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

Journal of Cross-Cultural Gerontology

Volumn 25, Issue 4, 2010, Pages 317-342

  Hulko, Wendy ^a,b   Camille, Evelyn ^c   Antifeau, Elisabeth ^d   Arnouse, Mike ^a,e   Bachynski, Nicole ^a   Taylor, Denise ^d  

^a THOMPSON RIVERS UNIVERSITY   (Canada)

^b UNIVERSITY OF BRITISH COLUMBIA   (Canada)

^c Tk'emlúps Kamloops Indian Band   (Canada)

^d Interior Health Authority   (Canada)

^e Adams Lake Indian Band   (Canada)

Author keywords

Decolonization; Dementia; First Nation Elders; Indigenous; Memory loss; Participatory community based research; Secwepemc

Indexed keywords

AGED; AGING; AMERICAN INDIAN; ARTICLE; ATTITUDE TO HEALTH; CANADA; CULTURAL ANTHROPOLOGY; CULTURAL FACTOR; DEMENTIA; ETHNOLOGY; FEMALE; HEALTH CARE DELIVERY; HUMAN; HUMAN RELATION; INTERVIEW; MALE; MARRIAGE; MEMORY DISORDER; MIDDLE AGED; PARTICIPATORY RESEARCH; PHYSIOLOGY; PSYCHOLOGICAL ASPECT;

AGED; AGED, 80 AND OVER; AGING; CANADA; COMMUNITY-BASED PARTICIPATORY RESEARCH; CULTURAL CHARACTERISTICS; CULTURE; DELIVERY OF HEALTH CARE; DEMENTIA; FEMALE; HEALTH KNOWLEDGE, ATTITUDES, PRACTICE; HUMANS; INDIANS, NORTH AMERICAN; INTERGENERATIONAL RELATIONS; INTERVIEWS AS TOPIC; MALE; MARITAL STATUS; MEMORY DISORDERS; MIDDLE AGED;

EID: 78649526751     PISSN: 01693816     EISSN: None     Source Type: Journal    
DOI: 10.1007/s10823-010-9123-9     Document Type: Article

References (95)

