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The January Brain Health Resource Center In Action
We are excited to share our December and January updates. It has been a busy start to kick off the new year for the IA2 team!
- We piloted our first virtual Dementia Friends for American Indian and Alaska Native Communities information session and Dementia Friends Champions training.
- The National Plan to Address Alzheimer’s Disease has been updated with a new prevention goal.
- The National Plan gave a shout-out to IA2 and recognizes the work done adapting the Dementia Friends content for American Indian and Alaska Native Communities and other great work we’ve done with our tribal community partners and friends. Check out the impact IA2 has made!
- We are excited to start sharing healthy traditional recipes on our Facebook page to gin up interest. Be sure to follow our page and share.
- IA2 pulled together a web resource titled American Indians, Alaska Natives and Dementia, Memory Changes, and Alzheimer’s Disease – Facts and Figures.
- Our Advisory Group met this month and featured presentations on dementia risk reduction by Matthew Baumgart from the Public Health Center of Excellence on Risk Reduction and findings from an environmental scan on tribal laws and policy on Alzheimer’s and dementia in tribal and Alaska Native communities by Splaine Consulting. Each presentation was followed by engaging facilitated small group break-out sessions. We are also very excited to welcome a new member to our advisory group, Dr. Amanda Boyd.
In other IA2 news:
- Check out one of our latest News releases: Department of Health and Human Services (HHS) Adds 6th goal to the National Alzheimer’s Plan: Accelerate Action to Promote Healthy Aging and Reduce Risk Factors for Alzheimer’s Disease and Related Dementias
- IA2 Awarded Department of Justice Elder Wandering Grant
- IA2 had a social media campaign in December and January promoting flu vaccines including messaging for elders and dementia. Follow on Twitter for future campaigns and social media messages you can use.
- We hosted a Dementia support group facilitator training for Native communities in partnership with Alzheimer’s Los Angeles.
- We also hosted Native Elder Caregiver Support Group Facilitator Training by the University of North Dakota with funding from the CDC Foundation.
- Dr. Jolie Crowder participated in the Native America Calling radio talk show sharing information and opportunities regarding caregiving and available resources on the IA2 website.
- Work continued growing the Native Brain Health Resource Library
- Including additions of an Alzheimer’s Disease Fact Sheet and “What Are the Signs of Alzheimer’s Disease?“
Our CDC Foundation project team is hard at work on activities that are a great complement to our Brain Health Resource Center work. With support from the CDC Foundation, IA2 is offering a continually growing
>> Caregiving resource library!
IA2 continues to offer print-on-demand stipends of $250 for flyers and posters from the IA2, ASTHO, and National Council for Urban Indian Health (NCUIH) suite of materials developed with funding from the CDC.
Promising Practice: Food Pathways as Medicine for Dementia in Tribal Communities
By: Mary Ann Frank, Mike Splaine, Jolie Crowder
Denver Indian Health and Family Service, an Urban Indian Health Program, hosts the Spirit Within Project. The project offers workshops focused on traditional food and foodways and traditional and contemporary movement, funded by the Centers for Disease Control and Prevention (CDC). The Denver program aims to improve social and community connectedness, resiliency, and mental and physical health by connecting community, land, foods, and culture. Traditional food resources, recipes, and classes are part of a pathway to better health identified within their community for their 3-year Tribal Practices for Wellness in Indian Country project. (Applications are due 3/16/22 for new 5-year awards.)
Indigenous communities have long recognized that food is medicine. Nutrition and diet-related issues are risk factors for dementia now recognized by public health. Research has also suggested that “heart-healthy” eating like the traditional Mediterranean diet is brain health, too.
And there is little question of the diabetes and dementia risk connection. Experts such as Dr. J. Neil Henderson (Choctaw) point out that when it comes to diabetes in Indian Country, it is not just about a person’s choice to stop eating a traditional diet. It is a problem linked at the environmental level. Dr. Henderson shares more insight into the connection between health disparities, food, and dementia in a recent blog post that you can view here.
