Living with dementia during the COVID-19 pandemic: insights into identity from the IDEAL cohort

Abstract The continuing COVID-19 pandemic and social restrictions have impacted on the cognitive decline and mental health of people with dementia. Social isolation and loss of activities due to social restrictions may also have implications as to sense of identity for people with dementia. As part of the INCLUDE component of the IDEAL cohort study, the overall aim of this subtle realist qualitative study was to explore the perspectives of people with dementia on living through the COVID-19 pandemic in England and Wales during the post-vaccine time period; also with focus on the study findings in relation to understandings of identity in dementia. Seven people with mild-to-moderate dementia were interviewed, and themes derived using framework analysis. Themes suggest interviewees’ stoic acceptance of the pandemic and social restrictions but also fear of decline related to the temporality of their condition as well as loss of self-confidence to re-engage with the world, and loss of social connections. Under threat due to lack of access to dementia groups, the importance of a shared, social identity, particularly for people with young-onset dementia, was apparent. With valued activities also prevented or reinvented during the pandemic, the relevance of occupation for identity is discussed. Although under continued pressure, services must consider how people with dementia and their family caregivers can best be supported during the ongoing pandemic.