Care & Caregiving: Caregiving data infrastructure (Milestone 13.C)
Timeline Start - End2017 - 2021
Research Implementation AreaResearch on Care and Caregiver Support
Establish data infrastructure for the study of dementia caregiving.
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. This work is ongoing and future activities will include encouraging use of these data and protocols and continuing to support work to build caregiving data infrastructure.
The key accomplishments summary is current as of March 2022.
- 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
Research Programs and Resources
- National Study of Caregiving (NSOC)
- Examples of funded awards
- Research Network for Alzheimer’s Disease Home and Community Based Services