1. Absolon, K., & Willett, C. (2005). Putting ourselves forward: Location in aboriginal research. In L. Brown & S. Strega (Eds.), Research as resistance: Critical, indigenous, and anti-oppressive approaches (pp. 97-126). Toronto: Canadian Scholars.
2. Adelson, N. (2005). The embodiment of inequity: health disparities in Aboriginal Canada. Canadian Journal of Public Health, 96(S2), S45-S61.
3. Administration on Aging (AoA). (2004). Alzheimer's disease: Native Americans. AoA Alzheimer's demonstration program report on Crow Eldercare project. Retrieved June 25, 2007, from http://www. aoa. gov/alz/media/pdf/crow_pdf. PDF.
4. Allan, K. (2001). Communication and consultation: Exploring ways for staff to involve people with dementia in developing services. Bristol: The Policy.
5. Alzheimer Society of B. C. Central Interior Region. (1998). Williams Lake multicultural community assessment project summary. Kamloops: Alzheimer Society of BC Central Interior.
6. Archibald, J. (2008). Indigenous storywork: Educating the heart, mind, body, and spirit. Vancouver: UBC.
7. Ashcroft, B., Griffiths, G., & Tiffin, H. (2000). Key concepts in post-colonial studies. London: Routledge.
8. Ball, J., & Janysk, P. (2008). Enacting research ethics in partnerships with Indigenous communities in Canada: "Do it in a good way". Journal of Empirical Research on Human Research Ethics, 3(2), 33-51.
9. Baskin, C. (2005). Storytelling circles: reflections of aboriginal protocols in research. Canadian Social Work Review, 22(2), 171-187.
10. Basting, A. D. (2009). Forget memory: Creating better lives for people with dementia. Baltimore: Johns Hopkins University Press.
11. BC Provincial Health Officer. (2009). Pathways to health and healing-2nd report on the health and well-being of Aboriginal people in British Columbia. Provincial Health Officer's Annual Report 2007. Victoria: Ministry of Healthy Living and Sport.
12. Brown, L., & Strega, S. (Eds.). (2005). Research as resistance: Critical, indigenous, and anti-oppressive approaches. Toronto: Canadian Scholars.
13. Browne, A. J., Smye, V. L., & Varcoe, C. (2005). The relevance of postcolonial theoretical perspectives to research in Aboriginal health. Canadian Journal of Nursing Research, 37(4), 16-37.
14. Cammer, A. L. (2006). Negotiating culturally incongruent healthcare systems: The process of accessing dementia care in Northern Saskatchewan. Unpublished Master's thesis, University of Saskatchewan, Saskatoon, Canada.
15. Canadian Institutes of Health Research (CIHR). (2008). CIHR guidelines for health research involving Aboriginal people. Ottawa: CIHR.
16. Canadian Study of Health and Aging (CSHA) Working Group. (1994). Canadian study of health and aging: study methods and prevalence of dementia. Canadian Medical Association Journal, 150(60), 899-913.
17. Charmaz, K. (2000). Grounded theory: Objectivist and constructivist methods. In N. K. Denzin & Y. S. Lincoln (Eds.), Handbook of qualitative research (2nd ed., pp. 509-535). Thousand Oaks: SAGE.
18. Charmaz, K. (2002). Qualitative interviewing and grounded theory analysis. In J. F. Gubrium & J. A. Holstein (Eds.), Handbook of interview research: Context and method (pp. 675-694). Thousand Oaks: SAGE.
19. Charmaz, K. (2006). Constructing grounded theory: A practical guide through qualitative analysis. Thousand Oaks: SAGE.
20. Cochran, P. A. L., Marshall, C. A., Garcia-Downing, C., Kendall, E., Cook, D., McCubbin, L., et al. (2008). Indigenous ways of knowing: implications for participatory research and community. American Journal of Public Health, 98(1), 22-27.
21. Craig, C. (2009). Exploring the self through photography: Activities for use in group work. London: Kingsley.
22. Dewing, J. (2002). From ritual to relationship: a person-centred approach to consent in qualitative research with older people who have a dementia. Dementia, 1(2), 157-171.
23. Diamond, J. (2006). A report on Alzheimer Disease and current research, revised edn. Toronto: Alzheimer Society of Canada.
24. Ferri, C. P., Prince, M., Brayne, C., Brodaty, H., Fratiglioni, L., Ganguli, M., et al. (2005). Global prevalence of dementia: a Delphi consensus study. Lancet, 366, 2112-2117.
