Use of Live Theater to Increase Minority Participation in Alzheimer Disease Research

Abstract

Recruitment and retention of African Americans into Alzheimer disease (AD) research studies poses challenges owing to long-standing socio-economic and cultural differences, pragmatic difficulties in reaching the African American population, and a legacy of distrust of medical research. In this study, we report on our efforts to use live theater to educate African Americans about AD research and to increase minority participation in it. We describe our experiences at the University Memory and Aging Center (Cleveland, OH) in commissioning, writing, and producing several theater productions focused on themes related to African Americans and their experiences dealing with family members with AD. Analysis of recruitment data, gathered before and after one of our productions, indicated that minority enrollment into our Center's Research Registry increased after the play. Survey data, gathered before and after production of a different play, indicated that viewing this piece increased knowledge about: (1) the symptoms of AD; (2) the fact that memory loss is not a part of normal aging; and (3) the greater prevalence of AD among African Americans. Also, after viewing this production, more audience members: (1) reported knowing how to become involved in research; (2) felt comfortable involving family members in research; and (3) would recommend research to others. We conclude that live theater that dramatizes the experiences of a family living with a person with AD can increase knowledge about AD, improve attitudes about taking part in research, and lead to greater participation in AD research studies. An explanatory model is offered to account for our findings.