Expert Consensus Treatment Guidelines for Schizophrenia:

A Guide for Patients and Families

I f you or someone you care about has been diagnosed with

schizophrenia, you may feel like you are the only person
facing this illness. But you are not alone—schizophrenia affects
Negative symptoms.
• Flat or blunted emotions. Schizophrenia can make it diffi-
cult for people to experience feelings, know what they are
almost 3 million Americans. Although widely misunderstood feeling, clearly express their emotions, or empathize with
and unfairly stigmatized, schizophrenia is actually a highly other people’s feelings. It can be hard for people with such
treatable brain disease. The treatment for schizophrenia is in symptoms to relate to others. This can lead to periods of in-
many ways similar to that for other medical conditions such as tense withdrawal and profound isolation.
diabetes or epilepsy. The good news is that new discoveries are • Lack of motivation or energy. People with schizophrenia usu-
greatly improving the chances of recovery and making it possi- ally have trouble starting projects or finishing things they’ve
ble for people with schizophrenia to lead much more independ- started. In extreme cases, they may have to be reminded to do
ent and productive lives. simple things like taking a bath or changing clothes.
This guide is designed to answer the most frequently asked • Lack of pleasure or interest in things. To people with
questions about schizophrenia and how it is treated. Many of the schizophrenia, the world seems flat, uninteresting, and card-
recommendations are based on a recent survey of over 100 board. It feels like it is not worth the effort to get out and do
experts on schizophrenia who were asked about the best ways to things.
treat this illness. • Limited speech. People with schizophrenia often won’t say
much and may not speak unless spoken to.
WHAT IS SCHIZOPHRENIA?
Disorganized symptoms
What are the symptoms? • Confused thinking and disorganized speech. People with
The symptoms of schizophrenia are divided into three catego- schizophrenia may have trouble thinking clearly and under-
ries: positive symptoms, disorganized symptoms, and negative standing what other people say. It may be difficult for them
symptoms. to carry on a conversation, plan ahead, and solve problems.
• Disorganized behavior. Schizophrenia can cause people to
Positive or psychotic symptoms do things that don’t make sense, repeat rhythmic gestures, or
• Delusions, unusual thoughts, and suspiciousness. People make ritualistic movements. Sometimes the illness can cause
with schizophrenia may have ideas that are strange, false, people to completely stop speaking or moving or to hold a
and out of touch with reality. They may believe that people fixed position for long periods of time.
are reading their thoughts or plotting against them, that oth-
ers are secretly monitoring and threatening them, or that When does schizophrenia begin?
they can control other people’s minds or be controlled by Schizophrenia can affect anyone at any age, but it usually
them. starts between adolescence and the age of 40. Children can also
• Hallucinations. People with schizophrenia may hear voices be affected by schizophrenia, but this is rare.
talking to them or about them, usually saying negative, criti- The person who is having a first episode of schizophrenia may
cal, or frightening things. Less commonly, the person may have been ill for a long time before getting help. Usually he or
see objects that don’t exist. she comes to treatment because delusions or hallucinations have
• Distorted perceptions. People with schizophrenia may have triggered disturbing behavior. At this point, the person often
a hard time making sense of everyday sights, sounds, smells, denies having a mental illness and does not want treatment. With
tastes, and bodily sensations—so that ordinary things appear treatment, however, delusions and hallucinations are likely to get
frightening. They may be extra-sensitive to background much better. Most people make a good recovery from a first
noises, lights, colors, and distractions. episode of schizophrenia, although this can take several months.

What is the usual course of schizophrenia?

This Guide was prepared by Peter J. Weiden, M.D., Patricia L. Scheifler,
The severity of the course varies a lot and often depends on
M.S.W., Joseph P. McEvoy, M.D., Allen Frances, M.D., and Ruth Ross,
whether the person keeps taking medicine. Patients can be di-
M.A. The guide includes recommendations contained in the 1999 Expert
vided into three groups based on how severe their symptoms are
Consensus Treatment Guidelines for Schizophrenia. The Editors grate-
and how often they relapse.
fully acknowledge Laurie Flynn and the National Alliance for the Men-
tally Ill for their generous help and permission to adapt their written
The patient who has a mild course of illness and is
materials. Eli Lilly, Janssen Pharmaceutica, Novartis Pharmaceuticals,
usually stable
Ortho-McNeil Pharmaceutical, Pfizer Inc, and Zeneca Pharmaceuticals
• Takes medication as prescribed all the time
provided unrestricted educational grants in support of this project.
• Has had only one or two major relapses by age 45
Reprinted from J Clin Psychiatry 1999:60 (suppl 11). • Has only a few mild symptoms

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Expert Consensus Guideline Series

