By: Mary Ann OMeara, MPH, Breana Dorame, International Association for Indigenous Aging; Mike Splaine, Splaine Consulting
Alzheimer’s disease and related dementias affect American Indian and Alaskan Native people at a high rate. According to the Healthy Brain Initiative’s Roadmap for Indian Country, 1 in 9 people over 65 in America experience Alzheimer’s or related dementia. This percentage increases for American Indians over 65 to 1 in 3 elders. Communities are beginning to recognize that elders with Alzheimer’s or dementia may need support beyond that of the family. For many Native families, it is commonplace for their elders to remain in the home and for immediate family to care for their loved ones. For many, caregiving comes with many stressors. As a result, tribal authorities are analyzing their capabilities to provide culturally competent Alzheimer’s or related dementia care in their communities or residential settings. American Indian and Alaska Native communities need long-term services and support, and steps can be taken to continue to protect elders and caregivers.
Warning Signs of Alzheimer’s and Dementia
Identifying warning signs early in elders and loved ones is crucial to finding the best care possible while preserving their long-term health. In an informative interview with A.L.Z. Magazine, Violet Blake discovered the challenges facing Alzheimer’s firsthand when her mother became ill. Violet and her family moved to the Oneida reservation to care for her mother, Shirley. She explained that some tribes don’t have a word for dementia and had never heard of the disease when she became her mother’s caregiver. This, among others, is a situation that is seen time and time again. For caregivers like Lorraine Wildcat, caring for her mother with Alzheimer’s is hard. After her mother’s diagnosis a few years ago, and with her father’s health failing, Lorraine quit her job and she and her husband moved in with her parents in their rural tribal community to provide care. By then, her mother’s memory issues were so advanced that she couldn’t remember how to use a phone. For many it is critical to identify early signs of memory changes that could be Alzheimer’s or dementia.
Some prominent warning signs are:
- Memory loss that disrupts daily life.
- Challenges making plans or solving problems.
- Difficulty completing familiar tasks.
- Confusion with times and places.
- Decreased or poor judgments.
- Misplacing things or not remembering where things are.
For a more comprehensive list, be sure to check out the 10 Warning Signs of Alzheimer’s. , as well as IA2’s 10 Signs of Thinking or Memory Changes that Might Be Dementia, specifically for American Indian and Alaska Native Communities. Should someone be displaying signs of dementia, reach out to a medical care provider as soon as possible. An early diagnosis can make all the difference.
More Resources are Needed in Tribal Communities
American Indian and Alaska Native (AI/AN) people ages 65 and older are more predisposed to dementia, including Alzheimer’s, than other racial and ethnic groups. This increases the likelihood of family members becoming caregivers in tribal communities. It is not surprising then that one in three AI/AN adults is a caregiver, more than other racial and ethnic groups. Therefore, it is more important than ever to establish long-term services and care to help elders experiencing Alzheimer’s and dementia and provide support for their caregivers.
“After funding, workforce issues are the common bottom line problem faced when tribes and tribal organizations are planning for long-term services,” says Elaina Seep, C.E.O. and Project Lead at Aniwahya Consulting Services. “Everywhere, especially after COVID, we see issues of enough workers, trained workers, and retaining workers to do this vital work.”
The life expectancy for members of AI/AN communities has increased rapidly over the decades, increasing the number of elders in the community. It is a blessing to have a more significant amount of tribal elders, but the resources to provide for them must also grow.
Today, of the 574 Federally Recognized tribes, 35 tribes are estimated to be operating nursing homes, and as many as another 50 have assisted living communities. In addition, Title VI programs deliver support, and some tribes participate in state Medicaid waiver programs that support persons with disabilities in the community.
Solutions for AI/AN Communities
The surest ways to help reduce the risk of Alzheimer’s and other dementias are maintaining a good diet, regular physical activity, lifelong stress management, spiritual wellness, among other things. However, even if all preventative measures are taken, there is still a risk. Although dementia-related conditionss are increasing in American Indian and Alaska Native communities, resources to help are rising to match the demand.
Recognizing workforce as core issue, the Administration for Community Living has awarded a five-year, $6 million grant to establish a center called The National Direct Care Workforce Capacity Building Center. This center will strengthen and expand the direct care workforce across the country.
This center will serve as a hub that provides resources, training, and tools to assist state systems and service providers. It will also support developing and coordinating policies and programs that contribute to a stable direct-care workforce.
In addition, the center will facilitate shared peer-to-peer advice and support collaboration between state systems, including Medicaid, and other aging, disability, and workforce agencies. Finally, it will open communications between aging and disability service providers and stakeholders, which creates an opportunity for tribes to engage them directly.
Long-Term Services and Support Resources
There are many resources to help elders who experience Alzheimer’s and dementia-related illnesses. In addition, resources to provide culturally appropriate care and assistance to community elders are available. Early identification and prevention are the first steps to helping those you love.
- The Healthy Brain Initiative’s Road Map for Indian Country is a public health guide focusing on dementia and brain health for American Indians and Alaskan Native communities.
- The Alzheimers Association has a program enabling you to enter your zip code and connect you with local programs to help.
- The National Indian Council on Aging (NICOA) empowers American Indian and Alaskan Native elders and provides free resources to help native communities in need. Be sure to check out the National Indian Council on Aging (NICOA) LTSS Compass to find tribal resources and more.
- The United Nursing Homes of Tribal Excellence, U.N.I.T.E., provides resources to increase the quality of life for AI/AN elders and provides culturally relevant education for caregivers.
- The Center for Medicaid and Medicare Services released an informational bulletin that helps the AI/AN community sign up for Medicare and receive disability benefits.
- The International Association for Indigenous Aging continues to provide a suite of American Indian and Alaska Native brain health resources as well as opportunities to participate to become a Dementia Friend or Dementia Friends Champion for American Indian & Alaska Native Communities.
The International Association for Indigenous Aging (IA2) is looking to hear your feedback about resources that we could host, create or share with tribal communities. Please reach out to us with any suggestions.