Schizophrenia is a chronic, severe, and disabling brain
disease. Approximately 1 percent of the population develops
schizophrenia during their lifetime – more than 2 million Americans
suffer from the illness in a given year. Although schizophrenia affects
men and women with equal frequency, the disorder often appears earlier in
men, usually in the late teens or early twenties, than in women, who are
generally affected in the twenties to early thirties. People with
schizophrenia often suffer terrifying symptoms such as hearing internal
voices not heard by others, or believing that other people are reading
their minds, controlling their thoughts, or plotting to harm them. These
symptoms may leave them fearful and withdrawn. Their speech and behavior
can be so disorganized that they may be incomprehensible or frightening to
others. Available treatments can relieve many symptoms, but most people
with schizophrenia continue to suffer some symptoms throughout their
lives; it has been estimated that no more than one in five individuals
This is a time of hope for people with
schizophrenia and their families. Research
is gradually leading to new and safer medications and unraveling the
complex causes of the disease. Scientists are using many approaches from
the study of molecular genetics to the study of populations to learn about
schizophrenia. Methods of imaging the brain’s structure and function
hold the promise of new insights into the disorder.
Schizophrenia As An Illness
Schizophrenia is found all over the world. The
severity of the symptoms and long-lasting, chronic pattern of
schizophrenia often cause a high degree of disability. Medications and
other treatments for schizophrenia, when used regularly and as prescribed,
can help reduce and control the distressing symptoms of the illness.
However, some people are not greatly helped by available treatments or may
prematurely discontinue treatment because of unpleasant side effects or
other reasons. Even when treatment is effective, persisting consequences
of the illness – lost opportunities, stigma, residual symptoms, and
medication side effects – may be very troubling.
The first signs of schizophrenia often appear as
confusing, or even shocking, changes in behavior. Coping with the symptoms
of schizophrenia can be especially difficult for family members who
remember how involved or vivacious a person was before they became ill.
The sudden onset of severe psychotic symptoms is referred to as an
“acute” phase of schizophrenia. “Psychosis,” a common condition in
schizophrenia, is a state of mental impairment marked by hallucinations,
which are disturbances of sensory perception, and/or delusions, which are
false yet strongly held personal beliefs that result from an inability to
separate real from unreal experiences. Less obvious symptoms, such as
social isolation or withdrawal, or unusual speech, thinking, or behavior,
may precede, be seen along with, or follow the psychotic symptoms.
Some people have only one such psychotic episode;
others have many episodes during a lifetime, but lead relatively normal
lives during the interim periods. However, the individual with
“chronic” schizophrenia, or a continuous or recurring pattern of
illness, often does not fully recover normal functioning and typically
requires long-term treatment, generally including medication, to control
Making A Diagnosis
It is important to rule out other illnesses, as
sometimes people suffer severe mental symptoms or even psychosis due to
undetected underlying medical conditions. For this reason, a medical
history should be taken and a physical examination and laboratory tests
should be done to rule out other possible causes of the symptoms before
concluding that a person has schizophrenia. In addition, since commonly
abused drugs may cause symptoms resembling schizophrenia, blood or urine
samples from the person can be tested at hospitals or physicians’
offices for the presence of these drugs.
At times, it is difficult to tell one mental
disorder from another. For instance, some people with symptoms of
schizophrenia exhibit prolonged extremes of elated or depressed mood, and
it is important to determine whether such a patient has schizophrenia or
actually has a manic-depressive (or bipolar) disorder or major depressive
disorder. Persons whose symptoms cannot be clearly categorized are
sometimes diagnosed as having a “schizoaffective disorder.”
Can Children Have Schizophrenia?