The patient who has a moderate course of illness and is • Minimize problems in relationships and life disruption.
often stable Early diagnosis and treatment decrease the risk that the ill-
• Takes medication as prescribed most of the time ness will get in the way of relationships and life goals.
• Has had several major relapses by age 45, plus periods of • Reduce stress and burden on families. Schizophrenia places
increased symptoms during times of stress a tremendous burden on families and loved ones. Programs
• Has some persistent symptoms between relapses that involve families early in the treatment process reduce
relapse and decrease stress and disruption in the family.
The patient who has a severe and unstable course of illness • Begin rehabilitation. Early treatment allows the recovery
• Often doesn’t take medication as prescribed and may drop out process to begin before long periods of disability have oc-
of treatment curred.
• Relapses frequently and is stable only for short periods of
time between relapses Is schizophrenia inherited?
• Has a lot of bothersome symptoms The answer is yes, but only to a degree. If no one in your
• Needs help with activities of daily living (e.g., finding a place family has schizophrenia, the chances are only 1 in 100 that
to live, managing money, cooking, laundry) you will have it. If one of your parents or a brother or a sister
• Is likely to have other problems that make it harder to recover has it, the chances go up, but only to about 10%. If both your
(e.g., medical problems, substance abuse, or a mood disorder) parents have schizophrenia, there is a 40% chance that you will
have it. If you have a family member with schizophrenia and
What are the stages of recovery? you have no signs of the illness by your 30s, it is extremely
• Acute episode: this is a period of very intense psychotic unlikely that you will get this illness. If you have a parent or
symptoms. It may start suddenly or begin slowly over several brother or sister with schizophrenia, the chances of your chil-
months. dren getting schizophrenia are only slightly increased (only to
• Stabilization after an acute episode: After the intense psy- about 3%) and most genetic counselors do not consider this to
chotic symptoms are controlled by medication, there is usu- be a large enough difference to change one’s family planning.
ally a period of troublesome, but much less severe, symptoms. Researchers have identified a number of genes that may be
• Maintenance phase or between acute episodes: This is the linked to the disorder. This suggests that different kinds of
longer term recovery phase of the illness. The most intense biochemical problems may lead to schizophrenia in different
symptoms of the illness are controlled by medication, but people (just as there are different kinds of arthritis). However,
there may be some milder persistent symptoms. Many people many other factors besides genetics are also involved. Re-
continue to improve during this phase, but at a slower pace. search is currently underway to identify these factors and learn
how they affect chances of developing the illness. We do know
Why is it important to diagnose and treat schizophrenia as that schizophrenia is not caused by bad parenting, trauma,
early as possible? abuse, or personal weakness.
Early diagnosis, proper treatment, and finding the right medi-
cations can help people in a number of important ways: MEDICATION TREATMENT
• Stabilize acute psychotic symptoms. The first priority is to
eliminate or reduce the positive (psychotic) symptoms, espe- The medications used to treat schizophrenia are called anti-
cially when they are disruptive. Most people’s psychotic psychotics because they help control the hallucinations, delu-
symptoms can be stabilized within 6 weeks from the time they sions, and thinking problems associated with the illness.
start medication. Antipsychotic medications allow patients to Patients may need to try several different antipsychotic medi-
be discharged from the hospital much earlier. cations before they find the medicine, or combination of medi-
• Reduce likelihood of relapse and rehospitalization. The more cines, that works best for them. When the first antipsychotic
relapses a person has, the harder it is to recover from them. medication was introduced 50 years ago, this represented the
Proper treatment can prevent or delay relapse and break the first effective treatment for schizophrenia. Three categories of
“revolving door” cycle. antipsychotics are now available, and the wide choice of
• Ensure appropriate treatment. Sometimes a person is misdi- treatment options has greatly improved patients’ chances for
agnosed as having another disorder instead of schizophrenia. recovery.
This can be a serious problem because the person may end up
taking the wrong medications. Conventional antipsychotics
• Decrease alcohol/substance abuse. More than 50% of people The antipsychotics in longest use are called conventional
with schizophrenia have problems with alcohol or street drugs antipsychotics. Although very effective, they often cause seri-
at some point during their illness, and this makes matters ous or troublesome movement side effects. Examples are:
much worse. Prompt recognition and treatment of this “dual
Haldol (haloperidol) Stelazine (trifluoperazine)
diagnosis” problem is essential for recovery.
Mellaril (thioridazine) Thorazine (chlorpromazine)
• Decrease risk of suicide. The overall lifetime rate of suicide
Navane (thiothixene) Trilafon (perphenazine)
is over 10%. The risk is highest in the early years of the ill-
Prolixin (fluphenazine)
ness. Fortunately, suicidal behavior is treatable, and the sui-
cide risk eventually decreases over time. Therefore, it is Conventional antipsychotics are becoming obsolete. Be-
very important to get professional help to avoid this tragic cause of side effects, experts usually recommend using a
outcome. newer atypical antipsychotic rather than a conventional.

