Centering Caregivers and Addressing Social Determinants in Dementia Care Transitions: Community Health Worker-Led Model

Background and Purpose: Persons living with dementia (PLWDs) and their caregivers face high risks during hospital-to-home transitions, particularly due to fragmented services and under-addressed social determinants of health (SDoH). To build a caregiver-centered intervention, we adapted an existing community health worker (CHW)-led care transition model originally developed during the COVID-19 pandemic for all patients. Drawing on principles from implementation science and participatory co-design, we developed and piloted the CEDART (Connecting and Empowering Persons living with Dementia and Caregivers during Transition) intervention. This abstract reports on our design process and early implementation, with a focus on interdisciplinary collaboration between the community health worker (CHW), social workers, and inpatient care providers.

Methods: A multi-phase mixed-methods design, informed by user-involved co-design strategies, guided this study. In Phase 1, we conducted a caregiver needs assessment using surveys and interviews with 36 caregivers of hospitalized PLWDs, review of clinical data (n=22 dyads), and key informant interviews (n=5) with dementia care experts to develop an initial model. Phase 2 engaged stakeholders—hospital clinical care providers and care managers, community-based service providers, and caregivers—in key informant interviews (n=5) and multi-stakeholder advisory group sessions (n=11). Phase 3 involved a single-site, single-arm pilot test to assess feasibility, fidelity, and caregiver outcomes.

Results: Phase I study identified key challenges for PLWDs and caregivers: lack of preparation for discharge, emotional distress, gaps in community service navigation, and limited dementia knowledge. In response, the adapted CEDART model includes four domains of CHW support: (1) in-hospital communication support, (2) caregiver-centered discharge planning, (3) post-discharge service navigation, and (4) caregiver resilience and efficacy building. The CHW received enhanced training in dementia, Medicaid/Medicare eligibility, and caregiver empowerment. Interprofessional collaboration—especially with social workers—was essential for implementation. Preliminary pilot findings (n=21) show 87% meeting attendance and high caregiver acceptability rating (mean = 4.2/5). Early outcomes suggest increases in caregiver self-efficacy and reductions in caregiver burden.

Conclusions and Implications: This study demonstrates how translational research can reorient hospital discharge processes to better align with caregiver needs and community realities. Social work leadership was pivotal in co-designing and implementing the intervention, ensuring responsiveness to cultural and structural barriers. Findings underscore the value of CHW-social work collaboration in bridging gaps between evidence, practice, and policy—especially for populations underrepresented in transitional care innovation. As a model for community-engaged intervention development, CEDART offers actionable insights for advancing scalable transitional care systems that center caregivers in policy and practice. Future work will evaluate long-term outcomes and explore system-level integration strategies.