In 2020, when the worldwide COVID-19 pandemic emerged with its associated social restrictions on face-to-face interactions, people with dementia and their family carers were particularly hard hit. Yet the impacts on family carers didn’t end when social restrictions eased. Some issues were pandemic-specific, but others demonstrated the longstanding support problems which preceded it.
In the UK alone, there are 900,000 people estimated to be living with dementia, with around 60 per cent living in the community. One in three of us will care for someone with dementia in our lifetime. Research at the start of the pandemic highlighted individual variability in family carers’ capacity to cope with dementia caregiving. Studies which compared data over time uncovered negative impacts on health, wellbeing, stress and carer burden, although other such research reported little impact on the overall experience of caring.
We conducted interviews with family carers from late 2021 to early 2022, two years from the initial outbreak, when the new Omicron variant was emerging in the UK. Mask wearing was still recommended but social restrictions had eased. Our qualitative interviews explored the ongoing impacts of the pandemic for carers of relatives living with dementia. We interviewed ten family carers taking part in the INCLUDE project, the COVID-19-specific component of the 10-year IDEAL cohort study, who had already been interviewed earlier in the pandemic. The five female and five male interviewees ranged in age from 57 to 85 years, and all were White British. Eight were spouses or partners; the two filial carers lived separately from the person they cared for.
Although family carers tried to re-engage with the world as social restrictions eased, some remained cautious because of the risk presented by others not respecting personal space, expressing that they were “still kind of wary of where we go”. Dementia services such as memory cafés and day centres had not all reopened, due to lack of staff or funding. Family and friends who had provided help and respite during the pandemic had stopped when life returned to normal: “At the start of the whole thing we saw quite a lot of her [friend], but it’s eased off a bit now, and I can’t do the things that I used to be able to do”.
Re-engagement was also compounded by the ‘new normal’ of perceived decline in the person with dementia, in their behaviour, personality and the ability to carry out daily activities. Although dementia is a progressive neurodegenerative condition, some family carers attributed this perceived decline to the lack of mental stimulation and social interaction normally afforded by their usual activities. One said: “because there was no structure to it, it speeded up his dementia”. Decline in the person with dementia also meant that the caring role had intensified so that family members were now caring under stress with little or no time to themselves and alongside their own health problems: “Carers have become very aware that the danger is that the carer can become the patient, and the patient can become the carer”.
As in our interviews earlier in the pandemic, carers still felt overlooked and undervalued by society and the government: “Nobody seems to care”, one said. There had been no specific provision or government advice for family carers of those with dementia. Carers also felt unsupported by health and social care professionals who didn’t seem to be concerned with how carers were coping: “The professionals are the ones that […] let us down a bit more”. Even telephone calls from dementia charities earlier in the pandemic which had helped to counter the lack of statutory service support had stopped. As an alternative, some carers had formed their own online support groups, although they missed the expertise of more formal support from dementia care professionals. Applications for financial assistance had also been substantially disrupted and delayed due to the pandemic which was another source of carer stress.
Sadly, although trying to re-engage with the world two years on from the start of the pandemic, family carers were experiencing pandemic-related difficulties while other people had returned to ‘normality’. Alongside and perhaps because of the absence of formal service provision, carers were experiencing the additional challenges of heightened stress and the potential for carer burnout. This can be a point where the only solution is to look for long-term care for the person with dementia.
This has implications for wider society in the current climate, when social care services and care homes are already under pressure. These findings complement our earlier work with family carers of people with dementia during the pandemic which guarded against conceptualising carer resilience as an individual attribute of the carer. Carer resilience and wellbeing can only be fostered by appropriate measures including adequate service provision to support people with dementia and their families. Continued funding of dementia voluntary organisations, particularly local groups, is also essential as these can be a lifeline for families, as their absence during the pandemic highlighted.
Lack of support for family carers of people with dementia is not unique to our research nor to the COVID-19 pandemic. Post-diagnostic support for people with dementia and their family carers is notoriously variable across the UK, where adequate and timely support is perhaps more the exception than the norm. The implications of this and our study two years into the pandemic are that, although the pandemic may have heightened lack of service provision, it did not cause it. The current variability and precarious sustainability of support for carers needs to be addressed. To prevent carer burnout and maintain wellbeing, particularly as their relatives’ dementia worsens, family carers need regular assessment of their support needs, access to care advice, and appropriate post-diagnostic support across the dementia journey.
Sally Stapley PhD is a Postdoctoral Research Associate at the University of Exeter, working on the IDEAL cohort study and other projects aiming to improve the lives of people with dementia and their family carers.
Claire Pentecost PhD is a Senior Research Fellow and Programme Manager for IDEAL at the University of Exeter. She led on the qualitative element of INCLUDE, produced a play ‘The World Turned Upside Down’ for IDEAL and helped deliver the Living with Dementia Toolkit. She has a background in Trial Management and an interest in qualitative research.
Co-produced information and advice, based on the experience of carers and people living with dementia, can be found in this free IDEAL online resource: https://livingwithdementiatoolkit.org.uk
Navigating the COVID-19 pandemic two years on: experiences of carers of people with dementia from the British IDEAL cohort by Rachel Collins, Eleanor Dawson, Claire Pentecost, Sally Stapley, Catherine Quinn, Catherine Charlwood, Louise Allan, Christina Victor, and Linda Clare is available here on Bristol University Press Digital .
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