Manitoulin First Nations population in national study on aboriginal dementia

Dr. Kristen Jacklin

MANITOULIN—Last week, the Honourable Rona Ambrose, Federal Minister of Health, announced the launch of the Canadian Consortium on Neurodegeneration in Aging (CCNA), a national initiative aimed at tackling the growing onset of dementia and related illnesses and improving the lives of Canadians with these illnesses and their families and caregivers.

Led by Dr. Howard Chertkow, a cognitive neurologist and co-founder and director of the Jewish General Hospital/McGill Memory Clinic, the CCNA brings together 20 research teams and experts from across Canada to focus research on three themes: delaying the onset of dementia and related illnesses; preventing these illnesses from occurring; and improving the quality of life of Canadians living with these illnesses and their caregivers.

The CCNA is supported with funding of $31.5 million over five years from the Government of Canada through the Canadian Institutes of Health Research (CIHR) and a group of 13 partners from the public and private sectors, including the Alzheimer Society of Canada and Fonds de recherche du Québec-Santé. The CCNA researchers will also benefit from an additional $24 million investment by a subset of the partners in Ontario and Quebec.

Locally, Dr. Kristen Jacklin, associate professor at the Northern Ontario School of Medicine (NOSM) in the field of medical anthropology, is one of 47 principal investigators on the CCNA and the only principal investigator in Northern Ontario. Dr. Jacklin is co-leading a research team called “Team 20: Issues in dementia care for rural and indigenous populations” over the next five years which will spend its first two years of research working with Manitoulin First Nations health centres. Dr. Debra Morgan (University of Saskatchewan) is leading the rural research projects while Dr. Jacklin and Dr. Carrie Bourassa (First Nations University) are leading the indigenous research stream.

Dr. Jacklin’s team will be receiving $1 million in funding over five years to carry out this research. The research will be carried out at NOSM at Laurentian University and in Northern Ontario, including Manitoulin, and will focus on four areas: examining pathways to dementia care for indigenous people and identifying effective cultural approaches to care; the development of culturally appropriate cognitive assessment protocols for use in aboriginal communities; capacity building for age-related indigenous dementia research; regional epidemiological studies concerning dementia in rural and indigenous populations (incidence and prevalence, patterns of care, and multi-morbidities).

“Our team is truly excited about the launch of the CCNA,” Dr. Jacklin noted in a press release. “I think it is highly significant that indigenous issues will be a part of the consortium’s work and that there is a team headquartered here at NOSM and the Centre for Rural and Northern Health Research at Laurentian University leading this work.”

Over the past four years, Dr. Jacklin’s team has worked in partnership with rural First Nations communities and urban aboriginal organizations in Northern Ontario to begin exploring experiences with dementia. The CCNA will enable Dr. Jacklin and her team to foster cross-fertilization of ideas between research disciplines to support their research program and to develop innovative projects with other CCNA investigators.

“Initially, we will be working closely with the First Nations health centres on Manitoulin Island who were the first to bring the issue of dementia in their communities to our attention back in 2007,” explained Dr. Jacklin. “Our funding is structured in such a way that there will be opportunities to involve other communities and organizations as we move forward. Addressing dementia in indigenous populations is crucial. Ten years ago, dementia was not a significant illness in most aboriginal communities. Through our research, we now know that rates of dementia in aboriginal populations are higher than those in the non-indigenous population and communities are struggling to deal with this emerging health issue.”

Dr. Jacklin told The Expositor that she has been working with the Wikwemikong Health Centre, Mnaamodzawin Health Services and Noojmowin Teg Health Centre since 2009 on the aboriginal experience of dementia. She explained that she was first approached by Mnaamodzawin and Noojmowin Teg in 2007 during a roundtable discussion in Sudbury with the Alzheimer’s Society. The two Island health care organizations had noticed an increase in their First Nations patients with dementia and were looking for researchers to study this phenomenon, and hopefully provide some answers. Enter Dr. Jacklin.

“Ten to 20 years ago, there was nothing at all (dementia diagnoses), but now it’s becoming more and more common,” she said.

Over the past few years Dr. Jacklin, with approval from band councils, has been researching the First Nations experience of dementia; how patients are seeking care, their thoughts on the causes and how they are dealing with it.

This $1 million CCNA grant, that was likely secured thanks to a letter writing campaign from the Island Native health centres to the CCNA for continued funding, will allow the team to move forward to more “action oriented research,” the professor said. She said over the next five years, the team will search out effective indigenous approaches to dementia care with the integration of culture.

“It was really that roundtable in 2007 that drove this initiative on indigenous dementia,” Dr. Jacklin said, noting that there are very few Canadian studies that focus on First Nations patients. She pointed to an Alberta study that found that rates of dementia are 34 percent higher than among non-First Nations people. Studies in Australia on the aboriginal population there have shown that rates are five times higher than in the rest of the Australian population.

“The prevalence of dementia is rising faster in First Nations people,” she said. Factors that likely contribute to this are an aging population and the fact that aboriginal people are living longer than ever, higher rates of related illnesses such as diabetes as well as high blood pressure and heart disease.

“It’s not unexpected,” the professor said bluntly, “but we have more questions than answers.”

Dr. Jacklin said the team hopes to examine the administrative health data collected by the Island health centres to find correlations between overall health and dementia.

“Manitoulin is where we are going to start the work, but we have to work on a national level,” she said. “What we learn on Manitoulin in years one and two will be the building blocks for study in Saskatchewan” (where the professor’s partners in study are located).

She said the team would also be looking at the development of tools as there is not currently an effective tool to diagnose aboriginal people with dementia.

“The test assumes a mainstream understanding of the world,” she explained. In one test, patients are asked to list words that begin with the letter ‘F.’ For many elders, English is a second language and with so much translation and back translation going on, and with the Ojibwe language having no words beginning with the letter ‘F,’ this can be a difficult task. Another test asks people showing signs of dementia to identify animals, some of which are African. It would make more sense to have an animal test with creatures found in this part of the world, or a test in Ojibwe, Dr. Jacklin noted.

While the funding has not yet arrived, Dr. Jacklin said she hopes to the research team would meet before Christmas.

See future editions of this paper for more information on Dr. Jacklin’s ongoing research on First Nations dementia on Manitoulin.