Needs, resources, and barriers among family caregivers of people with dementia: a qualitative study

BACKGROUND: Dementia poses major challenges for public health and care systems, with family caregivers serving as the primary source of support. AIMS: This study explored the perceived needs, resources, and meanings attributed to the caregiving experience by family caregivers of people with dementia in a community-based setting. METHODS: An exploratory qualitative study was conducted using individual semi-structured interviews at a community health center. Sociodemographic and care-related information was collected, and four standardized questionnaires were administered for descriptive contextual purposes only. Qualitative data were analysed thematically with a two-phase approach, starting from an existing framework on meaning-making and using a secondary categorization for defining a conceptual model of barriers and resources. RESULTS: Twenty-five caregivers participated in the study. Levels of psychological distress and caregiver burden indicated emotional strain. Qualitative analysis identified three main themes and seven subthemes: (1) Complicated demands and healthcare interactions, including management of complex care needs and interaction with services; (2) Familial and relational dynamics, encompassing changes in family and social relationships, and shifts in reciprocity and role redefinition; and (3) Coping strategies and identity transformation, involving care as a source of personal meaning, sense of caregiving competence, and personal transformation. A conceptual model highlighted interconnected barriers and resources across individual, relational, and structural levels. DISCUSSION: The identified themes advance understanding of caregivers' lived experiences and the interplay between individual, relational, and structural factors. CONCLUSIONS: The study highlights the importance of considering caregivers' coping strategies, health literacy, and resources through dedicated community-based interventions aimed at promoting their well-being and enhancing dementia care sustainability.