Episode Transcript
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Speaker 1 (00:00):
I want to thank the community of DC on this
iHeartRadio station. Jenny Chase here back once again to talk
about Alzheimer's.
Speaker 2 (00:07):
There is a lot to know.
Speaker 1 (00:08):
And first up, we've got the board chair of the
National Capital Area Chapter of the Alzheimer's Association, mister Dean Brinner.
Speaker 2 (00:15):
Jenny, thanks so much for having me on. I really
appreciate this opportunity. And I'll just start by saying Alzheimer's
is so prevalent in our area, in the DMV Nationally,
we're the Alzheimer's Association is the largest nonprofit providing care
and support for people with Alzheimer's and their families. So
(00:38):
for everyone who's listening, probably the most important thing that
I can convey is we have an eight hundred number,
eight hundred two seven to thirty nine hundred, eight hundred
two seven to two thirty nine hundred if you have
any questions or just needs to talk to someone. I
(00:58):
know when I went through Alllzheimer's my mom passed away
from it in twenty eighteen, I felt I was doing
this all alone. I didn't know about the Alzheimer's Association.
So one of the most important things for this show
is just to convey to people You're not alone. A
lot of people are going down the same road that
you're going down. Reach out to us again eight hundred
(01:20):
two seven two thirty nine hundred or our website alz
dot org. Dean.
Speaker 1 (01:25):
One of the things we want to talk about this
morning is the recent report you guys put together, right.
Speaker 2 (01:30):
So, the Alzheimer's Association puts out a report every year
that we call Facts and Figures. We gather all the
information that we can from all the sources out there
about Alzheimer's and we always have some special topic that
we're going to focus on. And a few years ago,
it would be unthinkable to have a special report on
(01:52):
early detection or on treatments, because there was really no
such thing. When my mom was diagno with Alzheimer's, the neurologists,
the very competent neurologists basically said to me, Hey, you're
a nice son for coming with your mom to the doctor.
I wish you a lot of luck. There's nothing we
can do. That's not the case today, and that is
(02:14):
really a big headline. So today there are two drugs
we're going to get into this later in the conversation,
and these aren't sures. But these drugs slow the cognitive decline,
they slow the process of the person's memory being taken away.
But big butt here, the drugs are only available to
(02:39):
people who are in an early enough stage of Alzheimer's,
and we'll talk about that. But that's why detecting Alzheimer's
so early is so important now the special report. What
stood out about this is, you know, we always have
some naysayers out there. We always have some flat Earth
society people out there, and we had people who said,
(03:01):
you know, I don't want to know if I'm developing Alzheimer's.
My loved one doesn't want to know about it. It'd
be better just to have it take its course. And
so we decided, let's look into this and let's ask people,
you know, do you want to know whether you have
whether you're starting to develop Alzheimer's or not. And the
(03:22):
answer was absolutely overwhelming. Americans want to know whether they're
developing Alzheimer's. And then a related question is, hey, if
there were a blood test by which you could find
out whether you're developing Alzheimer's or not, would you want
the blood tests? Because again we have some people, you know,
(03:44):
they're kind of in the Ostrich group, they are just
hiding and don't want to know about it. And just
as we thought intuitively, the results are people want to know,
people want to take a blood test. And then even
when we tell people, hey, we have drugs, the drugs
aren't sure, but the drugs will slow the decline. And
(04:05):
by the way, the drugs have side effects, so you've
got to really proceed very carefully with your doctor. And
maybe not everyone is eligible for the drugs, but would
you want a drug like that? And the answer overwhelmingly
is yes. So all of this tells us that the
scientific progress we are making is right in line with
(04:26):
what people would want. Now, of course, people have concerns
what happened, what will happen with my insurance? Is medicare
going to provide coverage? How am I going to afford
the cost the immense costs for caregiving? None of this
is easy, But the special report kind of proveds up
that the scientific advancements are right in line with what
(04:49):
people want and what their concerns are.
