WHAT IS SCHIZOPHRENIA?
What are the symptoms?
The symptoms of schizophrenia are divided into three categories:positive symptoms, disorganized symptoms, and negative symptoms.
Positive or psychotic symptoms of Schizophrenia:
• Delusions, unusual thoughts, and suspiciousness. People
with schizophrenia may have ideas that are strange, false,
and out of touch with reality. They may believe that people
are reading their thoughts or plotting against them, that others
are secretly monitoring and threatening them, or that
they can control other people’s minds or be controlled by
them.
• Hallucinations. People with schizophrenia may hear voices
talking to them or about them, usually saying negative, critical,
or frightening things. Less commonly, the person may
see objects that don’t exist.
• Distorted perceptions. People with schizophrenia may have
a hard time making sense of everyday sights, sounds, smells,
tastes, and bodily sensations—so that ordinary things appear
frightening. They may be extra-sensitive to background
noises, lights, colors, and distractions.
Negative symptoms of Schizophrenia:
• Flat or blunted emotions. Schizophrenia can make it difficult
for people to experience feelings, know what they are
feeling, clearly express their emotions, or empathize with
other people’s feelings. It can be hard for people with such
symptoms to relate to others. This can lead to periods of intense
withdrawal and profound isolation.
• Lack of motivation or energy. People with schizophrenia usually
have trouble starting projects or finishing things they’ve
started. In extreme cases, they may have to be reminded to do
simple things like taking a bath or changing clothes.
• Lack of pleasure or interest in things. To people with
schizophrenia, the world seems flat, uninteresting, and cardboard.
It feels like it is not worth the effort to get out and do
things.
• Limited speech. People with schizophrenia often won’t say
much and may not speak unless spoken to.
Disorganized symptoms of Schizophrenia:
• Confused thinking and disorganized speech. People with
schizophrenia may have trouble thinking clearly and understanding
what other people say. It may be difficult for them
to carry on a conversation, plan ahead, and solve problems.
• Disorganized behavior. Schizophrenia can cause people to
do things that don’t make sense, repeat rhythmic gestures, or
make ritualistic movements. Sometimes the illness can cause
people to completely stop speaking or moving or to hold a
fixed position for long periods of time.
When does schizophrenia begin?
Schizophrenia can affect anyone at any age, but it usually
starts between adolescence and the age of 40. Children can also
be affected by schizophrenia, but this is rare.
The person who is having a first episode of schizophrenia may
have been ill for a long time before getting help. Usually he or
she comes to treatment because delusions or hallucinations have
triggered disturbing behavior. At this point, the person often
denies having a mental illness and does not want treatment. With
treatment, however, delusions and hallucinations are likely to get
much better. Most people make a good recovery from a first
episode of schizophrenia, although this can take several months.
What is the usual course of schizophrenia?
The severity of the course varies a lot and often depends on
whether the person keeps taking medicine. Patients can be divided
into three groups based on how severe their symptoms are
and how often they relapse.
The patient who has a mild course of illness and is
usually stable
• Takes medication as prescribed all the time
• Has had only one or two major relapses by age 45
• Has only a few mild symptoms
The patient who has a moderate course of illness and is often stable
• Takes medication as prescribed most of the time
• Has had several major relapses by age 45, plus periods of
increased symptoms during times of stress
• Has some persistent symptoms between relapses
The patient who has a severe and unstable course of illness
• Often doesn’t take medication as prescribed and may drop out
of treatment
• Relapses frequently and is stable only for short periods of
time between relapses
• Has a lot of bothersome symptoms
• Needs help with activities of daily living (e.g., finding a place
to live, managing money, cooking, laundry)
• Is likely to have other problems that make it harder to recover
(e.g., medical problems, substance abuse, or a mood disorder)
What are the stages of recovery?
• Acute episode: this is a period of very intense psychotic
symptoms. It may start suddenly or begin slowly over several
months.
• Stabilization after an acute episode: After the intense psychotic
symptoms are controlled by medication, there is usually
a period of troublesome, but much less severe, symptoms.
• Maintenance phase or between acute episodes: This is the
longer term recovery phase of the illness. The most intense
symptoms of the illness are controlled by medication, but
there may be some milder persistent symptoms. Many people
continue to improve during this phase, but at a slower pace.
Why is it important to diagnose and treat schizophrenia as early as possible?
Early diagnosis, proper treatment, and finding the right medications can help people in a number of important ways:
• Stabilize acute psychotic symptoms. The first priority is to
eliminate or reduce the positive (psychotic) symptoms, especially
when they are disruptive. Most people’s psychotic
symptoms can be stabilized within 6 weeks from the time they
start medication. Antipsychotic medications allow patients to
be discharged from the hospital much earlier.
• Reduce likelihood of relapse and rehospitalization. The more
relapses a person has, the harder it is to recover from them.
Proper treatment can prevent or delay relapse and break the
“revolving door” cycle.
• Ensure appropriate treatment. Sometimes a person is misdiagnosed
as having another disorder instead of schizophrenia.
This can be a serious problem because the person may end up
taking the wrong medications.
• Decrease alcohol/substance abuse. More than 50% of people
with schizophrenia have problems with alcohol or street drugs
at some point during their illness, and this makes matters
much worse. Prompt recognition and treatment of this “dual
diagnosis” problem is essential for recovery.
• Decrease risk of suicide. The overall lifetime rate of suicide
is over 10%. The risk is highest in the early years of the illness.
Fortunately, suicidal behavior is treatable, and the suicide
risk eventually decreases over time. Therefore, it is
very important to get professional help to avoid this tragic
outcome.
• Minimize problems in relationships and life disruption.
Early diagnosis and treatment decrease the risk that the illness
will get in the way of relationships and life goals.
• Reduce stress and burden on families. Schizophrenia places
a tremendous burden on families and loved ones. Programs
that involve families early in the treatment process reduce
relapse and decrease stress and disruption in the family.
• Begin rehabilitation. Early treatment allows the recovery
process to begin before long periods of disability have occurred.
Is schizophrenia inherited?
The answer is yes, but only to a degree. If no one in your
family has schizophrenia, the chances are only 1 in 100 that
you will have it. If one of your parents or a brother or a sister
has it, the chances go up, but only to about 10%. If both your
parents have schizophrenia, there is a 40% chance that you will
have it. If you have a family member with schizophrenia and
you have no signs of the illness by your 30s, it is extremely
unlikely that you will get this illness. If you have a parent or
brother or sister with schizophrenia, the chances of your children
getting schizophrenia are only slightly increased (only to
about 3%) and most genetic counselors do not consider this to
be a large enough difference to change one’s family planning.
Researchers have identified a number of genes that may be
linked to the disorder. This suggests that different kinds of
biochemical problems may lead to schizophrenia in different
people (just as there are different kinds of arthritis). However,
many other factors besides genetics are also involved. Research
is currently underway to identify these factors and learn
how they affect chances of developing the illness. We do know
that schizophrenia is not caused by bad parenting, trauma,
abuse, or personal weakness.
MEDICATION TREATMENT
The medications used to treat schizophrenia are called antipsychotics
because they help control the hallucinations, delusions,
and thinking problems associated with the illness.
Patients may need to try several different antipsychotic medications
before they find the medicine, or combination of medicines,
that works best for them. When the first antipsychotic
medication was introduced 50 years ago, this represented the
first effective treatment for schizophrenia. Three categories of
antipsychotics are now available, and the wide choice of
treatment options has greatly improved patients’ chances for
recovery.
Conventional antipsychotics
The antipsychotics in longest use are called conventional
antipsychotics. Although very effective, they often cause serious
or troublesome movement side effects.
Examples are:
of side effects, experts usually recommend using a
newer atypical antipsychotic rather than a conventional.
There are two exceptions. For those individuals who are
already doing well on a conventional antipsychotic without
troublesome side effects, the experts recommend continuing it.
The other exception is when the person has had trouble taking
pills regularly. Two of the conventional antipsychotics, Prolixin
and Haldol, can be given in long-acting shots (called
“depot formulations”) at 2- to 4-week intervals. With depot
formulations, medication is stored in the body and slowly
released. No such depot preparations are yet available for the
newer antipsychotics.
Newer atypical antipsychotics
The treatment of schizophrenia has been revolutionized in
recent years by the introduction of several newer atypical antipsychotics.
These medications are called atypical because they
work in a different way than the conventional antipsychotics and
are much less likely to cause the distressing movement side
effects that can be so troubling with the conventional antipsychotics.
The following newer atypical antipsychotics are currently
available:
• Risperdal (risperidone)
• Seroquel (quetiapine)
• Zyprexa (olanzapine)
Other atypical antipsychotics, such as Zeldox (ziprasidone), may
be available in the near future.
The experts recommend the newer atypical medications as the
treatment of choice for most patients with schizophrenia.
Clozaril (clozapine)
Clozaril, introduced in 1990, was the first atypical antipsychotic.
