Georgia Focus - Alz Assn

Episode Transcript

Speaker 1 (00:10):
Welcome to Georgia Focus. I'm John Clark on the Georgia
News Network for the first time. Over seven million Americans
are living with Alzheimer's. Odds are Dementia will touch your
life in some way, but not if we can help it.
Today we're going to be talking about Alzheimer's and the
Alzheimer's Association with the Alzheimer's new executive director, Clay Jacobs
in Atlanta. Well, Clay, it's good to meet you.

Speaker 2 (00:33):
It's a pleasure. Thanks so much for having me.

Speaker 1 (00:35):
I know you're new to the Georgia location in Alzheimer's Association.
Everything else to talk about your transition and we moved
to Atlanta.

Speaker 2 (00:44):
Yeah, it's a pleasure to be here. And I've been
with the Association for what is almost seventeen years now,
really starting in a different era, right when our work
was primarily and almost solely around supporting me in late
stage caregivers and funding research like treatment and risk reduction
and early detection. We're not in a conversation, but so

(01:04):
I've been with you association various roles for that long
and was the chapter exact for Pennsylvania the past few years,
and as we looked at a retirement here in Georgia
and all the incredible things going right that it just
seemed like a great opportunity and fit. And so for
the past few months I had a chance to relocate
and slowly getting to know Georgia, Atlanta and the rest

(01:28):
of the state and really talk about the Alzheimer's Association,
our mission and what we're hoping to achieve for families.

Speaker 1 (01:34):
Have you found that Georgia has more Alzheimer's or is
it the same as Windy where we were before, they
have the same amount of Orsham's? Do we have more
here in Georgia?

Speaker 2 (01:42):
So you think you look at very similar in terms
of the scope and impact, right. I come from Pennsylvania,
where you know, you have some of the major cities,
but then lots of rural communities, lots of communities were
health access and other pieces very similar to Georgia too.
Large state were right where you associate, where you connect

(02:04):
with and really how you experience this disease. It's a
disease that you experience in your community. Right, It's with
your friends and family, your physician, your faith community. And
so you find a lot of that to be similar.
But certainly you know the impact and scope of the
disease everywhere is unfortunately growing, and that's an important part

(02:26):
of why we do the work we do.

Speaker 1 (02:28):
Notice now it's all over Georgia. You have chapters in
every part of Georgia. Now, oh, you used to not
have that. I remember used to years ago. You're like, what,
I do they have Alzheimer's? What do you mean they
have off them? Now you have help in wherever you
are enjoyer.

Speaker 2 (02:44):
Right, that's the hope, and in all the ways that
people access it.

Speaker 1 (02:47):
Right.

Speaker 2 (02:47):
So, whether it's through awareness programs, education support groups, care
planning sessions, et cetera. It's not only those things that
are available directly in community, right you go to your
local library or senior center, but also available online, also
available by a phone. And I think that's important because
on a given day, if we're interested in having the

(03:11):
conversation or not, or it's the one moment we could
take away, or it's three am and I need to
call and talk to somebody, and I can be in
my living room to do that. Our hope is that
we're there for folks when they need us in the
way that they need us, and for some people that's
in person some it is in other ways, but ultimately
it's about what's accessible because often our schedules and are

(03:35):
understanding and other things are dictated by outside of our control,
and we just want to make sure when somebody is
ready for support or needs to know they're not alone,
there's a pathway for them.

Speaker 1 (03:46):
What are some of the things you plan to change
along the way, now.

Speaker 2 (03:50):
Well, it's I think one of the things is we
look at it. It's not just necessarily pieces where I
see opportunity, but it's where we're moving. Right In the
past few years, we've had the first treatments ever approved
by the FDA. We're on the precipice of the largest
risk reduction trial in the world. We'll be releasing its
results this summer, and so there may be things that

(04:11):
we know help reduce risk or reduce severity. We also
know things like how we diagnose things like biomarkers where
we're talking about blood tests to diagnose this disease, or
retinal screenings or other pieces. The world is changing, and
we also know that compared to twenty years ago, the
disease starts ten to twenty years before we see symptoms,

(04:34):
and so instead of that historical work around reaching folks
in the mid and late stages of the disease and
solely caregivers. We have to be talking much earlier around
what are the things we're doing that are good for
our overall health? How are we taking care of brain health?
How are we getting diagnosed early and accurately? And I
think that shapes a lot of what I hope to do,

(04:55):
because that isn't about people finding the association, about us
meeting them where they are. Because if I'm concerned and
I go to my church, or I go to my
employer or others, well then those should be the place
where hopefully you're seeing and hearing us.

