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Meaningful Self-Reporting Of Quality Of Life In People Living With Dementia

Abstract

The aim of this research study is to investigate the hypothesis that people living with dementia can comment meaningfully on their quality of life. A careful literature review revealed that “while it is generally agreed that any appraisal of quality of life should as far as possible rely on the individual’s own perspective, having people with dementia evaluate their own quality of life remains a much-debated issue” although the findings of many recent studies support the theory that people with dementia can evaluate their own quality of life (Cahill et al., 2004, p. 313). A 32-question questionnaire adapted from the Dementia Quality of Life scale (Brod, Stewart, Sands, & Walton, 1999) was administered to nine elder participants with dementia. A family caregiver and a professional caregiver also completed the Quality of Life Scale to reflect how they thought the elder with dementia experienced quality of life. Analysis indicated high inter-item consistency across all items and respondents on the Quality of Life Scale (α = 0.957). Correlations between respondents (participants and informal and formal caregivers) on most subscales were high (τ = .040 to .717) (although correlations often did not reach statistical significance with N = 9), further affirming that the ratings of Quality of Life by participants with dementia were as valid as the ratings of those who knew them and their lives best. The findings provide evidence that comments about quality of life made by people living with dementia can be regarded as meaningful, indicating that this population deserves greater respect regarding their ability to be included in decisions regarding their well-being and quality of life

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