Cognition
"Cognition" refers to thinking. As a result of
thinking we come to understand things. We learn, we gain
confidence, we grow up. We come to believe certain things and
to disbelieve others. We develop a belief about who we are,
beliefs about others, and beliefs about our world. What we
believe to be true we call "knowledge" and what we
believe we know becomes our reality.
There are a number of mental or cognitive abilities we have
related to thinking. There is a lot science doesn't yet
understand about cognition but we know much if not all of it
occurs in the brain and that specific parts of the brain are
devoted to specific abilities, such as the ability to pay
attention, to make sense of what we see, hear, smell, taste,
and touch, to recall what we have stored in memory, and to
problem solve, reason, and communicate. We are learning more
and more about our amazing, and amazingly complicated human
brains, as we continue to do research.
We believe we are the only creatures who have developed
high level thinking ability. Animals rely more on instincts
that are like computer programs within their brains. These
"instinct programs" provide the animal with
reactions to everyday situations that favor survival. There is
little true thinking required as far as we know. These
programs appear to function more or less automatically
whenever some internal experience (such as hunger) or external
event (such as a threat from another animal) switches them on.
We have some of the same instinctual programming as
animals. When we act "impulsively" we act without
thinking, obeying instincts similar to those of animals. When
we give in to our impulses, however, we often find that our
automatic, instinctual reactions rarely work as well for us in
human society as they do for animals in their kingdom.
Instead of relying on instinctual behavior, humans can
stop, think, problem solve and plan if necessary, and then
proceed. This kind of thinking ability gives humankind an
enormous survival advantage. Learning, art, science, and our
various technologies are all the result of the capacity to
think. We are among the most adaptable creatures on the
planet, able to overcome conditions and obstacles far beyond
the range of most (though probably not all) animals' rigid
instinctual responses.
Of course, thinking comes with its own set of problems.
Because we all think differently, thought-governed, human
behavior isn't as predictable as instinct-driven, animal
behavior. This is why we have to work at creating trust with
each other and why we have a harder time getting along than
most other species on the planet. Interpersonal conflict seems
to be a “side-effect” of thinking. Others include
confusion, doubt, divorce, worry, depression, sleeplessness,
and war. Ironically, the capacity that improves our chances
for survival can also threaten it.
Yet for better or for worse, thinking is central to human
life as we know it, so much so that the French philosopher
Rene Descartes concluded, "I think, therefore I am."
Brain
Injury
Injuries due to car accidents, falls, combat, strokes,
heart attacks, drug overdoses, and other catastrophic events
can cause damage to the brain. Traumatic brain injury,
or "TBI," is the term that refers to any blow to the
head from striking or being struck by some hard surface, or by
the blast wave from an explosion. Such traumas create a
"concussion," a violent movement of the brain inside
the skull that damages fragile brain cells.
Damage to even a small number of brain cells can interfere
with thinking and related cognitive functions such as
attention, memory, emotional regulation, language, visual
perception, problem solving and others mentioned earlier.
Because the brain controls almost every physical function as
well, both cognitive and physical impairments frequently
accompany brain injury.
The type of impairment experienced by an individual who has
suffered a traumatic brain injury depends on what parts of the
brain were affected. In the most severe cases there may be
damage to parts of the brain that govern awakening, resulting
in coma or the so-called "vegetative state," where a
person's eyes may open but they otherwise behave as if asleep.
A "minimally conscious state," or "MCS,"
is a state where the individual shows some reliable responses
but is not yet fully conscious.
Cognitive
Rehabilitation after Brain Injury
"Cognitive rehabilitation" refers to the
efforts to improve a person's ability to perform mental
functions. It may be difficult to find a cognitive
rehabilitation program. Physical therapies have existed for
many years and programs for treating physical impairment are
better developed and more plentiful than those for treating
cognitive impairment. Cognitive abilities may take longer time
to improve than physical ones. Consequently, even if cognitive
rehabilitation is available, treatment may end before
meaningful recovery can occur due to limitations in
reimbursement.
