Published on: May 20, 2018
by Women’s Brain Health Initiative:
Alzheimer’s disease and related dementias (ADRD) are a growing health concern for Indigenous populations in Canada. Rates of ADRD are on the rise in Indigenous communities, and are higher among Indigenous individuals than non- Indigenous individuals. Research in Alberta, Canada found that the prevalence of dementia among the First Nations population in that province in 2009 was 34% higher than the rate for non-First Nations individuals (7.5 cases per 1,000 people versus 5.6 per 1,000). Additionally, more recent research suggests that Indigenous people may be experiencing the onset of dementia an average of ten years earlier than non-Indigenous people.
Factors Increasing Risk of Dementia
There are three distinct groups of Indigenous people in Canada: First Nations, Métis, and Inuit. An alternate term for the same three groups is “Aboriginal peoples.” Canada’s Indigenous communities may be at an increased risk of developing ADRD due to higher rates of risk factors associated with dementia, such as diabetes, hypertension, cardiovascular disease, and obesity. Indigenous populations are also more likely to be affected by the social determinants of health, some of which are linked to increased risk of dementia, including lower income level and lower levels of education.
According to the World Health Organization’s website, “The social determinants of health are the conditions in which people are born, grow, live, work and age. These circumstances are shaped by the distribution of money, power and resources at global, national and local levels. The social determinants of health are mostly responsible for health inequities – the unfair and avoidable differences in health status seen within and between countries.”
Historical trauma also likely plays a role in the increased risk, through the stresses experienced as a result of prejudiced assimilation policies like the residential school system. In Canada, the Indian residential school system was a network of government-sponsored religious boarding schools for Indigenous children. The system was created to assimilate Indigenous children into Euro-Canadian culture. Attendance was mandatory for those who lived in one of the many Indigenous communities without a day school. This system forcefully and traumatically removed Indigenous children from their families, depriving them of their culture and languages, and exposing many of them to physical, emotional, and sexual abuse. An estimated 150,000 Indigenous children attended residential schools. The last residential school closed in 1996.
Indigenous Culture Affects Experiences of Dementia
Research has uncovered that Indigenous individuals have unique cultural perceptions of dementia that affect their experiences of the disease. Dr. Kristen Jacklin, a professor at the University of Minnesota, is a medical anthropologist specializing in Indigenous health research who has studied this subject extensively.
“Memory loss during aging may be considered natural and normal by Indigenous people,” explained Dr. Jacklin. “They don’t necessarily view it as a negative experience, but instead think of it as a part of the circle of life, like a second childhood as they prepare to return to the Creator.”
This worldview means there tends to be less stigma associated with dementia in Indigenous communities. Interestingly enough, there are no specific words for “dementia” in Indigenous languages in Canada. Instead, there are gentle or humorous adjectives to describe the symptoms or state of mind, such as being confused, forgetful, or mixed up.
Challenges with Dementia Diagnosis & Care in Indigenous Communities
“Since memory loss is not necessarily associated with illness, Indigenous people may not think to access health and social services in the early stages of dementia,” said Dr. Jacklin. Once they do decide to access medical care, Indigenous people face unique challenges with getting a diagnosis. For instance, some Indigenous people have difficulty accessing services due to their geographical location – they live in remote locations with limited or no health care services, and may have to travel long distances to access care. Where there are local health care providers, they may lack knowledge and training about dementia. Moreover, standard cognitive assessment tools, which are based on the English language and western education systems, are not appropriate for all cultures.
About CCNA Team 20
The Canadian Consortium for Neurodegeneration in Aging (CCNA) is a research hub focused on investigating neurodegenerative diseases that affect cognition in aging. The CCNA was launched in 2014 by the Canadian Institutes of Health Research (CIHR). CCNA teams are located across the country, each with their own independent research program. Team 20 has two focus areas: rural and Indigenous. Dr. Jacklin is the co-lead for this team.
