Skip to main content

Defining Dementia Care Standards When Cultural Safety is at Stake: The Case of Indigenous Canadians with Dementia

  • Chapter
  • First Online:
Living with Dementia

Part of the book series: Advances in Neuroethics ((AIN))

Abstract

Improving dementia knowledge and support among Canada’s Indigenous communities faces a host of intertwined ethical, epistemic, and logistical challenges. These challenges include distrust among Indigenous people of mainstream health care owing to traumatic colonial histories and ongoing social marginalization, as well as a lack of culturally appropriate prevention and diagnosis protocols, and divergent Indigenous and mainstream explanations of dementia and its meaning in human life. This chapter examines these challenges in light of debates that concern intercultural training in nursing and other health-care contexts, the creation of culturally appropriate care, and the value of cultural safety as a critical concept for decolonizing health-care access.

This is a preview of subscription content, log in via an institution to check access.

Access this chapter

eBook
USD 16.99
Price excludes VAT (USA)
  • Available as EPUB and PDF
  • Read on any device
  • Instant download
  • Own it forever
Softcover Book
USD 99.99
Price excludes VAT (USA)
  • Compact, lightweight edition
  • Dispatched in 3 to 5 business days
  • Free shipping worldwide - see info
Hardcover Book
USD 139.99
Price excludes VAT (USA)
  • Durable hardcover edition
  • Dispatched in 3 to 5 business days
  • Free shipping worldwide - see info

Tax calculation will be finalised at checkout

Purchases are for personal use only

Institutional subscriptions

Similar content being viewed by others

Notes

  1. 1.

    This chapter uses “Indigenous” and “Aboriginal” Canadian to refer to all persons of Indigenous ancestry in Canada. In Canada, further distinctions are drawn between First Nations, Inuit and Métis people. Not unproblematically, all of these terms imply the existence of homogenous ethnic or cultural identities which do not in fact exist: there are at least 52 major Indigenous cultural groups and over 50 different Indigenous languages in Canada. 50% of Indigenous Canadians live in urban centers, and the remaining 50% live on Reserves, of which there are 615 [1].

References

  1. Jacklin K. Understanding dementia in Indigenous communities in Canada. [PowerPoint slides] Alzheimer’s Disease International Conference. March 29, 2011. Toronto, Canada; 2011. https://slideread.com/slide/slide-1-qklzq2.

  2. Jacklin K, Walker J, Shawande M. The emergence of dementia as a health concern among First Nations populations in Alberta, Canada. Can J Public Health. 2013;104(1):e39–44. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6973818/.

  3. Walker J, Jacklin K. Current and projected dementia prevalence in First Nations populations in Canada. In: Hulko W, Wilson D, Balestrery J, editors. Indigenous peoples and dementia: new understandings of memory loss and memory care: University of British Columbia Press; 2019. p. 24–40.

    Google Scholar 

  4. Czyzweski K. Colonialism as a broader social determinant of health. International Indigenous Policy Journal. 2011;2(1):1–10. https://doi.org/10.18584/iipj.2011.2.1.5.

    Article  Google Scholar 

  5. Hulko W. From ‘not a big deal’ to ‘hellish’: experiences of older people with dementia. J Aging Stud. 2009;23(3):131–44. https://doi.org/10.1016/j.jaging.2007.11.002.

    Article  Google Scholar 

  6. MacLeod S. A story about Joe in the news media: decolonizing dementia discourse. In: Hulko W, Wilson D, Balestrery J, editors. Indigenous peoples and dementia: new understandings of memory loss and memory care: University of British Columbia Press; 2019. p. 61–79.

    Google Scholar 

  7. Pace JE, Jacklin K, Warry W, Pitawanakwat K. Perceptions of dementia prevention among Anishinaabe living on Manitoulin Island. In: Hulko W, Wilson D, Balestrery J, editors. Indigenous peoples and dementia: new understandings of memory loss and memory care: University of British Columbia Press; 2019. p. 86–106.

    Google Scholar 

  8. Henderson JN, Carson LD, King K. Indigenous vascular dementia: an Indigenous syndemic dementia model. In: Hulko W, Wilson D, Balestrery J, editors. Indigenous peoples and dementia: new understandings of memory loss and memory care: University of British Columbia Press; 2019. p. 41–60.

    Google Scholar 

  9. Lanting S, Crossley M, Morgan D, Cammer A. Aboriginal experiences of aging and dementia in a context of sociocultural change: qualitative analysis of key informant group interview with Aboriginal seniors. J Cross Cult Gerontol. 2011;26(1):103–17. https://doi.org/10.1007/s10823-010-9136-4.

