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Classify Moderate to Severe Brain Injury as a Chronic Condition

The Silent Suffering of Canadians Living with Traumatic Brain Injury – National Figures Expose the Nationwide Neglect of Individuals and Their Families

A significant collaboration between Brain Injury Canada and the Canadian Traumatic Brain Injury Research Consortium (CTRC) called for moderate to severe Traumatic Brain Injury (TBI) to be officially classified as a chronic condition in Canada. This move would significantly enhance nationwide healthcare strategies, policies, and patient outcomes.

“My severe brain injury just didn’t happen to me. It happened to my whole family,” said Barb Butler, a former teacher from Regina who was seriously injured in a motor vehicle accident in 1993. “My husband suddenly didn’t have his wife, and our children didn’t have their mother. The injury never goes away, and you are never the same person you once were.”

This announcement marks a significant milestone in the recognition and proposed designation of moderate to severe TBI that impacts Canadians of all ages. Primarily caused by motor vehicle collisions in the younger population and falls among the elderly, this condition continues to be the leading cause of death and disability in children, youth, and adults under 40.

Despite the persistence of cognitive, behavioural, physical, and emotional impairments throughout a person’s life – a profile aligning with the World Health Organization’s definition of a chronic disease – the Canadian healthcare system is currently geared towards its management as a single event rather than a chronic condition. This significant gap leaves affected individuals and their families to manage brain injury’s profound, lifelong challenges without consistent and essential support.

Data in a groundbreaking position paper released today highlighted the staggering, broad societal impacts of TBI:

  • Over 50% of Canada’s homeless population report a history of TBI
  • TBI patients are 2.5 times more likely to be incarcerated
  • TBI disproportionately affects Indigenous Canadians due to poverty, inadequate housing, limited healthcare access, and inter-generational trauma
  • Among Canadian women who have survived intimate partner violence, 60% reported a TBI history
  • TBI is linked to a 50% increase in psychological distress and nearly triple the suicide attempt rate among school-aged Canadians
  • Post-TBI, the employment rate drops drastically from 75% to 13%
  • Contrary to older theories, new data links moderate to severe TBI to ongoing cognitive and neurological decline

“The emotional, physical, and financial strain of TBI are all-encompassing, spanning direct healthcare costs, lost productivity, and intensive, daily stress for individuals and their families,” said Michelle McDonald, CEO of Brain Injury Canada. “An official recognition of TBI as a chronic condition could mean a world of difference in ensuring that continuous care, support, and rehabilitation services for TBI patients are available nationwide.”

Recognizing TBI as a chronic condition within the Canadian Chronic Disease Surveillance System would allow for standardized data gathering, healthcare utilization tracking, and management research. It could also help address the disparities of care nationwide and the fragmented nature of program funding for TBI patient care.

The call to action is also an urgent response to emerging research that TBI can lead to a progressive neurodegenerative process like Alzheimer’s and Parkinson’s.

“Recognizing TBI as a chronic condition is pivotal for improving patient outcomes and tackling this public health issue,” stated Dr. Jamie Hutchison and Dr. Alexis Turgeon, Co-Chairs of the Canadian Traumatic Brain Injury Research Consortium. “This would allow us to improve our knowledge of this major health condition and help us improve outcomes for TBI by identifying more effective treatments and interventions. We believe high-quality research will significantly improve the quality of life for individuals and those who care for them, as the daily requirements of moderate to severe TBI often become more challenging over time.”

In a nation grappling with the wide-ranging effects of TBI, this initiative could spark a wave of improved healthcare strategies and policies, leading to enhanced outcomes for those suffering from moderate to severe TBI.

Click HERE to access the position paper Moderate to Severe Traumatic Brain Injury: A Lifelong Condition.

 

Press:

“The ask is simple and straightforward: Classify traumatic brain injury (TBI) as a chronic condition.”

See André Picard’s piece in the Globe and Mail about our position paper calling for the classification of moderate to severe traumatic brain injury as a chronic condition. Read the article.

 

About Brain Injury Canada

Brain Injury Canada is a national non-profit advocacy organization dedicated to enhancing the quality of life for individuals living with brain injury.

