Skip to main content
Top
Published in: BMC Health Services Research 1/2020

Open Access 01-12-2020 | Care | Research article

“It is always me against the Norwegian system.” barriers and facilitators in accessing and using dementia care by minority ethnic groups in Norway: a qualitative study

Authors: Elżbieta Anna Czapka, Mette Sagbakken

Published in: BMC Health Services Research | Issue 1/2020

Login to get access

Abstract

Background

Dementia is one of the greatest health challenges in the contemporary world. Due to several barriers to accessing health care services, elderly immigrants constitute a group that poses special challenges in dementia diagnosis and treatment. The aim of this study was to explore the barriers and facilitators in accessing and using dementia care services by minority ethnic groups in Norway.

Methods

The study utilised a qualitative design. The participants included family caregivers of individuals from minority ethnic groups living with dementia, representatives of immigrant communities, and representatives of health and care personnel working with people living with dementia. Individual semi-structured in-depth interviews were carried out in 2018 and 2019 in Oslo and Akershus. Interviews were analysed using thematic analyses.

Results

Several barriers and facilitators in accessing and using dementia care services were identified, the most important of which were related to lack of knowledge of dementia, lack of awareness of dementia care services, lack of language skills, culturally based differences, the organisation of Norwegian dementia care services, and immigrants’ socio-economic status. According to the study participants, having health care personnel in the family and further adaptation of dementia services to the needs of people with different cultural and linguistic backgrounds facilitate access to dementia services.

Conclusions

The study shows the need to develop inclusive policies that promote a patient-centred approach to ensure that individuals from minority ethnic groups receive appropriate dementia care.
Appendix
Available only for authorised users
Footnotes
1
The concept of habitus was developed by Bourdieu. It refers to embodiment of cultural representations in human habits and routines. People’s behaviour and thinking are guided by socialised norms.
 
