To help counter the spread of COVID-19, since March 2020 there have been three national lockdowns in England and Wales, as well as local lockdowns with varying restrictions on social activities in different areas. Here, we followed up on carers from the IDEAL cohort several months into the pandemic, and investigated whether their experience of living through the pandemic and the associated social restrictions affected their well-being, as well as their beliefs about how they managed their caring responsibilities. We used longitudinal data to determine whether the changes in response over time were different during the pandemic compared to before the pandemic, allowing us to distinguish whether any change was due to the COVID-19 pandemic itself or attributable to other possible causes, such as higher levels of carer burden as dementia progressed. Contrary to our hypotheses, we found no effect of the COVID-19 pandemic on either quality of life or well-being of the carers and, interestingly, we found that the carers responded more positively to questions asking about their abilities to cope, their competence, and their feelings of being trapped in their roles compared to how they responded before the pandemic. This suggests that several months after the initial lockdown, the impact of the pandemic did not negatively affect the carers of people with dementia.
Most studies have considered the early stage of the pandemic when there were the greatest restrictions and older people or those with medical conditions were advised to stay at home and shield as much as possible. A number of studies have found that the restrictions and social isolation measures associated with the COVID-19 pandemic negatively impacted on perceived cognition of the person with dementia, increased the severity of neuropsychiatric symptoms, and led to perceived functional decline and decreased independence [9, 25, 35]. Several studies found that carers experienced a higher level of stress or worsening well-being, and increased burden and exhaustion as a result of reduced access to formal care services and respite care, or due to anxiety about the person with dementia catching COVID-19 and refusing support to reduce the risk [9, 11, 12, 17, 22, 25, 36, 37]. The primary carer, often a spouse, spent more hours caring and had additional responsibilities, particularly when caring for someone with severe dementia . Alzheimer’s Society reported a strong negative emotional impact of the pandemic on the mental health outcomes of carers and strained relationships between the carer and person with dementia . Other studies reported greater anxiety, depression, irritability, and helplessness of the carer  and high stress and burden, and low quality of life  but had no pre-pandemic controls. Another study reported that even before the pandemic, spousal carers found responsibilities overwhelming, and as a result of declining help to reduce risk, felt more trapped and had more conflicts with their partner .
However, other studies found less of a negative impact of the pandemic. A qualitative study reported some negative consequences of lockdown on carer well-being, but some carers reported no impact because they continued to engage in meaningful or valued activities, or because they already led a restricted lifestyle before the pandemic . Qualitative interviews of 11 carers from the IDEAL cohort during the initial lockdown, with follow-up in July 2020 when restrictions were easing, found that some carers were coping well and this corresponded with good health, strong relationships and community support . Several studies found that carers reported a strengthened relationship and deeper connections with the care recipient due to spending more time together [1, 16, 40]. In a qualitative study focusing on positive aspects of caring during COVID-19, carers also reported finding a greater connection with their values and what was important in their lives, such as the act of caregiving and the way they viewed themselves . Several carers reported gratitude for their experience, which enabled them to develop close relationships with not only the care recipient, but other family members and paid carers, which they wanted to continue. They reported a strengthening of commitment to the person with dementia, and recognised the importance of asking for and accepting help with looking after themselves in an ongoing way and of seeking opportunities to connect with others in the same situation . Some studies found no changes in carer-reported neuropsychiatric symptoms of the person with dementia and no difference in carer stress in the first couple of months of lockdown , whereas another study reported worsening neuropsychiatric symptoms but no change in carer well-being . Therefore, the findings from the evidence-base present a mixed picture on the impact of the pandemic on carers.
