Ethnoculturally-profiled care: Dementia caregiving targeted towards Middle Eastern immigrants living in Sweden.


  • Eleonor Antelius Centre for Dementia Research (CEDER) National Institute for the Study of Aging and later Life (NISAL) Department of Social and Welfare Studies Linköping University Sweden
  • Charlotta Plejert Centre for Dementia Research (CEDER) National Institute for the Study of Aging and later Life (NISAL) Department of Social and Welfare Studies Linköping University Sweden and Graduate School of Language & Culture in Europe Department of Culture & Communication Linköping University Sweden



dementia, illness perceptions, caregiving, ethnoculturally profiled, acculturation


This study was set out to explore the understanding of dementia as a culturally and socially shaped illness in order to illuminate such perceptions and experience in relation to ethnoculturally profiled dementia care in Sweden. The results indicate, contrary to many other studies (c.f. Conell et al 2009; Flaskerud 2009; Gray et al 2009; Hinton, Franz & Friend 2004) that the perception of dementia and the described meaning of the disease have little (or nothing) to do with decisions regarding formal care. However, cultural norms and traditions in relation to issues of filial piety seem to do. Thus, to understand how different ethnocultural groups might respond to dementia care within a migratory context, the current study illuminate the fact that it is crucial to realize that neither the individual person with dementia, nor larger ethnocultural groups can be placed within a vacuum that seemingly does not change or correlate with surrounding society. 

Author Biographies

Eleonor Antelius, Centre for Dementia Research (CEDER) National Institute for the Study of Aging and later Life (NISAL) Department of Social and Welfare Studies Linköping University Sweden

PhD, university lecturer

Charlotta Plejert, Centre for Dementia Research (CEDER) National Institute for the Study of Aging and later Life (NISAL) Department of Social and Welfare Studies Linköping University Sweden and Graduate School of Language & Culture in Europe Department of Culture & Communication Linköping University Sweden

PhD, docent (assosiate professor)


Antelius, E. (2009). Different Voices – Different Stories. Communication, Identity and Meaning among People with Acquired Brain Damage. Linköping: LiU-Tryck. [PhD diss, Linköping Studies in Arts and Science No. 482/Linköping Dissertations on Health and Society No. 17].

Antelius, E. (forthcoming). Dementia in the Age of Migration: health as cultural continuity?

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(2), 79-94.

Antelius, E. and Traphagan, J. (2015). Ethnocultural Contextualization of Dementia Care: Cross-cultural Perceptions on the Notion of Self. Care Management Journals 16(2), 62-3.

Botsford, J., Clarke, C. and Gibb, C. (2011). Research and Dementia, Caring and Ethnicity: A Review of the Literature. Journal of Research in Nursing 16(5), 437-49.

Cohen, L. (1998). No Ageing in India. Alzheimer’s, The Bad Family and Other Modern Things. Los Angeles: University of California Press.

Cohen, L. (1995). Toward an Anthropology of Senility: Anger, Weakness and Alzheimer’s in Banaras, India. Medical Anthropology Quarterly 9(3), 314-34

Connell, C. and Gibson, G. (1997). Racial, Ethnic, and Cultural Differences in Dementia Caregiving: Review and Analysis. The Gerontologist 37(3), 355-64.

Corbin, J and Morse, J. (2003). The Unstructured Interactive Interview: Issues of Reciprocity and Risks

When Dealing with Sensitive topics. Qualitative Inquiry 9(3), 335-54.

Daker-White, G., Beattie, A., Gilliard, J. and Means, R. (2002). Minority Ethnic Groups in Dementia Care: A

Review of Service Needs, Service Provision and Models of Good Practice. Ageing and Mental Health 6(2), 101-8.

Davey, A., Malmberg, B. and Sundström, G. (2014). Ageing in Sweden: Local Variation, Local Control. The Gerontologist 54(4), 525-32.

