Understanding Brain Injury A Guide for the Family by Mayo Clinic

Understanding Brain Injury
A Guide for the Family


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Introduction......................................................................................................................... 3
A Team Approach .............................................................................................................. 5
Brain Structure and Function........................................................................................... 7
Causes of Brain Injury....................................................................................................... 9
The Recovery Process....................................................................................................... 11
Stages of recovery........................................................................................................ 12
Treatment of brain injury........................................................................................... 13
Compensation Strategies................................................................................................. 15
Thinking Changes After a Brain Injury....................................................................... 16
Perceptual changes........................................................................................................... 20
Behavioral Changes.......................................................................................................... 23
Emotional Changes........................................................................................................... 26
Depression..................................................................................................................... 27
Self-esteem.................................................................................................................... 29
Communication Changes ............................................................................................... 30
Other Physical Effects of Brain Injury......................................................................... 33
Fatigue........................................................................................................................... 33
Seizures.......................................................................................................................... 34
Spasticity....................................................................................................................... 36
Swallowing.................................................................................................................... 37
Bladder and bowel....................................................................................................... 38
Life After Brain Injury..................................................................................................... 40
Going home.................................................................................................................. 40
Relationships................................................................................................................ 40
Sexuality........................................................................................................................ 42
Driving........................................................................................................................... 43
Returning to work........................................................................................................ 43
Returing to school........................................................................................................ 44
Recreation and leisure................................................................................................. 45
Use of alcohol and drugs............................................................................................ 46
Activity restrictions..................................................................................................... 47
Table of Contents
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Available Resources......................................................................................................... 48
Contacting Health Care Providers................................................................................. 50
Appendix A: A Partnership Approach........................................................................ 51
Appendix B: Memory and Organizational Aids....................................................... 52
Calendar........................................................................................................................ 52
Cue Cards...................................................................................................................... 54
Appendix C: Problem-Solving Worksheet................................................................. 55
Appendix D: Americans with Disabilities Act.......................................................... 56
Summary............................................................................................................................. 57
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Introduction
Key Messages
• Brain injury affects virtually every area of a person’s life.
• The relationships, roles and responsibilities of family members and other
people close to the person will experience a period of adjustment.
• Adjustments are best made in small steps with the instruction and guidance
of health care team members.
Brain injury is a life-altering event which affects every area of a person’s life —
including his or her relationship with family members and others close to him or
her. The phrase acquired brain injury refers to medical conditions that occur to the
brain (usually after childhood), changing its function. These conditions include
stroke, traumatic brain injury, tumor and other diseases of the brain.
The effects of brain injury often change roles and responsibilities within the family.
Family members and others close to a person with brain injury may struggle
to cope with behavioral changes caused by the brain injury. The injured person
also may struggle to adjust. Family members and others close to the person
may feel stressed, burdened, even depressed by the major changes in activities,
responsibilities, daily schedules, leisure and support that are required to adjust to
the consequences of acquired brain injury.
Often, major adjustments are best made in small steps. Simple changes may help
the person with brain injury, family and friends to find more enjoyment in their
relationships and activities. By taking each stressful situation one step at a time,
the person with brain injury and family may feel that life is becoming a little more
“normal” again.
This booklet contains information on the human brain, causes of acquired brain
injury, the recovery process, and behavior, communication and physical changes
after brain injury. It also outlines examples of stressful behaviors and situations
that people with brain injury may experience. Possible solutions follow each
example. A solution that works well for one person may not work for another. For
this reason, the best way to use this booklet is to try one solution for two or three
weeks. If that solution does not work, try another.
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Sometimes, the ideas in this booklet stimulate families to develop unique solutions
to challenges. If, after trying several solutions to a problem, nothing seems to
work, seeking advice from a professional may help. A brain injury psychologist
(neuropsychologist), clinical social worker or other behavior specialist can help
analyze and develop an approach that considers the special features of the patient’s
situation.
Recovery from brain injury is a process that takes time. In recent years, brain
rehabilitation as a specialty has advanced in its understanding of ways to
encourage and maximize recovery. Your team will use all available knowledge
and techniques while caring for your loved one. Consult any member of the
health care team to address your concerns and questions.
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A Team Approach
Key messages
• Many people play a role in a person’s recovery after a brain injury.
• You and your loved one with brain injury are the most important members
of the health care team.
The health care team is an important source of information and support to the
injured person and family. The team can recommend a treatment plan and help
you learn skills to meet specific needs. Health care team members may include:
• A primary care physician.
• Physiatrists — Physicians who specialize in physical medicine and rehabilitation,
including brain injury rehabilitation.
• Rehabilitation nurses — Nurses with training and expertise in brain injury
rehabilitation and discharge planning.
• Neuropsychologists — Professionals with training and expertise in evaluating
and treating thinking, behavioral and emotional changes caused by a brain
injury.
• Physical therapists — Professionals who evaluate and treat changes in physical
abilities.
• Occupational therapists — Professionals who evaluate and treat thinking and
perception problems, and help an injured person maintain or learn independent
living skills (for example, swallowing, eating, dressing, managing money and
safety awareness).
• Speech language pathologists or speech therapists — Professionals who
evaluate and treat communication and thinking problems.
• Recreation therapists — Professionals who help a person with brain injury
explore and participate in leisure activities.
• Clinical nurse specialists — Professional nurses who help coordinate care of
patients with brain injury and support and educate their families about the
injury and recovery process.
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• Social workers — Professionals in the hospital and outpatient settings who help
guide the adjustment to acquired brain injury. They provide information on
discharge planning, assessment of financial resources, and community resource
referrals. They may also assist in addressing stress management and the
development of effective coping and adjustment strategies.
• Other professionals, such as respiratory therapists, child life therapists,
chaplains, dietitians, and vocational (employment) counselors.
You and the person with brain injury are important members of the health care
team. Active participation in treatment and rehabilitation is essential to recovery.
The involvement of other family members, caregivers, friends and co-workers
also can help the person with brain injury successfully return home and to the
community.
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Brain Structure and Function
The human brain has billions of nerve cells. They are arranged in patterns that
work together to control thought, emotion, behavior, movement and sensation. For
reference, it helps to know about the brain’s structure and function.
The brain is divided into two halves that look nearly the same but differ
in many functions. The halves are called the cerebral hemispheres (figure 1). These
are further divided to create four separate areas called lobes.
Figure 1. Cerebral hemispheres
For most people, the left half of the brain controls verbal functions including
language, thought and memory involving words. The right half controls nonverbal
functions. These include, for example, recognizing the differences in visual patterns
and designs, reading maps and enjoying music. The right hemisphere also is
involved in expressing and understanding emotions.
Right
hemisphere
Midline
Left
hemisphere
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Although each half of the brain has distinct functions, the two parts actually
work closely together to control the activity of the body. The left side of the brain
controls movement and sensation in the right side of the body, and the right side
of the brain controls movement and sensation in the left side. Thus, damage to the
right side of the brain may cause movement problems or weakness on the body’s
left side.
Specific parts of the brain control specific functions. The effect of a brain injury is
partially determined by the location of the injury (figure 2).
Figure 2
Heart rate,
breathing and
blood pressure
Hearing
and memory
Smell
Planning and
problem-solving
Speech
Touch
Movement Perception
Vision
Balance and
coordination
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Causes of Brain Injury
Causes of brain injury may include:
Acquired brain injury — Refers to medical conditions that occur to the brain
(usually following birth), changing its function. These conditions include
stroke, traumatic brain injury, brain hemorrhage, tumor, anoxia and other nondegenerative
diseases of the brain.
Aneurysm — Ballooning of a weakened wall of a vein, artery or the heart.
Anoxia — Lack of oxygen to brain tissue, which damages the cells.
Concussion — A temporary disturbance of brain function resulting from a fall or
blow that jars the brain within the skull, also called mild traumatic brain injury.
Contusion — An injury on the brain’s surface, similar to a bruise.
