How fear, anger, and grief shape what someone with dementia can do right now, and why naming the feeling changes your response.
A man in a long term care facility kept ending up on the floor. Staff called it falls. It was not.
He used a wheelchair and got around the unit just fine on his own. But every so often he would end up on the floor, and nothing about it looked like a normal fall. No reaching for something, no losing his balance mid transfer, no sliding out of the chair. Then a pattern showed up. It kept happening around loud noises, a slammed cabinet, a heavy door closing. And right before he went down, sometimes you would hear him yell, "Hit the deck."
He was not falling. He was taking cover. He had severe PTSD, and a sound that meant nothing to the staff around him meant something else entirely to him.
I tell caregivers this story because it is the clearest example I know of something I see missed constantly in dementia care. We treat behavior as a response to the task in front of a person, get up, get dressed, take this pill, when it is often just as much a response to what that person is feeling underneath the task. Miss the feeling, and the behavior will not make sense no matter how carefully you look at the task.
What the Emotional Spoke Actually Means
The Wheel of Function Framework™ looks at five spokes that all connect to a person's ability to function day to day: sensory, emotional, physical, cognitive, and environment. When one spoke bends, function wobbles, and the behavior you are seeing is the wheel telling you something specific.
The emotional spoke is the one caregivers most often separate out from the rest, as if feelings were a side effect of dementia rather than a driver of it. They are not separate. A brain that is already working harder to find a word, follow a sequence, or figure out what happens next does not have extra capacity left over for fear, embarrassment, or grief. Add any of those, and function changes. That is not confusion layered on top of dementia. That is emotion doing exactly what emotion does in any brain, dementia or not.
Why Fear Looks Like Resistance
Picture a familiar scene. You are helping the person you care for get ready for a shower. You reach for the bottom of her shirt. She grabs it and pulls it back down. You reassure her, it is just a shower. You reach again. She pushes your hand away.
Now stand where she is standing. Maybe the water sounds too loud. Maybe she does not remember you already told her, five minutes ago, that it was time for a shower, so this is coming out of nowhere, and now someone is reaching for her clothing. If the answer underneath is fear, pulling that shirt back down makes complete sense. And if you keep pushing, "there is nothing to be afraid of," you are responding to the task. She is responding to the fear. You are not having the same conversation.
Why Correcting the Facts Does Not Comfort the Feeling
Or the person who says he has to get home because his mother will be worried sick, and you know she died twenty years ago. Correcting him rarely comforts him. It can devastate him, because from where he stands, you just told him his mother died.
I have stopped trying to win that argument. Instead I get curious about what is underneath it. Why does he need his mother right now? I do not have to pretend she is alive to say, "you seem worried, come sit with me a minute." The facts might be wrong. The feeling is still completely real, and that distinction matters more than almost anything else in this work.
Why Anger Is Often About Control, Not Confusion
Anger is the one caregivers ask me about most. Imagine waking up and someone else runs your entire day, when you get up, what you wear, where you are allowed to walk, whether you can go outside, and you do not fully understand why any of these people get to decide that for you. It would not take long for most of us to get angry.
So when someone says "leave me alone," that is not automatically agitation. It might be the visible edge of frustration or fear. It might just be a very human need for some control over your own life. Behavior like this is rarely random, and the unmet need underneath it is usually findable if you stay curious instead of reaching straight for a fix.
How Emotion Can Also Support Function
This spoke is not only about what shuts function down. Emotion can support function just as easily. A man who spent his life fixing things will not do "therapy exercises," but he will walk down the hall to help you look at something that needs fixing. Purpose changes function. So does laughter, catching someone off guard on a day that felt unsalvageable.
This matters even when the person will not remember the specific moment. The person you care for may never be able to tell someone, "she gave me time to do my own buttons." But not remembering the details does not mean the moment did not matter. What often stays is a sense of safety around you, shoulders that do not tense quite as much the next time you walk in.
Reading the Emotion Before You Read the Behavior
Behavior is never the problem. It is always the signal, and the emotional spoke is one of the clearest places to find it. Before you try to manage or correct a hard moment, ask one question first: what might this person be feeling right now. That single shift, from responding to the task to responding to the feeling underneath it, changes what you try next.
I talk more about this, including the full story of the man in the wheelchair, in the newest episode of Navigating Dementia. Listen to episode 5 here
If you want somewhere to start tonight, pick one moment from today, the pacing, the refusal, the repeated question, and just ask which feeling it might be pointing to. You do not need the whole framework memorized to start looking at it that way. You just need to ask the question.
If today's post was helpful, the newsletter is where I go further each week, real stories, real questions, no jargon. It is free, and it is where new episodes and posts land first.
Notes
- Alzheimer's Association. (2026). Stages & behaviors. https://www.alz.org/help-support/caregiving/stages-behaviors
- Cohen-Mansfield, J., Dakheel-Ali, M., Marx, M. S., Thein, K., & Regier, N. G. (2015). Which unmet needs contribute to behavior problems in persons with advanced dementia? Psychiatry Research, 228(1), 59-64. https://doi.org/10.1016/j.psychres.2015.03.043
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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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