Children over the age of five can develop
schizophrenia, but it is very rare before adolescence. Although some
people who later develop schizophrenia may have seemed different from
other children at an early age, the psychotic symptoms of schizophrenia
– hallucinations and delusions – are extremely uncommon before
The World of People With Schizophrenia
- Distorted Perceptions of Reality
People with schizophrenia may have perceptions of
reality that are strikingly different from the reality seen and shared by
others around them. Living in a world distorted by hallucinations and
delusions, individuals with schizophrenia may feel frightened, anxious,
In part because of the unusual realities they
experience, people with schizophrenia may behave very differently at
various times. Sometimes they may seem distant, detached, or preoccupied
and may even sit as rigidly as a stone, not moving for hours or uttering a
sound. Other times they may move about constantly – always occupied,
appearing wide-awake, vigilant, and alert.
- Hallucinations and Illusions
Hallucinations and illusions are disturbances of
perception that are common in people suffering from schizophrenia.
Hallucinations are perceptions that occur without connection to an
appropriate source. Although hallucinations can occur in any sensory form
– auditory (sound), visual (sight), tactile (touch), gustatory (taste),
and olfactory (smell) – hearing voices that other people do not hear is
the most common type of hallucination in schizophrenia. Voices may
describe the patient’s activities, carry on a conversation, warn of
impending dangers, or even issue orders to the individual. Illusions, on
the other hand, occur when a sensory stimulus is present but is
incorrectly interpreted by the individual.
Delusions are false personal beliefs that are not
subject to reason or contradictory evidence and are not explained by a
person’s usual cultural concepts. Delusions may take on different
themes. For example, patients suffering from paranoid-type symptoms –
roughly one-third of people with schizophrenia – often have delusions of
persecution, or false and irrational beliefs that they are being cheated,
harassed, poisoned, or conspired against. These patients may believe that
they, or a member of the family or someone close to them, are the focus of
this persecution. In addition, delusions of grandeur, in which a person
may believe he or she is a famous or important figure, may occur in
schizophrenia. Sometimes the delusions experienced by people with
schizophrenia are quite bizarre; for instance, believing that a neighbor
is controlling their behavior with magnetic waves; that people on
television are directing special messages to them; or that their thoughts
are being broadcast aloud to others.
Substance abuse is a common concern of the
family and friends of people with schizophrenia. Since some people
who abuse drugs may show symptoms similar to those of
schizophrenia, people with schizophrenia may be mistaken for
people "high on drugs.” While most researchers do not
believe that substance abuse causes schizophrenia, people who have
schizophrenia often abuse alcohol and/or drugs, and may have
particularly bad reactions to certain drugs. Substance abuse can
reduce the effectiveness of treatment for schizophrenia.
Stimulants (such as amphetamines or cocaine) may cause major
problems for patients with schizophrenia, as may PCP or marijuana.
In fact, some people experience a worsening of their schizophrenic
symptoms when they are taking such drugs. Substance abuse also
reduces the likelihood that patients will follow the treatment
plans recommended by their doctors.
- Schizophrenia and Nicotine
The most common form of substance use
disorder in people with schizophrenia is nicotine dependence due
to smoking. While the prevalence of smoking in the U.S. population
is about 25 to 30 percent, the prevalence among people with
schizophrenia is approximately three times as high. Research has
shown that the relationship between smoking and schizophrenia is
complex. Although people with schizophrenia may smoke to self
medicate their symptoms, smoking has been found to interfere with
the response to antipsychotic drugs. Several studies have found
that schizophrenia patients who smoke need higher doses of
antipsychotic medication. Quitting smoking may be especially
difficult for people with schizophrenia, because the symptoms of
nicotine withdrawal may cause a temporary worsening of
schizophrenia symptoms. However, smoking cessation strategies that
include nicotine replacement methods may be effective. Doctors
should carefully monitor medication dosage and response when
patients with schizophrenia either start or stop smoking.
Schizophrenia often affects a person’s ability
to “think straight.” Thoughts may come and go rapidly; the person may
not be able to concentrate on one thought for very long and may be easily
distracted, unable to focus attention.
