# A communication-based intervention for early stage dementia patient-caregiver dyads to increase engagement in advance care planning and reduce caregiver burden

> **NIH NIH R21** · WEILL MEDICAL COLL OF CORNELL UNIV · 2022 · $256,387

## Abstract

PROJECT SUMMARY
The progressive cognitive decline that is the hallmark of dementia results in the eventual inability to make
healthcare decisions. As a result, caregivers play an inevitable and central role in end-of-life (EOL) care. Yet,
few patients with Alzheimer’s Disease and Related Dementias (ADRD; 22-39%) engage in advance care
planning (ACP) or discuss EOL care wishes with their caregivers. Few interventions designed to increase
engagement in ACP and completion of advance directives in ADRD patients have been developed and even
fewer include both the caregiver and the ADRD patient prior to the loss of decision-making capacity. The
proposed study aims to develop, and pilot test a communication-based intervention to improve ADRD patient
and caregiver preparedness for and engagement in ACP, completion of advance directives, and knowledge of
disease trajectory. Informed by prior work of the study team in ACP and EOL care in patient-caregiver dyads
and interventions for persons with mild cognitive impairment and dementia and their caregivers, the goals of
this study are to: (1) develop a communication-based intervention for ADRD patients and caregivers that
includes theoretically grounded communication strategies (e.g., acknowledgment, validation of fears) and
distress management techniques (e.g., deep breathing, muscle relaxation); (2) evaluate the feasibility and
acceptability of the intervention; and (3) test the preliminary efficacy of the intervention on ADRD patients’ and
caregivers’ preparedness for and engagement in ACP, completion of advance directives, and understanding of
disease trajectory (primary outcomes) as well as concordance on the PWD’s healthcare values, perceived
need for ACP, psychological distress, communication quality, and caregiver burden (secondary outcomes). To
meet these goals, we will collect feedback from patients and their caregivers (n=10 dyads) and clinical and
research experts (n=10) to adapt and refine the intervention. Next, we will pilot test the intervention with an
open trial of n=30 patient-caregiver dyads and assess outcomes at baseline, post-intervention, and three
months later to determine the feasibility, acceptability, and preliminary efficacy of the intervention on primary
and secondary outcomes. These results will inform a future NIH R01 application to conduct a large-scale
randomized clinical trial of intervention efficacy. Grounded in established theories of inhibitory learning and
social-cognitive processing, the present study takes the novel approach of integrating communication and
distress management techniques to improve ADRD patients’ and caregivers’ ability to discuss difficult EOL
topics while managing the distress associated with these topics. It is expected that these results will provide a
strong foundation for a program of research focused on including ADRD patients prior to the loss of decision-
making capacity into interventions as a novel and innovative way to improve engagement ...

## Key facts

- **NIH application ID:** 10461153
- **Project number:** 5R21AG070501-02
- **Recipient organization:** WEILL MEDICAL COLL OF CORNELL UNIV
- **Principal Investigator:** SARA J CZAJA
- **Activity code:** R21 (R01, R21, SBIR, etc.)
- **Funding institute:** NIH
- **Fiscal year:** 2022
- **Award amount:** $256,387
- **Award type:** 5
- **Project period:** 2021-08-15 → 2025-04-30

## Primary source

NIH RePORTER: https://reporter.nih.gov/project-details/10461153

## Citation

> US National Institutes of Health, RePORTER application 10461153, A communication-based intervention for early stage dementia patient-caregiver dyads to increase engagement in advance care planning and reduce caregiver burden (5R21AG070501-02). Retrieved via AI Analytics 2026-05-25 from https://api.ai-analytics.org/grant/nih/10461153. Licensed CC0.

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