Understanding Aphasia — When Words Get Lost

In this episode, Lisa explores one of the most challenging and misunderstood symptoms of Alzheimer’s disease — aphasia, the loss of language and communication abilities that often accompanies dementia.

Through a touching real-life story from her book Truth, Lies & Alzheimer’s – Its Secret Faces, Lisa introduces us to Harvey in “The Pill Box Story.” Harvey’s daughter believed her father could no longer understand or care for himself. But when Lisa visits, she discovers that while Harvey struggles to find the right words, his mind and awareness are far more intact than anyone realized.

This powerful story illustrates how aphasia affects speech, understanding, reading, and writing, and how these challenges can easily be mistaken for cognitive decline. Lisa explains why communication difficulties don’t always mean loss of comprehension — and how loved ones can learn to see the difference.

Listeners will gain insight into:

• What aphasia really is and how it progresses in dementia
• How families often misinterpret communication loss as a total cognitive decline
• Ways to support and engage loved ones living with aphasia
• Practical communication tips for caregivers to reduce frustration and improve connection

Key Takeaway:

Even when words are lost, understanding and emotion remain. People living with Alzheimer’s and related dementias often know far more than they can express — and with patience, empathy, and awareness, we can still connect deeply.

Resources Mentioned:

Truth, Lies & Alzheimer’s – Its Secret Faces by Lisa Skinner

Listen to more episodes at truthliesalzheimers.com

About the Host:

Author Lisa Skinner is a behavioral specialist with expertise in Alzheimer’s disease and related dementia. In her 30+year career working with family members and caregivers, Lisa has taught them how to successfully navigate the many challenges that accompany this heartbreaking disease. Lisa is both a Certified Dementia Practitioner and is also a certified dementia care trainer through the Alzheimer’s Association. She also holds a degree in Human Behavior.

Her latest book, “Truth, Lies & Alzheimer’s – Its Secret Faces” continues Lisa’s quest of working with dementia-related illnesses and teaching families and caregivers how to better understand the daunting challenges of brain disease. Her #1 Best-seller book “Not All Who Wander Need Be Lost,” was written at their urging. As someone who has had eight family members diagnosed with dementia, Lisa Skinner has found her calling in helping others through the struggle so they can have a better-quality relationship with their loved ones through education and through her workshops on counter-intuitive solutions and tools to help people effectively manage the symptoms of brain disease. Lisa Skinner has appeared on many national and regional media broadcasts. Lisa helps explain behaviors caused by dementia, encourages those who feel burdened, and gives practical advice for how to respond.

So many people today are heavily impacted by Alzheimer's disease and related dementia. The Alzheimer's Association and the World Health Organization have projected that the number of people who will develop Alzheimer's disease by the year 2050 worldwide will triple if a treatment or cure is not found. Society is not prepared to care for the projected increase of people who will develop this devastating disease. In her 30 years of working with family members and caregivers who suffer from dementia, Lisa has recognized how little people really understand the complexities of what living with this disease is really like. For Lisa, it starts with...

Episode Transcript

Lisa Skinner (00:00):
Hello everyone. Welcome back to another new
episode of the truth, lies andAlzheimer's show. I'm Lisa
Skinner, your host. I want togive you all a quick reminder
that you can always find new andupdated information and
resources on our website bygoing to minding dementia.com.

(00:25):
Today, I am going to explain acommon symptom that we often see
with dementia, called aphasia.Now aphasia is a communication
disorder that results fromdamage or injury to language
parts of the brain. It's morecommon in older adults,

(00:49):
particularly those who've had astroke. Aphasia gets in the way
of a person's ability to use orunderstand words, but aphasia
does not impair a person'sintelligence. People who have
aphasia may have difficultyspeaking and finding the right

(01:11):
words to complete theirthoughts. They may also have
problems understandingconversations, reading and
comprehending written words,writing words and using numbers.
What causes aphasia? Aphasia isusually caused by a stroke or

(01:33):
brain injury with damage to oneor more parts of the brain that
deal with language, according tothe National aphasia
Association, about 25 to 40% ofpeople who survive a stroke get
aphasia. Aphasia may also becaused by a brain tumor, a brain

(01:58):
infection, or dementia, such asAlzheimer's disease, and in some
cases, aphasia is a symptom ofepilepsy or other neurological
disorder. There are severaldifferent types of aphasia. Each
type can cause impairment thatvaries from mild to severe. So