Based on what we now know, it’s easy to make a quick leap to promote the connection between healthy eating and dementia risk reduction. But to do the best job, it’s important to really understand the social issues facing many American Indian and Alaska Native people and communities, including food insecurity. Health organizations have used the concept of “food deserts” to help understand this equity issue. They are still working on ways to fix it.
A food desert is an area with little or no access to fresh, healthy, affordable food and high poverty rates and/or low family incomes. In many communities, grocery stores that carry healthy food are far away. While fast-food restaurants and convenience stores with few healthy options are close by. “Both American Indian and Alaska Native tribal area populations are mostly rural; as a result, only 25.6% of all tribal area populations were 1 mile or less from a supermarket (defined as walking distance), compared with 58.8% of the U.S. population (Kaufman, 2014).”
Partnerships With Native Americans is actively working to relieve food insecurity for Native Elders, children, and families by partnering with dozens of reservations and food banks. According to their website, 23% of Native American households experience low food security. If you or someone you know is struggling with food security, you can click here to find a food bank nearby.
Navajo Nation, a designated food desert community, created FVRx program (Fruit and Vegetable Prescription program model) to increase access to healthy produce. They reached more than 9,050 residents. Health clinic staff and small stores are partners in promoting the program to local families. Families receive vouchers for produce after attending nutrition classes. Families can refill their FvRx prescriptions as needed. The CDC-funded project has impacted families, children, retailers (stocking more produce), and clinical and community health teams.
Food sovereignty is a newer related term that aligns with many of the cultural principles of American Indian and Alaska Native communities. Food sovereignty means securing a food supply in harmony with the land, water, and culture. It is about control. Cultivating, consuming, and preparing food in a way closer to ancestral tradition and having food choices under the guidance and governance of those consuming it. Food sovereignty empowers tribal communities to address issues of both hunger and health.
Valarie Blue Bird Jernigan (Choctaw) leads the Center for Indigenous Health Research and Policy at Oklahoma State University. Her Center is devoted to collecting knowledge and convening Alaska Native, Osage, and Choctaw community members to find and spark new ideas to achieve and sustain food sovereignty. Check out a short film about her team’s work to address tribal food systems.
According to her video, surplus food distribution in the 1960s through the 1990s was the opposite of food sovereignty. Although the U.S. government does supply food assistance to low-income tribal members, like other low-income Americans, programs are often limited to foods that are lower in nutritional value.
Dr. Jernigan and her team at The Center and the University of Hawaii recently received additional funding from the Office of Minority Health (OMH) to expand and extend their work. Partnering with the Osage Nation and the National Council of American Indians, the Center is studying Community Supported Agriculture (CSA) programs. They how to find out how other Indigenous communities can use these findings to improve Native food systems in their communities. Senior research director Tonya Wapskineh (Cherokee and Prairie Band Potawatomi) is a long-time tribal diabetes prevention educator in the Cherokee nation. She describes this as working an added way to address diabetes prevention. “Because to change the food environment will lead to changes in diabetes, which means less suffering from the effects of living with diabetes for decades.” Food sovereignty is also a priority for multiple Tribal Practices for Wellness in Indian Country projects.
Many programs, projects, and activities are underway in tribal communities across the U.S. that address nutrition, healthy foods, food insecurity, food sovereignty, or related chronic disease health issues. Tribal staff can learn more by talking with departments within their tribe, neighboring tribes, or searching for regional or national activities. Non-tribal public health staff might learn more by reaching out to tribal staff in their state to talk about their current programs and discuss how they might embed dementia awareness and dementia risk reduction messaging into existing programs.
If you have resources, flyers, program success stories you would be willing to share, please email: admin@iasquared.org
Links to more resources or chances to learn more:
~~ Attend the fifth annual conference on Native American Nutrition hosted by the University of Minnesota.
