With those announcements made I would like to welcome everyone to today's webinar.
Today's webinar is titled, "Native American and Research Communities Uniting to Fight
Alzheimer's Disease."
Our presenters today are Dr. Carrie Gleason and Wesley Martin.
Dr. Carrie Gleason is a researcher and clinician whose work focuses on early identification
of and intervention for memory disorders in under-served communities.
She is interested in identifying modifiable risk factors for Alzheimer's disease in
African-American and Native American groups traditionally under-represented in research.
She is the principle or co-investigator on numerous research projects examining these
risk factors.
Findings from her research projects have resulted in more than 50 scholarly articles and four
book chapters.
Additionally, she serves as co-leader of the Minority Recruitment Satellite Program of
the Wisconsin's Alzheimer's Disease Research Center and Neuro of the Neuropsychology Service.
Wesley Martin is an advocate for Alzheimer's disease research in partnership with Native
American communities.
He's a former law practitioner in Keshena, Wisconsin bringing his experience in law to
help small business owners and knowledge of federal, state, and Bureau of Indian Affairs
programs to inform community programming.
Although enrolled at Oneida, Mr. Martin is of Menominee and Chippewa heritage, as well,
and has seen firsthand the immense value in intertribal and tribal/nontribal partnerships.
He is prized for his knowledge of tribal program development, policy, and procedure in grant
writing.
His special interests include economic development, indigenous herbal and medicinal knowledge,
and social programs on Native American reservations.
As a veteran, Mr. Martin is also proud to contribute to veteran focused support programming
in Indian Country.
I would like to thank these two presenters for giving their time to share their knowledge
with us and Carrie; I'll turn it over to you to provide any directions to today's
topic.
Okay.
All right.
Thank you, Julie.
I want to thank you also for the option or the invitation to present today.
It's a real honor to tell you about our journey and how we grow as a collaboration
in our two programs.
So, I will go ahead and we'll start with this slide to describe sort of our journey
in this process.
There were some key players, of course.
I'll tell you about from the Wisconsin Alzheimer's Disease Research Center, we have some key
players who were active in this process.
This wouldn't have happened without their help.
You know, I'll let my partner here, Mr. Martin, describe some of the key players at
the Oneida Nation.
Thank you, Carrie.
Um, first I want to mention on that introduction.
Boy, I didn't even know who I was, but it sounded good.
(Laughter.)
Uh, yeah, the *** (unclear - 3:10) when we started it, what happened was a number of
the ONCOA Board and Oneida members were interested in going down to the Alzheimer's Association
Museum in Wisconsin Dells.
And one of the ONCOA members at that time noted Mike Hill as a member that there was
no information on Native Americans and a voice that concerned who the people that Alzheimer's
Association meeting and eventually when they did, uh, they did try to reach out then to
some, and that's when we ran...at that meeting following that, I believe it was a year later
or so, we actually ran into Carrie and Dorothy and they were telling us about what their
project was.
We invited them to Oneida.
We also invited them to participate in a national conference in Arizona by the Banner Group
and which they heard and we again continue our dialogue with them and we'll give you
a *** (unclear - 4:24) from there and then maybe we'll be talking about that presentation
at Oneida at a date later.
So, I will turn it back to Carrie.
Yes.
All right, so when we started our conversation between the two organizations, it didn't
take long before we realized that there were many misunderstandings on both sides of this
conversation.
So, Wes described to me some of the narratives in Indian Country around dementia.
Would you like to elaborate, please?
Well, you know, one and at the, um, so-called most of the reservations, I've been Indian
most of my life, except for times in the service and living in other parts, I still feel my
connection with all the reservations, so as a country and we used to refer to Alzheimer's
as Old-Timers and when I see this word dementia that actually was when we talked about it
was actually a foreign word to me.
I knew of dementia, but never, you know, associated with Alzheimer's and things like that and
so our conversation with Dorothy and Carrie acknowledging that Alzheimer's was a form
of dementia and I think 62 other forms of dementia.
So, that's been in our conversations and Carrie used to be, "Just what does dementia
mean and how can we get that information to the reservation people here in Keshena?"
Okay, yeah and so Carrie and Dorothy came up.
They were invited to come up to Oneida.
They visited the meal site and there was some...
We opened it up to the public to come there and we talked about Alzheimer's and it was
a turn out that Dorothy made the comment after it that using *** (unclear - 6:34) presentation,
it usually went 15 to a half an hour.
That session at Anna John, at the meal site, lasted pretty close, almost 3 hours and the
discussions that were and questions and all that was those of concern about it and one
of the things I learned that day and it was really to me a question I had and had been
bothering me, um, when I used to...
