The words community dwelling, Spanish preferring Hispanic/Latino adults use to talk about Alzheimer's disease and genetic testing: Implications for education and outreach

INTRODUCTION: Hispanic/Latino (H/L) adults are more likely than non-Hispanic white adults to have Alzheimer's disease (AD), but fewer than 1 in 5 H/L adults has APOE Ɛ4. H/L adults are underrepresented in AD research studies and trials, which use genetic data to stratify participants. Successful research programs representative of the entire U.S. population, including over 16 million Spanish speakers, require culturally appropriate educational materials about AD and genetic testing. We sought to learn the culturally salient words Spanish-preferring H/L adults use to talk about AD and genetic testing. METHODS: Participants were community-residing and self-identified as Spanish preferring H/L adults. Fourteen individuals completed freelisting interviews, which yielded lists featuring all the words that came to participants' minds about AD-related domains. We performed inductive thematic analysis and calculated theme frequency. RESULTS: Participants were aware of AD as a memory disorder due to advancing age and genes, but were unfamiliar with AD genetic testing. Participants suggested genetic testing was more useful for diagnosis than future risk prediction. They also suggested genetic testing of individuals with intact cognition and no AD family history had limited value. DISCUSSION: Findings suggested individuals are motivated by a technological imperative to participate in AD research, reflecting a responsibility to use genetic testing despite having limited knowledge about it. Interest among H/L adults in AD research could be leveraged to develop educational materials co-created by community members and researchers. Content about primary and secondary findings and the use of AD genetic results to inform a future-oriented disposition to health comprises a useful framework for AD outreach serving diverse populations.