I have heard that a person who sustains a brain injury will experience a better outcome if he receives intensive rehabilitation in the first year of recovery. Can a person continue to make any significant progress after the first year? What about someone who does not receive rehabilitation in the first year -- how does this affect recovery?
If one assumes that the injury you are referring to was due to trauma without significant concurrent lack of oxygen or blood flow to the brain (also called hypoxic ischemic brain injury), then one would be in a situation where the answer to your question would depend on several different factors. Firstly, it is important to understand the type of brain injury that a person incurs in order to have a sense of what their neurologic recovery will look like relative to the time frame in which improvements are likely to occur. Specifically, primary brain injury is divided in to focal and diffuse brain damage. The more purely diffuse an injury is, the more likely it is that neurologic improvements will continue on an ongoing basis over several years whether or not an individual participates in intensive rehabilitation or any kind of rehabilitation during the first year post-injury. Inherent in this statement is the fact that persons, depending on the specifics of their injury, can certainly make significant improvements beyond one year post-injury. There is a significant amount of experience as well as research that demonstrates that persons with more purely diffuse brain injuries can continue to make improvements well into and potentially beyond the two to five year range post-injury. Predominantly focal injuries, on the other hand, seem to act much more like strokes in terms of their neurologic recovery course. Many of these patients generally show a plateau in neurologic recovery within the first year post-injury although this is certainly not written in stone and many other variables come into play in terms of affecting the ultimate neurologic recovery profile scene.
The exact role that rehabilitation plays in the rate of recovery is unclear at the present time. There is some research to support the idea that intensive rehabilitation may facilitate the rate of recovery but not necessarily the ultimate plateau. This is still an area of work that requires a lot of further research to answer in a more definitive fashion. From professional experience, I would state that complications which may be associated with the severe brain injury are at a much greater potential to be addressed in the context of the person being in an intensive rehabilitation program during their first year post-injury than not. Unfortunately, many individuals with severe brain injuries are "shipped off" to programs that are not adequately equipped to manage their cognitive, behavioral and/or physical problems. This leads to the potential for complications which then slow the patient’s overall recovery and potentially leads to significant morbidity if not mortality. It needs to be understood that much of the person’s neurologic recovery will occur regardless of whether a person is in a formalized rehabilitation program as there are multiple mechanisms by which "spontaneous improvement" occurs without any interventions. Certainly it has been the experience of most rehabilitationists that structured, medically sound, rehabilitation care can help diminish complications associated with significant brain injury, educate patients and families regarding compensatory strategies and adjustment to disability as well as facilitate community re-entry, among many other reasons for providing such intensive services. Much is to be learned, however, regarding the exact role of specific rehabilitation intervention and rehabilitation as a whole in terms of the effects that these measures have on ultimate neurologic plateau.
What is the role of the speech-language pathologist in traumatic brain injury rehabilitation?
The speech-language pathologist (SLP) serves a number of roles in the rehabilitation of the individual with traumatic brain injury. The SLP may meet the patient at any stage of recovery, from the intensive care unit through vocational re-training. Wherever the patient is in the recovery process, and SLP will typically (1) Evaluate: Evaluation of patients with TBI includes use of formal and/or standardized assessments, as well as informed/behavioral observation of language comprehension, language expression, pragmatic language (use of language in social situations), oral-motor function for speech and swallowing, gestural function and other areas. Evaluation is typically an ongoing process, in order to monitor the patient’s progress and make treatment adaptations; (2) Treat: When appropriate, treatment begins immediately, specific goals and objectives are developed for each patient, and are revised and updated according to the patient’s needs. Treatment decisions are functionally based in order to address those deficits that most impact the patient’s day-to-day communication function; (3) Educate: Patient and caregiver education is an essential and ongoing process for the SLP. General education regarding TBI, and cognitive-linguistic function is provided as well as specific education and training in the use of strategies designed to optimize function. Recommendations regarding environmental modifications or specific cueing methods for word retrieval are two examples of the ongoing educational process required in the rehabilitation of patients with TBI; (4) Communicate: The SLP regularly communicates with other members of the rehabilitation team in order to achieve an integrated treatment approach.
I have been advised to have a neuropsychological evaluation. What should I expect to occur during the evaluation? What will this evaluation tell me?
