# Home, but homebound: The impact of caregiving, financial, and community resources on the lives of individuals with dementia

> **NIH NIH R01** · ICAHN SCHOOL OF MEDICINE AT MOUNT SINAI · 2021 · $423,750

## Abstract

Home, but homebound: The impact of caregiving, financial, and community resources on the lives of
individuals with dementia
Summary/Abstract
Individuals with dementia live for many years at home in the community. Even though the community is the
overwhelming preference for site of care, the experience of living with dementia in the community is not always
optimal for patients and their caregiving families. Our previous work using data from the 2011 National Health
and Aging Trends Study estimated that one million persons with dementia are homebound (i.e., rarely or never
leave the home), the majority of whom also have other serious medical illnesses. This homebound population
with dementia is larger than the number of individuals with dementia currently living in nursing homes.
Although being homebound is likely to have a profound impact on the lived experience of individuals with
dementia, we currently do not know the frequency of transitions in or out of homebound status or the
implications of homebound status for patients' quality of life and access to care. Furthermore, an individual's
ability to leave the home is not only determined by the cognitive and functional decline associated with
dementia progression. Social resources including caregiving networks (social support, caregiver availability
and well-being), financial factors (income, insurance, economic well-being), and community context (cohesion,
walkability, service availability) also are likely to contribute. To achieve the study aims, we will use the
longitudinal, nationally representative National Health and Aging Trends Study and the companion National
Study of Caregivers with linkages to Medicare claims, the U.S Census and other geographic data. Through
rigorous analysis of these data, we will examine how social resources impact if and when individuals with
dementia become homebound, adverse consequences of homebound status, and critically, factors that help
protect patients against homebound status. In addition to characterizing the timing of transitions to homebound
status and nursing home placement among individuals living with dementia (Aim 1), we will also examine the
impact of one's caregiving network, financial resources, and community/neighborhood context on transitions to
homebound status among individuals with dementia (Aim 2), and evaluate the consequences of homebound
status on valued life activities, unmet care needs, and potentially avoidable health care use (Aim 3). In
summary, this project will critically enhance our understanding of the lived experience of patients with dementia
by documenting the frequency and duration of episodes of being homebound, evaluating modifiable factors
that predict homebound status, and quantifying the consequences of homebound status.

## Key facts

- **NIH application ID:** 10066300
- **Project number:** 5R01AG060967-03
- **Recipient organization:** ICAHN SCHOOL OF MEDICINE AT MOUNT SINAI
- **Principal Investigator:** KATHERINE A ORNSTEIN
- **Activity code:** R01 (R01, R21, SBIR, etc.)
- **Funding institute:** NIH
- **Fiscal year:** 2021
- **Award amount:** $423,750
- **Award type:** 5
- **Project period:** 2019-02-01 → 2023-11-30

## Primary source

NIH RePORTER: https://reporter.nih.gov/project-details/10066300

## Citation

> US National Institutes of Health, RePORTER application 10066300, Home, but homebound: The impact of caregiving, financial, and community resources on the lives of individuals with dementia (5R01AG060967-03). Retrieved via AI Analytics 2026-05-23 from https://api.ai-analytics.org/grant/nih/10066300. Licensed CC0.

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