Alzheimerâ€™s Awareness Navigating Caregiving
To eliminate Alzheimerâ€™s disease through the advancement of research; to provide and enhance care and support for all affected; and to reduce the risk of dementia through the promotion of brain health.
Navigating Caregiving: Join the movement to end Alzheimer’s during Alzheimer’s & Brain Awareness Month
Alzheimer’s Association, California Central Chapter Santa Barbara
1528 Chapala Street, Suite 204 Santa Barbara, CA 93101 805.892.4259
120 East Jones Street, Suite 113 Santa Maria, CA 93454 805.636.6432
145 Hodencamp Road, Suite 205 Thousand Oaks, CA 91360 805.494.5200
2 June 2017 / Alzheimers Awareness Guide / Lee Central Coast Newspapers
San Luis Obispo County
3232 S. Higuera Street, Suite 101A San Luis Obispo, CA 93401 805.547.3830
June is Alzheimer’s & Brain Awareness Month and the Alzheimer’s Association® needs you to join the crew and raise awareness about Alzheimer’s disease and other dementias. Everyone who has a brain is at risk to develop Alzheimer’s, a disease that is often misunderstood. Did you know: • Alzheimer’s is fatal. It kills more than breast and prostate cancer combined. • Alzheimer’s is not normal aging. It’s a progressive brain disease without any cure. • Alzheimer’s is more than memory loss. It appears through a variety of signs and symptoms. The purpose of Navigating Caregiving is to help equip caregivers with some of the tools they might need as they journey through the world of caregiving. The goal of this insert is to offer information and an understanding of the disease, provide engagement opportunities and empower those affected by the disease. During the month of June, the Alzheimer’s Association asks you to learn more about Alzheimer’s,
share your story and take action. Visit alz.org/abam to: • Learn and share the facts about Alzheimer’s. • Get inspired by powerful stories of people sharing their experiences with the disease. • Go purple — the color of Alzheimer’s awareness — on Facebook, Twitter and more! • Honor those facing the disease by participating in the Alzheimer’s Association The Longest Day on June 21. Sign up or donate at alz.org/thelongestday. Please enjoy this publication, refer to it often, or pass it on to a neighbor or loved one in need. Feel free to call us with questions. We are here to help. Spread the word about Alzheimer’s by using #ENDALZ on social media this June! Visit alz.org/abam to get started. Sincerely, Donna Beal, MPH, MCHES Vice President, Program Services & Advocacy Alzheimer’s Association California Central Chapter www.alz.org/cacentral 24 Hour Hotline: 1-800-272-3900
California Central Chapter 2017 Events EDUCATION
WALK TO END ALZHEIMERS® (cont.)
Solvang Empowering the Caregiver Resource Fair Saturday, June 24
Oxnard - The Collection at RiverPark Saturday, September 30
Oxnard Empowering the Caregiver Resource Fair Saturday, November 4
Bakersfield - The Park at River Walk Saturday, October 21
Santa Maria Empowering the Caregiver Resource Fair Saturday, November 4
Thousand Oaks - California Lutheran University Saturday, October 21
ALZHEIMER’S & BRAIN AWARENESS MONTH®
The Longest Day® Wednesday, July 22
Alzheimer’s Association, California Central Chapter
RivALZ: BLONDES VS. BRUNETTES®
WALK TO END ALZHEIMERS®
Alzheimer’s Association, California Central Chapter
Santa Barbara - Bishop Diego High School Saturday, July 22 Santa Maria - Waller Park Saturday, September 30
San Luis Obispo - Mission Plaza Saturday, October 28 Santa Barbara - Fess Parker DoubleTree Resort Saturday, October 28
ALZHEIMER’S WOMEN’S INITIATIVE ‘Your Brain Matters’ Luncheon & Gargiver Awards Fess Parker DoubleTree Resort Wednesday, November 8
For more information about our upcoming events or our program services, please contact our 24-hour hotline 800.272.3900 | alz.org/cacentral
Ashley Lee / Communications Manager
oday, there are more than 5 million Americans (almost two-thirds of whom are women) living with Alzheimer’s, which is the only leading cause of death that cannot be prevented, cured or even slowed. An additional 15 million Americans serve as unpaid caregivers for individuals living with the disease. Alzheimer’s is the nation’s most expensive disease, costing $259 billion in 2017 alone. Nearly one in every five Medicare dollars is spent on those living with Alzheimer’s, and by 2050 it will be more than one in every three dollars. 2017 has been an eventful year so far for the Alzheimer’s Association, and the world of Alzheimer’s disease and dementia research. Along with the joint effort between the Alzheimer’s Association and the Alzheimer’s Impact Movement to secure a $400 million federal research increase at the National Institutes of Health (NIH), there have been major research insights. The Alzheimer’s Association, the Alzheimer’s Impact Movement, and its