Dilworth-Anderson, P., and Gibson, B. (2002). The cultural influence of values, norms, meanings, and

perceptions in understanding dementia in ethnic minorities. Alzheimer Disease and Associated Disorders 16, 56-63.

Dilworth-Anderson, P., Williams, I. and Gibson, B. (2002). Issues of race, ethnicity, and culture in caregiving research: A 20-year review (1980-2000). The Gerontologist 42(2), 237-72.

Ds (2003:47). På väg mot en god demensvård. Samhällets insatser för personer med demenssjukdomar och deras anhöriga [Towards Good Dementia Care. Society’s Efforts for People with Dementia Diseases and Their Relatives], Departementsserien, Ministry of Health and Social Affairs, Government Offices in Sweden.

Ekman, S-L. (1993). Monolingual and Bilingual Communication Between Patients with Dementia Diseases and Their Caregivers. (PhD diss, Umeå University Medical Dissertation, 0346-6612).

Ekman, S-L. (1996). Invandrare och vård vid demens: kommunikation, interaktion och relation i vårdarbetet mellan vårdare och finska invandrare med demenssjukdom [Immigrants and Dementia Care: Communication, Interaction and Relations in Care Work between Carer and Finnish Immigrants with Dementia Diseases]. Socialmedicinsk Tidskrift 7/8, 412-16.

Ekman, S-L., Robins Wahlin, T-B., Viitanen, M, Norberg, A. and Winblad, B. (1994). Preconditions for Communication in the Care of Bilingual Demented Persons. International Psychogeriatrics, 6, (1), 105-20.

Ekman, S-L., Robins Wahlin, T-B., Norberg, A. and Winblad, B. (1993). Relationship Between Bilingual Demented Immigrants and Bilingual/Monolingual Caregivers. International Journal of Ageing and Human Development 37, 37-54.

Emami, A. and Ekman, S-L. (1998). Living in a Foreign Country in Old Age: Elderly Iranian Immigrants’ Experiences of their Social Situation in Sweden. Health Care in Later Life 3: 183-99.

Flaskerud, J. H. (2009). Dementia, Ethnicity, and Culture. Issues in Mental Health Nursing 30, 522-3.

Fry, C.L., Dickerson-Putman, J., Draper, P., Ilkes, C., Keith, J., Glascock, A.P. and Harpending, H.C. (1997). Culture and the Meaning of Good Old Age. E-book:

In J. Sokolowsky (ed) (2009). The Cultural Context of Ageing: Worldwide Perspectives. Westport: Bergin and Garvey, 104.

Geertz, C. (1973). The Interpretation of Culture. New York: Basic Books.

Gray, H. L., Jimenez, D. E.,, Cucciare, M. A., Tong, H.-Q. and

Gallagher-Thompson, D. (2009). Ethnic differences in beliefs regarding alzheimer disease among dementia family caregivers. American Journal of Geriatric Psychiatry 17, 925-33.

Hannerz, U. (1983). Över gränser. [Across Borders]. Lund: LiberFörlag.

Heikkilä, K. (2004). The Role of Ethnicity in Care of Elderly Finnish Immigrants. Stockholm: Baran Tryck.

Heikkilä, K. and Ekman, S-L. (2003). Elderly Care for Ethnic Minorities – Wishes and Expectations among Elderly Finns in Sweden. Ethnicity and Health 8(2), 135-46.

Heikkilä, K. and Ekman, S-L. (2000). Health Care Experiences and Beliefs of Elderly Finnish Immigrants in Sweden. Journal of Transcultural Nursing 11(4), 281-9.

Henderson, N. (2002). The Experience and Interpretation of Dementia: Cross-cultural Perspectives. Journal of Cross-Cultural Gerontology 17(3), 195-6.

Henderson, N. and Carson Henderson, L. (2002). Cultural Construction of a Disease: A ‘Supernormal’ Construct of Dementia in an American Indian Tribe. Journal of Cross-Cultural Gerontology 17(3), 197-212.

