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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.
I've spent years watching people move.
I watch how somebody gets out of a chair.
I watch where their feet are.
I watch what happens to their
trunk when they lean forward.
And one of the things that I've learned is
that physical function is a whole lot more
complicated than are they strong enough.
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?
So not that long ago, I was working
in an adult day program, and there
was this woman there who had the
hardest time getting up from her chair.
And when I say she had a hard time,
I mean, we could turn getting out
of a chair into an entire event.
You know what happens when you
see someone struggling, you
just really wanna help them.
So somebody would stand in front of
her and say, "Okay, scoot forward.
Bring your feet back.
Lean forward.
Put your hands here.
Now push.
Okay, stand up."
And she would just get
more and more stuck.
And so then we'd wanna help more because
clearly she needed more help, right?
So maybe we'd move her feet back for her.
Maybe we'd help her scoot
forward in the chair.
Somebody might even put a hand
under her arm and try to just
help her initiate that movement.
And pretty soon we've got a
whole production happening around
getting this woman out of a chair.
But I started noticing something with her.
Uh, if I walked up to her and I
held out my hand and I simply said,
"Come with me," she had a much
better chance of just standing up.
Not every single time.
I don't wanna make this sound like it
was some magic phrase, but it really
happened enough that you had to wonder.
Same woman, same chair, same legs.
She didn't suddenly get stronger
because I said, "Come with me."
So what was happening?
Well, now we're getting
into my wheelhouse.
We've been making our way
around the wheel of function.
We started with sensory, then we
talked about emotion, and today we're
talking about physical function.
And as a physical therapist,
this is where I live.
I've spent years watching people move.
I watch how somebody gets out of a chair.
I watch where their feet are.
I watch what happens to their
trunk when they lean forward.
I watch how they take that very first
step, and I notice when they hesitate
or when something hurts or when one
side is doing something different
from the other side of their body.
And one of the things that I've learned is
that physical function is a whole lot more
complicated than are they strong enough.
This woman is a perfect example of that.
She had the physical ability to stand.
We knew that because we'd
watched her do it many times.
But when we asked her to stand,
particularly when we started giving her
all kinds of instructions, her brain
had difficulty organizing the movement.
And there's a word for that,
and it's called apraxia.
Apraxia is difficulty carrying out
a learned, purposeful movement, even
though the person may still have the
physical ability needed to do it.
But forget the definition for
just a minute and imagine what
that might actually feel like.
You're sitting in a chair,
and I tell you to stand up.
You know what standing is.
You understand the words I'm saying.
Your legs are capable of supporting you.
They're strong enough, but
you can't quite figure out how
to get the movement started.
And now I'm standing in front of you
saying, "Stand up," and nothing happens.
So what do I do?
I say it again.
"Come on, stand up," and still nothing.
Well, now I'm thinking that maybe
you don't understand me, so I
start breaking it down for you.
"Scoot forward.
No, forward.
Bring your feet back.
Your feet back here.
Okay.
Now lean forward.
Push from the chair.
Stand up."
And I'm really trying to help
you, but think about what I'm
asking your brain to do now.
You have to listen to me, process
the words, figure out which part
of the body I'm even talking about.
You have to organize that movement.
You have to carry it out and then
somehow be ready for the next instruction
that already is coming at you.
I've taken something that used to be an
automatic movement, and I've turned it
into a six-step cognitive task for you.
And then I'm wondering why you're stuck.
I wasn't asking her to
explain standing to her body.
I was giving her a reason to move.
There was something familiar and automatic
about that invitation that sometimes
gave her access to a movement that she
couldn't find when we asked it directly.
Now, please don't hear me
saying, "If someone has apraxia,
just say, 'Come with me.'"
It worked for this woman in this instance.
Another person may need something
completely different, and that's
why I keep coming back to the wheel.
This isn't a bag of dementia tricks.
We're trying to understand what is
happening for the person in front of us.
And here's the honest thing.
That moment, her brain is trying
to take stand up and turn it into
an actual sequence of movement.
That's not her legs.
That's not strength.
That's her brain planning and organizing
movement, and that's really a different
spoke of the wheel, the cognitive spoke,
one we haven't gotten to yet, but we will.