About The Canadian Traumatic Brain Injury Research Consortium

The Canadian Traumatic Brain Injury Research Consortium is a collaboration of health care professionals, researchers, and advocates aiming to improve patient care and outcomes for individuals with TBI.

www.ctrc-ccrt.ca

SAC Profile: Keith Yeates

Profile picture of Keith YeatesBrain Injury Canada’s Scientific Advisory Committee is responsible for ensuring that the content and programs we build are based on evidence-based information. One of those individuals is Dr. Keith Yeates. Dr. Yeates holds the Ronald and Irene Ward Chair in Pediatric Brain Injury, is the head of the Department of Psychology and the University of Calgary, and also serves as Adjunct Professor in the university’s Departments of Pediatrics and Clinical Neurosciences. He generously shared his perspective on working in the sector of brain injury.

What motivates you to focus your professional life on brain injury?

“I’m a neuropsychologist by training, and early in my career became interested in brain injury after working on an inpatient rehabilitation unit at a children’s hospital. I was struck by the variability in outcomes, even in children with severe injuries, and was motivated to do research to better understand the factors that explain that variability, so that we might identify interventions that could promote better outcomes.”

In what areas of brain injury care are you most interested?

“Early in my career, I spent a lot of my time doing neuropsychological assessments of children with traumatic brain injury, and also working with them and their families on the inpatient rehabilitation unit. In more recent years, I’ve provided less clinical care and been more involved in research. My work has increasingly focused on children with concussion and so-called mild traumatic brain injury, and trying to better understand why most children recover well but others have persistent problems.”

When asked if he had any messages he would like to impart to the brain injury community, he had this to say:

“I’d send two messages. One is the importance of personal hope and resilience. I’ve been continuously amazed at the successes of some of the children I’ve known with traumatic brain injuries, and I believe some of that success has stemmed from a positive attitude and sheer grit. But the other is not to be afraid to ask for help. Hope, resilience, and grit doesn’t mean you have to go it alone. Look to friends, family, and professionals to aid in the journey.”

We’re excited to keep working with Dr. Yeates in the years to come!

SAC Profile: Cameron Mang & Brain Power Hour

We are incredibly grateful to the members of our Scientific Advisory Committee for their support in developing evidence-based information for the brain injury community. They are doing great things in their respective fields – like Cameron Mang. As a practicing Kinesiologist and Certified Exercise Physiologist in the field of Neurorehabilitation, Cameron conducts research with real-world implications for people with neurological conditions. He is an assistant professor at the University of Regina, and has developed crucial links between research and community programming, fostering knowledge mobilization. Recently, he shared details of a community program Brain Power Hour.

There is a need for safe community programming for people with brain injury to address secondary impacts of the pandemic. The “Brain Power Hour” program manual will support expansion of low-cost exercise and recreation programs in Saskatchewan

After a brain injury, people experience many life changes, including losses in physical function and decreases in socialization and mental health. Rehabilitation after brain injury often ends within about three years  from the injury, and people are not always able to maintain or build on the gains made in rehabilitation, sometimes regressing. The purpose of this study was to develop an outdoor exercise and recreational walking program and study its impact on the lives of people in late stages of recovery from acquired brain injury.

The “Brain Power Hour” exercise and walking program was developed and implemented with members of the Saskatchewan Brain Injury Association (SBIA) in Regina, Saskatoon and Moosejaw in the spring and summer of 2021. Across Saskatchewan, 22 program participants consented to be involved in the study. Participants attended up to two, one-hour weekly group exercise and/or walking sessions. A researcher and program facilitator conducted interviews with participants in Regina during program delivery. Program facilitators recorded field notes describing notable experiences with the program.

Interview findings suggested that many people with acquired brain injury are not able to exercise or participate in recreation independently due to functional challenges and safety concerns. Individuals commented on the COVID-19–related disruption of therapy and community programming, which contributed to functional challenges, loneliness, and decreases in well-being. Interview responses suggested that the “Brain Power Hour” program provided a means to mitigate these negative impacts by providing physical and social benefits.

This project was made possible by the Saskatchewan Brain Injury Association (SBIA) and was funded by the University of Regina Community Engagement and Research Centre – ‘Community Research and Action Fund”. Student funding for Ms. Jeannie Postnikoff was provided by the Saskatchewan Centre for Patient-Oriented Research.

SAC Profile: Dr. Amine Choukou & The Active at Home Post-Stroke Program

Profile picture of Amine ChoukouOur Scientific Advisory Committee is comprised of professionals in the research and medical practice sectors that work to support the brain injury community. One such individual is Dr. Amine Choukou.

