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Toronto neurologist Dr. Galit Kleiner has spent nearly two decades studying a movement disorder that causes uncontrollable muscle stiffness and pain in nearly all of her patients with advanced dementia.
Despite how common it appears to be, she says the condition and new possibilities for treatment have gone largely unrecognized.
“It’s been a very difficult climb,” said the movement disorder specialist at Baycrest Centre for Geriatric Health. “There’s been a kind of inertia and nihilism around this population, where suffering is seen as almost inevitable and expected.”
Kleiner is fighting to change that, by raising awareness about paratonia which is often mistaken for aggression in dementia patients. She’s also at the forefront of groundbreaking research, and experimental treatment offering hope to families.
Paratonia triggers involuntary muscle reflexes in people with dementia, a syndrome that affects roughly a quarter of Canadians over the age of 85. Paratonia can lead to loss of mobility, infections, and make even simple expressions of affection, like holding hands, agonizingly difficult.
“It can appear as though patients are actively resisting attempts to move their limbs, when in fact it’s a reflex and they have no voluntary control over it,” Kleiner said.
Paratonia often presents as clenched fists or buckled knees, making everyday tasks such as dressing, going to the bathroom, or even embracing extremely challenging. When a limb is touched, it may respond in the opposite way, attempting to open a closed hand can cause it to tighten further.
“If you’re familiar with Newton’s third law of motion, for every action, there is an equal and opposite reaction. That’s what happens when you try to passively move the limb of a person with advanced dementia,” Kleiner explained.
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Because these movements are often interpreted as resistance to care, paratonia is frequently underdiagnosed, leaving caregivers and families confused and frustrated, she added.
But a drug that has been used safely for decades may help change that.
Botulinum toxin (BoNT-A), commonly known by the brand name Botox, is already part of standard care after stroke and other neurological and muscular conditions.
When Kleiner began working at Baycrest in 2008, she suspected it might also be able to relieve paratonia and launched experimental trials at the facility.
“One patient after the other came back to me a couple of weeks later,” she said. “Suddenly their hands were relaxed, their elbows were relaxed, and caregivers were saying they weren’t experiencing pain anymore.”
The treatment proved life-changing for Rina Paniccia’s 89-year-old father, Giovanni Greco, a resident at Baycrest’s long-term care home. With her father no longer able to communicate, looking after him became “a guessing game,” compounded by constant worry about sores and infections.
“It was very difficult for us to bathe him, to do daily care, putting a diaper on, putting clothes on him,” Paniccia said.
Even though her father could not express himself, it was clear he was suffering.
“He’s not mobile, and not cognizant, somehow [advanced dementia patients] always show pain,” said Paniccia. “That’s when we asked for help.”
Baycrest connected her with Kleiner who determined Greco was eligible for the injections.
Since then, his pain and agitation have eased, allowing Paniccia and her mother to better care for him and reconnect physically.
“We can go and lift his arm and grab his hand,” she said. “It brings us great relief and great joy.”
He is one of more than 100 patients this experimental therapy has helped, says Kleiner.
Her findings were published Monday in the Journal of the American Medical Directors Association, outlining how the treatment could possibly move this “poorly recognized complication to a routinely and proactively managed condition.”
While paratonia is often overlooked in dementia care and sometimes dismissed as a normal part of the the disease, Kleiner’s work is beginning to draw wider attention.
Dr. Paul Katz, a prominent voice in seniors’ care, former head of geriatrics at Florida State University and previous vice-president of medical services at Baycrest Health Centre, called Kleiner’s research an “aha moment.”
“I have seen the manifestations of paratonia for as long as I have been practicing,” he wrote in an accompanying editorial, “but until now never truly understood its underlying pathophysiology, clinical consequences, or treatment options.”
Why dementia treatment is often out of reach
Despite the promising results, Kleiner says larger trials are needed.
She has not yet been able to secure funding for wider studies, leaving the treatment out of reach for most Canadians. At roughly $12,000 a year, the injections are not covered by provincial health plans since botulinum toxin is not approved by Health Canada for paratonia.
Paniccia hopes that will eventually shift.
“I think it would go a long way toward keeping people out of hospitals and doctors’ offices and living better lives, happier patients and happier caregivers.”
An estimated 772,000 people in Canada are living with dementia, a number projected to reach one million by 2030, according to the Alzheimer Society of Canada.
As Canada’s population ages, Kleiner says there is an urgent need to better understand, track and treat paratonia.
“I see the suffering my patients endure and the possibility of reducing that suffering and restoring dignity,” she said. “That’s what motivates me to keep going.”
