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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.
And now while she's working on that,
here I come with more information, and
the whole time I'm thinking I'm helping.
I really did.
Does that make sense?
I'm thinking she's having trouble
getting up, so I'm gonna break it down
and make it easier for her, except
maybe I wasn't making it easier.
Maybe I was giving her brain more to do.
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?
Actually, I wanna go back to the
story that I told you last week
Remember the woman at the adult day
program where I worked, um, who had the
hardest time getting out of her chair?
Well, we would try to help her
because that's what you do when
somebody is struggling, right?
We'd say, "Okay, scoot forward.
Bring your feet back.
Lean forward.
Push.
Now stand."
All good instructions.
I mean, I'm a PT.
I can tell you that those are
the things that we look for when
somebody's getting up out of a chair,
except they weren't helping her.
And the more we talked, the
more stuck she seemed to get.
But then I would come over and hold
out my hand and say, "Come with me."
And sometimes she would get up.
Same woman, same chair, same legs.
Last week, I used this story to talk
about physical function, and we talked
a little bit about apraxia, where the
physical ability may still be there, but
the brain has difficulty organizing and
carrying out that purposeful movement.
And I wanna go back to that because
there's another layer to that story.
Actually, there's probably several
layers to that story because
when I told her, "Scoot forward,"
what did her brain have to do?
She had to notice that
I was talking to her.
She had to pay attention
to what I was saying.
She had to process those words and
figure out what scoot forward meant,
and then she had to somehow translate
those words into action with her body.
And now while she's working on that,
here I come with, "Bring your feet back.
Okay, now do something
with that information.
Lean forward."
Here comes more, "Push."
And then more information, "Stand."
And the whole time I'm
thinking I'm helping.
I really did.
Does that make sense?
I'm thinking she's having trouble
getting up, so I'm gonna break it
down and make it easier for her.
Except maybe I wasn't making it easier.
Maybe I was giving her brain more to do.
And I think that's a good way to start
talking about cognition because when
we hear the word cognition, especially
when we're talking about dementia,
everybody immediately thinks memory.
Can she remember my name?
Does he know what day it is?
Did she remember that
she already ate lunch?
And yes, memory is cognition, of
course it is, but cognition is
so much bigger than just memory.
It's how we pay attention to what
matters and tune out everything
else in our world that doesn't.
It's how we process information, how
we get started on something, how we
know what comes next, how we solve a
problem when something doesn't seem to
go the way that we expected it would.
And all of this is happening all day long
in almost every single thing that we do.
We just don't notice it.
I mean, think about getting
dressed this morning.
How much time and how much
thought did you really give it?
You probably didn't stand in front of
your closet thinking, "Okay, first I
need to recognize the object as a shirt.
Now I need to determine which
opening is for my head."
No, you just put your shirt on.
But your brain did all of that.
You had to decide it
was time to get dressed.
You had to get started.
You had to choose something to wear.
You had to know what went in
first and what went on next.
You had to figure out which way the shirt
went, and if it got a little bit twisted,
you had to notice that something wasn't
quite right, and then you had to fix it.
And that's a lot going on there.
So now let's say that your mom is
standing in her bedroom, and you've
laid out clothes on the bed, and you
say, "Mom, go ahead and get dressed."
And she just stands there.
What do you do?
Well, you probably say it again,
"Mom, you need to get dressed."
And still nothing.
Maybe she picks up the shirt and looks at
it and then puts it back down, and this
is where it's really easy to jump all the
way to she can't dress herself anymore.
Maybe.
But I don't know that yet.
I wanna know what happened between,
"Here are your clothes," and,
"Mom isn't getting dressed."
Where did it all fall apart?
Maybe she couldn't easily see the
clothes because they were laid out on
the bedspread without enough contrast.
We talked about that when
we talked about sensory.
Maybe she knows exactly what you want her
to do, but you are standing there waiting,
and she knows she's struggling, and so
she's embarrassed or she's frustrated.
We talked about that when we talked about
emotion and what that can do to function.
Maybe her shoulder hurts when
she tries to put her shirt on.
Maybe she doesn't have the balance to
stand and pull her, her pants anymore.
That's the physical piece.
But maybe she's looking at
those clothes and she just can't
figure out how to get started.
That's different.
What happens if instead of saying,
"Get dressed," I hand her the shirt?
Maybe she puts it on.
Well, that tells me something, doesn't it?
She can still do something with
the shirt once it's in her hands.
Maybe the part that she was having
trouble with was just the getting started.
That's initiation.
Or maybe she puts her shirt
on and then stops again.
Okay.
What happens if I hand her her pants?
Well, maybe she puts those on, too,
and now I'm interested because if I
had stopped at Mom can't dress herself
anymore, I would have missed all that.
She may not be able to independently
organize the entire process of getting
dressed from beginning to end anymore,
but that is very different than saying
she can't participate in dressing.
And this is where cognition becomes
such an important part of function.
Cognition is called the driver of function
for a reason, and it's because the brain
is constantly taking in information,
it's figuring out what it means, and
then it's deciding what to do with it.
And when those abilities start to
change, everyday things that look
incredibly simple to us can become really
complicated to somebody with dementia.
Even brushing your teeth, think
about how often you give somebody a
whole string of instructions, okay?
"Go brush your teeth, wash your face,
comb your hair, and then come out
here because we need to get dressed."
I don't know about you, but there are
mornings in my own brain that just
I don't want that many instructions.
And so imagine if your ability
to hold onto information is
changing, your processing is
slower, it's harder to filter out
the television in the other room.
Maybe you got the first part of what I
said, but by the time I got to, " We need
to get dressed," the beginning is gone.