(02:23):
these are the different types ofaphasia. One is called
expressive aphasia, or nonfluent. And with expressive
aphasia, the person knows whathe or she wants to say yet has
difficulty communicating it toothers. It doesn't matter

(02:43):
whether the person is trying tosay or write what he or she is
trying to communicate, thenthere's receptive aphasia, or
fluent with receptive aphasia,the person can hear a voice or
read the print, but may notunderstand the meaning of their

(03:04):
message. Oftentimes, someonewith receptive aphasia takes
language literally their ownspeech may be disturbed because
they don't understand their ownlanguage. There's a gnomic
aphasia where the person hasword finding difficulties. This

(03:26):
is called anomia, because of thedifficulties, the person
struggles to find the rightwords for speaking and writing,
and there's global aphasia. Thisis the most severe type of
aphasia. It is often seen rightafter someone has had a stroke

(03:48):
with global aphasia, the Personhas difficulty speaking and
understanding words. Inaddition, the person is unable
to read or write. And thenfinally, there's primary
progressive aphasia. This is arare disorder where people
slowly lose their ability totalk, read, write and comprehend

(04:14):
what they hear in conversationover a period of time. With a
stroke, aphasia may improve withproper therapy. There is no
treatment to reverse primaryprogressive aphasia. People with
primary progressive aphasia areable to communicate in ways
other than speech. For instance,they might use gestures, and

(04:40):
many benefit from a combinationof speech therapy and
medications. Now, aphasia may bemild, or it can be severe. With
mild aphasia, the person may beable to converse yet has trouble
finding the right word or under.Standing complex conversations,

(05:04):
severe aphasia limits theperson's ability to communicate.
They may say little and may notparticipate in or understand any
conversation. Additionally,aphasia also refers to the loss
of spoken language or speechcomprehension, reading and

(05:24):
writing abilities, and is due toneuropathology, for example,
having Alzheimer's disease, andit's caused by the deterioration
of neural tissue accompanied bybehavioral and functional
decline, including communicationabilities as Alzheimer's disease

(05:47):
and other related dementiacontinue to destroy brain cells,
a significant symptom This oneknown as aphasia, develops and
aphasia does worsen as thedisease progresses. It can be
very common symptom toAlzheimer's disease, and cannot

(06:12):
only include the loss of spokenlanguage or speech
comprehension, reading andwriting abilities, but also the
ability to process what otherpeople are saying, and this is
due to the brain damage causedby Alzheimer's disease. So I am
going to illustrate a scenarioof what aphasia might look like

(06:38):
in real life by sharing with youa true story taken from my book
truth, lies and Alzheimer's. Itssecret faces. It's called the
pillbox story. Well, I wascalled over to a client's house
to assess a gentleman who hadbeen diagnosed with Alzheimer's

(07:00):
disease. He was living with hiswife, who was his primary
caregiver, but his daughterCarly, who was concerned about
him still living at home, as shedescribed him as being unable to
do anything for himself andcould not communicate anything
with his family members. I wasactually expecting to find

(07:25):
somebody who would be based onhow it was described to me in
the later stage of Alzheimer'sdisease, but to my surprise, he
was much more highly functioningthan I expected him to be so I
was introduced to Harvey, asCarly's friend, who was stopping

(07:47):
by to say a quick hello, becausethey didn't want him to know
that they had asked aprofessional to come over to
assess him. The first thing hesaid to me, which I thought was
so cute. Oh, you must be Carly'sfriend who's going somewhere.

(08:08):
They had told him that I wasstopping by on my way to
Ashland, Oregon, ShakespeareFestival. Well, Harvey did not
remember where they said I wasgoing, but he did remember that
I would be stopping by on my waythere
someone as far gone as Carly haddescribed to me would not have

(08:29):
been able to retain that muchinformation, and that was my
first clue. I then sat down atthe kitchen table with him and
noticed a blue pill organizersitting on the window sill
marked with the letters, m, t,w, T, H, F, S, S. So I pointed

(08:50):
to it and asked him what it was.He replied to me that that was
his thing. I asked, well, whatdoes it do Harvey? And he said,
well, the things I put in thereare the things that keep me
alive. I was taken aback by thatresponse. I continued with