But today, I wanna stay with what's
actually physical because even once
you set her brain's role aside, there's
still so much happening physically
that we don't even think about.
And this is also why I want you to
think much more broadly when you
hear the words physical function.
Okay?
We tend to think strength.
Can she stand?
Can she walk?
Can mom get off the toilet?
Can dad get himself out of bed?
And strength absolutely matters.
I'm a PT, I'm certainly not going to
tell you that strength doesn't matter.
But there's a whole lot that has
to happen before you successfully
get yourself out of a chair.
Your joints have to move enough to
get you into just the right position.
Your feet have to be in a
place where you can use them.
Your muscles have to
generate enough force.
You need to balance, you need
coordination, you need endurance, and
you need to know where your body is in
space, and your brain has to pull all
of that together at just the right time.
That's physical function.
Remember when I introduced the wheel, I
said, "If dementia is a brain disease and
the brain does everything, then dementia
has the potential to affect everything."
And that's exactly what I meant.
Your brain helps you stand up.
It helps you reach for your cup of coffee.
It helps you get a spoon from your
plate to your mouth without having
to even consciously calculate
where your hand needs to go.
It helps you put your
arm through a sleeve.
Movement is a brain function, too, and
this is why one of the most frustrating
things for care partners can be that
somebody can do something one minute
and seem unable to do it the next.
You watched mom get out of that
chair this morning, and now it's 4:00
and she needs your help, and you're
thinking, "Mom, you can do this.
You did this this morning."
And you're right, she did, but
here's the question I want you to
start asking: What is different now?
Maybe she's tired.
Maybe her knee is hurt.
Maybe this isn't the same chair that
she was sitting in this morning.
Maybe there's a lot going on in the room.
Maybe she's anxious about falling.
Maybe she didn't understand
what you were asking.
We tend to think function is something
we either have or we don't have, but
function can really fluctuate, and
you know this from your own life.
Think about getting out of a chair when
you feel great versus getting out of
the same chair after you've been sick in
bed for three days, or after a terrible
night's sleep, or when your back hurts.
You're still you.
Your legs didn't disappear, but
what you have available to you
in that moment is different.
And sometimes the environment
changes the physical demand too.
I can't walk into a room without
looking at the furniture.
It's just a habit I have now.
Those big soft couches you sink
into, hips low, feet out in front,
nothing firm to push from, ask a
completely different job of the body
than a firm chair with good armrests.
Same person, same
strength, different demand.
So if dad gets up fine from the dining
room chair but not from the couch,
that's not necessarily him declining.
Sometimes the couch really is
just that hard to get out of.
You know this for yourself, I'm sure.
Other times the clue is pain, and this
is one I really want you watching for
because the person living with dementia
may not be able to tell you, "My right
hip hurts when I put weight through it."
They don't have that language
capacity anymore sometimes.
And maybe they can't
identify where the pain is.
Maybe they can't find the words.
Maybe they don't connect
what they're feeling with the
question that you're asking.
But their body may tell you.
Maybe mom suddenly doesn't want to walk.
Maybe dad gets angry every time you
put his left arm into a short sleeve.
Maybe somebody who normally
gets out of bed suddenly wants
nothing to do with moving.
Instead of stopping at that, watch.
Does his face change
when you move that arm?
Does he grimace maybe?
Does he protect one side?
Does the same thing happen
at the same point in the same
movement every single time?
Is he moving differently
than he was yesterday?
And especially if there's
a sudden change in physical
function, pay attention to that.
A sudden new weakness, significant pain,
a change in walking, or even a new pattern
of falls is not something I want you to
automatically chalk up to the dementia.
That is something that may
need medical attention.
The wheel helps us ask better questions,
but it doesn't mean that everything
is dementia And then there's fatigue.
I think this is another place
where we can accidentally expect
consistency that the person's
brain and body just can't give us.
So maybe Dad dressed himself this morning.
It took a little longer maybe, but he did
it, and now it's 8:00 at night, and you're
trying to get him into his pajamas, and
he seems like he just can't do it anymore.
It would be really easy to think,
"Come on, you did this this morning."
But look at the day he's had.
His brain has been working all day
to process conversations, figure
out where things are, make sense of
what's happening around him, navigate
his environment, eat his meals,
interact with people, and respond to
everything coming at him all day long.