Speaker 1 (05:11):
You know, That's that's true. Now, Before we didn't know
how to diagnose it, and this we did a brain
and brain diagnosis after they died. Now they now can
can tell if the person is Alzheimer's ahead of time,
and that has a big difference.

Speaker 2 (05:30):
That's a huge difference, it does, And in so many
ways we think of this and many families like mine
and others who've been through this. Right, you see the
person you care about changing, and that's what we do.
That's also how we looked at research. Right, we see
we talk to the doctor. Once we see changes that
have gotten so severe, we enroll in research trials. But

(05:51):
it's after things have already progressed, whereas research has really
moved to a place where we're looking at the biological changes.
And so that I of it means the stigma becomes
really important, because if we can identify the biology and
treat it, we have to be having a conversation.

Speaker 1 (06:09):
Right.

Speaker 2 (06:09):
It means we can't be you know, reducing or minimizing
the early symptoms and those pieces. But it also means
that things like imagine a future where part of your
regular blood screening includes if you have a part of
your diagnosis, or an eye test or any of those pieces.
It just changes the conversation, but it also becomes place

(06:30):
where hopefully it's not as scary because there are also
things we can do to intervene.

Speaker 1 (06:35):
Right, there are some drugs out there now that's said
to do away the disease, but they aren't. They aren't
by the time exibic symptoms is too late? Is that
when I was saying that, right?

Speaker 2 (06:49):
It is so the currently FDA approved treatments and there
are some going back twenty years that deal with some
of the symptoms and reducing symptoms. But the most recent
have really been these what we call monoclon olantip bodies. Ultimately,
what they do is they're clearing amyloid protein, which is
a hallmark of the disease from the brain, and they've
shown in certain folks that they improve cognition and activities

(07:11):
of daily living. But to your point, only in the
earliest stages. That's where they've been tested, it's where they're approved,
and so that means that the earlier someone's diagnosed, the
earlier they can receive access, the more benefit. And I
think the important piece is with that we don't want
to minimize that right that the first treatments ever is

(07:32):
huge and often what we've seen in other diseases, well,
in all you have to have the first to have
the second, and the third and the fourth. And I
think that's the exciting the things that are in the
pipeline that could be even stronger in the coming years.
But all of that goes about being comfortable having a conversation,
being comfortable going to our position, and then our health

(07:54):
systems knowing what to do when we do it get there.

Speaker 1 (07:58):
I think that we've come so far I experienced a
disease with my grandparents years ago. But we've come so
far the stigma of it. Now we've talked about openly
about Alzheimer's, talking about alzheimer I say it all the time, Alzheimer's,
and people are now talking about it. That doesn't have
the stigma that one's.

Speaker 2 (08:15):
Head certainly improved a lot and anything, and the understanding
of it. Yeah, it's just at a conference and we're
asking if folks understood the difference between dimension Alzheimer disease,
and everyone in the crowd did. That's a far cry
from and we see it in media. We see it
on folks willing to share their story, we see it

(08:35):
in communities, somebody willing to share. They're certainly still sigma right,
especially for someone who's experiencing the early signs, not wanting
folks to judge them or have a loss of independence,
or you know, if they're still working or doing those
active things. They don't want people to treat them differently.
But I think the larger conversation, to the point, though

(08:58):
it's part of the need, is recently, for the first
time ever, the things that folks are most scared of
in terms of health issues are cancer and Alzheimer's ease
on equal footing, and so that that's important that folks
are aware of and concern, but that also puts an
urgency to how do we do things to make life
a little bit better for those living with it?

Speaker 1 (09:19):
Wow, that's amazing right there on the level with cancer,
you know.

Speaker 2 (09:23):
Yeah, yeah, and the impact is similar and so and
yet it is the thing that we for the first
time have a chance to treat or cure, but for
so many others and so many other forms of dimension.
So really, that to me just highlights that folks are
talking about it, they're aware of it. But again it's
then means how active do we need to be to

(09:44):
be able to make a difference for them? And that
we know too many people who've been impacted.

Speaker 1 (09:49):
Oh yeah, definitely. You know, I think about those people
that are out there, people listen to this radio show,
who are I don't know what to do. It's three
o'clock in the morning for them, and they I don't
know who to call and what to do And is
somebody you can call? Now you'd used to not be
able to call in the call them talk about that
the call in.

