Understanding Frontotemporal Dementia-Interview with Sarah Lopata

Welcome To Patty’s Place

SPEAKER_00
0:17

Welcome
to
Patty's
Place,
a
place
where
we're
gonna
talk
about
grief,
dementia,
and
caregiving.
I
started
this
podcast
in
honor
of
my
mom,
Pat,
who
passed
away
from
dementia
almost
three
years
ago
now.
I
am
your
host,
Lisa.
I
want
this
to
be
a
place
where
you
know
you're
not
alone
and
we
can
have
these
difficult
conversations
and
hope
we
can
just
guide
ourselves
through
this
challenging
times
for
it.
So
grab
yourself
a
cup
of
tea,
a
cup
of
coffee,
or
if
you're
having
a
really
bad
day,
a
glass
of
wine,
and
we
will

Meet The FTD Expert Guest

SPEAKER_00
0:44

get
started.
I'm
very
excited
about
our
guests
today.
So,
because
you
know,
as
I
talked
about
before,
there's
different
types
of
dementia.
So
we're
gonna
talk
about
a
particular
type
of
dementia
today.
So
my
guest
is
Sarah
Lapata.
She
is
with
the
Association
for
Front
to
Frontotemporal
Degeneration.
Hopefully
I
said
that
correctly.
Okay,
welcome,
Sarah,
to
Patty's
place.
Thank
you.
So
thank
you
so
much.
So
what
is
FTD,
as
you
call
it?

What Frontotemporal Degeneration Means

SPEAKER_01
1:17

Sure.
Um,
thanks
again
for
having
me
here
today.
Um,
frontotemporal
degeneration
refers
to
a
group
of
brain
disorders
caused
by
degeneration
in
the
and
damage
and
death
of
the
frontal
and
temporal
lobes.
So
you
may
have
heard
of
frontotemporal
dementia,
frontotemporal
lobar
degeneration,
and
PICS
disease.
Um,
it
presents
with
behavior
or
communication
or
movement
symptoms
and
is
frequently
diagnosed
between
the
ages
of
45
and
60,
which
makes
it
a
leading
cause
of
young
onset
dementia.

SPEAKER_00
1:59

Wow.
So
how
is
it
different
from
other
dementias?

How FTD Differs From Alzheimer’s

SPEAKER_01
2:05

That's
a
great
question.
So
um
when
people
think
about
dementia,
I
think
a
lot
of
people
automatically
go
to
memory,
right?
They
think
about
Alzheimer's.
That's
kind
of
what
people
are
familiar
with.
Um,
but
unlike
Alzheimer's,
memory
often
remains
intact
in
early
stages
of
FTD.
Yeah.
So
you
might
see
um
uncharacteristic
behavior
or
communication
or
movement
symptoms.
That's
the
those
are
the
symptoms
that
um
people
see
with
FTD.

SPEAKER_00
2:40

So
just
like
it's
they're
like
not
their
self,
like
in
the
way
they
react
to
different
things
or
their
feelings
and
stuff
like
that.

SPEAKER_01
2:47

Uh
yeah,
exactly.
Okay.
Yeah.
And
sometimes
one
of
the
things
that
really
stands
out
for
a
lot
of
people
is
they
notice
that
their
loved
one
um
seems
like
they
don't
have
empathy
or
they
seem
apathetic.
Uh,
they
don't
want
to
do
anything
that
they
used
to
want
to
do.
Um,
so
it
can
feel
like
very
confusing.
Um
and
and
that's
and
that's
really
common
in
FTD.

SPEAKER_00
3:12

Okay.

Why Diagnosis Takes So Long

SPEAKER_00
3:14

Why
does
it
take
so
long
to
get
a
diagnosis?
So
I
was
doing
research
on
the
website,
and
I
noticed
that
was
one
of
the
first
things
that
struck
me.
Why
does
it
take
so
long?
Yeah,
that's,
I
mean,
it
really
does
take
a
while.

SPEAKER_01
3:26

Um,
the
average
is
3.6
years
to
get
an
accurate
diagnosis.
Um,
for
some
people,
they
can
get
it
pretty
quickly,
but
for
most
people,
it
is
a
very
long
journey.
Um,
because
I
think
there's
a
lot
of
things
that
goes
into
making
the
diagnosis
challenging.
Um,
one
thing
is
that
FTD
is
what
we
say
um
is
heterogeneous.
So
that
means
like
there's
a
significant
diversity
in
how
symptoms
present.
If
you
have,
say,
like
um,
if
you
have
a
beh
the
behavioral
variant
of
FTD,
it
doesn't
necessarily
mean
that
all
of
your
behaviors
are
going
to
be
the
same
as
someone
else
who
has
the
same
variant,
right?
Okay.
So
it's
not
always
really
easy
to
like
check
the
boxes.
Um
and
then,
you
know,
also
because
symptoms
can
begin,
you
know,
so
much
earlier,
you
know,
in
their
40s
or
even
as
young
as
in
their
20s,
you
don't
automatically
think
it's
dementia
and
you
try
to
rule
other
things
out
first.
So
you
can
go
a
long
time
without
a
proper
diagnosis,
and
that
can
impact
your
relationships,
your
career,
everything.
Um,
and
then
even
when
you
do
finally
try
to
get
a
diagnosis,
um,
there
can
be
a
lot
of
misdiagnosis.
People
um,
it's
frequently
misdiagnosed
as
Alzheimer's
or
psychiatric
disorder,
like
depression
or
bipolar
disorder.
Um,
with
the
movement,
um,
the
movement
variants,
it
looks,
it
can
look
like
Parkinson's.
So
um,
they
can
miss
the
true
underlying
diagnosis.

