Strategies for Assisting People with Traumatic Brain Injuries

This information is available in PDF format upon request.

Adkins, K. (1999). Strategies for assisting people with traumatic brain injuries.

Lawrence, KS: The Research and Training Center on Independent Living, University of Kansas.

Preface

The purpose of this manual, Strategies for Assisting People with Traumatic Brain Injuries, is to provide a user-friendly guide for individuals assisting people with traumatic brain injuries in home and independent living center environments. It is not meant to replace the many fine books on the subject of traumatic brain injury; rather, our purpose is to provide a concise outline of some of the more challenging behaviors that may result from traumatic brain injury. Our hope is that this format will easily help both those assisting as well as persons experiencing challenging behavior. Each segment will begin with the challenging behavior and its description, followed by behaviors the helper should avoid in the second column, and ways the helper can help manage the challenge in the third column.

Although this is by no means a definitive guide to treatment, it is our hope that this manual will provide a quick reference for challenging behaviors as they arise, and a possible starting point for further reading.

In keeping with the spirit pioneered by the Research and Training Center on Independent Living (RTC/IL) at the University of Kansas that has emphasized the primacy of the person above other defining variables, such as a disability, the person with a traumatic brain injury from this point on in this manual will be referred to simply as "the person."

Vincent K. Adkins University of Kansas

This publication was funded by the National Institute of Disability Rehabilitation Research as part of the Research and Training Center on Full Participation, a division of The Research and Training Center

on Independent Living (RTC/IL), The University of Kansas, Room 4089 Dole Center, 1000 Sunnyside Avenue, Lawrence, KS 66045-7555, Voice: (785) 864-4095,

TTY: (785) 864-0706, Fax: (785) 864-5063.

Instructing and Working With a Person with Brain Injury

Because of frustration, fatigue, and learning deficits, working with a person can be difficult even for the most experienced trainers and teachers.

For example, don’t begin instruction unless the person understands it will lead to his or her goals, and don’t offer instructions without first making sure the goals are presented as clearly and simply as possible. Also, stick to a routine and keep the time and place of instruction the same.

It’s helpful to have frequent rest periods, such as five minutes for every ten minutes worked. Be flexible. Organize projects into steps. Offer verbal prompts (“That’s right.”). Always praise success. When the person is not successful, simply offer to start again. Don’t say “no” or “wrong.” If the person is having trouble, break steps into even more steps until the person has success. Keep a log where each step can be checked off. When all steps are done, offer congratulations. Ask whether the person wants to move to a new task. If that proves premature, return to the previous task.

It’s a challenge, but goals must be set as having a plan with desired results will help with motivation and planning. Long-term goals are usually set first. Once done, establish short-term goals, such as specific job-related skills.

Take into account variables, such as the time from which the injury occurred. For example, basic skills may have to be relearned or behavior changed. Regularly determine and review goals with the person, family, and team.

Don’t set goals without the person’s input. Don’t encourage unrealistic goals held by the person. Rather listen to and build on the person’s wishes. This may require learning skills in a multi-step process and refering back to the process leading to the goals.

On the following pages are suggestions for dealing with certain situations that may arise when instructing a perosn with a traumatic brain injury.

Denial

CHALLENGE: Denial is a common feature of brain injury. Often a person doesn’t want to recognize the changes resulting from a brain injury. Keep in mind, too, that the effects of the brain injury itself can cause some people to be unrealistic and not understand the problems they’re facing.

WHAT NOT TO DO: Don’t insist that all problems and shortcomings from the brain injury be recognized. Again, denial may be part of the brain injury effects, so the person may not understand a problem being discussed.

WHAT TO DO: Emphasize the consequences of actions. For example, if a person plans to resume working, bring up the need to still participate fully in physical therapy. Offer encouragement when a person is dwelling on the limitations caused by the brain injury. Don’t minimize grief, but don’t encourage it. Talk about progress made since the accident if a person is dwelling on loss.

Apathy

CHALLENGE: Apathy may stem from denial. It may also be a person’s protection from attempting something that could result in failure. Then again, apathy could have a physical origin and come from frontal lobe damage.

WHAT NOT TO DO: Don’t insist that tasks be accomplished all at once. Instead, break tasks into pieces. Don’t scold or accuse someone of being lazy. Discourage “giving up.” Rather have the person do something he or she is good at, then offer an immediate reward for success. Don’t have the person perform more than one task at a time.

WHAT TO DO: Break large tasks into smaller tasks. Plan how many steps a person can do before growing tired or indifferent. For reinforcement, praise each accomplishment.

Keep a record of progress. Before beginning a task, explain that you know it may be difficult, but that it must be done for the person to reach a goal. If the person has no immediate goals, explain that everyone has unpleasant tasks.

Confusion

CHALLENGE: As a result of the brain injury, a person can’t handle as much information as before. Also, attention spans are shorter, which may increase confusion.

WHAT NOT TO DO: Don’t let the environment get hectic or too fast-paced. Don’t let the person get in a situation where he or she has to do or learn more than one thing at a time.

