Why They Stay: Understanding Research Participant Retention in Studies of Aging, Cognitive Impairment and Dementia.

BACKGROUND: Retaining participants in longitudinal research in aging and Alzheimer's disease remains a significant challenge. "Study partners" are often required to insure participation and accuracy of information because cognitive impairment may interfere with accurate reporting. The purpose of the present report was to identify attitudes and reasons for continued participation in observational research. METHODS: 53 individuals (33 participants and 20 study partners) who were participating in the longitudinal cohort at the Mount Sinai Alzheimer's Disease Research Center were available for this survey. They were asked a single open-ended question about why they continued in our study. Seven categories of answers (e.g., Altruism, Value relationship with staff, and Concern about health) were identified and frequency of endorsement was summarized for participants and study partners separately. RESULTS: There were 82 responses from the 53 individuals. Forty five percent of the participants and 55% of the study partners identified altruism as one reason they participate in research over time, and 75% of study partners and 30% of participants mentioned valuing the relationship with staff as a reason they stayed in research. CONCLUSIONS: This data suggests that retention efforts should be directed toward fostering strong relationships between research staff and study participants and reinforcing the opportunity to contribute to others, which fosters a sense of altruism.