Lewy Body Dementia Symptoms: Sleep Changes, Hallucinations, and Fluctuating Alertness

What happens when something has clearly changed, but forgetting isn’t the first thing a family notices?

With Lewy body dementia, someone may follow a conversation over breakfast and need much more help getting dressed a little later. Add disrupted sleep, changes in movement, or seeing things that aren’t there, and families can be left wondering what’s happening and how to respond.

In Episode 12 of Navigating Dementia, Carlyn Lenfestey explores Lewy body dementia through Know the Waters, the first step in The Signal Guide Navigation System™. We follow an imagined morning to understand how the diagnosis can affect everyday life, what support might help, and what to bring up with the healthcare team, even if you’re still seeking a diagnosis.

In this episode, we talk about:

• Why attention and alertness can change throughout the day.
• How Lewy body dementia can look different from Alzheimer’s disease.
• Sleep changes, including long stretches awake, daytime sleepiness, and acting out dreams.
• Why the care partner’s sleep needs to be part of the care conversation too.
• Responding when someone sees something you don’t see.
• How stiffness, slower movement, and dizziness can affect daily tasks.
• Why medication sensitivity matters and sudden changes need medical attention.
• Preparing for appointments when what happens at home doesn’t show up in the doctor’s office.

A question to carry into your week:

“What part of the day do we most need help with?”

Start with one example. Maybe getting dressed has become harder, sleep is interfering with meals, or you’re awake much of the night. Write down what’s happening and how it’s affecting both of you. You don’t need the right medical words to ask for help.

Free Doctor Visit Guide
Use this free guide to organize your observations and questions before the next appointment. You don’t need a diagnosis to use it.

Download the Doctor Visit Guide

Next week, we’ll explore frontotemporal dementia, or FTD, including why changes in behavior, judgment, personality, or language may appear before memory becomes the main concern.

Connect with Carlyn

FREE Weekly Newsletter, Finding Our Way In Dementia Care -> https://abetterwaydementiacaresolutions.com/page/weekly-sign-up-1?utm_source=podcast&utm_medium=shownotes&utm_campaign=ep12_shownotes
Website -> https://www.abetterwaydementiacaresolutions.com
Facebook -> https://www.facebook.com/profile.php?id=61562478140551
Instagram -> https://www.instagram.com/abetterwaydementiacaresolution/
LinkedIn -> https://www.linkedin.com/in/carlyn-lenfestey-abetterwaydementiacaresolutions
Pinterest -> https://www.pinterest.com/carlyn0832/
YouTube -> https://www.youtube.com/@NavigatingDementia

If this episode helped you understand a difficult moment, share it with someone who could use that same support.

DISCLAIMER

The information provided in this episode is for educational purposes only and should not be considered medical advice. Always consult with a doctor or a licensed physical therapist before starting any new exercise routine, using assistive devices, or following the recommendations mentioned. Every individual's needs are different, and professional guidance is essential to ensure safety and appropriateness of care.

What is Navigating Dementia?

Navigating Dementia is a weekly podcast for anyone caring for someone with dementia, family and professional caregivers alike. Host Carlyn Lenfestey, a physical therapist and dementia care specialist with 25 years of clinical experience, uses real stories and everyday moments to show that behavior is never the problem. It's always the signal. Each episode teaches one meaningful insight through her Wheel of Function Framework™, delivered like a conversation over coffee, not a lecture. There is always a better way.

early difficulties may be more
noticeable in attention, planning,

or understanding visual information.

Memory can be affected, but it
may not be the first thing that

brings families to the doctor.

And if anyone is mainly asking
about memory, some of what's

happening at home might get missed.

What if the hardest moments in dementia
are actually trying to tell you something?

Welcome to Navigating Dementia.

I'm Carly Lenfestey, a physical
therapist, dementia educator, and coach.

Each week, we'll share real stories
and practical strategies that help make

dementia a little more understandable
and caring a little less overwhelming.

Let's find our way together.

I wanna set up a story for you, okay?

Let's say that you have an appointment
this morning, and for once, breakfast

is actually going pretty well?

The person that you care for is talking.

You're having great conversation.

Uh, they may have an opinion about the
eggs you made, and maybe they're teasing

you because you burnt their toast.

But things are going okay.

And so you look at the clock, and
you're thinking, "Okay, we can do this.

We've got plenty of time."

And then you go to help them get dressed.

