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Evaluating 'living well' with mild-to-moderate dementia: Co-production and validation of the IDEAL My Life Questionnaire

Clare, L.
; 
Pentecost, C.
; 
Collins, R.
; 
Martyr, A.
; 
Litherland, R.
; 
Morris, R.G.
; ; 
Gamble, L.D.
; 
Sabatini, S.
; 
Victor, C.
Publication Date
2023-10
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Keywords
Alzheimer's, Quality of life, Well-being, Satisfaction with life, Depression, Reliable change index
Rights
© The Author(s) 2023. This article is distributed under the terms of the Creative Commons Attribution 4.0 License (https://creativecommons.org/licenses/by/4.0/) which permits any use, reproduction and distribution of the work without further permission provided the original work is attributed as specified on the SAGE and Open Access page (https://us.sagepub.com/en-us/nam/open-access-at-sage).
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Peer-Reviewed
Yes
Open Access status
openAccess
Accepted for publication
2023-06-19
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Health Studies Publications
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Abstract
We aimed to co-produce and validate an accessible, evidence-based questionnaire measuring 'living well' with dementia that reflects the experience of people with mild-to-moderate dementia. Nine people with dementia formed a co-production group. An initial series of workshops generated the format of the questionnaire and a longlist of items. Preliminary testing with 53 IDEAL cohort participants yielded a shortlist of items. These were tested with 136 IDEAL cohort participants during a further round of data collection and assessed for reliability and validity. The co-production group contributed to decisions throughout and agreed the final version. An initial list of 230 items was reduced to 41 for initial testing, 12 for full testing, and 10 for the final version. The 10-item version had good internal consistency and test-retest reliability, and a single factor structure. Analyses showed significant large positive correlations with scores on measures of quality of life, well-being, and satisfaction with life, and expected patterns of association including a significant large negative association with depression scores and no association with cognitive test scores. The co-produced My Life Questionnaire is an accessible and valid measure of 'living well' with dementia suitable for use in a range of contexts.
URI
http://hdl.handle.net/10454/19571
Version
Published version
Citation
Clare L, Pentecost C, Victor C et al (2023) Evaluating 'living well' with mild-to-moderate dementia: Co-production and validation of the IDEAL My Life Questionnaire. Dementia. 22(7): 1548-1566.
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Link to Version of Record
https://doi.org/10.1177/14713012231188502
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Article
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