Head injury survivors may experience a range of neuropsychological problems following a traumatic brain injury. Depending on the part of the brain affected and the severity of the injury, the result on any one individual can vary greatly. Personality changes, memory and judgement deficits, lack of impulse control, and poor concentration are all common. Behavioral changes can be stressful for families and caregivers who must learn to adapt their communication techniques, established relationships, and expectations of what the impaired person can or cannot do.
In some cases extended cognitive and behavioral rehabilitation in a residential or outpatient setting will be necessary to regain certain skills. A neuropsychologist also may be helpful in assessing cognitive deficits. However, over the long term both the survivor and any involved family members will need to explore what combination of strategies work best to improve the functional and behavioral skills of the impaired individual.
Even a person who makes a “good” recovery may go through some personality changes. Family members must be careful to avoid always comparing the impaired person with the way he/she “used to be.” Personality changes are often an exaggeration of the person's pre-injury personality in which personality traits become intensified. Some changes can be quite striking. It may be, for example, the head injury survivor used to be easy going, energetic, and thoughtful and now seems easily angered, self-absorbed, and unable to show enthusiasm for anything. Nonetheless, try not to criticize or make fun of the impaired person’s deficits. This is sure to make the person feel frustrated, angry, or embarrassed.
Head injury survivors may experience short-term problems and/or amnesia related to certain periods of time. Generally, new learning presents the greatest challenge to memory or remembering. In contrast, pre-injury knowledge is more easily retained.
The ability to focus and concentrate are keys to addressing some short-term memory problems.
Keep distractions (e.g., music, noise) to a minimum and focus on one task at a time.
Have the individual repeat the name of a person or object, after you, if memory impairment is severe.
Whenever possible, have the person write down key information (e.g., appointments, phone messages, list of chores).
Keep to routines. Keep household objects in the same place. Use the same route to walk to the mail box or bus stop.
If getting lost is a problem, you can label doors or color code doors inside the house or hang arrows to indicate directions. When going out, the person should be accompanied initially to ensure the route is understood. A simple map can be sketched from the bus stop to the house. And make sure that the person always carries his/her address and emergency phone numbers.
A structured environment can be essential in helping a head injury survivor relearn basic skills. A written routine schedule of activities and repetition make it easier to remember what’s expected and what to do next.
After a head injury a person may lack emotional responses such as smiling, laughing, crying, anger, or enthusiasm or their responses may be inappropriate. This may be especially present during the earlier stages of recovery.
Recognize that this is part of the injury. Try not to take it personally if the person does not show an appropriate response.
Encourage the person to recognize your smile at a humorous situation (or tears if you are sad) and to take note of the proper response.
In some cases, neurological damage after a head injury may cause emotional volatility (intense mood swings or extreme reactions to everyday situations). Such overreactions could be sudden tears, angry outbursts, or laughter. It is important to understand that the person has lost some degree of control over emotional responses. The key to handling lability is recognizing that the behavior is unintentional. Caregivers should model calm behavior and try not to provoke further stress by being overly critical. Help the person recognize when his/her emotional responses are under control and support/reinforce techniques that work.
Provided a situation does not present a physical threat, various approaches may be used to diffuse hostile behavior:
Remain as calm as you can; ignore the behavior.
Try to change the person’s mood by agreeing with the person (if appropriate) and thus avoiding an argument. Show extra affection and support to address underlying frustrations.
Validate the emotion by identifying the feelings and letting the person know these feelings are legitimate. Frustration over the loss of functional and/or cognitive abilities can reasonably provoke anger.
Do not challenge or confront the person. Rather, negotiate (e.g., if you don’t like what’s planned for dinner tonight, how about choosing Friday’s menu?).
Offer alternative ways to express anger (e.g., a punching bag, a gripe list).
Try to understand the source of the anger. Is there a way to address the person’s need/frustration? (e.g., make a phone call, choose an alternative activity).
Help the person regain a sense of control by asking if there is anything that would help him/her feel better.
Isolate the disruptive impaired person. Consider you own safety and his/hers. Treat each incident as an isolated occurrence as the survivor may not remember having acted this way before or may need to be prompted to remember. Try to establish consistent, non-confrontational responses from all family members (children may need to learn some “dos” and “don’ts” in reacting to the survivor).
Seek support for yourself as a caregiver. Support groups, professional counselors, and, if necessary, protective services or law enforcement may be contacted.
The person who has survived a head injury may lack empathy. That is, some head injury survivors have difficulty seeing things through someone else's eyes. The result can be thoughtless or hurtful remarks or unreasonable, demanding requests. This behavior stems from a lack of abstract thinking.
Help cue the person to recognize thoughtlessness. Remind him/her to practice polite behavior. Realize that awareness of other people's feelings may have to be relearned.
“Cueing” or reminders can be helpful in improving concentration and attention. Repeat the question. Don’t give too much information at once, and check to see that the person is not tired.
Head injury survivors should be encouraged to develop self-checks by asking themselves questions such as “Did I understand everything?”, “Did I write it down?”, “Is this what I’m supposed to be doing?”. “I made a mistake” or “I’m not sure” should lead to the conclusion, “let me slow down and concentrate so I can correct the error”. Correct actions should be consciously praised, “I did a good job”.
