By Simon Spichak, MSc | April 15, 2022
Ka`imi A. Sinclair talks about the challenges of educating Native Americans about cognitive health and engaging Native communities in Alzheimer’s disease and dementia research.
This article is part of the series Diversity and dementiaproduced by Being Patient with support from Eisai.
Ka`imi A. Sinclair is Associate Professor and Associate Director of Indigenous Health Partnerships at the University of Washington, and a leader in patient advocacy, education, and awareness of health issues such as as diabetes, Alzheimer’s disease and other forms of dementia, especially among Native Americans.
Originally from Florida, Sinclair is Western Cherokee. She earned a bachelor’s degree in community health from the University of New Mexico and a master’s degree in public health.
“I wanted to get a PhD in health behavior and health education to create interventions that would motivate and encourage people [to improve their health and wellbeing]she told Being Patient. But during her studies in New Mexico, she developed a more specific interest: “During my undergraduate studies and my master’s degree in public health, I became interested in the influence of culture on health. and disease, beliefs and behaviors.
For more than two decades, Sinclair has worked on community education initiatives, in roles including Co-Director of Partnerships at the Institute of Research and Education for the Advancement of Community Health (IREACH) and Co-Director of the outreach, recruitment, and engagement core at the Alzheimer’s Resource Center. She has helped establish prevention programs for different indigenous and marginalized groups in the United States, including American Indians, Alaska Natives, Native Hawaiians, Pacific Islanders, Blacks and Latinos. -Americans. His work originally focused on diabetes and hypertension, which are overrepresented in many of these marginalized groups. She now conducts her research in the context of Alzheimer’s disease and dementia.
“After settler colonialism, American Indians and Alaska Natives did not live to the age where they [would have] developed these diseases,” Sinclair said. “American Indian lifespans were reduced due to Western diseases brought to the Americas by Europeans and federal policies that encouraged and supported Native genocide, harsh living conditions, and little or no opportunity for benefit from a white patriarchal capitalist system”.
But recent improvements in medical care and quality of life for American Indians have increased their life expectancy. Today, many communities are living through the complexities of Alzheimer’s disease – with little information about what it is and few resources to diagnose and navigate it.
Dementia in Indigenous Communities
In Indigenous communities, for the most part, Alzheimer’s symptoms are considered part of normal aging, Sinclair said. Many people are unaware that there are feasible interventions to prevent or delay its onset.
In other cases, the experience of Alzheimer’s disease itself may differ within these communities. Sinclair told Being Patient about another colleague who has led focus groups with Alaska Native caregivers. Hallucinations can be a symptom of Alzheimer’s disease and other forms of dementia, Sinclair explained, and in some cases people who have experienced this symptom would interpret their hallucinations as visions of their ancestors. Meanwhile, the caregivers believed that the ancestors could welcome the person into the next life. These interpretations are culture-specific, Sinclair explained. Providing people with more scientific information about the disease and its effects on the brain can help encourage people to seek appropriate medical treatment, treat symptoms, and prolong and improve their quality of life.
“I do focus groups and poll people to find out what they know, what they don’t know, what they want to know about it,” Sinclair said of the disease. Alzheimers. She is then able to adapt existing material to indigenous groups in a culturally competent way – speaking with communities on their own terms.
Learning from these experiences helps inform other scientists and community members who are focused on educating communities and empowering them to participate in clinical trials.
Culturally Competent Communication and Education
Navigating within a different culture can be confusing and lead to misinterpretation issues that erode trust between physicians or researchers and the members of a community they are trying to help. Sinclair said one of the challenges is learning to adapt your language with culturally appropriate analogies.
“You have to figure out how to talk to people, how to provide education and advice,” Sinclair said. “Many Indigenous cultures use stories to teach and learn things, so we use stories in our research and in our educational interventions.
Register Native Americans to search
There’s also a huge challenge in involving Native Americans in research, Sinclair said. Since the majority of medical research has focused heavily on white Caucasians, much less is known about Alzheimer’s disease and its genetic risk factors among American Indians.
A recent study of a small sample of American Indians found that ApoE4, the greatest genetic risk factor for Alzheimer’s disease in white populations, did not affect the risk of developing the disease at all in American Indians. “We have no idea what that really means,” Sinclair said.
To better understand the disease among American Indians, researchers must make concerted efforts to build trust within these communities so that members feel comfortable participating. That’s why Sinclair studies the factors that make participation more likely.
To have a better chance of recruiting these participants, Sinclair found that the studies would need “an Indigenous researcher and people from the community involved in recruiting and implementing the project.”
Before providing education or attempting to enroll members in trials, Sinclair and others in the field use focus groups to gauge the level of knowledge within the community and understand their concerns. This helps build trust and informs researchers about the needs of the community, and also makes it more likely that they will be able to successfully recruit participants for clinical trials.
Additionally, many people still have to travel hours to get to a research trial site. “Without compensation for their travel or accommodations or for their participation in your study, this acts as a barrier to people’s participation,” Sinclair said.
Since many of these communities are rural, another challenge is the lack of trained healthcare providers who can assess brain health and spot early signs of cognitive impairment. If a patient doesn’t know there’s a problem, they’re unlikely to participate in a cognitive health research study, Sinclair said.
“There is an effort from the Dementia Action Collaborative here in Washington [State] tell people to get tested [for Alzheimer’s and other cognitive health issues]“said Sinclair. Once screened and diagnosed, they can contribute to studies aimed at better understanding, preventing and treating the disease, she added.
“Relationships are everything in the work we do,” Sinclair said, adding that they “play a major role in getting people involved in research.” She noted that Indigenous and other marginalized communities or communities of color need to be assured that “you’re not just there to enroll them in a research study and get off the ground.”
At a recent event titled “In a Circle with Our Knowledge Keepers,” Sinclair and other researchers invited Indigenous elders from different tribal nations to learn about Alzheimer’s disease, dementia, and participation in research. The event organizers provided information on the various risk factors for Alzheimer’s disease and dementia, such as body mass index and hypertension. Additionally, attendees at the event were asked if they would be willing to provide saliva samples, samples that will help estimate the prevalence of genetic biomarkers of Alzheimer’s disease in Indigenous populations.
“Over 70% of American Indians currently reside in urban areas, so there is a diaspora of Native Americans across the United States,” Sinclair said. A grant called Natives Engaged in Alzheimer’s Research (NEAR) is funding this event and others across the country. Sinclair and other researchers will hold these events at six sites across the country each year for the next five years to reach seniors living in urban areas.
After the study ends, keep communities engaged
Encouraging community members to travel and participate in research helps the scientific community better understand race as a factor in Alzheimer’s disease. But what does this do for the participants themselves? Sinclair explained the importance of communicating the results of these research studies to the communities concerned.
Satellite centers that hold annual outreach events with Indigenous elders, in collaboration with other researchers under the NEAR grant, prepare reports for the tribes to ensure that all findings reach affected communities.
Going forward, Sinclair is seeking funding to create a series of educational videos tailored to Indigenous audiences to promote participation in Alzheimer’s disease research.
“I always remember someone saying, ‘If you don’t get a seat at the table, you could be the meal,'” Sinclair said. She believes that creating media that truly speaks to her audience, language and cultural beliefs is key to enrolling more participants in clinical trials and improving health outcomes for Native Americans.