Literature
1.
go back to reference World population ageing, 1950–2050. United nations, Department of Economic and Social Affairs, Population Division, issue 207. 2002. World population ageing, 1950–2050. United nations, Department of Economic and Social Affairs, Population Division, issue 207. 2002.
9.
go back to reference Dubois B, Padovani A, Scheltens P, Rossi A, Dell’Agnello G. Timely diagnosis for Alzheimer’s disease: a literature review on benefits and challenges. J Alzheimers Dis. 2016;49(3):617–31.CrossRef Dubois B, Padovani A, Scheltens P, Rossi A, Dell’Agnello G. Timely diagnosis for Alzheimer’s disease: a literature review on benefits and challenges. J Alzheimers Dis. 2016;49(3):617–31.CrossRef
10.
go back to reference Sardella A. Mild cognitive impairment: still a controversial stage between normal cognitive ageing and dementia. MOJ Gerontol Geriatrics. 2017;2(2):215–6.CrossRef Sardella A. Mild cognitive impairment: still a controversial stage between normal cognitive ageing and dementia. MOJ Gerontol Geriatrics. 2017;2(2):215–6.CrossRef
11.
go back to reference Fox C, Lafortune L, Boustani M, Brayne C. The pros and cons of early diagnosis in dementia. Brit J Gen Pract. 2013;63:510–2.CrossRef Fox C, Lafortune L, Boustani M, Brayne C. The pros and cons of early diagnosis in dementia. Brit J Gen Pract. 2013;63:510–2.CrossRef
12.
go back to reference Sagbakken M, Storstein Spilker R, Ingebretsen R. Dementia and migration: family care patterns merging with public care services. Qual Health Res. 2018;28(1):16–29.CrossRef Sagbakken M, Storstein Spilker R, Ingebretsen R. Dementia and migration: family care patterns merging with public care services. Qual Health Res. 2018;28(1):16–29.CrossRef
14.
go back to reference Nielsen TR, Vogel A, Phung TK, Gade A, Waldemar G. Over- and underdiagnosis of dementia in ethnic minorities: a nationwide register-based study. Int J Geriatr Psychiatry. 2010;26:1128–35.PubMed Nielsen TR, Vogel A, Phung TK, Gade A, Waldemar G. Over- and underdiagnosis of dementia in ethnic minorities: a nationwide register-based study. Int J Geriatr Psychiatry. 2010;26:1128–35.PubMed
15.
go back to reference Hinton L, Franz C, Friend J. Pathways to dementia diagnosis: evidence for cross-ethnic differences. Alzheimer Dis Assoc Disord. 2004;18:134–44.CrossRef Hinton L, Franz C, Friend J. Pathways to dementia diagnosis: evidence for cross-ethnic differences. Alzheimer Dis Assoc Disord. 2004;18:134–44.CrossRef
17.
go back to reference Watari KF, Gatz M. Pathways to care for Alzheimer’s disease among Korean Americans. Cultur Divers Ethnic Minor Psychol. 2004;10:23–38.CrossRef Watari KF, Gatz M. Pathways to care for Alzheimer’s disease among Korean Americans. Cultur Divers Ethnic Minor Psychol. 2004;10:23–38.CrossRef
19.
go back to reference Stevnsborg L, Jensen-Dahm C, Nielsen TR, Gasse C, Waldemar G. Inequalities in access to treatment and Care for Patients with dementia and immigrant background: a Danish Nationwide study. J Alzheimers Dis. 2016;54:505–14.CrossRef Stevnsborg L, Jensen-Dahm C, Nielsen TR, Gasse C, Waldemar G. Inequalities in access to treatment and Care for Patients with dementia and immigrant background: a Danish Nationwide study. J Alzheimers Dis. 2016;54:505–14.CrossRef
20.
go back to reference Diaz E, Kumar BN, Engedal K. Immigrant patients with dementia and memory impairment in primary health care in Norway: a national registry study. Dement Geriatr Cogn Disord. 2015;39:321–31.CrossRef Diaz E, Kumar BN, Engedal K. Immigrant patients with dementia and memory impairment in primary health care in Norway: a national registry study. Dement Geriatr Cogn Disord. 2015;39:321–31.CrossRef
21.
go back to reference Cooper C, Tandy AR, Balamurali TB, Livingston G. A systematic review and meta-analysis of ethnic differences in use of dementia treatment, care, and research. Am J Geriatr Psychiatry. 2010;18(3):193–203.CrossRef Cooper C, Tandy AR, Balamurali TB, Livingston G. A systematic review and meta-analysis of ethnic differences in use of dementia treatment, care, and research. Am J Geriatr Psychiatry. 2010;18(3):193–203.CrossRef
22.
go back to reference Gil-Gonzalez D, Carrasco-Portino M, Vives-Cases C, et al. Is health a right for all? An umbrella review of the barriers to health care access faced by migrants. Ethnicity Health. 2015;20(5):523–41.CrossRef Gil-Gonzalez D, Carrasco-Portino M, Vives-Cases C, et al. Is health a right for all? An umbrella review of the barriers to health care access faced by migrants. Ethnicity Health. 2015;20(5):523–41.CrossRef
23.
