Someone keeps standing up during lunch. You help them sit back down. A minute later they're up again. You remind them it's time to eat. You tell them they could fall. You move their chair closer to the table. They stand up again.
If we only focus on what we can see, the goal quietly becomes keeping them in the chair. That's it. But what if they need the bathroom. What if their hip hurts in that chair. What if the dining room is too loud, or they don't recognize the food in front of them, or they've forgotten why they're sitting there at all. What if they see someone they know across the room and they're trying to follow them.
The standing up is real. The fall risk may be real too. But sitting someone back down doesn't address whatever made them get up in the first place. It just makes the moment quieter for now, until it happens again tomorrow.
Why Behavior Gets Treated Like the Whole Problem
We use the word behavior constantly in dementia care, and it's almost always attached to something we want a person to stop doing. How do I stop him from pacing. How do I get her to stop asking the same question fifteen times. How do I get him to stop trying to leave. Those are honest questions. When you've answered the same question for the fifteenth time, or you're trying to keep someone from falling, or you're already late for an appointment, you are not standing there wondering what a behavior means. You're trying to get through the moment, and sometimes you need to act fast. If someone is about to fall or step into traffic, safety comes first, full stop. Nobody pauses for a long analysis while something dangerous is happening.But once the immediate danger has passed, the work isn't finished. If we stop the behavior without ever understanding what the person needed, the same moment comes back tomorrow, and the day after that. The behavior wasn't the problem. It was the only way the message could get through.
The Question Underneath the Question
The person standing up at lunch may not be able to say, "my hip hurts in this chair," or, "there are too many people talking and I can't figure out what's happening." They may not know how to explain that they can't see the food clearly, or that they've forgotten what to do with it. So instead of the explanation, we get the response. They stand up. They push something away. They leave. They ask the same question again. They get quiet, or they raise their voice.That response is information. It's the person's brain responding to how a moment feels, not necessarily to the reality of the situation as we understand it. It's asking us to look closer, not to work harder at making it stop.
This is also where the habit worth building comes in, and it's a detective's habit, not a diagnostic one. Instead of deciding, "she's just being stubborn," the question becomes, "why is this harder for her today." Instead of, "he's doing this for attention," the question becomes, "what does he need from me right now." Instead of deciding someone can no longer do a task, the question becomes, "what changed around the task."
When Change Is Quiet
Not every signal looks like a behavior in the way we usually mean it. Sometimes the change is quiet enough to miss entirely. Someone stops finishing meals. They wear the same clothes every day and resist changing them. They stop joining conversations they used to enjoy. They sleep more than they used to. They suddenly need help with something they managed alone just last week. Those are signals too, and they deserve the same curiosity as pacing or repeated questions.Success can be a signal as well. A person becomes more engaged the moment familiar music starts playing. Someone starts moving the instant you stop explaining and simply hold out a hand. Someone who barely eats in a busy dining room finishes a full meal at a quiet table tucked away from the noise. Notice those moments too, because they tell you what's actually working, not just what isn't.
Change is communication, in both directions. That doesn't mean there's always one hidden answer waiting to be found. Sometimes several things are happening at once. Sometimes you'll try three different approaches and still not know exactly what shifted. That's real life. But the change is still a reason to pause before deciding you already know what it means.
Introducing The Signal Guide™: A Way to Think When the Tip Doesn't Work
There isn't one dementia tip that works for every person, every day, in every situation. Collecting more tips can only take you so far. What actually helps is a way to think when the tip in front of you doesn't work, a way to notice what's happening, look past the surface, try something that fits, and then pay attention to how the person responds.That's what the Wheel of Function Framework™ is for. It looks beneath what you can see. Is something sensory going on. Could it be emotional or physical. Is cognition getting in the way. Is the environment asking too much right now. Are you asking too much right now. The wheel doesn't diagnose the moment, it just points you toward a direction to try, maybe a quieter room, pain taken more seriously, fewer words and more showing, or a task broken into one small step at a time.
But even with the wheel, there will be moments you're still not sure. More than one spoke is usually involved. What worked yesterday may not work today. You'll try something, watch what happens, and sometimes need to scrap it and try something else entirely. That's not failure. That's more information.
That's exactly why the wheel couldn't be the whole system. Care partners need a way to use what the wheel is showing them, especially when the situation keeps shifting or the first thing tried doesn't land. That's how The Signal Guide™ navigation system came together. The wheel sits at the center of it. Around it is a process to return to whenever you're unsure what to do next: know the waters you're navigating, drop anchor before you act, read the signal, choose your course, look ahead, and through all of it, protect the precious cargo by keeping the person at the center of every step.
Reading the Signal Before You Read the Behavior
Behavior is never just the person. It's the message, sent the only way it could get through. Before deciding what's wrong with someone, the more useful question is what just changed, in them or around them, and what their response is telling you now that it's happened.I talk more about this, including the full lunch table story, in the newest episode of Navigating Dementia.
With all five spokes of the wheel now on the table, The Signal Guide™ is where the show is headed next, starting with the first step, knowing the waters you're actually navigating. If you don't want to miss how each piece gets built out, the newsletter is the best way to make sure it lands in front of you.
If today's behavior felt impossible to figure out, you don't have to figure it out alone. A discovery call is a chance to talk through what's actually happening in a specific moment with someone who's spent 15 years reading these signals professionally, no pressure, no obligation, just a conversation about what might help.
- Algase, D. L., Beck, C., Kolanowski, A., Whall, A., Berent, S., Richards, K., & Beattie, E. (1996). Need-driven dementia-compromised behavior: An alternative view of disruptive behavior. American Journal of Alzheimer's Disease, 11(6), 10-19. https://doi.org/10.1177/15333175960110060
- Kales, H. C., Gitlin, L. N., & Lyketsos, C. G. (2015). Assessment and management of behavioral and psychological symptoms of dementia. BMJ, 350, h369. https://doi.org/10.1136/bmj.h36
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ABOUT THE AUTHOR
Carlyn Lenfestey, PT, MPT, CDP, CADDCT, is a licensed physical therapist with 25 years of clinical experience and 15 years specializing in dementia care. She is the founder of A Better Way: Dementia Care Solutions, LLC, the creator of the Wheel of Function Framework™, and the host of the podcast, Navigating Dementia.
DISCLAIMER
The information provided in this blog is for educational purposes only and should not be considered medical advice. Always consult with a doctor or a licensed physical therapist before starting any new exercise routine, using assistive devices, or following the recommendations mentioned. Every individual's needs are different, and professional guidance is essential to ensure safety and appropriateness of care.
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