Poetry offers space for tribal elders with dementia to express themselves

By Holly J. McDede, CNN

(CNN) — Victoria Smith places a comforting hand on the back of her 88-year-old father as they create poetry in a small room on the Fond du Lac Band of Lake Superior Chippewa reservation near Duluth, Minnesota. Smith savors these sessions with Les Northrup Sr., who sits quietly with his arms crossed with other soon-to-be poets.

Her dad is her hero and first love growing up, a man who would sneak her out of the house at 4 a.m. to get breakfast. Now, living with dementia, Northrup can be forgetful, get frustrated and repeat himself.

This session at the end of July begins with a prod from facilitator Jeanne Warttman, who reads a line from a poem aloud: “I see their names like birds perched on branches of my family tree.”

It jogs loose a memory for Northrup, who waits his turn before jumping in.

“When I was 12 years old, I got up on a tree and stood up on a branch, and it didn’t hold my weight. I broke my arm,” Northrup says in a steady voice. “I never did that again. That family tree was broken.”

Allie Tibbetts, another facilitator, scribbles in a notebook. She’ll use the words spoken at the session — organized for those with dementia and their family members — to string into a poem.

“Storytelling, with the Ojibwe people, is how we’ve always done things,” said Tibbetts, a children’s book author, poet and member of the Fond du Lac Band. “That’s how we’ve always taught our children, that’s how we’ve connected to the world around us.”

Drawing from Indigenous traditions to stay engaged

Organized by researchers with the Memory Keepers Medical Discovery Team at the University of Minnesota, the poetry sessions offer a way for those with dementia and the people caring for them to express themselves and stay socially engaged.

Part therapy session, part history project, the exercise draws from Indigenous traditions to cultivate memories and bring out reflections about the Ojibwe language, practices and community. It promotes brain health while recognizing that elders are keepers of songs, stories and rituals, and that their wisdom can benefit others.

The idea came from Antonio Paniagua Guzman, a senior research associate with the Memory Keepers Medical Discovery Team, who launched the sessions in June with $183,000 from the Alzheimer’s Association. Paniagua Guzman and other researchers have reviewed literature showing that poetry interventions open a path to self-expression for those living with dementia and their caregivers, giving them agency as well as opportunities to connect with others.

American Indian and Alaska Native elders face significant systemic barriers to accessing health and social support and have a lower life expectancy than all other populations in the United States. Older American Indians also have higher rates of cognitive impairment than other US groups, according to research funded by the National Institutes of Health. More than half of older American Indian adults had cognitive impairment, including 10% with dementia, researchers found.

Seeing how powerful poetry could be

Paniagua Guzman, the poetry project’s principal investigator, started thinking about ways poetry could help those living with dementia after visiting his grandmother in Mexico City in 2019. As she neared the end of her life, his grandmother had been reciting a popular poem from memory, a caregiver told him.

“I was like, ‘Wow. How powerful poetry can be,’” Paniagua Guzman said. “When you are living with that condition, it can be the only thing that is still with you.”

A few years later, he started working with the Memory Keepers Discovery Team in Minnesota. He set out to learn everything he could about the Fond du Lac Band, one of the six bands of the Minnesota Chippewa Tribe.

Tribal members educated Paniagua Guzman with reading materials, movies and documentaries. Over time, he was invited to join powwows. He learned about their tradition of oral storytelling and reverence for elders, and he realized how poetry could be a powerful tool to support those with dementia and their families. Researchers have noted that the focus of community, culture and family structures within Indigenous populations can protect against some early-life stresses and social isolation, a risk factor for neurodegenerative disease.

The Alzheimer’s Poetry Project has been using poetry to improve the quality of life for people with dementia for more than two decades. During two days of training, Alzheimer’s Poetry Project founder Gary Glazner visited the Memory Keepers Medical Discovery Team’s office in Duluth and showed the team his technique for creating poetry, which includes employing call-and-response and asking open-ended questions.

Glazner said the act of creating poetry together helps caregivers understand their loved ones in a new way.

