Our study aimed to explore psychological distress in carers of people with dementia during the first wave of COVID-19 pandemic in two severely hit bordering countries. We found that levels of burden, anxiety, depression, and perception of loneliness were marked in caregivers of people with dementia. All psychological symptoms, including loneliness were positively correlated to each other, and were more pervasive in Swiss compared to Italian caregivers, and in spouse compared to children caregivers. Education, employment status and social support were inversely associated with psychological distress.
Previous evidence suggested that providing care for a person with dementia can cause strain and can affect both the psychological and physical health of the carer . Caregivers generally report higher levels of perceived stress, depression, loneliness, burden and lower levels of self-efficacy and well-being compared to the general population . Our results on the inverse association between educational level, social support, employment status, and psychological distress are consistent with those of pre-pandemic studies . Nevertheless, disruption of healthcare facilities and social restriction measures imposed by the pandemic altered care routines and practices, with plausible detrimental consequences on caregivers’ physical and mental health . Direct comparisons with literature are not straightforward because few studies have been conducted on caregivers of people with dementia since the beginning of the pandemic, and in particular during the lockdown, in spring 2020 . However, previous studies [37–39] found that high variations in social support services were associated with increased levels of anxiety, burden, and depression in samples of caregivers from Italy and the UK respectively.
We found some variations in the reported psychological symptoms. While severe levels of reported burden and anxiety were common, more than half of the caregivers in our sample reported only mild to moderate levels of stress and depressive symptoms. The COVID-19 pandemic may affect caregivers’ mental health on multiple levels. The disruption of health care services may led to a sudden and unexpected increase in responsibility. Caregivers had to provide more types of care inputs and for longer hours, with a consequent lower sense of competence and mastery , which in turn are associated to a greater experience of burden . Suspension of respite care and breaks may have altered coping mechanisms and pre-pandemic recover opportunities, contributing to “chronic stressor felt by caregiver with respect to physical and emotional well-being, family relations and financial status” , rather than the more transitory experience of stress to which caregivers can adapt over time. In addition, fear of infecting a loved one can trigger worry and anxiety . Moreover, the uncertainties about infection risks and the very limited knowledge about COVID-19, especially during the first wave of the pandemic, were likely responsible of increases in cognitive alertness, which may shadow or counterbalance depressive symptoms or their perception. Indeed, depression rates in the general population increased during the second wave of the pandemic compared to the first wave, probably because of the prolonged psychological distress and long-term social dislocations .
In our study, we also focused on perceived loneliness. We found that most caregivers reported to feel lonely. This may be explained by the almost complete lack of social interactions imposed by restriction measures, which was abrupt and unprecedented. The reported feeling of being alone and trapped at home with few external support was probably consequent to an actual condition of forced confinement . These findings suggest that caregivers of people with dementia are likely vulnerable to lockdown and social restriction measures, and could suffer remarkable loneliness, which may compromise their ability to provide care . Next, psychological measures correlated to each other, correlations between depression and anxiety were particularly strong, and with higher scores in reported anxiety, predicting higher scores in depression and vice versa. Since a third of our sample reported from severe to extremely severe levels of anxiety, there is a concrete risk of increasing levels of depression in caregivers as the pandemic endures.
We investigated mental health in caregivers during the pandemic in two different countries and Swiss caregivers reported significantly higher distress in all mental health outcomes than their Italian counterparts did. During the first wave, the Italian Government adopted slightly stricter public health measures to contain the pandemic compared to the Swiss Confederation . The extent to which and potential causal role of preventive measures on caregivers’ mental health are not easy to disentangle. However, the variation in the timing and severity of the restriction measures adopted in the two countries may have contributed, at least to some extent, to explain the differences we found between Swiss and Italian caregivers. The presence of prompt preventive measures to reduce the risk of infection, especially for the elderly and vulnerable populations, may have contributed to lessen the anxiety and fear of contagion in Italian caregivers of people with dementia. On the other hand, the latency and minor severity of restrictions adopted by the Swiss Federal Council may have triggered a sense of personal unsafety for both the caregiver and the care-recipient. Nonetheless, other socio-cultural and contextual factors may contribute to explain the fact that Swiss caregivers reported significantly higher distress in all mental health outcomes than Italian carers did. Evidence suggests that social support is a protective factor towards burden and psychological distress in dementia caregivers [47, 48]. Since in our study Italian caregivers reported to receive more help in caring duties compared to Swiss caregivers (Table 1), the differences in use and availability of emotional and practical forms of support during the pandemic may lead the burden due to the disruption of services and the additional care responsibilities. A further investigation on specific restrictive measures and services available during the lockdown for caregivers of people with dementia in the two different countries is needed to clarify the differences.
The present study is not free from limitations. The lack of longitudinal or pre-pandemic data on the burden, mental health, and loneliness of caregivers limits causal inference. However, we found exceptionally high levels of burden and psychological distress according to commonly used and standardized scales. Further, although the sample of our study was large it was not representative of the target population. We cannot exclude selection bias also because only caregivers who had access to the internet and to our recruitment channels could participate in the survey. Nevertheless, the study population had a broad sociodemographic spectrum, which provides support at least to some extent to the external validity of our results. We measured psychological distress using robust and valid measures, and participants self-reported a wide range of their socio-demographic and care characteristics. However, people with dementia were less thoroughly characterised. We did not measure behavioural and psychological symptoms of dementia (BPSD), and we used a binary question to measure autonomy and not a standard measure of activities of daily living (ADL). BPSD and ADL impairments are associated with strain and psychological distress in caregivers [49, 50], and may have worsened because of self-sheltering, quarantine, and other personal and social restrictive measures