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Understanding dementia in ethnically diverse groups: a qualitative study from Norway

Published online by Cambridge University Press:  27 May 2019

Mette Sagbakken ,
Ragnhild Storstein Spilker  and
Reidun Ingebretsen
Mette Sagbakken*
Affiliation:
Department of Nursing and Health Promotion, Faculty of Health Sciences, OsloMet – Oslo Metropolitan University, Oslo, Norway
Ragnhild Storstein Spilker
Affiliation:
Unit for Migration and Health, Norwegian Institute of Public Health, Oslo, Norway
Reidun Ingebretsen
Affiliation:
Norwegian Social Research (NOVA), OsloMet – Oslo Metropolitan University, Oslo, Norway
*
*Corresponding author. Email: [email protected]
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Abstract

As the number of older immigrants in Europe rises, dementia within minority ethnic populations warrants attention as a significant public health problem. Equitable health and care services constitute a prioritised health policy aim on both supranational and national levels in Europe and is formulated in the Norwegian health legislation. Through interviews and focus groups with older immigrants, relatives of immigrants with dementia and health personnel, we explored the perceptions of dementia among ethnically diverse groups in Norway. The findings show that many interpret symptoms such as memory loss and disorientation as a natural part of ageing. Others consider dementia symptoms to have a psycho-social origin, deriving from social isolation. Some describe symptoms as an expression of a potentially transient sign of madness, while others point to destiny and God's will, representing basic and unalterable causes. However, another pattern of perception includes viewing dementia as a potentially transient physical illness, including a belief in a medical cure. By investigating how people with dementia and their families understand and manage the condition, one may facilitate access to relevant and adapted information. Furthermore, by exploring how people relate to their illness, health personnel may challenge explanatory models that create unrealistic expectations of cure, as well as models that, due to stigma or normalisation of symptoms, prevent the use of public care.

Keywords

dementiacognitive impairmentperceptionsmanagementdiversityminority ethnic groups
Type
Article
Information
Ageing & Society , Volume 40 , Issue 10 , October 2020 , pp. 2191 - 2214
Copyright
Copyright © Cambridge University Press 2019

