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 (Identifying and Mitigating the Individual and Dyadic Impact of COVID-19 and Life Under Physical Distancing on People with Dementia and Carers) component of the IDEAL (Improving the Experience of Dementia and Enhancing Active Life) 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 within the context of the ‘post-vaccine’ period and the national lockdowns in England and Wales; and to determine perceived challenges to and facilitators of ‘living well’ during the COVID-19 pandemic and beyond as restrictions were eased. In addition, the study findings are considered in relation to understandings of identity in dementia which the broader accounts of living through the pandemic have highlighted. Seven people with mild-to-moderate dementia were interviewed and themes were 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. Interviewees managed threats to social identity by striving to maintain social and emotional connections, where the importance of a shared, social identity, particularly for people with young-onset dementia, was also apparent. Unlike in previous studies during the pandemic, the relevance of occupation for identity was observed, where maintaining previous or new activities or occupations was important to facilitate identity as well as to keep a sense of purpose. Therefore, as well as supporting people with dementia as the pandemic eases, future research into occupation and identity in dementia is of potential value.

Navigating the coronavirus pandemic 2 years on: Experiences of people with dementia from the British IDEAL cohort

“…Our findings uphold early concerns about the impact social isolation may have on psychosocial wellbeing ( Clare et al, 2022 ; Pentecost et al, 2022 ; Rising et al, 2022 ), highlighting the distress caused by awareness of negative changes attributed to reduced social activity and doubts about whether such skills can be restored. Encouragingly, this study, similar to earlier research ( O'Rourke et al, 2021 ; Pentecost et al, 2022 ; Stapley et al, 2022 ), found people with dementia continued to exhibit signs of resilience, responding to new challenges by identifying new and existing strategies to support everyday life with dementia.…”

“…Nevertheless, it is not without limitations. In order to achieve our comparison, recruitment was limited to a pool of participants who had previously taken part in IDEAL-CDI or INCLUDE interviews ( O'Rourke et al, 2021 ; Pentecost et al., 2022 ; Stapley et al, 2022 ) and were able to be interviewed at this time point. The sociodemographic profile of our sample was limited to white British individuals mostly living with young-onset dementia, and four of the nine participants were University educated.…”

“…For a description of the IDEAL, IDEAL CDI and INCLUDE studies see Table 1 . INCLUDE participants completed structured telephone or online interviews between September 2020 and April 2021 ( Clare et al, 2022 ; Quinn et al, 2022 ), and a subset of participants additionally engaged in qualitative semi-structured interviews conducted either before (November to December 2020) ( Pentecost et al, 2022 ) or after (January to April 2021) ( Stapley et al, 2022 ) the start of the vaccination programme in England and Wales.…”

“…Authors attribute these findings to the resilience of people with dementia in learning to adapt to an evolving context of coronavirus, for example by implementing new daily routines, spending time in nature, and communicating with friends, family, and health and social care providers through remote methods ( Clare et al, 2022 ; Sabatini et al, 2022 ). Several qualitative studies have reported the use of such strategies to aid coping ( O'Rourke et al, 2021 ; Pentecost et al, 2022 ; Portacolone et al., 2021 ; Rising et al., 2022 ; Stapley et al, 2022 ). Notably, however, these qualitative studies suggest the impact of the pandemic on people with dementia is far more variable and nuanced than much of the quantitative evidence suggests.…”

“…For a description of the IDEAL, IDEAL CDI and INCLUDE studies see Table 1. INCLUDE participants completed structured telephone or online interviews between September 2020 and April 2021 (Clare et al, 2022;Quinn et al, 2022), and a subset of participants additionally engaged in qualitative semistructured interviews conducted either before (November to December 2020) (Pentecost et al, 2022) or after (January to April 2021) (Stapley et al, 2022) the start of the vaccination programme in England and Wales. Here, we report findings from a further round of qualitative semi-structured interviews with people with dementia conducted between December 13, 2021, and January 25, 2022, after the programme to deliver second vaccinations was completed and during the emergence of the new Omicron variant in England and Wales.…”