  10. Bourassa C, Blind M, Jacklin K, Oleson E, Ross-Hopley K. The understanding from within project: perspectives from Indigenous caregivers. In: Hulko W, Wilson D, Balestrery J, editors. Indigenous peoples and dementia: new understandings of memory loss and memory care: University of British Columbia Press; 2019. p. 107–132.

    Google Scholar 

  11. Cammer AL. Negotiating culturally incongruent healthcare systems: the process of accessing Dementia care in Northern Saskatchewan. Master’s thesis, University of Saskatchewan; 2006. https://harvest.usask.ca/handle/10388/etd-12192006-160831.

  12. Finkelstein SA, Forbes DA, Richmond CA. Formal dementia care among First Nations in southwestern Ontario. Can J Aging. 2012;31(3):257–70.

    Article  Google Scholar 

  13. Ramsden I. Cultural safety. New Zealand Nurs J Kai Tiaki. 1990;83:18–9.

    CAS  Google Scholar 

  14. Ramsden I. Towards cultural safety. In: Wepa D, editor. Cultural safety in Aotearoa, New Zealand. Auckland: Pearson Educ New Zealand; 2005. p. 2–19.

    Google Scholar 

  15. Papps E, Ramsden I. Cultural safety in nursing: the New Zealand experience. Int J Qual Health Care. 1996;8(5):491–7.

    Article  CAS  Google Scholar 

  16. Curtis E, Rhys Jones R, Tipene-Leach D, Walker C, Loring B, Paine S-J, Reid P. Why cultural safety rather than cultural competency is required to achieve health equity: a literature review and recommended definition. Int J Equity Health. 2019;18:174. https://doi.org/10.1186/s12939-019-1082-3.

    Article  PubMed  PubMed Central  Google Scholar 

  17. Hulko W, Wilson D, Balestrery J. Introduction. In: Hulko W, Wilson D, Balestrery J, editors. Indigenous peoples and dementia: new understandings of memory loss and memory care: University of British Columbia Press; 2019. p. 3–18.

    Google Scholar 

  18. Browne AJ, Varcoe C. Critical cultural perspectives and health care involving Aboriginal peoples. Contemp Nurse. 2006;22(2):155–67.

    Google Scholar 

  19. National Aboriginal Health Organization. Cultural competency and safety: a guide for health administrators, providers, and educators. Ottawa: National Aboriginal Health Organization; 2008.

    Google Scholar 

  20. ANAC (Aboriginal Nurses Association of Canada). Cultural competence and cultural safety in nursing education: a framework for First Nations, Inuit and Métis nursing. Ottawa: ANAC; 2009.

    Google Scholar 

  21. Kumagai A, Lypson M. Beyond cultural competence: critical consciousness, social justice, and multicultural education. Acad Med. 2009;84(6):782–7.

    Article  Google Scholar 

  22. Brascoupé S, Waters C. Cultural safety: exploring the applicability of the concept of cultural safety to Aboriginal health and community wellness. Int J Aborig Health. 2009;5(2):6–41.

    Google Scholar 

  23. Kleinman A. Patients and healers in the context of culture: an exploration of the borderland between anthropology, medicine, and psychiatry. Berkeley: University of California Press; 1980.

    Book  Google Scholar 

  24. Alzheimer Society of Canada. Rising tide: the impact of dementia on Canadian society. 2010. https://alzheimer.ca/sites/default/files/files/national/advocacy/asc_rising_tide_full_report_e.pdf.

  25. Medline Plus. Dementia. 2020. https://medlineplus.gov/dementia.html. Page last updated 6 Feb 2020. Accessed 20 Feb 2020.

  26. WebMD. What is dementia? 2020. https://www.webmd.com/alzheimers/types-dementia#1. Published 9 Dec 2017. Accessed 20 Feb 2020.

  27. Reed P, Carson J, Gibb Z. Transcending the tragedy discourse of dementia: an ethical imperative for promoting selfhood, meaningful relationships, and well-being. AMA J Ethics. 2017;19(7):693–703. https://doi.org/10.1001/journalofethics.2017.19.7.msoc1-1707.

  28. Jacklin K, Warry W. Forgetting and forgotten: dementia in Aboriginal seniors. Anthropol Aging Quart. 2012;33(1):13–21.

    Google Scholar 

  29. Henderson JN, Henderson LC. Cultural construction of disease: a ‘supernormal’ construct of dementia in an American Indian tribe. J Cross Cult Gerontol. 2002;17(3):197–212.

    Article  Google Scholar 

  30. Shweder R, Much N, Mahapatra M, Park L. The big three of morality (autonomy, community, divinity) and the big three explanations of suffering. In: Brandt A, Rozin P, editors. Morality and health. New York: Routledge; 1997. p. 119–69.

