Mixed Dementia: What It Means and What Caregivers Should Know

Someone with Alzheimer’s has a stroke. You were already figuring out life with dementia, and now there are new difficulties, new instructions, and questions about what comes next. You want them home. But you’re also wondering, “Can I actually manage this?”

In this episode of Navigating Dementia, Carlyn explores mixed dementia, when brain changes associated with more than one cause of dementia occur together. Alzheimer’s disease and vascular changes are a common combination, but mixed dementia can also involve other conditions, including Lewy body disease.

Drawing on her work as a physical therapist in a rehab center, Carlyn explains why understanding someone’s baseline before a stroke is so important. What could they do while already living with dementia? What reminders, familiar cues, or help did they need? Knowing those details helps the healthcare team recognize new difficulties and plan support that fits.

Using the Wheel of Function Framework™, she also explores why everyday tasks may become harder when several difficulties overlap, how rehabilitation may help, and why a care plan needs to account for the support a family actually has.

And throughout the conversation, there’s room for the overwhelm and frustration. You can understand that someone is having difficulty and still feel worn down by how much help the day requires.

In this episode, you’ll learn:

• What mixed dementia means and why it isn’t always Alzheimer’s and vascular dementia
• Why overlapping symptoms can make changes difficult to understand
• What “baseline” means and why abilities before a stroke matter
• How family observations help the rehabilitation team understand what has changed
• Why a dementia diagnosis alone doesn’t tell us everything about someone’s potential for recovery
• How to ask for instructions and support that work at home
• Why sudden changes should never automatically be attributed to dementia

One Thing to Try This Week

Think about what an ordinary day looked like before the stroke or recent change. Write down what the person could do and what help you were already providing.

Instead of “They needed supervision,” try something more specific:

“He could get out of his chair and walk to the kitchen, but I stayed nearby and reminded him where we were going.”

Include the reminders, preparation, and familiar routines that helped. Those details can be easy to overlook when they’ve become part of your day.

And include what has changed for you. If you’re now providing physical help, losing sleep, or struggling to manage the care plan, the healthcare team needs to hear that too.

Coming Next Week

Next week, we’re exploring another part of Know the Waters: knowing the person behind the diagnosis.

We’ll talk about the precious cargo they bring with them, including the routines, relationships, interests, and experiences that help us understand who they are and what matters to them.

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

Connect with Carlyn

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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.

if you're the family member who keeps
saying, "But this is different,"

it can be incredibly frustrating
to feel like everything is getting

put under the dementia diagnosis.

We as professionals
need to listen to that.

Knowing the baseline helps us
understand the changes and then

plan the support that's needed.

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

Welcome to Navigating Dementia.

I'm Carlyn 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.

Someone with Alzheimer's has a stroke.

Now what?

I work with people after strokes all the
time in my work as a physical therapist

in a rehab center, and often those
people are also living with some form

of dementia, frequently Alzheimer's.

And one of the most important things that
I need to understand as the PT is how

they were managing before the stroke.

Because they have dementia doesn't
tell me whether they were walking

around the house on their own.

You know, could they find the bathroom,
or do they need somebody beside them

through every single part of their day?

And those details really do matter.

Maybe that's a question that
your family's had to ask.

You're already figuring out
life with Alzheimer's, and you

found a few things that helped.

But You had a routine, even if some days
that routine barely held together for you.

And then there's a stroke, you
know, a hospitalization happens.

There are new people explaining
new changes, And somewhere in

all of that, someone now starts
talking about coming home.

And of course, you want them to come
home, but you're also wondering, "Wait

a minute, can I actually manage this?"

Before you were helping with
medications and answering the same

questions over and over again.

And now you might also be having to
help them get out of a chair and maybe

watch them eat or try to remember what
the therapist said to do with this

new walker that they now have to use.

And you're tired, and you probably have
barely slept since the hospital called.

So when someone says, "Any questions?"

Where do you even start?

You know, you don't, you don't
know where to begin, right?

So today we're gonna talk about
mixed dementia, and I wanna talk

about what that means for the person
living with it, but also for you,

trying to understand what's changed
and what you're supposed to do next.

Last week we talked
about vascular dementia.

