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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.
FTD can affect the ability to recognize
and respond to other people's feelings.
But before anyone explains that to
you, you're having to experience
that as their spouse or their child
or maybe their friend, and you're
thinking, "What happened here?
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 at a conference one time where a
mother was sharing her son's experience
with frontotemporal dementia or FTD,
and I wanna start with her story
because it has stayed with me for years.
Her son was in his late thirties,
and he worked in construction.
She said he'd been a little more
short-tempered, and he'd been having some
outbursts, but there were other things
going on in his life, so, at the time,
they thought maybe it was just stress.
And that's a pretty understandable
conclusion to come to.
Someone has a lot going on,
and their patience is shorter.
They're snapping at people.
Most of us have either been the person
or lived with that person at some point.
And then one day at work, he drove a large
piece of equipment through a grocery store
parking lot and took out a line of cars.
Initially they wondered whether he had
a brain tumor, or was he experiencing
some kind of a psychiatric crisis.
But he was later diagnosed with FTD.
And I don't know all the details of his
evaluation, and I don't wanna fill in
pieces of their story that I don't know.
But I do remember thinking about how
young he was and about his mother
trying to understand what was happening.
And before she had a diagnosis to explain
any of it, she had these changes in
her son that seemed like they might
be related to stress, and then this
very serious incident happened and
they were left looking for answers.
And when we hear a story afterward knowing
the diagnosis, it can sound like all
the pieces fit together, but when you're
the family living through it, those
pieces arrive one at a time, and you
don't know which ones are connected yet.
And that's part of why I wanted to spend
an episode with you talking about FTD.
We're still in Know the Waters, the part
of the Signal Guide navigation system
where we're getting to know what different
diagnoses can mean in everyday life.
And FTD can be especially confusing
because the first thing a family notices
may have very little to do with memory.
Now, before anyone starts thinking
about a stressful week that they've
had or someone in their family who's
been irritable lately, a shorter
temper by itself does not mean FTD.
Neither does an outburst
or a poor decision.
Those things can happen
for lots of reasons.
What we're talking about is a pattern
of changes from how someone used to
function, developing over time that
needs a careful medical evaluation.
But if they remember what you had for
dinner last night, and they remember the
appointment they have next Thursday, but
they're making decisions that have you
thinking, "What on earth is going on?"
would dementia even cross your mind?
Or would you think something was happening
at work, or maybe in your relationship, or
that they were going through a really hard
time that they weren't sharing with you?
I think most of us would look
at those explanations first.
FTD affects areas in the front and
the sides of the brain, the frontal
and the temporal, that help us manage
things like judgment and behavior,
emotional responses, and language.
It often starts younger than people
would expect dementia to start.
A diagnosis in someone's thirties is
unusual, but as this mother's story
reminds us, it certainly can happen.
There are different ways
that FTD can show up.
So two families may have
very different experiences.
For one, the concern may be changes
in behavior or personality, and
for another, the first concern
may be trouble communicating.
So I wanna spend a little bit of time
with both because otherwise it's easy
to walk away thinking that everyone with
FTD is gonna look like the person in
the story that I just shared with you.
With a form called behavioral
variant FTD, a family may notice
changes in someone's judgment, their
ability to hold back an impulse, or
how they respond to other people.
And when those changes happen inside a
relationship, they can feel very personal.
So let's say your partner has always been
very careful with money, and you've made
big purchases together, and you've talked
things through, and you've had pretty good
understanding of what you could afford.
But then purchases start showing
up that just don't fit any of that.
And so you ask about them,
and your partner doesn't
seem particularly concerned.
And meanwhile, you're trying to figure
out how you're gonna pay the bills.
Of course, that's going to cause some
conflict in the relationship, and
you're probably gonna remind them what
you had agreed on and, ask why they
didn't talk to you about that first.
And you may be wondering why you're
suddenly the only one worried about this.
Or maybe it's less about money and more
about how they're responding to you.
Like telling them something upsetting,
and you don't get the concern that
you would normally expect from them.
They may say something that
feels really insensitive and
seem unaware of why it hurt.
FTD can affect the ability to recognize
and respond to other people's feelings.
But before anyone explains
that to you, you're having
that experience in your house,
They may say something that feels
really insensitive and seem completely
unaware of why you were hurt by it.
FTD can affect the ability to recognize
and respond to other people's feelings.
But before anyone explains that to
you, you're having to experience
that as their spouse or their child
or maybe their friend, and you're
thinking, "What happened here?
Why are you treating me this way?
This doesn't make any sense."
And that's a lot to work through.
Even after you understand that brain
changes are involved here, you still
have feelings about what happened.
And, knowing why something happened
doesn't automatically take away the
hurt, especially if you've been trying to
make sense of it for a really long time.
Other families notice that the person
seems to have lost their get up and go.
Someone who used to be busy with work
and projects or family activities may
now just sit for long stretches unless
somebody helps them to get started.
From the outside, it can look
like they're leaving everything to
everybody else, maybe getting lazy.
But getting starting is an ability too,
and that ability can change with FTD.
You can see how easily all of
this could become a conversation
about effort or attitude, right?
Like, why won't you help?
Why don't you care?
We've already talked about this.
You know, those are understandable
questions when you've been trying
to get through daily life and
you don't know what's happening
to the person in front of you.
It gets even harder when the person
doesn't recognize the changes
that you're seeing You may be
increasingly worried while they're
telling you that everything's fine.
They might even be annoyed with
you for pointing things out.
You try to explain it more clearly.
Maybe you bring up three
examples, hoping that one of
them will help them understand.
But if their awareness is
affected, more explanation may
leave both of you frustrated.
And this is where looking at
function can really help us
to ask a different question.
Through the wheel of function framework,
we've talked about looking at the
abilities involved in an everyday task.