Diffuse axonal injury — An injury caused by pulling, stretching or tearing of cells
throughout the brain.
Edema — Swelling caused by more-than-normal fluid in brain tissue. With
pressure buildup, edema also can result in brain cell damage and blood flow
interruption.
Encephalitis — A potentially life-threatening infection or inflammation of the
brain.
Hematoma — Pooled blood inside the brain tissue or on its surface. With
pressure buildup, hematomas also can result in brain cell damage and blood flow
interruption.
Hemorrhage — Profuse bleeding (internal or external) caused by damage to a
blood vessel.
Meningitis — An infection and inflammation of the central nervous system that
affects the membranes and cerebrospinal fluid surrounding the brain and spinal
cord.
Mild traumatic brain injury — A temporary disturbance of brain function
resulting from a fall or blow that jars the brain within the skull.
Skull fracture — A break in the skull (bone that covers the brain).
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Stroke — An interruption of blood flow to part of the brain, caused by an artery
blockage, hemorrhage or aneurysm. Decreased blood flow results in little or no
oxygen reaching brain cells.
Traumatic brain injury — Any injury to the brain that results from a violent
force (trauma) to the head, such as an injury from a motor vehicle accident, fall or
physical blow.
Tumor — An abnormal growth, or tissue that looks normal, but has no function.
The tumor may be malignant (cancerous) or benign (noncancerous).
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Recovery Process
Key messages
• Recovery from a brain injury is a process that takes time.
• Various treatment options and coping strategies can help life gradually feel
“normal” again.
Recovery following a brain injury may be measured in weeks, months or years,
and slows with the passage of time. Some of the effects of brain injury can be longlasting
and recovery may be incomplete. Although some people with severe brain
injuries experience only mild long-term difficulties, others may require care or
special services for the rest of their lives.
In the days and weeks immediately following brain injury, the function of
surviving brain tissue is often affected by swelling, bleeding and/or changes in
the brain’s complex chemistry. Sometimes blood accumulation must be removed
surgically to reduce swelling and pressure within the brain. Controlling swelling
and allowing time for the brain’s blood flow and chemical systems to recover
usually lead to improved function.
Exactly what happens in the brain during the later stages of recovery is not clear,
but some parts in the process are becoming clearer. New research is shedding light
on brain tissue and its capacity to repair itself. Many things can occur that help
restore surviving brain tissue to maximize function. For example, although the
total number of brain cells may not change, it is thought that surviving brain tissue
has the capacity gradually to learn how to perform some functions of destroyed
cells.
In cases of traumatic brain injury, trauma often occurs to other parts of the body,
with associated bleeding, swelling and changes in function. The effects of these
other injuries can prolong overall recovery and maybe even further damage the
brain. For instance, excessive bleeding may deprive the brain of needed blood and
oxygen. Prompt treatment of associated injuries may help limit brain damage.
The medical community is gradually realizing how a damaged brain recovers.
Current treatment methods are based on a growing understanding of the brain’s
recovery processes.
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Stages of recovery
Key messages
• Most adults with a brain injury progress through common recovery stages.
• The length and outcome of each stage cannot be predicted.
• During recovery, a person may shift back and forth between stages.
• Inconsistency is common.
Researchers do not understand exactly what happens to the brain during
recovery. Factors such as age and the severity and location of a brain injury
can affect, but do not entirely predict, the outcome of recovery. For example,
some people with significant brain injuries experience only mild long-term
difficulties, while others need lifelong, special care.
In the first few weeks after a brain injury, swelling, bleeding or changes in brain
chemistry often affect the function of healthy brain tissue. The injured person’s
eyes may remain closed, and the person may not show signs of awareness.
As swelling decreases and blood flow and brain chemistry improve, brain
function usually improves. With time, the person’s eyes may open, sleep-wake
cycles may begin, and the injured person may follow commands, respond to
family members, and speak.
A period of confusion and disorientation often follows, during which the
person’s ability to pay attention and learn stops and agitation, nervousness,
restlessness or frustration may appear. Sleeping patterns may be disrupted.
Overreaction to stimulation and physically aggression may result. This stage
can be disturbing for family because the person behaves so uncharacteristically.
Inconsistent behavior also is common. Some days are better than others. For
example, a person may begin to follow a command (lift your leg, squeeze my
finger) and then not demonstrate this behavior again for a time. This stage of
recovery may last days or even weeks for some. However, once demonstrated,
a behavior usually appears again. In this stage of recovery, try not to become
anxious about inconsistent signs of progress. Ups and downs are normal.
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Family and friends can help by creating a calm, quiet environment (for example,
limiting the number of people in the person’s room, turning off the television and
dimming the lights). In addition, ask questions of the clinical nurse specialist and
others on the health care team, who are responsible for keeping you accurately
informed. You are encouraged to ask questions to stay abreast of your loved one’s
progress.
Later stages of recovery can bring increased brain function. The person’s ability to
respond may improve gradually. New research is investigating the body’s ability
to replace damaged brain tissue. Other parts of the brain, however, may slowly
learn to assume functions of the damaged tissue.
Treatment of brain injury
Key messages
• A broad range of therapy, testing and other treatment options are available
to help people after a brain injury.
• Treatment for brain injury is tailored to meet individual needs.
• Members of the health care team determine when the rehabilitation
process will begin.
Depending on the nature of the brain injury, some people need only regular
follow-up appointments with a health care provider. Others receive therapy,
tests and monitoring on an outpatient basis. Still others begin treatment in an
intensive care unit (ICU) or a general hospital unit, and may be transferred later
to a rehabilitation unit. After they leave the hospital, therapy as an outpatient
may continue.
During the early weeks after injury, treatment focuses on stabilizing the
person’s physical condition, preventing complications such as pneumonia and
blood clots, and addressing medical issues that arise (for example, removing
blood or other fluid buildup to reduce swelling and pressure in the brain).
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When the health care team determines that the person with brain injury is ready,
the rehabilitation process can begin. Rehabilitation encourages the body’s natural
healing process through:
• Stimulating and enhancing physical and thinking abilities.
• Teaching new techniques to compensate for lost physical, thinking (cognitive)
and behavioral skills.
Early on, therapy strives to keep the person safe and increase awareness of his or
her surroundings. For example, the health care team may need to help the person
relearn date, time and location and understand what happened with the injury.
As cognitive and physical abilities progress, the focus shifts to improving attention
span and mobility, coping with memory and thinking problems and increasing
independence in self-care skills. The person may participate in stretching,
strengthening, balance and range of motion exercises. Community outings to
practice skills learned in the hospital may be included.
How much and what rehabilitation therapy the person with brain injury receives
depends on factors such as level of awareness, other injuries such as fractures, the
need for rest, and the ability to participate in therapy.
If you have concerns about your loved one’s thinking, behavior or emotions, even
years after a brain injury, contact a member of the brain rehabilitation team.
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Compensation Strategies
The following sections outline common thinking, behavioral, emotional and
communication changes that can occur after a brain injury, and ways to help the
person with brain injury cope with such changes (compensation strategies). These
strategies build on the person’s strengths and work around (compensate for)
deficits or problems that result from a brain injury.
Compensation strategies work best with a team approach that includes the person
with brain injury, family members and other caregivers. Consistent and frequent
repetition of these strategies by all caregivers increases the chance of success.
Each person is unique, so a technique that works well for one person may not
work for another. Try one strategy for two or three weeks. If it does not work, try
another suggested strategy or develop and try your own solution. If, after trying
several solutions to a problem, nothing seems to work, ask a member of the health
care team to help you develop a different approach.
*See Appendix A: “A Partnership Approach”
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Thinking Changes After Brain Injury*
Brain injury can disturb:
• Alertness and concentration
• Self-awareness
• Perception
• Memory and learning
• Reasoning, planning and problem-solving
• Speech and language
• Motor control
• Emotions
The information that follows will help familiarize you with behavior, memory and
thinking problems that a person with brain injury may experience. Also included
are techniques to help the person participate more effectively and comfortably
in the family. Consistent and frequent repetition of these techniques listed will
increase the chance of success.
