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NEAR: Natives Engaged in Alzheimer’s Research
By: Mike Splaine, Splaine Consulting
Alzheimer’s disease (AD) is a common form of dementia. Still, little data exist on the risk and prevalence of Alzheimer’s Disease among American Indians, Alaska Natives, and Native Hawaiians and Pacific Islanders. Natives Engaged in Alzheimer’s Research is a multi-site, multi-project initiative to examine Alzheimer’s Disease in Native communities and launch interventions to delay or prevent Alzheimer’s Disease. Detecting and treating diseases may be difficult in Native communities due to lack of healthcare resources, cultural beliefs, and possible problems using cognitive tests developed in the White population.
Treatment may need to account for clinical, genomic, biomarker, cultural, and environmental factors with data on health behaviors to assess individual risk of a given disease. “It is hoped that, as is becoming true in cancer care, more precise medicines will eventually allow tailored AD care,” said Kaʻimi Sinclair, one of a dozen investigators on NEAR. “We have very little data about AD in American Indian, Alaska Native, Native Hawaiian, and Pacific Islander populations. Reliable data indicate that the number of older persons in these communities 65 years of age and older will double by 2050, and the number 85 and older will increase 7-fold. “NEAR is a project that has real potential to address disparities,” emphasizes Sinclair.
Illustration or link NEAR A is a multi-site, multi-year, multi-million-dollar effort led by Washington State University.
Until now, no research has addressed Native preferences for communicating educational or recruitment information for AD studies. Native peoples typically prefer visual aids and stories that increase comprehension and effective communication and align with Native traditions.
It is well documented that major tissue banks and both short- and long-term studies do not enroll American Indian, Alaska Native, Native Hawaiian, and Pacific Islander persons in those programs in numbers even close to their proportion of the general population.
NEAR will have several satellite locations that will engage local Native communities. NEAR has 12 key collaborators who are American Indian, Alaska Native, Native Hawaiian, and Pacific Islander, which is a first and an achievement that NEAR Center Principal Investigator and director Dedra Buchwald has been working toward for many years. “All of our work includes Native scientists in leadership positions and community advisors in key roles,” stated Buchwald. Projects include developing and testing provider training to improve detection of dementia in health clinics, using hula dancing as a cultural intervention to delay cognitive decline, and examining the role of sleep apnea and the risk of dementia in later life. “It’s really exciting to work with indigenous serving organizations to build awareness and engagement, developing research questions from the community outward to the clinic,” said Sinclair.
NEAR will be at the forefront of engaging Native communities in conversations concerning their concerns and preferences regarding simple tissue donation to catalog more risk factors and genetic information in these underrepresented communities. Follow the work at www.ireach.wsu.edu.
Community Voices Healthy Brain Blog – Stop Talking, Start Listening
By: Ron Epps, New Mexico Alzheimer’s Association
I am new to the Program Director position at the Alzheimer’s Association – New Mexico chapter.
One skill I have been consciously working on for this role is listening. Ask a question, listen. Ask a better question, listen. Ask an even better question, listen. I don’t know whether this is something that I am good at yet. I am getting better. I still have times when I talk too much. I try to learn from those times and go back to listening. I work on this as I reach out to communities that are different from my own. It is the best way for me to learn.
The New Mexico chapter recognizes that we must do a better job of reaching out to the Indigenous populations in our state. That is one of the challenges I am working to meet. I was very fortunate to make contact with Valerie Tsosie with the Division of Aging and Long Term Care Support in the Navajo Nation. She is passionate about her people and her work, making it easy to work together.
Valerie and I started off with conversations between the two of us. I worked on listening. Together we decided to start with a virtual community forum where we would ask questions like “What is the difference between Alzheimer’s and dementia?” and “Where do you go for a loved one who is having memory issues?”. We used a translator to provide the information in both English and Dine`. That conversation was recorded and played on the Navajo radio station. An estimated 8,000 people listened to that recording. Valerie and I talked some more and decided to present the Living with Alzheimer’s for Caregivers series with three presentations over three months, one for each stage – Early, Middle and Late. With the Navajo Nation being in multiple states, we invited the Alzheimer’s Association team members from Arizona and Utah to join.
The early-stage presentation had an audience of over 120 caregivers on a 4-hour Zoom call. We just finished the middle stage presentation and again had 100+ caregivers. The audience has included people in New Mexico, Arizona, Utah, several other states, and even some in Europe. We will complete the series in October. The response has been outstanding. People are calling Valerie’s office, calling the Alzheimer’s Helpline (800-272-3900), asking for materials to be mailed to them, and asking great questions during the presentations. Valerie and I continue to talk. She will be helping with a presentation on Understanding Alzheimer’s and Dementia for NICOA. We talk about establishing a Navajo-specific support group. We discuss other ways we can support caregivers. We have invited the audience to join us at the New Mexico Caregivers conference on November 6. We are pleased and know there is more work to be done. We are ready.
The Alzheimer’s Association continues to seek ways to partner with Indigenous Communities in New Mexico and other parts of the United States.
50 Hour Respite Care Grants Available for Families of those with Memory Issues – Apply Now!
IA2 in partnership with HFC (formerly Hilarity for Charity) is able to offer respite grants for American Indian and Alaska Native unpaid caregivers and family members, with funding from the CDC Foundation. The grant ends November 30th, so help your neighbors and clients apply TODAY.
About the respite care grants for people living with dementia or worsening memory issues. IA2 & HFC can fund 25 “Recharge Respite Grants” of $1250 each (50 hours) for American Indian and Alaska Native families. These grants do not require a formal diagnosis of dementia or Alzheimer’s rather a personal statement confirming dementia-like symptoms or worsening memory issues. Families must live in a Home Instead service area or have a local provider who can come in to provide in-home relief services. To learn more or to apply for the Respite Care Grants click here.
Supporting Family Caregivers of People with Dementia and a History of Trauma
Elders with dementia and a history of trauma often feel anxious, scared, and confused. Such feelings, along with trouble communicating can result in agitation or uncontrollable anger, creating unique challenges for family caregivers.
As noted in a recent webinar hosted by The Jewish Federations of North America (JFNA) Center on Aging and Trauma, caregivers may be better able to address those challenges by:
- Communicating in ways that help elders feel safe, supported, and validated
- Responding to the emotion behind an elder’s words, rather than the reliability of what is said
- Structuring time around meaningful experiences that build positive emotional memories
For more information and resources about caregiving visit the IA2 caregiving site here.
Featured Resources & News
Healthy Brain Website Talking Circle 11/2/21 – Participate for your chance to win a Walmart gift card!
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