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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 isn't one dementia tip that
works for every person, every day, in
every situation, and collecting more
and more tips can only take us so far.
We need a way to think
when the tip doesn't work.
We need a way to notice what's
happening, look beyond the
surface, try something that fits.
And then we need to pay attention to the
person's response to all those things
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.
last week I told you about a
woman who became agitated every
morning when staff would try to
help her get washed or dressed.
And if we only looked at what was
happening right in front of us, we might
say she was refusing care, or she was
resistant, maybe even uncooperative.
But the OT working with
her didn't stop just there.
She could see that something about the
morning routine just wasn't working for
the woman, so she created a playlist
with music that the woman liked, and
staff started playing it about twenty
or thirty minutes before they would
approach her, and everything changed.
She was calmer.
She was more open to help.
She could participate in the
parts of getting ready that
she was still able to do.
Now, we talked about the story last week
because it's such a good example of how
the environment can support function.
But there's another piece of that
story that I wanna come back to.
Her agitation was information.
Something about that moment just
was not working for her, and since
she couldn't necessarily explain
that because she no longer had the
language, her response showed it.
But then the music would come on,
and her response changed immediately,
and that was information for us, too.
So let's talk about that for a second.
We use the word behavior all the
time in dementia care, and usually
it's attached to something that we
want the person to stop doing, right?
How do I stop him from pacing?
How do I get her to stop asking the
same question over and over again?
How do I get him to stop trying to leave?
And I understand why we ask those
questions because when you've answered
the same question fifteen times or
more, or you're trying to keep somebody
from falling, or you have to get out
the door for an appointment, you're
not standing there thinking, "Hmm, I
wonder what this behavior means," right?
No.
You're trying to get through
something in the moment, and
sometimes you need to act right away.
If somebody is about to fall or walk into
traffic, safety absolutely comes first.
We're not gonna pause for a
long analysis while something
dangerous is happening, right?
But once the immediate danger has
passed, we still need to look at what
brought us to that moment, right?
Otherwise, we may stop the behavior
without ever understanding what
the person needed, and then
history will repeat itself.
Let's say someone keeps standing up during
lunch, and you help them sit back down,
and a minute later they're up again, and
you remind them that it's time to eat,
and you tell them that they could fall.
Maybe move the chair closer to
the table, and then guess what?
They stand up again.
And if we only focus on what we can
see, the goal sometimes becomes keeping
them in the chair, and that's it.
But what if they need to use the bathroom?
What if their hip hurts?
Maybe the dining room is too loud,
or they don't recognize the food,
or they've forgotten why they're
sitting there in the first place.
Maybe they see someone that they
know across the room, and they're
trying to go to follow them around.
A lot of things could be going on.
And yes, the standing is real.
The fall risk may be real too,
but sitting them back down doesn't
necessarily address whatever made
them get up in the first place.
And that's the shift I'm asking
you to make, not to ignore what
the person is doing, but to stop
treating it as the entire story.
Because the person may not be able to
say, "My hip hurts in this chair," or,
"There's too many people talking, and
I can't figure out what's happening."
You know, they may not know how
to explain that they can't see
the food clearly or remember what
they're supposed to even do with it.
And so they may respond to how
the moment feels, not what we see
as the reality of the situation.
And so they stand up, and they maybe
push something away, or they leave,
and they ask the same question again.
Or they get quiet, or
they raise their voice.
That response gets our attention,
and it tells us to look
closer at what's happening.
And this isn't only about
big, obvious things that we
usually would call behaviors.
Sometimes the change is
really, really quiet.
Maybe the person stops
finishing their meals.
They start wearing the same clothes every
single day and refuse to change them.
Um, they don't join in
conversations like they used to,
or they're sleeping a lot more.
Or suddenly they need help with
something that they were able
to do on their own last week.
Those changes matter too.
Actually, success can
give us information too.
The woman with the playlist became
more engaged when the music came on.
Someone else may start moving when you
stop explaining and simply just hold
out your hand and say, "Come with me."
A person who barely eats at the dining
room may finish the whole meal at
a really quiet table tucked away.
We wanna notice those moments
because they show us what's helping,
and that's what I mean when I
say that change is communication.
I don't mean that there's always
one hidden answer that you should
be able to immediately figure out,
but there may be several things
happening all at the same time.
And sometimes you'll try three
different things, and you still
have no idea what changed.
That's life.
But the change gives us a reason to
pause for a second before we decide
we already know what it means.
We don't wanna jump to conclusions.
And instead of being, "Well, she's
just stubborn," maybe we ask, "Why
is this harder for her today?"
Or instead of saying, "He's just doing
this for attention," maybe we ask,
"What does he need from me right now?"
Or instead of deciding that the
person can't do something anymore,
maybe we take a minute and look
at what changed around the task.
And this is where everything that we've
been talking about over the last several
episodes starts to come together.
Nobody is going to hand you a note
that says, "My sensory system is
overwhelmed," or, "I can't sequence
through the steps of getting dressed."
No.
You're gonna have to notice that
person pulling away, or shutting down,
or pacing, or just suddenly needing
more help, and that's what brings us
to the Wheel of Function framework.
The wheel helps us look
beneath what we can see.
Is there something sensory going on?
Could it be emotional or physical?
Is cognition getting in the way?
Is the environment asking too
much of the person right now?
Are we asking too much
of the person right now?
We're not trying to diagnose
the moment, we're just trying
to find a direction to go.
And maybe the room needs to be quieter.
Maybe pain needs to be
taken more seriously.
Maybe we need to stop explaining
and just show what we mean.
Maybe the task needs to be broken
down so that they can do just
one individual part at a time.
That is what the wheel is for.
It helps us understand what may
have changed, and then it points
us toward the support that may
help the person be successful.
But even with the wheel, there are
gonna be times when you're not sure.
More than one spoke may be involved.
In fact, probably there are.
And sometimes what worked
yesterday isn't gonna work today.
And you may try one thing and
watch what happens and realize
that you need to just try something
else altogether and scrap it.
And that doesn't mean that you failed.
It means you got more information.
And honestly, that's why the wheel
couldn't be the entire system here.
Care partners need a way to use what
the wheel is showing them, especially
when the situation keeps changing or
the first thing they try doesn't work.
And that's how the signal guide
navigation system came together.
The wheel sits right at the heart of it.
Around it is a process that we can return
to when we're unsure of what to do next.
We know the waters we're navigating.
We drop anchor before we act,
we read the signal, we choose
our course, and we look ahead.
And through all of it, we protect
the precious cargo by keeping
the person at the very center.
Now, please don't worry about
remembering all six of those.
I just threw a lot of new language
at you, and we're gonna slow down
and spend some time on each part.
But for today, the important
piece is why this process exists.
There isn't one dementia tip that
works for every person every day in
every situation, and collecting more
and more tips can only take us so far.
We need a way to think
when the tip doesn't work.
We need a way to notice what's happening,
look beyond the surface, try something
that fits, and then we need to pay
attention to the person's response
to all those things because their
responses give us more information.
And we may stay the course or we may
need to adjust, and that is navigation.
And the first step happens long
before we choose what to do.
We need to understand what
we're actually navigating.
And that means knowing the diagnosis,
but it also means knowing the person,
knowing their history, their routines,
what they enjoy, what they've always
disliked, what they can still do,
what has recently changed, and what's
happening around them right now.
That is the first part of the
navigation system: know the waters.
And that's where we're going next.
But for now, when something changes, try
not to decide too quickly what it means.
Just notice it.
What happened?
What might it be telling you?
And if you try something different, what
does the person's response tell you next?
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
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