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parkinson’s disease in canada: stats, impact and resources
11 minute read
more than 100,000 people in canada are living with parkinson’s, with an estimated 30 people diagnosed every day.
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parkinson’s disease is a neurodegenerative disorder that happens when brain cells that make dopamine, a chemical that coordinates movement, stop working or die. parkinson’s is called a movement disorder because it can cause tremors, stiffness, slowness, and walking and balance problems. but there are many non-movement symptoms, like constipation, swallowing difficulties, depression and memory problems, that can be part of parkinson’s as well.
the disease is lifelong and progressive, meaning symptoms slowly worsen over time at a different rate for each person. symptoms will also vary, so living with parkinson’s over a lifetime is unique to the individual. canadian actor michael j. fox has shared his own journey with the public and has been an outspoken advocate for research and support. fox was diagnosed with parkinson’s in 1991 at age 29, and his poignant story is documented in the 2023 film still: a michael j. fox movie.
other notable figures who have brought awareness to parkinson’s include legendary boxer muhammad ali and former u.s. president george w. bush.
while medications can help control symptoms and surgery may be an option, lifestyle changes like getting regular exercise, eating healthy and getting an adequate amount of sleep can help preserve function and improve quality of life.
as for the why, getting parkinson’s could simply come down to bad luck. researchers have identified specific genetic changes that can cause the disease, so you are at higher risk if someone in your family is affected by parkinson’s disease. however, according to johns hopkins medicine, experts now say the disease results from a combination of genetic and environmental factors, like exposure to toxins or pesticides in the air we breathe and the food we consume.
researchers in the u.k. have also discovered that hearing loss and epilepsy are early features of parkinson’s, calling for the need for primary care practitioners to be aware of these factors and understand how early the symptoms of parkinson’s can appear so that patients can get a timely diagnosis and doctors can act early to help manage the condition.
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as study author dr. alastair noyce of queen mary university of london notes, “people see their gps with symptoms but often don’t get a diagnosis until five to 10 years after this. tremor, for example, is one of the most recognizable symptoms of parkinson’s, but was seen ten years before eventual diagnosis in our study.”
parkinson’s disease stats in canada
while parkinson’s is on the rise worldwide, canada has the highest rates of new cases per year – which is concerning for the medical community and the public. “parkinson’s is what we call a neurodegenerative disorder in that brain cells are damaged and are dying before you’d normally lose them with age. age is the most important risk factor for parkinson’s disease and a series of other neurodegenerative disorders,” says dr. anthony lang, a neurologist and senior scientist at the university health network’s krembil brain institute in toronto, the lily safra chair in movement disorders and a professor at the university of toronto. he is a world-renowned expert in parkinson’s, the second most common neurodegenerative disorder next to alzheimer’s.
“we know and expect that as our population ages and people stay alive longer, that these age-related neurodegenerations will increase in their presence in the general population.”
but independent of the aging population, the incidence of parkinson’s disease is increasing beyond what would be expected, lang notes. “therefore, there must be other factors like environmental factors: pollution, toxins in the environment from herbicides and pesticides, and a variety of other things like that that are being researched very actively,” said dr. lang. “there are other factors in the community that people are getting exposed to. it’s likely parkinson’s is due to many causes, probably the combination of the genes you’re born with and the varied environmental factors that you were exposed to. but related to all that, parkinson’s is actually the fastest-growing neurological disorder.”
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the public health agency of canada reports statistics on parkinson’s with data from the canadian chronic disease surveillance system, the most recent covering 2000 to 2016, and released as the 2018 edition. parkinson canada, the national charity that funds research and provides education and support services, confirms the prevalence rates are growing:
- more than 100,000 people in canada are living with parkinson’s, with an estimated 30 people diagnosed every day. that number is expected to reach 50 new diagnoses per day within ten years.
- more than 11,000 canadians are diagnosed with parkinson’s each year.
- canada has one of the highest prevalence rates of parkinson’s in the world.
- canada has one of the highest rates of new cases of parkinson’s per year.
