Abstract:Family caregivers of individuals with Alzheimer's Disease and Related Dementia (AD/ADRD) face significant emotional and logistical challenges that place them at heightened risk for stress, anxiety, and depression. Although recent advances in generative AI -- particularly large language models (LLMs) -- offer new opportunities to support mental health, little is known about how caregivers perceive and engage with such technologies. To address this gap, we developed Carey, a GPT-4o-based chatbot designed to provide informational and emotional support to AD/ADRD caregivers. Using Carey as a technology probe, we conducted semi-structured interviews with 16 family caregivers following scenario-driven interactions grounded in common caregiving stressors. Through inductive coding and reflexive thematic analysis, we surface a systemic understanding of caregiver needs and expectations across six themes -- on-demand information access, emotional support, safe space for disclosure, crisis management, personalization, and data privacy. For each of these themes, we also identified the nuanced tensions in the caregivers' desires and concerns. We present a mapping of caregiver needs, AI chatbot's strengths, gaps, and design recommendations. Our findings offer theoretical and practical insights to inform the design of proactive, trustworthy, and caregiver-centered AI systems that better support the evolving mental health needs of AD/ADRD 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.