Where are caregivers in the clinical trial? Evaluation of caregiver responsibilities in Alzheimer's disease and related dementias clinical trials

Abstract

INTRODUCTION: Family caregivers of persons with Alzheimer's disease and related dementias (ADRD) have significant responsibilities within health care. They may identify relevant clinical trials and support decision-making about their relative's participation. The objectives of this study were to (a) evaluate the responsibilities of caregivers related to their relative's participation in ADRD clinical trials and (b) examine how these responsibilities are communicated on clinicaltrials.gov. METHODS: We reviewed ADRD clinical trials completed between 1990 and 2021 using clinicaltrials.gov. RESULTS: Less than half of clinical trial study information pages included caregiver responsibilities. Nine caregiver responsibilities were provided among those with information (e.g., giving consent, caregiver training and education, monitoring patient's response to intervention, communicating with study team). DISCUSSION: ADRD clinical trial study information pages should consistently include caregiver responsibilities to help caregivers better prepare for trial responsibilities. This enhanced engagement with caregivers could also facilitate recruitment and retention, including participants from diverse communities. Highlights: Alzheimer's disease and related dementias (ADRD) clinical trial study information does not consistently include caregiver responsibilities. Caregiver responsibilities in clinical trials span communication, monitoring, and transportation. Robust information provision to caregivers could support participant recruitment and retention. Meaningfully engaging caregivers could support recruitment of diverse participants.