Interviews with seven carers one year into the pandemic in England have highlighted different dimensions of caring including the range and intensity of everyday challenges of caring for someone with dementia. The COVID-19 pandemic has further intensified these difficult aspects of caring including protecting the person with dementia and avoiding coronavirus risk, with interviewees also reporting observed decline in the person they care for. In the absence of social support from family and friends and formal respite care, and also at a time when dementia support groups and professional supports were still limited, some family carers had been caring beyond capacity, especially as the pandemic had continued. Also certain issues seemed to pre-date the pandemic but have been highlighted further by its onset; in particular, a lack of continued service support from diagnosis onwards and the need for appropriate, individualised service support and activities.
These findings have implications for resilience in family carers of people with dementia, in relation to unmet needs within and outside of the caring role. Prior to the pandemic, it has been reported that carers of people with dementia have a higher level of unmet needs and less use of services compared with those caring for people with other conditions (Bressnan, Vistintini and Palese, 2020; McCabe, You and Tatangelo, 2016) and with the person with dementia they care for (Mazurek et al., 2019). Our study suggests unmet needs have been compounded during the pandemic, with carers often managing a range of intense care needs for the person with dementia but without their usual social supports and day or respite care and with no checking in by statutory services. Consequently, carers’ accounts suggested they were or had been at breaking point, burned out and caring beyond capacity due to intensified caring demands which had continued as the pandemic progressed. Hanna et al. (2022) have also considered resilience and the experiences of people with dementia and their family carers during the pandemic, reporting greater emphasis on individual coping in the absence of system level supports such as dementia groups and paid care. Therefore, particularly within the context of the pandemic, it seems difficult to justify the focus on trait-based approaches to carer resilience research and interventions discussed previously (McKenna et al., 2021; Teahan et al., 2018) in which the family carer is divorced from the socio-ecological context in which they are providing the care.
Building carers’ individual resilience cannot be achieved in the absence of practical support (Henwood, Larkin and Milne, 2017) nor should it exclude a focus on health and political macro-systems (Teahan et al., 2018), particularly as the COVID-19 pandemic has further highlighted the problems for carers when such systems are eroded. However, individual approaches to resilience may persist under the guise of personal responsibility and active citizenship to divert attention from underfunding of services (Windle, 2021) such as social care and day care; although, as our study has suggested, it is uncertain how carers can be expected to go on indefinitely without such supports in place. Consequently, there may be a subtext to resilience approaches, not dissimilar to the ‘positive thinking’ in cancer rhetoric during the 1990s (De Raeve, 2003; Wilkinson and Kitzinger, 2000), wherein resilience may be forced as a moral imperative or “expected norm” (Windle, 2021, pp.42). Such an imperative is also suggestive of another problem with the resilience rhetoric in general, in that meeting carers’ own needs outside of the caring role are not represented within transactional models of resilience. Focus of support for carers in general is not on individuals themselves but rather to facilitate their caring role (Henwood, Larkin and Milne, 2018), with sparse attention afforded the unmet needs of carers of people with dementia outside of the caring role (Holt Clemmensen et al., 2020). Notably, maintaining carers within the caring role only is explicitly stated as the impetus behind delineation of the carer resilience model by Parkinson et al. (2017) and is arguably the subtext of other discussions. Therefore, almost 30 years on from the typology of caring (Twigg and Atkin, 1994), the resilience rhetoric may further position carers of people with dementia as ‘resources’. From our study findings, this appears to have been the case during the pandemic.
In our study, as well as carers’ unmet needs in relation to the caring role, findings suggested unmet needs separate from this role, although this was complex to determine. Quinn, Clare and Woods (2015) have reported the continual dilemma carers may have in balancing their own needs against those of the person they care for, although carers can benefit from a needs-based approach to consider the impact of caring on their lives (Pini et al., 2018). Our carers’ accounts resonated with ‘boundarying’ in other studies, where carers pursue their own meaningful activities to compartmentalise the caring role and maintain a sense of self-identity (Cherry et al., 2019). For our interviewees, however, considering their needs in isolation from the caring role was sometimes difficult, although absence of discussion does not mean absence of need. Carers’ reluctance to discuss their own needs is not uncommon, and in dementia caregiving, where motivations to care are embedded within spousal and family relationships, the term ‘carer’ may be rejected entirely (Greenwood, McKevitt and Milne, 2018; Greenwood and Smith, 2019). However, also not uncommon, our study suggested that the caring role itself may be difficult to separate from other roles within family relationships (e.g. wife; partner; daughter). Therefore, it can be argued that, existing within this liminal space, family members who care for a relative with dementia are at risk of being overlooked by services.
Our findings also show aspects of the caring role not overtly represented in transactional frameworks of resilience. Only one framework includes unmet needs outside of the caring role in relation to carers’ quality of life as well as carers’ own health needs (Parkinson et al., 2017). Responsibilities outside the caring role (e.g. paid work roles; caring for other relatives) are not represented, although these are depicted as secondary role strains in the stress-process model of caring (Pearlin et al., 1990). Carer-care recipient relationships have been represented within some transactional frameworks (Parkinson et al., 2017; Windle and Bennett, 2012) but not all (Donnellan, Bennett and Soulsby, 2017), although relationship quality may be important for life satisfaction and well-being (Rippon et al., 2020). The range and intensity of daily care demands was also suggested by our interviews, yet surprisingly are not represented in resilience models, when resilience has been shown to vary depending on the need for high levels of care (Joling et al., 2016). In addition, duration of the caring role may have implications for studying resilience but caregiving research in general is seldom longitudinal (Greenword, McKevitt and Milne, 2018), therein overlooking caregiving trajectories over time and in context.
Our study has provided some insights into the experiences of family carers of people with dementia one year into the COVID-19 pandemic as well as suggesting potential implications of these in relation to carer resilience. Nonetheless, the study is not without its limitations. Convenience sampling was employed which was necessary to facilitate the INCLUDE ‘rapid response’ to the COVID-19 pandemic but is not an optimal approach within qualitative research (Patton, 2014). Although reflecting the socio-demographic characteristics of the INCLUDE cohort from which the sample was drawn, we did not attempt to contrast experiences across gender, ethnic background, different ages and in different circumstances, for example spousal and filial carers, older carers, working carers, and those caring for someone with young onset dementia. In addition, resilience was not devised as the theoretical frame for the study at the design stage which would have informed the topic guide and interviews accordingly, although the conceptual framework for IDEAL includes the multiple psychosocial resources necessary to make it possible to adapt and live well as a carer for someone with dementia (Clare et al., 2019). Nonetheless, the experiences of our interviewees during the COVID-19 pandemic have highlighted some of the challenges in conceptualising carer resilience in dementia and how certain theoretical resilience frameworks may have overlooked key facets.