# Improving Primary Care Clinicians' Advance Care Planning for Alzheimer's Disease and Related Dementias

> **NIH NIH R01** · UNIVERSITY OF PITTSBURGH AT PITTSBURGH · 2024 · $780,003

## Abstract

Advance care planning (ACP) is the planning that takes place between healthcare team
members and patients prior to the onset of serious illness to ensure a person receives medical
care that aligns with their wishes and values. Alzheimer’s disease and Alzheimer’s disease related
neurodegenerative dementias (AD/ADRD) are incurable, progressive and terminal diseases with
unparalleled impact on the US healthcare system, patients, and families. Over 5 million Americans
live with AD/ADRD, and people with AD/ADRD lose decision-making capacity years in advance
of critical and serious medical illness. Clinicians must discern when and how people with
AD/ADRD can express valid treatment preferences at all stages of AD/ADRD. Most people with
AD/ADRD are managed by primary care team members who receive little education and training
on dementia-specific ACP skills. Primary care teams, including physicians, advance practice
providers, nurses and social workers, are well-positioned to empower people living with AD/ADRD
(PLwD) and their families in ACP, yet lack critical dementia-specific ACP skills. Evidence-based
ACP interventions for PLwD are rare, and no prior clinical trial addresses AD/ADRD ACP in
primary care. Our experienced investigative team has demonstrated feasibility and preliminary
efficacy of an AD ACP intervention (AD ACP Toolkit) for primary care teams. It includes both a 3-
hour dementia-specific education and ACP communication skills training session and subsequent
ACP implementation guidance. We will test whether our AD ACP intervention will enable primary
care teams to better conduct goals of care (GOC) discussions more efficiently and thus increase
the number of GOC discussions held as compared to controls. We will deliver the AD ACP Toolkit
to 10 intervention primary care clinics and usual care to 10 control clinics using a computerized
case-finding algorithm within a large integrated health care system. Our first aim is to conduct a
trial comparing the AD ACP Toolkit to usual care on GOC discussions and other ACP measures
(N=800). The second aim is to examine the 18-month healthcare utilization outcomes for all PLwD
with >50% 5-year mortality risk between intervention and control (N=2,660). We will conduct
secondary analyses to examine outcomes by key patient and team characteristics. Lastly, we will
assess implementation via surveys in the intervention clinics (N=100) followed by interviews
(N=60) to explain variations in those outcomes. This project addresses National Institute on
Aging’s mission to improve care for older adults with AD/ADRD in primary care. This work will
improve how to incorporate ACP approaches for aging-related conditions by primary care teams
and may be adaptable to other outpatient specialties such as oncology or cardiology.

## Key facts

- **NIH application ID:** 10935963
- **Project number:** 5R01AG083828-02
- **Recipient organization:** UNIVERSITY OF PITTSBURGH AT PITTSBURGH
- **Principal Investigator:** Christine E Kistler
- **Activity code:** R01 (R01, R21, SBIR, etc.)
- **Funding institute:** NIH
- **Fiscal year:** 2024
- **Award amount:** $780,003
- **Award type:** 5
- **Project period:** 2023-09-30 → 2028-05-31

## Primary source

NIH RePORTER: https://reporter.nih.gov/project-details/10935963

## Citation

> US National Institutes of Health, RePORTER application 10935963, Improving Primary Care Clinicians' Advance Care Planning for Alzheimer's Disease and Related Dementias (5R01AG083828-02). Retrieved via AI Analytics 2026-05-23 from https://api.ai-analytics.org/grant/nih/10935963. Licensed CC0.

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