Caregivers' attitudes toward their family members' participation in Alzheimer disease research: Implications for recruitment and retention

Current levels of participation in Alzheimer disease (AD) research are inadequate, particularly among nonwhites. This study was conducted to examine caregivers' attitudes toward their family members' participation in AD research. Six focus group interviews were conducted with 38 white and 12 African-American caregivers of participants enrolled in clinical research projects. Both white and African-American families participated in research to help their care recipients and future generations, receive support from the clinical and research staff, and obtain feedback about patient status and research results. Among white caregivers, primary barriers to participation in research included the potential for no direct benefit, problems with the procedures and tests involved, lack of time and resources, and difficulty accepting the diagnosis. Among African-American caregivers, primary barriers included general skepticism about the research process and firmly established attitudes about medical treatment and help seeking that serve as disincentives to research participation. To maximize the perceived benefits of research participation, potential participants should have access to regular personal contact with staff, information about health status changes in the care recipient, and the short-term and long-term results of the research studies in which they are participants. In addition, researchers should be sensitive to the concerns that may serve as barriers to participation, particularly among African Americans.