Clozaril can help 25%–50% of patients who have not
responded to conventional antipsychotics. Unfortunately, Clozaril
has a rare but potentially very serious side effect. In fewer
than 1% of those taking it, Clozaril can decrease the number of
white blood cells necessary to fight infection. This means that
patients receiving Clozaril must have their blood checked regularly.
The experts recommend that Clozaril be used only after at
least two other safer antipsychotics have not worked.
Selecting medication for a first episode
The experts recommend the newer atypical antipsychotics as
the treatment of choice for a patient having a first episode of
schizophrenia. This reflects their better side effect profile and
lower risk of tardive dyskinesia. Clozapine is not recommended
for a first episode because of its side effects.
How long does it take antipsychotics to work?
Usually the antipsychotic medications take a while to begin
working. Before giving up on a medicine and switching to another
one, the experts recommend trying it for about 6 weeks
(and perhaps twice as long for Clozaril).
Selecting medication for relapses
If a person has a relapse because of not taking the medication
as prescribed, it is important to find out why he or she stopped
taking it. Sometimes people stop taking medication because of
troubling side effects. If this happens, the doctor may lower the
dose, add a side effect medication, or switch to a medication
with fewer side effects (usually an atypical antipsychotic). If the
person was not taking the medication for other reasons, the
doctor may suggest switching to a long-acting injection given
every 2–4 weeks, which makes it simpler to stay on the medication.
Sometimes a person will relapse despite taking the medication
as prescribed. This is generally a good reason to switch to another
medication—usually one of the newer atypical antipsychotics
if the person was taking a conventional antipsychotic, or
a different newer atypical antipsychotic if the person had already
tried an atypical antipsychotic. Fortunately, even if someone has
not responded well to a number of other antipsychotics, clozapine
is available as a backup and may work when other things
have failed.
Medication during the recovery period
We now know that schizophrenia is a highly treatable disease.
Like diabetes, a cure has not yet been found, but the symptoms
can be controlled with medication in most people. Prospects for
the future are constantly brighter through the pioneering explorations
in brain research and the development of many new
medications. To achieve good results, however, you must stick
to your treatment and avoid substance abuse.
It is very important that patients stay in treatment even after
recovery. Four out of five patients who stop taking their medications
after a first episode of schizophrenia will have a relapse.
The experts recommend that first episode patients stay on an
antipsychotic medication for 12–24 months before even trying to
reduce the dose. Patients who have had more than one episode of
schizophrenia or have not recovered fully from a first episode
will need treatment for a longer time, maybe even indefinitely.
Remember—stopping medication is the most frequent cause of
relapse and a more severe and unstable course of illness.
Be sure to take your medicine as directed. Even if you have
felt better for a long time, you can still have a relapse if you go
off your medication.
What are the possible side effects of antipsychotics?
Because people with schizophrenia have to take their medications
for a very long time, it is important to avoid and manage
unpleasant side effects.
Perhaps the biggest problem with the conventional antipsychotics
is that they often cause muscle movements or rigidity
called extrapyramidal side effects (EPS). People may feel
slowed down and stiff. Or they may be so restless that they have
to walk around all the time and feel like they’re jumping out of
their skin. The medicine can also cause tremors, especially in the
hands and feet. Sometimes the doctor will give a medication
called an anticholinergic (usually benztropine [Cogentin]) along
with the antipsychotic to prevent or treat EPS. The atypical
antipsychotics are much less likely to cause EPS than the conventional
antipsychotics.
When people take antipsychotic medications for a long time,
they sometimes develop a side effect called tardive dyskinesia—
uncontrolled movements of the mouth, a protruding tongue, or
facial grimaces. Hands and feet may move in a slow rhythmical
pattern without the person wishing this to happen and sometimes
even without the person being aware of it. The chances of developing
this side effect can be reduced by using the lowest possible
effective dose of antipsychotic medication. If someone
taking a conventional antipsychotic develops tardive dyskinesia,
the experts recommend switching to an atypical antipsychotic.
Medications for schizophrenia can cause problems with sexual
functioning that may make patients stop taking them. The doctor
will usually treat these problems by lowering the dose of antipsychotic
to the smallest effective dose or switching to a newer
atypical antipsychotic.
Weight gain can be a problem with all the antipsychotics, but
it is more common with the atypical antipsychotics than the
conventional antipsychotics. Diet and exercise can help.
A rare side effect of antipsychotic medications is neuroleptic
malignant syndrome, which involves very severe stiffness and
tremor that can lead to fever and other severe complications.
Such symptoms require the doctor’s immediate attention.
Tell your doctor right away about any side effects you have
Different people have different side effects, and some people
may have no problems at all with side effects. Also, what is a
troublesome side effect for one person (for example, sedation in
someone who already feels lethargic because of the illness) may
be a helpful effect for someone else (sedation in someone who
has trouble sleeping).
It can also be very hard to tell if a problem is part of the illness
or is a side effect of the medication. For example, conventional
antipsychotics can make you feel slowed down and
tired—but so can the lack of energy that is a negative symptom
of schizophrenia.
If you develop any new problem while taking an antipsychotic,
tell your doctor right away so that he can decide if it is
a side effect of your medication. If side effects are a problem
for you, you and your doctor can try a number of things to
help:
• Waiting a while to see if the side effect goes away on its own
• Reducing the amount of medicine
• Adding another medication to treat the side effect
• Trying a different medicine (especially an atypical antipsychotic)
to see if there are fewer or less bothersome side effects
Remember: Changing medicine is a complicated decision. It is
dangerous to make changes in your medicine on your own!
Changes in medication should also be made slowly.
treatment of schizophrenia, it is not usually enough by itself.
People with schizophrenia also need services and support to
overcome the illness and to deal with the fear, isolation, and
stigma often associated with it. In the following sections, we
present the experts’ recommendations for the kinds of psychosocial
treatment, rehabilitation services, and living arrangements
that may be helpful at various stages of recovery. These
recommendations are intended to be guidelines, not rules. Each
patient is unique, and special circumstances may affect the
choice of which services are best for a specific patient at a
particular time during recovery. Also, some communities have
a lot of different services to choose from, while others unfortunately
have only a few. It is important for you to find out
what services are available to you in your community (and
when necessary to advocate for more).
Key components of psychosocial treatment
Patient and family education. Patient, family, and other key
people in the patient’s life need to learn as much as possible about
what schizophrenia is and how it is treated, and to develop the
knowledge and skills needed to avoid relapse and work toward
recovery. Patient and family education is an ongoing process that
is recommended throughout all phases of the illness.
Collaborative decision making. It is extremely important for
patient, family, and clinician to make decisions together about
treatments and goals to work toward. Joint decision making is
recommended at every stage of the illness. As patients recover,
they can take an increasingly active part in making decisions about
the management of their own illness.
Medication and symptom monitoring. Careful monitoring can
help ensure that patients take medication as prescribed and identify
early signs of relapse so that preventive steps can be taken. A
checklist of symptoms and side effects can be used to see how
well the medication is working, to check for signs of relapse, and
to figure out if efforts to decrease side effects are successful.
Medication can be monitored by helping the person fill a weekly
pill box or by providing supervision at medication times.
Assistance with obtaining medication. Paying for treatment is
often difficult. Health insurance coverage for psychiatric illnesses,
when available, may have high deductibles and copayments,
limited visits, or other restrictions that are not equal to the benefits
for other medical disorders. Public programs such as Medicaid and
Medicare may be available to finance treatment. The newer medications
that can be so helpful for most patients are unfortunately
more expensive than the older ones. The treatment team, patient,
and family should explore available ways to get access to the best
medication by working through public or private insurance,
copayment waivers, indigent drug programs, or drug company
compassionate need programs.
Assistance with obtaining services and resources. Patients often
need help obtaining services (such as psychiatric, medical, and
dental care) and help in applying for programs like disability
income and food stamps. Such assistance is especially important
for people having their first episode and for those who are more
severely ill.
Arrange for supervision of financial resources. Some patients
may need at least temporary help managing their finances—especially
those with a severe and unstable course of illness. If so, a
responsible person can be named as the patient’s “representative
payee.” Disability checks are then sent to the representative payee
who helps the patient pay bills, gives advice about spending, and
helps the patient avoid running out of money before the next check
comes.
Training and assistance with activities of daily living. Most
people who are recovering from schizophrenia want to become
more independent. Some people may need assistance learning
how to better manage everyday things like shopping, budgeting,
cooking, laundry, personal hygiene, and social/leisure
activities.
Supportive Therapy involves providing emotional support and
reassurance, reinforcing health-promoting behavior, and helping
the person accept and adjust to the illness and make the most of
his or her capabilities. Psychotherapy by itself is not effective in
treating schizophrenia. However, individual and group therapy
can provide important support, skill building, and friendship for
patients during the stabilization phase after an acute episode and
during the maintenance phase.
