Names and identifying details of patients/family members have been changed to protect the privacy of individuals.
When Dr. Galit Kleiner came to Baycrest years ago as the sole Movement Disorder Neurologist, she worked treating patients who were suffering from increased involuntary muscle tone. Dr. Kleiner, who now works at Baycrest's Pamela and Paul Austin Centre for Neurology & Behavioural Supports, soon began to realize that many of her patients were not exhibiting signs of stroke-related spasticity or dystonia, but rather paratonia, a poorly understood and seldom identified condition at the time.
Paratonia, a form of pathologically increased muscle tone, is unique to individuals living with dementia. It emerges in the early stages of dementia as facilitatory paratonia, which sees patients unable to relax their muscles, and progresses to a more resistive form. Left untreated, paratonia can lead to fixed muscle contractures around a joint, causing immobility, pain, skin breakdown, infection, and fractures, severely impacting patients, caregivers, and their families.
After successfully trialling botulinum toxin A (Botox®, Dysport® or Xeomin®) – which is commonly used to treat stroke spasticity and dystonia-related muscle postures – for paratonia, Dr. Kleiner began offering this off-label treatment to eligible patients. In 2014, she and her colleagues published a study providing proof of concept for the treatment's effectiveness and safety.
There are currently an estimated 115,000 people in Canada living with advanced dementia and paratonia that would be eligible for treatment. Eventually, all people living with dementia will inevitably develop severe paratonia if they live long enough and their dementia progresses to end-stages.
While involuntary, paratonia is often misinterpreted as a refusal of care by both professional and family caregivers. It can resemble purposeful resistance and is typically intensified in response to movement and handling, which are often required to provide care. This can cause misunderstandings about a patient's willingness to cooperate, especially with those who have a limited capacity to communicate verbally.
Jane, whose husband was treated by Dr. Kleiner for paratonia with botulinum toxin A, said personal support workers often interpreted his resistance to perineal care as deliberate opposition, resulting in their applying more force in trying to separate his limbs. This caused his reflex to becoming stronger. "He would feel assaulted; they would feel irritated," Jane reflected, which amplified stress.
The botulinum toxin A injections increased his range of motion and relieved his pain. "Without the injections, I do not believe it would have been possible for me to keep him at home."
Ironically, the current standard of care for paratonia is Passive Range of Motion Therapy (PRMT), despite research confirming forceful movement of limbs results in microtears in muscles, worsening the condition.
A 2024 national survey led by Dr. Kleiner found that 87 per cent of Canadian physiatrists and neurologists reported clinical improvements when treating paratonia with botulinum toxin A. However, 96 per cent of these physicians also cited significant barriers to accessing the treatment, including lack of regulatory approval and funding pathways.
Without access to this treatment, patients like Jane's husband will prematurely require long-term care, creating unnecessary burdens for patients, families and the healthcare system.
The widespread lack of reliable access teamed with the remarkable patient improvements she witnesses daily continues to inspire Dr. Kleiner to advocate for enhanced access to exceptional care with this impactful, safe and effective treatment.
Dr. Kleiner has since dedicated her career to creating and incorporating new research, education and innovation into care delivery to develop scalable models so that access to this treatment can be expanded to support older persons locally, nationally and globally. She leads research, education and quality improvement initiatives such as developing paratonia onboarding and training materials, creating standardized screening and referral processes and producing tools to measure botulinum toxin A's impact on pain, care resistance, caregiver burden and resource utilization.
Importantly, Dr. Kleiner is working to accelerate policy changes that reform and enhance dementia care by developing an FDA-compliant clinical endpoint to validate the effectiveness of this treatment through larger clinical trials. With the support of the Centre for Aging + Brain Health Innovation (CABHI), powered by Baycrest through its Ignite program, she aims to transform her existing findings into a preliminary paratonia burden scale that will eventually capture the important effects of this transformative intervention for patients with advanced dementia.
For more information, contact Dr. Galit Kleiner at gkleiner@baycrest.org.