How Is Quality of Life Assessed in People With Dementia? A Systematic Literature Review and a Primer for...

Purpose The purpose of this study was to determine how quality of life (QoL) is measured in people with dementia involved in interventions designed to improve well-being and to explore how those measures align with principles of person-centered care. Method A systematic literature review was conducted utilizing PsychInfo, CINAHL, and PubMed and combinations of the search terms: "dementia," "outcome measure," "creative engagement," "creative intervention," "TimeSlips," "art," "quality of life," and "well-being." The search was limited to studies published in peer-reviewed journals that reported outcomes for people with dementia in response to a creative intervention. Results Across the 24 reviewed studies, 30 different outcome measures were reported including eight self-reported, nine observational, and 13 proxy-reported measures. Self-report of QoL was elicited 16 times, observational measures were reported 17 times, and proxy-reported measures were used 28 times. All measures were used with participants across the dementia severity spectrum. Conclusion Current clinical practice of QoL evaluation does not align well with person-centered care principles of self-determination based on the low proportion of self-report. The previously reported limitations of proxy-report have been in part confirmed with this study. Implications of the findings for speech-language pathologists are discussed.