# Effects of Informal Care for persons with Alzheimer's Disease and related dementias

> **NIH NIH R01** · UNIVERSITY OF PENNSYLVANIA · 2020 · $624,949

## Abstract

Effects of Informal Care for persons with Alzheimer's Disease and Related Dementias
 The current debate about how best to meet the growing demand for patient-centered, high-quality long-
term care for persons with ADRD in the least restrictive setting possible has centered almost solely on the direct
and indirect costs of each type of care. A crucial missing piece is a comparison of the benefits. While receiving
informal care may seem intuitively appealing, we currently know surprisingly little about the implications of this
choice for outcomes of the individuals receiving the care.
 Our study would be the first to measure the causal impact of receiving informal versus formal long-term
care on key and multi-faceted outcomes for the care recipient, primarily using the Health and Retirement Study,
a nationally-representative dataset of Americans age 50+. Our analysis would include all individuals receiving
long-term care, as well as a sub-sample of individuals living with ADRD, since informal care costs account for
approximately half the total costs of the disease. Our health outcomes include a rich set of self-reported physical,
mental, emotional, and social health measures, as well as self-reported and administrative health care utilization
measures. In order to estimate the causal impact of formal and informal care, we employ instrumental variable
techniques and a set of instruments that have been successfully used to predict informal care receipt in previous
work using the same dataset. In addition, we propose new and promising instruments, including the supply of
formal care available in the market. Finally, our study is the first to take a comprehensive look at all forms of
formal care, including the plethora of private-pay residential care options. To do so, this research brings together
the Area Health Resource Files (AHRF) and the NIC-MAP database, the industry's premiere dataset concerning
the long-term care market.
 Using this approach, our study proposes to address the following specific aims: to describe
comprehensively an expanded profile of the supply of publicly and privately financed formal care in local markets
and its correlation with informal care, and to quantify the difference in care recipient outcomes caused by
receiving informal versus formal care. This proposal will inform the policy tradeoffs between supporting informal
care providers and expanding publicly financed formal care options.

## Key facts

- **NIH application ID:** 9982156
- **Project number:** 5R01AG057501-04
- **Recipient organization:** UNIVERSITY OF PENNSYLVANIA
- **Principal Investigator:** Norma B Coe
- **Activity code:** R01 (R01, R21, SBIR, etc.)
- **Funding institute:** NIH
- **Fiscal year:** 2020
- **Award amount:** $624,949
- **Award type:** 5
- **Project period:** 2017-09-30 → 2023-05-31

## Primary source

NIH RePORTER: https://reporter.nih.gov/project-details/9982156

## Citation

> US National Institutes of Health, RePORTER application 9982156, Effects of Informal Care for persons with Alzheimer's Disease and related dementias (5R01AG057501-04). Retrieved via AI Analytics 2026-05-25 from https://api.ai-analytics.org/grant/nih/9982156. Licensed CC0.

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