US Adults’ Likelihood to Participate in Dementia Prevention Clinical Trials: Results from the National Poll on Healthy Aging

Abstract

BackgroundRecruitment to dementia prevention clinical trials is challenging, and participants are not representative of US adults at risk. To inform future recruitment strategies, the field needs a better understanding of public attitudes toward dementia prevention research.MethodWe analyzed data from a subset of respondents to the University of Michigan National Poll on Healthy Aging (October 2018 wave), ages 50-64, who completed a supplementary poll on dementia and brain health. Our primary outcome was likelihood to participate in a dementia prevention clinical trial (collapsed into very/somewhat likely versus not likely). Logistic regression models were used to examine associations between sociodemographic and dementia-related factors (e.g., family history) and likelihood to participate. Among respondents not likely to participate, we examined frequency of reasons endorsed, stratified by age, sex, and race/ethnicity.ResultAmong 1,028 respondents, 44% reported being at least somewhat likely (12% very likely) to participate in a dementia prevention trial. In adjusted analyses, there were no differences in likelihood to participate by sociodemographic characteristics. Factors associated with higher likelihood to participate were higher perceived likelihood to develop dementia [adjusted OR, 2.04 (95% CI, 1.53, 2.72)], family history of dementia [adjusted OR, 1.89 (95% CI, 1.38, 2.57)], and having discussed dementia prevention with a doctor [adjusted OR, 2.31 (95% CI, 1.20, 4.44)]. Among the 570 respondents not likely to participate, 38% did not want to be a guinea pig, 24% did not think dementia would affect them, 22% thought there would be too high a chance for harm, 16% indicated it would take too much time, and 5% reported fear of learning information about oneself. Compared to females, males more frequently endorsed that dementia would not affect them (28% versus 20%; p = 0.03). No other differences among demographic groups were observed.ConclusionIn this study, perceived risk of dementia, family history, and discussion of prevention with a doctor were associated with likelihood to participate in a dementia prevention clinical trial, whereas sociodemographic factors including race/ethnicity were not. This suggests that campaigns focused on dementia risk and prevention may be effective tools to improve enrollment rates, regardless of target community.