InSight 2017

Features on people and efforts that bring the knowledge we seek on Alzheimer’s disease and lifelong brain health ever closer in sight from the

P E N N

M E M O R Y

C E N T E R FALL 2017 / WINTER 2018

The Importance of Study Partners

These family members, friends are the key to discovering better treatment At Penn Memory Center, participating in research often means having a dedicated study partner Here’s Why | Page 2

PENN MEMORY CENTER PERELMAN CENTER FOR ADVANCED MEDICINE

215-662-7810

www.pennmemorycenter.org

by David Ney

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ohn Witzman is a father, a grandfather, and a bubbly museum tour guide. He loves eating out for dinner and teaching his grandson how to put on socks. But first and foremost, he has been a devoted husband for 44 years. And since his wife was diagnosed with Alzheimer’s disease, even the simplest of pleasures have changed drastically.

“I didn’t expect that I would also have to help my wife with her socks,” he said.

“Now we go out to dinner most nights of the week. Part of the reason is because it’s good to get out of the house and into a social setting, but also it’s because I don’t know how to cook much. For all of our years together, she always was the chef, but now eating at home is a bigger challenge.”

Terrence Casey / Penn Memory Center John and Jackie Witzman outside the Penn Memory Center in the Perelman Center for Advanced Medicine.

Witzman wants to do everything in his power to help her. He has learned to be more patient with her. He reminds himself that he is angry not at his wife, but at her disease. He practices focusing on the positives, accepting that failure will always be a part of changing their routines.

Hope, however, is not lost on Witzman. He and his wife are enthusiastic participants in research. For years, they have been enrolling in clinical trials. A tenacious spirit, Witzman goes to great lengths to support his wife and ease her condition.

The Need for Study Partners For studies of Alzheimer’s disease and other causes of dementia, enrolling a single patient in the study typically requires two participants: the patient and the study partner.

A study partner is an individual who lends support and logistical assistance to the patient, while also providing researchers with information about the patient.

“It’s not easy, because doctors always tell me to look out for certain benchmarks to see how she’s progressing, and sure enough they keep coming true. She’s not getting healthier,” he said.

For the friends and family of those affected, there are many reasons to get involved in Alzheimer’s disease research, both as caregivers and study partners. But for each reason for participation, there is an obstacle discouraging potential partners from enrolling in clinical research trials.

In five years or in 50 years, what my wife and I are doing will help our kids and theirs to avoid this.

The study partner’s task is substantial. In clinical research trials, study partners must provide accurate assessments of the patient’s progress, ensure the patient’s adherence to a strict medication regimen, and oversee attendance at appointments with researchers. Because the patient may be experiencing cognitive decline and memory loss, a study partner’s role as informant remains essential to the collection of useful data. As the disease progresses, the study partner takes on an increasingly integral role.

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“But I do believe that by being involved in research, we’re part of a community. I believe in the cause that in five years or in 50 years, what my wife and I are doing will help our kids and theirs to avoid this.”

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The study partner serves not only as informant, but also as logistical aid. The study partner is often involved in transportation, describing risks and benefits to the patient, and helping researchers and the patient through the process of informed consent.

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Researchers and patients alike rely on study partners to be proactive and reliable. The day-to-day work can be trying, but the long-term commitment makes clinical research on Alzheimer’s disease possible.

Studying the Study Partners The scientific community spends millions of dollars trying to understand the brains and behavior of study participants, but what do we know about their partners? Who are these people? Researchers and clinicians rely on them. Participants depend on them. So what motivates a study partner to join a research project, and how can he or she affect a study?

“The single most common reason a trial fails is because it doesn’t adequately recruit a full sample size or the right sample size,” said Joshua Grill, PhD, associate professor of psychiatry and human behavior at University of California, Irvine.

“Study partners are the key to recruitment.”

Joshua Grill

For many Americans, a study partner is a familiar face, a family member, or a close friend who may already be a primary caregiver for the participant. According to the Alzheimer’s Association, while most caregivers for people with dementia are adult children, the majority of study partners in dementia research — about 66 percent — are spouses or domestic partners of the participants. This raises an intriguing numbers problem for Grill, who studies research recruitment.

“Most Alzheimer’s patients don’t have a spouse,” he said.

“There is a real disparity, then, in terms of who has this disease and who enrolls in our trials.”

In a study led by Johns Hopkins professor Betty S. Black, PhD, 62 study participants from nine clinical trials related to aging and dementia were interviewed to better understand the effects of study partners on research. Many of these study participants were enrolled in trials at the Penn Memory Center.

“Study partners let a person with dementia or cognitive impairment participate in research,” Black said. “They become the guide for the person going through the disease progression. They become, in many ways, the hands and brain of the person participating in research.”

Without a study partner, the participant has no road map.

As memory impairment gets worse, the need for a partner only increases.

Researchers identified many reasons to engage in study trials: altruism, a desire to feel actively engaged, a search for INSIGHT

hope, and a lack of other treatment options. The most common reason for involvement, though, is that partners long for their loved ones to get better.

One spouse explained her desire to see her husband’s condition improve: “My expectation is that it would improve his memory. I don’t think there is a cure for Alzheimer’s, I really don’t, but I would love to see an improvement in some of the things that he’s exhibiting right now, memory and confusion and even his depression. If I could even just see a 50 percent, a 20 percent – I’d be thrilled with 20 percent. I’d love a 50 percent improvement, and just prolong that so that he has a better quality of life. That’s really it, just hoping for a better quality of life for him and for me.”

That closing statement was a common refrain in Black’s research; study partners are working to make their own lives easier.

Study partners frequently reported their own desire to learn about the diagnosis or assessment, to better understand the participant’s status over time, or simply to have another, more specialized set of eyes on the patient’s wellbeing.

“The positive side of being a study partner is having access to superior medical staff, research physicians and clinical trial leaders,” said Jean Atlee, a study partner to her husband in multiple clinical research trials at the Penn Memory Center since 2008. “I have always felt that we were not just a ‘number,’ but that we were a valuable part of that community to perhaps help those in the future by the results of these various trials.”

Jean Atlee

While many partners strive for a brighter future with their loved ones, altruism remains at the core of this work.

The advancement of knowledge and scientific understanding are a major impetus behind today’s Alzheimer’s research. This reality falls heavily upon participants and their partners, whose efforts are often met with negative results or inconclusive evidence. In a field with more questions than answers, frustration is common.

To combat this, researchers try to make clear the farreaching goals of a study and encourage participants to understand that their involvement will benefit future generations. Caregivers and patients are encouraged to embrace hope that their efforts might lead to healthcare breakthroughs.

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At the very least, they will have done their part to improve the lives of their own children and grandchildren.

Study participants are determined to keep trying.

“The thing is in this particular case, with this particular disease, there’s virtually very few or no alternatives,” one study participant said. “There’s no known cure. There’s nothing for Alzheimer’s. You’re gonna reach for whatever you can get.”

Her reason for participation? Hope.

Burdens for Study Partners When Black inquired as to whether her study partners were experiencing any additional challenges due to their research participation, one-third denied any change. Minor responsibilities like dealing with email and phone correspondence, scheduling appointments, and administering medication were downplayed by this group.

Those who did report burdens cited logistical inconveniences. Travel, constant appointments, meeting delays, and last-minute scheduling changes can make for a hectic schedule. Traveling long distances or repeatedly making the same trip can exasperate many partners.

This does not include the emotional toll that can come with being a study partners.

The study partner cannot be a purely unbiased or objective source. Stress will come.

For some, it dawned on them in the waiting room, faced with late-stage patients foreshadowing the decline of their loved ones. Sometimes, they were asked questions they could not answer. Or worse, they did know the answer, but saying it aloud felt like an admission of serious cognitive deterioration. And the study participants’ struggles often went hand-in-hand with those of their partners. Long waits, delays, or procedural mistakes took a toll on both the patients and the partners.

Black and her colleagues have shone a light on an undervalued, but exceedingly necessary, facet of Alzheimer’s disease and dementia research: accommodating study partners may enormously improve the efficacy of research projects. The goal is to increase participation in research and to create a more enjoyable experience for those involved. Reducing study partner burdens and reinforcing the positive reasons for research participation are two such steps toward this end.

Grill made a similar assessment. Tailoring messages about research trials to specific study partner groups, including INSIGHT

spouses and adult children, may lead to more invested and reliable partners. The ultimate result may be a more effective trial.

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The patient...should be at the center, but being right next to it takes a toll.

Improving the Lives of Study Partners “I would like to see a study where the psychology of study partners is looked at. Being a partner can be lonely and isolating,” Witzman said. “Of course the patient who has the condition should be at the center, but being right next to it takes a toll. At the end of a long day, week, or year, you can feel drained and even depressed.”

Black said she has heard testimonies from study partners like Witzman, and she agrees that further work is necessary to accommodate partners.

“These are folks who want to know what is happening,” she said. “They want to be a part of the process. They deserve to be told by the researchers that they are important.”

For other researchers in this field, Black has a few recommended methods for improving the study partner experience.

First, consult past study partners in an official capacity to learn about their experience.

Second, incorporate feedback into the protocol of a trial. If partners say that they want to be more involved, then they should have a scheduled meeting with the Principal Investigator.

Participants also asked that researchers keep in touch about study results and new developments in the field.

According to Black, however, the most urgent area for change is in keeping hope alive.

