**
Dr. Galit Kleiner, a distinguished neurologist at the Baycrest Centre for Geriatric Health in Toronto, is shedding light on a movement disorder profoundly affecting individuals with advanced dementia. After nearly two decades of dedicated research, she has identified paratonia—a condition that causes involuntary muscle stiffness and pain, often overlooked in dementia care. Despite its prevalence, affecting roughly 25% of Canadians over the age of 85, paratonia remains largely unrecognised, with many attributing its symptoms to aggression rather than a neurological response.
Understanding Paratonia
Kleiner describes paratonia as a syndrome that elicits involuntary reflexes, complicating the lives of those it affects. Patients often display clenched fists and stiff limbs, making fundamental daily activities—such as dressing, using the bathroom, or even sharing a comforting embrace—exceedingly challenging.
“When you attempt to move the limb of someone with advanced dementia, you may witness what seems like resistance, but it’s actually a reflexive response,” Kleiner explains. This misunderstanding can lead to frustration and confusion for caregivers, who may not realise that the movement is beyond the patient’s control.
A Breakthrough Treatment
In her pursuit to alleviate the suffering associated with paratonia, Kleiner has initiated experimental trials utilising botulinum toxin (BoNT-A), commonly known as Botox. Historically used to treat various neurological and muscular disorders, this treatment has shown promising results for those suffering from paratonia.
Since beginning her work at Baycrest in 2008, Kleiner has witnessed remarkable transformations in her patients. “One by one, they returned to me with relaxed hands and a newfound sense of comfort. Caregivers reported a significant decrease in pain,” she recalls.
One notable success story involves Giovanni Greco, an 89-year-old resident at Baycrest. His daughter, Rina Paniccia, expressed the profound difficulty of caring for her father, who could no longer communicate or express his distress. After being connected with Kleiner, Giovanni was deemed a candidate for the injections. The results were life-changing; Paniccia described the relief of being able to hold her father’s hand again, stating, “It brings us great relief and great joy.”
The Need for Wider Recognition and Funding
Kleiner’s findings, recently published in the Journal of the American Medical Directors Association, highlight the necessity of recognising paratonia as a significant complication in dementia care. Her research has the potential to shift perceptions and treatment practices, transforming paratonia from a neglected condition into one that is actively managed.
Despite the encouraging outcomes, Kleiner faces challenges in securing funding for larger trials, which are essential for broader implementation of the treatment. Currently, the annual cost of the injections is approximately £9,500, and they are not covered by provincial health plans, as Health Canada has yet to approve botulinum toxin specifically for paratonia.
Paniccia remains optimistic about the future. “If this treatment becomes more widely available, it could keep many patients out of hospitals and enhance their quality of life,” she asserts.
The Growing Dementia Crisis
As Canada’s population ages, the urgency to address conditions like paratonia is more critical than ever. Currently, around 772,000 Canadians live with dementia, a number projected to reach one million by 2030, according to the Alzheimer Society of Canada. Kleiner emphasises the need for a comprehensive understanding of paratonia, stating, “I see the suffering my patients endure, and the possibility of reducing that suffering motivates me to keep going.”
Why it Matters
The implications of Dr. Kleiner’s work extend far beyond individual cases; they resonate within the broader context of dementia care in Canada. As awareness grows and treatments become accessible, families could experience a significant reduction in the emotional and physical burden associated with caring for loved ones with advanced dementia. By shedding light on paratonia and advocating for necessary policy changes, Kleiner’s research not only aims to improve patient outcomes but also seeks to restore dignity to those affected by this often-misunderstood condition.