Subscribe
Share
Share
Embed
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.
you may have been told only
that the person has dementia.
The diagnosis may have changed over
time, or they were given an incorrect
diagnosis in the first place, or you
may suspect dementia is present while
you're still trying to get someone
to take your concerns seriously.
If that's where you are, I don't want
you to hear this and think, "Well,
I guess I can't do this because we
don't have the right diagnosis."
You can.
You work with the information you
have, and you keep asking questions,
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 something I wish my
family had understood much earlier?
All four of my grandparents lived
with dementia, but it didn't
look the same in any of them.
The changes were different, the pace was
different, and what they needed from the
people around them was different too.
Not all of them were given
a specific diagnosis.
In fact, none of them were given
a specific diagnosis beyond
dementia, which is something a lot
of families experience even today.
And back then, we didn't really
have a map for any of it.
We knew that things were changing, but
we didn't understand why one person could
still do something while another person
couldn't, or why something worked one
day might completely fall apart the next.
And honestly, most of the time
we were just trying to keep up.
We were seeing the signals, we just
didn't know how to read them yet.
And that's why the first part
of the Signal Guide Navigation
System is know the waters.
Before we decide what a signal means
or what we should even do about
it, we really need some context.
We need to know the diagnosis
to the best of our ability.
We need to know the person.
We need to notice what's
happening in the moment, and
those three pieces work together.
We're not always going to have
all of them at the same time, but
the more we understand, the less
likely we are to react to one small
piece of a much, much bigger story.
Let's start with a diagnosis because
the word dementia is often used as
if it tells us everything we need
to know, and it really doesn't.
Dementia is a very, very broad term,
and it tells us that there are changes
going on in the brain that are affecting
thinking and everyday function, but it
really doesn't tell us which parts of
the brain are changing, what abilities
may be affected first or even what
the path might look like over time.
Alzheimer's disease doesn't usually
look exactly like Lewy body dementia.
Frontotemporal dementia can begin very
differently from vascular dementia.
In fact, it almost always does.
And plenty of people are living
with more than one disease
process going on simultaneously.
So yes, the specific
diagnosis can really matter.
It gives us a better idea of what we
might be looking at, and it helps explain
the changes that might otherwise feel
as if they're coming out of nowhere.
But I also know that many families
never get that kind of clarity.
I know what that feels like.
And you may have been told only
that the person has dementia.
The diagnosis may have changed over
time, or they were given a incorrect
diagnosis in the first place, or you
may suspect dementia is present while
you're still trying to get someone
to take your concerns seriously If
that's where you are, I don't want
you to hear this and think, "Well,
I guess I can't do this because we
don't have the right diagnosis."
You can You work with the information
you have, and you keep asking questions.
Because even when you do have
a specific diagnosis, it only
gives you part of that picture.
It doesn't give you the whole person.
It can't tell you whether someone
has always hated mornings, or whether
they need quiet before they're ready
to talk, or whether accepting help
has always been difficult for them.
It can't tell you what makes them
laugh, what work they were proud of,
what role they still feel responsible
for, or what makes them feel safe.
And that brings us to the second part of
knowing the waters, knowing the person.
Two people can have the same exact
diagnosis and respond completely
differently to the same approach.
We've talked about this
in previous episodes.
One may love a room full of
people, the other may have
avoided crowds their entire life.
One may welcome help getting dressed.
The other may have always been very,
very private and independent, and now
someone is walking into the bedroom
and telling them what to put on.
The diagnosis may help explain why
dressing has become harder, but
knowing the person helps us understand
why our approach may or may not fit.
And this is where personal
history, routines, their culture,
relationships, preferences, and
past roles really, really matter.
And no, you don't have to turn
someone's whole life into a scrapbook
before you can support them well.
Sometimes one small little detail
can completely change how you
understand what's happening to them.
And we're gonna spend a full episode on
this because knowing the person is much
more than knowing their favorite food
or putting family's photos on the wall.
It's about identity, it's about
dignity, and the things that may
still feel deeply important even when
the person can't explain to you why.
And then there's the third part,
and that's noticing the moment.
Because even if two people share the same
diagnosis, and even if you know someone
better than anyone else does, today can
still be very different from yesterday.
Maybe the person didn't
sleep well last night.
Maybe there's more noise
in the room right now.
Maybe someone new is helping them.
Maybe the routine changed and the
task is happening at a different
time, or three people are giving
directions all at the same time.
Sometimes we know the person so well
that we jump right into an explanation.
"She's always been stubborn."
"He does this every time
we have an appointment."