“Make sure they have hope. Hope plays a big role in why people get involved, and even if the results aren’t as positive as we all want, in every research study we are learning.” _________________________________________________ David Ney was a Penn Memory Center communications intern from 2016 to 2017. He graduated from the University of Pennsylvania in 2017 with a degree in biological basis of behavior. He plans to attend medical school next year.

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CHOP intergenerational program offers ‘meaningful engagement’

by Chloe Elmer

new partnership between the Penn Memory Center (PMC) and Children’s Hospital of Philadelphia (CHOP) is bridging the the gap between the city’s older adults and young children. It’s a collaboration that organizers believe can benefit both parties.

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“When older adults retire, there’s an increase in isolation and also a lack of sense of purpose,” said Megan Fucci, PMC social worker and the program’s coordinator. “This program was designed to give opportunities to older adults.”

Meanwhile, spending time in the waiting room of a doctor’s office can be a daunting task for a small child. That is, unless they have an enjoyable distraction.

Volunteers in the new Building Bridges Intergenerational Program read to children in the waiting room of CHOP Primary Care in South Philadelphia. Other volunteers promote literacy elsewhere in the building, at the Philadelphia Free Library and the DiSilvestro Recreation Center.

Chloe Elmer / Penn Memory Center Above: Volunteer Leslie Wolff entertains a Children’s Hospital patient with the help of puppets Bluey and Rufus. Below: Volunteer Eleanor Lundy-Wade reads at Children’s Hospital.

“I can’t imagine a child not reading,” said PMC volunteer Eleanor Lundy-Wade, an avid reader who recalls spending summers as a child getting lost in stories picked up from the local bookmobile.

Lundy-Wade reads and colors with children while they wait to see their CHOP doctors. She wants to get kids excited about reading because, she said, it’s a powerful way to open doors and learn about the world.

“Games are fun,” said Lundy-Wade, “but a book is so much more powerful.”

For Leslie R. Wolff, volunteering for CHOP is payback. As a child, he fell into a coma after being hit by a car, but he went on to make a full recovery at CHOP. Wolff sees Building Bridges as

“an opportunity to pay back the people who saved my life.”

Wolff connects with children in the waiting room using his colorful “puppet buddies,” Bluey and Rufus, whose personalities are as unique as their appearances.

“The goal of the program is to provide meaningful experiences to bridge the gap between the generations,” said Maureen McTamney, volunteer services technology analyst for CHOP. “Having them able to come together in a way that can benefit both…I think it can really benefit CHOP but then also society.” ________________________________ Chloe Elmer was a Penn Memory Center communications intern in 2017. She is now a freelance photographer. Her work can be found at www.chloeelmer.com.

Interested in learning more about this volunteer opportunity?

Contact Alison Lynn, LSW, assistant director of care programs at 215-360-0257 or alison.lynn@uphs.upenn.edu.

INSIGHT

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Finding Beauty In What Remains

by Chloe Elmer

n a rainy Tuesday, Carl Duzen pulls open the garage door to his Havertown home as his wife, Susan Jewett, watches from the dry kitchen.

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He goes inside, dives into his toolbox — “he loves his tools,” Jewett says — and finds a screwdriver. An old clunker of a television is positioned under the garage’s main light, and Duzen starts unscrewing, pulling off the back and exposing the ‘tube.’

The TV, one of those old cathode ray tube sets, was long ago considered obsolete by a neighbor, but Duzen sees something valuable, beautiful even, in the discarded piece of old technology.

A scientist by training, Duzen has taken to alchemy in the last two years, turning what others call junk into works of art.

Chloe Elmer / Penn Memory Center Above: Carl Duzen dismantles an old television in search of the copper inside while Susan Jewett observes. Below: The copper is on display in Duzen and Jewett’s home.

‘Not ashamed’

Watch as Carl Duzen’s hobby becomes an art exhibition.

Visit www.pennmemorycenter.org/copper

Duzen, 81, was diagnosed with Alzheimer’s disease during a 2014 visit with PMC Co-Director David Wolk.

“I didn’t know what to do,” Duzen said.

“I was kind of glum.” He searched for a coping mechanism and found one in the basement workshop.

Jewett, 70, an artist and former art educator, was impressed by how her husband dealt with the diagnosis right away, saying that he continues to challenge his mind in enjoyable ways.

“Carl said very clearly to me after that diagnosis, ‘I just want to put one foot in front of the other,’ ” Jewett said. She was surprised when she heard Duzen telling neighbors about his diagnosis.

“So this is the path he was on, and clearly he was not ashamed of it,” she said.

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Designating Art Once Duzen developed a routine taking apart TVs, Susan began recruiting friends and neighbors to search garages and basements for old electronics. They began piling up, as did supplies.

Wandering through Duzen’s basement workshop one day, Jewett noticed six bundles of cut copper wire arranged neatly in a row, Duzen’s organization strategy.

“It just struck me how really beautiful it was,” says Jewett, “and [I] decided that people would see it as beautiful if you put a frame around it, because that’s how we designate art.”

Those first few bundles are proudly on display in their home, along with much of Jewett’s art created over the years. As individual works, they would have made for a conversation starter for guests. But Duzen, quickly understanding his wife’s vision, continued to bring in various forms of copper up from the basement or in from the garage.

The two found the introspection of the art unique and inspiring, and so they began making plans to share it with the public.

A gallery exhibition entitled, “Carl Duzen: Copper // Denying Dementia Its Due,” was held at the Main Line Art Center in Haverford. Duzen and Jewett are also the subjects of an upcoming documentary by independent filmmaker Mike Attie in partnership with Teya Sepinuck, founder and artistic director of Theater of Witness.

The gallery is a showcase of a work in progress.

Duzen plans to continue with the work “as long as I can get people to give me TVs and other things.”

“Anything that has useful material in it, I want it.” Duzen said. ________________________________ Chloe Elmer was a Penn Memory Center communications intern in 2017. She is now a freelance photographer. Her work can be found at www.chloeelmer.com.

INSIGHT

Chloe Elmer / Penn Memory Center Top: A visitor looks over the exhibition “Carl Duzen: Copper // Denying Dementia Its Due” at the Main Line Art Center in Haverford. Middle: Carl Duzen explains his process to a guest.

Bottom: Carl Duzen and Susan Jewett pose for photos at the exhibition.

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Penn Memory Center Staff News

PMC scholars’ grants ‘will advance field of Alzheimer’s research’

cognition and neural stimulation, and Dawn Mechanic-Hamilton, Ph.D, assistant professor of neurology and PMC director of cognitive fitness programs and neuropsychological services.

Two Penn Memory Center scholars — Shana Stites, PsyD, and Karolina Lempert, PhD — were recently awarded grants that will advance “not only their careers but as well the field of Alzheimer’s disease research,” PMC leadership said.

Norise, from the Perelman School of Medicine, worked with Dr. Hamilton on a project that examined the use of biomarkers in distinguishing primary progressive aphasias (PPAs). PPAs are characterized by slow, progressive impairment of language capabilities, often associated with Alzheimer’s disease and other neurodegenerative diseases.

Dr. Stites was awarded an Alzheimer’s Association Research Fellowship program grant. This grant supports “exceptional researchers” early in their careers “with the goal of bridging the fellow to faculty positions of researchers,” according to the Alzheimer’s Association. The two-and-a-half-year grant will support Dr. Stites’ work as senior research investigator for the Penn Project on Precision Medicine for the Brain Shana (P3MB), led by Jason Karlawish, co-director of the Stites Penn Memory Center.

The goal of her project, The Study of the Psychosocial Effects of Preclinical Alzheimer’s Disease, is to understand how diagnosing clinically normal persons with Alzheimer’s disease by using genes and biomarkers will affect the public’s views toward persons with the disease and the patient’s experience. The results will help reduce stigma of Alzheimer’s disease. Her goal is to safely move advances in diagnostics and treatment from research into routine clinical practice.

Catherine Norise

Nabong, from the Lewis Katz School of Medicine at Temple University, worked with Dr. MechanicHamilton on a project that examined the use of transcranial direct current stimulation (tDCS) in cognitive training in healthy older adults. tDCS is a non-invasive method of neural stimulation that is delivered via electrodes to the scalp, and has been a Maria Florence focus of research for its potential in improving cogniAquino Nabong tive performance.

Dr. Lempert, a Penn Memory Center postdoctoral scholar, was recently awarded the Ruth L. Kirschstein Postdoctoral Individual National Research Service Award by the National Institute on Aging. This fellowship will allow her to gain expertise in the neuroscience of aging and Alzheimer’s disease to increase the clinical relevance of her research.

Karolina Lempert

Dr. Lempert has been working on studies looking at how changes in episodic memory with aging might lead to changes in economic decision-making. In her doctoral work, she studied the role of emotion and episodic memory in economic decisions in young adults. At the Penn Memory Center, she is extending her cognitive neuroscience research on decision-making to an older adult population.

PMC Minority Research Scholars complete inaugural program This summer, medical students Catherine Norise and Maria Florence Aquino Nabong completed the inaugural cohort of the Penn Minority Scholars in Aging Research program.

The two contributed to research on neurodegenerative diseases under the guidance of faculty mentors Roy Hamilton, MD, associate professor of neurology and co-director of the laboratory for

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Patira joins PMC as clinical fellow Riddhi Patira, MD, joined the Penn Memory Center in 2017 as a clinical fellow after completing an internship and her neurology residency at Temple University Hospital from 2013-2017.

