Persons with a migration background caring for a family member with dementia: Challenges to shared care

BACKGROUND AND OBJECTIVES: By shedding light on the reasons why persons with a migration background (PwM) may take up the role of family caregiver of a person with dementia, and how this relates to gender norms, we aim to elucidate cultural and social dynamics that impede care sharing. RESEARCH DESIGN AND METHODS: A qualitative study of 12 PwM who provide care, or have recently provided care, for a family member with dementia was conducted through semi-structured interviews. Identified themes and patterns were analyzed with the help of Hochschild's interpretive framework of framing and feeling rules. FINDINGS: Our findings illuminate how motivations to provide care are framed through two moral framing rules, reciprocal love and filial responsibility, and how these framing rules are accompanied by the feeling rule of moral superiority over non-caregiving family members. We show how shared dementia care is impeded though these moral framing and feeling rules, and how gender norms impact on an unequal distribution of care-tasks. IMPLICATIONS: Healthcare practitioners should identify the moral dialectics of caregiving. This means that, on the one hand, they should be aware that moral framing rules may pressure women into exclusive caregiving, and that this can lead to health problems in the long term. On the other, healthcare practitioners should recognize that providing care can create a deep sense of pride and moral superiority. Therefore, showing acknowledgement of the caregiver contribution is a crucial step in creating trust between the caregiver and healthcare practitioner. Furthermore, asking for support should be normalized. Governmental advertisements on care-support can achieve this.