Oct 302014
 

In April 2013, Vern Gillmore was diagnosed with early-stage Alzheimer’s disease. When Vern first started to experience the warning signs, he was not prepared to hear the words “Alzheimer’s disease.” Today Vern and his wife and care partner Karen are working together to educate others about the disease while facing their daily challenges head-on. They are just one couple whose story shows the power of love and teamwork during National Alzheimer’s Disease Awareness Month.vk1

In Vern’s Words

I have been athletic all my life. I couldn’t accept not having a healthy body. I’ve always prided myself on physical fitness and staying in good health, and suddenly I had anxiety and double vision and difficulty using familiar devices like the home computer.

I was a volunteer in disaster response, and when you work in those situations, you have to be able to make quick decisions. I volunteered during Hurricane Sandy in New York and realized when I returned home that I wasn’t as quick or alert as I should have been. I didn’t want to hurt people who were suffering by making a bad decision – that would have torn my heart out. I realized something was wrong with me. My mother and brother had Alzheimer’s, but I was in denial that the cause of my symptoms could be the same.

I have accepted that I have Alzheimer’s. I handle my frustrations by keeping busy. I love taking my dog outside, running her hard for an hour and see her enjoy the exercise as much as I do. Her happy wagging tail makes me happy.

At first I didn’t want to share my diagnosis with others.  I was embarrassed and ashamed. But then I realized that I didn’t do anything wrong to cause this diagnosis. Things have changed since my diagnosis. I now look forward to being able to talk openly about my Alzheimer’s. I now speak at churches, city centers and hospitals in my area because I know that many people are uninformed and that the general population needs to understand and learn more about Alzheimer’s disease.

My wife Karen is my care partner. She is observant and sharp. She doesn’t miss a beat.  She is why I was able to get back to what matters: I volunteer, participate in the Walk to End Alzheimer’s, and stay involved in whatever capacity I can.

In Karen’s Words

Vern and I met through a newspaper advertisement in the San Francisco Chronicle during the ’90s. We were married for 20 years before the Alzheimer’s diagnosis.

I am the worrier in the family, vigilant 24/7. On a typical day, I manage our schedules and instill safe habits. Vern sets up his medications and I double-check them. I ask him the important questions before he goes out: do you have your wallet? Keys? Phone? GPS? We keep a list of phone numbers available should he become confused or need help when he goes out.

I have found the Alzheimer’s Association website alz.org to be a gold mine. It is simple – there is so much information on Alzheimer’s disease and it’s easy to read and understand. I chip away at the website, read books, and subscribe to neurology journals.

I think it is important for care partners and caregivers to know that it doesn’t make you a bad person when you experience frustrations. One of the biggest challenges I have come across is the changed communication style between Vern and I. It takes a lot of energy and never-ending patience to not take things he says or does personally.

When we went to a support group, it was the first time I didn’t feel all alone anymore. Everything I had been thinking and feeling was validated. Other people were experiencing the same emotions I was. I talked to people who were at the same place I was as a care partner and it gave me a renewed sense of energy.

Vern has renewed energy as well; he is now very interested in educating people about the disease as an Alzheimer’s Association National Early-Stage Advisor. He never really had a hobby other than running, and volunteering; but he has one now. His hobby remains volunteering, but he has added talking about Alzheimer’s and educating the public about how this disease impacts individuals and families.vk2

Vern and Karen’s story continues. And they are not alone.

In 2013, 15.5 million family and friends provided 17.7 billion hours of unpaid care to those with Alzheimer’s and other dementias – care valued at $220.2 billion. More than 60 percent of those Alzheimer’s and dementia caregivers and care partners are women. Karen is just one of millions who found resources that have helped her on her journey as a care partner.

Vern Gillmore is a member of the Alzheimer’s Association 2014 National Early-Stage Advisory Group (ESAG) and is actively involved with the Utah Chapter of the Alzheimer’s Association. As an Advisor, Vern shares his story to raise awareness about Alzheimer’s and help reduce the stigma attached to the disease.

 

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Feb 212014
 
wanda_young

Volunteers – both with and without Alzheimer’s disease – are needed to participate in actively enrolling clinical trials about Alzheimer’s and related dementias. Recruiting and retaining trial participants is one of the greatest obstacles to developing the next generation of  treatments and possibly future cures for Alzheimer’s and other dementias.

