Every Brain Injury is Unique
Problems of Awareness
Emotional, Behavioral Changes
Practical Tips for Family and Friends
Home Safety Tips
Some Questions and Answers
A traumatic brain injury (TBI) is defined as a blow or jolt to the head or a penetrating head injury that disrupts the function of the brain. Not all blows or jolts to the head result in a TBI. The severity of such an injury may range from “mild,” i.e., a brief change in mental status or consciousness to “severe,” i.e., an extended period of unconsciousness or amnesia after the injury. A TBI can result in short or long-term problems with independent function.
How many people have TBI?
Of the 1.4 million who sustain a TBI each year in the United States:
- 50,000 die
- 235,000 are hospitalized
- 1.1 million are treated and released from an emergency department
The number of people with TBI who are not seen in an emergency department or who receive no care is unknown.
What causes TBI?
The leading causes of TBI are:
- Falls (28%)
- Motor vehicle-traffic crashes (20%)
- Struck by/against (19%)
- Assaults (11%)
- Blasts are a leading cause of TBI for active duty military personnel in war zones
Who is at highest risk for TBI?
- Males are about 1.5 times as likely as females to sustain a TBI.1
- The two age groups at highest risk for TBI are 0 to 4 year olds and 15 to 19 year olds.1
- Certain military duties (e.g., paratrooper) increase the risk of sustaining a TBI.3
- African Americans have the highest death rate from TBI.1
What are the costs of TBI?
Direct medical costs and indirect costs such as lost productivity of TBI totaled an estimated $56.3 billion in the United States in 1995.4
What are the long-term consequences of TBI?
The Centers for Disease Control and Prevention estimates that at least 5.3 million Americans currently have a long-term or lifelong need for help to perform activities of daily living as a result of a TBI.5
According to one study, about 40% of those hospitalized with a TBI had at least one unmet need for services one year after their injury. The most frequent unmet needs were:
- Improving memory and problem solving
- Managing stress and emotional upsets
- Controlling one’s temper
- Improving one’s job skills
TBI can cause a wide range of functional changes affecting thinking, sensation, language, and/or emotions. It can also cause epilepsy and increase the risk for conditions such as Alzheimer’s disease, Parkinson’s disease, and other brain disorders that become more prevalent with age.
- Langlois JA, Rutland-Brown W, Thomas KE. Traumatic brain injury in the United States: emergency department visits, hospitalizations, and deaths. Atlanta (GA): Centers for Disease Control and Prevention, National Center for Injury Prevention and Control; 2004.
- Defense and Veterans Brain Injury Center (DVBIC). [unpublished]. Washington (DC): U.S. Department of Defense; 2005.
- Ivins BJ, Schwab K, Warden D, Harvey S, Hoilien M, Powell J, et al. Traumatic brain injury in U.S. army paratroopers: prevalence and character. Journal of Trauma Injury, Infection and Critical Care 2003;55(4): 617-21.
- Thurman D. The epidemiology and economics of head trauma. In: Miller L, Hayes R, editors. Head trauma: basic, preclinical, and clinical directions. New York (NY): Wiley and Sons; 2001.
- Thurman D, Alverson C, Dunn K, Guerrero J, Sniezek J. Traumatic brain injury in the United States: a public health perspective. Journal of Head Trauma Rehabilitation 1999;14(6):602-15.
- Corrigan JD, Whiteneck G, Mellick D. Perceived needs following traumatic brain injury. Journal of Head Trauma Rehabilitation 2004;19(3):205-16.
- National Institute of Neurological Disorders and Stroke. Traumatic brain injury: hope through research. Bethesda (MD): National Institutes of Health; 2002 Feb. NIH Publication No. 02-158. Available from: www.ninds.nih.gov/disorders/tbi/detail_tbi.htm.
Forget about everything you have heard. Your experience will be different. No two brains, and thus no two injuries, are exactly alike. This is the only absolute, unbreakable rule concerning brain injury.