Riddhi Patira

Dr. Patira has research interests in mapping the underlying networks of various cognitive function. She hopes to develop skills to become a well-rounded cognitive neurologist trained in all aspects of neurodegenerative disorders and an independent researcher.

Social workers complete internship, Penn’s MSW degree program

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Kelsey Fleming

Megan Fucci

Deirdre MacFarlane

Lauren Tempesta

Kelsey Fleming, Megan Fucci, Deirdre MacFarlane, and Lauren Tempesta successfully completed their internships in clinical social work at PMC, a final step in earning a Master in Social Work degree from the University of Pennsylvania’s School of Social Policy and Practice. The students trained under Felicia Greenfield, PMC director of clinical research operations and care programs.

New faces at Penn Memory Center Benjamin Bear joined PMC as a research coordinator in 2017.

He is doing qualitative data collection and analysis for the SOKRATES II study, working with Kristin Harkins, MPH, to understand why individuals decide to share or not to share their APOE genotype, a gene used to predicted risk of developing Alzheimer’s disease. He also manages the PMC Brain Health Research Registry and coordinates the Typical Day photo elicitation project. Bear earned his bachelor’s in anthropology from St. Mary’s College of Benjamin Maryland in 2014 and his master of social work degree Bear from the University of Maryland in 2017.

Cynthia Clyburn is a social work intern for Penn Cognitive Neurology and is training under Felicia Greenfield, PMC director of clinical research operations and care programs. She graduated from the College of Charleston in 2014 with a bachelor’s degree in sociology and a concentration in gerontology. She is pursuing a master of social work degree and the Penn Aging Certificate at the University of Pennsylvania’s School of Social Policy Cynthia and Practice.

Clyburn Shauniqua Key is a social work intern at RalstonPenn Geriatric Clinical Practice. Key graduated from Howard University in 2016 with a bachelor’s degree in healthcare management. She is currently working towards receiving her master of social work degree with a specialization in healthcare at the University of Pennsylvania.

Shauniqua Key

Hyun “Monica” Kim joined PMC in 2017 as a neuropsychology practicum student. In this role, she will administer neuropsychological assessments to patients and research participants and will assist Dr. Dawn MechanicHamilton with the Cognitive Fitness Program. A doctoral student in clinical psychology at Boston University, Kim earned her master of science from Korea UniversiHyun “Monica” ty in neurobiology and her bachelor’s degree in psycholKim ogy from University of California, San Diego.

Jackie Lane

Jackie Lane joined PMC in 2017 as a research specialist.

Lane is a research coordinator for the NACC (National Alzheimer’s Coordinating Center)-TPI and NACC-API studies, which are comprehensive research efforts collecting ongoing individual data from participants in order to research Alzheimer’s disease, mild cognitive impairment, and life-long brain health. Lane attended Swarthmore College for her undergraduate studies, receiving dual degrees in biology and cognitive science.

Joyce Lee is an editorial assistant working with Communications Coordinator Terrence Casey, creating content for the Penn Memory Center and the NIA-funded Alzheimer’s Disease Center’s Outreach and Recruitment Core; the CDC-funded Healthy Brain Research Network Center; and the Neurodegenerative Disease Ethics and Policy Program. Joyce will also contribute to www.makingsenseofalJoyce zheimers.org, www.mytypicalday.org, and www.whealthLee care.org. She graduated from Princeton University with a bachelor’s degree in neuroscience and is currently on a gap year exploring her interests in journalism and medicine. She hopes to pursue a career as a physician and a writer.

Christine Pappas

Christine Pappas is a social work intern at RalstonPenn Geriatric Clinical Practice. She is currently pursuing both a master of social work degree and an MS in social policy at the University of Pennsylvania.

Christine received her bachelor’s degree in narrative studies from Brown University in 2014.

Arielle Schreier is a social work intern at the Penn Memory Center. She is pursuing a master of social work degree, with a concentration in aging, at the University of Pennsylvania’s School of Social Policy and Practice.

She received a bachelor’s degree in Sociology from the University of Florida in 2015.

Allison Weiss joined the PMC in 2017 as a clinical research coordinator for the Biogen study. She also performs cognitive assessments for the NACC study. Weiss comes to PMC after earning her bachelor’s degree in brain and cognitive sciences from the University of Rochester, where she worked in an Alzheimer’s disease lab at the Rochester School of Nursing.

Arielle Schreier

Catherine Wilsnack is a social work intern for Penn Cognitive Neurology and is training Allison under Felicia Greenfield and is pursuing Weiss her master of social work degree from the University of Pennsylvania. She received her bachelor’s degree in psychology and minors in Hispanic studies and sociology at University of North Carolina at Chapel Hill.

Catherine Wilsnack

Lauren Zelouf is a social work intern at the Penn Memory Center. Lauren is currently pursuing her master of social work degree and the Penn Aging Certificate at the University of Pennsylvania. She received her bachelor’s in human development and family studies and minors in Spanish and anthropology at the University of Vermont in 2015.

Meet the rest of the faculty and staff who make up the Penn Memory Center: www.pennmemorycenter.org/who-we-are

Lauren Zelouf

Philip Marshall, Preserving a Legacy Editor’s Note: This article was originally published at www.makingsenseofalzheimers.org and has been edited for print. The complete version, along with a video interview between Philip Marshall and PMC Co-Director Jason Karlawish, can be found online. Making Sense of Alzheimer’s is a creative space for understanding the past, present, and future of Alzheimer’s disease. It is an evolving forum for conversation about the disease.

by David Ney

n her signature white gloves and elegant hat, Brooke Astor was known throughout the 20th century for her kindness and extravagant generosity. When she passed away in 2007 at the age of 105, the New York Times called her the “The First Lady of Philanthropy” for the millions of dollars she invested in New York museums, libraries, shelters, and community programs via the Vincent Astor Foundation.

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With generous acts and a contagious energy, she devoted herself to the preservation of cultural centers including the Metropolitan Museum of Art and the New York Public Library.

Astor had a sparkling group of friends that included former First Ladies Nancy Reagan, Jackie O, and Lady Bird Johnson; as well as prominent leaders of government, media and finance, like Henry Kissinger, Barbara Walters, David Rockefeller, and many more.

Her favorite designer, Oscar de la Renta, was married to Annette de la Renta, one of Astor’s closest friends.

A proud centenarian, Astor maintained her own dignity with beloved INSIGHT

dresses, art, and distinguished company. But as she accumulated birthday celebrations, it became apparent to those around her that her health was rapidly deteriorating.

Philip Marshall, Astor’s grandson, took notice of his father’s harsh attitude towards his grandmother, ultimately discovering a pattern of neglect and financial abuse.

Her son, Anthony Marshall, was guarding a secret. Throughout her 90s Astor’s behavior grew erratic and irregular: she would get lost on her own properties, she lashed out at longtime assistants. Friends who visited her said that she would repeat herself and would get confused often.

He became the central figure in protecting and preserving Astor’s dignity at the end of her life. His painful experience would transform him into a passionate advocate for elder justice.

Her staff was worried about her. In the year 2000, just months before her 100th birthday, she reluctantly agreed to see a neurologist with her son when she received her painful diagnosis: Alzheimer’s disease.

As her disease progressed, her relationships suffered. She tried to maintain her social life but had nurses accompany her on all outings. Over a four-year period, nurses filled up 30 notebooks that portrayed Astor as a woman in despair. Her son’s presence in her life was constant, and Astor’s staff said that he often made her unhappy.

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Historic Preservationist Since 1990, Marshall has been a tenured professor at Roger Williams University. The combination of his undergraduate degrees in geology and studio art, a master’s degree in historical preservation, and experiences in construction and preservation made him uniquely qualified for work in the field of historical preservation.

Meanwhile, his grandmother’s philanthropy work also had become engaged with community preservation. Each charting their own course, grandson and grandmother found themselves on similar paths to protect and defend beauty wherever it was.

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Philanthropy is the priceless meaning of humanity. And through that lens...we can break though ageism by example. Seniors are not ‘the problem,’ they are part of the solution.

What combines the two passions, historical conservation and elder justice, that have defined Marshall’s career?

“Both deal with the ageless value of that which is old, but which may be discounted,” Marshall said, “sometimes until it is too late.”

His unique educational track suited him nicely for work in historical preservation. That experience of dealing with delicate, aging beauty situated Marshall to save his grandmother from further abuse.

A signal moment for Marshall came in January of 2006, when he went to visit his grandmother.

Defying his father’s previous request to be present during visits, “I snuck in with the help of my grandmother’s staff and caregivers, sat down with two nurses, and they just explained how wrong things were. I didn’t need to look far,” he said.

“The place was cold, the parquet floor on the dining room was the litter box for the dogs, and there was what I’ll now call medicinal deprivation. Nurses were taking money out of their pockets to buy things for her.”

Marshall saw deterioration, and he saw abuse. He looked to his grandmother for inspiration. He searched his own mind and background and knew that he had to act. He and his grandmother had a shared passion for preservation, and those instincts, from years of schooling, kicked in.

INSIGHT

Visit .org

Marshall began reaching out to his grandmother’s inner circle. He sought guidance from David Rockefeller and Annette de la Renta who both graciously took to Astor’s defense and offered legal counsel and emotional support. Together they provided affidavits and helped Marshall prepare a petition for guardianship. Both de la Renta and J. P. Morgan Chase would be appointed guardians.

