New report highlights financial toll of Parkinson’s on individuals, care partners and the Canadian health care system
Toronto, ON—Oct 8, 2024: A new report from Parkinson Canada, The Economic Burden of Parkinson’s in Canada, outlines the staggering costs of Parkinson’s in Canada, with total costs projected to reach $4.4 billion annually by 2034. The report is based on survey responses collected from people living with Parkinson’s and their care partners, as well as Canadian health care system data.
The report found that people living with Parkinson’s, who face not only the physical and emotional challenges of the condition, also pay significant out-of-pocket costs for care, medications, assistive devices and assistance at home.
The financial strain extends to care partners too, who shoulder significant financial and personal burdens when caring for someone with Parkinson’s. Care partners also commonly need to modify their work schedules or leave their jobs entirely to provide care, and experience negative impacts on their own mental and physical well-being as they navigate the complexities of providing essential care. Changes to work life for both people with Parkinson’s and care partners can create added financial strain for the whole family.
The Canadian health care system, which is already stretched thin, is also facing challenges to provide appropriate and often extensive care to people living with Parkinson’s. As the number of people living with Parkinson’s increases in Canada, the cost of care will increase as well. The report estimates that Parkinson’s will cost the Canadian health care system $332 million in 2024, rising to $435 million annually by 2034.
“Living with Parkinson’s shouldn’t put a financial strain on your everyday life, but that’s the reality so many are facing. The cost of medication, crucial supports, home modifications and equipment, it all adds up,” says Karen Lee, Ph.D, President and CEO, Parkinson Canada. “What we hear from people with Parkinson’s and their loved ones is that tough choices have to be made all too often. If we want people with Parkinson’s to live well, they need more support. No one should have to choose between life-changing medication, food and shelter.”
Key findings from the Economic Burden of Parkinson’s in Canada report:
- In 2024, there are approximately 110,000 people living with Parkinson’s. By 2034, the number of Canadians living with Parkinson’s is expected to rise to 150,000.
- The economic burden of Parkinson’s in 2024 results in $3.3 billion annually in costs for people living with Parkinson’s, care partners, and the health care system, rising to $4.4 billion annually in 2034.
- Close to 90 per cent of the total costs of Parkinson’s – or $2.9 billion – is borne by people living with the condition and their care partners.
- People living with Parkinson’s face up to $1.4 billion in direct costs, such as out-of-pocket expenses not covered by insurance or third-party payers annually, with an additional $500 million in indirect costs, defined as productivity losses resulting in decreased income.
- Over half (53 per cent) of the people with Parkinson’s surveyed reported they had to stop working or retire earlier than anticipated.
- Of those who were working prior to becoming care partners. 72 per cent had to change their working arrangements such as switching to part-time work, taking a less demanding job, or retiring.
- Out-of-pocket expenses include high costs for care homes ($43,416 annually), nurses and support workers ($10,800), home modifications ($2,612), home assistance ($2,242), and medical equipment ($1,628).
- On average, people with Parkinson’s pay $1,479 for medications (prescription and supplements).
- Care partners are spending an estimated total of $990 million in 2024 alone in out-of-pocket expenses and respite programs.
“This report highlights the urgent need for improved support systems and funding that our community is already well aware of,” said Lee. “Parkinson’s is complex, and no two people will be dealing with it in the same way. We need policy makers to understand the financial impact of Parkinson’s on everyone – the individual, the family and the health care system, so that affordable treatments and supportive policies can be made accessible to the Parkinson’s community.”
Parkinson Canada recommends that federal, provincial and territorial governments extend coverage of crucial supports that people with Parkinson’s need to live well, including:
- Access to medicines
- Fair financial assistance and access to disability supports
- Access to health professionals
- Research funding and better data collection
- Support for care partners
Let your voice and story be heard, including how you’ve been financially impacted by life with Parkinson’s. Help us fight for change – share our calls to action with your government representatives in just a few clicks here: www.parkinsonspricetag.ca
About the report
The report is based on survey data of 1,958 people across Canada, who identify as living with Parkinson’s or as a care partner to someone living with Parkinson’s. The survey and report were conducted by PricewaterhouseCoopers on behalf of Parkinson Canada.
About Parkinson Canada
At Parkinson Canada, people with Parkinson’s are at the centre of everything we do. We empower the Parkinson’s community through tailored programs. Innovative research and raising the voice of Canadians impacted by Parkinson’s. A national registered charity, Parkinson Canada fulfills its mission through the generosity of donors.
Please visit parkinson.ca, call 1-800-565-3000 or email info@parkinson.ca in English or French for more information, to get involved or to support Canadians affected by Parkinson’s by making a donation.
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For media inquiries, please contact:
Emma Gostovic
Communications Specialist
Parkinson Canada