title: [Improved end-of-life care for patients with dementia: greater family satisfaction and possibly greater end-of-life comfort].
abstract: OBJECTIVE
  To analyse possible trends in families' evaluations of the quality of end-of-life care and the quality of dying in dementia.
  
  
  METHODS
  Analysis of individual patient data from 3 studies (2 solely retrospective (after death) and 1 partly prospective).
  
  
  METHODS
  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.
  
  
  CONCLUSIONS
  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.
authors.affiliation: VU medisch centrum, EMGO Instituut voor onderzoek naar gezondheid en zorg, Amsterdam, the Netherlands. j.vandersteen@vumc.nl
authors.forename: Jenny T
authors.initials: JT
authors.lastname: van der Steen
authors.forename: Mirjam C
authors.initials: MC
authors.lastname: van Soest-Poortvliet
authors.forename: Marie-José  H E
authors.initials: MJ
authors.lastname: Gijsberts
authors.forename: Bregje D
authors.initials: BD
authors.lastname: Onwuteaka-Philipsen
authors.forename: Wilco P
authors.initials: WP
authors.lastname: Achterberg
authors.forename: Miel W
authors.initials: MW
authors.lastname: Ribbe
authors.forename: Luc
authors.initials: L
authors.lastname: Deliens
authors.forename: Henrica C W
authors.initials: HC
authors.lastname: de Vet
mesh_terms: D000368:Aged; D000369:Aged, 80 and over; D000544:Alzheimer Disease; D003704:Dementia / Q000401:mortality / Q000523:psychology*; D005260:Female; D006801:Humans; D008875:Middle Aged; D009735:Nursing Homes / Q000706:statistics & numerical data*; D017060:Patient Satisfaction; D011787:Quality of Health Care; D011788:Quality of Life; D013727:Terminal Care / Q000523:psychology* / Q000592:standards