title: Preferences for end-of-life care: a nominal group study of people with dementia and their family carers.
abstract: BACKGROUND
  The wishes and preferences of people with dementia should inform decisions on future care. However, such decisions are often left to family carers and may not reflect those the person with dementia would have made for themselves. We know little about what influences agreement between people with dementia and their carers.
  
  
  OBJECTIVE
  To explore whether people with dementia and their carers were able to generate and prioritise preferences for end-of-life care. We examined whether carers influenced the choices made by the persons with dementia.
  
  
  METHODS
  Nominal group technique.
  
  
  METHODS
  People with dementia (n = 6), carers (n = 5) and dyads of people with dementia and carers (n = 6) attending memory assessment services.
  
  
  METHODS
  Three modified nominal group technique groups were conducted in five stages: (1) silent generation of ideas, (2) discussion, (3) further generation of ideas, (4) discussion and themeing and (5) ranking. The discussions were recorded, transcribed and analysed for thematic content using NVIVO8.
  
  
  RESULTS
  Quality of care, family contact, dignity and respect were ranked as significant themes by all groups. The analysis of transcripts revealed three main themes: quality of care, independence and control and carer burden. People with dementia had difficulty considering their future selves. Carers wanted much control at the end of life, raising issues of assisted dying and euthanasia.
  
  
  CONCLUSIONS
  Wishes and preferences of people with dementia and their family carers may differ. To ensure the wishes of people with dementia are respected, their views should be ascertained early in the disease before their ability to consider the future is compromised.
authors.affiliation: Dementia UK, London, UK. Karen.harrison-dening@dementiauk.org
authors.forename: Karen H
authors.initials: KH
authors.lastname: Dening
authors.forename: Louise
authors.initials: L
authors.lastname: Jones
authors.forename: Elizabeth L
authors.initials: EL
authors.lastname: Sampson
mesh_terms: D032722:Advance Care Planning; D000368:Aged; D000369:Aged, 80 and over; D017028:Caregivers / Q000523:psychology*; D003704:Dementia / Q000523:psychology / Q000628:therapy; D005190:Family / Q000523:psychology*; D005260:Female; D006801:Humans; D008297:Male; D057240:Patient Preference; D013727:Terminal Care / Q000523:psychology