Qualitative Analysis of Daily Diary Response Data From Hispanic and Latino ADRD Family Caregivers

TL;DR

This study explores the daily experiences of Hispanic and Latino dementia caregivers through diary responses, revealing both positive and negative aspects of caregiving.

Contribution

The study provides preliminary qualitative insights into the unique mental health challenges and unmet needs of Hispanic and Latino dementia caregivers.

Findings

Caregivers reported emotional challenges and struggles managing dementia-related behaviors.

Positive daily experiences were also documented, highlighting the duality of caregiving.

Unmet needs in emotional distress and behavior management were identified as key areas for intervention.

Abstract

Hispanic and Latino (H&L) family caregivers of individuals living with dementia experience worse mental health outcomes than non-caregiver peers. The Nuestros Dias (Our Days) study examines multi-level factors influencing their daily and distal mental health outcomes using a multi-wave assessment. Eligible H&L caregivers were >18 years who provide unpaid care to a family member living with dementia (assisting with >1 Activity of Daily Living [ADL] or > 2 Instrumental ADLs). The purpose of this study was to examine preliminary themes emerging from participants’ qualitative responses to the open-ended question, “Did anything else happen today?”. This question was provided in each Wave 1 daily diary survey for 21 days. Participants included 11 caregivers who completed >1 open-ended response via REDCap. From the 231 daily diary surveys sent to the 11 participants, 88 qualitative responses were recorded. Two coders independently coded 88 responses, reaching consensus with a third coder. Participants had an average age of 55.2 years; most were female (n = 10), and half (n = 5) were of Mexican background. Most provided care to a parent (n = 7). Preliminary themes included emotional challenges of providing care (n = 10 participants), engagement/support from family/friends/formal caregivers (n = 5), engagement in wellness/self-care activities (n = 4), and struggles managing dementia-related behaviors (n = 4), as well as positive daily experiences (n = 6). Initial data show that H&L caregivers report both positive and negative caregiving experiences, with unmet needs in managing challenging behaviors and emotional distress. These findings provide early insights into the daily experiences of H&L caregivers that can inform culturally responsive interventions to support mental health.