African Americans and other racial and ethnic minority groups remain underrepresented in aging research, despite increased risk for developing Alzheimer's disease (AD). In light of the increasing racial and ethnic diversity of the aging population, the NIH has prioritized the recruitment and retention of individuals from marginalized populations in AD research programs, with the goal of increasing inclusivity of research participant pools, a critical aspect of effectively addressing future healthcare needs. Many studies indicate that African Americans are interested and willing to participate in research, but there are multiple complicating factors impeding full participation. The challenge for AD researchers is to develop research programs in which older African Americans are able to and feel comfortable participating. Successful programs address community-based and institutional barriers to recruitment, as well as prioritize increased collaboration, sensitivity, and responsiveness to the various cultural needs of participants from these groups. Previously, we designed a culturally-tailored service-based approach to improve the recruitment and retention of African Americans into the Wisconsin Alzheimer's Disease Research Center (ADRC). The long-term goal of this strategy is to increase engagement of African Americans in AD research by establishing a lasting community presence and positive, collaborative relationships through the provision of research-sponsored community programs. In the current proposal, using mixed methodology, we plan to 1) assess the impact of this strategy on overall attitudes towards research participation, and 2) conduct structured interviews to collect qualitative data identifying additional factors and key elements influencing research participation. Increasing the generalizability of findings through building more inclusive AD research participant pools is the first step in achieving the ultimate goal of eliminating health disparities and providing the highest level of care to all. Information gained will used to be used to refine the current program and support the establishment of other service-based recruitment and retention programs.
The proposed study assesses research perceptions and the impact of a service-based model of recruitment on the participation of African Americans adults 45 and older. Understanding key factors supporting participation is critical to increasing the inclusivity of dementia research, and achieving equity in prevention and treatment.
