Enhancing our understanding of measuring quality of life of people with dementia who are unable to self-report

People with dementia living at home represent a growing group of social care services users. Therefore, it is important to understand their outcome needs, the impact of care on their quality of life (QoL) and how community based social care services may best support them. However, it may be difficult to collect such information from people who have memory or communication difficulties, including people with moderate to severe dementia. To work around this, an adapted version of the ASCOT questionnaire, ASCOT-Proxy, has been developed. This is completed on behalf of a person by someone who knows them well – such as, a close friend or relative (unpaid carers). The aim of the present study was to understand whether ASCOT-Proxy is easy to complete and measure what it is intended to measure – that is, social care-related QoL (SCRQoL), which is defined as aspects of people’s lives that might be affected by the use of social care services. The data collection is still ongoing and will be finalised by April 2021. Unpaid carers have been invited through NHS settings, the Join Dementia Research, carers’ and other organisations and through social media. Preliminary analysis (n=141, 81.56% (115) females; mean age: 59.3years) indicates that ASCOT-Proxy is a feasible, valid and reliable measure of SCRQoL. There is also a difference between proxy report perspectives. Without the right tool we would be unable to tell what the needs of people with dementia, unable to self-report are or how effectively community-based social care services support them.