Things that used to happen automatically
may take a lot more effort now, and so by
nighttime, maybe his tank is just empty.
So tonight, maybe he needs more help.
That doesn't necessarily mean
that his ability is gone.
It just means that we're meeting
him where his function is right now.
And that brings me to something I think
is really important for care partners,
how much help is actually helpful?
Because I know why we jump in.
We care about the person.
We see them struggling.
We don't want them frustrated, and
sometimes we just need to get out the
door, if we're being honest, right?
Let's say Mom's putting on a
sweater, and she gets one arm
in, and then she just stops.
You wait a second.
Nothing.
So you find the other sleeve, and
you put her arm through it, and
you pull the sweater down, you
straighten it out, and we're done.
And some mornings, that's
exactly what needs to happen.
If you've got an appointment in 15
minutes, that is not the morning for
a 20-minute sweater experience, right?
But if we do that every time she
pauses, eventually she has fewer
opportunities to use the part of
dressing that she actually can do.
And so on a morning when we have a
little bit more time, maybe I just wait.
Maybe I bring the sleeve
to where she can see it.
Maybe I help her find the opening
and then just stop, and maybe
she gets her arm halfway through.
Great.
She participated.
I think sometimes we get so
focused on someone's independence
that we miss participation.
Can she dress herself
independently, yes or no?
Can he feed himself
independently, yes or no?
But there's a huge amount of
function between the yes and the no.
Maybe she can't dress herself, but she
can put her arm through the sleeves.
Maybe he can't prepare his
meal, but he can feed himself
once it's in front of him.
Maybe Mom can't complete her whole
morning routine, but she can still wash
her own face, and those things matter.
We're not trying to prove
independence for the person.
We're trying to preserve
participation in the person's
own life for as long as we can.
You've probably heard use it or
lose it, I use this all the time,
and there's some truth there.
Our bodies need movement and
opportunities to be used.
But I don't want you turning that into
another reason to feel guilty either.
This isn't about thinking, "Oh no,
I dressed Mom this morning, and
I'm making her lose her function."
No.
Some days you dress Mom.
Some days you need to get out the door.
What we're talking about is
about noticing opportunities.
Can she still participate?
What can she still do?
Where can I give enough help to
make the person successful without
automatically taking over the whole task?
So I want to take you back to that
adult day program just one more time.
Picture this woman sitting in the
chair, and we're standing around
her trying so hard to help her.
Scoot forward, bring your feet back, lean
forward, push, stand, all the things.
And every single time we add another
instruction, she gets more and more stuck.
Nobody is doing anything wrong, right?
We were all just trying to help her.
But we're just giving her brain way
too much information, and it can't
use it very well in that moment.
It's overloaded, okay?
Then I walk over, and I hold out
my hand, and I say, "Come with me."
And she gets up.
I still love that story because
it reminds me that sometimes
more help isn't better help.
Sometimes more words
aren't better instructions.
The phrase less is more is so
useful in dementia care, okay?
Sometimes what looks like she can't do
this anymore really means we haven't
figured out how she can do this today.
And that's the question I want
to take with you this week.
Pick one physical thing that the person
you're supporting does every single day.
Maybe it's getting out
of a chair or the bed.
Maybe it's getting dressed.
Maybe it's walking to the bathroom
or just feeding themselves.
And just watch them.
Don't test them.
Just watch.
Where are they getting stuck?
What are the parts that they still can do?
What happens if you give them
just a little bit more time?
What happens if you use fewer words?
Does the setup make it easier?
Maybe it makes it harder.
Could they be tired?
Could something be hurting?
And then ask yourself, how much
help does this person actually
need to be successful right now?
Because sometimes supporting physical
function means strengthening something.
And sometimes it means changing the chair.
Sometimes it means treating the pain.
Sometimes it means giving more
help because today is a hard day.
Sometimes it means just backing off
and giving the person enough time
to find the movement themselves.
And sometimes it means you stop
saying, "Scoot forward, feet
back, lean forward, push, stand."
You hold out your hand and
you say, "Come with me."
And then you see what happens.
That's the physical spoke.
And that woman in the chair,
we're not done with her yet.
Next time we're going into the cognitive
spoke and she's coming with us.
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