(09:13):
Harvey, well, how do you knowwhere to put the things? Well,
he couldn't recall the word formedication, or what those
letters on the organizer stoodfor, Monday, Tuesday, Wednesday,
Thursday, Friday, Saturday,Sunday. But he did show me how

(09:33):
he took a pill from each of hisprescription bottles and place
them in that organizer,beginning in the leftmost
compartment, and then the nextone to the right, and so on and
so on until each pill wascorrectly placed in a

(09:53):
compartment. Then I heard hiswife Darlene call out and say,
yeah, the old call. Roger getsthem right every time I do check
to make sure. Carly, as it turnsout, had been mistaking her
father's decline in verbalskills for a decline in his

(10:14):
cognitive skills, but it wasvery apparent to me by then that
he understood much more thanthey believed he did. He was
actually incredibly still veryhighly functioning. After my
visit, I wrote up my assessmentof Harvey with some

(10:36):
recommendations of what theycould provide for him in the way
of activities and care optionsto keep him engaged and active,
to slow down his decline and tokeep him as independent for as
long as he was capable based onhis obvious skill level, and to

(10:57):
avoid the temptation to doeverything for him. And they
agreed to that plan. Furtherthoughts about this scenario as
Alzheimer's disease and otherrelated dementias destroy brain
cells, a significant symptom,the one we've been talking
about, known as aphasia, startsto appear. Aphasia does worsen.

(11:23):
As the disease progresses, itbecomes harder to remember the
right words and process whatothers are saying, as we heard
in the pillbox story, Harvey didsuffer from aphasia, and it
presents itself in manydifferent ways, but the thing to

(11:45):
remember as this condition is aresult of damage being done to
the communication centers of thebrain. It was evident in this
story that Harvey was veryhighly functioning cognitively.
He understood everything thatwas being said to him. However,

(12:07):
he had difficulty finding thecorrect words to use, as well as
difficulty articulating histhoughts. For example, when I
did ask him what that pillboxwas, he couldn't remember the
correct name for it, even thoughit was obvious to me that he
knew and understood itsfunction, a more cognitively

(12:30):
impaired person would not havebeen able to recognize what a
pillbox was or what it was usedfor, As Harvey did. There were
also a lot of misperceptionsfrom the family members in that
story, which is perfectlynatural and by no means a
negative reflection on thefamily members. We all have

(12:54):
blind spots, especially when wedon't know what we don't know,
and that includes me. It'simportant to remember that what
connects us with others in theworld is our ability to
communicate. It's the ability toget and give information, as
well as express our needs andfeelings. Using language is the

(13:18):
most common form ofcommunication that we can all
use effectively, such as bodylanguage, facial expressions and
gestures. But sadly, withdementia, the ability to
communicate is gradually lost.It is not uncommon for people

(13:41):
with dementia to substitutewords when they can, can't think
of the words that belong, orthey unintentionally make
something up. There's actually aname for that. It's called
confabulation. The first problemis typically with finding the
right words that fit into whatthey are trying to tell us later

(14:04):
in the disease, a person mayhave even more difficulty
expressing thoughts and ideas.Their brains might know what
they want to say, but they losethe ability to actually
articulate those thoughts. Thisdecline in the ability to
communicate can often lead tofrustration, understandably and

(14:27):
also emotional outbursts, alsothe ability to understand what's
being said to them, as Imentioned, also decline
significantly. Words become lesseffective to them, and
eventually, efforts tocommunicate will become shorter

(14:47):
and simpler, and may be limitedto single words and gestures,
but we will explore several waysin which we can more effectively
communicate with peoplesuffering from. Dementia and
aphasia in upcoming episodes,but eventually, family members

(15:08):
and caregivers will have tolearn to rely on visual cues and
touch. So that is theinformation that I have planned
for this episode today of thetruth lies in Alzheimer's, and I

(15:28):
want to just give you anothergentle reminder that if you'd
like more information, pleasevisit our website at minding
dementia.com, thanks again forbeing here today. I appreciate
you taking the time to listen tothis informational episode. And

(15:51):
as always, I wish you a happyand healthy week ahead, and I'll
be back next week with anothernew episode of the truth lies
and Alzheimer's show, onceagain, I'm Lisa Skinner, your
host.