Assessing Momentary Well-Being in People Living With Dementia: A Systematic Review of Observational Instruments

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.

Development of the Observable Well-Being in Living With Dementia-Scale

“…We believe OWLS is a promising instrument for assessing the process of well-being during music therapy, solving issues present in other existing observational instruments 24 OWLS is created to be an easily adaptable instrument for a variety of psychosocial interactional interventions. In future studies we recommend assessing construct validity through correlations with adequate self-reported instruments measuring momentary well-being, 6 , 61 in larger samples and other relevant contexts.…”

“…The literature search was conducted in MEDLINE, EMBASE, PsycINFO, Web of Science, CINAHL, ProQuest Psychology and ProQuest Nursing and Allied Health April 21 st 2020 and repeated April 06 th 2021, using a combination of the words “well-being“, “dementia“, “observation“, “measurement“, and “psychometric properties”. 24 Theoretical and conceptual models of momentary well-being was acquired through hand searching of publications of instruments or reviews on this topic. Qualitative research including the view of people living with dementia was consulted to ensure relevance and comprehensiveness of the items of the instrument.…”

“…23 This will often lead to infrequent and skewed ratings that do not fit well with a range of statistical approaches. 24 Algar et al 18 recommended the Greater Cincinnati Chapter Well-Being Observational Tool (GCWBT), but recent publications have demonstrated a lack of structural validity and low reliability in this instrument. 25,26 Lawton's 27 widely cited model of well-being and quality of life in dementia suggests a two-factor model of positive and negative emotions.…”