title: Nursing home residents dying with dementia in Flanders, Belgium: a nationwide postmortem study on clinical characteristics and quality of dying.
abstract: OBJECTIVE
  There is a lack of large-scale, nationwide data describing clinical characteristics and quality of dying of nursing home residents dying with dementia. We set out to investigate quality of end-of-life care and quality of dying of nursing home residents with dementia in Flanders, Belgium.
  
  
  METHODS
  To obtain representativity, we conducted a postmortem study (2010) using random cluster sampling. In selected nursing homes, all deceased residents with dementia in a period of 3 months were reported. For each case, a structured questionnaire was filled in by the nurse most involved in care, the family physician, and the nursing home administrator. We used the Cognitive Performance Scale and Global Deterioration Scale to assess dementia. Main outcome measures were health status, clinical complications, symptoms at the end of life, and quality of dying.
  
  
  METHODS
  Health status, clinical complications, symptoms at the end of life, and quality of dying.
  
  
  RESULTS
  We identified 198 deceased residents with dementia in 69 nursing homes (58% response rate). Age distribution was the same as all deceased residents with dementia in Flanders, 2010. Fifty-four percent had advanced dementia. In the last month of life, 95.5% had 1 or more sentinel events (eg, eating/drinking problems, febrile episodes, or pneumonia); most frequently reported symptoms were pain, fear, anxiety, agitation, and resistance to care. In the last week, difficulty swallowing and pain were reported most frequently. Pressure sores were present in 26.9%, incontinence in 89.2%, and cachexia in 45.8%. Physical restraints were used in 21.4% of cases, and 10.0% died outside the home. Comparing stages of dementia revealed few differences between groups regarding clinical complications, symptoms, or quality of dying.
  
  
  CONCLUSIONS
  Regardless of the dementia stage, many nursing home residents develop serious clinical complications and symptoms in the last phase of life, posing major challenges to the provision of optimum end-of-life care.
authors.affiliation: End-of-Life Care Research Group, Ghent University & Vrije Universiteit Brussel, Brussels, Belgium. An.Vandervoort@vub.ac.be
authors.forename: An
authors.initials: A
authors.lastname: Vandervoort
authors.forename: Lieve
authors.initials: L
authors.lastname: Van den Block
authors.forename: Jenny T
authors.initials: JT
authors.lastname: van der Steen
authors.forename: Ladislav
authors.initials: L
authors.lastname: Volicer
authors.forename: Robert
authors.initials: R
authors.lastname: Vander Stichele
authors.forename: Dirk
authors.initials: D
authors.lastname: Houttekier
authors.forename: Luc
authors.initials: L
authors.lastname: Deliens
mesh_terms: D000368:Aged; D000369:Aged, 80 and over; D000402:Airway Obstruction / Q000453:epidemiology; D001007:Anxiety / Q000453:epidemiology; D001530:Belgium / Q000453:epidemiology; D002100:Cachexia / Q000453:epidemiology; D003430:Cross-Sectional Studies; D003680:Deglutition Disorders / Q000453:epidemiology; D003681:Dehydration / Q000453:epidemiology; D003704:Dementia / Q000401:mortality*; D005242:Fecal Incontinence / Q000453:epidemiology; D005260:Female; D006801:Humans; D008297:Male; D009735:Nursing Homes; D010146:Pain / Q000453:epidemiology; D003668:Pressure Ulcer / Q000453:epidemiology; D011595:Psychomotor Agitation / Q000453:epidemiology; D011787:Quality of Health Care; D012149:Restraint, Physical / Q000706:statistics & numerical data; D012189:Retrospective Studies; D011795:Surveys and Questionnaires; D013727:Terminal Care; D019452:Terminally Ill; D014549:Urinary Incontinence / Q000453:epidemiology