TrialMatch® is a free matching service that connects individuals with Alzheimer’s and other dementias, caregivers, healthy volunteers and physicians with current clinical studies. With a database of 130+ Alzheimer’s clinical trials, including both pharmacological (drug) and non-pharmacological (non-drug) studies being conducted across the country, TrialMatch is a unique opportunity to make a difference in your life and the life of others with Alzheimer’s disease.

The Alzheimer’s Association spoke with TrialMatch user Wanda Young regarding the benefits of her participation in these clinical studies. Wanda is caregiver for her husband, mother and brother, all of which have forms of dementia.  She is participating in clinical trials as a healthy volunteer.

Wanda initially called the Alzheimer’s Association to receive information about brain donation and was told about TrialMatch. “I Cwas interested in the opportunity because I wanted to learn; I’m always trying to learn more. I’m actually taking a psychology course right now, studying the brain. My kids think I’m a bit of a geek, always trying to absorb the most I can about a subject… Education is the key to everything.”

“TrialMatch allowed me to plan my days as a caregiver better. It helped me take a look at myself and how I was coping, and how I could better care for my loved ones. TrialMatch prepared me for what to expect and how to respond as my family members progress with their various dementias. The TrialMatch experiences allow me to think further beyond today and into the future.”

Wanda says that she saw the TrialMatch process not only as an outlet, but as a helpful planning tool that allowed her to plan major life decisions. “My time at the computer is my time alone and my time away from everything else I am experiencing. Using the computer on my own schedule is an easy way to receive new information. The studies I participated in helped me write my advance directive and allowed me to look at my own life and health. I also received tips for managing the medications of my family members, as well as helpful information about daily toiletry, tactful ways to redirect, travel to doctor appointments and so many helpful resources for each of them (my husband, mother and now my brother.) These are not easy tasks. They take time to complete, and only someone in my situation knows what it is like.”

Whether you are a caregiver, someone with Alzheimer’s or other form of dementia, or even a loved one of a caregiver or person with dementia, you are needed for future research. “I wish more physicians knew about TrialMatch and could tell their patients and their families about it. I used to have my own business; needless to say, my life is very different from what it used to be. Caregiving takes a major hit on your self-esteem. As a caregiver, I have gained a lot of weight due to the stressors in my life.  Without a support group or outside help, you can begin to feel like a non-entity, like you don’t exist. Thankfully I have been able to join a support group and have participated in groups at the Alzheimer’s Association to help with these feelings.”

Wanda recognizes that the more that she learns, the more she can change her life and the lives of others. TrialMatch educates caregivers and offers researchers valuable information only caregivers and those with Alzheimer’s  and other dementias can provide. “I believe I have become an advocate,” Wanda says. “I read, I experience, I learn, and I take what I know back to the nursing home to help those in need. I share what I have learned with the staff, other caregivers, the residents and their family members. You don’t feel so far-removed from researchers when you are able to participate in a trial. I felt as though someone heard me, and that in itself is empowering. TrialMatch has been a way to de-stress. Being a caregiver is a full-time job. People don’t realize how difficult it is. It is important that caregivers have a voice.  I thank TrialMatch for giving me this platform.”

Ultimately, the goal is always the same. “The TrialMatch studies help caregivers cope with the difficult task of taking care of our loved ones. You feel less alone, and more educated. You feel like someone cares – and understands. Ultimately, the reason anyone should participate is to get us closer to a cure. The goal is always to find a cure.”

 

Wanda Young has been married to her husband Lou, a former teacher, mentor and coach for nearly 30 years. They have two wonderful sons. Wanda participated in the Medications Assistance study and the Relationship between Chronic Stressors and Eating Behaviors in Dementia Family Caregivers study through the Alzheimer’s Association’s TrialMatch® program. She is the primary caregiver for her husband, her mother and her brother.FOTFE12_A

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Feb 142014
 

Dr_Monica-ParkerDuring Black History Month, the Alzheimer’s Association spoke with Dr. Monica Parker, an African-American family physician, caregiver and assistant professor of medicine about her passion for providing communities with local resources. The theme throughout all of her research and work in the field is simple: Education.