Speaker 1 (04:51):
As someone who has dealt with a parent with Alzheimer's,
that caught my attention big time. This is really exciting.
New is about testing and treatments. Dean, what can you
tell us specifically about this new blood test that so
many of us have heard about and just gone, oh
my gosh, this could be a game changer.
Speaker 2 (05:09):
Right, So, yes, it absolutely could be a game changer.
And Jenny, I'm so sorry that we have Alzheimer's in
our family in common.
Speaker 3 (05:17):
Sorry about that, thank you.
Speaker 2 (05:19):
So the blood test is a gigantic game changer. So
what the blood test is is that when a doctor
suspects that the person could be suffering from Alzheimer's. So,
in other words, you go to the doctor with your
loved one who you're worried about. Something is off. The
(05:40):
doctor does a cognitive exam and says, gee, this isn't
something isn't right here. I'm worried that this is Alzheimer's.
Then what's the next step. So before the FDA approved
this blood test, the most common next step would be
that either the doctor would order or what's called a
(06:00):
PET scan, so a scan of the person's brain or
look at the spinal fluid. So there are big issues
with both of those. First of all, these scans you
need specialized equipment. The specialized equipment isn't available everywhere. People
are scared, you know, people who have who are developing Alzheimer's,
(06:24):
very very frightening experience to go have your brain scan
and then the spinal fluid exam, you know, very painful, again,
something that people would want to avoid. And so what
those two tests are looking for is that we know
that a biological hallmark for Alzheimer's is people with Alzheimer's
(06:48):
have a build up of this plaque in their brain.
It's called amyloid. It's a protein that kind of builds up.
You can think of it like gunk. You know, it's
just a build up, but it's hard to see. So
we either have today we either have to do a
scan of the person's brain or look at the spinal fluid.
So what the blood test is doing is in the
(07:10):
blood test, they're looking for certain chemicals in your blood.
We call them biomarkers, and these chemicals equate if you
have an excessive level of this chemical, that equates to
with a high degree of certainty ninety five ninety eight
percent certainty. That means that in all likelihood the person
(07:31):
has the plaque. And once that is confirmed with the
blood tests, then we can move to the treatments, and
the doctor could decide whether the person is eligible to
get the treatments. But what I want to emphasize is,
so this first blood test that's been approved by the
FDA just a couple of weeks ago, it's only for
(07:53):
people who are already developing symptoms. So you go to
the doctor with a loved one and the doctor doesn't
exam and decides, hey, this person is exhibiting symptoms. It
could be Alzheimer's. Let's go to the blood tests.
Speaker 1 (08:09):
Okay.
Speaker 2 (08:09):
The next step would be, you know, which is under development?
Would be a blood test that would screen people, just
the way you get you know, in an annual physical
you get your cholesterol checked, you get your blood sugar
and check, you get a bunch of blood tests. One
of them, hopefully would be a blood test to look
for these chemicals to see if you're developing Alzheimer's. And
(08:34):
the reason why that's important you know today, if that happened,
if you were if you just went and said, hey, doctor,
I want a blood test to see if I'm developing Alzheimer's.
I don't have any symptoms yet, doctors wouldn't do that
test because then what could they do for the person
there isn't. The treatments are for the people who are
already developing symptoms. But what's being tested in conjunction with
(08:58):
the blood test is giving the drugs to people who
have the plaque but aren't symptomatic yet. And so the
next step here is to use the blood tests of
blood tests for screening, so that again just the way
you get your blood tests, and you might have high cholesterol,
but you know you're not having chest pains yet, you're
(09:20):
not showing limbs of art disease. We would do the
same thing for Alzheimer's, and we would be able to
give the drugs to people who are starting to develop
this plaque at a very early stage to try to
knock it out. So the blood test is a huge
game changer, and we're very excited about it, and we're
(09:41):
looking forward to these additional developments which are so important.
Speaker 1 (09:45):
You know, I will just say, having it in my family,
I am one of those Americans who is very interested
to find out if this is starting to affect my brain.