I thought I was losing my memory from crazy.
With a simple question, I couldn't remember people's names.
I knew them.
I would look at them.
I knew I knew them, but I couldn't remember their names.
And eventually I did get their names.
But that was a concern.
I thought I was losing it.
So, when Dorothy and them came and they were talking...and I mentioned it to them about
my concerns and they said, "You know what?"
She says, "That's just a process of growing old."
And that answer was a big relief to me, because I thought I was forgetting little minor things.
I would say I'm going to do something; I'd forget to do it and remember it later and
I was talking with Dorothy and them.
So, it's really got my interest and I thought about it.
Later on, I was telling Carrie and Dorothy, you know, "If this is...
I had a concern about it, how many other people in Indian Country have the same concern?"
And I was scared because I didn't want to tell anybody about it.
I didn't want to tell anybody I thought I was losing it, with thinking that they'll
think I'm going crazy or whatever.
So, once I learned that I said, "We need to get this out in Indian Country, because
if that's the way I'm feeling, how many other Native people out there," because
there was some questions not only added at that meal site that day, but they felt that
there were questions about their parents, other members, friends, you know, how they
were reacting to things, especially the elders, their parents, you know.
And one of them was like, "I think she has...
You know, my mom will ask me a question and 10 or 15 minutes later she asks me the same
question."
And Dorothy and them address that and they...
So, that is...
You know, I thought of...and I said, "We've got to get this out in Indian Country.
We've been developing, trying to reach out to the other...uh, all the 11 tribes in Wisconsin
and go to the various Native programs, because then they link Native American...
Uh, they linked Native American programs to commissioners on aging directors and the clinic
directors in Wisconsin."
And there's been a great, I guess, acknowledgment that they want this to go forward and they're
interested in hosting it.
So, I will then turn it back to Carrie as we go through this slide presentation.
Well, there was...
It was pretty clear early on that there was a great deal of interest in learning more
about Alzheimer's disease in the Oneida community.
Um, and as Mr. Martin describes, there was some questions that were perhaps held close
for fear of what people would find out.
"Am I losing my mind?" for example.
And also, just the ability to reach caregivers, um, those people caring for older adults who
have dementia, but the tools that are needed to care for that person weren't available,
again, in part because not knowing when to ask for help or what type of help to ask for.
So, um, one of the things as I began to talk to my community...
So, in the research community, I realized that there were many myths in that community,
as well.
So, and maybe, some of you who work in medical fields hear this as well and these actually...
And these are *** (unclear - 11:05,) are not true, but these are things that I heard when
I began to talk to colleagues about outreach to the Native American community around Alzheimer's
disease.
I was told that Native Americans wouldn't...that they don't live long enough to develop dementia.
I'll show you some data later on that shows that's not true; that Native Americans are
in fact at increases for dementia compared to Caucasians and that I was also told that
most dementia in Native Americans in Indian Country are dementia or excuse me, alcohol-related.
Again, not true.
And, that I was also told that Native Americans will not participate in research, so that
it's an impossible task to recruit Native Americans into research and again, we're
finding this to be a myth as well.
So again, in these very beginning conversations it became pretty clear early on, that both
sides really were hungry for or interested in and willing to invest in order to answer
some quick few questions.
As Mr. Martin mentioned, one of the very first questions that sparked this was the question
of, "Where's the research on dementia in Native Americans?"
And the simple answer is that there were small pockets here and there.
There has been people who have been doing this, but there wasn't a whole lot of large-scale
approaches to understand how dementia affects Native Americans.
So, we fairly quickly recognized the need for more work in this area.
So, I am part of an Alzheimer's Disease Research Center.
These are...
I'm part of the Wisconsin Alzheimer's Disease Research Center.
These centers are located throughout the country.
There's a total of 32 centers and they're always at universities or institutions that
have a strong academic background and they're funded by the National Institutes of Health.
So, these are federal organizations, highly competitive to get one of these centers and
each center is supposed to contribute unique information to solve the influence of the...solve
the effects of Alzheimer's disease on families and patients.
So, as part of our center work, we send data to a national center in the state of Washington.
And that national center is called the National Alzheimer's Disease Coordinating Center
and the National Alzheimer's Disease Coordinating Center or NACC, um, pulled together those
data and the goal of doing this is that we can feed the process of developing treatment
and prevention.
We can provide education to communities.
We can feed the research process, help investigators to recruit and retain individuals in research
study, and we can provide outreach to groups under-represented in research.
The goal for this project is to develop a representative sample so that we are including
people who are affected by the disease and we are representing the U.S. population in
general.
So, I just want to give you some...
So, I have a poll question here.
So, our current NACC enrollment, um, we are at over 35,000.