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 Treatment of Schizophrenia 1999

There are two exceptions. For those individuals who are doctor may suggest switching to a long-acting injection given
already doing well on a conventional antipsychotic without every 2–4 weeks, which makes it simpler to stay on the medica-
troublesome side effects, the experts recommend continuing it. tion.
The other exception is when the person has had trouble taking Sometimes a person will relapse despite taking the medication
pills regularly. Two of the conventional antipsychotics, Pro- as prescribed. This is generally a good reason to switch to an-
lixin and Haldol, can be given in long-acting shots (called other medication—usually one of the newer atypical antipsy-
“depot formulations”) at 2- to 4-week intervals. With depot chotics if the person was taking a conventional antipsychotic, or
formulations, medication is stored in the body and slowly a different newer atypical antipsychotic if the person had already
released. No such depot preparations are yet available for the tried an atypical antipsychotic. Fortunately, even if someone has
newer antipsychotics. not responded well to a number of other antipsychotics, cloza-
pine is available as a backup and may work when other things
Newer atypical antipsychotics have failed.
The treatment of schizophrenia has been revolutionized in
recent years by the introduction of several newer atypical anti- Medication during the recovery period
psychotics. These medications are called atypical because they We now know that schizophrenia is a highly treatable disease.
work in a different way than the conventional antipsychotics and Like diabetes, a cure has not yet been found, but the symptoms
are much less likely to cause the distressing movement side can be controlled with medication in most people. Prospects for
effects that can be so troubling with the conventional antipsy- the future are constantly brighter through the pioneering explo-
chotics. The following newer atypical antipsychotics are cur- rations in brain research and the development of many new
rently available: medications. To achieve good results, however, you must stick
• Risperdal (risperidone) to your treatment and avoid substance abuse.
• Seroquel (quetiapine) It is very important that patients stay in treatment even after
• Zyprexa (olanzapine) recovery. Four out of five patients who stop taking their medi-
Other atypical antipsychotics, such as Zeldox (ziprasidone), may cations after a first episode of schizophrenia will have a relapse.
be available in the near future. The experts recommend that first episode patients stay on an
The experts recommend the newer atypical medications as the antipsychotic medication for 12–24 months before even trying to
treatment of choice for most patients with schizophrenia. reduce the dose. Patients who have had more than one episode of
schizophrenia or have not recovered fully from a first episode
Clozaril (clozapine) will need treatment for a longer time, maybe even indefinitely.
Clozaril, introduced in 1990, was the first atypical antipsy- Remember—stopping medication is the most frequent cause of
chotic. Clozaril can help 25%–50% of patients who have not relapse and a more severe and unstable course of illness.
responded to conventional antipsychotics. Unfortunately, Clo- Be sure to take your medicine as directed. Even if you have
zaril has a rare but potentially very serious side effect. In fewer felt better for a long time, you can still have a relapse if you go
than 1% of those taking it, Clozaril can decrease the number of off your medication.
white blood cells necessary to fight infection. This means that
patients receiving Clozaril must have their blood checked regu- What are the possible side effects of antipsychotics?
larly. The experts recommend that Clozaril be used only after at Because people with schizophrenia have to take their medica-
least two other safer antipsychotics have not worked. tions for a very long time, it is important to avoid and manage
unpleasant side effects.
Selecting medication for a first episode Perhaps the biggest problem with the conventional antipsy-
The experts recommend the newer atypical antipsychotics as chotics is that they often cause muscle movements or rigidity
the treatment of choice for a patient having a first episode of called extrapyramidal side effects (EPS). People may feel
schizophrenia. This reflects their better side effect profile and slowed down and stiff. Or they may be so restless that they have
lower risk of tardive dyskinesia. Clozapine is not recommended to walk around all the time and feel like they’re jumping out of
for a first episode because of its side effects. their skin. The medicine can also cause tremors, especially in the
hands and feet. Sometimes the doctor will give a medication
How long does it take antipsychotics to work? called an anticholinergic (usually benztropine [Cogentin]) along
Usually the antipsychotic medications take a while to begin with the antipsychotic to prevent or treat EPS. The atypical
working. Before giving up on a medicine and switching to an- antipsychotics are much less likely to cause EPS than the con-
other one, the experts recommend trying it for about 6 weeks ventional antipsychotics.
(and perhaps twice as long for Clozaril). When people take antipsychotic medications for a long time,
they sometimes develop a side effect called tardive dyskinesia—
Selecting medication for relapses uncontrolled movements of the mouth, a protruding tongue, or
If a person has a relapse because of not taking the medication facial grimaces. Hands and feet may move in a slow rhythmical
as prescribed, it is important to find out why he or she stopped pattern without the person wishing this to happen and sometimes
taking it. Sometimes people stop taking medication because of even without the person being aware of it. The chances of devel-
troubling side effects. If this happens, the doctor may lower the oping this side effect can be reduced by using the lowest possi-
dose, add a side effect medication, or switch to a medication ble effective dose of antipsychotic medication. If someone
with fewer side effects (usually an atypical antipsychotic). If the taking a conventional antipsychotic develops tardive dyskinesia,
person was not taking the medication for other reasons, the the experts recommend switching to an atypical antipsychotic.