A neuropsychological evaluation is an extensive assessment procedure conducted by a clinical psychologist with special training in neuropsychology. Neuropsychology involves a particular focus on brain-behavior relationships. Put more simply, this means that the neuropsychologist will attempt to determine how the injury to your brain has affected your mental skills, your emotional adjustment, and your behavior patterns.
A neuropsychological evaluation often entails a full day or more of formal psychological testing as well as an extensive interview with the neuropsychologist. In the interview, the neuropsychologist will ask you to discuss your injury and surrounding events, including the various types of treatment you may have received. The neuropsychologist will ask you questions about your personal history; that is, events which took place before the injury. This will include your medical health, any history of prior injuries, your mental health, your use of alcohol or drugs, your educational and work histories, and your family and marital (if applicable) history. Finally, the neuropsychologist will ask you to describe in detail the current problems or symptoms you are experiencing and may ask about other symptoms or problems as well.
Following the interview, you will be administered numerous tests which will assess a wide variety of mental functions known to be affected by brain injury including (but not necessarily limited to) paying attention and concentrating, remembering information, learning new information, communicating with others, and reasoning or problem-solving abilities. In addition, you may be asked to complete questionnaires that will help the neuropsychologist better understand your current emotional status with respect to such problems or symptoms as increased irritability, depression, or anxiety. While the type of tests described above are time consuming and not always easy, they do not involve pain or significant physical exertion and most patients find them to be challenging rather than boring.
After the results of the neuropsychological evaluation have been scored and interpreted, the neuropsychologist or your medical doctor will explain these results to you in detail and include any recommendations based on those results. The results of a neuropsychological evaluation are often helpful to your medical doctor and other rehabilitation therapists in tailoring your rehabilitation therapies to the particular strengths and weaknesses indicated by the evaluation. The results of the evaluation also can help you and those treating you to make important decisions such as whether it is safe to return to driving an automobile and whether it is advisable to attempt to return to work. As recovery from traumatic brain injury is a process often involving 1-2 years or more, one or more follow-up neuropsychological evaluations may be ordered. The results of more recent evaluations can be compared to the preceding evaluation in order to monitor your recovery and to adjust treatment, academic, or vocational planning accordingly.
The purpose of a neuropsychological evaluation is similar to CT or MRI exams. Both try to locate areas of the brain that may be damaged after a traumatic brain injury. The CT or MRI actually takes a snapshot of the brain and, if there is any obvious damage, then the doctor can actually see it. Neuropsychological evaluations do not take an actual picture of the brain. However, depending on how a person performs on the battery of tests, the neuropsychologist can get a good idea of what areas of the brain are likely damaged. This is because each test that is given is related to one or more areas of the brain and the pattern of low and high test scores gives the neuropsychologist an idea of possible problem areas.
This type of examination can take an entire day. It is often broken up into several testings to avoid fatigue. It involves a variety of paper/pencil tests, an IQ test, an evaluation of the person’s personality, and tests of other things like touch sensitivity, vision and hearing, and academic skills like reading, writing, and math.
The evaluation will provide you with an assessment of your functional skills as will as areas of weakness. It should also give you an idea of what to do about problems you may have after the injury. Unfortunately, many neuropsychological evaluations focus on diagnosis and do not deal extensively with treatment options. Although the focus on diagnosis may be necessary in some situations (e.g., court cases), the better evaluations provide the patient and his or her family with useful information about how to deal with their everyday problems. Be certain to ask for this type of information before the evaluation begins.
After a minor car accident, I was taken to an emergency room and given a CT scan. The doctor said the CT scan showed no brain injury. However, here I am, 8 months later, and I am still experiencing problems. I have severe headaches, periods of confusion and memory loss, and difficulty finding the words to express myself. Is it possible that I sustained brain damage that the CT scan did not show? Should I have another CT scan to see if anything shows up now?
Many brain injuries can cause serious problems without any noticeable damage that would show up on a CT scan. This is why many patients say that their biggest problem is that they look fine on the outside. Sometimes the tissue damage may be slight although still sufficient to cause problems with thinking and memory or speech. The neuropsychological evaluation can often detect brain damage even though the CT scan does not show any serious problems. Rather than get another CT scan, you would be better off getting a complete neuropsychological evaluation. If the problems persist or worsen, then another CT scan or an MRI or PET may be warranted.
