Recruitment of a diverse research cohort in a large metropolitan area for dementia intervention studies

Abstract

The human and financial costs of dementia care are growing exponentially. Over five and a half million older Americans are estimated to be living with Alzheimer's disease and related dementia (ADRD). By 2050, this is expected to increase to over 13 million, and persons of color are at the highest risk. Considerable funds have been committed to research to prevent, treat, and care for persons at risk for ADRD. However, enrollment of research participants, particularly those coming from diverse backgrounds, is a perennial challenge and has serious implications. This paper quantitatively details the results of a community-based multi-modal outreach effort to recruit a racially diverse sample for non-pharmacological dementia intervention, including referral and participant sources and yield, total recruitment costs and cost per enrolled dyad, and a qualitative description of lessons learned, with particular attention to the recruitment of Black participants. The largest number of referrals and referrals converting to study participants, for both Black and White persons, were from a Maryland Department of Health mailing to Medicaid recipients. There was an important difference in the most effective strategies, proportionally, for white and Black participants. The MDH mailing had the highest yield for our Black referrals and participants, while professional referrals had the highest yield for white referrals and participants. The total estimated cost of recruitment was $101,058, or $156.19 per enrolled dyad. Ultimately 646 persons with dementia and care partner dyads were enrolled, 323 (50%) of whom were Black.