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Medications for schizophrenia can cause problems with sexual Key components of psychosocial treatment
functioning that may make patients stop taking them. The doctor
will usually treat these problems by lowering the dose of anti- Patient and family education. Patient, family, and other key
psychotic to the smallest effective dose or switching to a newer people in the patient’s life need to learn as much as possible about
atypical antipsychotic. what schizophrenia is and how it is treated, and to develop the
Weight gain can be a problem with all the antipsychotics, but knowledge and skills needed to avoid relapse and work toward
it is more common with the atypical antipsychotics than the recovery. Patient and family education is an ongoing process that
conventional antipsychotics. Diet and exercise can help. is recommended throughout all phases of the illness.
A rare side effect of antipsychotic medications is neuroleptic
malignant syndrome, which involves very severe stiffness and Collaborative decision making. It is extremely important for
tremor that can lead to fever and other severe complications. patient, family, and clinician to make decisions together about
Such symptoms require the doctor’s immediate attention. treatments and goals to work toward. Joint decision making is
recommended at every stage of the illness. As patients recover,
Tell your doctor right away about any side effects you have they can take an increasingly active part in making decisions about
Different people have different side effects, and some people the management of their own illness.
may have no problems at all with side effects. Also, what is a
troublesome side effect for one person (for example, sedation in Medication and symptom monitoring. Careful monitoring can
someone who already feels lethargic because of the illness) may help ensure that patients take medication as prescribed and iden-
be a helpful effect for someone else (sedation in someone who tify early signs of relapse so that preventive steps can be taken. A
has trouble sleeping). checklist of symptoms and side effects can be used to see how
It can also be very hard to tell if a problem is part of the ill- well the medication is working, to check for signs of relapse, and
ness or is a side effect of the medication. For example, conven- to figure out if efforts to decrease side effects are successful.
tional antipsychotics can make you feel slowed down and Medication can be monitored by helping the person fill a weekly
tired—but so can the lack of energy that is a negative symptom pill box or by providing supervision at medication times.
of schizophrenia.
If you develop any new problem while taking an antipsy- Assistance with obtaining medication. Paying for treatment is
chotic, tell your doctor right away so that he can decide if it is often difficult. Health insurance coverage for psychiatric illnesses,
a side effect of your medication. If side effects are a problem when available, may have high deductibles and copayments,
for you, you and your doctor can try a number of things to limited visits, or other restrictions that are not equal to the benefits
help: for other medical disorders. Public programs such as Medicaid and
• Waiting a while to see if the side effect goes away on its own Medicare may be available to finance treatment. The newer medi-
• Reducing the amount of medicine cations that can be so helpful for most patients are unfortunately
• Adding another medication to treat the side effect more expensive than the older ones. The treatment team, patient,
• Trying a different medicine (especially an atypical antipsy- and family should explore available ways to get access to the best
chotic) to see if there are fewer or less bothersome side effects medication by working through public or private insurance,
copayment waivers, indigent drug programs, or drug company
Remember: Changing medicine is a complicated decision. It is compassionate need programs.
dangerous to make changes in your medicine on your own!
Changes in medication should also be made slowly. 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
PSYCHOSOCIAL TREATMENT income and food stamps. Such assistance is especially important
AND REHABILITATION for people having their first episode and for those who are more
severely ill.
Although medication is almost always necessary in the
treatment of schizophrenia, it is not usually enough by itself. Arrange for supervision of financial resources. Some patients
People with schizophrenia also need services and support to may need at least temporary help managing their finances—espe-
overcome the illness and to deal with the fear, isolation, and cially those with a severe and unstable course of illness. If so, a
stigma often associated with it. In the following sections, we responsible person can be named as the patient’s “representative
present the experts’ recommendations for the kinds of psycho- payee.” Disability checks are then sent to the representative payee
social treatment, rehabilitation services, and living arrange- who helps the patient pay bills, gives advice about spending, and
ments that may be helpful at various stages of recovery. These helps the patient avoid running out of money before the next check
recommendations are intended to be guidelines, not rules. Each comes.
patient is unique, and special circumstances may affect the
choice of which services are best for a specific patient at a Training and assistance with activities of daily living. Most
particular time during recovery. Also, some communities have people who are recovering from schizophrenia want to become
a lot of different services to choose from, while others unfor- more independent. Some people may need assistance learning
tunately have only a few. It is important for you to find out how to better manage everyday things like shopping, budget-
what services are available to you in your community (and ing, cooking, laundry, personal hygiene, and social/leisure
when necessary to advocate for more). activities.