My 14 year old daughter had a brain injury about 2 years ago and is still having some big problems. Several times a month I attend a support group for family members and people there talk about "CARF programs." I've never heard of CARF. What is CARF and should I send my daughter to one of these programs?
CARF...The Rehabilitation Accreditation Commission is a private, not-for-profit standard setting and accrediting body for the rehabilitation industry. CARF was established in 1966 and accredits over 12, 600 programs in the United States, Canada, and Sweden. CARF was started because providers, consumers, and purchasers of rehabilitation wanted to have a mechanism that could look at the quality and value of rehabilitation being offered.
CARF standards are practical tools to help a program become focused on the consumer with an emphasis on being able to demonstrate results in functional improvements and efficient delivery of care that customers are satisfied with.
Standards are applied to a program through an on-site survey process done by two peers called surveyors. These surveyors are individuals trained by the Commission to fairly apply the standards , give consultation and suggestions on how to improve and make recommendations in those standards that the program is not in conformance with. The surveyors look at a variety of areas including leadership, financial, strategic planning, personnel, health, physical plant and safety, the rehabilitation process, the ability to measure and manage information about program performance and the specifics of a specialized rehabilitation program.
CARF has had Brain Injury standards since 1985 and has continued to update these standards to ensure the value of programs accredited by CARF. In July 1997 we also will have the new Pediatric Family-Centered Rehabilitation Program standards which you may be interested in since your daughter is 14. These standards focus on the child/adolescent and the family as the center of all activities. The emphasis of these programs is to integrate the child/adolescent back into their family unit, school and community.
Each CARF accredited program has a person who coordinates services and individuals are encouraged to visit prior to entering into any program. You can obtain a list of CARF accredited Brain Injury programs by calling the Commission at (520) 325-1044 #156 and asking Fonda, the Medical Rehabilitation Coordinator to send one to you. You can also E-mail your request to fthompson @carf.org and include the address where you would like the list sent to.
Less than a month ago our lives changed, to say the least, when our mother (she's about 50) had a bad car accident. She's been in the hospital since. Now she's on what they call the Neurosurgery Floor, but they want to move her for rehabilitation soon. I've toured the two rehabilitation programs in our town. One of them is about 40 miles away, kind of far, but they say it has "CARF approval." The other one is about 5 minutes from our home. When I toured the program near our home and asked about CARF, they said they didn't have CARF approval. They said they didn't need it and most rehabilitation programs don't have CARF approval anyway. We have heard that CARF programs are better, but the CARF program is farther away. Both rehabilitation programs seem pretty good. What should we think about in making a choice?
Since I have also had to make a choice about a rehabilitation program for my mother in the past I would offer the following suggestions.…
1.Ask what percentage of individuals in the programs are in your mother's age group? When were these people in the program? (a year ago, 6 months ago, now?)
2.What percentage of the patients seen in their program have acquired brain injury?
3.What percentage of the individuals within the same age bracket and diagnostic category of your mom go home? need assistance? go to supported living? go to long term care?
4.How would they involve you as family members? What would your role be? What kind of training and education would you receive?
5. How often will you be expected to participate in team conferences? Family conferences?
6. You know your mom. When you visit these places would she like the decor? Would she be distressed about anything that she would see, hear, smell?
7. Does your mom have any special needs? Requests? Ask how they would meet those special needs and requests.
8. Ask for their latest satisfaction surveys of people in their program. Ask to speak to current family members of patients in the program. Is there a support group meeting you could attend?
9. Ask what outcomes they would predict for your mother and what would be the length of stay? How would they facilitate your mother's movement through the rehabilitation continuum of care? Are they aware of her monetary and insurance resources to plan judiciously with you?
10. What requirements do you have with your own family that driving 40 miles would be prohibitive to the health of yourself or your family?
CARF...The Rehabilitation Accreditation Commission has been in existence as a private, not-for-profit accreditation and standard setting organization since 1966. We accredit over 12, 600 programs in the United States, Canada, and Sweden . In the arena of Brain Injury we have had standards since 1985. We currently accredit over 465 Brain Injury programs so to say that most rehabilitation programs don't have CARF accreditation in Brain Injury is an interesting statement. In fact most third party payers, reinsurance companies and case managers in the arena of brain injury require or request CARF accreditation.