“It’s not just the devastation of getting a diagnosis of dementia. You can also say, ‘Well, there’s these other things we can do to help facilitate the person’s personality, and give them a chance to be funny,” Glazner said. “So much of the isolation and stigma of having the disease is also harmful, so if you can change any of that, it can hopefully help people.”

Through the poetry sessions on the Fond du Lac Reservation, Paniagua Guzman said participants feel heard.

“Sometimes elders with dementia get isolated. This is their space, this is their moment, they are free to say whatever they feel, whatever they want,” Paniagua Guzman said. “And whatever they say is important.”

Connecting with a trusted tribal member

The University of Minnesota is rebuilding trust after a long history of systemic harm perpetuated against Indigenous people. A 2023 report, produced by tribal and university researchers, found the university financially benefited from “genocide” and “ethnic cleansing” of Indigenous peoples since its inception.

A university spokesperson, Andria Waclawski, wrote in a statement that ongoing conversations and the TRUTH Project, a Native American-led research movement, “guide how we can solidify lasting relationships with Tribes and Indigenous people with respect, open communication and action.”

“Our engagement with Tribal leaders and community members has resulted in many hopeful, initial steps to acknowledge the painful realities of the University’s past and to form mutually beneficial partnerships built on research, policies, and practices that respect Tribal sovereignty, languages, and traditions,” Waclawski wrote.

Rather than extracting knowledge from Indigenous communities, the Memory Keepers Medical Discovery Team works in collaboration with community members. The poetry project needs the Fond du Lac Band’s support to succeed.

Roger Smith, who served on the Tribal Council at Fond du Lac for more than a decade, is a key partner for the poetry intervention. Smith’s cousin, Rick, already was working with the Memory Keepers team as elder in residence and approached him about becoming the poetry project’s community-based researcher.

Smith had taken care of older adults since he was 8 years old and remembers learning how to give his grandfather an insulin shot. Now — as the husband of Victoria Smith — he’s seeing his father-in-law, Northrup, cope with memory loss.

But Smith is not a poet. His background is in law enforcement. As the first official officer of the Fond du Lac police force, he learned how to build trust and relationships with people during their worst moments.

“I’ve seen some awful things. Death of young people, suicides. Just bad things. I was having nightmares, and the wife was noticing,” Smith said. “I looked at what Rick had sent me, and I said, ‘Well, we’ll see what it’s like.’”

He liked what he saw, particularly the Memory Keepers’ commitment to addressing health disparities in Indigenous communities. So he agreed to recruit participants and interview them before the program starts and after it ends. The goal is to create a poetry program that Indigenous communities can turn to as a model and replicate.

Smith, who observed the late July session, already sees the impact. He said he believes that elders spending time together and sharing memories helps them feel engaged.

“It’s not going to cure dementia. But for that short period of time, it brings joy to them,” Smith said. “You can see it in their faces when they think back, and their eyes light up.”

‘Look at this hand — it’s just so ancient’

At the session, the co-facilitator, Warttman, reads another poetic prompt: “I want to kiss them back to life, to squeeze each sleeping hand.” It strikes a chord with Margaret Roth, 71, who taught American Indian studies courses at Fond du Lac Tribal and Community College and what was then Vermilion Community College. She is now living with dementia.

“I wish I could get my mom back because she was so wise. She would say, ‘Look at this hand — it’s just so ancient. And she would say, ‘Look at yours, brand new skin,’” Roth recalls, rubbing back tears. “I’d like to hold her hand again.”

Hearing Roth’s comment resurrected a memory for Roger Smith, watching his own mother’s hands when he was little, and holding her hand at the end of her life.

He said he’s not surprised the sessions resonate with the elders and their families.

“This hit home,” he said. “It brought them back to their loved ones.”

At the end of the session, Tibbetts reads the group poem.

My Great-grandma’s hands

How dark they were

Very wrinkly

All the things she taught

Wishing I had more time to learn

Look at this hand

So ancient

I’d like to hold her hand again

Everyone marvels at the poem crafted from their collective thoughts. A few grab tissues, their eyes filling with tears.

Now that the sessions are complete, the team plans to compile the poetry into a book for families to see what they made together.

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