Making Sense of Medications in Lewy Body Dementia
LBDAtv
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1,196 views May 23, 2026
The Lewy Body Dementia Association (LBDA) is proud to present "Making Sense of Medications in Lewy Body Dementia."
This session discusses the most commonly used medications in Lewy body dementia (LBD), why certain drugs may be helpful and which ones should be avoided due to sensitivities unique to the disease.
00:00 - Introduction with Rachel Rose, MOT, OTR/L
03:50 - Polling questions
04:40 - Introduction of Dr. Matt Barrett
06:20 - Learning objectives
12:46 - Major symptoms in LBD
32:42 - Treatment of anxiety in LBD
54:53 - Summary
56:00 - Q&A
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This session will explore safe and efficient methods for transferring individuals living with LBD and techniques that help reduce the risk of injury for both the person assisting and the individual receiving care.
You will also learn effective cuing approaches that promote clearer communication and cooperation, making daily activities more manageable.
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Transcript
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Introduction with Rachel Rose, MOT, OTR/L
Welcome everyone to our May webinar of the 2026 webinar series titled making
sense of medications in Louisbody dementia. My name is Rachel Rose and I
serve as the education manager for the Louisbody dementia association. Thanks so much for joining us today.
We want to extend our sincere appreciation to GE Healthcare whose generous support makes this series
possible. Their commitment to advancing awareness, diagnosis, and care for
people living with Louisbody dementia aligns closely with our mission at LBDA,
which is to optimize the quality of life for those affected by Louisibody dementia. To do this, we accelerate
awareness, advance research for early diagnosis and improved care, and provide
comprehensive education and compassionate support. Before we get started, I'll review just a few quick
technical notes. To turn on close captions, click the show captions icon
on your Zoom toolbar. You'll also see a resources icon on the toolbar. This is
where you'll find handouts to save and download which will accompany you during and after today's webinar.
Please send your questions any time throughout today's presentation using the Q&A icon. The chat function and the
raise hand function are disabled for today's webinar. My colleague Emanuel
and Julia will be sharing helpful links in the chat. And if you miss any, please don't worry. We'll you'll receive all of
those links along with the recording of today's presentation in about one week in our posteinar thank you email. When
we close the webinar today, a brief survey will launch. Your feedback is incredibly valuable and it really does
help shape our future programming. So, please consider taking our very brief survey and sharing your feedback with
us. And before we introduce today's speaker, we'd love to highlight a few LBDA resources to support you.
You can keep learning after today's webinar and until our next webinar with on demand options. Recordings of all of
our past webinars like today's presentation can be found on our YouTube channel LBDA TV. Please feel free to
explore the many topics from our expert presenters. The Louisie Learning Center is also a
go-to hub for on demand education. It offers a wide range of courses you can watch for both community and
professional audiences. You just need an email address to sign up and you'll have access to these modules at no cost. You
can revisit these lessons anytime and they are intentionally shorter sections making learner learning at your own pace
attainable. And please feel free to share these with friends, family or anyone wanting to learn more about LBD.
You can also check out Spark, the powerful film that highlights Robin Williams journey with Louisbody dementia
along with a variety of other meaningful video offerings on our Mediflex channel.
The LBDA Louie line is your direct connection to knowledgeable support for life with Louisbody dementia. Whether
you're living with LBD or you're caring for someone who is, our team can help you navigate challenges, find resources,
and get the answers that you need. and are tailored to your specific need.
And last, but certainly not least, your support truly impacts the lives of people living with Louisbody dementia.
If you're able, please consider making a donation to help sustain the programs, resources, and advocacy that families
depend on. Every gift strengthens our ability to offer hope, guidance, and community to those who need it most.
Polling questions
Now, let's take a quick poll of the audience to see how familiar you are with today's topic. This question just
helps our presenter know a little bit more about your experience.
All right, thank you for answering. They're rushing
in. Okay,
just over half have about intermediate some experience with medications for
Louie with um the second largest portion about 30%
um as a beginner. Okay, thank you so much for for answering that polling
question. All right. Now, let's meet our
Introduction of Dr. Matt Barrett
presenter. So, Dr. Barrett is a professor of neurology at LBDA's research center of
excellence, Virginia Commonworth University, where he specializes in movement and cognitive disorders,
including dementia with Louis bodies, Parkinson's disease, and progressive super nuclear palsy. His research
focuses on improving treatment of cognitive impairment and DLB and
Parkinson's by better understanding their underlying causes. Please use your reactions and join me in a warm welcome
for Dr. Barrett.
Awesome. Thank you guys so much. We're getting a lot of claps, a lot of
reactions.
Welcome Dr. Barrett. Thank you.
Awesome. Okay. And it's working. Great.
All right. Thank you. All right. Hello everybody. It's I'm
pleased to be here and to speak about medications and Louisbody dementia.
It's a uh it's a top we're going to cover a lot of topic uh today, a lot of material. I I hope uh that there's uh
something for everyone even even those who have some advanced knowledge of this area.
Learning objectives
So my goals today are that we uh that you leave understanding at least some more about the medications that we
commonly use in Louisbody dementia, why we use those medications and then which ones should be avoided and why we
should uh avoid those certain medicines. I want you to understand how you can recognize some signs of of common
medication related problems and just the fact that individuals with Louisbody
dementia can have greater sensitivity to medication side effects. And then lastly, to learn some practical
strategies for partnering with your healthcare providers and how to simplify medication routines and and overall
support safer, more effective treatment. So, first I'll start with just some general principles about medication use
in Louisbody dementia. As I already alluded to, individuals with Louisbody
dementia, especially when it comes to the cognitive symptoms, may have greater sensitivity to some medications, greater
confusion, greater sedation. Medications that we might think of as fairly benign, even over-the-counter medications might
have some pretty significant effects for those with Louisbody dementia. So, even before trying any medication, it's fair
to review that with your provider. And uh moving to the second point, it's always fair to take a very gradual
approach to any new medications. So it's very easy to remember start low and go
slow, which is a a good principle I think for any medications that we might use to treat the symptoms of Louisbody
dementia or in an individual with Louisbody dementia where we're treating something different.
I think another good principle is to make only one change at a time in uh any
drugs. So the the importance of that is it's difficult to assess the effect of a
medication or a negative effect if someone makes two changes at once. And that could include stopping a medicine
and starting one and and and perhaps there's a side effect or they don't do as well with that change. Well, which
which change was it? Was it the stopping the medication or or starting the other one? I even like to have someone stop a
medicine, wait a week, and then start the new one, especially if I think that's going to be something that they can tolerate, just so we can always
judge that single drug effect. I think it's important to always reassess medicines and hold them if it's
not clear that they're having a benefit. And this is something that might even change as the disease progresses. Maybe
a medicine that had a positive effect early on doesn't have that effect later on and there might be some benefit to
holding it and really seeing if it's having that positive effect any longer or to see if it's potentially having a
negative effect such as increasing sedation where before it was it was needed to treat some other symptom.
Sometimes it can be as helpful to discontinue a medication as it can be to start a new one. That's called deprescribing. And then I think it's
also important just to look at a overall medication list and make sure that an individual doesn't start to uh have
polyfarm pharmacy have have multiple um drugs that are interacting in a way that's that's negative for them
overalls. So it goes back to the second to last point there which is we should always reassess whether medicine is
important. I think another important thing to keep in mind is to keep an updated medication
list. Hopefully medications get to a point sometimes where there's stability
for a year or maybe even longer uh once you figure out the the optimal regimen.
But there can be periods of time where there's a lot of medications happening because of symptoms that we're trying to address. And uh because of that and
because people often see multiple providers, it can be helpful to keep an updated list that includes the drugs uh
the doses that are taken, especially if they're different at different times of the day and then the times that the drugs are taken. And I think um not all
supplements and vitamins need to be on there or or if they are on there, maybe they can be pulled out from the prescription medicines, but some
overthec counters are important. So they should be listed somewhere. This can be helpful to have for
outpatient appointments. That's where I work primarily, but it can also be important if an individual has to end up
going to another provider or to an ER because of some es issue and certainly if they're hospitalized. And I I would
say the same would be if someone was going to enter a facility for any any reason. Maybe they were in the hospital,
but then they were moved to to rehab until they until they were able to go home. All of those places are um
transfer points where a medication might be dropped or might be changed when that wasn't the intention.