My parents are dealing with several medical professionals as my sister goes through acute rehabilitation. When I talk with my folks, I get the impression that they are "in the dark" when it comes to my sister’s care and progress. They seem confused about what the doctors have said and a little passive about asking important questions they have. Is there any advice I can give them on how to communicate more effectively with the doctors and rehabilitation staff?
You can certainly encourage them to ask questions and suggest they write down their questions when they think of them, so they can refer to their list of questions when the situation (like a team meeting) is stressful and it would be easy to forget to ask. Team meetings, where information about your sister is probably shared, can be very overwhelming. Because of the number of people involved and the terminology they use, you might want to suggest that your parents take a small cassette recorder and tape record the meeting so they can listen to it later. As a sibling who is also affected by your sister’s injury, you certainly have a right to be at the team meetings, too. From the sound of your question, you would be a good person to "demonstrate" or "model" for your parents how to ask questions in the meetings. You may also want to suggest to your parents that, if they feel overwhelmed by the number of professionals involved, or concerned about disrupting the pace of the meeting, they identify the team member with whom they feel most comfortable and ask that person to meet with them to talk about their concerns. Also, many insurance companies assign case managers to oversee an individual’s treatment; if your sister has one, the case manager can provide or clarify information your parents need.
Your impression that they are "in the dark" may be a reflection of their emotional response to your sister’s situation. They should be encouraged to seek help in coping with the changes in their lives, either from a professional or a support group for family members of survivors of brain injury. The Brain Injury Association, Inc., at (202) 296-6443, should be able to give them information on support groups near them.
There are also publications to help family members and caregivers understand what is occurring. The Brain Injury Association, Inc. should be able to provide you or your parents with information on services they could recommend. A resource I would recommend is Family Articles About Traumatic Brain Injury (Communication Skills Builders, Tucson, AZ 1994).
Is psychotherapy appropriate for someone with traumatic brain injury? The client in question has cognitive impairments in areas such as memory, attention, and judgment. However, the client is very motivated; he has a positive, open attitude. What would be the limitations and benefits of psychotherapy for someone like this?
There are different reasons why a client with a TBI might seek psychotherapy. One reason is that living with TBI can be difficult emotionally. Having a TBI might cause devastating personal losses and change in a person's self-concept. Psychotherapy can help. Cognitive problems do not necessarily mean therapy is not possible. First of all, cognitive loss is not all or none; people with impaired cognition usually maintain some intellectual ability. Second, people can benefit from therapy without remembering what is said. Often the most important ingredient in therapy is developing a safe, caring relationship with the therapist, and this can happen without the client remembering the details of what is said.
Another reason a client might seek psychotherapy is that TBI can cause changes in behavior that make the person hard to get along with, or make it hard for the person to stick with some activity. Such people often benefit from practical behavior strategies. Therapists often meet with a client and his family to suggest such strategies. Sometimes if the family acts differently around the client, the client's behavior will improve.
Finally, some clients benefit from medicine to help depression, anxiety, agitation, and other emotional consequences of TBI. Choosing medication for someone with TBI can be tricky; because such clients can have medical and cognitive problems, it is important to watch for side effects. If someone has cognitive problems, it is important to ensure that he take medications on schedule. Taking too much medication or missing medication could be dangerous.
With all people, deciding if therapy will help, and if so, what kind of therapy, must be made on a case-by-case basis. All therapists should monitor whether therapy is helping, and if it isn't, they should either stop therapy or suggest something new.
My brother sustained a serious head injury and remains hospitalized. The doctors say he is in an "agitated" state. He seems to have gone crazy. What does it mean to be in an "agitated" state and when will my brother regain his senses?
