Family-perceived quality of end-of-life care and quality of dying among Dutch nursing home residents with dementia: 2005-2024 Trends

Abstract

Objectives: Family ratings of quality of end-of-life (EOL) care increased up to 2019 in a previous study on Dutch nursing home residents with dementia, while quality of dying did not. This study examines if these trends have continued based on newly collected data (2019-2024). Design: Retrospective observational cohort study. Setting and Participants: Data (2005-2024) were combined from 8 studies involving 1588 bereaved family members of Dutch nursing home residents. Methods: The End-of-Life in Dementia-Satisfaction with Care (EOLD-SWC; range 10-40) and the EOLD -Comfort Assessment in Dying (EOLD-CAD; 4 subscales; total score range 14-42) were used to measure bereaved family-perceived quality of EOL care and dying. Mixed models were used to analyze trends over time, with EOLD-SWC and EOLD-CAD scores as the dependent variables, and time of death as an independent variable. A quadratic term and spline analysis were applied to assess nonlinearity. Results: EOLD-SWC scores increased significantly by 0.117 points per year (CI, 0.042 to 0.192), reaching an estimated 34.4 points by 2024, with a substantial increase in the early years. In contrast, EOLD-CAD total scores remained stable. The dying symptoms subscale increased (0.038 points per year; CI, 0.006 to 0.071) whereas the well-being subscale declined (-0.033 points per year; CI,-0.062 to-0.003) with a sharper decline initially. Subscale scores for "Physical distress" and "Emotional distress" were unchanged. Conclusions and Implications: Over 18 years, trends in family-perceived quality of EOL care for people with dementia have improved. However, the quality of dying diverged, and 2 subscales changed in opposite directions with a significant decline in the well-being subscale and an increase in the dying symptoms subscale. Future research should explore well-being and expectations over time of what constitutes a "good death" in dementia and palliative care interventions to effectively improve quality of dying. (c) 2025 The Author(s). Published by Elsevier Inc. on behalf of Post-Acute and Long-Term Care Medical Association. This is an open access article under the CC BY license (http://creativecommons.org/licenses/ by/4.0/).