Social care-related quality of life of people with dementia and their carers in England.

Abstract

People with dementia and their carers are a growing subgroup of people who use community‐based social care. These services are designed to maintain people's quality of life while living at home. The ASCOT measure of social care‐related quality of life (SCRQoL), designed to evaluate quality and effectiveness of social care, has been adapted for proxy‐report when someone is unable to self‐report. The ASCOT‐Carer has been developed to measure carer's own SCRQoL. This study sought to establish the factors related to SCRQoL of people living with dementia (PLWD, proxy‐reported by carers) and their carers. Data were collected via a self‐administered postal or online survey of 313 carers in England, from January 2020 to April 2021. Carers were eligible if they supported someone living with dementia at home, who was unable to self‐complete questionnaires. The person living with dementia or their carer had to use at least one social care service, e.g. home care. We recruited participants via an online volunteer panel and NHS sites. Multiple regression was applied to explore the factors significantly related to ASCOT SCRQoL by self‐ and proxy‐report. Key influences on carers’ own SCRQoL were their health, financial difficulties associated with caring, and satisfaction with social care support. Inadequate home design was significantly negatively associated with SCRQoL for PLWD. The latter stages of the pandemic‐related restrictions (the tier system from 2nd December 2020 to study end, April 2021) were associated with significantly worse SCRQoL for PLWD, but not for carers. The study offers insight into the factors associated with SCRQoL. In particular, the findings highlight the importance of adequate home design for people with dementia; satisfactory social care support and limiting any adverse financial impact of caring are important for carers. The findings indicate a negative effect of COVID restrictions on SCRQoL of people with dementia.