After Dementia Friendly Nevada (DFNV) launched in 2017, each of its six Community Action Groups surveyed local stakeholders to discover what they most needed to help support community members living with dementia. For many communities, needs overlapped and centered on education, peer support, and better medical resources. The Pyramid Lake Paiute Tribe, however, had a unique focus: prevention (i.e., risk reduction).
Naming its dementia-friendly Community Action Group “Pesa Sooname” for “good think” – a bow to the Native desire for harmony as well as cognitive clarity – co-facilitator Carla Eben says tribal communities have very different priorities than their non-Native counterparts. While non-Native cultures tend to corral elders into long-term care, Native families will traditionally sacrifice personal comfort for the sake of their elders and care for them at home, which makes risk reduction in Indian country even more critical.
“People will drop what they’re doing,” says Eben, who heads Pyramid Lake’s Numaga Senior Services Program. “Even their career.”
Eben herself is the perfect example.
Fresh out of high school, Eben was studying to be a med tech at the Oregon Institute of Technology when she called home to check in on her ill grandmother. But when she called, she found grandma was home alone.
“Somebody is supposed to be with you all the time, and nobody’s there,” cried Eben. “I’m coming home.”
“But you only have two more months until summer break!” came the reply.
Despite her grandmother’s objections, Eben returned to Pyramid Lake where she was desperately needed.
In American Indian communities, rates of dementia are skyrocketing and are projected to not just double or triple but multiply by five between 2014 and 2060. One reason dementia rates are among the highest in Indian country is the high incidence of diabetes, obesity, and heart disease. Nutritional deficiencies are one of many factors contribute to dementia.
And since younger tribal members like Eben will dutifully set aside their own lives to care for revered elders, prevention is particularly crucial.
In fact, during its needs assessment, the Pesa Sooname Advisory Group estimated there were 28 people in the tribal community living with dementia — half of them living alone.
“This was a shock to us,” admits Eben.
While tribal members wanted to be educated about dementia, Eben quickly discovered nothing was available from the local clinic nor from Indian Health Service. So she had to create dementia supports.
Her initial idea was to launch an elders circle as part of Pesa Sooname to educate personnel from fire, police, emergency medical, health services, social services, victim services, and beyond — the entire community.
But it was challenging.
Eben would schedule the monthly meetings on a calendar at the local clinic but only a handful of people would show, including “an elder or two.” She would see people in the clinic parking lot and they would tell her they were too busy. Even members of her own staff would skip the meetings.
Thankfully, the one constant has been Dr. Jennifer Carson, co-facilitator of the Pesa Sooname Advisory Group and of Dementia Friendly Nevada, as well as Director of the Dementia Engagement, Education and Research Program at the University of Nevada, Reno. Carson and Eben have spent countless hours together, navigating the maze of dementia and aging, and together they have created a road map for education and outreach within the Pyramid Lake tribal community.
In 2019 Eben and her Pesa Sooname Community Action Group, with support from Carson, held four different education sessions on topics spanning dementia education to care partnering approaches, and reached nearly 50 elders, care partners, social services employees, and clinic staff.
In August, Eben and Carson also launched a landmark event: Nevada’s first Tribal Summit on Brain Health and Dementia, which brought together 14 tribes and 114 participants from across Nevada.
While the outreach has been fragmented, Eben continues to push forward.
Carson remains impressed with Pesa Sooname’s vision, and Eben’s commitment and drive.
“They’re the only Community Action Group that’s working on the whole continuum, from risk reduction all the way through care and support,” she says.
The Pesa Sooname Advisory Group has also garnered national attention. It’s one of just four native communities spotlighted in the national Healthy Brain Initiative’s Road Map for Indian Country published by the Alzheimer’s Association and the Centers for Disease Control and Prevention.
Others nationwide have taken notice, too.
“Carla brought us all to attention through the recent collaboration [with Dementia Friendly Nevada] focusing on dementia and Alzheimer’s disease,” says Cynthia LaCounte, director of the Office for American Indians, Alaskan Natives and Native Hawaiian Programs for Health and Human Services’ Administration on Aging and Administration for Community Living. “This is a relatively new area forTitle VI programs, so Pyramid Lake has provided guidance to other tribes in this area… which is just how it should happen. The Tribes should lead the federal government to provide assistance to them.”
Although the Pesa Sooname Advisory Group no longer has the same funding stream, Eben insists it will continue pushing forward with its efforts to educate the community. Putting the CDC Road Map for Indian Country into action, they already have dementia ‘Talking Circles’ scheduled for January, March and May.
Looking further into the future, Eben continues with her grand vision: more care partner education, an annual health fair, more memory screenings, a local care navigator for families experiencing Alzheimer’s disease and other forms of dementia, a toolkit for tribal members to reference when a loved one is diagnosed with dementia, more elders accessing the coordinated care offerings from nearby Sanford Center on Aging, and an annual Tribal Summit on Brain Health and Dementia.
Despite the constant headwinds, Eben is determined to succeed. “I’m not giving up.”