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Title: Evaluating ‘living well’ with mild-to-moderate dementia: Co-production and validation of the IDEAL My Life Questionnaire
Authors: Clare, L
Pentecost, C
Collins, R
Martyr, A
Litherland, R
Morris, RG
Quinn, C
Gamble, LD
Sabatini, S
Victor, C
Keywords: Alzheimer’s;quality of life;well-being;satisfaction with life;depression;reliable change index
Issue Date: 12-Jul-2023
Publisher: SAGE Publications
Citation: Clare, L. et al. (2023) 'Evaluating ‘living well’ with mild-to-moderate dementia: Co-production and validation of the IDEAL My Life Questionnaire', Dementia, 22 (7), pp. 1548 - 1566. doi: 10.1177/14713012231188502.
Abstract: Copyright © The Author(s) 2023. Objectives: 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. Methods: 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. Results: 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. Conclusions: 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.
Description: Data availability statement: The My Life Questionnaire is free to use. A printable version can be downloaded from the Living with Dementia Toolkit or via this link Requests for further information about the IDEAL My Life Questionnaire may be directed to IDEAL cohort data were deposited with the UK Data Archive in April 2020. Details of how to access the data can be found here:
ISSN: 1471-3012
Other Identifiers: ORCID iD: Linda Clare
ORCID iD: Claire Pentecost
ORCID iD: Rachel Collins
ORCID iD: Anthony Martyr
ORCID iD: Robin G Morris
ORCID iD: Catherine Quinn
ORCID iD: Laura D Gamble
ORCID iD: Serena Sabatini
ORCID iD: Christina Victor
Appears in Collections:Dept of Health Sciences Research Papers

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