Balancing Caregiving and Self-Care: Exploring Mental Health Needs of Alzheimer's and Dementia Caregivers

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.