Let's say you hand them a shirt,
and they just stand there, and

they look at it, and they hold it.

So you start explaining what it is that
you want them to do, but they don't

seem to be following your lead at all.

And maybe their eyes keep closing, and
a little while ago, you were just having

a conversation, and now you're repeating
yourself, and, it's not helping them, and

so maybe you move a little bit closer,
and you say their name, and you try again.

And somewhere in there, you're
thinking, "What happened?

We were just talking a few minutes ago."

And if you've had a morning like
that with somebody who has Lewy body

dementia, you may know how quickly it
can leave you unsure of yourself, right?

Should I help more?

Should I wait?

Are they tired?

Is something wrong with them?

Last week we talked about Alzheimer's
disease, and today we're continuing

with Knowing the Waters, which is the
first part of the SIGNO Guide navigation

system with Lewy body dementia.

And I want to stay with this this
morning for a while because it gives

us a way to talk about what the
diagnosis can look like inside the home.

And you may be listening
without a diagnosis yet.

Maybe you've noticed changes.

Maybe you're still waiting for
that appointment with their doctor.

Maybe you have brought it up again
and again, and you've heard them

just say, "Well, it happens to
people as they get older sometimes."

But what you're seeing doesn't
feel right to you, right?

You know the person, and you know when
something is different, even if you

don't have the words to explain it yet.

So as you listen today, you might
recognize some of what we're talking

about, and that doesn't necessarily
mean that it's Lewy body dementia.

Different conditions can cause
similar changes And some of

those causes may be treatable.

But those observations are worth
bringing to a healthcare professional.

And I want you to try describing
what's changed from their usual self.

So something like they used to manage
getting dressed, and now they need

help, or something like They're
sleeping for long stretches during

the day, and that's very new for them.

Mention changes in their movement and
sleep and what they're seeing too, even

if nobody has asked about those things.

Those things are, are
actually really important.

I have a free doctor visit guide that
can help you get those observations

and questions together in one place.

You do not have to have
a diagnosis to use it.

Uh, so I'm gonna put that link
in the show notes for you.

And if you've already asked for
help and you're still concerned,

it's okay to go back and say, "You
know, this is continuing, and we

need to look into this further.

Something is not right."

Okay, so we go back to breakfast
and that change that you noticed

while helping them get dressed.

Now, with Lewy body dementia,
somebody's attention and

alertness can change quite a bit.

So they may follow a conversation at
breakfast and then struggle to stay

engaged later that same day, You'll
hear that called cognitive fluctuations.

Now, you can know those words and still
be totally caught off guard when it

happens, especially if you're trying
to get somewhere, like an appointment.

You remember what they could do
earlier, so naturally that's what

you're expecting now, and you might
keep explaining how to put on the shirt

because it doesn't make sense that
they suddenly need this much help when

before they could do it on their own.

So maybe you stop explaining for a
moment and you just sit next to them

and you see how awake they seem.

Just take notice, and you offer
a little bit of help with their

sleeve and see what happens.

Now, if there's time
to wait you might wait.

But if you've got to get to that
appointment, you may need to just do

more of the dressing than you expected
to actually be ready to get out the door.

And I wanna be careful here
because a new or a severe

change needs medical attention.

We can't assume that is a
fluctuation just because the person

has Lewy body dementia, okay?

Sudden confusion needs
prompt medical attention.

If they're suddenly difficult
to wake up, or they collapse, or

they have signs of a stroke, call
emergency services immediately.

Their care team can help you understand
what their usual fluctuations

look like and when to call.

Having those conversations ahead
of time may save you some of the

guessing on the mornings like this.

But let's say that the sleepiness is
something that you've been seeing as

becoming maybe a trend, and you've
already spoken with their doctor about it.

Um, and as you're sitting
there with the shirt, you start

thinking about last night.

You know, maybe they were awake for hours.

You were just drifting off when
you heard them moving, um, and

then you were also up again, right?

And by the time morning came,
neither of you had had much sleep.

Or maybe last night seemed fairly
settled, and they're still so sleepy

today that getting dressed is a
struggle, that doesn't make sense either.

Both are worth talking about.

You know, Lewy body dementia
can affect the brain systems

involved in sleep and wakefulness.

So people have trouble falling asleep or
staying asleep sometimes, and some are

very sleepy during the day, even when
they seem to sleep enough overnight.

You know, these problems can oftentimes
overlap, so that's not unusual.