Agitation is defined as excessive behaviors occurring during altered states of consciousness (Bogner & Corrigan, 1995). In traumatic brain injury it occurs during the period of post-traumatic amnesia and is marked by restlessness, aggression and/or emotionality (Sandel & Mysiw, 1996). Pronounced agitation during the acute phase of recovery occurs to approximately one-third of persons who sustain serious traumatic brain injuries (Zielinski, Theroux-Fichera, Tremont, Rayls & Mittenberg, 1994; Bogner, et al., 1995). It is not known why some people show more agitation than others do, though its occurrence has been associated with younger age and more severe injury (Levin & Grossman, 1978). In rehabilitation, the time that agitation lasts varies greatly from one person to another. Agitation resolves for almost all patients. It is not considered an abnormal part of recovery, and some schemes for describing the early phase of recovery from brain injury consider it a distinct stage (Malkmus, Booth & Kodimer, 1980). The primary concerns in treating agitation are to minimize the disruption it can cause for addressing therapeutic goals, while protecting the patient and staff from bodily harm (Brooke, Questad, Patterson & Bashak, 1992).
Bogner, J. A., Corrigan, J. D. (1994). Epidemiology of agitation following brain injury. NeuroRehabilitation, 5(4), 293-297.
Bogner, J. A., Corrigan, J. D., Mysiw, W. J., & Clinchot, D. (1995). Prediction of functional outcome following brain injury: The role of agitation. Rehabilitation Psychology, 40, 141.
Brooke, M., Questad, K., Patterson, D., & Bashak, K. (1992). Agitation and restlessness after closed-head injury: A prospective study of 100 consecutive admissions. Archives of Physical Medicine and Rehabilitation, 73, 320-323.
Corrigan, J. D. (1989). Development of a scale for assessment of agitation following traumatic brain injury. Journal of Clinical and Experimental Neuropsychology, 11, 261-277.
Corrigan, J. D., Bogner, J. A. (1995). Assessment of agitation following brain injury. NeuroRehabilitation, 5(3), 205-210.
Corrigan, J. D., Bogner, J. A. (1994). Factor structure of the Agitated Behavior Scale. Journal of Clinical and Experimental Neuropsychology, 16, 386-392.
Corrigan, J. D., & Mysiw, W. J. (1988). Agitation following traumatic head injury: Equivocal evidence for a discrete stage of cognitive recovery. Archives of Physical Medicine and Rehabilitation, 69, 487-492.
Corrigan, J. D., Mysiw, W. J., Gribble, M., & Chock, S. (1992). Agitation, cognition, and attention during post-traumatic amnesia. Brain Injury, 6, 155-160.
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Levin, H. S., & Grossman, R. G. (1978). Behavioral sequelae of closed-head injury. Archives of Neurology, 35, 720-727.
Malkmus, D., Booth, B. J., & Kodimer, C. (1980). Rehabilitation of the head-injured adult: Comprehensive cognitive management. Downey, CA: Professional Staff Association of Ranchos Los Amigos Hospital, Inc.
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Sandel E., & Mysiw, W. J. (1996). The agitated brain injured patient. Part 1: Definitions, differential diagnosis, and assessment. Archives of Physical Medicine and Rehabilitation, 77, 617-623.
Zielinski, R. E., Theroux-Fichera, S., Tremont, G., Rayls, K. R., & Mittenberg, W. (1994). Normative data for the Agitated Behavior Scale. The Clinical Neuropsychologist, 8, 348.
What is the role of the Occupational Therapist in brain injury rehabilitation?
The role of the Occupational Therapist on the brain injury rehabilitation team is to maximize functional independence. The Occupational Therapist looks at all the activities that a person was able to do prior to the injury, assesses the areas of weakness, and develops a program to improve those areas or implements compensatory strategies.
The Occupational Therapist addresses upper extremity functioning in terms of strength and coordination, cognition and perceptual skills including memory, organization, reasoning and problem solving, functional mobility, and activities of daily living. The latter includes all of the activities that we take for granted such as getting out of bed, bathing, dressing and eating, to the more complex activities such as independent living, meal planning, grocery shopping, cooking, home management and working. When addressing activities of daily living, the Occupational Therapist looks not only at the physical barriers that the individual needs to overcome but the cognitive barriers, as well.
My friend was caught in the crossfire of a gun fight and was shot in the head. His brain injury was serious but he is making progress. He is re-learning basic activities like eating, dressing, and other self-care things; however, he could do more with the proper therapy. Unfortunately, he is being discharged from the hospital this week. How can I help my friend continue to recover? Is there anything that his family and friends can do to help, even though we are not therapists?
