Initiatives

Resource – Native Alzheimer’s Disease Research, Education, and Resources

The University of Washington Alzheimer’s Disease Research Center (ADRC) has a special focus on urban, rural, and reservation-dwelling American Indian and Alaska Native populations in the Pacific Northwest and surrounding areas. The ADRC is an NIH-funded research resource center associated with the University of Washington Medicine Memory and Brain Wellness Center.

The website maintains a variety of resources, including video recordings and slideshows of research talks and presentations, for researchers, students, and clinicians interested in Alzheimer’s disease and related dementias in American Indians and Alaskan Natives, and will be regularly updated with new content.

 

For questions about the distribution and reuse of the materials on the University of Washington ADRC website, please contact annikn@uw.edu.

Announcement – Participants Needed for Research to Help Change the Way We Talk About Dementia and Alzheimer’s Disease

Native American Participants Needed for Research to Help Change the Way We Talk About Dementia and Alzheimer’s Disease

The Dementia Nomenclature Initiative is a national effort to improve how we talk about dementia and Alzheimer’s disease, with the aim of reducing the stigma associated with these conditions and improving how we interact with doctors, nurses, and other clinicians. The focus group is being held to ensure that Native American people are adequately represented in this effort. Join them for a one-hour online discussion to share your experience as a caregiver or as a person living with dementia or Alzheimer’s disease.

For those that are interested in applying, click here.

Check out the flyer here:

210716 Aug 12 Native American Focus Group Recruitment Flyer

 

For more information, email Kara at info@aboutscp.com.

Community Voices Healthy Brain Blog – The Story of Pesa Sooname

Pesa Tabeno-How Mu, Nu Carla me nanea. Nu Kooyooe Tukadu. Wono Panunudu kwaetoo kemmudu. E numunanea Paze Wupu Pasa Teepu Tonega.

My name is Carla Eben. I am Northern Paiute; my band name is the Cui-ui Eater from Pyramid Lake, Nevada. My Paiute Name is Sandy Soil Dry Earth Flower, or Desert Flower, which was given to me in Ceremony. I am currently the Numaga Senior Services Director at the Pyramid Lake Tribe. I started there in 2017. carla

I wanted to share with you a story about my experience as a Dementia Friendly Nevada Champion.

BUT FIRST, Let me take you back to what inspired me to become a Champion in the first place…

In the Fall of 2017, I made a two-hour drive on Interstate 80 to Winnemucca, Nevada, to my first-ever training on dementia. I was excited to be going to learn something new.

In training, we learned all about dementia. The presenter used very vivid real-life examples. She defined the disease, described symptoms, and shared statistics. It was really sad to hear.

After the session was over, she asked if we had any questions.

I noticed I was the only Native present, so I asked her if she sent her announcement out to Indian Country.

Her response was: “Yes, but they never come!”

As I drove home that evening, I kept hearing her words over and over again, “Yes, but they never come!”

Before I reached home, I decided that I was going to change that.

The next day, I emailed the health center on our reservation to ask if IHS [Indian Health Service] does any types of training on dementia. I asked if we had a doctor that specialized in serving our elder population. To both questions, the answer was no.

Next, I reached out to a friend from the Cooperative Extension office at the University of Nevada, Reno (UNR). I excitedly told her about the training I attended. I told her I needed someone to come and do a training at Pyramid Lake on dementia for our elders and our caregivers.

About a week later, I received an email from her. She had found Dr. Jennifer Carson at the UNR Dementia Engagement, Education, and Research (DEER) Program. We scheduled a meeting with Dr. Carson. She said she had never worked with any tribes and would be excited to do so. Over several meetings, we planned our training. It was a good learning experience for both sides. As I learned more about dementia, Jennifer learned more about the Northern Paiute Tribe.

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Carla Eben pictured with Jennifer Carson (UNR) and Peter Reed (Sanford Center on Aging)

In 2018, with Jennifer’s help, I applied for a grant from the State of Nevada Aging and Disabilities Division to start Nevada’s first dementia-friendly community group within a tribe. Pyramid Lake Paiute Tribe won! We named our group Pesa Sooname Advisory Group. “Pesa Sooname” is Northern Paiute for ‘good thought’ and ‘good think.’

