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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.
How can I make this easier to do with the
abilities that are available right now?
We're not lowering the person's
value or treating them like a child.
We are changing the support
that they need to have a better
chance of being successful,
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.
last week, we started talking about
the first part of a Signal Guide
navigation system, know the waters.
And knowing the waters really comes down
to just three things: know the diagnosis,
know the person, and notice the moment.
And today, we're gonna start talking
about the diagnosis that most people
think about when they hear the word
dementia, and that's Alzheimer's disease.
I wanna start with something that
I hear from families all the time.
They'll, say something like,
"I know she can remember.
She sang every word to an old song
yesterday, but then today she says
nobody told her about the appointment."
Or maybe it sounds something like this:
"He remembers exactly what happened
when he was in the Navy, but he can't
remember that he already ate lunch."
That can be really hard
to make sense of, right?
It can even look selective sometimes,
maybe that they're kinda playing with you.
If someone can remember one thing so
clearly, of course, you're gonna wonder
why they can't remember something
that happened five minutes ago.
But unfortunately, memory isn't
one single box in the brain where
everything gets stored together.
Different types of memories rely on
different systems, and with Alzheimer's,
the ability to take in and hold onto
new information is often affected
very early in the disease process.
So the person may still be able to
sing a familiar song, or repeat a
prayer that they've said for decades,
or maybe even tell a story from their
childhood, but those memories have been
practiced and reinforced for years and
stored in a certain place in the brain.
But the conversation that you had this
morning was stored in a different place in
the brain, and it probably wasn't stored
in a way that they can find it again.
They're not ignoring what you said, and
they're not choosing to remember the
song and forget the appointment, right?
And saying, "I told you already,"
can't bring back the information
that never really got stuck in
their brain in the first place.
Just understanding that can change the
whole tone of a moment with that person.
Instead of asking, "Why
don't you remember?"
We can ask something like, "How
can I give you the information
that you need right now?"
And that is really the point
of knowing the diagnosis.
It helps us stop expecting an ability
that may not consistently be available
anymore and start to think about what kind
of support might work better for them.
So let's back up for just a second.
Alzheimer's disease is a disease
of the brain, and it is the
most common cause of dementia.
Dementia is really just
a larger umbrella, right?
It tells us that there are changes
in thinking, and, those changes
are affecting everyday function.
We talked about that in previous episodes.
Alzheimer's is one disease that can
cause those changes too, and Alzheimer's
is not a normal part of getting older.
Very important to understand that.
Age is the biggest known risk
factor for developing Alzheimer's,
but normal aging and Alzheimer's
disease are not the same thing.
We all forget sometimes
why we walked into a room.
We will all lose a name from our
thought and remember it later, and
Those are normal lapses in our memory.
That's very different than having
more and more difficulty with learning
information or managing familiar
tasks, finding our way, using our
language, or even making decisions.
Alzheimer's usually develops very
gradually, and changes in the brain
begin long before people around
us can clearly see the symptoms.
It takes years for it
to be detected usually.
And that word gradually
is really important.
If someone with Alzheimer's suddenly
becomes much more confused or sleepy or
maybe more restless or weaker or just
very unlike themselves over a matter
of hours or days, please do not assume
that the dementia is just getting worse.
A sudden change may be a signal
that something else is going on.
It could be an infection.
It could be dehydration, pain.
It could be a medication issue or
some other medical concern, and that
needs medical attention immediately.
That's something that we call delirium.
Alzheimer's changes over time.
It does not usually explain
a dramatic change overnight.
Now, memory gets most of the attention
when we talk about Alzheimer's, and
that makes sense because trouble
learning and remembering new information
is very common with this disease.
But Alzheimer's can also change attention
and language as well as judgment,
someone's problem-solving abilities, their
visual-spatial processing, and even the
ability to do things in the right order.
We call that sequencing.
And let me show you what I mean because
those words sound pretty clinical until
you see them in everyday life, okay?
Think about making a pot of coffee, okay?
Someone may have made coffee
every morning for fifty years.
My husband makes the coffee at our house.
But then one day, you find that there are
grounds in the water reservoir, and the
pot is sitting on the counter while the
coffee is running out all over the place.
And it would be really easy to say,
"He forgot how to make coffee."
And memory may be a part of it, but think
about everything that the brain has to
do for that one particular task, okay?
He would have to find the right items,
recognize what each one is for, put
the steps in order, pay attention long
enough to finish the task, and then
notice if something doesn't look right.
That is a lot of brain work
hiding inside one pot of coffee.
Or think about a busy restaurant, okay?
The person may hear your voice, but
their brain has to separate it from
the music, and the dishes, and the
chairs moving, and the conversation at
the next table, and they have to hold
on to the beginning of your sentence
long enough to understand the end.
What looks like she isn't
listening to me may actually be
her brain can't sort through all
of the information fast enough.
And the same thing can
happen with dressing, right?
"Go get ready" sounds simple to
us, but it includes a whole lot
of decisions and steps, okay?
If sequencing has become difficult, the
person may put on three shirts and no
pants or stop halfway through because
they can't figure out what comes next
Those aren't just memory problems, right?
They're changes in function.
And once we understand that, we
can start changing our support.
