December has been a busy month for the IA² Brain Health team. Over the course of the month, our team has had the opportunity to share with others about our organization and about our new information products. As we closed out 2022, we also took time to reflect on all of our achievements and lessons learned, as well as prepare for the New Year by setting goals.

   --- IA²'s Dave Baldridge, Mary Ann O'Meara, and Breana Dorame had the opportunity to share about the organization and the many new resources available at the CMS LTSS Webinar - Dementia Initiatives and Resources from the International Association for Indigenous Aging.

-- IA² is excited to share the newly released Infographic - Help Reduce Your Risks of Dementia. Be sure to check it out below; it is available for download and sharing!

--- IA²'s Brain Health Advisory Group and Executive Committee met and discussed a variety of topics, including future information products and the upcoming new year. 

-- In case you missed it, be sure to check out previous recordings, including our own Dave Baldridge, sharing his personal experiences on the BOLD Public Health Center of Excellence on Dementia Caregiving webinar: Experiences of Diverse Older Adults Living with Dementia as well as, IA²'s Mary Ann O'Meara sharing about the organization and the many new resources available at the Addressing Alzheimer's in Indian Country Webinar.

Be sure to check out our ever-evolving Brain Health Resource Library for American Indian and Alaska Native communities, available on our website.

           -- Ideas for Tribal Public Health Approaches to Dementia - a menu of activities for health & public health
           -- Banner Alzheimer's Institute releases "Walk with Me" CD with Native music for people living with dementia
           -- Research - Spirituality as a Coping Mechanism for Dementia Caregivers
           -- Resources – Administration for Community Living’s Brain Health Resources

In other IA² news:

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Original Story from Smithsonian Voices

In the Northern Hemisphere, the December solstice is the year’s day of least sunlight, when the sun takes its lowest, shortest path across the sky. North of the Arctic Circle, it is the midpoint of the period of darkness, when even twilight doesn’t reach the horizon. We asked a few of our Native friends to share traditions they’ve heard about the winter solstice. Their answers highlight winter as a time for storytelling.

Dennis Zotigh ~ December 19th, 2017

"The Snow Snake Game," by Ernest P. Smith (Seneca, 1907–1975). Tonawanda Reservation, New York. Indian Arts and Crafts Board Headquarters Collection, Department of the Interior, at the National Museum of the American Indian. 26/2224

In the Northern Hemisphere, December 21 will be the year’s day of least sunlight, when the sun takes its lowest, shortest path across the sky. North of the Arctic Circle, it will be the midpoint of the period of darkness, when even twilight doesn’t reach the horizon. As we did before the solar eclipse in August, this December we asked our Native friends to share traditions they’ve heard about the winter solstice. Their answers highlight winter as a time for storytelling.

Ojibwe (Minnesota Chippewa Tribe): This description of winter in many Native communities was prepared by the Indian Land Tenure Foundation/Lessons of Our Land as background for teachers:

Like many events in American Indian culture there is a proper time and place for all activities. Traditional storytelling is reserved for the winter months for many tribes. This was a practical choice given the fact that during the other season's, people were busy growing, gathering, and hunting food. It was in the winter, with the long dark evenings, the snow and wind blowing outside, that telling stories was a way to entertain and teach the children. Another reason is that many traditional stories contain animal characters. To be respectful, people waited until the winter when animals hibernate or become less active so they cannot hear themselves being talked about.

To have a storyteller tell you a story is like receiving a gift. To be respectful, a gift of tobacco is offered to the storyteller before the story begins. The storyteller will often take the tobacco outside and place it on the earth as an offering to the spirits of the story.

San Carlos Apache (Arizona): This reminds me when I was young. My grandfather would ask a really older man to come visit. We would eat dinner; they would visit, smoke. Then my grandpa would put a bundle at his feet. Soon he would start telling stories most of the night.

Ho-Chunk Nation of Wisconsin: We have to wait for the Winter Moon, and there has to be snow on Mother Earth for those stories.

Blackfoot (Calgary, Alberta): Blackfoots are the same with the snow and stories.

Acoma Pueblo (New Mexico): The winter solstice marks our New Year in Acoma. We mark the time with ceremonies not privy to the public.

