A physical therapist's decade long search for a way to make disconnected dementia information make sense, and the framework it finally became.
Most caregivers do not have an information problem. They have a connection problem.
By the time someone reaches out for help with a person living with dementia, they have usually already read the articles, watched a few videos, and maybe sat through a workshop or two. The information exists. It is everywhere. What is usually missing is a way to hold all of it in one place and know which piece applies to the moment happening in front of them right now.
I learned this the slow way, over almost ten years, long before I ever called it the Wheel of Function Framework™. I'm Carlyn Lenfestey, PT, MPT, CDP, CADDCT, and this is the real story behind it, the one I finally told out loud in episode three of my podcast, Navigating Dementia.
A Course That Taught Function, Not Memory Loss
About ten years before I started A Better Way, I took a dementia course in Nashville. I had already taken plenty of courses by that point, but this one was different. The instructor, an occupational therapist, did not start with memory loss. For the first few hours, she talked about function instead, how dementia changes the sensory system, the emotions, physical ability, and thinking, all at once, in ways that build on each other.
I remember sitting there thinking, this makes so much sense. I believed every word of it. I understood it completely.
And then I got on a plane home and realized I could not picture how any of it actually fit together.
That is not a small distinction. I have never been someone who can memorize a list of five facts and hold onto them. I need to see how the pieces connect. Once I can see the connection, I do not have to memorize much of anything, the picture just makes sense on its own. I carried that Nashville course with me for years, treating patients, taking more courses, reading research, and every so often thinking back and realizing, oh, that is what she meant by that.
Why Good Information Was Never the Problem
For a long time, most of my work happened directly with patients. Families were part of the picture, but usually on the edges, I would answer a question here, teach a discharge skill there, and move on. It was not until I started leading workshops for families that I saw the real problem clearly.
It was not that families were not trying to learn. It was not that good information did not exist. There was plenty of good information. The problem was that it all lived in pieces. One course explained one thing. A research paper explained another. A mentor's comment would change how I understood dementia entirely, and none of it lined up with the piece before it.
The challenge was never information. It was organization. Families did not need more of it. They needed a way to connect what they already had.
The Bicycle Wheel That Almost Worked
So I started experimenting. I remember standing in front of a room one day and saying, let's think about a bicycle wheel for a minute. The person is the hub. Function is the outer rim. If one spoke bends, the whole wheel starts to wobble.
People got it immediately. I could see it landing, and I remember thinking, okay, this is working.
Then I would keep teaching, and I would get to something like person centered care, genuinely one of the most important concepts I know, and catch myself thinking, where does that fit on the wheel. Then another concept would come up that had completely changed how I understood dementia, and it would not fit either.
None of those ideas were wrong. They were some of the most useful things I had ever learned. The problem was that they sat in my head like separate tools in a toolbox. I would pull one out, use it, put it back, grab another one. There was no picture that held all of them at once.
What a Lighthouse Had to Do With It
A few years before I started my business, my therapist asked me a question I have never forgotten: where do you feel the most at peace. I did not have to think about it. The ocean. The sound of waves. A lighthouse. A boat far off in the distance.
When I chose a lighthouse as my logo later on, it was not a branding decision. It just felt right, hope, guidance, finding your way when everything feels unfamiliar.
Then one day, mid workshop, still trying to connect all those scattered ideas, I caught myself thinking, if there is a lighthouse, what exactly are we navigating. I could not let that question go. I sketched it, moved pieces around, asked myself if each idea fit, and kept rethinking it when it did not. It took a lot of conversations and a lot of teaching before it finally clicked. The Nashville course, the questions families kept asking, person centered care, the research, my own grandparents, all of it belonged in the same picture for the first time.
That picture became the Wheel of Function Framework™.
Behavior Is Never the Problem. It Is Always the Signal.
Once I had a framework instead of a pile of disconnected ideas, everything I taught got easier to hold onto, for me and for the families in the room. The Wheel of Function Framework™ looks at five spokes, emotional, sensory, physical, cognitive, and environment, all connected to the person at the center, with function as the outer rim they carry through daily life. When one spoke bends, function wobbles, and the behavior you are watching is the wheel telling you something specific.
If you want to see all five spokes at work, my six part series on the framework, through the lens of daily activities, The Best Activities For Someone With Dementia Who Won't Engageis where I go deepest.
I talk more about how this framework actually came together in episode threeof Navigating Dementia, if you would rather hear the story than read it.
You do not need more information tonight. You need a way to connect what you already have. That is what this framework is for, and it is why I built it.
If you want somewhere to start right now, pick one behavior from today, the pacing, the refusal, the repeated question, and just ask which spoke it might be pointing to: emotional, sensory, physical, cognitive, or environment. You do not need the full framework memorized to start looking at it that way. You just need to ask the question.
Want to keep figuring this out together?
Subscribe to Finding Our Way in Dementia Care and get honest stories, helpful tips, and gentle support delivered to your inbox every week. Just real talk, grounded care, and space to breathe.
Subscribe to Finding Our Way in Dementia Care and get honest stories, helpful tips, and gentle support delivered to your inbox every week. Just real talk, grounded care, and space to breathe.
Kind truth. Clear steps. Warm guide.
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.
0 Comments