title: Advance Care Planning in Dementia: Do Family Carers Know the Treatment Preferences of People with Early Dementia?
abstract: When a person with dementia (PWD) has lost the ability to make treatment decisions, clinicians often rely on family carers to know and articulate these preferences with assumed accuracy. This study used the Life Support Preferences Questionnaire (LSPQ) to explore whether family carers' choices show agreement with the end of life care preferences of the person with dementia for whom they care and what factors influence this.
  
  
  
  A cross-sectional study interviewing 60 dyads (a person with early dementia and preserved capacity and their family carer) each completing a modified LSPQ. We assessed how closely carers' choices resembled the PWD's preferences for treatment in three proposed health states: the here and now; severe stroke with coma; terminal cancer. Agreement between the PWD and their family carer responses was assessed using Kappa and Prevalence-Adjusted Bias-Adjusted Kappa (PABAK) statistics. We examined whether carer burden and distress, and relationship quality, influenced agreement.
  
  
  
  In interviews PWD were able to indicate their treatment preferences across all three scenarios. In the here-and-now most wanted antibiotics (98%), fewer cardio-pulmonary resuscitation (CPR) (50%) and tube feeding (47%). In severe stroke and coma antibiotics remained the more preferred treatment (88%), followed by CPR (57%) and tube feeding (30%). In advanced cancer PWD expressed lower preferences for all treatments (antibiotics 68%; CPR 50%; tube feeding 37%). Carers' choices were similar to the PWDs' preferences in the here-and-now (71% (k = 0.03; PABAK = 0.4) with less agreement for future hypothetical health states. In severe stroke and coma carers tended wrongly to suggest that the PWD preferred more intervention (antibiotic, 67%; k = -0.022; PABAK = -0.60; CPR, 73%; k = 0.20; PABAK = -0.20, tube feeding, 66%; k = 0.25; PABAK = -0.12). In advanced cancer the agreement between PWD and carers was low (antibiotics; k = -0.03; PABAK = -0.52; CPR, k = -0.07; PABAK = -0.45; tube feeding; k = 0.20; PABAK = -0.22). However, both PWD and carers showed marked uncertainty about their preferences for end of life treatment choices. Relationship quality, carer distress and burden had no influence on agreement.
  
  
  
  This study is the first to have used the LSPQ with PWD in the UK to consider treatment options in hypothetical illness scenarios. Key finding are that family carers had a low to moderate agreement with PWD on preferences for end of life treatment. This underscores how planning for care at the end of life is beset with uncertainty, even when the carer and PWD perceive the care-giving/receiving relationship is good. Families affected by dementia may benefit from early and ongoing practical and emotional support to prepare for potential changes and aid decision making in the context of the realities of care towards the end of life.
authors.affiliation: Dementia UK, Second floor, Resource for London, London, United Kingdom.
authors.forename: Karen
authors.identifier: 0000-0001-7635-644X
authors.initials: K
authors.lastname: Harrison Dening
authors.affiliation: Division of Psychiatry, Faculty of Brain Sciences, UCL, Maple House, London, United Kingdom.
authors.forename: Michael
authors.initials: M
authors.lastname: King
authors.affiliation: Marie Curie Palliative Care Research Department, UCL Division of Psychiatry, 6th Floor, Maple House, London, United Kingdom.
authors.forename: Louise
authors.initials: L
authors.lastname: Jones
authors.affiliation: Marie Curie Palliative Care Research Department, UCL Division of Psychiatry, 6th Floor, Maple House, London, United Kingdom.
authors.forename: Victoria
authors.initials: V
authors.lastname: Vickerstaff
authors.affiliation: Marie Curie Palliative Care Research Department, UCL Division of Psychiatry, 6th Floor, Maple House, London, United Kingdom.
authors.forename: Elizabeth L
authors.initials: EL
authors.lastname: Sampson
mesh_terms: D032722:Advance Care Planning; D017028:Caregivers; D003128:Coma / Q000150:complications; D003657:Decision Making; D003704:Dementia / Q000150:complications / Q000523:psychology / Q000628:therapy*; D005190:Family; D006801:Humans; D008020:Life Support Care; D009369:Neoplasms / Q000150:complications / Q000473:pathology; D057240:Patient Preference; D020521:Stroke / Q000150:complications; D011795:Surveys and Questionnaires; D035501:Uncertainty