Alzheimer Disease Worries, Fears, and Stigma and Their Relationship to Genetic and Interventional Research Engagement

Background: Alzheimer disease (AD) research increasingly requires healthy individuals willing to undergo genetic testing. Objective: This study seeks to: (1) describe older adults' beliefs about AD genetic testing, worry about AD, and fear of AD stigma, and (2) explore how these constructs relate to research participation. Methods: Surveys were sent to participants active in AD-observational research and those that were not. Three measures of research participation were explored: (1) being a current research participant, (2) self-report of clinical trial participation, and (3) expressing genetic registry interest. Results: The majority of the 502 respondents perceived greater benefit than the risk associated with AD genetic testing. AD worry and perceptions of AD stigma were low. Higher levels of AD worry and lower perceptions of AD stigma were associated with being a current AD research volunteer. AD worry and stigma were unrelated to clinical trial participation or genetic registry interest; these research participation measures were associated with AD genetic testing benefit. Conclusions: Beliefs about AD genetic testing, AD worry, and AD stigma are related to research participation, but relationships vary based on the research participation investigated. Future work should identify how these findings can inform outreach and recruitment efforts.