SCHIZOPHRENIA

Guidance for Patients,

Families, and Friends
INTRODUCTION INITIAL ASSESSMENT AND EVALUATION
• Schizophrenia is a mental health disorder that can lead What To Expect
to delusions, hallucinations, trouble with thinking and
concentration, bizarre behavior, and lack of motivation. • Seeking medical help is the first important step in the care
process. During the first meeting, a health care professional
• It affects nearly 1 out of every 100 people in the United States, will review how the patient is doing. This assessment is geared
and typically begins in late adolescence or early twenties. towards learning as much as possible about the patient. This
information will help develop a treatment plan that best matches
• When left untreated, it can lead to a lower quality of life and the patient's individual needs.
shortened lifespan.
• The assessment will cover things like:
• Symptoms of schizophrenia can include:
» A patient's goals and preferences for treatment
» Hallucinations: hearing or seeing things that do not exist outside » Current and past symptoms, including risk to self or others
of the mind
» Use of tobacco, alcohol, or any other substances
» Delusions: unusual beliefs not based on reality
» Treatment history and any medications currently or recently taken
» Muddled thoughts or disorganized thinking/speaking
» Current physical and mental health status
» Losing interest in everyday activities, including things like personal
» Any past trauma – physical, sexual, or emotional
hygiene
» Details such as housing, schooling, finances, occupations, and
» Wanting to avoid people, including friends
relationships
• Recovery from schizophrenia is a gradual process that is unique » Medical information and testing:
to each person. ▶ Vital signs (pulse, blood pressure, temperature)
▶ Body weight and height
• When delivered in a timely, coordinated, and sustained manner, ▶ Blood tests to look for high cholesterol or diabetes
medications and psychosocial treatments can reduce symptoms ▶ Pregnancy screening
and help affected individuals to engage in school or work, ▶ Toxicology screen
achieve independence, enjoy personal relationships, and have a ▶ Imaging (CT, MRI, or other)
good quality of life. ▶ Heart monitoring (ECG)

• This guide will help patients and family understand how • Discussions with patients, family members, and/or others in
schizophrenia is diagnosed, what treatment options are available, the support network will also typically occur as part of the
and what can be done to achieve the best possible outcomes. initial evaluation. Additional input will be needed as treatment
proceeds and the treatment plan is updated.

• Every person's situation is different and, after the assessment,

the healthcare clinician will discuss all recommended treatment
options. Choosing the best options will be a shared decision
between the patient and the clinician, often with input from
family members or others in the person's support network.

2 3
INTRODUCTION INITIAL ASSESSMENT AND EVALUATION
• Schizophrenia is a mental health disorder that can lead What To Expect
to delusions, hallucinations, trouble with thinking and
concentration, bizarre behavior, and lack of motivation. • Seeking medical help is the first important step in the care
process. During the first meeting, a health care professional
• It affects nearly 1 out of every 100 people in the United States, will review how the patient is doing. This assessment is geared
and typically begins in late adolescence or early twenties. towards learning as much as possible about the patient. This
information will help develop a treatment plan that best matches
• When left untreated, it can lead to a lower quality of life and the patient's individual needs.
shortened lifespan.
• The assessment will cover things like:
• Symptoms of schizophrenia can include:
» A patient's goals and preferences for treatment
» Hallucinations: hearing or seeing things that do not exist outside » Current and past symptoms, including risk to self or others
of the mind
» Use of tobacco, alcohol, or any other substances
» Delusions: unusual beliefs not based on reality
» Treatment history and any medications currently or recently taken
» Muddled thoughts or disorganized thinking/speaking
» Current physical and mental health status
» Losing interest in everyday activities, including things like personal
» Any past trauma – physical, sexual, or emotional
hygiene
» Details such as housing, schooling, finances, occupations, and
» Wanting to avoid people, including friends
relationships
• Recovery from schizophrenia is a gradual process that is unique » Medical information and testing:
to each person. ▶ Vital signs (pulse, blood pressure, temperature)
▶ Body weight and height
• When delivered in a timely, coordinated, and sustained manner, ▶ Blood tests to look for high cholesterol or diabetes
medications and psychosocial treatments can reduce symptoms ▶ Pregnancy screening
and help affected individuals to engage in school or work, ▶ Toxicology screen
achieve independence, enjoy personal relationships, and have a ▶ Imaging (CT, MRI, or other)
good quality of life. ▶ Heart monitoring (ECG)

• This guide will help patients and family understand how • Discussions with patients, family members, and/or others in
schizophrenia is diagnosed, what treatment options are available, the support network will also typically occur as part of the
and what can be done to achieve the best possible outcomes. initial evaluation. Additional input will be needed as treatment
proceeds and the treatment plan is updated.