nationwide network of advocates worked hard to call Congress for action in the fight to end Alzheimer’s. On May 5, 2017, a $400 million increase in Alzheimer’s research funding was signed into law, increasing federal funding at the NIH to nearly $1.4 billion. After years of stagnant funding, this is the second year in a row the Alzheimer’s Association request for historic funding increases has been actually acted on by our nation’s leaders. In research news, a new study published in the American Heart Association’s journal Stroke describes a possible association between artificially sweetened soft drinks and risk of stroke and dementia. Participants in the Framingham Heart Study who reported drinking one or more artificially sweetened beverage daily, compared to less than one a week, had almost three times the risk of developing either stroke or dementia. However, keep in mind that the findings reported are associations rather than showing cause — there may be other fac-
tors, such as overall diet, socioeconomic status, health status or something else, that influence both what we drink and our risk of stroke and dementia. Additionally, on May 1, 2017 Neurotrope announced topline results of a phase II clinical trial of the investigational therapy Bryostatin-1 in people with moderate to severe Alzheimer’s disease. They met their primary endpoint for safety, and there was a trend towards improvement in memory, thinking and behavior. More complete and detailed results are expected in about two months, and perhaps also at the Alzheimer’s Association International Conference (AAIC), July 16-20, 2017 in London, England. The company did not discuss specifics of next steps in testing this drug candidate. They said, “Once all of the data and analyses have been reviewed, the Company plans to meet with the [FDA] to address the clinical and regulatory path forward for Bryostatin-1.” Advances in research are what drive
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Lee Central Coast Newspapers / Alzheimers Awareness Guide / June 2017
the advocacy and public policy sides of the Alzheimer’s Association. With more awareness comes more funding that can push towards a cure and achieving our vision of a world without Alzheimer’s.
Living in the Moment Sue Watkins / Spouse and Caregiver
4 June 2017 / Alzheimers Awareness Guide / Lee Central Coast Newspapers
“This doesn’t make sense!” For the second month in a row, my highly intelligent husband couldn’t balance the checkbook. Lew worked in the finance industry for over fifty years, working his way up from a branch manager for Household Finance to the Executive Vice-President of a major auto finance company. Numbers were always his thing. For him to have trouble balancing the checkbook was unthinkable, but here it was. There had been other signs of memory issues, but how does one differentiate between normal aging and something more serious? Lew was in his early seventies when he started having occasional episodes of Transient Global Amnesia, a temporary loss of memory that passes in a few hours. After the first episode, Lew was tested for a stroke. Included in the numerous tests was a brain MRI. No stroke was diagnosed, but the MRI served as a baseline for later Alzheimer diagnostic tests. In retrospect, we realized that there were a number of signs and symptoms related to Alzheimer’s disease. Loss of interest in activities he once enjoyed were the more obvious ones, although we didn’t realize it at the time. He gradually stopped playing golf — three times a week and participation in team play slowly dropped to once a week and no team play. Regular participation in an online football pool with good friends and our son
eventually stopped altogether. After the problem occurred with the checkbook, our family physician referred him to a neurologist. Tests and analyses involved blood tests, memory and cognitive exercises, physical examination, and a brain MRI. The MRI, when compared to the previous imaging, showed a significant loss of brain matter. The memory and cognitive tests confirmed the diagnosis of early onset Alzheimer’s disease. Lew found the diagnosis to be a relief. Now he knew why these odd things had been happening to him. I, on the other hand, was devastated. I believed his life and our wonderful life together were over. I am an organizer and planner by nature. I quickly learned that Alzheimer’s is not something you can organize or plan. I felt so helpless. The one thing we could do is learn as much about the disease as possible. We attended workshops offered by the local Alzheimer’s Association: Help and Hope, Savvy Caregiver, and Confident Caregiver. Attendance at a local caregiver’s support group has been a lifesaver for me. We also participated in a writing workshop so we could tell our “Love Story.” We also learned to share the diagnosis with loved ones
I shop and cook for my mom every week.