Which Doctors And Tools Help

SPEAKER_00
5:06

So,
what
type
of
doctor
should
somebody
go
to?
Should
they
start
with
the
neurologist
or
neuropsychiatrist?
Where
where
should
they
even
start
if
they're
suspecting
that
their
loved
one
just
isn't
quite
themselves?
Yeah,
that's
a
that's
great.

SPEAKER_01
5:20

Um
yeah,
so
if
sometimes
if
you
go
to
your
primary
care
physician,
you
might
get
referred
to
a
mental
health
clinician
or
someone
to
kind
of
be
dealing
with
some
of
the
symptoms
that
look
like
something
else.
Um,
but
we
do
know
that
neurologists,
that's
the
way
to
go.
Okay.
Um,
and
actually
on
AFTD's
website.
So
if
anybody
is
thinking,
is
this
happening
to
my
loved
one
or
is
this
happening
to
me,
right?
If
you're
noticing
weird
like
symptoms
in
yourself,
um,
AFTD
offers
uh
diagnostic
checklists
on
our
website,
and
you
can
go
through
and
see
how
much
of
it
applies
to
you,
and
you
can
take
that
with
you
to
your
doctor.
So
you
might
have
a
neurologist
that
you
can
say,
that's
wonderful.
Um,
if
not,
you
could
go
to
your
primary
care
doctor
and
take
that
with
you.
Um,
we
also
have
a
locator
tool
on
our
website
that
has
FTD
specialized
medical
centers
that
are,
that
are
listed
there
too.
So
you
might
be
able
to
find
one
close
enough
to
you.
Um,
but
we
do
know
people
travel
pretty
far
sometimes
to
find
a
specialist
uh
that
would
help
them.

SPEAKER_00
6:33

And
I
did
notice
those
checklists
on
the
website.
I
thought
they
were
pretty
awesome
because
there's
they're
so
simple
to
you
know
to
print
out
and
check
with
it.

SPEAKER_01
6:41

Yeah,
yeah.
And
it
really
gives
you
the
language
to
use
because
sometimes
um
I
think
you
know,
like
as
a
lay
person,
as
someone
without
medical
training,
you
don't
always
know
what
to
say
to
describe
what
you're
seeing
in
your
loved
one,
um,
to
really
have
it
hit
home
with
your
doctor.
So
this
is
really
helpful.
That
kind
of
like
translates
the
behaviors
or
the
issues
and
the
symptoms
to
make
it
um
work
with
your
doctor
so
they
can
understand

Genetics, Testing, And Counseling

SPEAKER_01
7:08

it.

SPEAKER_00
7:08

And
now,
how
uh
how
do
genetics
play
a
role
in
the
form
of
dementia?
Because
I
know
anybody
that's
had
a
family
member
with
any
type
of
dementia,
you
you
start
to
worry
like,
am
I
gonna
get
it?
You
know,
do
you
think
it
plays
a
role
in
this
particular
one
or
or
are
we
not
sure
yet?

SPEAKER_01
7:26

So
we
know
that
in
in
over
half,
about
60%
of
people
who
are
diagnosed
with
FTD,
there's
no
one
else
in
the
family
with
FTD
or
related
conditions.
So
we
refer
to
this
as
sporadic
or
apparently
sporadic
because
we
don't
know
the
true
underlying,
we
don't
know
all
of
the
genetic
causes.
So
we're
still
learning,
research
is
still
moving
forward.
Um,
but
we
do
know
that
about
more
than
half,
60%
are
are
not
um
associated
with
uh
a
genetic
underlying
cause.
Um
but
in
40%
of
the
cases,
we
know
that
there's
a
family
history
of
dementia
or
a
related
neurological
condition.
Um
we've
we
call
that
familial
FTD.
Okay.
And
within
that,
there
is
a
greater
likelihood
of
being
able
to
find
um
a
genetic
variant
that's
associated.
So
of
you
know,
of
all
of
the
cases
of
FTD,
they
will
find
15
to
20%
of
people
do
have
an
underlying
genetic
cause.
Um,
so
it's
not
a
whole
lot,
but
it's
definitely
um
prevalent.

SPEAKER_00
8:38

Okay.
But
I
mean,
yeah,
I
mean,
you're
always
worried,
like,
and
I
know
that
there,
I
know
for
the
other,
excuse
me,
I
know
there's
the
other
types
of
dementia,
there's
like
a
blood
test
or
something
you
could
take.
And
I
always
think,
do
I
want
to
know?
I
don't
know.
You
know,
it's
kind
of
scary
either
way
with
it.

