title: End of life care for community dwelling older people with dementia: an integrated review.
abstract: OBJECTIVE
  To review the evidence for end-of-life care for community dwelling older people with dementia (including those resident in care homes).
  
  
  METHODS
  An integrated review synthesised the qualitative and quantitative evidence on end-of-life care for community dwelling older people with dementia. English language studies that focused on prognostic indicators for end-of-life care, assessment, support/relief, respite and educational interventions for community dwelling older people with dementia were included. A user representative group informed decisions on the breadth of literature used. Each study selected was screened independently by two reviewers using a standardised check list.
  
  
  RESULTS
  Sixty eight papers were included. Only 17% (12) exclusively concerned living and dying with dementia at home. Six studies included direct evidence from people with dementia. The studies grouped into four broad categories: Dementia care towards the end of life, palliative symptom management for people with dementia, predicting the approach of death for people with dementia and decision-making. The majority of studies were descriptive. The few studies that developed dementia specific tools to guide end of life care and outcome measures specific to improve comfort and communication, demonstrated what could be achieved, and how much more needs to be done.
  
  
  CONCLUSIONS
  Research on end-of-life care for people with dementia has yet to develop interventions that address the particular challenges that dying with dementia poses. There is a need for investigation of interventions and outcome measures for providing end-of-life care in the settings where the majority of this population live and die.
authors.affiliation: Centre for Research in Primary and Community Care, University of Hertfordshire, Hatfield, UK. c.goodman@herts.ac.uk
authors.forename: Claire
authors.initials: C
authors.lastname: Goodman
authors.forename: Catherine
authors.initials: C
authors.lastname: Evans
authors.forename: Jane
authors.initials: J
authors.lastname: Wilcock
authors.forename: Katherine
authors.initials: K
authors.lastname: Froggatt
authors.forename: Vari
authors.initials: V
authors.lastname: Drennan
authors.forename: Elizabeth
authors.initials: E
authors.lastname: Sampson
authors.forename: Martin
authors.initials: M
authors.lastname: Blanchard
authors.forename: Maggie
authors.initials: M
authors.lastname: Bissett
authors.forename: Steve
authors.initials: S
authors.lastname: Iliffe
mesh_terms: D000368:Aged; D000369:Aged, 80 and over; D003657:Decision Making; D003704:Dementia / Q000451:nursing* / Q000628:therapy; D019317:Evidence-Based Medicine; D005260:Female; D016330:Frail Elderly; D006707:Homes for the Aged; D006801:Humans; D057187:Independent Living; D008297:Male; D010166:Palliative Care / Q000458:organization & administration / Q000592:standards; D013727:Terminal Care / Q000458:organization & administration / Q000592:standards