title: Awareness of dementia by family carers of nursing home residents dying with dementia: a post-death study.
abstract: BACKGROUND
  High-quality palliative care for people with dementia should be patient-centered, family-focused, and include well-informed and shared decision-making, as affirmed in a recent white paper on dementia from the European Association for Palliative Care.
  
  
  OBJECTIVE
  To describe how often family carers of nursing home residents who died with dementia are aware that their relative has dementia, and study resident, family carer, and care characteristics associated with awareness.
  
  
  METHODS
  Post-death study using random cluster sampling.
  
  
  METHODS
  Structured questionnaires were completed by family carers, nursing staff, and general practitioners of deceased nursing home residents with dementia in Flanders, Belgium (2010).
  
  
  RESULTS
  Of 190 residents who died with dementia, 53.2% of family carers responded. In 28% of cases, family carers indicated they were unaware their relative had dementia. Awareness by family carers was related to more advanced stages of dementia 1 month before death (odds ratio = 5.4), with 48% of family carers being unaware when dementia was mild and 20% unaware when dementia was advanced. The longer the onset of dementia after admission to a nursing home, the less likely family carers were aware (odds ratio = 0.94).
  
  
  CONCLUSIONS
  Family carers are often unaware that their relative has dementia, that is, in one-fourth of cases of dementia and one-fifth of advanced dementia, posing considerable challenges for optimal care provision and end-of-life decision-making. Considering that family carers of residents who develop dementia later after admission to a nursing home are less likely to be aware, there is room for improving communication strategies toward family carers of nursing home residents.
authors.affiliation: End-of-Life Care Research Group, Vrije Universiteit Brussel (VUB) & Ghent University, Brussels, Belgium ypenders@vub.ac.be.
authors.forename: Yolanda W H
authors.initials: YW
authors.lastname: Penders
authors.affiliation: End-of-Life Care Research Group, Vrije Universiteit Brussel (VUB) & Ghent University, Brussels, Belgium.
authors.forename: Gwenda
authors.initials: G
authors.lastname: Albers
authors.affiliation: End-of-Life Care Research Group, Vrije Universiteit Brussel (VUB) & Ghent University, Brussels, Belgium EMGO Institute for Health and Care Research, VU University Medical Center, Amsterdam, The Netherlands.
authors.forename: Luc
authors.initials: L
authors.lastname: Deliens
authors.affiliation: End-of-Life Care Research Group, Vrije Universiteit Brussel (VUB) & Ghent University, Brussels, Belgium Heymans Institute of Pharmacology, Ghent University, Ghent, Belgium.
authors.forename: Robert
authors.initials: R
authors.lastname: Vander Stichele
authors.affiliation: End-of-Life Care Research Group, Vrije Universiteit Brussel (VUB) & Ghent University, Brussels, Belgium.
authors.forename: Lieve
authors.initials: L
authors.lastname: Van den Block
mesh_terms: D001364:Awareness; D001530:Belgium / Q000453:epidemiology; D017028:Caregivers / Q000523:psychology*; D003430:Cross-Sectional Studies; D003704:Dementia / Q000401:mortality* / Q000451:nursing*; D005260:Female; D006801:Humans; D008297:Male; D008875:Middle Aged; D009735:Nursing Homes; D010166:Palliative Care; D012189:Retrospective Studies; D011795:Surveys and Questionnaires
keywords: Dementia; end-of-life; family caregivers; nursing homes