UsAgainstAlzheimer’s A-LIST® survey comes after FDA approval of first disease-slowing treatment for early-stage Alzheimer’s disease and MCI

Washington, D.C. (August 24, 2021) – A new survey of the UsAgainstAlzheimer’s A-LIST® shows nearly 90 percent of the wider Alzheimer’s and dementia community see the importance of early diagnosis of Alzheimer’s disease and related dementias. In a key finding, nearly a third of the respondents (31.7 percent) think early diagnosis has become more important in the past year.

The survey, fielded July 16 through August 4, found that 82.6 percent of respondents viewed early diagnosis as very important, with an additional 7.3 percent viewing it as moderately important. The survey respondents were comprised of 923 people who were diagnosed with Mild Cognitive Impairment (MCI)/Alzheimer’s disease or another form of dementia, those who consider themselves ‘at risk’ for dementia, current and former caregivers, and people interested in brain health.

The survey was taken several weeks after the Food and Drug Administration (FDA) approved Biogen’s Aduhelm, the first disease-slowing therapy for early-stage Alzheimer’s and MCI. In addition, accurate early detection of Alzheimer’s is vital because it is possible to slow, delay, or potentially even prevent Alzheimer’s disease and related dementias; a 2020 research study from the Lancet Commission found that up to 40 percent of dementia cases could be preventable through implementing behavior changes around 12 modifiable risk factors.

In comments, respondents to the A-LIST survey said that early detection is more important now than a year ago because it allows additional time for intervention, more effective management of disease progression, and a chance to prepare financial and legal affairs. 

As one caregiver wrote, early diagnosis allows for: “time to prepare, (get) legal forms in order, POA, make end of life decisions and future care decisions (choose assisted living). Take family photos. Create memories for family to hold (go on a few more family trips). Improve diet and increase mental stimulation early on in case this may help slow progression.”

The survey found that 37.2 percent of the respondents who believe they are at risk of developing Alzheimer’s or another dementia said their willingness to find out their diagnosis would be affected by existence of an approved drug that would slow the worsening of the disease.

“Families and health care providers can use these results as conversation topics to promote brain health, reduce the negative stigma toward dementia, and encourage early detection screenings,” says Fayron Epps, PhD, RN, Assistant Professor of Nursing, Emory University. “These results also highlight that everyone has a voice and should be included in treatment and policy discussions.”

But the feeling that getting a diagnosis doesn’t matter persists, as 25.2 percent of the survey respondents who are at risk, interested in brain health or caregivers say they are worried about their brain health – but don’t think they can do anything about it. Nearly half of this group (48.9 percent) categorized themselves as excited about the possibility to maintain or improve their brain health; another 24.6 percent are worried about brain health decline but knew how to prevent/delay decline.

“It is gratifying to see that three-fourths of this survey’s respondents feel empowered when it comes to their own brain’s health and fitness,” added Sandra Bond Chapman, PhD, Distinguished Professor and Chief Director of the Center for BrainHealth. “The message is getting out – the brain has a lifelong ability to get stronger and enhance our quality of life, and every one of us can jump into the driver’s seat, no matter our age or circumstance.”

Other key findings include:

• 82.6 percent of the survey respondents said they were aware of a new drug treatment for early Alzheimer’s that had been approved by the FDA. The agency’s approval of Aduhelm in early June has received widespread coverage, including concerns about the drug’s $56,000 annual list price, its effectiveness and the regulatory review process.

 

• 85.7 percent of those diagnosed with Alzheimer’s or MCI considered it important to have access to a treatment that is approved by the FDA that would allow them to experience an additional year without worsening symptoms, but with the understanding that there is a chance of side effects.

Findings Support CHANGE Act Legislation to Encourage More Screenings

The new survey findings reinforce the importance of passage of the CHANGE Act, bipartisan legislation introduced in Congress to promote earlier detection and diagnosis of Alzheimer’s disease by healthcare providers during the Annual Wellness Visit by patients covered by Medicare.

With someone in the United States developing Alzheimer’s every minute, UsAgainstAlzheimer’s and a range of other groups strongly support the CHANGE Act because more than 60 percent of Alzheimer’s cases in adults over 65 years old go unrecognized.

Survey Methodology: The survey, taken July 16 – August 4, 2021 by the UsAgainstAlzheimer’s A-LIST®, had 923 responses. Of the total respondents, 860 described their status: 70 diagnosed with MCI/AD, 154 current caregivers, 198 former caregivers, 291 people who identify as ‘at risk’, and 147 people with general interest in brain health.  About 9.5 percent of respondents were non-Caucasian.  This research is overseen by the Advarra Institutional Review Board.

This UsAgainstAlzheimer’s survey was made possible in part by the generous support of Shawn Taylor and KPB Corporation; and with research support from Dr. Fayron Epps , PhD, RN, Assistant Professor of Nursing at Emory University; and the Center for BrainHealth at the University of Texas at Dallas.

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About UsAgainstAlzheimer’s

UsAgainstAlzheimer’s exists to conquer Alzheimer’s disease. We take on the toughest problems; bring all of “Us” together to break down barriers; advocate for research that will speed treatments to market; and drive changes that matter most to people living with the disease. We will not rest until brain-span equals lifespan - for everyone.