Perspectives Anthology by Dana Soriano

Foreword By Steven R. Sabat, PhD

Among the many ways I have been blessed in this life are my professional and personal connections with Lisa Snyder. We ﬁrst met at a Gerontological Society of America conference in November of 1998 and recognized one another as kindred spirits especially in connection with helping people diagnosed with Alzheimer’s disease and their loved ones. In the ensuing years we collaborated professionally and became dear friends and, thanks to Lisa, I became a better person than I otherwise might have been.

A key focus of her work for twenty-seven years at the Shiley-Marcos Alzheimer’s Disease Research Center at the University of California at San Diego was creating and leading support groups for people diagnosed. Therein, she provided some of the most vulnerable among us with a place where they could feel safe, could feel listened to and heard, where they could show themselves and one another that they remained sensitive, thoughtful, insightful, caring, human beings even though they had been diagnosed and were experiencing the related daunting dysfunctions. As well, the

group members taught Lisa a great deal. Although the support groups were powerfully important ways of providing much needed direct help for people diagnosed and their loved ones, Lisa was not content with restricting her contribution to the well-being of others to those gatherings. Her gentle, respectful, yet irresistibly powerful determination to do as much good as possible for as many people as possible, led to her bringing a message of education, hope, and respect to a far wider audience than those who attended her support groups and their families. Thus did she create and work tirelessly to the last to write eighty-nine issues of the quarterly, electronically transmitted, Perspectives-A Newsletter for People with Alzheimer’s or a Related Disorder that enjoyed an international subscription. It is wonderfully noteworthy that the title of the newsletter reﬂects Lisa’s own perspective in that the newsletter was “for people with Alzheimer’s or related disorders”. She was writing directly to her audience rather than to their care partners, thereby underscoring brilliantly the fundamentally important idea that people diagnosed are people who deserve to be treated as such, to be educated, to be treated with the dignity, respect, and consideration they deserve as human beings, the same dignity and respect that they deserved and enjoyed for decades before being diagnosed. Indeed, to Lisa, they deserved nothing less than to be addressed directly and personally in what Martin Buber called an “I-Thou” relationship.

As a result of her death, far too soon, Perspectives is no longer being written, but herein you have an anthology of all eighty-nine issues containing a wealth of timeless information and insight that only someone as exceptionally sensitive and intelligent as Lisa could provide. It is most ﬁtting that her inspiring, humane voice continues to live on in these pages. May we all continue to learn and to grow in our own understanding and deepen our humanity as a result. Lisa would want nothing more.

Elisabeth ‘Lisa’ Snyder’s Legacy March 14, 1960 - February 11, 2018 By Christina Gigliotti, PhD

The Shiley-Marcos Alzheimer’s Disease Research Center (SMADRC) and world-wide Alzheimer’s community lost an innovative, creative, and deeply caring leader in the ﬁeld of dementia care on February 11, 2018, due to complications from her prolonged battle with breast cancer. While we continue to mourn her loss deeply, we will remain committed to honoring her incredible life and the numerous contributions she made locally and worldwide to individuals, families, the academic community, and the professionals providing care and services to persons with dementia and their family members.

Elisabeth ‘Lisa’ Snyder was born and raised in California and received her undergraduate degree in ﬁne art from Humboldt University in Northern California and a Master’s degree in social work, with an emphasis in medical social work, at San Diego State University. During her graduate work, she completed an internship at the University of California, San Diego’s Alzheimer’s Disease Research Center (UCSD ADRC) and immediately felt an aﬃnity for the work, partly due to her own personal

experiences living with her grandmother who was exhibiting undiagnosed Alzheimer’s symptoms. In 1987, after graduating with her Master’s degree in Social Work, she was hired at UCSD ADRC and remained at the center as the social worker and Director of Quality of Life (QOL) programs until she retired in 2014.

During her decades of tenure at the SMADRC, Lisa achieved an incredible balance in her roles as counselor of persons with Alzheimer’s and their families and conducting and disseminating meaningful research designed to gain insight into the often private world of persons with Alzheimer’s. Lisa developed a wide array of innovative QOL programs for persons with Alzheimer’s and related disorders, including one of the earliest support groups in the country for persons living with the disease. She was deeply committed to the individuals and families she worked with directly and also extensively engaged in providing training to professionals across the country and even abroad to provide more persons in the early stages of memory loss with groups of their own. She was actively engaged in collaborating with others to research the beneﬁts of group experiences for those diagnosed with Alzheimer’s. Her research and academic contributions focused on promoting greater empathy for the experiences of persons with Alzheimer’s to ultimately shape and advocate for more eﬀective care. Lisa worked extensively toward building national and international networks with colleagues interested in all aspects of early-stage dementia. Locally, she forged a relationship between SMADRC and four museums in Balboa Park to replicate the Museum of Modern Art program and create the Memories at the Museum Program. This program provides museum docents with specialized training on Alzheimer’s and related dementias and then provides them with the opportunity to utilize the training to give free monthly tours to this population with the purpose of supporting multidimensional aspects of quality of life.

Lisa did a great deal of writing, public speaking, and education about themes that arose in testimonies from persons with Alzheimer’s. Through those experiences, she found that there was great interest in hearing the ‘voice’ of diagnosed persons among families

and professionals. She authored the books "Speaking Our Minds - What It's Like to Have Alzheimer's" (revised edition, 2009) and "Living Your Best with Early-Stage Alzheimer's - An Essential Guide" (2010). These books highlighted the coping strategies used by persons with early stage memory loss to face the challenges in their lives; the changes they experienced as their symptoms advanced; their relationship changes with family and friends; and their hope, humor, and resiliency. Her books also highlighted the ways in which we can identify with and listen to persons with Alzheimer's to reduce the confusion and isolation that can accompany the disease. She wrote and edited 89 issues of the international quarterly "Perspectives - A Newsletter for Individuals with Alzheimer's or a Related Disorder." Perspectives Newsletter was widely disseminated and had an email distribution list of nearly 1500 subscribers (while new issues will not continue to be generated, back issues of the newsletter are on the SMADRC website). Lisa also authored numerous peer-reviewed journal articles to inform the professional community and booklets in collaboration with the National Institute on Aging Alzheimer’s Disease Education and Referral Center (ADEAR) to provide easy to understand information for persons with memory loss and their families.

Throughout her rich career at the SMADRC, Lisa remained inspired and enthusiastic about the possibilities for learning, rich engagement, and creativity inherent in working with and for persons with Alzheimer’s disease. She was a guiding force, thought leader, and innovative program developer in the greater dementia care community. She worked for decades supporting, giving voice to, and advocating for those with memory loss and their families. We will remember her as a deeply caring person who shared her many gifts generously in both her professional and personal lives. She was a committed professional whose career focused on promoting personhood for persons with dementia. As stated by Dr. David Salmon at the annual Open House Event, “The SMADRC has plenty of brains, but Lisa has always been the heart of the center.” In her personal life, she was a dedicated philanthropist, supporting a wide range of causes that she felt passionate about locally and abroad. She was a talented artist as well as a patron of the arts. She was an adventurer who traveled extensively over the course of

her lifetime, and an environmentalist who had a passion for hiking, gardening, and spending time in nature, especially in the Anza Borrego desert. Lisa lived her life with passion, empathy, and a deep concern for justice. Her legacy will live on and SMADRC is dedicated to ensuring her contributions to establishing the QOL programs will continue to be a high priority for the center. We will continue to oﬀer and expand these programs to support and give voice to persons with a wide array of diagnoses and their families. If you or someone you know is interested in participating in one of the SMADRC QOL programs, please contact Tracey Truscott, LCSW for more information. If you would like to make a donation to support these programs, please visit https://neurosciences.ucsd.edu/centers-programs/adrc/giving.html.

Origin: Robyn Yale and Lisa Snyder By Darby Morhardt, PhD, LCSW An anthology of Lisa Snyder’s Perspectives would not be complete without mention of the synchronistic connection with her long-time colleague, Robyn Yale. In 1995, Lisa and Robyn met after hearing about each other’s landmark work with early stage support groups. They even inaugurated parallel newsletters with Lisa’s Perspectives and Robyn’s International Forum for Early Dementia. Robyn Yale, in a recent interview, stated, “From the beginning, Lisa was intent on giving voice to the person with dementia.” While, they continued working together for many years, editing each other’s newsletters and providing ideas for articles, their interest began to diverge as Robyn placed more emphasis on education and training for professionals working with persons living with early stage dementia, particularly with her 1995 edition of – Developing Support Groups for Individuals with Early-Stage Alzheimer’s Disease. True to Lisa’s intentional focus on the person, in 1999 she subsequently published, Speaking Our Minds: What It’s Like to Have Alzheimer’s, one of the ﬁrst books to document the subjective experience of the person living with dementia interwoven with her insightful reﬂections. In spite of divergent paths, these two contemporaries established themselves as leaders who recognized that people with changing cognition and abilities continue to have much to say and contribute and teach all of us.

Historical Analysis By Lisa Snyder, LCSW for Innovative Practice August 1, 2007 Perspectives: A newsletter for individuals with Alzheimer’s or a related disorder

Abstract

This article describes the development of a newsletter written for people

living with Alzheimer’s disease or a related disorder and outlines some of its beneﬁts for people living with dementia, family carers and professionals. The publication is one of a growing number of resources that attempts to address the direct needs and experiences of persons living with dementia. Keywords

communications media; dementia; empowerment; self-help techniques

Background In the early 1990s, scientiﬁc research and improvements in comprehensive clinical assessments resulted in greater numbers of persons with only mild symptoms of memory loss being diagnosed with Alzheimer’s or a related disorder. Simultaneously, the advent of early-stage support groups began to bring persons with dementia together for their own education and support (David, 1991; Davies, Robinson, & Bevill, 1995; McAfee, Ruh, Bell, & Martichuski, 1989; Snyder, Quayhagen, Shepherd, & Bower, 1995; Yale, 1989). At that time, the availability of educational and support materials

written for caregivers of persons with dementia dramatically outweighed any materials written for persons with the disease, resulting in newly diagnosed individuals having no literature that addressed their own educational or support needs. Persons experiencing symptoms risked becoming passive recipients of a frightening illness while their caregivers had opportunities to become informed and proactive.

Perspectives: A Newsletter for Individuals with Alzheimer’s or a Related Disorder was initiated in August 1995, to address this void in the literature and to help foster a feeling of international community for persons with dementia. Now into its 13th volume, the eight-page quarterly international newsletter continues to address the interests, concerns, and reflections of people living with early-stage dementia. It provides up-to-date research and resource information, explores relevant topics, and provides a forum for discussion. Readers with dementia contribute their own narratives to the newsletter in the form of articles, poetry, letters, or group endeavours. By serving as a forum for personal expression and networking, the newsletter aims to stimulate dialogue between persons with dementia who may not otherwise find peer support. The newsletter format provides brief articles or columns that are easy to read and can be reread or referred to multiple times as needed. It is now available as a free-of-charge electronic subscription through the generosity of the Shiley-Marcos Alzheimer’s Disease Research Center at the University of California, San Diego. Staff of the Shiley-Marcos Alzheimer’s Disease Research Center and Robyn Yale, LCSW, an independent consultant in Alzheimer’s disease, serve as editorial advisors. Through the electronic subscription, Perspectives addresses a wide audience culturally, ethnically, and geographically and has surface mail and email subscribers from every continent. This testifies to the manner in which electronic information can be disseminated and replicated with ease around the world. Correspondence received from subscribers in rural communities and under-developed countries is evidence that Perspectives also serves those living in areas with limited access to early-stage programs or information available in developed urban areas.

Newsletter evaluation There have been no formal attempts to evaluate the satisfaction with or efficacy of Perspectives. Since its inception, however, correspondence from readers has provided illuminating feedback. The overall content of the feedback may well reflect a bias towards those who are more comfortable disclosing positive impressions versus those who may keep negative ones private. The prevailing reason subscribers have noted for discontinuing a subscription has been the progression of the person with dementia and his or her decreased ability to read or benefit from the newsletter contents.

Feedback attests to the newsletter’s broad impact on persons with early- stage dementia, as well as those providing care and services. Readers with dementia report feeling empowered and relieved to hear from their peers and to learn ways to cope with symptoms of the disease. Family members and professionals gain insight into the direct experiences and needs of persons with early-stage dementia and are able to network with each other through the resources and programs that are reviewed each issue. Feedback generally falls into the following categories.

Fosters acceptance and hope These comments speak to the way Perspec- tives has facilitated greater awareness of Alzheimer’s and related dementias as well as aﬀording readers feelings of validation and encouragement. One woman states:

Thank you for your attention to early Alzheimer’s. Like the ﬁrst trimester of pregnancy, people can look skeptical and say, ‘You sure don’t look pregnant’. We who live with it are only too aware it’s there. Early-stage support groups and Perspectives allow us to accept it with much more grace than might otherwise be possible.

Another reader with dementia speaks of the newsletter as a kind of lifeline. She writes: This magazine has saved me – when I get down, I get old copies out and reread them

Provides practical information for persons with early-stage dementia and care partners Readers comment on speciﬁc articles that pertain to management of daily life and coping strategies. These articles are helpful to both persons with dementia and care partners. One man with Alzheimer’s describes the impact of an article on his care partner: I appreciated the depth of the article about preventing falls and so did my wife. She thought so highly of the piece that she went out and bought a cane for me to use. Since I started using it, I am not falling as much as earlier on.

Fills a gap Many messages over the years have attested to the value of having an ongoing resource written specifically for and by persons with dementia. Although there have been a growing number of contributions to the literature for people with dementia, most educational and support materials are still written primarily with care partners in mind. Professionals have noted the importance of the newsletter in enhancing their own awareness and helping them to further their work. One of these writes: I find your newsletter very interesting. Working with people with dementia, I come across very little which is actually written by people with dementia for people with dementia. I look forward to every issue and find every one enlightening and thought provoking.

Facilitates communication between persons with early-stage dementia and their care partners Perspectives provides a catalyst for dialogue. Sometimes this occurs when other avenues may be shut oﬀ by symptoms of dementia. A woman writes: My husband can no longer read with ease, but I can read Perspectives to him. I enjoy it too! The newsletter has also served as a way for families to derive direct advice from persons with dementia about how to assist their loved ones. In one example, a daughter writes:

I enjoyed your newsletter, but my mother is not willing to read it. Do you have any others with experiences like this or ideas for me?

These responses were published in the next issue of the newsletter. This daughter was moved by the feedback and found it very constructive in her relationship with her mother.

Provides mental stimulation and fosters empowerment A ﬁnal category of comments speaks to the meaningfulness of the coping tips that are often published in the newsletter. One man writes: I liked your brainstorming column. I’m coping by keeping my mind occupied, reading books, exercising regularly and using food supplements. I love Perspec- tives and am anxious to get the second issue!

Perspectives also reports on international innovative early-stage programs. This enables readers with dementia to advocate for these programs in their communities and aﬀords professional readers the opportunity to network with persons with dementia and other professionals to replicate these programs. For example, a recent issue of Perspectives featured the New York City Chapter of the Alzheimer’s Association’s annual early-stage conference that is organized by and for people with dementia and provided information on their training materials. As a result of the article, a reader with Alzheimer’s in Los Angeles obtained the materials from the New York City chapter and is now organizing a similar conference with his local Los Angeles Chapter. Perspectives served to empower this reader to eﬀect change and foster an educational experience in his own community.

In another example, a professional from Toronto, Ontario writes:

I co-facilitate an Early-Stage Support Group in Canada. The group members have been avid readers of your newsletter for several years. In the May–July 1996 issue our group members’ Words of Advice was published. The group was ecstatic about this and went on to publish their list of advice in the form of a bookmark we provided to local bookstores for public distribution during Alzheimer’s Awareness Month. Recently our current group wrote a letter to our local physicians regarding their experiences when undergoing assessment. The group wants to share this letter with Perspectives readers as it may inspire others to speak up about their experiences and raise awareness in the medical community.

Conclusion Throughout the years, numerous organizations around the world have been given permission to reprint articles from the Perspectives in their own agency newsletters or training materials and as handouts for persons with dementia. Online accessibility at the Shiley-Marcos Alzheimer’s Disease Research Center (2000) website also aﬀords individuals and agencies the opportunity to download the newsletter and distribute it as needed.

More recently, two other electronic and hard copy newsletters have been initiated for people with dementia. Insight – For and By People With Dementia is a newsletter of the Alzheimer Society, British Columbia (2007) and Living with Dementia (Alzheimer’s Society, undated) is published by the Alzheimer’s Society in the United Kingdom. These newsletters are welcome additions to the slowly growing body of literature that is attempting to address the direct needs and experiences of persons living with dementia. Through increased opportunities for sharing, networking, and receiving information, persons with Alzheimer’s and related disorders can experience empowerment and support and ﬁnd an international community in the face of challenging circumstances.

Acknowledgement Perspectives: A Newsletter for Individuals with Alzheimer’s or a Related Disorder is supported through a grant from the National Institute on Aging AGO5131.

References Alzheimer’s Society (undated). Living with Dementia. Retrieved 23 May 2007 from http://www.alzheimers.org.uk/i_have_dementia/newsletter/index.htm Alzheimer Society British Columbia. (2007). Insight – For and By People With Dementia. Retrieved 24 May 2007 from http://www.alzheimerbc.org/insight.php David, P. (1991). Eﬀectiveness of group work with the cognitively impaired older adult. American Journal of Alzheimer’s Care and Related Disorders and Research, 6(4), 10–16. Davies, H.D., Robinson, D., & Bevill, L. (1995). Supportive group experience in early Alzheimer’s Journal of the American Geriatrics Society, 43(9), 1068–1069. McAfee, M.E., Ruh, P.A., Bell, P., & Martichuski, D. (1989). Including persons with early stage Alzheimer’s disease in support groups and strategy planning. American Journal of Alzheimer’s Care and Related Disorders and Research, 4(6), 18–22. Shiley-Marcos Alzheimer’s Disease Research Center (2000). Newsletters. Retrieved 23 May 2007 from http://adrc.ucsd.edu/newsletter/newsl.htm Snyder, L., Quayhagen, M. P., Shepherd, S., & Bower, D. (1995). Supportive seminar groups: an intervention for early stage dementia patients. Gerontologist, 35(5),691–695. Yale, R. (1989). Support groups for newly-diagnosed Alzheimer’s clients. Clinical Gerontologist, 8(3), 86–89.

Reﬂection by Lisa’s husband By Jeﬀery Irwin, MFA

I remember when Lisa ﬁrst started developing her idea for Perspectives. She was so excited and felt it could be helpful to those individuals with Alzheimer’s. She recognized that there was already a lot of the information for professionals, families and caregivers, but very little for the actual people with Alzheimer’s. Lisa had tremendous empathy for those with the disease and wanted them to know that they were not alone in their concerns, fears and experiences.

Lisa spent a year before graduate school living with and caring for her own grandmother (DeeDee) who had a mid to advanced form of Alzheimer’s. This experience solidified her direction in life for helping people with the disease. The first line to her first newsletter stated. “Welcome to the first issue of Perspectives. The purpose of this newsletter is to speak directly to the unique concerns, experiences and reflections of individuals diagnosed with Alzheimer’s disease.” She wanted to be practical and personal, a characteristic that spoke to Lisa’s own character. In a practical

manner, Lisa included articles on the latest research, links to resources and tips on coping with Alzheimer’s. On the personal side she often included thoughtful stories from individuals with the disease or bits of poetry and contemplative writings. In so many ways Perspectives spoke of Lisa’s own rich character, a love for others and a hope to help them, with knowledge and empathy. She wanted to keep the articles short and concise to hold the attention of the reader, but long enough to reinforce an idea or point.

In preparation for upcoming newsletters Lisa was always compiling new information, stories from individuals and introspective writings from poets and inspiring individuals. She was working on another newsletter shortly before her passing. As usual, trying to complete as much as she could for the people she loved.

Lisa was dedicated to each and every issue, fine tuning and editing were her specialty and joy. She said writing did not come easily to her, but was willing to work at it because she so enjoyed the outcome and knew how many people appreciated her efforts. Lisa felt she received much more back than she gave. Often receiving letters from people noting how much they appreciated a certain article or personal reflection. These letters touched her deeply and surely urged her on for those twenty-one years. I was lucky enough to have read a few of them and saw the reasons they touched her so. They were quite moving and always sincere.

If she were here today, I am sure she would say thank you to all the people who helped her in this quarterly endeavor, the individuals who subscribed to Perspectives and the ADRC who supported it. She felt it was an honor and a privilege to speak and share with so many.

She sends her love.

Acknowledgements All of the paintings and photography displayed as volume cover art in this publication were created by Lisa Snyder, LCSW. They were generously shared for distribution in this publication by her husband, Jeﬀery Irwin. Photographs of Lisa Snyder were taken and shared by Jeﬀery Irwin. The cultivation, editing, and compilation of this Anthology was a collaboration between the following individuals in alphabetical order of last name: Christina Gigliotti, PhD; Lisa Gwyther, MSW, LCSW; Darby Morhardt, PhD, LCSW; Jennifer Watson, MA The graphics, layout, and formatting of this Anthology was completed by Dana Soriano, BS Valued contributions to the cultivation of content and images by Rebekah Barakos-Cartwright, PhD and Isabella Hoang, BA Any information that is reproduced from this site should contain proper acknowledgement of the Shiley-Marcos Alzheimer’s Disease Research Center as the originator. The advice and strategies found within may not be suitable for every situation. This work is shared with the understanding that neither the author nor the publisher are held responsible for the results accrued from the advice in this anthology.

Volume 1

Volume 8

Volume 16

August 1995 - July 1996

August 2002 - July 2003

Fall 2010 - Summer 2011

Volume 2

Volume 9

Volume 17

August 1996 - July 1997

August 2003 - July 2004

Fall 2011 - Summer 2012

Volume 3

Volume 10

Volume 18

August 1997 - July 1998

August 2004 - July 2005

Fall 2012 - Summer 2013

Volume 4

Volume 11

Volume 19

August 1998 - July 1999

August 2005 - July 2006

Fall 2013 - Summer 2014

Volume 5

Volume 12

Volume 20

August 1999 - August 2000

August 2006 - July 2007

Fall 2014 - Winter 2016

Volume 6

Volume 13

Volume 21

August 2000 - July 2001

August 2007 - July 2008

Spring 2016 - Winter 2017

Volume 7

Volume 14

Volume 22

August 2001 - July 2002

August 2008 - July 2009

Spring 2017 - Fall 2017

Volume 15 August 2009 - July 2010

VOLUME 1

Volume 1, Number 1: August - October, 1995 Making Your Voice Heard: Support Group Members Write to Legislators Alzheimer's Association's "Safe Return" Program Volume 1, Number 2: November - January, 1996 Support Groups: Opening New Doors for Diagnosed Individuals Some Thoughts by Bill McCurdy Overview of Drug Studies by Robin Katelle, R.N., M.S. The Driving Controversy: Alzheimer's and the Automobile Volume 1, Number 3: February - April, 1996 Simple Pleasures are Best by Tim Brennan Newsletter for Professionals Trouble With Reading? Two Resources Can Help! Reading’s A Struggle Volume 1, Number 4: May - July, 1996 The Gift of Humor Advice From Those Who Know

Volume 1, Number 1: August - October, 1995

In the recent years, medical progress has advanced to the point where a diagnosis of Alzheimer's can be made at a relatively early stage in the disease. Consequently, there are growing numbers of diagnosed individuals across the country and indeed, around the world, who are seeking forums for sharing experiences and acquiring information about living with Alzheimer's. We hope that this newsletter will be the beginning of one such forum.

Welcome to the ﬁrst issue of Perspectives. The purpose of this newsletter is to speak directly to the unique concerns, experiences, and reﬂections of individuals diagnosed with Alzheimer's disease. While there is a great deal of literature on Alzheimer's disease written for professionals and families, there is an enormous gap in resources for you, the diagnosed individual. Thus while the subject of Alzheimer's disease is increasingly in the limelight, people diagnosed with the disease sometimes feel as if they live in the shadows.

is an independent project between myself, a clinical social worker at the University of California, San Diego's Alzheimer's Disease Research Center and Robyn Yale, LCSW, a clinical social worker based in San Francisco. Our communication and collaboration over the past few years has been a source of encouragement and support to us. We oﬀer this newsletter to you in this same spirit, and look forward to future communication. -----Lisa Snyder, LCSW

The newsletter title "Perspectives" invites us as editors and you as readers and/or contributors, to shed light on the many dimensions and viewpoints of living with Alzheimer's disease. Our aim is to be both practical and personal in our newsletter content. As such, each issue will provide a combination of articles on research updates, useful resources, tips on coping with Alzheimer's disease and personal reﬂections.

Lisa Snyder and I have been on "parallel paths" in our work for a number of years, both specializing in the early - or beginning - stages of Alzheimer's

disease. We have been involved in clinical practice and research to study the reactions, feelings and needs of people who are only mildly impaired by the illness. We have developed support groups for people with Alzheimer's disease, written about our experiences, and conducted education and training events to share what we have learned with other professionals.

hope that you will use this newsletter not only to communicate with us, the editors, but to also share your comments and perspectives about living with Alzheimer's disease with one another. The articles in this newsletter may spark your thoughts, ideas or opinions. We welcome any feedback about the newsletter contents and would also enjoy hearing requests for future newsletter topics.

This newsletter is another step in our collaborative evolution. Our message is one of hope and optimism. People with Alzheimer's disease face challenges, but have many capabilities as well. They ﬁnd ways to cope and go on with life. They may not identify with the stigma and stereotypes commonly held about the illness but are often needlessly isolated by them.

BRAINSTORMING

One of the things everyone diagnosed with Alzheimer's disease has in common is the experience of memory loss. We frequently hear creative and useful strategies and want to share some of those that are most frequently mentioned: I keep a special place for easily lost objects (keys, glasses, date books etc.). That way I'm less apt to forget where I put them. I keep a photo album with pictures and names of signiﬁcant friends, family, and places. Keep a date book with you that logs all appointments, special dates, or events. Cross oﬀ the days as they pass. I exercise regularly. It reduces stress and soothes my mind. I try to maintain a sense of humor. Laughter helps me be more forgiving of myself.

We invite you to join us in educating the public about the human beings behind the diagnosis "Alzheimer's disease" and in oﬀering support to one another. We also encourage the involvement of family and friends in making this newsletter available to you. We look forward to learning from you and with you. -----Robyn Yale, LCSW

MAILBOX One of the functions of this newsletter is to provide a forum for diagnosed individuals around the country, to communicate with one another. We

cure will come. The bad news is that federal funding for Alzheimer's disease research has already been cut and is further threatened by upcoming Congressional budget decisions. Upon hearing this news, members of the support group were outraged and took action. They dictated a letter (see page 5) that was sent to their Senators and Congressional Representatives and to the Director of the White House Conference on Aging. The White House Conference on Aging was held May 2-5, 1995. During this conference, delegates appointed by Members of Congress and Governors gathered in Washington to chart aging policy into the next century. By writing their letter, support group members made their voices heard. The Alzheimer's Association had 18 delegates at the conference to also advocate for the needs of this ever growing group of citizens.

What strategies do you use for coping with memory loss? Maybe you'd like to share them so that we can pass them on to others. See our MAILBOX column.

Making Your Voice Heard: Support Group Members Write to Legislators

Now, back to the good news! The conference delegates considered over 100 separate resolutions on a wide range of aging policy issues. When the voting was over, the resolution to expand funding for Alzheimer's research had received the 5th highest number of votes! It was the only signiﬁcant new funding supported by the delegates. The results of this White House Conference on Aging have found their way into Congressional debate. Now is the time to let your Senators and Representatives know who you are and

The Alzheimer's Disease Research Center in San Diego runs a weekly support group for individuals diagnosed with Alzheimer's disease. Participants frequently inquire about research updates towards the treatment or cure of their illness. The good news is that research has never been more promising. Important advances are being made on a regular basis and it is through these continual eﬀorts that the ultimate prevention or

what you want. Your letters and voices do count and will be heard! Send a letter of your own or encourage your friends or family members to help you in the process (and to send one of their own too!) All of us can make a diﬀerence and with a collective eﬀort, we will ensure the ultimate treatment, cure or prevention of Alzheimer's disease.

circumstances, it is not uncommon even to forget one's own address or phone number. In response to these concerns, the Alzheimer's Association has developed a program called "Safe Return." This nationwide program enables police, community agencies and private citizens to identify someone with memory loss and help them return to home. The program provides individuals with:

Alzheimer's Association's "Safe Return" Program "Recently I was driving in a familiar area but I had gone farther than I usually go. There were buildings on either side but nothing seemed to be open. So I went back and forth and back and forth and I was afraid to move more because then I really wouldn't know where I was. It was like a nightmare. I ﬁnally saw a door on somebody's building that was half way open so I asked for directions. Then I was OK when I knew what to do next. But the fear is that I'm lost forever. I think it's a fear of being stranded. -----Jean

An identification bracelet or necklace with the name of the program, the person's name, ID number, the words "memory loss" and an emergency 800 number Wallet identification cards A 24 hour toll-free number to contact when an individual is lost or found Access to the national information computer of 17,000 local law enforcement agencies to help find a missing individual Some individuals with Alzheimer's disease are reluctant to wear the Safe Return bracelet for fear of being somehow "labeled." Because it is only recently that Alzheimer's disease has received such world wide recognition as a common and significant medical disorder, many diagnosed individuals still feel a sense of stigma about their condition and struggle with trying to hide it. However, many others have reported feeling that it is advantageous

Many individuals with memory loss have a frightening story to tell about a time when they were lost and thought that they would be unable to ﬁnd their way home. This may happen while driving busy streets, walking in new neighborhoods, or simply going out to do an errand. The fear and stress of these moments compound the memory loss and make it that much more diﬃcult to concentrate. Under these

for others to know of their memory impairment or diagnosis especially in an emergency. This can remove some of the pressure in a crisis and enable an individual to better receive assistance. The Safe Return bracelet is discreet while also providing access to important information if necessary. Ultimately this can serve to give one a greater sense of independence and security. Recently a woman, newly diagnosed with Alzheimer's disease, gave her own plug for the Safe Return program: Since I got my Alzheimer's bracelet I feel so secure. I can tackle anything! -----Liz

this newsletter, we are fortunate to have access to experts in the field of Alzheimer's disease and related disorders. We offer this column to you, the subscriber, as a place to address your questions so that we might find answers for you.

Volume 1, Number 2: November - January, 1996 Support Groups: Opening New Doors for Diagnosed Individuals "I'm all for support groups for people with Alzheimer's disease. We can talk about what we experience and then express what we feel about what we anticipate. The main thing is to share experiences about a similar thing without having to put up the wall of how people are going to respond." -----Betty Across the world, in a movement long overdue, individuals diagnosed with Alzheimer's disease (AD) and related disorders, are seeking out, initiating and participating in support groups. The idea of support groups is not new. However, it is only more recently that this concept has been applied to people diagnosed with Alzheimer's disease. It has long been understood that people with a common concern can unite, in a group setting, and ﬁnd comfort, companionship and inspiration in the sharing of their lives. As Alzheimer's disease is now often diagnosed in the early stages, and sometimes at a relatively young age, more and more

To enroll in or to receive more information about the Safe Return program, contact your local chapter of the Alzheimer's Association.

Questions and Answers Living with Alzheimer's disease can raise numerous questions. Individuals and their families may have concerns about medical, social, or emotional aspects of the disease. Sometimes diagnosed individuals have access to resources or individuals to whom they can address these questions. Others may live in smaller communities or be unable to ﬁnd a network of support and information. One purpose of this newsletter is to serve as an information resource to diagnosed individuals, their families and their communities. As editors of

people are ﬁnding it valuable to seek out others with like experiences, feelings, and ideas. As one group member stated,

later years. As such, some ﬁnd that a group of one's age related peers is important. Other group members feel that regardless of age, they all ﬁnd shared issues in the experience of living with AD.

"Now I realize I do have a problem, but I'm not alone.. It's not the end of the world you've found a way to go on with your lives." -----(Yale, 1994) While there is no one profile of a support group participant, most will find a common bond in their willingness to acknowledge that they have a memory problem which, in many different ways, affects their lives. Common themes of discussion include: coping with memory loss, physical and emotional health, the benefits of humor, research and drug studies, driving and safety, social or family relationships, and daily living. Meetings can incorporate guest speakers or participants may bring in articles or other resources to share.

The format and structure of support groups varies. Many groups are oﬀered on a time limited basis - that is, the group may run for eight to twelve weeks and then come to a close. Participants may then choose to continue to meet informally or in some cases, follow up groups are oﬀered on a monthly basis. In other instances, groups are designed to be ongoing. Participants join the group and attend the meetings for as long as they chose and are able to continue. Some group formats also include family members. The diagnosis of AD or a related disorder can often leave an individual feeling alone and discouraged. Upon coming to a support group, new members often comment that they never knew there were others out there facing

In her pioneering efforts to establish support groups for diagnosed persons, Diana Friel McGowen, diagnosed with AD and author of Living in the Labyrinth, advocates for specific "early onset" support groups. Early onset refers to those persons diagnosed prior to the age of 65. Individuals in this age bracket may find that their concerns regarding career, social and family relationships and coping with AD are quite different from those who are diagnosed in their

the same condition. Frequently, a feeling of safety and belonging develops when participants discover they can share, be who they are, and be understood. However, a support group is not for everyone. Some people do not feel a positive beneﬁt in a group exchange or have never felt comfortable in group settings. Others may feel that it is more beneﬁcial not to acknowledge their disease. What is important is that a group be made available to those who seek it and can participate.

I may not be able to read much more than headlines but, I can read those! I can see and hear CNN and PBS and understand all the news, sports and other good programs. I can go to movies and can listen to books on tape. I understand just about all I hear and see. I can go for walks alone in the neighborhood and enjoy looking at the changing face of nature in the canyons.

If you are a member of a support group, write and tell us about it! If you are looking for a group, contact the Alzheimer's Association to see if there is one near you. If there isn't, request that one be started! Feel free to suggest they contact us for more information. Reference: Yale, Robyn (1994). Early Stage Alzheimer's Patient Support Groups: Research, Practice and Training Materials. Special Projects Press: San Francisco, CA

I can enjoy the antics of my cat, listen to his purr, and feel his response when I stroke him. I enjoy hearing about my two sons' activities and being with my friends at Morning Out Club and the Support Group. I can still play a game of tennis, and do, and even keep score with the help of some beads on my wrist. I can help Kathleen in the house and garden, such as, vacuum, wash dishes, put out the trash and take care of the cat litter box, sweep outside and tend my ﬁg tree, change light bulbs and many other tasks.

Some Thoughts By Bill McCurdy With inspiration from my wife, Kathleen I may have memory loss or even Alzheimer's

With a lot of patience, I can slowly write a letter on the computer and print it out.

BUT

Albeit slowly, I can play a game of Othello and cards.

I still can see, hear and understand, feel, smell and even speak, when I'm not nervous!

I enjoy a walk along the beach in La Jolla and picnics on the cliﬀs - watching the seals and birds and listening to the ocean.

Overview of Drug Studies By Robin Katelle, R.N., M.S. University of California, Davis Alzheimer's Disease Center Individuals with Alzheimer's disease (AD) frequently inquire about the availability of medicine to treat or cure their illness. Currently, most drugs for AD are experimental and are not expected to be a cure. However a promising hope is for them to halt or slow down the disease process.

And listening to classical music. And of course I look forward to those great vegetarian meals!

To understand how drugs may work, it is important to understand some underlying mechanisms of AD. Normally, billions of nerve cells communicate in the brain through various pathways. Eﬀective communication of these cells is necessary for cognition. Cognition is a set of abilities, including learning, memory, language, reasoning and perception. Alzheimer's disease disrupts these pathways of communication and leads to the symptoms of memory loss, confusion and diﬃculty in performing tasks of daily living.

And remember Stephen Hawking!!! Editor's note: The Morning Out Club, run by the San Diego Chapter of the Alzheimer's Association, is a social club for individuals with early stage Alzheimer's disease. The Support Group is at the University of California, San Diego's Alzheimer's Disease Research Center. Bill also refers to Steven Hawkings, a renowned physicist who is physically debilitated by Lou Gherig's disease. Unable to move his body, he continues to dictate his theories and write groundbreaking publications. He was recently married and serves as a reminder that in the face of severe hardship, life can go on!

Nerve cells need a carrier to communicate with each other. These carriers are known as neurotransmitters. There are numerous neurotransmitters in the brain and many of these do not work properly in individuals who have AD. Many of the drugs for treating AD are aimed at increasing the amounts of neurotransmitters available to carry

important messages between brain cells. This in turn may lead to improvement in the symptoms of the illness and retention of abilities which might otherwise be lost. One example of a drug that works on neurotransmitter systems is Cognex (a.k.a. Tacrine). Cognex is the only drug now available by prescription to treat AD. The only way to obtain other medications is to participate in a drug study or "clinical trial". One hopeful area of drug research is in the development of drugs that may be more eﬀective than Cognex and/or have fewer side eﬀects. Examples of these drugs under study are Alcar and ENA-713.

2) How is it expected to work? 3) Are there possible side eﬀects? 4) What are the eligibility criteria? 5) How long will the study last? 6) How often will I visit the clinic? 7) Will I receive a placebo (a sugar pill) or the actual medication? 8) Is there any cost to participate?

Another theory is that inflammation in the brain can contribute to the development of AD. Studies are now underway to look at the effectiveness of Prednisone, an anti-inflammatory drug, in slowing AD progression.

Your participation must always be voluntary with the understanding that you can withdraw from the study if necessary.

Ultimately, researchers hope to learn the fundamental mechanisms which cause brain cells to die. Drugs could then be developed to deliver the chemicals to prevent brain cell death. To learn about drug studies in your area, talk with your primary doctor/nurse or your local chapter of the Alzheimer's Association.

Since most studies only allow people in the early to middle stages to participate, it is important to have a thorough diagnostic evaluation as early in the disease as possible. There is a great value to participating in drug trials not only for individuals who may beneﬁt from a certain drug, but for society as a whole. Research into treatments for AD contributes to future knowledge and an ultimate cure.

There are several important questions to ask when looking into a drug study: 1) What is the drug being studied?

MAILBOX

Symptoms of memory loss, disorientation, and changes in vision and perception may result in drivers getting lost, misjudging distances, forgetting the "rules of the road", or having slowed reaction times when making the multiple quick decisions needed to drive safely on freeways or around town. Concentration may be affected as well as coordination. Some memory impaired people find they are more easily frustrated in stressful situations. This can affect driving performance and safety.

I liked your Brainstorming column. I'm coping by keeping my mind occupied, reading books, exercising regularly and using food supplements. I love and am anxious to get issue #2! John Sonneborn Helendale, California I just received my first issue of and it's terrific! I'm so glad to see information coming out for the person with Alzheimer's disease because there has been so much available to those like myself who work in the field. People in our early stage support group will be happy to have this on an ongoing basis.

Research ﬁndings in this area are not consistent. While some studies indicate that drivers with AD are 4-8 times more likely to experience motor vehicle accidents, others conclude that drivers in the early stages of AD have a slightly greater risk than most drivers but, have a lower risk of accidents compared with young male drivers. Some ﬁndings suggest that the AD diagnosed driver tends to get in more "fender bender" types of accidents rather than major collisions. Driving too slowly is also a frequently reported safety hazard.

Carlene Peregrine, Program Director Alzheimer's Association of Northwest Michigan

The Driving Controversy: Alzheimer's and the Automobile To drive or not to drive - That is a big question and one that will face every individual diagnosed with Alzheimer's disease (AD) or a related memory disorder. While we can't make that decision for you, we can attempt to answer some of the most frequently asked questions:

It is unlikely that you will have your license automatically revoked due to a diagnosis of AD or a related disorder. In

some states, physicians are mandated by law to report a diagnosis of AD to the Health Department who then reports to the Department of Motor Vehicles (DMV). In other circumstances, concerned family or friends may make a report. The DMV may then review your driving and/or medical records. You are then asked to come in for testing to conﬁrm your ability to drive safely. A word of caution: These procedures vary considerably from state to state and seemingly from person to person. You will have to check with your local DMV for regional speciﬁcs.

• Driving too slowly or too quickly. • Losing one's temper or becoming easily frustrated can signal that we are getting overwhelmed by the multiple demands and stressors of driving. For some, a "limited license" may be an option to enable continued driving close to home while avoiding the more hazardous freeways or unfamiliar zones.

If you have a driver's license, you have the legal right to drive. However, should your disease progress in such a way as to obviously aﬀect your driving (i.e. the signs referred to above) and you do not voluntarily seek to be retested for driving safety, this poses complications. Should you get in an accident, one could then charge that you knowingly drove (or your family let you drive) in a disabled condition that put you and others at risk for injury. As such, even though you have a license, you and your family need to show good faith in keeping up to date on the eﬀects of AD on your driving performance. It is strongly recommended, for legal and ethical purposes, to be voluntarily retested on a yearly basis for safe driving.

We are not always the best judge of our own driving. Sometimes a friend or family member notices problems before we do. Look for the following red flags or try to listen if someone points them out to you. While we all make mistakes sometimes, repeated errors are cause for concern: • Forgetting how to get to familiar places can indicate changes in memory or concentration. • Misjudging distances can be due to vision and perception changes. • Not following traffic include running stop signs or red lights, or stopping at a green. • Poor decisions in traffic include not using turn signals, weaving across lanes, becoming confused in four way intersections, or not yielding to traffic when needed.

For many, driving is a symbol of independence and freedom. Some people express feeling like a "second

class citizen" or a "nobody" without their driver's license. Others voluntarily give up driving and feel relieved to let someone else take over this responsibility. Sometimes it is diﬃcult not to take the whole issue of driving personally. However try to keep in mind that AD is only one of a number of medical conditions that place a person at risk for driving. You are not being singled out and you are not alone. If you feel conﬂicted about the issue of driving, it is important to have a few trusted friends, family members or professionals with whom you can talk. Whether you drive or not, consider researching other means of transportation. Walking or riding a bicycle can be pleasurable or friends and family are often willing to provide transportation. Consider that even if you are not doing the driving, this does not mean that you can't have some say in the destination! While it is important to acknowledge a loss, it is also essential to focus on our remaining choices and abilities. Whether you have the keys or not, you can still, in some ways, be in the driver's seat.

Our thanks to Luann Beberman JD for consult regarding legal issues and driving

Volume 1, Number 3: February - April, 1996 Simple Pleasures are Best By Tim Brennan My life and that of my wife Peggy, has changed significantly since I was first told I had Alzheimer's disease. It is as if we were in a sailboat and have gradually given up on using a map, the stars and a rudder to steer by. The sails are rigged, and we think silent prayers or thoughts for the wind to blow us wherever God wants us to go. I continue to lose a little capability here and there. The losses are accepted. What is left is enough. I do battle every inch of the way. The eventual, probable outcome of having Alzheimer's is not important. One must fight the good fight. "Life does not end when a doctor says you have Alzheimer's - it goes on" I do household chores, and I am happy. Then I look at a dripping faucet and feel ashamed. I no longer know how to fix the problem. We must call a plumber now. Peggy and I try to help others, where and when we can. Our help wants to be a quiet thing, like leaving a food basket on a needy person's front porch, ringing the doorbell and then

departing before the door is opened. Life is not all doom and gloom with Alzheimer's disease. There are many happy and/or humorous moments occurring just about every day. Peggy and I play girlfriend-boyfriend once in a while. One night she took our car to the show and I met her there driving our van. As we came out of the show afterward, I couldn't remember where we were, where the van was parked or how to get home. Peg gave me the proper directions and, after looking around a little, I located the van. As I started to drive, the scenery and buildings passed were not recognized. I felt lost. The lost feeling continued until I drove within 2 miles of our home. Later, as I tried to analyze what had happened, I realized all the driving was done on a road I traveled almost every day. But the section of the road that was unfamiliar had recently been rebuilt extensively, changing it from a four-lane divided highway. The lost feeling occurred the ﬁrst time I drove it at night, after the major work was completed.

like making up a little sign to post saying: I'm lost and I went to look for myself. If I get back before I return, please ask me to wait for myself. Life does not end when a doctor says you have Alzheimer's - it goes on. You enjoy what you can when you can - like my wonderful walks in the park to take slide rides with my three year-old granddaughter. The playground is six houses away, and so far I haven't gotten lost going there or returning from it. Sometimes we ride the slide together. At other times we go down separately. Slides are fun. The spiral slide puts a smile on your face, but the ride is too short. The covered, through the tunnel slide is also too short and is only good for belly rides. My grand-daughter and I ride the big slide. It gives you a long enough scream out, at least once, or in my case, do a "Yee, Doggies" yell along with a laugh. Life with Alzheimer's can still be good. It must be diﬀerent. We must make it simpler and continue to make it more simplistic as we lose capability. Once we recognize the disease's progression, we can accept the fact and work toward making the most of what we have today. Life sometimes can be like a slide ride. We can take the short, safe one. Or we can take the long one, which is a little scarier, has a few more chances for possible hurts, but is guaranteed to give you a "Yee Doggies" ride Carpe Diem (Seize the Day).

Shortly after this incident, I got a handicapped sticker for our van. Use of handicapped spaces makes it easier for me to ﬁnd the van. Before the sticker, locating the van in a large parking lot must have been similar to Columbus spotting land after aimlessly wandering. Despite the sticker's real usefulness to me, I am sure Peggy, at times, would like for me to Krazy Glue it to my forehead. There are times when I feel

Editor's note: Tim Brennan, 52, is keeping a diary of his thoughts and experiences on living with Alzheimer's disease. His articles have been featured in the St. Petersburg Times. He has graciously agreed to share more of his writing in upcoming issues of .

My name is Andrea Lynd Nold. I live in Denver Colorado. I have Alzheimer's disease. Very recently, I took a trip with my daughter to Switzerland. We made little use of travel agencies but enough to get us some wonderful help from the local folk. They took us into their homes - very simple farm houses. We made due with our tentative German and they helped us, laughing at our mistakes. As a creative teacher, I taught them many of our games and of course they taught us theirs. A magniﬁcent experience for all with tears all around when we left.

MAILBOX We started a support group two years ago. The six men have early onset Alzheimer's disease and the six wives are the caregivers. We are all taking Ginkgo Biloba (a vitamin from the health food store). The men all attend a social center twice a week for individuals with early onset AD and then we all meet socially on a weekly basis. We all feel we are holding out if not getting better. We have gone to plays, to dances and on vacation together. We support each other emotionally and are now close friends. What is diﬀerent about our group is the young age of the men with AD. At a support group meeting, the men meet in our kitchen and the women, down in the den. Each group is able to talk freely as we each have diﬀerent problems. This is so important. Who but the person who walks in these shoes knows what it is all about? Thanks for your time and thanks for this great newsletter!

Andrea Nold Denver, Colorado Editor's note: Andrea's letter is testimony to the fact that Alzheimer's disease does not have to get in the way of a good time! The recent issue of was received with thanks. All of it is most interesting, and I applaud you for taking up the torch I lit here in Orlando. I do have one request - that we see more from patients themselves, and I pray you receive a great response. Forget Me Never, Diana Friel McGowin Orlando, Florida

Sincerely, Mary and Ron Woods Seaford, New York

Editor's note: Diana has been instrumental in advocating for and establishing support groups for people with early onset

Alzheimer's disease. Her book, Living in the Labyrinth chronicles her experiences of living with a diagnosis of Alzheimer's disease.

particularly for professionals working in this ﬁeld. Multidisciplinary professionals contribute articles about program models, resources, research and other issues that are emerging about early Alzheimer's disease across settings and around the world. For more information on this quarterly newsletter contact Robyn Yale at the address and phone/fax listed below.

We have appreciated your newsletter ! We don't have much geared towards the person with the disease so we find the newsletter very helpful. Sincerely, Heidi Holmes Alzheimer Society for Metropolitan Toronto, Ontario, Canada Editor's note: Alzheimer's Canada recently published a booklet for people diagnosed with Alzheimer's entitled, Look for the review and order information in the next newsletter! now has subscribers in six different countries: USA, Canada, England, Italy, New Zealand and Australia! With a collective effort we can build bridges around the world. We would like to hear of your "perspectives" so that they may be shared with others who are living with Alzheimer's disease or a related disorder. Not all correspondence can be published and some may be edited but we will do our best to reply.

Questions and Answers Q. I've heard that Alzheimer's disease is genetic but nobody else in my family has had it.-----L. Berjowski, San Diego A. There are two general categories of Alzheiemr's disease: Alzheimer's disease refers to cases of AD that do not seem to be linked to genetics or family history. A certain % of those diagnosed with AD fall into this group. Alzheimer's disease refers to those cases where family history or genetics plays a stronger role. About 30-50% of individuals with AD fall into this category. This is

Newsletter for Professionals Just as is directed particularly to individuals diagnosed with AD or a related disorder, we have a diﬀerent newsletter, , designed

currently a very active area of research and information is updated frequently.

they may have forgotten the content that was at the top. Also perceptual and visual changes in the brain may make it diﬃcult to decipher letters or words. Thus reading can become a tedious or frustrating process. When we think of how much we may have relied on the written word for pleasure or for information, the inability to read can be quite a loss. However, help is available through two wonderful resources!

Q. The last newsletter mentioned a new drug ENA 317. Can you tell us more about it?-----M. Siminoff, New York A. ENA 713 is in the experimental stages. Studies around the country (and around the world) are now underway to test whether the drug might alleviate some of the symptoms of Alzheimer's disease. ENA 713 is being studied because like the drug Cognex, it may help to stop the breakdown of an important chemical in the brain known as acetylcholine. Acetylcholine is a chemical that is used by some nerve cells as a means of communication. These nerve cells are some of the first to be affected and to die in Alzheimer's disease. ENA 713 may help to increase acetylcholine in the brain thereby slowing this damaging process. ENA is not a cure for the disease. It is thought to have fewer side effects than Cognex and may have longer lasting effects. To inquire about studies in your area, contact your local chapter of the Alzheimer's Association.

The National Library Service for the Blind and Physically Handicapped produces a talking-books program wherein books and magazines are produced on cassette tapes. More than 67,000 ﬁction and non-ﬁction books are available. A network of cooperating libraries across the country loan these cassette books and the easy to use cassette equipment to eligible readers. Books also may be loaned out and returned through the mail. A reading disability based on Alzheimer's disease or a related disorder makes one eligible for this excellent program. The program is free of charge. For more information on the program nearest to you, contact the National Library for the Blind and Physically Handicapped.

Trouble With Reading? Two Resources Can Help! As Karen Tersoff's poignant poem indicates, it is not at all uncommon for individuals with Alzheimer's disease (AD) to have considerable difficulties with reading. Memory loss can affect concentration and comprehension. Some people report that by the time they have read to the bottom of a page,

A second resource may be through your local Public Broadcasting Stations. Stations across the country participate in radio reading service programs. The stations often provide a special pre-tuned radio receiver. Listeners may then hear readings from the newspaper,

magazines, books or selected programming. A weekly schedule provides the radio programming and is an excellent way to keep in touch with news, literature or current events and topics. Contact your local public broadcasting station for information on program availability in your area. Sit back, close your eyes, open your ears and enjoy!

rejuvenation in even the most serious or trying of circumstances. Individuals diagnosed with Alzheimer's disease or related disorders often talk about how essential it is to ﬁnd humor in the everyday events of life. Indeed, there are physical, emotional and social beneﬁts of humor. In our physical bodies, laughter starts a chain reaction that ultimately releases endorphins into the brain. Endorphins foster a sense of well- being and relaxation. They are also released during exercise. A good belly laugh is a form of gentle exercise as it works out your chest, abdominal and facial muscles and temporarily increases both your heart rate and blood pressure.

Our thanks to Bill McCurdy for informing us of these resources.

Reading’s A Struggle These days it takes the written word Forever to reach my brain. I, who used to read quickly, With enjoyment and pleasure, Now stare down at those black squiggles, Trying to decipher them. Finally I do, but oh so slowly. Sometimes I expect next year's newspaper to arrive before I have read today's. - Karen Tersoﬀ

Volume 1, Number 4: May - July, 1996 The Gift of Humor

When the laughter subsides, your heart rate and blood pressure can actually

Everyone can appreciate a good laugh. Humor can be a source of relief and

drop lower than the pre-laughter state, thus fostering a more peaceful feeling Emotionally, humor provides a way for us to address diﬃcult or threatening circumstances. It helps to relieve stress when we can laugh in the face of adversity or mock what might otherwise be serious situations. Humor can make the world seem a little brighter and bring a lift to our spirit. Sometimes we can also laugh at ourselves and our predicaments. Susan, diagnosed with Alzheimer's disease, shared this experience: "Last week I had a friend drive me home from a meeting. She wasn't so familiar with the area around my house. She asked, 'So, do I go left here?' And I said, 'Do you think I know? You've got to be kidding!' We had a good laugh about it."

Helpful Aspects of Humor and Laughter: Reminds you of the past times Relaxing Loosens up your vocal box Relieves tension and stress Can be a shared activity with others Contagious There's no right or wrong Gives you energy Helps handle embarrassing moments Lifts your mood Helps your appetite Indeed, the group identiﬁed physical, emotional and social aspects of humor. There may be times, however, when humor is not the right medicine. We need to be able to express the wide array of feelings that may surface in the day to day experiences of life. We want to make sure that in our appreciation of humor, we don't also feel invalidated or somehow not acknowledge a serious circumstance. The Rocky Mountain Support Group members spoke to this concern when they added this second part to their discussion on humor:

Socially, humor can be a collective bond that unites people in a shared experience and sense of community. Laughter among friends breaks the ice and often leads to a more relaxed feeling. For those who have access to support groups, participation can often include a healthy dose of laughter. Members of the Alzheimer's Association, Rocky Mountain Chapter Patient Support Group know that humor is good medicine for Alzheimer's disease. They recently identiﬁed the following ways that humor enriches their lives and agreed to share their "perspectives" with newsletter readers:

Humor and Laughter Are Not Helpful When: Directed at someone else Makes someone feel bad When it is making fun of someone Makes someone feel left out If I don't understand it When it is hurtful

know what AD was. With a vague feeling of wasting his time, I had gone to my internist several months earlier, complaining that I was losing my ability to think. I could no longer read a book, because by the time I reached page 3, I had forgotten what was on page 1. I couldn't even remember what I had eaten for breakfast that morning, even though I could remember quite clearly the names of my elementary school teachers. My internist referred me to a neurologist who put me through a series of tests.

When it does not allow for your own feelings When others force you to laugh We aren't always obligated to laugh when someone is trying to be funny! We thank the Rocky Mountain Support Group for their thoughts.

BRAINSTORMING We talked to people diagnosed with a memory disorder and asked the following question: "What do you do when you don't remember someone's name?" Here are some of the replies!

When the neurologist told me his diagnosis, my ﬁrst question was predictable. "How can you be sure? From what I've read, AD can only be diagnosed with surety by autopsy." He assured me that this was not the case. The tests he performed resulted in a diagnosis with 90% accuracy. My heart sank as I left his oﬃce.

"I engage them in conversation long enough so that something jogs my memory." "I tell them I have a memory problem and don't remember names any longer." "I just call everybody 'honey'!" "My wife covers for me by repeating the person's name in front of me while we're all talking together." "If we're going to a family gathering, sometimes before we go, we'll look at pictures and go over names so I can rehearse the names." "I was at a reunion and I just stared at the name tags. Thank God for name tags!" Do you have any other strategies?

My first experiences with AD were frightening. I noticed that when driving, my perception was not clear -at least not as clear as it used to be. Sometimes it appeared to be a problem with depth perception. At other times it was with distortion. I still drive, but only in clear weather. I don't want to be a menace to other drivers. But I realize that the day may soon be at hand when I will have to give up driving altogether. I have read every book, journal and magazine I can find on the subject of AD. It is a most difficult task because of

MAILBOX I just received my ﬁrst issue of I feel there is a great need for a publication such as yours. In November, 1994 I was diagnosed with Alzheimer's disease (AD). I didn't even

my memory problem. But I persevere. I have started a vigorous exercise program. I am determined that I will not allow myself to waste away in despair as so many of my friends have done when stricken with diseases, usually terminal. Although the odds are against me, I will ﬁght it to the last and will go down swinging. I'm scared but I refuse to just give up.

After the list was completed, the group members discussed how and where they would like to share this information with others. The group expressed an interest in sharing their thoughts with your readers. It is hoped that other group participants will initiate similar projects and share knowledge with others as a form of education. We have included a copy of the completed list of opinions. Thanks for your time!

Sincerely, Robert Abramson Alexandria, Virginia

Sincerely, Tracy Puurunen, HBSW Thunder Bay, Ontario, Canada

Editor's note: A thorough diagnostic work-up includes a history and physical, blood work, a neurological exam, a brain scan(usually a Cat Scan or an MRI) and neuropsychological testing. A physician must also rule out depression as the symptoms may look like early stage AD. We share Robert's concern regarding driving. and strongly encourage that all diagnosed drivers be voluntarily re-tested every six months to assure driving safety.

Editor's note: The Thunder Bay Support Group thoughts (see next column) are a beautiful way to begin a dialogue on your "perspectives" of living with AD or a related disorder. Let us hear more from our readers about any advice you may want to add to this valuable list. Not all correspondence can be published and some may be edited but we will do our best to reply. We will publish your name, city and state with the correspondence unless you request otherwise.

We recently started an Early Stage Support Group in Thunder Bay, Ontario, Canada. The group has been a great success and is a valuable form of support. During our last group session, the participants discussed generating a list of advice and opinions about what it is like for them to have Alzheimer's disease (AD), to be shared with others who are unfamiliar with AD.

Advice From Those Who Know These words of advice were generated at the support group meeting for individuals with Alzheimer's disease or related dementias in Thunder Bay, Ontario, Canada (see letter to Editor, on this page).

Acknowledge my disease Don't pretend nothing is wrong I still need my family and friends Keep visiting and stay in contact Don't treat me like a child Let me continue to do the things that I can still do Understand that when I can no longer do the things that I used to do, it is not easy to deal with and I may get upset and frustrated Give me time to do things Learn about this disease Take me seriously Take time to listen Don't stare at me strangely Give me some space And ﬁnally... Remember me!

The booklet reviews the need for a comprehensive examination to rule out other memory disorders and to make the diagnosis of Alzheimer's disease. It then goes on to address speciﬁc questions that arise such as: "What is happening to me?" "Why do I feel this way?" "How can I take care of myself?" "What about the future?" and "What if I live on my own?"

Individuals diagnosed with Alzheimer's disease (AD) often request reading material addressed to their needs and concerns. Most literature is directed speciﬁcally to health care professionals and families and as such, speaks about diagnosed individuals rather than to them. Alzheimer Canada has addressed this huge gap in the literature with their recently published booklet entitled The booklet's readable format makes it easy to refer back to pages as needed for ideas or support. Throughout the publication, the authors convey an empathic yet practical tone which is both helpful and encouraging.

The booklet provides diagnosed individuals with basic information about common experiences and feelings that may occur when diagnosed with AD. It also oﬀers suggestions regarding coping and making life a bit easier.

Remember to inquire at your post oﬃce about postage rates to Canada. You may also want to contact your local chapter of the Alzheimer's Association to inform them of this resource for their library and for distribution to the public.

and thus preventing it or perhaps slowing the progression. For this same reason, the widely prescribed anti-inflammatory, prednisone, is also under investigation. At this time, the benefits of anti-inflammatories are still under close study. It is not recommended that you take ibuprofen on any regular basis except when prescribed for a specific reason by your doctor. Persistent use of anti-inflammatories can also have dangerous side effects that outweigh any proven benefit at this time. We'll keep you posted!

Drug Updates Some of you may have seen a recent news clip on a new drug called Aricept. A Japanese pharmaceutical company has just finished trials of the drug here in the USA. They found that about 25% of those patients diagnosed with AD, who took the drug for six months, had meaningful improvement in memory and other cognitive skills. The drug works in a similar manner as Cognex by inhibiting the breakdown of acetylcholine, an essential neurotransmitter in the brain. However, a benefit to Aricept is that it seems to have fewer side effects (specifically liver toxicity) than Cognex. It will soon be under FDA review for approval. These drugs do not cure AD. However, for some people, they may enhance abilities during the progression of the disease.

We frequently are asked about any therapeutic benefits of vitamin E. There has long been interest in the use of vitamin E as a protector of nerve cells. Alzheimer's disease seriously damages and ultimately destroys nerve cells in the brain. Most frequently, we hear of vitamin E in reference to the use of antioxidants which have a protective effect on nerve cells. A clinical drug trial of a combination of Selegiline and vitamin E has recently been completed in hopes that this may slow the progression of AD. The results of this study have not yet been released. Although there is no evidence that vitamin E will prevent or stop the progression of AD, it is a safe supplement to add to any diet and certainly may have some overall positive effect on health maintenance for neurons. A commonly recommended

Another recent news item made reference to the possible benefits of ibuprofen in warding off Alzheimer's disease or in keeping the progression at bay. Ibuprofen is an anti-inflammatory sold over the counter. As Alzheimer's disease involves inflammation of the brain, there is investigation into the possible benefits of anti-inflammatories on inhibiting this aspect of the disease

dose is 400 IUs, easily purchased at a grocery or health food store. Remember to always check with your physician before starting on any new vitamin or medicine!

VOLUME 2

Volume 2, Number 1: August - October, 1996 Accepting Help: When, What Kind, and Who From? A Perspective on Religion, Spirituality, and Alzheimer's Disease by Tim Brennan Video Review: Alzheimer's Disease: Inside Looking Out Resource for the Disabled May Apply to Alzheimer’s Disease Volume 2, Number 2: November, 1996 - January, 1997 Reflections by Dick Tilleli A Useful Resource: ADEAR Alzheimer's Disease Education and Referral Center I Can Create! Memory Sounds Volume 2, Number 3: February - April, 1997 Coming to Terms with My Illness by Jan Soukup New Publication Available "Progress Report on Alzheimer's Disease, 1996" Bunny's Bag No. 1

The DRC Club Volume 2, Number 4: May - July, 1997 Disclosing the Diagnosis: Who and When to Tell Learning Does Not Have to End by Tim Brennan

establishing trusting relationships and involving people in our life in ways that are new or unfamiliar. The beneﬁts and challenges of accepting help are part of the process of living with Alzheimer's disease.

Volume 2, Number 1: August - October, 1996 Accepting Help: When, What Kind, and Who From? "There are a lot of people who help you in the beginning. That's their job. There are people who very early on in this disease said, 'You must get someone to do your checkbook.' I was not at that point yet. It was very insulting to be told, 'Never mind what you think. This is what I think you should do.' There is a lot of that in these well-intentioned people. I fought like hell -every single step -- in getting help. I'd think, 'I don't need it yet or I don't want it now.' Then eventually I'd think, 'I really do need help now. It won't hurt me,' and I'd get it. I'm always glad when I do get help after all. It's a slow process, I guess." -----Jean The experience of accepting help is, in theory, a positive one. If we have a need, it can be a relief to accept assistance. If we want support, it is reassuring to know that we don't always have to go at it alone. Yet, the process of asking for and accepting help is not always so simple. Accepting help can also involve renouncing a bit of control,

Alzheimer's disease (AD) primarily aﬀects memory. Our memory is closely intertwined with many of our activities and tasks of daily living. Much of what we may think of as automatic behaviors (i.e., dressing, washing dishes, driving,

calculating change at the grocery store, or mowing the lawn) actually require a complicated series of steps and problem- solving which utilize a great deal of memory. This process is disrupted by AD. So, one of the ﬁrst steps in accepting help is the step of acknowledging that AD may impose certain limitations on life. While it is essential to capitalize on our abilities, it is also a positive coping skill to identify areas in which AD may compromise some of these abilities. If we get help with a more challenging task, it can then free up our eﬀorts so we can move on to something more enjoyable. Also, two people can often tackle a problem or job better than one. In accepting help, sometimes a task can be accomplished together.

bank accounts, driving, or working a power tool). ● We are held back from doing one thing because we are unable to accomplish another (i.e., we don't have company over for dinner because we can't make the whole meal ourselves). When it is time to seek help, consider the following steps: ● Identify those family members, friends or professionals whose opinion you trust and respect. ● Work with these individuals to identify and acknowledge circumstances where you may beneﬁt from some assistance. ● Share your feelings about accepting help. What may be lost in the process? What may be gained?

Many people struggle with knowing when it is the right time to seek or accept help. It is always important to keep ourselves challenged and to do as much as we can for ourselves, and for others, for as long as possible.

● Explore from whom the help will be received (i.e., a family member or friend, an agency, or a health care professional). ● When applicable, deﬁne some part of the task you would like to participate in (i.e., reading directions to the driver or washing the vegetables for a salad).

However, there are some ways to evaluate when accepting help may be an enjoyable, supportive, or necessary experience: ● The completion of a particular task is a persistently frustrating, angering, or discouraging experience.

Accepting and receiving help is a lifelong process. In every step of the way, our lives and the lives of others can be enhanced by our ability to participate in this exchange.

● Making repeated mistakes may have signiﬁcant consequences that could endanger oneself or others (i.e., errors in

Poet. We're a jazzy group with a good sense of humor. We get together outside of the weekly support group to have parties and go on outings to parks, the zoo, museums, or each other's homes. Come and visit us sometime!

MAILBOX Dear Editor, We would like to respond to last issue's correspondence from the Thunder Bay Early Stage Support Group participants living in Ontario, Canada: Your "Advice to Others" is very good (see Volume 1 Number 4). You covered almost everything! We would like to add a bit more:

Early Stage Support Group Members San Diego, California Dear Lisa, I am still approached by phone and mail by early onset (younger AD) patients across the U.S., begging for the location of patient support groups near them. I beseech your help. Please publish a request in the newsletter for everyone having such a group to send their name and address to you so we can compile a list. Something should be done about this. Eﬀort should be made to locate the groups that do exist for We the People.

Be patient if I keep repeating myself Make sure that I have a chance to get together with others in my same situation Try to have a positive outlook on things Keep connected with friends And above all else, maintain your sense of humor!

Diana Friel McGowin Orlando, Florida

We're all doing the best we can with our situations and we have to go on from here. We would like to hear more about your group. How many are in the group? What is the make-up of men and women? What are your backgrounds? And what is it like in Thunder Bay? Our group comes from all diﬀerent parts of San Diego. We meet weekly and have 14 participants, 8 men and 6 women. Our ages range from 55-82. We've all had various careers including Editor, Engineer, Social Worker, Air Force, Secretary, Builder, Business, Writer and

Editor's note: This is an excellent idea! We would be happy to help. If you know of any support groups for individuals diagnosed with AD in your area, please send us the location, meeting time and contact person with phone number. We will maintain a list and serve as a resource as needed. Check with local chapters of the Alzheimer's Association for group availability. If one does not exist in your area, ask that one be started!

once recited automatically. The prayers frequently get mixed up with each other. As for the Sacrament of Penance or Confession, it too requires memory. I do not recall when I last went to confession or how many sins I have committed or what, in fact, sin is, especially if it is non-physical. I don't know if I know all manner of right or wrong. It is more of a feeling of right and wrong.

A Perspective on Religion, Spirituality, and Alzheimer's Disease By Tim Brennan Before Alzheimer's disease came along and interjected itself into my daily living, my beliefs in and about God were unshaken. I had learned about God as a child and generally practiced my faith as an adult. I am a Catholic. But, it may be more honest to say that I was a Catholic, for today I am not sure. As memory, logic and intellect slowly erode, so do the outward comforts of my faith. Even the simple act of going to church is hard. The choir sings a number of songs during Mass, and multiple sounds -- particularly in the higher pitch or octave range -- tend to disturb what I would call my mind's harmonic balance. Noise is extremely irritating, and if I am in a setting where there is too much noise for a long time, my brain wants to shut down.

I am less a Catholic now. I didn't mean or want this to happen; it just did. However, God is in my heart. Somehow, He connects to me physically. I think this feeling is called spirituality. There is a sixth sense at work that "feels" his presence. I talk to God because I do not remember prayer. I don't understand how one could become less religious and possibly more spiritual. Yet, this appears to be happening. The possibility is readily accepted because I am less intelligent now and have a greater awareness of things physical. Something is present providing meaning, guidance and encouragement. I believe this influence is external. It is something out of body which, like gravity from an unseen planetary force, is at hand constantly urging dynamics from the me who wants to be inert. My brain wants quiet. It wants to be at rest. But, this influence tells me if I give in to the brain's wishes, I will die a quicker mental death. I believe this influence is God. It tends to go away when I have negative thoughts. It returns when I am at peace or seek peace. Negative

I still take comfort from the touch of a rosary, but don't know how to make it work. I no longer remember prayer I

thoughts or emotions drain me physically and mentally. Positive thoughts permit clearer thinking for longer periods of time.

Our thanks to the Cleveland Chapter of the Alzheimer's Association and all of the video participants for this insightful and encouraging contribution.

Thoughts of this nature remind me that what once was, is no more. Change is necessary, but it is so very diﬃcult to accept. This one hurts. William Allen White once said, "I am not afraid of tomorrow, for I have seen yesterday and I love today." God, how I love today

Resource for the Disabled May Apply to Alzheimer’s Disease

Alzheimer's Disease: Inside Looking Out is an 18-minute video produced by the Cleveland Area Alzheimer's Association. The format of the video allows for individuals with Alzheimer's disease to candidly discuss their feelings and thoughts on living with the disease. Individuals remark on issues including social and family relationships, receiving the diagnosis, decision-making, life-style changes or adjustments, and coping strategies. Family members also comment on their relationships with their diagnosed loved ones and illustrate the crucial role of family support.

In the United States, the Department of Motor Vehicles (DMV) provides disabled parking person placards to individuals whose disability aﬀects their mobility. The placard, placed in a car window, allows the driver to park in designated parking spaces conveniently located in close proximity to store, building, or shopping center entrances. In consult with the DMV, a diagnosis of Alzheimer's disease may qualify a person for such a placard. Some individuals with early stage AD still continue to drive. However, it is not uncommon to hear drivers express concern about forgetting where they parked their car in a vast parking lot or multi-level parking structure. The disabled person's parking spaces are often within immediate view of entrances and exits, thus lessening the risk of having to scout out a lost car!

This is an excellent video that portrays the strength, humor and openness in these diagnosed individuals. It is an excellent resource for Alzheimer's Association chapter libraries or to be used to facilitate discussion at support groups.

Also, individuals with more advanced AD may experience an overall weakness or slowing that aﬀects mobility. Families sometimes report diﬃculty in taking the person on an outing where they may have to park some distance from their destination. The ability to

Video Review

park closer helps to avoid a potentially tiring situation.

Estrogen: An Ongoing Investigation Estrogen is a hormone that may have a protective effect on neurons in both men and women. Research has shown a beneficial effect of estrogen on brain cells and brain chemicals. Brain cells form better connections in the presence of estrogen. Acetylcholine, a chemical that is essential in order for brain cells to communicate information to each other, is promoted in the presence of estrogen. In menopause, women's estrogen levels are markedly reduced, thus leaving them perhaps more susceptible to the kind of neuron damage that exists in AD. Several small clinical studies have shown improvement in thinking and mood measures in women with AD when taking estrogen. Presently, there are two larger scale nationwide studies of estrogen underway to better validate these findings. It is clear that estrogen does not always prevent AD as many women who are on supplemental hormone still acquire the disease. However, researchers are investigating whether it may postpone onset, lessen the rate of damage or enhance functioning over the course of the disease.

A physician's referral is necessary to verify disability. For more information, contact your local DMV.

Research Updates Nicotine in the News Nicotine patches are usually associated with smoking cessation programs. A patch is worn that releases nicotine into the body thereby lessening craving. However, newspapers recently reported that nicotine patches may help individuals with Alzheimer's disease (AD) to have a higher level of intellectual function and alertness. The nicotine may activate certain neurotransmitters in the brain and allow greater communication between neurons - a process that is damaged with AD. Although published studies have indicated that nicotine may produce positive results in memory and alertness, these studies also indicate that use of the nicotine patch can produce considerable increased anxiety and agitation in individuals with AD. Due to this serious and unpleasant side eﬀect, the nicotine patch is not recommended at this time. Researchers hope to experiment with nicotine-like substances that may produce desired outcomes without the negative side eﬀects.

Diagnostics It is not unusual to hear individuals express doubt about their diagnosis of Alzheimer's disease (AD). As the disease can only be diagnosed with absolute accuracy by brain biopsy, physicians are often apt to say the diagnosis is "probable Alzheimer's

disease". Or, in cases where stroke, depression or other complicating factors may play a part in the symptoms, the diagnosis may be "possible" AD. While some people ﬁnd these tentative diagnoses to be more hopeful than absolutes, others may be frustrated that their symptoms cannot be more clearly diagnosed. A diagnosis is often necessary for inclusion in research or drug studies or may help individuals and families gain support in the present or plan for the future. As such, an active area of research is focusing on diagnostic measures that will help to conﬁrm AD by means other than brain biopsy. Areas of investigation include:

whether pupil dilation tests could be used to diagnose AD. To date, several laboratories have tested these findings but most have been unable to replicate them. At present, this test is not considered a valid means of diagnosis. Sweat Test In a preliminary study performed at Baylor College of Medicine in Houston, Texas, 51 individuals with AD and 44 controls underwent a "sweat test". Data from this research suggests that individuals with AD have a distinctly different pattern of sweating than controls. Like any finding, this one must be replicated in other studies in order to determine its validity. The goal of continued research in this area is to determine if these differences in sweating can not only help in the diagnosis of AD, but also in differentiating AD from other types of memory-related disorders.

Lumbar Puncture Two of the hallmarks of AD are the plaques and tangles that develop in the brain. These formations are comprised of different proteins. By doing a lumbar puncture (inserting a needle into the spine to extract fluid), researchers have been able to identify varying levels of these proteins in the cerebral spinal fluid of individuals with AD. While this test can not identify AD with absolute certainty, it can be of considerable help in giving doctors one more piece of evidence with which to make a diagnosis. Pupil Dilation Test About two years ago, a group from Harvard reported changes in pupil dilation between controls (those without AD) and those with AD. This finding led researchers to further investigate

Genetics In the past few years, there have been significant discoveries made in understanding the impact of genetics on AD. Genetic testing can only diagnose AD in rare instances (specific forms of familial or early onset AD). However, researchers are continuing to investigate the influence of Apolipoprotein E (ApoE), a gene which helps to carry cholesterol in the bloodstream. The presence of a certain form of this gene (ApoE4) can markedly increase one's risk of acquiring AD. While testing for

this gene type may help physicians feel more conﬁdent in an AD diagnosis, the research is not yet conclusive enough to warrant a diagnosis based solely on the absence or presence of this gene.

"Sometimes I feel as if I don't have Alzheimer's" Sometimes I feel as if I don't have Alzheimer's. In a way I suppose it's good that I don't remember because I'd be angry with myself if I remembered everything that was going on. I think that although I know I have Alzheimer's, I don't know that it's doing me any harm.

Volume 2, Number 2: November, 1996 - January, 1997 Reflections By Dick Tilleli I was born and raised in Brooklyn. My schooling was done there. Then I went into the service and later, I ran a whole shop fixing the airplanes. That was good for me. I supervised the jobs. I'm a hard- headed Italian and I had enough years there to warrant some respect. At first, I couldn't fathom the changes in my memory. I didn't know what was happening. And I didn't know why it was happening. I felt that although I wasn't ill, there was something wrong with my brain. I didn't know what it was and most of the doctors I went to couldn't help me. Evidently, I probably have Alzheimer's disease. I guess I should have felt it coming on, but I don't know that anyone could feel it coming on. It was a slow thing. I would forget things. For example, I would be working out in the yard. I'd go out to the shed to find a tool and wonder, "What did I come in here for?" I'd get angry because if I was working out there and I wanted a tool, I should know where the tools are.

I can read the paper, I can go for my walks, and I don't get lost. For awhile there, I was trying to get lost. I'd always wind up in an area that I knew, so I'd know how to get out of it. I'd start down one way and I'd think, "This is kind of dumb. I always go on this street. I should go on another street." That made me feel good. I was testing myself a little bit But I didn't tell my wife! I go for my walk ﬁve days a week and then on Saturday, I work in the backyard and Sunday, we go to church. I enjoy my walks. I meet some people I know. I'm not afraid to speak with people because I know I can speak. But in a way, sometimes, it's very embarrassing. You want to say something but it doesn't come out right. I guess there is a problem there that makes me lose my train of thought, and maybe the conversation with people I'm talking with doesn't go well. I think maybe I should cut it oﬀ and let them do the talking. If there is a big party, I join in. I just don't know what to say sometimes.

To be truthful, the only person I really need is my wife. I'm really not afraid of anything because I can rely on her. I wish I could take over and do more for her. There are times when I have a diﬃcult time doing things, and I ask for her help. I guess that's diﬀerent from what it used to be. Years ago, I was the macho man. I was the guy who did everything. Now, she does most things and that I don't like. But it's something that has to be done.

I think that my disease is not as bad as it is for some people and if I continue doing what I'm doing -- going for a walk, going to the park and doing diﬀerent things -- I think that will be better for me. Maybe one of these days someone will throw a rock at my head and get it all straightened up again. But, I've got to keep with what I really know, and what I really can do, and not lie to myself. I need to be aware of my problems.

I used to feel as if I did something wrong to make me get into this situation. I don't really wonder that anymore. I think I'm growing up. When you go to a church and you get on your hands and your knees and you're praying, you think God's going to take care of everything. But it doesn't happen. You still have Alzheimer's disease, or whatever you have. It's just something that happens and I don't think anyone knows why. Sometimes I start feeling sorry for myself. But I just take it as it comes. If I knew for sure that something would cure me, I'd go for it. If somebody would no longer have the disease, that would be the greatest thing.

I guess there are times when I lean on my wife a little bit. But, other times, I feel like I'm right and she's wrong! I've got to win sometimes! If something doesn't turn out like I think it should, I get angry. I don't have a mean temper. But sometimes my wife wants me to do something and if I want to do something ﬁrst, we might have an argument. Most of the time she's right but sometimes I just want to do what I want to do. I'm the man! Alzheimer's disease makes me feel stupid but not less of a man.

I assume something is happening but, I also assume that it's not as bad as it could be. If I could stay at this range, I could live out my life. Instead of sitting and watching TV, or going to bed in the middle of the day, I go outside and dig some holes! Make yourself do

something. Stay active and do it. Plant nice ﬂowers and pull a lot of weeds. It doesn't mean you'll get rid of your problem, but at least you'll be doing something.

upcoming conferences, or whatever speciﬁc area of interest you may have. Like librarians, ADEAR staﬀ search their holdings, and send you a list of all of the resources or publications that may address your area of inquiry. Some literature may be purchased directly from ADEAR or you can call your local library or bookstore to obtain the recommended references.

I think if we get in a group with other people and start talking, we can talk about things that are happening to us. Talk to each other. Nothing bad could happen. I don't feel that I'm any diﬀerent from anyone else. I feel that this stupid thing that I have is not going to get any worse. I've got to ﬁght it. Fight it by working, being around nice people, and being out there with the neighbors.

MAILBOX Dear Lisa, Thank you for the opportunity of reaching out through the Perspectives newsletter. I really enjoy the articles, especially the Mailbox section and applaud Diana Friel McGowin for speaking up for "We the People." She is a special person. As far as I know, there is not a support group for early onset AD patients in Austin, Texas so I want to start one. My primary care doctors are helping by getting me on the right path to ﬁnd others with related dementias. But, I need your help also. Myself, I have been a question mark for the past year. Diagnosis is pre-senile dementia and there must be others out in our area in the early stages of Alzheimer's or a related dementia that wish to join a new support group. Anyone wishing to take part can please write to me and then a meeting place and time will be set. Thank you once more. Patricia Wood Austin, Texas 78715-1294

A Useful Resource: ADEAR Alzheimer's Disease Education and Referral Center Established by the National Institute on Aging, ADEAR is a clearinghouse authorized to collect, catalogue, and distribute information concerning Alzheimer's disease (AD). ADEAR serves as a resource for diagnosed individuals and their families, health professionals, and the general public. Through a simple phone call, ADEAR staﬀ will respond to requests for information about the diagnosis and treatment of AD, available services, updates in all areas of research, resources speciﬁcally for early stage or early onset diagnosed individuals,

Dear Editors, Our Greater Hartford, Connecticut Chapter of the Alzheimer's Association has been trying to start a support group for individuals diagnosed with Alzheimer's disease but we have not had any takers! If anyone in our region would like to be a part of a group, please call me!

Editor's Note: Patricia makes reference to both early onset and early stage AD. Early onset, (previously called "pre-senile dementia"), is used when AD begins prior to the age of 65. Early stage refers to the progression of AD and describes individuals who are only mildly impaired, but may be of any age. Dear Perspectives Readers, Our group has only ﬁve members and they have indicated that they would welcome a few more but would not like a crowd.

Sincerely, Becky Flowers Alzheimer's Association Hartford, Connecticut Dear Perspectives Readers, We are currently offering a five-week support group for persons diagnosed with Alzheimer's disease and their caregivers. The first week, we all meet together and discuss the disease from a medical perspective. The remaining weeks, we are separated into two groups, caregivers and early stage persons. In these sessions, we cover feelings about the disease, ways to assist with memory loss, legal and financial issues, community resources, and sharing common problems. During the fifth week, we join again and discuss activities that can still be done together. Both caregivers and persons afflicted were very grateful for the group and were sad to see it end. We plan to offer the group throughout the Columbus area to make it convenient for individuals in surrounding communities. If readers have any

We meet alternate weeks and usually talk only about current issues for them, and their feelings about the world of Alzheimer's. However, on a few occasions, we have read some items from Perspectives in the group. It was interesting and comforting to know that there were groups of similar people elsewhere, and that people with dementia were willing to talk to others about their situation. None of the group members wanted to write to Perspectives themselves but did suggest that I, as group facilitator, write a book! So although this is not a book, we say "HELLO" from almost halfway across the globe to group members in your part of the world. Mike Livni Alzheimer's Association Northcliﬀ, South Africa

suggestions or comments, please do not hesitate to contact me.

Questions and Answers Q. We saw a health food store advertisement about a supplement called Enada that is supposed to improve symptoms of Alzheimer's disease. What is it and does it work? -----Mary Woods, Seaford, New York

Sincerely, Julie Demko, LSW Alzheimer's Assoc. of Central Ohio Columbus, Ohio Editor's Note: In answer to the request for a registry of support groups for diagnosed individuals, we have received correspondence from all over the United States and Canada on established groups. So far, all of these groups are sponsored by a regional chapter of the Alzheimer's Association. Feel free to contact us here at Perspectives if you would like a list of these groups or call your local Alzheimer's Association for more information on your local resources. Ask to speak with the person in charge of support groups. If there is no group in your area: 1) Ask that one be started!

A. Enada is the brand name for a coenzyme called nicotinamide adenine dinucleotide or, NADH. Derived from brewer's yeast, NADH has been investigated by Jˆrg G.D. Birkmayer, M.D. at the University of Graz in Austria. In a preliminary trial with 17 Alzheimer's patients, Birkmayer found that 10 mgs of NADH a day improved patients' cognitive and behavioral functioning. While this may be hopeful, Birkmayer also notes that his "open label" trial did not include a control group, nor was it a "blinded" study. (In a double- blind study, participants have a period of receiving drug and a period of receiving placebo. Participants are cognitively tested throughout the trial. Neither the participant or the researching physician are aware of when the participant is on placebo, or when they are on drug. As such, there can be no bias by either the participant or the researcher when evaluating the results.) Birkmayer cautions that his ﬁndings are not deﬁnitive and must be replicated in a double- blind, placebo-controlled study to be truly valid and reliable.

2) Leave your name and number and ask the staﬀ person to begin a registry of interested people. 3) If there are not enough people in your region to start a full group, ask your Alzheimer's Association or health care provider to try to connect you with any other individuals in your area who may want to meet informally. People may not know there is a need unless you make your voice heard!

Q. A commonly asked question:

I've lost my sense of smell. Is that a part of Alzheimer's disease?

Both diagnosed individuals and their families can share in the realization that while the process of AD may involve losses, the creative process can bring many new discoveries and gains. One form of expression is through poetry. To create poetry, staﬀ work with up to 12 participants at a time, all seated in a circle. The group picks a theme and then poetry related to the theme may be read to inspire ideas from group members. One by one, participants reﬂect on the theme and contribute a related phrase or statement. These contributions are then arranged to create a poem. The following poem is inspired from the theme of sounds remembered in childhood. It is a compilation of each individual's memories as well as a testimony to the poetry that can be created when individuals with AD come together and form a collective voice.

A. Some decrease in smell is a normal part of aging. However, with Alzheimer's disease, (AD) the loss is often more significant. Our sense of smell is regulated by our olfactory bulb which is located next to the hippocampus in the brain. The hippocampus, where we process memory, is usually the first area to be affected by AD. Scientists think that due to its close proximity, the olfactory bulb may also be affected even in the very early stages of AD. Thus both the abilities to detect and to identify smells are impacted.

I Can Create! An arts program for people diagnosed with Alzheimer’s Disease or a related disorder In the metropolitan Portland area of Oregon, individuals diagnosed with Alzheimer's disease (AD) gather at St. Aidan's Place and Trinity Place Social Centers. Through the guidance of staﬀ and volunteers who understand both the arts and AD, participants learn that they can create. Arts programming at these Centers includes music, movement, visual, and language arts. Through a variety of creative projects, program participants have the opportunity to express their feelings, thoughts, and memories, as well as build relationships with others.

Memory Sounds

Volume 2, Number 3: February - April, 1997

My brother and I used to run beside the train in Montana... remember the horn?

Coming to Terms with My Illness by Jan Soukup Editor's Note: Three years ago, Jan shared the following remarks with the audience of the Alzheimer's Association's 13th Annual Dinner. We are grateful to Jan and the Cleveland, Ohio Chapter of the Alzheimer's Association for permission to reprint her remarks.

We played on the sidewalks of New York... remember the noise? I listened to hens laying eggs... remember the quiet? Mother stirred porridge in the kitchen way before it got light; the rooster crowed us back into life... remember the dance of the chickens?

It was just about this time three years ago I recall laughing with my sister while in dance class at my turning the BIG 40. "Don't worry Jan, life begins at forty," she exclaimed and then sweetly advised her younger sister of all the wonders in life still to be found. Little did either of us realize what a cruel twist life was proceeding to make. It was a fate neither she nor I ever imagined someone in our age group could encounter.

Shod horses pulled the milk cart and the driver broke into song... remember the beat? The school bell rang at 8:30 and the chapel bell walked me through the green meadows. I used to fall asleep to the sound of water tumbling through the sluice...

Things began to happen that I just couldn't understand. There were times I would address friends by the wrong name. Comprehending conversations seemed almost impossible. My attention span became quite short. Notes were needed to remind me of things to be done and how often to do them. I would slur my speech, use inappropriate words, or simply eliminate one from a sentence. This caused not only frustration for me, but

Remember the crickets? Remember the sound of night? Composed by Participants of St. Aidan's Place

also a great deal of embarrassment. Then came the times I honestly could not remember how to plan a meal or shop for groceries. One day, while out for a walk on my usual path in a city in which I had resided for 11 years, nothing looked familiar. It was as if I was lost in a foreign land, yet I had the sense to ask for directions to my home. There were more days than not when I was perfectly ﬁne. But to me, they did not make up for the days that weren't. I knew there was something terribly wrong and after 18 months of undergoing a tremendous amount of tests and countless visits to the doctors, I was proven right.

employee. She had self-conﬁdence and enjoyed life. She never imagined that by the age of 41, she would be forced into retirement. She had not yet observed even one of her sons graduate from college, nor known the pleasures of a daughter-in-law, or held a grandchild in her arms. Needless to say, the future did not look bright. The leader must now learn to follow. Adversities in life were once looked upon as a challenge. Now they're just confusing situations that someone else must handle. Control of my life will slowly be relinquished to others. I must learn to trust -completely.

Dementia is the disease they say; cause unknown. At this point it no longer mattered to me just what the cause was because the tests had now eliminated the reversible ones, my hospitalization coverage was gone, and my spirit was too worn to even care about the name of something irreversible. I was so confused and felt so alone -- and I didn't want to hear their advice that the support I so badly needed was available at the Alzheimer's Association.

An intense fear enveloped my entire being as I mourned the loss of what was and the hopes and dreams that might never be. How could this be happening to me? These questions occupied much of my time for far too many days. Then one day as I fumbled around the kitchen to prepare a pot of coﬀee, something caught my eye through the window. It had snowed and I had truly forgotten what a beautiful sight a soft, gentle snowfall could be. I eagerly dressed and went outside to join my son who was shoveling our driveway. As I bent down to gather a mass of those radiantly white ﬂakes on my shovel, it seemed as though I could do nothing but marvel at their beauty. Needless to say he did not share in my enthusiasm.

I was angry! I was broken and this was something I could not ﬁx, nor to date can anyone ﬁx it for me. How was I supposed to live without myself? I wanted Jan back! She was a strong and independent woman. She always tried so hard to be a loving wife, a good mother, a caring friend, and a dedicated

To him it was a job; but to me it was an experience.

Drug Update Aricept Arrives! In November of 1996, the FDA approved Aricept as a treatment for Alzheimer's disease (AD). The drug should be widely available in pharmacies by February 1st. Aricept requires a physician's prescription. Aricept acts in a similar manner as Cognex (the only other FDA approved drug for AD) to maintain levels of Acetylcholine in the brain.

Later, I realized that for a short period of time, God granted me the ability to see snowfall through the same innocent eyes of the child I once was, so many years ago. Jan is still there I thought, and there will be wonders to be held in each new day. They will just be diﬀerent now. Since then, my husband and I have been fortunate enough to participate in a program the Alzheimer's Association provides called "Something For You." It was there I truly began to come to terms with my illness. They have made a profound diﬀerence in both of our lives. They actually taught us about the disease; informed us of research that is underway; and helped us understand legal decisions that must be made. We can vent our anger, have comfort when in tears, and share in the great healing power of laughter. New friends have also been made; people undertaking the same challenge in life as ourselves and because of this we will never feel alone again. Ignorance truly does breed fear. I can not say that I am no longer fearful, because I am aware of the probabilities my future holds. However, because of the Alzheimer's Association, my fears are subsiding and hope has been restored to my heart. I would like to thank them for the gifts of love, laughter, and support they have given me and helped to restore in our family.

Acetylcholine is a neurotransmitter that is essential in the communication of messages between neurons. Acetylcholine levels are diminished by AD. Aricept will not slow the progression of AD, but it can help to enhance cognition and functioning for a period of time for some people. Aricept has some benefits over Cognex. It has far fewer side effects. The drug is more easily tolerated and does not require such intensive monitoring by a physician. Also, Aricept is taken only once a day, unlike the four times a day dosage of Cognex. This simplifies medication management a great deal. Aricept comes in 5 and 10 mg. dosages. Patients usually start on a 5 mg. dose and move up to 10mg. This gradual increase in dosage helps limit some of the possible side effects including nausea, diarrhea, or vomiting.

new drug Aricept is approved and then I'll try it. I would like to share some ideas with others that are helpful for me: Do the most diﬃcult things in the morning. Take a nap. I feel energized after a nap. Take walks or do aerobic exercise.

MAILBOX Dear Editor, My name is Linda Raymer. I am 55 years old. I have known since November, 1994 that I have early onset Alzheimer's. I am looking forward to receiving the Perspectives newsletter. The public is unaware of early onset Alzheimer's. They think that Alzheimer's occurs only in the elderly. Sadly, doctors don't always recognize that it exists. It is encouraging to know that your newsletter may further awareness. Also, it will help those of us with AD to better cope by sharing our experiences.

Clothing: Have less choices of clothing. Assemble "outﬁts" in closets or drawers, instead of separating "tops" and "bottoms." If everything is separated, there are too many choices, and I can't decide and get frustrated.

I belong to an Alzheimer's patient support group. This group and my family, especially my husband, are a valuable source of strength and support. I suspect I am doing well for several reasons that are proving to help delay or prevent further setbacks. Before I was diagnosed, I was physically and mentally active. I took 800 I.U. of vitamin E for ten years prior and Estrogen for three years prior. I am currently taking Cognex at four 30 mg. tablets a day. At ﬁrst, I couldn't tolerate this 120 mgs. a day. I had nausea and near fainting and vivid nightmares. I knew at least 120 mgs. a day was necessary for results. I was able to tolerate it by increasing the 80 mgs. a day to 120 mgs. a day by adding 10 mgs. a day until I succeeded. I ﬁnd that I am now thinking more clearly. I have decided to stay on the Cognex until the

Dinners: Cook 2 dinners at the same time. It won't be any more diﬃcult than making one. They will last for at least

three days, possibly four. Heat them in the microwave. I prepare simple things, usually meat, potatoes and a vegetable. I usually use the slow cooker. This way, if I don't have to think about cooking, then doing the laundry or cleaning the house isn't a problem.

Marilyn Trabert 2100 Tice Valley Blvd. Walnut Creek, CA 94595 Dear Editor, I was so moved by the last Perspectives. Dick Tilleli's statement was so honest and touching. It was such a wonderful issue. Eleanor English San Diego, California

Cleaning: I used to clean the entire house in one day. Now I clean one room a day. This, along with dinner already prepared, saves valuable mental energy. The bottom line here is: simplify. It's not an easy thing to do. It takes time. Some of it is uniquely individual. I hope these ideas will help others.

Dear Editor, I am attempting to begin a PATIENTS' ON-LINE SUPPORT GROUP through America On Line (AOL). I have assistance from support group facilitators and willing folks now and ask that you announce this in the Perspectives newsletter. To participate in this group, one needs a computer with subscription to AOL. For those who are interested, please contact me either by letter, phone, fax or online. Diana Friel McGowin 1015 Ferndell Road Orlando, Florida 32808-6107

Sincerely yours, Linda Raymer Warren, Michigan Dear Editor, We love Perspectives newsletter and read it in our support group at the DRC Club. The women love to hear things written by people who come from the same boat they are in. Marilyn Trabert, M.A. Program Director, DRC Club Walnut Creek, California Editor's note: See page 7 for Marilyn's article on her innovative program for women with early stage Alzheimer's. If you or your local Alzheimer's Association would like more information on this program, Marilyn has published an excellent guide to starting such a group. It is available for $12.00 (payable to the Diablo Respite Center). Send check to:

New Publication Available "Progress Report on Alzheimer's Disease, 1996" Published by the National Institute on Aging and the National Institute of Health, "Progress Report on Alzheimer's Disease, 1996" provides up to date information on the most important areas of investigation in Alzheimer's medical

research and inquiry. Highlights include: ● advances in diagnosis, treatment, and prevention ● identifying risk factors for AD ● understanding inherited early-onset AD ● recognizing changes in the brain that occur before symptoms appear

recipes have been tried and "perfected" by Bunny herself. Alzheimer's disease has put Bunny in a diﬀerent role in the kitchen, but with the help from her husband Joe, Bunny continues to produce culinary delights like baked stuﬀed lobster and "crazy chicken." Joe notes, "She instructs us on how to do everything." Joe helps by chopping, cutting and working with the oven, all under Bunny's close supervision.

Bunny's Bag No. 1 Bunny Mechaber is in the early stages of Alzheimer's disease, but that doesn't keep her out of the kitchen! Her husband Joe recalls, "Bunny was really known as a gourmet cook. We'd invite people over for dinner and never get invited back to their houses, because they were afraid that we would compare their cooking to Bunny's." So when Bunny began looking for a way to give back to Harvard University's Radcliﬀe College, her Alma Mater, she naturally turned to cooking. She has compiled a cookbook entitled Bunny's Bag No. 1. Proceeds from the sale of the book will go directly to the Harvard Scholarship Fund.

Both Joe and Bunny attend the Alzheimer's Association's monthly Early Stage Support Group. "We are glad to belong to the Early Stage Support Group," Joe says, "because it helps my wife, the Alzheimer's patient, and me to better understand the needs of the Alzheimer's person. Without this program, one would not know where to turn for advice. We appreciate the support of this group." About twenty-eight couples currently participate in the Early Stage Support Group program. Early stage support groups help to lighten the load on both the Alzheimer's patient and the caregiver. By providing an open forum for a discussion of the problems and solutions others have encountered, persons aﬄicted by Alzheimer's disease are given a sense that they are not alone and that support will be available at every stage of the disease. Our Alzheimer's Association chapter seeks

"Cooking has been my bag since age ﬁve," Bunny writes in the Introduction to the book, "when I began absorbing what cooking was all about from my mother. My mother was a wonderful cook." Recipes have been compiled from friends and acquaintances, domestic as well as foreign, and all

to help the individual sustain a productive and normal lifestyle throughout the early stages of the disease.

in a group like a family. We can go to places we cannot go alone, and we don't get lost!" Aline: "I'm aware that I am losing larger and larger chunks of memory. This is what happens. I lose one word and then I can't come up with the rest of the sentence. I just stop talking and people think something is really wrong with me. I'm among the world's most fortunate persons. It has to do with this little club I belong to that is here to help me and many others. The discussions are great and the activities are wonderful. Thank you for having this here today when I need it. I've had a lousy week but being here with you has helped me feel better."

Submitted by Michael Paddock Alzheimer's Association Rochester, New York

The DRC Club By Marilyn Trabert, M.A. The DRC (Diablo Respite Center) Club is a support group and socialization program for women in the early stages of Alzheimer's and other dementias. The club strives to enable participants to live in the moment - to experience the joy of now. The value of each moment is measured by the pleasure of sharing thoughts and feelings with close friends and in the mutual enjoyment of social activities. The group meets weekly for support group discussions and a variety of interesting field trips and social activities. Over the years, the women have made comments about their experiences and feelings about belonging to the club: Ronna: "You have to get out. You can't sit home and feel sorry for yourself. The DRC Club has been very good. It encourages everyone to face the world, to survive. With friends, you can share; you have more confidence in yourself. Each friend is different; you get help from each one. We go to so many interesting places, and it's so well-organized. It is great to go out

Patty: "A few years ago I helped someone who had Alzheimer's (Patty is a nurse) and thought to myself 'I think I have that too.' But the doctor couldn't tell yet. The DRC Club is a saving grace for me. I don't feel sorry for myself as much as I used to, and I don't cry as much. I have good friends with this group. Life goes on." Betty: "When the words escape me it's like trying to catch a star. Just when I think I've grasped a word or thought, it disappears into thin air. I think our club has helped to alleviate my depression. I'm learning to 'live in the now.' " For many participants, the DRC Club becomes the focus of their life. The Club helps participants get through a diﬃcult time by validating their feelings and by helping them realize that they are not alone, that they have friends who care,

and that they can retain the essence of their individuality by living in the moment.

ignoring your problems or invalidating your concerns. However, when the diagnosis is Alzheimer's, it is likely that there are a few close family members or friends who have acknowledged that something is happening. While there are no set rules in this process, it is often helpful to share the diagnosis with these trusted individuals. Although the news may be diﬃcult, sometimes everyone feels a bit of relief just to have the problem deﬁned. Disclosing the diagnosis also means that you, your family, and your friends may be able to better utilize community or medical resources directed towards the better understanding and treatment of Alzheimer's disease.

Volume 2, Number 4: May - July, 1997 Disclosing the Diagnosis: Who and When to Tell Any time we receive a piece of news, whether heartening or discouraging, we go through a process of deciding with whom and when we will share the information. In the case of good news or relatively impersonal information, these considerations may be minimal. But when the news is a diagnosis of Alzheimer's disease it is not uncommon to hear individuals weigh their disclosure with a great deal more consideration.

Some diagnosed individuals see their disclosure in terms of heightened public education and sensitivity training. Diagnosed at age 52, Grace feels it is important for the public to be aware of the many faces and dimensions of Alzheimer's:

"Although the news may be diﬃcult, sometimes everyone feels a bit of relief just to have the problem deﬁned." A number of questions arise such as: "Who do I want to tell? Do I have to tell anyone? At what point should I bring this up? How will people respond?" One of the steps in disclosing a diagnosis is to comes to terms with the information in your own mind. Many individuals may doubt the diagnosis or just need a period of time for the news to settle in. Family and friends may also go through periods of denial by

"I tell everybody! It's nothing to be ashamed of. People need to know that we're just like them. The other day, I was in Nordstrom's and I was in line to buy my dress. The cashier was making mistakes and joking, 'Oh no, I must have Alzheimer's!' When I got up to the register, I looked at her and I said, 'I do have Alzheimer's.' I think she was pretty embarrassed that she had joked about it."

too. They don't know what to do. People don't know how to deal with it."

Public awareness of Alzheimer's disease is invaluably enhanced by individuals willing to be open about their diagnosis. However, while some people struggle very little with the notion of disguising their condition, others may try to conceal the information longer in order to maintain their own self-concept: "I don't care who knows or doesn't know. I don't try to hide it. Well, yes I do. I do try to hide it. You make a mistake or something and you try to hide it. I think it's natural. You don't want to appear to be less than you want to be. You want to appear as strong as you could be."

Many people may be familiar with this woman's experience. Ignorance and uncertainty often breed fear and avoidance. However, sometimes the opposite can be true. One man laughed as he discussed the response of others on board a small cruise ship when he and his wife disclosed his diagnosis: "They wouldn't let me out of their sight! I couldn't even go to the bathroom alone without someone trailing after me!" Indeed, as public recognition of this disease continues to grow more prominent, many people have a story to relay of a kind stranger oﬀering assistance once the diagnosis of Alzheimer's was disclosed. This can be particularly valuable in circumstances where you are lost or in danger, such as from a car accident or a fall while on a walk.

Sometimes accepting the existence of changes or mistakes to ourselves is one of the most challenging tasks we can face. It can make the process less stressful when we can rely on a few caring or understanding people to see us through the adjustments. Sharing the diagnosis may begin that process: "If you know that you are talking with someone who knows something about the disease, who is familiar with it, it's a very diﬀerent thing. There is a safety net and understanding when you talk with people who understand your condition." However, people with AD often express concern about how they will be treated if others know of their diagnosis: "Everyone acts like they don't want to get near me because they might get it or catch it

(Note: Many ﬁnd a "Safe Return" bracelet to be an excellent safety net for these

unforeseen circumstances. Information about your diagnosis is discreetly placed on an identiﬁcation bracelet that you wear at all times. The special bracelet will be recognized by paramedics or police oﬃcers in an emergency. Call your local Alzheimer's Association about this program).

what is going on and to express how I feel about it."

What is important is to respect your own needs for privacy while also acknowledging the value of allowing selected others to know of your condition. Sometimes you may ﬁnd that your spouse or family member has shared your diagnosis without your consent. This can lead to mixed feelings -- perhaps anger that you were not in charge, or maybe relief that it was done for you. Remember that your family will also need their own support in this process and sometimes need to share the diagnosis so that they can receive assistance. In any time of change, most of us want to know that we will be able to ﬁnd a few caring and listening ears. Diagnosed at age 70, this woman's words could be equally true for the person with AD or their family member: "I've told my friends about Alzheimer's disease. They are very quiet. They don't know what to say. I don't know what to say. I think they understand because I'm telling them why it is so hard and the impact that the disease has. They listen. I don't expect them to respond any more than I could have responded two years ago before this happened to me. I don't expect more than to really have an opportunity to say

You can't always predict how others will respond to your news and sometimes we all just take our chances. While it may be true that some people will shy away when they hear the word "Alzheimer's", it may also be true that new friends may be made as a result of sharing the diagnosis. Who knows? You may be talking with someone who has just been diagnosed too!

"What is important is to respect your own needs for privacy while also acknowledging the value of allowing selected others to know of your condition."

Drug Update: Results of Selegiline/Vitamin E Study Look Promising The Alzheimer's Disease Cooperative Study (a nationwide group conducting drug trials) recently completed a trial examining the ability of selegiline and vitamin E (2,000 IUs a day) to slow the progression of Alzheimer's disease (AD). These drugs were chosen because they serve as "antioxidants" and protect the brain from damage that can occur to brain cells. Individuals with moderate impairment were chosen to participate in this two-year study. Participants received either selegiline alone, vitamin E alone,

both drugs simultaneously, or a placebo. To measure participants' responses to the treatments, the researchers used both cognitive testing (measuring memory and thinking) and functional measures (examining among other things, ability to do one's own grooming or remain living in one's own home). Participants did not show improvement on cognitive measures. However, all those who received vitamin E or Selegiline did show improvement on functional measures by delaying some indications of functional decline by about six months. Vitamin E and Selegiline were equally as eﬀective, and combined treatment with both drugs was not better than either drug alone. Selegiline must be prescribed by a physician but vitamin E is readily available in grocery or drug stores. Many individuals with AD report that they are already taking vitamin E in smaller doses. These ﬁndings may certainly tempt people to increase their dose or to begin on vitamin E as a supplement.

● High doses of vitamin E may exclude you from participation in other drug trials. There are a number of drugs currently being investigated for treatment of AD. Some of these may show benefits far greater than vitamin E. Without individuals willing to participate in these studies, researchers will not be able to find effective medicines Remember, Cognex and Aricept are only available now because people volunteered to participate in the drugs' investigational trials. ● If you are currently participating in any investigational drug protocol, you must inform your researchers of any intent to take over 400 IUs of vitamin E. Use of this vitamin in conjunction with study participation may jeopardize the study, and your continued participation. We are grateful to Leon Thal, MD, primary investigator of the Alzheimer's Disease Cooperative Study, for his consultation on this article.

While we do not want to be discouraging regarding use of vitamin E, we do want to oﬀer a few words of caution:

MAILBOX Dear Editor, Some time in late 1994, I started to have memory loss and I started to get agitated easily after being under stress for long hours.

● Always check with your primary physician before using a dose of vitamin E higher than 400 IUs. While vitamin E is well-tolerated by most, it can have adverse eﬀects for some people in such high doses.

By early 1995, I was out of stressful situations and my memory loss was still there. I still got agitated and I could no longer work a normal eight-hour day. Then I decided to see a neurologist. After several months of continuous deterioration, I realized that I could not function the way I used to. In late 1995, after I had taken several tests which included a brain scan and memory test, the doctor determined I had dementia. The doctor prescribed Cognex and Lethicin. Even now, with the help of the medication and a change in my routine, including selling my business and including peaceful hobbies such as gardening and woodworking, I still have a terrible time with names and sentences. Nevertheless, I have succeeded in working shorter periods of time and then resting. This allows me to become less anxious and less aggravated in any given situation.

Lafayette, Louisiana

My sleeping patterns continue to be irregular. I am looking forward to the next visit with my doctor to see whether he will recommend a higher dosage on my current medication or a switch to the new medication, Aricept.

I thought it would be of interest to let you know that a group like ours exists. President Reagan, I wish you well. You are most welcome to visit our group on any Wednesday morning.

Editor's note: The following letter was sent to President Reagan by a member of the Early Stage Support Group in La Jolla, California. She would like to share the letter with readers. Dear President Reagan, My name is Lillie Burjoski and I have been diagnosed with Alzheimer's disease. I have read you have been also diagnosed. I live in the beautiful city of La Costa, California in the northern section of San Diego county. Every Wednesday, I attend a meeting at the Alzheimer’s Disease Research Center in La Jolla. We talk about our feelings and hope for a cure very soon. Our meetings help us, and certainly me, to cope with our problems and our feelings. I am the sarcastic one in the group, only to make people laugh, and they do.

Yours very truly, Lillie Burjoski La Costa, California

I have accepted my condition as being God's will and I hope to enjoy several more years. Even if I am entering the stage of second childhood, I am determined to make it a happy childhood.

Learning Does Not Have to End By Tim Brennan People I meet frequently ask, "What is it like to have Alzheimer's disease?" I have thought about this question quite

Eddie Domingue, Jr.

often and at some length. I have come to believe there is no ready or quick answer.

Later, as I came to realize that a healthy, fully functional human being uses only 10-15 percent of the brain's capacity, I started to think of the mind as a leaking bucket. The leaking water represented dying or dead brain cells that contained speciﬁc pieces of knowledge or a general capability. If I could just pour more water (knowledge) into the leaking bucket (brain), then couldn't I prolong or extend my mental lifespan? My theory was that the leaking bucket would take longer to run dry if I kept pouring water into it. Perhaps I could access some of the brain's unused capacity.

Because brain cells are dying at different rates and affecting separate areas of memory, logic, and intellect in each person with the disease, the answer will differ somewhat from one person to another. I can only answer that question by telling you how the disease affects me today. At some point, I will not be able to describe today. I am so very fortunate. Peggy tells me, based on what we now know, I have had Alzheimer's for five or six years. By this time, some patients are not able to answer yes or no to a simple question. Yet, I speak and it is a miracle.

The leaking bucket theory oﬀers some hope for both the caregiver and the patient. People think an Alzheimer's patient can not learn. I know that's not true.

Sometimes it is a struggle to talk or write. Then the mental fog will lift and for a time the words are there, scrolling past my mind's eye like a Wall Street ticker tape or a song from a sing-a-long movie.

I ﬁnd I can not relearn a lost task or function. For example I tried to relearn how to tie my shoelaces. Each day, I would practice tying them. Towards the end of the day, I could tie them without much of a problem. The next morning, I would wake up and not remember how to tie them again.

When I ﬁrst started to write about Alzheimer's, I thought of the disease as an hourglass, with each grain of sand contained within the sphere representing a brain cell. As the grains of sand fell to the bottom of the hourglass, a little more of our mental life span would be lost. Time became a bitter enemy.

Yet, I have learned how to do new things. I give speeches and write. I shoot pool and listen to novels on cassette tapes. I didn't do any of these before Alzheimer's.

It could be coincidental, but in the process, neuropsychological testing indicates that the rate of progression of my disease has slowed. Now I think of time as a lifelong companion. I am so grateful for today. Today there is hope.

on Tape. I also get the Reader's Digest through the same program." --Bill "If I get troubled, I get out my watercolors and paint it out until the demons are gone. Then I write at the bottom what I was feeling." --Amanda

BRAINSTORMING

"I am in a group that translates Greek poetry. It's taking me longer than it used to but I still enjoy it very much." --Miriam

Many individuals diagnosed with Alzheimer's disease speak of the value of staying involved in meaningful activity. While some previously enjoyed activities may be more challenging due to memory impairment, people still can ﬁnd numerous ways to stay engaged in life and to keep their minds challenged. We asked a number of diagnosed individuals:What do you do to keep your mind stimulated?

"I am volunteering at the Adult Literacy Program. I can be around people and also give something back to the community." --Arlene "I like to go to cultural events, like concerts." --Stuart

Here are some of the answers!

"I do crossword puzzles in the newspaper and I take notes every week at our Alzheimer's support group so we have a record of what we talk about. I also knit pot-holders and dishcloths." --Lillie

"I did the taxes! I have a computer program that helps. I use the computer for everything." --Burt

"I don't think I do enough to keep my mind active. I probably should be doing more!" --Ron "I read a lot -- mostly war mysteries. My wife comes up with a lot of things for me to do!" --Bob "I can still take charge of the checkbook. That keeps my mind challenged!" --Evelyn

"Every week I have a Newsweek magazine that I listen to through Books

"My husband is in theater so we go to the theater a lot." --Betty

meet others and be involved in activities together.

Many people include attendance at a support group or other structured program as a signiﬁcant part of their activity. In the presence of others, we are stimulated by conversation, participation in projects or perhaps, a special outing together. More and more opportunities are surfacing for diagnosed individuals who wish to

Call your local Alzheimer's Association for any programs that may be available to you in your area. If there are no programs, ask that one be started! Even if you do not have access to special programs, it is clear from the "brainstorming" responses that people can be inventive in ﬁnding meaningful activity of all kinds. Write to us and let us know what you do to keep your mind stimulated.

VOLUME 3

Volume 3, Number 1: August-October, 1997 Doing My Best by Ron Bachrach Patient Support Groups: Now Online Ways to Live with Alzheimer's Disease Travel Tips I Keep Forgetting Things Volume 3, Number 2: October, 1997 -January, 1998 Facing Fears and Finding Peace by Linda Raymer Hope and the Experience of Alzheimer's A Communication Barrier Book Reviews: Alzheimer's: The Answers You Need Just For You- For People Diagnosed with Alzheimer's Disease Volume 3, Number 3: February - April, 1998 Activity and Alzheimer's: Enhancing the Quality of Life A Conversation with Bobby

Update On Drug Treatments for Alzheimer's Disease by Jody Corey-Bloom MD, PhD 1997 Progress Report on Alzheimer's Disease Setting Music to Memory Loss: An Alzheimer's Song is Born The Alzheimer's Boogie Every Day's a Great Day Volume 3, Number 4: May - July, 1998 Ideas About Alzheimer's by James W. Anthony A Visit to the Doctor I Can't Remember

mental acumen is declining. I try to put it in the back of my mind, but I can't always do that. So my wife has all of my aggravations and all of her aggravations. I know she cares and that she's with me. She helps me. If I mess up, she won't let me be exposed. But she's suﬀering too. And I'm suﬀering for her because I would like to do more and relieve her shoulders of her working so hard. She has her own business. Her work is also her therapy to get my problems out of her mind. I'm sure there is some of that.

Volume 3, Number 1: August-October, 1997 Doing My Best By Ron Bachrach I was born in Los Angeles but I met Eileen and she lived here in San Diego. So, when we got married, we moved down here. Eileen's my wife, and I love her to pieces. She tolerates me and my Alzheimer's is getting worse, so I just hope she continues to tolerate me as this progresses. I feel bad that she has to endure my moods but we're working our way through it.

I was in the liquor business. Then I left the liquor business, and went into the building business. But for the last couple of years, I've been retired. I had no choice because once I became aware of my disease, I just had to accept it. It's hard, but I couldn't get a job.

"All I can do now is be as good as I can. I can't be any better." There are times when I have cried on the phone with my wife. I was just so emotional about something. It doesn't happen very often. I feel bad when I get upset at her because I know she has her own frustrations.

I do volunteer work now in a skilled nursing facility. I can isolate me from the residents, knowing at the same time that maybe someday I'll be in a home. But I feel good about helping, and it overcomes the negative portion. I forget all about it. I'm just another volunteer helping other people. And that's good.

It's tougher for a wife with our disease because we sometimes repeat things. We get angry at ourselves and this carries through to them. I feel like my

It makes a big diﬀerence. I just want to hold a person's hand and talk to them a bit. These aren't things to be closeted up. These are real live people who had a bum break.

want to take a chance. I don't want anyone to get hurt. People with Alzheimer's need to try to get everything they can out of life while they're able to think. Try to pretend a little bit. Just pretend. Like I happen to have this disease, but when I go to the nursing home, I don't have it. I'm only thinking of helping people. I'm not worried about me. I'm only thinking of how I can help somebody, or do something to make them laugh. Try to live a good life and at the same time be charitable to other people. Don't necessarily do to others as they do to you.

There are a lot of people in these homes. It's sort of eerie knowing that I could end up in the same spot, but that's the way life is. And yet, when I see my kid's wedding pictures or a birthday party for a child, I see the excitement, and it's great. That's what real life is. The one thing I know is that I treasure my family. The whole family, from kids, to grandparents, to cousins. My goal is to see grandchildren. Now that would be great. I've always loved the family unit. It's extremely important. My mother-in-law lives around the block. I love to go over there about every day just to check in on her. She's 87 years-old, and she makes cookies for me all of the time. It's really something. She's really great, and a neat lady.

Editor's note: This essay is edited from a long conversation with Ron Bachrach in 1995. Since that time, Ron has stopped volunteering at the nursing home primarily due to transportation diﬃculties. However, he has been a member of a weekly patient support group for the past two years and has met a number of new friends there. He continues to bring his spirit of caring and good will to this group. Also, true to his wish, Ron has lived to see his ﬁrst grandchild born July 4, 1997 and is thriving on being a grandparent!

All I can do now is be as good as I can. I can't be any better. If I burn the toast then I get mad at myself. I get mad at myself about the double oven here in the kitchen, too. Every time I try it, I always screw up. I don't know why. It's so easy. But, I'm not thinking the right thought for it to work! I don't know how to digest the information. It drives me bonkers! It's very frustrating! And sometimes, I really get scared. That's why I don't drive any more. I don't

Patient Support Groups: Now Online Two opportunities now exist for individuals diagnosed with Alzheimer's disease who have computers and have access to America On Line:

● Take the initiative with people. Invite them to do things with you. Call them or visit them. ● Keep learning about Alzheimer's disease. ● Participate in an adult day program. ● Take inventory of your talents and favorite activities, and incorporate these into your daily life. ● Be a volunteer. ● Walk the dog, or go for a walk yourself! ● Listen to your favorite music. ● Draw! Paint! Do artwork! ● Write letters to friends and family. ● Swim! Dance! Go hiking! ● Keep a positive attitude, and don't ever give up! ● Live day-to-day, but set goals. ● Plan to see the year 2000!

For individuals who can access a computer independently, a "patient support chat group" is available. This group is open to the diagnosed individual only, and provides an opportunity for conﬁdentially sharing concerns with others who are diagnosed with Alzheimer's disease. The second chat group is for individuals with AD who need assistance using the computer (i.e., help with typing or conveying their message), but may want to communicate with other diagnosed individuals. This group is referred to as a "couples" group in that it allows for the assistance or participation of a spouse or other family member. These groups are not formally aﬃliated with, or endorsed by any charitable organization, medical, academic, or religious institution.

MAILBOX Dear Editor, I enjoyed the recent Perspectives newsletter, especially the "Brainstorming" column and "Disclosing the Diagnosis Article." Tim Brennan's article was also very good. He is in our support group. He and his wife Peggy have been an inspiration to all of us. The newsletter is discussed and passed around at our meetings.

Ways to Live with Alzheimer's Disease The Colorado Rocky Mountain Chapter of the Alzheimer's Association has a support group for individuals diagnosed with Alzheimer's disease that meets in the city of Denver. These dynamic group members oﬀer readers some suggestions for getting the most out of life:

Recently, my husband and I moved into a diﬀerent home. It was the right thing to do, but it was diﬃcult for me. Preparing for the move, I felt that I was pacing myself in making decisions

● Reach out to others. Push yourself and don't be shy!

about what to keep and what to discard. We shopped for new furniture. Something that should have been enjoyable turned into a nightmare. I was worried that I would hate my choice, or that I had made the wrong decision. After three weeks, I developed a bad fatigue till I could do nothing. I also had diﬃculty sleeping.

from the solutions that help to overcome them if they occur. The reason that I am better now is because of my husband Richard. A supportive partner is a necessary part of an Alzheimer's victim's survival. He is loving, calming, and most of all, patient. He takes my burdens away. For every problem and worry I have, he has a solution. He will make the decisions and choices. I tell him about my worries and feelings, and he dispels them before they overwhelm my brain. I know there could be troubling days ahead, but because of Richard, I will get through them. I'll be able to not give up, think positively, and survive. I don't know where he gets his strength, and I thank God for him. I am truly blessed.

All of this culminated into devastation. I feared leaving the familiarity and security of my previous home. Our new home was in disarray, and the job of organizing it seemed impossible. I was no longer the optimistic, positive thinking person I used to be. Typical of Alzheimer's victims, I sat in the dark alone holding my head, unable to stop the activity inside. I was overwhelmed. I asked God to make it stop and go away. There was too much input into my brain. I feared that I had advanced to another stage of the disease. I felt like running away, I suppose subconsciously thinking that I could run away from my problem. It seemed easier to give in, not ﬁght it, and let my mind go numb. Just before that point, I felt God sent me the answer.

Sincerely yours, Linda Raymer. Clinton Township, Michigan Editors' note: In our day-to-day work we often hear patients express tremendous gratitude for the assistance and support of their spouse, family or friends. It is so helpful and necessary to let these very important people know how much they are valued and appreciated!

I had been presented with too many choices and decisions to make. How can I choose furniture, and what to keep and discard, when I can't shop for groceries, deal with repairmen, or handle ﬁnances? My experience can help victims and caregivers to avoid the situations that I experienced, and beneﬁt

Dear Editor, I was diagnosed with early-onset Alzheimer's disease in August, 1996, and have been on Aricept since it was released. I have seen much improvement in symptoms since. I also

tried Cognex but it was not helpful because of the side eﬀects. I have no known side eﬀects from Aricept. Also, taking medicine once a day is better for all of us at this stage.

Dear Editor, It seems to me that there is a strong need for a description of the recent congressional acts dealing with Alzheimer's. In particular, "Kassen-baum-Kennedy," and emphasizing the impact on income taxes. I have seen some descriptions, but they have been poorly written and have left me more confused than before. An article in your newsletter would be most welcome.

I am still able to do much, and want to do all I can for as long as I can to help with ﬁnding the cause and cure for this disease. I feel we can contribute much to research, as we are living this maze. Let us help to bring about change necessary in all areas of the knowledge and understanding of what we are experiencing. Early diagnosis was a blessing to me. I could make future plans, and hopefully help to relieve my family of those decisions. I am 54. Gratefully, Glenda Sollis Poplar Bluﬀ, Missouri

Thank you, Robert Abramson Alexandria, VA 22315 Editor's Note: We are always pleased to receive requests for articles or newsletter contributions, and we thank Mr. Abramson for bringing up this very important piece of legislation. As many of our subscribers are international, we opted not to use newsletter space on an item that would not pertain to other countries. As such, USA subscribers will ﬁnd an added insert in this issue that outlines this tax legislation clearly. Mr. Abramson's letter reminds all of us, regardless of nationality, of the importance of staying updated on the workings of our government!

Editor's Note: For those interested in participating in research, make sure to contact your local chapter of the Alzheimer's Association for referrals to any opportunities in your area. There are research programs aﬃliated with universities, as well as in private biotechnology laboratories, in locations all around the world. Your participation in these programs is exceedingly valuable in aiding scientists in their quest for treatments and a cure.

Dear Editor, Your newsletter gives a diﬀerent "perspective" on the disease. It's good to hear from those aﬄicted -- to know and learn more about where they're at! Mahalo! Debbie Ishado

Hilo, Hawaii

progression are not necessarily diﬀerent across the two groups. Individual disease progression and presentation can vary considerably within all age groups. What may be evident, however, is that early onset AD is, in many cases, caused by genetic characteristics that are diﬀerent from those of later onset AD. Scientists are hard at work to understand these distinctions in hopes that they may illuminate the pathway towards treatments, cure, or disease prevention.

Editor's note: We welcome your "perspectives" so that they may be shared with other readers. Not all correspondence can be published, and some may be edited, but we will do our best to reply.

Questions and Answers A frequently heard question: Q. What is the diﬀerence between early stage and early onset Alzheimer's disease (AD)?

Q. Within three days of starting 5 mg. daily of Aricept, my husband and I both noticed a diﬀerence for the better in him. His speech and his ability to write improved. How are others responding to the medication? Nancy Haapaniemi Farmington, MI

A. Early stage AD refers to a range along the continuum of disease progression. People in the early stage of AD are only mildly impaired by the disease. Age is not a factor. One can be of any age and be in the early stage of Alzheimer's. Since we are diagnosing AD earlier and earlier in its course, many people may remain in the early stage of AD for a number of years. Unlike early stage, early onset AD is deﬁned by the age at which the onset of symptoms occurs. Any individual diagnosed with Alzheimer's disease before the age of 65, is called early onset. People with early onset AD constitute less than ﬁve percent of those diagnosed with the disease.

A. Just as the course of AD varies from person to person, so does the eﬀect of the new Alzheimer's medication, Aricept. We hear a great deal of feedback from patients and family members about responses to the drug, but there is no one consistent story. Some patients report feeling brighter and more able to recall memories. Some comment that the medicine seems to make their feelings, whether sadness or elation, seem more intense. Others do not experience these eﬀects. Some patients report an improvement in symptoms upon initially starting the medicine, but don't notice a lasting

It was once thought that early onset AD and later onset AD were two diﬀerent diseases. Scientists now know that both groups have the hallmark plaques and tangles of AD and the course and rate of

● Check with your doctor to see if it might be helpful to carry a sleeping medicine to be used if needed. Many people report diﬃculties sleeping when in new areas. ● Drink plenty of ﬂuids! Travel can be dehydrating, thus exacerbating memory and concentration problems. ● If you are going to see old friends or family, review photographs prior to the trip as a memory refresher!

effect. Others continue to stay on the medicine feeling that it is helping them to "plateau" and not progress in the disease as rapidly. Physical side effects also vary from person to person. Each individual may react to medicine a bit differently. This is why scientists are continually investigating new drugs. If one doesn't work, we always maintain hope that another one will!

Travel Tips August is a busy travel month for many people around the world. But whenever you travel, and wherever your end destination, a few tips can make your journey a safer and more enjoyable experience: ● Have identiﬁcation with you at all times. One form is a bracelet through the Alzheimer's Association's "Safe Return" program. Call your local chapter for information on this resource for people with AD. ● Pack lightly when possible. Too many items and bags create more opportunities to lose things! ● Simplify your travel itinerary. Staying in a diﬀerent place each night can be disorienting and fatiguing. ● Ask your pharmacist for a 7-30 day (depending on length of trip) pill organizer. This eliminates carrying multiple pill bottles, and can assist with taking medicines on schedule.

I Keep Forgetting Things I keep forgetting things: Which letters I've answered, Whether I turned the stove oﬀ. But I keep remembering things, too:

Faces, places, Sights, scents, sounds. It's annoying not to know where I left my glasses, But it's lovely to have always, right behind my eyes, A picture of my daughter at three, Hair glinting in the sun, Looking up at me, Asking: "Do butterflies have puppies or is it the other way around?" I can recall perfectly the sound of a foghorn, Off the coast of Maine, Though, as the family will tell you, I sometimes don't hear the phone. I remember graduations and weddings, And picnics and parades, The way a fresh-cut lawn smells, The taste of apricot jam. Help me to be happy about what I remember, Instead of fretting about what I forget. I'd rather relive love than find my glasses. (But, of course Lord, I wouldn't mind if you wanted to give me a hint).

was a favorite of my son's when he was a child. The story is told by Grover Monster, the Sesame Street character. Having Alzheimer's disease and experiencing new symptoms brought back memories of the book. Knowing how the disease can progress can be frightening. In the story, Grover implores the reader not to turn the page. He is afraid of monsters and if the page is not turned, he won't get to the end of the book and the monster won't appear. Of course the reader turns the pages until Grover discovers that the monster at the end of the book is himself; lovable Furry Grover Monster. He is so embarrassed to realize he had nothing to fear all along. The anticipation was worse than the reality. Not unlike living with Alzheimer's disease. I am 56 years old and I was told I had early onset Alzheimer's disease at age 53. I am knowledgeable about the progression of the disease. It's natural to fear that a new symptom means deterioration. The reality is that this is not necessarily true. It is only a new symptom, but frightening nonetheless. In some cases, a new symptom can be caused by stressful situations and prove to be temporary.

Author unknown. Our thanks to Nora Brenner, editor of the Northern Nevada Alzheimer's Association newsletter, for permission to reprint this poem.

Volume 3, Number 2: October, 1997 -January, 1998 Facing Fears and Finding Peace By Linda Raymer There is a children's book titled "The Monster at the End of This Book". It

The disease will progress, that is real. But instead of fearing the unknown and what might be, I will think positive

thoughts. Like Grover, my monster exists in my imagination and what I create it to be. Reality is in my control: The reality of good days and what I can do; the reality of my loving, supportive family, who make life easier for me. Instead of fear, there is hope and peace.

which Merton speaks. Yet, while his message offers both wisdom and guidance, it is not always easy to embrace the challenges offered by a given situation. Sometimes we are thwarted by spells of discouragement, fear, or disillusionment. Hope may feel a bit elusive. Recently, members of the San Diego Alzheimer's patient support group discussed the theme of hope, and illuminated the many different ways that hope can be experienced and inspired during challenging times. Sometimes the experience of hope can feel fundamental to our very existence. Gloria, inspired by Socrates famous words "I think, therefore I am," had her own rendition,

Hope and the Experience of Alzheimer's The ushering in of a new year, and the holidays that precede this event, often speak to themes of hope. Hope is a belief in what is possible. It is often the sustenance that nourishes us during diﬃcult times.

"I hope, therefore I am." Since Alzheimer's began, her identity is not always based on what or how she thinks, but rather by her positive attitude towards what life still has to oﬀer her. Indeed, hope can be found in the very act of existing, as Jim remarks,

The philosopher Thomas Merton is quoted as saying, "You do not need to know precisely what is happening or exactly where it is all going. What you need is to recognize the possibilities and challenges oﬀered by the present moment and to embrace them with courage, faith, and hope."

"Waking up each day gives me hope!" Although any disability can be exasperating and discouraging, most people ﬁnd it is essential to stay engaged in life -- to maintain activity that will keep us stimulated and challenged, or remind us that there is still enjoyment to be discovered in the

Surely Alzheimer's disease (AD) poses one of those uncertain circumstances to

world around us. Many people with AD can be prone to periods of depression or withdrawal. The motivation to be active can wane a bit. But as John so aptly states,

hope. None of us will go through life without signiﬁcant challenges and when embraced by others who are in the same boat, we can feel strength in a group that we can't always sustain in isolation. The Alzheimer's support group members frequently speak to the value of each other’s' company. In Bea's words,

"Keeping active, getting around and doing things gives me hope because if I don't keep doing things, I mope." The ability to see the potential for opportunity in each day is one of the foundations for hope for many people facing diﬃcult circumstances. While one often has to meet challenges headon in order to address them, problem-solve, and move on, there are often threads of strength, creativity, and caring woven into one's approach to challenge. While we need validation of, and support for, the very real demands in life, these enduring threads are what ultimately hold us together. Gary summarizes this well,

"People coming together, and having everyone hoping together and thinking this way as a group, helps a lot." For those who do not have access to a group, Rene speaks to another invaluable source of support, "I get hope from my grandkids and my family."

"Looking on the positive side of things gives me hope. The negative doesn't do any good." Sometimes when we are unable to feel hopeful, we need others to oﬀer encouragement, or to shed a brighter perspective on a situation. This does not mean fabricating falsehoods to make us feel better, or denying the circumstances with which we are faced. Rather, the presence of someone else who understands our concerns and situation can, in and of itself, provide

Many ﬁnd hope in seeing the growth and maturity of those children or grandchildren that they have helped to usher into the world. The company of family can inspire hope that in the face of one's own illness or mortality, an extension of life continues on.

For those with limited or disconnected family, it can be very comforting to establish a sense of extended community -- a network of even one or two signiﬁcant people who you know will see you through the ups and downs, and with whom you can share your hopes and your fears. True communication and understanding between people is one of the most powerful ingredients in a recipe for hope.

ways to alleviate fear, and to enhance the quality of life for those living with AD. Indeed as Richard states, "You're always afraid of this really terrible disease if you don't have hope." This past decade has brought much reason for hope via a wide variety of new supportive and educational programs that can provide encouragement to diagnosed individuals and their families. Your local Alzheimer's Association can assist you in accessing programs in your area. Also, those who work in long-term care are developing far more loving, creative, and digniﬁed ways of caring for individuals whose disease is very advanced. When we can feel encouraged that we will be able to be in the presence of loving and caring people who understand our condition and needs at all stages of illness, we can feel more hopeful about the future.

Another ingredient frequently added to the tonic is an awareness of work underway to treat or cure AD. In Susan's words, "The medical studies and research gives me hope." Scientists are continually researching new medications to slow down disease progression and to enhance functioning. Many individuals are currently taking Cognex or Aricept (the two federally approved drugs specifically for AD) and new drugs are currently under investigation. In the last decade, there have been tremendous advances in Alzheimer's research. Each new finding builds on previous ones, and scientists are optimistic that as their knowledge grows, each advance towards prevention or cure will be more significant.

With the boom in communications technology, people around the world are collaborating and sharing their discoveries, ideas, and experiences related to the many aspects of AD. Everywhere in laboratories, community settings, support groups, households, and in the day-to-day exchanges we all share with each other, we can ﬁnd seeds of hope that will nurture us throughout life -- the hope that poet Emily Dickinson so eloquently expressed: Hope is that thing with feathers

As science moves forward, so do other areas of research that are investigating

That perches in the soul And sings the tune without the words And never stops at all Thanks to Erika Fry, Kathleen McCurdy, and Ron Cole, LCSW for sharing information that inspired the support group discussion and this subsequent article.

when faced with needing assistance and the whole event can become a very grumpy experience for all involved. In a recent study, researchers found that playing background music that mimics sounds of nature, and an intermittent snack of a favorite food can ease the whole bathing/grooming experience. Many previously agitated individuals were soothed by the music and snacks and the whole eﬀort was easier on everyone. Chalk one up for munchies and Mother Nature!

Research Updates Gingko Biloba in the News A recent study published in the Journal of the American Medical Association (JAMA) reports findings that a daily regimen of ginkgo biloba extract can briefly stabilize, or in some cases slightly improve, mental performance in people mildly impaired by Alzheimer's disease. While these findings will likely prompt further study of the natural herb, a number of the study participants did not show any significant positive effect from gingko and as such, the effects do not seem to be consistent for everyone. However, there do not seem to be adverse side effects to ginkgo and this prompts many people to give it a try and hope for the best. Remember, it is always important to notify your doctor of any supplements that you are taking.

MAILBOX Dear Editor, I'd like to hear more about studies being done on the benefits of estrogen for men. Thank you, Mildred Siminoff Dewitt, New York Editor's note: There continues to be a great deal of interest in the possible beneficial effects of estrogen in protecting or enhancing cognitive abilities in women at risk for, or diagnosed with, Alzheimer's (AD).

The Soothing Eﬀects of Nature and Food As Alzheimer's disease progresses, the processes of bathing and grooming can be very challenging and irritating. The multiple steps involved can be exasperating and people often need help. Some diagnosed individuals become both frightened and angry

Research is not deﬁnitive in this area but looks hopeful. However, for men, estrogen therapy is not currently a well investigated option as it can result in a number of feminizing side-eﬀects such as breast development and hormonal imbalance.. Work is underway on the testing of a non-feminizing estrogen compound that

could be beneﬁcial for use in men with AD. We will keep you posted on any updates.

communication. Sometimes, I'm about to say something that is very important to me and it's nearly impossible to transmit the information because everyone listening has the presumption that what I'm about to say is unscrewed. There's essentially no way for me to convince anybody that although I'm aﬀected by Alzheimer's in many ways, there's still a lot that's up there in my mind that has reason to be communicated!

Dear Editor, I'd like to hear more about activities for people with Alzheimer's disease. Sheﬀy Eloul Los Angeles, California Editor's note: Meaningful activity is a critical part of everyone's life. It becomes particularly essential for individuals with AD who may have had to give up some previous activities and are seeking new interests. Next issue, we will feature an article on activity and AD.

"The main problem is that I start to say something and suddenly I don't know what I'm trying to say." I'm aware that my mind may slide in and out. But for the most part, I can tell when it's working or not. Some days are worse than others.

Dear Editor, I am starting a support group for those of us in the early stages of AD. It is co-sponsored by the Northern Virginia chapter of the Alzheimer's Association. If you live in our area and want a support group, call 703-532-8899 and ask for Pam King.

The main problem is that I start to say something, and suddenly I don't know what I'm trying to say. I don't know how to say it, and whatever I was trying to say is gone. The subject matter, the means of communication, the words I'm about to use next, they disappear. It's nerve-wracking. No, that's the wrong phrase. It's outrageously exasperating! Just murderous! Sometimes my wife LaRue will start talking about what she thinks I was going to say when I lost it and sometimes she can switch right on it. But, other times she's wrong, and I just feel destroyed when I can't transmit my idea.

Pam King Alexandria, Virginia Editor's note: Good work Pam!

A Communication Barrier by Dick Barlow Lately when I talk to people I say, "I'm Dick Barlow, and I'm the Alzheimeree." It seems my main trouble is with

But maybe the next day I'll remember what I wanted to say. And then I have to be careful because if I switch over to the thought that I just now remembered and start talking about it, I am highly likely to lose track of any other conversation we might presently be having. I have to quickly decide whether to switch and talk about yesterday's thought because it may not last long. But sometimes if I even stop long enough to tell La Rue that I remember what I wanted to say yesterday, by then, I've not only lost that memory, but I've lost track of what we were just talking about today! There's not a thing I can do about it.

enjoy life to the extent we can. That's all that we can do.

Book Reviews Alzheimer's: The Answers You Need By Helen D. Davies and Michael P. Jensen Written by Helen Davies, Co-Director of the Stanford/Veterans Administration Alzheimer's Center, and Michael Jensen, a secondary caregiver for his father-in-law who had Alzheimer's disease, this invaluable book is the ﬁrst to address the numerous questions that arise with newly diagnosed or early stage Alzheimer's disease. The clear and succinct answers to over 100 commonly-asked questions give the reader both straightforward information as well as sound and respectful advice. The book can be read cover to cover or can be used as a reference to address questions as they arise. Questions and answers cover themes including medical issues, family concerns, coping, social relationships, activity, disease progression, legal and ﬁnancial issues, and treatment. They vary from "Is Alzheimer's disease hereditary?" to "How can I keep my sense of humor?" The authors have a great deal of both professional and personal experience.

I also lose things. This is so common that I go to LaRue and tell her what is missing and where I think I put it last. It isn't rare for her to say, "Oh, that's over there." She'll go straight to it. She simply goes there and picks it up and hands it to me and it could have been in plain sight. Sometimes I feel so exasperated! I just want to explode. LaRue is grateful that my rage doesn't get vocal and fall out all over her. She marvels at this all the time. She is perpetually thunderstruck that I can retain any humor in this at all. I'm a little thunderstruck that she can ﬁnd a little humor sometimes, too. But, screaming and hollering and pulling my hair out is not going to help. So we do what we can with what we have, and

As such, this book speaks to questions they have heard directly from diagnosed individuals over the years and the answers, while direct and realistic, oﬀer both reassurance and hope that there is

a life well worth living in the face of this challenging diagnosis. While the authors acknowledge the changes that will be brought about by Alzheimer's disease, their answers allow readers to know that there are ways to plan, and that one does not need to go through this process alone.

Volume 3, Number 3: February - April, 1998 Activity and Alzheimer's: Enhancing the Quality of Life "To eﬀect the quality of the day; that is the art of life." --- Henry David Thoreau "It was quite a blow when I realized I had Alzheimer's. I have a friend who has Alzheimer's and the minute she found out she had it, she quit going anywhere because she said, 'Well, I just can't cope with it.' And I said, 'Well, that's silly because the only one who can change your situation is you!' So, I keep busy. If you're going to sit at home and say 'poor me', that's exactly what is going to happen and I don't let that happen to me." ----- Millie, age 72

Just For You- For People Diagnosed with Alzheimer's Disease

Henry David Thoreau and Millie have something in common: They both believe that they can have an impact on the quality of their lives. While Millie is firm in this conviction, others find that Alzheimer's disease (AD) poses an enormous challenge to this fundamental belief. Sometimes when faced with a difficult illness, it is hard to feel motivated to engage in any activity. A period of apathy or withdrawal can set in as we attempt to cope with the changes imposed on our lives.

Published by Alzheimer Canada Almost two years ago we introduced our readers to this 10-page booklet which provides individuals with helpful information about common experiences and feelings that may occur when diagnosed with AD. It also oﬀers suggestions regarding coping and making life a bit easier.

However, many find that throughout all of the adjustments, there are many ways to find pleasure and meaning in life. Also, we may find that there are other

interested and caring people who enjoy the opportunity to participate in these activities with us. One diagnosed man expressed the importance of others in helping him have a high quality of life with AD: "Life having Alzheimer's disease can be very good. The help of a concerned person is invaluable."

She introduces us to Key Point #2: Try to incorporate physical exercise into your daily life. Many people with AD ﬁnd enjoyment in physical activity. Movement releases endorphins in the brain that can help elevate our mood, ease stressors, and give us energy. Among the favorites we hear mentioned are: swimming, walking, bowling, playing tennis, or working in the yard. Many people with AD speak to the importance of friends and family: "Being social is also important to me. I like to go out to eat or to the movies with family and friends."

So, Key Point #1 is: Identify the concerned person or people in your life. These people will be instrumental in working with you as you identify and implement your plans for activity. Although it can be diﬃcult to accept help or advice, even from someone who cares about us, it can also be a relief to not face challenges alone. We may not always like it when someone suggests things for us to do. We may be reluctant at ﬁrst, or worried to try. But chances are, when a concerned person makes a suggestion, it can be important to your physical and mental well-being to challenge your reluctance and give it your best!

This leads us to Key Point #3: Make sure some of your activity involves interaction with others. Although changes in memory or language can aﬀect our level of ease in social situations, it is important to practice both expressing and/or listening to conversation. This may be more easily done with others who have the same condition:

Sometimes when the problems on our mind become the focus of attention, it is easy to overlook the importance of maintaining good overall physical health. One woman describes her strategy to meet this need: "Walks help me to get exercise which I know is important. It also gives my husband and I time to talk."

"The weekly meeting of our local Alzheimer's support group is the highlight of the week for most of the members of our group."

In conjunction with a support group, or when one is not available, interactions with understanding friends can be rewarding as well:

Association for more information on this invaluable program. Sometimes we also need time for a little peace or solitude. Excess stimulation can cause everyone's nerves to feel on edge. Key Point #4: Make time for quiet activity that is engaging, while also being relaxing. Books on Tape is an excellent resource for those who have difficulty reading and is available through most libraries. Others enjoy watching television or videos, listening to music, doing jigsaw puzzles, drawing and other crafts, or looking through photo albums or scrapbooks. Some find that keeping a journal or occasional notes about their day-to-day experiences is a helpful way to quietly reflect on one's thoughts and feelings.

"My wife and I play cards with friends. The social part is important and I also think that playing cards helps to stimulate my brain." It may be easier to socialize around a particular event such as an outing to a park, zoo, museum, movie, play, or concert. This takes the emphasis oﬀ of verbal communication and allows for enjoyable companionship based on a shared experience. Activity with others can foster a sense of community and belonging that may otherwise be limited for many people diagnosed with AD. Although Alzheimer's may impose limitations, travel is still important to many diagnosed individuals. Memory loss increases the risk of becoming disoriented or overwhelmed when in a new place, and some people recognize the increased responsibility that this places on their caregiver. As such, shorter "weekend away" trips or a visit to more familiar territory such as the home of family or close friends can be preferable. It is often wise to practice with a few small trips to see how everyone adjusts before venturing out on a larger or longer journey. Remember to wear a "Safe Return" identiﬁcation bracelet in case of an emergency. Call your local Alzheimer's

Most people enjoy feeling helpful to others, or productive in some way, and include the importance of caring about others in their recipe of activities. Key Point #5: Consider ways in which you might be able to help others. Some individuals enjoy taking care of a pet or doing a household chore or other task to help their spouse, family, or friend. Others ﬁnd meaningful volunteer work in their community through local churches, health organizations, senior centers, or community service groups. The desirable type and amount of activity will vary from person to person. What is essential, however, is that we recognize that in the face of Alzheimer's disease, there are still many ways in

which we can engage in the world around us. This group of diagnosed individuals in Denver, Colorado summarizes with a bit of sage advice: "Do things that are fun and enjoyable and surround yourself with active people. Keep trying. Know your limitations but don't give up. Do the things that you can do."

from the San Diego Support Group about hope is exactly the way I feel. I am pleased to know that so many people with Alzheimer's disease are hopeful and keep a positive attitude. I hope my contribution to the newsletter helps others also. Recently I came across a quote that is inspirational to me and keeps hope alive: "Look to this day for yesterday is but a dream and tomorrow is only a vision, but today, well-lived , makes yesterday a dream of happiness and tomorrow a vision of hope. Look well, therefore, to today."

Apparently Henry David Thoreau and Millie have some like-minded friends! Our thanks to Marcia Reish, MSW and the members of the Denver, Colorado early stage support group; Peggy Bargmann RN,C and members of the Greater Orlando, Florida early stage support group; and to Norman Hansen, director of The Company - a club for men experiencing memory loss in Walnut Creek, California,- for their invaluable contributions to this article.

Sincerely yours, Linda Raymer Clinton Township, Michigan Dear Editor, Thank you very much for publicizing eﬀorts to start our early stage support group in the Alexandria, Virginia area. I appreciate your help. I am enclosing an Alzheimer's prayer written for me by my daughter, Cheryl Burrill, in hopes that it might touch others too. Lord, give me FAITH today To do my very best... Lord, give me CLARITY When my mind is put to test... Lord, please give SIMPLICITY And growth in every way... That I accept, yet not give into The struggles I must face... Lord, give me PATIENCE When things I can't recall... Lord, give my family

MAILBOX Dear Editor, I wish your newsletter would have been available when my mother was ﬁrst diagnosed with AD. The newsletter is very informative and helpful for all of us. Thanks for all you do! I loved the Grover story from the last issue. This was also one of my daughter's favorite books. What a wonderful outlook Linda Raymer has -a lesson for us all. S. Ostrom Coeur d'Alene, Idaho Dear Editor, The recent edition of Perspectives was encouraging to me. The contributions

Understanding of it all... And more than anything I ask I pray, stay close to me... And allow me to live With continued DIGNITY.

antsy about it. But it probably doesn't bother me as much as it should! I have asked two or three people, 'Am I losing my mind?' Then they will ask me, 'Why do you ask that?' And I say, 'Well I'm forgetting things that I should be remembering and I just don't feel good about it.' And they say, 'Oh don't worry. It happens to everybody.' But, if you can't ﬁnd your memory, it hurts.

All best wishes, Pam King Alexandria, Virginia

A Conversation with Bobby Edited by Lisa Snyder, LCSW I grew up in Oklahoma. I was born there and we always had all kinds of pigs (which I hated), cows, and various other living things. I have a sister and a brother who still live in Oklahoma. We lived about two miles from Red River, which separates Oklahoma from Texas. We used to go to the river a lot after school. We'd all take our groceries and walk down and go get wet if it was hot and just have fun. Even the teachers went. It was something we always did starting around April.

On the other hand, if someone says something and I don't like it, I just turn my head and walk away, and I have forgotten it in five minutes. Oh, I do think there may be a benefit to forgetting sometimes! What hurts is people telling you that you can't do something when you know you can. I lost my driver's license. I'm not angry anymore. But, it's like a good friend telling you, 'I don't want to see you anymore.' Can you imagine that? I sure can. But, I just felt like I might as well give it up. I couldn't handle all these people fighting about me having a license. Maybe I'm wrong to even try to do anything other than have people take care of me. But, somehow that doesn't suit me, and I think that's why I miss driving. I don't have many other hurts, though, because my family all loves me and we don't argue about too many things. Of course, everybody's feelings get hurt sometimes. I try very hard not to make a big deal out of it all. I lost my husband a year ago so I definitely need my friends. If they bring

I'm 69 years-old now. I've had Alzheimer's going on about ﬁve years. I don't know how much I forget or if my memory problem is getting worse. I have no way of knowing. I refuse to spend all of my time trying to remember things. In some cases I can give you answers. They might not be the right ones, but I think they're OK! I would like to have perfect words for everything, but sometimes I will and sometimes I won't. It's not always predictable. It's frustrating and I just get

up Alzheimer's, I talk about it. If they don't, I don't. I tell them, 'I keep forgetting what your name is. And I keep forgetting what street I live on.' They'll laugh at me, which is good. Maybe not for them, but it is for me. I'm funny sometimes! But I'm no more like God at dealing with all of this than anyone else you talk to.

helpful to have alternatives from which to choose. Many other drugs are also under scientiﬁc investigation. The focus of much hope for treatment lies in attempts to protect nerve cells (neurons) from the destruction and eventual death caused by AD. Studies are looking at the eﬃcacy of acetyl-l-carnitine (Alcar) in enhancing the strength of nerve cells. We are also studying a drug called Idebenone in the hope that it can stimulate growth of new nerve cells to replace those damaged by AD. Vitamin E, as well as selegiline (eldepryl), have shown promise in being able to decrease damage to nerve cells and thereby slow down some of the functional decline experienced with AD.

Update On Drug Treatments for Alzheimer's Disease By Jody Corey-Bloom, MD, PhD Over the past decade, a major approach to the treatment of Alzheimer's disease (AD) has focused on the replacement of the brain chemical, acetylcholine, that is reduced in the brain by AD. Cognex and Aricept are examples of this approach to treatment. While some people do experience improvement from these medications, others do not. Therefore, scientists are continually seeking new medicines that may have more long-lasting or significant benefits. The next medications that will likely be approved by the FDA for distribution in the next few years are ENA-713 (commonly called Exelon) and metrifonate (also known as Bilarcil). These drugs work like Cognex and Aricept by enhancing the amount of acetylcholine in the brain. Although the drugs all have similarities, the subtle differences may make one drug more beneficial or more easily tolerated (less side-effects) than another. Each person responds to medicines differently so it is

Estrogen and anti-inﬂammatories (such as ibuprofen) may also protect nerve cells from inﬂammation that can contribute to cell damage. These drugs, as well as those previously mentioned, are being investigated in centers throughout the world. Alzheimer's is a challenging disease for those experiencing it, and for those trying to treat and cure it. However, the number of important discoveries about this disease has dramatically increased in the past few years. We have every reason to believe that we will only make more progress in the very near future. Ask your local chapter of the Alzheimer's Association for information

on drugs under investigation in your area. Perhaps you can participate in a drug trial and play an invaluable role in our next discoveries!

since been set to upbeat music with a country ﬂavor. The music was composed and recorded by a professional musician residing in Dave's community.

1997 Progress Report on Alzheimer's Disease

Dave's Boogie is testimony to the realization that despite the challenges of Alzheimer's disease, one can ﬁnd a rhyme and rhythm in memory loss!

The Progress Report on Alzheimer's Disease, 1997, from the National Institute on Aging, highlights signiﬁcant research ﬁndings from the past year. The 46-page report describes research focused on brain chemistry, genetic factors, risk factors, and advances in diagnosing, treating, and preventing Alzheimer's. The report also outlines future research directions for 1998.

Source: The Marin Chapter Alzheimer's Association Newsletter February/March, 1998. Reprinted with permission from Dave Neck and the Alzheimer's Association. "The Alzheimer's Boogie" copyright 1997 Neck/Piozet.

The Alzheimer's Boogie Every Day's a Great Day

Setting Music to Memory Loss: An Alzheimer's Song is Born

Who I am is slippin' away. Still every day's a great day. I swallow my pride and do the best I can, But who I am is slipping away. I don't drive no more, But I can walk for sureGetting 'round with my dog, Trixie-girl Walking to town with my pal, Trixie-girl. Now and then I forget to shave, My shirt won't go on straight, but I don't sing the blues. Since I don't read much, I don't get much bad news. Who I am is slippin' away. Still every day's a great day. I swallow my pride

For many people, it is difficult to find words to describe the experience of Alzheimer's disease. But Dave Neck, a retired military officer who is diagnosed with AD, took this challenge one step further! Dave has been a member of the Alzheimer's Association's Early Stage Support Group in Marin County, California, since it began in 1994. Dave initiated the idea of an Alzheimer's song, and brought the concept to his support group where he received enthusiastic encouragement about the idea. He then wrote the lyrics to "The Alzheimer's Boogie." The Boogie has

and do the best I can, But who I am is slipping away. Alzheimer's is such a funny word, I just call it "The Disease." But it don't scare me. No, not at all. I'll never give up, I'll keep standing tall. Can't always find the words, Sometimes they just won't come, But these three keep on shining throughSome way I still can find, "I love You." Who I am is slippin' away. Still every day's a Great day. I'll swallow my pride And do the best I can, But who I am is slippin away. Who I am is slippin' away... Still every day is a mighty fine day.

Organization), a form of health care insurance in the United States. "A degree of denial is essential. Like somebody drinking hot coﬀee, we sip the truth of our condition carefully and gently."

You can not always tell what is happening, especially if you are in the early stages of Alzheimer's disease, because it mimics the mild memory loss that can accompany your own normal aging process. Unless you see a doctor who is alert to the possibility of Alzheimer's or are in an HMO that is willing to do the procedures to rule out Alzheimer's, you can not be sure. You should not ignore any change in memory, since Alzheimer's is not a "one size ﬁts all" disease. It varies in intensity and in the manifestation of its symptoms. The eﬀect can be swift or slow, intense or mild. Consequently, it is vitally important to get medical advice as quickly as possible.

Volume 3, Number 4: May - July, 1998 Ideas About Alzheimer's By James W. Anthony Editor's note: Diagnosed over three years ago, James Anthony has been an extraordinary advocate for people with Alzheimer's disease. Through his writings and pubic appearances, he helps others understand the many facets of living with this disease. We are grateful to the Eastern Massachusetts Chapter of the Alzheimer's Association for permission to reprint Jim's article from the "Ask Dr. Know" column of their Summer/Fall 1997 chapter newsletter. For our international readers: James refers to an "HMO" (Health Maintenance

I came to my diagnosis rather circuitously. A few years back I was working as a case manager in a mental

health facility. My supervisor began to complain that I was failing to do my work. I was the only person in my job category and had no peers with whom I could compare notes. I was not aware that I was having difficulties, but my difficulties were made plain to me when my supervisor, in a very abrasive way, pointed out my lapses. It is very difficult for a person with Alzheimer's to experience his disease. You can not experience what you have forgotten.

Finally, I changed my health care provider. My new physician was much more interested in my forgetfulness. After more tests, scans, and examinations that I can remember, I learned that I had Alzheimer's. My mother had also been diagnosed with Alzheimer's and had lived for many years with it. I ﬁrst noticed something was wrong when she kept reading the same book over and over again. She eventually entered what was called a personal care home. My brother and I visited her as often as we could. One day she asked, "Where's Mickey?" We explained that Mickey, our oldest brother, had died two years earlier. Then she said, "You must think I'm crazy not to know that my own son is dead, but let me tell you, there are some things in life that are better forgotten." In her confusion, she had developed an acceptance of life and its challenges, and a wisdom that transcended her limitations.

It was a difficult time for me. I, who had always gotten high marks for my work, had to face poor evaluations. I went to see a physician in my HMO. After a cursory examination, he told me that nothing was wrong with me, that my forgetfulness was normal -- appropriate for my age. I was 57. Of course I was happy to hear that diagnosis, but the criticism and the low evaluations continued until I finally resigned, as my supervisor suggested. I found another job in the same field and received high marks again. I was reassured, but a small voice seemed to warn me not to settle in too comfortably. My case load increased. After I had been there a little over a year I began to have trouble doing my work. Six months later, I resigned. It was the end of my working days. Admittedly, I had no diagnosis at the time, but one notable dynamic I observed is that people can become very angry with people with Alzheimer's. My supervisors in my last two jobs were very angry with me.

One of my oldest friends has Alzheimer's, as well. It is diﬃcult for him to talk coherently. Not long ago, I joined him and his wife for a concert of the music of Brahms and Schubert. Though he could not tell us what he was feeling, he gave every evidence of enjoying himself. This man, in his own way, is in touch with his environment, and his ingrained habits of courtesy carry him through.

One of the quips that people use when they forget something is, "There goes my Alzheimer's." If their Alzheimer's were going, I doubt that they would be so chipper about it. But remarkably, a number of us with Alzheimer's are chipper. I'm not sure why. My guess is that having gotten the heavy news, we decide we will make the most of being with friends and family, and of doing things we love to do. It is a prescription that people without Alzheimer's might try.

disease, I do it for myself. I do want to spread the word about Alzheimer's, but I do think about the course of my disease very much. I do know that a time will come when I won't be able to write or give talks. So I'm going to talk as long as I can.

MAILBOX Dear Editor, I co-facilitate an Early Stage Support Group in Thunder Bay, Ontario, Canada. The group members have been avid readers of your newsletter for several years. In the May-July 1996 issue our group members' "Words of Advice" was published. The group was ecstatic about this and went on to publish their list of advice in the form of a bookmark which we provided to local bookstores for public distribution during Alzheimer's Awareness Month. Recently our current group members wrote a letter to our local physicians regarding their experiences when undergoing assessment. This letter evolved out of our group discussions about their experiences and feelings before they had any idea of what was happening to them. Some of our group members had very frustrating experiences. This was an opportunity to share their thoughts with physicians and remind them of the person behind the symptoms. The group wanted to share this letter with your readers, as it may inspire others to speak up about their

I do not mean to suggest that people with Alzheimer's do not take the measure of our prospects. Alzheimer's is a fatal disease and it eventually robs us of our sentences. But a degree of denial is essential. Like somebody drinking hot coﬀee, we sip the truth of our condition carefully and gently. We could, of course, rail at the universe, at God, at the physician who diagnosed us. It is a temptation, and all of us in my Alzheimer's support group have done a bit of that. We carry our quirks and eccentricities, strengths and weaknesses with us into the disease. Yet, our group is remarkable for its spirit of empathy, compassion, and truth-telling. People with Alzheimer's have gifts to give. Do not underestimate their strengths and wisdom. We do not survive with Alzheimer's without learning a thing or two. And I realize that when I tell people what it's like to have Alzheimer's

experiences and raise awareness in the medical community. We look forward to all your upcoming newsletters! Sincerely, Tracy Puurunen Family Support Coordinator Thunder Bay, Ontario, Canada

Your doctor may also recommend that you attend a specialized social program for people with Alzheimer's. This is because many doctors believe that maintaining activity and keeping your mind stimulated is a very important prescription for AD. Also, physical exercise, while not a cure for AD, is helpful for maintaining a healthy body.

Editors note: This excellent letter is reprinted on page 7. We thank the Thunder Bay group for this very worthwhile contribution!

Make sure you receive treatment for any other medical conditions: Other health care problems can exacerbate the symptoms of AD. These problems include urinary tract infections or any kind of inﬂammation, thyroid disturbance, vitamin deﬁciencies, and viruses. Make sure to consult your doctor regarding all health care problems.

A Visit to the Doctor People often tell us about having received a diagnosis of Alzheimer's disease (AD) with no discussion about the medical assistance that may be available to treat symptoms of the disease. While there is no cure for AD, there are ways that a capable and conscientious physician can assist patients and families. Here are some ways to make the most of your medical care:

Doctors can help with some changes in mood or behavior Doctors can treat many of the symptoms of AD including depression, irritability, agitation, or sleeplessness. Often these symptoms respond to medicines which can help you cope more eﬀectively with the disease. Sometimes others are more aware of changes in our moods or behaviors than we are. Try to trust a loved one when they suggest you seek help for these concerns.

Ask about current treatments for AD Some medicines may help you maintain higher levels of functioning for longer periods of time. If you have not been prescribed any medicine for AD, ask your doctor about the possible beneﬁts of Aricept, Cognex, or Vitamin E. There are also many diﬀerent drug studies currently underway across the country (and around the world), and you may be eligible to participate.

Preparing for your visit • Make sure someone accompanies you to your doctor appointment. Memory problems challenge the

ability to accurately remember the details of our medical problems. • Take a specific list of questions or concerns to your visit. We have all experienced the 5-minute office visit syndrome. If we come well-organized and prepared, we make better use of the limited time. • Keep a list of all your current medications and supplements. Present it to your doctor at each visit. This assures your doctor is updated on your medicines and can evaluate any possible side effects.

discussed some of their experiences when being assessed for possible Alzheimer’s disease. For most individuals this was a very stressful and traumatic experience, not only because they feared the worst, but also because they were not taken seriously or treated sensitively by their physician. All participants in this group agree that doctors are very busy, but would like them to understand some of their feelings when they are being assessed: ● Listen when I tell you what is happening to me ● Be more sensitive when explaining the disease an avoid hurtful remarks ● Losing my driver’s license is very traumatic一be understanding. ● Don’t treat elderly people as if they are stupid. We are doing the best that we can. ● Allow me time to explain my problems.

Let your doctor know your thoughts, concerns, and feelings Sometimes a physician becomes so focused on our physical health care needs that you may feel your emotional needs are ignored. This can feel very impersonal or insensitive. Recently the Early Stage Support Group participants of Thunder Bay in Ontario, Canada, took the initiative to make their local physicians more aware of their feelings. With the assistance of their support group facilitators, they sent the following letter out to community physicians to sensitize them to their concerns:

Sharing these thoughts and feelings was a positive way to resolve the feelings of resentment and inadequacy that some participants felt when reﬂecting upon their experiences. It is hoped that these suggestions will act as a reminder of the needs of the persons being assessed for possible Alzheimer disease.

To: Physicians From: Early Stage Support Group Participants Re: Suggestions to Physicians

This letter is an important reminder of the eﬀective advocacy that can occur when diagnosed individuals make their feelings known to those providing for their care. We commend these support group members and their facilitators,

The participants of the Alzheimer’s Society Early Stage Support Group

Tracy Puurunen and Evelyn Harris, for increasing physician awareness in their community. Sometimes our concerns are beyond the speciﬁc training of a medical physician. Diagnosed individuals and families also need emotional support, education on coping and managing with the disease, and counsel on many diﬀerent dimensions of planning and living. If your physician does not meet all of your needs, ask to speak with a nurse or social worker who may be better able to address these concerns. Be a good consumer and try to get the assistance you deserve!

around. I think I know where I put it but I'm convinced somebody else moved it!" ---Bob "I'll look for something and it's right there, but I don't see it. But I'm persistent and then I find it." ---Irene "I get so frustrated, but I try to calm down and take a break from it for awhile. When I've calmed down, I can find it easier." ---Glenda "If I can't find something, I just go off and do something else instead. It's a nuisance, but I'll probably find it eventually, so why worry about it?" ---Phil

BRAINSTORMING We asked people diagnosed with Alzheimer's disease: What do you do when you can't ﬁnd something? Here are some of the answers:

I Can't Remember Author unknown Just a note to say I'm living, That I'm not among the dead, Though I'm getting more forgetful, And all mixed up in my head. I got used to my arthritis, To my dentures, I'm resigned. I can manage my bifocals, But dear God, I miss my mind. For sometimes I can't remember When I stand at the foot of the stairs, If I must go up for something, Or have I just come down from there? And before the fridge so often, My poor mind is ﬁlled with doubt. Have I just put some food away, or Have I come to take some out? And there's a time, when it is dark,

"My wife ﬁnds everything. I ask her, and it works!" ---Bill "When I lose something, I go to ﬁnd it, but then I forget what I'm looking for!" ---Norm "I swear, and then I think about it some more. Sometimes I shed a tear and ask, "Dear God, help me." ---Lillie "I always forget where things are. It's just a lifestyle now." ---Ron "You wouldn't want to hear how I respond! There's usually no one else

I stop and hold my head. I don't know if I'm retiring, Or am I getting out of bed? So, if it is my turn to write you, There's no need getting sore, I may think that I have written, And don't want to be a bore. So remember that I love you, And wish that you were near. But now it's nearly mail time, So I must say "Good-bye dear." Here I stand beside the mailbox, With a face so very red. Instead of mailing you my letter, I went and opened it instead.

maintaining memory. However, none of these drugs cure Alzheimer's disease. Many people who are already on Aricept will wonder if they should switch to Exelon when it becomes available. Research does not indicate any significant differences between the effectiveness of Exelon over Aricept, and the side effects of both drugs are quite similar. If you are on Aricept and tolerating it well, there may be no justification for switching to Exelon. But each person is unique. Consult with your doctor for further information concerning any benefits or complications of these drugs.

