By Dan Ninham
The International Indigenous Dementia Research Network (IIDRN) held its second annual conference in Honolulu, Hawaii, in October 2024, focusing on improving dementia outcomes and achieving health equity in Indigenous communities. The conference gathered researchers, students, community members, and policymakers committed to researching Alzheimer’s disease, dementia, and healthy aging among Indigenous peoples.
Dr. Kristen Jacklin, director of the Memory Keepers Medical Discovery Team and professor at the University of Minnesota Medical School, Duluth Campus, attended the conference with her team. The Memory Keepers share IIDRN’s goal of enhancing understanding of how Indigenous peoples experience dementia and seek to improve dementia outcomes in Indigenous and rural communities through collaborative research.
Rick Smith, a member of the Red Cliff Band of Lake Superior Ojibwe and Elder in Residence for the Memory Keepers Medical Discovery Team, also participated in the conference. Smith is dedicated to building trust in medicine and research within Indigenous communities.
“As the Elder in Residence, I chair the Elders Advisory Council and we are the conduit to the tribal communities in Minnesota,” said Smith. “We help guide the researchers in their efforts to conduct safe, respectful, culturally appropriate and ethical research.”
“On the panel I served on, I spoke about the process of recruiting and organizing an elder’s community advisory committee to help us recruit staff from the community to help with connections with perspective interviewees and their caregivers. We educate the staff in cultural humility to insure they are respectful and culturally appropriate in their efforts to help our people.”
Antonio Paniagua Guzman, a postdoctoral associate for the Memory Keepers Medical Discovery Team, presented on “Four Considerations for Implementation Science in Indigenous Dementia Research.” The presentation aimed to help researchers working with Indigenous communities create successful, impactful, and culturally safe projects.
Karen Pitawanakwat from Manitoulin Island, Ontario, Canada, and Collette Pederson, a member of the Grand Portage Band of Ojibwe, presented on the ICARE (Indigenous Cultural Understandings of Alzheimer’s Disease and Related Dementias – Research and Engagement) Project at the International Indigenous Dementia Research Network conference.
The ICARE project partners with Red Lake Nation, Grand Portage, Oneida Nation (Wisconsin), and seven First Nations on Manitoulin Island to better understand the lived experiences of Alzheimer’s Disease and Related Dementias (ADRD) across diverse cultural and geographic areas.
The project seeks to gather perspectives from caregivers, family members, healthcare providers, people living with dementia, and Traditional Knowledge Keepers/Carriers to improve understanding of ADRD within Indigenous communities.
“So far, we have conducted 152 interviews across these four sites, with various groups including caregivers, healthcare providers, and Traditional Knowledge Keepers,” said Dana Kelchier, PhD, MPH, Senior Research Associate, Memory Keepers Medical Discovery Team – Health Equity, University of Minnesota Medical School, Duluth Campus who also spoke for Dr. Jacklin. “We have given community presentations and reports back to community to help disseminate results and updates, and we work closely with the local Community Advisory Group members to see what they think the community wants or needs out of this research.”
Dr. Ketcher also addressed another presentation that happened at the conference. She said, “Karen Pitawanakwat presented a talk titled, Perspectives on aging, dementia, and the good life among Traditional Knowledge Keepers in the Great Lakes Region in USA and Canada.”
“For this talk, Karen worked closely with Memory Keepers qualitative data analyst Josyaah Budreau, Nagaajiqanaang / Fond du Lac Band of Lake Superior Chippewa, and senior researcher Dr. Melissa Blind, Ka-nĕwo-kaskwatĕw / George Gordan First Nation,” Dr. Ketcher said. “For the ICARE project, 19 Traditional Knowledge Keepers (TKKs) were asked to share their understandings and teachings on living a good life, aging, and dementia. TKKs shared their knowledge on how to live on the intended life path and how to age in a good way.”
“Our newest faculty member, Dr. Cliff Whetung, Curve Lake First Nation, Ontario, Canada, not only presented his own research titled, Perceived discrimination, allostatic load, and cognition among Indigenous older adults: What are biomarkers telling us?, but also co-presented with Dr. Lauren W. Yowelunh McLester-Davis the closing plenary titled, Carving our path forward: Opportunities for Indigenous leadership in dementia research, prevention and policy,” said Dr. Ketcher.
“This was a great opportunity to hear from our newest faculty member about his innovative research,” said Dr. Ketcher. “Dr. Whetung’s research study tested the relationship between perceived discrimination experiences, a cumulative measure of physical stress, and cognition among Indigenous older adults over eight years.”
“While risk factors associated with impaired cognition in later life were associated with more physiological stress, this stress was not subsequently associated with cognition. This finding raises important questions about the quality of physiological stress measures. The closing plenary was a rousing talk about the importance and areas of opportunity for Indigenous leaders and researchers,” added Dr. Ketcher.
Cliff Whetung, Mississauga Ojibwe from Curve Lake First Nation in Ontario, Canada, is an assistant professor with the Memory Keepers Medical Discovery Team. “I first became aware of the organization while researching a project early in my PhD training and then got connected directly to the team after presenting my work at a conference, the Gerontological Society of America, in 2022,” said Dr. Cliff Whetung. “I started as faculty with the team in July of this year.”
“My presentation was focused on a concept called ‘allostatic load’ and how it relates to cognitive health among Indigenous older adults,” said Dr. Whetung. “In research we use the concept of allostatic load to measure how stressful experiences in life, like people treating you as though you are not smart, or being unfairly fired from your job, change your physical health.”
“Some theories suggest that when we have higher levels of allostatic load, which accumulates because we are experiencing more stress than we can handle, we are also more likely to develop cognitive health issues, like dementia, as we age,” added Dr. Whetung.
“What I found in this study was that Indigenous older adults who participated in a national survey called the Health and Retirement Study did have higher levels of allostatic load than White older adults, but that this particular measure of stress was not directly related to their cognitive health as they aged,” said Dr. Whetung.
“One important finding from this study, which I am preparing now for publication, that I think is relevant for all our communities is that despite this specific measure of physical stress not being associated with cognitive health, the Indigenous participants in this study who were engaged with their families, helped loved ones often, volunteered with community organizations, and stayed physically active, had both lower allostatic loads and better cognitive health than those who were more isolated and less active,” added Dr. Whetung.
“This suggests to me that the more we can do as to help our Elders and all community members connected and active, the more we will be doing to help manage our stress and keep our minds healthy for as long as possible,” said Dr, Whetung.
To learn more, see their website at: https://med.umn.edu/memory.
