# Advance care planning for persons with ADRD: perspectives of family caregivers and trained nursing home staff

> **NIH NIH R33** · INDIANA UNIVERSITY INDIANAPOLIS · 2020 · $150,120

## Abstract

PROJECT ABSTRACT:
Advance care planning (ACP) is the process of engaging patients in conversation about their goals, values,
and preferences. ACP is particularly important for vulnerable nursing home patients with Alzheimer’s Disease
and related dementias (ADRD), who commonly experience complications that require decision-making about
medical treatments. Family caregivers are asked to make urgent decisions on behalf of these patients, often
with little preparation by poorly trained nursing home staff. There are multiple bioethical issues that arise in the
context of ACP in this context including: determination of capacity to make decisions; surrogate decisional
standards (best interest, substituted judgment, prior competent choice); surrogate burden; reconciling conflict
between patient, family and staff; informed consent; and potential for pressure or coercion in recording
preferences for medical treatments. The “Aligning Patient Preferences – a Role Offering Alzheimer’s patients,
Caregivers, and Healthcare providers Education and Support (APPROACHES)” is a pragmatic cluster
randomized controlled trial to test the effect of a structured advance care planning (ACP) intervention in 190
nursing homes in diverse settings. Facility staff are identified and trained to become ACP Specialists via on-
line courses in ACP, with a focus on supporting patients with ADRD and their family surrogate decision-
makers. Consistent with the spirit of a pragmatic trial, existing data sources are being used to evaluate the trial
outcomes, including electronic health records, the Minimum Data Set 3.0, and Medicare Claims data. This
Bioethics Supplement addresses a potential missed opportunity of this pragmatic trial through direct data
collection with 20-30 family caregivers of vulnerable ADRD patients, through semi-structured interviews, to
learn about their experiences with ACP in the setting of real-world implementation of a systematic program.
Additionally, 10-15 ACP Specialists will also be interviewed regarding their experiences facilitating
conversations with family caregivers. Findings will provide important information about ethical issues related to
implementing ACP in the nursing home setting to guide future research, implementation, and policy, including
the continued tailoring of APPROACHES in anticipation of full-scale implementation at the conclusion of the
trial.

## Key facts

- **NIH application ID:** 10130096
- **Project number:** 3R33AG057463-03S1
- **Recipient organization:** INDIANA UNIVERSITY INDIANAPOLIS
- **Principal Investigator:** SUSAN E HICKMAN
- **Activity code:** R33 (R01, R21, SBIR, etc.)
- **Funding institute:** NIH
- **Fiscal year:** 2020
- **Award amount:** $150,120
- **Award type:** 3
- **Project period:** 2017-09-30 → 2022-08-31

## Primary source

NIH RePORTER: https://reporter.nih.gov/project-details/10130096

## Citation

> US National Institutes of Health, RePORTER application 10130096, Advance care planning for persons with ADRD: perspectives of family caregivers and trained nursing home staff (3R33AG057463-03S1). Retrieved via AI Analytics 2026-05-30 from https://api.ai-analytics.org/grant/nih/10130096. Licensed CC0.

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