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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.
There was sensory information, there
was history, there was emotion,
there was a physical response.
Several spokes, one person, one moment.
That's the wheel.
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.
Can I tell you a story?
So this one goes back quite a few
years when I was working at a, as a
physical therapist at a veterans home.
I spent time on the long-term care side of
that facility, and there was one gentleman
there who wasn't walking anymore, but he
was still quite mobile in his own way.
He used a wheelchair, and he could propel
himself around the unit independently.
So you'd see him moving through the
halls, going wherever he wanted to
go, just kinda doing his own thing.
But every once in a while, this
gentleman would end up on the floor,
and of course, we call them falls.
That's what you call it when somebody
is in a wheelchair one minute, and
they're on the floor the next, right?
So initially, that's how we looked at it.
We had a gentleman who was having
recurrent falls from his wheelchair,
and we needed to figure out why.
Except something about these
falls was pretty strange.
Uh, they weren't happening when
you might expect them to happen.
He wasn't necessarily reaching
for something at the time or
trying to transfer himself.
Uh, he wasn't sliding
forward in his chair.
It wasn't like he was losing his
balance while trying to do something.
Nothing was really adding
up, um, but there seemed to
be something else happening.
Because after a while, we started
noticing that these falls tended
to happen around loud noises.
So maybe somebody let a heavy door close
behind them or slammed a cabinet shut.
You know, those sounds in a facility
that happen all around us, and
most of us barely even notice it.
You know, something bangs, you look
up for a second, and then you go right
back to whatever it was you were doing.
Well, he noticed, and sometimes when
one of those sounds happened, you
would actually hear him yell, "Hit the
deck," and then he'd go to the floor.
Now, picture that for a second.
He's sitting in his wheelchair.
There's a sudden loud bang somewhere
nearby, and before anyone really
has time to process what happened,
this man is getting himself to the
floor and yelling, "Hit the deck."
He wasn't falling.
He was taking cover.
And once we understood more about him,
it really did start to make sense.
Remember, I was working at a veterans
home, and this gentleman had severe PTSD.
I don't know all of the experiences
from his past that were connected
to those sounds, and I don't really
need to fill in those blanks.
They belong to him.
But what I did know was that when I heard
a cabinet slam, I heard a cabinet slam.
He heard something very different.
And I think that's where I really
wanna start our conversation today,
because last time we talked about the
sensory spoke on our wheel of function.
We talked about how the brain
takes in information through sight,
through sound, touch, taste, smell,
and all those sensory experiences.
Well, here was a sound, sensory
information, but the story didn't just
end with his ears hearing a loud noise.
His brain did something
with that information.
That sound had meaning to him, and it
was connected to an emotional response,
and that emotional response was powerful
enough to change what his body did next.
And so he went from sitting
in his wheelchair to getting
himself on the floor.
So was that sensory?
Yeah.
Was it emotional?
Absolutely.
Did it affect his physical function?
You bet it did.
And now we're starting to see why
I keep telling you this is a wheel
I think sometimes when we talk
about emotion in dementia care, we
put it into a separate category.
We have memory, and here's walking,
and here's communication, and over
here somewhere, those are the emotions.
And it's not really how any
of us function though, right?
Think about the last time you were
really anxious about something.
Maybe you were waiting for test results.
Maybe you had a difficult conversation
that you knew was coming up.
Maybe something was going
on with one of your kids.
Could you concentrate the
same way you normally do?
I know I can't.
I can read the same paragraph
three times and realize I have
absolutely no idea what I just read.
Or think about when you're
in a hurry, for example.
You're already late, you're trying
to get out of the house, your keys
are nowhere to be found, and you're
getting more and more frustrated
because every minute you spend looking
for them makes you later and later.
And then somebody walks into the room
and just starts asking you questions.
How well are you processing
those questions at that moment?
Probably not very well.
Nothing is wrong with your
ability to understand language.
You haven't suddenly lost the
ability to find your keys.
Your emotional state is affecting how
well you can use those abilities that
you already have, and that is function.
And the same thing happens with someone
living with dementia, except now imagine
that the brain is already working harder
to process information and sequence a
task, find a word, understand what's
happening, or figure out what comes next.