• Every person's situation is different and, after the assessment,

the healthcare clinician will discuss all recommended treatment
options. Choosing the best options will be a shared decision
between the patient and the clinician, often with input from
family members or others in the person's support network.

2 3
TREATMENT

Treatment Plan Psychosocial Treatment

• The treatment plan is developed in discussion with the patient • Psychosocial programs and therapies, both in individual and
and includes thoughts, preferences, desires, and goals. group format, help the patient manage symptoms and develop
recovery skills, such as setting and achieving goals. The choice
• Family members and friends can be an important part of the of specific strategies will depend on a patient's unique needs
care team along with the primary care clinician and other health and on what is available in the community.
professionals.
• Medications are a complement to psychosocial treatment and
• It is important to incorporate a patient's own goals into the an equally important part of the overall care process.
treatment plan relating to things such as:
Recommended Psychosocial Treatments and Programs:
» social and other support networks
• Coordinated Specialty Care: incorporates medication, talk therapy,
» personal, family, or other intimate relationships and other treatment into one program. Receiving these treatments
» living situation together can be more helpful than receiving each treatment
separately.
» past trauma or victimization
» school or employment • Cognitive behavioral therapy for psychosis: helps the patient learn
to monitor thoughts, feelings, perceptions, and behaviors and the
» finances and insurance ways they contribute to symptoms.
» parenting (if applicable)
• Psychoeducation: provides education about the disease and its
» legal system involvement (if applicable). treatment as well as how to manage it.

• Supported employment services: provides job training, job

support, and mental health treatment to assist in finding and
Goals of Treatment keeping employment.

» Prevent harm to the patient or » Create both short and long- • Assertive community treatment: uses a team-based approach to
others term treatment plans give individualized care outside of a formal clinical setting, including
home, workplace, or other locations in the community.
» Promote healthy behaviors » Connect the patient with
appropriate support and
» Reduce the severity of Suggested Programs and Therapies:
aftercare
symptoms
• Help and support for family members and those involved in care
» Improve the patient's level of
» Determine and address what
functioning and quality of life • Training programs to help with attention, multi-tasking, memory,
leads to acute episodes
and other areas of thought that are important to daily life, also
» Form a treatment team with called cognitive remediation
clinicians, family, and support
network • Social skills training programs
• Supportive psychotherapy

4 5
TREATMENT

Treatment Plan Psychosocial Treatment

• The treatment plan is developed in discussion with the patient • Psychosocial programs and therapies, both in individual and
and includes thoughts, preferences, desires, and goals. group format, help the patient manage symptoms and develop
recovery skills, such as setting and achieving goals. The choice
• Family members and friends can be an important part of the of specific strategies will depend on a patient's unique needs
care team along with the primary care clinician and other health and on what is available in the community.
professionals.
• Medications are a complement to psychosocial treatment and
• It is important to incorporate a patient's own goals into the an equally important part of the overall care process.
treatment plan relating to things such as:
Recommended Psychosocial Treatments and Programs:
» social and other support networks
• Coordinated Specialty Care: incorporates medication, talk therapy,
» personal, family, or other intimate relationships and other treatment into one program. Receiving these treatments
» living situation together can be more helpful than receiving each treatment
separately.
» past trauma or victimization
» school or employment • Cognitive behavioral therapy for psychosis: helps the patient learn
to monitor thoughts, feelings, perceptions, and behaviors and the
» finances and insurance ways they contribute to symptoms.
» parenting (if applicable)
• Psychoeducation: provides education about the disease and its
» legal system involvement (if applicable). treatment as well as how to manage it.

