D-CARE End of Life Study

NIH RePORTER · NIH · RF1 · $2,303,477 · view on reporter.nih.gov ↗

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
UNIVERSITY OF OKLAHOMA HLTH SCIENCES CTR
Principal Investigator
lee alexandra jennings
Activity code
RF1
Funding institute
NIH
Fiscal year
2024
Award amount
$2,303,477
Award type
1
Project period
2024-09-01 → 2027-08-31