I've already wondered about early onset. If I'm being completely
honest here, and I'm great grateful for what I'm learning
through you guys, all the advancements and what's out there
in terms of getting an early diagnosis. It's just really astounding.
(10:08):
You know, we're on the right track trying to get
this thing under control. I'm at a loss for words
because it's so meaningful. If that makes any sense.
Speaker 2 (10:16):
That makes a lot of sense, Jenny, and thanks so
so much for opening up that way. And let me
just say one other thing for your listeners. So how
do these developments? How does this tremendous research come about?
So it's true, the Alzheimer's Association is a great organization,
and we have the walked and Alzheimer's We have five
(10:38):
different walks all over the DMV. We have other fundraisers
that we're doing all the time. But with all the
fundraising we do, we can only fund a very small
fraction of this research. People want to know who's funding
this research. It's the National Institutes of Health NIH. So
when you hear about con risks considering funding for NIH,
(11:03):
or when you read about cuts to medicaid or cuts
to NIH research, those cuts are really hurting our costs here.
Those cuts are really hurting people with Alzheimer's. So you know,
I'll just say for people who have Alzheimer's in their family,
in addition to knowing that you're not alone, going on
our website alz dot org, calling our helpline eight hundred
(11:27):
two seventy two thirty nine hundred, Please please please support
full funding for Alzheimer's research at NIH, the number the
Congress has approved and the President Biden before January twenty,
it's signed into law three point eight billion dollars in
Alzheimer's research for the current fiscal year, and it's being cut,
(11:51):
and it's unfair and it's hurting people to see those cuts.
We need everyone who cares about Alzheimer's raising the flag,
raising the alarm, saying please keep the funding for NIH.
Alzheimer's Association. With all the fundraising we do, we fund
about one hundred million dollars of research, and that might
sound alike a lot, and it is, but not compared
(12:14):
to the three point eight billion that NIH funds. So
you know, and if you look at the drug other drugs,
you know, statins which are really saving so many lives
to heart disease, that came from NIH. These drugs that
we are talking about, the blood tests, all of that
comes from NIH. So It is exciting and we're going
(12:36):
to keep the research pipeline going as much as we can,
but we need the federal government support.
Speaker 1 (12:42):
I will just say that yes to everything you said.
You put it beautifully and can't stress the importance enough.
All right, you mentioned we now have treatments for those
who aren't in the loop on that. What are they,
how do they work, how do people access them? Let's
talk about these new FDA approved treatments, right.
Speaker 2 (13:00):
So, Jenny, there are two FDA approved treatments for people
in an early stage. Either they are in an early
stage of Alzheimer's or they're even in what we might
call pre Alzheimer's, which is called mild cognitive impairment. So
again going back to the biology here, this plaque that
(13:20):
builds up in your brain. What the treatments are is
they're antibodies. So people get them via right now, via infusion,
and they generate an immune reaction in your brain to
destroy the plaque, to knock out the plaque. And the
two drugs are called Lakimby and Kissunula. Let me try
(13:43):
that again, because these are funny names. They are Lakimby. Yeah,
Lakimby and kissunula and the drugs have are now out
there in the community and have been around now for
more than a year, and lots of people are getting them,
but many, many more could get them if they get
(14:05):
diagnosed early. So again, the key to these drugs is
they don't sure the Alzheimer's But we know both from
the testing before the drugs were approved and now looking
at the experience of the doctors and patients who are
prescribing and getting the drugs, we know that it is
that the drugs are working. They're slowing the cognitive decline,
(14:27):
giving the person more time with his or her family,
more time being able to engage in the activities of
daily living.
Speaker 1 (14:36):
I mean, we don't have a cure yet, but slowing
the progression is huge, right, It is a huge advancement.
Speaker 3 (14:45):
Right.
Speaker 2 (14:46):
So then the question, your next question is going to
be okay, Dean, but then how do people get these drugs?
