Mapping Caregiver Needs to AI Chatbot Design: Strengths and Gaps in Mental Health Support for Alzheimer's and Dementia Caregivers
This addresses mental health challenges for family caregivers of Alzheimer's and dementia patients, offering incremental design insights for AI systems.
The study tackled the problem of supporting mental health for Alzheimer's and dementia caregivers by developing Carey, a GPT-4o-based chatbot, and found through interviews with 16 caregivers that it helps identify needs across six themes, including on-demand information and emotional support, but also reveals gaps in design.
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.