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Measuring the well-being of people with dementia: a conceptual scoping review
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...
Autores principales: | , , , , , , , , , |
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Formato: | Online Artículo Texto |
Lenguaje: | English |
Publicado: |
BioMed Central
2020
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Materias: | |
Acceso en línea: | https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7382062/ https://www.ncbi.nlm.nih.gov/pubmed/32709238 http://dx.doi.org/10.1186/s12955-020-01440-x |
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author | Clarke, Chris Woods, Bob Moniz-Cook, Esme Mountain, Gail Øksnebjerg, Laila Chattat, Rabih Diaz, Ana Gove, Dianne Vernooij-Dassen, Myrra Wolverson, Emma |
author_facet | Clarke, Chris Woods, Bob Moniz-Cook, Esme Mountain, Gail Øksnebjerg, Laila Chattat, Rabih Diaz, Ana Gove, Dianne Vernooij-Dassen, Myrra Wolverson, Emma |
author_sort | Clarke, Chris |
collection | PubMed |
description | 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 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 amongst people with dementia. To date, 20 have been used as outcome measures, with seven measuring change over time. A number of identified instruments utilise traditional retrospective Likert-scaling response 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 into 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. |
format | Online Article Text |
id | pubmed-7382062 |
institution | National Center for Biotechnology Information |
language | English |
publishDate | 2020 |
publisher | BioMed Central |
record_format | MEDLINE/PubMed |
spelling | pubmed-73820622020-07-27 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 Health Qual Life Outcomes Review 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 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 amongst people with dementia. To date, 20 have been used as outcome measures, with seven measuring change over time. A number of identified instruments utilise traditional retrospective Likert-scaling response 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 into 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. BioMed Central 2020-07-24 /pmc/articles/PMC7382062/ /pubmed/32709238 http://dx.doi.org/10.1186/s12955-020-01440-x Text en © The Author(s) 2020 Open AccessThis article is licensed under a Creative Commons Attribution 4.0 International License, which permits use, sharing, adaptation, distribution and reproduction in any medium or format, as long as you give appropriate credit to the original author(s) and the source, provide a link to the Creative Commons licence, and indicate if changes were made. The images or other third party material in this article are included in the article's Creative Commons licence, unless indicated otherwise in a credit line to the material. If material is not included in the article's Creative Commons licence and your intended use is not permitted by statutory regulation or exceeds the permitted use, you will need to obtain permission directly from the copyright holder. To view a copy of this licence, visit http://creativecommons.org/licenses/by/4.0/. The Creative Commons Public Domain Dedication waiver (http://creativecommons.org/publicdomain/zero/1.0/) applies to the data made available in this article, unless otherwise stated in a credit line to the data. |
spellingShingle | Review Clarke, Chris Woods, Bob Moniz-Cook, Esme Mountain, Gail Øksnebjerg, Laila Chattat, Rabih Diaz, Ana Gove, Dianne Vernooij-Dassen, Myrra Wolverson, Emma Measuring the well-being of people with dementia: a conceptual scoping review |
title | Measuring the well-being of people with dementia: a conceptual scoping review |
title_full | Measuring the well-being of people with dementia: a conceptual scoping review |
title_fullStr | Measuring the well-being of people with dementia: a conceptual scoping review |
title_full_unstemmed | Measuring the well-being of people with dementia: a conceptual scoping review |
title_short | Measuring the well-being of people with dementia: a conceptual scoping review |
title_sort | measuring the well-being of people with dementia: a conceptual scoping review |
topic | Review |
url | https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7382062/ https://www.ncbi.nlm.nih.gov/pubmed/32709238 http://dx.doi.org/10.1186/s12955-020-01440-x |
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