So you know, the medical system complicated, hard to navigate, challenging,
but you know it all starts with getting to a
primary care doctor early. So when you think something is
(15:07):
a little bit off with your loved one, something doesn't
seem quite right, worried that you know gee, this is
like different than normal aging. The go with the person,
get the person to go to their doctor. The doctor
will likely do a cognitive screening exam, talk to the
person and do some screening, and then the doctor will
(15:31):
need to likely refer the person to a neurologist or
to someone else another type of doctor geriatrician who treats
people with Alzheimer's, and that doctor will will likely look
at the test results, will either do the blood tests
this look at the spinal fluid, or do the PET
(15:53):
scan and again if the drugs are in an early enough,
if the disease is in an early stage, then they'll
prescribe the drug one of the two drugs again Kissunla
or La kimbi. These drugs right now are given by infusion,
but the next step will be that both companies that
make these drugs are working on giving the drug by injection.
(16:16):
So huge problem with the infusion is you've got to
go to an infusion center. Now, one of the drugs
it's once a month. Another one of the drugs it's
more often than once a month. But you know, hard
to find the infusion center. Where are the infusion centers
coordinating the infusion centers with the doctors. This is all,
(16:38):
you know, not easy stuff, and that's why the next
step would be to give the drug by injection. And
then the other part of this is these drugs will
knock out the plaque entirely. In fact, one of them
does it a little bit sooner than the next one.
(16:59):
And by the way the drugs, different people react to
these drugs differently, and that's another area of research. Some
people are getting kind of an immense slowing with the drugs.
Other people maybe it's a little bit not nearly as
big of a slowing, and we don't know that much
about why, and that's another area of research that is
(17:21):
funded by an IH. But in any event, the first
step is you got to take your loved one. Go
with your loved one to a primary care doctor, have
the person get a cognitive exam. Feel free to bring
up the drugs. Is the is my loved one potentially
a candidate, and then you know the process is underway. Now.
(17:45):
If we'd been doing this interview a year ago, Jenny,
I would say that it's pretty rare. The people who
are getting these drugs are really a small group. And
I will just tell you that today it's increasingly large
numbers of people are beginning this process. We knew that
it wasn't going to be fast, It wasn't going to
(18:05):
be quick. This is a giant change in the healthcare system.
And you know, no doctor learned about this in med school.
This is all really new, cutting edge stuff. So it's
it's taking a little bit of time. But I will
just say in talking to people in our community, not
necessarily far away, but just in our community here, more
and more people are getting access to these drugs. In there.
(18:28):
The drugs are so far the drugs are working as
they were intended. And again this is just the first step.
No research is stopping. There are many other drugs that
are under testing. There are lots of clinical trials going on,
and in fact, it may be that curing Alzheimer's isn't
just one drug. It may be that people are going
(18:49):
to get more like cancers, several different drugs. We couldn't
we couldn't begin that to test that until we first
got a drug that worked in getting rid of the plaque.
And now we have two, and it's really very exciting,
a huge game changer compared to where we were just
a couple of years ago.
Speaker 1 (19:08):
Absolutely all right, big thanks to board chair of the
National Capital Area Chapter of the Alzheimer's Association, Dean Brenner.
Now I am joined by Karen Fagan, she's the vice
president of Programs and Services for said chapter.
Speaker 3 (19:21):
Thank you, Jenny. It's a pleasure.
Speaker 1 (19:23):
So the Alzheimer's Association, one of the big things they've
been doing in which we talked about with Dean, is
promoting the benefits of early diagnosis. Explain to us why
that is so critical.
Speaker 3 (19:36):
Well, as Deane mentioned, really in respect to treatments, early
diagnosis is just so critical because of the availability of
those treatments at the early stages. But the other reason
for early detection and early diagnosis is that it actually
once she received that diagnosis, you know what to do
for the future. You know how to plan ahead, you
(19:59):
know make in terms of how you want to live
the remaining part of your life. You know what do
you want to do? What's your bucket list? Other things
are planning for your future once you become possibly impaired
enough that you can't live at home, what are those
long term plans? And also planning for your family. There's
peace of mind that is involved for family members when
(20:22):
they know that they're able to carry out the wishes
of their loved one. So that's why it's so critical.
