May 052014
 

In a record year for the Alzheimer’s Association Advocacy Forum, nearly 900 advocates gathered on Capitol Hill, compelling Congress to make Alzheimer’s disease a national priority. With representatives present from all 50 states, this event once again brought together those affected by Alzheimer’s and allowed them to share their stories, their passion and their personal challenges living with the disease. Chuck Warner was one of the 900 strong.

From April 7-9, my wife Lisa and I had the opportunity to attend the 2014 Alzheimer’s Association Advocacy Forum in Washington, D.C. This was my first experience as a Forum attendee. I was looking forward to meeting other advocates living with the disease and the opportunity to connect with my peers from the Alzheimer’s Association National Early-Stage Advisory Group.

National Early-Stage Advisors represent individuals living with Alzheimer’s and related dementias and use their voice to educate state and federal officials about the need for improved research funding, care and support programs to support individuals and families affected by Alzheimer’s disease. In this role, advisors advocated for people with Alzheimer’s so that they may receive expedited access to Social Security Disability Insurance (SSDI) and Supplemental Security Income (SSI) through the Compassionate Allowance Initiative. They also advocated for the inclusion of an individual living with dementia to serve on the Advisory Council on Alzheimer’s Research, Care, and Services to the National Plan to Address Alzheimer’s Disease.

My experience at the Forum was even more impactful than I could have imagined. This year, a record-breaking 40 individuals living with Alzheimer’s or related dementias registered to attend the Advocacy Forum. Twenty of those individuals were either current or former National Early-Stage Advisors. These numbers represent the largest contingency of individuals living with dementia in the 26-year history of Forum.warner_hill

It was a pleasure meeting fellow advocates living with the disease and I was overcome by the emotional bonding that occurred among this group. The opportunity to spend time with other individuals using their voice and sharing their stories to raise awareness of the unique needs of individuals and families living with Alzheimer’s disease was a powerful experience.

Along with staff from our local Association chapter and other advocates from California, we brought our message to Capitol Hill where we met with Congressman Sam Farr. I have known Congressman Farr for many decades and enjoyed our conversation. Our message – that Alzheimer’s is the most expensive disease in America, with costs set to skyrocket in the years ahead – was heard. But there is more work to be done. The number of Americans with Alzheimer’s disease is growing and at some point the federal government will have to face the financial and economic impact of Alzheimer’s disease on this country.

My experience in Washington, D.C. heightened my resolve to educate others about Alzheimer’s disease and the growing crisis which stands before us. As an advocate, I think it is time for policymakers to get on board and pledge to support the fight to end Alzheimer’s.

Since my return home – and recovery from jet lag – I feel more determined than ever to raise awareness about Alzheimer’s and the consequences for others like me living with the disease, our families and the millions of others who will eventually be impacted. The Forum inspired me to try and do something each day to politely educate those who do not know (or perhaps do not want to know) about Alzheimer’s and the consequences of this disease.

You can join the cause by becoming one of the thousands of Alzheimer’s advocates who are making a difference. At the Alzheimer’s Association, we are working toward a time when we will have effective treatments, preventive strategies and gold-standard care for all people affected by Alzheimer’s disease. To learn more about how you can become an integral part of this movement, visit the Advocacy homepage to become an advocate today.

About the Author: Chuck Warner is a member of the Alzheimer’s Association 2013 National Early-Stage Advisory Group (ESAG). He encourages others living with the disease to be actively involved in planning for their future and engage in a fulfilling life. “An Alzheimer’s diagnosis feels like the end of the world, but it’s not – you can make a difference.”

 

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Apr 212014
 

The greatest enemy of any one of our truths may be the rest of our truths. ~William James

My father doesn’t know that my sister, Alice, is dead. He doesn’t know that she had cancer, that she suffered, or that she, in a pain-pills-slur, asked to be buried in a red dress with no shoes.

My father doesn’t know that I am his daughter, Elizabeth Emily, the girl he nicknamed “E.E.” for brevity and affection. He thinks I’m my other sister, Valerie, because in his mind I am still twenty years old, not thirty. I am fifty pounds lighter, with a ponytail and headphones. In his mind, I have never changed his diaper.