People with schizophrenia may not be able to sort
out what is relevant and what is not relevant to a situation. The person
may be unable to connect thoughts into logical sequences, with thoughts
becoming disorganized and fragmented. This lack of logical continuity of
thought, termed “thought disorder,” can make conversation very
difficult and may contribute to social isolation. If people cannot make
sense of what an individual is saying, they are likely to become
uncomfortable and tend to leave that person alone.
People with schizophrenia often show “blunted”
or “flat” affect. This refers to a severe reduction in emotional
expressiveness. A person with schizophrenia may not show the signs of
normal emotion, perhaps may speak in a monotonous voice, have diminished
facial expressions, and appear extremely apathetic. The person may
withdraw socially, avoiding contact with others; and when forced to
interact, he or she may have nothing to say, reflecting “impoverished
thought.” Motivation can be greatly decreased, as can interest in or
enjoyment of life. In some severe cases, a person can spend entire days
doing nothing at all, even neglecting basic hygiene. These problems with
emotional expression and motivation, which may be extremely troubling to
family members and friends, are symptoms of schizophrenia – not
character flaws or personal weaknesses.
At times, normal individuals may feel, think, or
act in ways that resemble schizophrenia. Normal people may sometimes be
unable to “think straight.” They may become extremely anxious, for
example, when speaking in front of groups and may feel confused, be unable
to pull their thoughts together, and forget what they had intended to say.
This is not schizophrenia. At the same time, people with schizophrenia do
not always act abnormally. Indeed, some people with the illness can appear
completely normal and be perfectly responsible, even while they experience
hallucinations or delusions. An individual’s behavior may change over
time, becoming bizarre if medication is stopped and returning closer to
normal when receiving appropriate treatment.
Schizophrenia Is Not
There is a common notion that
schizophrenia is the same as "split personality” – a Dr.
Jekyll-Mr. Hyde switch in character.
This is not correct.
Are People With Schizophrenia Likely To Be
News and entertainment media tend to link mental
illness and criminal violence; however, studies indicate that except for
those persons with a record of criminal violence before becoming ill,
and those with substance abuse or alcohol problems, people with
schizophrenia are not especially prone to violence. Most individuals with
schizophrenia are not violent; more typically, they are withdrawn and
prefer to be left alone. Most violent crimes are not committed by persons
with schizophrenia, and most persons with schizophrenia do not commit
violent crimes. Substance abuse significantly raises the rate of violence
in people with schizophrenia but also in people who do not have any mental
illness. People with paranoid and psychotic symptoms, which can become
worse if medications are discontinued, may also be at higher risk for
violent behavior. When violence does occur, it is most frequently targeted
at family members and friends, and more often takes place at home.
What About Suicide?
Suicide is a serious danger in people who have
schizophrenia. If an individual tries to commit suicide or threatens to do
so, professional help should be sought immediately. People with
schizophrenia have a higher rate of suicide than the general population.
Approximately 10 percent of people with schizophrenia (especially younger
adult males) commit suicide. Unfortunately, the prediction of suicide in
people with schizophrenia can be especially difficult.
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There is no known single cause of schizophrenia.
Many diseases, such as heart disease, result from an interplay of genetic,
behavioral, and other factors; and this may be the case for schizophrenia
as well. Scientists do not yet understand all of the factors necessary to
produce schizophrenia, but all the tools of modern biomedical research are
being used to search for genes, critical moments in brain development, and
other factors that may lead to the illness.
Is Schizophrenia Inherited?
It has long been known that schizophrenia runs in
families. People who have a close relative with schizophrenia are more
likely to develop the disorder than are people who have no relatives with
the illness. For example, a monozygotic (identical) twin of a person with
schizophrenia has the highest risk – 40 to 50 percent – of developing
the illness. A child whose parent has schizophrenia has about a 10 percent
chance. By comparison, the risk of schizophrenia in the general population
is about 1 percent.