But also what's what is so critical is that you
have time to change your lifestyle. We know that diet
and exercise is so important for slowing down the progression
of cognitive impairment. So you know, make sure that your
(20:45):
blood pressure is under control, make sure that you're that
your blood, glue clothes, blood sugars are under control, begin
an exercise routine, Become more engaged in social activities, cognitive
acti these, all of this is so important. The more
that you can engage with others, the more that you
can take care of your personal health, so much the
(21:08):
better in terms of being able to slow the progression
of cognitive impairment.
Speaker 1 (21:13):
Karin, can we also mention the need to stop smoking.
Speaker 3 (21:17):
Absolutely, yes, yes, I mean you really want to look
at stop them smoking. Additionally, if you drink a lot,
maybe just turn you know, not drink as often. Yeah,
So anything pretty much anything that your doctor tells you
to do for heart health, it's important for brain health.
Speaker 1 (21:34):
That I think is such an easy way to put
it that people can really relate to. Because my dad.
As I've mentioned, he had cardiac issues were what ultimately
caused him to pass. But I've become so focused on
my own cardiac issues, So to put it in those
terms of what you do for your heart needs to
be what you do for your brain. I think that
(21:55):
takes such a complex thing and makes it just so
much simpler. So thank you you for that. You know,
as we've talked about, it's a little daunting when you
realize this might be something you're facing. How do you
approach your doctor about asking for a diagnosis? Can your
primary help you? Do you have to go to a specialist?
Can you just explain that process to us?
Speaker 3 (22:15):
Sure? Sure, yes, understandably. You know, if you're experiencing cognitive
you know issues, you definitely want to see your doctor.
And again getting back to early detection, early diagnosis, the
sooner you can get in to see a doctor, the
better it is. And so really your primary care doctor
is that first stop along this journey. And then just
(22:39):
you know, talking with the doctor about what some of
your concerns are, explaining what it is that you're experiencing.
You may also want to talk about what some of
your current you know changes and your health have been,
how it has it been, mood memories, and then also
what some of your current and past medical problems have been.
(23:00):
So this is all very important in terms of discussing this,
discussing your history with the doctor, maybe concerns that you've
had previous family members such as yourself, such as myself,
who have had Alzheimer's dementia, so you know, it's a history,
it's part of your family makeup diabetes, partiovascular disease. And
(23:23):
then also to talk about what your current prescription medications are.
Oftentimes prescription medications as well as over the counter medications
can mask or confuse symptoms of dementia, so they may
cause certain short term memory losses, such as you know, vitamins,
thyroid medications, and so all of this is very important,
(23:47):
and so that's why the primary care is the best
person that's the first stop to try and tease out
what some of these other factors might be that could
be contributing to potential memory loss and maybe be the
cause of it, and not to mention here.
Speaker 1 (24:02):
And I also want to make sure that we touched
on this something I have begun doing as I am
getting older, paying more attention to my health I make
a list before I go to see my doctor, Questions, concerns,
just anything I need to touch on during that appointment.
I write it down beforehand. Sometimes I add to it
as I'm in the waiting room, you know, because something
(24:25):
comes to me. So I really want to stress that
making a list of everything you want to cover can
be a real help.
Speaker 3 (24:31):
Absolutely absolutely, you know, not only is it your concerns,
but you know, what does this process look like? Yeah,
what does that diagnostic process look like? You don't you know,
it's so good to know what you're walking into and
not be surprised.
Speaker 1 (24:47):
So you've made the appointment, you go in for the diagnosis,
the diagnostic visit, however you want to phrase it. What
all is going to happen during that time with your doctor?
Speaker 3 (24:56):
Well, we've talked a little bit about what your family
history is, so that medical history you're going to have
to delve into that a little bit more in depth.