My father doesn’t know he has Alzheimer’s disease. He thinks it is 1964 and that he has just signed up for another tour in Vietnam. He’s leaving tomorrow, so can we please stop worrying and press his uniform?

Some days, my father is not a man who needs Medicaid to share a nursing home room that barely fits three beds. He believes he is a California millalzheimers_association_pionaire with so many servants and staff members he can’t keep track of them.

There was a time I felt a naïve ethical duty to correct him.

You see, my father never lied to me. Not about Santa Claus or floating goldfish. Growing up, if I got caught in a fib, he’d gently warn: “Our Heavenly Father hates a liar.” I knew from his steady example that my earthly father did, too.

So, when the most honest person I’d ever met started losing his grip on the truth I panicked.

I remember the first time his reality didn’t match mine. He looked up from his hospital bed and asked, “Where’s Tippi?” I froze. I couldn’t remind him that he’d asked the vet to put his dog down three years ago. I couldn’t lie, not to him, but I knew the truth would be painful, confusing, and cruel. Luckily, my husband piped up, “Tippi’s in Texas.” Technically, this was true.

Several times I tried to tell my father the “real” truth about things he’d say. “We sold the house in Tennessee ten years ago, remember?” I quickly found myself unintentionally hurting him.

I needed help learning how to give him back the very thing my “truth” and his Alzheimer’s disease were taking—his dignity. In the worst moments of seeing him succumb to the disease, I prayed. My prayers were answered by a few heroic nurses who showed me the tools for maintaining dignity: patience, creativity, consideration, and love.

The first nurse, an unlikely baritone, harmonized “Que Sera, Sera” with my dad when he started belting out the song at 2 a.m. The nurse could have demanded that my dad quiet down, or worse, he could have medicated him. Instead, he sang a few choruses like they really were listening to old records, and his reassuring voice lulled my dad to sleep.

Another aide with a soft pink sweater taught me that sometimes a shrug, a warm smile, and a Hershey’s Kiss provide more reassurance than anything we could say.

The best nurses taught me that when a loved one’s mind deteriorates, you must talk to his or her heart. Though they taught me, they never told me. Their actions spoke to my heart and changed it as I witnessed the kindnesses they shared with all the residents.

I remember watching a favorite nurse ask one reluctant woman if she was ready to come downstairs for brunch. This puzzled me because the nursing home stood one-story high and it was 5 p.m. But it made sense to the woman. I later found out why she grinned and hurried toward the dining room. Her mother had called her “downstairs for brunch” every day in her youth and her mind had returned to those happy days.

Another tired afternoon I heard a different elderly woman cursing and screaming. A flustered new aide, in a rush to get everyone to supper on time, had wheeled her out of her room against her will. She fully believed that she’d been kidnapped. She scooted to the edge of her wheelchair seat and thrust both feet at the floor, slamming an imaginary brake. Her hands clutched a plastic baby doll with no shirt and wild hair. She shouted for the police, for a gun, for Jesus.

A wise older nurse ran up to her, smiling an authentic smile, and put some sugar in her voice, too: “Mama, the baby’s hungry. Shall I take you to the kitchen and get her some milk?” The patient relaxed, nodded, and picked up her feet. She cradled her baby doll tightly and off they went with purpose, with dignity, with choice.

I once saw a beautiful young nurse let a gentleman believe she was his late wife. She blew him a kiss before she turned out his light.

Sometimes, my father thinks one of his nurses is one of us. He says, “Be good, honey. I love you.” She replies, “I’ll try. I love you, too!”



Chicken Soup for the Soul: Living with Alzheimer’s & Other Dementias is now available for purchase, with all royalties going to the Alzheimer’s Association. Read all the inspiring stories.

Now, when my father tells me he’s a millionaire or that a dead loved one has stopped by for a pleasant chat, I am happy for him. I relax and smile. He relaxes and smiles back. Our hearts connect the same way they always have. His reality is every bit as real to him as mine is to me, and it is okay for me not to shatter the truths of his world.

