Developing an easy-read version of the ASCOT (Adult Social Care Outcomes Toolkit) for older adults accessing social care

Over half a million older people in the UK are supported by publicly-funded social care services. These services help with day-to-day living in people’s own homes, in care/nursing homes and other settings. The Adult Social Care Outcomes Toolkit (ASCOT; www.pssru.ac.uk/ascot) was developed to measure the social care related quality of life (SCRQoL) of adults using social care services (Netten et al, 2012) has been widely used to measure the impact of social care on the quality of life of people supported (Rand et al, 2017). However, some older people find standard questionnaires difficult to complete due memory problems, and other dementia-related challenges (Aznar et al, 2021).

The aim of this study was to enable more older people to complete the questionnaire themselves, so that they can tell care providers, policy makers and researchers how they feel about social care services they receive. A group of older people, primarily those living with dementia, and their supporters/carers came together as a ‘working group’ to adapt an existing version of the toolkit for this age group. The new version was then cognitively tested (Meadows, 2021) with people living with dementia supported by social care services (N=25). 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 a number of ways.