Do not hesitate to contact any member of the brain rehabilitation team if you have
questions or need assistance and suggestions.
Problem Signs What to do
Confusion • Confuses times/
tasks in schedule of
activities
• Confuses past and
present events
• Confabulates (makes
up convincing stories
to fill memory gaps;
this is not intentional
lying)
• Encourage the use of a
notebook to log events
and encourage the person
to refer to it for details of
daily events.
• Gently remind the person
of correct details of past
and present events.
• Confirm accurate
information with other
people.
• Arrange for consistency in
routine tasks (use calendar
and notebook).
• Limit changes in daily
routine.
• Provide clear, concise
explanations of even the
most basic changes in daily
routines.
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Difficulty
remembering
Problem Signs What to do
• Unable to remember
tasks from day to day
• Unable to remember
new information
• Establish a structured
routine of daily tasks.
• Encourage the consistent
use of memory aids
such as calendars and
notebooks to plan, record
and check off tasks as
completed.
• Encourage the person to
write new information in
the memory notebook.
• Encourage other family
members also to write any
information they need
to communicate to the
person.
• Encourage review
and rehearsal of this
information frequently
throughout the day.
• Provide opportunities for
repeated practice of new
information.
• Try to pair new
information with facts the
person can recall.
• Provide spoken cues as
needed for recall and,
if necessary, help fill in
memory gaps.
Attention
problems
• Limited ability to
focus
• Distractible
• Difficulty in attending
to one or more things
at a time
• Focus on one task at a time.
• Be sure you have the
person’s attention before
beginning a discussion or
task.
• Decrease distractions when
working or talking with
the person. (Eliminate or
reduce noises.)
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Difficulty with
decision making
Problem Signs What to do
Attention
problems
(continued)
• Praise any improvement in
length of attention to activity.
• Gently refocus the person’s
attention to specific details of
the activity as needed.
• Keep abrupt changes to a
minimum.
• Ask the person to repeat
information that was
communicated to be sure
the person understood the
conversation.
• Schedule brief rest periods
between short periods of
work or activity (for example,
20 to 30 minutes of work, a
five-minute break; 20 to 30
minutes of work, etc.).
• Hesitation with
decisions
• Inappropriate or
potentially harmful
decisions
• Difficulty reasoning
• Ineffective problem
solving
• Encourage the person to
“stop and think.” Many
people with brain injury
benefit from a note or a
stop sign on the front of
their notebook reminding
them to “stop and think.”
• Use the Problem-Solving
Worksheet (Appendix C)
• Help the person explore
various options to solving
problems.
• Have the person write
possible options in the
notebook.
• Discuss advantages and
disadvantages of each
option.
• Role-play to prepare
the person for various
situations.
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Difficulty with
initiation
Problem Signs What to do
• Has trouble getting
started
• Appears disinterested
or unmotivated
(this is typically not
intentional)
• Help the person develop
and follow a structured
daily routine.
• Provide specific choices for
daily tasks. For example,
ask, “Would you like to do
A or B?”
• Simplify tasks. Break down
tasks into simple steps
and complete one step at a
time.
• Encourage use of the
notebook or calendar to set
specific deadlines for tasks
to be completed.
• Praise the individual for
starting without assistance.
• Establish a time frame for
accomplishing tasks.
Difficulty
carrying out a
plan of action
• Lack of follow-through
to completion with a
task
• Difficulty planning a
sequence of tasks
• Appears disorganized
• Begin with small, realistic
projects.
• Include the person in
planning the activity.
• Provide a clear explanation
of an activity before
starting.
• Break down new or
complex tasks into several
easier steps.
• Have the person write the
a step-by-step list as a plan.
• Ask the person to tell
you these steps to ensure
understanding.
• Encourage the person
to refer to the plan, and
check off each task that is
completed.
* See Appendix B: “Memory and Organizational Aids” and
Appendix C: “Problem-Solving Worksheet”
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Perceptual Changes
Perception is the brain’s ability to gather information and make sense of it.
Perceptual changes may cause people with a brain injury not to realize what they
feel, see or hear, even though their senses of touch, sight and hearing are fine.
Perceptual changes may impair the ability to judge distance, size, position and
speed of movement.
After acquiring a brain injury, the person may experience some of the following:
• Unilateral neglect (neglect of one side of the body)
• Visual field cut (each eye sees only half or a portion of its visual field)
• Apraxia (inability to use an object or do familiar tasks)
• Difficulty with spatial relations
Perceptual changes following brain injury can be temporary or permanent. The
following information is intended to help identify perceptual changes and how to
adapt to them.
Problem Signs What to do
Unilateral
neglect
• Bumps into objects on
the affected side
• Turns head toward
the unaffected side
• Ignores food on the
side of the plate on
the affected side
• Fails to dress the
affected side of the
body
• Forgets to bathe
or attend to other
hygiene tasks on the
affected side
• Applies makeup to
only one side of the
face
• Jabs the eye on the
affected side when
putting on glasses
• Ask visitors to stand on the
affected side to encourage
the person to look toward
that side.
• Position bed and chair to
encourage looking toward
the affected side.
• Position bright objects on
the affected side. This
“visual cueing” should be
done only when the person
is alert and not tired.
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Visual field cut
Problem Signs What to do
• Suddenly notices
objects that seem to
appear or disappear
• Bumps into objects on
the affected side
• Turns the head
toward the unaffected
side
• Cannot see food on
the side of the plate
on the affected side
• Loses track of the last
location on a page
where the person was
reading or writing
• When reading, cuts
words in half and
they cannot be
understood
• Remind the person to look
around the environment,
especially on the affected
side.
• Mark “on” and “off”
switches of frequently used
items, such as televisions
and kitchen appliances,
with bright pieces of tape so
the person can easily know
when equipment is on or
off.
• Position bright objects
or favorite things to the
affected side and ask the
person to turn his or her
head until they spot the
objects.
• Draw a straight, brightly
colored line down one side
of a book or notebook as a
cue indicating the edge of
the page. Do this on the
right side of the page if the
right side is affected, and on
the left side if the left side is
affected.
Apraxia • Uses objects
incorrectly; for
example, might use a
toothbrush to comb
hair or a fork to eat
soup
• Stop the person from
continuing a task the wrong
way.
• Show the person what to
do by demonstrating the
position or movement.
• Place your hand over the
person’s hand and move it
through the correct motions
to perform a task.
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Spatial relations
Problem Signs What to do
Apraxia
(continued)
• Fails to follow
spoken directions
due to an inability
to understand or do
what is asked; for
example, may not
give the “thumbs-up”
sign when asked
• Puts clothes on
backwards, upside
down or inside out
• Redirect the person to put on
clothing in correct order, one
step at a time.
• Develop a daily routine for
hygiene and dressing.
• Mistakes the location
of a chair when
sitting down
• Has difficulty finding
items in a cluttered
room
• Has trouble using a
fork or spoon to pick
up food from a plate
• Misjudges distance;
for example, misses
the cup when
pouring coffee
• Misjudges space
between steps when
going up or down
stairs
• Reaches too far or
not far enough to get
objects
• Stands too close or
too far away from
others in social
situations
• Requests eye
appointments often,
because of perception
that vision is affected
• Limit clutter; keep the home
and drawers organized and
neat.
• Keep items used often in the
same location.
• Provide cues with words and
pictures.
• Place brightly-colored tape
across the edge of each step
on stairways.
• Remind that handrails
should be used when
available.
• Encourage using both hands
to feel for objects.
• Provide gentle reminders
and ask the person to move
when standing too close or
too far away.
• Wait for six months after
the brain injury — or the
time recommended by your
physician — to schedule
an eye appointment. It is
unlikely that the problem
with perception is the result
of a new problem with the
eyes.