Alzheimer’s disease has tripped my father and sent him spiraling down a rabbit hole. His nurses have shown me that if I appear in a tree and tell him that this way is this and that way is that, he will simply lose his head. I have given up hope that, like Alice in Wonderland, he’ll wake up from his surreal dream and come back to us. The nurses who have loved and cared for our entire family have helped me make peace with the fact that he is headed to the same place the other Alice, my sister, has gone. These heroic nurses have rushed around in scrubs and coats like White Rabbits. They have hurried between our world and the equally “real” places and times in their patients’ minds.

I am grateful to these nurses for showing me the way through the darkness and chaos of my dad’s dementia. I will be forever grateful to them for showing me my father’s truth where it lies.

Author: Elizabeth Parker Garcia

From the book Chicken Soup for the Soul: Living With Alzheimer’s & Other Dementias by Amy Newmark and Angela Timashenka Geiger. Copyright 2014 by Chicken Soup for the Soul Publishing, LLC. Published by Chicken Soup for the Soul Publishing, LLC. Chicken Soup for the Soul is a registered trademark of Chicken Soup for the Soul Publishing, LLC. Reprinted by permission. All rights reserved.

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Apr 182014
 
Blog-Jim-and-Karen-Forum-2014

When my husband Jim, who just turned 53, was first diagnosed with younger-onset Alzheimer’s disease, I wasn’t quite sure what was going on. The doctor didn’t tell us Alzheimer’s is fatal. He didn’t tell us there is no cure or that we should get our affairs in order. He didn’t tell us how long Jim might have left. He simply said, “See you back in six months.” If you are lucky, your doctor might refer you to the Alzheimer’s Association. I had to find it on my own.

We couldn’t tell anyone. Jim didn’t want to. He had a top security clearance job. He had a mother that had passed away from this very same disease. He knew more than I did. He kept up with his normal routine. He kept living as if there were a million tomorrows.

At the same time, I was starting to live as if there was no tomorrow. I grasped for anything I could that might keep Jim with me—seizing every opportunity to discuss plans and outcomes and new treatments and experiments and research. I was clutching every snippet of time, trying to create lasting memories for us and our two children (who were 5 and 8 at the time).

It was all so hard to take in. He seemed so healthy and fine 95 percent of the time. He was handsome and athletic and smart and rarely got sick. How could it be that in just a few years, he would be taken from me? From his children? From everyone who loves and cares for him?

For a few very long and stressful years, we kept this secret. Maybe the doctor is wrong. Maybe it is a tumor. Maybe it is mini strokes or a thyroid problem or high blood pressure. Couldn’t it be something as simple as lack of sleep or depression? Then Jim’s brother was diagnosed with Alzheimer’s and subsequently passed away at the very young age of 52. It became apparent to me—to us—that this does indeed run in Jim’s family.

That is when it dawned on me; our children are susceptible to this disease. This nightmare could return to our family again and again unless something is done.

Breaking Our Silence

We had long discussions about our future, our options, our finances, how to tell the kids.

Then Jim lost his job.

We had more long discussions. Jim started having more and more symptoms. Then we decided it was time: time to be part of the solution; time to join the cause; time to make sure the whole world understands what a horrible and heartbreaking story we have along with MILLIONS of others.

Three years ago this month, we joined hundreds of advocates from around the country in Washington D.C. for the annual Alzheimer’s Association Advocacy Forum.

We weren’t quite sure what to expect. I was nervous. Although we had been to D.C. numerous times, we had never tried to speak to a member of Congress before. We had never gone through security to enter a building on Capitol Hill, or walked the marble halls. We listened to the echo of our footsteps as we marched closer and closer to the offices of elected officials who can help change the future of this disease—the future that awaits our children.

I was encouraged to share our story. And so I did. And I cried. And Jim cried. Others in our group cried. It was a relief—a relief to be heard; a relief to be doing SOMETHING to make a difference; a relief to get it behind us.