I think it's important in talking to a provider to always know what symptom is being treated. Hopefully, it's the most
important symptom at that time or one of the more important symptoms. Uh it's a fair question to ask to know exactly
what symptom is being addressed by the the treatment change and then along with
that how you're going to determine success. So, it's very easy sometimes someone's having falls. we want to
increase their Parkinson's medicine to try to address the Parkinson's symptoms part of this reduction in falls is an
easy thing to measure. It's not always easy to measure in other symptom areas that you're having a success from the
treatment you're using. And then how long should you expect a treatment to work or not? It's a question I do get
asked from time to time and I think it's a very fair one. The answer is often a week or two, but sometimes it's longer.
We don't know the full effect of a drug. sometimes for four or 6 weeks after after starting it. If it's not being
tolerated, of course, we might need to stop it before then, but to fully judge its effect, it may take longer.
As we get into the actual treatments we use for various symptoms, it's important to point out that there are very few FDA
approved treatments for Louisibody dementia. If we include uh Parkinson's
disease dementia, there are two drugs approved for Parkinson's disease dementia. Ripastigmine is one and what
often accompanies dementia psychosis visual hallucinations which we'll talk about pimancerin is approved there are
no approved treatments for dementia with louisi bodies therefore most of the medicines that we use and that I'll talk
about are off label uses of medications
this is available in the the notes and um it is called new evidence on the
manage management of louisi body dementia. This is a paper that was published in 2020 which is not that new
any longer but the medications and discussion in this paper are still very relevant today. I may talk about a
couple new things but in large part what I do speak about is is reflected in this paper.
Major symptoms in LBD
As we talk about the treatments the medication treatments specifically I als
I'm going to put that in the context of what symptoms are usually being targeted by those treatments. And I have these
grouped roughly by neuroscsychiatric symptoms which includes cognitive impairment or dementia with some
psychiatric symptoms. Second group are sleep disorders. RBD stands for REM
sleep behavior disorder which we'll talk about specifically. There are symptoms that result from impairment of the
autonomic nervous system and those include urinary symptoms orthostatic
hypotension or drops in blood pressure withstanding constipation and then lastly parkinsonism which are the motor
symptoms of Parkinson's including potentially tremor slowing down rigidity.
This is the only area where I'm going to uh spend probably the most time uh dementia because it is a core part of of
Louisibody dementia. And I'm going to dig a little deeper than I do in other areas and get to really what one of the
causes of the dementia is. Uh first to define dementia, it's cognitive impairment resulting in impairment in
daily activities. You know, short of that impairment in daily activities, it meets uh criteria for mild cognitive
impairment. So if an area an individual has cognitive impairment impairing their
daily activities that that's what meets uh the definition of of dementia in dementia with Louis bodies Louis body
dementia there is usually more prominent impairment in the areas of executive function. So an individual's ability to
plan u to do tasks with multiple sequence of of subtasks and to um to to
to just go about their daily schedule. Um it can Loui dementia is also
associated with impairment in attention and visual spatial function. A major contributor to the cognitive impairment
in Louis dementia not the only one but a major one that we can target with medications is a degeneration of part of
the brain called the basil in the basil forbrain which produces a chemical called
acetylcholine. And this little region of the brain is responsible for innervating
the rest of the brain and and uh delivering acetylcholine. And so if you you have loss of this area of the brain,
you have a reduction in acetylcholine in the brain. And we have some drugs that can help to
increase acetylcholine in the brain. And these are called colonsterase inhibitors. And they do this by
inhibiting the breakdown of acetylcholine. There's three drugs in this class. Rivstigmine, dinepazil, and
galantamine here and in other places I'll have the the generic name which I'll tend to use
but in parenthesis I'll have the brand name. So here's exalon is for ribostigmine. Aerosep for deneazil which
of of course is sometimes the way people know these medications. These medicines aren't perfect but they
can improve cognition and especially attention and sometimes the effect is is
quite noticeable quite beneficial. uh not always but but but enough that it's certainly worth uh trying this this
group of medications. To just quickly review there there is data supporting the use of rivistigmine for Parkinson's
disease dementia and that that is approved by the FDA. There is a number of studies supporting its use deneazil's
use in louisibody dementia. It's not approved by the FDA but we still have good level of evidence for that.
Galantamine is in the same class has less studies to support it. uh it's believed to be as helpful but we don't
have the studies that tell us that but this class of of drugs is uh is very
important uh to think about first with Louis body dementia uh getting a little bit into the granular details of these
medicines they they do come in different uh amounts and uh there's an oral form
for the riv stigmine and there's also a patch form uh for the denpasil there's
an oral form that's daily and then for the galantamine there there's uh an immediate release and the pro extended
release oral form. So there's some advantages of of these uh three medicines uh you know over the others.
So the rivstigmine the advantage is that there's a transdermal patch form that
can greatly reduce some of the GI side effects and this is a patch that's put on every 24 hours or for 24 hours then
removed then another patch is put on. So it's different than an oral medication. The nepazil the advantage is that it's
once a day easil easily titrated. So you go 5 milligrams, 10 milligrams and sometimes higher. Galantamine has the
potential advantage that in addition to being a colon eststerase inhibitor, it might stimulate some of the
acetylcholine receptors directly in the brain.
It's important to talk about the main side effects of these drugs. So uh with colonerase inhibitors the most
frequently encountered side effects are GI side effects which may um manifest as
nausea, vomiting, diarrhea and potentially even loss of appetite and weight loss if it's not asked or not put
together that these drugs are actually causing that. Another important one to to recognize that fortunately less
people deal with is a low heart rate. This is really only an issue if someone has a low heart rate to begin with.
Perhaps because they they were a regular runner during life and they've they've still have a low heart rate. Perhaps
there's a cardiac reason. So if someone has a low heart rate, I use these drugs very cautiously. Uh potentially involve
a cardiologist because these drugs can be helpful. If one is not helpful, then it's important
to try another. And if one is causing side effects, it's important to try another and maybe a different form. So I
already mentioned the patch might avoid GI side effects that someone had with denpasil or glantamine for example. And
then the last point I'll make about this is to optimize dosing. So in bold I've
put all the target doses for the typically used forms of these medicines. So 16 milligs extended release daily for
the galantamine, 9 and a half milligram patch for the rivstigmine and 10 milligrams for the dinepazil. There are
higher doses for all of those and if someone's had some benefit already, they might have more benefit with the higher
doses. They might also have more side effects. So, it's certainly something that needs to be done weighing the
benefits and side effects and and of course with uh communication with their provider.
