Navigating Dementia

So think about what you
might be doing right now.

Maybe you're driving and listening to me.

Maybe you're folding your laundry.

Maybe you're sitting at your
kitchen table with a cup of coffee.

And without even having to think about
it, your brain is taking in an enormous

amount of sensory information all at once.

And sorting through all of
those things all day long.

And most of the time you don't even notice
it's happening until something changes.

Speaker: 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?

I was once asked to evaluate a
resident because he kept falling.

Uh, this was in a long-term care
setting that I was working in.

And as a physical therapist, that's
a pretty normal referral for me.

Uh, someone's falling, so you
start looking at the, all the

things that you would expect.

Like, you know, what's their strength
look like, their balance, their

walking, transfers, things like that.

Maybe there's been a medication change.

Maybe they're getting
dizzy when they stand up.

Um, maybe they're losing their
balance when they're turning.

So I went in, and I did my
evaluation, and honestly, his

strength was really functional.

His balance was functional.

His gait was functional.

There wasn't really anything obvious
in my assessment that explained why

this man kept ending up on the floor.

So I started asking more questions.

Remember?

I told you I do that a lot.

Um, not just, you know, how is he
falling, but when is he falling?

Where is he falling?

And that's when things
started to get interesting.

So most of these falls were happening
in his room, and when I was looking

at the timeline, they tended to happen
in the morning after he'd gotten up

to go to the bathroom, um, or sometime
in the afternoon when he, when he

was heading to his room for his nap.

Um, so I went into his room, and I
looked around, and here's what I found.

His curtains were drawn,
and they were dark maroon.

And then looking at his bed that sat
directly in front of the window or beside

the window, the bedspread was maroon.

And then looking at the floor mats next
to his bed, because of course he's falling

and so they have floor mats, guess what?

They were maroon.

So everything around that bed
was basically the same color.

Um, and suddenly, I realized something.

This man was not falling.

He was sitting down two feet too soon.

He was trying to sit on his bed, except
he wasn't where he thought he was, and

all of a sudden, this wasn't primarily
a strength problem, and it wasn't

primarily a balance problem either, and
it really wasn't even a walking problem.

His sensory spoke was bent.

So what does that mean?

Well, in the last episode, I introduced
something I call the wheel of function,

and I told you the story of how this
framework came together and why I needed a

way to connect all of the different pieces
of dementia care so it made sense to me.

We have so much information.

We know about memory.

We know about behaviors.

We know about communication.

We hear about person-centered care
and safety and the environment

and all these different things.

But when you're standing in someone's
bedroom trying to figure out why they keep

falling, you need more than information.

You need to know what to look for, and
that's what the wheel helps us to do.

So today, we're going to start with
our very first spoke, sensory function.

And when I say sensory, you
may immediately think the five

senses that we all learned
about when we were kids, right?

So sight and hearing and smell, taste,
touch, and yes, all those things matter.

But I want you to think about
sensory function a little

differently in this case.

Our senses are constantly giving our brain
information about the world around us.

The eyes are not just seeing.

Your ears aren't just hearing.

Your skin isn't just feeling.

All of those systems are sending
information to your brain at once,

and then your brain has to figure out
what that information actually means.

So think about what you
might be doing right now.

Maybe you're driving and listening to me.

Maybe you're folding your laundry.

Maybe you're sitting at your
kitchen table with a cup of coffee.

And without even having to think about
it, your brain is taking in an enormous

amount of sensory information all at once.

You're seeing where objects
are in relation to one another.

You are hearing my voice while
also deciding which background

sounds you can ignore.

You know where your body is positioned.

You know whether or
not you're hot or cold.

You know whether something that you're
touching is soft, or is it rough, or

is it wet or sharp or comfortable,
or is it uncomfortable to you?

And your brain is sorting through
all of those things all day long.

And most of the time you don't even notice
it's happening until something changes.

Dementia is a disease of the brain, and
the brain doesn't just store memories.

It helps us make sense of everything
that's coming in from the world around us.

So when the brain changes, someone's
experience of their environment

can significantly change too.

So that brings us back to my resident.

I could see the bed, I could see
the floor, I could see the mat on

the floor and the window behind
the bed, and my brain could easily

distinguish one from the other.

