Conversations with Someone Who Has Dementia
An exercise in patience
At first, when Dad’s dementia was barely noticeable, you could have a conversation with him and not realize he was declining. In fact, he was always great at faking what he didn’t know.
Who is that pretty girl you brought with you?
My mother would call that being a silver-tongued devil, and I guess sometimes he was. Even in his dementia addled mind, he could be a real flatterer if he wanted to be.
But conversations with someone who has dementia can be very challenging and today, I’d like to help you understand the impact dementia has on language and how you can keep your sanity in the midst of it.
Which Part of the Brain Manages Speech?
Manages might not be the right word for the question above, but I think you understand where I’m heading.
First, let’s tiptoe into the definition of language versus speech.
Language
Your language is based on the social context you give it. It consists of socially constructed rules that include:
Meaning - also sometimes called semantics - read can be I read a book or I want to read that - two different words with different meanings; each word has a meaning
How to make new words like taking the word resistible and making a word that means the opposite - irresistible; there are pieces of words that change the meaning
Grammar - I went to the grocery store versus I goed to the grocery store
Social context - Would you please get me the sugar versus Get me the sugar, NOW!
People often check a box on a form that identifies what language they speak - English, Spanish, Italian, French…I could go on and on.
But people speaking the same language, in my case, English, may still use language differently, depending on which part of the country they call home, or did during their language-forming years.
Someone who cannot understand other people because they are speaking another language or who can’t explain their feelings, thoughts, and ideas has a language disorder. Obviously this doesn’t include when you’re an English speaker talking to someone who speaks Spanish or another unfamiliar language.
Speech
Speech is a whole different critter. Speech is how language is expressed. It includes:
How we form the words, or articulation
How our vocal cords enable us to make the sounds that form the words - our voice
The way in which we use rhythm, intonation, stress, and other attributes of speech to make the sounds that make those words - fluency and prosody
When someone has difficulty forming the words or using their voice to articulate their thoughts and needs, they have a speech disorder.
Speech disorders are common for people with assorted brain disorders, like Dementia or Traumatic Brain Injuries (TBI), as well as being the survivor of a stroke.
What Part of the Brain is in Charge Here?
There are multiple areas of the brain responsible for various aspects of speech and language. Let’s look at each one more in depth.
Broca’s Area
Without going into too much detail, Broca’s Area is located in the frontal lobe of the brain. As you might guess, the frontal lobe is located in the front of the brain. It’s what sits behind your forehead. It’s located on the left side of the frontal lobe.
The frontal lobe extends from about the middle of the top of your head on to the front and goes down maybe as far as your eyes (keep in mind, this is general) before sweeping back up to that midpoint up top.
This part of the brain helps you initiate and coordinate what’s needed to create speech, meaning how well you’re able to articulate what it is you want to say. Some dementia patients and TBI patients simply cannot find the word they’re looking for.
Broca’s Area also helps you organize your thoughts and create grammatically proper sentences. It also helps on the other end, as you attempt to organize and understand what you hear.
What this means is that someone with damage to Broca’s Area might have difficulty formulating sentences that make sense. They also might find it challenging to understand a complex sentence. In other words, keep your interactions more basic and less complex so they can understand.
Some new studies indicate that Broca’s Area might have more responsibilities than we thought, including:
Motor control
Working memory
The processing of non-verbal cues - i.e. body language, etc.
Wernicke’s Area
Next up is Wernicke’s Area, which is located in the temporal lobe of the brain. The easiest way to describe where the temporal lobe is is to say that it’s beside your ears. Yes, you have two of them, one on each side.
Interestingly, Wernicke’s area is connected to Broca’s Area through neural pathways.
This area is actually located at the back of the temporal lobe and is important in how you process and comprehend language, whether written or spoken.
When Wernicke’s Area is damaged, the result is Wernicke’s aphasia, which is a fancy word for having trouble communicating.
People with Wernicke’s Aphasia have the ability to express themselves with language, but much greater difficulty understanding what they hear or see. For this reason, it’s also often called Receptive Aphasia.
The Angular Gyrus
This part of the brain lies between several other areas - the occipital lobe, the parietal lobe, and the temporal lobe, and sits across both hemispheres of the brain.