Acetylcholine in the brain um you know is is important in in another way. So we
also have to consider medicines that block the effect of acetylcholine because individuals with louisibody
dementia might already have a deficit of or deficiency of acetylcholine in their
brain. Drugs that block acetylcholine can can cause very negative effects on
confusion and uh and even hallucinations. And these drugs that are
antiolinergic, block acetylcholine hide in a lot of areas uh in medicine and we
use them for a lot of different purposes. So they can be used in in psych psychiatry or for psychiatric
symptoms. They can be used to treat motor symptoms of Parkinson's, urinary symptoms, sleeps uh and even used in
anesthesia. So just to highlight a couple of these because they do come up in my later slides. Uh peroxitine is
paxel. It's a fairly commonly used anti-depressant. It also is anticolinergic. So if I encounter an
individual with Louisbody dementia who's on peroxitine, uh I try to switch them to an anti-depressant that does not have
that negative effect. Um in Parkinson's uh we we tend not to use these uh
medicines in Louisbody dementia, but but they should be avoided or taken off if if someone is on those. uh urological
medicines, you know, to treat overactive bladder, which is a symptom that we do deal with with Louisbody dementia. Uh a
lot of these medicines can worsen confusion and and cognition and not it's not always recognized that they'll
they'll do that. These don't necessarily come up in other places. So, I'll mention them again um
here and then once more because I think it's important. Dyenhydramine or benadryil is in some sleep
over-the-counter sleep aids and it is antiolinergic and can worsen confusion. So it's important to to look at the
ingredients, consult with your doctor if you need to. Uh another drug that's used as a sleep aid over the counter is
unisome which has dxylamine in it which has the same negative effects. Scapalamine patch is sometimes used in
surgical uh anesthesia uh to treat nausea. It's um can also be used for
motion sickness. It is anticolinergic again can worsen confusion. Carbomasopene sometimes used for
seizures but can be used for pain syndromes. Uh just one of those I also like to recognize as potentially
anticolinergic. Um there's a very long list of these drugs and I can't if I put them all on a slide you couldn't read
it. So you can consult uh the antiolinergic cognitive burden scale.
There is an ACB calculator online that's very easy to use. Uh you just type in
the medicine. If it comes out with a score of two or three then it's considered definitely anticolinergic
could increase confusion especially Louisbody dementia and is something that you should talk to your provider about
uh whether that is is the uh the best medicine to to use for the the target
symptom that it's being used for. Uh don't change medicines without consulting with your provider. I I think
that's especially important in some of the areas we're talking about psychiatric for example and sometimes an
antiolinergic medication is the best option. It's it's you know we try other alternatives um but sometimes the
benefit of a medicine that we would otherwise want to avoid can exceed the risks. Uh so you know I it's a not trial
and error. I think it's important to go through the exercise of assessing whether someone needs to be on an
anticolinergic medicine and and sometimes it it does turn out that it is the best thing for them.
So, just to round out or finish up with a dementia treatment, uh you all may
have heard of a drug called meantine or nomena that's approved for moderate to severe Alzheimer's dementia. And I do
find patients that that are prescribed this. Sometimes I prescribe it myself uh for Louisbody dementia. It works very
differently than the colonestrase inhibitors. um it's called an NMDA
receptor antagonist and it has been studied in Louisbody dementia and the evidence is mixed meaning that there's
some studies showing benefit and some other studies showing that that it didn't have a a positive effect.
Importantly, it is generally safe. There's very little side effects associated with this drug. So, it is
something that could be uh considered. However, I would only try it after someone is on a colon eststerase
inhibitor and or maybe was not unable to tolerate any of them uh even after
multiple trials. Um so in large part in some I want to say that you could see it
as an add-on to a colonist inhibitor not not really as a replacement because it works differently and and we don't have
the evidence that it really helps. Now I'll talk about psychosis or psychotic symptoms. Uh the most common
psychotic symptom experienced by those with Louisbody dementia uh is visual hallucinations. And uh here's a picture
uh that demonstrates some of the things that people might might hallucinate. Um
not always distressing, but certainly can be. And uh when it is, we want to treat it. That's what I'll talk about.
Uh there can be other types of hallucinations. So people may hear things that aren't there. They could smell things. They could feel things on
their skin. Uh that could be accompanied by visual. uh which of course that could be distressing. And then there can also
be other psychotic symptoms, specifically delusions and uh these usually are bothersome because they can
impact care and impact the relationship with their their loved ones. They can become paranoid about people trying to
harm them. They can accuse their spouse or significant other of infidelity. Uh
they can think that their loved ones are imposters, which is, you know, can particularly be distressing. They might think that their home is not their home.
uh which also could be upsetting for someone. So uh certainly in that case uh there are symptoms there we would want
to treat if if they were occurring. You know one thing to to be mindful of with hallucinations uh and psychotic symptoms
is that if they occur rather rather acutely or seem to worsen rather suddenly that there may be some medical
issue going on. So the classic example is a urinary tract infection
that doesn't have symptoms related to the the urinary tract infection, but it but there are an there is an increase in
visual hallucinations that might be bothersome. And so in in that situation, it's important to do a workup that
includes your analysis, maybe looking for other infections. um perhaps based on the the person's symptoms and and
exam you might even do other evaluations and uh labs would be included in that just to make sure that there's no
electrolyte disturbance that's that's contributing. I think it's also important to look at what's happened on their medication front. Have they been
put on an antiolinergic medicine that's now all of a sudden causing hallucinations?
Um perhaps they have developed some kidney issues and they're not clearing the drug that before they tolerated but
now is causing hallucinations. So very important to look at the the overall medical and medication situation to
start with. And I already sort of mentioned that you really need to determine probably you've already done
this whether the the hallucinations are bad enough to treat. Uh I think because
of the risk of some of the drugs we're going to talk about, it's probably best to treat someone when they really are
being bothered by the symptoms just to offset uh the risk of of some of these drugs. Dopamine, dopamine medications,
dopamineergic medications can contribute to hallucinations, especially dopamine agonist. And so we often try to reduce
medicines if possible if someone is having worsening of their hallucinations. Colon eststerase
inhibitors which I discussed at length there with dementia can be helpful for hallucinations and so should be uh
considered in someone especially if they have dementia and they're not already on that that medication. And after all of
that, if they're already on the colonist inhibitor and they couldn't tolerate it, you've you've ruled out everything else,
then we do have three medications, atypical antiscychotics that uh do not
block dopamine and and thus don't worsen Parkinson symptoms and usually are are active at a receptor called 5HT2A.
Uh as a class, all of these antiscychotics are associated with increased mortality. that could be
related to the fact that they're used in individuals that are having more advanced symptoms. Um, but it does seem
like there is some increased risk. So that's why we don't use these medications lightly. But certainly when
someone is having distressing hallucinations, we don't want them to suffer from those. So we do have medications available. Uh, moving
through the medicines, there's pimancerin, clausipene, and quitapene. Pimancer is approved for the treatment
of PD psychosis. It is a very selective uh drug. It doesn't have a lot of side
effects. Uh it is helpful. Um sometimes, you know, might might be uh difficult to
get through through insurance, but there's uh it is it is a helpful drug if if someone can obtain that. Uh
Clausipene is another option. It it is a helpful drug. It's been found to be useful, but it does require weekly
monitoring of the the blood with with CBC's to determine that there's not a side effect related to the drug. And the
quitapene does not have as good evidence as the other two drugs, but we use it frequently because it's easy to acquire
and prescribe and and try um and sometimes can be effective. Uh both
Clausipine and quitine do have an antiolinergic effect. Uh it's not the the way that they work, but it's just
something to note that we try to avoid these drugs, but sometimes we're we're really required to use them because we don't have many other options.
When we talk about psychosis, I think it's just as important to talk about all the treatments you would want to avoid.
And this is usually not something that a neurologist uh would do or even a psychiatrist, but you know uh that is
use drugs that might actually worsen some of the Louisbody dementia symptoms of cognition and and Parkinsonism.
uh the medicines that you know might be used include how doll or halloperadol
and I'm thinking about you know in the ER uh you know to treat someone who's having agitation acutely you might have
a drug like this used that would cause significant worsening of someone's uh louisibody symptoms and there's a a
number of that's the typical antisycchotic most often used in that scenario and then there are some atypical antiscychotics that uh can also
be used to treat hallucinations s and they may be helpful for psychosis. They just may worsen some of those other
other symptoms. Uh at the bottom here, I've put an asterisk by aeroprizole and
brexiprazole. uh if someone has failed those three drugs on the prior slide, they're still
they either haven't worked, they've had side effects, then I will sometimes very rarely use aiprizole which has some
dopamine uh negative dopamine effect but less than some of the other drugs. So, so they could be used in some rare
circumstances. Moving on to depression.
uh this is a uh symptom more common in Louisibody dementia. The uh symptoms may
not always be easy to differentiate from some of the other symptoms occurring in Louisbody dementia. So if an individual
is having fatigue, poor concentration, low motivation, sleep and appetite changes that could be a symptom of their
depression and not just their Louisbody disease. So it is important to identify whether someone has depression going on
as well because we would treat it differently and it might respond to that treatment. It may come along with
irritability which can be a common symptom with with Louisbody dementia. I think an easy symptom to identify is if
someone's having tearfulness and crying episodes that that usually does indicate depression that we would want to treat.
