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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.
when we talk about vascular dementia,
we're talking about the effect of
vascular damage on everyday abilities,
and what that looks like depends
partly on where the damage happens.
And that helps us explain why two
people with the same diagnosis may
need very different kinds of support.
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.
Can I tell you a story?
This one is about my grandmother.
Over the course of a few years, she had
several hospitalizations for chest pains,
minor heart attacks, and multi-multiple
events that we knew as mini strokes.
And after each event, she never quite
returned to where she'd been before.
She was more forgetful, her face showed
less emotion, she became more unsteady
on her feet, and those changes kept
adding up, and we lost her slowly.
And that's how those years felt to me.
She was still my grandmother, and
we were still a family finding ways
to be together, but we were also
watching things change and trying
to understand what was happening and
adjusting as she needed more help.
My grandmother never received
a formal dementia diagnosis.
Uh, none of my grandparents did.
But after twenty-five years as a physical
therapist, including fifteen years
specializing in dementia care, I look
back with a different understanding.
I suspect vascular changes
contributed to what we were seeing.
I can't go back and tell you exactly
what was happening in her brain or
whether more than one condition was
involved, but I remember the pattern.
Something would happen medically,
and she would get through it, and
afterward, things were different.
And maybe you recognize that too.
Or maybe there hasn't been a
hospitalization or one obvious
event that you can think of.
You just know that everyday life
has become harder, and you're
still trying to understand why.
Today we're talking
about vascular dementia.
I wanna connect the medical explanation
with what families actually notice
at home because that's where so
many of the questions come up.
When you hear vascular,
think blood vessels.
Our brains depend on blood flow to
bring them oxygen and nutrients, and
disease or injury affecting those blood
vessels can damage the brain and change
how someone thinks and functions.
A stroke can certainly be part
of that picture, so can disease
affecting the smaller blood
vessels deep within the brain.
High blood pressure and diabetes
can contribute to vascular damage.
Narrowing of the arteries supplying
the brain can also affect blood flow.
Having those conditions doesn't
automatically mean that someone will
develop dementia, but they are relevant
parts to the medical history So when
we talk about vascular dementia,
we're talking about the effect of
vascular damage on everyday abilities.
And what that looks like depends
partly on where the damage happens.
And that helps us explain why two
people with the same diagnosis may
need very different kinds of support.
One of the classic patterns that we
talk about with vascular dementia
is a stepwise change, especially
when there are repeated strokes.
So someone is managing at their usual
level, what we call their baseline,
and then there's an event, and their
abilities change quite suddenly.
And over the following weeks or months,
they may regain some ground, but they
may not get all the way back to where
they were before the event happened.
Things settle for a while, and the family
starts to adjust, and then another event
happens, and there's another change.
And that's what I remember
with my grandmother.
They get through the
hospitalization, and you're relieved.
And of course you are, But then when
you get them back home, you realize
getting through it didn't mean that
everything went back to how it was before.
They need more help now.
And just as you're figuring out what
that looks like, something else changes.
You may still be expecting them to do
something that they managed before the
hospitalization, and then you realize that
that task has become difficult, and they
can't do it safely without help anymore.
And there's a lot of adjusting
inside of that experience.
And you're figuring out what they
need now while remembering what
they could do before, and sometimes
you're doing that without anyone
having explained what to expect.
And that stepwise pattern
deserves attention.
But vascular dementia
doesn't always follow it.
Small vessel disease can cause changes
that build more gradually without one
obvious event that a family can point to.
So a family may describe a
series of noticeable drops.
Another may describe a
quieter change over time.
Both histories are worth
bringing to the healthcare team.
Something else that can be
confusing is that memory may not
be the biggest change at first.
With vascular cognitive changes,
a person may have more difficulty
paying attention or organizing a
task, maybe solving a problem or even
starting a task in the first place.
Thinking can become slower too.
Memory can be affected, but
it may be less prominent early
on than families would expect.
You know, think about getting
ready for an appointment.
You say, "We need to leave soon.
Get dressed, brush your teeth,
grab your shoes," all of the
things, and they say, "Okay."
So you go finish getting ready, and then
you come back, and they haven't even
started, and you're watching the clock,
and you're thinking, "Oh, God, like,
we, we were just talking about this.
You said you understood."
But understanding the words and
carrying out the whole task ask
different things of the brain.
They have to hold on to what you
said, decide where to begin, and
then move themselves through the
series of steps, and somewhere in
there, they may have needed help.
You could bring the shirt over
and say, "Here's your shirt.
Let's get this on," and
then give them time.
Maybe that gets things moving.
Maybe they need another cue.
You know, you're finding out what kind
of support helps them to participate,
and I know that that sounds easier
when we're talking about it here
than when you're running late and
trying to find your own shoes,
Understanding what might be happening
doesn't give you endless patience, right?
But it can help you pause before
deciding that they're ignoring you
or just trying to be difficult.
This is why memory alone can be
a misleading measuring stick.
Someone may know exactly who you
are and may remember a family
story and talk comfortably with a
visitor, and then they may need help
getting dressed or preparing lunch.
You might even hear, "They
seemed fine when I was there."
Conversation on the couch asks
different things of the brain than
managing medications, cooking a
meal, or organizing the morning.
What you're seeing at home
matters, even when it doesn't show
up during someone else's visit.
If you've ever struggled to explain
that difference, you could say they
can still enjoy a conversation, but
they're needing more help carrying out
everyday tasks, and that gives people
a clearer picture than arguing about
whether someone seems forgetful or not.
