# Supporting Family Caregivers of Persons with Dementia

> **NIH NIH R01** · UNIVERSITY OF PENNSYLVANIA · 2024 · $593,730

## Abstract

Project Summary
Efforts to accurately estimate the prevalence of pain and quality of pain management in the
population of patients with Alzheimer’s Disease and Related Dementias (ADRD) have met with
varied success. Communication about pain can be extremely challenging for patients with
advanced dementia, and the etiology of pain difficult to determine. In addition, patients may
resist pain treatments due to their inability to understand the purpose of analgesia and may
receive decreased benefit from analgesia due to the disruption of the placebo effect. Family
caregivers (family members, spouses, friends or others who assume the critical caregiving role)
are at high risk for chronic stress, deteriorating physical health, financial difficulties, and
premature death. They suffer from high rates of depression, anxiety and grief; pain
management for their patients has been one of the most commonly expressed concerns. Based
on preliminary work whereby we examined pain management challenges and needs of
caregivers of patients with ADRD, we designed a behavioral intervention entitled ENCODE to
assist caregivers in effectively identifying and communicating their pain management challenges
and needs. We propose a 5- year randomized clinical trial in which caregivers of patients with
ADRD will be randomly assigned to a group receiving standard care with the addition of “friendly
calls” (attention control group) or a group receiving standard care with the addition of the
ENCODE intervention (intervention group). The specific aims are to assess the impact of the
intervention on caregiver outcomes including quality of life, health, anxiety and depression, and
their perceptions of the intervention. Additionally, in order to facilitate the adoption of the
intervention in practice we will conduct a cost analysis demonstrating the costs associated with
its delivery and identify barriers and facilitators to adoption.

## Key facts

- **NIH application ID:** 10760253
- **Project number:** 5R01AG069936-03
- **Recipient organization:** UNIVERSITY OF PENNSYLVANIA
- **Principal Investigator:** George Demiris
- **Activity code:** R01 (R01, R21, SBIR, etc.)
- **Funding institute:** NIH
- **Fiscal year:** 2024
- **Award amount:** $593,730
- **Award type:** 5
- **Project period:** 2022-01-15 → 2026-12-31

## Primary source

NIH RePORTER: https://reporter.nih.gov/project-details/10760253

## Citation

> US National Institutes of Health, RePORTER application 10760253, Supporting Family Caregivers of Persons with Dementia (5R01AG069936-03). Retrieved via AI Analytics 2026-05-24 from https://api.ai-analytics.org/grant/nih/10760253. Licensed CC0.

---

*[NIH grants dataset](/datasets/nih-grants) · CC0 1.0*