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Behavioral Changes
Problem Signs What to do
A person with a brain injury may experience changes in behavior, including
self-control, self-awareness and response to social situations. The following are
common behavioral problems for a person with a brain injury, what you may see
and suggested ways to help.
Difficulty with
self-control
• Acts or speaks
without all the
information or
without considering
the consequences
• Impulsiveness or
poor judgment
• Lack of inhibition
• Inappropriate
comments to or about
others
• Gets stuck on one
idea or activity
(perseveration)
• Limit the person’s choice of
options.
• Suggest alternatives for
behavior.
• Explain the reasons for
tasks.
• Be fair in your expectations.
• Respond immediately to
inappropriate ideas but
maintain the original focus
of the discussion.
• Encourage the person
to slow down and think
through tasks or responses.
• Provide supportive verbal
and non-verbal feedback for
reassurance.
• If undesired behavior occurs,
calmly and confidently
discuss the consequences in
private.
• Praise and reward desired
behavior.
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Difficulty
participating in
or being part of
social situations
Problem Signs What to do
Impaired selfawareness
• Lack of awareness
of deficits and
limitations (this is not
typically intentional,
but rather a common
phenomenon
following traumatic
brain injury in
particular)
• Overestimates
abilities;
underestimates
problems
• Inaccurate selfimage/
self-perception
• Anticipate lack of insight.
• Prompt accurate selfstatements.
• Use feedback generously
and supportively.
• Give realistic feedback as
you observe behavior.
• Acts or speaks
without all the
information or
without considering
the consequences
• Difficulty taking turns
• Impulsiveness
• Socially inappropriate
behavior or comments
• Not always sensitive
to social boundaries
• Acting out of place in
unfamiliar social or
public settings
What to do —
before the event
• Provide clear expectations
for desirable behavior in
social settings or in special
circumstances such as job
interviews, attending a
funeral, or going to church.
• Plan and rehearse social
interactions so that they will
be familiar, predictable and
consistent.
• Establish verbal and nonverbal
cues to signal the
person to “stop and think.”
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What to do —
during the event
• Treat the person
appropriately, according to
age.
• Encourage the person
to slow down and think
through responses.
• Prompt the person to
consider consequences of
behavior.
• Provide positive feedback
for appropriate behavior.
• Encourage a break in activity
when frustration or fatigue
are evident.
• Respond immediately to
inappropriate ideas but
maintain the original focus
of the discussion.
• If undesired behavior
occurs, calmly and
confidently address the
behavior in private. Be
objective and explain that
the behavior, not the person,
is inappropriate
• Reassure and be fair in your
expectations.
What to do —
after the event
• Review the behavior, the
effectiveness of verbal and
nonverbal uses, and the
overall success of the outing.
• Praise appropriate behavior
and responses to cues and
redirection.
Problem Signs What to do
Difficulty
participating in
or being part of
social situations
(continued)
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Emotional changes
A brain injury can affect the areas of the brain that control emotions. The following
are common emotional problems for a person with a brain injury and suggested
ways to help.
Problem Signs What to do
Difficulty
controlling
emotions
• Mood swings
ranging from anxious
to sad to angry
• Inappropriate
laughing or crying
• Lower tolerance for
frustrating situations
• Expect the unexpected.
• Remain a model of calm
assurance and confidence
if an emotional outburst
occurs.
• Take the person to a quiet
room or area for time to
calm down and regain
control.
• Provide feedback gently
and supportively after the
person regains control.
• Avoid comparing past and
present behaviors.
• Gently redirect behavior to
a different topic or activity.
• Recognize that the
person may use negative
comments or refusal as a
means of control.
• Understand that brain
injury often prevents the
individual from feeling
guilt or empathy.
• Recognize your emotional
reactions to the person with
brain injury.
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Problem Signs What to do
Intermittent
distress (comes
and goes)
• Unhappiness and
irritability
• Cries easily
• Responds angrily for
no apparent reason
• Acknowledge feelings.
• Give the person a chance to
talk about feelings.
• Listen and express your
desire to understand those
feelings.
• Encourage behaviors that
have helped cope with stress
in the past.
Grief • Tearfulness
• Restless sleep
• A change in appetite
• Remind the person that grief
is a healthy and normal
response.
• Explain that coming to
terms with the loss of some
abilities may take time.
• Offer whatever support you
can provide.
• Seek guidance from a
member of the health care
team.
Depression
Feelings of sadness, frustration and loss are common after a brain injury. Such
feelings often appear during the later stages of recovery, when confusion
decreases and self-awareness improves. However, if these feelings become
overwhelming or interfere with recovery, the person may be suffering from
depression.
Depression can arise as the person struggles to adjust to temporary or lasting
disability caused by a brain injury. Depression also may occur if the injury has
affected areas of the brain that control emotions.
Being depressed is not a sign of weakness, nor is it anyone’s fault. Depression
is an illness. A person cannot get over depression by simply wishing it away,
using more willpower or “toughening up.” Depression after brain injury may
result from biochemical and structural changes in the brain. Fortunately,
medication and other therapies can help most people who have depression.
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These are symptoms of depression:
• Persistent sadness
• Irritability, moodiness
• Anxiety
• Loss of interest or pleasure in life
• Neglect of personal responsibilities or personal care
• Changes in eating habits or sleeping patterns
• Fatigue, loss of energy, lack of motivation
• Extreme mood changes
• Feeling helpless, worthless or hopeless
• Physical symptoms such as headaches or chronic pain that do not improve
• Withdrawal from others
• Thoughts of death or suicide
If the person with brain injury has symptoms of depression, his or her health
care provider should be consulted. Effective treatments are available, including
individual and group therapy, medication or a combination. Early treatment
can help prevent needless suffering. Mental health professionals, including
rehabilitation psychologists and social workers, are available to assist.
If your loved one expresses suicidal thoughts or threatens self- harm, immediately
call 911 or your local emergency services provider.
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Self-esteem
Self-esteem is a person’s assessment of self-worth and is often adversely affected
by brain injury. A problem may be more significant if the person with brain injury
has had a mild to moderate injury or a severe injury with good self-awareness. The
more aware the person with brain injury is, the more likely are changes
in self-esteem.
What to do:
• Focus on the positives.
• Allow the person to express feelings.
• When necessary, redirect conversation to positive or neutral thoughts.
• Express your concern and desire to understand the person’s feelings.
• Point out the person’s successes, even partial successes.
• Encourage as much independence as possible.
• Do not criticize.
• Give caring, realistic feedback.
• Help the person plan ahead to maximize opportunities for success.
• Choose activities and tasks that the person can successfully complete.
Challenges vary among people with brain injury. Be aware of how you reference
the person with brain injury. Avoid labeling, categorizing or stereotyping a
behavior or communication skill that was altered by the injury. Learning as much
as possible about brain injury and exercising patience and compassion are good
steps toward understanding and nurturing the self-esteem of the person who has
brain injury.
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Communication Changes
Difficulties with communication can be caused by many factors, including
changes in behavior and thinking skills, problem solving, judgment, reasoning,
awareness, memory loss and lack of self-awareness. Language ability and
speech also may be affected by brain injury.
People with a brain injury may have changes in one or many of these areas. The
severity and combination of problems vary among people.
Problem Signs What to do
Initiating
conversation
• Does not respond
to another person’s
conversation,
questions or
comments
• Does not start, or
is slow to start
conversations, ask
questions, or make
comments
• Leaves long pauses
• Has difficulty with
explanations
• Encourage the individual
to participate. For example
ask, “What do you think
about that?”
• Ask open-ended questions
such as, “Tell me about...”
• Give the person time to
organize thoughts. Extra
time may be necessary to
respond to any request or
question.
• Give the individual your
full attention until the
thought is completed.
• Rephrase what he or she
has said such as, “Do you
mean…?”
Following
conversation
• Has difficulty paying
attention to what is
said
• Misinterprets what is
said
• Get the person’s attention
before speaking.
