It's estimated that around seven million Americans have Alzheimer's disease, a number that's expected to double by 2060.

But researchers have found that some of the highest rates of cognitive impairment and dementia exist in a population that's long been one of the most difficult to study Native Americans.

Stephanie Sai recently traveled to Seattle to understand why.

And so this is this is a a full size brain.

Inside this laboratory at UW Medicine in Seattle, scientists study brains hands on, both healthy and diseased.

And so in Alzheimer's disease Yeah.

The brain atrophies, it starts to shrink.

Dr.

Dirk Keene leads the lab where more than four thousand human brains are preserved for science.

So this person may have Alzheimer's disease, they may have Lewy body disease, they may have some some tiny little strokes that we call micro infarcts, all contributing to their dementia.

Alzheimer's disease is marked by abnormal protein deposits in the brain.

This lab houses one of the nation's leading Alzheimer's projects.

You look at in the microscope, it's so cool, right?

You can't do it.

The goal to analyze brain tissue in hopes of unlocking new treatments and cures for the disease that is the leading cause of dementia among older adults.

The greatest gift you can give to science, I think, is your brain.

It's really the gift that keeps on giving.

The brain bank depends on brain donations, some of which have been stored and studied for more than forty years.

But there is a key gap among the thousands of brains in the repository, less than five have been donated from Native Americans.

So the fact that we don't have very many Native American donor brains makes it a lot more difficult for us to understand what's happening before they die.

Native Americans have some of the highest risk factors for developing Alzheimer's.

A 2024 NIH study found that fifty four percent of older American Indians now have some degree of cognitive impairment, a significantly higher rate compared to the general population.

Cognitive impairment can be a precursor to dementia, including Alzheimer's disease.

There are a number of things that can lead to memory impairment besides Alzheimer's disease that are also prevalent in in those communities.

Doctor Thomas Grobowski directs the University of Washington's Alzheimer's Disease Research Center.

There's a high rate of cerebrovascular disease and diabetes, then there's higher rates of post traumatic stress disorder, there's higher rates of alcoholism, there's higher is surprisingly high rates of traumatic brain injury.

And all these factor in.

Why hasn't there been more research around this particular commu community which has comorbidities for cognitive decline and Alzheimer's as well?

It's a community or it's a collection of communities which are particularly wary, I would say, of some of the institutionalized scientific process in the United States.

And so building trust with the communities is harder and slower.

It's a long process.

That process began nearly three years ago for 76-year-old Linda Holt, a Native American and former health director of the Susquamish tribe.

Once a year, she makes a nearly two hour trip that includes an early morning ferry ride from her home in Bremerton, Washington to a UW hospital in downtown Seattle.

You a list of words if you could tell me all of the words you remember from that list.

Face, velvet, church, children.

Daisy Red parachute.

She's enrolled in ongoing research now being conducted as part of a decades long study into Alzheimer's by teams from the University of Washington and Washington State University.

Now can you please tell me the name of this animal?

Lion, this one rhinoceros camel.

She signed up for the study.

Despite her own reservations.

Native Americans are very hesitant about volunteering for these types of things.

And that's comes historically from studies that were involuntarily done on Native American people.

Across the country, thirty two thousand Americans participate in Alzheimer's research, but less than two hundred and fifty participants identify as either American Indian or Alaskan Native.

The Seattle program is actively trying to recruit Native Americans and already has nearly forty participants with the goal of enrolling one hundred in the next few years.

So by twenty fifty we're gonna have eight times the number of eighty five year olds in tribal communities and so Cole Aleck is an assistant professor at Washington State University who grew up in North Dakota as part of the Turtle Mountain Chippewa tribe.

Where are ya?

Smile's worth it.

He says the program uses fellow Native Americans to not only help recruit participants like Holton to the study, but to guide them throughout the research process.

I would never do this by myself.

If my mom or my siblings or my grandparents were ever to go to an appointment growing up, there was always someone with them.

It's kind of I think a bonding that is done between natives.

That's like, oh where you from?

You know?

What's it like on the reservation where you grew up?

And sharing that kind of of information and getting to know that person has a big impact.

While Holt isn't showing any signs of dementia or cognitive impairment, she says she's become an advocate for this research within her community.

How this disease impacts families just really interested me as far as coming up with ways to prevent it, ways to help stop it once it develops, ways to cure it.

Face The Church Daisy Reddit.

Sixty seven year old Eric Perot also signed up for the study.

His Native American heritage can be traced back to his mom, who he says began showing signs of cognitive decline near the end of her life.

I saw my mom decline, and that was very difficult.

A grant from the NIH funds this research, but earlier this year, as part of a larger effort by the Trump administration to slash federal spending, the program's funding was delayed.

A few months later, their grant was renewed.

Well, I'm glad that the research is managing to continue despite all of the anti science sentiment that is in this country.

You might be asked at some point whether you are interested in, you know, ultimately letting us look at the brain.

While steady progress is being made, several hurdles still remain, especially when it comes to brain donation.

I have cultural issues with that.

When you leave this world you have to have your whole body.

Yeah.

To go.

So we devoted a lot of the last five years to just understanding how to transact a really research relationship with participants like the ones that we interviewed today.

What sorts of things are culturally acceptable to them?

What sorts of ways can we reconcile how we do scientifically integral work with their This person has lost a huge amount of their brain mass because of Alzheimer's disease.

Back at the Brain Bank, Dr.

Keene says only actual brains can reveal the kind of ground truth needed to develop targeted treatments and preventions.

Native Americans will have specific differences in what causes dementia, how susceptible they are to certain things, what drugs might work better or worse.

We can only really know that once we've been able to study the brain tissue from those folks.

And that's true for any community.

But researchers say the contributions Linda Holt has already made may be crucial for healing the next generation.

For the PBS News Hour, I'm Stephanie Sai in Seattle.