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Care & Caregiving: Caregiving data infrastructure (Milestone 13.C)


Timeline Start - End

2017 - 2021

Research Implementation Area

Research on Care and Caregiver Support

Establish data infrastructure for the study of dementia caregiving.

Success Criteria

  • 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. 

Accomplishments/Implementation Activities

Funding Initiatives

Research Programs and Resources

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