Advocate for elder justice

In a high-profile criminal case that persisted for years, Marshall accused his father of stripping Astor of her dignity for his own self-enrichment by siphoning money from income from her estate and by selling her artwork, notably her favorite painting by Childe Hassam.

“For about four decades she practiced philanthropy as an elder and recognized that philanthropy is the priceless meaning of humanity. And through that lens of humanity I think we can break through ageism by example. Seniors are not the ‘problem,’ ” Marshall said. “They are part of the solution.”

Her son, claiming they needed more money despite Astor’s annual income of $5 to $6 million, sold the painting for $10 million and took $2 million in commission. Afterwards, Astor asked her son, “Now can I buy dresses?”

Astor died in 2007 at the age of 105.

Two years later, along with 70 other witnesses, Marshall testified against his father in criminal court.

The charges included grand larceny, criminal possession of stolen property, forgery, scheming to defraud, falsifying business records, offering a false instrument for filing, and conspiracy.

Ultimately, the jury convicted Anthony Marshall of grand larceny and up to three years in prison. He served three months before being released for medical reasons. Anthony Marshall died in 2014.

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It is evident from the guardianship filed for his grandmother (and against his father) that the grandson of a wealthy New York City socialite could have benefited financially from staying silent. But that was never a consideration for a Marshall. After all, he was following the example of a national symbol for philanthropy.

Typically, the topic of elder justice arises following a case of elder abuse. But Marshall frames seniors as the solution to ageism and prefers his advocacy to focus on optimism by emphasizing elder justice over elder abuse.

When people ask him if he’s combating elder abuse? He says no, “I’m advancing elder justice.”

What exactly is elder justice? Years passed while Marshall reflected on what the term meant to him as a man who fought for justice on behalf of his grandmother.

As a leading advocate for a nationwide push to promote elder justice, Marshall has helped redefine the term.

“I was trying to create an absence of tension for my grandmother. In seeking

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guardianship I was trying to help my grandmother and help those who were helping her. It was only last year where I realized that’s only half of elder justice: we’re helping elders. That’s fine. Not only was I helping my grandmother and those who were helping her, but I was bringing my father to justice,” Marshall said.

Combatting ageism, supporting elders, and seeking justice. These are just some of the many components that he now draws upon in his evolution from a grandson focused on preserving his grandmother’s dignity to an advocate advancing a national cause.

Being complacent is as wrong as being complicit, so he does not sit idly knowing that others are suffering, he said.

Integrating wealth, health In many ways, Astor was exceptional.

However, she was also just another member of the population who are typically at risk for financial scams and exploitation: older adults.

Normal forms of aging can cause cognitive decline, but neurodegenerative diseases like Alzheimer’s can dramatically affect a person’s ability to handle their own daily life chores, including managing their finances. Early detection of changes in financial acuity can put older adults in a better position to protect their savings. Nobody wants to lose money because of an ill-advised financial decision or because they are targeted by a financial scammer.

One potential solution put forward

by Dr. Jason Karlawish, co-director of the Penn Memory Center, is to encourage the intersection of financial and healthcare institutions. Karlawish introduced the term “whealthcare” to address the inseparability of a person’s health and financial standing in today’s world. Health, wealth, society and the self all must merge seamlessly in INSIGHT

order to protect and preserve an aging population.

Marshall believes that the financial industry could have detected and quite possibly prevented his grandmother’s abuse.

Banks can detect changes in financial activity with ease. When someone leaves the country without telling their credit card company, the card gets put on hold when there’s a purchase. When someone who spends a consistent amount each month suddenly makes two massive purchases, the bank notices. These types of interventions have become standard. Further steps in this direction are key to protecting older adults.

Friends and family often perpetrate financial fraud and abuse. One way to combat this is to allow banks and designated family members to monitor accounts in a view-only mode. This puts financial professionals in the position to detect a problem and then reach out to clients if they need guidance.

Another financial intervention would include collecting names of trusted individuals that banks can contact if, for example, the account holder calls the bank multiple times throughout the day to execute the same transaction. Banks can enact policies that are in line with common sense that helps

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older adults remain financially secure.

“There are probably six forms of [elder] abuse, but the top two — based on reality — are elder financial exploitation and emotional or psychological abuse,” Marshall said. Although he was aware of the psychological abuse, financial institutions could have played a significant role in bringing attention to the financial exploitation.

No such alert system was in place for Astor, and businesses did not feel financially or ethically compelled to intervene. However, financial institutions and security agencies are changing, Marshall noted, ticking off names like FINRA, NASAA, SIFMA, and CFPB, that more players have positioned themselves to support elder justice.

The story of the last years of Astor’s life is a sad one, but her grandson’s courage has helped to forge new possibilities for the elderly. The arc of history bends towards justice and in the years since Marshall has become a public advocate for elder justice, true progress has been achieved. _______________________________ David Ney was a Penn Memory Center communications intern from 2016 to 2017. He graduated from the University of Pennsylvania in 2017 with a degree in biological basis of behavior. He plans to attend medical school next year.

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In Gardening Program With Teenagers, Seniors Plant Seeds for Healthy Aging

by Janice Bonsu

very Saturday for four months, I laced up my sneakers for a two-hour program called “Dance for Health: Active Body, Active Mind,” where older adults came together to engage in physical and intergenerational activity to promote brain health.

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Usually, these Saturdays were spent learning line dances like the Bop and Charleston — dances that, as a 23-yearold, I was learning for the first time — in an effort to increase participants’ physical activity and, therefore, help preserve cognitive health. But the surprise beneficiaries turned out to be the high school students who participated in monthly intergenerational activities.

These students showed up hoping to learn about cooking and gardening; they left with a roadmap for healthy aging.

Janice Bonsu / Penn Memory Center Above: Dance for Health participants plant vegetables outside of Ralston House in West Philadelphia. Below: Janice Bonsu waters the newly-planted vegetables.

At PMC, many research participants say their motivation is to create a world for their grandchildren in which Alzheimer’s disease is not a threat. But what if there were something those grandchildren could be doing for themselves now?

During one of Dance for Health’s intergenerational meetups, we hung up our dancing shoes to meet in the garden, where an expert taught us the benefits of growing your own vegetables and herbs.

Our teacher also stressed the importance of companion planting, or planting certain vegetables and herbs alongside each other, so that they may nourish what the other depletes, growing stronger together.

This lesson resonated with me as I saw the high school and older adult participants sharing knowledge with each other and sowing seeds of mentorship. In clinical trials, participants may not directly benefit from the studies, but in mentorship, effects can be revealed in real-time.

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Throughout the conversations, the older adults began to pass advice to the teenagers. They spoke about the importance of eating fish, vegetables, and whole grains to reduce the risk of Alzheimer’s disease – alluding to the official PMC recommendation of the Mediterranean Diet.

They encouraged heathy snacking with snacks such as almonds and cashews and passing on the butter for olive oil.

Additionally, the older adults shared the importance of activities such as volunteering and maintaining healthy social networks.

The newfound mentors were clear: It is difficult to change an unhealthy lifestyle after 50 years. The real opportunity for prevention is at age 16. ________________________________ Janice Bonsu was a public health intern with the Penn Memory Center and was part of the Penn Healthy Brain Research Center’s Public Health Dimensions of Cognitive Aging Certificate Program.

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A closer l

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Alzheimer’s disease diagnosis can lower quality of life PMC researchers have discovered that a patient’s awareness of a diagnosis of cognitive impairment may diminish their self-assessment of quality of life.

In a study recently published in the Journal of Gerontology: Psychological Sciences, the researchers report that older adults who were aware of their diagnoses — either mild cognitive impairment or mild stage Alzheimer’s disease dementia — reported greater depression, higher stress, and lower quality of life than those who were unaware. They also found that older adults who expected that their disease would worsen over time reported lower overall satisfaction with daily life.

“These findings suggest that a patient’s quality of life could be impacted by a diagnostic label and their expectations for the prognosis. So, when a clinician discloses the diagnosis and prognosis of mild cognitive impairment or mild stage Shana Stites Alzheimer’s disease, a patient may experience additional symptoms, like anxiety or depression,” said the study’s lead author, Shana Stites, PsyD, MA, MS, a clinical psychologist in the Penn Memory Center and senior research investigator for the Penn Project on Precision Medicine for the Brain.

For many years, a diagnosis of Alzheimer’s disease was often not made until a patient had substantial memory and cognitive problems — by which time patients themselves were often unaware of their diagnoses. Advances in awareness, as well in diagnostic methods, mean doctors are diagnosing Alzheimer’s disease earlier, and in the future, routine diagnosis may occur before symptoms even begin. Early diagnosis holds the promise for opportunities to prevent cognitive and functional losses and to plan for these losses. But study results show that an early diagnosis can also bring challenges.

Researchers studied how awareness of diagnosis impacts self-ratings of quality of life in people with one of two disorders: mild cognitive impairment — a disorder defined by slight but noticeable declines in cognitive abilities — or mild stage Alzheimer’s disease dementia. They compared these ratings to a group of adults above the age of 65 with normal cognition. Study participants completed measures of multiple domains of quality of life including cognitive INSIGHT

problems, activities of daily living, physical functioning, mental wellbeing, and perceptions of one’s daily life. The researchers compared the measure of quality of life by cognitive performance, diagnosis awareness, and diagnostic group.

