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Support research on comprehensive AD/ADRD care models, which are dementia-focused care management models that integrate clinical care, palliative care, and other services and supports (e.g., home and community-based services, social services) that aim to improve quality of life for persons living with dementia and reduce strain on their unpaid care partners. Research should be conducted in a variety of contexts, points along the dementia care continuum, and patient populations, including those with minimal informal care support and those in health disparities populations and underserved areas.
2029 RFA-AG-25-002: Consortium for Palliative Care Research Across the Lifespan (U54 Clinical Trial Optional) 13.T In Progress Support research on comprehensive AD/ADRD care models that aim to improve quality of life for persons living with dementia and reduce strain on their unpaid care partners. DN Relevant 2023 Dementia Care Summit G&Os: 3.1, 3.2, 3.3 Research on Care and Caregiver Support 2024
Support at least 6 research projects or activities, such as projects that:
- Enhance the effectiveness and implementation of comprehensive AD/ADRD care models by determining the intervention’s key components using innovative research designs where appropriate (e.g., multiphase optimization strategy (MOST), factorial experimental design).
- Determine optimal features of comprehensive AD/ADRD care models that address gaps in the dissemination and implementation knowledge base, such as parameters of interest to health systems and payers, including program cost, dosage, settings, and staffing models.
- Compare efficacy and effectiveness of comprehensive AD/ADRD care models implemented in different health systems, contexts, and/or populations.
Summary of Key Accomplishments
In 2018, the Patient-Centered Outcomes Research Institute and the National Institute on Aging (NIA) funded the Dementia Care Study (D-CARE), a 4-site randomized clinical trial comparing outcomes of health system-based, community-based, and usual dementia care. To build on these findings, NIA launched the D-CARE End of Life Study in 2024 to examine how dementia care management affects end-of-life care for community-dwelling persons living with dementia (PLWD). This study will help to generate critical insights into care preferences, unmet needs near death, and healthcare use in the final 6 months of life.
In 2025, NIA launched the Consortium for Palliative Care Research Across the Lifespan in collaboration with five other NIH Institutes, which will contribute to research and scientific workforce development related to palliative care models for persons living with AD/ADRD as well as other serious illnesses.
The key accomplishments summary is current as of September 2025.