Practical issues in working with the head injured.
Although there is considerable variability in the site of impact and the severity of any head injury, there is a remarkable consistency in terms of the effects on the brain. The injury tends to be widespread, but it particularly affects the frontal and temporal lobes of the brain, with consequent changes in thinking, behavior and personality. The aim of this paper is to discuss some of the most common changes seen and make some suggestions as to how they might best be handled. There is, of course, no absolutely right or wrong way to handle any person or situation, but these suggestions are based on our experience in working with head injured and their families at Bethesda Hospital. Any or all of these problems may occur to varying degrees. Some of them may not occur at all. The ways in which they manifest themselves will also depend on the previous personality of the head- injured person, which can interact in the effects of the injuries.
l. Lack of Insight
This is probably the most difficult problem to deal with. Head-injured people, whilst usually able to recognize physical disabilities have great difficulty in seeing and accepting changes in thinking and behavior. Because of this it is necessary to provide frequent clear and simple explanations of why a problem is being treated or why the head - injured person is unable to do something. However, it is important not to belabor the point. If the head-injured person continues to deny or rationalize the presence of these problems after a clear explanation, it is probably better to change the subject. It is not a good idea to try to argue with or try to reason with him/her. It will only make both of you upset and agitated. After all, the head-injured person will unfortunately, sooner or later, be faced with the everyday consequences of his/her problems.
Discussions with other head-injured people in a group setting can be helpful. Often it is more meaningful to hear about changes in yourself from your peers or, further down the track, from your employer. Most head-injured people do eventually gain at least some degree of insight into their problems.
2. Memory Problems
One of the most common cognitive deficits seen is a poor memory. There may be problems in remembering people's names, appointments, passing on messages or phone calls, or remembering details read in a book or newspaper. There may be a tendency to forget where things have been put, or to get lost around the streets. In therapy the head- injured may forget what they are doing from one session to the next. We all have these difficulties to some degree, but they are often more pronounced after a head injury.
The first point which needs to be made in relation to dealing with these problems is that, whilst memory problems may resolve as the brain recovers, it is not possible to cure a memory problem by, for example, giving repeated practice on memory tasks. It is better to tackle the problem by developing ways of compensating for it and thereby minimizing its impact on the life of the head-injured person. Have them always carry a notebook and write down important names, addresses, telephone numbers and things that have to be done. They can also record details of how to get from one place to another. Therapists, families, friends, employers and attendant carers can help the head injured by reminding them to writes things in their notebook and refer to it regularly. They can also help them record important details clearly. It is helpful to have bulletin boards and calendars placed strategically. Have a designated place for important items in the home and keep a list of where things are kept. One should also avoid relying on a head-injured person to remember things. Repeat instructions or details at every opportunity. Write them down clearly and see that they are readily available for the head-injured person to refer to. By doing these things, we can certainly minimize the impact of a memory problem.
3. Poor Concentration
Head-injured people have a tendency to lose concentration or be distracted easily from what they are doing. They often complain of being bored, and don't enjoy activities such as reading any longer. This is usually because they are having difficulty concentrating. Again, it is not possible to cure this problem, but there are ways we can help head-injured people to cope with it. We can try to control the environrnent at home, at work or in the therapy setting so that it is free from distractions, such as activities into short bursts, allowing regular breaks. Set realistic goals as far as reading is concerned. It may be easier to read magazines or short stories now rather than books. Hobbies that were once enjoyable may no longer hold the head-injured person's interest. Try to engage him/her in activities which require less concentration. It may be better to focus more on physical types of activities, such as walking or working in the garden.
4. Slowed Responses
The head-injured tend to be slow to answer questions or to perform tasks and they may have difficulty keeping up in conversation. Their capacity to respond quickly in an emergency may also be lost. We can help them by allowing more time to respond and to complete tasks. An understanding employer may be willing to modify the work situation so that the same productivity or speed or response is not required. It is also vital that we avoid letting the head- injured get into situations where they may be at risk by virtue of their slowed responses. This is one reason why many head-injured people are not allowed to drive. There may also be a need for careful supervision in the home for the same reason.