Questions and Answers

Q. My driver's license was revoked because of my Alzheimer's disease. Is there any way I can get it back? A. We frequently hear this question raised by individuals who are having a great deal of difficulty accepting the loss of driving privileges. In the United States, one must usually pass both a written and driving test in order for a driver's license to be renewed. Alzheimer's disease can affect driving in many different ways, thus making it very difficult for diagnosed individuals to effectively pass their tests. Symptoms of memory loss, disorientation, and changes in vision and perception may result in drivers getting lost, misjudging distances, forgetting rules of the road, or having slowed reaction times when making the multiple quick decisions needed to drive safely on freeways or around town. Concentration may be

Q. I've heard there is a new drug for Alzheimer's coming out on the market soon. Is it true? A. In the United States, the next drug that will be available for treatment of Alzheimer's disease is called Exelon. It has received FDA (Food and Drug Administration) approval and will probably be on the market by Fall. Originally tested under the name ENA 713, Exelon acts in a manner similar to Cognex and Aricept. These three drugs all help to limit the breakdown of an important neuro-transmitter in the brain called acetylcholine. This neurotransmitter is required for memory and its levels are reduced in the brains of people with Alzheimer's disease. Thus, these three drugs all work to maintain higher levels of this neurotransmitter in order to assist with

affected as well as coordination. Some memory-impaired people find they are more easily frustrated in stressful situations. This can affect driving performances and safety.

are not likely to improve to the point where driving can once again become a safe endeavor. Some people attempt to appeal the revocation of their driving privileges and may want a second chance at passing tests. But this is not advised. If your driver's license has been revoked, it is wise to try and accept the decision and stop driving before causing injury to yourself or others.

Unfortunately, Alzheimer's disease is a progressive disease. Although medications can help improve some functioning, the symptoms that can cause signiﬁcant problems with driving

VOLUME 4

Volume 4, Number 1: August - October, 1998 We Require Your Understanding by Phillip Alderton The Young People in Your Life: Alzheimer's Resources for Children and Adolescents Sea of Unremembering by Carol LaBarge Computer Resources: Chat Rooms , Web Sites, and Alzheimer's in the Modern World Alzheimer's Association's "Safe Return" Program Volume 4, Number 2: November-January, 1999 In Honor of Those Who Care My World is a Better Place... Holiday Hints "Memories in the Making" Art and Alzheimer's A Message of Love by Tim Brennan Volume 4, Number 3: February-April, 1999 What it's Like to Live with Alzheimer's by Sheila Sometimes I Forget by Natasha Josefowitz

The "Work Buddies" Program Early Alzheimer's: An International Newsletter on Dementia 1998 Progress Report on Alzheimer's Disease Volume 4, Number 4: May-July, 1999 Living On My Own with Alzheimer's by Carole LaBarge New Book: Speaking Our Minds - Personal Reflections from Individuals with Alzheimer's Companionship: A Critical Component to Living with Alzheimer's

Volume 4, Number 1: August - October, 1998

My knowledge has advanced a little more, but I still have so much more to learn. Unfortunately, I forget many of the things I do learn. It's fun reading the same article many times, and some points do stick in the mind, though not for long.

We Require Your Understanding By Phillip Alderton Editor's note: In October, 1996, Phillip Alderton was diagnosed with Alzheimer's disease. Phillip is in his early 60's and lives in South Australia. He is a founding member of the ﬁrst early stage support group through the Alzheimer's Association in Adelaide, South Australia. In 1997, he was the keynote speaker at the National Alzheimer's Association Conference held in Adelaide. Some of his comments are reprinted with permission from him and the Alzheimer's Association, South Australia Newsletter, July/August, 1997. Phillip Alderton

Concentration becomes difficult. In the past I could work on several projects in a day. Now I have to work on one project at a time and often even have trouble coping with that. The mind wanders in various directions and bringing it back into focus on the main subject is always difficult. Tiredness and headaches are constant companions. Learning to cope with these new difficulties is always a challenge. I do not view any of this as a problem, but as a new challenge. Goals are reached not only by careful planning, but also by the modification of plans and changes on the run, and by trial and several errors. Everything needs to be written down, or done immediately. The plans made this week may well need modification in a few weeks' time to allow the same task to be performed.

It may surprise you to know that I was very relieved when told of my diagnosis. My knowledge of Alzheimer's disease was nil, but at least I now had a reason for my forgetfulness. I am now learning as much as I can about it. I do not see it as a problem, but view it as a challenge. I will ﬁght it every inch of the way.

People with Alzheimer's disease may not have very good recall, but we can certainly project our minds forward into the future. What do we see? What do we require? We see education, both to us and to members of the general public, as a beneficial factor. Ignorance of Alzheimer's disease by the general populace sometimes causes abject misery, loss of self-esteem and confidence, and eventually, isolation. We require your understanding. Our minds and bodies work slower. Our responses may not be to the questions you asked. Have patience; try a different approach. We have not lost our sense of humor. Laugh with us, but not at us. We can still see the funny side of situations.

Editor's note: As a means of acquiring information and support, Phillip participated in a six- week educational support group for people diagnosed with Alzheimer's disease and their family members called the "Memory Discussion Group." Facilitated by Anna Goossens of the South Australia Alzheimer's Association, Phillip felt the group was a very positive experience and one that should be available to all diagnosed individuals and their families: We were a mixed group that met on the ﬁrst get-together of Alzheimer's disease suﬀerers. We varied in age, work backgrounds, gender, and period since being diagnosed. However, the single factor that bound us together was the fact that in some way we all had a memory loss problem. Discussion of the problem between ourselves was without embarrassment. Many interesting, and on some occasions, very personal questions were asked and answered. We commenced our discussion with looking at the early symptoms of Alzheimer's disease, the process of assessment and diagnosis, and our feelings about it. In the next week, we went on to discuss adapting to the changes in life which may occur as a result of memory loss; practical strategies for managing day-to-day activities; focusing on the positive and enjoying current interests and activities; planning for the future with a special emphasis on practical considerations and emotional preparation. In the last

We require information and updates on accommodations suitable for us to reside in when the time comes, when we become a danger to ourselves, or when our carers can no longer cope with our antics. We require information on the latest drug experiments and later on their outcomes. Most of all, we require your patience and understanding.

week, we looked at stress management and relaxation. We concluded with an evaluation and forward planning which I am pleased to say, have taken place very successfully.

children or your grandchildren who may be aﬀected by your illness. Two resources can help address the concerns of young people so that they too, can be patient and understanding with your condition: Fading Memories: An Adolescent's Guide to Alzheimer's Disease and Through Tara's Eyes - Helping Children Cope with Alzheimer's Disease are booklets written speciﬁcally to a young audience.

I feel that classes such as this help to educate and improve our understanding of Alzheimer's disease. Areas that do not have classes should certainly think of introducing them. They are very beneﬁcial and can be run at a very reasonable cost. These six sessions left me with a better understanding of Alzheimer's disease and helped me accept my own limitations. I will meet each challenge as it comes along and will continue to ﬁght this insidious disease in every way possible -- to overcome it for as long as I possibly can.

The Young People in Your Life: Alzheimer's Resources for Children and Adolescents

MAILBOX Dear Editor, Thank you so much for continuing to provide a quality newsletter for those in the early stages of Alzheimer's. My support group, the DRC club (a group for women with mild memory loss), regularly shares the articles and information in Perspectives during our support group discussions. Regards, Marilyn Trabert Walnut Creek, California

Phillip Alderton makes an eloquent plea for family members to be patient and understanding as they adjust to the changes in their loved one with Alzheimer's disease. Certainly knowledge and awareness help many of us cope with challenges in a more eﬀective and compassionate manner. While there is a great deal of valuable literature available to adult family members who may want to learn about Alzheimer's disease, there are also important resources for the young people in your life--your adolescent

Editor's note: We received the following letter last fall from Linda Raymer, diagnosed with Alzheimer's disease. Now, as this

summer is coming to a close, perhaps others have experiences they would like to share with readers concerning recent travels and coping with Alzheimer's.

Dear Editor, I was diagnosed with Alzheimer's disease in December of 1997. I would like to share with you a poem I wrote. I am so glad I was able to get it written as I would not be able to do it now. I can't believe the changes in me in just less than two months.

Dear Editor, My husband and I recently went on a car trip. We drove ﬁve hours to Mackinaw City. This was no problem for me and when we arrived, we took our time and it was enjoyable. The next day we took the boat to Mackinaw Island. I became agitated and tense on the boat. The crowds on the island made it worse, and I also lost my sense of direction. We took a buggy tour away from town and I felt better. We also drove to Sault St. Marie, Canada to see the fall colors. Once again, the crowds and the three hour train ride each way were too much. What I learned from the experience was that I don't do well with organized tours and have to avoid crowds. I suppose if we plan anything in the future it will be at our own pace.

Sincerely, Carol LaBarge La Mesa, California Editor's note: We printed Carol's poem. We can never be certain the rate at which Alzheimer's disease will progress. Some people are hit particularly hard in certain regions of language or expression early on in the course of Alzheimer's, but may preserve other capacities well into the disease progression. Sometimes progression varies, with periods of decline followed by periods of stability. What is important is to utilize all one's abilities for as long as possible and capitalize on one's strengths throughout the course of the disease.

I am hanging in there and thinking positive and learning as I go. It makes me feel good when I am able to help others and let them know they're not alone.

Sea of Unremembering By Carol LaBarge I cast the net, It floats briefly in the breeze, Lands and submerges, searching for the word, The one precious word I need. Words, syllables, phrases, Float, rush, shimmer and fly, Sparkling, dashing, laughing, Mocking me as they pass by

Sincerely yours, Linda Raymer Clinton Township, Michigan

To the sea of unremembering. Memories dance and glisten in the light, Teasing, elusive, like a butterfly in flight. I breathe deeply, gulping long draughts of air, And dive deep, deep in the dark, dark inevitable snare, The sea of unremembering. Like the pain of missing loved ones, Ever present and keen, So is my loss, The sea of unremembering. The knowledge and skills of a lifetime are vanishing like a mist, And so far all that medical technology can offer, is a sea of helplessness. With the passing of time, As I'm rocked to and fro, And there's less and less of me to know, My God shall supply all my need, Until at last I'm freed From the sea of unremembering.

For general information, research updates, and support networks: The National Alzheimer's Association http://www.alz.org Alzheimer's Disease Education and Referral Center (ADEAR) http://www.alzheimers.org/adear Alzheimer's Disease International http://www.alz.co.uk

Alzheimer's Association's "Safe Return" Program Editor's note: We featured an article on Safe Return in our ﬁrst issue of Perspectives published three years ago. To date, the Safe Return Program has helped to locate and return to their families nearly 3,000 registrants. We think this program is so valuable that the information bears reprinting in this issue. "Recently I was driving in a familiar area but I had gone farther than I usually go. There were buildings on either side but nothing seemed to be open. So I went back and forth and back and forth. I was afraid to move more because then I really wouldn't know where I was. It was like a nightmare. I ﬁnally saw a door on somebody's building that was half-way open so I asked for directions. Then I was OK when I knew what to do next. But the fear is that I'm lost forever. I think it's a fear of being stranded. --Jean

Computer Resources: Chat Rooms , Web Sites, and Alzheimer's in the Modern World The computer age is rapidly upon us. While the inundation of information can be overwhelming, the variety of resources can also provide links to knowledge and connections between people worldwide. For those diagnosed with Alzheimer's who can utilize a computer, these resources may be useful:

Many individuals with memory loss have a frightening story to tell about a time when they were lost and thought that they would be unable to ﬁnd their way home. This may happen while driving busy streets, walking in the neighborhood, traveling, or simply going out to do an errand. The fear and stress of these moments compound the memory loss, making concentration diﬃcult. Under these circumstances, it is not uncommon to be disoriented and to forget one's address or phone number.

impairment, especially in an emergency. The Safe Return bracelet is discreet while also providing access to important information if necessary. Ultimately this can serve to give one a greater sense of independence and security. Recently a woman, newly diagnosed with Alzheimer's disease, gave her own plug for the Safe Return program: Since I got my Alzheimer's bracelet I feel so secure. I can tackle anything!--Liz Another man describes the relief both he and his wife experience with his registration in Safe Return:

Because nearly 60% of those with Alzheimer's disease may become lost sometime during the course of the disease, the Alzheimer's Association in the U.S has developed a program called "Safe Return." This nationwide program enables police, community agencies, and private citizens to identify someone with memory loss and help them return to home. The program provides registrants with: ● An identification bracelet or necklace ● Wallet identification cards ● A 24 hour toll-free number to be called when a person is lost or found ● A national database of 17,000 local law enforcement agencies to help find a missing individual. Some people with Alzheimer's disease are reluctant to wear the Safe Return bracelet for fear of stigma or of being "labeled." However, many others have reported feeling that it is advantageous for others to know of their memory

"I joined Safe Return because I like to take long walks and my wife was always worrying that I might get lost. Now that I wear the bracelet with my ID, we both have peace of mind. It also gives me more conﬁdence when I travel.--Bill To enroll in or to receive more information about the Safe Return program, contact your local chapter of the Alzheimer's Association or the National Alzheimer's Association headquarters.

Drug Update Last issue we printed an update that the new drug, Exelon, had been approved by the FDA (Food and Drug Administration) and would soon be available to people with Alzheimer's disease. Unfortunately, we erred in our information. Exelon has been approved in Europe, but due to some concerns

with the data from drug studies conducted in the USA, the FDA has postponed its approval of the drug. It is unlikely that we will see Exelon on the market until next year. We regret the misinformation and will try to keep readers accurately posted concerning any updates.

conclusive diagnosis of Alzheimer's disease (AD). Rather, a diagnosis of AD is made by ruling out the over 70 other possible causes for memory loss and confusion. If doctors can not determine any other cause of the symptoms, then AD becomes the likely diagnosis. There are, however, a number of tests that help physicians feel more conﬁdent about the diagnosis. You should have had the following tests when you were evaluated for memory loss and determined to have AD: • A brain scan such as a CT or MRI • Blood work to rule out infections or other diseases • Neuropsychological testing to evaluate your memory and other thinking abilities • Evaluation for depression as mood changes can also cause memory loss. • Evaluation of family history, because in some instances, this can elevate one's risk for AD. A diagnosis of AD can only be conﬁrmed with certainty at autopsy. But with a complete work-up, physicians have achieved about 90% accuracy in diagnosing the disease during life.

Ginkgo Biloba continues to receive a lot of press and interest from individuals looking for a memory-enhancing medicine. There is still no consistent evidence that ginkgo biloba can aid the memory abilities of people with Alzheimer's disease; however, further research is underway. The National Institute on Aging (NIA) and the Office of Alternative Medicine, both at the National Institutes of Health, are funding a small study to test the effectiveness of ginkgo biloba in treating memory problems in Alzheimer's disease. The 2-year study, which began in 1997, is being conducted at the Oregon Health Sciences University in Portland. It will include 42 patients with mild to moderate Alzheimer's disease. For a complete fact sheet on ginkgo biloba, find the full sheet on their website at http://www.alzheimers.org.

Volume 4, Number 2: November-January, 1999

Question and Answer Q. How do they really know that I have Alzheimer's disease? A. We frequently hear this question from diagnosed individuals because there is no one test that can establish a

In Honor of Those Who Care When we read about or hear references to Alzheimer's disease, we often come across the word "caregiver." In its most

literal deﬁnition, this word describes a person who gives care to another. Perhaps what is less easy to deﬁne in simple terms is the word "care." This small word can be an action, a feeling, a concept. In any form, it becomes an essential piece of vocabulary in the complex language of Alzheimer's.

variability of our first associations with the word, we can find areas of helpful common ground where all of us are both givers and receivers of care. Alzheimer's disease is an illness that affects areas of both physical and cognitive (mental) ability. While we all need to try and maintain our abilities as long as possible, it is wise (and often much less frustrating) to accept assistance when we are stumped in a certain task. In these times, another person may give care by extending a helping hand in the complexities of managing personal finances, household repairs, driving, dressing, grooming, or food preparation (making a meal, or cutting up food). You may be able to think of other ways in which a loved one renders care to help you out in a time of need or eliminate a stressor from your life.

All of us are both givers and receivers of care. The word "caregiver" elicits many different responses from people with Alzheimer's. Some individuals have positive associations and feel a sense of security or reassurance in the thought of someone being present to provide assistance or support as needed. Others respond to the word more defensively, equating a caregiver with a babysitter or nurse. Some are quite accepting that the challenges and changes accompanying Alzheimer's disease will result in the need for increased personal assistance or more consistent companionship. Others may feel somewhat insulted at the thought of needing help or infantilized by the notion of someone "supervising" them. These responses are further complicated by the varying levels of denial, insight, or acceptance each person with Alzheimer's has into the effects of the disease on his or her emotional or physical well-being and overall abilities. But perhaps if we look more closely at the role of a caregiver in the condition of Alzheimer's disease, we may find that regardless of the

Caregiving is not just physical assistance. We also beneﬁt from emotional support during stressful

times. The care extended to us may come in the form of reassurance, shared humor, encouragement, or solace. These experiences are the moments that connect us more closely to one another and remind us of our common human needs. We may not always require someone to take full care of us, but we always need someone to care about us. This is a "caregiver" in the truest sense. If we understand this deﬁnition, we can recognize that a person with Alzheimer's, while being the recipient of care, can also be a giver of care. Certainly in support groups for people with Alzheimer's, each member is a potential caregiver to another by extending a kind word, listening with concern, or welcoming another into friendship.

worry, and provide him or her with some relief. Last Thanksgiving, the support group members of the UCSD Alzheimer's Disease Research Center decided they wanted to express their gratitude to the caregivers who help them through the day-to-day challenges of living with Alzheimer's -- those who help to make their worlds a better place. Each participant contributed a line towards the creation of a poem. The lines were then compiled into a collective message to be given by group members to the special person(s) in their lives. The support group members share their message with Perspectives readers in honor of those who care and in celebration of this Thanksgiving season. By extending their appreciation for their caregivers, these group members become caregivers in return.

And at home, how do you show you care for the one(s) who cares for you? Perhaps you offer a warm smile, a hug, or a "thank you" that expresses your appreciation. Maybe you offer to help with tasks in whatever way you are able. Or, very importantly, you may extend care by doing something for someone that you would rather not do, such as allowing your caregiver to do the driving; attending a specialized social center; consenting to company, even when you think you're fine left alone. Just as the one who cares for you makes sacrifices, sometimes you too must make sacrifices by doing something that will ease that person's

My World is a Better Place... ...because you're always there by my side when I need you.

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Recent exciting findings suggest that this long-held assumption is probably, incorrect. There is now evidence that the brain can indeed generate new nerve cells. A Salk Institute neuroscientist, Fred Gage, examined at autopsy the brains of five cancer patients who had been given a substance during life to monitor their tumors. Dr. Gage knew that this substance also attached to, and thereby identified, new developing cells. On autopsy, Dr. Gage examined the brains of these cancer patients and found evidence that new cells had been forming in the hippocampus, the region of the brain involved in learning and memory.

...because we've shared special memories together. ...because of all the things you do for me: find things when I lose them, drive me where I need to go, cook for me. ...because you really know me... what I need and what I like. ...because you put up with me when I'm feeling grumpy or crotchety, or when I'm wrong about something. ...because you give me a hug and a kiss when I need them. ...because it's comfortable to be together, even without talking. ...because of your unselfishness and the sacrifices you make for me. My world is a better place because of you.

Scientists caution that it is not yet clear whether these new nerve cells were functioning like normal neurons. But this encouraging ﬁnding marks an important milestone in our understanding of nerve cells, and could lead to further research into the ways nerve cells might regenerate to treat the losses caused by Alzheimer's and other brain injuries.

Research Update Neurons in the News Alzheimer's is a disease that destroys nerve cells (neurons) in the brain. Nerve cells are essential to the functioning of memory, language, and all other areas of cognition (thinking). Most scientists have long assumed that while other parts of the body can generate new cells, the brain cannot. In eﬀect, we are born with a certain supply of nerve cells and once that supply is diminished by stroke, head injury, or a disease like Alzheimer's, there is no hope for generating new cells. Consequently, we are faced with an irreversible loss.

MAILBOX Dear Editor, I enjoyed reading James W. Anthony's article in the last Perspectives newsletter. Having early-stage Alzheimer's, I can identify with his experiences. I congratulate him for his courage and his work to promote awareness of the disease. We learn more about Alzheimer's disease

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(AD) and how to cope from our support group members, both victims and caregivers alike. I am grateful for the Perspectives newsletter, as well. It provides a much needed opportunity to share our experiences and learn to cope with the disease.

Dear Readers, As this issue goes to press, we enter into our fourth year of publishing Perspectives. We wish to thank all of our readers for your continued interest and support over these years, and we look forward to continuing our eﬀorts to provide one of the few written resources directed speciﬁcally to the person with Alzheimer's.

I know AD impairs one's memory. Lately I think it is more of a remembering problem than forgetting. Everyone forgets. You may forget to pick up the dry cleaning and later recall that you forgot. But never having a memory of it is different. If I don't know what day it is, looking at a calendar won't help because I don't know what I'm looking for. I set an alarm clock to remind me to take my medication. When it rings, sometimes I turn it off, but don't take the medicine. Other times I don't reset the alarm to take the medicine the next time. I know this can be of great concern for both the person with Alzheimer's and the caregiver. How-ever, when I discover that there are others just like me in my support group, we find humor in it at times.

One of the highlights of publishing this newsletter is the correspondence we receive from our readers. Your contributions in the way of articles, letters, poems, and general inquiries help to create the network so essential to those living with Alzheimer's disease and related disorders. We hope we can continue to create a forum where your voices can be heard, and your questions and concerns addressed in a thoughtful manner. Please let us continue to hear from you. We also welcome your suggestions about topics you would like us to address in the newsletter. As this year comes to a close and we usher in a new one, we extend to you all our heartfelt wishes for a peaceful and satisfying holiday season. Warmly, Lisa Snyder and Robyn Yale

As Mr. Anthony mentioned, "A number of us are chipper." I remember someone once saying, "It's OK to lose your train of thought, but just don't lose the passengers." Sincerely,

BRAINSTORMING We asked support group participants: Why are support groups important for people with Alzheimer's disease? Here are some of the answers:

Linda Raymer Clinton Township, Michigan

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"You've got to have a good teacher (group facilitator). The learning is important." ---Lance

"It's my salvation to be able to go to a place and be around others in the same predicament. We can get out of the predicament for awhile by being with a group of friends."---Jack

"I don't feel so alone." --- Barbara "So you have people you can go to who understand you and know how you feel. There isn't a whole lot of explaining to do with this group." ---Marie

"Communication. It brings people together. I like to have people to talk to." ---Jim

If you do not have a support group in your area, call your local chapter of the Alzheimer's Association and ask that one be started!

Holiday Hints All around the world, the end of the year marks the season for a variety of religious and cultural holidays. Travel is common, as are large gatherings of friends or family. These can be joyful times, but they can also put increased demands on our memory, concentration, and energy. A few random tips come to mind: ● When traveling, remember that new places can be disorienting. Bring a night light with you to place in the bathroom in case you need to ﬁnd it in the dark. ● Enroll in the Alzheimer's Association "Safe Return" program which will help reunite you with family should you become lost in a holiday crowd or in unfamiliar surroundings. ● If you will be having reunions with less familiar friends or extended

"You get some good ideas here."---Dan "The most important thing is to be able to be with people who have the same problems and then if you want to say something, you can feel comfortable. We're all in the same boat." ---Bernice "When you start out, you think you're the only one affected and then in these groups, you find out there are others in the same situation. You come to a point where you aren't afraid of it although you'd like to get out of it. We're all unique here with this Alzheimer's. It affects each person a little differently." ---Tom

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family members, review pictures or memories of these people to reacquaint yourself with them before the gathering. ● Avoid the consumption of alcohol. It may exacerbate memory problems and lead to increased confusion. ● If you want to send out holiday cards, but struggle with writing, consider dictating a general message to your caregiver which can then be xeroxed and included in each card. ● Celebrate and enjoy the festivities, but also make room for quiet time to restore energy and reduce confusion.

Gaining the conﬁdence of the person with Alzheimer's is vital to the "Memories" method. The program takes the focus oﬀ of representational picture making and places it on less restrictive creative expression. This approach assists in diminishing the fear of failure and the "I can't draw" belief held by many. An important goal of the program is to help participants feel at ease with non-verbal expression in a non-judgmental environment.

"Memories in the Making" Art and Alzheimer's "Memories in the Making" is an art program specially designed for people with Alzheimer's disease. The program originated in the Orange County, California, Alzheimer's Association and has expanded to San Diego and Denver, Colorado. Using various art media, including watercolors and pastels, individuals with Alzheimer's are encouraged to communicate their thoughts and feelings, reminisce, and enjoy the creative process. Experienced artists work weekly with groups or individuals in various community settings. They facilitate the classes using techniques that foster self-esteem and creative communication without the same need for ongoing memory or verbal communication skills that is required in conversation.

Another goal of the "Memories in the Making" program is to increase public awareness about the many diﬀerent kinds of messages that can be conveyed by people with Alzheimer's disease. Drawings and paintings range from ﬁgurative, to landscape, to abstract, and illustrate the wealth of ideas and inspirations that can live on in one's mind even in the face of such a challenging and disruptive disease. Facilitators of the program have made a point of sharing the works of their participants through public showings and the annual "Memories in the

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Making" calendar. These projects showcase the artwork, and are lovely and often lively displays of creativity that can also help to raise money for Alzheimer's-related research and services.

Alzheimer's. Jim has diﬃculty walking. He tires quickly. Jim also displays some Parkinson's disease symptoms. He doesn't say much, usually preferring to answer "yes" or "no" to questions asked. Jim's daughters tell me their dad likes to hear me speak. He smiles frequently when I talk. We shake hands after a meeting. We may hug. Jim shows us his love. I continue to learn, even from those who can no longer adequately express themselves out loud.

A Message of Love By Tim Brennan Editor's note: Tim is diagnosed with Alzheimer's. He has written numerous articles about various aspects of living with the disease, and has shared some of these pieces in Perspectives. Although he no longer gives the public talks he refers to in his article, he continues to share his wisdom and writings in very meaningful ways. This article was written a year ago, but its message is enduring.

Someday those who care for a person with Alzheimer's may be faced with what appears to be an unsolvable problem. Caregivers may try everything they have been taught but ﬁnd that nothing works. So, they touch the arm of the person with Alzheimer's, and speak softly and gently. Because of the patient's apparent distress, the caregiver may hug the person with Alzheimer's or give a kiss and tell the person that he or she is loved.

It is harder to write now. This is not a complaint. It is an observation. I can still talk, at least until I tire mentally. I cannot hide my weakness. So I meet with those who are like me in my support group. Some of them can no longer speak or write.

One day, if the caregiver is lucky, a revelation occurs. That person learns that the last thing we ever lose is love. Our memories may be gone. Intellect and logic may have diminished. We may have forgotten your name and where we are or what we are doing. But we remember love.

My wife, Peggy, and I also have been giving a presentation called "Prolonging Mental Life" to Alzheimer's patients, caregivers, and the medical profession. Often during these talks, I am asked how people can better relate to Alzheimer's patients. I steal my reply from a parable by Confucius: Learn from all things and from all people.

The talks Peggy and I give are little miracles given to me. I reach out to the audience. They reach out to me. There may be tears. Sometimes the tears are

One person I learn from is my friend, Jim, who has a later version of

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from sadness. Sometimes they are from an overwhelming feeling of love being present.

problem. Now having written that, I will write about what does bother me! It bothers me that I asked my daughter if she would take the clothes that I had washed home with her to put them in her dryer because there weren't enough places to hang them up to dry in my house.

Martin Luther King, Jr. once said: "Everybody can be great because anybody can serve. You don't need a college degree to serve. You don't have to make your subject and verb agree. You only need a heart full of grace. A soul generated by love."

"There's no neat pattern. Today I may be ﬁne and then tomorrow, not so ﬁne."

The spirit of the holiday season reminds us it is better to give than receive. Love is the greatest gift, to be given freely, without reservation or limit, with no expectation of return.

She didn't make any remark, but took them ﬁguring I had a good reason for asking. After she left, I realized that I have my own dryer that I have been using for the past three years!

May your love be a beacon, a shining example which lights the darkest night to warm the coldest heart.

I decided to put up a little shelf on the wall in my room. I brought my tool box out and opened it. I scrounged around for the nails and my small hammer. There in the box were my crystal decanter stoppers rattling around with the heavy tools. I had been looking for them for weeks. I have three decanters and here were the stoppers for two of them. I have not found the third one yet.

Volume 4, Number 3: February-April, 1999 What it's Like to Live with Alzheimer's By Sheila Editor's note: The following article is written by Shelia, a woman with early-stage Alzheimer's disease. The article was originally printed in the newsletter of the Vermont chapter of the Alzheimer's Association. We are grateful to Sheila and the Vermont chapter for permission to reprint her article I am getting along just ﬁne and a lot of the time I don't think about my memory

I wrote a lot of checks today to cover necessities, stuck them in their envelopes, and went to the desk to get my stamps that I keep in two brown envelopes. I have kept them in the same place for three years. They are not there. I have looked everywhere I think they could possibly be. I just can't ﬁnd them.

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One of the problems with having such a bad memory is the unbelievable waste of time spent looking for things or having to retrace my steps altogether. For example, I might go shopping without my wallet or go to the bank to cash a check which I have left at home. My daughter said that I had recently called her to ask if she had ever heard Spalding Grey. I then went on about how fascinated I was with him. She said that not five minutes after the conversation was over and the phones were hung up, I called back and started the conversation all over again. I confess to being unable to remember some conversations I have had at all. Some, I can vaguely remember bits of. If I want to call someone, I might head for the phone and walk right past it, and only later remember my intention. Or I head for the bathroom to take my pills, and it might take a few false starts before I remember to take them. I might forget altogether, or I might not. There is no rhyme or reason to my problem. I can't even say, "Well, I remember these kinds of things, but have a hard time remembering those kinds of things." There's no neat pattern. Today I may be fine and then tomorrow, not so fine.

often, I am not hesitant to ask, "You know, that thing in the garden made of wood with the leaves on it. What's it called?"

"The worst feeling is that of not being able to trust myself."

When I got home my friend was there, and I immediately started looking through the papers in my room. Beside my computer was a deposit slip for $2,000 from the day before. I couldn't believe my eyes. It made no sense. I phoned the fellow at the bank and told

This last week has been a bit discouraging as I again went shopping without any money. In the past, I would have gone to the bank after doing that. But this time, without going to the bank, I tried to go shopping again. And then I went to the coﬀee shop, forgetting each time that I still didn't have any money. I have had very embarrassing moments at the bank -- so much so that I was ready to change banks! Yesterday was a nightmare. I went in with two checks. I took one out of my purse and put it on the desk. The teller got up and went to get my money. When he came back, I told him I wanted to deposit the second check, but it had disappeared. We looked under the desk. I went through my purse which was full of stuﬀ. It was nowhere to be found. I was starting to get upset. The check was for two thousand dollars. We looked everywhere; it was nowhere. As I got up to leave, the teller wrote his number on a piece of paper and asked me to call him if I found the check at home.

One thing is that I'm as garrulous as ever! Sometimes there is a word-ﬁnding problem. Then I may be able to use a substitute. But since this happens fairly

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him that I had found it. How could I absolutely believe that I needed to deposit that check when I had already done it? The worst feeling is that of not being able to trust myself.

brushed my teeth that morning. Sometimes on my way home I drive right by my house and only notice it a few blocks later. Sometimes I forget whether I meant to say something or whether I have already said it. But often I remember the kind words the sweet smells sun-lit days someone's tender touch a book I loved a special event. I guess I remember more than I forget. From: "Too Wise to Want to be Young Again." Reprinted with permission from the author who does not have Alzheimer's, but relates to some of the experiences and conveys an important message in this poem.

I went shopping yesterday and left the keys in the car and the engine on. I've had to have my poor car broken into so many times that the door is practically wrecked. I have an extra key. All I have to do is remember to take it with me and then not to lock my purse in the car, as well! Editor's note: We are always grateful to hear about your direct experiences and reﬂections of living with Alzheimer's. Remember, Perspectives newsletter is a forum for your voice to be heard and for your experiences to be shared with others.

Sometimes I Forget By Natasha Josefowitz Sometimes when I dial a phone number by the time someone answers I forget who it was I was calling. Sometimes when I write a note to myself to answer a call or letter I forget where I put it. Sometimes when I leave the house I forget whether I left the lights on or the stove oﬀ. Sometimes I have to check if my toothbrush is wet to know if I have already

MAILBOX Dear Editor, I enjoy reading Perspectives and learning about the latest news and whatever else is going on in our famous world of Alzheimer's. I am doing well, I think. I have not been struck down yet! Best wishes and regards, Dorothy Sloane San Francisco Dear Editor,

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As the former caregiver for my mother who suﬀered many years from Alzheimer's disease, I would like to express my gratitude for your publication, and my regret that there was nothing like it during the years my mother and I waged our struggles. It would have helped me enormously, and I can only imagine how much it may have helped my mother during her early stages to learn that there were other people like her, and to read their thoughts and feelings. I am sure that her pain, apprehension, and loneliness would have lessened.

that I dashed off, but I thought it might be of interest to you and your readers: "A Little Lemonade" When life hands you a lemon, squeeze it and see if you can make lemonade. In September, 1998, I was diagnosed with Alzheimer's. Here's what I hope is a little sip of lemonade: Unlike the innocent child who may appreciate a flower simply for its beauty, when an adult sees a flower he immediately tries to think of its name and category, and whether it would please his girlfriend; he walks through life like a tourist with a camera always at his eye. Maybe if my memory loss causes me to forget the camera, it won't be a total misfortune.

Sincerely, Evangeline N. Dunbar Honolulu, Hawaii Editor's note: Evangeline Dunbar is editor of Caregiver-to-Caregiver, a quarterly newsletter written by and for persons caring for a chronically ill loved one. The newsletter covers a variety of issues including practical information about physical care, commentary about the emotional and family dynamics of caregiving, letters to the editor from caregivers sharing ideas, and updates on important legislation or federal programs aﬀecting caregivers.

The poet Wordsworth said: "Nothing can bring back the hour of splendor in the grass, of glory in the ﬂower." But I think Alzheimer's might. I hope I will not be given over to frustration, fear, or shame, but remember about the lemonade.

Dear Editor, I am a retired professor of sociology at University of California, Santa Barbara. I have been diagnosed with Alzheimer's and I'm interested in the quality of experience possible in life even as the disease deepens. This is just something

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Sincerely, Morris Ventura, California

Of how things were or what might have been. Did I think too much or induce a strain, Which caused this kind of mental drain? Little jobs awaiting that aren't done so well, For labored brain's struggling in its cranium shell. Then I read the note left at my side, It's not win or lose, it's only that you tried.

Dear Editor, Wow, your last issue of Perspectives was great! I loved the article about honoring those who care. It reminds me that sometimes deﬁnitions of "caregiver" are not always adequate. In our early-onset support group, we all reach out to each other for compassion and understanding. Some are very adept at perceiving what makes us tick. They make great caregivers. You also printed a letter written by Linda Raymer. She is a close friend of mine. She is very intelligent and has such a great sense of humor. You also wrote about the Memories in the Making art program. The founder, Sally Jenny, and I are also friends. She has helped so many of us in so many ways. Thanks to her work, I believe people treat those with Alzheimer's with more dignity and grace. Then ﬁnally, you printed an article I wrote awhile ago. Thank you so much. Enclosed is a recently written poem. I hope you enjoy it.

Regards and best wishes, Tim Brennan Sterling Heights, Michigan Dear Editor, I am writing to say how impressed I have been with the Perspectives newsletter. I have found the articles written by people with dementia both interesting and inspiring. I am a professional working in England on a pilot project for our National Alzheimer's Disease Society. I am offering support to people with dementia to express their feelings about their diagnosis and to explore their hopes and fears of the future. I would be very interested to hear from anyone with dementia who would like to share information on how they feel they most benefit from support, and what specific kind of support they find most useful. Please feel free to write me or to send correspondence by email. Congratulations again on such an informative newsletter!

The Reminder A reminder note for a "forget it not", Helps to aid my head's dry rot. Like tattered socks in worn out shoes, The mind is saying, we've paid our dues. I wonder at length every now and then,

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Best wishes, Debbie Booth Alzheimer's Disease Society in North Tyneside

Lang, an occupational therapist, with the hope that people in the early stages of Alzheimer's disease who remain active in the home and community may retain a higher level of cognitive functioning for a longer period of time. Nannette Lipton, also an occupational therapist, joined the program in 1994 and now serves as the Program Coordinator.

Editor's note: This is a lovely opportunity for readers to establish international channels of communication about the experiences of living with Alzheimer's disease and the kinds of services, relationships, interactions, and resources you ﬁnd helpful and supportive to you. Send your thoughts to both Debbie Booth at the address above and Perspectives at the address on page 2, and let the dialogue begin!

The goal of the Work Buddies Program is to restore a sense of purpose in the lives of individuals with Alzheimer's by providing meaningful activities in the form of volunteer work. The program focuses on the participants' abilities rather than their disabilities, and pairs the participant with a work buddy volunteer who is trained to provide one-on-one assistance, support, and companionship in the volunteer setting. Often, special friendships form between the work buddy and the participant with Alzheimer's: "I've liked every work buddy I've had over the years," Brownie (a participant) laughs. "It gives me somebody to boss around."

The "Work Buddies" Program It is not unusual to hear from people with Alzheimer's that they are seeking more meaningful activity in their lives. Memory loss can make it difficult to do the things that we once did, and interesting replacement activities are not always easy to find. In a few innovative organizations dotted across the country, programs that create volunteer work for people with Alzheimer's are attempting to fill some of this void. One such example is the Work Buddies Program based in Berkeley, California.

As a work buddy to a program participant, Sheryl ﬁnds the volunteer experience doubly valuable: "The program allows me to do volunteer work I enjoy doing while in the company of someone I can help do the work they enjoy, too." Participants in the Work Buddies Program typically volunteer two to three hours a week. Volunteer sites

The Work Buddies Program is designed to maintain the functioning of people with early-stage dementia in the community through volunteer work and the support of a "work buddy." The concept was developed in 1992 by Susan

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include (but are not limited to) animal shelters, elementary schools, gardening sites, and environmental organizations. The work can help soothe some of the challenges of Alzheimer's while providing a meaningful experience:

with you. Everyone can beneﬁt when we unite in a cooperative eﬀort to help each other and our communities.

Early Alzheimer's: An International Newsletter on Dementia

"When I have a bad day, the Work Buddies Program always makes me feel better. It takes the devil out of things, if you know what I mean. It takes the edge oﬀ and makes me feel calm."---Linda

Early Alzheimer's is a 12-page quarterly newsletter committed to bringing the Alzheimer's care community a forum for sharing both educational and service programs for persons in the early stages of dementia. Both national and international in scope, Early Alzheimer's covers a wide range of issues including early-stage program models and tips for their development, news of upcoming national and international Alzheimer's conferences, reviews of publications and resources, and care perspectives from both professionals and families. Early Alzheimer's was originally published by Robyn Yale, LCSW, and co-edited with Lisa Snyder, LCSW, as a way to establish channels of worldwide networking between professionals working in the ﬁeld of early dementia. Now under the auspices of the Santa Barbara Chapter of the Alzheimer's Association, Early Alzheimer's continues this mission to allow for a far-reaching sharing of ideas and innovative programs. This kind of resource can inspire the reader to recognize the ways in which communities can work to enhance the quality of life for those living with dementia.

An important goal for the program is to provide a level of stimulation and challenge that is rewarding, but not overly taxing or frustrating. This allows participants to capitalize on their abilities: "I look to do things that will beneﬁt me," says participant Shel. "Everyone does. This program gives me something to do." Very few communities are fortunate enough to have an organized "Work Buddies" program, but perhaps you can think of a friend who might be your "buddy" to share a volunteer project

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with a spouse or other support person, as well. Without researching and reading, I would probably still be wandering around wondering why I'd forget to lock doors at night or turn oﬀ the coﬀee pot; watch a rerun and not remember having seen it; lose track of the plot of a story continued from another night; forget special scripture; and occasionally, not understand what someone was talking about.

1998 Progress Report on Alzheimer's Disease The National Institute on Aging (NIA) is the United States Federal Government's lead agency in the search for the causes, treatments, and ultimate prevention or cure of Alzheimer's disease (AD). Each year the NIA funds researchers around the country who make gradual headway towards these goals. Although no cure exists yet for AD, there is reason to be optimistic. The NIA's "Progress Report on Alzheimer's Disease, 1998" outlines some of the highlights in research developments from the past year and outlines future directions for researchers in the years 1999 and beyond. AD research is divided into three general categories: understanding the causes or risk factors of the disease; making an accurate and early diagnosis; and providing for treatment and care of those living with the disease, both patients and families. The Progress Report highlights ﬁndings and developments in each of these important and overlapping areas.

"With information about Alzheimer's, what the future held, and what would be required for me to live alone safely, I began a plan of action." But armed with information, I persisted until my doctor came up with a diagnosis. My memory loss at age 65 was not "normal for my age" as other doctors had claimed, but was, indeed, early-stage Alzheimer's.

Volume 4, Number 4: May-July, 1999 Living On My Own with Alzheimer's By Carol LaBarge Editor's note: Although Carol writes this article to share her excellent strategies for coping with Alzheimer's as a person living alone, her advice is applicable to those living

I continue to read everything I can to better understand and live with

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Alzheimer's, but I ﬁnd that while there are volumes written about the disease itself and about caregivers and caregiving, there is virtually nothing written about me, the person living alone. I've learned some things in the past two years that have helped me live successfully. Alzheimer's is a disease that has diﬀerent symptoms to varying degrees at various stages, but perhaps my experiences and the knowledge gained along the way so far will be helpful.

understanding in time, and things that would clutter up my living space. My apartment consists of plain furniture and artiﬁcial (instead of real) plants. There is nothing to stumble over or confuse me, yet my surroundings are tasteful with beloved artwork decorating the walls. The kitchen and bathrooms contain only essentials, and there aren't lots of doors and windows to remember to lock anymore. There are fewer places to look for things and fewer things to look for. My living space and lifestyle is now simple and safe, thus making it possible to live on my own longer.

After some time spent in shock, disbelief, anger, and then grief, I was ready to face life with Alzheimer's. Of ﬁrst and foremost importance is my relationship with God. Next in importance is having information about the disease itself. I found an excellent book I refer to constantly: Alzheimer's: The Answers You Need (published by Elder Books, 1-800-909-2673). With information about Alzheimer's, what the future held, and what would be required for me to live alone safely as long as possible, I began a plan of action.

Next, I familiarized myself with the neighborhood and with my neighbors. It is important to leave a key with a trusted neighbor or friend and to have someone you can ask for help if need be. Depending on your degree of memory loss, it may also be important to have someone who will look in on you occasionally to make sure you are doing well. If you have no neighbor, friend, or relative, call your local Area Agency on Aging and explain your problem. They often have solutions. Also, call the Alzheimer's Association and ask for suggestions, and sign up for their "Safe Return" program. I also advised some neighborhood merchants and the local bank of my condition, as well as anyone else I felt should know in order to keep me functioning on my own longer. Alzheimer's is a disease and there is no reason to be ashamed of it. So,

First, I moved from a large home in a rural area to an apartment in the city where living could be safe, easy, less complicated, and where most things were within walking distance. Before moving, I got rid of things that weren't practical or enjoyable such as collections of books and treasures that I knew would be out of my realm of

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whenever I feel it would be helpful to reveal my condition, I do so without hesitation, but with discretion.

Finally, how you will receive personal care if you need help with it in the future is an important matter that is best to address early on. The Area Agency on Aging may be able to refer you to people who can help you make arrangements for in-home care or residential assisted living as needed. Choose home care agencies or residential care facilities now, so that arrangements are in place when you need them.

Living today can also be made easier by having someone help with household chores and meal preparation, or enrolling in the Meals on Wheels program to ensure a good meal once a day. It is also important to line up a method of transportation. Most of us think driving is a difficult thing to give up as it represents independence. It must be done, however, at the first sign of any difficulty. Yesterday I was driven for the first time by my designated driver, a 70 year old retired neighbor who is thrilled to have a few extra dollars now and then. I can tell you that it was not difficult at all. In fact, it was a relief not to have the worry of whether my response time is what it should be, getting lost, or becoming confused. I highly recommend not putting off getting out from behind the driver's seat. We must understand that it isn't just our life, but the lives of others we could be jeopardizing.

Be informed. Simplify your life and take all precautions necessary for safe living today. But above all, treasure each day and ﬁnd joy in it. Reach out. There is always an opportunity to show love to another human being. Say hello to someone in the grocery store or on the street; smile and wave at a child; share spirituality; comfort someone who is hurting. If alone and newly diagnosed, don't be frightened or sad. There is help. In time you will discover, as I have, that there are adventures to be had and that life can hold much happiness for those of us with Alzheimer's disease who live alone.

Legal and financial planning are next on the list. You may want a lawyer to help you with durable powers of attorney for health care and finances, and a will. Financial management can be made easier with the direct deposit of income and social security checks to your bank. An attorney, accountant, or social service agency will usually help manage finances and bill paying for a fee.

New Book: Speaking Our Minds - Personal Reﬂections from Individuals with Alzheimer's By Lisa Snyder, LCSW Reviewed by Daniel Kuhn, LCSW Lisa Snyder has done a magniﬁcent job of putting a human face to Alzheimer's

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disease. Mixing the verbatim remarks of seven men and women diagnosed with Alzheimer's along with the author's own solid commentary is a refreshing approach to understanding the disease. The narratives recounted in this book are ﬁlled with information and insights that any newcomer to Alzheimer's will appreciate. These stories are illuminating, sad, inspirational, and informative.

People can also say to a spouse, "Are you sure he has early Alzheimer's; he seems the same to me." We who live with it are only too aware it's there. Early stage support groups and Perspectives allow us to accept it with much more grace than might otherwise be possible.

Not everyone with Alzheimer's can be as eloquent as the people quoted in this book, but their perspectives can shed light on the experiences of others with the disease. My only criticism is that I wanted to read more personal stories than the seven presented in this beautifully written book. As a social worker and an education director at an Alzheimer's center, I look forward to recommending this book to families and professionals alike. We need more stories like these to be told from the viewpoint of those with the disease. The author has made a major contribution to the growing literature on the early stages of Alzheimer's. Speaking Our Minds, by Lisa Snyder, is available by order through your local bookstore.

Dear Editor, Since my last letter to you in November of 1996, I have continued to deteriorate. But in February of 1997, with the help of Aricept, I started to notice some improvement. I am still on Aricept, vitamin E, and a blood thinner (to lessen the chance of stroke). I seem to be on a plateau that has lasted about 2 years now. I still have trouble remembering names, but I am driving, and working on my sailboat and in my garden. When I was diagnosed with Alzheimer's, I was depressed at ﬁrst, and then I went into denial. Luckily, I stayed on my medication during these negative periods. After much reading and a lot of researching on my own, I have been able to recreate my life. With the help of Aricept, my vitamin supplements, a change in my diet, and 3 to 4 hours of physical activity daily, I am encouraged by my progress. I can go on with my life!

Peggy Anne Davis Berkeley, CA

MAILBOX Dear Editor, Thank you for your attention to early Alzheimer's. Like the ﬁrst trimester of pregnancy, people can look skeptical and say, "You don't look pregnant."

Eddie Domingue Lafayette, Louisiana

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Q. I'm having a lot of trouble when I try to read. Is this part of Alzheimer's? A. It is very common for people with Alzheimer's to have significant difficulty with reading. Memory loss can affect the concentration required to keep track of written content. Some people report that by the time they have read to the bottom of a page, they have forgotten the content that was at the top. Also perceptual and visual changes in the brain may make it difficult to decipher letters or words, or to comprehend their meaning. Thus reading can become a very frustrating and unrewarding process. But don't lose hope! A wonderful resource can be of considerable help.

Editor's note: The following message is written to Sheila, the author of last issue's front page article entitled "What It's Like to Live with Alzheimer's." Dear Sheila, We are twins with our common problems. I really empathize with you! I'm originally from New Hampshire and if I get back out there to see my brother and sisters, maybe I could be lucky enough to call and talk with you or meet you! Norm Gagne San Diego Dear Editor, We use the Perspectives newsletter in our early stage memory loss support group for both the participants and caregivers. It is very informative and easy to read.

Editor's note: Last issue we reported on the Work Buddies Program. We neglected to mention that the program is out of the Alzheimer's Services of the East Bay (ASEB), in Berkeley, CA. We are always grateful to receive your correspondence.

The National Library Service for the Blind and Physically Handicapped has a talking-books program that produces books and magazines on tape. More than 67,000 ﬁction and non-ﬁction books are available, as well as poetry, short stories, and news weeklies. A network of cooperating libraries across the country loan both the cassette tapes and the easy to use cassette equipment to eligible readers. Tapes also can be loaned out and returned through the mail. A reading disability based on Alzheimer's disease or a related disorder makes one eligible for this excellent program. The program is free of charge.

Questions and Answers

Research Update

Thanks, Karen Martyn Redmond, Washington

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Many people with Alzheimer's disease experience weight loss. Sometimes the person with memory loss forgets to eat or may have changes in appetite resulting in poor nutrition. For others, agitation or anxiety about their condition may promote weight loss. Also, Alzheimer's disease can affect portions of the brain responsible for weight, or can in some cases even make swallowing more difficult. Scientists do not fully understand the reasons for or significance of weight loss in Alzheimer's disease, but a new study from Duke University Medical Center may shed some light on this important topic.

pounds. The researchers suggest that proper nutrition and avoidance of excess weight loss are important components in reducing the increased mortality risk associated with weight loss in persons with Alzheimer's disease. This research finding reinforces the importance of paying attention to our eating habits. While some fluctuations in weight are natural, significant and prolonged weight loss may be cause for concern and warrant discussion with your doctor.

Companionship: A Critical Component to Living with Alzheimer's When we identify some of the eﬀective ingredients for coping with Alzheimer's disease, it is easy to overlook the role of companionship. Sometimes we take for granted the presence of key family and friends in our lives and the comfort we derive from knowing someone is there for us. In Carol LaBarge's article on living alone with Alzheimer's, it is important to note that in the absence of living with a loved one or "caregiver", Carol has eﬀectively worked to establish some means of companionship and community in her life. Positive interaction with others is an important component of maintaining our social, functional, and communication abilities. Just as we value companionship, so too do we sometimes value solitude or the

Duke scientists studied weight changes over time in 666 patients with Alzheimer's disease. Findings indicated that a weight loss of 5% or more in any given year since onset of disease was associated with an increase in the risk of death. However, weight gain of 5% or more in a given year was associated with a decrease in the risk of death. For example, if you weigh 160 pounds, this would be a weight loss or gain of 8

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independence of choosing when and with whom we will seek companionship. But when Alzheimer's enters our lives, we must gradually recognize the many ways the disease aﬀects our choices about being alone or being in the company of others. Personal independence must be balanced with responsible attention to safety, emotional and physical well-being, and the needs or concerns of our loved ones. You may wonder when it may no longer be wise to be on your own for any given period of time. There are certain things to look for that indicate when it may be important to accept the companionship of someone else when your caregiver is not present.

You are sleeping, watching a lot of TV, or becoming lethargic during your loved one's absence. As such, you are not getting the meaningful activity and stimulation that is helpful to your mind and body. No one wants to have someone hovering over their shoulder all of the time, but a sensitive friend or companion will learn what kinds of activities you enjoy, and may have some new ideas, as well. There is an accident or unhealthy circumstance as a result of your memory loss or confusion (i.e. burning a pot on the stove; leaving the hose on the garden outside; forgetting to eat; or forgetting to take important medicine). It is critical to have someone close by on whom to rely in case of such an emergency or oversight.

Bear in mind that your caregiver may notice some of these indications before you do:

You have had an episode of getting lost or disoriented when taking a walk on your own while your loved one is out.

You become lonely, bored, irritable, or anxious when your loved one leaves. It may seem like he or she has been gone all day when it has really only been a few hours. Even when your caregiver leaves a note, it is easy to overlook it. Or you may read it, but due to the memory loss, forget what the note says a few moments later. The companionship or presence of another person can lift some of this stress and serve to remind you of the whereabouts of your loved one, and when he or she will return.

Your caregiver experiences stress or anxiety when having to leave you alone. Some people with Alzheimer's resent the thought of needing to have a companion. But perhaps your loved one feels more reassured if someone else is in the house with you. Sometimes we agree to having someone else in the home because it eases our loved one's stress or concerns even though we feel we are perfectly ﬁne left alone.

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Just like any friendship we enter into, ideally we want to screen potential companions for compatibility. You and your loved one may interview candidates, or you may already know someone in your social circle who would enjoy spending some time with you when your loved one has to be away. You may want to check a person's references and also consider the fol-lowing when evaluating a potential companion:

the companion's hobbies and determine whether you have things in common. A companion can also be a helper. If your loved one has to be out for the day, it is important to have someone to help with the meal preparation or assist with anything else around the house as needed.

Some people prefer someone their own age or gender. Others ﬁnd that personality or shared interests may be more important considerations that are not always dependent on age or gender. It is important to have someone in your life who is familiar with Alzheimer's or at least willing to take classes, receive literature, or learn about what you are experiencing. Some people with Alzheimer's don't mind explaining their condition to someone else. Others ﬁnd these explanations tiring and it is helpful if a companion has basic knowledge about the disease.

Companions can come from various sources including: ● Home health care agencies ● Alzheimer's social programs ● Senior citizen center registries ● Friends ● Neighbors ● Extended family members ● Churches or synagogues

Determine whether the companion has a car and will be able to drive you places. Some people are only comfortable visiting in the home while others enjoy the option of going on an outing with you and are very willing to drive. Evaluate shared interests. It is always helpful to have common ground on which to build a friendship. Evaluate

Throughout the course of Alzheimer's disease our social life and sense of community will undergo shifts and changes, but being open-minded to the beneﬁts of companionship can open the door for new experiences and potentially rewarding friendships

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VOLUME 5

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Volume 5, Number 1: August-October, 1999 Early-Onset Alzheimer's: Understanding the Concerns of Younger Families New Drug Study Information on the ADEAR Web Site Kindred Spirits by Linda Raymer My Alzheimer's Friend Can the Fillings in Our Teeth Cause Alzheimer's? Varied Voices: Individuals with Alzheimer's Share Their Thoughts Volume 5, Number 2: November - January, 2000 Moving Forward Into the New Millennium: Hopeful Advances in Alzheimer's Research, Support Services, and Care Thoughts From an Early-Stage Alzheimer's Support Group New Resources: Alzheimer's Early Stages - First Steps in Caring and Treatment by Dan Kuhn, MSW Fact Sheet: Early Stage Alzheimer's Lifelines: The Memory Connection Lessons Learned from Geese

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Volume 5, Number 3: February-April, 2000 Person-Centered Care: Honoring the Individual with Alzheimer's 1999 Progress Report On Alzheimer's Disease Now Available Do You Remember? By Tim Brennan The Meaning of Support Groups What Other People Notice by Saal Lesser Volume 5, Number 4: May-August, 2000 A Letter to Caregivers by Carol LaBarge In The News: Exelon Finally Approved! Support Group Members Write to Congress Preventing Falls: Reducing Risk for Individuals with Alzheimer’s

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Some cases of early-onset Alzheimer's are the result of certain gene mutations (located on chromosomes 1, 14, and 21) that are passed down through families. A parent with early-onset Alzheimer's caused by one of these rare genetic mutations risks passing the gene on to their children. If a child inherits the gene from the parent, it all but guarantees that he or she will also develop Alzheimer's at about the same age that the parent developed the disease. (Remember, this is before age 65). Multiple members of a family can be aﬀected who then risk passing the gene on to their own oﬀspring. But it is important to remember that not all early-onset Alzheimer's has been linked to genetics, and scientists are not always certain why the disease strikes someone at such a young age.

Volume 5, Number 1: August-October, 1999 Early-Onset Alzheimer's: Understanding the Concerns of Younger Families "I always expected to get ill or have Alzheimer's when I got older, not now when I'm in my thirties." When we think of Alzheimer's disease, our images and impressions are usually linked with aging. Indeed, age is the greatest risk factor for Alzheimer's, and one's chances of acquiring the disease double with every ﬁve years after age 65. As a society, we are living longer and growing older. Research indicates that about 20% of the population will have Alzheimer's by age 85, and up to 60% will have it after age 95. But in recent years, we have become increasingly aware of a growing number of individuals who acquire the disease before age 65. These individuals range in age from their early 30's to their early 60's and have what is termed early-onset Alzheimer's.

Persons with early-onset Alzheimer's experience the same symptoms of the disease as those who are older, but they and their loved ones often experience a unique set of familial, social, and economic challenges. In many families with early-onset Alzheimer's, it is not uncommon to ﬁnd children or adolescents still living in the home.

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Children may experience many different feelings as they try to cope with the changes in their affected parent. They may be in need of care from a parent at the very same time that a parent with Alzheimer's is needing more assistance or care for herself. There may be added stressors placed on young family members as they try to juggle the responsibilities of both school and home. Sometimes these challenges can pull a family closer, but there may also be awkward or disruptive times when roles are changing and family members (including the person diagnosed) are having to make significant adjustments:

Although some families can weather these challenges with flexibility and humor, often parents and children benefit from counseling or professional guidance as they attempt to adjust to the changes in relationship roles. Your doctor or local chapter of the Alzheimer's Association may be able to provide referrals for skilled family counselors. The "topsy-turvy" feelings Bill describes are common to people with early-onset Alzheimer's. Younger diagnosed individuals are often actively involved in their careers, raising families, and earning income necessary for comfortable retirement. Their spouses may also still be working outside the home and are challenged to meet the responsibilities of caring for their loved one while also maintaining their job. Legal and financial planning become priorities as couples adjust to changes in income and expenses brought on by disability. Since the great majority of people experiencing Alzheimer's disease are over age 65, early-onset families frequently have difficulty meeting peers who can relate to their circumstances and find themselves in support groups and Alzheimer's programs with individuals up to 40 years their senior. Some communities are beginning to develop special programs for early-onset families in an attempt to build social connections and decrease the isolation experienced by many of

"My sons are dealing with this very well. They're good kids. They are always joshing me, and it's fun. They used to learn from me and now I have to learn from them. I don't really like it. I feel like it's topsy-turvy, but that's the way it has to be." (Bill, diagnosed at age 54).

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these families. But while diﬀerences are very real, so are the many shared experiences that can unite individuals with Alzheimer's of varying ages. Bill (quoted earlier) speaks to this experience on his ﬁrst day of attending a support group:

want to see London and Paris." (Consuelo, age 34). Although a very small percentage of those living with Alzheimer's are early-onset, the often unique circumstances of these individuals and families warrants our attention. We can all learn about one anothers' unique perspectives and needs by opening up opportunities for communication through support groups, attentive listening, and working to provide specialized services to younger families when needed. Young and old, we can unite to face Alzheimer's together.

jumped at the opportunity. I had been diagnosed for two years but I had never known or even seen another patient! When the ﬁrst day came, I was a bit nervous but I looked forward to meeting new friends that I could relate to. When we ﬁrst glanced at the group, I thought we were in the wrong room because everyone else was at least ten or twenty years older than us. But that distinction began to melt away when we found that we were all in the same boat and in that sense, all the same age."

(Article quotes from Bill and Consuelo reprinted with permission from "Speaking Our Minds - Personal Reﬂections from Individuals with Alzheimer's" by Lisa Snyder, W.H. Freeman Publishers).

Persons with Alzheimer's all share some common feelings, thoughts, and creative strategies regarding living with memory loss and can be a great support to one another regardless of age. We can all build community by recognizing our common ground. But it is also true that for those diagnosed younger in life, there can be an added sense of urgency:

New Drug Study Information on the ADEAR Web Site http://www.alzheimers.org Established by the National Institute on Aging, the Alzheimer's Disease Education and Referral (ADEAR) is a clearinghouse authorized to collect, catalogue, and distribute information concerning Alzheimer's disease (AD). ADEAR serves as a resource for diagnosed individuals and their families, health professionals, and the general public. Through a simple phone call ADEAR staﬀ will respond to requests for information about the

"I don't know if it's harder at my age than it would be if I were 70. Maybe it would be the same. But I always expected to get ill or have Alzheimer's when I got older, not now when I'm in my thirties. It does make me want to do things now, like traveling, that I might have postponed until later years. I

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diagnosis and treatment of AD, available services, updates in all areas of research, resources speciﬁcally for early-stage or early-onset diagnosed individuals, or whatever speciﬁc area of interest you may have.

support and encouragement to each other - even a laugh now and then. This is what we receive from the Perspectives newsletter, as well. I have written a tribute to my friends with AD in my support group to let them know that they are important to me. I have enclosed a copy. I would like Perspectives to report on caregivers who are still employed and how they are coping. I believe it needs to be addressed. There are extra burdens in their lives - concern for their job and their loved one with early-onset AD.

ADEAR'S most recent service will be particularly helpful to those linked up to a computer and the web. The National Institute on Aging has established a new clinical trials database of promising drugs to treat Alzheimer's disease. Developed cooperatively with the Food and Drug Administration, this database provides information about Alzheimer's medication trials, test sites, and important details on how to participate. This data base is now available on the ADEAR web site (listed above). At this site, you will ﬁnd research study designs, modes of action of promising drugs, eligibility criteria for volunteer participation, and locations and contact information for participating study sites. To access the information, go to the web site listed above and click on the link for "Clinical Trials."

Sincerely, Linda Raymer Clinton Township, Michigan Editor's note: We always appreciate hearing ideas from our readers about articles or topics you would like to have covered in Perspectives. Please send your correspondence to Lisa Snyder at the address listed on page 2. See page 1 for our article Linda inspired on early-onset Alzheimer's and the unique circumstances for both those diagnosed and their families. In the following column is Linda's poem (as mentioned above in her letter) dedicated to her fellow friends with Alzheimer's.

MAILBOX Dear Editor, I can identify with the article "In Honor of Those Who Care” in the Perspectives newsletter (Volume 4 Number 2). The role of the caregiver for a person with Alzheimer's disease (AD) is obvious and understood. It is also true that people with AD in support groups care for each other. They give

Kindred Spirits My Alzheimer's Friend by Linda Raymer Two peas in a pod we have nowhere to go.

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Inhibitions aside all our ducks in a row.

Research Updates Potential Alzheimer's Vaccine in the News Recently the news reported on the hopes for a new vaccine that could prevent or arrest the progression of the abnormal amyloid protein deposits (plaques) associated with Alzheimer's disease. These plaques are found in the brains of those with AD and are thought by many to be a possible cause of the disease. Researchers at Elan Pharmaceutical Company in San Francisco, California injected mice who had been bred to develop Alzheimer's with an amyloid vaccine and found that many of the mice did not go on to develop the disease. Those mice that did have the disease actually showed a reduction in the number of plaques in their brain indicating that the vaccine may have the potential to reverse some of these abnormal protein deposits.

Hand in hand down life's road 1+1=2 A certain serenity me and you. We laugh, we cry some words unspoken. Conniving is good, our bond unbroken. No harm can come when there are two. There is strength in numbers. I need you. Dear Editor, I work at the Alzheimer's Disease Society (United Kingdom) National Oﬃce and am part of the specialist project looking at the needs of younger people with dementia. We are interested in better understanding the unique experiences and needs of younger families with Alzheimer's. We would be most interested to hear from any of your readers about their personal experiences with early-onset dementia, or about programs that people are providing to meet the needs of these families. Perhaps we can exchange ideas.

The vaccine finding is cause for both celebration and caution. The good news first: If amyloid plaques are the primary cause of Alzheimer's disease and the accompanying death of brain cells (neurons), then it is very hopeful to work towards a vaccine that could help the body fight off the formation of these plaques. Such a vaccine could prevent the onset of AD, or help the body fight off the progression of the disease if it is already underway.

Thank you, Laura Baker Alzheimer's Disease Society

The caution is that scientists are not sure that the amyloid plaques are the main cause of the memory loss and other

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progressive symptoms associated with Alzheimer's. So preventing or reducing plaques by a vaccine may not change the eﬀects of the disease. But even if the vaccine helps scientists answer this fundamental question about the role of amyloid plaques in Alzheimer's, it will have been a very worthwhile discovery. Also, thus far, the vaccine has only been tested in mice. Mice brains and human brains are not exactly alike (thankfully), and we will have to wait for human trials to evaluate the vaccine's eﬀects on people.

significant differences in brain mercury levels between those with Alzheimer's and those without. The scientists concluded that mercury in dental fillings did not appear to play a role in Alzheimer's disease.

Varied Voices: Individuals with Alzheimer's Share Their Thoughts Editor's Note: The following reﬂections come from participants of an Alzheimer's Social Center in Oceanside, California, where those in attendance also have the opportunity to participate in a support group. We are grateful to Heather Murphy for her interest in interviewing participants, and to Grace, Frank, John, and Millie who share their thoughts with us. Their messages illustrate the varied thoughts, feelings, and coping strategies involved in living with Alzheimer's and remind us that each person with this disease remains a unique human being.

Elan Pharmaceuticals is hoping to conduct a safety trial of the vaccine on humans within the next year.

Can the Fillings in Our Teeth Cause Alzheimer's? Occasionally families or persons with Alzheimer's hear from their dentist or health food store that the mercury in their dental fillings could be toxic and lead to Alzheimer's. Some go so far as to have all of their fillings replaced with non-mercury based amalgams. In a recent article in the Journal of the American Dental Association, scientists addressed this controversy by examining at autopsy the levels of mercury in the brains of persons with Alzheimer's as compared to those without the disease. The scientists did not find an association between the number or size of dental fillings and Alzheimer's. There were also no

Grace I have had Alzheimer's for about a year and a half. I never think about it. It's not painful or something to be ashamed of other than you wonder how long it will last. But that doesn't bother me. I'm a "persist and get well person." I have a positive attitude. I cried the day I found out I had Alzheimer's. I don't know why. My daughter called and told me. I just hadn't had anything wrong with me in so long. I have opened my mouth a lot at the support group. I hardly ever shut it! I

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just feel positive that there will be somebody who takes an interest in all of this and makes it positive. My twin sister doesn't have Alzheimer's. I don't have any feeling it's rubbed oﬀ on anybody or anything. It's just something that my daughter told me I had and I never think about it You don't have a badge or anything on saying you have Alzheimer's. So, I say just be normal! I'd like more people to take an interest in Alzheimer's. I try to do as much as I can.

John I felt real bad when they diagnosed Alzheimer's. My life has gone downhill as Alzheimer's-type things happen. It's tough to accept that. But I'm not going to cry about it. I'm not going to think about it. If I can help people, I do. My diagnosis was early on when a lot of people didn't understand about Alzheimer's. I had heard about it but not as much as you do now. I'm not trying to get people to do things, but if people are wondering about Alzheimer's or are hurting about it then I'm glad to talk to them and make it known so they can realize what it is. I think it does me a lot of good to come here to the Center.

Frank Alzheimer's, it's the pits. There's not one thing on earth you can do. It comes and goes. You have no control over it. Sometimes I think I'm just still in the infancy of the whole thing. I'll go another ten years probably. Each day I get a little more confused and I just can't do anything. I've lost weight. I think it's just because I'm not eating as much. It's just a trap that I'm in. Now I wish that I had not discovered that I had it. I think that I would have been a happier person. My wife sensed near eight years ago that something was going haywire in my brain. I'm 74 now.

Mildred (Millie)

About a year ago, I found out that I had Alzheimer's. I had worked in a hospital for so long I pretty much knew what it was all about. So, I was working just this last year. It hasn't been so bad. It's just that I forget things. I still live alone. I still drive a car. I still do everything I used to do. I still read. I've got a lot of friends and family.

Editor's note: While it is understandable to have discouraged feelings about Alzheimer's, feelings of hopelessness, changes in appetite, or disinterest in activity may be signs of a treatable depression and warrant discussion with a doctor.

I talk about it. My daughter is a nurse and she's very good. I haven't changed that much in my lifestyle except that I used to be working and I've retired now. Coming to this Center gives me a place to go. I don't sit home and watch TV all

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day. I try to do diﬀerent things. I do a lot with my grandchildren and I take care of them. We play a lot together. They keep me going. I'm not a kid anymore though. Let's see. How old am I? I'm 72!

quit going anywhere because she said, "Well, I just can't cope with it." And I said, "That's silly because the only one who can change it is you!" So, I keep busy. If you're going to sit at home and say "poor me", that's exactly what is going to happen and I don't let that happen to me.

QUESTIONS AND ANSWERS Q. I have trouble getting my words out when I'm trying to speak. Is this a part of Alzheimer's? A. Many people with Alzheimer's describe difficulty with speech. Initially, Alzheimer's affects one's memory, but the disease can also progress into regions of the brain responsible for language. This may result in difficulty with speech fluency and word-finding known as aphasia. For example, you may have a thought in your head and go to express it, but find that you get stuck partway through and can't find a necessary word. Sometimes by the time you get the word out, it is difficult to remember your train of thought to complete the sentence. People with Alzheimer's also describe times when they think they are about to say a word but when they go to speak, something totally different comes out! This can be quite a surprise, and scientists call these incidents paraphasic errors. These forms of aphasia can be very frustrating if they happen often, and may result in a person becoming quieter or more reluctant to participate in conversation.

For so long, nobody knew what Alzheimer's was. Working in a hospital, I knew what it was. It's quite a blow when you ﬁrst realize it because I've seen people in the hospital who didn't even know who they were. My doctor said basically,"you're really on the edge not a real patient." The doctor said keeping busy is the secret. I have a friend who has Alzheimer's and the minute she found out she had it, she

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If you experience aphasia, it is important to try to simplify what you want to say and allow for time to express yourself. When you are rushed or feel others' impatience, the problem worsens. If you cannot think of a word, try to find another substitute instead of fighting the problem, or ask for help from the person with whom you are speaking. It is sometimes surprising how someone else may be able to guess what you are trying to say and save you a lot of effort!

"This is a very rich time for Alzheimer's disease research, and developments like these today are capable of changing the course of research tomorrow." -- Bill Thies, PhD National Alzheimer's Association Vice President of Medical and Scientific Affairs Gene Therapy University of California, San Diego scientist Dr. Mark Tuszynski recently received approval from the US Food and Drug Administration (FDA) to use a gene therapy procedure involving nerve growth factor (NGF) in eight individuals with early-stage AD. NGF is a natural substance that has been found to prevent the death of certain nerve cells in rats and monkeys. These nerve cells are necessary for brain functioning. These cells die in the process of Alzheimer's and this results in the progressive loss of memory and other abilities associated with the disease. In this experiment, genetically modified cells that are responsible for the creation of NGF will be injected through a needle into specific areas of the brain to ensure that it reaches the exact spots necessary for benefit. Dr. Tuszynski will follow the persons in the study over time to determine whether the introduction of NGF into the damaged areas of the brain can help these individuals maintain or even improve their mental functioning. If this study proves safe

Volume 5, Number 2: November - January, 2000 Moving Forward Into the New Millennium: Hopeful Advances in Alzheimer's Research, Support Services, and Care As we usher out this century, and welcome in the next, recent advances in Alzheimer's research, potential treatment, and quality of care are giving many cause for hope. Each advance opens another door that leads us towards the understanding, prevention, and ultimate cure of this disease, as well as to more sensitive care of those millions of families worldwide who are aﬀected by Alzheimer's. The following article highlights innovative investigations and programs that are underway as we move into the new year.

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and eﬀective, this gene therapy could be a very exciting development in eﬀorts to stop the progression of Alzheimer's.

Discovery of a Key Enzyme Recently scientists at Amgen, a large biotech company, isolated an enzyme that plays a significant role in the development of amyloid protein. This enzyme breaks down into smaller pieces a larger normal protein found in the body. These broken off pieces can eventually become amyloid, accumulate in the brain, and ultimately, form plaques. The next step in this enzyme discovery is to find safe drugs that can block the action of this enzyme in the hope that reducing its amyloid production will prevent or slow Alzheimer's. Several pharmaceutical companies are already working on drugs that are targeted towards this effect.

Two other important new discoveries aim to stop the development of the amyloid protein plaques found in the brains of persons with Alzheimer's. Many (but not all) scientists think these plaques could be the cause of the disease. If amyloid is truly the main villain, these interventions could help to ward off or prevent progression of the disease: A Possible Vaccine Researchers at Elan Pharmaceutical Company in San Francisco injected mice who had been bred to develop Alzheimer's with an amyloid vaccine (called AN-1792) and found that many of the mice did not go on to develop the disease. Those mice that did have the disease actually showed a reduction in the number of plaques in their brain indicating that the vaccine may have the potential to reverse some of these damaging protein deposits. Thus far, the vaccine has only been tested in mice and it is not clear whether it will have the same effect on humans. Elan Pharmaceutical has to conduct safety trials of the vaccine first. If the use of AN-1792 proves safe for humans, larger clinical studies on persons with AD could begin at the end of the year 2000.

New Drugs and Ongoing Studies The Food and Drug Administration (FDA) recently granted approval for the drug rivastigmine (Exelon). Exelon works like Aricept and Cognex by limiting the breakdown of a neurotransmitter in the brain (acetylcholine) that is responsible for memory. This chemical is reduced in the brains of person with Alzheimer's. These drugs do not stop the progression of the disease, but may help you maintain some memory and abilities for a bit longer. While these new medications are exciting, they may work better for some people than for others, and only for a limited amount of time. Exelon should be on the market in the very near future, and you may want to

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discuss with your doctor whether this would be a useful medicine for you.

in your area (see page 2 for contact information).

Growth in Early-Stage Awareness Throughout the course of Alzheimer's disease both those diagnosed and their loved ones experience many challenges. In the past, physicians were either unable or reluctant to diagnosis Alzheimer's until the later stages of the disease. This postponement often left individuals and families struggling alone for many years without the assistance of educational or support services. With advances in early detection of Alzheimer's, many physicians are diagnosing the disease earlier in its course, and families now have the opportunity to utilize a growing number of programs and services tailored to the earlier stages of the disease when memory loss is more mild. Across many regions of the world, we see the development of support groups, educational programs, and social programs for newly diagnosed or early-to-moderate stage persons. These programs can alleviate the isolation that so often accompanies a diagnosis of Alzheimer's and families can begin to build the sense of community that is helpful when facing this disease. There is much work to be done in this arena, however, and we frequently hear from families who do not yet have early-stage services in their communities or regions of the world. Feel free to contact us here at Perspectives for ideas on how to get programs started

Quality of Care Throughout the course of Alzheimer's disease, we are seeing a growing movement towards "person-centered" care. If we are person-centered, we acknowledge the uniqueness of each individual living with Alzheimer's and try to approach our care of that person in a manner that honors his or her dignity. We work towards ways to find and honor the self, even when that identity is undergoing profound change. We see this person-centered approach in attempts to create compassionate, creative, and meaningful social, educational, and support programs as well as in the creation of more encouraging and life-affirming living arrangements for persons with Alzheimer's who need long-term care. (to be discussed further in the next issue of Perspectives). Also with our rapidly developing communication technology, individuals from around the world can more readily exchange ideas, developments, and advances towards the prevention, treatment, care, and ultimate cure of Alzheimer's. We are indeed an international community united in common goals, and as we move into this new century, we have no doubt but that these goals will be furthered in very meaningful and exciting ways. This is a collective world-wide effort and each person counts!

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● Have a sense of humor; it helps to laugh at mishaps that might otherwise frustrate you. ● Ask for help as you need it; do all you can for yourself; be patient if it takes extra time. ● Don't think of asking for help as an imposition; think of it as letting someone help you rather than watching you struggle. ● Give yourself a break when you forget things; dwelling on it only makes it worse. ● Be patient with those who love you as they are also in need of support. ● Remember that you are not Alzheimer's disease; your life is full of accomplishments. ● Use reminders such as notes, calendars, medication sets. ● Tell people that you have Alzheimer's disease; it will help explain why you forget things and reduce your stress at trying to cover up mistakes. ● Plan for your future; see an attorney or ﬁnancial planner and have family meetings ● Be an Alzheimer's activist; advocate for yourself and others with dementia.

Thoughts From an Early-Stage Alzheimer's Support Group Editor's note: The following information was given by participants of the Early-Stage Alzheimer's Support Group, co-sponsored by Alzheimer's Services of the East Bay in Berkeley, and the Alzheimer's Association of the Greater San Francisco Bay Area (both in California). We are grateful to both organizations and to those who contributed the advice, for their permission to reprint this material. Advice for those who are in the early stages of Alzheimer's disease

Advice for caregivers of people who are in the early stages of Alzheimer's ● Remember that I am still a bright and articulate person with an illness that sometimes aﬀects my ability to do

● Get into a support group.

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● Don't lose patience if I ask something more than once. It is simply my way of letting you know that I don't remember what you said the ﬁrst time. ● If I had a broken arm, you would not blame me for being unable to do certain things. Don't blame me for the ways Alzheimer's aﬀects my ability to do some things. ● 9 out of 10 times it is okay to remind me about something; go ahead. ● Have a sense of humor; it helps me to lighten up about things I may have trouble with. ● Don't take responsibilities away from me; I want to be included in our life and decisions. ● Remember that I am aware life is hard for you right now. It is just hard for me to say that to you. ● Get into a support group. You need support as much as I do.

New Resources: Alzheimer's Early Stages - First Steps in Caring and Treatment by Dan Kuhn, MSW Families and those diagnosed with Alzheimer's disease (AD) frequently convey frustration with the lack of literature relevant to the early stages of the disease. The great majority of books, (while often eventually useful), convey an overwhelming amount of information about symptoms, problems, and concerns related to more advanced disease. This information can both overwhelm and frighten families who are trying to address the more immediate concerns of a new diagnosis. Now, with Alzheimer's Early Stages, Dan Kuhn, MSW, Education Director at Rush Alzheimer's Center in Chicago, has given a comforting and resourceful guiding light to those just beginning their Alzheimer's journey.

Advice for physicians when diagnosing someone with Alzheimer's ● Don't call it "dementia." The word "dementia" does not soften the blow of hearing you have Alzheimer's disease, and it may connote madness. ● Don't tell me there is nothing to be done. I have found there are support groups and other resources for myself and my family that can be very helpful.

Destined to become "The 36-Hour Day" of early-stage Alzheimer's care, Alzheimer's Early Stages does a sensitive and comprehensive job of addressing the medical, emotional, and practical concerns inherent in the earlier stages of AD. Chapters cover diagnosis and treatment; early symptoms and the subjective experiences of both diagnosed persons and their families; relationship changes; eﬀective communication; meaningful activity; planning for the future; and more. Throughout the text, the author

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interweaves quotes and comments from individuals and families, thus giving a very personal yet practical tone to the book. The book ends with a comprehensive resource appendix of AD agencies, and written, video, and internet resources. This well-researched appendix may become outdated as the numerous addresses change. None the less, the reader is provided with a valuable opportunity to access the wealth of provided information and to update references as needed.

recommended reading. This fact sheet covers the essentials and is an excellent way to begin dialogue and to take steps towards eﬀectively coping with Alzheimer's. The Fact Sheet on Early Alzheimer's is available on the web at www.caregiver.org.

Lifelines: The Memory Connection Editor's note: We thank Alan Dienstag, Rea Kahn, and the New York City Chapter of the Alzheimer's Association for permission to reprint this revised article from their newsletter (vol.14, Spring 1999).

Although Alzheimer's Early Stages is directed to those who care for a person with AD, the respectful, informative manner of the book could be meaningful to those diagnosed, as well (especially Chapter 5 on the subjective experience of AD). Mr. Kuhn is to be commended for this very valuable contribution to the AD literature.

Alzheimer's has a way of stealing memories but an innovative writing workshop called "Lifelines" helps to preserve them. Communication is more than words, but words are the "lifelines" that keeps these participants with early-stage Alzheimer's connected to their memories.

Fact Sheet: Early Stage Alzheimer's Family Caregiver Alliance based in San Francisco, California, assists families of persons with Alzheimer's and other brain disorders. They have recently published a six-page fact sheet on early Alzheimer's addressed speciﬁcally to the person with the disease. The brief but useful material covers early diagnosis and intervention; early-stage symptoms; changes in daily routine; treatment and research; ways of coping; community resources; and

Guided by Dr. Alan Dienstag and author Don De Lillo, the members of this writing workshop rescue the stories of their lives from the edge of oblivion. After the participants put their stories down on paper, they read them aloud to each other. In January, 1999, six participants of the Lifelines writing workshop presented their work in front of some 50 well-wishers at the New York City Alzheimer's Association Chapter oﬃce.

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As they faced the audience, they knew their thoughts could fail them or their tongues stumble over words they'd written. But they made the choice to confront Alzheimer's, not hide from it. By retrieving their past memories, and putting recollections to written word, they try to trump Alzheimer's or at least hold it at bay.

have shot, but he decided not to. The German surrendered. "I still think it was the right thing to do," Lesser concluded. Saal's other piece, "What Other People Notice," reﬂected on his loss of memory: forgetting friends, pretending, covering up, and losing his train of thought. He explained the accommodation he's made to his condition. "I've adopted a waiting stance," he noted, "knowing that sooner or later I'll click in." (Editor's note: Saal's complete piece will be published in the next issue of Perspectives).

Dr. Dienstag introduced the group with these words: "When my grandmother reached a certain age, she started giving her possessions away. She used to say, 'If I give it to you now, I can enjoy your having it.' As she neared the end of her life, my grandmother understood that if you give something away, you don't lose it. In the Lifelines writing group we have learned that this is also true of memories. The starting point of Lifelines was author De Lillo's observation that writing is a form of memory. If this is indeed true, then these papers in my hand are memories. When participants of this group write, they are remembering. When they read what they have written, they are transformed from people who forget, to people who remember."

Next came Charlotte Stein. This tiny white-haired lady was born in 1915 Mrs. Stein beamed at the audience and began to read about her very early years on the Lower East Side of New York and how she learned to walk. "I still love to walk," she announced proudly, and sat down to a hearty ovation. Later, Charlotte read "My Father's Hands," a delightful account of her father buying her candy (a forbidden treat) and cautioning her, "Don't tell mother." Charlotte's "Summer Memories" recalled swimming and strolling the boardwalk as a child at Coney Island.

Dienstag then introduced 75 year-old Saal Lesser, a handsome former national racquetball champion. A bit nervous, Lesser read in a ﬁrm yet halting voice about an experience he had in World War II when he met a young German soldier face-to-face. Both were holding guns, but neither ﬁred. Lesser could

Sarita Stein and Elizabeth Mudd could not be there to read their own work; Sarita had a cold and Elizabeth now lives in California. But the audience was able to hear Sarita's reminisces about growing up in Montpelier, Vermont and Elizabeth's recollection of

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being a child in the late 1920's and ﬁrst learning words.

When a goose falls out of formation, it suddenly feels the drag and resistance of trying to go forward alone and quickly gets back into formation to take advantage of the lifting power of the bird in front.

After the readings, Dr. Dienstag introduced Don De Lillo. "Writing," De Lillo observed, "is a concentrated form of thinking. People who put their ideas on paper see more clearly what is happening to them. Writing is memory enhancement. It is a way out of the deep silence. We need stories in order to live."

It takes an awful lot of energy to try to ﬂy down this road alone. Stay connected to others who share your common path. When the head goose gets tired it rotates back in the wing and another goose ﬂies point.

Indeed, when memory begins to unravel, a program like Lifeline may be a valuable tie to bind us to ourselves.

It is sensible to take turns doing demanding jobs be it with people or with geese ﬂying south.

Lessons Learned from Geese Finally, when a goose gets sick or is wounded and falls out of formation, two other geese fall out with that goose and follow it down to lend help and protection until that fallen goose is able to ﬂy again. Then they launch out again as a team to catch up with their group.

(Revised from the internet; author unknown) This Fall when you see geese heading south for the winter flying along in a V formation, you might consider what science has discovered as to why they fly that way. As each bird flaps its wings, it creates an uplift for the bird immediately following. By flying in V formation the whole flock adds at least 71% greater flying range than if each bird flew on its own.

If we have the sense of geese, we will stand by each other like that. HAPPY NEW YEAR!

Volume 5, Number 3: February-April, 2000

People who share a common direction and sense of community can get where they are going more quickly and easily because they are traveling on the thrust of one another.

Person-Centered Care: Honoring the Individual with Alzheimer's Dorothy Seman, coordinator of the Alzheimer's Family Care Center in

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Chicago, Illinois, and co-author of Rethinking Alzheimer's Care often quotes the physician Dr. William Osler who eloquently stated: "It's important to know what disease the person has, but it is more important to know what person the disease has." Interviewed for the book Speaking Our Minds, by Lisa Snyder, Betty, a retired social worker newly diagnosed with Alzheimer's expresses this same concept: "A person with Alzheimer's is more than just their diagnosis. Each person is a whole human being.....It's important to be both sympathetic and curious, and to have a real interest in discovery about who that person is. You have to really be willing to be present with the person who has Alzheimer's."

these principles of care are primarily being taught in long-term care settings, they are applicable to day-to-day interactions with each other as one lives and copes with this disease in the home and in the community.

These statements by a professional who cares for persons with Alzheimer's (AD) and also by a person diagnosed with the disease, speak to the heart of an important and deeply encouraging movement in the ﬁeld of Alzheimer's known as "person centered care." The term originated in England through the work of Tom Kitwood, author of Dementia Reconsidered who noted in his work, how often people are deﬁned by their disease, symptoms, and dis-abilities, rather than by the breadth of their life histories, experiences, and abilities. Person-centered care is a principle that honors the value of each unique individual and strives to treat that individual with dignity and respect throughout the course of AD. Although

Recognition Many individuals with AD express a feeling of being unrecognized by others. This may happen if the doctor talks to your caregiver and not to you, or if someone greets you and your spouse and asks him or her how you are doing instead of asking you. Recognition is the basic importance of having others respectfully acknowledge us.

There are ten basic principles in Kitwood's work that he describes as fundamental to developing quality relationships with persons with Alzheimer's. As you read these principles, you may want to consider whether they are present in your relationships with your friends, fellow support groups members, families, or in your relationships with persons who may assist you in day-to-day life and care:

Negotiation and Collaboration We all negotiate and collaborate day-to-day. We may talk about what activities we want to do or what we want to eat. Sometimes with AD the choices are more limited, or in extreme cases, they are taken away from you. Negotiation and collaboration mean that

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whenever and however possible, we work to ﬁnd ways for persons with AD to have a say in the decisions aﬀecting their lives. These principles mean that instead of doing something to someone else, we try to do things with that person's collaboration.

earlier, being "present" with the person with AD. Individuals with AD often do this for each other in support group settings, in social programs, or in residential care homes through a pat on the back, a kind gesture, or a quiet moment of companionship where words aren't necessary.

Play and Celebration Individuals with AD often discuss the value of a good sense of humor. The ability to play, laugh, and take part in an occasional prank, while often thought of as a childhood activity, is essential for adults, too. It brightens our lives and our relationships with others when we ﬁnd ways to be playful and spontaneous Celebrations (birthdays, weddings, a child's birth) are also a key part of life. Sometimes persons with AD feel isolated from life and the ability to share in these events in the home, in a social setting, or in the residential care home is essential and life-aﬃrming.

Validation We feel validated when we feel someone truly understands us. Since AD can be very confusing to the person experiencing it and to the person trying to help, respect and care for each others' feelings and experiences becomes even more important. "Timalation" Kitwood created this word to honor the importance of trying to use and communicate through all of our senses (sight, hearing, smell, touch, taste). AD can aﬀect our senses and sometimes makes it diﬃcult to interpret the world around us. "Timalation" means that others should try to communicate and create activity based on your best working senses. This sometimes helps to make up for sensory losses. Relaxation We all know the importance of unwinding and taking it easy. AD can be very stressful for the person diagnosed and those trying to help you. It's important to try to have some quiet time together - time that does not involve a lot of activity or demands.

Holding This principle describes being with a person in distress or as Betty said

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1999 Progress Report On Alzheimer's Disease Now Available

Facilitation Having AD means having to learn how to accept help. You can't go at this disease alone, and this principle means that sometimes others will need to "facilitate" to help you communicate or get something done. Facilitation is supportive without being overbearing. These ten principles may seem like common sense in establishing caring relationships with one another, and yet, they cannot be taken for granted. This philosophy of care is now being reinforced in AD programs and care homes throughout the world. One result is a growing movement towards much better care for persons with AD throughout the progression of the disease. Individuals with AD can be both the givers and receivers of care. How are these principles applied in your own life? Write to us and let us know!

In the last 10 years, major advances have been made in solving the puzzle of Alzheimer's disease (AD). Progress Report on Alzheimer's Disease, 1999, highlights these important scientiﬁc advances. The report summarizes our current understanding, based on years of research, of four puzzling aspects of AD: its main characteristics, causes; diagnosis; and treatment. Progress Report on Alzheimer's Disease, 1999, focuses on recent research conducted or supported by the National Institute on Aging (NIA) and eight other institutes at the National Institutes of Health (NIH). It includes new ﬁndings in several important areas: the etiology (cause) of AD; improving early diagnosis; developing drug treatments; improving support for caregivers; and building an AD research infrastructure. Progress Report on Alzheimer's Disease, 1999, concludes with a list of over 90 research references and a future outlook on AD research, including a description of the NIH Alzheimer's Disease Prevention Initiative.

References: "Rethinking Alzheimer's Care" by Sam Fazio, Dorothy Seman, and Jane Stansell. Health Professions Press, 1999 "Dementia Reconsidered" by Tom Kitwood, Open University Press, 1997 "Speaking Our Minds - Personal Reﬂections from Individuals with Alzheimer's" by Lisa Snyder. W.H Freeman, 1999

MAILBOX Dear Editor, I truly enjoy reading Perspectives, and would like to share something that happened to me recently. Because of my forgetfulness, sometimes I put things in a particular place where I will

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be sure to ﬁnd it when I need it. Usually in plain sight, where I will be reminded. My son gave me an audiocassette of songs I especially like. We were in his van when he gave me the tape. I remembered putting it in my purse. The next day, I went to get the tape out of my purse and it wasn't there. I looked in several diﬀerent places that I thought I might have put it for safekeeping. It was nowhere to be found.

diﬃcult and why. I don't have those responsibilities now. If I did, I would have the same problems I did then. I should have stopped sooner. I suppose this is a lesson for persons with early-stage Alzheimer's. It was a gradual thing. It takes awhile to realize, acknowledge, and accept it. It helps if you have someone along side of you to learn along with you and make the transition together.

I went over it again in my mind. I did remember opening my purse when I got home and I saw it in my purse, but I don't remember what happened after that. Of course, then I started doubting everything. Maybe I never put it in my purse and imagined seeing it.

Alzheimer's is a disease unlike some others in that you can't be told "this is what you will do." There are no rules or guidelines. No across-the-board suggestions. It is individual and requires perseverance. I believe we will do better with a sense of humor and an optimistic outlook - to ﬁnd something positive in life's inconveniences.

About one week later, I was doing some mending. I opened the sewing box and inside was my cassette tape! My sewing box had been next to my purse, and I guess I put the tape in it. I don't remember doing it.

I am grateful that we are able to share our ideas and experiences in the Perspectives newsletter. Sincerely, Linda Raymer Clinton Township, Michigan

I guess the moral of the story is that if we misplace something, and it's important enough, it will turn up eventually. The bright side is that I experience a lot of pleasant surprises. Recently I read the ﬁrst journal that I wrote in January, 1995, two months after being diagnosed with Alzheimer's. I was still shopping, cooking, and driving - all the usual responsibilities. I was doing all of these things knowing I had Alzheimer's - knowing that it was

Dear Lisa, I hope all is well with you. I don't write much anymore or talk on the phone. I'm not sure why -- maybe it is just plain tiring. Still, I try when I can. Enclosed is one of the last few things I have written. I hope you enjoy it. Thank you for being such a great help to so many in need.

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Sincerely, Tim Brennan

By asking, just this -Do you remember?

Editor's note: We are very grateful to Tim for his continued eﬀorts to write and share with us all. The following is one of his more recent pieces that he included in his correspondence:

Dear Editor, I shared the article "Thoughts From an Early-Stage Alzheimer's Support Group" from the Nov-Jan 2000 issue of Perspectives with the participants of the Alzheimer's Association, Northern New Jersey Chapter's A.D.A.P.T.S. (Alzheimer's Disease Awareness, Peer Training, and Support) group today at our meeting. After hearing and discussing their personal thoughts on the section "Advice for those who are in the early stages of Alzheimer's disease," the participants suggested two other lessons that they have learned and that they would like to share with others.

Do You Remember? By Tim Brennan Do you remember The rides at the fair? Do you remember When spring was in the air? Do you remember The smell of fresh mown hay? Do you remember The sunsets by the bay? Do you remember How love between us grew? Do you remember When one became two? Do you remember The laughter and the smiles? Do you remember Life before the current trials?

• First, go and enjoy life. Don't wait until tomorrow. Continue to do what you are still able to do. • Second, remember that you are still loved by many people -- your spouse, children, grandchildren, great grandchildren, family, and friends. These people know the great person that you are and will always be in your corner.

Do you remember? For an Alzheimer's process Is causing memory losses And recalling the past Is leaving mind's grasp. So, I simply persist

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The Meaning of Support Groups "We share our strengths, hopes, and experiences with each other. You're not alone. Birds of a feather flock together!" -----Burt The more recent ability of the medical community to diagnose Alzheimer's disease earlier on in its course has meant that many people living with the disease are becoming more proactive in finding ways to care for their physical and emotional well-being. One dimension of this self-care can be seen in the growing interest in support groups for diagnosed persons. These groups have been growing both nationally and internationally, and have become a source of information, sharing, and community for many persons with Alzheimer's. Although the structure and format of groups may vary, there are some themes that emerge when participants discuss their experiences with these groups. A common experience, as expressed above by Burt, is one of helping to keep each other afloat in circumstances that be quite frightening or alienating. As another participant stated: "We're all in the same boat, but we're not drowning! It is also common for persons with Alzheimer's to have times when they feel self-conscious about the changes in their memory or abilities. A support group can provide a sense of safety and an environment where you know others

understand your condition: "I feel very free to say anything having to do with the disease. The group is a freeing kind of place to be. It's a good shared experience."" groups may vary, there are some themes that emerge when participants discuss their experiences with these groups. Members of the Early Stage Alzheimer's Support Group and the Spousal Caregiver Group that meet at the Long Island Alzheimer's Foundation in Port Washington, New York, were asked to express their feelings of what their support group means to them. The following is the collection of their answers:

Others feel increased self-esteem when they can help each other and honor each others' strengths and abilities. Support groups can be a place where participants share coping strategies, learn research updates, help each other through rough times, and celebrate each others' accomplishments: "It is so helpful to see the same people here who are willing to express themselves and say things that under other circumstances, they may be embarrassed to say. It helps to build our sense of signiﬁcance."

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For some, Alzheimer's disease can be a lonely experience. Some old friendships may fade away and sometimes it can be hard to ﬁnd community. Support group members frequently express the value of the new friendships formed in the group setting. Sometimes these bonds can extend outside the group allowing diagnosed individuals and their families to socialize in other settings together: "In the beginning, I had no idea what this was going to be, but it didn't take long to know there would be a lot of nice people here."

by Saal Lesser was written during his participation in the group. We thank Saal and Dr. Dienstag for permission to reprint this message in Perspectives. Most people do not see me as I have become since my experience as an Alzheimer's frater. Yes, we are a fraternity and sorority of handicapped people on an inevitable slide to nirvana. Most people (I think) just accept my peculiarities without a thought. When I forget a child's birthday or receive a telephone call from a friend who I cannot place immediately, I know that sooner or later I'll remember who I'm talking to and proceed as though there were never was a lapse. It's somehow fraudulent on my part, but I don't want to expose me all of me at once. I know that people would like to see the best of my abilities, but there are times that I just cannot produce. I can proceed through most of my working days by just waiting for the right time to nod and pretend that I've become cogent. It's a sham, but I also know that most people would like to believe that I am really the person I used to be.

A growing number of communities provide support groups for individuals with Alzheimer's, but many regions still do not have these services. Call your local chapter of the Alzheimer's Association to see if there is a group in your community. If there is not a group available, you might ask that one be started! For information on developing a support group, a helpful reference is "Developing Support Groups for Individuals with Early-Stage Alzheimer's" by Robyn Yale

I think I know what I want to say during discussions, but I ﬁnd myself wandering and lose the train of thought, only to pick up on something somebody else said that I might be able to accept as part of the discussion. I've adopted a waiting stance knowing full well that

What Other People Notice By Saal Lesser Editor's note: Last issue we reported on "Lifelines", the writing workshop for individuals with Alzheimer's conducted by Alan Dienstag, Ph.D. and author Don DeLillo in New York. The following piece

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sooner or later I will rally, "click in" or say the right word that others expect.

it brings about in that person you know so well. If you accept the disease, you can help your loved one accept it rather than forcing him or her to go through a period of listening to how they couldn’t possibly have Alzheimer’s because they “act so normal” or “look so good.” If you clearly understand the disease, you will realize that in the early stages many things are still normal and may remain so for awhile. Just let your loved one know you accept the disease and will always love them no matter what it does to them, and this will help with the fear they are feeling. So, along with acceptance, love is a key ingredient. It isn’t just normal for the diagnosed person to grieve, but you will go through periods of grieving yourself when it hits home just what the next years will bring and how you will miss the person you now know. A wonderful balm for grieving is the comfort and love of family and friends. There are informative classes and literature on the “how to” of being a caregiver, but hidden between the lines is our request that you understand that many of the things we say and do now are out of our control. Sometimes angry behavior slips out before we know what has happened. Or, we break in on sentences to ask questions not out of rudeness, but because if we don’t ask immediately, the question will be forgotten and the possible knowledge to be gained will be lost to us.

Volume 5, Number 4: May-August, 2000 A Letter to Caregivers By Carol LaBarge “What we want most, next to love, is respect and an understanding that, in many instances, our behavior is dictated by the disease, not by our own choices.” It’s almost two years since my diagnosis and I know the day is getting closer to needing a caregiver. I live alone so my vision of what’s needed in a caregiver isn’t clouded by the personality adjustments required when a loved one takes over even a portion of your care and your life. I’ve observed others with the disease and the relationships they have with their caregivers and also had a chance to get acquainted with the new diagnosed me. I see clearly that caregiving for someone with early-stage Alzheimer’s is completely diﬀerent than for one further down the road, yet there is a common thread. As I see it the key ingredient in the early stage is acceptance. How can you oﬀer care, or even help, if you haven’t accepted what is happening to the person (who is probably a loved one, spouse, or parent)? The kindest thing you can do is educate yourself to better understand the disease and the changes

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I haven’t traveled a great distance down the Alzheimer’s road, but I have seen enough to know that love is a key ingredient in caregiving. Tim Brennan (who also has Alzheimer’s disease) wrote in his essay A Message of Love, “The last thing a person with Alzheimer’s ever loses is love. Our memories may be gone. Intellect and logic may have diminished. We may have forgotten your name and where we are or what we are doing. But we remember love.” Maybe we were a great homemaker and now burn a pan or can’t accomplish shopping; maybe an accountant and now can’t balance a checkbook; or an entrepreneur and now can’t ﬁgure out how to order something over the phone. If this is frustrating to you, imagine what it is to us. What we want most, next to love, is respect and an understanding that, in many instances, our behavior is dictated by the disease, not by our own choices.

As a caregiver, I hope that you can give and receive love without reservation, and that this love will be a beacon that lights the darkest Alzheimer’s night. Editor’s note: Many caregivers ﬁnd support groups to be an invaluable resource in learning about Alzheimer’s and how best to help their loved one. The Alzheimer’s Association sponsors caregiver groups all around the country and is a good resource for locating support. Also, caregivers who have access to the internet can subscribe to an online caregiver discussion and support group. This group is sponsored by Washington University in St. Louis, Missouri and has been a valuable resource for many caregivers.

I belong to a support group for individuals with Alzheimer’s. I’ve listened to a support group member talk about his wife with such love because of her loving treatment of him. I’ve visited a nursing home and seen the lonely one who doesn’t get much chance to be loved, and I’ve seen the sadness when the disease isn’t understood.

MAILBOX Dear Editor, Recently I visited my daughter and son-in-law.The conversation turned to dealing with diﬃcult people at work, and I was surprised to observe myself having a complex extended

“Sometimes angry behavior slips out before we know what has happened.”

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conversation with more than one person very much like I used to years ago before Alzheimer’s. The explanation was the I used to teach classes in the Sociology of Conﬂict, and in this area my long-term memory was richly stocked. But I could not only remember the principles, but apply them on the spot to the situations that came up. I’d read about the way good cardplayers who develop Alzheimer’s can sometimes continue to play and win well into the disease. I think my experience was similar.

in the more distant past) is often fairly well-preserved in persons with Alzheimer’s disease. But short-term memory (the ability to remember new information or experiences) is much more profoundly aﬀected and loss of short term memory is one of the primary symptoms of Alzheimer’s. As such, it can be confusing to both those diagnosed and to family members when memory ability seems to so good in some areas and so poor in others.

In The News: Exelon Finally Approved! After a long delay, the Food and Drug Administration (FDA) has ﬁnally approved Exelon, a medication to treat Alzheimer’s. Exelon works like Cognex and Aricept, by limiting the breakdown of the brain chemical (acetylcholine) that helps with memory. Exelon is not a cure for Alzheimer’s, but it may help some individuals maintain memory or concentration abilities for a bit longer.

What that experience felt like was being on a furlough from prison. It was vaguely comparable to the normal experience of being depressed and having the sun break through the clouds for a while, triggered by some unexpected cheerful event. It occurs to me that one reason friends and relatives can be in denial that their loved one has Alzheimer’s is because conversations naturally and frequently turn to areas where long-term memory is rich, and this gives others an unrealistic picture of the patient’s general level of functioning.

To ﬁnd out more about new drugs that are under investigation for Alzheimer’s disease and other illnesses, the National Institutes of Health (NIH) has launched a new web site at http://clinicaltrials.gov. This web site provides patients and families with information about the location of drug studies, their design and purpose, criteria for participation and in many cases, further information about the disease and treatment under study. The website is completely conﬁdential.

Sincerely, Morris Friedell Livingston, Montana Editor’s note: Morris brings up a good point. Long-term memory (the ability to remember things well-learned or experienced

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People who use it will not be contacted by the sponsors of drug studies or by anyone else. The site provides a valuable service to those who want to stay updated on drug developments or who are interested in participating in research.

disruptive dreams or nightmares when starting on Aricept. Taking the medicine in the morning instead of in the evening usually remedies this problem. Sometimes when I can’t remember something, I just take a break from it all and try to give my mind a rest. Sometimes what I wanted to remember comes back to me, but sometimes it doesn’t! Alzheimer’s can be a really tiring experience. --Louise

Brainstorming We asked a number of individuals with Alzheimer’s: Do you have any particular memory aids that you use? Here are some of the answers: We have a long house and sometimes if I start out in the bedroom and go all the way across the house to the kitchen, by the time I get there I’ve forgotten what it was I was going to do! So I retrace my steps and start back in the bedroom again. Then often I can remember what I was going to do in the kitchen and I can go do it the second time. --Ken

I live alone and sometimes I wake up in the morning like a blank slate. I have no idea what day it is and what I’m supposed to be doing and there is no one there to tell me! So, I get out of bed and immediately get my calendar that lists all of my appointments and reminders. That has worked very well so far. --Lynne I use a tape recorder to remember things. I can talk into it and then play it back. --Pat

Sometimes I’ll start a sentence and forget what it is I was going to say half way through. But if someone prompts me by repeating the part of the sentence I’ve already said, then often I can pick up my train of thought and ﬁnish the sentence. --Marie

I carry 3x5 cards in my shirt pocket and write notes on them. Then I can pull them out and refer back to them. I’ve done this all my life, so it’s a well-learned habit! --Beth

I’m on Aricept and that helps a lot. I take it in the morning to avoid nightmares. --Jim

I have a wife who helps me and I would be lost without her. She remembers the things that I don’t remember. --John

Editor’s note: We have heard from a few people who have had very vivid and

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monitoring Congressional action concerning future allocation of funds. Upon hearing her testimony, members of the University of California, San Diego’s Alzheimer’s Disease Research Center’s Support Group for Individuals with Alzheimer’s decided to write a letter to Congress to aﬃrm Ms. Reagan’s testimony, and to advocate further on behalf of diagnosed individuals and their families. The following letter was written by support group members over the course of two support group meetings. Group members are now awaiting a reply.

I keep important information in my wallet - things I don't want to forget like my address, phone number, medication, and things like that. --Grace My wife is ill right now, and she wanted me to pick up some bread from the store. But last time I went, I ended up in the wrong store and got the wrong item. This time she gave me a section of the wrapper from the bread that had both the bread name and the specialty store. That helped a lot. I went to the wrong store again at ﬁrst, but then when I pulled out the wrapper, I realized the problem and went to the right store and got the right bread! --Kirk

We commend members of the support group for their eﬀorts and powerful message and with their permission and enthusiasm, share the letter with our readers. April 10, 2000 Oﬃce of Senator Arlen Specter Chairman, Senate Subcommittee on Labor and Health United States Senate Washington, DC 20510 Dear Senator Spector,

Support Group Members Write to Congress

We write to you as members of a support group for persons with Alzheimer’s disease and related dementias that meets at the University of California, San Diego’s Alzheimer’s Disease Research Center. We recently heard, and appreciated, the testimony Maureen Reagan gave to the Subcommittee on Labor, Health and

Editor’s note: In March, Maureen Reagan, daughter of President Reagan who is now in the advanced stages of Alzheimer’s, testified before the United States Congress concerning the need for more funding to find effective treatments and a cure for Alzheimer’s disease. Her testimony was well-received in Congress, and we will be

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Human Services, and Education and are sending this letter in support of her advocacy on behalf of individuals and families facing Alzheimer’s.

make ourselves known.” ----Betty Reichert As we discussed writing this letter, some of us had our own speciﬁc messages to convey to members of Congress:

We are a varied group ranging in age from 38 to 82 and meet weekly with our facilitators to discuss the eﬀects of the disease on our lives and to share strategies for coping. As one of our group members, Lola Crosswhite said recently:

“I was a furniture maker and was forced to close my furniture shop when my wife discovered I was becoming more forgetful. It was also a tremendous sacriﬁce to me to give up my driver’s license.” ----Jorgen Madsen

“When I tell people I have Alzheimer’s they say, “Well, you don’t act like it. You seem real normal.”

“I used to play bridge very well, and now I’ve had to give it up. I never win anymore and we’re having to ﬁnd friends who understand. When I tell people I have Alzheimer’s, they don’t pay much attention. Please pay attention and give more funding to research and public and professional awareness.” ----Dot Clark

As Lola’s message testiﬁes, people believe that Alzheimer’s patients have little ability to deal with the world in which they live, but that is not true. We still have abilities, strengths, and ideas to share with others newly struggling with similar physical and mental symptoms.

“I was an editor for the U.S. Foreign Service Magazine. I can’t spell anymore. I make mistakes all the time. I can’t remember what I want to write or how I’m going to do it.” ----Bill McCurdy “I was a sales manager for an information company and was forced to retire. I lost my ability to focus and to multi-task. We need programs for health care professionals to be more sensitive to the diagnosis and treatment of the disease. Many patients and families are not getting any support from their family doctors and have to

This disease has impact far beyond the often unmet needs of the patient. Spouses, family members, and friends are often frustrated and troubled by their own lack of understanding as well as the lack of understanding among the community around them. “There has to be an organized approach to tackling Alzheimer’s. We are a small group of individuals with the disease, but we’re organized and we want to

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search and search to ﬁnd the right help.” -----Philip Hutchins

can occur as a result of a fall. Falls can happen in the home or out in the community. They can be caused by tripping, slipping on wet or uneven surfaces, losing one’s balance, or misjudging the height of a curb or stair. Although some symptoms of AD can contribute to higher risk of falling, there are ways to take precautions that can reduce risk of an accident.

“Alzheimer’s disease is so costly and most people can’t get the best care. They can get some, but need a lot more help.” -----Betty Jones “Keep on....We’re trying to keep on and we want you to, too.”---Normand Gagne

Preventing Falls: Reducing Risk for Individuals with Alzheimer’s

Alzheimer’s can effect your vision by altering your ability to judge both depth and distance. These problems are often referred to as “visual-spatial” difficulties because they affect the way you view spaces around you. Something may look closer or farther away, or taller or shorter in height than it really is. Also, some persons with AD have additional symptoms more associated with Parkinson’s disease. These can include a shuffling walk and some inflexibility, also called “rigidity.” Others with AD can get a bit restless and feel the need to move about or stay on the go. This restlessness can affect movement and concentration, and increase risk for falls or accidents. Or because of memory loss challenges, you may be concentrating so hard on locating an item or a place, that you are less attentive to objects or uneven surfaces that may be in your p

Many studies suggest that individuals with Alzheimer’s disease (AD) are at an increased risk for injury. Often these injuries, such as cuts and bruises, sprains, and fractured or broken bones,

It is important to remember that AD aﬀ each person a little diﬀerently, and y may never experience these symptoms. It is helpful, however, to follow some

We will be watching closely as Congress addresses Alzheimer’s funding in the future. We are only a few voices in over 4 million citizens living with this disease, but every voice counts! Our hearts are with President Reagan and his family. We close with a poignant quote: “I was a school teacher and painter and began to have trouble coordinating my hands. Remember, we’re people just like you and everyone else. This disease could just as easily happen to you.” -----Glen Bell Sincerely, Members of the UCSD Alzheimer’s Support Group

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basic principles of safety that can reduce your risk of falling. In the home: Use night-lights in the bathroom, bedroom, and hallways. Install grab rails in the shower and by the toilet. Use rubber bath mats with suction cups to hold them in place. Remove throw rugs that are easily tripped on. Kee and electrical cords and excess clutter out of pathways. Store frequently used objects within reach. Avoid using step stools or chairs to reach things.

noise and stimulus can eﬀect both concentration and judgement and increase risk for accidents. Exercise regularly to maintain muscle ﬂexibility and strength.

Make sure you let someone know if you have fallen! Sometimes we are not even aware of an injury need be evaluated by a nurse or doctor.

In the community: Wear sturdy non-slip, low-heeled shoes that ﬁt snugly. Consider using a cane for balance. A cane is also helpful to judge distances or heights of curbs and stairs. Avoid walking alone on busy streets. Memory loss combined with too much

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VOLUME 6

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Volume 6, Number 1: August – October, 2000 A Personal View of Living with Early Onset Alzheimer’s by Jan Mina Phillips We Learn From You National Alzheimer’s Association Develops New Website: “People with Alzheimer’s Disease” World Alzheimer’s Congress: Highlights from the International Meeting Healthy Habits: Avoiding Dehydration Volume 6, Number 2: November, 2000 – January, 2001 A Commentary for Patients, Caregivers, and Others Dealing with Alzheimer’s and Related Diseases by Leslie E. Dennis, Ph.D. Hopeful Research Investigations for the New Year An Interview with Anne Today by Tim Brennan A Tip for the Winter Months Volume 6, Number 3: February – April, 2001 Exercise and Alzheimer’s

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Working Towards a Healthy Mind and Body What Do We Value About Our Support Group? A New Resource: Exercise: A Guide from the National Institute on Aging To Drive or Not to Drive? Stem Cells In the News Volume 6, Number 4: May–July, 2001 Capturing Memories: Recording your Recollections for Yourself and Others New Online Chat Room for People with Memory Loss New Resource: 2000 Progress Report on Alzheimer’s Now Available Essays on Alzheimer’s Early Stage Support Group: My First Step in the Right Direction? By E.L. Gorman Reducing Dread and Marginalization by Leslie E. Dennis, Ph.D. Spotlight on a Program: The Adult Activities Center Costa Mesa, California

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would ask that we be viewed in an optimistic and not a fatalistic light.”

Volume 6, Number 1: August – October, 2000 A Personal View of Living with Early Onset Alzheimer’s By Jan Mina Phillips Alzheimer’s disease (AD) changes each of us very differently because of the brain cells it attacks. Each person is different and yet the outcome will probably be the same; it is just the path that differs. I think sometimes many of us try harder to do more and to be seen and recognized as still important. We are so frightened about having AD, and since we know the consequences, we strive to be recognized and validated as alive, rational, and productive human beings. Some people in our lives choose to ignore or to hide from AD and thereby deny its existence. The reality is that when diagnosed with Alzheimer’s, we are immediately discounted; our views are discredited because of the disease.

I choose to speak openly about having AD for many reasons. For one, many of my peers are unable to speak anymore. Second, the drugs used for the treatment of AD have little or no eﬀect if they are started later in the disease progression. Also, I feel a need to put a new face to AD -- to let people know that it is not an “old timer’s disease.” Alzheimer’s strikes many in their 40’s and 50’s and some even

younger. I want people to realize that this is not a disease of hopelessness. Not long ago, I was invited to attend an AD conference, not to speak this time, just to attend. As usual there were the ever-present exhibitors and professionals with displays and other oﬀerings. As I made my way around the room perusing and stopping at each

“If I could choose, as a member of the Alzheimer’s society, how I wish we were seen by those in healthcare, I

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display, people were friendly and we had great discussions. Of course they wanted to know my affiliation -- which company or organization I was representing. Invariably when I disclosed that I was the patient -- the one diagnosed with Alzheimer’s disease -- they became stuttering messes! These professionals offer and advertise patient services, products, and special homes. They offer information about caregiver resources and supports, but they can’t figure out how to converse with a patient! Once I tell people that I have been diagnosed with AD, even if we have been having a most engaging, wonderful exchange, the conversation ends abruptly. At times it is amusing, and always disconcerting, because people like these professionals gather together specifically for AD awareness and yet they themselves are at a loss for how to act with one who lives with the illness. I sometimes wonder how can I expect more from the general populace. I could choose not to identify my diagnosis, but what is the value in that? My hope is that maybe people will see that AD is not just a product, not just a service, not just a means to make a dollar, but that AD is real. I am alive; I am a human being. One of the hardest things about being diagnosed early in life is that I have had time to ferret out knowledge about the disease and to understand its progression. And I have been involved with peers and caregivers who are farther down the road with this disease. It is hard to

witness and to experience the reality that once you are diagnosed, you are discounted and others act as if you are invisible during most conversations. It is as if we are not there! Another thing, the guilt that is heaped upon the patient is enormous – not intentionally perhaps, but it is there. Through no fault of our own, we have AD which will cause untold misery for our caregivers. More than anything, this picture of misery for your loved ones is hammered into you as you seek advice from health care and legal professionals. It seems ironic that because we exist with a certain diagnosis our caregivers get to join organizations like the Alzheimer’s Association where they receive support and counseling. There is much less support or sympathy for what will be my losses with a life changed by AD. Where is the dignity in a life that after diagnosis has no value? In all subsequent conversations with professionals only my caregiver’s needs were given any validation through the support, counseling, and respite oﬀered. There is no question that those days will come when my family will need the support, but I am not incompetent just because a diagnosis was made. “Now we need to prepare the road for those living with Alzheimer’s.” If I could choose, as a member of the AD and dementia society, how I wish we were seen by those in health care, I

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would ask that we be viewed in an optimistic and not a fatalistic light. Now with the extremely rapid changes that are coming with new medicines, gene mapping of chromosomes, cell rejuvenation therapy, and so on, AD may soon be seen as a manageable and treatable disease. Yes, I know that there is still no cure, but there is no cure for diabetes, high blood pressure, or liver dysfunction either and yet there are courses of treatment that will control and manage those diseases to a degree. Perhaps this approach will take the stigma away from the disease and get more people to come forward and to accept and seek diagnosis at a younger age when drugs might be more eﬀective. I am a hopeful example of the new generation of ﬁrst time Aricept users. For three years now my annual testing has been held basically steady, albeit slight slipping in some areas. For the most part though, the worsening of my symptoms has been forestalled. And perhaps if forestalled long enough, there might come a time when there might be a halt to this monster’s progression with the rapid advancements we are now seeing. We have come to accept the death of a person with AD as matter of fact, and have prepared the road well with modern up-to-date facilities for persons with AD, caregiver resources, and respite. Now we need to prepare the road for those living with Alzheimer’s. People living with Alzheimer’s need such things as patient support, crisis

intervention, and family, marriage, and legal counseling. These are the needs of people living with AD. We need to maintain our dignity as viable, productive human beings, not life’s discard because of the disease.

Editor’s note: Jan has collaborated with nurses at Sunnybrook and Women’s College Health Sciences Centre in Toronto, Ontario, Canada, to have this essay and some speciﬁc care recommendations printed in a brochure for distribution to care providers.

We Learn From You Editor’s note: The following column is reprinted with permission from the Long Island Alzheimer’s Foundation (LIAF) newsletter, New York. Recently two of our Early Stage Support Group members accompanied LIAF President and CEO Debbie Honorof to speak before a class at Touro College. They spoke about their feelings and

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experiences, and how their lives have changed since being diagnosed with Alzheimer’s. One of the students in the audience, obviously moved by what the support group members said, wrote this thoughtful and appreciative poem “We Learn From You”, while she was listening, and handed it to them at the end of the presentation.

To add to the knowledge, And to make your thoughts heard. To be brave and to educate, You have powerful words! Thank you!

MAILBOX

If I should forget something today, I’ll not make a huge deal. I’ll leave my fate up to the maker, That spins the greater wheel.

Dear Editor, Just a quick note to say I ﬁnd your newsletter very interesting. Working with people with dementia, I come across very little which is actually written by people with dementia for people with dementia.

I’ll sit and drink in sunshine, and remember I can talk. I’ll remember what I can still so, Through paths I may walk.

I look forward to every issue and ﬁnd every one enlightening and thought provoking. Thank you very much, and keep up the good work.

And I will admit with a swallow, admit that I may fall. Remember I am strong, When I resort to a crawl.

Best regards, Debbie Roth Alzheimer’s Society North Shields, England

Life will keep turning, And I will not give up the ﬁght. I will wait for the sun, When I have a long night.

Dear Editor, I keep past issues of Perspectives handy and often use its informative articles to get support group discussions going. We especially enjoy words that oﬀer encouragement and come from a positive point of view. You’ve made a great contribution to the people who live with early Alzheimer’s with your ﬁne publication.

Sometimes we have no control, and it is scary and cold. It is then we must be strongest, Most willful and bold. It is easiest to quit, But our hands must outreach. It is now we’ve been given, The gift to best teach.

Marilyn Trabert Director The DRC Club

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Walnut Creek, California

period of treatment resistant depression and feeling “something is wrong with my mind”, my psychiatrist referred me for neuropsychological testing. She came back with a rule-out diagnosis of early-onset, early stage Alzheimer’s. She referred me to the Alzheimer’s Association, etc. An MRI was done, revealing only mild evidence of a small stroke at some time. The neurologist did not think I have Alzheimer’s (“you’re sharp as a tack”). My psychiatrist started me on Aricept and 1000 mg of Vitamin E, but although he has worked with the neuropsychologist for his testing for eight years, he does not say he agrees with the results of my testing. He says “time will tell” and we’ll retest in 6-12 months to see if we know more then. I’m going to opt for the longer time span hoping for a more deﬁnitive result. The uncertainty is agonizing.

Dear Editor, The latest issue of Perspectives was especially good. The article by Carol La Barge called “A Letter to Caregivers” was written so well and contained many suggestions for caregivers. I also appreciated the depth of the article about preventing falls and so did my wife Peggy. She thought so highly of the piece that she went out and bought a cane for me to use. Since I started using it I am not falling as much as earlier on. If you think no harm could come from Carol LaBarge and I sending email back and forth, please provide her with my address. I don’t know if you usually pass on addresses, but she is very intelligent and perceptive of her situation and how it may be looked at by others. It would be nice to write to her. Thank you once again for sending me Perspectives. I learn from each issue.

I wonder if others have gone through this uncertainty and disagreement by medical providers in the early stages and at what point a clear diagnosis could be made. I am doing better cognitively, but don’t know if it’s the result of the Aricept and Vitamin E or that maybe it was a transient condition. I asked about discontinuing the Aricept to test it, but the psychiatrist recommended not stopping it because it is not always eﬀective if stopped and restarted.

Regards, Tim Brennan Sterling Heights, Michigan Dear Editor, Just a note to say I enjoy your newsletter and ﬁnd it helpful. I certainly relate to it, but feel like an imposter. I am in limbo as far as a deﬁnitive diagnosis. I am 60 years old and work at an adolescent corrections facility as a nurse in the clinic. Last summer after a long

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I would appreciate input and information from your other readers if they have had similar experiences. Thank you again for your newsletter.

It is not unusual to hear a person with Alzheimer’s speak about the lack of information and literature available to the person with the disease. Most resources are directed to families and professionals and although valuable in content, they do not necessarily speak to the needs, questions, and experiences of the person diagnosed. The National Alzheimer’s Association is making some encouraging headway is filling this significant gap, and its newly revised web site is one example. Located at http://www.alz.org, the web site opens with a choice of categories including the newest addition called “People with Alzheimer’s Disease.” This site is dedicated to addressing the concerns of those diagnosed: “A diagnosis of Alzheimer’s disease may be the last thing you wanted to hear. But the first thing you should know is that you are not alone. There is a lot of help and support available, and your visit to our Web site is a great place to learn about the disease and what you can expect as it progresses. Inside, you will find tips and resources to increase your comfort, allow you to remain active, and help you cope. But more important, we hope you will find the inspiration to make your years ahead the best they can be.”

Sincerely yours, Virginia Hunt Editor’s note: It is not uncommon for doctors to be cautious about making a diagnosis of Alzheimer’s until they can monitor a person’s mild symptoms over time. The diagnosis requires changes in thinking as well as changes in daily functioning. Some doctors use the category “mild cognitive impairment” to describe those individuals who do not meet full criteria for Alzheimer’s. They then reevaluate the person every 6-12 months to determine changes that could indicate a progressive disease. Virginia is wise to participate in an annual follow-up to better determine the causes of her memory changes.

National Alzheimer’s Association Develops New Website: “People with Alzheimer’s Disease”

The web site is organized into diﬀerent categories including: understanding Alzheimer’s; living with Alzheimer’s; answers to frequently asked questions; ask an Alzheimer’s expert; programs

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and resources; and share your experience. The opportunities for sharing experiences is a wonderful inclusion to the web site and oﬀers ways to submit artwork, poetry, short stories, or essays online. If you do not have access to the internet, call your local Alzheimer’s Association and ask for a print out of the web site.

their families. Researchers are engaging in a world-wide effort to ward off this future epidemic as well as to treat those already living with Alzheimer’s. An exciting development that could address both prevention and treatment is the continued research into an Alzheimer’s vaccine. In preliminary tests with mice, the vaccine currently under investigation dramatically decreased the amount of amyloid protein deposited in the brain. This protein is thought by many to be a primary cause of AD. Researchers have begun testing the safety of the vaccine in humans and hope by next year to proceed with studies to measure the vaccine’s effectiveness in persons with the disease. Spurred by these World Alzheimer’s Congress events, President Clinton announced that the National Institutes of Health will spend 50 million dollars over the next five years to accelerate this vaccine research. Researchers also discussed results from studies of the drug Memantine. Approved in Germany and studied in the USA, the drug seems to slow decline in functioning and thinking in persons with advanced AD. The drug is awaiting approval from the Food and Drug Administration for use in the USA.

World Alzheimer’s Congress: Highlights from the International Meeting This past July, over 5000 participants joined together in Washington DC, USA, for the World Alzheimer’s Congress. This conference brought together researchers and care providers from around the world to share their knowledge and discoveries in the biology of Alzheimer’s disease (AD); hopeful new treatments; innovative ideas for care; and cross-cultural comparisons of the availability of services and treatment to those living with the disease. Researchers forewarned of a pending world-wide Alzheimer’s epidemic as baby boomers come into their retirement years and face increased risk of AD. More than 11 million of the 18 million people with dementia worldwide live in developing countries. These countries (China and India for example) suﬀer from extremely limited funds to acquire basic medicines, programs, and care for individuals and

The World Alzheimer’s Congress also devoted focused attention to issues surrounding the earlier stages of AD. In a day-long intensive, professionals

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working in program development and support services, and a panel of individuals with AD and their family members discussed numerous issues facing those with more mild impairment. Panel members discussed diﬃculties in obtaining an accurate and compassionate diagnosis; the importance of staying engaged in meaningful activity; the challenges of the disease for those diagnosed and their families; and the great value in approaching life one day at a time. Professional presenters from around the world discussed various models of support groups for diagnosed persons and their families, as well as an innovative program that pairs medical students with an early-stage Alzheimer’s “buddy” so students can put a human face to the disease and learn more sensitive methods of practice.

about going and wonder if you have any tips. A. Large gatherings can be both fun and stressful for anyone, but the experience of memory loss can make them more challenging. Some things to consider: ● Have you told extended family members about Alzheimer’s? People are often much more understanding of lapses in memory when it is due to the disease. If you have not told family beforehand, you may experience the double stress of trying to pretend everything is ﬁne when it isn’t. Let people know your problem, and chances are you’ll experience less embarrassment if you forget. ● Try to see the guest list before attending the wedding. You can review this list repeatedly in the weeks before the event. It is particularly helpful if you have photographs to match with names. ● Talk strategy with whomever will accompany you to the event. If you approach someone at the wedding together, your companion can make sure to greet the person by name and make a few introductory remarks to prompt your memory. ● Try to get rest before the event and limit alcohol consumption during the celebration. Both fatigue and alcohol cloud thinking. ● If there is music, take a break from any pressures of conversation, get

Recommendations presented during this intensive included: the need for more AD literature written for the person with the disease; the development of more meaningful early-stage community programs; and the inclusion of the person with AD in political advocacy, research, and program development.

Questions and Answers Q. We have a large family wedding to attend this summer and I know I won’t remember who everyone is. I’m also horrible with names. I’m very nervous

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out on the dance ﬂoor, and have a good time!

Eat plenty of fresh fruits and vegetables daily. Avoid coffee, black tea, or colas. They are diuretics (substances that lead to increased urination). If you drink these beverages, also have a glass of water to compensate for the risk of fluid loss. Each day in the morning, fill a quart-sized water bottle with water or fruit juice. Drink from it throughout the day. If you have forgotten whether you have had enough fluids at the end of the day, check the bottle. If it’s empty, that’s a good sign you’re on the right track. If it’s still full, drink up! Avoid going outside :in the hottest part of the day. If you do, take water with you and drink fluids during your outing.

Healthy Habits: Avoiding Dehydration The months of August and September can be dangerously warm in some regions of the world. Heat coupled with high humidity can place us at serious risk for dehydration. Dehydration can increase confusion, disorientation, and memory problems in individuals with Alzheimer’s. Due to the memory problems already associated with the disease, some individuals simply forget to drink enough ﬂuids. Others have lost some sensitivity to the sensation of thirst and are unaware when their body is signaling the need for liquids. Taste can also be diminished with Alzheimer’s disease so some persons are less motivated to eat or drink. The following are a few suggestions to avoid dehydration and increased confusion:

Volume 6, Number 2: November, 2000 – January, 2001 A Commentary for Patients, Caregivers, and Others Dealing with Alzheimer’s and Related Diseases By Leslie E. Dennis, Ph.D. Retired from Loyola University, Chicago, Illinois. Diagnosed with Alzheimer’s in January, 2000. A frank, straight-forward point of view

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“Your friends are your friends. Tell them what is happening to you.”

1. Get out of the house. Walk. It will help you both mentally and physically. Regular exercise is still important. See what you can see, go where you can go (safely). Know where you walk and come back the way you went out. Stay away from the wrong places. If you are not mobile, get someone to go with you or take you.

I was asked to write some commentary about Alzheimer’s disease (AD) from the point of view of a person aﬄicted. AD (Alzheimer’s, dementia, or whatever you want to call it) is not a bunch of fun. Most of us who are diagnosed in this category are initially horriﬁed. Who wouldn’t be? Depression, suicide, and other horrors could run through your mind. How can I survive? What will happen with my family? How can I continue to work? These, and far more questions, will attack you and what you always thought was your friendly old brain. Until “they” (the scientists) can come up with true solutions, your brain seems to be working for the bad guys.

2. Stay away from big groups; noise and bewilderment can throw you down. Very nice and well-meaning people do not understand the confusion you might have when in a large group. Try to avoid it, or be prepared for a following day or two of discomfort. For me, a combination of quiet and darkness seems to be a remedy. 3. If you are confused, befuddled or lost, people will help you. Don’t be afraid, but use discretion. Police are a savior in this area. Consider enrolling in the “Safe Return” program through your local Alzheimer’s Association.

You already know you have memory loss. Well, don’t we all? Yes, but not about something you said ﬁve minutes ago, or even a few seconds ago. With Alzheimer’s, memory is in a constant process of decay -- decay of things you know but can’t state like a simple word or even a letter you wrote but can no longer understand.

4. Your friends are your friends. Tell them what is happening to you. They will continue to be your friends, and will help you. Accept that help. That is why we call them friends. Don’t try and hide the disease. Talk about it.

Some ideas for coping Having kicked you around into the reality of this disease, let me now give you some ideas I have picked up from others with AD.

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8. And travel! In the past few years, my wife and I have traveled in the United States, Canada, Turkey, Costa Rica, and so on, mostly in 10-15 day spurts with plenty of time in between. It has been great, and we hope to carry on. My big plan is going to Antarctica in January, 2001. It is the only continent I have not set foot on. How’s that for nuts? 5. Many (oh, so many!) acquaintances will pull the drill of “we all forget things now and then”, or “forget it, you seem OK.” Remember, this is AD. Their experience simply is not the same as our disease.

9. Life, of course, does end. For me, the idea of somehow transﬁguring myself into a sort of walking nice guy with no discernable cogency is not my cup of tea. I have decided that life for me will end when they try to use life support systems. You should think about this and act to deﬁne how things will work for you. Then you need to talk to others about your concerns while you are still able. Complete advanced directives or durable powers of attorney for health care.

6. Get into a support group. They are not in abundance for those of us with AD, but try to get started in one. Try to ﬁnd a fairly small group – 10-15 people, maximum. Some of the patients may be more advanced than you or may hang out in a perpetual state of denial. However, there will still be others in the group who can help you, and some whom you can help. Support groups can, at the least, conﬁrm some of the things that are happening to you.

10. The other side of life can be beautiful for quite awhile. Remember, most people with AD are having longer life spans. The ﬁrst part, however, is the best. Don’t waste it with denial or pretending. Go for it! Meet with your kids and tell them about what is happening. Enjoy them. See more of them.

7. Doctors are people, and many know little more than the average person does about AD. Once having diagnosed it, some see it as a death sentence with little or nothing else they can do except say, “Have a good life!” They need to help us ﬁnd ways to make the rest of our lives better. We need to demand this of them.

MAILBOX Dear Editor, I am a ﬁfty year-old woman living in Stow, Ohio (just a few miles from Akron, Ohio). I was employed for 27

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years in the laboratory at Akron City Hospital (now Summa Health System). About a year and a half ago, I was having a lot of diﬃculty learning a new instrument in our lab. I had always been extremely adept at learning new skills and procedures. I was very frustrated that I had to go over and over and still could not learn the new analyzer. Co-workers would help me out, but I was not retaining the information nor the thought process that I needed.

hoped I could attend. The program would begin with a lecture for both caregivers and Alzheimer’s patients. After the lecture was finished, the caregiver group would continue to interact with the speaker for another half- hour or so while the Alzheimer’s patients had their own group for interacting. To tell you the truth, I think the Alzheimer’s patients’ group always has the best time! The Akron area group is very friendly and we have monthly support groups that meet. Staff from the area Alzheimer’s office are very receptive to adjusting programs and improving. We are fortunate to have such a great team that have put together a super program for both patients and caregivers.

I retired last winter and was surprised with a wonderful retirement banquet where 65 people attended! There were many tears of joy and I felt so blessed to have such a wonderful group of co-workers that was so supportive of me. The lab people continue to call me whenever they have a picnic or dinner scheduled. It’s so great to be included. When I retired, I called the Akron, Ohio area Alzheimer’s Association to see if I could come to any meetings. I remembered being at classes for caregivers when we went through this with my dad. But now when I called, the problem that came up was that all of the classes were for the caregivers and there was nothing for the Alzheimer’s patient to learn or to be able to participate in. I’m pretty strong-willed and knew that the Alzheimer’s patients could also beneﬁt from lectures and discussions. Several weeks later, the Akron Area oﬃce called me and said they were going to try a new format and

Sincerely, Becky Cochran Stow, Ohio Dear Editor, The latest Perspectives newsletter arrived at a particularly trying time for me. I especially enjoyed Jan Mina Phillip’s essay. I can truly identify with her. Thank you for publishing the newsletter. More often than not, I am feeling down or alone. I receive a Perspectives newsletter and feel encouraged and not alone anymore. Sincerely yours, Linda Raymer Clinton Township, Michigan

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Editor’s note: It is difficult to go through discouraging spells and we are glad that Perspectives newsletter is helpful. Alzheimer’s can be a lonely experience and it is important to find companionship whenever possible through support groups or other community programs. Ongoing feelings of discouragement could lead to depression and may benefit from evaluation by a physician.

This new drug also has side-effects for some, and you will want to discuss the risks and benefits with your doctor before seeking treatment. It is well-known that there in inflammation in the brains of persons with Alzheimer’s. There is some thought that anti-inflammatory drugs (like those used in arthritis) can help reduce this inflammation and protect brain cells from damage. Rofecoxib (also called Vioxx) and Naproxen are two drugs currently under investigation for treatment of Alzheimer’s. Although an anti-inflammatory medicine cannot cure Alzheimer’s, there is hope that it could slow the progression of the disease. Researchers are also continuing with their study of AIT-082 (also called Neotrofin), a drug aimed at repairing and helping to grow new brain cells in persons with Alzheimer’s. This is a different approach to the disease and could show promise in restoring some brain function that is damaged by Alzheimer’s. Preliminary results have shown positive effects on memory and these studies will continue on through next year to more clearly evaluate these hopeful outcomes.

Hopeful Research Investigations for the New Year This is a very exciting time in Alzheimer’s research. New ﬁndings about the disease are increasing at a fast pace, and next year we hope to see some exciting progress in a few key areas of investigation. Drug Studies There are numerous drug studies being conducted around the world to try to slow the progression of Alzheimer’s disease. The newest drug expected on the market some time next year is Galantamine. Galantamine may help improve thinking, reasoning and day-to-day functioning for some people with mild-to-moderate Alzheimer’s. It works like Cognex, Aricept, and Exelon by helping to maintain levels of acetylcholine, the brain chemical responsible for memory. Galantamine does not help everyone and it can not stop the progression of the disease, but it may be of some help in maintaining abilities for a longer period of time.

Gene Therapy This past year, Dr. Mark Tuszynski of the University of California, San Diego (UCSD), received government approval to do a gene therapy procedure in eight persons with early-stage Alzheimer’s. This is a new way of attempting to treat the disease and involves a surgical

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procedure whereby a substance called nerve growth factor (NGF) is injected directly into the brain in the hopes of preventing brain cell death. This procedure showed very promising outcomes in monkeys, and it is hoped that this treatment could stop the progression of Alzheimer’s in humans. Next year, Dr. Tuszynski will be starting the treatment in persons with mild Alzheimer’s disease.

Questions and Answers Q. Can drinking alcohol make my Alzheimer’s worse? A. Alcohol consumption is a complex issue that affects each person differently and it is important to review this question with your physician. Many physicians recommend that persons with Alzheimer’s limit or completely eliminate their consumption of alcohol. It is not clear whether alcohol can make Alzheimer’s worse or make the disease progress any faster, but excessive alcohol consumption can kill brain cells (neurons) that are already at risk of damage from the disease. Although an occasional glass of wine or a mild cocktail is not likely to cause this kind of damage to the brain, alcohol can temporarily worsen Alzheimer’s symptoms in some people. Even small amounts of alcohol can affect areas of thinking including concentration, memory, speech, problem solving, and judgement, as well as physical abilities including coordination and balance. It can affect mood and contribute to depression and difficulties with sleep.

Progress with a Vaccine Last year, Elan Corporation developed and tested in mice, an experimental drug (AN-1792) aimed at helping the immune system fight off the formation of amyloid plaques. Many (but not all) scientists think that amyloid plaques are responsible for Alzheimer’s. This past year, Elan went one step further and tested the vaccine in a small number of persons with Alzheimer’s in both the US and in Great Britain to evaluate its safety. The vaccine appears to be well-tolerated. If no significant side-effects are noted, researchers will be able to proceed with new studies in persons with Alzheimer’s to evaluate the vaccine’s effectiveness. This is a very exciting area of research, and Elan Corporation maintains a toll-free number to answer questions and provide updates about this investigation (888-638-7605).

Alcohol can also have a negative or dangerous impact on certain medicines you may be taking. As such, a physician’s recommendations about alcohol consumption may vary from person-to-person depending on each person’s alcohol use history, present symptoms of Alzheimer’s, the impact of alcohol on these symptoms, and the possible eﬀects of alcohol on any current

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medicines. If your physician recommends abstaining from alcohol, consider switching to non-alcoholic beers and wines which are readily available in most supermarkets.

I feared getting lost. I’m not sure how much is real. I feel like a vulnerable old lady. What strengths did you ﬁnd in yourself for coping with the diagnosis? I have an “up” nature that I was born with. I’m small, so have always had to prove myself independent. I’ve got a sound body, a stubbornness, and a sense of humor -- an independent spirit. Family and friends give me strength. I lost my driving privilege, so I bought myself a scooter (an electric cart) and am gradually learning to get around in it. What might be helpful to others? As for what might be helpful to others, I would say take a calendar for your purse or pocket and get a big one for the wall. Call friends. Smell the daisies. Have a pet. Join Marilyn’s group! Try to stay organized, and write everything down.

An Interview with Anne Editor’s note: Last June, a conference on Early-Stage Alzheimer’s disease was held in Castro Valley in Northern California, USA. The conference included a panel (facilitated by Robyn Yale, LCSW) consisting of two persons with Alzheimer’s and two caregivers. One of the panelists with Alzheimer’s was Anne, a participant of the Diablo Respite Center’s (DRC) women’s support club. The DRC Club is a program for women with Alzheimer’s or other related memory disorders. The Club meets weekly for socialization, support, and outings into the community. The following interview is transcribed from Anne’s participation on the panel. We are grateful to Anne for her wise words, and to Marilyn Trabert, director of the DRC Club, for providing this transcription.

How has the DRC Club support group been helpful to you? My God, I’m not alone! I’ve met people in my own condition – interesting people. Such loving, warm people in our group. Everyone has admitted to having Alzheimer’s and is willing to share. The outings are a miracle. We go to interesting places that are mentally stimulating. I get to go to wonderful places that I wouldn’t be able to go to by myself. This group gets us out into life and enlarges our lives. There are lots of diseases, and maybe this is not the worst.

How did you come to understand you had Alzheimer’s? It was a real shocker. I got lost and spent most of the day trying to ﬁnd an address in Mill Valley. I was in a real “state.” I knew something was wrong. My regular doctor sent me to another doctor who bluntly told me I had Alzheimer’s. I went through testing at the University of California, Davis. It made me afraid. I had a sense of failure.

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Today, I will pick a few weeds and a few tomatoes I have grown. Today, I will probably feel sad and lonely for a moment, like maybe my best friend has just died and then wonder if that friend was me. Today I will say a prayer for you. Today, I will play games on my computer and send email to someone special.

What would you like to say to the families and professionals who are here? Be patient with us. Be more tolerant. To the professionals I would say please don’t be too blunt. Show more understanding and sensitivity. We’re supposed to get wisdom from you. Editor’s note: How would you answer these questions that were posed to Anne?

Today, someone may ask me to remember something very important. I will be told to write it down while it is being said to me. I will then forget what is being said as I am writing. Later I will laugh at “self”, for I have just experienced another incident where the mind’s tv-like remote device just hit the oﬀ or mute button in the middle of the conversation. Today will end too soon and tonight, just before falling asleep, I will probably smile. For it is my way of thanking my Big Buddy (God) in the sky, once again, for giving me today. Maybe today is like a living prayer for me. It is, sort of, heaven right here on earth. I can’t think of anything nicer than today. Can you?

Today By Tim Brennan By anyone else’s form of measurement, my today is not much of a day. It is just my day. Today I will wake up and thank God for giving me this time. Today, I will talk with at least one of my children and grandchildren, and we will laugh. Today, I will try to help my wife a little and tease her too much. Today, I will walk around the block and probably smile while walking. Maybe I will fall while walking or eat a bug or walk into a sprinkler’s path, just for the fun of it. Today, I will watch the grass grow, watch some birds ﬂy, and hear neighborhood sounds. I will see some children in the neighborhood. I will say some names out loud and hope that at least one name matches up with one of the children

A Tip for the Winter Months Tim’s poem is an inspirational reminder of the value and joy to be found in each day. For some people, however, the winter months can aﬀect the ability to maintain a positive attitude. In some

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parts of the world, winter brings signiﬁcantly shorter days and much less sunshine. Long rainy or snowy spells can limit one’s exposure to natural light. Some persons respond to this decrease in light with symptoms of depression that can include mood changes, shifts in sleeping or eating habits, and increased problems with concentration and memory. Persons with Alzheimer’s, as well as those providing care. can be aﬀected.

bulbs or special light boxes in the home can compensate for the lack of natural sunlight and help to elevate mood. A nice vacation to a sunny climate can work wonders, too!

Volume 6, Number 3: February – April, 2001 Exercise and Alzheimer’s Working Towards a Healthy Mind and Body Many people are familiar with the more well-known benefits of exercise. Regular exercise helps to maintain a healthy heart and cardiovascular system, controls weight, and assists in maintaining healthy muscles. What is less publicized, however, are the benefits of exercise for persons with Alzheimer’s. Exercise can improve blood flow to the brain, elevate mood, release tension, and maintain flexibility and mobility. These can be valuable benefits when facing the challenges and symptoms of Alzheimer’s. Oxygen and the Brain The brain makes up about 2 percent of your whole body weight, but consumes roughly 20 percent of the oxygen that you breathe. This oxygen is essential for the brain to function. High blood pressure, cardiovascular disease, or elevated blood sugars (such as those attributed to diabetes) can all reduce blood flow and oxygen to the brain, and result in poorer brain function. These

If you or your loved ones notice symptoms of depression during these winter months, do talk with a physician or health care provider. Some persons respond to a trial of an antidepressant. Others ﬁnd that the use of certain light

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conditions can worsen some of the problems with thinking and functioning already encountered in Alzheimer’ so it is important to have any of these problems monitored by your physician. Regular exercise, however, can boost blood ﬂow and oxygen levels in the brain and may have a direct beneﬁcial impact on some of the symptoms of Alzheimer’s.

symptom of memory loss. The scientists plan to study the eﬀects of exercise in mice that have been engineered to have a form of Alzheimer’s to explore whether exercise can help to grow new brain cells in the hippocampus and thereby slow the progression of the disease. If it worked in mice, the next step would be to test the exercise hypothesis in humans. This is very preliminary work, but it doesn’t hurt to start exercising now just in case their hypothesis proves to be true! Exercise and Mood Many individuals with Alzheimer’s also have symptoms of depression. The stress of the disease combined with changes in the brain can result in changes in sleeping or eating patterns, increased feelings of sadness or hopelessness, and a disinterest in previously enjoyed activities. Depression can also eﬀect thinking and concentration, and worsen some of the memory problems of Alzheimer’s. It is not uncommon for doctors to prescribe an antidepressant to try to treat these symptoms.

New research from the Salk Institute suggests that laboratory mice that had regular exercise were better at mental tasks than mice who had not had exercise. Speciﬁcally, the exercising mice sprouted new brain cells in the hippocampus, the part of the brain that is responsible for memory. The brain cells in this region are some of the ﬁrst that are destroyed by Alzheimer’s disease and result in the hallmark

It is well-documented, however, that routine exercise is also a helpful remedy in alleviating symptoms of depression. Exercise can build a healthy appetite, inﬂuence and regulate sleep patterns, and release endorphines in the brain which contribute to a feeling of well-being. Many individuals with Alzheimer’s will testify to feeling

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brighter, more alert, and uplifted after physical exercise.

changes in vision that occur with Alzheimer’s can make you even more susceptible to falls, so it is wise to keep your bones and muscles in good form to oﬀset this risk.

Releasing Tension As with symptoms of depression, it is also common for individuals with Alzheimer’s to experience spells of irritability, impatience, or agitation. These feelings can result from the frustrating daily encounters with memory loss and other symptoms of the disease. Sometimes we all need to let off a bit of steam, and exercise is an excellent outlet for frustrations. Good physical exercise elevates the heart rate and seems to burn off tension and stress. Just as many feel more alert after exercise, others will report the beneficial calming effects of physical activity. The focus on physical exercise can take the mind off of worries and relax the thoughts a bit.

There are many forms of exercise and you can explore to find the one best suited to you. Walking and swimming are two very popular and excellent means of activity and can be combined with stretching and strengthening routines to round out your fitness program. You can also check with your local senior center or YMCA (in the USA) for exercises classes. Some may offer Yoga or Tai-chi which are both very good exercises for strength and balance. Also see page 6 for a new helpful resource to use as a guide. And remember, always consult with your physician before beginning any new exercise routine. It is important to tailor a program to meet your own specific needs, health conditions, and body type.

Maintaining Strength and Coordination Some individuals with Alzheimer’s are at risk of becoming more sedentary as the disease progresses. Lack of meaningful activity can lead to decreased muscle strength and reduced ﬂexibility. Maintaining strong muscles, balance, and coordination may help you function independently for a longer period of time and reduce your risk of injury from falls, sprains, or other accidents. Each year, hospitals in the United States have about 300,000 admissions for broken hips alone, and falls are often the cause of these fractures. The spatial and perceptual

What Do We Value About Our Support Group? Editor’s note: Over six years ago Bill McCurdy, diagnosed with Alzheimer’s, came to see me at our University of California, San Diego, Alzheimer’s Disease Research Center. He had participated in an eight-week educational support program we had developed for newly diagnosed individuals and their families. At the end of eight weeks, Bill did not want the experience to end, and requested an ongoing group. A

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few months later, his request became a reality and San Diego’s first ongoing support group for persons with Alzheimer’s began. Now, six years after his advocacy efforts, we have three weekly support groups in different regions of San Diego County. Bill’s efforts are testimony to the power that one voice can have.

“When I came to the group, I was very depressed, but it’s going away. Being with other people with the same problems helps… being able to talk about it and work on it.”---Betty “The interaction – being here talking to everybody and being able to express myself without being criticized. We learn from each other. Everyone has so much wisdom. We also get lots of laughs in this group.”---Chuck

The following quotes from support group participants are in response to the question “What do you value about your support group?” We are grateful to the San Diego chapter of the Alzheimer’s Association and support group members for permission to reprint these responses. Call your local Alzheimer’s Association for information about any support groups in your area. If there are no groups available, do as Bill did and ask that one be started!

“I’m not alone.”---Sally “It’s the sharing – sharing your hopes and thoughts.”---Kirk “You see that everyone is still the same person. We have diﬃculty doing things, but we’re not lesser people.”---Lola

“The big thing for me was the fear of not knowing what was going to happen, the fright of mental confusion, the fright of what you hear about it [Alzheimer’s], the frightening eﬀect it has on your spouse and children. But learning more about it has helped. Groups like this are survival. I look forward to them and know that I can be here. I’m having less trouble crying and being depressed which is really great. Problems aren’t as drastic as they used to be.” ---Jim

“I’m not one to talk about myself. However, I felt better in saying some things. That wasn’t so bad after all. It’s always pleasant to be at the group.”---Louise

“We’re from all walks of life and it’s wonderful to get together and discuss things. We want other people to know there are these groups and that there are still things to do.” ---Harvey

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“My depression comes and goes, but these groups help me because it’s a place I can come to and talk about it – that and other things that frustrate me—not always stuﬀ about memory loss. My choice is not to talk with my family about it [Alzheimer’s] so I talk in the group.”---Frank

floppy sandals. The bailiff escorted her out the door. She had not followed the court dress code. A number of us were assigned to a jury pool for a pending trial. The Judge wasted no time. He began to interrogate potential jury members regarding their experience, (personal or public) relating to the issues of this case which involved addiction, drugs, and mental health. My own specialty is a psychiatric nurse and I hoped that I would not get tossed out of the jury pool for what sounded like an interesting case. I was committed to do my civil responsibilities as a member of the jury. However, during the questioning of potential jury members, I noticed how quick, focused, and clear-headed the potential jury members were and how comparatively slow my answers would have been. I have problems remembering numbers, dates, times, and places. Reluctantly, I raised my hand and told the Judge that I had a medical issue. He took me aside to assess the nature of the disorder. I knew I had to tell the truth: “I have early alzheimer’s or Mild Cognitive Impairment.” For my honesty, he said a “reward” for me; he would remove me from jury duty for life. But for me, this event reminded me that slowly, I am becoming less functional and unable to fulfil my civic responsibilities. For me, this is a great loss.

“I like the exchange of information about medicines and treatments.”---Jorgen “You can always talk with your friends. We help each other out. We’d all be the ﬁrst to help each other.”---Glen “I value the sharing of our common problem. We get support from each other. Otherwise you feel so alone in other company.”---Peggy

MAILBOX Dear Editor, I was always loathe to participate in jury duty. But now that I have more leisure time, I welcomed the opportunity of participating in a real trial. When I received my jury summons, I was eager to serve. And I wanted to ﬁnd out how the judicial system really works outside of TV. I woke up for my 9:30 call and arrived early and prepared myself for the long wait. To my surprise, we had clear and helpful televised instructions about our responsibilities. Then all heads turned as a tall blond slithered in wearing only her belly button, cut oﬀ shorts, and

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Editor’s note: Because this woman is still working and she is concerned for her conﬁdentiality, she asked that her name be withheld from this correspondence. Mild Cognitive Impairment (MCI) is a term used for individuals who have abnormal changes in memory, but do not have any other symptoms. MCI converts to early-stage Alzheimer’s when the problem with memory broadens to include other areas of thinking (such as judgment or problem-solving) and these problems begin to aﬀect daily functioning.

All my life I have been concerned about those left out of the American Dream. In the sociology classes I taught, we studied the work of Martin Luther King, Jr. and his creative innovations in leadership. I never imagined that this stuff would personally apply to me though. I would never be black and unable to sit at a lunch counter; I would never be gay and unable to get married; I’d never even be a woman and unable safely to take a walk at night. And when I was first diagnosed with Alzheimer’s, I still didn’t think Martin Luther King, Jr. had anything personally to say to me. But then I reread King’s magnificent “Letter from a Birmingham Jail” where he passionately spoke out about the indignities and terrors of being a southern black, and a phrase jumped out at me: “when you are forever fighting a degenerating sense of nobodiness…” What a perfect description of what we’re up against! A classic book about us is called “The Loss of Self.” A typical recent book by a caregiver is called “He Used to be Somebody.” She shares the continuous state of mourning that transpires as she loses Tom in bits and pieces. The American Dream, which King died for, is that nobody deserves to feel “a degenerating sense of nobodiness.” Everybody needs an opportunity to develop his or her potential to the fullest. We who have Alzheimer’s can struggle for this Dream to become a reality. We can learn from King and his

Editor’s note: The following message was edited for length with the author’s approval. For our international readers, on January 15th, Americans celebrated Martin Luther King Day, a national holiday in honor of this great civil rights leader. Dear Editor, I’ve been thinking about Martin Luther King Jr. and the American Dream of opportunity for all. My parents, Jews whose ancestors immigrated here not many generations before, believed in the American dream. There were no immovable barriers to seeking our personal fulﬁllment in work or in family life – just challenges that could be overcome. There was always possibility, hope, and opportunity. Even if one got cancer, one could still live the American Dream – one could ﬁght bravely and if necessary, die with dignity. In America there was always the opportunity to be somebody and to be yourself.

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movement. We can boldly face the worst, and in the teeth of it all proclaim we are still Somebody.

begins by discussing the basics of exercise and goes on to demonstrate many of the exercises discussed and illustrated in the book. Throughout the video emphasis is placed on safety and proper form when doing exercise, and also on ways to adapt the exercises to each person’s level of ability.

Morris Friedell Montana

A New Resource Exercise: A Guide from the National Institute on Aging

To Drive or Not to Drive? Editor’s note: The author of this article served as a United States Air Force pilot for 8 years and fought in the Vietnam war. After serving in the Air Force, he went on to dental school and practiced dentistry for 20 years. He was diagnosed with Alzheimer’s in 1996 and has since been diagnosed with Parkinson’s disease. He is currently involved in an Early-Stage Alzheimer’s Support Group at the Center for Brain Health in Dallas, Texas. His name is withheld upon request.

Our cover article reviews the importance of exercise for persons with Alzheimer’s disease (AD). Regular exercise is also essential to maintaining the well-being of persons caring for someone with AD, and sometimes families can find meaningful ways to exercise together. A new comprehensive resource from the National Institute on Aging (NIA) provides some very helpful guidelines towards safe and effective exercise that can be done solo or with a partner. “Exercise: A Guide from the National Institute on Aging” is a 100-page beautifully designed book that outlines the benefits of physical activity for older people and explains safe exercises. Illustrations show the viewer how to do strength, stretching, and balance exercises properly. The text also covers nutrition information as well as precautions to take when beginning an exercise program.

The issue is what to do when diagnosed with dementia and there is a recommendation to stop driving immediately, today! Logic says, “I drove to this appointment and had no noticeable trouble. Why should I no longer be allowed to continue driving?” For the next few months, this created quite a conﬂict within my family. There seemed to be a point of confusion on my part as to whether I was “that bad” or could just “watch it” until something happens. After all, I’d been driving for all of my adult life and only had a few minor accidents. How could I

The NIA exercise book also has a companion video that is available for a small fee. The 48-minute videotape

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be expected to give up my keys without a ﬁght? As a previous US Air Force pilot, I felt as though I was a better driver than most others on the highway and therefore, still safe. I hadn’t even had any serious incidents with the authorities. Surely I was safe enough to drive to the grocery store, one mile from my home.

were driving, I could just turn into the area that I wanted to check out and be done with it. It’s darned inconvenient! There is also the loss of the fun of driving. I consider driving a pleasurable activity. It is also somewhat of a man’s identity from the time he turns 16. In my opinion, for a woman, the house is her status symbol. For the man, it’s usually his car! However, one must remember that dementia is a disease of the brain which produces a progressive and irreversible loss of memory function. Several retrospective studies have found that people with dementia are involved in twice as many accidents as their age-matched control subjects. Research shows that dementia impairs reaction time and aﬀects peripheral vision, depth perception, as well as night vision. Problem-solving abilities become overwhelmed and reaction time is impaired as the person is slower to react because of his decreasing powers of concentration and memory. This may leave the driver confused in a familiar intersection. Driving requires highly complex interaction between the eyes, brain, and muscles. The average driver must make approximately twenty major decisions in less than a half a second for every mile driven. Unfortunately, there is no gauge to allow us to measure the rate of change in driving ability while following the progression of dementia over time. Research also reveals that the average elderly person

Why Do You Want to Take My Car Keys Away? To stop driving would mean giving up control of my life. Someone would have to drive me to the grocery store, the bagel shop, the church, the raquetball court, the barber shop, even the Senior Center. All of a sudden I would have to ﬁt into everyone else’s schedule. I wouldn’t be able to go anywhere unless someone had the time to take me. When they did have the time, I would frequently have to accompany them on errands that I may not want to do for more time than I wanted to be away from home. There would also be a loss of spontaneity. If I saw something that I wanted to investigate more closely, I would be a half-mile down the road by the time I’d be able to say what I wanted to see and to defend my curiosity. If I

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drives 3.5 miles to each medical appointment, 4.7 miles to their place of worship, and 3.5 miles to the places they shop. People with dementia cannot always walk to all of these places and so rationalize that they must continue driving. In all of these situations, the threat of disorientation is always there. Finally, dementia, coupled with medications may place one at further risk of decreased abilities.

There are some good things to contemplate, though. There is only one insurance bill, I have maintenance and upkeep on only one car, and I now have my own chauﬀeur and companion. Also, I now see things as a passenger that I was never able to see as a driver.

Stem Cells In the News There has been an exciting breakthrough in stem cell research that could have an impact on treatment for Alzheimer’s disease. In our bodies, we have different kinds of cells responsible for different parts of the body. For example we have distinct brain, bone, muscle, liver, and blood cells. In Alzheimer’s, brain cells die and this results in the symptoms associated with the disease. Stem cells are unique, however, in that they grow in human embryos and have the ability to develop into any other cell made by the human body. Stem cells are of great interest to medicine and science because of their potential to replace cells that die off in many illnesses including stroke, heart disease, Parkinson’s, and Alzheimer’s.

What Matters? There is really no use for me to argue about the issue of driving. When I consider the liability issues for myself, as well as my caregiver, it simply isn’t worth the risk to continue driving. I must consider the safety of passengers, pedestrians, and other drivers as well as innocent children and myself. I checked with my attorney and my insurance company and they agreed that having a diagnosis of dementia on my records would probably prevent them from standing behind me in the event of an accident. As my caregiver was warned, taking my keys away contributed to my depression. Check with your church, or senior center to see if they have a volunteer program that will pick you up and take you to your activity and back. Also, your local public transit system may have a disabled program that will oﬀer you rides.

Scientists have been growing stem cells in laboratories to better understand their promising potential for treatment. Thus far, the only source of stem cells has been human embryos derived from fertility clinics or aborted fetal tissue. Due to the abortion controversy in the United States there have been many ethical and federal funding barriers to using fetal tissue for furthering this

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investigation. Recently, however, Dr. Paul Sanberg of the University of South Florida used stem cells derived from human umbilical cords in his stroke research. In animal experiments, these stem cells appeared to greatly speed recovery after stroke. Sanberg hopes to try this treatment on human stroke patients in the next year or two. Using the discarded umbilical cords of the 4 million babies born in the US each year provides a rich and far less controversial source of stem cells. If preliminary research shows further progress in human trials, this stem cell work could move into Alzheimer’s research with exciting promise for replacing damaged brain cells and reversing the eﬀects of the disease.

“Although your memory may fail you for specific facts or details, chances are there is a wealth of recollections, feelings, thoughts, and opinions that you can still communicate to others if given a chance.” It is also true that memory can be unpredictable. You may find that some things stay imprinted in your mind while the memory of other events, facts, or conversations seems to disappear in a matter of moments! We often rely on our memories to share important stories that convey our ideas, opinions, and personal histories to others. The language, concentration, and memory problems inherent in Alzheimer’s may make it increasingly difficult to communicate these stories and feelings. Some people fear that with a progressive memory problem, they will lose their sense of personal history or identity and be unable to express it to others.

Volume 6, Number 4: May–July, 2001 Capturing Memories: Recording your Recollections for Yourself and Others It is well understood that short-term memory loss is the hallmark symptom of Alzheimer’s disease. Although persons with the disease may have very clear recollections of the distant past, it is much harder to develop more recent memories. As such, a memory from childhood may seem very clear and yet you may have no recall of the program you watched on television last night (or even an hour ago!).

Fear not! Although your memory may fail you for speciﬁc facts or details, chances are there is a wealth of recollections, feelings, thoughts, and

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opinions that you can still communicate to others if given a chance. Although some families use video cameras or tape recorders to record memories and dialogues, these methods are sometimes a bit more complex and require equipment that is not available to everyone, nor necessarily easy to use. Another option, however, is through writing. There are some helpful formats available to help you and your family record your reflections and personal history in fun, interactive, and quite simple ways. The following resources are referenced at the end of this article and are readily available by special order or in your local bookstore. Conversations by Susan Goldfein, is an interactive photo and story album designed to help the reader create his or her life story. The format of the booklet helps the user recall and record memories spanning from early childhood to present day. The finished book becomes a personal history that can include photographs, records of significant life events, and personal narratives.

Questions evoke speciﬁc memories such as “What was one of your most memorable toys as a child?” Others are more general and relate to the present. For example, “What is your favorite breakfast food?” Some questions are more philosophical and timeless such as “What kinds of qualities do you look for in a friend?” Questions cover experiences about family, friends, education, work, and spiritual or philosophical beliefs. Not all questions may appeal to you, or you may choose not to discuss some of the topics. But chances are, many of the questions will help to prompt interesting reﬂections or memories that may otherwise never be voiced. It is often helpful to have a family member or friend ask you the question and then write down your answer as you reply. This provides an opportunity for an interactive activity that often sparks conversation. As Alzheimer’s disease advances, it is likely that you will need more assistance from others. Some care may be provided by family or friends who know you well. But it is also possible that new people may enter your life; you may meet new friends or aides through various Alzheimer’s related programs and sometimes it takes time to really get acquainted. These autobiographical journals can serve as a way for others who may be providing assistance to you to learn about your personal history, values, likes, and dislikes. Reviewing a passage in the

Other books are available through your local bookstore (usually found in the genealogy or gift book section). The most user-friendly of these books follow a simple question and answer format. Often broken up into months of the year or sequenced chronologically over a lifespan, these journals feature one or two questions per page with ample lined space for writing the answer.

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journal together might prompt recall or provide an avenue for reminiscence. If memory fails, your journal will serve as a record of your life experiences and it can speak for you. Give these autobiographical journals a try. You might ﬁnd that you have more of a memory than you think!

for those who care for them. My husband is absorbing (and re-absorbing) the recent piece about driving – an enormous issue for him. Thanks and keep up the good work.

References: The Book of Myself by Carl and David Marshall. Hyperion Publishers. $15.95 A Family Legacy for Your Childen – Reﬂections from a Mother’s Heart. Edited by Terry Gibbs. Word Publishing. $12..99 To Our Children’s Children – A Journal of Family Memories by B. Greene & D.G. Fulford. Main Street Books-Doubleday Publishers. $16.95

New Online Chat Room for People with Memory Loss

Peggy Anne Davis Berkeley, California

Some people with Alzheimer’s have found a computer to be a helpful resource for information and sharing. Although there have long been online discussion groups for caregivers, there have been far fewer options for those diagnosed with a memory disorder. Recently a determined group of individuals with memory loss have decided to form their own online chat group. For those of you who use the computer and have internet access, click onto http://www.dasn.org to learn more about this group and opportunities for sharing.

Conversations by Susan Goldfein, EdD.

MAILBOX Dear Editor, This magazine has saved me. When I get down, I get old copies out and re-read them. I’m only 75 and in good health. But I forget things – people’s names and where I put things, etc. My doctor is very helpful. Sincerely, Martha (in Michigan) Dear Editor, We greatly appreciate Perspectives. The articles are wonderfully geared to those with early Alzheimer’s and insightful

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Education and Referral (ADEAR) site at http://www.alzheimers.org.

