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

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Decolonizing Dementia Care A grounded theory
of memory loss and memory care for Secwepemc
Nation EldersAlzheimers Disease International
ConferenceToronto, ON, March 27, 2011

• Dr. Wendy Hulko
• Associate Professor Chair, Social Work, TRU
• Qualified Health Researcher, CRPD, UBC

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Conflict of Interest Disclosure Wendy Hulko,
PhD, MSW

• Has no real or apparent
• conflicts of interest to report.

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(No Transcript)
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First Nations Perspectives on Dementia

• Researchers W. Hulko (PI), D. Taylor E.
  Antifeau
• Elder Advisors
• Councillor Evelyn Camille (TKemlúps 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

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

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Secwepemc Way of Life
Drawn by Elder Evelyn Camille Dec 3/07 during
FNPD research team meeting
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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.

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Causes of Memory Loss

• Ways to Prevent Memory Loss
• Minds always going
• Talking
• Healthy Diet
• Sleep
• Chemical-free
• Bingo (but not gambling)
• Exercising (mind, body spirit)

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

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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
  (Alzheimers), brings heartache, no word in
  language, did not exist pre-contact still
  uncommon, most Elders spoke of this.

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Your dementia
Being Secwepemc
Supporting one another
Growing older
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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 wholl say,
  oh, she cant remember anything, youll have to
  tell her again, but, you know, we have to teach
  the younger generation about this and this is
  good, what youre doing now, as long as itll
  reach the proper people (sharing 2, Oct 08).

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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 McDonalds 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 youre First Nation
  youre free, my mind is free. My mind speaks
  whatever comes into it.
• (sharing 3, Jul 9 09)

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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 your
  dementia the Elders are directing us to bring
  back traditional lifestyle
• 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 whulko_at_tru.ca 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.