So maybe what some of your current health problems are
again what that family history is. And then they'll be
the physical exam, so you'll be you know, reviewing diet, exercise, nutrition,
(25:17):
alcohol use, smoking, cardiac health. You know, what's your blood
pressure like? Are you taking medications to control your blood pressure,
your pulse, temperature, lung so what you can expect in
a normal physical exam. There will probably also be blood
samples and urine samples. The blood work will try to
identify vitamin deficiencies or thy word problems, which again could
(25:41):
potentially cause that confusion or about is this really memory
loss or area is it something else that's causing it.
There will also be a neurological exam. Can we rule
out whether this person who's had stroke, is this Parkinson's
disease that we were looking at, are their brain tumors
(26:02):
fluid on the brain, So these are other things that
could potentially mask and can confuse the diagnosis. Then you'll
also be experiencing reflexes, coordination, eye movements, everything that we
go into a regular neurological exam. Also potentially there will
be brain imaging, so you may be sent for an
(26:25):
MRI or a CAT scan or a PET scan, which
is the gold standard for the diagnosis of dementia.
Speaker 1 (26:33):
As we talked about with Deno that sometimes that's really
hard to come by, not as accessible as some of
these other MRI or a CT, which you can kind
of sometimes just go down the street to get.
Speaker 3 (26:43):
Absolutely, you're absolutely right. The new blood testing is another
data point in this journey, and so you know, if
blood testing is used, but there's still a little bit
of oh is this really dementia, that person may be
sent for further image. Yeah. Yeah, And then other things
such as the cognitive testing. There's a lot of different
(27:04):
pen and paper cognitive testing. There are now some new
FDA approved digital cognitive tests, and then genetic testing. Genetic
testing would probably require a little bit more counseling. It's
not always used, but it is something that can potentially
be used in the specialist environment.
Speaker 1 (27:26):
So with your neurologist that you that you possibly get
referred to exactly. I have learned so much about what
the Alzheimer's Association does over the last few years. For
folks who aren't aware of your vast resources, can you
just kind of spell those out for us and tell
us how we can get help.
Speaker 3 (27:45):
Absolutely, you know, Dean mentioned our twenty four to seven
helpline multiple times and you can't say it enough eight
hundred two seven to thirty nine hundred. You can call
us for information referrals. If it's two o'clock in the morning,
and you just can't take it and you need to
talk to somebody. The Alzheimer's Association is there. Our helpline
(28:07):
is staffed by master's level dementia care specialist, so when
you pick up the phone, you know that you're talking
to somebody who has experienced and knowledgeable. You can also
look at our website alz dot org, and you can
get information on what the diagnosis looks like, what you
can expect, how to talk with someone about Alzheimer's disease,
(28:30):
what to do when you're preparing to go see the
doctor for the first time. Yeah, And then at alz
dot org you can also find out about our support groups.
Our memory cafes are in person and virtual education programs.
Speaker 1 (28:45):
You know, I've talked to several people over the years
who said kind of like what Dean was saying in
the beginning, like you're not alone in this, and they
say that reaching out to you guys, calling the number,
looking at all the stuff on the website again to
use the word, it's been game changing for them. Everything
you guys put out there for us, as far as
(29:05):
helping and making sure we have what we need it is.
It's so invaluable it's just amazing, So kudos to whoever
is in charge of that PROPS.
Speaker 3 (29:15):
Well, thank you, Jenny. I definitely agree. When my mother
was diagnosed with younger onset, it was the nineteen eighties
and I wish I knew now then what I know now.
It has changed vastly and what and what the Alzheimer's
Association has been able to do to support families and caregivers.
Speaker 1 (29:35):
Like I said at the beginning, there is so much
to know about Alzheimer's, dementia, memory loss. Can't stress it enough.
Log onto alz dot org for any questions you might have.
Speaker 2 (29:49):
Build the bucket so clean the oceans and make the
world better.
Speaker 3 (29:53):
Slea learn more at she Can STEMPS. A message brought
to you by the AD Council.