Peer support/self-help group. Almost all mutual support groups
are run by peers rather than professionals. Many of these groups
meet 1–4 times a month, depending on the needs and interest of
the members. Guest speakers are sometimes invited to add education
to the fellowship, caring, sharing, discussion, peer advice,
and mutual support that are vital parts of most consumer support
groups. Peer support/self-help groups can play a very important
role in the recovery process, especially when patients are stabilizing
after an acute episode and during long-term maintenance.
Types of services most often needed
Doctor and therapist appointments for medication management
and supportive therapy. It is very important to keep appointments
with your doctor and therapist during every phase of
the illness. These appointments are a necessary part of treatment
regardless of where you are in the recovery process—during an
acute episode, stabilizing after an acute episode, and during
long-term recovery and maintenance. It may be tempting to skip
appointments when your symptoms are under control, but continued
treatment during all phases of recovery is extremely
important in preventing relapse. Many people with schizophrenia
also need one or more of the services described below to
make the best recovery possible.
Assertive community treatment (ACT). Instead of patients going
to a mental health center, the ACT multidisciplinary team works
with them at home and in the community. ACT teams are staffed
to provide intensive services, so they can visit often—even every
day if needed. ACT teams help people with a lot of different
things like medication, money management, living arrangements,
problem solving, shopping, jobs, and school. ACT is a
long-term program that can continue to follow the person
through all phases of the illness. The experts strongly recommend
ACT programs, especially for patients who have a severe
and unstable course of illness.
Rehabilitation. Three types of rehabilitation programs may help
patients during the long-term recovery and maintenance phase of
the illness. Rehabilitation may be especially important for patients
who need to improve their job skills, want to work, have
worked in the past, and have few remaining symptoms.
• Psychosocial rehabilitation: a clubhouse program to help
people improve work skills with the goal of getting and
keeping a job. Fountain House and Thresholds are two wellknown
examples.
• Psychiatric rehabilitation: a program teaching skills that will
allow people to define and achieve personal goals regarding
work, education, socialization, and living arrangements.
• Vocational rehabilitation: a work assessment and training
program that is usually part of Vocational Rehabilitation
Services (VRS). This type of rehabilitation helps people prepare
for full-time competitive employment.
Intensive partial hospitalization. Patients in Partial Hospitalization
Programs (PHPs) typically attend structured groups for 4 to
6 hours a day, 3 to 5 days a week. These education, therapy, and
skill building groups are designed to help people avoid hospitalization
or get out of the hospital sooner, get symptoms under
control, and avoid a relapse. A PHP is usually recommended for
patients during acute episodes and while stabilizing after an
acute episode.
Aftercare day treatment. Day Treatment Programs (DTPs)
typically provide a place to go, a sense of belonging and friendship,
fun things to do, and a chance to learn and practice skills.
They also provide long-term support and an improved quality of
life. DTPs can help patients while they are stabilizing after an
acute episode and during long-term recovery and maintenance.
Case management. Case managers usually go out to see people
in their homes instead of making appointments at an office or
clinic. They can help people get the basic things they need such
as food, clothes, disability income, a place to live, and medical
treatment. They can also check to be sure patients are taking
their medication, help them manage money, take them grocery
shopping, and teach them skills so they can be more independent.
Having a case manager is helpful for many people with
schizophrenia.
Types of living arrangements
Treatment won’t work well if the person does not have a good
and stable place to live. A number of residential options have
been developed for patients with schizophrenia—unfortunately,
they are not all available in every community.
Brief respite/crisis home: an intensive residential program with
on-site nursing/clinical staff who provide 24-hour supervision,
structure, and treatment. This level of care can often help prevent
hospitalization for patients who are relapsing. Brief respite/
crisis homes can be a good choice for patients during acute
episodes and sometimes during the stabilization phase after an
acute episode.
Transitional group home: an intensive, structured program that
often includes in-house daily training in living skills and 24-hour
awake coverage by paraprofessionals. Treatment may be provided
in-house or the resident may attend a treatment or rehabilitation
program during the day. Transitional homes can help
patients while they are stabilizing after an acute episode and can
often serve as the next step after hospitalization or a brief respite/
crisis home. They can also be helpful during an acute relapse
if a brief respite/crisis home is not available.
Foster or boarding homes: supportive group living situation
owned and operated by lay people. Staff usually provide some
supervision and assistance during the day and a staff member
typically sleeps in the home at night. Foster homes and boarding
homes are recommended for patients during long-term recovery
and maintenance, especially if other options (living with family,
a supervised/supported apartment, or independent living) are not
available or do not fit patient/family needs and preferences.
Supervised or supported apartments: a building with several
one- or two-bedroom apartments, with needed support, assistance,
and supervision provided by a specially trained residential
manager who lives in one of the apartments or by periodic visits
from a mental health provider and/or family members. These
types of apartments are recommended for patients during longterm
recovery and maintenance.
Living with family: For some people, living with family may be
the best long-term arrangement. For others, this may be needed
only during acute episodes, especially if other types of residence
are not available or the patient and family prefer to live together.
Independent living: This type of living arrangement is strongly
recommended during long-term recovery and maintenance, but
may not be possible during acute episodes of the illness and for
patients with a more severe course of illness who may find it
hard to live independently.
OTHER TREATMENT ISSUES
Hospitalization
Patients who are acutely ill with schizophrenia may occasionally
require hospitalization to treat serious suicidal inclinations,
severe delusions, hallucinations, or disorganization and to prevent
injury to self or others. Hospitalizations usually last 1 to 2
weeks. However, longer hospitalization may be needed for first
episodes or if the person is slow to respond to treatment or has
other complications.
It is important for family members to be in touch with the
hospital staff so they can tell them what medications the person
has received in the past and what worked best. It is useful for the
family to be proactive in working with the staff to make living
and financial arrangements for the patient after discharge. Family
should ask the staff to give them information about the patient’s
illness and discuss ways to help the patient stick with
outpatient treatment.
After discharge
Patients are usually not fully recovered when they are discharged
from inpatient care. This can be a difficult time with
increased risks for relapse, substance abuse, and suicide. It is
important to be sure that a follow-up outpatient appointment
has been scheduled, ideally within a week after discharge, and
that the inpatient staff has provided the patient with enough
medication to last until that appointment. Ask the staff for an
around-the-clock phone number to call if there is a problem. It
is a good idea for someone to call the patient shortly before the
first appointment as a reminder. If the patient fails to show up,
everyone should work to make another appointment and to get
the person there for it. Good follow-up care is the best way to
avoid a severe course with repeated revolving-door hospitalizations.
Involuntary outpatient commitment
Involuntary outpatient commitment and “conditional release”
use a court order to require people to take medication
and stay in treatment in the community. While not a first line
treatment, resorting to legal pressure to require compliance
with treatment may sometimes be helpful for patients who
deny their illness and relapse frequently.
Postpsychotic depression
Depression is not uncommon during the maintenance
phase of treatment after the active psychotic symptoms have
resolved. It is important for patients and family members to
alert the treatment team if a patient who has been improving
develops depressive symptoms, since this can interfere with
the person’s recovery and increase the risk of suicide. The
doctor may suggest an antidepressant medication, which can
help relieve the depression. A psychiatric rehabilitation
program may benefit patients experiencing postpsychotic
depression who see little hope for the future. Family and
patient education can help everyone understand that
postpsychotic depression is just a part of the recovery process
and can be treated successfully. Peer self-help groups
may also provide valuable support for patients who have
postpsychotic depression.
Medical problems associated with schizophrenia
Patients with schizophrenia often get very inadequate care
for their medical illnesses. This is particularly unfortunate
because they are at increased risk for the complications of
smoking, obesity, hypertension, substance abuse, diabetes,
and cardiovascular problems. The experts therefore recommend
regular monitoring for medical illness and close collaboration
between the mental health clinicians and the
primary care doctor.
WHAT CAN I DO TO HELP MY DISORDER?
You and your family should learn as much as possible
about the disorder and its treatments. There are also a number
of other things you can do to help cope with the illness and
prevent relapses.
Avoid alcohol or illicit drugs
The use of these substances provides a short-term lift but
they have a devastating effect on the long-term course of the
illness. Programs to help control substance problems include
dual diagnosis treatment programs, group therapy, education,
or counseling. If you can’t stop using alcohol or substances,
you should still take your antipsychotic medication. Although
mixing the two is not a great idea, stopping the antipsychotic
medication is a much worse one.
Become familiar with early warning signs of a relapse
Each individual tends to have some “signature” signs that
warn of a coming episode. Some individuals may become
increasingly suspicious, worry that other people are talking
about them, have altered perceptions, become more irritable
or withdrawn, have trouble interacting with others or expressing
themselves clearly, or express bizarre ideas. Learn
to identify your own warning signals. When these signs
appear, speak to your doctor as soon as possible so that your
medications can be adjusted. Family members may also be
able to help you identify early warning signs of relapse.
