Alzheimer’s Advocates: Agitating for a Cure

Published In Blog

April 29th, 2018

Spurred by speculation that one disease was supplanting all others as the country’s biggest and most intractable health crises, Congress passed the National Alzheimer’s Project Act, which was signed into law in January 2011.

The Act required:

  • A concrete national plan for overcoming Alzheimer’s
  • Coordinating research and services offered by federal agencies
  • Accelerating development of treatments to prevent, halt, or reverse the course of the disease
  • Improved methods of early diagnoses and systems of coordinated care, and
  • Populations at higher risk for Alzheimer’s, such as African-Americans and Hispanics, to be included in the research and service efforts.

About 16 months later, the mandated National Plan to Address Alzheimer’s Disease was released. The plan included a push and a promise: by the year 2025, Alzheimer’s could be treated and prevented.

Part of the plan proposed throwing money at the problem. President Obama earmarked an unprecedented $122 million for increased efforts to stem the tide of Alzheimer’s. The bulk of it — $100 million — was allotted to support additional research on the still-elusive treatment and cure for the disease.

The budgeted amount also included:

  • $4.2 million to improve public awareness of the disease and help reduce its stigma
  • $4 million to fund provider education programs
  • $10.5 million for home and community-based services, and
  • $3.3 million to support caregivers.

That initial step-up in funding has spawned more budget increases. In March of 2018, for example, Congress approved a $414 million increase for Alzheimer’s and dementia research funding at the National Institutes of Health (NIH), raising funding there to $1.8 billion.

But few of those funds would have been freed without the dogged efforts of the groups and individuals who have become Alzheimer’s advocates.

How to Get Involved

Advocating for Alzheimer’s involves much more than signing petitions — though petitions have their places. It requires learning about the disease, spreading awareness about what’s required to help treat and stop it, and pressuring the right politicians and other decision-makers to stay focused on making progress.

If you have strong feelings about ending Alzheimer’s, there are a number of steps you can take to become an effective advocate.

Get educated. Those best equipped to press for progress know some of the facts about how and why Alzheimer’s has become one of the most dreaded diseases in America, as well as the financial toll it takes on family members, other caregivers, and government programs.

There are a burgeoning number of resources to consult for help in getting more knowledgeable.

Among the best are:

  • The Alzheimer’s Association, the long-running voluntary health organization providing care, support and research
  • The Alzheimer’s Foundation, which provides information and resources for caregivers and healthcare professionals
  • alzheimers.gov, the federal government’s portal to information on Alzheimer’s disease and related dementia, and
  • Programs for the Elderly, which maintains a robust listing of programs nationwide aimed at assisting and educating those with Alzheimer’s and their caregivers.

Learn the ins and outs of advocacy. Recognizing the pressing need for focusing on the issue, some groups offer specific resources for how to become an effective Alzheimer’s advocate.

They include:

US Against Alzheimer’s, which describes itself as “a community of engaged and enraged individuals who have been touched by Alzheimer’s disease and are united by our frustration at a broken status quo,” publishes an Alzheimer’s-specific Activist Toolkit, and

The Alzheimer’s Disease Resource Center, a New York-based nonprofit, also offers tailored materials that could serve as a model for the rest of the nation.

Monitor your own health.“Get a checkup from the neck up,” says Jason Resendez, chief of staff at UsAgainstAlzheimer’s, a group that’s pressing to end Alzheimer’s by the year 2020, even five years earlier than the federal government. He underscores that the best advocates lead by example. And he highlights the little-known fact that Medicare wellness exams now include annual cognitive memory tests for those who request them to help increase early diagnoses of dementia. “Don’t let doctors say, ‘Let’s give this a year or two and see what happens,’” he says. “You wouldn’t do that if you thought you had cancer. You shouldn’t do it if you’re worried about dementia.”

Tell your story. Personal stories usually resonate most loudly when you’re attempting to influence another person or get across a particular point of view. This is especially true when trying to sway those who have the power of the pen to increase funding and programs for Alzheimer’s: legislators, who after all, are human, too. Get personal and be specific. Summarize how and why the disease has affected you and others close to you. Then communicate its clear effects on your life directly to those involved in making decisions and policies related to healthcare. You can learn about local and national efforts to fight to end the disease by registering with the Alzheimer’s Association’s Advocacy Center.

Participate in trials. Clinical trials — the pathways to formulating future effective drugs — are now recruiting healthy people, as well as those with mild cognitive impairments and full-blown Alzheimer’s to participate. Find local clinical trials through the Alzheimer’s Association’s Trial Match.

One of the biggest proponents of participating is Brian Kursonis, who was diagnosed two years ago with early onset Alzheimer’s when he was age 54.

Kursonis has since become a familiar face advocating for more support for clinical treatments and cures. He shares his insights and perspectives on Alzheimer’s on his blog, WithAlzMyHeart, where he hopes to help others navigate their diagnoses.

Kursonis also appears in “Go Boldly,” a national campaign media campaign recently launched by the Pharmaceutical Research and Manufacturers of America (PhRMA) that features researchers and patients. He speaks eloquently, sometimes tearfully, in the campaign’s initial video.

“My great-great grandfather lived to be 118 years old, so I thought I had really good genetics. It wasn’t Why did this happen to me?, it was: This isn’t supposed to happen to me. It should be impossible this happened to me,” he says. Then he adds: “I’m not a researcher. I’m not a doctor. But I know that if we raise the awareness about the disease, more will become researchers. Eventually they’ll have some breakthroughs. And I may not benefit from those breakthroughs. But I’m sure gonna . . . I’m gonna give it my best.”

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