This grant followed the collaborative Dementia Friendly America (DFA) model. It is designed to help different “sectors” of a community become educated and more inclusive of people living with dementia. But our reservation, like many others, doesn’t have the usual “sectors” like businesses, hospitals, banks, restaurants, etc. So, we had to be creative and change the model to fit our tribe. We focused on our departments, including the Health Center, Social Services, Mental Health, Emergency Response, Victim Services, Tribal Court, Tribal Administration, Housing, etc.

As a first step, Pesa Sooname worked with the UNR Sanford Center for Aging to complete a comprehensive Dementia Community Needs Survey. Based on what we learned, we created three objectives for the project:

  1. To educate our Elders and caregivers,
  2. To educate our Tribal Departments, AND
  3. To educate our neighboring tribal communities on dementia and brain health

We created the last objective because we realized that neighboring tribal communities might not have the resources to bring training to their reservations on brain health and dementia.
We hosted several community education sessions for members of the tribe, and in 2019 hosted the first Nevada Tribal Summit on Brain Health and Dementia. More than a hundred people from 14 different tribes and national speakers from across the country came together for the Summit. The Healthy Brain Initiative Road Map for Indian Country was a big focus of the Summit. We incorporated our Native traditions, including opening prayer, a traditional Northern Paiute song, and color guard to and recognized “all our relations,” past, present, and future. At the end of the Summit, 100% of participants said this should be an annual event. carlacommunity

Our efforts have been recognized and are actually featured in the Road Map for Indian Country! After the Summit, we hosted a talking circle with members of my tribe, using the questions in the Road Map to identify a new set of goals for brain health. Later, I was asked to be on a panel at the National Title VI Training in Minneapolis, Minnesota, for Dementia Assistance for Indian Country. I have spoken to quite a few groups about our work.

I am content that we accomplished all of Pesa Sooname’s original goals. Also, that we have established a partnership with Jennifer at UNR and other non-tribal agencies in Northern Nevada.

Dementia is definitely on the rise in Indian Country. The more we learn about it, the better we can help our Elders and tribes.  I am excited to see where we go from here.

Thank you,

Carla  J

Promising Practice – What does “a public health approach” mean in Indian country?

By Mike Splaine, Splaine Consulting and Jolie Crowder

July 18, 2021

Featuring:

Dr. Tassy Parker, University of New Mexico, Center for Native American Health

Ryan Eagle, North Dakota State University, American Indian Public Health Resource Center

“Tribes inherently operate their own public health departments’ because we know, at a deep level, that it is hard to describe to outsiders, that the health of each of us is intertwined with the

Dr. Tassy Parker at Community Workshop

Dr. Tassy Parker at Community Workshop

health of all of us and the environment in which we live,” This, according to Dr. Tassy Parker, an enrolled member of the Seneca Nation (Beaver clan) and tenured Associate Professor of Family and Community Medicine at the University of New Mexico (UNM).

During recent meetings of the IA2 Brain Health Advisory Group, breakout group discussions focused on identifying entities within American Indian and Alaska Native communities that contribute to the delivery of public health services for people living with Alzheimer’s or related dementias (ADRD) and their families. Groups created complicated visual diagrams of interconnections and disconnections, ranging from tribal leadership to judicial systems.

Recognizing that many tribal health organizations have few persons formally trained in public health or assigned public health duties, capacity challenges exist to using public health approaches.

Yet, “It may not matter who wields the tools of public health as much as that they are used,” according to Ryan Eagle, Research Project Manager at the American Indian Public Health Resource Center at North Dakota State University. Eagle is an enrolled member of the Three Affiliated Tribes of the Fort Berthold Indian Reservation in North Dakota.

A core public health approach[i] involves using data as the basis of planning and demonstrating impact (surveillance and monitoring). Unfortunately, little published data exists about dementia and caregiving in Indian country.

In a recent interview, Eagle said, “Tribes do have the data they need to initiate public health approaches, but it may be siloed; it may be in the form of wisdom and memory of our Elders; ryaneagleheadshotand it may be scattered–but it can be brought together if tribal leaders are engaged and asked, not told.”

As sovereign nations, tribes own their data. Current best practices call for a Data Use Agreement or some other formal mechanism that governs access, permissions, and release of tribal data to outside organizations.

Another hallmark of a public health approach involving data is the need to assess results/ evaluate the success of program interventions. Tribes should plan for how to assess results, together with community stakeholders, before starting the work. “Taking Tassy’s words to heart means the community needs to have a strong voice in identifying what success of a program or activity looks like for them. Many pre-packaged chronic disease programs can look like they are failures when in fact, they are making positive change,” offered Eagle.