Um depression of course can lead to isolation, reduced quality of life and so it is important to recognize and
treat. Uh here is a perfect example of an area where we borrow medications from uh other from psychiatry to to treat
this depression. Um you know the SSRIs can be very helpful especially if
someone is also anxious or irritable and these are the standard ones that that we tend to use. Certillene, fluoxitine,
satalopram and esatalopramg. The uh snri uh venlaxines especially is more
activating. So if someone is you know more depressed not you know less anxious you know maybe has um even some level of
u apathy or anhidonia not enjoying activities might be more appropriate
I've already mentioned it but I'll reiterate it here peroxitine or paxel is a drug you'd want to avoid because of
its antiolinergic effect and there absolutely can be a role for psychotherapies especially in someone
able to participate so uh I do want to through some of these coming slides uh
you not only talk about medications but I'll just briefly mention that there are the non uh pharmarmacological treatments
anxiety is also more common in in Louis dementia can be along come along with the depression uh this may show up as
excessive worry fear of being alone and could even be uh uh to the level of a panic attack in some individuals
it's important to recognize anxiety could be related to wearing off um distress from hallucinations episodes of
low blood pressure that an individual might feel those anxiety, you'd want to treat all of those things differently.
So anxiety may not just be a psychiatric symptom. It could be a symptom of something else. And when I talk about
Treatment of anxiety in LBD
wearing off, I mean wearing off from Parkinson's motor symptoms. I'm going to talk about that specifically at the end.
Treatment of anxiety is is similar to that for depression. We use the same SSRIs and and tend to use those over the
SNRIs. Uh the same ones I I mentioned earlier. Booerone is an an add-on
frequently to an SSRI specifically for anxiety and that can be very helpful for
some individuals. If we don't get any traction with those those medicines, we do rarely use
bzzoazipines or I have patients treated with these by other providers. Those include I'll use the more commonly used
name here Xanax, Adavan or Clonopen. Um the generics are there as well. uh
medicines are quite good for treating anxiety. And so if someone is really suffering, we've had no ability to treat
them with the other medicines or they've had you know no improvement, we may have to use these medicines. However, we
absolutely try to avoid using them because they can worsen cognition, worsen fall risk. So uh a and there's
also always the problem of these medicines working and then their dose needing to be increased to maintain that
benefit. So that that can be a challenge. Using these as needed for very r rare circumstances is something
where they they retain their their benefit uh as long as you you sort of guard against the side effects and again
there can be a role for psychotherapy. Uh apathy is is the last in these sort
of trio of of psychiatric symptoms. Depression, anxiety and apathy. It is the the loss of interest and motivation
that is separate from what might occur with depression. uh again so independent of something called anhidonia which is
loss of interest in and activities uh it leads to less interaction less physical activity which are both both obviously
important for an individual with blue body dementia so we we want to treat it if we can however we don't have great
great treatments for for apathy um there is one medicine we that that has some
evidence it was a study in Parkinson's disease patients without depression and without dementia and exalon or riving
shown to help apathy and Louis by dementia I think have already made the case that colon eststerase inhibitors
should be used and so they could they could help that symptom as well. Uh there are other things though that you
might want to look at like sleep uh depression uh reducing sedating
medications in someone with apathy. So so we again that's this idea that removing medicines or or treating other
things uh might might help this symptom. Early on I mentioned REM sleep behavior disorder abbreviated as RBD. It's a core
clinical feature of dementia with Louis bodies and we see it with with Parkinson's disease dementia. And what
it is is the loss of paralysis during dreaming and this results in individuals
acting out their dreams, punching, kicking, talking and yelling. Um they can sometimes injure themselves if they
fall out of bed. They can injure a bed partner. It is best diagnosed with a sleep study. uh if available if not you
know in the right clinical setting uh it is a frequent symptom of of Louis body dementia so we can often try to treat it
if we're not able to to get that immediate uh best diagnosis uh the figure on the bottom is showing cycling
of of sleep over the night and that blue on the top is REM sleep that's dream
sleep and as you can see over the course of the night the the REM sleep increases
uh in the amount that you're having and uh that's frequently why you wake up dreaming, but you wouldn't have that if
you woke up in the middle of the night. Um that's when people are more likely to have this acting out of dreams when
they're having the REM sleep. So it's usually in the second half of the sleep that that these these movements are more likely to happen. Very important to not
just attribute it to to the REM sleep behavior disorder. If someone is having abnormal movements, they could have
sleep apnnea resulting in awakenings in movement. They could have periodic movements of sleep frequently associated
with restless leg syndrome. They could have confusional awakenings. Treatment for this if it's bothersome is
um to uh well certainly if it could lead to injury, we want to modify the bedroom, not have sharp corners next to
their bed. Maybe use bed rails that are padded. Have the bed low so they don't fall out and injure themselves. Um, it
might involve people sleeping in separate beds just to to avoid some of those that activity uh harming someone
else. Melatonin can be helpful in the hour before sleep. You could start at 3
millig and move it up to 12 to 15 milligrams at bedtime. This can reduce some of those those acting out of
dreams. And for people that don't respond to that and do have very bothersome uh dream enactment, uh
benzoazipines can be useful. So that's clinazipam usually or maybe one of the shorter acting ones. When I spoke about
anxiety, I was already mentioning we want to try to avoid these these medicines if possible. Again, this is
this is one of those situations where you really have to balance the potential benefit reducing these acting out of
dreams that could be bothersome, you know, with the potential downside.
Insomnia is a common uh symptom in in Louisbody dementia and this could be difficulty with sleep onset but more
often than that there's a uh difficulty with sleep maintenance where people have difficulty uh falling back to sleep
after awakening. Always good to check sleep hygiene
recommendations. This is just some of them. The things you should do that can help with sleep at night and the things
not to do. Uh each of them on their own seem like common sense. How could they
have a big effect? I think it's all of them together that can sometimes have an effect. Uh I'll also say that, you know,
throughout someone's life, they may never have had to think about any of these things, but when they have Louisbody dementia, you know, all of
these um good healthy sleep habits may become more important.
So after all those sleep hygiene uh recommendations are checked off and and
make sure someone's doing that, you you would want to treat insomnia by looking at any contributing factors. Uh mood
disorders, hallucinations, restless legs, pain, uh wearing off of of from their leodopa if they they were
fluctuating. Uh you'd want to treat sleep apnea if that was present. I think that's uh you know it's a common thing.
It's not necessarily more common in Louis by dementia, but it is common uh in general. And so if someone has risk
factors for that, it's very reasonable to treat because sleep apnea untreated can contribute to cognitive impairment.
So you wouldn't want that to be part of the situation. Melatonin can help with sleep onset, not so much with sleep
maintenance. Uh you could use low doses of trazadone or mortazzipene, which are
both anti-depressants which have sort of been adopted to be used as sleep aids. uh they seem to they overall are less
sedating than some of these other drugs we really should try to avoid such as uh benzo like clonopin or what are called z
drugs the most common being ambient uh zulpa named because of the the first letter in the generics
uh benadryil is in a lot of sleep aids over the counter like Tylenol PM again I'm reiterating here uh this these two
meds and why to avoid them but uh they may be want they may be used for sleep but they could have negative effects on
on cognition and balance. A uh a symptom that can be really
challenging in in Louis body dementia is excessive daytime sleepiness. Uh it's very common. It co-occurs with uh
cognitive fluctuations uh sometimes and uh we don't have a lot of uh go-to
treatments although we we do try to use some things. I think first we want to optimize sleep if it's happening uh you
know if someone's had disrupted sleep at night. We want to limit sedating medications during the day if possible.
