title: Care at the end of life for people with dementia living in a care home: a qualitative study of staff experience and attitudes.
abstract: OBJECTIVE
  The aim of this study is to examine barriers and facilitators to care home staff delivering improved end-of-life care for people with dementia.
  
  
  METHODS
  Individual qualitative interviews of 58 staff in a 120-bed nursing home where the staff and the residents' religion differed were carried out. Interviews continued until a maximum variation sample was achieved and theoretical saturation was reached.
  
  
  RESULTS
  The staff felt warmly towards the residents and felt they could recognise when they were near death. Care staff, nurses and doctors did not see themselves as a team and communicated poorly with relatives about approaching death. The staff used opaque euphemisms and worried about being blamed. They were often unaware of or had concerns about the validity of advance care plans. They knew of the religious rituals around death but frequently misunderstood religious tradition.
  
  
  CONCLUSIONS
  The staff require education and support about discussing and implementing plans around care at the end of life in dementia and about cultural issues around death to improve practice. This would enable the staff to implement advance care plans, knowing that they will be supported. Education would encompass communicating the complicated, unpredictable path of dementia near the time of death explicitly but sensitively, including recognising that people often do not hear difficult messages and are unable to take on large quantities of information at once. The staff need to know about the resident's religious and cultural ideas as well as ritual practice.
authors.affiliation: Mental Health Sciences, UCL, London, UK. g.livingston@ucl.ac.uk
authors.forename: Gill
authors.initials: G
authors.lastname: Livingston
authors.forename: Catherine
authors.initials: C
authors.lastname: Pitfield
authors.forename: Jackie
authors.initials: J
authors.lastname: Morris
authors.forename: Monica
authors.initials: M
authors.lastname: Manela
authors.forename: Elanor
authors.initials: E
authors.lastname: Lewis-Holmes
authors.forename: Hannah
authors.initials: H
authors.lastname: Jacobs
mesh_terms: D000328:Adult; D000368:Aged; D001291:Attitude of Health Personnel; D003142:Communication; D003704:Dementia / Q000451:nursing*; D005260:Female; D007722:Health Knowledge, Attitudes, Practice; D006801:Humans; D007400:Interprofessional Relations; D008297:Male; D008875:Middle Aged; D009735:Nursing Homes / Q000592:standards*; D010347:Patient Care Planning / Q000592:standards; D036301:Qualitative Research; D011795:Surveys and Questionnaires; D013727:Terminal Care / Q000592:standards*