It is relatively common for a head injury survivor to be unaware of his/her deficits. Remember that this is a part of the neurological damage and not just obstinance. Be aware, however, that denial can also be a coping mechanism to conceal the fear that he/she cannot do a particular task. The person may insist that the activity cannot be done or is “stupid.”
Build self-esteem by encouraging the person to try a (non-dangerous) activity that he/she feels confident doing.
Give the person visual and verbal reminders or “hints” (e.g., a smile or the words "good job") to improve confidence in carrying out basic activities more independently.
If you feel the person can handle confrontation, challenge him/her to try the activity. Demonstrate that you can do the task easily.
After a head injury, a person may experience either increased or decreased interest in sex. The causes could be a result of brain regulation of hormonal activity or an emotional response to the injury.
Sexual disinterest from a head injured spouse should not be taken personally. Avoiding sexual contact could stem from fear or embarrassment about potential performance. Do not pressure the person to resume sexual activity before he/she is ready. Helping the person dress nicely and practice good hygiene may help increase his/her confidence in feeling attractive.
Increased sexual interest can be particularly stressful and embarrassing to families and caregivers. Without good impulse control, the survivor may make crude remarks out in public, make a pass at a married friend, try to touch someone in an inappropriate setting, or demand sexual attention from a spouse or significant other.
It is important to remind the person that the behavior is not acceptable.
A spouse should not feel pressured into submitting to sexual demands which are unwanted.
A sexually aggressive person may need to be isolated from others where inappropriate behavior is not controlled. A call for help may be necessary, if physical threats are made.
Support groups may be useful in helping the person realize the consequences of inappropriate sexual behaviors.
Coping with behavior problems after a head injury requires identification and acknowledgment of the impaired individual’s deficits. A comprehensive neuropsychological assessment is recommended. This may help both the survivor and the family to better understand neurological and cognitive deficits.
In some cases, it may be easier for the family caregiver to recognize personality changes than to resolve the problem behavior. Targeted strategies may be used to deal with specific behavioral issues.
Finally, it is critical that family members seek and receive support (family, friends, support group, counselor) in dealing with their own emotional responses to caring for a head injured loved one.
Burke, William, H. et al. (1988). HDI Professional Series on Traumatic Brain Injury, HDI Publishers, Galvaston, TX.
San Jose Chapter Pi Lamda Theta (1983). Helping Head Injury and Stroke Patients at Home: A Handbook for Families, San Jose, CA.
Eames, P. (1988). Behavior disorders after severe brain injury: their nature and causes and strategies for management, Journal of Head Trauma Rehabilitation 3(3), 1-6.
DeBoskey, D. and Morin, K., (1985). A “How to Handle” Manual for Families of the Brain Injured, Tampa General Hospital, Tampa, FL.
Therapeutic Fun for Head Injured Persons and Their Families, Sally Kneipp (ed) 1988, Community Skills Program, c/o Counseling and Rehabilitation, Inc., 1616 Walnut St., #800, Philadelphia, PA 19103.
Professional Series and Coping Series, HDI Publishers, PO Box 131401, Houston, TX 77219. (800) 321-7037.
Head Injury Peer Support Group Training Manual, Family Caregiver Alliance (1993): San Francisco, CA.
Head Injury and the Family: A Life and Living Perspective, Arthur Dell Orto and Paul Power (1994) GR Press, 6959 University Blvd., Winter Park, FL 32193. (800) 438-5911.
Awake Again, Martin Krieg (1994), WRS Publishing, available from the author: P.O. Box 3346, Santa Cruz, CA 95063. (408) 426-8830.
Family Caregiver Alliance (FCA) seeks to improve the quality of life for caregivers through education, services, research and advocacy.
Through its National Center on Caregiving, FCA offers information on current social, public policy and caregiving issues and provides assistance in the development of public and private programs for caregivers.
For residents of the greater San Francisco Bay Area, FCA provides direct family support services for caregivers of those with Alzheimer's disease, stroke, head injury, Parkinson's and other debilitating disorders that strike adults.
Brain Injury Association of America
105 North Alfred Street
Alexandria, VA 22314
(specializing in computer programs for cognitive retraining)
727 Twinridge Lane
North Chesterfield, VA 23235
American Academy of Clinical Neuropsychology
Department of Psychiatry (F6248, MCHC-6)
University of Michigan Health System
1500 East Medical Center Drive, SPC 5295
Ann Arbor, MI 48109-5295
Reviewed by: Claude Munday, Ph.D., Neurospychology Associates of the Bay Area; William Lynch, Ph.D., Director of Brain Injury Rehabilitation Unit, Outpatient Program, Department of Veteran Affairs, Palo Alto, CA; and John Haller, Traumatic Brain and Spinal Cord Injury Project, San Jose, CA.
Prepared by Family Caregiver Alliance in cooperation with California's Caregiver Resource Centers, a statewide system of resource centers serving families and caregivers of brain-impaired adults. Revised July 1996. Funded by the California Department of Mental Health. ©All rights reserved.