Henderson, N. and Traphagan, J. (2005). Cultural Factors in Dementia: Perspectives from the Anthropology of Ageing. Alzheimer Disease & Associated Disorders 19(4), 272-4

Hinton, L., Franz, C. and Friend, J. (2004). Pathways to Dementia Diagnosis: Evidence for Cross-ethnic Differences. Alzheimer Disease and Associated Disorders 18, 134-44.

Hydén, LC. (2014). Cutting Brussels Sprouts: Collaboration Involving Persons with Dementia. Journal of Ageing Studies, 29, 115-23.

Hydén, LC. and Antelius, E. (eds.) (forthcoming). Living with Dementia. Relations, Responses and Agency in Everyday Life. Palgrave MacMillan.

Hydén, LC., Lindeman, H. and Brockmeier, J. (2014). Beyond Loss. Dementia, Identity, Personhood. New York: Oxford University Press.

Hydén, L. C., and Örulv, L. (2009). Narrative and Identity in Alzheimer's disease: A Case Study. Journal of Ageing Studies, 23(4), 205-14.

Holstein, J. and Gubrium, J. (2004). The Self We Live By. Narrative Identity in a Postmodern World. New York: Oxford University Press.

Innes, A. (2001). The Importance of Cultural Competence in Dementia Care. Journal of Dementia Care 9(5), 26-7.

Innes, A., Archibald, C. and Murphy, C. (eds) (2004). Dementia and Social Inclusion. Marginalised Groups and Marginalised Areas of Dementia Research, Care and Practice. London: Jessica Kingsley Publishers.

Janevic, M. R., and Connell, C. M. (2001). Racial, Ethnic, and Cultural Differences in the Dementia Caregiving Experience: Recent Findings. The Gerontologist 41, 334-47.

Kitwood, T. (1997). Dementia Reconsidered. The Person Comes First. Philadelphia: Open University Press.

Kiwi, M., Hydén, LC. and Antelius, E. (forthcoming). Deciding upon Transition to Residential Care: Why do

Iranian Family Caregivers Cease Caregiving at Home?

Kleinman, A. (1988). The Illness Narratives. New York: Basic Books.

Kovarsky, D. and Crago, M. (1990-1991). Toward the Ethnography of Communication Disorders. National Student Speech Language Hearing Association Journal 18, 44-55.

Landrine, H. and Klonoff, EA. (2004). Culture Change and Ethnic-minority Health Behaviour: An Operant Theory of Acculturation. Journal of Behavioural Medicine 27(6), 527-55.

Larsson, E. and Imai, Y. (1996). An Overview of Dementia and Ethnicity with Special Emphasis on the Epidemiology of Dementia. In Yeo and Gallagher-Thompsons (eds.) Ethnicity and the Dementias, 9-20. Washington DC: Taylor & Francis.

Leibing, A. (2002). Flexible Hips? On Alzheimer’s Disease and Ageing in Brazil. Journal of Cross-Cultural Gerontology 17(3), 213-32.

Leibing, A. and Cohen, L. (eds.) (2006). Thinking about Dementia. Culture, Loss, and the Anthropology of Senility. New Jersey: Rutgers University Press.

Lyman, K. (1989). Bringing the Social Back in: A critique of the Biomedicalization of Dementia. The

Gerontologist 29, 597-605.

Mackenzie, J., Bartlett, R. and Downs, M. (2005). Have We Been Barking up the Wrong Tree? Moving Towards Culturally Competent Dementia Care. Reviews in Clinical Gerontology, 15, 39-46

Marcusson, J., Blennow, K., Skoog, I. and Wallin, A. (2011). Alzheimers sjukdom och andra kognitiva sjukdomar [Alzheimer’s Disease and Other Cognitive Diseases]. Stockholm: Liber AB.