• Supported employment services: provides job training, job

support, and mental health treatment to assist in finding and
Goals of Treatment keeping employment.

» Prevent harm to the patient or » Create both short and long- • Assertive community treatment: uses a team-based approach to
others term treatment plans give individualized care outside of a formal clinical setting, including
home, workplace, or other locations in the community.
» Promote healthy behaviors » Connect the patient with
appropriate support and
» Reduce the severity of Suggested Programs and Therapies:
aftercare
symptoms
• Help and support for family members and those involved in care
» Improve the patient's level of
» Determine and address what
functioning and quality of life • Training programs to help with attention, multi-tasking, memory,
leads to acute episodes
and other areas of thought that are important to daily life, also
» Form a treatment team with called cognitive remediation
clinicians, family, and support
network • Social skills training programs
• Supportive psychotherapy

4 5
TREATMENT

Treatment with Antipsychotic Medications Comparing Treatment Options

• Medications used for schizophrenia are called antipsychotics. The choice of an antipsychotic medication depends on many factors
that are specific to each patient. Before starting any medication, it is
• The initial goal of treatment with an antipsychotic medication is recommended that the patient discuss treatment-related preferences,
to reduce or eliminate symptoms and allow a rapid return to the any prior treatment responses, potential benefits and risks of each
best level of functioning. medication option, and other factors with the treating clinician.
• These medications can help the patient feel calmer, clear • Oral Medications
confusion, and control other symptoms within hours or days,
but can take a number of weeks to reach their full effect. Over a » Oral medications are convenient for many people because they can
longer term, antipsychotics can help to prevent further episodes be administered at home.
of psychosis.
» Oral concentrates and rapidly dissolving tablets are also available
for anyone who has difficulty swallowing pills.
• The patient might need to try more than one antipsychotic
medication to find the right one. The good thing is that there • Long-acting Injections (LAI)
are many different medication options to choose from. The
» LAI formulations of antipsychotic medications can provide a
patient and the clinician can review the other medication
number of benefits for patients, families, and clinicians, yet they
options that are available, discuss the possible benefits and side
effects of each, and work together to find a medication that will are often underutilized.
be most effective. » LAIs are often convenient for patients since they deliver the
necessary dose of medicine over time, and there are fewer
• If the patient is having success with the prescribed medication, opportunities to forget or miss a medication dose.
it is important to continue taking that same medication
regularly as scheduled. • Clozapine
» Clozapine is usually used in patients whose symptoms are not
• Long-acting injectable medications are good options for improving with other medications and/or those who are having
patients who may have trouble remembering to take their thoughts of hurting themselves or others.
medications regularly.
» Clozapine treatment requires close monitoring of blood work and
• The patient will be advised to keep taking antipsychotic side effects.
medications even after the symptoms are controlled. If the
medications are stopped too early, there is a high risk that
symptoms will return. This may not happen until several months
later.

• Other medications are often added to treat other mental health

symptoms such as depression, anxiety, and side effects of
antipsychotics.

• While taking medications, effectiveness and any potential

side effects will be monitored. If a patient believes he or she is
experiencing side effects, it is important that the doctor be told
BEFORE stopping any prescribed medication.
6 7
TREATMENT

