LIVING WELL WITH DEMENTIA: A SYSTEMATIC REVIEW

Abstract

Current policy emphasises the importance of living well with dementia, but there has been no synthesis of the factors related to quality of life (QoL), subjective well-being or life satisfaction in people with dementia. We aimed to examine the available evidence in a systematic review and meta-analysis. We searched Pubmed, CINAHL, Web of Science, PsycNET, AgeInfo, Zetoc, Social Care Online, and OpenGrey to January 7th 2016 for studies investigating factors associated with QoL, well-being and life satisfaction in dementia. Articles had to provide quantitative data and include ≥75% people with dementia of any type or severity. Results from intervention studies were excluded. Correlational estimated effect size was employed. We included 213 individual studies reported in 307 articles that reported QoL (n=205), well-being (n=5) and life satisfaction (n=3) outcomes. Meta-analysis was possible for 198 QoL studies taken from 272 articles. Separate analyses were conducted for each method of assessing QoL: self-rating by the person with dementia, informant rating by a family carer or health care professional, and proxy rating by a family carer or health care professional. A further analysis focused on factors associated with differences between parallel self- and informant ratings. Longitudinal studies were examined separately to identify baseline predictors at follow-up. Demographic and disease characteristics were largely unrelated to QoL. Many factors were significantly associated but effect sizes were often small or negligible, with only a few moderate associations. Factors reflecting relationships, social engagement and functional ability were associated with better QoL. Factors indicative of poorer physical and mental health were associated with poorer QoL, as were factors indicative of poorer carer well-being. Longitudinal evidence about predictors of QoL was limited. There was considerable between-study heterogeneity. Efforts to improve QoL could focus on supporting relationships, social engagement and everyday functioning, addressing poor physical and mental health, and ensuring high-quality care. However, longitudinal evidence is needed to clarify causal relationships and identify ways of maintaining or improving QoL over time. The pattern of numerous predominantly small associations with QoL suggests a need to reconsider approaches to understanding and assessing living well with dementia.