title: Does the quality of life construct as illustrated in quantitative measurement tools reflect the perspective of people with dementia?
abstract: OBJECTIVE
  A discussion of the extent to which people with dementia's perspectives on quality of life have been included in quantitative research.
  
  
  BACKGROUND
  Capturing the perspective of people with dementia may improve understanding of their quality of life. Quantitative tools to assess quality of life exist, but the extent to which these reflect the perspective of people with dementia has not been evaluated.
  
  
  METHODS
  A discussion paper.
  
  
  METHODS
  Ten tools (designed between 1992-2012) to measure quality of life from the perspective of people with dementia were located from existing reviews.
  
  
  CONCLUSIONS
  Each tool was rated according to the extent to which the developers included the perspectives of people with dementia at three different points of quality of life conceptualization: during quality of life assessment, to identify quality of life domains and to define an overall conceptual framework. This analysis demonstrates that tool developers were inconsistent in their approach to including the perspectives of people with dementia to understand quality of life. The perspective of people with dementia was included primarily to assess, but not to select domains or define overall quality of life.
  
  
  CONCLUSIONS
  Nurses should consider not only who assesses quality of life, but also whose understanding of quality of life is being assessed.
  
  
  CONCLUSIONS
  It is unclear whether the quantitative quality of life literature reflects the perspective of people with dementia. Debate is needed regarding the impact of this issue on the lives of people with dementia.
authors.affiliation: Daphne Cockwell School of Nursing, Ryerson University, Toronto, Ontario, Canada.
authors.forename: Hannah M
authors.initials: HM
authors.lastname: O'Rourke
authors.affiliation: Faculty of Nursing Level 3, Edmonton Clinic Health Academy, University of Alberta, Edmonton, Alberta, Canada.
authors.forename: Kimberly D
authors.initials: KD
authors.lastname: Fraser
authors.affiliation: Faculty of Nursing Level 3, Edmonton Clinic Health Academy, University of Alberta, Edmonton, Alberta, Canada.
authors.forename: Wendy
authors.initials: W
authors.lastname: Duggleby
mesh_terms: D002170:Canada; D003704:Dementia / Q000503:physiopathology*; D006801:Humans; D011788:Quality of Life
keywords: cognitive impairment; dementia; nursing professional issues; patient perspectives; quality of life; subjectivity