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- Publisher
- SAGE
- Copyright
- © The Author(s) 2023
- ISSN
- 1533-3175
- eISSN
- 1938-2731
- DOI
- 10.1177/15333175231177668
- Publisher site
- See Article on Publisher Site
Abstract
A valid measure of quality of life is important for clinical goal setting and for evaluating interventions. In the amnestic dementias, proxy-raters (e.g. friends, families, clinicians) typically rate quality of life lower than the self-ratings given by the person with dementia – a proxy bias. This study investigated whether the same proxy bias occurs in Primary Progressive Aphasia (PPA), a language-led dementia.Quality of life was measured in 18 individuals with PPA using self-ratings, and proxy-ratings by their main communication partner, using the Quality of Life in Alzheimer’s Disease Scale.There was no strong evidence for proxy bias at a group level, with no consistent pattern across dyads, where proxy- and self-ratings did not show good levels of agreement. We suggest that self-ratings and proxy-ratings of quality of life in PPA are not interchangeable. Higher-powered investigation of the patterns observed here is warranted in future studies.
Journal
American Journal of Alzheimer s Disease & Other Dementias® – SAGE
Published: May 15, 2023
Keywords: dementia; aphasia; primary progressive aphasia; wellbeing; quality of life; proxy; ratings