go back to reference Diaz E, Calderón-Larrañaga A, Prado-Torres A, Poblador-Plou B, Gimeno-Feliu LA. How do immigrants use primary health care services? A register-based study in Norway. Eur J Pub Health. 2014;25(1):72–8.CrossRef Diaz E, Calderón-Larrañaga A, Prado-Torres A, Poblador-Plou B, Gimeno-Feliu LA. How do immigrants use primary health care services? A register-based study in Norway. Eur J Pub Health. 2014;25(1):72–8.CrossRef
24.
go back to reference Hiam L, Gionakis N, Holmes SM, McKee M. Overcoming the barriers migrants face in accessing health care. Public Health. 2019;172:89–92.CrossRef Hiam L, Gionakis N, Holmes SM, McKee M. Overcoming the barriers migrants face in accessing health care. Public Health. 2019;172:89–92.CrossRef
25.
go back to reference Arora S, et al. Older migrants’ access to healthcare: a thematic synthesis. Int Int J Migr Health Soc Care. 2018;14(4):425–38. Arora S, et al. Older migrants’ access to healthcare: a thematic synthesis. Int Int J Migr Health Soc Care. 2018;14(4):425–38.
33.
go back to reference Nielsen TR, et al. Dementia care for people from ethnic minorities: a Nordic perspective. Int J Geriatr Psychiatry. 2015;30:217–22.CrossRef Nielsen TR, et al. Dementia care for people from ethnic minorities: a Nordic perspective. Int J Geriatr Psychiatry. 2015;30:217–22.CrossRef
34.
go back to reference Roulston K. Reflective interviewing: a guide to theory and practice. London: Sage; 2010.CrossRef Roulston K. Reflective interviewing: a guide to theory and practice. London: Sage; 2010.CrossRef
35.
go back to reference Braun V, Clarke V. Using thematic analysis in psychology. Qual Res Psychol. 2006;3(2):77–101.CrossRef Braun V, Clarke V. Using thematic analysis in psychology. Qual Res Psychol. 2006;3(2):77–101.CrossRef
36.
37.
go back to reference Crenshaw K. Demarginalizing the intersection of race and sex: A black feminist critique of antidiscrimination doctrine, feminist theory, and antiracist politics. Univ Chic Leg Forum. 1989:139–67. Crenshaw K. Demarginalizing the intersection of race and sex: A black feminist critique of antidiscrimination doctrine, feminist theory, and antiracist politics. Univ Chic Leg Forum. 1989:139–67.
38.
go back to reference Spitzer DL, Torres S, Zwi AB, Khalema EN, Palaganas E. Towards inclusive migrant healthcare. BMJ. 2019;366:l4256.CrossRef Spitzer DL, Torres S, Zwi AB, Khalema EN, Palaganas E. Towards inclusive migrant healthcare. BMJ. 2019;366:l4256.CrossRef
39.
go back to reference Hill Collins P, Bilge S. Intersectionality. Polity Press; 2019. Hill Collins P, Bilge S. Intersectionality. Polity Press; 2019.
40.
go back to reference Parveen S, Peltier C, Oyebode JR. Perceptions of dementia and use of services in minority ethnic communities: a scoping exercise. Health Soc Care Commun. 2017;25(2):734–42.CrossRef Parveen S, Peltier C, Oyebode JR. Perceptions of dementia and use of services in minority ethnic communities: a scoping exercise. Health Soc Care Commun. 2017;25(2):734–42.CrossRef
41.
go back to reference Giebel CM, Sutcliffe C, Stolt M, Karlsson S, Renom-Guiteras A, Soto M, Verbeek H, Zabalegui A. Right time place care consortium, T, & challis D. deterioration of basic activities of daily living and their impact on quality of life across different cognitive stages of dementia: a European study. Int Psychogeriatr. 2014;26(8):1283–93. https://doi.org/10.1017/S1041610214000775.CrossRefPubMed Giebel CM, Sutcliffe C, Stolt M, Karlsson S, Renom-Guiteras A, Soto M, Verbeek H, Zabalegui A. Right time place care consortium, T, & challis D. deterioration of basic activities of daily living and their impact on quality of life across different cognitive stages of dementia: a European study. Int Psychogeriatr. 2014;26(8):1283–93. https://​doi.​org/​10.​1017/​S104161021400077​5.CrossRefPubMed
42.
go back to reference Mukadam N, Cooper C, Livingston G. A systematic review of ethnicity and pathways to care in dementia. Int J Geriatr Psychiatry. 2011;26(1):12–20.CrossRef Mukadam N, Cooper C, Livingston G. A systematic review of ethnicity and pathways to care in dementia. Int J Geriatr Psychiatry. 2011;26(1):12–20.CrossRef
43.
go back to reference Wang D. Caregiving for dementia in Asian communities: implications for practice. J Ethn Cult Divers Soc Work. 2012;21(3):249–73.CrossRef Wang D. Caregiving for dementia in Asian communities: implications for practice. J Ethn Cult Divers Soc Work. 2012;21(3):249–73.CrossRef
44.
go back to reference Lorant V, Bhopal RS. Ethnicity, socio-economic status and health research: insights from and implications of Charles Tilly's theory of Durable Inequality. J Epidemiol Commun Health. 2011;65:671–5.CrossRef Lorant V, Bhopal RS. Ethnicity, socio-economic status and health research: insights from and implications of Charles Tilly's theory of Durable Inequality. J Epidemiol Commun Health. 2011;65:671–5.CrossRef
48.
