Understanding Dementia in Indigenous Communities in Canada

1. Understanding Dementia in Indigenous Communities in Canada Kristen Jacklin, Ph.D. Alzheimer’s Disease International Conference March 29th, 2011, Toronto, Canada Plenary Session: Research and Practice Related to Dementia in Indigenous Communities 

2. Conflict of Interest DisclosureKristen Jacklin, Ph.D. Has no real or apparent conflicts of interest to report.

3. Indigenous Peoples in Canada “Aboriginal Peoples” is a collective term used to refer to: Indian(First Nation), Métis, and Inuit peoples as defined in the Canadian Constitution The Aboriginal population is diverse; e.g., 615 First Nation Reserves; 52 major cultural groups; over 50 languages Over 50% of Aboriginal people live in urban centres

4. United Nations Declaration on the Rights of Indigenous Peoples • “Indigenous individuals have an equal right to the enjoyment of the highest attainable standard of physical and mental health. “ (United Nations Declaration on the Rights of Indigenous Peoples, Sept 13, 2007, Article 24.2) • “Indigenous Peoples have the right to their traditional medicines and to maintain their health practices, including the conservation of their vital medicinal plants, animals and minerals. Indigenous individuals also have the right to access, without any discrimination, to all social and health services”. United Nations Declaration on the Rights of Indigenous Peoples, 2007, Article 24.1)

5. History of Dementia in Aboriginal Peoples in Canada • Evidence points to historically low rates of ADRD but data is extremely limited • Reduced access to diagnosis and care • Lower life expectancy • Complex co-morbid illness • Previous research suggests rates of vascular dementia may be higher than other forms of dementia including Alzheimer’s disease (Hendrie et al. 1993)

6. Manitoulin Island First Nations Identified ADRD as a Health Concern in 2007

7. A “new” and “emerging” disease • ADRD argued to be a “new” disease for Aboriginal people – new in magnitude (Henderson and Henderson, 2002) • Aboriginal people are in the process of negotiating meaning of the illness in relation to their traditional understandings and biomedical understandings – they are formulating their explanatory model • Aboriginal people identified the increasing prevalence of ADRD in their communities in 2007 and communicated the need for research

8. Status Indians Dementia Trends: British Columbia Sources: Pathways to Health and Healing: 2nd Report on the Health and Well-being of Aboriginal People in British Columbia

9. Factors Increasing Vulnerability: Demographics Source: Statistics Canada (2005) Projection of the Aboriginal populations, Canada, provinces and territories 2001-2017 • Source: Indian and Northern Affairs Canada, 2001, Basic Departmental Data 2001, Catalogue no. R12-7/2000E

10. Factors Increasing Vulnerability: Health Status Source: Health Canada (2009) A Statistical Profile on the Health of First Nations in Canada: Self-rated Health and Selected Conditions, 2002-2005. 85% of seniors report having one or more chronic conditions; 66% have more than 2 chronic conditions

11. Factors Increasing Vulnerability: Disparities and Risk Post-Traumatic Stress Disorder Historical Trauma/ Intergenerational Trauma linked to residential school attendance Stress 38% FN on-reserve experienced racism in the previous year; Head Trauma Higher risk and rates of acquired brain injury Income average annual income for First Nations $33,416 (CAD) vs non-First Nations $43,486 (CAD) Education Lower levels of Education for First Nations 48% have less than high school graduation vs 30% for the non-First Nation population Source: Loppie Reading, C. and F. Wein (2009) Health Inequalities and Social Determinants of Aboriginal Peoples Health. The National Collaborating Centre for Aboriginal Health

12. The ADRD Experience for Aboriginal Peoples in Ontario

13. Community-based Participatory Research

14. Research Sites Moose Cree First Nation Manitoulin Island First Nations (7) Thunder Bay (urban) Six Nations Sudbury (urban) Ottawa (urban)

15. Ontario Study: ADRD in Aboriginal Peoples in OntarioKristen Jacklin (Northern Ontario School of Medicine) and Wayne Warry (McMaster University) Purpose • To work in partnership with communities to better understand Aboriginal peoples knowledge, perceptions and experience with dementia in order to create health care tools and resources that are reflective of Aboriginal peoples unique and diverse needs. Methods • Six research sites including 12 Aboriginal communities • Research sites capture cultural and geographic diversity of Aboriginal communities in Ontario • Qualitative • 130 research participants (interviews)

16. Indigenous Understandings of ‘Dementia’ • A natural part of aging • “special people” • Coming “full circle” towards infancy/spirit world • A “sacred time”

17. The Treatment Landscape • Access to diagnosis and treatment varies between urban, peri-urban, rural and remote communities. • Western/biomedical understandings of dementia are more prevalent in South Central Ontario • Community health care workers have little-to-no knowledge of signs, symptoms, treatment and care of dementia • Complexity of co-morbid illness places dementia as a lower priority for diagnosis and treatment for rural family physicians

18. Barriers to Care • Lack of training and education of local community health staff • Lack of cultural safety – especially in Nursing Homes • Transportation • Lack of community services for elderly (services are for the abled) • Historical Trauma – resemblance of nursing home and hospital environment to Residential Schools • Distrust of medical practitioners and western medications

19. Cultural Values and Strengths in Dementia Care Aboriginal language • Prevention • Elders roles, story-telling, songs, prayer, ceremony, balance, language and the “old” language • Treatment • Traditional medicines and ceremony, healing from past transgressions • Care • Family, humour, acceptance

20. Key Messages • Indigenous peoples in Canada suffer disproportionately from all forms of disease compared to mainstream Canadians; • ADRD rates in Indigenous peoples while historically low, are now on the rise resulting from the complex interplay of demographics, co-morbidities, and social and Indigenous determinants of health • ADRD is viewed as an emerging health issue for Indigenous peoples and ones that requires immediate attention. • Indigenous people in Canada are heterogeneous and hold diverse socio-political and cultural backgrounds which influence the way Alzheimer’s disease, dementias and other illnesses are experienced. • A critical look at the historical relationship between Indigenous people and Canada and the contemporary state of health care policy and funding suggests that Indigenous people in Canada require special and significant attention from dementia care researchers to ensure their unique needs can be met.

21. Research Funding

22. Contact Information Kristen Jacklin, Ph.D. Northern Ontario School of Medicine Laurentian University 935 Ramsey Lake Rd. Sudbury, ON Canada P3E 2C6 (705) 662 7277 kjacklin@nosm.ca