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Establish data infrastructure for the study of dementia caregiving.
2021 RFA-AG-20-033: NIA Behavioral and Social Research LEaders in Alzheimers Disease and Its Related Dementias (NIA BSR LEADR DP1) RFA-AG-20-002: Centers on the Demography and Economics of Alzheimer's Disease and Alzheimer's Related Dementias (P30) RFA-AG-20-001: Centers on the Demography and Economics of Aging (P30 Clinical Trial Optional) RFA-AG-20-016: Lucidity in Dementia (R21 Clinical Trial Optional) RFA-AG-20-017: Lucidity in Dementia (R21/R33 Clinical Trial Optional) NOT-AG-21-047: Behavioral and Social Science Priority Areas in Dementia Care Partner/Caregiver Research RFA-AG-22-012: High-Priority Behavioral and Social Research Networks in Alzheimer’s Disease and Alzheimer’s Disease-Related Dementias RFA-AG-23-022: Measures and Methods for Research on Family Caregivers for People Living with Alzheimer’s Disease and Related Dementias (AD/ADRD) (R01 Clinical Trial Not Allowed) RFA-AG-23-023: Measures and Methods for Research on Family Caregivers for People Living with Alzheimer’s Disease and Related Dementias (AD/ADRD) (R21 Clinical Trial Not Allowed) RFA-AG-24-033: Dementia Care Coordination Research Center (U54 Clinical Trial Not Allowed) RFA-AG-24-037: Limited Competition: National Health and Aging Trends Study (NHATS) and National Study of Caregiving (NSOC) (U01 Clinical Trial Not Allowed) (Reissue of RFA-AG-19-019) 13.C Achieved DN 2015 AD Summit: 4B, 4E, and 4F 2017 Dementia Care Summit: 3.1, 3.3 and 3.4 Research on Care and Caregiver Support National Study of Caregiving (NSOC) Examples of funded awards Research Network for Alzheimer’s Disease Home and Community Based Services Multiple NHATS/NSOC data products released for researcher use in 2023, including NSOC IV (Round 12) Final Data released 12/13/2023; NHATS (Round 12) Final Data released 12/12/2023; NHATS Long-Term Care Market Measures released 9/7/2023
Identification of existing cohorts of nationally representative and cross-national samples and determination of the need for data collection in new cohorts.
Establishment of standard protocols for harmonizable survey data collection and data infrastructure.
Supplement existing national panel studies to collect data on formal and informal caregiving.
Support archiving of data from population-based and intervention studies with appropriate content related to informal and formal caregiving.
Summary of Key Accomplishments
The NIA-funded National Study of Caregiving (NSOC) establishes data infrastructure for the study of dementia caregiving. 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). The instruments and data from these linked studies are available to researchers from the NHATS/NSOC website. In 2023, several new data products were released, and data user workshops were held for the benefit of the broader researcher community. Future activities will include encouraging broader use of these data and protocols and continuing to support work to build caregiving data infrastructure. In 2024, NIA intends to establish a State Dementia Care Research Center, which will include the creation and integration of data on home and community-based services and healthcare data within participating states and support the dissemination of findings to stakeholders, the public, and policymakers.
The key accomplishments summary is current as of July 2024.