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References

Antelius, E and Kiwi, M (2015) Frankly, none of us know what dementia is: dementia caregiving among Iranian immigrants living in Sweden. Care Management Journals 16, 79–94.CrossRefGoogle ScholarPubMed
Antelius, E and Plejert, C (2016) Ethnoculturally-profiled care: dementia caregiving targeted towards Middle Eastern immigrants living in Sweden. Anthropology and Aging 37, 9–26.CrossRefGoogle Scholar
Barth, F (1969) Introduction. In Barth, F (ed.), Ethnic Groups and Boundaries: The Social Organization of Culture Difference. Boston, MA: Little, Brown and Company, pp. 9–38.Google Scholar
Bell, E (2015) Ethnicity versus culture. In Smith AD, Hou X, Stone J, Dennis R and Rizova P (eds), The Wiley Blackwell Encyclopedia of Race, Ethnicity, and Nationalism. doi:10.1002/9781118663202.wberen578Google Scholar
Botsford, J, Clarke, CL and Gibb, CE (2011) Research and dementia, caring and ethnicity: a review of the literature. Journal of Research in Nursing 16, 437–449.CrossRefGoogle Scholar
Bowes, A and Wilkinson, H (2003) ‘We didn't know it would get that bad’: South Asian experiences of dementia and the service response. Health & Social Care in the Community 11, 387–396.CrossRefGoogle ScholarPubMed
Daker-White, G, Beattie, AM, Gilliard, J and Means, R (2002) Minority ethnic groups in dementia care: a review of service needs, service provision and models of good practice. Aging & Mental Health 6, 101–108.CrossRefGoogle ScholarPubMed
Diaz, E, Kumar, BN and Engedal, K (2015) Immigrant patients with dementia and memory impairment in primary health care in Norway: a national registry study. Dementia and Geriatric Cognitive Disorders 39, 321–331.CrossRefGoogle ScholarPubMed
Good, BJ (1994) Medicine, Rationality and Experience. An Anthropological Perspective. New York, NY: Cambridge University Press.Google Scholar
Goral, M and Conner, PS (2013) Language disorders in multilingual and multicultural populations. Annual Review of Applied Linguistics 33, 128–161.CrossRefGoogle ScholarPubMed
Helman, CG (2007) Culture, Health and Illness, 5th Edn. London: Hodder Arnold.Google Scholar
Henderson, JN and Henderson, LC (2002) Cultural construction of disease: a ‘supernormal’ construct of dementia in an American Indian tribe. Journal of Cross-cultural Gerontology 17, 197–212.CrossRefGoogle Scholar
Hinton, L, Franz, CE, Yeo, G and Levkoff, SE (2005) Conceptions of dementia in a multiethnic sample of family caregivers. Journal of the American Geriatrics Society 53, 1405–1410.CrossRefGoogle Scholar
Jang, Y, Kim, G and Chiriboga, D (2010) Knowledge of Alzheimer's disease, feelings of shame, and awareness of services among Korean American elders. Journal of Aging and Health 22, 419–433.CrossRefGoogle Scholar
Johl, N, Patterson, T and Pearson, L (2014) What do we know about the attitudes, experiences and needs of Black and minority ethnic carers of people with dementia in the United Kingdom? A systematic review of empirical research findings. Dementia 15, 721–742.CrossRefGoogle ScholarPubMed
Jutlla, K (2013) Ethnicity and cultural diversity in dementia care: review of the research. Journal of Dementia Care 21, 33–39.Google Scholar
Kleinman, A (1980) Patients and Healers in the Context of Culture. Berkeley, CA: University of California Press.CrossRefGoogle Scholar
Kleinman, A (1988) The Illness Narratives: Suffering, Healing, and the Human Condition. New York, NY: Basic Books.Google Scholar
Krilic, SC (2013) The study of ageing in migration studies and social gerontology. Dve Domovini 39, 99–112.Google Scholar
Kvale, S and Brinkmann, S (2015) InterViews: Learning the Craft of Qualitative Research Interviewing. Thousands Oaks, CA: Sage.Google Scholar
Leknes, S, Løkken, SA, Syse, A and Tønnessen, M (2018) Befolkningsframskrivingene 2018. Modeller, forutsetninger og resultater [The Population Projections 2018. Models, Presumptions and Results] (Report No. 2018/21). Oslo: Statistisk Sentralbyrå (Statistics Norway).Google Scholar
Livingston, G, Sommerlad, A, Orgeta, V, Costafreda, SG, Huntley, J, Ames, D, Ballard, C, Banerjee, S, Burns, A, Cohen-Mansfield, J, Cooper, C, Fox, N, Gitlin, LN, Howard, R, Kales, HC, Larson, EB, Ritchie, K, Rockwood, K, Sampson, EL, Samus, Q, Schneider, LS, Selbæk, G, Teri, L and Mukadam, N (2017) Dementia prevention, intervention, and care. The Lancett. 390, 2673–2734 Available a https://www.thelancet.com/journals/lancet/article/PIIS0140-6736(17)31363-6/fulltext.CrossRefGoogle Scholar