New Resource 2000 Progress Report on Alzheimer’s Now Available

Essays on Alzheimer’s Early Stage Support Group: My First Step in the Right Direction?

While 25 years ago, relatively little was known about the processes in the brain that lead to Alzheimer’s, researchers are moving ever closer to solving the puzzle of the disease. Progress Report on Alzheimer’s Disease, 2000 presents important scientiﬁc advances and information about four pieces of the puzzle that are falling into place: the main characteristics of Alzheimer’s, its causes, how to diagnose the disease, and how to treat it.

by E. L. Gorman I was working as a psychologist in a correctional institution and began to experience problems with my shortterm memory. My colleagues in the institution soon knew me as Dr. G, the absent-minded professor. After a number of repeated incidents it became clear to me that something was wrong. I initially diagnosed myself as having Attention Deficit Disorder (ADD). This provided me with a possible explanation for my memory problem. I was having difficulties because my mind did not focus, I was impulsive, and became frustrated easily with performing simple tasks such as typing, filing, and remembering telephone numbers and procedures for operating the computer. Eventually my output in producing reports became a concern. Finally, I became so frustrated, angry, and depressed. I went to see the doctor to find out why I was behaving so negatively.

Progress Report on Alzheimer’s Disease, 2000 spotlights recent research conducted and supported by the National Institute on Aging (NIA) and eight other Institutes at the National Institutes of Health (NIH). It describes new ﬁndings and the next steps in several important areas: the cause of Alzheimer’s; improving early diagnosis; developing drug treatments; improving support for caregivers; and building the Alzheimer’s disease research infrastructure. This report oﬀers a brief outlook on future Alzheimer’s research, including a description of the NIH Alzheimer’s Disease Prevention Initiative, and lists more than 100 references.

After a thorough medical exam, an MRI and CAT scan, the psychiatrist told me all the signs pointed to a diagnosis of dementia of the Alzheimer type. It was not Attention Deﬁcit Disorder (ADD), but much worse, AD or Alzheimer’s

The full text of Progress Report on Alzheimer’s Disease, 2000 is available on the web at the Alzheimer’s Disease

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disease. My initial reaction was “why me?” I felt angry, bitter, and sorry for myself. After shedding some tears, I said, “Wait a minute, what am I crying about? Here I am 55 years old, I have a great wife who has been by my side for 34 years of my life, I have two very understanding kids, and a beautiful little granddaughter. I have had a very rewarding career as a college instructor and certified psychologist for twenty-five years. What am I whining about? I’m a lucky man! I have a lot to be thankful for.” At that moment, I felt relief and a surge of positive energy came into my mind. Coping with Alzheimer’s disease at my age has not been that difficult. The early diagnosis has given me time to enjoy the life I have now. I also have the faculties to appreciate the simple things: a beautiful sunset, a tree in spring, summer, or autumn, a poem, music, the colors of a painting, a baby’s smile, a beautiful woman, the rising sun over the city. All these things are free and how lucky I am to be able to enjoy them. Yes, having Alzheimer’s has changed my life; it has made me appreciate life more. I no longer take things for granted. I realize that time is precious and not to be wasted on negative emotions like anger, revenge, and hatred. I have learned the power of forgiveness. My grandfather used to tell me, “kill them with kindness.” I now understand what he meant.

One of the most important ﬁrst steps I took was to join the Early Stage Alzheimer’s Support Group. (editor’s note: Mr. Gorman’s group is in Edmonton, Alberta, in Canada). The group facilitators, Doneka and Paul, helped get me involved in discussions about issues related to ways of coping with the disease. The interaction with others was stimulating. It got me out of the house and gave me a purpose. I looked forward to Thursday each week. I enjoyed the interaction and meeting new members who were struggling with the same issues as myself. The group experience brought home the importance of talking and disclosure in promoting mental health. In the future, I would like to see a follow-up with members and try writing as a means of exploring thoughts and feelings in more depth. Programmed writing is an approach that has been used successfully by therapists in helping individuals learn to cope with problems in relationships and daily living. I think writing would supplement the Early Stage Alzheimer’s Support Group by allowing group members to keep in touch as they learn to meet the challenges of living with Alzheimer’s disease. What I have learned from my experience is that a diagnosis of Alzheimer’s disease in its early stages can be a life enhancer because at that phase you can do something about it. By keeping your mind and body active

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you might slow down the progression of the disease. Joining the Early Stage Alzheimer’s Support Group was my ﬁrst step in the right direction. I look forward to the next step in the process.

others: a joke, helping someone get up, explaining things about the disease. Like many others, I discovered that people will slip down and out very quickly if we do not help them up. Our support group at Northwestern University in Chicago laughs a lot. We laugh at our disease and dementia, often with dark humor.

Reducing Dread and Marginalization By Leslie E. Dennis, Ph.D After many(!) tests, I was diagnosed as having Alzheimer’s (AD). Of course that meant probable, or if you push the doctor, probably probable. I did the usual – considered suicide, sure that life must end quickly, deep dark depression. I began to realize that AD also meant a rather long life (far more than I had thought). It became worse. I do not want to be a walking person that is not me! I was truly in the pits.

There is a coming and a going, and there is a sharing of the problems, good and often bad. We are an ongoing group, and we can see our fellow “patients” growing in their celebration of life and yet fully knowing the future of the disease at the same time. I have changed through all of this. I walk a lot. I have had discussions with my adult children about marginalization, reminding them that us old folks still want to be part of the party! Pre-teens and teenagers, of course, know everything, but that has always been their domain. Finally, I think we are making a mark on the doctors who treat us. Most of my doctors use my ﬁrst names and I use theirs. If not, I resurrect my “Dr. Dennis” thing. More importantly, I am now always included in the discussions with my wife, Barbara, the doctor, and me. If there is one thing, do not be marginalized, AD or not!

I realized that I was losing memory, names (but not faces), uneasy with big groups, concerned about losing my way on streets, well beyond driving a car, hesitant to talk to old friends. I lost the ability to use my computer eﬀectively. I was a mess. Support groups started me up, but slowly. Could these people be me? Yes. But some do not even talk; how could I learn from them? I began to understand the concept of marginalization and its relationship to AD. Simply put, get up and do what you can or you will fade, fairly quickly. As I tried this out with myself, then my children, it seemed to work. You remain someone. Very slowly, I tried to help

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was loving it. When I get to the center, Judy has coffee and juice ready and we all visit. At first, I didn’t know anybody. Now I consider them all my interesting friends. We talk about everything – our lives, our families, the news – and about what is happening to our brains. I can’t believe I have Alzheimer’s disease. I know I’m forgetful, but I don’t feel any different. I want to fight my disease. Judy gets us involved in activities that help our memory. I’ve learned cues to help me remember names of my friends at the center.

Spotlight on a Program: The Adult Activities Center Costa Mesa, California The Adult Activities Center at the Adult Day Services of Orange County, California, was the recipient of the 2001 MindAlert Award. This award is given by the American Society on Aging and the Metropolitian Life Foundation to recognize innovations in mental fitness programming for older adults. The Adult Activities Center offers two tiers of services to address the unique needs of people with early-stage Alzheimer’s. The New Connections Club is a program that uses research-based activities such as memory retraining, exercise, and reminiscence to enhance mental, physical, and emotional functioning. The Activities Club goes on community outings and is geared to relatively independent participants who can no longer benefit from the memory training. One participant’s testimony provides the best description of these excellent programs:

Sometimes we practice the names of famous faces and places; other times we play games like Password to help make it easier to remember words. If a tool isn’t used it gets rusty. If the mind isn’t used, it decays. I must admit it’s hard to practice things that came automatically before. After class, Judy changes the pace, taking us out for a walk at a park or the beach. One of the best parts of the day is going out to lunch at one of our favorite restaurants. When we get back to the center, we are ready for another class, art therapy, or a group discussion. It just seems that everyone has an interesting story to tell. When I go home, now I have something to share. I feel the best when I do come because of the activities and the companionship. I realize I’m not alone in this Alzheimer’s thing and that everyone here is caring. There is no pressure. The Adult Activities Center also oﬀers a 10-week support group for persons with Alzheimer’s and their families to provide information, guidance, and support. Although few regions are fortunate to have such an outstanding and

Now that I have Alzheimer’s disease, most people talk about me, not with me. It’s rare that I get a chance to let others know what life is really like for me. Since my diagnosis, I’ve had to give up driving and hardly see my old friends anymore. If someone’s not telling me what to do, they’re trying to do it for me. But not at the center. My wife reminds me I have been coming for six months. When I ﬁrst came I was reluctant in the morning, but by the end of the day, I

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comprehensive program, some aspects of the Adult Activities Center might be able to be replicated in your own home or community.

Gamma Secretase Many scientists think that the amyloid plaques that form in the brains of persons with Alzheimer’s are the primary cause of the disease. While we all have amyloid in our bodies, sometimes certain enzymes cut up this protein into damaging fragments that can become destructive amyloid plaques. The two enzymes that do this abnormal “cutting” are gamma secretase and beta secretase. Beta secretase has just recently been identiﬁed, but gamma secretase has been known for a few years. Four research centers in the United States are getting ready to test a medicine that may stop gamma secretase from cutting the protein into potentially plaque forming fragments. This ﬁrst study of a Gamma Secretase Inhibitor will test the safety of the drug and how long it stays in the body. This is an exciting development in research and a whole new approach in attempts to stop the progression of Alzheimer’s.

Research Updates Scientists continue to make promising advances in investigations of new treatments for Alzheimer’s disease. The following are a few highlights: New drug now approved The Food and Drug Administration (FDA) has approved a new drug for the treatment of Alzheimer’s disease. Galantamine (on the market as Reminyl), will soon be available in pharmacies. Like Aricept and Exelon, Reminyl helps to increase levels of acetylcholine, a chemical in the brain that is responsible for memory. Reminyl is unique, however, in that it also stimulates the nicotinic receptors in the brain to release even more acetylcholine. So it works in two therapeutic ways. At present, Reminyl needs to be taken twice a day, but studies are underway to investigate the effectiveness of a once-a-day time-released form of the drug that may provide a more steady release of the drug into the body. If you are already benefiting from Aricept or Exelon, you may not need to change medicines. But, it is always important to consult with your doctor about whether you could benefit from any new drug.

Gene Therapy Update In a past issue of Perspectives, we reported on the research of Dr. Mark Tuszynski of the University of California, San Diego, and his eﬀorts to use human gene therapy to treat Alzheimer’s. This approach attempts to prevent brain cell loss in the disease by surgically injecting a natural brain-survival molecule called “nerve growth factor” (NGF) directly into the brain. According to Tuszynski, “NGF gene therapy is not expected to cure

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Alzheimer’s, but we hope that it might protect and even restore certain brain cells and alleviate some symptoms such as short-term memory loss, for a period that could last a few years.” The ﬁrst participant of eight has been enrolled in the study and has successfully completed surgery. The participant is a former teacher from Oregon diagnosed with Alzheimer’s three years ago. There were no complications thus far from the surgery and researchers will be watching closely in the months ahead to

observe the eﬀects of gene therapy on her memory and mental abilities. Around the world researchers are investigating ways to prevent, treat, and ultimately to cure Alzheimer’s. You may be a candidate for research studies being conducted in your region. For more information contact your local chapter of the Alzheimer’s Association or click onto http://www.clinicaltrials.gov to learn about studies in your area.

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VOLUME 7

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Volume 7, Number 1: August - October, 2001 Alzheimer’s Advocacy: Powerful Voices Speak Out What You Can Do To Speak Out Alzheimer’s Association Australia National Conference: A Perspective of A Person with Dementia by Lynette Gray Helpful Resources Talking with Your Doctor: A Guide for Older People Volume 7, Number 2: November, 2001 - February, 2002 Food For Thought: The Role of Nutrition and Alzheimer’s Helpful Resources: Beginning to Make Sense: A Guidebook for Persons in the Early Stages of Alzheimer’s Disease and Their Caregivers by Cordula Dick-Muehlke, Ph.D Ageless Design: An Innovative and Informative Web Site A Message to Family Members and Friends by Members of the North/Central Okanagan Early Stage Support Groups of British Columbia, Canada

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Building the Partnership – Speaking with Your Doctor by Matthew Dubiner Volume 7, Number 3: February, 2002 – April, 2002 Family Relationships Alzheimer’s Association 14th Annual Public Policy Forum April 27-30th, 2002 Reflections on Relationships Key Ingredients by Chip Gerber An Old Lesson Relearned by Linda Raymer A Helpful Resource Volume 7, Number 4: May – July, 2002 The Alzheimer’s Survivor Some Thoughts on Being an Alzheimer’s Survivor Through the Eyes of A Person Diagnosed Early With the Disease by Thaddeus Raushi, Ph.D. Thoughts on the Topic of Spirituality and Alzheimer’s

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Several of these individuals participated in workshops and plenary sessions, were spotlighted on national television news shows, gave testimony at a Senate committee hearing, and accompanied their state chapter delegations on visits to their representatives in Congress. This year's focus was on doubling the amount of funding for Alzheimer research from 500 million to one billion dollars. The Alzheimer advocates who went to Capitol Hill encouraged their Senators to vote for an amendment to the budget resolution (the bill that sets overall funding for federal government programs) sponsored by Senators Arlen Specter and Tom Harkin to continue the funding necessary to double the budget for research at the National Institutes of Health (NIH). Later that day, the U.S. Senate voted overwhelmingly, 96-4, to approve the amendment - a significant "first step" toward achieving the Association's goal. Jennifer Zeitzer, Associate Director of Federal Policy stated: "Our advocacy is already starting to pay off!"

Volume 7, Number 1: August - October, 2001 Alzheimer’s Advocacy: Powerful Voices Speak Out Editor’s note: The following article is revised from an internal memo of the National Alzheimer’s Association. We are grateful to Jennifer Zeitzer for her assistance with this article and to the National Alzheimer’s Association for permission to reprint Frank Carlino’s Congressional testimony. More than 500 people from 45 states and Canada recently gathered for the 13th Annual Alzheimer's Association Public Policy Forum, held March 30th to April 3rd in Washington, D.C. The impact of the Forum was heightened by the presence of 20 individuals with Alzheimer's who provided an invaluable and rarely heard perspective in advocacy testimony. “Instead of dwelling on what I have lost, I am focusing my attention on the activities I can still enjoy.”

The following testimony to Congress from Frank Carlino, diagnosed with Alzheimer’s in 1998, speaks to the

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powerful impact that persons with Alzheimer’s can have in advocacy eﬀorts:

have to lay off some of my staff. I was under a tremendous amount of pressure, and my mistakes became more frequent. I managed to come up with a variety of excuses for my poor performance—stress, anxiety about the future, concern for the welfare of my employees, etc. I figured that I was just going through a rough patch and that things would correct themselves over time.

Thank you very much, Senator Specter and Senator Harkin, for giving me the opportunity to testify. I am honored to be here. My name is Frank Carlino and I am from Cornwall, New York. I have been married to my wonderful wife, Elizabeth, for 40 years. We have been blessed with 4 terriﬁc children and 13 amazing grandchildren. I was diagnosed with early-onset Alzheimer’s disease in July, 1998. At the time, I was 58 years old. Although Alzheimer’s disease primarily aﬀects older people, an increasingly large number of early-onset patients are in their 40s and 50s.

The recession ended, the economy turned around, and my ﬁrm began to send out proposals and bid on jobs again. Although I would send out 25 proposals a week and we were bidding on as many jobs as possible, we still weren’t getting any work. It was only after I was diagnosed that I realized why almost all of our proposals were rejected. They were a mess! I had submitted poorly organized proposals and bids that were full of spelling errors and grammar mistakes.

I am aware that on the outside, it does not appear that there is anything wrong with me. In fact, I may even look like someone you know—a friend or neighbor, or even a colleague. But I have a disease that is slowly destroying my mind. I am here today to tell my story and to thank you for your steadfast leadership on Alzheimer’s disease issues.

As my business continued to fail, I was approached by the Archdiocese of New York and offered a job as an architectural consultant covering a 60-parish territory. I closed my practice and went to work for the Archdiocese. Although I was devastated by having to close my business, I was relieved to be getting out of that high-pressure situation. At first, I was doing well in the new job, but then I began having trouble. I missed appointments, couldn’t finish assignments, and began getting lost in familiar communities. My supervisor became aware of my missed appointments and poor performance, and about 18 months after I started, he called me into his office and suggested that I see a doctor about my

My story actually began almost a decade ago. In the early 1990s, I began to have trouble doing ordinary tasks and I started making mistakes at work. At the time, I had my own architectural ﬁrm. I employed 12 people full time, but I was struggling because the economy was bad and the country was in a recession. As a result, there was very little work available in the community and I was worried that I would

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problems. He told me that if I had a medical problem I could go on disability, but that if I didn’t get checked out, he would have to let me go because I couldn’t handle the job. I saw my family doctor immediately and he referred me to a neurologist. I had a complete medical work-up, including an MRI, many blood tests, and a memory test. Within three-to - four months the diagnosis was complete—early-onset Alzheimer’s disease. Overnight, my life was turned upside down. I lost my job and went on disability. I was declining rapidly, so my neurologist suggested that I begin taking Aricept. I noticed an improvement after I began taking the medication. I could function again and complete tasks. I felt I was starting to get my life back. I am still on Aricept, and I honestly believe that it has slowed the progression of my disease. But I know it won’t stop the inevitable.

eventually it will rob me of my independence, but I will not let it take my spirit. Instead of dwelling on what I have lost, I am focusing my attention on the activities I can still enjoy. I am a deacon in my church. I participate in a wonderful early-onset support group organized by the Alzheimer’s Association Mid-Hudson Chapter. There are ﬁve of us in the support group, and we have become great friends. The support group has also been a great resource for my wife. I still drive, although I have an agreement with my doctor that I will not drive further than 25 miles from my home. I keep maps of places I go to regularly, like the doctor’s oﬃce or the hardware store, in my car. I am perhaps one of the few men in this room who will not hesitate to ask for directions! I am also in the process of converting a New York City transit bus into a motorhome for my wife and I to take on weekend camping trips. The project is nearly completed and it has given me a tremendous sense of satisfaction. While I am still able, I want to do whatever I can to speak out about Alzheimer’s disease. I have traveled to Washington to meet with my senators and representatives, and I am testifying here today to urge you to continue the investment in research so that we can spare my children and grandchildren and the children and grandchildren of other Alzheimer families from this devastating disease. We are in a race against time and we need your help! Thank you.

“While I am still able, I want to do whatever I can to speak out about Alzheimer’s disease.” As an architect, I could do algebra and geometry in my head and calculate complicated dimensions for high-rise buildings with ease. In high school I got an almost perfect score on the New York state math exam. Today, I can’t balance my checkbook. After high school, I spent three years in the Army in a Special Operations unit. Everything had to be committed to memory. I can’t memorize ﬁve items on a shopping list now. Alzheimer’s disease prematurely ended my career and destroyed my security. It will steal my memories, and

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What You Can Do To Speak Out There are many ways to make your voice heard. If you need assistance with any of these recommendations, consider asking a family member or an Alzheimer’s professional in your community for help. These suggestions are supplied by Jennifer Zeitzer of the National Alzheimer’s Association Public Policy Office in the U.S., but are applicable internationally. ● Call your local chapter of the Alzheimer’s Association. Speak with the chairperson of the public policy committee and say, “I want to be an advocate.” Work with your chapter to determine how your advocacy efforts can be most effective. ● Volunteer with your local Alzheimer’s Association or Alzheimer’s Research Center to do press interviews. ● Write a letter to the editor of your local newspaper indicating your willingness to be interviewed for regional stories. ● Speak at health fairs in your community. ● Attend local Alzheimer’s conferences (see story on page 6) or offer to speak as a panelist.

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Congress to share the impact of Alzheimer’s on your life. Write a personal letter or if you are a member of a support group, write a group letter to your government representatives. Increase funding for Alzheimer’s research. Support community resources for families. Enact prescription drug insurance coverage for necessary Alzheimer’s medications.

MAILBOX

Dear Editor, Enclosed is a poem that you can include in Perspectives if you’d like. It’s kind of a mirror of where I’m at. Most people have decided I’m either not good company, or I’m an obligation. It’s boring and lonely and I don’t think it’s true, but maybe I’m prejudiced!

● Write a letter to your local Alzheimer’s Association newsletter editor about your experiences as a person with Alzheimer’s. ● Request a local meeting with your state representative or member of

Sincerely, Carol LaBarge

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Some time has passed since my diagnosis, And while there’s no hopeful prognosis, I’m sure you can plainly see, There’s no reason to run from me.

Research Updates Alzheimer’s Vaccine (AN1792) This fall at sites in the United States and Europe, there will be a clinical trial to examine the safety, tolerability, and eﬃcacy of an Alzheimer’s vaccine known as AN1792. AN1792 has already been tested in Phase 1 safety trials and can now move into this Phase 2 study. Many scientists think that amyloid plaque is the primary cause of Alzheimer’s. It is hoped that antibodies formed from this vaccine will prevent the build-up of amyloid or help to break down existing plaques in persons with Alzheimer’s. Eighty percent of the 375 participants will be immunized with AN1792. Twenty percent of participants will receive a placebo. Participants for this study must be in the early-to-moderate stages of Alzheimer’s disease. Once enrolled, the study will last approximately 16 months. The sponsor for this trial is Elan Pharmaceuticals based in San Francisco, California.

I’m easy to talk with if you’ll wait while I find a word, And I doubt you’ll find my behavior too absurd. Some thoughts may float off into space, Occasionally you’ll see a blank look on my face Signifying I’m not understanding what’s being said, Or maybe just not interested in what’s ahead. Many memories may be gone, Having run off like a frightened fawn. A new experience isn’t usually stored in my brain, So the memory won’t be called up again. But a partial memory bank as yet untouched and richly stored, Allows me to converse on some subjects with no one being bored. I still love an adventure and possess a certain grace, So please don’t relegate me to a lonely place. Keep me involved with life and surrounded by love, Even if sometimes I require a little shove. Please know I’ll be grateful as can be, That you still saw something valuable in me.

Memantine A new study of Memantine is currently enrolling 340 participants at 35 diﬀerent sites across the US. Already approved in 23 countries around the world, Memantine is a medication thought to be helpful in reducing disease symptoms and brain cell damage in persons with moderate or severe Alzheimer’s. This study will require seven clinic visits over the course of 6

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months. This is a very encouraging possibility for those persons with Alzheimer’s who have more advanced symptoms. For more information on study sites, contact your local chapter of the Alzheimer’s Association.

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Questions and Answers

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Q. I have been told that I should give up cooking because with my Alzheimer’s, it could be dangerous. Is that true?

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A. Although cooking may seem like an automatic or well-learned skill, if you have memory problems, the multiple steps involved in cooking a meal can become problematic. It is true that persons with Alzheimer’s are at risk of having increased accidents in the kitchen, speciﬁcally burning pots and pans that are forgotten on the stove. Also, for many people with Alzheimer’s, the sense of smell is decreased thus making it harder for the person to detect when food has spoiled or is no longer safe to eat. Many people who live with a spouse or family member are grateful when someone else begins to do the cooking. But, if you live alone or want to stay involved in cooking responsibilities, consider the following tips: ● Set a timer for anything you are cooking on the stove or in the oven. ● Check oﬀ each step in a recipe to keep track of the steps you have completed. Or put out all of the ingredients that you will use for the

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recipe and as you use each ingredient, put it away. Label all of your kitchen cupboards and drawers to indicate their contents so you are less apt to misplace items or put them away in unusual places. Make sure you have a smoke alarm installed near your kitchen. Use the microwave whenever possible. Although items can still be overcooked or burned, there is less risk for fire and the microwave will turn off if you have set it for a specific time. Simplify your meals or consider looking into Meals on Wheels or another home-delivered meals service to supplement your meal planning.

Q. Why do I remember things from my childhood, but I can’t remember very much about what happened yesterday? A. The hallmark symptom of Alzheimer’s disease is problems with short-term memory – that is, memory for things that have happened in the recent past. It is common to remember events that happened long before the onset of Alzheimer’s because these memories are already stored in the complex filing system of your brain. In the early stages, Alzheimer’s primarily affects the memory center of your brain known as the hippocampus. Some of the first effects of the disease begin in the hippocampus and account for your brain’s difficulty with storing new

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information. The disease begins to interfere with the steps necessary to get events, information, or experiences into storage and eventually, into long-term memory.

dementia and memory loss. We are grateful to the Alzheimer’s Association Australia for permission to reprint this article from their Newsletter of the Early Stage Dementia National Network. Hello! I am a person with dementia of the Alzheimer’s type and I’m writing to tell you of some of the memories I have of the National Alzheimer’s Conference which I had the pleasure of attending in Canberra in March of this year.

Persons with Alzheimer’s often wonder why they can remember certain current events or facts, but not others. There is some evidence that information or experiences that have signiﬁcant feelings associated with them -- either strongly positive or negative feelings -may be stored diﬀerently in the brain. These memories may receive an additional boost from the amygdala, a region of the brain involved with feelings. The memory may be strengthened by the additional processing of the amygdala and as a result, have more likelihood of getting into the brain’s storage system. In general, however, memory is complex and variable, and with Alzheimer’s, it is quite common to have inconsistencies in your short-term memory abilities.

I’m a 57 year-old female and retired school teacher. I live in Western Australia and am currently taking the drug Aricept. I flew to the Conference with two representatives from the Western Australia Alzheimer’s Association (my guardian angels) and attended the “history making” sessions with fellow memory loss sufferers. This is “history making” because I believe that this was the first time people with dementia were invited to take an active role at conferences. The 11 people in our group were a happy, friendly, and positive lot, and we spent many joyous and purposeful hours together. Amongst many topics discussed were changes necessary because of altered situations such as the new breed of persons with dementia brought about by the introduction of drugs such as Aricept and Exelon.

Alzheimer’s Association Australia National Conference: A Perspective of A Person with Dementia By Lynette Gray Editor’s note: Following are comments and feedback from the March, 2001 conference in Canberra, Australia. It was the ﬁrst time people with dementia have been actively involved in a national conference, contributing their experience of living with

Our group was provided with four computers for the duration of the conference. We were taught how to

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enter a chat room for persons with dementia where we spoke to like-minded people in Canada and the USA. I found it so exciting and comforting to be able to speak to people with similar disabilities, hopes, fears, and dreams.

Editor’s note: Alzheimer’s conferences occur locally, nationally, and internationally. Some are scientiﬁc meetings; others may be directed to professional care providers or to persons with Alzheimer’s and their families. Check with your local and national Alzheimer’s societies for conference schedules.

I loved attending our group sessions which were held in the Swan Room of the Conference Centre. I felt non-threatened and was therefore confident to voice my opinions. The sharing and caring which existed within our group gave me hope, confidence, and faith to feel that although I may have a disease growing in my brain, I’m still a worthwhile and valued person who can make decisions, voice an opinion, and be useful for both carers and sufferers in both the here and now and future.

Helpful Resources Talking with Your Doctor: A Guide for Older People Doctor-patient communication is one of the most important aspects of getting good health care. In the past, the doctor typically took the lead and the patient followed. Today, a good patient-doctor relationship is more of a partnership, with both patient and doctor working together to solve medical problems and maintain the patient’s good health. This means asking questions if the doctor’s explanations or instructions are unclear, bringing up problems even if the doctor doesn’t ask, and letting the doctor know when treatment isn’t working.

I was also able to attend other sessions of my choice and enjoyed listening to such dedicated speakers. These people who’ve been willing to give of their talents have inspired me and I’ve returned to Western Australia determined to give whatever help I can to the Western Australia Alzheimer’s Association who have been so supportive of me.

The National Institute on Aging (NIA) has updated its very popular booklet, Talking with Your Doctor: A Guide for Older People to help older people communicate successfully with their doctors. The 30-page booklet is full of tips in areas such as: ● Choosing a doctor you can talk to. ● Preparing for an appointment; giving and receiving information to

I would recommend anybody to attend a conference of this type if you have the opportunity. I learned so much and am grateful to have been given the invitation to attend.

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and from your doctor and other health care professionals. Getting started with a new doctor by sharing your medical history, medications, and habits. Talking about your health in both physical and emotional terms. Discussing sensitive subjects such as depression, memory problems, sexual function, or incontinence. The booklet includes suggestions for involving family and friends in the health care process and a list of additional resources.

of upcoming conferences and educational events, new resources, and more. Call ADEAR and ask to be on the newsletter mailing list. You do not need to make a donation to the organization, and your name will not be given out to any other organizations.

Volume 7, Number 2: November, 2001 - February, 2002 Food For Thought: The Role of Nutrition and Alzheimer’s Although it is an oversimplification to believe the old saying that “you are what you eat”, a well-balanced diet plays an important role in body and brain health. There is growing research into the influence of dietary factors on the development and treatment of Alzheimer’s disease (AD). Some of these findings point to the impact of cholesterol levels on AD while others are looking at particular foods and spices that may hold secrets to effectively treating the disease or maintaining healthy brain function.

Alzheimer’s Disease Education and Referral (ADEAR) is a service of the National Institute on Aging. ADEAR provides information to health professionals, persons with Alzheimer’s and their families, and the public. ADEAR staﬀ will: ● provide information about the latest research ﬁndings on Alzheimer’s. ● answer questions about Alzheimer’s ● tell you about drug testing and studies of new treatments. ● suggest other groups to contact for more information and services. ● send you publications about Alzheimer’s disease and related disorders. ● conduct literature searches about topics of interest to you.

The Role of Cholesterol Accumulating evidence suggests that high levels of cholesterol may contribute to AD. Cholesterol seems to aid in the production of the beta amyloid protein found in the brain plaques of persons with AD. Some studies have shown that people who take speciﬁc cholesterol-lowering drugs (statins) get

These services are free of charge. ADEAR also publishes a newsletter, Connections, a few times a year that includes updates in research, calendars

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AD at a lower rate than the general population. This leads researchers to wonder whether reducing cholesterol levels may help to prevent or treat the disease. Next year researchers will begin studies exploring using statins to treat early-stage Alzheimer’s (see page 6). Findings from a large European study should also become available and will shed light on whether statins can actually help to prevent AD. In the meantime, it can’t hurt to watch your cholesterol levels for both healthy heart and brain function.

recently, researchers have been looking at foods rich in antioxidants to determine whether they can play a role in maintaining healthy brain function. Spinach, blueberries, and strawberries are particularly rich in antioxidants and the ﬁndings from at least one animal study have suggested that a diet rich in these foods may help to reduce age-related brain deﬁciencies. A simpler method may be to take an antioxidant supplement found in many health food and drug stores. Many persons with AD are also advised to take Vitamin E supplements, but since large doses of Vitamin E can also be a blood thinner, it is important to check with your doctor before beginning any anti-oxidant or Vitamin E supplements.

The Curry Connection One of the more recent and exotic dietary ﬁndings suggests that tumeric, a spice found in east Indian curries, may help to reduce levels of the damaging beta amyloid protein. Previous studies have observed that elderly people living in villages in India have a lower incidence of Alzheimer’s than those living in most other regions of the world. Curry is a staple of the Indian diet and turmeric is one of the main spices in curry. Turmeric contains a compound called curcumin which has both antioxidant and anti-inﬂammatory properties. In preliminary animal studies, rats fed diets rich in curcumin had reduced levels of beta amyloid, reduced Alzheimer’s related

Antioxidant-rich foods Some studies suggest that lifelong accumulation of free radicals in the brain may be linked to brain cell damage and Alzheimer’s disease. Free radicals are molecules produced by the body that may have certain benefits, such as fighting infection. Too many of these molecules, however, can injure brain cells, leading to a process called “oxidative stress.” Antioxidants can reduce oxidative stress and may be beneficial in preventing or treating AD. Well-known antioxidants include Vitamins E, C, and beta-carotene. More

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inflammation in the brain, and healthier synapses. Synapses connect brain cells and are essential for memory function. There is considerable loss of synapses in AD. Scientists hope to study curcumin (also found in another common curry ingredient, ginger) through clinical trials to determine whether these encouraging outcomes can be replicated in humans lose weight. Although not all weight loss is cause for concern, persistent unintentional weight loss can weaken the body leading to fatigue and loss of overall strength, increased confusion, and a lowered immune system response. Weight loss can happen for many different reasons including nausea or gastrointestinal problems from drugs like Aricept or Exelon; decreased sense of smell and taste that affects enjoyment of food; loss of appetite sensation; forgetting to eat; feelings of sadness or depression that make a person disinterested in eating; decreased attention span that limits ability to focus on a meal long enough to eat it; or difficulty with all of the steps involved in food preparation.

appetite for more nourishing food and also throw blood sugar levels out of balance. Also, some people with AD withdraw from previously enjoyed activities and become more sedentary. A person may eat more out of boredom and this combined with decreased activity can result in weight gain. It is also not uncommon for persons with a memory problem to forget that they have just eaten and as a result, they start right up again! The following are some general tips to maintain healthy and safe eating habits: ● Some people ﬁnd that snacking on many small meals is easier and more satisfying than three big meals a day. Keep healthy snacks available including fresh fruit, crackers and cheese, yogurt, and any other kind of satisfying ﬁnger food that does not require much preparation. ● If you live alone, consider meals-on wheels or another home-delivered meal service. This will ensure that you receive two balanced meals a day and limit food preparation. Date containers of leftovers before refrigerating. Do not keep left overs for more than a few days and make sure to check the refrigerator regularly for spoiled food. ● Keep medicines, vitamins, and nutritional supplements in a pill organizer (available in drug stores) in order to avoid missing or doubling up on daily doses.

Some people with Alzheimer’s do gain weight and while this is not generally as dangerous as signiﬁcant weight loss, it can be a sign of poor eating habits. For reasons that researchers don’t fully understand, many people with AD have an increased sweet tooth and may be drawn to cookies, candies, and ice cream. Although an occasional treat is harmless, excess sweets can dull the

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● Dehydration can increase confusion or disorientation. Caffeine is a diuretic (makes the body lose water) so if you are a coffee, tea, or cola drinker, make sure to replenish your fluids by drinking plenty of water, juice, or herbal tea. ● If your loved one does most of the cooking, try to stay involved by washing the produce, stirring the soup, or tossing the salad. These activities can increase your interest in food and also help to maintain important coordination skills. ● Try to eat meals in a quiet, pleasant environment with few distractions.

The past few years have seen the number of support groups for persons with AD grow around the world. More individuals are becoming advocates and speaking at regional, national, and international conferences. In the United States, a record number of persons with AD attended the annual public policy forum in Washington to advocate to Congress for more services and research funding. Every step that each individual, family, and organization takes moves us forward in our attempts to unite as a global team to enhance the quality of life and dignity for persons living with Alzheimer’s. We value all correspondence to Perspectives and hope that we can continue to serve you in providing this forum along the way. We wish all of you a peaceful and satisfying New Year and look forward to another year of dialogue.

MAILBOX Dear Readers, As Perspectives moves into its seventh year of publication, we would like to thank you for your continuing interest and contributions to the newsletter. Perspectives was born out of the concern that with earlier diagnosis of the disease, there were few forums for persons with Alzheimer’s to have their concerns addressed directly and few outlets for them to have their thoughts, feelings, and perspectives heard. Seven years later, we can say that around the world, important changes are taking place that mark a growing movement in acknowledging the needs and invaluable contributions of diagnosed individuals.

Sincerely, Lisa Snyder and Robyn Yale

Helpful Resources: Beginning to Make Sense: A Guidebook for Persons in the Early Stages of Alzheimer’s Disease and Their Caregivers By Cordula Dick-Muehlke, Ph.D We frequently hear from persons with Alzheimer’s that although there is a wealth of informative literature available about the disease, it is all written for the caregiver with very few

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references that speak directly to the diagnosed person. In Beginning to Make Sense Cordula Dick-Muehlke, Ph.D. has authored a 32-page booklet that is written to persons with AD and addresses common concerns expressed by individuals and their families in the early stages of the disease.

of family concerns can serve to spark communication between persons with AD and their loved ones as they face the early stages of the disease together.

Ageless Design: An Innovative and Informative Web Site Mark Warner, author of “The Complete Guide to Alzheimer’s Prooﬁng Your Home” and his wife Ellen maintain an innovative and informative web site for both persons with Alzheimer’s and their families. Their free “headlines” service scans the news media daily to bring you important news items about AD. A summary of each article is provided with an opportunity to click onto a link to the full article. This is an excellent service to keep interested readers up-to-date on advances in AD.

The booklet provides a basic overview of AD and also describes some common emotional reactions to the diagnosis. A section entitled “Coping” reviews potential responses to the disease from persons diagnosed, family members, and friends. The strategies for eﬀectively addressing these responses are unnecessarily divided into those for persons with AD and those for caregivers when all of the author’s helpful strategies are really applicable to both groups. The section on “dementia basics” is well organized and the illustrations are a helpful addition. A section on “challenges and blessings” is heavily swayed to the challenges but covers important topics such as driving, intimacy, living alone, and communication. The author’s discussion of treatments and resources provides a useful summary of many types of medical and social interventions and could be very helpful to spark discussion with your doctor about possible treatment options. Throughout the booklet, Dr Dick-Muehlke writes in a respectful and direct manner. Although written to the person with AD, the booklet’s inclusion

This web site also provides links to the Warners’ Alzheimer’s store where they have a number of interesting products for sale including memory aids, gift items, clothing, books, and other materials geared to persons with AD and their families. The website also provides an online newsletter with helpful and informative articles.

A Message to Family Members and Friends By Members of the North/Central Okanagan early stage support groups of British Columbia, Canada

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local retreat setting for the weekend of social support and more in-depth sharing. Among other things, group members discussed the need to convey to their families some of their experiences and concerns about living with Alzheimer’s. They composed the following messages. These and other thoughts are outlined in the booklet they authored that is referenced below. They share these thoughts with readers now in the hopes that their messages may be of help to other families, too.

Editor’s note: Many individuals with Alzheimer’s have commented on the importance of their participation in a support group. Although many communities do not yet provide this program for persons with the disease, there is a growing movement that is recognizing the power and therapeutic beneﬁt of these programs. Support groups provide an opportunity to share concerns and feelings of camaraderie with peers in a safe and non-judgmental environment. Members of the North/ Central Okanagan support groups in British Columbia meet once a month for up to two hours of sharing and support. Although the group is facilitated by an Alzheimer’s Society staﬀ member, support group participants are instrumental in determining the topics of discussion and lead the group themselves by initiating conversation and sharing.

Reprinted with permission from: “Memory Problems: Find Out How These Problems Aﬀect People Diagnosed with Alzheimer’s Disease and Related Dementias.” This 15-page booklet is written by members of the North Central Okanagan early stage support groups of the Alzheimer’s Society of British Columbia. Please don’t correct me. I know better but the information just isn’t available to me at that moment. Remember, my feelings are intact and I get hurt easily. I usually know when the wrong word comes out and I’m as surprised as you are.

As an outgrowth of this successful support group experience, Phyllis Dyck, regional representative for the Alzheimer’s Society, organized a weekend retreat for the support group participants. Over 10 persons with early-stage Alzheimer’s gathered at a

I need people to speak a little slower on the telephone. Try to ignore oﬀhand remarks that I wouldn’t

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have made in the past. If you focus on it, it won’t prevent it from happening again. It just makes me feel worse.

Research Updates Funding for new drug studies The National Institute on Aging (NIA) recently awarded 54 million dollars to support the Alzheimer’s Disease Cooperative Study (ADCS). The ADCS is a network of medical research centers and clinics dedicated to improving methods of diagnosing, treating, and preventing AD. Organized in 1991, the network has expanded to include 83 sites located across the United States and Canada that are coordinated by Dr. Leon Thal of the University of California, San Diego. In the next ﬁve years, this network of researchers plans on conducting a number of exciting clinical trials including:

I may say something that is real to me but may not be factual. I am not lying, even if the information is not correct. Don’t argue, it won’t solve anything. If I put my clothes on the chair or the floor, it may be because I can’t find them in the closet. If you can anticipate that I am getting into difficulty, please don’t draw attention to it but try to carefully help me through it so nobody else will be aware of the problem. At a large gathering, please keep an eye on me because I can get lost easily! But please don’t shadow my every move. Use gentle respect to guide me.

Cholesterol-lowering statins As discussed in our cover article, there is some evidence that high levels of cholesterol play a role in the development of AD. The ADCS will be enrolling persons with mild-to-moderate AD in a one-year study to determine whether a cholesterol- lowering drug can slow down the progression of the disease.

Sometimes you give me the message that you think I am faking these problems. What you don’t see is my terrible confusion and my hurt knowing how you feel. I don’t mean to frustrate you. I know you get impatient and tired of telling me things three times in a row. Please be patient.

A new antioxidant Our nutrition article also discussed the beneﬁts of antioxidants in the maintenance of healthy nerve cells (neurons). In preliminary research, a lesser-known and very potent antioxidant, indole-3-Propionic Acid (IPA) was found to help inhibit the formation of the amyloid plaque. An

Ask me what I think or want. Don’t assume that you know. Believe I still love you, even if I am having trouble showing it.

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ADCS study will evaluate whether IPA is safe and well-tolerated by persons with AD.

California, San Diego and the Mayo Clinic in Jacksonville, Florida, recently demonstrated that NSAIDs may not only cut down on inflammation in the brain, but perhaps more importantly, they may actually work to inhibit the production of the damaging protein found in the hallmark plaques of AD. And findings from a highly regarded study in the Netherlands reported that middle-aged and elderly people who took NSAIDs for at least two years developed AD at a significantly lower rate than those who did not take the drugs. Next year researchers will be conducting more investigations to determine safe and effective doses of NSAIDs for the possible treatment of AD.

High dose folate/B6/B12 supplements: Research has shown that blood levels of homocysteine (an amino acid) may be elevated in persons with AD. Researchers are not certain why this increase occurs, but the ADCS will conduct an 18-month trial designed to test whether reducing homocysteine levels with the high dose vitamin supplement can slow the progression of AD. Anti-inflammatories revisited In the past few years, the media has reported on various studies that have examined the role anti-inflammatory medications may play in helping to prevent or slow down the progression of AD. Scientists know that there is evidence of inflammation in the brains of persons with AD and some individuals who have taken non-steroidal anti-inflammatory drugs (NSAIDs) over a long period of time have shown a reduced risk of developing AD. But high and long-term doses of NSAIDs can have very serious and uncomfortable side-effects for some people and there has not yet been enough evidence to justify prescribing NSAIDs to treat AD.

Building the Partnership – Speaking with Your Doctor By Matthew Dubiner Editor’s note: Matthew Dubiner is diagnosed with Alzheimer’s disease (AD) and serves as chair of the Long Island Alzheimer’s Foundation (LIAF) Client’s Council in Port Washington, New York. We are grateful to LIAF for their permission to reprint Mr. Dubiner’s article from their September 2001 LIAFLine newsletter. Each of us is a quilt of sensitivities and sensibilities. A doctor is no exception. Though he is a caring soul seeking to soothe and heal, the expression in a physician’s eyes, his body language, and indeed, every aspect of his demeanor can sometimes engender confusion, fear,

Findings from new studies, however, are reopening the NSAID investigation. Researchers at the University of

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and anger. Therefore, it is our (the patient/client’s and the caregiver’s) obligation to help the physician be mindful of his bedside manner. With the diagnosis of AD there is more than enough pain. We must educate ourselves as to the who, what, where, when, and why of speaking with doctors for they are our partners.

suggestions he offers because trusting each of these to memory is not a good idea. Added to this is the simple truth that all too often we hear what we want to hear. Keep a record for yourself and if there is still some aspect of the process you do not understand, ask more questions until you do. Strengthen your partnership with the physician by becoming a learner. First and foremost, gain an understanding of the medications being prescribed, their effectiveness, and their possible side effects. Inquire as to the availability of other medications, treatments, and where the most up-to-date research available to the public can be found, including journals and websites on the internet.

One word defines any effective relationship with doctors particularly in the world of AD: communication. If there is a reason to believe a memory problem exists, we should act as soon as possible and provide the doctor with more than general impressions. Writing your observations, listing your concerns, and then rephrasing them as questions accomplishes this. Accompanied by a complete medical history, offer as many details as possible, otherwise the physician cannot make an accurate assessment and may not even think to consider AD. Be straightforward and candid, not timid and tentative. Continually ask questions and offer your thoughts and concerns until you understand. Do not hesitate to press for more of his time and if not completely satisfied, seek a second opinion. In the process of diagnosis, testing often becomes the defining tool. Your doctor should inform you of the purpose and procedure for each test and when completed, discuss the results with you and how they are interpreted. You should continue chronicling the explanations, observations, and

At all times, you should stand up for yourself or, as I would, substitute this idea, “I’m not dead, so why am I being ignored?” If your doctor is making you feel uncomfortable, let him know. This is particularly true for the patient. Considering the nature of AD the doctor may direct his words to the caregiver. Most likely, he/she is not consciously excluding the patient, but the patient and the caregiver should not hesitate to speak up and voice concern and displeasure. The emotional and physical toll of AD upon the patient and caregiver is tremendous. If you have a feeling of being overwhelmed or incapable of

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comprehending, inform your doctor and/or request another appointment in the near future. By blending the essential ingredients of cooperation, trust, and communication, the partnership of patient, caregiver, and doctor can and will thrive.

Concern About Impact of AD on Family Although some persons with AD live alone, most have contact with a primary support person such as a spouse, partner, son, daughter, or relative. It is not uncommon to have some fear about the impact of AD on these loved ones. One woman expresses concern about her husband and states, “I worry that he'll resent me. He'll probably get tired of taking care of me and I wouldn't want to be a burden to him. I wouldn't want him to have to go through that.” Although many individuals are aware that their loved ones have assumed more responsibilities, some persons with AD express little concern about any impact of the disease on family and are surprised by the thought that it could have a signiﬁcant eﬀect on them. It can be helpful to have a discussion with family members about the impact of AD on all of you. Try to work together to... that would be helpful in lessening any stress.

Volume 7, Number 3: February, 2002 – April, 2002 Family Relationships There are few things more inﬂuential in our lives than our relationships with family. Many persons with Alzheimer’s disease (AD) talk about the importance of these connections. Memory loss and other symptoms of the disease can bring changes in family relationships and it is not uncommon to hear certain themes arise as people with AD discuss these issues. As you read this article, you may want to think about which themes relate to you, or how you would respond to the messages expressed by your peers.

Making Adjustments With AD, each member of the family may have to make some adjustments. Every-one has to learn about the unpredictable and often frustrating experience of memory loss. This can take time, and not everyone may adjust at the same rate. As one man with AD recently told his social worker, “Will you please remind my wife not to forget that I forget?” And in his book “Partial View”, Cary Henderson writes, “My

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wife very often wonders why I do things and say things I do and I’ll be darned if I know.”

feel like it's topsy-turvy but that's the way it has to be.” Although some people ﬁnd these shifts upsetting, others feel more resigned to the changes. One man who is very grateful for his caring daughter says, “There’s nothing much that you can do if you have this disease. You have to let someone support you.” Are there role changes that are occurring in your family? If so, how do you feel about them?

A support group can be a valuable resource for you and your family in helping all of you better understand the symptoms of AD. It is important to talk with others who are experiencing similar circumstances. The camaraderie and sharing can help to ease the adjustment process. Call your local chapter of the Alzheimer’s Association to see if there are programs available in your community for families facing early stage AD.

Loss of Independence In addition to the increased need to rely on others, some people with AD feel a loss of independence and ability to make decisions about day-to-day matters in their lives. Sometimes it can be a relief to let someone else be of assistance. Other times, unwanted help can feel like an intrusion. Family members often need to ﬁnd respectful ways to communicate with one another through these changes. As one woman interviewed in the video “Alzheimer’s Disease: Inside Looking Out” states, “I’m not a loaf of bread that you can pick up and put there or pick up and put there. We will talk about it. I will listen but you must talk with me about it so that I can make an informed decision. It’s my decision.”

Shifts in Responsibilities and Roles As care needs shift, there are also changes in relationship roles for both the person with AD and their loved ones. In his book “My Journey Into Alzheimer’s”, Robert Davis writes, “My wife, Betty, and I have been married for almost thirty years. During this illness our roles have changed. Suddenly she is not only the wife I have loved, but she is also my caregiver. She has to guide me through daily living as I have become a care receiver, unable to fully care for myself.” Sometimes role changes are particularly challenging with one’s children. Interviewed by Lisa Snyder for the book “Speaking Our Minds”, a father diagnosed with AD in his early 50’s comments about his sons, “They used to learn from me and now I have to learn from them. I don't really like it. I

The Value of Humor Humor can provide a tremendous source of relief and stress reduction. Laughter among family members and friends can brighten up dark moments

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and often leads to a more relaxed and hopeful feeling. Members of a support group in the San Francisco Bay Area advise their family members: “Have a sense of humor; it helps us to lighten up about things we may have trouble with.” And speaking recently to his wife, one man said, “It’s OK to have a sense of humor. People with Alzheimer’s do some pretty funny things sometimes!”

family as well as trusted friends or professionals. If you have children or grandchildren, make sure that they have the information they need to understand the changes you may be experiencing. Have fun together! Sometimes relationships begin to revolve around responsibilities and obligations and families lose sight of the value of recreational time together.

Although humor can be very therapeutic, some persons with AD advise their families and others to be sensitive about the use of humor. Members of the Rocky Mountain Support Group in Colorado suggest that humor is not helpful if it is making fun of someone or if it leaves someone feeling left out. Each family has its own style of humor and many persons with AD retain a good sense of humor even into the advanced stages of the disease. Do you and your loved ones share a sense of humor together? Is it helpful? Is it ever hurtful?

Be open to new people entering your life. You may find that a few key friends or staff from community organizations serve as extended family members and help to build the supports needed during stressful times. If you are having conflict or difficulty communicating with family members, call your local Alzheimer’s Association for a referral to a social worker or family counselor who can help you and your loved ones discuss concerns.

Suggestions to Consider Plan together for the future. Do legal and ﬁnancial planning now so that your wishes can be carried out. Also plan enjoyable activities or trips that your would like to do together.

Never underestimate the tremendous value of expressing your caring for one another as well as your gratitude for the ways that you may be working together day-to-day. A simple heartfelt “thank you” is a valuable message.

Determine your support team – who you trust to help you and to ﬁll in for your memory loss as needed. Include

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MAILBOX

Research Updates

Dear Editor, Thank you for Perspectives. I look forward to each issue. As the facilitator of an early- stage support group, I highly recommend it to all of the members. We frequently discuss the articles. I also recommend Perspectives to professionals who come to me wanting to learn more about AD. I don’t think there is any better way to learn than from people who are living with the disease. Thank you for broadening our understanding of AD.

The Vaccine Study Elan Pharmaceuticals has stopped giving shots of their experimental AD vaccine (AN-1792) to participants in their world-wide study. Although animal studies and early human safety studies suggested the vaccine was reasonably safe, fifteen of the 360 participants in this current study developed a serious brain inflammation. The cause of this inflammation is being investigated thoroughly and at present, the affected participants are in stable condition. This is a significant set-back for the vaccine trial, but some researchers remain optimistic that stimulating the immune system to target the beta-amyloid protein could work safely.

Peggy Bargmann Alzheimer’s Association Central and North Florida Chapter

Alzheimer’s Association 14th Annual Public Policy Forum April 27-30th, 2002

Gene Therapy Update In past issues, we have reported on the gene therapy study which involves a novel form of brain surgery to implant genetically modified cells into the brains of persons with mild AD. In preliminary studies in primates, this therapy was effective in helping to prevent brain cell death in areas damaged by AD. Now being evaluated for safety in humans, the gene therapy study continues with four out of the eight participants having completed surgery without problems. The next two participants will have surgery in March followed by the final two in June.

The Capitol Hilton, Washington, DC Last year a record number of persons with early-stage AD participated in the Alzheimer’s Association annual public policy forum in Washington, DC. Call your Alzheimer’s Association chapter to learn more about this important event. If you can’t attend, consider writing a letter or making a call to your representatives in Congress to advocate for more funding for research, public education, and increased services for persons with Alzheimer’s and their families.

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Memantine Alzheimer’s disease causes many changes in the brain over time. Some brain chemicals are reduced while others become overactive. Memantine is a promising drug that calms the brain activity of an overactive chemical called NMDA. In clinical trials, Memantine was very well-tolerated and slowed both functional and mental decline in persons with moderate-severe AD. Forest Laboratories is applying for US Food and Drug Administration approval of the drug this year. If approved, Memantine will be the ﬁrst drug aimed at slowing symptoms in the more advanced stages of AD. Memantine has already been recommended for approval by the European Union committee.

with communication problems, social stigma, and isolation.” They also expressed the need to learn more about the disease. Individuals drew strength from relationships with loved ones and also expressed hope that there will be more eﬀective treatments or a cure for the disease in the future. To address some of the concerns and needs expressed by respondents, the Alzheimer Society of Canada published a booklet entitled “Shared Experiences: Suggestions for Those with Alzheimer’s Disease.”

Canadian Focus Groups The Alzheimer Society of Canada recently conducted a series of focus groups with persons with early-stage AD. Respondents participated in early-stage support groups in communities across Canada or responded through an online survey posted on the Society’s web site. The research marked an important step in attempting to identify issues that matter most to persons in the earlier stages of the disease. According to ﬁndings, people with AD “place a high value on receiving a diagnosis in a compassionate and informative way, on maintaining their independence for as long as possible, and on ﬁnding ways to deal

A. The term “sundowning” is used to describe the restless, confused, or anxious feelings some persons with Alzheimer’s experience during the late afternoon or early evening. This time of the day when the sun goes down and darkness sets in can be particularly disorienting or unsettling and can create problems for both the person with AD and the one trying to provide assistance. Although there is no scientiﬁc reason for sundowning, there are some possible inﬂuences that contribute to the problem:

Questions and Answers Q. What is “sundowning?” I saw the word in an Alzheimer’s pamphlet and understand it can be a symptom of the disease.

Sometimes AD aﬀects peoples’ ability to interpret what they see. Changes in light can produce shadows or dim

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conditions. Shadowy shapes may look like people or dimly lit rooms may look unfamiliar in the fading light. This can be frightening or disorienting.

soft music, or helping to prepare the evening meal may help to pass this transition time more smoothly. ● When climate allows, some people ﬁnd that an evening walk or slow drive around the neighborhood eases some of the restless feelings. If you experience these sundowning symptoms, it is very important to have some-one with you during these outings for both companionship and safety. ● If you or your loved one notice that problems persist, contact your doctor. Sometimes medicine can be helpful for sundowning symptoms.

AD can be tiring for both the diagnosed person and their loved ones and towards the end of the day, not many people are at their best. Fatigue can increase irritability and confusion for the person with AD. If we think about our previously familiar routines, the time around sundown may have been a time of transition. Many people were accustomed to leaving work and heading home or may have been busy preparing a meal for a family coming in from a day at work or school. Although activity changes over the years, memories of these patterns can be deeply ingrained and lead to a feeling of increased restlessness or anticipation at sundown.

Q. I recently heard that many people with Alzheimer’s lose their sense of smell. Is that true? A. It is true that loss of the ability to smell or identify odors can be a very early symptom of AD. In your brain, smell is controlled by the olfactory bulb. This bulb is next to the hippocampus, the region of the brain largely responsible for memory. This region is struck hardest by the onset of AD. Some researchers think that the close proximity of these regions of the brain may account for losses in smell that may begin before the more noticeable symptoms of memory loss. Other reasons for loss of smell not related to AD could include a history of smoking or chronic sinus problems.

Sundowning can be unpredictable. Some days may be just ﬁne, while others bring on anxious feelings. If you experience any of these symptoms, consider the following suggestions: ● Try to keep your home well-lit as evening approaches. This can help with the transition from daytime to nighttime. ● Do not take on challenging activities in the later part of the afternoon or evening. A quiet visit with a friend,

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things when one took the time to list them, to name them one by one.

Reﬂections on Relationships Key Ingredients By Chip Gerber Editor’s note: Chip is 56 years old and resides with his wife in Canton, Ohio. They have been married 26 years and have two adult daughters and seven grandchildren. Chip worked for over 25 years as a licensed social worker and guardian for dependent senior adults and also persons with developmental disabilities. The following excerpt is from Chip’s online journal

I think we can take this same type of thinking and use it to our advantage as one spouse or the other steps up to be a caregiver. Why did I fall in love? What has kept us together all these years? What are the strengths and weaknesses that each of us brings into this relationship? As one's reality changes as well as the ability to do things as he or she once did, what must change to keep the relationship intact? As one becomes less tolerant due to disease, being out of control, or being more irritated, what must be done to keep us together? We must also take into consideration our personalities and the way we have always been. As we get older and in more diﬃcult situations, it is unlikely that these will change, at least in the one that is the caregiver. Change in the aﬀected is one of the things that we can count on.

Is your home a battlefield of wills ---yours and the affected? On occasion I hear about how unbearable some situations are. As one who is affected myself, this is always sad to hear about. Life is too short to live like this. There are casualties in every battle. For some, perhaps marriage has always been a battle; perhaps it has never been happy or satisfactory. But for others, it is an ongoing, new experience. The couples are not used to cross words, irritability, hurt feelings, acting out, etc. In my marriage, although we are opposites, we were attracted to each other. Where one was weak, the other was strong and we worked with the weak areas, both of us having a few. No marriage is perfect. Flexibility and forgiveness had to be a key ingredient that kept us from the casualty list. With all the marriages failing all around us, we had to know what kept our marriage together. And there were so many

To me there are some key ingredients to this recipe. They are ﬂexibility, support, faith, respect, wanting one's best, caring

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for oneself, and getting necessary support for both individuals. Medication for those involved is also necessary and timely. Easier said than done, but perhaps goals for us. I refuse to live on a battleﬁeld. Peace and a safe haven for both of us has always been a necessity and still is. We need to do what's necessary to guarantee that this continues in our home.

The caregiver is well meaning in trying to protect their loved one from any harm to themselves physically and emotionally. Alzheimer’s is a disease with no guidebook and no common ground. Each person may experience different symptoms. It has been learned that the difference can lie in which part of the brain is affected. This makes it difficult for those affected and their caregivers to draw support, advice, and answers. Thus the frustration. As each loss occurs and the line is crossed, I am reminded of a lesson my mother taught me. It was helpful in raising my children. Don’t take something away from a baby unless you have something to offer him in exchange. Before you take the scissors away from him, be prepared to give a toy as compensation. The child will be content with the exchange. Perhaps there would be motivation if there was an alternative to the losses.

An Old Lesson Relearned By Linda Raymer Editor’s note: Linda Raymer has early-onset Alzheimer’s and resides with her husband in Michigan. Linda has written many essays about her experiences with AD. The following one provides an important perspective on the impact of AD on relationships. There is a fine line between realizing I must give up a certain part of my life in order to make my life easier and giving up everything entirely. On one side of the line, it is only one small thing. Stop driving. Limit social gatherings, household projects, and hobbies. Each small occurrence by itself is not significant. It is a small sacrifice. It occurs so gradually that it is not noticed. Eventually the line is crossed and nothing remains. Therefore, there is no motivation. The person with Alzheimer’s disease wonders why they have no motivation. Will this feeling pass? Is it a symptom of the disease? It could be misinterpreted as depression.

An additional line would be in order – a line of communication between many struggling persons with Alzheimer’s disease and their loved ones. I am certain it would add productive and functional years to their lives.

A Helpful Resource We wrote about research conducted in Canada to determine the needs and interests of persons with early-stage AD. Some of these research results were

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obtained from individuals who made their voices heard on the internet through the Alzheimer Society’s web site at http://www.alzheimer.ca. This web site includes an important section called “I Have Alzheimer’s Disease” where those diagnosed can obtain helpful information and network with other persons with AD. Under this section, the Society has made available online their booklet “Shared Experiences: Suggestions for Those with Alzheimer’s Disease.” This booklet can be listened to in an audio version and includes such topics as Living with AD; Experiencing a Variety of Emotions; Telling People; Learning About the Disease; Focusing on What You Can Do; Exploring Treatment Options; and Planning for the Future.

Volume 7, Number 4: May – July, 2002 The Alzheimer’s Survivor Some Thoughts on Being an Alzheimer’s Survivor Through the Eyes of A Person Diagnosed Early With the Disease By Thaddeus Raushi, Ph.D. The term “Alzheimer’s survivor'' is not a common term. We hear of cancer survivors or survivors of a surgery. We talk about survivors when there is a loss of a loved one or when someone walks away from an automobile crash. Yet, we don’t hear about surviving Alzheimer’s disease (AD). How can someone be considered a survivor when we know AD is incurable? I’d like to suggest that there are Alzheimer’s survivors. For me, surviving is both attitude and action. It means that even while knowing that I have this disease, I can still go on with life always doing the best I can with what I have at any given point. This is the attitude of seeing life worth living. This is also the action of moving ahead with doing whatever is quality living at that moment.

This web site also has a section entitled “Creative Space” where persons with AD can share writings or artwork. Although many of the writings seem to have been done by loved ones caring for someone with AD, there are a few essays by individuals diagnosed with a dementia and the site welcomes more contributions!

Merriam-Webster dictionary defines survive first as “to remain alive or in existence; live on and further defines the word as “to continue to function or prosper despite.” Well, that is exactly what life after diagnosis can be for

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someone in the early stages of AD. To survive can mean to “remain alive”, to “live on” even when the trauma of the disease begins to impact on one’s life. To survive can mean “to continue to function or prosper despite” the losses that begin to take place in a person’s life. With or without AD, we all share in survival in some way together. When we think about it, who of us can be assured that we will live on for a very long time? Who of us can guarantee no major struggle as we progress through life? Survival then is in some way for all of us Webster’s “to remain alive or in existence: live on, and to continue to function or prosper despite.” For those of us with AD, survival has added dimensions.

know that when I experienced serious gaps in remembering, conversation problems, making strange judgments, life was frustrating as well as confusing. This thinking and these ways were not like me. I didn’t know if I was simply becoming lazy in my thinking, burning out in my work, or having some sort of break down in normal living. The diagnosis made sense out of what was happening in my thinking and actions. Now I could survive by learning new dimensions of living and ways of experiencing quality of life. Second, as a survivor, maintaining this quality of life included both drawing on resources available to me as well as using myself as a resource to others. Helpful resources have included information about the disease, support services, and a support group of the regional Alzheimer’s Association, and books about and by those with the disease. Even though reading has become a new challenge for me, I ﬁnd that I read all I can about the disease. Becoming a resource to others is also a part of being an Alzheimer’s survivor. For me this has involved doing volunteer work with my regional Alzheimer’s Association. Writing is another way of sharing my story of this experience for the beneﬁt of others. As an Alzheimer’s survivor, I have no reason to hold back or to be ashamed of having Alzheimer’s. I am open to sharing what is happening in the experience and advocating for a better

I would not choose to have AD. When diagnosed at age 57, I felt that way and still do. Who would feel diﬀerently? With the same breath though, I would say that I am thankful to have come to learn early that I have the disease as opposed to struggling until a later diagnosis. Early diagnosis allows me to be an Alzheimer’s survivor rather than one who gives in and gives up the experience of living, or one who arrives at a late diagnosis when little control of life can be managed. Early diagnosis can give a person with dementia the opportunity to live a life of quality. First, early diagnosis can lead to making sense out of some mental problems that before diagnosis are confusing and sometimes dangerous. I

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understanding of the disease. For me, this participation is part of living as a survivor.

have a choice to stay in that place or move on. In moving on I accentuate those abilities and qualities that I do have and also work at using them to compensate for ones I do not have. This might be considered making adaptations, a type of rehabilitation. For example, I don’t put myself in situations in which I know I will become frustrated, yet at the same time, I try to stretch myself out to new events or activities in my life experience. SO this gift of time creates an opportunity for me to choose what I want to do in my life. How this happens can be diﬀerent for each of us. Yet to have the view of early diagnosis as a gift of time and an opportunity is part of being an Alzheimer’s survivor.

Third, knowing early on that one has AD allows the individuals to use many capabilities that may not exist in later stages of the disease. Such capabilities can allow the person with the disease to be fully involved in long range planning with regard to ﬁnancial, health, family, spiritual, and personal issues. This planning is part of the Alzheimer’s survivor life.

Fourth, having the gift of time also allows the individual to take advantage of drugs which have shown to have some impact on disease progression. I am thankful that my neurologist has prescribed Aricept which I take daily. He also strongly recommended Vitamin E which I also take faithfully. I believe these have been of help. There is a clear advantage to knowing of the disease early in its existence to be able to have access to medications available today. This is another facet of being an Alzheimer’s survivor.

I also continue to take advantage of my capabilities to build on what I can do and not simply bemoan what I can’t do. Certainly I miss the abilities that I am losing; daily I am reminded of the losses. And I am not always full of cheer and energy. Some days I am down and disappointed and not full of life. Yet, when I am down, I allow myself to feel this way; I don’t try to pretend the feelings aren’t there. To do so would not be true or healthy. But I

Finally, I also feel that to know about AD is to help “Put it on the shelf” when needed. That is, to he a healthy Alzheimer’s survivor is to have a life

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outside of the disease. AD can become all consuming for the person with the disease as well as the person’s care partner. During the early stages, the individual cam care partner can give attention to how to incorporate in their life interests, activities, and friendships outside the AD experience. Putting the disease on the shelf may involve learning how to take time away from the disease issues in one's own thinking or it may involve the person with AD and the care partner taking time away from each other. Shelving the disease may include getting involved with hobbies, exercise, or travel, or ﬁnding personal peace and enrichment through spiritual enrichment, quiet time, music, or reading. Putting AD on the shelf is not an easy task by any means, but one which is most important.

the progression of the disease. We want to remain believing that we are at any time in our relationship and decision making, doing the best we can with what we have. The idea of someone being an Alzheimer’s survivor is not meant to make the experience a gloriﬁed fairy tale way of living with a disease that slowly unravels one’s thinking and behaviors. But rather an Alzheimer’s survivor has to do with living a quality life. Being a survivor of Alzheimer’s has to do with living with all of the richness and energy, hope and joy that can be a part of life. Being an Alzheimer’s survivor is always living life doing the best we can with what we have at any point in time.

New Resources Two new books help to provide readers with insights into the experiences of persons with Alzheimer’s disease.

As an Alzheimer’s survivor, I have no reason to hold back or to be ashamed of having Alzheimer’s. I am open to sharing what is happening in the experience and advocating for a better understanding of the disease.

In A View From Within – Living with Early-Onset Alzheimer’s, author Thaddeus Raushi writes about his thoughts and experiences concerning many aspects of AD. The book is organized in a number of brief essays and reﬂections which makes it easy to read a section at a time. The author writes about topics including receiving the diagnosis and disclosing it to others, experiencing various symptoms, the processes of denial and acceptance, relationships with family and friends,

As my wife and I move forward together, we want to be able to know when to deal with the disease’s issues and when to put them on the shelf. We want to both take the changes and behaviors seriously and at the same time be able to have a sense of humor about them. We want to share our life together and at the same time not have my wife become lost and destroyed in

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spirituality, and ﬁnding ways to celebrate life in the face of loss.

from individuals throughout the text. Chapters cover topics including meaningful communication, social and family relationships, quality of life, living with symptoms, and medical experiences and concerns of people with dementia. Each chapter is based on research that the authors have done involving persons with AD and related dementias in order to bring a greater understanding and respect to both professionals and the public of the person behind the diagnosis. The Experience of Alzheimer’s is written in a more formal manner that may be too academic for general readers. But the deeply respectful and caring tone combined with the invaluable testimony of persons with AD in each of the chapters could make this book helpful reading for both professionals and families.

Throughout A View From Within, Dr. Raushi is very candid about the challenges of having Alzheimer’s, but he does not convey any feelings of being defeated by the disease. On the contrary, as a man who has experienced cancer, a brain tumor, and now Alzheimer’s, he is remarkably and genuinely resilient and oﬀers sound wisdom on how to maintain a quality of life in the face of some very tough circumstances. If you have Alzheimer’s or a related dementia, you will likely identify with many of the issues raised in this book. For some, that may be comforting; for others, distressing. But overall, there is a strong thread of hope and that weaves through the candid testimony of this small book. Dr. Raushi looks diﬃculties in the face and then goes right on living one precious day at a time.

The Person with Alzheimer’s is published by Johns Hopkins University Press and can be ordered through your local bookstore.

The Person with Alzheimer’s Disease – Pathways to Understanding the Experience is edited by sociologist Phyllis Braudy Harris, Ph.D. of John Carrol University with a prologue written by Gloria Sterin, a retired sociologist now diagnosed with AD. Although the fourteen chapters of this book are written by professionals, the book traces the experiences of persons with dementia through many aspects of the disease and relies on extensive quotes

Research Updates The Vaccine Study Elan Pharmaceuticals has stopped giving shots of their experimental AD vaccine (AN-1792) to participants in their world-wide study. Although animal studies and early human safety studies suggested the vaccine was reasonably safe, ﬁfteen of the 360 participants in this current study

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developed a serious brain inflammation. The cause of this inflammation is being investigated thoroughly and at present, the affected participants are in stable condition. This is a significant set-back for the vaccine trial, but some researchers remain optimistic that stimulating the immune system to target the beta-amyloid protein could work safely.

detection and diagnosis of AD and new studies are indicating that people with Alzheimer’s in varying stages of the disease can beneﬁt from psychotherapy, physical therapy (for lower body strengthening and mobility), occupational therapy (for managing activities of daily living such as grooming and eating), speech therapy, and other services. As a result of these diagnostic advances and the convincing arguments of Alzheimer’s advocates, Medicare will no longer use the diagnosis of dementia alone as a basis for determining payment for a requested service. Now, requests will be evaluated on a case-by-case basis and coverage will be determined on the unique needs of each individual.

Gene Therapy In past issues, we have reported on the gene therapy study which involves a novel form of brain surgery to implant genetically modiﬁed cells into the brains of persons with mild AD. In preliminary studies in primates, this therapy was eﬀective in helping to prevent brain cell death in areas damaged by AD. Now being evaluated for safety in humans, the gene therapy study continues with four out of the eight participants.

This change in Medicare policy reﬂects an important advance in our recognition that persons with AD have many abilities that can respond to various therapies, and that quality of life must be the primary focus and goal regardless of a dementia diagnosis. If you or your family think that you could beneﬁt from any of the above mentioned therapies, talk with your doctor about the options that may be available to you.

Questions and Answers Q. I heard recently that Medicare is going to be covering more treatment and services for Alzheimer’s disease. Is this true? A. For many years, Medicare refused to pay for many medical and mental health services for persons with AD and other dementias based on the assumption that patients with dementia were not capable of medical improvement. But fortunately, this misunderstanding has now been corrected. Advances in medical science have led to earlier

Thoughts on the Topic of Spirituality and Alzheimer’s In the past decade, religious leaders, doctors, and other health professionals have given greater attention to the role of religion and spirituality in coping

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with Alzheimer’s disease (AD). Some persons with AD find they have a longstanding spiritual faith or practice that they continue to draw on to help them cope. Others may not feel a connection to any one religious faith and do not feel this is an important part of their lives. They may find other sources of support or inspiration that provide meaning and encouragement. And still others might be uncertain about ideas of spirituality or may not have defined what “spiritual” or “religious” means to them or to their experience of AD. In discussions about spiritual issues with persons with AD, a number of interesting themes arise. As you read this article, you may want to consider how you would respond to the following perspectives.

particular beliefs to find some kind of reason or meaning in having Alzheimer’s. One woman says, “I pray a lot for God to give me strength and for my husband to have strength to go through this. If it’s meant to be, than it’s meant to be. As everyone would do, I wondered why me? But then I realize God knows what he’s doing and he’ll take care of me. I have to trust God.” For others, however, trying to find a spiritual meaning in their disease is not always encouraging and may also be confusing. One man states, “You can’t deal your deck. Something up there is doing it for us. There must be a reason. I think I’ve made some mistakes and I’m paying for it in the eyes of the Lord. I just feel this is what I deserve. But I don’t know what I did wrong. I pray to my God. He knows.” Others, however, do not believe in a God who has a divine plan and respond differently. One woman says, “I don’t know why this is happening. It doesn’t have meaning…If there were somebody who could control these things, then they ought to do a better job! Sloppy, sloppy work!” Do you identify with any of these statements? Is there any way that you have found meaning in your experience of AD?

Finding Meaning in Alzheimer’s

Coping with Alzheimer’s Some people ﬁnd that spirituality or a religious practice helps them to better cope with AD. The most common comments speak to ways in which spirituality provides hope, strength, guidance, or something to hold onto

Some people ﬁnd that their religious faith helps them make sense of what is happening to them. They draw on

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during tough times. One man states, “God is a foundation that I have. My faith is solid. It’s within me and it is me.” Another woman says, “I say prayer…God guides me. Tells me what to do. He’s looking out for the people I love.” Others take some comfort in the idea of an afterlife and this lessens fears they may feel about the unpredictable course of their disease.

that their faith is even stronger with the onset of Alzheimer’s. Interviewed in the newsletter “Early Alzheimer’s” Clyde says, “It is in this light (spirituality) that I understand, accept, and face living with Alzheimer’s disease. I do not blame anyone, especially God, and I’m not angry. I sometimes remind myself of a passage from the Bible that ‘God sends rain on the just and the unjust.’” While Clyde’s faith helps him to accept what is happening to him, another woman draws on her faith for basic strength. She says, “I think I have a stronger faith than before… I don’t know what I would do without my faith. It would be impossible. Alzheimer’s makes you feel so helpless.”

Religion does not play a role in coping for everyone though and strength may be drawn from other sources. Some have never relied on religion or have deﬁned their own sources for spiritual strength. One man says, “ It would be much easier if I clung to any religion. I’m sure this would be an advantage, but my mind is not going to go along with that. Religion is not what I need to get through Alzheimer’s. I told you that I got away from the oﬃce once in awhile and got up alone in the mountains…I always cried. It’s so beautiful! That is my religion. It’s the biggest piece of religion that I know.”

While some people with Alzheimer’s begin to question their religious faith, others ﬁnd that their religious faith and practice is not disappearing as much as it is changing with the eﬀects of memory loss or other symptoms of Alzheimer’s. A faith based community is a very comforting source of support to some, but others feel a bit more disillusioned with God or their place of worship and may reconsider their previous religious practices. One man says, “When you go to church and you get on your hands and knees and your praying and you think God’s going to take care of everything, but it doesn’t happen. You still have Alzheimer’s or whatever you

Does any form of spirituality or religious practice help you to cope with AD? If so, how? Eﬀect of Alzheimer’s on Spiritual Faith or Practice Common themes that arise during discussion of spirituality include ways that Alzheimer’s has had a positive or challenging impact on one’s faith or religious practice. Some people ﬁnd

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have.” And in his book “Partial View”, Cary Henderson writes, “I did stop going to church – the biggest reason well there were two reasons – one of which I am not really enamored of a God who creates something like Alzheimer’s, and the second is I’m afraid of tripping.”

frequently get mixed up with each other. I do not recall when I last went to confession or how many sins I have committed…I am less Catholic now. However God is in my heart. There is a sixth sense at work that feels his presence. I don’t understand how one could become less religious and possibly more spiritual. Yet this appears to be happening.”

While some people with Alzheimer’s begin to question their religious faith, others ﬁnd that their religious beliefs and practice are not disappearing as much as they are changing with the eﬀects of memory loss or other symptoms of Alzheimer’s. Tim Brennan writes, “I no longer remember prayers I once recited automatically. The prayers

Do you think the onset of Alzheimer’s has had any particular eﬀect on your faith or religious practice? If so, how? Are you comfortable with any changes? Editor’s note: Unless otherwise cited, all quotes in this article are from conversations with Lisa Snyder and are printed with permission

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VOLUME 8

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Volume 8, Number 1: August - October, 2002 Speaking Out Insights from People with Alzheimer’s In the News Discount Prescription Card Available for Alzheimer Drugs Volume 8, Number 2: November, 2002-January 2003 A Whole New Me by Les Dennis, Ph.D. Support Groups Change Memory Training The Buddy Program New Resources from the National Institute on Aging We Have A Life Volume 8, Number 3: February-April, 2003 Decision-Making and Alzheimer’s Disease Issues to Consider by Thaddeus Raushi, Ph.D. Statin Study

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Sleep, Light, and Alzheimer’s Helpful websites Alzheimer Cafe: An innovative program originating in the Netherlands Volume 8, Number 4: May – July, 2003 An Interview with Betty Alzheimer’s Organizations Work to be More Inclusive of Persons with Dementia What’s in a Name? Discussing “Alzheimer’s Disease” by Naomi Boonstra Summer Tips

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Volume 8, Number 1: August - October, 2002

early-stage support groups participated in the survey, representing seven provinces.

Speaking Out Insights from People with Alzheimer’s

Support groups for those in the early stages of the disease have recently become popular as a result of earlier diagnoses and increased awareness of the disease, and have helped make it possible to ask people how they experience the disease. Fifty-four men responded, ranging in age from 52 to 83 years. All participants had been, or were in the process of being, diagnosed with Alzheimer’s or a related dementia. Questions posed to the group were:

Editor’s note: The following article is revised and amended from a media release issued by the Alzheimer Society of Canada in Toronto, Ontario. We are grateful to the Alzheimer Society for sharing this media release so that others may learn of this innovative project and its ﬁndings. In the summer of 2001, the Alzheimer Society of Canada coordinated focus groups across the country of people in the early stages of Alzheimer’s disease or a related dementia. The focus groups and survey marked the ﬁrst time the Alzheimer Society conducted extensive research with people in the earlier stages of Alzheimer’s. The objective was to identify issues from these individuals that would assist the Society in creating educational resources and other services. The information-gathering was also conducted on the Society’s website section “I Have Alzheimer’s Disease” located at http://www.alzheimer.ca. Ten

● What information do you need? ● How would you like to receive this information? ● What are your feelings about having Alzheimer’s disease? ● What concerns do you have? ● What would you say to another person with the disease? ● What would you say to your doctor? ● What is important to you? ● What is your hope for the future? A number of themes and ﬁndings emerged from the survey. People in the early stages of Alzheimer’s place a high

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value on receiving a diagnosis in a compassionate and informative way, on maintaining their independence for as long as possible, and on ﬁnding ways to deal with communication problems, social stigma, and isolation. They also want to learn about the disease and draw strength from relationships with family, friends, and pets, while holding out hope for more eﬀective treatments and a cure for the disease. The following comments reveal some of the themes that emerged in the survey. In order to address the concerns expressed in these themes, Perspectives publisher and editor, Lisa Snyder, has suggested a few coping tips after each section of the survey quotes.

available guidelines. Mail them to your physician so that he or she can be better informed.

Receiving the Diagnosis “The doctor said I had Alzheimer’s disease and left the room.”

It is common for people with Alzheimer's to have diﬃculty with reading. Some people report that by the time they have read to the bottom of a page, they have forgotten the content that was at the top. Perceptual and visual changes in the brain can also make it diﬃcult to read words.

Prepare for your next doctor’s appointment by having your questions or concerns written down for discussion. Many physicians will take the time to answer questions. If he or she does not, get a diﬀerent doctor! Communication Problems “I can’t read anymore. They run together when I read a bunch of things.” “You ask for something then you don’t remember what you wanted; so you shut up and after awhile, you become really silent.”

“When he (the doctor) told me I had Alzheimer’s disease, I dissolved into tears. I was shocked. It was the end of my life as far as I was concerned.” Many people report receiving a diagnosis of Alzheimer’s in an insensitive manner. Alzheimer’s organizations around the world have developed guidelines for discussing a diagnosis in a more respectful or hopeful way, but these guidelines are relatively new.

Consider books and magazines on tape. Libraries across the country loan cassettes and equipment to readers with dementia free of charge. In the US, call the National Library for the Blind and Physically Handicapped at 202-707-5100 for more information. Read short stories or magazine articles that are easier to keep track of.

Call your local Alzheimer’s organization and ask for a copy of any

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When verbal communication becomes diﬃcult, try using non-verbal gestures. If you lose your train of thought, sometimes someone else may be able to help put the pieces together. Pause and try to relax. Sometimes thoughts come back when stress is reduced.

Alzheimer’s is a hard disease to face alone. Call your local Alzheimer’s organization to see if there is an early-stage support group in your region. Support groups provide an opportunity to meet others who share similar experiences and feelings.

Social Stigma and Isolation “I never know whether to tell people I have Alzheimer’s disease or not.”

Relationships with Family Members, Friends, and Pets “To stay with your spouse and try not to be too much of a bother to them. That’s really important.”

“Alzheimer’s disease is a lonely thing. We have to change that.”

“Sometimes I want to retreat from them [family]. They bug me, tell me, ‘Stop. Don’t do that. Don’t go there. What are you doing.’ Like in kindergarten. I know they’re doing it for my good, but…” “A dog is good strength to you. They know what you’re talking about.” There are few things more central to our lives than our relationships with loved ones. The changes brought on by Alzheimer’s can be disruptive and challenging for families and friends and everyone has to make adjustments.

In the past decade, Alzheimer’s has received a lot of publicity and people are learning more about the disease. You may want to start by telling family and close friends about your diagnosis. Often this discussion puts everyone more at ease. Some people with Alzheimer’s are very open and serve as advocates for better understanding and treatment of those diagnosed. Recently actor Charlton Heston went public with his diagnosis and others have testiﬁed at national conferences or before Congress.

If you have conﬂict in your relationships, consider calling the Alzheimer’s Association for a referral to a counselor. A few meetings may be helpful for the opportunity to express concerns and work out some solutions.

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Your friends and family members may also beneﬁt from a support group where they can meet others who have a loved one with Alzheimer’s.

Alzheimer’s. Get connected to your local and national Alzheimer’s organizations to ﬁnd out what resources are available in your community. Participation in research or other programs can reassure you that there is much to be hopeful about even in the face of this challenging disease.

Learning About the Disease “You worry about how it’s going to go, what you’re going to do.” “We need to know what to expect so we can prepare.”

MAILBOX Editor’s Note: We received a number of favorable responses to our last issue’s feature article by Thaddeus Raushi entitled “The Alzheimer Survivor.”

Call your local Alzheimer’s organization for a book list or a schedule of upcoming lectures or workshops. Some helpful books include Alzheimer’s: The Answers You Need by Helen Davies and Michael Jensen, Speaking Our Minds-Personal Reﬂections from Individuals with Alzheimer’s by Lisa Snyder and Alzheimer’s Early Stages by Daniel Kuhn. All of these and others are available through your local bookstore.

One woman wrote:“Your articles have been very helpful to my husband, particularly this last issue with the focus on Alzheimer’s survivors. It gave him renewed appreciation for the abilities he still has.” A support group facilitator comments: “I run an early-stage support group for the Alzheimer’s Association. Perspectives has sensitized me to the issues and I have shared some articles with my clients.”And from Raymond Neutra, MD of Albany, California, who comments on both the Raushi and spirituality articles:“The May-July issue of Perspectives was especially good. My wife Penny (who was diagnosed three years ago) appreciated Thaddeus Raushi’s Alzheimer’s Survival article. We agree with his assessment that knowing that there is a neurological reason for the early symptoms lowers the confusion and makes it possible to

Hope for the Future “I hope to be able to handle it (the disease) the way I feel comfortable, to continue to do some of the things I used to do.” “I hope the medications can hold oﬀ the disease long enough for a cure to be found.” There is a tremendous amount of research and program development happening all around the world in an attempt to help people live longer and more meaningful lives with

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make practical plans. It also allows for earlier medication to prolong lucidity and opens doors for the patient and their close ones to learn what is happening and also to ﬁnd space and time to “put things on the shelf” and just live. Our Alzheimer’s couples group has a theologian in it and we talked some about what it means to have a “spiritual” approach to Alzheimer’s. It seems that an atheist could approach Alzheimer’s in a similar way to a religious person. The common ground is a spiritual approach – a sense that there may be some connection between one’s dilemma and some larger plan; that there is some mystery that Alzheimer’s could perhaps lead one to.

to trim the shrubs at least two times a year, if not three. They seem to grow so rapidly. Last year I had electric trimmers. After almost cutting the cord on two of several occasions, I decided a battery operated hedge trimmer would be safer for me.Well, I almost had the spring trimming completed. I was pushing myself on a hot day to complete the job when whoops, I almost cut a finger off. It didn’t need any stitches, but I was still plenty sore. My caregiver, my wife Sharon, says that I must give up this job. In fact, I think the battery disappeared to make sure.Then the other day, I was shaving. Now, I’ve shaved since I was a kid. Well, I almost cut my lip off. Now, I’m getting an electric shaver for Father’s Day. I’ve learned to pick my battles. There are times when we must lay down the hedge trimmer and the safety razor and go on with life. Hey, there are other ways to get the job done. Flexibility is the key.

This is diﬀerent from a religious approach because religion is about giving formulated answers and hopefully, comfort. Hence in the article on spirituality, the person who had forgotten how to say his prayers and participate in the rituals still felt he was getting more spiritual while his religion was dwindling.”

Chip Gerber

Research Updates

Editor’s note: The following story is from Chip Gerber who maintains an online journal

The Stockholm Conference This past July nearly 3,700 researchers from 78 countries gathered in Stockholm to discuss research advances in Alzheimer’s and related dementias. Many presentations focused on new drug development and investigation as well as the beneﬁcial eﬀects of current drugs on the market.

I am in the early stages of Alzheimer’s disease. I’m 56 and have found that with my daily journey comes many challenges. I was recently cutting my shrubs with a hedge trimmer. It really needed ﬁxing and I was in a hurry. I try

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New studies suggest that beginning drugs such as Aricept, Exelon, and Reminyl early on in the course of the disease and continuing them as long as possible may provide the greatest potential benefit in maintaining abilities and postponing decline. Not everyone can tolerate the side-effects of these medications though and other approaches that are under investigation may hold more promise. One biotechnology company reported on the discovery of an extract from the tropical rain forest vine known as “cat’s claw.” They have developed a compound from this extract called PTI-777. In laboratory mice, the compound was well-tolerated and significantly reduced Alzheimer’s brain plaques. Human trials may be next.

for Alzheimer’s holds a great deal of promise and we will try to keep you updated on these developments as they progress. Statins Under Study As we reported almost a year ago, there is accumulating evidence that suggests that high cholesterol may play a role in Alzheimer’s disease. It may increase a person’s risk of developing the disease and it may also contribute to the production of the beta amyloid protein plaques found in the brains of persons with the disease. This fall the Alzheimer’s Disease Cooperative Study will conduct a nationwide year-long study of statins in participants with Alzheimer’s. Statins are cholesterol-lowering drugs already being prescribed for people with dangerously high levels of cholesterol. The hope is that the statins may lower cholesterol levels in persons with Alzheimer’s and thereby reduce the production of the harmful plaque-producing protein.

Another presentation discussed possible upcoming trials of new anti-inflammatory drugs that may be beneficial in reducing inflammation in the brains of persons with AD. And yet another approach used the drug clioquinol, which binds to copper and zinc, which in turn bind to the harmful amyloid protein found in Alzheimer disease plaques. The hope is to decrease the accumulation of toxic forms of beta amyloid in the brain. A small trial of clioquinol in Australia showed that this medication was safe and possibly could affect beta amyloid levels.

The Wonders of Watermelon Although summer is nearing an end, it may not be too late to partake of the healthy properties of watermelon. Although it is 90% water, watermelon is rich in the powerful antioxidant, lypocene. Antioxidants are thought to be helpful to the overall brain health of persons with and without Alzheimer’s. Watermelons are also high in antioxidant Vitamins A and C. They are

The international collaboration (and competition!) to create new treatments

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low-fat, low sodium, and low calories so this is a sweet treat that is actually good for you!

the date and then check the calendar for the day’s plan. I make rules for myself. For example I always take my purse with me when I go out because the contents tell me who I am and where I live. I always try to put my glasses or other important items in the same place so I can ﬁnd them.

Reference for the Stockholm Conference update: Advances Newsletter–Progress in Alzheimer’s Research and Care. The National Alzheimer’s Association. Vol. 22, No. 3, Fall, 2002.

Brainstorming

I set out cues for myself. I put out what I need to use (like my hearing aid box) in a place where I can see it.

Editor’s note: Members of the UC San Diego early-stage support group recently decided to create a list of memory tips that they use. They invite readers to add to the list and to send your suggestions to Lisa Snyder.

Memory aids When I’m cooking, I lay a sheet of clear plastic over the recipe and then use dry erasable ink pens. I check oﬀ each step of the recipe so that I can remember whether I’ve added each ingredient. Then when I’m done, I just wipe oﬀ the sheet of plastic and it’s ready to go again.

Staying organized You can pick up the newspaper each day to ﬁnd out the date. I have a watch with the date on it, so I just look at my watch a lot during the day to keep track of the date.

I only use the stove now to boil water for coﬀee. I make myself stay at the stove until the water is boiled and then I turn it oﬀ right away so that I won’t forget.

I keep a comprehensive day planner with me (I call it my brain) that has all of my schedules, appointments, and a calendar. It’s attached to my purse so I have everything in one place.

Carry a miniature tape recorder to record notes and reminders to yourself. Some of them are so small that they can ﬁt on a key chain and they are very easy to use.

We keep one large desk calendar with all of our appointments and activities listed on it. Right next to it is a clock that has the time, day of the week, and date on it. So I can look at the clock for

Stress can make it harder to remember things. If I can’t remember something, I

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Robyn Yale, LCSW, has received the 2002 MindAlert Award from the American Society on Aging and the MetLife Foundation for her pioneering work in establishing support groups for people with early-stage Alzheimer’s. The award recognizes programs that enhance cognitive functioning in later life. Ms. Yale has conducted workshops on the development of early-stage support groups throughout North America, Australia, New Zealand, and Europe. Her support group model is based on her research and clinical ﬁndings that contrary to common stereotypes, many people with early-stage Alzheimer’s are willing and able to talk about their experiences when given the opportunity. Support groups can help them accept and cope with the illness rather than remain isolated. These support groups focus on remaining abilities and allow people with Alzheimer’s and their families to face and work through the emotional and practical challenges of the disease and plan for the future together.

just stop, relax, and eventually it comes back to me. When I walk into a department store, I pay close attention to landmarks. I’ll note whether I walked in past the jewelry counter or the men’s department. It helps me ﬁnd my way back out. My wife bought me a cell phone that she reminds me to carry. So that if I’m out on a walk and I don’t remember to come back by a certain time, she can call me. I keep a calendar and note pad next to my phone. After I talk with someone, I make a few notes about the conversation and record any appointment on my calendar. That way I can keep track of who I have talked with and what we talked about. Medicine management I put my medicines next to the refrigerator so I’ll remember to take them with meals.

Robyn Yale is author of the book Developing Support Groups for Individuals with Early-Stage Alzheimer’s Disease published by Health Professions Press in 1995.

I put my medicines on three diﬀerent shelves in my medicine cabinet which represent morning, noon, and night. I use a weekly pill box with the days of the week labeled so I can look in the box for that day and see if I’ve taken my pills.

Actor Charlton Heston Shares Alzheimer’s Diagnosis with Public In a taped statement he prepared for the public, academy award-winning actor Charlton Heston disclosed his diagnosis of Alzheimer’s. The following is an excerpt from his statement: “My physicians have recently told me I may have a neurological disorder whose symptoms are consistent with

In the News Innovative Early Stage Alzheimer’s Work Honored with National Award

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Alzheimer’s disease. So I wanted to prepare a few words for you now, because when the time comes, I may not be able to. I’ve lived my whole life on the stage and screen before you. I’ve found purpose and meaning in your response.

20-40% oﬀ drug expenses. To apply for this card, call Together RX at 800-865-7211. For Aricept users, a similar program exists with income restrictions of $18,000 for individuals and $24,000 for a couple.

Volume 8, Number 2: November, 2002-January 2003

For an actor there’s no greater loss than the loss of an audience. I can part the Red Sea, but I can’t part with you which is why I won’t exclude you from this stage in my life. For now, I’m not changing anything. I’ll insist on work when I can; the doctors will insist on rest when I must. If you see a little less spring in my step, if your name fails to leap to my lips, you’ll know why. And if I tell you a funny story for the second time, please laugh anyway.”

A Whole New Me By Les Dennis, Ph.D Editor’s note: Les Dennis was diagnosed with Alzheimer’s in January, 2000. His ﬁrst article appeared in Perspectives in November of that year. Since then, he has been writing his autobiography. He graciously consented to have this section of his autobiography revised (due to space constraints) and printed in this issue of Perspectives.

We commend Mr. Heston for disclosing his diagnosis to others and for drawing public attention to Alzheimer’s disease.

Barbara and I have been married for 45 years (isn’t that amazing!). We have two sons, and we have had six grandchildren, one of whom died. I have had many occupations: paper boy, freight handler, railroad clerk, labor leader, grade and high school teacher, CIA operative, lobbyist, professor at Loyola University, Chicago, and many more. I earned my Ph.D. from Loyola at the age of 61. I have traveled all over the world, from the Arctic to the Antarctic. I have been in 79 countries so far. I haven’t done time, yet. Anything else? In the academic year ‘97-98 I realized that I was regularly forgetting things. I

Discount Prescription Card Available for Alzheimer Drugs For individuals with low incomes who have Medicare but no other prescription drug coverage, two programs can reduce prescription costs. The TogetherRX Card is a free prescription drug card available to persons with an annual income up to $28,000 individually or $38,000 per couple. This discount card applies to over 150 medicines including Exelon and Reminyl and can save consumers

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would have to go up to the 12th floor where my office was and then down to the second floor for teaching. I would discover that I had left material on the 12th floor, and I would have to go up to the 12th floor to pick up things that I left. I knew something was wrong, but I tried to hide it. I had finished my dissertation and was accredited, but I felt totally worn out. In 1998 Barbara began to see a personality change as I got angrier and angrier. Things were wrong with me – I was crabby, had lost my ability to read, and was getting feedback from my family that my driving was not very good. I resisted when Barbara and my sons pushed hard to see what was going on with extensive medical testing in 1999. We went to the Northwestern Medical Hospital in Chicago and went through many procedures. It was clearly something in the brain, and I definitely had dementia.

by me. Nothing was right. I could not read or write. The computer, my very old friend, was something I could not comprehend. I was a slug. Some of the medicines were terrible, making me sleepy day and night. Finally, one day, I woke up. I sat at the computer and ﬁnally started typing. I was hot. I was really going. Then I did a spell-check and I was horriﬁed. It was all garbage. Nothing made sense. Slowly, very slowly, I have hobbled my way back to writing. Every two lines, I do spell check. I only check those two lines. Then I go on to the next two lines. It is slow, slow, slow, but it does work. I also regularly go back and catch some of the mistakes I did not see at all. Isn’t AD a lot of fun! Why do I use the two-lines method? It would embarrass me endlessly otherwise. I just can not do it any other way. Is it pride or pain? Probably both.

I was diagnosed as early-onset Alzheimer’s with frontal lobe problems in January, 2000. I did not understand any of this, and I did not want to understand. The diagnosis was horrifying. First I thought it was an almost instant death, which I could prepare for. Then I found out I could live many, many years, like Ronald Reagan. That was beyond horrifying to me. I did not want to be an automaton. I wanted to die, and quickly. I was strongly suicidal, but I tried to cover it from my family. I went down very deep into a pit that I felt must have been built

Memory An interesting thing has happened in the process of writing this long autobiography. I believe I am gaining memory! I began inserting pictures in my biography. It seemed weird at ﬁrst. But pictures, it seems, connect me back to things I have forgotten. Suddenly, I have been ﬂooded by memories of family and things I had forgotten, all largely because of the “assault” of pictures. Connections seem to be getting better. It also seems that sitting at the computer is slowly bringing back computer skills I had

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completely forgotten. Who knows what will happen under the auspices of AD? The most diﬃcult part of AD is memory loss. I can recall many long-term memories, but few current memories. Words that I used yesterday can be gone tomorrow, or even right now. Many times I know exactly what I want to say, but it does not come out in the same way. My ability is, at best, sporadic. (Note: the previous six words took 12 minutes to write). I often forget the beginning and jump to the end. Or, I often just forget what it was in the ﬁrst place.

one has a problem, all try to help. When there is a sickness, we console. The caring and concern is obvious and beneﬁcial.

Change Through this period of AD, I have changed signiﬁcantly. I understand people a lot more. I am far more mellow than I have ever been. Some friends have run away and many others are very good to me. When they ask about AD, I explain it as best I can. In some cases, I have to explain to others why I can’t get some words out or seem confused. I am concerned about people who have the disease. I have a desire to help people with AD and ease them into a better sense of their disease. I have also had people ask me if perhaps they have AD. I let them talk more and then I simply say ‘Well, it appears to me that you have it. But then, I am not a doctor, and neither are you.’ I suggest that they do not go to a family physician but instead, to a neurologist.

Support Groups Support groups are probably good for most everyone, at least occasionally. I was never a fan of them, but when I went to my ﬁrst group, I had just lost my right to drive, and I was pretty angry. I felt they were a bunch of strange people, but I went along. The one really good thing was when we mixed the patients and the caregivers together. That produced an expression of need by the patients that the caregivers had not noticed. When the opportunity came to go to the Northwestern University’s ongoing support group, I jumped. Darby Morhardt, a social worker, is in charge of the group and she seems to know a great deal of our problems and concerns. Our group is diverse. We have about 16-17 members and we have developed a camaraderie that is deeply intertwined. We can talk openly. When

People often ask me what advice I would suggest to help people with AD. First of all, if you are a medical type, shut up and try to listen to the patient. You might actually learn something of value. If you are a patient, be assertive. You must make them realize that you are a real live person, and you want answers.

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If you are at the stage where you can travel, do it! We have spent money on travel and it is worth it. Why not get out and do those things you have always wanted to do? If you can’t do that, almost anything’s better than sitting around. Why die on a gurney? You could have been written about in the AARP bulletin like I was (March, 2002, Diagnosing Alzheimer’s Early Can Pay Oﬀ). There is a great big world out there, and I have seen a lot of geriatric types out there doing things. Walk. Run. Push your buttons! I love gardening, so I volunteered at the Garﬁeld Park Conservatory in Chicago.

Disease Research Center for her response to Mr. Gordon’s question. Dear Mr. Gordon, Mental status tests are used by health professionals for many reasons. They serve primarily as measures to help clinicians evaluate an individual’s overall thinking abilities. Just as a thermometer reading can alert a physician to fever in the body, the mental status exam is a tool that can alert a physician to potential diﬃculty in brain function. In these tests, you are asked to complete a set of mental and physical tasks associated with various brain functions such as language, memory, problem solving, and spatial abilities (the ability to judge distance and perspective). For example counting backwards from 100 by 7’s measures “working memory” ability, which is used for such tasks as holding a phone number in mind just long enough to write it down and for calculating how much change you should get back when making a purchase.

Although I loved teaching and many other things I did, I really ﬁnd lots of things to do and ways to help people. So, this is me, now. It is a long way from the paper boy I was, or the labor leader, or the CIA operative. I am kinder, gentler, and I hope I have expressed my desires to my family. I feel they will respect them. Until that time, I’m getting out and doing things, always!

Mental status exams are generally given as part of a more comprehensive evaluation. Recommendations and referrals for more tests (such as a head scan, or evaluation of daily functional abilities) may follow. You ask about driving. A doctor’s recommendation that someone stop driving is usually based on combined evaluations of both

MAILBOX Editor’s note: Mr. Gordon is certainly not the only person with Alzheimer’s who has ever questioned the purpose of mental status testing. We are grateful to Cecily Jenkins, PhD, a neuropsychologist at the University of California San Diego, Alzheimer’s

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mental and functional abilities. Driving is a complex process that requires memory, rapid problem solving, quick reﬂexes, and accurate spatial abilities. Mental status testing addresses many of these areas and can be one tool to evaluate a person’s abilities. If your physician does not provide an acceptable explanation for the purpose of the testing, ask for a copy and explanation of the results. It may be easier to discuss the test once it is completed. One of the oldest and most commonly used references for the test is: Folstein et.al. (1975) “Mini-mental state: a practical method for grading the cognitive state of patients for the clinician.” Journal of Psychiatric Research, vol.12, p.189-198.

a bunch of simple questions be used to determine if I should drive or not? I have also experienced that it is frustrating in the doctor’s oﬃce when being tested in this manner and not having a good explanation from the doctor as to the purpose of the testing.

Dear Ms. Snyder: I am a retired dentist and lawyer. I was diagnosed with Alzheimer’s disease several years ago. I have been involved in an early-stage support group, as well as working with representatives from the local Alzheimer’s Association chapter to educate them about how it feels to have Alzheimer’s.

Sincerely, Thomas Gordon

I would like to know if you have any information or input that you could pass along on this subject about the validity of the Mental Status tests done by the doctors and what they should and should not be applied towards. I imagine that I am not the only individual with Alzheimer’s disease who has experienced such frustration with these situations. Any information or references you could provide would be appreciated.

Research Updates Treatment News A few issues ago we reported an update on the drug, Memantine. Although approved in Europe for the treatment of moderate-to-severe Alzheimer’s, (under the names Ebixa and Axura), Memantine has still been under investigation in the United States. The most recent study of Memantine has been concluded now, and the results are very promising. Memantine works diﬀerently than Aricept, Exelon, and Reminyl, the drugs

I have recently been giving a great deal of thought to testing issues. I do not understand the applicability of most testing done by doctors on individuals with Alzheimer’s disease. For example, what relevance does the activity of counting backwards by 7 from 100 have to every day activities? How can asking

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currently available to treat Alzheimer’s. These drugs maintain levels of a brain chemical responsible for memory called acetylcholine. Memantine, however, helps to regulate the amount of a diﬀerent brain chemical called glutamate. Glutamate also has an important role in learning and memory. In the most recent study of Memantine conducted by Forest Laboratories, 403 persons with moderate-to-severe Alzheimer’s who were currently taking a stable dose of Aricept were randomized to six months of treatment with either Memantine and Aricept combined or just Aricept and placebo. At the end of the six-month period those given Memantine with their Aricept performed better on measures of function and thinking than those on Aricept alone.

there are any kind of memory training exercises that can be done to help improve memory. Results from a recent study in Great Britain suggest that a form of simple, repetitive memory training can help some people with early stage AD retain speciﬁc memories.

Researchers studied 12 participants with mild symptoms of AD. The researchers trained the participants to remember names of people whom they had diﬃculty naming from a set of 12 photographs. Some of the faces were personally familiar; others were faces of famous people. Participants were taught various memory training techniques to help them link the names to the faces and store them in memory. The researchers trained participants in just half of the photographs so that they could compare how well participants did on the trained versus the untrained photograph recognition. Participants learned to associate a face with a name at the rate of one per week. They practiced and were tested at three, six, and twelve-month intervals.

Forest Laboratories is submitting their findings to the Food and Drug Administration (FDA) for approval. They are also conducting three additional placebo-controlled trials to further confirm Memantine’s cognitive and functional benefits and to evaluate whether it is as effective in persons with mild-to-moderate disease as it is in those with more severe disease. This is an exciting development in treatment and we hope to see Memantine on the market in the US sometime next year.

Memory Training Persons with Alzheimer’s disease (AD) and related dementias frequently ask if

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At the end of the study, researchers found that the memory training was beneﬁcial in helping participants remember names and faces even six months or more after the training. Although not everyone was equally successful, the researchers feel that this is a promising step in better understanding ways persons with AD can use memory training methods to help strengthen recall.

Alzheimer’s Disease Center originated the concept of The Buddy Program to pair ﬁrst-year medical school students with people with early-to-moderate stage AD. This program allows both the student and the diagnosed person to get to know each other on a more personal rather than medical level. The student learns more about the experience of AD directly from someone experiencing the day-to-day impact of the disease and has an opportunity to build a relationship with a patient. As one student remarked, “I’m feeling so fortunate to have met such a wonderful person. I’m in awe of the wealth of experiences my buddy is willing to share.” In turn, the person with AD has the satisfaction of contributing to the education of a future physician and of enjoying the companionship of the medical student “buddy.” One woman with AD remarked that although she couldn’t remember her buddy’s name, she said, “I’ll always remember her because I like her. She is always nice to me.”

The Buddy Program Editor’s note: The following article describes in greater detail, the Buddy Program that Les Dennis referred to in our cover article. We are grateful to Darby Morhardt, MSW, of the Northwestern Alzheimer’s Disease Center in Chicago for contributing most of the text for this article. It is not uncommon for persons with Alzheimer’s disease (AD) or related dementias to feel that their doctor is not always sensitive to their condition. Although there are now medicines available to treat AD, doctors have long been trained that there is little they can do to help persons with a progressive dementia. This perspective is changing for new medical students at Northwestern University’s Medical School in Chicago and individuals with AD are inﬂuential in helping to create this change.

The buddy pairs meet for a minimum of four hours a month. Typical activities are going out for lunch or dinner. Other activities have included playing scrabble, playing music or singing together, window shopping, visiting museums, or taking a walk. In the process, students develop empathy and compassion for the person with AD. One student said about her buddy with

In 1997 Dr. Marsel Mesulam of Northwestern’s Cognitive Neurology

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AD, “I felt kind of sad that she kept forgetting what she had been talking about, but it didn’t seem to upset her too much, so that made me feel better. It was interesting to see how the diﬀerent symptoms we talked about manifest themselves, which is good, because in medical school we tend to think of the disease as a bunch of symptoms, not as interconnected to a person’s life.”

New Resources from the National Institute on Aging The National Institute on Aging has recently updated its most popular publication titled Alzheimer’s Disease: Unraveling the Mystery. This edition uses helpful illustrations and non-technical language to present the latest research ﬁndings and basic science behind Alzheimer’s disease. The contents include:

The medical students’ basic knowledge of AD increases based on tests they are given before and after their participation in the Buddy Program. More importantly, their sensitivity towards those suffering from the disease grows a great deal over the course of their year in the program. One student reflected, “This program opened my eyes to the reality and difficulty of living with AD – it’s a constant struggle of adjustments and acceptance of losses. I feel that I understand AD much better now, and in a way that a chapter in a textbook could never have taught me.”

A Walking Tour of the Brain Latest Research Findings on: - Causes of Alzheimer’s - Diagnostic techniques - Treatments to slow, delay, or prevent Alzheimer’s Support for Caregivers Each 60-page book also comes with an animated video on CD-ROM showing the way Alzheimer’s aﬀects the brain. The new Alzheimer’s Disease Medications Fact Sheet is a helpful pamphlet that describes the four currently approved medications to treat mild-to-moderate Alzheimer’s disease. These “cholinesterase inhibitors” are Reminyl (galantamine), Exelon (rivastigmine), Aricept (donepezil), and Cognex (tacrine).

Persons with AD and related dementias have a great deal of wisdom, knowledge, and experience to impart to others and this is particularly important in the education of future doctors. One student sums up the experience well: “My buddy taught me the most fundamental part of life: live in the present and be happy that you are alive.” Is there any more valuable a lesson to learn?

We Have A Life By Victor DiMeo, PhD Editor’s note: Victor DiMeo is a retired clinical psychologist. He was diagnosed

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with Alzheimer’s disease two years ago and still facilitates some support groups in his community.

others. This, the ultimate and true purpose of all humanity.

Volume 8, Number 3: February-April, 2003

Aging with Alzheimer’s is a murky experience for many of us. It appears that we are living amongst the ups and downs of the mysteries of creation which also have gifted us with life and living.

Decision-Making and Alzheimer’s Disease Choices and Challenges Not a day goes by when we aren’t faced with making numerous decisions. From the time we get up in the morning to the time we go to bed at night, we are making routine decisions ranging from what clothes we will wear or what food we will eat, to where we will go or who we will see. We may give little thought to some of these decisions, or rely on well-established routines to guide us through the day. Other decisions, however, are less familiar or may involve more consideration. For example, managing finances, arranging for a trip, scheduling appointments, or deciding how to get to an unfamiliar place are all decisions that require more problem-solving and organization. Some symptoms of Alzheimer’s disease or a related disorder can affect your ability to make both routine and complex decisions and it is not uncommon for individuals with dementia to feel that others are beginning to have a greater influence in their personal care and decision-making. Some are relieved to have this assistance; others present or resist this help and feel it is intrusive.

It is the little children who provide us with hope for the future and they will freely love us no matter what or who we are. For in some uncanny way, they seem to understand and accept us better than many adults are able to do. Celebrate yourself. Enjoy what you will. It is the present and the past with the wonderful memories and great times of joy which we shall remember, and although our youthfulness begins to fade, the beautiful memories often linger longer. But now old Alzheimer’s tells us to prepare for what may come -- to be who we are, yet to love those who love us; while ﬁnding solace within, so as to bring us peace and comfort during this mysterious transition into the unknown. The key is to accept and cherish, and to be thankful that we have learned to care for those who suﬀer the same disease. Why? Because the greatest of people in the world are not necessarily the celebrities of fame, but rather those who have the capacity within their hearts and souls to be humane and caring for

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partners were not always aware of some of the values and care preferences expressed by their loved one with dementia. You may want to consider impact on decision-making when you have Alzheimer’s or a related dementia: Who have you or would you appoint as your primary care partner? Who would be second choice in case that primary person was not available to help you as needed? Have you completed estate planning or powers of attorney for ﬁnances and health care that outline your decisions in a legal document?

There are a number of issues to consider that may be helpful in this sensitive process. Symptoms of Alzheimer’s that affect decision-making abilities include memory loss, problems with organization, difficulties with problem-solving (figuring out how to do something), and impaired judgment (the ability to know what is the correct, safe, or wise thing to do in a given situation). These symptoms affect each person differently and vary at different stages of the disease. Some people with Alzheimer’s are well aware of these changes, while others with the disease may deny the problems they are having. Regardless of your own evaluation of your symptoms, it is very important that you try to make your wishes known about a wide range of decisions affecting your care and well-being in the event your symptoms worsen. In their excellent study, “Making Hard Choices: Hearing Both Voices” conducted at the Family Caregiver Alliance in San Francisco, researchers Feinberg, Whitlach, and Tucke found that persons with mild-to-moderate dementia were reliably able to express their values and wishes in six key areas: health care, finances, personal care, social activities, living arrangements, and the possibility of living in a nursing home. They were also effectively able to choose a person (usually a family member) to make decisions for them in these areas when necessary. However, the researchers also found that family members or care

Is there a history of positive teamwork between you and your care partner? How have you made decisions together in the past? If you have a positive foundation, you may be able to build on this as you address these new decisions in life. If you have been accustomed to being very independent, in control, and making decisions on your own, you will likely be more challenged by this new need for cooperation and communication. One woman newly diagnosed with Alzheimer’s wisely states, “There has to be a lot of trust. By having enough trust, you can bear a lot of things; trust about making decisions that are really mutual, or trust that you can talk about behavior on one or the other's part.”

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outside opinion from your doctor or other Alzheimer’s specialist or counselor. What kinds of decisions do you and your care partner agree on? On what issues is there disagreement? How can you balance your needs and wishes with the concerns and needs of your care partner? Alzheimer’s disease may bring on some helpful or challenging adjustments in daily decision-making processes, but the decision about how to collaborate and take an active role in this process may be one of the most important decisions you can make.

The approach that you and your care partner each take when discussing decisions matters a great deal. One woman who lived alone with no family nearby struggled with the way in which she felt some friends and professionals communicated with her: “It was very insulting to me to be told, 'Never mind what you think. This is what I think you should do.' There is a lot of that attitude in these well-intentioned people.” Do you feel that you and your care partner communicate eﬀectively? What helps or hinders this process and how can it be improved, if needed?

“Making Hard Choices: Hearing Both Voices” is available from the Family Caregiver Alliance at 1-800-445-8106 or email: info@caregiver.org. Quotes in the article are from “Speaking Our Minds-Personal Reﬂections from Individuals with Alzheimer’s” by Lisa Snyder. Henry Holt, Publishers.

MAILBOX Editor’s note: We received recent correspondence from a reader with Alzheimer’s who states: “I am slipping, but can still read and understand in the moment. Then I forget what I have read.”

Do you and your loved ones agree about the impact of your symptoms on your ability to make sound decisions? For example, you may feel it is perfectly ﬁne for you to drive a car, but others may worry about the impact of Alzheimer’s on your driving safety. If you are in disagreement about the signiﬁcance of your symptoms, get an

We offer the following thoughts in the hope that other readers may also benefit from these strategies: It is very common for people with Alzheimer's to have significant difficulty

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with reading. Memory loss can aﬀect the concentration required to keep track of written content. Some people report that by the time they have read to the bottom of a page, they have forgotten the content that was at the top. Also perceptual and visual changes in the brain may make it diﬃcult to interpret letters or words, or to comprehend their meaning. Thus reading can become a very frustrating and unrewarding process. Some ideas: Consider reading shorter articles in the newspaper, magazines, or in Reader’s Digest. Don’t hesitate to read a paragraph over two times (or more) until it becomes a bit more familiar. Sometimes repetition can help memory.

previous professional work, places you have traveled etc., or specific current events you are trying to track). When we are more interested in something, we have better attention. Paying attention is an important part of storing and retaining memory. ● Although it takes effort, try making a few written notes about selected facts, names, or specific bits of content while you are reading. Writing down notes may also help you to remember a bit better. If you have trouble reading due to perceptual or visual problems (as previously mentioned), a wonderful resource can be of considerable help. The National Library Service for the Blind and Physically Handicapped has a talking-books program that produces books and magazines on tape. More than 67,000 fiction and non-fiction books are available, as well as poetry, short stories, and news weeklies. A network of cooperating libraries across the country loan both the cassette tapes and the easy-to-use cassette equipment to eligible readers. Tapes also can be loaned out and returned through the mail. A reading disability based on Alzheimer's disease or a related disorder makes one eligible for this excellent program. The program is free of charge.

● Try discussing what you have read with someone else immediately after you have read it. Discussing the material may help to prompt your memory and also may help you to retain the information for a longer period of time. ● Consider reading about topics or articles that really interest you (articles on hobbies you enjoy, your

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Following the surgery, unable to do well the counseling, teaching, and faculty work I had done for over twenty years, I chose early retirement. Cognitive problems continued to persist. Then in 1998, I was diagnosed with Alzheimer’s. What I thought had been “burn out” in my work, I learned was not burn out at all, but disease. What I thought was mental laziness when unable to follow counseling sessions or committee meetings, when I couldn’t retain advisement information or a simple set of instructions, when I would forget people, was not mental laziness at all, but dementia. Unwanted, unimaginable, unacceptable, yet the diagnosis that made sense out of what was happening to me.

Issues to Consider By Thaddeus Raushi, PhD Editor’s note: Just over a year ago, Dr. Raushi gave this talk to an audience of professionals and peers at the New York City Early Alzheimer’s Conference. We are grateful to Jed Levine, and the New York City chapter of the Alzheimer’s Association for providing this early-stage forum and to Dr. Raushi for his permission to print his talk. Thank you for the opportunity to share some thoughts with you this morning. I will brieﬂy describe my personal experience with Alzheimer’s disease and then present several issues toward enhancing the process of diagnosis and living with the disease. For this presentation, I will use the terms Alzheimer’s and dementia interchangeably.

Three times I was given the opportunity to reassess life’s direction, face mortality and self-worth, and recapture meaning for living. The third time though, felt so critical since what was being stolen away by the Alzheimer’s was a core and precious part of me, the capacity to think. Through this reassessment, what I have learned is to live each day to the fullest, thankful for that day, thankful for the wonderful support of my precious wife, Sylvia, of family and friends, of doctors and support groups and the Alzheimer’s Association. I learn to live celebrating and using the capabilities I have each day, rather than bemoaning what I’ve lost or will not have in the future. Instead of seeing myself as a victim, I see myself as an

In 1996, while my wife Sylvia and I were providing care to aging parents and just two years after earning my PhD to enrich my college counseling and teaching career, I faced the diagnosis of cancer, a rare incurable lymphoma called Waldenstrom’s macroglobulinemia. I’ve had chemotherapy twice and though currently I wait and watch, I am thankful for these ﬁve years. In 1997, I had an emergency craniotomy for a brain tumor. Though I have some minor losses, seizure activity, and the tumor is recurring, I am quite stable and again have much for which to give thanks.

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Alzheimer’s survivor, living each day fully aware of the disease and its progression, yet always focused on doing the best I can with what I have at any given time.

The third issue Eﬀective referral of patients by doctors to the Alzheimer’s Association is important. Closer working relationships between many doctors and Associations may enhance such referral. While medications help, support services are often the key to how well people live with the disease. Doctors are key inﬂuences in patients obtaining such support.

There are seven issues I would oﬀer for your comment: The ﬁrst issue There generally exists, it appears, a lack of understanding by doctors, by other health professionals, and by organizational systems about the nature and characteristics of “early” Alzheimer’s. I’m so often surprised at how many doctors and other health care professionals remain ignorant of current information about early Alzheimer’s. There needs to be change.

The fourth issue Better access is needed to social security disability for people with an early Alzheimer’s diagnosis. I know ﬁrst-hand the unwieldy, extended, and costly experience. I know of misinformation provided by professionals in the system. I know how in only minutes of a face-to-face contact with an Administrative Judge the problem was understood. I am not alone in this experience. Not only can the disease be demeaning and overwhelming, but so too, can the system.

The second issue Words we use to describe Alzheimer’s and people with the disease are primarily negative, depersonalizing and emotion-laden labels. Such descriptions debilitate, rather than heal. More positive and unbiased labeling is needed within the medical, health service, and legislative communities. Alzheimer’s is often described as a death sentence and the diagnosed individuals, victims. I, and many others in the early stage, do not live in the doom of death or as victims stripped of all capabilities and competencies. Yet that is what most descriptions and labels imply. Labels need changing.

The ﬁfth issue Research primarily focuses on cure, medications, and search for the cause. While these emphases are highly important, I would propose additional research eﬀorts in rehabilitation. The support services, treatments, and therapies that increase an individual’s ability to live with the disease, to adapt and to rebuild through compensations, are rehabilitative tools. Research into

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finding the most effective tools would be of great benefit and would also help lead to services that span the whole progression of the disease.

Research Updates Statin Study In past issues we have reported on the hopeful therapeutic benefit of statins (cholesterol-lowering drugs) in slowing the progression of Alzheimer’s. High cholesterol may increase a person’s risk of developing Alzheimer’s and it may also contribute to the production of the beta amyloid protein plaques found in the brains of persons with the disease. CLASP is a new research study to investigate the safety and effectiveness of simvastatin (a cholesterol-lowering drug, or statin) to slow the progression of Alzheimer’s. The Alzheimer’s Disease Cooperative Study has begun a nationwide recruitment of persons with mild-to-moderate Alzheimer’s for participation in this study. There will be 400 participants recruited from 40 research sites in 24 different states across the US. Half of the participants will receive placebo; the other half will receive the statin for the duration of the 18-month study. Study participants can continue taking Aricept, Exelon, or Reminyl. Many people have been reluctant to participate in studies because they did not want to discontinue these potentially therapeutic medicines in order to participate in an experimental study. This study design eliminates that concern.

The sixth issue There are serious problems today regarding the recruitment and retention of nursing personnel, especially in nursing facilities. This has direct and serious implications for those of us with early Alzheimer’s as we face the future. It seems that as a society, we must in some way assess our values and how these values connect to our ﬁnancial resources. Salary discrepancies between, for example, professional health care providers and professional athletes, raise such questions. We may need to address the larger picture behind the nursing shortage problem. The last issue Advancements in knowledge about Alzheimer’s in diagnostic techniques and medications encourage early diagnosis. At the same time, severe, negative insurance coverage implications discourage diagnosis precisely when medications and services might be most helpful. This serious dilemma cannot be ignored. Addressing this issue before the large onset of baby boomers enter older years is wise. I look forward to talking with you. Thank you for listening.

Statins are already being prescribed for people with dangerously high levels of cholesterol. The hope is that this statin

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may lower cholesterol levels in persons with Alzheimer’s and thereby reduce the production of harmful beta amyloid.

longer periods of time during the night. Bright light in the morning helped some participants fall asleep earlier and wake up earlier whereas bright light in the evening helped some to stay up and wake up later. Participants who received the evening bright light had an improvement in their circadian rhythm in that they went to bed and got up more regularly. For those with sleep disturbance, Ancoli-Israel suggests increasing light exposure during the day either by going outside more often in good weather or using bright indoor lighting during the winter months.

Sleep, Light, and Alzheimer’s Persons with dementia may experience changes in sleep patterns. Some people sleep more, some less. Others wake up frequently at night. Changes in sleep patterns can be caused by depression, confusion, frequent need to urinate, inactivity, or medication, and any changes should always be discussed with your doctor. Persons with dementia may also suﬀer from sleep apnea, a disorder in which the person temporarily stops breathing numerous times while asleep. Alzheimer’s can also disrupt a person’s natural internal clock or circadian rhythm, thus making it more diﬃcult to have a normal sleep/wake cycle. Results of a hopeful new study at the University of California, San Diego suggest that providing people with Alzheimer’s with a few hours of bright light each day helps them sleep longer at night and maintain more normal sleep patterns. The study investigator, Dr. Sonia Ancoli-Israel, exposed participants with Alzheimer’s to dim red light or bright light for up to two hours in either the morning or evening. The participants’ sleep cycles were monitored using a wrist device worn during sleep. After only 10 days of being exposed to a few hours of bright light, participants were sleeping for

Helpful websites In the past few years, the internet has become a valuable resource for obtaining information directed speciﬁcally to persons with dementia. If you do not have access to the internet, you probably know someone who does, or you can call your local Alzheimer’s organization and ask them to print out the available web site information for you. http://www.alzheimer.ca

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The Canadian Alzheimer Society web site has a very helpful and extensive section devoted to persons with dementia with educational material and personal testimonies.

Network (DASN), an international group of individuals with dementia.

Alzheimer Cafe: An innovative program originating in the Netherlands

http://www.alzheimers.org.au The Alzheimer’s Australia web site has a section devoted to persons with dementia with an excellent assortment of detailed Help Sheets on diﬀerent topics that can be downloaded.

Many individuals with Alzheimer’s and their families talk about the importance of meeting others who are “in the same boat.” A wonderful program that was created by Dr. Bère Miesen of the Netherlands and expanded to the UK in 2000, helps family members of all ages meet one another in an informal and educational “café” environment. Typically, the two-hour evening is held once a month in a consistent central location and has three parts: There is an initial period of informal socializing. This is followed by a program that includes a professional discussing, or being interviewed about, an Alzheimer’s-related topic followed by one or more family members (including the person with dementia) presenting or being interviewed on the same topic. The evening ﬁnishes with a question and answer period and more socializing. The monthly meeting topics cover a variety of issues families will need to address along the continuum of the disease. The addition of light snacks and beverages helps to create the “café” environment as does the occasional music, holiday singing , or other celebration.

http://www.alzheimers.org.uk This web site of the Alzheimer’s Society of the UK has an excellent site called “I Have Dementia” that covers many topics and includes personal experiences and poetry. http://www.alzheimers.org.uk/westke nt The ﬁrst UK Alzheimer’s Society local web page to be designed by people with dementia. Provides information on the services of this Great Britain branch and is a voice for people with dementia. http://www.alz.org This web site of the US National Alzheimer’s Association has a concise but useful section for the person with Alzheimer’s with a message board for correspondence. http://www.dasninternational.org This educational web site and online chat room is designed and organized by the Dementia Advocacy and Support

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As per Kandy Redwood, coordinator of the Hampshire, UK café, this highly successful program works because of the combined commitment of the families that attend (and sometimes agree to be interviewed) and the professionals who participate in the monthly event. Perhaps this program could be replicated in your community.

I have to listen to people calling other people by name so I can catch on. I find all kinds of ways of doing that! I've learned many ways to get around not knowing someone's name by relating to the person first and seducing them into doing more talking. If they talk about five minutes, pretty soon I have enough clues. I can usually identify more quickly with what people do, and where they come from, than their actual name

Volume 8, Number 4: May – July, 2003

There is always a startled feeling when I forget something that I could have talked about yesterday. I get upset with myself and think, "Oh damn it all." If I sit with it awhile, maybe it will come back. An hour later the whole thought may return but it's too late because the moment has passed. Sometimes I can say, "Oh I forgot to tell you this." But it's all a matter of timing. It helps that I'm not alone in this. For the time being Kurt is there to correct me on things and I also correct him sometimes. But, as long as Kurt can stay one step ahead of me, I'm not going to worry. We've been a team for a long time, so I guess I don't have much choice in the matter and neither does he. I'm more dependent now and I've never been particularly dependent. I'm not glad about the fact that this is happening. But I know that I have no choice at this point. Sometimes when I forget something, Kurt has to get hold of himself and not get all uptight about it. Obviously he's having to learn this over

An Interview with Betty Editor’s note: The following text is edited down and reprinted from the book “Speaking Our Minds – Personal Reﬂections from Individuals with Alzheimer’s” by Lisa Snyder, W.H. Freeman Publishers, 1999. I turn 78 in November. I think it's just within the last year that I've noticed I have a memory problem. As a social worker, I dealt with people who had memory problems so now it's a matter of being honest about my own. I never was good at memorizing. I always knew that and it didn't bother me. But recently, during lengthy evaluative testing, it was clear that there was something else going on. While taking the tests I was aware that I just didn't have the usual ability to recall. I've needed to have that ability for most of my life so I know when it's not there. I've been in the same swimming class for two years and I don't remember everyone’s names. They just escape me.

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a period of time. It irritates me that he gets ticked oﬀ over something that I've forgotten and every once in awhile I blow up. I'm sorry about it, but I just forget things.

People may deny that they have Alzheimer's disease because they don't have the opportunity to talk with other people who are sympathetic and understanding, and who will help them along in the whole process. That's a sad state of aﬀairs. Anyone who has this diagnosis needs to have others with whom to talk.

In the past, people never uttered the word Alzheimer's for fear that they would catch it. They were defending against it. It used to be that way around cancer. But now Alzheimer's disease has a lot of attention and the symptoms that are described scare people -- that we'll walk blindly into a car because we're lost and wandering. It isn't necessarily true but people get an idea. When it comes to Alzheimer's you're not sure how people will respond to you. None of us like unexpected responses. People may brush you away because they are afraid of the disease. They may feel uncomfortable because they don't know what to say to you.

I'm all for support groups for people with Alzheimer's disease. That's one of the best ways to ﬁnd out how varied this disease is. People are in all diﬀerent stages and if you just open your heart and your brain to it, you can learn an awful lot. If people are in the earlier stages, they can talk about their experiences and express their feelings and anticipation about the future. The primary value is in sharing experiences about a common issue without having to put up a wall because you're concerned about how people are going to respond.

It's very diﬀerent if you know that you are talking with someone who is familiar with the disease; there is a safety net when you talk with people who understand and care about your condition -- people who don't step on your feelings, or minimize your problem. When you forget something and somebody says, 'Oh well, it's not important,' maybe it was important. It shouldn't have been forgotten, but it was, and you need an explanation for yourself.

The main issue is to help people to be open about Alzheimer's -- not to privatize it, especially within the family. Very often the tendency with something like this is to hold it in and suﬀer with it. But it isn't necessary to suﬀer alone. People with Alzheimer's are curious about what all of this is going to mean to their lives and if they can get some sense of this through a support group then they can move into this process more at ease. That's very important.

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changed for publication. If a correction can be made, that would be terriﬁc. Many thanks, Lana Sheridan, National Center of Caregiving Family Caregiver Alliance, San Francisco

Research Update Homocysteine is an amino acid that is absorbed from foods we eat. There are many ways that abnormally high levels of homocysteine may damage brain cells. It is thought that the risk of developing Alzheimer’s may be increased by as much as 4-to-5 times in people with elevated homocysteine and research has shown that blood levels of homocysteine are often higher in persons with Alzheimer’s. Also, between persons who have the disease, those with higher homocysteine levels may decline more quickly than those with lower levels. Genetics, diet, kidney function, age, gender, and smoking can contribute to elevated homocysteine levels. High homocysteine levels may also indicate folate, Vitamin B6, and B12 deﬁciencies, and treatment with high doses of these vitamins may reduce homocysteine by an average of 30%.

Our support group has held up remarkably well. It's nice to have the feeling that you're all in the same boat. The weekly continuity is an important part of the process. I like the way people get really concerned about someone who is missing and what's going on in the person's life. That's real grouping. It hurts me to see some people in the group who I know and care about go down faster than it seems they should. It's sad. But I'm there. I'm a part of the group, and that's it!

MAILBOX Dear Ms. Snyder: We are delighted to see our study referenced in your excellent Perspectives newsletter article entitled Decision Making and Alzheimer’s Disease: Choices and Challenges. We do want to let you know though that the name of the study is actually “Making Hard Choices: Respecting Both Voices.” The title quoted “Making Hard Choices; Hearing Both Voices” was the name given to the draft study, but was

Researchers in the United States and in Great Britain have recently asked whether lowering homocysteine levels in persons with Alzheimer’s could slow down the progression of the disease. A

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new study being conducted through the US nationwide Alzheimer’s Disease Cooperative Study is attempting to answer this question. This study is an 18-month trial enrolling 400 participants from 35 diﬀerent sites across the US. The study will test whether reducing homocysteine levels with high-dose vitamin supplements can slow the rate of mental decline in people with Alzheimer’s. Participants will be randomized to receive either placebo or high doses of B6, B12, and folate.

dementias in their earliest stages. This has resulted in many more individuals with dementia who are able to express their own concerns and support needs. With the bias of services overwhelmingly directed to the caregivers, Alzheimer’s organizations have needed to correct the gap in available educational materials and support services for those diagnosed. In many diﬀerent countries, this has resulted in the development of innovative early-stage programming and collaborative eﬀorts between persons with dementia and their national organizations.

Alzheimer’s Organizations Work to be More Inclusive of Persons with Dementia

Founded in 1980, the National Alzheimer’s Association in the United States recently drafted the following statement from its Board of Directors: “The Alzheimer’s Association is committed to the full participation of people with Alzheimer’s disease in all aspects of the Association’s work. Speciﬁcally, the Association is committed to ensuring that people with early stage dementia: 1) are provided opportunities to speak on their own behalf; 2) are engaged in designing programs and inﬂuencing public policies on Alzheimer’s, and 3) receive services and support appropriate to their stage of the disease.”

Around the world, national Alzheimer’s Associations and Societies have long been dedicated to providing education and support to individuals, families, and other caregivers. Until recently, persons with symptoms of dementia were often diagnosed in the more moderate–to-late stages of the disease and were less able to voice their own concerns and support needs to their regional Alzheimer’s organizations. As such, the focus of these organizations’ eﬀorts has primarily been directed to family caregivers with the understanding that in supporting caregivers, persons with dementia were ultimately supported, too.

This statement symbolizes an important shift in thinking that expands on the mission of providing services for the person with dementia, to creating

In the past decade, however, physicians have become increasingly skilled in diagnosing Alzheimer’s and related

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services in collaboration with persons with dementia. Marilyn Truscott, a volunteer with the Alzheimer’s Society of Hamilton in Ontario, Canada, has outlined the following ways to become involved in Alzheimer’s organizations. As a person with dementia, she presented these and other ideas last year at the Alzheimer’s Disease International conference in Barcelona, Spain.

Society, call your local chapter and talk with them about possible volunteer opportunities.

Questions and Answers Q. Why can I remember things that happened a long time ago in my past, but I can’t remember what I did yesterday? A. Abnormal memory loss is the hallmark symptom of Alzheimer’s disease. As we age, our memory functions slow down and it can take longer to learn something or to retrieve information from our memory. One of the earliest symptoms of Alzheimer’s, however, is significant difficulty learning and remembering new information. This memory difficulty begins to affect daily organization and routine abilities. You may remember a surgery that you had twenty years ago, but forget that you have a doctor’s appointment today.

● Participate on Boards and committees ● Help with fundraising planning and activities. ● Evaluate programs, review documents relating to people with dementia for inclusive language, and use your understanding of the experience and viewpoint of people with dementia to review policies and literature. ● Participate in education programs for the public, caregivers, and health care professionals (doctors, nurses, etc.). ● Develop useful literature for the Alzheimer Society on subjects of interest, coping strategies, etc. ● Help out with advocacy programs ● to make changes in public policy and government funding.

If you think of the brain as a huge filing cabinet, we are continually filing new information, storing it, and then retrieving it at a later time when needed. Memories can be stored across many regions of the brain, but the small area known as the hippocampus is primarily involved in receiving new information and temporarily storing it before other regions of the brain move it into long-term filing. These memory processes happen through an elaborate

Everyone stands to beneﬁt from this inclusive partnership and we hope to see individuals taking more of an active role in their local chapters. If you are interested in becoming more involved with your Alzheimer’s Association or

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set of electrical and chemical impulses and connections in the brain. The earliest eﬀects of Alzheimer’s disease begin in the hippocampus when abnormal protein deposits, known as plaques and tangles, begin to interrupt electrical connections between brain cells. Although the hippocampus may receive new information temporarily, it loses the ability to store the information and get it into long-term ﬁling. You may be able to understand new information at the time when it is presented to you, or be well aware of something while it’s happening, but later when you try to retrieve the information, it simply isn’t there.

negative) may be remembered with little eﬀort. Consider the following: ● Events that have particularly strong emotions attached to them may take hold in the memory and last longer. ● Repetition usually increases the chance that an event or piece of information will get into long-term memory storage. That’s why a degree of routine is often important to persons with Alzheimer’s. ● If you are paying very close attention to something and concentrating on it with little distraction, you may remember it better. ● Memory can be cued. For example, looking at a picture of a person or event may help prompt more recollections. ● Stress and anxiety can make memory worse. So if you can’t remember something, try to take a few deep breaths, let it go, and chances are, it might come back!

Information and memories stored prior to the onset of Alzheimer’s can still be retrieved because they are already in your brain’s filing cabinet. Regions of the brain other than the hippocampus help to retrieve already stored information. These regions may not be as affected until the later stages of the disease. So a memory filed away from childhood can be retrieved, while a new experience that never got into storage cannot.

What’s in a Name? Discussing “Alzheimer’s Disease” By Naomi Boonstra Alzheimer’s Association, Australia Editor’s note: The Alzheimer’s Association of Australia has a national education and support program for people in the early stages of dementia and their families called “Living with Memory Loss.” We are grateful to Naomi Boonstra, an Early Stage Dementia Program Coordinator, and support group members, for sharing the

It is also common for people with Alzheimer’s to be able to retain some things in short-term memory while other things simply don’t stick. You may repeat the same question because you can’t remember the answer, yet a special event or occurrence (positive or

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following discussion from one of the support group meetings.

looked it up in her dictionary only to ﬁnd the word “madness” included as part of the deﬁnition. We took a look at the dictionary together and discovered that it was a well-loved dictionary which was about 40 years old, though still in excellent condition. It was decided that it was probably time for a new dictionary!

The Living with Memory Loss (LWML) program provides an opportunity for people with early Alzheimer’s disease and other sorts of dementia to come along (usually with a family member) to an information and support group where they can learn more about the disease itself, have an opportunity to ask questions, and to meet with others who are in the same position as themselves. People with dementia consistently say that the opportunity to know they are not alone in dealing with this disease is the most important thing gained from the program.

There is a wide variety of views amongst LWML participants about the disease names. Some participants state that they don’t like the word “Alzheimer’s” and prefer the term “dementia.” For others, they feel “dementia” is more oﬀensive and they favour the use of “Alzheimer’s” The diﬀerence in preferred term does not appear to relate to things like age, gender, or diagnosis, and really does appear to be more a matter of personal preference.

One of the things that people with dementia frequently talk about in the program is the name of the disease: “What is the diﬀerence between Alzheimer’s disease and dementia?” Many people confess to not being aware that there is a diﬀerence before commencing the course. We go on to talk about dementia as an umbrella term covering a range of diseases which result in gradual loss of brain function with memory loss often being the prime symptom. Alzheimer’s disease is discussed as the most common of these diseases.

Many times the discussion about the disease name leads to the question, “Why is it called Alzheimer’s disease?” At a recent support group meeting, I asked participants what it is that they dislike about that name. One gentleman in his 80’s explained that Alzheimer’s disease implies something that is contagious and involves sores. His mother always taught him to stay away from someone who has a disease “or else you’ll catch it.” In his opinion, it is the disease aspect of the name which is problematic.

One participant spoke of her distress when upon being diagnosed with Alzheimer’s disease she went home not really knowing what that meant. She

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As a result, the group began to discuss the question of what they would prefer it to be called. After some moments of reflection, suggestions such as Alzheimer’s complaint or Alzheimer’s syndrome were raised. Another participant asked, “Why does it have to be called anything at all? Why can’t we just call it memory loss?” I was very keen to hear what participants thought of this idea as many professionals have said to me that they are reluctant to discuss a diagnosis with someone because of the fear and anxiety attached to the term “Alzheimer’s disease” or “dementia.” After some discussion, the group decided that memory loss is not sufficient as the name must in some way reflect what it is that people are experiencing and distinguish this type of memory loss from other types, such as those caused by reversible conditions or by an acquired brain injury, for example. The group members agreed that the name of the disease helps to keep in mind exactly what it is about. The group also decided that the word “disease” is the right word to be used here because, as an ex-nurse in the group pointed out, the condition really does meet the medical criteria for a disease, which the Australian Oxford paperback Dictionary (1996) defines as an “unhealthy condition caused by…faulty functioning of a bodily process.”

Timer’s disease.” Someone else told us that they had always thought that was actually what the disease was called. “No, it was a doctor, wasn’t it?” asked another group member. The group was informed that the disease is, in fact, named after a German doctor, Dr. Alois Alzheimer, who was the ﬁrst to describe it in 1907. A number of group members were surprised to learn this information for the ﬁrst time. After more discussion, the group decided that really the name of the disease itself is not the problem. The problem is the lack of knowledge of others – most people just don’t know what Alzheimer’s disease is. So now our conversation leads into the question of how to go about changing that situation!

Summer Tips With so many people experiencing one of the harshest winters on record, it might be hard to imagine that summer is just around the corner. In the northern hemisphere, temperatures will rise throughout the next few months and for most people, the opportunity to enjoy being outdoors is a welcome relief. As the summer advances, however, temperatures can become uncomfortably or dangerously warm. Older people are at increased risk of dehydration or heat exhaustion and both of these conditions can increase confusion for people with Alzheimer’s disease. Be aware of any of the

At this point another group member raised the issue of the joke about “Old

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● Wear a hat to protect your head from intense heat and sunlight. Use sunscreen.

following symptoms that could indicate dehydration or heat exhaustion: Pale or clammy skin; excessive sweating Nausea or vomiting Headache Cramps in arms, legs, or abdomen Lack of energy Sudden or unusual increase in confusion

● If you are feeling at all faint or nauseous, rest immediately in a cool or shady place. ● Make sure that home fans or air conditioning systems are working.

The following tips are important when enjoying these summer months:

● Go out in the morning or late afternoon to avoid the hottest part of the day.

● Drink plenty of ﬂuids. Take ﬂuids with you on all outings and keep extra bottles in the car as needed.

● Seek medical attention if any of the above symptoms persist

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VOLUME 9

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Volume 9, Number 1: August-October, 2003 Finding Meaning in Alzheimer’s by Victor DiMeo, Ph.D. New Progress Report on Alzheimer’s Disease Vaccine Update Meeting the Needs of Persons with Early-Stage Dementia Suggestions from Persons with Early-Stage Alzheimer’s for the Medical Profession The Culture Bus by Darby Morhardt, LCSW and Hedy Ciocci, RN, BSN Volume 9, Number 2: November-January, 2004 Children, Adolescents, and Alzheimer’s: Helping the Young People In Your Life Persons with Alzheimer’s Reflect on Alzheimer’s Research Slow Down the Fast Track by David Skipper Volume 9, Number 3: February-April, 2004 In My Own Voice by Vaugh Collins Nutritional Brain Boosters Separating Fact from Fiction

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An Early-Stage Dinner Dance Volume 9, Number 4: May-July, 2004 Understanding the Symptoms of Alzheimer’s Memory Loss (Amnesia) Independence: How to Assist a Person with Memory Loss by Helen Nowacki Award Winners in the News A Life Beyond Diagnosis by Bernie and Barbara Shapiro The Coffee House: An Early Memory Loss Support Group

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Volume 9, Number 1: August-October, 2003

see a lot of people going out and having fun and enjoying and having happiness and I could do that too. And I do at times. But there is a lot of pain and loss involved. It’s terrible that I say that, but it’s real. And I’m healthy, I think. I feel healthy. I’m 84 years old and I feel good, but at the same time I feel empty – like something has been taken away from me and I can’t have it back. So now I’m looking for a way to solve that. Some people with Alzheimer’s are happy because they have something good going on with them inside or with their family. A lot of them keep busy and that’s important, but what I don’t like is that we’re getting more isolated from what people are doing and what they’re like. A lot of people are being left like they are unknown. I’d like to help people ﬁnd meaning instead of just sitting home and disappearing. I would like to be part of something where I belong and it has meaning to me. Margaret Mead told about somewhere where the culture celebrates people who have problems and gives them a feeling of expertise and knowledge and health whereas we in our society, we make them sick. If you’re diﬀerent and unusual, you’re made to feel like there is something wrong with you. So I feel

Finding Meaning in Alzheimer’s By Victor DiMeo, PhD Editor’s note: Victor is a retired clinical psychologist and talented jazz musician who was diagnosed with Alzheimer’s disease in 2000. The following essay has been transcribed and edited from a tape recording of Victor’s thoughts as he shared them with his wife, Pat. Talking into a tape recorder served as an excellent way to express his thoughts and have a lasting record of them. I’m getting a feeling that this is a long trip - a long battle to conquer Alzheimer’s. It costs me a lot and I don’t mean money. What’s happened to me is the loss of self. I’m sort of searching for a way of surviving. I’d like to be useful and worthwhile. I would like to help others. Very few people can understand what Alzheimer’s is. You feel that something about you has changed – that some parts of you have been taken away. I feel empty sometimes. Some people with Alzheimer’s are having a good time and are happy, but I’m not there yet. I can

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we’re on the wrong track. We don’t have to live with that. We should help people to feel good about who they are. Why don’t we create a society in which these people are given some meaning in who they are? Let’s not abandon them. So we have to change that to where people with Alzheimer’s feel part of something regardless of whether they remember a name of something. We need something in our society to bring people with Alzheimer’s into a more positive view. Some people feel down and ashamed because they have Alzheimer’s – I’ve talked to people who don’t want to mention it. People with Alzheimer’s are feeling they have been left out of life and that’s hard. Alzheimer’s is a disease- it doesn’t mean you’re dead or no good.

his activities that reﬂect his positive actions and contributions towards these goals You volunteered to be interviewed by medical students at the University of California, San Diego, so they could have direct experience interviewing someone with Alzheimer’s disease. Can you tell us about that experience? I felt that I could help the students to realize what the problem is and for them to become better doctors. My purpose was to tell them and show them what a person with Alzheimer’s is going through. I also said, “Don’t become a doctor if you don’t care about people. You’re hurting them and your profession. Go ﬁnd something else to do. You must show that you care about people.” I want them to be sensitive to what human beings are. After the interview, the head doctor shook my hand and said he appreciated the interview and that I had done a good job.

People should be celebrated for being human. So we’ve got to do something about that for me and for others. I’d like to see something happen where it’s brought more to the public. Why not share anything I learn about Alzheimer’s and help people to work with it and learn from it? There is much work being done throughout the world with research studies. There is hope that a solution will soon be forthcoming. I would like to take part in the cure.

You also volunteer as a research subject at the University’s Alzheimer’s Disease Research Center. Why did you decide to participate in research? I feel that I can live longer by participating in research. I don’t agree to die, but I agree to donate my brain in case I do. I’m not clear what death is yet. I haven’t ﬁgured it out yet. But, you die, so leave something of yourself.

Editor’s note: Victor speaks eloquently about the importance of creating a more sensitive society and ﬁnding ways to have meaning and purpose in the face of Alzheimer’s. Lisa Snyder interviewed him about a number of

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Leave something of yourself for the world so that you can participate in its future.

things for them and for myself. I support us expressing ourselves. I enjoy hearing from others as they open up about their thoughts and feelings. My wife also comes to the group at the same time and participates with the other spouses in their own group. I think she enjoys it. It’s beautiful to see the changes in people. By your action, somebody gets better. Because of your participation, somebody feels good again. Because of my participation in the Alzheimer’s program, I have been experiencing much help ﬁnding my way through this disease. On some days I feel loss and pain. Yet at other times, I discover some meaning in my life because of feeling the support of others, including the group members, leaders, and the caregivers who all provide valuable encouragement. Being in the group makes me feel like I’m somebody. This experience makes me feel more alive and human.

You attend a weekly discussion group called the Communications Club. What do you do at the Club?

I go to the Communications Club group and I don’t do much talking. But I’ll say a few things and the facilitator is able to take it and put it up on a board. It’s a topic and discussion group. There are more people in this group than in my support group and it’s diﬀerent from the support group. The facilitator of this program structures a lot and the support group is more free expression. I like the diﬀerence. Both of them give me help. Both of them help me with my communication.

New Progress Report on Alzheimer’s Disease The National Institute on Aging (NIA) funds a great deal of research aimed at ﬁnding ways to prevent, treat, and cure Alzheimer’s disease and related dementias. The NIA funds over thirty nationwide Alzheimer’s Disease Centers where ongoing research and clinical trials (drug studies and other treatment investigations) are conducted. Each year, the NIA publishes an excellent progress report that

For the past year, you have participated in a weekly support group for persons with Alzheimer’s. How has that been for you? I’m a very caring person and the support group brings me closer to other people. It makes me feel I want to do

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summarizes recent updates in research conducted or supported by the NIA. This year’s 48-page progress report summarizes research updates from years 2001-2002. The report focuses on new research that is attempting to answer three key questions:

and is undergoing FDA review in the United States. It may be on the market by mid-2004. Memantine has been shown to be an effective drug for persons with advanced Alzheimer’s disease (AD) in helping to slow further progression of the disease or in some cases, help persons gain some mild improvement in functioning and thinking. Unlike Aricept and Exelon that work to regulate a brain chemical called acetylcholine, Memantine helps to regulate a different brain chemical affected in AD called glutamate. Glutamate has an important role in learning and memory. Although Memantine was initially tested on more severely affected persons, many people in the earlier stages of AD have expressed interest in the drug and have been eager to see if it would help them as well.

● What happens in the brain to cause the shift from normal aging to Alzheimer’s disease? ● Are there certain factors that increase the risk of or protect against developing Alzheimer’s? ● What can be done to slow the progression of Alzheimer’s or to lessen the symptoms or effects of the disease? The Progress Report covers important discoveries that have been made in genetics and the biology of Alzheimer’s, risk factors for the disease, and advances and investigations in treatment. A final section titled “Outlook for the Future” reflects on the key findings from the “explosion of knowledge” about Alzheimer’s that has occurred in the past 25 years. These findings form the foundation for many current exciting and hopeful investigations.

In a recent study sponsored by the makers of the drug (Forest Laboratories), persons with mild-moderate AD who were already on Aricept, were enrolled in a placebo-controlled trial to determine whether adding Memantine to their treatment would provide any added beneﬁt. After six months in the study, those treated with both medicines did not show any improvement over those treated with Aricept alone. These results suggest that Memantine does not provide an added beneﬁt to persons with mild AD if they are already taking Aricept. Forest Laboratories is now

Research Updates Memantine Combined with Aricept is Not Eﬀective in Treating Mild-to-Moderate Alzheimer’s Memantine is a drug that is currently approved in some countries in Europe

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awaiting the results of a placebo-controlled study currently underway that will determine whether Memantine taken alone is as eﬀective as Aricept for persons with mild-moderate AD. In the meantime, while we await these results, persons with mild-moderate Alzheimer’s who are taking Aricept (or Exelon or Reminyl) need not be in a hurry to add Memantine to their medications.

with late-onset AD. Scientists will then be able to use this data bank in their efforts to discover new genes. The project will need the assistance of 1,000 families nationwide who will donate blood or tissue samples to the bank. For a family to participate, there must be at least one pair of siblings who have late-onset AD and at least one other affected or unaffected relative who is willing to participate. Participation involves a neurological exam or collection of medical records and the donation of a blood sample. This sample will be made into a cell line (a family of cells grown in a laboratory) so that qualified scientists can study the DNA of the cells for many years to come. If a sibling has died of AD but participated in an autopsy program through a federal Alzheimer’s Disease Research Center, brain autopsy tissue may be used instead of a blood sample.

New Genetics Project About 90% of people with AD acquire the disease after the age of 65. Although some genetic markers have been determined for persons with young-onset disease (those who develop AD before age 65), the genetics of the far more common late-onset disease are less understood. Researchers have identiﬁed a genetic variant of one protein, apolipoprotein E (apoE), as a risk factor for some late-onset individuals, but scientists feel strongly that there are other undiscovered genes involved in late-onset AD. Discovery of these genes will potentially open up many more areas for treatment. While progress in genetics has been made, there is much more to be done and a new project underway aims to speed up these discoveries.

The conﬁdentiality of all participants is fully protected and a detailed discussion of informed consent will address any questions or concerns participants may have about the project.

Vaccine Update Last year, Elan Corporation’s international trial of an experimental Alzheimer’s vaccine (AN-1792) had to be interrupted due to some dangerous side eﬀects experienced by a small group of study participants receiving

The National Institute on Aging and the National Alzheimer’s Association are collaborating to create a large, national bank of genetic material and data from families who have multiple members

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the vaccine. The vaccine aimed at helping persons with mild AD to develop protective antibodies to beta-amyloid, the damaging protein found in the brains of persons with the disease. Due to the risk of side effects, study participants could no longer receive doses of the vaccine. The study coordinators did, however, continue to monitor and evaluate the study participants and a new analysis of a small portion of results from the vaccine trial were recently published in the journal Neuron. The paper reports on data collected from one of the 28 study sites where a total of 28 out of the study’s 360 participants with AD were enrolled. Nineteen of the 28 individuals at this site developed antibodies to amyloid protein as a result of the vaccine. In follow-up testing over a one-year period, these individuals scored significantly better on a test of memory and other thinking functions than those who did not develop antibodies. These initial findings in a very small sample of the 360 study participants suggest that there is reason to be hopeful about the benefits of a vaccine. Elan Corporation is hard at work on developing a new version of the vaccine that will not produce the dangerous side effects experienced by some in this study. We will keep you updated as this very important research develops.

Meeting the Needs of Persons with Early-Stage Dementia Katie Maslow of the Alzheimer’s Association and John Selstad of the National Chronic Care Consortium recently directed a project to investigate the type and adequacy of information persons with AD and their families receive from doctors and other service providers. The investigators looked at information topics including the diagnosis and treatment of dementia, legal and financial issues, managing daily activities, coordinating support from family and friends, and use of the Alzheimer’s Association services. Findings from interviews with 746 care partners and 226 persons with AD revealed that for each of these topics, care partners were significantly more likely than the person with AD to have discussed issues with a doctor or other service provider. While care partners were more likely to feel they had inadequate information about legal and financial issues, persons with AD were more likely to feel that they had inadequate information about managing daily activities and services offered by the Alzheimer’s Association. Study findings confirmed that persons with AD often do not initiate contact with others about important issues and that the Alzheimer’s Association needs to increase outreach efforts to persons with the disease.

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circumstances and work with your care partner to develop ways to prevent repeated conﬂict. Make sure to be evaluated for depression as needed. Don’t hesitate to seek professional help from an Alzheimer’s specialist if you or your care partner are concerned about mood or problems with temper.

Questions and Answers Q. Is it true that Alzheimer’s disease could make me become aggressive? A. Some persons with Alzheimer’s can become more aggressive with the progression of the disease, but this is a complex issue that can often be prevented. There are many things that can prompt aggression. Having memory loss and changes in functional ability can be very frustrating and persons with AD (and their care partners) can easily lose their tempers. If you are rushed or pressured to try to do or think about too many things at once, this might lead to increased irritability or hostility. As the disease advances, persons with Alzheimer’s need help with bathing, grooming, and personal care. These are often very private activities and this is the area where aggression, if it happens at all, is most likely to occur. Common reasons are that the person feels rushed, vulnerable, or confused, or feels his or her dignity is being threatened. As a result a person with AD may lash out as a means of self- protection. Research also indicates that persons who are more verbally or physically aggressive are also more likely to be depressed.

Suggestions from Persons with Early-Stage Alzheimer’s for the Medical Profession Share the diagnosis with me. Let me know what to expect down the road – but not all at once. Let me know what to expect at each medical appointment. Give me some positive feedback when you do tests. Don’t just tell me what I did wrong. Emphasize the things I can still do well. Don’t address your conversation to my family as if I’m not there. Let me participate and let you know what I need. Ask me! I need medical personnel who are willing to take the time to talk with me, to allow me to share my fears and concerns.

Consider the following: Do you feel like you get angry easily? Does anyone else think that you are easily angered? What do you do when you feel frustrated or angry? Is it helpful? Try to identify challenging

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Do not treat me like a textbook case. I was a person before I had Alzheimer’s disease.

membership as an ongoing group since 1998. Currently 12-15 participants attend the early-stage memory loss support group every week. This group shares with one another the similar changes they are experiencing, how they are coping with these changes, and the relief to know they are not alone. A typical group is often punctuated with humor and a strong sense of cohesion and camaraderie.

I am not an Alzheimer person, but a person with Alzheimer’s disease. Tell me where my family and I can go for support. Refer me to the best specialists if you are not a dementia specialist. Share new treatments, research, and hope with me. Thank you to the members of the early-onset support group of Massachusetts and to coordinator Elaine Silverio, RN, for the opportunity to reprint these suggestions.

The Culture Bus By Darby Morhardt, LCSW and Hedy Ciocci, RN, BSN

As the bonds among group members have strengthened, so has their desire to spend time together outside of the weekly group sessions. However, the lack of structured services and programs for those in the early stages of Alzheimer’s disease impedes ways to do this. Following several discussions that were inspired by a member of the support group, the CNADC along with the community-based Council for Jewish Elderly (CJE) developed a program called the “Culture Bus.” The Culture Bus meets every other week for a total of ﬁve outings. The 6-hour day

The Cognitive Neurology and Alzheimer’s Disease Center (CNADC) at Northwestern University Feinberg School of Medicine in Chicago has sponsored separate early-stage support group for individuals with Alzheimer’s disease and their families since 1997. Although it initially began as a structured time-limited group of 8 sessions, an open weekly ongoing group was formed at the request of the participants. This group has continued to meet with natural changes in

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(10:00am-3:00pm) includes the drive to a cultural destination such as a museum, botanical garden, planetarium, or historical society. Once there, participants usually have a tour with a docent followed by lunch, discussion, and then the return home. The group participants pay a fee for each outing to cover the transportation cost, lunch fare, and any museum or organization entrance fees.

Volume 9, Number 2: November-January, 2004 Children, Adolescents, and Alzheimer’s: Helping the Young People In Your Life We usually think of Alzheimer’s as a disease that primarily aﬀects persons over the age of 60. We focus our eﬀorts on the diagnosed person or, often more prominently, on the spouse or adult child who may be providing some care. In many cases, however, one family member having the disease in some way touches the whole family across three or four generations.

Many group participants share a love of culture and history and are delighted to immerse themselves in the rich cultural opportunities Chicago has to offer. Due to the overwhelmingly positive response, CJE plans to offer the Culture Bus each Fall and Spring for members of the support group. CJE will work with other support groups and social service agencies to offer this service in other areas of Chicago, as well.

If you were diagnosed with Alzheimer’s or a related disorder at a young age, you may have your children or teenagers living at home. Or, perhaps you have relationships with grandchildren, nieces, or nephews. Outside the family, you may have young persons in your neighborhood, or have contact with them through activities in your community. Regardless of the relationship, chances are there will be some short or long-term contact with younger people in your life as you live with Alzheimer’s. Although a growing number of education and support services exist for spouses or adult children who have a loved one with Alzheimer’s, there is often very little information or support available to younger people. Children and adolescents may need your help in

The Culture Bus is an innovative way for persons with early-stage Alzheimer’s disease to participate in mentally enriching experiences, share cultural activities with others, enjoy outings, and have opportunities to make new friends. Although this program was inspired by a member of the early-stage support group, it would not be possible without the generosity of the Council for Jewish Elderly and the use of one of their Shalom busses for the Culture Bus outings.

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better understanding some of the symptoms of Alzheimer’s. They may also need your support as they learn their own ways of coping with and responding to any changes that you may be experiencing as a result of the disease.

Just as young persons differ in their responses to the person with Alzheimer’s and the changes that may be happening in the home, persons with Alzheimer’s also differ in their responses to young persons. Some individuals are more easily overwhelmed with the onset of memory problems and the energy of youth can be tiring or irritating. Others with dementia find that young people are a real highlight of their lives and they value time spent with children and adolescents. Some communities have developed innovative intergenerational programs specifically to help bring young people together with persons with Alzheimer’s for socialization and activity. How do you respond to the young people in your life? Are you satisfied with the relationships? Each person and family is different, but if you want to reach out to the younger people in your family or community, here are some ideas: Young people often notice memory changes in their family member or elderly friend, but may not know if it is alright to ask about the problems or to discuss them. Encourage young people to ask you any questions they might have about your memory or Alzheimer’s disease. Young children can be especially direct, so be prepared for candid questions! Provide written information for them so they can better learn about the disease.

Young persons may respond to Alzheimer’s in a number of different ways. Researcher Diane Beach, interviewed young persons about their experiences having a family member with Alzheimer’s and found that they discussed both positive and negative experiences. Some young people felt that the bonds between their family members were strengthened as everyone worked together in the face of Alzheimer’s. Some children commented that their families spent more time together and developed a good sense of humor together as a positive way of responding to some of the challenges of the disease. Other young persons talked about some of the difficulties that they experience as a result of a family member having Alzheimer’s. Some felt that they actually had less time as a family or with their parents because some of that energy was now going into helping care for the affected family member. Some children didn’t know how to explain their loved one’s Alzheimer’s to their peers and felt their friends didn’t understand what they were experiencing.

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● Maintain a sense of humor. If you are less stressed about Alzheimer’s, the young person will probably feel less stressed, too. Laughter is always good medicine and often helps to bring people closer. ● Think of fun things that you can do together. Consider creating a photo album or scrapbook, playing games, gardening, or taking walks together. ● Some adolescents who have taken on new responsibilities in helping a loved one with Alzheimer’s report a positive experience in being needed and valued. Many children and teens want to be of help, but don’t know what to do. If a young person wants to be of help, think of ways they might be able to assist you. This could be running an errand or making you a cup of tea. Show your appreciation so that they feel valued and useful. ● Call your local chapter of the Alzheimer’s Association to see if there are any community programs that serve the education and support needs of children and adolescents. Few chapters have programs, but your call might inspire your chapter to start one!

use the internet, and this site in particular, as a resource for current and reliable information on health and medical research. The site uses large print and also will have a talking function which will allow those who have difficulty reading text to have the contents read to them. The site features an excellent section on Alzheimer’s disease and also plans to cover important topics including exercise, complementary and alternative medicines, and hearing and vision loss. To investigate this informative web site go to http://www.nihseniorhealth.gov. The National Alzheimer’s Association has recently updated an important pamphlet entitled, “Steps to Understanding Financial Issues-Resources for Individuals with Alzheimer’s Disease.” This 23-page pamphlet addresses issues including how to pick and choose persons to help manage finances, understanding long-term expenses and options for financial planning, and evaluating various financial resources. There is an important section for those with mild Alzheimer’s or a related dementia who are still working. This section refers to the Americans with Disabilities Act (ADA) and how it can be applicable. Various forms of government assistance are also referenced in the pamphlet along with other useful literature.

Helpful Resources The National Institutes of Health (NIH) has launched a new talking web site with formats and topics designed to meet the needs of older people. The web site aims to encourage seniors to

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After a long wait, the latest Alzheimer drug, Memantine, has been approved by the US Food and Drug Administration (FDA) and is expected to be available in pharmacies in January, 2004. Memantine will be marketed under the brand name, Namenda. Namenda’s FDA approval is based on an extensive review of the safety and efficacy from clinical trials conducted in both the United States and Europe. Namenda has been shown to be an effective drug for persons with more moderate-to-advanced Alzheimer’s disease (AD) in helping to slow further progression of the disease or in some cases, help persons gain some mild improvement in functioning and thinking. In clinical trials, Namenda has been safe and well-tolerated. As with most medicines, there is risk of side effects including dizziness, headache, constipation, and confusion, so it is important to have a physician monitor the prescription and use of this medication. As we discussed in the last issue of Perspectives, Namenda has not yet been shown to be effective for persons in the earlier stages of AD.

MAILBOX We heard from a few readers recently who expressed appreciation for Victor DiMeo’s essay “Finding Meaning in Alzheimer’s” in the last issue of Perspectives. One man wrote, “I enjoyed the ‘Meaning’ article by Victor DiMeo. What a thoughtful and wise fellow.” It is always nice to hear encouraging feedback about the newsletter. One woman writes, “Perspectives is great! My husband enjoys reading it and I do, too. It lifts us.” And from Marcia Reish, an early-stage support group facilitator in Denver, “I enjoy the newsletter so much and glean new information and insight from each issue.” We often receive feedback that readers value the research updates in particular. We try to provide up–to-date information that is both hopeful and realistic as it is not always easy to tease out myth from fact in many media news clips about memory, aging, and Alzheimer’s disease. If you have heard or read a news story that you have any questions about, feel free to send it into Perspectives and we will do our best to research the article and provide you with as much information as we can about its content.

Exercise Can Improve Mood and Quality of Life for Persons with AD Linda Teri, PhD and colleagues at the University of Washington, Alzheimer’s Disease Research Center in Seattle recently published ﬁndings on their study of the eﬀects of exercise on AD. The researchers followed 153 persons with AD over the course of several years. Some of the research study

Research Updates Memantine Expected to be Available in January, 2004

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participants (who were at varying stages of the disease), were randomly assigned to an in-home exercise program that focused on strength, balance, and flexibility training. For about 30 minutes a day, these participants went for walks, stretched, or used light hand weights. The care partners were also taught techniques to encourage and help with the exercise program. Compared with the control group that did not do any particular exercise routine, the persons with AD who exercised were in better physical shape and had lower rates of depression. When the researchers followed up two years later, they discovered that those who were still physically active maintained these benefits. They also showed less signs of physical frailty which made them less prone to falls, fractures, and hospitalization. Although the benefits of exercise are not news to most people, some persons with AD become less active over time, and this study reinforces that it is important to maintain some form of routine physical exercise.