Dr. Choukou’s research focuses on delivering telerehabilitation services to people with chronic stroke, Parkinson’s disease, and multiple sclerosis who live in the community. Innovative technology fills in many gaps in the current practice and promises a better access to care for all, regardless of their geographic location. Receiving rehabilitation care at home is at the utmost of the needs of people living in rural and remote communities who want their physical or cognitive skills recovered or improved. Ultimately, these technologies are intended to help these individuals live independently with dignity.

“I dedicate a considerable portion of my research career to brain injury because I see people leave institutions without their needs being met, and I believe that home telerehabilitation is a smart approach to bridge that gap, while promoting autonomy and independence.”

Dr. Choukou’s efforts in telerehabilitation is demonstrated in an on-going project that is as of May 2022 in the test phase.

Active at Home Post-Stroke Program (Home PSP) is designed to provide stroke survivors with comprehensive physical and cognitive rehabilitation. The program provides semi-supervised at-home telerehabilitation to patients living in rural, remote and underserved areas who could not access rehabilitation services otherwise. The importance of remote health technology has become even more clear in light of recent COVID-19 restrictions; telerehabilitation has never been more relevant.

Home PSP delivers telerehabilitation via three easy-to-use technologies shipped to the patient’s home:

  • A mobile app
  • A virtual reality (VR) system
  • iManus

The interactive mobile app provides guided physical rehabilitation through an Android tablet. A virtual coach delivers an exercise program that includes resistance training, balance training, and stretching.

A simulated VR environment provides physical and cognitive training activities for patients to complete. With VR training, the patient benefits from continuous and safe practice, at their own pace and in the comfort of their home. The patient begins by performing simple domestic activities, and advances up to unexpected and complex situations.

iManus (www.theimanus.ca) is a patented technology developed under a partnership between the University of Manitoba and Tactile Robotics Ltd. iManus consists of a pair of sensorized gloves and therapeutic equipment for manual dexterity training. A mobile app interface collects data from the gloves and connects the patient to a therapist.

The goal of Home PSP is to help patients regain their physical and cognitive abilities following a stroke. The activities resemble scenarios we encounter during daily life, and the therapeutic content has been validated by therapists. The needs of stroke survivors vary widely, and Home PSP is designed with this variety in mind. A therapist offers personalized guidance at a distance based on data collected with the different technologies that make Home PSP. The program is underway in Manitoba, and contents can be adapted for patients with traumatic brain and spinal cord injuries.

For some, at-home telerehabilitation allows them to receive structured therapy that they would not otherwise be able to receive. Many people will benefit from this program, which reduces family burden by limiting travel and indirect care costs.

Brite and Dan Andreae

profile picture of Dan Andreae

Brain Injury Canada would like to extend our sincere appreciation and an enthusiastic thank you to Dan Andreae, our honourary patron, for his generosity in supporting the BRain Injury and TEens (BRITE) platform. He is matching donations up to a total of $15,000 during our fundraising campaign, enabling us to build this resource for youth in Canada.

A message from Dan Andreae on BRITE

“I am proud and excited to be supporting a vital and innovative initiative that will help teenagers cope more effectively with the effects of brain injuries on all levels.  With this first in Canada program Brain Injury Canada will provide crucial information and resources to  teenagers in communities across the country.”

About Dr. Dan Andreae

Dan Andreae is an award winning professor, executive director, community leader  and advocate, volunteer and citizen. Most recently he was selected as Philanthropist of the Decade for 2022 by the International Association of Top Professionals (IAOTP).While inclusion with the International Association of Top Professionals is an honor in itself, only one member who is a dedicated Philanthropist is selected for this distinction. Dr. Andreae is being recognized for having over two decades of professional experience as an educator.

Born in Canada, Dr. Andreae holds a Doctorate of Education from the University of Toronto. His Masters in Clinical Social Work was earned at Wilfrid Laurier University. Prior to attending Wilfrid Laurier University, Dr. Andreae earned his Bachelor’s Degree in Psychology from York University in Toronto. He was awarded an Honorary Doctorate of Laws from Assumption University in Windsor, Ontario. As a result of studying with the Benson Henry Mind Body Institute in Boston, affiliated with Massachusetts General Hospital, Dr. Andreae was granted membership in the Harvard Medical School Postgraduate Association and is a certified Health Coach and a Founding Member of the Institute of Coaching affiliated with Massachusetts General Hospital and Harvard University.