I could see that, but I couldn't assume
that his brain was interpreting that

visual information that the same way
mine was There wasn't enough contrast,

so when he backed up toward the bed,
the information that his brain was

getting wasn't giving him accurate enough
picture of where that bed actually was.

So he would just sit, and
it was two feet too soon.

So think about that.

What would have happened if I had
just stopped at the word falls?

I might have decided that he
needed more strengthening,

maybe some balance exercises.

Maybe I would recommend that
someone walk with him all the time.

Um, I'm sure that he would over and over
and over again be told to be careful,

and then all the things that we say.

"Make sure you back up all the way.

Feel the bed behind your legs.

Don't sit yet."

All reasonable in most situations, but
none of it actually addresses this man's

actual problem, because we would have
been trying to straighten the wrong spoke.

This is where I want you to start
using the wheel differently.

When something happens that
doesn't make sense, try not

to stop at what you can see.

So if someone refuses a shower,
for instance, or maybe they won't

eat, uh, someone keeps reaching for
things that aren't there, someone

suddenly becomes upset in a busy
restaurant, someone stops halfway down

the hallway and won't keep walking.

Those are all things that we notice.

Very easy to point out, but they're
not necessarily the explanation.

They're clues.

So instead of immediately asking,
"How do we stop this behavior?"

I want you to get curious.

What is their brain actually
seeing, hearing, smelling,

tasting, and feeling right now?

Because their experience may
be very different from yours.

Let's take something I hear all
the time, bathing, for example.

Maybe the person that you're caring for
has always taken a shower, and it's been

no problem, and now suddenly they're
resisting, and you can't figure out why.

They won't get in.

They become upset.

Maybe they yell or push your hand away.

And so from your perspective, this
makes absolutely no sense to you.

It's a shower.

They've taken thousands of
showers in their lifetime.

So, you know, what's,
what is happening here?

But what if the shower doesn't
feel like a shower anymore?

Think about the sensory experience here.

So the bathroom may echo for them.

If the fan is running, that's
one noise, and then there's

the water that hits the skin.

What does that feel like?

For a lot of people, especially as
we age and we have thinner skin,

that might feel like needles to them.

And the temperature changes, and when
they get undressed, they may be cold.

And if we're thinking about the
floor, well, if the floor is wet,

it might look very different to
them, and maybe there's a glare.

There may be a toilet against a white
wall and a white grab bar next to a white

shower, and there's no contrast there.

And someone's talking to them and t- and
touching them and telling them what to

do, and there's a whole lot of sensory
information for the brain to process.

So what we call refusing a shower may
actually be the person communicating

that this does not feel safe to me.

And that doesn't mean that the sensory
changes explain every difficult shower.

Remember, we're just
looking at one spoke today.

There are other spokes in this wheel.

But sensory is one of the
places that we start with.

Visual contrast is one of
those simple things that can

make a tremendous difference.

Think back about the maroon
in my resident's room.

Now, looking around in the environment
of the person that you're caring

for, can they clearly see where one
surface ends and another begins?

Okay.

Can they see the toilet
against the floor and the wall?

Can they see the food
that is on their plate?

Can they distinguish the
chair from what's behind it?

Are there dark areas on the floor that
might look like a hole or a step for

them to have to step over, or maybe
a change in, in height for them?

Again, don't assume that just
because you can see something

clearly that they are interpreting it
clearly, too, and that's the shift.

And sensory isn't just
about vision, right?

Think about sound, for example.

You may be talking to someone while
the television is on and somebody is

washing dishes, and there's clattering
in the kitchen sink, and then someone

else is having a conversation nearby,
and maybe a dog's barking as well.

Your brain can filter out most of
that and focus on one conversation.

But their brain may not be
able to do that anymore.

In fact, it probably can't.

So when they don't answer your question
right off or they answer something

completely unrelated that doesn't make
sense, or maybe they even get irritated

and just walk away, our first assumption
might be, "They're not listening to me."

And maybe they're not, or maybe
their brain is just trying to

process through six different
sounds at once and can't figure out

which one is the most important.

Okay?

So what do we do with that?

Well, one thing we can
do, turn off the TV.

Okay?

