Decolonizing Dementia Care: A grounded theory of memory loss and memory care for Secwepemc Nation Elders

Alzheimer’s Disease International Conference Toronto, ON, March 27, 2011 Dr. Wendy Hulko Associate Professor & Chair, Social Work, TRU Qualified Health Researcher, CRPD, UBC

Conflict of Interest Disclosure

Wendy Hulko, PhD, MSW

Has no real or apparent conflicts of interest to report.

Lillooet Salmon Arm Nelson Castlegar Grand Forks Trail Invermere

First Nations’ Perspectives on Dementia

• Researchers: W. Hulko (PI), D. Taylor & E. Antifeau • Elder Advisors: – Councillor Evelyn Camille (TK’emlúps First Nation) & Mike Arnouse (Adams Lake Indian Band & TRU) • Funding & Timeframe: – ~$62,000 (IH, MSFHR, TRU) from 09/07 – 12/09 • Methodology & Methods: – Constructivist grounded theory within an Indigenous/ decolonizing framework, including adherence to OCAP – Sharing circles & interviews with 21 First Nation (FN) Elders & 2 family members from 3 FN communities – Constant comparative data analysis & emergent fit

Decolonization – Scholars

• Calls for us to “engage with imperialism and colonialism at multiple levels”, including research (Smith, 1999, p. 20). • Requires seeing oneself as a colonized being and involves “the restoration of culture practices, thinking, beliefs and values...[and] the birth and use of new ideas, thinking, technology and lifestyles” (Yellow Bird, 2008, p. 284).

• Is a collaborative process, as “in order for the Eighth Fire to be lit, settler society must also choose to change their ways, to decolonize their relationships with the land and Indigenous Nations, and to join with [Indigenous people] in building a sustainable future based upon mutual recognition, justice and respect” (Simpson, 2008, p. 14). Simpson, L. (2008). Oshkimaadiziig, the New People. In Simpson, L. (Ed.), Lighting the eighth fire: The liberation, resurgence, and protection of Indigenous Nations (pp. 13-21). Winnipeg, MB: Arbeiter Ring Publishing. Smith, L.T. (1999). Decolonizing methodologies: Research and indigenous peoples. Yellow Bird, M. (2008). Postscript. Terms of endearment: A brief dictionary for decolonizing Social Work with Indigenous peoples. In Gray, M., Coates, J. & Yellow Bird, M. (Eds.), London: Zed Books.

Indigenous Social Work around the world: Towards culturally relevant education and practice (p. 275-291). Surrey, England: Ashgate.

Secwepemc Way of Life

Drawn by Elder Evelyn Camille Dec 3/07 during FNPD research team meeting

Findings – Themes/Categories • Being Secwepemc • Growing Older • Losing Memory

– Causes of memory loss – Ways to prevent memory loss – Views on memory loss

• Supporting One Another

Hulko, W., Camille, E., Antifeau, E., Arnouse, M., Bachynski, N., & Taylor, D. (2010). Views of First Nation Elders on memory loss and memory care. Journal of Cross Cultural Gerontology, 25 , 317-342. Online First, 30 June 2010. DOI: 10.1007/s10823-010-9123-9.

Causes of Memory Loss

• Diet (changes) • Chemicals • Alcohol & drugs • Accidents • Trauma (including residential schools) • Loss of oral culture • Medications • Pollution

Ways to Prevent Memory Loss

• ‘Minds always going’ • Talking • Healthy Diet • Sleep • Chemical-free • Bingo (but not gambling) • Exercising (mind, body & spirit)

Views on Memory Loss • ‘Going through the full circle [of life]’

– Traditional view, normal part of the life cycle, closest word in Secwepemtsin language means ‘the lights went out’, few Elders spoke of &/or held this view.

• ‘

Your

dementia’

– Shémá [white] way, terrible disease (Alzheimer’s), brings heartache, no word in language, did not exist pre-contact & still uncommon, most Elders spoke of this.

Being Secwepemc

Your

dementia Growing older

Training & A Special Status

“Everybody have, a bit of training, what is, you know, how to recognize illness, how – what to say to the person, you have to know – I want to learn, I want to learn” (sharing 1, Sep 29 08).

“The family shows more respect for them, to me they would be special and given a special status, not, you know, yes I know some kids who’ll say, ‘oh, she can’t remember anything, you’ll have to tell her again’, but, you know, we have to teach the younger generation – about this – and this is good, what you’re doing now, as long as it’ll reach the proper people” (sharing 2, Oct 08).

Freeing the Mind to Think Outside

“So – and – and our minds is being taught eh. They decolonize our mind the way they want it. Not how we want it. So our – us – our Elders is – satellite dishes. Eh in the spirit world [Laughter].” “To decolonize is like what they done to us at the beginning. When they put us on reserves. Ok. They took away our way of life and in turn tried to teach us by ordering food from McDonald’s and quit plantin’ corn and potatoes. The government done all this.” “When you go to school, they form your mind. They trick you. They train your mind not to think outside the box. They train your mind that this is the right way. This is the only way. You lose – that sense like when you’re First Nation – you’re free, my mind is free. My mind speaks whatever comes into it.” (sharing 3, Jul 9 09)

Decolonization – Elders

• Did not like the words ‘decolonization’ & colonization’ (interchangeable) & advised us to refer to ‘bringing back traditional lifestyle’.

• Saw this process as one of educating the community, including the younger generation; reviving communities; &, understanding cultural differences, especially with regard to those who change due to aging &/or memory loss.

• Thought viewing memory loss as ‘going through the full circle [of life]’ rather than as ‘ your dementia’ was part of decolonizing the mind.

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Concluding Comments

• The impact of colonization is such that ‘the lights went out’ has been replaced by ‘ & the Elders are directing us to ‘bring back traditional lifestyle’; your dementia’ • While the causes suggested by the Elders may differ, their prevention methods are similar to those promoted by Alzheimer Societies; and, • This study suggests the need to question our truths, view dementia in a more holistic/complex way and honour counter-hegemonic views.

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KUKSTEMC! Thank you!

• To Evelyn Camille, Gerald Carter, Mike Arnouse and all the other Elders who participated. • To Elisabeth Antifeau and Denise Taylor, my co investigators from Interior Health, and all our research assistants, especially Nicole Bachynski E-mail Wendy at [email protected]

for more details on the FNPD project or to learn about our new Culturally Safe Dementia Care (CSDC) project (01/11-12/12) funded by the Michael Smith Foundation for Health Research.