Palliative Care Program for Community-Dwelling Individuals With Dementia and Caregivers
Authors: Sachs Greg A. , Johnson Nina M. , Gao Sujuan , Torke Alexia M. , Hickman Susan E. , Pemberton Amy , Vrobel Andrea , Pan Minmin , West Jennifer , Kroenke Kurt 
Published: January 2025

Importance

Care management benefits community-dwelling patients with dementia, but studies include few patients with moderate to severe dementia or from racial and ethnic minority populations, lack palliative care, and seldom reduce health care utilization.

Objective

To determine whether integrated dementia palliative care reduces dementia symptoms, caregiver depression and distress, and emergency department (ED) visits and hospitalizations compared with usual care in moderate to severe dementia.

Design, Setting, and Participants

A randomized clinical trial of community-dwelling patients with moderate to severe dementia and their caregivers enrolled from March 2019 to December 2020 from 2 sites in central Indiana (2-year follow-up completed on January 7, 2023). Electronic health record screening identified patients with dementia; caregivers confirmed eligibility, including dementia stage.

Intervention

The intervention consisted of monthly calls from a trained nurse or social worker and evidence-based protocols to help caregivers manage patients’ neuropsychiatric symptoms, caregiver distress, and palliative care issues (eg, advance care planning, symptoms, and hospice) (n = 99). Usual care caregivers received written dementia resource information and patients received care from usual clinicians (n = 102).

Main Outcomes and Measures

The primary outcome was Neuropsychiatric Inventory Questionnaire (NPI-Q) severity score (scores range from 0-36, with higher scores indicating worse patient symptoms). 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 ED and hospitalization events. Outcomes were assessed quarterly for 24 months or until patient death.

Results

A total of 201 dyads were enrolled (patients were 67.7% female; 43.3% African American; mean [SD] age, 83.6 [7.9] years); 3 dyads withdrew and 83 patients died over the course of the study, with at least 90% of eligible dyads in both groups completing each of the quarterly assessments. For the dementia palliative care vs usual care groups, mean NPI-Q severity scores were 9.92 vs 9.41 at baseline and 9.15 vs 9.39 at 24 months, respectively (between-group difference at 24 months, −0.24 [95% CI, −2.33 to 1.84]). There was no significant difference in the rate of change in NPI-Q severity from baseline between groups over time (P = .87 for the group and time interaction). There were no significant differences in the secondary outcomes, except that there were fewer combined ED and hospitalization events in the dementia palliative care group (mean events/patient, 1.06 in dementia palliative care vs 2.37 in usual care; between-group difference, −1.31 [95% CI, −1.93 to −0.69]; relative risk, 0.45 [95% CI, 0.31 to 0.65]).

Conclusions and Relevance

Among community-dwelling patients with moderate to severe dementia and their caregivers, dementia palliative care, compared with usual care, did not significantly improve patients’ neuropsychiatric symptoms through 24 months.

Trial Registration

ClinicalTrials.gov Identifier: NCT03773757