A lot more attention is being paid to cognitive impairments
and to cognitive therapies as a result of the wars in Iraq and
Afghanistan. Hopefully, this will result in more research and
more funding for cognitive rehabilitation programs. Currently
cognitive rehabilitation is a specialty of only a few
rehabilitation programs throughout the United States and many
insurance programs continue to refuse to pay for it despite
growing evidence that it is effective.
Beginning
Treatment
Treatment begins with evaluation. Evaluation of
attention, orientation, mood regulation, memory, thinking,
language, visual perception, communication, and complex
thinking (called "executive control" or
"executive functioning") is necessary so that
treatment can be focused on the mental functions most in need
of improvement. Some evaluation may be done with specific
tests. Assessment must also include observing the individual
in real-life situations as they attempt to meet everyday
challenges.
Because cognition is a part of virtually every human skill,
cognitive evaluation is the shared responsibility of several
professions. For example, professionals in the fields of
education, medicine, nursing, nutrition, occupational therapy,
physical therapy, psychiatry, psychology, recreation therapy,
social work, speech-language pathology and vocational
rehabilitation can all contribute essential information to a
comprehensive assessment.
The
Treatment Team
When professional evaluations are completed, the team
will meet and share impressions. The team typically meets with
the person who is to receive treatment and any involved family
member(s) to discuss findings and to compare impressions. The
perspectives of the family, who have known the individual for
a lifetime, and of the individual served, are essential to
this process. The team is usually coordinated by a senior
member--a rehabilitation doctor, case manager, or an
experienced therapist.
The goal of the initial meeting is to
establish a preliminary set of treatment priorities and
associated methods for treatment forged into a structured
program with specific goals and a daily schedule. The program
should take into account what the individual receiving
treatment wants, and, if the treatment is occurring in an
institutional setting, what they most require in order to
return to and participate in Community living. The treatment
program will need to be tried for a period of time and then
re-evaluated. Based on the evaluation of progress, different
goals, different forms of treatment, and different
professionals, may be included as time goes on.
The Treatment Team must ultimately
serve the goals of the individual being treated. At first an
individual served may not be able to meaningfully contribute
his or her point of view due to cognitive or communicative
deficits. In such cases, one of the most important measures of
improvement will be the degree to which the individual becomes
able to participate in self-evaluation and treatment planning.
Motivation
One of the biggest challenges in rehabilitation after a
brain injury is lack of motivation.
Motivation is about doing what it
takes to accomplish something you want. It sounds simple, but
consider the following story:
Jill wants to lose
weight. She doesn't love working out or getting up
early to go to the gym several times a week. But she
is clear about wanting the rewards of a toned body,
feeling good, and so on. Jill is making progress but
she often finds that in order to stick with it, she
has to "dig deep," and remind herself why
she needs to keep going. She keeps track of her
progress so she can see that she is getting closer and
closer to her goal. Jill recalls that she didn't like
school all the time either and that she often found it
very challenging. Sometimes it helps to remind herself
that because she stuck with it she now enjoys a career
that provides her with a paycheck and a lot of
personal satisfaction!
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This example illustrates that motivation
may begin with a particular desire but sustaining
motivation depends on the mental acts of digging deep,
keeping track of your progress, recalling past successes, and
self-encouragement. These kinds of mental acts may be much
more difficult after brain injury. The individual may very
well want to improve, but desire alone is not enough.
Motivation is highly dependent upon intact cognition.
Some injuries result in impulsiveness, a neurologic problem
that can interfere with motivation by disturbing the
individual's ability to regulate attention and emotions.
Brain injury may also reduce
awareness that makes it difficult to see there is a problem.
The individual may not be aware of their deficits and
therefore see no need for treatment.
Self-Awareness,
Identity and Reflection
The ability to see ourselves as others do, to
reflect on our abilities, our liabilities, our past
experiences, our future hopes, and to integrate all into a
coherent sense of self, into what we call
"identity," may be the most profound casualty of
brain injury.
Self-awareness begins in infancy. The infant’s fascination
with her hand or image in a mirror, the discovery that a push
propels a ball across the floor, and the realization that
words have power, are instances of self-awareness with which
we are all familiar. Throughout our lives we develop
self-awareness of our capacities and our limits.