SPEAKER_01
8:54

But
yeah,
and
you
know,
what
we
know
is
that
because
diagnosis
can
be
challenging,
um,
and
they
are
working,
like
the
res
biomarker
research
is
happening.
So
we
are
really
hopeful
that,
you
know,
we
know
like
with
the
Alzheimer's
biomarker
test,
like
you
know
that
that
can
rule
it
out
for
people,
which
is
it's
helpful
to
know
because
if
you
get
the
proper
diagnosis,
it
can
lead
you
to
the
proper
support,
the
proper,
you
know,
the
right
treatments,
the
right
if
there,
you
know,
as
research
is
is
moving
forward
and
advancing,
it
can
connect
you
to
be
able
to
participate
in
the
right
research.
So
if
that's
what
you
want
to
do.
So
that's
um,
yeah,
it's
such
a
hard
decision
though.
And
um,
you
make
a
really
good
point.
Like,
um
you
don't
know
if
you
want
to
know,
or
there
are
pros
and
there
are
cons.
Um,
so
AFTD
does
recommend
that
everybody
meets
with
a
genetic
counselor
um
who's
diagnosed
with
FTD
because
they
can
help
walk
you
through
that
decision
making.
Um,
just
because
you
meet
with
a
genetic
counselor
doesn't
mean
you're
gonna
get
a
test,
but
it
helps
you
figure
out
if
that's
the
right
choice
for
you.

SPEAKER_00
10:06

And
when
you
you
said
like
movement,
so
like
what
are
out
of
the
ordinary
like
movements?

Movement And Language Warning Signs

SPEAKER_00
10:12

Because
you
know,
we
all
like
kind
of
trip
or
fall
or
you
know,
have
those
types
of
things,
but
when
should
you
like
kind
of
get
concerned
on
the
movement
part?

SPEAKER_01
10:21

So
because
FTD
and
and
because
it's
a
progressive
neurological
disease,
you're
going
to
see
things
progress.
You
will
see,
you
know,
it
might
start
out
like
um
with
some
stiffness,
um,
neck
stiffness,
or
tripping,
not
being
able
to
orient
in
space,
falls,
things
like
that.
But
when
it
when
you're
seeing
it
happen
more
and
more,
is
when
you
really
should
pay
attention.
Um
and
that's
something
when
you
would
want
to
talk
to
a
doctor
or
explore,
you
know,
the
diagnostic
checklists.

SPEAKER_00
10:58

Okay.
And
I
also
noticed
when
I
was
on
the
website,
there's
it,
there's
other
uh
conditions
that
kind
of
go
along
with
this,
with
it.
Like
was
it
aphasia
and
a
few
other
ones?
Is
are
is
that
pretty
common
for
someone
then
to
have
like
two
different
ones?

FTD Subtypes Under One Umbrella

SPEAKER_01
11:14

Yeah,
so
I
think
what
you're
talking
about
is
the
subtypes
of
FTD,
so
different
kinds
of
ways
it
can
present,
right?
Um
so
for
there's
a
behavioral
variant
where
you
see
the
personality
changes
and
apathy
or
judgment.
Um
and
then
with
aphasia,
primary
progressive
aphasia
is
more
um
language
and
communication
symptoms.
Um
so
you
could
be
losing
the
meaning
of
words,
or
um,
you
could
know
the
meaning
of
words
and
know
exactly
what
you
want
to
say,
but
you
just
can't
say
it.
You
can't
find
the
word,
um,
or
it
just
doesn't,
your
sentences
don't
look
the
way
they
used
to.
Um
and
there's
also
primary
progressive
apraxia
of
speech,
which
is
kind
of
similar
to
um
that
has
a
little
bit
of
movement
because
it's
the
part
of
the
brain
that
controls
the
muscle
that
makes
your
mouth
make
the
words.
So
you
can't
make
the
words
anymore,
okay.
Um,
but
you
still
know
what
you
want
to
say.
Um,
and
then
there
are
a
couple
other
the
movement
disorders.
Uh,
we're
looking
at
corticobasal
syndrome,
CBS,
um,
that
affects
movement.
Um,
you
see
um
symptoms
that
resemble
Parkinson's.
So
some
that
again,
that
that's
sometimes
part
of
the
diagnostic
challenge
is
that
people
think
that
it's
Parkinson's,
um,
but
then
um,
but
it's
actually
under
the
FTD
umbrella.
Um,
progressive
supernuclear
palsy
is
another
one
of
the
movement,
um
the
movement
variants.
Um,
you'll
see
stiffness,
um
poor
balance,
and
then
also
you
also
see
like
um
a
progressive
kind
of
like
inability
to
move
your
eyes
or
opening
or
closing
your
eyes.
So
all
of
like
it's
there's
so
many
things
that
could
that
fall
under
it.
So
it
is
a
lot
to
take
in.
Um,
but
if
you're
if
you're
experiencing
that
or
your
loved
one
is
experiencing
that,
it
might
be
uh
progressive
uh
supernuclear
palsy
or
PSP.
Um
and
then
also
FTD
ALS.
So
um
they
FTD
and
ALS
can
occur
in
the
same
person.
Um
sometimes
we'll
most
of
the
time
when
that
happens,
you
do
see
symptoms
of
FTD
first,
um,
and
then
they're
followed
by
the
motor
symptoms
with
ALS
afterwards.
Wow.
That's
a
lot.

SPEAKER_00
13:53

Yeah,
it's
a
lot,
it's
a
it's
a
lot.
It's
a
lot,
it
is
a
lot.
Uh
yeah.
How
common
is
this
particular
this
this
how
common
is
FTD?