That's individuals that are enrolled in that NACC data set and I'd like you to just
think...
I'm going to set this up by telling you that the newest population is approximately
7% African-American and...or excuse me, 12% African-American and the NACC enrollment for
African-Americans is at about 13%.
Again, NACC's goal is to make special efforts into groups under-represented in the research.
So again, 12% of the population is African-American; 13% enrollment in NACC.
Um, the Native American population in the U.S. identifies just under 2%, um, that self-identifies
Native American.
So, I'd like you to go ahead and guess the number of individuals of 35,000 who are currently
enrolled in the NACC.
So, it looks like people are filling out the question, the poll right now.
So we'll give it a little time.
(Pause.)
So Julie, I'll let you decide when we should end the poll here.
Okay.
We'll just give it a few more seconds.
It looks like the majority of folks, um, signed on today have already given a response.
So, just a couple more seconds.
Carrie, you can go ahead and move on.
Do I just press the advanced button to move forward then?
Yes.
Okay.
Okay.
So 23 of you responded "fewer than 200 people" and you would be right.
Unfortunately, if you look at the actual numbers...
Oops.
Okay, so our actual numbers of the individuals who self-identify, as I mentioned, we've
recruited, um, 13% of the population identifies as black and we're at about...we're really
at close to 12.5%.
We're about that.
So, we're doing really well with our recruitment for African-Americans; however, if you look
at our recruitment for the Native population, fewer than 200 individuals.
That's .06% of the NACC enrollment is Native American.
So, it was something that looking at these data I recognized as a community, a member
of the research community, I realized that we were not doing a good enough job in terms
of our enrollment for Native Americans.
And you'll see why in a few slides, why this becomes really important.
So here...
This is...
Um, I'll turn this back to Wes as we talk about...
Wes just touched on this briefly.
When we, um...
We came to Oneida to the meal place and we gave a presentation and this is what you were
talking about, Wes, when we were there in May of 2015 and we gave a talk and it was
amazing, the reception, again, was...
We were easily there for three hours answering questions and hearing comments from the audience.
Would you like to add anything?
And the other thing that came out of that was, and I think that already had been talked
about was, Marlene Summers and *** (unclear - 18:21) started getting into what they felt
a project at DWM here on testing and good work there and there's a number of them
now that are participating in that and there was also another one, Music and Memory and
they start doing that and then through that whole project Carrie came up.
We met with the people from the clinic, uh, the ONCOA, uh, Lois Strong and that group
and continue to work with the elder or Commission on Aging and we were able to eventually bring
up staff from DWM and they did this—I forget the number of that test that they ran—and
it basically gave you a showing.
I took the test with my own concerns and they gave you a score and based upon that score,
if you were able to determine from this test if you have onset of dementia, if you didn't,
things like that and it was really good because, you know, it gives you some...
But, it started that process to do it and I'm talking is also the...it's time to
get the cultural part of it.
Part of this fit into the cultural part of it and my association in Indian Country and
being raised on the reservation, most of our older people stay in the family unit.
They are taken care of, things like that, and that to me I believe is sort of like a
cultural type of fulfillment of Native people.
And again, I mentioned that I lived in New Mexico and that is, down there, you know,
it's...that is one of their most culture basis, that they take care of their elders
and their children.
And so, my enthusiasm to continue in this project has developed and I continue that,
uh, hopefully that moves with the *** (unclear - 20:41) and other initiatives and directors
on reservations in Wisconsin and we even reached out, all right, to the population in Milwaukee.
There's a large Native population in Milwaukee that hopefully that we can also continue to
work with and in the other urban populations.
So, it's getting the things out.
It's getting and answering questions and basically trying to tell people what dementia
is about.
There has been a great enthusiasm on the reservation and the reservation programs, the clinic directors,
other directors.
So, hopefully that this continues and working with Carrie, that's our goal that we hope
is...
And I should ment...
And also the *** (unclear - 21:35,) the Native American Elders Association and we looked
at those the day before our meetings which we have every three months.
We have a task force meeting of different projects that we're working on, elder abuse,
and this has been put in dementia, has put in as part of that task force and we'll
continue to bring this information forward to that elder of the Native program.
Carrie, back to you.
Yes.
So, this is the...
So, Wes was describing how we started our connection locally.
We met again in Arizona, Scottsdale, Arizona at a...
It was the Inaugural National Conference on Alzheimer's Disease in Native American Communities.
And so, I went truly as a participant just to listen and Wes was there with several key
members from Oneida and there were many representatives from Wisconsin tribes and it was an opportunity
to sort of see what's happening on the national level that conversations...
Again, this was the inaugural national conference and that was in 2015.