Again, we don't want to miss obstructive sleep apnea. And then we would potentially use an more activating
anti-depressant. Uh if they're on one, we could switch to that or or not. We could try it. Uh stimulants uh can
sometimes be useful, although they they they might worsen agitation uh and disrupt sleep at night. So they they
definitely should be used with caution. Yeah. over the two drugs that are at the bottom. Methylenadate probably would be
the one to use because it has such a short half-life, but again, it it needs to be used um with caution.
Next, I'll talk about autonomic symptoms. So, the the autonomic system is a system of nerves through the body
that control all of our automatic functions. And it's split up into the sympathetic autonomic system and the
parasympathetic. And as you can see from this list, it controls bodily functions uh throughout from uh pupils dilating
and constricting to our our urinary uh and bowel control. And uh the autonomic
symptom is impacted by Louisibody dementia. And so you can have symptoms related to that dysfunction. I'll talk
about some of the the major ones, but it can affect a lot of other areas as well. So constipation is a common one of those
uh symptoms associated with autonomic dysfunction. I'll start by saying what we should
avoid. Those anticolinergic medications can certainly cause constipation.
You also would want to ensure that someone is hydrated and getting physical activity as much as able and is safe.
And then diet can be a really useful way to treat constipation. So probiotics that contain live cultures uh can be
useful that could be obtained through through yogurt potentially uh but there's a lot of over-the-c counter
options. uh prebiotic fiber can be useful and uh and then after that
cholease or docusate uh is a stool softener that can be taken one up to three times a day and then uh
polyethylene glycol which is mirillax which can be titrated could be taken uh
daily discuss with your provider if that's something that that that would be safe for you but but for some patients
with real chronic constipation in Louis by dementia they really do need daily mirillax to to uh to to maintain
regularity of of bowel movements and and then after that there you know sometimes I I work with GI doctors who might try
some of these prescription drugs for for really difficult to treat constipation
orthostatic hypotension is a drop in blood pressure withstanding uh that's
common in Louisbody dementia can lead to passing out and falls at its worst but even just lightheadedness and confusion
uh if it doesn't get to that point the way to assess it is to take the blood pressure and heart rate when lying down
for 5 minutes and then to take it with standing and 3 minutes after standing. And it's what the heart rate and blood
pressure do uh are helpful for the providers to know what's going on. Uh we can do this in the office. Sometimes
it's nice to to have some spot readings from home. Um so you know when to be
concerned. Uh the bottom line is you you'd want to be concerned if there's any drop uh of 20 or more because it
could indicate that an individual at at other times maybe when they're starting at a lower blood pressure and have that
drop could be at risk of passing out and falling and and you know injury potentially from that. So um you know
the bottom one looks like it's it's okay. They 150 is a little high u but they drop to 125 probably fine. You know
that's a normal blood pressure. they're they're feeling fine, but that individual will be risk for potentially
dropping from, you know, 100 over 60 sometimes to to to something much lower
that would be a concerning blood pressure. We do have a lot of ways to treat this
when it happens and usually people do respond to treatments that don't require us to use medications, but I do list
them here. So, first of all, you just want to make sure someone's not on an anti-hypertensive that they don't need
any longer. maybe we need to take them off of medicine. Uh they they no longer need to treat their blood pressure. So
that that involves coordination with primary doctors or cardiologists. Uh there's a role for support stockings
above the knees. Those can raise blood pressure when someone stands up. Uh abdominal binders uh can be used
sometimes. Usually it's the support stockings. And and then increasing fluid intake very important as we move into
the hotter months. Um but also increasing salt and electrolytes. So, you don't want to just restore the fluid
you've lost, but to sometimes restore the electrolytes. And there are a lot of options now for electrolyte mixes that
can be added to water um that don't necessarily involve uh the sugar of of some prior uh drinks. And if that
doesn't work, then we can use some medicines that boost the blood pressure. Uh fludrocortisone, puristic are
options. Uh the bottom three are are certainly options that can work. I would use those all individually at the bottom
uh because they can all cause someone to have elevated blood pressure especially when lying down and elevated blood
pressure on its can have its its downsides. So we want to use those medicines if we need to but we want to
definitely uh balance it against the risk of of potentially having too high blood pressure.
For the urinary symptoms uh there are some non-medication options. uh just
scheduling when that someone would go to the bathroom might help that frequency and urgency before it occurs. Stopping
fluid intake in the early evening could avoid some of the awakenings at night to to go to the bathroom. Pelvic floor
therapy can be useful. Uh antiolinergic medications which I talked about at the beginning uh should be avoided in large
part except for one exception. There's a medicine called tropeium or sanctura which is anticolinergic and can help
these symptoms of urgency and frequency u and but it doesn't cause the negative
cognitive side effects because it doesn't cross from the blood into the brain. So we could use that one. Uh
there are two drugs mirroron and viebegron which have a different mechanism and both both can be helpful
for patients and really refractory cases botox can actually be help for an overactive bladder.
Now moving into Parkinsonism. So this is a core feature of of dementia with Louis bodies marked by slowness, stiffness and
and tremor. And we do have uh medicines to help that. The primary treatment is
leodopa. There are a lot of different forms of leodopa. I'm giving the the main one here. Carbodopa levodopa 25100.
The 100 is the levodopa. That's the active drug. uh of all the things we have to use uh all the things we have
that treat Parkinson's Levodopa is the one with that's most effective and the least side effects and I I would say
that even to someone with Parkinson's disease it's even more important in Louisbody dementia because a lot of those other treatments have more side
effects especially as it relates to cognition and some of the other symptoms someone with Louisbody dementia might
have if someone doesn't tolerate leodopa but could potentially benefit there are ways
to get them to tolerate it and we and try different forms, try different tricks we have to to uh increase slowly
and make sure that they they do tolerate it if they're going to benefit. However, we do have some limitation in how high
we can sometimes push the dose because of some of the other symptoms they might have. I've already mentioned this, but
just to say it again, we want to avoid some of the medicines that might be used for Parkinson's symptoms otherwise because they might have more side
effects with Louisbody dementia. Those include drugs uh called trihexopenadil,
amantadine and dopamine agonist. Those include ropenol and pramipexel and
there's absolutely a role for these therapies in uh treatment of motor symptoms.
Some individuals with louisibody dementia especially those that have Parkinson's disease and later develop dementia may have fluctuations related
to the dosing of their leodopa. And we often think about motor fluctuations. So
when the medicine's working, their tremor's gone, the tremor comes back. That's usually because they need to be
redosed with the medicine. But some individuals can actually have non-motor symptoms that are worsened when the
medicine wears off. So they might become more depressed or more anxious or more confused, more bladder symptoms, more
pain. And all of those non-motor symptoms could be addressed by just getting them on a different form of
medicine that that helps um bridge the gaps between the doses.
Sleep is is another one. If someone's wearing off at night, that could disrupt sleep. We might be able to use a long
form of leodopa that could that could help them in the evening. So, I'll leave uh here as we kind of
start wrapping up about how we balance these medication effects. I I think as we've gone through this, you've heard me
say, well, here's a medicine that helps this symptom, but it potentially worsens this symptom, which might limit what we
can do with it. That is one of the challenges that you know any any provider in this area faces. It's a
challenge for the the patients and their families as well. Uh to give some more common examples you know leodopa can
improve motor symptoms but it could worsen visual hallucinations or it could worsen the blood pressure issues that we
might see. Uh it also in some people could increase their sleepiness their impulsivity at higher doses. Maybe they
even become overactivated when they're on higher doses of lepodopa. something important to recognize so that we could
address it. Uh antiscychotics can improve the psychotic symptoms, but they could worsen Parkinsonism except
potentially for those three drugs that uh we use most often. And antisycchotics
can increase sedation of falls. I talked a lot about benzoazipines where they might be helpful, but we really are very
careful about using them because of their downsides. And then some of those urological medicines might get added um to help
with the urgency and frequency and overactive bladder. They could worsen cognition and constipation. So some are
better than others in that area. So outside of all of those um medicines
I've talked about, there are some other medicines you might want to avoid or limit taking. So antibiotics might be
necessary to treat a urinary tract infection for example. But one of the medicines, cyproloxicin or other drugs
in this family could increase confusion. So, it's the one antibiotic that I I would be leerary about uh taking unless
it's it's really necessary and there aren't any other alternatives, but it's just something to be aware of. Uh pain
medicines are potentially necessary. I I don't want to, you know, have anyone suffer from pain, but I also think we need to
always assess that they're not being overtreated because of the the risk for increased confusion and fall risk. So,
you know, with opioids, uh, especially, we need to always reassess that that they're on an appropriate dose for them.
