Does the quality of life construct as illustrated in quantitative measurement tools reflect the perspective of people with dementia?

Abstract

Aims: 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.

Design: A discussion paper.

Data sources: Ten tools (designed between 1992-2012) to measure quality of life from the perspective of people with dementia were located from existing reviews.

Discussion: 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.

Implications for nursing: Nurses should consider not only who assesses quality of life, but also whose understanding of quality of life is being assessed.

Conclusion: 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.

Keywords: cognitive impairment; dementia; nursing professional issues; patient perspectives; quality of life; subjectivity.