# LEADing End-of-Life Dementia Care Conversations

> **NIH NIH R01** · UTAH STATE HIGHER EDUCATION SYSTEM--UNIVERSITY OF UTAH · 2022 · $732,521

## Abstract

PROJECT SUMMARY/ABSTRACT
Advance care planning (ACP) is the process that allows individuals to express their future health care values
and preferences, so that these wishes can be enacted in the event that they become incapacitated and unable
to participate in their own health care decisions. In the case of Alzheimer’s disease and related dementias
(ADRD), the person with dementia (care recipient), almost inevitably loses decisional capacity toward the end
of life, given the progressive decline in cognitive functioning that accompanies the disease over time. The care
partners to persons with dementia, most often family members such as spouse/partners and adult children, are
therefore tasked with making end-of-life decisions on behalf of the care recipient with ADRD. These care
partners are not always well-informed of the care recipient’s end-of-life values and preferences, and therefore
may not feel confident in their ability to make decisions regarding care and treatment at the end of life, resulting
in unnecessary, futile, and often unwanted medical treatments and interventions. Oftentimes, families do not
want to engage in these challenging conversations and wait too long, whereby the care recipient with ADRD no
longer has decisional ability to participate in the advance care planning process. We developed “The LEAD
Guide” (Life-Planning in Early Alzheimer’s and Dementia), as a tool to help persons with preclinical awareness
of ADRD risk and those with early-stage cognitive impairment to begin these important conversations with a
care partner. With funding from the National Alzheimer’s Association, we have created a preliminary interactive
LEAD Intervention that combines the LEAD Guide with educational materials about the importance of having
conversations about, documenting (advance directive), and sharing ACP wishes with other family members
and health care providers. This proposal outlines a mixed-method research study where we aim to: 1) evaluate
the usability, accepability, feasability, and initial efficacy of the LEAD Intervention as a self-administered,
dementia-focused web-based tool that can be used to facilitate the ACP process for 60 diverse community-
dwelling pairs consisting of persons in the preclinical or early stage of ADRD and their care partner, 2) assess
the initial efficacy of the LEAD Intervention on decision-making confidence, relationship quality, subjective well-
being, and anxiety in both the care recipient and care partner, and 3) examine if the process of ACP
congruence (shared understanding of the care recipients’ values and preferences regarding EOL care) as the
primary factor related to changes observed during the LEAD intervention. Results from this study have the
potential to guide and accelerate the implementation of the LEAD Intervention to community and health care
practice, where a dementia-focused ACP process is needed.

## Key facts

- **NIH application ID:** 10370764
- **Project number:** 1R01AG069033-01A1
- **Recipient organization:** UTAH STATE HIGHER EDUCATION SYSTEM--UNIVERSITY OF UTAH
- **Principal Investigator:** KARA Bottiggi Dassel
- **Activity code:** R01 (R01, R21, SBIR, etc.)
- **Funding institute:** NIH
- **Fiscal year:** 2022
- **Award amount:** $732,521
- **Award type:** 1
- **Project period:** 2022-06-01 → 2027-05-31

## Primary source

NIH RePORTER: https://reporter.nih.gov/project-details/10370764

## Citation

> US National Institutes of Health, RePORTER application 10370764, LEADing End-of-Life Dementia Care Conversations (1R01AG069033-01A1). Retrieved via AI Analytics 2026-05-23 from https://api.ai-analytics.org/grant/nih/10370764. Licensed CC0.

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