The brain is the last frontier of medicine. Medicine has made great strides in the journey to understand and treat chronic and acute disease. Cancer, heart disease, diabetes, even HIV are treatable, even manageable disorders. However, disorders of the brain are far behind the medical knowledge curve. It is estimated that only 20% of those who sustained brain injury survived in 1970. At the turn of the century, that figure has risen to 60%. The increased survival rate can be attributed to incredible advancements in the field of trauma medicine. Unfortunately, knowledge about brain rehabilitation has not kept pace with the ability of medicine to save the person who has sustained an injury to the brain. Here are some basic changes that may be apparent in the brain injury survivor. It has been said before, but it bears repeating: Every brain injury is unique. Each person who sustains a brain injury experiences a unique set of problems. These problems can affect physical and/or cognitive and/or behavioral abilities. There is no magic cure for these problems; brain injury can bring about profound changes.
- Lack of endurance or changes in stamina
- Lack of, or changes in strength
- Sleep disorders
- Problems with vision such as:
- Diplopia (double vision)
- Variable focus difficulties
- Peripheral vision difficulties
- Sensitivity to light, particularly florescent lights
- Olfactory (smell) changes
- Gustatory (taste) changes
- Decreased coordination
- Balance difficulties
- Changes in gait
- Changes in touch or sensation
- Changes in bowel and/or bladder control
- Changes in sex drive, impotence
- Speech difficulties
- Swallowing difficulties
- Attention, concentration difficulties
- Short term memory problems
- Difficulties initiating tasks
- Difficulties following through on tasks
- Problem solving difficulties
- Reasoning problems
- Slowed thought processes
- Time management problems
- Lack of insight or perception
- Inability to comprehend and follow directions
- Academic difficulties
- Difficulties in money management
- Inability to clearly convey meaning
- Inability to understand others
- Denial of deficits related to injury or inability to grasp the scope and meaning of deficits
- Difficulties managing stressful situations
- Sensitivity to over-stimulation
- Withdrawal, depression
- Inability to control anger or temper
- Verbal outbursts
- Lethargy, lack of energy
- Inappropriate social interactions
- Inability to control behavior in social situations
It is important to remember that this list of symptoms or manifestations is not complete. Any survivor may experience few or many of the above manifestations. Every injury is unique. This list reflects characteristics that, unfortunately, are commonly heard about on the BIAC 1-800-955-2443 help line. This list should not be construed as a diagnostic tool.
You Can Help Your Family Member or Friend
Here are some practical tips that can help both the survivor and the family member in the acute, or hospitalization stage of care.
Provide “cues” to aid the survivor’s orientation.
The survivor may need help maintaining his/her orientation to time, place, or people. With some survivors, there may be post-traumatic amnesia. It is common with this amnesia for the survivor to interact with family, friends and health-care staff and have no recollection of the interaction. Be patient. There may also be short-term memory difficulties. These are common problems.
Provide a calendar and clock (preferably without a second hand) to help orient to time. Provide familiar photographs of family, friends, pets and familiar places. These will help orient to people and place. A smaller group of family and friends visiting regularly is better than large groups coming at one time. This reduces the possibility of too much stimulation. Alternate between the radio and television at moderate volumes. Play familiar, but calming music at moderate volume. Loud noises may overwhelm the survivor. Speak of familiar people, places, interests and experiences. Take the patient outside when and where possible. Provide different tactile items for the survivor to hold (ice, a furry stuffed animal, course wool, flannel, satin, coffee beans, etc.)
Help avoid frustration.
Too much stimulation can be very frustrating for the survivor. Recognize that stimulation is needed and provide that stimulation in moderate doses. Please remember that the survivor is thinking with much slower speed and deficits may be so pervasive that the survivor must constantly think of things that others take as automatic. Avoid concurrent speakers. Avoid too much television. If the survivor experiences too much stimulation, he/she may “shut down” or “short circuit”. Other reactions are crying, combative behaviors or “explosive” episodes. If this happens, a quiet environment and rest is very helpful. Try to maintain a calm demeanor and be matter-of-fact and non-judgmental toward the survivor.