It’s also the time of haamaaha, storytelling of the coyote, stories of heroes, stories of the animals, sharing of knowledge. My parents said that when you call haamaaha, people will arrive with piñon nuts gathered in the fall that are roasted and shared.

Passamaquoddy (New England): In traditional calendars in the Northeast, the solstice is always marked. For my folks it’s a sign that the frost giants will be returning to the North.

Assiniboine/Sioux (South Dakota): Waniyetu [winter]—time for gathering can'sa'sa [red willow bark] while the Thunder is gone.

Syilx (Washington State & British Columbia): What I know is that it marks the point in time when our Winter Ceremonies can be held. My grandmother sometimes held her first ceremony of the winter at this powerful time. We have winter dance ceremonies; prayers for the new year to come, for the berries, roots, four-leggeds, and fish—the four Food Chiefs; prayers for our families and ourselves. There are songs, dancing, feasting, and a give-away. This is held during the evening and can go all night, depending on the number of sacred singers who come to share. The ceremonies are called winter dances. Or my grandfather also called them Chinook dances. In our territory to the south in Washington State around Nespelem, my grandfather told me of one dance ceremony lasting ten nights in a row!

Original Story from the Alzheimer's Association

November 30, 2022

Valerie Jones, a member of the Navajo Nation, previously served as the health services administrator at Navajo Department of Health, Division of Aging and Long-Term Care Support. She currently works with the Indian Health Service as their elder health care data coordinator.

Having administered aging programs through the Navajo Department of Health to the more than 110 communities within the Navajo Nation, which is about the size of West Virginia, Jones has seen the health care needs of communities across Arizona, New Mexico and Utah. “I work with IHS partners in community living and with our leadership teams across the states to create change,” she says. “Having seen how important it is to be educated about our brains and how they may change, and how Alzheimer’s and dementia affect families, I continue to work toward more educational programs to reach more people.”

One piece of this puzzle, which Valerie calls integral, is the training of new IHS Elder Health Program team members, particularly about behaviors seen with Alzheimer’s and dementia. “Everyone, regardless of where they live, should educate themselves about dementia. We started training teams in New Mexico, and now 38 centers located there have received training about the signs of dementia, the behaviors, and stages, and, importantly, the excellent resources available through the Alzheimer's Association. I am so grateful for everyone involved, and all the progress that is being made.”
 

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Perceptions of Alzheimer's and dementia

- About two-thirds (65%) of Native Americans say that they know somebody with Alzheimer’s.
- Only 25% of Native Americans say that they are worried about developing Alzheimer's disease.

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Valerie coordinates with teams across Navajo Nation to ensure that everyone has ownership of — and pride in — their local education programs. When she was working with the Navajo Department of Health, she learned of this new career opportunity to focus on data, an area she calls ‘vital.’ “We must be able to obtain data about the health of our tribes: collect it, analyze it and then use it to inform decision-making. This role completely piqued my interest, especially the ability to work on relationship building and working side-by-side with tribes.”
 

A Commitment to Community

There is no word for Alzheimer’s or dementia in Navajo. In their language, the idea of a person ‘changing’ equates to becoming a whole different person, and that is not necessarily true of Alzheimer’s and dementia, Valerie says. “Yes, the behaviors of individuals diagnosed with Alzheimer’s or dementia will be different, but the essence or spirit of the individual remains.” Another gap is communication around a diagnosis. “It’s so important for physicians and nurses to connect with community members by taking extra time to explain a diagnosis. Most tribes don't have access to a neurologist or neuropsychologist, and being referred out of the area means a 3-5 hour drive. I know the hurdles, because I have seen them myself, and that is why I am committed to making a difference.”
 
As a member of Navajo Nation, Valerie understands the needs of her community and needs of other tribes across the country. “Coming from a lifestyle where there is no running water; or electricity, with family members self-medicating or going undiagnosed, I understand how complex social issues are in tribal communities. We value our culture, and for my family, it was a choice to live off the land. My grandfather wanted us to grow our own food, everything organic and natural. He did not want electricity or water from unfamiliar places. For many tribal members, this is a lifestyle choice. However, in modern society, technology — and the lack of it in many tribal lands, and therefore in community programs — has been a barrier. Being from Navajo Nation and knowing the language and culture, we are now working to bridge modern technology and modern ideas with traditional values.”
 
