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Views of First Nation Elders on Memory Loss and Memory Care in Later Life

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Abstract

Little is known about Indigenous communities and dementia and Elders have not been involved as advisors or participants in most research to date. This exploratory research sought to address this gap through a constructivist grounded theory project on the views of First Nation Elders on memory loss and memory care in later life, conducted in collaboration with decision-makers from the local Health Authority and Elders from three First Nation communities in British Columbia, Canada. Elders served as advisors to this research and research agreements were negotiated and signed with each community. Data collection occurred through a series of sharing circles and interviews with a total of 21 Elders, four of whom were experiencing memory loss, and two community members. Four themes arose through the constant comparative data analysis process: Being Secwepemc, growing older, losing memory, and supporting one another. These themes indicate that memory loss and memory care in First Nation communities has changed over the past century, including the causes attributed to memory loss in later life and community responses to those affected. Elders hold differing views about memory loss, including the traditional—‘going through the full circle’ [of life]—and the shémá [white] way—‘your dementia’, with the latter being much more common. This research indicates the importance of protecting and reviving traditional knowledge and ways of life in order to prevent ‘your dementia’ and avoid the adoption of health care practices that may be culturally unsafe for First Nation Elders.

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Notes

  1. Our understanding at the start of this research was that not all older Indigenous people are ‘Elders’ and that one can be an ‘Elder’ before reaching a particular age (see Parrack and Joseph 2007; Stiegelbauer 1996), as the designation of ‘Elder’ is based on one’s role in the community, e.g., as a teacher, guardian of knowledge, spiritual leader. However, this distinction may no longer hold in every Nation or community, with ‘Elder’ being used generically not only in the field of aging, i.e., church Elder, LBGT Elders, but also in the communities with whom we worked. ‘Elder’ did not always reference knowledge of culture and traditions and/or role within the community. At the same time, the Elder Advisors were recommended for their strong knowledge of Secwepemc culture and ways of life: both speak the Secwepemtsin language, perform ceremonies, share stories to teach the young, and work primarily for the good of their people.

  2. As the Principal of Kahui Tautoko Consulting, Mara Andrews was contracted by the First Nations Health Council of British Columbia to conduct background research into several conditions affecting First Nations people, dementia being one of them.

  3. We use ‘themes’, rather than the grounded theory term ‘categories’, to make this accessible to a wider audience.

  4. We submitted an application to Interior Health (IH) research ethics 18 months into the project only after receiving requests from two of the communities to also speak with their members living in residential care facilities; we received approval too late to undertake these interviews for this research.

  5. The two community members who were research participants were (1) a daughter who participated (mainly observed) in an interview with two Elders with memory loss and (2) a 48 year old woman who participated in the third sharing circle and was not related to anyone experiencing memory loss. Several family members were present as observers during two interviews with one Elder and a German ethno-musicologist with a longstanding relationship to the community observed the third sharing circle.

  6. The Elders did not like the words ‘colonization’ and ‘decolonization’, which some saw as interchangeable, as neither word references ‘what came before [colonization]’; they advised us to say ‘bringing back traditional lifestyle’ instead of ‘decolonizing’.

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Author information

Authors and Affiliations

  1. Social Work & Human Service, Thompson Rivers University, 900 McGill Road, Kamloops, BC, V2C 5N3, Canada

    Wendy Hulko & Nicole Bachynski

  2. Centre for Research on Personhood in Dementia, University of British Columbia, Vancouver, BC, Canada

    Wendy Hulko

  3. Tk’emlúps [Kamloops] Indian Band, Kamloops, BC, Canada

    Evelyn Camille

  4. Community Integrated Health Services, Planning and Improvement, Interior Health Authority, Nelson, BC, V2C 5N3, Canada

    Elisabeth Antifeau

  5. Adams Lake Indian Band, Chase, BC, Canada

    Mike Arnouse

  6. Thompson Rivers University, Kamloops, BC, Canada

    Mike Arnouse

  7. Aboriginal Health, Interior Health Authority, Kamloops, BC, Canada

    Denise Taylor

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  1. Wendy Hulko
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  2. Evelyn Camille
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  3. Elisabeth Antifeau
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  6. Denise Taylor
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Correspondence to Wendy Hulko.