Mazaheri, M. (2013). Dementia in Iran and Sweden: Experiences of Persons with Dementia and Family Members. Stockholm: Universitetsservice AB. (PhD diss, Dept. of Neurobiology, Care Sciences and Society, Karolinska Institutet, Stockholm, Sweden)

Mishler, E. (1986). Research Interviewing: Context and Narrative. Cambridge: Harvard University Press.

Mukadam, N., Cooper, C. and Livingstone, G. (2011). A Systematic Review of Ethnicity and Pathways to Care in Dementia. International Journal of Geriatric Psychiatry 26(1), 12–20.

Næss, A. and Moen, B. (2015). Dementia and Migration: Pakistani Immigrants in the Norwegian Welfare

State. Ageing & Society 35(8), 1713-38.

O’Connor, D., Phinney, A., Smith, A., Small, J., Purves, B., Perry, J., Drance, E., Donnelly, M., Chaudhury,

H. and Beattie, L. (2007). Personhood in Dementia Care: Developing a Research Agenda for Broadening the Vision. Dementia 6, 121-42.

Redfield, R., Linton, R. and Herskovits, M. J. (1936). Memorandum for the Study of Acculturation. Amercian

Anthropologist 38, 149-52.

Riessman, C. (2008). Narrative Methods for the Human Sciences. Thousand Oaks: Sage Publications Inc.

SBU 172E/3. (2008). Dementia – Caring, Ethics, Ethnical and Economical Aspects. A Systematic Review. The Swedish Council on Technology Assessment in Health Care.

SOU (1984:58). Invandrar- och minoritetspolitiken. Slutbetänkande av Invandrarpolitiska kommittén. [Immigrant and Minority Politics. Final Report from the Committee of Immigration Policy].

Strandroos and Antelius, (forthcoming). Shared Language is No Quick Fix: Communication and Interaction at a Dementia Care Facility.

Sundström, G. (2009). Demography of Ageing in the Nordic countries. In P. Uhlenberg (Ed) International Handbook of Population Ageing, 91-111. New York: Springer.

Socialstyrelsen (2010). Nationella riktlinjer för vård och omsorg vid demenssjukdom 2010 – Stöd för styrning och ledning. [National Guidelines for Dementia Care 2010 – Support for Guidance and Management]. Stockholm: The National Board of Health and Welfare.

Toombs, K. (ed) (2001). Handbook on Phenomenology and Medicine. Dordrecht: Kluwer Academic Publishers.

Toombs, K. (1995). The Lived Experience of Disability. Human Studies 18(1), 9-23.

Torres, S. (2002). Relational Values and Ideas Regarding ‘Successful Ageing’. Journal of Comparative Family Studies 33(3), 417-31.

Traphagan, J. (2009). Brain Failure. Late Life and Culture in Japan. In J. Sokolovskys (ed) The Cultural

Context of Ageing. Worldwide Perspectives. Westport: Praeger Publishers, 568-75.

Traphagan, J. (2005). Interpreting Senility: Cross-cultural Perspectives. Care Management Journals 6(3), 145-50.

Traphagan, J. (2002). Senility as Disintegrated Person in Japan. Journal of Cross-Cultural Gerontology 17(3), 253-67.

Valle, R. (1998). Caregiving Across Cultures: Working with Dementing Illness and Ethnically Diverse Populations. Washington DC: Taylor & Francis.

Yeo, G. and Gallagher-Thompson, D. (eds) (1996). Ethnicity and the Dementias. Washington DC: Taylor & Francis.

Zubair, M. and Norris, M. (2015). Perspectives on Ageing, Later Life and Ethnicity: Ageing Research in Ethnic Minority Contexts). Ageing & Society 35(5), 897-916.

Örulv, L. (2008). Fragile Identities, Patched-up Worlds. Dementia and Meaning-making in Social Interaction. Linköping: LiU-Tryck [PhD diss, Linköping Studies in Arts and Science No. 428/Linköping Dissertations on Health and Society No. 12].



2016-12-08 — Updated on 2023-04-05