title: Context, mechanisms and outcomes in end of life care for people with advanced dementia.
abstract: BACKGROUND
  The majority of people with dementia in the UK die in care homes. The quality of end of life care in these environments is often suboptimal. The aim of the present study was to explore the context, mechanisms and outcomes for providing good palliative care to people with advanced dementia residing in UK care homes from the perspective of health and social care providers.
  
  
  METHODS
  The design of the study was qualitative which involved purposive sampling of health care professionals to undertake interactive interviews within a realist framework. Interviews were completed between September 2012 and October 2013 and were thematically analysed and then conceptualised according to context, mechanisms and outcomes. The settings were private care homes and services provided by the National Health Service including memory clinics, mental health and commissioning services in London, United Kingdom. The participants included 14 health and social care professionals including health care assistants, care home managers, commissioners for older adults' services and nursing staff.
  
  
  RESULTS
  Good palliative care for people with advanced dementia is underpinned by the prioritisation of psychosocial and spiritual care, developing relationships with family carers, addressing physical needs including symptom management and continuous, integrated care provided by a multidisciplinary team. Contextual factors that detract from good end of life care included: an emphasis on financial efficiency over person-centred care; a complex health and social care system, societal and family attitudes towards staff; staff training and experience, governance and bureaucratisation; complexity of dementia; advance care planning and staff characteristics. Mechanisms that influence the quality of end of life care include: level of health care professionals' confidence, family uncertainty about end of life care, resources for improving end of life care and supporting families, and uncertainty about whether dementia specific palliative care is required.
  
  
  CONCLUSIONS
  Contextual factors regarding the care home environment may be obdurate and tend to negatively impact on the quality of end of life dementia care. Local level mechanisms may be more amenable to improvement. However, systemic changes to the care home environment are necessary to promote consistent, equitable and sustainable high quality end of life dementia care across the UK care home sector.
authors.affiliation: Marie Curie Palliative Care Research Department, Division of Psychiatry, University College London, 6th Floor, Maple House, 149 Tottenham Court Road, London, W1T 7NF, UK. N.Kupeli@ucl.ac.uk.
authors.forename: Nuriye
authors.initials: N
authors.lastname: Kupeli
authors.affiliation: Bamford Centre for Mental Health & Wellbeing, University of Ulster, Londonderry, UK.
authors.forename: Gerard
authors.initials: G
authors.lastname: Leavey
authors.affiliation: Marie Curie Palliative Care Research Department, Division of Psychiatry, University College London, 6th Floor, Maple House, 149 Tottenham Court Road, London, W1T 7NF, UK.
authors.forename: Kirsten
authors.initials: K
authors.lastname: Moore
authors.affiliation: Marie Curie Palliative Care Research Department, Division of Psychiatry, University College London, 6th Floor, Maple House, 149 Tottenham Court Road, London, W1T 7NF, UK.
authors.forename: Jane
authors.initials: J
authors.lastname: Harrington
authors.affiliation: Division of Psychiatry, University College London, Londonderry, UK.
authors.forename: Kathryn
authors.initials: K
authors.lastname: Lord
authors.affiliation: Division of Psychiatry, University College London, Londonderry, UK.
authors.forename: Michael
authors.initials: M
authors.lastname: King
authors.affiliation: Department of Primary Care & Population Health, University College London, Londonderry, UK.
authors.forename: Irwin
authors.initials: I
authors.lastname: Nazareth
authors.affiliation: Marie Curie Palliative Care Research Department, Division of Psychiatry, University College London, 6th Floor, Maple House, 149 Tottenham Court Road, London, W1T 7NF, UK.|Barnet Enfield and Haringey Mental Health Trust Liaison Psychiatry Team, St. Anns Hospital, London, UK.
authors.forename: Elizabeth L
authors.initials: EL
authors.lastname: Sampson
authors.affiliation: Marie Curie Palliative Care Research Department, Division of Psychiatry, University College London, 6th Floor, Maple House, 149 Tottenham Court Road, London, W1T 7NF, UK.
authors.forename: Louise
authors.initials: L
authors.lastname: Jones
mesh_terms: D000328:Adult; D032722:Advance Care Planning; D003704:Dementia / Q000401:mortality* / Q000451:nursing; D005260:Female; D006801:Humans; D008131:London; D008297:Male; D008875:Middle Aged; D009735:Nursing Homes / Q000592:standards; D010347:Patient Care Planning; D063868:Patient Outcome Assessment; D036301:Qualitative Research; D013727:Terminal Care / Q000379:methods* / Q000706:statistics & numerical data*
keywords: Care homes; Dementia; Palliative care; Qualitative research; Realist framework