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.

Family care-givers are the backbone of the long-term support system for care receivers at home. Care for stroke survivors after rehabilitation primarily rests on the shoulders of family members, often of older age themselves. We report the outcomes of a new complex support programme, the Care-givers’ Guide, on both individual and system levels. Psycho-social support and personalised information were the main ingredients of this intervention. A two-level multi-methodological approach was needed, with two concurrent interconnected studies. Family care-givers reflected on outcomes at an individual level in a quant-QUAL study with a pre–post quantitative questionnaire and a post-intervention qualitative semi-structured interview. Practitioners participated in a QUAL-QUAL study ex post interview, reflecting on the outcomes on the care-givers and on their own stroke care system. Individual family care-givers showed an increase in health literacy and level of psycho-social health. Qualitative analysis revealed improvement in knowledge, capability to act and individual empowerment; and stabilisation of sense of certainty, life balance and emotional wellbeing. Practitioners observed an optimisation of the stroke support system by improving professionals’ daily routine, augmenting the institutional support offer, securing the quality of patient care and increasing inter-institutional co-operation attempts. Positive outcomes of the support programme were observed on both evaluation levels: family care-givers showed improved health literacy and psycho-social health, whereas the professionals noticed an optimisation of the support system.