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

> **NIH NIH R01** · UNIVERSITY OF MICHIGAN AT ANN ARBOR · 2020 · $1,904,183

## Abstract

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.

## Key facts

- **NIH application ID:** 9952294
- **Project number:** 5R01AG062477-02
- **Recipient organization:** UNIVERSITY OF MICHIGAN AT ANN ARBOR
- **Principal Investigator:** VICKI A. FREEDMAN
- **Activity code:** R01 (R01, R21, SBIR, etc.)
- **Funding institute:** NIH
- **Fiscal year:** 2020
- **Award amount:** $1,904,183
- **Award type:** 5
- **Project period:** 2019-06-15 → 2024-05-31

## Primary source

NIH RePORTER: https://reporter.nih.gov/project-details/9952294

## Citation

> US National Institutes of Health, RePORTER application 9952294, Trends and Dynamics in Caregiving for Alzheimer’s Disease and Related Dementias: Extending the National Study of Caregiving (5R01AG062477-02). Retrieved via AI Analytics 2026-05-22 from https://api.ai-analytics.org/grant/nih/9952294. Licensed CC0.

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