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UK end-of-life care services in dementia, initiatives and sustainability: results of a national online survey
  1. Sarah Amador1,
  2. Claire Goodman2,
  3. Louise Robinson3 and
  4. Elizabeth L Sampson1
  5. for the SEED Research Team
  1. 1Marie Curie Palliative Care Research Department, Division of Psychiatry, University College London, London, UK
  2. 2Centre for Research in Primary and Community Care, University of Hertfordshire, Hatfield, UK
  3. 3Newcastle University Institute for Ageing and Institute for Health and Society, Newcastle University, Newcastle upon Tyne, UK
  1. Correspondence to Dr Elizabeth L Sampson, Marie Curie Palliative Care Research Department, Division of Psychiatry, University College London, 6/F Maple House, 149 Tottenham Court Road, London W1T 7NF, UK; e.sampson{at}


Background People living and dying with non-cancer diagnoses, including dementia, have poorer access to generalist and specialist palliative care than people with cancer, and experience worse outcomes in terms of pain and symptom control, and quality and experience of care. In the UK, the National Council for Palliative Care (NCPC) ran a national survey of services for end-of-life care for people with dementia (2008) in which 16 services were identified, and reported on case studies and examples of good practice. We updated the NCPC survey to review progress in previously identified services, identify factors that lead to sustainable services and identify new initiatives in this area of care.

Methods An online survey was developed and piloted before use. Initiatives were contacted via targeted (N=63) and open call invitations. The survey was made up of 5 sections. Quantitative data were analysed using descriptive statistics.

Results 15 services responded. They engaged in a wide range of activities predominately providing direct care (80%) and workforce development/advisory or educational activities (87%). Results suggest that sustainability of services is reliant on clinicians with a leadership role and wider system support through funding mechanisms and a minimum level of integration within normal service provision.

Conclusions Recent initiatives are largely built on the expertise of the nursing profession (with or without input from medical consultants), and driven mainly by the charity and hospice sector. This has generated a potential new model of care provision in end of life dementia care, ‘Hospice-enabled Dementia Care’.

  • Dementia
  • Health Services
  • Sustainability

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  • Contributors SA, CG, LR and ELS made substantial contributions to the conception or design of the work. SA and ELS acquired, analysed and interpreted the data. SA, CG, LR and ELS drafted the work and revised it critically for important intellectual content. SA, CG, LR and ELS gave final approval of the version to be published and agree to be accountable for all aspects of the work.

  • Funding This article presents independent research funded by the National Institute for Health Research (NIHR) under its Programme Grants for Applied Research Programme (Reference Number RP-PG-0611–20005).

  • Disclaimer The views expressed are those of the author(s) and not necessarily those of the NHS, the NIHR or the Department of Health.

  • Competing interests None declared.

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