There is plenty that you can do to help, and in many ways, depending upon your relationship with your friend, your effectiveness in promoting functional advances over time can be more powerful than that of the therapist. Coming home after injury to the brain is a very critical time. During this period of re-entry, old routines are going to be more difficult to manage independently, and the emotional reaction to this reality is always a very strong one. Surely, this is an area where you can play a very meaningful role in providing support, encouragement, and promoting a feeling of hope. Over time, differences in your friend will become increasingly clear and even with the best therapy, changes in behavior, mobility, cognition, etc. will exist. What is key is the creation of new life roles and routines -- ones that offer meaning to life. This objective surely transcends any single rehabilitation profession, and surely can be promoted by any loving friend or family member.
When my brother comes home from the hospital, he still will need some formal therapies; however, I would like to help him resume a somewhat "normal" life. He has recovered enough from the brain injury to participate in some non-therapy activities. I want to help him get back into everyday activities like work, socializing, and recreation. What can I do to help my brother with "community re-entry?"
"Formal" therapy should always promote community re-entry and should incorporate family members in the process. Rehabilitation is a process whereby a person is helped to re-establish old routines and interests and is assisted in the development of new roles when necessary. At the end of the process, the person needs to meaningfully participate in the world (work), be able to experience pleasure through playful activities (i.e., play), and experience a shared commitment with others (love). In essence, we are all working toward these goals whether injured or not. So, if you conceptualize rehabilitation in this way, there is indeed a lot you can do to help. Encourage him to gradually resume those interests (social, vocational, recreational) that have been enjoyed in the past, and help your brother to sharpen his awareness as to what is and is not possible. In turn, modifications can be made, new activities established, and over time, your brother can feel that life again is meaningful.
My family member is in the hospital after a car crash and will be discharged soon. While the hospital is recommending a nursing home, my family feels we should look into rehabilitation programs. What should we look for in a brain injury rehabilitation program?
The hospital may recommend a nursing home if they feel that your family member will not be able to tolerate at least 3 hours of therapy a day. However, you are your family member's best and most important advocate. This disaster has thrust you into a difficult position where you will have to balance what the family wants and what the experts and funding agencies can or are willing to deliver. Don't be afraid to appeal a negative decision; be vocal but civil.
In an acute brain injury program you should look for a complete service system that includes: physical therapy; occupational therapy (deals with dressing, upper body functioning, everyday problem solving); speech therapy (deals with speech, swallowing, cognition); behavioral therapy (helps the person learn to control his own behavior, problem solving and executive functioning); and a board certified physiatrist (a doctor who specializes in rehabilitation medicine). The program also should have available a neuropsychologist, neurologist and psychiatrist. It's a real plus if the program has some sort of substance abuse program, as there are a number of persons injured while under the influence of alcohol/drugs. Also, check to see if the program offers family education. You and your entire family need to learn about brain injury, particularly so that you can understand the changes in your family member's behavior and personality.
You also should check to see if the program is JCAHO or CARF accredited. These accreditations insure a high quality of care and services. Ask to reveiw the program's outcomes. These are ratings of recovery of function in several areas, ranging from dressing to memory to mobility. What you really want to know is: how talented is the staff? Did they graduate yesterday or do they have experience in neurorehabilitation?
If your family member is a child you may also look for child-life services (people who play with the child and help him accommodate and understand what is happening), and some sort of academic servcies. You will want a favorable client-to-staff ratio (1:1, 2:1, or 3:1 is acceptable). Meet the staff who provide the care and treatment -- you must trust them otherwise you will not feel comfortable leaving your child in their care. Many acute pediatric neurorehabilitation programs offer you the option of sleeping in your child's room; you may wish to inquire about this option. One word of caution: if you have other children at home don't abandon them; get back home and resume the semblence of family life as soon as you feel comfortable with your child's rehabilitation care.
Finally, recovery from a brain injury takes a lot of time (sometimes years). Recovery can range from nearly complete to permanent disability. In some cases the person with the brain injury may require transfer to a post-acute program that focuses on long-term cognitive and behavioral aspects of recovery. No matter which way it goes, you must take care of yourself because if you burn out you will not be there for your fmaily member when they really need you, after the rehabilitation has ended and they return home.