With my grandmother, I also remember how
much less expression we saw in her face.
Clinically, we might
call that a flat affect.
But when it's your grandmother,
you're noticing that the reactions
you knew so well have changed.
You know, you expect a smile or a
certain look, maybe a grin, and the
response is smaller than it used
to be, and that can really hurt.
Some people with vascular changes
experience apathy, meaning
less interest or initiative.
Depression can also occur as well.
Changes in walking and balance
may also be part of the picture.
But a quieter face doesn't tell us
everything about what someone is feeling.
We can't assume that the visit
meant nothing because they didn't
respond the way we had hoped.
You can still sit beside them, you
know, offer familiar music, bring
them into a conversation without
requiring them to keep it going.
And then notice what happens.
You know, do they turn towards you?
Do they seem more comfortable?
Is there a small response that
you might miss if you were
waiting for something bigger?
Those moments can help
you find ways to connect.
And changes in expression,
interest, or mood are also worth
discussing with the healthcare team.
When I look at my grandmother's
experience through the Wheel of
Function framework, I see changes
across several parts of the wheel:
cognition, emotion, physical function.
And in everyday life, those
things are happening together.
Someone may have trouble following
the steps of getting dressed and
also feel unsteady when they stand.
If we keep giving instructions from
across the room, we may be asking more
than what they can manage in the moment.
Could they sit in a sturdy chair?
Could we bring the clothes within reach?
Could we offer one step and then
wait before adding the next?
And what's happening around them?
Is the TV on?
Are several people talking at once?
Are we rushing them?
You don't have to turn the
morning into a big assessment.
Just choose one moment that has become
more difficult and get curious about it.
Make an adjustment.
See whether it helps.
That's how the wheel can
support you in real life.
There's another piece here, especially
when someone has experienced a
noticeable decline, and we need to
find out what they can do now while
still leaving room for recovery.
And that may mean asking about
physical therapy, occupational
therapy, or speech language services,
depending on what has changed.
A new need for help doesn't mean
that we should stop offering
opportunities to participate.
It means that we need to
change how we support them.
Maybe they can no longer
manage the whole meal, but they
can help prepare part of it.
You know, maybe dressing works better
with the clothes set out and somebody
just nearby to offer some cues.
We're trying to understand both what's
difficult and what remains possible.
If you don't have a clear
diagnosis, you can still bring
these concerns to an appointment.
You don't have to decide yourself
that it's vascular dementia.
You can say, "Since the hospitalization,
she's needed help with things that
she used to manage on her own,"
or, "He remembers what we're doing,
but he seems to be unsure of how to
get started," or, "Her walking and
her thinking have both changed."
Write down what the person
could do before, what has
changed, and when you notice it.
Include whether there was a sudden
event or whether it developed over time.
Those examples can help the
healthcare team understand
what daily life looks like.
They also need to evaluate other
possible causes or contributors.
A change after a hospitalization
isn't automatically permanent
dementia progression.
I'll put my free doctor visit
preparation resource in the show notes.
It can help you gather your observations
and questions before you're sitting in an
appointment trying to remember everything.
Medical care also includes addressing
the vascular conditions that may
contribute to further injury.
The treating clinician may be working
with someone to manage blood pressure,
diabetes, cholesterol, or certain heart
rhythm problems, and the plan needs to fit
that person's health and circumstances.
And please tell the team if the plan is
difficult for you to carry out at home.
If medications are confusing or
appointments are hard to manage or you
need help understanding the instructions,
that belongs in the conversation.
This also isn't an invitation
to look back and blame yourself.
Knowing that something is a risk
factor doesn't mean a family could have
controlled everything that happened.
Use that information to ask
what may help going forward.
One thing I want to be very clear
about, recognizing a stepwise
pattern does not mean treating
a sudden decline as something
expected that you should wait out.
Sudden trouble with balance or
vision, facial drooping, arm weakness,
difficulty speaking, or sudden
confusion can be signs of a stroke.
Call nine one one even if the
symptoms improve or disappear.
A TIA, often called a
mini-stroke, is an emergency too.
When I think about my grandmother,
I wish I had more help connecting
what was happening medically with
what we were seeing at home with her.
We knew she was changing.
What we needed was help understanding
it and figuring out how to
support her and recognize what
our family needed along the way.
Maybe you're in that place now.
Maybe things have settled after
a difficult few weeks, but
daily life looks different.
You're grateful that the person
is home and you're also realizing
how much more help they Both
of those feelings can be there.
You can be relieved, tired, grateful, and
grieving changes all at the same time.
I remember that feeling of watching
my grandmother change and I think
it's part of why I care so much
about families having support
while they're going through it now.
As you go through this week, pay
attention to one everyday moment.
What can the person manage?
Where do they get stuck?
What happens if you give them more time?
Simplify the task or offer a
little help getting started.
And pay attention to what
that moment asks of you.
If getting ready now takes an extra
hour or you can't safely leave
the person alone while you finish
something else, that matters.
Your need for support belongs
in the care conversation too.
Next week we're talking
about mixed dementia.
We've spent these last few episodes
looking at different types of
dementia, but sometimes more than one
disease process is contributing to
the changes a person is experiencing.
We'll talk about what happens when
those pictures overlap and why that
can make things confusing and how
to keep finding useful ways to help.
Thank you for spending this time with me.
If you've recognized something from your
own family today, I hope this gives you
words for what you've been noticing and
a place to begin the next conversation.
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