I help my dad pay his bills
Am I a caregiver? I take my wife to the doctor
continued on page 11
If you are caring for a senior loved one, you are not alone. Lompoc is Here for You! Call now! In Lompoc, there are now more community resources than ever to assist the family caregiver with practical support as well as emotional support. You don’t need to wait until a crisis. In fact, seeking support as soon as possible after taking on the role of caregiving can help you cope with the challenges. The LVMC Family Caregiver Support Network is a brand new one stop shop providing FREE support and referral to resources.
Visit CaringTogetherLompoc.org or call The LVMC Family Caregiver Support Network 805.875.8875
Congress takes actions to fund Alzheimerâ€™s Research Leigh Cashman Ambassador to 24th District Congress member, Salud Carbajal Board Vice Chair, Central California Alzheimerâ€™s Association
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a letter of support in our funding quest for 2018. For years, Alzheimerâ€™s disease research funding has lagged behind the $2 billion funding per year necessary to be able to find an effective treatment for Alzheimerâ€™s disease by 2025. The people facing and fighting this disease now have new hope. This year the annual cost of caring for individuals living with Alzheimerâ€™s or other dementias will reach $259 billionâ€” these are direct costs to Medicare and Medicaid. These numbers are so large and very hard to imagine. For every $100 the U.S. government spends on Alzheimerâ€™s research, $16,000 was spent by Medicare and Medicaid to care for those living with the disease. Barring the development of medical breakthroughs to prevent or cure Alzheimerâ€™s, the number of Americans with the disease is set to triple over the next 35 years and the cost of care will increase to $1.1 trillion in 2050. We have to find preventative medications and a cure. These costs are staggering. Itâ€™s only through adequate funding and a strong implementation of the National Plan to Address Alzheimerâ€™s Disease, that we can meet our goals of effective treatment and prevention of Alzheimerâ€™s by 2025. We wonâ€™t stop until we get thereâ€”itâ€™s too important. Please join me in thanking Salud Carbajal for his commitment to fight to end Alzheimerâ€™s. We appreciate his support.
Lee Central Coast Newspapers / Alzheimers Awareness Guide / June 2017
have a very personal connection with Alzheimerâ€™s disease. My dad was formally diagnosed almost four years ago. My mother and I spent almost six years prior to that, trying to navigate through the illness, testing and care programs all to realize it was to no avail and he wouldnâ€™t get better! It was mentally and physically exhausting for us all. Once my father was diagnosed it was almost a relief. I know I canâ€™t help my father nowâ€” we lost him last Novemberâ€”but I can make a difference for our generation and those to come, by being an advocate and speaking up for the necessary funding dollars, proper care and treatment needed to fight this disease. I never thought I could make a difference but I was wrong. Every member of our Congress has a voice and a vote. It is very important to have these discussions with Congress and with those efforts, comes reward. We are moving closer to a cure. As one of the thousands of Alzheimerâ€™s advocates who went to Washington, D.C. and Sacramento this last spring, I am thrilled to say, our efforts are paying off. Congress is taking action. Just recently, a $400 million increase in Alzheimerâ€™s research funding was approved through the fiscal year 2017 budget, which is very exciting. This year we are asking for another $400 million increase for research funding and I am proud to say that our Congress member, Salud Carbajal, has signed
June is Alzheimer’s & Brain Awareness Month: Learn 10 Ways to Love Your Brain Mitchell Sloan / Vice President of Development & Communications, Alzheimer’s Association California Central Chapter
