December 14, 2022
Drug companies and medical research centers around the country are testing dozens of new drugs and treatments for Alzheimer’s disease. But a new study suggests they may have a hard time finding enough volunteers, as well as volunteers who are representative of the overall population, to complete those vital studies.
Only 12 percent of adults aged 50 to 64 who were surveyed said they would be “very likely” to enroll in a trial to test a new drug to prevent dementia. Although another 32 percent they would be “somewhat likely” to join such a study, more than half remained “unlikely” to volunteer in such trials.
The findings come from the National Poll on Healthy Aging, based at the University of Michigan, and represent data from a nationally representative sample of 1,028 Americans in their 50’s and early 60’s. They were published in the Journal of Prevention of Alzheimer’s Disease.
The results underscore one of many obstacles that Alzheimer’s researchers face in developing effective new treatments and strategies to combat the disease. The underlying cause of Alzheimer’s remains poorly understood, and the therapeutic strategies that have been undergoing testing in recent years have not been yielding satisfying results while being extremely expensive to carry out. Finding enough volunteers to test promising new treatments represents yet another important and often overlooked challenge.
“Our analysis shows that the 56 percent of respondents who say they’re not likely to take part in a dementia prevention drug trial mainly cite concerns over being a ‘guinea pig’ or the potential for harm,” said the study author Chelsea Cox, a doctoral student in public health at the University of Michigan. “Nearly one in four said it’s because they don’t think dementia will affect them.”
Those who had a family history of Alzheimer’s disease or another form of dementia, or who believed they’re likely to develop dementia, were more than twice as likely to say they’d sign up to test a new drug. So were those who have talked about dementia prevention with a doctor, although they accounted for only 5 percent of those surveyed.
The authors noted that current drug trials for dementia prevention often fail to recruit a nationally representative pool of participants. As a result, such studies may not accurately represent the drugs’ performance across a wide range of racial and ethnic groups.
Taking part in a clinical trial does not cost anything for volunteers financially, and it can provide vital information for current and future generations. But 15 percent of those surveyed said the time commitment was a deterrent to joining a study.
The study authors hope that more doctors will talk to their patients about the importance of taking part in studies and developing new treatments to reduce dementia risk. Discussing the safety of trials and minimizing the burdens involved for participants could also be key in recruiting more volunteers.
Various government web sites and universities offer information about joining a clinical trial, including new and upcoming studies of new treatments for Alzheimer’s disease. Among them are:
National Institute on Aging’s Clinical Trials Finder
Alzheimer’s Association’s TrialMatch
Your doctor may also have information about clinical trials that may be right for you or a loved one.
By ALZinfo.org, The Alzheimer’s Information Site. Reviewed by Marc Flajolet, Ph.D., Fisher Center for Alzheimer’s Research Foundation at The Rockefeller University.
Source: Chelsea G. Cox; M.A. Davis; J.D. Grill; J.S. Roberts: “US Adults’ Likelihood to Participate in Dementia Prevention Drug Trials: Results from the National Poll on Healthy Aging.” Journal of Prevention of Alzheimer’s Disease, October 19, 2022