And then add fear or add embarrassment or
frustration or grief or, uh, many things.
It makes sense that function might change.
So one of the questions I want us to
start adding to the wheel is, what
might this person be feeling right now?
We talked about showers the last
episode, so let's stay there for a
minute because I think it's a really,
really good example of how these spokes
start to interact with each other.
Imagine that you're helping
your mom get ready for a shower.
You've already turned on the water.
You're thinking about
what needs to happen next.
Maybe you've got the towels out, and
clean clothes are all ready to go, and
you're trying to keep things moving
because honestly, you have six other
things that need to happen today.
You reach for the bottom of her shirt
and help to take it off, and she grabs
the shirt and pulls it back down.
And so you say, "Mom, we're
getting ready for your shower."
And so you reach again, and this
time she pushes your hand away.
Now, maybe you're thinking, "Here we go.
We do this every time."
So you try to reassure her.
"It's okay, Mom.
You're fine.
It's just a shower."
But I want you to stop there for
a second and move yourself over
to her side of the bathroom.
Maybe she doesn't understand why
you're taking her clothes off.
Maybe the room feels cold to her.
Maybe the shower sounds really
loud and it echoes in the bathroom.
Maybe she can't tell where
the edge of the tub is.
Maybe she doesn't remember that
you told her five minutes ago
that it was time for a shower, so
she's completely caught off guard.
And now someone is
reaching for her clothing.
What might that make her feel like?
What might you feel like?
Because if the answer is fear,
suddenly pulling her shirt back
down makes a whole lot more sense.
And now think about what
happens if I keep pushing you.
"Come on, Mom, we have to get this done.
There's nothing to be afraid of."
I'm responding to the task, and she's
responding to the fear, and we're not
even having the same conversation,
and that's the emotional spoke.
Sometimes before I can help somebody with
a shower or whatever it is that we're
gonna do, I have to help them feel safe
enough to take the shower or do the task.
Those are two very different things.
And this is where dementia gets really
tricky because as a care partner,
you may know exactly what is true.
You know she's safe.
You know nobody stole her purse.
You know she's already home.
You know her mother is
not waiting for her.
And because you know those things,
it's really natural to want
to explain them to the person.
And let's say your dad suddenly
says, "I've got to get home.
My mother's gonna be worried sick."
And you know that his
mother died years ago.
So maybe your first response is,
"Dad, Grandma died 20 years ago.
You don't need to go anywhere.
You're okay."
And maybe he looks at you like you're
crazy, or maybe he's devastated
because from his perspective, you
just told him that his mother died.
Or maybe he doesn't believe you at
all and becomes angry because you're
standing between him and the door.
We get so focused on correcting
the information that sometimes we
miss what's happening emotionally.
What if instead I wonder, why
does he need his mother right now?
Is he worried?
Does he feel like he's
somewhere unfamiliar?
Is home actually representing
something safe to him?
I may not know the answer to that
question, but I can respond to
what I see "You really wanna see
your mom," or, "You seem worried.
Come sit with me for a minute."
I don't have to pretend
that his mother is alive.
I don't also have to make him
agree with my reality before
I'm willing to comfort him.
The facts might be wrong, but the
feeling is still very real, and
that's a very important distinction.
Now, let's talk about anger for a
second, because this is one that can
be really hard when you're the person
standing on the receiving end of it.
Imagine for a minute that you wake up
in the morning and somebody else is
in charge of your entire day, right?
They tell you when to get up.
They pick out your clothes for you.
They tell you to take your medicine.
They tell you what to eat.
You start walking toward one room and
somebody says, "No, not that way."
And you reach for something
and hear, "Don't touch that."
You decide you want to go outside.
"No, you can't go out there right now."
And then you tell them you wanna go
home, and they say, "This is your home."
And let's add one more thing.
You're having trouble understanding
why any of these people think that they
get to make these decisions for you.
How long would it take
before you got angry?
It wouldn't take me very
long, I can tell you that.
And yet, when someone living with dementia
finally says, "Leave me alone," or tells
us exactly where to go, we sometimes
call that agitation, and maybe it is.