Some families describe long stretches
when the person is awake, followed

by long stretches when they seem to
do very little other than just sleep.

It isn't a fixed cycle that
everybody follows, but when it

does happen in your home, it can
totally take over your entire day.

I don't have to tell you that.

You know, you're wondering when to offer
food and when to help them get washed

and whether, you know, to wake them
up for that medication that they take.

And then there's your own appointments
and the work that you have to get to

and things that still need to be done,
whether they're sleeping or awake.

And when someone says to you, "Just sleep
when they sleep," you're thinking, "Okay,

so when am I supposed to do everything
else that needs to get done," right?

They mean well, but
it's not helpful, right?

Maybe there's laundry piled up or you
haven't eaten anything besides the

toast that you grabbed this morning.

And even if you are given the opportunity
to lay down, you're really not resting

because you've got one ear open and
thinking, you know, "Was that the bed?

Are they getting up?

Do they need me?"

That's not restful.

That's exhausting.

And it's easy for an appointment
to become entirely about how the

person with dementia is doing, right?

But if you're the one that's helping
them through the night, their

doctor needs to understand what
those nights are like for you, too.

You can say, you know, "They're awake
for much of the night, and so I'm awake

with them, and when they're sleeping
during the day, I'm still trying to

get everything done, you know, a-
and I'm not getting enough rest."

Be honest with them.

You know, you don't need to make
it sound more clinical than that.

Just be very upfront with how
you're feeling and the actual

situation that you're dealing with.

And when you describe the
person's sleep, it helps to say

what you're actually seeing.

Okay?

You know, are their eyes closed?

, And do they wake and
respond as they usually do?

Are they, you know, sitting there
with their eyes open, but they're

barely engaging, or are they
much harder to wake than usual?

Sleep and changes in alertness can be a
difficult thing to tell apart sometimes.

So when they are suddenly unable
to be woken up, someone normally

needs emergency help at that point.

Um, it shouldn't be
treated as an ordinary nap.

Okay?

But for an ongoing problem,
give the team a few examples.

Say something like, you know, "They're
awake for most of the night, and this

has happened several times this week."

And ask the care team, you know,
what am I supposed to do about meals

and fluids and their medications
if sleep is getting in the way?

You know, the answer about waking
someone for medication really

does depend on the person and the
prescriptions that they're taking.

Some of them are more
important than others.

Um, and it helps to have that
worked out before you're standing

there wondering whether or not you
should wake them in the middle of

the night or the middle of the day

There may also be something else adding
to the problem, and this could be pain

or sleep apnea or, you know, medication
that might be making them drowsy.

A sleep specialist and a medication review
may be really helpful in this situation.

The diagnosis can explain some
of those sleep changes, but there

may be something treatable that
would give both of you some rest.

So it's worth looking into.

And sometimes the night is difficult
for very different reasons.

You know, you may hear your person
calling out or yelling, or you may wake

up because they're kicking or swinging an
arm while they're asleep, and that can be

incredibly frightening, especially if it's
the first time that you're witnessing it.

With a condition called REM sleep
behavior disorder, someone can

physically act out their dreams,
usually our muscles are mostly kept

from doing that during REM sleep.

But with Lewy body dementia, that doesn't
happen as it should, and it can occur

years before other Lewy body symptoms
happen, although acting out dreams

doesn't establish the diagnosis by itself.

If this is happening, you need to
tell the doctor and ask about an

assessment in making the bedroom safer.

So things like moving sharp or
breakable objects away from the bed.

Uh, if either of you could get
hurt by sharing a bed discuss

a safer sleeping arrangement.

You both need to be able to sleep safely.

Always check with a doctor before trying
a sleep aid, and this includes something

from the drugstore or a supplement.

Uh, some of these products
can make confusion and

daytime sleepiness far worse.

Their clinician or pharmacist can
review what you're considering, and

give you some counsel about that.

So don't change prescribed
medications on your own.

Make sure you're having
those conversations with

your doctor and pharmacist.

And if someone offers to help, this may
be time to say, "Could you stay for a

few hours so I can just get a nap in?"

And if there's nobody that you can
ask, then tell the care team that too.

You know, tell them, "I'm the
only person here overnight, and

paid care is not an option for us.

We just can't afford it."

They may be able to hook you up
with a social worker who could

help you look into other options.