Don’t quit your treatment
It is normal to have occasional doubts and discomfort with
treatment. Be sure to discuss your concerns and discomforts with
your doctor, therapist, and family. If you feel a medication is not
working or you are having trouble with side effects, tell your
doctor—don’t stop or adjust your medication on your own.
Symptoms that come back after stopping medication are sometimes
much harder to treat. Likewise, if you are not satisfied
with the program you are in, talk to your therapist about what
other services are available. With all the new treatment options,
you, your doctor, and your therapist can work together to find
the best and most comfortable program for you.
WHAT CAN FAMILIES AND FRIENDS DO TO HELP?
Once you find out that someone close to you has schizophrenia,
expect that it will have a profound impact on your life and
that you will need help in dealing with it. Because so many
people are afraid and uninformed about the disease, many families
try to hide it from friends and deal with it on their own. If
someone in your family has schizophrenia, you need understanding,
love, and support from others. No one causes schizophrenia,
just as no one causes diabetes, cancer, or heart disease.
You are not to blame—and you are not alone.
Help the person find appropriate treatment and the means to pay for it
The most important thing you can do is to help the person find
effective treatment and encourage him or her to stick with it. To
find a good doctor or clinic, contact your local mental health
center, ask your own physician for a referral, or contact the
psychiatry department of a university medical school or the
American Psychiatric Association. You can contact the National
Alliance for the Mentally Ill (NAMI) to consult with others who
have a family member with schizophrenia or who have the
disorder themselves.
It is also important to help the person find a way to pay for the
medications he or she needs. Social workers or case managers
may be able to help you through the difficult red tape, but you
may also have to contact your local Social Security or social
services office directly to find out what benefits are available in
your area and how to apply for them. Finding the way through
the maze of application processes is difficult even for those who
are not ill. A person with schizophrenia will certainly need your
help to obtain adequate benefits.
Learn about the disorder
If you are a family member or friend of someone with schizophrenia,
learn all you can about the illness and its treatment.
Don’t be shy about asking the doctor and therapist questions.
Read books and go to National Alliance for the Mentally Ill
(NAMI) meetings.
Encourage the person to stick with treatment
The most important factors in keeping patients out of the
hospital are for them to take their medications regularly and
avoid alcohol and street drugs. Work with your loved one to help
him or her remember to take the medicine. Long-acting injectable
forms of medication can help patients who find it hard to
take a pill every day.
Handling symptoms
Try your best to understand what your loved one is going
through and how the illness causes upsetting or difficult behavior.
When people are hallucinating or delusional, it’s
important to realize that the voices they hear and the images
they see are very real to them and difficult to ignore. You
should not argue with them, make fun of or criticize them, or
act alarmed.
After the acute episode has ended, it is a good time for the
patient, the family, and the healthcare provider to review what
has been learned about the person’s illness in a low-key and
non-blaming way. Everyone can work together to develop
plans for minimizing the problems and distress that future
episodes may cause. For example, the family members can
ask the person with schizophrenia to agree that, if they notice
warning signs of a relapse, it will be OK for them to contact
the doctor so that the medication can be adjusted to try to
prevent the relapse.
Learn the warning signs of suicide
Take any threats the person makes very seriously. Seek help
from the patient’s doctor and other family members and
friends. Call 911 or a hospital emergency room if the situation
becomes desperate. Encourage the person to realize that suicidal
thinking is a symptom of the illness and will pass in time
as the treatment takes effect. Always stress that the person’s
life is important to you and to others and that his or her suicide
would be a tremendous loss and burden to you, not a
relief.
Learn to recognize warning signs of relapse
Learn the warning signs of a relapse. Stay calm, acknowledge
how the person is feeling, indicate that it is a sign of a
return of the illness, suggest the importance of getting medical
help, and do what you can to help him or her feel safe and
more in control.
Don’t expect too fast a recovery
When people are recovering from an acute psychotic episode,
they need to approach life at their own pace. Don’t push
too hard. At the same time, don’t be too overprotective. Do
things with them, rather than for them, so they can regain their
sense of self-confidence. Help the person prioritize recovery
goals.
People with schizophrenia may have many health problems.
They often smoke a lot and may have poor nutrition and excessive
weight gain. Although you can encourage the patient
to try to control these problems, it is important not to put a lot
of pressure on him or her. Focus first on the most important
issues: medication adherence and avoiding alcohol and drug
use. Your top priority should be to help the patient avoid
relapse and maintain stability.
Handling crises
In some cases, behavior caused by schizophrenia can be
bizarre and threatening. If you are confronted with such behavior,
do your best to stay calm and nonjudgmental, be concise
and direct in whatever you say, clarify the reality of the
situation, and be clear about the limits of acceptable behavior.
Don’t feel that you have to handle the situation alone. Getmedical help. Your safety and the safety of the ill person
should always come first. When necessary, call the police or
911.
Coping with schizophrenia
Many people find that joining a family support group is a
turning point for them in their struggle to understand the illness
and get help for their relative and themselves. More than
1,000 such groups affiliated with the National Alliance for the
Mentally Ill (NAMI) are now active in local communities in all
50 states. Members of these groups share information and
strategies for everything from coping with symptoms to finding
financial, medical, and other resources.
Families who deal most successfully with a relative who has
schizophrenia are those who come to accept the illness and its
difficult consequences, develop realistic expectations for the ill
person and for themselves, accept all the help and support they
can get, and also keep a philosophical perspective and a sense
of humor. It takes times to develop these attitudes, but the
understanding support of others can be a great help.
Schizophrenia poses undeniable hardships for everyone in
the family. To deal with it in the best possible way, it’s particularly
important for you to take care of yourself, do things
you enjoy, and not allow the illness to consume your life.
Experts on schizophrenia believe that recently introduced new
treatments are already a big improvement and that new research
discoveries will bring a better understanding of schizophrenia
that will result in even more effective treatments. In
the meantime, help the patient live the best life he or she can
today, and do the same for yourself.
SUPPORT GROUPS
NAMI
The National Alliance for the Mentally Ill (NAMI) is the
national umbrella organization for more than 1,140 local support
and advocacy groups for families and individuals affected by
serious mental illnesses. To learn more about NAMI or locate
your state’s NAMI affiliate or office, contact:
NAMI
200 N. Glebe Rd., Suite 1015
Arlington, VA 22203-3754
NAMI Helpline at 800-950-NAMI (800-950-6264).
Several other organizations can also help you locate support
groups and information:
National Depressive and Manic-Depressive Association
730 N. Franklin St., Suite 501
Chicago IL, 60610-3526
800-82-NDMDA (800-826-3632)
National Mental Health Association (NMHA)
National Mental Health Information Center
1021 Prince Street
Alexandria, VA 22314-2971
800-969-6642
The National Mental Health Consumer Self Help Clearinghouse
1211 Chestnut St., 11th Floor
Philadelphia, PA 19107
800-688-4226
FOR MORE INFORMATION
The following materials provide more information on schizophrenia.
Most are available through NAMI. To order or to obtain
a complete publications list, write NAMI or call 703-524-7600.
Books
Adamec C. How to Live with a Mentally Ill Person: A Handbook
of Day-to-Day Strategies. Wiley & Sons, 1996.
Backlar P. The Family Face of Schizophrenia. J P Tarcher, 1994.
Bouricius JK. Psychoactive Drugs and Their Effects on Mentally
Ill Persons. NAMI, 1996.
Carter R, Golant SK. Helping Someone with Mental Illness.
Times Books, 1998.
Gorman JM. The New Psychiatry: The Essential Guide to Stateof-
the-Art Therapy, Medication, and Emotional Health. St.
Martins, 1996.
Hall L, Mark T. The Efficacy of Schizophrenia Treatment.
NAMI, 1995.
Hatfield A, Lefley HP. Surviving Mental Illness: Stress, Coping,
and Adaptation. Guilford, 1993.
Lefley HP. Family Caregiving in Mental Illness. Sage, 1996.
Mueser KT, Gingerich S. Coping with Schizophrenia: A Guide
for Families. Harbinger Press, 1994.
Torrey EF. Surviving Schizophrenia: For Families, Consumers,
and Providers (Third Edition). Harper & Row, 1995.
Weiden PJ. TeamCare Solutions. Eli Lilly, 1997 (to order, call
888-997-7392).
Weiden PJ, Diamond RJ, Scheifler PL, Ross R. Breakthroughs
in Antipsychotic Medications: A Guide for Consumers,
Families, and Clinicians. Norton, 1999.
Woolis R. When Someone You Love Has Mental Illness: A
Handbook for Family, Friends, and Caregivers.
Tarcher/Perigee, 1992.
Wyden P. Conquering Schizophrenia. Knopf, 1998.
What are the symptoms?
The symptoms of schizophrenia are divided into three categories:positive symptoms, disorganized symptoms, and negative symptoms.
