Moving Toward a Cure for Alzheimer’s and Living Well Now

July 24, 2017  
Filed under Health & Wellness

ALZ- Graze Potter pic

One of the many teams who took part in the 2016 Walk to End Alzheimer’s. (left to right) Vermont singer/songwriter Grace Potter; Promise Garden representatives Greg Lothrup, Walt Gundel, Kay Howley and LIsa Beilstein; and Emcee Eva McKend from WCAX-TV. (Courtesy Photo)

By Martha Richardson, Alzheimer’s Association, Vermont chapter

I’ll bet you’ve heard or read at least one story about Alzheimer’s or a related dementia in the last week. You may have even had a recent conversation about a family member or friend who is dealing with dementia. That didn’t happen often five or six years ago, but times are changing. And that’s making a profound difference in the world of Alzheimer’s. 

Like our fellow baby boomers, we want to assure our best health outcomes for the future, and that includes addressing dementia. Advocacy efforts around dementia have dramatically increased since boomers began reaching retirement age. The power of our voices resulted in the development of the National Plan to Address Alzheimer’s Disease. One of the goals of the plan is to develop a disease modifying treatment or cure by 2025. That goal, along with the enthusiastic support of the research community, has spurred significant growth in dementia specific research through the National Institutes of Health making this a very exciting time for Alzheimer’s disease research.

 

(Left to Right) Sheila, Jim and Brooke Dooley at the Vermont Statehouse. (Courtesy photo)

(Left to Right) Sheila, Jim and Brooke Dooley at the Vermont Statehouse. (Courtesy photo)

Advances in Alzheimer’s research

The Alzheimer’s Association is confident that better treatments, earlier detection and prevention strategies will be available in the foreseeable future. The speed with which those achievements occur is directly related to the commitment to Alzheimer’s and dementia research. No one should have to face the devastating effects of Alzheimer’s and dementia. For this reason, treatment and prevention is an important area of Alzheimer’s research.

The currently approved Alzheimer’s drugs, while modestly helpful to many people, are unsatisfactory. They do not change the course of the disease, but they do provide some symptomatic relief to some people with Alzheimer’s. 

Perhaps the most exciting current research efforts are the ongoing Alzheimer’s prevention studies — testing to see if we can intervene with people at high risk before the dementia symptoms start. The Alzheimer’s Association is providing funding to four of these trials.

The Alzheimer’s Association leads or supports a variety of initiatives to accelerate the process of developing new and better treatments for the disease. We are the largest private, nonprofit funder of Alzheimer’s disease and dementia research. We host premier global forums — such as Alzheimer’s Association International Conference — for scientists to connect across disciplines, address common challenges, and share new discoveries. In addition, we offer TrialMatch — a free, easy-to-use clinical studies matching service that connects individuals with Alzheimer’s, caregivers, and healthy volunteers with current research studies. Visit alz.org/research to sign up or learn more about TrialMatch.

In addition, we are developing simpler tests and new technologies to detect signs of Alzheimer’s disease earlier. Using advanced imaging technologies, such as PET and MRI scans, we can now see Alzheimer’s-related changes in the brains of living people. Studies are currently looking at simpler technologies, such as blood tests, for early Alzheimer’s detection. By diagnosing Alzheimer’s earlier we may be able to better treat people with the disease. When we have new therapies, we’ll have better knowledge of who needs help at the earliest time point.

We applaud Congress for hearing the call of our nationwide network of advocates and taking 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 National Institutes of Health 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 acted on by our federal leaders.

“The Alzheimer’s Association and our sister organization, the Alzheimer’s Impact Movement, represent millions of families facing Alzheimer’s disease, and we know firsthand the importance of investing in research to advance faster against this deadly disease,” said Harry Johns, Alzheimer’s Association and Alzheimer’s Impact Movement president and CEO. “This is the latest in a series of policy victories in the fight to end Alzheimer’s, but more work remains. As the leading voice for those affected by the disease, the Alzheimer’s Association, AIM and our advocates will continue to work with Congress to ensure continued bipartisan support for urgently needed research funding increases and access to necessary care and support services.”

While we are energized by this momentum, leading experts have said a greater investment is still needed if we are to stay on the path to preventing and effectively treating Alzheimer’s by 2025. Demonstrating the urgency of this crisis, the NIH Professional Judgment Budget commissioned by Congress has already recommended a $414 million increase in spending on Alzheimer’s disease research for fiscal year 2018.

