Brain Injury Awareness Month takes place every June. The awareness campaign aims to bring awareness to the cause of brain injury and educate people about brain injury.
ST. PAUL – People with traumatic brain injury (TBI) are often obscured from the naked eye. The challenges that come with this condition can be invisible to others.
According to Brain Injury Canada, TBI is a global leading cause of disability. In Canada, about 18,000 people are hospitalized for TBI annually, and two per cent of the population lives with TBI.
Brain Injury Canada expects TBI to be among the most common neurological conditions to affect Canadians by 2031.
But despite how common brain injury is, Brain Injury Canada states that it is often difficult to gather accurate statistics due to reliance on doctor and hospital reporting. “Many brain injuries are not actually reported at the time of injury (or at all), which impacts the statistics,” reads Brain Injury Canada’s website.
And statistics are vital to understanding an issue to ensure a proper response.
But gathering more data requires more awareness to the issue, says Anthony opden Dries, executive director of St. Paul Abilities Network (SPAN), a St. Paul-based non-profit.
“The more education and the more people are aware that brain injuries do occur... and their impact on individuals and families,” it allows for better opportunities to collect information, says opden Dries.
Governments will not fund something if there is no case to justify that funding, he adds.
SPAN operates a brain injury program that began in 2001 through the Alberta Brain Injury Initiative (ABII).
The ABII is a provincial initiative aimed at assisting adults who have acquired a brain injury, helping them participate, live, and work in their communities. SPAN is the service coordinator for the program in St. Paul.
While the initiative is based in St. Paul, SPAN helps brain injury survivors over the age of 18 throughout Lakeland.
Support for people with TBI
Curtis Isley is SPAN’s ABII coordinator.
“We’re typically helping support people with various aspects of daily life,” says Isley. This includes establishing routines, relearning tasks like grocery shopping and cooking, and navigating social relationships.
They also provide support connecting their clients with other resources and services as needed. The idea is helping individuals regain their independence through practical reintegration strategies and ongoing assistance, according to Isley.
opden Dries agrees and says it is about meeting survivors where they’re at. For example, some people may have family support, while others don’t.
“That’s where the staff comes in,” he says. They help people with TBI, or potentially the respective families of those with TBI, to coordinate with other services.
Challenges faced by families
Both opden Dries and Isley acknowledge that traumatic brain injury does not only affect the person with it, but their caregivers too, which are often family members. And it can be challenging for them to support a family member with TBI, so SPAN also offers support to caregivers.
“We’re not talking about paid caregivers. We're talking about the people that are actually involved in that person’s everyday life. They’re not being paid to do this,” says opden Dries.
Isley agrees, before stressing the importance of providing support to caregivers. Sometimes, caregivers are the husbands or wives, who may have been living a normal life.
Then an accident happens, leading to their partner having a traumatic brain injury, changing their life completely.
opden Dries nods. “There’s also grief, and it’s not that the person is gone, the person’s abilities have changed and sometimes their personalities too.”
Isley says the change of abilities is a big challenge. “If your partner is no longer able to help share in the responsibilities of cooking or cleaning,” the caregiver may feel like everything is falling apart, he says. Not to mention if the couple has children, it can add a lot of pressure to the caregiver.
“So, we’re here to support them... because caregivers get overlooked a lot,” Isley says.
opden Dries adds that it may also be difficult for families to navigate and access services, and SPAN can help with that.
More support needed
But there is a need for more support to groups like SPAN, especially in rural areas like the Lakeland. ABII staff, for example, sometimes have to drive hours to meet with clients located in different municipalities, minimizing the amount of support and time that they can provide.
While there has been increased awareness and understanding on TBI in part of the government since 2001, “There appears to be a greater need for what we're doing... awareness and advocacy is a really big part of it,” says Isley.
Creating awareness
There are some situations when someone with a TBI may not get the proper support and resources they may need.
Providing a specific example, Isley says that someone may sustain an injury causing damage to the brain due to stroke, and they only medically consider the stroke and not the potential effects it may have had on the brain. So, they often don’t end up receiving the proper support and resources they may need.
“We get referrals from people who had a stroke or an accident... and they had no idea there are supports available,” says Isley, explaining brain injury is caused by a myriad of factors and conditions.
One common example that can cause TBI is motor vehicle accidents.
“There’s a much larger need than we’re aware of,” says Isley.
Lack of support
A lack of support may also lead to some undesirable outcomes with the law. For example, opden Dries says there have been instances in the past where someone with a TBI was arrested and imprisoned, because it looked like they were on drugs or drunk, “When actually, it was brain injury,” he says.
They simply have lost the ability to communicate what their needs are. That’s where support services come in, to figure out how to best help.
Isley says that lack of support may also lead to some people with TBI ending up in group homes, which puts more stress on these types of support institutions.
“There’s very little support for people with brain injury who need long-term care. A lot of them end up in retirement facilities or long-term care homes,” even if they may be between 30 or 50 years old, Isley says. “There’s just not a lot of other options.”
Support through SPAN
When asked how many people SPAN can support, opden Dries says regardless of the number, “We would want people to reach out.”
If they see a significant jump in referrals, then so be it, he says. “We would work with our contractor” to see if there was a need to expand the program, says opden Dries.
It’s important for people to reach out, he explains. This gives SPAN tangible data in the community to work with. That way, if there is a need for expansion, they can show the government that data.
Isley agrees. “If anybody has a need, they should absolutely reach out. Because we can definitely help find them something if we didn’t have the capacity at that moment.”