But we hadn’t really gotten it behind us. Jim was still diagnosed, there still was no cure or real treatments or preventions. Which is why last year, we marched ourselves right back to D.C. again. We weren’t as nervous. We knew the routine. We were prepared.

Now, another year has gone by and there is still no cure, no treatments to slow its progression and no prevention. More federal money has been given for research, but not nearly enough (BILLIONS short) and absolutely no new programs and financial help for those of us struggling each day to pay bills and to take care of loved ones afflicted.

So, last week, Jim and I once again descended upon our elected officials to ask for help as part of the Advocacy Forum. We met with Sen. Mark Warner (D-Va.), Rep. Scott Rigell (R-Va) and asked them to support an additional $200 million dollars for Alzheimer’s research and to co-sponsor the Alzheimer’s Accountability Act.blog forum

Both of the Congressmen we met with have supported this cause in the past by signing on to co-sponsor the Hope for Alzheimer’s Act. One is a democrat and one is a republican. They are both businessmen. They understand the damage this disease is doing to our country and our Medicaid system. They understand the dire straits we will all be in if a change doesn’t happen. They both agreed to continue to support us and to be champions for Alzheimer’s families.

The Alzheimer’s Association Advocacy Forum is a great way to be part of something so much bigger than ourselves. It is a way to connect with other families from around the country who face the same struggles and the same loneliness and the same frustrations. We have made friends whom we now keep in contact with and support year round. And each year we meet new friends and are able to rally around them and show them the ropes (so to speak).

Believe it or not, there are even advocates that fly to D.C. to participate who have no connection to Alzheimer’s or other form of dementia. They may work with the elderly or be a student who hopes to become a researcher. For other advocates, the connection may not be direct—they heard a friend of a friend suffered through this disease and decided to support the cause. Each year, the awesomeness of the human race amazes me. It is sometimes hard to remember this when you watch the news or get mired in one bad luck scenario after another. But there are good people in this world who care and who are giving of themselves unselfishly to help others, even for people they don’t know and may never know.

I am proud to be part of this and I know Jim is, too.

The three days we were in D.C. were the liveliest and most energetic I have seen him in months. He was joking and talking and enjoying himself. It makes him feel like he is helping his children. He is helping humanity. He is stopping the very thing that is taking him away from everything he holds so dear.

There is power when we work together. I encourage everyone to contact their representative. Let your voice be heard. Let them know we demand a change. We demand a cure. We demand a different future where families are not suffering from Alzheimer’s disease.

About the blog author: Karen Garner, mother of two, works full time and is care partner for her husband, Jim, who is living with younger-onset Alzheimer’s. She shares her journey through her blog, Missing Jim.

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Apr 072014
 

I’m in Washington, D.C. today as an Alzheimer’s advocate. Why? Three years ago my life took a very unexpected change in course. In 2011 at the age of 56, I was diagnosed with younger-onset dementia, probable frontotemporal dementia (FTD). But my journey, although altered, is by no means over. I have chosen not to let this disease isolate or silence me.

After my diagnosis I found it difficult to locate services and education for people with dementia; everything seemed to be for the caregivers. I started to advocate for more support, and with the help of the Alzheimer’s Association I started a local support group for those affected with Early Stage & Younger Onset Dementias and their caregivers. My involvement with the local chapter of the Alzheimer’s Association led to more advocacy opportunities. I was empowered to share my personal story about this disease, raise awareness and needed funds, while also helping to reduce the stigma associated with dementia.

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As an advocate, I have chosen to use my voice while I still can. It gives me a sense of purpose, and a reason not to give up. I encourage others living with Alzheimer’s and related dementias to consider advocacy as a way to feel empowered and engaged in their own lives.

Last year I attended the Alzheimer’s Association Advocacy Forum for the first time. My experience was an extremely stimulating and overall rewarding opportunity. I felt inspired and motivated by my encounters with other advocates living with dementia. They encouraged me to become more involved. I wanted to contribute by using my insight as a person living with dementia, so I submitted my nomination for the National Early-Stage Advisory Group and I was selected to join the 2013 cohort. Over the past year, I have shared my personal story at the National Alzheimer’s Project Act’s (NAPA) Advisory Council on Alzheimer’s Research Care and Services meeting, attended a Senate hearing for the Subcommittee on Labor, Health and Human Services, and Education, and Related Agencies and met with my state legislators.

