Alzheimer’s disease, cerebral palsy, epilepsy, multiple sclerosis, and Parkinson’s disease are a few of the more than 1,000 identified brain conditions. Brain conditions affect individuals of all ages, and estimates suggest more than one in three Canadians live with at least one of these conditions. Brain conditions are the leading cause of disability in Canada and can place significant demands on family, friends, and caregivers. Most worsen over time, and while research is making progress and treatments are available for a growing number of brain conditions, the majority of conditions still have no known cause or cure.

Collaborating for a cause

Until now, very little information was available on the scope of brain conditions in Canada as well as the impact and cost of these conditions on individual Canadians, families, health care systems,  and society. The Government of Canada and Neurological Health Charities Canada (NHCC), a coalition of 24 health charities representing the voice of individuals and families impacted by brain conditions, agreed to work together to improve the Canadian understanding of brain conditions. From 2009-2013, with a $15 million investment from the Government of Canada, the National Population Health Study of Neurological Conditions became the largest and most comprehensive study of brain conditions ever conducted in Canada.

The study involved 130 researchers and 177,000 Canadians affected by brain conditions, marking an unprecedented level of collaboration within the brain community. In September 2014, the Government of Canada and the broader brain community celebrated the conclusion of this landmark study when Canadian Minister of Health Rona Ambrose released the study report, Mapping Connections: An understanding of neurological conditions in Canada.

"This is an important base of information needed by governments, health charities, healthcare providers, and communities to ultimately help improve the lives of individuals living with their conditions, their families, and caregivers.”

In unveiling the report, Minister Ambrose said, “This is an important base of information needed by governments, health charities, healthcare providers, and communities to ultimately help improve the lives of individuals living with their conditions, their families, and caregivers.”

Mapping connections

Key findings included: individuals living with a brain condition share many of the same functional impacts and needs, regardless of diagnosis. Canadians living with a brain condition typically use more health care services than those without a brain condition, or even those with other chronic conditions.

Mental health conditions, such as depression and mood and anxiety disorders, are more than twice as common among people with brain conditions than the general population. Caregivers supporting people with a brain condition are twice as likely to report distress compared to other caregivers.

Bringing research to action

As Canada’s population grows and ages, more people will be living with brain conditions and experiencing severe disability.  Within the next 15 years, in the population over the age of 65, there will be at least twice as many people living with Alzheimer’s disease and other dementias, cerebral palsy, epilepsy, multiple sclerosis, Parkinson’s disease, spinal cord injury, and traumatic brain injury.

The new evidence generated by the study, combined with a general increase in awareness, will enable governments and other key stakeholders to take action to reduce the impact of brain conditions in Canada. This includes addressing remaining knowledge gaps, transforming policy and programming, and supporting the uptake of successful innovations.

Let’s build on the study together and move research to action. Help us by joining the Canadian brain community.