Anti-Inflammatory Drug Update Researchers have determined that there is inflammation that occurs in the brains of persons with Alzheimer’s disease. It is unclear what effect this inflammation has on disease progression, but researchers have long wondered whether use of an anti-inflammatory such as ibuprofen could help ease this inflammation and slow down progression of AD. So far, clinical trials of anti-inflammatories have not shown a significant benefit, but this may have been due to the particular anti-inflammatory used in the studies. A new animal model study on the effects of an anti-inflammatory called R-flurbiprofen may be more promising. Scientists at the Mayo Clinic in Jacksonville, Florida and at the University of California in San Diego compared the effects of a standard ibuprofen and R-flurbiprofen in mice genetically modified to develop AD. The mice treated with the R-flurbiprofen performed much better on tests designed to evaluate their memory. When the researchers examined the brains of the mice at death, those treated with R-flurbiprofen had far fewer of the damaging amyloid plaques in their brains than those on the standard ibuprofen. Tests are now underway in the US to test the tolerability and safety of large doses of R-flurbiprofen in humans. Next year, studies will evaluate the effectiveness of this anti-inflammatory on persons with AD.

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Similar trials are underway in Great Britain and Canada. We’ll keep you updated as these trials progress.

profession, do not see them as a whole person anymore. Group participants determined that an important research question might be: “How can we reduce marginalization among persons with Alzheimer’s as well as among their family members?”

Persons with Alzheimer’s Reflect on Alzheimer’s Research Participants in the support group for persons with early-stage memory loss facilitated by Darby Morhardt, LCSW, at the Cognitive Neurology and Alzheimer’s Disease Center, Northwestern University Feinberg School of Medicine in Chicago, recently discussed psychological and social issues they would like to see researchers address. Their discussion, including their numerous insightful quotes, is published in the international journal Alzheimer’s Care Quarterly, Volume 4, Issue 3. An important theme identified by the persons with memory loss in this group is that of “marginalization.” Marginalization is defined by the group as a process whereby others view them as “slipping away” and not being the person they once were. This can result in feeling ignored, not being taken seriously, or being left on the “margin” of life. Support group members described incidents in the doctor’s office, in public, and in the media where they have experienced marginalization. The loss of independence that can result from symptoms of Alzheimer’s can also result in this experience. Family members also identified with the issue of marginalization. Some felt that they are now defined as the “caregiver” and that others, especially in the medical

The second theme that emerged from group discussion was the “need for a sense of belonging.” Participants discussed the value of having a support group of people with similar experiences. They also discussed the sense of empowerment they experience as a group and the importance of having a voice in Alzheimer’s advocacy. Family members also reported feeling isolated in the process of providing care for their loved ones. They were uncertain when they should seek help in the process and from whom to seek that assistance. They felt rejected or isolated from previous social circles. This need for belonging for persons with memory loss and their families is essential to well-being. They deﬁned a second research question, “How can we help to promote a feeling of belonging?” Although we often focus on biomedical research updates in Perspectives, these questions are essential areas of investigation and it is commendable that members of the support group and their facilitator worked to publish these reﬂections. As for their research question, “How can we reduce marginalization among persons with

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Alzheimer’s?” By their eﬀorts in making their voices heard, they’ve just taken an excellent step towards answering that question.

to remember what you were saying – you won’t feel so rushed. After that, they can try to help you.” Jack “I admit it – I’ve just had a senior moment.” – Kay

BRAINSTORMING We asked persons with Alzheimer’s, “What do you do when you lose your train of thought or can’t ﬁnd the word you are looking for?”

“It’s embarrassing when you’ve known someone for years and can’t remember their name. It’s also tough when you’re telling a joke and forget the punchline….I usually ﬁnd it helpful when others ﬁll in for me.”– Larry

We are grateful to members of support groups and their facilitators around the United States and Canada for discussing this question and providing the following responses:

“I say, ‘Alzheimer’s at work’ so people know.” – Ann “If you can’t ﬁnd the word you’re looking for, use a diﬀerent word.” – Ray

“I keep quiet for a few minutes and hope it comes back. It usually comes back to me after a few minutes…. A prompt (such as a word or letter) helps.” - Anita

“I try to have a good laugh about it. I’ve become very good at just letting it go.”Jeannette

“Turn the conversation over to the other people– Ask them something about themselves.” - Richard

“If I’m answering a question and lose my train of thought, I will ask the person inquiring to repeat the question, admitting that I forgot what we were discussing. Sometimes the other person will redirect my thoughts and this can also work for me. I can get oﬀ the subject very quickly and without redirection, I tend to ramble. When nothing else works, I just go on to another subject – jumping trains so to speak….I like to talk and little is going to keep me from talking when I want to!” - Chip

“I suggest not volunteering for lengthy speeches!” - Art “Ask the other person, ‘What were we talking about?’” – Jean “Ten second rule: If you can’t ﬁnd the word or idea in 10 seconds, encourage family or friends to help. You’re probably frustrated by then anyway. Give yourself the ﬁrst ten seconds to try

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“I stay to myself.” – Bernie

Slow Down the Fast Track By David Skipper

“Depends on who I’m talking to. People are more considerate of our foibles now that Alzheimer’s has reached general knowledge status.” -Renee

Editor’s note: David Skipper lives with his wife, Jean, in Western Australia. This article was originally printed in the September 2003 issue of “NEST – A Newsletter of the Early Stage Dementia National Network” in Australia. We are grateful to David Skipper and the editors of NEST for permission to reprint David’s article in this issue of Perspectives.

“I say, ‘I’ve got Alzheimer’s disease. I can’t ﬁnd the word.’” - Herb “I go through the alphabet: A, B, C, till it comes.” - Bill

In August, 2002, at the age of 59, I was diagnosed with Alzheimer’s disease. This news left me numb with shock. It took about 24 hours for this feeling to turn to anger, fear, and very strong denial.

“I swear a little bit.” – Chuck “I don’t put so much pressure on myself and relax.” – Pat “’I talk around the idea, or just stop talking, wave my hand and say, ‘Oh well.’” – Adrianne

A few weeks later, I had reached partial acceptance of my condition, but I totally refused to allow anyone other than my wife and two children to be told my diagnosis. My daughter commented, “Dad, you must feel like your life has been fast tracked.” My response was, “Yes, that’s exactly how it feels.”

“I don’t lose words – I forget the idea. Then I say, ‘Well that’s one I missed.” – Frank “I sit still and meditate and eventually it will recycle if it’s up there….There was a time when it bothered me, but I learned to let it come out when it comes out.” HR

In January, 2003, positive results from a further series of cognitive tests allowed me to continue with the Reminyl medication. Although many side eﬀects can occur while taking this drug, I was lucky and experienced none. My wife read in the press that the Alzheimer’s Association of Western Australia was running a course called Living with Memory Loss. And when she asked me

“Try not to get angry with yourself. You can’t help it.” - Denise

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if I was willing for both of us to attend, I said, “Yes.”

Association Western Australia. These I greatly enjoyed and was amazed at how much interest was shown by the audience. I believe Reminyl has given me back clear thinking. I remain focused and can look back now and say that if you do feel fear of a situation, your life then becomes fearful. If (whilst maintaining respect for any condition) you can reach acceptance, you are rewarded with a far greater quality of life.

My wife and I attended the course along with three other couples. The course is designed so that the client and the client’s support person (spouse, friend, or relative) attend the meetings. The six-week course played a signiﬁcant role in helping me come to terms with my condition. My wife, Jean, also derived some beneﬁt by meeting and talking to other support people.

Volume 9, Number 3: February-April, 2004

My biggest hurdle was to overcome my fear of letting others know I had Alzheimer’s disease. After attending Week 3 of the course, I suddenly realised that refusal to share with other people that I have Alzheimer’s disease was not only causing me great unnecessary pressure, but more importantly, pressure for my wife. Suddenly I found it a lot easier to discuss my condition with family and friends, even to the extent of going on TV with Jean for a public relations awareness segment on Channel 7’s Today Tonight. Talk about exposure! I felt a huge burden was oﬀ my shoulders now that I had ‘gone public.’ I realised it had opened my ideas to more positive thinking, and therefore, I was taking control of the ‘fast track.’

In My Own Voice By Vaughn Collins Editor’s note: Last year, I had the privilege of meeting Vaughn Collins in Seattle, Washington, for their Alzheimer’s Association chapter’s annual Alzheimer’s Education Conference. I facilitated a panel of persons with Alzheimer’s who shared their extraordinary insights and experiences with the audience. Vaughn was on the panel and he and his wife, Rosella, have graciously consented to have an edited version of his presentation reprinted in this issue of Perspectives. I am 74 years old (born in 1929 and must have caused the great depression)! I am a husband, father, grandfather, brother, and uncle. I was born in the Pennsylvania coal mining country but our family moved to Bremerton, Washington, during World War II. My

I was given the opportunity of doing some public talks about Alzheimer’s at retirement villages, together with a coordinator from Alzheimer’s

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mother died post childbirth when I was seven and my father never remarried. Our family was very close and life was rather hard.

I don’t remember my early not remembering, but my wife says that starting about four years ago, blocks of my long-term memory were lost or being lost. In her words: “Vaughn had been a walking encyclopedia. I would frequently ask him some question about geography, history, science, or current events and he’d think for a moment and generally come up with a reputable answer. As time went on, he began answering my questions with ‘I don’t know.’ Knowledge and facts were missing, but also certain events in our experiences together that he could not remember. We went to a primary care doctor who sent us to a neurologist. Alzheimer’s was the diagnosis and Vaughn immediately started on Exelon.”

After graduating from high school (Ballard, ’46) and then getting my life together through five years of Bible School, I left for Southeast Asia at age 23 with a missionary agency. For ten years, I crisscrossed Southeast Asia and South America. Then at age 35, I entered the University of California at Berkeley to study Linguistics. Remember the free speech movement? That was my welcome to Berkeley. I finished my PhD dissertation in 1975 after four years in Indonesia. But much more important was the Assistant Professor of Nursing from UC San Francisco whom I met early on! Rosella and I married in 1967. Then with our little son, we sailed to Singapore in 1970 and spent the next 28 years in Indonesia. I used my interests in linguistics and Bible translation and taught Linguistics and English in a university in Sumatra. So what does all of this have to do with Alzheimer’s? The missionary organizations I was with imbued me with two values that are helping me and my family: First, respond positively to negative challenges because God is bigger than every problem. Second, prayer works and gives significance to life. Prayer (mostly for others and the world) is currently the most important work I do or have ever done.

My advice to others is to face the problem head on and be open with

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family and friends. It helps me to have the love, support, and understanding from my immediate and extended family and close friends. My wife Rosella agrees that from the very beginning, we have not tried to keep the Alzheimer’s experience secret. This part is from Rosella: “We sat down with the family and discussed each stage in the diagnosis and the probable future. Vaughn’s primary care doctor is upbeat and realistic. Our lawyer, seen only a few times to handle all legal aspects, was reassuring and understanding. He is available to help down the line if major changes need to be considered. We tell friends that Vaughn has mild Alzheimer’s so please treat him normally, but any details need to come to Rosella. Finally treasure the immediate to minimize regrets down the line. This is an active guide for our adult children in their expressing love and care for their dad.”

becomes the driver and that is almost always now. I’ll end with a humorous story. One early evening, I decided to walk over to our Fred Meyer’s store, about a mile from our house on a very familiar road. Rosella and I went over the details as we always do as to how I would get there and home again. Well, I did it all right except that I came out the store’s east entrance instead of the south entrance. So I found myself walking on a street I knew was not the right one. No lights appeared any place until I spotted a fire station. I couldn’t find the door so I knocked on the window and was directed to the door. I explained that I needed to find my way back home and asked for directions. Also, I asked if I could call my wife first. She was very relieved and had assumed that I could not find my way home again. Much to my surprise and hers, I was escorted home in not the fire chief’s sedan, but a real fire engine! After being seated in the back with my two escorts in the front, I told them I had Alzheimer’s. Rosella thinks they guessed earlier. Maybe so. They were kind and gracious. It’s good to have community service people out there clued in to people like myself! We both thanked God for the protection.

I do have challenges in day-to-day life. My short-term memory loss continues to expand and recently it has taken on a new form: the loss of common nouns. Sometimes I can come up with a substitute word or similar meaning; sometimes not. Also the loss of freedom to drive is one of the harder facts of Alzheimer’s life. I feel that my hands-on driving skills are as good as ever, but not my memory of how to get from here to there. I have made the decision that Rosella’s feelings are the ﬁnal word. If she is not relaxed with my driving, she

MAILBOX We are always heartened to hear from readers who make good use of Perspectives. The Alzheimer’s Services

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of Cape Cod and the Islands writes, “We use the newsletter in our early-stage support groups and ﬁnd it to be one of the most useful, helpful publications. Thank you for all that you do!”

balloon. My Alzheimer’s progression has been unusually slow. I do not have the outward characteristics usually associated with Alzheimer’s. I credit that to: ● I was never in denial that I had a problem ● As soon as I realized that my brain was not working normally, I immediately sought diagnosis and help. ● Aricept was prescribed (more recently changed to Exelon – first 1.5mg, then 3mg and now 4.5). These prescription drugs neither stop nor reverse the symptoms. They do, however, significantly impede its progress. ● I have studiously followed my psychiatrist’s recommendations including no alcohol, no caffeine, and I play computer games/puzzles to keep my brain active at problem-solving. ● Though for 2 or 3 years, my wife wanted to deny that my problem was Alzheimer’s, more recently she has accepted it and goes out of her way to be understanding and helpful. ● As word spread at our church, (First Presbyterian), people have been understanding. ● Though age is catching up with me and I am a bit more feeble, I stick to familiar paths and streets when walking and driving.

We are also glad to receive feedback on issues that should be covered in the newsletter. One reader from Fullerton, California writes, “Please report on the most promising research for Alzheimer’s – perhaps a table summarizing Stages 1, 2, and 3 drugs under evaluation by the FDA (Food and Drug Administration).” This request prompted an abbreviated updated investigation of clinical trials reported in this issue on pages 6-7 along with resources for further information. . Also included in the mailbox is the following letter from David McGown. Mr. McGown has Alzheimer’s and prepared this statement for a press conference that was held at the New Mexico State Legislature. We are grateful to Mr. McGown for sharing his statement with readers. “As my wife and I talked about my memory problems, she took me to see a neurologist who diagnosed my Alzheimer’s on June 23, 1998. Since soon thereafter, I have been under the care of a psychiatrist who specializes in the treatment of Alzheimer’s patients and their families. The legislature needs to be aware that as age expectancy rises, the need for Alzheimer’s services will

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At times I am depressed (though I try to hide it) and have a sense that I am moving toward the end of the road. Then I try to snap out of it and keep plugging along. I am much more comfortable at home and in familiar situations. I do get confused and mixed up at times. I mislay, misﬁle, and forget to save on my computer and then forget how or where I ﬁled it. What frustrates me the most is the loss of my memory. Very often I start to do something, get distracted, and then I forget what it was that I was trying to do.

claim to stimulate thinking abilities, help prevent Alzheimer’s, or boost brain power. These claims are a big draw to many people who either have Alzheimer’s or are concerned about getting it. But what do we really know about brain boosters and their abilities to power the brain or prevent dementia? While there are studies to suggest that some supplements may be beneﬁcial to brain health, there is an important distinction between suggestion and evidence, and consumers need to be informed.

I encourage my wife to go on with her life as much as possible the way she would if I did not have this problem.”

Vitamins, Minerals, and Antioxidants There is encouraging research suggesting the beneﬁts of dietary antioxidants. Antioxidants eliminate “free radicals” from the body. Free radicals are products that are released from normal cells but can cause damage to the cell, or accumulate in the plaques that form in the brains of persons with Alzheimer’s. Antioxidants sweep up free radicals and help the body to eliminate them. The most common dietary antioxidants are Vitamins E and C. Based on research that found a beneﬁt of Vitamin E for persons with advanced Alzheimer’s, it is commonly recommended that persons at any stage of the disease take up to 2000 IUs of Vitamin E a day. A high dose of Vitamin E acts as a blood thinner, so it is important to check with your doctor before starting Vitamin E supplements. Although Vitamin C has not been studied as formally as Vitamin E, a few

David J. McGown Santa Fe, New Mexico

Nutritional Brain Boosters Separating Fact from Fiction

The last decade has seen a surge in products that are marketed to the public as “brain boosters” or “neutraceuticals.” These supplements, vitamins, or teas

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studies suggest that Vitamin C might reduce one’s risk of developing Alzheimer’s. Blood levels of Vitamin C have been found to be lower in some persons with Alzheimer’s. Since excess Vitamin C is excreted in the urine, there is little risk to taking a Vitamin C supplement.

currently prescribed for Alzheimer’s including Aricept, Exelon, and Reminyl. Huperzine A is currently being investigated in formal clinical trials across the United States to determine its safety and beneﬁt for persons with Alzheimer’s. Any personal use of Huperzine A should be monitored by your physician as taking this substance alone or in combination with other Alzheimer’s medicines could produce harmful side eﬀects.

Vitamins B12, B6, and Folate (Folic Acid) have received more attention recently. Vitamin B12 and folate levels can be low in some persons with Alzheimer’s and this may have some influence on the disease. A large clinical trial to evaluate the benefit of B12, B6 and Folate supplements for persons with Alzheimer’s is now underway (see page 6). Results from this study will help to determine whether vitamin supplements could be beneficial to persons with Alzheimer’s. Excess B vitamins are also excreted in urine so supplements are relatively safe. Some health food stores recommend minerals such as zinc and selenium for brain health. Conflicting research suggests that zinc could be either beneficial or harmful for Alzheimer’s, and studies of selenium have not found a clear benefit to this supplement.

Ginkgo Biloba Ginkgo Biloba is the most studied of the “brain boosters” and is widely available in groceries, pharmacies, and health food stores. While some studies have found that persons with dementia improve with use of Gingko Biloba, the improvement generally has not been as significant as that seen with the drugs currently on the market for Alzheimer’s. It has also been difficult to determine a specific beneficial dose of Gingko. Like all nutritional supplements, Gingko is not regulated by the Food and Drug Administration (FDA) so the purity or potency of the extract may vary between manufacturing brands. Although the herb has few of the unpleasant side effects of other Alzheimer drugs, Ginkgo Biloba is a blood thinner so it is advisable to consult with your physician before taking this supplement.

Huperzine A Huperzine A is often marketed in health food stores as a memory booster. It is derived from a Chinese moss. Researchers have found that this moss extract has the same beneﬁcial properties as some of the drugs

CoenzymeQ10 CoenzymeQ10 is an antioxidant that is sometimes marketed as beneﬁcial to the

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brain. There is no evidence of its effectiveness in treating or preventing Alzheimer’s disease. A synthetic version of CoenzymeQ10 called Idebenone was tested in clinical trials with persons with Alzheimer’s, but the trials were stopped due to lack of benefit. A recent study did suggest possible benefit of CoenzymeQ10 for people with Parkinson’s disease. Fish Oils and DHA (not to be confused with DHEA) Several studies have found that people who regularly eat fatty fish such as tuna or salmon may have a lower risk of developing Alzheimer’s. Certain fatty acids, such as DHA, may play a role in healthy brain membrane function. No clinical trials of these supplements have yet been carried out for Alzheimer’s, but in the meantime, it couldn’t hurt to add some tuna and salmon to your diet. Many people assume that if something is “natural”, it can’t be harmful. While some neutraceuticals may show promise for persons with Alzheimer’s, others may be harmful or expensive supplements of little worth. The web sites and phone numbers listed on page 7 may be helpful to you if you have further questions about these supplements.

In the News A German study published recently in the Proceedings of the National Academy of Sciences suggests that persons who take memory-boosting supplements at bedtime may not be helping out their memory as much as those who take them in the daytime. Many drugs prescribed for Alzheimer’s (including Aricept, Exelon, and Reminyl) help by increasing a chemical in the brain called acetylcholine. In a small, but interesting study conducted by Dr, Steffen Gais of the University of Lubeck in Germany, findings suggest that in order for the brain to maximize memory ability, it may need to have the temporary reduction in acetylcholine that normally occurs during sleep. Taking memory supplements or medicines at bedtime may interrupt this normal resting process in the brain. Although his study was conducted in young men without Alzheimer’s, and needs to be replicated in much larger numbers with persons with dementia, some researchers are considering whether it might be more beneficial, when possible, for persons with Alzheimer’s to take memory supplements and medicines in the morning and/or afternoon instead of at bedtime.

Grateful acknowledgement to Michael lGrundman, MD and Douglas Galasko, MD for the information in this article

Research Updates In the US, in order for any prescription medicine to make it to the market, the Food and Drug Administration (FDA)

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requires a thorough series of tests or “clinical trials.” These clinical trials are generally conducted in three phases. Phase I trials enroll small numbers of healthy volunteers to test the safety and tolerability of the medication. If the drug passes acceptable safety standards, it moves into Phase II and then larger Phase III trials to test its effectiveness. In these phases, the drug is compared against a placebo in groups of persons affected with the disease the drug is intended to target. When these extensive clinical trials are completed, if the drug has been shown to be safe and effective, the drug manufacturer applies to the FDA for approval to market the drug.

countries before being approved by the FDA. Clinical drug trials continue to be a very active area of Alzheimer’s research in many countries around the world. Some trials are conducted internationally across sites in different countries. I regret that for this brief article, I do not have details on clinical trials happening in countries outside the US. For international readers, check with your National Alzheimer’s Association or Society. This article highlights a few of the exciting trials currently underway in the US that are likely happening in other countries, too. These studies were selected because they are currently enrolling and are happening at many different sites across the country. There are hundreds of smaller studies being conducted in local regions across the United States. If you are interested in finding out more about clinical trials, contact your local chapter of the Alzheimer’s Association to determine the site closest to you. Or check their web site listed at the end of this article.

The process of initial investigation, conducting the trial, data collection, and possible approval can take many years. Once approved and on the market, a drug may still be used in a Phase 3 or 4 clinical trial to study diﬀerent doses or uses of the medicine. Some of the studies listed below are using already FDA approved medicines, so if they prove to be eﬀective for Alzheimer’s disease, they will probably not have to undergo the same lengthy approval process before they are recommended or prescribed for Alzheimer’s.

The CLASP study (Phase III) Research in animals and humans has found that lowering cholesterol levels with statins (cholesterol-lowering drugs) seems to help brain function and reduces the risk of Alzheimer’s. The CLASP study is testing whether a statin called simavastatin can slow the progression of Alzheimer’s in people with mild-to-moderate stage disease. The study is recruiting 400 participants

All of the currently approved medicines for Alzheimer’s disease including Aricept, Exelon, Reminyl, and Memantine, went through rigorous clinical trials both in the US and in other

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from approximately 40 sites across the United States.

For More Information on Clinical Trials National Alzheimer’s Association http://www.alz.org/Resources/TopicIn dex/ClinicalTrials.asp or 1-800-272-3900 The National Alzheimer’s Association has a “Clinical Trials” section of their web site and also provides current clinical trial fact sheets available online or by mail.

The VITAL study (Phase III) Persons with Alzheimer’s often have higher blood levels of an amino acid called homocysteine. Homocysteine levels can be reduced with high dose supplements of folate (folic acid) and vitamins B6 and B12. The VITAL study is testing whether reducing homocysteine levels with high-dose folate/B6/B12 supplementation will slow the rate of decline in persons with AD. The study is enrolling 400 persons with Alzheimer’s from over 30 sites across the United States.

ClinicalTrials.gov http://www.clinicaltrials.gov A service of the National Institute on Health, this site provides information on current federally and privately supported clinical trials.

Valproate Therapy (VALID) (Phase III) Some persons with Alzheimer’s develop considerable agitation or symptoms of psychosis such as delusions (a ﬁrm but false belief). The purpose of this trial is to test whether valproate therapy can delay or prevent agitation and/or psychosis in persons with Alzheimer’s disease. The study also hopes to determine whether valproate therapy can delay progression of the disease. There will be a total of 300 participants in this trial at about 30 sites across the United States.

Alzheimer’s Research Forum http://www.alzforum.org This very informative site covers all aspects of up-to-date international Alzheimer’s research and science. Alzheimer’s Disease Education and Referral (ADEAR) http://www.alzheimers.org ADEAR is a service of the National Institute on Aging. They maintain an online clinical trials database and are available by phone.

All clinical trials have very strict inclusion and exclusion criteria. If you do not get into one trial though, ask to be kept on a list to be informed of other trials that are bound to develop in the future.

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An Early-Stage Dinner Dance

discount room rate at the hotel and 8 couples made a weekend of it. That added another dimension with many of them having breakfast together the following morning. The feedback during and after the event was very positive. The chapter staﬀ planned to do the dance annually, but have had many requests to repeat it much sooner!

The Alzheimer’s Association Massachusetts Chapter recently held their first-ever dinner dance for people with early-stage Alzheimer’s and their partners. Twenty-five couples attended as well as a few singles and chapter staff. It was a magical evening of warmth, smiles, laughter, camaraderie and spirit. The food was excellent and the dance floor was always full. The space (a hotel), dinner, and DJ were all donated which reduced the costs of the event to $10 per person or $15 per couple. The evening was a perfect example of life beyond Alzheimer's. One staff member put it well at the end of the evening: “For four hours tonight, there was no Alzheimer's in that room." One woman said that it was the first time she and her husband had danced in 40 years and she couldn't keep him off the dance floor! Another said that her husband had not smiled in three months and he smiled all night. Couples who didn't know one another carpooled and built friendships. The chapter also had a

Volume 9, Number 4: May-July, 2004 Understanding the Symptoms of Alzheimer’s With the diagnosis of Alzheimer’s disease or a related disorder, you will likely experience symptoms that can be puzzling and will require some adjustment. You may wonder if others share these symptoms or whether these changes are typical of the disease. It may be diﬃcult to describe your experiences to others or to your doctor, and sometimes medical professionals have unfamiliar names for these symptoms. This article provides a brief overview of some symptoms you may experience and gives their commonly used medical terms so that you can better understand them and communicate about them to others. Memory Loss (Amnesia) Memory loss is the primary symptom of Alzheimer’s disease and is sometimes

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referred to as amnesia. Persons with Alzheimer’s typically remember things from the more distant past, but are forgetful about recent events. There are a number of ways that these changes in memory can affect your daily functioning. For example, many persons describe the frustration of misplacing things. One woman says, “One of the problems with having such a bad memory is the unbelievable waste of time spent looking for things or having to retrace my steps altogether.” Other symptoms of memory loss can include difficulty keeping track of dates or appointments, forgetting the answers to questions you just asked, or losing recall for peoples’ names. Memory loss can be unpredictable though and this can be confusing for both you and your loved ones. Sheila writes, “I can’t even say, ‘Well I remember these kinds of things, but I have a hard time remembering those kinds of things.’ There’s no neat pattern. Today I may be fine and then tomorrow, not so fine.”

task. This problem is often called apraxia and it can result in frustrating experiences. For example, you may get out the sewing machine to hem some pants, but not be able to figure out how to proceed. Or you may go to mow the lawn, but find that the lawnmower is now more confusing to operate. Bill describes another example of apraxia: “I can hardly type anymore. I used to do all of my typing throughout my career. Now I'm just typing at a speed of one-two, one-two…” Suggestions: Break tasks down into small steps and just focus on one step at a time. Let someone help you to get started as this may prompt your ability to move forward with the next steps. Give yourself extra time to accomplish a task. Alexia and Agraphia Many people with Alzheimer’s or a related disorder have problems with both reading (called alexia) and writing (known as agraphia). Members of an early-stage support group in San Diego, California, recently described their experiences with these symptoms and discussed their valuable and inventive coping strategies. About reading, one man says, “One problem is if I’m reading a line and I get to the next line. I can’t track the lines. Reading isn’t easy anymore. It’s physically difficult.” And about writing, another man comments, “I was an engineer and had exquisite handwriting, but now I find when I

Suggestions: Establish routine ways to stay organized. Keep one main calendar or date book. Find a consistent place to keep important objects such as your glasses and house keys. Try rehearsing friends’ names or reviewing photos of them before to you go to visit them. Apraxia At times, you may have diﬃculty carrying out the steps involved in completing a previously well-known

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write, it’s terrible penmanship so I use a computer and boost up the font. I’ll compose there. Thank God for spell check! I fought it for awhile, but it’s something you’ve got to accept.”

Suggestions: Consider joining a support group for persons with Alzheimer’s or a related disorder. You may find it easier to communicate with others who share and understand these symptoms. Also, some people find that one on one communication or talking and tracking conversation in smaller groups is easier than being at larger social gatherings. If you can’t find the right word, try to use another one or ask someone to try to prompt your memory. If you are open with others about your diagnosis, others are more likely to understand the problem and you may be less stressed when communicating.

Suggestions: Books on tape (through your local library) can be a valuable resource if reading becomes difficult. Others find that large print books are easier to read. If remembering what you have read is a problem, one woman gives this advice, “I read a lot, but I decided to read just 12-15 pages at a time and then I think about it during the day and that helps me remember it.” If you do not use a computer for writing, one woman has advice about correspondence, “My handwriting gets smaller and smaller as I write, so that I have to start my note all over again. I have really nice feelings and I want to tell them. So my friend has offered to write my letters over for me or write while I dictate.”

Visual Agnosia or Perceptual Problems Persons experiencing visual agnosia have good visual acuity (they can see things in clear focus), but lose the ability to actually identify what they see. Interviewed in Snyder’s book “Speaking Our Minds”, Bea candidly describes this symptom: “Some- times what I’m looking for will be lying right in front of me and I won’t see it. I don’t always misplace things; they’re right there, but I just don’t recognize them. That’s a real problem. Money is getting to be terrible. I just don’t want to handle money anymore because I can’t identify it.”

Aphasia and Anomia Aphasia describes a common difficulty understanding conversations, or expressing yourself. Anomia refers specifically to difficulty finding the word you want to say. Some people report that words or sentences just seem to “come out the wrong way.” You may forget one word and then lose your train of thought or not be able to come up with the rest of the sentence.

Others describe changes in their ability to judge distance and depth. For example it may be diﬃcult to judge the height of stairs or sidewalk curbs. These diﬃculties are known as perceptual

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problems. Cary Henderson describes this problem in his book of journal entries, entitled “Partial View”: “I get nervous on anything that’s higher than a few inches…It does get kind of serious. It’s also maybe silly because even if you’re not about to fall down or something, you think you are. You feel that you are.”

Independence: How to Assist a Person with Memory Loss By Helen Nowacki Editor’s note: We are grateful to Helen Nowacki and to Karen Vetor of “CoﬀeeHouse” (see page 7) for permission to print Helen’s advice in this issue of Perspectives.

Suggestions: Family members and friends need to understand that visual agnosia is common with Alzheimer’s and related disorders. Knowledge of the symptom can help to lessen confusion or frustration about any difficulty you may have finding objects or even figuring out what they are sometimes. For any perceptual problems, consider using a cane or walking stick to help with judging heights and distances. If you are driving, be tested for driving safety. Perceptual problems can seriously affect driving performance.

Let me try to do things by myself or ask if you can assist me before stepping in to help. I will let you know when I need assistance.

Although we can’t eliminate the symptoms discussed in this article, many people discover ways to eﬀectively cope with and manage them. It can be helpful to talk to others who share these same experiences. It is common to hear persons with Alzheimer’s discuss the importance of being patient with yourself and maintaining a good sense of humor. These may be the most valuable suggestions of all!

I need freedom to do things, to be involved even if I might make a mistake. Sometimes it is better to have tried and made a mistake, rather than not to have tried at all. Mistakes can be reframed as challenges. My accomplishments give me conﬁdence and allow me to feel independent.

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of their immune system following treatment with the vaccine. The study was stopped midway due to this dangerous side effect. However, through various means, researchers were able to determine that the vaccine was working effectively to lower the amount of brain plaques in some of the study participants. These very encouraging findings have been an incentive for pharmaceutical companies to improve the vaccine so it does not cause an inflammatory response. USA based Elan and Wyeth pharmaceutical companies have collaborated to create a vaccine that they believe will be better tolerated. A Phase 1 safety trial for this hopeful vaccine is now underway.

When I accomplish something, there is aﬃrmation that I can still do things. Let me set the pace when we do things. I know you can sometimes complete a task a little faster, or you simply want to help by doing things for me, but then I am left out. It takes a little longer to physically do things when I have memory loss. Other people around me need to slow their pace when doing things. It is easier to do things together as a team.

Memantine for early-stage Memantine (marketed as Namenda) is the newest available Alzheimer’s medicine and has been approved for persons with advanced Alzheimer’s. Last year we reported the findings that for persons with mild-moderate AD, Memantine taken in combination with Aricept, did not show any more benefit than Aricept alone. As such, persons with mild AD who were already on Aricept were not encouraged to add Memantine to their medications. However, in newly reported findings from the most recent study of Memantine, researchers determined that Memantine, when taken alone, does have beneficial outcomes for persons with mild-moderate Alzheimer’s. The benefits are similar to Aricept, Exelon,

It is easier for me to focus on one task at a time. It helps to break activities down into steps.

Research Updates Vaccine Update Attempts are again underway to find an effective vaccine for Alzheimer’s. A previous international study vaccinated study participants with a fragment of the amyloid protein found in the damaging brain plaques of persons with Alzheimer’s. During the study, however, a small percentage of participants developed a brain inflammation from an over stimulation

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and Reminyl. For those persons who do not tolerate these medications due to the side eﬀects, you may want to talk with you doctor about Memantine. Memantine is not yet approved by the Food and Drug Administration (FDA) for use in mild-Alzheimer’s but Forest Laboratories (the makers of the drug) plan to submit for FDA approval for early-stage use later this year.

safety of the surgery considerably and believe that the positive outcomes for most of the participants in the study warrant another trial. The study has moved to Rush University Medical Center in Chicago where more participants will be enrolled. The advancement of Alzheimer’s research owes a great deal to the generous and courageous individuals who participated in this initial study. Their contributions are the foundation for this next phase of hopeful treatment.

Gene Therapy Results Dr. Mark Tuszynski at the University of California, San Diego, recently reported findings from his gene therapy trial. The study enrolled eight persons with mild Alzheimer’s who consented to have genetically modified cells surgically implanted into their brains. The cells produced a substance called nerve growth factor (NGF) that aimed to prevent cell death and stimulate new cell growth. Alzheimer’s causes brain cells to die and the surgery targeted areas of the brain that are most affected by the disease.

Award Winners in the News The Potamkin Prize, considered the Nobel Prize for research in Alzheimer’s disease and related disorders, was recently awarded to Leon Thal, MD, of the University of California, San Diego and Roger Nitsch, MD, of Zurich University in Switzerland. Dr. Thal directs the Alzheimer’s Disease Research Center at the University of California, San Diego. He also leads the Alzheimer’s Disease Cooperative Study, a national network of 80 centers working together to conduct clinical trials of potential treatments for Alzheimer’s. Dr. Nitsch is a professor at Zurich’s Neuroscience Center. He has made numerous contributions to the science of Alzheimer’s, including the area of genetics and biological markers for the disease. The work of these two men and so many others around the world give us ongoing hope in the international collaboration and progress towards eﬀective prevention, treatment,

Six participants successfully completed the surgery and in the past1-2 years, have since shown a 50% reduction in their rate of mental decline on a measure of mental functioning. Although this is exciting, two study participants suﬀered bleeding in the brain as a result of the surgery and one of these individuals had a fatal heart attack ﬁve weeks after the procedure. These were tragic outcomes of the study, but the researchers have improved the

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and an ultimate cure for Alzheimer’s disease and the related disorders. Darby Morhardt, MSW, research assistant professor in the Cognitive Neurology and Alzheimer’s Disease Center at Northwestern University in Chicago, received the 2004 Mind/Alert Award from the American Society on Aging. She received the award for spearheading the Buddy Program, which provides opportunities for medical students to build relationships with persons who have Alzheimer’s disease or other related disorders. Students spend a minimum of four hours a month with their “buddy” to build a friendship and enjoy mutually interesting activities together. This excellent program helps upcoming doctors to become more sensitive to the experiences of persons with dementia and to providing more sensitive medical care.

better plan for your trip. Consider the following tips: Pack lightly. Too many items and bags create more opportunities to lose things. Simplify your travel itinerary. Staying in a different place each night can be disorienting and tiring. Focus on one or two countries rather than doing a whirlwind tour of the continent. Bring a nightlight with you to place in the bathroom of your hotel. Drink plenty of fluids. Travel can be dehydrating resulting in worsened memory and concentration problems. Wear a medical identification bracelet. Call your local chapter of the Alzheimer’s Association and ask about the "Safe Return" identification program. Ask your doctor about a mild sleeping medicine to be used if needed. Disrupted sleep and jet lag can increase confusion and disorientation. Try the medicine once before traveling to make sure you don’t have unwanted side effects. Take photos! Reviewing them upon your return helps to prompt memories.

Questions and Answers Q. Is it alright for me to continue traveling? We are planning a family vacation to Europe this summer and wonder if you have any advice.

A Life Beyond Diagnosis By Bernie and Barbara Shapiro Editor’s note: We are grateful to Bernie and Barbara Shapiro and the Massachusetts Chapter of the Alzheimer’s Association for permission to reprint this revised version of their article from the Chapter’s Fall, 2003 newsletter.

A. Many people with Alzheimer’s continue to enjoy travel. For some, memory loss can increase the risk of becoming disoriented or overwhelmed when in a new place so you may want to take an overnight trip to a local destination ﬁrst to see how you adjust. This will give you some idea of any travel problems that arise so you can

Sometime around 1995, I noticed that some of my words were hard to

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remember or pronounce. I assumed it was old age, as I was then 67. After several years, the situation did not improve; in fact the problems were getting worse. I then felt that whatever was happening to me was not just old age, but was something more serious and I needed to know what it was. In July, 2002, Barbara and I decided to consult my doctor to see what was causing these changes. All the usual tests were done. The unanticipated and dreaded result, probable Alzheimer’s disease (AD).

how people lived with it, both the person and the care partner. My family has always had a supportive relationship. Our family is small, a son, daughter-in-law, and several siblings, but we all live nearby and have always helped each other. We know that we’ll rely on them for support.

I was devastated, in shock, speechless. I could not believe that I could have AD. I am in excellent health, and truly believed that I would have a long and healthy life. I was angry, depressed, felt suicidal, and hated the world. After experiencing this myriad of emotions, I calmed down and realized that there is still a world out there for me to participate in.

Breakthrough One day we found a ﬂier in our local newspaper announcing a seminar at Whitney Place, an assisted living facility with an Alzheimer’s unit near our home. We attended and received a lot of valuable information. We both began attending support groups for early-stage persons and their care partners. We both have gotten so much from the groups in terms of meeting others, learning about new treatments, and discussing problems and coping strategies. For both of us, it is important to be with others in similar circumstances.

Taking Stock On the way home, as the numbness was wearing off, we stopped at a favorite ice cream stand. What do we do now? What happens to our lives? Is there life after the diagnosis? How much, and what quality? What do other people do? Are there other people and how do we find them? I went on a reading binge: magazines, newspapers and pamphlets, anything I could find. Barbara attacked the libraries looking for books dealing with the disease and

Courage to act After the initial shock of the diagnosis, and the realization that our lives would be changing in ways we had not anticipated, we took stock of our lives. We would learn as much as we could and seek ways to gain quality time and life. We explored options for treatment and became very interested in research programs. Barbara and I realize that medicine and science are the direct result of new ideas and approaches developed through research. It is

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important to realize that without knowledge, we stumble into darkness. I am participating in a number of research programs. Hopefully they will be of some help to me, but if not, I am conﬁdent that they will beneﬁt others in the years to come. Participating in research gives me hope and assurance that I am doing all that I can do.

Living fully

To further our education, we took a four-part course given by Elaine Silverio, Early-Stage Programs Coordinator for the Alzheimer’s Association. We had discussion on the latest new drugs, new available organizational gadgets, ways to exercise the brain and body, and received much more useful information. Simplifying. This Spring, Barbara and I moved to an “active adult condo community” to make life a little easier. This will eliminate the constant home repairs and caring for the yard and garden. It was a diﬃcult decision to make as we had been in our home for 20 years. Now that we have moved and are adjusting to our new surroundings, we feel that this was an excellent decision. It is important to make things easier in your life. We have taken several trips both in and outside the US and are looking forward to more in the coming months. I took a series of religious classes and found the reading and participation in the program to be both challenging and rewarding – especially to realize that I could do it.

What impact has AD had on our lives? We have become closer as a couple, each of us realizing that the years we thought we had to enjoy life, love, travel, and our retirement years together have been compressed. We are trying to maintain a positive and optimistic view of life. “Be positive” has become our mantra. We realize that we must do the important things now while we can still enjoy them. We need to remember to tell family and friends how important they are in our lives and spend quality time with them. We need to take trips we have been putting off. We need to learn as much about the disease, and the new drugs and methods of buying time as we can, and continue to participate in the support groups we both find to be so valuable. We need to advocate and help others understand that there is life and love and a future after being diagnosed with AD. Difficult times will eventually come, but while we are still able, we have to keep on with the enjoyment of each other and our lives. And we will!

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The Coﬀee House: An Early Memory Loss Support Group

CoffeeHouse members are interested in teaching as well as learning. They have developed a series of tips sheets including “Communication Tips”, “Ways to Remember”, and “The Personal Experience of Living with Memory Loss.” The tips sheets provide insight into the experience of living with memory loss, communication issues, and trouble-shooting difficult situations. (See Helen Nowacki’s personal tip sheet on page 3). Group members have also spoken at local Alzheimer’s education conferences and been interviewed for public television. Their support, education, and advocacy efforts have made a significant impact in their community.

Coﬀee House is an early memory loss support group for persons with mild Alzheimer’s or a related dementia that is oﬀered through the University of Michigan Geriatrics Center in Ann Arbor. Participants meet once a week to talk about the experiences and feelings of living with memory loss. Common topics include communication challenges, changes in relationships, concerns about driving, accepting help from others, and ways to learn more about resources, research, and treatment. Speakers occasionally present to the group from the Great Lakes Chapter of the Alzheimer’s Association and the University of Michigan’s Neurology Clinic.

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VOLUME 10

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Volume 10, Number 1: August-October, 2004 Creating and Maintaining Social Relationships The Gentleman’s Club by Marianne Troy, MS A Social Group for Men with Alzheimer’s Personal Perspectives on Living Well with Losses by Thad Raushi, Ph.D. Conference Announcement Volume 10, Number 2: November-January, 2005 My Champion or My Hero by Richard Taylor Connecting Persons with Early-Onset Dementia Report on Innovative Conferences for Persons with Early-Stage Dementia by Lynn Jackson Volume 10, Number 3: February-April, 2005 Mental and Physical Fitness: Exploring ways to stay mentally and physically active New Resource: “Thinking Cards” Six Dimensions of Wellness

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Mind Boosters: An Early-Stage Memory Loss Program by Kristen Einberger Volume 10, Number 4: May-July, 2005 Traveling and Vacationing Helpful New Resources For Physical Well-Being The Scottish Dementia Working Group

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Alzheimer’s – that others will treat them diﬀerently if they learn about the diagnosis. One man discusses his mixed feelings about the issue and says, "I don't care who knows or doesn't know. I don't try to hide it. Well, yes I do. I do try to hide it. You make a mistake or something and you try to hide it. I think it's natural. You don't want to appear to be less than you want to be. You want to appear as strong as you could be.” This feeling of wanting to maintain self-image is very common and it is not unusual to try to hold oﬀ telling others about a diagnosis until symptoms become more apparent. At that point, telling others may feel like a very reasonable thing to do. One man states, “Why shouldn't I tell people about Alzheimer's? Why hide it? Otherwise they'll think, 'What is he doing?' I didn't tell people in the beginning. It wasn't until the Alzheimer's became more prevalent -- when I couldn't do things that I had done previously.”

Volume 10, Number 1: August-October, 2004

Creating and Maintaining Social Relationships For most people, relationships with friends and a social community are an important and meaningful part of daily life. Although a diagnosis of Alzheimer’s or a related disorder does not change the importance of these relationships, symptoms of the disease, or your concerns about how others will respond to you, may have some impact on how you relate with others. Telling others about the diagnosis Many people feel uncertain about disclosing their diagnosis to others. It may take some time to come to terms with the information yourself before you are comfortable telling your friends. Some people report feeling concerned about stigma associated with

As the public becomes more and more aware of and educated about Alzheimer’s disease, many people are feeling less concerned about stigma or responses from others and do not hesitate in telling people about their

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diagnosis. A growing number of people with Alzheimer’s or a related disorder are presenting on panels at conferences or fundraisers. Others are writing articles, essays, or books for publication. Some are getting involved in advocacy and testifying to state or federal legislators about the social and political signiﬁcance of the disease. Others use day-to-day opportunities to increase public sensitivity, understanding, and awareness. One woman diagnosed in her early 50’s is a powerful example: "I tell everybody! It's nothing to be ashamed of. People need to know that we're just like them. The other day, I was in Nordstrom's and I was in line to buy my dress. The cashier was making mistakes and joking, 'Oh no, I must have Alzheimer's!' When I got up to the register, I looked at her and I said, 'I do have Alzheimer's.' I think she was pretty embarrassed that she had joked about it."

before this happened to me. I don't expect more than to really have an opportunity to say what is going on and to express how I feel about it." Some people with Alzheimer’s feel self conscious about some of the symptoms of the disease and may be reluctant to talk with others about the problem. You may struggle to find a word or find that you lose your train of thought mid-stream. Changes in language and communication abilities may mean that conversations take a bit more effort sometimes. This can lead to a risk of social isolation and researchers caution that this can make symptoms worse. It is important to try to interact with others in whatever way feels most comfortable to you. Creating connections with others Although some people with Alzheimer’s feel that they have enough activity and social interaction, others discuss the importance of trying to stay active and value specialized social programs designed for persons with memory loss. An energetic man diagnosed in his mid-50’s notes that persons with Alzheimer’s risk isolation due to limited choices for activity: “The worse thing in Alzheimer's is that people don't get out. And there has to be better things to get them out. I don't want to vegetate.”

Responses from others You can't always predict how others will respond if you tell them about your diagnosis and sometimes you just take a chance. Newly diagnosed with Alzheimer’s, Jean says, "I've told my friends about Alzheimer's disease. They are very quiet. They don't know what to say. I don't know what to say. I think they understand because I'm telling them why it is so hard and the impact that the disease has. They listen. I don't expect them to respond any more than I could have responded two years ago

Participating in social programs that might be in your community can help to reduce the risk of withdrawal and

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isolation. Call your local chapter of the Alzheimer’s Association or any other Alzheimer’s related organizations in your community to learn about programs that might be available to you. Support groups for persons with mild–moderate Alzheimer’s are becoming more common and usually combine a mixture of education, socialization, and peer discussion. One newly diagnosed woman who enjoys her support group states, “People may deny that they have Alzheimer's disease because they don't have the opportunity to talk with other people who are sympathetic and understanding, and who will help them along in the whole process. That's a sad state of aﬀairs. Anyone who has this diagnosis needs to have others with whom to talk.” The need for peer support and an outlet for feelings is shared by a participant of a group for younger persons with Alzheimer’s in Grampion, North East Scotland: “Having this illness is a lonely experience, even when you have a close family who gives you a lot of love. There is a part of me that they can’t reach or understand, but when I’m with my buddies, I don’t have that lonely feeling because they can understand me.”

The Gentleman’s Club A Social Group for Men with Alzheimer’s By Marianne Troy, MS Our Gentleman’s Club began on Valentine’s Day, 2003. It consists of 15-20 male participants between the ages of 55-88 who are in the early-to-middle stages of Alzheimer’s disease (AD) or a related disorder. The Club has two staff members and two volunteers. It meets weekly for three hours for lunch and a variety of activities. Although we also offer a “Ladies Club”, it is newer and much smaller as there seems to be more of a need for activity among the men with AD in our community. Our main objectives for the Gentleman’s Club are to allow for fellowship among male peers who are affected by AD and to provide physically and mentally stimulating activities. We hope to foster positive self-esteem, and to enhance quality of life for our participants. As one participant says, “The camaraderie is great! I get to forget I have Alzheimer’s and just enjoy the guys.” Each meeting includes lunch, discussion of current events, a speaker or form of entertainment, and finally, a mentally challenging crossword puzzle that everyone works on together. “The speakers are outstanding,” says one participant. “We are so fortunate to have these experts come on a weekly basis.”

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● You may want to obtain pamphlets from your local chapter of the Alzheimer’s Association to give to friends who want or need more information about the disease. ● Think of the activities you like to do. Are they solitary or do they involve others? Although some people are more social than others, do try to make sure that some of your daily activities include socialization with others. ● Explore social programs that might be available to you in your community. If there are no programs for persons in the earlier stages of Alzheimer’s , ask that one be started! You may ﬁnd that there are new friends to be made in this process.

We have secured a grant to cover program expenses. Our organization, the Alzheimer’s Support Network, is an independent, not-for-profit corporation specifically serving families in Collier County, Florida. If you would like to start a program like this in your community, we would be glad to share our experiences with you. Suggestions to Consider ● Make a list of the people that you think should be informed of your diagnosis. This may include family or close friends. ● Discuss with your care partner or loved ones any differences of opinion about who and when to tell. If there is significant conflict, try to understand each other’s perspective. How would each of you feel if you were in the other’s position? Is it a privacy issue, or a concern about how others will respond to Alzheimer’s? Would your decisions about telling others be different if the diagnosis were cancer or another illness? Try to find a compromise so that the needs of both you and your care partner are respected. ● Some people with Alzheimer’s or a related disorder write a letter to family members and friends to tell them about the diagnosis. This lifts the burden of having to repeat the news over and over again to each person.

Research Updates New Promising Clinical Trials The pharmaceutical company, Neurochem Inc., is now recruiting persons with Alzheimer’s for a study to test the eﬃcacy of a new medicine, Alzhemed. Alzhemed aims to prevent beta amyloid proteins from clumping together into the sticky plaques that form in the brains of person with Alzheimer’s. These plaques are thought to cause much of the memory loss and other symptoms experienced in the disease. Unlike the currently available medicines for Alzheimer’s that primarily aim to lesson symptoms, it is hoped that Alzhemed will actually limit the progression of the disease. This new study will enroll 950 persons with

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Alzheimer’s at 70 sites across the United States and Canada. A European study of the drug is scheduled for early 2005. Call Neurochem toll-free from the US or Canada at 1-877-680-4500 for more information about enrollment criteria and a possible study site near you. Due to the overwhelming interest in this study, you may need to leave a message and wait a day or two for a study representative to return your call. You can also get updates on the trial sites at http://www.clinicaltrials.gov. Type the word “Alzhemed” in the search box to read an overview of the study and see the list of site locations.

reported to the International Conference on Alzheimer’s Disease in Philadelphia this July, researchers found that people with MCI who took Aricept developed Alzheimer’s disease at a slower rate than those who did not take the medicine. Although Aricept did not help to prevent the eventual onset of the disease in these study participants, researchers are hopeful that they can continue to work towards ways of postponing the onset of symptoms. Namenda Information and Updates Forest Laboratories, the pharmaceutical company that makes Namenda (also known as Memantine), now has a toll-free number for persons interested in learning more about this medicine. Namenda is primarily marketed for people with moderate-to-late stage Alzheimer’s disease, but some doctors prescribe Namenda to persons with more mild symptoms. This information phone line is open from 7:00 am–7:00 pm (Central Time). You can ask questions about the medicine and you can also get on a mailing list to receive an information packet about the drug as well as periodic updates when new information comes out.

Mild Cognitive Impairment Mild Cognitive Impairment (MCI) is often, but not always, a transitional stage between normal aging and Alzheimer’s disease. Persons with MCI typically have abnormal problems with memory, but these problems have not yet begun to aﬀect other areas of thinking or their ability to function in activities of daily living such as managing ﬁnances, keeping track of appointments, or driving. Some people with MCI are now enrolled in Alzheimer’s Research Centers or attend Alzheimer’s support groups because they identify with some of the memory complaints of persons with AD and are at a higher risk of developing the disease. Researchers are very interested in developing treatments that may lessen the chance of MCI progressing to Alzheimer’s. In results of a study

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Q. I like to take walks alone in my neighborhood but my wife is afraid I’ll get lost. I’m irritated at the thought of giving up my walks. Do you have any advice?

Questions and Answers

A. For many persons with memory loss, walking is an enjoyable and calming activity. A few precautions may help you to continue to take your walks safely: Pick a walking route and stick to it. Try to keep consistent with both the course and the general amount of time that you are gone. This consistency will help you maintain memory and also ease your wife’s concerns. Walk the course a few times with your wife so she is familiar with your route. Make sure you lead the way, so you can show that you are not at risk of disorientation. Be honest if you do become confused or get lost. This may signal that it is wiser to start taking your walks with someone accompanying you.

Q. Why is my handwriting changing so much? Is this a part of Alzheimer’s? A. It is common for handwriting to change over the course of Alzheimer’s. Writing is a complex task involving multiple regions of the brain that can become affected by the disease. Some people report that their writing is getting smaller or harder to read. Others have hand tremors and find it hard to coordinate a pen. Those who are familiar with typing or with a computer keyboard, often find it easier to type (although usually much more slowly). Others find that they can dictate letters or notes to another person who does the writing for them. One woman states that she has a drawer full of cards with printed messages on them and she just picks the right card for the right occasion and signs her name. Try to simplify your written messages in notes to yourself or to others and this may lessen your frustration. A lot can be said with just a few words!

Consider carrying a cell phone in case of an emergency or in case your wife needs to contact you while you are on your walk. Some cell phones now come with voice recognition so that you can simply state the name of the person you want to call and the phone calls the number for you. This removes any need to remember phone numbers. Wear a “Safe Return “ bracelet available through your local Alzheimer’s Association chapter. This excellent national program has helped to identify and return to safety

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many persons with Alzheimer’s who have become lost or disoriented. Get to know the neighbors on your route and ask for directions or help if you become lost or disoriented. Have your home phone number taped to the back of your cell phone so someone can use it to call your home for you if needed. Or show your “Safe Return” bracelet to the person trying to assist you so he or she can call the toll-free Safe Return number and get help for you. In warmer climates, don’t walk in the heat of the day. Choose mornings for walking when possible.

circumstances, we can choose whether we meet life from fear and hatred or with compassion and understanding" (page 276). What powerful words! What an empowering thought! For me, as someone diagnosed with early-onset Alzheimer's, this perspective has become an important part of my way of thinking about life, about my vision for high quality living with a low quality disease. At the core of high quality living is the spiritual. I ﬁnd rich meaning in the words attributed to an ancient sage: "Guard you inner spirit more than any treasure, for it is the source of life." I think of "spiritual" as the way we experience our daily living and the "spirit" as that life within us that emerges in this experience. So the inner spirit is the "source of life" within me, that vital force guiding how I see quality living, how I understand the Alzheimer's, and how I mold attitudes.

Personal Perspectives on Living Well with Losses By Thad Raushi, Ph.D. Editor’s note: Dr. Raushi was diagnosed with Alzheimer’s at age 57. He is also being treated for cancer. He is the author of “A View from Within–Living with Early-Onset Alzheimer’s” available through the Northeastern New York Chapter of the Alzheimer’s Association (518-438-2217). We are grateful for his permission to reprint these segments of a talk he gave at conferences in New York and Colorado in 2002.

Acknowledging the circumstances of Alzheimer's and experiencing the accompanying feelings allows me to let go of what I don't want and to move on with living well. It's not always easy. Some days I start out in the shower full of energy thinking I can tackle the world, denying the Alzheimer's. Then, later on in a conversation which I can't handle, or instructions I can't follow, or a problem I can't think through, I am

In his book titled “A Path With Heart”, Jack Kornﬁeld writes: "We may or may not be able to change our outer circumstances, but with awareness we can always change our inner attitude, and this is enough to transform our life. Even in the worst external

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brought back to reality. Yet, I move on. What helps me to move on is realizing that to be stuck in negative feelings is a miserable place to live. And I just don't like feeling miserable. Living in the moment fully is to live not clinging to past realities or to future dreams, but living fully present in today.

feelings of shame might come to me (for example, when I can't remember, say, or do something that most anyone could say or do) I recognize the feelings as a valueless societal bias, and let the feelings go. To hold on to these feelings of shame can only destroy the spirit and destroy my life.

Mindfulness meditation has helped me learn the richness of the moment. I have grown close to the philosophy of always seeing myself as doing the best I can at any given time with what I have at that time. Instead of wasting energy comparing myself to the me of the past and instead of bemoaning what I could have been in the future, I focus on the now. I can't counsel or teach as I once could, but I can share my journey in talks and in writing.

About openness and sharing: Both in the giving and the receiving of support, everyone beneﬁts. Having early dementia does not preclude the person from giving support to others. And being open to receive help can be a gift to the other person who desires to care and share their love. I do draw a line, though, in the receiving. Imposed help and the funeral parlor attitude of "Oh I am so sorry for you", just does not have a place in my life.

About attitude: Adjusting my attitude is simply recognizing that while I may not be able to change the circumstances of my life, I do have the choice of how I will view these circumstances. While the cancer or brain tumor or Alzheimer's will not disappear, though there may be such things as miracles, my attitude toward the diseases is my choice. About shame: Being embarrassed or feeling shame for something one has chosen to do which is appropriately shameful, is understandable. But to be ashamed of having Alzheimer's or cancer or ashamed of things I might say or do which are caused by the diseases, is no reason to feel shame. When such

About relationships: At the heart of all of my relationships is the love and caring Sylvia and I share together. Sylvia is precious to me, a treasure in my life. There is also the love and caring of our grown children David and Deborah, our daughter-in-law Diana, and precious grandson Derek. There is a long-distance brother who calls to check on me often and have some laughs. There is a long-time colleague and friend with whom I have lunch weekly. There are friendships, old and new. Family and friends are important, as is the nurturing of these relationships. Some people feel friends fall away with a dementia diagnosis. No doubt

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sometimes this happens. But I know for myself and from several others with the disease, that friends remain friends and continue to share hobbies and play tennis and volunteer together. It can happen.

some new thought, some new dimension in quality living, no matter how large or how small that experience may be.

Conference Announcement A Changing Melody – A Learning and Sharing Forum for Persons with Dementia and Their Care Partners

About life outside Alzheimer's: I work at maintaining a life outside the disease. It is important to have hobbies and interests and activities. For me this includes volunteering, writing, enjoying family, gardening, genealogy, and other things.

An innovative conference designed especially for persons with Alzheimer’s or a related dementia is scheduled for November 6, 2004 in Toronto, Ontario, Canada. Workshops are directed to and in some cases, led by, diagnosed individuals. Topics include living with dementia, adapting and enhancing leisure activities, advocacy and dementia, and planning ahead.

Then there is adapting: Knowing I can't change the Alzheimer's, yet believing that I still have choices over how I see the diseases in my life, I am able to work at making adaptations on how I will live. To me this is rehabilitation. Some examples of adaptations are: learning to concentrate on one activity or thought at a time; carefully selecting daily activities; and concentrating extra hard in conversations.

Volume 10, Number 2: November-January, 2005 My Champion or My Hero By Richard Taylor Editor’s Note: Richard Taylor is a retired professor of psychology who has recently been diagnosed with Alzheimer’s. He resides with his wife in Houston, Texas. He has written a series of essays about his experiences living with the disease and we are grateful for his permission to reprint the following essay in this issue of Perspectives.

What powerful words these are of Bob Dylan for those with Alzheimer's or a related dementia: "He who is not busy being born is busy dying." Early diagnosis does not have to be a death sentence, a time to be “busy dying.” Rather, early diagnosis can be an opportunity to take an outer circumstance one cannot change, and turn that circumstance into a new and meaningful life. This life is "busy being born" every day into some new venture,

I am a big guy, and I was a very smart guy; I never thought of myself as needing protection. But I do. I need to

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be protected from myself and my increasingly frequent misperceptions of what is going on around me. I need to be supported because my self-esteem and self-confidence, which once served as a major attraction for my spouse, are turning into self-doubt and hesitancy. Old age reverses our evolution of independence from childhood. We become more dependent on others to do things for us we formerly did for ourselves. Alzheimer’s quickens this evolutionary reversal and adds many idiosyncratic twists to the process. Its process is slightly different for everyone. Its effect is the same. We become unable to take care of ourselves.

the same as our last anniversary picture. I know I don’t think the same, and neither of us think about each other the same way as we did when we took that picture. Real or imagined personality changes, thinking patterns and fears growing out of the Alzheimer’s diagnosis have shuﬄed our own cards, and our couple’s cards and our family’s deck. Alzheimer’s is changing how I think and what she and I think of ourselves, each other, and us. Before we married I saw my wife’s strength of personality as an attractive attribute. For years since then, I devoted a good deal of my time resisting that strength. I now have an appreciation and admiration for how she uses that strength to support me, to protect me, to nurture me in ways neither of us thought would ever be necessary.

I realize I haven't written much about my caregivers. I am still clear about much of the dynamics and impact this disease is having on me, but I am unclear about how this is impacting my caregivers and me. I have shared my life with them and they with me. We have created a life together, different than it would have been apart. The expectations we had worked out together don’t seem to work as they did in the past. We all still look and sound the same, but I am different and so too are they. I love them. I have lived with them for many, many years. Some of them I have raised. The leader of my caregiver team is my spouse, Linda. As she doesn’t always seem to understand me, it is also increasingly difficult for me to always understand her (not that I was a master at it pre-Alzheimer’s). We look

I’m not sure if she is my champion or my hero. Champions are personal. Heroes are usually shared with others. Champions are more personal; heroes

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are worshiped from afar. Champions generally embrace the values and feelings of those they champion. With heroes it’s usually the other way around. I think she is more my personal champion than my hero. It is a wonderful feeling to know I have a champion. I feel more secure in myself, in my future, and in our future knowing she is there, shield in one hand and lance in the other. What was attracting and then an annoyance, has again become an attraction. More and more, I depend on her constancy, her strength, her sense of purpose, her self-assurance. Being my Champion involves much, much more than remembering to tell me to take my pills. It’s being a best friend, lover, appointment secretary, OnStar advisor, personal cheerleader, constant optimist, ﬁnancial manager, driver, housekeeper, grounds keeper, handy woman, cook, and meeting any and all of my other occasional spoken and unspoken personal needs. “Where are my glasses? What day is it? Where are we going? Tell me again.” Many times she must guess when I need help and when I don’t. Asking for help does not come easy for yours truly. If she guesses wrong, I am not pleased. If she guesses right, I sometimes take it for granted. My spouse has wrapped herself around me, providing enough space for me to sometimes stumble around by my own stubborn self, but not fall and hurt myself. She is my spokeswoman and buﬀer from those who don't understand. She is my advocate with

professionals who sometimes are too busy to give me the attention and support I need. She has always been my best friend, yet now she is there for me in ways that neither of us ever imagined. We have always treated each other as equals and operated from the principal that one plus one equals three. Right now it feels like one plus me equals about three/fourths. I know I am not pulling my own weight. I am pulling her down. She sometimes pulls just for me and sometimes for both of us. Every morning she absorbs the cares of yesterday and willingly faces the increasing cares of today. Every day I see I can pull less and less. I know this must be wearing her down. Like it or not, I am increasingly depending on my champion to figure it out for me. I am depending on my champion to figure it out all by herself. I am depending on my champion to figure it out for the two of us. Daily, more and more of my independence is morphing into dependence on Linda. Thank you Linda for thousands of yesterdays, today, and as many tomorrows as Reminyl, my love for you and my will, and your love for me and your will, create for me and for us.

New Resource The National Institute on Aging Alzheimer’s Disease Education and Referral Center (ADEAR) has recently released their 2003 Progress Report on Alzheimer’s Disease. This extensive and beautifully illustrated booklet

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provides summaries of some of the most important federally funded Alzheimer’s research advances from last year. It also provides an update on current directions scientists are moving in as they pursue new treatments and ultimately, a cure for the disease.

Questions and Answers Q. I’m ﬁnding that the whole process of getting dressed in the morning is pretty overwhelming. It’s taking me longer and longer to do something that used to be automatic. Any suggestions? A. It is very common for persons in all stages of Alzheimer’s to have some diﬃculty with all of the steps involved in getting dressed in the morning. Although we rarely think about it, the process of getting dressed involves a great deal of thinking. We have to be aware of the season and the general temperature of the day in order to decide what kind of clothing to wear. We have to remember and be able to judge whether we have already worn something multiple times and whether it is clean or not. We have to remember where our various articles of clothing are kept and in what order all of it needs to go on. We have to have the coordination to deal with small buttons, zippers, snaps and hooks. The memory loss and other thinking problems associated with Alzheimer’s can make it harder to do all of these things. Some suggestions to consider: Simplify! Put your spring and summer season clothes away during these winter months so you have fewer choices. Get rid of old clothes that you rarely wear to limit clutter in closets and drawers. Lay your clothes out the night before so they are ready for you the next morning. Consider wearing more pull on pants or pull over shirts that make the whole process of getting dressed easier.

Highlights in the booklet include discussions of how healthy aging shifts to Alzheimer’s and the earliest changes in thinking and brain imaging that suggest the onset of disease. Summaries of recent studies are described including new ways to diagnose Alzheimer’s early on in its course, as well as research that helps to better understand what happens to brain cells in the course of the disease. Studies on genetics are reviewed as well as the impact of lifestyle, diet, and other factors on the risk of developing Alzheimer’s or a related disorder. Updates of clinical drug trials that aim to prevent or treat the disease are also discussed. A copy of the 2003 Progress Report on Alzheimer’s Disease can be obtained free of charge by calling Alzheimer’s Disease Education and Referral at 1-800-438-4380. If you prefer to use the internet, you can also ﬁnd the full text of the Progress Report on the ADEAR web site at http://www.alzheimers.org. ADEAR provides a wealth of information for both families and professionals concerned about Alzheimer’s and related disorders and is a valuable resource.

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Give yourself extra time to get dressed. Having to rush is likely to increase stress and confusion.

for persons with heart disease, and is not found in studies involving persons with Alzheimer’s, the researchers discourage any use of high dose Vitamin E supplements. If you are taking Vitamin E supplements for Alzheimer’s or a related dementia, it is important to check with your doctor to determine the risks or beneﬁts in taking over 400 IU of this supplement.

Research Updates Update on Vitamin E At the recommendation of their doctor or because they have heard of its benefits, many persons with Alzheimer’s or a related dementia take high doses (up to 2,000 IU) of Vitamin E. This recommendation is based in part on findings from a clinical trial suggesting that Vitamin E had a small benefit for persons with advanced Alzheimer’s. Vitamin E is an anti-oxidant (something that can be helpful in maintaining healthy cells, including brain cells). Some research also suggests that taking Vitamin E supplements can help prevent heart disease and a few types of cancer, but other research has suggested that there may be serious risks to high doses of Vitamin E including bleeding problems other complications.

Encouraging Results of Preliminary Statin Trial A small preliminary study found that the cholesterol-lowering drug Lipitor (also known as atorvastatin) improved memory, thinking, and symptoms of depression in persons with mild-to-moderate Alzheimer’s disease. There is a growing body of data suggesting that high cholesterol levels, particularly high LDL, increases one’s risk for developing Alzheimer’s. Researchers have also shown excessive levels of cholesterol in the brains of persons who already have the disease. This pilot study headed by Dr, Larry Sparks at Sun Health Research Institute in Arizona, randomly assigned 46 persons with Alzheimer’s to receive either 80 milligrams of Lipitor or a placebo for one year. Participants also stayed on any other currently available Alzheimer’s medications they were already taking. At the end of the year, those study participants who were on Lipitor had a signiﬁcant reduction in their cholesterol as well as a lower rate of Alzheimer’s–related decline than

To better understand this controversy, researchers at Johns Hopkins Medical Institute examined the study results from nearly 136,000 adults who had participated in 19 diﬀerent studies in which Vitamin E was given in high doses. Based on their analysis of these studies, they concluded that intake of Vitamin E in the amounts of 400IU or more daily for longer than a year increased the risk of death. Although the increased risk seems most signiﬁcant

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those on placebo. The Lipitor group also had fewer symptoms of depression at the end of the study. Due to the small size of this study, the findings will need to be replicated before Lipitor or any other statin (a cholesterol-lowering drug), is prescribed for the treatment of Alzheimer’s. The drug company, Pfizer, and the National Institute on Aging are both conducting much larger trials of statins and the results of these trials should be available in about two years. In the meantime, if you have high cholesterol and are not currently taking a statin you may want to talk with your doctor about whether taking one would be of benefit to you.

data in animal experiments suggests that ONO-2506 can slow or even prevent some cell death and a current trial is now underway to see if these ﬁndings can be replicated in persons with Alzheimer’s. If so, it is hoped that the drug can slow the progression of the disease. This study is being conducted in multiple sites across the USA and Canada.

Connecting Persons with Early-Onset Dementia Early-onset dementia is a term applied to persons who are diagnosed with Alzheimer’s disease or a related disorder before the age of 65. Although it is rare, some persons with genetic forms of Alzheimer’s can develop the disease in their late 20’s or 30’s. For others, the onset can be in their 40’s or 50’s when they are at the peak of their career or in the middle of raising a family. Although the course of a progressive dementia is generally no different for a younger person than for an older one, persons diagnosed younger in life often experience unique concerns. They may be forced into early retirement and subsequent financial challenges due to onset of disability, or they may have children or young adults in the home who are affected by their parent’s illness. Since many social and support programs for persons with dementia are primarily directed to older participants, early-onset individuals sometimes struggle to find a peer group and can become isolated. In an attempt

Clinical Drug Trial - ONO-2506 (AMEND)

A new drug, ONO-2506 is currently being tested to determine whether it can stimulate the growth of new neurons (brain cells) in persons with mild-to-moderate Alzheimer’s. The death of brain cells if one of the primary outcomes of Alzheimer’s and results in the thinking and memory problems that are common to the disease. Preliminary

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to develop an international network for persons with early-onset dementia, The Oklahoma/Arkansas chapter of the Alzheimer’s Association is developing an early-onset database of persons around the world who want to communicate with others who have been diagnosed with dementia at a young age.

Support Network International) co-hosted this momentous event. It took almost two years in the planning with people with dementia being included on the planning committee, but the results were well worth the wait. The day started with an optimistic plenary session entitled “Getting the Most Out of Today” by Dr. Les Sheldon, a geriatric psychiatrist from Vancouver. His talk centered on broadening our perspective, being proactive instead of reactive when it comes to being diagnosed with dementia, and lobbying with our Alzheimer’s Associations and governments to get better help for people with early-stage dementia. In the second session, Brenda Hounam, a person with dementia and Linda Westbrook, a care partner talked of their journeys with dementia. Brenda has the honor of having a song called “One More Memory” written and recorded on CD for her. The words tell what it is like to have Alzheimer’s. Singer, Sara Westbrook, performed the song live at the forum and it was a very moving emotional experience. Information about the CD can be obtained at www.onemorememory.com After lunch, Marilyn Truscott, a person with dementia spoke on “Adapting and Enhancing Leisure Activities” and Marge Dempsey and Lynn Moore (care-professionals from Alzheimer Society oﬃces in Ontario) spoke on Advocacy and Dementia. In the last session, “Planning Ahead” attorney,

Report on Innovative Conferences for Persons with Early-Stage Dementia By Lynn Jackson Editor’s Note: The following summaries are provided by Lynn Jackson, president of the Dementia Advocacy and Support Network (DASN). Lynn is a former nurse diagnosed with dementia. She resides in Richmond, British Columbia, Canada. In her articles, Lynn refers to a few web sites for further information. If you do not have access to the internet, call a family member or your local Alzheimer’s organization and ask them to explore these web sites. A Changing Melody Forum November 6th, 2004 will go down in Canadian history! It was the day “A Changing Melody – A Learning and Sharing Forum for Persons with Dementia and Their Partners in Care” took place in Toronto, Ontario, Canada. The Murray Alzheimer Research and Education Program (MAREP) at the University of Waterloo, the Alzheimer Societies of Canada and of Ontario, and the DASNI (Dementia Advocacy and

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Judith Wahl, spoke of the importance of advance care planning.

dementia but also care partners, care professionals, and others who have an active interest in our well-being. Each day was devoted to a diﬀerent theme. Day One was called “Help Our Partner”. We discussed “what works for me” and “what works for us” highlighting how we people with dementia can help our care partners and in turn how they can best help us. Joann Webster from the Oklahoma-Arkansas Alzheimer Association told us about the US Alzheimer’s Association’s plans to respond to the speciﬁc needs of early-onset (persons diagnosed before age 65).

The day was capped off by the premier of a brilliant play called “I’m Still Here” based on the experiences of people with dementia. Christine Jonas-Simpson, Gail Mitchell, and playwright, Vrenia Ironoffski captured exactly what it’s like to get a diagnosis of dementia, how the person with dementia feels, and how their friends and family react. The play will be an excellent teaching tool for the general public. The whole day was very informative, enlightening, inspirational, and insightful. Judging from the comments and evaluations received afterward, it was a huge success. Hopefully this forum will be the first of many of its kind to come.

Day Two’s theme “Help Each Other” was devoted to learning about DASNI. I gave an account of DASNI’s activities at the past Alzheimer’s Disease International (ADI) conferences in New Zealand, Spain, Dominican Republic and Japan. Our participation in ADI working groups, as well as speaking in plenary sessions and workshops and having a booth at ADI conferences, has added to this awareness and opened the eyes of many people around the world. They now know that there is a life after diagnosis.

DASNI Camp-Conference 2004 “No Time to Lose” DASNI, (Dementia Advocacy and Support Network International), an internet-based support network organized and operated for and by people with dementia, held its third “in-person” conference this past October 29-31st. Sixteen people with dementia and thirteen care partners attended the Oklahoma conference. They came from Hawaii, Maine, Missouri, Texas, Arkansas, California, and Oklahoma as well as from Canada and Brazil. Since DASNI’s inception in 2000 we have grown to include not only people with

That afternoon Judy Robbe a care-professional from Brazil spoke about her activities in her country as a dementia care support liaison and about how to get the most out of each day. That evening the whole group was treated to a dinner generously donated

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by Verna Schoﬁeld a (social worker from New Zealand) who has helped push the early-stage movement forward around the world.

Our goal for this coming year is to focus on our email community and chat room. We want to practice what we preach. Many of us have been thinking globally and now we want to act locally and get back down to the grass roots of our organization. We want to help the people who ﬁnd us on the Internet, give them support, and direct them to available services. DASN International’s website is at www.dasninternational.org.

Day Three’s theme was “Help the World at Home.” Seasoned DASNI members shared their past advocating activities with new members who wanted to learn how to help others with early-stage dementia. DASNI’s slogan “Think Globally, Act Locally” highlighted that advocating starts right in our own community. From our computer keyboards, to media interviews, to speaking at our local and national Alzheimer Associations, we can all do our part. We discussed DASNI’s continued vision for the future and agreed to keep directing people to Alzheimer’s Associations worldwide to help ensure that they get the care they need. We were also very pleased that one of our biggest goals had been realized. There are now people with dementia on some local and national Alzheimer Association Boards of Directors around the world and hopefully, more positions will be opened up for us in the near future. One of our biggest achievements is that in 2003 a person with dementia was elected to the ADI (Alzheimer’s Disease International) Board of Directors ensuring that a person with early-stage dementia can represent us around the world.

Volume 10, Number 3: February-April, 2005 Mental and Physical Fitness: Exploring ways to stay mentally and physically active Many people have heard the old saying, “use it or lose it.” The thought is that if you don’t continue to use and strengthen your mind and body through physical and mental fitness, you may lose your functional and mental abilities. Although there are certainly many well-known physical, emotional, social, and mental benefits to keeping your mind and body active, the saying may be too simple when applied to Alzheimer’s. Many mentally and physically active people develop Alzheimer’s or a related disorder while others who have had little opportunity to develop their minds, or who have little interest in physical exercise, seem to live to a ripe old age free of any significant cognitive (thinking) or

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physical problems. The workings of the body and brain are complex, but many scientists and other Alzheimer’s specialists support the idea that if you have Alzheimer’s, it is beneﬁcial to exercise both your mind and body and to continue working, to the extent possible, on your mental and physical ﬁtness.

twice a week for a total of 24 sessions could improve in some specific areas of thinking and functioning. The thinking exercises were designed to address specific areas of ability such as recognizing faces, making change, and remembering dates and personal information. During the study, research participants were also asked to maintain a “memory notebook” and encouraged to record appointments, medication schedules, and contact information for relatives, friends, and doctors. They reviewed this notebook twice daily. Although the research findings that people with Alzheimer’s can maintain some abilities for a longer period of time with specific training are very encouraging, we need to see more studies of this kind to further validate the findings. In the meantime it could be beneficial to start your own memory book. Put in a calendar with important dates, pictures of people and places you want to remember, and specific personal information that is important to you. Review the information a few times daily and test yourself on it or have your care partner work with you.

Mental Fitness

It has long been thought that once people develop Alzheimer’s it becomes very diﬃcult to learn new things or to improve memory and thinking abilities. But this thinking is changing. Although there is no proof that mentally stimulating activities slow the progression of Alzheimer’s, recent research suggests that speciﬁc cognitive training may help people with mild Alzheimer’s maintain some abilities for a longer period of time. In one well-designed study conducted at the University of Miami School of Medicine and Mount Sinai Medical Center in Miami Beach, Florida, Dr. David Loewenstein and colleagues found that people with mild Alzheimer’s who participated in two 45-minute sessions of structured cognitive rehabilitation

Other forms of mental stimulation include more general activities and thinking exercises such as puzzles and word games, listening to music, reading, or doing creative or artistic projects. Although Alzheimer’s aﬀects your short-term memory, many long-term memories are intact and it can be an enjoyable experience to reﬂect on

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positive memories in your life and to share them with others. Although participation in these activities may not result in the speciﬁc gains found in the cognitive rehabilitation exercises, few would argue with the idea that participating in mentally stimulating activities is good for one’s well being. Increased mental stimulation may also lead to more social interactions that can maintain personal connections and improve your mood and coping abilities.

sleep are well known and some people also report that they think more clearly or are more alert after they have exercised. Pick a set time each day to do at least a half hour of physical exercise. Take a walk, go to a local senior center for an exercise class, or join a gym and have a trainer with expertise in senior ﬁtness help you with a stretching or gentle weight training routine. In home exercise is also possible with a stationary bicycle or other piece of equipment or exercise videos that lead you through a daily routine. Consistency is important, as it is easy for the days to go by without attention to physical exercise.

Cognitive rehabilitation and mental stimulation are both ways of working on your mental ﬁtness. Ask yourself each morning what you plan to do today to exercise your mind. See page 3 for a fun new resource and try and include others in your mental ﬁtness plans.

Physical and mental ﬁtness are two sides of the same coin and both are well worth the investment of your time and energy!

Physical fitness Countless research studies report on the health benefits of physical exercise. Physical exercise helps to maintain blood flow to the brain and maintains the muscle strength necessary for good physical functioning. Without enough things to keep you alert, involved, and physically active, it is not uncommon for people with Alzheimer’s to sleep too much during the day or to become depressed or withdrawn. Excess sleep during daytime hours can disrupt nighttime sleep patterns. The beneficial effects of physical exercise in reducing symptoms of depression and regulating

Reference: Loewenstein, David et.al. (2004). Cognitive rehabilitation of mildly impaired Alzheimer’s disease patients on cholinesterase inhibitors. American Journal for Geriatric Psychiatry 12:4, p.395-402.

New Resource: “Thinking Cards” Although many people with Alzheimer’s disease or a related disorder are interested in keeping their minds active and stimulated, it can be diﬃcult to ﬁnd or create enough varied

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activities. A person can only do so many crossword puzzles! Now there is a new and fun way to give your mind some exercise through the use of Attainment Company’s recently published “Thinking Cards.” This set of 100 cards is designed for older adults with Mild Cognitive Impairment or early-stage Alzheimer’s and was developed by a team of aging and dementia experts (Marge Engelman, PhD, Danielle Leuthje, MSSW, Kim Petersen, MD, and Gail Petersen, PhD). Some cards have an exercise involving reminiscing or thinking about things in new and stimulating ways. Others oﬀer advice for managing memory loss. The

authors note that while there is no research to show that these exercises will slow or stop the progression of Alzheimer’s or a related disorder, they can provide activities to keep the mind stimulated and hopefully strengthen existing skills. “Thinking Cards” can be used on your own or with the involvement of another person. They can also be interesting exercises to discuss in early-stage support groups or activity programs. The cards come with a small but very informative booklet that reviews brain functions and suggests many helpful tips for coping with changes in memory and other thinking abilities. even small strokes can complicate Alzheimer’s and worsen symptoms. There has also been much talk of the possible beneﬁts of antioxidants in maintaining brain health. Antioxidants may help to reduce inﬂammation in the brain and foods high in antioxidants can be a helpful and pleasant addition to the diet. Dark green leafy vegetables as well as berries, particularly blueberries, are rich in antioxidants.

Questions and Answers Q. Does diet have any positive or negative eﬀect on Alzheimer’s? A. There is a growing body of research that is examining ways in which diet may increase or reduce one’s risk of developing Alzheimer’s, but the eﬀects of diet on symptoms or progression of the disease for those already diagnosed is not clear. What scientists are suggesting, however, is that what is good for the heart is also likely to be good for the brain. There may be some relationship between high cholesterol and Alzheimer’s, so it is wise to keep your cholesterol within the limits advised by your doctor and adhere to a diet that maintains a healthy heart. Cardiovascular disease and incidents of

The potential benefits of omega-3 fatty acids is also making the news and may be helpful to the health of brain cells. Foods rich in omega-3 fatty acids include eggs, organ meats, fish, shrimp, clams, spinach, flaxseed oil (linseed oil), walnuts, and canola oil. Although dietary changes cannot cure Alzheimer’s, they may give your brain cells a little boost and also reduce your

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risk for other health problems that can worsen symptoms of the disease.

who has early-stage Alzheimer’s. Jim and I met in April, 2003 at the Washington DC Alzheimer’s Association Public Policy Conference where he eloquently spoke on a panel that I moderated about his experience of living with Alzheimer’s.

MAILBOX Editor’s note: In the following correspondence, Patricia refers to the word “hippocampus.” The hippocampus is the brain region that is largely responsible for processing incoming information and getting it into long-term memory storage. The hippocampus is aﬀected early in the course of Alzheimer’s and accounts for many of the memory problems that occur with the disease.

Dear Lisa, For the past three years, my wife and I have been attending monthly support groups of the Rochester chapter of the Alzheimer’s Association. While I am busy co-leading a group for people with early-stage dementia, my wife is attending a care partner’s support group. As you might imagine, we talk in the car on the way home. Without naming names, she will often mention a problem or concern that a person in her group brought up regarding their loved one with dementia. Other people in her group and/or the facilitator will empathize and often oﬀer suggestions for coping with the situation in the future.

Dear Editor, I was recently diagnosed with early-onset Alzheimer’s disease. Upon coming across the word “Hippocampus” in my research, I felt a need to write something about the word and a poem materialized: Aura of Love When your Hippocampus dances And forgets the melody Your early-stage performance Could be a catastrophe But when your friends and family Look on with love and pride You will know it’s more important That at least they know you tried.

In September, 2004 it dawned on me that although the care partners’ support group is a valuable resource for its members, it isn’t available to them when a problem arises with their loved ones at home. So I approached staff of our local chapter about offering a time-limited training group for preventing, resolving, or at least limiting the challenging behaviors of their loved ones with dementia. They wholeheartedly supported the idea and a social worker on their staff, Paula Casselman, and I

Patricia O’Neal Chudacoﬀ Oakland, California Editor’s note: The following letter comes from Jim Ruppert, a retired social worker

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developed a nine-hour (three 3-hour sessions) training for interested care partners. There were 12 people in the group. The ﬁrst theme of the training was to introduce the care partners to the importance of taking care of themselves. The second thrust of the training was to teach them a variety of verbal and non-verbal skills and strategies that would help them minimize the daily stressors and problematic behaviors of their loved ones with dementia. The program received high marks from the participants.

they experience and strategies they can employ to reduce their stress and take care of themselves. The Six Dimensions of Wellness is modiﬁed from a handout I received many years ago. Unfortunately, the author did not place his or her name on that document and cannot be acknowledged for the work.” Editor’s note: Although Jim refers to the value of these six dimensions of wellness for care partners, they are equally valuable for people living with Alzheimer’s. As you read this article, how would you evaluate your state of wellness across these categories? What might you or your care partner do to improve on any areas that need attention?

I am distributing the training materials from this series in the hopes that it will assist others in their eﬀorts to help families living with dementia. For more information about the training, contact Paula Casselman at 800-724-0587 or email her at Paula.Casselman@alz.org.

Wellness is an active process through which an individual becomes aware of, and makes choices about, a more successful life. Those choices are greatly inﬂuenced by a person’s self-concept, their culture, and their environment. Wellness is a positive approach to living – an approach that emphasizes the whole person.

Sincerely, Jim Ruppert Pittsford, New York

Six Dimensions of Wellness Wellness can be divided into six basic dimensions:

Note from Jim Ruppert: “Many years ago a colleague of mine and I oﬀered a series of stress management workshops for school teachers and administrators. In one of the books I read, the author talked about the six dimensions of wellness. I liked that concept a lot and put it into this form. It was very helpful during the care partner training program when addressing the need for them to take care of themselves. We used this as a springboard to discuss the stressors that

Physical Fitness and Nutrition The degree to which one maintains cardiovascular health, ﬂexibility and strength, takes steps to prevent or recognize early signs of illness, and chooses foods that are good for one’s health.

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Emotional The degree to which one has an awareness and acceptance of their feelings. This includes the degree to which one feels positive and enthusiastic about oneself and one’s life. It also includes the capacity to control one’s feelings and behavior, to express one’s feelings skillfully, realistically assess and accept one’s limitations, and the ability to be aware of and eﬀectively manage life stresses. Social – The degree to which one recognizes their interdependence with other people and has established a solid social support network. This dimension also includes the ability to empathize with other’s needs and feelings, a willingness to take actions that contribute to the welfare of others, and ﬁnally, your ability to “let the child out” and to just have fun with family and friends.

Occupational or Leisure Time The degree to which you gain a sense of competence and satisfaction from your work and true enjoyment from your leisure time activities. Spiritual This is a measure of one’s ongoing involvement in seeking meaning and purpose in one’s own life and in the lives of others. It includes an appreciation for the depth and expanse of life and the natural forces that exist in the universe. It is an awareness of the “valuing process” – the process by which we choose, prize, and act consistently upon those things that are the most important to us in life.

Intellectual The degree to which one engages his or her mind in creative and stimulating mental activities and seeks out available resources to expand their knowledge base. This includes an eagerness in asking others for help without fear of revealing your ignorance in regard to certain skills or information.

Research Updates Neuroimaging Initiative Neuroimaging involves methods of taking pictures of the brain and includes procedures such as magnetic resonance imaging (MRI) and positron emission tomography (PET scan). A new project, the Alzheimer’s Disease Neuroimaging Initiative, will use MRI, PET, protein biomarkers (substances found in blood, urine, and spinal ﬂuid), and clinical evaluations to track over three years

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individuals who have no symptoms of dementia, as well as those with mild memory changes or early Alzheimer’s. These imaging methods are being studied to determine changes in the brain that could help doctors make an accurate diagnosis of Alzheimer’s or a related disorder, select who may be most appropriate for speciﬁc treatments, and to monitor treatment eﬀectiveness or response by looking at changes in the brain seen through these various types of pictures.

better over the course of the disease, few eﬀorts have been directed towards actually stopping disease progression or reversing some of the symptoms. In 2001, Elan Pharmaceuticals pioneered the development of a vaccine that aimed to actually prevent the formation of damaging “plaques and tangles” (abnormal protein deposits that form in the brains of people with Alzheimer’s). In laboratory experiments on mice that were genetically engineered to have Alzheimer’s, the vaccine actually helped to reverse some of the symptoms of the disease. This was a very exciting ﬁnding.

The Neuroimaging Study will take place in approximately 50 sites across the United States and Canada. In April, researchers will begin recruiting and enrolling about 800 adults ages 55-90, including 200 people without memory problems, 400 people with mild cognitive impairment (MCI), and 200 people with mild Alzheimer’s. This is an important opportunity to contribute to scientists’ abilities to accurately diagnose and track the progression of Alzheimer’s disease and related disorders. Questions and answers about the study and a list of participating sites are available by contacting Alzheimer’s Disease Education and Referral (ADEAR) at 1-800-438-4380 or by checking the organization’s web site at http://www.alzheimers.org.

In 2002, an international human trial of the vaccine, AN-1792, was started, but had to be halted midway through the study due to a dangerous brain inflammation experienced by a small percentage of the participants. However, spurred on by other promising preliminary results of this study, Elan did not give up on the concept of the vaccine. Amidst much competition to perfect this treatment method, Elan paired with Wyeth Pharmaceuticals and jointly developed a new vaccine called AAB-001 that they expect will have less risk for unwanted side effects. This new promising vaccine has been in preliminary trials in the United States for the past 18 months and no side effects have been reported. A new trial is starting this spring and is seeking 180 participants with mild Alzheimer’s. A small trial is also planned for Britain

Update on Alzheimer’s Vaccine Although most research towards the treatment of Alzheimer’s has focused on medication to help people function a bit

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and Finland. To ﬁnd out if there is a study site near you, try contacting your local chapter of the Alzheimer’s Association.

events, a music program, and luncheons at local restaurants. Those who regularly attend this uplifting program believe that it is beneﬁcial for many reasons and say:

Mind Boosters: An Early-Stage Memory Loss Program

“It’s improved my attitude and energy level.”

By Kristen Einberger Mind Boosters is a weekly program of mental stimulation and socialization for people with early-stage Alzheimer’s that began in Napa Valley, California in April, 2003. Its premise is that people living with early memory loss can beneﬁt from memory retraining, social interaction, physical and mental stimulation, community involvement, and social support and camaraderie. The program meets weekly from 11:30-3:30. A fee of $30 is charged that includes lunch and all of the day’s activities. A sliding fee scale is available.

“I’ve become more involved in the community.” “We cheer each other’s progress and do not criticize each other’s shortcomings.” “I’m better able to understand what’s going on with my memory.” “My self esteem is greatly improved.” Participants also create many helpful coping tips that they share with one another including the following: Memory Tips That Work for Us Make lists for everything you need to remember. Keep the list in the same place all the time. Keep an appointment book and keep it with you at all times. Take notes and go back and read them. Do something as soon as you think of it; don’t wait until later. Keep a memory container of some sort by the front door. Put everything in this container that you need to take with you when you leave. Keep a calendar to write on and put important dates on it.

Each meeting provides mental and physical activities and time to socialize with others who are experiencing similar issues with memory loss. Group members learn new strategies for improving or maintaining cognitive skills and take time during each meeting to practice them. Weekly lunch outings and monthly ﬁeld trips build community and a feeling of belonging. Participants focus on their remaining strengths and on promoting their quality of life. They enjoy community involvement through ﬁeld trips, special

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Really pay attention. Repetition – the more you say something, the more likely you will remember it. Try to avoid distractions such as excess noise and movement. If someone interrupts you, ask them to please wait until you have ﬁnished your thought. Visualize what it is you need to remember. Use the alphabet. Think ‘could it start with an a, b, c….’

how to manage the logistics of getting around. For others, however, a diagnosis of Alzheimer’s prompts them to review long-term plans and not put oﬀ until tomorrow something that might be enjoyable today. One woman states, “It does make me want to do things now, like traveling, that I might have postponed until later years. I want to see London and Paris." Although there may be diﬀerent considerations to take into account now, travel can continue to be a very meaningful activity for many people with Alzheimer’s. Some people may need to modify plans due to particular symptoms, but there are a number of ways in which people can continue to make travel a fun and rewarding experience.

Mind Boosters is a community outreach program of the Adult Day Services of Napa Valley and receives funding from Brookdale Foundation, the Area Agency on Aging, and the Redwood Caregiver Resource Center.

The primary symptom of Alzheimer’s is memory loss. This change in memory can increase your risk of becoming disoriented or overwhelmed when in a new place. You may want to take a few small trips to see how you adjust before embarking on a longer trip to an unfamiliar place. Try a few shorter "weekend away" trips ﬁrst to see how you do in a new environment. If new environments are stressful or too challenging, a visit to a more familiar destination such as the home of family or close friends can be preferable. It can be very helpful when traveling to let others know about your memory problem. For example, Mark, a widowed avid traveler, now takes trips

Volume 10, Number 4: May-July, 2005 Traveling and Vacationing Making Memories with Memory Loss The summer months are here and for many people, this time of year has traditionally been a popular time for travel. Days are longer and warmer and kids and grandkids are out of school and may have more vacation time available for family travel. But with the onset of memory loss and other changes in thinking or functioning, it is not uncommon for people with Alzheimer’s or their families to wonder if they should continue traveling. Some worry about the added stress of new places or

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with friends instead of traveling alone. He has informed all of them of his Alzheimer’s so they can keep a closer eye on him and this has helped him feel much more conﬁdent about continuing his travel activities. His friends have taken on more responsibility for directions and some logistics of trips, and now enjoy his company on these adventures.

Return" program. This nationwide program enables police, community agencies, and private citizens to identify someone with memory loss and help him or her return to home. Call your local chapter of the Alzheimer’s Association for information on this valuable resource. Bring a nightlight for your hotel room bathroom so you can ﬁnd it more easily at night.

It can also be helpful to simplify your travel itinerary. Staying in a different place each night can be disorienting and tiring. Try seeing fewer places in greater detail so that you can return to the same hotel or home each night. This also allows for more time to get acquainted with new surroundings. Some people enjoy small cruise ships because the boat environment allows for consistency while also affording the opportunity to land at different ports for day trips.

Pack lightly! Too many items and bags create more opportunities to lose things. Ask your pharmacist for a 7-to-30 day (depending on length of trip) pillbox or organizer. This eliminates carrying multiple bottles of medication and can assist with taking medicines on schedule. Ask your doctor about a mild sleeping medicine to be used only if needed. Many people report diﬃculties sleeping when in new areas. Lack of sleep and jet lag can increase confusion and disorientation.

Although changes in memory can add some new considerations or challenges to travel, it is important to keep your mind stimulated and to maintain as many previously enjoyed activities as possible. If you want to continue traveling and vacationing, the following tips may be helpful as you plan your next adventure.

Schedule in “down time” during your trip when you are not on the go and can rest. Although some people enjoy all of the stimulation of travel, many others ﬁnd that they need more rest or quiet time in between all of the activity.

Travel Tips Have identiﬁcation with you at all times. One form is a bracelet through the Alzheimer's Association's "Safe

Drink plenty of ﬂuids. Travel (even in cool climates) can be dehydrating

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resulting in worsened memory and concentration problems. If you are going to see old friends or family, review photographs prior to the trip as a memory refresher.

Helpful New Resources For Physical Well-Being Gentle Chair Yoga Throughout the medical and scientific literature, research repeatedly reinforces the physical and mental benefits of exercise. Exercise continues to be extremely important as we age and can reduce risk for heart disease, falls and fractures, depression, and perhaps, even Alzheimer’s disease. Exercise does not have to be strenuous and can involve gentle aerobic activity (increases the heart rate to promote a healthier heart) and certain exercises that can promote flexibility or muscle strengthening. In the past decade, many health practitioners have rediscovered the physical and mental benefits of yoga as a way to combine aerobic exercise with muscle strengthening and stretching. Yoga originated in India, but has found its way into mainstream western medicine. It is often used in physical rehabilitation or recommended by health practitioners for the enhanced flexibility, strength, and balance that can come through yoga practice. Often, when people think of “yoga”, it is associated with twisting pretzel-like poses or forms of meditation. In fact, there are many schools and styles of yoga that are suited to people of all ages and physical abilities.

Take photographs of your trip or if you don’t use a camera, make sure that someone does. These photos will prompt your memories about your trip when you return home and can help you share your experiences with others. Although it takes eﬀort, try making a few written notes about some of the things you are doing and the people you’re seeing each day. Writing notes or keeping a simple diary may help to prompt your memory of each day’s events and you’ll have notes to look back on when you return home. Write postcards to friends and family. Ask them to keep them for you so you can have them as mementos upon your return home. Bon Voyage!

Eighty-four year-old Vera Paley has practiced yoga for over 40 years and has been a certiﬁed yoga instructor for over

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20 years. She developed a video program of gentle chair yoga as a means of exercise for older people. She states, ”Gentle chair yoga is for anyone who, by sitting in a chair, can do breathing, stretching, and relaxing yoga exercises and experience a pleasant 30-minutes of guided, healthful body work.” Available on either VHS tape or DVD, this program can be a calming yet physically therapeutic means of exercise that can be done alone, with a partner, or with others in a group.

own home with only a stable chair for equipment.

MAILBOX Editor’s note: The following poem is written by a man with Parkinson’s who also has the early-stages of memory loss. We are grateful for his submission of the poem to the newsletter. A Special Poem By Glenn Cray Sometimes I’m at a loss Just to ﬁgure out who is boss.

A Key to Fall Prevention Lifeline Personal Response and Support Services is well-regarded as an excellent personal emergency alert system for seniors. Persons living alone or at risk for falls can wear a bracelet or necklace with an alert button. Should you fall or have an emergency and not be able to get to the phone, you can press the button on the bracelet or necklace and the paramedics will be notiﬁed to come check on you. This program is available for a reasonable monthly fee. Now Lifeline is providing free of charge, a very helpful pamphlet entitled “Fitness – A Key to Fall Prevention.” This brochure is based on ﬁndings that physical activity helps maintain the ability to live independently and reduces the risk of falling. It provides a series of 14 simple, illustrated exercises that can be done from a seated or standing position. These exercises are easy to do in your

It is partly Parkinson’s taking charge When I forget simple things Like people’s names And names of streets. Luckily, I recover and improve At remembering phone numbers Or where to send a letter. Well, stick with me, I’m trying hard To keep up with the modern day bard. Between two wives and seven children Plus three grandchildren And daughters-in-law For me, it is the biggest family I ever saw. Weekly news comes pouring in with New jobs to hear about From many sources. All that keeps me fairly well informed. Now I no longer feel so forlorn. Thus back to the beginning

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And to which boss is winning.

Consider asking her to make a list of the people that she feels should be informed of your diagnosis. You may be able to choose a few trusted family or friends to start with. Some people with Alzheimer’s write a letter to family members and friends to tell them about the diagnosis. This lifts the burden of having to repeat the news over again to each person and let’s you say what you want in your own words.

Questions and Answers Q. My wife wants to tell family and friends about my Alzheimer’s diagnosis but I am a private person and would prefer to stay quiet about it. What should I do? A. It is not unusual for people with Alzheimer’s and their family members to have diﬀering opinions about sharing the news of a diagnosis. It is important to know that this process does not have to happen all at once and it is possible that you and your wife can come to a compromise.

Research Updates New Vaccine Trial Up and Running Although the cause of Alzheimer’s disease is still not certain, many scientists believe that a protein called “amyloid” is at the core of the problem. Amyloid is a natural protein in our bodies. However, in people with Alzheimer’s, this protein is thought to be processed diﬀerently and results in sticky “amyloid plaque” formations in the brain. These plaques likely contribute to the death of brain cells and scientists hope that by preventing plaques from forming, they can prevent, stop, or even reverse the course of Alzheimer’s.

Try to understand each other’s perspective. How would each of you feel if you were in the other’s position? What do you think will happen if others know about your diagnosis? Do you fear that you will be treated diﬀerently or that there will be other negative consequences? Not everyone will respond in the same way to your news. You may ﬁnd that others have noticed changes in you and are not too surprised by the news. Others may be surprised and respond with disbelief or need more information about Alzheimer’s.

A few years ago in an international vaccine trial, participants with Alzheimer’s were vaccinated with a fragment of the amyloid protein in the hope that they would develop antibodies to the protein. These antibodies would then ﬁght further accumulation of amyloid protein in the

Although you are a private person, it is likely that you and your wife would beneﬁt from being able to talk with a few other people about the news.

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brain. This method had shown considerable promise in animal laboratory studies. During the human vaccine trial, however, a small percentage of participants developed a brain inflammation from an over stimulation of their immune system following treatment with the vaccine. The study was stopped midway due to this dangerous side-effect. However, through various means, researchers were able to determine that the vaccine was working effectively to lower the amount of brain plaques and improve thinking in some of the study participants. These encouraging findings have been an incentive for pharmaceutical companies to improve the vaccine so it does not cause an inflammatory response. Now USA based Elan and Wyeth pharmaceutical companies have collaborated to create a vaccine called AAB-001 that they believe will be better tolerated. This time, they will vaccinate with the actual amyloid protein antibody itself rather than having the body produce its own antibodies to the protein. In giving the antibody directly, researchers hope to avoid the dangerous immune system response that occurred in the first trial.

Alzheimer’s Disease Education and Referral (ADEAR) at 1-800-438-4380. International Trial of Lecozotan

The AAB-001 vaccine trial will be conducted in 30 centers across the United States and will enroll a total of 180 study participants with mild-moderate Alzheimer’s. To ﬁnd out if there is a site near you, check www.ClinicalTrials.gov or call

As people with Alzheimer’s and related disorders are diagnosed at younger ages and at earlier stages in the course of the disease, many more newly diagnosed people are seeking ways to make meaningful contributions to the work being done in all arenas of care and

Lecozotan SR (formerly called SRA-333) is a new drug under investigation for the treatment of Alzheimer’s. Lecozotan SR acts in the brain by increasing the level of chemical substances involved in memory, speciﬁcally serotonin and glutamate. It is hoped that the drug can activate these brain chemicals in people with Alzheimer’s and provide a new treatment for improving their memory and thinking. The drug is not directed at stopping the progression of the disease, but researchers hope that it can help improve symptoms. Up to 75 centers in approximately 10 countries worldwide will participate in the study of Lecozotan SR including the US, Canada, Argentina, Australia, South Africa, and sites across Europe. There is no speciﬁc contact number for this trial at this time, but check with your local chapter of the Alzheimer’s Association to see if they can obtain further information for you.

The Scottish Dementia Working Group

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treatment. Although some are ﬁnding their voice through volunteer eﬀorts with their local Alzheimer’s organizations, many have not been given any roles within their community agencies or may feel on the fringes of work being done on their behalf.

member of the Scottish Dementia Working Group. The following is transcribed and edited down from Doreen’s talk given in Kyoto: “I was asked to join a small group of people who were getting together to start a working group solely for, and run by, people with dementia. With the conﬁdence I had from my small support group I didn’t need persuading. I said “Yes” immediately. With the support of Alzheimer Scotland and workers from other dementia agencies, we became the Scottish Dementia Working Group. I’m very proud to say it’s one of the ﬁrst of its kind, although if we do our work properly it won’t be the last. We now have around 25 people with dementia from across Scotland on our mailing list. We meet as a national group every second month. Between 10-15 people with dementia manage to get to the meetings. As a group working together, we want to tackle all the issues we have about dementia, and the list is long.

In Scotland, an innovative and very eﬀective new group has formed to help empower people with Alzheimer’s and related disorders to have a voice and a more direct role in designing and delivering dementia education and care. The Scottish Dementia Working Group is an independent group run by and for people with dementia and funded by Alzheimer’s Scotland and a charity called Comic Relief. The Working Group aims to improve services to, and improve attitudes towards, people with dementia. Doreen, a 47–year-old woman with frontal lobe dementia (a form of dementia similar to Alzheimer’s) traveled to the meeting of Alzheimer’s Disease International in Kyoto in 2004 to tell the international audience about her experience with the Scottish Dementia Working Group. She described her shock and withdrawal after being diagnosed with dementia at such a young age and the value of being befriended by Eileen, a counselor from the local chapter of Alzheimer’s Scotland. Doreen joined a local support group for people with dementia and this led to her participation as a founding

We want to change the way that people

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think about and view dementia - people such as employers, the police, people in caring professions, schools, and in other settings. We want to tell people that although we have memory problems we are not stupid. We can make some decisions for ourselves. We like to be spoken to, and not over our heads about the things that concern us. We want to teach people that we are able to make choices in things that concern our day-to-day lives. We are not useless.

parliament on World Alzheimer Day; taking part in training videos for health and care workers about working with people with dementia; and producing information about our group and leaﬂets for newly diagnosed people. I think our greatest achievement is that we have been awarded £87,000 from a charity named Comic Relief that is being match funded by Alzheimer Scotland so we now have money to pay for a national worker to work for us for the next 3 years.”

The Scottish Dementia Working Group has identiﬁed three main areas that we want to campaign about. These are the areas of early diagnosis and post diagnosis support services, respite care, and access to medication. We will also continue to campaign for better services. I live in Glasgow, in the urban part of Scotland where we are fortunate to have good services. People in the Highlands and the more rural areas of the country are not so lucky. If we can change and improve anything then our legacy will be a better life for the people who come after us.

In her Kyoto talk, Doreen also provided valuable advice to Alzheimer’s chapters or organizations who may want to be more inclusive of people with dementia and involve them in similar working groups. She says: “Firstly, be aware that this kind of work does not happen overnight. From my own experience, I needed to come to a small support group to begin with. This allowed me to build up my conﬁdence and to share my thoughts with people I got to know well and trusted. This kind of work is also not cheap. People with dementia are likely to need the assistance of support workers to actually get to meetings and to take part in the business of the meetings. We have been generously supported by Alzheimer Scotland and other local dementia services. We could not manage without this.

The Scottish Dementia Working Group started formally in April 2003. We have achieved a great deal with help from our friends in Alzheimer Scotland and other agencies and a lot of hard work from ourselves. A few of our proudest achievements so far have been: trips to other parts of Scotland to encourage people that groups of people with dementia can and do work; training sessions on working with the media to get our message across; speaking to the Health Minister at the Scottish

We have found that our meetings need to combine business with a social aspect. We build in regular breaks so that people have time to talk informally and do not have to

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concentrate for too long at a time. We have a planning meeting before every full meeting so that we can make sure we have a mix of activities. If we have a guest speaker we ask them to not speak longer than 10-15 minutes and to put up key phrases or memory prompts on ﬂip charts or slides. We also always try to break into small discussion groups so that people who do not like speaking out in a large meeting get the chance to have their say.

Doreen is a powerful voice for the ability of people with Alzheimer’s or a related disorder to make a real diﬀerence. The Scottish Dementia Working Group is a role model for eﬀective collaboration between people with dementia and their local and national Alzheimer’s organizations. If you would like to learn more about the Scottish Dementia Working Group, you can review their excellent website at www.alzscot.org. If you do not have access to the website, contact your local Alzheimer’s Association chapter and ask them to research the program for you. It could be the beginning of a positive working relationship!

To make sure that our meetings really are run by people with dementia, only people with dementia are allowed to be full group members and to vote. We always listen to what our supporters have to say but they do not have voting rights.”

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VOLUME 11

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Volume 11, Number 1: August – October, 2005 A Call to Action Towards Greater Involvement with the Alzheimer’s Association Help for Alzheimer Families Affected by Katrina Facing Alzheimer’s Disease: Resilience and Empowerment After a Diagnosis Volume 11, Number 2: November - January 2006 Thoughts on Maintaining Quality of Life Speaking Out: A Statement to Congress from an Alzheimer’s Advocate Volume 11, Number 3: February-April, 2006 Lost, Stolen, or Strayed by Brian McNaughton Program Spotlight National Alzheimer’s Association Advisory Group of People with Dementia Understanding and Participating in Clinical Trials Volume 11, Number 4: May-July, 2006 Coping with Alzheimer’s Attitudes and Ideas Together: Sharing the Experiences of an Early-Stage Support Group by Dayna Morrow and Participants of the Early Stage Support Group in Montreal, Quebec, Canada

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Oh How Can I Tell You by Peter Beeson Alzheimer’s Website Wins Award

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A number of Alzheimer Associations and Societies in diﬀerent countries (including Canada, Australia, and the United Kingdom) and Alzheimer Disease International (ADI) have made important inroads in recognizing and encouraging the contributions of people with dementia and are facilitating greater collaboration with them. Some have representatives with Alzheimer’s serving on their Boards, consulting on educational materials and policy development, and participating in strategic planning discussion forums.

Volume 11, Number 1: August – October, 2005 A Call to Action Towards Greater Involvement with the Alzheimer’s Association Around the world, in ever–growing numbers, people with Alzheimer’s and related dementias are seeking greater inclusion in the work and mission of their respective national Alzheimer’s organizations. While many international organizations have long provided invaluable support for caregivers and research and program development, direct involvement with people with dementia has been limited. With medical advances in the diagnosis and treatment of Alzheimer’s, more people with only mild symptoms are being diagnosed earlier on in the course of the disease. Although they may experience problems in memory and other areas of thinking, many mildly affected individuals still have significant abilities and insights that can be of great value to professionals and organizations working in the field.

In some countries, national conferences are held speciﬁcally for people with dementia (with many family members and professionals also attending), and greater networking forums for people with dementia are being developed through the internet or regularly scheduled regional meetings. In the US, a movement is now underway to establish better communication and collaboration between people with Alzheimer’s and our own National Alzheimer’s Association. Many Association chapters across the country can be credited for

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their outreach to and support of people with dementia. Some regions provide support groups or other programs to address the needs of people with more mild symptoms. Other chapters have very eﬀective advocacy programs and try to involve people with dementia in important fundraising, media awareness, or public policy campaigns. Although these are valuable collaborations, a Call to Action is underway to urge more involvement by people with dementia in the work of the National Alzheimer’s Association and its regional chapters.

Dear Mr. Johns and Mr.Varnes, We are persons who have been diagnosed with Alzheimer’s disease (by "Alzheimer's" throughout, we include related dementias). Historically we are marginalized by and in our culture. Instead, we should have a voice in public policy, research, programs, and services affecting us and our families. Although persons with Alzheimer's in other countries (namely Canada, the UK, and Australia) have been encouraged by their respective Alzheimer’s organizations to play a growing role in their national and local organizations, we have not been included in setting priorities and implementing the work of our Alzheimer’s Association. Under the auspices of the Association, some of us have testified in public hearings at the national and state levels and have contributed to advocacy and educational programs, but we should have more active roles and greater collaboration with the national office and the chapters. We have a unique perspective and understanding of our own needs. Many of us have the time, energy, ability, and the commitment to make a powerful difference in our own lives, the lives of others, and the mission of the Association.

Jenny Knauss, a Chicago resident with Alzheimer’s (read more about Jenny on page 7), and her husband, Don Moyer, have embarked on an initiative to build stronger bridges between people with Alzheimer’s and the Association. The following letter has been drafted to Mr. Harry Johns, the new CEO of the Alzheimer’s Association and Larry Barnes, Chairman of the Board of Directors. If you would like to support Jenny and Don in this eﬀort, see the enclosed signature sheet (note that one side is for people with dementia; the other side for family and friends). It can be signed and returned to the address on the letterhead. You can also sign the letter on Jenny and Don’s web site at http://alzsh.net.

So that together we can achieve the goals of our "Call for Action" we

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respectfully urge you, the Board, and the staﬀ to implement these action steps:

Alzheimer's reduce their excess disability and achieve their highest maximum potential, and to help make early diagnosis routine rather than rare no later than January 1, 2007.

1) Create a senior level position - with support staﬀ - to facilitate greater involvement of Americans with Alzheimer's in the work of the Association (especially in implementing these action steps), both nationally, and locally through its chapter network, no later than April 1, 2006. 2. Conduct a comprehensive needs assessment of Americans with Alzheimer's through individual interviews and focus groups no later than October 1, 2006.

6. Create ways and means for persons living with Alzheimer's to initiate, inform, and jury projects which increase our opportunities for mental and physical activity and address our psychosocial needs - such as assistive technologies and other products that minimize the eﬀects of disability associated with Alzheimer's - no later than April 1, 2006.

3. Based on the needs identiﬁed in this assessment, develop a strategic plan for implementing a “Living with Alzheimer's” program modeled after existing programs in Canada and the UK no later than January 1, 2007.

7. Advocate for substantial new public and private funding for projects and products which increase our opportunities for mental and physical activity and address our psychosocial needs no later than April 1, 2006.

4. Reserve and ﬁll two positions on the national Board of Directors for persons diagnosed to have Alzheimer's, and request the same or greater level of participation by persons with Alzheimer's among all local chapters, no later than January 1, 2007.

8. Promote widespread use of projects and products which increase our opportunities for mental and physical activity and address our psychosocial needs no later than April 1, 2007. 9. Require all chapters to create core services for persons with Alzheimer's including services which address needs unique to the various stages of Alzheimer’s disease and the unique needs of individuals living with other forms of dementia no later than January 1, 2008.

5. Work with persons having Alzheimer's to create a public awareness campaign to reduce the stigma associated with Alzheimer's, to promote involvement by individuals and communities to help Americans with

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distress. Although both chapters are up and running, given the level of destruction and degree of needs, their funds are low and stretched very thin. The National oﬃce requests that any contributions for these two chapters be sent to your local chapter of the Alzheimer’s Association earmarked for the Louisiana and Mississippi Chapters. Call 800-272-3900 to ﬁnd your local chapter, or donate online at www.alz.org

10. Communicate at least quarterly with Americans with Alzheimer's on progress toward these action steps. These action steps address shared concerns of many persons living with Alzheimer's, and we hope that you share these concerns as well. Together we can address these needs, strengthen the Alzheimer’s Association, and make a positive diﬀerence for the increasing number of Americans living with Alzheimer's. We look forward to your reply to the organizers of this grassroots eﬀort, Alzheimer’s Spoken Here, as well as in public announcements.

Deepest gratitude to Alzheimer Society of Canada for their gracious commitment to this eﬀort. Alzheimer’s Services of the Capitol Area, Baton Rouge, Louisiana (www.alzbr.org) is a member organization of the Alzheimer’s Foundation of America. Alzheimer’s Services provides education, support, and direct services to families in the Baton Rouge region. They have received a dramatic increase in calls from regional and displaced families seeking help with respite, supplies, and other needs.

Best regards, Jenny Knauss and co-signers

Help for Alzheimer Families Affected by Katrina As this issue of Perspectives goes to press, many families are still reeling from the devastating effects of Hurricane Katrina. The National Alzheimer’s Association has chapters in Louisiana and Mississippi that were hit hard during this disaster. Displaced persons with dementia and their families need help during this time and the Louisiana and Mississippi chapters have identified priority areas for attention. These include assisting emergency shelters, residential living facilities, and specific families in

Questions and Answers Q. I was diagnosed with Alzheimer’s two years ago and I continue to live alone. My son is concerned about this. He thinks I need help, but I think I’m doing just ﬁne. How can I convince him that I’m OK?

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A. Sit down with your son and go through the following list of questions. Although you may have diﬀering opinions about the answers, try to trust your son if he points out problems he has observed. It is often diﬃcult for adult children to talk with parents about these concerns. Chances are, he is concerned about your safety and well-being and has your best interests in mind. These questions also apply to people with memory problems who are home alone during the day while a care partner is working or out of the home.

Are you able to maintain your checkbook, write out checks, and pay your bills? Have you discovered any overdue bills or accidentally thrown any away? Can you calculate the correct change in purchasing transactions at stores? Have you given any money to fraudulent or exploitive phone or mail solicitors? Medications Are you able to keep track of when to take your medications? Are you forgetting to take them or taking them too frequently? Are there expired medications in your home or medications that have not been reﬁlled as needed?

Food preparation Are you able to make a list of what you need at the store and do your own grocery shopping? Can you make well-balanced meals on your own? Have you burnt pots or cooking items on the stove? Is there food that is too old or that has gone bad in your refrigerator that could be harmful to eat? Do you drink enough ﬂuids? (Dehydration can worsen symptoms of memory loss and confusion).

Hygiene Are you doing your laundry as needed? Are you bathing or showering safely and adequately? (Bathrooms are a common place for falls or other accidents). Are you experiencing any medical conditions such as skin rashes or urinary tract infections that could indicate diﬃculty maintaining good hygiene? Safety Issues Do you remember to lock your doors at night before going to bed? If there is an emergency in your home (a ﬁre or a personal injury, for example) do you know what number to call? If you are a smoker, do you remember to extinguish cigarettes? Are there any burn marks or

Finances

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holes in your furniture upholstery or clothing?

Was it possible that what I accepted as aging forgetfulness – together with other peculiar changes in and or lessening of abilities to speak, to think, to read, and to be the “real me” – was I, am I, in the situation that I saw and deeply felt to be hopeless? Such were my thoughts. Then I began to uncover some other thoughts that deﬁnitely helped me in a major way – thoughts I’d like to share.

Home maintenance Are you able to coordinate any repairs needed in your home (calling the plumber, for example)? Is your home relatively free of excess clutter that can accumulate and create safety problems? Can you clean the house and manage equipment (such as a vacuum) as needed?

First, if I write of myself, it is mandatory that I ﬁrst mention that my family is life’s greatest gift to me - the greatest source of my strength and joy and meaning. For them, I want to be both alive and as happy and capable a person as I can be. And I am grateful that they force this motivation in me.

This may seem like an intimidating set of questions, but if your son has observed problems in any of these areas, it is very important to be open to the discussion of getting some help in the home. Accepting assistance does not mean having to give up control of your life. Usually help in the home or with some aspects of daily living increases your independence by allowing you to live on your own or in your own home for a longer period of time. Call your local chapter of the Alzheimer’s Association for referrals and partner with your son so you can maintain your independence and functioning.

And now, for what I think is the most important aspect of this message: I know that my life’s work - as family member, as university professor, as clinical psychologist, as a person in the world – in all of these areas my “successes'', my rewards, my moments of self-satisfaction have been involved with times of being of help to other people – friends, my children, my students, my patients – and now, I hope, people I have yet to meet – to realize that even when there are ways in which we are diminished – to seek out that which is still ours to do – the things that give life meaning and that make us feel that “we are worth our salt.” I cannot make ﬂowers grow with much success.

MAILBOX Dear Perspectives Readers, Recently, I sat – or more precisely – I dropped myself into an armchair in my bedroom. Some tears were in my eyes – only a few tears in relation to the pain and distress I was feeling. My distress surged with heavy thoughts of questioning “the reality.”

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I cannot master diﬃcult mathematic problems. I’m really not a notably admirable cook. The listing of my cannots is not the subject. What is important is that I can feel that I accomplish something with my “cans.” For example, what is making the present moment more positive for me is the hope that as you read these words, you will remember some of your “of course I still can” abilities and that they lead you to greater appreciation of who you continue to be. Your desires, abilities – these are the important lists for you. You and I don’t have to be as strong as we wish or even as we once were. At this moment I know that I feel so much better for the trying! I feel “I am me” in the trying.

Alzheimer’s disease in its Phase 3 trial of MPC-7869 (Flurizan). More than 120 sites across the US are participating in this 12-month study that will be evaluating the ability of the medication to slow declines in thinking and functioning in people with early-stage Alzheimer’s. The medication is derived from a non-steroidal anti-inflammatory drug called flurbiprofin, and is thought to reduce the levels of amyloid protein in the brain. Amyloid protein forms damaging plaques in the brains of people with Alzheimer’s, and many scientists believe that preventing plaque formation is key to preventing or treating the disease. Earlier Phase 2 studies of MPC-7869 (Flurizan) raised the possibility that people with mild Alzheimer’s who received 800 mg. of the drug twice daily experienced a slower rate of decline than those on placebo. This larger clinical trial is now underway to reproduce those encouraging results in a larger sample of study participants.

I recognize that I’ve had the need within myself to share “I’ve been hurt, but it’s OK.” I feel some of the hurt evaporate and disappear as I consider the possibility that as I reach out to you, I might help you in your supporting your feelings of being the real you as you reach out with your strengths and interests and your “self makers” and gifts to the world. And I wish you good fortune.

Clinical Trial of FK962 Alzheimer’s disease reduces the levels of important neurotransmitters in the brain. Neurotransmitters are chemicals that carry information between brain cells and help to maintain memory and other thinking functions. FK962 is an experimental drug aimed at increasing levels of a certain hormone, somatostatin which is produced throughout the body and serves as a neurotransmitter in the brain.

Idel B. McLanathan San Antonio, Texas

Research Updates MPC-7869 (Flurizan) Myriad Pharmaceuticals, Inc., has begun enrolling up to 1600 people with mild

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Laboratory animal research has shown that reduced somatostatin may cause memory problems, and a small study in humans suggested that increasing levels of the hormone could improve memory in people with Alzheimer’s.

trials before researchers can feel conﬁdent of the drug’s beneﬁts. In the meantime, it cannot hurt to keep your cholesterol in check and to talk with your doctor about possible treatment if your levels are too high.

Astellas Pharma U.S. is launching a clinical trial of FK962, a compound that triggers the release of somatostatin in regions of the brain important for learning and memory. The study will enroll 510 participants with Alzheimer’s in sites across the U.S. and Canada. For more information on the sites for this study, call Astellas Medical Information Department at 800-727-7003.

Facing Alzheimer’s Disease: Resilience and Empowerment After a Diagnosis In July, 2005, the National Alzheimer’s Association held its annual education conference in Chicago. A highlight was a plenary session (titled above) facilitated by Darby Morhardt, LCSW of Northwestern University’s Alzheimer’s Disease Center and Robyn Yale, LCSW, a pioneer in the ﬁeld of early-stage support groups. The plenary showcased people with dementia who are engaged in innovative Chicago-based programs, and the relationships that have formed or been strengthened out of this involvement. It cast a bright light on what, in Ms. Yale’s words, are ”the possibilities that become available when the barriers of stigma and stereotyping are removed.”

Beneﬁts of Lowering Cholesterol Researchers at Sun Health Research Institute in Sun City, Arizona conducted a small study to determine the beneﬁts of atorvastatin, a cholesterol-lowering drug, in people with Alzheimer’s. A number of animal and human studies have suggested a relationship between cholesterol and the amyloid protein associated with Alzheimer’s. Researchers have been examining whether reducing cholesterol levels can help to prevent or reduce symptoms of Alzheimer’s. In this small preliminary study, researchers found that daily intake of 80mg of atorvastatin reduces cholesterol levels and may stabilize memory and thinking abilities in people with mild-moderate Alzheimer’s for a limited period of time. This small study will need to be replicated in much larger

Sarah Cole and Jenny Knauss discussed their experiences in the award-winning Buddy Program developed by Ms. Morhardt. First year medical students or researchers at Northwestern University are paired with a person with early-stage Alzheimer’s. The pair socializes at least once a month and students learn about the person behind

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the symptoms. Sarah and Jenny meet regularly for a variety of cultural events. Sarah shared that she was initially scared about meeting someone with Alzheimer’s, but the fear quickly dissolved: “It’s a rich relationship. Alzheimer’s brought us together, but we really don’t spend much time talking about it or thinking about it.” She reﬂected how her ideas about people with Alzheimer’s have completely changed since participating in the Buddy Program.

The Culture Bus was the third program that was discussed. It was initiated by members of the support group who wanted to have cultural outings together. The Council for Jewish Elderly manages this program and offers a series of six half-day outings for people with dementia scheduled each Fall and Spring. Participant Sydnee Conway discussed the friendships made during these outings and stated, “The Culture Bus really gives us a lot more to do.” Spouses also benefit knowing that their loved one is safe and engaged in an interesting activity. The final panelists were Richard Wojcicki and 13 year-old Jose Torres. The pair met through the Chicagoland Memory Bridge Initiative, an educational program developed by educator Michael Verde (www.memorybridge.org). Young students learn about the medical, social, and personal aspects of Alzheimer’s and meet with a person with dementia. “The lad is remarkable – way beyond his years” commented Richard of his young friend. Jose spoke of the importance of his generation learning more about people with Alzheimer’s and the disease so they can help to find a cure. “They’re not really that different from us,” he told the audience. “They just forget more often.”

Les and Barbara Dennis discussed their experiences in an early-stage support group that meets at Northwestern University. Les meets with peers who have dementia while Barbara meets with care partners in a separate group. Both discussed the invaluable relationships with others that had formed out of their support groups, as well as the ways in which their own marital relationship was enhanced by better understanding how to cope with Alzheimer’s symptoms. Les stated, “We all get down – but we get up when we’re with others.”

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share their own perspectives on what quality of life means for them. You can read others’ reﬂections or add your own online at http://www.stroudsymposia.org.

Volume 11, Number 2: November - January 2006 Thoughts on Maintaining Quality of Life The phrase “quality of life” can be heard throughout conversations ranging from healthcare and medicine to the status of our neighborhoods, communities, and global well-being. Essentially, when we discuss quality of life, we are referring to the degree of enjoyment or satisfaction experienced in daily living as well as the quality of one’s overall mental and physical health. The ways in which good quality of life is achieved will vary from person to person and needs to take into account the people, activity, or experiences that give each of us the most pleasure.

The issue of quality of life is also discussed in support groups for people with Alzheimer’s or a related disorder. Topics often include ways to cope or continue living meaningfully in the face of memory loss. Members of one support group facilitated by Darby Morhardt, LCSW and Vanessa Bradden, MS, at Northwestern University’s Alzheimer’s Disease Center in Chicago, discussed ideas for enhancing quality of life. The group members came up with the following top ten ideas (highlighted in blue). Do you agree with their ideas? As you read their suggestions, think about what kinds of things contribute to your own quality of life.

For the past six years at the annual conference of Alzheimer’s Disease International (ADI), there has been a series of discussions on quality of life and dementia called the Stroud Series Symposia. People with dementia, their care partners, and professionals from around the world have come together to discuss what improves or reduces quality of life. Participants have discussed the importance of education, touch, love, communication, humor, choice, spirituality and trust as key elements in quality of life for people with dementia and their care partners. A web site of the Stroud Series Symposia has been formed to encourage people to

“Maintain as much control for as long as possible.” Everyone wants to feel that they have some influence in their daily lives. Many people find a sense of control in being able to make decisions or in having choices. Although Alzheimer’s may have some impact on your feelings of control, think about the ways in which you do have some influence or decision-making ability in your daily life.

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“Maintain as familiar an environment, routine, and sense of organization as possible.”

positive aspects to life that are helpful to acknowledge. Find things to be grateful for each day and talk about them with others. What kinds of things give you hope and help you to feel positive?

Many people discuss strategies for keeping track of things and staying organized. Putting things away in the same place, maintaining a calendar, or keeping to a familiar route while walking are all examples of ways people adapt to memory loss and maintain quality of life.

“Make sure you have support.” For most people, relationships with caring friends and family are essential to quality of life. Some appreciate a peer support group where they can give and receive support from others “in the same boat.” Who provides support to you when you need it?

“Remain active and involved.” One support group member stated, “There are lots of people with early-stage Alzheimer’s and there are lots of things which we can do to live active and useful lives with Alzheimer’s. I have lost some cognitive ability, but I have lots of ability left and I can work around the things which I can’t do. That’s one of the things that activity does; one learns by ﬁguring out how to work around a problem, just like learning how to avoid using a strained muscle.”

“Accept your limitations.” One support group member says, “Recognize your weaknesses and make the most of your strengths.” It is important to realize that you might not be able to do things in exactly the same way that you used to and being patient with yourself is important to quality of life. “Don’t be afraid to try something new.” The onset of Alzheimer’s does not mean that you can’t have new experiences or discoveries. Think of new things you might want to do, or places you want to see. Mental stimulation is important.

“Take safety precautions.” Sometimes it is helpful to get assistance or be cautious in areas that pose risk such as cooking or taking long walks alone. It can help to increase feelings of security and conﬁdence when we take precautions.

“Take care of yourself physically and mentally.” Personal health is important for everyone. Eating well, getting enough sleep, and staying physically active can improve overall quality of life.

“Remain positive.” Although this may seem like it’s easier said than done, there are always

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“Find ways to modify prevailing attitudes about Alzheimer’s disease and advocate for public policy change.”

Dear Nancy, You are not alone! This is a common problem for families, and there are many diﬀerent approaches to the situation. To start with, my colleague, Cecily Jenkins, took your concern to the weekly support group that we co-facilitate for people with dementia as I thought the participants would have helpful insights for you. Although persons in the support group are obviously willing to discuss their condition, they appreciated your dilemma and had the following advice and perspectives:

Some find that getting involved with their local Alzheimer’s organizations is a powerful way to feel involved and influential. More and more people are showing the public that it is very possible to have Alzheimer’s and also have a good quality of life. If you make a list of the activities, people, attitudes, and experiences that contribute to your quality of life, you may find it to be a helpful guide for moving forward in the face of memory loss.

● Has the doctor talked with your mother and been clear (and hopefully caring) with her about her diagnosis? Sometimes doctors skirt around the issue and that can also make the person with dementia avoid discussion. It’s important to instill a sense of hope in any discussion of dementia. It’s not all bad news.

Reference: Morhardt, D. “Top 10 ideas for enhancing quality of life by diagnosed individuals and families living with Alzheimer’s disease and related dementias.” Alzheimer’s Care Quarterly 2004; 5(2) 103-107.

MAILBOX Dear Lisa, I enjoyed your newsletter, but my mother is not willing to read it or talk about her dementia, so I’m canceling the subscription. Do you have any others with experiences like this or ideas for me?

● Perhaps your mother doesn’t talk with you about her dementia because she is trying to protect you from having to experience the disease with her.

Thank you, Nancy Sleboda North Riverside, Illinois

● What do you want to talk with your mother about? Is a conversation about dementia more for your own needs or for your mother’s?

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● It’s a change in roles for both of you. The daughter is becoming the parent and that’s hard. Emphasize to your mother that as her daughter, you are just concerned about her overall well-being. ● It may be OK just to leave your mom alone for awhile. I would add to this excellent feedback that sometimes the word “dementia” feels threatening and a person may be more willing to talk about “changes in memory”. Has your mother always been a private person, or is she usually more open with you? Give dementia a break and focus on sharing feelings about other topics so you maintain communication and trust. However, if she has always been private, this may not change. Some people with dementia also report that they don’t want to talk with family members about their symptoms for fear that family will become overprotective. This is a delicate balance for family members who may be concerned for good reason, but also may have the door shut when they try to help.

Dear Readers, You may have noticed that Perspectives has taken on a new look! Now into its eleventh year, it seemed time to advance into the modern world and take advantage of colored ink and crisp fresh paper! As always, I welcome your feedback about the format and content of the newsletter, as well as your essays, letters, poetry, or other written contributions.

New Resources What To Do When The Doctor Says It’s Early-Stage Alzheimer’s by Todd E. Feinberg, M.D. & Winnie Yu. Fair Winds Press, 2005. Although there are numerous excellent guide books for caregivers, there are very few resources written for people with dementia. What To Do When The Doctor Says It’s Early-Stage Alzheimer’s is an important addition to this limited literature and could be useful for both those diagnosed and their care partners.

The bottom line is that your mother is very lucky to have such a caring daughter. Make sure to take care of yourself as you try to care for her. Perhaps the Alzheimer’s Association can provide information on caregiver support groups or other services for you in your region.

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Chapters 1-4 of the book are devoted to an overview of brain anatomy, the cause of Alzheimer’s, risk factors for the disease, how it is diagnosed, and descriptions of its stages. Chapter 5 addresses some of the more practical aspects of managing the disease. The authors discuss some of the emotional and day-to-day concerns facing people with dementia and their care partners and provide general advice for both. Chapters 6 and 7 summarize ways to maintain good physical health through nutrition, exercise, activity, and good medical care while chapters 8-10 review the importance of support and give an overview of some issues in legal and ﬁnancial planning. The book concludes with four vignettes of people with dementia and their care partners who share their personal experiences.

in tone and provide sound advice and useful, practical information. At 282 pages, this book could be overwhelming to some and readers may choose to use it as a reference guide, reading a chapter or section as needed. A detailed appendix provides information about helpful organizations and resources.

Different Minds –Living With Alzheimer’s Disease by Lorna Drew and Leo C. Ferrari. Goose Lane Editions, 2005. In this short, engaging book by two Canadians, a husband, Leo, and his wife, Lorna, share their perspectives about life with Alzheimer’s. In an interactive format that alternates between Leo’s and Lorna’s writings, they each describe experiences around Leo’s first signs of memory loss, his evaluation and ultimate diagnosis of Alzheimer’s, their feelings about dealing with his symptoms, and the ways they find information, support, and community in the face of his ever-changing circumstances. The sparseness of their words brings an elegance and poignancy to each essay and both have the capacity to cover a realm of emotions and issues with candor, humility, and glimpses of humor.

Although the book’s front cover advertises “information you need to stay healthy and prevent progression” and its back cover boldly states “you can slow the progression of Alzheimer’s”, in fact there is currently no way to prevent the progression of Alzheimer’s. For people who do not respond to medication or other lifestyle modiﬁcations, there is no slowing of the process, either. Although hope is essential, and scientiﬁc breakthroughs are ongoing and encouraging, such comments can be misleading to a potential reader. Fortunately the contents of the book are more cautious

As with most couples facing Alzheimer’s, things do not always go

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smoothly and the authors’ honest reﬂections are refreshing. The reader can feel empathy for both viewpoints and appreciative for the capacity and courage this couple has in trying to face Alzheimer’s together. A small format with 112 pages, this book is a little gem that sparkles with humanity and is a worthwhile read for anyone whose life is touched by Alzheimer’s.

A New Study of Ketasyn Ketasyn is a man-made version of glucose, a substance found naturally in our bodies. Glucose serves as a kind of fuel for the brain and body and is necessary for normal functioning. Some scientiﬁc evidence has shown that the body’s ability to process and make use of glucose is altered with Alzheimer’s disease. Parts of the brain may not be adequately receiving the beneﬁt of glucose and this could have an impact on memory and other areas of thinking. Ketasyn is designed to boost the processing of glucose in the areas of the brain most responsible for memory. The experimental medication does not aim to slow the progression of Alzheimer’s, but researchers hope that it may help improve short-term memory and attention in people with the disease. A preliminary study of the drug was promising enough to warrant the second trial that is now underway. Participants can stay on their other Alzheimer's medications and still take part in this study.

Research Updates Alzhemed Update In July, 2005, the pharmaceutical company Neurochem completed recruitment for its latest trial of a promising new drug called Alzhemed. This medication aims to prevent beta amyloid proteins from clumping together into the sticky plaques that form in the brains of people with Alzheimer’s. Many scientists believe that the beta amyloid protein is one of the main causes of brain cell damage for people with Alzheimer’s. Earlier studies of Alzhemed indicated that participants who received medication during the previous clinical trial declined more slowly than those who received a placebo. This current trial now underway aims to replicate these ﬁndings and provide basis for the Federal Drug Administration (FDA) to approve the medication for treatment of Alzheimer’s in the coming years. The current study results won’t be made public until sometime next year, so we will keep you as updated as possible about this hopeful new medication.

Intravenous Immunoglobulin Last Spring, at the meeting of the American Academy of Neurology in Miami, researchers reported on some exciting preliminary ﬁndings from a study of intravenous immunoglobulin (IVIg) in seven people with Alzheimer’s. IVIg is a substance that contains large amounts of antibodies (proteins in our bodies that help to ﬁght

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infection and protect us from disease). IVIg has been found to latch onto beta amyloid proteins in the blood and may help to keep those proteins from being dangerously deposited in the brain. Study participants received injections of varying doses of IVIg and after six months of treatment, six of the participants had improved on measures of thinking ability and one had remained stable. The researchers caution that this is a very small study and would need to be replicated in much larger numbers over a longer period of time. These preliminary ﬁndings do add to the interest, however, in developing some kind of vaccine or immune therapy targeted to limiting the damaging eﬀects of beta amyloid protein.

the statement of Dr. Bernard Reisman, a retired professor who now has Alzheimer’s, to the Bipartisan Congressional Task Force on Alzheimer’s Disease during the Spring, 2005, Alzheimer’s Advocacy days in Washington, DC. Mr. Chairman and members of the Bipartisan Congressional Task Force on Alzheimer’s Disease: My name is Bernard Reisman. My wife Elaine and I are honored to be here today on behalf of the millions of families like ours who are coping with Alzheimer's disease. I sit before you today as a 78 year-old man with Alzheimer's disease, as a proud World War II veteran and as a concerned husband, father and grandfather. I am also here to advocate for increased Alzheimer's research funding because I am hoping that science can put an end to this terrible disease. Perhaps too late for me, but certainly not too late for the millions of Americans who face this disease in the future. An annual billion-dollar investment in Alzheimer’s research is essential to winning this battle.

Speaking Out: A Statement to Congress from an Alzheimer’s Advocate Editor’s note: – Each year the National Alzheimer’s Association mobilizes staﬀ, professionals from around the country, and most importantly, people with Alzheimer’s and their families, to make the journey to Congress to advocate for increased awareness and funding of Alzheimer’s research and services. Congress allocates a limited amount of funding to Alzheimer’s research and this advocacy eﬀort goes a long way in keeping Congress aware of the urgent need for more attention to preventing, treating, and curing this disease. The following is a transcription of

In my professional life, I was a professor of Jewish studies at Brandeis University for 37 years. My PhD is from the Florence Heller School for Advanced Studies in Social Welfare at Brandeis University. My academic career at Brandeis included founding the Hornstein Program in Jewish Communal Service as well as teaching

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small group theory and contemporary Jewish issues. I have published numerous books and articles, and lectured and conducted research in Jewish communities throughout the world. Although I enjoyed other aspects of my work, interacting with students was the most enjoyable part of my time at the University. It was always important to me to have good relationships with my students and to help them achieve in both academics and life.

change. They told my wife I was asking them to complete the same project several times and needing constant reminders about regular tasks. It wasn’t until ﬁve years after my initial memory problems that my wife and I began to pursue a diagnosis. Though my wife and I knew something was wrong, we were not convinced that medical intervention was necessary until my children got involved. My son-in-law is a neurologist and actively encouraged us to seek professional help. My initial diagnosis was one of Mild Cognitive Impairment and I was prescribed Aricept in the hope that it might help slow the progression of the disease. Now, my doctor believes I have advanced into Alzheimer’s disease.

When the diagnosis of Alzheimer's led to my retirement in 1999, I was very sad to give up teaching. My career was very important to me and I was prepared to work many more years. After I retired, I was determined to remain an active member of the teaching community. I developed the Brandeis Adult Learning Institute which is a program for people who have retired and want to continue learning. My wife, Elaine, still leads classes regularly for the program.

To learn more about Alzheimer’s my wife and I became active in the early stage support group led by the Massachusetts chapter of the Alzheimer's Association. These bi-monthly get-togethers allow me to express my feelings and frustrations to my peers who are also struggling with Alzheimer's. I am able to take a leadership role by welcoming people and helping them feel comfortable in the group. I also participate in a day program where I lead a discussion group of my peers. Having the opportunity to still use my leadership skills is a boost to my ego as knowing that I have memory problems is often troubling to me.

My wife ﬁrst noticed that I was having problems with my memory about eleven years ago. I had always been very independent and well-prepared for my job, but as the symptoms developed I began to become more dependent on my wife to remind me of appointments and tasks. I would leave for the day on trips only to return that evening very confused about where I had been. My secretaries at work also began to notice a

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legislature about the destruction of Alzheimer’s disease and I am testifying here today to urge you to continue the investment in Alzheimer’s research. We know that scientists are on the verge of finding ways to prevent and treat Alzheimer's and that the help and funding our government provides today may save future generations from this terrible thief that steals memories, disrupts careers and affects millions of families. If the research can proceed fast enough, there may be something that will make a difference for me, but I pray that the discoveries will come in time for the next generation. I desperately hope we can find a way to spare my children and grandchildren and others from this devastating disease. We are in a race against time and if we don’t find the answers soon, Alzheimer’s will be an epidemic.

Since my diagnosis, I have participated in various research studies. I believe it is important that I remain proactive despite my diagnosis. I have been enrolled in studies on acupuncture, Vitamin B and Folic Acid, pain and cognition, vision and cognition, herbal supplements, and MRI studies. I have participated in the Health Outreach Project for the Elderly and a study on music therapy. My family is also involved in clinical studies surrounding Alzheimer’s disease. My brother and my children have participated in a family research study as well. Because my father and all four of his sisters had some form of dementia we are concerned that we may be passing the disease on to our children. I know that participating in research is one of the only ways that I can prevent this from happening. There is so much hope for a future without Alzheimer’s disease.

On behalf of my family and the millions of other families just like mine who couldn't be here today, thank you for your leadership and commitment to our cause. I appreciate your time and consideration and would be happy to answer any questions you may have.

Volume 11, Number 3: February-April, 2006 Lost, Stolen, or Strayed

While I am still able, I want to do whatever I can to speak out about Alzheimer’s disease. I have spoken many times before the Massachusetts

by Brian McNaughton Brian and his wife, Jean, live in Invercargill, New Zealand. Brian has vascular dementia,

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which is usually caused by a series of small strokes in the brain.

during the blitz and the sparkle of life and hope in the eyes of a terminal cancer patient. All of these and so many more instances must declare that stigma of a dreaded and much maligned condition. I had vascular dementia and this diagnosis would forever change my life and the lives of all who I loved and cared for. The only upside I could see was that I had progressed from youngest to eldest of the family in thirty seconds.

Contrary to popular expectations, I am still a reasonable, functioning 68 year-old. I eat and sleep unaided, make arguably intelligent conversation, have most of my oriﬁces unhampered by pads, bags, and bibs and am still very eﬃcient at seeing the ridiculous in the words and actions of others (never of myself). I like to believe I am free to pursue most activities though it disturbs me that even while I am composing this masterpiece, Jean has the builders erecting a high gate to completely secure this property we call home. Her protests that its sole purpose is to keep the southerly gales from our front door are about as believable as my ability to memorize the latest joke sent to me by email.

I would be deceiving you to say that our world collapsed at the announcement of this condition. Yes, my professional life as a pharmacist ceased at once (and me only 62 years old), but the rather foolish expectations of a life of continuing leisure buoyed us both for some weeks. With the searching for knowledge about a condition completely unknown to us both came the fear of the future and an even greater fear of the unknown. Lost and stolen? Certainly. Status, position, conﬁdence, and understanding, all placed out of reach and out of sight. Gone. And no one even suggested that it may be worth hunting in the rubble to ﬁnd the odd link that have the brain of a 76 year-old and it is aging rapidly!” Thus began my plunge into the fascinating world of those of us that have to continue their lives with the hope and life are never lost. And so it proved to be for Jean and me.

You need to understand that in July, 2000, while inspecting the images of an MRI scan with Jean and my neurologist, we were to hear this proclamation: “You might open up a new life in which hope and satisfaction might walk again.” Dementia was the complete antithesis of life and hope, so we were lead to believe. The human spirit is a wonderful concept. The epic journeys of men like Scot and Shackleton, the unbelievable courage of Londoners

There is a wonderful poem by A.A. Milne in which Christopher Robin asks

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passersby what they were going to do “this ﬁne day”, only to receive the expected roles serious people always play. Then he asks a stray puppy: “Where are you going to this ﬁne day?” I said to the puppy as he went by. “Up to the hills to romp and play.” “I’ll come with you puppy,” said I. If a puppy had the sense to stray up into the hills and leave the somber expected roles behind, then so could Jean and I. And we have. Of course not every day is a day for romp and play. Never the less the anticipation of Jean opening that gate is even more inviting than yearnings for times past.

seat. Wanting to express my thoughts and demystify this condition has forged new skills and given me a sense of achievement. It isn’t getting easier but I can begin to write with a conﬁdence I have never had before, even if it makes little rhyme or reason to others. What am I trying to communicate? If we passively shut up shop in the early stages of our disease and just concentrate on what a horrible card fate has dealt us, then we deserve to be miserable and should be ashamed of making the lives of those who love us so stressful. Instead, look for those opportunities to stray from the beaten path. Leave your dark rooms and open your hearts if you have trouble opening your minds. Hard at ﬁrst I must admit, but easier the harder you try.

The sun only shines as it pleases and it pleases me greatly to be where I can cast oﬀ much of the baggage dementia asks me to bring along, even for just a few hours. Baggage such as loneliness, loss of esteem, fear of rapid downward progress, acceptance that this moment is the best there will ever be and it gets worse from now on. And I have found a strange and exciting fact. The more often I stray from the expected, the lighter my load becomes. Jean postulates that we can forge new pathways in our brains if only we try hard enough and expect to succeed. One way to do this is perhaps to consciously stray from the known way into unknown areas.

I took a phone call yesterday afternoon. A young lady in a car sales firm asked me if Jean and I would care to go to a function at 6:00 pm that night. Yes! We got into our finery and turned up as invited. No function, no guests, nothing. The problem? I had the message wrong as usual. Fifteen minutes later, we were dining together in a pleasant restaurant and thoroughly enjoying ourselves. Off the old pathways, away from the expected roles and we were having a ball.

My education was centered around the sciences, and language took a very back

I would not be so conceited as to put myself up as an example to many. But I can tell you that when the sun does

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shine, I endeavor to make each spark so real that I can hang on forever. And forever is as long as I can hold on for. What is lost or stolen is lost and stolen. What you are left with is just that. Grasp it with all your heart and have another day in the life of YOU!

is also made possible through the generosity of the Shiley-Marcos Alzheimer’s Disease Research Center. I welcome any feedback you have about this new look or about the content of the newsletter. Best regards, Lisa Snyder

MAILBOX Dear Readers, This issue of Perspectives ushers in two new and exciting changes. For the past ten years, Perspectives has been sustained by your subscription fee that covers production and mailing costs. Beginning with this current issue, the Shiley-Marcos Alzheimer’s Disease Research Center at the University of California, San Diego, has agreed to provide Perspectives as a free email newsletter. Subscribers now have the option of paying to receive the printed newsletter by surface mail, or receiving the newsletter by email for free. This email option makes Perspectives available to more people and is a less costly option for many of our readers.

New Resource The National Institute on Aging Alzheimer’s Disease Education and Referral (ADEAR) has recently published their 2004-2005 Progress Report on Alzheimer’s Disease. This extensive and beautifully illustrated booklet provides summaries of some of the most important federally funded Alzheimer’s research advances from the last two years. It also provides an update on research trends in preventing, treating, and ultimately, in curing Alzheimer’s and related disorders. ADEAR provides a wealth of resources and information for both families and professionals concerned about Alzheimer’s and related disorders and is well worth investigating by phone or through the internet.

I will ﬁnish out all existing surface mail subscriptions and when your subscription has expired, I will renew it based on your choice of free email or paid surface mail. Please feel free to contact me with any questions or concerns about this change.

Program Spotlight In a few regions around the world special “cafes” are being developed where people with Alzheimer’s and their families can socialize with one another in a fun and supportive

The second change is evident in the newsletter’s colorful new format. This

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environment. Inspired by a program that started years ago in the Netherlands, the Colorado Chapter of the Alzheimer’s Association and HealthONE Alliance in Denver, Colorado, have developed their own variation on this concept and call it “Memory Café.”

Memory Café rotates to diﬀerent sites throughout the greater Denver region to provide easier access to as many families as possible.

Questions and Answers Q. I get frustrated when I try to read novels or watch movies because I can’t always keep track of the plot or the characters. Is there any way that I can stay involved with these activities despite my memory loss? A. Many people ﬁnd that reading short stories or magazine articles can be more rewarding. If you can ﬁnish the article or story in one sitting, you may be more likely to be able to keep track of the content. If you have access to the internet, you might want to explore Amazon’s new Short Stories section. This internet book-seller has started selling short stories from popular authors that you can download from your computer. Each story averages about seven pages and costs only 49 cents. You can review their selections and place your order at http://www.Amazon.com.

Memory Café began in October, 2003, and is oﬀered quarterly. The Café provides socialization and an evening of music, dancing, and conversation for people with early-stage Alzheimer’s, their families, care partners, and friends. The program runs for up to two hours, includes a very brief educational presentation and light snacks, and often has a seasonal or holiday theme. It is free of charge and draws, on average, about 70 people. Participants interact in a convenient, comfortable setting where they can enjoy discussion, singing, or dancing with others who share an understanding of Alzheimer’s. There are many repeat participants and as one care partner reported, “The evening brings out the best in my spouse.”

Some people take a few notes while they are reading so they can remember the main characters of the story or key parts of the plot. You can also try discussing what you are reading with someone else. The communication and mental stimulation may increase your ability to process and retain the material.

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Concerning movies, you may want to consider travelogues or documentaries that are not based on a plot as much as on scenery or other action. Sometimes musicals or comedies can be enjoyable because their focus may be more on lighter entertainment rather than complex stories. Also, repetition can enhance learning. If you have a home VCR or DVD player, consider buying some movies for home use. You can watch them as often as you like and the plot and characters will become more familiar to you over time.

The purpose of the nine-member Advisory Group is for the National Alzheimer’s Association to gain insight from people with early-stage dementia into their needs and challenges. The Advisory Group will provide feedback on current and potential activities of the Association and help develop recommendations to increase the participation of people with dementia in the leadership and services oﬀered by the Association and its chapters. After receiving many applications from people across the country interested in serving on the Advisory Group, careful consideration was given to selecting members who will serve for one year and who represent people from diverse geographic and ethnic backgrounds.

National Alzheimer’s Association Advisory Group of People with Dementia On January 30th, 2006, the National Alzheimer’s Association convened the ﬁrst meeting of its new Advisory Group of People with Dementia at its oﬃces in Chicago. This Advisory Group and meeting was spearheaded by the Call to Action petitions circulated last fall by people with dementia, family members, and professionals who wanted to see people with dementia have greater involvement in the mission and services of the National Alzheimer’s Association. Kathy O’Brien, former senior president of the Association’s Programs and Community Services, organized the Advisory Group as a means of opening discussion between people with dementia and the Alzheimer’s Association.

In the day-long meeting in Chicago, members of the Advisory Group provided valuable insights into their experiences of living with dementia and identiﬁed the following key suggestions that warrant attention by the Alzheimer’s Association: ●

Provide more early-stage services and increase access to those services, especially to people in underserved areas.

● Change the face of Alzheimer’s through media and education to alleviate stigma about the disease and to reﬂect the earlier stages of the disease rather than just focusing on the late stages.

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to gain from their invaluable perspectives and expertise.

● Increase physician education and sensitivity about Alzheimer’s and related disorders so that people with dementia don’t feel excluded from their evaluations and care.

Understanding and Participating in Clinical Trials A clinical trial is a test or study of a new drug, device, or procedure. Some clinical trials test the safety of a medication while other trials test how eﬀectively a medication works in relieving symptoms or providing treatment. A clinical trial may also test new tools or techniques to help with the diagnosis or evaluation of a medical problem.

● Involve people with dementia directly in the Alzheimer’s Association’s advocacy and planning work. ● Team up with other community-based organizations to promote services for people with early-stage dementia.

Clinical trials occur in three phases before any new medication or treatment can be approved by the Food and Drug Administration (FDA). In a Phase I trial, researchers test a new drug or treatment in a small group of people for the first time to evaluate its overall safety and dosage and to identify any side effects. In Phase 2 trials the drug or treatment is given to a larger group of people to see if it is effective and to further evaluate its safety. Phase 3 trials usually involve higher numbers of participants and last longer than the previous trials. They also confirm effectiveness, monitor any side effects, and may compare the new drug with any standard therapy currently being used to evaluate or treat the disease in question. At the end of Phase 3 trials, the FDA has usually collected enough

● Address the special concerns of early-onset individuals – those diagnosed with dementia before the age of 65. ● Develop new assistive technologies such as easy-to-use cell phones or computers that could maximize functioning for people with early-stage dementia. In the afternoon, an NBC Network camera crew ﬁlmed the discussion and also interviewed some of the advisory board members independently for future broadcast on the national nightly news. Clearly by their contributions and activism, these advisory board members are already “changing the face of Alzheimer’s” and the National Alzheimer’s Association has a great deal

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data to determine whether the drug warrants approval.

now without the volunteers who participated in the clinical trials.

Clinical trials for new medications have various designs, but usually the most scientiﬁcally respected design is a “placebo- controlled double-blind study.” Placebo- controlled means that up to half of the study participants will be receiving a placebo – a look-alike pill that actually has no active ingredients. This allows the researchers to compare those who receive treatment with those who do not. “Double blind” means that neither you nor the researchers know whether you are receiving the treatment or the placebo. This method assures that there is no bias on the part of the researchers when they are evaluating the eﬀectiveness of the drug.

All clinical trials have inclusion and exclusion criteria. These criteria are based on your age, health status and history, and other medications that you may already be taking that could interfere with the medication under investigation. If you do not qualify for one trial, you may qualify for a diﬀerent one, and with rapid advances in science, there are more and more exciting new trials being conducted. Participation in research can be very rewarding for you, your family, and for the beneﬁt of future generations.

Research Updates Alzheimer’s Disease Neuroimaging Initiative (ADNI) Many scientists believe that early detection of abnormal memory changes is key to better diagnosis, treatment, and possible prevention of Alzheimer’s and related memory disorders. One year ago, Perspectives featured information on a large new study called the Alzheimer’s Disease Neuroimaging Initiative (ADNI) that aims to find the most effective methods for tracking changes in the brain and body fluids of people at risk for, or in the early stages of, Alzheimer’s. This ambitious study, taking place in sites across the United States and Canada, is now underway and is recruiting participants. The study needs 200 people with Alzheimer’s, 400 people with Mild

Some people do not want to participate in a clinical trial if there is a chance they will just be receiving a placebo. It is well documented, however, that people who are unknowingly taking the placebo sometimes experience improvement of their symptoms or condition simply because they believe they are taking something that could be of beneﬁt to them. Also, some receive increased positive attention from repeated visits with the clinical trial medical team and this support can increase feelings of well-being. All of the currently approved treatments for Alzheimer’s would not be available

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Cognitive Impairment (abnormal changes in memory or thinking that increase risk for Alzheimer’s), and 200 people with no known memory problems.

participation in the study, contact Alzheimer’s Disease Education and Referral (ADEAR) at 800438-4380 for the research site nearest to you. You can also find the sites on the internet at http://www.clinicaltrials.gov. Antioxidants and Alzheimer’s There is some research suggesting the benefits of antioxidants in maintaining brain cell health. Antioxidants eliminate “free radicals” from the body. Free radicals are products that are released from normal cells but can cause damage to the cell, or accumulate in the plaques that form in the brain of a person with Alzheimer’s. Antioxidants sweep up free radicals and help the body to eliminate them. As such, there is some hope that antioxidants might help to prevent or reduce brain cell damage in people with Alzheimer’s. Antioxidants can be found in many fruits and vegetables or in vitamin or nutritional supplements. This study will investigate whether certain antioxidants (Vitamin E, Vitamin C, alpha-lipoic acid, and Coenzyme Q10) have an effect on cell health that can be measured in the spinal fluid and blood of study participants. The ability to measure these effects will help scientists understand whether antioxidants have a helpful role in the treatment of Alzheimer’s. For more information on study sites, contact ADEAR or visit the clinical trials web site (see above for phone and web site information).

Neuroimaging involves methods of taking pictures of the brain and includes procedures such as magnetic resonance imaging (MRI), and positron emission tomography (PET). ADNI is using MRI and PET scans, protein biomarkers (substances found in the blood, urine, and spinal fluid), and clinical and neuropsy-chological evaluations to track participants over two-to-three years. The information obtained by studying changes over time could help doctors and researchers make a more accurate diagnosis of MCI or Alzheimer’s, select who may be most appropriate for specific treatments, and monitor treatment effectiveness or response. This is a groundbreaking study that will provide crucial information for the detection, evaluation, and treatment, and possible prevention of Alzheimer’s and related disorders. If you would like more information about ADNI or would like to be screened for

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the future. With his onset of Alzheimer’s, Thaddeus Raushi writes about adopting a survivor’s attitude by focusing on his strengths instead of his symptoms. He states, “I continue to take advantage of my capabilities to build on what I can do and not simply bemoan what I can’t do.” He writes that although he does allow himself time to grieve his losses, he doesn’t dwell on them. Rather, he uses his energy to make use of his many remaining abilities.

Volume 11, Number 4: May-July, 2006 Coping with Alzheimer’s Attitudes and Ideas At different times throughout life, everyone has to face a variety of challenging circumstances. Examples include the first day of school, picking a career, the birth of a child, managing a home, or retirement. All of these events require different coping strategies to deal with or manage the situation. Coping can be in the form of an attitude or an action, and methods vary from person to person.

Many people with Alzheimer’s also discuss the importance of humor as a coping strategy. Laughter can relieve stress and brighten a dark moment. One woman says, “Laugh at yourself! We do funny things sometimes!” Laughter also starts a chain reaction in the body that releases endorphins into the brain. Endorphins can help to create a sense of well-being and calm.

With the onset of Alzheimer’s there are many new things to cope with. Symptoms of memory loss can require ﬁnding new strategies for managing daily life. Relationships go through changes or adjustments, and some activities or responsibilities may need re- evaluating. Throughout this process each person uses coping strategies. Some of them may be old well-known methods, while others may be newer or less familiar.

Do you have helpful attitudes or approaches that you use to cope with Alzheimer’s? It might be helpful to write them down and remind yourself of them during diﬃcult times. It is also important to look at any negative attitudes that interfere with your coping. Everyone has down spells or times when it is hard to cope, but your attitude can make a big diﬀerence in how you get through the tough times.

Some people cope by developing a positive attitude. An attitude is an opinion or approach to something. One man says, “I take it one day at a time.” This approach to life makes things feel less over-whelming and more manageable. It allows him to focus on the present instead of worrying about

Another way of coping is through making adjustments to our behavior.

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This includes evaluating our activities and developing creative strategies for managing memory loss. Many people find that staying busy is a helpful way of coping. Activity can provide meaningful and enjoyable distraction and take one’s mind (continued on off of symptoms. One woman says, “I don’t think about Alzheimer’s! I have lots of other wonderful things to think about - children, grandchildren, reading, walking, eating, and chocolate!” Another man agrees with this approach and says, “When my mind is on something else, I can’t think of myself, so I stay busy.” Some people feel that they have plenty of meaningful activity while others struggle to find ways to fill the time. Symptoms may interfere with doing previously enjoyed hobbies, and it is important to come up with new ways to stay involved in life.

Symptoms of Alzheimer’s can be frustrating and some people need to “let off steam.” It is important to acknowledge the challenges. One man says, “I cuss a lot inwardly – it takes the edge off. I don’t cuss outwardly unless someone steps on my toe!” Some people find that physical exercise is an important coping method that releases tension. Some enjoy the company of a pet on a walk. Another man says, “My little dog takes the edge off. He doesn’t talk back or tell you you’re crazy.” Finally, many persons with Alzheimer’s develop creative and practical methods of coping with symptoms such as making lists, using calendars, or getting medication organizers. Others discuss strategies to stay organized like always keeping certain things in the same place, simplifying wardrobe decisions, or labeling cabinets and drawers. Some get a Safe Return bracelet through the Alzheimer’s Association or another form of medical identification to help them in an emergency. All of these behaviors are positive coping methods for managing daily living.

Another method of coping is through seeking and giving support. People with Alzheimer’s support one another through participating in groups, social programs, email chat rooms, or other activities. The camaraderie of being with others who understand can ease feelings of isolation or stigma. One man talks about his support group, “It’s my salvation to be able to go to a place and be around others in the same predicament. We can get out of the predicament for a while by being with a group of friends.”

What actions have you taken that have helped you to cope? Have you changed your behavior or done something new as a result of Alzheimer’s that has been helpful? Have any behaviors or actions limited your ability to cope? Coping strategies are acquired and used throughout life. You may rely on ones

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that have worked for you over the years, or you may ﬁnd that Alzheimer’s is a new experience that requires new skills. It’s never too late to develop helpful coping strategies. Find out what ones work for you and share them with others!

people at greater risk of getting the disease, but scientists think there are probably more genes that can inﬂuence who will develop symptoms. Understanding genetics can pave the way for better treatments, prevention, or a cure.

Helpful New Resources

The National Institute on Aging, the National Alzheimer’s Association, and study sites across the United States are working together to conduct the Alzheimer’s Disease Genetics Study and are looking for volunteers. They need families with at least three members who can donate blood and participate in an interview. Necessary family members include:

Alzheimer’s Disease Education and Referral (ADEAR) has published two new brief, easy-to-read publications on Alzheimer’s disease and memory loss. “Understanding Alzheimer’s Disease” is a 12-page booklet that provides basic information about signs and symptoms of Alzheimer’s and addresses medical care and participation in clinical trials. “Understanding Memory Loss” is a 16page booklet that discusses the diﬀerences between normal and abnormal memory loss, causes of memory loss, ways to help your memory, and how to get a medical evaluation. Both booklets are written in large print, in plain, straightforward text.

● Two siblings (brothers or sisters) who developed Alzheimer’s after age 60 and ● Another family member over 50 who may have memory loss or a family member over 60 who does not have any memory loss. Family members do not need to live near one another to participate.

Research Update Genetics Study Many people with Alzheimer’s wonder if it is inherited or if they will pass it on to their children. Although there are some genes identiﬁed for those who get Alzheimer’s at a young age, these genes account for fewer than 5% of all cases of Alzheimer’s. Some forms of a gene (called ApoE) can put older

Together: Sharing the Experiences of an Early-Stage Support Group By Dayna Morrow and Participants of the Early-Stage Support Group in Montreal, Quebec, Canada

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Dayna: Tell me what brought you to participate in a support group for people diagnosed in the early stages of Alzheimer’s? Group Members: Many of us were reluctant at ﬁrst. It was scary to ﬁnd that we had Alzheimer’s. Who would understand us? What would it mean to live with this diagnosis? For many of us, we were depressed and isolated with this diagnosis, but wanted to know more about what was ahead for us. Several of us had our kids or spouses initially make the call to the Alzheimer Society of Montreal; however some of us called ourselves, and we’re so happy we did. Everything has been so much better since we’ve come here.

To ask just one of the twelve members of the early-stage support group to share their experiences regarding their participation as a group member seemed unjust as all of these spokespeople have something valuable to contribute to the discussion. As such, below they will share with you their accounts as members of this vibrant and energetic group.

Dayna: When you say better, what does that mean?

Their ages range from their early 60’s to mid-80’s and there is a wonderful mix of religions and cultures to add to the spice and chemistry of the group. Some members have been together now for more than two years with new faces joining them on a regular basis. I sat down with the group to discuss their experience within the support group environment and to ask them to serve as mentors by encouraging others living with the diagnosis to break the isolation and reach out, as they did, for help in their daily living environment. Below is the account that the group members provided regarding their experiences within the support group:

Group Members: It means not being as alone. It means knowing that we’re not crazy, that there are other people living exactly the same thing as we are. We love to come here because we talk and have fun and here, there are no worries, no judgments. We’ve all learned so much about the disease, too. Even though we sometimes forget the details, we can always come back and ask for more information later. Some of us have kids or spouses in the group happening at the same time in the next room, so this helps them to learn about us…and hopefully helps all of us know what to do next.

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Dayna: So what would you say have been the beneﬁts of the support group for you?

in the world. We’d also tell them we know how they feel, we’ve been there. Editor’s note: This article is reprinted with kind permission from the newsletter of the Alzheimer’ Society of Montreal, Spring, 2006, Volume 24, No 1.

Group members: Deﬁnitely talking with others who don’t judge us. Here it never matters if we forget or make a mistake. We’re all the same here and Dayna makes us laugh and have fun. She organizes “brain exercise activities” to keep us thinking and working the old noggins! We like to just be together though, and we wish we could meet even more often! It also helped many of us discuss Alzheimer’s more openly with family and friends and we’ve learned about research, medication, and now we have a little more hope. Some of us have learned a few new tricks, too, like keeping a regular agenda, jotting down notes, and making other changes to help us remember things. It doesn’t always work, but it helps to know there are some options.