his June, during Alzheimer’s & Brain Awareness Month, join the Alzheimer’s Association® to help raise awareness of this devastating disease. You can start by learning and sharing the 10 Ways to Love your Brain. Research is still evolving, but evidence is strong that people can reduce their risk of cognitive decline by making key lifestyle changes. Based on this research, the Alzheimer’s Association offers 10 Ways to Love Your Brain, a collection of tips that can reduce the risk of cognitive decline. When possible, combine these habits to achieve maximum benefit for the brain and body: 1. Break a sweat: Engage in regular cardiovascular exercise that elevates your heart rate and increases blood flow to the brain and body. Several studies have found an association between
physical activity and reduced risk of cognitive decline. 2. Hit the books: Formal education in any stage of life will help reduce your risk of cognitive decline and dementia. For example, take a class at a local college, community center or online. 3. Butt out: Evidence shows that smoking increases risk of cognitive decline. Quitting smoking can reduce that risk to levels comparable to those who have not smoked. 4. Follow your heart: Evidence shows that risk factors for cardiovascular disease and stroke — obesity, high blood pressure and diabetes — negatively impact your cognitive health. Take care of your heart, and your brain just might follow. 5. Heads up: Brain injury can raise risk of cognitive decline and dementia. Wear a seat belt, use a helmet when
playing contact sports or riding a bike, and take steps to prevent falls. 6. Fuel up right: Eat a healthy and balanced diet that is lower in fat and higher in vegetables and fruit to help reduce the risk of cognitive decline. Although research on diet and cognitive function is limited, certain diets, including Mediterranean and Mediterranean-DASH (Dietary Approaches to Stop Hypertension), may contribute to risk reduction. 7. Catch some Zzz’s: Not getting enough sleep due to conditions like insomnia or sleep apnea may result in problems with memory and thinking. 8. Take care of your mental health: Some studies link a history of depression with increased risk of cognitive decline, so seek medical treatment if you have symptoms of depression, anxiety or other mental health concerns. Also, try to manage stress.
9. Stump yourself: Challenge and activate your mind. Build a piece of furniture. Complete a jigsaw puzzle. Do something artistic. Play games, such as bridge, that make you think strategically. Challenging your mind may have short and long-term benefits for your brain. 10. Buddy up: Staying socially engaged may support brain health. Pursue social activities that are meaningful to you. Find ways to be part of your local community – if you love animals, consider volunteering at a local shelter. If you enjoy singing, join a local choir or help at an afterschool program. Or, just share activities with friends and family. It’s never too late or too early to start thinking about your brain’s health — making healthy choices at any age is beneficial. Visit alz.org/10ways to learn more.
6 June 2017 / Alzheimers Awareness Guide / Lee Central Coast Newspapers
10 WAYS TO LOVE YOUR BRAIN START NOW. It’s never too late or too early to incorporate healthy habits.
HIT THE BOOKS
Our Specialty Programs Palliative Care Parkinson’s Wellness The CHF Program Better Balance for Life® Total Joint Program Lymphedema Therapy
there is HOPE in HOSPICE
Formal education will help reduce risk of cognitive BREAK decline and dementia. A SWEAT Take a class at a local Engage in regular college, community cardiovascular exercise center or online. that elevates heart rate and increases blood flow. Studies have found that physical activity reduces risk of cognitive decline.
Private Consultation No Delay in Start of Care Call us for more info
indicates that people can
Challenge your mind. Build a piece of furniture. Play games of strategy, like bridge.
Locally Owned and Operated Medical Staff Available 24/7
Smoking increases risk of cognitive decline. Quitting FOLLOW smoking can reduce risk to levels comparable YOUR HEART to those who have Risk factors for not smoked. cardiovascular disease and stroke – obesity, high blood pressure and diabetes – negatively impact your cognitive health.
reduce their risk of cognitive decline by adopting key lifestyle habits. When possible, combine these habits to achieve
Brain injury can raise risk of cognitive decline and dementia. Wear a seat belt and use a helmet when playing contact sports or riding a bike.
maximum benefit for the
brain and body.