25. First Nations Centre. (2005). Ownership, control, access and possession (OCAP) or self-determination applied to research: a critical analysis of contemporary First Nations research and some options for First Nations communities. Ottawa: National Aboriginal Health Organization.
26. First Nations Health Council. (2008). Regional profiles of First Nation communities. Vancouver: First Nations Health Council.
27. Fox, P. (1989). From senility to Alzheimer's disease: the rise of the Alzheimer's disease movement. The Milbank Quarterly, 67(1), 58-102.
28. Glaser, B. G., & Strauss, A. L. (1967). The discovery of grounded theory: Strategies for qualitative research. New York: Aldine.
29. Gracey, M., & King, M. (2009). Indigenous health part 1: determinants and disease patterns. The Lancet, 374, 65-75.
30. Griffin-Pierce, T., Silverberg, N., Connor, D., Jim, M., Peters, J., Kaszniak, A., et al. (2008). Challenges to the recognition and assessment of Alzheimer's disease in American Indians of the southwestern United States. Alzheimer's & Dementia, 4, 291-299.
31. Gubrium, J. (1986). Oldtimers and Alzheimer's: The descriptive organization of senility. Greenwich: JAI.
32. Hall, K. S., Hendrie, H. C., Brittain, H. M., Norton, J. A., Rodgers, D. D., Prince, C. S., et al. (1993). The development of a dementia screening interview in two distinct languages. International Journal of Methods in Psychiatric Research, 3, 1-28.
33. Hall, K. S., Gao, S., Emsley, C. L., Ogunniyi, A. O., Morgan, O., & Hendrie, H. C. (2000). Community screening interview for dementia (CSI'D'): performance in five disparate study sites. International Journal of Geriatric Psychiatry, 15, 521-531.
34. Harper, D. (2002). Talking about pictures: a case for photo elicitation. Visual Studies, 17(1), 13-26.
35. Henderson, J. N. (2002). The experience and interpretation of dementia: cross-cultural perspectives. Journal of Cross Cultural Gerontology, 17, 195-196.
36. Henderson, C. (2009). Battling a new epidemic: American Indian Elders and diabetes. Aging and the Indigenous people of North America conference. Norman, Oklahoma. June.
37. Henderson, J. N., & Henderson, L. C. (2002). Cultural construction of disease: a "supernormal" construct of dementia in an American Indian tribe. Journal of Cross Cultural Gerontology, 17, 197-212.
38. Henderson, J. N., & Traphagan, J. W. (2005). Cultural factors in dementia: perspectives from the anthropology of aging. Alzheimer's Disease & Associated Disorders, 9(4), 272-274.
39. Hendrie, H. C. (2006). Lessons learned from international comparative crosscultural studies on dementia. American Journal of Geriatric Psychiatry, 14(6), 480-488.
40. Hendrie, H. C., Hall, K. S., Pillay, N., Rodgers, D., Prince, C., Norton, J., et al. (1993). Alzheimer's disease is rare in Cree. International Psychogeriatrics, 5(1), 5-14.
41. Hendrix, L. A., & Swift Cloud-Lebeau, F. H. (2006). Working with American Indian families: Collaboration with families for the care of older American Indians with memory loss. In G. Yeo & D. Gallagher-Thompson (Eds.), Ethnicity and the dementias (2nd ed., pp. 147-162). New York: Routledge.
42. Hockey, J., & James, A. (1993). Growing up and growing old: Aging and dependency in the life course. London: Sage.
43. Hulko, W. (2009). From 'not a big deal' to 'hellish': experiences of older people with dementia. Journal of Aging Studies, 23(3), 131-144. doi: 10. 1016/j. jaging. 2007. 11. 002.
44. Hulko, W., & Stern, L. (2009). Cultural safety, decision-making, and dementia: Troubling notions of autonomy and personhood. In D. O'Connor & B. Purves (Eds.), Decision-making, personhood and dementia: Exploring the interface (pp. 70-87). London: Kingsley.
45. Indian Residential School Survivors Society. (n. d.). History. Retrieved June 25, 2010, from www. irsss. ca/history. html.
46. Jack, A. (Ed.). (2006). Behind closed doors: Stories from the Kamloops Indian Residential School. Penticton: Theytus Books.
47. Jacklin, K. (2009). Diversity within: deconstructing Aboriginal community health in Wikwemikong Unceded Indian Reserve. Social Science & Medicine, 68, 980-989.
48. Jacklin, K., & Kinoshameg, P. (2008). Developing a participatory Aboriginal health research project: "Only if it's going to mean something". Journal of Empirical Research in Human Research Ethics, 3(2), 53-68.
49. Jervis, L. L., & Manson, S. M. (2002). American Indians/Alaska Natives and dementia. Alzheimer Disease and Associated Disorders, 16(S2), S89-S95.
