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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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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Sep 192012
 

For the past eight days, I have been walking—a journey of more than 200 miles in total. I chose to make this trek for each and every one of more than 5 million people suffering with Alzheimer’s disease—and in particular, for my father, Lt. Col. Carl Rabon Stephens, who is a retired army chaplain.

Why am I walking to Washington, D.C.?  Because we need to ensure the passage of $100 million dollars for Alzheimer’s research and support programs in the FY2013 federal budget.  The opportunity to elicit change is now and it begins with me.  My voice is powerful, and I want to use it on behalf of my dad.

My father spent his whole life caring for others in crisis and Alzheimer’s disease no longer allows him to do so. In just one short year, he lost the ability to continue his work with chaplains at Walter Reed Hospital as an expert on how to counsel soldiers coming home from Iraq.  The idea that one day he will no longer have these memories—those of his family and the countless families he has helped—is unbearable.

My father was recently moved into a nursing home because his wife and I can no longer provide the level of care he now requires.  As families each and every day shoulder the tremendous emotional, physical and financial toll of caring for a loved one with Alzheimer’s day after day, year after year, they need action today. They cannot wait and neither can I.

I am walking to Washington, D.C. to bring awareness to this worldwide health crisis and help focus attention on the urgent need for more research funding to help find effective treatments and ultimately a cure.  The current national level of Alzheimer’s research funding pales in comparison to other diseases and the time is now to attack this problem with the same level of commitment that we have other major life threatening diseases.

The investments made in research funding for cancer, heart disease and HIV/AIDs (close to $14 billion combined annually) have had positive results. They have resulted in more lives saved and more money saved in direct care costs. As a nation, we are currently investing nearly $500 million for Alzheimer’s research and Alzheimer’s will cost the nation $200 billion in direct care costs in 2012 – this includes $140 billion in Medicare and Medicaid costs. There is something wrong with this picture!  I am walking to create a picture, a new future and new possibility. I am walking to help change the trajectory of Alzheimer’s disease.

During my journey, I plan to bring this to the attention of any and all I can, through local, regional and national media, and by sitting down with as many elected officials as will meet with me. While my voice is powerful, our voices together are more powerful.

I want to encourage others—volunteers, caregivers, people with the disease, family members, YOU — to join me. Tell your story and reach out to your members of Congress to urge them to ensure the inclusion of $100 million in Alzheimer’s research funding in next year’s federal budget.  Sign up for a local Walk to End Alzheimer’s®. Sign up to be an Alzheimer’s advocate. Be part of the movement to end Alzheimer’s.  There is not a lot we can do for those who have passed on or who are currently fighting this disease, but we owe it to them to do everything we can to treat and ultimately end this insidious disease for future generations.

Together we can shift the course of Alzheimer’s disease.  Now is the time! Please join me!

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About the Blog Author: Dave Stephens is the President of the Board of Directors of the Alzheimer’s Association of South Eastern Virginia. His father, Lt. Col. Carl Rabon Stephens, is living with Alzheimer’s. Dave resides in Virginia Beach with his wife, Debbie, and is the proud father of a 21 year-old daughter.

 

Apr 232012
 

My mother had Alzheimer’s disease, and what it did to her was just terrible. Her mother had it too. A few years ago, my wife, a retired nurse, noticed that I was having short-term memory problems. When I got lost trying to find my way around a familiar hospital campus, we decided that I needed to be medically evaluated. That was in 2010, and I was diagnosed with an “early-stage” memory problem.

A year later, I found out that I carry the ApoE 4 gene, which means I have a genetic risk factor for developing Alzheimer’s disease. This gene was passed down to me from my mother’s side of the family. My doctor informed me that I had mild cognitive impairment, meaning that I was at increased risk for Alzheimer’s. This January, I learned that I had progressed to early-stage Alzheimer’s.

When I was diagnosed, I got very down. But I’m an extremely positive person, and I don’t take “no” for an answer! I said a prayer and asked for help, because I was tired of being negative. I turned things around in one day. I decided that I’ve got Alzheimer’s and it’s got a hell of a fight with me!

I started giving presentations about Alzheimer’s disease. With support from my local chapter, I speak at houses of worship, corporations, community organizations — anywhere that will have me. I do this to raise awareness, and in hopes that there will be a day when Alzheimer’s can be prevented, effectively treated and cured. My kids are in their 40s, and they may have the gene. I do this work for them, and for their kids. I do it for the future.

I will continue to use my voice to fight this disease as long as I can. I will never give up. And I’m hoping you will join me by signing the Alzheimer’s Association Petition for a strong National Alzheimer’s Plan. Right now, I am with hundreds of other advocates at the Alzheimer’s Association Advocacy Forum in Washington, D.C. This week, we will deliver a message to our elected officials that Alzheimer’s can’t wait. You can make that message stronger by adding your name to the petition. To sign, click here.

The more that I’m involved, the more I find that fear is the greatest obstacle to defeating this disease. People don’t want to know how cruel Alzheimer’s is, or what’s coming down the pike if this country doesn’t get a fix on it soon. But together, we can raise awareness and work toward a future where our children and grandchildren don’t have to face this disease.

Today’s guest blog comes from Bill Frost, a member of the Alzheimer’s Association’s® national 2011 Early-Stage Advisory Group, a council that helps the Association raise awareness of the issues faced by people with Alzheimer’s, advocate for research and support programs and provide the best services possible to people with the disease. Diagnosed with early-stage Alzheimer’s in January 2012, Bill is a retired telecommunications executive and consultant. He and his wife of 51 years, Nancy, live in Houston, Texas. They have three children and one granddaughter.

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