TY - JOUR

T1 - Rotational care practices in minority ethnic families managing dementia

T2 - A qualitative study

AU - Nielsen, T. Rune

AU - Waldemar, Gunhild

AU - Nielsen, Dorthe S.

N1 - Publisher Copyright: © The Author(s) 2020.

PY - 2021/4

Y1 - 2021/4

N2 - Background: Although minority ethnic families have a lower uptake of dementia care services, little research has explored how minority ethnic carers cope with and manage dementia care in their everyday lives. The aim of this study was to investigate organization of family dementia care in Turkish, Pakistani, and Arabic speaking minority ethnic families from the perspective of family carers, primary care dementia coordinators, and multicultural link workers in Denmark. Methods: Semi-structured qualitative individual and group interviews with minority ethnic family carers, primary care dementia coordinators, and multicultural link workers. Hermeneutic phenomenology was used as theoretical framework and results were analyzed using thematic analysis. Results: A total of 21 individual and four group interviews were conducted, including a total of 30 participants. A key finding was that the care responsibility was usually shared between several family members, who took turns to provide 24-hour care for the person with dementia. Rotational 24-hour care, either by having the person with dementia live with different family members or by having different family members take turns to move in with the person with dementia, emerged as a common alternative to formal care. Another important finding was that despite decreasing the burden of care of individual family carers, rotational care could be confusing and stressful to the person with dementia and could have a negative impact on the quality of life of all involved. Conclusion: The way minority ethnic families organize dementia care have implications for understanding and communicating about support needs. Higher reliance on shared family care should not be taken to indicate that minority ethnic communities are not in need of support from formal services.

AB - Background: Although minority ethnic families have a lower uptake of dementia care services, little research has explored how minority ethnic carers cope with and manage dementia care in their everyday lives. The aim of this study was to investigate organization of family dementia care in Turkish, Pakistani, and Arabic speaking minority ethnic families from the perspective of family carers, primary care dementia coordinators, and multicultural link workers in Denmark. Methods: Semi-structured qualitative individual and group interviews with minority ethnic family carers, primary care dementia coordinators, and multicultural link workers. Hermeneutic phenomenology was used as theoretical framework and results were analyzed using thematic analysis. Results: A total of 21 individual and four group interviews were conducted, including a total of 30 participants. A key finding was that the care responsibility was usually shared between several family members, who took turns to provide 24-hour care for the person with dementia. Rotational 24-hour care, either by having the person with dementia live with different family members or by having different family members take turns to move in with the person with dementia, emerged as a common alternative to formal care. Another important finding was that despite decreasing the burden of care of individual family carers, rotational care could be confusing and stressful to the person with dementia and could have a negative impact on the quality of life of all involved. Conclusion: The way minority ethnic families organize dementia care have implications for understanding and communicating about support needs. Higher reliance on shared family care should not be taken to indicate that minority ethnic communities are not in need of support from formal services.

KW - dementia

KW - ethnicity

KW - family care

KW - minority

KW - rotational care

U2 - 10.1177/1471301220914751

DO - 10.1177/1471301220914751

M3 - Journal article

C2 - 32208745

AN - SCOPUS:85082432894

VL - 20

SP - 884

EP - 898

JO - Dementia

JF - Dementia

SN - 1471-3012

IS - 3

ER -