New research by the Alzheimer Society shows Indigenous communities should brace for a whopping 273% increase in dementia cases by 2050, substantially higher than the potential 187% increase forecast for the overall population in Canada.
Dementia is a broad term for symptoms caused by progressive loss of brain function. It can impair judgment and memory, the ability to perform daily tasks, affect mood and behavior and lead to the loss of independence. Alzheimer’s is one of 50 types of dementia.
Advancing age is the most common factor as well as genetics and gender. But a combination of additional factors puts the Indigenous population at a higher risk, according to The Landmark Study Part 2: The Many Faces of Dementia in Canada released today.
“When examining social determinants of health and dementia, the stress resulting from factors such as racism, inadequate housing, poverty, residential schools and colonialism cannot be ignored,” reads the study, conducted by the Canadian Centre for Economic Analysis for the Alzheimer Society of Canada.
It estimates that in 2020 there were 10,800 people of Indigenous ancestry living with dementia in Canada. By 2050, that number is projected to be 40,300.
Beckie LaBillois and her family at Eel River Bar First Nation in New Brunswick cared for their mother Margaret who lived with dementia until her passing in 2013 at age 89. Margaret was an Air Force veteran, Order of Canada recipient, champion and educator of Mi’Kmaq language and culture and the first female chief of a First Nation in New Brunswick.
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“My mother was once an icon all over Canada, the United States and even overseas,” LaBillois said. “When dementia crept in, it stole their beloved matriarch and took the whole family to pitch in with her care. The first thing is, for all our First Nations people, is get educated (about dementia). As well, know your limits to being able to care for someone.”
Arranging for power of attorney to manage a loved one’s finances is as important as finding support and care services.
While the data projections look grim, LaBillois hopes it encourages others to plan for the challenges before they’re in the midst of them.
She says communities need to prepare for this too, and build dementia care into their health services, as it can’t all rest on families.
“They say that it takes a whole community in order to raise the children. But it’s not only the children,” LaBillois says, adding that means a collective responsibility for checking on those living with dementia, keeping a watchful eye on them and supporting their caregivers.
Prematurely losing elders’ wisdom and teachings will be devastating
Piita Irniq is Inuk from the Kivaliq region of Nunavut. He’s quoted in the study saying dementia has led to many elders being taken from their communities and moved south to receive care, which leaves a void in the role elders fill back home.
“In my particular period of time, we never had dementia among Inuit. We never had people with Alzheimer’s. Basically, this was because we died too young,” Irniq told researchers. “Today we have people, particularly in the last 10 years or so, who have dementia — Inuit from the Arctic and Inuit from Nunavut. Because these people cannot be looked after in their own communities — and because we have no facilities in our own communities.”
La Billois says communities need to plan ahead with dementia in mind, which is a challenge to people with financial and geographical barriers.
“Lack of access to supportive care services such as home care, personal support workers, and respite care can result in greater challenges for Indigenous care partners,” it says. “This is further exacerbated by the lack of long-term care options for Indigenous people within reserve communities.”
Dr. Danielle Alcock, of Chippewas of Rama First Nation, examined Indigenous female caregiver experiences of caring for a family member with dementia for her doctoral research in 2019. She found care was being provided “with minimal to no resources”, something the Alzheimer Society says must change, calling for more Indigenous-led dementia research and care resources.
The Native Women’s Association of Canada has put together a toolkit to help families and communities navigate the challenges of caring for those with dementia.
And Gitxsan communities of Kispiox and Sik-e-Dakh in B.C. developed a video with community members who were open to sharing their experience of caring for a family member living with dementia. It’s online to support others navigate these challenges.
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