So, you can see that even on the national level, these conversations are really just
in the beginning stages and the momentum is continuing, but it's still, and just depending
on where you are, how advanced different organizations are, but there are many people now working
on these...on this topic.
And our hope is to be part of this conversation and to contribute our voices to the national
conversation.
So as Wes mentioned, we have the screening events.
When we came back from Arizona, one of the first things we did was we met with ONCOA.
Wes now is the former chair of the ONCOA board, but on this reservation and we asked them,
"What would you like us to do?"
And the sort of unanimous vote was for a memory screening event and I work closely with their
representative.
So, Lois Strong was incredibly helpful; Marlene Summers, other board members, uh, Debbie Miller,
their domestic care specialist, all were key players in helping us pull together a really
successful event where we were able to go and offer the community some kind of answers.
So basically, so you're not feeling like you're going this alone or that you don't
understand what's happening in terms of aging, whether this is normal aging or an
early part of a memory problem.
We were able to go and make appropriate referrals to people who needed the evaluations and actually
for some people and it allayed their concerns about any prevalence changes they may have
noticed.
And we held that screening event in April.
I'm going to shift gears a bit to talk about why the national focus on this group.
As I mentioned early on, when I first started this conversation in talking with Native American
groups here in Wisconsin, some of my fellow or some of my colleagues told me, "Well,
why would you pursue this because Native Americans don't live long enough to get dementia?"
Well, as it turns out Native Americans...
There are some recent data from 2016 from two different groups that looked at the prevalence
of dementia in various ethnic and racial groups.
So, if you looked at...the green bars are...
The dark green bars are African-Americans.
The light green bars are Native Americans.
Whites are the light blue bar and the darkest bar here, the dark blue bar is Asian American.
So, if we look at Asian Americans in this case for late onset dementia, this is dementia
after the age of 65, the group that has the lowest prevalence, um, or incidents rate,
excuse me, are Asian Americans.
So, compared to Asian Americans, the group at elevated risk are white in some age groups,
but in general it goes back and forth, Native Americans and African Americans are the group
at greatest risk for late onset dementia.
Again, this is dementia occurring after the age of 65.
So overall, the overall list is still greater for African-Americans, but Native Americans,
as you can see, are a close second in many age groups.
Then, if we consider dementia for individuals younger than the age of 65, if we look at,
again, racial and ethnic groups, um, if you look at Caucasians, in this case, are the
comparison group.
So, Caucasians represent that blue vertical line and if the horizontal line represents
four different racial or ethnic groups, and so, the horizontal line crosses the vertical
line there's no statistical difference between the groups in terms of their overall odd ratio
or their overall risk.
So, just by looking at this, you can quickly see that there are two groups whose risk is
elevated, statistically elevated and those groups are African-Americans who are about
1.5, 1.6 compared to Caucasians and Native Americans who are...look to be about twice
the risk for whites.
Again, for young onset or early-onset dementia.
Again, before the age of 65.
So, one possibility is that there is a sort of truncated life expectancy perhaps and that
Native Americans do in fact get dementia, but they're getting it younger than the
age of 65.
And again, it seems to be ethnic groups at highest risk compared to others.
I'll also just depart briefly from the conversation around Native Americans dementia and just
talk generally about, "What is dementia?"
And these are often times helpful conversations.
Forgive me if this is repetitive for those of you in the audience, but just similarly
talking about, "What is dementia?"
It's a syndrome and it's a syndrome that we can recognize and diagnose.
It's recognized by behaviors and it has diagnostic criteria.
So, the diagnostic criteria include a change in cognitive in two or more areas.
It's affecting your day-to-day life.
So, it's causing problems in your ability to manage day-to-day tasks.
It also has to be a change from your baseline.
So, if it's something that has always been a problem from when you were young, it's
not defined as a dementia.
And it can be better explained by something else like depression or a delirium (?unclear
- 29:13.)
Alzheimer's disease in contrast is one of the many causes for dementia.
It happens to be the most common cause and it's something that we can recognize pretty
characteristically in how it presents clinically.
Alzheimer's disease has a slow insidious onset.
It declines.
There's decline over time.
And it has a characteristic pattern of memory and something called executive dysfunction.
So, in a, Alzheimer's disease is one of several causes.
One of the things I would like to point out before we move on, I talk about Alzheimer's
disease sometimes and I inadvertently present it as something synonymous with dementia and
that is a mistake on my part, but it is...
Alzheimer's disease is a cause of dementia, again amongst the many different types of
causes.
It happens to be the most common cause.
If you look at it as either a single cause or in combination with some other form of
dementia, it accounts for approximately 65 to 80% of dementia depending on the estimates.
So, what...
