Schizophrenia: Guidance for Patients, Families, and Friends

• Schizophrenia is a mental health disorder that can lead to delusions, hallucinations, trouble with thinking and concentration, bizarre behavior, and lack of motivation.
• It affects nearly 1 out of every 100 people in the United States, and typically begins in late adolescence or early twenties.
• When left untreated, it can lead to a lower quality of life and shortened lifespan.
• Symptoms of schizophrenia can include:
  • Hallucinations: hearing or seeing things that do not exist outside of the mind
  • Delusions: unusual beliefs not based on reality
  • Muddled thoughts or disorganized thinking/speaking
  • Losing interest in everyday activities, including things like personal hygiene
  • Wanting to avoid people, including friends
• Recovery from schizophrenia is a gradual process that is unique to each person.
• When delivered in a timely, coordinated, and sustained manner, medications and psychosocial treatments can reduce symptoms and help affected individuals to engage in school or work, achieve independence, enjoy personal relationships, and have a good quality of life.
• This guide will help patients and family understand how schizophrenia is diagnosed, what treatment options are available, and what can be done to achieve the best possible outcomes.

• Seeking medical help is the first important step in the care process. During the first meeting, a health care professional will review how the patient is doing. This assessment is geared towards learning as much as possible about the patient. This information will help develop a treatment plan that best matches the patient's individual needs.
• The assessment will cover things like:
  • A patient's goals and preferences for treatment
  • Current and past symptoms, including risk to self or others
  • Use of tobacco, alcohol, or any other substances
  • Treatment history and any medications currently or recently taken
  • Current physical and mental health status
  • Any past trauma – physical, sexual, or emotional
  • Details such as housing, schooling, finances, occupations, and relationships
  • Medical information and testing:
    • Vital signs (pulse, blood pressure, temperature)
    • Body weight and height
    • Blood tests to look for high cholesterol or diabetes
    • Pregnancy screening
    • Toxicology screen
    • Imaging (CT, MRI, or other)
    • Heart monitoring (ECG)
• Discussions with patients, family members, and/or others in the support network will also typically occur as part of the 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.

• The treatment plan is developed in discussion with the patient and includes thoughts, preferences, desires, and goals.
• Family members and friends can be an important part of the care team along with the primary care clinician and other health professionals.
• It is important to incorporate a patient's own goals into the treatment plan relating to things such as:
  • social and other support networks
  • personal, family, or other intimate relationships
  • living situation
  • past trauma or victimization
  • school or employment
  • finances and insurance
  • parenting (if applicable)
  • legal system involvement (if applicable)

• Prevent harm to the patient or others
• Promote healthy behaviors
• Reduce the severity of symptoms
• Determine and address what leads to acute episodes
• Form a treatment team with clinicians, family, and support network
• Create both short and long-term treatment plans
• Connect the patient with appropriate support and aftercare
• Improve the patient's level of functioning and quality of life

• Psychosocial programs and therapies, both in individual and group format, help the patient manage symptoms and develop recovery skills, such as setting and achieving goals. The choice of specific strategies will depend on a patient's unique needs and on what is available in the community.
• Medications are a complement to psychosocial treatment and an equally important part of the overall care process.

• Coordinated Specialty Care: incorporates medication, talk therapy, and other treatment into one program. Receiving these treatments together can be more helpful than receiving each treatment separately.
• Cognitive behavioral therapy for psychosis: helps the patient learn to monitor thoughts, feelings, perceptions, and behaviors and the ways they contribute to symptoms.
• Psychoeducation: provides education about the disease and its 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 keeping employment.
• Assertive community treatment: uses a team-based approach to give individualized care outside of a formal clinical setting, including home, workplace, or other locations in the community.

