A NOVEL PARTICIPANT-CENTERED APPROACH TO RETENTION: THE WISCONSIN ADRC RENTENTION PROGRAM

Abstract

African Americans (AA) experience higher rates of Alzheimer's disease and other forms of dementia but are underrepresented in medical research. AA research participants are also not retained with the same success rate as other groups. In this abstract we describe a service-based retention program for AA participants. The program employs systematic and multifaceted approaches to retention. The Wisconsin Alzheimer's Disease Research Center (ADRC) surveyed AA participants at targeted Underrepresented Group (URG) participant events, through direct mail and with phone calls in order to design participant-centered retention programs. Creating service-based programs responsive to community needs has the additional benefit of increased participant investment. The top three survey requests resulted in one retention program in 2016 and two in 2017. In 2016, we offered a Finances for Elders workshop. In 2017, we offered computer skills and gentle exercise programs. Our strategies also involved scheduling convenient class times, free transportation, a meal and collaboration between community and university organizations. During the events, an outreach specialist is present for announcements, questions, and to continue building relationships, as well as a culturally competent environment. Over the past eight years the Wisconsin ADRC has seen significant growth in both AA recruitment and retention. In 2014, our 5-year cumulative retention for all URG participants was 64%. In 2016, our 7-year cumulative retention for all URG participants was 81% and for AA 72%. Our Center as a whole has a retention rate of 84%. AA participation in the computer skills program is currently 22 members from the ADRC and 2 members from the community. Limitations include room capacity and availability of computers. Our partners are The Urban League of Greater Madison and the UW Madison's IT Program. The exercise program already has a waiting list, although it will not begin until the end of March, 2017. The Wisconsin ADRC is successfully offering programs that lead to AA retention by focusing on participant centered requests, rather than exclusively targeting Alzheimer's disease related events. In total, the Center has improved AA participation and retention by employing this novel, multifocal approach.