50. Jervis, L. L., & Manson, S. M. (2007). Cognitive impairment, psychiatric disorders, and problematic behaviours in a tribal nursing home. Journal of Aging and Health, 19(2), 260-274.
51. Jervis, L. L., Cullum, C. M., & Manson, S. M. (2006). American Indians, cognitive assessment and dementia. In G. Yeo & D. Gallagher-Thompson (Eds.), Ethnicity and the dementias (2nd ed., pp. 87-101). New York: Routledge.
52. John, R., Hagan Hennessy, C., Roy, L. C., & Salvini, M. L. (1996). Caring for cognitively impaired American Indian Elders: Difficult situations, few options. In G. Yeo & D. Gallagher-Thompson (Eds.), Ethnicity and the dementias (pp. 197-203). Washington: Taylor & Francis.
53. Jones, A., & Jenkins, K. (2008). Rethinking collaboration: Working the Indigene-colonizer hyphen. In N. K. Denzin, Y. S. Lincoln, & L. Tuhiwai Smith (Eds.), Handbook of critical and Indigenous methodologies (pp. 471-486). Thousand Oaks: Sage.
54. Kirby, S., Greaves, L., & Reid, C. (2006). Experience, research, social change: Methods beyond the mainstream (2nd ed.). Peterborough: Broadview.
55. Kovach, M. (2005). Emerging from the margins: Indigenous methodologies. In L. Brown & S. Strega (Eds.), Research as resistance: Critical, indigenous, and anti-oppressive approaches (pp. 19-36). Toronto: Canadian Scholars.
56. LoGiudice, D., Smith, K., Thomas, J., Lautenschlager, N. T., Almeida, O. P., Atkinson, D., et al. (2006). Kimberley indigenous cognitive assessment tool (KICA): development of a cognitive assessment tool for older Indigenous Australians. International Psychogeriatrics, 18(2), 269-280.
57. Loppie, C. (2007). Learning from the Grandmothers: incorporating Indigenous principles into qualitative research. Qualitative Health Research, 17(2), 276-284.
58. MacCourt, P. (2009). The dementia policy lens toolkit. Victoria, BC. Retrieved October 17, 2009, from http://www. seniorspolicylens. ca/Root/Materials/Adobe%20Acrobat%20Materials/DEMENTIA_POLICY_LENS_March_8_2009. pdf. March.
59. MacDonald, D. (2007). First Nations, residential schools, and the Americanization of the Holocaust: rewriting Indigenous history in the United States and Canada. Canadian Journal of Political Science, 40(4), 995-1015. doi: 10. 10170S0008423907071107.
60. Mehl-Madrona, L. (2009). What traditional Indigenous elders say about cross-cultural mental health training. EXPLORE, 5(1), 20-29. doi: 10. 1016/j. explore. 2008. 10. 003.
61. Miller, J. R. (1996). Shingwauk's vision: A history of Native residential schools. Toronto: University of Toronto Press.
62. Morgan, D. G., Crossley, M., Kirk, A., D'Arcy, C., Stewart, N., Biem, J., et al. (2009). Improving access to dementia care: development and evaluation of a rural and remote memory clinic. Aging & Mental Health, 13(1), 17-30.
63. National Aboriginal Health Organization (NAHO). (2008). Cultural competency and safety: A guide for health care administrators, providers and educators. Ottawa: National Aboriginal Health Organization.
64. Neihardt, J. G. (1972). Black Elk speaks: Being the life story of a holy man of the Ogalala Sioux with an introduction by Vine Deloria, Jr. Lincoln: University of Nebraska Press.
65. O'Connor, D., Phinney, A., & Hulko, W. (2010). Dementia at the intersections: a unique case study exploring social location. Journal of Aging Studies, 24(1), 30-39. doi: 10. 1016/j. jaging. 2008. 08. 001.
66. Parrack, S., & Joseph, G. M. (2007). The informal caregivers of aboriginal seniors: perspectives and issues. First Peoples Child and Family Review, 3(4), 106-113.
67. Pollitt, P. A. (1996). Dementia in old age: an anthropological perspective. Psychological Medicine, 26(5), 1061-1074.
68. Pollitt, P. A. (1997). The problem of dementia in Australian Aboriginal and Torres Strait Islander communities. International Journal of Geriatric Psychiatry, 12, 155-163.
69. Prince, M., Acosta, D., Chiu, H., Scazufca, M., & Varghese, M. (2003). Dementia diagnosis in developing countries: a cross cultural validation study. Lancet, 361, 909-917.
70. Prosser, J., & Loxley, A. (2008). Introducing visual methods. ESRC National Centre for Research Methods review paper. Leeds: National Centre for Research Methods.
71. Provincial Dementia Service Framework Working Group. (2007). BC Dementia service framework. Vancouver: Alzheimer Society of BC.