This can be extremely difficult for family members. Please, take care of you. Take a break, take a walk, find a quiet place for yourself and rest. Keep the conversation simple.
Simple means uncomplicated, not simple-minded. Please, do not be condescending. Conversation is important to the survivor. Even if he/she is unable to speak, try to keep the social environment as normal as possible. Speak clearly, at a normal tone and volume, and at a normal speed. It may take the survivor more time than usual to process and respond to the conversation. Use short simple sentences. Allow extra time for the survivor to speak. Present one idea at a time. Try to include your survivor in every conversation. Don’t talk down to the survivor; don’t talk at him/her; don’t talk about him/her as if he/she is not in the same room. Remember to look at the survivor when speaking with him/her. The survivor is entitled to every spoken and unspoken sign of respect. Affirming questions are better than negative ones: “Would you like a drink?” rather than “Don’t you want a drink?” Ask simple questions, not questions that require a choice: “Are you tired?” rather than “Would you like to nap or watch television?” Encourage him/her to use appropriate greetings and conversation.
Do not tease, encourage or scold the survivor who responds inappropriately. Speaking may be incredibly difficult. Allow him/her to search for the word he/she wants. Give encouragement and praise if the survivor is successful. Supply the word if frustration is apparent. It is better to give the word than to have the survivor practice mistakes. Support and encourage the survivor’s speech efforts. If he/she begins “I want to…” then seems to loose his/her place in the conversation, repeat the spoken phrase to help him/her remember. Ask the survivor to name things immediately near them; sometimes the survivor will have to repeat after you. Point to familiar objects when you do this: “a glass of water” while pointing to the glass. If the survivor rambles or meaninglessly repeats a word or phrase, gently redirect attention to another activity. Avoid making an issue of this repetition. Please remember that difficulty finding a word does not mean the survivor has lost intelligence. Do not put the survivor on display. “Say it for them” or “show them how you walk” can cause great embarrassment and frustration if the survivor fails at the desired task. Do not ridicule the survivor or show impatience with inaccurate responses or pronunciation. Do not insist that he/she “talk right”. No one wants that more than the person who can’t do it.
Ask direct questions that require a “yes” or “no” answer. Be prepared for bizarre, inappropriate language or swearing. This is not uncommon and should be accepted without anger or amusement. Don’t estimate the survivor’s ability to understand: ask if he/she understands. Don’t speak for the survivor unless absolutely necessary. The survivor has a very concrete frame of reference and will take what is said literally. “I’ll be back in a minute,” means exactly that to the survivor: one minute. Sarcasm and abstractions are lost on the survivor, and may cause deep frustration. Calm, matter-of-fact, real world conversations are best.
Stay in the real world, the real time. Do not join in fantasies or repetitions. Maintain a respectful, matter-of-fact tone of voice and attitude if the survivor engages in imaginary talk. Validate and gently correct the survivor: “You may think you see Mom in that chair, but I do not see her. She is in Pueblo.” Tell the survivor he/she is repeating him/herself, but speak in a matter-of-fact way.
Tools or strategies to Increase Independence for persons with Brain injuries
The list below is intended to give survivors and family members a sampling of compensatory techniques available to assist with challenges in memory and executive functioning.
- Conserve energy.
- Write appointments in a daily planner.
- Prioritize, schedule priorities.
- Color code files by topic.
- Keep a pad and pencil near the bed.
- Use checklist, timers and alarms.
- Use phone logs to track calls.
- Book an appointment with self to recharge battery and seek clarification that information is correct. Have a consistent routine.
- Double-check work.
- Allow for additional time if needed.
- Pace yourself.
- Avoid talking too much.
- Be on time.
- Be orderly to increase proficiency. Clutter impedes and slows efficiency.
- Use gestures to enhance speech.
- Minimize distractions.
- Ask for repetition of instructions, repeat them aloud.
- Ensure that necessary aids are available at all times. (resource notebook, glasses, etc.)