The findings help to identify psychological processes underlying relationships between cognitive decline and quality of life.

“It’s not just an issue of to tell or not to tell, it’s an issue of how you tell and what you tell, because when you give someone a diagnosis, you’re also communicating, either directly or indirectly, a lot of information that can affect the activities people do in daily life, their planning for employment and lifestyle, emotional wellbeing, and social relationships with close friends and family members. These issues need to be explicitly addressed with patients,” Dr. Stites said. “Maybe at this point we can’t prevent cognitive decline, but we certainly have effective interventions for treating depression and for managing other symptoms.”

More study is needed to understand what drives the impact of awareness of diagnosis and prognosis on quality of life. Future studies might include pre-clinical research that is being done in Alzheimer’s disease, where clinicians are working to diagnose people who are at risk of developing the disease based on genes and biomarkers to determine how diagnosis awareness might affect an individual’s sense of identity and functioning in the world if they learn that they have a high probability of developing Alzheimer’s disease in the future.

A diagnosis of Alzheimer’s disease can evoke assumptions, stereotypes, feelings, and attitudes that can affect quality of life, how patients view themselves, and how they are treated by others. This study is part of the research team’s efforts to understand how early diagnosis can impact a person’s quality of life and wellbeing, and the results add to what the team has learned about the stigma of Alzheimer’s disease.

Co-authors from the Penn Memory Center include CoDirectors Jason Karlawish, MD, and David Wolk, MD, and Research Coordinator Kristin Harkins, MPH. This work was supported by The Marian S. Ware Alzheimer Program, the Diane Eisen Memorial Neurodegenerative Disease Research Fund, the National Institute of Aging, and the Centers for Disease Control and Prevention’s Healthy Brain Research Center.

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at our research The ADNI3 Study Researchers are currently enrolling participants with normal cognition as well as those with Mild Cognitive Impairment (MCI) and Alzheimer’s disease (AD) for the Alzheimer’s Disease Neuroimaging Initiative 3 (ADNI3), a non-treatment, longitudinal, clinical research study that will study subjects for up to five years to determine the best ways to measure disease biomarkers, as well as participant pathology and functional and cognitive decline if it occurs. The study will look at many factors on the spectrum of cognitive impairment and follow participants to see if their pathology progresses from normal aging to mild symptoms, MCI, dementia, or AD. After an initial screening and a baseline visit, researchers will use procedures such as MRI, PET, and CT scans for brain imaging, memory testing, physical and neurological exams, a lumbar puncture, and a blood draw to discover and/or validate biomarkers in AD research. Those who are between the ages of 65 and 85 and have normal cognition are eligible for the study, as well as those who are 55 to 90 and have a diagnosis of MCI or AD. Participants must be willing and able to consent to regular imaging and biomarker collection and must have a reliable study partner who will stay for the entirety of visits.

Data collected and analyzed from the study will be used to identify diagnostic markers, determine the best measures for disease monitoring, and facilitate the testing of therapeutic interventions with the ultimate goal of improving Alzheimer’s disease prevention, care, and research.

To learn more about the ADNI3 Study, contact PMC research coordinators Jessica Nuñez at 215-662-4379 or jessica.nunez@uphs.upenn.edu, and Nayoung Kim at 215-746-2559 or nayoung.kim@uphs.upenn.edu.

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The REVEAL-SCAN Study How would you respond to learning you have an elevated risk of developing Alzheimer’s disease? Whom would you tell, and what would you say? Using a PET scan, researchers at the Penn Memory Center are able to observe the presence of amyloid in the brain — considered an early biomarker for Alzheimer’s disease — and participants can learn whether they have an “elevated” buildup of amyloid.

Risk Evaluation and Education for Alzheimer’s Disease – the Study of Communicating Amyloid Neuroimaging (REVEAL-SCAN) is a clinical study in which subjects can learn two distinct results: first, the result of an amyloid PET scan; and second, a personal estimated risk of developing Alzheimer’s disease dementia by the age of 85.

The purpose of the REVEAL-SCAN study is to follow up with participants six to seven months after participants learn their estimated risk in order to study how they interpret, cope, and adapt to the information by measuring health behaviors and habits over time in the study. Participants’ memory, thinking, and emotional wellbeing are also actively measured throughout the study.

Amyloid can build up in the brain more than a decade before any symptoms of Alzheimer’s are exhibited. Many studies now focus on testing treatments in pre-clinical populations who may have amyloid deposition in the brain but do not have obvious symptoms of cognitive impairment. One such trial, the Anti-Amyloid Treatment in Asymptomatic Alzheimer’s (A4) study, is underway at PMC. With the possibility of a pre-clinical diagnosis of Alzheimer’s disease becoming standard practice, it’s important to understand the impact of arming individuals with this risk result information, as well as determining the best way to communicate this sensitive information to research participants and patients in the future.

Adults ages 65 to 80 with normal cognition who have a parent or sibling affected by Alzheimer’s disease may be eligible to participate.

For more information on the study, please contact research coordinator Joseph Harrison at 215-662-6093 or joseph.harrison@uphs.upenn.edu.

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The Wisdom of My Patient, Bill Lyon As an award-winning Philadelphia Inquirer sportswriter for more than 40 years, Bill Lyon has seen both the pain and the triumph of the game. Now, Lyon is fighting his own battle, living with Alzheimer’s disease.

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he moment the woman spoke out, I wished we had the cameras running.

We were in the lobby of Wesley Enhanced Living, a continuing care retirement community, with retired Jason Karlawish Inquirer sports columnist Bill Lyon and Ethel, his wife. After the couple’s 42 years of living in a four-bedroom, three-story house in Broomall, Bill’s Alzheimer’s had made life in that house too difficult. First he lost the car, then he got a cane, now “enhanced” living.

We were meeting Bill in his new home to interview him about how he became an Alzheimer’s writer.

Some visitors were preparing to depart when one of them called out from the other side of the lobby.

“You’re the columnist? The Alzheimer’s columns, right?”

Bill smiled, nodded, and introduced himself. She was on her feet and making for him like a winning teammate at the final buzzer.

“I love your columns,” she announced. “My husband had it, had Alzheimer’s. He’s gone now. … Everything you said, it’s so true.” They embraced like champions.

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Lyon was 75 when he was diagnosed at the Penn Memory Center. After writing an initial series of five columns for The Inquirer in 2016, Lyon has continued to write periodically about his experience.

Lyon recently sat down with his doctor, PMC Co-Director Jason Karlawish, to discuss what he’s learned about himself, his disease, and his readers in the last two years. Dr. Karlawish wrote the following column for The Inquirer in early October. Learn more and find links to all of Lyon’s and Karlawish’s columns at www.pennmemorycenter.org/lyon.

Just over one year ago, I first wrote about my patient, Bill Lyon. I explained his diagnosis (“posterior cortical atrophy,” an uncommon form of the disease whose initial symptoms are problems with depth perception and attention) and the steps he, his family, and I — “the guy in the white coat” — had taken to diagnose and then treat his disease.

Today, I’m explaining what I’ve learned about being a patient by listening to my patient. Researchers are hard at work trying to discover better treatments. Bill, though neither scientist nor physician, has been hard at work on a treatment as well. He’s discovered a powerful medicine. Just ask the woman who embraced him.

In the weeks and months after I diagnosed him, he hid his diagnosis.

“I didn’t want to be around crowds anymore. I would be off by myself. I was like a loner.” His feelings of isolation were changing him. He wor-

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ried people would treat him differently, would think less of him. He worried they would go out of their way to avoid him. “It was almost like you’re a leper,” he reflected.

The stigmata of Alzheimer’s is a cruel mark upon a person. Bill observed how, unlike a disease that physically marks you, such as measles or mumps, Alzheimer’s is hidden until you choose to engage with people. That’s when the problems come out. The troubles finding words, the tremor. And that’s why he hid in plain sight.

But then he started to change.

Slowly and then all at once, he came to see Alzheimer’s as not just a personal disease, but a family one, because whether as patient, caregiver, or family member, we all have Alzheimer’s. If we shun the person with the disease, if the person hides, then we’re hiding from one another. We’re shaming ourselves.

He decided to change the culture,

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“

“

It became a crusade on my part. I wanted to explain to people, just because you have Alzheimer’s disease, it doesn’t mean you’re an outcast.

- Bill Lyon

Chloe Elmer / Penn Memory Center Dr. Jason Karlawish speaks with Bill Lyon at Wesley Enhanced Living, Lyon’s continuing care retirement community.

to challenge the norm that we avoid people with Alzheimer’s, a norm that makes the person with the disease feel ashamed and so hide from others, and so feel more shame.

And so on into an abyss.

This six-time Pulitzer finalist who’d made his reputation with hundreds of essays about athletes, people pushing the limits of their physical and mental powers, decided to use his talent to tell the story of losing his powers. Giving up driving, turning finances over to trusted others, taking up a cane, wearing diapers, enduring tremors. A sense of hopelessness.

“It became a crusade on my part,” Bill tells me. “I wanted to explain to people, just because you have INSIGHT

Alzheimer’s disease, it doesn’t mean you’re an outcast.”

as possible. As his disease carries on, the craft is harder to practice.