In our study, more carers reported poorer quality of life at wave 2 compared to wave 1 in both pre-pandemic and pandemic groups, suggesting a decline in quality of life over time. However, the decline was similar for those in the pandemic group compared to those in the pre-pandemic group. In addition, well-being was stable across time for both groups. Our findings therefore suggest the COVID-19 pandemic had little impact on the well-being of the carer. Almost all of the studies to date were conducted in the first few months of the pandemic, whereas ours was conducted from 8 months onwards, reflecting a longer-term impact of the pandemic on the carer. One study did find increased stress, anxiety, and depression in the carers at the beginning of lockdown which improved after 2 months  and another study found that, coinciding with a drop in social support and particularly in day services shortly after lockdown measures were introduced, an upward trend emerged for carers receiving support over three time points (April/May 2020, followed up at 6 weeks and 12 weeks) which corresponded with a decrease in depression, anxiety, and an increase in quality of life . Whilst timing of studies is the most likely explanation for discrepant findings, most studies also did not have appropriate pre-pandemic control groups or did not compare carer measures to pre-pandemic levels at all. To our knowledge, no other study has compared changes during the pandemic to the change in a similar time frame under normal circumstances in the way that ours did. Our findings for quality of life and well-being suggest the changes experienced by carers during the pandemic are parallel to those experienced by carers with similar demographic characteristics under normal circumstances. In addition, many of the studies relied on how the carer remembered things before the pandemic, which may have been impacted by current emotional state.
As far as we know, this is the first quantitative study to look specifically at carers’ feelings of coping, competency and role captivity during the pandemic. Whilst there was a small but positive effect on perceived competency and role captivity, our most striking finding was for coping. Whilst pre-pandemic there was a pattern towards a decrease in coping between wave 1 and wave 2 of data collection, there was an increase in the number of carers endorsing better coping between wave 1 and wave 2 of data collection during the pandemic. A qualitative study reported carers expressing feelings that they were struggling to cope early on in the pandemic , but a study conducted later in the pandemic, between June 2020 and March 2021, found that three-quarters of the carers believed they were coping well .
There are several reasons why carers may have begun to feel more positive several months into the pandemic. It is likely that with the changing circumstances and disruptions to daily routines and the loss of external support, carers struggled at the beginning of the pandemic. After overcoming the initial shock of the pandemic, they may have adapted to new routines and coped with the changes. They may have been feeling more optimistic due to the rollout of the vaccination programme, the easing of restrictions, and reintroduction of support services, although this might be dependent on restrictions at the time of interview. They may have more self-belief, and, as several qualitative studies indicate, where their relationships with the care-recipient was already good and reciprocal their relationship may have strengthened . They may also have responded more positively due to greater negative feelings early on in the pandemic meaning they had a lower starting point than those asked pre-pandemic. Finally, in our study, the majority of carers were spouses so there may have been less of a disruption to normal routines particularly for those who did not previously rely on external support services, which is also evidenced in O’Rourke et al .
Our study had a number of limitations. Whilst we matched two pre-pandemic carers to each pandemic carer, more carers in the pandemic group were caring for people for whom more time had elapsed since diagnosis, because most of them had been in IDEAL since T1. Time since diagnosis was adjusted for to help mitigate this limitation. Another limitation is the timing of the waves. Because no one was prepared for the COVID-19 pandemic, we had to use pre-pandemic time points that were closest in terms of time between waves for the pre-pandemic and pandemic groups, but the gap between T3 and INCLUDE (pandemic group) was larger than the gap between T1 and T3 (pre-pandemic group). However, we investigated whether including months between waves as a covariate or an interaction impacted on results and found little difference. Our study was conducted between September 2020 and April 2021. There was significant easing of restrictions over summer 2020 (June to September), a national lockdown in England from November to December 2020, another lockdown between January and March 2021, fluctuations in levels of restrictions at other times, and also the introduction of the vaccination programme in December 2020, all of which may have impacted on how positive carers felt at the time of the interview. In addition, quality of life and well-being are usually measured with composite measures in IDEAL, but for INCLUDE only single-item measures were administered. This was to reduce the burden for both researchers and participants as the interview was conducted over the telephone or online. This may have meant that the measures did not reflect the constructs as effectively. Finally, carers were invited to take part in the study even if the care recipient did not, so the study should encompass those who were caring for someone with more severe dementia. However, those carers who were not coping well may have been less inclined to take part, and so the group who were likely to respond most negatively may have been missed.
Our study suggests that, several months into the pandemic, COVID-19 was not having a negative impact on the well-being of carers, and in fact we found a higher level of beliefs that the carer could manage compared to before the pandemic. This study shows a more positive understanding of how carers managed during the pandemic and suggests that, six to twelve months in, carers were resilient and able to cope with the changes brought about by the pandemic. At this point the pandemic was far from over, however, and the impact of living through further stages of the pandemic and the eventual return to normality on both carers and care recipients remains to be determined.