This month’s Meaning Behind the Behaviour story highlights how physical discomfort, especially when a person can no longer clearly communicate their needs, can quietly drive distress, and how attentive, compassionate observation can bring immediate relief.
This story comes from Roger and Judy, and we extend our heartfelt thanks to Roger for allowing us to share their experience, offering others insight, knowing that their story may help others better understand and offer hope through their lived story.
A Visit That Felt “Off”
Roger arrived at the long-term care home to visit his wife, Judy, who is living with Lewy Body Dementia and uses a wheelchair. As soon as he saw her, he sensed something wasn’t right.
Judy appeared unsettled. She was twisting slightly in her chair, fidgeting, and looked uncomfortable and unhappy. There was a visible restlessness in her body, but she was unable to explain what she was feeling or what was wrong.
To an untrained caregiver, this might have been dismissed as “just her dementia,” agitation, or an attempt to get out of the wheelchair. But Roger knew his wife well. He recognized this was not her usual baseline.
Rather than correcting her behaviour or trying to redirect her, Roger gently suggested they go into her room. Once there, he took a closer look at Judy’s wheelchair and how she was positioned.
It Wasn’t The Wheelchair
As Roger examined the situation more closely, he noticed something subtle but significant. Judy’s bra was twisted. The metal clips were digging into her back, and the bra was not attached properly – the cups were sitting underneath her breasts instead of supporting them.
This seemingly small issue was causing ongoing discomfort while Judy sat in her wheelchair. Unable to clearly communicate the source of her pain and discomfort, her body was doing the talking instead.
When Roger carefully adjusted and fixed Judy’s bra, Judy immediately stopped fidgeting. Immediately, her body relaxed. The discomfort disappeared. The behaviour that had raised concern simply faded away.
Understanding Behaviour as the First Response to Changed Behaviours in Dementia
This story is a powerful reminder that behaviour is communication, especially for people living with dementia who have limited ability to express pain, discomfort, or distress.
Judy was not being “difficult.”
She was not restless because of dementia alone.
She was uncomfortable.
Had this gone unnoticed for hours, Judy’s distress could have escalated into agitation. In a few hours, it could have led to skin irritation or even the early development of pressure sores – something people who use wheelchairs are particularly vulnerable to. These situations are often easily prevented when we slow down, pay attention, and take a moment to understand what the behaviour is telling us.
Let’s continue to educate ourselves. Let’s continue to share the lived experiences of people living with dementia and those who care for them. Each story, in its own right, is meaningful. The lessons they offer can bring understanding, confidence, and hope to others walking a similar path, and we build a culture of compassion that benefits everyone.
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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.
