Impact on caregivers and health professionals increases as disease progresses
Parkinson Canada, the definitive voice of the Parkinson community in Canada for over 50 years, recently conducted a survey through Ipsos Public Affairs, to better understand the challenges faced by three stakeholder groups:
- Individuals diagnosed with Parkinson’s disease
- Those who personally provide care to someone living with Parkinson’s
- Health care providers and those who work with people with Parkinson’s or with care partners.
Findings confirm what Canadians living with Parkinson’s along with their caregivers and health care providers have faced for some time. Access to specialized Parkinson’s care is often not available in a timely fashion. Other health services that improve the quality of life for both patients and caregivers can be limited.
“People with Parkinson’s often suffer from complex physical and non-motor health disorders, which can affect the whole family. We know that caregivers are heavily burdened, financially and emotionally. Our mission is to help close the gap for them and build awareness of Parkinson’s disease,” says Joyce Gordon, CEO of Parkinson Canada.
Survey Highlights
- Limited access and long wait times: 2 out of 10 waited more than one year for a diagnosis; 3 in 5 came to Parkinson Canada or one of its support groups, for additional information.
- Caregivers are burdened: more than 1 in 4 caregivers have full-time jobs while taking care of a loved one; 4 in 5 are married or living with their partner.
- Mental health: 4 in 10 people surveyed with Parkinson’s report experiencing depression, anxiety, stress, and loss of confidence.
- Financial burden: 4 in 10 agree that it is difficult to pay for health care bills relating to Parkinson’s disease, like medication, exercise, physiotherapy, and specialized services such as speech therapy.
“It’s important that individuals receive a correct diagnosis as early as possible and have adequate access to ongoing specialized care. Even this care is limited and follow-up visits are too far apart,” adds Dr. David Grimes, lead author of the Canadian Guidelines on Parkinson’s Disease and Head, Division of Neurology, The Ottawa Hospital. “If the survey shows that Canadians are experiencing considerable gaps and delays to care, this hinders health care professionals from effectively recommending treatments and lifestyle changes that would help patients better manage the disease.”
This month is Parkinson Awareness Month and we share the results with governments and other stakeholders, in order to raise awareness of these gaps in care. The organization continues to advocate for improved access and reduced wait times. The organization will further share these results with the general public and donors, to seek more support.
Additional investment is needed for exceptional research, to provide programs and services for people living with Parkinson’s, and to provide educational opportunities and resources for health care professionals.
With more than 25 people newly diagnosed each day in Canada, the demand for Parkinson Canada services and those of the health care system are increasing dramatically. It is critical that new investments are made now to expand services that ensure those living with Parkinson’s and their families, can live their best life possible. And research efforts must continue to increase our knowledge, improve treatments, and ultimately find a cure for this devastating disease.
To view the entire press release, et pour de plus amples informations en français, click here.
To view a summary of the survey, visit https://www.ipsos.com/en-ca/news-polls/Parkinson-Canada-stakeholder-survey-2018
To read recent coverage from Global News Online, click here