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 Treatment of Schizophrenia 1999

Supportive Therapy involves providing emotional support and Services (VRS). This type of rehabilitation helps people pre-
reassurance, reinforcing health-promoting behavior, and helping pare for full-time competitive employment.
the person accept and adjust to the illness and make the most of
his or her capabilities. Psychotherapy by itself is not effective in Intensive partial hospitalization. Patients in Partial Hospitaliza-
treating schizophrenia. However, individual and group therapy tion Programs (PHPs) typically attend structured groups for 4 to
can provide important support, skill building, and friendship for 6 hours a day, 3 to 5 days a week. These education, therapy, and
patients during the stabilization phase after an acute episode and skill building groups are designed to help people avoid hospi-
during the maintenance phase. talization or get out of the hospital sooner, get symptoms under
control, and avoid a relapse. A PHP is usually recommended for
Peer support/self-help group. Almost all mutual support groups patients during acute episodes and while stabilizing after an
are run by peers rather than professionals. Many of these groups acute episode.
meet 1–4 times a month, depending on the needs and interest of
the members. Guest speakers are sometimes invited to add edu- Aftercare day treatment. Day Treatment Programs (DTPs)
cation to the fellowship, caring, sharing, discussion, peer advice, typically provide a place to go, a sense of belonging and friend-
and mutual support that are vital parts of most consumer support ship, fun things to do, and a chance to learn and practice skills.
groups. Peer support/self-help groups can play a very important They also provide long-term support and an improved quality of
role in the recovery process, especially when patients are stabi- life. DTPs can help patients while they are stabilizing after an
lizing after an acute episode and during long-term maintenance. acute episode and during long-term recovery and maintenance.

Types of services most often needed Case management. Case managers usually go out to see people
in their homes instead of making appointments at an office or
Doctor and therapist appointments for medication manage- clinic. They can help people get the basic things they need such
ment and supportive therapy. It is very important to keep ap- as food, clothes, disability income, a place to live, and medical
pointments with your doctor and therapist during every phase of treatment. They can also check to be sure patients are taking
the illness. These appointments are a necessary part of treatment their medication, help them manage money, take them grocery
regardless of where you are in the recovery process—during an shopping, and teach them skills so they can be more independ-
acute episode, stabilizing after an acute episode, and during ent. Having a case manager is helpful for many people with
long-term recovery and maintenance. It may be tempting to skip schizophrenia.
appointments when your symptoms are under control, but con-
tinued treatment during all phases of recovery is extremely Types of living arrangements
important in preventing relapse. Many people with schizophre-
nia also need one or more of the services described below to Treatment won’t work well if the person does not have a good
make the best recovery possible. and stable place to live. A number of residential options have
been developed for patients with schizophrenia—unfortunately,
Assertive community treatment (ACT). Instead of patients going they are not all available in every community.
to a mental health center, the ACT multidisciplinary team works
with them at home and in the community. ACT teams are staffed Brief respite/crisis home: an intensive residential program with
to provide intensive services, so they can visit often—even every on-site nursing/clinical staff who provide 24-hour supervision,
day if needed. ACT teams help people with a lot of different structure, and treatment. This level of care can often help pre-
things like medication, money management, living arrange- vent hospitalization for patients who are relapsing. Brief res-
ments, problem solving, shopping, jobs, and school. ACT is a pite/crisis homes can be a good choice for patients during acute
long-term program that can continue to follow the person episodes and sometimes during the stabilization phase after an
through all phases of the illness. The experts strongly recom- acute episode.
mend ACT programs, especially for patients who have a severe
and unstable course of illness. Transitional group home: an intensive, structured program that
often includes in-house daily training in living skills and 24-hour
Rehabilitation. Three types of rehabilitation programs may help awake coverage by paraprofessionals. Treatment may be pro-
patients during the long-term recovery and maintenance phase of vided in-house or the resident may attend a treatment or reha-
the illness. Rehabilitation may be especially important for pa- bilitation program during the day. Transitional homes can help
tients who need to improve their job skills, want to work, have patients while they are stabilizing after an acute episode and can
worked in the past, and have few remaining symptoms. often serve as the next step after hospitalization or a brief res-
• Psychosocial rehabilitation: a clubhouse program to help pite/crisis home. They can also be helpful during an acute re-
people improve work skills with the goal of getting and lapse if a brief respite/crisis home is not available.
keeping a job. Fountain House and Thresholds are two well-
known examples. Foster or boarding homes: supportive group living situation
• Psychiatric rehabilitation: a program teaching skills that will owned and operated by lay people. Staff usually provide some
allow people to define and achieve personal goals regarding supervision and assistance during the day and a staff member
work, education, socialization, and living arrangements. typically sleeps in the home at night. Foster homes and boarding
• Vocational rehabilitation: a work assessment and training homes are recommended for patients during long-term recovery
program that is usually part of Vocational Rehabilitation and maintenance, especially if other options (living with family,

