JMIR Publications

ABSTRACT

Background:

The Hispanic and Latinx (H&L) community is disproportionately affected by Alzheimer’s disease and related dementias (ADRDs). In the United States, approximately 8.5 million caregivers of individuals with ADRDs identify as H&L, 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 H&L caregivers. Given this gap in knowledge, it is critical to examine how personal, cultural, and contextual factors influence daily stress, mental health and resilience over time among H&L 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” (in English “Our Days”), a fully remote daily diary, observational cohort study examining the day-to-day experiences of H&L ADRD caregivers.

Methods:

The study will recruit a cohort of up to 500 H&L caregivers of individuals living with ADRD. Participants will complete measures assessing contextual, individual-level, and cultural factors at three intervals (enrollment, 6 months, and 12 months). Each of the timepoints will be followed by 21 days of daily diary 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 October 2023, we have enrolled 19 caregivers in the Nuestros días study, 78.9% of whom are Spanish speakers. The current completion rate for daily diary surveys is 79.4%, averaging about 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 H&L ADRD caregivers, and under what circumstances, appear to be at 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 H&L ADRD caregivers, a historically underrepresented and underserved population in aging and caregiving research.