Barbara Tinhorn, an Alzheimer’s Association volunteer of the Hualapai Tribe, has actively engaged her community in Alzheimer's education, recently starting a bimonthly support group on the reservation. She shares her story for getting involved in the cause.
The tribe of Hualapai — ‘people of the tall pines’ — is a small tribe of about 2,700 people. “There are about 1,000 people currently living on our reservation,” Alzheimer’s volunteer educator Barbara Tinhorn says. “For a small tribe, we have 1 million acres of land, and in the back are the tall pine trees, with the Colorado River just behind the reservation. We are remote, and need to travel to access many resources.”
The tribe recently celebrated Indian Week, a weeklong renewal and displaying of culture and education. “I am a retired teacher and am very involved in the community,” Barbara says. “I worked as a K-6 grade teacher in Peach Springs, watching 170 teachers come and go during my 30+ years as an educator.”
Personal Motivation Turns to Community Commitment
Barbara’s commitment to help provide resources and information about Alzheimer’s was born from personal loss. Her mother died from complications of Alzheimer’s, and her oldest foster sister also passed from the disease 6 months ago.” She wants others facing the disease to know there are resources available. “I am so glad that there are all of these Alzheimer’s Association programs, because when my mom passed, I had no resources. It was taboo for my tribe to talk about ‘the mind going.’ I knew nothing about how the disease really worked.
I wish I would have known more when I was going through this experience. I would always tell my mom that she was repeating herself; now I know to just go with the flow, and to let people with the disease repeat themselves without correcting. I have educated myself so that others in my community can see the benefits.”
Barbara sees the needs of the people of the tribe every day, particularly people who are without a support system. “We have a lot of single people on the reservation whose parents are simultaneously battling Alzheimer’s, and they have no one to help. I had the help of my older and younger sister. We were single parents working to support our families, so we rotated care for our mother week-to-week, which ensured a good balance so that we all got a respite from caregiving. But many single people do not have that support system.”
When the Alzheimer’s Association first came to the Hualapai reservation alongside the Indian Health Service (IHS), the presenter asked people what they most wanted to learn. “I had many questions, as did others,” Barbara said. “As soon as I started receiving education, I knew in my heart that I wanted to help people of all ages. I took the caregiving classes in just two days, then I took classes to be a community leader and Alzheimer’s educator.”
Education on the Reservation
Alzheimer’s is very foreign and new to people on the reservation, what Barbara calls “a whole new ball game."
Because Indian people use all their senses, Barbara says they need to see, hear and touch to remember. “As a teacher on the reservation for decades, I have learned that needs to be the approach,” she says. “At the end of sessions, I ask people what they learned to ensure that they are understanding what they need to know about this disease.”
It was thrilling for Barbara to have a man with Alzheimer’s at her first support group, who came with his daughter. Then a grandmother, mother and granddaughter participated, three generations interested in learning more about this disease and wanting to educate themselves. “This is why I do what I do,” she says. “I want more people to learn. Seeing generations of families being willing to learn together is all I can ask for.”
About: Barbara Tinhorn is half Hualapai and half Chinese. A lifelong learner, Barbara has her B.S. in Elementary Education and Master in Elementary Education from Northern Arizona University. While Barbara has only been working with the Association for four months, she loves the support that is available and the people she is working with.
Photo right: Barbara with her family at Grand Canyon West.
Native Americans and Alzheimer's