Icebergs, Brain Injury and the Chronic Disease Process
Brent Masel, M.D. and Douglas DeWitt, M.D. refocused our thinking about the chronic disease aspects of brain injury in their 2010 paper on the subject. The Galveston Brain Injury Conference in 2012 brought together over 50 experts in brain injury research and treatment to re-frame brain injury as a chronic disease. The results of the Galveston conference was distilled into the following consensus statement:
“Injury to the brain can evolve into a lifelong health condition termed Chronic Brain Injury (CBI). CBI impairs the brain and other organ systems and may persist or progress over an individual’s lifespan. CBI must be identified and proactively managed as a lifelong condition to improve health, independent functioning and participation in society.” (Galveston Brain Injury Conference, 2012)
Further to the consensual statement, “CBI was defined as a complex set of disorders that impairs multiple brain and other bodily functions. Impaired functions can occur at the time of the initial insult to the brain or result from degenerative processes triggered by one or more brain injuries. CBI can both cause and accelerate such degenerative processes. The consequences of CBI include physical, cognitive and behavioral deficits that may manifest at different points throughout an individual’s lifespan. The effects of CBI on psychological and social functioning can be severe, resulting in unemployment, family dysfunction, substance abuse, incarceration, homelessness and other causes of dependence on social support programs. The cost of providing services designed to lessen the likelihood of these devastating outcomes must be weighed against the costs of these outcomes on society.” (Hammond F, Malec J, Brain Injury Professional, V 10, N 1 2013 p6)
Brain Injury meets the definition of a chronic disease established by the World Health Organization. In the 2009 report from the Institute of Medicine (IOM) their review of the long term consequences of brain injury showed convincing risk for dementia and Parkinsonism, cognitive impairments and decline, seizures and hormonal disorders as well as long term psychosocial and psychological problems. All of these problems are complicated by the aging process.
As a person working with individuals with severe brain injuries for over 30 years it is abundantly clear to me that the consequences of brain injury are endured over the individual’s lifetime and can effect all aspects of their life, relationships with others, independence and health. However, as I look at the resources which are available to people with brain injuries I can see that the lengths of stay in acute medical rehabilitation for moderate and severe injuries are decreasing, disability benefits are harder to access, commercial insurance policies provide extremely limited coverage, community resources are sparse, caregiver and family supports are inadequate and specialized resources to assist with the lifespan problems are difficult to find. The brain injury community has identified the chronic disease aspect of brain injury as well as problems related to society’s failure to adequately treat individuals with brain injury. Yet the available resources remain inadequate and most are available solely as “short-term” solutions.
How can we develop new and redesign existing resources to address the lifelong problems associated with brain injury? We are confronted with a chronic disease and currently little extends beyond the initial injury. Perhaps brain injury is best compared with icebergs, you can see approximately 10% of an iceberg and 90% remains below the surface. We definitely know why the Titanic sunk.