Treatment with Antipsychotic Medications Comparing Treatment Options

• Medications used for schizophrenia are called antipsychotics. The choice of an antipsychotic medication depends on many factors
that are specific to each patient. Before starting any medication, it is
• The initial goal of treatment with an antipsychotic medication is recommended that the patient discuss treatment-related preferences,
to reduce or eliminate symptoms and allow a rapid return to the any prior treatment responses, potential benefits and risks of each
best level of functioning. medication option, and other factors with the treating clinician.
• These medications can help the patient feel calmer, clear • Oral Medications
confusion, and control other symptoms within hours or days,
but can take a number of weeks to reach their full effect. Over a » Oral medications are convenient for many people because they can
longer term, antipsychotics can help to prevent further episodes be administered at home.
of psychosis.
» Oral concentrates and rapidly dissolving tablets are also available
for anyone who has difficulty swallowing pills.
• The patient might need to try more than one antipsychotic
medication to find the right one. The good thing is that there • Long-acting Injections (LAI)
are many different medication options to choose from. The
» LAI formulations of antipsychotic medications can provide a
patient and the clinician can review the other medication
number of benefits for patients, families, and clinicians, yet they
options that are available, discuss the possible benefits and side
effects of each, and work together to find a medication that will are often underutilized.
be most effective. » LAIs are often convenient for patients since they deliver the
necessary dose of medicine over time, and there are fewer
• If the patient is having success with the prescribed medication, opportunities to forget or miss a medication dose.
it is important to continue taking that same medication
regularly as scheduled. • Clozapine
» Clozapine is usually used in patients whose symptoms are not
• Long-acting injectable medications are good options for improving with other medications and/or those who are having
patients who may have trouble remembering to take their thoughts of hurting themselves or others.
medications regularly.
» Clozapine treatment requires close monitoring of blood work and
• The patient will be advised to keep taking antipsychotic side effects.
medications even after the symptoms are controlled. If the
medications are stopped too early, there is a high risk that
symptoms will return. This may not happen until several months
later.

• Other medications are often added to treat other mental health

symptoms such as depression, anxiety, and side effects of
antipsychotics.

• While taking medications, effectiveness and any potential

side effects will be monitored. If a patient believes he or she is
experiencing side effects, it is important that the doctor be told
BEFORE stopping any prescribed medication.
6 7
TREATMENT

Managing Side Effects Adherence (following a treatment plan)

• Patients may experience side effects while taking certain • Adherence to medications and other psychosocial approaches
medications for schizophrenia. This is normal but should be can be a big factor in predicting long-term success and quality
shared with the treating clinician. of life.

• Early in the course of treatment, common side effects include • Some common issues that may influence adherence include:
weight gain, being tired or drowsy, changes in blood pressure,
» Lack of awareness of symptoms
restlessness, dry mouth, constipation, and difficulty with
urination. » Difficulties managing complex tasks
» Difficulties due to other conditions
• Individuals taking an antipsychotic medication may also notice
one or more of the following symptoms. It is important to talk to » Understanding need for treatment
the clinician as soon as possible if any of these symptoms occur: » Understanding risks and side effects

» Dystonia: uncontrollable contractions of muscles » Forgetting medication or appointments

» Parkinson-like symptoms: tremor and slowed movement » Financial or insurance-related barriers

» Limited local services
» Akathisia: a feeling of restlessness
» Lack of support from family or significant others.
» Tardive dyskinesia: uncontrollable movements that commonly
occur in the face, neck, or tongue • If any of these common issues are present, it is important to
» Sexual effects: changes in sexual desire or sexual functioning. discuss them with the treating clinician.

• Antipsychotic medications can also have metabolic side effects • Addressing these barriers as part of the treatment plan will
such as weight gain and diabetes. require active collaboration and problem-solving between a
patient and their care team.
• If any of these side effects are severe or disabling, the treating
clinician may:

» Lower the dosage of the current medication

» Switch to a different medication
» Provide additional medications to help reduce or eliminate the
side effects.

8 9
TREATMENT

Managing Side Effects Adherence (following a treatment plan)

• Patients may experience side effects while taking certain • Adherence to medications and other psychosocial approaches
medications for schizophrenia. This is normal but should be can be a big factor in predicting long-term success and quality
shared with the treating clinician. of life.

• Early in the course of treatment, common side effects include • Some common issues that may influence adherence include:
weight gain, being tired or drowsy, changes in blood pressure,
» Lack of awareness of symptoms
restlessness, dry mouth, constipation, and difficulty with
urination. » Difficulties managing complex tasks
» Difficulties due to other conditions
• Individuals taking an antipsychotic medication may also notice
one or more of the following symptoms. It is important to talk to » Understanding need for treatment
the clinician as soon as possible if any of these symptoms occur: » Understanding risks and side effects

» Dystonia: uncontrollable contractions of muscles » Forgetting medication or appointments

» Parkinson-like symptoms: tremor and slowed movement » Financial or insurance-related barriers

» Limited local services
» Akathisia: a feeling of restlessness
» Lack of support from family or significant others.
» Tardive dyskinesia: uncontrollable movements that commonly
occur in the face, neck, or tongue • If any of these common issues are present, it is important to
» Sexual effects: changes in sexual desire or sexual functioning. discuss them with the treating clinician.