There are early-stage support groups across Canada, the United States, Europe, Australia, and other regions of the world. If you would like to join a support group, contact the Alzheimer’s organization closest to you for more information. If there is no group in your region, ask that one be started!

Oh How Can I Tell You By Peter Beeson Oh how can I tell you What this is like How it is to be this way? To be partly here To know some things And not others.

Dayna: What would you tell other people in the early stage who might be considering joining a support group but are hesitant to call?

To be sort of present But not really To know this but not that.

Group Members: We’d tell them just do it – there is nothing to lose and a lot of help here for them. Plus, they’d get to meet us and we’re a fun bunch! We’d also tell them to do it for themselves, that there is hope out there, and that talking with other people who are living this really makes a diﬀerence

Oh how can I tell you That I can’t remember Our wedding date? I remember the wedding The trip to Valentine

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Just not when.

topic to readers that I have updated and revised the article for this issue.

I’m so sorry I feel so bad I don’t want to make you sad.

To drive or not to drive. This is a big question common to many people with Alzheimer’s or a related disorder. While we can't make that decision for you, we can answer some frequently asked questions on this issue:

It’s not that it’s not important It’s not that I don’t care It’s not that we’re not special. It’s not what I would choose It’s not what I want It’s just the way it is.

How can Alzheimer's affect my driving? Symptoms of memory loss, disorientation, and changes in vision and perception may result in drivers getting lost, misjudging distances, forgetting the "rules of the road", or having slowed reaction times when making the many quick decisions needed to drive safely. Concentration can be affected as well as coordination. Some people with memory loss are more easily frustrated in stressful situations. This can affect driving performance.

It’s not that I don’t care It’s not that I don’t love you It’s just the way I’ve become. I ask that you forgive me Over and over again That you remember where we’ve been. I’m so glad that we’re together So grateful for us So thankful for you.

Will my license be taken away because of my diagnosis? It is unlikely that you will have your license automatically taken away due to a diagnosis of Alzheimer’s or a related disorder. In some regions of the United States, physicians are required by law to report a diagnosis of Alzheimer’s to the Health Department who then reports to the Department of Motor Vehicles (DMV). Sometimes concerned family or friends make a report. The DMV then asks you to come in for a written and

I’m so sorry I don’t know I do love you so I just wanted you to know. Copyright Peter. G. Beeson, 2004

The Driving Controversy: Alzheimer's and the Automobile Editor’s note: This article was originally published in Perspectives over 10 years ago. It continues to be such an important

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● Forgetting how to get to familiar places due to memory loss.

driving test. Some people with mild symptoms pass the tests and can continue driving. Many others do not and must stop driving. These reporting and testing procedures vary greatly from state to state. Check with your local DMV for regional speciﬁcs.

● Misjudging distances due to changes in vision and perception. ● Not following traﬃc signals including running a red light or stopping at a green.

Many people with Alzheimer’s have clean driving records and resent that others are telling them to stop driving. It is wiser to quit driving while you can still take pride in your driving record than wait until you have an accident in which you hurt yourself or others.

● Poor decisions in traﬃc, including not using turn signals, weaving across lanes, becoming confused in four-way intersections, or not yielding to traﬃc when necessary. ● Driving too slowly or too quickly.

Do people with Alzheimer's get in more accidents? Studies indicate that drivers with Alzheimer’s are more likely to get into car accidents. Some ﬁndings suggest the accidents are more often "fender benders" than major collisions, but there have been tragic cases of people with Alzheimer’s causing loss of life in serious accidents that were due to their symptoms.

● Losing your temper more quickly or becoming more easily frustrated. Talk with your doctor or other health care professional to review your symptoms and their possible impact on your driving. If I drive with a license and get in an accident, can I be sued? If you have a driver's license, you have the legal right to drive. However, if your disease progresses in ways that aﬀect your driving safety you should stop before it’s too late. If you get in an accident, someone could charge that you knowingly drove (or your family let you drive) in a disabled condition that put you and others at risk. This could result in a lawsuit.

How can I know if I am an unsafe driver? You may not be the best judge of your driving. Sometimes a friend or family member notices problems ﬁrst. Look for the following signs or try to listen if someone points them out to you. Although everyone makes mistakes, repeated errors are cause for concern:

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If I stop driving, how will I cope? For many, driving is a symbol of independence and freedom and it is very hard to give up the keys to the car. Others voluntarily give up driving and are relieved to let someone else assume the responsibility. Sometimes it is diﬃcult not to take the whole issue of driving personally. Remember that Alzheimer’s is only one of many medical conditions that put a person at risk for unsafe driving. You are not being singled out and you are not alone.

communication between people all around the world. Although some ﬁnd it diﬃcult to use a computer, others acquired this skill prior to the onset of Alzheimer’s and retain the ability for some time. Others seek help from a friend or family member, so they can access the resources and support that is available online. A group of people with dementia from the West Kent branch of The Alzheimer’s Society in the United Kingdom (UK) are making good use of their computers. They recently won an Innovation in the Community Award from America Online (AOL), UK for their website, “The Alzheimer’s Forum.” The web site is at http://www.alzheimersforum.org and is run by and for people with dementia as a means of sharing coping ideas, experiences, and support. Questions are posted by people with Alzheimer’s or a related disorder and others can answer and share their ideas. The web site has connected people from around the world and the creators of the Alzheimer’s Forum encourage others to participate.

Explore other means of transportation. Walking can be pleasurable for shorter distances, or friends and family are often willing to provide transportation. Some people are able to use public transportation services or other community transportation services. It is important to focus on your remaining choices and abilities. Whether you are behind the wheel or not, you can still have some say in both the journey and the destination.

Alzheimer’s Website Wins Award In this newsletter’s article on coping, we discuss the ways that people with Alzheimer’s can provide one another with support and camaraderie. The growing popularity of computers has created the opportunity for internet

Congratulations to the creators and participants of the Alzheimer’s Forum for this well-deserved award!

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Volume 12, Number 1: August-October, 2006 My New Journey: One Man’s Reflections on Living with Alzheimer’s Disease by Carol Edwards and Jason Karlawish New Resource: Early-Stage Conference Guide New Report on Early-Onset Dementia Out and About: A Weekly Outings Program Staying Healthy: The Risk of Dehydration Volume 12, Number 2: November-January, 2007 Caring for Each Other: Facing Memory Loss Together Couples Mind and Body Workshop: An Innovative Program for Families Facing Alzheimer’s by Susan Stone The Changing Face of Alzheimer’s by Chuck Jackson Helpful Resources: Early-Stage Newsletters from Canada and the UK Volume 12, Number 3: February – April, 2007 Thoughts on the Importance of Community by Shimon Camiel New Book Reviews

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The Chicago Memory Bridge Initiative by Marie Chedid Research Updates Your Life Story: Easy and Fun Ways to Create an Autobiography Volume 12, Number 4: May–July, 2007 Daily Discoveries “Living Our Lives, Planning Our Futures” A Forum on Early Memory Loss The No-Good Blues and My Everyday Heroes by Tina Noble Reflections by Idel B. McLanathan Listening is an Act of Love: StoryCorps Memory Loss Initiative by Anny Basting, PhD

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Donald Rhoads, M.D., examined and diagnosed thousands of patients while practicing internal medicine in Chestnut Hill, Pennsylvania. In retirement, one of the last examinations he performed was on himself. The diagnosis: Alzheimer’s disease.

Volume 12, Number 1: August-October, 2006 My New Journey: One Man’s Reﬂections on Living with Alzheimer’s Disease By Carol Edwards and Jason Karlawish

Dr. Rhoads has been a patient of the University of Pennsylvania’s Alzheimer’s Disease Center (ADC) since 2004. Like each person facing Alzheimer’s, he is much more than his diagnosis. Donald Rhoads graduated from Stanford University, and the University of Pennsylvania School of Medicine and practiced medicine for 33 years. He served on the boards of directors of Wistar Institute, Friends Hospital, Germantown Friends School, the Stapeley Hall retirement residence, and Foulkeways community, where he and his wife of 50 years, Nancy, now reside. He is a father of six, grandfather of seven, and a long-time active member of the Religious Society of Friends (Quakers). He loves reading, chopping ﬁrewood, stimulating conversation, and strolling in the arboretum near his former home.

Dr. and Mrs. Rhoads

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Now, he is on what he calls “my new journey . . . my trip through losing my cognitive abilities.” He says it without hesitation. He looks directly at the person to whom he’s speaking. His eyes are gentle and his expression is kind, supportive of the listener whom he sees has been struck by the gravity of those words. As a doctor, he has considerable experience in delivering diﬃcult news, and in helping people accept it.

JK: I recall that at your ﬁrst visit, our testing picked up only memory-related problems, not the other functional losses associated with Alzheimer’s disease. So I thought, maybe this is not necessarily Alzheimer’s. But you said, ‘No, that’s not all. I have trouble organizing and ﬁguring things through.’ Basically, you told me our testing was not getting at all the problems. I thought that was a striking example of awareness and candor on your part.

Dr. Rhoads recently shared insights about his journey with Alzheimer’s with Jason Karlawish, M.D., of the Pennsylvania ADC. In agreeing to be interviewed, Dr. Rhoads said simply, “to help others with their understanding, and their emotional acceptance of this disease, I would be honored to tell you about mine.”

DR: I’m reality oriented. You have to be to be a good physician. Getting Through

Self Diagnosis Dr. Jason Karlawish (JK): Why did you come to the Alzheimer’s Disease Center? Dr. Donald Rhoads (DR): Because I knew I needed help. I was having trouble with my memory. I’m a self-examiner, as well as an examiner of others; you have to be as a physician. As it went on, I was learning about myself, in a way, self-diagnosing. When I went to the Penn ADC, I knew there was a problem.

Dr. Jason Karlawish and Dr. Donald Rhoads

JK: What is it like thinking about this disease? Is it a source of pain or anxiety for you? DR: [After a long pause] You observe what’s happening and you try to go with it. You don’t let it throw you oﬀ the

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horse, get you so upset you can’t function, because then you’d just throw away your life.

her, the patient, that they have Alzheimer’s. I don’t want them to know that.’

JK: What symptoms do you feel bother you the most?

DR: The word is denial, psychologically. They want to deny it. They don’t want to upset themselves or their loved one. It’s a common behavior. They have good intentions, but that’s not enough.

DR: The whole thing is just . . . inconvenient. You can’t do as much intellectually as you’d like. You can’t keep all the variables in mind to make decisions. It starts like that in the beginning, and just gets worse.

In practice, if I had a family say to me ‘don’t tell him, or her’, the ﬁrst thing I would do was to sit down and explain to them why we must talk to the patient. I helped the family change their focus from denial to support. And support in this case means acceptance. You must give them the help they need to make that change. That was part of my philosophy of practice, and of life. Problems are to be acknowledged and addressed.

JK: How do you cope with that? DR: You do the best you can, knowing you can’t do everything. Coping is much a matter of personality. You try things that might help you do better. And I don’t give myself extra handicaps by getting upset. JK: Do you have speciﬁc strategies for coping?

JK: How do you approach your family, friends and associates regarding your disease?

DR: Just ‘keeping cool.’ That modern language is a shortcut to describe not getting upset, which is self-destructive. I am dead set against self-destructive behavior. I try to examine myself, see what’s happening, and not self-destruct.

DR: I’m not putting on a front or hiding. My children are all aware. My situation is not denied by anybody. And we’re talking together here, (for the newsletter) if that can be a help to others.

Facing the Word JK: What do you think of cases where the family of a person who has been diagnosed with Alzheimer’s disease will say to a physician, ‘Don’t tell him or

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On Research

today. That is what I would try to explain.

JK: You’ve taken part in two research studies since you came to the ADC. Why do you do this? DR: It’s part of my general philosophy of life, who I am, why I went into medicine. To help people. These studies ﬁnd new ways of doing things with this disease. There is so much to be found out, it’s the only way to progress.

JK: How can a person facing Alzheimer’s reach the kind of overall acceptance you’re talking about? DR: There’s the intellectual acceptance part, and the emotional acceptance part, and you fuse them together, for wanting to survive. People want to survive. They want to continue. With this, if you want to survive and continue, you have to accept. Then try and make realistic plans and accommodations for your life.

JK: Would you put any limits on deciding whether or not to be in research?

Editor’s note: We thank the University of Pennsylvania Alzheimer’s Disease Center (ADC) for their permission to reprint a condensed version of this interview, originally published in their newsletter, The Quarterly, Spring 2006. The interview can be read in its entirety at http://www.pennadc.org.

DR: Well, as long as you don’t torture me too much (smiling), physically or mentally, I’d do it. I’ve had no problem so far. Obviously, I don’t have the demands on my time that I did in my career. I can’t spend all my time with my children and grandchildren, so I make myself available.

Research Updates

Reaching Acceptance JK: What would you say to others facing these changes in their lives?

This past July, over 5,000 attendees from 50 countries participated in the 10th International Conference on Alzheimer’s Disease and Related Disorders (ICAD) in Madrid, Spain. The conference was the largest gathering of Alzheimer’s researchers in history. Researchers presented information on the latest updates in early detection, diagnosis, treatment, and prevention of Alzheimer’s and related dementias. Some updates included:

DR: If they are younger than I am, I’d say, ‘Stay Cool.’ I’d hope they would understand that. When you asked me to meet with you for this interview, you said you were interested in the fact that I am somewhat accepting of my situation, not getting upset, and trying to do the best I can with what I have. That is my outlook. That’s the approach I’ve been talking about here

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Methods of Managing Medications

and many have diﬃculty remembering to take their medicines correctly. The researchers developed video technology that they placed in the home that enabled them to communicate directly with the person with memory loss about when it was time to take medicine. This communication by video helped the participants take their medication more eﬀectively than those who did not have the video communication. The researchers hope that this kind of technology could help persons with memory loss reside independently in their homes for a longer period of time.

Currently there are four main drugs on the market for people with Alzheimer’s (Aricept, Exelon, Razadyne, and Namenda). Although these medicines are of some benefit to many people who take them, others find that it is difficult to remember to take their pills or they feel unpleasant side effects of nausea or vomiting from these medications. Scientists from the US and Sweden reported on a new way of taking Exelon (also called Rivastigmine) that helps to eliminate the problem of remembering to take the medicine and also greatly reduces unpleasant side effects. They developed a “transdermal patch” that provides a controlled, continuous delivery of the medicine through the skin. The patch was as effective as taking the pills and there were fewer reported side effects. Caregivers also preferred the patch as they felt it was easier for their loved who did not have to remember to take the medicine. The patch could be available next year if it is approved by the Food and Drug Administration (FDA).

News from Clinical Trials A number of researchers reported updates or ﬁndings from their clinical trials. Clinical trials enroll participants with dementia in studies to evaluate the safety and eﬀectiveness of hopeful treatments. Results from one study suggest that Leuprolide Acetate, a drug currently used to treat prostate cancer and other conditions, may help people with mild-moderate Alzheimer’s maintain mental abilities for a longer period of time. Based on preliminary laboratory studies, scientists are also hopeful that a compound called PBT2 may help to limit the amount of amyloid protein that builds up in the brains of people with Alzheimer’s.

Researchers from the Mayo Clinic reported on a diﬀerent method of managing medications. These researchers noted that 30 to 40 percent of people with Alzheimer’s are living alone when they are ﬁrst diagnosed

Findings from these studies and many more were reported at the conference

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and we will keep readers updated as we hear of new developments.

people with memory loss, and excerpts from speakers and workshops.

New Resource Early-Stage Conference Guide

New Report on Early-Onset Dementia

People with early-stage Alzheimer’s or a related disorder often beneﬁt from information, services, and peer support so they can learn coping strategies for living with dementia.

Early-onset dementia refers to persons diagnosed with Alzheimer’s or a related dementia prior to the age of 65. Individuals with dementia in their 30s, 40s, or 50s often face unique economic, social, and emotional challenges. The National Alzheimer’s Association has recently released a report that focuses on the growing concerns of individuals and families facing early-onset dementia.

Beginning in 2000, The New York City Chapter of the Alzheimer’s Association pioneered an annual conference organized by and for people with early-stage memory loss. The Early-Stage Conference is a collaborative eﬀort of persons with dementia, their support group leaders, family members, and professionals. The half-day conference is a powerful event that provides education, support, and encouragement to people with memory loss and their families. One goal of the conference has been to change how the public and health care professionals view persons with dementia, and the conference coordinators feel they have made a real impact in this area.

The report notes that there may be as many as half a million Americans under the age of 65 who have dementia. It is often more difficult for younger people to get an evaluation and diagnosis because dementia is usually associated with older age. Also, many people with early- onset dementia are still working when their symptoms emerge. Onset of symptoms can create significant problems at work. Without a proper diagnosis and knowledge of available benefits, individuals cannot apply for state and federal disability benefits or other medical benefits for which they may be eligible. Earlyonset individuals and their families also

The New York City Chapter now has available a DVD of their ﬁfth annual conference, as well as a viewer’s guide on how to create your own event. The DVD is live coverage of the conference including personal accounts from

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often struggle to ﬁnd a peer group and when in support groups, day programs, or long-term care settings with people who are a generation older.

that has happened to me in a long time!” “Yes, my wife and I will have an argument and not long after, I’ve forgotten about it!”

The National Alzheimer’s Association has put forth a number of important recommendations for government, scientiﬁc research, health care, and social services to help meet the needs of early-onset families. To obtain a copy of this report contact the National Alzheimer’s Association Green-Field Library at 312-335-9602 or view the report on the Alzheimer’s Association website at http://www.alz.org.

“I’ve met some great people in my support group. I didn’t choose to get Alzheimer’s, but I’ve found some new friends.” “I’m more ﬂexible now. I know I can’t always call the shots.” “I’ve become more physically active. I know that there isn’t a lot I can do to make my memory better, but long walks help me stay strong and keep my mind oﬀ of my problems.”

Brainstorming How would you answer the question: “Has anything good come out of having Alzheimer’s?”

“I’ve realized that I think people are basically good. I don’t like to ask for help, but when people ﬁnd out my problem, they are usually kind and don’t treat me strangely, so that’s something good, I guess.”

Here are some of the answers: “I’ve learned to slow down a bit and ﬁnd something to enjoy in each day.” “I spend more time with my grandkids now and my own kids say they have more time with me now than they’ve ever had before.”

Questions and Answers Q. Recently I was trying to clean out one of my desk drawers and at one point, the whole project just seemed overwhelming. I lost track of what I was trying to do and everything started to look very confusing. This happens other times, too, and I don’t know if I should just stick it out and make myself try to concentrate or if I should give up?

“I’m learning to be more patient with myself and others. Or I’m trying at least.” “We got a dog so I would have some company and that dog is the best thing

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A. When you are working on any task or problem, it is important to break it down into small steps. Take one section or stack in the drawer at a time and try to sort it out before moving on to the next section. This applies to other activities, as well. If you’re doing yard work, do one task at a time (raking, for example before you start watering). Having too many pieces of a project going on at once can increase confusion.

Out and About A Weekly Outings Program Out and About is an 8-week series of socially and culturally enjoyable outings for people with mild-moderate dementia. It was inspired by discussion amongst participants of the weekly early-stage support group that meets at the University of California, San Diego, Shiley-Marcos Alzheimer’s Research Center. Participants wanted to get “out and about” and have more involvement in their community. An 8-week Out and About series that enrolls eight participants is now oﬀered up to four times a year.

If you ﬁnd yourself getting frustrated, it may not be productive to try to stick it out. It is probably time to take a break. Sometimes a few minutes of taking some deep breaths and relaxing can help renew energy and focus. It can also be helpful to ask for some assistance if the frustration or confusion is building. You might ﬁnd that someone else can help you regain your train of thought by reviewing the project or task with you and helping you to refocus and get back on track.

Although not every outing is equally popular with each participant, the program is varied enough to cover a wide range of interests and activities. Each outing begins with lunch at a restaurant followed by the outing. To date, over 30 diﬀerent sites have been explored, ranging from a harbor cruise on the San Diego Bay and a train ride up the coast, to a martial arts demonstration and visits to numerous regional museums and animal centers. Participants are driven in the vehicles of the two staﬀ members that go on each outing. “The best part is getting out of the house and going great places with the friends I’ve met,” says one participant.

Memory loss requires that you adjust your expectations of yourself. Give yourself more time to do things, take it one step at a time, and ask for help if needed. And most important, don’t be too hard on yourself! Chances are, you are doing the best you can with a challenging situation!

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● Avoid excess caffeine in coffee, black tea, or colas as caffeine causes fluids to leave the body. Decaffeinated beverages are fine. ● Fill a container with a quart of fluids and drink from it throughout the day. By the end of the day, if the container is empty, you’ll know you have had plenty of fluids.

Staying Healthy The Risk of Dehydration

● Contact your doctor immediately if you have any symptoms of dehydration.

Drinking fluids is necessary to maintain healthy bodily functions. Dehydration is the result of not drinking enough fluids or losing fluids from conditions such as sweating or diarrhea. Although many people think that dehydration is only a concern in warmer weather, one can become dehydrated at any time of the year.

● Avoid going outside in the hottest part of the day.

Volume 12, Number 2: November-January, 2007 Caring for Each Other Facing Memory Loss Together

Symptoms of dehydration include: increased confusion, fatigue, dizziness, nausea, dry mouth, and dark, yellow-colored urine. Memory loss can place one at increased risk for dehydration. Some people with Alzheimer’s are less aware of feeling thirsty or simply forget to drink ﬂuids. Others are less sensitive to temperature and can become overheated or dehydrated without realizing it.

When we read or talk about Alzheimer's or related disorders, we often come across the words "caregiver," “carer,” or “care partner.” These words describe a person who gives care to another. Caring can be expressed through an exchange of feelings, or a thoughtful action. We usually hear about how others provide care for people with dementia, but we rarely discuss how people with dementia can give care, too. Although

● Make sure to drink ﬂuids with every meal. Fresh fruits and vegetables are also a source for ﬂuids.

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your symptoms of memory loss may mean that you need more assistance, there are many ways that you can give back in return. When care is exchanged, a partnership can develop where you can more eﬀectively face challenges together. As you read this article you may want to think about the ways that you care for the people who are trying to care for you.

How do you and your care partner acknowledge any needs for personal time? Do you care for one another in that way?

Another way to show your care is to be attentive to a person’s emotional feelings. We all beneﬁt from emotional support and understanding. We may not always require someone to take full care of us, but we always need someone to care about us. The wife of a man with Alzheimer’s notes her appreciation when her husband is attentive to her feelings. She states, “He notices my stress and that helps a lot.” Another man with memory loss is also concerned for his care partner’s feelings. He says, “Be sure you’re doing things in a way that doesn’t worry your caregiver. It makes me feel better when she’s not worried.”

Some people show their care for each other by respecting the need for personal time. This may be quiet time on one’s own where you can feel more rested or just a few uninterrupted moments to do something that you want to do. One man with Alzheimer’s states, “I urge my wife to get away. My kids are around, so they can help me out if she’s gone.” He notes that his wife seems more rested and patient when she can get a break for a little while. In his concern for her well-being, he is giving care to her. Another woman with Alzheimer’s realizes a similar exchange with her husband. She says, “We’ve been together a long time, but my husband and I give each other space.”

Being attentive to another person’s feelings may mean doing something that you would rather not do. You might let your care partner do the driving, or consent to having company even when you think you're ﬁne left alone. Just as the ones who care for you make many adjustments, sometimes you will need to make adjustments, too. By doing something that will ease their worry, stress, or provide them some relief, you become a care partner, too. You may not always feel like you need help, but sometimes others could

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want to do things for you because it helps them feel better about the situation. One woman with Alzheimer’s gives important advice about accepting help when she says, “Realize that the caregiver may have a need met by caring for you.”

way. When asked how her husband with Alzheimer’s shows caring for her, one care partner responded with a big smile, “He brings me my coﬀee in the morning.” Even if your care partner doesn’t have anything particular that needs to be done, it is a caring act to ask. A woman with vascular dementia says, “I ask my husband how I can help him.”

Being attentive to another’s feelings may also mean trying to understand what another person is experiencing. With the onset of Alzheimer’s or a related disorder, it may be hard for you to describe to others what it feels like to experience memory loss. Sometimes others notice symptoms that you may be less aware of or can’t explain very easily. Your care partner may be trying to better understand your daily experiences. One man with Alzheimer’s says, “I try to appreciate that my caregiver often has to be my interpreter. A good caregiver can be an important communicator to tell others what is going on. They are good observers. A lot of us don’t tell the doctor everything. We forget what we forget.”

Families facing memory loss together talk about the importance and therapeutic beneﬁts of humor. One daughter says about her mother, “She gives me laughter and ‘thank yous’ that brighten my day.” Never underestimate a sincere expression of gratitude as an act of caring. How do you and your care partner show your care for one another?

Caring for one another can be a delicate balance of actions, thoughtfulness, and attention to feelings. Although memory loss and other symptoms may mean that others provide more assistance to you, there are many ways you can give back in return. Through this exchange, you and your loved ones become true partners in care.

How do you and your care partner acknowledge and respect one another’s feelings? Caring is also expressed through a kind or thoughtful gesture or statement. With the onset of memory problems, your care partner may have assumed more responsibilities. You may wonder what you can do in return. Sometimes the smallest steps go a long

MAILBOX Dear Editor, I have multi-infarct dementia, one of the vascular dementias. I was in a job I hated and had to give it up, as despite years of doing it, I couldn’t cope

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anymore and instead of being helped through this diﬃcult time, was soundly castigated.

people, I can give talks to large audiences, the largest being seven hundred and ﬁfty. I am enjoying my life now, more so than before diagnosis and will continue to help others for as long as I am able to hold the illness at bay. I have met so many nice people through my illness – those with the illness and carers, and those dedicated professionals. I move in a diﬀerent circle now.

I have always wanted a job where I help others. I found this role by accident after diagnosis. I talk to others about dementia, to exhort and encourage them to have a life and not sit depressed at home as I did for over a year. I talk to carers, telling them to encourage those in their charge to make the best of the deal they have been dealt. I speak to professionals telling them how they can encourage their service users to make the most of their talents and to help them learn new hobbies. I never used a computer in my working life and I, and others like me, were taught to use the internet.

There is so much more I can say, but this is just a small snapshot to help you out there to motivate others. You will see the beneﬁts, I promise you, and you will experience job satisfaction. Dementia changed my life forever, but it has not defeated me.

I found that I became creative and despite not being able to read or write or play an instrument, I can write songs. I hum to a friend and he writes down the musical notation. I appreciate they are not number ones, but they are recognizable songs.

Sincerely, James Mckillop Glasgow, Scotland Editor’s note: James writes about a “Helpcard.” This card is distributed by Alzheimer Scotland to its citizens with dementia to increase public understanding of how a person with dementia might need help in some circumstances. Information about the card is on the web site: http://www.alzscot.org/pages/info/help card.htm. You can contact your regional Alzheimer’s Association or Society to ﬁnd out if such a card is available in your country. If not, ask that one be created!

I brought out a Helpcard for people with dementia and a book of my photographs, after being retrained to use my camera and have been involved in other projects, such as a booklet to be given at the point of diagnosis, but too numerous to be mentioned here. From being a shy retiring person who would not speak in a crowd of three

Dear Readers,

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Perspectives provides an opportunity for people with memory loss to share their experiences, concerns and wisdom with others. We value hearing from you and hope that you will contact us with your questions, comments, or contributions to share with other readers.

brains of people with AD) as well as other damaging eﬀects to the brain. Intravenous Immunoglobulin (IVIg) IVIg contains naturally occurring antibodies against beta amyloid. Preliminary studies have shown that IVIg may improve thinking abilities and help to prevent amyloid protein from depositing in the brain.

Research Updates Upcoming Clinical Trials The Alzheimer’s Disease Cooperative Study (ADCS) is a group of nearly 70 sites in the US and Canada coordinated through the University of California, San Diego (UCSD), that conduct clinical trials of new Alzheimer’s treatments. Recently, the National Institute on Aging announced that it will award the consortium $52 million dollars over the next six years to conduct several new trials. The trials will include drugs aimed at slowing the progression or treating the symptoms of Alzheimer’s disease (AD), as well as new methods for conducting research. Upcoming studies include:

Lithium Tau protein is a second protein found in the brains of people with AD. The drug, lithium has been shown in animal models to block damaging abnormal changes in tau. Researchers will conduct a study to see whether lithium can lower tau and beta amyloid levels in cerebrospinal ﬂuid and be safely tolerated in older people with AD. Home-Based Assessment Elderly individuals may have physical, social, and health limitations that make it diﬃcult for them to take part in research. This study, conducted in people aged 75 and older, will examine the use of mail-in questionnaires, automated telephone technology, and computerized data collection to see how home-based assessments might be used in primary prevention trials. Home-based assessments could reduce the cost and increase the feasibility of participation in these long-tem, costly clinical trials.

Docosahexaenoic Acid (DHA) This trial will examine whether treatment with DHA, an omega-3 fatty acid found in ﬁsh, will slow decline in AD. Some studies associate high ﬁsh consumption with reduced risk of AD in people, and studies in mice with AD show that DHA reduces brain levels of beta amyloid (a protein that deposits and forms damaging plaques in the

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roles that are not limited to “caregiver” and “care receiver.” Finding those activities can often be a diﬃcult and frustrating task. The Couples Mind and Body Workshop was developed to help meet this need and was built on our successful Mind and Body Workshops. We began with a four session pilot program and 11 participants, including spouses and adult children. Without exception, all participants enjoyed the sessions and beneﬁted from them.

These upcoming projects will join current ADCS trials that are testing whether statins and high-dose folate/B6/B12 supplements can slow the clinical signs of AD, as well as a study of valproate to determine whether this drug can either slow decline or help delay the agitation and psychosis that can occur with AD. Leon Thal, M.D., chair of the Department of Neurosciences at the UCSD School of Medicine and principal investigator of the ADCS states, “We have been able to bring together a larger universe of people studying therapies for Alzheimer’s and I think this group of studies reﬂects new thinking in how to approach the disease.”

Recognizing the healing power of laughter and the benefits of yoga breathing and stretching, Laughter Yoga was introduced as our “Body” portion of the workshop. Twenty minutes of laughter promotes deep breathing, stretches muscles and renews the body and spirit. Whether laughter is merely the chanting of “ha ha ho ho ho” or a genuine belly laugh, the benefits are the same. The Laughter Yoga techniques are easily adapted to benefit everyone, and can be used in everyday situations to help relieve stress and redirect focus to a positive activity.

As these new studies move forward, information will be available at the National Institute on Aging’s Alzheimer’s Disease Education and Referral (ADEAR) Center by calling 1-800-438-4380 or checking clinical trials on their website at http://www.nia.nih.gov/alzheimers.

Couples Mind and Body Workshop An Innovative Program for Families Facing Alzheimer’s By Susan Stone Over the years, we have found that many families are looking for positive and fun activities to do together in

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other ways to communicate with my partner, and how to get things done without getting too frustrated or angry,” and “The workshop is the ﬁrst positive thing relating to my Alzheimer’s…” Our ﬁrst session of the Couples Mind and Body program was such a success that we held another series of four sessions throughout October. The sessions were held at the Center on Tuesday evenings and were open to those with Alzheimer’s, their spouses, partners, or adult children. There is a nominal fee for the 4-week series. Class size is limited to ensure maximum interaction and support for all participants.

Word games, trivia, word finds, category matrixes, phrase recall, and reminiscing are all used during the sessions. Couples are encouraged to work as teams so that everyone can be successful with the exercises. Lightheartedness and creativity are encouraged, and no answer is considered wrong. We just find a way to make it relate! The support provided by participants to each other is one of the positive “extra” benefits of the workshops. These games and exercises are adaptable for all levels of abilities, and are presented in a user-friendly format, providing families with positive activities to do at home.

The Changing Face of Alzheimer’s By Chuck Jackson It really hasn’t changed that much. Just the clothes and the medications are diﬀerent. Thank God for the medications! I recently traveled to Washington DC to save our Alzheimer’s research dollars, but I returned with so much more.

Some comments from participants include: “This program has given me more insight as to games, activities, and

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(whew that is long), we were housed in the Grand Hyatt Hotel, a beautiful place to be in DC. They fed us well and gave us great opportunities to visit with the other 300 or so advocates from all over the nation. It was exhilarating for me to see so many people involved in this political forum. I wish everyone involved in Alzheimer’s advocacy in Oregon could have been with me. We sat through many training sessions on what issues to raise with members of Congress, how to address them, how to make appointments with them, and how to make an impact about the need for Alzheimer’s research dollars to be increased and not cut.

“I recently traveled to Washington DC to save our Alzheimer’s research dollars, but I returned with much more” My trip to DC was great, though time will tell how effective it was in convincing Congress to continue funding Alzheimer’s research. I was accompanied on the trip by my care partner, Marianne Gardner and my daughter Rachel. We flew out early so that we could see a few sights in the DC mall. There is an old legend in our family about Great Grandpa Jackson riding with Custer in the Civil War. He was a flag bearer, and one of the few who survived the war. So I searched the Smithsonian for a flag on display that matched our family story. Whether the story is true, I don’t know, but belief and the journey is the issue, not necessarily the result. That is so true with having Alzheimer’s, too. It is the journey, not the result that is important.

I know that our Oregon Congressional Delegation will vote for us on these issues. Senator Wyden made an effort to meet with us and hear our personal stories. Congresswoman Hooley’s staff took great pains to be exceptionally helpful. I was surprised and pleased to know first-hand that all of our Congressional representatives worked to make us welcome and to hear our story. They were all happy to talk to us about the issues surrounding Alzheimer’s disease and to meet me as a person with dementia advocating for myself. This trip for me became not only a trip for advocating for Alzheimer’s research, but also became a time of personal discovery. As we were sitting down to dinner at our first formal meeting, two

As a representative of the Alzheimer’s Association’s Persons with Dementia Advisory Group on Early-Stage Issues

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young women came over and sat with us. They were from Utah and Idaho, sisters with a mission. Their mother had recently been diagnosed with early-onset Alzheimer’s disease. In their search to ﬁnd out information about the disease, they heard a story about another family with early-onset AD that they were related to. That family was mine. They were related to me through my great-grandmother’s family.

marvelous thing to see folks from all over the nation gathering to change the face of Alzheimer’s disease. Editor’s note: In his essay, Chuck refers to “early-onset” Alzheimer’s disease. Early-onset refers to people diagnosed with Alzheimer’s before the age of 65. This is distinct from early-stage” which refers to the degree of disability regardless of the age of onset.

Helpful Resources Early-Stage Newsletters from Canada and the UK

As our meetings progressed for the three days of training, more and more persons with dementia arrived. I was ﬁnding myself talking to people my own age, some younger, some older, but people with early-onset Alzheimer’s. We compared notes on drugs, symptoms, and emotions dealing with the disease. Many of them told me that they came just to hear me speak on early-onset issues. They were thrilled that we were being acknowledged and listened to. The conference hosts found another room for us to meet in and have an impromptu break-out committee on early-onset issues and then oﬀered us a reception to be able to chat together.

As more and more people around the world are diagnosed with Alzheimer’s or a related disorder in the earlier stages, many organizations are attempting to ﬁll the void in literature that has been available speciﬁcally for persons with dementia. The following newsletters are available free online or by email subscription. For those of you who do not have access to a computer, it is often possible to ask a friend or local organization to print out information from the computer to share with you. Insight – For and By People With Dementia is a newsletter of the Alzheimer Society, British Columbia. An index of articles from past issues of the newsletter is available for reading at http://www.alzheimerbc.org/newslette r.php

The night before going to the Hill, we gathered in front of the Washington Monument and on the edge of the reﬂecting pool listening to speakers encourage us to do well. I did get to meet and shake hands with David Hyde Pierce from the television show Frasier. He is an advocate for us, too. It is a

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Living with Dementia is a newsletter for people with memory problems published by the Alzheimer’s Society in the United Kingdom. The newsletter features early-stage events and activities in the UK as well as tips on coping, and content written by persons with dementia. The newsletter can be downloaded as a pdf ﬁle on the Society’s web site at: http://www.alzheimers.org.uk/i_have_ dementia/newsletter/index.htm

Volume 12, Number 3: February – April, 2007 Thoughts on the Importance of Community

Alzheimer’s is one community. I don’t think we’ve looked at the needs of Alzheimer’s people and their families enough. We’re getting older and we’re so separate from each other. I have a feeling of sadness for people who are isolated. You need warmth, especially initially, when you ﬁnd out you have this disease. I would spend a lot of money making that time easier. Educating family and friends about the disease can bring you all closer.

By Shimon Camiel Editor’s note: Shimon has a doctorate in public health and was diagnosed with Alzheimer’s over ﬁve years ago. He was born in San Diego, California, and spent 17 years as an adult living on a kibbutz in Israel. He is the author of three books and resides with his wife in San Diego. I am a public health person and part of me is impaired now, but I’m not going to quit doing public health. What public health looks at communities. Just imagine yourself up in the air somewhere and you’re looking down and saying this community down there is having some trouble. So that’s the meat of public health. We see it, then we might try to help change it to make it work better.

When I ﬁrst learned about my condition, I thought I was going to die right away. Those ﬁrst couple of days or months, I thought that maybe I’d jump out of a building or something, but then it passed. The main thing is the support I have from my wife and pals.

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I had so many people around me when I was diagnosed. That was my comfort and my community. I think that’s why I landed on my feet. For a half a year or so, I was feeling sorry for myself, but now I’m having a great time. After that ﬁrst shock I found myself kind of beginning to get back into my mischief and my laughter. I know some people who have no humor at all and I don’t know how to ﬁx that. I grew up in a family of people who were joking.

Because of my positive experience living on a kibbutz, I’ve had to create a community here. A kibbutz looks and functions like any other place except that at the end of the year everybody gets the same amount of money. Most people rotate jobs often, taking their turn in diﬀerent work places. Some people do the same kind of work all of the time, but each one of us has to help out the entire group. There is always some person who has to do the dirty jobs, but the next day it will be someone else’s turn. So we do whatever is needed to keep a decent community going. There are people who wouldn’t feel they want to work together – for them, there are other systems, but the system that is best for me is equality – working together as closely as possible.

There are so many things to do in life. Right now I have this entourage of friends I walk with often. I’m just moving ahead. I don’t think I’m a hero, but I just became interested in moving around – in exploring. Many Americans don’t do enough as far as their bodies are concerned. That should be a huge priority - getting people to move around more. Without that, you’re just stuck. You need people around you. I guess there are people hiding in a closet that never get out, but in general people need to touch people and to surround each other and feel connected, even if you don’t have Alzheimer’s.

I remember in the kibbutz – when somebody left the kibbutz for a time and returned, everybody knew he was back right away, and he knew everybody in the whole place. That’s a village. So we need to have more villages wherever we live. If you went to any rural community in the United States, you would probably ﬁnd a similar kind of thing. I feel we don’t have that kind of interest in each other in our cities as much, but I would say closeness and concern for each other are major factors in quality of life.

I love to see people forming families and connections. Our support group has that – we are family – its a little family. I would like it much larger! Not that I want to create more of this disease in order to make that happen. Feeling safe, not paranoid, but feeling the warmth of family. We have that in

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our support group. People need to touch each other and be touched. I don’t want community to be just a lucky occurrence – it’s part of what decency is. We need that so much. We need to give some time to thinking about that and how to make that happen.

job as a psychology professor due to early onset AD, Richard found that writing was not only therapeutic, but also helpful to others interested in learning about the disease. Written with the aid of voice recognition software, more than 80 essays describe his insights and experiences since he was diagnosed more than 5 years ago.

Editor’s note: In his essay, Shimon talks about the great value of community. Over the years, Perspectives newsletter has helped to build a sense of community among people with Alzheimer’s or a related disorder from all around the world. Perspectives reaches people in many diﬀerent countries and strengthens our international connections. If you would like to share your thoughts with this community, please send any reﬂections, letters, or comments to Lisa Snyder at the mail or email address below. We look forward to hearing from you!

Richard’s intelligence, sensitivity, anger, humor, and tenacity shine throughout this book. With brutal honesty, he dissects his thoughts and feelings about the disease that is slowly robbing him of his intellect. He rails against doctors and other well-meaning people who unintentionally marginalize him. He wants to be recognized as a full human being in spite of his impairments that are not obvious to the reader. His wife’s moving tribute in the book’s introduction and his description of his symptoms reveal the dilemma of anyone living with AD: the appearance of normalcy disguises the reality of the changes occurring in the mind. Family caregivers and professionals have much to learn from such personal accounts.

New Book Reviews Alzheimer’s from the Inside Looking Out By Richard Taylor Reviewed by Daniel Kuhn, MSW Author of Alzheimer’s Early Stages – First Steps for Family, Friends, and Caregivers

Richard is clearly on a mission to change how the world thinks and acts toward him and millions of other people aﬀected by dementia. This book moves that mission forward.

The latest ﬁrsthand account about living with Alzheimer’s disease (AD) is Richard’s Taylor’s provocative book, Alzheimer’s from the Inside Looking Out. Forced to retire from his

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Strengthen Your Mind

provide this opportunity for individuals with early memory loss.

By Kristin Einberger and Janelle Sellick

The Chicago Memory Bridge Initiative

Reviewed by Judy Filippoﬀ, MSW This book is just what many people with early memory loss who are seeking mental stimulation are asking for. While not a cure for memory loss, the book is packed with creative tools that stimulate a variety of senses. It provides an enjoyable way to stimulate memory and thinking while alone or to enjoy together with family and friends. One woman with Alzheimer’s said, “I’m having a good time doing these. I really didn’t know I was this good at trivia!” In a group setting, this book will provide enjoyable activities with diverse choices that will work for people with a range of abilities and challenges. One participant of a memory loss group that uses the book states, “This would be great for a half-day class. There are so many choices in what you could do that you wouldn’t get bored. After you ﬁnish one of the exercises you feel like you accomplished something and had fun!” Hints for facilitators and activity directors on how to incorporate tactile sensations with the worksheets are included, along with solid suggestions on how to use the worksheets to their fullest potential. This is one of the most straightforward, useful, and enjoyable resources I have seen for those who want to take a proactive approach to enhancing memory, and for those of us who want unique ideas on how to

By Marie Chedid The Chicago Memory Bridge Initiative (Memory Bridge) is an after-school program created by the Foundation for Alzheimer’s and Cultural Memory and funded by the Illinois Department of Human Services. The mission of the program is to develop emotional and social sensitivity in middle and high school students while keeping individuals with Alzheimer’s disease in long-term care facilities meaningfully connected to people in their community. Throughout the twelve-week program, students learn how to listen attentively and supportively to people with Alzheimer’s. Eighty-six year-old Hanna and teenage Diana met through the Chicago Memory Bridge Initiative. Hanna lives in a long-term care residence in Chicago; Diana is a high school student on the city’s north side. When Hanna and Diana get together, they can’t stop talking. “She knows a little about everything,” Diana says when speaking about Hanna. “I can talk to her about anything.” “She is very sweet,” Hanna says about Diana.

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The students’ objective is to create a trusting and creative environment so that everyone feels comfortable sharing about themselves. The students also learn about the brain, memory, and the cultural and social foundations of identity, but they explore these subjects as they are experienced by people with memory loss. In this way, a student in the program like Diana learns that although Alzheimer’s disease may impact Hanna’s life, it does not deﬁne it.

In the fall of 2006, Memory Bridge received two awards from the Illinois Healthcare Association, the 2006 Media Award and the Innovative Program Award. But the magic of the Chicago Memory Bridge Initiative isn’t hidden in a 12-week curriculum or in its awards. It exists in the conversations between Hanna and Diana, in the richness of the memories that Hanna shares with Diana, and in the knowledge about Alzheimer’s disease and the life lessons that Diana takes from this relationship with her into her adulthood. The magic is the relationship that forms a bridge between two people.

Research Updates

Hanna was born in Germany. Diana was born in Romania. When Hanna and Diana get together, Hanna tells stories about her family and her work; she asks Diana questions about the jewelry she has on or where she buys her make-up. Diana talks with Hanna about growing up in Romania, how she was scared to come to the United States and about her adjustment to life in the United States. She is always eager to ﬁll Hanna in on what she has planned for the weekend or the latest gossip. It’s safe to say that Hanna and Diana are friends.

Researchers continue with ongoing efforts to create effective treatments for Alzheimer’s. The medications currently on the market help some people function at a higher level for a longer period of time by increasing levels of brain chemicals responsible for memory. These medications do not, however, alter the course of the disease. Two medications currently under investigation may actually slow the progression of Alzheimer’s by reducing brain inflammation and reducing levels

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of the damaging amyloid protein that deposits in the brain.

“I tell them I have a memory problem and don’t remember names any longer.”

Alzhemed™ has now completed its North American phase 3 trial. Phase 3 means that the drug has passed through initial safety tests and has shown enough promise to be tested in large numbers of people for its eﬀectiveness. The data from this last study are being analyzed now and are likely to be presented in June at the Alzheimer's Associations’ International Conference on Prevention of Dementia in Washington, D.C.

“I hope there is another person in the group who knows the person’s name and uses it. So I just listen and wait.”

Flurizan™ (also called MPC-7869 or r-ﬂurbiprofen) is also in phase 3 trials and aims to lower levels of amyloid protein in the brain. In a phase 2 clinical trial in persons with mild-to-moderate Alz- heimer’s, the medication was well-tolerated and some of the study participants showed evidence of slower decline in some aspects of their thinking.

I was at a reunion and I just looked at everyone’s name-tags. Thank goodness for name tags!”

“I introduce myself (even if we might already know each other) and hope that they do the same.” “I just call everybody ‘honey’!” “I just say ‘Hey buddy, how are you doing?’”

“My wife covers for me by repeating the person’s name in front of me while we’re all talking together.” “If we’re going to a large gathering or social event, I rehearse the names of the people who might be there beforehand. If it’s a family gathering, we go over photo albums. We have a huge family and it’s hard to keep track of everyone!”

These potential “anti-amyloid” drugs are an exciting direction in treatment for Alzheimer’s. We will keep you updated as further study results are made public.

“I engage them in conversation long enough so that something jogs my memory.”

Brainstorming We asked a group of people with Alzheimer’s: “What do you do when you don’t remember someone’s name?”

“I’ve told everybody that I have Alzheimer’s. It’s about as good an excuse as you can get for forgetting someone’s name!”

Here are some of the answers:

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There are many different books available that enable you to share your life story by writing your answers to a series of questions laid out in the book. If you are not comfortable writing, you can have a family member or friend ask you the question and write down your answer as you reply. This provides an interactive experience that often sparks interesting conversation. Questions in these books may evoke specific memories, such as “What was one of your most memorable toys as a child?” Other questions are more philosophical and timeless such as “What kinds of qualities do you look for in a friend?” Questions cover experiences about family, friends, education, work, and spiritual or philosophical beliefs. Not all questions may appeal to you, or you may choose not to discuss some of the topics. But chances are, many of the questions will help to prompt interesting reflections or memories that may otherwise never be shared.

Your Life Story: Easy and Fun Ways to Create an Autobiography Many people with Alzheimer’s or a related disorder have trouble remembering recent events, activities, or information, but retain vivid memories of the more distant past. A memory from childhood may be clearer than the show you watched on television last night. Some people fear that with a progressive memory problem, they will lose these long-term memories and their sense of personal history or identity. It is true that over time, it may become more difficult to remember specific facts or details, but there are many biographical memories, stories, feelings, thoughts, and opinions that you can continue to communicate to others if given a chance. Although everyone’s life has its share of challenging or painful memories, there are also many pleasant ones to recall. It can be a rewarding activity to reflect on the full story of your life and to share it with others. The idea of writing an autobiography may seem overwhelming, but there are some fun and easy ways to share your stories and to record them for a family keepsake. There are a number of formats available to help you and your family record your reflections and personal history in an enjoyable and interactive way.

If your memory loss worsens, it is likely that you will need more assistance from others. Some care may be provided by family or friends who know you well. But it is also possible that new people may enter your life. You may meet friends or aides who are trying to be of help, and sometimes it takes time to get acquainted. These autobiographical journals can help others learn about your personal history, values, likes, and dislikes. Reviewing a

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passage in the journal together might prompt recall or provide an avenue for reminiscence. If memory fails, your journal will serve as a record of your life experiences and it can speak for you.

history that can include photographs, records of signiﬁcant life events, and personal narratives. Order through Ideas ‘R’ Popping by calling 203-221-7917, or emailing info@ideasrpopping.com

There are a number of resources for recording your life stories. One option is through the innovative company, LifeBio, Inc. The company has a number of diﬀerent ways to create your life story. Their Memory Journal available for purchase contains over 250 biographical questions where you can write your answers or have someone transcribe your answers for you. The company also has an audio recording kit that explains how a loved one can interview you and record your stories. You can also write your autobiography on your own web page provided by the company and then print it out to create your own book. This is a wonderful interactive project to do with a grandchild or child who is computer savvy and would enjoy working with you to share your stories. For information on the LifeBio company products, call 1-866-543-3246 or visit the web site at http://www.lifebio.com Another option is Conversations by Susan Goldfein. This booklet provides an interactive photo and story album designed to help the reader create his or her life story. The format of the booklet helps the user recall and record memories spanning from early childhood to the present day. The ﬁnished book becomes a personal

Other references that include the question and answer format can be found in bookstores, often under the journals or genealogy sections. Some popular titles include The Book of Myself by Carl and David Marshall or A Family Legacy for Your Children – Reﬂections from a Mother’s Heart, edited by Terry Gibbs. Give these autobiographical journals a try, and consider working on one with a family member or friend. You might be surprised by how much memory you do still have!

Questions and Answers Q. “My doctor told me that I have ‘dementia’. Is that the same as Alzheimer’s disease?” A. Dementia is a general category for over 70 diﬀerent medical conditions that result in decline in thinking abilities. Areas of thinking that are commonly aﬀected include memory, attention, language, problem-solving, and judgment. The most common cause of dementia is Alzheimer’s disease, accounting for up to 60% of all cases of dementia. Other medical conditions that cause dementia include stroke (also called vascular dementia or

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multi-infarct dementia); Pick’s disease (also called Fronto-temporal dementia); and Lewy-body dementia. Less common causes include Huntington’s disease; Creutzfeldt-Jakob disease (also called Mad Cow disease); and head trauma, among others.

soon another year has gone by. Life can feel a bit routine, and with the onset of memory loss, it may be challenging to try new things. Sometimes, it is up to us to make an eﬀort to break the routine or to open our eyes to the possibilities for discoveries that exist every day.

It is very important to have a thorough diagnostic evaluation of any decline in thinking abilities. Some causes of dementia are reversible, including those due to vitamin deﬁciency, tumor, depression, or a number of other conditions. Your doctor needs to do a thorough evaluation that includes a brain scan, blood work, and cognitive testing (a series of tests that evaluate your memory and other areas of thinking) to determine what is causing your symptoms.

We recently talked to people with memory loss about fun and interesting ways to ﬁnd discoveries in daily life. Many people discussed the enjoyment in seeing new places, doing hobbies or daily activities in novel ways, or discovering new things in their otherwise familiar surroundings. As you read this article, can you relate to any of these comments? How do you ﬁnd a sense of discovery in your daily life?

If you have been diagnosed with ‘dementia’ it is important to ask your doctor what type of dementia you have. The symptoms and treatment can vary between the diﬀerent dementias, and with more speciﬁc information, you can better learn about any available help or treatment.

Taking Walks Exercise is very important for physical, emotional, and mental well-being, and many people report the positive beneﬁts of walking. A walk can also stimulate the senses and lead to many new discoveries. One man says, “When I take my walk each day, I always see something new. I try to look at the gardens or see who is doing what to their house. I also like to see how many animals I can ﬁnd–mostly cats and dogs, or maybe a squirrel, but it keeps me paying attention.”

Volume 12, Number 4: May–July, 2007 Daily Discoveries It is not uncommon for people to reﬂect on how quickly time passes. Days can blend into months and pretty

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Seeing local sights

feeders and has just added a birdhouse to the back yard in the hopes of inspiring a bird to build a nest there.

Some people talk about getting into a bit of a rut with the onset of memory loss. It can be harder to do the things you previously enjoyed, or challenging to develop new interests. One couple discussed a fun strategy for adding a little discovery to their life: “Even though we’ve lived in our city for many years, my wife and I have decided to try to visit a new site in the area each week. It’s good for both of us. It’s amazing how many parks, little museums, exhibits, and odd oﬀ-the-beaten- path places there are to see. We’re having a lot of fun.”

Being with children Children are always growing and changing and some people with memory loss find inspiration and joy in their company. One woman states, “I really enjoy being with my grandkids because they are always changing and each day is like a new discovery for them and for me.” Reading Reading can be a pleasant activity for many people with memory loss. Some are frustrated by the difficulty of tracking text on a page or reading fine print and find that listening to books on tape is more enjoyable. One man says, “It takes longer for me to read than it used to, but I guess I have the time, so it’s OK. Reading is always a discovery because I learn something new or get lost (I definitely get lost!) in the story. But I tend to read short stories or magazines now, so I can usually keep track pretty well.”

Part of this couple’s enjoyment is in reading the local paper each day to look for these new places or events. Although their “discovery” outing is usually once a week, each day they find new possibilities and enjoy making plans for their weekly event. Watching the birds Sometimes, you don’t have to go further than the back yard for discovery. One man discusses the relaxing enjoyment of watching birds and the ongoing discovery of their ever-changing behavior and movement. He says, “We have a lot of bird feeders and I can sit and watch those birds for hours. It’s different every day. New birds come and go and there are different ones in different seasons.” He also enjoys the activity of filling the bird

Taking photos Photography can inspire a sense of discovery. One man states, “I take a lot of photographs because then when I get the pictures developed, it’s like I discover the thing I photographed all over again.” A digital camera is also an

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inexpensive option. You can take as many pictures as you want to download onto a computer where you can view them as a slideshow. Whatever form you choose, photography can help to make you focus on your environment and see things you may normally overlook.

in daily life. What kinds of enjoyable discoveries are you making these days?

MAILBOX Several MDs diagnosed my wife with Alzheimer’s. A psychiatrist friend looked at her and insisted on a spinal tap. The spinal tap determined that she had normal pressure hydrocephalus (NPH). A shunt was installed and she is slowly getting most of her memory back; she is walking normally, and her total demeanor has changed. This problem occurs in 5% of all persons diagnosed with a dementia, but what percentage of dementia patients are really not diagnosed NPH? Can you cover this in your worthwhile newsletter?

New tastes One woman is ﬁnding new discoveries in a routine activity. She says, “I live with my daughter. I don’t cook easily on my own any more, but my daughter and I are cooking together now. We are trying new recipes we have never cooked before- simple things, but each dish has been new and like a little discovery.”

With best regards, Dr. Harry Lewis

Humor Many people with memory loss talk about the importance of maintaining a sense of humor. A good joke or something that gets us laughing can feel like a fresh discovery and lifts the spirits. One man chuckles when he tells his friends in his support group, “Since my memory is so bad I can discover the same thing over and over again!”

NPH is an important, but rare cause of dementia in the elderly. In Alzheimer’s disease (AD), memory loss is usually the earliest symptom, with changes in gait (walking) and incontinence occurring later. In NPH, however, gait difficulties and urinary incontinence are early signs, with thinking abilities affected later. We are glad to hear of your wife’s improvement, since the shunting procedure itself can pose complications. While it sounds like she has had some symptom relief, one study conducted by Savolainen et al. revealed that up to 50% of patients who received shunts for NPH also had biopsy confirmed AD. So

Opportunities for discovery are all around us. In the essays on pages four and five of this issue of Perspectives, you can read reflections from two women with Alzheimer’s who have mastered the art of finding discoveries

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it is diﬃcult to determine the percentage of dementia patients who have pure undiagnosed NPH since the two conditions can co-exist. Nevertheless, you raise an important point that patients with AD are at risk for other disorders that should be carefully evaluated and treated when possible.

‘Let’s do one here.’ Jay states, “Our main target – the people who will beneﬁt most from the forum– are people who have recently been diagnosed with Alzheimer’s disease or mild cognitive impairment who are beginning to cope with that startling and life-shaking reality. We hope each of them will have a care partner to bring along with them.”

Kind regards, Jody Corey-Bloom, MD, PhD Professor of Neurosciences University of California, San Diego

Guest speakers include Dr. Gary Small, director of the University of California, Los Angeles (UCLA) Center on Aging, and David Shenk, author of “The Forgetting.” Breakout session topics include Communications and Relationships; Managing Stress; Redeﬁning Early-Stage Dementia; and Legal Issues. The forum is sponsored by the Alzheimer’s Association, University of Southern California, and UCLA Alzheimer’s Research Center.

“Living Our Lives, Planning Our Futures” A Forum on Early Memory Loss Saturday, October 27, 2007 Skirball Cultural Center, Los Angeles This forum for people with early memory loss and their care partners has been designed by former journalist Richard Bozanich and former architect Jay Smith. Both men have been diagnosed with Alzheimer’s disease.

The No-Good Blues and My Everyday Heroes By Tina Noble

According to Richard, “After my diagnosis, I contacted the Alzheimer’s Association to ﬁnd out about support groups and in that group I met my friend, Jay. During our second meeting we talked about how we both had read in Perspectives newsletter about the New York chapter of the Alzheimer’s Association putting on a conference for people in the early stages of memory loss and other dementias. We said,

I woke up this morning with the nogood blues: Why did I get Alzheimer’s? Why me? And how did I get it? I’m so young—just ﬁfty-ﬁve. I’ve always eaten well, taken good care of my health and been physically active. Why me? I have so many things I want to do! I have children, grandchildren, even two great-grandchildren. I love my family passionately, and I want to help them have happy, full lives. But

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now, instead of helping, I’m facing my single worst nightmare: that I’ll be a burden.

seventy degrees, blue, blue sky, a light breeze, and flowers everywhere. It turns out they’re on their way to see my neighbor’s brother, who is struggling with leukemia. I walk them as far as his door and then turn back toward home. Somehow my heart has been lifted. My lessons for the day aren’t over. In front of our driveway, making their way slowly along our modest suburban street, is another friend, hand in hand with a small girl whose body is horribly twisted. My friend is a professional who helps deaf, speechless children learn to communicate with the outside world. The little girl is Alice. When I first met her a year and a half ago she was a nearly immobile curled up knot of arms and legs. She couldn’t walk, but only scramble along the floor on all fours. She couldn’t talk. One eye was totally blind and the other had only limited sight. She had been on medical support and 24-hour care all her life.

What to do on a blue morning? When I was a kid and got overwhelmed by the world, I’d climb a tree. I’d perch high in the branches of an oak and watch the birds. These days I take a hike. So oﬀ I go, on my usual walk up to the incredible views from Kite Hill. Halfway up the hill, I hear a cheery “Hello! Come walk with us!” It’s one of my neighbors. She’s out with her 75 year-old mother. Her mother, tiny and grandmotherly, has discovered she’s riddled with cancer and has only six months to live. She takes my hand in hers and beams at me. She says, “Tina, what a wonderful day!” And it is:

Her family never gave up on her, believing that a person—some genuine spark of life—was hidden deep within the twisted, voiceless body. On the day of her eighteenth birthday, they decided to try something new. They hired a physical trainer to develop an intensive workout for the slack, bunched muscles in Alice’s body. The workout was a tremendous challenge for her body, but it was even more of a challenge for her brain. And they

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paired it with a crash course in ﬁnger-signing.

Reﬂections By Idel B. McLanathan

At first, the trainer had to move the finger muscles herself, as Alice couldn’t. She used the girl’s hand to form signs, and she did it over and over. Coupled with the training, they began daily field trips together to parks and playgrounds. A miracle is taking place—a miracle of love and hard work—right down the street from my house! I took Alice into my yard, where Bill and I are planting wonderfully fragrant roses. I led her to them. She buried her face in a new rose, just beginning to open, and she lit up with pure joy. She made a soft, indistinct, mumbled sound. I leaned closer and she breathed the word into my ear: “Rose!”

Never give up.

It was about a year and a half ago that I wrote about my feelings in ﬁnding that the illness that I had developed was Alzheimer’s. Now, as then, as in all life, there is a range of feelings that I have about my present life and about my ability to tolerate current experiences. I continue being amazed at the extent of loss of memory and the limitation that I feel when I attempt to produce adequate conversation or writing the words needed at a given time.

Editor’s Note: Tina is 55 years old, has four children, and resides with her husband and family in San Anselmo, California. She was a professor of Anthropology and Psychology. She is an accomplished mountain climber and was also the ﬁrst female paramedic in her county.

I have known forever that my life now and always is largely a result of how I interpret what happens. My current experience is that of frequent head pain, unpleasant dizziness, and signiﬁcant loss of memory. Not so pleasant is it! But that is what makes for my

Today, I set oﬀ back up toward Kite Hill, this time with Alice and her trainer. With Alice in hiking boots, shy but full of life, joking with her ﬁngers as we climbed the hill. It is the 23rd of April, 2007, and the world is full of roses.

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developing a variety of techniques and abilities to conquer the diﬃculty and to ﬁnd delights in attending enjoyable theatre and seeing marvelous paintings in art galleries, etc.

She was born, raised, and still lives, in San Antonio, Texas. Her enduring passions are her family, travel, and reading.

Listening is an Act of Love: StoryCorps Memory Loss Initiative

And when I do go to a major city, one that tempts and delights me, I rest half a day before I do go out, and in truth, I have accepted my need to require a wheelchair. And somehow for me the thrills I experience at art galleries, theatres, dancing programs, and other events have become more meaningful in my life.

By Ann Basting, PhD

I plan to continue ﬁnding enjoyment swimming in the summer, going to movies that I desire all year, searching for the delight of available ballet, lectures, and theater! And in addition, I shall travel more and do so as much as possible.

If you listen to National Public Radio’s Morning Edition on Fridays, it's best to have a few tissues handy. StoryCorps is a national oral history project that encourages everyday people to share the stories of their lives. A Story-Corps interview is a son asking his mother about her childhood. It is a young woman asking her grandfather about his ﬁrst love. It is a couple reminiscing about their 1st or their 50th anniversary. StoryCorps often has a profound impact on both the interviewer and storyteller. Participants receive a recording of their interview to share with friends and family. With permission, another copy is preserved at the Library of Congress’ American Folklife Center so that future generations can hear the stories.

This does not take away the unpleasant “things'' that happen in life. However, they do make them less powerful! And more importantly, I know I am continuing to be the self I have always been. Fortunately we really have much power to create meaning and joy in our lives! Editor’s Note: Idel just celebrated her 87th birthday the way she requested with her two daughters, their families, and her 90 year-old big brother! She was a clinical psychologist and chairperson of the Psychology Dept. at St. Mary’s University.

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In 2006, StoryCorps began working with a team of advisors to make the StoryCorps experience accessible to people with memory loss. StoryCorps’ Memory Loss Initiative (MLI) provides a “tip sheet” for doing interviews with people with memory loss. Since the Memory Loss Initiative began last June, StoryCorps has conducted more than 100 interviews with people with all stages of memory loss.

JoAnn: (laughing) This fellow across from me here. And he’s turned out to be quite a professional too! Later, Bob and JoAnn get more serious. Bob asks her if she gets down about her diagnosis: JoAnn: A little bit…a little bit. Big bit. Bob: A big bit. JoAnn: I’m sad. Bob: What’s making you sad? JoAnn: Just not having control of everything, my thoughts and my actions. And I don’t think it’s fair to you either. Bob: You know I’m going to take care of you don’t you? JoAnn: I know, but you could have some little chick 10 years younger that you could be running around with. Bob: But I have my princess right here. JoAnn: Oh you’re wonderful…

StoryCorps has also produced several of the MLI interviews for broadcast on Morning Edition. The national reach and emotional power of these stories go a long way toward helping ease the stigma of memory loss. In one interview, played for Valentine's Day, an Arkansas couple, Bob and JoAnn Chew, talk about both the challenges of her Alzheimer's and their deep love for each other. The interview spans from lighthearted to deeply emotional. The diagnosis of Alzheimer’s has clearly shaken them. But JoAnn’s quick and infectious giggle, and Bob’s aﬃrming voice are also clear.

In another StoryCorps interview 80 year- old Ken Morganstern was interviewed by his daughters, Bhavani Jaroﬀ and Priya Morganstern. They don’t directly address Ken’s memory loss. Instead, they talk about Ken meeting his wife and their mother. They talk about their family and the rhythm of his days. They talk about how special they are to each other. Priya: What’s your life like now, Dad? Ken: It’s a wonderful life. I get up in the morning, go to sleep at night, and in between eat three meals. What’s wrong with that? They laugh…

Bob: Are you still cooking today? JoAnn: Not today, I have up to this point. But I have Alzheimer’s, the beginning of it, so I hear. And my doctor told me he did not want me to cook. And that was music to my ears! Bob: (laughing) Who is doing all the cooking?

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Priya: It’s a nice thing that it’s so easy to make you happy, Dad. Ken: I’m very much like my father, he was an easy going guy. People used to call him Happy Harry. And I have a lot of his characteristics, I think. Priya: Do you have any regrets, Dad? Ken: I’m sitting here thinking I have no regrets on anything. The important thing is I have a family I love and they are loving people. That’s the biggest thing you can leave as a…… Priya: Legacy. Ken: A legacy, yeah. Priya: I want to tell you, Dad, that I’ve always considered you my guru and teacher. Bhavani: I would say the same. You’ve been a role model for all of your family. People are constantly saying to us how lucky you are to have all of us, and I turn to them and I say: we are because of him. You’ve created such love around you and we want to be with you. Ken: Thank you honey, that’s awfully nice to hear. Priya: It’s the truth. Bhavani: We love you, Dad.

Dimebon may act to reduce brain cell death associated with the disease. Study participants who received the drug stabilized or showed improvement on measures of cognition (thinking), activities of daily living, and behavioral problems for the one-year duration of the study. Dimebon was well-tolerated throughout the entire treatment period with few side eﬀects. Medivation will conduct a larger six-month study of Dimebon next year in the hopes of replicating these encouraging ﬁndings so that the antihistamine can be approved for use in Alzheimer’s disease.

Research Updates There continues to be encouraging advances in medications aimed at signiﬁcantly slowing the progression of Alzheimer’s disease. An American company, Medivation, Inc. recently reported on the outcome of their study of the Russian antihistamine, Dimebon, on persons with mild-to-moderate Alzheimer’s.

Elan Corporation and Wyeth Pharmaceuticals announced their decision to proceed with their anticipated Phase 3 clinical trial of

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bapineuzumab (AAB-001) later this year for the treatment of persons with mild-to-moderate Alzheimer's. This drug aims to provide antibodies against the beta-amyloid protein that forms damaging plaques in the brain of persons with Alzheimer’s. A number of years ago, Elan tried using a vaccine approach that prompted study

participants to produce their own antibodies, but a small group of individuals developed brain inflammation. This modified approach has not resulted in the same complications and holds promise for significantly slowing the progression of the disease.

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Volume 13, Number 1: August – October, 2007 Finding Meaningful Activity MemoryWorks: A Program That’s Good For The Brain by Paulette Michaud, LCSW Poetry Corner Update: Alzheimer’s Association Early Stage Initiative by Peter Reed, PhD Volume 13, Number 2: November-January, 2008 Early Memory Loss Forum: Living Our Lives, Planning Our Future The Dementia Trinity…Sacred and Inviolate Dementia Guide From Health Scotland Cold-Weather Tips Alzheimer’s Association: Town Hall Forums Volume 13, Number 3: February – April, 2008 Living Each Day by Curran Gaughan Employment, Disability, and Dementia: A Survey to Explore the Issues

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Come to Washington DC for the Alzheimer's Association Public Policy Forum Talking to Children and Teens About Alzheimer’s Alzheimer’s Association Safe Return® Partners with Medic-Alert® Volume 13, Number 4: May-July, 2008 The Pleasure of Pets: Roles for Animals in Alzheimer’s Meeting of Minds: A Program for the Body, Heart, and Spirit by Jody Curly, MA

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Volume 13, Number 1: August – October, 2007

diﬃcult to accept help or advice, even from someone who cares about you, it can also be a relief not to face challenges alone. You may not always like it when someone suggests things to do or you may be reluctant at ﬁrst, or worried to take that step. But chances are, when a concerned person makes a suggestion, it can be valuable to keep an open mind and give it a try.

Finding Meaningful Activity The dictionary defines activity as “something that somebody takes part in or does – work, movement, or whatever somebody or something is doing.” By this definition, it would seem that almost any action is activity! With the onset of memory loss and related symptoms, however, many people experience changes in their daily activities. It may be harder to do some previously enjoyed activities or you may find that you need a little boost from others to stay involved. Despite the adjustments to memory loss and associated symptoms, there are many ways to find pleasure and meaning in your life.

Many people with AD ﬁnd enjoyment in physical activity and it is important to try to include physical exercise into your daily life. Movement releases endorphins in the brain that can help improve mood, ease stressors, and increase one’s energy level. Many people continue to enjoy swimming, walking, bowling, playing tennis, or working in the yard. Research conﬁrms the importance of social support in managing stressful times and maintaining good quality of life. It is essential that some of your activity include interaction with others. Although changes in memory or language abilities can make some social situations more challenging, it is important to practice both expressing and listening to conversation. This may

Although there may be changes or adjustments in your social activity, it is also possible that new people can come into your life and open doors to new opportunities. Try to identify the people that make up your community. These people will be instrumental in working with you as you identify and create activity. Although it can be

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be more easily done with others who have the same symptoms. Many people talk about the value of participating in a support group where it’s comfortable and everyone is “in the same boat.” For others, one-to- one interactions are easier to manage than larger groups and spending time with just one or two people at a time may be more meaningful. It may also be easier to socialize around a particular event such as an outing to a park, zoo, museum, movie, play, or concert. This takes the emphasis oﬀ of verbal communication and allows for enjoyable companionship based on a shared experience. Activity with others builds feelings of community and belonging that are important for well-being. One woman says, "My friends don’t really treat me much diﬀerently since I developed Alzheimer’s. I’ve told them about my condition so if I do something goofy, I’ve got a good excuse!”

friends can be preferable. It is often wise to practice with a few small trips to see how you handle travel before venturing out on a longer journey. Consider wearing a "Safe Return" identification bracelet while traveling in case of an emergency. Call your local chapter of the Alzheimer's Association for more information on this helpful program. Sometimes we also need time for peace or solitude. Make time for quiet activity that is both interesting and relaxing. Books on Tape is an excellent resource for those who have difficulty reading and is available through most libraries. Others enjoy watching television or videos, listening to music, doing jigsaw puzzles, drawing and other crafts, or looking through photo albums or scrapbooks. Some find that keeping a journal or occasional notes about their day-to-day experiences is a helpful way to quietly reflect on one's thoughts and feelings.

Many people with Alzheimer's find travel to be a meaningful activity. One man says, “When I travel to a new place, it takes my mind off of all my worries. I see new things and have different kinds of experiences than I do at home. I feel part of something bigger than my usual little world.” While some respond favorably to new places and routines, others find it disorienting or unsettling to be away from home for too long. Shorter weekend-length trips or a visit to more familiar territory such as the home of family or close

Most people enjoy feeling helpful to others, or productive in some way, and caring about others can be an important activity. Spending time with grandchildren, taking care of a pet, or doing a household chore or other task to help your spouse, family, or friend can all be meaningful activities. Others do volunteer work in their community through local churches, health organizations, senior centers, or community service groups.

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had no idea where to send them, so I decided to oﬀer a program at our New York City Chapter oﬃce. I started with one group of 10 people almost a year ago and am now facilitating two groups of 12 participants each, with a waiting list for a third group.

The desirable type and amount of activity will vary from person to person, but in the face of Alzheimer's, there are still many ways to be meaningfully involved in the world around you. Call your local Alzheimer’s organization(s) to see if they offer specific activities for persons with memory loss. If they don’t, offer to help them start something!

MemoryWorks: A Program That’s Good For The Brain By Paulette Michaud, LCSW Every Tuesday and Thursday mornings at the New York City Chapter of the Alzheimer’s Association, people with early-stage memory loss come together to attend MemoryWorks. This dynamic two-hour program engages participants in mentally stimulating exercises designed to keep their brains active and alert. MemoryWorks is also a time for sharing lots of laughter and for having fun! As one woman says, “It just makes my day! It’s fun to do such mentally challenging things together.”

Each weekly session begins with coﬀee, breakfast rolls, and lots of talk as the participants renew acquaintances and get caught up on one another’s news. Then it’s down to business as everyone gets involved doing word games, sentence pyramids, trivia, verbal visual puzzles, and other mentally challenging exercises. A favorite game is “Word Scramble” where the participants try to make as many words as they can from a random selection of letters. For example, from the letters LOMSETIKC some of the words that can be made are: most, tome, tickle, lose, come, kite, and lots. “Isn’t it amazing how many words we can ﬁnd!”, says one man. “We certainly

The ﬁrst session of MemoryWorks took place in November 2006 in response to various requests from clients who were looking for something they could do instead of joining an early- stage support group. Many people came to me looking for a place where they could go to keep their brains as active as possible in spite of their diagnosis. I

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are a smart group when we put our minds to it.”

Fluttering in alarm. Words, treasured friends and Old acquaintances Cower trembling in far-oﬀ corners of my mind Aching to be free.

The overall goal of MemoryWorks is to raise each participant’s sense of self-esteem through numerous opportunities to achieve and to feel valued. All too often, people with memory loss think that they are inferior because of their diagnosis. MemoryWorks demonstrates that this is not the case. The people who come to Memory- Works always impress me with their knowledge and their ability to master some very challenging exercises. As a result, I often ﬁnd myself raising the bar, at the request of the participants, with exercises that have a higher degree of diﬃculty.

Take what solace is at hand. Perhaps when time has run its certain course Then in one delirious explosion Thoughts may still their fears And illusive words burst free. And for an instant, I shall again, be whole. © Laura Gleysteen, 2007

BRAINSTORMING We asked people with Alzheimer’s, “What is a meaningful activity for you?”

But perhaps the best part of all is that MemoryWorks gives people a chance to laugh and to forget about the constant pressures of living with early memory loss. For two hours each week, they can enjoy themselves without reservation in a supportive environment that focuses on their strengths and abilities. Now that’s something each and every one of us could beneﬁt from. Long live MemoryWorks!

Here are some of the replies: “I like to try and make people smile. Just smiling at people throughout the day is a meaningful activity for me.” “I volunteer at my church with their monthly newsletter – lots of folding and stapling, but they appreciate it and that makes me feel good.” “I still go to the gym as much as I can. They have a stretching class for seniors and I also do some weights. Keeps me active and pretty ﬁt!”

Poetry Corner Alzheimer’s By Laura Gleysteen

“I like to read to the grandkids. They love it. They are pretty little so their

Winged thoughts desert me like frightened birds

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books have large print and that’s a lot easier for me to read these days.”

in shaping Association activities and in building greater awareness of early-stage AD through serving as advocates, spokespeople, and advisors. Over a year and a half later, the Initiative continues to grow and build momentum. Major components include the continuation of the Early Stage Advisory Group, awareness-raising, and a series of Town Hall Meetings.

“Walking the dog. I don’t know if it has a lot of meaning to anyone but me and the dog, but we like going to the park where all of the other people have their dogs. It’s pretty entertaining.” “I’m only 52, but I found a support group for young families facing Alzheimer’s and that weekly group is a very meaningful activity to me. Keeps me going!”

Early Stage Advisory Group A cornerstone of the Early Stage Initiative is its Early Stage Advisory Group. In June, 2007, the eleven charter members of the Early Stage Advisory Group completed their terms. The Alzheimer’s Association is extremely grateful to each of the members for contributing their time and energy, helping to focus Association early- stage efforts through sharing their experience and perspectives. The Association recently convened its second panel of Advisors, comprised of fourteen people with early-stage dementia from around the country. This year’s Advisory Group is again a dynamic and vibrant team, with many new ideas and substantial interest in getting involved. Throughout their 1- year term, we anticipate the group will help raise awareness of early stage AD, and will assist the Association in effectively reaching and serving more people affected by the disease.

“Anything with nature involved is meaningful to me. I work in the garden when the weather allows, and I like to walk in the park or the local nursery and just look at the plants. I might see if I can volunteer at the nursery.” “I’ve been working with my daughter to tape record my memories. It’s hard for me to write these days, but I can sure talk! She asks the questions and I do the talking, and we’re having a lot of fun.”

Update: Alzheimer’s Association Early Stage Initiative By Peter Reed, PhD In January, 2006, the Alzheimer’s Association kicked oﬀ its Early Stage Initiative by forming an Early Stage Advisory Group of people with Alzheimer’s disease (AD). The purpose of the Initiative is to directly engage people with AD by giving them a voice

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Awareness-Raising

online (www.alz.org/townhall). All of the input received through the Town Hall meetings will be summarized in a report released Summer, 2008.

Another major strategy of this Initiative is to engage people with AD in raising awareness of the varied faces of Alzheimer’s. Over the past year and a half, the Association has garnered signiﬁcant attention in the public media related to early stage and early onset AD. There were stories in the NY Times, USA Today, the Chicago Tribune, ABC’s Good Morning America, and the CBS Early Show. Many former and present Early Stage Advisors were prominently featured in stories, including Charlie Snyder, Kris Bakowski, Chuck Jackson, Richard Taylor, Spencer Johansen, and Patty Smith. All of these eﬀorts are helping to change the public’s perception of AD and reduce stigma.

Helpful New Resources A new booklet written specifically for people living with the early stages of dementia is now available from the National Institute of Aging's Alzheimer's Disease Education and Referral (ADEAR) Center. What Happens Next? was developed by the members of an early-stage support group at the Northwestern University Alzheimer's Disease Center in Chicago who chose to share their thoughts and feelings because they wanted to help others like themselves. The purpose of the booklet is to offer encouragement to those who have been diagnosed with early-stage dementia and to let you know that you are not alone. Readers will find a series of quotes from support group members about diagnosis, what to expect, how to talk with others about the disease, ways to cope, and more.

Town Hall Meetings Another new facet of the Early Stage Initiative is a series of Town Hall meetings being hosted by the Association. These meetings represent the ﬁrst-ever nationwide discussion about AD by people with AD. The meetings are structured as three-hour facilitated discussions, giving participants with AD the opportunity to share their thoughts and perspectives on such topics as interactions with the medical community, changes in daily life, and engaging community resources. For those unable to attend a Town Hall meeting in person, the Association has launched a “Virtual Town Hall” so people may participate in the discussion

The 12-page booklet also includes a list of helpful organizations that oﬀer written materials about dementia, information about support groups and services, and ways to get involved in research that may help yourself or others in the future.

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Do pass the word on to others who may be interested in this new resource!

Research Updates Exelon Skin Patch Approved Exelon is a medication for people with mild-to-moderate Alzheimer’s that aims to increase levels of the brain chemical, acetycholine and improve memory functioning. Although some people do benefit from the medication, side effects of nausea, diarrhea, or vomiting can occur. Exelon also needs to be taken twice a day which can be inconvenient or difficult to remember. To remedy some of these problems, Novartis Pharmaceuticals (the maker of Exelon) has created a 24-hour skin patch that can be worn to allow a smoother, more continuous dosing of the medication. A new skin patch is applied each day and eliminates the need to swallow a pill twice a day. The patch lessens side effects and has been better tolerated than the pill form of the medication. Care partners also report that the patch is easier to use when helping their loved one manage medications. If you take Exelon, you may want to ask your doctor about the availability of the new patch.

The National Institute on Aging (NIA), part of the Federal Government’s National Institutes of Health (NIH), has primary responsibility for research into the cause of Alzheimer’s as well as research aimed at ﬁnding ways to prevent and treat the disease. The Institute’s Alzheimer’s research program is vital to one of its main goals, which is to enhance the quality of life of older people by expanding knowledge about the aging brain and nervous system. The 2005-2006 Progress Report on Alzheimer’s Disease “Journey to Discovery” summarizes recent Alzheimer’s research conducted or supported by NIA and other components of NIH. The 84-page booklet is beautifully illustrated and provides an overview of Alzheimer’s, current trends in research and research advances, and emerging treatments. A section of the booklet is devoted to the impact of lifestyle, exercise, and diet on preventing and slowing of disease progression. The Progress Report also outlines a number of interesting research initiatives in genetics, brain imaging, and mental and emotional health in aging and Alzheimer’s.

Alzhemed Trial is Inconclusive Over the past few years, there has been some publicity about Alzhemed, a promising drug under investigation that aims to lower levels of the damaging amyloid protein in persons with Alzheimer’s. In late August, the drug company

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Neurochem Inc. announced that the results of its much-anticipated large North American trial of the drug were inconclusive due to problems with analyzing the study data. The drug continues to be tested in European Union countries, however, and we will keep you updated as results from that study unfold.

Gene for Frontotemporal Dementia Scientists have discovered genetic mutations that cause a form of familial frontotemporal dementia (FTD). FTD usually affects people between ages 40 and 64 with symptoms that include changes in personality and social behavior, as well as thinking and judgment. Twenty-to-fifty percent of people with FTD have a family history of this specific dementia. The important discovery of this gene, called progranulin, or PGRN, can influence future approaches to developing therapies for people living with FTD.

Early Results from the Alzheimer’s Disease Neuroimaging Initiative (ADNI) A DNI is a study being conducted across the Unites States and Canada that is using magnetic resonance imaging (MRI), positron emission tomography (PET) scans, measurements of substances in body fluids, and neuropsychological testing to better track the progression of mild cognitive impairment (MCI) and the earliest stages of Alzheimer’s. Some preliminary results of this study are helping scientists determine effective ways of diagnosing the earliest changes in the brain that could indicate a dementia so that future hopeful treatments can be delivered as soon as possible. Scientists are learning more about the use of MRI and PET scans in the detection of early brain changes and may be able to use these tools more effectively in the future to assist with diagnosis, track progression, and evaluate benefits of drugs under investigation.

Volume 13, Number 2: November-January, 2008 Early Memory Loss Forum Living Our Lives, Planning Our Future As another year comes to a close, we can note some exciting progress that has been made with people with Alzheimer’s disease or a related disorder speaking out and making their feelings, experiences, wisdom, and needs both heard and aﬃrmed. Perspectives has reported on web sites, conferences, personal testimonies, written resources, and many national and international advances in empowering people with Alzheimer’s to have a voice in shaping their quality of life and connecting with one another.

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One of the most recent examples of this exciting trend is a conference held on October 27th at the Skirball Auditorium in Los Angeles. Richard Bozanich and Jay Smith met in a support group for people with dementia in August, 2006. They had read an article in Perspectives about the 5th annual conference by and for people with Alzheimer’s in New York and inspired by the prospect of such an event, asked themselves why they couldn’t put together a conference of their own in Los Angeles. Over a year later and as a result of much collaborative planning with the California Southland Chapter of the Alzheimer’s Association, Richard and Jay realized a dream and the extraordinary outcome of some very hard work.

200 people with dementia as well as professionals, family members and those interested in learning more about the issues. Richard and Jay cast a broad net in being inclusive of people with all forms of dementia including Mild Cognitive Impairment (MCI) Frontotemporal Dementia (FTD), atypical dementias, and the “worried well” with the belief that there is more common ground than differences between these groups. They noted that at times, some conference attendees without dementia still struggled with the belief that people with dementia could really be speaking about their condition with clarity and conviction. Speakers defied the old prevailing stereotypes that people with dementia have little insight into their symptoms. The conference had a series of breakout sessions that allowed for a diverse array of topics and issues to be discussed. Breakout sessions included communication and relationships; complementary therapies; current and future treatments; legal and financial issues; living with early memory loss; partnering with your doctor; redefining early-stage dementia; and stimulating the brain.

Richard Bozanish and Jay Smith The conference sold out its capacity to seat 350 people and planners note that a few hundred people had to be turned away from both local and distant regions. The audience included over

In her illuminating article on the conference, Gabrielle Strobel of Alzforum provides some paraphrased samples of quotes from the conference

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participants on a wide range of issues. Participants spoke of challenges in receiving an accurate diagnosis and how frustrating it can be to try to communicate with one’s doctor. They discussed how they coped with the diagnosis once it was given, and how family and friends could assist in helping everyone to cope more eﬀectively. Patience and acceptance were common themes. To read this article and the selected quotes from some of the conference participants, see the excellent Alzforum website at http://www.alzforum.org/new/detailp rint.asp?id=1675.

Center. See http://www.storycorps.net for this wonderful program. A number of conference participants were aﬀorded the opportunity to do interviews with Story Corp during the conference. The Early Memory Loss Forum included an overarching message of a call to action for people with Alzheimer’s disease or a related disorder to advocate for more services, funding for research, and for more programs designed to meet the needs of people in the earlier stages of a dementia. We are truly heartened that Perspectives newsletter and the work of the New York City Chapter of the Alzheimer’s Association could play a role in inspiring Richard and Jay. We hope that in turn, their extraordinary actions will inspire other readers to make their voices heard and to collaborate when possible with regional Alzheimer’s organizations to “live your life and plan for the future.”

During the conference, the National Alzheimer’s Association held a brief Town Hall Forum (see page 7 for more information about these Forums) facilitated by Mike Splaine, Director of the Association’s State Policy and Advocacy Programs. Conference participants were able to voice their opinions and concerns on a number of topics. Richard and Jay both observed that many people were able to voice their thoughts and “feel as if they still mattered.” Richard states, “A lot of people got up who never had a voice before.”

The Dementia Trinity… Sacred and Inviolate Dangerous times my ‘dementia days’, especially when I link a sacred concept of the Christian faith with my meandering thoughts and stumbling ways. Yet it seems so natural to me, so supportive, so comforting, and so true so to do. Three in one, one in three. No longer alone. The persons of my Dementia Trinity: My Love and partner for all time; those who are and will care for me; and me.

The conference also hosted StoryCorps, a national oral history project. Through its Memory Loss Initiative, StoryCorps aims to collect stories from persons with memory loss to be archived at the Library of Congress’ American Folklore

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No place here for selﬁshness or grand-standing. When one hurts we all hurt. When one succeeds we all rejoice. Frustrations and joys bind us as surely as fetters of iron. Sadly we so often experience disunity in this blending of love and care. This escalates as we respond for our own protection and pride. Then we each hurt and feel less than we truly are. The ‘three in one’ breaks into its three parts with each of us is the poorer for it.

Dementia Guide From Health Scotland

The World needs unity, Alzheimer’s International shows unity, you and I living with dementia yearn for unity with self and with one another. Perhaps my concept of ‘The Dementia Trinity’ may hold a feeling of sacredness amongst us all as we move our lives forward together.

Facing Dementia is a helpful booklet written for persons diagnosed with Alzheimer’s disease or a related disorder. Published by Health Scotland, this booklet covers important topics including understanding your diagnosis and symptoms, and how to develop eﬀective coping strategies. It also reviews methods for seeking emotional and practical support, as well as legal and ﬁnancial planning. Each of the nine sections of the booklet give clear and concise information that is summarized by helpful suggestions and practical tips.

Brian McLaughlin Invercargill, New Zealand

Facing Dementia aims to help readers understand more about their dementia and about how to cope with the eﬀects it may have on your life. It also discusses where you can turn to for help now and in the future. The content of this

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publication is pertinent to individuals with dementia all around the world and is not speciﬁc to the region of Scotland with the exception of resource and helpline referral numbers. To access this publication, click on the web site as listed below. If you do not have access to the internet, give the web site to someone who does and ask them to print out a copy of the booklet for you!

enough or forget to turn up the home thermostat to a comfortable temperature and become dangerously cold without realizing it.

http://www.healthscotland.com/uploa ds/documents/FacingDementia.pdf

http://www.nia.nih.gov/HealthInform ation/Publications/staysafe/

Cold-Weather Tips

BRAINSTORMING

Stay Safe in Cold Weather provides a description of hypothermia and its warning signs, how to prevent the condition in the home or outdoors, and case examples of people at risk.

In many parts of the world the upcoming winter months pose signiﬁcant challenges for staying warm and healthy. The National Institute on Aging (NIA) has an informative 12-page publication called Stay Safe in Cold Weather that oﬀers older adults tips on staying warm and avoiding a dangerous condition called “hypothermia.”

We asked people with Alzheimer’s: Do you have any tips to share for managing and enjoying the holidays? Here are some of the answers: “I used to write a note in each Christmas card, but that’s too hard now. This year, I’m writing one letter to everyone that I’ll make copies of and send out. I used to think they were less personal, but now I realize it’s a lot easier!”

Hypothermia occurs when a person’s body temperature drops dangerously low because of exposure to cold. Low body temperature can contribute to a number of serious health conditions that can be fatal, including heart attack, kidney problems, or liver damage. People with memory loss must take extra precautions to avoid circumstances that could lead to hypothermia. Becoming lost or disoriented while outdoors alone in very cold weather could lead to hypothermia. Also, some people may forget to dress warmly

“My husband and I decided that I do better in smaller groups rather than the huge family gathering. We’re going to have a series of smaller events this year so we can spend special time with each section of our large family.” “Avoid shopping malls! I got separated from my wife for a few minutes and it felt like I was lost for hours!”

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“Eat a lot! No matter how bad my memory is, I still enjoy a good meal. I have a sweet tooth, so this is a great time of year!”

any age and have early-stage AD. Since physicians are learning to detect the symptoms of AD earlier and earlier in their course, many people receive an initial diagnosis of early- stage AD and may remain in the early stages for a number of years.

“I can’t manage shopping anymore so I asked my daughter to go with me. We wrote a list and did it all in one day. Couldn’t have done it without her.”

Unlike early-stage AD, early onset AD is defined by the age at which the onset of symptoms occurs. Any person diagnosed with Alzheimer's before the age of 65 is called early onset. People with early-onset AD sometimes have a genetic variant of the disease that runs in families and results in the onset of symptoms much younger in life. Both groups, however, have the hallmark brain plaques and tangles of AD, and the course and rate of progression of AD are not necessarily different across the two groups. Rate of progression and experience of symptoms can vary considerably within all age groups. People with early-onset AD do have distinct challenges. Many have to retire early from productive careers, or struggle to try to raise children who may still live at home. It can be harder to find a peer group for support, and many people in their 30s, 40s or 50s with AD find themselves in support groups or other activities with people many years older. Some communities have developed special early-onset programs for younger individuals and families to try to meet their unique needs.

“Sometimes I just sit back and watch. My wife likes things just so and it used to bother me that I couldn’t be more helpful. But now, I keep her company while she bustles around. She seems happier to just do things her way and I’m less stressed.” “Do something for someone less fortunate than you are.” “Keep it simple and focus on what’s most important – when you stop and think about it, there’s a lot to be grateful for.”

Questions and Answers Q. What is the diﬀerence between early stage and early onset Alzheimer's disease (AD)? A. Early-stage AD refers to the beginning stages of AD when disability is mild. People with early-stage AD have troubles with memory and other areas of thinking, but are still able to function independently or with limited assistance. Age is not a factor in early-stage AD and a person can be of

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Q. I've lost my sense of smell. Is that a part of Alzheimer's disease (AD)?

Alzheimer’s Association Town Hall Forums

A. Some decrease in smell is a normal part of aging. With the onset of Alzheimer's, however, the loss of smell is often more significant. Our sense of smell is regulated by a part of the brain called the olfactory bulb. The olfactory bulb is located next to the hippocampus, a region of the brain where we process memory. The hippocampus and surrounding region is usually the first area to be affected by AD and accounts for the primary symptom of memory loss. Scientists think the olfactory bulb may also be affected in the very earliest stages of AD. As such, the ability to detect and to identify smells can be diminished.

Town Hall Forum, Chicago, Illinois In recent years, the National Alzheimer’s Association has been working towards greater inclusion of the perspectives of persons with Alzheimer’s in the workings of the organization. Long established as an organization to serve care partners and professionals, the Association and its many chapters across the country have also made important advances in working to provide more direct services to those living with Alzheimer’s disease (AD). This has included establishing a National Advisory Committee of people with AD to consult with the organization on pertinent issues and more recently, a series of live Town Hall meetings for people living with early-stage Alzheimer's to voice their needs and concerns to the Association.

Some researchers have examined whether the loss of smell can be one of the earliest signs of changes in the brain that may suggest AD. It is very important to realize, however, that loss of smell can be attributed to many other circumstances. Chronic sinus problems and smoking can also reduce one’s sense of smell. Reduced smell can also lead to reduced taste, and it is important to maintain a healthy diet and season food as needed to maintain appetite and interest in eating.

During these Town Hall meetings that are starting to be staged around the country, participants with Alzheimer’s or a related disorder have the chance to

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voice their opinions on a variety of topics and share their experiences living with symptoms. As a result, the perspectives of those aﬀected by Alzheimer’s will have an opportunity to be voiced and heard by the public as well as staﬀ and of the National Alzheimer’s Association.

and also has a message board and chat room where you can talk with others with Alzheimer’s or a related dementia. If you are not comfortable using a computer, work with a friend or family member who can go on the computer with you and help you express your opinions. Perspectives raised in these meetings and on this Web site will help the Alzheimer's Association learn how to best serve people living with early-stage dementia, so make your voice heard!

Meetings are free-of-charge and usually run as a half-day event. Participants have the opportunity to talk about a number of topics including: ● ● ● ● ● ● ● ● ●

Diagnosis Coping Maintaining relationships Access to resources Stigma Treatment and medication Clinical trials and research Legal issues Community involvement including volunteering and advocacy

Research Updates Alzhemed Clinical Trials End For the past few years, we have kept readers updated as to the status of the drug Alzhemed. Alzhemed held promise for being able to lower levels of the damaging amyloid protein that deposits in the brain of persons with Alzheimer’s disease (AD). After much debate, data analysis, and controversy, Neurochem (the company that makes Alzhemed) recently announced that it is halting development and further testing of the drug because it failed to produce statistically signiﬁcant improvement or slowing of progression in persons with AD. Due to the public’s apparent demand for the drug, however, Neurochem has stated that it plans to start a new company that will market the drug as a nutritional supplement. Because it is a natural product, the compound can be sold as a

Call your local chapter of the Alzheimer’s Association to see if a Town Hall meeting is being scheduled in your area. For those who may not be able to get to a Town Hall meeting, The Alzheimer’s Association has also established a web site where people with dementia and their families can participate in a kind of Town Hall meeting online. The web site has a section where you can share your opinions about the topics listed above

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nutritional supplement without the need to establish safety or effectiveness, but it cannot claim to be therapeutic (meaning it cannot claim to have a known beneficial effect on AD). Alzhemed also goes by the names “trami-prosate,” “3-amino-1-propanesulfonic acid”, or “homotaurine”, but it is not yet clear what the supplement’s name will be when it goes on the market next year.

Spain, and Brazil. Over 100 persons with AD and over 100 care partners participated in the brief phone survey. Survey results fell into three themes: quality of life; access to information and services; and views on AD treatment. Most persons with AD reported an ability to enjoy life and had a positive relationship with their care partner and friends. Care partners reported both burden and considerable satisfaction and reward in their caregiving responsibilities. Most persons with AD and the care partners reported that their physician was the primary source of information. Newspapers and magazines for persons with AD and the internet (for caregivers) ranked second. Families in European countries tended to make better use of their Alzheimer’s Association support services than those in the US. Survey ﬁndings suggest that families are not taking full advantage of services that may be available in their communities.

While this step will make the compound widely available through health food stores and like distribution sites, it is always wise to give careful consideration to any use of supplements especially when a therapeutic beneﬁt is not clear. Consult with your doctor and keep your health care team up-to-date on any decisions you make concerning unregulated or unsupervised use of supplements. Although it is stopping further testing of Alzhemed, Neurochem plans to speed up development of another similar compound, NRM-8499, in the hopes that it may produce more promising results.

Concerning treatment, more than 70% of persons with AD who were surveyed are satisﬁed to some degree with their treatment and feel that the medicine they are taking is helping with their symptoms.

Survey Findings from ADI Alzheimer’s Disease International (ADI) recently announced the results of a survey that explored the needs, challenges, and gaps in services experienced by persons with mild-to-moderate AD and care partners in the US, Canada, France, Germany,

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were due to something psychological or perhaps hormonal. After ruling out those possibilities, doctors informed the couple in May of 2006 that this was Alzheimer’s disease. Many people close to the Powells were in disbelief; they denied the news and told the couple that the doctors must not have known what they were talking about. Peggy and Michael had trouble accepting the diagnosis themselves, and they sought a second opinion by enrolling in the University of California, San Diego’s Shiley-Marcos Alzheimer’s Disease Research Center. A thorough evaluation conﬁrmed the initial ﬁndings: at age 53, Peggy had early-onset Alzheimer’s.

Volume 13, Number 3: February – April, 2008 Living Each Day By Curran Gaughan Editor’s note: Curran is a graduate social work student at San Diego State University in San Diego, California. He recently interviewed Peggy and Michael Powell at their home to hear their story of living with early-onset Alzheimer’s. Peggy and Michael Powell know ﬁrsthand the unique circumstances of earlyonset Alzheimer’s disease. The Escondido, California couple noticed changes in Peggy’s work as a kindergarten teacher nearly four years ago, when activities such as calculating grades and collecting money for a class pizza party became increasingly challenging. Then, after years of dancing in a performance of The Nutcracker, one day Peggy could not remember the steps to the dance. These and other changes initiated an arduous process of discovery for the Powells, who sought an explanation forwhy Peggy, in her early 50’s, was having diﬃculty with her memory.

The term early-onset refers to Alzheimer’s that begins to aﬀect individuals when they are younger than 65. In the United States, up to 10 percent (or about 400,000 people) of those with Alzheimer’s have early-onset. While most public attention goes toward later-onset dementia, developing the illness at a relatively young age creates distinct challenges for the diagnosed person and his or her loved ones. For Peggy and Michael, actions that would typically take place in later stages of life – retirement, long-term care planning – have arrived in advance. Moreover, with two daughters currently in their 20’s, they have faced the added ﬁnancial burden of helping put kids through college

They quickly realized that common assumptions about a younger person experiencing memory loss can create challenges in obtaining a diagnosis and ﬁnding acceptance from friends and relatives. Because of Peggy’s young age, doctors ﬁrst suspected that the changes

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while addressing complex medical and social needs. Although there are some support services available to people impacted by Alzheimer’s, many of these services are not tailored to a younger population.

types of concerns are very common among those with early- onset Alzheimer’s. Fortunately, Peggy has found two programs in San Diego – Out & About, a social and cultural outings program based at the Shiley-Marcos Alzheimer’s Disease Research Center, and Friday Club, a social program combining cognitive stimulation, exercise, volunteer work, and outings at Silverado Senior Living in nearby Encinitas – that are more to her liking. Having always been a friendly, active person, Peggy says, “I like being around the people” during Out & About and at Friday Club. On other days during the week, Peggy and a neighbor go on walks or go swimming at the gym, where she recently set a personal record for number of laps in a row. These activities appear to have eased Peggy’s struggle to adapt to Alzheimer’s: “There’s help,” she says. “It is a terrible thing, but after a while you get used to it.”

Michael, age 58, works full-time as an elementary school teacher, leaving the house at 5:30 each morning and returning home at around 4:30 p.m. Seeking to understand Alzheimer’s as well as possible, he takes interest in educational programs oﬀered in the community. However, when these programs take place in the daytime, he and other working care partners are unable to attend. The Powells have also had to search for meaningful activities for Peggy, who stopped teaching two years ago but wants to maintain a dynamic lifestyle. They realized that adult day centers did not provide her with a peer group of younger, more physically active individuals. These

Although some close friends have drifted away over the past two years, the Powells have made new connections through participating in a support group at their local chapter of the Alzheimer’s Association for early-onset couples. Michael also utilizes several online support networks. He describes the couple’s approach as “living each day.” This suggests both pragmatism– being able to adapt to ever-changing

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circumstances – and a focus on quality of life. When reﬂecting on Alzheimer’s disease, Michael says, “It doesn’t seem to help to think about it as either positive or negative. It comes back to living: what are we doing in this moment? Thinking about it is something else. Thinking about the way it should have been, or what it could have been, or what it was like – it’s like okay, it’s time to be here. We want to live.”

gather data relating to how a diagnosis of AD aﬀects employment and the ability to receive all the beneﬁts that one is entitled to. The survey can be completed with the assistance of a care partner if needed, and can be done online at http://alz.earlystage.sgizmo.com. The Alzheimer’s Association will be collecting survey data thru the end of April and then will release a white paper after analysis of the results. The results may help the Alzheimer’s Association as they advocate to Congress on behalf of persons with AD.

Employment, Disability, and Dementia A Survey to Explore the Issues Although many people with Alzheimer’s disease (AD) or a related dementia are diagnosed in their retirement years, there are some who are actively involved in their work or profession when symptoms begin. The onset of symptoms often results in a period of challenging adjustments in the workplace and eventually the need to retire due to disability. Has the onset of AD or a related disorder aﬀected your ability to continue your employment and receive health insurance or other related beneﬁts? If so, you might be able to provide valuable information about your experience.

Come to Washington DC for the Alzheimer's Association Public Policy Forum May 12-14, 2008 Election season creates excitement and is a time of changing political landscapes. It is also a unique opportunity to increase concern and awareness about Alzheimer’s on Capitol Hill. Lawmakers of both parties are developing their policy agendas in light of the 2008 election, and eﬀorts to improve the health care system are expected to be a top priority issue in the fall. We need to make sure Alzheimer’s issues are part of the debate on health care.

The Alzheimer’s Association’s Early-Stage Advisory Group (comprised of persons with AD who advise the National Alzheimer’s Association) has put together a survey for people with early-stage Alzheimer's in order to

The 2008 Public Policy Forum is just around the corner. Make your plans now to join us in Washington to learn

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how the outcome of the elections will impact Alzheimer’s issues in Congress, meet your lawmakers, and enhance your advocacy skills. The Public Policy Forum is also a great time to meet new friends, network with fellow advocates, and honor those who have been touched by Alzheimer’s at the candlelight vigil. Registration information is at http://www.alz.org/forum. There are 50 free registrations for persons with early-stage Alzheimer’s and scholarship support is available through Alzheimer’s Association chapters.

Talking to Children and Teens About Alzheimer’s

May 12th will also feature the last in a series of national early-stage town hall meetings for persons with Alzheimer’s to speak out about their perspectives and concerns. This meeting will be from 9:00am-noon on May 12th at the same hotel as the Public Policy Forum and is free of charge. For more information, see http://www.alz.org/townhall/meeting s.asp

For many people facing Alzheimer’s or a related disorder, there are younger people in their lives who may be impacted by the effects of symptoms on a loved one. If you were diagnosed at a young age, you may have children still living at home or just getting off to college or employment. If you are older with Alzheimer’s, there could be grandchildren in your life or young extended family members or friends. Young persons may respond to Alzheimer’s in a number of different ways. Some young people may feel closer to you and want to be involved in helping out or having a role in caregiving. Others may feel frightened or stressed by your symptoms and not know how to respond. Some children may not know how to explain your symptoms of Alzheimer’s to their peers

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or may lack educational information themselves.

maintains a website that is written directly to kids and teens and provides easy-to-read information about Alzheimer’s as well as video and written resources at: http://www.alz.org/living_with_alzhei mers_just_for_kids_and_teens.asp.

Your own attitude about Alzheimer’s will likely inﬂuence the response of children to your symptoms. If you are stressed or angry, the symptoms may seem more frightening or upsetting to the young person. If you are able to maintain a sense of humor or openly discuss your memory loss, this will help the younger person be at greater ease. Laughter is always good medicine and often helps to bring people closer.

The Alzheimer’s Foundation of America also has a comprehensive web site devoted speciﬁcally to teens that includes a teen message board and chat room at: http://www.afateens.org/index.html

Many children and teens want to be of help, but don’t know what to do. If a young person wants to be helpful, think of ways he or she might be able to assist you. This could be running an errand or making you a cup of tea. Show your appreciation so that the young person feels valued and useful. You can also think of fun things that you can do together such as creating a photo album or scrapbook, playing games, gardening, or taking walks together.

Teens are very savvy about the internet and acquiring information. Although this can be beneﬁcial, you also want to make sure that children receive accurate information and constructive support. There are a growing number of books about Alzheimer’s written speciﬁcally for children or teens. Check with your local Alzheimer’s organizations or library for helpful resources and recommendations.

New Resources Younger people are often inquisitive and can beneﬁt from open communication. Children can ask very direct questions, while teens may be curious, but a bit more self conscious about initiating discussion. Although there is a great deal of information available about Alzheimer’s disease, there is much less that is written directly to the needs of children and teens. The National Alzheimer’s Association

The By Us For Us Guides By Sherry Dupuis and Jennifer Gillies When Brenda Hounam was diagnosed with Alzheimer’s nearly eight years ago, she realized how little information was available for persons living with early stage memory loss. This omission inspired her with an idea - to develop a series of resources speciﬁcally designed by and for persons with dementia. In

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2006, she approached her peers with her idea and was astounded by their enthusiasm and support. Through Brenda’s contacts at the Alzheimer Societies of Brant and St. Thomas and the Murray Alzheimer Research and Education Program (MAREP) at the University of Waterloo, Brenda connected with persons living with dementia from all around Ontario, Canada to work on what is now aptly called the “By Us For Us” guides. These guides provide tips and strategies for managing daily challenges and enhancing well-being for persons living with memory loss. With the support of MAREP and the Alzheimer Society of Brant, three By Us For Us (BUFU) guides have been developed. They include information gathered from persons living with early stage memory loss through support group meetings, individual contact, and open-ended, mail-out questionnaires. All three guides have been well received in Canada and are being requested by individuals and organizations around the world.

manage and alleviate them. As Brenda Hounam states in the introduction to the guide, “Understanding our triggers and the causes of them can be very diﬃcult but it’s so important if we hope to be able to reduce the incidence of them or learn how to respond to them more eﬀectively”. The third guide, Enhancing Communication, outlines the challenges experienced when communicating with family, friends, and health care professionals. It provides tips on how to enhance communication and emphasizes the importance of using a wide range of communication strategies. The BUFU team is developing two new guides in 2008 to complete the series. What makes these guides so innovative and meaningful is that they are resources developed by and for persons with memory loss and they enable partners in care to gain a better understanding of the direct experiences and needs of persons with dementia. As one of the BUFU team members states in the Enhancing Communication guide, “We hope that through this guide, you can gain a better understanding of our experiences and gain tips on how we can all work together to enhance our lives together.” – Gail Robinet

The ﬁrst guide, Memory Workout, encourages persons with dementia to develop and maintain regular "workouts" for the brain so as to enhance functioning while engaging in enjoyable activities. The second guide, Managing Triggers, outlines the main triggers experienced by persons with memory loss and oﬀers solutions for how they and their partners in care can

Research Updates International Genetics Project The National Cell Repository for Alzheimer's (NCRAD) is a resource facility at Indiana University Medical

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Center in Indianapolis, Indiana and is funded by the National Institute on Aging. The purpose of NCRAD is to provide resources to aid researchers around the world in identifying genes that contribute to Alzheimer’s and related dementias. In order to conduct these important investigations, scientists require genetic material (DNA) from individuals and families who have at least two relatives diagnosed with Alzheimer’s or a related dementia. It is not necessary for study participants to go to the NCRAD site in Indiana. Families from around the United States and any region in the world may be eligible to participate.

or by email at alzstudy@iupui.edu. You can also visit their website at http://ncrad.iu.edu. Response to Dementia Diagnosis Researchers at Washington University in St. Louis, Missouri followed 90 individuals and their care partners who came to the University’s Alzheimer’s Disease Research Center for evaluation. Of these individuals who were evaluated, 69% eventually received a diagnosis of Alzheimer’s disease. Through pre and post diagnostic questioning, researchers found that both persons diagnosed with Alzheimer’s and their care partners felt relief after hearing the diagnosis rather than the feelings of anxiety or depression that physicians might fear. The researchers conclude that it is helpful for physicians to clearly make a diagnosis of Alzheimer’s so that a family can have an explanation for symptoms and can be proactive in seeking possible treatment or in planning for the future.

As part of a family’s participation in this study, you may be asked to provide family history information, documentation of a diagnostic evaluation for Alzheimer’s or a related dementia, and a blood sample. You also may be contacted periodically for additional or updated family information.

Passive Immunization Update

One other way that scientists can learn more about Alzheimer’s is through the careful examination of brain tissue of persons with dementia at the time of death. NCRAD can work with families to arrange an autopsy plan in advance, and will help cover the associated costs.

Elan Corporation and Wyeth Pharmaceuticals have begun recruitment across multiple sites in the United States and Canada for their two Phase 3 clinical trials of bapineuzumab (AAB-001). This treatment, called passive immunization, infuses antibodies directed against the beta-amyloid protein that forms damaging plaques in the brain of

For more information, please contact the National Cell Repository for Alzheimer’s Disease at 1-800-526-2839

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persons with Alzheimer’s. In previous clinical trials, Elan tried using an “active immunization” approach that prompted study participants to produce their own antibodies, but a small group of individuals developed brain inﬂammation. The modiﬁed “passive immunization” approach being used in this current trial has not resulted in the same complications and holds promise for slowing the progression of Alzheimer’s.

you as a person with memory loss and get you immediate help. Recently, Safe Return partnered with the well-recognized MedicAlert program to create a 24-hour emergency assistance program for persons with Alzheimer’s who may be lost or otherwise in need of emergency help. Wearing an emergency alert bracelet can actually enhance your independence by giving the added security of help if needed when you are out on your own. To ﬁnd out more about this valuable program, call your local chapter of the Alzheimer’s Association.

Alzheimer’s Association Safe Return® Partners with Medic-Alert®

Brainstorming

Many people with Alzheimer’s want to maintain as much independence as possible, but also need to address important safety issues. It is not uncommon, even in the earlier stages, to experience episodes of confusion or disorientation. A walk in a familiar neighborhood can suddenly seem foreign if you go oﬀ your normal route. Or coming out of a restroom in an airport, you take a wrong turn and pretty soon, you’re separated from your traveling companion and lost in the crowded hustle and bustle.

We asked people with Alzheimer’s: Have you done anything to make your life a little safer in the face of memory loss or other symptoms? Here are some of the answers: “I still like to garden, but I don’t use all of the electric and gas-powered stuﬀ that I used to. It just moves too fast so I use hand tools now. It’s a lot more work!” “I take a cell phone with me when I walk so my wife can ﬁnd me.”

Since its inception in 1993, the Alzheimer’s Association’s Safe Return program has helped to reunite more than 13,000 people with dementia with their families and care partners. By wearing a speciﬁc ID bracelet or necklace, authorities can help to identify

“My husband got me a Safe Return bracelet a few years ago. I didn’t like it at ﬁrst, but I’m used to wearing it now and it’s probably a good idea.” “I just do whatever my wife says! That keeps me safe from a lot of stuﬀ.”

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form unique bonds that can endure throughout challenging circumstances, including Alzheimer’s disease (AD). Although lifestyles, allergies, costs, or other concerns may make owning a pet impractical or undesirable for some, this article acknowledges some of the beneﬁts of pets for people with AD.

“I keep a nightlight on in the bathroom so I don’t trip in the middle of the night. Sometimes I feel like I can get lost in my own house, so the light also helps to point the way.” “I gave up driving. That was really rough, but I didn’t want to hurt someone.”

Companionship and Purpose For many people, pets can provide meaningful and rewarding companionship. For the person with memory loss, a pet can be a nonjudgmental presence that won’t blink an eye if you tell the same story twice. In his book Partial View – An Alzheimer’s Journal, Cary Henderson writes, “It’s kind of nice to talk to a dog that you know is not going to talk back. And you can’t make a mistake that way. She’s just a companion who’s always there.” For other people with mild AD or a related disorder, a pet provides a satisfying feeling of value and purpose. Since pet care is quite a responsibility, it is usually important to have a care partner involved, as well. Memory loss may limit a person’s ability to remember feeding or grooming schedules, but some people with AD ﬁnd these responsibilities to be rewarding. Interviewed for the video Alzheimer’s Disease: Inside Looking Out, one woman with early-onset dementia speaks about her dog: “Muﬃn doesn’t care what kind of mood I’m in – she

“I just use the microwave now instead of the stove. When I burnt the second teakettle, my daughter said that was enough!” “I don’t think my life is that different with Alzheimer’s. I never was a big risk taker, so it’s not like I’m going to jump off a cliff now.” “I actually did jump off a cliff! It was for my birthday and I went off the cliffs at the beach strapped in with an expert hang glider who did all the work. It was great! It was safe enough because he knew what he was doing. Gotta keep living!”

Volume 13, Number 4: May-July, 2008 The Pleasure of Pets Roles for Animals in Alzheimer’s Many people around the world acknowledge the pleasures and beneﬁts of having a pet. Animals and humans

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doesn’t care if I remember her name. All she cares about is being my friend. I needed a little responsibility, but not too much because there were so many responsibilities being taken away from me.”

memory loss. Regular exercise can improve mood and help one to feel more alert and engaged. Walking can also help to maintain important muscle tone and coordination. The following poem written by Renee French, a woman with early-onset AD, is testimony to the comfort and sense of purpose that can be derived from caring for a pet:

Enhanced Communication Care partners often discuss the challenges of trying to understand the needs and feelings of their loved one with AD or a related disorder. For one couple caring for a mother with AD, they ﬁnd that the cat (as well as discussion with peers in their caregiver support group) is often the key to understanding their mother’s moods. Diane, the daughter-in-law says, “We learn a lot about mom by what she tells us about her cat. If she says the cat is having a bad day, we know she’s not doing so well herself. And if she says the cat needs extra attention today, we know she wants a little company.” A pet may also serve as the catalyst or subject for communication and can stimulate discussion among other pet owners. One facilitator of an early-stage support group says, “The topic of pets is always a big hit because the animal is a member of the family and the feeling of that relationship changes very little with the onset of Alzheimer’s.”

My Little Dog My little dog needs a walk But I stayed in bed all day. I didn’t sleep I wasn’t sick I spent the time Wandering in my mind. For I am determined to locate Where my fragmented life Has hidden me. I rejected the thought To just leave…leave or run away For my little dog deserves his walk He stayed with me all day. © Renee B. French Pets may also help to reduce stress and improve mood. Petting a dog or cat can be very relaxing and can help to slow the heart rate and lower blood pressure. Studies at the University of Nebraska Medical Center College of Nursing suggest that visits by a therapy

Health Beneﬁts Dogs often prompt their owners to take daily walks. Walking is a beneﬁcial exercise and activity for persons with

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dog to a nursing home can ease agitation in residents with Alzheimer’s, especially around sundown when confusion and irritability can peak. A therapy dog can be a calming presence that also promotes social interaction. Some long-term care homes allow residents with AD to bring their pet with them when they move in. This can make the transition from home much smoother and lessen the feelings of loss that can accompany such a move.

with AD. Dogs can be trained to help their owners ﬁnd their way home if they become disoriented on a walk. Some dogs are ﬁt with a global positioning device so they can be tracked with their owners, if needed. Dogs can also be trained to recognize a fall or other crises and can activate a distress button for the owner in an emergency. Although it is labor-intensive to train dogs to provide this type of assistance, a person with mild AD can experience greater feelings of security and independence with the companionship of a trained dog.

Alzheimer’s Aid Dogs Okada is a non-proﬁt, Virginia-based organization that has been providing specialized training for Alzheimer’s Aid Dogs since 1990. Dogs are particularly trained to work with both the person with AD and the caregiver as an active member of the family team. They are taught to recognize the sound of the footsteps of their owner with Alzheimer’s. If the person with AD begins to try to leave the home or gets up in the middle of the night, the dog alerts the care partner and leads the care partner to the person with AD. Okada founder Patti Putnam reports numerous examples of how dogs reduce stress for both the person with AD and the care partner by providing companionship, supervision, and a kind of unconditional devotion.

If you do not have a pet and are considering getting one, it is essential to take pet care requirements into consideration and to make sure that you have a care partner on board to assist if or when it’s needed. Although a pet can provide companionship, activity, and comfort that can assist the whole family in coping with AD, some care partners may be reluctant to take on added responsibilities and these concerns must be carefully weighed and respected.

Questions and Answers Q. I have a hard time with stairs. I can’t always tell how far apart they are or how far down to step. Is this because of Alzheimer’s? A. Many people with Alzheimer’s or a related disorder describe changes in their ability to manage sidewalk curbs, stairs, or uneven surfaces when

Another program, the Alzheimer’s Aid Dog Project, has been underway in Israel to train guide dogs for persons

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walking. This can be due to “visuospatial” problems that result from changes in your brain. By deﬁnition, visuospatial refers to your ability to make sense of what you see (visual) and to accurately judge distance and depth (spatial). Other eye conditions such as macular degeneration, cataracts, or outdated glasses or corrective lenses can complicate visual problems, so it is always wise to have your eyes examined if you or your care partner notice any problems with vision or spatial relationships.

Research Updates Flurizan Update In previous issues of Perspectives, we reported on clinical trials for Flurizan, a drug that had shown promise in Phase 2 trials. Unfortunately, in more comprehensive Phase 3 trials, Flurizan failed to show beneﬁts for reducing symptoms of Alzheimer’s (AD) or slowing rate of decline. Flurizan was aimed at reducing the production of a form of beta-amyloid, the toxic protein that builds up and forms plaques in the brains of those with AD. Most scientists believe that beta-amyloid plays a major role in causing AD and studies with other compounds are underway (see below) that hope to provide more promising results.

Some tips: Try using a walking stick. It can be very helpful for testing depth and distance before taking a step forward. Make sure any stairs inside or outside your home are very well-lit.

Trial of LY450139 Eli Lilly Pharmaceuticals is beginning enrollment of a Phase 3 clinical trial of its promising compound, LY450139. This international trial will enroll 1500 persons with mild-to-moderate AD across the United States, Canada, and Europe. LY450139 works by inhibiting gamma secretase, an enzyme that may be responsible for producing the beta amyloid protein found in brain plaques. By blocking gamma secretase, there is less beta amyloid formed, potentially slowing the progression of AD. Currently available medications treat the symptoms of AD but have not been shown to change the rate of progression.

Use a handrail when possible, or install one if needed. Consider putting brightly colored tape or paint on the edge of each stair to better deﬁne each step. If you are walking with someone else, let your companion know that curbs and stairs can be hazardous for you so you can slow down and concentrate as needed. Wear comfortable and sturdy shoes to lessen the risk of tripping or slipping.

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melatonin improved sleep, some participants on melatonin became more withdrawn. Bright light and melatonin combined provided the best results, so the researchers recommend the use of melatonin only in combination with bright light. Although these ﬁndings are encouraging, it is important to discuss any use of melatonin with your doctor.

Reputable clinical trials are “placebo-controlled” meaning that a percentage of the participants do not receive a placebo instead of the drug. This can make some people reluctant to participate in clinical trials. Although this study is also placebo-controlled, all participants will eventually receive active drug at some point during their study participation. Each person’s participation will last approximately two years and those who are taking approved AD medications may continue taking these medications during the clinical trial.

MAILBOX Editor’s note: The following letter was written by Maryalice Gordon to her friends in the choir of her church. She shares her letter with Perspectives readers in the hope that it will “help other persons struggling with the impairment of Alzheimer’s in any way possible.” She notes that she feels fortunate because “all who have read the following letter have been very accepting and supportive.”

Circadian Rhythms Circadian rhythm is an internal biological clock that helps to regulate our 24- hour sleep and wake cycle. This rhythm can become disturbed in persons with AD resulting in irritability, confusion, too much sleeping during the day, or getting up at night thinking it is daytime. Circadian rhythms are stabilized by light as well as the hormone, melatonin. Findings from a multicentered, randomized trial in the Netherlands support the beneﬁts of light on adjusting circadian rhythms. Residents with AD at 12 care homes were randomized to receive placebo, melatonin, light, or light plus melatonin groups. Exposure to bright light reduced mental decline by 5 percent, depression by 19 percent and problems with daily activity by 53 percent. Although

Dear Friends, What I’m going to share is something personal and I ask for your prayers. I want you to smile and laugh with me. You are my friends and as the song goes, “that’s what friends are for.” In May, 2006, after a battery of tests, I was diagnosed with early-stage of lateonset Alzheimer’s disease (AD). It is considered “late-onset” because I was over 65. Actually I was 70 then. Alzheimer’s is not contagious, but it does tend to run in families. My mother’s sister and father both had AD and that was before anything could be

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done about it. I take Aricept daily which will hopefully slow the progression. Yes, it’s really scary. Of course this is only a preliminary diagnosis as the only sure way to determine AD is with an autopsy. I immediately ruled that out! I’m part of a long-term study at Oregon Health Science University in Portland. Both my husband, Bob, and I attend AD meetings where we can learn coping skills, both as a patient and as a caregiver.

with Bob, and I play solitaire on the computer. I’m surprised that I can type words without looking for the keys. My ﬁngers know what I want! I guess that’s an ingrained part of my long-term memory. I am so thankful for my husband Bob, my daughters, and stepchildren who have been and continue to be so supportive. By the way, this process may take 8-to-10 years or more. This is why I’m telling you now while I can still function quite well with a little help and lots of prayers. Please don’t be afraid to ask me questions. Sometimes I even know the answer!

The results of a battery of psychological tests indicate that I’m very intelligent and have a large vocabulary. That’s the good news! My 12 year-old grandson thinks I’m the smartest person he knows. (He’s so sweet!). The bad news is that I know I’m losing my short-term memory. This is where I ask for your help. Please be patient with me if I look at you blankly when you tell me something that we talked about yesterday or last week. Just repeat the information, and please without the “I told you” or “Don’t you remember?” If we are planning something, please be sure that I write it down, or else give me a simple written note with instructions, date, time, and place. If I can see it, I can do it. If I can’t see it, it doesn’t exist! I may know your name now, but may not be able to recall it later. Nametags help. Please don’t ignore me; I’m still here!

Thank you everyone, Maryalice Gordon Vancouver, Washington

Meeting of Minds A Program for the Body, Heart, and Spirit By Jody Curly, MA Meeting of Minds is a program for people with early-stage memory loss oﬀered through the South Central Wisconsin Chapter of the Alzheimer’s Association. Twice a week, participants engage in a program of memory enhancement and cognitive stimulation activities, tai chi-based exercise, and creative expression. The desire to practice cognitive activities that may help with memory was the

Two mental activities that I can do is play “UpWords” (similar to Scrabble)

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initial draw for several group members, but the tai chi movements and collaborative group poetry creation have become welcome components of the program.

non-rhyming and non-metrical free verse. A theme is presented by the group facilitator or a group member, and the exploration of the theme that takes place in discussion, questions to one another, wonderings, and personal stories is captured by the facilitator and a volunteer and crafted into a poem that is reﬁned and edited so that all feel ownership of it. The common language-related problems that may occur with a memory disorder, such as repetition, metaphorical language, and word substitutions actually make a poem better. It’s a great way to feel successful while expressing thoughts and feelings and connections that may hint at the very purpose of one’s life. (See page 7 for an excerpt of a poem from the Meeting of Minds participants).

Tai Chi Participants Several participants have some trouble with communication and language due to their Alzheimer’s or related disorder. Creative use of words, as poetry calls for, is a way to exercise language abilities while feeling far less pressure to perform in expected ways. Consequently participants experience more freedom, spontaneity, and joy while connecting with others.

The tai chi exercise component of the group is adapted for the specific individual needs of group members and accompanied by flowing music that mirrors the movements and promotes wellness on many levels. It’s an excellent exercise for mature bodies. Tai Chi can improve physical and emotional balance, build leg strength while protecting joints, and open the way to delight in the sheer joy of being in the body. Group members comment on feeling both relaxed and energized following a session, as well as the subtler but definite contemplative effects of the slow, mindful movement. The consistent attention to breathing

The poetry we make is inspired in part by Kenneth Koch (I Never Told Anybody: Teaching Poetry Writing to Old People) and John Fox (Poetic Medicine: The Healing Art of Poem-Making and Finding What You Didn’t Lose: Expressing Your Truth and Creativity Through Poem- Making). It is

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fully and rhythmically not only oxygenates the cells of the body, but creates a sense of internal calm - the experience of being absolutely whole.

Maybe wisdom. I know now there is a possibility that I don’t have all the answers. Whole is in us, and in the stars. Look at the wonder of it: The ﬁrst breath we take here on earth, The inﬁnity of space. God has done a pretty good job.

Whole Whole is a feeling. Whole is feeling not-stressed. Whole is feeling satisfaction. Whole is peace.

Whole is what we are, together. There is nothing that is independent. We are interdependent. We are all connected. We are whole.

Whole is feeling connected: Connected to others, Connected within myself. Whole is feeling I am all together.

By Participants of Meeting of Minds

Sometimes everything feels just right Not so much because things are right But in spite of it all. Sometimes, in spite of How I feel physically, emotionally For even just a moment, everything is alright. That’s whole.

Helpful Resource Taking Action: A Personal and Practical Guide for Persons with Memory Loss

Taking Action serves as both a guide and a workbook for persons with early-stage Alzheimer’s or a related disorder who want to learn coping skills and make proactive choices about living eﬀectively with their symptoms. The writing of the workbook was coordinated by Cindy Bauer, LCSW and Marcia Reish, BSN, of the Alzheimer’s Association’s Colorado Chapter. The 75-page guide is divided into twelve sections that each address common concerns and issues. Chapters include: Talking with Your Doctor; Making Decisions; Communication; Family

Whole is part of a process. It’s a place in a cycle where one is whole, hearty, well. For me, it’s past tense. Whole was the place in the cycle when I was young and athletic When I remembered everything When I was complete physically and mentally When I could do anything I wanted to do. Is there anything that is whole now that I’m older?

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Relationships; Safety; Research; and Understanding Feelings. Taking Action provides educational information and helpful tips, as well as quotes from persons with early-stage dementia. The

workbook format provides questions, worksheets, and space for readers to write their own thoughts, feelings, and coping strategies.

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Volume 14, Number 1: August-October, 2008 Living with Alzheimer’s by Kris Bakowski Brainstorming: Staying Young at Heart Breakfast Club by Donna Velarde, MSW Voices of Alzheimer’s: A Report from Alzheimer’s Association Early-Stage Town Hall Meetings by Peter Reed and Shelley Morrison Volume 14, Number 2: November-January, 2009 Making Sense of Memory Informative Free Resource Announcing Austin’s Camp: Building Bridges Second Annual Kid’s Camp Memories at the Museum: Exploring Art and Alzheimer’s Profile in Advocacy: Support Group Participants Write to Congress Volume 14, Number 3: February – April, 2009 Living Each Day with Alzheimer’s by Phil Reinoehl Announcing Austin’s Camp Building Bridges

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The Brain Fitness Club Principles for a Dignified Diagnosis Volume 14, Number 4: May – July, 2009 The Ongoing Benefits of Physical Exercise Exercise Resource People with Alzheimer’s Discuss: Things That Help to Get Us Through the Tough Times Mind Matters by Julie Lamberti, LCSW

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station, and after ﬁlling my tank, not know whether I was going to work or coming home from work. I tried desperately to hide it and became pretty good at it! But one day in December, my husband and I were out shopping, and he went to a diﬀerent department in the store. The next thing I knew is that I couldn’t remember where I was or how I had gotten there. It was time to fess up.

Volume 14, Number 1: August-October, 2008 Living with Alzheimer’s By Kris Bakowski I think there comes a point in everyone’s life when we pause to reﬂect on the past, realize the present and look to the future. That happened for me at the age of 46. I’d been married for over 20 years, our son was in his freshman year of college, I was happy in my job and my husband was looking forward to retirement. We were all healthy, tried to exercise, eat right, and live an active life.

I sought medical attention and after eight long months of testing, including all of the alphabet soup tests (EEG, EKG, MRI, etc.), blood work, spinal taps, B12 shots and neuropsychological testing, I was diagnosed with Alzheimer’s. It was a relief to me because there was a name to it. Although it is an incurable disease, at least I knew what I was dealing with. My family, however, took a dimmer view. My husband likened it to the Titanic – that the ship was sinking, and he and my son were going to survive and I wasn’t. My son reﬂected that it was like his mother was on death row, but innocent of the crime. Alzheimer’s does not run in my family, or at least that I know of. My parents both died in

However, in the fall of that year I started to become forgetful – which was not like me at all. I had an almost photographic memory and relied on that all my life. I had a very stressful job and worked long hours, so I blamed that for my forgetfulness. I couldn’t remember things like my home phone number, my associates’ names or on bad days, how to get home. I remember that many times I would stop at a gas

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their early 60s of other causes. My father was adopted when he was young, so we had no knowledge of his biological family’s medical history.

can no longer do, and we celebrate the things I can still do. I have good days and bad days. I can no longer work because of this dreaded disease, but I still have feelings. I’m still a wife, a mother, a sister, an aunt and a friend. But this is a silent disease. No one wants to talk about it. They don’t want to admit that they know someone with Alzheimer’s. Many treat you like you have the plague and if they acknowledge it, they will somehow get the disease. That is so hard for many Alzheimer patients. We want people to understand this disease because it is only through educating people that we are going to get the funds we need to help fight Alzheimer’s. I don’t see a cure in my lifetime, but I’m hoping that by the time my son gets to middle age that there will be more available to him if he should inherit this from me. To me, the worst part of this disease is not what it does to me, but what it does to my family. It is not fair for them to have to take this unwanted journey with me. My son once wrote me this note: “I know that you worry about your disease and how it affects our relationship, but I want you to know that I do not feel as if you have changed as a mother. I cherish the closeness of our relationship, and I understand the many forces acting on it. But you have remained unflinchingly loving and understanding, and I am indebted to you for it. I owe you my life. What makes me sad is that although I will always love you – in time

Kris Bakowski After the diagnosis, my first call was to the Alzheimer’s Association in Georgia where I live. My questions ranged from “What’s next?” to “What can I do to help in finding a cure?” The staff at the Association were my saviors during the first days and months of my diagnosis. They guided me and were there to hold my hand through the whole “adjustment” phase. All of that was five years ago, and thanks to the available medicine, I am able to live a somewhat “normal” life; although the definition of “normal” changes every day. I’m definitely not the same person I once was. I’m not as outgoing, not as self-sufficient, not as engaging, and definitely not the life of the party! We’ve mourned the things I

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you won’t be able to remember that I do. So, I’ll say it as often as I can now – I love you.” For that, if for no other reason, I hope a cure can be found.

A. Many people with mild symptoms of Alzheimer’s live alone and function well. At some point, however, advancing symptoms can lead to safety problems and other risks to your quality of life. It will become necessary for you to either have help in your home or move to a new residence that provides assistance. Consider the following if you live alone or are alone during the day due to a working care partner:

The Alzheimer’s Association has been a partner with me. I have been able to feel helpful being involved in advocacy work, media interviews, speaking engagements, and Memory Walks. If you are reading this story, and are just learning a loved one has the disease or perhaps yourself, I would encourage you to seek help from the Association. If not from them, from other sources so you know that you are not alone. My involvement is my “therapy” because I’m hoping that in some small way I can help ﬁght Alzheimer’s.

Food preparation can become challenging. Burnt pots on the stove, spoiled food in the refrigerator, or weight loss from forgetting to eat nutritious meals can all create safety and health risks. Consider a home-delivered meals program. Limit stovetop cooking and use a microwave.

Family, friends, and others with Alzheimer’s help get me through the days. Love and support can come in all forms. Reach out to those who love you. You are not alone. I chronicle my experiences at http://www.creatingmemories.blogspot .com/. There are also forums on the Alzheimer’s Association Web site for you to participate in. It’s going to take all of us to help ﬁght Alzheimer’s.

Many persons with mild memory loss have trouble managing a checkbook and keeping track of bills. Consider having mortgage or utility bills automatically paid through your bank account. Give a trusted family member or accountant power of attorney so he or she can work with you to manage your ﬁnances.

Questions and Answers Consider signing up with an Emergency Alert program. If you fall and injure yourself or have a medical emergency while alone, you can get immediate assistance by pressing a button on a special wristband or necklace. Contact

Q. I’m 70 years old and live alone. I was diagnosed with Alzheimer’s a few months ago and my kids think I should move to a retirement home. Is that really necessary? I’m ﬁne on my own.

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your local hospital for the programs in your area.

others and have some safety networks in place. Contact your local chapter of the Alzheimer’s Association or senior center to see what programs, activities, and services may be available in your community so you can maintain independence while being realistic about safety and symptom management.

Memory loss often makes it challenging for people to manage medications. This is a considerable safety risk for people who live alone or have to take medication during the day when their care partner is out. Purchase a pill organizer at your local pharmacy. Have someone work with you to ﬁll the container for the week so you can keep track of your medications.

Brainstorming Staying Young at Heart In a recent support group meeting for persons with memory loss in San Diego, participants talked about how they stay “young at heart” despite their symptoms of Alzheimer’s. As you read their comments, you might want to ask yourself how you stay “young at heart.”

At some point memory loss or other symptoms will interfere with your ability to drive a car. Many seniors or others with various medical disabilities face this challenge. Consider how you will get around if you can no longer drive. You may sell your car, eliminate your insurance costs, and put the money into a transportation fund to hire a driver. You can also explore any senior transportation services in your neighborhood or through local churches or senior centers.

“I walk by the ocean and dig my feet in the wet sand.” “I sit on the back porch with my dog and we watch the cats and birds in the yard.” “I stay in bed in the morning as long as I want!”

Living alone with memory loss puts you at risk for social isolation. This may also be the case if you are at home alone all day. It may be harder to keep track of appointments on your calendar or to do activities you previously enjoyed with others. Among the beneﬁts of a retirement community is the built-in activities, meals, transportation, and community. If you stay in your home, it is important to stay connected with

“I was a high school swimmer so doing laps now at the YMCA makes me feel young at heart except I get out of breath easier!” “Anything having to do with chocolate keeps me feeling young at heart.”

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“Being with children. I’m drawn to them.”

This protein is found at low levels in people with Alzheimer’s, and may be helpful in reducing the amyloid plaques associated with the disease.

“A good cup of coﬀee, tea or Schnaps gives me a boost.”

The National Institutes of Health is currently conducting a large clinical trial with DHA in persons with Alzheimer's. It is not yet clear whether DHA can have an impact once symptoms of Alzheimer’s are well underway, but the current trial hopes to shed light on this question. Dr. Cole is also hopeful that a large-scale prevention trial can be done in the future using ﬁsh oil at the earliest stages of Alzheimer’s where it may have the most beneﬁt.

“I search out old items on the computer and re-read about history. It takes me back.” “Music makes my heart sing. I love classical music especially.” “I played football in college. Sometimes it’s like being there again when I watch a game on TV.” “Sometimes I feel like a big kid. Every day is a new day with new discoveries because I can’t remember anything! I laugh about it and that keeps me young at heart.”

In the meantime, while we await the ﬁndings from the current clinical trial, research supports eating a few helpings of cold-water ﬁsh (especially salmon) each week to help maintain healthy brain function. Vegetarian sources of DHA are available through nutritional supplements found in health food stores.

Research Updates Fish oil continues to be under investigation for prevention or treatment of Alzheimer’s. Fish oil contains DHA, an omega-3 fatty acid that is essential in human nutrition and healthy brain cell function. Greg Cole, professor of medicine and neurology at the University of California in Los Angeles (UCLA) and associate director of UCLA’s Alzheimer Disease Research Center, and his colleagues recently determined that the presence of DHA near neurons (brain cells) increases production of a protein called LR11.

Breakfast Club By Donna Velarde, MSW The Breakfast Club is a socially-based program for people with early-tomoderate stage memory loss and their care partners oﬀered through the Orange County Chapter of the Alzheimer’s Association in Southern California. The Breakfast Club provides a relaxed atmosphere where everyone

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has an opportunity to enjoy discussions and engaging activities together. While there is beneﬁt to participation in separate activities designed for persons with AD or their care partners, the Breakfast Club provides a unique opportunity for couples to enjoy socializing and learning together. As one participant states, “It is much more fun to be able to stay together with my spouse rather than in a separate group.” The group meets weekly for two hours and brunch-type snacks are available throughout the meetings. The Breakfast Club also takes ﬁeld trips to destinations chosen by the group.

participants, or newspaper/magazine articles brought in by group members. Other activities include sharing of new and past experiences, family traditions and customs; bringing in and sharing crafts, photographs, skills, or hobbies; singing familiar songs from the past; and celebrations of birthdays and special occasions. Seasonally, the group discusses the signiﬁcance of certain holidays, exchanges small gifts, and shares memories. And, there is always so much laughter! Twenty minutes of light exercise follows and usually involves chair exercise, lifting “weights” (water bottles), or practicing balance movements. Guest speakers to the Breakfast Club have included an instructor of Laughter Yoga, and entertainment has been provided by the Dancing Grand Daughters of one of the facilitators. Discussions are ongoing about future guests. The group also decides which activities and outings are of interest. Most recently, they visited the traveling Terra Cotta Warriors exhibit from China. Other excursions have included two botanical gardens, and the local zoo with more outings to other destinations being planned.

New friendships and lots of laughter are two major components that have made this group so successful. The group began less than a year ago with 4 participants, and now has 18 consistent participants. Group members cite the friendly, relaxed atmosphere and the socialization as reasons to attend every Tuesday morning. One participant speaks for many when she says, “We are able to share problems and feel lighter when we leave.” Upon arrival at the meeting, group members help themselves to snacks while engaging in lively conversation. When everyone is seated, and after check-in, the group engages in brain-stimulating educational games and activities, such as discussions regarding various subjects that have been researched by designated

Group participants have expressed repeatedly that The Breakfast Club meetings are very important to them. One participant sums up the experiences of both persons with Alzheimer’s and their care partners:

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“We always go away from the group with something positive.”

this project, three general topics were identiﬁed for discussion: Interactions with the medical community; Changes in daily life; and Engaging community resources.

Voices of Alzheimer’s: A Report from Alzheimer’s Association Early-Stage Town Hall Meetings

More than 300 people with early-stage AD participated, sharing their thoughts and perspectives on the experience of living with the disease. The results shed light on several important directions for empowering persons with AD. The following summary of themes is a brief review of the perspectives that were shared.

By Peter Reed, Senior Director of Programs, and Shelley Morrison Bluethmann, Director of Early Stage Initiatives, of the Alzheimer’s Association National Oﬃce As many as half of the estimated 5.2 million people with Alzheimer’s disease (AD) in the US are in the early stage, or beginning, of the disease. They have a unique opportunity to play an active role in their own decision-making and to participate in planning their future. Based on their testimony, they seek to be deﬁned not by their memory loss or functional decline, but by their remaining abilities.

The Stigma of Alzheimer’s and its Impact on Relationships The main theme inﬂuencing much of the discussion is that people with early-stage AD are misunderstood because of myths and misconceptions about the disease and stigma associated with having AD. People with early-stage AD repeatedly point out that they are living with Alzheimer’s, not dying from it.

Between July 2007 and May 2008, the Alzheimer’s Association hosted four regional meetings, launched an online “Virtual Town Hall,” and Association chapters coordinated local town hall discussions in communities around the country. Each of these meetings used a common agenda to elicit feedback from participants with early-stage AD on speciﬁc topics and included open discussion. Based on emerging evidence in the ﬁeld, guidance from the Association’s national advisory group of people with early stage dementia, and discussions by the team convened for

Negative associations with AD have a direct impact on the relationships between people with AD and many people with whom they come into contact. People described changes in interactions with their family and friends, colleagues and coworkers, and with the medical community. People with early stage AD seek to work together with their communities to

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improve communication, positive involvement in life, and an acknowledgment of their ideas and contributions. Many want to be active in advocacy and awareness-raising in order to diminish stigma and enable the continuation of their personhood. One participant states: “I’m not ashamed of having Alzheimer’s. All of my neighbors are aware I have a problem and there is no ridicule, no stigma, and so I wish we would get it out of our minds that we’ve done something – that we need to go under the table and hide.”

appropriate community support services. Still, they acknowledge the benefit of the services that are available and in which they have participated. Specifically, they highlight the importance of finding support, and seek support groups to connect with others that have shared experiences. They also describe the need for more services to educate them about AD, what to expect, and new developments in available research and emerging treatments. Sources of Major Concern in Daily Life

Dissatisfying Interactions with the

People with early-stage AD recognize the changes in their independence and functional abilities. They fear the continued decline in independence and the prospect of becoming increasingly reliant on loved ones and other care providers. They hope that recognition of these fears will lead to their inclusion in decision-making and planning for the future. In the words of one participant: “I’m not incapacitated and I don’t want to be treated as though I can’t be trusted to do things. It’s a balancing act that for me, is constantly being navigated.”

Medical Community People with early-stage AD (especially younger-onset AD) report signiﬁcant challenges in obtaining a diagnosis and follow-up treatment. They feel burdened by diagnostic testing procedures. Once AD is identiﬁed, they seek more complete information about what to expect and the steps that can be taken to enhance their quality of life through available medications and community resources. One participant echoed the concerns of many and said, “Healthcare professionals need to take us more seriously and most of all, listen to our questions and concerns.”

Desire to Stay Involved and Make a Diﬀerence Perhaps above all else, people with early- stage AD want to be heard and ﬁght to remain engaged as contributing members of their community. They want to be included in everyday

Uncertainty about Availability of Support Services Many people with AD have limited knowledge about accessible and

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activities and remain social. They hope to have the opportunity to take advantage of their retained abilities by raising public awareness and advocating for change. One participant states, “We need to educate and we need to let the National Institutes of Health (NIH) know to keep being funded and we need the money and we need the research and the medications. We need to ﬁght, so please keep your voices going and keep pushing and keep moving.” Whether in their community or with federal policy makers, they hope to tell their story and in doing so, put a “real face” on AD. When people with AD can continue participating in meaningful activities, then there is less focus on being deﬁned by their symptoms. The views expressed in the Town Hall Meetings provide a much-needed perspective on the experiences of those with mild AD. These individuals retain many capabilities, want to remain as independent as possible, and seek ways to contribute to the world around them. They hope to partner with others to express themselves and to remain the people they have always been, despite their symptoms.

Volume 14, Number 2: November-January, 2009 Making Sense of Memory For most people with Alzheimer’s or a related disorder, memory loss is one of the first signs of a problem. While some slowing of memory formation and recall is a normal part of aging, the memory loss of Alzheimer’s affects daily activities such as keeping up with appointments, maintaining a checkbook, or cooking a complex meal. But why can some things be remembered and others seem to dissolve almost immediately? There are many types of memory and multiple areas of the brain involved in the creation and storage of memory. Sensory Memory Throughout our daily activities, we experience thousands of sensations through our sight, smell, taste, sound, and touch. These sensations are briefly retained in our “sensory memory.” Many sensory memories are fleeting, lasting only a few seconds. Only information that we pay closer attention to (listening intently to the words of a song or looking closely at a photograph) is then transferred to another level of memory where it may be better preserved. Many people with Alzheimer’s can be overwhelmed in situations with too much sensory stimulation (loud parties or crowded shopping malls, for example). The

Going forward, there is a shared responsibility -- for people with or without AD-- to preserve their humanity and work toward a world that welcomes the contributions of people living with AD and facilitates their participation in a variety of ways.

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brain can’t process the information as eﬀectively to get it into memory.

includes memory for the meaning of words, social customs, and the purpose of various objects and how they work (“semantic memory”).

Short-Term Memory If a person is not overly distracted and can pay enough attention to information that is received from the senses, the information moves into “short-term memory.” This is a temporary holding area (perhaps only seconds) in the brain where information is stored brieﬂy before moving into long-term memory.

Procedural memory includes “how to” knowledge like the ﬁnger movements required to play the piano or the actions necessary to ride a bicycle. Procedural memories are acquired through repetition over time (remembering how to walk or how to open a door). These kinds of memories can be accessed without a conscious eﬀort to remember.

Working Memory

Brain Regions Involved in Memory

Another way that the brain temporarily holds information is through “working memory.” This type of memory is used to hold information for a short time while the brain processes it. Working memory is used in processes that require reasoning, such as retaining the meaning of several sentences in order to understand a paragraph, or performing and retaining all of the steps of a task in order to accomplish it.

Scientists believe that no one area of the brain is solely responsible for forming and storing memories. Many areas are involved, each with varied responsibilities for perceiving and processing information, and for storing it as different types of memory. New memories are initially stored in the hippocampus, which is one of the first areas affected by Alzheimer’s. Changes in this area affect the brain’s ability to take in new information and retain it for storage.

Long-Term Memory Long-term memories can last anywhere from a day to many decades and are called either “declarative memories” or “procedural memories.” Declarative memory includes all memories that are consciously available to us when we try to remember. This type of memory includes memories of speciﬁc events (“episodic memory”) such as the birth of a child. It also

Another region of the brain, the amygdala, sits near the hippocampus and is involved in the emotional aspects of memory formation and storage. Was an event associated with pleasure, pain, or fear? The strength of the emotions involved in an event may help to

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determine how strongly that event is remembered.

Break tasks down into small steps. It is easier to remember how to do something when it is done one small step at a time. Finish one step before starting the next.

The cerebellum is also involved in memory, speciﬁcally procedural memories. The cerebellum regulates balance and coordination and along with brain structures called the basal ganglia, is in charge of forming and storing memories involving movement, such as how to swim or dance.

This article is modiﬁed and revised from: “Findings from Memory Research Continue to Fascinate.” Connections Vol 15, No 3.

Memory Strategies

Informative Free Resource The National Institute on Aging (NIA) has a new edition of Alzheimer's Disease: Unraveling the Mystery, an illustrated 80-page book written for people with Alzheimer's disease (AD), their families, health care professionals, students, and others interested in Alzheimer’s. This update to the 2003 edition helps readers understand AD, its impact on individuals and society, and research advances to prevent or diminish the eﬀects of symptoms. The new edition:

Although Alzheimer’s can aﬀect all forms of memory, these strategies can help with retaining information: Pay attention when you are trying to remember something. Too much stimulus (trying to read while the TV is on) can interfere with attention and memory. Practice repetition. When you are trying to learn a new activity, do it over and over until it becomes familiar.

• describes the basics of the healthy brain

Use multiple brain functions to help with remembering. When you watch a TV program, talk about it with someone afterwards. This stimulates multiple areas of thinking and can help with memory.

•focuses on changes that occur in a brain aﬀected by AD • highlights ﬁndings from recent NIAfunded research into the causes of AD, new developments in diagnosis, and the search for new treatments

Get adequate sleep. Sleep is required to “consolidate” memories, a process that moves short-term memories into longterm storage.

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•addresses issues of concern to AD care partners and families.

the route is familiar and I’m more likely to ﬁnd my way back home.”

The book also includes a glossary, a comprehensive list of organizations oﬀering more information, and a list of recommended reading.

“I take a nap every afternoon. I kick oﬀ my shoes at about 2:00 and get some rest. I wake up refreshed and my mind feels clearer.” “I make a point of watching the nightly news. It’s not always fun, but my husband and I talk about the issues that they discuss and I think it’s good for my brain.”

Brainstorming We asked people with memory loss: Are there any daily routines that are helpful to you? Here are some of the replies: “First thing in the morning I get on the treadmill and I also do medium weights. I make sure to get exercise every day.”

“I live alone with my little dog. Every morning I feed her at the same time as I take my medications. If I don’t do it then, I may forget to feed her or feed her twice. And she won’t tell me if I’ve already fed her. She’ll just eat again!”

“I put my house keys in the same place and then if I have to go out and I want to remember to take something with me, I’ll put it with the keys so I don’t forget it.”

Mailbox Dear Editor, I always get a boost from Perspectives. Even the poignant personal journeys are positive (like Kris Bakowski’s from the last issue) because they show people struggling to communicate and “be real” about a disease with which they or their loved one have been diagnosed, just as people with cancer might be struggling. Too often, as I work with caregivers of persons diagnosed with dementia, I observe denial and anger by the person diagnosed, combined with one or more reactions from their families that indicate communication has been a problem in the relationship over time and certainly is not going to

“Every day I remember to wake up. That’s an important routine!” “I do the laundry on a certain day of the week. That way it stays manageable and I can actually get it done.” “I have a routine about where I put my tools because if I don’t put them right back after I use them, I’ll never ﬁnd them again!” “My wife and I take a walk every morning and we usually go on the same route. That way, if I go alone sometimes,

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get better when faced with this diagnosis. So, I am grateful to read about another approach – it seems so hopeful. I have suggested Perspectives to clients.

to camp this coming summer and invite others to join them and the camp staﬀ. Camp Building Bridges is now under the umbrella of the Oklahoma and Arkansas Chapter of the Alzheimer’s Association and will be held at Camp Takatoka in Chouteau, Oklahoma, about 45 miles southeast of Tulsa. The cost of camp is $600 plus a $50 registration fee. Scholarships are available. Last year, several Alzheimer’s Association chapters helped young people from their areas with transportation costs and families are encouraged to contact their local chapter for assistance if they do not live within driving distance of Oklahoma.

Sincerely, Kathy Dolan Family Caregiver Support Specialist Skagit Senior Information and Assistance Burlington, Washington

Announcing Austin’s Camp: Building Bridges Second Annual Kid’s Camp July 19-25, 2009 Chouteau, Oklahoma

The camp is speciﬁcally organized for 13- to-16 year olds who have a parent or grandparent with early-onset dementia (dementia diagnosed before age 65).

Dear Readers, Austin’s Camp: Building Bridges is the realized dream of Tracy Mobley, a mother diagnosed with early-onset dementia who was concerned about the limited emotional, social, and educational support available to her young son. Last year the idea of a camp for teens of parents or grandparents with AD was piloted and turned out to be a great success. Austin, who is now 14, and nine other teens, experienced the ﬁrst camp at a YMCA camp in Oklahoma. There, they had six days away from home to have fun together, share support, and have information about dementia directed speciﬁcally to their needs and concerns. The teens are eagerly looking forward to a return

Memories at the Museum Exploring Art and Alzheimer’s

Fall 2006 marked the beginning of a rich collaboration between the University of California, San Diego’s Shiley-Marcos

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Alzheimer’s Disease Research Center (ADRC) and the San Diego Museum of Art (SDMA). Inspired by an innovative program at the Museum of Modern Art in New York called “Meet Me at MOMA”, Lisa Snyder, clinical social worker at the ADRC, trained an enthusiastic group of SDMA docents to conduct tours for men and women with Alzheimer’s. During their training, docents were given an overview of the symptoms of Alzheimer’s and speciﬁc ways of facilitating discussions with people with memory loss that might engage their visual, verbal, and mental abilities. The program, entitled Memories at the Museum, oﬀers one-hour tours for people with Alzheimer’s or a related disorder four times a year. Separate simultaneous tours are provided for an accompanying family member or friend or the companion can accompany their partner with memory loss in their group if they would prefer to share the experience together. The program is entirely free of charge.

Memories at the Museum has also proven to be a rich experience for SDMA docents. Ruth Broudy, SDMA Manager of Docent Programs, recently followed a docent-led tour of guests with Alzheimer’s through the exhibition of the painter Everett Gee Jackson and recalls how fulﬁlling it was to hear memories come alive for one of the participants who had known the painter personally when he was a professor at San Diego State University. The participant clearly discussed fascinating details about Jackson’s life. Broudy states, “The program helps to bring out the uniqueness of each person with memory loss. Each of these individuals is someone very special and we tend to forget that when someone has Alzheimer’s.” In another tour, a daughter began to cry as she observed her mother discussing one of the exhibits. Vas Prabhu, SDMA Director for Education and Interpretation who was observing the program, handed her a tissue and expressed concern. The daughter told Vas, “It’s amazing to hear my mother talk about Post Impressionism and her experiences in seeing these works in New York City when she was a young woman. I’m her primary caregiver and I am so caught up in the day-to-day….it feels so good to know that she can access these happy memories!”

Joe LaBonte rarely misses a tour and states, “Wiley Ferguson and the other docents bring the paintings to life. The experience brightens the horizon and you feel better about things.” Joe’s wife Donna notes the beneﬁt of separate docent-led groups as it aﬀords each their own pace. She states, “It’s a wonderful social outing and it’s very educational.”

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The New York MOMA has inspired other museums around the country to begin similar programs. Perhaps you can inspire a museum in your area to join in. It can be a creative and memorable experience for all involved.

40’s. Until now, research into inherited early-onset Alzheimer's was hindered by the rarity of the condition and geographic distances between patients and research centers. DIAN is designed to overcome those challenges. "This collaborative, international eﬀort will link a network of research sites in the United States, England, and Australia to family members of people with these rare forms of Alzheimer's," said NIA Director Richard J. Hodes, M.D. "By sharing data within the network, we hope to advance our knowledge of the brain mechanisms involved in Alzheimer's, eventually leading to targets for therapies that can delay or even prevent progression of the disease." The study is being led by John C. Morris, M.D., director of the Alzheimer's Disease Research Center at Washington University School of Medicine in St. Louis, Missouri.

Research Update International Study to Investigate Early Inherited Form of Alzheimer’s The adult children of people diagnosed with inherited Alzheimer's disease (AD) are the focus of a new study to better understand the biology of the disease. Researchers are seeking 300 volunteers with a biological parent with a known genetic mutation causing rare and typically early-onset forms of AD to join the Dominantly Inherited Alzheimer's Disease Network (DIAN) study. This is a six-year study funded by the National Institute on Aging (NIA), part of the National Institutes of Health (NIH). The scientists hope to identify the sequence of brain changes in early-onset Alzheimer's even before symptoms appear and by understanding this process, to also gain insight into the more common late-onset form of AD.

Each study participant will undergo the same assessments, including genetic analysis and cognitive testing. Researchers will build a shared database of blood and cerebral spinal ﬂuid samples and neuroimages, including MRI and PET amyloid protein images. These assessments, samples, and images should enable researchers to determine the type and sequence of changes in the brain in early- onset inherited Alzheimer's.

The vast majority of people with Alzheimer's have the late-onset form of the disease, in which symptoms of memory loss become evident at age 60 or older. Less than ﬁve percent are diagnosed with the inherited form of AD, sometimes as early as their 30’s or

"While three mutated genes

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--amyloid precursor protein (APP), presenilin 1 and presenilin 2 -- are known causes of inherited early-onset Alzheimer's, DIAN researchers now hope to ﬁnd the biomarkers, or indicators, that herald the disease at its earliest stages," said Marcelle MorrisonBogorad, Ph.D., NIA Division of Neuroscience director. "By closely monitoring the biomarkers of the DIAN volunteers, both those with and those without the mutated genes, we should gain insight into the underlying pathology behind both early and late-onset forms of the disease."

ﬁeld. Support group members chose to use the word “dementia” throughout this letter to describe the many diseases that aﬀect the brain including Dementia with Lewy Bodies, Vascular dementia, Alzheimer’s disease, and Frontotemporal dementia. Please feel free to use this letter as a template to write to your own local representatives. We hope that by sharing this letter with similar groups and individuals, others will be encouraged to speak out about this important health issue, and become empowered to advocate for increased awareness and support for dementia research.

People interested in participating in the DIAN study should contact DIAN Global Coordinator Angie Berry at Washington University at 314-286-2442, or go to http://www.dian-info.org. Study participants must be aged 18 or older.

Since the time this letter was authored and sent out, Senator Barack Obama has become President-Elect Barack Obama. Kristen Pavle, Support Group Co-Facilitator November 10, 2008

Proﬁle in Advocacy: Support Group Participants Write to Congress

Dear Senator Obama: I am one of the 7.5 million people with a diagnosis of dementia and a member of the memory loss support group at Northwestern University. Dementia, including Alzheimer’s disease, is a devastating and irreversible loss of mental functioning that aﬀects my daily life. I am writing to share with you the importance of funding dementia research and increasing public awareness of this disease.

The Early Stage Memory Loss Education and Support Group at Northwestern University in Chicago, Illinois wrote this letter to their local senators and congressmen. This advocacy was inspired by their desire to change the public perception and stigma surrounding dementia, to enhance resources available to those coping with memory loss, and to increase funding for continued research in the

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Every 71 seconds, a person is diagnosed with dementia in this country. People are living longer than they ever have and age is the greatest risk factor for developing dementia. Nearly half the population over 85 years has some form of dementia. By the year 2050 the number of persons with dementia is projected to jump to 16 million. These alarming statistics reveal the magnitude of this health crisis and the importance of acting NOW.

Sincerely, Members of the Early Stage Memory Loss Education and Support Group at Northwestern University

Volume 14, Number 3: February – April, 2009 Living Each Day with Alzheimer’s By Phil Reinoehl

I am excited about the new dementia research that focuses not only on drug trials but also on ways to improve my quality of life. This gives me hope that one day there will be a cure for future generations. Without your help to increase funding for research we are further from reaching this goal; the longer we go without a cure the more this disease will cost our country financially. If you know someone with dementia, you know how important it is to find a cure. I urge you to support research funding for dementia and to make public awareness of dementia a priority on your agenda. By the time you have finished this letter, another person will have been diagnosed with dementia. Dementia affects all ethnicities, cultures, socioeconomic classes, men and women; this disease could affect you one day. Please advocate on behalf of this cause; we all must work together to conquer this disease.

I am 59 years old and in September, 2007, I had what has been described as possible mini-strokes or TIA's. After ﬁnally getting to the right kind of doctor (a neurologist) and having all the proper testing done, I was diagnosed with Alzheimer's in March of 2008. I went through a few months of depression and just quit living. I thought my life was over. All I knew about dementia or Alzheimer's was what I had heard about this nasty disease. A good friend of mine, unknown to me, knew something was not right with me for a couple of years even before I had the episodes in September. She had been checking my symptoms out online without me knowing it. In addition to helping me see that I needed to get checked for Alzheimer’s she also ﬁnally convinced me that my life was not over. Also about the same time another doctor I was going to for another medical

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condition explained to me it was not the Alzheimer’s that was causing me all the problems I was having but my depression that was the cause. It was like I was hit in the head with a baseball bat. I could have a decent life and still feel good about living as long as I made some changes to learn to live with the disease. I could either let Alzheimer's manage my life or I could learn to manage the Alzheimer's and depression. Over time I made changes to live my life the best I can.

1. Make a written list each evening of what I want to do the next day. 2. Do the same daily routine at the same time. Eat breakfast, get cleaned up, and then do anything else I need to do. 3. I slowed down my walking. If I make a quick turn I lose my balance. 4. Avoid stress at any cost. I even ended a relationship with a friend who was having a diﬃcult time handling my condition and where it is leading. I believe stress will cause my brain to get worse faster. 5. Years ago when I quit drinking, one of the steps was turning the problem over to a "Higher Power" which I know is God. So I have turned my medical problems over to Flops (Alzheimer's) and Flossie (depression). When something happens, I think of it as a Flops or Flossie moment.

Phil Reinoehl First, I changed my view of mental illness. I, and too many other people, viewed mental illness as a weakness of the mind like the movie "One Flew over the Cuckoo’s Nest." Now that I have Alzheimer’s, I am not ashamed nor do I think I have to keep quiet about what is going on with me. I changed my attitude and accepted what I have and started to live like I have preached for many years, one day at a time. This is a list of what I do on a daily basis:

6. Faith and trust. I always thought I had faith and trust, now I am living it. I have faith and trust I will be able to deal with each day one day at a time. Maybe I will find out differently as time goes on, but for today it gives me a lot of peace not to worry about it. I am really excited about my life now, but for a long time, I wasn’t. It has been over 10 years since I first noticed I did

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not have any vision of a future for myself. Before then I always had something to look forward to. But, somewhere along my journey I lost that vision. I still do not know what happened; I think it may have had something to do with the earliest stages of my brain going haywire. Now, I do not live beyond today; I do not live in yesterday or expect anything from tomorrow except what it brings and I will deal with it then. I am more at peace and content with what is going on and I love humor. I think and feel God is alive and guiding me along my path. I have trust and faith that I am where he wants me to be. If not, I would be somewhere else, wouldn't I?

Attendees receive one day of educational services during a week ﬁlled with activities and are able to meet others like themselves who have a parent or grandparent with Alzheimer's or Frontal Temporal Dementia. The teenagers are able to form a connection amongst themselves and to realize that they are not alone on this caregiving journey. Camp is being held July 19th-25th in Chouteau, Oklahoma. Scholarships are available. To ﬁnd out more, contact Tracy or Allen Mobley at 417-933-5520 or through e-mail tiger@centurytel.net.

Mailbox Dear Readers, It’s easy to always look at our own faults, whether it’s something about the way we look or the fact we were late for an appointment, or couldn’t remember we had an appointment. The North Shore’s Early Stage Support Group (North Vancouver, British Columbia) decided to look at the positive– at what we admire about ourselves. One by one, we answered the question: What’s one of my best qualities? What a great group we turned out to be! Here are some of the qualities our members are proud to claim:

Announcing Austin’s Camp Building Bridges If you are a young teen, ages 13-16, and have a parent or grandparent with dementia there is a place where you won't feel alone. Austin's Camp Building Bridges is now in its second year of development.

“I’m a kind person.” “Friends tell me I’m a good friend to them.”

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“I’ve always been an organized person.” “I’m patient.” “I’m learning to be less stressed.”

The National Institute on Aging (NIA) has released the latest edition of the Progress Report on Alzheimer's Disease, a summary of Alzheimer's research conducted or sponsored by NIA and other components of the National Institutes of Health (NIH).

“I don’t judge other people.” “Even though I’ve never had a lot of selfconﬁdence about myself, I’ve been a pretty good mom and wife.”

2007 Progress Report on Alzheimer's Disease: Discovery and Hope describes NIH's important AD research eﬀort. The 48-page publication begins with an introduction followed by a brief primer on AD that reviews the main features of the disease, discusses the causes, and describes how AD is diagnosed and treated. The main section highlights recent advances in nine topic areas:

“I make time for what’s most important in my life – my family.” The North Shore Group would like to suggest that other groups try the same thing in your next meeting and let us know, through our Insight newsletter, what your best qualities are. One last tip: try not to compare yourself to others or even to the way you used to be before your diagnosis. Remember, “comparison is the thief of joy.” Regardless of dementia, you are still you!

Improving Our Understanding of AD Learning About Cognitive Aging Normal Cognitive Aging, Cognitive Decline, and AD: What's the Diﬀerence? Accelerating the Search for Genetic Causes and Risk Factors Attention to Non-Genetic Risk and Protective Factors Pays Oﬀ Exploring All Possibilities to Improve AD Diagnosis Making the Most of Translational Research Supporting the Gold Standard: AD Clinical Trials Helping Caregivers Cope

Sincerely, Participants of the North Shore EarlyStage Support Group, North Vancouver British Columbia, Canada This letter is reprinted with permission from Insight – A Newsletter for and by People with Dementia, December, 2008. To request information about this Canadian newsletter, write, phone, or email to the above contact information.