• Be clear and concise.
• Reduce distractions.
• Emphasize important
information.
• Offer to repeat what was
said.
• Ask the person to look at
you when speaking.
• Invite the person to ask
questions or request
clarification.
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Problem Signs What to do
Taking turns in
conversation
• Talks non-stop, does
not give the listener a
turn to speak
• Does not
appear to adjust
communication style
or behavior for the
situation
• Has a hard time
selecting topics for
conversation
• Has a hard time
keeping up when
topics change
• Introduces a new
topic abruptly
• Does not always stay
on topic
• Politely interrupt and ask
for a chance to speak.
• Ask the person to, “Please
make it brief,” or announce
that you would like to
speak.
• Ask about the person’s
interests and opinions.
• Clarify new topics as they
arise.
• Ask how the person’s
comment relates to the
topic, for example, “Do you
mean… ?”
• Tell the person you are
confused or “getting lost” in
the conversation.
Problem with
intelligibility
• Slurred speech
• Speaks too loudly
or softly, making
the message hard to
understand
• Speaks too rapidly
• Tell the person you did not
understand and ask to hear
it again.
• Establish and use consistent
gestures or cues (for
example, cup your hand to
your ear as a reminder to
speak louder).
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Problem Signs What to do
Nonverbal
communication
• Does not seem to
understand common
non-verbal cues
• Stands too close
or too far from
conversational
partner(s)
• Uncomfortable
number or type of
physical contacts
• Body language that
does not seem to
“match” what is said
• Facial expressions
that do not seem to
“match” what is said
• Distracting,
repetitive or
excessive body
movements
• Poor eye contact
• Staring at others
during conversation
• Ask the person to maintain
a comfortable distance.
• Politely ask the person to
modify his or her physical
contacts because you feel
uncomfortable; offer an
explanation if necessary.
• Tell the person you are
confused by the difference
in body language and
spoken message.
• Ask what the person is
feeling.
• Politely ask the individual
to stop distracting
movements.
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Other Physical Effects
A brain injury can affect physical abilities such as balance, mobility, coordination
and muscle strength, tone and control. It may also affect the body’s senses
(hearing, vision, smell, touch and taste). In addition, a brain injury can cause
fatigue and conditions such as seizures, spasticity and swallowing difficulties.
Fatigue
Fatigue is very common during brain injury recovery. Fatigue may result from
the injury (and other injuries in cases of trauma) or from additional physical and
mental effort required to do tasks that once were performed with little or no effort.
Physical functioning, attention and concentration, memory and communication can
be adversely affected by fatigue.
When a person with a brain injury first returns home, knowing how much that
person can or should do can be difficult. Often during this transition, the person
and family members become discouraged with the slow pace of recovery, changes
in responsibilities, or they may try to do or expect too much. This is just one step
in the recovery process. In time, the person’s stamina and energy level likely will
improve, and the ability to engage in activities may be increased.
The following strategies may be useful in helping the person with brain injury
learn to manage fatigue:
• Encourage use of a calendar or planner to help manage mental fatigue.
• Set a schedule that includes regular rest breaks or naps. (For example, one
nap in the morning and one in the afternoon after some activity, physical or
mental.) Rest breaks or naps should not exceed 30 minutes.
• Avoid evening naps.
• Gradually decrease the length and number of breaks as the person’s ability to
tolerate activities with less fatigue improves.
• Resume activities gradually, over weeks or even months.
• Start with familiar tasks that the person can complete without fatigue.
• Gradually increase the complexity of the task, encouraging breaks as needed,
to slowly increase the length of time.
• Become familiar with indicators of fatigue for the person.
Strategies to learn to manage fatigue continued
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• Watch for signs of fatigue, such as increased inattention or distractibility,
repetition of tasks or comments, irritability or increased errors.
• Encourage breaks, every five minutes, during tasks, before or as soon as
signs of fatigue appear.
• If the health care team recommends, use assistive aids (for example, a cane
for walking) to conserve energy or a wheelchair for long distances.
• Plan ahead for fatiguing activities, such as visitors, trips, going out.
• Schedule a nap before visitors come or before going out.
• Consider limiting the person’s time with visitors or a rest break during
visits.
Seizures
A medical condition that may occur after brain injury is post-traumatic
seizure. Seizures can be caused by a sudden, excessive, disorderly electrical
discharge of brain cell activity. This risk of ongoing seizures is related to the
severity and characteristics of the brain injury, such as the type and location
of the brain injury. Risk seems to be greatest in the months after injury, then
gradually declines with time.
Several types of seizures may occur after brain injury. The most frequent types
are generalized (grand mal, tonic/clonic) and partial (partial complex and
simple partial) seizures.
Generalized seizures
Grand mal, tonic/clonic seizures usually involve involuntary jerking
or shaking of most or all four limbs, unresponsiveness, and loss of
bladder control.
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Most seizures are self-limited and last only a few minutes. The person may cry
out, stiffen and fall, have jerking movements, turn flushed or blue and have some
difficulty breathing. Remain calm and take the following steps:
• Make sure the person is in a safe area and lay the person’s head on something
soft if a fall occurred.
• Loosen tight clothing such as a necktie or belt and remove eyeglasses.
• Clear away hazardous objects that may be nearby.
• Position the person lying on his or her side to keep the chin away from the chest.
This will allow saliva to drain from the mouth.
• Do not force your fingers or any object into the person’s mouth.
• Do not restrain the person. You cannot stop the seizure.
After the seizure, the person usually will be temporarily confused and drowsy. Do
not offer food, drink or medication until the person is fully awake. Someone should
stay with the person until fully recovered. Check for a medical identification tag on
a bracelet or necklace.
Until a predetermined seizure-free interval has been maintained (often six months
to one year), driving privileges are restricted by state law. During this time,
extreme caution should be taken if the person will be working around heavy or
dangerous equipment.
Dial 911 for emergency assistance in these situations:
• Breathing does not resume after the seizure and mouth-to-mouth
resuscitation is necessary.
• Before the person recovers from the first seizure and another seizure begins.
• The person has been injured during the seizure.
• The person has awakened and requests an ambulance for emergency
medical attention.
• The seizure continues for more than five minutes.
Prompt medical care is also recommended if this seizure is the person’s first or
if the person’s level of alertness remains impaired.
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Partial seizures
Partial complex seizures may involve loss of awareness, inappropriate verbal
response, purposeless movement, staring or repetitive chewing, swallowing
or lip-smacking motions.
Simple partial seizures are involuntary jerking or shaking of one part of the body
without loss of consciousness. These may spread to other body parts and become
generalized.
In this situation:
• Do not try to restrain the person unless safety is jeopardized.
• Try to remove nearby hazardous or harmful objects.
• Arrange for someone to watch the person until full awareness returns.
Medical assistance generally is not necessary when partial seizures occur except
when one seizure follows another in a continuous series, or when
a partial seizure develops into a generalized seizure and the person is
not recovering.
Even if your loved one develops seizures following acquired brain injury, your
health care team will work with you and your family member on treatment options
to effectively manage the seizures.
Spasticity
Injury to the part of the brain that controls movement can cause spasticity, an
abnormal increase in muscle tone. (Tone is the amount of tension or resistance to
movement in a muscle). Unlike a normal muscle, when stretched, a spastic muscle
does not easily relax. Instead, the muscle remains stiff or perhaps non-moveable.
Spasticity usually is not immediately present after a brain injury, but may develop
gradually over weeks or months. Spasticity symptoms range from slight to severe
muscle stiffness. Spasticity can impair the ability to dress, eat, write, balance, move
and walk.
Managing spasticity may be a lifelong process. Treatment varies depending on the
person’s age, severity of symptoms, and related conditions or complications. Your
loved one’s health care provider can provide more information.
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Swallowing
Problems that affect swallowing (dysphagia) may occur after brain injury.
