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

Abstract

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.

Changing dynamics of caregiving: a meta-ethnography study of informal caregivers’ experiences with older immigrant family members in Europe

“…Our review showed the notable gender disparities in the distribution of caregiving duties, where women predominantly took on the caregiving role. Similar findings are also present in previous literature [ 2 , 9 , 12 , 13 , 20 ]. Most caregivers were daughters, daughters-in-law, or wives to care receivers.…”

“…Most of the included studies in the review reported the high care burden among caregivers resulting in burnout, characterized by constant stress, limited mobility, and lack of time for oneself. Several previous studies also emphasized the physical, emotional, psychological, and socio-economic burden experienced by caregivers [ 12 , 13 , 16 , 28 ] and showed them having a higher risk of adverse health consequences, such as depression, with higher subjective burden of care [ 27 ]. A noticeable finding in our review is the difficulty, particularly for sole caregivers, to continue their caregiving and highlighted their desire to share caregiving responsibilities with other family members.…”

“…A study from Denmark among minority families demonstrated similar results, concluding that new caregiving approaches emerged as ways to alleviate or distribute the burden of care between siblings [ 18 ]. Other studies [ 12 , 13 , 59 ] mentioned alternative caregiving approaches like employing a full-time maid or undocumented domestic helper, temporary relocation to the home country, or organizing a care marriage.…”

“…Many caregivers who had experience of using formal services in our review had negative experiences with health care professionals. They had skeptical views about health services/care institutions and felt ignored by the health system, which was not uncommon among family caregivers of the other two review studies on dementia [ 12 , 13 ]. The current review showed caregivers’ stressful experiences with the health system and mentioned that it often failed to address the emotional aspects or what caregiving to their older family members means to them.…”

Different senses of one’s place: Exploring social adjustment to home-based care services among family caregivers from minority ethnic backgrounds who have relatives living with dementia

“…Research suggests that developing culturally sensitive practices is necessary to meet the needs of family caregivers from minority ethnic backgrounds (La Fontaine et al, 2007; Stenberg & Hjelm, 2022). However, as our findings show, the family caregivers participating in this study were not primarily concerned about culturally insensitive practices.…”