Staying socially engaged may support brain health. Find ways to be part of your local community or share activities with friends and family.
TAKE CARE OF YOUR MENTAL HEALTH
Some studies link depression with cognitive decline, so seek treatment if you have depression, anxiety or stress.
CATCH SOME ZZZ’S
FUEL UP RIGHT
Eat a balanced diet that is higher in vegetables and fruit to help reduce the risk of cognitive decline.
Not getting enough sleep may result in problems with memory and thinking.
Visit alz.org/10ways to learn more.
Community and Counseling Essentials for Family Caregivers
here’s a job that nearly 1 in 6 people are doing in Lompoc, with more and more starting each day. The work is unpaid, it can be lonely, and there’s typically no training. It generally gets more complex, and more demanding either gradually or suddenly without warning, and there are no days off. What’s the job? The family caregiver. Family caregivers in Lompoc typically help a senior spouse or parent with paying bills, transportation, shopping, cooking, laundry, or other household chores (often on top of a full- or parttime job, as well as handling these tasks for their own household). The result? Family caregivers’ lives are so full of doing for others that they are at risk of becoming the proverbial driver who’s too busy to stop and get gas. Family caregivers know they are
Juliana Minsk essential to maintaining and improving the lives of their loved ones. That knowledge keeps them going even on the days they might wish they could quit. And yet, over time and without help, even the most dedicated family caregiver can feel overwhelmed by stress and isolation. But here in Lompoc, Caring Together Lompoc is a community effort letting you know you are not alone — and that you don’t have to wait another day to start finding support. The new LVMC Family Caregiver Support Network is here to help make sure you find the right support and resources for your own unique situation. There are now more community resources than ever to assist the family caregiver with practical support as well as emotional support. Oftentimes
family caregivers will wait until their emotional gas tank is running on empty, a real crisis, before seeking help. Even though the last thing most family caregivers want is to add more to their to-do list, experts suggest joining a support group or seeking one-on-one counseling to keep their “emotional gas tank” full as soon as possible after taking on the role of caregiving. Joining in a community of people who understand, before a crisis, is a way to help prevent “caregiver fatigue syndrome” and other common challenges. For example, here in Lompoc, Family Service Agency offers family caregivers free and confidential support groups and one-on-one counseling, and Valley Haven offers an Alzheimer’s Support Group, sponsored by the Alzheimer’s Association.
Participants share that it really helps to be together with other people who can relate, hearing their stories and how they are managing, and even being able to laugh at times about the toughest of situations. If you or someone you know is experiencing a new or long-time caregiving role, don’t wait to find the support you need. The LVMC Family Caregiver Support Network is a free hub for government, public and community service resources. For walk-in hours or to make an appointment, call (805) 875-8875 or visit www.lompocvmc.com/patients/ familycaregiversupportnetwork. And for more info about caregivers in Lompoc, visit the Caring Together Lompoc website at www. caringtogetherlompoc.org.
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Lee Central Coast Newspapers / Alzheimers Awareness Guide / June 2017
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Thou Shalt not Argue Carolyn Beasley
8 June 2017 / Alzheimers Awareness Guide / Lee Central Coast Newspapers
he first golden rule for people caring for people affected with dementia is “Do Not Argue.” This is especially important in the later stages of dementia. From my experience, if your loved one thinks her husband is still alive, that is her reality. Arguing with her will encourage frustration, confusion, fear, anger and a difficult time for both of you. This is not about “being correct.” This is about helping a person with a serious disability. However counterproductive arguing with a person with dementia is, whatever distressing effects it creates over and over, not arguing is one of the most difficult lessons a caregiver will have to learn. That’s because the human brain is hard-wired to want to be right. Our brains associate being right with a feeling of satisfaction and well-being. Winning an argument and proving oneself right feels good. It makes one feel self-assured, respected and confident. On the other hand, losing an argument and being proved wrong is often associated with feelings of being demoralized, disrespected, ridiculed and challenged. These are all negative feelings.