Bill’s essays aren’t just about living with Alzheimer’s. They’re about living with life’s burdens. “We all have a load to bear,” he explains. “The load takes many different forms, but there’s something that’s on your shoulders, and it’s up to you to do something about it.” One of those choices is to start talking about our fears. “Why not try to do something? Try and create something good out of something bad.”

He’s bleeding in other ways, too.

Writing about his and Ethel’s life with Al has shed their privacy.

He has offered up himself and his world to us, giving up himself so that others may learn more about themselves.

It has been bad, and it’s getting worse. Bill observed to me how to write is to bleed. He was talking about the struggle of practicing the craft, of getting the right word and keeping subject and action as close

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Bill took a big and uncommon risk, and his sacrifice is our reward. We feel not only our sufferings, but also the sufferings of others. We are Bill.

And Ethel. We are the woman in the lobby moved to embrace him. ____________________________ Jason Karlawish is a Professor of Medicine, Medical Ethics and Health Policy, and Neurology at the University of Pennsylvania.

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Progress against Alzheimer’s disease depends on your support for our research, programs and patient care.

With gratitude, we recognize our donors Gifts received between November 1, 2016 and October 9, 2017.

Gifts of $10,000 Artis Senior Living of Lower Moreland Hofmann Family Fund Mr. Thomas W. Hofmann Mrs. Katherine Hofmann Melland Family Foundation Mr. Scot W. Melland Ms. Lisa A. Melland

Gifts of $5,000 Mr. Martin Krimsky and Mrs. Merle Gross Krimsky

Gifts of $2,000 lzheimer’s disease threatens to become the largest and most costly public health crisis ever faced by our nation. Yet federal and other funding for our efforts continues to lag. This hard reality makes your tax-deductible gifts and bequests even more vital now to aid our research and nurture our advances.

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We recognize donors here and on our website at www.pennmemorycenter.org. To view the list, click on “Gifts” and then “Our Proud Donors.”

Planned giving, matching gift programs, and a range of tax-advantageous structured giving approaches are also available. To learn more about how your support can strengthen and advance the work of the Penn Memory Center, please contact Elizabeth Yannes at (215) 573-4961 or elyannes@upenn.edu.

Thank you, Jason Karlawish and David Wolk Penn Memory Center Co-Directors

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Mrs. Catherine P. Durkin Henry S. Cecil, MD and Elizabeth M. Cecil, Esq.

Gifts of $1,500 In memory of Gerard Thomas Peter Thomas, DO

Gifts of $1,000

Mr. Lawrence A. Marcus and Mrs. Nancy Schneider Marcus In honor of Steven E. Arnold, MD Fern G. Fried, MD and Richard G. Fried, MD, PhD In memory of Mary Braun Graham Foundation Mr. Andy Jefferson Mrs. Heather Jefferson In memory of Ruth Buzby Mr. John S. Buzby, Sr.

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In memory of Dr. William Minster Mr. Fred Mitterhoff Fasano Acchione & Associates, LLC In memory of Charlotte Taule Mr. Philip Okala

Gifts of $500-$999 Deutsche Bank Ms. Kathy L. Drew Mr. Kenneth Hummel Steve T. Min, Esq. and Mrs. Misun A. Min Mr. Brian Bergin Rigney In memory of Terence Dalton Hawthorn Group, LC In memory of A. Joyce Gallen Ms. Ann L. Jones In honor of Jason H. Karlawish, MD Half Past Nine, Inc.

Gifts of $200-499 Anonymous Alan R. Cohen, MD Mrs. Vivian P. Colson Mr. Dave Cronomiz Ms. Mary Dunn Mr. Stephen J. Kieran Mr. and Mrs. J. K. Mccammon Mrs. Cornelia H. Seidel Ms. Aelaina N. Sellers Shmerler Foundation, Inc. Ms. Cindy Shmerler Levy Mr. Ford J. Levy Ms. Kristen E. Levy Mr. Maxwell H. Levy In memory of Barbara Armstrong Ms. Karen Armstrong In memory of Howard D. Arnold Mrs. Gudrun Weis Arnold

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Caregiver: ‘Imperative’ PMC continue to grow Dear Reader: My name is Alan Cohen, and I am writing to you both as the caregiver for my courageous wife, a patient at the Penn Memory Center, and as a doctor who has been personally engaged in clinical care and research for more than forty years. I am asking you to join me in honoring and supporting the Center’s incredible team of physicians, scientists, nurses, social workers, and all of their associates, who deliver extraordinary patient care while performing cutting-edge research to discover new and more effective treatments for Alzheimer’s disease and other memory disorders. My wife and I have seen firsthand how all of the critical parts of the Penn Memory Center — research, patient care, and programming and counseling for caregivers — enhance each other while supporting families like ours.

At the Center, our care comes from our country’s leading medical specialists who have many decades of experience caring for individuals with Alzheimer’s disease, mild cognitive impairment, and related memory problems.

As a caregiver, I gratefully receive personalized counseling, support from health educators, and many other resources that are made available to me and my family in an environment of warmth and empathy. The Center provides classes that give us and other families the skills to cope with the many changes of living with dementia and provide the opportunity to meet others going through a similar experience.

It is imperative that the Penn Memory Center continue to grow and expand the reach of this work. Grant funding supports the basic infrastructure of the Center and reflects its international stature. However, individual gifts from patients, families, friends, and other benefactors are vital, as these are the gifts that allow the Center to pursue and sustain innovative efforts in clinical research and caregiver support. In my own work with children with blood diseases, I have seen how extraordinary advances in the fight against disease emerge almost exclusively when programs that address the needs of patients and caregivers are fully integrated with research, and I am absolutely convinced that this strategy at the Penn Memory Center is the key to changing the lives of patients with Alzheimer’s disease and other memory disorders.

As a caregiver, I am very appreciative of the support and education that I receive from the Penn Memory Center.

I know that these services are funded by ongoing, unrestricted donations from friends like you and can advance only with your help. So in this season of giving and thanks, I hope you join me in making a gift to the Penn Memory Center to help advance its vital programs and services.

A contribution form and reply envelope are enclosed for your convenience. Thank you for your consideration, and best wishes for a happy holiday season.

Sincerely, Alan Cohen, MD Professor and Emeritus Chair of Pediatrics Perelman School of Medicine at the University of Pennsylvania P.S. Make your gift today in honor or memory of a loved one. You can make your gift online by visiting our website, www.pennmemorycenter.org/gifts. Your tribute will be displayed in the next issue of InSight, unless you indicate otherwise. If you would like more information about the ways you can support our research funds, please contact Aubre Naughton at 215-898-9174 or aubren@upenn.edu.

INSIGHT

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Caplan pledges $2M to support ‘Caring Difference’

by Chloe Elmer

our years ago, frustrated by a series of inconclusive visits to other doctors, Eli and Janet Caplan scheduled an appointment with the Penn Memory Center, where Janet finally received the diagnosis they needed to hear: Alzheimer’s disease.

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“I would give everything I have not to have known the Penn Memory Center,” said Eli Caplan, “but since I’m one of the unfortunate persons to have a loved one afflicted with the most scourging disease, Alzheimer’s, I’m grateful to be here.”

The Caplans live in Philadelphia, close to the Penn Memory Center, where Janet regularly sees Co-Director Dr. David Wolk for neurological appointments and Eli sees Felicia Greenfield, director of clinical research operations and care programs, for caregiver-related therapy sessions.

Caplan is able to provide around-theclock care for his wife between four caregivers who rotate shifts, so that neither he nor his wife is ever alone. “He can’t imagine how other people care for someone with Alzheimer’s disease without the financial means,” said Felicia Greenfield. “He feels he has to do something to help others.”

It is due to his experience with his wife’s diagnosis as well as his relationships with Greenfield and the Penn Memory Center that Caplan decided to sponsor The Caplan Caring Difference Fund. The fund provides help to other caregivers in need of support, allowing the Penn Memory Center to expand programmatic offerings to support more people in more creative ways than ever before.

“Of course our mission at the Memory Center is to cure Alzheimer’s disease,” said Greenfield. “But until we do that, we have to find a way to take care of people INSIGHT

Daniel Burke / For Penn Medicine Eli Caplan (back left) poses with wife Janet (left) and other family members at their home the night of Janet’s birthday celebration. Caplan had announced a gift of $2 million to the Penn Memory Center at the event. Find other donations to this fund on the back cover.

well and help them live the best quality of life possible with this disease — and Eli recognizes that.”

In September, Caplan threw a party for Janet’s birthday at his Rittenhouse Square home. At this event, he and his immediate family pledged a gift of $2 million to the Penn Memory Center and the Caplan Caring Difference Fund.

With support from the fund, PMC’s caregiving classes — which normally cost participants $200 — will be free-ofcharge to participants this year.

The Caplan Family Caring Difference Fund — through the Julius H. Caplan Charity Foundation — provides financial support for expenses related to psychosocial, care, and research programs at PMC. It will also support the education and training of caregivers as well as advanced degree students studying Alzheimer’s disease and related dementias.

The fund will also support family and community education, individual psy-

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chotherapy for patients and caregivers, and ongoing support groups. The fund will help cover the costs associated with community engagement programming, such as a volunteer partnership program with Children’s Hospital of Philadelphia, access to in-home music by Curtis Institute of Music students, monthly memory cafés to support social and cultural engagement, and improv comedy workshops.

“Finally, funds will be used to support the research and evaluation of these quality of life/intervention programs as well as other research to support the mission of the PMC,” Greenfield said.

