Brain injury associations across Canada are striving to meet the needs of the brain injury survivors and families they support, but their limited resources are a significant barrier to addressing all of the needs of their members. The BrainLove partnership was created to increase these resources. By fundraising and volunteering, we are working to narrow these gaps in funding and personnel in order to improve the provision of support for survivors and their families.
WHAT KIND OF SUPPORT IS NEEDED?
Because every brain injury is unique, support needs to be tailored for each individual. There are, however, many survivors, families and caregivers who can benefit from additional support in the areas listed below.
Family & Caregivers
Education & Stigma
WHAT IS CURRENTLY IN PLACE?
Most brain injury associations across the country provide the following, but funding limits how much they are able to offer:
- Support groups for survivors, families and caregivers.
- Assistance with finding supported housing and employment.
- Recreational programs
- Quality of life programs
- Educational programs for survivors, families and professionals
- Cognitive and psychosocial rehabilitation programs
WHERE CAN YOU FIND BRAIN INJURY SUPPORT IN YOUR PROVINCE?
FURTHER INFORMATION ON SUPPORTS NEEDED
While brain injury survivors undergo intensive rehabilitation immediately following their injuries, these services come to an end once survivors have made what is deemed to be sufficient progress or once they have reached the end of paid services.
Recovery after brain injury can be a slow process, which often takes years. That’s why survivors need opportunities to maintain or increase the gains they made during their post-injury rehabilitation. Without these opportunities, many survivors have reported feeling like they are regressing.
Regular, adapted and customized exercise programs and learning opportunities are key to their continued progress. Some activities that can promote their recovery include:
- Art therapy – participating in art-centered activities such as drumming groups and painting classes have been shown to improve communication skills and mood, among other benefits.
- Walking groups – regular physical activity increases the amount of blood sent to the brain, which has been linked to improvements in the brain’s plasticity (its ability to repair itself after injury).
- Meditation – mindfulness activities have been found to have a positive impact on memory and concentration in brain injury survivors.
Brain injury survivors and their families taking part in a painting session.
‘Social Beans’ survivor group meeting for coffee in Regina, SK.
Unfortunately, social isolation is one of the most common effects of brain injury. Many survivors report a loss of relationships they had prior to sustaining their injuries – a result of the cognitive and behavioural changes they experience post-injury.
They also find it difficult to establish new relationships with people who do not have brain injuries as others often have a limited understanding of how the brain injury affects survivors.
Physiological symptoms like light and noise sensitivity among brain injury survivors can also make meeting in public particularly challenging. Adding to the challenge, some survivors develop anxiety and worry about being judged or misunderstood when out in the public sphere.
What survivors need are opportunities to socialize in environments that can accommodate their individual needs and enable them to develop and maintain meaningful relationships. Adapted exercise classes, coffee groups and retreat weekends with survivors and their families are just some of the activities that can have a profound impact on the quality of life of brain injury survivors. “I don’t have to explain myself here,” is often heard at SBIA’s Social Beans groups, “People here get me.”
Did you know that: Brain injury survivors are more than three times more likely to commit suicide than their counterparts without brain injuries?
Brain injury and mental illness often coexist, which is why mental health support for brain injury survivors is so vital.
Some survivors’ mental illnesses can go undiagnosed or be misdiagnosed because the effects of the two diagnoses can be similar. Others have to seek separate support for each condition since there is rarely support for the dual diagnosis.
The best option is an integrated approach, where both mental health and brain injury effects are considered and services for both diagnoses are coordinated. This way, survivors can receive more personalized and effective treatments.
PUBLIC EDUCATION AND DE-STIGMATIZATION
The stigma attached to brain injury can interfere with the ability of survivors to improve their quality of life. People find it difficult to recognize an “invisible disability” like brain injury – some survivors are mistakenly perceived as drunk or are treated like they are children because people do not understand the effects of brain injury. Regrettably, too many survivors also notice that people now feel uncomfortable around them.
The stigma surrounding brain injury also impacts employment prospects. There are survivors who worry that disclosing their diagnosis may cost them their jobs while others are unable to keep a job because employers do not make accommodations for them.
