Trends and Dynamics in Caregiving for Alzheimer’s Disease and Related Dementias: Extending the National Study of Caregiving

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Project Summary This project will enhance understanding of informal caregiving to older adults with Alzheimer's disease and related dementia (ADRD) through new national longitudinal data that builds upon the National Health and Aging Trends Study (NHATS) and its companion National Study of Caregiving (NSOC). Together, NHATS and NSOC are the only national data on caregiving to a well characterized population of older adults that offer perspectives from both caregiver and recipient. NHATS collects detailed information annually about the disability and care needs for a nationally representative panel of over 8,000 adults 65 and older. NSOC interviews caregivers of NHATS participants about the care provided, positive and negative aspects of caring, the support environment, and other life circumstances (e.g. employment, health, wellbeing). Until now NSOC has been conducted at irregular intervals (2011, 2015 and 2017). Although offering important analytic opportunities, key aspects of caregiving including dynamics over time and at the end of life for older adults with and without ADRD cannot be adequately addressed with these data. And basic knowledge is lacking about how impending changes in underlying demographic forces will shape caregiver experiences and outcomes as the Baby Boom generation continues to age. This project will fill these gaps by: (1) Conducting four annual rounds of NSOC (2020-2023); (2) Disseminating NSOC each year through www.nhatsdata.org, developing online user materials, holding workshops to train users to use multiple waves of NSOC, and hosting an NSOC User Research Conference; and (3) Conducting targeted analyses to describe recent (2011-2020) and longer-term (1999-2020) trends in informal ADRD care experiences and outcomes, understand demographic forces driving such trends, and highlight contrasts between ADRD and other caregivers. By collecting and disseminating a new, annual NSOC, the proposed project will allow researchers to study a variety of innovative questions about informal caregiving for older adults with ADRD.