- Encourage participation in activities that nurture the soul.
References: Law, 1997, Brown, 1990 Covey, 1989, Lash and Osberg, 1999, Haddow, Hyde, Hague & Rastok, 1999, and Brown & Dudly, 1989
These suggestions may seem to be common sense, but they are critical in the home of a recently brain injured person. The individual with the recent brain injury may have problems with perception, balance, awareness and any of his/her senses, as well as problem solving difficulties. The survivor may not realize how much he/she has changed. He/she may deny that there has been any change.
The purpose of this information is the prevention of unnecessary second injuries. An individual who has suffered a brain injury is at greater risk for another.
- Electrical cords should run along baseboards or behind furniture. They should not run under rugs, or have furniture placed on the cord. Extension cords should not be used unless absolutely necessary and should be out of the way to prevent tripping over them.
- Emergency phone numbers should be posted on or near the phone; they should be large enough and bright enough for the survivor to easily see. Phones should be within easy reach for the survivor.
- Smoke alarms throughout the house are a necessity, doubly so if the survivor is a smoker. Short-term memory impairment is one of The most common manifestations of the injury. The survivor may not remember that he/she lit a cigarette and just walk away.
- Kitchen activities may require close supervision. Again, short-term memory is often affected. The survivor, who then goes on to do something else with no memory of the unfinished task, may start a meal on the stove.
- Space heaters, wood stoves and kerosene heaters require extra care and attention. Be sure they are away from all combustibles. Insure adequate ventilation. Read all safety instructions carefully and completely. If heating the house with these devices was previously the responsibility of the survivor, ask a neighbor to help you learn this new skill or do without them until the survivor has progressed in rehabilitation so as to be safe.
- Stepping stools should be removed from the kitchen. The survivor may have balance or coordination difficulties that make it dangerous to climb for an overhead item or cabinet.
- Rugs that are not securely anchored or don’t have a non-skid backing should be removed to limit potential problems for the balance-challenged survivor.
- Stairs and other ‘traffic’ areas should be free of clutter. Remove unnecessary furniture and other objects that may be obstacles for the survivor who is experiencing balance, gait or walking difficulties.
- Bathrooms provide special challenges for the person trying to make the home safe for the brain injury survivor.
- A ground fault interrupt circuit (gfi circuit) provides great electrical safety around water. The survivor may have memory or judgment deficits that make use of electricity around water dangerous.
- Towel hooks and rods help with clutter on the floor and decrease the chance of tripping over towels, robes and clothes.
Tubs and showers should have a non-skid surface.
- Grab-bars in showers or tubs are a more permanent safety device.
- A portable tub or shower chair provides a stable, safe platform for bathing. These are portable and can be easily removed for other family members’ use of the bath.
- Hot water temperature is an oft-forgotten hazard for the brain injured. There may be a disturbance in the individual’s ability to sense temperature; they are at risk for scalding. Adjust the temperature on the hot water heater to “low” or 120 degrees. Check the temperature on their morning coffee, tea or cocoa.
- Vision may be blurred, double or otherwise disturbed.
- Provide adequate lighting in halls, stairs and where one works or reads. Make sure that the proper wattage is used in light bulbs you replace. Turn the fixture off before a bulb is replaced.
- Secure handrails are necessary on stairs.
- Electric blankets and heating pads are dangerous if the survivor has difficulty-sensing temperature. Consider using a thermal blanket instead of an electric one.
- Power tools can be a danger. Supervise and check frequently until you are absolutely sure there will not be a problem. Impatience, intolerance of problems and forgetfulness may all be manifestations of brain injury, and may lead to further injury.
- Lock up tools that are not used safely. Always be sure of adequate electrical service and cords and grounded plugs. Adequate lighting is crucial as well as a clean, uncluttered and organized workspace.
- Lawn mowers, trimmers, snow blowers and Bar-B-Q’s require careful supervision and should not be used until a competent, non-brain injured individual assesses the safety capabilities of both tool and user.