Co-designing an Easy-Read Measure of Care-Related Quality of Life: Reflections on involving people living with dementia and their supporters

One in 11 people over the age of 65 have dementia in the UK. As their dementia progresses some will need support from social care services to continue living lives of quality. The Alzheimer’s Society estimates that 60% of people receiving homecare live with dementia. Care-related quality of life, measured by the Adult Social Care Outcomes Toolkit (ASCOT; www.pssru.ac.uk/ascot), is an outcome measure used internationally as an indicator of care quality. However, some older people find standard questionnaires difficult to complete due memory problems and other dementia-related challenges; this means their views and experiences may be excluded or never captured (Aznar et al, 2021).

We co-produced an ‘easy read’ version of the Adult Social Care Outcomes Toolkit (ASCOT), a questionnaire used to measure how social care affects people’s quality of life, together with a working group of 8 older people, primarily those living with dementia and their supporters/carers. Changes made by the working group were tested in cognitive interviews with 25 older social care users who would normally struggle with standard questionnaires. We iterated this process over 6 Working Group meetings and 3 rounds of cognitive testing. The final version of the adapted toolkit is substantially different from the standard version.

Drawing on accounts of working group members, this presentation will focus on the process and results of involving people living with dementia and their carers/supporters in iteratively developing the new version of the tool. Not only is it achievable to successfully involve people living with dementia in the co-design of self-report outcome measures, but also people living with dementia and their supporters/carers find the process beneficial in a number of ways.