If we look at...
Um, again, I go back to that question, "Why is this important for conversations in Indian
Country?"
Let's look at the factors increasing risk for dementia and factors that decrease your
risk for dementia and Alzheimer's disease; so, in both cases.
Um, factors that increase your risk for dementia and Alzheimer's disease dementia are age,
so the population is living longer, genetics plays a role, but then look at these next
set of factors.
Neither is...
Um, Julie mentioned early on, an interest of mine are the modifiable risk factors.
So things like diabetes, high blood pressure, high cholesterol, depression, head injury,
if we look at the prevalence of any one of those conditions in Indian Country, you will
find that Native Americans are at increased risk factors for these common risk factors
for Alzheimer's disease dementias.
If we then look at the factors that mitigate risk, um, physical exercise, education, some
possibly dietary factors, social engagement, purpose in life and these all are...provide
a sort of foothold to look at prevention efforts and these are all things that could be cultivated
or grown in Native communities.
Again, these are oftentimes a focus...already a focus in Native communities.
So, hopefully this makes sense now, why this would be of interest in terms of directing
a health equity, um, concerns.
So again, this is either, um, just a graphic of dementia in general, not just of Alzheimer's
disease—things that promote the risk for dementia and those that lower the risk.
So, things like early education, early age (?unclear - 32:28) education, social engagement,
mental activity are always...will mitigate the risk for dementia.
So, I'm going to turn it back to Wes for this next part.
As we were talking, we realized that there were so many questions that remain unanswered
when it comes to dementia in the Native American population, so.
Thank you, Carrie.
Yeah, one of the question was that I posed right off was to, you know, Native Americans
when they were basically confined to the reservation, they brought in all our boarding schools this
processed foods.
We still get them today.
We get the commods to get the other things, and so, where we had traditional food such
as game and berries, venison here in Wisconsin and yet very little of that is given, the
food that was given to us that we have to take unless we were fortunate to be able to
hunt and fish on the reservations.
But that became my *** (unclear - 33:36) cause.
That does have an effect on dementia is processed foods.
That's an unanswered question.
We hope we see our...the research that that can be answered and then the other part was
there's a push and, uh, what *** (unclear - 33:54.)
They're bringing in a project on Indigenous foods and how does that...
How does that...
Some of our old food that we used to, with the wild rice, the berries, and things like
that, how does that affect, uh, is that a cause of causing Alzheimer's or dementia?
And then, one of the products that we're tying onto that is, hopefully is, "How do
we find out about our herbal medicine that a lot of our tribal people had?"
You know, they were processed with *** (unclear - 34:29) with the bark, uh, all these type
of things that they had from the things that were grown on the reservation and how did
they come about having it and how does that affect?
And I tell the story about LCO one time that a person I was working with went up to *** (unclear
- 34:55) to start the, uh, a flight to San Diego and I said, "What are they going down
there?"
They had a whole pamphlet of medications that they could get, but they had to go across
the border into Mexico to get the medicine to be treated and these were based upon stuff
that the medications had generated are the material and it were felt from the U.S. that
they knew that we could not get them in the United States.
They had to go to Mexico and there's...
And now that's *** (unclear - 35:36) come back to me.
People go up to Canada to be treated, because they can only get the medications up there.
So, these are the things that we're talking about and one of the other programs that I
think Maureen is involved with and when we were at that workshop in Phoenix, there was
a presentation on Memory and Music.
*** (unclear - 36:03) they showed this one guy who was really comatose type of thing
or he was in the stages.
He was in a wheelchair.
He would not participate in his care giving or whatever.
Somebody accidentally put some headphones on him and they were playing music and that
music somehow stimulated that person to come out of that thing and it was unbelievable.
As soon as they took the headphones off, he went back to that same state.
But they realized that once they put it back on him he started to come alive more.
Those are something to be able to...
And so, there is now a base in Wisconsin I know the nursing home, they give headsets
and things like that on this Music and Memory.
It's my hope that the nursing homes on or near the reservations where our membership
go is to redevelop that same type of program only using traditional music or traditional
things built, you know.
So, some of these projects that we have been learning about, hopefully we can institute
and use it as part of our research and not hold a research until the end of the research
bid but to use that in that, get that information out, tell people about different programs
and projects.
And so, ours is very interested, but the most difficult problems that I see of this and
it's just not Native communities, in northern Wisconsin, upper Michigan, northern Minnesota
the lack of professional medical people is really...
It's unbelievable.
People don't...
Medical people want to stay what I call "south of 29," Highway 29, because basically that's
where the money is and that's where the majority of people.
But that elder population is going up in the northern.
People are moving up there to retire and that's where most of the Native reservations in Wisconsin
is.