Now, I know that asking doesn't
guarantee that help will be available,

but they do need to know what you're
actually managing and see what

resources might be available to you.

Now back to our morning.

You've helped with the shirt.

You're gathering what you need to for
the appointment, and the person says,

"Well, what about that little boy?

Is he gonna come with us?"

And you look toward the
hallway, but obviously there

isn't a child there, right?

And you may have no idea what to
say because part of you wants to

explain that nobody's there, and
you might even start to say it.

That's understandable.

When someone tells us something
that doesn't match what we see,

correcting is often our first response.

That's human nature.

Visual hallucinations can happen in Lewy
body dementia, sometimes very early on.

A person may see things like people
or animals that aren't present, and

what they see can be quite detailed.

So before you say much, just notice
how they seem to feel about it, right?

Like, are they comfortable?

Do they seem worried?

Um, are they trying to get
away because they're scared?

You know, that helps you decide
your next course of action.

So if they're calmly asking about a child,
you might say, "Eh, come sit with me

for a while while we get ready to go."

You know, you don't have to convince
them that there's nobody in the

hallway before you can sit together.

And if they're scared, you could say
something like, " I don't see anyone

there, but I can see that you're
worried, and I'm here with you."

You don't have to say that
you see the child there too.

You can be honest about what you
see and still take their fear very

seriously and make them feel heard.

And if the first thing you say doesn't
help, just take a breath and try again.

Most of us haven't had someone
teach us how to respond to a

conversation like that, right?

You know, let their clinician know
about those hallucinations, particularly

when they're new or changing, right?

If they're frightening or creating a
risk of harm, ask for help with a plan.

You know, some hallucinations
don't trouble the person, and

they may not need medication.

But other times there really is something
in the hallway, but they're seeing it

very differently than we do, right?

So again, an example might be
a coat hanging by the door that

looks like a person to them.

You know, that's a misperception.

So moving that coat or changing the
lighting may help in that situation.

It won't explain or fix
every hallucination, but it's

something that you can check on.

Now you're ready to leave, and getting
up from the chair is taking longer

than you expected it to for them.

You're holding their bag,
looking at the clock and saying,

"Okay, we need to stand up."

And maybe you've said it a few
times already, but their body is

just slow to kinda start moving.

Lewy body dementia can cause
Parkinson-like movement changes,

like stiffness or slower movements,
shuffling steps, difficulty

with balance, things like that.

A tremor may happen, but
not everybody has one.

And as a physical therapist, I pay
attention to the effort involved in

someone's getting out of a chair.

You know, from the outside, it can look
as though the person just needs to start.

But if the body is stiff and
moving is difficult, then they

may need some time and a different
kind of help to be successful.

You know, you may feel yourself wanting
to just pull them up, especially

when you're running late, right?

But pulling on their arm or
rushing them before they're ready

can make it less safe for them.

A physical or occupational therapist
can show you how to help with their

particular movement difficulties and
whether equipment might be useful.

You know, you deserve to feel
comfortable helping them too.

So those are great
resources to reach out for.

And if they stand and they seem dizzy,
that's something to tell the doctor.

Lewy body dementia can affect
automatic body functions, including

blood pressure regulation.

So blood pressure can drop
when somebody stands, causing

dizziness or sometimes fainting.

So when you think back over
the morning, you may be looking

at several things all at once.

Poor sleep, changing alertness,
difficulty making sense of what they

see, stiffness, maybe some dizziness.

All of those things can affect
whether someone can get dressed

and out the door, and each may
call for a different kind of help.

The name Lewy body dementia comes
from deposits of protein called

alpha-synuclein in the brain.

You may also hear two related
diagnoses, dementia with Lewy bodies

and Parkinson's disease dementia.

One distinction doctors use is
when the thinking changes began

compared with the movement symptoms.

So with dementia with Lewy bodies,
thinking changes happen before or around

the same time as movement changes.

But Parkinson's disease dementia
develops after Parkinson's disease

has already been established.

Both are forms of Lewy body dementia.

When we think about dementia, we
usually think about forgetting.

So what happens when forgetting isn't
the first thing that family notices?

when something has clearly changed, but
it doesn't look like the Alzheimer's

disease that we've heard about.

With Lewy body dementia, early
difficulties may be more noticeable

in attention, planning, or
understanding visual information.

Memory can be affected, but it
may not be the first thing that

brings families to the doctor.