Valerie is proud to work under the leadership of Dr. Marcella Ronyak, director of the Division of Clinical and Community Services at the IHS. Dr. Ronyak and Dr. Bruce Finke — an IHS elder health consultant who has testified before the Senate Special Committee on Aging on the impact of Alzheimer’s on tribal communities — laid the foundation of the IHS Elder Health Program.

In September 2022, the IHS announced its commitment to address Alzheimer's disease in Indian Country, with $662,176 allocated for tribal and urban Indian health systems to develop models incorporating care approaches focused on Alzheimer’s and dementia. For the first time, IHS will allocate funds for this critical need.

Today, one of every five American Indian and Alaska Native adults aged 45 and older reports experiencing subjective cognitive decline. “We must continue to engage tribal health systems and tribes in the awareness of Alzheimer’s disease and all other dementias,” Valerie says, “including the need to support all our dedicated family caregivers.”

The Alzheimer's Association and the IHS are working together to address and improve the health and well-being of American Indians and Alaska Natives living with Alzheimer's disease and all other dementias, and their caregivers. Learn more.
 
IHS participates in the Department of Health and Human Services' Advisory Council on Alzheimer’s Disease Research, Care, and Services as part of the National Alzheimer’s Project Act, in the RAISE Act Family Caregiving Advisory Council and collaborates with the Centers for Disease Control and Prevention, the Center for Medicare and Medicaid Services, the Administration for Community Living and the Veterans Administration, and other federal agencies.

This project was an awarded grant from the Department of Justice. The purpose of this project is to prevent wandering among tribal elders living with Alzheimer’s disease and related forms of dementia (ADRD), develop a robust wandering search and rescue support strategy in the Pyramid Lake Paiute Tribe (PLPT) reservation, and create a replication guide to benefit tribes nationwide. The International Association for Indigenous Aging (IA²) and Pyramid Lake Numaga Senior Center, led by Carla Eben, are working in partnership to develop person-centered and culturally appropriate wandering prevention activities and search and rescue support strategies. The project will serve tribal elders, especially those living with ADRD, their family caregivers, tribal police and first responders, and members of the PLPT. (read more here)

We developed this “Dementia Wandering” information flyer culturally tailored to American Indian communities with featured imagery from multiple tribal communities, including an image of Stone Mother from the Pyramid Lake Paiute Tribe (PLPT).

The flyer includes the following information:

Did you know?

• About 6.2 million Americans live with dementia. The majority of these people are over 65.

What is wandering?

• Wandering occurs when a person with dementia roams around and becomes lost or confused about where they are.

How often do people wander?

• Wandering is very common. It is estimated that 80% of people with dementia will wander. Many people will wander multiple times.

Can I prevent wandering?

• Yes! By taking action, you can help prevent your loved ones from wandering. Disguising doors that lead outside or installing locks is a great start!

Where can I find more information about wandering?

• We have a collection of resources available for caregivers, families, and people living with dementia. Please visit: iasquared.org/wandering/ for more!

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.

IA² provides consulting services as a third-party evaluator to grantees of the federal Administration for Community Living’s (ACL) Alzheimer’s Disease Program Initiative (ADPI). In this role, IA² is a member of the grantees’ grants service team and contributes to the pre-and post-award evaluation process.
IA² works with grantees in the post-award phase to execute the evaluation plan - woven throughout all phases of program implementation. The development of evaluation instruments is accomplished through a co-creation process to ensure that the instrument will meet the needs of the specific population. All team members assist with data collection, and IA² trains grantees on how to perform data-gathering workflows to ensure accuracy and appropriate timing. Once the data has been collected, IA² compiles and analyzes results for stakeholder-specific reports.
Under the ADPI grant, IA² anticipates overseeing the evaluation process for dementia-capable system activities such as:

• Educational Opportunities for an array of audiences to create dementia-friendly communities.
• The delivery of care consultation to caregivers of people living with dementia and affected clients living alone.
• The delivery of leader training, including Dementia Friends Champion, Music and Memory®, Powerful Tools for Caregivers, Savvy Caregiver in Indian Country (SCIC), and Walk with Me.
• The implantation of programs for caregivers and/or persons living with dementia (PLwD) such as Dementia Friends, Maintain a Healthy Mind, Music and Memory®, Powerful Tools for Caregivers with Session Zero program, Savvy Caregiver in Indian Country (SCIC), and Walk with Me.