By Us For Us Guides The By Us For Us Guides are a series of guides created by a group of persons with dementia in the Ontario,

Informative New Resources Progress Report on Alzheimer's Disease

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Canada area. The guides are designed to equip persons with dementia with the necessary tools to enhance their well-being and manage daily challenges. The ﬁrst three guides were published in 2007 on the topics of Memory Workout, Managing Triggers, and Enhancing Communication and were reviewed last year in Perspectives newsletter. This year brings the introduction of two additional booklets, Enhancing Wellness and Tips and Strategies.

incorporates students from the University of Central Florida (UCF). The program was founded by Nancy and Tom Gerrity. Tom was diagnosed at age 55 with early-onset Alzheimer’s. The former engineer could no longer work, but he was able to be by himself during the day without any diﬃculties. There was only one problem — he was “terribly bored.” There was “a support group and adult day care, but nothing in between,” Nancy said, so she decided to start a program on her own. “It’s just a dream come true…to see how folks are beneﬁting and getting the stimulation, where they would just be sitting at home.”

The Enhancing Wellness Guide focuses on how enhancing physical, psychological, emotional, social, and spiritual well-being can help persons with Alzheimer’s or a related disorder live full lives. The booklet provides tips on healthy eating, physical activity, maintaining connections with others, and enhancing overall wellness. The Tips and Strategies Guide contains ideas and suggestions for daily living with memory loss and other symptoms of a dementia. The booklet includes additional memory “workout” ideas, tips for those in the workforce, and general recommendations and strategies for daily living.

Brain Fitness Club participant playing Nintendo Wii bowling Dr. Janet Whiteside, PhD, clinical instructor at UCF’s Communicative Disorders Clinic supervises graduate students who create an individualized plan of care for each member. The clinicians evaluate the members’ thinking and communication abilities and design exercises around them. The

The Brain Fitness Club Twice a week for 4 hours, a group of 12 adults meet at the First United Methodist Church in Winter Park, Florida for the Brain Fitness Club. This collaborative program

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members have one-on-one therapy 40 minutes each week. At the end of the session, members are provided with a binder of exercises tailored to their interests and abilities that serves as their daily homework for mental stimulation. According to Whiteside there are groups that provide mental stimulation for people with dementia, but the Brain Fitness Club oﬀers a level of therapy that is not provided elsewhere.

program is designed to stimulate the brain and build new connections.” “Everything they do teaches us something,” says Fred Tombros, a member of the club. Bob Tomcavage thinks the work is making a diﬀerence. “I can go home and go into the closet and remember what I was in there for,” he says with a laugh. Adapted from an article in the March 16, 2009 issue of e-Review Florida United Methodist News Service. Permission for reprint granted by Tita Parham, managing editor.

“You don’t find many places like this,” says 78 year-old Bob Tomcavage. He says he looks forward to his time at the club and being with the other members. “When you come to a place like this you have a different attitude,” he said. “I come here, and I am different…It’s like giving you a gift. They work with you, and they talk with you.”

Principles for a Digniﬁed Diagnosis Principles for a Digniﬁed Diagnosis is written by people with dementia on the subject of the Alzheimer diagnosis experience.

When not working individually with the graduate students, the members are engaged in group activities that stimulate the brain like word games, problem-solving activities, and creative writing or physical activities like ping pong, pool, foosball, bowling on the Nintendo Wii, or attending line dancing lessons. It’s a fun, stimulating environment that is geared to serve individuals experiencing early memory loss.

In the 2008 report Voices of Alzheimer’s Disease: A Summary Report on the Nationwide Town Hall Meetings for People with Early-Stage Dementia,

“Our philosophy is challenge without frustration,” said Peggy Bargmann, R.N, coordinator of the program. “The

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the Alzheimer’s Association identiﬁed diagnostic challenges and dissatisfying interactions with the medical community as two major challenges articulated by people living with the disease. These principles are their insights on how to make the experience better.

can also aﬀect people in their 40s, 50s, and 60s. Deliver the news in plain but sensitive language. This may be one of the most important things I ever hear. Please use language that I can understand and is sensitive to how this may make me feel.

Talk to me directly, the person with dementia.

Coordinate with other care providers.

I am the person with the disease, and though my loved ones will also be aﬀected, I am the person who needs to know ﬁrst.

I may be seeing more than one specialist – it is important that you talk to my other providers to ensure you all have the information so that changes can be identiﬁed early on and I don’t have to repeat any tests unnecessarily.

Tell the truth. Even if you don’t have all the answers, be honest about what you do know and why you believe it to be so.

Explain the purpose of diﬀerent tests and what you hope to learn. Testing can be very physically and emotionally challenging. It would help me to know what the purpose of the test is, how long it will take and what you expect to learn from the process. I would also appreciate the option of breaks during longer tests and an opportunity to ask questions.

Test early. Helping me get an accurate diagnosis as soon as possible gives me more time to cope and live to my fullest potential and to get information about appropriate clinical trials. Take my concerns seriously, regardless of my age.

Give me tools for living with this disease.

Age may be the biggest risk factor for Alzheimer’s, but Alzheimer’s is not a normal part of aging. Don’t discount my concerns because I am old. At the same time, don’t forget that Alzheimer’s

Please don’t give me my diagnosis and then leave me alone to confront it. I need to know not only about medical treatment options but also what support is available through the Alzheimer’s

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Association and other resources in my community.

Dr. Mark Tuszynski is Professor of Neurosciences at University of California, San Diego and Director of the Center on Neural Repair. He and his research team were interested in determining whether BDNF could prevent cell death, stimulate cell function, improve connections between cells, and improve learning and memory in laboratory animals with Alzheimer’s.

Work with me on a plan for healthy living. Medication may help modify some of my neurological symptoms, but I am also interested in other recommendations for keeping myself as healthy as possible through diet, exercise, and social engagement.

In their animal model research, they administered BDNF to regions of the brain that are important for memory, the entorhinal cortex and hippocampus. The most compelling evidence of a beneficial effect of BDNF was the observation that brain cell (neuronal) death was prevented in some of the animal models, and that connections between neurons (synapses) were improved in density by about 25%. Improvement in thinking was also observed in many of the animal models. “I am unaware of other therapies that prevent the death of neurons and stimulate brain connectivity (synapses) to the extent we observed with BDNF. An important question is whether we can harness these biological effects to treat AD in humans,” states Dr. Tuszynski. “If animal model studies continue to be safe, we hope to begin human trials in about two years.”

Recognize that I am an individual and the way I experience this disease is unique. This disease affects each person in different ways and at a different pace. Please be sure to couch your explanation of how this disease may change my life with this in mind. Alzheimer’s is a journey, not a destination. Treatment doesn’t end with the writing of a prescription. Please continue to be an advocate – not just for my medical care but for my quality of life as I continue to live with Alzheimer’s.

Research Update Brain Derived Neurotrophic Factor (BDNF) is a naturally occurring protein and “growth factor” that helps neurons to function in a healthy brain, and facilitates electrical communication between neurons. BDNF is normally made in our brain circuits throughout life, but levels are reduced in Alzheimer's disease (AD).

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can also improve blood ﬂow to the brain, and may help build connections between brain cells.

Volume 14, Number 4: May – July, 2009 The Ongoing Beneﬁts of Physical Exercise

Research published in 2008 from Jeffrey Burns, MD, and colleagues at the University of Kansas School of Medicine suggests that exercise may help to reduce some of the shrinkage of the brain associated with Alzheimer’s. Gradual shrinkage of brain volume is a part of the aging process, but the shrinkage is much more significant in persons with Alzheimer’s and contributes to the decline in thinking and functional abilities associated with the disease. Dr. Burns looked at 121 people over age 60, around half of them in the early stages of Alzheimer’s. When compared to adults without Alzheimer’s, persons with Alzheimer's who were less physically fit (based on measures of heart and respiratory fitness) had four times more brain shrinkage than those with Alzheimer’s who were more physically fit. Dr. Burns states, "People with early Alzheimer's disease may be able to preserve their brain function for a longer period of time by exercising regularly and potentially reducing the amount of brain volume lost. Evidence shows decreasing brain volume is tied to poorer cognitive performance, so preserving more brain volume may translate into better cognitive performance."

Many people with Alzheimer’s or a related disorder wonder what they can do to help maintain their physical and emotional health as well as their thinking abilities. There is a growing body of research into ways to maintain well-being in the face of Alzheimer’s. In this article, we explore what is known about the benefits of physical exercise for people with Alzheimer’s and review some hopeful possibilities for improved well-being. Exercise May Help Maintain Your Brain Your brain requires adequate oxygen in order to function. The brain makes up about 2 percent of your entire body weight, but consumes roughly 20 percent of the oxygen that you breathe. High blood pressure, cardiovascular disease, or elevated blood sugars (such as those attributed to diabetes) can all reduce blood flow and oxygen to the brain. These other health problems can worsen some of the difficulties with memory and other areas of thinking associated with Alzheimer’s. Regular physical exercise helps to maintain a healthy heart and cardiovascular system, controls weight, and reduces risk for diabetes. Exercise

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Amy Jak, PhD of the University of California, San Diego has also reported on encouraging ﬁndings from her research in exercise and cognition (thinking). Her preliminary work in this area suggests that persons with Mild Cognitive Impairment (changes in thinking that often precede Alzheimer’s) who are more physically active appear to have slower volume loss in the hippocampus, a region of the brain essential to forming memories. These physically active individuals have better maintenance of overall thinking abilities including the ability to plan and multitask than those who are more sedentary.

antidepressant to try to treat these symptoms, but it is well-documented that routine exercise can also be a helpful remedy. Exercise can help to build a healthy appetite, inﬂuence and regulate sleep patterns, and release endorphins in the brain that contribute to a feeling of well-being. Many people with Alzheimer’s say they feel brighter, more alert, and in a better mood after physical exercise. In their study published in 2003, Linda Teri, PhD and colleagues at the University of Washington in Seattle found that structured exercise training combined with teaching caregivers behavioral management techniques improved physical health and depression in persons with Alzheimer’s.

Dr. Burns and Dr. Jak caution that their study ﬁndings need to be replicated to ensure greater certainty. In the meantime, it can’t hurt to hope that brain shrinkage can be reduced through improved physical ﬁtness.

Exercise Can Reduce Stress As with symptoms of depression, it is also common for individuals with Alzheimer’s to have spells of irritability, impatience, or agitation. These feelings can result from the frustrating daily encounters with memory loss and other symptoms. Everyone needs to let off a bit of steam sometimes, and exercise is an excellent outlet for frustrations. Just as many feel more alert after exercise, others report the beneficial calming effects of physical activity. The focus on physical exercise can take the mind off of worries and relaxes the thoughts a bit.

Exercise Can Improve Your Mood Many people with Alzheimer’s experience symptoms of depression. The stress of living with memory loss combined with changes in the brain chemistry can result in disrupted sleeping or eating habits, increased feelings of sadness or hopelessness, and a disinterest in previously enjoyed activities. Depression can also aﬀect thinking and concentration, and worsen some of the symptoms of Alzheimer’s. Doctors often prescribe an

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Maintaining Strength, Flexibility, and Coordination

It is important to tailor a program to meet your own speciﬁc needs, health conditions, and body type. See this page for a new helpful exercise guide to use as a resource in developing your exercise routine.

Some people with Alzheimer’s become more sedentary. Lack of meaningful activity can lead to decreased muscle strength, bone density loss, and reduced ﬂexibility. Maintaining strong muscles, balance, and coordination can help you function independently for a longer period of time and reduce risk for falls or other serious injuries. In 2008, Australians Megan Wraith, PhD and Arthur Criddle, MD reported their research ﬁndings that home exercises, supervised by a caregiver, helped men and women with early Alzheimer’s improve their balance and maintain their independence and quality of life over a year-long period.

Exercise Resource The National Institute on Aging’s updated exercise guide for older adults has something for everyone. Exercise & Physical Activity: Your Everyday Guide from the National Institute on Aging, is based on decades of research that shows the benefits of physical activity for older adults, including those with Alzheimer’s. The Free of Charge guide describes the benefits of physical activity and healthy eating, explains how to get started, and demonstrates four types of exercises—endurance, strength, balance, and flexibility—that can be done at little or no cost, often at home. It also suggests ways to modify activities so that people with chronic conditions and disabilities can exercise safely.

Consult with your physician before beginning any new exercise routine. There are many forms of exercise and you will need to determine the one best suited to you. Walking and swimming are two popular and excellent sources of physical exercise and can be combined with stretching and strengthening routines to round out your ﬁtness program. You can check with your local senior center or YMCA (in the USA) for exercises classes. Some may oﬀer Yoga, or the Chinese- based practices of Tai chi, or Qigong. These forms of gentle, focused exercise can help with strength and balance.

The guide includes exercise through household chores and hobbies, such as raking leaves and dancing, as well as traditional exercises such as strength training, jogging, and aerobics classes. The message is to be active in ways that suit your lifestyle, interests, health, and budget. The guide also oﬀers practical tips on when to talk with the doctor about exercise and information

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on being active in speciﬁc situations, such as walking in rural areas.

Focusing on the good and the positive – being thankful for what you still have Realize that there is a lot to enjoy still and that despite having Alzheimer’s there could be worse things in life to have to deal with. There are a lot of things that we can still do and we have access to so much more help and resources than many people in the world. We need to count our blessings every day.

People with Alzheimer’s Discuss: Things That Help to Get Us Through the Tough Times In a recent support group meeting in San Diego, California, participants with Alzheimer’s discussed the challenges of living with memory loss and other symptoms. Discussion led to the various actions, attitudes, or relationships each person relies on to get through challenging times. Do you relate to any of these responses? What helps you to make it through tough times?

Don’t be too quick to judge circumstances – Some things are not as bad as they may initially seem. When I was diagnosed, I thought my life was over, but I’ve learned to cope pretty well. I don’t jump to drastic conclusions now and that helps me stay a little more even during the rough times. Luck – Sometimes it seems like good luck can happen when you least expect it. I know some things have happened in my life that just seemed like a stroke of luck came at just the right time. I don’t always know why the rough times or the good times happen. It can just seem like the luck of the draw.

Humor – It’s good to be able to laugh and lighten the load sometimes. It doesn’t make everything go away, but it somehow makes it all manageable when you can ﬁnd the humor in life.

Perseverance – Just keep at it one step at a time, one day at a time. Marrying the right person – It was the most important decision I made and we’ve helped each other through a lot of hard times.

A sense of perspective – It’s good to be alive – Alzheimer’s is hard sometimes, but I’m glad I’m still here to talk about it!

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Eﬀective communication – If your communication is destructive your relationship and life will go downhill. My wife and I talk through the hard times and that helps a lot.

• To support the social, educational, and emotional needs of persons with early memory loss. • To provide the opportunity to learn about memory loss, discuss concerns, and build on strengths.

If you have a problem, get it out as soon as possible – Don’t hold things in. Reach out to someone during the rough times and it will help you get through them.

• To provide opportunities for activities that support cognitive abilities.

A good dog – They’ll listen to you for hours and will go through any rough time with you!

• To provide support for family care partners.

Make some plans – Look at what you can and can’t do. If you make a good plan, you have something to anticipate and look forward to. The rough times can pass if you can have good things to take their place.

A typical day includes morning coﬀee and newspaper discussion; a support group time where participants check-in with one another and discuss issues or concerns; an exercise period; lunch together; a variety of activities to stimulate thinking; other educational programs; music, art, and dance/movement therapies; humor; and discussion and reminiscence. Special programs include quarterly outings and lunches with guest speakers. Dance/movement therapy is a unique feature of Mind Matters. Movement, non-verbal communication, and body awareness exercises help to facilitate discussions about memory loss challenges, emotions, and the changes in daily living that the participants face. Participants learn about common experiences and are able to increase their self-expression.

Mind Matters By Julie Lamberti, LCSW House of Welcome (HOW) Adult Day Services of the North Shore Senior Center in suburban Chicago provides specialized programs for persons with Alzheimer's or a related disorder. With research indicating that social interaction, physical exercise, and cognitive activities can be particularly helpful to those with early memory loss, HOW launched Mind Matters in 2007 with help from a grant awarded by the Brookdale Foundation. The goals of Mind Matters are:

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Feedback from participants and their family members has been overwhelmingly positive. Participants have shared how much they enjoy attending, and how they feel less isolated and more proactive in helping themselves. We asked participants, “Why is Mind Matters important to you?” Here are some of their responses:

and healthy brain cell function. DHA is found in fatty fish such as salmon and investigators hoped that DHA supplementation might be beneficial to brain functioning in people with Alzheimer’s disease (AD). The nationwide Alzheimer’s Disease Cooperative Study, funded by the National Institute on Aging, recently released findings from a large double-blind, randomized, placebo-controlled clinical trial comparing DHA supplement with placebo in over 400 people with mild-to-moderate Alzheimer’s who were followed for 18 months to examine in detail whether DHA would slow progression. Although supplements increased levels of DHA in the blood of persons with AD who received the treatment, the supplement did not slow the rate of decline as compared with persons on the placebo. Researchers concluded that based on the results of this trial, DHA supplements (usually in the form of fish oil) are not an effective treatment for Alzheimer’s. While these results are disappointing, it is important information for families who may spend extra money on supplements of questionable worth in treating Alzheimer’s–related memory loss.

“The camaraderie of the group.” “The information I learn here is good, and to know I’m not alone.” “I’ve learned a lot about people I wouldn’t have known otherwise.” “It helps us to find ways to improve our memory.” “I’ve enjoyed the openness here. We’re not competing, and we have fun.” “It opens my mind. I find it stimulating.” “It’s a nice atmosphere. People aren’t judgmental.” “I find it relaxing. My spouse doesn’t have to worry about what I’m doing.”

Research Updates Results from DHA Clinical Trial

The potential beneﬁt of DHA in preventing age-related cognitive changes in people who do not

DHA is one of the omega-3 fatty acids and is essential to human nutrition

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have Alzheimer’s may hold more promise and is still an area of active study.

Apolipoprotein J/clusterin (ApoJ) might contribute to genetic risk for AD. ApoJ is a protein that occurs in all body ﬂuids and has been studied for its role in aging, injury response, and the immune system. It may also bind to the beta amyloid protein and inﬂuence its processing in the body. Abnormal deposits of beta amyloid are found in the brains of people with Alzheimer’s and many of the treatments under investigation are targeting ways to arrest or remove these damaging protein deposits. Understanding the role of genetic markers such as ApoJ in Alzheimer’s can help scientists to identify new targets or pathways for prevention and treatment of the disease

New Discoveries in Alzheimer’s Disease Genes Since the early 1990s, researchers have been discovering genetic risk factors for Alzheimer’s disease and this area remains an active area of interest. Scientists have determined rare genetic mutations that are responsible for some cases of familial young-onset Alzheimer’s (about 1 percent of all Alzheimer’s cases). Other genes, however, are “susceptibility” genes in that their presence increases risk for Alzheimer’s but does not inevitably result in the disease. For example, Apolipoprotein E (ApoE) is a gene that is responsible for carrying cholesterol in the blood. One form of this gene ApoE4 - is present in up to 40% of people who develop Alzheimer’s later in life and contributes to risk of developing the disease.

Stem Cells and Alzheimer’s Scientists at the University of California, Irvine, recently reported on their promising work with neural stem cells in laboratory mice. Stem cells are unique due to their ability to develop into any other cell made by the human body. Stem cells are of great interest to medicine and science because of their potential to replace cells that die oﬀ in many illnesses including stroke, heart disease, Parkinson’s, and Alzheimer’s.

At the recent International Conference on Alzheimer’s Disease held in Vienna, Austria, scientists reported on a number of new genetic ﬁndings that warrant further investigation. The studies use gene arrays to examine markers for 500,000 sites of genetic variation in DNA, and are called Genome-Wide Association studies (GWAS). The largest GWAS to date, using DNA from about 20,000 people, suggested that

In this study, the brains of mice genetically modiﬁed to have Alzheimer’s were injected with mouse neural stem cells. The stem cells secreted a protein called brain- derived

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neurotrophic factor (BDNF) that helped to sprout new neurites (communication connections between brain cells) in the mouse brains. This resulted in improved memory performance in the mice. Lead scientist Mathew Blurton-Jones, PhD states, "The neural stem cells were helping the brain form new synapses and nursing the injured neurons back to health." The Alzheimer’s mice who had BDNF injected directly into their brains also improved, but not as much as those who received the neural stem cells. The stem cells seemed to provide a more long term and consistent supply of BDNF.

history, but wonder if they have a genetic risk factor that led to the onset. At present, most doctors do not recommend routine genetic testing for Alzheimer’s. The exception is in individuals with a family history where the disease begins in members at a very young age (in their 30s, 40s, or 50s). In these individuals there could be a chance of a familial genetic mutation. These rare “presenilin” genes are determinant – that is, if you carry the gene mutation, you will certainly develop Alzheimer’s at a young age and there is a 50% chance that the gene will be passed on to your oﬀspring. Knowing whether you carry the gene could have an impact on family planning and planning for the future. However, many people who develop Alzheimer’s at a younger age do not carry these genetic mutations.

The beneﬁts of stem cells and BDNF are exciting new areas of research and we will keep readers apprised of any updates.

Questions and Answers Q. “Can my children or I be tested for any Alzheimer’s genes?”

Other genes can predict greater risk of developing Alzheimer’s, but are not determinant (see genetics news on page 6). There is little reason at present to be tested for these genes because there is no treatment that would be prescribed based on the test results. At present genetic markers are used primarily for research purposes only.

A. Many people with Alzheimer’s wonder if there is a reason why they developed the disease. Some have a family history of Alzheimer’s with a parent, sibling, or multiple family members who have been aﬀected. Others may have no signiﬁcant family

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Volume 15, Number 1: August – October, 2009 Approaches to Alzheimer’s by George P. Scollins Jr. How to Save Money on Prescription Drugs Living Words Writing to Improve Lives by Joyce Finkle Speaking Our Minds: What it’s Like to Have Alzheimer’s by Lisa Snyder, MSW, LCSW Volume 15, Number 2: November – January, 2010 Understanding the Booming Business of Brain Boosters Caring Tips From Individuals with Alzheimer’s The Memory Fitness Center: A Comprehensive Activity Based Program ALZ is Not About Me, You See by John Dana MacInnes Volume 15, Number 3: February - April, 2010 We Can Make a Difference by Dutton Teague I Still Enjoy A Good Laugh!: A Guide for the Journey Through Alzheimer’s Disease by Sharon Gregoire, OTR/L Between Us by Ken Saulter

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My Name is Not Dementia Findings from a Survey on Quality of Life Being Lost and Getting Found: Disorientation and Alzheimer’s Volume 15, Number 4: May – July, 2010 Reflections from a Physician Living with Alzheimer’s by Arthur Riven, MD Three Innovative Programs: Explore the Theatre Arts

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others to see a physician, get a diagnosis, and move on.

Volume 15, Number 1: August – October, 2009

In their ﬁght against AD, George and Patricia Scolllins have participated in several research studies at the BU ADC. Mr. Scollins is determined that “whatever happens is going to be positive, not negative.”

Approaches to Alzheimer’s By George P. Scollins Jr. Perspectives Editor’s note: We are grateful to Boston University Alzheimer’s Disease Center (BU ADC) and to George and Patricia Scollins for their permission to reprint George Scollins Jr’s essay from the BU ADC Fall, 2006 Bulletin in this issue of Perspectives.

Twenty-one months ago I was diagnosed with AD. Since that time, I have learned a number of approaches that may help others. My major purpose in sharing this information is to communicate eﬀective ways to face the realities of AD.

Boston University ADC Editor’s note: As a special education administrator in four diﬀerent school districts over 25 years. George Scollins has spent much of his career educating and advocating for others. Today, despite a diagnosis of Alzheimer’s disease (AD), Mr. Scollins continues his life work through our feature article, Approaches to Alzheimer’s: Essay by George P. Scollins, Jr. It is just one way that he and his wife Patricia are helping others who are coping with AD. Mr. Scollins was prompted to write the essay when he saw members of his support group struggling with their symptoms, but often reluctant to seek medical attention. Mr. Scollins urges

Approach #1: Do your best to make use of valuable time. Avoid feeling sorry for yourself. Instead focus on remaining positive and learning about participating in research studies, especially brain and dementia research studies. A song from the Second World War seems especially germane to a positive approach: “Accentuate the positive, eliminate the negative, latch on to the aﬃrmative, but

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don’t mess with Mr. In- between.” To illustrate my last remark, Jonah in the whale, Noah in the ark. What did they do when everything seemed so dark? They accentuated the positive, eliminated the negative, latched on to the aﬃrmative, but did not mess with Mr. In-between.

Approach #3: Keep your mind as alert and active as possible. There are numerous ways to keep your mind active with regular activities, such as crossword puzzles and memorizing items. The AARP website (http://www.aarp.org) is among the better sources for these activities, such as “brain aerobics.” Approach #4: Stay healthy by exercise and proper diet.

George P. Scollins, Jr.

Studies have shown that regular exercise when combined with a healthy diet is helpful in keeping your mind alert and able. Your doctor should be consulted if you plan to expand your physical activity level. Many health tips stress that what is good for your heart is good for your brain, including your ability to think and remember. Good sleeping habits help the body respond better to mental activities.

Approach #2: Take care of important ﬁnancial aﬀairs.

Approach #5: Volunteer to participate in Alzheimer’s research. Boston University and other medical schools are looking for volunteers to participate in studies. Even though participation may not improve your condition, it may help others now and in the future. Positive approaches certainly should take precedence to feeble or absence of eﬀort to confront the realities of your situation.

Make use of services of an elder care attorney who is experienced in dementia- related issues. Establish a health care proxy, living will, and power of attorney so your wishes will be acted upon. The earlier you complete these items, the easier it will be for those you have delegated to carry out your wishes.

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Approach #6: Remain as active and social as possible.

you are more aware of changes and their insights help you adjust in a positive manner.

Maintain contacts with old and new acquaintances. Outreach to others will greatly expand your horizons and outlook. Reaching out to others who have Alzheimer’s may serve you well in viewing your own situation from a diﬀerent perspective. It will assist others in becoming more positive under trying conditions.

Approach #9: Get help from support groups, family, and friends. One of the most positive results of writing this essay has been a deeper understanding of myself and the positive responses I have had to the condition. I more deeply appreciate the help provided by my care partner and wife, Patricia, and the value of speaking at programs and to caregivers. As a result, my conﬁdence in living with the condition in a positive manner has been expanded. My appreciation of the support group leaders and the contribution of the support group members are even more signiﬁcant.

Approach #7: Become as knowledgeable as possible about the status of Alzheimer’s research. Seek out this information and ask your healthcare professionals to interpret it for you. The amount of research in this area is staggering. One source of information is the Alzheimer’s Association. Meetings are regularly scheduled by local chapters, which are useful to keep abreast of developments. Periodic appointments with your neurologist are crucial in understanding your condition. The tests that accompany these visits provide ongoing assessment of where you are with the disease.

Approach #10: Accentuate the positive. The most significant aspect of this experience is the way I changed over this period. I find myself crying at heart-rending television programs and movies. Newspaper articles or senseless violence produce a new, but similar type of effect. My desire to help others is expanding, as is my determination to stay positive despite the realities of Alzheimer’s. However, the lyrics of a bygone song remain deeply embedded in my mind. “You’ve got to accentuate the positive, eliminate the negative, latch on to the affirmative, but don’t mess with Mr. In-between.” Remain positive, it does make a difference!

Approach #8: Recognize and accept that changes in your emotional and cognitive state are a reality of living with AD. One major reality is recognizing that your care partner often has a clearer understanding of your emotional and cognitive status than you do. As a result,

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Individual response to supplements or medical foods can vary. You may be curious about certain products or perhaps you have experienced a positive outcome from their use. The use of supplements is a personal decision, but it is important to inform your doctor of any nutritional supplements you are taking.

Questions and Answers Q. Are there any supplements or “medical foods” that can help to treat Alzheimer’s symptoms? A. There are countless supplements and nutritional drinks that claim to help prevent Alzheimer’s or boost brainpower. To date, there is limited scientiﬁc evidence that any marketed brain booster can signiﬁcantly alter the course or symptoms of Alzheimer’s. Many brain boosters are a mixture of vitamins, herbs, and other substances that have been studied individually without promising results. It is unclear whether a combination of these compounds taken together can produce a more encouraging outcome, but supplements can be expensive and consumer caution is warranted.

Research Updates Gammaglobulin Alzheimer’s Partnership (GAP) The GAP Study will examine the safety, eﬀectiveness and tolerability of Gammaglobulin, a form of Immune Globulin Intravenous (IGIV) in patients with mild to moderate Alzheimer’s. Antibodies that bind to beta amyloid are present in IGIV, which is made from the blood of several thousand healthy adults. It is hoped that the antibodies in IVIG can help to clear beta amyloid protein from the body and prevent its destructive deposition in the brain. This clinical trial aims to slow the progression of Alzheimer’s rather than just treating symptoms.

A product may be marketed as a “medical food” meaning that it requires a doctor’s prescription. Axona is an example of a medical food marketed for Alzheimer’s. Medical foods are regulated by the Food and Drug Administration (FDA) to some extent for safety, but do not undergo the rigorous trials for eﬃcacy that drugs do. Medical foods aimed at the treatment of Alzheimer’s will likely become more available in the near future and you will need to consult with your doctor about any possible beneﬁts of these products.

GAP is recruiting 360 participants ages 50 to 89 at 36 sites nationwide. This Phase III clinical trial expands on earlier testing, and is part of the ﬁnal phase in studying IGIV as a potential treatment for AD before seeking approval from the Food and Drug

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Administration. IVIG has a good safety record and is already approved for use in other medical conditions.

undergone initial safety studies in animals and humans and is now in a Phase 2 study to further evaluate safety and eﬃcacy.

The trial is being conducted by the Alzheimer’s Disease Cooperative Study, a nationwide consortium of research centers and clinics coordinated by Paul Aisen, MD at the University of California, San Diego.

Fifty participants with mild-to-moderate Alzheimer’s are being enrolled around the country. Although all of the participants will have a surgical procedure, only half will receive actual treatment. If this study proves to be as beneﬁcial as preliminary trials have shown, all study participants will eventually be given the actual treatment.

Nerve Growth Factor Study (CERE-110) Underway Alzheimer’s disease results in the destruction of brain cells and the connections between these cells (synapses). Nerve growth factor is a naturally occurring protein that is thought to be able to restore the health of certain brain cells. CERE-110 is an experimental drug designed to help produce nerve growth factor in the brain to enhance brain cell function and to prevent further damage to cells. Ceregene, the company, that makes CERE-110, and the Alzheimer’s Disease Cooperative Study have embarked on a clinical trial of nerve growth factor that aims to arrest disease progression for a period of time rather than simply treating symptoms.

How to Save Money on Prescription Drugs Everyone is looking for ways to economize, and the medicine cabinet is a great place to begin. Consider the following ways to evaluate your prescription drug costs and take action to save money: 1) Ask for generics Some physicians prescribe medications without oﬀering a generic option. Not all prescriptions have an available generic, but there is usually a signiﬁcant cost savings if they do. Ask your doctor or pharmacist to review your medication list with you to determine any generic options.

This study is more complex than most clinical trials in that it requires a brain surgery procedure to deliver the CERE-110 compound into the regions of the brain thought to be most aﬀected by Alzheimer’s. This procedure has

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2) Check for over-the- counter options

it will produce a list of the plans that cover your prescriptions. http://www.medicare.gov/. You then need to call each plan to discuss the premiums and co-pays. If you have not enrolled in a Medicare prescription drug plan, you can enroll during the Annual Election Period that runs from November 15th -December 31st. If you have a Part D plan and are trying to manage your out-of-pocket costs, AARP has a "doughnut hole" calculator to help you determine your prescription drug costs at http://doughnuthole.aarp.org/

Some medications that used to be "prescription only" may be available over-the-counter (OTC). Check with your pharmacist to determine if the kind of medication you need is available in a less expensive non-prescription form. Confirm with your physician before making any changes from prescription to OTC medications. 3) Look into retailer discounts Major retailers including Wal-Mart and Target offer a host of generic prescriptions for as little as $4 per month, and $10 for a 3-month supply. These are the costs without insurance. Go to each retailer's website where they publish current lists of the drugs available for lower prices. 4) Buy in bulk Many insurance plans offer mail-order pharmacy options where you can purchase a 90-day supply of medications at a lower cost than if you were to pay a monthly co-payment at your local pharmacy. Call your insurance company to find out if they offer this.

6) Look into Patient Assistance Programs

5) Evaluate your Medicare D plan

If you are uninsured or have very limited income some pharmaceutical companies may provide medication free of charge. NeedyMeds is

Not all prescription drug plans under Part D are created equal. The Medicare website oﬀers a "formula ﬁnder" where you can enter your medication list and

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an informative nonproﬁt organization that helps low-income or uninsured patients connect with various programs that may provide ﬁnancial assistance with medications. http://www.needymeds.org.

The Alzheimer’s Association South Carolina Chapter and its early-stage dementia and caregiver’s support group has had the privilege of working with our local Woﬀord college as well as the Hub City Writer’s Project from Spartanburg, South Carolina on a project we call Living Words. Caregivers from our early-stage support group had expressed the need for more activities for their partners with Alzheimer’s and for creative things to do together. We looked at this request as a challenge and found that when needs are addressed creatively, excitement and energy accompanies the eﬀorts.

7) Reduce consumption Ask your doctor if there are lifestyle or dietary changes, including exercise and stress reduction, that might help you to reduce your need for certain medications. The more medication you take, the more potential for side eﬀects and drug interactions. Reducing the drugs you take may help your health as well as your wallet!

We developed Living Words as a way to involve local writers who had sensitivity and awareness about dementia and who could lead persons with dementia and their caregivers in a variety of writing exercises. Living Words is comprised of two parts. The main part is a 10-week, one- hour a week workshop model, with volunteer guest writers who guide participants in a variety of writing exercises about particular emotions, insights, or memories. The styles and topics selected for the series include childhood memories and life experiences, haiku, creative ﬁction, nature writing, and poetry. Shared reminiscences, laughter, and fellowship precede the writing activity. The workshops are designed to be fun and failure- free.

Editor’s note: This article is revised from a posting by Susan Soest Valoﬀ, LCSW from the Elder Care Guides care management blog on August 11th, 2009. We are grateful to Elder Care Guides for permission to reprint this content.

Living Words Writing to Improve Lives By Joyce Finkle

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Lane Filler, a guest writer at a workshop writes: What was most compelling to me about doing a writing exercise with folks suﬀering from Alzheimer’s is that I tend to think of suﬀerers of that disease as people who have lost their memory. They haven’t of course. They have simply lost their moorings…They remember their deep past as clearly, actually more clearly, than I remember yesterday and it was a privilege to be transported back with them.

The second component of Living Words is a blog of writing samples from people who attended workshops, instructors, and others. You can read our blog at http://blogs.wofford.edu/living_words /. One caregiver, Marlu, writes: Buddy had a difficult time accepting the diagnosis. It took about one year before he finally accepted it. It was difficult for me because I couldn’t talk about it with anyone. Buddy had to accept it first. He would not want anyone feeling sorry for him so I knew he would have to accept it; then he could talk about it and face it head on. He had to be able to tell my daughter and his son so they could see that he was going to be okay as long as he had anything to do with it.

Peggy Jones is living with dementia and participated in a writing workshop. She wrote a story relating to something she was good at. In the ﬁrst part of the writing session, she shared that she was a good mother and nurturer, even in diﬃcult situations. She wrote the following story that illustrates this skill:

We talked about it often. When he found things that became diﬃcult for him, I always made light of it. I’ve never taken myself too seriously, but it was going to be a change for him.

My oldest son’s name is Russell. We call him Russ. He was always a very mischievous child. All my life I knew that the greatest thing that could happen to me would be to have a son.

I tried to think. “If the table was turned, what would I need?” I knew it was extremely important that he keep his dignity. If I could help him do that, he could accept his diagnosis.

He was always into something. I went into the kitchen one day and he was pouring syrup in circles on the eyes of the stove. I yelled out, “Russ, what are you doing?” He looked up at me with a sweet little smile and a twinkle in his eye and said, “Momma, I’m makin’ pancakes for you.”

Speaking Our Minds What it’s Like to Have Alzheimer’s Revised Edition

He would always say the sweetest things so I couldn’t punish him – and he still loves his momma.

By Lisa Snyder, MSW, LCSW

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Gain insight into the experience of living with Alzheimer’s by reading this collection of first-hand accounts. Speaking Our Minds was first published in 1999 and is now available in an updated edition through Health Professions Press. The book provides a view into the day-today experience of Alzheimer’s through the reflections of seven diverse individuals who share their thoughts, experiences, and feelings about living with memory loss and other symptoms.

goes to the UC San Diego Shiley-Marcos Alzheimer’s Disease Research Center.

Volume 15, Number 2: November – January, 2010 Understanding the Booming Business of Brain Boosters A growing number of supplements and nutritional drinks are being marketed as elixirs that can stimulate thinking abilities, prevent or treat memory loss, or boost brainpower. For most consumers, it can be hard to tease out fact from ﬁction about these claims. Given that the current treatments for Alzheimer’s are limited and clinical trials of promising drugs can be painfully slow, it is likely that more and more people are going to seek out supplements in the hope of boosting their brain function. This article provides a brief overview of the types of brain boosters currently available and what one might realistically hope to gain from their use.

By interweaving each person’s responses from in-depth interviews with her own comments, the author explores the many dimensions of the Alzheimer’s experience. Readers can learn more about: ● The uniqueness of each person’s experience and symptoms ● Coping strategies people use to face challenges and losses ● The changes that are experienced as the disease progresses ● How to identify with and listen to persons with Alzheimer’s

Supplements and Neutraceuticals Many brain boosters found in health food stores or through other distributors are mixtures of vitamins, herbs, and other substances that may have been studied individually in people with Alzheimer’s without promising results. For example, many brain boosters include Omega 3 fatty acids (speciﬁcally DHA) or ginkgo biloba

Discussion questions provide material for use in support groups or trainings and classes about Alzheimer’s. Speaking our Minds-What it’s Like to Have Alzheimer’s is available through bookstores, online, or through the author. A portion of proceeds from books purchased through the author

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even though neither of these compounds has been shown in large, well-conducted clinical trials to be eﬀective in treating Alzheimer’s. It is unclear whether a combination of these ingredients taken together can produce a more encouraging outcome, but supplements can be expensive and consumer caution is warranted.

both safety and efficacy. The drug disappointed many when the clinical trial outcomes ultimately did not reveal significant benefit compared to placebo and therefore there was no justification in approving the drug for treatment. The makers of Alzhemed went on to reintroduce the drug to the public as a supplement called Vivimind™ that now sells in Canada and over the internet as a brain booster.

The Food and Drug Administration (FDA) does not review data on the effectiveness of nutritional supplements or “nutraceuticals.” The manufacturers of nutritional supplements are not required to provide the FDA with any evidence of a product’s safety or ability to provide significant treatment. Thus consumers may be enticed by the effective marketing of claims based on little or no research. The makers of a supplement cannot advertise that the product can treat a specific disease such as Alzheimer’s (because this has not been rigorously proven), but they can, however, make more general claims about the supplement’s benefit to “memory function” or “brain health.”

Because there is no FDA oversight, the purity or potency of supplements and nutraceuticals can vary considerably between manufacturing brands and there is currently no scientifically based recommended dose of these supplements for people with Alzheimer’s. Many people assume that if something is “natural”, it can’t be harmful, but some supplements do have side effects or interactions with other medications that could compromise your health. Individual response to supplements can vary. Some consumers may feel they are benefiting from a particular supplement by feeling more alert or energetic. Sometimes just the thought that you may be doing something beneficial for your brain can lead to a feeling of improved mood or thinking. To date, however, there is limited scientific evidence that any marketed brain booster can significantly alter the course or symptoms of Alzheimer’s,

To add to the confusion, a substance may have undergone clinical trials to determine eﬃcacy in treating Alzheimer’s, but when results are found to be negative, it may then be marketed as a supplement that does not require FDA approval. For example, Alzhemed, a promising drug for treatment of Alzheimer’s underwent a series of large and reputable clinical trials to determine

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and certainly there is no supplement that can provide a cure.

safety in that they consist of ingredients “generally recognized as safe” (GRAS), but do not need to undergo the rigorous trials for safety and efficacy that drugs do. At present, the Alzheimer’s Association does not endorse the use of Axona as a treatment for Alzheimer’s, but some physicians are beginning to prescribe the medical food to patients who are seeking any possible benefit. Use of Axona can produce side effects including diarrhea, so ongoing medical observation is important.

You may be curious about the marketed beneﬁts of certain products or perhaps you have experienced a positive outcome from their use. The use of supplements is a personal decision, but it is important to inform your doctor or other health care provider of any nutritional supplements you are taking so any positive or negative eﬀects can be monitored. The Emergence of “Medical Foods”

Other medical foods aimed at the treatment of Alzheimer’s will likely become available in the near future. See page 6 for a clinical trial currently being conducted on Souvenaid™, a once-a-day milkshake formula made up of ingredients (including DHA and antioxidants) said to help maintain healthy neurons (brain cells) and synapses (the connections between brain cells).

A medical food (a category defined by the FDA) can be marketed as treatment for a specific disease and aims to provide a nutritional means of treatment that cannot be derived from regular food consumption. For example, levels of glucose (an energy source) are reduced in the brains of people with Alzheimer’s. A product called Axona™, a powder mixed with water to make a beverage, aims to compensate for this reduction by providing an alternative source of energy to the brain. Axona is marketed as a medical food to treat Alzheimer’s. A controlled clinical trial of Axona in persons with Alzheimer’s suggested that there may be a cognitive benefit at 90 days, but this was not apparent after 180 days of treatment.

It is important to consult with your doctor about any possible risks or beneﬁts of these products. The use of nutraceuticals and medical foods may interfere with your participation in other hopeful clinical trials aimed at treating or slowing the progression of Alzheimer’s, so it is important to weigh your decisions carefully when exploring alternative therapies.

Medical foods require a prescription from a doctor. Medical foods are regulated by the FDA to some extent for

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My hands no longer obey my brain. It comes and goes.

Caring Tips From Individuals with Alzheimer’s Participants in the Alzheimer’s Association Colorado Chapter support groups for individuals with Alzheimer’s or a related disorder contributed the following tips to help others know ways of being helpful to someone with Alzheimer’s:

Avoid constant reminders that I am not moving fast enough. Remember it is a pleasure to have people visit. It helps if it’s a potluck and they wash the dishes.

Don’t plan too many things in one day.

The support of others gives me hope.

Give me time to try something; don’t take over.

We realize how important family and friends are and their sacriﬁce. It’s not pleasant to have Alzheimer’s, but we appreciate all that people do.

Talk to me directly.

Research Updates

Never ask, “Don’t you remember?” It makes me feel stupid and belittled.

Dominantly Inherited Alzheimer’s Disease Network (DIAN) Study

It is okay to use humor with us.

The National Institute on Aging (NIA) is funding a collaborative, international study that links research sites in the United States, England, and Australia in an effort to better understand the genetics of early-onset inherited Alzheimer’s disease (AD). This rare form of AD generally effects individuals under age 60 and often has an age of onset in the 30s or 40s. Multiple family members can be affected and children of these early-onset parents are at much greater risk of developing AD.

Please let me ﬁnish my thoughts without interrupting me. When I’m interrupted, I go blank. It is not “Old Timer’s disease.” We can be young and get it. It is not our fault. Have patience with me. I might have to review things three or four times. I don’t like it when they tell me they’re “caretakers.” Avoid giving orders or advice too much. Use please and thank you.

DIAN is a 6-year study that aims to enroll adult children of people with early-onset AD in order to identify the

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sequence of brain changes in these individuals before symptoms outwardly appear. Because these genetic forms of AD account for fewer than 5% of all cases, research into inherited early-onset AD has been hindered by diﬃculty getting enough people enrolled for research. This international collaboration attempts to overcome these barriers by enrolling participants from three countries in one study. Study participants will have genetic and cognitive testing and brain scans, and will also provide blood and cerebrospinal ﬂuid samples. By being able to gain greater understanding into the earliest possible changes in the brain of someone at risk for genetic early-onset AD, scientists hope to learn more about all forms of AD so that therapies can be developed to delay or even prevent disease progression.

the cocktail once a day, at breakfast, or a similarly packaged drink without the active ingredients (placebo). Although some results on memory performance were encouraging, there were no significant benefits in improved thinking or functioning in persons who received the supplement. Two additional trials with Souvenaid are now underway in the US and in Europe in the hopes of more promising results. Generic Form of Aricept Approved In December, 2009 the Food and Drug Administration (FDA) announced the approval of a generic version of Aricept that will be available through Mutual Pharmaceuticals at the end of 2010. The generic medication will dissolve on the tongue and be of particular benefit to persons with Alzheimer’s who have difficulty swallowing pills. Generic drugs are usually less expensive, too, which could provide welcome relief for those with high prescription drug bills.

Souvenaid Clinical Trial Results from a large randomized, double-blind, placebo-controlled, study of Souvenaid, a nutritional drink for people with Alzheimer’s, were recently published in the journal Alzheimer’s and Dementia. The objective of the trial was to restore synapses (the connections between brain cells) in persons with AD by providing a variety of nutrients which Souvenaid contains.

Helpful Resources 2008 Progress Report on Alzheimer’s Disease: Moving Discovery Forward Alzheimer’s disease research is moving forward in many scientiﬁc domains. Although progress can feel slow to those experiencing the impact of Alzheimer’s or a related disorder, each year there is progress made that

Researchers enrolled 225 people with mild AD who were randomly assigned to take a 125-milliliter dose of

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provides new knowledge to pave the way for advances in diagnosis, treatment, and perhaps one day, prevention of the disease. The National Institute on Aging is the primary Federal agency supporting research in Alzheimer’s disease and age-related cognitive change. The National Institute on Aging’s annual report on Alzheimer’s disease research is now available online.

for their families. It is important that families consider strategies for managing potential natural disasters and to have – to the extent possible – a plan of action in the event of an emergency. The Hartford Financial Services Group and the Massachusetts Institute of Technology (MIT) AgeLab created The Calm Before the Storm: Family Conversations about Disaster Planning, Caregiving, Alzheimer’s Disease, and Dementia, a comprehensive 40-page booklet to help persons with dementia and their families better plan for natural disasters. The booklet includes a wealth of helpful and thoughtful information as well as a variety of worksheets, checklists, and resources.

The latest report, 2008 Progress Report on Alzheimer’s Disease: Moving Forward in Discovery, summarizes current scientific directions and highlights findings from research funded by National Institutes of Health (NIA) through the year 2008. Highlighted topics include progress in laboratory science; genetic and non-genetics causes and risk factors; advances in methods of diagnosis; the search for effective therapies; updates in clinical trials; and coping and caregiver support.

The Memory Fitness Center A Comprehensive Activity Based Program

The Calm Before the Storm – Family Conversations about Disaster Planning, Caregiving, Alzheimer’s Disease, and Dementia

The Muller Center for Senior Health, Abington Memorial Hospital in Abington, Pennsylvania developed the Memory Fitness Center program in 2009. The Memory Fitness Center provides a program designed to reinforce memory skills of older adults experiencing memory loss and/or those who have been recently diagnosed with Alzheimer’s, a related dementia, or mild cognitive impairment. Participants in the program do not need the services of

The recent devastation in Haiti reminds everyone around the world that we are all vulnerable to the unpredictable and potentially tragic consequences of a natural disaster. Surviving and recovering from a disaster can create particular challenges for persons with Alzheimer’s or a related disorder and

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a traditional adult day program, and would in many cases feel out of place in such a setting. They do, however, need more support and more meaningfully structured activities than general senior centers provide.

“I didn’t think I could still solve a puzzle, but I did!” “Now I know I can still learn something new, and that makes a big diﬀerence to me. I feel good about doing something to help myself.”

The Memory Fitness Center provides sessions that are four hours long, three days each week. Participants choose their schedule. Activities provide cognitive stimulation, physical exercise, and an opportunity for socialization with peers. Program activities include games, puzzles, current events, music, exercise, book reviews, speakers, community outings, and intergenerational groups. These, along with support and friendship from others in the group, help participants feel more conﬁdent and comfortable in social situations.

Family care partners have also provided positive feedback. Comments include: “I see such a difference in my mother on the days she comes to the program; she is more alert and much more responsive.” “When Ed gets up on Tuesdays he wants to get ready quickly so he won’t miss his class; he has become much more confident.” “My mother even tries to answer questions on Jeopardy now; she says she feels she knows things again.” The Memory Fitness Center offers a monthly support group for those with memory loss and their family members. A facilitator leads each group meeting, enabling care partners and individuals with memory loss to meet separately with their peers and discuss feelings openly and honestly. Speakers are scheduled on topics of interest to group participants. The group is open to all in the community.

Family caregivers have noted that participants who had withdrawn from former activities are more comfortable resuming them. Participants also join our group activities with enthusiasm, taking pride in learning something new and in contributing to discussions. They state they look forward to the meetings and are eager to discover what each day’s activities entail. Comments include: “I love coming here; I look forward to it and I always feel good when I am here.”

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My shining days may be dimming, but life for me is not done. May God grant me peace, whatever those sunset days may bring, As I’ve always loved the sunset’s glow.

ALZ is Not About Me, You See By John Dana MacInnes ALZ is not about me, at least as far as I can see; ALZ is about those I love and how happy they can be.

ALZ is not about me, you see… ALZ is not about me… Editor’s note: John is a former Pastor and was President of United Community Services of Metropolitan Detroit. He served on the Board of Oakland Housing in Michigan and was President of his local Library Board of Trustees. He is now serving on the Alzheimer’s Association’s Early- Stage Advisory Group and resides in Michigan.

I have had my day in the sun, and am proud of what I have done; But now those days are on the wane, and others have their chance to shine. ALZ is not about me you see… Fondly I recall two wonderful marriages, both too short, and a loving family of children, grandchildren, and great-grandchildren; Long will I remember churches well-built, camps ﬁlled with children, and teens having a ball; And problems in an urban center made better one-by-one.

Brainstorming We asked people with early-stage Alzheimer’s: “What advice would you give to someone who is newly diagnosed with Alzheimer’s or a related disorder? “Don’t try to make big changes in your life right away. Things will change, but not all at once.”

Now I rejoice in seeing a library emerging into a whole fantastic new building, and a new team of trusted Trustees to guide its new day; Nor does Oakland Housing Inc. any longer depend on my prime as they have a great new leadership cadre and a vision that’s ﬁne.

“Find a support group so you know that you’re not the only one.” “Get out of the house, stay active, and meet people.” “Know that you can’t do everything on your own now and sometimes you don’t always know what you can or

You see, ALZ is not about me…

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cannot do. Don’t be afraid to ask for help when you need it”

Volume 15, Number 3: February - April, 2010

“Focus on doing things that you can do.”

We Can Make a Diﬀerence By Dutton Teague

“Don’t worry too much and don’t be ashamed. Alzheimer’s is something that happened that you can’t control. Don’t give up on having a good life!” “Be open about the transition you are going through. I know my wife will eventually have to do more of what I used to do (like the checkbook), but it’s gradual, so I’m including her more in the transitions.”

I have decided to share my story in the hopes that it might be helpful to others. In 1987, I was hired as the ﬁrst paid Executive Director of what was then the Greater Phoenix Chapter of the Alzheimer’s Association. I remained with the Chapter for more than ten years until my retirement in 1999. In March, 2008, I was diagnosed with early-stage Alzheimer’s and in early 2009, I became a Board member of what is now the Desert Southwest Chapter of the Alzheimer’s Association. I joined the Board as the Chapter was moving to develop a new core program for persons with early-stage dementia. I had decided I could make a contribution to others like me and to our care partners and families.

“Don’t think of it as a ‘take over’ when someone else oﬀers assistance. It’s a partnership when you get assistance. Become partners.” “Maintain a sense of humor! That’s the most important piece of advice of all!” Editor’s note: We gratefully acknowledge the participants of the early-stage support group at the University of California, San Diego Shiley-Marcos Alzheimer’s Disease Research Center for oﬀering this wise advice to others.

Because of my background with the Alzheimer’s Association, I had a working knowledge of Alzheimer’s and the disease process. It seems to me that each one of us who is diagnosed at an early stage has two choices. You can become preoccupied with what you have lost and are losing, and that will likely lead to despair or depression. Or, you can take stock of your remaining capabilities and decide how you can use

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them to build and enjoy the rest of your life. The latter is my choice.

one another during breaks. Most, if not all, did this and communication flowed very well. The Chapter has additional forums scheduled for other regions of Arizona and Nevada. I also spoke to the professional staff at the Banner Alzheimer's Institute in Phoenix about the need for doing more than just diagnosing persons and offering semi-annual sessions with a professional. I was distressed that I had met only four early-stage affected persons in about 20 months following my initial diagnosis. Banner has since initiated a six-session support group of 13 persons with early-stage Alzheimer’s that began in January and I was a member of the group. Our common concerns are: driving; telling others about the diagnosis; difficulty in understanding how to get where we are going; feeling isolated when family members and friends are reluctant to speak about the disease; and remembering names of people. Transportation is a major issue especially for persons without a spouse, significant other, or friends who drive.

My wife and I have reviewed our resources including family, friends, and the opportunities available to us, and we plan to use them to the fullest. One can still make a contribution to better our society in spite of the diagnosis. Several actions have been taken since I joined the Board of Directors of the Desert Southwest Chapter of the Alzheimer’s Association. The Board has now established early-stage programming as a new core area of services. The Chapter has held three successful forums for early-stage persons and their care partners in the greater Phoenix area and one forum in Tucson, Arizona. I thought that some of the participants were still in the process of "telling others," so following my presentation at the forum, I asked that aﬀected persons put a star on their nametags so we could quickly identify

One of my goals is to work toward getting assistance for aﬀected persons shortly after early-stage diagnosis. It is lonely out there following diagnosis. Once a week, I call two persons I have met just to touch base and be supportive.

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I am likely the most vocal Alzheimer’s Association Board member when discussing issues related to early-stage programming. I was inﬂuential in their changing the designation of “caregiver” to “care partner” when speaking about persons involved in early-stage dementia. I am very concerned that the Chapter and diagnostic facilities form working agreements to maximize referrals for support groups and other programming. I believe the major issue is connecting with doctors, physician groups, or medical facilities so that individuals and their families will have a resource following diagnosis. Members of my support group had virtually no information about the Chapter or its resources until I provided it.

background. I believe that involving aﬀected persons in volunteer work will assist them in reducing depression and despair, help them focus on their talents, and introduce hope by their contribution to society despite the diagnosis. Editor’s note: Deborah Schaus, Executive Director of the Desert Southwest Chapter of the Alzheimer’s Association shares how she believes Dutton has helped to shape early-stage issues at the Chapter: Dutton has been an essential part of our strategic planning work team around early-stage issues. He led us to recognize and/or implement the following: 1) We are in the process of holding town hall forums throughout Arizona and Southern Nevada to engage people with early-stage Alzheimer’s in helping us shape new services and activities that they want and need.

We need to develop new support groups for early-stage persons and their care partners. We also need to do outreach and develop programming for younger early- stage persons and their care partners.

2) We provided training to our Chapter staﬀ on early-stage Alzheimer’s issues.

I believe the impact of a potential volunteer pool of affected persons and families facing early-stage Alzheimer’s can be significant for Alzheimer’s Association chapters. The volunteer pool needs to be developed and staffed properly. In my support group at Banner Alzheimer’s Institute, we have a retired physician, three nurses, two former teachers, a clinical psychologist, and myself with a social work

3) We developed a new information kit resource and reading lists for people with early-stage Alzheimer’s who connect with us. 4) We are exploring ways to pair education with social support for couples facing early-stage Alzheimer’s together.

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Alzheimer’s disease usually begins in the area of the hippocampus, so it is thought that the olfactory bulb and sense of smell could easily be aﬀected in the early stages of Alzheimer’s, too. Indeed, many people with Alzheimer’s will describe changes in their ability to smell. Other things can also compromise the ability to smell or to identify smells including history of smoking, chronic sinusitis, or a current head cold. Loss of smell can also contribute to loss of the ability to detect taste. Some people with Alzheimer’s begin to prefer salty or sweet foods because they are easier to taste.

5) Because of Dutton’s advocacy, our Chapter expanded our ﬁve Core Programs to now include a sixth, focused entirely on early-stage needs. 6) At our Chapter’s Gala on February 13th, 2010, we introduced our new Early-Stage Core Program via Dutton’s inspiring thoughts in a video. Several attendees approached me immediately after seeing the video to share how positive Dutton’s message was about ﬁnding ways to live life to the fullest with early-stage Alzheimer’s. Donations we received immediately after showing the video raised an unprecedented amount of money that will help a great deal with developing our new earlystage services.

If your sense of smell is diminished, it is important to make sure your home has smoke alarms in case you can’t smell smoke in an emergency. Be careful about eating food that has been in the refrigerator too long as it may be hard to detect the smell of spoiled food. Watch the amount of salt you may add to food to enhance ﬂavor because excess salt can contribute to high blood pressure.

Questions and Answers Q. I don’t have much of a sense of smell anymore. Is this a symptom of Alzheimer’s? A. Researchers are studying the functioning of smell in persons with Alzheimer’s because loss of the ability to smell or identify smells is an early sign of a number of neurological diseases including Alzheimer’s and Parkinson’s.

New Resources Living Your Best with Early-Stage Alzheimer’s - An Essential Guide By Lisa Snyder, MSW, LCSW Foreword by Douglas Galasko, MD

Your olfactory bulb is a region of the brain responsible for the sense of smell. It is located very close to the hippocampus, a region of the brain associated with memory functioning.

Many people living with early-stage Alzheimer's or a related disorder want information about how to cope eﬀectively with memory loss and other

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symptoms and move forward with life. Almost all books are written to caregivers, and people with Alzheimer’s have long needed a comprehensive resource that addresses their own experiences and concerns.

16030 For discounted bulk orders, contact Karin Craig at Sunrise River Press at 800-895-4585.

I Still Enjoy A Good Laugh! A Guide for the Journey Through Alzheimer’s Disease

Living Your Best with Early-Stage Alzheimer's - An Essential Guide is a new 280-page book that is organized into 30 short, easy-to-read chapters on topics including: talking about the diagnosis; managing memory loss and other symptoms; ﬁnding meaningful activity; social and family relationships; maintaining hope and humor; updates in nutrition, exercise, and research; the unique needs of young-onset people or those who live alone; and much more. Each chapter ends with practical suggestions and discussion questions to facilitate conversation with loved ones or peers in early-stage programs.

By Sharon Gregoire, OTR/L If you need to rely on others for assistance or care, it is important that they understand a bit about your likes, dislikes, values, and wishes. I Still Enjoy A Good Laugh! - A Guide for the Journey Through Alzheimer’s Disease is a sensitive and unique 40-page workbook written by Sharon Gregoire, a very experienced occupational therapist. Use this workbook to write down important information that others can use to help you maintain your physical, emotional, and spiritual well-being including the activities you like, the personal objects you value, and life wisdoms you want to share. This provides others with a useful and personal tool to support your dignity and sense of self throughout the Alzheimer’s experience. Complete this workbook on your own or with the help of a loved one and it may open up very meaningful areas of discussion.

Written by Lisa Snyder, a social worker in the ﬁeld of Alzheimer’s for over 20 years, Living Your Best with Early-Stage Alzheimer’s is also ﬁlled with important messages from people with Alzheimer’s around the world who share their thoughts and advice on how to live a meaningful and satisfying life in the face of a challenging diagnosis. Living Your Best with Early-Stage Alzheimer’s – An Essential Guide is available in bookstores or online at http://www.amazon.com/Living-YourBest-Early-Stage-Alzheimers/dp/19347

Brainstorming We asked people with early-stage

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Alzheimer’s: “Why is it important to get an accurate and thorough diagnosis of memory problems?”

“My doctor said there are lots of reasons for memory loss so you need a good evaluation. I was depressed and that was making my memory worse. I’m on medication now and my memory is better although it hasn’t ﬁxed it completely.”

Here are some of the answers: “A diagnosis answers questions about what is happening to you and why. If you don’t know what you have, then you can’t learn ways to work around the problem.”

“I didn’t like being diagnosed with Alzheimer’s, but I’ve made friends as a result of it and that was unexpected.”

“Peer support – if you get a diagnosis, then you can try to ﬁnd others with the same problem to talk to.”

Between Us By Ken Saulter Losing my memory, losing it to disease, is getting to be a problem.

“My wife used to think I was ignoring her. Now she understands my problem is Alzheimer’s. She’s become more tolerant of my memory loss.”

Like when I’m in a group and people talk to me and suddenly I fall silent, while my brain skips a beat.

“If you get a diagnosis then your care partners can also get support and learn how to get help for themselves and for us.”

They, and I, know it’s not a simple senior moment. Eyes divert to shoe laces or thereabouts. The moment becomes one of palpable regret.

“If you know what is happening with your memory and you have a medical reason for the problem, you get less impatient with yourself when you mess up.”

So here I am, a fraction of a person, A clown without make-up or costume, waiting giant seconds to recover.

“I started participating in research once I got a diagnosis. You can’t enroll in clinical trials unless you have a good work up and diagnosis. I want to help and get help in whatever way I can.”

They say I will not remember these separation bricks in the wall that is, regrettably, being built between us.

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I worry about forgetting habits, like my gym locker combination, after 20 years of use, and my many passwords, and then, someday maybe, where I live; or maybe not.

progression of Alzheimer’s because it contains antibodies that may help to defend the brain against the damaging effects of beta amyloid protein (a protein involved in Alzheimer’s). Dr. Relkin presented preliminary findings from a small study of 24 participants that showed encouraging benefits in improved thinking and functioning as well as reduced brain atrophy (shrinkage) in persons receiving 18 months of IVIg treatment. Although the study was small, the findings are significant and exciting enough to warrant further study.

And, against our will, the wall gets higher and higher. But, I keep on living, trying to lower the wall or slow it down, or build a gate, or do something. kjsaulter@gmail.com; March 22, 2010. Ann Arbor, Michigan. Inspired by the poem “Tea Time,” in Slamming Open the Door by Kathleen Sheeder Boanno, Alice James Books, Farmington, ME, 2009.

IVIg is now going into a Phase 3 clinical trial with collaborative study sites across the United States. The study is recruiting persons with mild-to-moderate Alzheimer’s ages 50-to-89. For more information or to contact a study site near you, see the Clinical Trials website at: http://clinicaltrials.gov/ct2/show/NC T00818662

Research Updates Encouraging Preliminary Results from Intravenous Immune Globulin At the recent April 2010 American Academy of Neurology meeting held in Toronto, Canada, researcher Norm Relkin, MD, from Cornell University reported encouraging ﬁndings from a Phase 2 trial of Intravenous Immune Globulin (called IVIg or sometimes, IgIV) in people with mild-to-moderate Alzheimer’s.

My Name is Not Dementia Findings from a Survey on Quality of Life The Alzheimer’s Society recently reported on a research project carried out in collaboration with the Mental Health Foundation to explore the issue of quality of life in people with dementia. The research used literature review, interviews, focus groups, and a postal survey and included a total of 44

IVIg has been approved and used successfully for over 20 years to treat other medical conditions. IVIg is being investigated as a treatment to slow the

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people with dementia. Although this is a relatively small number, the findings are consistent with other research into factors that affect quality of life. The report identified ten significant influences on quality of life including (in order of importance):

Being Lost and Getting Found Disorientation and Alzheimer’s Spring is here and with warmer weather, many people look forward to being more active and getting outdoors for walks or other outings. One of the more frightening experiences of Alzheimer’s is the risk of becoming disoriented or lost in a previously familiar place. Memory loss or changes in vision and perception can make familiar environments look unfamiliar. Many people with early-stage Alzheimer’s continue to value their independence and making use of a few helpful strategies can increase your autonomy and safety.

1) Relationships or someone to talk to 2) Environment (feeling safe and secure) 3) Physical health 4) Sense of humor 5) Independence (being able to do things for oneself)

There are three helpful programs for people with memory loss that can assist you in getting home safely if you become lost, disoriented, or injured and can’t ﬁnd your way. These programs involve wearing an identiﬁcation bracelet, necklace, or tracking device that is linked to a national database that police or paramedics can access if you need assistance:

6) Ability to communicate (being listened to and being understood) 7) Sense of personal identity 8) Ability or opportunity to engage in activities 9) Ability to practice faith or religion 10) Experience of stigma (the desire to be treated sensitively and fairly)

• The Comfort Zone at 877-259-4850 or http://www.alz.org/comfortzone • Medic Alert/Safe Return at 888572-8566 or ﬁnd the information online at http://www.medicalert.org/safereturn • Project Lifesaver at 877-580-5433 or http://www.projectlifesaver.org

The report summarized that people in all stages of dementia are able to communicate about their needs and should be encouraged to do so.

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• My wife bought me a voice-activated cell phone that she has me carry and keep on. It’s easy to use because I don’t have to remember numbers to call someone. If I’m out and don’t come back on time, she can call me. We taped my home phone number to the back of the cell phone so someone can call my wife if I need help.

Although some people resist the idea of wearing a bracelet or a tracking device, many people with Alzheimer’s report an increased feeling of security and independence knowing that they can more easily be located if they are disoriented or have a spell of confusion. Other strategies to limit risk of becoming lost can be used to supplement these location systems. Some suggestions from people with Alzheimer’s include:

• I don’t go out of the house by myself in extreme weather. When I’m too warm or too cold, I don’t think clearly and I don’t want to get lost in bad weather.

• My son and I walk together every morning. We take the same route for the same amount of time. If I go alone, the route is familiar and I’m more likely to ﬁnd my way home. If I’m gone longer than usual, he knows to come looking for me.

• I carry a small pocket tape recorder to record reminders to myself about directions or where my car is parked. Discuss this topic with your peers and loved ones and you may come up with your own strategies to add to the list!

• I like to take walks by myself but sometimes my husband comes walking with me. He doesn’t give any directions. He just goes along to make sure I still know where I’m going. I don’t always like it, but I know he’s right to be concerned.

Revised from Snyder, L. Living Your Best with Early- Stage Alzheimer’s – An Essential Guide, Chapter 9 – “Strategies for Managing Memory Loss.”

• I carry an ID card with me when I go out that says who I am and where I live. • I got to know the neighbors on my walking route and told them about my Alzheimer’s so I can ask for directions or help if I feel lost.

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one year ago when I was receiving a citation for service in my hospital. I stood up to thank the presenters and found that I could not say a word.

Volume 15, Number 4 May – July, 2010 Reﬂections from a Physician Living with Alzheimer’s

It was my wife who insisted I go to the doctor for a diagnosis. As much as I was in denial and tried to dismiss my lapses as normal aging (doctors are often not willing patients), she knew something was wrong. My internist put me through a few memory tests in the oﬃce and then ordered a PET scan of the brain, which predicts Alzheimer's with 95% accuracy.

By Arthur Riven, MD I am a retired physician and an emeritus professor of medicine. I also have Alzheimer's disease. Before my diagnosis, I was certainly familiar with the disease, having seen patients with Alzheimer's over the years in my internal medicine practice. But I was slow to suspect my own aﬄiction.

After the diagnosis, I was started on a medicine called Aricept, which has been used for many years and which has many side effects. I had two of them — bad diarrhea and appetite loss. I'd had a few Alzheimer's patients in my practice who had taken this medicine with no benefit, so I wasn't expecting much. I wanted to abandon it because of the side effects, but my doctor urged me to continue. The side effects disappeared and another drug, Namenda, was added. These drugs are by no means miracle cures, and in many patients they have little effect. I was one of the rare lucky ones.

Now that I've been diagnosed, I can trace my problems back some 10 years, to when I was 76. I had been chairing a monthly program in medical ethics, and I knew most of the speakers and found it easy and enjoyable to introduce them. Then, suddenly, I found I had to rely on prepared material to make the introductions. I started to forget names, though never faces. These kinds of lapses are common in aging brains, so it was easy for me to write them oﬀ to "senior moments." In the following years, I had coronary surgery and then two TIAs (transient ischemic attacks), or small strokes. My neurologist attributed my problems to them, but my mind continued to deteriorate even though I had no more strokes. The ﬁnal blow was the occasion

In two months I was much better, and I am now close to normal. At my worst, I had diﬃculty speaking, did not know the names of my grandchildren or my doctor, could not add or subtract or ﬁnd

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my way home. Now I can do all these things. We've come a long way in our understanding of the disease since Dr. Alois Alzheimer, a German physician, ﬁrst established a link in the early 20th century between dementia and the presence of plaques and tangles of an unknown material. That material is now known to be the accumulation of a peptide called Beta-amyloid. The leading hypothesis for the mechanism of Alzheimer's disease is that Beta-amyloid accumulates in brain cells, leading to neurodegeneration.

something you want to recall later. When you cannot remember a name, make a joke and ask the person to repeat it, then write it down. Read books. Take walks. If you cannot walk, exercise in bed. Draw and paint. Garden, if you can. Do puzzles and games. Try new things. Organize your day. Learn to prepare food, eat, dress, wash, and go to bed in an eﬃcient way. Eat a healthful diet that includes ﬁsh twice a week, fruits and vegetables, and omega-3 fatty acids. A reliable and good-humored book on a serious subject is "The Memory Bible" by Dr. Gary Small.

Some pharmaceutical approaches are now targeted at clearing this protein from cells. However, amyloid plaques can be detected only in autopsy, so they have been associated only with people who had full-blown Alzheimer's symptoms. It is unknown whether these are the earliest biomarkers of the disease. Despite years of study, there is still so much we don't know.

Don't withdraw from your friends and your family. This is advice I had to learn the hard way. Afraid of being pitied, I tried to keep my condition a secret, and that meant pulling away from people I cared about. But now that I've decided to be open, I've been gratiﬁed to see how accepting people are and how willing to assist.

Editor’s note: Since Dr. Riven wrote this essay, there have been exciting advances in the ability to detect amyloid plaques in the brain during life through brain imaging.

For help with your own or a loved one's severe memory failure, the best source is the Alzheimer's Association, with oﬃces in most cities and a central oﬃce in Chicago. It has information about caregivers, treatments and research, and it exists to help. Its latest information is sobering.

But there are also things we are learning, some of them from personal journeys like my own. Since my improvement, I have developed a list of insights I'd like to share with others facing memory problems. Carry a small book and write notes whenever there's

There are currently 5.3 million Americans with the disease. It aﬀects one in eight people over 65, and almost

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half of those over 85. The number of people in the U.S. with Alzheimer's is expected to double by 2030.

Poetry Corner Editor’s note: The following poem is inspired by the author’s experience in his early-stage Alzheimer’s support group. Alzheimers

This rapidly growing problem has prompted pharmaceutical companies to join together in 2004 with the National Institutes of Health to form a partnership called the Alzheimer's Disease Neuroimaging Initiative. It is developing clinical trials and freely exchanging information about its results. Its ﬁndings will be reported to the public in July.

By Charles A. Berger We meet, this gang of oldtimers, To learn about this alzheimers Which draws us all together in this room. And while the most of us don’t know Just where our future road will go, We want to steer it clear of any gloom.

I know that I, like every other human, will eventually die. So I made myself aware of the documents that I needed to examine and sign while I was still able and alert, things like advance directives, living wills and POLSTs (physician's orders for life-sustaining treatment). I've tried to make sure that those who love me know my wishes. When I do not know who I am, or recognize anyone, and I am incapacitated with no chance of improvement, I want comfort and palliative care only.

So gather round, and get a dose, Then maybe you can diagnose The way to make your future ﬂowers bloom. And you will hear these others say How they have found a happy way To still enjoy the scent of life’s perfume.

Questions and Answers

Editor’s note: Dr. Rivin practiced internal medicine in Los Angeles and is a professor emeritus at UCLA. His essay was printed in the Los Angeles Times, June 27, 2010, and is printed in this issue of Perspectives with the author’s permission.

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Q. I don’t have a very good feeling for time. I can’t tell whether ten minutes or two hours have passed. Is this a common problem for people with Alzheimer’s?

Our sense of time is also inﬂuenced by our ability to read a clock and make sense of it. Alzheimer’s can interfere with the ability to understand how the hands or numbers on a clock represent actual time. Even though you can read the clock, it may not make much sense or accurately reﬂect how you experience time. Also in order to calculate how much time has passed, you may need to remember what time it was when you last looked at the clock so you can compare it with the current time. So, all of this can become quite confusing!

A. It is very common for peoplewith Alzheimer’s to have difficulty with issues related to time. This can be due to multiple different changes happening in the brain including changes in memory abilities and the ability to form concepts or ideas. Awareness of time is frequently related to memory, and Alzheimer’s significantly impacts short-term memory. We often judge the passing of time by remembering what happened in the prior moments. For example, if we just finished watching the evening news, we may recall that the news is a 30-minute program, so that is how much time has passed. But if Alzheimer’s affects your ability to remember what you did a few minutes ago, it may be hard to tell how much time has gone by. You may wonder, “What did I just watch and how long have I been sitting here in front of the television?” Or, if your wife goes out and says she’ll be back in an hour, you may not only forget that she told you that, but you may also forget what time it was when she left and where she said she was going. This can be troubling or worrisome and minutes can feel like hours.

Finally, Alzheimer’s and related disorders can aﬀect your circadian rhythm which is your 24-hour internal time clock that regulates your sleep cycles and helps you distinguish between day and night. Some people ﬁnd that they wake up at night and think that it is day or are not certain about the appropriate time to get up in the morning. Making sense of time is indeed a complex issue, but a few general tips include: Maintain a daily routine. When possible, try to do some daily activities at the same time each day and for a consistent amount of time. This can add helpful structure to the day and assist with awareness of time.

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If your loved one leaves the house, ask him or her to leave you with a written note next to the clock that says the estimated time of return to lessen any anxiety you may have about the passing of time.

Achieving Goals Through Cognitive Rehabilitation Linda Clare, PhD of Bangor University in the United Kingdom and colleagues recently reported in the American Journal of Geriatric Psychiatry on the benefits of eight weekly 1-hour individual sessions of cognitive rehabilitation for persons with early dementia that was catered to each participant’s personal goals. Examples of goals included: learning to use a cell phone; remembering names of people in a fitness class; or being able to do a particular household task. Participants who received training on their goal showed significant improvement in their chosen activity suggesting that with routine training and practice, people with mild dementia may be able to learn new tasks or improve performance on tasks that have become more challenging with memory loss. For information contact Linda Clare at l.clare@bangor.ac.uk.

If reading a watch face is becoming diﬃcult, consider getting a watch that speaks the time with the press of a button. Increased fatigue and stress levels can contribute to confusion about time and should be monitored as much as possible. Make sure to consult a doctor if you have persistently disrupted sleep cycles.

Research Updates Informative Website The news media often report on updates and findings in Alzheimer’s research and clinical trials. It can be hard for many people to make sense of these stories or to tell whether these are reputable findings and reports. The Alzheimer’s Association has recently launched a comprehensive new website that provides research updates and general information about Alzheimer’s and related disorders at: http://www.alz.org/research/. Although some of the information provided is directed to the scientific community, there is also much helpful information and interesting updates for the general public.

Alzheimer’s Breakthrough Ride Alzheimer’s researchers from around the country are riding their bicycles from California to DC to raise research funds and awareness for Alzheimer’s. On September 21st, World Alzheimer’s Day, the riders will gather at the Capitol in DC to deliver over 50,000 signatures supporting the Alzheimer’s Breakthrough Act. This Act aims to increase Alzheimer’s research

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funding at the National Institutes of Health (NIH) to 2 billion dollars annually. You can also track the progress of the Breakthrough Ride at: http://www.alz.org/research/breakthr oug hride/overview.asp. It is possible to sign the Alzheimer’s Breakthrough Act petition or sponsor a rider and raise funds for research at this website.

Rebecca Logsdon at logsdon@u.washington.edu. Logsdon, R.G., et.al. (2010) Early stage memory loss support groups: Outcomes from a randomized controlled clinical trial. Journal of Gerontology: Psychological Sciences and Social Sciences 2010.

Three Innovative Programs Explore the Theatre Arts

Beneﬁts of Early-Stage Support Groups

THE MEMORY ENSEMBLE ™ Rebecca Logsdon, PhD and colleagues at the University of Washington, Seattle, recently reported their findings from research into the effectiveness of a 9-week educational support group for persons with dementia and their care partners. The support group experience was particularly beneficial for the participants with dementia. Participants reported better quality of life and family communication, as well as reduced symptoms of depression on measures administered before and after the nine-week series and as compared with a control group. For more information, see the article reference below or email

By Mary O’Hara and Christine Dunford m-ohara@northwestern.edu The Northwestern Cognitive Neurology and Alzheimer’s Disease Center in Chicago and the Looking glass Theatre together developed The Memory Ensemble to provide a theatrical experience for persons with early stage Alzheimer’s disease and related disorders (ADRD). The program aims to oﬀer a unique, enriching, and healing experience to individuals with ADRD. Additional beneﬁts for participants include: social engagement; creative expression; engaging the mind/brain in newways; and

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enhanced conﬁdence, mood, and self-esteem.

The pilot project generated great interest for a second Memory Ensemble session, and we are seeking additional funding to help support and sustain the program.

The improvisational acting course offers instruction and exploration of improvisational theater specifically designed for people with early stage ADRD. Because the essence of improvisation is to “be in the moment”, this style of ensemble allows persons with memory loss to feel empowered, successful, and free from the concerns and stress of making mistakes or questioning decisions. While the first few weeks of class allow members to learn basic skills and to establish trust and comfort with each other and with the staff, the remaining weeks focus on sophisticated improvisational theater work.

IN THE LIMELIGHT By Jennifer Raingold education@artsdepot.co.uk Artsdepot is a thriving arts centre in North London, England, with a vibrant program of theatre, dance, music, exhibitions, talks, and classes. In 2009, we were awarded funding from The Learning Revolution Transformation Fund and Arts Council England's Older People's Fund to deliver a pilot theatre project for older people with dementia.

A 7-week pilot of the Memory Ensemble was launched in the summer of 2010. Meeting weekly for 90-minute sessions, classes were led by experienced teaching artists and managed/facilitated by social work staﬀ. Feedback from the ensemble members has been exceptionally positive. One member states, “It expands my whole thinking. It gives me a sense of wellbeing which in turn helps to enlarge my sense of wellbeing.” Another adds, “I’m not sure that my memory has objectively improved but I’m sure that my ability to cope with memory loss has improved.” Members also discussed how they enjoyed the cognitive challenge and stimulation of the improv exercises.

The workshops began in January, 2010 and were facilitated by Suzy Harvey and Harry Blake. The Alzheimer's Society and artsdepot provided hands on support during these sessions. “This is a chance for the participants to unleash their creativity, to play, to sing, to laugh, and to explore together,” says Suzy Harvey. “What I love about theatre is that there is no right or wrong answer and it gives space for people to come alive. It can be so empowering and this is particularly important for people with dementia.” The group explored reminiscence through drama using storytelling,

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music, and classic stories. During the 12-week project, they created and performed songs, sketches, and poems based on personal experiences. Participants recalled their wedding day, reminiscences from the war and tales of their childhood, and worked towards a ﬁnal performance in artsdepot's Studio Theatre.

and symptoms of illness and places the spotlight on the person whose life’s drama is now changed by dementia. The process is simple: As the facilitator, I ask an Early Stage Support Group the question, “What is it like to live with Alzheimer’s?” and the answers come in stories that capture feelings of frustration, hope, embarrassment, humor, and courage. These stories form the basis for the script written as a series of letters. I review the script with the group, and the writing and rewriting continues until the group feels ownership of the script. Four or ﬁve people from the group agree to be the readers. Rehearsals follow until the curtain goes up to an audience of care partners, peers, family, friends, and professional care providers. Following the performance there is a talkback session that has been known to last longer than the actual performance.

The ﬁnal performance was a powerful and touching experience for the 100-strong audience. Carers supported the participants to perform songs, and recite prose, and other prepared pieces on material from the workshop sessions. When the audience gave a standing ovation, the cast were visibly pleased with their achievements. "I'm taken aback by everything you've put into it,” said Pat. “You've made me feel very special." All of the participants want the project to continue and we are currently exploring funding avenues to make this happen.

The process may be simple but the outcome is transformative! For the participants, it is an opportunity to speak without being interrupted, and perhaps more importantly, to be heard, as is evident in the response of the audience. For a few of the participants it has led to a new career in advocacy for Alzheimer’s.

TO WHOM I MAY CONCERN By Maureen Matthews info@towhomimayconcern.org To Whom I May Concern® is a theater project that allows people with early Alzheimer’s or a related disorder to share their experience in their own words with an audience of people who are concerned about them. To Whom I May Concern® goes beyond the signs

The audience never fails to be touched by the performance. The wife of one of the performers said: “I thought I knew a

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lot about Alzheimer’s, but today I learned so much more.” A doctor responded: “Doctors need to see this.” And a woman in the audience who was aware of her own Alzheimer’s diagnosis recognized

her experience reﬂected in the words of the play when she said, “That was me!” Every performance is unique and reﬂects the people and community in which it is created. Please contact me for information on our upcoming video and website.

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Volume 16, Number 1: Fall, 2010 Full Circle: A Unique Conference for People with Early-Stage Dementia by Paulette Michaud, LCSW Understanding Common Non-Alzheimer’s Dementias Volume 16, Number 2: Winter, 2011 A Conversation with Manville Jennings by Manville Jennings and Melissa von Stein Torbay Dementia Leadership Group: A New Advocacy Group in Southwestern England Let’s Talk: Altering Attitudes about Alzheimer’s by Deb Bryer, RN Volume 16, Number 3: Spring, 2011 An International Alzheimer’s Family: Reflections on the 2010 Alzheimer’s Disease International Conference by Helga Rohra 27th International Conference of Alzheimer’s Disease International Traveling Safely with Memory Loss Creating Caring Partnerships

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Managing Your Finances: Helpful Methods for People with Early-Stage Memory Loss by James Lugannani New DVD Resource: From Scottish Dementia Working Group Volume 16, Number 4: Summer, 2011 Comments on My Life with Mild Cognitive Impairment by David Shay HABIT: Healthy Action to Benefit Independence and Thinking by Angela Lunde, MA Protecting Yourself from Financial Neglect and Abuse by James Lugannani

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Volume 16, Number 1: Fall, 2010 Full Circle A Unique Conference for People with Early-Stage Dementia By Paulette Michaud, LCSW Director Early–Stage Services

The day began with a warm welcome from Jed Levine, Executive Vice President and Director of Programs & Services, who noted that the New York City Chapter has come “Full Circle” from 10 years ago when we held our ﬁrst early-stage conference (that included caregivers). Jed was followed by our keynote speaker, Lisa Snyder, Director of the Quality of Life Programs at the University of California, San Diego’s Shiley-Marcos Alzheimer’s Research Center. Lisa has worked with people with early-stage dementia and their families for over 20 years and is the author of the new book Living Your Best with Early-Stage Alzheimer’s.

Alzheimer’s Association, New York City Chapter It was such a wonderful day! On November 12th, 41 people with earlystage dementia gathered at our New York City oﬃce for an all-day event that focused on ways to live their best. For the ﬁrst time, people with early-stage dementia from as far as Long Island, Upstate New York, and Connecticut were brought to a conference without their caregivers to learn and to share their thoughts and experiences about living life to the fullest.

The audience listened intently as Lisa talked about the three areas of well-being:

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1) Cognitive or mental well-being that results from being involved in meaningful activities and adopting positive and adaptive attitudes

rang loudly. They wrote a letter to their congressmen asking for increased dementia research funding. It was wonderful to hear the participants become impassioned advocates.

2) Physical well-being that relies on good eating habits, exercise, and adequate sleep

The second workshop given by Jed Levine focused on “Medications & Alternative Therapies.” Jed provided information about available medications for symptom management and talked about alternative approaches to healthy living that can improve quality of life. Everyone agreed that there are many things each of us can do to maintain a healthy lifestyle, in spite of having an early-stage diagnosis.

3) Emotional well-being that results from feeling a sense of purpose and value. Lisa encouraged considerable audience participation and she was not disappointed! The room came alive as people enthusiastically shared their thoughts and experiences about “living your best.” Erica Goldberg (from the Chapter oﬃce) was an invaluable scribe for the session so that participants had a written handout with the session material and their discussion contributions to take home with them. One participant later said, “I loved when we were all together talking about how we live our lives. I felt reassured being with so many other people like myself…it was really stimulating.”

The day ended with a wrap-up session in which everyone heartily agreed that we have to hold a conference just for persons with early-stage dementia each year. As one participant commented, “I would like to have more of this. Everything we did today was very valuable.” We can assure them that their voices will be heard! During the FULL CIRCLE plenary session with Lisa Snyder, participants responded to a series of questions throughout the discussion. The following are two of the questions and the audience responses:

Lou-Ellen Barkan, our President and CEO, shared her thoughts with the participants during a delicious lunch that was followed by two excellent afternoon workshops. “Let’s All Be Advocates” was led by Lauren Tiede and Paulette Michaud. Once again, the voices of our early-stage participants

What attitudes help you to live your best? •“Try to be positive towards other besides just yourself.”

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sense of community.” • “Liking the world, liking what’s around me, reaching out, it’s easy and it can be rewarding.”

•“After joining Paulette’s group, I ﬁnd that my brain is exercising in a way I never would have expected.”

• “Best thing I learned is to let it go. If I can’t remember something, just let it go and do it with ease.”

•“Aside from all the nice new people I met in the group, I also forgot about all the people I didn’t like!”

• “Good humor.” November 12, 2010 Dear Representative,

•“Making your expectations of yourself and other people reasonable.”

We write to you as people living with mild cognitive impairment or an early-stage memory disorder. There are 41 of us, your constituents from 14 districts, gathered today at the Alzheimer’s Association, New York City Chapter for the 10th Annual Early-Stage Persons Forum. We implore you to remember the words we have written below that express our deep commitment to advocating for increased funding for Alzheimer’s disease research. We ask that you keep us in the forefront of your mind come voting day.

•“Forgive those that make you upset because they have something insensitive to say about your condition. Then they can learn.” •“Central Park. I spend hours in the park. It is complete bliss. Appreciating beauty and nature.” •“There are so many people in this world who have it worse oﬀ than I do and I am very fortunate.” Has anything positive come out of Alzheimer’s?

“We want more funding!”

•“I was very serious and studious my whole life. But dementia changed my whole personality. I have a new sense of humor. I tell terrible jokes. But I have one trip here, so I’m going to go out laughing!”

“We are still viable and able human beings who function and are able to vote.” “Remember…we can vote you out!” “If you want our support, you have to support us.”

•“Finding a wonderful support group with a gifted leader. I have a greater

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“What if this were happening to you and your family?”

Thank you, Representative, for reading this letter. We appreciate your attention to this very important matter. We trust that you’ll remember our words going forward as you vote on bills that will beneﬁt all of us aﬀected by this illness.

“We need more funding to provide better programs and services.” “We need people to become more educated, and we need more classes in universities and medical schools that will teach people about Alzheimer’s disease, and how to help us.”

Sincerely, (All of the conference participants signed the letter.)

“The mind you save may be your own!”

Understanding Common Non-Alzheimer’s Dementias

“We need you to lower the age criteria for people who want to participate in clinical trials and research studies.”

The term “dementia” covers over 70 diﬀerent conditions that can result in changes in thinking abilities, behavior, and personality. The most common dementia is Alzheimer’s disease, accounting for between 60-70% of all cases. Other signiﬁcant causes of dementia, however, may not be as commonly acknowledged including Lewy Body dementia and Frontotemporal dementia. Individuals living with these dementias share many of the same concerns facing people with Alzheimer’s, but are also dealing with unique symptoms and challenges that warrant particular attention.

“Remember – people with Alzheimer’s disease and their families represent a huge block of voters.” “Baby boomers are aging and many are developing Alzheimer’s….you can no longer pretend this is not happening!” “You have to do more work to get rid of the stigma that’s attached to this illness.” “And ﬁnally……..PLEASE WAKE UP TO OUR CAUSE!!!”

Lewy Body Dementias

While we have a lot of demands, we would like to thank you for your work and votes to pass the Compassionate Allowances Initiative. It has greatly beneﬁted a lot of us who are living with early-onset dementia.

Lewy Body Dementia is one of the most common types of progressive dementia, aﬀecting an estimated 1.5 million individuals and their families in the United States. Lewy Body Dementia (LBD) is an umbrella term for two related diagnoses: Parkinson’s disease

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dementia and dementia with Lewy bodies.

Early and accurate diagnosis is important because some drugs commonly prescribed to treat Alzheimer’s symptoms can cause severe side-eﬀects in persons with LBD, while other Alzheimer’s medications may be helpful.

The earliest symptoms of these two dementias differ slightly, but ultimately, both result in the same set of challenges including: problems with visuospatial abilities (judging distance and depth), attention, and executive functioning (organization and planning). Fluctuations in confusion and alertness are also common, as are slower and more rigid movements. Some individuals develop Parkinson's-like tremor. Unlike in Alzheimer’s, visuospatial problems can be significant, and may occur before problems with memory or language. A person with DLB might sit down on the edge of chairs, fall, trip on stairs, misjudge distances while driving, or have difficulty drawing or writing. Visual hallucinations are also common.

People with LBD often need to make modiﬁcations to their environments to improve functioning and safety. Helpful interventions include: reducing clutter; taking extreme caution on stairs; installing grab rails in the bathroom; using a walking stick when outdoors; and discontinuing driving. Because movement may be slowed down considerably, it is important to allow for more time with daily activities to reduce stress. Some people with LBD beneﬁt from physical or occupational therapy to help maintain strength, coordination, and functional abilities.

Steve first noticed the onset of his symptoms while driving. He says, “I couldn’t figure out where I was going. I remembered how to get to places, the street names, and the addresses. My memory was fine, but it’s like I couldn’t see right - It’s a bit like being in a fishbowl. Everything looks a little off.”

Frontotemporal Dementias Frontotemporal dementia (FTD), also known as frontotemporal lobar degeneration (FTLD), usually develops in individuals under the age of 65, is the most common cause for young-onset dementia, and likely accounts for 10-20% of all dementia cases. Unlike Alzheimer’s that begins in areas of the brain responsible for memory, FTD damages the frontal and/or temporal regions of the brain that are associated

Because some LBD symptoms can resemble other more commonly known diseases like Alzheimer’s and Parkinson’s, only 30-50% of persons with LBD are accurately diagnosed.

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with language, behavior, emotions, judgment, movement, and the abilities needed to complete complex tasks that require multiple steps.

for these individuals to recognize familiar people or objects. Many people with FTD who have these language diﬃculties retain other thinking abilities and may try to develop ways to manage their communication challenges. Researchers at the University of California, San Francisco, have found that some individuals with semantic dementia can have considerable non-verbal creative abilities, including painting. In an article published in Alzheimer’s New Zealand’s, Alzheimer’s News, Graham, diagnosed with semantic dementia at age 59, states, “Dementia is like life: it never goes down a straight path for an individual of a family. I am currently following twists which were not planned for my future. It has been an interesting and challenging change.”

There are many subtypes of Frontotemporal dementia that can affect behavior (behavioral variant FTD) and language (primary progressive aphasia, progressive non-fluent aphasia, or semantic dementia). Other more rare forms of frontotemporal disorders primarily affect movement (progressive supranuclear palsy, for example). People with all forms of FTD may also have some slowness or rigidity in their movements or a tremor similar to Parkinson’s disease. Individuals with behavioral variant FTD can have very disruptive changes in social behavior and personality and may have little insight into these problems. These symptoms can be very challenging and they can struggle to function in social situations. Younger caregivers often have difficulty managing these challenges at home especially with job commitments.

Since FTD can include a complex set of symptoms that vary considerably from person-to-person, strategies for managing the condition may vary and it is important to seek help from professionals and peers who are familiar with this dementia.

People who have FTD in the form of aphasia are unable to find the right words to communicate effectively and eventually are unable to speak, while people with semantic dementia tend to lose ability to understand the meaning of words and may not comprehend simple words. It may also be difficult

Helpful Resources An Introduction to Lewy-Body Dementia From the Lewy Body Dementia Association This 12-page brochure is directed to newly diagnosed individuals and their families and provides a very

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general but helpful overview of the symptoms of Lewy Body Dementia (LBD) and some discussion of symptom management. Particular attention is given to the potentially dangerous side-eﬀects of common dementia medications on individuals with LBD and the importance of a thorough diagnostic evaluation.

Book Review The Japanese Therapists: Another Alzheimer’s Autobiography by Mike Livni Reviewed by Robyn Yale, LCSW Mike Livni has worked in dementia care for 22 years, serving on the boards of Alzheimer’s and Related Disorders Association in South Africa as well as Alzheimer’s Disease International (ADI). In the early 1990’s he became aware of my own work with early- stage support groups and was instrumental in bringing it to the ADI forum. While helping to advocate and raise awareness, he also began to facilitate early-stage groups for people with dementia and their families in South Africa. Now he has arrived at the pinnacle of a 10-year eﬀort to accurately diagnose his own symptoms of dementia, and would like others to hear of his ﬁrst-hand experiences.

Frontotemporal Disorders Information for Patients, Families, and Caregivers From The National Institute on Aging (NIA) and Alzheimer’s Disease Education and Referral (ADEAR) This 30-page booklet describes the three types of frontotemporal disorders including: behavioral variant frontotemporal dementia; primary progressive aphasia; and related progressive movement disorders. Informative tables are provided that help to distinguish the symptoms of each disorder and more detailed text provides helpful descriptions of these complex forms of dementia. Although there is currently no cure for these disorders, the booklet provides a practical discussion of symptom management including problems with behavior, language, and movement. Information and advice for caregivers and a list of resources are also included.

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symptoms were mild) for quite some time. The story unfolds around such themes as working through denial; maintaining independence vs. needing assistance; retaining one’s personhood; the ongoing impact on his relationship with his wife, colleagues, and others; and the search for and reaction to his diagnosis. Mike's ongoing reflections are posed to the only “therapists” he worked with during this process - Mr. Sanyo and Mr. Sony - who, being tape recorders, listened without judgment or criticism. The Japanese Therapists is a masterful weaving of Mike’s personal and professional backgrounds, the writing process with the impact of the disease, and the quest for a diagnosis with the journey to accept it. Because he wants us to understand what Alzheimer’s is like for him, he chose not to perfect the text in terms of editing and flow – so we witness in raw and authentic form how his thinking is affected by slowly progressing cognitive impairment. What may at first seem scattered and disorganized quickly becomes quite engaging. One must admire the skill and courage it took to persevere in recording his story while simultaneously facing and integrating his decline. We are with him “in real time” as he painstakingly writes the book while poignantly searching for answers that were unknowable (as

This is a unique and fascinating read that I highly recommend. Although experienced in the ﬁeld of early-stage dementia, I was educated and enriched by Mike’s interesting (and at times wildly funny!) anecdotes, clever musings, and honest expression of feelings. After championing early-stage work in his own country and internationally, Mike Livni now contributes to our understanding of the early dementia experience and reminds us of the power one can ﬁnd to cope with it. Robyn Yale is a clinical social worker and the author of Developing Support Groups for Individuals with Early-Stage Alzheimer’s Disease: Planning, Implementation, and Evaluation.

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Volume 16, Number 2: Winter, 2011 A Conversation with Manville Jennings By Manville Jennings and Melissa von Stein Manville Jennings is 58 years old and has been diagnosed with Posterior Cortical Atrophy, a dementia thought to be a variant of Alzheimer’s disease. Melissa von Stein is a Care Coordinator at the Rochester, New York Chapter of the Alzheimer’s Association. We hope this conversation conducted in Rochester in January, 2011 will help others who are going through similar situations.

MvS: When did you decide to go to the doctor?

MvS: When did you start to notice changes in yourself that made you question that something was wrong?

MJ: It took me nine months to sell our home in Portland, Oregon. When I got to Rochester, my wife could see that something was going on. She had me go to our primary care doctor. I told him about my symptoms. He pretty much knew what the problem was because the ﬁrst thing he did was to set me up with a specialist which led to my ﬁrst diagnosis.

MJ: It was about 3 years before my current diagnosis. I actually told my primary doctor when I was still in Portland, Oregon that I thought I was having cognitive issues but he attributed it to other things. I was having problems with basic math, spelling, reading, and writing.

MvS: What were your ﬁrst thoughts upon being diagnosed? MJ: Shocked, disappointed, worried about my wife and family, and what does this all mean?

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MvS: What is your understanding of Posterior Cortical Atrophy? MJ: It has changed since my ﬁrst diagnosis was Frontal Lobe Dementia. It's complicated because it’s somewhat rare. Right now I understand that instead of settling in the memory part of your brain, the Alzheimer’s settles in the vision part of your brain.

my point across or ask for help. Where I get frustrated is when I try to do things that were very easy for me and now they are not, such as writing like this. I also have problems with sequencing, like counting money and cooking. MvS: Have you employed any strategies for helping with these symptoms? MJ: Only that I try to recognize what I can do or cannot do at this time.

MvS: How has the diagnosis aﬀected you? MJ: First, it was good to know that I was not going crazy. That alone helped us to move forward and ﬁnd out what we had to do next. It allowed us to be proactive. I have had to be tested, get educated about my condition, and learn about living with Alzheimer’s.

MvS: What changes have you made in your life since your diagnosis? MJ: The one that had the most impact is not being able to do the work that I did for over 30 years. My background was in television broadcasting as a creative writer, producer, and director. Other than that, I try to continue doing things that I like to do such as staying active and ﬁnding ways to be productive.

MvS: What are the greatest challenges you encounter? MJ: I would say number one would be the type of Alzheimer's that I have. Communicating is always a challenge, as well as short-term memory and I have vision issues due to the type of Alzheimer’s that I have. When you add it all up it means that how I live my life today is very diﬀerent than it was a year ago and that it continues to change. So keeping up with it is a challenge every day, and I was only 57 when I was diagnosed.

MvS: What advice do you have for professionals? MJ: That’s easy. Find a cure. MvS: What sources of support have been most beneﬁcial to you? MJ: My wife, Laurene, is the most important person in my life right now. I cannot imagine being here without her help. The downside is the burden that she has to carry. We do have family on both sides that have been supportive

I try to take my time and not get frustrated and I either ﬁnd a way to get

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but she is here day in and day out managing our lives.

Cooperative Study (ADCS) for the following revised summaries of research updates that were originally published in the ADCS monthly e-newsletter.

My wife and I go to support groups and I have participated in "Visions & Voices" and "Early-Stage Advisory" through our local chapter of the Alzheimer’s Association and we have also participated in "Meet Me at the Mag," "Bed and Breakfast," and other events. We get a lot of helpful information. We also meet new people who are in the same boat. (Editor’s note: See the Rochester, New York chapter of the Alzheimer’s Association’s, website at http://www.alz.org/rochesterny/ to learn more about these programs.)

More Reasons to Walk Researchers from the University of Pittsburgh analyzed the relationship between walking and brain structure in 426 people including: 299 cognitively healthy adults; 83 people with Mild Cognitive Impairment (MCI); and 44 people with Alzheimer's. The researchers kept track of how far each study participant walked every week. After 10 years, all participants underwent a speciﬁc kind of MRI (brain imaging) exam that measures brain volume.

MvS: What do you feel is the greatest misconception about Alzheimer’s and related dementias like Posterior Cortical Atrophy?

When they entered the study in 1989-1990, participants were asked how many city blocks they walked in an average week, whether for exercise, chores, or any other reason. Follow-up questionnaires every three years showed that the number of blocks walked remained steady over time. In addition, participants were given the Mini-Mental State Exam (MMSE), a brief test of cognitive (thinking) skills, at various times throughout the study. The MMSE is used to help doctors make a diagnosis of MCI or Alzheimer's.

MJ: That this disease only aﬀects older people. MvS: Any other thoughts or concerns? MJ: I am glad that the National Alzheimer’s Association has been active and up front. I would like to see a more aggressive local grassroots eﬀort to put Alzheimer's on the front burner and to educate the public.

Research Updates Editor’s note: We are grateful to Michael Raﬁi, MD, PhD, Associate Medical Director of the Alzheimer’s Disease

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and may help to prevent onset of MCI or Alzheimer’s or slow rate of decline in persons who already have these memory disorders. New Prevention Initiative The Alzheimer’s Prevention Initiative is led by Eric Reiman, M.D., and Pierre Tariot, M.D., from Banner Alzheimer’s Institute in Arizona, in collaboration with the Arizona Alzheimer’s Consortium and other academic and scientiﬁc partners around the world. Through this initiative, researchers plan to conduct prevention trials in cognitively normal people who, based on their age and genetic background, are at the highest risk of developing memory and thinking diﬃculties. They are in the process of developing an Alzheimer's Prevention Registry, consisting of healthy people who may be interested in participating in upcoming prevention trials. If your friends or family members would like more information and updates about this global Alzheimer's Prevention Initiative or if they are interested in participating in Alzheimer's prevention trials, they can visit http://www.ADprevention.org or call (888) STOP-ALZ (toll free).

As shown by MRI, brain volume was preserved in healthy adults who walked at least 72 city blocks, or 6 miles, per week. MMSE scores showed walking six miles a week was associated with a 50% decline in Alzheimer's risk over 13 years. Walking more than 72 blocks a week offered no additional benefit. People with MCI or Alzheimer’s needed to walk at least 58 city blocks, or approximately 5 miles, per week to maintain brain volume and slow cognitive decline. Over 10 years, scores on the 30-point MMSE dropped by an average of five points in those diagnosed participants who were sedentary, compared with one point in those who walked 5 miles per week. The findings showed that greater amounts of physical activity were associated with greater brain volume

BRAINSTORMING We asked participants of the weekly early-stage Alzheimer’s support group at the University of California, San Diego’s Shiley-Marcos Alzheimer’s

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Disease Research Center: What are some of the ingredients that make up a good day for you?

together, but I still sew. My sons get a lot of handkerchiefs! And I like to mend things. I also paint every Saturday in a painting group.”

Here are the answers: “I get out of the house and listen to music while we’re in the car. I go out with someone who takes me to the kinds of places I like to go and I select the music while he’s driving. I like serious music – classical music. I’m interested in it and it stimulates my thinking.”

“Keeping our house in order in case someone comes by – I enjoy keeping things clean.” “A martini goes into making a good day! At my age, I just can’t have too much alcohol, but it’s a way of sitting down with my wife or friends and relaxing.”

“I still play tennis – I’m 91 and luckily I can still ﬁnd people to play with. I also like swimming. I feel better after a swim. It keeps me from sitting around and moping.”

“Sailing – There is nothing like it when you’re completely independent and relying on the wind.” “I walk and I go to the gym and that makes me feel better and makes for a good day.”

“My wife and I have a close relationship with our family, so that makes a good day when we talk on the phone or visit with them. Some of them live on the other side of the country so it gives us a good excuse to travel.”

“I don’t focus on losses as much as what is good and positive. I stay busy and go to work at my son’s business, and that’s good for me. My family treats me like a king and it’s a thrill to see them all of the time. Also, making someone smile is an important part of a good day for me.” “Eating! Going out to lunch.”

“Just getting out of bed in the morning and going out makes every day a good day.” “Getting chores done and completing what is planned and written down on the calendar. Then it feels like I’ve had a successful day.”

“I like to cook and garden. Ideally a recipe for a good day is half a day of activity, a quarter day of reading, and a quarter day of social time.”

“Working in the garden, sewing, and talking with my sister and my husband. I’ve forgotten how to put a pattern

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“Doing anything that you enjoy is an important ingredient to a good day. Have some fun!”

Also included are a brief overview on Alzheimer’s and tables that list ongoing federally-funded clinical trials.

Helpful Resources Taking Action Workbook

New Progress Report on Alzheimer’s Disease The National Institute on Aging’s latest annual report on Alzheimer’s research is now available. 2009 Progress Report on Alzheimer’s Disease: Translating New Knowledge, summarizes current scientiﬁc directions and highlights key ﬁndings from the National Institutes of Healthfunded Alzheimer’s research. Findings include:

The Taking Action Workbook, is a guide for people living with Mild Cognitive Impairment (MCI) or early Alzheimer’s that is available from the Alzheimer’s Association. This workbook is based on the belief that we cannot let limitations interfere with what we can still do. Persons with early-stage dementia can take charge of their own health and well-being. This workbook can be used alone, with family members, or with friends and is divided into 12 chapters that address common concerns and includes educational information and perspectives of people living with memory loss.

● discovery of new genes and biological mechanisms that cause Alzheimer’s ● earlier disease detection using neuroimaging and biomarkers ● links between Alzheimer’s and other age-related diseases ● lifestyle factors that may protect against Alzheimer’s ● successful cognitive aging ● clinical trials underway now to prevent or treat Alzheimer’s and cognitive decline

One reader says, “If my Mom and Dad would have had access to the simple, straightforward information contained in this workbook back in the late 1980’s, when Mom was ﬁrst experiencing symptoms of

● research-tested strategies to support caregivers

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early-onset Alzheimer’s, it could’ve made the next several years easier for both of them (and for their kids, of course). While preparing for living with this disease is so fraught with fear, working through the steps outlined could go a long way toward assuaging the accompanying anxiety about feeling out of control…..I am going to keep the knowledge that this resource exists close and will distribute it, as the need arises.”

edit the proposed content of the booklets and make them easier to understand from our point of view. We also invite dignitaries from the health service and local general practice doctors to our meetings which are held twice a month at the Alzheimer Society oﬃce in Torquay. Our goals for the future are to try and educate health workers that the need for long and lengthy paperwork is very unnecessary for Alzheimer’s patients when a few bullet points could say exactly the same thing. We also want to see doctors take a diﬀerent approach towards people with dementia, especially those with younger-onset dementia.

Torbay Dementia Leadership Group A New Advocacy Group in Southwestern England Editor’s note: The following information was submitted by Norm McNamara, chair of the Torbay Dementia Leadership Group. Also see his poem featured on this page.

For more information on this advocacy group, contact Norm McNamara at normmc1957@yahoo.co.uk.

The Torbay Dementia Leadership Group was set up in June, 2010 and is run by a membership of seven or eight people who all have a diagnosis of some form of dementia. We keep the number of members limited because with this illness, there would be far too many distractions with a large group. We work alongside the National Health Service of Torbay and also the Alzheimer Society and various dementia-related charities.

Poetry Corner All Seeing Eyes By Norm McNamara As the party started, I sit and watch with glee, The children running round, it’s clear for all to see, That in their little world, a world so full of fun, Excitement in their eyes, of a future still to come, The way they look at life, through excited eyes,

Our aim is to enrich and improve the lives of people living with dementia. One way we do this is by consulting on new booklets being published for people with dementia. We discuss and

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Never worrying about tomorrow, today is where it lies, We can learn so much from them, learn from day to day, That it’s now that really matters, whatever comes our way, My dementia is invisible; they don’t see what grownups see, They just see their grandad, as happy as can be, If only all us grownups, could do the very same, Just see the person standing there, without dementia`s name.

individuals receive friendly, supportive telephone calls from other individuals who have memory loss. Most programs for people with dementia are developed by social service or medical professionals and may include input from people with dementia. Let’s Talk, however, was conceived of by a person with dementia. Following a needs assessment through which people with memory loss and their family members identiﬁed service gaps, a task force was formed to develop new programs. One of the task force members was Ted Grazman. At the age of 61, he had been diagnosed with Alzheimer’s. Once diagnosed, Mr. Grazman wasn’t satisﬁed with sitting at home and waiting silently for his dementia to progress. He was committed to keeping his mind active and to helping others. He attended task force meetings, speaking passionately about a telephone- based peer support program he envisioned that would allow people with early- stage dementia to reach out to one another. Aided by one of his sons, Mr. Grazman developed his idea into a formal program proposal that he brought to the task force. The entire task force was won over. His proposal was used as the basis for a successful grant application, and Let’s Talk became a reality.

Editor’s note: Norman McNamara resides in Devon, Great Britain. He is author of the books More Than Words: Poems Written and Spoken by an Alzheimer’s Suﬀerer and Me and My Alzheimer’s. Both books are available online through I-Proclaim Bookstore at http://i-proclaimbookstore.com.

Let’s Talk Altering Attitudes about Alzheimer’s By Deb Bryer, RN “It makes me feel like I’m part of society again.” “It helps me know that I’m not alone in the struggle to keep my brain.” These quotes are from participants in Let’s Talk , an innovative program of the Alzheimer’s Association St. Louis, Missouri Chapter. Through this program, memory-impaired

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keep you happy. Find anything to do and keep doing it.” Let’ s Talk reaches individuals in rural areas, those who live alone, and those who can’t get out to attend other support programs. Currently, it serves people with early-stage memory loss in Missouri and in ten neighboring Illinois counties.

Since 2004, just as in Mr. Grazman’s vision, volunteers with early-stage memory loss have been coming to the Alzheimer's Association oﬃce in St. Louis where they make telephone calls to others with memory loss. Call volunteers and call recipients share coping strategies, provide emotional support, oﬀer friendship, and empower one another through sharing their personal experiences.

Volume 16, Number 3: Spring, 2011 An International Alzheimer’s Family Reﬂections on the 2010 Alzheimer’s Disease International Conference By Helga Rohra Editor’s note: Each year, Alzheimer’s Disease International (ADI) hosts a conference that brings together scientists, health care professionals, government and service providers, families, and other individuals interested in Alzheimer’s and related dementias. In the following essay, Helg Rohra, a German woman who lives with Lewy body dementia, speaks about her participation in ADI’s 25th annual conference held in Thessaloniki, Greece.

For the call recipients, it may be the one time they can talk to someone who really understands what they’re going through. One call recipient mentioned feeling shame about her diagnosis. The Let’ s Talk volunteer told her, “It’s nothing to be ashamed of. It’s just like if somebody broke their arm and it had to be in a cast. Nobody would say anything about that, would they?” Another volunteer, talking to a depressed call recipient said, “I don’t have anything to give you that’s golden, but don’t ever give up. Keep trying to ﬁnd something that will

Our registration for the international meeting took place in a quite luxurious lobby of the Grand Hotel, Thessaloniki. From the very moment you are

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welcomed, you can feel the importance of the meeting. Everything is organized up to the smallest detail. In the forthcoming days, well-known neurologists, carers, and all kind of experts in the field of Alzheimer’s and related forms of dementia will debate, present new figures, and inform the audience about the standings worldwide. There are many workshops, satellite symposiums, and exhibitions. You are amazed by all those people who represent Alzheimer's associations worldwide. You get the feeling of being welcomed by a big family! All those present want to get more information, want to get answers to questions troubling them about the disease. Finally, they want to get involved and believe firmly in the strength and solidarity in facing dementia.

I am wearing a badge. My name is written on it, as well as that of the Alzheimer Association in Germany– Munich, which I belong to. It is a special feeling overwhelming me: I know I am part of the big Alzheimer family. There are many talks with all of the other people aﬀected by dementia and I imagine they are all people like me, like you. Some have been living with a diagnosis for some years. There is a common fate. We are all united in our dementia. I never feel lost; together we are strong. This wonderful feeling accompanies me in all sessions, no matter whether it’s the workshops or the nice evenings. We, those touched by dementia, know it is important to speak up. We have to be respected, we are not only experiencing impairment, we can still do a lot. Just give us a chance, listen to us.

You realize how much is invested in research, you feel the endeavour of people’s work, and you learn about new approaches or ways of dealing with dementia in other countries.

No decision about us without us! A message I stood up for in the workshops. You know I felt very strong all of those days. I strive for the “mission dementia.”

You are grateful to the people who invited you. Of course, you speak up, you share with others your daily experience of living with dementia. You learn about the importance of nutrition, about physical and mental exercise, and not to forget social aspects and one’s own approach in dealing with the disease.

The ADI meeting had a very significant title: Dementia – Making a Difference. How true – yes, this difference we want to emphasise in our own countries. Believe it or not, it is a new consciousness of people affected by dementia.

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I myself am very confident. We ourselves have to speak up. It isn’t sufficient to talk about statistics or interpret computer animations of our brain. Please don’t forget our own self. Don’t always ask about our deficiencies; see our existing abilities. Talk to us!

practices in care for persons with dementia, and the use of creative practices, including literature and arts, to help describe the dementia experience. For more information on this conference, see the website: http://www.adi2012.org/en/home.asp x

I especially remember one workshop: “Ways of embedding people with dementia in social decisions.” I know together we are able to change ways of dealing with people with dementia. We are all a big family! I learned about the power of solidarity in dementia – a feeling that is still with me today. We go ahead and look forward to saying “Hello” and not “Goodbye” in Toronto in March 2011.

Traveling Safely with Memory Loss Travel and vacationing is a meaningful activity for many people with memory loss. “When I travel to a new place, it takes my mind oﬀ of all my worries,” says Al. “I see new things and have diﬀerent kinds of experiences than I do at home.” Alzheimer’s or a related disorder may have little impact on your enjoyment of travel, but you might need to modify travel plans somewhat. Memory loss, as well as being out of your normal routines, increases your risk of losing things or becoming fatigued or disoriented. Many people continue to travel on longer vacations or tour foreign countries, but if such trips become too challenging, short trips to a familiar destination can be satisfying. Consider taking a few small trips to see how you adjust before embarking on a longer trip to an unfamiliar place. The following travel tips may be helpful as you make plans:

27th International Conference of Alzheimer’s Disease International March 7-10, 2012 London, United Kingdom Helga Rohra’s essay speaks to the excitement and sense of international community inherent in the annual meetings of Alzheimer’s Disease International (ADI). While many international meetings are primarily scientific in focus, ADI is truly a meeting for anyone involved in, or affected by, Alzheimer’s or a related dementia, including those diagnosed. Next year’s meeting theme is “Science, Fact, Fiction” and will include scientific updates, best

• Simplify your travel itinerary. See fewer places in greater detail so you

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have more time to get accustomed to new surroundings. Some people enjoy small cruise ships because the boat provides a consistent place for sleeping and eating with the opportunity to dock at diﬀerent ports for day trips.

• Pack lightly so you are less likely to lose things. • Keep a simple diary or take photographs to help you recall each day’s events and special details of your trip.

• Schedule in “down time” when you are not on the go and can rest.

• Drink plenty of ﬂuids. Travel during any season can be dehydrating, resulting in worsened memory and confusion.

• Have identiﬁcation with you at all times. Check with your local Alzheimer’s organization for programs to enroll in, such as Medic-Alert/Safe Return or Project Lifesaver so you can receive assistance if you get lost or become separated from your group.

• Consider telling other travelers or your tour guides that you have Alzheimer’s. This may put everyone more at ease and allow others to help you if needed.

• When you go out, carry a business card from your hotel in case you get separated from your loved one or need to inform someone of where you are staying. Make sure to replace the card with a current one each time you change hotels.

Revised and reprinted with permission from “Living Your Best with Early Stage Alzheimer’s” by Lisa Snyder. Available at Sunrise River Press at 1-800-895-4585, in your local bookstore, or purchase online at http://www.amazon.com/Living-Your-BestEarly-Stage-Alzheimers/dp/1934716030.

• Bring a nightlight for your hotel bathroom so you can ﬁnd it in the dark.

Creating Caring Partnerships • Ask your doctor about a mild sleep aid to use if needed. Disrupted sleep and jet lag can increase confusion. Don’t use over-the-counter sleep aids without a doctor’s approval.

We frequently hear and read about Alzheimer’s “caregivers.” This word implies that others give care to the person with Alzheimer’s who receives it. In fact, many people with Alzheimer’s or a related dementia are quite capable of being caring to those who are trying to care for them. More recently, the term “care partners” has received some attention as a more

• Write postcards to friends and family. Ask them to keep them for you so you can have them as mementos.

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descriptive term for the relationships that can occur in the early-stages of a dementia.

hard not just on me but on those around me.” “Don’t always do things for the other person; partner with the other person so you accomplish things together. My wife and I do the bills together now and although she does the cooking, I try to do the dishes.”

We asked people living with Alzheimer’s or a related disorder: What are the qualities of a good care partner? Their following answers apply to all involved in the care partner experience whether you are the person with earlystage dementia or a loved one:

“Put on your ‘listening’ ears – it’s not enough to just hear someone. You have to pay attention and listen to their message without a lot of other distractions.”

“Don’t gang up on or crowd a care partner. It can be overwhelming if too many people are trying to help at once with too many diﬀerent ideas.”

“Adjust your expectations of each other. Sometimes my wife wants me to try to do something that I just don’t think I can do anymore. And sometimes I ask more of her and expect her to do too much or am not sensitive to everything she already does for me.”

“The ability to listen and not be talking all of the time is important in a respectful care partnership.” “A happy person – someone who smiles and tells an occasional joke.”

“Try to reduce each other’s stress level. Sometimes small acts of love or kindness go a long way.”

“It’s good to have things that you enjoy doing together – shared interests and activities make a more positive care partnership.”

“Look out for each other’s health. I need help with my medications because I forget what I have to take, but my husband needs to exercise so I make sure we walk every day.”

The ability to have open communication and say things that are important to you without the other person getting all worked up.”

“Good care partners know when to step in and when to back away. Everyone needs a little space and some peace and quiet.”

“Compassion is an essential ingredient in a care partnership – trying to understand what the other person may be going through. Alzheimer’s can be

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Questions and Answers • If you want to discuss concerns about your husband’s condition privately with the doctor at any time during your appointment, your doctor needs advance notice. Call and speak with the nurse or front oﬃce administrator to make sure the doctor receives this request.

Q. My husband has been diagnosed with early-stage Alzheimer’s and every time we go to the doctor, I feel like the doctor is sugar coating the situation and not being honest with us. It feeds our denial, but we need to cope with this. What can we do? A. It is not uncommon for doctors to “sugar coat” a diagnosis of Alzheimer’s or a related disorder because they fear that honest discussion will depress the person with memory loss. In fact, research from Brian Carpenter, PhD, at Washington University in St. Louis, Missouri reported quite diﬀerent ﬁndings. Patients who were told their diagnosis and given the opportunity for a caring and candid discussion with their doctor did not report higher levels of depression or anxiety. Many expressed relief at being given an explanation for their troubling problems and for the opportunity to discuss them openly.

• Give the doctor a clear description of a symptom or troubling behavior that you are trying to cope with including how often and when the problem occurs. This will help the doctor better advise you on coping methods or treatment options. The Alzheimer’s Association has a helpful booklet called “Partnering with Your Doctor” that you may want to review and share with your doctor. It is available at: http://www.alz.org/we_can_help_part ne ring_with_your_doctor.asp. Also, call your local Alzheimer’s Association chapter to obtain a copy of the “Principles for a Digniﬁed Diagnosis” that was written by persons with dementia for their doctors.

The following ideas may be helpful when consulting with your doctor:

Q. My sister who has Alzheimer’s takes the highest dose of Aricept (23 mg), but I recently read in the news that this might be dangerous. Is this true?

• Provide a uniﬁed message to your doctor that you and your husband can tolerate an open and honest discussion about Alzheimer’s. Are you and your husband in agreement about the level of honesty that you want with the doctor? If not, your doctor may stray on the side of caution in his discussions with you.

A. Some patients may be oﬀered a higher dose of Aricept by their physician if they tolerate the routine

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dose of 10 mg. and are hoping for greater improvement. The evidence of an increased benefit to higher dose Aricept for people with mild Alzheimer’s is not strong, however, and some people may have an increased risk of side effects. But given the few treatment options available to persons with Alzheimer’s, some patients want an opportunity to try anything that might improve their symptoms. As such, any medication decision is best reviewed with your physician who will need to determine the risks versus the possible benefits of any treatment. All responses to the medication should be monitored closely for either beneficial or dangerous side effects.

Handling money is often discussed in all- or-nothing terms; many believe you either have the capacity to handle money or you don't. In fact, you may be able to make some financial decisions, like paying for dinner, but not others, such as whether or not to sell your house. In the early stages of Alzheimer’s, this capacity can vary from day to day and changes over time. How can you arrange your financial affairs to retain control and independence, while preparing for the times when you will need help? Simplifying Your Financial Management It’s easy for our financial lives to get complicated with multiple credit cards, checking accounts, and investments. Simplifying your financial life can reduce burden on your memory and make it easier for others to help manage your finances, as needed. Ask your physician to evaluate your ability to handle your finances and ask family members, friends, or others you trust for assistance. Consider the following steps towards simplification:

Managing Your Finances Helpful Methods for People with Early-Stage Memory Loss By James Lugannani In this two-part series, we examine approaches to managing your ﬁnances. These steps will help you stay engaged, while allowing others to assist you as needed.

Simplify Banking and Checking

Most of us like to stay in control of our finances for as long as possible. However, managing money is difficult for many people. It requires memory, planning, judgment, and executing multiple steps. Alzheimer’s can interfere with these abilities and make financial management increasingly difficult.

Make a list of all your checking and saving accounts. Do you need every account? Now is a great time to consolidate. With fewer accounts, there’s less to forget.

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Auto‐Pay Your Bills

Stay Organized

Stop writing checks! Many bills – newspaper, utilities, rent/mortgage, satellite TV – can be paid directly from your checking account. Auto-pay is often safer, more reliable, and easier to keep track of than writing checks. Make a list of your bills. Call each company and tell them you want to begin auto-pay. Ask someone you trust to help with this if needed. Once you are registered for auto-pay, review your account every month to make sure your bills are correct, and that there is enough money in your checking account.

Once you have simplified your financial life, it is important to stay organized. You need to know that you have received your income, paid your bills, and received your bank and brokerage statements. That way you won't miss anything, you'll detect problems early, and you'll be able to solve problems quickly. You can use the list that you create of your bills and accounts as a means of keeping track of bill payments, income, and account statements. Reviewing your lists weekly or monthly can help to alert you or another trusted person as to when a bill is too big, a check is missing, or something else in your financial life needs attention.

Eliminate Waste Do you really need that magazine subscription that you don’t read anymore? When reviewing your bills, cancel things you don’t need! Your life will be simpler, and you’ll save money, too.

Make It a Habit It is important to make it a habit of paying attention to your ﬁnances – just like your daily exercise or taking your medications. If you pay attention, your loved ones and professional advisors will also be attentive and you may be able to remember more and participate in your ﬁnancial management longer.

Simplify Investments If you have accumulated different investments, loans, credit cards, and insurance, consider consolidating accounts. Making changes to your finances could have monetary, tax or legal implications, so get professional advice first. Many banks and brokerages have dedicated professionals who build personal relationships with you. You don’t need to remember user IDs and passwords for them to help you.

To supplement this article series, we are happy to provide you with a step-by-step guide and sample worksheets free of charge. You can request them by email at james.lugannani@ubs.com, or you may call me at 415-954-5956.

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• The potential and strengths of people with dementia • How communities can be ‘dementia friendly’ • The diﬃculties people with dementia experience and what professionals can do to make challenges easier • How involving and listening to people with dementia can enhance and develop the practice of staﬀ in dementia services

James Lugannani is a Financial Advisor at UBS Financial Services in San Francisco. He is proud to work with families and individuals with cognitive and physical disabilities.

The 44-minute DVD features seven members of the Scottish Dementia Working Group who speak about their experiences of living with dementia. It is aimed at dementia care professionals, as well as all health professionals and the general public. It can also be viewed by people with dementia to help them realize that they are not alone and there are ways to cope.

©James Lugannani 2011

New DVD Resource From Scottish Dementia Working Group Scottish Dementia Working Group is an advocacy and awareness-raising group whose members all have a diagnosis of some form of dementia. The group has produced a DVD entitled “Through Our Eyes” to help raise awareness and understanding of:

Volume 16, Number 4: Summer, 2011 Comments on My Life with Mild Cognitive Impairment By David Shay

• The varied experiences of dementia

Editor’s note: David Shay is a retired business management consultant who has advised large corporations both nationally and internationally. Two years ago, he was diagnosed with Mild Cognitive Impairment (MCI). He resides in San Diego, California.

• How people adapt and use coping strategies for living with their dementia

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When did you (or someone else) become aware that you were having memory problems? In fall of 2008, I met with a neurologist, Dr. Mike Raﬁi. I still have my notes from that meeting. I told him that my wife, Maria, thought I was making too many entries on my daily “To Do” list, and she wondered how many I was completing. Also, when others (mostly my wife) would ask me about my forgetfulness, sometimes I would get agitated and if pressed, I could get angry which was leading to heightened tensions.

Every time I open my datebook, I deliberately look at the visible 7 days. That way, I am reinforcing what I’ll be doing for the next several days so I won’t be surprised that I have 2 appointments tomorrow. I’ll remember the times and the person much better that way. As the close of the week creeps in, I’ll start to look at next week’s schedule, too.

What adaptations have you made to help you cope with memory loss? I still write “To Do” lists, but often note who wants it (e.g. “pay Citibank”); what the expected content & outcome should be; and why, when, and where (if appropriate). I also now use a datebook, which has ample room per day to write the time as well as pieces of who, what, why, when, and where, as needed. If it is a doctor’s visit, I often write the assistant’s name so I can be more cordial. I carry that date book in my pocket ALL day, so that I can make appointments if someone calls and not double book myself.

What is the hardest part about having MCI? If someone puts me under pressure to remember an appointment, issue, or location of an item, it can almost become impossible to retrieve the information. I will ask the person to give me some time (not under pressure) and then I can generally respond rather quickly.

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Has anything good come out of having

adding to the body of knowledge. Join any research study you can, whether it will beneﬁt yourself or not. You will feel much better if you do.

MCI? I have always enjoyed helping others and now that I’m in a support group and being recognized for my contributions, I am fulﬁlling my “social service” needs again.

Also, join a support group with folks having similar problems. Contribute to your support group in any way you can. In one of our weekly meetings I tracked that during one ﬁve-minute period, our group members (there were 12 that week) shared deep feelings about themselves 15 times and also laughed 25 times!

You recently joined a support group for persons with MCI or early-stage Alzheimer’s. What has been your experience with the group thus far? I enjoy the meetings in which I interface with some folks with deep Alzheimer's issues, and we laugh a lot and have solid social interactions. I don’t fear getting Alzheimer's as I did before.

Unfortunately there are few support groups for people with memory loss around the country. In our local listings of support groups in the San Diego County area, there are approximately 60 groups for caregivers, but only two (or 3%) for the person with MCI or early Alzheimer’s. I suggest immediate action!

You've recently volunteered to participate in research. How do you hope to beneﬁt from this? I may not beneﬁt in my lifetime, but it is important to me that I contribute to the body of knowledge that may help me and others.

What advice would you give to friends and family about ways to assist a person with memory loss? Avoid circumstances that put us under pressure! Also, friends of the person with memory loss should be encouraged to give their name when they make a phone call or meet on the street because the person with memory loss may not be able to remember your name. My wife and I wrote a letter to friends and family keeping them up to date on what is going on. It was the best way to

What advice would you give to others living with MCI or early-stage Alzheimer’s? Get a good doctor who participates actively in current studies, who continually follows the promising studies out there, and is constantly on the outlook for new studies to track or involve you in – studies that may beneﬁt yourself and/or others by

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request that friends or family members identify their name when communicating with me.

booklet provide meaningful reﬂections on living with Alzheimer’s. Mild Cognitive Impairment

Friends and family need to recognize that they can’t control the course of our memory condition, but they can team with us rather than attempting to control us. My wife used to come to me and say, “Where is the bill from Macy’s? I need to see it (now)!” She is learning not to put me under pressure. She allows me more time to ﬁnd things or follow through with a request. This helps me to function much better and I can ﬁnd things more promptly.

What do we do now? The Center for Gerontology at Virginia Tech has available a helpful 6-page pamphlet on Mild Cognitive Impairment (MCI) that provides concise information for those diagnosed with MCI and their loved ones. Topics brieﬂy addressed include: deﬁning and diagnosing MCI; recognizing signs and symptoms; reactions to MCI; strategies for compensating for memory loss; planning for the future; and caring for the care partner.

Online Resources Help and Hope For persons diagnosed with Alzheimer’s disease and related disorders

The pamphlet is based on interviews with 99 families in which one member was diagnosed with MCI. Although the pamphlet was originally published in 2006, the material is certainly still timely and relevant.

This 15-page booklet is published by the Northern California/Northern Nevada Chapter of the Alzheimer’s Association and is written for the person with Alzheimer’s or a related dementia. The booklet’s basic and practical information includes helpful summaries about important topics including: getting a diagnosis; talking to others; taking care of yourself; acknowledging feelings; safety; planning for the future; the unique needs of younger people with dementia; and helpful resources.

HABIT Healthy Action to Beneﬁt Independence and Thinking By Angela Lunde, MA “I remember the day that we were given the diagnosis of mild cognitive impairment - it's as if somebody kicks you right in the solar plexus. It's like, oh my gosh, you know, life as I have known it just ended.”

A number of brief messages from persons with dementia at the end of the

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Shortly after he received his diagnosis, Bob and his wife Shirley made the decision to participate in Mayo Clinic’s new HABIT (Healthy Action to Beneﬁt Independence and Thinking) Program. The ten-day (50-hour) HABIT program enrolls both the person with early-stage memory loss and a program partner and involves daily memory compensation training, brain ﬁtness activities, supportive therapy, wellness education, and a yoga program.

Participants in the program receive training on how to use a daily memory tool which oﬀers them greater independence and less reliance on others. This can reduce stress for loved ones, as well. “The tool I learned in HABIT helps me with everything,” says Bob, “It’s a daily reminder of who people are, the kinds of things I do, what I need to do and important current events. I can even tell you where the Twins baseball team is at. I can't say enough about the skills that I learned in HABIT and the support I received.” HABIT beneﬁts the support partner just as much as the person with memory problems. Many spouses are starting to face the emotional challenges of accepting the diagnosis and moving through the process of adapting to a new normal. Participation in HABIT can help support partners gain both a sense of empowerment and an appreciation for living fully in the present.

Bob and wife Shirley checking the HABIT calendar for useful information HABIT is based on the understanding that people with early cognitive impairment can develop new habits. “We all have ‘habit memory’, otherwise known as procedural memory. This type of memory is preserved even as other aspects of your memory decline,” says Glenn Smith, PhD, Program Founder and Director. “So, in the program, we capitalize on ‘habit’ memory to compensate for the losses associated with mild cognitive impairment and early-stage Alzheimer’s.”

In addition, persons with memory loss gain a renewed sense that they are beautifully complete individuals with rich experiences and accomplishments. And a diagnosis of memory loss doesn't strip that away. "I ﬁnd memory loss is in some way very freeing. You don't have to remember yesterday or tomorrow, you just live today,” says a former HABIT participant.

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WELLNESS EDUCATION HABIT includes the following ﬁve components in the program:

Overall wellness education is also a focus of the program. Topics include: brain healthy diets and supplements; exercise; and sleep hygiene. Participants are given information about the benefits and limitations of brain fitness products and an overview of new technologies that can offer greater independence.

MEMORY COMPENSATION TRAINING Participants learn to incorporate a memory tracking and organization tool into their daily routine and learn habits that can minimize memory loss and improve independence.

Angela Lunde, MA, is a dementia education specialist in the Mayo Clinic's Alzheimer's Disease Research Center in Rochester, Minnesota. She delivers the supportive therapy and yoga sessions for HABIT participants.

BRAIN FITNESS Participants sample a computerized brain ﬁtness program and learn about dozens of brain-training books, computer games, and websites that are now available that may help to improve focus, speed of processing, and memory.

Research Update The Importance of a Good Night’s Sleep

SUPPORTIVE THERAPY Group discussions provide a safe and conﬁdential setting for persons with MCI and their partners to express concerns, meet others, and gain insights into the changes and challenges of memory loss. Ample and uninterrupted supplies of oxygen are essential for brain health. Oxygen to the brain is reduced by “sleep apnea” a condition whereby an individual has abnormal pauses in his or her breathing during sleep. Although the heart does not stop pumping, the ﬂow of oxygen to the brain is interrupted. Common symptoms of sleep apnea include loud

YOGA Research suggests that a regular exercise routine can help to prevent memory loss. In addition, yoga and meditation can reduce stress and anxiety, lower blood pressure, and improve ﬂexibility and balance.

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or chronic snoring and abrupt awakening from sleep with associated gasping for air. Persons with sleep apnea may also have increased daytime fatigue, irritability, or diﬃculties with memory or concentration.

People with early-stage dementia are especially vulnerable to ﬁnancial neglect or abuse, including:

CPAP (continuous positive airway pressure) is a common treatment for persons with certain forms of sleep apnea. This device worn during sleep provides continuous oxygen ﬂow to the brain. Previous research ﬁndings (Ancoli-Israel, 2008 and Cooke, 2009) suggest that CPAP treatment may slow or improve cognitive (thinking) problems in persons with Alzheimer’s.

•Neglect or Incompetence: Someone you trust to handle your money is neglectful or incapable.

•Fraud: Theft or embezzlement by family, friends, or strangers

•Forgetting: Losing track of your property. If you forget you have a bank account, it’s as good as lost. All of these risks can result in significant financial loss. It is crucial to have a plan to address these concerns. In this article, we’ll focus on steps you can take in advance to reduce these risks. Please discuss your ability to make these decisions with your physician first.

Kristine Yaffe, MD and colleagues recently reported findings in the Journal of the American Medical Association suggesting that the oxygen loss associated with sleep apnea during nighttime sleeping may be linked to increased risk for mild cognitive impairment (MCI) or Alzheimer’s. These findings support the importance of evaluation and treatment of sleep apnea for healthy brain function.

I. Get Organized! The ﬁrst step to protect yourself from ﬁnancial neglect or abuse is to get organized: Assemble your Finance Team

Protecting Yourself from Financial Neglect and Abuse

Choose several trusted individuals who work well together, who will help you watch over your finances, and who you trust. Assign different responsibilities to each person – e.g. bookkeeping, check preparation, check signing, and financial statement review – so that no individual can control your entire financial life. By having these ‘checks and balances’

By James Lugannani This article is Part 2 of a two-part series on managing and protecting your ﬁnances.

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in place, it makes it harder for someone on your team to commit fraud or neglect.

Ask your Finance Team to assist you. Your attorney should be consulted for legal advice.

Diversify your accounts

Powers of Attorney

Having multiple bank accounts makes it harder for any “bad guy” to access all your money at once.

You can authorize another person to act on your behalf. The power can be limited (another person can only do some things, defined by you), or the power can be general (another person can do anything). If you are not comfortable granting Power of Attorney for your entire financial life, many financial institutions have forms that apply to just a single account. For example, you may want someone to help you with a single checking account, but not all your accounts.

Practice good “ﬁnancial hygiene” Take your time making ﬁnancial decisions. Make it a policy to say, “I can’t decide by myself. I have to check with my [accountant, son, wife, etc.]”. Abuse can occur when the “bad guys” press you to make an immediate decision. Making it clear you won’t make a snap decision, and that you have others watching out for you, will send the “bad guys” away.

Extra Signer You can give someone else the right to sign checks on a speciﬁc account. Extra signers can sign checks, but that’s all. They don’t share ownership in the account and they can’t open a new account or close the account. (This also works with credit cards.)

Keep track of your ﬁnances In last quarter’s article, we asked you to prepare a list of all your ﬁnancial relationships – bank accounts, brokerage accounts, insurance policies, bills, income (pension, Social Security, etc.). Ask your Finance Team to keep track of the list, so as not to lose any accounts.

Right of Inquiry You can permit people to inquire about your account (e.g. ask about a balance, or if a check has been deposited), but not authorize them to take action (e.g. check signing, selling securities, etc.). This can be handy if, for example, you want your bookkeeper to be able to make inquiries about your account.

II. Setting up Your Financial Relationships Enable your Finance Team to work with your ﬁnancial relationships (banks, brokerage accounts, etc.). Here are some of the tools you can use. Choose the tools that are right for your situation.

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IV. What Should Someone Do if They Duplicate Statements

Suspect Abuse or Neglect?

You can authorize certain people to receive duplicate copies of statements. For example, you may want one of your Finance Team to receive copies of your bank and credit card statements so that they can review the statements and make sure income and spending are OK.

• Discuss their concerns with you or a member of your Finance Team • Contact a local elder abuse agency. In the United States, www.ncea.aoa.gov provides many resources. • Contact the police.

III. Early Detection Your Finance Team should help protect you from neglect and abuse. Some warning signs are:

V. Conclusion There is no perfect way to prevent ﬁnancial abuse and neglect, but these steps will make it harder for any “bad guys.” To supplement this article series, we are happy to provide you with a step-by-step guide and sample worksheets free of charge.

• Sudden changes in your accounts • Unexplained changes in your will • Large payments or transfer to others

You can request them by email at james.lugannani@ubs.com, or you may call me at 415-954-5956.

• Telephone calls from banks or brokerage companies investigating unusual or suspicious activities

James Lugannani is a Financial Advisor at UBS Financial Services in San Francisco. He is proud to work with families and individuals with cognitive and physical disabilities.

• Your or anyone's suspicions about neglect and abuse Discuss this with your Finance Team and everyone who cares about you! Tell them to speak up if they ever suspect abuse!

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Volume 17, Number 1: Fall, 2011 A Life Worth Living Storytelling Program Improves Quality of Life by Anne Basting, PhD Maintaining Hope and a Sense of Humor Volume 17, Number 2:Winter, 2012 Here and Now by Lou Bordisso Staying in Touch and on Track Innovative Programs: Using Photography and Film Volume 17, Number 3: Spring, 2012 How Alzheimer’s Has Changed My Life by Robin Leckie A Different Kind of Business Card The Unforgettables: A Chorus for People with Dementia and Their Family Members by Mary Mittelman, DrPH

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Volume 17, Number 4: Summer, 2012 Exercise is Still Good for You: Finding Meaning in Movement Plan For the Future But Live in the “Now” by Charles G. Warner Discovering Memories at the Movies

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My friends make life worth living – especially old friends who still remember! They brighten my life with the history and stories we share.”

Volume 17, Number 1: Fall, 2011 A Life Worth Living Inspired by Participants of the

“Having good health. I may have Alzheimer’s, but at least it doesn’t hurt or cause a lot of physical discomfort and the rest of my body is going strong.” “Flowers and the beauty of nature. There is so much beauty around us. It’s worth taking the time to pause and ﬁnd some beauty in each day.”

Early-Stage Support Group at the University of California, San Diego, Shiley-Marcos Alzheimer’s Disease Research Center Editor’s note: As the end of a year draws to a close, it can be a time to pause and reﬂect on some of the things that contribute to a life worth living. Sometimes the daily experiences of Alzheimer’s or a related disorder can overshadow all of the rich possibilities inherent in each day. The following messages come from support group participants with Alzheimer’s in response to the question: “What makes life worth living?”

“My wife. She’s a peach. She is always there to help people when they need help, and now it’s me who needs help. I’m so fortunate to have her by my side.” “All of our caregivers! Where would we be without them? We have to make sure to give thanks for all of the people who help us because it would be hard to make it without them.”

As you read these responses, think about how you and your loved ones would answer this question and make sure to take these thoughts with you into the New Year!

“My grandchildren make life worth living. They’re happy and lively and they remind me of the better parts of my own childhood. When we’re together, my grandchildren take me by the hand

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and look out for me. And when I get a message from them on my computer that says, ‘I love you and I miss you’ – wow, that makes me feel really good.”

makes life worth living. Hey, I like to help the economy!” “Good food is always a pleasure that we shouldn’t take for granted. I can’t remember a lot of things, but I can enjoy a great meal of some of my favorite things and feel on top of the world.”

“Popcorn at the movies! If it’s a lousy movie, you can still have good popcorn. Sometimes it’s the little things in life – and appreciating them – that makes life worth living.”

“I think this support group makes life worth living. There is nothing like meeting with my friends in this group each week and knowing that I have this community where I can be myself and not worry about making a mistake or having trouble with getting a thought out. It’s a highlight of my week and I wouldn’t miss it for anything.”

“Watching a soccer match and having a pint of Guinness during the match. It makes you really feel alive when you’re watching a good game.” “Having something meaningful to do each day or something to be involved in makes life worth living. I like my exercise group because it gets me up and out and no one cares if you have a good memory when you’re exercising! I think it’s good for my body and my mind to exercise each day. And volunteer work – I can still help out at the church and that makes me feel like I’m worth something.”

“Look, we have a lot to be grateful for. There are a whole lot of people in this world who are far less fortunate than we are. So, we go on living the best we can and give thanks for each day we’re given.”

Questions And Answers Q. I have a real sweet tooth now and my wife says I’m eating a lot more sweets than I ever used to. Is this part of having Alzheimer’s?

“My dog. He anticipates diﬀerent things and tries to communicate with me. I feel complete relaxation when I’m with my dog. I can say whatever I want to him and he’s a really good listener. Even if I’m having a down day, he perks me up and life looks brighter.”

A. Many people with Alzheimer’s ﬁnd that they have more of a sweet tooth and may be drawn to cookies, candies, or ice cream. Sometimes the ability to detect ﬂavors can be dulled for people with Alzheimer’s, but sweet tastes can still be pleasurable. Or for

“Getting out – especially to a place that has a good sale going on. That always

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some, sweets harken back to childhood times and are associated with happy memories around special treats or foods.

changes that could lower the impact of disease symptoms and improve day-to-day living. To download the Living Well Workbook (FREE of charge), go to: www.alz.org/mnnd/. Click onto “Local Resources for People with Dementia” and scroll down to “Early Stage Resources.”

An occasional treat is not likely to be harmful unless you are medically advised to reduce or avoid sugar intake. However, excess sweets can dull your appetite for more nourishing food, throw blood sugar levels out of balance, and contribute to signiﬁcant shifts in mood or energy. So it is wise not to overindulge!

New By Us For Us© Guide The By Us For Us© Guides are published at the University of Waterloo, Ontario, Canada, by the Murray Alzheimer Research and Education Program (MAREP). These guides are written by and for persons with dementia and cover a range of topics. The sixth By Us For Us© Guide, titled Living and Celebrating Life Through Leisure has recently been released and discusses the diﬀerent ways that persons with dementia and their loved ones can continue to enjoy meaningful and enjoyable leisure activities together. Leisure can encompass many kinds of activities including those that provide: opportunities for personal expression, connection with others, or engagement in fun and enjoyment; ways of contributing to one’s community; or opportunities for personal growth. The guide also explores some of the challenges individuals with dementia face when they attempt to engage in leisure activities and how to overcome some of those challenges.

Helpful Resources The Living Well Workbook The Living Well Workbook is a guide for people living with Mild Cognitive Impairment (MCI) or early dementia. A collaboration between the Alzheimer’s Association Minnesota-North Dakota Chapter, HealthPartners Center for Dementia and Alzheimer’s Care, and the Center for Spirituality and Healing at the University of Minnesota, this guide presents brain wellness strategies and the evidence behind them. Each chapter includes information about a specific strategy, its benefits, personal experiences of people living with MCI and early dementia, practical action steps, and a place to build an individual “living well” plan. People with early memory loss can take charge of their own health and well- being. This guide offers an opportunity to explore lifestyle

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This sensitively written and insightful 20- page booklet can be meaningful to anyone involved in the dementia experience. It is available to download (FREE of charge) at: www.marep.uwaterloo.ca/products/ Scroll down to By Us For Us Guides to see all of the guides in the series. You can also inquire about the guides by calling: 1-519-888-4567.

person with dementia and read, create, and share stories inspired by hundreds of images and questions in the site’s library of prompts. Or they can work online with family members or friends across the country to write a story together.

Storytelling Program Improves Quality of Life By Anne Basting, PhD We read the bad news about dementia all the time: still no cure for Alzheimer’s; the cost of dementia care projected to explode as the Boomers age; the immense stress and burden of day-to-day caregiving. In contrast, the TimeSlips Creative Storytelling Project provided some rare good news for people with dementia and their families and caregivers when it launched a new, free, and interactive storytelling website, Timeslips.org at: http://www.timeslips.org

TimeSlips Storyteller and Facilitator share in the joy of imagination Families wrestling with dementia are commonly consumed with the daily challenges of managing care. The new website provides a creative and positive way to take time oﬀ from focusing on the disease, and instead spend time growing, learning, and even playing together. TimeSlips is a joyful experience that opens the power of storytelling to everyone by replacing the concern about memory with an opportunity to enjoy the power of imagination. Peer-reviewed research suggests that TimeSlips storytelling activities improve communication and increase the pleasure that people with

Using photos and word prompts to inspire participants’ creativity, TimeSlips provides a fun, low-pressure way for people with dementia to spark their imaginations, connect with one another and with caregivers and family members, and express themselves without worrying about embarrassing memory lapses or “wrong answers.” Visitors to the new site can sit with a

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dementia take in their daily lives. In nursing homes settings, it has led to increases in social engagement between staﬀ and residents.

(www.penelopeproject.wordpress.com) with Sojourn Theatre and Luther Manor.

Research Updates It is common to hear distinctions made between “traditional” medicine and “alternative or complementary” medicine. Some people express concern that scientists involved in more academic or traditional medical research may not be open-minded to “natural” supplements or other therapeutics. In fact, many “natural” substances have been, or are currently, under investigation for potential treatment of Mild Cognitive Impairment (MCI) or Alzheimer’s disease. Recently, coconut oil and cinnamon have been receiving greater attention for their potentially therapeutic beneﬁts

Visitors to the website can use Timeslips.org free and without training, although people who plan to use TimeSlips with groups of people with dementia in care settings are encouraged to get trained. The TimeSlips Creative Storytelling Project offers individual and organizational certification in the method. Timeslips.org and the companion online training have been endorsed by people with dementia and leaders in the fields of aging services, the arts, education and civic engagement. “The revelation and realization that, ‘I can't remember, but I can IMAGINE!’ blessed my mind, heart and soul. I hope I remember that until I can't remember!” said recently diagnosed Dave Sheehan, about the new online training.

Cinnamon Cinnamon is widely used by humans as a spice and as a traditional medicine. It is, perhaps, one of the world’s oldest herbal medicines, having been mentioned in the Bible and in Chinese texts as long as 4,000 years ago. A research team in Israel (headed by Michael Ovadia from Tel Aviv University), has isolated one of the ingredients in cinnamon, CEppt, and used it in a series of tests conducted on laboratory rodents with genetically-induced Alzheimer’s. The rodents received either the cinnamon extract or placebo for four months. The

For more information see: www.timeslips.org. TimeSlips founder and director Anne Basting is the Director of the UWM Center on Age & Community and Associate Professor of Theatre in the Peck School of the Arts. She is the author of Forget Memory: Creating Better Lives for People with Dementia (2009, Johns Hopkins University Press), and, writer and producer of The Penelope Project

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extract improved the rodents’ performance on learning and memory tasks. It also reduced the amount of amyloid plaque formed in the brain and delayed disease development. Further trials will need to be conducted in humans to evaluate both safety and efficacy. To gain the identified Alzheimer’s-related benefits described in this rodent study, a person would have to consume at least 10 grams of cinnamon every day - a toxic amount of cinnamon that is not recommended.

ran one study. The Madison Memory Study included 218 men and women ages 40 to 95 who were experiencing some memory loss and examined the effect of a 90-day supply of apoaequorin dietary supplement on cognitive functioning and other quality of life measures. Changes on specific assessments of cognitive function were measured at various time points during the study. The results of the study were promising, but the study did not include people with Alzheimer’s and the findings were not published in any peer-reviewed medical journal. At present there is no evidence that jellyfish can have any beneficial impact on treating Alzheimer’s.

Coconut Oil Coconut oil has medium chain fatty acids, which are a good source of energy or glucose. Glucose is the brain’s primary energy source and there is evidence that people with Alzheimer’s have reduced levels of glucose in their brains. However, Coconut Oil has not been shown to have any direct beneﬁcial impact on Alzheimer’s. The long and short chain omega-3 and 6 lipids are the most studied supplements for Alzheimer’s, with DHA receiving the most attention. At present, however, studies of DHA have not revealed any ability of this supplement to treat symptoms or slow progression of Alzheimer’s. There are ongoing studies looking at its eﬀects in the earliest stages of MCI, before dementia has set in.

We are thankful to Mike Raﬁi, MD, PhD for his contributions to these research updates.

Maintaining Hope and a Sense of Humor Hope and humor are not the first words that come to mind when you think of Alzheimer’s, but they are two of the most important ones. The ability to laugh and find promise in the future is an enduring gift to be reopened and savored over and over again. The Gift of Humor Many people with Alzheimer's and their loved ones discuss the benefits of finding humor in everyday life. Laughter can reduce stress. The act of laughing releases endorphins (a

Jellyﬁsh Jellyﬁsh protein is Apoaequorin. The main manufacturer is Quincy, and they

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naturally occurring brain chemical) that foster a sense of well-being and relaxation. These endorphins are also released during exercise. A good belly laugh is a form of gentle exercise as it engages your chest, abdominal, and facial muscles and temporarily increases both your heart rate and blood pressure. When the laughter subsides, your heart rate and blood pressure can actually drop lower than they were before you were laughing, resulting in a more peaceful feeling.

People with Alzheimer’s often share a robust sense of humor with one another. During a support group meeting one woman starts to say, “I think I may have already shared this story…” but is interrupted by another participant who says with a raucous laugh, “Hey, tell us again! Do you really think we’ve remembered whatever you might have told us?” Although humor can be therapeutic, support group members also advise their family members and others to be sensitive about its use. They suggest that humor is not helpful if it is making fun of someone in a hurtful manner; if it leaves someone feeling left out; or when it’s hard to understand. They caution that the use of humor could stiﬂe other more serious feelings that need to be expressed.

Laughter among family members and friends can brighten dark moments and promote more relaxed and encouraging feelings. Members of a support group for people with Alzheimer’s in the San Francisco Bay Area in California advise their family members: “Have a sense of humor! It helps us to lighten up about things we may have trouble with.” The ability to laugh at one’s circumstances can provide welcome relief. Al says, “Sometimes I feel like a big kid. Every day is a new day with new discoveries because I can’t remember anything I’ve already discovered! I laugh about it and that keeps me young at heart.”

Maintaining Hope You may wonder where to ﬁnd hope in the experience of Alzheimer’s, but it lives in more places than you might imagine. In his public address to the Alzheimer’s Association of South Australia, Philip Alderton says, “We may not be able to change the end result, but our journey there could well be determined by our actions and mental attitude. My feelings are that there is always hope. Wherever there is life, there is hope, however slender that may appear at times.”

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If you have limited family relationships, it can be comforting to establish a sense of extended community—even one or two signiﬁcant people who will see you through the ups and downs, and with whom you can share your hopes and your fears. True communication and understanding between people is a powerful ingredient in a recipe for hope.

Although any disability can be discouraging, it is important to stay involved in life – to maintain activity that will keep you stimulated and challenged. John states, “Keeping active, getting around, and doing things gives me hope because if I don’t keep doing things, I mope.” A positive attitude is also essential. Another man says, “Looking on the positive side of things gives me hope. The negative doesn’t do any good.”

Advances in science can also provide hope and participation in research can be an eﬀective way of contributing to the cause.

Thaddeus Raushi deﬁes prevailing beliefs about Alzheimer’s and oﬀers a powerful message of hope. He writes, “I’d like to suggest that there are Alzheimer’s survivors. For me, surviving is both attitude and action. It means that even while knowing that I have this disease, I can still go on with life always doing the best I can with what I have.”

Can Something Good Come From Alzheimer’s? Finding and acknowledging positive outcomes from challenging or unwanted situations can greatly improve quality of life for you and your loved ones. Perhaps something encouraging has happened in your relationships with others, in adjustments you have made in your daily routines, or in insights you have gained into yourself. E.L. Gorman writes, “Yes, having Alzheimer’s has changed my life; it has made me appreciate life more. I no longer take things for granted. I realize that time is precious and not to be wasted on negative emotions like anger, revenge, and hatred. I have learned the power of forgiveness.”

Hope is also nurtured through the encouragement you receive from others who understand your challenges. Participants in Alzheimer’s support groups frequently speak about the value of coaching one another along during the tough times. One participant says, “People coming together, and having everyone hoping together and thinking this way as a group helps a lot.” One woman speaks to another invaluable source of support, “I get hope from my grandkids and my family.”

Your life will continue to reveal many opportunities to experience the

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sustaining beneﬁts of both hope and humor. Keep an eye and ear out for the possibilities, and never miss out on a chance to laugh, give thanks, and feel the promise in each day.

focused on the "here and now," focusing on the present moment rather than being worried about the future, and having fewer regrets about the past. Prior to my health challenges, much of my life was taken up with striving for this or that and not really paying attention to the things I value most primary and secondary relationships, spirituality, and health.

Questions for Discussion Do you and your loved ones share a sense of humor? Is it helpful? Is it ever hurtful? What gives you a feeling of hope? Has anything good come out of Alzheimer’s for you or your loved ones?

For me, to live in the moment and to really appreciate the things and people I value most, I have embraced the spiritual practice of mindfulness and stillness. The ability to live in the present moment deepens, develops, and matures when there is an intention to pay attention. I have found that I am unable to pay attention to the present moment when I am preoccupied with the past or future. At this chapter in my life, in order for me to live life to the fullest, I need to take time out to ﬁnd solitude, meditate, and contemplate on a regular basis. Real life is hidden from awareness and consciousness if I do not.

This article is revised and condensed from “Maintaining Hope and A Sense of Humor” in Chapter 22 of Living Your Best with Early Stage Alzheimer’s by Lisa Snyder, 2010, Sunrise River Press. http://www.amazon.com/Living-YourBestEarly-Stage-Alzheimers/dp/1934716030

Volume 17, Number 2: Winter, 2012 Here and Now By Lou Bordisso Following my dementia diagnosis several months ago, I came to realize that I have no idea how long my memory and cognitive functions will serve me. There is more of a sense of urgency so I am "seizing the moment" and enjoying life to the fullest, as I am able. In many ways, I am happier now than I ever have been in that I am

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sort of physical exercise) can also nurture stillness and contemplation, as it is a deliberate exercise to strengthen body, mind, and spirit. Finally, I have found that some form of a communal experience helps to kindle my spirits in that I am able to get support and encouragement with others who share similar values. Some people ﬁnd that dementia support groups work, others ﬁnd solitude in 12-step recovery meetings of some sort, while others have returned to their spiritual roots in a given religious tradition. Each of us is unique and is gifted with our own temperaments and spiritual styles.

Lou Bordisso with monks in Thailand There are several ways I have discovered to be helpful in cultivating stillness and mindfulness. When I had a 40-hour work week, it was diﬃcult to “ﬁt in” the time for stillness. Now that I have been gifted with time and more appreciation of the things that I value most, I am more able to practice my spiritual disciplines by having a more balanced lifestyle.

Many years ago, I had an opportunity to visit spiritual traditions other than my own. When I was employed by the Navy as a civilian employee assistance program administrator and counseling psychologist, I frequently traveled to Asia to meet ships at various ports of call. I had many opportunities to learn about and appreciate diﬀerent faiths. While en route, I stayed a few days in Thailand and took the Buddhist Temple tour. Later in life, I also had the great joy of visiting Kyoto, the Buddhist center of Japan. While there, I journeyed to a Buddhist monastery to experience the famous meditation rock garden. I found the rock garden to be fascinating but I gained the most spiritual insight as I departed. There was a very small sign that said, “The Usual Path” (in order

I strive to take time each day for spiritual reading from the religious tradition I am most comfortable with and reflect on the wisdom of my spiritual tradition. Each day, time has been set aside for some sortof prayer, meditation, and contemplation. I have discovered that morning is best for me in that my mind is fresh. Others might find that different times of the day for their spiritual practices can be more helpful. Daily walking (or some

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to direct tourists back to our destination). The sign did not say, “The Right Path” or “The Only Path”, it simply said “The Usual Path.”

Research Updates Resveratrol Clinical Trial Many people are interested in “natural” treatments for Alzheimer’s. Some will spend a great deal of money on supplements that claim to treat the disease, even when research does not support the claims. Thus it is important to test any potential beneﬁt of a natural supplement through well-designed clinical trials.

There is no right way or one way to cultivate stillness or live in the present moment. Each of us living with dementia or related memory challenges is invited to discover our own path as we journey through this chapter in our lives. I have found that my diagnosis has turned out to be a gift in that I am more content now than I have ever been. Maybe it is because of my diagnosis and not in spite of my diagnosis that I have rediscovered and re- kindled my spiritual roots and have come to appreciate what I have here and now.

Resveratrol comes from plants and is found in the skin of red grapes and in red wine. Some research has suggested that limited consumption of red wine may lower the risk of developing Alzheimer’s, and researchers hope that beneﬁcial compounds in resveratrol may also help to treat persons who have the disease.

Lou Bordisso has Masters degrees in Divinity and in Marriage and Family Counseling, and a Doctorate in Counseling and Educational Psychology. He is a former priest within the Old Catholic faith tradition and was a hospice spiritual care chaplain. He is currently a member of the ecumenical Order of St. John Vianney. Bordisso provides pastoral counseling and spiritual care for clergy and lay persons. He is currently program host for the public broadcast, Political Inquisitions, which addresses ethics, morality, spirituality, and politics. He also serves as an early-stage advisor for the National Alzheimer's Association and is active in his local Alzheimer's Association Chapter.

This double-blind placebo-controlled study is coordinated by the federally funded Alzheimer’s Disease Cooperative Study (ADCS). The 12-month study will enroll 120 participants with mild-to-moderate Alzheimer’s from 26 sites across the United States. Participants must consent to blood draws, magnetic resonance imaging (MRI), and lumbar puncture (LP). Enrollment will likely open in April, 2012.

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Tau Protein in the News

The Buzz About Bexarotene

Alzheimer’s disease is characterized by abnormal protein deposits in the brain. Beta-amyloid forms sticky “plaques” outside the brain’s nerve cells and tau protein forms “tangles” inside nerve cells. Both of these processes contribute to cell destruction and progressively damage brain function. Much research has focused on reducing beta-amyloid plaque, but less research has been done with tau and its role in disease progression.

Researchers at Case Western Reserve recently reported on the ability of a cancer drug, bexarotene, to dramatically reduce beta-amyloid and improve functioning in Alzheimer mice. Since the drug is already approved to treat a rare form of cancer, some may be tempted to try to obtain it for treatment of Alzheimer’s. Much caution is warranted, however, because mouse models don’t fully replicate humans, and treatments that have work in mice have not always worked in humans. Bexarotene also has known side effects and has rarely been used in the elderly. Although someone could manage to obtain this expensive drug on his or her own, issues such as what dose to take, and how often to take it, and what side effects to look out for are not well understood. Results could be more harmful than beneficial. The findings from this study are novel and very interesting to researchers, however, and human clinical trials will likely begin soon. Stayed tuned!

It has been known for many years that tau tangles begin in the region of the brain where memories are ﬁrst made and then they eventually spread throughout the brain. But how this spread occurs has not been clear. Researchers at both Columbia and Harvard Universities now have data that suggests tau tangles spread by jumping from nerve cell to nerve cell across synapses, the connections between cells that allow their communication. Many researchers across the country have been quick to clarify that this spread of tau does not suggest that Alzheimer’s spreads like an infection or is contagious. The ﬁnding, does, however, open up exciting possibilities for research into new treatments that could ultimately block tau transmission and prevent disease progression.

Staying in Touch and on Track Many people with Alzheimer’s or a related disorder are at risk of becoming lost while out in their communities or while traveling. Yet most also discuss the importance of being able to maintain their independence. You may value being able to go out and about alone, but you or your family members may also worry about your risk of

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disorientation or an episode of confusion that could threaten your safety.

maintain some freedom and independence while also maximizing safety. In the event that you become lost or disoriented while out and about, there are a variety of devices that can help locate you so that you can readily receive help if needed. A few options are: Tracking Shoes

The National Alzheimer’s Association estimates that up to 60% of people with dementia will become lost or disoriented as a result of memory loss, confusion, or disorientation. This may occur when walking or when driving. In October, 2008, the state of Florida established the “Silver Alert” program to help law enforcement ﬁnd missing seniors with dementia, including persons lost while driving. Meredeth Howe, PhD, RN and researchers at the College of Nursing at University of Florida reviewed data from 154 missing persons reported to the program. They found that more than 60% of drivers with dementia who were reported to the Silver Alert program went missing while on routine or familiar outings to local destinations. This is important to note because many persons with dementia think it is safe to drive as long as they stay close to home or in familiar places.

Global Tex Exploration (GTX) Corp and Aetrex recently patented a GPS shoe for people with memory loss that comes in a variety of styles and allows the wearer to be located through GPS technology embedded in the shoe. An overview of the shoes is on the company website at: http://www.gpsshoe.com/ Cell phone Technology Some cell phones come with GPS technology that enables the phone to be found if it is missing. If you carry the cell phone and you become lost, you can then be located and found through tracking the phone’s location. See an explanation and review of these cell phone systems at: http://electronics.howstuﬀworks.com/ gps-phone.htm

There is a growing interest in the use of global positioning systems (GPS) tracking systems to help people with memory loss maintain their independence while also maximizing their safety. Although the idea of being “tracked” may not appeal to everyone, in fact, using current tracking technology with trusted family members or friends can help you to

Personal tracking devices There are many devices on the market that can be used to keep track of your location. An internet search of “personal tracking devices” reveals many choices. The Alzheimer’s Association provides a web-based

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location management service called “Comfort Zone” so families can track the whereabouts of a loved one. You wear or carry a locator device or have one mounted on your car, and family members can access information about your whereabouts by using the internet or calling a monitoring center. http://www.alz.org/comfortzone/inde x.asp

who were involved in development of the booklet. Getting Equipped to Tackle Forgetfulness is available to download at the Foundation for Assistive Technology homepage at: http://www.fastuk.org/home.php Latest Alzheimer’s Research Progress Report Released

Helpful Resources Getting Equipped to Tackle Forgetfulness

The latest annual Alzheimer’s disease research report from the National Institutes of Health (NIH), is now available to read or download online. 2010 Alzheimer’s Disease Progress Report: A Deeper Understanding highlights important developments and directions in NIH-funded research. The comprehensive booklet is prepared by the National Institute on Aging, which leads the NIH eﬀort conducting and supporting research on Alzheimer’s and related disorders, including Mild Cognitive Impairment (MCI). Contents include:

The Foundation for Assistive Technology; Innovations in Dementia; and Trent Dementia Services Development Centre are all innovative non-proﬁt organizations in Great Britain that have collaborated on a free publication to introduce the role technology can play in helping people with early-stage dementia live more independently and enjoy better quality of life. The booklet aims to help readers understand how novel equipment and technology can support both the independence and safety of a person with dementia while also providing assistance or relief to care partners.

• risk for developing Alzheimer’s • an overview of Alzheimer’s

The guide discusses the role technology can play in daily activities such as ﬁnding things, maintaining safety, managing medication and staying connected to others. Content is based on experiences and testimonies of people with dementia and their care partners

• genes that play a role in the disease • neuroimaging and biomarkers that detect and track the disease • research into new treatments

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• lifestyle factors that may worsen or protect against the disease • help for caregivers Special features include animation showing the progression of Alzheimer’s in the brain and video interviews highlighting new insights into the disease. The publication is available in electronic format only.

