Quality of life in dementia: a systematically conducted narrative review of dementia-specific measurement scales

Objectives: Ascertaining the quality of life (QoL) in people with dementia is important for evaluating service outcomes and cost-effectiveness. This paper identifies QoL measures for people with dementia and assesses their properties. Method: A systematic narrative review identified articles using dementia QoL measures. Electronic databases searched were AMED, CINAHL, EMBASE, Index to Theses, IBSS, MEDLINE, PsycINFO, Sociological Abstracts, and Web of Science. All available years and languages (if with an English language abstract) were included. Results: Searches yielded 6806 citations; 3043 were multiple duplicates (759 being true duplicates). Abstracts were read; 182 full papers were selected/obtained, of which 126 were included as relevant. Few measures were based on rigorous conceptual frameworks. Some referenced Lawton's model (Dementia Quality of Life [DQOL] and Quality of Life in Alzheimer's Disease [QOL-AD]), though these tapped part of this only; others claimed relationship to a health-related QoL concept (e.g. DEMQOL), though had less social relevance; others were based on limited domains (e.g. activity, affect) or clinical opinions (Quality of Life in Late-Stage Dementia [QUALID]). Many measures were based on proxy assessments or observations of people with dementia's QoL, rather than their own ratings. The Bath Assessment of Subjective Quality of Life in Dementia (BASQID) was developed involving people with dementia and caregivers, but excluded some of their main themes. All measures were tested on selective samples only (ranging from community to hospital clinics, or subsamples/waves of existing population surveys), in a few sites. Their general applicability remains unknown, and predictive validity remains largely untested. Conclusion: The lack of consensus on measuring QoL in dementia suggests a need for a broader, more rigorously tested QoL measure.