SPEAKER_01
14:05

Um,
you
know,
it's
considered
a
rare
form
of
dementia.
Um,
we
know
there
was
a
study
that
is
from
2011,
so
it's
pretty
long
ago.
But
it
suggested
between
50
and
60,000
people
in
the
US
have
it.
Um
that
was
a
long
time
ago.
And
we
also
know
that
with
misdiagnosis
and
underdiagnosis,
that's
probably
not
a
completely
accurate
reflection.
Um,
but
it's
um
we
know
that
with
more
understanding,
more
awareness,
um,
more
education
for
healthcare
professionals,
we're
getting
a
better
understanding
of
how
many
people
do
have
FTD.
But
yeah,
it
is
still
considered
a
rare,
um,
disease.

SPEAKER_00
14:53

Can
because
I
know
somebody
can
have
mixed
dementia
as
well.
Like
maybe
they
start
with,
say,
vascular
dementia
or
Alzheimer's.
Can
they
then
get
symptoms
of
FTD
too
as
it
progresses?

SPEAKER_01
15:07

Yeah,
you
know,
with
um
we
what
we
do
know
with
FTD
and
the
progression
of
FTD
itself
is
that
you
could
start
with
symptoms
that
present
like
the
behavioral
variant
and
it
would
eventually
move
into
other
parts
of
the
brain.
Um,
so
then
you
will
see
other
like
language
or
communication
symptoms
or
movement
symptoms
and
the
same
thing,
like
vice
versa.
Um,
and
you
do
you
can
see
that
very
similarly
in
mixed
dementia.

SPEAKER_00
15:35

Okay.

When A Loved One Lacks Insight

SPEAKER_00
15:36

So
this
is
a
question
probably
not
just
for
FTD,
but
anybody
who
has
a
loved
one
with
dementia.
But
I
love
this
question
on
your
website.
Why
does
my
loved
one
uh
can't
why
can't
they
acknowledge
their
FTD
and
the
impact
on
the
family?
Yeah.

SPEAKER_01
15:55

You
know,
that
one
is
such
that's
so
difficult
for
caregivers.
Um,
and
we're
also
really
learning
that
it's
difficult
for
persons
who
are
diagnosed.
Um
so
the
term
that
we
use
for
this
is
called
anasygnosia.
That
means
a
lack
of
insight
into
their
own
condition.
So,
you
know,
it's
it
can
be
on
a
spectrum,
um,
but
it's
not
denial.
And
it
feels
like
denial
and
it
feels
like
manipulation.
So
it
is
just
so
hard
for
care
partners
and
family
members
to
witness
that
in
their
loved
one
if
it
just
seems
like
you're
saying,
here's
here's
the
medical,
here's
your
record,
and
it
says
you
have
FTD.
Um,
but
their
loved
one
says
that
nothing
is
wrong
with
me.
I
don't
know
what
you're
talking
about.
I
I
don't
do
that.
Um
so
it's
something
that's
really,
really
difficult,
and
it
is
a
it
is
a
common
symptom.
Um,
but
again,
it's
it's
truly
part
of
the
disease.
Someone
with
who's
who's
experiencing
this
really
truly
can't
help
it.
Um
but
we
work,
you
know,
with
care
partners
to
support
them
as
they
face
it
and
adapt
to
it.
Um,
they
deserve
that
support
and
validation.
And
um
it's
also
part
of
the
diagnostic
challenge,
too,
because
if
somebody
doesn't
believe
that
something
is
wrong
with
them,
they
truly
can't
see
that
something's
wrong
with
them.
It
really
makes
it
difficult
for
them
to
agree
to
go
to
a
doctor
and
get
evaluated.
And
so
that's
something
that
AFTD's
helpline
staff
is
really
good
at
working
with
family
members,
care
partners,
um,
to
talk
about
like
what
are
different
strategies
you
can
use
to
approach
this
symptom
because
it
is
it's
really,
really
difficult.
Um
and
one
another
thing
is
really
joining
a
support
group
because
you
can
connect
with
other
people
who
are
going
through
this
too,
and
you
feel
like
so
much
less
alone
in
this
in
this
part
of
it.

SPEAKER_00
18:07

My
mom
had
that
symptom,
even
though
she
wasn't
diagnosed
with
FTD.
She
she
ended
up
uh
they
they
said
she
was
diagnosed
with
mild
to
severe
dementia,
and
actually
on
her
death
certificate,
they
listed
vascular
dementia.
But
it
was
when
I
finally
went
on
the
Alzheimer's
Association
website,
and
I
saw
I
can
never
say
that
word,
but
I
saw
what
it
was,
and
I
was
like,
that's
her.
Like
she's
she's
not
in
denial,
she
just
thinks
everything's
fine.
And
then
my
dad
had
a
hard
time
with
it,
you
know,
to
admit
it.
And
you
could
not
say
the
word
demonstra
around
her,
she
would
get
so
upset,
you
know.
So
we
just
never
did,
you
know,
and
it
it
took
it
does
take
a
while
to
accept
that
that
they're
not
fighting
you.
They
just
really
don't
understand
that
this
is
what's
happening
to
them.

