A comparison of well-being of carers of people with dementia and their ability to manage before and during the COVID-19 pandemic: findings from the IDEAL study

Abstract Background Lockdown and social restriction measures imposed to curb the spread of COVID-19 in the United Kingdom impacted on carers of people with dementia, limiting their access to support services and increasing perceived burden of caring. Few studies have compared data collected during the pandemic and data collected before the pandemic to examine the effect of these changes. Objective To explore whether the COVID-19 pandemic affected the well-being of carers of people with dementia, and their ability to cope with their caring responsibilities. Methods Carers of people with dementia living in the community who were enrolled in the IDEAL programme were split into two groups matched on demographic characteristics: the ‘pre-pandemic group’ (n = 312), assessed at two time points prior to the pandemic, and the ‘pandemic group’, assessed prior to and several months into the pandemic (n = 156). Self-report measures of carer well-being, quality of life, coping, perceived competence and role captivity were completed. Results Compared to the pre-pandemic group, those in the pandemic group appeared to cope better and had more stable self-rated competency and role captivity. They did not differ in terms of well-being or quality of life. Conclusion Despite reports of negative impacts on carers early in the pandemic, our findings suggest the pandemic had little negative longer-term impact on carers of people with dementia, and in fact they appeared to have a more positive attitude towards coping several months into the pandemic.