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Expert Consensus Guideline Series

a supervised/supported apartment, or independent living) are not and stay in treatment in the community. While not a first line
available or do not fit patient/family needs and preferences. treatment, resorting to legal pressure to require compliance
with treatment may sometimes be helpful for patients who
Supervised or supported apartments: a building with several deny their illness and relapse frequently.
one- or two-bedroom apartments, with needed support, assis-
tance, and supervision provided by a specially trained residential Postpsychotic depression
manager who lives in one of the apartments or by periodic visits Depression is not uncommon during the maintenance
from a mental health provider and/or family members. These phase of treatment after the active psychotic symptoms have
types of apartments are recommended for patients during long- resolved. It is important for patients and family members to
term recovery and maintenance. alert the treatment team if a patient who has been improving
develops depressive symptoms, since this can interfere with
Living with family: For some people, living with family may be the person’s recovery and increase the risk of suicide. The
the best long-term arrangement. For others, this may be needed doctor may suggest an antidepressant medication, which can
only during acute episodes, especially if other types of residence help relieve the depression. A psychiatric rehabilitation
are not available or the patient and family prefer to live together. program may benefit patients experiencing postpsychotic
depression who see little hope for the future. Family and
Independent living: This type of living arrangement is strongly patient education can help everyone understand that
recommended during long-term recovery and maintenance, but postpsychotic depression is just a part of the recovery proc-
may not be possible during acute episodes of the illness and for ess and can be treated successfully. Peer self-help groups
patients with a more severe course of illness who may find it may also provide valuable support for patients who have
hard to live independently. postpsychotic depression.

OTHER TREATMENT ISSUES Medical problems associated with schizophrenia

Patients with schizophrenia often get very inadequate care
Hospitalization for their medical illnesses. This is particularly unfortunate
Patients who are acutely ill with schizophrenia may occasion- because they are at increased risk for the complications of
ally require hospitalization to treat serious suicidal inclinations, smoking, obesity, hypertension, substance abuse, diabetes,
severe delusions, hallucinations, or disorganization and to pre- and cardiovascular problems. The experts therefore recom-
vent injury to self or others. Hospitalizations usually last 1 to 2 mend regular monitoring for medical illness and close col-
weeks. However, longer hospitalization may be needed for first laboration between the mental health clinicians and the
episodes or if the person is slow to respond to treatment or has primary care doctor.
other complications.
It is important for family members to be in touch with the WHAT CAN I DO TO HELP MY DISORDER?
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 You and your family should learn as much as possible
family to be proactive in working with the staff to make living about the disorder and its treatments. There are also a number
and financial arrangements for the patient after discharge. Fam- of other things you can do to help cope with the illness and
ily should ask the staff to give them information about the pa- prevent relapses.
tient’s illness and discuss ways to help the patient stick with
outpatient treatment. Avoid alcohol or illicit drugs
The use of these substances provides a short-term lift but
After discharge they have a devastating effect on the long-term course of the
Patients are usually not fully recovered when they are dis- illness. Programs to help control substance problems include
charged from inpatient care. This can be a difficult time with dual diagnosis treatment programs, group therapy, education,
increased risks for relapse, substance abuse, and suicide. It is or counseling. If you can’t stop using alcohol or substances,
important to be sure that a follow-up outpatient appointment you should still take your antipsychotic medication. Although
has been scheduled, ideally within a week after discharge, and mixing the two is not a great idea, stopping the antipsychotic
that the inpatient staff has provided the patient with enough medication is a much worse one.
medication to last until that appointment. Ask the staff for an
around-the-clock phone number to call if there is a problem. It Become familiar with early warning signs of a relapse
is a good idea for someone to call the patient shortly before the Each individual tends to have some “signature” signs that
first appointment as a reminder. If the patient fails to show up, warn of a coming episode. Some individuals may become
everyone should work to make another appointment and to get increasingly suspicious, worry that other people are talking
the person there for it. Good follow-up care is the best way to about them, have altered perceptions, become more irritable
avoid a severe course with repeated revolving-door hospitali- or withdrawn, have trouble interacting with others or ex-
zations. pressing themselves clearly, or express bizarre ideas. Learn
to identify your own warning signals. When these signs
Involuntary outpatient commitment appear, speak to your doctor as soon as possible so that your
Involuntary outpatient commitment and “conditional re- medications can be adjusted. Family members may also be
lease” use a court order to require people to take medication able to help you identify early warning signs of relapse.