Swallowing is coordinated by the brainstem and the brain’s frontal lobes. The
brainstem, which connects the brain to the spinal cord, relays messages to and from
the swallowing structures (mouth, tongue, throat). The brain’s frontal lobes control
the muscle action of the swallowing structures.
Problems that affect swallowing after brain injury can vary widely and may include
one or more of the following:
• Poor head or upper body control
• Decreased lip and tongue strength, range of motion and coordination
• Impaired memory or concentration
• Any or all of the above may cause aspiration (inhaling food or liquid into the
lungs)
If a person seems to have trouble swallowing, a clinical swallowing evaluation and
videofluoroscopy (a videotaped X-ray of the swallowing process) may be done.
With test results, decisions can be made about treating any swallowing problems.
A person who has trouble swallowing, may need nutrition through a nasogastric or
gastrostomy tube (feeding tube in the nose or stomach). Having either tube does
not rule out the possibility of eating by mouth, but ensures proper nutrition and
hydration (fluid intake). How long the tube is in place depends on the person’s
progress.
Exercises, treatment techniques and positioning may help improve a person’s
ability to chew and swallow. An occupational therapist or speech therapist will
teach the person with brain injury and caregivers how to perform these exercises
and techniques. As a caregiver, your encouragement and help with the swallowing
program are essential. Most people regain the ability to swallow after brain injury,
though it may take longer for some than others.
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Bowel and bladder changes
Brain injury may affect bowel and/or bladder function. The injured person may
need help re-establishing and maintaining a pattern of regular bowel and/or
bladder emptying.
Bowel management
The goals of bowel management include establishing a regular emptying
pattern, maintaining dry, healthy skin, and avoiding incontinence, diarrhea, and
constipation. Each person is assessed by a physician and recommendations are
made as needed.
Bowel problems can occur if the person with brain injury cannot:
• Control bowel emptying voluntarily
• Recognize bowel fullness and the need to have a bowel movement
• Ask for help to the bathroom
• Walk to the bathroom
• Eat enough food with fiber and drink enough fluids
• Plan ahead and allow enough time to get to the bathroom
To maintain optimal bowel function, a person with brain injury should eat
at regular times, focus on eating foods with fiber, drink the amount of fluids
recommended by the dietitian or physician, and be as active as possible. Meeting
with a dietitian to discuss a diet plan may be helpful. The person also may be
asked to follow a bowel care schedule, which includes attempting to schedule a
bowel movement at the same time daily and establishing regular times for meals.
At certain stages of recovery, your loved one may need to use other methods
for bowel emptying (fiber supplements, stool softeners, suppositories, and/or
laxatives). These methods typically are not used regularly because they decrease
the colon’s natural abilities, and these methods may be habit forming. Most
individuals with brain injury regain the ability to regularly and effectively empty
their bowels.
Bladder management
People with brain injury also may have a problem with urination (bladder
emptying) during the post-injury period. Difficulties with urination that were
present prior to the injury (an enlarged prostate in men or a pattern of infrequent
urination in men or women) may add to bladder problems after brain injury.
The goals of bladder management include preserving kidney function, preventing
incontinence (accidental urination), preventing bladder overfilling and bladder
infections, establishing a regular patter of urination with complete bladder
emptying, and maintaining dry, healthy skin in the genital area.
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Problems with bladder management may include:
• Urinary retention (an inability to void or pass urine)
• Urinary incontinence
• Increased urgency to urinate
• Increased frequency of urination
• Incomplete emptying of the bladder
• Bladder infections
• Skin problems because of incontinence
The most common reason for bladder problems after brain injury is damage to the
frontal lobe of the brain. A less common cause is direct damage to the part of the
brain that controls behaviors and memory. Damage to these areas may result in
the inability to:
• Ask for help
• Control urination
• Recall when last urination occurred
• Plan ahead to get to the bathroom
• Walk to the bathroom in time
• Recognize the sensation of bladder fullness or the need to urinate
Early in the care of someone with brain injury, the bladder may be drained
continuously through an indwelling catheter (a tube that is inserted and left in the
bladder). The urine empties through the catheter into a drainage bag, which also
allows for accurate recording of urine output. As the patient improves, the catheter
usually is removed.
If the person cannot sense the need to urinate, other approaches to bladder
management are considered, including:
• Keeping the indwelling catheter in the bladder
• Intermittent catheterization (inserting and removing a catheter several times a
day to regularly empty the bladder)
• Scheduling attempts at urination
• Using an external condom catheter for men
• Using an adult diaper
• Other methods of bladder retraining to control urination may be recommended
To maintain optimal bladder function, a person with brain injury should drink
fluids as recommended by the dietitian or physician. It may be helpful to meet
with a bladder therapist to develop an individual plan. The majority of individuals
with brain injury regain the ability to regularly and effectively empty their bladder.
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Life After Brain Injury
Illness or injury to a family member affects the whole family and those close to
them. If the illness is chronic, the usual family roles, routines and responsibilities
may be interrupted or changed. Take a few minutes to identify how the roles in
your family have changed. What new responsibilities have you added to your
daily routine? How have the changes affected your life?
Going home
The process of rehabilitation begins in the hospital and continues at home.
Outpatient therapy usually lasts considerably longer than inpatient therapy.
Members of the health care team will develop rehabilitation goals that optimize the
abilities of the person with brain injury. Having realistic goals and expectations for
yourself as a caregiver is important throughout the recovery process. Remember
that the rehabilitation team is available to answer your questions and to encourage
you during the adjustment to life at home with a loved one who has a brain injury.
Relationships
Providing companionship and emotional support for the person with a brain injury
may be necessary, in addition to physical care. Caregivers also may have many
other responsibilities, including employment outside the home and caring for the
home and children. Being a caregiver can be overwhelming, and adapting to these
changes is challenging.
Seeking appropriate community-based social support can help lessen stress and
loneliness. Many communities have brain injury support groups and centers for
independent living that can help make connections with other people who have
similar concerns and needs.
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These suggestions may help you as a caregiver and enable you to strengthen
your relationship with the person who has the brain injury:
• Ask for help when you need it. Caregivers frequently try to handle
everything alone. Expecting too much of yourself may add to the stress. Do
not be afraid to ask for help. Find options for assistance such as home health
care or respite care.
• Set limits. There are only so many hours in the day and only so many things
you can do. Some things can wait.
• Plan something to look forward to each day. Reward yourself for caring.
• Take time away from the person you are caring for. Taking an hour, a day,
a weekend or a week away can do wonders to restore your emotional well
being.
• Maintain contact with friends and family to discuss your concerns or have
fun.
• Take care of yourself. Caregivers are vulnerable to stress-related illnesses.
If you are concerned about your health, make an appointment with your
physician. Inform the physician about your situation.
• Take time for exercise. Exercise increases stamina, lessens anxiety and
depression, improves or maintains muscle tone and strength, and increases
self confidence. These benefits make exercise a worthwhile use of your limited
time.
• Learn relaxation techniques such as breathing exercises, meditation or
progressive muscle relaxation.
• Join a support group. Support groups are an outlet for sharing problems and
concerns. People with similar issues understand what you are feeling.
• Keep your sense of humor. Laughter is a great stress reducer because, for a
moment, you are not focusing on problems.
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Sexuality
Love, affection and sexual feelings are healthy human desires. If these desires are
not understood or expressed, confusion, distress and feelings of inadequacy may
result. Sexuality involves the expression of male or female identities through
sexual actions, attitudes and behavior in relationships. From childhood on, we
become aware of sexual differences. We are taught directly and indirectly how to
behave with the opposite sex.
The ability to appropriately express these learned behaviors may be lost after
a brain injury. The adult with brain injury may not understand when it is
appropriate to kiss, hug and touch you or other people.
Addressing your relationship with your family member should be done early in
the rehabilitation process. You may find yourself in a parent role with an adult
person or spouse. You may be perplexed by changes in your partner, who may
act differently after the injury. Feelings of confusion, anger, fear, frustration and
helplessness are understandable.