Gabapentin, uh, can be a very good medicine, but it could worsen confusion. You know, might just be an issue of
dosing. Maybe someone can get a get away with a lower dose as whereas before they needed something higher. Uh, surgery is
a an issue that frequently comes up. You know, we of course want people to avoid
surgery if they they can. I think anybody would but sometimes surgery is really the only uh is is necessary and
uh I you know I can think of examples where someone has you know severe knee arthritis it's limiting their mobility
they're in a lot of pain uh you know there really is no other treatment other than a knee replacement. Fortunately a
lot of these types of surgeries can be done in less invasive ways. Um but of course there's always that risk that
someone with Louisbody dementia might have increased delirium and confusion related to the surgery and anesthesia
and recovery. So um if it's necessary you know talking to the anesthesiologist
and surgeon ahead of time to use as as minimal anesthesia as as necessary while
still treating the patients uh pain of course during during the operation. No
scopalamine patches for nausea. use some alternative that doesn't worsen confusion. And then I al often advise
people to request an early or first surgery of the day if possible to reduce the time that they go without food and
without their medications because uh sometimes surgery is if later in the day
someone's gone all day without their meds and their food and and they that they don't end up until they're in uh
until the evening when they're in posttop when they haven't had their medicines and they're more likely to be confused. So, you know, that that little
change might might reduce the risks associated with surgery.
I I said this at the very beginning, sometimes we might want to deprescribe a medicine to to actually stop it. So, the
uh it's important that we always reassess benefit. Uh we reduce duplication if someone's on a two drugs
to do the same thing. Uh we also don't want drugs to necessarily be in conflict. Uh sedating medicines can
accumulate and so we might want to target those first. Simplifying schedules can be helpful. And sometimes
goals of care evolve and so you know we might be more aggressive at at sometimes uh and take on the risk of a drug
whereas later it may not be uh worth that risk. So again always reasons to
assess medicines. Uh I think I've made these points throughout that there medications are not the only treatments.
This is a medication primarily uh a medication talk but uh there are a lot
of other ways that we can treat some of these symptoms and so I don't want to give those too short uh shrift.
Um before I hit the summary slide, you know, I do want to just say that, you
know, a lifestyle modification and in many ways can help someone with
Louisbody dementia. Uh this comes from a 2024 study that pulled together
aggregated all the data regarding how to reduce uh the risk for dementia. I think this is you know important for anyone
even with dementia that it might reduce progression of their dementia. So all of these things on the left are modifiable
risk factors that you know should be uh someone should be aware of uh you know
to to point out one preventing and addressing hearing loss. So that might be important uh because it improves
someone's uh social engagement uh they might even have less um they they might
have better mood uh if if they are able to hear and engage with the people around them. So some of these things uh
might seem like uh they're they're not going to have be that effective, but again altogether they might be helpful.
Summary
So in summary, there's a lot of medications used in Louisbody dementia that are off label. Uh treatment
decisions require balancing potential benefits and side effects. Start low and go slow, one medication change at a
time. Uh colon eststerius inhibitors are are a drug class that certainly should be tried and and optimized. Uh we should
avoid medications with antiolinergic effects and you can check those and talk to your doctors about it. Um, medication
regimens in general should be reassessed regularly. Things may not be necessary later that were once necessary. And then
lastly, partner closely with your providers and and maintain an updated medication list, especially for for
hospitalizations or ER visits. So, thank you for your attention
and a big thank you to you, Dr. Barrett for sharing your expertise and this very
important topic with our community. I see all the reactions coming in from our audience. Wonderful.
Yes. Nicely done. So comprehensive. Um
Q&A
yeah. Well, we had several questions coming in our Q&A. So I will start you
off with um more specifically we had a lot of specific medications. So one
being gabapentin and then another being diamond hydronate. Um can you speak a
little bit about not using them together but are they safe for this population?
Yeah so gabapentin I did uh you know maybe that came in before I mentioned it but it's worth mentioning again because it is a uh very commonly used medicine.
um it you know where it gets used mostly is um in the treatment of pain you
neuropathic pain and um it can be used for restless leg syndrome as well um the
you know I think it's always a balancing act so I mean you know if someone's having restless leg syndrome and
neuropathic pain and they're not sleeping at night you know gabapentin might be very helpful for them um you
know I had an individual early on with Louis body dementia uh in a few years that you know he had both of those
things and he did sleep better with gabapentin but even 100 milligrams caused uh greater confusion the next day
we actually ended up using an oral form of the medicine so he he could get 50 milligrams and that was enough to help
symptoms and it reduces side effects so that's a unusual circumstance but I I
guess the um takehome there is you know maybe you know the dosing of these medicines is something that we can
really modify to try to find that sweet spot where we're getting the benefit and reducing the risk as much as possible.
And then the other one, Diamond Hydronate. So, this is a um an antihistamine that's over-the-counter. I
don't, you know, I I it's not it's not typhen hydramine. Um I
don't think it's as antiolinergic as uh as benadryil is. Um I would have to
look. So, it's Dramamine. I mean, it's uh it probably has some antiolinergic effect, but not as bad. I you know I
think it's something that could be used sparingly. I mean I think just like benadryil I mean if someone is you know
suffering from cold symptoms and you know benadryil helps them you know taking that very infrequently you know
to treat those symptoms in and during that time you know might be worth the the the risks of taking it again taking
the lowest dose possible to start with. I think the problem really is if someone is taking Tylenol PM every night to
sleep you know that that additive effect is when I I would get concerned. I think the same with with something like uh
Diamond Hydronate. Thank you so much for clarifying that. Um, another question is when should you
try a med again that maybe didn't work in the past? Any thoughts?
Great question. Uh, I think it depends on the adverse effect that you had. So,
let's you know, for example, uh, denpasil commonly used colonase inhibitor. You know, if somebody has uh
significant nausea with that drug, it's not a it's not something I would ever go
back to. It's very unlikely they wouldn't have nausea from that uh you know, in the future. But uh you know,
Leodopa is a drug that someone might not tolerate in the way because of the way it was titrated and I I might think
about using it again. Um I guess not an easy one-sizefits-all answer to this
question. I think it's uh you know depending you know it if it's reasonable
to retry drugs that that that didn't work in the past. I mean I think around sleep aids like trazadone um sometimes
it's not always clear what amount was used in the past and so maybe you know
in trying it again in the future we're going to you know use the lowest dose possible. I mean that's so getting to this idea that dose really matters might
might allow us to retry a drug uh that that in the past seemed to not work or or had side effects.
Thank you very much. Um all right and then a couple questions came in
regarding optimal timing to take certain meds. Um I believe you mentioned something on denapazil and maybe
suggesting that in the morning. Can you explain why timing would really matter for men? Yes.
