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Abstract
BackgroundThere is sparse evidence on the impact on vulnerable populations of the COVID-19 pandemic. The aim of our study was to explore burden and mental wellbeing (including depressive, anxiety, and stress symptoms) in caregivers of people with dementia during the first wave of the pandemic in Italy and southern Switzerland, two bordering regions severely hit by the COVID-19 pandemic.MethodsWe conducted an online cross-sectional survey with family carers of people with dementia between May and June 2020. We registered socio-demographic characteristics, and information about the relationship with the care recipient, dementia subtype, care inputs from others, and the need of care of the person with dementia. We measured caregiver burden with the Zarit Burden Interview (ZBI), psychological distress with the Depression, Anxiety and Stress Scale (DASS-21), and perceived isolation with the 3-item UCLA Loneliness Scale (UCLALS3).ResultsCaregivers (N =571) reported moderate to severe care-related burden (mean=54.30; SD=18.33), moderate anxiety symptoms (mean=10.04; SD=6.93), mild depressive symptoms (mean=11.79; SD=6.12) and mild stress (mean=12.95; SD=5.53), and 72.3% of participants reported to feel lonely. All scores were significantly more severe in Swiss compared to Italian caregivers (all p values<0.001).ConclusionsWe found that caregivers’ burden, anxiety symptoms, depression and perceived loneliness were marked during the first wave of the COVID-19 pandemic, in two severely hit bordering countries. Regional differences in the impact of the epidemic on caregivers could be due to contextual, societal, and cultural circumstances. As the pandemic endures, support to caregivers of people with dementia should be proportionate and tailored to needs and adapted to contextual factors.
Highlights
Dementia influences those who are affected and the family members who very often care for their relatives at home [1]
In 2019, according to the World Health Organization (WHO), informal caregivers worldwide spent over 89 billion hours assisting a family member with dementia in basic personal activities of daily living, with women contributing to 70% of global hours of care [3]
Most participants cared for a family member affected by Alzheimer’s Disease (55.3%), followed by Vascular (16.6%), Parkinson’s (12.6%), Frontotemporal dementia (7.7%), Lewy-Body dementia (3.3%), and other or unspecified types of dementia (4.5%)
Summary
Dementia influences those who are affected and the family members who very often care for their relatives at home [1]. In 2019, according to the World Health Organization (WHO), informal caregivers worldwide spent over 89 billion hours assisting a family member with dementia in basic personal activities of daily living, with women contributing to 70% of global hours of care [3]. Informal care provision generally reflects more factors, from the scarcity or lack of resources and formal support services for people with dementia, to social and cultural expectations that family members, especially women, have the obligation to take care of a relative in need [4]. All the changes imposed by the pandemic have likely exacerbated already taxing caring conditions and may have contributed to increase and worsen psychological distress of caregivers, potentially in the long term. The aim of our study was to explore burden and mental wellbeing (including depressive, anxiety, and stress symptoms) in caregivers of people with dementia during the first wave of the pandemic in Italy and southern Switzerland, two bordering regions severely hit by the COVID-19 pandemic
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