In the search for ways to slow or prevent Alzheimer’s disease, one significant barrier is recruitment and retention of research participants — yet those who do join studies often develop ongoing connections to research and become frequent participants. While barriers to participation are well documented, less is known about the motivations for individuals to participate in Alzheimer’s disease clinical research. A group of investigators led by Dr. Shani Bardach of the Graduate Center for Gerontology at the University of Kentucky College of Public Health and the Sanders-Brown Center on Aging recently undertook a study to explore what motivates individuals to engage with and stay involved in Alzheimer’s disease research. Their results appear in the current issue of The Gerontologist.
The researchers interviewed individuals who had participated in multiple Alzheimer’s disease-related clinical trials — or their study partners — about their decisions to engage and remain in research. They found that while many participants were initially motivated by family history or knowing someone with Alzheimer’s disease, others had no personal exposure. Individuals in prevention studies were generally proactive and viewed research as a constructive way to address memory concerns.
While several individuals acknowledged personal benefits of research participation, most indicated an understanding of the importance of research and cited motivation to help others in the future — frequently referencing a sense of social responsibility or moral obligation to help. The findings suggest that research recruitment should highlight the value of research, and help illuminate how participation may contribute to well-being of future generations.Tags: Friday Letter Submission, Publish on August 02