And if anyone is mainly asking
about memory, some of what's

happening at home might get missed
And now you're at the appointment.

If it's one of those times when a person
is awake and talking easily, you might

wonder how to explain the rest of the
morning without sounding as though you're

exaggerating or making the whole thing up.

Tell them about the shirt.

Tell them about the night before.

Those little details help explain what
daily life has been like, and a good

doctor should understand that what
they are seeing is just one snapshot of

the day that you experience with them.

A few notes can make that easier
too, especially if you haven't slept.

So, you know, nothing elaborate, just what
happened, roughly when, and whether it

was different from what you usually see.

And then the doctor can help
kinda look at those patterns.

And this is where that doctor visit
guide I mentioned earlier may help.

You can use it to prepare your
questions and keep track of what

you're wanting to bring up so
that you aren't trying to remember

everything once you're in the office.

There's one thing I want you to
mention whenever you're seeing a new

healthcare professional, and that's
the Lewy Body diagnosis itself, along

with any previous medication reactions.

People with Lewy Body dementia
can be particularly sensitive to

some medications, um, especially
antipsychotic medications that

are sometimes prescribed for those
hallucinations or severe agitation.

They can cause severe reactions.

Um, haloperidol, which is called Haldol,
can be particularly dangerous and is

generally avoided in this condition.

Reactions can include much more
sleepiness, worsening confusion,

and worse movement patterns.

Fever with severe muscle
stiffness after an antipsychotic,

can signal a life-threatening
reaction and needs emergency care.

There are treatments that may help,
but the provider needs to understand

Lewy Body dementia and watch carefully
for the side effects, so don't stop

or change medications on your own.

Keep the diagnosis and any previous
reactions with the medication

list, including over-the-counter
products and supplements.

If Lewy body dementia is suspected but
hasn't been confirmed, say that clearly.

You can ask, "Before we start this
medication, can you just double-check

whether it's appropriate for
someone with Lewy body dementia?"

You don't have to know
every drug name to ask.

You're not expected to
catch every medication risk.

The healthcare team is
responsible for that.

But having that information ready
can help, especially if you're

in an unfamiliar place or seeing
somebody new for the first time.

When you get home after a morning like the
one we've just imagined, you may be tired

before the afternoon has even started.

Maybe the appointment went well.

Maybe you remembered most of your
questions, and now you're wondering

what to make for lunch and hoping that
you can both rest for a little while.

Think about how many times
you adjusted that morning.

You helped Morg with the shirt.

You listened when they
told you about the child.

You slowed down when getting out of
the chair was hard for them, and at

the appointment, you tried to explain
what had been happening at home.

You may not have felt especially
patient or sure of yourself through

all of that, but you were paying
attention and trying to help.

Understanding the diagnosis can give you
a little more to work with the next time

you're wondering what's happening here.

That's why we're spending
this time on Know the Waters.

With Lewy body dementia, the
person may need different amounts

of help throughout the day.

Sleep can affect the whole household,
and some changes need a call to

the medical team, even when you've
seen this fluctuation before.

And if there's one thing from today
that sounds familiar, start there.

Maybe you want to ask about
the long stretches of sleep.

Maybe you need help with getting them
up safely, or maybe you need to tell the

doctor, "I'm not sleeping and I can't
keep managing the nights this way."

You don't have to wait until you
can explain every single part of it.

Tell them what's been hardest and ask
them to help you work out what to do next.

And I hope for you that there are
breakfasts with more conversation

and a little teasing about the toast.

And when those moments come, enjoy them.

If the afternoon is harder, it
doesn't take away from the morning

that you just shared, right?

Next episode, we're gonna talk about
frontotemporal dementia or FTD.

With this diagnosis, families may
notice changes in behavior, judgment,

personality, or language before
memory becomes the main concern.

We'll talk about why someone may
say or do things that feel so

unlike them, and how understanding
those changes can help you respond.

Until then, if you've been trying
to make sense of days like the one

we just talked through today, I hope
this gave you a few answers and a

place to start with your questions.

I'll see you next time

If today's episode was helpful, I'd
love for you to share it with someone

else who might need to hear it.

And if you haven't already, I'd
love to stay connected with you.

Every week, I send a free newsletter
filled with practical tips, real

stories, and encouragement for
care partners and professionals.

It's one more way that I can walk
alongside you between episodes.

You can sign up using the
link in the show notes.

Until next time, remember,
there's always a better way