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Barriers to providing end-of-life care for people with dementia: a whole-system qualitative study
  1. Karen Harrison Dening1,
  2. Wendy Greenish2,
  3. Louise Jones3,
  4. Uttara Mandal4 and
  5. Elizabeth L Sampson3
  1. 1Dementia UK, London, UK
  2. 2Marie Curie Cancer Care, London, UK
  3. 3Marie Curie Palliative Care Research Unit, UCL Mental Health Sciences Unit, London, UK
  4. 4Department of Old Age Psychiatry, Central and North West London NHS Foundation Trust, Park Royal Centre for Mental Health, 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}ucl.ac.uk

Abstract

Objectives People with dementia may experience poor quality end-of-life care. The complex health and social care system may not meet their needs. The authors' objectives were to identify perceived and real barriers that prevent people with dementia and their carers receiving end-of-life care of acceptable quality.

Methods A whole-system qualitative study as part of a rapid participatory appraisal. The authors used semistructured interviews and focus groups with recently bereaved family carers of a person with dementia and a wide range of health and social care staff (50 participants). Thematic content analysis was used to analyse data and to identify barriers.

Results Five areas were identified as barriers to providing good end-of-life care: impact of hospitalisation, care pathways, advance care planning, impact on carers, staff skills and training. A wide range of health and social professionals provided end-of-life care to people with dementia but with little coordination or knowledge of each other's activity or remit. Care was fragmented and ad hoc leading to crises and inappropriate hospital admissions. Staff lacked confidence and requested more training. Many of the identified barriers were underpinned by feelings of uncertainty regarding disease trajectory and the perceived futility of interventions. Areas of good practice were specialist nurse support to family carers and ‘in reach’ to nursing homes.

Conclusions Qualitative methods of service evaluation facilitated a broader and deeper understanding of a range of perspectives, which, with other components of rapid participatory appraisal, generated potential solutions to improve care.

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  • Received 30 November 2011.
  • Accepted 21 January 2012.
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Footnotes

  • Funding This work was supported through core funding to the Marie Curie Palliative Care Research Unit from Marie Curie Cancer Care (UK).

  • Competing interests None.

  • Ethics approval This study was approved by the Barnet Enfield and Haringey Mental Health Trust.

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

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