by Carolyn Lemsky, Ph.D.,C.Psych.
I started my career trained as a neuropsychologist– the kind of psychologist that provides assessments of thinking, learning and memory when there’s cause to believe that there might be some problem with the brain. I had no intention of working with people who struggle with their substance use. During my quarter century of practice the truth about addiction gradually came to light. Addiction is one of the most common problems human beings face, and there is a strong relationship between substance use and brain injury. In the end, it isn’t surprising that I did develop an interest in working with people who face the challenge of addiction. In fact, I’d have to say that my greatest regret as a professional is that I didn’t know more about addictions and substance misuse early in my career.
When I first started in practice I was like many of the brain injury providers I meet while providing training sessions. I overestimated the danger and complexity of working with clients who continued their substance use, and I certainly underestimated my capacity as a clinician in inpatient and community outreach brain injury settings to do something useful. I didn’t question the wisdom of recommending that a person get treatment for their addiction before getting brain injury rehabilitation or kicking substance using patients out of treatment settings. If I caught wind of a substance use problem, I tried (often in vain) to refer. If I was concerned about a client losing rehab care and be unwilling or unable to access appropriate addictions treatment, I might actually avoid asking the some very important questions and turn a blind eye to their problems with substance use.
Fortunately, I met a few clients who wouldn’t let their issues with substance use go underground. Their repeated crises, re-injury and vocal family advocates motivated me to develop a more realistic attitude about substance use and abuse. The other lucky stroke was that I was in contact with some very concerned addictions professionals at the Centre for Addictions and Mental Health who recognized the high rate of co-morbid brain injury in their client population, and were interested in creating practical solutions. What I will share here are a few things that I wish I knew when I was starting out.
Co-occurring brain injury and addictions are very common.
It has been estimated that as many as one third of people with a history of brain injury go on to express post-injury substance use difficulties in the long run. For people who sustain injuries that require rehabilitation, the rate of problematic substance abuse seems to go down during the first few years, but problems often re-emerge after active rehabilitation is finished. This may be because coping with a brain injury can be very stressful, and the use of drugs and alcohol may be used as a form of coping.
It appears that living with brain injury can contribute to the development of a problem with substance use, but there is clear evidence that have a problem with substance use puts people at risk for having a brain injury. It seems that people with problematic substance use, particularly alcohol, are more likely to sustain a traumatic brain injury. In fact, depending on how stringently you define problematic substance use (from dangerous use to dependence) and whether you as the patient themselves or others, between 30 to 51 per cent of adolescents and adults surviving brain injuries that require hospitalization have a pre-injury history of problematic substance abuse. That’s much higher than in the general population.
When people seeking services for addictions are screened a very high number of them report histories of brain injury. Our own data collected at the Centre for Addictions and Mental Health (CAMH) suggests that roughly 20 percent of people who present to services—that’s one in five—have a history of brain injury severe enough to suspect some long-term changes in the brain. We’re continuing to study the issue, but our preliminary analyses do suggest that people with a history of brain injury are more likely to also have other mental health diagnoses, and may require more episodes of care. These findings are consistent with a number of other studies conducted across North America.
There is also evidence that the delicate balance of the brain’s reward system may be upset as the result of either brain injury or substance use itself. It is common for clients with damage to structures that mediate the experience of emotion. This results in a situation in which the person no longer responds to the punishing impact of mistakes, and becomes driven to gratify immediate needs. For that reason they may be more vulnerable to developing an addiction. It’s also true that it takes less substance use to cause more of a problem after brain injury. Difficulties with thinking, balance and behaviour may be worsened at relatively low levels of substance use.
Gaps in the System
Despite the high incidence of co-occurring brain injury and substance use, very few programs in Ontario have been developed to address the special needs of people who are affected. A 2005 survey of Toronto ABI Network member agencies found that a very small minority of rehabilitation programs consistently screened for substance use problems and only one provided regular patient education on the topic. In that same period of time, none of the addictions programs approached completed systematic screening for brain injury.
It has been common policy to dismiss individuals known to be actively using substances from rehabilitation on the theory that they are unable to benefit from the care offered. People with brain injury presenting to addictions programs may also be lost to care because they may appear unmotivated for treatment as a result of difficulty getting organized to keep appointments, remembering relevant information, being impulsive or disinhibited, and generally having difficulty following through with treatment recommendations.
Lessons Learned:
The Substance use and Brain Injury Bridging project, a partnership between the Center for Addictions and Mental Health and Community Head Injury Resource Services of Toronto was developed as a knowledge transfer initiative to increase the capacity of both addictions providers and rehabilitation providers to provide care to this underserved and very complex population. The initial phases of this project saw the development of a cross training manual as well as a client workbook designed to illustrate how treatment programs may be adapted to accommodate individuals with cognitive impairments. Training sessions were provided across Ontario to introduce basic concepts in both brain injury and addictions and to promote shared care through the development of community partnerships. Since training began five years ago we’ve learned some very important lessons.
The first lesson was that Stigma, on the part of patients, providers and family members can be a barrier to getting the care you need. In our early studies we found that addictions workers often were not sure how to screen for brain injury, what impact a brain injury might have on treatment and how to accommodate people with brain injury. They too expressed concern that people with a history of brain injury would be unpredictable, unable to benefit from care or unmotivated. Family members and the clients themselves might prefer to get services in a brain injury setting (which might not have the right resources) because of a concern about the stigma associated with addictions. We found that openly discussing stigma and incorporating video and live presentations of clients telling their stories helped to break down stereotypes which were remarkably similar in groups of addictions and brain injury providers—that the unknown population would be dangerous, aggressive, unpredictable and unable to make a change. Our clients benefited from the opportunity for self-advocacy, and so, we believe, did program development
Another significant barrier seemed to be a belief on the part of brain injury providers that people with brain injury and substance use were not already in their case loads. The year or two of abstinence that often follows moderate to severe injury means that rehabilitation services have faded before the real difficulties with substance use actually appear. Instead of referral to brain injury services, clients who began to use substances in a harmful way were more likely to be referred to addictions services. Despite education regarding international studies, it wasn’t until the screening project began in their home programs that frontline brain injury and addictions providers began to take more interest in the training we were providing. Having homegrown data seems to have done the trick.
When an addictions provider is aware that the problem some of their clients may be having in getting to appointments, completing assignments or remembering what happens in sessions can be the result of brain injury, they are more likely to get consultation and make the right kind of accommodations.
Clients have taught me how much brain injury rehabilitation and addictions servicers have in common. With each problem there’s stigma to overcome. Whether its brain injury or years of substance use, the main task is to rebuild one’s identity in such a way that it includes a realistic and positive assessment of their strengths and abilities. Shame and guilt need to be addressed and meaningful ways to engage with life, the community and those they love need to re-emerge anew. The 12-steps offer wisdom that supports this sort of life transformation and the structure of groups—if they are small and supportive, can be just what a person with cognitive difficulties needs to move forward.
