nly a few years ago, experts believed it was impossible to create new brain cells but we now know it happens every time we exercise. We thought a damaged brain could not be repaired; yet new findings about brain plasticity are published regularly. There has never been more excitement and more momentum around brain science – how does it work, what can it do, and what happens when something goes wrong?
The correlation between a healthy brain and the potential for a productive, high quality life experience is clear. A healthy brain can learn, think, organize and store ideas, remember, be strategic, make decisions and multi-task. It can feel a range of emotions, express itself and be intuitive. It controls a person’s ability to move at will, walk, talk, breathe, swallow and sleep.
When something goes wrong in this ‘control centre’, it can be devastating because it can affect so many aspects of an individual’s life. There can be physical, cognitive and emotional challenges, often compounded by stigma and social isolation. Understanding this complex experience, and its impact on individuals, families and communities, is the objective of Canada’s first-ever national study of neurological conditions.
“This is a very important study,” says
Dr. Paula Stewart, Director of the Public Health Agency of Canada’s Chronic
Disease Surveillance Unit. “It is about people living with neurological conditions –understanding their experience so that, collectively, we can better meet their needs.”
Building understanding
Traditionally thought of as isolated disorders, conditions like ALS, MS, Huntington’s disease, Parkinson's, brain
injury, epilepsy, and cerebral palsy affect small numbers of Canadians relative to other disease priorities like diabetes, cancer and cardiovascular disease. But, when considered as a single category of brain conditions, three observations emerge:
1 Brain conditions (neurological and psychiatric) affect one-third of the Canadian population (NeuroScience Canada, 2006).
2 Brain conditions are not curable.
3 Brain conditions result in a high degree of disability – accounting for more impact to society than cancer and cardiovascular disease combined (World Health Organization, 2006).
With one in three Canadians affected (roughly 11 million people), brain conditions play an important role in the health, social and economic well-being of Canada. Ensuring that people can access what they need, when they need it, to live the best quality and most productive lives possible, is a pressing priority.
Over the next three years, the National Population Health Study of Neurological Conditions will gather data about the incidence and prevalence of brain
conditions in Canada, the impact on individuals and families, health and community service needs, risk
factors and co-existing conditions.
| When something goes wrong in this ‘control centre’, it can be devastating because it can affect so many aspects of an individual’s life. |
Research teams across Canada will be working to answer key questions: surveying people living with brain conditions and caregivers, gathering and analyzing data, establishing new surveillance methods, and studying the landscape of best practices for health and community services.
Shifting culture
Ultimately, the goal is a better quality of life for people living with brain conditions, and their families, until such time as a cure or more effective treatments are found. But quality of life is more than a health issue. Shifting society’s perception about brain disorders is paramount to people feeling included at school, in workplaces, within families, and in communities. Individuals living with brain conditions report that their lives are dramatically improved when people make an effort to understand their challenges and look for ways to be helpful. |
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“Neurological conditions are not well understood,” says Inez Jabalpurwala, CEO of NeuroScience Canada. “It is important to dispel stigma and sensitize policy makers and the public to issues facing people with neurological conditions – to better understand the serious implications for individuals and families.”
All too often a stressful situation is made worse because of a lack of understanding or misinformation. A person with Parkinson’s disease may have trouble communicating because they’ve lost control of the muscles needed for verbal and non-verbal expression. While sometimes mistaken for being under the influence of drugs or alcohol, they simply need more time to respond and a patient listener.
For someone living with Tourette Syndrome, their tics may be interpreted as attention-seeking behaviour or something to stare at or make fun of. In truth, tics are involuntary and trying not to tic is like trying not to sneeze or scratch a bad itch – it is distracting and exhausting.
Attention Deficit Disorder (ADD) is the result of an inadequate stimulation of parts of the brain that control concentration and executive function. The evidence is absolute, yet ADD is often easily dismissed as laziness or irresponsibility.
A person with dementia is fighting against a brain disease that is erasing their memory day-by-day. Someone who was once able to articulate complex ideas may now struggle to express simple needs and wants. They are experiencing confusion, frustration, and sometimes fear – they’re not ‘crazy’ and dementia is not a natural part of aging.
It’s likely that every Canadian knows someone living with a brain condition but we are reluctant to talk about it. “We really need to start talking about the brain, in all its complexity so that people fear less and understand more,” says Joyce Gordon, CEO of Parkinson Society Canada. “There is much to do. The national study is a good start…but it is just the beginning.”
Working together
Conceived by Neurological Health Charities Canada (NHCC), this four-year study is funded by the Government of Canada. It is an innovative collaboration where charities are working hand-in-hand with government to plan and execute every aspect of the study. According to Scott Dudgeon, author of Rising Tide: The Impact of Dementia on Canadian Society (2010), “There is a truly unique approach being taken with this study – the government’s funding and population-health expertise, is married with the non-profit sector’s relationships within the research community and authentic connection to people living with brain conditions.”
“This study offers real hope for Canadians living with brain conditions,” says Joyce Gordon. “It will gather real information about how many people are affected, where they are and what they need.” The study will also simulate what the future may look like in light of various interventions.
The Honourable Leona Aglukkaq, Minister of Health for Canada, spoke to the value of this information in planning to meet the needs of Canadians living with brain conditions: “Armed with this knowledge, we will be better able to help alleviate some of the burden associated with these diseases. It will allow both the government and health charities to better develop and plan their programs and services.” H&L
Shannon MacDonald, is Director of Policy and Partnerships, for the NHCC.
Shannon@mybrainmatters.ca
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