Palliative Care for Dementia Cuts Emergency Department Visits, Hospitalizations

Greg A. Sachs, MD

Credit: Regenstrief Institute

A new study showed palliative care for dementia did not significantly improve neuropsychiatric symptoms through 24 months compared with usual care.¹ However, palliative care reduced the frequency of emergency department visits.

Investigators recognized cracks in dementia palliative care research, with many studies on dementia care management excluding or including limited patients with severe dementia and not assessing palliative care. Moreover, only a few studies focusing on palliative care included community-dwelling residents, though among those who did, patients with advanced dementia were more often to receive life-sustaining treatments than patients without dementia. Additionally, studies on palliative or dementia care included fewer participants from racial and ethnic minority groups.

The team aimed to evaluate palliative care for moderate to severe dementia, assessing its impact on dementia symptoms, caregiver depression and distress, and the frequency of emergency department visits and hospitalizations. They conducted IN-PEACE (Indiana Palliative Excellence in Alzheimer Care Efforts), a randomized clinical trial that enrolled community-dwelling patients with moderate to severe dementia and their caregivers between March 2019 and December 2020 from 2 sites in central Indiana. Participants were randomized to receive palliative or usual care.

“Typically, if patients with dementia receive palliative care they receive it very late in the course of their illness, sometimes not until they enroll in hospice in the last weeks or months of life,” said lead investigator Greg A. Sachs, MD, from Regenstrief Institute, in a statement.² “We pushed palliative care further upstream so that people could be receiving it for months to years, providing robust support to both the patient and the family and enabling them to better manage without having to go to the emergency department or the hospital.”

The primary outcome was the Neuropsychiatric Inventory (NPI-Q) severity score; greater scores indicated worse patient outcomes.¹ Secondary outcomes included Symptom Management in End-of-Life Dementia scores, caregiver depression (Patient Health Questionnaire-8) scores, caregiver distress (NPI-Q distress) scores), and combined emergency department and hospitalization events. The outcomes were assessed quarterly for 24 months—the 2-year follow-up completed by January 7, 2023—or death.

The study included 201 dyads; patients had a mean age of 83.6 years and consisted of 67.7% females and 43.3% African Americans. After 3 dyads withdrew and 83 patients died, that left 90% of the dyads eligible to complete each of the quarterly assessments.

At baseline, NPI-Q severity scores were 9.92 vs 9.41 for patients receiving palliative vs usual care, respectively. After 24 months, scores were 9.15 for patients receiving palliative care and 9.39 for those receiving usual care (between-group difference at 24 months, -0.24; 95% CI, -2.33 to 1.84). Investigators observed no significant difference in the change from baseline in NPI-Q severity between groups over time (P = .87).

African Americans, consisting of > 40% of patients and caregivers, benefited the most from palliative care. They are at a greater risk of developing dementia than their White counterparts, and yet African Americans tend to have a delay in dementia diagnoses and care.

The study also found no significant differences in the secondary outcomes, although participants receiving palliative care vs usual care had fewer combined emergency department and hospitalization events (mean events per patient, 1.06 vs 2.36; between-group difference, -1.31; 95% CI, -1.93 to -0.69; relative risk [RR], 0.45; 95% CI, 0.31 to 0.65). The study revealed that for every 100 individuals with advanced dementia treated at home, palliative care could lead to 59 fewer hospitalizations and 72 fewer emergency department visits over 2 years.

Investigators wrote how reducing emergency department or hospital visits reduces disruptive transitions, adverse events, and functional decline linked to hospitalization. The reduction of these visits may translate into large cost savings, but the team noted this needs further research.

“While we were pleased with the dramatic cut in emergency department visits and hospitalizations, we did not see a decrease in neuropsychiatric symptoms such as depression or anxiety, which we had hoped to find in the patients in our study,” Sachs said.² “This may be because the IN-PEACE care managers were available to promptly address patients’ changes in condition and suggest options other than going to an [emergency department] or a hospital, or because our patient population had a low burden of symptoms or both.”

References

1. ^{Sachs GA, Johnson NM, Gao S, Torke AM, Hickman SE, Pemberton A, Vrobel A, Pan M, West J, Kroenke K. Palliative Care Program for Community-Dwelling Individuals With Dementia and Caregivers: The IN-PEACE Randomized Clinical Trial. JAMA. 2025 Jan 29. doi: 10.1001/jama.2024.25845. Epub ahead of print. PMID: 39878993.}
2. ^{JAMA Study Integrates Palliative and Dementia Care for Patients and Caregivers. EurekAlert! January 29, 2025. https://www.eurekalert.org/news-releases/1071655. Accessed January 29, 2025.}