Scientists are studying genetic factors in
schizophrenia. It appears likely that multiple genes are involved in
creating a predisposition to develop the disorder. In addition, factors
such as prenatal difficulties like intrauterine starvation or viral
infections, perinatal complications, and various nonspecific stressors,
seem to influence the development of schizophrenia. However, it is not yet
understood how the genetic predisposition is transmitted, and it cannot
yet be accurately predicted whether a given person will or will not
develop the disorder.
Several regions of the human genome are being
investigated to identify genes that may confer susceptibility for
schizophrenia. The strongest evidence to date leads to chromosomes 13 and
6 but remains unconfirmed. Identification of specific genes involved in
the development of schizophrenia will provide important clues into what
goes wrong in the brain to produce and sustain the illness and will guide
the development of new and better treatments. To learn more about the
genetic basis for schizophrenia, the NIMH has established a Schizophrenia
Genetics Initiative (see Web site at http://www-grb.nimh.nih.gov/gi.html)
that is gathering data from a large number of families of people with the
Is Schizophrenia Associated With A Chemical
Defect In The Brain?
Basic knowledge about brain chemistry and its link
to schizophrenia is expanding rapidly. Neurotransmitters, substances that
allow communication between nerve cells, have long been thought to be
involved in the development of schizophrenia. It is likely, although not
yet certain, that the disorder is associated with some imbalance of the
complex, interrelated chemical systems of the brain, perhaps involving the
neurotransmitters dopamine and glutamate. This area of research is
Is Schizophrenia Caused By A Physical
Abnormality In The Brain?
There have been dramatic advances in neuroimaging
technology that permit scientists to study brain structure and function in
living individuals. Many studies of people with schizophrenia have found
abnormalities in brain structure (for example, enlargement of the
fluid-filled cavities, called the ventricles, in the interior of the
brain, and decreased size of certain brain regions) or function (for
example, decreased metabolic activity in certain brain regions). It should
be emphasized that these abnormalities are quite subtle and are not
characteristic of all people with schizophrenia, nor do they occur only
in individuals with this illness. Microscopic studies of brain tissue
after death have also shown small changes in distribution or number of
brain cells in people with schizophrenia. It appears that many (but
probably not all) of these changes are present before an individual
becomes ill, and schizophrenia may be, in part, a disorder in development
of the brain.
Developmental neurobiologists funded by the
National Institute of Mental Health (NIMH) have found that schizophrenia
may be a developmental disorder resulting when neurons form inappropriate
connections during fetal development. These errors may lie dormant until
puberty, when changes in the brain that occur normally during this
critical stage of maturation interact adversely with the faulty
connections. This research has spurred efforts to identify prenatal
factors that may have some bearing on the apparent developmental
In other studies, investigators using
brain-imaging techniques have found evidence of early biochemical changes
that may precede the onset of disease symptoms, prompting examination of
the neural circuits that are most likely to be involved in producing those
symptoms. Meanwhile, scientists working at the molecular level are
exploring the genetic basis for abnormalities in brain development and in
the neurotransmitter systems regulating brain function.
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Since schizophrenia may not be a single condition
and its causes are not yet known, current treatment methods are based on
both clinical research and experience. These approaches are chosen on the
basis of their ability to reduce the symptoms of schizophrenia and to
lessen the chances that symptoms will return.
What About Medications?
Antipsychotic medications have been available
since the mid-1950s. They have greatly improved the outlook for individual
patients. These medications reduce the psychotic symptoms of schizophrenia
and usually allow the patient to function more effectively and
appropriately. Antipsychotic drugs are the best treatment now available,
but they do not “cure” schizophrenia or ensure that there will be no
further psychotic episodes. The choice and dosage of medication can be
made only by a qualified physician who is well trained in the medical
treatment of mental disorders. The dosage of medication is individualized
for each patient, since people may vary a great deal in the amount of drug
needed to reduce symptoms without producing troublesome side effects.