Positive or psychotic symptoms of Schizophrenia:
• Delusions, unusual thoughts, and suspiciousness. People
with schizophrenia may have ideas that are strange, false,
and out of touch with reality. They may believe that people
are reading their thoughts or plotting against them, that others
are secretly monitoring and threatening them, or that
they can control other people’s minds or be controlled by
them.
• Hallucinations. People with schizophrenia may hear voices
talking to them or about them, usually saying negative, critical,
or frightening things. Less commonly, the person may
see objects that don’t exist.
• Distorted perceptions. People with schizophrenia may have
a hard time making sense of everyday sights, sounds, smells,
tastes, and bodily sensations—so that ordinary things appear
frightening. They may be extra-sensitive to background
noises, lights, colors, and distractions.
Negative symptoms of Schizophrenia:
• Flat or blunted emotions. Schizophrenia can make it difficult
for people to experience feelings, know what they are
feeling, clearly express their emotions, or empathize with
other people’s feelings. It can be hard for people with such
symptoms to relate to others. This can lead to periods of intense
withdrawal and profound isolation.
• Lack of motivation or energy. People with schizophrenia usually
have trouble starting projects or finishing things they’ve
started. In extreme cases, they may have to be reminded to do
simple things like taking a bath or changing clothes.
• Lack of pleasure or interest in things. To people with
schizophrenia, the world seems flat, uninteresting, and cardboard.
It feels like it is not worth the effort to get out and do
things.
• Limited speech. People with schizophrenia often won’t say
much and may not speak unless spoken to.
Disorganized symptoms of Schizophrenia:
• Confused thinking and disorganized speech. People with
schizophrenia may have trouble thinking clearly and understanding
what other people say. It may be difficult for them
to carry on a conversation, plan ahead, and solve problems.
• Disorganized behavior. Schizophrenia can cause people to
do things that don’t make sense, repeat rhythmic gestures, or
make ritualistic movements. Sometimes the illness can cause
people to completely stop speaking or moving or to hold a
fixed position for long periods of time.
When does schizophrenia begin?
Schizophrenia can affect anyone at any age, but it usually
starts between adolescence and the age of 40. Children can also
be affected by schizophrenia, but this is rare.
The person who is having a first episode of schizophrenia may
have been ill for a long time before getting help. Usually he or
she comes to treatment because delusions or hallucinations have
triggered disturbing behavior. At this point, the person often
denies having a mental illness and does not want treatment. With
treatment, however, delusions and hallucinations are likely to get
much better. Most people make a good recovery from a first
episode of schizophrenia, although this can take several months.
What is the usual course of schizophrenia?
The severity of the course varies a lot and often depends on
whether the person keeps taking medicine. Patients can be divided
into three groups based on how severe their symptoms are
and how often they relapse.
The patient who has a mild course of illness and is
usually stable
• Takes medication as prescribed all the time
• Has had only one or two major relapses by age 45
• Has only a few mild symptoms
The patient who has a moderate course of illness and is often stable
• Takes medication as prescribed most of the time
• Has had several major relapses by age 45, plus periods of
increased symptoms during times of stress
• Has some persistent symptoms between relapses
The patient who has a severe and unstable course of illness
• Often doesn’t take medication as prescribed and may drop out
of treatment
• Relapses frequently and is stable only for short periods of
time between relapses
• Has a lot of bothersome symptoms
• Needs help with activities of daily living (e.g., finding a place
to live, managing money, cooking, laundry)
• Is likely to have other problems that make it harder to recover
(e.g., medical problems, substance abuse, or a mood disorder)
What are the stages of recovery?
• Acute episode: this is a period of very intense psychotic
symptoms. It may start suddenly or begin slowly over several
months.
• Stabilization after an acute episode: After the intense psychotic
symptoms are controlled by medication, there is usually
a period of troublesome, but much less severe, symptoms.
• Maintenance phase or between acute episodes: This is the
longer term recovery phase of the illness. The most intense
symptoms of the illness are controlled by medication, but
there may be some milder persistent symptoms. Many people
continue to improve during this phase, but at a slower pace.
Why is it important to diagnose and treat schizophrenia as early as possible?
Early diagnosis, proper treatment, and finding the right medications can help people in a number of important ways:
• Stabilize acute psychotic symptoms. The first priority is to
eliminate or reduce the positive (psychotic) symptoms, especially
when they are disruptive. Most people’s psychotic
symptoms can be stabilized within 6 weeks from the time they
start medication. Antipsychotic medications allow patients to
be discharged from the hospital much earlier.
• Reduce likelihood of relapse and rehospitalization. The more
relapses a person has, the harder it is to recover from them.
Proper treatment can prevent or delay relapse and break the
“revolving door” cycle.
• Ensure appropriate treatment. Sometimes a person is misdiagnosed
as having another disorder instead of schizophrenia.
This can be a serious problem because the person may end up
taking the wrong medications.
• Decrease alcohol/substance abuse. More than 50% of people
with schizophrenia have problems with alcohol or street drugs
at some point during their illness, and this makes matters
much worse. Prompt recognition and treatment of this “dual
diagnosis” problem is essential for recovery.
• Decrease risk of suicide. The overall lifetime rate of suicide
is over 10%. The risk is highest in the early years of the illness.
Fortunately, suicidal behavior is treatable, and the suicide
risk eventually decreases over time. Therefore, it is
very important to get professional help to avoid this tragic
outcome.
• Minimize problems in relationships and life disruption.
Early diagnosis and treatment decrease the risk that the illness
will get in the way of relationships and life goals.
• Reduce stress and burden on families. Schizophrenia places
a tremendous burden on families and loved ones. Programs
that involve families early in the treatment process reduce
relapse and decrease stress and disruption in the family.
• Begin rehabilitation. Early treatment allows the recovery
process to begin before long periods of disability have occurred.
Is schizophrenia inherited?
The answer is yes, but only to a degree. If no one in your
family has schizophrenia, the chances are only 1 in 100 that
you will have it. If one of your parents or a brother or a sister
has it, the chances go up, but only to about 10%. If both your
parents have schizophrenia, there is a 40% chance that you will
have it. If you have a family member with schizophrenia and
you have no signs of the illness by your 30s, it is extremely
unlikely that you will get this illness. If you have a parent or
brother or sister with schizophrenia, the chances of your children
getting schizophrenia are only slightly increased (only to
about 3%) and most genetic counselors do not consider this to
be a large enough difference to change one’s family planning.
Researchers have identified a number of genes that may be
linked to the disorder. This suggests that different kinds of
biochemical problems may lead to schizophrenia in different
people (just as there are different kinds of arthritis). However,
many other factors besides genetics are also involved. Research
is currently underway to identify these factors and learn
how they affect chances of developing the illness. We do know
that schizophrenia is not caused by bad parenting, trauma,
abuse, or personal weakness.
MEDICATION TREATMENT
The medications used to treat schizophrenia are called antipsychotics
because they help control the hallucinations, delusions,
and thinking problems associated with the illness.
Patients may need to try several different antipsychotic medications
before they find the medicine, or combination of medicines,
that works best for them. When the first antipsychotic
medication was introduced 50 years ago, this represented the
first effective treatment for schizophrenia. Three categories of
antipsychotics are now available, and the wide choice of
treatment options has greatly improved patients’ chances for
recovery.
Conventional antipsychotics
The antipsychotics in longest use are called conventional
antipsychotics. Although very effective, they often cause serious
or troublesome movement side effects.
Examples are:
- Haldol (haloperidol)
- Stelazine (trifluoperazine)
- Mellaril (thioridazine)
- Thorazine (chlorpromazine)
- Navane (thiothixene)
- Trilafon (perphenazine)
- Prolixin (fluphenazine)
of side effects, experts usually recommend using a
newer atypical antipsychotic rather than a conventional.
There are two exceptions. For those individuals who are
already doing well on a conventional antipsychotic without
troublesome side effects, the experts recommend continuing it.
The other exception is when the person has had trouble taking
pills regularly. Two of the conventional antipsychotics, Prolixin
and Haldol, can be given in long-acting shots (called
“depot formulations”) at 2- to 4-week intervals. With depot
formulations, medication is stored in the body and slowly
released. No such depot preparations are yet available for the
newer antipsychotics.
Newer atypical antipsychotics
The treatment of schizophrenia has been revolutionized in
recent years by the introduction of several newer atypical antipsychotics.
These medications are called atypical because they
work in a different way than the conventional antipsychotics and
are much less likely to cause the distressing movement side
effects that can be so troubling with the conventional antipsychotics.
The following newer atypical antipsychotics are currently
available:
• Risperdal (risperidone)
• Seroquel (quetiapine)
• Zyprexa (olanzapine)
Other atypical antipsychotics, such as Zeldox (ziprasidone), may
be available in the near future.
The experts recommend the newer atypical medications as the
treatment of choice for most patients with schizophrenia.
