By Kari Baker, CDP | High Country Senior Advisors | Flagstaff, Arizona
There is a principle at the heart of everything I do in dementia care. It sounds simple. It is not.
Behavior is communication.
When a person with dementia becomes agitated, withdraws, refuses care, cries without apparent reason, or says something that makes no sense — they are not being difficult. They are not broken. They are telling you something. In the only language they have left.
Your job — and mine — is to learn how to listen.
My grandmother taught me this before I had words for it
I have spent a lot of time lately reflecting on my grandmother Verlon. She had Alzheimer's. And I remember days when she was sad — visibly, unmistakably sad — and I had no idea why.
My instinct, almost always, was to try to cheer her up. To redirect, to brighten, to fill the space with something lighter. Sometimes that worked. Sometimes it made things worse. On the days I got it most right, I did not do anything at all. I just sat with her. I rubbed lotion into her arms, slowly, without agenda. I did not try to fix the sadness. I just let her know she was not in it alone.
I did not understand then what I understand now. The sadness was communication. It was not a problem to be solved. It was an experience to be witnessed. She was telling me something — that she was grieving, or frightened, or simply tired — and the most healing thing I could offer was not cheerfulness. It was presence.
I did not learn that from a textbook. I learned it from sitting with her.
David — and the impossible distance between clarity and terror
I spent hours today with a man I'll call David. He has Lewy body dementia, and if you have never witnessed Lewy body up close, nothing I say will quite prepare you for it.
In one moment, he was completely lucid. Present, thoughtful, articulate — the full person, right there in the room with me. We had a real conversation. I saw him.
And then, in what felt like seconds, he was somewhere else entirely. He told me there were evil forces at work. His eyes changed. The fear was physical — you could see it in his body before he found the words for it. And then, just as suddenly, he came back. Clear again. Tired, but clear.
I sat with him through several of those swings today. Each time he surfaced from the confusion, I watched him try to make sense of what had just happened — and fail. Because Lewy body doesn't give you the continuity to understand your own experience. You simply arrive, again and again, in a reality you do not fully recognize, surrounded by people whose faces you may or may not know.
The paranoia, the fear, the anger — none of it is irrational given what his brain is doing to him. Every bit of it is communication. I am terrified. I do not know where I am. Something is very wrong and I cannot name it.
The caregiving response to that — the only response that actually helps — is not to argue with the content. It is to respond to the emotion underneath it. You are safe. I am here. I am not going to hurt you.
A woman with no words at all
Earlier this week I was volunteering and I met a woman who was completely nonverbal. She could not tell me what she wanted or needed. She could not point. She could not nod with any consistency.
But she wanted something. I could see it.
I watched her for a while. I watched her eyes track the activity happening across the room — other residents engaged, moving, participating. I watched something shift in her face when she looked at them. Not frustration exactly. Something quieter than that. Longing, maybe.
She wanted to be part of what was happening. Not in the same way, not at the same pace — but present in it. Included.
Once I understood that, I could give it to her. Not by doing anything elaborate. Just by bringing the activity to where she was. By making sure she was facing the room. By acknowledging her with my eyes every few minutes so she knew she was seen.
It took intense concentration to get there. It would have been easy to assume she was simply content, or unaware, or somewhere unreachable. She was none of those things. She was fully present — and she was asking, in the only way she could, not to be left behind.
What it actually feels like — from the inside
I facilitate an experience called "In Their Shoes" a Virtual Dementia Experience. Participants wear equipment that simulates the sensory and cognitive disruptions of dementia — impaired vision, hearing loss, reduced dexterity, cognitive overload — and are asked to complete simple tasks.
I have done the experience myself. And I want to tell you what happened.
I stood in the room and I felt a wave of anxiety so immediate and so physical that I started to cry. Not because anything painful had happened. Because I could not make sense of what was in front of me. Because the instructions I had just been given had already dissolved. Because the room that should have been familiar felt suddenly hostile and strange.
I cried. Standing there, in a room full of people, I cried — and I could not have told you why.
Now imagine that is not seven minutes. Imagine that is every day.
When I stand in the room as an observer, I watch people without dementia — intelligent, capable, compassionate people — completely transform. I have watched them talk to themselves, not realizing they are doing it. I have watched them follow other participants around the room like children looking for an adult to make sense of things. I have watched them hoard objects, clutching them with both hands as if their safety depended on it. I have watched them sit completely still, doing and saying absolutely nothing — frozen. And I have watched them curse, loudly and without self-consciousness, because the frustration had simply exceeded what they could contain.
And when I debrief them afterward — every time, without exception — they describe the same experience.
Scared. Vulnerable. Stupid. Angry. Frustrated. Embarrassed.
Those are not the words of people who were mildly inconvenienced. Those are the words of people who were, for seven minutes, genuinely frightened. People who could not perform the simplest tasks and felt ashamed of it. People who needed help and did not know how to ask.
Now hear this: the person in your care feels some version of that. Every day.
What this means for you as a caregiver
When your loved one refuses to bathe — they are not being stubborn. They may be cold, or frightened, or in pain, or simply unable to process what you are asking of them.
When they ask you the same question for the fifteenth time — they are not doing it to frustrate you. The question is gone from their memory the moment they ask it. The anxiety that generated the question is not.
When they say something that isn't true, or accuse you of something you didn't do, or insist on something that cannot be — they are not lying. They are living in a reality their brain has constructed, and it is as real to them as this page is to you.
The behavior is always telling you something. Your job is to stop trying to correct the message and start trying to understand it.
That is hard. It is one of the hardest things caregiving asks of you. And it is a skill — which means it can be learned, practiced, and improved.
You do not have to figure it out alone.
If you are caring for someone with dementia and you feel like you are constantly reacting without understanding — that is exactly what I help with. Remote coaching is available by phone or video, anywhere in Arizona and beyond. First conversation is always free.
Call or text: 480.789.1058
Email: kari.baker@highcountryseniors.com
Web: highcountryseniors.com