Caplan hopes he will witness the day a cure for Alzheimer’s is found, but until then, he will use this fund to keep PMC viable, adding, “I owe everything that I have to the Penn Memory Center.” ________________________________ Chloe Elmer was a Penn Memory Center communications intern in 2017. She is now a freelance photographer. Her work can be found at www.chloeelmer.com.

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In memory of John A. Cornell Diane J. Cornell, Esq. In memory of Ann Criel Mr. Daniel Criel In memory of Terence Dalton Mr. James T. Buzinski In memory of Carmencita Kasulis Mr. Daniel Criel In memory of Helen Knowles Mrs. Mary Ellen Gibbons In memory of Dr. William Minster Ms. Dorothy Manson Mrs. Beatriz Sampedro Mr. David J. Smith In memory of Donald V. Rhoads, MD Mrs. Marianne S. Rhoads In memory of Lorraine Rosenberg Mr. Hersh Kozlov In memory of Joanne K. Ruser Ms. Margaret Russell In memory of Charlotte Taule Nancy Winneberger

In memory of Barbara Armstrong Ms. Kathleen Devlin

In memory of Nancy Winneberger Mr. and Mrs. K. J. Shields

In memory of Dr. Norman Berger Joan Berger Living Trust

Gifts of $100-199 Mr. James J. Bruder and Mrs. Maripeg Bruder Mrs. Judith Cassidy Mrs. Kathleen Regan Dalzell and The Hon. Stewart Dalzell* Mr. Emil Fish Dr. Pamela P. Freyd and Dr. Peter Freyd INSIGHT

Friends Center City Retirement Community Exelon Corporation Chester T. Cyzio, Esq. and Mrs. Helen McElroy-Cyzio William H. Gumprecht Rev. Trust Geneva V. Harris, PhD Ms. Shirley M. Hunt Mr. and Mrs. Michael A. Iacocca Mr. John J. Keating Kramer Beverage Co., Inc. Mrs. Catherine M. Lawrence and Mr. William T. Lawrence Mrs. Ruth Sarah Lee Mr. Carter R. Leidy, Jr. Mrs. Nancy S. Lonsdale LuLaRoe, Inc. Mr. Joseph M. Nicoletti Mr. and Mrs. Jim Norton Mr. and Mrs. John Peakes Dr. Hermann W. Pfefferkorn Mr. and Mrs. Bernard Roth Ms. Frances Park-Li Rothman Ms. Terraine Smith Mr. and Mrs. Jeffrey Sutton Mrs. Nancy F. Ring Mr. John N. Rudolph, Jr. Mr. Albanus R. Ryland, Jr. and Mrs. Cecile Y. Ryland Ms. Carolyn L. Whitaker

In memory of William and Mary Bilko Ms. Lisa Bilko In memory of Patricia Buck HMK Insurance In honor of John Bruza, MD and Jason H. Karlawish, MD Mr. Graeme Clapp and Ms. Anne Wright

Your gifts make our efforts possible.

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hen contemplating your own memorial arrangements or those of a loved one, please consider an obituary request that, instead of flowers, directs donations for Alzheimer’s research at the Penn Memory Center to: “Trustees of the University of Pennsylvania” (write “ADC-PMC” on the memo line) and mailed to: Penn Memory Center (Attn: Terrence Casey) 3615 Chestnut Street Philadelphia, PA 19104

In memory of Mary Bryson Mr. William Bryson

In memory of Ray Kaplan Ms. Nadine Flexer

In memory of Mona Cheung Mr. Jeffrey T. H. Cheung*

In memory of Cynthia Hamill Mr. and Mrs. Harry M. Stephey, Jr.

In memory of Mary Curtin Dr. Patricia M. Curtin In memory of Terence Dalton Mr. and Mrs. Chester W. Dawson Mr. and Mrs. Steven P. Heidecker Ms. Lisa Iannello Mr. and Mrs. Thomas A. Little Mr. and Mrs. Charles R. Smith Mr. and Mrs. Currie K. Thompson In memory of Mary Evelyn Dietz Exelon Corporation In memory of James H. Erwin, Jr. JT Lockington Consulting LLC Ms. Laura Hendrick Mrs. Mary Orr Noe In memory of Salvatore Fiorille Ms. Sally Ann Krakora

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In memory of Elizabeth M. Hann Mrs. Sharon L. Bernhardt Mrs. Cynthia M. Rufo In memory of Elizabeth Naismith Harlacher 712 Associates Colonial Used Auto Sales, Inc. Mr. William P. Douglass Mrs. Ruth A. MacWilliams Mr. and Mrs. Ralph A. Matergia Mr. James Mick Monroe County Bar Foundation Wiggle Inn Hunting & Fishing Club Inc. In honor of Jason H. Karlawish, MD Mrs. Pauline Lacas Catrickes and Mr. James C. Catrickes In memory of Paul Katriel Dr. Ron G. Katriel

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In memory of Lillian M Ludwig Ms. Patricia J. Ludwig

In memory of Joanne K. Ruser Ms. Katharine J. Hart Ms. Lisa A. Roberts

In memory of Sam Mayo Ms. Nadine Flexer*

In memory of Vilma Santy Ms. Katharine J. Hart

In memory of Katherine McMenamin Mr. Kevin W. Kolmer, Sr. and Mrs. Jennifer R. Kolmer Alexander Lin, MD In memory of Dr. William Minster Mr. Scott Bourdon Mr. Steve Lallier Mr. Hugh J. Maher Mr. Matt Stevens

In memory of Dr. J. Clay Smith, Jr. Ms. Andrea D. Williams In memory of Thomas Paul Steiner Ms. Prudence Dalrymple

In memory of Seena Molinoff Mr. Jeffrey l. Molinoff In memory of Helen Foster Morgan Ms. Natalie M. Macy In memory of Gary R. Myers Mrs. Lillian E. Myers In honor of Theresa Nicoletti Mr. George Sowa In memory of Dr. Bernadine Paulshock Ms. Abbe I. Binstock In memory of Leon “Pete” Peezick Mr. David A. Winoski In memory of Lorraine Rosenberg Ms. Eve P. Cohen Mrs. Sanja Friedant Ms. Nan Piper Kochanski Ms. Sandra Mackler Ms. Marcy Rubin Mrs. Erika A. Yablonovitz and Mr. Seth J. Yablonovitz INSIGHT

In memory of Leonard Schiff Ms. Cindy W. Yowell

In memory of Veronica Suscavage Mrs. Ann V. Sacks Mrs. Barbara A. Viola In memory of Charlotte Taule Ms. LuAnn Brady Ms. Julie L. Tishler Mrs. Bonnie F. Welch and William C. Welch, MD In memory of Robert Warburton Dynamic Modern Dentistry, LLC In memory of Nancy Winneberger Ms. Cathleen J. Baker Ms. Barb Bense In memory of Cathy F. Wilson Mr. Graeme Clapp and Ms. Anne Wright

Gifts of up to $99 American Endowment Foundation Ms. Judy Basara Mr. and Mrs. Glenn Bechtel Mr. and Mrs. Alfred F. Beers

Mrs. Margaret A. Beretzki Ms. Shira Blady Ms. Vernice Bond Ms. Geraldine M. Boyle Mr. Robert T. Butler Mr. Tony Centifonti Ms. Florence L. Collins Ms. Martha Combs Ms. A. Marlane Creedon Mr. and Mrs. Eric Cutler Mrs. Elizabeth B. Delaney and Mr. James P. Delaney Mrs. Anne Dienna Ms. Marie E. DiMatties Mrs. Miriam R. Faktorow and Mr. Sheldon Faktorow Mrs. Edith A. Ferris Ms. Hortensia Formoso Ms. Carol Forvour Mrs. Lorraine Grady Ms. Felicia Greenfield Mr. Barry L. Grossbach Arnold J. Gould, Esq. and Mrs. Leslie Jay Gould Mr. Michael D. Hardy Mr. Joseph Harrison Mr. Harry R. Hicks Ms. Gloria B. Hopkins IBM Corporation Mr. Zeeshan R. Khan Mr. John P. Kilroy Mrs. Rosemarie Krauss Mr. William D. Lynch Mr. and Mrs. George Maalouf Ms. Carol H. Mahony and Mr. Ieuan G. Mahony Mr. and Mrs. Nicholas J. Mastrocola Mrs. Antoinette J. McDonald Ms. Taylor Mcllhenny Mr. and Mrs. James McKenna Ms. Jan McMeekin Dr. Dawn Mechanic-Hamilton Mrs. Evelyn Adams Nicoletti and Mr. Rocco Nicoletti Mr. Victor Kodzo Ofori Mr. Reid Overturf Mr. and Mrs. Brent L. Peterson