72. Reading, J. (2009). The crisis of chronic disease among Aboriginal peoples: A challenge for Public Health, Population Health and Social Policy. Victoria, BC: Centre for Aboriginal Health Research. Retrieved October 15, 2009, from http://www. cahr. uvic. ca/docs/ChronicDisease%20Final. pdf.
73. Reading, J., Kmetic, A, & Gideon, V. (2007). First Nations wholistic policy and planning model. AFN discussion paper for the World Health Organization Commission on Social Determinants of Health. Ottawa, ON: Assembly of First Nations. April.
74. Reisberg, B. (1984). Stages of cognitive decline. American Journal of Nursing, 84(2), 225-228.
75. Reisberg, B., Franssen, E. H., Hasan, S. M., Monteiro, I., Boksay, I., Souren, L. E. M., et al. (1999). Retrogenesis: clinical, physiologic, and pathologic mechanisms in brain aging, Alzheimer's and other dementing processes. European Archives of Psychiatry and Neuroscience, 249(9), S28-S36.
76. Rose, G. (2007). Visual methodologies: An introduction to the interpretation of visual materials (2nd ed.). London: Sage.
77. Royal Commission on Aboriginal Peoples. (1996). Report of the royal commission on aboriginal peoples. Ottawa: Canada Communications Group-Publishing.
78. Simpson, L. (2000). Stories, dreams and ceremonies: anishnabe ways of learning. Tribal College Journal, 11(4), 26-30.
79. Simpson, L. (2008). Oshkimaadiziig, the new people. In L. Simpson (Ed.), Lighting the eighth fire: The liberation, resurgence, and protection of Indigenous Nations (pp. 13-21). Winnipeg: Arbeiter Ring.
80. Smith, A. (1996). Cross-cultural research on Alzheimer's disease: a critical review. Transcultural psychiatric research review, 33, 247-276.
81. Smith, D., Varcoe, C., & Edwards, N. (2005). Turning around the intergenerational impact of residential schools on aboriginal people: implications for health policy and practice. Canadian Journal of Nursing Research, 37(4), 38-60.
82. Smith, K., LoGuidice, D., Dwyer, A., Thomas, J., Flicker, L., Lautenschlager, N. T., et al. (2007). 'Ngana minyarti? What is this?' Development of cognitive questions for the Kimberley Indigenous Cognitive Assessment. Australasian Journal on Aging, 26(3), 115-119.
83. Smylie, J., & Anderson, M. (2006). Understanding the health of Indigenous peoples in Canada: key methodological and conceptual challenges. Canadian Medical Association Journal, 175(6), 602-605.
84. St. Denis, V. (2004). Community-based participatory research: Aspects of the concept relevant for practice. In W. K. Carroll (Ed.), Critical strategies for social research (pp. 292-302). Toronto: Canadian Scholars.
85. Statistics Canada. (2003). 2001 Census analysis series. Aboriginal peoples of Canada: a demographic profile. Ottawa: Ministry of Industry.
86. Stiegelbauer, S. M. (1996). What is an Elder? What do Elders do? First Nations Elders as teachers in culture-based urban organizations. Canadian Journal of Native Studies XVI, 1, 37-66.
87. Strauss, A., & Corbin, J. (1998). Basics of qualitative research: Techniques and procedures for developing grounded theory (2nd ed.). Thousand Oaks: SAGE.
88. Sutherland, M. (2007). Alzheimer's disease and related dementias within aboriginal individuals: Roundtable forum. Toronto: Alzheimer Society of Ontario.
89. Taylor, D. (2007). Cultural safety and Interior Health. Okanagan Aboriginal Health Research Action Group Cultural Safety Symposium. December.
90. Tuhiwai Smith, L. (1999). Decolonizing methodologies: Research and Indigenous peoples. London: Zed Books.
91. Varcoe, C., Bottorff, J. L., Carey, J., Sullivan, D., & Williams, W. (2010). Wisdom and influence of Elders: possibilities for health promotion and decreasing tobacco exposure in First Nations communities. Canadian Journal of Public Health, 101(2), 154-158.
92. Warry, W. (2009). Ending denial: Understanding Aboriginal issues. Toronto: University of Toronto Press.
93. Wenger, C. (2002). Interviewing older people. In J. F. Gubrium & J. A. Holstein (Eds.), Handbook of interview research: Context and method (pp. 259-278). Thousand Oaks: Sage.
94. White, L. R. (1992). Towards a program of cross-cultural research on the epidemiology of Alzheimer's disease. Current Science, 63(8), 456-469.
95. Wilson, S. (2008). Research is ceremony: Indigenous research methods. Halifax: Fernwood.