Out of our various self-awareness's we create identity. Much
as an author creates a character in a book, with a unique
repertoire of strengths, frailties, and responses to life
circumstances, we shape our identity. Our identity represents
the set of characteristics by which we know ourselves and by
which we hope to be known. The core of our identity consists
of attitudes, beliefs, and values that are more or less stable
and that provide guidance for our decisions and actions
throughout our lives.
Identity is subject to change. In everyday
circumstances we may find our image of our self shifts
somewhat. We may feel more self assured, smarter, and more
important in some situations and around certain people. Life
challenges may change the way we think of ourselves--either
positively or negatively, depending upon how we respond to
them--and cause us to revise our overall sense of who we are.
Our sense of self may undergo even more dramatic changes when
we change physically, as a result of adolescence, injury, or
aging, for example. We may change when we encounter some life
experience that tests us in some way and reveals something
about us we had not been aware of. As a result of such “turning
points” people can change the way they think and feel about
themselves, and dramatically change the way they conduct their
lives as a result.
The feelings we have about our own identity we call
"self-esteem." We either approve (have high
self-esteem) or disapprove (have low self-esteem). Sometimes
we seesaw between the two. A person who is generally
self-approving tends to be more optimistic and hopeful. Self-disapproving
individuals tend to be less optimistic and less hopeful.
Self-esteem is a powerful determinant of our future because it
determines our levels of optimism and hope which tend to shape
our actions and decisions.
Self-awareness, identity, and self-esteem could not exist
without the capacity to reflect. Reflection is a cognitive
function that is characteristic of a normally functioning
brain. It is a remarkable ability to stand back from ourselves
and our circumstances and observe and evaluate, as if looking
at our reflection in a mirror. Most of us come equipped with a
sizeable mental mirror--an extraordinary capacity to reflect.
We can mentally view ourselves in the context of performing a
task, a social situation, or an entire lifetime.
Reflection is an act of "metacognition," meaning
that it is an act of thinking about the thinker. We utilize
this remarkable capacity through most of every day in both
small and large ways. When we think about what we have to do,
even as we continue to do what we are doing, we are
reflecting. When we guide an action to completion, keeping in
mind what we have done and what we have left to do, we are
reflecting. When we pause mentally, considering how best to
proceed, we are reflecting. When we sit alone in a quiet
moment to think about a particular event or about our life as
a whole, we are reflecting. Reflection is the basis of
understanding, insight and judgment, and it is the basis of
motivation, as discussed earlier.
After a brain injury, the capacity for reflection may be
diminished to varying degrees. The combination of problems
with attention, memory, thinking, and other cognitive
functions may throw our abilities to view and to guide our own
behavior, to gain insight and to exercise judgment, into a
confused and volatile state. Acting on impulse may be the only
option. It is understandable how all of this may lead to
feeling confused, anxious, even terrified or hopeless; to
dramatic mood swings and erratic behavior. Absent the capacity
to reflect, the sense of self is tossed about like a dingy in
a raging sea.
The essential goals of cognitive rehabilitation then are to
(a) promote the person’s capacity to communicate and
participate in treatment planning, (b) restore the capacity
for self-awareness and reflection and (c) to help the
individual re-construct a coherent, meaningful, and hopeful
identity. Problems with behavior, motivation, and ultimately,
failure to achieve a best recovery from brain injury, are all
the inevitable consequences of failing to adequately address
these areas. It all takes time, patience, support and a number
of interrelated approaches.
Cognitive
Therapy
| These comments
concerning therapy are based upon our experience at
the Northeast Center for Special Care, as well as the
author’s thirty-odd years of experience in brain
injury rehabilitation. It is worth pointing out that
while some practitioners (and researchers) operate
exclusively within acute care settings that typically
limit treatment to several weeks during the period
just after medical stabilization, our own experience
is derived of rehabilitation begun months or in some
cases years post-injury, and continuing for months or
years. In other words, Northeast Center for Special
Care provides intensive treatment for individuals with
a wide range of severity over a longer period of time
than in most other settings. We may be uniquely
positioned, therefore, to observe more varied patterns
of recovery than is commonly reported, and as one of
the largest brain injury rehabilitation programs in
the world, we may be able to develop approaches that
are varied and comprehensive to an extent that may be
impossible or seem unnecessary in other settings. |
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Occupational therapists,
psychologists, and speech-language pathologists, in
particular, may work very closely to support recovery of
self-awareness, reflection, and identity discussed earlier.
