title: UK end-of-life care services in dementia, initiatives and sustainability: results of a national online survey.
abstract: 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'.
authors.affiliation: Marie Curie Palliative Care Research Department, Division of Psychiatry, University College London, London, UK.
authors.forename: Sarah
authors.initials: S
authors.lastname: Amador
authors.affiliation: Centre for Research in Primary and Community Care, University of Hertfordshire, Hatfield, UK.
authors.forename: Claire
authors.initials: C
authors.lastname: Goodman
authors.affiliation: Newcastle University Institute for Ageing and Institute for Health and Society, Newcastle University, Newcastle upon Tyne, UK.
authors.forename: Louise
authors.initials: L
authors.lastname: Robinson
authors.affiliation: Marie Curie Palliative Care Research Department, Division of Psychiatry, University College London, London, UK.
authors.forename: Elizabeth L
authors.initials: EL
authors.lastname: Sampson
mesh_terms: D003704:Dementia / Q000451:nursing*; D064946:Hospice and Palliative Care Nursing / Q000379:methods / Q000458:organization & administration*; D006801:Humans; D010166:Palliative Care / Q000379:methods / Q000458:organization & administration*; D015397:Program Evaluation; D011795:Surveys and Questionnaires; D013727:Terminal Care / Q000379:methods / Q000458:organization & administration*; D006113:United Kingdom
keywords: Dementia; Health Services; Sustainability