"That's just how she is."
And maybe there's some truth to that
history, But if the response is new
or stronger or it's happening in
a different situation, we really
need to look a little bit deeper
Knowing the person gives us context.
It should not stop us from noticing
what is different right now.
So when I say know the waters,
I'm really talking about these
three things coming together.
What do I know about the diagnosis?
What do I know about the person?
And what is happening
in th-this very moment?
Let's put those three questions around
something that you may have heard before.
"I need to go home."
Your first instinct might be to answer,
"You are home," or, "You live here now."
Or maybe it would be, " We can't go home
because the house was sold years ago."
And all of those things may be factually
true, but before we start trying to
convince the person, wh-what happens
if we look at the waters first?
Knowing the diagnosis may help us
understand why the person is asking.
Maybe changes in memory mean that they
don't remember moving into this home.
Maybe they recognize the furniture,
but they can't put all the pieces
together well enough to feel
certain about where they are.
Maybe the place feels unfamiliar to
them because their brain is pulling
from an earlier time in their life.
But the diagnosis still doesn't tell
us what home means to this person.
That is where knowing the person comes in.
When they say home, are they
picturing the house that they were
raised in as a child or the house
that they raised their children in?
Or are they looking for their parents?
Do they always leave work at the
same time to pick somebody up?
Is home less about a physical
building and more about wanting to
feel safe or settled or surrounded
by people that they recognize?
And you may not know, but those questions
lead us somewhere very different than
simply repeating, "You're already home."
And then we notice the moment.
Did this start when the sun started
to go down and the room became darker?
Did everyone else leave after a visit?
Is the television loud?
Is the person tired?
Did a staff change just happen?
Are they sitting in a room that
suddenly feels very unfamiliar
because something was moved?
The same person may ask to go home for
a completely different reason tomorrow.
And this is why there isn't one perfect
response to, "I need to go home."
Sometimes acknowledging
the feeling may help.
Sometimes looking at photographs,
offering a familiar snack, moving to a
quieter room, or just giving the person
something purposeful to do may help.
Sometimes nothing you
try will work right away.
And the point of knowing the
waters isn't just to guarantee that
you'll say the exact right thing.
It's to give you a better chance of
responding to what the person may
actually need instead of getting
stuck arguing with the words.
And no, you're not gonna have the
complete answers every single time.
Sometimes you won't know the diagnosis.
You probably don't.
And sometimes you're a new care partner
or a staff member and you don't know
much about the person's history yet.
And sometimes the moment is moving so
quickly that you're just doing your
best to do whatever you can with the
information that you have, and you're
just trying to keep the person safe.
This isn't a test that you have to
pass before you can help somebody.
It's simply a reminder to use what you
know and notice what you don't know and
stay open to learning more and be curious.
Now, we're not gonna cram
all of that into one episode.
Over the next several weeks,
we're gonna take it in order.
We'll start with the most common dementia
diagnosis, which is Alzheimer's disease,
and then we'll talk about Lewy body
dementia, frontotemporal dementia,
vascular dementia, and mixed dementia.
And this is not so you can listen
to a podcast and diagnose somebody.
I promise you, it's not gonna be that.
And it's definitely not so that we can
put people into these neat little boxes
because they won't fit, I promise.
It's simply because understanding
the condition gives us
a better place to start.
We'll also talk about the stages, and
those can give us a broad sense of
how much support somebody may need.
But they're not a schedule, and
people don't move through them
perfectly in neat lines either.
That will also give us a place to briefly
introduce a concept called retrogenesis,
which is the idea that some abilities may
be lost in roughly re-the reverse order
in which they were developed, and it can
be a really helpful way to understand
function, but it's really a guide and
not a rule, and it never means that
we should treat an adult like a child.
We'll have some deeper conversations
about that in another episode.
Then we're gonna talk about what it really
means to know the person, and that's
where I'll tell you the fuller story of my
grandmother, Maddie, and the little store
she created in her room at memory care.
After that, we'll look at the moment
itself because yesterday's explanation
may not fit what's happening today, and
only then will we move into the next part
of the navigation system, drop anchor.
The order matters.
Before we pause and decide how to
respond, we need to understand what
we're navigating as well as we can first.
Know the diagnosis, know the person,
notice the moment, and that's
how we begin to know the waters.
Next week, we're starting with the
diagnosis most people associate with
dementia, and that is Alzheimer's disease.
We're going to talk about why it changes
far more than memory, what that can
look like in everyday life, and why
two people with Alzheimer's can still
have very, very different experiences.
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