August 26, 2011
Understanding Brain Injury as a Chronic Disease
Many brain injury survivors live many years after the injury. Some continue to make progress and do well, while others develop more health problems. There is a new way of thinking about brain injury that has implications for all survivors and their caregivers. The Brain Injury Association of America (BIAA) is striving to have brain injury reclassified as a chronic disease.
What is a chronic disease?
The chronic disease classification means that brain injury affects every system in the body, can cause other health problems, and can make existing problems worse. I’ve been interested in this topic for years because brain injury certainly was connected with, or caused, other problems for my husband Alan after he sustained a severe anoxic brain injury.
Currently, brain injury is considered by most insurers and even some medical professionals to be an event that happens once and has time-limited consequences. Insurers often pay for the acute care and some rehabilitation, but then consider their responsibility met. Many professionals don’t understand the special needs of people who’ve had a brain injury for years after the injury. That’s why we need a better model that treats brain injury as a chronic disease that can last a lifetime.
What are some common chronic diseases? They include heart failure, diabetes, and chronic kidney failure. We all know that patients with those diseases require careful monitoring, education to stay healthy, and medical treatment when the disease gets worse. Most chronic diseases cannot be cured, but the symptoms can be controlled with good treatment. Spotting problems early can reduce complications and hospitalization.
In a 2009 position paper, Conceptualizing Brain Injury as a Chronic Disease, the BIAA recommended that people who suffer a brain injury should receive the same level of long-term monitoring, health education, and treatment as people who have the traditional chronic diseases. Doctors should manage their care long-term, and insurers should pay for treatment equal to that of other chronic diseases.
What health problems are connected to brain injury?
The authors of the position paper reviewed many studies and found that the following problems are related to brain injury. Before you get too worried, please remember that every individual is unique, and there is no certainty that you’ll develop these problems.
- Neurologic disorders- including seizures/epilepsy, vision problems, and sleep disorders.
- Alzheimer’s disease/dementia- brain injury is considered a risk factor for dementia. Alan developed vascular dementia after the lack of oxygen damaged the memory centers of his brain. Dementia progressed slowly, so he was still able to use rehab to build back important skills.
- Neuroendocrine disorders- includes thyroid or other gland problems.
- Psychiatric disease- this can include very serious problems with depression, anxiety, substance abuse, obsessive-compulsive disorder, PTSD and other conditions. Alan received treatment for depression and occasional episodes of intense distrust and anger.
- Sexual dysfunction- brain injury can affect fertility, desire, and performance.
- Muscle problems- spasticity, abnormal movements.
Other researchers report higher rates of movement disorders. Alan developed Parkinson’s disease, which caused problems with coordination, swallowing, and walking. Fortunately, medications and physical therapy helped a lot.
What can I do about these risks?
There are plenty of steps survivors and their caregivers can take.
- Take good care of your whole body. Get regular check-ups and screening tests such as mammograms, blood pressure, and cholesterol checks. Take medications as prescribed. Eat well, and get plenty of rest. Get some form of exercise regularly.
- Take good care of your mind. Let someone know if you’re feeling depressed, anxious, hopeless, or if your thoughts aren’t making sense. Good treatments are available. Do something you enjoy every day.
- Print out the BIAA Position Paper and give it to your treatment team. Raise their awareness, and make sure you get the follow-up your condition requires. If you have multiple problems, request a case manager to help coordinate care.
- Report changes or new symptoms early. You know yourself best. Describe the change in your own words. Write down when you notice the symptom, what makes it better or worse, and how it affects your functioning. Keep good records since it can take awhile to figure out if a problem is related to the brain injury, medications, or something new. It took months to correctly diagnose Alan’s Parkinson’s disease.
- Stay informed about new findings and treatments. Share your experience and coping strategies with others in support groups, or as a speaker to raise awareness. Keep your spirits up, and celebrate the progress you have made.
Next week I’ll write about aging with brain injury, and offer strategies for family caregivers.