Wanting to prove our point is human nature. All through our lives, we have worked on improving our communication skills so we can get our point across. We love to be right. We love being on the side of those who are right. We associate being right with being successful. Now, when caring for someone with dementia, we are suddenly asked to do the exact opposite. Do not try to reason! Do not confront! Do not point out they are wrong! Do not argue! Being right may lead you to failure. This is because patients with advancing dementia experience a decline in their reasoning skills at the same time that they experience an increase in emotional responses. Facts, dates, causes, consequences and logic become increasingly less important. Feelings, however, grow in importance and intensity. The golden rule exists to enhance wellness, not rightness. Promoting pleasant feelings, even when based on a false-hood, will generate a feeling of well-being. Making your loved one feel wrong, even when you are so obviously right, will make him feel bad, defensive and angry, and he will be more likely to dig in his heels and try to do it his own
way. His dementia will make you the enemy. The skilled caregiver has learned how to put on hold his own need to be right, has learned to use strategy and finesse when handling a difficult situation, and knows when to refocus and redirect, avoiding confrontation. Most of all, the skilled caregiver has learned not to take it personally—which is equally important if you are going to protect yourself from developing your own negative feelings about “being wrong” all the time! Tragically, family caregivers are under a tremendous amount of relentless stress, and the more stressed you are, the less able you became to control your own negative feelings. The 1936 Dale Carnegie’s classic How to Win Friends and Influence People brings a powerful message that is still relevant today. Carnegie proposes six ways to make people like you: 1. Become genuinely interested in other people. 2. Smile. 3. Remember that a person’s name is to that person the sweetest and most important sound in any language. 4. Be a good listener. Encourage others to talk about themselves.
5. Talk in terms of the other person’s interests. Make the other person feel important—and do it sincerely. Carnegie’s timeless philosophy revolves entirely around putting your own feelings and self-interests aside and focusing on the other person. His suggestions are particularly useful when applied to caring for a loved one with dementia. At the end of the day, it is your approach that will set the tone for their feelings of well-being. But if you get caught in the trap of feeling bad for not having your points validated, try to remember: How important is it in the grand scheme of things? Is it really worth getting upset about it? Is it worth ruining the rest of your day over it? Joining a support group can be extremely helpful in reducing caregiver stress and developing healthy communications skills and strategies. Your local Alzheimer’s Association offers support groups and other resources to assist you in caregiving for your loved one. And when caring for a loved one with dementia, the best time to call for help is always before you need it
Navigating Caregiving Ride to Remember Gary Gross
A TIME OUT FOR Alzheimer’s Disease CAREGIVERS 2016 Facts and Figures Our Life Enrichment Day Program for the elderly and those who care for them
ALZHEIMER’S DISEASE IS THE
Our program is designedAMERICANS to help enrich the lives of ARE LIVING WITH ALZHEIMER’S theINelderly while THE UNITED STATES offering caregivers a respite from the 1 INof3daily SENIORS demanding responsibilities caregiving.
DIES WITH ALZHEIMER’S OR ANOTHER DEMENTIA
Be it only for a few hours or a day, just give us a call. Every caregiver could use a little and our 18.1break BILLION HOURS OF program is here for you. IN 2015, MORE THAN 15 MILLION CAREGIVERS PROVIDED AN ESTIMATED
All our elderly care services and amenities are included ALZHEIMER’S COSTS CAREGIVERS THAN THEIR TIME in this MORE program. EVERY FAMILY CAREGIVERS SPEND MORE THAN
A YEAR •$5,000 TRANSPORTATION TO/FROM CARING FOR SOMEONE WITH ALZHEIMER’S FRIENDSHIP HOUSE IN 2016, ALZHEIMER’S AND OTHER SOMEONE IN THE UNITED STATES DEVELOPS THE DISEASE
Lake Side Terrace picnic area. The walk is from 9 to 11 a.m., with registration begins at 8 a.m. For the past two years we have added a 5K run as well. Last year, we had our 1st annual Motorcycle “Ride 2 Remember.” The ride started at 11 a.m. from Waller Park to Ragged Point. At Ragged Point we had food and entertainment. This year, we are planning the second annual “CC Ride 2 Remember,” which will start at Waller Park, open to all motorcycles. This year it will be a poker run with BBQ following. Recommended donations start at $30 for individuals and $40 for couples. Please call or email Gary Gross for more information at 805.260.5180 or CCRide2Remember@ yahoo.com.
