Co‐Designing an Easy‐Read Adult Social Care Outcomes Measure for Older People: Approach to and Reflections on Involving People Living With Dementia and Their Supporters

Background

In the UK, over half a million older people rely on publicly funded social care services to support their daily living needs. It is crucial to measure the quality of these services to ensure they meet the needs of those they support. The Adult Social Care Outcomes Toolkit (ASCOT) was developed to assess social care-related quality of life (SCRQoL; Netten et al., 2012). However, many older individuals, particularly those living with dementia, face difficulties completing standard questionnaires (Aznar et al., 2021).

Aim

This project aimed to enhance the accessibility of the ASCOT toolkit for older people, enabling more people to self-report their experiences of social care.

Methods

We employed a co-design methodology, bringing together a working group of older adults, primarily those living with dementia, along with their carers/supporters, to adapt the ASCOT toolkit. The adaptation process involved six working group meetings. In between these meetings, three rounds of cognitive testing (Meadows, 2021) with 25 participants who had difficulties completing traditional questionnaires also took place, with findings brought back to the working group after each round, so they could further refine the toolkit in light of cognitive testing results.

Results

The final adapted version of the ASCOT toolkit differs significantly from the original. The cognitive testing results demonstrate a considerable reduction in challenges experienced by participants between testing rounds, indicating a more accessible and user-friendly tool.

Implications

The findings from this project demonstrate that co-designing outcome measures with older people, particularly those living with dementia, is both feasible and impactful. This work offers a replicable model for creating inclusive, accessible tools that amplify the voices of service users.

Patient and Public Involvement

8 older people, including those living with dementia, have co-designed the new version of the tool over 6 meetings. Further meetings took place to jointly design dissemination materials. Working group members have co-presented project findings at conferences and events, and two members have co-authored this article. PPI were involved from the funding acquisition stage of this project. Two PPI members who were not part of the working group were part of the project steering group.