Indigenous principles of evaluation and community-based principles of research (CBPR) have been met with rising interest in the U.S. The Centers for Disease Control and Prevention’s (CDC’s) Good Health and Wellness in Indian Country (GHWIC) program worked to incorporate an indigenous approach to evaluation[ii]. A big focus of GHWIC was taking a holistic approach to health promotion and chronic disease, addressing a variety of chronic issues with culturally appropriate strategies.

Two countries, Australia and Canada, remain at the forefront of acknowledging and meaningfully embedding these practices and principles. At the local level, Parker’s Center for Native American Health at UNM offers a CBPR Institute and an annual Community Health Assessment Institute for tribal communities.

The closer you look, you will find the tools and traditions of public health align well with tribal culture and helping to address dementia and caregiving issues.

For more information, request assistance from IA2 about accessing brain health resources, or view these additional resources:

[i] See https://www.cdc.gov/aging/aginginfo/pdfs/A-Public-Health-Approach-To-Alzheimers.pdf

[ii] See https://www.cdc.gov/pcd/issues/2019/18_0655.htm

 

Funding Opportunity – $15,000 to Implement Road Map for Indian Country by National Indian Health Board

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Applications due by August 13, 2021, at 11:59 Pacific Standard Time. The National Indian Health Board, Brain Health for Tribal Nations recently posted a funding opportunity designed for Tribes and Tribal Health Organizations to assist them in implementing strategies from the Road Map for Indian Country. NIHB will fund up to 12 proposals from Tribes or Tribal Health Organizations for up to $15,000 each.

Applications for this opportunity are due by August 13, 2021, at 11:59 Pacific Standard Time. NIHB will also be hosting a pre-application webinar on Thursday, July 22, 2021, from 3:00-3:45 pm ET to register online, click here!

To read more about this opportunity and see if your organization is eligible visit their website at Funding – NIHB!

July Resource Center Update

July Resource Center in Action

IA2 is very excited to bring many updates to the Resource Center in Action. IA2 has been creating connections with various organizations and growing in capacity. “Resilience for Tomorrow… Together,” the American Indian elders conference hosted by the National Indian Council on Aging (NICOA) will unfold in Reno, Nevada, August 1 – 6, 2021. The International Association for Indigenous Aging is hosting multiple sessions and trainings on Alzheimer’s disease and dementia. 

These sessions include:

Training is provided through the support of grants from the Centers for Disease Control and Prevention (CDC), the CDC Foundation, and Dementia Friends training support provided by the University of Nevada, Reno. Click to learn more

NICOA promo pic

IA2 participated in the Community Health Assessment Institute hosted by the Center for Native American Health at the University of New Mexico. The training is designed to increase the capacity of tribal communities and American Indian-serving organizations to proactively identify the factors that impact the health of their communities and to develop health planning efforts informed by a community health assessment (CHA).

In addition, IA2 had multiple meetings with local New Mexico groups. Meetings included one with the State of New Mexico’s Director of Indian Elder Affairs and the Alzheimer’s Association New Mexico about tribal and pueblo community needs and a brainstorming session on possible strategies surrounding Alzheimer’s and dementia in American Indian communities in the state. 

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IA2 also participated in the National Indian Health Board’s (www.nihb.org) introductory session discussing plans for a national collaborative on brain health. 

IA2 also engaged in an informational webinar with the National Indian Health Board about their plans to convene a brain health learning community in the coming months. Check out the event page of their brain health website for details on future events.

IA2 has continued to host quarterly Advisory Group meetings with the Healthy Brain project’s national multidisciplinary members. The current focus is centered around the needs assessment and creation of a description of tribal public health social networks involved in Alzheimer’s and dementia. These networks provide insight into connections between various levels of interaction in communities including elders, caregivers, family members, health services, organizations, community services, and beyond. The needs assessment is slated to kick-off at the National Indian Council on Aging’s (NICOA’s) elders conference in August. 

IA2 is in the final stages of launching its new brain health website. The new site will feature an updated look, be more mobile-friendly, and feature an online resource library of Alzheimer’s, dementia, and brain health materials and promising practices designed by and for American Indian and Alaska Native Communities. 

annieheadshotIA2’s new Public Health Communications Assistant, Annie Ferguson, has joined us and we are very excited to have her. Read more about Annie, as our featured staff member this month. 