newsletter of the penn memory center

Ms. Aneira Puttaswamy Ms. Mary Reidy Mr. and Mrs. Richard A. Pinho Prudential Insurance Company of America Ms. Julie Rouvina Ms. Adrienne D. Seligman Mrs. Paola L. Shore and Mr. William H. Shore Ms. Nancy R. Simpers Ms. Rheta R. Smith Ms. Lynnea Solberg Laurence A. Somers, MD and Mrs. Myra S. Somers Mr. and Mrs. Bo Sorman Ms. Grace Stockbower Mr. and Mrs. Frank Suplick Mrs. Linda Tarash Ms. Yenche Tioanda Mr. Kevin VanHorn Ms. Liz VanHorn Mr. and Mrs. Joseph Viola Mr. Damien Weinkrantz Ms. Virginia Whittington In memory of Barbara Armstrong Ms. Karen Armstrong Ms. Elaine Farashian Ms. Marie S. Tomasso In memory of Kathy Considine Mr. Larry Borden and Mrs. Tatiana Borden In memory of Terence Dalton Ms. Victoria Angis Mr. and Mrs. Myron Blankenship Mr. and Mrs. Gary F. Ciocco Mr. and Mrs. Charles C. DuBois Mr. and Mrs. Michele M. Garguilo Mr. Kenneth Gilliam Mrs. Lynn Huntington-Meath Miss Priscilla A. Ord Systems Planning and Analysis, Inc. Ms. Connie L. Wehler

fall 2017 / winter 2018

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In memory of Bruno DeSimone Mrs. Debra D. Macchi and Paul J. Macchi, MD In memory of Eric P. Erhart Ms. Ellen Erhart In memory of James H. Erwin, Jr. Mr. Edward Broda Ms. Karen G. Kane-Pizzone Ms. Dorothy A. Lastichen Mr. and Mrs. William Lockington Ms. Linda G. Marsh Mr. and Mrs. David W. Martin Ms. Sheila R. Schaal Ms. Courtney Staerk Ms. Geraldine Szakacs Ms. Judith A. Tipton Mr. and Mrs. Martin L. VanArsdale In memory of Dorothy G. Mr. James H. Edwards In memory of A. Joyce Gallen Mr. Robert F. Burns Mr. and Mrs. J. Hohenstein Mrs. Kathryn C. Jones Mr. Paul Karosas Mr. Isidore Ricciuti In memory of Rosemary Hines Green Mr. James J. McPhillips and Ms. Karen S. McPhillips In memory of Elizabeth Naismith Harlacher Mr. Robert Barrow Mr. and Mrs. Jere Dunkelberger Gary’s Meat Market Mr. Stephen Higgins Mr. and Mrs. Maria Horn Howard and Jill Fragin Revocable Trust Mrs. Linda J. Matthews Mr. and Mrs. Ramon B. Molina Craig S. Ott, V.M.D. INSIGHT

Ms. Claire M. Parker Pocono Pistol Club, LLC Ms. Autumn C. Scott Mrs. Elizabeth J. Slocum Frank J. Smith, Jr., Inc. Ms. Peggy Williams In memory of Dr. Richard Kendall Ms. Nadine Flexer In memory of Akram Ali Khan Mr. Zeeshan R. Khan In memory of Estelle Klevan Anonymous In memory of Mary E. McMackin Mr. Robert F. McMackin In memory of Katherine McMenamin Michelle Alonso-Bastanta, MD Ms. Rachel Bogatin Ms. Lauren Clanet Robert A. Lustig, MD Ms. Jane M. Schoener In memory of Dr. William Minster Mrs. Maria Branco Mr. Dale Braue Mrs. Anna B. Dime Ms. Virginia T. Fessler Ms. Heike Kilgore Mr. Steven Lepere Mr. Bob Marshall Ms. Constance B. Mueller Mr. and Mrs. Dave Vagnoni In memory of Gary R. Myers Mr. Donald Burkhart Mr. and Mrs. James G. Duprey Mr. Jim Keener Mr. David J. Russell In honor of Theresa Nicoletti Mr. Harry Clark Mr. Ed Moran Mr. Ronald I. Woodmansee

Make a gift online: www.pennmemorycenter.org/gifts.

In memory of Teresa Ross Ottiano Mrs. Kandie A. Press and Mr. Howard Press In memory of Lorraine Rosenberg Mr. and Mrs. Steven Cohen Ms. Suzanne Glickstein Ms. Marci Goldman Ms. Barbara Ann Jacobson Dr. Joanna Kallan Mr. Peter C. Kleiner Ms. Candace Kuhns Ms. Judith F. Miller Mr. and Mrs. Howard Raymond In memory of Joanne K. Ruser Ms. Rosemary L. Brandt Ms. Paula Ecker Ms. Brenda R. MacRae Ms. Janet McMeekin In memory of Roland Singer Mrs. Leigh J. Cooper and Mr. Matthew B. Cooper In memory of Evelyn J. Sitkoff Mrs. Holly Goldberg In memory of Veronica Suscavage Mr. Dale Abraham Ms. Nancy T. Kerly Ladies of the De La Salle Mrs. Ann V. Sacks In memory of Charlotte Taule Mr. and Mrs. Arthur S. Alperstein Mr. Sean Berenholtz Mr. and Mrs. Donald B. Campbell, Jr. Mrs. Loriann Gagliardi and Mr. Michael R. Gagliardi Mr. and Mrs. Jason Gordon Ms. Jennifer L. Hoffmann

newsletter of the penn memory center

Ms. Susan L. London Ms. Tori Manis Ms. Sandra Moffet Dr. & Mrs. Allan J. Monfried Mr. Daniel S. Mozes and Mrs. Julie Mozes Mrs. Ilene Powers Mr. Jonathan D. Rosen and Mrs. Jill M. Rosen Ms. Colleen Scullin Mrs. Allyson Tanner In memory of George M. Ulmer, Jr. Mr. Dennis O’Leary In memory of Douglas Warburton Mrs. Maureen Bear Ms. Virginia H. Killeen In memory of Nancy J. Winneberger Elkridge Volunteer Fire Department, Inc. Ms. Joan C. Gravitz Mr. and Mrs. Gary Jessel Ms. Jane L. Johnston Mrs. Ruth Marcus Kanter Ms. Cynthia Schanbacher Mr. J. Andrew Sharkey Ms. Patricia Sharkey Mr. David West Ms. Alice Wolf In memory of Carl A. Wisneski Ms. Pauline Amalfitano In memory of Gloria Woodard Ms. Barbara H. Johnson In memory of Geraldine M. Zirilli Mr. James H. Davidson *Denotes a contribution made to the Making Sense of Alzheimer’s Gift Fund at the Penn Memory Center.

fall 2017 / winter 2018

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PENN MEMORY CENTER

NON-PROFIT ORG

PERELMAN CENTER FOR ADVANCED MEDICINE

U.S. POSTAGE

3400 CIVIC CENTER BOULEVARD

PAID PERMIT NO. 2563

2ND FLOOR, SOUTH PAVILION

PHILA, PA. 19104

PHILADELPHIA, PA 19104

Gifts to the Caplan Caring Difference Fund On people and efforts that bring the knowledge we seek on Alzheimer’s disease and lifelong brain health ever closer in sight.

PUBLISHER Jason Karlawish jason.karlawish@uphs.upenn.edu EDITOR Terrence Casey terrence.casey@uphs.upenn.edu 215-898-9979 CONTRIBUTORS Janice Bonsu Chloe Elmer Joyce Lee David Ney OFFICE 3615 Chestnut Street Philadelphia, PA 19104 www.pennmemorycenter.org www.makingsenseofalzheimers.org Follow us on Facebook https://www.facebook.com/ PennMemoryCenter l The Penn Memory Center is a National Institute on Agingdesignated Alzheimer’s Disease Center (ADC), one of only 29 such centers in the United States, and the only one in our tri-state region. l Our staff and programs are dedicated to research in Alzheimer’s disease, age-related cognitive problems, lifelong brain health and improving the well-being of our patients and their families. l Produced by the Penn Memory Center, part of Penn Medicine.

We welcome and encourage your questions, comments, suggestions and gifts.

PRINTING Fort Nassau Graphics http://fortnassaugraphics.net/

Thank you to the supporters of the Caplan Caring Difference Fund, supporting the ‘Caring Difference’ at the Penn Memory Center.

To contribute, visit www.pennmemorycenter.org/caplan.

Leadership Gift: $2 million Julius H. Caplan Charity Foundation Mr. Eli Caplan Mrs. Janet D. Caplan Mr. Perry C. Caplan Mr. Sloan Caplan

Additional Gifts Mrs. Denise M. Bollard and Dr. Edward R. Bollard Ms. Ellen Burke and Mr. Raymond M. Burke Ms. Prudence Dalrymple Mrs. Joanne Davidow and Mr. Don Davidow Mr. and Mrs. Francis J. Dixon Mr. Evan Evelev Mr. and Mrs. Joseph Field Mrs. Barbara L. Fishbein and Mr. Michael D. Fishbein Ms. Nadine Flexer Mr. and Mrs. Kevin Fowler Mrs. Kathleen L. Hetrick and Mr. Ronald Hetrick Key Foundation Mr. and Mrs. Martin Margolis Mr. and Mrs. M. Kiriacoulacos Mr. Frederick C. Laurenzo

Dr. Philip D. Levinson Miller Family Foundation Ms. Dolores Miller Ms. Luana Neducsin and Mr. Daniel Neducsin Ms. Pamela Rosenau Ms. Sharlene Ferrin and Dr. Jay Schinfeld Ms. Susan Shea Mr. and Mrs. Ofer Shlomo Murray M. Spain Revocable Trust Mr. Murray Spain Mrs. Marjorie W. Weingarten and Mr. Bryan S. Weingarten Mrs. Etta Zuritsky Winigrad Mrs. Kathryn R. Wolfson and Mr. Fred Wolfson Mrs. Renee Stern Zuritsky and Mr. Joseph Zuritsky