So, that is one of the biggest problems up there is medical personnel.
So, hopefully that earlier research of going forward that it can be distributed at the
same time as they're going through these projects and mindful that this project is
open to anybody, any ideas, anything that we think we could use, you know, to define
if there is Alzheimer's, dementia in Indian Country.
How do we recognize?
How do we do it and is there a way that we can make it culturally sensitive to meet the
needs of the people on the reservation?
And so, there's a lot of projects.
I was telling Carrie, you know, DW has other projects that are geared toward elders that
we could help.
One of them being is elder treatment.
I know Lois and them are starting a project as to deliver that, um, iPad's to elder
members so they can compute or communicate through that process with other people of
the same interest.
And so, there is a project out there that we can...
It's one that can help us in our...in this issue with Alzheimer's.
I think you have some more slides there, Carrie?
I sure do.
Yeah.
So, yes, so Wes is bringing back the point that this is...there's such an opportunity
here to really approach this question for the research and healthcare communities in
a way that we incorporate culturally sensitive approaches, the ways that we draw from culture
as opposed to ignore it.
We can help build programs, for example, the Music and Memory that we could incorporate
Native music in a project like that.
We can incorporate Indigenous foods in meal sites.
Again, thinking this sort of as a life course issue, preventing Alzheimer's disease by
thinking it from a life course perspective.
So, I put this slide back up just as a reminder.
Every once in a while, I'll go back to the NACC's website and check on the enrollment
numbers and how we're doing in terms of our enrollment for Native Americans in the
NACC for this large coordinating centers enrollment.
Again, we have fewer than 200 individuals.
This just demonstrates our need to move forward on this.
So, as we thought about this, Wes and I have been having conversations about how to make
really thoughtful solutions and I also thank my other collaborators at Oneida and also
at *** (unclear - 41:01,) that have been really influential in terms of helping us how to
understand how to approach community-based research.
And we've approached this thinking about this from the service model and then again,
that example of going to the ONCOA board and asking, "What do you want us to do?" as
opposed to coming in with our great ideas and asking them to adapt to us.
Um, again to build this service-based model and then we asked people to participate.
So, remember one of the myths I faced for, uh, was whether or not people would participate
in research and it turns out if you address some of the barriers, compensate the travel,
this is a fairly...this is a state that requires a lot of travel.
If you come down to the university, it's located in the southern part of the state
and many tribal communities are more than an hour away.
Make sure that you're compensating for travel and then try to make the visits as comfortable
as possible, including hiring culturally competent staff.
It can approach this work with a cultural humility respect and part of what we're
doing, our work here we're going to...
We invited Wes to come a week from today.
He'll be giving a talk to our medical communities getting our Grand Rounds to talk about sort
of the influence of cultural experiences on Native American's health and their approach
to healthcare.
So, we invited Wes back for a talk in a week.
Um, we have made contact with the clinics and the elder councils and our goal is in
responding to what the community is asking for, we're hoping to approach this first
by approaching diagnostic services.
In terms of Alzheimer's disease and other forms of dementia, it's having access to
good high-quality diagnostic services is absolutely essential if you're going to move forward.
Um, and as Mr. Martin mentioned, much of that is below Highway 29.
So, our goal...
One of the first things we're going to work on is finding out what the community wants
in terms of diagnostic services.
Where do you want it located and how do you want it structured?
And again, improve access to caregiver resources.
Um, so de-stigmatizing dementia.
And if Wes, if you want to comment on this.
A big part of what we need to do is de-stigmatized dementia.
That it's not a person going crazy, but it's actually a disease that is...it's
going to affect a lot of people.
You know, like I said, the simplest question I made, although it's simple, the answer
that I got...
The feeling that I got out there was, you know, of relief that I can be *** (unclear
- 43:59.)
Because that had really bothered me and I think I will continue on with this project
that I'm sure I'm not alone in that.
But, we're finding that by making these informed discussions with people on all the
reservations and having this discussion about Alzheimer's, I see that there's a great
enthusiasm not just in Oneida, but throughout...
The women I talked with at Oneida, uh, I think I forgot, Carrie and Dorothy did come up and
do a presentation and there was a lot of questions and there was discussions with that.
So, there is a very high interest in getting some answers, because within talking with
the clinic directors, they also realized they were not doing much other than medical stuff,
nothing on dementia and what they did was very limited.
So, they're interested in that and the dementia project is great and I appreciate the Oneida
clinic.
Again, they can...and they're going to be doing the memory screening along with hopefully
other clinics in the Wisconsin, on the reservation.
So, I think there is some questions that are...
I'm not sure what they are and what time we have left?
Oh, I think, um...