But maybe anger is the part we can see,
and underneath it is frustration and fear,
embarrassment, or just a very human desire
to have some control over your life.
That's why I don't want you memorizing
that anger means one particular thing.
It doesn't.
I want you wondering, why might anger
make sense to the person right now?
That's a much more useful question.
And here's another one.
Imagine you're in the bathroom and
somebody has to help you clean yourself.
Now just sit with that for a second.
You have been independent
your entire adult life.
You've raised children.
You've worked.
You've taken care of your home.
You've made decisions.
You've been the person other
people came to for help, and now
somebody is standing in the bathroom
waiting for you to pull your pants
down because you need assistance.
Maybe it's your daughter.
Maybe it's a nursing
assistant you've met twice.
Maybe you don't even completely
understand why you're in there.
Would you feel vulnerable?
I would.
Maybe embarrassed, maybe angry.
Maybe I'd tell them to get out.
And if somebody wrote in my chart, "Carlin
resistant to toileting assistance,"
that would technically describe what
happened, but it wouldn't tell you
very much about why it happened.
What if I'm trying to protect my dignity?
Now we have somewhere to go.
Maybe we give more privacy.
Maybe we cover part of the body while
we're helping with another part.
Maybe we just slow it down.
Maybe we ask permission before touching
instead of just starting the task.
Same person, same bathroom, same
physical abilities, but different
emotional experience, and potentially
very different function, right?
This one gets me because I
think we underestimate how
frustrating dementia can be.
Think about knowing what you want to say
and not being able to find the right word.
You know it's there, you can almost
feel it, it's on the tip of your
tongue, and somebody jumps in and
finishes the sentence for you again.
Or you're buttoning your shirt, and
you've done this 1,001 times, but your
fingers just aren't cooperating with
what your brain is asking them to do
at the moment, and someone sees you
struggling and says, "Here, let me
do it," and they finish it for you.
They're helping.
They really, really are.
But what did that
experience feel like to you?
And now imagine that that
happens every single day.
People are finishing your sentences, and
they're taking things out of your hands,
and they're correcting you, and they're
doing things for you because it's faster.
At some point, you might
just stop trying altogether.
And then someone says, "He
doesn't initiate anymore."
Maybe.
But I want us to at least ask
whether repeated frustration or
repeated experiences of failure
have become part of the picture.
Because remember, the spokes all interact.
And I want to shift here because I don't
want you leaving the episode thinking
the emotional spoke is all about fear
and anger and frustration and sadness.
Those are really important, but
they're not the whole spoke.
Emotion can actually support function too.
Think about how you feel when
somebody genuinely needs your help.
Feels pretty good.
There's something different
about being needed, right?
Maybe you're tired, maybe you weren't
planning on doing anything, but
somebody that you care about says,
"Could you come help me with this?"
And so you get up.
Purpose changed function.
And think about laughter.
Have you ever been exhausted and
stressed and completely done with
the day, and then somebody just makes
you laugh out of nowhere, and for
a moment, your whole body changes?
That's function too.
So when I'm working with someone living
with dementia, I don't only want to ask
what's making this hard, I also want to
know what makes this person light up,
what makes them proud, what makes them
laugh, what makes them feel useful,
what makes them feel like themselves.
Maybe a gentleman doesn't
want to do therapy exercises.
Believe me, if you call it
exercise, you're probably not
going to get them to do it.
But if he spent his whole life
fixing things, I'd ask him to
come help me look at something
down the hall that I need to fix.
Well, now he has a reason to move.
Or maybe a woman doesn't care about
the scheduled activity at 2:00.
It just doesn't interest her.
But she might have raised five children
and ran a household, and I put a
basket of towels beside her and say,
"Would you mind helping me with these?"
She's not completing an activity.
She's helping me, and
that's very different.
And that's what I mean when I say that
the emotional spoke can support function.
We're not just trying to remove distress.
We're creating opportunities for safety
and success and purpose and joy and
connection and belonging, and those
things matter too And then there's
something about emotion that I really
want care partners to hold onto.
Think about somebody you've met who made
you feel completely at ease, and you
might not even remember what you talked
about the first time you met this person.
