# Improving Incontinence Support for Family Caregivers and Persons Living with Dementia

> **NIH NIH R21** · UNIVERSITY OF CALIFORNIA, SAN FRANCISCO · 2024 · $246,000

## Abstract

PROJECT SUMMARY
There is a fundamental gap in our understanding of how best to care for persons living with dementia (PLWD)
and urinary incontinence (UI), many of whom are being cared for in their homes by family members with no
prior caregiving experience (i.e., spouses and children). While many of these family caregivers are highly
motivated and dedicated to caring for their loved ones and to preserving their dignity, many are also burdened
by the stigmatized nature of UI and the associated complexities of providing such intimate care to their spouse
or parent. Further, a lack support, tools, and resources necessary to provide the type of continence care
required to maintain their loved one in the home is often a final deciding factor for institutionalization.
Therefore, there is a critical need to better understand and support these caregivers, starting with a better
understanding of their experience, challenges, and perspectives, aligned with those of the PLWD and UI, on
this important problem to inform possible solutions. Our overarching research objective is to support these
caregivers to more effectively care for their PLWD and UI with safety and dignity, ultimately keeping them in
their home for as long as possible. The objective of the proposed study is to better understand the unique UI
support needs, preferences, and priorities of family caregivers of PLWD and the PLWD in the community to lay
the groundwork for potential future interventions in the home environment. The central hypothesis is that there
are identifiable and actionable caregiver needs in caring for PWLD and UI in the home that can be used to
develop future interventions. This study will utilize a total of 6 focus groups consisting of 3 types of family
caregivers (2 with women spouses, 2 with men spouses, and 2 with daughters/sons) from both rural and urban
communities to understand their UI support needs, 12 individual interviews with care dyads (caregivers, early
stage PWLD) to understand their current interpersonal dynamics and future priorities for management of UI,
and a participatory photography methodology of with 12 caregivers to illuminate unique opportunities for
intervention for UI care in the home. This study is innovative in terms of both content (the focus on different
caregiver groups for PLWD and UI) and methodology (the use of participatory photography methodology to
capture novel, feasible, and acceptable areas for future innovation and intervention). The proposed research
is significant because there are limited data on caregivers for PLWD with regards to in home UI care, which is
an extremely common, understudied, and underserved area of research in this already vulnerable population.
Findings from this study will inform a future R01 designed to create and implement an intervention to assist
family caregivers of PLWD and UI to help serve them to care for their loved ones with dignity and to keep them
in the home for as long as possible.

## Key facts

- **NIH application ID:** 10985878
- **Project number:** 1R21AG089658-01
- **Recipient organization:** UNIVERSITY OF CALIFORNIA, SAN FRANCISCO
- **Principal Investigator:** Anne M. Suskind
- **Activity code:** R21 (R01, R21, SBIR, etc.)
- **Funding institute:** NIH
- **Fiscal year:** 2024
- **Award amount:** $246,000
- **Award type:** 1
- **Project period:** 2024-09-01 → 2026-06-30

## Primary source

NIH RePORTER: https://reporter.nih.gov/project-details/10985878

## Citation

> US National Institutes of Health, RePORTER application 10985878, Improving Incontinence Support for Family Caregivers and Persons Living with Dementia (1R21AG089658-01). Retrieved via AI Analytics 2026-05-28 from https://api.ai-analytics.org/grant/nih/10985878. Licensed CC0.

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