title: Dying with dementia: the views of family caregivers about quality of life.
abstract: OBJECTIVE
  To document the views of family caregivers of persons with dementia about quality of life for their relative during the late and terminal stages of the disease, as part of an exploratory study of best quality care and support.
  
  
  METHODS
  Fifteen former caregivers (five wives, five husbands, two sons, three daughters) participated in in-depth semistructured interviews.
  
  
  RESULTS
  Participants identified three main sets of indicators of quality of life: the physical body, the physical and social environment and treatment with respect and dignity. The constructs 'quality of life' and 'quality of care' tended to be conflated in the experience of caregivers. An important role for caregivers was to interpret and represent the subjective experience of the person with dementia.
  
  
  CONCLUSIONS
  Quality of life needs to be understood from multiple perspectives. Caregivers' views are a central part of this understanding and should be used to inform future research and service development.
authors: Faculty of Health Sciences, University of Sydney, Sydney, New South Wales, Australia. c.russell@usyd.edu.au
authors: Cherry
authors: C
authors: Russell
authors: Heather
authors: H
authors: Middleton
authors: Chris
authors: C
authors: Shanley
mesh_terms: D000368:Aged; D000369:Aged, 80 and over; D000375:Aging / Q000502:physiology; D001293:Attitude to Death; D017028:Caregivers / Q000523:psychology*; D003704:Dementia / Q000175:diagnosis / Q000401:mortality / Q000628:therapy*; D005195:Family Relations; D005260:Female; D015577:Geriatric Assessment; D006701:Home Nursing / Q000379:methods / Q000523:psychology; D006801:Humans; D007407:Interviews as Topic; D008297:Male; D008875:Middle Aged; D009517:New South Wales; D011788:Quality of Life; D012144:Respite Care / Q000458:organization & administration; D018570:Risk Assessment; D012803:Sick Role; D013315:Stress, Psychological; D011795:Surveys and Questionnaires; D013727:Terminal Care / Q000379:methods / Q000523:psychology; D013997:Time Factors