Move somewhere quieter for them.

Get their attention
before you start speaking.

Then see what changes.

That's using the wheel.

Now, don't forget what
the body is feeling here.

Sight and sound are probably the easiest
sensory changes for us to notice, but

they aren't the only information that
the brain is trying to interpret.

Okay?

Think about touch, for example.

Let's say that you're helping someone
get dressed in the morning, and you reach

over and you take their arm, and you
just start to pull up their sleeve, and

to you, that touch makes perfect sense.

But that's because you
know what you're doing.

You know what's coming next.

But do they know what's coming next?

What if their brain hasn't
put those pieces together yet?

From their perspective,
someone just grabbed their

arm and started pulling on it.

So if they pull away or they yell or
maybe even swat at you, take a swing, we

might think, oh, they're resisting care.

But look at it through the
sensory spoke for just a second.

Their response might actually make a
whole lot more sense if we do that.

And then there's temperature.

Think about back to the
shower example that I used.

Water that feels comfortably warm to
you may not feel the same way to them.

Uh, the bathroom might be cold to them,
and so they're taking off their nice,

warm, comfy clothes, and soon enough,
their skin is exposed, and then suddenly

water is hitting their body, right?

That's a lot of changing
sensory information in a

very short amount of time.

And we haven't even talked
about taste and smell yet.

Maybe someone suddenly isn't
interested in a food that

they've eaten for years, right?

Our first thought might
be, well, they won't eat.

Okay, well, first, let's get curious here.

Does that food smell the
same to them that it…

as it always did?

Does it taste the same?

Okay.

Remember when we had COVID, and our
smell and our taste were impacted.

Think about what that did.

If any of you experienced that,
what did that do to your appetite?

Nothing really tasted very good,
and if you couldn't smell, that

really impacted your taste.

So think about that for a minute,
what that might feel like for them

if those changes are happening,
and we know that they do with,

with the progression of dementia.

And what about the texture in their mouth?

Can they even see clearly
what is on their plate?

Um, there might be sev-several
things happening all at once here.

So I just want you to be careful
because, you know, this is where it

really gets easy to take something
like the wheel and accidentally

turn it into just another checklist.

That's not what I want
you to do here at all.

If someone doesn't wanna eat,
I'm not saying, "Oh, well,

it's definitely sensory."

Or if someone doesn't wanna shower, I'm
not saying, "Oh, it's definitely sensory."

And if somebody pulls away when
you touch them, I'm definitely not

saying that we automatically know
why, but we are asking a question.

Could sensory function be a part
of what is happening right here

and right now for this person?

That's it.

Sensory isn't always gonna be
answered, but it is one of the

questions And I think this is one of
the biggest shifts that I want care

partners to take from this framework.

You don't have to have
the answer immediately.

You don't have to know exactly why
something happened immediately, and you

definitely do not need to memorize a
list of forty-seven different dementia

tips and somehow pull out the right
one in the middle of a hard moment.

That's not how this works.

I want you to become an investigator.

Something happened, okay.

Which spoke might be bent?

Today, we're looking at sensory.

What did they see?

What did they hear?

What did they feel?

What was happening
around them at the time?

What changed?

And then we experiment.

Maybe we change the lighting a little bit.

Maybe we increase contrast
of color and texture.

Maybe we decrease the noise.

Maybe we slow the experience down a little
bit for them, and then we just sit back

and we watch, and we ask, "Did it help?"

And if it did, great,
we learned something.

And if it didn't, that's
information for us, too.

But maybe the sensory wasn't the
primary spoke involved, and that's okay,

and so we're gonna keep on looking.

There's another side of this sensory
spoke that I don't want us to miss, and

so far we've talked a lot about sensory
information that might be confusing or

overwhelming to somebody, like too much
noise, for example, not enough visual

contrast, um, touch that someone wasn't
expecting, water hitting the skin.

But there's another question
that I want you to ask, too.

What if there isn't enough
meaningful sensory input here?

Sometimes when we see someone doing
something less Engaging less, initiating

less, seeming more disconnected
from what's happening around them.

It's easy to assume, well,
that's the dementia progressing.

And sometimes the disease
progression absolutely may

be part of what we're seeing.

But I don't want us to stop
asking questions, okay?

