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Caregiver/Care Partner Research


The Dementia Caregiver/Care Partner research portfolio is broad and encompasses topics ranging from the demography of caregiving, economic impacts of caregiving, promoting health and wellbeing in care partners, measures and tool development, non-pharmacological intervention development for care partners or care partner-PLWD dyads, and care partner management of communication, decision making, and care planning. Research is encouraged that focuses on the unique needs and experiences of care partners from diverse backgrounds as well as the special challenges associated with caregiving for individuals in vulnerable groups, including those at risk for elder mistreatment and those living alone with dementia in the community. The AHRQ review, Care Interventions for People Living With Dementia and Their Caregivers, and the accompanying NASEM consensus study report, Meeting the Challenge of Caring for Persons Living With Dementia and Their Care Partners and Caregivers, found opportunities to improve and strengthen the care partner research base. BSR supports the development of dementia caregiving and caregiver support interventions aligned with the NIH Stage Model. Early Stage projects are supported through pilot programs at dedicated AD/ADRD Roybal Centers and pilot interventions for embedded pragmatic trials are supported through the NIA IMPACT Collaboratory.

The NIA-funded National Study of Caregiving (NSOC) is a data resource for caregiving research. NSOC is a longitudinal study of care partners of older adults, both with and without Alzheimer’s disease, who participated in the National Health and Aging Trends Study (NHATS). Care partners are interviewed about their caregiving experience, including intensity and duration of caregiving, care activities, positive and negative aspects, services and supports, health and well-being, and caregiving effects on employment, income, and participation in activities. Linking NSOC data with information from NHATS makes available data from both the care recipient and care partner perspectives. This data infrastructure contributes to fulfilling AD Milestone 13C and provides new opportunities for researchers to gain a better understanding of trends in late life functioning of both older adults and care partners.

Related AD+ADRD Research Implementation Milestones: 11A, 13A, 13B, 13C, 13D, 13E, 13F, 13J

Active Projects as of September 2021: Caregiver/care partner research

Research Programs and Contacts

Program Contact

Relevant Area(s)

Elena Fazio

  • Demography of unpaid/family caregiving
  • Measurement and data needs for care partner research
  • Economic and labor force impact of caregiving
  • Caregiving interventions in home and community-based settings

Melissa Gerald

  • Triadic interactions with clinicians, PLWD, and care partners
  • Ethical implications of care partners in care teams for PLWD

Amelia Karraker

  • Measures and methods for care partner research
  • Demography of caregiving

Liz Necka

  • Interpersonal relationships and relational factors within dyads of PLWD and their care partners
  • Dyadic interventions for family caregivers and PLWD

Lisa Onken

  • Caregiving interventions

John W.R. Phillips

  • Economic and labor force impact of caregiving

Funding Opportunities

BSR is accepting grant applications to a number of funding opportunities related to dementia caregiver/care partner research. In addition, any AD/ADRD-focused application can be submitted to NIA’s parent AD/ADRD R01 and R21 program announcements. Notices of Special Interest associated with these parent NOFOs specify high priority behavioral and social research topics. Please see below for current funding opportunities. For a list of all of BSR’s active funding opportunities, visit our funding opportunities and applicant resources page.

Research Investments

BSR has supported research projects focused on caregiver/care partner research through targeted notices of funding opportunity. Although some of these funding opportunities are no longer active, the topics outlined in the announcements remain priority research areas for BSR. Applications on these topics should be submitted through a relevant active NOFO or through NIA’s parent AD/ADRD R01 and R21 program announcements.

Related Workshops & Reports

Decadal Survey of Behavioral and Social Science Research on Alzheimer’s Disease and Alzheimer’s Disease-Related Dementias, August 2021

NASEM Care Interventions for Individuals with Dementia and Their Caregivers, February 2021

AHRQ Evidence Review: Care Interventions for People Living With Dementia and Their Caregivers, August 31, 2020

2020 National Research Summit on Care, Services, and Supports for Persons with Dementia and their Caregivers, Summer 2020

Expert Meeting on Empathy and Compassion, September 16, 2019 - September 17, 2019

Improving Patient Outcomes through Effective Caregiver-Clinician Communication and Relationships Expert Meeting, May 17, 2018 - May 18, 2018

State of the Science for Pragmatic Trials of Non-Pharmacological Interventions to Improve Outcomes Among Persons with Dementia and Their Caregivers, December 01, 2017

Innovating the Next Generation of Dementia and Alzheimer's Disease Care Interventions: Addressing the Needs of Persons Living with Dementia, Caregivers, and Care Providers (PDF, 1.5M), July 31-August 1, 2017

2017 National Research Summit on Care, Services, and Supports for Persons with Dementia and their Caregivers, October 16-18, 2017

Return to BSR’s AD/ADRD Main Page

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