Speaker 2 (10:07):
Number that Yeah, so we have a twenty four semon helpline.
It's available in two hundred languages and dialects and has
access to master's level clinicians. Ultimately, you know, their goal
is to be able to answer anything you might have
when you have it. So you can call it eight
hundred two seven to thirty nine hundred, but it could be, hey,
I saw something on the news and I want a clarification,

(10:29):
or it could be I'm really dealing with something right
now and I need to build a care plan. Our
hope is that you know, if it's an immediate thing,
we could resolve it. But then also if it's something
where you need to be connected to local resources or
develop a plan, or it's not to here's all the
things you need for the next five years, it's here's
the things you can do right now, and let's connect again,

(10:50):
and let's connect again, and let's connect again, so that
we're partners in that component. I think it's a really
important It's it's often where folks connect to us. It's
often resource. When we look at care planning in a
healthcare system. Knowing that somebody has twenty four to seven
access to connect to those things is just is vital

(11:11):
and knowing that there's no barriers based on languages or
dialects or even hearing assistance. If someone has those issues,
all of those services are available and it doesn't matter
where you are. So if you're calling, if you live
in California and you have family in Valdosta and you
call in, we're gonna be able to talk to you
about what resources are available in Valdosta. How do you

(11:32):
connect there? And so that connectivity, knowing that families and
friends are spread out is a really important part of
it too.

Speaker 1 (11:40):
Yeah, that was something we didn't have way back then,
and I'm using this example. We didn't have anybody to call,
no number to call it. I'm so thankful that has
number did you can call it no matter where you are,
you calling, you talk to somebody, and that that really means.

Speaker 2 (11:53):
A lot now it does, and it's just again being
there for people in the place and time when they
need it can often mean the world. And if somebody
they may only call once, right right, you have that
moment you need it, and if you don't get what
you need there, you may not call a second time.
And so that's something that's really important to us, is
making sure we're they're for folks at their greatest need.

Speaker 1 (12:16):
Well to do this stuff. It takes money, of course,
you have to do that. It does. I know you
have some fundraisers coming up, some walks coming up in
the fall, and some other some dances and things like that.
What are some of the things and where can people
go to find out where they can give money?

Speaker 2 (12:34):
Absolutely so you can call our helpline for any of this,
but you can also go to our website at alz
dot org to look up and ultimately talk about our
current support work. We're also funding actively in Georgia four
million dollars in research and doing work on public policy.
All that is supported by our events. And so the

(12:55):
walk tend to Alzheimer's is our largest signature event. Twenty
communities across Georgia together in the fall, but fundraise year round.
To have teams to bring families and companies together not
only to raise funds, but to raise awareness. Right is
whether it's fundraisers they're doing, or community education or others.
It's how do people connect to the association. And then

(13:17):
in the fall, how do you celebrate and recognize and
memorialize those or those living with the disease have them
join us. We also have something called the Longest Day,
and the Longest Day is each summer, so we're actually
coming up on it. But it's where folks do something
they love to honor a loved one. And so we
see folks that hike the Appalachian Trail or make jams

(13:39):
or play pick a ball. Right, it's really doing those
type of things where you are. And then Georgia uniquely
has we have three Gale events Dancing Stars events in Columbus, Savannah, Atlanta.
In fact, Atlanta is poised to become the largest one
we do in the country.

Speaker 1 (13:56):
Oh really, Oh but.

Speaker 2 (13:58):
Those events bring together philanthropic individuals and fundraisers who are
all competing against each other. They're learning how to dance,
but also completing competing financially to raise funds and all
of that helps underwrite the work we do across all
of Georgia.

Speaker 1 (14:15):
In Georgia, you had where police now to encouraged to
provide some type of training for their officers for Alzheimer's people.
What's your thoughts on that and how do you think
that this will be received?

Speaker 2 (14:30):
Yeah, public policy is so vital to our work because
it's one of the things you can do that can
impact all Georgians right as moving policy, and so the
recent work that we did around first responders was really
giving them the tools on how to interact right, how
do you have conversations, how do you follow up to

(14:52):
if there's a missing person. But it's really about giving
those resources that are evidence based, so we know if
we do these things, comes are stronger and giving folks
access to that. It's something we hear from families certainly,
but then from professionals in the field and so to
have in Georgia this legislation passes vital and the support
to do it. So I think that's as we look

(15:14):
at state policy. There are so many things because that
has a big impact on our day to day life.
But that idea is, you know, as folks opt in,
but imagine that space where anybody responding to a missing
person's incident or in an er or in other settings
were trained on dementia basics and knew some of the
tools on how to interact. The outcomes and experiences we

(15:38):
know right by research and other and practical just are
that much greater. And so that's how one of the
ways we want to help improve lives for everyone.