• Antipsychotic medications can also have metabolic side effects • Addressing these barriers as part of the treatment plan will
such as weight gain and diabetes. require active collaboration and problem-solving between a
patient and their care team.
• If any of these side effects are severe or disabling, the treating
clinician may:

» Lower the dosage of the current medication

» Switch to a different medication
» Provide additional medications to help reduce or eliminate the
side effects.

8 9
RECOVERY AND SUPPORT

Recovery and Relapse Prevention

• Each person’s recovery is unique. Recovery is not a straight line

but rather a winding road that may include bumps and potholes
as well as smooth sailing.

• Coping with a mental disorder as serious as schizophrenia can

be challenging, both for the patient and for friends and family.
Some ways a patient can improve the likelihood for a successful
outcome include:
HELP IS OUT THERE!
» Learn as much as possible about schizophrenia: this includes
The most important thing is that many treatment options
potential signs of relapse.
and resources are out there. Individuals with schizophrenia
» Learn what does or doesn’t work and use it to an advantage. and their families don't have to struggle alone.
A comprehensive mix of medication, psychosocial therapy,
» Stay focused on goals and adherence: don’t lose sight of the
and community support programs can help those with
bigger picture but still take things one day at a time.
schizophrenia get back to living their best life!
» Avoid tobacco, alcohol, and other drugs: this is among the most
important choices to be made to improve overall health. These
substances can also interfere with prescribed medications. Resources and Support Services:
» Practice relaxation and stress management: learn what triggers
• American Psychiatric Association – Find a Psychiatrist
are and how to control them in a constructive way.
» Continue to seek support and maintain social networks: this could » http://finder.psychiatry.org/
be a support group, regular contact with friends and family, or all
• SAMHSA Services Locator
of the above. Local groups through National Alliance on Mental
Illness (www.nami.org) can be helpful for patients, families, and » https://findtreatment.samhsa.gov/
friends.
• National Institute of Mental Health
» Maintain good health and hygiene: physical health, exercise,
nutrition, and more are all key to maintaining recovery and » https://www.nimh.nih.gov/index.shtml
preventing relapse.
• Mental Health America

» https://www.mhanational.org/

• National Alliance on Mental Illness

» http://www.nami.org/

• Schizophrenia and Related Disorders Alliance of America

» https://sardaa.org/

10 11
RECOVERY AND SUPPORT

Recovery and Relapse Prevention

• Each person’s recovery is unique. Recovery is not a straight line

but rather a winding road that may include bumps and potholes
as well as smooth sailing.

• Coping with a mental disorder as serious as schizophrenia can

be challenging, both for the patient and for friends and family.
Some ways a patient can improve the likelihood for a successful
outcome include:
HELP IS OUT THERE!
» Learn as much as possible about schizophrenia: this includes
The most important thing is that many treatment options
potential signs of relapse.
and resources are out there. Individuals with schizophrenia
» Learn what does or doesn’t work and use it to an advantage. and their families don't have to struggle alone.
A comprehensive mix of medication, psychosocial therapy,
» Stay focused on goals and adherence: don’t lose sight of the
and community support programs can help those with
bigger picture but still take things one day at a time.
schizophrenia get back to living their best life!
» Avoid tobacco, alcohol, and other drugs: this is among the most
important choices to be made to improve overall health. These
substances can also interfere with prescribed medications. Resources and Support Services:
» Practice relaxation and stress management: learn what triggers
• American Psychiatric Association – Find a Psychiatrist
are and how to control them in a constructive way.
» Continue to seek support and maintain social networks: this could » http://finder.psychiatry.org/
be a support group, regular contact with friends and family, or all
• SAMHSA Services Locator
of the above. Local groups through National Alliance on Mental
Illness (www.nami.org) can be helpful for patients, families, and » https://findtreatment.samhsa.gov/
friends.
• National Institute of Mental Health
» Maintain good health and hygiene: physical health, exercise,
nutrition, and more are all key to maintaining recovery and » https://www.nimh.nih.gov/index.shtml
preventing relapse.
• Mental Health America

» https://www.mhanational.org/

• National Alliance on Mental Illness

» http://www.nami.org/

• Schizophrenia and Related Disorders Alliance of America

» https://sardaa.org/

10 11
FREQUENTLY ASKED QUESTIONS

• Does schizophrenia mean a person has multiple personalities?

