The inequities facing Indigenous populations around the globe are well established. Health inequities stem not only from a mal-distribution of resources but also from systemic societal barriers such as racism, discrimination and structural violence. Researchers, the medical community and policy makers have known for decades that Indigenous people suffer disproportionally from chronic and infectious diseases. Yet, only modest and inconsistent efforts have been made to tackle these injustices.
Alzheimer’s disease and dementia represent a relatively new category of disease inequity for Indigenous populations. As life expectancy has improved for Indigenous peoples, so, too, has the risk of developing dementia. Available data suggests that rates of dementia began increasing around 2006, and that the incidence in the American Indian/Alaska Native populations is 14.6 percent higher than in the White population, plus prevalence in Canadian and Australian Indigenous populations are three to five times the national averages, with a younger age of onset of up to 10 years.
Like other chronic conditions in Indigenous populations, the increased risk for dementia is influenced by inequities rooted in the social determinants of health and the continuing impact of colonial policies and actions.
Understanding the Lived Experience of Dementia
My team’s research in the area of dementia in Indigenous populations was initiated more than 13 years ago in response to a request from Anishinaabe communities in Northern Ontario. Leadership in these communities recognized a sudden increase in older Indigenous adults developing signs of dementia and were dealing with a strain on an already overburdened health system. Discussions revealed a significant concern over the need for culturally appropriate approaches and training for dementia care for Indigenous older adults. In response, we developed a provincial study involving diverse Indigenous communities to investigate cultural understandings and perceptions of dementia.
Our team uses a community-based, participatory research approach to partner with communities on health research that is important to them. The majority of our research is qualitative and ethnographic. Our goal is to understand the lived experience of dementia from an Indigenous perspective—a necessary step to move toward the creation of culturally appropriate tools and resources that are grounded in Indigenous knowledge.
A two-eyed seeing approach places Indigenous knowledge on equal footing with Western knowledge.
Clinical approaches and health education programs and materials developed for non-Indigenous populations have been found to be inappropriate and ineffective. To ensure Indigenous knowledge is prioritized in our analysis we draw on a ‘two-eyed seeing’ framework.
Mi’kmaw Elder Albert Marshall explained that two-eyed seeing is a gift where we learn to see from one eye with the strengths of Indigenous knowledge and ways of knowing, and from the other eye with the strengths of Western knowledge and ways of knowing. An explicit two-eyed seeing approach addresses the power imbalance between the two knowledge systems, and places Indigenous knowledge on equal ground with Western knowledge.
To operationalize this method in our research we work closely with community advisory groups, community-based researchers and Indigenous knowledge keepers to highlight cultural and contextual knowledge that can inform the development of appropriate interventions.
Culture influences an individual’s understandings and behaviors around illness, including beliefs about illness causes, appropriate treatment, healthcare-seeking behaviors, decision-making models and appropriate models of care. Our research findings demonstrate an Indigenous-specific knowledge basis for dementia.
Indigenous participants from diverse geographies and cultures articulate a framework for understanding dementia that is grounded in the Indigenous understanding of the circle of life. Behaviors that sometime accompany dementia such as memory problems, seeing and hearing things that others cannot, speaking out of turn or saying things that might be considered inappropriate, and difficulty with everyday tasks are consistent with Indigenous beliefs that aging is a process of coming full circle back to childhood. In this belief system it is expected that some older adults will have these outcomes.
“It’s not looked at as a disease, you know. Some people go back that way, and this is how they are going back to the Creator,” said one research participant. “Keewayabinoocheeaway. That’s returning back to childhood.”
Coordinating Understandings Between Cultures
We found that biomedical discourse can be at odds with such Indigenous understandings; for example, what the medical community would characterize as hallucinations are described by Indigenous patients and their caregivers as visions with important teachings; terminology such as “second childhood” that is discouraged by mainstream organizations has literal meanings and is accepted in Indigenous cultures; talk of “memory loss” is less appropriate than saying “memories are buried”; and behaviors labeled “inappropriate” by medical and psychiatric fields are accepted on the “normal” spectrum by Indigenous cultures.
Such differences between Western biomedical culture and Indigenous culture—essentially differences in core value systems—can result in fundamental incongruences in dementia knowledge. Our two-eyed seeing approach resulted in the translation of these findings into culturally specific dementia educational materials and clinical tools for Indigenous populations in Canada.
‘Talk of “memory loss” is less appropriate than saying “memories are buried.” ’
Many Indigenous people caring for someone with dementia have little knowledge of dementia as an illness. They do not understand that it will progress, or how fast or what can be done to slow it down. The fact sheets use examples and experiences from other Indigenous people who have gone through a dementia diagnosis, have cared for someone with dementia, or have specialized knowledge (knowledge keepers) to provide information in a way that is consistent with their beliefs.
Also we encourage non-Indigenous providers to use the fact sheets to help understand how their Indigenous patients are experiencing the illness. The outcome is improved health literacy specific to dementia and improved cultural safety during clinical encounters. These resources privilege Indigenous dementia knowledge and add biomedical teachings when they are not in conflict with Indigenous understandings (www.I-CAARE.ca).
Knowing and respecting the cultural framework for an illness is necessary for addressing disparities. Equitable access to care requires that patients feel culturally safe in the health environment and in their healthcare encounters. Providing education and care that does not respect Indigenous knowledge represents a structural barrier and reduces access to and quality of care.
Conflicting knowledge systems also can result in racism, stereotyping, unconscious bias and discrimination. Recently, the Alzheimer’s Association released a report that found “fewer than half of Black and Native Americans feel confident they have access to providers who understand their ethnic or racial background and experiences.”
Memory Keepers Medical Discovery Team
In 2017, our team moved its research program to Memory Keepers Medical Discovery Team (MK-MDT) at the University of Minnesota Medical School, on the Duluth Campus. Memory Keepers is one of four medical discovery teams at the University of Minnesota Medical School funded by the State of Minnesota legislature to help achieve the state's goals of improving patient and population health, lowering costs and improving healthcare experiences.
We are funded by the National Institute of Health to expand our program of research on dementia to include Indigenous populations in Minnesota, Wisconsin and Ontario. Our research partnerships are with the Red Lake Tribal Nation, the Grand Portage Band of Lake Superior Chippewa, the Oneida Nation of Wisconsin and the Anishinaabe communities of Manitoulin Island in Ontario.
Our research program "Indigenous Cultural Understandings of Alzheimer’s and Related Dementias: Research and Exchange" [ICARE] will investigate cultural and contextual differences in the lived experience of dementia of Indigenous peoples living in distinct regions, affected by differing geographies, policies and economies in order to understand the adaptability and scalability of our findings.
We have incorporated a new focus on dementia experiences at different stages of the care trajectory and inquiry into Indigenous-specific conceptions of quality of life. The research will result in an ethnographic dataset that can be analyzed to inform culturally safe dementia care for Indigenous people impacted by Alzheimer’s disease and related dementias.
Kristen M Jacklin, PhD, is director and professor, Memory Keepers Medical Discovery Team–Health Equity, in the Department of Family Medicine and Biobehavioral Health at the University of Minnesota Medical School, Duluth Campus.