The large majority of people with schizophrenia
show substantial improvement when treated with antipsychotic drugs. Some
patients, however, are not helped very much by the medications and a few
do not seem to need them. It is difficult to predict which patients will
fall into these two groups and to distinguish them from the large majority
of patients who do benefit from treatment with antipsychotic drugs.
A number of new antipsychotic drugs (the so-called
“atypical antipsychotics”) have been introduced since 1990. The first
of these, clozapine (Clozaril®), has been shown to be more effective than
other antipsychotics, although the possibility of severe side effects –
in particular, a condition called agranulocytosis (loss of the white blood
cells that fight infection) – requires that patients be monitored with
blood tests every one or two weeks. Even newer antipsychotic drugs, such
as risperidone (Risperdal®) and olanzapine (Zyprexa®), are safer than
the older drugs or clozapine, and they also may be better tolerated. They
may or may not treat the illness as well as clozapine, however. Several
additional antipsychotics are currently under development.
Antipsychotic drugs are often very effective in
treating certain symptoms of schizophrenia, particularly hallucinations
and delusions; unfortunately, the drugs may not be as helpful with other
symptoms, such as reduced motivation and emotional expressiveness. Indeed,
the older antipsychotics (which also went by the name of
“neuroleptics”), medicines like haloperidol (Haldol®) or
chlorpromazine (Thorazine®), may even produce side effects that resemble
the more difficult to treat symptoms. Often, lowering the dose or
switching to a different medicine may reduce these side effects; the newer
medicines, including olanzapine (Zyprexa®), quetiapine (Seroquel®), and
risperidone (Risperdal®), appear less likely to have this problem.
Sometimes when people with schizophrenia become depressed, other symptoms
can appear to worsen. The symptoms may improve with the addition of an
Patients and families sometimes become worried
about the antipsychotic medications used to treat schizophrenia. In
addition to concern about side effects, they may worry that such drugs
could lead to addiction. However, antipsychotic medications do not produce
a “high” (euphoria) or addictive behavior in people who take them.
Another misconception about antipsychotic drugs is
that they act as a kind of mind control, or a “chemical straitjacket.”
Antipsychotic drugs used at the appropriate dosage do not “knock out”
people or take away their free will. While these medications can be
sedating, and while this effect can be useful when treatment is initiated
particularly if an individual is quite agitated, the utility of the drugs
is not due to sedation but to their ability to diminish the
hallucinations, agitation, confusion, and delusions of a psychotic
episode. Thus, antipsychotic medications should eventually help an
individual with schizophrenia to deal with the world more rationally.
How Long Should People With Schizophrenia Take
Antipsychotic medications reduce the risk of
future psychotic episodes in patients who have recovered from an acute
episode. Even with continued drug treatment, some people who have
recovered will suffer relapses. Far higher relapse rates are seen when
medication is discontinued. In most cases, it would not be accurate to say
that continued drug treatment “prevents” relapses; rather, it reduces
their intensity and frequency. The treatment of severe psychotic symptoms
generally requires higher dosages than those used for maintenance
treatment. If symptoms reappear on a lower dosage, a temporary increase in
dosage may prevent a full-blown relapse.
Because relapse of illness is more likely when
antipsychotic medications are discontinued or taken irregularly, it is
very important that people with schizophrenia work with their doctors and
family members to adhere to their treatment plan. Adherence to
treatment refers to the degree to which patients follow the treatment
plans recommended by their doctors. Good adherence involves taking
prescribed medication at the correct dose and proper times each day,
attending clinic appointments, and/or carefully following other treatment
procedures. Treatment adherence is often difficult for people with
schizophrenia, but it can be made easier with the help of several
strategies and can lead to improved quality of life.
There are a variety of reasons why people with
schizophrenia may not adhere to treatment. Patients may not believe they
are ill and may deny the need for medication, or they may have such
disorganized thinking that they cannot remember to take their daily doses.