Improving other cognitive skills without paying specific
attention to development of these three areas will greatly
reduce chances for a best outcome. The individual must be
helped to tolerate feedback about their performance and
assisted in learning to self-evaluate objectively, always with
a high emphasis upon respect for self and with lots of
encouragement.
We have found it helpful to write out a first-person,
narrative account of what happened to them, what is being
worked on, and what the short and long term goals are. Having
all of this provided in narrative form helps many individuals
to see connections between different aspects of treatment. If
the individual is more disoriented, the narrative can begin
with a brief account of the individual’s pre-injury history.
Eventually the narrative should include a profile of the
individual’s strengths and weaknesses, with an emphasis on
strengths.
The writing of the narrative should gradually become the
responsibility of the individual receiving treatment and
should at all times reflect positively upon issues that are
most important to the person at that point in time. Another
important step is to have the individual learn to internalize
the information in the narrative by practicing the
presentation of the narrative to others--peers and family
members, for example. At first these presentations can be
readings of the narrative. Over time, presentations can be
made from an outline only. The outlines can be gradually faded
until the individual is able to present the material more or
less “by heart,” with only occasional prompting by a
therapist.
The effect of this approach is that it restores a basic sense
of identity. Our experience has been that once individuals
begin to internalize the narrative, they become more
spontaneous, interactive, and hopeful. We have also noted
improvements in memory.
This work can be developed in many ways. We consider it an
essential platform upon which higher levels of self awareness,
judgment, and identity reconstruction can occur. Concerning
the area of identity construction, interested readers are
referred to the excellent works of Mark Ylvisaker on this
subject.
Developing self-awareness and useful compensatory strategies
to high levels requires a patient, well-integrated approach
that is beyond the scope of this paper. The reader is referred
to the seminal works of Yehuda Ben-Yishay who is deservedly
considered the “Father of Cognitive Rehabilitation.” Many
of the approaches used at the Northeast Center for Special
Care had their conceptual origins in Dr. Ben-Yishay’s
exceptional body of work.
Virtually every person who has contact with the individual
served can participate in cognitive rehabilitation efforts.
Family members, dieticians, nurses, nurse aides, doctors,
social workers, recreation therapists, and others responsible
for helping the individual can be taught methods for
stabilizing mood, for eliciting attention to tasks at hand,
for providing information in a way most likely to be
understood, for helping the individual use memory-aids, and
for supporting attempts at communication, decision making, and
problem solving. Virtually every interaction can contribute to
the therapeutic effort if individuals involved are given some
pertinent knowledge about brain injury and cognitive
disability.
The individual served must not spend most of the day waiting
passively for a therapist and watching TV. This is a major
weakness of programs within many health care settings. Normal
cognitive function is organized by self-direction. Individuals
who do not have enough to do may appear more impaired than
they are and take longer to recover than those who do. It is
important that there are enough high quality activities, in
addition to formal therapies, so that the individual can move
"under their own steam" through a day full of
people, places, and challenges, with a gradual reduction in
the amount of assistance provided. This type of approach
multiplies the effects of formal therapies many times over.
There are many activities that can be utilized to improve the
basic cognitive functions of attention, orientation, memory,
visual perception, language, thinking, and executive control.
Among these are so-called "alternative" therapeutic
activities such as video and board games, sports activities,
painting, singing, crafts, and any other activity that is
personally satisfying and that challenges cognition. A
stimulating recreational therapy program is a key ingredient
of cognitive rehabilitation.
Art, dance, music, theatre, and writing workshops conducted by
artists familiar with brain injury may have a unique appeal
and benefit. The arts are fun and engaging and can produce
uniquely high levels of cognitive and physical challenge,
personal satisfaction and self-esteem.