You probably don't remember
what either of you was wearing,
but you remember thinking, "I
like being around this person."
And now think about the opposite.
Someone made you feel small or
embarrassed or uncomfortable.
Your spidey senses went up, and you
may not remember exactly what they said
anymore, but you do remember how you felt
when you were around them, and that's
what I want you thinking about here.
A person living with dementia may not
remember every detail of an interaction.
They may not remember that you
sat together or that you listened
to music yesterday afternoon.
They may not remember the
joke that you told them.
They may not be able to tell somebody
later, "Carlin came and helped me get
dressed, and she gave me enough time
to do the buttons all by myself."
But the fact that they don't remember
the details doesn't mean that
the ex- experience didn't matter.
They don't have to remember the
moment for the moment to matter.
Maybe what remains is a
sense of safety around you.
Maybe it's comfort.
Maybe the next time you approach,
their shoulders don't quite
tense up as much as they did.
That's relationship, and relationship is
still very much possible Now, before we
finish, we have to talk about you because
you're part of this whole wheel too.
Let's say it's eight fifteen in the
morning and you have an appointment
that you both have to get to at nine,
and it takes about twenty minutes to
get there, and you still need your
mom to get in the car, and she doesn't
even have her shoes on yet, and you've
already asked her three or four times.
And so you're standing in
the doorway saying, "Mom, we
need to get your shoes on.
We have to go."
And she says, "Go where?"
And so you explain it again, and she
starts looking for her purse, and you
tell her she doesn't need her purse.
And now she n- wants to know where her
coat is, and you can feel yourself getting
tighter with every minute that goes by,
and you look at the clock and you know
that it's just getting later and later.
You're responsible for getting both
of you there, and you're human, and
I'm not gonna tell you to stay calm.
That's not helpful.
But what I want you to notice is what
happens next because when you get anxious,
maybe your voice gets faster, maybe you
start giving more instructions, maybe
you start moving things along for her.
And now she's looking at you
thinking, "Why is she rushing me?
Where are we going?
What's happening?"
And the more anxious she becomes,
the harder it may be for her to
process what you're saying, and so
that's gonna make you later, and
that makes you more anxious, and
you see that loop that we're in.
Your emotional spoke and
hers are interacting at the
same time, and nobody failed.
Nobody did dementia care wrong.
We just need to recognize what's happening
so we have a chance to change something.
Maybe you sit down for thirty seconds.
Maybe you stop explaining the appointment.
Maybe you just hand her her shoes without
saying a word and just see what happens.
Maybe you decide that arriving five
minutes late is better than spending
the next twenty minutes trying to
recover from an argument, and that
is using the wheel I wanna take you
one more time to the veterans home.
Picture the gentleman moving himself
down the hallway in his wheelchair.
Staff are coming and going, people
are talking, maybe a cart is
moving up and down the hallway.
It's just an ordinary day on the
unit, and then bang, a cabinet shuts.
I hear a cabinet, but he doesn't
experience the sound the way I do.
His body reacts before any of us have
time to explain anything, and he screams,
"Hit the deck," and he's on the floor.
Before we understood him, we saw
a fall, but once we knew more
about the person sitting in that
wheelchair, the whole picture changed.
There was sensory information, there
was history, there was emotion,
there was a physical response.
Several spokes, one person, one moment.
That's the wheel.
Dementia didn't erase the life
that he lived before I met him.
His experiences still mattered.
His history still mattered.
His emotions still mattered.
He still mattered.
So this week, I don't want you trying
to diagnose everybody's emotions.
Just take notice.
Maybe there's a hard moment,
and you find yourself thinking,
"Why are they doing this?"
Before you try to fix it, ask, "What
might they be feeling right now?"
And maybe there's a
really good moment too.
They laugh, they help you with something,
they relax when you sit next to
them and hold their hand, they start
singing when a familiar song comes on.
Notice that too.
And ask yourself, what's happening
emotionally right now and how is it
changing what the person is able to do?
Because that's the emotional spoke.
And little by little, as we put these
spokes together, I think you're going
to start seeing function differently.
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