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Understanding of dementia in the United States is just beginning to blossom, yet within Native communities it’s almost nonexistent. So when Pyramid Lake Paiute tribal member Carla Eben stumbled upon a dementia training course in 2017, she realized virtually nobody in her community knew about dementia’s causes, its challenges, and what it means to have a dementia-inclusive community. So she took it upon herself to be a lightning rod, not just for her tribe but for tribal communities throughout Nevada.
Toward that end, Eben teamed up with Dr. Jennifer Carson, Director of the Dementia Engagement, Education, and Research Program at the University of Nevada, Reno, to launch a Community Action Group as part of Dementia Friendly Nevada. They called their group the Pesa Sooname Advisory Group; “pesa sooname” is Northern Paiute for “good think.”
Within two years, the Pesa Sooname Advisory Group became the host of a landmark event in the United States: the nation’s first Tribal Summit on Brain Health and Dementia, held at Pyramid Lake just an hour north of Reno. The daylong summit welcomed 114 participants from 14 tribes who heard presentations by national dementia experts, shared stories within wisdom circles, and ate a heart-healthy, brain-healthy lunch.
The summit joined Pesa Sooname’s dementia-friendly efforts with the rest of Nevada’s tribal communities, so during its planning stages, Carson asked Eben how to best honor tribal traditions. Eben described an elder abuse conference she’d attended in Idaho which they could use as a template. “She was really excited that we’d follow basic native protocol,” says Eben. “She kept telling me ‘This is your event – how do you want it?’”
Following Native tradition, the summit began with an opening prayer, traditional Northern Paiute song, and color guard to establish a mood of reverence for those attending and for “all our relations,” past, present, and future.
Central to the summit were explorations of dementia and brain health from expert speakers, most of whom were Native, followed by Q&A. “Wisdom circles” continued the discussion to ensure everyone in attendance had a chance to participate, an essential aspect of tribal culture.
Since one in three American Indians will experience some form of dementia, many questions revolved around the rising incidence of dementia, which is exacerbated by obesity, heart disease and diabetes — common risk factors within tribal communities.
To help address these questions was Dave Baldridge (Cherokee), who heads the International Association for Indigenous Aging. He was followed by consultant Mike Splaine, the two discussing their cutting-edge dementia guide Road Map for Indian Country which they helped create in collaboration with the Alzheimer’s Association and the Centers for Disease Control and Prevention (CDC). The road map is part of the CDC’s national Healthy Brain Initiative.
“There are very few tribes with programs or resources in place to help people with dementia and their caregivers, and that includes Indian Health Service,” said Baldridge. “That’s why we created the Road Map for Indian Country — to begin these conversations and encourage local planning.”
Baldridge cited estimates that from 2014-2060, the number of American Indians and Alaskan Natives 65 and older with dementia is expected to multiply by five times.
The afternoon session featured presentations by Dr. J. Neil Henderson (Oklahoma Choctaw), the executive director of Memory Keepers Medical Discovery Team on Health Disparities, and Dr. Peter Reed, director of the Sanford Center for Aging.
Henderson described the peril of walking into grocery stores loaded with nutritional nightmares that are recipes for poor brain health.
“Grocery stores aren’t looking out for your best interests,” warned Henderson. “When you walk into that grocery store, be afraid.”
Henderson said that common foods like sugar can be neurotoxic when consumed in excess. He also asked how ethical it was to promote sugary foods to children who don’t yet have the ability to think critically.
“When we see high rates of diabetes and know that it’s linked to dementia,” he pointed out, “we have to ask, ‘How much dementia is induced by poor diet?’ Diabetes increases the risk of dementia, so when we cut back on diabetes, we cut back on dementia.”
Reed discussed the importance of a holistic approach to dementia assessment and care.
“Interdisciplinary team approaches to geriatrics are critical for gaining the full picture of an elder’s needs,” said Reed. “The Sanford Center Geriatrics Specialty Clinic offers a comprehensive assessment that seeks to identify all relevant aspects of an elder’s life—including physical, social, cognitive and environmental factors—to build a care plan addressing the whole person. These services are also available via telemedicine to support elders living in rural and tribal communities.”
Throughout the day, tribal elders were consistently front and center.
“It’s the first training I’ve been to that really helped me,” said Linda Eben-Jones, Carla Eben’s aunt, who is Northern Paiute.
Jones has been a care partner most of her life — for her grandfather who lived to 104, her mother, and her husband who passed away two years ago — and says dementia is not commonly discussed among tribal elders, so there’s both a lack of information and, for some, deep denial.
“It’s vital these tribal elders and their communities are aware of it,” she says. “They don’t want to admit they have this problem.”
Other attendees appreciated the focus on elder wisdom.
“There’s such a wealth of information in the elder population that gets ignored,” says Barbara Payne from Dementia Friendly Pahrump, who drove 400 miles away to attend the summit with a fellow Community Action Group colleague. “And that’s a shame.”
Barbara also recalled the advice given about heart health. “Your heart is like the start of a free-flowing river,” says Barbara. “Veins and arteries that take blood away from and to the heart are like mini connected small streams that flow all through the body, including the brain, feeding it with oxygen and energy. You have to work to keep the streams flowing through your body from becoming clogged and the heart from being hurt.”
Like a bookend, the summit closed with a traditional prayer and song.
“It was such a powerful event,” recalls Carson. “It felt like a community really learning together.”
Baldridge also complimented Eben and the Pesa Sooname Advisory Group on the event.
“I consider Pyramid Lake a premier tribe in dementia education in the entire country.”