How do researchers identify and recruit dementia caregivers? A scoping review

Background and objectives: Studies involving dementia caregivers are essential to transform care and inform new policies. However, identifying and recruiting this population for research is an ongoing challenge. This scoping review aimed to capture the current methodology for identifying and recruiting dementia caregivers in clinical studies. A focus was placed on methods for underrepresented populations and pragmatic trials to guide pragmatic and equitable clinical studies.

Research design and methods: Researchers conducted a literature search using PubMed, PsycINFO, EMBASE and Web of Science databases. Studies conducted in the United States that enrolled at least 10 caregivers and were published within the last 10 years (2013-2023) were included.

Results: Overall, 148 articles were included in the review. The most common method for identification was community outreach, and paper advertisements for recruitment. Caregivers were most often approached in community settings, formal organizations, and/or dementia research centers. Most enrolled caregivers were female, White, and spouses of persons living with dementia. Race and ethnicity were underreported, as were the target recruitment goals. Limited studies were self-reported as pragmatic. Additionally, limited studies reported adaptations for methods of identification and recruitment in underrepresented populations.

Discussion and implications: We identified gaps in current practices for the identification and recruitment of dementia caregivers. Future identification and recruitment methodologies should be tailored to the intervention's intent, health care setting, and the research questions that need to be answered, while balancing available resources. Additionally, transparent reporting of identification and recruitment procedures, target recruitment goals, and comprehensive demographic data is warranted.