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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'm someone that learns by
seeing how things fit together.
I was never the type of person who
could just memorize lists, uh, numbers.
To this day, I can't cross the
room to dial a number that I just
looked up, so that's just my brain.
I really needed to connect those things.
You show me how those different things
connect in the brain, and I'm gonna
remember them for the rest of my life,
Can I tell you a story?
About 10 years before I ever
started A Better Way, I took a
course that, looking back, really
changed the direction of my career.
I'd taken several courses over the
years, and honestly, I couldn't even
tell you how many at this point.
But every once in a while, you just,
you take one that really sticks with
you and changes everything about
what you think, and this one in
particular was one of those courses.
It was out in Nashville.
I'd never traveled that much
for that long by myself.
My husband and my three little kids
were back home, and I was gone for
the week just to focus on this course.
And it was a pathway to certification
to become an instructor myself, and
so I was really excited about it.
And the instructor was wonderful,
and I'm so glad she was wonderful
'cause I had to sit there for
three days, uh, and listen to her.
But she made it great.
What I really remember about her is, and
maybe it wasn't just her, but maybe the
structure of this course, was she didn't
just start talking about memory loss.
Actually, I don't think that we
even talked about memory loss
until a couple hours or so in.
But she really started
talking about function.
She herself was a therapist.
She was an OT, and she explained what
was happening in the brain, uh, with
dementia and, all the systems, right?
Our sensory system, how is that impacted?
The way we feel, the way we see,
the way we hear, the way we smell
and taste, all those things.
And also, you know, the, the
different changes that happen with our
emotions, so, you know, our feelings
of joy and sadness or frustration,
anger, agitation, all the things.
And then our physical abilities, which
honestly I don't know why, but I hadn't
thought about that very much because
if it's a brain disease, the brain
does everything, including helping
us to get up out of a chair and walk.
So she explained just all the different
changes in physical abilities and
eventually made it to all the different
things that happen with our thinking,
so our attention and our sequencing, you
know, through different steps of a task.
And Problem solving and
communication, all those things.
And I remember sitting there and
thinking, "Wow, this makes so much sense."
Like, "Huh, this makes sense."
Like, a brain disease, what do you know?
It's causing all these things
that the brain controls, right?
And I also remember after the course
was done, and, you know, we left, and
I was flying home thinking, "Okay.
But I get it.
I get all these changes,
but why can't I picture it?"
Does that make sense to anybody else?
I couldn't picture it.
I, I totally understood everything that
she was teaching, and I believed it truly.
I just couldn't quite
organize it in my own mind.
Um, and I guess that's
always been the case for me.
I'm someone that learns by
seeing how things fit together.
I was never the type of person who
could just memorize lists, uh, numbers.
To this day, I can't cross the
room to dial a number that I just
looked up, so that's just my brain.
I really needed to connect those things.
You show me how those different
things connect in the brain,
and I'm gonna remember them
for the rest of my life, okay?
So that's just how my brain works.
I don't know if you guys can relate.
But I carried those ideas with me
anyway, and I kept treating patients,
and I took more and more courses,
and I kept reading research articles.
And every once in a while, I would find
myself thinking back at that course,
and I would think, "Oh, that's what,
that's what she meant about that one."
Or, you know, it wasn't necessarily
a big light bulb moment for me.
It was more like kinda little twinkling
lights coming on one after another
at, you know, over time, I should say.
Um, and at that point in my career,
most of my time was actually
spent just treating patients.
I really didn't have a whole lot of-
contact or influence with the families,
I guess, because either the patient was
in the hospital if I was in the hospital
setting, or when I was in the long-term
care or assisted living setting, families
typically weren't there all the time.
But they certainly were a part of
the picture, um, on the periphery,
and I'd answer their questions and
teach them what I could, about what
they needed to know before discharge
if those people were going home or,
what they could do when they came to
visit, those kind of things, and then
I'd just move on to the next patient.
So it really wasn't until I started
leading workshops for families that I
started to realize something, and what
that was was there's still a disconnect.
Um, not because families weren't
trying to learn and not because there
wasn't good information available.
There's lots of information.
The problem was that it lived in pieces,
kind of scattered and strewn everywhere.
And, you know, one course explained
one thing, and a research paper
explained another thing, and a mentor,
you know, and all the things, and it
was the same thing for the families.
They'd research Google, and they'd read
this, and another family member told
them this, and maybe a doctor said this.
But, you know, all that
information wasn't the problem.
The challenge was figuring out how
to connect it all in a way that
people could really remember, and not
just remember, but actually use it.
And that's when I realized that I
wasn't looking for more information.
I was looking for a
better way to organize it.
So I started to experiment a little bit.
