# Engaging Family and Other Unpaid Caregivers of Persons with Dementia in Health Care Delivery: A Model for Chronic and Progressive Disease

> **NIH NIH R13** · WEILL MEDICAL COLL OF CORNELL UNIV · 2020 · $49,735

## Abstract

PROJECT SUMMARY
This R13 aims to establish a policy- and practice-aligned research agenda for enhancing caregiver
identification and engagement in health care settings, using Alzheimer's disease and related dementias
(ADRD) as a model for other chronic and progressive diseases. An estimated 18 million caregivers (relatives,
friends) provide 1.3 billion hours of care on a monthly basis to community-dwelling older adults (≥65 years).
These caregivers perform essential functions within the health care system, from accompanying the care
recipient to primary care appointments to facilitating hospital discharge processes to coordinating care across
settings and providers. Caregivers of persons with ADRD play a particularly vital role. They provide more hours
of care than other caregivers and shoulder additional responsibilities, such as monitoring the older adult's
safety, making proxy health care decisions, and acting as an advocate on the patient's behalf. While congress
has passed several bipartisan Acts to support caregivers (e.g., the Recognize, Assist, Include, Support, and
Engage (RAISE) Family Caregivers Act; Caregiver Advise, Record, and Enable (CARE) Act; and National
Alzheimer's Project Act (NAPA)), little research has evaluated the impact of caregiver-based policies on
outcomes for individuals (caregivers, patients), practice, or health care systems, and few evidence-based
strategies have been designed to optimize caregiver involvement in health care delivery processes. Needed is
a targeted research agenda that is aligned with policy and practice initiatives to ensure a robust, unified
approach to family caregiver identification and engagement in health care settings. To establish credible
research priorities for engaging caregivers in health care delivery processes, this R13 will use an evidence-
based, participatory method designed to elicit multidisciplinary input: the Cornell Institute for Translational
Research on Aging (CITRA) Research-to-Practice Consensus Workshop Model. The CITRA Model harnesses
practice wisdom by engaging stakeholders with diverse expertise, skills, and experience in a process of
articulating and refining research priorities. Using this model as a guiding framework, we will accomplish the
three aims: 1) Convene a consensus conference with key stakeholders (social scientists, practitioners,
individuals in policy-related roles, and family caregivers) to review the evidence behind existing policies and
practices for caregiver engagement in health care delivery, and co-develop a policy- and practice-aligned
research agenda, 2) Disseminate conference findings via publication (a peer-reviewed journal article, non-
technical report, and media release) and presentation (at national conferences and to the CARE Act and NAPA
advisory councils), and 3) Develop and maintain working interest groups to foster continued collaboration
among conference attendees who are working on projects related to ADRD caregiving and health care...

## Key facts

- **NIH application ID:** 9914392
- **Project number:** 1R13AG063512-01A1
- **Recipient organization:** WEILL MEDICAL COLL OF CORNELL UNIV
- **Principal Investigator:** Catherine Riffin
- **Activity code:** R13 (R01, R21, SBIR, etc.)
- **Funding institute:** NIH
- **Fiscal year:** 2020
- **Award amount:** $49,735
- **Award type:** 1
- **Project period:** 2020-09-15 → 2022-08-31

## Primary source

NIH RePORTER: https://reporter.nih.gov/project-details/9914392

## Citation

> US National Institutes of Health, RePORTER application 9914392, Engaging Family and Other Unpaid Caregivers of Persons with Dementia in Health Care Delivery: A Model for Chronic and Progressive Disease (1R13AG063512-01A1). Retrieved via AI Analytics 2026-05-23 from https://api.ai-analytics.org/grant/nih/9914392. Licensed CC0.

---

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