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Care & Caregiving: Meeting to establish a research agenda (Milestone 13.A)


Timeline Start - End

2016 - 2020

Research Implementation Area

Research on Care and Caregiver Support

Convene an exploratory expert meeting to delineate and prioritize an interdisciplinary research agenda focused on assessing the impact of informal and formal caregiving across the full care continuum (to include primary care, home health care, adult day care, nursing home, assisted living, hospice, etc.) on individuals, families, and society, and to inform design of new care delivery systems for individuals with dementia.

Success Criteria

  • Definition and characterization of informal and formal caregiving, the domains of needs of caregivers and care recipients across the care continuum, the key social structural variables which contribute to variance in caregiving burden, and factors that characterize care delivery and care coordination models that reduce burden on caregivers and care recipients.

  • Recommendations developed for research priorities on the impact of caregiving on caregivers’ psychological and physical health, workforce participation and financial security.

  • Recommendations developed for research programs that can inform development of new care models including for those living alone.

Summary of Key Accomplishments

NIA has supported scientific meetings, workshops, summits, and a NASEM Decadal Survey of Behavioral and Social Science Research on AD/ADRD (decadal surveys are a formal way of engaging members of a scholarly community, including people living with AD and their care partners, to identify lines of research with the greatest potential in this area over a 10-year period) that have identified multiple research gaps and opportunities on informal and formal caregiving, impacts of caregiving on caregiver health and wellbeing, and on care models (e.g., the 2017 and 2020 Dementia Care and Caregiving Summits, the NASEM Decadal Survey).

The key accomplishments summary is current as of March 2022. 

Accomplishments/Implementation Activities

Funding Initiatives

Research Programs and Resources

Research Highlights

Relevant Recommendations

Related Milestones

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