The dementia care study (D-CARE): Recruitment strategies and demographic characteristics of participants in a pragmatic randomized trial of dementia care

Abstract

Introduction: Pragmatic research studies that include diverse dyads of persons living with dementia (PLWD) and their family caregivers are rare.

Methods: Community-dwelling dyads were recruited for a pragmatic clinical trial evaluating three approaches to dementia care. Four clinical trial sites used shared and site-specific recruitment strategies to enroll health system patients.

Results: Electronic health record (EHR) queries of patients with a diagnosis of dementia and engagement of their clinicians were the main recruitment strategies. A total of 2176 dyads were enrolled, with 80% recruited after the onset of the pandemic. PLWD had a mean age of 80.6 years (SD 8.5), 58.4% were women, and 8.8% were Hispanic/Latino, and 11.9% were Black/African American. Caregivers were mostly children of the PLWD (46.5%) or spouses/partners (45.2%), 75.8% were women, 9.4% were Hispanic/Latino, and 11.6% were Black/African American.

Discussion: Health systems can successfully enroll diverse dyads in a pragmatic clinical trial.

Keywords: caregivers; dementia care; pragmatic clinical trials; recruitment.

FIGURE 1

Overall screening and enrollment flowchart legend. *Ineligible mainly because of exclusions not captured on EPIC such as deaths, nursing home residence; **refusal mainly by caregivers; ° unable to complete baseline mainly because of inability to contact by telephone despite initial agreement to participate. For more details see Table 3.