TY - JOUR
T1 - Family-Perceived Quality of End-of-Life Care and Quality of Dying Among Dutch Nursing Home Residents With Dementia
T2 - 2005–2024 Trends
AU - Schotvanger, Naomi
AU - Klapwijk, Maartje S.
AU - Biesmans, Jesper M.A.
AU - Bolt, Sascha R.
AU - Meijers, Judith M.M.
AU - van der Steen, Jenny T.
N1 - Publisher Copyright:
© 2025 The Author(s).
PY - 2025/12/1
Y1 - 2025/12/1
N2 - 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.
AB - 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.
KW - Dementia
KW - end-of-life care
KW - nursing homes
KW - palliative care
U2 - 10.1016/j.jamda.2025.105888
DO - 10.1016/j.jamda.2025.105888
M3 - Article
SN - 1525-8610
VL - 26
JO - Journal of the American Medical Directors Association
JF - Journal of the American Medical Directors Association
IS - 12
M1 - 105888
ER -