~~ My Native Plate – a nutrition education tool; I/T/U providers can link through to order tear-off pad placemat sized guides
~~ Activity manual to honor Alaska Native cultures and traditions in a care facility – a training resource to integrate cultural activities and traditional foods in long-term care and skilled nursing facilities.
~~ Indian Health Service Online Catalog of Education Materials and Resources
NEW Deadline to complete the Native Urban Elder Needs Assessment Survey (NUENAS 1.0)
The deadline to complete the Native Urban Elder Needs Assessment Survey (NUENAS 1.0) has been extended to June 30, 2022! The Coalition on Urban Indian Aging (CoUIA) is conducting the survey to learn more about the health and wellness of Native elders who live in urban settings. Urban Indian organizations (UIOs) that participate in NUENAS 1.0 will receive a $250 honorarium and up to $2,500 in incentives for elders who complete the survey. To learn more about the survey visit CoUIA’s website by clicking here. |
Community Voices Blog: Dementia Caregiving: The Last 10 Days
This article is a reprint of an article running in the winter edition of the Administration for Community Living Title VI newsletter.
By: Jolie Crowder, PhD, MSN, RN, CCM
International Association For Indigenous Aging
The last ten days, I had a front-row seat to dementia caregiving when my husband’s mother came to stay with us as she was transitioning into a memory care apartment near us. It was a close-up view not just into dementia caregiving but also into broken “systems” and missing support.
My husband is the primary caregiver for both his mom and her brother. He is also the only one of his generation left in the immediate family, the only child and grandchild. His mom has moderate-severe vascular dementia that has taken a turn for the worse in the last several months. She had been staying in the family home with her 72-year-old intellectually disabled brother. He passed away unexpectedly during the ten days she was with us. Their mom died two years ago, right at the start of COVID. My husband was also her primary caregiver until she passed. So, not his first caregiving rodeo.
My husband managed their care from our house a couple of hours away, routinely driving back and forth for everyone’s doctor’s appointments. He also took care of the upkeep for both houses and the bills for his mom and uncle. His mom receives a small pension from her state job. His grandmother had thankfully put some money aside to help cover long-term care needs for both of their children. Otherwise, I have no idea what their living situation and our lives would look like.
His mom and uncle had amazing caregivers (not formally trained) who came in to help almost around the clock that my husband coordinated. When the paid caregivers needed time off, it usually meant my husband had to take time off from his job or spend the weekend there. Taking on everyday tasks like meals, meds, and bathing. His mom suffers from incontinence. So, every morning includes a big load of laundry, trash runs, scrubbing bed covers and floors, and a lot of effort to try to convince her a shower is a good thing. I swear, it is like listening to the “dementia whisperer” when he talks to her. If he can’t convince a person to do something with his kind, soothing voice, nobody can. Sadly, a shower is/ was never in the cards most days. At least not without dozens of attempts, hours passing, or a battle of wills. Thanks to the challenging behavior changes that have taken hold from dementia. Apathy. Depression. Resistance.
It’s a lot. Some days I can see he just barely keeps it together. He is not alone. According to the National Institute on Aging, more than 40 million people provide unpaid care for someone each year. One in three (1 in 3) American Indian and Alaska Native adults are caregivers. That is more than the general population. Like my husband, more than half of those folks have provided care for more than two years.
Research has found that while caregiving is rewarding, it is a challenge and presents a lot of long-term risks and challenges, including: depression, anxiety, heart disease, cancer, diabetes, acute injuries (e.g., sprains or strains).
Dementia caregiving is tough and takes more than a mental and physical toll. A 2015 article estimated that families of people with dementia spend $61,522 a year in the last 5 years of life— almost twice as much as those who died of other causes. Minorities, people with lower education and lower incomes, are more likely to have higher out-of-pocket costs from dementia. My husband had to take an unpaid leave of absence last month to help care for both his uncle and his mom. This was after using up all of his paid sick and vacation leave for the year, mostly taking care of them. He is still out of work.