Oh, I'm sorry.
We're supposed to speak a little bit louder so that we don't get our own feedback.
Oh.
So again, building trust for the research program and also building in as part of that
the service to the community.
And I think what I'll do is, I'll talk about something else that is really important
too and this is conversations that Wes has brought to our attention, is we have to think
about who owns the data.
As researchers, we often times have the minds that we go into communities.
We parachute in and we collect data and we leave without much of a thought to a give
back or to using the data to actually benefit health for the community.
And so, one of the agreements we sort of established right from the get-go is that the data actually
needs to belong to the community and that this is something that has to benefit the
community and the community needs to be involved in every aspect of the research in terms of
developing the questions to look at, as well as being, uh, benefitting from the information
that we gather.
And so, we have incorporated for our under-represented groups in particular, we are offering something
in our program called a "wraparound service," where we offer to go over very specifically
in a personalized way what the research findings are showing.
Those that are clinically directed saying that, "This is the particular graph (?unclear
- 47:00) value.
These are some recommendations we have for you."
So, we are now offering that as part of our research program.
Um, and I'll go ahead and switch to our...
This is an example of how this has paid off or I guess, how it's...what the result is.
I guess I'll put it that way.
So, our first couple of years of funding as a center, you can see we had a little bit
of passive (?unclear - 47:24) recruitment for Native Americans, but you can see with
year seven and year eight, it has just been a clear...
Without actually making a concerted effort for advertising or pushing recruitment and
we've just seen a big jump in our recruitment, excuse me, our enrollment of Native Americans.
So, it's just been a real wonderful experience in terms of this partnership, going in with
sort of a very mindful approach and really see to this with (?unclear - 48:00) partnerships
with the interest is an organic interest coming from the community, um, and in many ways I
feel sometimes we are so fortunate to have this partnership, but also just to have the
opportunity to respond to the request of the community.
I think...
How are we doing for time Julie?
Um, if you...
About five more minutes.
Okay.
All right.
So, I think my last few slides, we talked about...
Wes and I put together a project that we're hoping to get funded and if we can't get
it funded through the means that we thought, we plan to just chip away at this and actually
do what we can with the resources we have, but I'll just maybe very briefly talk about
what this supplement application is part of our center work.
We proposed...
This is a busy slide.
I apologize, but we proposed to accomplish four different aims.
The first aim was to develop an advisory board just simply to develop a group of stakeholders
who are interested in making sure to steer us, to steer the work that we're doing.
In the first year, we had proposed that it would be an Oneida based advisory board and
then in the second year, Wes feeling very strongly that this is something that's going
to affect all Native communities wanting to expand in the second year to include other
tribes who are interested in this topic as well.
Our second aim was to improve culturally appropriate dementia diagnostic services.
As I mentioned earlier, this is something without these dementia diagnostic services.
Um, it's one of the non-starters.
How do you know what you're dealing with if you don't have actively diagnostic services?
Our third aim was to look at what caregiver needs are...exist in the community, and then
our fourth aim was simply to really build a liaison with the other 10 tribes in Wisconsin.
Um, as I mentioned, in the absence of funding what we decided to do is to move forward where
we can and the easiest one for us to move forward on is the "aim two," to really
work at building accurate and appropriate, culturally appropriate diagnostic services
for the Oneida community and this is a...
Wes, I don't know if you want to talk about some of the goals here.
The long-term goal here, we think big here.
Is to bring the research...rather than to have...
The community always comes down to Madison.
What we'd like to eventually do is bring the research to the community.
Yeah.
That is...
And I think we also need to partner, you know, with Commission on Aging, elder directors
on the reservation, also the clinic directors with *** (unclear - 51:02.)
Linda Holtz who is an employee of *** (unclear - 51:07) who is really knowledgeable along
with...
Carrie had stated, we're eventually reaching out to on a national level, Cynthia LaCounte
of the Older Americans Act Director.
Uh, Dr. Finke who is also, I believe, from the Indian Health Services.
So, this is not just confined to Wisconsin.
We want to reach this out to and involve some of our participants from the reservation,
uh, Denise Palmer and I wanted to try to talk about the ages of tribal elders.
Denise always pointed out when she worked at Menominee that the average age of that
Menominee research is like 48.
You know, so...
But the effect of Alzheimer's can start at already the onset or somebody realizing
it could start at 40 and that had been...and so, that being a non-Indian community.
So, is that something that happens in any community?
But these are things we need to...but again I guess is dementia, who is involved?
We keep them informed and they're involved in it.
This is not...
This is, uh, for all of the Native people in Wisconsin.
So, hopefully this presentation will get that word out that we're trying to do this.
We're not...