It is such a great feeling to connect with others living with dementia and reminds me that I am not alone. With my expectations fulfilled from the last year’s Forum I look forward to continuing to encourage Congress to address the needs of individuals and families affected by Alzheimer’s and related dementias through legislative action. As advocates, we have strength in numbers.

Since devoting my time to advocacy, it has given me a renewed purpose in life.

My hope for the future of Alzheimer’s and other dementias is that this disease will get the recognition that is necessary to find a treatment, and ultimately a cure. Although I know that I will not see the day when a cure is discovered, it is my hope that my grandchildren will know a world without Alzheimer’s and dementia. For us to reach this goal, we will have to work together.

Last week the Alzheimer’s Accountability Act was passed. Experts at the National Institutes of Health will now have an annual opportunity to provide Congress with budget recommendations reflecting the current state of Alzheimer’s research and emphasizing the most promising research opportunities.

Your voice is powerful and needed – and you don’t have to travel to Washington to have it heard. All it takes is a minute and a click of your mouse. Join me in asking Congress to fund the research necessary to reach the goal of the National Alzheimer’s Project Act to prevent and treat Alzheimer’s by 2025 by clicking here.

Thank you!

About the blog author: Terry is living with younger-onset dementia and is a proud member of the national Alzheimer’s Association Early-Stage Advisory Group. In 2013, Terry received the Inspiring Champions Award from the National Capital Area Chapter for her contributions to the local chapter. According to Terry, “A diagnosis of Alzheimer’s or other dementia is not the end of the journey.” Terry lives in Manassas, Virginia. She has three daughters and eight grandchildren.

 

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Mar 112014
 

A few weeks ago, I developed a cough. I went to the doctor, they checked everything out and sent me home. But I wasn’t getting better. I started to worry when the cough got really bad and I was having a hard time breathing.

I called my son, who told me that if it didn’t get better, I should go to the emergency room. By three in the afternoon, I was still Cynthia_alz_bloghaving trouble breathing, so I took a cab from my home in a retirement community to the emergency room.

As with most emergency rooms, the waiting room was pretty full. I checked in, waited my turn and was finally called in.

My first stop was a little room where I talked to someone who got all of my billing and insurance information squared away. She asked me if there was anything she should know about my health history.

“Yes,” I said. “I have Alzheimer’s disease, so you might have to explain things more than once and go slow. And if something is really wrong, you will need to call my son to explain everything.”

She responded with, “You sure don’t look like you have Alzheimer’s!”

My next stop was intake, where I encountered the same question – is there anything the nurse should know?

I went through my spiel again, letting the woman know that I have Alzheimer’s disease and may need to hear things more than once and to call my son if there was a very serious or complicated issue. “I can’t believe it. You just don’t look like you have Alzheimer’s!”

Then, the doctor came in. He, too, asked if there was anything he should know about my health history. I told him about my Alzheimer’s and explained that even though I had been a nurse for many years, sometimes I just don’t understand. He said, “You’ve gotta be kidding me! You don’t look like you have Alzheimer’s!”

This conversation was repeated three more times that day – with the respiratory therapist, another nurse and an x-ray technician. Needless to say, having six different health care professionals tell me that I don’t look like I have Alzheimer’s disease was surprising and a bit troubling.

What exactly does someone with Alzheimer’s “look like?” What should I look like? Should I be unresponsive to my surroundings and bed-bound in a nursing home? Should I be incoherent and confused about where I am?

Understand that I was treated with the utmost respect and kindness by everyone in the emergency room, both before and after I told them I had Alzheimer’s disease. They even took an extra step to show me to my taxi back home so that I didn’t get lost along the way. My experience was a positive one – but it is a telling example of how deep stigma runs with this disease.