Further education across all public services is also necessary in order to improve the provision for brain injury survivors. For instance, a 2016 study revealed that people with brain injuries are 2.5 times more likely to go to prison than those without brain injuries, yet many corrections officers are not trained to identify the signs of brain injury and work with survivors accordingly (Learn more here).
Raising awareness about brain injury is essential so that we can help people to prevent brain injuries, change public perception about ABI, and promote support. Through educational sessions in schools, brochures in local communities, and public events, awareness about brain injury will continue to increase across the nation.
BrainLove volunteers raising awareness and fundraising. Photo Courtesy of SRPA.
FAMILIES & CAREGIVERS
Did you know that:
1/3 of brain injury survivors are cared for by their spouses, 1/3 are cared for by a parent, and 1/3 live by themselves or with a sibling?
The impact of a brain injury affects everyone around the survivor, but the needs of families and others caring for brain injury survivors are often overlooked. Providing support for them is as just as vital.
Many family members experience ambiguous loss – grief for a loved one who is physically present, but quite different. Roles can change from partner or parent to caregiver. The ambiguity can lead to depression and anxiety as well as other mental health difficulties.
Family members often take on new responsibilities, including financial, emotional, and physical support, but may also need to deal with challenging behaviors that sometimes follow after sustaining a brain injury.
A wider support network, including caregiver support groups, are at the top of the list of needs that those who care for survivors have found most beneficial. With increased funds, brain injury associations can provide a wider range of support for them including medical assistance, further training and education and respite.
53% percent of the homeless population in Canada have brain injuries, and 70% of them became homeless after sustaining their first brain injury. These statistics suggest a significant correlation between brain injury and homelessness; this could be due to the behavioral and cognitive challenges survivors experience post-injury. These, combined with a lack of appropriate support, can make securing housing a significant challenge for ABI survivors (Read more about this here).
Other brain injury survivors are housed in hospitals or geriatric homes, regardless of their age, due to a lack of funding for dedicated ABI services. Not only are many of their needs left unmet, but these placements can also be very demoralizing for survivors, who are fully aware that these residential options are not designed for brain injury survivors.
Supported and appropriate housing are the greatest needs for brain injury survivors. They need their own private space where they can be independent, but can also access in-house care supports like housekeeping and personal care along with planned opportunities to develop and maintain meaningful engagement.
Cooperative housing models, like the Clubhouse Model, can be beneficial for brain injury survivors. If they can live in or near a place where they can access programs and make contributions – even if they may not be able to work at a full time job – they can regain many skills and, importantly, their feelings of self-worth.
- “Music interventions for acquired brain injury,” January 2017, NCBI. (Link)
- “Need a quick brain boost? Take a walk,” July 2016, Harvard Health Publishing. (Link)
- “Physical activity may leave the brain more open to change,” December 2015, Science Daily. (Link)
- “Exercise and Your Brain,” August 2008, BrainLine. (Link)
- “Art Therapy: An Underutilized, yet Effective Tool,” July 2014, NCBI. (Link)
- “Art and the Brain,” September 2017, Art4Healing. (Link)
- “A pilot study examining the effect of mindfulness-based stress reduction on symptoms of chronic mild traumatic brain injury/postconcussive syndrome,” July 2013, NCBI. (Link)
- “Survivors of traumatic brain injuries more likely to die young,” January 2014, LA Times. (Link)
- “Association between traumatic brain injury and incarceration: a population-based cohort study,” December 2016, CMAJOpen. (link)
- “Rebuilding Relationships after TBI Trauma,” April 2011, Kreutzer, J. Pacific Coast Brain Injury Conference.
- “Traumatic Brain Injury: Unmet Support Needs of Caregivers and Families in Florida,” December 2014, NCBI. (Link)
- “The effect of traumatic brain injury on caregivers,” March 2015, American Psychological Association. (Link)
- “2.6 Traumatic Brain Injury in the Homeless Population: A Toronto Study,” 2009, Canadian Observatory on Homelessness. (Link)