WHAT TO DO: Limit or eliminate noise and other distractions, such as television or music. Provide enough time to learn or accomplish a task.

Verbosity

CHALLENGE: Rambling talk may occur when a person feels he or she is unable to organize thoughts well enough.

WHAT NOT TO DO: Don’t tune out the person. Don’t accuse the person of attempting to dominate conversation.

WHAT TO DO: Say, “I’m listening to you, but I am having a hard time understanding what you are saying.” Repeat a key phrase from where the person began the conversation OR from the point you became lost.

Say what you think the person said. Be truthful. Tell the person if you didn’t understand how one conversation topic links to another.

Confabulation

CHALLENGE: Because of confusion or forgetfulness, a person may say something that is partly or completely false.

WHAT NOT TO DO: Don’t humor the person by seeming to accept the falsehood as truth. Don’t call the person a "liar" or any other negative label.

WHAT TO DO: Try to point out that the statement is false, because you know otherwise. Also, go over the situation being discussed and give your version of what did and didn’t happen. Remind the person the misunderstanding may be based on the brain injury.

Emotional Ups and Downs

CHALLENGE: Damage to the limbic system or frontal lobe may result in roller coaster emotions. A person may shift from high to low suddenly, cry excessively, laugh inappropriately, or display other intense, sudden emotions.

WHAT NOT TO DO: Don’t over-react. This emotional state upsets the individual, too. Don’t analyze the source of distress. Don’t humor the person.

WHAT TO DO: Be calm. Speak in a soothing voice. Recognize the person may be embarrassed by the extreme loss of control. Discuss ways to draw attention from the situation (such as exiting to a restroom).

Memory Function

CHALLENGE: A person may not be able to recall personal events, general knowledge, or skills. The person may also not be able to acquire new knowledge or recall information recently presented.

WHAT NOT TO DO: Don’t get angry or insist that something be remembered. Don’t become impatient. Don’t expect the person to remember recent information.

WHAT TO DO: Realize that even the most important memories may be forgotten. Allow as much time as needed to learn. Be aware that information you just presented may be forgotten. Keep in mind there are many ways to acquire knowledge. Set up a daily schedule to make life routine and predictable. Use other people as reminders. For example, the doctor’s office might call the day before an appointment as a reminder.

Use devices, such as a tape recorder, to record information needed later.

Verbal Aggression

CHALLENGE: Be prepared for verbal outbursts, anger, and accusations that don’t fit the occasion.

WHAT NOT TO DO: Don’t respond in the same manner. Don’t try to calm the person. Don’t take the outbursts too seriously, because they are typically the result of brain injury.

WHAT TO DO: Remove the person from the situation that caused the outbursts. Look for triggers such as fatigue or pain that may have set off the person. Attempts to calm a person may only increase agitation or actually reinforce the behavior. Educate others that this is how people with a brain injury may behave and to follow your example.

Because the person is sometimes quite apologetic after an outburst, use the opportunity to instruct them in better ways to handle anger and frustration. For instance, if a task is demanding, take a rest break. If a place is too noisy, leave.

Physical Aggression

CHALLENGE: Often a person may hit, kick, pull hair, throw objects, or assault people in other ways.

WHAT NOT TO DO: Don’t stand over or corner the person because it may cause them to feel or perceive threat. Avoid eye contact and conversation during physical aggression. Avoid making the person feel out-numbered by surrounding him/her with other people during an outburst.

WHAT TO DO: Develop a time-out room and procedure when aggression occurs. A person often is distressed after the event. Use this time to discuss positive strategies to deal with anger. One method described by W. McKinlay and A. Hickox in How Can Families Help in the Rehabilitation of the Head Injured? (Journal of Head Trauma and Rehabilitation, 3, 64-72) is:

ANGER:

A: Anticipate the trigger situation.

N: Notice the signs of rising anger.

G: Go through your "temper routine" (which includes relaxation exercises, breathing exercises, and finding an alternative way of handling the situation).

E: Extract yourself from the situation, if all else fails.

R: Record how you coped: What lessons can you learn for the next time?

Sexual Disinhibition

CHALLENGE: By the nature of the disability or treatment center, some individuals are sexually frustrated. This frustration may be expressed inappropriately.

WHAT NOT TO DO: Don’t take the sexual advance personally. Don’t become embarrassed or angry.

WHAT TO DO: At the first sexual advance, tell the person quietly and firmly that the action is not appropriate while continuing what you were doing. If it happens again, ignore the behavior completely. Respond to correct behaviors with attention and praise. Acknowledge that the person has sexual needs similar to everyone else.

Self-Centeredness

CHALLENGE: Associated with this condition are demanding, attention-seeking, and manipulative behaviors, including jealousy and failure to see others’ points of view.

WHAT NOT TO DO: Don’t threaten or bargain. Don’t attempt to react in a helpful manner to attention-seeking behavior.

WHAT TO DO: Staff and family should set firm rules and stick with them. Total dependency on one person should be discouraged. Ignore attention-seeking behaviors (i.e., joking, swearing)