SPEAKER_01
18:58

Yeah,
absolutely.
And
it
is
one
of
those
things
um
that
we
do
really
try
to
support
caregivers
and
um
family
and
friends
and
um
and
persons
who
people
who
are
diagnosed
too,
because
they
they
can
sometimes
see
it.
The
lack
of
insight
doesn't
mean
like
a
complete
lack
of
insight
all
the
time.
Um,
it's
a
spectrum.
So
sometimes
people
can
see,
like
they
do
know
they
have
FTD,
but
they
don't,
they
may
not
be
able
to
see
everything
that
is
happening
from
the
care
partner's
perspective.
So
it
can,
it's
just
devastating
for
them
too.
Um,
I
think
the
more
we
get
to
understand
what
it's
like
to
live
with
a
diagnosis,
we
are
developing
much
more
compassionate
responses
to
each
other
um
and
just
being
able
to
be
there
for
each
other
because
it
is
it's
really,
really
hard
for
families
to
to
address
this
symptom.

SPEAKER_00
19:55

It
is.
It's
it's
very,
it's
very,
very
difficult.
So

The Hard Conversation About Driving

SPEAKER_00
20:00

the
question
of
driving
always
comes
up.
So
when
do
you
step
in
as
a
caregiver
and
say,
I
don't
think
you
should
be
driving
anymore?

SPEAKER_01
20:11

Yeah,
that's
a
really
difficult,
it's
a
difficult
situation.
I
mean,
like
we
talked
about
with
anasygnosia
too,
that
how
can
you
tell
somebody
that
they
shouldn't
be
driving
if
they
don't
even
realize
that
what's
happening
is
actually
happening.
Um
but,
you
know,
because
the
simp
some
of
the
symptoms
of
um
FTD
include
impaired
judgment
and
disinhibition
and
anasygnosia,
um,
that
really
does
raise
red
flags
around
safe
driving.
Um
but
it
is
such
an
individual
decision.
So
I
do
think
we
recommend
um
that
families
consult
with
their
physician
for
support,
navigating
navigating
the
situation
because
um
it
can
be
really
hard.
Um,
and
then
we
do
also
recommend
that
people
call
the
helpline
to
talk
about
different
strategies
to
prevent
harm
or
prevent,
you
know,
accidents
or
or
danger
and
stuff.
And
how
can
you
kind
of
navigate
this
very
sensitive
and
and
tricky
part
of
the
disease?

SPEAKER_00
21:13

I
was
grateful
my
mom,
well,
my
mom
was
never
she
never
liked
to
drive
anyway,
you
know,
she
only
liked
to
drive
local.
And
she
I
think
it's
when
she
she
kind
of
knew
maybe
something
wasn't
right,
but
she
couldn't
admit
it.
My
dad
had
bought
a
car
and
she
was
with
him
when
she
bought
the
car,
but
then
she
just
decided
that,
you
know,
he
bought
this
car,
she
hated
this
car,
this
car
was
too
big,
she
was
never
gonna
drive
this
car,
and
that
was
it.
She
just
wouldn't
drive
anymore.
And
I
looking
back,
I
think
that
was
probably
her
way
of
realizing,
you
know,
maybe
she
shouldn't
drive
anymore.
Cause
it
was
just
like
out
of
the
blue.
She
was
like,
I
hate
this
car,
I'm
not
gonna
do
I'm
not
doing
this.
And
we're
like,
Okay,
okay,
uh,
with
it.
Now,
my
dad,
on
the
other
hand,
who's
gonna
be
80,
uh,
I
don't
know.
That
could
be
a
little
bit
of
a
fight
with
him
with
the
driving.
I
don't
know.
Yeah.

SPEAKER_01
22:01

Yeah,
it
is
hard.
I
do
think
that
a
a
physician
can
really
help
kind
of
navigate
it
and
figure
out
like,
do
you
take
the
do
you
go
to
the
DMV?
Do
you,
you
know,
like
different,
different,
just
different
ways
to
approach
it.
And
each
person
is
so
different,
right?
So
she
was
like,
I'm
not
going
to
do
this
anymore.
Right.
Other
people
still
really
truly
want
to
drive.
And
that's
your
freedom.
That's
your
autonomy.
Oh,
right.
Um,
so
when
so
many
other
things
are
being
taken
from
you,
that
it's
you
can
really
understand
why
it's
so
hard
to
do
to
get
that.

SPEAKER_00
22:32

For
sure.
So
do
you
does
traumatic
brain
injury
have
any
effect
with
FTD?

TBI Risk And Disease Progression

SPEAKER_00
22:41

Do
you
think
do
they
think
that
might
be
a
cause
of
it?

SPEAKER_01
22:45

So
um
FTD
is
a
brain
disease.
Um
it's
not
thought
that
it's
associated
with
a
single
injury
or
a
trauma.
Um
most
people
with
a
traumatic
brain
injury
don't
develop
FTD.
Um,
and
most
people,
a
lot
of
people
with
FTD
don't
have
a
TBI
history.
So
um,
you
know,
it
sometimes
if
it's,
you
know,
um
repeated
severe
head
injuries
could
be
associated
with
FTD,
but
it
doesn't
imply
that
that's
what
caused
it.
Um
just
kind
of
raises
your
risk
factors,
um,
but
that's
not
necessarily
um
associated
directly.

SPEAKER_00
23:32

And
what
should
somebody
expect
as
the
degree
as
the
disease
progresses?
You
know,
like
especially
if
you
catch
it
a
little
early,
you
know.