- about one in every 184 canadians over 40 lives with parkinson’s.
while you might think about parkinson’s as a disease associated with aging – the average age to develop parkinson’s is 60 – there are growing numbers of younger people diagnosed. the term young-onset parkinson’s disease, or yopd, is used to describe parkinson’s cases that occur in people younger than 40, according to parkinson canada. these cases account for five to 10 per cent of those diagnosed, and 20 per cent are under age 50. generally, the disease progresses more slowly in younger people.
parkinson canada points out that these yopd numbers may not reflect the reality of youth affected because many of the epidemiological studies tracking the prevalence of parkinson’s only account for cases in individuals aged 40-plus. so, estimates for the number of people with yopd are likely underreported.
wait times to see specialists also pose a problem, with about one in every five people in canada waiting a year or more to get a formal diagnosis after reporting their symptoms to a healthcare provider. the prolonged wait can lead to increased physical and mental health deterioration.
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in 2018, for example, the national wait time to see a movement disorder specialist (a neurologist with further training in movement disorders) was 11 months, with some regions reporting a wait time of up to two years. most of these specialists are based in major urban centres, so there are barriers to accessing care for rural canadians.
also, as noted by parkinson canada, there are no movement disorder specialists in prince edward island or any of the territories. there are also no general neurologists in the territories, so people rely on travelling neurologists who visit their area or have to travel to appointments with clinicians in other provinces.
impact of parkinson’s disease on canadian society
while there’s no cure, the goal of parkinson’s treatment is to minimize symptoms so people can carry on with daily life and work. and it’s the non-motor parkinson’s symptoms that are reported as having the most negative impact on quality of life, including changes in cognition and memory, fatigue, sleep disturbances, anxiety and depression, says parkinson canada.
as lang explains, there are a lot of non-motor features of parkinson’s that don’t respond as well to current drug therapy. “these range from what we call autonomic dysfunction, including blood pressure and bowel and bladder problems, through to behavioural difficulties, psychiatric problems, and especially cognitive disturbances. and that remains one of the biggest problems in longstanding parkinson’s is cognitive difficulties and even dementia. so, it becomes a very complicated, multifaceted disease that we need more research for and more effective treatments.”
managing this progressive disease affects employment, finances, family members and social connections. the economic burden of parkinson’s in canada is approximately $1.21 billion, and it has one of the highest direct healthcare costs annually for any neurological disorder.
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a 2018 ipsos poll conducted by parkinson canada found that many canadians living with parkinson’s pay a portion of healthcare expenses out of pocket. next to medication, exercise is the most used therapy for symptom management. the ipsos poll revealed:
- nearly 75 per cent of survey respondents pay a portion of exercise class expenses out of pocket
- about 44 per cent pay a portion of physiotherapy costs out of pocket
- almost 35 per cent pay a portion of medication expenses out of pocket.
how do you manage financially? roughly 25 to 35 per cent of people diagnosed with parkinson’s are still in the workforce in canada, with some continuing to work full or part-time for years. again, depending on your age at the time of diagnosis and what symptoms you experience, the diagnosis of parkinson’s doesn’t have to mean early retirement. that said, it might require minimizing stressful tasks and modifying others.
a collaborative report by public health agencies in canada, mapping connections: an understanding of neurological conditions in canada, looked at a number of care issues, including the impact of neurological conditions on families, especially when family members become caregivers. the report noted that care partner distress doubles when caring for someone living with a neurological condition. the distress, however, is even greater if the condition is accompanied by cognitive impairment, as is often the case with parkinson’s.
resources and support for parkinson’s disease in canada
the leading associations representing parkinson’s are:
getting informed and connecting with peers for support can be life-changing for people with parkinson’s and their families. parkinson canada has chapters and support groups across canada to offer a safe environment, both in-person and virtual, to talk about experiences and help improve a person’s ability to cope with the challenges of having parkinson’s disease.