Speaker 1 (15:48):
I think they can do some good with that because
I know that when people go missing, people with Alzheimer's
go missing, that's what they do. They look back, they
just do and they go missing. And so the police
officers a lot of times don't know the questions to ask,
don't know what to think about. So this is gonna
help them, now, I think is gonna help them immensely.

Speaker 2 (16:09):
Yeah, that's that's the hope. And we know that places
where these type of programs are in they do. It helps.
It helps reduce the anxiety, it helps improve outcomes, It
helps even the things on the type of pieces to
look for, the information, ask families, right, all of those
things help come together something as simple as what somebody's

(16:30):
preferred name, right, you know, what do they interact with
or what are the places they normally go? So maybe
they were heading home, but it's a home that they
lived in thirty years ago. All of those training and
practical implications can just make such a difference.

Speaker 1 (16:44):
Oh yeah, it's it's it's it's immense, amiss. The difference
is immense. You cut your time searching for them down
to nothing. I mean, you hope it's nothing, but it's
still you cut it down greatly. Yeah, and where the
mercy rooms and doctors and all learn from that too.

Speaker 2 (17:04):
They're not in there. But you look at some of
those opportunities, it's the same type of opportunity. And in
some cases it may be that somebody say somebody is
missing and they end up in the er. That helps
translate that with the police are informed. But you look
at all of those settings where you have right some
of the scariest moments that you could run into. Those

(17:24):
are all places where we could make it a little
bit easier. And so this recent legislation has a huge
impact on that first responder. But I give that example
of what if throughout that process folks were informed and
educated about Alzheimer's ease and dementia, how much how improved
it would be for everybody involved and take some of
the even for professionals, take some of that concern and

(17:46):
worry about what do I do out of it? Because
give the training and resources.

Speaker 1 (17:50):
To know if they want to get the trainings, they
call Alzheimer's Association for that.

Speaker 2 (17:55):
It certainly came for more information. I think we'll be
working then with this legislation on how do we roll
it out to so some of that'll be built into
the next steps, but on any of those pieces, you
can contact us. And then even before that rolls out
in Georgia, we have some tools for first responders readily
available on our website right so folks can give us
a call or visit the website, and then as the

(18:18):
Georgia specific pieces go, there will be more and more coming.

Speaker 1 (18:21):
Good, that's coming, folks, is coming, it's coming. Let's talk
about the doctors and healthcare professionals that are dealing with this. Now.
I know you have a lot of neurologists that that's
what they specialize in, is Alzheimer's, but in other things too,
are they what are they saying nowadays about Alzheimer's? Are
they working to I guess to when you go to

(18:43):
a doctor, can you you know this right doctor to
go to?

Speaker 2 (18:47):
Saying yeah? Well? And it's incredibly challenging, and physicians are
dealing with a lot as we look at this, and
you see that that approach is changing right now. Most folks,
necessarily until things become a cute, may not see in
behavioral neurologies or others. They're often seeing their primary care
and so there's a lot we can do to help
primary care physicians know what to ask and how to

(19:08):
diagnose and really in the area of treatment to the
importance of it or risk reduction. But there's still more
to do, right and there's even things as we look
at that on looking at things like risk factors and
how do we intervene. Who are the folks we should
get tested? Is there access to testing depending where they live?
And so a lot of that work you see is

(19:30):
happening now. We're doing it from working with health systems
individually to give them them those tools. You see organizations
like the Joint Commission looking to set standards so that
health systems and physicians know what to do. You see
lots of education coming out, but it's still in process
right still today we look at it's an average of

(19:51):
two to three years before someone receives a diagnosis from
the first time they actually highlight that their symptoms and
so that idea that process and then it's even more
difficult if someone's under the age of sixty five. Right
that young girns at Alzheimer's ease is often dismissed as others.
So there's still a world of difference to go. I
think one of the really exciting things that we've seen

(20:14):
is that we're seeing through something called the Guide model
and their sites throughout Georgia. We also see through the
memory centers and other components. But this idea of dementia
care planning and dementia care navigation right and other disease
is that idea if we look at the cancer example, right,
if there was a concern, you know you're going to
get a biopsy or screening. You know that if you

(20:36):
have cancer, there's going to be a treatment plan and
a follow up plan and support of services and all
of those other things. That's not been the norm for
Alzheimer's ease. But as we look at dementia care navigation
now on yes, how do we do education and resources
access to a twenty four to seven helpline as an example,
giving some advanced notice on what are care transitions, what

(20:58):
to plan for, what to plan for, legal and financially,
Those are starting to become the norm because we know
it helps keep people at home longer, it helps improve
their outcomes, and it helps them live the best life
they can for as long as possible. So that care
navigation is something that I think and hope we'll see
a lot of change when it comes to own systems.