Clozaril (clozapine)
Clozaril, introduced in 1990, was the first atypical antipsychotic.
Clozaril can help 25%–50% of patients who have not
responded to conventional antipsychotics. Unfortunately, Clozaril
has a rare but potentially very serious side effect. In fewer
than 1% of those taking it, Clozaril can decrease the number of
white blood cells necessary to fight infection. This means that
patients receiving Clozaril must have their blood checked regularly.
The experts recommend that Clozaril be used only after at
least two other safer antipsychotics have not worked.
Selecting medication for a first episode
The experts recommend the newer atypical antipsychotics as
the treatment of choice for a patient having a first episode of
schizophrenia. This reflects their better side effect profile and
lower risk of tardive dyskinesia. Clozapine is not recommended
for a first episode because of its side effects.
How long does it take antipsychotics to work?
Usually the antipsychotic medications take a while to begin
working. Before giving up on a medicine and switching to another
one, the experts recommend trying it for about 6 weeks
(and perhaps twice as long for Clozaril).
Selecting medication for relapses
If a person has a relapse because of not taking the medication
as prescribed, it is important to find out why he or she stopped
taking it. Sometimes people stop taking medication because of
troubling side effects. If this happens, the doctor may lower the
dose, add a side effect medication, or switch to a medication
with fewer side effects (usually an atypical antipsychotic). If the
person was not taking the medication for other reasons, the
doctor may suggest switching to a long-acting injection given
every 2–4 weeks, which makes it simpler to stay on the medication.
Sometimes a person will relapse despite taking the medication
as prescribed. This is generally a good reason to switch to another
medication—usually one of the newer atypical antipsychotics
if the person was taking a conventional antipsychotic, or
a different newer atypical antipsychotic if the person had already
tried an atypical antipsychotic. Fortunately, even if someone has
not responded well to a number of other antipsychotics, clozapine
is available as a backup and may work when other things
have failed.
Medication during the recovery period
We now know that schizophrenia is a highly treatable disease.
Like diabetes, a cure has not yet been found, but the symptoms
can be controlled with medication in most people. Prospects for
the future are constantly brighter through the pioneering explorations
in brain research and the development of many new
medications. To achieve good results, however, you must stick
to your treatment and avoid substance abuse.
It is very important that patients stay in treatment even after
recovery. Four out of five patients who stop taking their medications
after a first episode of schizophrenia will have a relapse.
The experts recommend that first episode patients stay on an
antipsychotic medication for 12–24 months before even trying to
reduce the dose. Patients who have had more than one episode of
schizophrenia or have not recovered fully from a first episode
will need treatment for a longer time, maybe even indefinitely.
Remember—stopping medication is the most frequent cause of
relapse and a more severe and unstable course of illness.
Be sure to take your medicine as directed. Even if you have
felt better for a long time, you can still have a relapse if you go
off your medication.
What are the possible side effects of antipsychotics?
Because people with schizophrenia have to take their medications
for a very long time, it is important to avoid and manage
unpleasant side effects.
Perhaps the biggest problem with the conventional antipsychotics
is that they often cause muscle movements or rigidity
called extrapyramidal side effects (EPS). People may feel
slowed down and stiff. Or they may be so restless that they have
to walk around all the time and feel like they’re jumping out of
their skin. The medicine can also cause tremors, especially in the
hands and feet. Sometimes the doctor will give a medication
called an anticholinergic (usually benztropine [Cogentin]) along
with the antipsychotic to prevent or treat EPS. The atypical
antipsychotics are much less likely to cause EPS than the conventional
antipsychotics.
When people take antipsychotic medications for a long time,
they sometimes develop a side effect called tardive dyskinesia—
uncontrolled movements of the mouth, a protruding tongue, or
facial grimaces. Hands and feet may move in a slow rhythmical
pattern without the person wishing this to happen and sometimes
even without the person being aware of it. The chances of developing
this side effect can be reduced by using the lowest possible
effective dose of antipsychotic medication. If someone
taking a conventional antipsychotic develops tardive dyskinesia,
the experts recommend switching to an atypical antipsychotic.
Medications for schizophrenia can cause problems with sexual
functioning that may make patients stop taking them. The doctor
will usually treat these problems by lowering the dose of antipsychotic
to the smallest effective dose or switching to a newer
atypical antipsychotic.
Weight gain can be a problem with all the antipsychotics, but
it is more common with the atypical antipsychotics than the
conventional antipsychotics. Diet and exercise can help.
A rare side effect of antipsychotic medications is neuroleptic
malignant syndrome, which involves very severe stiffness and
tremor that can lead to fever and other severe complications.
Such symptoms require the doctor’s immediate attention.
Tell your doctor right away about any side effects you have
Different people have different side effects, and some people
may have no problems at all with side effects. Also, what is a
troublesome side effect for one person (for example, sedation in
someone who already feels lethargic because of the illness) may
be a helpful effect for someone else (sedation in someone who
has trouble sleeping).
It can also be very hard to tell if a problem is part of the illness
or is a side effect of the medication. For example, conventional
antipsychotics can make you feel slowed down and
tired—but so can the lack of energy that is a negative symptom
of schizophrenia.
If you develop any new problem while taking an antipsychotic,
tell your doctor right away so that he can decide if it is
a side effect of your medication. If side effects are a problem
for you, you and your doctor can try a number of things to
help:
• Waiting a while to see if the side effect goes away on its own
• Reducing the amount of medicine
• Adding another medication to treat the side effect
• Trying a different medicine (especially an atypical antipsychotic)
to see if there are fewer or less bothersome side effects
Remember: Changing medicine is a complicated decision. It is
dangerous to make changes in your medicine on your own!
Changes in medication should also be made slowly.
PSYCHOSOCIAL TREATMENT
AND REHABILITATION
Although medication is almost always necessary in theAND REHABILITATION
treatment of schizophrenia, it is not usually enough by itself.
People with schizophrenia also need services and support to
overcome the illness and to deal with the fear, isolation, and
stigma often associated with it. In the following sections, we
present the experts’ recommendations for the kinds of psychosocial
treatment, rehabilitation services, and living arrangements
that may be helpful at various stages of recovery. These
recommendations are intended to be guidelines, not rules. Each
patient is unique, and special circumstances may affect the
choice of which services are best for a specific patient at a
particular time during recovery. Also, some communities have
a lot of different services to choose from, while others unfortunately
have only a few. It is important for you to find out
what services are available to you in your community (and
when necessary to advocate for more).
Key components of psychosocial treatment
Patient and family education. Patient, family, and other key
people in the patient’s life need to learn as much as possible about
what schizophrenia is and how it is treated, and to develop the
knowledge and skills needed to avoid relapse and work toward
recovery. Patient and family education is an ongoing process that
is recommended throughout all phases of the illness.
Collaborative decision making. It is extremely important for
patient, family, and clinician to make decisions together about
treatments and goals to work toward. Joint decision making is
recommended at every stage of the illness. As patients recover,
they can take an increasingly active part in making decisions about
the management of their own illness.
Medication and symptom monitoring. Careful monitoring can
help ensure that patients take medication as prescribed and identify
early signs of relapse so that preventive steps can be taken. A
checklist of symptoms and side effects can be used to see how
well the medication is working, to check for signs of relapse, and
to figure out if efforts to decrease side effects are successful.
Medication can be monitored by helping the person fill a weekly
pill box or by providing supervision at medication times.
Assistance with obtaining medication. Paying for treatment is
often difficult. Health insurance coverage for psychiatric illnesses,
when available, may have high deductibles and copayments,
limited visits, or other restrictions that are not equal to the benefits
for other medical disorders. Public programs such as Medicaid and
Medicare may be available to finance treatment. The newer medications
that can be so helpful for most patients are unfortunately
more expensive than the older ones. The treatment team, patient,
and family should explore available ways to get access to the best
medication by working through public or private insurance,
copayment waivers, indigent drug programs, or drug company
compassionate need programs.
Assistance with obtaining services and resources. Patients often
need help obtaining services (such as psychiatric, medical, and
dental care) and help in applying for programs like disability
income and food stamps. Such assistance is especially important
for people having their first episode and for those who are more
severely ill.
Arrange for supervision of financial resources. Some patients
may need at least temporary help managing their finances—especially
those with a severe and unstable course of illness. If so, a
responsible person can be named as the patient’s “representative
payee.” Disability checks are then sent to the representative payee
who helps the patient pay bills, gives advice about spending, and
helps the patient avoid running out of money before the next check
comes.
Training and assistance with activities of daily living. Most
people who are recovering from schizophrenia want to become
more independent. Some people may need assistance learning
how to better manage everyday things like shopping, budgeting,
cooking, laundry, personal hygiene, and social/leisure
activities.
Supportive Therapy involves providing emotional support and
reassurance, reinforcing health-promoting behavior, and helping
the person accept and adjust to the illness and make the most of
his or her capabilities. Psychotherapy by itself is not effective in
treating schizophrenia. However, individual and group therapy
can provide important support, skill building, and friendship for
patients during the stabilization phase after an acute episode and
during the maintenance phase.