We're trying to reach out to other people that we don't know about or there's someone
who knows about it that they would continue to participate in this program, but it's
going to be their program, not ours.
So, I think there's been some...there is some question and answers in the box there.
I can't read them.
Yeah.
So, we're getting some questions from various individuals.
Some have asked us, Wes to possibly come and work with their communities.
I do want to acknowledge, um, Megan Dannigan (?sp - 53:22) University of Washington is
a colleague of mine who is working on...
He's one of these folks that's working on the national level and just doing a really
beautiful job of making connections to tribal communities in Washington State and he has
really been a, sort of a leader in pulling together the individuals working at centers
throughout the country.
So, I want to acknowledge him.
Megan asked a question for you Wes, asking if you could elaborate on how you think caregiving
experiences might be different in Native populations compared to the Missouri population of white
America.
Um, I will do this...
I got a...
And I'm going to use my daughter as an example in New Mexico, because I'm an elder and
they have traditionally is everything that when the grandparents they will turn their...those
grandparents...
They will turn everything to the ownership to the eldest daughter and it's the youngest
daughter's responsibility that she has to take care of them elders, her relatives until
such time that they might go on to the spirit world.
As her father, she has told me that it is her responsibility at times that I cannot
take care of myself that she...it's her traditionally that she has to take care of
me and her mother and things like that.
So, and I find that in Wisconsin, again, you know we try to keep, um, people in the home.
They stay there.
They stay with their children or relative.
So, and these...
The question is asked if somebody is going into a nursing home because of Alzheimer's,
uh, because there's a lot to know with Alzheimer's or dementia is we think that's just the...something
that comes natural to people and they should be taken care of and, you know, I see that
in a lot of Native American communities that I visit that the responsibility is theirs.
That they have to take care of the elders and the children.
Them are highly priorities in all of our Native communities.
Hopefully that answers your question a little bit.
All right.
So, that was the end of our slide presentation.
I just want to thank the many collaborators here.
So, the Dorothy that Wes is mentioning is my dear colleague Dr. Dorothy Edwards, who
couldn't be here today unfortunately, but she's a key player in this.
And there are many individuals who have helped really support this work by providing either...allowing
me the time to go do this work and make the connections and many individuals on the Oneida
side as well and *** (unclear - 56:32.)
I think with that we can...
I don't know if there's still time for questions.
Julie, I'll turn this back to you.
Okay.
Thank you, Carrie and Wes.
So, there were a couple of questions that came in, um, while the presentation was occurring.
We only have a few more minutes, so we'll just touch on those questions that came in.
So, one question was, "How can...
Wes and Carrie, are you two available to give presentations to other folks in other communities
similar to this one?"
I believe so, if we can...
As long as we know ahead of time.
We don't want to say, "Hey, can you come up tomorrow?"
(Laughter.)
But we would be more than happy, because this is...
To me, this is an important issue and the more people that know about it, especially
in the community, I think that's beneficial to us and to them.
Yes, and I would echo the same sentiment.
I would also be happy, depending on where you are, if nothing else I can redirect you
to local people who are doing this work and certainly as Wes and I are doing this in Wisconsin,
but there...
As I mentioned a colleague of mine, Megan Dannigan (sp?), Dr. Dannigan is in Seattle
and he runs a quarterly phone call that pulls together others doing this work in the field.
So yeah...
You know, but there's another thing is I think that if we could...that party that's
trying to see if we can come out there, if they could do the similar thing that I think
that we can do it by phone if it's a great distance.
Technology now is great.
So ,I think that we would be available to come out there, but again, we would be more
than glad to present by whatever means you have there to allow us to present this, whether
it be another webinar or just an individual call to your organization.
Okay.
Well, I think that, um, perfectly rounds out this conversation.
In order to...
So, after...
Following this webinar, we will be sending out a thank you email to all of the registrants
and attendees; within that email we will provide Wes and Carrie's contact information, that
way if you are interested in reaching out to them about possibly presenting in your
community, or if you have other questions related to their presentation and their research,
you can certainly reach out to them through email.
Um, so with that I would just like to thank Carrie and Wes for joining us today and sharing
their knowledge and sharing information about their research project that is in its beginning
stages.
We will stay connected with Karen and Wes during their journey and hope to have them
present again down the road.
In closing, I would like to remind everyone that today's webinar was recorded and that
the audio and PowerPoint will be made available online at CMS.gov.
If you would like a copy of the presentation slides prior to the webinar recording being
available online, please email LTSSinfo@Kauffmaninc.com.
That's LTSSinfo@Kauffmaninc.com and I can send you a copy of the slides.
Thank you again for joining today's webinar.
Our session is now concluded.
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