January 26, 2022

Valerie Tsosie, Navajo, is a community educator with the New Mexico Chapter of the Alzheimer’s Association. She leads the So’Tsoh Foundation, an organization that aims to create pathways to better health by offering innovative solutions for Diné caregivers.

In partnership with the National Indian Council on Aging (NICOA), a long-standing organization focused on the needs of aging American Indians and Alaska Native elders, the Alzheimer’s Association recently offered a webinar, “Understanding Alzheimer’s and Dementia,” which examined the impact of Alzheimer’s and how it affects these Native communities. Led by Valerie, the program included information about stages of the disease, risk factors, current research and treatments, and information on how individuals and families affected by the disease can access Alzheimer’s Association resources. “Sharing the importance of an early diagnosis is one of the topics I always focus on,” Valerie says. “There are so many moving parts for families to think about.”

During Alzheimer’s education sessions with Native communities, Valerie says that Native families are open to learning more about the disease — and eager for resources. “These communities don’t have central offices, places to provide and house educational materials — and that includes Navajo, and we are one of the biggest in the nation.” When she started as a caregiver resource specialist with the Navajo Nation Division of Aging In 2018, Valerie was conducting caregiver education alongside five different agencies. That is when she realized that each individual Native community has their own very unique needs. “But at every training, people would ask the same question about signs in their mom, or grandpa: ‘Is this Alzheimer’s?’

Thankfully I received the Road Map for Indian Country training, bringing these learnings back to our people,” Valerie says. The Healthy Brain Initiative (HBI) Road Map for Indian Country is a guide for American Indian and Alaska Native leaders to learn about dementia and start discussions throughout their communities. In working with tribes other than Navajo, Valerie discovered that American Indian and Alaska Native communities are facing many of the same hurdles. “The training was so helpful in how to approach these sensitive topics. I continually catch new people being impacted by the disease who need our help. I am identifying new and existing caregivers all the time.”

Caring for Our Elders, Who Cared for Us

In American Indian and Alaska Native communities, elders are the spiritual leaders, and there is a stigma around placing elders in long-term care communities. As these elders develop dementia, they are being cared for by family, in multigenerational homes, especially due to the effects of the COVID pandemic. But another obstacle exists. “Young people are encouraged to get an education, but if they are away from reservation for four to eight years,” Valerie says, “what happens to their families when they leave?”

Data from the Alzheimer’s Association 2021 Alzheimer’s Disease Facts and Figures report indicates that while 92% of Native Americans feel it is important for health care providers to understand a person’s ethnic or racial background, fewer than half feel they have access to providers who are culturally competent. “Like many people in the later stages of Alzheimer’s, Native people can become combative about leaving home, but more particularly their land, and being taken to a new, strange place,” Valerie says. “Unfamiliar people, doctors especially, can be very frightening, especially doctors who don’t speak their language.”

In Native communities, Valerie says, “Caregivers don’t identify as caregivers. Caring for their own is a way of life for Native people: You have children, you care for them, and when your parents age, you care for them. People will say: ‘I am not a caregiver, but I need information.’ When asked what they do, they list all the activities and responsibilities of a caregiver. I tell them, unequivocally: ‘You’re a caregiver.’ Many people in our communities think you are only a caregiver if you are being paid, caring for someone outside your own family unit.”

In addition to the hurdles around care and the family unit, reservations don’t have traditional resources within their grasp. “Our people don’t have easy access to pharmacies, hospitals, or traditional grocery stores. Some people must travel 30 minutes on a dirt road to reach another paved road, where they must travel another 30 minutes, and so on,” Valerie shares. “Supporting these caregivers on the reservations by providing resources and educating communities will result in better care.”

Caregiver programs in American Indian and Alaska Native communities delivered by dedicated educators like Valerie importantly allow people to receive education and support from someone they trust, who looks like them, and who speaks their language. Death is taboo in Native cultures, yet Valerie knows that unanswered questions around Alzheimer’s only happen when people are passive. “I tell people: ‘If you have questions, keep asking.’ If you need help, we can find the answers. Be your own advocate, and be prepared when you go to the Indian Health Service (IHS), writing down the signs and changes you see in your loved one. Push for an accurate diagnosis.”

As part of the Navajo nation, Valerie says other surrounding tribes differ in their own traditions, and way of life, and educators have to come into the situation with understanding. “I’m here to help people because I know that the struggle is very real for our communities. Education I provide through the Alzheimer’s Association can help these communities face Alzheimer’s together, and help people realize that they are not alone.”

Native communities are still greatly in need of solutions to care and the cost of care for elders. With support groups, training and educational programs in place, Valerie wants the public to know the facts. “Caregivers are a critical part of approaching the aging population. Without them, much of the economy would not function. It’s my goal to continue to make a difference in Native communities as we face this disease as a nation.”

This blog post does not belong to IA². To view the original blog shared by the Alzheimer’s Association please click here.