Peer support/self-help group. Almost all mutual support groups
are run by peers rather than professionals. Many of these groups
meet 1–4 times a month, depending on the needs and interest of
the members. Guest speakers are sometimes invited to add education
to the fellowship, caring, sharing, discussion, peer advice,
and mutual support that are vital parts of most consumer support
groups. Peer support/self-help groups can play a very important
role in the recovery process, especially when patients are stabilizing
after an acute episode and during long-term maintenance.
Types of services most often needed
Doctor and therapist appointments for medication management
and supportive therapy. It is very important to keep appointments
with your doctor and therapist during every phase of
the illness. These appointments are a necessary part of treatment
regardless of where you are in the recovery process—during an
acute episode, stabilizing after an acute episode, and during
long-term recovery and maintenance. It may be tempting to skip
appointments when your symptoms are under control, but continued
treatment during all phases of recovery is extremely
important in preventing relapse. Many people with schizophrenia
also need one or more of the services described below to
make the best recovery possible.
Assertive community treatment (ACT). Instead of patients going
to a mental health center, the ACT multidisciplinary team works
with them at home and in the community. ACT teams are staffed
to provide intensive services, so they can visit often—even every
day if needed. ACT teams help people with a lot of different
things like medication, money management, living arrangements,
problem solving, shopping, jobs, and school. ACT is a
long-term program that can continue to follow the person
through all phases of the illness. The experts strongly recommend
ACT programs, especially for patients who have a severe
and unstable course of illness.
Rehabilitation. Three types of rehabilitation programs may help
patients during the long-term recovery and maintenance phase of
the illness. Rehabilitation may be especially important for patients
who need to improve their job skills, want to work, have
worked in the past, and have few remaining symptoms.
• Psychosocial rehabilitation: a clubhouse program to help
people improve work skills with the goal of getting and
keeping a job. Fountain House and Thresholds are two wellknown
examples.
• Psychiatric rehabilitation: a program teaching skills that will
allow people to define and achieve personal goals regarding
work, education, socialization, and living arrangements.
• Vocational rehabilitation: a work assessment and training
program that is usually part of Vocational Rehabilitation
Services (VRS). This type of rehabilitation helps people prepare
for full-time competitive employment.
Intensive partial hospitalization. Patients in Partial Hospitalization
Programs (PHPs) typically attend structured groups for 4 to
6 hours a day, 3 to 5 days a week. These education, therapy, and
skill building groups are designed to help people avoid hospitalization
or get out of the hospital sooner, get symptoms under
control, and avoid a relapse. A PHP is usually recommended for
patients during acute episodes and while stabilizing after an
acute episode.
Aftercare day treatment. Day Treatment Programs (DTPs)
typically provide a place to go, a sense of belonging and friendship,
fun things to do, and a chance to learn and practice skills.
They also provide long-term support and an improved quality of
life. DTPs can help patients while they are stabilizing after an
acute episode and during long-term recovery and maintenance.
Case management. Case managers usually go out to see people
in their homes instead of making appointments at an office or
clinic. They can help people get the basic things they need such
as food, clothes, disability income, a place to live, and medical
treatment. They can also check to be sure patients are taking
their medication, help them manage money, take them grocery
shopping, and teach them skills so they can be more independent.
Having a case manager is helpful for many people with
schizophrenia.
Types of living arrangements
Treatment won’t work well if the person does not have a good
and stable place to live. A number of residential options have
been developed for patients with schizophrenia—unfortunately,
they are not all available in every community.
Brief respite/crisis home: an intensive residential program with
on-site nursing/clinical staff who provide 24-hour supervision,
structure, and treatment. This level of care can often help prevent
hospitalization for patients who are relapsing. Brief respite/
crisis homes can be a good choice for patients during acute
episodes and sometimes during the stabilization phase after an
acute episode.
Transitional group home: an intensive, structured program that
often includes in-house daily training in living skills and 24-hour
awake coverage by paraprofessionals. Treatment may be provided
in-house or the resident may attend a treatment or rehabilitation
program during the day. Transitional homes can help
patients while they are stabilizing after an acute episode and can
often serve as the next step after hospitalization or a brief respite/
crisis home. They can also be helpful during an acute relapse
if a brief respite/crisis home is not available.
Foster or boarding homes: supportive group living situation
owned and operated by lay people. Staff usually provide some
supervision and assistance during the day and a staff member
typically sleeps in the home at night. Foster homes and boarding
homes are recommended for patients during long-term recovery
and maintenance, especially if other options (living with family,
a supervised/supported apartment, or independent living) are not
available or do not fit patient/family needs and preferences.
Supervised or supported apartments: a building with several
one- or two-bedroom apartments, with needed support, assistance,
and supervision provided by a specially trained residential
manager who lives in one of the apartments or by periodic visits
from a mental health provider and/or family members. These
types of apartments are recommended for patients during longterm
recovery and maintenance.
Living with family: For some people, living with family may be
the best long-term arrangement. For others, this may be needed
only during acute episodes, especially if other types of residence
are not available or the patient and family prefer to live together.
Independent living: This type of living arrangement is strongly
recommended during long-term recovery and maintenance, but
may not be possible during acute episodes of the illness and for
patients with a more severe course of illness who may find it
hard to live independently.
OTHER TREATMENT ISSUES
Hospitalization
Patients who are acutely ill with schizophrenia may occasionally
require hospitalization to treat serious suicidal inclinations,
severe delusions, hallucinations, or disorganization and to prevent
injury to self or others. Hospitalizations usually last 1 to 2
weeks. However, longer hospitalization may be needed for first
episodes or if the person is slow to respond to treatment or has
other complications.
It is important for family members to be in touch with the
hospital staff so they can tell them what medications the person
has received in the past and what worked best. It is useful for the
family to be proactive in working with the staff to make living
and financial arrangements for the patient after discharge. Family
should ask the staff to give them information about the patient’s
illness and discuss ways to help the patient stick with
outpatient treatment.
After discharge
Patients are usually not fully recovered when they are discharged
from inpatient care. This can be a difficult time with
increased risks for relapse, substance abuse, and suicide. It is
important to be sure that a follow-up outpatient appointment
has been scheduled, ideally within a week after discharge, and
that the inpatient staff has provided the patient with enough
medication to last until that appointment. Ask the staff for an
around-the-clock phone number to call if there is a problem. It
is a good idea for someone to call the patient shortly before the
first appointment as a reminder. If the patient fails to show up,
everyone should work to make another appointment and to get
the person there for it. Good follow-up care is the best way to
avoid a severe course with repeated revolving-door hospitalizations.
Involuntary outpatient commitment
Involuntary outpatient commitment and “conditional release”
use a court order to require people to take medication
and stay in treatment in the community. While not a first line
treatment, resorting to legal pressure to require compliance
with treatment may sometimes be helpful for patients who
deny their illness and relapse frequently.
Postpsychotic depression
Depression is not uncommon during the maintenance
phase of treatment after the active psychotic symptoms have
resolved. It is important for patients and family members to
alert the treatment team if a patient who has been improving
develops depressive symptoms, since this can interfere with
the person’s recovery and increase the risk of suicide. The
doctor may suggest an antidepressant medication, which can
help relieve the depression. A psychiatric rehabilitation
program may benefit patients experiencing postpsychotic
depression who see little hope for the future. Family and
patient education can help everyone understand that
postpsychotic depression is just a part of the recovery process
and can be treated successfully. Peer self-help groups
may also provide valuable support for patients who have
postpsychotic depression.
Medical problems associated with schizophrenia
Patients with schizophrenia often get very inadequate care
for their medical illnesses. This is particularly unfortunate
because they are at increased risk for the complications of
smoking, obesity, hypertension, substance abuse, diabetes,
and cardiovascular problems. The experts therefore recommend
regular monitoring for medical illness and close collaboration
between the mental health clinicians and the
primary care doctor.
WHAT CAN I DO TO HELP MY DISORDER?
You and your family should learn as much as possible
about the disorder and its treatments. There are also a number
of other things you can do to help cope with the illness and
prevent relapses.
Avoid alcohol or illicit drugs
The use of these substances provides a short-term lift but
they have a devastating effect on the long-term course of the
illness. Programs to help control substance problems include
dual diagnosis treatment programs, group therapy, education,
or counseling. If you can’t stop using alcohol or substances,
you should still take your antipsychotic medication. Although
mixing the two is not a great idea, stopping the antipsychotic
medication is a much worse one.
Become familiar with early warning signs of a relapse
Each individual tends to have some “signature” signs that
warn of a coming episode. Some individuals may become
increasingly suspicious, worry that other people are talking
about them, have altered perceptions, become more irritable
or withdrawn, have trouble interacting with others or expressing
themselves clearly, or express bizarre ideas. Learn
to identify your own warning signals. When these signs
appear, speak to your doctor as soon as possible so that your
medications can be adjusted. Family members may also be
able to help you identify early warning signs of relapse.