Alzheimer's and vascular changes are a
common combination in mixed dementia, so

we're going to use that example today.

But other combinations certainly can
happen, too, including Alzheimer's

changes along Lewy body disease
or Parkinson's with vascular

dementia or a myriad of other kinds

And mixed dementia doesn't always begin
with an obvious event like a stroke.

Sometimes the changes build
much more quietly over time

If someone has used the words mixed
dementia with you, you may have thought,

"Okay, but what does that actually mean?"

Well, what it means is that the
brain changes associated with more

than one cause of dementia are
present together at the same time.

So someone may have the changes
associated with Alzheimer's disease,

for example, as well as damage related
to blood vessel disease or Alzheimer's

changes with Lewy body dementia.

Sometimes more than two kinds of
changes are involved simultaneously,

and what gets really confusing is
that these don't show up as nearly…

And what gets really confusing
is that these don't usually show

up as neatly separated problems.

You don't get a little note that says,
"This difficulty is from Alzheimer's, and

this one is from vascular changes," right?

And so on.

You are seeing the entire person, the
whole person trying to get through lunch

or, you know, getting to the bathroom or
just getting settled in for the night.

And maybe you're thinking, "Well,
I've read about Alzheimer's.

We've heard about it through the podcast.

I thought I understood what to
expect , but this doesn't look

anything about what I read.

But this doesn't look anything like what
I've read or watched or listened to."

And that can be really frustrating.

You know, you're making an
effort to understand, and the

explanation still doesn't seem
to fit your day and your person.

And sometimes more than one
condition is part of the reason.

Sometimes there are other contributors
that need to be checked out as well, and

sometimes the healthcare team is still
working on figuring out the picture.

You're allowed to ask them to
explain what they know and also

what they're unsure about still.

You shouldn't have to guess what a
diagnosis means for your family Let's

imagine for, let's imagine for a moment
that the person with Alzheimer's is

coming home after a stroke, and you've
made lunch, you put the plate down, you

sit down for a minute yourself, and you
realize they haven't touched it yet.

And so you say, "Hey,
your lunch is ready."

And still nothing.

And so maybe you move a little closer,
maybe you say it a little louder, you

know, "Go ahead, it's getting cold."

And still nothing happens.

They just kinda just sit
there looking at the plate.

And maybe you hear yourself getting a
little sharper, maybe a little shrill,

and you've already been up and down
six times, your own lunch is sitting

somewhere, and you need to make a
phone call before the office closes,

and you just wanna get them to eat.

And then you feel guilty about
being irritated with them.

That's a really hard place to be.

Y- you know, you're worried about
them, you're trying to help,

and you're frustrated, and those
feelings can all be there together,

so don't beat yourself up, okay?

We can understand that someone is
having difficulty and still feel

incredibly worn down and frustrated by
just How much help the day requires.

Now, once you have a moment to look
more closely, there may be some things

that are useful to notice for you.

So before the stroke, maybe a
reminder was enough for them.

But today, maybe holding
the fork is harder.

Maybe they're having trouble
noticing part of their plate.

Maybe getting started is the
difficult thing for them to

do, or maybe they're exhausted
before the meal has even started.

The result looks the same from your side
of the table, you know, they're, they're

not eating, so that's the problem.

But the help that they need
may have changed for them.

And this is where I come back
to the Way of Function framework

that we've been working through.

I'm looking at not just physical
ability, but their ability to think

and process sensory information
and their emotional, uh, state and

the environment that they're in.

You know, could more than one of
those things be making lunch harder?

Probably, yes.

And that doesn't mean that you need
to run through a whole assessment

while your food is getting cold.

But just start with one thing that
you can see and bring new difficulties

that you're finding to the team.

If swallowing seems to have, changed for
them, oftentimes it does after a stroke,

or they're coughing with meals, ask
for an assessment and get a clear plan.

And if you try the suggestions and
the meal is still really difficult,

you need to tell them that, too.

Say, you know, "We tried it this way.

Here's what happened."

A strategy that doesn't help
gives the team more information.

It's not a reason to automatically
assume that you did something wrong

Let me bring this back to rehab for a
minute because this is where knowing

the person's baseline matters so much.