As a dynamic, results-driven leader, Dr. Andreae has demonstrated success not only in academia but has also been an outstanding community advocate and true visionary of his time. He believes that “Education is not just an intellectual exercise; it is most effective when the head meets the heart and knowledge can be applied to enhance the quality of one’s life on all levels; educational, physical, spiritual and social.”

His outstanding leadership and commitment to his research has led him to teach over forty-five different subject courses at the college and university level. His focus has been related to psychology, but Dr. Andreae’s approach has been to heal a person as a whole. Dr. Andreae’s involvement in neurodegenerative causes has made him also realize that education and research around the brain is crucial and has led to the management of conditions and enhanced quality of life. This applies to a wide range of issues from Alzheimer’sautism, and other traumatic brain injuries. Dr. Andreae is currently interested in the relationship between stress, brain health and resiliency. Dr. Andreae is a strong proponent of Life Long Learning recognizing as things are changing in our fast paced world, continuous learning is no longer a luxury but a necessity.

Throughout his remarkable career, Dr. Andreae has received numerous awards and accolades for his outstanding leadership and commitment to Psychology and Higher Education. He has been recognized worldwide and he remains active in his community. IAOTP has awarded Dr. Andreae as Top Professor of the Year in Higher Education, he received the Professor of the Decade Award and was given the prestigious Lifetime Achievement Award. He was named Man of the Year and was awarded as the Male Visionary of the Year. In 2020 Dr. Andreae was chosen as Humanitarian of the Year and earned the International Hero Award for Higher Education. He was interviewed on TIP International Radio and was featured on two billboards in NYC on the famous Reuters Building. Dr. Andreae graced the front cover of TIP (Top Industry Professionals) Magazine and TIP Magazine released a special edition dedicated solely to Dr. Andreae.

Dr. Andreae has been selected as Intellectual of the Year for 2020 by the Top 100 Registry and was featured in the Wall Street Journal by Marquis Who’s Who. In 2019 he received the Outstanding Leadership and Volunteer of the Year Award from the Weizmann Institute of Science, one of the world’s most esteemed research and educational institutes. Dr. Andreae also received the Lifetime Leadership Award from the National Eating Disorder Center at Toronto General Hospital for his support and guidance and Laurentian University in Sudbury, Ontario recently presented him with its inaugural Impact Award for community leadership and vision. For 2017, he was featured on the cover of Marquis Who’s Who in the World first magazine edition. In 2016 he graced the front cover of Elite Magazine and was the 2015 recipient of Oxford Who’s Who Tier of Excellence Award, Lifetime Accomplishment Recipient, and Covington Who’s Who Professional of the Year. In 2011 he was named Faculty and Staff Mentor of the Year and Faculty of Psychology of the Year. Recipient of the Distinguished Teaching Award at the University of Waterloo, and two-time recipient as Faculty of the Year at the University of Guelph Humber. In 2010, Dr. Andreae received the prestigious Ontario Medal of Good Citizenship presented by the Lieutenant Governor for his work as a transformational leader in the social work profession. In 2008 he received the Lyall Hallman Social Work Award. In 2007 received an Honorary Doctorate of Laws from Assumption University for contributions to health care and in 2019 he received an Honorary Degree from the Humber Institute of Advanced Technology. In 2006 he was named Canadian Social Worker of the Year and recipient of the Alzheimer Champion of Change Award by Princess Yasmin Khan, President of the International Alzheimer Society. He received the Lifetime Achievement Award by the Ontario Association of Social Workers. He also received the Outstanding Service Award for Leadership by the Alzheimer Society of Toronto and Inaugural June Callwood Outstanding Volunteer Award Presented by the Premier; Queen Elizabeth Diamond Jubilee Medal and Canada 125 Medal. In 2001 he was named Laurier’s Alumnus of the Year, was chosen as one of the Top 100 Alumni of the University presented during it’s centennial year, The Brain Injury Association of Canada Lifetime Achievement Award, and Ontario Social Worker of the Year for 1999.

