‘I wish I had asked for support earlier’ − Immigrant family caregivers' experiences of living with a person with dementia

Abstract

Introduction: Immigrant family caregivers are increasing worldwide, likewise the number of older people with dementia. Caring for a person with dementia is demanding, with the carer's own life put on hold. Immigrant family caregivers have been less studied. Therefore, the aim of this study was to explore immigrant family caregivers' experiences of living with an older person with dementia. Method: A qualitative approach was chosen, consisting of open-ended interviews analysed using qualitative content analysis. The ethical principles of the Helsinki Declaration were applied in the study, which was duly approved by a regional ethics review board. Results: The content analysis resulted in three main categories: (i) the diverse roles of a family caregiver; (ii) the impact of language and culture on daily life and (iii) wish for support from society. Conclusions: Living with a person with dementia is demanding and burdensome and the consequences of working without any rest may increase social isolation and impair quality of life. Immigrants and country-born family caregivers living with a person with dementia seem to have similar care experiences, but immigrant family caregivers seem to receive help rather late due to a lack of information about the services available, language barriers and to financial reasons. A wish for support earlier on in the caring process was expressed, likewise for care services in the participants' native language. The various Finnish associations and peer support were important sources of information about support services. Together with culturally adjusted care services, these could contribute to better access to care, to quality and to equal care.