If new information is hard to hold
onto, a long explanation is probably
not going to help the situation.
If sequencing is difficult, "Go get ready"
might be too broad of a ask for them.
So we might start with something
like, "Here's your shirt," and
then offer one step at a time.
If attention is overwhelmed, turning
off the TV may help more than
saying the same thing louder to them
If finding the words are hard, the
person may need more time to answer
without someone jumping in to finish
every single sentence for them.
And if visual spatial processing is
changed, they may have trouble judging
a step or finding a white toilet in
a white bathroom, or seeing an object
that they need in a cluttered dresser.
There's no one perfect Alzheimer's
strategy hiding in the diagnosis,
but the diagnosis gives us clues.
It helps us to ask which ability this
moment may be depending on or whether
the ability is still even reliable.
One of the most helpful things
we can do is notice how often
we rely on the person's memory.
We say things like, remember, we
have a doctor's appointment at two.
Remember, your daughter's coming tomorrow.
Remember, you already took your medicine.
Remember, we talked about this."
We say it without thinking, but if
remembering new information is the ability
that is changing, then asking the person
to remember harder is not really support
Sometimes we can put the information
somewhere besides their memory.
So maybe the appointment goes on
a large calendar that they can
actually use, or maybe a simple
note that says, "Susan is at work.
She'll be here after dinner."
Or maybe the medication is managed
with a system that doesn't depend
on the person having to remember
whether or not they took it.
Or maybe we just stop announcing
tomorrow's appointment over and over if
every announcement creates fresh worry.
We can share that information a little
bit closer to the time that they need it.
What helps one person may completely
confuse another person, and something
that works now may stop working
later, and that's why we keep
watching the person's response.
We have to figure out, is it helping?
Is it making the task easier?
Or is it asking for an ability
that they no longer have in the
same way that they did before?
And this is also why I want
us to think about how often we
quiz people without meaning to.
"Don't you remember who this is?
What did you have for breakfast?
Where are we going?
And I understand why this happens, because
sometimes we're just checking because
we're worried about their impairment.
Sometimes we hope that the answer
will just reassure us that things
aren't that bad, and sometimes
we're simply just trying to make
conversation with the person.
But when the person can't find the
answer, it can feel like a test that they
didn't even know that they were taking.
And instead of asking, "Do you
remember this is your niece Maria?"
We should say something
like, "Maria's here.
She came to have lunch with us."
Instead of, "What did you do today?"
We might say, "I heard you spent
some time in the garden today.
Tell me about the flowers We are
giving the person a place to enter
the conversation without first
having to prove that they remember.
And even when the details of the
conversations are gone, the feeling
of the moment may still linger.
The person may not remember exactly
why they feel uneasy when it's time
for a shower, but the uneasiness
is still very real for them.
And they may not remember every single
detail of a visit, but they may remain
relaxed after spending time with someone
who helped them feel safe and connected.
So the way we approach the
person still really matters.
Our tone, our pace, And whether
we come into the moment ready to
correct or ready to connect all
become part of their experience.
Now, there's one caution
that I wanna add here.
Once we know someone has Alzheimer's,
it can be tempting to explain
everything through that lens, but the
person can still have pain, and poor
sleep, or constipation, or hearing
loss, or vision changes, grief,
hunger, boredom, medication side
effects, all the same human needs
that they had before their diagnosis.
And the diagnosis is
one part of the water.
It's not the whole ocean.
So we still need to know the person.
We need to notice the moment, and
when something changes suddenly,
we still need to consider whether
the person needs medical attention.
Alzheimer's doesn't look exactly
the same in everyone either.
Memory problems are common early,
but some people first notice
more trouble with words or visual
information, maybe even judgment
or other types of thinking skills.
People also change at different rates.
So when someone says, "My mother had
Alzheimer's, and she never did that,"
they may be absolutely right about their
mother, but that does not make it a
rule for every person with Alzheimer's.
The diagnosis helps us understand
patterns, but it should
never erase the individual.
So here's what I hope you
carry from today's episode.
When someone remembers an old song but
not what you told them five minutes
ago, they're not being selective.
Those memories are asking different things
from their brain, and when a familiar
task becomes difficult and falls apart.
Look beyond memory.
What attention, language, judgment,
sequencing, or visual information
does that task require of them?
And then ask one more question:
How can I make this easier to do with the
abilities that are available right now?
Maybe that means fewer words.
Maybe that means giving them one
step at a time, or bringing them
into a quiet room, or giving them a
visual cue, or information offered
closer to the time that it's needed.
We're not lowering the person's
value or treating them like a child.
We are changing the support that they
need to have a better chance of being
successful, and that's the purpose of
knowing the diagnosis, not to put the
person in the box, but to just understand
the waters a little bit better so that we
can choose our direction with more care.
Next week, we're gonna talk about Lewy
body dementia, and we're gonna look
at why attention and alertness may
seem to come and go, and how movement
and visual experience can be part
of this picture too, and also why
medication sensitivity is something
care partners and health professionals
need to understand very clearly.
Until then, notice how often
daily life asks the person to
remember, and when you catch it, ask
yourself, Can I put the information
somewhere besides their memory?
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