How can I present this so it makes sense?
And one day I was standing in front
of a group, and I was trying to
explain function, and I remembered
back that course in Nashville, a
graphic that was in the workbook.
And I stood in front of the group,
and I say, "Okay, let's think about a
bicycle wheel for a moment, and think
about it like, you know, the outside of
the wheel is function, and the person
is in the middle, and there are all
these spokes that are supposed to keep
the tire whole and rolling well, right?
And so if, if the spokes, uh, are
nice and straight and where they're
supposed to be, and the wheel has
really nice stable structure, that
wheel's gonna roll really well, right?
But if one of those spokes starts
to bend or break, the whole
wheel starts to wobble, right?"
And people were nodding, and they were
like, "Oh, that makes sense, right?"
And I could almost see light bulbs
going on around the room, right?
One after another.
And I remember thinking, "Okay, you
know, maybe this is gonna work."
But then I'd keep teaching,
and I would start talking about
things like person-centered care.
You probably have heard that term, but
truly the person is the center of the
care and knowing about that person,
what makes them tick and who they are.
And, you know, all of a sudden, I
would catch myself in the middle
of that thinking like, "Well, how
does that fit with a bike tire?"
Right?
And then there would be another
concept that was, you know, completely
changed the way I understood dementia
as well, really important, and I'd
realize, "Well, that doesn't really
fit next to that bicycle wheel either.
Um, how am I gonna make that make sense?"
And it wasn't that any of
those things were wrong.
They all were great ideas.
They just didn't fit together.
They were some of the most
important and applicable things
that I've learned over my career.
I'd pull one out when I
need it, I put it back.
I grab another one, I put it back.
And all the while, I just was trying
to figure out how am I gonna connect
this, one, so that it makes sense in
my brain, so that I know it enough so
that I can teach it to other people
so that they're gonna understand.
Just 'cause that's, that's
me, that's how my brain works.
And if my brain works like that,
somebody else has got to also.
Because that's just how my brain works.
You know, I've never been good,
like I said, at memorizing
random pieces of information.
I need to really understand
how they fit together.
What is, what is this concept, right?
I need to know why one thing leads
to another, leads to another, and
once I can see it and visualize it, I
don't have to memorize nearly as much.
It's more automatic for me, and that
picture starts to really make sense.
And honestly, I started wondering
if families were probably
struggling with the same thing.
Maybe out there you're nodding.
You're struggling with the same thing.
Maybe it wasn't that they
needed more information.
Maybe they just needed a way to
connect all of that information
that they already had.
Looking back now, it's funny how
life connects things that you never
realized were connected, right?
A few years before I started my
business, I was talking to my
therapist, and she asked me a question,
and I've never forgotten this.
She said, "Where do you
feel the most at peace?"
And I didn't have to think
about that very long.
I immediately said the ocean.
The sound of the waves, the lighthouse,
the boat way off in the distance.
And that picture came to me almost
instantly, and I was suddenly at Marshall
Point, and I didn't know why at the
time, but it's just where my mind went.
And so a few years later, when I finally
decided to start my own business,
and actually it was my therapist who
kind of planted that seed for me,
choosing the lighthouse as my logo
wasn't some big branding decision.
It actually just kind of felt right.
To me, a lighthouse represents
a lot of things like hope.
It represented guidance and
finding your way when life suddenly
feels unfamiliar and scary.
And so honestly, that's all
I really thought it meant.
And then one day, while teaching
another workshop for another group of
families and trying to connect all of
those different ideas that I've been
carrying around all those years, I
caught myself thinking again, "Huh.
If there's a lighthouse, what
exactly are, are we navigating?"
And once I started to ask that questionâ¦
I ask a lot of questions.
I couldn't stop thinking about it.
I kept workshopping it, and I would
kinda sketch ideas and move things around
and ask myself, "Okay, does this fit?"
And sometimes it did, and sometimes it
didn't, and so I would just scrap it
and move on, um, and then rethink it.
And it didn't happen overnight.
It took a lot of inner conversations
and a lot of teaching and a lot
of learning and a lot of asking
even better questions than that.
But little by little, everything
kinda started to fit together finally.
And for the first time, every
piece had its own place.
The course that changed how I
taught about function was one thing.
The questions families kept asking, the
person-centered care, the stories, the
research, my grandparents, everything
that I'd been carrying around for years
suddenly belonged in the same picture, and
that puzzle started to make sense to me.
And that connected picture eventually
became what I now call The Wheel of
Function framework, and it's become the
foundation of everything that I now teach.
And over the next few episodes,
I'm gonna show you how it works.
Because once you know what you're
looking for, you're never going to
look at dementia the same way again