title: End of life care: The experiences of advance care planning amongst family caregivers of people with advanced dementia - A qualitative study.
abstract: BACKGROUND
  End of life decisions for people with advanced dementia are reported as often being difficult for families as they attempt to make appropriate and justified decisions.
  
  
  OBJECTIVE
  To explore the experiences of advance care planning amongst family caregivers of people with advanced dementia.
  
  
  METHODS
  Qualitative research including a series of single cases (close family relatives).
  
  
  METHODS
  A purposive sample of 12 family caregivers within a specialist dementia unit was interviewed about their experiences of advance care planning between August 2009 and February 2010.
  
  
  RESULTS
  Family caregivers need encouragement to ask the right questions during advance care planning to discuss the appropriateness of nursing and medical interventions at the end of life.
  
  
  CONCLUSIONS
  Advance care planning can be facilitated with the family caregiver in the context of everyday practice within the nursing home environment for older people with dementia.
authors.affiliation: Faculty of Education, Health and Community, Liverpool John Moores University, Liverpool, United Kingdom s.e.ashton@ljmu.ac.uk.
authors.forename: Susan Elizabeth
authors.initials: SE
authors.lastname: Ashton
authors.affiliation: Evidence-based Practice Research Centre, Faculty of Health & Social Care, Edge Hill University, Ormskirk, United Kingdom.
authors.forename: Brenda
authors.initials: B
authors.lastname: Roe
authors.affiliation: Evidence-Based Practice Research Centre (EPRC), Faculty of Health and Social Care, Edge Hill University, Ormskirk, United Kingdom.
authors.forename: Barbara
authors.initials: B
authors.lastname: Jack
authors.affiliation: Centre for Public Services Management, Liverpool John Moores University, Liverpool Business School, Liverpool, United Kingdom.
authors.forename: Bob
authors.initials: B
authors.lastname: McClelland
mesh_terms: D000328:Adult; D032722:Advance Care Planning; D000368:Aged; D000369:Aged, 80 and over; D017028:Caregivers / Q000523:psychology*; D003657:Decision Making; D003704:Dementia / Q000523:psychology*; D005260:Female; D006801:Humans; D008297:Male; D008875:Middle Aged; D036301:Qualitative Research; D013727:Terminal Care / Q000523:psychology*
keywords: advance care planning; dementia; end of life care; family caregivers; nursing home