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Lee Central Coast Newspapers / Alzheimers Awareness Guide / June 2017
have been the Walk Manager for the Santa Maria Walk to End Alzheimer’s for the past ten years. Our walks have raised over a half a million dollars locally. The money raised benefit families and their loved ones affected by Alzheimer’s disease. The Alzheimer’s Association offers outreach, support groups for families and loved ones, private care consultations, respite care grants and caregiver classes. I also facilitate a support group for family members caring for a loved one with Alzheimer’s disease on the 3rd Tuesday of every month. The group meets at Merrill Gardens between 10:30 am and noon. The Santa Maria Walk to End Alzheimer’s takes place at Waller Park’s
What makes your loved one great? Donna Beal, MPH, MCHES
10 June 2017 / Alzheimers Awareness Guide / Lee Central Coast Newspapers
oon after my Aunt Jean was diagnosed with vascular dementia she became angry and listless. The spark went out from her eyes. I knew she was depressed— understandably so, but I had a hard time reaching her. I made arrangements for all of her care, and made sure that everything was covered. Our family tried to keep her active with outings and family dinners, but she would focus on getting her driver’s license back, start family arguments or get angry over small things. My aunt had been a physical education teacher, world traveler and a
role model for me. She loved teaching and was good at it. After she retired from teaching, she traveled in her motor home and flew all over the world. She was active and lively. She went to China for six weeks when she was 80. As my aunt’s dementia progressed it got harder and harder to care for her. My heart was broken. Here was a woman who controlled her destiny, prevailed in the face of overwhelming obstacles yet this one thing seemed to be a mountain she could not climb. Our family’s experience is not unusual. When caring for someone
EMPOWERING THE CAREGIVER RESOURCE FAIR SOLVANG SANTA MARIA Saturday, June 24, 2017 10 a.m. to 12 p.m.
Solvang Friendship House 880 Friendship Lane, Solvang
Saturday, November 18, 2017 2 p.m. - 5 p.m. Elwin Mussel Senior Center 510 Park Ave, Santa Maria
Join us for a free resource fair specializing in caregiving for someone with dementia or Alzheimer’s! Space is limited. Solvang: RSVP by June 17 at 805.892.4259 x111 | email@example.com Santa Maria: RSVP by Nov. 11 at 805.636.6432 | firstname.lastname@example.org
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with dementia it is easy to get so wrapped up in schedules, medications and personal care that we forget what it was that made that person happy. That is, who they were, and how they liked to spend their time. Eventually, we learned about person-centered care which is exactly the opposite. Instead of efficiency, the focus is on flexibility with the goal being to meet the needs of the person in a manner that is best for them. Making the focus of the care the person, their values, beliefs and preferences—person-centered care— builds on the strengths and abilities of the person with dementia. What is person-centered care? Person-centered care is a way of thinking and doing things that makes your loved one an equal partner in planning, developing and monitoring care to make sure it meets their needs. It puts them at the center of their care, honoring their values, choices and preferences, rather than focusing on their current level of ability, or abilities they have lost. Person-centered care is not just about giving people whatever they want or providing information. It is compassionate care that considers a person’s desires, values, and lifestyle. One sees the person as an individual, and works together with them to develop the best solution. This might be done through sharing decisions with the person with dementia and helping them manage their health, when to go to bed, or how to spend an afternoon—but person-centered care is not just about activities. It is as much about the way you and your loved one think about care and your relationship as the actual care that is provided. It is grounded in mutually beneficial partnerships established between people with dementia and their caregivers. Person-centered care reduces the