Yeah. Yeah, denpil is a good example. Denezil was when it was developed, it was a nightly medicine and a lot of our
EMRs, electronic medical records will default to that being a nightly medication. Dene can disrupt sleep and
so I think it's better practice to use that medicine in the morning if you're if you are taking it. Um I think that's
pro you know and and as a if there's any principle here for other medicines, I think timing can matter how it affects
sleep um or sedation for that matter. I mean you might want to take a medicine in the evening if it has you know should
be a daily medicine but happens to be a little more sedating for that person. So uh I think if there's anything that kind
of affects when a once a day medicine is taken it's probably probably related to
its sedating properties if anything. Thank you for that point. And on that, just after you mentioned could have
sedating properties, a question came in on Adavan and um their loved one was on this and they're noticing more naps,
more sleepiness and if the care team should maybe re-evaluate. Yeah. So Adavan is larazzopan. It's it's
in that category of benzoazipines and I think it's um so why why might it
get used? It might get used to treat you know severe anxiety uh you know to the to the to the degree of panic attacks.
Uh it could get used to uh treat um
REM sleep behavior disorder potentially obviously not if it's being given during the daytime could be used you know
rarely to treat agitation. Uh it is um yeah it can it can be a sedating
medicine. I think that's always, you know, when agitation is is the symptom we're targeting, that's always the risk or concern with these medicines is try
to use the least sedating options. Uh, Adavan is one of the more sedating. You know, I I think it's, you know, dose the
dose and the amount is probably what I would look at first. So maybe there there was some initial benefit from the
medicine, but it's just more than this person, you know, needs. Uh, you can you can usually get the dose down to a
quarter milligram a day. It's harder and maybe if if you know they the Adavan's
helpful but any dose is too sedating, you know, one of the other benzoazipines could be used that's shorter acting and
and potentially allows even lower dosing. So a we'll need to really check these
medications regularly just to see which ones we can titrate or which ones um to adjust.
Exactly. And that can change and and that in the reassess because a year down the road the effect may be very
different. Yeah, good point. Good point. Thank you. Um, any recommendations for excessive
drooling? Yes. So, that I did not address in the autonomic symptom section, but that's
usually where it follows. So, um,
what I like to use here is uh what I what I like not to use is Robinol, which is a drug that is antiolinergic, but
doesn't get into the brain. So, it is a potentially used. The problem is is that it has negative effects on uh it can
worsen constipation quite severely. So we really don't have use of that medicine whereas we might use it in
other areas of neurology. That's an oral pill. Um you know as a um
you know short of of things people have probably already tried like you know lemon drop candies or you know other things that might might help excessive
saliva. Sometimes uh using borrowing medicines that can be either eye drops or intraasal uh atropene or epotroprium
that's administered under the tongue can sometimes dry out some of that excess saliva. Uh those are anticolinergic
drugs but they're delivered just locally. So usually don't have systemic effects and can be helpful because the
next option is Botox or myobblock which is a different brand name of Botox. Uh
that can be quite effective. um requires just you know four small injections uh
every 3 months. So you know there there is the need to keep doing it but that is a a potentially very useful option if
someone is really struggling with that symptom. Thank you. Yeah, as an occupational therapist I would often do sugar-free
candy, you know, just to kind of get That's right. mechanism. Exactly. Lemon drops, too. So
Yep. No, sugar-free candy is good. Um another question. We're going to keep them rolling. if you're doing okay. Um
do you have any suggestions for anosia? So that inability to recognize one's own medical condition, needs, illness and
then in relation to meds. So that can be tricky that can be very tricky and I I did not
address that. So yeah, I define it just lack of awareness. So an individual you
know having lack of awareness of their own of their own deficits and their own uh you know difficulties especially
around cognition and I mean hallucinations is common where people may not have insight and so then they
don't uh don't really need see the need sometimes to take those medicines that might help them. Um
I think it's you know it's hard to give recommendations around this because every this is where the individual is is
become so important and so um I'm going to give this as an anecdote but I think
you know for one individual uh doing some diagnostic testing that allowed
allowed us to be very clear that they had Louisibody disease. We did one of the the new biomarker tests, you know,
help this person to to buy in to their diagnosis that they okay, they do have
Louis bodies, you know, I can see them, you know, I, you know, I see the results here and because of that, okay, I I'm
willing to to take a treatment that is pretty standard for this for this disease. So, that's one scenario. Um,
you know, that person just needed a little more evidence. That that that may not always be the case. Um I uh you know
trying to figure out if there's a symptom that maybe is more bothersome to the patient that you're addressing
rather than than the ones that they don't think they have. So you know someone might not have insight into
their hallucinations but they they might admit that the hallucinations bother them or what they're seeing is bothering
them and distressing. And so in that situation I would say let's let's we're going to treat you because we might not
make these go away. That's not my goal. My goal is that you're not as bothered by what's happening. And so, you know,
maybe reframing what you're actually trying to treat could could be useful. Yeah. Finding what's important to the
personalized care. Yeah, absolutely. Um, a couple more before we conclude.
So, this next one, um, a love someone's loved one had passed away, you know, 10
a decade ago. Um, and so now you were speaking about how treatment, approved
treatment is really off label and that really still shocked these some individuals. U could you speak about
like why and any theories of why that's still the case in 2026. That's a great it's
it's not for lack of trying. I think you know there have been a number of clinical trials since then you know in the last 10 years to to uh try to
identify treatments either specifically for some of the Louisbody dementia um
symptoms or for uh slowing down the disease and um you know until recently
you know any any approved drugs that slowed down Alzheimer's were even were weren't available that's you know
changed in the last few years um so I think we're starting to get traction the these are just you know have been very
difficult diseases to to measure and then uh you know to measure improvement and you know target drugs to to slow
them down. So I think that's where we might see a drug that that targets um
you know slowing down the disease and then related to symptoms I think you know there is a lot of overlap with the
symptoms of Louis by dementia that happen in other dementias Alzheimer's is much more common um and so you know I
think we things don't get tested specifically in Louisbody dementia although they might be relevant and and come from other areas so you know there
are new yes new drugs have come out that I think you know we can make use of I didn't mention you know there are these
uh new sleep aids called uh dual ereexen uh receptor antagonist that might be
useful in Louis body dementia. I use them sometimes. They haven't been tested specifically in Louis body dementia, but
they're new that they're available for us to use. So things are changing. It's just, you know, uh there's multiple
reasons that we haven't seen those new drugs for for Louisbody dementia. Yeah. Yeah. And I think there's so much
on the horizon and really really soon down the pipeline. Um so that's exciting
to see even with last year I feel like there was a large increase in number of studies and every year we we were
increasing so right not for lack of trying to quote you that was perfect
um and then one of our last questions would be now if you would give our audience any advice if someone's trying
to prioritize managing their meds with their care team maybe a little overwhelmed unsure of where to start
what strategies or solutions as a provider um could be really beneficial to start
this and kind of guide the conversation with families. Yeah, I think um you know just first
making sure that it's clear what each medicine is for. I mean that sounds so elementary but you know sometimes a
medicine is added two years prior and it just stayed on the list. And so um you
know what are they for today? I think it's you know important place to to start and and then um you know what's
what is what's most important to the the individual with Louis body dimension
their their family members uh and what's bo what's bothering them the most I I do often ask that question when it seems
like we're you know dealing with multiple symptoms and that we want to address all of them but you know what's
what's most important what's bothering you the most and I think that can help um kind of organize an approach to the
medication list. Okay. Well, you know, so it's cognition. All right. Well, are you on a colonist inhibitor? Are you
certainly off anticolinergics? Maybe we should think about meantine. You know, oh, this drug could actually gabapentin.
Maybe that's, you know, we we need to look at the dosing of that. So, what's bothering the most might kind of frame
how we look at look at all the medicines on that list. Prioritizing, writing them down.
Absolutely. Um, I know LBDA we have a symptoms checklist. So print out and kind of take
part of what's going on um to help guide Yeah. show the doctor what's most troublesome.
Absolutely. Yeah. Prioritizing is the perfect word for it. Awesome. Well, Dr. Barrett, thank you
again so much for your time and for your presentation today is truly valuable.
So, thank you. You're welcome. Thank you. Thank you. All right, folks. Yeah. Any last
reactions for Dr. Barrett? Oh, wonderful.