MacKenzie, J (2006) Stigma and dementia: East European and South Asian family carers negotiating stigma in the UK. Dementia 5, 233–247.CrossRefGoogle Scholar
Mahoney, DF, Cloutterbuck, J, Neary, S and Zhan, L (2005) African American, Chinese, and Latino family caregivers’ impressions of the onset and diagnosis of dementia: cross-cultural similarities and differences. The Gerontologist 45, 783–792.CrossRefGoogle ScholarPubMed
Malterud, K (2012) Fokusgrupper som Forskningsmetode for Medisin og Helsefag [Focus Groups as a Research Method for Medicine and Health Education]. Oslo: Universitetsforlaget.Google Scholar
Mazaheri, M, Eriksson, LE, Nasrabadi, AN, Sunvisson, H and Heikkilä, K (2014) Experiences of dementia in a foreign country: qualitative content analysis of interviews with people with dementia. BMC Public Health 14, 794.CrossRefGoogle Scholar
Mladovsky, P (2011) Migrant health policies in Europe. In Rechel, B, Mladovsky, P, Devillé, W, Rijks, B, Petrova-Benedict, R and McKee, M (eds), Migration and Health in the European Union (European Observatory on Health Systems and Policies). Maidenhead, UK: Open University Press, pp. 185–201.Google Scholar
Morhardt, D, Pereyra, M and Iris, M (2010) Seeking a diagnosis for memory problems: the experiences of caregivers and families in 5 limited English proficiency communities. Alzheimer Disease & Associated Disorders 24, 42–48.Google ScholarPubMed
Mukadam, N, Cooper, C, Basit, B and Livingston, G (2011 a) Why do ethnic elders present later to UK dementia services? A qualitative study. International Psychogeriatrics 2, 1070–1077.CrossRefGoogle Scholar
Mukadam, N, Cooper, C and Livingston, G (2011 b) A systematic review of ethnicity and pathways to care in dementia. International Journal of Geriatric Psychiatry 26, 12–20.CrossRefGoogle ScholarPubMed
Næss, A and Moen, B (2015) Dementia and migration: Pakistani immigrants in the Norwegian welfare state. Ageing & Society 35, 1713–1738.CrossRefGoogle Scholar
Nielsen, TR, Vogel, A, Phung, TKT, Gade, A and Waldemar, G (2010) Over- and under-diagnosis of dementia in ethnic minorities: a nationwide register-based study. International Journal of Geriatric Psychiatry 26, 1128–1135.Google ScholarPubMed
Nielsen, TR and Waldemar, G (2016) Knowledge and perceptions of dementia and Alzheimer's disease in four ethnic groups in Copenhagen, Denmark. International Journal of Geriatric Psychiatry 31, 222–230.CrossRefGoogle ScholarPubMed
Norwegian Directorate of Health (2015) Alzheimers og andre demenssykdommer [Alzheimers and Other Dementia-related Disorders]. Available at https://helsenorge.no/Sykdom/Hjerne-Og-Nerver/Demens/Demenssykdommer.Google Scholar
Norwegian Institute of Public Health (2014) Dementia in Norway. Public Health Report 2014. Available at https://www.fhi.no/en/op/public-health-report-2014/health--disease/dementia-in-Norway---public-health-/#how-much-will-the-occurrence-increase-during-the-years-to-come.Google Scholar
Patton, MQ (2002) Qualitative Research and Evaluation Methods. Thousands Oaks, CA: Sage.Google Scholar
Prince, M, Bryce, R, Albanese, E, Wimo, A, Ribeiro, W and Ferri, CP (2013) The global prevalence of dementia: a systematic review and metaanalysis. Alzheimer's & Dementia: The Journal of the Alzheimer's Association 9, 63–75.CrossRefGoogle ScholarPubMed
Regan, JL, Bhattacharyya, S, Kevern, P and Rana, T (2013) A systematic review of religion and dementia care pathways in black and minority ethnic populations. Mental Health, Religion & Culture 16, 1–15.CrossRefGoogle Scholar
Robinson, I (1990) Personal narratives, social careers and medical courses: analyzing life trajectories in autobiographies of people with multiple sclerosis. Social Science and Medicine 30, 1173–1186.CrossRefGoogle Scholar
Schiller, NG, Basch, L and Blanc, CS (1995) From immigrant to transmigrant: theorizing transnational migration. Anthropological Quarterly 68, 48–63.CrossRefGoogle Scholar
Ministry of Health and Care Services (1999) Pasient-og brukerrettighetsloven [Patient's Rights Act] and Helsepersonellloven [Health Personnel Act]. Available at https://lovdata.no/register/lover?ministry=Helse-+og+omsorgsdepartementetGoogle Scholar
Ministry of Health and Care Services (2008) Helseforskningsloven [Health Research Act]. Available at https://lovdata.no/register/lover?ministry=Helse-+og+omsorgsdepartementetGoogle Scholar
Uppal, G and Bonas, S (2014) Constructions of dementia in the South Asian community: a systematic literature review. Mental Health, Religion & Culture 17, 143–160.CrossRefGoogle Scholar