Dr. Andreae’s community involvement includes being the first Executive Director of the Alzheimer Society of Toronto, and Chair of the Patrons Council of the Society. In addition, he has been the longest serving President of the social work profession in Ontario, former Vice President of the Psychology Foundation of Canada and is the current Health Advisor and Special Advisor to Weizmann Canada. He is a member of the Board of Governors of the Michener Institute, under part of the University Health Network, member of the Ontario Association of Social Workers; Alzheimer Society of Metropolitan Toronto and has built province-wide coalitions and worked closely with elected officials and senior civil servants to lead a 10-year campaign to establish social work as a regulated profession in Ontario. This successful campaign culminated with legislation that protects and benefits Ontarians led to the creation of a College of Social Work to regulate the profession. Dr. Andreae has also supported what are called “town to gown” public lectures at Laurentian University in Sudbury, Ontario. He is also sponsoring a pioneering lecture series. These are free and open to the public where interesting experts are invited to give a lecture and answer audience questions, called the Dr. Dan Andreae Presidential Lecture for Living in Healthy Communities. Speakers over the years have included Dr. James Orbinski, who on behalf of Doctors Without Borders, accepted the Nobel Prize, Dr. Norman Doidge who has written bestselling books on the brain and brain plasticity, Olympic winners in skiing and skating and Stephen Page, singer for the group Bare Naked Ladies on mental health issues are also in attendance.
Looking forward Dr. Andreae would like to continue to motivate students to learn and to do more public education in the community. Looking back, Dr. Andreae attributes his success to his pursuit of knowledge, utilizing his experiences, his passion for his research and to helping people. When he is not working Dr. Andreae enjoys, investigating health issues, current events, travel, baseball, visiting stadiums when in a new city, hockey and collecting signatures of notable people in science, music, history, television and sports. For the future, Dr. Andreae will continue to grow as a professional and make a difference in people’s lives anyway that he can. Dr. Andreae is a valued mentor to several organizations and has been the recipient himself of wonderful mentoring and singles out one key wise, kind and talented individual in Toronto, Dr. Eva Philipp. He says that no person is an island, and we all need support and to learn from others.

For more information on Dr. Daniel Andreae please visit: www.iaotp.com
To view his most recent award please visit: https://youtu.be/gdEi7OXBY68

BRITE

Brain Injury Canada is proud to introduce an exciting new project: BRITE (BRain Injury and TEens), an online resource for youth aged 13-18 living with brain injury.

BRITE logo

BRITE will serve as the go-to resource for teens impacted by brain injury – providing them with access to education and information that will answer their questions; provide recommendations for physical and emotional support; connect them to peers and professionals; and provide them with the tools they need to feel empowered to take their next steps, wherever they may be in their journey.

Three Pillars of BRITE

 

Writing in notebook
Information/Education Resources
Group of youth walking in nature
Mental Health Resources
Youth sitting at table talking with laptops
Community Building

This resource will focus on the areas of mental health; education and play; relationships; and transitioning into adulthood. It will be developed in partnership with and feature supporting resources from institutional and community partners.

Developed under the guidance of a Scientific Advisory Committee of leading Canadian experts in clinical care and research in brain injury, this resource will integrate evidence-based knowledge with insights from individuals with lived experience. 

Thank you to our corporate sponsors

Frequently Asked Questions

Who is the BRITE Resource being developed for?
The BRITE Resource is being developed for Canadian youth, aged 13 – 18 years, who have had a brain injury or who have a loved one with a brain injury. Content will be accessible, age-appropriate and reflect the varying experiences of individuals living with brain injury in that age range.
Why are you developing this resource?
Brain injury is complex and often life-long. Acquiring a brain injury as a teenager adds extra layers of difficulty to a time of life when an individual is already struggling to discover who they are and what they want their next chapter to be. Our goal is to empower youth to take control of their own knowledge development by providing peer-reviewed, evidenced-based information that can give them answers to their questions about brain injury; address their concerns; and give them tools to take next steps, wherever they may be in the recovery journey.
What is included in the BRITE Resource?
The BRITE Resource will include the following, all developed exclusively for teens and based on input from the brain injury community:The Three Pillars of BRITE
  1. Information/Education Resources
  2. Mental Health Resources
  3. Community Building
Who is involved in the development of the BRITE Resource?
Brain Injury Canada is working with key stakeholders from the brain injury community, including our Scientific Advisory Committee, professional health care workers, and those with lived experience (parents and youth who have grown up and can reflect on their experience) to ensure we are addressing the needs of the community.

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