Lighting the Fire of Advocacy in Indian Country

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When Carla Eben received the email about a dementia training from her supervisor, she read it curiously. Dementia? Even though Eben is head of Pyramid Lake’s Tribal Senior Services Program, she admits she knew almost nothing about the topic. Still, it piqued her interest since part of her job was to get more information for tribal care partners, and dementia was certainly something she needed to know more about.

The following week, Eben made the two-hour drive to the Winnemucca senior center. There, she joined 10 others around a U-shaped table listening to a woman from the Nevada Geriatric Education Center (NGEC) discuss Alzheimer’s disease and other forms of dementia. Although Eben was most interested in the subject of hoarding, one of the other topics presented that day by the NGEC, the instructor also discussed different types of dementia, their progressions, and some strategies for effective care partnering.

Eben was shocked. This was all foreign territory for her, and based on their questions everyone else in the room knew far more than she did. And as a member of the Pyramid Lake Paiute Tribe, it was clear Eben was the only one in the room representing Indian Country. So when the day was over and the presenter was packing up, Eben walked up to her slowly.

“Do you ever offer these dementia information sessions to Indian Country?” she asked.

“We always invite them, but they never seem to come,” the instructor responded while packing up her materials. Eben thought for a moment, then left silently.

“Those words rang in my head the whole two-hour drive home,” recalls Eben. “And I thought to myself ‘I’m going to change that.’ That really lit the fire in me.”

The next day Eben reached out to her tribal health clinic and asked about local dementia screenings or trainings. Nothing was scheduled, and dementia training wasn’t anything Indian Health Services offered.

Eben quickly learned that when it came to Indian country, the focus is on acute or immediate treatment. Dementia wasn’t on anyone’s radar. And while Native people might die from complications of Alzheimer’s disease or other forms of dementia, the official death notice would list the cause as diabetes or heart disease.

Yet inside, Carla was still fired up. So she asked a friend at the nearby University of Nevada, Reno (UNR) to help track down someone who could assist the Pyramid Lake Paiute tribe with dementia training. A week later, she got the name of Dr. Jennifer Carson from UNR’s Dementia Engagement, Education and Research (DEER) Program, who also happened to be lead facilitator for the state’s Dementia Friendly Nevada (Dementia Friendly Nevada) initiative. Eben emailed her.

The two met, Carson thrilled because the state’s dementia-friendly initiative hadn’t yet connected with any of Nevada’s tribes. Immediately, the two began working diligently to launch the Pesa Sooname Advisory Group, the Pyramid Lake Paiute Tribe’s dementia-friendly Community Action Group within Dementia Friendly Nevada. The group first conducted a comprehensive dementia community needs survey with support from UNR’s Sanford Center for Aging and then worked collaboratively to plan their first goals, including a statewide summit designed specifically to discuss dementia within a Native context.

While Dementia Friendly Nevada had already established four Community Action Groups— Washoe County, Elko, Winnemucca, and Southern Nevada Urban — they were looking to welcome more. After consulting with an approving Native elder, Eben and Carson decided to call their group Pesa Sooname, or “good think.” It seemed an appropriate way to respect elders while encouraging positive thinking and cognitive clarity. With that name, Pesa Sooname joined rural Pahrump – located an hour west of Las Vegas – as the two newest Dementia Friendly Nevada Community Action Groups.

Though the larger Dementia Friendly America (DFA) model targets sectors like hospitals, banks, retail stores and restaurants, many of these don’t exist on tribal lands. Instead, the Pesa Sooname Advisory Group began to focus on tribal – departments like the health center, tribal court, and tribal administration. Their goals were to educate elders, care partners, and tribal departments.

Not only did Eben, Carson, and Pesa Sooname receive funding from the Nevada Aging and Disability Services Division (ADSD), through a grant from the Administration for Community Living, to work toward these goals, but a Dementia Friendly America representative acknowledged “You’re the only tribe across America that applied for a dementia-friendly grant and got it.”

Besides the ADSD funding, Eben also used an existing grant from the Older Americans Act (also known as Title VI) to work with Carson to educate Pyramid Lake’s elders, tribal department staff, and care partners.

Largely because of Eben’s efforts, the Pesa Sooname Advisory Group at Pyramid Lake has gained national recognition as a leader in dementia training and advocacy in Indian country. It’s also 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.

Still, there was one more goal Eben wanted to reach in 2019. In August, the Pesa Sooname Advisory Group hosted 114 attendees at its inaugural Nevada Tribal Summit on Brain Health and Dementia, including representatives from 14 tribes.

Also at the summit was an old friend: the woman who first taught Eben about dementia, and who opened her eyes to the lack of representation from Native people in dementia education efforts. Eben thanked her as the two helped serve lunch to elder attendees.

“You were my inspiration,” Eben told her. “Had I not gone to your training, this would never have happened.”

Eben’s reputation as a dementia expert in tribal communities has become so strong that she was also asked to join a 2019 Older Americans Act panel in Minnesota focusing on dementia assistance in Indian country.

All of Eben’s hard work has also lit another spark. The National Indian Council on Aging (NICOA) has selected Sparks, Nevada for its 2020 American Indian Elders Conference where Eben and Carson will discuss their collaboration and provide a Dementia Friends information session to conference attendees.

Thanks to Eben, the fire of advocacy for elders living with dementia and their care partners burns bright at Pyramid Lake.

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