The Angular Gyrus is responsible for several language-related things:
Language processing - how we comprehend language
Number processing - the ability to calculate mathematically and understand numerical concepts
Spacial attention - focusing on particular areas in space
Memory retrieval - retrieving memories from different sources and integrating them
Self-awareness - how you recognize and orient your own body and spacial orientation
People who have damage to the Angular Gyrus often experience a few unique challenges:
Gerstmann’s Syndrome - difficulty knowing right from left (in it’s most basic description)
Alexia - an inability to read
Agraphia - an inability to write or difficulty writing (“a” in medical terms usually means it’s missing)
Dyscalculia - difficulty doing mathematics
Spacial neglect - ignoring or not attending to stimuli on one side of the body
How are Speech and Language Affected by Dementia?
I should preface this by saying that every single person with dementia is different. Each person will experience vast differences in how their language is affected, so don’t take what you read here as hard and fast rules.
You’ve read the science behind how speech and language are affected, but what’s the real-world application?
At Our House
For my father, by the time he passed, he was down to what we guessed to be roughly ten sentences:
Do they have a ticket? (relates to visitors)
She’s a puppy
There’s a puppy in here
How are you today, Darlin’?
I think I’ll go outside
What’s for spupper (his fun way of saying supper)
Did Pat and Vanna retire? (on endless repeat)
Yeah, I play pickleball, but I haven’t played in a couple of weeks (or since COVID)
To my brother, a college professor, he would always ask/say:
How many students do you have (usually 180-240), so this was followed by
180 huh? That’s a lot
How many classes are you teaching this semester?
I should come sit in on one of your classes
You could talk to him and have a conversation. In the last year or so, he spent a lot of time talking about his childhood. He was born in 1938, so he remembers WWII from a child’s perspective.
He would tell us stories about how he and a buddy would find a big log and they’d float down the Little Miami River (near Dayton, OH), then walk back home after. He would share how he would pick berries for pennies for local farmers as well.
He grew up very poor, so the fact that he put himself through college and got a degree was never lost on me. I don’t know what his IQ was when he was a young man, but it was high.
Leaving Him Home Alone
Until the last few days he was home, we never had a problem leaving Dad at home alone. His arthritis in his neck and back was so bad that he couldn’t walk far, so we didn’t worry about him wandering away from home.
There did come a time when he couldn’t fix his own lunch, though, so I developed workarounds.
I bought some of those sectioned-off plastic containers at the grocery store and I would make his lunch for a few days. I’d include a sandwich and some fruit. Late in the morning, after he’d had breakfast, I’d put a note on the table that simply said, “Your lunch is in the refrigerator.” Usually next to a bag of chips.
Inside the refrigerator, I had his lunch with a note on top that was very simple - Wayne’s lunch.
I would also set out a can of zero sugar lemonade, which he thought was soda but better fit his diabetes diagnosis.
I was especially diligent about this practice after my mother had a colon resection early in 2024. She was first required to get a colonoscopy the day before and we anticipated that taking much less time than it did. I realized we weren’t going to be home in time for lunch and I was panicking that Dad would go hungry.
I finally got my oldest daughter to get him some Wendy’s. Luckily, she worked from home and didn’t have a lunchtime meeting that day. The surgery was the next day and I made sure he had lunch in the fridge.
That system worked for him up until the end, but I suspect if he hadn’t declined as quickly as he did, adjustments would have been necessary.
Are Speech and Language Difficulties More Common in Different Forms of Dementia?
The short answer is yes, and based on the anatomy you read above, you can see why. Obviously, someone with frontotemporal dementia will have a significant language impact, as will someone who has vascular dementia, but other types of dementia are impacted as well.
Alzheimer’s Disease
For patients who are in the early stages of Alzheimer’s, they may have trouble remembering names or finding the right words to say what they want to say.
As the disease progresses, the difficulty finding words will get worse, and they will have trouble even naming common objects.
This is also where you’ll find the repetitive words and phrases.
In addition, someone with later stage Alzheimer’s will struggle to follow a conversation or understand a complex sentence. They may also become difficult to understand.
I often think now that Dad may have had Alzheimer’s, but combined with another form of dementia. During his last five weeks, it was like he was talking with marbles in his mouth. He was barely understandable sometimes.
In the later stages of Alzheimer’s, patients will just use language less and less.
Frontotemporal Dementia
People with this type of dementia often develop something called PPA, or Primary Progressive Aphasia, which simply means an increasing difficulty with communication.
To further complicate PPA, there are three types:
Semantic Variant PPA - patients progressively lose vocabulary and have trouble understanding and using words
Nonfluent or Agrammatic Variant PPA - speech of patients is slow, labored, and effortful
Logopenic Variant PPA - difficulty finding words and repeating words or phrases
Vascular Dementia
With Vascular Dementia, a person might have difficulty understanding what someone says to them. They will often use shorter, simpler sentences, and have difficulty finding the right words.