Board certified since 1990, Dr. Parker has practiced primary care and geriatric medicine in rural Georgia and urban Atlanta. Since 1995, she has been practicing with Emory Healthcare, often speaking on the importance of Alzheimer’s education. Dr. Parker has witnessed firsthand what needs to be done to get black communities involved in research through clinical trials.

“We need to educate and better equip our primary care providers,” states Dr. Parker. “If more providers are provided the tools to properly screen geriatric patients for dementia and given knowledge of community resources for their families, we will have better outcomes for the public. We need to better understand healthy aging overall.”

Dr. Parker stresses that education is key. She noticed that most of her upper-middle class white patients were being screened every year as part of a clinical research study at Emory’s Wesley Woods Center, and learning about better lifestyle habits. She knew that these same habits needed to be created and maintained in black communities.

“We needed – and need – to implore more people of color to become involved in clinical trials. We need them to complete memory assessments. Thankfully more and more people in the community have access to these opportunities. It is great to observe the excitement they have in becoming involved.”

Many people in the community were not involved in studies simply because they were not asked. “African-Americans are not unwilling. People were not aware of the need for study volunteers. In fact, African-Americans are very concerned with making things better for the next generation. They don’t want their children to face the same hurdles.”

African-Americans have a higher rate of vascular disease and are two times more likely to develop Alzheimer’s than whites, so the time to get involved is now. “The biggest issue is poorly-controlled vascular disease,” Dr. Parker says. “We know that there is a gene that creates a predisposition to Alzheimer’s. MRI’s can show brain infarcts, which are caused by poor brain blood flow. Hypertension, diabetes and hypercholesterolemia are risk factors for decreasing brain circulation commonly manifested as strokes, or TIA’s. Education keeps people aware of these risk factors and lets them know where to turn and what questions to ask.”

The call to action must be verbalized and disseminated throughout communities. “Churches are the first place people in the community go to seek help and comfort. Church may not be prepared to take on questions about Alzheimer’s and to provide the necessary support. Many smaller congregations have no formal adult daycare program. Pastors want to help identify people in the community that need assistance. They are now able to develop relationships with health providers and offices of Aging. Congregations have hosted forums to let people know what dementia is – and what it is not. In these programs, the average person learns where to obtain information to help cope.”

Since 2010, Dr. Parker and her team have developed community forums, funded  in part and supported  by the Alzheimer’s Association, to inform about the Emory Alzheimer’s Disease Research Center and ongoing clinical studies. These studies have included an African-American Caregiver study, a study about normal women’s aging, and a cerebrospinal fluid (CSF) biomarker study comparing CSF of Caucasians and African Americans with family histories of Alzheimer’s disease. Dr. Parker and the Emory Alzheimer’s Disease Research Center (ADRC) have established these educational forums as one strategy that serves as an excellent mechanism for recruitment of volunteers for clinical studies.

According to Dr. Parker, many of the participants in the COOL-AD African-American Caregiver Education study in the Emory School of Nursing study viewed their participation as an opportunity for getting assistance and as a “service” provided by Emory – not simply as research.

One of the biggest and most immediate concerns still surrounding African-American research is the establishment of a national brain registry.  The Emory Alzheimer’s Disease Research Center has had four African American families donate the brains of loved ones for the study of Alzheimer’s Disease in the last two years. These persons were active research participants before their deaths. This provided an opportunity to learn about their disease trajectory. The brain autopsy is important because the dementia observed may have a different pathologic origin in this population. Dr. Parker has a passion for this work, but she also knows that the decision to donate the brain of a parent or loved one is a difficult decision. Whether a person chooses to donate their brain for research or not, the more information provided to communities about the long-term value of these studies will result in more trials, further research and a possible cure that will secure the health of future generations.

Monica W. Parker, M.D., is an Assistant Professor of Medicine in the Division of Geriatrics and Gerontology at Emory University. Dr. Parker participates in a biyearly lecture series funded by the Georgia chapter of the Alzheimer’s Association. Dr. Parker received a National Institute of Health (NIH) Minority Supplement award to study dementia in ethnic persons in the Emory Alzheimer’s Disease Research Center (ADRC). She also takes her lectures on the road through the Registry for Remembrance, an academic community partnership that helps educate and recruit African-Americans for long term research participation at the ADRC. She is currently a Co-PI on a 3.5 million dollar grant awarded to Emory School of Nursing by the NIH – National Institute of Nursing Research (NINR).

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