go back to reference Czapka E, Sagbakken M. “Where to find those doctors?” A qualitative study on barriers and facilitators in access to and utilization of health care services by Polish migrants in Norway. BMC Health Serv Res. 2016;16:460.CrossRef Czapka E, Sagbakken M. “Where to find those doctors?” A qualitative study on barriers and facilitators in access to and utilization of health care services by Polish migrants in Norway. BMC Health Serv Res. 2016;16:460.CrossRef
49.
go back to reference Fiscella K, Franks P, Doescher MP, Saver BG. Disparities in health care by race, ethnicity, and language among the insured findings from a National Sample. Med Care. 2002;40(1):52–9.CrossRef Fiscella K, Franks P, Doescher MP, Saver BG. Disparities in health care by race, ethnicity, and language among the insured findings from a National Sample. Med Care. 2002;40(1):52–9.CrossRef
50.
go back to reference Daker-White G, Beattie AM, Gilliard J, Means R. Minority ethnic groups in dementia care: a review of service needs, service provision and models of good practice. Aging Ment Health. 2002;6(2):101–8.CrossRef Daker-White G, Beattie AM, Gilliard J, Means R. Minority ethnic groups in dementia care: a review of service needs, service provision and models of good practice. Aging Ment Health. 2002;6(2):101–8.CrossRef
52.
go back to reference Rivera MM, Arentoft A, Kubo Germano K, D’Aquila E, Scheiner D, Pizzirusso M, Sandoval TC, Gollan TH. Neuropsychological, cognitive, and theoretical considerations for evaluation of bilingual individuals. Neuropsychol Rev. 2008;18:255–68.CrossRef Rivera MM, Arentoft A, Kubo Germano K, D’Aquila E, Scheiner D, Pizzirusso M, Sandoval TC, Gollan TH. Neuropsychological, cognitive, and theoretical considerations for evaluation of bilingual individuals. Neuropsychol Rev. 2008;18:255–68.CrossRef
53.
go back to reference Hochschild AR. The commercialization of intimate life: notes from home and work. Berkeley, CA, University of California Press; 2003. Hochschild AR. The commercialization of intimate life: notes from home and work. Berkeley, CA, University of California Press; 2003.
54.
go back to reference Park RE. Human migration and the marginal man. Am J Soc. 1928;33(6):881–93.CrossRef Park RE. Human migration and the marginal man. Am J Soc. 1928;33(6):881–93.CrossRef
55.
go back to reference Jang J, Kim G, Chiriborga D. Knowledge of Alzheimer’s disease, feelings of shame, and awareness of services among Korean American elders. J Aging Health. 2010;22(4):419–33.CrossRef Jang J, Kim G, Chiriborga D. Knowledge of Alzheimer’s disease, feelings of shame, and awareness of services among Korean American elders. J Aging Health. 2010;22(4):419–33.CrossRef
58.
go back to reference Moriarty J, Sharif N, Robinson J. Black and minority ethnic people with dementia and their access to support and services: research briefing. London: Social Care Institute for Excellence; 2011. Moriarty J, Sharif N, Robinson J. Black and minority ethnic people with dementia and their access to support and services: research briefing. London: Social Care Institute for Excellence; 2011.
59.
go back to reference St. John T. Hidden shame – A review of the needs of Asian elders with dementia and their carers in a Kent community. J Integrated Care. 2004;12:20–6.CrossRef St. John T. Hidden shame – A review of the needs of Asian elders with dementia and their carers in a Kent community. J Integrated Care. 2004;12:20–6.CrossRef
60.
go back to reference Liu D, Hinton L, Tran C, Hinton D, Barker J. Reexamining the relationships among dementia, stigma, and aging in immigrant Chinese and Vietnamese family caregivers. J Cross Cult Gerontol. 2008;23:283–99.CrossRef Liu D, Hinton L, Tran C, Hinton D, Barker J. Reexamining the relationships among dementia, stigma, and aging in immigrant Chinese and Vietnamese family caregivers. J Cross Cult Gerontol. 2008;23:283–99.CrossRef
62.
go back to reference Canevelli M, Zaccaria V, Ruocco C, et al. Migrants seeking help for cognitive disturbances: exploratory data from an Italian memory clinic. Neurol Sci. 2019;40:857–9.CrossRef Canevelli M, Zaccaria V, Ruocco C, et al. Migrants seeking help for cognitive disturbances: exploratory data from an Italian memory clinic. Neurol Sci. 2019;40:857–9.CrossRef
Metadata
Title
“It is always me against the Norwegian system.” barriers and facilitators in accessing and using dementia care by minority ethnic groups in Norway: a qualitative study
Authors
Elżbieta Anna Czapka
Mette Sagbakken
Publication date
01-12-2020
Publisher
BioMed Central
Published in
BMC Health Services Research / Issue 1/2020
Electronic ISSN: 1472-6963
DOI
https://doi.org/10.1186/s12913-020-05801-6

Other articles of this Issue 1/2020

BMC Health Services Research 1/2020 Go to the issue