# The Burden of Care for Adults with Dementia: Impact on Care Quality and Family Outcomes

> **NIH NIH R01** · ICAHN SCHOOL OF MEDICINE AT MOUNT SINAI · 2020 · $423,750

## Abstract

Project Abstract:
Care for older adults with Alzheimer's disease and related dementias (ADRD) during the final years of life is
extremely costly and families carry a high share of this burden. Costs and shifting patterns of year-over-year
spending are likely associated with adverse care quality and family financial outcomes, yet to date individual-
level, comprehensive, longitudinal data on spending and its effect on outcomes have not been examined.
Existing data also demonstrate that those vulnerable subgroups least able to cope are at greatest financial risk,
which may result in further disparities in outcomes. Therefore, this project aims to understand the magnitude
of this healthcare spending and its distribution across payers and families over time and how this spending
contributes to disparities in care quality and family outcomes among older adults with dementia, particularly
among vulnerable and underserved populations. The study will assemble data that capture total healthcare
spending and proportion by payer (i.e., Medicare, Medicaid, individuals, families, and others), using the
nationally-representative Health and Retirement Study and linked Medicare and Medicaid claims data.
Specifically, the project will 1) Compare yearly patterns of total health-related costs and proportion of costs
paid by Medicare, Medicaid, out-of-pocket, informal caregiving, and other payers, in each of the last 5 years of
life among older adults with or without ADRD and across vulnerable subgroups; 2) Test if out-of-pocket costs
exceeding household wealth are associated with indicators of care quality (nursing home admission for long-
term care, ≥3 transitions across care sites in the last 90 days of life, suboptimal hospice use, i.e. enrollment >6
months or <3 days, and in-hospital death) among older adults with or without ADRD and across vulnerable
subgroups; and 3) Examine if out-of-pocket costs exceeding household wealth are associated with potentially
adverse intergenerational family financial outcomes (cohabitation, caregiving and financial support by adult
children) among older adults with or without ADRD and across vulnerable subgroups. The results will directly
inform health and social policy, and help to ensure high quality care for older adults with ADRD, while avoiding
impoverishment of families and compounding of racial and socioeconomic disparities.

## Key facts

- **NIH application ID:** 9971423
- **Project number:** 5R01AG054540-04
- **Recipient organization:** ICAHN SCHOOL OF MEDICINE AT MOUNT SINAI
- **Principal Investigator:** AMY STEVES KELLEY
- **Activity code:** R01 (R01, R21, SBIR, etc.)
- **Funding institute:** NIH
- **Fiscal year:** 2020
- **Award amount:** $423,750
- **Award type:** 5
- **Project period:** 2017-05-15 → 2022-04-30

## Primary source

NIH RePORTER: https://reporter.nih.gov/project-details/9971423

## Citation

> US National Institutes of Health, RePORTER application 9971423, The Burden of Care for Adults with Dementia: Impact on Care Quality and Family Outcomes (5R01AG054540-04). Retrieved via AI Analytics 2026-05-24 from https://api.ai-analytics.org/grant/nih/9971423. Licensed CC0.

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