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.
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.
| Original language | English |
|---|---|
| Article number | 105888 |
| Number of pages | 7 |
| Journal | Journal of the American Medical Directors Association |
| Volume | 26 |
| Issue number | 12 |
| DOIs | |
| Publication status | Published - Dec 2025 |
Keywords
- Humans
- Nursing Homes
- Dementia
- Netherlands
- Terminal Care/standards
- Retrospective Studies
- Male
- Female
- Quality of Health Care
- Aged
- Aged, 80 and over
- Family/psychology
- End-of-life care
- palliative care