Caregiving for a parent with dementia during the pandemic, challenges and stories from Northern Italy

The COVID-19 pandemic posed new challenges to family caregivers. The aim of the present study was to explore how and to what extent the emergency affected everyday lives and care routine of the family caregivers of patients with dementia. Twenty family caregivers (adult children of the patient) were interviewed via phone and video call to explore the changes inside the family (care routine, interactions, other caregivers) and the external support networks (health professionals, emergency support and associations). Thematic analysis was performed on data. Results pointed out five main themes: caregiver’s experience (lockdown experience, concerns about covid-19, nostalgia of social life, economic difficulties, concerns for the care recipient), care recipient’s experience (comprehension of the situation, behavioral changes), relationship with the care recipients (contact limitations, dilemmas in respecting preventive measures, video and phone calls), changes in the care routine (grocery shopping, prevention and attention to hygiene, physical activity, dedicated time to caregiving), resources (other family members’ support, home care aides, healthcare system, patients’ associations, general practitioners). Depending on the personal experience of COVID-19, personal approaches to preventive rules, availability of resources, and formal or informal support, three main approaches to care were identified: apprehensive, mindful and fatalistic. The pandemic amplified the typical challenges and difficulties experienced by family caregivers, and resulted in an increased burden, which was 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 caregivers, especially during emergencies.