Additional information

The terms ‘Indigenous’ and ‘First Nations’ are used somewhat interchangeably in this article. ‘Aboriginal’ appears when it is the language used by specific authors or studies and is a term created by the Canadian government to refer to those whose ancestry can be traced to the original inhabitants of this land: First Nations, Inuit and Métis people (see Royal Commission on Aboriginal Peoples (RCAP) 1996; Warry 2009). Although ‘Aboriginal’ regularly appears in government documents and academic literature, ‘First Nations’ and ‘Indigenous’ are preferred by those working towards decolonization. ‘Indigenous’ is meant to identify similarities between Nations and to assert collective rights of Indigenous people across the globe or throughout the cosmos (see Wilson 2008). To acknowledge the diversity of Indigenous people, specific Nations or communities should be named whenever possible, i.e., Secwepemc Nation in the case of this research. Shuswap is the territory (land) on which the Secwepemc Nation (people) reside; the territory references the past and the ancestors and the nation indicates the present and those living in this world; further, one walks on territory and is welcomed by the nation (Gerald Carter & Norma Peters, Medicine Wheel Centre, personal communication, April 12, 2010).

Appendices

Appendix A

Questions for sharing circles 1 and 2 with Elders

  1. 1.

    In your experience, have you come across memory loss in your community?

    • Tell us about a time that the Elders talked about memory and forgetting.

    • What do you think leads to memory loss?

    • Does age make a difference?

  2. 2.

    What happens in your community when a member has memory loss?

    • How do family members respond?

    • What effect does memory loss have on relationships?

    • How do community members help a person with memory loss?

  3. 3.

    How would an Elder seek help here in [name of community]?

    • Who do community members look to for support?

    • What kind of help is needed?

  4. 4.

    In what ways does memory loss affect First Nations (Aboriginal) people?

    • Spiritually, physically, emotionally, cognitively

    • What are the stories told by Elders about memory and forgetting?

    • How does this affect your way of life and well-being?

Questions for sharing circle 3 with Elders

  1. 1.

    In discussions with Elders from other communities, we’ve heard two opposing views about memory loss in later life. ‘Going through the full circle’, which is more of a traditional view, and ‘your dementia’ or ‘brains became sick’ which seems to be more of a colonized view. Tell us about these differing views.

  2. 2.

    Some Elders have spoken to us about decolonization—through educating and reviving their communities. What does decolonizing memory loss and memory care mean? How can we do this? Tell us about decolonization.

  3. 3.

    If Elders in this community needed help looking after themselves because of aging or memory loss, what would happen? Who would care for them? How would the community respond?

Appendix B

Questions for individual interviews with Elders with memory loss

  1. 1.

    Tell us a bit about yourself living in your community.

    • Share a bit about your life with us.

    • How do you spend each day?

  2. 2.

    What do you think it might be like to have trouble with your memory? How about for this woman (point to picture)? And this man (point to picture)?

    • Has memory loss and memory care affected you personally? Your community? How so?

    • Do you have any stories to share about remembering and forgetting? Tell us one.

    • Have you ever heard about the older ones forgetting or losing their memory? What have you heard?

  3. 3.

    Why do you think memory loss and confusion happens to the older ones? Why might she (point to picture) be having trouble remembering things? And him (point to picture)?

    • Diet, residential school, brain disease, aging, trauma

    • Living under conditions of stress, completing the circle, being inundated with health concerns, coping with residential school deficiencies

  4. 4.

    Do you think experiences of memory loss and memory care might be different for First Nations people than for White people? Tell us what you think about that.

    • Has memory loss changed your life in any way?

    • How has this affected your relationships and well-being (community, friends, family, culture)?

  5. 5.

    Who helps the older ones when they have memory loss?

    • If you needed help with memory loss, who would help you out?

    • How does anyone know if an older one needs help?

    • The older ones who get help, how do you think they feel about that?

  6. 6.

    Is there anything else you can tell us that might help us understand how Native people see memory loss and memory care for the older ones?

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Hulko, W., Camille, E., Antifeau, E. et al. Views of First Nation Elders on Memory Loss and Memory Care in Later Life. J Cross Cult Gerontol 25, 317–342 (2010). https://doi.org/10.1007/s10823-010-9123-9

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