A Taxonomy of Mental Health and Technology Needs for Alzheimer's and Dementia Caregivers

Family members caring for individuals with Alzheimer's disease and related dementias (AD/ADRD) provide the foundation of long-term care worldwide. In 2023, more than 11 million U.S. family and friends contributed 18 billion hours of unpaid care, often at the cost of their own physical and mental health. These informal caregivers -- also referred as the "invisible second patients" -- experience elevated rates of mental health problems. Yet research commonly reduces their complex psychosocial experiences to a single construct of caregiver burden, obscuring which specific needs are unmet or effectively supported. At the same time, digital and AI-enabled technologies are rapidly expanding, from smartphone apps and videoconferencing to sensor platforms and AI chatbots. However, the absence of shared frameworks across medicine, psychology, and technology research limits cumulative progress. This study introduces a Caregiver Mental Health and Technology Taxonomy that systematically links AD/ADRD caregiver needs with corresponding classes of technology-based interventions. Drawing from an interdisciplinary literature review and two qualitative studies with caregivers, the taxonomy identifies mismatches between caregiver priorities and existing technological support, highlights under-served domains such as relational strain and compassion fatigue, and proposes design directions for adaptive, responsive systems. The framework offers a shared vocabulary to guide clinicians, researchers, and technology designers in developing more person-centered and clinically grounded innovation in dementia care.

When AI Says "I have been in similar situations": Synthetic Lived Experience in Peer-Like Caregiver Support

Caregivers often turn to online communities for informational and emotional support. In these spaces, peer supporters frequently draw on personal narratives to respond to emotionally complex caregiving situations. As LLMs are increasingly designed as peer-like sources of support, they introduce a critical tension: AI can provide immediate, private, and nonjudgmental support, but it cannot authentically possess the lived experiences that make human peer support meaningful. Yet, when prompted to sound peer-like, LLMs may generate language that implies lived experience. This creates a synthetic lived experience paradox: the same experiential language that may make AI support feel warm, relatable, and peer-like can also falsely position the system as someone with lived experience. We examine this paradox in the context of family caregivers of people living with Alzheimer's Disease and Related Dementias (ADRD). Drawing on caregiver support exchanges from online communities and prompted peer-like responses from three LLMs -- LLaMA, GPT-4o-mini, and MedGemma -- we analyze how human peers use personal narratives and how AI incorporates similar narrative forms. Psycholinguistic analysis shows that peer responses used significantly more first-person and past-focused language than peer-like AI responses. Qualitatively, we identify seven types of personal narratives in human peer support and show that AI often captures their emotional work, but can fabricate experiential grounding. These findings reveal a narrative authenticity gap: peer-like AI can generate synthetic lived experience without the real experience that makes peer support meaningful. We argue that caregiver-support AI systems need mechanisms to distinguish supportive peer-like framing from fabricated lived experience, ensuring that models can offer warmth and validation without falsely positioning themselves as experiential peers.

Inform, Coach, Relate, Listen: Auditing LLM Caregiving Support Roles

Language models are increasingly being deployed for conversational support in informal caregiving contexts, where interactions often extend beyond information-seeking: caregivers seek emotional reassurance, guidance, and help, while navigating uncertain, relationally complex care decisions. Yet most safety evaluations assess model behavior under generic prompts, leaving a critical question unexamined: does a model's safety profile change with its support role? We study this by operationalizing four expert-reviewed support roles grounded in social support theory: Inform, Coach, Relate, and Listen, and comparing them against two baseline controls: a basic prompting condition and a retrieval-augmented generation (RAG) condition. We evaluate across three language models (GPT-4o-mini, Llama-3.1-8B-Instruct, and MedGemma-1.5-4b-it) on 5,000 real-world queries from online Alzheimer's Disease and Related Dementias (ADRD) communities. We find that the LLM's support role systematically shapes both the prevalence and composition of interactional risks. Furthermore, a human evaluation study reveals a perceived quality--safety tension: more directive, information-oriented roles are rated as more helpful and trustworthy despite exhibiting elevated interactional risk profiles. We release ~90,000 support role-conditioned model responses with risk annotations as an ecologically grounded resource for research on safer LLM-mediated conversational support.

RubRIX: Rubric-Driven Risk Mitigation in Caregiver-AI Interactions

Caregivers seeking AI-mediated support express complex needs -- information-seeking, emotional validation, and distress cues -- that warrant careful evaluation of response safety and appropriateness. Existing AI evaluation frameworks, primarily focused on general risks (toxicity, hallucinations, policy violations, etc), may not adequately capture the nuanced risks of LLM-responses in caregiving-contexts. We introduce RubRIX (Rubric-based Risk Index), a theory-driven, clinician-validated framework for evaluating risks in LLM caregiving responses. Grounded in the Elements of an Ethic of Care, RubRIX operationalizes five empirically-derived risk dimensions: Inattention, Bias & Stigma, Information Inaccuracy, Uncritical Affirmation, and Epistemic Arrogance. We evaluate six state-of-the-art LLMs on over 20,000 caregiver queries from Reddit and ALZConnected. Rubric-guided refinement consistently reduced risk-components by 45-98% after one iteration across models. This work contributes a methodological approach for developing domain-sensitive, user-centered evaluation frameworks for high-burden contexts. Our findings highlight the importance of domain-sensitive, interactional risk evaluation for the responsible deployment of LLMs in caregiving support contexts. We release benchmark datasets to enable future research on contextual risk evaluation in AI-mediated support.

Mapping Caregiver Needs to AI Chatbot Design: Strengths and Gaps in Mental Health Support for Alzheimer's and Dementia Caregivers

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.

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

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.