Abstract
Optimizing the possibility to lead good lives is at the core of treatment and care for people with dementia. This may be monitored by assessing well-being and quality of life. However, cognitive impairment following dementia may complicate recall-based assessment with questionnaires, and proxy-ratings from family-caregivers do not correspond well to self-reports. Thus, using observational measures represents a potentially advanced option. Systematic reviews evaluating measurement properties, interpretability and feasibility of observational instruments assessing well-being in people living with dementia are lacking. Thus, this review performed systematic searches to find peer reviewed validated instruments of relevance in the databases MEDLINE, EMBASE, PsycINFO, Web of Science, CINAHL and ProQuest. Twenty-two instruments assessing well-being were included for evaluation of measurement properties based on the systematic approach of the COnsensus-based Standards for the selection of health Measurement INstruments (COSMIN). The evaluation included risk of bias on study level, and assessment of measurement properties on instrument level including content validity, construct validity, structural validity, internal consistency, measurement invariance, cross-cultural validity, measurement error and inter-rater/intra-rater/test–retest reliability and responsiveness. Additionally, the feasibility and interpretability of the measures were evaluated. No single instrument could be recommended based on existing publications. Thus, we provide general recommendations about further assessment and development of these instruments. Finally, we describe the most promising instruments and offer guidance with respect to their implementation and use in clinical and research contexts.
Highlights
IntroductionWell-being and quality of life (QoL) are identified as core outcomes for psychosocial interventions by people living with dementia (Øksnebjerg et al, 2018; Reilly et al, 2020), in public health initiatives (World Health Organization [WHO], 2017), national guidelines (National Institute for Health and Care Excellence [NICE], 2018), and research recommendations (Dröes et al, 2016)
Well-being and quality of life (QoL) are identified as core outcomes for psychosocial interventions by people living with dementia (Øksnebjerg et al, 2018; Reilly et al, 2020), in public health initiatives (World Health Organization [WHO], 2017), national guidelines (National Institute for Health and Care Excellence [NICE], 2018), and research recommendations (Dröes et al, 2016).Assessing Well-Being in DementiaWorld-wide, dementia is estimated to affect 50 million people (Livingston et al, 2017)
Former reviews have reported on a variety of observational measures for people living with dementia (Curyto et al, 2008), including observational instruments specific for well-being and QoL in dementia (Algar et al, 2016), and measurements of emotional expressions in dementia (Lee et al, 2019)
Summary
Well-being and quality of life (QoL) are identified as core outcomes for psychosocial interventions by people living with dementia (Øksnebjerg et al, 2018; Reilly et al, 2020), in public health initiatives (World Health Organization [WHO], 2017), national guidelines (National Institute for Health and Care Excellence [NICE], 2018), and research recommendations (Dröes et al, 2016). Dementia is defined as a public health priority, causing disability and increasing dependency on help from others in the people affected (World Health Organization [WHO], 2017). In a recent scoping review, relevant well-being domains close to the experiences of people living with dementia were defined. These domains include positive emotions, experiencing meaning, a positive sense of self and a sense of agency, having rewarding relationships with significant others, and experiencing life satisfaction (Clarke et al, 2020). The term wellbeing is used when the domains are in line with Clarke et al (2020)
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