5. Poor Planning and Problem Solving
Head-injured people frequently have difficulty solving problems and planning and organizing things they have to do. It is helpful for them of others can break down the problem, stating clearly each step required in solving it and making sure they have considered all alternatives. Don't expect open-ended decision-making. It is easier if you give the head-injured person several concrete solutions from which to choose.
One of the reasons the head-injured person doesn't accomplish much is that they just don't know where to start. You can help by structuring complex tasks in a step-by-step fashion. It is frequently helpful, in fact, if the whole day is structured in this way and written in a notebook. Have them tick off each step as it is accomplished. This helps overcome problems with memory and initiative, as well as planning. Therapy tasks should also be broken down into short steps, as may tasks in the work situation.
6. Lack of Initiative
The head injured tend to lack initiative. In spite of all good intentions they may sit around at home all day long and watch TV. If the problem is severe they may need prompting just to have a shower and get dressed or to participate in conversation. At a more subtle level we may see that they no longer ring up friends as they used to, or when they have completed a task at work they don't come and ask for another. This problem may be helped by carefully structuring the head-injured person's day to avoid long periods of inactivity. Don't rely on them to take initiative. Give them a written daily schedule which sets out everything they have to do in a step-by-step fashion. An alarm watch or timer may be used to prompt them to refer to this. Such a schedule is far preferable to constant nagging from a frustrated wife or an angry employer. Above all, remember lack of initiative is not laziness - it is a result of the head injury.
7. Flexibility
Head-injured people can be very inflexible in their thinking. They can't always change their train of thought, so they may tend to repeat themselves of they may have difficulty seeing other people's points of view. They may not cope very well with sudden changes in routine. It is best to ignore it when the head-injured person repeats themselves. Listen to them once, but don't reinforce any further repetition. Try to avoid sudden changes in routine; certainly try to give as much warning and explanation as you can. This will minimize his/her agitation.
8. Impulsivity
Head-injured people can be very impulsive because they have lost the filtering system or control that makes you stop and think before jumping in. This often leads to silly mistakes, potentially dangerous ones, and it can lead to social embarrassment. Avoid putting head-injured people into situations where their impulsive behavior may place them in danger; they may need supervision when crossing roads, for example. The work environment will also need to minimize such dangers. It may also be helpful to cue the head-injured person to slow down, to think before he/she acts. You might also set short term rewards for brief periods of self-control (e.g. spacing cigarettes to decrease smoking). This problem, and the next few, reflects an inability to control and monitor behavior to the frontal lobes of the frontal lobes of the brain, which are responsible for maintaining such control.
9. Irritability / Temper Outbursts
Head-injured people tend to have a low tolerance for frustration. If kept waiting for an appointment they may become agitated and walk out. If their children are making a lot of noise they may become very angry. Head-injured people are generally prone to become irritable and to lose their temper easily. Often their anger may be completely out of proportion to the situation. The first and most important thing to remember when dealing with these problems, is that they are the result of the brain injury. The head-injured person cannot always help it and therefore does not deserve to be blamed. Try not to take angry words personally. In all instances just ignore the outburst. If it is possible, remove him/her from the situation, that provoked the anger, leave the room yourself or change the subject. It is frequently possible to identify the kinds of things that cause the head-injured person to become agitated and try and avoid getting into such situations again. When the head-injured person has calmed down, they are frequently very apologetic. Use this as a chance to gently suggest better ways of dealing with the situation next time, and to let him/her know that you are willing to help. Don't be critical and don't hold grudges. This can be incredibly hard, especially if this is your wife or husband. You need to have someone else with whom you can let off your steam. If young children are involved, help them recognize and avoid behavior that can provoke outbursts. Educate all family members, friends and fellow employees to react consistently when the head-injured person becomes irritable or aggressive.
10. Talking Excessively
Another consequence of poor self-monitoring due to frontal lobe injury can be a tendency to talk excessively. It is hest not to confront this problem too aggressively, but be assertive in changing the subject and letting him/her know that they have already said that and/or that you have something else to move on to. Above all, try to respond consistently to this problem.