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 Treatment of Schizophrenia 1999

Don’t quit your treatment Handling symptoms

It is normal to have occasional doubts and discomfort with Try your best to understand what your loved one is going
treatment. Be sure to discuss your concerns and discomforts with through and how the illness causes upsetting or difficult be-
your doctor, therapist, and family. If you feel a medication is not havior. When people are hallucinating or delusional, it’s
working or you are having trouble with side effects, tell your important to realize that the voices they hear and the images
doctor—don’t stop or adjust your medication on your own. they see are very real to them and difficult to ignore. You
Symptoms that come back after stopping medication are some- should not argue with them, make fun of or criticize them, or
times much harder to treat. Likewise, if you are not satisfied act alarmed.
with the program you are in, talk to your therapist about what After the acute episode has ended, it is a good time for the
other services are available. With all the new treatment options, patient, the family, and the healthcare provider to review what
you, your doctor, and your therapist can work together to find has been learned about the person’s illness in a low-key and
the best and most comfortable program for you. non-blaming way. Everyone can work together to develop
plans for minimizing the problems and distress that future
WHAT CAN FAMILIES AND FRIENDS DO TO HELP? episodes may cause. For example, the family members can
ask the person with schizophrenia to agree that, if they notice
Once you find out that someone close to you has schizophre- warning signs of a relapse, it will be OK for them to contact
nia, expect that it will have a profound impact on your life and the doctor so that the medication can be adjusted to try to
that you will need help in dealing with it. Because so many prevent the relapse.
people are afraid and uninformed about the disease, many fami-
lies try to hide it from friends and deal with it on their own. If Learn the warning signs of suicide
someone in your family has schizophrenia, you need under- Take any threats the person makes very seriously. Seek help
standing, love, and support from others. No one causes schizo- from the patient’s doctor and other family members and
phrenia, just as no one causes diabetes, cancer, or heart disease. friends. Call 911 or a hospital emergency room if the situation
You are not to blame—and you are not alone. becomes desperate. Encourage the person to realize that suici-
dal thinking is a symptom of the illness and will pass in time
Help the person find appropriate treatment and the means to as the treatment takes effect. Always stress that the person’s
pay for it life is important to you and to others and that his or her sui-
The most important thing you can do is to help the person find cide would be a tremendous loss and burden to you, not a
effective treatment and encourage him or her to stick with it. To relief.
find a good doctor or clinic, contact your local mental health
center, ask your own physician for a referral, or contact the Learn to recognize warning signs of relapse
psychiatry department of a university medical school or the Learn the warning signs of a relapse. Stay calm, acknowl-
American Psychiatric Association. You can contact the National edge how the person is feeling, indicate that it is a sign of a
Alliance for the Mentally Ill (NAMI) to consult with others who return of the illness, suggest the importance of getting medical
have a family member with schizophrenia or who have the help, and do what you can to help him or her feel safe and
disorder themselves. more in control.
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 Don’t expect too fast a recovery
may be able to help you through the difficult red tape, but you When people are recovering from an acute psychotic epi-
may also have to contact your local Social Security or social sode, they need to approach life at their own pace. Don’t push
services office directly to find out what benefits are available in too hard. At the same time, don’t be too overprotective. Do
your area and how to apply for them. Finding the way through things with them, rather than for them, so they can regain their
the maze of application processes is difficult even for those who sense of self-confidence. Help the person prioritize recovery
are not ill. A person with schizophrenia will certainly need your goals.
help to obtain adequate benefits. People with schizophrenia may have many health problems.
They often smoke a lot and may have poor nutrition and ex-
Learn about the disorder cessive weight gain. Although you can encourage the patient
If you are a family member or friend of someone with schizo- to try to control these problems, it is important not to put a lot
phrenia, learn all you can about the illness and its treatment. of pressure on him or her. Focus first on the most important
Don’t be shy about asking the doctor and therapist questions. issues: medication adherence and avoiding alcohol and drug
Read books and go to National Alliance for the Mentally Ill use. Your top priority should be to help the patient avoid
(NAMI) meetings. relapse and maintain stability.

