Caring for a person with dementia during the COVID-19 pandemic: a qualitative study with family care-givers

The aim of this study was to explore the experience of family care-givers of people with dementia during the COVID-19 pandemic in the Veneto region of Italy to understand how and to what extent the emergency has affected care-givers’ lives and care routines. Twenty adult children of an ill person were interviewed via phone and video call, in adherence with the restrictions against COVID-19. Thematic analysis showed five main themes: the care-giver's experience, the care recipient's experience, relationships with care recipients, changes in the care routine and resources. Results pointed out that the time needed in the care routine and everyday activities increased during the pandemic, together with the need to find alternatives to physical activity at home. Depending on one's personal experience of COVID-19 and approach to preventive rules, the availability of resources, and formal and informal support, three main approaches to care were identified: apprehensive, mindful and fatalistic ones. The pandemic amplified the differences among these already-existing approaches to care as well as the typical challenges and difficulties experienced by family care-givers, and it resulted in an increased burden connected to practical difficulties, emotional stress and difficulties in reaching for help. These results underline the importance of strengthening the external support network for older people to help family care-givers, especially during emergencies.