Family members or friends may not understand schizophrenia and may
inappropriately advise the person with schizophrenia to stop treatment
when he or she is feeling better. Physicians, who play an important role
in helping their patients adhere to treatment, may neglect to ask patients
how often they are taking their medications, or may be unwilling to
accommodate a patient’s request to change dosages or try a new
treatment. Some patients report that side effects of the medications seem
worse than the illness itself. Further, substance abuse can interfere with
the effectiveness of treatment, leading patients to discontinue
medications. When a complicated treatment plan is added to any of these
factors, good adherence may become even more challenging.
Fortunately, there are many strategies that
patients, doctors, and families can use to improve adherence and prevent
worsening of the illness. Some antipsychotic medications, including
haloperidol (Haldol®), fluphenazine (Prolixin®), perphenazine (Trilafon®)
and others, are available in long-acting injectable forms that eliminate
the need to take pills every day. A major goal of current research on
treatments for schizophrenia is to develop a wider variety of long-acting
antipsychotics, especially the newer agents with milder side effects,
which can be delivered through injection. Medication calendars or pill
boxes labeled with the days of the week can help patients and caregivers
know when medications have or have not been taken. Using electronic timers
that beep when medications should be taken, or pairing medication taking
with routine daily events like meals, can help patients remember and
adhere to their dosing schedule. Engaging family members in observing oral
medication taking by patients can help ensure adherence. In addition,
through a variety of other methods of adherence monitoring, doctors can
identify when pill taking is a problem for their patients and can work
with them to make adherence easier. It is important to help motivate
patients to continue taking their medications properly.
In addition to any of these adherence strategies,
patient and family education about schizophrenia, its symptoms, and the
medications being prescribed to treat the disease is an important part of
the treatment process and helps support the rationale for good adherence.
What About Side Effects?
Antipsychotic drugs, like virtually all
medications, have unwanted effects along with their beneficial effects.
During the early phases of drug treatment, patients may be troubled by
side effects such as drowsiness, restlessness, muscle spasms, tremor, dry
mouth, or blurring of vision. Most of these can be corrected by lowering
the dosage or can be controlled by other medications. Different patients
have different treatment responses and side effects to various
antipsychotic drugs. A patient may do better with one drug than another.
The long-term side effects of antipsychotic drugs
may pose a considerably more serious problem. Tardive dyskinesia (TD) is a
disorder characterized by involuntary movements most often affecting the
mouth, lips, and tongue, and sometimes the trunk or other parts of the
body such as arms and legs. It occurs in about 15 to 20 percent of
patients who have been receiving the older, “typical” antipsychotic
drugs for many years, but TD can also develop in patients who have been
treated with these drugs for shorter periods of time. In most cases, the
symptoms of TD are mild, and the patient may be unaware of the movements.
Antipsychotic medications developed in recent
years all appear to have a much lower risk of producing TD than the older,
traditional antipsychotics. The risk is not zero, however, and they can
produce side effects of their own such as weight gain. In addition, if
given at too high of a dose, the newer medications may lead to problems
such as social withdrawal and symptoms resembling Parkinson’s disease, a
disorder that affects movement. Nevertheless, the newer antipsychotics are
a significant advance in treatment, and their optimal use in people with
schizophrenia is a subject of much current research.
What About Psychosocial Treatments?
Antipsychotic drugs have proven to be crucial in
relieving the psychotic symptoms of schizophrenia – hallucinations,
delusions, and incoherence – but are not consistent in relieving the
behavioral symptoms of the disorder. Even when patients with schizophrenia
are relatively free of psychotic symptoms, many still have extraordinary
difficulty with communication, motivation, self-care, and establishing and
maintaining relationships with others. Moreover, because patients with
schizophrenia frequently become ill during the critical career-forming
years of life (e.g., ages 18 to 35), they are less likely to complete the
training required for skilled work. As a result, many with schizophrenia
not only suffer thinking and emotional difficulties, but lack social and
work skills and experience as well.
