Feasibility, validity and reliability of the ASCOT-Proxy and ASCOT-Carer among unpaid carers of people living with dementia in England

BACKGROUND: People with dementia living at home represent a growing group of social care services users in England. Many are unable to complete questionnaires due to cognitive impairment. The ASCOT-Proxy is an adapted version of an established measure, ASCOT, which was developed as a way of collecting social care-related quality of life (SCRQoL) data from this group of service users, either alone or alongside the ASCOT-Carer, a measure of SCRQoL for unpaid carers. The ASCOT-Proxy includes two perspectives, the proxy-proxy perspective (‘My opinion: What I think’) and proxy-person perspective (‘What I think the person I represent thinks’). We aimed to establish the feasibility, construct validity and reliability of the ASCOT-Proxy and ASCOT-Carer, with unpaid carers of people with dementia living at home unable to self-report. We also aimed to establish structural characteristics of the ASCOT-Proxy. METHODS: Cross-sectional data were collected using self-administered questionnaire (paper or online) among unpaid carers living in England between January 2020 and April 2021. Unpaid carers could take part if they supported someone living with dementia who was unable to self-complete a structured questionnaire. The person living with dementia or their unpaid carer had to use at least one social care service. We used the proportion of missing data to establish feasibility, ordinal exploratory factor analysis to establish structural characteristics, Zumbo’s ordinal alpha for internal reliability, and hypothesis testing for construct validity. We also conducted Rasch analysis. RESULTS: We analysed data for 313 carers (62.4(± 12.0) years, 75.7% (N=237) females). We were able to calculate the ASCOT-Proxy-proxy overall score for 90.7% of our sample, the ASCOT-Proxy-person overall score for 88.8% of our sample and in case of the ASCOT-Carer for 99.7% of our sample. As there was an issue with structural characteristics of the ASCOT-Proxy-proxy we conducted Rasch, reliability and construct validity analysis for the ASCOT-Proxy-person and ASCOT-Carer only. CONCLUSIONS: This was a first study to explore psychometric characteristics of the ASCOT-Proxy and ASCOT-Carer with unpaid carers of people with dementia living at home unable to self-report. There are some aspects of the psychometric characteristics of the ASCOT-Proxy and ASCOT-Carer that warrant further investigation in future. Trial registration NA SUPPLEMENTARY INFORMATION: The online version contains supplementary material available at 10.1186/s12955-023-02122-0.