Through continuous growth and expansion, IA2 is committed to gathering information and resources developed by and for American Indian and Alaska Native communities on Alzheimer’s Dementia and Related Dementias (ADRD). 

 

Stay tuned for next month’s Resource Center in Action update!

For questions contact: annie@iasquared.org or Mary Ann @maryann@iasquared.org

 

Service – Public Health Center of Excellence on Dementia Caregiving

 

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The Public Health Center of Excellence on Dementia Caregiving (PHCOE-DC) was established by the BOLD Infrastructure for Alzheimer’s Act funding.

This organization has numerous evidence-based programs for public health agencies that have demonstrated an ability to improve the caregiving experience and the quality of life of thousands of dementia caregivers. These programs have been vetted by experts and have shown to be effective in large and diverse populations.

The website also features a resource library that has a collection of materials, resources, and information to inform and expand programs supporting dementia caregivers. There is a wide variety of webinars, toolkits, and articles designed to help support dementia caregivers and those living with dementia.

To contact the PHCOE-DC visit their website at https://bolddementiacaregiving.org/

D351 Mayo Memorial Building (MMC 729)
420 Delaware Street SE, Minneapolis, MN 55455

Service – Native American Outreach Program

Banner Alzheimers Institute logo

 

 

The Native American Outreach Program, supported by the Banner Alzheimer’s Institute, was launched in 2003 to help foster awareness, care, and scientific understanding of Alzheimer’s disease and dementia in Native American communities through education and outreach activities.

The Native American Outreach program features numerous services for communities and caregivers including conferences and outreach events, the Native American Caregiver Circle group, and customized outreach and education programs designed to increase community knowledge and awareness regarding Alzheimer’s and dementia. They also have programs for professionals and clinical research resources.

To contact the Native American Outreach Program visit their website at https://www.banneralz.org/finding-support/native-american-outreach-program

 

Service – Center for Rural Health University of North Dakota School of Medicine & Health Sciences

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The Center for Rural Health (CRH) connects resources and knowledge to strengthen the health of people in rural and tribal communities. They are a department within the School of Medicine & Health Sciences at the University of North Dakota in Grand Forks, North Dakota. The CRH is home to seven national programs including, The National Indigenous Elder Justice InitiativeThe National Resource Center on Native American AgingThe Native Urban Elder Needs Assessment Survey (NUENAS 1.0), Rural Community Toolbox: Funding & Tools to Build Healthy Drug-Free Rural CommunitiesRural Health Information Hub (RHIhub), Rural Health Research Gateway, and TruServe.

The National Resource Center on Native American Aging aims to identify and increase awareness of evolving Native elder health and social issues. They have developed numerous services including the Native Elder Caregiver Curriculum to assist professionals and relatives/community members who have the responsibility of care for Native Elders in their homes.

The CHR also hosts the annual American Indian Health Research Conference which is a daylong event featuring national speakers, researchers, students, and community members. This conference is an opportunity for students to present their research and to learn about other research happening within American Indian communities. It serves as an opportunity for participants to network and partner with communities, tribal colleges, and researchers on other projects.

To visit the Center for Rural Health visit their website at https://ruralhealth.und.edu/

University of North Dakota
School of Medicine & Health Sciences, Suite E231
1301 N. Columbia Road, Stop 9037
Grand Forks, ND 58202-9037
Telephone: (701) 777-3848
Fax: (701) 777-6779

Service – Tribal Epidemiology Centers

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Tribal Epidemiology Centers are Indian Health Service division funded organizations that serve American Indian/Alaska Native Tribal and urban communities by managing public health information systems, investigating diseases of concern, managing disease prevention and control programs, responding to public health emergencies, and coordinating these activities with other public health authorities.

The mission of Tribal Epidemiology Centers is “To improve the health status of American Indians and Alaska Natives by identification and understanding of health risks and inequities, strengthening public health capacity, and assisting in disease prevention and control.” There are currently 12 Tribal Epidemiology Centers throughout the United States, to learn more visit https://tribalepicenters.org/12-tecs/.

This organization has numerous grant opportunities available. Be sure to check out their webpage to see if your community is eligible for any of these opportunities!

To visit the Tribal Epidemiology Centers visit their website at https://tribalepicenters.org/


TECs have 7 Core Functions: In consultation with and on the request of Indian Tribes, Tribal organizations, and urban Indian organizations, each service area epidemiology center established under this section* shall, with respect to the applicable service area, each TEC addresses these 7 Core Functions in its own unique way.

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