Okay, so we hope that you'll join us on June 24th for strategies for support and
transfer techniques with our physical therapist Heather Ciance. Just a quick and gentle reminder that you'll receive
a follow-up email from LBDA in about one week with the presentation recording,
handouts, and resources we discussed today. And then before you go, please take a moment to complete our very short
survey. This will launch on your screen when the webinar ends. So lastly, thank you to our audience for your time and
your engagement today. Keep learning, stay connected, and know we're here to support you along every step of the way.
See you next month.
===
루이소체 치매(LBD)의 약물 치료에 관한 웹 세미나 요약본이다
1. 개요 및 세미나 목적
발표자: 버지니아 커먼웰스 대학교(VCU) 신경과 교수 맷 배럿(Dr. Matt Barrett) 박사
주제: 루이소체 치매(LBD) 증상별 주요 사용 약물, 부작용 및 주의점, 피해야 할 약물, 안전한 약물 관리 전략
기본 원칙:
LBD 환자는 약물 민감성이 매우 높으므로 처방 시 저용량으로 시작해 천천히 증량하는 원칙(<Start go low, slow>)을 적용해야 함
. 부작용이나 효능 평가를 정확히 하기 위해 약물 변경은 한 번에 하나씩만 진행해야 함
. 효능이 불분명하거나 질병 진행에 따라 필요성이 없어진 약물은 감량 및 중단(Deprescribing)을 적극 고려해야 함
.
2. 주요 증상별 약물 치료 및 유의사항
(1) 인지기능 저하 및 치매 (Dementia)
원인: 기저전뇌(Basal forebrain)의 아세틸콜린(Acetylcholine) 분비 신경세포 손상이 주원인임
. 주요 처방: 콜린에스테라아제 억제제(Cholinesterase Inhibitors)
리바스티그민 (Rivastigmine / 브랜드명: Exelon): 패치 제형이 있어 소화기 부작용을 줄일 수 있음
. 도네페질 (Donepezil / 브랜드명: Aricept): 1일 1회 복용하며, 수면 장애를 피하기 위해 아침 복용이 권장됨
. 갈란타민 (Galantamine / 브랜드명: Razadyne): 1일 1회 서방형 제제 사용 가능
.
기타 약물: 메만틴(Memantine / 브랜드명: Namenda)은 콜린에스테라아제 억제제를 사용할 수 없거나 추가 치료가 필요할 때 고려할 수 있으나 임상 증거는 혼재되어 있음
. 부작용: 구토, 설사, 식욕 감퇴 등 소화기 증상 및 서맥(낮은 심박수)
.
(2) 정신증 및 환각 (Psychosis & Visual Hallucinations)
주의점: 급작스러운 환각 악화 시 유발 원인(방광염 등 감염, 전해질 이상, 항콜린성 약물 복용 여부)을 먼저 점검해야 함
. 사용 가능한 비전형 항정신병 약물:
피마반세린 (Pimavanserin / 브랜드명: Nuplazid): 파킨슨병 정신증 치료제로 FDA 승인을 받았으며 도파민을 블록하지 않아 안전성이 높음
. 클로자핀 (Clozapine): 효과적이나 정기적인 혈액 검사(CBC)가 필수적임
. 쿠에티아핀 (Quetiapine / 브랜드명: Seroquel): 임상 증거는 상대적으로 적으나 처방이 용이하여 자주 사용됨
.
절대 피해야 할 약물: 할로페리돌(Haloperidol / 브랜드명: Haldol) 등 전형 항정신병 약물은 파킨슨 증상 및 인지기능을 급격히 악화시키므로 사용을 금해야 함
.
(3) 수면 장애 (Sleep Disorders)
렘수면 행동장애 (RBD): 꿈속의 행동을 실제로 옮기는 증상
. 1차 치료: 취침 전 멜라토닌(Melatonin) 복용 (3mg~15mg)
. 2차 치료: 클로나제팜(Clonazepam) 등 벤조디아제핀계 약물을 고려할 수 있으나 인지 저하 및 낙상 위험에 주의해야 함
.
불면증 (Insomnia): 트라조돈(Trazodone)이나 미르타자핀(Mirtazapine) 저용량 사용
. 항히스타민계 수면유도제(Benadryl 등)는 피해야 함 . 주간 과다졸음 (Excessive Daytime Sleepiness): 메틸페니데이트(Methylphenidate) 등 자극제를 주의 깊게 고려할 수 있음
.
(4) 자율신경계 증상 (Autonomic Dysfunction)
기립성 저혈압 (Orthostatic Hypotension):
비약물적 요법: 수분 및 염분/전해질 섭취 증가, 압박 스타킹 및 복대 착용
. 약물 요법: 플루드로코티손(Fludrocortisone), 미도드린(Midodrine), 드록시도파(Droxidopa) 등을 사용하되 누운 자세에서의 고혈압 위험을 모니터링해야 함
.
변비 (Constipation):
유산균(Probiotics), 식이섬유, 도쿠세이트(Docusate), 미라랙스(Miralax / Polyethylene glycol) 매일 복용 고려
.
배뇨 장애 (Urinary Symptoms):
뇌로 전달되지 않는 항콜린제인 트로스피움(Trospium)이나 미라베그론(Mirabegron), 비베그론(Vibegron) 사용
. 중증의 경우 방광 보톡스 주사 고려 가능
.
침 흘림 (Excessive Drooling):
무설탕 사탕 이용, 아트로핀(Atropine) 설하 드롭 복용, 또는 보톡스(Botox) 주사 치료
.
(5) 파킨슨 증상 (Parkinsonism)
주요 처방: 레보도파(Levodopa / Carbidopa-Levodopa)가 가장 효과적이며 부작용이 적음
. 피해야 할 파킨슨 약물: 트라이헥시페니딜(Trihexyphenidyl), 아만타딘(Amantadine), 도파민 작용제(Ropinirole, Pramipexole 등)는 긍정적 효과보다 인지 저하 및 환각 부작용 위험이 큼
.
3. LBD 환자가 특히 주의해야 할 약물군 (항콜린성 약물 등)
항콜린성(Anticholinergic) 약물: 뇌 안의 아세틸콜린 작용을 방해하여 급성 심각한 혼란 및 인지장애를 유발함
. 감기약/수면제: 디펜히드라민(Diphenhydramine / Benadryl), 독실아민(Doxylamine / Unisom)
. 항우울제: 파록세틴(Paroxetine / Paxil)
. 마취/멀미약: 스코폴라민 패치(Scopolamine patch)
.
기타 주의 약물:
항생제: 시프로플록사신(Ciprofloxacin) 계열은 환각 및 혼란을 유발할 수 있으므로 대체 약물 사용 권장
. 진통제: 오피오이드계 진통제 및 가바펜틴(Gabapentin)은 과도한 진정 및 낙상 위험 증가
.
4. 수술 및 마취 시 가이드라인
불필요한 수술은 피하되, 필요한 경우 마취과 및 수술팀에 LBD 진단 사실을 사전에 알려야 함
. 스코폴라민 패치 사용을 금지해야 함
. 장시간 금식으로 인한 약물 투여 지연 및 섬망 발생을 줄이기 위해 가능하면 <오전 첫 수술>로 일정을 잡는 것이 유리함
.
5. 질의응답(Q&A) 핵심 정리
가바펜틴(Gabapentin) 투여: 통증이나 신경통 치료에 사용되나 저용량(예: 50mg~100mg)으로도 인지 혼란을 일으킬 수 있어 신중한 용량 조절이 필요함
. 약물 재시도 기준: 과거 부작용이 심했던 약물(예: 도네페질로 인한 구토)은 재투여하지 않으나, 용량 설정이나 투여 방식 문제였던 경우 저용량으로 재시도해 볼 수 있음
. 약물 처방의 우선순위 설정: 보호자와 환자가 가장 불편해하는 핵심 증상이 무엇인지 파악한 후, 그 증상을 타깃으로 약물 목록을 정리 및 단순화해야 함
.
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