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dancing with parkinson’s canada offers free online and in-person classes to bring the benefits of movement and social connection to people living with parkinson’s and seniors, taught by specially trained instructors. a program review in partnership with the evaluation centre for complex health interventions at the university of toronto showed that the organization’s free virtual daily dance classes are both physically and emotionally beneficial, boosting energy levels and mobility, brain health and cognition, and confidence while reducing feelings of depression.
parkinson’s foundation, based in the u.s., has a global care network to connect people to centres of excellence which have a specialized team of neurologists, movement disorder specialists, physical and occupational therapists, mental health professionals and others who work with current medications, therapies and research. each centre has to meet rigorous criteria for care, professional training, clinical research, community education and outreach. in canada, the following are designated centres of excellence:
- mcgill parkinson program
- university of calgary
- university of alberta
- pacific parkinson’s research centre, university of british columbia
- toronto western hospital movement disorders clinic at the university health network’s krembil brain institute
the future of parkinson’s disease in canada
at krembil, lang has led an international research team to propose a “radically different” way of looking at parkinson’s disease. this could lead to early detection and tailored disease-modifying therapies. because parkinson’s exists in the brain for one or two decades before people experience symptoms, research should be driven by biological determinants of the disease instead of clinical descriptions of signs and symptoms.
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he says canada has a history of punching above its weight level in research and understanding of the disease, including the role of the use of “gold standard” levodopa drug therapy, the role of other dopaminergic therapies and the role of surgical treatments. his clinic is pioneering deep brain stimulation, where a neurosurgeon implants electrodes into the brain and uses a high-frequency electric current that alters the function of the pathways in the brain to treat motor symptoms. other advances in surgery include mri-guided focused ultrasound, where the surgeon and neurologist use the focused ultrasound to burn a hole in the brain to damage an area that is identified as abnormally functioning that contributes to parkinson’s. this technique is also promising as a way to access the brain and inject gene therapy.
lang’s team builds on the growing body of research that has found biological factors that underlie parkinson’s. key factors include a build-up of the protein α-synuclein in the brain, which leads to neuron degeneration, and genetic factors that increase the risk of developing the disease. they have also begun to develop reliable methods to test for these factors, called biomarkers, in living patients.
in a recent article in lancet neurology, his team outlines a biologically-based model for classifying parkinson’s called synneurge, or s-n-g, to emphasize the interactions between three biological factors that contribute to the disease: pathologic alpha-synuclein, or α-synuclein, in the brain (s), evidence of neurodegeneration (n), and gene variants that cause or predispose a person to the disease (g). the model reflects the biological complexity and the many different ways the disease affects patients. the aim is to help researchers identify subgroups of patients with specific biological markers and distinct disease processes and develop therapies that can modify or stop the disease progression.
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“we know that these neurodegenerative diseases are related to the deposition of proteins in the brain that can be seen under the microscope with special antibody staining,” lang says, highlighting advancements in alzheimer’s research around two dominant proteins, beta-amyloid and tau. “these are normal proteins with normal functions, but we believe that with the neurodegenerations, these proteins probably acquire abnormal functions.” in the same vein, his work suggests that the normal alpha-synuclein protein in the brain acquires some toxic function that damages nerve cells.
the alzheimer’s field has seen a sea of change in their approach to the diagnosis of alzheimer’s long before signs of dementia – a change that lang and his team are proposing for research and diagnosis of parkinson’s. clinicians won’t require the motor symptoms of parkinson’s in a patient to diagnose the disease.
“say we develop a new treatment that could alter the deposition of amyloid and tau in the brain for alzheimer’s disease. if you start that once the patient shows dementia, the analogy is like closing the barn door after the horse has bolted. the disease is well established and ensconced in the brain, and it’s too late,” lang says.
now, there’s potential for a diagnostic test for parkinson’s that will be widely applicable. that also means researchers will be able to recruit patients who have a uniform classification from genetic testing for clinical trials. as lang stresses, parkinson’s is not a single disorder and needs a broader, more holistic approach to the disease.
“there will not be a single cure. there will not be a single disease-modifying therapy. it’s much like the way we deal with cancer. we’re not dealing with single diseases. when you talk about breast cancer, you talk about a condition that has different types of estrogen receptors and other kinds of receptors on the cells, different spread, and a variety of differences that account for what we lump under the global term ‘breast cancer.’ the same applies to parkinson’s disease.”
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he sees the biological classification for parkinson’s as a critical step forward:
“we’re excited,” he says, acknowledging the proposal will evolve as techniques become available. “this is the beginning of allowing us to do research that will understand the disease better and allow us to develop effective disease-modifying therapies that will be tailored in what we call a precision medicine approach individualized for specific patients.”
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