A purchase, for example, involves
more than just remembering how
to use a shopping app, right?
There's pausing, there's thinking about
the cost of the item, considering what
else that money is needed for, and
weighing what could happen afterward.
Someone may still know exactly how
to place that order while having
difficulty with the other parts involved.
And that doesn't solve the
financial problem, but it does give
us somewhere more useful to go.
If repeated conversations aren't
helping, it may be time to work out
appropriate safeguards with professional
guidance, while still respecting the
person's rights and involving them as
much as possible in those decisions.
The same goes for driving
or operating equipment.
When there's a safety concern, the
care team needs to know the specifics
so they can help come up with a plan.
Understanding what might be behind
a behavior is useful, and we have to
address what could happen because of it
Now, the family whose first concern
is language may be having a very
different set of conversations.
You may hear the term primary progressive
aphasia or PPA, which describes language
becoming more difficult over time.
Some forms are associated with
FTD, while others are more often
associated with Alzheimer's disease.
Maybe the person is having trouble
putting a sentence together, or familiar
words are becoming harder to understand.
You're both trying to have a conversation,
but it's taking more work than it used to.
And because you wanna help, you start
guessing what they mean or offering words
or finishing their sentences for them.
And sometimes that helps.
But other times you can see them
getting more and more frustrated,
and now you're frustrated too
because you don't know what to do to
make it easier for the two of you.
And there's not one communication
trick that's gonna work for everyone,
but giving the person more time
is a reasonable place to start.
Let one thought that they have land before
adding another question, for example.
See whether pointing to something
or writing down a choice helps them.
A speech-language pathologist can help you
figure out what works with the particular
changes that your person is experiencing.
And while you're figuring that out, keep
making room for their participation.
It's easy for a conversation
to move on without someone
when speaking takes longer.
They still need the chance to tell
you what they want or disagree
with you, laugh with you, or
just be part of what's going on.
Between the behavior changes and the
language changes, you can probably
understand why getting a diagnosis
isn't always straightforward.
Some symptoms overlap with mental
health conditions, and those conditions
deserve a careful evaluation too.
Sometimes more than one thing
is happening, and it takes
time and the right expertise to
sort through the whole picture.
If you're listening because something has
felt different in your family, you don't
have to decide which diagnosis explains
it before you make an appointment.
Start with what you've noticed.
This is unusual for him,
and here's an example.
Or she used to manage this easily,
and now over the last several months,
it's become much harder for her.
That kind of information can help a
clinician understand what's changed.
It may be something the person can't
explain themselves or something that
doesn't show up during a short office
visit, so that information is important.
A clinician may use that history
along with testing and examination
and brain imaging, and sometimes a
referral to someone with experience
in FTD is helpful You don't need
a binder full of perfect records.
If something happens and you think,
"I want to remember to mention
this," put a note in your phone.
You know, roughly when it
happened, what did you notice?
Why was it different?
I'll include my free doctor
visit preparation guide in the
show notes if having something
to organize those thoughts would
make it a little easier for you.
And I do want to make
one distinction here.
FTD develops over time.
If someone suddenly becomes confused
or has trouble speaking or has an
abrupt change in alertness or behavior,
that needs prompt medical attention.
So don't wait for a routine appointment
or assume that it's part of a dementia.
I keep thinking about that mother
and how she described the changes
before her son's diagnosis.
Stress seemed like a reasonable
explanation for what was happening
and what she was seeing, and she
wasn't standing where she stood
at the conference yet with the
name for what had been happening.
She was in the middle of it.
If you're looking back at a time
before someone's diagnosis, you
may recognize that feeling too.
Maybe you thought it was work stress.
Maybe you thought they were depressed.
Maybe there were arguments that
you now understand differently, and
you wish that you could go back and
handle them with what you know today.
I think it's worth being
gentle with yourself here.
You were responding to what you
understood at the time, probably while
keeping up with work and a family
and everything else that doesn't
stop just because something is wrong.
You can learn from that period
without expecting yourself to
have recognized something that
can be difficult for even the most
experienced of clinicians to diagnose.
And if you're still looking for answers,
it's okay to say, "I'm still concerned.
Does what we're seeing fit the explanation
we have, or should we look further?
Do you need a second opinion?"
You don't need medical
language to those questions.
For families already living with
FTD, I'll include the Association
for Frontotemporal Degeneration
or the AFTD in the show notes too.
Finding support that understands FTD
can matter, especially when you're
dealing with work, parenting, finances,
and relationship changes all at once.
It helps to have somewhere where you
can bring the actual situation that
you're living with, including the
parts that are hard to say out loud.
Maybe you need help planning for safety.
Maybe you need someone to explain
what's happening to your children.
Or maybe you need a place where you can
admit that you're angry and exhausted
without having to first explain
how much you care about the person.
All of those things you deserve help with.
I keep thinking about that mother
and how much she helped us understand
by telling her son's story.
Before there was a diagnosis, there
was a family trying to make sense of
the changes that they hadn't expected.
And I know some of you are listening
here in that place right now.
And if that's you, you don't have to
figure out this diagnosis yourself.
Just bring what you're noticing.
Ask your questions.
And if you're already caring for
someone with FTD, I hope today
put words to something you've been
experiencing, especially if it's
been hard to explain to other people.
I'll have the FTD resources and
my free doctor visit preparation
guide in the show notes.
You might find something there that
helps with your next conversation.
Next week, we're going to
talk about vascular dementia.
You may have heard that term after
someone has had a stroke, but the
connection isn't always that obvious.
We'll talk about how changes in blood
flow to the brain can affect everyday
life, why one person's experience can
look quite different from another's,
and what that can mean for the
support that they're gonna need.
Thank you for spending
part of your day with me.
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
I'll see you next time