So baseline is a word that
we use a lot in healthcare.

And when I say baseline, what I
mean is what was a usual day like

before the stroke in this example?

And I mean before this stroke while
they were already living with dementia.

How are they getting around?

How much help did they need?

What were they able to do if someone
gave them just a little bit more

time or maybe a familiar cue?

Say I'm working with someone who doesn't
remember what we practiced yesterday.

I need to know whether remembering
new information was already difficult

for that person before the stroke.

And if it was, expecting them to remember
a whole new set of instructions on their

own may be asking something of them
that they couldn't manage even before

this happened, and that's unrealistic.

At the same time, maybe they needed
those reminders, but they could get

out of their chair and they could
walk to the kitchen or to the bathroom

without anyone helping them, okay?

But maybe now they need physical
help to stand, and that's a very

important and significant change.

They have dementia
doesn't explain that away.

Both parts belong in the picture,
you know, the help that they already

needed and what's different now, and
that is why the people who know them

are so important to that conversation

You might tell me, well, at home,
I'd say, "Let's go get some coffee,"

and he would get up and follow me.

But if I gave him three directions
at once, he'd get confused.

You know, that tells me much
more than he needed supervision.

It gives me a clearer idea of what
participation actually looked like for

him and what kind of support helped him.

And if you're a professional listening
right now, ask those details.

Independent can hide a lot of
help that a family was quietly…

Independent can hide a lot of help that
a family has quietly built into the day.

So, you know, someone may have been
walking without hands-on help, but

their partner set everything up for
them, stayed nearby, and reminded

them of where they were going.

So that's not really independent.

And if you're the family member who
keeps saying, "But this is different,"

it can be incredibly frustrating
to feel like everything is getting

put under the dementia diagnosis.

You knew there were difficulties
before, and you're trying to

explain that there are new ones now.

And keep doing that.

Be persistent because it matters.

We need to listen to that.

We as professionals
need to listen to that.

Knowing the baseline helps us
understand the changes and then

plan the support that's needed.

It doesn't tell us exactly how much
recovery someone is gonna have.

We don't have a crystal ball for
that, but it certainly does give us

a much more useful place to start.

It also matters when we
talk about going home.

If they already needed reminders and
someone nearby, that support still

needs to be accounted for alongside
whatever help they need after the stroke.

Because a plan can sound reasonable in
a therapy room or a team conference,

but it may be very difficult to carry
out in your kitchen, in your home.

You, you can sit through the
explanation and nod along and still

get home and think, "I have no idea
how I'm supposed to do all of this."

Especially when the person that you care
about can't remember the instructions

themselves, and so you're the one having
to try to remember for the both of you.

You know, if someone needed reminders
before the stroke, handing them exercises

with several steps may not give them
what they need to practice at home.

And so we have to talk about who is gonna
give the help, what directions the person

can follow and how that practice fits into
everyday life when the person goes home.

And you can absolutely ask the
professional that's working with

you, "Can you show me that again?

And then can you just watch me
try it so I know what I'm doing?"

Or, you know, "He won't
remember this on his own.

What are we gonna do about that?"

Or simply, "I'm overwhelmed.

I need us to slow down.

I'm really having a hard time here."

You know, you don't have to sound
calm, and you don't have to know the

right medical words to ask for that.

You just need to say,
"I need some help here."

And if helping them stand
puts your own safety at risk,

the team needs to know that.

If you work during the day,
they need to know that.

If there's nobody else coming
to help you and you are the solo

person who will be providing care,
that needs to be part of the plan.

And sometimes families are given advice
that quietly assumes that there's another

person available, or that there's this
extra money for help, or, you know,

their house is set up perfectly for
safety and for the person's recovery.

But those things can't just
be assumed by the care team.

We need to, as professionals, be
asking those questions, asking better

questions, and being more curious.

And the plan has to make sense in
the home that you have, with the

support that you actually have.

And then there's the question that
can be really difficult for anyone

to answer, and that's, you know,
how much better are they gonna get?

And I wish there were a simple
answer for that, but we just…

oftentimes we don't know.

Because after a stroke, some
abilities may improve with recovery

and with rehabilitation, but some
difficulties may remain, and we can't

predict what those things will be.

