Balancing Caregiving and Self-Care: Exploring Mental Health Needs of Alzheimer's and Dementia Caregivers
Jiayue Melissa Shi, Keran Wang, Dong Whi Yoo, Ravi Karkar, Koustuv Saha
TL;DR
This study investigates how AD/ADRD caregivers’ mental health needs unfold across three stages of the caregiving journey, using 25 semi-structured interviews and reflexive thematic analysis to map causes, effects, and evolving coping practices. It finds that financial strain, social isolation, time pressure, and relational tensions drive distress, while external support and self-care practices mitigate burden, with technology playing a mixed yet pivotal role. The authors propose a stage-sensitive design framework for mental wellbeing technologies, highlighting cross-cutting barriers—cost, usability, credibility, and the need for human-centered, emotionally aware tools—and discuss policy and community strategies to improve access to support. The findings contribute to social support and ethics-of-care theory while offering concrete guidance for developers and policymakers to create adaptive, caregiver-centered sociotechnical solutions that evolve with caregiving needs and contexts.
Abstract
Alzheimer's Disease and Related Dementias (AD/ADRD) are progressive neurodegenerative conditions that impair memory, thought processes, and functioning. Family caregivers of individuals with AD/ADRD face significant mental health challenges due to long-term caregiving responsibilities. Yet, current support systems often overlook the evolving nature of their mental wellbeing needs. Our study examines caregivers' mental wellbeing concerns, focusing on the practices they adopt to manage the burden of caregiving and the technologies they use for support. Through semi-structured interviews with 25 family caregivers of individuals with AD/ADRD, we identified the key causes and effects of mental health challenges, and developed a temporal mapping of how caregivers' mental wellbeing evolves across three distinct stages of the caregiving journey. Additionally, our participants shared insights into improvements for existing mental health technologies, emphasizing the need for accessible, scalable, and personalized solutions that adapt to caregivers' changing needs over time. These findings offer a foundation for designing dynamic, stage-sensitive interventions that holistically support caregivers' mental wellbeing, benefiting both caregivers and care recipients.