When health staff use aboriginal language to speak to First Nations persons with dementia, the family caregiver generally notices a difference in the patient’s demeanor. The response is often described as “calming.”
It is an important phenomenon, says Dr. Kristen Jacklin, an associate professor and medical anthropologist in the Human Sciences Division at the Northern Ontario School of Medicine. Currently, she is studying First Nations peoples’ knowledge, attitudes and perceptions of Alzheimer’s disease and related dementias (ADRD) among 12 aboriginal communities in six sites in Ontario. The goal is to improve sensitivity of ADRD care for aboriginal patients and families and to advance the development of appropriate intervention and prevention tools.
“We found that aboriginal people definitely explain the experiences or symptoms of dementia differently than Western culture would,” Jacklin says. “There is certainly a more naturalized view of the illness.”
Western medicine tends to describe forgetfulness, wandering and other ADRD-associated behaviors as “delirium.” But many aboriginal communities view them in terms of one’s journey around the medicine wheel, with the elder returning to a child-like state. “They view it as the doorway that connects the physical world and the spiritual world,” says Jacklin.
Because Indian country and mainstream society often differ in their belief systems about aging, it is vital that American Indian and First Nations peoples affected by ADRD receive culturally appropriate diagnosis and care. Even subtle changes can make a difference, says Robin Shawanoo, a coordinator for the Alzheimer Society’s First Nations First Link (First Link) Program at the Oneida Nation of the Thames. First Link offers counseling, education and training, awareness and advocacy to First Nations people in London and Middlesex, Ontario who are affected by ADRD.
First Link’s approach to treatment incorporates elements of culture, tradition and spirituality. Visiting patients at their homes, Shawanoo begins assessments by socializing to understand a family’s concerns and beliefs surrounding ADRD. Rather than treating the disease, he treats the person and family unit holistically with the medicine wheel as his guide.
“I don’t look at it in terms of a disease,” Shawanoo says. “I look at their needs. If they are in the early stages of dementia, I look at what kinds of things I can do to make their environment safer and ways to delay the progression of the disease if possible. You have to try and turn away from the Westernized medical view and look at what the individual needs holistically—mentally, physically, spiritually and emotionally, and let’s not worry about the label.”
A key way of encouraging cognitive activity is to engage elders in ceremony and traditional activities, he says. “Even people who speak two languages, it decreases their potential for dementia for some reason. Anything that keeps the brain active we promote, and we try to keep things culturally sensitive—learning our songs, learning our language, learning our crafts.”
(To this end, Jacklin even suggests that elders be encouraged to eat traditional foods as a way to emphasize the connection to the land and enhance the mind’s ability to remember: “There’s this memory function involved, because with traditional foods there’s ceremony involved.”)
Communicating with people in their indigenous language can bridge potential gaps in cognition. “The indigenous words for dementia are specific enough actually to distinguish between mild, moderate and severe symptoms,” says Jacklin. “They are more descriptive of what the person is experiencing rather than the disease process. This could have implications in conversations between patient and caregivers and physicians, providers, et cetera.”
Shawanoo also utilizes culturally appropriate methods to assess First Nations persons. For instance, he will ask them to contrast a quilt and a feather—as opposed to velvet and a church, as is done in the Montreal Cognitive Assessment (MoCA) word-recognition test. Shawanoo hopes his modified screening test for ADRD will help doctors communicate with First Nations patients in a more “culturally competent” way.
“In working with Dr. Ziad Nasreddine [MoCA author], one of the biggest things we’ve changed is the standard-test displays pictures of three African or Asian animals—a rhino, camel and lion,” Shawanoo says. “We took those out and replaced them with a turtle, bear and a wolf—the three clans of the Oneida First Nations.”