It is with these psychological, social, and
occupational problems that psychosocial treatments may help most. While
psychosocial approaches have limited value for acutely psychotic patients
(those who are out of touch with reality or have prominent hallucinations
or delusions), they may be useful for patients with less severe symptoms
or for patients whose psychotic symptoms are under control. Numerous forms
of psychosocial therapy are available for people with schizophrenia, and
most focus on improving the patient’s social functioning – whether in
the hospital or community, at home, or on the job. Some of these
approaches are described here. Unfortunately, the availability of
different forms of treatment varies greatly from place to place.
Broadly defined, rehabilitation includes a wide
array of non-medical interventions for those with schizophrenia.
Rehabilitation programs emphasize social and vocational training to help
patients and former patients overcome difficulties in these areas.
Programs may include vocational counseling, job training, problem-solving
and money management skills, use of public transportation, and social
skills training. These approaches are important for the success of the
community-centered treatment of schizophrenia, because they provide
discharged patients with the skills necessary to lead productive lives
outside the sheltered confines of a mental hospital.
Individual psychotherapy involves regularly
scheduled talks between the patient and a mental health professional such
as a psychiatrist, psychologist, psychiatric social worker, or nurse. The
sessions may focus on current or past problems, experiences, thoughts,
feelings, or relationships. By sharing experiences with a trained empathic
person – talking about their world with someone outside it –
individuals with schizophrenia may gradually come to understand more about
themselves and their problems. They can also learn to sort out the real
from the unreal and distorted. Recent studies indicate that supportive,
reality-oriented, individual psychotherapy, and cognitive-behavioral
approaches that teach coping and problem-solving skills, can be beneficial
for outpatients with schizophrenia. However, psychotherapy is not a
substitute for antipsychotic medication, and it is most helpful once drug
treatment first has relieved a patient’s psychotic symptoms.
Very often, patients with schizophrenia are
discharged from the hospital into the care of their family; so it is
important that family members learn all they can about schizophrenia and
understand the difficulties and problems associated with the illness. It
is also helpful for family members to learn ways to minimize the
patient’s chance of relapse – for example, by using different
treatment adherence strategies – and to be aware of the various kinds of
outpatient and family services available in the period after
hospitalization. Family “psychoeducation,” which includes teaching
various coping strategies and problem-solving skills, may help families
deal more effectively with their ill relative and may contribute to an
improved outcome for the patient.
Self-help groups for people and families dealing
with schizophrenia are becoming increasingly common. Although not led by a
professional therapist, these groups may be therapeutic because members
provide continuing mutual support as well as comfort in knowing that they
are not alone in the problems they face. Self-help groups may also serve
other important functions. Families working together can more effectively
serve as advocates for needed research and hospital and community
treatment programs. Patients acting as a group rather than individually
may be better able to dispel stigma and draw public attention to such
abuses as discrimination against the mentally ill.
Family and peer support and advocacy groups are
very active and provide useful information and assistance for patients and
families of patients with schizophrenia and other mental disorders. A list
of some of these organizations is included at the end of this document.
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A patient's support system may come from several
sources, including the family, a professional residential or day program
provider, shelter operators, friends or roommates, professional case
managers, churches and synagogues, and others. Because many patients live
with their families, the following discussion frequently uses the term
"family." However, this should not be taken to imply that
families ought to be the primary support system.
There are numerous situations in which patients
with schizophrenia may need help from people in their family or community.
Often, a person with schizophrenia will resist treatment, believing that
delusions or hallucinations are real and that psychiatric help is not
required. At times, family or friends may need to take an active role in
having them seen and evaluated by a professional. The issue of civil
rights enters into any attempts to provide treatment. Laws protecting
patients from involuntary commitment have become very strict, and families
and community organizations may be frustrated in their efforts to see that
a severely mentally ill individual gets needed help. These laws vary from
State to State; but generally, when people are dangerous to themselves or
others due to a mental disorder, the police can assist in getting them an
emergency psychiatric evaluation and, if necessary, hospitalization. In
some places, staff from a local community mental health center can
evaluate an individual's illness at home if he or she will not voluntarily
go in for treatment.