SPEAKER_01
23:42

Yeah,
um,
so
with
progression,
with
FTD,
like
you
know,
I
said
earlier
that
for
one
person
it's
different
from
other
people,
you
know.
And
one
of
the
things
we
say
is
if
you've
met
one
person
with
FTD,
you've
met
one
person
with
FTD.
Right.
So
we
can't
always
predict
what
it
will
look
like
for
everybody.
Um
sometimes
it
can
be
very
quick.
Um,
and
sometimes
people
can
live
with
a
diagnosis
for
longer
than
a
decade.
Okay.
Um,
sometimes
20
years.

SPEAKER_00
24:15

Oh
wow.

SPEAKER_01
24:16

Um,
so
you
don't
always
know
when
you
get
a
diagnosis
what
that
will
look
like.
Um,
but
you
can
expect
that
as
the
disease
progresses,
um,
it
can
go,
it
will
broaden
from
just
one
area
of
your
brain
um
to
other
parts
of
the
brain
and
areas
of
functioning.
So
if
you
started
um
out
noticing
movement
symptoms,
it
might
progress
to
behavior
symptoms
um
as
time
over
time.
Um,
but
yeah,
the
journey
is
so
different
for
everyone
in
that,
in
that
way.
Um
and
it
can
be,
of
course,
devastating
to
get
a
diagnosis.
Um,
I
think
one
of
the
things
that
can
help
with
the
progression
of
FTD
or
really
any
um
any
cause
for
dementia
is
is
palliative
care.
Um,
you
know,
like
a
real
holistic
approach
to
care
that
includes
the
needs
and
and
desires
of
the
person
diagnosed.
Um,
it
prior
it
preserves
dignity
and
autonomy
for
as
long
as
possible.
Um
and
you
know,
we
do
hear
from
people
who've
been
diagnosed
themselves
that
they
feel
really
overlooked
and
discarded
and
alone
after
receiving
a
diagnosis.
And
palliative
care
is
just
such
a
wonderful
approach
to
holistic
care
that
they
really
do
take
see
the
person
for
who
they
are,
you
know.
Um,
so
not
that
that
will
change
the
progression
of
the
disease,
but
it
does
help
somebody
feel
more
heard
um
and
respected
and
honored
through
the
process.

SPEAKER_00
25:59

And
I
agree
with
you.
Uh,
you
know,
I
think
the
palliative
care
people
push
off,
they
think
that's
only
for
like
at
the
very,
very
end,
but
it
isn't.
You
can
bring
them
in
earlier.
And
most
of
the
time,
too,
they
help
the
caregivers
too.
Yes.

SPEAKER_01
26:14

With
yeah,
and
if
you
are
helping,
if
you're,
you
know,
preserving
dignity
and
autonomy
of
somebody
feels
actually
seen,
um,
it
really
does
help
with
like
escalated
behaviors
or
feeling
really
stressed,
and
it
helps
with
stress
in
the
home
too.
And
you're
right,
like
if
the
caregiver
feels
like
they're
also
part
of
it
and
that
they,
you
know,
and
they
see
their
loved
one
feeling
respected,
then
they
also
feel
um
a
little
bit
of
comfort.
It
helps
um
and
just
it
helps
something
that
is
so
difficult
to
face
and
difficult
to
go
through,
um,
be
a
little
less

Palliative Care And Symptom Treatment

SPEAKER_01
26:48

so.

SPEAKER_00
26:48

Now,
are
there
any
approved
treatments
or
medications
right
now
on
the
market
for
FTD?

SPEAKER_01
26:54

Yeah,
currently
no.
Um
there
is
research
being
done,
of
course.
Um,
but
for
symptom
management,
there
are
some
medications.
So
if
you
have,
um
if
you're
working
with
your
doctor,
um,
your
neurologist,
you
can
like
if
there
are
symptoms
that
are
challenging,
because
a
lot
of
the
symptoms
with
um
FTD
are
very
difficult.
Um,
so
that
you
know,
you
can
you
can
talk
to
your
doctor
about
um
what
kind
of
medication
can
help
with
those
symptoms.

SPEAKER_00
27:22

And
you
mentioned
uh
support
groups,
and
I
noticed
you
have
those
listed
on
your
website
as
well,
correct?

