Enhancing participation of historically minoritized groups in Alzheimer disease and related dementias research: National Conference Report

Abstract

This paper reports on a Conference organized by the Washington University School of Medicine's (WUSM) Knight Alzheimer Disease Research Center (Knight ADRC), entitled "Enhancing Participation by Minoritized Groups in Alzheimer Disease and Related Dementia (ADRD) Research." It builds on recommendations from a 2018 Workshop. Representatives from all 37 federally funded ADRCs described strategies to enhance the recruitment and engagement of participants from historically minoritized groups. St. Louis community members attended and provided input. The Conference was guided by the 2015 National Institute on Aging (NIA) Health Disparities Research Framework, which delineates that "fundamental life-course factors such as race, ethnicity, and socioeconomic status interact with behavioral and biological characteristics to determine health and disease." The multiple ways of engaging participants described at the Conference provide guidance and strategies that can be adapted and utilized across the ADRC network and other research programs nationally to enhance inclusion of minoritized groups in ADRD research. Highlights Increasing representation in Alzheimer disease and related dementias (ADRD) research is a national priority. The National Conference described strategies to diversify participation in AD research. All Alzheimer's Disease Research Centers (ADRCs) were represented. Local community members attended and participated in breakout sessions. Many community-engaged strategies are being used to enhance recruitment and retention. Approaches can be adapted for local needs and utilized by ADRCs.

Keywords: Alzheimer disease; dementia; engagement; health disparities; health inequality; historically minoritized; outreach; racial and ethnic minorities; recruitment; research participation; retention; underrepresented groups.