amount of time spent in the doctor’s office as well. Studies have found that people with Alzheimer’s who received person-centered care needed fewer doctors’ visits and were referred less for tests. This is attributed to a sense of greater connectedness that the person with Alzheimer’s has with their environment and the people in it. In essence, things aren’t quite so confusing because the person with Alzheimer’s is working with someone with whom they are familiar (Stewart, et al., 2000). There are many different ways to take care of the person with dementia in a person-centered effort: • Discuss and identify the person’s values and focus on those values in their daily routines. • Consider the person’s preferences and needs. • Work together to ensure there is good communication, information and education for both the person with Alzheimer’s and their caregiver. • Make sure the person with Alzheimer’s is physically comfortable and safe. • Provide emotional support. • Involve friends, family and the community. • Make sure the person has appropriate care when they need it. Our family soon applied these tools and starting talking about trips we had taken together, sharing stories of our aunt’s adventures and inviting her to teach the next generation of our family some basketball skills. Soon the light came back to Aunt Jean’s eyes and a smile frequented her lips. „± Stewart, M., Brown, J.B., Donnor, A., McWhinney, I.R., Oates, J., Weston, W.W., & Jordan, J. (2000). The impact of patient-centered care on outcomes. The Journal of Family Practice, 49(9); https://www.researchgate. net/profile/Wayne_Weston/publication/12292586_ The_impact_of_patient-centered_care_on_outcomes/ links/004635260327e8a432000000.pdf
Navigating Caregiving diagnosis, we still play cribbage every day and bridge often. Lew might not remember the day of the week, but and friends. The more open we were about Lew having he can still play a great game of cards. the disease, the more understanding and support we We still play golf, but I have a better chance of beating received. We were making plans to drop out a number of him now. He prefers playing with me alone or with other social activities. Fortunately our friends wouldn’t hear couples. of it. As they explained, we are all getting older and will We get to see our son, daughter-in-law, and grandhave physical and mental problems. sons often and they provide love and support. Our son An “aha” moment was when we realized that life was recently spent an afternoon videotaping a conversation not over. We have been married for over forty years with his dad about his past, his favorite things, his most and love to travel. When we first received the diagnosis memorable experiences, and life in general, as a record of Alzheimer’s disease, we thought traveling was over for their children. I am still working on our “Love Story.” and how fortunate we had been to experience the joys I have finished “Lew’s Story” and have started “Our afforded through all the countries we had visited and Story.” We have had such a wonderful life together and the friends we had made. A couple of months prior to we want to share it. the diagnosis, we took a cruise to Canada and Alaska. Two years post-diagnosis, Lew’s disease has proWithin a very short time, Lew didn’t remember anygressed to the point that he can’t drive anymore. His thing about it. response was to send out an email to friends and family That first year following the diagnosis was spent announcing he’s taking applications for chauffeurs. learning everything we could about the disease, treatLew has a wonderful sense of humor and is pragmatic ment options, support, and outcomes. The second year we started living our lives again. One day I looked at Lew by nature. He has never denied having the disease and is the first one to acknowledge that losing track of strokes and realized that it isn’t about what he remembers, or on the golf course is due to his Alzheimer’s. doesn’t — life is really about living in the moment. One late afternoon we were sitting on the bank of the During the second year we took numerous short golf Rogue River with our friends when Lew turned to me trips with friends, a nineteen-day cruise through the and said, “We are having the best time. I’m sorry I won’t Panama Canal with close friends, and two road trips. When we were dating we discovered we both loved to be able to remember it.” We raised our glasses, and Sue and Lew Watkins play cribbage. We also enjoy bridge. Two years posttoasted to “Living in the Moment.” continued from page 4
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Unforgettable Living with Alzheimer’s
With Alzheimer’s disease or dementia, it is not just those with the disease who are impacted, it is also their family caregivers. As dementia progresses, it is the daily activities (such as eating, getting dressed, and bathing) that patients often need help with the most. Caring for a person with Alzheimer’s disease can be rewarding, yet very challenging. Family members might feel exhausted, overwhelmed, or stressed. As the physical and emotional challenges of caregiving increase, caregivers often need outside help. Fortunately, help is available through PERSONAL CARE SERVICES by Visiting Nurse & Hospice Care. We offer skilled nursing care, both short and long-term. Our caregivers and homemakers can assist with everyday tasks. Our services are available 24/7, including weekends and holidays, and if a family caregiver needs time off, we offer Respite Care. Our caregivers are screened, insured, trained and supervised.
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