Thoughts from a Dementia Champion
For several weeks earlier this year, I experienced something that profoundly changed how I understand cognitive change—not as a Dementia Friends presenter, but as a person living inside it.
I was awaiting effective treatment for a painful inflammatory condition that affected both shoulders. The pain itself was difficult, but what truly altered my functioning was what came next: severe sleep disruption. For nearly five weeks, I slept less than five hours per night, and that sleep was fragmented. Each time I moved, the pain woke me. On many nights, this happened dozens of times.
The result was not simply fatigue. It was confusion, disorientation and short-term memory problems that were deeply frightening. I was aware that something was wrong, but I could not stop it from happening.
During that time, I often found myself thinking about the people we serve and advocate for through Dementia Friends. For the first time, I was not imagining what cognitive change might feel like—I was living inside something that, in some ways, resembled it.
Several moments remain vivid.
Some mornings I would sit in a chair and stare at the television or the wall. It was not that I wanted to do nothing—it was that I could not think of what else to do. The ability to generate options, something I had always taken for granted, simply wasn’t there.
One day while doing laundry, I noticed stains on a sweater. I clearly understood my choices: wash it again immediately, treat it and set it aside or wait and remember to treat it later. I knew this was a simple decision. Yet I could not make it. I stood holding the sweater, unable to act. Only when I found another garment that also needed special treatment did I manage to move forward by combining the two tasks.
It also became common for me to lose my train of thought mid-sentence, repeat information without realizing it, or ask the same question more than once. What struck me most was that I could often tell something had gone wrong not from what was said, but from the other person’s face—a fleeting micro-expression: a slight tightening around the eyes, a quick glance away, a momentary look of sadness. Those brief reactions felt intensely isolating.
One experience stays with me particularly. After picking up our car from the service center, I drove home, pulled into the garage and turned off the engine. Then I sat there unable to figure out what to do next. The next step, something entirely routine, simply would not come to mind. After several minutes, and considerable effort, I was finally able to exit the car and go inside.
With treatment and restored sleep, these cognitive changes gradually disappeared. My thinking is now clear again. I am deeply grateful for that. But this experience left me changed in important ways.
I learned how fragile cognition can be—how quickly pain, exhaustion or illness can alter the way we process, decide and respond. I learned that awareness of impairment does not lessen the fear it brings. And I learned how powerfully the smallest social cues can either increase isolation or provide reassurance.
For a brief time, I stepped into a space that so many people living with dementia navigate daily—the space of knowing something is not quite right, while still trying to participate, contribute, and remain connected. I carry that awareness with me now.
What this experience taught me as a Dementia Friends Champion
- Cognitive change can arise from many causes—and from the outside, it may look similar.
- The inability to decide or respond is not laziness or indifference; sometimes the brain simply cannot organize the next step.
- Micro-expressions matter. A calm, steady presence can reduce isolation more than we realize.
- Awareness of change does not protect someone from fear. Compassion must accompany understanding.
Most of all, I was reminded that the heart of our work is not information—it is empathy. Sometimes empathy deepens when we are given even a brief window into vulnerability ourselves.