Care & Caregiving: Meeting to establish a research agenda (Milestone 13.A)
Timeline Start - End2016 - 2020
Research Implementation AreaResearch 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.
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.
- PAR-19-373: Research on biopsychosocial factors of social connectedness and isolation on health, wellbeing, illness, and recovery
- NOT-AG-22-028 RFI: Invitation for Input on the 2023 National Research Summit on Care, Services, and Supports for Persons Living with Dementia and their Caregivers/Care Partners
Research Programs and Resources
- Examples of funded projects
- National Research Summit on Care, Services and Supports for Persons with Dementia and Their Caregivers
- Gaps in the Dementia Care Workforce: Research Update and Data Needs
- Expert Meeting on the Demography of the Older Residential Care Population: Research Questions and Data Gaps
- Decadal Survey of Behavioral and Social Science Research on Alzheimer's Disease and Alzheimer's Disease-Related Dementias
- Summit Virtual Meeting Series: 2020 National Research Summit on Care, Services, and Supports for Persons with Dementia and Their Caregivers
- 2015 AD Summit: 4K,4B, 4J, and 5D
- 2017 Dementia Care Summit: 3.1, 3.3, 3.4; 7.1, 7.3, 7.4, 7.5 and 7.6