Measuring the well-being of people with dementia : a conceptual scoping review

Clarke, Chris; Woods, Bob; Moniz-Cook, Esme; Mountain, Gail; Øksnebjerg, Laila; Chattat, Rabih; Diaz, Ana; Gove, Dianne; Vernooij-Dassen, Myrra; Wolverson, Emma

Abstract

Background: Enabling people with dementia to ‘live well’ is a policy and research priority in many countries. However, instruments for measuring outcomes of psychosocial interventions designed to promote well-being in dementia are often derived from a symptom-focused, loss/deficit approach, or from broad quality of life concepts. A pan-European dementia working group called for research on the development of an alternative asset/strengths-based conceptual framework of well-being in dementia. This paper takes forward this recommendation by developing such a framework and using this to map relevant self-report outcome measures.
Methods: Three scoping reviews of published studies were conducted iteratively. First, we examined the literature on lived experiences of well-being and quality of life in people with dementia and then the wider dementia literature for application of well-being constructs. The synthesised findings generated conceptual domains of well-being in people with dementia. Corresponding self-report instruments used in dementia research were scoped, categorised within the conceptual framework and their potential value in measuring outcomes for people with dementia was then examined.
Findings: Six conceptual domains for the measurement of well-being and 35 self-report instruments that have been used with people with dementia were identified. Six instruments were developed specifically for people with dementia, five were derived from the gerontological literature and 24 from the well-being literature. Fifteen instruments and one sub-scale have been examined for psychometric properties. To date, twenty have been used as outcome measures, with seven showing change over time. A number of identified instruments utilise traditional retrospective Likert-scaling formats, limiting their potential for use with some groups of people with dementia.
Conclusion: An assets/strengths-based framework is presented, outlining structural domains for selecting self-report measures of well-being in people with dementia. It provides a foundation for enhancing research on processes and outcomes of psychosocial interventions, including instrument development, more precise matching of intervention aims with outcome measurement, and newer technology-based ‘in-the-moment’ measurement.
Key words: dementia; outcome measurement; well-being; quality of life; positive psychology; successful aging; lived experience

Citation

Clarke, C., Woods, B., Moniz-Cook, E., Mountain, G., Øksnebjerg, L., Chattat, R., Diaz, A., Gove, D., Vernooij-Dassen, M., & Wolverson, E. (in press). Measuring the well-being of people with dementia : a conceptual scoping review. Health and quality of life outcomes, 18(1), Article 249. https://doi.org/10.1186/s12955-020-01440-x

• Journal Article Type: Review
• Acceptance Date: Jun 3, 2020
• Online Publication Date: Jul 24, 2020
• Deposit Date: Jun 5, 2020
• Publicly Available Date: Jun 8, 2020
• Journal: Health and Quality of Life Outcomes
• Print ISSN: 1477-7525
• Publisher: Springer Verlag
• Peer Reviewed: Peer Reviewed
• Volume: 18
• Issue: 1
• Article Number: 249
• DOI: https://doi.org/10.1186/s12955-020-01440-x
• Keywords: Dementia; Outcome measurement; Well-being; Quality of life; Positive psychology; Successful aging; Lived experience
• Public URL: https://hull-repository.worktribe.com/output/3515965