And then I'm standing there wondering
why you're not doing what I asked.
What happens if I just stop talking
and hand you the toothbrush?
Maybe you start brushing your teeth.
Well, there you go.
You didn't suddenly remember
how to brush your teeth because
I handed you a toothbrush.
The toothbrush gave your brain
a different way into the task.
And I think that's what I was
doing with the woman in the chair
when I said, "Come with me."
I didn't make her stronger.
I didn't fix her apraxia.
I changed what I was
asking her brain to do.
And sometimes that was able to change
what she was able to do in that moment.
This is also where I wanna pull back
a little bit because we've spent the
last few episodes taking the wheel
apart, and I did that on purpose.
We looked at sensory by itself,
and then we looked at emotion.
Last week, we looked at physical function,
and now we're talking about cognition.
But nobody actually lives that way.
Your mom doesn't wake up and say,
"Today, I think I have a cognitive
problem at breakfast and a sensory
problem around lunchtime," right?
It's happening all together.
Go back to getting dressed for a second.
Maybe Mom didn't sleep well last night, so
she's tired before you even get started.
The television is on.
Her shoulder hurts.
You have a doctor's appointment at 10:00,
and you're watching the clock because you
know it takes twenty-five minutes to get
there, so your voice gets a little faster.
"Mom, come on, we've gotta get dressed.
Here are your clothes.
Put your shirt on.
Wear your shoes."
And now she's looking at you.
You're getting anxious.
She definitely feels that.
There are six pieces
of clothing on the bed.
The television is talking.
Her shoulder hurts, and we're
standing there thinking,
"Why won't she get dressed?"
Well, where would you
like me to start, right?
That's the wheel.
And I think this is the part I was trying
to figure out all those years ago when
I was trying to figure out a way to
make it all make sense to me because I
knew that all of these pieces mattered.
I knew sensory mattered.
I knew mattered.
Obviously, as a physical therapist,
I knew the body mattered.
I knew cognition was changing.
But knowing all of those things
separately didn't always help me
when I was standing in front of an
actual person trying to figure out
why something wasn't working for them.
I didn't know how they fit together
at the time because what we see
is usually the end result, right?
Mom didn't get dressed.
Dad fell.
She refused the shower.
He won't get in the car.
She won't eat.
These are all the things that we
see But they don't tell us the
why, and that's really what I
want the wheel to help you to do.
I don't want you walking around trying
to diagnose which spoke is broken.
Please don't do that.
I want to help you slow
down enough to get curious.
If Mom isn't getting dressed,
okay, what is she seeing?
What is she hearing?
Is there too much going on around her?
How is she feeling?
Does she seem rushed,
frustrated, embarrassed, afraid?
What is her body able to do?
Does something hurt?
Is she tired?
Is her balance changing?
And then what are we
asking her brain to do?
Are we asking her to initiate something?
Remember three instructions,
figure out a sequence, make
a decision, solve a problem.
Maybe several of those things are
happening all at the same time.
And once I start looking at it that way,
I can start experimenting a little bit.
What if I turn down the TV?
What happens?
What if I stop talking
about the appointment?
What if instead of laying out
six things, I hand her one?
What if I sit beside her
instead of standing over her?
What if I help with that painful shoulder?
What if I just wait a little longer?
And maybe none of that works.
That happens too.
This is not me promising you that if you
ask the wheel the right question, suddenly
everything is going to go smoothly.
I wish.
Everybody wishes that.
But now we have somewhere to look.
We're not stuck at she won't, okay.
We're asking, "What is
making this so hard?"
And I think those two questions
take us to very different places.
One of them puts the problem on
the person, and the other gives
us something to investigate, and
sometimes something to change
That was the whole reason I needed
this wheel in the first place.
I didn't need another list of
things dementia can affect.
I needed something I could actually
use when I was with the person,
something that reminded me to
look beyond what I was seeing.
So this week, I want you to try that.
Don't pick the hardest thing happening
in your house right now, okay?
Give yourself a break.
But pick something small.
Maybe getting shoes on has
become a little harder.
Maybe your person stops
halfway through lunch.
Maybe getting out of a car takes a
little bit longer than it used to.
Maybe they stand in front of the sink, and
they don't seem to know what to do next.
Just watch for a minute, okay?
Where does it start to fall apart?
What do you see?
And instead of immediately asking,
"How do I get them to do this?"
see what happens if you ask, "What
is making this harder right now?"
What are they taking in?
What might they be feeling?
What is their body being asked to do?
What is their brain being
asked to figure out?
And then maybe the most useful question
of them all: what can I change?
Because we can't ask the brain living
with dementia to stop having dementia.
We can't do that, but we can change
what's happening around that brain.
We can change our words.
We can change the setup.
We can change the pace.
We can change how much help we give.
We can change the expectation,
and sometimes that changes the
outcome, and sometimes it doesn't.
But either way, we're seeing
that person differently, okay?
So let me take you back one more
time to that woman in the chair.
Scoot forward, bring your feet
back, lean forward, push, stand.
More words, more information, more
help, and then she gets stuck, and then
I hold out my hand, and I say, "Come
with me," and sometimes she gets up.
Same woman, same chair, same legs, but I
changed the demand, and that changed what
she was able to access in that moment.
And that, to me, is why cognition
is the driver of function, and
it's why the wheel matters.
Because once we stop looking at only
what the person is doing and start
getting curious about what might
be underneath it, dementia starts
to make a whole lot more sense.
Not easy, but understandable, and
when something makes a little more
sense, we have a better chance
of figuring out what might help.
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