Sometimes only the family or others close to the
person with schizophrenia will be aware of strange behavior or ideas that
the person has expressed. Since patients may not volunteer such
information during an examination, family members or friends should ask to
speak with the person evaluating the patient so that all relevant
information can be taken into account.
Ensuring that a person with schizophrenia
continues to get treatment after hospitalization is also important. A
patient may discontinue medications or stop going for follow-up treatment,
often leading to a return of psychotic symptoms. Encouraging the patient
to continue treatment and assisting him or her in the treatment process
can positively influence recovery. Without treatment, some people with
schizophrenia become so psychotic and disorganized that they cannot care
for their basic needs, such as food, clothing, and shelter. All too often,
people with severe mental illnesses such as schizophrenia end up on the
streets or in jails, where they rarely receive the kinds of treatment they
Those close to people with schizophrenia are often
unsure of how to respond when patients make statements that seem strange
or are clearly false. For the individual with schizophrenia, the bizarre
beliefs or hallucinations seem quite real – they are not just
"imaginary fantasies." Instead of “going along with” a
person's delusions, family members or friends can tell the person that
they do not see things the same way or do not agree with his or her
conclusions, while acknowledging that things may appear otherwise to the
It may also be useful for those who know the
person with schizophrenia well to keep a record of what types of symptoms
have appeared, what medications (including dosage) have been taken, and
what effects various treatments have had. By knowing what symptoms have
been present before, family members may know better what to look for in
the future. Families may even be able to identify some "early warning
signs" of potential relapses, such as increased withdrawal or changes
in sleep patterns, even better and earlier than the patients themselves.
Thus, return of psychosis may be detected early and treatment may prevent
a full-blown relapse. Also, by knowing which medications have helped and
which have caused troublesome side effects in the past, the family can
help those treating the patient to find the best treatment more quickly.
In addition to involvement in seeking help,
family, friends, and peer groups can provide support and encourage the
person with schizophrenia to regain his or her abilities. It is important
that goals be attainable, since a patient who feels pressured and/or
repeatedly criticized by others will probably experience stress that may
lead to a worsening of symptoms. Like anyone else, people with
schizophrenia need to know when they are doing things right. A positive
approach may be helpful and perhaps more effective in the long run than
criticism. This advice applies to everyone who interacts with the person.
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The outlook for people with schizophrenia has
improved over the last 25 years. Although no totally effective therapy has
yet been devised, it is important to remember that many people with the
illness improve enough to lead independent, satisfying lives. As we learn
more about the causes and treatments of schizophrenia, we should be able
to help more patients achieve successful outcomes.
Studies that have followed people with
schizophrenia for long periods, from the first episode to old age, reveal
that a wide range of outcomes is possible. When large groups of patients
are studied, certain factors tend to be associated with a better outcome
– for example, a pre-illness history of normal social, school, and work
adjustment. However, the current state of knowledge, does not allow for a
sufficiently accurate prediction of long-term outcome.
Given the complexity of schizophrenia, the major
questions about this disorder – its cause or causes, prevention, and
treatment – must be addressed with research. The public should beware of
those offering "the cure" for (or "the cause" of)
schizophrenia. Such claims can provoke unrealistic expectations that, when
unfulfilled, lead to further disappointment. Although progress has been
made toward better understanding and treatment of schizophrenia, continued
investigation is urgently needed. As the lead Federal agency for research
on mental disorders, NIMH conducts and supports a broad spectrum of mental
illness research from molecular genetics to large-scale epidemiologic
studies of populations. It is thought that this wide-ranging research
effort, including basic studies on the brain, will continue to illuminate
processes and principles important for understanding the causes of
schizophrenia and for developing more effective treatments.