There are promising high tech therapies as well. Among these,
EEG biofeedback, medications, and computer-mediated therapies
that may improve attention, thinking, and memory. Palm-pilots,
PC’s, pagers, and other electronic aids may be used with
excellent results to support memory and self-organization.
Some of the best therapies are everyday activities such as
using the telephone, writing an e-mail, making a sandwich for
lunch, taking the dog for a walk, going shopping, and going to
work. Opportunities for normal activities like these should be
provided as soon as possible and supported by the treatment
program.
Severely impaired individuals in particular may relate far
better to everyday and recreational activities than to formal
therapies. Their engagement in such activities in the early
stage of recovery can often lead to enough improvement in
cognition and self awareness so that the individual can
eventually participate in more focused, traditional
treatments. For example, we have used activities such as
sorting mail in the facility’s post office to engage a very
severely impaired man emerging from coma. We had tried several
other approaches and nothing “grabbed” him. Had we not had
this opportunity at our disposal, we might have underestimated
his ability to be engaged and then missed a significant
treatment opportunity.
Unfortunately, in most rehabilitation settings individuals are
limited to formal therapies and must make progress steadily
and quickly in order to qualify for the few weeks of treatment
they are allotted. In our experience, individuals who have
brain injuries recover in many different ways and an
extraordinary variety is necessary to address the highly
individual tendencies, tastes, abilities, and needs displayed
by all human beings, including those recovering from a brain
injury.
Emotional
Adjustment
Cognitive rehabilitation can help the individual
become aware of what they can do and how they can achieve what
is important to them. It must of course also include awareness
of the injury and its consequences. Acquiring this awareness
is a difficult aspect of recovery and it must be managed
skillfully. It must be managed by a collaboration of family,
friends, and professionals who are capable of establishing
trust, who are solidly and convincingly hopeful, and who can
help the individual identify their strengths, resources, and
opportunities. One of the unique talents a brain injury
specialist must possess is the ability to replace self-doubt
with belief that progress is not only possible, but likely,
one step at a time.
Efforts to think and to manage everyday situations must be
supported continuously, with great care and competence, so
that the individual gradually becomes able to move through
seconds, then minutes, and then hours and days at a time, with
a more continuous calm, clarity, purpose, and success.
Virtually every hour of the day can be engineered to count
toward improved mental function, self-awareness, and emotional
stability by providing skilled, intensive therapeutic support.
Lots of simple actions such as greeting the individual
positively each day, previewing and planning the day's
activities each morning, checking-in frequently with the
individual, always speaking respectfully, answering each
request patiently, helping the individual reason through
everyday challenges, encouraging a sense of humor and
acceptance, and at the end of the day, reflecting back on
small triumphs, and buoying hope are all enormously valuable.
Having enough of these kinds of interactions is an essential
key to sustaining high levels of awareness, performance, and
motivation.
Working
Through Roadblocks
The art
of cognitive rehabilitation is in knowing how to formulate
meaningful, realistic goals, how to engage and motivate the
individual, how to encourage persistence, and elicit awareness
of progress. There are many clinical judgments required to
sustain progress and to work through the daily interference of
anger, self-doubt, and other potential roadblocks. Skilled
therapists are able to recognize when it is time to switch
from one goal to another, from one therapeutic activity to
another, from one approach to another, or from one
rehabilitation setting to another. The ongoing need for a
supportive, overtly hopeful environment, for lots of
personally meaningful daily activity, and for a patient,
persistent effort by and for family to help the individual
find self-acceptance cannot be overly stressed. Sometimes the
only roadblock is time. We have seen a number of individuals
who, despite our best efforts, seemed to have “plateaued,”
only to suddenly begin to progress and benefit from treatment
again at a later time.
The Limits of Progress
Some individuals with cognitive impairment
improve for years after their injury. Some progress "slow
and steady" while others may have episodes of improvement
that start and stop several times over several years. We
simply don't know why some individuals recover more cognitive
ability than others and what accounts for different patterns
of recovery.
