ALFA speakers: Alzheimer’s needs more attention

The effort to find a cure for Alzheimer’s disease faces challenges related to funding and clinical trial participation, among others, members of a panel discussion told attendees of Wednesday’s opening session of the Assisted Living Federation of America’s annual meeting in Tampa, Fla. And yet reasons for hope exist, they said.

Of the top 10 diseases from which people die, Alzheimer’s, number six, is the only one for which the death rate has increased over the past 10 years, according to panelist Bill Frist, MD, former U.S. Senate majority leader and heart and lung transplant surgeon.

Yet, “by 2020, we will have the tools to prevent Alzheimer’s disease,” predicted David Morgan, PhD, CEO of the Byrd Alzheimer’s Institute and professor at the University of South Florida College of Medicine. By 2025, he added, researchers will have determined how to slow disease progression in those who already have the disease.

Clinical research will help those milestones be reached, yet Alzheimer’s is funded at one-tenth the level of cancer and one-sixth the level of AIDS, Morgan said. And the National Institutes of Health funds only eight percent of proposed Alzheimer’s research, he added, saying that he’d like to see that percentage increased to 10. But clinical trial research of potential Alzheimer’s treatments will need participants, Morgan said, and assisted living communities can play a role in making residents and their families aware of the opportunity.

Getting a drug to market is time-consuming and expensive, Frist said. On average, he added, obtaining drug approval from the Food and Drug Administration (FDA) takes 11 years and a $1.5 billion investment from a pharmaceutical company, he said. But that’s about to change: Frist said that Congress will take up FDA reform later this year.

And as people live longer, with or without Alzheimer’s disease, they will need to finance the healthcare and lifestyle choices of their later years. The financing of aging, including long-term care insurance, is a gap that exists in the healthcare system, Frist said, and public policy is not addressing it. In fact, he added, it’s the biggest issue not being addressed via public policy.

What can communities do?

In addition to encouraging clinical trial participation, what can those working in assisted living do?

• Talk with representatives in government as well as the media, and share success stories on social media, Frist said. When he was a senator, he added, topics that constituents brought up to him frequently were likely to stay top-of-mind.
• Sign up at USAgainstAlzheimers.org for weekly tips on how to advocate for more funding to fight the disease, said panelist George Vradenburg, co-founder and chairman of USAgainstAlzheimer’s.
• Remember the roles that diet, exercise, room design and engagement through activities play in dementia care, Frist said.
• Look for the USAgainstAlzheimer’s announcement of a national dementia-friendly community initiative in the next couple of months, Vradenburg said, and think about ways your community can participate.

Journalist Ann Compton moderated the panel discussion.

Lois Bowers

Lois A. Bowers was senior editor of I Advance Senior Care / Long-Term Living from 2013-2015.