Care between love and obligation: ambivalence in family caregiving for older people with dementia

Abstract

Abstract Introduction The growing number of older people with dementia has increased reliance on unpaid family care. However, the cultural meanings attributed to caregiving remain underexplored, particularly in contexts marked by strong familial obligations and with limited formal support. As cultural norms shape caregiving practices, understanding what care means is essential to understanding how caregivers experience and perform daily tasks. Objectives This study explored family caregivers’ perceptions of the meaning of providing daily care for older people with dementia in a context of strong familial obligations and limited services. Methods A descriptive, exploratory qualitative design was used. Data were collected through semi-structured interviews with 63 family caregivers living in a large urban centre in Brazil between August 2019 and February 2020. Reflexive thematic analysis guided the interpretation of the transcripts. Results One global theme, “Ambivalence of feelings”, and two subthemes were identified: “It means everything: care as fulfilment, love, and reciprocity”; and “The entire burden fell on me: care as duty, obligation, and burden”. Cultural, relational, and socioeconomic factors intertwined to produce these contradictory experiences. While caregivers expressed love and purpose, they also reported fatigue, isolation, and stress. Conclusions The findings reveal how cultural norms, family dynamics, and socioeconomic factors intersect to shape the caregiving experience. By framing these dynamics within the Brazilian context, the study broadens international understanding of dementia care in under-resourced settings. It also highlights the need for culturally sensitive policies and supports, such as respite care, financial aid, and training, to strengthen caregiver well-being and the quality of care provided to people living with dementia.