# D-CARE End of Life Study

> **NIH NIH RF1** · UNIVERSITY OF OKLAHOMA HLTH SCIENCES CTR · 2024 · $2,303,477

## Abstract

Several dementia care management models have been developed to comprehensively meet the
needs of the growing number of Americans living with dementia and their caregivers. In 2018,
the Patient-Centered Outcomes Research Institute and National Institute on Aging funded the
Dementia Care Study (D-CARE), a 4-site pragmatic, comparative effectiveness randomized
clinical trial to compare clinical outcomes of a health system-based dementia care program
(HSDC), a community-based dementia care program (CBDC), and usual care. Final data
collection was completed for 2,176 D-CARE participants (persons living with dementia and their
family or friend caregivers) on August 21, 2023.
The proposed study seeks to leverage data collected in D-CARE to examine end-of-life care for
persons living with dementia (PLWD)—outcomes not included in the original trial. Little is known
about the effect of dementia care management on end-of-life care among community-dwelling
persons with dementia. This study aims to compare by intervention arm (HSDC vs. CBDC): 1)
documentation and content of PLWD advance care preferences (e.g., resuscitation, intubation,
artificial nutrition preferences); 2) overall end-of-life care quality in the last 30 days of life,
including symptom management, communication about treatment decisions, and receipt of care
aligned with PLWD’s goals; and 3) health care use in the last 6 months of life, specifically
hospice use, ED visits and hospitalizations, and total cost of care. This study will also consider
the effect of intervention group on location of death, time spent at home in the last 6 months of
life, and potentially burdensome care interventions or care transitions in the last 90 days of life.
The large number of decedents in the D-CARE trial (N=524, 24% of enrolled) provides a unique
opportunity to study how community-dwelling PLWD die and compare end-of-life outcomes
between the two dementia care management interventions. Completion of these new aims will
provide greater insight into how best to care for PLWD near the end of life, including information
about end-of-life care preferences, met or unmet care needs near death, and healthcare
utilization in the last 6 months of life.

## Key facts

- **NIH application ID:** 10985268
- **Project number:** 1RF1AG089510-01
- **Recipient organization:** UNIVERSITY OF OKLAHOMA HLTH SCIENCES CTR
- **Principal Investigator:** lee alexandra jennings
- **Activity code:** RF1 (R01, R21, SBIR, etc.)
- **Funding institute:** NIH
- **Fiscal year:** 2024
- **Award amount:** $2,303,477
- **Award type:** 1
- **Project period:** 2024-09-01 → 2027-08-31

## Primary source

NIH RePORTER: https://reporter.nih.gov/project-details/10985268

## Citation

> US National Institutes of Health, RePORTER application 10985268, D-CARE End of Life Study (1RF1AG089510-01). Retrieved via AI Analytics 2026-05-24 from https://api.ai-analytics.org/grant/nih/10985268. Licensed CC0.

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