Recent progress has been made by the CCNA Team 20 research group to address some of these challenges. For example, a series of culturally-safe fact sheets have been developed to assist with education. Also, a new culturally-appropriate tool, known as the Canadian Indigenous Cognitive Assessment (CICA), has been developed to screen for dementia among Indigenous people in Canada. The CICA is now in the process of being validated to ensure that the results from the tool are consistent with assessments by medical professionals.
Caregiving practices are heavily influenced by culture, including traditional beliefs and historical experiences. Research has repeatedly shown that the family is most often the primary or sole provider of care for Indigenous individuals living with dementia. While in some cases this happens out of necessity, more often it is because of cultural values that emphasize the interdependence of family, reciprocity, and respect for elders. In many Indigenous communities, elders with dementia are cared for at home for as long as possible, with the support of family and other community members. However, the rapidly growing number of individuals with dementia is presenting a challenge for such informal caregiving, as are changing family structures and urban migration.
When a loved one with dementia is cared for at home, family caregivers should not be required to assume this immense responsibility on their own – they need external support. Unfortunately, there are many service gaps and inequities when it comes to the health care provided to Canada’s Indigenous groups.
Dr. Jacklin and her colleagues conducted research about informal dementia caregiving among Indigenous communities in Ontario, Canada and reported that indigenous people often have poor access to mainstream services or may prefer to avoid them altogether because of institutional barriers such as deeply-embedded mistrust of the health care system. “Through that research, we concluded that although family caregiving models have many strengths, there remains a great need for culturally-safe programs, services and policies to support these Indigenous informal caregivers,” said Dr. Jacklin.
When family members can no longer care for their loved one at home, or when there is no family to provide care from the outset, the care options for an Indigenous person with dementia are incredibly limited. Most Indigenous communities do not have long-term care facilities so individuals with dementia must relocate, leaving family, friends, home, and their land behind. For Indigenous people, moving to a long-term care institution can be especially traumatic, triggering distressing memories of the residential school system. Likewise, sending elderly individuals with dementia out of the community can be particularly harrowing for those left behind, reminiscent of the “sixties scoop” when thousands of Indigenous children were taken away from their homes by child-welfare service workers and placed in foster care or were put up for adoption, in most cases without the consent of their families or bands. “Taking elders out of their communities is an injustice,” emphasized Dr. Jacklin. “We need to find ways to keep older Indigenous people in their communities.”
According to research out of Alberta and British Columbia, Canada, First Nations men, on average, have higher rates of dementia compared to women – yet another aspect about dementia that is unique to Indigenous individuals. This finding is the opposite of what is found in the general population, where females are much more likely to experience dementia than their male counterparts. More research is needed to learn why this reverse trend exists among First Nations communities. One hypothesis is that there may be differences between Indigenous men and women when it comes to health-seeking behaviours, with women being less likely to seek care and therefore being under-diagnosed.
When it comes to researching, diagnosing, and caring for individuals with dementia, it is clear that the Indigenous population needs – and deserves – a customized, culturally-grounded approach.
Dementia Similarities in Other Parts of the World
An academic review conducted by Shi et al., published in June 2015 in International Psychogeriatrics, investigated the prevalence of dementia in Indigenous populations worldwide. While the available research was limited, the researchers were able to analyze 15 studies from five countries: Canada, Australia, the U.S., Guam, and Brazil. The researchers found that study designs varied significantly, as did the findings – dementia rates were found to range from 0.5% to 20% in the Indigenous populations examined. The researchers nevertheless concluded that the “prevalence of dementia among Indigenous populations appears to be higher than it is for non-Indigenous populations” – a result consistent with previous findings.
A 2010 literature review prepared by Arkles et al., entitled “Ageing, Cognition and Dementia in Australian Aboriginal and Torres Strait Islander Peoples: A Life Cycle Approach,” found that dementia prevalence was almost five times higher among Indigenous Australians than in the general population. Consistent with research findings in Canada, this research uncovered that dementia is presenting at an earlier age in Australian Indigenous peoples (compared to non-Indigenous Australians) and that Australian Indigenous peoples also possess a unique cultural perspective of the disease, with many not viewing it as a medical condition.
Source: MIND OVER MATTER V6
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