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‘I wish I had asked for support earlier’: Immigrant family caregivers' experiences of living with a person with dementia
Arcada University of Applied Sciences, Helsinki, Finland.
School of Engineering, Culture and Wellbeing, Arcada University of Applied Sciences, Helsinki, Finland.
University of Skövde, School of Health Sciences. University of Skövde, Digital Health Research (DHEAR). (Familjecentrerad hälsa (FamCeH), Family-Centred Health)ORCID iD: 0000-0002-3519-113X
2023 (English)In: Scandinavian Journal of Caring Sciences, ISSN 0283-9318, E-ISSN 1471-6712, Vol. 37, no 3, p. 710-719Article in journal (Refereed) Published
Abstract [en]

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. 

Place, publisher, year, edition, pages
John Wiley & Sons, 2023. Vol. 37, no 3, p. 710-719
Keywords [en]
dementia, ethnicity, family caregiver, immigrant, qualitative, service needs, support
National Category
Nursing
Research subject
Family-Centred Health
Identifiers
URN: urn:nbn:se:his:diva-22307DOI: 10.1111/scs.13155ISI: 000937693400001PubMedID: 36808759Scopus ID: 2-s2.0-85148521429OAI: oai:DiVA.org:his-22307DiVA, id: diva2:1740766
Note

© 2023 Nordic College of Caring Science.

Correspondence Ann-Christine Goodyear, Arcada University of Applied Sciences, Jan- Magnus Janssonin aukio 1, Helsinki 00560, Finland. Email: anki@bengoodyear.com

This research received no specific grant from any funding agency in the public, commercial, or not-for-profit sectors.

Available from: 2023-03-02 Created: 2023-03-02 Last updated: 2023-09-22Bibliographically approved

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