I was brain injured in 1977 at the age of 22. Do the math and you’ll get my present age. Not surprisingly, because I am getting along in my years, I am always interested to read about long-term outcomes for persons with brain injury.
Over the last few years, brain injury researchers have noted that aging persons with brain injury have a reduced quality of life. Brain injury is related to Parkinson’s disease, Alzheimer’s disease, and Chronic Traumatic Encephalopathy. So researchers are trying to reframe how we think about brain injury. It is not something you recover from. Rather, it is the beginning of a disease process that must be continually managed for the rest of the person’s life.
In the April 2015 e-newsletter I received from the Model System Knowledge Translation Center (MSKTC) I read about a presentation on TBI as a chronic condition by Flora Hammond, Md, Indiana University School of Medicine and Rehabilitation Hospital of Indiana, and John D. Corrigan, PhD, Ohio State University Wexner Medical Center. You can listen to it online and download the slides.
MSKTC researchers have access to the stores of data on persons with brain injury that has been collected by Model System hospitals. Data on individuals who have been treated at Model System hospitals becomes part of an ongoing research program that follows up with people at 5 year intervals for 25 years. Hammond and Corrigan have recently looked closely at the date from 5 years after treatment and what they found was astounding. At 5 years after treatment and rehabilitation in Model System Hospitals, about 40% of the patients had declined.
Decline happens for a variety of reasons including death, degenerative diseases like Parkinson’s and Alzheimer’s, loss of functional independence, and, for those with frontal lobe injury, disinhibition and poor judgement, which leads to risky behaviors like substance abuse. So, five years after brain injury, about 2 out of 10 die and 3 out of 10 decline for one of the reasons above.
This evidence, say Hammond and Corrigan, supports their hypothesis that brain injury is a chronic disease process. They call it Chronic Brain Injury or CBI where processes that impaired the brain and other organ systems evolve into a lifelong health condition.
So, and this is the point of it all, brain injury needs to be managed over the entire lifetime. I know this. I’ve been managing mine for years. I have to manage harder these days as it seems to be getting worse. I am racked with arthritis from the injuries to my bones and I think like someone older or more disease ridden. The slow processing used to frustrate me when I didn’t know what is was, as I’ve written in my book. The slow processing still frustrates and embarrasses me now that I know the what and why of it. Once I learned that my aggravating emotional and behavioral problems were exacerbated by brain injury, I went back to school to get a degree in speech-language pathology to learn more. The knowledge I gained allows me to self-manage pretty well. But not everyone is able or willing to go back to school to get a master’s degree for their therapy. What do brain injury researchers suggest should be done?
Hammond and Corrigan say we need ongoing clinical surveillance of persons with brain injury. We need to understand more about risks and complications after brain injury. The patient also needs to be engaged by receiving self-management training.
This is where my brain-injured SLP brain kicks in and this paragraph is for my SLP friends. I think we have skills that could be put to use to do self-management training. The role of the SLP in working with individuals with brain injury is to participate in the remediation of cognitive (thinking) and linguistic (listening, speaking, reading, writing) skills. We can teach persons with brain injury to think about their brain injury symptoms and use language and strategies to do such things as seek help from their doctors and avoid behavior problems that arise due to the nature of their brain injury. Speech-language pathologist could do so many patient-oriented rehabilitation exercises that would address the need of individuals with brain injury to manage their chronic disease process.
During the MSKTC presentation, Hammond and Corrigan suggested a CBI management approach that includes regular interaction with doctors and therapist. Yes, I agree. We currently treat brain injury like something that can be cured instead of want it is: a chronic condition. (And the medical and insurance establishment will have to do some mighty lifting to make changes in the way they are set up to treat persons with brain injury.) The brain injury researchers call for ongoing assessment and supports for self-management with the clinic initiating the follow up.
At the end of the MSKTC online program, someone threw out a question about the development of programs for self-management and there was a huge, yawning silence. There are none.
I challenge speech-language pathologists to develop more and different ways to conduct therapy when working with persons with brain injury. I know I’ll be thinking about this a lot more and presenting ideas along the way in this blog.