Understanding social exclusion among midlife and older family caregivers of Individuals with age related cognitive declines: results from photo-based participatory study

BACKGROUND: Family caregivers of adults with cognitive impairment, including dementia, often face complex challenges. However, social exclusion among caregivers aged 50 years and older particularly within the distinctive Central and Eastern European context, remains critically underexplored. This study uses Poland, a country where strong family care norms coexist with limited formal support, as a crucial case study to examine how social exclusion manifests in the caregiving experiences of older family caregivers. METHODS: Using photovoice, a novel participatory action research method for this context, the study engaged six family caregivers aged 50 and above from a single city in Poland. Participants photographed aspects of their caregiving experiences and took part in reflective group discussions. Data from these discussions were analyzed thematically to identify key domains of social exclusion. No statistical tests were applied due to the qualitative and exploratory nature of the study. RESULTS: Thematic analysis revealed four interconnected domains of social exclusion: (1) Relational exclusion-including the erosion of social networks and experiences of stigma; (2) Institutional exclusion-such as difficulties accessing care services, transportation, and public infrastructure; (3) Material exclusion-highlighting financial strain and unmet resource needs; and (4) Paradoxical caregiving roles-reflecting the simultaneous marginalization and moral elevation of caregivers. These findings illustrate the layered and dynamic nature of exclusion in the caregiving trajectory. CONCLUSIONS: A key contribution of this work is the methodological approach. Despite the study's small and localized sample, it demonstrates the pioneering value of photovoice in capturing the context-specific dimensions of social inequality in caregiving acting as a critical tool to amplify caregiver voices. By centering older caregivers in Poland, the study offers novel insights into how familial care responsibilities intersect with systemic gaps in formal support. Despite limitations in generalizability, these context-specific findings demonstrate the impact of Polish systemic gaps and can enrich cross-national discussions on caregiver vulnerability and resilience, emphasizing the need for targeted social protection policies and inclusive service design.