Innovative Programs Using Photography and Film SEPIA Seniors Exploring Photography, Identity, and Appreciation SEPIA aims to open creative avenues for seniors with and without dementia and can be modified for the varied needs and abilities of participants. The initiative offers a variety of ways to engage in photography and can be adapted to persons with varied levels of cognitive and functional ability. The program offers the following:

The SEPIA Initiative at the Museum of Photographic Arts in SanDiego, California is a series of exciting and engaging opportunities offered for senior citizens including persons with Alzheimer’s or a related dementia. The initiative encourages seniors to be engaged with both art (specifically photography) and their community by promoting art-based discussions and opportunities to create photographic images. Program Coordinator, Cara Goger states, “With the turning of every year the ways in which our eyes see the world changes. Experience and wisdom clarifies our perspective and allows for unique artistic expressions.”

•Museum tours conducted by specially trained docents to engage visitors with dementia in discussion, art appreciation, and creative imagination about the photographic images on display •A simple and fun four-session digital photography course designed to introduce participants to digital cameras and creative photo taking

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•Outreach to Alzheimer’s residential care homes or adult day programs whereby SEPIA staﬀ bring photographs from the museum collection to generate discussion and to inspire art appreciation and engagement

Foundation and the James Irvine Foundation. Telling our Stories: Using Film to Hear the Voices of People with Dementia Innovations in Dementia is community interest company (not for proﬁt) based in the United Kingdom. They work with organizations and communities to make sure that people with dementia can stay engaged in their communities and lead meaningful lives. They are also involved in a variety of collaborative and creative community-based partnerships and endeavors to help empower people with dementia and improve their quality of life.

Coger has coordinated one community-based exhibit of photographs taken from seniors without dementia in the SEPIA program. The images touch on themes of identity and self-expression reﬂecting meaningful experiences and places in the artists’ lives, from capturing images of a local community garden to visually conceptualizing the feelings of rebirth after major surgery. “It was a rewarding experience for me to watch these artists share their beautiful work with their family and friends. I am looking forward to showcasing more SEPIA work in the future,” Goger states. She hopes to expand this coming year to proﬁle the works of persons with dementia, as well. “People with Alzheimer’s are often very creative,” she states. “They can be spontaneous and less self-conscious in our discussions and in their creativity and that makes them really rewarding participants to work with.”

Innovations in Dementia has undertaken two video-making projects to explore the varied messages of people with dementia. One project focuses on individual stories. The project directors note that the film contents are not solely about the experience of dementia. “They are about people living their lives positively, with vitality and creativity. They are about people who are still learning, and still growing. They show that dementia is life-changing, but not life-ending.” Film provides a rich opportunity to share stories and reflections and also serves to challenge negative stereotypes or stigma associated with dementia. Despite memory loss and other symptoms that can affect

All programs, staﬃng, cameras, and other materials for the SEPIA Initiative are provided free of cost to the program participants. Funding for the initiative is generously provided by the Metlife

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communication, many people with dementia have a story to tell or something that they want to say. Additionally, some people with dementia who engage in public speaking have shared that they can often be unsure on a day-to-day basis how they will feel; they can become very worried about their ability to perform on any given day. “By using ﬁlm,” states one of the program directors, “we can enable a wider range of people with dementia to have a say, in comfort, and in their own time, and in a form that allows their voice to be heard forever.”

October 2011, the project collaborators created an informative instructional booklet on involving people with dementia in film. The project and the booklet aim to encourage other organizations and groups to create their own films with people with dementia to ensure that their voices are heard. The booklet covers helpful information including: • Ways you can use film with people with dementia • How to get started • How to involve people with dementia in the filmmaking process • Obtaining consent to be filmed • Choosing the participants to work with • Equipment and technical advice

Innovations in Dementia, Age Concern Woodley, and Be Inspired Films collaborated on a second project (funded by Big Lottery) that focused on the filming of a group of young-onset dementia participants at Age Concern Woodley, a club for people with dementia under age 65. The film called “My Life, My Dementia, My Club” can be seen at: http://www.myid.org.uk/films

Volume 17, Number 3: Spring, 2012 How Alzheimer’s Has Changed My Life By Robin Leckie This morning, I awoke with relief. I had only crashed from my bed to the ﬂoor, not been catapulted over a cliﬀ toward my certain death, as my nightmare had

Based on their experiences of ﬁlming a two-day workshop at the club in

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promised. My medicated mind was playing tricks again. It seems like just a few days, not three years, since I called to my wife asking her to sit beside me while I shared some news. The winter sun was ﬁlling the room with warmth, and rainbow colours streamed through the stained-glass window. I had just returned from a doctor's appointment and now, what I had expected for some time, was diagnosed – I had Alzheimer's. Earlier, as I returned home that morning, I remember feeling somehow relieved, even though this was what I had anticipated. All those isolated moments of memory loss, confusion, and indecision now had a reason – in the same way as when we have a complaint and make a doctor's appointment and part of us hopes the complaint will still be there when we arrive. I was the same person before the appointment as after; I still looked the same. But now I knew I was faced with an uncertain future.

I had had a successful and very enjoyable career as an actuary. I chose early retirement more than 20 years ago, prompted by my concern even then, over my occasional lapses of memory. I knew I had not been performing at the high level I had set for myself. I gave up playing bridge because of my inability to remember the cards being played. Increasingly, I was forgetting familiar names. I recalled an appointment some years ago when I had actually passed the verbal Alzheimer's test given to me at my request. Later, I again passed, but because of my history and concerns, the doctor in her wisdom recommended an MRI brain scan. Alzheimer's was then conﬁrmed.

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The good part was that now I could do something to slow the process. Instead of phoning my four children with the news of my diagnosis, I decided to write to each of them to let it sink in when they were alone. Alzheimer's can be hereditary, and I hoped they wouldn't worry for themselves, as well as for me. I thought of President Reagan and his letter to the nation, and his eventual downfall into oblivion. But for whatever reason, I was not worried.

days alongside the lake and through our country-like parks. I am able to contribute in our book club although I must write down a list of the characters as I read. I can still occasionally beat my wife at Scrabble. Even the healthiest amongst us, every day, dies a little with some loss or pain, but every day we can grow a little too. I read a recent obituary of someone who died at 95 and he wanted his tombstone to read “Still curious.” Sometimes when we are going through hard times, we say, “there's a light at the end of the tunnel.” With dementia I know there is no light. But in many ways my life is growing richer. I notice the colours and textures around me as I walk. I am no longer in a hurry to accomplish things. I have time to delight in my family.

We have also told our friends from the beginning. Most people who meet me are surprised to learn of my dementia. For some, Alzheimer's progresses very rapidly. For others, like myself, the progress has been slow moving – possibly because of early detection and thus, early treatment, for which I am appreciative. I celebrated my 80th birthday last year and still have plans for the future. Alzheimer's is not a death sentence. I never would have chosen it, but now that it has chosen me, I am concerned, but not fearful. We all live ﬁnite lives – I am now on a diﬀerent kind of journey.

I see my life as a movie, in slow motion where the camera lingers on what is important and often a bright light illuminates a scene. In the amazing mystery of how our brains work, I may not remember what I had for lunch yesterday, but all my early adventures are still within me. I have written many little stories from my life for my grandchildren.

I no longer socialize much, preferring quiet times on my own, and since I now prefer familiar sights, I am thankful my work took me to many distant parts of our world. I begin my day with the Ken-Ken and Sudoku from my daily paper. I read every page of The Economist. I walk for an hour most

When my wife took over the driving two years ago, I was at ﬁrst a constant backseat driver. I have to admit she probably thinks I still am, but I can't believe how pleasant it is to be a

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passenger, gazing at the people and sights as we travel on outings and to our endless appointments.

Here are some of the replies: “I try to think of something positive so I don’t descend into negativity.” “I go to the refrigerator!” “I take my mind to something I can do to take my focus oﬀ of what I can’t do.”

Alzheimer's is a process, a constant companion, a conjoined twin. While medication has helped, I know of no diet or drugs or surgery that will suddenly cure me. I tire easily but I accept this; I am growing physically old, too. I become easily confused, am often dizzy, and increasingly have nightmares, but feel lucky to be in no pain. I know I am just one of many who carry some burden. One of my sons has juvenile diabetes, with no known cure as yet. And you just have to watch the evening news, and the ads for health products between the news, to realize there are many suﬀering in our midst.

“I step away from whatever is bringing up the frustration and go back to it later.” “I just recognize that I can’t do some of the things I used to do. I have to hire some help now. I don’t want to give up these things, but you have to allow someone else to do it. Then you don’t get frustrated.” “I slow down – everything just takes longer and I have to concentrate more.”

I sometimes think this is my sunset time. The bright light of day is passing and darkness lies ahead. I do not know what the dawn will bring. But right now, in this moment, I am thankful my life is full.

“When I get frustrated, sometimes I swear (but quietly).” “I do small steps. Instead of doing the complete list I may have done before, I just pick up a few of the most important things to do and focus on them.”

Robin Leckie lives in Toronto, Ontario. We are grateful for his permission to reprint his article which originally appeared in The Globe and Mail, April 4th, 2012.

“I’ve learned to let the frustration go. I take a long walk and that relieves the tension. I’m not thinking about anything except ﬁnding my way home!”

BRAINSTORMING “I beat myself up too much and that makes the frustration worse.”

We asked people with Alzheimer’s: What do you do to manage the frustrations of having memory loss?

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“Memory loss is not our fault. It’s Alzheimer’s fault. Take some deep breaths so you don’t blame yourself.”

its tracks. In the ﬁeld of Mild Cognitive Impairment (MCI), Alzheimer’s, and related disorders, we are actively testing drugs that are thought to be disease modifying, through clinical trials in the hopes that they will slow down or arrest the progression of the disease. We will certainly keep readers informed of any advances in these clinical trials.

Questions and Answers Q. “When my doctor diagnosed me with Alzheimer’s, he prescribed Aricept. What does Aricept do?”

Our thanks to Michael Raﬁi, MD, PhD for providing the response to this question.

A. The medications currently approved for Alzheimer’s disease (AD) - including Aricept, Exelon, Razadyne, and Namenda - are symptom modifying drugs. That is, they reduce the symptoms associated with AD, such as forgetfulness, confusion, and difficulty performing activities. These medications do not, however, affect the course, rate of progression of AD, or the underlying cause. Examples of symptomatic treatments include cold remedies. If a person suffers from the common cold, and its associated symptoms such as sneezing, coughing, runny nose, and sore throat, physicians will often prescribe medications to reduce these symptoms. The patient still has the cold, and the cold will run its course. The body’s immune system usually clears the virus, and the patient recovers.

Research Update Detecting Amyloid in the Brain The presence of beta-amyloid plaque in the brain is a hallmark of Alzheimer’s disease (AD). Until recently, however, amyloid protein could only be seen and studied through autopsy of the brain after death. Being able to confirm the presence of amyloid in the brain during life could allow for a more accurate diagnosis of AD. In April, 2012, the FDA approved Amyvid, also known as florbetapir. Amyvid is a chemical tracer that allows visualization of beta-amyloid plaques in the brain during life by using a PET scan (positron emission tomography). A positive PET scan using Amyvid indicates that moderate amounts of amyloid plaque are present in the brain and suggests a diagnosis of AD, but is not definitive. It is important to note that a person can have some amount of amyloid plaque in the brain but not

In contrast to a symptom-modifying drug, a disease-modifying drug aﬀects the course of the disease and makes its duration less, or even stops its progression. Antibiotics are a good example of disease modifying medications. They stop an infection in

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have any symptoms of Alzheimer’s and may never develop the disease. However, a positive Amyvid scan in conjunction with a neurological examination, medical history and physical exam, and some degree of neuropsychological testing may help conﬁrm the diagnosis.

homes or day-to-day activities can be modified to support greater safety and independence. The Hartford is a comprehensive financial services group that offers a variety of excellent publications free of charge. Simple Solutions – Practical Ideas and Products to Enhance Independent Living includes descriptions of over 200 products and ideas that can enhance independence, safety, and comfort for seniors in their homes, including those living with dementia. Contents include:

A negative Amyvid scan would indicate that there are no or very few amyloid plaques present and reduces the likelihood of an Alzheimer’s diagnosis. Any existing symptoms could therefore be due to another cause of dementia.

•Vision Solutions Although PET scan using Amyvid is now FDA approved, Medicare and other health insurance do not yet cover the procedure. Nonetheless, the Amyvid tracer for PET scan is eventually expected to be used in the evaluation and diagnosis of AD. It may also be used in clinical trials to measure eﬃcacy of medications aimed at removing amyloid plaque from the brain.

•Hearing Solutions •Mobility and Balance Solutions •Strength, Dexterity, and Reach •Memory Solutions •Fire and Burn Safety Solutions The 52-page booklet also includes a supplier guide that references where each suggested item can be purchased, as well as a home checklist to enable the reader to assess the safety and convenience of his or her own home.

Helpful Resources Simple Solutions: Practical Ideas and Products to Enhance Independent Living Many people hope that as they age or develop dementia, they will be able to stay in their own home as long as possible. With the advent of more technology and some innovative planning, there are many ways in which

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Modern Ideas, Modern Living:

about their diagnosis. Memory loss or other symptoms may make some interactions or communication with others a bit more challenging at times, and it can be tiresome or awkward to have to explain oneself. Although some people are very open about their diagnosis, others are less comfortable verbally sharing this information.

Taking the Next Step in Home Design and Planning for the Lifestyle You Want Some individuals or couples living with dementia face decisions about whether to move to be closer to family or services; whether to downsize or settle into a retirement community; or whether design modiﬁcations to an existing home can make it more livable and accommodating to both physical and cognitive aging.

Recently, in a support group for people with early-stage memory loss, a participant shared with her peers a laminated business card with a message on it (as noted below) that she carries to hand to others, as needed. Although she is not often out alone, she states, “I use it when I travel sometimes because I’m slow to respond or I may do something weird and the card really helps people be more understanding. It’s amazing how many times I hand the card to people.

Modern Ideas, Modern Living is a 32- page guide that provides helpful steps and questions, as well as priorities to consider when making these important decisions. It includes a number of “universal design” principles and checklists for homes that make them safer and more livable.

A Diﬀerent Kind of Business Card

Thank you for your patience. I have a memory impairment and may require a few extra moments. Your understanding is appreciated. Others in her support group took interest in the card and a generous care partner of one of the participants had a quantity of the cards printed for other group members to use. “I use it as an introduction,” says one man. “The card gives my condition a reality and I don’t

Many people with Mild Cognitive Impairment, Alzheimer’s, or a related disorder discuss the challenges of deciding how and when to tell others

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have to keep telling people or explaining myself.” Another support group peer ﬁnds a very personal use for the card and says, “I use it to remind myself that I’m not stupid – that I have a medical condition that aﬀects my memory.”

If you are interested in obtaining this kind of card, contact your local Alzheimer’s organization to see if they have cards and if they do not, perhaps they will be inspired to create them!

The use of such a card can also help to raise awareness. One man tells the following story: “I walk the neighborhood a lot and sometimes someone will say ‘hi’ and then say, ‘you forgot my name didn’t you!’ Then I show them the card and they treat me diﬀerently and have better understanding. Now my neighbor says ‘hi’ to me and includes her name with her greeting, so that’s a big help.” Not everyone will be comfortable carrying or using such a card. Some prefer to keep their memory loss private, while others would rather just tell someone they have memory loss rather than hand out a card. The card can, however, provide a more discreet way to share this information. Some care partners have reported that a variation on this kind of card can be helpful in settings such as restaurants with waiters, or in airport security lines. Variations for caregivers may read something like: “Please be patient. My companion has a memory impairment and may require a few extra moments. We appreciate your understanding.”

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Another option is to have cards created, printed, and laminated (for improved durability) at a local oﬃce supply or printing store.

enduring value of a sense of humor, the chorus named themselves “The Unforgettables.” They rehearsed weekly for three months for a concert on September 1, 2011 that was attended by family members, friends, and members of the community.

The Unforgettables A Chorus for People with Dementia and Their Family Members By Mary Mittelman, DrPH The results of the few research studies done to date suggest that sharing a pleasurable arts-based experience can enhance the relationship between people with dementia and their family members, while also contributing to their quality of life. We recently started a chorus for people with dementia living at home and their family members, and are exploring the eﬀects of shared participation in an enjoyable social and creative activity.

Members of The Unforgettables chorus Program evaluations were conducted by social workers at the New York University Comprehensive Center on Brain Aging. The results were very encouraging. The improvements in mood were evident to the onlooker, but results of focus groups made it clear that participants valued the experience, both because of the singing and the social support. Even with the small number of participants in this initial study, the evaluations revealed improvement in quality of life for both the people with dementia and their family members. No one dropped out and the original chorus is continuing to rehearse weekly. They gave a second concert in December of 2011 and a third concert on May 3, 2012. Each practice and recital has provided a sense of community and renewed strength in the face of illness.

Beginning in June, 2011, we conducted our first small study to develop specific strategies to maximize the enjoyment of participants and determine essential details, such as the most appropriate choral arrangements, duration of rehearsals and amount of time for socializing. We identified a venue in New York City and two choral conductors. We enrolled 11 people in the early-to-middle stages of dementia, each of whom participated with a family member or close friend (a total of 22 participants). In a tribute to the

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The pleasure this process has given participants was clear from the start. The chorus has proven to be a wonderful place to be, where no one feels stigmatized.

Finding Meaning in Movement Recent research presented this summer in Vancouver, Canada, at the International Conference on Alzheimer’s Disease reinforced the importance and benefit of exercise for persons with both Mild Cognitive Impairment (MCI) and Alzheimer’s disease. Although we have reported on the benefits of exercise in past issues of Perspectives, this important topic deserves repeat attention. So don’t turn the page yet! Even if you are not a fan of exercise, or are not mobile, it’s possible to find a form of movement that can be meaningful and rewarding for both your mind and body.

The community chorus is designed to ensure a high quality as well as a rewarding experience for the singers, while also enriching and educating the wider community through the concert. The chorus provides much needed visibility to the enormous potential of the arts to enhance the well-being of people with dementia and their family caregivers. Patterned after The Unforgettables, the Alzheimer’s Association of Northeastern New York has recently established The Joytones in the 17-county region it serves. The program has enrolled 15 participants thus far who rehearse weekly. There are no auditions. The Joytones is open to individuals at any level of singing ability.

Physical, Emotional, and Cognitive (Thinking) Benefits of Exercise Regular exercise helps to maintain a healthy heart, control weight, and preserve muscle strength. Exercise can also provide the additional benefits of improving blood flow to your brain, elevating your mood, releasing tension, and maintaining your flexibility and mobility. Some find that physical exercise takes their mind off of memory problems and provides a welcome, refreshing activity. Research also suggests that people with MCI or early-stage Alzheimer's may be able to preserve their brain function and strengthen their thinking abilities for a longer period of time by exercising regularly. Many people do report that

Volume 17, Number 4: Summer, 2012 Exercise is Still Good for You

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they think more clearly and feel more mentally alert after exercise. Exercise can also help to improve mood and ward oﬀ depression or irritability by releasing endorphins in the brain that contribute to a feeling of well being. Those who exercise often report feeling brighter and in a better mood afterwards. Enjoyable social activity can also reduce stress and exercising with others gives the added beneﬁt of social stimulation.

What Type and Amount of Exercise is Best? There are many forms of exercise and you can find the one best suited to you. Walking and swimming are two of the safest and most popular methods, but exercise can also be incorporated into sports such as bowling, golfing, or tennis. Some get their exercise through enjoyable hobbies such as dancing or working in the yard. Check with your local senior center or gym for exercise classes. You may enjoy working with a trainer experienced in senior fitness who can help guide you through a stretching or weight training routine. Weight training can help to maintain both muscle tone and bone density. A growing number of people are also discovering the benefits of yoga or the Chinese practices of tai-chi or qigong. These forms of focused exercise can help with strength, balance, and flexibility and can be adapted to people of all ages and physical abilities.

Some people with Alzheimer’s or a related disorder become more sedentary, which can result in decreased muscle strength, bone density loss, and reduced ﬂexibility. Maintaining strong muscles, balance, and coordination may help you function independently for a longer period of time and reduce your risk of injury from falls, sprains, or other accidents.

If You Are Physically Disabled Exercise can be a rewarding and meaningful part of maintaining overall well-being for people with physical disabilities. If you have difficulty with movement or require a wheelchair, you may be able to benefit from exercise programs in your community specifically designed for people with physical disabilities. Check with your local senior center, community college,

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or university for classes. Organizations devoted to Parkinson’s disease can also be helpful resources for adaptive exercise programs. An exercise routine can be modiﬁed to respect your limitations while capitalizing on your existing strengths. You can also consult with your physician about the possible beneﬁts of physical or occupational therapists who can work with you on exercises that can maximize your abilities, provide enjoyable activity, and help to reduce risk of injury.

walking stick or hiking poles available in sporting goods stores to assist with balance. Getting Motivated If you do not enjoy the thought or practice or exercise just try to gradually increase your daily physical activity. Consider the following simple opportunities for increasing your movement: • Walk up a ﬂight of stairs instead of taking an elevator.

Pay Attention to Safety Some people exercise to improve their well-being only to end up injuring themselves in the process. It is important to tailor a program to meet your own speciﬁc needs, health condition, and body type. If you have a long history of exercise, you may be accustomed to a routine that works for you. If you are new to exercise, or starting a diﬀerent type of activity, consult with your physician before beginning your routine.

• Sweep your yard with a broom instead of an electric blower.

Any exercise should begin gradually and include gentle stretching before and after your exercise period so your muscles have a chance to warm up and cool down. Exercise in well-lit places, ideally with even surfaces. If you walk or jog, stick to routes with familiar terrain so you can avoid broken sidewalks or unexpected curbs. Walkers or hikers can also beneﬁt from using a

• Dance in your living room to your favorite music.

• Push your grandchild in a swing. • Throw a ball for your dog. • Get up from your chair to get a cookie instead of placing the bag next to you. • Dust the objects in your long-overlooked curio cabinet.

• Slowly pedal a stationary bike while you watch television. • When you walk out to get your mail at the mailbox, take a few more minutes to walk up the street and back.

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Any movement is better than none. It does not have to be strenuous to be beneﬁcial. But if you can gently get your body in motion a bit more throughout the day and periodically increase your heart rate, you may feel better and be motivated to increase your activity level. For some people, picking a set time for exercise each day helps to develop a regular routine.

Exercise & Physical Activity at: http://www.nia.nih.gov/exercise You can also call 1-800-222-2225. Learn more about the National Institute on Aging's exercise and physical activity campaign by visiting Go4Life at: http://go4life.nia.nih.gov/ Go4Life was designed to help adults 50 and older incorporate more exercise and physical activity into their daily lives. On the website you can watch exercise videos, submit your own exercise success stories, print educational tip sheets, and use the interactive tools in the MyGo4Life section to make an exercise plan and track your progress.

Finally, remind yourself of the benefits of movement and exercise. Exercise can help to maintain or strengthen existing physical abilities while also having a positive impact in many other areas that affect your quality of life. If you follow sound safety precautions, exercise may be one of the more effective treatments for managing Alzheimer’s or related disorders.

Plan For the Future But Live in the “Now” By Charles G. Warner

Helpful Resources The National Institutes on Aging has recently released an free updated 120page guide that describes the beneﬁts of exercise and physical activity for older people. The booklet discusses how to set exercise goals and how to incorporate exercise and movement into daily life. Sample exercises focus on endurance, strength, balance, and ﬂexibility. The booklet also addresses healthy eating and how to stay motivated. Read, download, or order a free copy of

I was diagnosed with Alzheimer’s in December of 2011. My physician was

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quite to the point; he told me the diagnosis and said “no more practicing law and no more driving.” Although somewhat taken aback, and I confess a bit in denial, I appreciated his being direct and followed his advice. I closed my law practice and began a new and diﬀerent life.

Preparation of the necessary documents does require using an attorney. You need an attorney who has expertise in the preparation of the documents necessary to carry out your wishes as to the disposition of your personal and real property. These types of attorneys usually hold themselves out as ones doing estate planning, estates and trusts, and/or wills and trusts, or descriptions similar to these.

I knew I needed to plan for the ﬁnancial future and to come to terms with having Alzheimer’s. I will explain how to address the ﬁnancial (estate planning) issues. I am still working on dealing with the disease, so that will be a progress report.

The second step: Find a good attorney. How do you ﬁnd an estate planning attorney and how do you know whether he or she is good? There are at least three free rating services available on the Internet.

Estate Planning Review the website: www.martindale.com. Martindale Hubble is the oldest nationwide rating service for lawyers. Find lawyers in your geographical area in “estate planning.” You can review their various qualiﬁcations if they are listed. The ratings listings are “av”; “bv”; and “cv”. The ratings, as explained by Martindale Hubbell, are below:

My ﬁrst piece of advice: Plan ahead. Do your estate-planning plan now: Estate planning is, among other things, the preparation of wills, trusts, advanced health care directives, and generally what you wish to have happen with all of your assets and possessions upon your incapacity and/or death. This is obvious, of course, but planning your estate is part of acknowledging the disease and its progression. As a person with Alzheimer’s you want to do this now while you have the capacity to make your wishes known and memorialized in legal documents.

AV Preeminent (4.5-5.0) AV Preeminent is a signiﬁcant rating accomplishment and a testament to the fact that a lawyer's peers rank him or her at the highest level of professional excellence.

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BV Distinguished (3.0-4.4)

staﬀ. You can access it on the Internet at www.SuperLawyers.com.

BV Distinguished is an excellent rating for a lawyer with some experience. A widely respected mark of achievement, it diﬀerentiates a lawyer from his or her competition.

Some may ask: “Do I really need a lawyer?” The answer is “Yes”. Estate planning is too complex and involves very sophisticated legal and ﬁnancial planning. The estate plan then has to be put in legal documents that will be acceptable to a court if there is an objection (sometimes called a “contest”) or questions by heirs. Even being a lawyer, but not an estate planning lawyer, I would not have attempted it myself.

Rated (1.0-2.9) The Peer Review Rated designation demonstrates that the lawyer has met the very high criteria of General Ethical Standing. Another newer national rating service, also accessible on the Internet, is Avvo. It can be accessed at www.Avvo.com. On Avvo.com look for “lawyers”, then ﬁnd the state, county, and city most convenient for you. Finally look for the lawyers in estate planning. “Superb” is the highest rating. They also post any discipline imposed on any lawyer by the applicable state bar association.

Before you go to your chosen lawyer, discuss with your spouse what your wishes are as to the disposition of your estate. What assets do you have? What are they worth? What disposition do you wish to make with regard to those assets, when and to whom? Take all of this information in written form with you when you go to the lawyer of your choice. Remember, this is not an adversarial process. The lawyer is there to carry out your wishes in legal documents.

Last but not least, there is a supplement to San Francisco Magazine published in the Spring of each year entitled “Super Lawyers.” “Super Lawyers” is also published in most other states in different periodicals. The names of those publications will be on their website. This lists the top five percent of attorneys in their fields of practice by county. The ratings are based upon peer evaluations by other lawyers as well as research by the Super Lawyers

A Realization: Living in the “Now” More important, and probably more diﬃcult, is living life with Alzheimer’s. I have no magical answers. I can share the philosophy I am working on now to deal with the disease.

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An Alzheimer’s diagnosis is devastating. At least it was for me. When I was diagnosed, I became obsessed about what changes in my life it would inevitably cause knowing what informed people say about the current state of knowledge as to what the future outcome is going to be. I worried incessantly about my wife, my children and, of course, myself.

Discovering Memories at the Movies

In retrospect, spending a lot of time worrying about myself was a mistake. It is important to plan for the future, but do not let what is going to happen in the future ruin the life you can live now, before the disease progresses. I like to think of it as “living in the now.” Living in the now means to me that we are better oﬀ to look at what we have left and not obsess about what we have lost. One problem with dwelling on what is going to occur in the future is that we may turn around someday to ﬁnd the future has run out on us.

Artists for Alzheimer’s (ARTZ) is an organization that links artists and cultural institutions to people living with dementia and their care partners. This fall ARTZ, in partnership with Coolidge Corner Theatre in Brookline, Massachusetts is producing a cinematic educational program specifically designed for people with Alzheimer’s or related memory loss. Meet Me at the Coolidge is an event that will feature iconic film clips that are specifically selected to prompt long-term memories and self-awareness for individuals with Alzheimer’s and their care partners.

As Henry James wrote in The Ambassadors in 1903: “Live all you can; it’s a mistake not to. It doesn’t so much matter what you do in particular, so long as you have had your life. If you haven’t had that, what have you had?”

Focusing in depth on icons from Hollywood’s golden age, the program will include performances by such legendary stars as Jimmy Stewart, Katherine Hepburn, Humphrey Bogart, and Judy Garland among others. In pilot programs, ARTZ educators have learned that the act of viewing certain ﬁlm scenes can have an immediate eﬀect on individuals with dementia, even

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those who have been living with symptoms for many years. Care partners, health care professionals, and loved ones also enjoy the opportunity to see participants in a diﬀerent setting—one in which they are able to thrive and achieve a greater sense of selfhood.

Depression, and old Hollywood. Volunteers and others involved with the theatres note that the viewers with Alzheimer’s can often recall considerable details about these old movies and their stars. In discussions following the movie, it is often diﬃcult to tell who is the person with memory loss and who is their accompanying care partner!

The program was created by John Zeisel, PhD, and Sean Caulfield, founders of ARTZ. To develop the program, Dr. Zeisel and Mr. Caulfield first conducted focused interviews with potential participants to determine which films would most resonate with the audience. ARTZ volunteers were given special training sessions by Dr. Zeisel and Mr. Caulfield to learn about the experience of Alzheimer’s and to develop specific approaches to keep participants’ attention focused and to make them comfortable. Test screenings have since been given at assisted living memory residences and adult day programs in Boston and New York City. Participants enjoy popcorn and soda as part of the movie viewing experience.

According to Dr. Zeisel, “When people living with Alzheimer’s disease recognize a special movie clip from their past, their responses are amazing. The insights that I have witnessed in Alzheimer's focus groups are profound and to the point, their behavior shows much less agitation and anxiety, and they themselves are transformed by the experience. The impact can last for days and participants remember the experience long after.” For more information on Meet Me at the Coolidge and other ARTZ program initiatives, visit their website at: www.ArtistsForAlzheimers.org

Research Updates The movie program gives those living with memory loss an expressive outlet and forum for dialogue through the viewing of pre-selected ﬁlm scenes, immediately followed by group discussion. Volunteers from ARTZ work with audience members to engage in reminiscence and to highlight themes, such as family, love, the Great

Hopeful News About Gammagard Gammagard (also known as intravenous immunoglobin or IVIG) is an intravenous immune system treatment made from natural antibodies taken from blood donors. Researchers have been investigating the use of IVIG in persons with Alzheimer’s and reports

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from preliminary studies suggest that treatment can limit damage to the brain caused by amyloid protein plaques and also stop brain inﬂammation associated with Alzheimer’s. In a small Phase 2 clinical trial of IVIG, researchers recently reported that patients receiving the treatment showed improvements in thinking abilities, behavior, and daily functioning. Those receiving the highest dose over the course of the three-year study showed no decline on measures of thinking, daily functioning, and mood.

early in 2013 and we will eagerly await the results. The Benefits of Exercise Findings from two recent studies support the ability of specific kinds of exercise to promote improved mental functioning and reduce the risk for dementia in those with mild cognitive impairment (MCI). MCI involves problems with memory, language, thinking and judgment that are greater than typical age-related changes, but not significant enough to interfere with daily functioning.

The ﬁndings from this study are very encouraging, but aren’t conclusive due to the small number of participants. Results of a larger Phase 3 study of IVIG’s eﬀectiveness will be released Researchers hope to keep people with MCI from advancing into dementia.

MCI places one at increased risk for Alzheimer’s or a related dementia. significantly improved attention, memory and some thinking abilities. Previous research has shown a positive effect of aerobic activity on thinking abilities, but resistance training may also provide benefits to the brain.

A Japanese study followed older adults ages 65 to 93 for 12 months. They were assigned to either a 90-minute supervised exercise program of aerobic exercise, strength training and balance training twice a week, or no exercise. At the end of the year, the exercise group showed improved memory and language abilities.

Newly Updated Clinical Trials Finder An informative and updated service from the National Institute on Aging (NIA) Alzheimer’s Disease Education and Referral (ADEAR) is making it easier for people to ﬁnd clinical research studies across the United States that are testing new ways to detect, treat, delay, and prevent MCI, Alzheimer’s, and related disorders. Diagnosed persons, caregivers, and healthy volunteers with or without a family history of

A Canadian study looked at women ages 60-to-70 with mild memory problems who were assigned to either resistance training (weight lifting), aerobic exercise (such as walking), or balance and tone exercises, twice weekly for six months. Resistance training

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Alzheimer’s or a related disorder can visit ADEAR’s clinical trial ﬁnding service at:

www.nia.nih.gov/alzheimers/clinical-tr ials The internet-based service aﬀords people multiple ways to ﬁnd clinical trials anywhere in the United States.

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Volume 18, Number 1: Fall, 2012 Open Doors for People with Dementia by Mike Howorth, Cathy Riley, Gillian Drummond and John Keady British Physician with Alzheimer’s Creates Informative Website Help is a Phone Call Away: Alzheimer’s Association 24/7 Helpline New Resource: Living with Mild Cognitive Impairment by Nicole Anderson, PhD, Kelly Murphy, PhD, and Angela Troyer, PhD Walking and Hiking with Early-Stage Memory Loss by Anita Souza Heading into the New Year with a Positive Outlook Volume 18, Number 2: Winter, 2013 Getting Through the Fog: Managing Times of Confusion by Cecily Jenkins, PhD Innovative Uses of Technology for Activity and Independence Annual Progress Report on Alzheimer’s Disease Now Available Gather at the Gallery: Creating Art and Community for People with Dementia and Their Families by Lisa Meschino, PhD Volume 18, Number 3: Spring, 2013

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A Spectrum of Disease by David Hilfiker, MD Tips for Traveling with Memory Loss Minds in Motion® by Nancy Gnaedinger and Kathy Kennedy Volume 18, Number 4: Summer, 2013 Gratitude is the One Pill Everyone Should be Prescribed by Angela Lunde You Are Not Alone: The Poetry of Lon Cole Be Prepared: How to Make the Most of an Office Visit with Your Neurologist by Orly Avitzur, MD. MBA

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people and service development. It was from this commitment that Open Doors was ﬁrst conceived with a set of values and a vision (see box on page 2). Gill, Cathy, and John were all part of the planning team that developed the Open Doors Network Facilitator’s post, but from the outset we were all clear that we wanted to purposively employ a person with dementia in the National Health Service (NHS) to lead and develop their own network. It was believed at the time, and still is today, that people with dementia should be empowered to lead, develop, and innovate their own services and support networks.

Volume 18, Number 1: Fall, 2012 Open Doors for People with Dementia By Mike Howorth, Cathy Riley, Gillian Drummond and John Keady Salford is a city in close proximity to Manchester in the Northwest of the United Kingdom. Salford has a fascinating social, economic and cultural history. For example, it was from observing and being amongst the working class people and environment in Salford in the 1840s that Fredrich Engels and Karl Marx drew inspiration to publish ‘The Communist Manifesto’. In many ways, Salford’s solidly working-class culture continues to this day. Whilst the nature of ‘mill working’ and its relationship to ‘heavy industry’ may have changed over the intervening years, Salford continues to have many socio-economic challenges and higher than national averages for vascular disease, including vascular dementia.

It was in early 2010 that Mike Howorth, a retired NHS orthodontist in his early 80s, stepped forward to take up the part-time post and position of the Open Doors Network Facilitator. Mike was diagnosed with Alzheimer’s disease in 2007 and at the time he was looking for an opportunity to give something back, to contribute to life outside the home he shared with his wife. Being the Open Doors Network Facilitator made this possible whilst also allowing Mike the ﬂexibility he needed to shape services, networks, and information for people

However, Salford also oﬀers a close-knit community and commitment to older

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with dementia in Salford in an image he wanted to reﬂect. In his role as the Open Doors Network Facilitator, Mike has spent the last two years building networks across the city of Salford and beyond, undertaking a variety of tasks and (self-imposed) duties in this process. Mike has become an ‘expert patient’ and positive role model for people with dementia at the time of their diagnosis, and acts as an inspiration to others attending the local NHS memory assessment and treatment service. Mike has also taken a lead role in the development and facilitation of the Open Doors dementia café initiative and has taken part in research and education at the nearby University of Manchester. He contributed to a DVD for helping nurses and other care providers understand more about the needs of people with dementia as they are admitted to general hospital care. Mike also values the new friendships he has made, not only with the professionals he has met, but also the many other people with dementia and their families with whom he has come into contact. Such contacts have helped Mike to develop both a ‘friendship support group’ and a ‘post-diagnostic group’, both innovations grounded in peer support, but with the friendship groups situated around the city to enable community access through public transport.

benefits of Mike’s return to work after 15 years in retirement has been an increase in his overall feelings of well-being and in confronting, and overcoming, some life-long social anxieties and fears, including public speaking. Mike also acknowledges that it was initially a ‘big challenge’ to instil in others with a new diagnosis of dementia a sense of hope and to see that his own contribution to that person’s life was positively framed and of value (Howorth et al. 2012). This validation was borne out in a testimonial to Mike from a lady who had recently been diagnosed with dementia: “When I was first diagnosed, I was very much in denial about my condition. The Open Doors network has fully supported me and others who attend. Mike, who facilitates the group, has brought me out of my shell to discuss openly my fears and concerns. Knowing that Mike, having dementia, is able to understand and empathise with us, means so much.” From the time of his initial diagnosis, Mike has been determined to find out as much as possible about Alzheimer’s in the hope that he would be able to slow down its progression. This thirst for information has been achieved by reading journal articles and books. He has what he respectfully refers to as ‘the book’ (Snyder, 2010; Living Your Best With Early-Stage Alzheimer’s: An Essential Guide), which is a publication full of

Whilst all of the above initiatives are important, one of the unexpected

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advice for those with a recent diagnosis. ‘The book’ was so helpful to Mike at the start of his own journey that within various Open Doors meetings and ventures, Mike will often discuss one or two chapters from ‘the book’ to explore if any attendees have similar problems or issues. It’s part of Mike’s overall belief system that disseminating good quality information to others with the diagnosis is the ﬁrst step in helping to confront and overcome problems and thereby live well with the condition.

about their lives. It takes a special person to dedicate this precious time of life to the good of others and to the good of people with dementia and their families as a whole. And Mike is a very special person. For more information about Open Doors, email Cathy Riley at: Cath.Riley@gmw.nhs.uk Reference: Howorth, M., Keady, J., Riley, C. and Drummond, G. (2012) Being the Open Doors Network Facilitator: Helping to increase wellbeing in living with dementia. British Journal of Mental Health Nursing, 1(2): 38-41

British Physician with Alzheimer’s Creates Informative Website Dr. Jennifer Bute was a General Practitioner in the UK, before she had to retire due to developing Alzheimer's. She had also been a caregiver to her father with Alzheimer’s. Since her own diagnosis, it has become her passion to help people understand dementia, and to reduce the stigma and hurt associated with it. She recently ﬁlmed a series of brief teaching videos covering ten diﬀerent subjects related to dementia including a medical overview and a series of practical tips for managing symptoms. You can view her excellent videos on her website at: http://gloriousopportunity.org/

Open Doors Support Network Team at the Health Service Journal Awards November 2011 (awarded Highly Commended) Gillian Drummond, Mike Howorth, Cathy Riley In the NHS and in Salford, Mike has shown himself to be a tremendous service and resource asset. His motivation and energy is infectious. He constantly challenges the professionals around him with his quest to bring an end to the stigma that surrounds the diagnosis and the need for people with dementia to be included in decisions

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There she also provides many informative handouts and slide presentations that can be downloaded free of charge.

information about aging and brain health. Staff guide individuals on how to provide and find quality care. Callers can also seek help with legal, financial, and living-arrangement decisions in addition to referrals to local community programs, services, and ongoing support. The Helpline can provide confidential care consultation by master's level clinicians who can help with decision-making support, crisis assistance, and education. A translation service can accommodate calls in 170 languages and dialects.

Help is a Phone Call Away: Alzheimer’s Association 24/7 Helpline Anyone living with Alzheimer’s, or those who are providing support, know that daily life can often be unpredictable. Questions or concerns about how to manage memory loss or other symptoms can arise at any time of the day or night and don’t always comply with the usual business hours. The Alzheimer's Association Help-line, 1.800.272.3900, provides a 24-hour a day, seven days a week helpline to provide reliable information and support to people with memory loss, care partners, health care professionals, and all others in need of assistance. Trained and knowledgeable staﬀ answer questions and concerns regarding memory loss, Alzheimer's and related disorders, medications and other treatment options, and general

New Resource Living with Mild Cognitive Impairment By Nicole Anderson, PhD, Kelly Murphy, PhD, and Angela Troyer, PhD In recent years there has been greater emphasis on detecting memory loss and other changes in cognition (thinking) at an early stage. A diagnosis of Mild Cognitive Impairment (MCI) is made when problems in cognition are greater

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than normal for one’s age and education, but not signiﬁcant enough to interfere with independent daily functioning. Over time, MCI can develop into Alzheimer’s or a related disorder.

analyzed thousands of brain scans, genes, and biomarkers in blood and cerebrospinal fluid (CSF). The original goal was to define biomarkers for use in clinical trials to determine the best way to measure effects of Alzheimer’s disease (AD) treatments. The goal has since been expanded to using biomarkers to identify AD at the earliest stage even before outward symptoms are evident. Brain imaging techniques such as positive emission tomography (PET) and structural MRI are showing scientists how the brain’s structure and function change as AD begins and progresses. Scientists are also looking at levels of beta-amyloid and tau in cerebrospinal fluid. Abnormal amounts of these proteins in the brain are hallmarks of AD. These biomarkers are also revealing other changes that could identify which individuals with Mild Cognitive Impairment will go on to develop AD.

Although symptoms may be mild, people living with MCI must make many adjustments. Living with Mild Cognitive Impairment is the ﬁrst comprehensive resource to address diagnosis, management, and treatment of the condition. Some readers may be overwhelmed by the breath of the book (over 350 pages), but much of the text is written in a friendly and informative tone that can appeal to both professionals and families. For persons with MCI, sections two and three of the book provide the most helpful chapters on managing symptoms and making lifestyle choices to improve daily living and possibly reduce risk of symptom progression.

ADNI2 extends the work of ADNI1. The overall goal of ADNI2 is to determine the relationships among the clinical, cognitive (thinking), imaging, genetic, and other biomarker characteristics of AD. This study will look at changes along a spectrum from normal aging through very mild symptoms, to mild cognitive impairment (MCI), to dementia. The study will contribute to increased knowledge about all phases of MCI and AD and the development of better clinical and biomarker methods for early detection and for monitoring

Living with Mild Cognitive Impairment is an impressive resource that combines cutting edge science with encouraging practical advice. It will stand the test of time as an invaluable go-to guide for this increasingly important topic.

Research Updates ADNI 2 Now Underway The Alzheimer’s Disease Neuroimaging Initiative (ADNI) began in October, 2004 as a landmark study that gathered and

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symptom progression. This knowledge will also help with facilitation of clinical trials to slow disease progression or ultimately to prevent the onset of AD.

stigma of dementia and urges world-wide progress in this area. Read or download this important and illuminating report at: http://www.alz.co.uk/research/worldreport-2012

For more information about enrollment in this study and for sites across the United States and Canada, see: http://www.nia.nih.gov/alzheimers/cl inical-trials/alzheimers-disease-neuroi maging-initiative-2-adni2

Walking and Hiking with Early-Stage Memory Loss By Anita Souza Recent research suggests that both exercise and socialization are important ingredients in living a quality life with Alzheimer’s or a related disorder. Besides, getting together to walk and talk can be just plain fun! The Western & Central Washington State Chapter of the Alzheimer’s Association has recently begun oﬀering two programs aimed at promoting walking and hiking activities for persons with early-stage memory loss and the initial response has been enthusiastic!

International Report on Stigma Alzheimer’s Disease International (ADI) recently released a report titled “Overcoming the Stigma of Dementia” that reviews research on the experience of stigma and dementia around the world. To learn more about stigma, ADI carried out an anonymous online survey among people with dementia and their family carers. Over 2,500 responses were received from 54 countries. Nearly two out of three respondents felt that there was little understanding of dementia in their country and that this contributed to misunderstanding or stigma about the condition. The report also discussed concerns people have regarding disclosing the diagnosis to others. Although 66% of survey respondents with dementia said they have made friends who are connected to dementia in some way, many reported experiences with friends or family who have pulled away due to the dementia. The report also provides ten key recommendations to overcome the

Our hiking programs are geared to younger-onset Alzheimer’s participants who value the chance to meet others under age 60 who are living with memory loss. Two hikes took place over the summer in regional parks and included lunch and socialization after the hike. These hikes were sponsored by Seattle Parks and Recreation. Participants hiked with an accompanying care partner, or those who were unaccompanied were paired with a volunteer who joined in on the walk. We were excited to ﬁll a need in

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the young onset community. There are just too few programs out there that address their needs. The hikes will be seasonal and we are in the process of scheduling our next outings for this group.

walking and another for more moderate-paced walkers. Our generous program volunteers who accompany participants on the walks make this possible. Without them, it would be diﬃcult to meet the varied needs of the group. The two zoo walking groups meet together at the end of the walk to socialize in the zoo cafe. These walks will go until mid-November and then we plan to take a break until after the New Year. Rainy (and sometimes snowy) weather can pose challenges in our winter months, but our participants are excited to continue meeting, rain or shine. We hope to continue the zoo walks as a standard program. However, it will be time limited to 7-week sessions and then participants can sign up again for another series. This gives staﬀ a chance to address the needs of individuals who may no longer be appropriate for this early-stage program, and help them access others activities.

Our walking program takes place in Seattle’s Woodland Park Zoo and is in partnership with Seattle Parks and Recreation and the Greenwood Senior Center. These organizations worked together with our Alzheimer’s Association chapter on all aspects of program development including volunteer recruitment, training, and site coordination. The zoo provides a nice paved path that people can walk on continuously with very few distractions, aside from the beautiful scenery and the interesting animals.

For more information about these walking programs, contact Anita Souza, Early-Stage Memory Loss Coordinator at 206-529-3868 or asouza@alz.org.

Heading into the New Year with a Positive Outlook

The ﬁrst session of the walking program provided us with feedback from participants and we learned some important lessons. Participants requested two separate walking groups - one for those who like to do speed

As the year comes to a close and the New Year is ushered in, many people take this time to reﬂect on what is most

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important in life. Some will make resolutions for the year ahead, while others may take a moment to consider what they are grateful for so they can bring in the New Year on a positive note.

“I’m going to look in the mirror, smile, and like what I see.” “I want to volunteer more so I can do something helpful for others.” “Find something to enjoy in each day. It may sound simple, but you really have to own that philosophy and practice it.”

The following reﬂections are inspired from participants in the weekly early-stage memory loss group at the UC San Diego Shiley-Marcos Alzheimer’s Disease Research Center. Perhaps their reﬂections and resolutions can inspire your own!

“I intend to reduce my handicap in golf next year!” “It’s important to look around and recognize that there are a lot of people who are worse oﬀ than we are. Focus on what you have and be grateful.”

“Starting out positive means not being as critical of myself and hopefully others won’t be as critical of me, too.”

“My grandson is expecting a baby and we’re looking forward to that positive experience in our lives. I want to visit with my family more.”

“I want to take my life back and get organized. I want to know where I’m going and do my own scheduling.” “I’m going to continue to come to the support group every Wednesday at 10:30am! It’s the best part of my week.”

“I want to slow down and take more time for reﬂection and prayer - to sit down and designate a time to talk to God.”

“If you think about the positive, you will have a better day. I plan to end each day with time to reﬂect on what is right in my life because sometimes I get too caught up in what is going wrong.”

“I don’t have a driver’s license, but I drive my husband crazy! I’m going to try to be easier on him.” “I want to eat good foods because I know that’s important for your health and I’m not so good at that.”

“Be kind to my caregiver – I want to be helpful by telling her nice things and loving her – remembering to say, ‘thank you’ as much as possible.”

“Put memory loss to work for you and forget about Alzheimer’s! It doesn’t do any good to dwell on it all of the time.

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Just get on with doing what you can do.”

shared his experience of disorientation when a dense fog descended on the beach as he was walking alone. With the fog clouding his ability to see beyond a very short distance in any direction, he found himself momentarily confused about which way to go. He described the process he used to reorient himself. First, he stopped walking so he could scan his surroundings and ﬁgure out where he stood in relation to the water's edge. Next, he looked for familiar landmarks behind or up ahead in the landscape. Then, he waited just a little longer until the patch of fog moved on before continuing his walk. By taking the time to stop and study the situation with relative calm, he was able to move along and continue safely on his journey.

“It’s important to get up in the morning and get dressed for the day so you don’t mope around. Having something to do each day keeps me going and feeling more positive about things.”

Volume 18, Number 2: Winter, 2013 Getting Through the Fog: Managing Times of Confusion By Cecily Jenkins, PhD It is not uncommon for people with early-stage memory loss to describe times when they feel more confused. These experiences can happen unexpectedly may occur in a variety of situations and settings. It can be hard to predict when the confusion will occur or how long it will last. You may feel frustrated by not being able to accomplish a task, or feel anxious or frightened when you can’t seem to problem-solve eﬀectively. These experiences can be very disruptive and discouraging, but often, episodes of confusion will eventually pass. The fog can lift, and you can return to clearer thinking.

This man's story of successfully finding his way through the fog led to sharing by others about personal experiences with confusion, or 'mental fog'. Group members discussed strategies they have found useful for finding a clearer state of mind when confusion arises, and recommendations they have for reducing confusion in the future. In the following messages, they share their thoughts and strategies with others who might have had similar experiences. Experience: “I had trouble figuring out how to turn on my computer, even though I've done it so many times before. I was pretty sure that if I just sat quietly at the desk it would come to

In a recent support group meeting for individuals with memory loss at the UC San Diego Shiley-Marcos Alzheimer's Disease Research Center, a participant

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mind in just a little while. And eventually, it did.”

DON'T let pride or worry about being a bother to someone keep you from reaching out to others whom you trust. Others generally feel good knowing they have helped out.

Recommendations: DO take some time to think through the steps needed to solve the problem. Sometimes quiet reﬂection helps bring forth the solution.

Experience: “I started noticing more confusion in the mornings right when I woke up and then things improved for the rest of the day. I wondered if it might be related to a new medication I was taking so I called the doctor to ﬁnd out if the medication could cause this symptom.”

DON'T be self-critical or get so worked up with frustration that your thinking becomes even foggier! Experience: “I had difficulty finding my car after having lunch with a friend in a part of town I'm not very familiar with. My friend was parked in a different area and she had already driven away. I did not want to bother her by calling her to come help. Luckily, I eventually recognized an orange crosswalk sign that I remembered seeing on my way to the restaurant, but it was kind of scary until I figured it out.”

Recommendations: DO pay attention to the circumstances that may contribute to your confused thinking. DON'T automatically assume that memory loss or dementia is the underlying cause of your confusion. There are other medical conditions (e.g., diabetes, infection, thyroid disorders, depression, sleep apnea) and some medications that may cause or increase mental confusion. Medical treatment or medication management of any other contributing conditions may help you think more clearly.

Recommendations: DO make note of 'landmarks' such as a prominent sign or building in the immediate area you want to remember. Make a written note of speciﬁc information that will help you ﬁnd your way back (e.g., nearest street intersection, parking row and number). DO keep a written list of important phone numbers (including family members, friends, and community service organizations such as police and volunteer ride services) with you at all times so you have contact information at hand if you need it.

These are some examples of experiences with brief mental fog, but you may have your own experiences and your own solutions. Recognize those situations or circumstances when you are at your foggiest and also when you are able to think most clearly. Perhaps the fog

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clears when you are well rested, or when there is limited noise or distraction. Sometimes routine and structure promote clearer thinking. Make a list of when you feel confused and when you feel at your clearest and do share with others your own strategies for lifting the fog!

wear in the morning. It just takes me awhile to get it together and I really can’t concentrate if I’m rushed.” “I take a lot of deep breaths and just relax when I can’t concentrate. It doesn’t do any good to get all worked up, so I try to calm myself down.” “I just focus on reading. I’ll take out a book or magazine and get involved in it and somehow my mind gets clearer.”

BRAINSTORMING We asked people with Mild Cognitive Impairment or Early Alzheimer’s: “What do you do when you have a hard time concentrating?”

“I play a game or do some kind of distraction on the computer when I get stressed and can’t concentrate. It makes me relaxed. Sometimes it makes me fall asleep, so I guess that’s a good escape when I can’t concentrate!” “Meditation can be helpful. I sit down and have a mantra I try to focus on and repeat and it helps me focus sometimes.” “I just sit with my little dog. He likes to be in my lap so I can pet him. He doesn’t care if I think clearly!” “I make sure I get enough sleep. If I’m tired, I can’t concentrate on anything. An afternoon nap is sometimes good for a tired brain and body.” “Taking notes helps me to concentrate. I keep just one or two big notepads around the house so I can jot something down when I need to.”

Here are some of the replies: “I need to be alone when I am concentrating on what I’m going to

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“I keep checklists – like when we travel, we have a list of all of the steps we need to do to get ready to leave town and the basic kinds of things we need to pack. Check lists are helpful because I can just focus on one thing at a time on the list and I don’t have to try to keep it all in my head.”

“One thing at a time and one day at a time. It’s a good motto for living, especially with Alzheimer’s!”

Innovative Uses of Technology for Activity and Independence The last decade has witnessed an explosion of computer and electronic technologies that can be both exciting and exhausting. It may feel overwhelming to keep track of advances or to wonder how it all can apply to living with Alzheimer’s or a related disorder. The following are a few informative and creative opportunities for learning how technology can contribute to your quality of life.

“When I cook, I put out the ingredients for the recipe and then when I have used the ingredient, I put it on a diﬀerent counter so I can keep track of what I have put into the recipe and what I still have to add. It helps me concentrate to see the ingredients divided up that way because otherwise I may add the same thing twice and that’s not so good when you’re cooking.”

AT Guide: Using Assistive Technology to Maintain Independence

“It’s helpful to get outside and get some fresh air when I can’t concentrate. Sometimes walking or a change of scene just helps me snap out of it and feel more alert.”

The AT Guide is an online self-help guide to enable persons with dementia to maintain independence through the use of strategies that use technology or assistive devices. AT Guide has been developed by organizations in the UK including Trent Dementia Services Development Centre in partnership with the Disabled Living Foundation, Innovations in Dementia, and York St. John University, to help people with dementia and their care partners make informed decisions about the use of assistive technology to support independence.

“I really have to cut out other distractions when I’m trying to concentrate. Never answer the phone when you’re in the middle of something because you can get so oﬀ track and then there is no way back!” “My wife can tell when I need quiet time alone. I head to my study or the work room in the garage and just hang out by myself until I feel I can concentrate a bit better.”

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Persons using the website can select topics of interest that they may have trouble with including (but not limited to) getting dressed and ready to go out; preparing meals; taking medication; keeping busy; or keeping in touch with others. Once a topic is selected, you are asked a series of questions that help to personalize your particular challenges with this topic. Once you have answered the questions, a personalized plan of action is provided with advice and practical steps to help improve your functioning and independence.

technologies (ICT) in creating meaningful activities for people with Alzheimer’s or a related disorder. Applications include the use of computers, touchscreen tablets, and other technologies in providing cognitive (mental) stimulation; reminiscence and life story review; ways for staying in touch with friends and family; and creative arts opportunities or entertainment. Helpful information includes reviews on the beneﬁts and challenges of using ICT and how to introduce technologies to persons with dementia. A complete PDF on using ICT to create meaningful activities can be read or downloaded at the following website: http://www.scie.org.uk/publications/i ctfo rdementia/index.asp .

These personalized assessments and recommendations are provided entirely free of charge on the website. The AT Guide can be used on one’s own or with the help of a family member, friend, or other care partner. For information see: http://www.asksara.org.uk/ Using Technology to Create Meaningful Activities The Social Care Institute for Excellence (SCIE) is an independent charity in the UK working with families who need a variety of care services. SCIE’s mission is to gather and analyze knowledge about helpful practices and provide resources and learning materials. The organization maintains a wealth of online information about dementia including a section on using information and communication

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Founded by Dan Cohen, a social worker and former Department of Education consultant, Music & Memory began in 2008 when Cohen distributed 200 iPods in four New York City long-term care homes and learned that the residents experienced increased socialization and better relationships thanks to listening to personalized music on these devices. The eﬀorts have now spread to more than 50 nursing homes across the US and Canada. The Music and Memory team trains professional and family caregivers on how to create and provide personalized playlists using iPods and related digital audio systems. The program seeks donations of used devices to fulﬁll their mission. For more information and very moving video footage of this inspiring project, see: http://musicandmemory.org/

Music and Memory: The Power of Personalized Music Researchers have described many beneﬁts for people with Alzheimer’s or a related disorder when they are able to listen to personalized music that is consistent with their music preferences, especially music preferences from their youth. Music & Memory is a non-proﬁt organization that programs used and donated iPods to play personalized playlists. Results reveal that those with even advanced dementia can be awakened, engaged, and have reduced agitation when listening to selections of personalized music.

Annual Progress Report on Alzheimer’s Disease Now Available Every year, the National Institute on Aging (NIA) publishes a comprehensive update on science and research advances in Alzheimer’s and related disorders from the projects and organizations that the Institute funds. This year’s annual publication provides an overview of Alzheimer’s (AD) including the biology and genetics of the disease. Risk factors, methods of

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detection and diagnosis, and developing treatments are discussed as well as advances in providing care for those aﬀected.

program in which one group will do high-intensity aerobic exercise and the other stretching. The study will begin recruiting in summer and we will keep readers informed of study sites.

The comprehensive progress report can be read or downloaded on the NIA’s Alzheimer’s Disease Education and Referral (ADEAR) website at: http://www.nia.nih.gov/alzheimers/p ublication Reading the report online also aﬀords access to some interesting video clips and interviews that help to further explain reported updates. While you’re on the website, be sure to review the many other helpful publications and resources available through ADEAR. You call also call ADEAR at 1-800-438-4380.

Research Updates Can Exercise Slow Decline in Mild

Can Deep Brain Stimulation Treat Alzheimer’s Disease?

Cognitive Impairment (MCI)?

Researchers in the “ADvance Study” are investigating a new approach to treating Alzheimer’s disease (AD). This study (clinical trial) involves a process commonly used to treat Parkinson’s disease known as “deep brain stimulation” or DBS. Electrical impulses are delivered to the brain, through a device that acts somewhat like a brain pacemaker. In this Alzheimer’s clinical trial, a device that is surgically implanted in the brain will deliver electrical impulses to the fornix,

Much research supports the beneficial impact of aerobic exercise on both heart and brain functioning. This clinical trial seeks to find out if supervised aerobic exercise can influence decline in thinking abilities, slow brain shrinkage, and reduce brain changes in people with MCI. Researchers hope to reduce the risk of MCI progressing to AD. This trial will recruit inactive volunteers with MCI to participate in a year-long

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a region of the brain that is important for memory. Researchers hope they can slow the decline of memory loss through this method. This small study will enroll 20 people at 4 sites in the US and one site in Toronto, Canada. For more information, please visit the clinical trial website at: http://www.advancestudy4ad.com/

contribute to thinking and brain changes associated with AD. Insulin nasal spray may help to regulate blood sugar and will be researched for its possible beneﬁts to people with AD. We look forward to keeping you updated on what is happening in the world of dementia research in the upcoming year, and are optimistic that there will be promising developments in 2013.

What Does 2013 Hold in Store for Other Clinical Trials?

Gather at the Gallery: Creating Art and Community for People with Dementia and Their Families

We await the results from a promising Phase 3 clinical trial of Intravenous Immune Globulin (IVIG) in persons with mild-to-moderate AD. This compound targets the amyloid protein deposits associated with AD. The study is no longer enrolling, but an overview can be read at: http://www.adcs.org/studies/igiv.aspx

By Lisa Meschino, PhD Research suggests that people with dementia appear to experience an improved sense of well being after looking at works of art or listening to music. Gather at the Gallery is a unique visual art program for people with dementia and their families living in the Canadian city of Kitchener-Waterloo. The program is led by Cara Dowhaniuk, program coordinator at the Alzheimer Society of Kitchener-Waterloo, and myself, postdoctoral researcher with Dr. Sherry Dupuis at the Murray Alzheimer Research and Education Program (MAREP) of the University of Waterloo.

We look forward to additional ﬁndings from the Alzheimer’s Disease Neuroimaging Initiate (ADNI) that is focusing on identifying the earliest changes seen in the AD brain so that treatments can be targeted to prevention or postponement of AD onset. See: http://www.adni- info.org/ Additional clinical trials in AD are ongoing, with several new compounds being prepared for launch in mid 2013. One of these includes the intranasal insulin study, which has had positive early results. Fluctuations in insulin levels may

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express themselves and form friendships. For one participant with young-onset dementia, connecting to others through art took away the feeling of ‘why me” and changed the way he felt about the disease. He said, “I was impressed by the fact that all the other people are dealing with their situations quite well…So I feel a lot more into it [the art]”. The art educators who facilitate the tours and hands-on activities also engaged with the group on a more personal level. One educator commented, “... at the end I felt that I’d made friends with some of the couples...that doesn’t often happen when you do a tour.”

Inspired by the Museum of Modern Art’s Meet Me at MoMA program in New York City, Gather at the Gallery provides an opportunity for people with dementia and their families to visit local museums and galleries for guided art tours. Participants also make art, such as pottery, collage, and glass fusion, with local professional artists. In addition, Gather at the Gallery is a research project funded by the Alzheimer Society of Canada Research Program. Through interviews and observation, I collected participants’ reﬂections on their experiences in the ﬁrst year of the program and its impact on their quality of life.

Our participants are proud of their creations. Some reconnect with a past passion for art. The husband of one woman with dementia spoke of his joy at witnessing his wife, who had always enjoyed painting, ﬂourish once again in the Gather program. She had become quieter and more isolated after diagnosis, but now joked with the instructors and other participants with renewed enthusiasm for art. Awakened to their creativity, our participants welcome opportunities to consider new ideas and relish the challenge posed by more nonrepresentational artwork. One of our oldest participants with dementia called it “a good mental outing.”

Gather at the Gallery brings together a diverse group of husbands and wives, mothers and daughters, even friends and neighbours, all of varying ages, stages of dementia, and experience with art. Making art with others who share the experience of memory loss creates a safe, social environment for people to

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Program organizers, participants, friends and family celebrated the success of the ﬁrst year of the program with a public exhibition of participants’ artwork at the Button Factory in Waterloo. The art exhibit, along with participants’ stories, raised greater awareness of how engaging in art supports continued abilities and enhances relationships of all involved.

noticed symptoms and where I am now. After that I led a discussion that went well. Yesterday I read my spiritual autobiography to our small faith community and again led an energetic discussion ﬁlled with personal sharing on all sides. In some ways, then, I feel completely unimpaired.

For more information contact Lisa Meschino: lisamarie.meschino@gmail.com

Volume 18, Number 3: Spring, 2013 A Spectrum of Disease By David Hilﬁker, MD

Photo of David Hilﬁker courtesy of Nikki Kahn

Editor’s note: We are grateful to David Hilﬁker for permission to reprint the following essay from his blog on living with Alzheimer’s, which can be viewed at: http://davidhilﬁker.blogspot.com/

The constant difficulty at this point is losing things …. all the time. It’s not that they stay lost for very long; they’re usually hiding in plain sight. At Sunday’s church service, I couldn’t find my backpack; I asked around and nobody had seen it. I searched around the (small) room for three or four minutes and finally found it in an absolutely obvious place. It was not, however, a place where I usually leave the pack nor did finding it jog my mind of having put it there. Shortly thereafter, a friend asked why I didn’t have my glasses on; I hadn’t noticed they were gone. I nearly panicked,

My symptoms rise and fall in no distinguishable pattern. Some days are good days; some days are worse. At this point in my disease, I have really no reason to complain. As far as I can tell, I’m still intellectually intact and enjoy good conversations. Last week I spoke about my Alzheimer’s to a group of people training to be hospice chaplains. I talked for about twenty minutes, sharing a bit of my previous history, what it’s been like since I

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thinking I might have left them before church at a coffee shop. I was about to run over when I noticed the glasses lying on the table next to which I’d been sitting. I rarely remove my glasses outside our house and never without a specific reason. I have no memory of taking them off or even why I might have taken them off.

Monday morning I biked downtown to a reception of the Alzheimer’s Association Advocacy Forum that is meeting here in Washington to lobby for better funding for research. I attended one of their sessions. Some of the speakers had Alzheimer’s and some didn’t. Unless they mentioned their diagnosis, however, I couldn’t tell which was which. Yet our predominant cultural image of Alzheimer’s is the old woman babbling in the corner or the man lying almost comatose in the nursing home bed.

These are tiny things. They happen to everybody. But they are happening to me many, many times a day. Several times a day, I will roam through the apartment, looking for my jacket, my backpack, my beltpack, or my slippers. Such little episodes are less frustrating than they might be because I am conscious of my Alzheimer’s and expect things like this to happen. I’m more curious than anything else. Having shared my diagnosis with people close to me, I’m not embarrassed when I have to ask them for the third time whether they’ve seen my notebook.

In fact, those of us with Alzheimer’s range across a wide spectrum of symptoms. There are a lot of us out here with early-stage disease who are still actively living our lives. Unless I die earlier from something else, I will live for many years with this disease. Right now, I have memory loss that seems signiﬁcant to me, but you wouldn’t notice it unless I mentioned it or you were paying strict attention. I still teach and engage in deep conversation. Later, I expect I’ll have more signiﬁ- cant memory loss but will still be able to function meaningfully in my family and community. Still later on, I may be quite disoriented yet still live with and contribute positively to those around me. And later I will move toward those disturbing cultural images that bother us. (Even then, I’ve been told by caregivers, I may be able to have real

The more frustrating difficulty is the decreasing inability to synthesize bits of information from various sources. Sometimes it’s quite simple stuff like stories from several computer files. Other times it’s listening to reports in a meeting and not being able to pull everything together. Most days it doesn’t come up, but it’s frustrating when it does. Usually, though, I can just remind myself: “You have Alzheimer’s, David. What do you expect?" Usually, I can let it go.

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relationships with those who care for me.)

part of something bigger than my usual little world.”

The general public would be a lot less scared of this disease if more of us with mild impairment “outed” ourselves as having Alzheimer’s and talked openly about it.

Alzheimer’s may have little impact on your enjoyment of travel but you might need to modify travel plans somewhat. Memory loss, as well as being out of your normal routines, increases your risk of losing things or becoming fatigued or disoriented. Many people with Alzheimer’s continue to travel on longer vacations or tour foreign countries, but if such trips become too challenging, shorter weekend away trips can be satisfying. You may enjoy a visit to a familiar destination such as the home of family or close friends. Consider taking a few small trips to see how you adjust before embarking on a longer trip to an unfamiliar place. When you plan for travel the following tips may be helpful:

You can email correspondence to me at: david.hilﬁker@earthlink.net . David Hilﬁker is a 68-year-old retired physician who lives with his wife in Washington, DC. He practiced for seven years in a rural area and then for ten years in an inner-city neighborhood. In 1990 he founded Joseph's House, a home for homeless people with AIDS and cancer. He has continued to write, teach, and lecture about poverty, politics, and other issues. He is writing this blog to dispel some of the fear and embarrassment that surrounds Alzheimer's.

•Simplify your travel itinerary. See fewer places in greater detail so you have more time to get accustomed to new surroundings.

Tips for Traveling with Memory Loss Many people associate the upcoming warmer summer months with vacation or travel. With the onset of Alzheimer’s or a related disorder, some question whether travel is still realistic, but travel can remain a meaningful activity. One man says, “When I travel to a new place, it takes my mind oﬀ of all my worries. I see new things and have diﬀerent kinds of experiences than I do at home. I feel

•Schedule in “down time” during your trip when you are not on the go and can rest. Build in extra time for all activities, including personal grooming or preparation each day. Being out of one’s routine requires more concentration and having to hurry increases irritability, confusion, and fatigue.

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•The Transportation Security Administration (TSA) helpline assists travelers with medical conditions including memory loss. Call TSA at 1-855-787-2227 prior to traveling with questions about screening policies, procedures, or help in getting through security

•Consider telling other travelers or tour guides that you have Alzheimer’s, or simply that you have memory loss. This may put everyone more at ease and allow others to help you, if needed. This article is reprinted from Living Your Best with Early-Stage Alzheimer’s by Lisa Snyder. http://www.amazon.com/Living-YourBest-Early-Stage-Alzheimers/dp/19347 16030

•Have identiﬁcation with you at all times. Check with your local Alzheimer’s organization for programs such as Medic-Alert/Safe Return or Project Lifesaver International so you can receive assistance if you get lost or become separated from your group.

Research Updates Alzheimer’s Prevention Registry Recruiting 250,000 Volunteers

•Bring a nightlight for your hotel bathroom so you can ﬁnd it more easily in the dark.

Scientists are launching a new era of Alzheimer's prevention research. Many researchers believe that possible therapies may be successful if given early in the disease process, before the onset of memory and other thinking problems. Now, a new initiative oﬀers a way for family members, friends, and others who have been touched by a loved one with Alzheimer’s to help combat the disease in a direct and meaningful way.

•Pack lightly! Too many items and bags create opportunities to lose things. •Ask your doctor about a mild sleep aide to use if needed. Disrupted sleep and jet lag can increase problems with thinking. Do not use over the counter sleep aides without a doctor’s approval as they can increase confusion. •Drink plenty of ﬂuids. Travel (even in cool climates) can be dehydrating resulting in increased confusion. •Keep a simple diary or take photographs to help you recall each day’s events and help you recall your trip when you return home.

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qualify. All personal information submitted by volunteers remains private and will be used only to inform a registrant about research studies. Registry members are under no obligation to participate in any clinical trials or studies. Registry members will also receive regular updates about Alzheimer’s prevention research, as well as information about brain health. New clinical trials will focus on “preclinical or asymptomatic” populations—people who are determined to have Alzheimer’s-related brain changes but who have not yet developed memory loss or other symptoms of the disease. To learn more about the Alzheimer’s Prevention Registry, access the following: Visit: http://www.endalznow.org Call: 1-888-STOP-ALZ (1-888-786-7259) Email: info@endalznow.org

The Alzheimer’s Prevention Registry launched in October 2012 by the Banner Alzheimer’s Institute in Phoenix, Arizona, is an online community of people who want to help scientists ﬁnd treatments to slow, halt, or prevent Alzheimer’s. The Registry hopes to engage up to 250,000 people across the United States who want to participate in prevention studies. “We are heading into a new phase of Alzheimer’s research, and we will need thousands of volunteers to test treatments to prevent the disease,” says Dr. Laurie Ryan, director of National Institutes on Aging’s Alzheimer’s Clinical Trials Program. Anyone 18 and older can join the Registry by providing basic information and answering a few questions about their cognitive health, family history, and caregiving status. The Registry will then serve as a go-between, assessing trials submitted by researchers and e-mailing enrollees about studies for which they might

Optimism and Resiliency Linked to Successful Aging Findings from a study by Dilip Jeste, MD and colleagues at the University of California, San Diego and Stanford University reported on components of successful aging. After surveying over 1,000 older adults, ages 50-99, the researchers conﬁrmed that attitude plays a signiﬁcant role in successful aging, regardless of physical or mental decline. The researchers report that the primary ingredients in successful aging

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include resilience, optimism, and absence of depression. Dr. Jeste notes that we do have some control over whether we age successfully despite physical or cognitive (mental) decline.

back. You just have to keep at it and keep going. Don’t let other people push you down.” “You can compensate, withstand, and bounce back.”

BRAINSTORMING

“Part of resilience is analyzing what happened and making plans to change if necessary so you can move on – adjusting when it’s necessary.”

Based on a discussion of the research ﬁndings of Dr. Dilip Jeste, we asked people with Mild Cognitive Impairment or Alzheimer’s: What Does Resilience and Optimism Mean to You?

“Humor is essential to resilience. It would be hard to face the future knowing what you know if you didn’t have humor.”

The following are some of the replies: “If you don’t feel resilience in some way, you give up and you don’t want to do that, so that’s why we’re all still here. We’re not giving up.”

“What makes you go on is feeling that you can get better so that’s optimism or resilience. My memory may not get better, but other things in my life can improve.”

“I attend my support group because it makes me feel hopeful and when I’m in the group, I realize that we’re all a pretty resilient group of people despite Alzheimer’s or whatever else we have.”

“There is rational and irrational optimism. It’s important to be positive when possible, but to also be realistic so you can manage challenges and try to overcome them.”

“Resilience is the ability to bounce back from challenges. Pick yourself up, dust yourself oﬀ, and start up again” “The ability to adapt is important in resilience and you have to adapt a lot when you have Alzheimer’s.”

“Accept the things you cannot change and have the courage to change what you can. I learned that in AA (Alcoholics Anonymous) and it applies to Alzheimer’s, too.”

“You’re being resilient when you’re pushed so far, but you manage to come

“Laughter reﬂects optimism.” “If you want to stay optimistic and not get depressed, part of it is chemical and

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part of it is the messages we tell ourselves. I used to get mad at myself, but I had to ﬁx my attitude.”

provided by the coordinators, or they may do something more active like table tennis. Many choose to simply socialize. It’s up to them. Refreshments are always served.

“I avoid negative people. They bring me down. At this time in my life in order for me to be resilient, I need to surround myself with positive people and experiences.” “Optimism is forward thinking. It’s important to be hopeful.”

Minds in Motion® By Nancy Gnaedinger and Kathy Kennedy Minds in Motion® is a weekly, community-based, combined exercise and social program for persons with early-to-mid-stage dementia and their care partners-- usually a spouse, but sometimes another relative or companion. Unique to the Alzheimer Society of British Columbia, it is delivered by paid Society coordinators, qualiﬁed ﬁtness instructors, and volunteers in community or senior centres throughout both the urban and rural regions of the province.

The program does not cost community/seniors centres anything other than the space they provide for two hours per week, some Minds in Motion® marketing included in their regular marketing, and staﬀ time for registration. The modest per-pair registration fees cover the cost of the ﬁtness instructor. The Alzheimer Society covers the cost of coordinators and refreshments. The break-even number for a group is typically eight pairs of participants.

The program consists of 45 minutes of exercises, appropriately chosen and demonstrated for the group by the ﬁtness instructor, then 45-60 minutes of social time, facilitated by the coordinator, volunteer(s), and the care partners who are natural helpers. During the social time, participants may play a variety of board or word games

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Minds in Motion® is a runaway success! Since its launch in 2009 in British Columbia, it has grown from one program in one location to 26 in 23 locations. A 2012 program evaluation, which included observation and interviews with 73 people (care partners, persons with dementia, coordinators, ﬁtness instructors, volunteers, and community centre personnel) revealed multiple beneﬁts to persons with dementia, their care partners and others.

themselves; “having fun;” and establishing supportive relationships with other care partners beyond the program time. For both persons with dementia and their care partners, beneﬁts are: having something to look forward to, “a reason to get out of the house” and a topic to talk about afterwards; joining others in a “safe place to go;” a “good cognitive workout” and sharpened thinking sometimes lasting 2-3 days; “feeling energized” and in an “elevated mood” after each session; and social acceptance or “not dying socially.”

For persons with dementia, benefits include: physical gains such as improved balance, mobility, and flexibility; increased comfort and confidence in their situation; freedom to participate within their capabilities; decreased reliance on their care partner for awhile in a stress- free environment; an opportunity to “come out of their shell;” a time to relax and smile more -“It’s a lot of fun!”; increased social connectedness and a chance to make friends-- “It’s wonderful to see other people;” and the satisfaction of success.

Host community/seniors centres benefit by: expanding their client group to include older persons with dementia; gaining new clients who might sign up for other programs; and increasing their own staff’s awareness of persons with dementia who live in their community. Key elements for program success are: the “right” setting -- an accessible community/senior centre with suitable room(s) for the program, including a kitchen and nearby washrooms; the “right” staff -- a coordinator, fitness instructor and volunteer(s) who are knowledgeable, skilled, energetic, flexible, observant, compassionate and positive; reliability regarding where and when the sessions are held; the combination of exercise and social time; the program’s flexibility in allowing participants to choose which exercises

For care partners, beneﬁts include: physical improvements including core strength and ﬂexibility; increased understanding of both the disease and self-care; learning new coping strategies from peers; a break from sole responsibility - “Being part of it and not having to lead: it is liberating;” a feeling of “relief, respite;” witnessing their partner with dementia enjoying

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or games to participate in; an atmosphere of normalization, acceptance, safety and encouragement; the opportunity for the person with dementia and their care partner to go together; and a chance for care partners to “de-stress [during] one time of the day when they are not in charge.”

The website was developed through a 17- person project team of persons with dementia, family members, health care professionals, and educators. This comprehensive and informative website oﬀers information on managing health care and your health care team; strategies for living well including communication, quality of life, and emotional well-being; care and support; and planning ahead. The site also provides news updates related to dementia research or other ﬁndings.

For more information on Minds in Motion®, contact Nancy Gnaedinger, Consultant in Gerontology, Victoria B.C. Canada at gnaedinger@shaw.ca or 250-477-5057 or Kathy Kennedy, Director, Programs and Services, Alzheimer Society of B.C. at kkennedy@alzheimerbc.org or 604-742-4910.

To access this helpful website, see: http://livingwithdementia.uwaterloo.c a/index.html

Helpful Resource

Volume 18, Number 4: Summer, 2013

Living with Dementia – Resources for Living Well

Gratitude is the One Pill Everyone Should be Prescribed

Living with Dementia: Resources for Living Well is a web-based tool for persons with dementia and their care partners developed by Murray Alzheimer Research and Education Program (MAREP) at the University of Waterloo in Waterloo, Canada. The intent of the site is to provide information and resources that will help enable those newly diagnosed with dementia and their families to have the necessary information to live well and help prepare for the road ahead. Everything is collected in one place, so your search for current and reliable information is easy.

By Angela Lunde Editor’s note: Angela Lunde is a dementia education specialist at Mayo Clinic’s Alzheimer’s Disease Research Center in Rochester, Minnesota. We are grateful to Angela for permission to reprint this essay from her informative and insightful Alzheimer’s blog. To view the blog, see: http://www.mayoclinic.com/health/alzheime rs-disease/DS00161/TAB=expertblog

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A new pill is available that's likely to improve your energy and resiliency, enhance your immunity, lift your mood, oﬀer you greater feelings of joy, and improve compassion toward self and others. And it has no side eﬀects. Will you take it?

is necessarily great. It just means we are aware of our blessings." Gratitude shifts our focus from what our life lacks to the abundance that's already present. The truth is that each of us has something good in our life that millions of others don't. And when we are regularly mindful of what we have to be grateful for, we can be happier, more resilient, our relationships strengthen, and our burdens often lift. Gratitude enriches human life, no matter what our situation. Today, research is charting evidence that gratitude opens the heart and activates positive emotion centers in the brain. When we focus our attention on the things for which we're grateful - the blessings in our life - we can actually change the way neurons in our brain are wired. Ultimately, this means that with practice, we can cultivate positive states of mind. Sarah Ban Breathnach, author on the topic of gratitude, writes, "Real life isn't always going to be perfect or go our way, but the recurring acknowledgement of what is working in our lives can help us not only to survive but surmount our diﬃculties." Dr. Amit Sood, director of research and practice and complementary integrative therapies at Mayo Clinic says, "Without gratitude, happiness is not accessible."

In a posting on our blog a couple of weeks ago, Raymond oﬀered thanks to his wife for attending our conference and shared how it fed her spirit, and as a result his, as well. He spoke of the love he and his wife still have for one another and the acceptance that resonates in their home. Raymond said he has a memory problem and now depends on his wife. However, gratitude was Raymond's prevailing message. Gratitude is that pill. Many of us probably don't think about gratitude all that often in our day-to-day lives. Although most of us will habitually focus on what's going wrong - the feelings of rejection, the losses, hurts, our imperfections. It's easy to draw our attention away from what we have and into that dark place of what we don't have, or think we need. Being grateful doesn't mean we deny what's wrong or diﬃcult or unfair in our life. Robert Emmons, professor of psychology at the University of California- Davis, and one of the foremost authorities on the topic of gratitude, says, "To say we feel grateful is not to say that everything in our lives

No doubt though, gratitude doesn't seem to come as easily as grumbling, so it really does take practice. There are

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many methods to develop the practice of gratitude. A gratitude journal is one way. It consists of writing down a few things each day for which you are grateful. Some days it may be the basics - your home, a friend, the ﬂowers you bought yourself to brighten the room, your health, your pet, a comfortable bed to wake up in. Breathnach's book "Simple Abundance Journal of Gratitude" is one such tool.

Who are you grateful for? How do you express your gratitude? When will you ﬁnd time each day to think about the importance of gratitude and to acknowledge all that you are grateful for? Think about these questions and try to discuss your answers with loved ones or friends. Feelings of gratitude can spread good will and a sense of hope when they are shared with others.

Now back to Raymond. He's not denying he has memory problems or that he is becoming more dependent on his wife, yet this is not what he chooses to focus on. Raymond chooses gratitude. He is grateful for what he has - the capacity to love and feel love, grateful for the ways in which his wife lifts her spirit and his, and grateful for the bond they continue to share. Clearly, Raymond chooses the gratitude pill.

You Are Not Alone The Poetry of Lon Cole Lon Cole was born in the San Francisco Bay Area, California. He served in the Navy as a combat medic in the Vietnam War where he was decorated as a war hero for gallantry and distinguished service to his fellow soldiers. This determination to help others is reﬂected in the diverse career paths he has experienced, including surgical technician, police oﬃcer, private security, and a business owner and entrepreneur.

"Gratitude unlocks the fullness of life. It turns what we have into enough, and more. It turns denial into acceptance, chaos to order, confusion to clarity. It can turn a meal into a feast, a house into a home, a stranger into a friend. Gratitude makes sense of our past, brings peace for today, and creates a vision for tomorrow." - Melody Beattie

Four years ago at the age of 61, Lon was diagnosed with early onset Alzheimer's. This challenge has motivated him to write, and the poetry has ﬂowed freely as he puts his eﬀorts to lift others into his poems. He currently resides in Puyallup, Washington surrounded by his family.

Editor’s note: How would you answer the following questions? What are you grateful for?

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Where Am I Going

It doesn’t matter if you’re rich or poor Or have several degrees on the wall What matters the most is your attitude Getting up each time that you fall.

Where am I going? Will I ever get there? Will somebody know me? Does it all seem fair?

You can’t be afraid of what you might face The road could feel lonely or cold Though you are only one of the human race This is the time to be bold.

I’m sure there is someone who feels what I feel But has trouble expressing the pain that is real.

Celebrate survival the best way you can Remember all the good times you had So when the dark days come into your path You won’t waste your time feeling sad.

But I must keep going and steer from the past For each day is hopeful, and nothing is cast. I’ll look for tomorrow and live for today And hold to the good as it passes my way. I’m strong to the challenge and must be sincere For life is a gift so precious and dear

The third edition of Lon’s published poems can be found on sale on Amazon.com and createspace.com. The author donates half of all royalties to the Alzheimer’s Association. For bulk sales, contact Brown and Sons Publishers at 720-436-6397 or email them at: BSP@salesperson.net .

A Great Journey Dementia is a great journey Where too many have to go You can’t try to run from it No matter how much you know. Some say denial is the way To avoid the pain you endure Others decide to face it straight on They hope there might be a cure.

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requirements for record-keeping, and complete a variety of other administrative tasks. I make a big eﬀort not to leave patients feeling neglected, but every once in a while, I fear that I have failed.

Be Prepared How to Make the Most of an Oﬃce Visit with Your Neurologist By Orly Avitzur, MD, MBA

In addition to the shrinking face-to-face time available during the office visit, we are experiencing a growing shortage of neurologists in many parts of the United States. Since you may have to wait longer these days to get seen for a shorter period of time, making the most of your office visit is critical. That means arriving prepared to your first visit so that office staff won’t waste time searching for results or reschedule you because vital information is missing or needs to be tracked down.

Editor’s note: If you have Alzheimer’s or a related disorder, it is very helpful to be under the care of a neurologist. These doctors specialize in the human nervous system, which includes the brain. Neurologists have special expertise in brain disorders that can cause memory loss or dementia (a general term for over 70 diﬀerent causes for decline in thinking and functioning). This essay has been revised and reprinted with permission from Neurology Now, the American Academy of Neurology’s magazine for patients and caregivers. To subscribe, go to http://bit.ly/guAWLr .

MAKE A LIST OF YOUR KEY CONCERNS TO TALK ABOUT One of my patients has a habit of voicing new and often worrisome symptoms just as he is leaving my oﬃce. Recently he confessed, “Oh by the way, I’ve been passing out behind the wheel of my car… See you in a few months.”

As a neurologist in private practice, I often wish I had more time to spend with each of my patients. But in addition to spending time on their care, I have to make sure that I document the visit accurately in their electronic health record, meet new governmental

It’s important to plan what you want to tell your doctor. If possible, let you physician know at the start of the oﬃce visit (or even before the visit, such as by phone) about changes in your health. Make a list of the top three things you want your neurologist to know and

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bring it with you to your visit. If you feel that not enough time has been spent covering all your health issues, ask your doctor if it would be best to schedule another appointment to discuss your additional concerns.

FIND OUT ABOUT TEST RESULTS It’s wise to bring copies of any test results or laboratory work ordered by other physicians involved in your care. Unless you receive care at a multispecialty group in which all of your doctors are networked through a common electronic records system, your doctor may not have easy access to test results. If your doctor doesn’t have a test result, essential treatment may be delayed or overlooked. Moreover, unless you track your tests, you may risk unnecessary duplication of procedures.

MAKE A DIARY OF YOUR SYMPTOMS One of the most effective measures you can take to assist your neurologist in the evaluation of your condition is to record a symptom diary prior to your visit. Diaries completed before follow-up visits offer valuable information to determine if medications or other interventions have been effective.

MEDICATION LIST One of my patients, a 95 year-old gentleman, brings a computerized print-out of all his medications to every visit. It never fails to bring a smile to my face. An updated record of medications likely tops your physician’s wish list of the most valuable information you can bring to the oﬃce. I advise all of my patients to maintain a list of their medication – prescription and over-the-counter vitamins and supplements – and carry it in their or wallets or pocketbooks. If you’re tech-savvy, iTunes apps like “My Medications” allow you to keep your list on your iPhone or other devices. Some doctors prefer that patients bring all of their prescription bottles to the oﬃce so that they can verify drug names, dosages, and schedules because sometimes patients are taking multiple

BRING A FRIEND OF RELATIVE It’s easy to get flustered when seeing a doctor, especially if the news is worrisome or the instructions are complex. If you bring a friend or relative with a pen and paper, you’ll have another set of eyes and ears to confirm what the doctor said about your condition, how to take your medication, what side-effects may occur, and which tests need to be scheduled before you return. That person can also ask questions to help carry through the doctor’s orders. What’s more, a friend or relative can help the doctor take a better history.

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medications that are working against each other.

their contact information, to your oﬃce visits.

Bringing a complete list of medications – as well as a record of allergies and previously poorly tolerated medications – will help your doctor avoid duplicating your medication or prescribing a drug that caused side-eﬀects in the past.

FOR MORE INFORMATION For more information on preparing for an office visit, see the American Academy of Neurology’s (AAN) informative website at: http://patients.aan.com/ Click on the heading “Working with Your Doctor” where you will find information on preparing for an office visit, patient rights, and finding a neurologist in your community.

PREVIOUS MEDICAL RECORDS I ask patients to request that their records be faxed to me but also to follow up with a call asking my staﬀ if they received the information. Your involvement in your own care will help ensure that your doctors have access to your health information and help them provide you with the best care possible.

HELPFUL RESOURCE Talking with Your Doctor– A Guide for Older People Constructive and caring communication between a doctor and patient is an essential part of good healthcare. It is important to take an active role in your health maintenance and medical treatment, and to feel that you and your doctor can work as a team.

INSURANCE INFORMATION Make sure you know what insurance information you should bring to your appointment. Bring up ﬁnancial concerns prior to your appointment, before you incur any fees. Most practices are willing to discuss payment plans if the patient is unable to meet the fees.

The National Institute on Aging (NIA) has an informative and practical booklet on how to talk with your doctors. Contents include:

LIST OF OTHER HEALTH CARE PROVIDERS

> Choosing a doctor you can talk to > Preparing for an appointment

If your medical care is not coordinated under one health care system with access to your health records, bring a list of all of your physicians, along with

> Giving the doctor information

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> Asking questions and receiving information

For example, changes in language, problem-solving, or judgment can combine with memory loss to make routine tasks or hobbies more difficult. You may make financial mistakes, miss important appointments, or no longer be able to figure out how to repair something. Often these changes are gradual and the boundary between MCI and early-stage Alzheimer’s or a related disorder can be blurry. Regardless of whether a diagnosis is MCI or AD, it is important to focus on your abilities, and ask for or accept a little help, when needed.

> Making decisions with your doctor > Discussing sensitive topics > Involving your family or friends in medical communication

Questions and Answers Q. I have been diagnosed with Mild Cognitive Impairment, but my doctor says it could shift to Alzheimer’s disease in the future. How will I know if I start to develop Alzheimer’s?

Research Updates Upcoming Clinical Trials for participants with Memory Loss and Those at Risk

A. Mild Cognitive Impairment (MCI) is diagnosed when changes in thinking (usually a decline in memory) are greater than expected for one’s age or education, but not so significant to affect one’s ability to function independently in daily activities. For example, you may have memory loss that requires that you develop better methods for managing medications, keeping track of appointments, finding your way in unfamiliar places, organizing finances, or doing routine cooking. You may need some prompting or reminders, but once on track, you can manage independently.

SNIFF – The Study of Nasal Insulin to Fight Forgetfulness The purpose of the upcoming SNIFF study is to ﬁnd out whether a type of insulin, when given as a nasal spray, improves memory in adults with a mild memory impairment or Alzheimer’s disease (AD). The rationale behind the study is growing evidence that insulin carries out multiple functions in the brain and that poor regulation of insulin may contribute to the development of AD.

MCI moves into early-stage Alzheimer’s when problems with thinking aﬀect more than just memory AND these problems impact on your ability to do daily tasks or activities on your own.

In this study participants will be given a nasal spray device with either insulin or placebo. Participants will be

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randomly assigned to the treatment or the placebo group for 12 months followed by 6 months in which all participants will receive insulin. During the ﬁrst 12 months, neither study participants nor study staﬀ will know who is receiving active treatment and who is receiving placebo.

developing AD in the future. This has led to a new body of research that aims to prevent or postpone the onset of AD by providing experimental treatment prior to symptom onset to those at highest risk of developing the disease. Early next year, a new study will begin enrolling 1000 participants whose PET scan reveals amyloid protein deposits in their brains (a hallmark of AD) but they do not have any symptoms of memory loss. Half the participants will be given a placebo and half, a drug called Solanezumab. This drug has been shown to clear away amyloid plaques in the brains of individuals with AD, but clinical trials did not show resulting improvement in thinking or functioning in persons already living with AD symptoms. It is thought that the drug may need to be given earlier before too much damage from the plaques has occurred. By administering the drug well before outward symptoms begin, the prevention of amyloid plaque build-up may also lead to the prevention of developing AD.

When the study begins in late 2013, researchers will be looking for 250 adults diagnosed with amnesiac mild cognitive impairment (aMCI) or early AD who would like to participate. The study will take place at about 30 research clinics nationwide. Participants must be fluent in English or Spanish. Persons who take medications for diabetes are excluded from this trial. For more information, contact Jeffree Itrich at 858-246-1317 or jitrich@ucsd.edu A4 – Anti-‐Amyloid Treatment in Asymptomatic Alzheimer’s Disease Scientists believe that Alzheimer’s disease (AD) changes in the brain may begin 10-to-20 years before outward signs of memory loss or other changes in thinking or functioning become apparent. Using markers derived from spinal fluid, genetic testing, and sophisticated brain imaging (PET scan) researchers are now able to suggest who may be more at risk of

For more information on this trial visit the Alzheimer’s Disease Cooperative Study at: http://www.adcs.org/Studies/A4.aspx

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Volume 19, Number 1: Fall, 2013 Thoughts on the Experience of Alzheimer’s The Buddy Program: Individuals Living with Alzheimer's Mentor Medical Students by Darby Morhardt, PhD, LCSW Volume 19, Number 2: Winter, 2014 Reflections on Being Resilient Mindful and Spiritual Living with Alzheimer’s by Lou A. Bordisso, Ed.D Living Well with Alzheimer’s: Our Perspective by Ken and Mary Margaret Lehmann Volume 19, Number 3: Spring, 2014 Thoughts On Having Alzheimer’s by David Partridge Outside The Box by Lon Cole Dementia Alliance International

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The Dangers of Dehydration Volume 19, Number 4: Summer, 2014 Living with My Muted Memory by Jennifer Snyder The Benefits of Meditation Understanding the Practice of “Mindfulness”

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There is always a startled feeling when I forget something that I could have talked about yesterday. If I sit with it a while, maybe it will come back. An hour later the whole thought may return, but it’s too late because the moment has passed.

Volume 19, Number 1: Fall, 2013 Thoughts on the Experience of Alzheimer’s Editor’s note: The following reflections are the words of Betty, revised from the book “Speaking Our Minds – What it’s Like to Have Alzheimer’s” by Lisa Snyder. I think it’s just within the last year that I’ve noticed I have a memory problem. As a social worker, I dealt with people who had memory problems, so now it’s a matter of being honest about my own. I’ve been in the same swimming class for two years, and I don’t remember everyone’s names. They just escape me. I have to listen to people calling other people by name so I can catch on. I find all kinds of ways of doing that! I’ve learned many ways to get around not knowing someone’s name by relating to the person first and seducing them into doing more talking. If they talk about five minutes, pretty soon I have enough clues. I can usually identify more quickly with what people do, and where they come from, than their actual name.

Sometimes I can say, “Oh, I forgot to tell you this.” But it’s all a matter of timing.

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Also, I know that I may take something away from home, put it in my pocket, and then be completely unable to determine what I did with it. I just don’t recollect. Things like that happen sometimes. It’s there. I’m aware that my memory doesn’t work as well as it used to.

are described scare people—that we’ll walk blindly into a car because we’re lost and wandering. It isn’t necessarily true, but people get an idea. When it comes to Alzheimer’s, you’re not sure how people will respond to you. None of us like unexpected responses. People may brush you away because they are afraid of the disease. They may feel uncomfortable because they don’t know what to say to you. It’s very diﬀerent if you know that you are talking with someone who is familiar with the disease; there is a safety net when you talk with people who understand and care about your condition — people who don’t step on your feelings or minimize your problem. When you forget something and somebody says, “Oh well, it’s not important,” maybe it was important. It shouldn’t have been forgotten, but it was, and you need an explanation for yourself.

It helps that I’m not alone in this. For the time being, Kurt is there to correct me on things, and I also correct him sometimes. But as long as Kurt can stay one step ahead of me, I’m not going to worry. We’ve been a team for a long time, so I guess I don’t have much choice in the matter and neither does he. I’m more dependent now, and I’ve never been particularly dependent. I’m not glad about the fact that this is happening. But I know that I have no choice at this point. Sometimes when I forget something, Kurt has to get hold of himself and not get all uptight about it. Obviously, he’s having to learn this over a period of time. It irritates me that he gets ticked oﬀ over something that I’ve forgotten, and every once in awhile I blow up. I’m sorry about it, but I just forget things.

People may deny that they have Alzheimer’s disease because they don’t have the opportunity to talk with other people who are sympathetic and understanding and who will help them along in the whole process. That’s a sad state of aﬀairs. Anyone who has this diagnosis needs to have others with whom to talk.

In the past, people never uttered the word Alzheimer’s for fear that they would catch it. They were defending against it. It used to be that way around cancer. But now Alzheimer’s disease has a lot of attention, and the symptoms that

In a way, Alzheimer’s is a learning experience. I used to be able to retain a lot of information that could easily be

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recalled at any time, and that ability is diminishing. I’m learning that I can’t always rely on that information. So instead, I may answer someone’s question with another question. We all do that. It’s a process of trying to help ourselves.

But there are some people who don’t want to learn, and it’s the looking down on and being demeaning of people with Alzheimer’s that is hard to watch. I’m all for support groups for people with Alzheimer’s disease. That’s one of the best ways to find out how varied this disease is. The primary value is in sharing experiences about a common issue without having to put up a wall because you’re concerned about how people are going to respond. The main issue is to help people to be open about Alzheimer’s—not to privatize it, especially within the family. Very often the tendency with something like this is to hold it in and suffer with it. But it isn’t necessary to suffer alone. People with Alzheimer’s are curious about what all of this is going to mean to their lives, and if they can get some sense of this through a support group, then they can move into this process more at ease. That’s very important.

Also, I’m observing myself and other people a little more closely. I’ve always been very sensitive to body language, emotions, and attitudes. I can tell from how a person moves whether it was a good thing or bad thing that I said. I have to use my intuition a lot more than I used to in order to pick up on the meaning of what people are saying to me. These are skills that I had training in as a social worker, so at least I’m prepared. I think the most urgent issue for everyone is to learn the whole business of acceptance. I’ve seen too many health care professionals who have never made it to that phase. They know the diagnosis, but they don’t take time to ﬁnd out what it truly means for that person. This casualness with which professionals deal with Alzheimer’s is so painful to see. A person with Alzheimer’s disease is many more things than just their diagnosis. Each person is a whole human being. It’s important to be both sympathetic and curious and to have a real interest in discovery about who that person is. You have to really be willing to be present with the person who has Alzheimer’s.

Reprinted with permission. To read more reﬂections from individuals with Alzheimer’s, see “Speaking Our Minds – What it’s Like to Have Alzheimer’s” by Lisa Snyder. Baltimore: Health Professions Press, Inc., 2009. http://www.healthpropress.com/

MAILBOX Editor’s note: We heard from many readers, including the following, who appreciated our Summer issue cover article on gratitude that was written by Angela Lunde:

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I’m grateful for friends who stand beside me in all instances

Hi Lisa, A recent focus theme in our Mind Matters Group was Gratitude. We discussed the ways you can show gratitude to someone including a thank you card, a phone call, ﬂowers, a meal, or a smile. I put together a group poem using some of the thoughts expressed by our group regarding things they are grateful for.

I’m grateful for being part of this group. Barb Brandt, LCPC, Program Manager North Shore Senior Center House of Welcome Adult Day Services Mind Matters Early Memory Loss Program Northﬁeld, IL

Gratitude

Questions and Answers Q. With holidays coming up, I know we will be going to some gatherings with lots of family and friends. I’m nervous mostly because I can’t remember names! Do you have any advice?

I am grateful for the career I had as a teacher For good health for myself and my family

A. We asked people with memory loss to answer this question and here are some of the replies:

I’m blessed to have the men in my life, my husband and sons I’m grateful for being alive and to be able to walk and smell the roses

“The connection is more important than the name. Connection is something that happens between people and maybe that’s what we need to focus on and not the name.”

For music, kisses, jokes, chocolate, sun, smiles and church I’m grateful for my sweet wife of 60 years, and I thank God for every minute of it

“If you are concentrating on someone’s name and trying to remember it, then you are missing the whole conversation you could be having because you’re obsessed with the name.”

For the opportunity to be a teacher and a coach and to have a wife who supports me

If the name doesn’t come up right away when you see someone, ﬁnd some other way to connect – comment on something else about them or the day or

For the ability to travel

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something. Maybe there is something you remember about them that you can talk about even if you don’t remember their name.”

Alzheimer’s should limit or eliminate their alcohol intake. Alcohol can temporarily worsen symptoms by impairing concentration, memory, speech, problem solving, and judgment, as well as physical coordination and balance. This balance concern is especially important for persons with Lewy Body dementia who have greater risk of falling. Alcohol intake can also increase irritability, contribute to depression and diﬃculties with sleep, and interact dangerously with some medications.

“My kids and I have an agreement that if someone comes up to me at a party, one of my family members will try to address the person by their name so that I can hear it. Not that I’ll remember it, but it spares me that awkward moment.” “Don’t let the fear of forgetting someone’s name keep you from socializing. We’re social beings and we don’t want to become hermits. If you keep the groups smaller, you can rehearse the names ahead of time. I do better in smaller groups. But in big groups, I just give it up and just say, “Hey – good to see you!”

Consult with your physician about alcohol consumption. Any recommendations may depend on your alcohol use history, the medications youare taking, and the impact of alcohol on your dementia symptoms. Although a toast of champagne at New Year’s is not likely to be harmful, if your physician recommends abstaining from alcohol, consider switching to non-alcoholic beverages or sparkling juices that are available in most supermarkets.

“Look, I’d rather forget the name and remember something about the person than remember the name but not anything about who it is I’m talking to. Just focus on what you CAN remember, not what you can’t.”

RESEARCH UPDATES Q. I sometimes drink a little more over the holidays because of all of the parties. Is alcohol bad for my dementia?

The Importance of Sleep There has been growing interest in researching the relationship between poor or limited sleep and the risk for developing Alzheimer’s disease (AD). This fall, two separate reports about sleep reveal its important in brain health and the risk for AD. The ﬁrst paper is

A. Alcohol consumption aﬀects each person diﬀerently. Although a history of mild alcohol intake may actually help to prevent Alzheimer’s, many physicians recommend that people who do develop

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from Johns Hopkins University where researchers found that poor sleep quality was associated with greater amounts of beta-amyloid in the brain. Beta-amyloid “plaques” are a hallmark of AD and are destructive to brain cells. Participants reporting more than seven hours of sleep had the least beta-amyloid in the brain. Those reporting less than six hours of sleep had the most, and those reporting between six and seven hours have an intermediate eﬀect.

fragments of beta-amyloid that could ultimately become damaging plaques. Both studies shed light on a possible way in which sleep may remove beta-amyloid from the brain and reduce the risk of developing AD. These studies do not suggest that better sleep can remove amyloid plaques that have already deposited or that good sleep can cure AD. However, for overall brain health and for better quality of life for those living with AD, it is important to have any sleep problems or disturbances evaluated by your physician to ensure that you and your loved ones get a good night’s sleep on a regular basis. We are grateful to Michael Raﬁi, MD, PhD for this summary of sleep revised from his blog at: http://www.adcs.org/Blog/ADCSBlog. aspx Having a Sense of Purpose Findings from a study at Rush University Medical Center in Chicago reveal that having a sense of purpose in life, or believing that what you do matters, may help to oﬀset some of damage to the brain caused by AD. Rush researchers have studied more than 1,500 seniors since 1997 and all were free of dementia at the start of the study. The participants all had yearly evaluations to determine their overall wellbeing, including their sense of

The second paper is from researchers at the University of Rochester, New York, where researchers explored the purpose and beneﬁts of sleep. Through their work in laboratory mice, they demonstrated that during sleep, the brain cleans itself and removes waste that accumulated during waking hours. This “waste” can include the removal of

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purpose in life. In the study, 246 participants ultimately died, and their brains were autopsied for signs of the plaques and tangles found in AD. The researchers found something very interesting. Those who reported a high sense of purpose during life were just as likely to have plaques and tangles in the brain as those who reported little sense of purpose. But despite having the same amount of plaques and tangles, those who had reported a strong sense of purpose during life had generally scored higher on tests of memory and other areas of thinking despite the plaques and tangles.

The Buddy Program Individuals Living with Alzheimer's Mentor Medical Students By Darby Morhardt, PhD, LCSW Editor’s Note: In our cover story, Betty discusses her concern with healthcare professionals who aren’t interested in understanding the whole person behind the Alzheimer’s diagnosis. The following article presents an inspiring remedy to this problem and is revised and reprinted with permission from The Caregiver newsletter (Fall 2013) of the Duke Family Support Program. See http://www.dukefamilysupport.org/. For more information about The Buddy Program, contact Dr. Morhardt at: d-morhardt@northwestern.edu .

The researchers, led by Patricia Boyle, PhD, suggest that purpose in life may help to protect against the harmful eﬀects of plaques and tangles on memory and other thinking abilities. Participating in meaningful and purposeful activities may promote greater cognitive (thinking) health. Although having a sense of purpose cannot reverse symptoms of AD, putting remaining social and cognitive skills to use through meaningful activity may play an important role in living your best with AD.

First year medical students paired with a mentoring “buddy” with early-stage dementia “I think that as doctors, it may be easy to have the disease state overshadow everything else – and forget the reality of a disease as it eﬀects the patient’s life

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– and the lives of their loved ones. I truly believe that a program like this has enabled me to see the other side of the diagnosis – and will only enhance my ability to practice later on.” - Buddy Program Medical Student Participant

physician who, after being diagnosed with Alzheimer’s, was no longer able to practice medicine but believed he was still able to impart valuable experience and knowledge and ‘mentor’ a medical student. The goals of the Buddy Program are to:

There is a growing concern over who will provide for the care of our aging population. Unfortunately, studies show that healthcare professionals and physicians in particular, tend to have a negative attitude toward older patients and a lack of awareness regarding early diagnosis of dementia. In an eﬀort to change medical student perceptions while providing a meaningful role for persons with dementia, the Northwestern University Cognitive Neurology and Alzheimer's Disease Center (CNADC) developed The Buddy Program, an experiential learning and mentorship program for persons with dementia and ﬁrst year medical students.

● Educate medical students about Alzheimer’s by increasing their knowledge base, heightening their awareness of skills and strengths that remain in persons with Alzheimer's and familiarizing them with care/support issues and eﬀective communication skills. ● Introduce students to research and practice opportunities in ﬁelds related to aging and dementia. ● Provide persons living with dementia an opportunity to serve as a mentor to a future doctor.

The Buddy Program is rooted in the value and belief that persons with early stage dementia have the continued capacity to make meaningful contributions to society and others. The person with dementia receives companionship, social interaction, and the opportunity to mentor the student, while the student has an opportunity to have their image of persons with dementia shifted and transformed through this mutual relationship. The program originated as a result of a

Since 1997, the Buddy Program has paired 167 students and persons with dementia. The ‘buddies’ plan an academic year of regular meetings (four hours a month) around mutually satisfying activities, such as visiting museums, attending concerts, sharing a meal or simply going for a walk. The students write a journal entry of their buddy visit following each activity.

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Resulting journal themes have included: students’ expressions of a heightened sensitivity and empathy toward persons with Alzheimer's; a change in their preconceptions of dementia; and a growing awareness of how their communication impacts the person with dementia and their relationship. For example, one student wrote, “My interactions with my mentor and his wife aﬀorded me my ﬁrst opportunity to talk about the disease to someone who has it. I realize that I need to be much more conscious of the things I say about the disease and how they may make my mentor feel. This skill of putting myself in my patient’s place and trying to understand things from his or her perspective is something that I will continue to work on because I feel it will make me a more empathic physician.”

moving a bit faster or trying to determine where her thoughts were going before she’d finished speaking, as if to move the walk or the conversation along at a speed closer to my own. But I soon realized that there was really no reason to do such things, and moreover, that in doing them, I was robbing us of a great benefit of our relationship.” Students explained how they saw their buddy as a mentor through their expressions of all they learned from them and how they will apply what they’ve learned in their practice. One student stated, “My mentor has been an inspiration on how one should always view the good and positives in life…the buddy program has allowed me to gain a unique perspective and see a person, beyond a diagnosis or disease.” And another explained, “My mentor has primary progressive aphasia, but he is not defined by his diagnosis. He is a husband, a father, a grandfather, a teacher and an art aficionado. If you ignore these aspects of the patient you are doing both the patient and yourself a disservice…I will avoid making assumptions about how the diagnosis will affect a patient’s life. I will let the patient tell me how they view their illness and how it impacts their life.”

There was evidence of an increasing comfort over time as the friendship between student and mentor grew. For example, this student reflected, “The most important thing that I took from my time with my mentor was the idea that there is a benefit to slowing down the pace of one’s life from time to time. My mentor walked slowly, she spoke slowly. Our conversations certainly moved slowly; often, we would have the same discussion several times in one visit. And I began to adjust to her pace. I would like to say that I never minded this deliberate approach, and I was certainly never upset by it, but at times near the outset I would find myself

Through the buddy program, ﬁrst-year medical students have been exposed to the human side of medicine in addition to the science behind dementia. The program has given them an opportunity

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to interact with a patient outside of the clinical setting. It has provided for the diagnosed person, the opportunity to teach medical students the importance of seeing a “patient” as a human being, and not as a disease.

Alzheimer’s, one man deﬁned it for himself and said, “Somehow, you’re pushed so far, but you manage to come back – you compensate, withstand, and you bounce back.” A peer responded and said, “You try to analyze what happened and make plans to make changes and move on – it’s adjusting as necessary.”

The Buddy Program has been replicated at Boston, Dartmouth, and Washington Universities. This fall, the University of Kansas and Albany Medical College launch their programs with plans for the University of Wisconsin-Madison to begin in 2014. The Buddy Program is sustained in part by a grant from the Glen and Wendy Miller Family Foundation.

Others talked about what helps to promote resilience. “You need to be assertive and let people know what you think,” states one man. Another participant adds, “Humor is essential. It would be hard to face the future knowing what you know if you didn’t have a sense of humor.”

Volume 19, Number 2: Winter, 2014

In their recommendations of helpful steps towards building resilience, the American Psychological Association points to the importance of making connections with others and developing strategies for constructive and positive attitudes. Individuals with Alzheimer’s aﬃrm these recommendations. One woman speaks to the value of attending her support group and the strength she gets from being with her peers: “If you don’t feel resilient in some way, you give up and you don’t want to do that. So that’s why we’re here.” And in their publication entitled “Don’t Make the Journey Alone”, Scottish authors diagnosed with a dementia write: “The best person to help you cope with your new life is yourself. It is your attitude that is going to be really important.”

Reﬂections on Being Resilient So often when we hear about Alzheimer’s or a related disorder, the news is grim. We learn about the rising number of people with dementia, failed clinical trials, or the signiﬁcant stress that families can experience. What is less recognized, however, is the inspiring resilience that individuals with dementia can demonstrate even in light of this challenging condition. But what does “resilience” mean and how can the experience of resiliency be achieved? When discussing the topic of resilience during a recent support group for participants with early-stage

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half of having smarts is knowing what you’re dumb at. Don’t beat your head against the wall.”

Positive attitudes and coping strategies are acquired and developed throughout life. Some coping strategies may be familiar methods that you have used at other challenging times in life, while others may be new coping skills that you are developing to deal with memory loss and other symptoms. It’s never too late to learn helpful coping strategies. The following suggestions are reprinted here from the book Living Your Best with Early-Stage Alzheimer’s by Lisa Snyder (Sunrise River Press) and are summarized from feedback from many diﬀerent people with Alzheimer’s who have advised on ways to be resilient and cope eﬀectively.

Focus on your remaining strengths. One man says, “Look, Alzheimer’s is only part of what I am not all of who I am.” You have many remaining abilities and positive qualities. Acknowledge them and make the most of them. Don’t give up on life. Francoise states, “I am not giving up. There are other things besides having Alzheimer’s.” Think positive.

Staying busy can be a helpful way of coping with a variety of feelings. One woman says, “I don’t think about Alzheimer’s! I have lots of other wonderful things to think about children, grandchildren, reading, walking, eating, and chocolate!” Another man agrees with this approach and says, “When my mind is on something else, I can’t think of myself, so I stay busy.”

New Zealander Brian McNaughton writes, “If we passively shut up shop in the early stages of our disease and just concentrate on what a horrible card fate has dealt us, then we deserve to be miserable and should be ashamed of making the lives of those who love us so stressful. Instead, look for those opportunities to stray from the beaten path. Leave your dark rooms and open your hearts if you have trouble opening your minds. Hard at ﬁrst I must admit, but easier the harder you try.”

Learn to let go.

Give and receive support.

There may be times when you struggle to do something or make something go your way and it just isn’t going to happen. Try to stop the battle and take a break. Joe laughs when he says, “Look,

People with Alzheimer’s support one another through participating in groups, social programs, email chat rooms, or other activities. The opportunity to

Get your mind oﬀ of Alzheimer’s.

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share with others who understand can ease many challenging feelings. Glen says, “You can always talk with your friends. We help each other out. We’d all be the ﬁrst to help each other.”

take the changes and behaviors seriously and at the same time be able to have a sense of humor about them…We want to remain believing that we are, at any time in our relationship and decision making, doing the best we can with what we have.”

Learn to accept that you have Alzheimer’s. Retired physician Dr. Donald Rhodes reﬂects on his process of coming to terms with his diagnosis stating: “There’s the intellectual acceptance part, and the emotional acceptance part, and you fuse them together for wanting to survive…With this, if you want to survive and continue, you have to accept. Then try and make realistic plans and accommodations for your life.”

As you think about the topic of resilience, consider discussing these questions with others: What does resilience mean to you? In what ways are you being resilient or adapting, as needed? What helps you to feel resilient? Article references: Living Your Best with Early-Stage Alzheimer’s http://www.amazon.com/Living-YourBest-Early-Stage-Alzheimers/dp/19347 16030

In a 2002 article that he wrote for Perspectives newsletter entitled “The Alzheimer’s Survivor”, Thaddeus Raushi embodies concepts of resiliency with his wise perspective: “I’d like to suggest that there are Alzheimer’s survivors. For me, surviving is both attitude and action. It means that even while knowing that I have this disease, I can still go on with life always doing the best I can with what I have at any given point. This is the attitude of seeing life worth living. This is also the action of moving ahead with doing whatever is quality living at that moment…As my wife and I move forward together, we want to be able to know when to deal with the disease’s issues and when to put them on the shelf. We want to both

The Road to Resilience http://www.apa.org/helpcenter/road-r esilience.aspx Don’t Make the Journey Alone http://www.alzscot.org/. Click onto Information and Resources and ﬁnd the section Living with Dementia. Scroll down to ﬁnd title.

Questions and Answers Q. I heard in the news about a new blood test that can predict if you will get Alzheimer’s. My kids worry about getting Alzheimer’s. Should they be tested?

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Mindful and Spiritual Living with Alzheimer’s

A. In recent years, researchers have been investigating ways to detect early changes in the brain through “biomarkers” such as blood, cerebral spinal ﬂuid (obtained by a lumbar puncture), or brain imaging (using PET scans or MRI). These biomarkers may capture Alzheimer’s disease (AD) changes many years before any noticeable outward symptoms are evident. If these earliest changes can be detected, then ideally, persons at risk for developing AD could start a treatment or other intervention early on in an attempt to prevent or postpone disease onset. However, there is currently no treatment available to prevent AD.

By Lou A. Bordisso, Ed.D Many years ago, I journeyed from Sacramento, California to Milwaukee, Wisconsin to begin a year as a Novice with a Roman Catholic order. In the middle of my cross-country journey, I stopped in Nebraska at a monastery for a mini retreat and rest from the long drive. During my short retreat, I was assigned a senior monk as my “mentor” who helped me to get through the complicated morning and evening prayers, songs, and ﬂipping back and forth through the pages of monastic rituals. I was honored to have him give me a guided tour of the monastic grounds as well.

Recently researchers at Georgetown University in Washington DC and University of Rochester in New York found low levels of certain lipid fats in the blood that were 90% accurate in predicting in a small group of seniors those who would go on to develop AD within two-to-three years. Researchers caution that this ﬁnding must be replicated in much larger numbers and in diverse populations in order for it to be valid. They also caution against anyone seeking a blood test at this time due to lack of treatment. Thinking that one is likely to develop AD may have negative consequences. The bottom line: Worried oﬀspring should not pursue this blood test and much more research is needed.

The monk, as I recall, was quite elderly and disﬁgured with his shoulders slumped forward as he walked with his cane. He looked like he was in a considerable amount of pain as he attempted to move about. Even with his body failing him, I could not help but to notice a glow on his face and a sense of gentle compassion in his voice and gestures. I recall being in awe of him. Even when we were not engaged in conversation he appeared to have a manifestation of something sacred or a divine presence. At the same time, there was no explicit talk about God or a Higher Power, or anything spiritual. St. Francis once said, “Preach often, but use few words.” Even though this monk

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was a Benedictine and not a Franciscan, he embodied the spiritual wisdom of St. Francis in his very being. I came to know and respect his patience, prayerfulness, and sage-like wisdom. Living with Alzheimer’s or a related dementia can be daunting on a daily basis. As many of us know, there are good days and not-so-good days. I often liken my “not-so-good” days as a desert experience of dryness and thirst for my life to be more than it is in the moment. However, I then reﬂect on my experience with my elderly monk-mentor with his physical pain and brokenness. In the midst of his pain and brokenness, he was able to become a manifestation of peace, joy, and hope. He modeled for me a way for me not to get rid of my pain and suﬀering, but a way to live through it. Through years of introspection, contemplation, and meditation, he came to encounter a sense of the sacred or divine within himself, which sustained him during moments of daily strife.

Lou is an active public speaker and educator about living with dementia. I may never come to embody what my monk-mentor has discovered on his journey. However, when Alzheimer’s becomes overly “dispiriting”, what I can do is reflect back to his example and look deep within, be honest with myself, and identify what may be “disfigured” and seek to “transfigure” my attitudes, actions, and physical/emotional sufferings by finding a “quiet place” within – even if it is just for a moment or two – in order to quench my thirst in the midst of my desert experience. Editor’s note: Lou Bordisso resides in northern California. In December 2013, he received a “Threads of Hope” award from his community for his courageous and inspiring perspectives on living with Alzheimer’s. He has recently started writing a blog that can be viewed at: http://alzreflection.blog.com/.

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Living Well with Alzheimer’s Our Perspective

We have learned that a diagnosis of Alzheimer’s does not represent the end to all that is good in life. Staﬀ members focus on the positive strengths of each person, celebrating their successes and achievements. The results are amazing to observe. Who does not thrive with the rewards of recognition and validation?

By Ken and Mary Margaret Lehmann Recently, we watched a PBS documentary about a program for persons with dementia in California. The conclusion suggested that for many people in the program, there was a much slower rate in the progression of the disease than expected. We looked at each other and immediately agreed that our experience in the Living Well Program in Minnesota has had the same results for many of its participants.

The program, depending on the focus of the day, includes a myriad of activities such as: painting, clay, movement/dance, writing, poetry, learning about other cultures, learning local transportation options, discussions on a variety of topics, ﬁeld trips to museums, restaurants, and also, question/answer information sessions with Dr. Michael Rosenbloom, MD, Neurologist, and Dr. Terry Barclay, PhD, Neuropsychologist. Each session begins with 30 minutes of Ageless Grace™ exercises. The smiles turn to laughter as the creaks and cracks in our bodies transition to smooth, uninterrupted movements so important for the brain and heart.

Living Well: A Holistic Program for People with Early Memory Loss is sponsored by the Minnesota/North Dakota chapter of the Alzheimer’s Association, the Amherst H. Wilder Foundation, and the St. Paul Jewish Community Center (JCC). It is a twelve-week program, which offers participants learning opportunities to live well each day with good nutrition, exercise, cognitive challenges, socialization, and creative arts. The outstanding staff, led by Susan Ryan, an occupational therapist from the Wilder Foundation, is welcoming, caring, and inclusive with all their smiles, hugs, and laughter. There is no judgment and ACCEPTANCE is the by-word. The program and staff have sustained and supported us and as a result, we are thriving in the face of Alzheimer’s.

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social worker. I began Living Well’s Caregiver Café “at high risk of distress.” I tested at “mild to no risk” twelve weeks later and have maintained that status for the last year. For more information about the Living Well program, please contact Susan Ryan at: susan.ryan@wilder.org.

Helpful Resources Counseling People with Early-Stage Alzheimer’s Disease – A Powerful Process of Transformation Robyn Yale, LCSW has long been a pioneer in helping people with early-stage memory loss to have a voice. Her ﬁrst book Developing Support Groups for Individuals with Early-Stage Alzheimer’s Disease raised awareness to lay the groundwork for those working to develop discussion forums and support programs for people with early memory loss. Many people with Alzheimer’s around the world now speak to the value of being able to participate in a support group and the healing that comes from feeling that you are not alone.

As a person with Alzheimer’s, I, Ken, always return home energized, enthusiastic about life, and smiling. What I like best about Living Well is the socialization. I have “best friends” and this is very new for me. For years before my diagnosis, I withdrew from social situations and friends. I became more and more isolated. Socialization is essential for persons with Alzheimer’s. And I, Mary Margaret, the care partner, could not be more grateful. Living Well also embraces a Caregiver Café just down the hall. Here, education of the disease, as well as discussions in the areas of health and wellness, relationships, sense of self, and managing stress, are oﬀered. It is led by Jen Finstad, an incredibly knowledgeable, supportive, Wilder

In her new book, recently published by Health Professions Press, Yale creates a model for counseling persons with early-stage dementia that also provides a hopeful framework for living with dementia. The counseling approach was implemented in collaboration with the

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Atlanta, Georgia Chapter of the Alzheimer’s Association and evaluated by the Georgia Health Policy Center. With so many people being diagnosed earlier in the course of Alzheimer’s, working with a skilled counselor can be life-changing. As one person who participated in the counseling program stated: "You get your diagnosis and a prescription, and the doctor says to come back in six months. So you're left thinking, 'Now what?' It's a very scary feeling. The counseling has been tremendously helpful, informative, and reassuring to me, and I hope it will become available to more people in my situation."

Alzheimer’s Association "I Have Alzheimer's" Website

The Alzheimer’s Association recently created I Have Alzheimer’s — a new section on their website to provide useful information and advice to people with early-stage Alzheimer’s or a related disorder. I Have Alzheimer’s was created with input from individuals living with Alzheimer’s. The website content helps answers many questions including: •How do others respond to the diagnosis?

But the process may not only be remarkable for the person with memory loss. Counselors who participated in implementing the model also speak to the “powerful transformation” that Yale discusses. As one counselor said, "Counseling one of our participants was one of the most profoundly moving experiences of my professional life; I felt privileged to witness her capacity for accepting her Alzheimer's and continuing to live her life with joy. To just be with her while she panicked, surrendered, and then found her way back..."

•How does Alzheimer’s progress? •How should I plan for my future? •How do I live day-to-day? The website oﬀers information and advice directed to people with Alzheimer’s but can be helpful to families, friends, and professionals, as well. You can explore content on the I Have Alzheimer’s website at:

For more information about Counseling People with Early-Stage Alzheimer’s Disease or to order a copy, see: http://www.healthpropress.com/store /yale-70071/index.html

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https://www.alz.org/i-have-alz/i-have -alzheimers-dementia.asp

about the clinical trial and it’s 65 enrollment locations across the US at: http://www.clinicaltrials.gov/ . Put AC-1204 in the website’s Search for Studies box.

RESEARCH UPDATES New Series of 2014 Clinical Trials

SNIFF: The Study of Nasal Insulin to Fight

In the past decade, there have been a series of disappointing clinical trials in which hopeful treatments have not proven beneﬁcial. Researchers remain determined, however, to make headway in more eﬀectively treating mild cognitive impairment (MCI) and Alzheimer’s disease (AD). The following are two hopeful clinical trials that will be enrolling participants throughout the US in 2014:

Forgetfulness Growing evidence has shown that insulin, a naturally occurring hormone, has many purposes in the brain. Abnormal insulin levels, or fluctuations in levels, may contribute to the development of Alzheimer's disease. This study will examine the benefits of nasally administered (sniffed) insulin on thinking abilities in people with mild cognitive impairment (MCI) or mild Alzheimer's. Individuals with diabetes or those with a history of insulin use are excluded from this trial. This trial is enrolling at 29 sites across the US. For more information, contact Jeffree Itrich at jitrich@ucsd.edu or 858-246-1317. Read more about the clinical trial at: http://www.clinicaltrials.gov/. Put SNIFF, Alzheimer’s in the website’s Search for Studies box

NOURISH ADProviding Energy to the Brain There are many supplements on the market that aim to boost brain power, but rarely are these supplements evaluated through rigorous or unbiased clinical trials where they are compared to a placebo. This study will test a powdered drink (AC-1204) that has been scientiﬁcally formulated to increase ketone bodies in the blood. Ketones are a naturally occurring energy source for the brain. Researchers hope the treatment can improve thinking, functioning, and quality of life in study participants with mild-to-moderate Alzheimer’s. Contact Janet Vogel at 303-999-3703 or jvogel@accerapharma.com. Read more

New 2012-2013 Alzheimer’s Disease Progress Report: Seeking the Earliest Interventions The latest edition of the annual Alzheimer’s Disease Progress Report from the National Institute on Aging (NIA) at the National Institutes of Health (NIH) is now available online. Each year, this excellent report

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highlights recent progress in NIH-supported Alzheimer’s disease (AD) research. Contents include: discussion of the National Plan to Address Alzheimer’s Disease; biology and bio-markers of AD; genetics; risk factors; advances in detecting AD; potential new therapies to treat, delay, or prevent AD; caregiving; and gender and racial diﬀerences in the impact of Alzheimer’s.

long time for me to admit there was a problem. I had my driver’s license taken away from me and that was a major thing. I'm not really sure that anyone understood the severity of that for me. I had always had a pickup truck, and I loved to drive. I didn't realize how it would aﬀect me and I couldn't accept it. I realized that I had a problem when I kept asking Sandy the same things over and over and I couldn't seem to stop. I had come to terms with this problem, but it was hard. I am a little hard headed and a little bit set in my ways. I am seventy-ﬁve years old and it comes with the territory, but it's not an excuse. If Alzheimer’s progresses very slowly, sometimes it’s hard to realize what is going on.

Other features include a video introduction by NIA Director Dr. Richard Hodes, a primer on Alzheimer’s disease and the brain, tables listing NIA-funded clinical trials, and videos that further explain critical areas of study. Read this comprehensive report online at: http://www.nia.nih.gov/alzheimers. Click onto Publications for many NIA resources.

It's hard to understand how I can remember things from childhood, but I can't remember what I did yesterday, or an hour ago. It is hard to understand the disease. But I have ﬁnally come to terms with the Alzheimer’s and have learned to live with it. It doesn't seem right to me, having someone else drive me around everywhere I go. I ﬁnd myself saying, “A man should be born with a pickup truck and a driver’s license!” Wouldn't that be amazing and impossible? But I guess having a driver’s license is a privilege not a right.

Volume 19, Number 3: Spring, 2014 Thoughts On Having Alzheimer’s By David Partridge I was diagnosed with Alzheimer’s about ten years ago. It progressed very slowly, and that was frustrating for both me and my wife Sandy because it took a

I have been exercising my brain by doing word puzzles such as crosswords and word ﬁll-ins which helps a lot. I

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have been writing short stories about my life while growing up. This has become an obsession for me. It seems like there is a myriad of stories in my head, mind you most of it is for my own enjoyment. I have published two of them in a small magazine published four times a year. It isn't a real big deal, but it was exciting to me. I ﬁnd that I am better oﬀ keeping my mind active and alert. I am pleased that it is working for me. If you don't use it, you lose it (your brain).

down and lay down. Believe it or not it is really bad for you. One night I found myself in an emergency room with a DVT or deep vain thrombosis (blood clot) which moved into both lungs. I wound up with a six-week stay in the hospital and a Greenfield filter in my leg that went to my lungs. I take a blood thinner to try to keep clots out of my lungs and my brain. Pretty clever isn't it? I also had a pacemaker installed because of a slow pulse. I love my life and I know that things will happen to my health. Of course that is to be expected. I'm not twenty-five any more, but I'm still here. I have a wife who loves me, God only knows why. She takes care of me and keeps me out of trouble. I don't stay alone much anymore. Of course she takes me to all my doctors’ appointments, much to my chagrin. It just doesn't seem right sometimes. Life goes on and time goes by, and that’s the way it is. This is a fact I have to accept, as hard as it may be for me. I also belong to a small church where I know everybody. I have a hard time getting around because of my lack of balance, but that's not a big deal. I thank God every day for the life I have. Christ is a very big part of my life, actually the biggest motivating factor. I play the harmonica in the church services.

I can't work anymore, at least to earn money. I work making birdhouses and bird feeders. I also make little things, like window boxes and shelves, and I feel better for it. I would advise everyone to stay active. When I ﬁrst moved to Kansas, I sat

My life feels fulﬁlled, even though I still deal with the condition of Alzheimer’s. I

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realize that with the condition the only remembrance that is lost is the shortterm memory. I actually remember things that happened when I was as young as two years old. That seems weird, but that is the way that it is.

sense of connection and purpose. The following is something I wrote on resilience which was sparked by your Winter, 2014 issue and the comments of

members of our telephone support group.

Outside The Box By Lon Cole

Richard Apple, MSW, LCSW Alzheimer’s Association Greater Illinois Chapter

Think outside the box When living life each day Nothing has to be normal Or happen in a certain way

RESILIENCE Every day’s a new day There is so much to share Whatever gives you happiness Decides for you what’s fair

Resilience is crucial to live a life of joy with Alzheimer’s or other dementias. Yet it is diﬀerent for each person and family. How can we recognize what gives us resilience and purposefully strengthen it?

No one needs to control you Don't let your self feel low Walk into the sunlight Watch your spirit grow

Pillars of Resilience

When is seems to conquer you Know you still can win Stand up when you start to fall And ﬁght it to the end.

• Social connections • Actions with purpose

Lon Cole was diagnosed with Alzheimer’s six years ago at age 61. He resides with his family in Puyallup, Washington. He is the author of “You Are Not Alone - Poems of Hope and Faith.”

• Attitude toward self and others • Sense of hope and perseverance in the face of diﬃculty

MAILBOX

• Ability to focus on the moment

Hello Lisa, I facilitate a telephone support group for individuals with early memory loss. They enjoy the information in Perspectives. The ideas from others outside the group help give them a

• Belief that there is still joy amidst the sadness • Recognize losses but use strengths

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Ideas to Foster Resilience • Embrace humor - learn to laugh at the follies of the illness (diﬃcult at the time but afterward is key to coping with the pain). • Be assertive - let people know what you think even if you don’t always express it clearly.

experience - if I choose not to withdraw out of sadness or embarrassment).

• Build connections by supporting others in similar situations, educating others about the disease, advocating for changes (local or worldwide, small or large), and contributing resources (money, time, talents) to a cause.

• Learn to be mindful of moments of joy and foster an attitude that life is worth living.

• Learn to accept the disease but don’t let it become you. • Keep ﬂexible plans as you head out on the journey.

• Believe that I am doing the best I can with what I have, yet always looking for new ideas from others.

• Learn about the disease and ways to cope- positive books such as Living Your Best with Early-Stage Alzheimer’s by Lisa Snyder.

HELPFUL RESOURCES Young onset dementia (also known as early-onset dementia) describes a dementia diagnosis given to someone at an age between 30-65. It is estimated that up to 10% of people living with a form of dementia are young onset. These individuals can have unique challenges with ﬁnding age-related peer support, trying to raise children who are still at home, managing symptoms in the work place, and other concerns related to the onset of a disability in one’s younger years.

• Don’t try to make the journey alone. • Purposely engage in activities that give you joy and take your mind oﬀ of worries. • Get support so you can continue to do things that give you joy even if you can no longer do them alone or perfectly (for example - can’t prepare a meal alone but participate and do what you can as part of a team).

YoungDementiaUK is a national source of information and support for people with young onset dementia in the UK. Although some of the very helpful and detailed information on the website discusses speciﬁc events in the UK, much of the information and

• Mentor others and get help building a team of supporters (for example, I can’t run fast anymore but I can encourage and teach others from

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testimonials can be of help to people living anywhere else in the world, too. The website is created “with and for younger people, families, friends, and supporters” and is managed by a team of Trustees and Staﬀ who are primarily healthcare professionals and dementia specialists. In 2012, YoungDementiaUK received the European Foundations’ Initiative on Dementia award which aims to improve perceptions of dementia and achieve a better quality of life for people with dementia and their families.

Dementia Alliance International (DAI) is a new organization comprised of people with dementia from the USA, Canada, Australia and other countries who seek to represent, support, and educate others living with the condition. The organization’s membership is open only to people with a dementia diagnosis of any type. DAI members aim to provide a uniﬁed voice of strength, advocacy, and support in their eﬀorts towards autonomy and improved quality of life. Their compelling vision is: “A world where a person with dementia continues to be fully valued.”

YoungDementiaUK is hosting an exciting upcoming conference: A Life Worth Living: Young Onset Dementia Services and Support September 30, 2014

DAI has an excellent website that provides a full range of interesting opportunities for connecting with others via the “Services” tab on the website home page. Under the “Blog” tab, there are many interesting commentaries including the most recent one from current DAI editor, Kate Swaﬀer, in which she outlines both the challenges and the considerable accomplishments of this developing organization. To learn more about this inspiring organization’s work, see: http://www.dementiaallianceinternatio nal.org/

St Hugh’s College in Oxford, England

For more information and to review the website see: http://www.youngdementiauk.org

Dementia Alliance International Over the past decade, it has been powerful and inspiring to see the growing number of people with dementia around the world who are raising their voices and eﬀorts to increase public awareness, support one another, advocate for their needs, and educate others about the experience of living with dementia.

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“The person can’t be bossy. I’m hiring this person so the caregiver should ask what I want to do rather than telling me what we’re going to do.”

Brainstorming Thoughts on Hiring a Caregiver or Helper Editor’s note: It is not uncommon to learn from people with early-stage dementia that they have concerns about the future and what will happen if they need more assistance in managing their daily life or personal care. Many have family support, but others do not and need to hire someone for assistance. And even with family support, paid caregivers are often added to the team just to provide extra assistance to you or your loved ones.

“It’s important that a caregiver is patient. If they are uptight, then they are going to get anxious when you do something wrong. They need to be even-tempered.” “Make a list of what qualities you might want to have in a hired assistant. I like to think of this individual as my “personal assistant”, not a caregiver.”

The following comments come from participants in a weekly early-stage support group at the University of California, San Diego’s Shiley-Marcos Alzheimer’s Disease Research Center during a discussion on hiring “caregivers.” These comments below are not provided in any particular order, and each one oﬀers food for thought and discussion on this important topic.

“Have a list of what you expect from anyone you hire. I don’t want them to just sit and watch TV.” “Make sure you’re part of the interview process so you can see if this person might be a good match for you.” “It might take going through a few people to ﬁnd the right match, but that doesn’t mean you should give up.”

“My family needs to give me a chance to get comfortable with the idea of a new person in my life and not just have this caregiver show up suddenly. I hope we can talk about it in advance, but I know sometimes I forget conversations!” “I don’t like the idea of a baby sitter. I’m not a child. But I can see that having a paid caregiver, if needed, is sort of a security blanket – could be comforting and helpful if it’s the right person.”

“Good communication is so important. Make sure this is a person you can talk to and who listens to you. Sometimes caregivers stop listening to you or think your opinion doesn’t really count anymore. They need to take a deep breath and reevaluate. How would they feel if they were in my shoes?” “Both of you need to have your own space and privacy if the caregiver lives

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with you. That’s really important or you’ll get on each other’s nerves.”

Alcohol consumption can increase risk for dehydration so limit alcoholic beverages.

“A good helper is ﬂexible and is not too controlling.”

Each morning, ﬁll a quart-sized water bottle with water or fruit juice. Drink from it throughout the day. If you have forgotten whether you have had enough ﬂuids at the end of the day, check the bottle. If it’s empty, that’s a good sign. If it’s still full, drink up!

“Think of activities for you and your caregiver to do together. We have a list of 12 things I like to do and places I like to go. That way when someone spends time with me, they aren’t trying to ﬁgure out what to do with me!”

Avoid going outside in the hottest part of the day. If you do, take water with you and drink ﬂuids during your outing.

The Dangers of Dehydration Summer months can be dangerously warm in many regions of the world. Heat paired with risk of high humidity can place a person at serious risk for dehydration. Dehydration can increase confusion, disorientation, and memory problems in individuals with Alzheimer’s or a related disorder. Due to memory loss, some people forget to drink enough ﬂuids. Others have lost some of the sensation of thirst and are not aware when their body is signaling the need for liquids. Taste can also be diminished due to Alzheimer’s, so some people are less motivated to eat or drink. The following are suggestions to reduce risk of dehydration and increased confusion:

Eat plenty of fresh fruits and vegetables. Limit coffee, black tea, or colas. These beverages are diuretics (substances that lead to increased urination). If you do drink them, also have a glass of water to offset the risk of fluid loss.

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amounts of alcohol can aﬀect concentration, memory, speech, problem solving, and judgment, as well as physical abilities including coordination and balance. Alcohol can also aﬀect mood, worsen symptoms of depression, and contrary to popular belief, contribute to insomnia.

to Address Alzheimer’s Disease; updates on understanding of the biology of AD; genetics; risk factors; advances in detecting AD; potential new therapies in treatment and prevention; caregiving; and socioeconomic, racial, and gender diﬀerences in the impact of AD. The report also provides a detailed chart of ongoing clinical trials that address all stages of AD, as well as prevention and quality of life.

A physician’s recommendation about alcohol consumption may vary from person-to-person depending on each person’s history of alcohol use, symptoms of Alzheimer’s, the impact of alcohol on these symptoms, and the possible side-eﬀects of alcohol on current medicines. Alcohol can have a negative or dangerous impact on certain medicines you may be taking so if your physician recommends abstaining from alcohol, consider switching to nonalcoholic beers and wines which are available in most supermarkets.

In keeping with the last year’s report, this updated one also provides an informative video discussion with Dr. Richard Hodes, the Director of the National Institute on Aging, who speaks to the worldwide eﬀort to advance understanding, treatment, and prevention of AD.

RESEARCH UPDATES

Read this 2014-2014 report online at: http://www.nia.nih.gov/alzheimers/p ublication/2013-2014-alzheimers-diseas e- progress-report.

In the last issue of Perspectives we reported on the availability of the 20122013 Alzheimer’s Disease Progress Report from the National Institute on Aging. Now the newest 2013-2014 report has just been made available to read online. Each year, this comprehensive report highlights recent progress in federally supported Alzheimer’s disease (AD) research. Contents of this most recent report fall into similar categories as the last year’s but provide updated information including: progress in the National Plan

It is known that for many people, the removal of cataracts can improve vision and reduce risk of accidents and falls. However, some individuals, caregivers, and doctors are reluctant to proceed with cataract surgery once a person has Alzheimer's disease (AD) because they don’t think the surgery will improve the person's quality of life or thinking abilities. Some fear that cataract surgery with its associated anesthesia will create complications or worsen the dementia.

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would say the pain of not being able to remember is gone now, but also some of the experience of excessive joy that some memories bring. It’s like getting older– you have that a lot. Things aren’t as intense. Everything is muted down – your eyesight, your hearing. We lose the intensity as we get older. I always loved intensity, so at ﬁrst when this memory loss started happening, I felt things were sort of blah. But I’ve gotten used to it and it’s a refreshing way to live to not be so aﬀected by things and not to need that intensity. You want to look at it as a blessing, not a lack. One of the lessons of age is to allow things to be the way they are and not always try to change that. You don’t get as agitated by things, and I used to sort of enjoy being agitated by something. It was like a kick in the seat of the pants. It was that feeling that I was really alive.

A team of researchers from Case Western Reserve University conducted a study to investigate whether cataract removal in individuals with AD could improve vision, independent functioning, and quality of life. The study included 20 people with dementia who underwent cataract surgery and a control group of 14 people with dementia and cataracts who did not have the surgery. Preliminary results showed that six months later, those who had surgery had reduced decline in some important thinking abilities and improvements in behavioral measures compared with the non-surgical group. Caregivers reported reduced burden as they observed positive changes in their loved one. Researchers suggest that good vision is related to better memory and functioning in persons with AD. They caution that further study is required to conﬁrm this ﬁnding. In the meantime, however, it could be helpful to consult with your physician and to have your vision evaluated so that it is as clear or as well-corrected as possible.

Volume 19, Number 4: Summer, 2014 Living with My Muted Memory By Jennifer Snyder

Jennifer Snyder with daughter, Lisa

I don’t think I’ve ever had a sharp memory but it’s even less so now. I

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I was mad at ﬁrst about my memory loss because I couldn’t remember something – the details of things. I fought against it. I’d say to myself, “Come on – what’s the matter with you!” But now there is less that I have to remember. It would be very frustrating if I did have a lot I had to remember. I have fewer responsibilities now. There is nothing I really have to do. It’s a diﬀerent way of living. If I had to remember appointments or remind people of things, it would be hard. I can remember to make sure that my cat has cat food and to take the garbage out, but that’s about all I have to do.

you feel weak to have to receive all of the time. But it’s important to be gracious in the receiving. It’s been a process. I’m very fortunate that I have enough family who remind me that I am worth something. And my purpose can be to go to the grocery store and smile at people. How important these things are. It’s a way of graciously slipping into life. I think the knowledge that you really have a new memory every moment is important and I focus on that rather than the old ones. I don’t remember pain that much. I remember beauty, places I’ve been, family, joy. I don’t know how to tell people to have a diﬀerent attitude if you’ve always been pessimistic and think you have to look at the world that way. I’ve always looked at the world from a positive point of view. It’s more enjoyable that way. If something bad is going to happen, it’s going to happen. I’ve never lived thinking about the future and that hasn’t always been practical, but I like living in the now.

I’ve been very fortunate in all of this. Instead of finding experiences to be really negative, I just find them interesting. If I was the way I am now and didn’t have anyone caring for me, it would really be a struggle. My feeling is that for some people, their pride says I can’t accept help from you. But if you realize you’re denying the other person something by not accepting, it can hurt the other person if you don’t let them help. They may get some joy or satisfaction out of helping. But never assume someone is going to enjoy it either. In some ways it’s very fulfilling to help someone else and it can be harder to accept the help. Our ego likes the thought of “I’m fine on my own– I don’t need any help.” But relationships are two part– the giving and the receiving and you want to be able to do both. If you’re just receiving, it makes

If you can look at your life as a story, then you can ﬁnd it more interesting and memory loss just becomes part of the story. It doesn’t mean that you aren’t in pain sometimes about the memory loss, but you can step back a bit and just observe it all and try to accept it.

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It’s what you do remember that’s interesting. It’s like eating the icing on the top of the cake and not having to worry about the whole cake. You have a choice and you get the sweet tidbits. You could always pick out the bad tidbits. I’m not blind to them; I just focus on the good. The more you focus on the good, the more the good comes. The more grateful you are, the more you have to be grateful for. But that’s my philosophy. It’s whatever works for you.

now because they have interesting scenery and information without a complicated plot to keep track of. I liked ‘March of the Penguins’ and ‘Winged Migration’ because they had amazing bird footage. We also like watching Rick Steve’s travel shows on public television.” “I prefer to rent movies and play them at home because then we can stop them part way through if I’m lost or need to be reminded of the plot or a character. My wife is amazingly patient with the occasional pauses and it helps me stay on track.”

Editor’s note: Jennifer has four children, eight grandchildren, and six great-grandchildren. She lives with her beloved cat, Charley, on the island of Maui. She enjoys painting (see her Hibiscus painting above), reading, and time with family who live nearby or come to visit from the mainland.

“I like musicals because I can always enjoy the singing and dancing even if I can’t keep track of who is doing it! You don’t ﬁnd that many contemporary musicals, but there are some great oldies you can rent. ‘Mama Mia’ is newer, but I love watching ‘Oklahoma’ or ‘South Paciﬁc.’ Some of those classics never get too old.”

Questions and Answers Q. I used to love going to the movies but I have a hard time keeping track of plots now. I don’t want to give up on watching them or going to theatres, but I don’t like the frustration. Do you have any ideas on how I can continue to enjoy movies?

“You can go on the TV to the Turner Classic Movie channel. There are some great old movies and I think the plots were simpler back then. I also remember those actors and actresses from the past, so it’s easier to follow them. And it doesn’t hurt that I’ve seen so many of these movies a lot of times. Eventually I remember them pretty well!”

A. We asked people with memory loss to oﬀer some suggestions and here are the very helpful replies:

“If you can ﬁnd a movie that focuses on just one or two main characters, it’s a lot easier. I really liked ‘The King’s Speech’

“I watch more National Geographic or travel types of movies or documentaries

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because it was one man’s story of overcoming a disability. There are lots of other good biography movies. Some movies have too many characters who all start looking alike and get mixed up with one another until it’s a confusing mess.”

That’s my motto for managing memory loss in general.”

The Benefits of Meditation Understanding the Practice of “Mindfulness” Over the past two decades, there has been rapidly growing media, medical, and scholarly attention given to the science and practice of “mindfulness.” Jon Kabat-Zinn, PhD, a professor and founding Executive Director of the Center for Mindfulness at the University of Massachusetts Medical School, is widely recognized for his work in the field and defines mindfulness as “paying attention in a particular way, on purpose, in the present moment and nonjudgmentally.” His program called “mindfulness-based stress reduction” (MBSR) has been researched extensively and can help people cope with stress, anxiety, pain, and other physical and emotional challenges. MBSR is now offered to patients and the general public at a growing number of medical centers, hospitals, and other health-related organizations. Some of these institutions have developed whole departments focused on teaching and researching mindfulness practice. For example, see the University of California, San Diego’s Center for Mindfulness at: http://mindfulness.ucsd.edu

“Before we go to a movie, my husband and I try to discuss the write up about it and review the general plot. That way I am a little prepared for the general themes. Then we also talk about the movie afterwards to refresh my memory.” “If you go to a movie theatre, take a ﬂashlight! It’s dark inside and easy to trip. That can sure wreck your enjoyment of the movie!” “I used to like a good detective movie or a shoot-em-up, but now I ﬁnd they are often just too stressful. I know my brain has slowed down a bit and it’s exhausting to try to keep up with car chase scenes or people yelling a lot. So, I try to stick to more uplifting kinds of feel-good movies. Even if I don’t remember the details, I leave the movie theatre feeling happier, so that’s worth the price of admission.” “Don’t try to do too many things at once when you’re watching a movie. If you’re watching one at home and trying to eat dinner at the same time, and the phone rings, and the dog starts barking, it’s too much. Just focus on one thing at a time.

So what role can mindfulness have in the lives of people with Alzheimer’s or a

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related disorder and their care partners? Research suggests that chronic stress can place a person at increased risk for Mild Cognitive Impairment (MCI) or Alzheimer’s disease (AD). Also, many people diagnosed with these conditions report that the challenges of memory loss and other changes in thinking often make it diﬃcult to keep up with the many things that compete for our attention. This can contribute to stress. For example, we try to eat breakfast while reading the morning paper and talking to our spouse with the television on in the background. Although people with memory loss are often counseled to focus on one thing at a time in order to accomplish tasks or manage memory challenges, this is not always easy. Our attention becomes easily divided or distracted in too many ways.

one just observes them non-judgmentally and then focuses the mind back to the inhaling and exhaling of the breath. Though difficult at first, practice can lead to improvement, and to a better understanding of how the mind functions. Recent research reveals that mindfulness meditation practices may provide some benefits to people with Mild Cognitive Impairment (MCI), early Alzheimer’s disease (AD), and their care partners. Rebecca Erwin Wells, MD and colleagues conducted a small, randomized study of people with MCI and found that those who were trained in MBSR and practiced the mediation/yoga combination for at least two hours a week had less shrinkage in the hippocampus (an area of the brain responsible for memory) and increased connections across other regions of the brain that are affected by MCI or AD. This study needs to be replicated with larger numbers of participants, but does suggest exciting ways in which mindfulness meditation might have a positive influence on brain structure and connectivity. A new study on the topic of meditation was recently published by Ken Paller and his colleagues at Northwestern University and Northwestern's Cognitive Neurology and Alzheimer’s Disease Center in Chicago. They tested an 8-session class in mindfulness training for individuals with early-stage

One objective of mindfulness is to focus the mind more eﬀectively with full attention. This important skill can be improved over time through regularly practicing a type of meditation that focuses on the cycle of breathing. When distracting thoughts or concerns arise,

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dementia and their care partners. Meditation was beneﬁcial for both groups by easing feelings of depression and improving sleep and quality of life. Participants learned to focus on the present and ﬁnd enjoyment and acceptance in the moment instead of worrying about the future.

The practice of mindfulness is also being introduced to family and professional caregivers as they learn to provide compassionate care to persons at all stages of Alzheimer’s or a related disorder. Marguerite Manteau-Rao, LCSW is founder of the Presence Care Project, a mindfulness-based dementia care training program for caregivers that has also included persons with dementia. Her website features an informative section of articles under the “publications” tab and podcasts of a few sample meditations: http://www.presencecareproject.com/ She notes that mindfulness allows us to step outside of our usual way of thinking and respond more eﬀectively and compassionately to whatever is happening in the present moment. She oﬀers the following as one simple practice to do every day to ease stress and develop a calmer mind:

Although the participants with dementia in this study had mild-to-moderate memory loss, they were able to use preserved thinking abilities during the mindfulness training exercises and experienced positive benefits. This is the first study to show that the care partner and the person with dementia both benefit from participating in mindfulness training together. “Mindfulness involves attentive awareness with acceptance for events in the present moment. You don’t have to be drawn into wishing things were different. Mindfulness training in this way takes advantage of people’s abilities rather than focusing on their difficulties.” --- Ken Paller, PhD

• Find a quiet place and a chair to sit in. • Close your eyes and focus your attention on your breathing. • Every time your attention wanders from focusing on inhaling and exhaling, just bring your attention back to the act of breathing. • Try to do this for a few minutes at a time and then gradually increase the meditation time as you become more familiar with it.

For more information on this program and research study, contact Ken Paller at kap@northwestern.edu. For an example of one of the classes from the training, you can watch a full-length YouTube video at: http://youtu.be/D1MutebKiik

If you have never practiced before, it can be helpful to begin with a guided tape. You can listen to brief

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podcasts with Marguerite Mandau-Rau through her website as noted above (click onto the “podcasts” tab) or search on YouTube under “Meditation” for many options.

“Today, at least 70,000 volunteers are urgently needed to participate in more than 150 active clinical trials and studies in the United States that are testing ways to treat, prevent, or cure Alzheimer’s disease. All kinds of people, including healthy volunteers, are needed.”

If you have had experiences with mindfulness or other meditation practices that you would like to share with Perspectives readers, email a note to Lisa Snyder at: lsnyder@ucsd.edu . We always like to hear from you!

RESEARCH UPDATES Participating in Alzheimer’s Research: For Yourself and Future Generations The National Institute of Health (NIH) and the National Institute on Aging (NIA) are signiﬁcant funding sources for research in Alzheimer’s and related dementias. The NIA maintains an excellent educational resource center through Alzheimer’s Disease Education and Referral (ADEAR). View their comprehensive and highly informative website at: http://www.nia.nih.gov/alzheimers .

You can read this publication online at: http://www.nia.nih.gov/alzheimers/p ublication/participatingalzheimers-research/introduction A New Clinical Trial for People with Mild-to-Moderate Alzheimer’s NOBLE (also called T-817MA) is a study to evaluate a drug that targets amyloid beta, a protein that causes damage to brain cells in people with Alzheimer’s. Participants will receive the study drug or a placebo. Participants who are already taking Aricept or Namenda, will likely continue to take their medication along with the study drug or placebo. The investigational drug may work by protecting brain cells, which could result in improved memory.

ADEAR’s most recent publication, Participating in Alzheimer’s Research: For Yourself and Future Generations provides a helpful overview on how clinical trials are developed, important considerations and steps in participation, ensuring privacy and safety, and ways to ﬁnd clinical trials near you.

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HELPFUL RESOURCES from CANADA and the UK

The study will enroll 450 people at over 40 research sites across the US. Total participation time is about 14 months. To learn more about this study, participant qualiﬁcations, and whether there is a site near you, see clinicaltrials.gov and enter T-817MA in the search box: http://clinicaltrials.gov/

More Informative Guides from Murray Alzheimer’s Research and Education Program (MAREP)

Murray Alzheimer’s Research and Education Program (MAREP) is based at the University of Waterloo in Ontario, Canada. MAREP is committed to research and education in Alzheimer’s and to improving the quality of life for people living with a dementia. Over the years, MAREP has produced a number of excellent hands-on guides called the “By Us For Us” guides. This series of informative booklets is written by persons with dementia and/or their care partners. The newest in the series of booklets is “Living Safely.” It oﬀers many tips and strategies concerning safety issues in and out of the home including driving, ﬁnancial and physical safety, the use of technology, health and medication, and the safety of persons with dementia when home alone or living alone.

Insight Into Emotional Memory Edmarie Guzmán-Vélez and colleagues at the University of Iowa reported ﬁndings from a small study that illustrates how people with Alzheimer’s can retain an emotional memory of an event longer than they remember actual details of the event. The researchers showed study participants 20 minutes of sad and then 20 minutes of happy movie clips. Before and after watching the clips, participants answered questions about their feelings. After watching the movie clips, they had higher levels of sadness or happiness for up to 30 minutes even if they did not remember any details of what they had watched. These ﬁndings support the fact that people with Alzheimer’s can forget an experience that caused a strong feeling, but still retain the feeling for many hours, days, or longer. It is wise to be alert to both positive and negative emotional experiences and not assume a feeling will disappear just because the memory of the associated event is forgotten.

The “Food & Mealtime” guide includes the experiences of persons with dementia and family care partners. Food and the social connections associated with it are essential activities in daily life. This guide covers issues such as grocery shopping, preparing meals, safety in the kitchen, and going out to eat in a restaurant.

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All guides in this series can be purchased or read online at: https://uwaterloo.ca/murray-alzheime r-research-and-education-program/edu cation-and-knowledge-translation/prod ucts-education-tools/by-us-for-us-guide s

DEEP has published a number of guides aimed at supporting people with dementia and helping organizations better serve this population. All of the guides have direct input from people with dementia and some are created solely by them. Many of the guides are directed to professionals and can be helpful resources for people with early-stage Alzheimer’s to share with Alzheimer’s or dementia-related organizations in their communities. Titles include: Creating Websites for People with Dementia; Dementia-Friendly Tips for Employers; Choosing a Dementia Friendly Meeting Place; Collecting the Views of People with Dementia; and Involving People with Dementia in Conferences and Events.

Useful Tools for Professionals Working in Early-Stage Dementia The Dementia Engagement and Empowerment Project (DEEP) brings together over 35 diﬀerent groups comprised of people with dementia from across the UK. These groups work in their local communities to increase awareness about dementia and to change common misperceptions about living with Alzheimer’s or a related disorder. DEEP provides ways in which regional groups can share their experiences and learn from one another. Individuals and/or groups serve as consultants on local and national projects related to dementia advocacy, support, and services, and may serve as speakers at conferences or other forums.

You can learn more about DEEP and read these guides on the organization’s website at: http://dementiavoices.org.uk/ Click onto “DEEP Guides” under the “See Also” tab.

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Volume 20, Number 1: Fall 2014 – Winter 2015 My Journey with Lewy Body Dementia by Robert Bowles Getting to Know LBDA Mind & Body: A Chance to Connect by Kerianne Marton, MA A Winter Resource Reading About Research: Things to Keep In Mind Volume 20, Number 2: Spring, 2015 My Thoughts About Living with Alzheimer’s by Cynthia Guzman Helpful Information About Young-‐Onset Dementia A Website to Explore The Importance of “Staying Connected” by Lisa Rummler Volume 20, Number 3: Summer, 2015 Dementia Diaries: An Innovative Program Gives Voice to Persons with Dementia StoryCorps: Every Voice Matters World Alzheimer’s Month: September 2015 Thoughts on Life Lessons

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A Connection: The Memory Café Movement by Beth Soltzberg Volume 20, Number 4: Fall, 2015 - Winter, 2016 Which Me Am I Today?: Excerpts from A Blog by Wendy Mitchell Brightening Up The Winter Blues Counseling People with Early-Stage Alzheimer’s: An Interview with Author and Counselor Robyn Yale, LCSW

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Reflecting on this question I concluded that this reversal in well-being related to finding purpose in life. After selling my pharmacy I had owned for 38 years, I felt my life was over. I lost my purpose in life. No longer did I have my patients to love and care for. Over the next 18 months, I visited eight physicians. My original diagnosis was depression. I was placed on an antidepressant. Not responding to that antidepressant, a second one was added. After taking this new medication for only 11 days, my body would hardly move. The medication was stopped. I was referred to a cardiologist who diagnosed me with orthostatic hypotension. Ultimately, I was taking seven pills a day to raise my blood pressure and two a day to lower it. Not improving, the cardiologist referred me to a neurologist. On my first visit I was diagnosed with Parkinson’s. I returned in one month, and the diagnosis was changed to likely being frontal temporal dementia. This neurologist referred me to a memory and cognitive center. On my first visit, I was given a diagnosis of LBD.

Volume 20, Number 1: Fall 2014 – Winter 2015 My Journey with Lewy Body Dementia Several weeks ago I found myself reﬂecting on my journey with Lewy body dementia (LBD). I became intrigued as I followed my journey in my mind. I had read that “LBD is a progressive disease, meaning symptoms start slowly and worsen over time.” The question came to me, “How can someone be doing so poorly at the time of diagnosis and be doing as well as I am now?”

Initially, my reaction was ‘it is what it is and everything will be OK.’ I had no

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idea what path my journey would take. Within two months of diagnosis, I was hallucinating and dream acting. I was sleeping 16-to-20 hours a day. The only time I would wake up was for my wife to tell me it was time to eat. I would immediately go back to sleep.

someone with LBD. I refused to be discouraged, but then it was determined I would need cervical disc surgery. This surgery, being the third in just 6 months, was even more diﬃcult to recover from. My desire for advocacy exceeded the setbacks that occurred as result of three surgeries. Dementia Mentors was born, and I quickly got involved. There are many brief videos on the website where persons living with dementia share experiences and how they meet the challenge. Persons with dementia can request a mentor on this site, and they will be paired with someone who is experiencing the same type of dementia. http://dementiamentors.com/. I have even had the opportunity to mentor persons with LBD who live both inside and outside of the United States.

My neurologist made several medication changes, and I started improving. I improved so much I drove myself to the airport, flew to Orlando, and attended a conference. I continued to improve and even hosted a Lewy Body Dementia Association (LBDA) event 16 months after diagnosis. I planned it one night in just 4 hours. It was through this event that I found my new purpose in life. I began to realize there was life after a diagnosis of LBD or any dementia. I realized that I did not need to read the final chapter. I became intrigued with advocacy when I served on the executive committee of the Georgia Pharmacy Association. I decided to pour my efforts into advocacy. I wanted others to know dementia was a disease, and there was no stigma in it. I wanted others to know, yes, there is life after diagnosis.

Enjoying Dementia Mentors, I was ready to add another opportunity. I was asked to administrate a Facebook page for the Forget Me Not dementia support group. This page is speciﬁcally for LBD. We share our experiences, strength and hope, while oﬀering love, care and compassion to others. https://www.facebook.com/groups/14 66664356939288

Doors began to open as I followed my new purpose. One door opened I did not like. Eighteen months after my diagnosis, my colon ruptured. After 10 weeks, the ileostomy ruptured and the surgeon reconnected my colon. Two major surgeries in the span of 10 weeks was a lot for anyone and especially

Getting involved in advocacy has opened many other doors. I am a guest on Lori Le Bay’s Alzheimer’s Speaks – Dementia Chats each 2nd and 4th Tuesdays at http://www.alzheimersspeaks.com/. And, we have also recently started the

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Thomaston Memory Café in my hometown which meets twice a month. Socialization and engagement are an integral part of doing well with dementia. I want those living with dementia in my community to do well. Early in 2015 Gary Joseph LeBlanc will be providing a seminar for ﬁrst responder’s right here in my hometown. Next on the horizon will be helping businesses become dementia friendly to persons living with any form of dementia in our communities.

socially active and engaged, I have done better. Finding purpose in my life was the catalyst that made all of this possible. Dementia Mentors has an online memory café in the US twice each week and once each week in Europe. This provides social interaction which is the lifeblood of living with dementia. Sometimes, I think about the persons who have sacriﬁced their life for this great country. I think about the wounded warriors and how they have returned to this country with things like post traumatic stress disorder (PTSD), amputations, broken families, and other things. When I think about this, it greatly diminishes my thoughts of what I am experiencing. As I think about the wounded warriors, it causes me to forge ahead and live with LBD well.

I am fortunate to have received an early diagnosis and to have excellent medical care of my LBD. Most likely, many will read this article and say there is no way this person could have LBD. I even questioned my diagnosis up until eight months ago. Now, I realize there is no doubt I have LBD. It now takes me longer for memory recall, my Parkinsonism symptoms have increased, my ﬂuctuations in thinking abilities are more frequent, and I have less notice that it is about to occur. I dream for better methods of diagnosis so that early diagnosis may occur when appropriate. Early diagnosis has allowed me to do the things that I am doing. Even with the changes that have occurred in my life and the increased symptoms, I refuse to be discouraged. For me, a positive attitude is everything. It sets the stage for how I will live with LBD. I know that as I have become

Getting to Know LBDA “Dementia” is a general category for over 70 diﬀerent medical reasons for abnormal changes in cognitive (thinking) and functional abilities.

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Although Alzheimer’s disease is the most common form of dementia, Lewy Body Dementia (LBD) aﬀects over 1 million older adults in the US and accounts for up to 20 percent of people with dementia worldwide.

Mind & Body: A Chance to Connect The New York City Chapter of the Alzheimer’s Association is incredibly proud of our Harry and Jeanette Weinberg Early Stage Center. The Center offers many different types of groups for people with early-stage memory disorders. In February 2014, we began to offer Mind & Body, a weekly yoga and relaxation group. This program allows participants to take time to care for themselves and focus on their overall well-being. For one hour, we are able to drop any worries or to-do lists, and spend time together just to breathe and feel.

Lewy Body Dementia can be difficult to diagnose and usually involves changes in thinking as well as physical symptoms consistent with Parkinson’s disease such as tremor, slowed movements, and sleep disturbance (physically acting out one’s dreams). People with LBD can also hallucinate or have fluctuations in their thinking abilities, and it may be difficult to find support for these unique experiences. The Lewy Body Dementia Association (LBDA) is dedicated to raising awareness of LBD and to providing support to people with LBD and their families, as well as professionals involved in LBD research or care. The Association was formed by a group of caregivers who met in an online LBD caregiver support group. The Board of Directors of LBDA are located throughout the United States, and LBDA volunteers are from the United States, Canada, and the United Kingdom, thus providing international outreach and collaboration. The organization’s website provides a wealth of educational and support opportunities and can be explored at: http://www.lbda.org/

Living with an early-stage memory disorder has unique challenges and stresses and it is important to take time out to relax. During our sessions, group participants utilize many breathing,

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meditation, and movement techniques to calm their nervous systems and de-stress, as well as to lengthen and strengthen their bodies.

lose our deep breathing, it alerts us to take a step back. We then begin to link the breath to our movement in a very mindful way. Some of our favorite sequences and poses include sun salutations, the eight movements of the spine, self-acupressure massage, tree pose, and victory pose. All of our poses are done either seated in a chair or standing. There are many versions of each pose, which means each person can participate in a way that feels comfortable.

