title: A systematic review of barriers and facilitators to and interventions for proxy decision-making by family carers of people with dementia.
abstract: BACKGROUND
  Relatives of people with dementia report that proxy decision-making is difficult and distressing. We systematically reviewed the literature about barriers and facilitators to family carers of people with dementia making proxy decisions, and interventions used to facilitate their decision-making.
  
  
  METHODS
  We searched electronic databases and references of included papers up to February 2014. Two authors independently evaluated study quality using a checklist.
  
  
  RESULTS
  We included the 30/104 papers from our search which fitted predetermined criteria and prioritized higher quality papers. Family carers report that proxy decision-making is challenging and can be distressing, especially when decisions are made against the wishes of the care recipient and support from healthcare professionals is lacking. Decision-specific manualized aids have been developed, and while results for those supporting decisions about respite and percutaneous endoscopic gastrostomy (PEG) feeding have shown promising results in pilot trials, no intervention has yet been shown to significantly reduce decisional conflict or carer burden, or increase knowledge in randomized controlled trials; a decision aid for advance care planning increased decisional conflict.
  
  
  CONCLUSIONS
  We recommend development and testing of decision aids targeting the decisions carers report finding most distressing, including those around where people should live, accessing services, and end of life treatments. Being provided with information to make decisions which have not previously been considered may increase feelings of conflict, suggesting these aids should be carefully targeted.
authors: Division of Psychiatry,University College London (UCL),63-73 Riding House Street,W1W 7EJ London,UK.
authors: Kathryn
authors: K
authors: Lord
authors: Division of Psychiatry,University College London (UCL),63-73 Riding House Street,W1W 7EJ London,UK.
authors: Gill
authors: G
authors: Livingston
authors: Division of Psychiatry,University College London (UCL),63-73 Riding House Street,W1W 7EJ London,UK.
authors: Claudia
authors: C
authors: Cooper
mesh_terms: D017028:Caregivers / Q000523:psychology; D003657:Decision Making; D003704:Dementia / Q000523:psychology / Q000628:therapy*; D006801:Humans; D019727:Proxy / Q000523:psychology
keywords: carers; dementia; proxy decision-making