The fact that even health professionals – who should know more about this disease process than the average person – were surprised by seeing someone with Alzheimer’s who is vibrant, energetic and articulate speaks volumes.

I hope medical professionals at all levels make an effort to better understand what Alzheimer’s disease “looks like.” I hope that people in the early stages of Alzheimer’s share their diagnosis with more people. This disease may be fatal, but it doesn’t start with bed bound patients and utter confusion. It starts with people like me, who have a face, name, opinion and fulfilling life.

During my visit to the emergency room, I had a meaningful conversation with the x-ray technician, who was one of the people who told me I didn’t look like I had Alzheimer’s. Whenever I speak in public or speak as an advocate for Alzheimer’s awareness and the Alzheimer’s Association, I ask people to remember me. But before I could even ask, she said, “I will always remember you. When I am feeling down, I will think of you and of today and I know it will help me.”

It made my day to know I could positively influence someone’s life – and it keeps me motivated to advocate and share my story so we can end the stigma associated with this terrible disease.

 

About the blog authorCynthia Guzman is a member of the Alzheimer’s Association 2013 National Early-Stage Advisory Group (ESAG) and is actively involved with the Northern California and Northern Nevada Chapter of the Alzheimer’s Association. As an Advisor, Cynthia wants to do her part by spreading awareness about Alzheimer’s and reducing the stigma attached to the disease. Cynthia believes in early diagnosis and the importance of educating physicians on the best ways to support an individual throughout the diagnostic process. Cynthia lives in Napa, California. She has three children and three grandchildren.

This post originally appeared on www.alzheimersblog.org.

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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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Jan 222014
 

Charles WarnerTwo years ago, at the age of 69, I was diagnosed with Alzheimer’s disease. Shortly after receiving the diagnosis, I began to think a lot about the future. The more I thought about the future, the more I realized that I needed to implement plans for the inevitable progression of the disease while I had the ability to do so. This also seemed much more proactive than just sitting around worrying about having Alzheimer’s.

Prior to my diagnosis, I was a practicing attorney in civil litigation for 45 years.  During my career, I did not worry too much about what the future held for me and my family. I simply assumed that I would sell my law practice, and, on occasion, hire myself out as a private mediator of legal disputes. I had been working as a mediator for many years and was certain that I would continue after I closed my actual law office. That, of course, did not turn out as expected.

Accept Your Diagnosis        

As a person living with Alzheimer’s, I have learned that acceptance is essential in making meaningful plans for the future. I know it may be difficult, but accepting the reality of the diagnosis is absolutely necessary to enable those of us living in the early stage of the disease to take the appropriate steps to plan for the future. You want to do this now while you still have the capacity to make your wishes known and have them memorialized in legal documents. While it is important to plan for the future, do not let the fear of the future ruin the life you can live now before the disease progresses.

What does it mean to “plan for the future?” In my opinion, among other things, this means to see to your estate planning. Estate planning is the preparation of wills, trusts, advanced health care directives, and generally what you wish to have happen with all of your assets and possessions upon incapacity and/or death. Collaboration with a legal professional is not required in order to plan for your legal and financial future. You can find copies of advance directives and other estate planning forms through the American Bar Association, office supply stores and your state’s health department or local library.

If you choose to work with a professional, a well-qualified legal advisor can help you prepare the required documents.  Locate an elder law attorney who has expertise in the preparation of the documents necessary to carry out your wishes as to the disposition of your real and personal property. Attorneys doing this type of work usually describe themselves as having expertise in “Estates and Trusts.”

Family and Financial Matters

Discuss your estate plan with your family.  Make a list of the assets you possess. What are they worth? Use the legal and financial worksheet to help you organize this information and share it with your family or your lawyer of choice.

I personally found a great deal of peace in completing the legal documents. It has been completed and implemented now and I no longer have to worry about it. Those of us with Alzheimer’s are better off looking at what we have left… not obsessing about that we have lost.

 

Chuck Warner is a member of the Alzheimer’s Association 2013 National Early-Stage Advisory Group (ESAG). He encourages others living with the disease to be actively involved in planning for their future and engage in a fulfilling life. “An Alzheimer’s diagnosis feels like the end of the world, but it’s not – you can make a difference.”