Encourage the person to stick with treatment Handling crises

The most important factors in keeping patients out of the In some cases, behavior caused by schizophrenia can be
hospital are for them to take their medications regularly and bizarre and threatening. If you are confronted with such be-
avoid alcohol and street drugs. Work with your loved one to help havior, do your best to stay calm and nonjudgmental, be con-
him or her remember to take the medicine. Long-acting inject- cise and direct in whatever you say, clarify the reality of the
able forms of medication can help patients who find it hard to situation, and be clear about the limits of acceptable behavior.
take a pill every day. Don’t feel that you have to handle the situation alone. Get

7
Expert Consensus Guideline Series

medical help. Your safety and the safety of the ill person The National Mental Health Consumer Self Help Clear-
should always come first. When necessary, call the police or inghouse
911. 1211 Chestnut St., 11th Floor
Philadelphia, PA 19107
Coping with schizophrenia 800-688-4226
Many people find that joining a family support group is a
turning point for them in their struggle to understand the ill- FOR MORE INFORMATION
ness and get help for their relative and themselves. More than
1,000 such groups affiliated with the National Alliance for the The following materials provide more information on schizo-
Mentally Ill (NAMI) are now active in local communities in all phrenia. Most are available through NAMI. To order or to obtain
50 states. Members of these groups share information and a complete publications list, write NAMI or call 703-524-7600.
strategies for everything from coping with symptoms to find-
ing financial, medical, and other resources. Books
Families who deal most successfully with a relative who has Adamec C. How to Live with a Mentally Ill Person: A Hand-
schizophrenia are those who come to accept the illness and its book of Day-to-Day Strategies. Wiley & Sons, 1996.
difficult consequences, develop realistic expectations for the ill Backlar P. The Family Face of Schizophrenia. J P Tarcher, 1994.
person and for themselves, accept all the help and support they Bouricius JK. Psychoactive Drugs and Their Effects on Mentally
can get, and also keep a philosophical perspective and a sense Ill Persons. NAMI, 1996.
of humor. It takes times to develop these attitudes, but the Carter R, Golant SK. Helping Someone with Mental Illness.
understanding support of others can be a great help. Times Books, 1998.
Schizophrenia poses undeniable hardships for everyone in Gorman JM. The New Psychiatry: The Essential Guide to State-
the family. To deal with it in the best possible way, it’s par- of-the-Art Therapy, Medication, and Emotional Health. St.
ticularly important for you to take care of yourself, do things Martins, 1996.
you enjoy, and not allow the illness to consume your life. Hall L, Mark T. The Efficacy of Schizophrenia Treatment.
Experts on schizophrenia believe that recently introduced new NAMI, 1995.
treatments are already a big improvement and that new re- Hatfield A, Lefley HP. Surviving Mental Illness: Stress, Coping,
search discoveries will bring a better understanding of schizo- and Adaptation. Guilford, 1993.
phrenia that will result in even more effective treatments. In Lefley HP. Family Caregiving in Mental Illness. Sage, 1996.
the meantime, help the patient live the best life he or she can Mueser KT, Gingerich S. Coping with Schizophrenia: A Guide
today, and do the same for yourself. for Families. Harbinger Press, 1994.
Torrey EF. Surviving Schizophrenia: For Families, Consumers,
SUPPORT GROUPS and Providers (Third Edition). Harper & Row, 1995.
Weiden PJ. TeamCare Solutions. Eli Lilly, 1997 (to order, call
NAMI 888-997-7392).
The National Alliance for the Mentally Ill (NAMI) is the Weiden PJ, Diamond RJ, Scheifler PL, Ross R. Breakthroughs
national umbrella organization for more than 1,140 local support in Antipsychotic Medications: A Guide for Consumers,
and advocacy groups for families and individuals affected by Families, and Clinicians. Norton, 1999.
serious mental illnesses. To learn more about NAMI or locate Woolis R. When Someone You Love Has Mental Illness: A
your state’s NAMI affiliate or office, contact: Handbook for Family, Friends, and Caregivers.
NAMI Tarcher/Perigee, 1992.
200 N. Glebe Rd., Suite 1015 Wyden P. Conquering Schizophrenia. Knopf, 1998.
Arlington, VA 22203-3754
NAMI Helpline at 800-950-NAMI (800-950-6264). Videos
The following videos may be ordered from: Division of Social
Several other organizations can also help you locate support and Community Psychiatry, Box 3173, Duke University
groups and information: Medical Center, Durham, NC 27710.
Burns BJ, Swartz MS, Executive Producers. Harron B, Producer
National Depressive and Manic-Depressive Association and Director. Hospital without Walls. Department of Psy-
730 N. Franklin St., Suite 501 chiatry, Duke University, 1993.
Chicago IL, 60610-3526 Swartz MS, Executive Producer. Harron B, Producer and Di-
800-82-NDMDA (800-826-3632) rector. Uncertain Journey: Families Coping with Serious
Mental Illness. Department of Psychiatry, Duke University,
National Mental Health Association (NMHA) 1996.
National Mental Health Information Center
1021 Prince Street To request more copies of this handout, please contact NAMI
Alexandria, VA 22314-2971 at 800-950-6264. You can also download the text of this
800-969-6642 handout on the Internet at www.psychguides.com.