Support Groups, Helpline, And Next Steps

SPEAKER_01
27:30

Yes,
we
do.
And
you
know,
support
is
such
a
lifesaver.
Um,
we
encourage
everyone
to
build
support
early,
however
that
looks
like
for
you.
Um,
we
know
many
caregivers,
um,
a
lot
of
caregivers
don't
even
reach
out
to
our
helpline
until
they're
already
drowning.
So
um
we
definitely
encourage
early
looking
into
what
options
you
have.
Um,
grief
is
just
underlining
throughout
the
FTD
journey.
And
um,
it
really
does
help
that
uh
having
a
support
group.
Some
people
are
resistant
or
they
feel
like,
oh,
I'm
not
into
going
sitting
around
in
a
support
group
and
talking
about
my
feelings.
But
um
we
really
encourage
people
to
try
it.
There
are
real
practical
tips
um
and
and
resources
that
are
shared
in
these
meetings.
And
also
with
FTDs,
especially,
it
is
so
misunderstood
in
like
the
among
the
general
public
that
when
you
find
other
people
who
are
who
are
going
through
this
and
facing
this
together,
that
you
feel
so
much
less
alone.
Um
and
can
really,
and
it's
it's
part
of
respite
too,
you
know,
you're
taking
that
hour
to
talk
to
other
people
who
are
going
through
it.
And
it
really
can
kind
of
help
bring
you
down
um
from
all
the
way
up
here
in
the
stresses
of
caregiving.
Um
and
we
do
also,
so
we
do
have
groups
for
um
for
caregivers
throughout
the
country.
We
do
have
some
that
meet
in
person.
We
have
a
lot
that
meet
virtually
because
that's
really
easy
to
access
for
caregivers.
You
don't
always
have
to
find
somebody
to
take
care
of
your
loved
one.
Um
and
then
we
also
do
have
groups
for
per
for
people
who
are
diagnosed
that
they
can
join.
Because
we
have
seen
in
the
last
few
years
a
huge
increase
in
people
getting
diagnosed
a
little
bit
earlier,
and
they
really
want
that
support
too.
So
um
we've
we've
had
we
do
have
groups
for
people
who
are
diagnosed,
and
and
we
want
to
be
there
and
support
them
too,
because
it's
so
hard
to
receive
that
diagnosis
and
then
what
you
know,
what
do
I
do
with
this?
So
um
coming
together
is
a
really
good
thing.

SPEAKER_00
29:44

And
I
think
one
thing,
and
and
I've
joined
different
support
groups,
and
I
think
what
a
lot
of
people
don't
realize
is
that
when
you
go
to
the
support
group,
whether
it's
virtual
or
it's
in
person,
you
don't
have
to
say
anything
if
you
don't
want
to.
You
know,
you
can
just
listen.
Yeah,
and
I
have
found
I
agree
with
you
a
hundred
percent
that
when
I
started
talking
to
other
family
members
that
their
family
you
know,
their
loved
ones
had
dementia,
there's
this
instant
bond,
and
you
like
just
understand
what
they're
saying.
And
you
even
can
laugh
at
times
about
things
that
they
said
or
did,
but
you
just
they
just
understand.
You
don't
have
to
explain
everything,
you
know.
They
and
it
it
does
make
you
feel
better.

SPEAKER_01
30:25

Yeah,
and
I
think
um
one
of
the
that's
somebody
just
recently
said
this
to
me
that
that
it's
her
tribe,
right?
That
she's
she
went
to
this
group
and
it's
those
are
her
people.
So
they
meet,
you
know,
outside
of
group,
yeah
um,
yeah,
and
and
get
together.
And
it's
just
having
people
you
don't
have
to
explain
yourself
to,
um,
and
that
there's
no
judgment,
right?
And
and
unfortunately,
some
of
the
symptoms
of
FTD
can
really
be
stigmatizing.
Um,
and
people
hesitate
to
talk
about
it.
But
if
you're
in
a
group
of
other
people
who
are
going
through
the
same
thing,
um,
even
if
it's
a
different,
if
it
looks
different
for
everyone,
you
know
you're
not
gonna
get
judged.
Um,
and
that
you're
there
truly
because
you
love
your
person
and
you
want
to
help
them
and
you
want
to
be
there
for
them,
but
you
just
need
to
figure
out
how
do
I
cope
with
this
in
a
way
that
is
healthy
and
safe.
Um
and
you
know,
with
the
FTD
support
groups,
because
it's
uh
a
leading
cause
of
younger
onset
dementia,
a
lot
of
care
partners
are
younger
and
they
sometimes,
you
know,
they
might
try
another
dementia
group,
a
support
group,
and
feel
like
they're
not
around
people
that
get
them
or
that
are
understanding
what
they're
going
through.
So
finding
an
FTD
support
group
can
be
really
helpful
for
you
if
you
don't
kind
of
fit
like
what
you
think
of
when
you
think
of
a
dementia
support
group.
Um,
so
we
do
have
like
groups
for
parents
who
have
young
kids
in
the
home
and
their
spouse
has
it.
Um
and
they,
you
know,
just
and
young
adults
who
are
caring
for
their
parent.
Um,
we
have
a
group
for
17
to
26-year-olds
who
can
come
and
and
talk
to
each
other
and
get
support.
So
um,
yeah,
we
have
a
whole
lot
of
groups
on
our
website.
Um,
it's
all
there.
But
also,
if
you're
feeling
overwhelmed
and
I
just
can't
even
look
at
this
list
of
groups,
you
can
call
the
helpline.
And
and
we
know
that
what
sometimes
caregivers
are
just
like,
I
can't
even
do
that.
I
can't
take
that
step.
But
the
helpline
is
there.
Um,
and
I
just,
you
know,
just
to
share
their
number,
I
want
to
shout
them
out.
But
their
phone
number
is
866-507-7222,
or
you
can
email
them
at
info
at
theaftd.org.
Um,
and
you
just
put
it
out
there,
I
need
a
support
group,
and
they'll
help
you
find
the
right
one
for
you.
Yeah,
it's
it's
they
try
to
make
it
as
easy
as
possible.