 

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Jan 132014
 

In this first blog of 2014, I would like to review some of the highlights from the world of Alzheimer’s disease research in 2013, as well as the new directions that we will likely be heading in 2014.Driving on an empty road towards the setting sun 2014

Advances in Brain Imaging 

Advances in brain imaging, specifically amyloid PET scans, have led the way towards earlier identification of Alzheimer’s. Their widespread use in larger studies has made it possible to visualize the presence of beta-amyloid deposition in individuals with no symptoms.

The year began with the publication of additional data showing that amyloid deposition in the brain leads to atrophy, or shrinkage, of specific brain areas, even before patients develop memory loss. Research groups in France, Australia and the United States reported longitudinal studies of amyloid deposition in the brain, demonstrating that its presence predicts subsequent brain atrophy and cognitive decline.

Additional developments in brain imaging were made with results of Avid’s Tau tracers, both of which allow for visualization of the abnormal Tau protein that contributes to the formation of the neurofibrillary tangles of Alzheimer’s. Tau PET scans will undoubtedly become a critical tool in Alzheimer’s research during the next few years, much like amyloid imaging has been so important since the first papers were published on its use nine years ago.

Understanding Alzheimer’s in People with Down Syndrome

In the spring of 2013, the National Institutes of Health held a meeting focusing on Alzheimer’s disease among people with Down syndrome, bringing researchers together to discuss ways to develop a consortium with an aim to understand Alzheimer’s in this highly susceptible population.

- Every person with Down syndrome (DS) will develop AD pathology by age 40

- Half of the Down Syndrome population develops dementia by age 60

The Down Syndrome Biomarker Initiative (DSBI) pilot study was launched this year as a feasibility study of a planned large-scale study to discover indicators of Alzheimer’s disease in Down syndrome, with the ultimate goal of better understanding brain aging and Alzheimer’s in adults with Down syndrome.

Economic Impact of Dementia

A major publication in the New England Journal of Medicine by the RAND Corporation estimated the economic cost of dementia to the United States was approximately $203 billion in 2010. This paper garnered major attention, as it was a well conducted analysis of the economic impact of dementia. The sheer dollar amount is greater than the cost of any other disease faced by our society and is expected to rapidly increase in the next decade.

Trials and Tribulations

2013 was also the year when the long awaited results of the phase III IGIV study were presented, which were unfortunately, negative. Additionally, researchers studying the drug Bexarotene were able to replicate some, but not all of the previously reported effects of this drug on memory and beta-amyloid in mouse models of Alzheimer’s disease. Nonetheless, a placebo controlled clinical trial of Bexarotene was launched this year for the treatment of Alzheimer’s. Results are expected mid-year in 2014.

Prevention and Early Intervention

Perhaps one of the biggest events in the Alzheimer’s research world this year was the launch of the first clinical trial to prevent Alzheimer’s dementia in the general population. The trial, Anti-Amyloid in Asymptomatic Alzheimer’s Disease, or A4, is a three-year study looking at the effectiveness of a drug given to subjects who have absolutely no outward symptoms of memory loss but have positive amyloid scans of the brain. Much will be learned when this study is completed about how soon intervention can be offered in efforts to prevent Alzheimer’s disease.

G8 on Dementia

And finally, global focus on dementia was raised at this year’s G8 summit. All G8 nations made commitments to develop an international action plan for research, share information and data across the G8 countries and to provide unprecedented collaboration. The G8 plan includes open access to all publically-funded dementia research, the introduction of a new global envoy for dementia innovation, and the ambitious aim to “find a cure or disease-altering therapy by 2025.” This plan parallels the U.S. National Alzheimer’s Project Act (NAPA), with a goal of “preventing or effectively treating Alzheimer’s” by 2025.

What Is on the Horizon in 2014?

There are an unprecedented number of clinical trials now running with the aim of preventing Alzheimer’s. As data from recent studies suggest, it may only be through early intervention, before the symptomatic stage, that we can truly affect the course of AD and even consider preventing its dementia stage.

