Thank you, Madam Chair and members of the health committee, for the opportunity to speak to you today about three key points. The first is integrated care, which includes specialist and primary care access for people with Parkinson's. The second is caregiver support. And the third is public and professional awareness.
Parkinson Society Canada has ten regional partners, covering every province and territory, and 235 community-based support groups from coast to coast. We are the leading voice for people living with Parkinson's in this country. We provide innovative leadership, information, and resources to Canadians, policy-makers, industry, health care professionals, and the media.
Today, as you know, 100,000 Canadians live with Parkinson's disease, and this number is forecast to double by 2030. It is the second most common neuro-degenerative disease, and its prevalence continues to grow as the population ages. Parkinson's is a progressive, chronic disease. The cause remains unknown, and there is no cure. It affects all aspects of daily life.
The average age of onset is 60, although more than one in 10 people are diagnosed before the age of 50. Parkinson's is more prevalent in men than in women and affects people of all ethnicities.
Parkinson's is not just a disease of the elderly, and it is not a natural part of aging. It affects adults across a wide range of ages when they are busy building careers and raising families, as you've just heard from David. Thousands of Canadians have been forced into unplanned early retirement, and many face the harsh reality of poverty as an added consequence of this disease.
Most people think of Parkinson's as a movement disorder. As David mentioned, it's a complex brain disorder that includes non-motor symptoms, such as depression and cognitive impairment. Unfortunately, the non-motor aspects of Parkinson's disease are often under-recognized and poorly treated.
Studies have shown that over 50% of people with Parkinson's will experience some form of cognitive decline. The motor symptoms that most people associate with Parkinson's include shaking, slowness of movement, impaired balance, and rigidity, but it's much more than that.
As you've heard from David, and you would hear from most people who have Parkinson's, the disease affects every system in their bodies and every aspect of their lives. For example, soft speech becomes a challenge in day-to-day communication, and reduced facial expression impacts how other people view a person with Parkinson's. Both motor and non-motor symptoms of the disease bring on hospitalization, which results in an increase in health care utilization and the escalation of economic burden.
Many people who require such care are not being referred to the relevant specialist, and our primary care professionals need more information on how best to handle appropriate treatment options as they work together with a specialist.
We need health care policies at early diagnosis, and cost-effective treatments that slow the progression of Parkinson's disease and reduce the symptoms. This could result in improvements in productivity of the working-age population, decrease the need for caregiving, improve the quality of life for people living with Parkinson's, and reduce the economic burden on our health care system.
We must also ensure that caregivers are supported. Caregivers, as you know and have heard from David, are often spouses or family members who contribute many unpaid hours of support, saving the health care system millions of dollars. Policies such as respite, tax credits, and employment insurance benefits for caregiver leave must be put in place to ensure that caregivers receive the support they need to continue their efforts. This would be very helpful in alleviating their financial burden, particularly as many must leave their employment for short periods of time. Some are eventually forced to become full-time caregivers and often provide support to the detriment of their own personal health and financial well-being. More must be done to prioritize and address the needs of this invaluable volunteer workforce.
There is also an incredible need for sustainable public awareness and education programs to reduce societal stigma and build better understanding of the brain and neurological conditions among both the Canadian public and health care professionals.
Several studies have demonstrated that depression and anxiety, key Parkinson's non-motor symptoms, are associated with stigma. For people with Parkinson's, stigma and discrimination often result from a lack of public and professional awareness of the disease. Canadians with Parkinson's tell us that their lives would be significantly improved if people in their communities understood more about Parkinson's and brain disease overall.
To conclude my portion of our presentation, because Dr. Fon will speak next, Parkinson's Society Canada gratefully acknowledges the work of this committee and the individual interest and dedication each of you has shown to this cause.
We believe the brain must be positioned as one of Canada's social, economic, and health priorities. We sincerely hope that, through this committee, work will begin to develop a national brain strategy—it has begun with this work—that will address the need for income security measures, genetic fairness, prevention, investment in neuroscience research, integrated care, and public education to reduce the social and economic burdens of neurological conditions in Canada.
We would also like to thank the Government of Canada for its investment in and commitment to the national population health study of neurological conditions. This study will provide crucial information on the incidence, prevalence, risk, health service utilization, and impact of Parkinson's disease, as well as many other neurological conditions in Canada. We ask the members of this committee to continue supporting this important work and also ask that neurological conditions be added to the Canadian chronic disease surveillance system.
We have a tremendous opportunity to work together in a collaborative way to develop plans to address the needs of millions of Canadians with neurological conditions, including Parkinson's. It is exactly this thinking that brought 25 charities together to form Neurological Health Charities Canada, and it is this thinking that we need our elected representatives and public servants to employ when developing policy and making investments. We must do a better job of supporting people living with neurological conditions at every age and every stage of life.
Dr. Fon will now provide an overview in terms of what the Parkinson program is doing in research.