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

Data availability statement: The My Life Questionnaire is free to use. A printable version can be downloaded from the Living with Dementia Toolkit 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/.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.Economic and Social Research Council, National Institute for Health and Care Research (ES/L001853/2); Alzheimer's Society (348, AS-PR2-16-001)