Remember that Vascular Dementia often occurs from a lack of bloodflow, which is sometimes the result of a stroke. This is why many stroke patients have difficulty with speech after their stroke.
My grandfather - my father’s father - had a stroke and survived it, but he never was able to speak again. Now, to be fair, this was partly due to the fact that he refused speech therapy. He was able to get a word out here and there, but for the most part, he didn’t speak.
How Can You Improve Communication with Someone Who Has Dementia?
This is really the ultimate question, right? How can you communicate with someone who has dementia?
The best advice I have is to meet them where they are, not where you are. And this is so hard. Someone like my father, who raised us all to do math in our heads and was probably close to a genius, was reduced to ten or so phrases.
KISS
Keep it simple, silly.
So the first thing is to keep your sentences short and without a ton of detail. Remember that they probably cannot process all of the details anyway.
If they ask a question, of course you answer, but again, keep the answers short and to the point. This is more difficult for women than men because women tend to be more wordy.
Be Patient
It’s very challenging to speak with someone who cannot find a word they’re trying to say. I dated a man who had a TBI and it was excruciating to watch him search for words. He would look at me for help, then I would provide it but I tried very hard not to jump right in - it can feel demeaning.
Answer Like You Weren’t Just Asked
Also, most dementia patients repeat themselves. This is where my mother truly struggled with my father. I have to choke back words now when she does it.
My grandchildren were great about this. Three of my eight grandchildren visited us more often and they dealt with him very well, as did my nieces and nephew, in their teens and early twenties.
The grandkids would come over (his or mine) and he would ultimately say, “Why aren’t these kids in school?”
Over the course of an hour-long visit, he might ask this three or four times, yet with the patience of Job, these kids would give him a patient answer every single time, “Papa it’s Sunday” or “It’s summertime we don’t have school.”
And this is what you have to do - answer it like you didn’t just answer it five minutes ago. And he could tell if he was repeating himself to us, especially at dinner. He never lost his ability to read facial cues.
He’d be fine during dinner, but then when he started thinking about going upstairs to watch television, he would ultimately say, “Are Pat and Vanna retiring?” The look on our faces would tell all and he would say, “I already asked you that, right” and I would say, “No, you didn’t today.” I’m not exaggerating when I say this went on for three months.
No matter how many times they ask, you have to act like it’s the first. Sanity be damned this is what you do. Sometimes, it’s easier than others.
Give Them Tools
About three years ago, Dad was wanting to write, so I got one of the empty sketchbooks I had and gave it to him with a pencil. Some evenings, he would write little paragraphs. Rarely, he would draw a picture. That was what I actually gave it to him for.
While untapped, my father had artistic ability, which he passed on to all three of us kids.
Some patients might benefit from music, crafts, or photographs. The evening my father died, a couple of my kids and some of the grandkids were sitting in the lobby of the Memory Care facility where he’d been for just twelve days.
A woman walked up, sat down at the piano, and began playing the most beautiful piece. A short time later, her son and daughter-in-law came in and just listened. In the midst of our sorrow, her playing was incredibly touching. For her, music was familiar. I believe her family told us she’d been a concert pianist.
Creative tools are a great way to occupy their minds and help them pass the time. A lot will depend on what they did when they were younger. Unfortunately, my father had no hobbies, so for him, it was mostly games on his iPad.
Wrapping Up Conversations With Someone Who Has Dementia
The most important thing to remember when it comes to helping someone with dementia is not to allow them to become isolated.
Last Thanksgiving, I noticed that my father was sitting on the sofa at my daughter’s house all by himself. I get it. He was a challenge to talk to, but this felt cruel. I went and sat with him for a little while until I was called away to help.
This past summer, my mother decided she wanted a Minnie Mouse birthday and while she said it in jest, I pulled it off. I bought a $20 Minnie birthday kit from Amazon, which included a balloon kit, plates, and cups, and ordered a white cake with red polka dots from the local grocery store.
While she napped that afternoon, I blew up the balloons and created a total Minnie environment. I’d invited everyone over for cake and cupcakes after just the four of us (me, my brother, Mom and Dad) had dinner.
As more people arrived, Dad found his way to Mom’s chair in the living room. There were so many people there that it was hard to notice his retreat, but my ex-sister-in-law did, and bless her heart, she sat and talked to him for the entire time she was there. It meant everything to Mom and I.
Don’t allow them to become isolated. It’s easy to just let them sit there, but if it were you, would you enjoy being ignored? Just because their brain is dying doesn’t mean they don’t still have feelings!