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

Abstract

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.

Use of technology by people with dementia and informal carers during COVID‐19: A cross‐country comparison

“…Human contact is vital for people with dementia, thus increasing their well-being as well as reducing their behavioural and psychological symptoms. 51 Consequently, benefits associated with remote activities, instead of replacing human interactions, should be maximised and integrated in usual care. pandemic times.…”

“…Overall, our study revealed that, despite some benefits of using technology, it was not enough to compensate for the lack of in‐person social interactions. Human contact is vital for people with dementia, thus increasing their well‐being as well as reducing their behavioural and psychological symptoms 51 . Consequently, benefits associated with remote activities, instead of replacing human interactions, should be maximised and integrated in usual care.…”

Italian guidance on Dementia Day Care Centres: A position paper

“…The interventions offered by DDCCs to families include active listening, individuals or group interventions, education on the characteristics of the disease, including legal issues, support to relational approach at home, management of pharmacological therapy, and adaptation of home environment. During the COVID-19 pandemic, regular telephone contacts and videoconferencing have become common forms of care support, which have been appreciated by caregivers [154], and their use should be maintained by DDCCs, especially for subjects who attend the service only few days per week. Psychotherapy for caregivers may be indicated in selected cases.…”

International Dementia Policies and Legacies of the Coronavirus Disease 2019 Pandemic

“…There have been examples of adaptation of therapeutic interventions for people living with dementia to virtual formats; for example, in an international pilot of virtual Cognitive Stimulation Therapy ( Perkins et al, 2022 ) and in using technology to provide remote access to music therapy and low-impact exercise ( Chirico et al, 2022 ). Technology can be expected to have an increasing role in dementia service provision, allowing greater independence and expanding the types of services and interventions available to people living with dementia and their care partners.…”