Experience of UK Latin Americans caring for a relative living with dementia: A qualitative study of family carers

Abstract

Introduction Most studies of the Latin American immigrant experience and care for relatives living with dementia have been in the United States (US). In the United Kingdom (UK), unlike the US, most Latin Americans are first generation immigrants and are a rapidly increasing population. Therefore, we aimed to explore the UK experiences of Latin Americans caring for a relative with dementia. Methods We purposively recruited UK-based Latin American family carers of people with dementia ensuring maximum diversity. We conducted semi-structured qualitative interviews (in English or Spanish) with 11 family carers, stopping recruiting when we reached thematic saturation. We took an inductive thematic analytic approach. Findings Four main themes were identified: (1) Family comes first, particularly older people, leading to an obligation to care; (2) dementia as an illness that is accepted and talked about, which is regarded as positive with close networks but not wider society; (3) difficult behaviours are not the responsibility of the person with dementia, who is often conceptualised as a child; and (4) caring expectations lead to incompatibility with formal services, and a reluctance to leave people with dementia alone. Conclusions Familial obligation is the driver for family carers and acceptance of the illness helped despite adversities. Openness to talk about dementia with close networks was distinctive and helpful, contrasting with wider society, where greater awareness of dementia is needed. Considering the person with dementia as a child did not seem to undermine personhood and enabled maintenance of compassion. The relative with dementia was a priority. There was a lack of culturally and linguistically appropriate services, thus restricting family carers’ ability to fulfil other roles, such as parental.

Living with dementia in Aotearoa New Zealand: Samoan families’ perspectives

“…To fulfil these obligations, some sacrifices were needed around living arrangements and caregiving duties. Similar to a qualitative study on the experience of UK Latin Americans caring for a relative living with dementia, our participants emphasised the importance of fulfilling their familial obligations by providing care (Guerra et al, 2022). A systematic review of published empirical literature by Racine and team (2022) a study by Jacklin et al (2015) on informed dementia caregiving among Indigenous communities in Ontario, Canada, and results from Williams et al (2021) on the impact of dementia among American Samoan elders, strongly supported the findings from this study.…”

“…A more holistic approach to developing assessment tools and protocols for diagnosing dementia, as the LiDiA study is attempting, is clearly needed. Researchers worldwide are emphasising the need for culturally and linguistically appropriate screening tools (Lim et al, 2021), plus dementia information (Huggins et al, 2022) and services for minority ethnic groups (Guerra et al, 2022). For example, findings from a Māori dementia study (Menzies et al, 2021) showed that work embedded in cultural values improved the knowledge and understanding of dementia, known as mate wareware in Māori language, and could usefully inform the assessment of older Māori with cognitive impairment.…”