# Identifying Factors Predicting ACcurately End-of-Life in Dementia with Lewy Bodies and Promoting Quality End-of-Life Experiences: the PACE-DLB Study

> **NIH NIH R01** · UNIVERSITY OF FLORIDA · 2020 · $694,135

## Abstract

PROJECT SUMMARY/ABSTRACT
Dementia with Lewy bodies (DLB) is part of Lewy body dementia, the 2nd-most-common degenerative
dementia in the U.S. It is also one of the Alzheimer’s disease-related dementias (ADRDs). Evidence-based
models of end-of-life care for ADRDs are insufficient; families face difficult medical decisions with little
information for guidance. This is particularly relevant for DLB, where >70% of individuals die of the dementia
itself or failure to thrive. Caregivers describe lack of knowledge of what to expect at the end of life as an
important driver of negative end-of-life experiences. The proposed study addresses this unmet need. It also
addresses the National Institute on Aging’s priority to improve quality of care and quality of life for persons with
ADRDs at the end of life and their caregivers. This study aims to (1) determine the predictors of death within 6
months in individuals with DLB, (2) identify whether a change in caregiver measures can predict approaching
end of life of individuals with DLB, and (3) identify factors that affect quality end of life experiences for persons
with DLB and their caregivers. These aims will be accomplished through a longitudinal cohort study enrolling
dyads of individuals with DLB of at least moderate dementia severity and their caregivers. Dyads will attend
study visits every 6 months through the end of life or 3 years. Based on published clinical series, over half of
enrolled individuals with DLB are expected to die over the course of the study. To achieve diverse recruitment,
the study includes an in-person cohort where dyads are recruited from Lewy Body Dementia Association
Research Centers of Excellence and a novel virtual cohort where dyads are recruited through the Lewy Body
Dementia Association and study visits are conducted by telephone. Having a virtual cohort will capture the
experiences of individuals with DLB and caregivers not receiving care at specialty centers. Because the
majority of study measures are caregiver-reported, the in-person and virtual groups have identical study
measures, except for the Unified Parkinson Disease Rating Scale, completed only in person. Collected
measures will include demographics, DLB characteristics (e.g. cognitive, motor, behavioral, sleep, and
autonomic symptoms), health care providers and settings, caregiver considerations (e.g. resilience, support,
grief, burden), quality of life (for the patient and caregiver), and satisfaction with end of life experiences. The
caregiver will complete a final study visit 3 months after the death of the person with DLB to assess grief,
recovery, and quality of the end of life experience. By following dyads through the end of life and death of the
person with DLB and the initial bereavement period for the caregiver, the study will identify DLB-specific
predictors of the last 6 months of life, changes in caregiver measures that identify the last 6 months of life, and
factors which influence quality end of l...

## Key facts

- **NIH application ID:** 10028564
- **Project number:** 1R01AG068128-01
- **Recipient organization:** UNIVERSITY OF FLORIDA
- **Principal Investigator:** Melissa Jo Armstrong
- **Activity code:** R01 (R01, R21, SBIR, etc.)
- **Funding institute:** NIH
- **Fiscal year:** 2020
- **Award amount:** $694,135
- **Award type:** 1
- **Project period:** 2020-09-15 → 2025-04-30

## Primary source

NIH RePORTER: https://reporter.nih.gov/project-details/10028564

## Citation

> US National Institutes of Health, RePORTER application 10028564, Identifying Factors Predicting ACcurately End-of-Life in Dementia with Lewy Bodies and Promoting Quality End-of-Life Experiences: the PACE-DLB Study (1R01AG068128-01). Retrieved via AI Analytics 2026-05-22 from https://api.ai-analytics.org/grant/nih/10028564. Licensed CC0.

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