title: Improving end of life care for people with dementia: a rapid participatory appraisal.
abstract: OBJECTIVE
  People with dementia and their carers may experience poor end of life care, often having to navigate complex health and social care systems. The objectives of this study were to identify: (1) barriers for people with dementia and their carers in accessing good quality end of life care and (2) cost-effective ways of enabling improvements.
  
  
  METHODS
  Rapid participatory appraisal gains information from different sources across a single locality. Participants were carers of people who had died of dementia, health and social care staff. Care pathways were modelled. Barriers identified from qualitative work were triangulated with detailed case audit and economic analysis. Results were presented to the stakeholder group who generated feasible solutions.
  
  
  RESULTS
  Nine cases were audited (predominantly white British male subjects, 64-84 years with advanced dementia). Six resided at home, one in a care home and two in continuing care wards. Five died in their place of residence and four in the acute hospital. Care costs over the 6 months before death were higher in care homes or continuing care (£37 029) than for those living at home (£19 854). Synthesis of qualitative and quantitative data generated areas for improvement: patient pathway, impact of acute hospitalisation, economic costs, advance care planning, impact on carers, skills and training of health and social care staff.
  
  
  CONCLUSIONS
  This method provided evidence for stimulating change in the health and social care system. Following the patient journey and identifying barriers to care allowed local context to be considered. Service providers generated solutions enabling 'ownership' of changes to service delivery.
authors.affiliation: Dementia and Cognitive Disorders, Barnet Enfield and Haringey Mental Health Trust, London, UK.
authors.forename: Elizabeth
authors.initials: E
authors.lastname: Sampson
authors.forename: Uttara
authors.initials: U
authors.lastname: Mandal
authors.forename: Amanda
authors.initials: A
authors.lastname: Holman
authors.forename: Wendy
authors.initials: W
authors.lastname: Greenish
authors.forename: Karen Harrison
authors.initials: KH
authors.lastname: Dening
authors.forename: Louise
authors.initials: L
authors.lastname: Jones
mesh_terms: D032722:Advance Care Planning; D000368:Aged; D000369:Aged, 80 and over; D017028:Caregivers; D002983:Clinical Competence; D003365:Costs and Cost Analysis; D003643:Death; D003704:Dementia / Q000191:economics / Q000628:therapy*; D005260:Female; D006801:Humans; D008131:London; D008297:Male; D008485:Medical Audit; D008875:Middle Aged; D010343:Patient Admission / Q000191:economics / Q000706:statistics & numerical data; D012959:Socioeconomic Factors; D013727:Terminal Care / Q000191:economics / Q000941:ethics / Q000592:standards*