# Reducing Burden in Care Partners of Community-Dwelling Persons with Dementia and Oropharyngeal Dysphagia

> **NIH NIH R61** · FEINSTEIN INSTITUTE FOR MEDICAL RESEARCH · 2024 · $414,552

## Abstract

We propose an NIH Stage I (R61) study to adapt, refine, and pilot test a Web-based Care Partner Tool for
Feeding in Dysphagia (WeCareToFeedDysphagia), followed by an NIH Stage IV (R33) full-scale, 24-month,
randomized controlled trial (RCT), to determine the efficacy of WeCareToFeedDysphagia for reducing burden
in care partners of community-dwelling persons with Alzheimer’s disease (AD) and AD-related dementias
(AD/ADRD), diagnosed with oropharyngeal dysphagia (OD) during hospitalization. OD, a devastating
syndrome that affects nearly 90% of hospitalized patients with AD/ADRD, is a significant predictor of care-
partner burden, which, in turn, leads to poor care-partner and patient outcomes (e.g., quality of life, QoL). Our
preliminary data indicate that, upon hospital discharge, care partners of patients with AD/ADRD face dramatic
and persistent unmet OD-related caregiving needs: A. knowledge deficits; B. unrealistic management
expectations; C. patient QoL considerations; D. inability to cope with patient’s frustration/refusal to eat
dysphagia diets; and E. lack of competencies/skills. The overall goal of this proposal is to reduce burden in
care partners of community-dwelling persons with AD/ADRD and OD using a single-component, easily
administered, intervention that addresses unmet OD-related caregiving needs. Guided by a self-regulation
theoretical framework, WeCareToFeedDysphagia will use written and video content, care-partner testimonials,
frequently asked questions, and resource links, to: A. provide accurate information (e.g., dysphagia diets); B.
set realistic expectations; C. identify/support feeding goals (QoL considerations); D. acknowledge/support
care-partner feelings; and E. provide competencies/skills for OD management. The R61 phase will adapt,
refine, and pilot test WeCareToFeedDysphagia to reduce care-partner burden by: adapting our existing web-
based tool by incorporating stakeholder input (Aim 1), resulting in WeCareToFeedDysphagia; refining the tool
through usability/acceptability testing (Aim 2); and conducting a pilot RCT (N=60) to determine the preliminary
efficacy of WeCareToFeedDysphagia to reduce care-partner burden, as well as the feasibility of a subsequent
full-scale RCT (Aim 3). We will assess care partner reported outcomes using technology (e.g., smartphones):
3-month post-hospital care-partner burden (primary outcome) and QoL (secondary outcome). The go/no-go
criteria for the full-scale RCT is defined as: feasibility as ≥50% consented, ≤20% attrition at 3 months, and
≥80% tool engagement; and preliminary efficacy as effect size of ≥0.3 for reducing care-partner burden. The
R33 phase will determine the efficacy of WeCareToFeedDysphagia to reduce care-partner burden by:
conducting a 24-month, full-scale RCT (N=406) at 11 diverse Northwell Health hospitals (Aim 4) and
conducting moderator and mediator analyses to examine the impact on intervention efficacy (Aim 5). The
proposal directly responds to NIA’s strategic...

## Key facts

- **NIH application ID:** 10899419
- **Project number:** 5R61AG079930-02
- **Recipient organization:** FEINSTEIN INSTITUTE FOR MEDICAL RESEARCH
- **Principal Investigator:** Michael A Diefenbach
- **Activity code:** R61 (R01, R21, SBIR, etc.)
- **Funding institute:** NIH
- **Fiscal year:** 2024
- **Award amount:** $414,552
- **Award type:** 5
- **Project period:** 2023-08-15 → 2025-07-31

## Primary source

NIH RePORTER: https://reporter.nih.gov/project-details/10899419

## Citation

> US National Institutes of Health, RePORTER application 10899419, Reducing Burden in Care Partners of Community-Dwelling Persons with Dementia and Oropharyngeal Dysphagia (5R61AG079930-02). Retrieved via AI Analytics 2026-05-27 from https://api.ai-analytics.org/grant/nih/10899419. Licensed CC0.

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