We anticipate more discoveries this upcoming year with Tau imaging, as well as the use of biomarkers in asymptomatic individuals. New data is also expected from large-scale whole-genome studies, which are revealing other Alzheimer’s susceptibility genes. We also look forward to data from some of the new mouse models created with these newly discovered mutations to understand how they contribute to the development of Alzheimer’s, and perhaps represent treatment targets.

We look forward to keeping you updated on the world of Alzheimer’s research in the upcoming year and are optimistic that there will be great developments in 2014.  Stay tuned.

Michael S. Rafii, M.D., Ph.D.

Director, Memory Disorders Clinic
Associate Medical Core Director, Alzheimer’s Disease Cooperative Study
University of California San Diego

This post originally appeared in Alzheimer’s Insights, an ADCS Blog.

 

Dec 232013
 

treeI miss Jim so much during Christmas time. I miss our discussions about what to get the kids and our families. I miss sitting next to our tree, looking at the lights and sharing quiet time together. I miss feeling excited, wondering what thoughtful present he placed under the tree. I miss singing songs, watching movies and so much more. Jim still throws out a hum (actually, lots of hums) during Christmas songs, but it isn’t the same. He is here, but he isn’t here.

Ever since I moved out into this great big world on my own, I have sent out cards every December. Except for last year. And the year before. And the two years before that. I haven’t had the energy. I haven’t felt jolly. And what would I put in there? Oh, life is great. We are watching Jim progress with Alzheimer’s and have no idea what our life will be like next year at this time. Merry Christmas.

The holidays are hard for Alzheimer’s families. I know this, yet I try to think that our holiday will be different. Last year, I was talking to a good friend and lamenting that I didn’t know if it would be our last “good” Christmas with Jim and that I needed to make it special. She very sternly replied, “You don’t know what is going to happen. This may be the best Christmas ever and next year may be even better. You need to just enjoy this Christmas.” It turns out, she was right! Last year we had an awesome Christmas. We probably had the best one ever.

I approached this year with similar hopes. But when I left for work on a recent Monday, I asked Jim to put the greenery and lights up on the porch, as he has done for as long as we have been together. While I was in a lunch meeting, Jim called. I heard him crying. “I just can’t do it. I can’t put them up.”  Why? Why did I ask him to do this? Why do we have to decorate our house for Christmas? Why can’t I find the time to do everything? Why? Why? Why?

I told him I was sorry, that I should have never asked him to do it. There really is this very fine line to walk. I have to give Jim tasks to do, yet I must make sure they are tasks he is able to do. Sometimes the “simplest” thing he did just a week ago seems foreign to him. Sometimes I forget he can’t do it. On top of that, Jim is still aware of what he isn’t able to do and it is a very hard pill for him to swallow.

Despite these moments – and the moments I feel the sadness and isolation this disease brings, I am still thankful for many things. I start with being thankful for my children. They are what motivates me, inspires me and keeps me smiling. I am thankful that I have Jim as my husband. He has been the most wonderful man, father and friend. Each day he continues to lead our family by example. He shows us all how to put our big pants on, live each day as it comes and do the best you can. He has no expectations, so he is never disappointed. That is all any of us can ask or hope for, no matter what our situation.

I am also thankful to all of those who donate time, money and energy to finding a cure to this horrible disease that has taken over my life and so many others’ lives. Thank you for being so generous and for believing that one day, we will all feel a sense of accomplishment. We will feel we were part of the solution.

Until that day, we will carry on our traditions for as long as we can. We may start new ones. We may lose a few along the way. But we will do it with each other. I love my family. I am grateful we have so much, when so many are in need. I am grateful it has been such a great year. I am grateful for all I have—and yet I still feel sad.

I miss Jim.

missingjim

About the blog author: Karen Garner is a mother of a 9-year-old son and a 12-year-old daughter.  She works full time and is care partner for her husband, Jim, who is living with younger-onset Alzheimer’s. She shares her journey through her blog, Missing Jim.

 

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