Talking about your feelings with a member of the rehabilitation team or
someone you trust may help. Although at first you may feel uncomfortable
discussing sexual matters, rehabilitation team members understand your
feelings. The goals of rehabilitation for the person with brain injury include
independence, self-reliance and healthy personal relationships. The ability to
develop and maintain social relationships may be the most important measure of
successful rehabilitation. Therefore, recognizing and discussing concerns about
love and sex are important.
Most people have difficulty talking about sex. The closest family member of a
person with brain injury is usually the most effective person to help the injured
person relearn how to express sexual feelings appropriately. This family member
may benefit from professional support and guidance in addressing sexual issues.
A person with brain injury who cannot recognize sexual cues, may not respond
to a partner. The injured person may not initiate sexual activity. You may
have to be more direct in sexual communication. Providing directions and
cues are ways to reach your partner. Social workers, rehabilitation nurses and
rehabilitation psychologists are resources for support in addressing sexual issues
and concerns.
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Driving
A person with a brain injury may have physical, thinking, perceptual or vision
impairments, or seizures that make driving unsafe. Driving laws vary from state to
state. In some cases, the person with brain injury may be required to pass written
and behind-the-wheel driving examinations before resuming driving.
The privilege of driving may be restricted or revoked temporarily, or in some cases
even permanently. Talk with your loved one’s health care provider if you have
questions about his or her driving ability.
Returning to Work*
Can a person return to work after a brain injury? The answer depends on the
person and the extent of the injury. A brain injury can cause many changes in
behavior, emotions, communication, and thinking skills. Keeping a job may be
difficult, even the same job held prior to the injury. Regardless of whether the
person with a brain injury returns to work, discovering how best to use talents will
make life more rewarding. Paid employment or volunteer or leisure activities may
be options.
Work (defined as productive activity) plays a major role in most people’s lives.
Work provides a sense of achievement, recognition, responsibility, financial
independence, social interaction and structure. Those who return to work after
brain injury become generally healthier and have a higher self-esteem than those
who do not.
Returning to work after a brain injury depends on:
• Availability of jobs
• Health
• Desire to work
• Physical abilities
• Ability to adjust to changes
• Social and behavioral abilities (for example, control of behaviors and getting
along with co-workers)
• Thinking and problem-solving abilities
• Self-awareness of deficits and limitations
• Vocational interests and capabilities
• Willingness to receive further training
• The willingness of an employer to adapt the job or workplace to the injured
person
* See Appendix D: “Americans with Disabilities Act.” Refer to brochure,
“Understanding Brain Injury: A Guide for Employers.”
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Some state agencies can help people with disabilities reach their vocational
goals. The agencies’ services may include physical and vocational evaluations,
training, help with assistive devices, transportation and finding jobs. They work
with the rehabilitation team to determine what employment is the best fit for the
person.
Returning to work after a brain injury can be challenging and rewarding.
Interests, aptitudes and financial options must be considered. The rehabilitation
team will make every effort to help the injured person regain or develop job
skills.
The vocational case coordinator employed by the Brain Rehabilitation Program
can assist you with concerns or questions about brain injury and returning to
work. Contact the vocational case coordinator at 507-255-3116 for assistance.
Returning to School
For children and teenagers, returning to school is important for social and
educational growth. At school, in addition to learning, young people find
friends and peer support and develop social skills. School also provides a place
to monitor children’s intellectual and social growth. Sometimes the effects of
a brain injury are not initially apparent in young children but become more
noticeable later when thinking and social demands increase at school.
School systems have special programs to help students with disabilities return
to school. Most schools have trained special educators. However, not all special
educators are familiar with the needs of people with brain injury.
In some states, a brain injury educational consultant is available through the
Office of Special Education. This consultant will help special educators in
local schools to assess and provide services to students with brain injuries. If
someone who specializes in education after brain injury is not available through
the school system, members of the rehabilitation team often consult with schools
and help local educators develop an educational plan to meet the injured
student’s academic needs.
For those returning to high school and college, developing specific
accommodations can help the person with brain injury be successful in school.
In most colleges, an office for students with disabilities assists in assuring that
teachers provide such accommodations.
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Some common accommodations to assist with learning are:
• Extra time for tests to compensate for slowed thinking or information
processing
• Tests given privately in a distraction-free environment to accommodate for
difficulties with attention, concentration and increased distractibility
• Placement in classrooms with less noise and distractions
• Tape recording lectures to compensate for attention, concentration and
memory problems
• Access to teachers’ or peers’ class notes to compensate for difficulty in
dividing attention between listening to a lecture and taking notes
• Assignments provided in writing to compensate for memory and
concentration problems
• Providing a place to rest or take breaks to compensate for fatigue and
increasing frustration
• Tutoring with a peer or a professional
In many cases, parents and family members become advocates who assure that
the student with brain injury receives the necessary services to successfully return
to school. Parents and family members also serve as go-betweens to make sure
that rehabilitation professionals and school personnel meet to develop a plan for
successful return to school. Members of the brain rehabilitation team are prepared
to assist parents and families in these efforts and to acquaint them with resources
available through the school system and state government.
Recreation and Leisure
Participation in meaningful leisure experiences is essential to the recovery of the
person with a brain injury. Most people naturally select certain activities that they
enjoy and help them meet some basic needs. People with brain injuries may face
barriers to experiencing this kind of fulfillment, including:
• Attitude (some people may not realize the importance of leisure activities)
• Physical disability (they may no longer be able to enjoy the activities they once did)
• Lack of cognitive skills (skills needed to participate in some activities — attention,
concentration, initiation, planning, problem solving — may be impaired)
• Interruption of social and/or language skills
• Lack of knowledge (some may not know how to engage in certain leisure activities
or how to adapt them so they can participate)
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Family members can help by:
• Helping the person identify leisure interests
• Assisting with structuring time and daily schedules so that leisure
balances with necessary tasks and activities
• Planning ahead for recreation to keep life interesting
• Investigating community resources (city parks/recreation departments,
libraries, churches, and other avenues for leisure options)
Through leisure, basic human needs are met, including:
• Feeling good about ourselves
• Being part of a group
• Competing with ourselves and with others
• Experiencing success
• Laughing and having fun (reducing stress)
• Developing useful skills
• Developing friendships
• Strengthening social relationships
Use of Alcohol and Drugs
A brain injury can affect how people think and manage emotions. If a
person with brain injury drinks excessive alcohol, uses illicit drugs or
prescription drugs in excess, those substances can further interfere with thought
processes and can result in serious damage to the cells and nerves in the brain.
Consequently, the effects of brain injury become worse. Family members play
an important role in helping the person with a brain injury comply with
physician recommendations about using alcohol and drugs.
To provide support, family members must:
• Take substance abuse seriously and avoid thinking of it as being a “phase”
• Help motivate the person to lead an alcohol-free and drug-free lifestyle
• Assist the person in developing plans to cope with situations that have
resulted in alcohol and illicit drug use in the past
• Rehearse ways to avoid or react differently to such situations so that future
abuse can be prevented.
Rehabilitation professionals strongly recommend that a person with brain
injury avoid drugs or medications if recommended by a physician, including
alcohol and cigarettes. A rehabilitation psychologist, social worker or chemical
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dependency specialist can help assess whether a drug or alcohol problem exists.
Alcohol and other drug treatment programs are available to help a person with
brain injury recover from chemical dependency. Talk to any rehabilitation team
member or physician if you have concerns about your relative about the use of
alcohol and drugs.
Alcohol and drugs can trigger seizures and disturb:
• Alertness and concentration
• Self-awareness
• Perception
• Memory and learning
• Reasoning, planning and problem-solving
• Judgment
• Speech and language
• Motor control
• Emotions
• Social interactions or social behavior
• Motivation
Activity Restrictions
For safety, the health care team may recommend activity restrictions. Avoiding
additional brain injury is especially important.
