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Improved end-of-life care for patients with dementia: greater family satisfaction and possibly greater end-of-life comfort


van der Steen, Jenny T., van Soest-Poortvliet, Mirjam C., Gijsberts, Marie-José H. E., Onwuteaka-Philipsen, Bregje D., Achterberg, Wilco P., Ribbe, Miel W., Deliens, Luc, de Vet, Henrica C. W.


Nederlands Tijdschrift Voor Geneeskunde, Volume: 157, No.: 17, Pages.: A5324-A5324

Year of Publication



Objective: To analyse possible trends in families’ evaluations of the quality of end-of-life care and the quality of dying in dementia.; Design: Analysis of individual patient data from 3 studies (2 solely retrospective (after death) and 1 partly prospective).; Method: We combined data on 372 residents with dementia from 38 nursing homes and 13 residential homes (‘psychogeriatric’ wards) over the period 2005-2010. Outcome measures were the End-of-Life in Dementia-Satisfaction With Care scale (EOLD-SWC; range: 10-40) to assess quality of, or satisfaction with, end-of-life care, and the EOLD-Comfort Assessment in Dying scale (EOLD-CAD; range: 12-42) to assess quality of dying (comfort). Regression analyses were performed with time (trend) as an independent factor and were adjusted for clustering of residents within homes. We also adjusted for differences between residents, homes, and study designs.; Results: We found a consistent trend of increasing family satisfaction with end-of-life care over the years (unadjusted: 0.5 points per year increment on the EOLD-SWC, and adjusted: 1.2 points; mean total score: 32.4 (SD: 5.3)). Results for the EOLD-CAD scale (mean: 32.2 (SD: 5.7)) were inconclusive; only the exclusively retrospective data indicated increased comfort. Item- and subscale-level analyses showed that, in particular, families were more satisfied with general (comfort) measures for residents and the emotional support provided for families; further, families reported lower levels of emotional distress in residents.; Conclusion: We found a positive trend of increased satisfaction with end-of-life care. Families also reported a possible increase in residents’ end-of-life comfort. Ongoing surveillance of outcomes measuring end-of-life quality is important in view of the increasing healthcare budget constraints.;


aged, aged, 80 and over, alzheimer disease, dementia, female, humans, middle aged, mortality, nursing homes, patient satisfaction, psychology, quality of health care, quality of life, standards, statistics & numerical data, terminal care

Countries of Study


Types of Dementia

Dementia (general / unspecified)

Types of Study


Type of Outcomes

Quality of Life of Person With Dementia, Satisfaction with care/services


Long Term Residential Care without medically trained staff, Nursing Homes

Type of Interventions

End of Life Care

End of Life Care

Palliative Care