Alzheimer’s Association launches LiveWell

Currently, there are an estimated 5.5 million Americans living with Alzheimer’s. Following diagnosis, it is not uncommon for individuals to feel disconnected, isolated or abandoned by others. Denial and fear of what will happen as the disease progresses can prevent many individuals from facing their diagnosis.

The Alzheimer’s Association recognizes that helping people adjust to the diagnosis is important. We have created new online resources to help those in the early stage of Alzheimer’s disease to live well. LiveWell offers interactive tools, including video insights from those living with the disease, to help users navigate the personal and emotional challenges that accompany an Alzheimer’s diagnosis.

LiveWell resources and activities help those living in the early stage confront disease-related challenges by providing personal insights and strategies on how to live a quality life with dementia for as long as possible. We hope that by hearing from others living with the disease, users will begin to embrace the notion that there is life after a diagnosis and use the LiveWell tools to gain a sense of control over their lives.

The LiveWell series features distinct resources addressing issues relevant to the early-stage experience. Several include interactive activities that allow users to enter customized responses and generate a personalized summary detailing the steps they can take to live well. Each activity was created with input from people living in the early stage of dementia. Some of the resources include:

Life After Diagnosis

The adjustment to a “new normal” after the diagnosis of Alzheimer’s or another dementia is often a period with difficult emotions and uncertainty about the future. This tool contains video reflection from individuals living in the early stage who recount the emotions they experienced after receiving their diagnosis and the process they went through to accept it.

You Are More Than A Diagnosis

A diagnosis and the accompanying losses may impact how an individual sees him- or herself. This experience contains an activity that encourages individuals living with dementia to explore unique aspects of their identity. A personalized word cloud is generated from their responses with “Living with dementia” appearing alongside customized entries to demonstrate that the individual is not defined by their diagnosis. Individuals can download and share the image of the word cloud.

Maximize Your Independence

Living with dementia may present daily challenges that cause a person to focus on their losses rather than their strengths and the support available to them. This resource contains an activity that encourages individuals living with dementia to consider strategies to live a quality life and identify how others may be able to help them with day-to-day activities both now and in the future. Individuals receive a personal plan based on their responses that can be shared with others to start a conversation about how they may be able to help maximize independence.

“These resources address important issues that can help individuals living in the early stage of the disease identify what’s important and how they can move forward,” said Pamela Beidler, director of programs and outreach at the Vermont Chapter. “We encourage individuals living with the disease to use these resources to begin conversations with their care partners about how they can help them to live as well as possible for as long as possible. Engaging in these materials together encourages conversation and can provide a common direction in a life that inevitably changes after a diagnosis.”

The LiveWell materials were developed with funding from the Cigna Foundation World of Difference Grant. Learn how to live well with dementia in the early stage at alz.org/livewell.

Nancy Sterns Bercaw, author and Alzheimer's advocate, addresses the crowd at The Longest Day Rally on Church Street in Burlington. (Courtesy Photo)

Nancy Sterns Bercaw, author and Alzheimer’s advocate, addresses the crowd at The Longest Day Rally on Church Street in Burlington. (Courtesy Photo)

Be a catalyst for change

June was Alzheimer’s and Brain Awareness Month. The Alzheimer’s Association wants your help all year long in raising awareness of Alzheimer’s disease and its impact on individuals and families both here in Vermont and nationwide.

In Vermont, more than 12,000 people have Alzheimer’s or another form of dementia. By 2025 more than 17,000 Vermonters will be affected — an increase of more than 41 percent. Everyone who has a brain is at risk to develop Alzheimer’s. But we’re at the tipping point for changing the trajectory of this disease. We’ve gained great momentum in the recent years, but we must continue to build awareness, support and resources.Join us to #ENDALZ!

 Share the facts about Alzheimer’s, and how it impacts families in Vermont.

Be inspired by people who share their experiences with the disease.

Early detection matters. Learn the 10 Warning Signs of Alzheimer’s Disease. Get started at alz.org/10signs.

Keep your brain healthy. Find out how at alz.org/10ways.

Please join in this critically important fight with us in whatever way you are able.

For more information on Alzheimer’s disease or available resources, visit alz.org/vermont or call 1-800-272-3900. Get involved! Call Martha Richardson at 316-3839 or email martha.richardson@alz.org. 

Martha Richardson is the executive director the Alzheimer’s Association, Vermont chapter. 

 

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