» No. Although this is a common misunderstanding, schizophrenia is

not related to having a split personality or multiple personalities.

• When should someone see a doctor or seek medical advice?

» If a person is experiencing symptoms of schizophrenia or any

other medical or mental health symptoms, that person should see
a doctor as soon as possible. On average, the earlier schizophrenia
is treated, the better the outcome.

• What causes schizophrenia?

• How long does schizophrenia last?
» The causes of schizophrenia are not yet fully understood. Some
things that may make it more likely or worsen it are: genetics and » It is different for everyone. Some people have only a single
family history, injuries to the brain, complications from pregnancy episode of schizophrenia-related psychosis. Other people have
and birth, traumatic experiences, and drug use. periods with increased symptoms throughout their lives. While
there is no "cure," with appropriate treatment as well as support
from healthcare professionals, family, friends, and others, patients
can learn to cope with the condition and live a normal, healthy life.
• What are the symptoms of schizophrenia?

» Symptoms differ in each person, but the most common are:

• hallucinations: hearing or seeing things that do not exist outside • What should friends, family, coworkers, or others know about a
of the mind schizophrenia diagnosis?
• delusions: unusual beliefs not based on reality » It’s up to the patient how much information about personal health
is disclosed to friends, family, or anyone else. This guide can help
• muddled thoughts or disorganized thinking/speaking others understand schizophrenia.
• losing interest in everyday activities, including things like
personal hygiene
• wanting to avoid people, including friends

12 13
FREQUENTLY ASKED QUESTIONS

• Does schizophrenia mean a person has multiple personalities?

» No. Although this is a common misunderstanding, schizophrenia is

not related to having a split personality or multiple personalities.

• When should someone see a doctor or seek medical advice?

» If a person is experiencing symptoms of schizophrenia or any

other medical or mental health symptoms, that person should see
a doctor as soon as possible. On average, the earlier schizophrenia
is treated, the better the outcome.

• What causes schizophrenia?

• How long does schizophrenia last?
» The causes of schizophrenia are not yet fully understood. Some
things that may make it more likely or worsen it are: genetics and » It is different for everyone. Some people have only a single
family history, injuries to the brain, complications from pregnancy episode of schizophrenia-related psychosis. Other people have
and birth, traumatic experiences, and drug use. periods with increased symptoms throughout their lives. While
there is no "cure," with appropriate treatment as well as support
from healthcare professionals, family, friends, and others, patients
can learn to cope with the condition and live a normal, healthy life.
• What are the symptoms of schizophrenia?

» Symptoms differ in each person, but the most common are:

• hallucinations: hearing or seeing things that do not exist outside • What should friends, family, coworkers, or others know about a
of the mind schizophrenia diagnosis?
• delusions: unusual beliefs not based on reality » It’s up to the patient how much information about personal health
is disclosed to friends, family, or anyone else. This guide can help
• muddled thoughts or disorganized thinking/speaking others understand schizophrenia.
• losing interest in everyday activities, including things like
personal hygiene
• wanting to avoid people, including friends

12 13
Source
American Psychiatric Association: Practice Guideline for the Treatment of Patients With
Schizophrenia, 3rd Edition. Washington, DC, American Psychiatric Publishing, 2021.

Disclaimer
This pocket guide attempts to define principles of practice that should produce high-quality
patient care. It is applicable to specialists, primary care, and providers at all levels. This pocket
guide should not be considered exclusive of other methods of care reasonably directed at
obtaining the same results. The ultimate judgment concerning the propriety of any course of
conduct must be made by the clinician after consideration of each individual patient situation.
Neither IGC, the medical association, nor the authors endorse any product or service associated
with the distributor of this clinical reference tool.

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