Certainly having dementia can
affect how somebody learns and

how they follow directions, how
they participate in their rehab.

So the approach may need to change
depending on all of those things.

The diagnosis alone doesn't tell
us everything that's possible.

So knowing what they could do before
the stroke helps us to discuss

realistic goals that fit the person.

Um, we also need to reassess
as recovery is unfolding.

You know, maybe that means,
walking to the bathroom with help.

Maybe it means participating
in part of a meal.

Maybe it means finding a safer
way for you to help them move.

But all those things need to be
discussed with the rehabilitation team.

And I know that even when there's
progress, you may still be

thinking about what they could do
before, and that is being human.

You can do two things at the same time.

You can really appreciate the
improvement that they're making,

but you can also wish that things
were easier than they are right now.

And you don't have to turn every
small gain into a reason that you

shouldn't feel tired or disappointed.

Again You are human, and that's
a very natural human response.

Mixed dementia also doesn't
give us one timeline to follow.

There may be gradual changes, a
sudden change after a stroke, and

some improvement during recovery.

And the combination of conditions
and the areas of the brain affected

help shape what happens next.

And that uncertainty can be exhausting
and frightening, and it's hard to

plan when you don't know how much help
someone will need next week or next

month, or whether today's difficult
moment will possibly be easier tomorrow.

One thing that we do need to
be clear about is that a sudden

change shouldn't be brushed aside
because someone has dementia.

I've mentioned this in previous
episodes, but it's worth saying again.

Sudden confusion needs
immediate medical attention.

So if you notice a sudden facial
drooping or weakness, or they're having

difficulty speaking, or there's a
sudden change in their balance or their

vision, call nine one one immediately.

Even if it improves or it seems
to go away, it's an emergency.

There might also be delirium or a
medication effect or another medical

problem that's contributing to the
change, and we need the healthcare team

to evaluate it rather than assuming
that it's all the dementia progression.

So what does treatment look like when
more than one condition is involved?

Well, it depends on the condition and
the person's overall health, number one.

There may be medication considered
for Alzheimer's symptoms, um, care for

blood pressure or diabetes, therapy,
or maybe help with them getting

better sleep or with their mood.

And you can hear all of that
and think, well, that sounds

like even more appointments and
more things for you to manage.

And that's a fair concern
to bring up to the team.

So when you're with them, ask, you know,
what are we trying to help with first?

How can we prioritize things?

Or, how will we know whether
this is even helping?

And if the instructions seem to conflict
or the schedule feels like it's completely

impossible for you to do, then you need
to ask the team to help you sort that out.

You need to understand what the
priorities are, including what to do

when everything can't happen exactly
as planned because you know as a

care partner, things usually don't.

And if you're still waiting for a clear
diagnosis, you can ask, could this be

more than one condition contributing?

Would knowing that even change what we do?

It's worth asking.

Bring a couple examples from home.

You know, what could the person do before?

What happens now?

Um, and when did you start to
notice some of the differences?

Even just taking a few notes and putting
them on your phone are enough to begin.

Um, and I'm gonna include my free
doctor visit prep guide in the show

notes if having a place to gather
those questions would help you out.

We've spent these past few episodes on
the diagnosis part of Know the Waters

and the Signal Guide navigation system.

And I hope that understanding these
different conditions gives you a little

bit more to work with when you're
wondering what is happening here.

But understanding more doesn't
suddenly make the work easy.

You know, you still have to m-make
meals, and there are appointments to

manage, and then of course, there's your
own life that's asking things of you.

So if you've been getting frustrated,
I hope that you can bring that into

the conversation about care too.

You know, you can say, "By the end of
the day, I have nothing left," or, "We

need more help than we have right now."

You know, you deserve to be taken
seriously when you say that.

Next time, we're gonna spend some time
with another part of Know the Waters.

And that's knowing the person and the
precious cargo that they bring with

them, the routines, relationships,
interests, and their experiences that

help us to understand who they are.

For now, maybe there's one question
from today that you want to bring to

the team, or maybe you need to tell
them that the current plan is asking

more than what you can safely give.

That's something that they need to hear.

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