Look at their day.

What are they actually
experiencing throughout their day?

Are they sitting in the same
chair for hours at a time?

Are most things being done for them?

Is the television on but nobody's
really interacting with them?

When was the last time that they
went outside and felt the sun

or a breeze across their skin?

When did they last smell something
cooking in the kitchen that they

really, really used to enjoy?

Um, you know, when is the last
time they touched something

interesting or different?

When have they listened
to music that they love?

When is the last time they moved their
body other than to just get up and

walk to their bed or the bathroom?

When is the last time that they held
something familiar in their hands?

Because sensory input isn't only
about something that the brain has to

process, it's also something that the
brain actually really, really needs.

And sometimes the answer isn't
to take more stimulation away.

Sometimes it's to provide the
right sensory experience for them.

Something meaningful, something that
is familiar to them, something that

gives the person a reason to look, a
reason to reach and move and respond

or even connect with something.

And that's another reason
why the will matters.

We're not just asking
what's wrong all the time.

We're asking, what does this
person need in order to function

as well as they can right now?

And as dementia progresses, that
question becomes even more important

There's another reason I want
to start with the sensory spoke.

As dementia progresses, a person
may have more difficulty relying on

some of the cognitive skills that
they've used throughout their life.

Their language will become harder.

Following a conversation becomes harder.

Reasoning through what you're
asking may become harder.

Memory, sequencing, problem-solving,
all these things will change, and

that means that the sensory experience
becomes even more important here.

Because even when someone can no
longer follow all of your words,

they can still experience you.

They can hear the tone of your voice.

They can feel the way
that you touch their hand.

They can experience warmth, music, a
familiar smell, the feeling of sunshine

on their face, the comfort of a soft,
warm blanket, the taste of something

that they really, really enjoy.

And as we get later and later into
the disease process, these sensory

experiences can become some of our
most important ways of communicating

and connecting with a person.

Maybe the person that you care about can
no longer tell you, "That feels good."

Maybe they can't tell
you, "I know you're here."

Maybe they can't say your name.

But that doesn't mean that there
isn't communication happening there.

Watch their body when
you present these things.

Do their shoulders relax when
you rub lotion on their hands?

Does their face soften when
they hear familiar music?

They might even smile and start to hum.

Do they turn toward the
sound of your voice?

Do they settle when you sit
beside them and hold their hand?

That's communication too.

And I think that this is such an
important thing for families to

understand because dementia takes away
so many of the ways that we've always

been used to connecting with somebody
because conversation changes, and shared

activities change, and roles certainly
change, but connection is still possible.

Sometimes we just have to learn a
different language, and sometimes

that language is sensory.

Now going back to the bedroom
for a second, imagine if I had

simply documented, "Resident
demonstrates recurrent falls.

Recommend strengthening
and balance training."

I could have treated him.

He probably would have participated.

He was a really sweet gentleman.

Maybe he would even have gotten stronger.

He probably would have.

Um, he still might have sat down two
feet before he reached his bed though

because his legs were not the problem.

His sensory spoke was bent.

That is why understanding function
matters so much, especially

when it comes to dementia care.

When we only react to what we see on
the outside, we can spend a lot of

energy trying to solve the wrong problem
But when we understand what the brain

is doing underneath it, we can start
asking better questions, and better

questions give us better options.

So this week, I want you to notice.

Just take notice.

You don't have to change
everything in the house.

You don't need to analyze every
interaction, but just pick one specific

moment that doesn't make sense to you.

And then ask yourself, "What is their
brain actually taking in right now?

What are they seeing?

What are they hearing?

What are they feeling?"

And maybe there's one more question now.

Are they getting enough of the
right kind of sensory input?

Don't worry about having
to have the perfect answer.

Just take notice, get curious, try
something, and watch what happens.

Because once you start looking through
that sensory spoke, you may begin seeing

things that you couldn't see before,
and that's exactly what the wheel of

function is designed to help us to do.

In the next episode, we'll look at another
spoke and keep building this picture

together, 'cause the more we understand
what is happening underneath the behavior,

the less random dementia begins to
feel, and when it feels less random, we

have more options for how to respond.

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
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Until next time, remember,
there's always a better way