Dementia and Alzheimer’s in Indian Country
By Wesley Wright
Dementia affects millions of lives across the United States, and Native people are at particular risk given their social background. According to the Alzheimer’s Association, until 1 in 3 Native American elders will develop Alzheimer’s disease or another form of dementia. Experts say there are a litany of factors that affect how and where native people receive care for dementia, and healthcare professionals need to be aware of them.
Like much of the American population, Native Americans have benefited from advances in medicine and health care over the past few decades. Ironically, the longer life they currently live makes them more vulnerable to physical and mental illnesses that develop in old age.
“Historically, native people died much earlier,” said Dr. Blythe Winchester, a member of the Eastern Band of Cherokee Indians in North Carolina. “They weren’t reaching an age where you would expect dementia or other neurodivergent issues, because they weren’t aging enough.”
Location can also be a factor, as access to medical care is more difficult in some parts of the country. “We know that many of us are located in rural districts,” Dr Winchester said. The Federal Department of Health and Human Services‘ Office of Minority Health estimates that 22% of Native Americans live on reservations or other tribal lands.
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Medical providers in rural areas “often have never received the proper training” to work with people seeking to manage dementia care, said Jolie Crowder, senior project manager for the International Association. for Indigenous Aging. A shortage of immediately available resources, she added, means providers who want to refer someone to outside care often have a shoddy referral network.
Although they have lived longer overall, many Aboriginal people worry about how doctors will treat them. A special report published in March 2021 by the Chicago-based Alzheimer’s Association found that less than half of Indigenous people surveyed believe they can find a “culturally competent” provider, and nearly a third of Indigenous caregivers have reported feeling suppliers or staff don’t listen to them because of their race.
“They thought they would be treated unfairly,” said Dr. Carl Hill, the association’s diversity, equity and inclusion manager. “Affordability is also a factor.”
United States Census Bureau data from 2018 showed the Indigenous poverty rate at 25.4%, the highest among racial minorities in the country.
“Institutional distrust is a huge factor,” said Jessica Wolf, owner and founder of Project Mosaic, a Denver-based consulting firm that helped the state of Colorado publicize its dementia plan last year. last. “They don’t trust strangers entering their homes.”
Wolf, who is of Ponca/Ojibwe/Santee ancestry, said that in collecting survey data, she and others have repeatedly found that even the thought of bringing in a nurse or a caretaker to help elderly family members is a no-start for many Aboriginal people.
Ka’imi Sinclair, professor of nursing at Washington State University – an unenrolled Western Cherokee – acknowledged that shoddy and unethical research in the past had stifled collecting information that would be useful to academics and physicians.
“We’re trying to collect more genetic data, which is difficult because of abuses from past research,” she said, noting that there is relatively little historical data on dementia and mental health issues. related among natives. “It’s been used to stereotype people and all sorts of other things.”
Many tribes hold a particularly vaunted place for elders, which can complicate matters if the elderly may need care beyond what they can get at home.
“There is a socio-cultural component,” Dr. Hill said. “They are really supportive and hold their elders in high regard, and sometimes that can mean they’re more likely to take care of their elders at home.”
Jolie Crowder said the stigma people might associate with dementia and its symptoms can prevent families from tackling it head-on.
“You don’t want your elders to be ashamed, because of the great respect for elders in your culture,” she said.
Medical problems common among native people can exacerbate dementia, Ka’imi Sinclair noted. “We know that diabetes and hypertension, when left unchecked, can lead to dementia,” she explained, adding that the federal government has become more willing in recent years to help fund the disease. research to detail the links between them.
Even the symptoms of dementia can be interpreted in different ways, depending on the given context. Where a provider might see symptoms associated with dementia and other neurocognitive issues, some Indigenous people might see a condition for rent.
“Some tribes actually believe that dementia is related to living in the spiritual realm,” Jessica Wolf said. “These connections are actually very powerful.”
Dr. Winchester said she was aware of many times when a provider who is unaware of Indigenous contexts may not respond positively or patiently to those with symptoms of dementia, or to the ways in which members of their family choose to react.
“We have these things in our culture that to others may seem far-fetched,” she said.
Crowder knows of tribes that have a tradition of never naming illnesses, which can greatly complicate responding to any diagnosis. A colleague of his, a doctor from Oklahoma, told him that it might even prevent them from talking about dementia.
“We wondered if in some cultures that’s why there’s no word for dementia and other related issues,” she said. “Indeed, not naming it may be a way to avoid claiming it, so to speak.”
The encroachment of other cultures on native life has caused some to fall back on the ways of past generations in some cases.
“I sometimes wonder if we had access to all of these methods, if we would even have such a serious problem,” with dementia and other related disorders, Crowder said.
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