Earning the Trust of African American Communities to Increase Representation in Dementia Research

Abstract

Black/African American populations are un­derrepresented as participants in dementia research. A major barrier to participation of African American older adults in dementia research is a tendency to distrust research institutions owing to both historical and contemporary racism. Building on the Ford framework, the objective of our study was to examine factors that influence participa­tion in dementia research among African American older adults and caregivers, with an emphasis on understanding factors related to trust. Data were collected during January 2019 and March 2020 from 10 focus groups with African American older adults (n=91), 5 focus groups with caregiv­ers (n=44), and interviews with adminis­trators of community-based organizations (n=11), and meetings with our Community Advisory Board. Inductive/deductive con­tent analysis was used to identify themes. The results identified an overall tension be­tween distrust of researchers and a compel­ling desire to engage in dementia research. This overarching theme was supported by six themes that provided insights about the multiple layers of distrust, as well as expectations about the appropriate conduct of researchers and academic institutions. Strong commitment to the community was identified as a priority. The findings suggest that a paradigm shift is needed to increase the representation of African Americans in dementia research. In this new paradigm, earning the trust of African American com­munities becomes a systemic endeavor, with academic, state, and national institutions deeply committed to earning the trust of African American communities and guiding researchers in this endeavor. The findings also generated actionable recommendations to help improve representation of African American older adults in dementia research.Ethn Dis. 2020;30(Suppl 2):719-734; doi:10.18865/ed.30.S2.719