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

Lookup NU author(s): Dr Laura GambleORCiD

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This work is licensed under a Creative Commons Attribution 4.0 International License (CC BY 4.0).

Abstract

© 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.

Publication metadata

Author(s): Clare L, Pentecost C, Collins R, Martyr A, Litherland R, Morris RG, Quinn C, Gamble LD, Sabatini S, Victor C

Publication type: Article

Publication status: Published

Journal: Dementia

Year: 2023

Volume: 22

Issue: 7

Pages: 1548-1566

Print publication date: 01/10/2023

Online publication date: 12/07/2023

Acceptance date: 02/04/2018

Date deposited: 09/08/2023

ISSN (print): 1471-3012

ISSN (electronic): 1741-2684

Publisher: SAGE Publications Ltd

URL: https://doi.org/10.1177/14713012231188502

DOI: 10.1177/14713012231188502

Data Access Statement: The My Life Questionnaire is free to use. A printable version can be downloaded from the Living with DementiaToolkit https://livingwithdementiatoolkit.org.uk/home/how-are-you-feeling-today/or via this link https://medicine.exeter.ac.uk/reach/publications/. Requests for further information about the IDEAL My Life Questionnaire may be directed to IDEAL@exeter.ac.uk. IDEAL cohort data were deposited with the UK Data Archive in April 2020. Details of how to access the data can be found here: https://reshare.ukdataservice.ac.uk/854293/.14

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