Rehabilitation time is often so limited and research so poorly
funded that it is unlikely we will know the true potential for
long term recovery until there is a public outcry for change
in reimbursement rules and an increase in funding for
research. Much of the most meaningful recovery can take place
in the post-acute phase of recovery. Post-acute
rehabilitation, however, is rarely reimbursed by insurance.
In any case, no therapy, including cognitive rehabilitation,
can ever guarantee progress. It is almost certain that
a significant injury will leave a permanent mark on the
person's cognitive ability, personality, and relationships.
This is a reality that all individuals who have had an injury,
their families, and brain injury specialists must face each
and every day.
Ultimate Recovery: A Conspiracy of Belief
One of the great dangers following the trauma of brain
injury is that we may become emotionally blindered and unable to
see anything but impairment. We may also romanticize about how
perfect everything was before the injury. A narrowed and
distorted perspective on life may be the ultimate disability
affecting family members as well as the person with the
injury.
Is it possible to recover hope, belief in self, a sense of
wholeness, even joy? Sure it is, if our focus is not so narrow
that all we see are deficits and loss. This will be enormously
difficult at first. But eventually, a little bit at a time, we
must try to put brain injury in the context of the life and
limitations we all face, with or without a brain injury.
Fact: Life is challenging for everyone. In fact, life is extremely
challenging for everyone. And one of the greatest
challenges of all is to feel we are important, worthy, and
that our lives matter. Meaning is not something we find by
accident. Meaning is something we must actively seek and
create for ourselves through the beliefs that we cultivate.
The major barriers to “ultimate recovery” are the beliefs
and habits we had prior to brain injury, the taking for
granted of everyday experience, the thoughtless indulgence in
any number of daily experiences that served as short cuts to
feeling worthwhile; the belief that status, material
possessions, food, sex, alcohol would provide a satisfactory
substitute for coming to terms with life, its limitations, as
well as its simple, yet profound joys.
Happiness and joy come mostly from small things: a sunny day,
a welcome breeze, the flight of birds, a child's laughter, a
well-hit baseball, the smell of cinnamon, a warm smile, a
friend... These and thousands of other experiences are within
our grasp if we are willing to take notice and to believe in
their importance, in their “enoughness.”
A second step is to work on reducing negative judgment. But we
are born and bred of a society of self-judgers and
self-criticizers. We hold the power over how those in our
lives will be evaluated, beginning with ourselves. Red hair,
no hair, being skinny, being fat, shy, outgoing, or any other
human trait do not, or should not determine a person's
meaning, importance, or worthiness. Neither should a
wheelchair, a speech deficit, a memory disorder, or impulsive
behavior. Goodness, beauty, wisdom, or any attribute we may
wish for are in the eye of the beholder. So is
"imperfection" in the eye of the beholder; so is
"inadequacy," "disability,"
"futility," and many other judgments we make
throughout our lives.
Being highly self-critical is so common today that we can
regard it as "normal." The evidence and the result
of this is that anxiety-related illness, suicide, divorce, and
depression are rampant in our society. Even those of us who
come off as self-assured are likely to be covering up beliefs
that we are fundamentally inadequate. And remember, this is
"normal" behavior. There is no unique connection
between feeling inadequate and brain injury.
Here are some questions to consider: If we all struggle with
self-acceptance, isn't a person with a brain injury who cannot
accept themselves just behaving "normally" (like the
rest of us)? And isn't the quest for self-acceptance a quest
that unites us and equalizes us, those of us with and without
brain injury?
A third major step is to let go of anger. When many of us
consider ourselves and our own lives we are self-critical to
the point of going through life angry because we are not one
thing or another. Let go. Just. Let. Go. It feels better to
feel good than to feel angry. Try it. Smile right now no
matter how you feel. If you did it and you felt even a little
better you experienced your power to choose your mood. Anger
is a choice. So is being happy. This power to choose needs to
be exercised daily until you’re good at it.
Is lasting happiness truly within our grasp? Certainly, if we
are willing to join together and conspire to believe in it,
and to create happiness by engaging each other with the
belief that each of us is adequate, worthy, and good, a little
bit and a little more each day. When the individual who has
been injured is engaged in a family or community of such
conspirators the effect can transform even a tragedy of the
flesh into a triumph of the spirit.
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