When a person living with dementia can no longer use words to express their needs, they communicate in other ways—through actions, gestures, facial expressions, and behaviours.
As caregivers, our role is not simply to respond, but to listen, to observe, and most importantly, to ask why.
Why is the person I’m caring for suddenly agitated?
Why are they unusually quiet today?
Why are they not sleeping at night?
Why are they hitting their leg repeatedly?
Every behaviour is a message waiting to be understood.
Eva’s Unusual Behaviour
This story was shared with me by “Angie,” a nurse who once worked in a long-term care (LTC) facility.
She recalled one of her clients, “Eva,” a woman in the advanced stages of dementia. Eva was non-verbal and spent most of her days seated in a Geri chair. One afternoon, Eva began repeatedly striking her right leg. The staff initially assumed this was an act of self-harm caused by her dementia.
Concerned about her safety, they restrained her to prevent further injury.
But Angie couldn’t shake the feeling that something more was going on.
The Real Reason Behind Eva’s Behaviour
With Eva restrained, the leg-hitting stopped. Still, Angie noticed something the others had missed.
Eva’s right leg appeared red, swollen, and inflamed. Drawing from her clinical experience, Angie suspected a more serious issue.
Eva was taken to the hospital, where tests confirmed a diagnosis: a blood clot in her leg.
She had been in pain, and in the only way she could, she was trying to tell them.
Once the clot was treated, the behaviour ceased. The “problem behaviour” wasn’t a symptom of dementia—it was a symptom of untreated pain.
A Powerful Reminder for Caregivers
Eva’s story is a powerful reminder that behaviours associated with dementia are not always “just part of the disease.” Dementia may impair communication, but it does not erase the person’s experience of discomfort, emotion, or need.
To say “it’s just the dementia talking” is to stop looking—and in doing so, we risk missing what the person is truly trying to tell us.
As caregivers, we must resist the urge to label and restrain. Instead, we must educate ourselves and others to recognize that behaviour is a form of communication.
There is no one-size-fits-all approach. Dementia caregiving is a dynamic, evolving journey—one that requires curiosity, compassion, and a willingness to investigate. Know that we, at Dementia Solutions, love supporting decoding dementia-related behaviours.
A Message of Hope
The more we learn, the more empowered we become. And with that knowledge comes the ability to respond with dignity and compassion.
Non-pharmacological approaches—like attentive observation, personalized care, and meaningful connection—are powerful tools. They not only uncover the causes of distress, but also preserve the person’s quality of life.
Resorting to medication or restraints without investigation may silence the behaviour—but it also silences the person.
Let Eva’s story be a call to action: to look deeper, to educate ourselves and those around us, and to always believe that behind every behaviour is meaning… in this case, a person trying to be heard.
Free 20-Minute Consultation (for NEW Clients)
If you found this article helpful and if you’re worried about a loved one or a friend and aren’t sure where to turn, you’re not alone. We’re here to help! Reach out, and together we can brainstorm solutions tailored to your unique situation. Start by visiting our website at https://dementiasolutions.ca/private-consulting/ to schedule your free 20-minute consultation with one of our experienced Dementia Care Advisors. We’re here to support you every step of the way.
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DISCLAIMER:
This article is based on a true story; however, names, locations, and certain events have been altered to protect the privacy and confidentiality of the individuals involved. Any resemblance to actual persons, living or dead, or actual events is purely coincidental.
The contents of this blog are provided for information purposes only. They are not intended to replace clinical diagnosis or medical advice from a health professional.