Don’t quit your treatment
It is normal to have occasional doubts and discomfort with
treatment. Be sure to discuss your concerns and discomforts with
your doctor, therapist, and family. If you feel a medication is not
working or you are having trouble with side effects, tell your
doctor—don’t stop or adjust your medication on your own.
Symptoms that come back after stopping medication are sometimes
much harder to treat. Likewise, if you are not satisfied
with the program you are in, talk to your therapist about what
other services are available. With all the new treatment options,
you, your doctor, and your therapist can work together to find
the best and most comfortable program for you.
WHAT CAN FAMILIES AND FRIENDS DO TO HELP?
Once you find out that someone close to you has schizophrenia,
expect that it will have a profound impact on your life and
that you will need help in dealing with it. Because so many
people are afraid and uninformed about the disease, many families
try to hide it from friends and deal with it on their own. If
someone in your family has schizophrenia, you need understanding,
love, and support from others. No one causes schizophrenia,
just as no one causes diabetes, cancer, or heart disease.
You are not to blame—and you are not alone.
Help the person find appropriate treatment and the means to pay for it
The most important thing you can do is to help the person find
effective treatment and encourage him or her to stick with it. To
find a good doctor or clinic, contact your local mental health
center, ask your own physician for a referral, or contact the
psychiatry department of a university medical school or the
American Psychiatric Association. You can contact the National
Alliance for the Mentally Ill (NAMI) to consult with others who
have a family member with schizophrenia or who have the
disorder themselves.
It is also important to help the person find a way to pay for the
medications he or she needs. Social workers or case managers
may be able to help you through the difficult red tape, but you
may also have to contact your local Social Security or social
services office directly to find out what benefits are available in
your area and how to apply for them. Finding the way through
the maze of application processes is difficult even for those who
are not ill. A person with schizophrenia will certainly need your
help to obtain adequate benefits.
Learn about the disorder
If you are a family member or friend of someone with schizophrenia,
learn all you can about the illness and its treatment.
Don’t be shy about asking the doctor and therapist questions.
Read books and go to National Alliance for the Mentally Ill
(NAMI) meetings.
Encourage the person to stick with treatment
The most important factors in keeping patients out of the
hospital are for them to take their medications regularly and
avoid alcohol and street drugs. Work with your loved one to help
him or her remember to take the medicine. Long-acting injectable
forms of medication can help patients who find it hard to
take a pill every day.
Handling symptoms
Try your best to understand what your loved one is going
through and how the illness causes upsetting or difficult behavior.
When people are hallucinating or delusional, it’s
important to realize that the voices they hear and the images
they see are very real to them and difficult to ignore. You
should not argue with them, make fun of or criticize them, or
act alarmed.
After the acute episode has ended, it is a good time for the
patient, the family, and the healthcare provider to review what
has been learned about the person’s illness in a low-key and
non-blaming way. Everyone can work together to develop
plans for minimizing the problems and distress that future
episodes may cause. For example, the family members can
ask the person with schizophrenia to agree that, if they notice
warning signs of a relapse, it will be OK for them to contact
the doctor so that the medication can be adjusted to try to
prevent the relapse.
Learn the warning signs of suicide
Take any threats the person makes very seriously. Seek help
from the patient’s doctor and other family members and
friends. Call 911 or a hospital emergency room if the situation
becomes desperate. Encourage the person to realize that suicidal
thinking is a symptom of the illness and will pass in time
as the treatment takes effect. Always stress that the person’s
life is important to you and to others and that his or her suicide
would be a tremendous loss and burden to you, not a
relief.
Learn to recognize warning signs of relapse
Learn the warning signs of a relapse. Stay calm, acknowledge
how the person is feeling, indicate that it is a sign of a
return of the illness, suggest the importance of getting medical
help, and do what you can to help him or her feel safe and
more in control.
Don’t expect too fast a recovery
When people are recovering from an acute psychotic episode,
they need to approach life at their own pace. Don’t push
too hard. At the same time, don’t be too overprotective. Do
things with them, rather than for them, so they can regain their
sense of self-confidence. Help the person prioritize recovery
goals.
People with schizophrenia may have many health problems.
They often smoke a lot and may have poor nutrition and excessive
weight gain. Although you can encourage the patient
to try to control these problems, it is important not to put a lot
of pressure on him or her. Focus first on the most important
issues: medication adherence and avoiding alcohol and drug
use. Your top priority should be to help the patient avoid
relapse and maintain stability.
Handling crises
In some cases, behavior caused by schizophrenia can be
bizarre and threatening. If you are confronted with such behavior,
do your best to stay calm and nonjudgmental, be concise
and direct in whatever you say, clarify the reality of the
situation, and be clear about the limits of acceptable behavior.
Don’t feel that you have to handle the situation alone. Getmedical help. Your safety and the safety of the ill person
should always come first. When necessary, call the police or
911.
Coping with schizophrenia
Many people find that joining a family support group is a
turning point for them in their struggle to understand the illness
and get help for their relative and themselves. More than
1,000 such groups affiliated with the National Alliance for the
Mentally Ill (NAMI) are now active in local communities in all
50 states. Members of these groups share information and
strategies for everything from coping with symptoms to finding
financial, medical, and other resources.
Families who deal most successfully with a relative who has
schizophrenia are those who come to accept the illness and its
difficult consequences, develop realistic expectations for the ill
person and for themselves, accept all the help and support they
can get, and also keep a philosophical perspective and a sense
of humor. It takes times to develop these attitudes, but the
understanding support of others can be a great help.
Schizophrenia poses undeniable hardships for everyone in
the family. To deal with it in the best possible way, it’s particularly
important for you to take care of yourself, do things
you enjoy, and not allow the illness to consume your life.
Experts on schizophrenia believe that recently introduced new
treatments are already a big improvement and that new research
discoveries will bring a better understanding of schizophrenia
that will result in even more effective treatments. In
the meantime, help the patient live the best life he or she can
today, and do the same for yourself.
SUPPORT GROUPS
NAMI
The National Alliance for the Mentally Ill (NAMI) is the
national umbrella organization for more than 1,140 local support
and advocacy groups for families and individuals affected by
serious mental illnesses. To learn more about NAMI or locate
your state’s NAMI affiliate or office, contact:
NAMI
200 N. Glebe Rd., Suite 1015
Arlington, VA 22203-3754
NAMI Helpline at 800-950-NAMI (800-950-6264).
Several other organizations can also help you locate support
groups and information:
National Depressive and Manic-Depressive Association
730 N. Franklin St., Suite 501
Chicago IL, 60610-3526
800-82-NDMDA (800-826-3632)
National Mental Health Association (NMHA)
National Mental Health Information Center
1021 Prince Street
Alexandria, VA 22314-2971
800-969-6642
The National Mental Health Consumer Self Help Clearinghouse
1211 Chestnut St., 11th Floor
Philadelphia, PA 19107
800-688-4226
FOR MORE INFORMATION
The following materials provide more information on schizophrenia.
Most are available through NAMI. To order or to obtain
a complete publications list, write NAMI or call 703-524-7600.
Books
Adamec C. How to Live with a Mentally Ill Person: A Handbook
of Day-to-Day Strategies. Wiley & Sons, 1996.
Backlar P. The Family Face of Schizophrenia. J P Tarcher, 1994.
Bouricius JK. Psychoactive Drugs and Their Effects on Mentally
Ill Persons. NAMI, 1996.
Carter R, Golant SK. Helping Someone with Mental Illness.
Times Books, 1998.
Gorman JM. The New Psychiatry: The Essential Guide to Stateof-
the-Art Therapy, Medication, and Emotional Health. St.
Martins, 1996.
Hall L, Mark T. The Efficacy of Schizophrenia Treatment.
NAMI, 1995.
Hatfield A, Lefley HP. Surviving Mental Illness: Stress, Coping,
and Adaptation. Guilford, 1993.
Lefley HP. Family Caregiving in Mental Illness. Sage, 1996.
Mueser KT, Gingerich S. Coping with Schizophrenia: A Guide
for Families. Harbinger Press, 1994.
Torrey EF. Surviving Schizophrenia: For Families, Consumers,
and Providers (Third Edition). Harper & Row, 1995.
Weiden PJ. TeamCare Solutions. Eli Lilly, 1997 (to order, call
888-997-7392).
Weiden PJ, Diamond RJ, Scheifler PL, Ross R. Breakthroughs
in Antipsychotic Medications: A Guide for Consumers,
Families, and Clinicians. Norton, 1999.
Woolis R. When Someone You Love Has Mental Illness: A
Handbook for Family, Friends, and Caregivers.
Tarcher/Perigee, 1992.
Wyden P. Conquering Schizophrenia. Knopf, 1998.
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