A third of assisted living residents have Alzheimer’s disease or dementia, according to the Centers for Disease Control and Prevention’s National Center for Health Statistics. And even though many in the senior living industry earn their livelihoods by serving such residents, they no doubt are hoping for the day that those services no longer will be needed.
Dementia is a terrible disease, as many of us know from personal experience. Although drugs such as lecanemab and aducanumab have offered glimmers of promise, more research is needed about these and other treatments. More than 100 drugs that could slow disease progression are in clinical trials right now, according to the Alzheimer’s Association.
In a newly published study of 1,028 adults aged 50 to 64, however, 56% of participants said they were not likely to take part in a trial of a dementia-prevention drug. Why? The greatest percentage of survey respondents, 39%, said they did not want to be “guinea pigs,” 23% said they thought that dementia would not affect them, 22% said they were afraid of being harmed by the research, 15% were concerned that participation would take too much time and 5% reported a fear of learning information about themselves. The researchers did not see any differences across age, sex, and racial and ethnic groups.
The study was conducted as part of the National Poll on Healthy Aging based at the University of Michigan Institute for Healthcare Policy and Innovation. Results were published in October in the Journal of Prevention of Alzheimer’s Disease.
The researchers noted that the data were collected in 2018 and that the pandemic and the Food and Drug Administration approval of aducanumab, the first novel therapy for Alzheimer’s approved in almost two decades, may have changed some people’s minds about clinical trial participation.
But it’s clear that the US National Plan to Address Alzheimer’s Disease goal to prevent and effectively treat Alzheimer’s disease and related dementias by 2025 — a little more than two years away at this point — remains elusive. And it is clinical trials that will lead to prevention and treatment, wherever that happens.
“The findings suggest that recruitment interventions focused on increasing knowledge of dementia risk and prevention trials, and involving healthcare providers, may be effective tools to improve enrollment rates, regardless of target community,” the study authors wrote.
They also said that it might be helpful to prioritize those with a family history or a perceived personal risk for dementia, as such folks were more than twice as likely to say they’d sign up to test a new drug.
Also, the authors said, clinicians should talk with their patients about participating in studies and the safety of such trials, and they should try to minimize the burden of participation.
Senior living, no doubt, can play a bigger role in speeding things along as well.
Lois A. Bowers is the editor of McKnight’s Senior Living. Read her other columns here.