BMJ Support Palliat Care 2:108-114 doi:10.1136/bmjspcare-2011-000177
  • Research

Improving end of life care for people with dementia: a rapid participatory appraisal

  1. Louise Jones3
  1. 1Dementia and Cognitive Disorders, Barnet Enfield and Haringey Mental Health Trust, London, UK
  2. 2Department of Old Age Psychiatry, Central and North West London NHS Foundation Trust, London, UK
  3. 3Marie Curie Palliative Care Research Unit, UCL Mental Health Sciences Unit, University College London, London, UK
  4. 4Marie Curie Cancer Care, London, UK
  5. 5Dementia UK, London, UK
  1. Correspondence to Dr Elizabeth L Sampson, Marie Curie Palliative Care Research Unit, UCL Mental Health Sciences Unit, Charles Bell House, 67-73 Riding House Street, London W1W 7EJ, UK; e.sampson{at}
  1. Contributors ELS, WG, LJ and KHD devised and managed the study. All authors contributed to data collection, analysis, interpretation and writing of the final draft.


Objectives 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.


  • Competing interests None.

  • Ethics approval Approval provided by the Barnet Enfield and Haringey Mental Health Trust.

  • Provenance and peer review Not commissioned; externally peer reviewed.

  • Received 30 November 2011.
  • Accepted 17 February 2012.
  • Published Online First 31 March 2012

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