When to return to certain activities will depend on the health care provider’s
recommendations and on factors such as the person’s balance, strength, reaction
time and judgment. The health care provider may recommend that the person
not participate for a time in contact sports (such as football or hockey) or other
activities that risk another brain injury (such as driving, using power equipment,
climbing, rollerblading, downhill skiing, snowmobiling or riding a bicycle or
horse).
For safety, be sure the person:
• Uses a seat belt when riding in a motor vehicle
• Follows activity restrictions specified by the health care provider
• Wears a helmet if participating in sports or activities for which a helmet is
available
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Mayo Clinic is closely linked to the Rochester community and the region. Mayo
also is affiliated with Mayo Health System, a growing network of regional
care facilities. Mayo Health System practices are located in more than 50 other
communities in southern Minnesota, western Wisconsin and northern Iowa.
When a person with brain injury is discharged from Saint Marys Hospital, a
variety of community-based services provide ongoing support to encourage
independent living.
Available Resources
People with brain injuries and their families often access these community
resources for support:
• Residential housing assistance
• Vocational assistance and training
• Chemical health services
• Mental health services and counseling
• Legal help
• Financial consultation
• Leisure and recreation groups
• Support groups
• County and state social and human services
Because Mayo maintains strong relationships with these community services
throughout the region, Mayo Clinic staff can provide information about groups
and organizations that may offer further assistance.
The Brain Injury Association, Inc. is an important resource available for people
with brain injuries. This national, non-profit organization, dedicated to brain
injury prevention, research, education and advocacy, can be reached by calling
800-444-6443, or by visiting the following Web site at: www.biausa.org.
Minnesota, Iowa and Wisconsin have state affiliates of the Brain Injury
Association. These affiliate organizations operate programs and services
that connect brain injury survivors, their families and friends, health care
professionals and communities. The following organizations welcome your
inquiries for program and support group information.
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Brain Injury Association of Minnesota
Telephone: 612-378-2742
800-669-6442
Web site: www.braininjurymn.org
Brain Injury Association of Iowa
Telephone: 800-444-6443
Web site: www.biaia.org
Brain Injury Association of Wisconsin
Telephone: 262-790-9660
800-882-9282 (in state)
Web site: www.biaw.org
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If you have questions about your loved one’s condition or about this information,
call Mayo Clinic and ask for your loved one’s health care provider.
Mayo Clinic: Rochester, Minn.
507-284-2511
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The following information outlines thinking and behavioral management strategies
that may help you and the person with brain injury compensate for the loss of
certain skills.
A person who has experienced a brain injury may feel a loss of control in many
aspects of life. The person may feel inferior or unequal as a partner in a personal
or working relationship. A partnership approach can be effective in negotiating the
thinking and behavior problems of a person with the injury. After brain injury, it is
important for families, those close to the family and the person with brain injury to
work together as partners to develop solutions to thinking and behavior problems
through the following steps:
1. Prepare a plan of action.
• Involve the person with brain injury in the planning.
• Define responsibilities.
• Use compensation tools such as calendars and notebooks as memory aids
through the planning phase.
2. Keep it simple.
• Break tasks into small steps.
• Keep the environment free of distractions.
3. Use a problem-solving format. (Refer to Appendix C: Problem Solving Worksheet)
• Recognize that a problem exists.
• Define the problem.
• Decide on possible solutions.
• Weigh the advantages and disadvantages of each possible solution.
• Pick a solution.
• Try the solution.
• Evaluate its success.
• Try another solution if the first one does not work.
4. Provide feedback and reassurance.
• Evaluate performance and provide gentle, realistic comments about behavior
• Identify successes and be matter-of-fact about mistakes.
• Be honest, supportive and respectful.
Appendix A
A Partnership Approach
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Memory aids can provide greater independence for a person with a brain injury.
Calendar
Use a calendar to plan and organize daily activities, step by step. A calendar
can serve as a useful memory aid to record events, plan ahead and review
successes. It can also be a reminder about uncompleted tasks and a storage
site for information.
Organize the calendar for easy reference. Record any information that may be
needed more than once, such as medical and vocational contacts, addresses,
phone numbers, detailed information for calendar entries needing more
explanation and directions in a separate, designated section. This section will make
finding the information easier in the future. The calendar can also include medical
information, including the names of health care providers, telephone numbers and
medications with their dosage and purpose.
Appendix B
Memory and Organizational Aids
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Wednesday
FEBRUARY 26
Wednesday
FEBRUARY 26
Time Description
8
9
10
11
12
1
2
3
4
5
8:30 - Catch bus #2 to work
Make bed
Things To Do
Do lau ndry
Make dentist appointment
􀀁
Notes:
20 minute work break
Ride bus #9 to hospital for
speech therapy
Go for walk before dinner
12:30 - lunch with Rob
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Cue Cards
Cue cards can remind a person with a brain injury how to manage more
effectively.
Compensation Cue Card
Compensation techniques
• Stop and think
• Slow down
• Take one step at a time
• Read and follow directions
• Take notes and refer to them
• Ask questions
• Do not assume
• Pay attention to details
• Use the problem-solving process
• Think about the consequences of not finishing a task
• Keep it simple
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1. Define the problem. ____________________________________________
2. Define possible solutions.
3. Weigh the advantages and disadvantages of each possible solution.
Possible solutions Advantages Disadvantages
Appendix C
Problem-Solving Worksheet
4. Pick a solution to try.
5. Evaluate the success of the solution.
6. Try another solution if the first one does not work.
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Brain injury is considered a form of disability and is covered by the provisions of
the 1990 American Disabilities Act (ADA). The ADA prohibits private sector
employers who employ 15 or more individuals and all state and local
government employers from discriminating against qualified individuals with
disabilities in all aspects of employment.
The ADA includes a workplace clause, which requires employers to provide
“reasonable accommodations” for employees with disabilities. Reasonable
accommodations might include making work areas accessible, allowing flexible
work schedules, and re-assigning some tasks to others. However, employers are
not required to make accommodations that would cause them undue hardship.
In addition, employers are not required to hire people who are unable to perform
the requirements of a job.
The ADA contains a broad definition of disability: A physical or mental
impairment that substantially limits one or more major life activities. The ADA
does not contain a list of medical conditions that constitute disabilities.
Accommodations are not based on the diagnosis, but on the specific impairment.
If a brain injury has led to impairment in a major life activity, such as work, the
person may be eligible for accommodations under the law. To help determine if a
person with brain injury meets the ADA’s definition of disability, visit
“Definition of the Term Disability (EEOC Guidance) at
http://www.eeoc.gov/policy/docs/902cm.html
It is important for the person with brain injury to discuss accommodation
needs with the employer. Some employers will accommodate employees
who do not meet the ADA definition of disability.
Appendix D
Americans with Disabilities Act
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A family member’s brain injury affects the whole family. Family roles, routines and
responsibilities may be interrupted or changed. Often an adjustment is required in
the lifestyle and interpersonal relationships of the injured person and family.
This booklet provides some possible solutions or options that may encourage
families to develop their own unique solutions. Often, a brain injury psychologist,
clinical social worker or other behavior specialist can help analyze and develop an
approach that considers the special features of your situation.
Members of the brain rehabilitation team can help you identify ways to adjust to
brain injury.
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Barbara Woodward Lips Patient Education Center
Mrs. Lips, a resident of San Antonio, Texas, was a loyal patient of Mayo Clinic for more than 40 years. She was a self-made business leader who significantly expanded
her family’s activities in oil, gas and ranching, even as she assembled a museum-quality collection of antiques and fine art. S he was best known by Mayo staff for
her patient advocacy and support.
Upon her death in 1995, Mrs. Lips paid the ultimate compliment by leaving her entire estate to Mayo Clinic. Mrs. Lips had a profound appreciation for the care she received
at Mayo Clinic. By naming the Barbara Woodward Lips Patient Education Center, Mayo honors her generosity, her love of learning, her belief in patient empowerment and
her dedication to high-quality care.
MC1298-01rev0308
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