(21:20):
But there's still a.

Speaker 1 (21:20):
Lot of work to do. You know, you mentioned one thing.
One thing is legally that there's so many ways. You know,
get lawyers, get a lawyer. You got to do things
legally because you might not be able to function one day.
You need to get illegally done too too.

Speaker 2 (21:34):
Yeah, I think the most important too. In everyone's situation
is different. But where we sit today, well, we know
treatments can ultimately improve outcomes for folks for the percentage there.
In many cases, this is a progressive neuroggeneral disease. You're
going to see changes. And yet often if we're not
comfortable having that conversation or diagnosed them, we're not quite

(21:57):
sure what that means. We look at what's right in
front of us, or we wait too long till we
can't make those decisions. And so that idea, if there's
family history or concerns, sitting down and developing a plan,
what are those things? How do I make sure that
I'm taking care of that, my family's taking care of
What are the things that I would want for care?

(22:19):
All of those conversations are really important, and so we
talk about care, navigation or even just knowing those tools right.
We'd love often people call our helpline because something so
serious has happened they need an immediate response. You'd love
it to be a year or two prior. Wa is
here the things to do to plan? Here are the
things to put in place, And so I think that's

(22:41):
one of the big shifts hopefully we see. Is you
know I mentioned earlier about being where people are before
they reach us in as you do those things folks
knowing Okay, I don't know exactly what to do, but
I know where to turn. You don't have to know everything,
but you know, okay, what's the next step. And the
more we can do that, I think the better.

Speaker 1 (23:00):
That's true, That's very true. You mentioned earlier that June
is a special month for you. Alzheimer's talked about that.

Speaker 2 (23:07):
Yeah, So JUNA is Alzheimer's and Brain Awareness Month. And
it goes to your last question is that there's still
stigma and so JUNA is really a place where we're
talking about the brain overall, we're talking about healthy habits
and risk reduction, So it's applicable for everybody. We're doing
things like the ten warning signs of the disease, or

(23:28):
helping raise visibility through the longest day. It's ultimately meant
so that folks can start a conversation and know in
their community the resources, but also be aware of Alzheimer's ease.
You know, as we look at other times a year,
there may be federal holidays, but June is really that awareness.
You see whole skylines turn purple, town turned purple. It's

(23:49):
meant to spark a conversation and really has been something
that's grown exponentially in the past few years. That's pretty
impressive to see.

Speaker 1 (23:58):
Of course, every month, want to do it now, you
need to need help? Now, you want to do that now,
don't wait till June. But June is a special month
for Alzheimer's Association. Absolutely, yeah, absolutely, and one more time,
give out the number and the website and where people
should go if they need help.

Speaker 2 (24:13):
Yeah. So one eight hundred two seven, two thirty nine
hundred is our twenty four seven help line. There are
so many different resources on our website. You can find
information for caregivers or first responders, or about research and
so if there's any the easiest is alz dot org.
But hopefully once you connect there, you can find the
thing that's most applicable to you. Ultimately, anyone living with

(24:38):
dementia impacted by dementia, we want to be able to
have resources for them while we work together towards our
vision of a world without Alzheimer's, seeds and all other dementia.

Speaker 1 (24:49):
Well, thank you so much for taking time to do this.
I appreciate it, and good luck in Georgia. Thank you
so much.

Speaker 2 (24:54):
It's a pleasure. Appreciate you.

Speaker 1 (24:56):
That's Klay Jacobs. He's a new executive director for the
Alzheimer's Association. To find out more, visit them at the
Alzheimer's Association's website alls dot org aalz dot org. Find
out about the Longest Day and all the walks to
end Alzheimer's at aalz dot org. For immediate assistance, contact
the Alzheimer's Association at eight hundred twenty seven two thirty

(25:18):
nine hundred. There's a live person twenty four to seven
eight hundred twenty seven to two thirty nine hundred, twenty
four hour helpline. For questions or comments about today's program,
you can email me John Clark at Georgeannewsnetwork dot com.
Thanks for listening. I'll talk to you next week right
here in your local radio station on Georgia Focus