# Preparation for End of Life Decision Making in Mild Alzheimer's Disease

> **NIH NIH R01** · EMORY UNIVERSITY · 2021 · $569,921

## Abstract

Preparation for End-of-Life Decision Making in Mild Alzheimer's Disease
ABSTRACT
Alzheimer's disease (AD) is a leading cause of death and affect over 5 million people in the U.S. AD cannot be
effectively prevented or cured. For those with advanced AD, intensive or burdensome end-of-life care is
common. Nearly 41% undergo at least one intensive intervention (e.g., tube feeding, mechanical ventilation) in
the last 3 months of life, which may prolong life but not address quality of life or quality of dying. People in the
early stages of AD are encouraged to engage in advance care planning (ACP) while they are still competent to
appoint a surrogate decision maker and meaningfully participate in ACP discussions with the surrogate. Yet
only a minority of older adults with early cognitive impairment engage in ACP following the diagnosis. A failure
to engage in ACP before the window of opportunity closes (i.e. before loss of decision making capacity) has
serious adverse consequences; family members are left to make decisions regarding care transition, tube
feeding, and other life-sustaining treatment, often driven by a culture of technological imperative to deliver
aggressive or futile medical care to very frail older adults. These family members experience considerable
negative mental health sequelae after they face end-of-life decision making. To address these gaps, we will
adapt and pilot test an efficacious ACP intervention, SPIRIT (Sharing Patient's Illness Representation to
Increase Trust), with patients with mild AD and their surrogates (NIH Stage I behavioral intervention
development) to promote open, honest discussions while such discussions about end-of-life care are possible.
Our goal is to produce an effective and maximally implementable ACP intervention for patients with mild AD
and their surrogates. Specific Aim 1 is to adapt SPIRIT (in person) to target patients with mild AD and their
surrogates through a process of modification-pretesting-refinement using stakeholders (patients, family
caregivers, and clinicians) and experts, including adapting the delivery mode to interactive web-based
videoconferencing (SPIRIT-remote). Specific Aim 2 is, in a 3-group RCT with 120 patient-surrogate dyads, to
evaluate the feasibility and acceptability of SPIRIT in-person and SPIRIT-remote, and their preliminary efficacy
compared to usual care on preparedness outcomes for end-of-life decision making (dyad congruence on goals
of care, patient decisional conflict, and surrogate decision-making confidence) shortly after the intervention. We
will also evaluate whether SPIRIT-in person and SPIRIT-remote result in an embodiment of the patient's
wishes by 1 year post intervention, and interview a sample of surrogates at 1 year to assess the perceived
impact of the intervention conditions (secondary aims). Preliminary efficacy data will be analyzed using mixed
effects regression models. Qualitative analysis will use content and thematic techniques. This Stage I
be...

## Key facts

- **NIH application ID:** 10142324
- **Project number:** 5R01AG057714-05
- **Recipient organization:** EMORY UNIVERSITY
- **Principal Investigator:** MI-KYUNG SONG
- **Activity code:** R01 (R01, R21, SBIR, etc.)
- **Funding institute:** NIH
- **Fiscal year:** 2021
- **Award amount:** $569,921
- **Award type:** 5
- **Project period:** 2017-09-30 → 2024-04-30

## Primary source

NIH RePORTER: https://reporter.nih.gov/project-details/10142324

## Citation

> US National Institutes of Health, RePORTER application 10142324, Preparation for End of Life Decision Making in Mild Alzheimer's Disease (5R01AG057714-05). Retrieved via AI Analytics 2026-05-27 from https://api.ai-analytics.org/grant/nih/10142324. Licensed CC0.

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