The caregiving role is tough, but the worst part is how almost impossible it feels to find help and access supports and services. Trying to navigate both the health care and aging “systems” most days was (and is) almost more than my husband can stand. Getting a person just to answer the phone or return a call in less than a week is a miracle. What he really needs is a live person to give him time, answers, and follow-through. Not a form letter eight weeks later from Medicaid notifying him that his uncle’s application was finally approved. A week after he passed away.
The one bright spot in the hunt for services and supports has been memory care facilities. Yet, few families have the resources to afford them. Safe, accessible spaces; meaningful socialization; emotional support; appropriate therapies; trained staff; interdisciplinary approaches to care coordination. These shouldn’t be considered luxuries for people living with dementia and their caregivers.
We can do more, and we can do better for caregivers and people living with dementia. For all caregivers really. Consider doing one thing today: read an article, pick a program or service you can start, engage in community conversations with caregivers, or just pick up the phone when caregivers call.
Check out some of the following resources or trainings for ideas.
• Visit the American Indian and Alaska Native Resource Center for Brain Health Online Resource Library for more tools.
If you are willing to share resources in our online resource library, please send them to admin@iasquared.org.
IA² Awarded Department of Justice Elder Wandering Grant
The International Association for Indigenous Aging (IA²) is honored to have been awarded a three-year grant from the U.S. Department of Justice (DoJ) for its Kevin and Avonte Program: Reducing Injury and Death of Missing Individuals with Dementia and Developmental Disabilities. This program supports local efforts to reduce injuries from individuals with dementia who wander through innovative programs and resources.
– Up to 60% of people living with dementia will wander at least once, with many wandering repeatedly.
– Nearly 50% of elders who wander will suffer a fall, fracture, injury or some type of weather type exposure.
– Survival rates for wandering elders decrease dramatically after 24 hours.
– This can be difficult for rural, isolated tribal communities, which may not have immediate access to formal search and rescue.
– Research and community work has identified tips to help prevent wandering and strategies communities use to respond faster and more efficiently when it happens.
IA²’s project, “Creating a Tribal Elder Safety Net to Address Wandering,” will work with the Pyramid Lake Paiute Tribe of Nevada to create a fast response procedure to locate tribal elders with dementia who have wandered. The project will incorporate tribal first responders, volunteers, and family members in response protocol and educational resources. This first-of-its-kind effort will help inform other tribal communities looking to support their elders who wander due to dementia.
Stay tuned to view our educational resources in an online wandering resource library soon! If you would like to learn more about wandering and why it occurs, please visit Wandering Tendencies in Patients with Alzheimer’s Disease and Dementia (upmc.com). For more information on how you can help prevent wandering behaviors, please visit Prevent Wandering Behaviors Archives – Help For Alzheimers Families.
Dementia Friends Updates
Dementia Friends will return this March for another virtual Information Session and Champion Training pilot session! We have been working with American Indian and Alaska Native communities to develop the Dementia Friends content to better meet the needs of our communities.
We are very excited to welcome our newest Dementia Friends tribal community affiliates. We look forward to piloting our newly revised content in these sessions. We have recently made updates to help readability and retention!
If you are interested in learning more about the Dementia Friends Initiative or attending our upcoming session, please visit our Dementia Friends page by clicking here.
Free Online Drop-In Support Groups Available
IA²’s partner HFC (formerly Hilarity for Charity) offers commitment-free support groups for families & friends of people living with dementia or memory problems. Join A Free Online Drop-in Support Group Today! |
American Indians, Alaska Natives and Dementia, Memory Changes, and Alzheimer’s Disease – Facts and Figures
What is your New Years Resolution?
Make your health a priority this year. Consider making some of these changes to help keep your brain and body healthy as you age!
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Brain health e-News for and by American Indian and Alaska Native communities.
[…] benefits nutrition can have on brain health and how these issues are getting attention in American Indian and Alaska Native tribes. A variety of programs and key players in these areas are working to address food insecurites, food deserts, and access to healthy foods. Learn more and read the full article here. […]