The exercises we do often focus on symptoms or issues that are common to the group and to seniors in general. For instance, we do many exercises to improve balance and coordination, in an effort to reduce the risk of falling. We also try to focus on digestive health, which many people struggle with due to side effects of their medications. Reducing stress can affect a person’s mood and improve his or her overall health and well-being. This can be very helpful in managing other dementia symptoms.

Often at the beginning or end of the session, we will read an inspirational passage from a book or magazine, a poem, or some other written word. One of our very favorite readings is from Perspectives. It is from the Summer 2013 issue, and is titled “Gratitude is the One Pill Everyone Should be Prescribed.” We highly recommend this piece!

The main goal of our sessions is to feel better when we leave than we did when we came in. We especially focus on doing what feels good in our bodies today. For each participant, each pose will feel different and will look different, too. We usually begin the session with a few moments of seated meditation, checking in with how our bodies feel. We then begin to bring our awareness to our breath. For the full hour, we concentrate on our breathing. Focusing on the breath means that we are paying attention to what is happening in the moment, and not to anything else going on in our lives. This attention to the breath has the added benefit of keeping us safe; if we go into a pose too far and

As one Mind & Body participant shared, “No matter what is going on in my week, I know I have this group. It’s the highlight of my week!” Mind & Body is a very special time for all of us who come together for a chance to connect to our bodies, our breath, and most importantly, each other. To learn more about the New York City Chapter’s Early Stage Services, including the Harry and Jeanette

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Weinberg Early Stage Center, call our 24-hour Helpline at 800-272-3900 or visit our website at: http://www.alz.org/nyc/index.asp and click onto Early Stage Services.

outdoors alone in very cold weather could lead to hypothermia. Also, some people may forget to dress warmly enough or forget to turn up the home thermostat to a comfortable temperature and become dangerously cold without realizing it.

The Chapter is grateful to all of the generous donors of our Early Stage Services and in particular, Jeﬀrey N. Jones and The Warner Foundation, Inc.

discusses hypothermia and its warning signs, how to prevent the condition in the home or outdoors, and case examples of people at risk. Read this important and helpful booklet on the National Institute of Aging website at: http://www.nia.nih.gov/health/public ation/stay-safe-cold-weather/what-hyp othermia

A Winter Resource In many regions of the world, winter months pose challenges for staying warm and healthy. The National Institute on Aging (NIA) has an informative 15-page publication called that oﬀers older adults tips on staying warm and avoiding a dangerous condition called “hypothermia.”

Reading About Research: Things to Keep In Mind It seems as though almost every week we hear about a new study that reports exciting progress in dementia research. There is so much work happening in this field and research is crucial to finding treatments and a cure. However, sometimes these studies have conflicting results and they can be hard to interpret. One study might tell you that a particular food or beverage is good for the brain, while another study might show a different result. How do you know what to believe? It is important to stay objective when you read or hear about new research and there are several factors to keep in mind when thinking about how reliable and

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relevant a study may be. The following information can help you understand and interpret the results of research studies:

humans. However, testing something using animals does not mean that the same results will be found when the same test is conducted with humans. How many subjects? The higher the number of participants, the more likely the results will be representative of the population being studied. For example, a study with only 10 participants cannot claim to represent a large segment of the population, although it may indicate a potential direction for future research.

Is it a book, a scientific magazine, a popular magazine, a newspaper article, a government web page or a web page from someone with no relevant credentials? Anyone with an opinion can write an article on a web page, but only serious research is published in scientific magazines or peer-reviewed journals (publications reviewed by professionals working in the same field).

Do the participants in the study represent the population at large? For example, if the subjects are all experiencing the early stages of Alzheimer’s disease, are the ﬁndings applicable to everyone with Alzheimer’s disease? What about other kinds of dementia?

Legitimate research articles always state the name of the researchers, their credentials, the organization where they work, when the research was done, and where the research study was originally published.

Did the study include a group of participants (a control group) who did not receive treatment or participate in the activity that was studied? If so, did this group score worse, better or the same as participants who received the intervention?

When reading a study, check the methodology (how the study was designed and conducted) to put the ﬁndings in perspective. If the methodology is not explained, it is hard to form an opinion on how valid it is. Here are some other things to consider about the methodology:

Who funded the study? If the funding agency has something to gain or lose by the results (such as having a product

Animal or human? Some studies may be conducted on animals rather than

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or medication approved or rejected), there is more potential for bias. If it sounds too good to be true, it probably is. Research funded by independent agencies and reviewed by other researchers who didn’t assist with the study is less likely to be biased. Reputable journals require authors to declare any conﬂicts of interest.

researchers examine and combine all of these results to look for patterns.

BRAINSTORMING

Conclusions from the findings of a study should stay within the parameters of the research areas that were studied. Be wary of vague and sweeping generalizations, such as “everyone should take gingko biloba.” Did the study effectively demonstrate a “cause and effect” relationship between the findings and the conclusions? Things can be associated with each other without one causing the other. For example, the presence of aluminum in the brains of people with Alzheimer’s disease does not necessarily mean that aluminum causes Alzheimer’s disease. One possibility might be that aluminum is a by-product of the disease.

We asked participants of the weekly memory loss support group at UC San Diego’s Shiley-Marcos Alzheimer’s Disease Research Center: “Why do you participate in research?” Here are a few of their replies: “My doctor recommended it. What did I have to lose? The doctor gave me a chance for something that could help me, I think it has worked to slow down the progression, and it was worth a shot.”

One experiment is never deﬁnitive. While multiple studies can come to diﬀerent conclusions, there must be several studies done in an area to know we can trust the results. When enough research has been done on a topic,

“I’m the third generation in my family with Alzheimer’s. I participate in research partly because I want to be cured and I feel good about it.”

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“The Neurologist told me to and that got me to this Alzheimer’s Research Center and that got me to this support group which is the highlight of my week!”

inside and out and I never had trouble with that, and I had a pretty good memory. But I started having trouble with some of those things. I was getting lost and my memory wasn’t too good. So I went to the doctor and I was diagnosed with Alzheimer’s.

“I have the problem and I worry about my kids. Both of my parents had Alzheimer’s. I’m doing all I can to ﬁght it.”

Now today, two and a half years later, I can’t do most of those things – not just a few, I don’t do any of them. I live in a retirement community so I guess I’m in retirement. I’m getting really retired! But I can care for myself and like a lot of my friends, we do ﬁne socially outside. But if you come into our rooms and follow us day-to-day and live with us for a long time, you’d see our problems.

“If you didn’t have volunteers for research we wouldn’t have anything!” “I want to be a part of the future. I want to take part in the cure.” To learn more about research opportunities in your area, call your local chapter of the Alzheimer’s Association or look for a national research center near you at: http://www.nia.nih.gov/alzheimers/al zheimers-disease-research-centers

One time when I went shopping I didn’t hear the gentleman - I don’t hear right. I thought it was 20 dollars and he said 28 and I thought, “Why are you charging me so much?” I had three items over seven dollars, but in my mind, I didn’t understand that. Then I went to the store, and I tried to scan the stuﬀ but I couldn’t ﬁgure out where to put the money. It was like a blank to me and I had to ask the girl to come and help me. I used to do that by myself all the time.

Volume 20, Number 2: Spring, 2015 My Thoughts About Living with Alzheimer’s

Then I walked outside and was getting my things ready to wait for the bus and I didn’t ﬁnd my bag and I had to go back in. I didn’t even take the stuﬀ after I had purchased it. That was like a whole bad day and I went home and went to bed. Because when I get to bed I

I was a nurse for 30 years and during those years I did a lot of traveling. For eight years I traveled throughout Maricopa County [in Arizona] doing 300-400 miles a week and I never got lost. And I used to maintain my home

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can’t get into trouble and my mind feels so much better. That’s how I fix it. And my friends say they do the same thing. A friend of mine was talking about spiritual- I don’t think I have that either anymore. I think I’ve lost the spiritual part of my life. It isn’t that I don't’ believe, but it’s also not like I can go to a service and really gain anything from it anymore. I’ve had these changes and I just have to learn to live with them and go with the flow. Like when I first started having trouble, I got lost in the car and I was having trouble with the lines in the road. I couldn’t make out the white lines and what side to be on. But when they said it was probably better that I didn’t drive, I said OK, I just won’t drive then. I experience enough stress with it that I think maybe it’s good to stop.

I had to write an article one day and my friend who writes for me was out of town. I don’t know how to cut and paste [on the computer] and do all of that, so I wrote the article in an email and it took me about an hour and a half. And then out of the next 24 hours, I slept 20! It’s like physical work, but it did that to my brain. My son said, “Don’t do that anymore”, and I just had to accept that it was too much for me to do. I’m in a support group and there is something about sitting at a table with people who have the same problem. The thing about some groups is that they like to focus on what they did. But I think it’s better for us to talk about what we do now because that’s where we’re

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at. You get such a feeling that the others really know what you’re going through. I want to tell my story so other people get help because I’m not having a hard time dealing with this. It’s the support of my family, good doctors I’m going to, and the Alzheimer’s Association. I deal with it day-to-day and I don’t get up thinking, “Oh I have Alzheimer’s.” I just get up thinking it’s another day.

they have to deal with us. I compare it to going to the Grand Canyon and putting our loved ones in lawn chairs by the ledge. They see us walking towards the ledge and they think, ‘‘We see these changes but they can still walk” and they just won’t look into it. And then we fall off the ledge and then they get all excited and say, “We saw it and we should have done something about it.” My goal is to stop the falling off the ledge. I want people to do something when they see things that are going wrong. Everyone should get the help because it’s not just affecting the person who has it. It’s affecting the people around them. We all need help but it only comes when you’re willing to accept that there’s something wrong.

I just have to take a little bit more time. People need to go slower or repeat sometimes. But they don’t need to treat me any diﬀerently because I’m OK. I am a whole person. Maybe not with the mind, but the rest of me is a whole person. People need to learn more about the disease process so they don’t look at me and think I need some special treatment. They need to treat me like anyone else. I want people to know that it’s so important that they get an early diagnosis because sometimes it isn’t Alzheimer’s. They feel that word is such a stigma that they don’t want to go to the doctor. But it’s so important that they do so they can get diagnosed correctly so they can take the medications or get a medical plan. And once they get the written diagnosis, that gets them into beneﬁts or programs.

I’m running a race and our race isn’t one that we get a gold metal, but our race is one that we’re going to ﬁnd an end to Alzheimer’s. So I just want it as a legacy to have my name there with theirs that we worked as a team. I’d like to put everyone at the Alzheimer’s Association out of work. I know that doesn’t sound right but I know that when they are put out of work, then together we have worked and put an end to Alzheimer’s.

It’s not just for the person with Alzheimer’s. It’s for the family members. We didn’t ask for this disease and they didn’t do anything wrong that

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Alzheimer's Foundation of America has an excellent teens program for families who still have children at home: http://www.afateens.org/

http://www.alzheimersblog.org/2014/ 04/18/alzheimers- person-account/

The Alzheimer’s Association also provides helpful information on their website at: http://www.alz.org/i-have-alz/if-youhave- younger-onset-alzheimers.asp

Helpful Information About Young-‐Onset Dementia Young-onset (also known as early-onset) dementia occurs in people under age 65. It is estimated that one in ten people with Alzheimer’s or a related dementia are young-onset. Cynthia Guzman, diagnosed at age 63, (see cover story) and the new book, “On Pluto” (reviewed on page 4) both reﬂect voices of persons with young- onset dementia. These individuals and their loved ones may struggle with unique ﬁnancial, social, and family challenges, and there are a growing number of resources to address these concerns. The National Institute on Aging’s Alzheimer’s Disease Education and Referral (ADEAR) has a great deal of written materials for young-onset families: http://www.nia.nih.gov/alzheimers/ea rly-onset-alzheimers-disease-resource-li st

Book Review: On Pluto Inside the Mind of Alzheimer’s Reviewed By Daniel Kuhn, LCSW is both a memoir and a personal account of Greg O’Brien’s experience of young-onset Alzheimer’s disease. A head injury sustained in a bicycle accident evidently unmasked the disease that he believes was inherited from his mother and grandfather. A veteran journalist and publisher, O’Brien records his thoughts and feelings about the disease since he was diagnosed at age 58. Due to remarkably well-preserved writing skills, he produced this book seven years later.

This section is directed speciﬁcally to children and teens: http://www.nia.nih.gov/alzheimers/re sources-children-and-teens-about-alzhei mers-disease

From the beginning, O’Brien states that his goal is not to describe “a pity party” but rather to oﬀer an insider’s guide of how to battle this disease for as long as possible. He explains his anger and sadness about having his career cut short and becoming

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dependent upon his family and friends. However, he deepens his appreciation for them as well as other important ﬁgures and events in his life.

A Website to Explore The Alzheimer’s Society is the primary organization devoted to Alzheimer’s disease and related dementias in the United Kingdom. Their extensive website has an excellent section on “Living with Dementia” with a wealth of practical information and personal testimonies from people with dementia on topics including dealing with memory loss; remaining independent; younger people with dementia; and sharing your experiences. Click on to Living with Dementia at their website at: http://www.alzheimers.org.uk/

O’Brien uses the metaphor of the mysterious planet Pluto to describe his experience of Alzheimer’s. The pivotal point in his story is the actual diagnosis when he entered a phase of “full-throttle denial.” But in due time he makes a choice to make the most of his situation in spite of his erratic symptoms that eventually become a pattern to be reckoned with on a daily basis. He heeds his doctor’s advice to remain as physically and mentally active as possible. He reﬂects upon the blessings of his early years within a large family, his wife and children, and an award-winning career. And he compares his struggle with Alzheimer’s with how his aging parents dealt with their own illnesses. O’Brien is coming to terms with a disease that is slowly robbing his intellectual skills that had served him well. At once ﬁghting and accepting his fate, he describes the delicate balance between living and dying and how to appreciate the past as well as the present moment.

The Alzheimer’s Society also provides a series of informative “Living with Dementia” booklets that are available to download from their website at: http://www.alzheimers.org.uk/site/scr ipts/download_info.php?downloadID= 147

Research Updates The past decade has seen many disappointments in hopeful clinical trials aimed at the treatment of Alzheimer’s disease. It is easy to become discouraged or feel that progress is advancing too slowly. While many scientists and families aﬀected by Alzheimer’s or a related disorder share in this impatience, it is also important to realize that each “failed” clinical trial adds to the body of knowledge essential to progress. Every person’s participation in these trials is of value regardless of the outcome.

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clinical trials. Based on these exciting preliminary ﬁndings, the drug will skip from Phase 1 to Phase 3 in the clinical trial process with new trials likely to be announced later this year.

One very active area of research and clinical trials has been in the development of an anti-amyloid antibody. An antibody is a kind of protein used by the immune system to identify and fight off foreign entities in the body. The body commonly produces antibodies to fight off viruses or infections. Pharmaceutical companies have been attempting to create an antiamyloid antibody because abnormal amyloid protein accumulation in the brain (amyloid plaque) is thought to be a likely cause of Alzheimer’s. However, anti- amyloid antibody studies thus far have not been successful.

The National Institute on Aging’s Alzheimer’s Disease Education and Referral Center (ADEAR) provides a wealth of helpful information to answer common questions about participating in clinical trials for Alzheimer’s or a related disorder including descriptions of over 150 trials, a nation-wide map of their locations, and online educational videos about experiences with clinical trials. Call ADEAR at 1-800-438-4380 of view their website at: http://www.nia.nih.gov/alzheimers/v olunteer

Despite these setbacks, one new antibody has recently received considerable press in the scientiﬁc community. Biogen Idec’s BIIB37, (also known as Aducanumab) is an anti-amyloid antibody that appears on initial study to clear amyloid from multiple areas of the brain better than previously studied antibodies. In a Phase 1 trial (primarily evaluating safety and tolerability of the drug) in people with mild Alzheimer’s, the drug resulted in an improvement in thinking abilities in study participants and indicated a stabilization of further decline when given at the highest dose. These very encouraging results will need to be replicated in much larger

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summer. “After dinner every night, we would sit out in our backyard, enjoy the fresh air and discuss pleasant events,” he says. “One evening, we found ourselves staring at the clouds, and it brought back memories of being children, when we would look for shapes in the clouds. That memory inspired us to look for shapes in the clouds again and to talk about memories of our childhood.”

The Importance of “Staying Connected”

Kenneth says he and Lucille gained this renewed enjoyment of their backyard — and benefited from everything that came with it — thanks to , a health-promotion and social-support program designed for people with early memory loss, and their care partners. Researchers at the University of Washington designed the four-week program, which was funded in part by a grant from the Administration for Community Living and provided in Oregon by the state’s Alzheimer’s Disease Research Center, and the Alzheimer’s Association Oregon Chapter. Staying Connected focuses on the benefits of social engagement for people directly and indirectly affected by early memory loss. In the program, participants learn strategies to help carry out enjoyable pastimes, how to cope— and live — with having early memory loss, how to celebrate accomplishments, and how to

Kenneth and Lucille got engaged when she was a senior in high school (he had graduated the year before). Shortly thereafter, acting on the advice of his father, Kenneth bought a plot of land in Portland, Oregon, and the couple had a house built. Fast-forward several decades, and the high school sweethearts are still married, and they still live in the same house with a lovely backyard. They’ve spent countless hours together in and around their home, but Kenneth says he and Lucille (who has dementia) never enjoyed spending time together in their backyard as much as they did this past

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communicate one’s memory loss to others.

same issues. It also made me more mindful of resources that are available, and it’s given me an outlet; I’ve become involved in a monthly [support] group.”

A key component of the program is participants’ weekly homework assignment: creating a “pleasant events plan.” By engaging in the activities and pastimes in their plan, individuals with early memory loss and their caregivers can focus on being in the moment. As the program progresses, participants begin to make the connection between the “pleasant events” and their improved mood, as well as a sense of accomplishment.

For Janice, who participated in a diﬀerent session of , the program “turned into a wonderful support group. It became a safe place to ask questions, and I looked forward to going to it,” she says. “It was an opportunity to interact with people at the same stage I was in, and it helped me have a greater understanding that I’m not alone. And I don’t feel alone anymore.”

Kenneth says Staying Connected also inspired him and Lucille to visit places they had never been, such as certain parks and museums. He and his wife also developed a good rapport with the other participants. “It seemed kind of like a support group, and it made it easier to share your feelings,” he says. “We became particularly acquainted with the other two couples in the program, and we all have lunch together once a month.”

For more information about — and how to bring the program to your community — contact Rebecca Logsdon at logsdon@uw.edu.

Fred and Ginger, one of the couples Kenneth and Lucille befriended in , also had a positive experience with the program, and they both recommend it to anyone facing a similar situation. “We were pretty isolated,” Ginger says. “We got involved to learn more about how to cope and to get information. It was helpful to get involved with other people facing the

BRAINSTORMING In the article on the author mentions the importance of having scheduled “pleasant events.” We asked participants of the early-stage support group at UC San Diego’s

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Shiley-Marcos Alzheimer’s Disease Research Center: “What is your idea of a “pleasant event?”

Volume 20, Number 3: Summer, 2015 Dementia Diaries An Innovative Program Gives Voice to Persons with Dementia

Here are a few of their replies: “I like my current events group especially when the group focus is on foreign relations.”

It is not uncommon to hear from persons with dementia that memory loss or the challenges of expressing onesself in conversation can lead to communication diﬃculties. It can be hard to have a voice in day-to-day matters or to openly express thoughts as they arise. But a novel project in the United Kingdom (UK) is helping people with dementia make their messages heard.

“I like playing golf once a week.” “I look forward to going to church. I look forward to the people more than the sermon.” “I like going to the YMCA every day. I take classes and get to know the people.” “Reading the newspaper.” “I like to walk on the beach with my wife and dog. We walk about three miles and my dog loves it and it’s good exercise walking in the sand.” “I look forward to watching my kitties and getting them breakfast. They make me smile and laugh.” “I like playing bridge when it’s a good day. Otherwise when it’s not a good day, my brain feels like swiss cheese and the thoughts go through the holes!” “I am trying to relearn the guitar. I dug it out and had to ﬁx three broken strings.”

On Our Radar is an organization that helps people or communities around the world who may not otherwise be heard to share their stories. In January 2015,

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On Our Radar started Dementia Diaries in partnership with the UK-based Dementia Engagement and Empowerment Project (DEEP). Dementia Diaries aims to help record the daily experiences of people living with dementia by providing individuals with a small hand-held portable device for reporting their thoughts and reﬂections. Participants simply press a button to record their message and the recording automatically forwards to the On Our Radar team who log the reﬂections. Thus far, over 700 clips have been recorded from 27 people with dementia, some of which have been featured on prominent radio and television stations in the UK. Themes discussed by Dementia Diaries participants include issues of care and support; public perceptions; family and friends; living well with dementia; daily challenges; and public policies and services.

the memory and something you’re trying to do, it’s as if someone has got a hole punch and punched holes in what you’re trying to do or look at or remember. Sometimes there are a few holes, sometimes there are lots, sometimes it’s almost entirely obscured by holes. The third one, which people like to use, is the Swan. Often people think you’re doing well. You’re coping well because they only see what’s on the surface like a Swan– serene and majestic on the surface and below the surface, paddling madly. The fourth metaphor, one which has occurred to me recently, is about mining – coal mining...This is because living with dementia is sometimes like digging a new mine and posting pit props to support safe movement in the mine. The props are like a support I receive which allow me to be safe and conﬁdent. Remove the props and the mine cracks. Very much like my ability to live as well as possible.”

Retired teacher, Keith Oliver, reports his thoughts about metaphors for Alzheimer’s: “I think it can be useful to give people insight into my world of living with dementia. One metaphor I used is about the fog, which on bad days it’s like living in a fog and on good days – there are more good days than bad – the sun shines and life is much clearer. The other metaphor is about the hole punch which is where

Jo Bennett recorded memories of being diagnosed and how she is learning to cope:

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“I just wanted to give a bit of real talk about when I was ﬁrst diagnosed with dementia. It was a big shock because I had only gone to the doctors because my son-in-law kept saying he thought I had dementia. And to keep him happy, I went over. When I was diagnosed, we found it hard to accept. Everyone accepts the diagnosis in diﬀerent ways, but as soon as I opened my eyes until I fell asleep, it was all I could think about for nearly two years. It didn’t matter how many people or times they said you’ll get used to it. I thought, ‘no, I won’t.’ But gradually, I began to realize that I wasn’t thinking about it all the time, and there had become some space in my head for other things again. I think it’s best to keep doing as much as possible, to keep active. Don’t sit at home and vegetate. Keep your brain as active as possible with things like Sudoku, crosswords, walking, joining a group, talking.

Paul Hitchmough, is a retired taxi-cab company owner and musician who was diagnosed with Alzheimer’s in February 2014. In one recording he states: “Since I got diagnosed, I feel maybe 2025% more on the edge to write music and do songs. It’s very much a deed at the front of my mind all the time.” His song, “The Same Man”, features friends from his local dementia support group on back up vocals. “I have been really touched by the response to my single so far…I also really hope that my lyrics will resonate with people and that people will be moved by the message behind the song, which is that despite my condition, I am still the same man.” Listen to Paul’s very moving song: https://vimeo.com/135975247

My daughter said that the most helpful thing she found was having a close friend to talk to. At the beginning, she was afraid to talk to me about dementia, but we’ve had a breakthrough and I talk to her more about it now. Not only about how it’s aﬀecting me and her, but my husband, as well. So don’t keep things to yourself and bottling them up. Join groups, get help, get up and about, and share things.”

Paul is using his song for fundraising for the Alzheimer’s Society. See the website: https://www.justgiving.com/Paul-Hitc hmough

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talking, she asks me how I felt about what I said and when I’ve thought about it and said what I feel, she can go back and type those words in the right place…..So the plan is when I start to do my report for the Dementia Diaries and if my mind goes blank or I can’t think of the words, I glance down at the script and then get back on course which really helps.” Chris Forse and his wife, Carol, have formed helpful teamwork around making sure Chris can still record his messages in Dementia Diaries. In one recording, he discusses how he has overcome communication challenges with her assistance: “I’ve not made any reports lately. I’ve been finding it a bit difficult. I knew what I wanted to say. Then I’d go upstairs to send a report but often then I’d put if off, finding reasons to do it later or at another time because I was finding I just couldn’t always string the words Dementia Diaries together. My mind was going blank despite what I’d written down. Then it became a bit of a big deal for me. Although I wanted to send in reports I guess I’d lost confidence but I didn’t want to admit it, especially towards myself. So now Carol has come up with a cunning plan. Luckily she’s a trained touch typist so now I sit and talk about what I want to say, how I feel, etc. She types it as I speak; she sometimes prompts me when I go blank. And after I finish

Anne MacDonald provides a rich summary of the value of Dementia Diaries in one of her recordings: "Great to hear so many voices sharing, living with dementia. We have opened our hearts to the world. Please listen and learn from us. With personal factual information we can reduce fear built up by media headlines and sensational reporting. My voice could help someone else realize they still have a good quality of life. We all need hope and understanding. Our voices

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need to be heard for those coming after us."

collect more than 1,800 interviews from people with memory loss.

Listen to recordings of all of the Dementia Diaries participants at On Our Radar’s website: http://www.onourradar.org/dementia /

StoryCorp’s Memory Loss Initiative now offers a unique, downloadable toolkit called “Commemorate”, designed to help families or organizations record, share, and preserve the stories of persons with memory loss. Offering Commemorate conversations to people living with memory loss can enhance the bonds, whether between people at home, in social day programs, or long-term care settings. These interviews provide an opportunity for families or staff to preserve the legacy of a person with memory loss.

For more information about Dementia Diaries, contact Paul Myles at On Our Radar: paul@onourradar.org. For information about DEEP, see http://dementiavoices.org.uk/

StoryCorps: Every Voice Matters Dementia Diaries reveals the power of providing opportunities for persons with dementia to have a voice. In the USA, people with dementia have been sharing their stories in a diﬀerent way through StoryCorps, a project that is committed to recording the diverse voices and experiences of citizens throughout the country. In 2006, StoryCorps launched the Memory Loss Initiative to support and encourage people with memory loss to share their stories. The person with memory loss is interviewed by a family member, friend, or supporting professional at a Story Core booth or partnering site across the country, and stories are archived at the Museum of American Folkart in Washington, DC. Some stories are broadcast on National Public Radio or archived on the StoryCorp website. To date, this wonderful initiative has partnered with 180 organizations to

To learn more about StoryCorps Memory Loss Initiative, listen to interviews, or download the Commemorate toolkit, see: http://storycorps.org/memory-loss/ .

World Alzheimer’s Month September 2015 According to Alzheimer’s Disease International, every 4 seconds, someone in the world develops Alzheimer’s or a related dementia. September is World Alzheimer’s Month, an international campaign to raise awareness about Alzheimer’s and to challenge stigma and misinformation surrounding dementia. World Alzheimer’s Day occurs within this month on September 21st.

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“To share. Share your time, share your money, share yourself, and share your memories. My mom taught me that. “

The theme for this year’s World Alzheimer’s Month campaign is “Remember Me.” This theme can be broadly interpreted, and both the Dementia Diaries and the Story Corps projects provide inspiring examples of how we can facilitate remembering for the person with memory loss, while creating recorded legacies so a person’s thoughts and reﬂections can be remembered for future generations to come.

‘Tell the next generation the important things that happened in your life, then ask them the same question so they can also reﬂect on it with you.” “I set aside money for my kids with the stipulation that the money is only to be used for them to get together once a year and share time with each other.”

How might you acknowledge the “Remember Me” theme in your family or community? See the World Alzheimer’s Month website, or contact your local Alzheimer’s organizations to see if there are planned events in your community. http://worldalzmonth.org/eng/home

“Be cautious, careful, and try new stuﬀ.” “Try to do something you wouldn’t normally do- open your mind.” “Treat people the way you want to be treated.” “Try to instill a good work ethic- work hard.”

Thoughts on Life Lessons The “Remember Me” theme of World Alzheimer’s month can inspire us to think about life lessons and how we might want to be remembered. Participants in the weekly early-stage dementia support group at the University of California, San Diego Shiley-Marcos Alzheimer’s Disease Research Center were asked: What have you learned about life that you might want to pass along?

“Keep a gratitude list and do it by decades- the ﬁrst 10 years, 20, 30 etc. Adopt the attitude of gratitude and it will change the way you look at things.” “Remember, tomorrow is another day.” “Family togetherness is the most important thing- more important than all the success and money in the world. Treasure your time together.”

Here are some of the answers: “Have a sense of humor!”

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Medicare and other insurances do not pay for these scans.

Research Updates

In this study, Medicare will pay the costs of one scan and participants will learn their results. There will be up to 18,500 patients enrolled at over 200 sites around the USA. Participants in the IDEAS study must be age 65 or older and receiving Medicare. Perhaps the greatest impact of the IDEAS study will be on patients with Mild Cognitive Impairment (MCI) in which the person has memory loss, but it is not clear as to the cause. Amyloid PET imaging can clarify the diagnosis and could inﬂuence future treatment plans. IDEAS will likely begin enrollment in January 2016. For more information see: https://clinicaltrials.gov/ct2/show/N CT02420756

In an exciting development, the Centers for Medicare and Medicaid Services has approved a four-year 100 million study to better understand whether getting an amyloid PET scan can aﬀect the diagnosis, management, and care of individuals whose cognitive symptoms (changes in thinking) cannot be diagnosed with current techniques.An amyloid PET scan can detect amyloid, one of the proteins responsible for Alzheimer’s (AD) in the brain, but having a positive scan does not mean that one has or will develop AD. However, a negative scan in which there is no amyloid seen in the brain, rules out AD. The Amyloid PET scan can be very useful in a diagnostic work up for AD when the symptoms are complex or unusual, but currently

Many people with a family history of Alzheimer’s are hoping to ﬁnd ways to reduce their risk of developing AD. The Alzheimer’s Prevention Initiative (API) is an international collaborative formed to launch a new era of Alzheimer’s prevention research. Led by the Banner Alzheimer’s Institute in Phoenix, Arizona, API conducts prevention trials in cognitively healthy people at increased genetic risk for AD. API will continue to establish the brain imaging, biological, and cognitive measurements needed to test promising prevention therapies and has created the

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Alzheimer’s Prevention Registry to support enrollment in future prevention trials. For more information, go to http://www.endALZnow.org

“Memory” cafés across the USA, and this number is growing quickly. A café is a relaxed social gathering for people living with Alzheimer’s or a related disorder and their care partners. Cafés meet in a wide variety of settings, including coﬀee shops, museums, social service agencies, councils on aging, and houses of worship. Some cafés include educational or creative arts programming, or outings. All memory cafés oﬀer an opportunity to get out and socialize in a setting where others will understand and respect what it’s like to live with Alzheimer’s or a related disorder.

The CONNECT clinical trial will study whether an experimental drug, AZD0530 (saracatinib), will slow progression of early-stage Alzheimer’s disease. This drug is attempting to disrupt the way in which the protein, beta amyloid, forms damaging “plaque” deposits in the brain. Study researchers will use PET imaging to evaluate whether the drug is eﬀective in slowing decline, and will also evaluate the drug’s safety and tolerability in study participants. This clinical trial will enroll 152 participants nationwide and in British Columbia. For more information on enrollment eligibility or study sites see: http://www.adcs.org/studies/Connect. aspx

A Connection The Memory Café Movement Great ideas tend to spread. In 1997, Dr. Bère Miesen opened the ﬁrst Alzheimer’s Café in Holland. In 2008, Dr. Jytte Lokvig brought the ﬁrst café to the United States in Santa Fe, New Mexico. Now there are close to two hudred “Alzheimer’s” or

Support groups provide an opportunity to tackle challenges and diﬃcult emotions in the company of others who are on the cafés do not focus on disease or disability. Many people beneﬁt from both kinds of programs - a time to address problems, and a time to

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“leave the disease at the door,” as Dr. Lokvig says.

We have enjoyed writing and reciting poetry, creating a paper quilt, storytelling, dancing, singing, and learning about the history of notable artworks. The creative arts take advantage of brain functions that are often aﬀected last and least by Alzheimer’s or related disorders. For care partners, as well as people living with dementia, the arts tend to remind us of our shared humanity, and create a sense of connection among people who may have felt quite isolated when they ﬁrst arrived. Our facilitators are professional artists, so while there are no wrong answers, they challenge guests to explore and grow.

Cafés also diﬀer from support groups in that most do not ask guests for a diagnosis; they are open to those who have not been diagnosed or are uncomfortable with their diagnosis. Finally, cafés oﬀer something fun for care partners to do with their loved one or friend who has Alzheimer’s or a related disorder. Here in Massachusetts, memory cafés have been recognized by our state respite coalition as a form of respite. Often we think of respite as getting a break away from the care relationship. Time apart to do other things is important. However, spouses, parents and children, friends, and others who are in a care relationship also need a chance to enjoy each other’s company. Many café guests have told us that the café helps to “recharge” their feelings of connection. It is lovely to see café guests holding hands or with arms around each other. One of our volunteers noted that café guests look like they’re going out on a date. Don’t we all need to go on a date at times?

Each café is diﬀerent, but many oﬀer music or other art forms or activities such as visits from therapy dogs, or light exercise. Debora Tingley and Patricia Ris in San Francisco run memory cafés that focus on outings. At other cafés, guests prefer not to have structured activities, but to just sit and talk. I’ll let café guests speak for themselves by sharing some quotes from guests at the JF&CS Memory Café, which has run monthly in Waltham, Massachusetts since March 2014: “I’ve never been to a meeting like it! A very creative format. Wonderful!” - Jacob, a man living with Alzheimer’s

At our JF&CS Memory Café near Boston, time is split between unstructured socializing and a creative art activity facilitated by a guest artist.

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“This is the ﬁrst positive activity I have had in months.”- Darlene, the wife of a man with Alzheimer’s

Hope to see you at a café!

“It was so good for me to see Dad having a good time and me being able to relax for a while!!! Thanks for all the pampering, too, I needed that!!!!” - Carla, the daughter of a man with vascular dementia and Alzheimer’s

In some regions, cafés are organized into networks, and this makes it easier for guests to ﬁnd them. Dr. Lokvig, in New Mexico, of the National Alliance of Alzheimer's Cafes and Lori La Bey of Alzheimer’s Speaks in Minnesota have put there is no memory café in your region, perhaps you can be the catalyst to start one! Running a café requires an ongoing time commitment, so while some are run by volunteers, most have at least an aﬃliation with a community agency or other service provider. Talking to the social worker at your council on aging or local Alzheimer’s Association chapter can be a good place to start.

Volume 20, Number 4: Fall, 2015 - Winter, 2016 Which Me Am I Today? Excerpts from A Blog

There are wonderful toolkits available to help those who want to start a café. Good resources are the websites: www.alzheimerscafe.com and http://memorycafecatalyst.org/ The “Resources” tab includes links to café locators, and also to café toolkits.

I am 59 years young, live happily alone in Yorkshire, England, and have 2 daughters. I continued to work full time in the National Health Service until the end of March 2015, when I chose to take advantage of early retirement

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to enable me to enjoy being me while I’m able. I have never ‘tweeted’, ‘blogged’, or ‘facebooked’ in my life, but since I was diagnosed with early-onset Alzheimer’s, everything else has changed in my life, so why not this?

could finally bring closure to all the uncertainty, to all the “what ifs’, ‘buts’ and ‘maybes.’ It enables you to look at life from a new perspective and to plan and take up challenges that might otherwise never have crossed your path. For example, talented researchers may be on the brink of a new breakthrough. An early diagnosis has given me the opportunity to go on medication, which may give me long enough to benefit from such discoveries. It has also given me the opportunity to sit down and talk honestly and openly with my daughters and plan my future, which in turn has relieved them from having to make those difficult emotional decisions around my care and future treatment. Receiving the diagnosis was just as difficult for them as it was for me, but we’ve supported and protected each other through this. It must be so difficult for loved ones to feel they’re making the ‘right’ decision if no discussions have taken place. My daughters are not just my rock, they’re my mountains with their love and support.

I started this blog to allow me to write all of my thoughts before they’re lost. I have a calendar that takes care of the future, but this blog serves as a reminder of what I’ve done and said in the past – it now serves as my memory. It will hopefully convey that although we’ve been diagnosed, people like me still have substantial contributions to make; we still have a sense of humour; we still have feelings. I’m hoping to show the reality of trying to cope on a day-to-day basis with the ever-changing environment that dementia throws at those diagnosed with the condition. Living well with dementia is all about adapting. What I don’t want is sympathy. What I want is simply to raise awareness.

On July 31st, 2014, I sat in the consultant’s room and received the oﬃcial diagnosis of early-onset Alzheimer’s. It wasn’t a surprise, however, there’s always this slight hope in the back of your mind that they’ve made a mistake. But, it wasn’t to be. Some people may not want to know they have dementia. I was actually relieved to have a diagnosis. It meant I

Every day is diﬀerent. Some days it feels like Alzheimer’s has never entered my life. On bad days, it’s like a fog descends on the brain and confusion reigns from the minute I wake up. I compensate for not having much short-term memory by having my

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phone alarm set to go oﬀ when it’s time for medication or for appointment reminders. I have a monthly and weekly calendar and reminders on my iPad. I can’t drive anymore, so I walk everywhere, and if I need to go further, I take public transport. My way of dealing with confusion is to tell myself it’s the disease and the fog will eventually clear. So I’ll just sit quietly and wait. It’s a bit like a game of chess – you sit and wait for your opponent to play and then you try to outmaneuver.

luckily I’ve probably forgotten them! Bonus!

I always used to want background noise - whether it be music, television, radio. But recently I’ve found my brain prefers silence. It doesn’t have to compete with background noise and it can function better. For me, to no longer be able to do 10 things at once mustn’t be seen as a weakness, it’s simply an adaptation which has to be accepted in order to function better. What does it matter that I can’t listen and write at the same time? What does it matter that I can’t answer the phone and continue to do something else? What does it matter if I can’t talk and follow a programme on the telly? I now love to walk, read, write, talk or simply listen with no added distraction in the background. It’s amazing what you hear when your brain isn’t confused with other things.

Not being able to ﬁnd the right words is a daily occurrence. I used to get frustrated and annoyed at this. But it makes the disease seem so much worse if you let it get to you. If I forget peoples’ names, it’s annoying but I now think, ‘what does it matter?’ and simply ask them again (and again) and hope they understand. If they don’t it’s their problem, not mine.

Some days there’s a desperate panic to get everything said or written before I forget. I need much more time to get myself sorted. I get confused easily if I try and go at normal speed. Often all we need is more time. Please consider that if you have a loved one with dementia. What does it matter if it takes me an hour to do something you can do in 10 minutes? Don’t be tempted to do it for me simply because it’s quicker, as that is disabling me before

I’m sure there could be a lot more negatives if I thought about it, but

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I’ve lost the ability to do that task. Go oﬀ and do something else for an hour while I’m taking my time to do something.

Television has taken a diﬀerent turn. I used to enjoy watching soaps, but now I get easily distracted and can’t follow what’s happening. I can’t watch a series that requires you to remember past information. The programmes I enjoy now are ones where there are things to look at – house programmes where I can look at the houses; gardening programmes where I can look at the gardens. Moral of the tale – don’t give up when things no longer seem possible.

Reading is something I’ve always loved, yet it’s becoming impossible to read a book normally. The trick is, I now read diﬀerently. Clever writers write in such a way as to have a natural breaking point every couple of chapters. As long as I sense when I’ve reached that break, I can pick up the book the following evening and continue to read as though it’s a new start. It does mean you have to be more selective – for example, ‘whodunnits’ are a bit of a no-no as you can’t remember the original crime – ha! However, short stories are brilliant.

Living with dementia is all about adapting– if you accept this, it makes it easier. People often say to me that I don’t look like I have dementia. I’m not sure what I’m supposed to ‘look like’. But I live well even if it takes twice the eﬀort to do things, because if that’s what it takes, then that’s the adaption I have to make. I can’t prevent this disease, but I can join dementia research to enable me to make a valuable contribution to the lives of future generations. Research will lead to new treatments and hopefully the elusive cure,but only if we can encourage people to see the value they provide to society and their children by taking part in research now. I refuse to dwell on what I can’t do. If someone newly diagnosed asked me what advice I would give them it would be not to panic at the diagnosis. Adapt and ﬁnd new ways to compensate for the parts of

I was also surprised to find that I can’t watch new films. The concentration needed to watch a 2-hour film just isn’t there any more and you annoy those watching it with you when you keep asking, ‘Who are they?’ and ‘Where did they come from?’ But I can watch old films I’d watched before I had dementia. I still can’t remember what’s happened but it’s as though the familiarity is deep in the subconscious and it’s very satisfying to watch all the way through without the stress a new film creates.

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you that don’t function as they used to. Don’t give in!

https://uwaterloo.ca/murray-alzheime r-research-and-education-program/peo ple-living-dementia Click onto By Us For Us series of guides.

Brightening Up The Winter Blues In many parts of the world, winter brings shorter days, limited sunshine, and challenging weather that can limit one’s social activities. These factors can increase risk for depression. Depression can cloud thinking, impact on sleep, and worsen memory loss. So, if you feel more discouraged or low-energy in the winter, you are not alone, and there are ways to brighten up the mood. If you live in cold climates that make it harder to get out, stay connected with family and friends by using innovative tools like Facetime or Skype to have video calls on your cell phone or computer. While it’s not the same as in-person conversations, these options can be rewarding and provide a great way to see friends and family and stay connected. Exercise is very important for reducing depression and living well with dementia. If winter weather conditions make for limited outdoor exercise, keep moving indoors! Turn on the music and dance; get some light weights for indoor strength training (consult with your doctor or physical therapist about the best way to use light weights at home); or if you have an indoor staircase, walk up and down it a few more times a day,

Helpful Resource is a booklet in the “By Us For Us” guides published by the Murray Alzheimer’s Research and Education Program (MAREP) at the University of Waterloo in Ontario, Canada. This series of excellent resources is written BY and FOR persons living with dementia. This guide offers tips and strategies to understand safety concerns related to driving, safety at home and in the community, personal identification and use of technology, health and medication, physical and financial safety, and living alone. To view this guide and the whole series of guides, see the MAREP website:

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but make sure to hold the rail and watch your balance.

little while and try to surround yourself with more hopeful reading material or lighter television viewing content.

If grey days get you down, consider using special light bulbs or light boxes in your home that can make up for lack of natural sunlight. Getting adequate light during the day also helps to maintain normal sleep patterns at night.

The following are some tips from people with Alzheimer’s about managing the blues whenever they arise: “I’ve lost some self-conﬁdence and I’ve found that it can reduce my depression to ask for help and to have a team.”

People with Alzheimer’s are at risk for losing initiative and their “get up and go.” This problem can worsen in winter. It’s too easy to sit on the couch all day. Consider starting in on a new hobby or indoor project. Sort those photo albums; record your life stories (there are a number of fun books to help you do this or you can talk into a tape recorder); get out the jigsaw or crossword puzzles; write a letter to a friend; play cards or board games; clean out a desk drawer; ﬁnish that knitting project; watch a funny movie. You choose, but try to think of small things to accomplish or enjoy each day so you can continue to feel productive and engaged.

“Count your blessings. Think about what you can do and focus on those things. Make a list of your strengths.” “I sing to myself when I start feeling depressed.” “Staying social in whatever way you can helps with depression.” “I have to talk to myself pretty strongly when I get down. I think ‘you don’t want to do this to your children.’ It’s hard on them to see me get low.” “I make sure to just get out of the house when the weather lets up. It reduces my stress, gets me connected to the world a little more, and gives me a boost.”

When you’re feeling down, sometimes your thoughts can get gloomy, too. You may have more negative thoughts, or experience lower self-esteem. Examine any discouraging thoughts that may be contributing to your depression and try to replace them with more hopeful ones. Keep a gratitude journal of what went right each day instead of what went wrong. Stop watching the news for a

“Coming to a support group reduces my depression. We communicate how we handle things and we laugh. It helps with acceptance to hear others talk about their limitations because then I know I’m not alone.”

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“Have a bragging session! Think about what you are proudest of in life– about what you’ve accomplished and not just about what is not going right. Write down your biggest brags!”

directed to the National Institutes of Aging (a branch of NIH) for research into Alzheimer’s disease. This represents a 33% increase in funding for Alzheimer’s and is an extraordinary opportunity to advance essential research into the cause, prevention, treatment, and ultimate cure of the disease. Previously, a great deal of scientists’ very promising Alzheimer’s research could not be funded due to limited resources. Scientists and clinicians are now being encouraged to submit grants for funding in 2016 and we expect to be able to report on a wide variety of promising research advances in the years ahead!

Winter will pass and spring will come. However, if the blues are persistent, are changing your eating patterns (eating too much or too little), causing too much or too little sleep, contributing to irritability or tearfulness, or resulting in very limited “get up and go”, talk with your doctor about the evaluation and treatment of possible depression. Sometimes our own home remedies and attempts to manage the blues are not enough and that is no one’s fault. Care partners are also at risk for depression and must seek support and medical help, if needed.

Recently the Alzheimer’s Society in the UK reported ﬁndings from a survey of 300 people with dementia that 64 percent of the respondents felt isolated from friends and family following a diagnosis. The survey also found that over half (54 percent) of people with dementia responded that they were now taking part in very few, if any, social activities. Approximately half of the respondents said they would feel more connected if they could see family and friends more often and have someone to help them participate in activities and hobbies. This ﬁnding supports the importance of discussing this topic with people with dementia and creating strategies with families, friends, and

Questions to consider: What coping strategies do you use to deal with depressed or discouraged feelings? How can others help you when you are feeling down?

Research Updates

On December 18, 2015 President Obama signed a bipartisan-supported law which dramatically increased funding for the National Institutes of Health (NIH) including an allocation of 350 million dollars speciﬁcally

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communities about reducing risk for social isolation.

this is happening, necessary steps to take, and alternatives for getting along without driving.

Counseling People with Early-Stage Alzheimer’s An Interview with Author and Counselor Robyn Yale, LCSW

Just like anyone facing any other illness, a person dealing with early-stage AD may be afraid, ashamed, or overwhelmed by all the changes it causes. One's sense of identity and self-esteem can be challenged. The counselor can be a calm presence who respects and validates these concerns. The counselor can also advocate for the person to participate in family discussions and decisions so that problem-solving about daily matters and planning for the future can occur, as needed. Through counseling, a person might also be able to be connected with early-stage programs in the community as a way of meeting others, sharing coping strategies, and reducing isolation.

Counseling oﬀers a person education, emotional support, and ways of learning to cope with memory loss and other symptoms. Through the counseling experience, a person learns to focus on remaining strengths and look at new opportunities for activity, relationships, and continued purpose in life. Often a newly diagnosed person hasn’t had a chance to ask questions or process their feelings and reactions. Gaining an understanding of Alzheimer’s disease (AD) can be helpful and can assist with coping and being proactive. This book,

provides a comprehensive framework that identiﬁes the connections between the emotional adjustment, practical coping needs, and lifestyle issues faced at this point in the illness, and addresses them in an integrated way. For example, someone who is losing their driver's license might be very upset about it, but also needs to understand the reasons

Each person has a diﬀerent pace and process of acceptance. It can be challenging to stay present and not try to rush or steer the process too much. The counselor needs to work with any memory or communication diﬃculties in the sessions, using specialized communication techniques helpful to people with dementia. It can also be

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diﬃcult when there are limited early-stage services in a person’s community to refer them to for further support and engagement. So we always need to advocate for a comprehensive array of community-based support and speciﬁcally programming geared to early-stage AD.

Groups for People with Early-Stage Alzheimer's Disease: Planning, Implementation, and Evaluation) I pioneered an early-stage support group model that, over the years, became widely replicated internationally. In the beginning, those support groups didn't exist either, but now they are quite mainstream.

However, it is very rewarding to see people blossom in a transformative process, as the book's title describes. Many are able to go from feeling that there is nothing left to saying, "I'm still here", "I still matter", or "I may need a little extra time or help but I can still be involved in that." I've seen people form strong partnerships with family members, develop new friendships and talents through early-stage programs, and ﬁnd ways to contribute to their communities or to the Alzheimer's ﬁeld through volunteer work. Doors and possibilities can open rather than close when someone has guidance and support.

I'm hoping that in a similar way, people will read this new book, become excited by it, and use the model so that the service will expand. One counselor’s feedback speaks to how gratifying the process can be: “Counseling one of our participants was one of the most profoundly moving experiences of my professional life; I felt privileged to witness her capacity for accepting her Alzheimer’s and continuing to live her life with joy. To just be with her while she panicked, surrendered, and then found her way back…..”

This counseling model was the result of grant funding from the U.S. Administration on Aging’s Alzheimer’s Disease Innovation Program to the Georgia Division of Aging Services. The Georgia Chapter of the Alzheimer’s Association contracted with me to develop and implement the program. Eight weeks of counseling was provided to seventeen people by the project staﬀ,

There is still a stereotype that there is not much to oﬀer people with AD, a lack of awareness that counseling can be helpful, and little training available to professionals in these unique counseling issues surrounding early-stage AD. In my ﬁrst book (Developing Support

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Suzette Binford, Susan Formby, and Janice Adams. A formal evaluation was conducted by the Georgia Health Policy Center. Here are some of the quotes from the project evaluation:

family loves me but often ﬁnish my sentences and don’t really listen to me. You truly understand and oﬀered new ways to think about myself and my future.”

“I think this counseling is very important, because you need someone to talk to when you get this diagnosis – but very few people really understand it or what it’s like to go through it.”

“You get your diagnosis and a prescription, and the doctor says to come back in six months. So you’re left thinking, ‘Now what?’ It’s a very scary feeling. The counseling has been tremendously helpful, informative, and reassuring to me, and I hope it will become available to more people in my situation.”

“My greatest loss was feeling that I could no longer contribute to my family. You showed me how to celebrate even small accomplishments by writing them on a calendar and seeing all I really do in a week. Thank you for making me feel like a man again.”

Ms. Yale’s book is available HealthProfessions Press: www.healthpropress.com

“Thank you for letting me talk about my feelings and fears in my own way. My

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Volume 21, Number 1: Spring, 2016 I Have A Voice! By Jim Mann Reaching Out to Others with Memory Loss Awakening and Maintaining Your Five Senses Part One: SIGHT To Whom I May Concern: An Innovative Theatre Project Gives Voice to People with Alzheimer’s or a Related Disorder by Maureen Matthews Volume 21, Number 2: Summer, 2016 Two Years Later by Jennifer Snyder Reaching Out Around the Globe Awakening and Maintaining Your Five Senses Part Two: HEARING Memory Boosters: Helping Couples Connect by Anne Hopewell Volume 21, Number 3: Fall, 2016 Doing What You Can While You Can by Hilary Doxford “I Don’t Want to Give Up Cooking” Tips for Simplifying Your Cooking Awakening and Maintaining Your Five Senses Part Three: SMELL

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The Simple Things In Life by Wendy Mitchell Volume 21, Number 4: Winter, 2017 A Typical Day Living with Mild Cognitive Impairment Hypothermia: A Cold Weather Hazard Awakening and Maintaining Your Five Senses Part Four: TASTE Reading About Research: Things to Keep in Mind Benefits of Mediterranean Diet

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Volume 21, Number 1: Spring, 2016

I wear a lanyard (name- tag) with the Alzheimer Society’s card that reads: “Please be patient, I have Alzheimer's disease.” I wear the lanyard to take control. If I get disoriented ordering a coﬀee, or if I am challenged at the counter trying to pay, the reason is clear, which hopefully lessens the clerk’s stress. It deﬁnitely lessens mine.

I Have A Voice! By Jim Mann Editor’s note: Jim Mann is a retired businessman and an active volunteer and Alzheimer’s advocate. He has been the recipient of numerous awards in Canada for his service to his community. Most recently, he was honored with the Governor General’s Caring Canadian Award for his eﬀorts in raising awareness and reducing stigma around dementia.

Some people—both with dementia and others—question why I wear the lanyard. It’s empowering. I wear it to engage people. If someone wants to talk to me about Alzheimer's or has a question, ask me. Talk to me. Because, quite frankly, there isn’t enough of that happening around the subject of Alzheimer's and related dementias. By not talking about it, dementia doesn’t go away. If we don’t ask questions about it, we won’t get answers. And the stigma won’t change. And the stereotypes will continue. Let me give you an example. We meet for the ﬁrst time. I introduce myself: “My name is Jim Mann. I live in the greater Vancouver area. I am 67 years

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old, and I have Alzheimer's.” What do you see? Who do you see? What is your focus? Do you zero in on my Alzheimer's as you look at me? Do you immediately think that my cognitive abilities are so limited that I couldn’t possibly have anything meaningful to say? Will you speak to Alice, my wife, to look for answers and ignore me? Do you even think I will be able to respond to you?

see me as a fully functioning person and will say I don’t have Alzheimer's. However, I am routinely evaluated by a specialist aﬃliated with the Brain Research Centre at the University of British Columbia. I believe research projects are key to advancing therapies and diagnostic tools for people with Alzheimer's disease and other forms of dementia. Investment into research is critical to our struggle and oﬀers us hope.

My mother had dementia and through that experience, I learned that we need to increase awareness of Alzheimer’s and related dementias. For example not everyone is in their 90s and in the advanced stages of the disease. Unfortunately a lot of people in the ﬁeld of medicine, personal care workers, and the public at large still think that to be the case. People need to be reminded of the early stages when ‘functioning’ and ‘capable’ are key words. An acquaintance of mine was told he has Alzheimer's. The day before his diagnosis, he handled the money for his golf group of buddies. The day after, this responsibility was taken away from him. I recently heard how one family ignored their dad once he was diagnosed with Alzheimer's. They talked around him, over him, and about him in front of him.

I am not content to sit on the sidelines, but this is a double- edged sword when you have dementia. Physically, I look good, but you don’t see me disoriented. You don’t see me asking for or needing assistance. You don’t see me paying only with bills because often I can’t determine the value of coins. You haven’t seen me leave the stove on too many times. You don’t feel my panic when I become lost at the grocery store or in my own neighbourhood. Dementia aﬀects my daily life, especially my short-term memory. That’s why I no longer drive. I recently purchased a watch with both a clock face and digital time so I wouldn’t be confused by the numbers. Telling time is a problem for people living with dementia. And what about family caregivers and others who are impacted? I don’t know what I would do without the care and support of my wife. I can sound like I know what I’m talking about and speak

You get the full-range from people- from being written oﬀ as soon as you’re diagnosed to being challenged on the legitimacy of your diagnosis. Some will

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convincingly on some things, but often, especially in company, I’m glad my wife is with me because I can be 100% incorrect. I’m certainly not always wrong though, and I feel conﬁdent in being an advocate about living with dementia. I have come to realize I have good days and I have bad days. I suppose the same can be said for all of us, except when I have a good day it means I get to exercise my independence, and when I have a bad day, when my mind is too muddled to do much on my own, it means I need support. For those around us, this is an everchanging landscape of eggshells.

I take my role seriously to make a contribution– to make a diﬀerence. I advocate to challenge peoples’ perceptions of dementia. It gives me a sense of purpose. It permits me to have and maintain a meaningful role in life – to be a full participant and not just an observer. And as for communicating, sometimes you can’t shut me up! I’m always ready to talk to an individual or a group. We’re not all victims. We have a life worth living. It may not be the life we would choose, but it’s still a life. So you know what? We’re going to make it ours and make it worthwhile. We’re going to make our mark in the world and be proud of who we are.

We can live positively and well after diagnosis. I have a voice – a legitimate voice – through which I can participate in life’s daily routines and in the community. What do I mean? I write letters to the editor and they get published. I was a full voting member of the Alzheimer Society of Canada Board of Directors and was a board member at the Alzheimer Society of BC for the full six-year term. I serve as a member of the Leadership Group at the Alzheimer Society of British Columbia and am a former Honorary Editor of Insight their newsletter written for people with dementia.

Reaching Out to Others with Memory Loss The following letter is a contribution from participants in the Gathering Place Early Stage Memory Loss Program at Greenwood Senior Center in Seattle, Washington. They are sharing their message as a means of reducing stigma and to let others living with dementia know that they are not alone. It is their wish that this letter be reprinted and distributed to as many people as possible, so do pass it along! Dear friend,

Editor’s note: See http://alzbc.org/Insight-bulletin to read and subscribe to this informative quarterly newsletter.

We are a community of people living successfully with memory loss. We understand that you also have received a

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diagnosis of memory loss. We want to recognize your courage in ﬁnding out what is going on. It is normal to feel disbelief, anger, fear, and denial but know that you are not alone. Our hearts go out to you.

Awakening and Maintaining Your Five Senses Part One: SIGHT We are all familiar with the five senses – sight, hearing, smell, taste, and touch. What may be less known, however, is the importance of the senses in coping with dementia and the ways in which dementia can affect the senses. In the next five issues of Perspectives, we will explore each of senses and the steps you can take to make sure you are keeping them as finely tuned as possible. We begin with sight.

You may want to hide your diagnosis. Many of us did too, but we have found that sharing what we are living with lightens the load and allows us to lessen stigma surrounding memory loss. We urge you not to hide. Connect with others who are living with memory loss, and encourage your family to get support. Acceptance is important. We are all in this together. We have learned to live with our memory loss and still have productive lives with family and friends. We would like to give you hope that you too can live a full life. There will be obstacles to come, but you have an opportunity to give back to your community and yourself, and to experience beauty, happiness, and kindness.

Vision changes may begin in childhood, but become more common as we age. Many people need better lighting and color contrast in order to read or identify objects, or may need glasses or other corrective measures to see clearly. But sight also involves the brain’s ability to interpret or make sense of what we see. With dementia, you may ﬁnd that although your vision is sharp, you might not always recognize what you see. This puzzling symptom is called visual agnosia. Bea describes her experience: “Sometimes what I’m looking for will be lying right in front of me and I won’t see it. I don’t always misplace things; they’re right there, but I just don’t recognize them.”

Sincerely, Walt, Mark, Bob, Sarah. Roger, Ron, Helene, Rick, and Midge Members of the Gathering Place Early Stage Memory Loss Enrichment Program Greenwood Senior Center. Seattle. WA

Anyone can have a similar experience occasionally, but the problem can be more frequent for people with

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dementia and can sometimes include diﬃculty in recognizing people, too. Visual hallucinations – seeing things that aren’t there- or misinterpreting objects can also occur, and is often more common in Lewy Body dementia. For example a shadow on a wall could look like a person. Although these experiences can be upsetting, they are often temporary, are not uncommon, and can occur early on in dementia.

• Use good quality sunglasses to reduce glare when outdoors. • Make sure you have adequate indoor and outdoor lighting. • Use color contrast to help identify objects and spaces. For example place yellow strips on the edges of stairs. • Declutter as much as possible to make it easier to ﬁnd and identify objects.

Some people experience other visual challenges. Three-dimensional objects may look flat so that a dark carpet looks like a hole in the floor. Or it may be hard to see cream-colored food on a white plate. Sometimes it is difficult to judge distance or depth. You may reach for an object and find that your hand lands inches away from it. The height of stairs or a sidewalk curb may be hard to determine and require greater caution when taking your steps. Tell your loved ones and your doctor about any changes in your visual abilities. You are certainly not alone if you have any of these experiences. Some tips for helping to maximize your sense of sight include:

• Exercise your sight. Look at a work of art in a museum or in a book. Describe in detail what you see. • Try to look for beauty in each day!

Research Updates Alzheimer’s Disease Progress Report Available Online A new online report provides an easyto-read overview of recent National Institutes of Health-funded research advances and initiatives in Alzheimer’s disease (AD) and related dementias. Issued by the National Institute on Aging the annual report— 2014-2015 Alzheimer’s Disease Progress Report: Advancing Research Toward a Cure— discusses research momentum, describes research opportunities, and summarizes scientiﬁc advances in areas including:

• Use a walking stick to help better judge distance and depth while on outings. • Have glasses or contact lens prescriptions reviewed annually and get checked for cataracts that can cloud vision.

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• Understanding the biology of AD and related disorders

Evaluating the Eﬀectiveness of

• Identifying genetic inﬂuences on risk for late-onset AD, the most common form

The Imaging Dementia—Evidence for Amyloid Scanning (IDEAS) Study will assess the impact of amyloid positron emission tomography (PET) imaging on outcomes in more than 18,000 Medicare beneﬁciaries across the United States who have mild cognitive impairment (MCI) or dementia of uncertain origin. Researchers seek to demonstrate that amyloid PET brain imaging can help clinicians more eﬀectively and accurately diagnose the cause of cognitive impairment (changes in thinking abilities), provide the most appropriate treatments and recommendations, and improve health outcomes. In addition to assessing the impact of amyloid PET on management of patients with mild cognitive impairment or dementia of uncertain cause, the study will compare medical outcomes for study participants with matched patients not in the study. It is anticipated that the evidence obtained by the IDEAS Study will support insurance reimbursement of amyloid imaging by Medicare and other third-party payers.

Brain Imaging in Diagnosis

• Detecting the earliest Alzheimer’s-related brain changes, including further development of biomarkers to track the onset and progression of AD •Understanding gender and racial diﬀerences in the impact of AD • Stepping up research to enable the design and testing of new drugs •Testing in clinical trials potential new therapies to prevent, delay, or treat AD •Finding new ways to support caregivers The report also includes searchable tables of NIA-funded clinical trials that are testing promising interventions for AD, mild cognitive impairment, age-related cognitive decline, and other dementia-related symptoms. To read the report, see: www.nia.nih.gov/alzheimers/publicati on/2014-2015-alzheimers-disease-progr ess-report/introduction

The IDEAS Study is being conducted by a team led by Dr. Gil Rabinovici, neurologist and professor at the University of California, San Francisco. These dementia specialists nationwide will team with trained radiologists and nuclear medicine physicians at PET

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facilities to order, conduct, and interpret the amyloid PET images. A physician must refer you for enrollment in this study.

care partners, and professionals. Working with a professional moderator and writer, in groups online or in person, clients are able to create their own narrative, expressing their fear, anger, frustration, hope and determination— often with humor and love.

For more information concerning eligibility and the study site locations, see: http://www.ideas-study.org

Ten years ago the ﬁrst participants in To Whom I May Concern took the stage in New York City and shared their experience of living with dementia. Reading from a script based on the stories that the men and women themselves had shared in their Alzheimer’s Support Group, they captured the attention and empathy of the audience that ﬁlled the auditorium. A standing ovation followed by a lively Talkback session ended the performance. It was only the beginning of a powerful project that has changed the conversation about dementia for many people.

To Whom I May Concern An Innovative Theatre Project Gives Voice to People with Alzheimer’s or a Related Disorder By Maureen Matthews

Since that ﬁrst performance in 2006, many more people with dementia have taken to the stage in churches, senior centers, assisted living residences, retreat centers, and conference rooms with audiences of 25 to over 600 people. We have also begun meeting with people online using video conferencing software and have “staged” their stories in webinars and, most recently, on a DVD called This Is My Voice, accompanied by a Discussion Guide to

Theatre performers and their partners with Maureen Matthews (back row, center) To Whom I May Concern® is an interactive theater program designed to give voice to people who have recently been diagnosed with a progressive brain illness such as Alzheimer’s disease. Using their own words and scripting, these individuals share their stories and experiences with audiences made up of family members, peers, friends,

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assist community groups in developing their discussions. And what diﬀerence has To Whom I May Concern made? Lots! For the individuals diagnosed, it is an experience of empowerment that comes when they feel that people are listening:

perspective-changing. As one attendee stated: “This is the ﬁrst time I have heard people speak so freely and explain what it’s like [to live with dementia]. They have changed my attitude… Thank you!” The theatre performances and message can have a powerful impact on students and professionals, as well. A social worker in tears once apologized to the performers for all the times she had been insensitive to the people in her care. The husband of one of the performers stood up and told her how proud he was of her. A doctor responded: “Doctors need to see this!” After a diﬀerent performance before an audience of college students, a young woman who attended shared a comment with the performers:

“To Whom I May Concern really helped my conﬁdence, it helped me explain what was going on in my mind to my family, it gave them, my family, an insight I could never have achieved on my own.” – Chris Roberts (Wales, United Kingdom) A diagnosis of dementia can be very lonely. To Whom I May Concern gives people with dementia a voice and a sense of being part of something bigger - a chance to belong during a time when one feels adrift. Even though we have our struggles, the members of our group are still friends two years after our performance. –Mary (Salt Lake City, Utah)

“Thank you for your courage to share your experience. I’m about to go home for Thanksgiving break and I will see my grandmother. Now I will know to go a bit slower in our conversation at the table so that she will stay included.”

“When I ﬁrst read the lines of To Whom I May Concern, it brought tears to my eyes. I was so moved by it… It tells a story from the eyes of people who have been diagnosed with the disease. It lends us a voice.” –Scott Russell (Connecticut)

People living with dementia are often silenced long before the brain cells die because of the stigma and sidelining that comes with the diagnosis. Participating in To Whom I May Concern helps them ﬁnd their voice and continue living the next chapter of their lives.

For the audience, the opportunity to hear about living with dementia from people diagnosed can be

What’s next? A Facilitator Training Program will soon be available so that

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more communities can create performances of To Whom I May Concern. For more information about how to bring this theatre program to your own community, I hope you will visit our website at http://www.towhomimayconcern.info/ or “like” us on Facebook to stay in touch!

but create a different experience. Count the number of birds you see or make a point to smell and identify the names of flowers or other blooming plants. Visit a local nursery or farmer’s market to take in the colors and smells. Take a camera, look at life through the lens, and take some photos! Warm weather may bring outdoor concerts to your area. Open your ears to some new sounds or simply take a walk or sit outside and pay special attention to all of the different sounds you hear. Spring provides countless ways to engage your senses. Let us hear from you about your own ideas!

Questions and Answers Q. With the warmer weather coming, I know it would be good to get out more, but I don’t really know what to do. Do you have any suggestions? A. Sometimes you don’t have to travel far from home to ﬁnd a new adventure or a stimulating activity. One man and his wife are exploring their own community: “Even though we’ve both lived in our city for many years, my wife and I have decided to try to visit a new site in the area each week. It’s good for both of us. It’s amazing how many parks, little museums, exhibits, and odd oﬀ-the-beaten path places there are to see. We’re having lots of fun.” Part of the couple’s enjoyment is in reading the local newspaper each day to look for these new places or events. Although their outing is usually once a week, each day they discuss new possibilities and enjoy making plans.

Some content for this column is from the book Living Your Best with Early-Stage Alzheimer’s. Available in bookstores or online at amazon.com.

Volume 21, Number 2: Summer, 2016 Two Years Later By Jennifer Snyder Editor’s note: Jennifer’s ﬁrst essay published two years ago in Perspectives can be found at: http://goo.gl/ZqGXrD. She has since moved to a continuing care retirement community. The interesting thing about life is you don’t know what’s next. You think you know what’s going to happen, but you really don’t. I love it that you ﬁnd you’re doing something that you swore

If you live in a small town or rural area, don’t be discouraged by seemingly limited opportunities. You can walk the same walk or visit the same park,

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you’d never do and that you’re not only doing it, but you’re enjoying it! It’s seeing both sides of the coin. I never thought I’d want to live with a bunch of old people but the people I’ve been getting to know are really fun people. One of the lovely things is that I don’t have any feeling about what am I going to do next or feeling bored or lonely. It’s just a feeling of here I am! And it’s nice– no anxiety. That’s what life has taught me. Don't hold on to expectations of what the future might be. It creates limitations in your future if you have a ﬁxed idea about it, when perhaps you don’t even know about other possibilities.

close the door and no one comes in except maybe to remind me of meals or an activity. I feel I have enough independence and although I miss not having a car and being able to jump in it and go where I want to, it’s also very relaxing to not have the decisions– actually to see the positive in not having to make these kinds of decisions or choices. The hardest part was leaving my cat. He was such a good kitty. I could have brought him, but he would have had to live indoors in my apartment and I didn’t want to do that to him. I do miss having a little animal around and I could have one, but I don’t necessarily miss the responsibility. I know how consuming it is. I’d have kitty on my mind all of the time. So maybe it’s time to focus now on human companionship.

My memory is fading so much and I can’t really remember exactly why I decided to move here, but it just happened and it seemed to go smoothly. All of my family on Maui was moving back to the mainland, so we had to decide where I would go. I was feeling disconnected and foggy because I had little stimulus and structure living alone. One of my daughters is ten minutes away from where I live now. When I arrived, my children had moved everything in already and it was so nice to have my house all set up and to see my things. I felt at home right away. I love the beauty of it - the view of the mountains is wonderful, the darling kids at the preschool next door, and being close to my daughter and her family. I have my own space – these two big rooms are mine. I can

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It’s not crowded here, but there are enough people. I’m interested in the other people and what’s going on with them. I don’t feel crippled by people doing things for me whereas in other times in my life, I felt I had to do things for myself. What I’ve tried to learn is to graciously accept help from others – to be thankful and not ﬁght against it. Everyone is mixed in together here, so even if my memory gets worse or I need more help, it will be taken care of without having to move from my apartment. You don’t want to criticize someone else and how they are doing because that could be you. So I don’t have to panic about it or feel like I’d have to hide it if I needed more help.

something happens, someone will be there. So it’s a beautiful subtle thing they have going on– feeling cared for in an unobtrusive way. There is companionship and ease, but you always feel like you are still in control. It’s a good feeling. I don’t feel like people are watching me all of the time to see what I’m doing, but at the same time, they are. If I don’t go to meals, they check on me and want to know if I’m OK. But it’s an art for the person who is giving help to people– to help but not overstep. You still want to have some control. They have to consider the other person. A caregiver has to be willing to give but also to step back, as needed. That’s the tricky part. It’s as simple as asking, “Could I be helpful with that?” Or “Is it alright if I help you with this?” That’s the part of learning with any relationship– how much should I do for you? I make breakfast in my apartment, but usually eat lunch and dinner in the dining room. There is just enough structure here and mealtimes to participate in with other people. You reach a point when you don’t want to cook for yourself anymore or ﬁgure out what you’re going to eat. It’s been gradual – my family has been helping me more and more along the way. But this is an extraordinary place because I’ve always felt it’s so welcoming and open in the dining room. I haven’t felt

Jennifer’s recent painting for grandson’s wedding One of my friends fell this morning and I heard her calling for help. I went out into the hallway but someone was already coming to help her. I don’t ever feel like anyone is interfering, but if

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like a newcomer or out of place, or like I’m butting in. I don’t know how everyone succeeds in that, but they seem to do it. I don’t hear a lot of people saying mean things about other people. But I’m pretty intuitive, so maybe I just don’t ﬁnd myself sitting at a table with negative people. I could have really resented having to go to the dining room for meals, but even when I was living alone I had the radio or television on during meals because I like the company.

sometimes when I’m painting that I have to remember to get dressed and get down to lunch! I love the feeling of the creative muse taking over again. I jump into a stream and get carried along with the joy of creativity. It almost takes the place of a pet in that it’s attention to something outside of me. It didn’t feel complete living alone any more – I really enjoy not only sharing and talking with someone else, but all the little things that come with friendship. I don’t feel any sense of push. At my age, I don’t want to be pushed! There aren’t a lot of “shoulds” like I should be doing this or that. It’s nice to allow everything to just unfold. That may be a part of wisdom that comes with age – not ﬁghting against life but going along with it a bit more. I have a belief that somebody on a diﬀerent level is watching out for me. I have a feeling of my grandfather who raised me and my husband looking out for me and making sure it’s all going OK. The comfort of it is so nice. It’s support, and it’s just right.

It’s important to be in a situation where you can love people and they will accept you and be loving in return. I feel it is a very loving and accepting place here. It’s an open arms feeling. There is opportunity and newness, but nothing you have to do. I’m invited to do a lot of activities, but don’t feel pressure. That would not work for me if I was being told what to do! Hopefully I give out a sense of love, but I need enough quiet time. I lose energy if I’m with people too much – I can feel scattered and depleted. I’m really enjoying being creative and painting again. It’s not that I’m doing masterpieces but it’s just fun! When I ﬁrst moved in, I started out with these coloring books for adults. I hadn’t allowed myself to sit and color in a coloring book since my kids were young, but I used colored pencils in the books and it was fun! Now that I’m more settled, my own creativity is being freed up and I get so obsessed

Reaching Out Around the Globe The experience of Alzheimer’s and related dementias affects individuals, families, and communities in every country on earth. Some countries are rich in resources, while others struggle to meet the educational and support needs of their citizens. Language barriers are often a challenge and it may be difficult to find educational materials

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written in the primary language of each country, or within each country’s unique urban or rural multicultural communities where many languages may be spoken.

Awakening and Maintaining Your Five Senses Part Two: HEARING Over the course of ﬁve issues of Perspectives, we are exploring dementia and each of the ﬁve senses. In our last issue we discussed sight, and in this issue, hearing.

Alzheimer’s Australia provides an excellent example of an organization that is committed to helping people with diverse cultural and language backgrounds. The national organization provides an excellent website with a wealth of information that can be easily downloaded in over 40 languages. Just click onto the language you need to view the available educational resources from this very helpful website. https://goo.gl/sOIrVK

According to a recent statement from the Journal of the American Medical Association, 40 percent of people over 60 have hearing loss and that rises to 80 percent by age 80. Hearing loss can lead to social isolation, reduced activity, and increased risk of depression. The person with hearing loss and those around him or her can become irritable or frustrated with challenges in communication and the need for raised voices or ongoing repeating of phrases. Hearing loss makes the mind work extra hard to understand words or sounds, and there is also evidence that hearing loss can contribute to brain atrophy (shrinkage). Research suggests that the longer a senior lives with uncorrected hearing loss, the less able the brain may be to make sense of sounds. Poor hearing can cause safety issues if you can’t hear a car when crossing the street, a tea kettle whistling on the stove, a meeting with co-workers if you are still employed, or respond to an alarm in the event of an emergency.

Another important resource for international support and services is Alzheimer’s Disease International (ADI). Their website provides links to dementia organizations around the globe where individuals can click onto their country of origin or onto a country that speaks their language to ﬁnd information on a website in their primary language. https://www.alz.co.uk/associations Or see ADI’s “other languages” link at: https://www.alz.co.uk/other-language s.

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Some people with dementia do not have hearing loss; rather they hear the volume of sound, but lose the ability to understand or interpret what they hear. This confusing and frustrating problem is called “receptive aphasia” and is more a problem with the brain than the ears. Sounds come in, but the brain cannot always make sense of the sounds. For example, someone may say to you, “Please pass the salt.” You can hear the words, but don’t know the meaning of them so it’s hard to respond. Or sometimes words or sounds are misinterpreted, so instead of passing the salt, you feel puzzled and do something else entirely unrelated to the request. Aphasia can also aﬀect expression of language. For example, a person may mix up words because it becomes diﬃcult to understand one’s own speech.

your doctor will evaluate you for aphasia. This can help you and your loved ones better understand communication challenges and develop tools for working with them. • Limit background noise during conversations. Turn down the TV, radio, or other distractions. If you eat out, try to ﬁnd quiet restaurants whenever possible. • Socialize with smaller groups so you can better track conversations. • If you don’t understand what someone says, it may not help for the person to speak louder. You may need to have the message repeated or rephrased to make it easier to understand. • Sometimes having others use hand gestures is helpful. For example a care partner can point to the chair when suggesting you sit down.

Some tips for managing and maximizing your sense of hearing include: • Have your hearing checked by an audiologist and wear hearing aides if needed. Be aware that it can take awhile to get used to a hearing aid, or you may need to be reﬁtted or adjusted a few times. Don’t give up!

• Exercise your hearing and your brain by listening to music that you enjoy or taking a walk and noting all of the diﬀerent sounds you hear along the way.

Research Updates • Keep hearing aids stored in the same place so you remember where you left them.

The Need for Diversity in Research Clinical trials are a partnership between researchers and volunteer participants who work together to answer questions about hopeful treatments or

• If you do not have hearing loss, but have communication diﬃculties, see if

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interventions in Alzheimer’s and related dementias. To ensure that answers are correct, these trials need diverse volunteers: women and men, African Americans, Latinos, Native Americans, Asian Americans, people with Alzheimer’s or a family history of the disease, people with conditions that may lead to Alzheimer’s, and healthy volunteers. For example researchers have identified that African-Americans and Hispanics face a significantly higher risk of Alzheimer’s and other dementias. It is important to understand how and why, so it is essential for minority groups to participate in research. Also a medical or social intervention may work differently in different ethnic groups. Without adequate representation, questions about a treatment in a particular group of people may remain unanswered. The National Institutes of Health maintains a comprehensive list of clinical trials related to many medical conditions for people of all ethnic backgrounds. Click on the website, insert your diagnosis, and see what clinical trials may be recruiting in your area. https://clinicaltrials.gov/

results; advances in detection, diagnosis and treatment; and what is state-of-the-art in all aspects of this ever-growing field of research. To read highlights from the 2016 conference held this summer in Toronto, Canada, see: https://www.alz.org/aaic/releases_201 6/wed_300_ET.asp The Effects of Stress on the Brain Feeling highly stressed can increase the likelihood that an elderly person will develop mild cognitive impairment, a condition that often leads to Alzheimer’s disease. In a study led by Richard Lipton MD, and Mindy Katz, MPH, at Albert Einstein College of Medicine and Montefiore Health System, researchers looked at the connection between chronic stress and “amnestic mild cognitive impairment” (aMCI), the most common type of MCI, which is primarily characterized by memory loss. In data collected from 507 participants age 70 or older who were enrolled in the Einstein Aging Study, they found that highly stressed participants were more than twice as likely to become impaired than those who were not. Stress was evaluated using a 14-item questionnaire, the Perceived Stress Scale (PSS). Seventy-one of the 507 participants were diagnosed with aMCI during the study. The greater the participants’ stress level, the greater their risk for developing aMCI.

Annual Alzheimer’s Association International Conference Highlights This annual conference is the world’s largest international gathering of the dementia research community. Scientists from around the world present ﬁndings about clinical trial

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appeal to a wide variety of people. We wanted to provide a safe and supportive environment where people could come and relax and enjoy themselves without worrying about being judged. As one participant with dementia said, “Perhaps what makes this such a wonderful group is that everyone has an opportunity to contribute to the planning and managing of the club.”

There is also research suggesting that stress could hasten the progression of Alzheimer’s in those already diagnosed. Because stress is treatable through medical and lifestyle interventions, the results suggest that detecting and treating stress in older people might help delay or even prevent the onset of Alzheimer’s. If you are concerned about your stress level, contact your doctor or your local Alzheimer’s organization for support or guidance about stress management.

We are all on the same journey and understand what others may be going through. Refreshments are a big part of our meetings and everyone takes a turn bringing some “sweeties” and fruit, and we all have a chance to socialize. We also provide information on educational events, seminars, and opportunities for involvement in research at the University of Waterloo, Ontario, Canada. Many of our group members have been involved in these very worthwhile pursuits.

Memory Boosters Helping Couples Connect By Anne Hopewell

After my husband was diagnosed with Alzheimer’s in 2000, we contacted our local Alzheimer’s Society to learn about this disease. We became involved in education and support groups and what little social activities that were available. Unfortunately there were few structured social activities, so in 2012, with a few other couples we had met on this same journey, we created our own group, Memory Boosters, for people with dementia and their care partners. Memory Boosters meets twice a month in The Villages of Winston Park in Kitchener, Ontario, Canada.

At the beginning of each meeting there is an opportunity for sharing information or discussing an issue that someone is dealing with so we can all be a sounding board and help that individual. One of the men was struggling with giving up his driver’s

We have worked to develop a program that would suit our needs and

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license. He knew the time had come, but needed the peer help and support. He was grateful for this support and in turn, he was able to support others dealing with this diﬃcult issue.

will be a dinner cruise along the Grand River. We are fortunate to live in a diverse community that has so much to oﬀer. Every year we form a team and participate in our local Alzheimer’s Society Walk. Last year, our team came in ﬁrst place for fundraising and one of our members has been the top individual fundraiser for the past 3 years.

After this part of our meeting, we then have an activity or game such as: art projects, singing, bingo, line dancing, cookie decorating, nordic pole walking, bowling, and popular pot lucks. We reminisce and everyone enjoys sharing and getting to know one another better. We plan themed celebrations for special birthdays and anniversaries and holidays including Christmas, Valentine’s Day, St. Patrick’s Day, Halloween, and Oktoberfest with one of our members playing the accordion for us. In the worst part of winter we have a Caribbean Day with a steel band that everyone loves. This year we had a special Family Day so we could share with loved ones what we do at the club. Everyone had a great time and we plan to repeat this annually. Another participant with dementia says, “Memory Boosters has given me an outlet to connect, expand friendships and try some activities I may otherwise not have considered.”

We began as a small group of friends that share a similar experience, but have now grown to nearly 40 members. Our main goal is to have some fun and also make sense of what is happening in our lives. We try to leave our troubles at the door and have some respite. Our participants provide the greatest testimony: “I cannot tell you how much Memory Boosters has enriched our lives. A great group of people to socialize with.” “We don’t have to look anywhere else, we have it all here.” “This has brought some fun back into my life and has inspired me to help others.”

We have also organized outings including local museums, picnics, and hikes at local parks. We have gone to a butterﬂy center and visited two artist’s studios to make pottery and glass fusion pieces. We were amazed at the results! This year we are going on a day trip that

Memory Boosters Social Club has achieved everything it has set out to do and hopefully will continue to do so for many years to come!

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For more information contact visit the Memory Boosters Social Club on Facebook.

Your Poetry In this column, we feature poetry written by a person living with dementia. We thank Bonnie Kraska for the following contribution.

Volume 21, Number 3: Fall, 2016

Untitled

Doing What You Can While You Can

By Bonnie Kraska

By Hilary Doxford Editor’s note: Hilary Doxford volunteers for the Alzheimer’s Society in England as part of their research network. She was nominated by the Society and joined the European Working Group of People with Dementia in October 2014. She is also a member of the World Dementia Council and was the ﬁrst person living with dementia to join in January 2015. She lives with her husband, Peter, and their dog, Tilly, in England.

I wake I walk I wander And I while away the time And in my head I ponder Who am I and what is mine? Did I leave my child behind? Or is she hiding in my mind? Does my child know who she became and are we still one and the same? Is the sleeping child now blind or is she hiding in my mind?

In December 2012, at the age of 53, I was diagnosed with early-onset Alzheimer's disease. Things had started getting hard for me at work. I'd had a pretty intensive one-to-one meeting with somebody I hadn't met before. Then a few weeks later I was at a conference and I could have sworn I had never met that person before. That freaked me out having sat opposite somebody for two hours, having an intense conversation with them and then not recognising them a couple of weeks later.

Did her dreams become my life and were they dreams of fun or strife? Did my life become her dream or did my life stamp out that dream? Do I waken from this dream-road and wonder how it ends? Do I marvel at the wonders or fear the unknown bends? I greet my friend— the me that’s now— Hello my friend Stay with me now! This world is ours There’s much to see

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Also, I found when I was watching television I was losing which person was the goodie and which one was the baddie. I also noticed that with music, I would hear bits of tunes and know I knew the song but I couldn’t continue the tune. So that worried me because I do love music, I do know songs, I do know how tunes go.

A lot of people say, “What's the point of having a diagnosis if there's no cure?” and it does make you wonder. But for me I'm glad I got the diagnosis because it's made me buck my ideas up and you know it’s about living life to the full whilst you can. So if I actually hadn't had that diagnosis, I'd probably carry on struggling at work, not enjoying work because I'm trying to carry on. At least with the diagnosis you can try to make plans for what you are going to do for however long you have got. I know I am young compared to most people who get the diagnosis, but if somebody gets it young I'd say just carry on doing what you want to do. If you want to carry on working, carry on working. It is a wakeup call about life, so live life to the full and count your blessings. It also helps if you can get involved in something like the Alzheimer Society because you become aware of what's going on, what developments there are. If you've got a particular problem, there will be somebody else who has already gone through it. I’ve had a lot of help from the Society just by going on their website.

My doctor sent me for some tests and a brain scan. As a result, I was diagnosed with early onset Alzheimer's. I wasn't surprised because I had suspicions for years that something wasn't right. I didn't want to hear it but was glad there was a reason for why I had been struggling so much at work. I hadn't told my husband, not because we have secrets because we don't. I just didn't want to worry him if there was nothing wrong.

Shortly after I was diagnosed, I was asked for three words to describe how I felt. The ﬁrst was fear. I was scared. It’s not a nice diagnosis to receive. I felt despair. And I felt helpless – didn’t know what to do. But you still have that tinge of hope because if you haven’t got hope, what have you got? But I

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didn't know where that hope was going to come from, or where I was going to go next. Through the Alzheimer’s Society, I started to participate in many research projects. I love being involved in research. I am well looked after and have a purpose and value. I have interesting discussions and am kept aware of the latest research and results. It keeps my brain active and I have a better understanding of my disease. And just maybe I will be one of the lucky ones who is part of the trial that ﬁnds the cure.

What concerns and disappoints me is the number of people with experience in dementia who at conferences will say that the person with dementia speaking could not, in fact, have dementia. It has happened to many of my friends and myself. Very few people will say it to our faces, but will say it to our friends and family members. If they have the knowledge they proclaim, do they not understand the progression of this disease? The early stages are not always visible. But for every 15 minute presentation we give, we have done many hours of preparation to try and be as good as we can be. To those who question us, if you are trying to give me hope, then thank you, but that is not what I hear. I try not to take it personally, but feel I’m being told I am a fraud and a liar. It is not the person with dementia who ‘conﬁrms’ the diagnosis; we only pass on what we have been told. In my case, two separate neurologists have independently told me I have dementia. I know we can be misdiagnosed, but I do not think anyone can give an informed opinion on the basis of hearing a person with dementia talking in public of their experiences.

So, as far as those three words that described how I was feeling when I was diagnosed, my fear has reduced to concern. I’m no longer scared. My despair is now personal happiness. I’m content with my life, but that doesn’t mean I’m accepting the status quo. We still have to move forward with research. I see what’s happening and it gives me great, great hope. One aspect of my voluntary work with the European Working Group of People with Dementia concerns me. I come over as ‘normal’ because I am fortunate in that although my IQ had dropped dramatically the last time I was assessed, I was still above average. This allows me to mask the diﬃculties I now encounter when trying to process information. Does appearing ‘normal’ do more harm than good when trying to gain the support of people who do not understand dementia?

So to those who tell us that we haven’t got dementia, I pray you are right. But please remember, our public face does not reﬂect what goes on behind closed doors or inside our wayward brains. But it is about doing what we can,

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whilst we can because you don't know what's round the corner tomorrow. We live for today and we enjoy it!

• how genes relate to Alzheimer’s disease • what it means if you have a family history of Alzheimer’s

Helpful Resources Understanding Alzheimer’s Genes

• what you can do if you are at increased risk for Alzheimer’s

Many people aﬀected by Alzheimer’s wonder how they developed it or whether it may run in the family. One’s chance of having Alzheimer’s may be higher when certain genes are passed down from a parent. However, having a parent with Alzheimer’s does not necessarily mean that you will develop the disease. Some more rare forms of Alzheimer’s are linked with certain genes that determine much greater risk, especially in cases of younger onset dementia with a strong family history.

• how to obtain more information Read the booklet online or print it out at: https://goo.gl/gzVND1 Speaking Up About Dementia For some people, the diagnosis of Alzheimer’s or a related disorder is a private matter and discussion may be limited to family or close friends. Others, however, ﬁnd beneﬁt to themselves and others by being more open about their diagnosis as a means of reducing isolation, possible stigma, or confusion about memory loss and other symptoms.

The National Institute on Aging (NIA) publishes many resources that can be very informative for families living with Alzheimer’s or a related dementia. These resources can be found under the Health and Aging tab on their website at: https://www.nia.nih.gov/. One of the most recent resources from NIA is Understanding Alzheimer’s Genes: Know Your Family History. This booklet aims to help families understand the role of genetics in Alzheimer’s disease. This booklet will help you learn:

Each time you speak out on behalf of yourself or others with Alzheimer’s or a related disorder, you are being an advocate in raising awareness about dementia. Some may choose to take this advocacy a step further to become involved in their communities locally or even nationally to advance the knowledge, education, and scientiﬁc progress needed to improve the lives of all those aﬀected.

• what genes are

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The Alzheimer Society, British Columbia recently released a very useful and informative 14-page guide for anyone wishing to play a role in bringing attention to dementia issues. Speaking Up About Dementia– A Simple Guide to Raising Your Voice provides a discussion of:

Below is Carol’s letter to Rachael Ray:

Dear Rachael, I love to cook, and I have Alzheimer’s. Due to my symptoms, I have diﬃculty following recipes. This can be incredibly frustrating. My hope is that you could come up with some recipes that might make it easier for people like me to follow. I know your recipes are meant to be simple and easy already. However, I think recipes need to be adapted even more for people with Alzheimer’s.

• what advocacy is • how to speak to others about dementia • how to engage politicians through letter writing or in-person meetings

I started baking and cooking when I was just a little kid. My grandmother and her family were from Louisiana, and they know how to cook down there with lots of delicious spicing. I was always a super-baker. Pies were my specialty, and at fundraisers one of my pies might go for ﬁfty or sixty dollars!

• how social and print media can make a diﬀerence Read or download this excellent guide at:https://goo.gl/BG4nEZ

“I Don’t Want to Give Up Cooking”

Since my diagnosis of Alzheimer’s, I have been struggling with recipes. I struggle with measuring ingredients, remembering what I’ve already put in, and where I am in the recipe. Sometimes I can spend an hour just trying to ﬁnd the right spice in the cupboard. However, I don’t want to give up cooking yet. I want to be able to do it if I choose to. I want that option for myself and for my husband.

Editor’s note: In February 2016, Carol Mothershead, a participant of the early-stage support group at Alzheimer’s and Dementia Alliance of Wisconsin in Madison, wrote the following letter to cooking show celebrity Rachael Ray. Sadly, she did not hear back from Ms. Ray, but Perspectives heard Carol’s voice and we have printed her letter below. We now hope that Carol will hear from fellow readers of Perspectives, too!

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If you have some recipes that are tasty, nutritious, and extremely simple, that would be wonderful for cooks like me, as well as for family members who are caregivers. I think recipes with only a few ingredients that don’t require speciﬁc measurements would be most helpful. At a support group I belong to, we came up with cooking tips for people with Alzheimer’s and the social worker who facilitates the group wrote a handout with our suggestions

Tips for Simplifying Your Cooking Editor’s Note: The following ideas are from Alzheimer’s & Dementia Alliance of Wisconsin early-stage support group members or from staﬀ who work with, and always learn from, them. Don’t let memory loss keep you from cooking tasty, healthy foods for you and your family. Below are some tips to simplify your cooking. Pick and choose what is most helpful for you or come up with your own ideas to simplify.

I am writing this letter with the help of Danielle Thai who facilitates the early-stage support programs I attend through the Alzheimer’s & Dementia Alliance of Wisconsin. These programs bring together people like me who have early dementia who are still very active and who have many interests. We don’t give up our interest in living life to the fullest just because we have Alzheimer’s. My husband and I still take ballroom dancing lessons and participate in dance exhibitions. We don’t want to give up anything until we absolutely have to!

Carol Mothershead, author of letter to Rachael Ray, on left with Danielle Thai, support group facilitator, behind her and friends from the early-stage support group. Find simpler recipes or adapt your favorite recipes to meet your needs • Pick recipes with fewer ingredients and fewer steps.

Thank you for considering our request for recipes adapted for people with Alzheimer’s who like to cook.

• Use more pre-packaged food such as canned beans, frozen vegetables, etc. You can even purchase pre-chopped produce. • Use recipes that don’t require exact measurements (e.g. “to taste”).

Most sincerely, Carol Mothershead (with Danielle Thai, CISW) Alzheimer’s & Dementia Alliance of Wisconsin

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• Use a crockpot or slow cooker to make everything in one pot.

• Some people ﬁnd it helpful to measure the correct amount of each ingredient into separate bowls ahead of time. That way you can double check that you have all the ingredients correctly measured before they are mixed together. Writing the name of each ingredient on a sticky note can help you remember what is in each bowl.

Get your kitchen organized • Keep regularly used kitchen supplies together somewhere easy to reach and see. • Label cabinets and drawers with words or pictures so you know where things go.

Use memory aids • Make a copy of your recipe. As you do each step, put a checkmark beside it so that you know you have completed it.

• Consider getting rid of duplicate utensils and appliances (such as multiple measuring spoons or cups) to reduce clutter and make it easier to ﬁnd what you need.

• As you ﬁnish measuring each ingredient, you can remind yourself that you’ve already used it by: - Putting the item away immediately after measuring - Checking that ingredient oﬀ of your recipe list

• Clearly label canisters and other containers (such as ﬂour, sugar, salt). Prep ahead • Read recipes from beginning to end before cooking so you know what you need.

• Set a timer to time all cooking and baking times.

• Have everything that you need set out before you begin. - Ingredients: Make sure that you have all the ingredients (including spices) before you begin cooking and set them on the counter. - Tools: Bowls, pots, pans, cutting boards,stirring spoons, knives, measuring cups or spoons, etc.

• Find what works best for you and feel free to get creative. One member of our early-stage support group puts the lid on each spice jar and turns the jar upside down immediately after adding it to the recipe to remind her that she’s ﬁnished with it. Consider working together with a friend or family member to prepare meals or have

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someone else prepare some of your meals for you

long- term smoking, head trauma, a history of chronic sinus or respiratory problems, or many other reasons, research suggests that a signiﬁcant decline in the ability to smell or identify odors on certain tests of smell may be one of the earliest symptoms of Alzheimer’s. This may be due, in part, to the anatomy, or structure, of the brain.

• Some families and friends prepare meals to freeze for later. Others take turns cooking and sharing meals together. • There are a variety of services that deliver prepared food directly to your home, everything from pre-packaged frozen dinners to chefs who prepare a week’s worth of meals fresh in your home. Go online and search “home delivered meals.”

We have all experienced links with smell and memory. During the holiday season the smell of a turkey in the oven or the fresh pine scent of a Christmas tree can set off memories or emotions from one’s recent or distance past. When we look at brain anatomy, we find that incoming smells are first processed by the olfactory bulb. This structure starts inside the nose and runs along the bottom of the brain. The olfactory bulb connects with many areas of the brain including the amygdala, a region involved with experiencing emotion, and the hippocampus, a region that plays a significant role in making and storing memories. Scientists know that the hippocampus is one of the first regions of the brain affected by Alzheimer’s and accounts for the loss of short-term memory that is an early symptom. Hence changes in the olfactory bulb and loss of ability to recognize odors or detect smells may reflect very early changes in the nearby hippocampus even before any problems with memory loss are detectable. Researchers are now exploring whether

Awakening and Maintaining Your Five Senses Part Three: SMELL

Over the course of ﬁve issues of Perspectives, we are exploring dementia and each of the ﬁve senses. In our previous two issues we discussed sight and hearing. In this issue, we explore the sense of smell. It is not uncommon for people with dementia to have a diminished sense of smell. Although a reduced sensitivity to smell can occur with normal aging,

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smell tests may play an important role in detecting or diagnosing Mild Cognitive Impairment or the earliest stages of Alzheimer’s when possible treatments may be most helpful.

with routine bathing and laundering of clothes and linens. • If you have loss of smell, don’t let it discourage you from appreciating your other senses. Even if you can’t smell the ﬂowers, you can still hold and touch the bouquet or see it arranged nicely in a vase on your table!

Not everyone with Alzheimer’s has dramatic loss of smell, but it can pose challenges for those who do. Consider the following tips for managing any changes in ability to smell:

Research Updates New Clinical Trials

• Treat any allergies or sinus problems that could reduce your sense of smell.

The MINDSET study is evaluating an investigational treatment (known as RVT-101) for people with mild-tomoderate Alzheimer’s that is taken together with Aricept. In a previous study the combination of RVT-101 and Aricept was observed to beneﬁt study participants’ thinking abilities and some abilities to do daily activities. During this six-month study, participants have a 50% chance of receiving the investigational drug. All participants who complete the six-month study will then have the opportunity to enroll in a 12-month extension study in which all study participants will receive the medication. This study will enroll in sites across the United States and Canada. For more information, see: http://alzheimersglobalstudy.com/en-u s/about

• If you live alone, pay attention to dates on food containers. Don’t keep leftovers in the refrigerator for too long, as it could be difficult to smell spoiled food. • Make sure working smoke detectors are installed throughout your home. • Since loss of smell can affect taste, food may become less interesting or appealing. Take note of any significant or unintended weight loss. • Be careful not to season food with excess salt. Too much salt intake can increase blood pressure and risk of stroke. Experiment with using other herbs and spices that may stimulate the taste buds.

The purpose of these international studies is to evaluate the eﬃcacy and safety of Aducanumab (BIIB037) in persons with Mild Cognitive

• Sometimes loss of smell can become a bit personal. Pay attention to hygiene

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Impairment or early Alzheimer’s disease in over a dozen countries around the world. Aducanumab is being studied to determine whether it can remove amyloid plaques (abnormal protein clumps in the brain) and slow the progression of symptoms. Participants will be randomly assigned to receive a low or high dose of the study drug or a placebo. After an 18-month period, participants can enroll in a study extension during which all participants will be given the drug. Participants will receive monthly infusions of the study drug.

Living life at a slower pace When time is unknown And days become more precious Life takes on a new meaning It’s time to forget life’s stresses. Sat in my chair watching autumn turn into winter….one of life’s simple pleasures. Wendy Mitchell was diagnosed with early-onset Alzheimer’s in July 2014. Some of her writings were featured in Perspectives, Vol. 20, No.4. This poem is reprinted with her permission. You can read her blog at: https://whichmeamitoday.wordpress.com/blo g/

For more information on enrollment, see: https://www.aducanumabclinicaltrials. com/ For a list of locations, see clinicaltrials.gov at: https://goo.gl/l29z4k .

Volume 21, Number 4: Winter, 2017

The Simple Things In Life By Wendy Mitchell

A Typical Day Living with Mild Cognitive Impairment

The early morning mist A bird in the sky A leaf on the ground Laughter all around

Memory loss is a common experience for people living with mild cognitive impairment (MCI) and Alzheimer’s disease. A “Typical Day” is a photography project that allows older adults with MCI to document their lives as a way of communicating about living with memory loss. MCI is a condition in which people have more memory or other thinking problems than normal for their age, but their

Simple acts of gratitude A ‘Thank you’ and a ‘Please’ Don’t cost in terms of ﬁnance Only the time it takes to speak Simple acts of kindness A hug or smiley face Cost nothing more than time itself

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symptoms do not significantly interfere with their everyday activities. MCI can often, but not always, develop into Alzheimer’s or a related disorder. Sometimes it can be difficult to describe experiences of memory loss in words. So participants of the Typical Day project recently expressed themselves through images. Tigist Hailu, MPH, Director for Diversity in Research and Education at the Penn Memory Center in Philadelphia, spearheaded the project in an attempt to be inclusive of the diverse voices and experiences of people living with memory loss. Cameras were provided by the Penn Memory Center for the project. Over the course of a week, twelve participants photographed a typical day for them including the people, places, and objects that now make their daily lives easier or more difficult as they live with MCI.

Gerson acknowledges his reliance on his wife: “I just took a picture of my wife, who is so important to me. She accompanies me wherever I go, and handles the details more so than I can ever do, and I'm really dependent upon her to do that…When she reminds me of something that I don't want to be reminded of, and I think I should know myself, it's diﬃcult for me and it's diﬃcult for her.”

Their photos help to facilitate conversation about living with memory loss. Doris recalls receiving her diagnosis of MCI: “I was more relieved than scared because I suspected it. Matter of fact, I think it helps a lot because I’m aware of it now. I monitor myself.’’ She has a caring network of friends who support one another through companionship, assistance with errands, and shared spirituality. Her photos capture her appreciation for this treasured community.

Dr. Jason Karlawish, Co-Director of the Penn Memory Center, believes that the Typical Day photos and stories provide valuable insight into the quality of life of the person with memory loss. He

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states, “A day that is busy, engaged and safe is arguably better than one that begins and ends with sitting on a couch before a TV, punctuated only by three meals, a snack, and a nap.” Many of the project participants documented the importance of various activities in their daily lives.

know that other people are battling the same problem.” Photography and stories, can also change the way others think about Alzheimer’s disease. Tigist Hailu believes that the Typical Day project helps to humanize the research eﬀorts at the Penn Memory Center. The public and possible research participants see that researchers are interested in the whole person and their experiences of living with memory loss. She is also working with the Healthy Brain Research Network so other centers across the country can contribute to the project in order to expand representation of other populations and/or regions. To learn more about this Network, see: https://www.cdc.gov/aging/healthybr ain/research-network/

Christopher shares his enjoyment of walking: “I like to walk because it frees my mind…I ﬁnd walking in the neighborhood is a way of allowing my mind to throw out some of its limitations.” Joanne feels it is important to keep her mind stimulated. “Reading is good for the memory as far as I'm concerned. It helps…If I read something in the paper and I ﬁnd it to be important, then I reread it. I know I'll probably forget it.” A photo can also provide a moving tribute to an enjoyable activity that is no longer possible due to memory loss. Thomas says, “I played poker until I couldn't remember what they had said; like if they say it's a pass or hold. I wouldn't be able to remember whether the guy said pass or hold. I had to keep asking people what they said, so I retired.” Thomas attends a weekly MCI support group at the Penn Memory Center where he is able to connect with others to share experiences. “Sometimes you hear solutions to things you haven’t thought of…”, he says. “It’s good to

To learn more about Typical Day, view the website at: http://www.mytypicalday.org

Participants of “Typical Day” Photo by professional photographer Damari McBride

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Hypothermia A Cold Weather Hazard

The following resources from the National Institute on Aging provide helpful information on recognizing and preventing hypothermia. Hypothermia: A Cold Weather Hazard is a brief brochure available to read online or download at: https://goo.gl/kJSwNH

Many people living in the Northern Hemisphere face very cold winters and safety hazards associated with freezing temperatures. Hypothermia occurs when your body loses heat faster than it can produce it, resulting in a dangerously low body temperature (below 95 F or 35 C). Low body temperature doesn’t allow your brain and body to work properly and in some cases, can be life-threatening.

Stay Safe in Cold Weather is a comprehensive booklet available at: https://goo.gl/dbeW62

Awakening and Maintaining Your Five Senses Part Four: TASTE

It is especially important that people with dementia take safety precautions in cold weather as they (and older adults in general) are particularly vulnerable to hypothermia. Memory loss can contribute to safety concerns such as getting lost in cold weather, wearing less clothing than necessary, or forgetting to turn up the thermostat in your home. Diabetes, low thyroid, arthritis, Parkinson’s disease, and some medications can also make it diﬃcult to stay warm. Check with your physician to make sure that any of your prescribed or over-the-counter medicines or particular health conditions don’t put you at increased risk for hypothermia.

Over the course of ﬁve issues of Perspectives, we are exploring dementia and each of the ﬁve senses. In our previous three issues we discussed sight, hearing, and smell. In this issue, we explore the sense of taste.

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In the last issue of Perspectives, we discussed how a diminished sense of smell is common for people with Alzheimer’s or a related disorder. The senses of smell and taste are closely linked so if your sense of smell is less sensitive, your sense of taste will be aﬀected, too. An example of the link is when you have a stuﬀy nose or blocked sinus, you may notice that you can’t taste food as well. Sensitivity to taste can also diminish with age, heavy smoking, poor mouth or dental hygiene, and some medications. All of these various factors can contribute to changes in your eating habits.

any changes in your food preferences. The texture of food can also be important for stimulating taste, so be aware of textures that are particularly pleasant. • If you are losing weight, keep nutritious snacks that you enjoy within easy reach. Eating more frequent smaller meals can be more manageable than large meals that may be harder to digest. • Some people with dementia gain weight because they don't recognize the sensation of being full, may forget that they have already eaten, or eat out of boredom. Try to maintain some social, mental, and physical activity every day for overallwell-being so that food isn’t a primary focus or activity. • If you have more interest in sweets, include some that provide nutrition such as fruit ﬂavored yoghurt or smoothies, applesauce, granola, or power bars. You can marinate meats or vegetables in sweet and sour sauce or drizzle a bit of honey on cottage cheese, popcorn, or crackers to enhance their appeal.

It is not uncommon for people with dementia to have certain food cravings. As taste buds become less sensitive, you may be drawn to sweets or fatty foods with more intense flavors. Neurologist Ronald Devere of the Taste and Smell Disorders Clinic in Austin, Texas, notes that our enjoyment of food depends on a number of factors including smell, texture, temperature, flavors, and visual appeal. He suggests that foods that are more bulky, sticky, or thick and creamy stay in the mouth longer and can stimulate all of the taste buds for a longer time (as long as one does not have swallowing difficulties).

• Although more salt can be tempting, use herbs, spices, soup broth, mushrooms, Marmite or Vegemite (common in Great Britain and Australia) or a savory cheese like Parmesan to boost ﬂavor.

Consider the following tips for managing any changes in your sense of taste: • Keep a journal of foods that do and don’t taste good to you so you can track

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• If you wear dentures, make sure they ﬁt well. Poor ﬁtting dentures may limit your interest in eating.

“I grow celebrity tomatoes and I have 20 plants. It takes daily care and I really love it. I don’t remember what I do everyday- not sure if I have a routine.”

• Watch out for rancid foods in your refrigerator. A poor sense of taste (and smell) makes it harder to detect them.

“I watch the news and stay engaged with political events. I also love working on my 1955 De Soto.”

• If you are losing interest in food, try to make eating a social activity so that you eat with others in a calm environment that supports some of the positive traditions around sharing a meal together.

“I help with a remodeling project and visit with my neighbor’s dogs.” “I like to go out into my yard everyday and enjoy the garden. Once a week I look forward to Tuesday night pizza with my old high school friends at Filippi’s.”

BRAINSTORMING Our cover article discussing the “Typical Day” project inspired us to ask people living with memory loss the question: What routines or events do you look forward to every day?

“Keeping up with the news. I read the New York Times every morning.” “I collect stamps and I make bookmarks.”

Here are some of their replies: “Seeing the sun come up!”

“Following the Warriors!” (A professional basketball team based in Oakland, California.)

“I look forward to my morning routine – coﬀee in bed, meditating, journaling, prayer. It sets a positive tone for the day.”

“Volunteering for the Alzheimer’s Association.”

Hobbies and Activities “Eating chocolate after dinner!” “I live in an Alzheimer’s place and I have a job taking care of the horses everyday. I used to ride my bicycle daily for 50 miles. Now I have to wait for someone to go with me because I can’t go out on my own.”

Exercise “I go to the gym ﬁve days a week and work out. If it wasn’t for working out I wouldn’t be able to survive.

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Working out every day lifts the fog in my brain.”

How would you answer the question?

“I take the dog out for a walk every day by myself. I try to remember the day of the week and then I get the newspaper to check and see if I am right. Then I read it.”

Editor’s note: We are grateful to early-stage memory loss support group participants from the Shiley-Marcos Alzheimer’s Disease Research Center in San Diego and the Alzheimer’s Association, Northern California support group sites for their answers to the question.

“Daily exercise. I run, hike, or ride my bike every day at the same time.”

Reading About Research: Things to Keep in Mind

“I walk regularly – it gives me a chance to enjoy nature. I appreciate the beauty of my surroundings. I try to write every day. It’s very important. I’m writing my story and it’s helped a lot. Getting out in public makes me feel alive.”

Editor’s note: We are grateful to the Alzheimer Society of B.C. for permission to reprint the following article. It seems like we hear about a new study that reports exciting progress in dementia research almost every week. We hear about these “breakthroughs” on the internet, in newspapers, and magazines. However, the reports on these studies may not tell the whole story. So how do you know what to believe?

“I love my cats and walking on the beach.” Social and Family Relationships “Checking my Facebook page.” “Spending time with my spouse and loved ones.”

It is important to be critical when you read or hear about new research. There are several things to keep in mind when thinking about how reliable a study may be. Here we share information to help you understand and interpret the results of research studies:

“Volunteering for the Alzheimer’s Association.” “Spending time with good friends!” “Online dating!” “I love my routine of walking the dogs, meeting up with neighbors, and playing with the kids in my neighborhood.”

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WHAT IS THE SOURCE?

out with a variety of small animals, such as mice, to determine the effects of the drug. However, testing something using animals does not mean that the same results will be found when the same test is conducted with humans. The media may widely report on a study that is promising, but only in the early stages of testing on animals. If the study has not moved to testing in humans, these results may be exciting, but years of more studies are required before this could be determined effective or ineffective as a possible treatment.

Anyone with an opinion can write an article on a web page, but credible research is published in scientific magazines or peer-reviewed journals (publications reviewed by professionals working in the same field). A good source could be a government web page or scientific magazine. A less credible source could be a magazine or website written by someone with no relevant qualifications. WHO DID THE RESEARCH?

HOW MANY PEOPLE ARE IN THE STUDY?

Legitimate research articles always state the name of the researchers, their credentials, the organization where they work, when the research was done and where the research study was originally published. A reliable study would likely come from researchers who are associated with a respected organization or educational institution and have experience in the area they are writing about. For example, a trustworthy researcher could be a professor from a university who specializes in brain research. A less credible person could be a celebrity who does not have medical or research training.

The higher the number of participants in a clinical study, the more likely the results will represent the larger population being studied. For example, a study done with only 10 people who have a diagnosis of Alzheimer’s cannot claim to represent all people living with the disease. It may, however, suggest a potential direction for future research. WHO FUNDED THE STUDY? If the organization that funds the study has something to gain or lose from the results (like having a product or medication approved or rejected), there is more risk for bias. Researchers or companies may be tempted to omit negative results or even exaggerate ﬁndings. For example, a supplement company may endorse a product as a “miracle cure” even though their claim

IS IT AN ANIMAL OR HUMAN STUDY? There are various steps involved in developing an eﬀective treatment for a disease. For example, when developing a drug, laboratory tests are ﬁrst carried

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is based on a faulty study or no study at all. Often, if it sounds too good to be true, it probably is. Note that a reputable journal requires authors to declare any conﬂicts of interest.

the brain from vascular or cardiac disease.

Helpful Resource Lewy Body Dementia: State of the Science

ARE THERE OTHER STUDIES THAT SUPPORT THE RESULTS?

There are many forms of dementia. Although Alzheimer’s disease accounts for a majority of cases, some experts estimate that Lewy Body Dementia is the second most common form of dementia. Lewy Body Dementia is an umbrella term for two diagnoses: “Dementia with Lewy bodies” (DLB) and “Parkinson’s Disease Dementia” (PDD). The Lewy Body Dementia Association’s report, Lewy Body Dementia: The State of the Science, focuses on DLB. This form of dementia impairs thinking, movement, behavior, sleep, and certain autonomic processes in the body, such as those controlling heart rate, blood pressure, bladder, and gut. Lewy Body Dementia: The State of the Science provides an easyto read overview of key major ﬁndings to date in LBD research. The report also highlights opportunities to drive research progress forward.

One experiment is rarely enough. Many studies are needed on one topic to know we can trust the results. When enough studies have been done, researchers can combine all of these results to look for patterns and draw conclusions.

Beneﬁts of Mediterranean Diet A study of over 400 seniors in Scotland who did not have dementia found that those who more closely followed a Mediterranean diet rich in fruit, vegetables, whole grains, beans, and olive oil, and with limited red meat, sugar, or saturated fat had greater brain volume over time. Normal aging can reduce brain volume, but this type of healthy eating may provide some longer-term protection. The study did not suggest that a Mediterranean diet could prevent or treat dementia. However, much evidence has pointed to the likely beneﬁts of this heart-healthy diet on the brain by improving cholesterol and blood sugar levels and overall blood vessel health. Although the evidence speaks to prevention, if you have dementia, adhering to the principles of this diet may help to prevent further damage to

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For those who are interested in reading an abbreviated and condensed version of the report, there is also a two-page summary available that highlights key research opportunities identiﬁed in the comprehensive more report. Both reports are available to read or download at: https://www.lbda.org/StateoftheScienc e

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Volume 22, Number 1: Spring, 2017 What’s Next, God? By Reverend Cynthia Huling Hummel A Caribbean Cruise for People with Dementia and Their Care Partners: November 11th-18th, 2017 Travel Strategies and Tips Awakening and Maintaining Your Five Senses Part Five: TOUCH “AROMA DE CAFÉ”: The First Spanish-Speaking Memory Café in Massachusetts Volume 22, Number 2: Summer, 2017 Finding a New Lease on Life by Mary Gretsinger Too Good to be True? My Happy Book: A Wonderful Idea from Cynthia Guzman by Kristin Einberger Learning To Be “Good Enough”: MemoryWorks® at CaringKind by Maria Mursch, LMSW and Geri Taylor, RN, MPH Letter to the Editor Volume 22, Number 3: Fall, 2017

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Three Things I Learned About Me and My Lewy Body Dementia While on Vacation by Mike Oliver Caregiver? Care Partner? Carer?: What’s in a Name? Using Storytelling to Give Voice, Find Connections, and Change Perceptions by Lauren Dowden, MSW, LCSW

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research. Thanks to many tests, which included PET scans, MRIs, a spinal tap, and many cognitive tests, I ﬁnally had an answer. I was diagnosed with amnestic mild cognitive impairment (MCI) likely due to the earliest signs of Alzheimer’s disease.

Volume 22, Number 1: Spring, 2017 What’s Next, God? By Reverend Cynthia Huling Hummel I have a strong family history of Alzheimer’s. My mother and her brother had Alzheimer’s, and their mother (my grandmother) had some form of dementia. I started experiencing memory problems in my 50s. I had problems with names, with remembering faces, or remembering what I read in books. I wrote everything down and checked it oﬀ because otherwise I couldn’t remember if I had actually done the tasks. I felt totally defeated when I couldn’t remember the books of the bible. Heck, even the third graders in my church could do that.

In speaking to my doctors and talking about the probable progression, I made a decision to leave full time ministry, but it broke my heart! I was devastated because I loved being a pastor, but the reality was that I couldn’t do it anymore. But when adversity strikes, we can be bitter or we can be better by looking for the blessings I can’t read books any longer, but I can still read newspaper articles or short stories. So I gave away over 500 books when I left the ministry. I couldn’t remember them and they just reminded me of my disability instead of my ability. I try to focus on my abilities. – what I still can do, not what I can’t do. There are lots of things we can’t do as our lives change and we age, so let’s focus on what we can do.

In 2010, I decided to enroll in the Alzheimer’s Disease Neuroimaging Initiative (ADNI) through the University of Rochester. (Editor’s note: See http://www.adni-info.org/). I was hoping that the study might not only help me understand what was going on with my brain but also advance

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When we get bad news, it is tempting at times to wonder, "Why is this happening to ME?" Chaplain David Martin, Director of Pastoral Care at Robert Packer Hospital wrote, “Rather than asking, ‘Why me,’ the better question to be asking is: ‘What now?’ How is God going to use this adversity?” I'm going to have to get a tee- shirt printed that says, "What’s Next, God?" on it. A woman in my church named Bertie said that God was clearing my plate so that I could have a new ministry. Shifting gears now, my new ministry is Alzheimer’s.

feeling sorry for ourselves, that everyone has their cross to bear, and that into every life a little rain must fall. She taught us to step up to a challenge, and do what we could do to make a diﬀerence. I could sit back and wait for someone else to do something or do it myself. So I decided to volunteer for the Alzheimer’s Association. I trained to be a peer-to-peer educator and a support group facilitator. I volunteered to help with the caregiver retreat and to be a speaker in and around my community to let people know about the programs and services available through the Alzheimer’s Association. In 2015, I was selected to serve as one of 12 National Early-Stage Advisors for the Alzheimer’s Association for a year’s term and to be a voice for those living with Alzheimer’s. I went to a clinic that the doctor recommended for people with brain injuries that helps people who are cognitively challenged to live independently by making adjustments. So part of this is learning to adjust to our reality. I keep a very detailed calendar. I send myself email and text messages. I leave myself voice messages. I have lots of diﬀerent ways to cue myself to remember things. I set the alarm on my phone with a message because I lose track of time. I’ll use the kitchen timer. I have a sign on my door of all the things I have to remember before I leave the house. Some days I

I have started a new chapter in my life. I saw an ad in the newspaper for an 8-week class through the Alzheimer’s Association and so I signed up. When I got there, I sat in the parking lot and I cried. I was feeling so sorry for myself and my situation. But I had an epiphany thanks to my mom and the lessons she imparted to us - lessons about not

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have good days and some days I trip up over my own tongue. It’s sort of like a faulty switch or wire in a lamp. You go to turn it on and the lamp doesn’t come on and then you jiggle the wire a little bit.

being out with my friends, the noise level often stresses me out. I sometimes have to disappear into a quiet room to escape from the commotion. I get agitated when the conversation is happening over a loud TV program, radio broadcast, or in a noisy environment like a restaurant. Turn oﬀ the background entertainment and dial things down for the person with dementia.

The only way that we will ﬁnd a cure for Alzheimer’s is to fund research—and for individuals to step up and participate in research.I am now in the seventh year of the ADNI study. I learned last year, that I have an abnormal tau protein in my brain and my diagnosis was changed from MCI to Alzheimer’s. So I feel even more motivated and energized to do what I can, for as long as I can, to help as many as I can. It’s my mission. It’s what I am called to do. Sometimes well-meaning people will say, “Oh you are so brave.” Oh please! I’m not really brave, but I am bold. I know that what I do can, and will, make a diﬀerence. I have two grown children and one of the ways we’ve dealt with Alzheimer’s as a family is that we’ve talked about it openly and made plans. We’ve talked about end of life issues. Too often people don't want to have these discussions.

Over the years, I have observed care partners taking on tasks that the person with dementia used to handle. There is a balance between being supportive and taking over too soon. When care partners take over something that the person with dementia can do, I believe that unintentionally sends a message “you are no longer capable" and eventually the person with dementia loses that skill or ability. Look for clues on when to step in and help. Otherwise, you may crush our spirit. Don't answer for us. Give us the time to answer questions directed at us. Yes, it may take us longer. People with Alzheimer's need to feel valued. We need to feel that we still make a diﬀerence. When we help others, we help ourselves.

One of the things to be aware of if you have a loved one with Alzheimer’s is to keep an environment that is calmer. Many who live with Alzheimer’s cannot take a lot of noise. As much as I love family gatherings and

I’m praying all the time for the people I love, for my family and friends, and for a cure. But it’s not enough to pray for it. We are called to partner with God and do what we can. For me that means participating in clinical trials. For

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others it might be putting our faith into action – giving respite to a neighbor who needs an hour to go out shopping and sitting with their spouse who has Alzheimer’s. We need to invite people with cognitive diﬃculties to be part of our faith services, to reach out to someone who may be having memory problems – to be a person who lives out their faith by walking with someone on this journey.

discussion panels, and Memory Cafés where participants socialize and discuss a range of subjects. Lori Le Bay describes her intended experience as one where participants “hear others’ dreams, struggles, and joys while feeling a true sense of comfort knowing that others understand, accept, and support you.” The cruise leaves from Fort Lauderdale, Florida and stops include the Bahamas, Puerto Rico, St. Thomas, and a private island, Half Moon Cay. To read more about this Caribbean Cruise, see the Alzheimer’s Speaks website at: https://alzheimersspeaks.com/cruisewith-us

I am a fighter and I am doing everything that I can to fight this disease. My goal is to raise money for research and for support for those of us who have been diagnosed. Together we can make a difference. Together we will end Alzheimer’s!

For more information about pricing, details of the itinerary, and registration, contact Kathy Shoaf at 219-608-2002 or Kathy.shoaf@cruiseplanners.com.

A Caribbean Cruise for People with Dementia and Their Care Partners: November 11th-18th, 2017

Travel Strategies and Tips

Radio host, Lori La Bay, founder of “Alzheimer’s Speaks” is coordinating a unique seven-day symposium and cruise ﬁlled with fun, life lessons, coping skills, and insights to assist all on board with understanding and meeting the needs of those living with dementia. During this cruise, participants will get to know others with dementia and their care partners and hear tips and tricks for living graciously from both professionals and those diagnosed. On-board programs include morning meditations, music therapy sessions,

Travel is a meaningful activity for many people with Alzheimer’s or a related disorder. “When I travel to a new place, it takes my mind oﬀ of all my worries,” says Al. “I see new things and have diﬀerent kinds of experiences than I do at home. I feel part of something bigger than my usual little world.” Alzheimer’s may have little impact on your enjoyment of travel but you might need to modify plans somewhat. Memory challenges and being out of

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your normal routines increases your risk of losing things or becoming fatigued or disoriented. Many people continue to travel on longer vacations or tour foreign countries, but if such trips become too challenging, shorter weekend trips can be satisfying. You may enjoy a visit to a familiar destination such as the home of family or close friends. Consider taking a few small trips to see how you adjust before embarking on a longer trip to an unfamiliar place.

•Consider wearing a watch that includes GPS tracking so a loved one can trace your location if needed. If you carry a phone many cell phones have this tracking option, as well.

When you plan for travel the following tips may be helpful: •Bring a nightlight for your hotel bathroom so you can ﬁnd your way to the bathroom more easily in the dark. •Pack lightly! Too many items and bags create more opportunities to lose things.

• Simplify your travel itinerary. See fewer places in greater detail so you have more time to get accustomed to new surroundings. Some people enjoy small cruise ships because the boat provides a consistent place for sleeping and eating with the opportunity to dock at diﬀerent ports for day trips.

•Ask your doctor about a mild sleep aide to use if needed. Disrupted sleep and jet lag can increase confusion and disorientation. Do not use over the counter sleep aides without a doctor’s approval as they can increase confusion.

•Schedule in “down time” during your trip when you are not on the go and can rest.

•Drink plenty of ﬂuids. Travel (even in cool climates) can be dehydrating resulting in worsened memory and confusion.

•Have identiﬁcation with you at all times. Check with your local Alzheimer’s organization for programs to enroll in such as Medic-Alert/Safe Return so you can receive assistance if you get lost or become separated from your group.

•Keep a simple diary or take photographs to help you recall each day’s events and help you recall your trip when you return home.

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•Write good old-fashioned postcards to friends and family. Ask them to keep them for you so you can have them as mementos upon your return home.

so it is important not to overlook this important sense. Tiffany Field, PhD and colleagues reviewed research that looked at the effects of massage therapy on the body’s bio-chemistry. They found that in many different medical conditions and stressful life experiences, massage has been shown to reduce stress by decreasing levels of the stress hormone, cortisol. Even the simple act of holding hands can reduce cortisol levels. Lowered cortisol can help one relax while also improving sleep quality. Even receiving a brief hand massage has been shown to increase a person’s levels of serotonin and dopamine, neurochemicals that regulate mood, reduce anxiety and irritability, and promote feelings of calm.

•Consider telling other travelers or tour guides that you have Alzheimer’s or a related disorder, or simply that you have memory problems. This may put everyone more at ease and allow others to help you if needed. •Bon Voyage! This article is reprinted from Living Your Best with Early-Stage Alzheimer’s by Lisa Snyder. Available at: https://goo.gl/0sIB6x

Awakening and Maintaining Your Five Senses Part Five: TOUCH

Not all touch is a positive experience, however. Certain health conditions can impact the sense of touch including poor blood circulation, some neurological disorders, and diabetes. Also, skin becomes drier and more fragile as we age, so touch may need to be gentler or can incorporate soothing or hydrating skin lotion. As dementia advances, it may be harder for a person to verbally describe pain or unpleasant sensations, and it is important for care partners to be sensitive to any body language or facial expression that may indicate pain.

Over the course of five issues of Perspectives, we have been exploring dementia and each of the five senses. In our previous four issues we discussed sight, hearing, smell, and taste. In this final article in the series, we explore the sense of touch. Touch is the first sense to develop in the womb and may be one of the most enduring of the five senses well into late life. Touch can be a powerful form of communication, and persons experiencing any stage of dementia do not lose their ability to respond to caring touch. Our sense of touch is engaged throughout the day and night,

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Consider the following tips for engaging your sense of touch: • Reach out and touch while outdoors (while paying attention to avoid toxic or spiny plants). Is there soft new growth on a bush, textured bark on a tree, or a welcoming lawn to sit on in a park?

experiences that are unpleasant? If so, how can those be reduced or modiﬁed?

Research Updates Phone-Based Study Recruiting People with Dementia with Lewy Bodies and Caregivers The purpose of this study is to get input from those that have dementia with Lewy bodies (DLB) and their care partners on certain study questionnaires. The questionnaires are used in clinical trials to assess recent symptoms that may aﬀect the behavior of those living with the condition.

• Don’t underestimate the simple act of holding hands with a loved one while out on a walk or watching a movie together on the couch. • Research suggests that petting a dog or cat can reduce blood pressure and have a calming eﬀect. If you don’t own a pet, some communities have visiting pet therapy programs. Or a neighbor’s friendly dog might enjoy the attention! • Consider working with a licensed massage therapist who can do gentle bodywork to reduce any stress and evaluate any areas of pain. Take care of your care partner and encourage him or her to seek massage therapy as needed, too! • Have a loved one place some small familiar objects of varied textures in a bag. Close your eyes and reach into the bag. Pick an object and try to identify it just by touch. How does it feel?

A person with DLB and their care partner will participate in two telephone interviews (and an optional third telephone interview) which can be done from their own home. Each telephone interview will take one-to-two hours to complete. There is no medical treatment involved in this study. Participant pairs

• Think about the many ways you experience touch each day. What experiences are pleasant? How might they happen more often? Are there

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will receive a $100 payment ($50 each) to compensate for their time for two interviews, or a $200 payment ($100 each) to compensate for their time for three interviews.

Congress Approves Increased Funding for Dementia Research Bipartisan members of Congress recently approved an additional $400 million in funding to the National Institute on Aging (NIA) for Alzheimer’s related research as part of a $2 billion increase in this year’s National Institutes of Health (NIH) budget. This encouraging and essential support of Alzheimer’s research does not, however, address the Trump administration’s request to cut National Institutes of Health (NIH) funding by 18% in 2018. NIA is one of the 27 Institutes and Centers of the NIH and is the primary Federal agency supporting advances in Alzheimer’s research across the country. https://www.nia.nih.gov/. NIA also oversees Alzheimer’s Disease Education and Referral (ADEAR) that is focused on education and support for people with dementia and their families. See ADEAR’s informative website at: https://www.nia.nih.gov/alzheimers

Effects of Diet Drinks on the Brain Recent data derived from the Framingham Heart Study and published by Matthew Pase, MD and colleagues at Boston University has found that people who drink sugary beverages frequently are more likely to have poorer memory, smaller overall brain volume, and a significantly smaller hippocampus (a region of the brain responsible for memory). Their follow-up study was more specific in the effects of diet sodas on the brain. Dr. Pase states, “We also found that people drinking diet soda daily were almost three times as likely to develop stroke and dementia. This included a higher risk of ischemic stroke, where blood vessels in the brain become obstructed and Alzheimer’s disease dementia, the most common form of dementia.” Although the researchers suggest that people should be cautious about regularly consuming either diet sodas or sugary beverages, future studies are needed to test whether giving people artificial sweeteners causes adverse effects on the brain. Reference: Boston University School of Medicine website

“AROMA DE CAFÉ” The First Spanish-Speaking Memory Café in Massachusetts We thank Martha Medina and Angeline García, facilitators of Aroma de Café, for generously sharing their experience in order to give others an example of a Spanish-speaking café. We also recognize the vision and hard work of the Executive Director of the Lawrence Council

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on Aging, Martha Velez, and her colleague Laura Alefantis, for bringing this café into being.

Finding Spanish-speaking elders and their care partners who would be appropriate participants was not diﬃcult, since many attend the Senior Center for other programs. Our ongoing struggle is around the stigma attached to Alzheimer’s that complicates our outreach eﬀorts. Culturally, Latinos are often private people, especially about Alzheimer’s or dementia. These are treated as a “family matter” to be dealt with in the home, and families rarely seek outside support.

The Lawrence Council on Aging started the first Latino Memory Café through a grant given by the Massachusetts Association of Councils on Aging (MCOA) at the Lawrence Senior Center on July 21, 2016 with five participants with dementia and their caregivers. In keeping with the cultural theme, we decided to call our café “Aroma de Café” (The Aroma of Coffee). The community has come to know and respect the Lawrence Senior Center for its warm, welcoming atmosphere that provides a supportive, diverse, and safe environment for elders, their families, and caretakers. The Senior Center is centrally located in the heart of Boston, surrounded by elder housing. There is access to public transportation for anyone that wishes to attend. Currently, the majority of elders that attend the Senior Center are primarily Latino; however the Senior Center strives to offer a place that is inviting, culturally sensitive, and inclusive to everyone who enters through its doors.

This is why it is important to offer Aroma de Café at the Senior Center, a place that our Latino elders and their family members have already familiarized themselves with through other daily events and programs. Many have established relationships with staff, volunteers, and other elders that likely were developed before any symptoms of Alzheimer’s began to surface. Our “Aroma de Café” has a unique atmosphere due to the high level of family participation. We also think it could be beneficial for Personal Care Attendants and Home Health Aides to participate in these activities with their clients. Aroma de Café meets once a month for two hours. Time is split between doing a facilitated activity and informal socializing. Typical activities are based in the creative arts, such as making collages, storytelling, or dancing. The

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creative arts utilize brain functions that tend to endure as dementia advances. Because there is no right or wrong way to do them, they encourage participants to feel successful. The focus is on joy, connection, and what the person can do. The rule of thumb in our café is that staﬀ and volunteers don’t raise the topic of dementia unless guests do. This way the door is open to guests who have not been diagnosed, do not accept their diagnosis, or simply need a break from thinking about it.

her embrace a new attitude toward life. We are grateful to Mary and the Alzheimer Society of B.C. for the opportunity to reprint her message from the Insight bulletin in this issue of Perspectives. Has your outlook changed since you were diagnosed with dementia? When I was ﬁrst diagnosed, I concluded that my life was over. I went to bed for four days and cried for about that long. But then I thought about my husband, children and grandchildren and realized that this was a defeatist’s thinking. I am no longer upset by a label. The main thing for me was to get over the shame – to realize that’s just bologna.

A Spanish language toolkit for developing your own memory café can be found at: http://www.jfcsboston.org/GuiaCafeD eMemoria You can ﬁnd the toolkit in English at: http://www.jfcsboston.org/MemoryCa feToolkit

Volume 22, Number 2: Summer, 2017 Finding a New Lease on Life By Mary Gretsinger Editor’s note: Three years ago, Mary Gretsinger, a retired teacher, was diagnosed with Alzheimer’s disease at the age of 66. She resides in British Columbia, Canada and was interviewed for “Insight – A Bulletin for People Living with Dementia” published by the Alzheimer Society of B.C. Mary shared how her love for playing the violin, walking, and her family have helped

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Did anything else help you cope with your initial feelings?

out there, I start thinking, “Boy it’s a beautiful day.” How has your family supported you since your diagnosis?

I have played the violin since I was a child. One day after my diagnosis, I picked up my violin and played the very same concerto I had played at the Queen Elizabeth Theatre in Vancouver when I was just 16 years old. This experience showed me that I have a lot of living to do.

After my diagnosis, we had a family meeting with my husband, my children and grandchildren. My family now knows it’s okay to help me if I am having problems remembering. It also doesn’t hurt for the children to learn why granny might be trying to remember something and she can’t. My youngest grandchild asked me one day “Did you forget anything today granny?” Children are taught to be compassionate.

I read somewhere that music memory stays with you for a very long time. What good news to old musicians like me! Now, I am playing my violin more and my husband has even recorded tapes of me playing to share with friends and various dementia support groups. My drug of choice is the violin. If I’m feeling anxious, I pick up my ﬁddle. While I’m playing, I don’t have Alzheimer’s disease. I am enjoying life like I have never enjoyed it before. I consider my diagnosis a gift to me now, even though I sure didn’t feel that way in the ﬁrst four days after my diagnosis.

Do you have anything else you would like to share with people who have dementia? Another great joy of mine is gardening. I’ve been trying to grow Shasta daisies forever, and yesterday, my ﬁrst Shasta daisy arrived in my yard. My message to others is to keep growing Shasta daisies – if you will. I want people to know that dementia is not the end of the world, it’s just something that has been given to us.

What other activities do you enjoy? I still keep physically active. Walking is almost more important than music for me…but not quite! I started walking for mood and ﬁtness in 2006 and as of today, I’ve walked 10,852 kilometers! When I take my ﬁrst step out the door, sometimes I start out thinking, “I can’t handle this disease” and about halfway

It hasn’t destroyed my gardening. It hasn’t stopped me from playing the violin, or playing with the grandkids, or going camping and doing all kinds of things. I have a favourite line from a poem by Robert Browning that I have written down in my notebook: “For sudden the worst turns the best into the

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brave.” There are things I can’t do with Alzheimer’s disease, but that’s not the end of the world, and it’s making me brave.

before you buy it. Don’t let a salesperson talk you into making a snap decision. Look for red ﬂags in ads or promotional material that:

Insight is a quarterly educational bulletin written for and by people with dementia published by the Alzheimer Society of B.C. To read back issues and to subscribe to the bulletin, see: https://goo.gl/xQNsBQ

•Promise a quick or painless cure •Claim the product is made from a special, secret, or ancient formula •Use statements or unproven case histories from so-called satisﬁed patients

Too Good to be True? Editor’s note: The following content is edited from a National Institute on Aging (NIA) publication, “Beware of Health Scams.” To read or order any of the many informative publications available free from NIA see: https://order.nia.nih.gov/view-all-publicatio ns

•Claim to cure a wide range of ailments •Claim to cure a disease (such as Alzheimer’s or Arthritis) that hasn’t been cured by medical science •Promise a no-risk, money back guarantee

Today, there are many ways to sell untested products – online, TV, radio, magazines, and newspapers are just a few examples. Actors portray doctors and patients on infomercials. It can be had to tell what’s an ad. The problem can be serious. Untested remedies may be harmful. They may get in the way of medicines prescribed by your doctor or be expensive and a waste of money. Question what you see or hear in ads or online. Media do not always check to make sure the claims in their ads are true or say if a celebrity is being paid to endorse a product. Ask your healthcare provider or pharmacist about a product

•Oﬀer an additional free gift or more of the product as a special promotion •Require advance payment and claim there is a limited supply of the product

My Happy Book A Wonderful Idea from Cynthia Guzman by Kristin Einberger Cynthia Guzman was diagnosed with dementia on her 63rd birthday. Over the course of four years, she was eventually diagnosed with Lewy body dementia. Cynthia has advocated for

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those with dementia and their caregivers ever since her diagnosis. Much of this advocacy has been done through the Alzheimer’s Association. They have given Cynthia a voice, an audience, and a purpose in life. She served as an Early Stage Advisor for the Association for a year. Cynthia also traveled to Washington, D.C. for the 4th year in a row in April 2016, to speak with legislators during the National Advocacy Forum. Congressman Mike Thompson (D-CA) was so impressed with Cynthia’s work that he named her as Woman of the Year in Napa County, California.

advocate for a cure so that future generations will live in a world without dementia. Cynthia recently shared her idea for a Happy Book with me and we wanted to pass along this idea in the hope that it will bring some moments of joy to others: One very special Thanksgiving celebrating with family and friends at my son’s house, I took quite a few photos, hoping to remember this wonderful day. Later, I put them all in a book. When I looked at the book later that day, it brought back wonderful memories and made me feel so good. I continue to look at this book often. I add photos that are important to me, that make me happy, that bring joy to my life. I’m choosy about the photos, as I want them to all be the most special – people and events that make me happy now and that can be used by those around me as my disease progresses to share with me. I got to thinking – if a simple book like this makes me so happy, it would surely do the same for others dealing with dementia. It’s an easy thing to put together and the rewards can be huge. It is a visual reminder of good memories. Not only can it be used for the person with dementia, but it can also be a great tool in so many ways for caregivers and friends. During visits, they can use it to spark conversation and increase feelings of happiness between the person being cared for and the caregiver or friend. It

Cynthia Guzman Cynthia’s main purpose in life is to make the journey easier for people with dementia and their caregivers, and to

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can be a visual reminder of important people in the person’s life. It can also be used for caregivers – family or facility – struggling to take care of the person’s daily needs, such as showering and dressing, as it visually provides good feelings and can make the job at hand easier to perform. I hope that you will consider making your very own “Happy Book.” Don’t make it too big or it becomes too diﬃcult to hold. I have found that one that is 5 x 7 or 6 x 8 is the perfect size. Be sure to put photos in plastic, as this will allow them to be looked at over and over. Again, I recommend putting only your favorite photos in your book. For caregivers, you might consider adding favorite scents such as citrus or lavender to the book so that not only will there be visual memories, but those of smell also. This should be a very personal book, focusing on what makes you happy. I hope that your book will have as positive an impact on your life as it has on mine. Enjoy!!!

Program- A Course for Memory Enhancement. These resources are used by programs working with people with early memory loss, as well as by individuals themselves. Her and Sellick’s newest resource, Brain Flexers, is designed to exercise many areas of thinking such as memory, attention, focus, visual-spatial processing, and sequencing. Einberger states that Brain Flexers is divided into eight sections as follows:

Helpful Resources

A common complaint among older adults is the “tip of the tongue” phenomenon. This section has a variety of language activities designed to use memory strategies to help combat this and other losses incurred due to aging and memory loss.

Warm-Ups Designed with success in mind, this is a way to help get a person comfortable with and excited about doing the remainder of the activities. Sharpening Your Senses These activities are aimed at stimulating all ﬁve senses through discussion, experiential activities, and reminiscence. Language

Over ﬁfteen years ago, Kristin Einberger began working with people with early-stage Alzheimer’s and related disorders. Many wanted to ﬁnd meaningful activity and ways to stimulate their thinking abilities. In 2007, she and a colleague, Janelle Sellick, published Strengthen Your Mind (Volumes 1 and 2), and years later created Sharpen Your Senses activity cards, as well as Strengthen Your Mind

Geography This section spurs recall of travel experiences from long-term memory.

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The activities that involve navigating maps and determining distance or area exercise parts of the brain involved in visual-spatial reasoning.

All activities in Brain Flexers are meant to be fun and interesting, but also to provide a challenge. For questions or more information on how to order any of the above resources, contact Kristin Einberger at: keinberger81@gmail.com.

Creativity This section oﬀers a variety of creative exercises that are new and unique and that use creativity to prompt our brains to think “outside the box.”

Research Updates: Highlights from the Alzheimer’s Association International Conference (AAIC) in London

History and Culture

The Value of PET Imaging

This section draws on participants’ long-term memories and promotes discussion and socialization.

Interim results were presented from the ongoing Imaging Dementia–Evidence for Amyloid Scanning Study (IDEAS), which is evaluating the use of brain amyloid PET imaging in the diagnosis and treatment of dementia. Amyloid is a protein found in the brain plaques associated with Alzheimer’s disease. Researchers reported results assessing changes in patient management and care in nearly 4,000 IDEAS study participants with mild cognitive impairment (MCI) or atypical dementia where there were challenges making an accurate diagnosis. After receiving the PET scan results, changes in medical management were seen in 67.8% of MCI patients, and 65.9% of people with dementia. This suggests that amyloid PET imaging may play a very important role in diagnosis and management of MCI, Alzheimer’s, and related disorders.

Logic and Sequence Problem solving is an important dimension of thinking. Activities in this section help to ﬂex the brain by providing opportunities to ﬁgure out the who, what, when, where, why, and how of a variety of scenarios. Music Research has suggested the value of music in helping individuals to recall details of events that were previously forgotten. Music is a universal language and these activities provide opportunities to discuss and listen to music, to share memories, and to take part in activities which stimulate long-term memory and promote socialization and camaraderie.

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In related findings, a new study by the Karolinska Institute in Sweden found that in 135 people who were evaluated for memory problems, 68% had a change in diagnosis following a PET scan. PET scans are still rarely covered by medical insurance, but these new findings may provide scientific support for their importance in obtaining an accurate diagnosis.

of this study will take this therapy into health care settings so that more people can have access to the intervention. Prevention It is not uncommon for people with Alzheimer’s or a related disorder to be concerned about increased risks for offspring. Although genetics may play a role in some cases of dementia, there are many ways to offset other risk factors. Dementia prevention is a focus of much research and intervention. Findings were presented on a report published in the prestigious journal, Lancet, that identified nine modifiable risk factors that account for up to one third of the cases of dementia. The nine risk factors include: less early-life education; mid-life uncorrected hearing loss; obesity; hypertension; later-life smoking; depression; physical inactivity; social isolation; and diabetes. Addressing these risk factors may lower one’s risk for developing Alzheimer’s disease.

Beneﬁts of Goal Oriented Therapy The GREAT Trial run by Linda Clare, PhD and researchers at University of Exeter is based on goal-oriented cognitive (thinking) rehabilitation, a program that helps people with early-stage dementia to function and maintain independence in daily activities. The study enrolled 475 participants from eight sites across England and Wales. Participants were randomized into a treatment group of working with an Occupational Therapist for ten sessions to achieve personally meaningful goals or into a control group who did not receive this intervention. Goals of those in the treatment group fell into categories including learning new memory strategies; improving attention and concentration; increasing activity; and reducing anxiety and stress. At the end of the study, researchers found that people who had received the therapy showed signiﬁ- cant improvement in their goals when compared to those who did not get the therapy. A second phase

Learning To Be “Good Enough” MemoryWorks® at CaringKind By Maria Mursch, LMSW (Manager of the Early Stage Center) and Geri Taylor, RN, MPH (Early-Stage Center Participant) The Harry and Jeanette Weinberg Early Stage Center at CaringKind in New York City was designed to meet the needs of people who have been diagnosed with Mild Cognitive

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Impairment, early Alzheimer’s disease, or a related dementia. The Early Stage Center serves people who are interested in meeting others who have similar experiences, and those who are learning to adjust to their diagnosis and changes over time. Geri Taylor has been a participant at the Early Stage Center since early 2014, and she was featured in the New York Times article “Fraying at the Edges” in spring 2016. She is a passionate advocate for people with early stage Alzheimer’s, and has chosen this forum to share her experience with CaringKind’s MemoryWorks® program.

what she has learned from the group, in her own words: Geri Taylor After attending the MemoryWorks® sessions for 3-4 years as my Alzheimer’s gets a stronger hold on my word-ﬁnding abilities, I have gained personal compensatory strategies to aid my conversational participation. Most importantly, the MemoryWorks® exercises give me greater conﬁdence in conversation and independence.

MemoryWorks® is one of several core programs at the Early Stage Center. The primary goal of this weekly, professionally facilitated group is for participants to socialize and learn from others who have similar cognitive impairments, while working together on stimulating brain exercises including word puzzles, spelling games, and a variety of trivia questions. MemoryWorks® supports participants in feeling stimulated and successful, and provides a sense of camaraderie and cohesiveness. Participants report feeling a sense of relatedness to the others in the room who are sharing similar challenges. Many participants also report feeling better about themselves when their experiences are normalized and shared with one another. Here is Geri’s account of

I have increased emotional strength and acceptance of deﬁcits, and I have embraced a new conversation style. For example: simpler sentences; fewer descriptive words (adjectives); fewer

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explanations of my thinking background. In essence, the MemoryWorks® activities reinforce the use of habitual word and expression choices. Its best outcome, as I see it, is pulling to the foreground alternate word choices frequently passed over. Hence, my appreciation for the “good enough” word choice as it maintains the fluidity of the conversation. And that fluidity allows the conversation to continue and I remain a participant. Alzheimer’s and my word finding symptoms do not become the topics or a distraction.

In addition to learning this from interacting with family and friends, I feel this adaptation has been accelerated and enhanced by sitting with my Alzheimer’s peers. Together, we have gained confidence by seeing our peers’ intelligence and wonderful intention, and we gain confidence to weather our mistakes, word choices, stuttering, “ummmm”, and even the dreaded “blank.” The “dreaded blank” occurs when we so fixate on getting a particular word that the whole point we want to express is lost. “BLANK!” Recovery is often a laugh. This usually inspires someone to jump in. Let them or take it back graciously. However, we do not withdraw, but rather we “stay in the game.” More importantly, we take this with us into our daily lives.

What I have learned: 1) Being in communication/ conversation with others is most important, not that the thought is most properly expressed. 2) “Good enough” is good enough. The perfect word is not as important as the intention to communicate feelings or thoughts.

Maria Mursch It has been my pleasure to lead Geri’s MemoryWorks® group and to support all of our early stage clients. As Geri so eloquently puts it, many of our participants learn how to accept what is “good enough” in order to participate actively in their lives while living with a cognitive impairment. For more information about the Early Stage Center, please visit www.caringkindnyc.org/earlystagecent er

3) Presence, body language and facial expressions are extremely important. 4) Faltering language is not the end of the conversation. Talking around and non-verbal expression is often just as eﬀective as an exquisite sentence. 5) You and your intelligence are not exclusively packaged in your spoken communication.

Letter to the Editor Hi Lisa,

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We love your newsletter and use it in our Early Stage groups. I am interested to see that you are using the term “care partners”instead of caregivers. We have been slowly moving that way as well. I am interested in what made you decide on this move and how it is being received.

If you are an early-stage support group facilitator, please ask your support group participants the same question and write down each person’s response.

Thanks and keep up the excellent work.

If you are a professional, what term(s) do you use with the families you serve?

If you are a loved one assisting a person with dementia, what language do you prefer. Why?

Sincerely, Arlene Huhn Manager, Client Services & Programs Alzheimer Society of Alberta and Northwest Territories

Volume 22, Number 3: Fall, 2017 Three Things I Learned About Me and My Lewy Body Dementia While on Vacation

Hi Arlene, How nice to hear from you. You raise a very important question. Language is always evolving and the terms “caregiver”, “carer”, and “care partner” are important examples of terms that may seem interchangeable but, in fact, have real and signiﬁcant diﬀerences. In response to your question, I would like to devote an article in the next issue of Perspectives to this topic, but invite essential participation from our readers:

By Mike Oliver

My recent “bucket list” trip to Europe, planned by my three daughters after my diagnosis late last year of Lewy Body dementia, brought with it three revelations about me and my disease: 1. Human relationships, especially with family, are the most precious thing in this world.

If you are a person with MCI, Alzheimer’s, or a related disorder, do you prefer the word “caregiver”, “carer”, “care partner”, or another term to describe the person or persons who may be helping you, as needed? Why do you prefer that term?

2. Getting away to unfamiliar and stunning locations, whether it’s a nearby park or a European vacation, is a sure-ﬁre way to let go of personal worries, at least for a while.

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3. I feel in awe and somewhat guilty, but I’ll get to that later. First I want to tell you a little about myself and then give you a short brieﬁng on the trip. I am 57 years old and have been a journalist for more than 30 years, working in Florida, California, and now in Alabama at AL.com. I was diagnosed with Parkinson’s last August, but other symptoms including REM behavior sleep disorder (which causes people to physically act out their dreams with hitting, kicking, or talking during sleep), hallucinations (though mild), and noticeable forgetfulness started pointing toward Lewy Body dementia (LBD). A battery of memory and neuropsychological tests has persuaded my doctors– a neurologist and a neuropsychologist– to believe it is LBD. The disease is like Parkinson’s. In both cases, alpha-synuclein proteins kill neurons (brain cells). It’s just that with LBD, the proteins are killing neurons over a wider swath of the brain. Both diseases are marked by tremors, stiﬀness of joints, muscle spasms, and other movement disorders. Some people with Parkinson’s will develop dementia, but with LBD, the dementia comes early, sometimes before any movement disorders are noticed.

From left to right: David Oliver, my brother; Jo Ellen Oliver, my mother; Mike Oliver; and Julie Vissers, my sister, at the Lewy Body Dementia Association basketball fundraiser I’m also in danger of losing what they call my “executive function” capabilities. For example: I’m getting ready for work, looking for my two cell phones. I walk into the kitchen as part of my search, see an apple and think I would like to bring that to work so I start looking for a little grocery bag to put that and other snacks in. My dog barks from outside, so I let him in and then go upstairs to brush my teeth. My wife asks if I have found my phones. “Oh shoot,” I say. A few minutes later, I go to work leaving the apple in the grocery bag on the counter. I call this forgetting what I remembered I forgot. I’m still working, playing pick-up basketball, and am relatively high functioning. However, I crashed my car a month or so ago and have elected to stop driving. Now I hold out hope my diagnosis is wrong, or I will somehow

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beat this. But as a lifelong journalist, I am also realistic and know in my heart that misdiagnosis is unlikely.

my wife Catherine, was wonderful. We are also planning a trip with Emily who because of work, did not get to come. Our daughters live far from my Alabama home– Hannah in South Korea, Emily in Boulder, Colorado, and Claire in Malaga. Just hearing their laughter was at the same time joyous and sad. And sad is OK. Sometimes the tears are renewing.

Upon hearing of this diagnosis, my daughters Hannah, 30, Emily, 27, and Claire, 24, planned a “bucket list” European trip for my wife, Catherine, and me. We started in the beautiful city of Malaga, on the southern coast of Spain, where Claire is currently living and teaching English to school children. We then flew with Claire to Glasgow, Scotland. The Kelvingrove Art Gallery and Museum there was truly one of the best museums I’ve been to, and it was free! From Glasgow, we took a train to Edinburgh where we stayed for five days in Grassmarket, a place known for its old pubs and restaurants and its presence under the iconic Edinburgh Castle. From Scotland, we flew to Dublin, Ireland, meeting our other daughter, Hannah. Among other things, we took a bus ride to see Glendalough, a valley with two beautiful lakes out in the country and the Irish Rock ‘N’ Roll Museum. We then did a short stint in London before heading back to Spain, where we capped it off with a trip to Ronda, a whimsical mountaintop town with stunning views.

Leaving it Behind I lost my cellphone and didn’t bring a laptop so was forced to live unplugged. As days went by, I quit thinking about work and my disease. I found myself living in the moment. It meant being more present in my time and place, getting into the history of places I’ve never been. I could let it soak in without answering an email or shooting off a Tweet. I Feel Awe But Also a Tinge of Guilt This is perhaps the most difficult to explain sensibly. But on this trip, I realized I feel guilty. I feel guilty and in awe. I have all these people, friends, colleagues past and present, total strangers offering me support and kindness after learning of my disease. I feel guilty because most people have to wait until their demise before receiving such an outpouring of kindness. I’m truly blessed with great friends.

Now for my three takeaways: Relationships Being on vacation with two of my three daughters, Hannah and Claire, and

Colleagues and friends at the Orlando Sentinel (where I worked

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from 1987 to 2000) started a Go-Fund-Me account to help pay for my European vacation. They raised more than double the $2,000 goal. My colleagues at AL.com organized a charity fundraising basketball game to raise money for Lewy Body Dementia Association (LBDA). Survivor guilt? Or is it the opposite? I don’t know what to call it. But I’m in awe, and so grateful it hurts.

this prevention trial including participant criteria, see the detailed and informative study website at: https://www.earlytrial.com/ Alzheimer’s Disease Neuroimaging Initiative 3 The Alzheimer’s Disease Neuroimaging Initiative (ADNI) is a study of brain aging that aims to increase the pace of discovery for ways to prevent and treat Alzheimer’s disease. For more than a decade, ADNI researchers have been working to better understand the disease. Now, in this next step, ADNI3 is studying how quickly brain cognition (thinking) and function changes. ADNI3 is deﬁning how best to measure these changes and sharing this information with researchers around the world to help lay a path towards greater advancements in prevention and treatment of Alzheimer’s. The study is enrolling participants across the United States and Canada who are 55 to 90 years old, have little or no memory concerns or have a diagnosis of early-stage Alzheimer’s disease or Mild Cognitive Impairment (MCI). For more information, see the study website at: http://www.adni3.org

Research Updates Alzheimer’s Prevention Trial The EARLY Trial is an international clinical trial recruiting participants from across the USA, Europe, and Australia. The trial is researching the risk associated with the buildup of amyloid plaques in the brain and aims to evaluate the safety and eﬃcacy of an investigational medication in people at risk of developing Alzheimer’s disease. Stopping or slowing down amyloid plaque formation in the brain may delay memory loss associated with Alzheimer’s. It may also help control other changes in the cells of the brain that contribute to the disease. If you take part in the EARLY Trial, your clinical trial doctor will tell you whether you have a buildup of amyloid plaques in your brain. A buildup of amyloid plaques is linked with a greater risk of developing Alzheimer’s disease. If you do not want to know your amyloid status, you will not be able to take part in the EARLY Trial. To learn more about

Nelotanserin for Potential Treatment of REM Sleep Behavior Disorder in LBD In our cover story, Mike Oliver references REM Sleep Behavior Disorder as one of the symptoms that

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contributed to his diagnosis of Lewy Body Dementia (LBD). This placebo-controlled clinical trial is testing the eﬀectiveness of a drug, Nelotanserin, in treating this disorder. The clinical trial occurs over the course of approximately 10 weeks and is at sites across the USA. To learn more about the study, visit the website at:http://studies.clin-edge.com/rbd_lb da/ or call Axovant Neurology Solutions at 833-600-0350.

the term care partner, but I have often heard from people with dementia of their need to be seen as a person, not a patient, and as someone who can still give and not just receive. Some have very strong opinions about language; other do not. So I requested feedback from readers, (people with dementia, their loved ones, and professionals) about the use of language to describe caring roles. The following are some replies! My sincere thanks to all who participated in this informal survey.

The Lewy Body Dementia Association recently published a resource “Lewy Body Dementia: The State of the Science” which aims to provide an easy-to-read overview of LBD and key major ﬁndings to date in LBD research. You can read or download the report at: https://www.lbda.org/StateoftheScienc e

Feedback from Individuals Living with Dementia Shayna Bowling and Arlene Huhn facilitate two early-stage dementia support groups in Edmonton, Alberta in Canada. Their participants discussed the different terms. At first many said they liked the term caregiver best because it was most familiar, but they didn’t have a lot of positive things to say about it. One participant stated, “It sounds like a hired person. That’s the lady who comes with the medicine.” However, the term “care partner” sounded unfamiliar and strange. After some reflection on words and their use, group members shared that the term “caregiver” is impersonal and more of a one-way street. They gave new consideration of the term care partner:

Caregiver? Care Partner? Carer? What’s in a Name? Editor’s note: In the last issue of Perspectives, I published a letter to the editor from Arlene Huhn of the Alzheimer Society of Alberta and Northwest Territories in which she expressed interest in seeing my use of the term “care partners” instead of caregivers in the newsletter. Since I started publishing Perspectives in 1995, my intent has always been to be a voice for people with dementia and to learn from them their evolving issues and concerns. I can’t recall how or when I became familiar with

“My husband is my partner. It reﬂects a more mature relationship, accepting responsibility for what they can give

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and we can give. My family, my grandchildren are also care partners.”

pack!” Some men in these groups preferred simply to use “my wife” over the words caregiver, care partner, or carer. One man stated, “My primary support is my wife and I call her my wife! If someone else is helping me though, I call them a caregiver.”

“I like it a lot compared to caregiver. We’re a team!” “I have a partner. I am not alone. I have abilities.”

Feedback From Those Caring for a “It means you’re involved.”

Loved One with Dementia

“It means empowerment.”

Jon, who is caring for his wife, echoed similar feelings of persons with dementia who prefer the terms husband or wife. He wrote, “My wife has Alzheimer's and I am the one who cares for her and tries to make sure things go right. However, the word caregiver doesn't fully express what I do. I think back to our wedding vows (50+ years) and remember the part about ‘in sickness and in health.’ With that in mind, I think the words husband and lover includes my caregiving role and that is my preferred terminology.” In a support group facilitated by Jayne Slade and Joyce Camiel at the University of California, San Diego Shiley-Marcos Alzheimer’s Disease Research Center, most participants agreed that they don't refer to themselves as the “caregiver” in front of their loved one although they think of themselves as caregivers and use that term when discussing their role with others. Although the reason for not using the term in front of loved ones was not provided, it illustrates concerns

We also heard from Judy Fillippoﬀ, Early- Stage Programs Coordinator for the Alzheimer’s Association’s Northern California and Northern Nevada Chapter who summarized comments from participants in four early-stage dementia groups. Most participants liked the term “care partner” as it seems more personal, is a good term for family relationships and makes them feel like they are more “together” in their eﬀorts. Many found the term “caregiver” to be more abstract, a feeling of “we owe you, and take care of you out of obligation, but it is a burden.” This term felt like it described an unrelated care provider who is paid to assist. One participant stated, “I would only use the term ‘caregiver’ for someone that I paid to help me.” Another participant, however, was very comfortable with the term caregiver and stated, “It’s more descriptive. Helpmate is okay also, and maybe spouse. I also like ‘the leader of our

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for the feelings that diﬀerent terms might evoke.

terms that focused on support, rather than care. Of the three terms (caregiver, care partner and carer) care partner was the one people were most comfortable with.

Some participants had different terms they identified with including “care advocate” or “care manager (since I am managing the situation).” One woman stated, “My husband refers to me as OIC (Officer in Charge)!" The term ‘care partner’ was new concept for many in the support group. Thinking about it for a while, more and more people said they liked it and might consider using it. One participant stated, " Care partner shows there is a relationship."

Wendy, a daughter from San Diego, wrote in about the need to acknowledge reciprocity in the relationship. “Intuitively the term care partner seems to give a sense of sharing and being respectful of both the person with Alzheimer’s and the partner. The term “caregiver” seems a very one-way term, not taking into account the efforts, helpfulness, and willingness of the one the care partner is working with. It must be such a fluid and dynamic relationship between two or more people. It’s important that our language reflect that.”

A husband from a support group sponsored by Alzheimer Society of Oxford in Ontario, Canada, shared similar feedback: “If you asked my wife, I don’t think she’d call me her caregiver. She might be okay with the term care partner, because it suggests we’re looking after each other.”

For many loved ones, that feeling of reciprocity can be challenged as the person with dementia advances and needs more assistance. Of the 25 attending Lorry Parker’s support group in Canyon, Texas, all but one preferred the term caregiver. These participants have loved ones at all diﬀerent stages of the disease. Comments include that the term caregiver “covers it all - that's what we do– with love.”

A wife shared a similar thought: “I think my husband would also prefer the idea of support rather than care, especially as it refers to me and what I do to lend a hand. He wants to feel autonomous and independent, and he tries very hard to not create work for me. He is also not really aware of all I do to care for him.”

Others noted that the word caregiver is “more universal and understood by others” and that “the word seems more compassionate.”

The support group facilitators, Anita Dahl and Elizabeth Barrie noted that most people were comfortable with

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For nearly all individuals who shared comments, both those with dementia and those in a support role, the term “carer” was an unfamiliar term and did not receive favorable feedback. This is likely due to the responders all being from the USA or Canada and the word “carer” is largely a widely recognized term in Great Britain. So, it is always important to be culturally aware of language use in regions across the world.

What comments do you most identify with in this article? Do you disagree with any? Do you and your loved ones agree on the language that describes your relationship? If not, how can you come to a mutual understanding of the use of caring and respectful terms?

Using Storytelling to Give Voice, Find Connections, and Change Perceptions

Two professionals who sent in comments shared this perspective. Clinical Social Worker and educator Beth Spencer, LMSW wrote, “I use both care partner and caregiver depending on the situation…Whenever possible I encourage the idea of a partnership but not everyone buys into that. And of course it changes with progression of the disease.”

By Lauren Dowden, MSW, LCSW In the early months of 2014, participants of Chicago’s Northwestern University Cognitive Neurology and Alzheimer’s Disease Center [CNADC] support groups for early-stage dementia [one for persons with a diagnosis and one for care partners] expressed several common concerns: 1) they wanted more programs that supported people with early-stage dementia, noting the stigma and isolation that often accompanies the diagnosis

Grace Raniga Martin, RN, writes, “I do my best to take my cues from the family and use the words they use or seem to prefer.” As this article reﬂects, there is no one way to approach language and perhaps this is a chance to open up discussion!

2) they observed that the early-stage experience was not well represented in the media, which predominantly focuses on later-stages

Questions to Consider How do you feel about the terms Caregiver, Care Partner, and Carer?

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The stories shared have included ones about notable firsts in their lives, such as the first time the couple took a child to college, while another pair shared the first time they had travelled to Europe together. Other stories, recall times when they first met, which included a sibling recounting the first time she saw her younger sister. The participants are encouraged to choose stories that they feel empowered to share with others, some of which are humorous and others where the couple explore a time in their lives that has challenged them and ultimately helped to strengthen their relationship. Since the pilot program, the project has enrolled more participants and has aimed to research and explore the impact of the storytelling workshop on their relationship and communication. Participants, usually 2-to-3 pairs per workshop, meet for 8 weeks for 1.5 hours. Using in-class writing, at-home assignments, and group feedback, couples create their shared story together. The stories are presented in the final session and eventually to the public, if they choose. Twenty people (10 pairs) have participated in the storytelling workshop from the Chicagoland area, Indiana, and Michigan. Couples have included spouses, siblings and parents and children ranging in age from 34 to 80. Preliminary findings on the impact of the storytelling workshop include couples noting a strengthened

Judy (center) and her daughters, Jane (left) and Rhiannon (right), shared their co-created story at the 2016 CNADC Alzheimer’s Day, an annual educational forum for scientists and the public. 3) the term “caregiver” invalidates the many dimensions of their relationship. These concerns inspired the development of the storytelling workshop, which was to create a meaningful shared activity for persons living with dementia and their partners, offering them a way to share experiences of daily living, advocate for resources, and improve understanding around early-stage dementia. The storytellers’ reflections on the writing process revealed how the process of reminiscing about the past to create their story allowed the couple to spend time together in a way that helped maintain their ‘couplehood’ as husband and wife, as opposed to being identified as caregiver and patient. One storyteller expressed, “It makes you focus on the fabric of your relationship that you never stopped to think about. It’s what really holds us together.”

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relationship as well as the pairs developing new relationships with the other participants. Also, the research reveals that the workshop invites the participants to adjust to the multiple changes and losses they are experiencing in a safe and supportive environment. One participant shared, “It gave us a chance to talk about things in a way that we maybe wouldn’t have been prompted to before.”

Feedback from audience participants reﬂects a deeper understanding of some of the experiences of a family living with Alzheimer’s or a related dementia. One student shared, “We focus so much on the clinical picture…it’s so helpful to be pulled back into the real world and hear what happens when they walk out of the doctor’s oﬃce.” The storytelling program has been featured on the TODAY show: https://goo.gl/sAjLMn and in the New York Times: https://goo.gl/GftW8e For more information about this program, please contact clinical social worker and storytelling facilitator: Lauren Dowden, MSW, LCSW at lauren.dowden1@northwestern.edu.

The storytelling families have collectively shared their stories with over 1,500 people in the Chicagoland area including medical and other healthcare professionals, students, scientists, and community members.

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