A cross-sectional study during COVID-19 of the social care-related quality of life of people with dementia and their carers in England

Objective: The study aimed to establish the factors related to the social care-related QoL of people living with dementia (proxy-report) and their carers (self-report).

Methods: An online/postal survey of 313 carers in England was conducted from January 2020 to April 2021. Carers were eligible if they supported someone living with dementia, who lived at home, was unable to self-complete a questionnaire (even with help), and used community-based long-term care. Multiple regression was applied to establish the factors related to the social care-related quality of life (SCRQoL) of carers (self-report, using ASCOT-Carer) and people with dementia (proxy-report, using ASCOT-Proxy).

Findings: Factors related to carers’ SCRQoL were their own health, financial difficulties associated with caring, and satisfaction with long-term care services. Inadequate home design was significantly negatively associated with SCRQoL for people living with dementia. The latter stages of pandemic-related restrictions in England (specifically, the tier system from 2nd December 2020 to study end, April 2021) were associated with significantly worse SCRQoL for PLWD, but not for carers.

Conclusion: The study offers insight into the factors associated with SCRQoL of people with dementia and their carers. The findings highlight the importance of adequate home design and environment for people with dementia. Satisfactory long-term care support and limiting any adverse financial impact of caring are important for carers. The findings indicate that there was a negative effect of COVID restrictions on SCRQoL of people with dementia.