This month’s story reminds us of the importance of paying attention to the person behind the dementia as an invaluable tool for clinical management.
For individuals living with symptoms of dementia, changes in behaviour are often automatically attributed to dementia progression. But sometimes, what we are seeing is not the disease itself. Sometimes, it is the body responding to pain, medication, discomfort, or an unmet need.
At times, the difference between decline and recovery is simply whether someone notices that the person is not quite themselves.
The Shirley Everyone Knew
“Shirley” was known throughout the care home for her vibrant spirit.
She loved to sing. She joked with staff and residents. She carried a warmth and positivity that naturally drew people in. Even on difficult days, Shirley often found ways to laugh, connect, and brighten the environment around her. This was Shirley’s “baseline.”
Managing Shirley’s Chronic Pain
The people around Shirley knew her as animated, expressive, playful, and socially engaged, but Shirley also lived with chronic pain. Managing that pain had become an important part of her care.
Unfortunately, the medications helping her pain were also contributing to severe constipation, creating another layer of discomfort and distress.
Like many care teams trying to balance quality of life with symptom management, the healthcare team decided to trial a different medication. The hope was that it would continue managing Shirley’s pain while reducing the constipation she had been experiencing.
At first, it seemed successful. Her pain appeared calmer, and the constipation eased.
But within the first two weeks Shirley was on this new medication, the people around her began noticing a change in her baseline.
A Change in Shirley’s Spirit
Shirley no longer seemed like herself. The woman who once sang and joked now appeared subdued and withdrawn. She looked drained and disengaged.
Her speech became slurred. She dragged her feet when walking.
Staff described her as “dopey” and unusually flat in her expression and interactions.
Naturally, concerns began to grow.
Some wondered if Shirley’s dementia had suddenly progressed. Others questioned whether this marked the beginning of a significant cognitive decline. After all, dementia is progressive.
But something about the change felt different. The shift had happened quickly… and that detail matters.
When Behaviour Changes Suddenly
One of the most important distinctions caregivers must understand is the difference between dementia and delirium – and, just as importantly, that delirium can occur in a person already living with dementia, making it even more challenging to recognize and diagnose.
A progressive type of dementia typically has a gradual progression. Changes often unfold slowly over months or years.
Delirium, however, appears suddenly and is almost always a medical emergency requiring immediate attention.
It can develop over hours or days and is often triggered by an underlying medical issue such as infection, dehydration, pain, metabolic imbalance, surgery, or, in Shirley’s case, medication changes.
The care team recognized that the new medication itself could potentially cause the mood and behavioural changes they were seeing in Shirley: sedation, slurred speech, flat affect, feet dragging, and lack of social engagement.
They reassessed the situation. It resulted in the best outcome for Shirley.
Seeing the Person Hidden Behind the Symptoms
The care team decided to reduce Shirley’s new medication dosage to only once a day to see whether it would make a difference.
It did. Slowly, Shirley began returning to herself.
Her speech improved.
Her movements became steadier.
Her personality re-emerged.
The singing, humour, and warmth returned.
The goal was Shirley’s quality of life.
Providing quality of life means more than keeping the body medically stable.
It also means:
Maintaining dignity.
Protecting identity.
Preserving personality.
Safeguarding connection.
Supporting joy and laughter.
Upholding purpose.
Beyond Treating the Body – Upholding the Person Within
If caregiving were only about treating physical symptoms, the work would be simpler. But person-centred dementia care asks us to look deeper than symptom management alone.
What happens when the treatment silences the very essence of the person?
What happens when the vibrant woman who once brought laughter and connection to those around her becomes chemically subdued?
What does “successful treatment” mean if the person feels less like themselves?
Shirley was not simply a body requiring management. She was a person with a spirit that mattered.
Her positivity affected the emotional atmosphere of the home. Her singing brought comfort and lightness to others. Her humour created moments of human connection that cannot be measured on a medical chart.
Why Knowing the Person Matters
Shirley’s story highlights the critical role of everyone in the circle of care.
This is why communication between families and healthcare professionals is so essential in dementia care.
Through these Meaning Behind the Behaviour stories, we hope to remind caregivers that behaviours do not happen “for no reason.”
Shirley’s story challenges all of us to remain observant, collaborative, and deeply curious. To never stop asking “why?”
This is because person-centred care is not simply about keeping someone alive. It is about ensuring the person behind the dementia still has the opportunity to emerge and continue living with meaning and purpose.
Shirley brought smiles, joy, and laughter to what could otherwise be a hectic and stressful environment. That was part of her purpose, and it mattered.
When we care for people living with dementia, our responsibility is not only to prolong life, but to protect the quality, meaning, and humanity within it.
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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.