SPEAKER_00
33:02

And
I'll
make
sure
I
put
that
on
there.
Yeah,
because
sometimes
as
a
caregiver,
you
have
so
many
lists
going
on
that
you're
like,
I
just
can't
right
now.
But
if
you
I
know
something
simple
that
you're
like,
okay,
I
can
call
this
number
or
I
can
send
this
email,
and
it
just
helps
so
much
with
all
of
that
for
it.
Um,
and
I
know
we
could
talk
forever
and
on
about
this
because
it's
such
an
interesting
um,
it's
it's
different
than
a
lot
of
the
other
dementias,
but
yet
it
kind
of
falls
into
play
with
it.
And
I
know
this
one
too,
it's
been
in
the
news
a
little
bit
more
with
some
other
celebrities,
famous
people
that
have
we've
heard
they've
been
diagnosed
with
this.
So
like
people
start
talking
about
it.
And
it
should
have
been
talked
about
anyway.
All
the
dementia
should,
yeah.

SPEAKER_01
33:42

Yeah,
that's
but
it
is
really
the
getting
that
awareness
and
and
more
public
awareness
that
people
do
under
they're
like,
that
sounds
familiar.
So
it
is,
it
is
helpful
though.
And
and
we
and
with
that,
we
are
seeing
an
earlier
diagnosis
in
the
in
the
disease.
So
that
is
that
is
just
helpful
for
families
um
when
they
get
that
earlier
accurate
diagnosis.

SPEAKER_00
34:04

Yeah,
because
sometimes
you're
like,
what
is
wrong
with
this
person?
They're
you
know,
and
you
just
you
don't
always
think
right
away,
it
could
be
something
really
you
know,
neurological
or
uh
neurodegenerate
uh
Yeah,
you
think
it
could
be
a
midlife
crisis,
right?

SPEAKER_01
34:21

Or
like,
you
know,
I
guess
I'm
just
gonna
get
divorced.

SPEAKER_00
34:25

But
it's
actually
a
brain
disease.
Yeah.
Yeah.
Yeah,
with
it.
Because,
you
know,
uh
with
all
the
dementia,
some
you
know,
sometimes
they
lose
their
inhibition
and
they
say
things
and
they
do
things,
and
you're
like,
oh
my
god,
what
is
going
on?
You
know,
and
to
help
figure
that
out.

SPEAKER_01
34:40

It's
so
hard
not
to
take
that
personally
too
when
it's
yeah,
when
it's
someone
that
you've
loved
for
like
20
years,
and
then
all
of
a
sudden
this
change
is
happening
and
you
don't
understand
it.

SPEAKER_00
34:51

Exactly.

AFTD Website, Conference, Closing

SPEAKER_00
34:52

So
the
website
is
theftd.org.
Um,
it's
the
AFTD.

SPEAKER_01
34:59

Okay.
Yes.
The
A-A
G-A-F-T-D
dot
O-R-G.
Okay.
And
there's
so
much
information
on
the
website.
Um,
and
there's
also
like
on
the
homepage
and
on
every
page,
there's
a
a
button
for
the
helpline
up
in
the
upper
right-hand
corner.
Okay.
You
can
click
on
that.
You
can
even
schedule
a
call.
So
whatever
works
for
your
time,
you
don't
have
to
wait
for
a
call
back.
You
know
when
you're
gonna
get
your
call.
So
um
that's
definitely
a
great
option,
too.
Um,
and
then
there's
just
so
much
information.
We
have
um
a
ton
of
webinars.
Uh,
we
are
also
on
social
media,
so
um
that
is
something
that's
really
helpful
for
people
too.
We're
on
Instagram
and
on
Facebook,
um,
on
TikTok,
LinkedIn.
Um,
and
I'm
sure
that
I'm
forgetting
one
of
them
too,
but
um
there's
uh
the
the
information
is
there.
We
share
a
lot
of
updates
about
events,
um,
and
and
we
have
an
annual
education
conference
that
is
for
the
community.
Um,
and
also
we
see
a
lot
of
healthcare
professionals
come
too,
and
that's
where
you
really
get
to
know
um
what
the
lived
experience
is
like.
Um,
it
is
in
person
and
it's
also
virtual.
So
um
that's
in
May
every
year,
and
um
it's
free
to
attend.
So
um
it's
something
to
really
put
um
in
the
back
of
your
mind
if
you're
if
you're
thinking
about
it.
Um,
it's
very
informative,
but
it's
also
a
place
to
come
together
with
the
community
and
um
to
learn
more
about
you
know
different
resources
and
um
you
know
evidence-based
treatments
and
things
like
that.

SPEAKER_00
36:43

So
well,
that
that
is
awesome,
all
this
information.
So
I'll
make
sure
I
put
all
this
on
there
so
people
can
get
the
information
that
they
need.
So
thank
you
so
much
for
joining
us
here
today.
I
I've
learned
so
much.
Thanks
for
having
me.
Yes,
I
have
learned
so,
so
much.
So,
like
I
said,
I'll
put
it
all
on
there.
So
hopefully
everybody
has
enjoyed
this
conversation
and
you
got
a
lot
of
information
as
well
for
this
particular
form
of
uh
dementia
and
neurodegenerative
diseases.
So
I
hope
you've
enjoyed
your
cup
of
tea,
your
cup
of
coffee,
or
if
you're
having
that
really
bad
day,
a
glass
of
wine,
and
please
join
us
for
another
edition
of
Patty's
Place.