COVID-19 and community-based care services: Experiences of people living with dementia and their informal carers in Italy

The COVID-19 pandemic has significantly limited access to health and social care support systems for people with dementia and their carers, compounding the severe social restrictions. The aim of this study was to investigate the experiences of COVID-19 among community-dwelling people with dementia and their informal carers in Italy. Specifically, we focused on access to community-based services and adopted solutions to provide support and care during exceptional times. Informal carers, caring for someone with dementia and attending community-based services in Italy, participated in remote semi-structured interviews between October and November 2020. Participants were asked about the effects of social isolation and closure of in-person services on their daily lives as well as the challenges of dementia care. Transcripts were analysed using inductive thematic analysis. 22 informal carers were interviewed. Three themes emerged: (1) Disruptions to people with dementia's lives and health; (2) COVID-19 as an additional stressor for carers; and (3) New ways of caring for people with dementia during COVID-19. Face-to-face social care and social support services were suddenly interrupted and restrictions on social distancing were introduced, thus leading to people with dementia's impaired health and increased behavioural and psychological symptoms. Not only the amount but also the intensity of care increased, with no chance of respite for informal carers. Overall remote activities provided participants with emotional and social benefits, while allowing the continuity of relationships with services staff and users and of care. However, according to carers, a combination of virtual and face-to-face activities could better counterbalance the multiple adverse outcomes of COVID-19. Public health measures should be designed carefully to consider the safety needs and the physical, psychological and social needs of people with dementia. Within a holistic care approach, social care services need to be enabled better to guarantee high-quality care even during pandemic times.