11. Socially Inappropriate Behavior
Head-injured people can have difficulty in judging the best way to behave in social situations. They may walk up to strangers and start telling them about their accident, they may be over familiar with therapists or they may proposition girls they've never met before. It may be helpful to the head-injured person if families can provide some coaching before social events. "Don't talk about your injury" or "Don't make suggestive comments to girls". Once in the situation never reinforce the inappropriate behavior by responding to it or trying to cover it up. It is best to ignore it. If necessary, indicate your dissatisfaction in a quiet and non-threatening manner by saying "This is not the place for that" or "Don't talk about that here". If inappropriate sexual comments or advances are made towards you, try not to react, try not to react. Just quietly let them know you don't like it and change the subject or walk away. However, it is also important for the head-injured to have outlets for their sexual frustrations.
12. Self Centeredness
Head - injured people tend to be self-centered. They can be very demanding and fail to see other people's point of view. They can become jealous when, for example, their wife pays attention to the children, or wants to go to her usual Wednesday night bridge club. It is very important not to let the head-injured person come to expect that all his/her demands will be met. On the other hand, don't expect him/her demands will be met. On the other hand, don't expect him/her to respect your rights - you may have to do some demanding of your own. Certainly, any person dealing with the head-injured need to be firm and set clearly-stated limits. It is not fair to expect the head-injured person to judge these for himself.
13.Dependency
One of the consequences of self-centeredness, combined with lack of initiative and difficulty in coping with social situations, is a tendency for the head-injured to become very dependent on their parents, spouse, other family members or attendant care. It is important to try not to let yourself become a head-injured person's only friend. Try to explore every avenue to provide opportunities to make friends, although it is best to add new people one at a time, rather than push him/her into situations where there are many strangers around. This can be very overwhelming. Head injury support groups, such as those run by Headway can be ideal opportunities for the head-injured to begin to develop a new group of friends to whom the head-injured person responsibility for as much as he/she can possibly manage. Try no to be overprotective. This often involves taking risks, but it is usually worth it.
14. Emotional Liability
Just as they have difficulty controlling their behavior at times, the head-injured may also have difficulty in controlling their emotions. They may cry too much too often or laugh too much at inappropriate times. This can be embarrassing. He/she might for example, laugh hysterically at something that he/she thought was funny when no one else around is doing more than smiling. He/she might begin to cry when talking about the accident to other people. It is important to recognize that even though the response is overly dramatic, the underlying emotion may not be at all that strong. It is unnecessary to reassure the head- injured person that you understand. It is more appropriate to ignore the behavior when it occurs and model calm behavior yourself Praise him/her and point out those times when he/she does control his/her emotions.
15. Depression
Depression is a very common emotional consequence that usually comes some time after the injury. Actually, it is a sign of progress, since the head-injured person must now have developed more awareness of his/her cognitive and motor deficits in order to feel frustrated and depressed. Signs of depression include lack of motivation, sexual withdrawal, excessive TV watching and flatness of affect. Although head-injured people have difficulty in benefiting from counseling, it is definitely worth seeking help to deal with depression, especially if suicidal thoughts are expressed. (Therapy for depression needs to be concrete and task-oriented and requires a lot of repetition). Try to utilize diversionary tactics to get their minds off depressive thoughts. Try to make small goals and point it out when these are achieved. Try to get him/her involved in a daily exercise program and as many other structured activities as possible.
Final Comments
It is vital that you look after yourself if you are spending a lot of time with a head-injured person. Give yourself time off to enjoy yourself and relax. Otherwise you won't be able to sustain the help and support you are giving. Don't expect to solve all problems that arise. They are going to be there forever, but by maintaining consistency you can certainly minimize their impact. Above all, remember that head-injured people are adults who have the same ideals, expectations, aspirations and rights as the rest of us, and they deserve to be treated as such.
(A paper presented at the HEADWAY Victoria (Australia) Kaleidoscope Conference in October 1987. Reprinted by permission of HEADWAY, Victoria).
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