Some of the outcome measures that these activities will report on include attitude, behavior, caregiver burden, confidence, knowledge, quality of life (QoL), engagement, relevance, and satisfaction.
 
For more information about Collecting and Analyzing Data, check out The University of Kansas’s Community Tool Box.
 
If you would like help telling your story, improving your programs, demonstrating program effectiveness to sustain funding, or need an evaluator as part of your grants’ services team, please contact admin@iasquared.org.
Join us at a Dementia Friends for American Indian and Alaska Native Community information session.
 
About ADPI Alzheimer’s Disease Program Initiative (ADPI)
These grantees’ programs will bring dementia-capable services and supports to the communities they serve, expanding existing home and community-based service systems for persons with Alzheimer's disease and related dementias (ADRD), their families, and their caregivers. The initiative supports the provision of direct services, evidenced-based interventions, and dementia-specific training for formal and informal caregivers.
As part of this cooperative agreement, the Administration for Community Living (ACL) requires that programs include an outcome-based evaluation design that will demonstrate program impact and contribute to the guidance of future programmatic components.
 

"In my ancestors' time, the Wanietu Iyawapi or Winter Count was how we recorded our history from "first snow winter to first snow winter." The Winter Count was the way we passed down our history from one generation to the next. This practice was different for different tribes, although most Native people painted on hides, which they used as clothing, shelter, and ceremonial objects. Tribal members painted with personal colors and symbols. The Lakota, Cheyenne, Arapaho, Kiowa, and Blackfoot all created Winter Counts as part of their cultural ways. It was a great honor to be chosen by the community to record the Winter Count because this was the history of the tribe to be handed down to the next seven generations to come.

Watch the video below as well as check out the story to read more about the Winter Count.

Download the first in a planned 6-series ready-for-use rack card for American Indian and Alaska Native nations and tribal serving organizations.

This healthy eating-focused message series includes practical advice and culturally relevant recipes.

Rack cards can be distributed through senior centers, inter-tribal organizations, healthcare facilities, administrative offices, tribal newspapers/radio stations, and as mailers to tribal members. Tribal meal delivery programs can incorporate weekly distribution for in-person and home-delivered meals. High-resolution files are available for download.

Rack cards are 3.67″ x 8.5″ and can be laid out to print 4 to a standard size page. 

As sovereign nations, tribes are uniquely situated to use law as a public health tool to promote the health and well-being of their communities. Additionally, federal law creates a framework that governs the relationships among tribes, states, and the federal government that can affect tribal public health. (U.S. Centers for Disease Control and Prevention, 2017) 

Check out this new policy report for American Indian and Alaska Native (AI/AN) communities. This report explores existing tribal laws and policies related to Alzheimer's Disease and Related Dementia for Native communities.

Law, regulation, and policy are all  essential public health services as tools to promote equity and improve public health.

From the International Association for Indigenous Aging by Splaine Consulting.

 

 

Designed by and for American Indian and Alaska Native Communities!

Access high resolution 1) Adobe pdf, 2) .jpg, 3) .png and 4) original design files for use in your community.

Looking for a different customized picture for your community? For a limited time contact us to request an image swap.
We have $250 printing stipends for tribes and urban Indian organizations and can ship flyers directly to your community.
Contact us for design help or info on printing stipends at admin@iasquared.org.
 

Special thanks to our Brain Health Advisory Group for time and input in to this document.

During this webinar, certified holistic health coach and nutrition consultant Donell Barlow (Ottawa/Yurok) discusses the use of traditional foods to prevent illness in Native American communities and encourages attendees to incorporate traditional foods into their LTSS programs. 

If you are looking for additional information or opportunities, be sure to check out the IA²  Brain Health Resource Library. You can also check out the IA² Calendar of Events by clicking the button below.