The Daily Experiences of Hispanic and Latinx Dementia Caregivers Study: Protocol for a Fully Remote Daily Diary Observational Cohort Study

Abstract

Background The Hispanic and Latinx community is disproportionately affected by Alzheimer disease and related dementias (ADRDs). In the United States, approximately 8.5 million caregivers of individuals with ADRDs identify as Hispanic and Latinx people, and caregiving-related stress and burden place caregivers at elevated risk for poor mental health outcomes, as well as loneliness and social isolation. To date, there is limited knowledge about the daily stress experiences of Hispanic and Latinx caregivers. Given this knowledge gap, it is critical to examine how personal, cultural, and contextual factors influence daily stress, mental health, and resilience over time among Hispanic and Latinx ADRD caregivers. Objective The goal of this protocol report is to present the rationale, methodology, planned analytical strategy, progress completed to date, and implications of future findings for “Nuestros Días” (Spanish for “our days”), a fully remote daily diary (DD), observational cohort study examining the day-to-day experiences of Hispanic and Latinx ADRD caregivers. Methods The study will recruit a cohort of up to 500 Hispanic and Latinx caregivers of individuals living with ADRD. Participants will complete measures assessing contextual, individual-level, and cultural factors at 3 intervals (enrollment, 6 months, and 12 months). Each of the timepoints will be followed by 21 days of DD surveys to report on daily stress, stress moderators, and mental health variables. Results Data collection began in March 2023 and is projected to end in December 2026. As of March 2024, we have enrolled 60 caregivers in the Nuestros Días study, 78.9% (n=15) of whom are Spanish speakers. The current completion rate for DD surveys is 79.4%, averaging approximately 18 surveys out of 21 completed. We expect to enroll 10 to 15 participants per month moving forward to achieve our enrollment goal. Conclusions Results from this study will identify which Hispanic and Latinx ADRD caregivers, and under what circumstances, appear to be at the greatest risk of experiencing poor mental health outcomes over time. This study represents a critical step forward in providing key guidance to develop effective, culturally sensitive interventions to support the health and well-being of Hispanic and Latinx ADRD caregivers, a historically underrepresented and underserved population in aging and caregiving research. International Registered Report Identifier (IRRID) DERR1-10.2196/55216