Migrant informal caregiver perceptions and experiences of caring for a family member with dementia: A systematic review and thematic synthesis

Aims and objectives To describe migrant family caregivers' experiences and perceptions of caring for a family member with dementia. Background There are demographic trends of aging populations and increased migration between countries. Age-associated diseases, such as dementia, are expected to increase, with migrants being at significantly increased risk. Knowledge of how dementia care is provided within migrant families is scarce. Design Systematic review and thematic synthesis of qualitative research were performed to inform the development of interventions that can acknowledge and respond to the needs, concerns and preferences of migrant family caregivers. Methods Searches were performed in PubMed, PsycINFO and CINAHL and reference lists in published articles were reviewed for the period 2000-October 2020. The CASP checklist for qualitative research was used to assess evidence quality, and the ENTREQ framework was used as a guide for study reporting. Results Twenty-six articles from 10 Western countries, including 360 informal migrant caregivers from more than 30 countries of origin, were eligible. Within four areas of construct-perceptions of dementia and initial help-seeking; barriers to accessing and using formal dementia care; caregiver burden and coping and resilience-12 descriptive themes were identified. Several concepts cut across the themes, such as language difficulties; the role of the family in relation to care and support; cultural perceptions of dementia and care; stigma, pride and shame; the importance of religion and the importance of trust. Conclusions The review revealed commonalities among migrant family caregivers that resulted in reduced understanding of dementia and the importance of diagnosis and treatment. Relevance to clinical practice To prevent a negative trajectory in caregiving, with perceived demands causing high levels of stress and strain, several barriers to migrants accessing and using formal care need to be assessed and addressed.