    Google Scholar 

  31. Jacklin K. Understanding dementia in Indigenous populations: cultural safety and a path for health equity. Dementia Care 2019. Alzheimer Society Manitoba, March 4, 2019. Winnipeg, Canada; 2019. https://alzheimer.mb.ca/wp-content/uploads/2019/03/Mar4Plenary-Understanding-Dementia-in-Indigenous-Populations-Kristen-Jacklin.pdf.

  32. Jacklin K, Walker J. Cultural understandings of dementia in Indigenous peoples: a qualitative evidence synthesis. Can J Aging. 2019;10:1–15. https://doi.org/10.1017/s071498081900028x.

  33. Forbes D, Blake C, Thiessen E, Finkelstein S, Gibson M, Morgan DG, Markle-Reid M, Culum I. Dementia care knowledge sharing within a First Nations community. Can J Aging. 2013;32(4):360–74.

    Google Scholar 

  34. Buchignani N, Armstrong-Esther C. Informal care and older Native Canadians. Ageing Soc. 1999;19(1):3–32.

    Google Scholar 

  35. Korn L, Logsdon RG, Polissar NL, Gomez-Beloz A, Walters T, Ryser R. A randomized trial of a CAM therapy for stress reduction in American Indian and Alaskan Native family caregivers. Gerontologist. 2009;49(3):368–77.

    Google Scholar 

  36. United Nations. United Nations declaration on the rights of Indigenous peoples. 2007. https://www.un.org/development/desa/indigenouspeoples/declaration-on-the-rights-of-indigenous-peoples.html.

  37. Simpson A, Smith A, editors. Theorizing Native studies. Durham: Duke University Press; 2014.

    Google Scholar 

  38. Tuck E, Wayne Yang K. Decolonization is not a metaphor. Decoloniz Indige Educ Soc. 2012;1(1):1–40. https://jps.library.utoronto.ca/index.php/des/article/view/18630

    Google Scholar 

  39. Kovach M. Indigenous methodologies: characteristics, conversations, and contexts. Toronto: University of Toronto Press; 2009.

    Google Scholar 

  40. Tuhiwai Smith L. Decolonizing methodologies: research and Indigenous peoples. 2nd ed. London: Zed Books; 2012.

    Google Scholar 

  41. Wilson S. Research is ceremony: Indigenous research methods. Halifax: Fernwood; 2008.

    Google Scholar 

  42. Hulko W, Wilson D, Kent J. Focus(ing) on love and respect: translating elders’ teachings on aging and memory loss into learning tools for children and youth. In: Hulko W, Wilson D, Balestrery J, editors. Indigenous peoples and dementia: new understandings of memory loss and memory care: University of British Columbia Press; 2019. p. 215–32.

    Google Scholar 

  43. Hulko W, Stern L. Cultural safety, decision-making, and dementia: troubling nothing of autonomy and personhood. In: O’Connor D, Purves B, editors. Decision-making, personhood and dementia: exploring the interface. London: Jessica Kingsley; 2009. p. 70–87.

    Google Scholar 

  44. Hulko W, Camille E, Antifeau E, Arnouse M, Bachynski N, Taylor D. Views of First Nation elders on memory loss and memory care in later life. J Cross Cult Gerontol. 2010;25(4):317–42.

    Google Scholar 

  45. Lavallee L. Practical application of an indigenous research framework and two qualitative Indigenous research methods: sharing circles and Anishnaabe symbol-based reflection. Int J Qual Methods. 2009;8(1):21–40.

    Google Scholar 

  46. Rheault D’A. Anishinaabe Mono-Bimaadiziwin: the way of a good life. Peterborough: Debwewin Press; 1999.

    Google Scholar 

Download references

Author information

Authors and Affiliations

Authors

Corresponding author

Correspondence to Frances Bottenberg .

Editor information

Editors and Affiliations

Rights and permissions

Reprints and permissions

Copyright information

© 2021 Springer Nature Switzerland AG

About this chapter

Check for updates. Verify currency and authenticity via CrossMark

Cite this chapter

Bottenberg, F. (2021). Defining Dementia Care Standards When Cultural Safety is at Stake: The Case of Indigenous Canadians with Dementia. In: Dubljević, V., Bottenberg, F. (eds) Living with Dementia. Advances in Neuroethics. Springer, Cham. https://doi.org/10.1007/978-3-030-62073-8_9

Download citation

  • DOI: https://doi.org/10.1007/978-3-030-62073-8_9

  • Published:

  • Publisher Name: Springer, Cham

  • Print ISBN: 978-3-030-62072-1

  • Online ISBN: 978-3-030-62073-8

  • eBook Packages: MedicineMedicine (R0)

Publish with us

Policies and ethics