• Help and support for family members and those involved in care
• Training programs to help with attention, multi-tasking, memory, and other areas of thought that are important to daily life, also called cognitive remediation
• Social skills training programs
• Supportive psychotherapy

• Medications used for schizophrenia are called antipsychotics.
• The initial goal of treatment with an antipsychotic medication is to reduce or eliminate symptoms and allow a rapid return to the best level of functioning.
• These medications can help the patient feel calmer, clear confusion, and control other symptoms within hours or days, but can take a number of weeks to reach their full effect. Over a longer term, antipsychotics can help to prevent further episodes of psychosis.
• The patient might need to try more than one antipsychotic medication to find the right one. The good thing is that there are many different medication options to choose from. The patient and the clinician can review the other medication options that are available, discuss the possible benefits and side effects of each, and work together to find a medication that will be most effective.
• If the patient is having success with the prescribed medication, it is important to continue taking that same medication regularly as scheduled.
• Long-acting injectable medications are good options for patients who may have trouble remembering to take their medications regularly.
• The patient will be advised to keep taking antipsychotic 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.

The choice of an antipsychotic medication depends on many factors that are specific to each patient. Before starting any medication, it is recommended that the patient discuss treatment-related preferences, any prior treatment responses, potential benefits and risks of each medication option, and other factors with the treating clinician.

• Oral Medications
  • Oral medications are convenient for many people because they can be administered at home.
  • Oral concentrates and rapidly dissolving tablets are also available for anyone who has difficulty swallowing pills.
• Long-acting Injections (LAI)
  • LAI formulations of antipsychotic medications can provide a number of benefits for patients, families, and clinicians, yet they are often underutilized.
  • LAIs are often convenient for patients since they deliver the necessary dose of medicine over time, and there are fewer opportunities to forget or miss a medication dose.
• Clozapine
  • Clozapine is usually used in patients whose symptoms are not improving with other medications and/or those who are having thoughts of hurting themselves or others.
  • Clozapine treatment requires close monitoring of blood work and side effects.

• Patients may experience side effects while taking certain medications for schizophrenia. This is normal but should be shared with the treating clinician.
• Early in the course of treatment, common side effects include weight gain, being tired or drowsy, changes in blood pressure, restlessness, dry mouth, constipation, and difficulty with urination.
• Individuals taking an antipsychotic medication may also notice one or more of the following symptoms. It is important to talk to the clinician as soon as possible if any of these symptoms occur:
  • Dystonia: uncontrollable contractions of muscles
  • Parkinson-like symptoms: tremor and slowed movement
  • Akathisia: a feeling of restlessness
  • Tardive dyskinesia: uncontrollable movements that commonly occur in the face, neck, or tongue
  • Sexual effects: changes in sexual desire or sexual functioning
• Antipsychotic medications can also have metabolic side effects such as weight gain and diabetes.
• 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

• Adherence to medications and other psychosocial approaches can be a big factor in predicting long-term success and quality of life.
• Some common issues that may influence adherence include:
  • Lack of awareness of symptoms
  • Difficulties managing complex tasks
  • Difficulties due to other conditions
  • Understanding need for treatment
  • Understanding risks and side effects
  • Forgetting medication or appointments
  • Financial or insurance-related barriers
  • Limited local services
  • Lack of support from family or significant others
• If any of these common issues are present, it is important to discuss them with the treating clinician.
• Addressing these barriers as part of the treatment plan will require active collaboration and problem-solving between a patient and their care team.

• 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:
  • Learn as much as possible about schizophrenia: this includes potential signs of relapse.
  • Learn what does or doesn’t work and use it to an advantage.
  • Stay focused on goals and adherence: don’t lose sight of the bigger picture but still take things one day at a time.
  • 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.
  • Practice relaxation and stress management: learn what triggers are and how to control them in a constructive way.
  • Continue to seek support and maintain social networks: this could be a support group, regular contact with friends and family, or all of the above. Local groups through National Alliance on Mental Illness (www.nami.org ) can be helpful for patients, families, and friends.
  • Maintain good health and hygiene: physical health, exercise, nutrition, and more are all key to maintaining recovery and preventing relapse.

HELP IS OUT THERE!

• American Psychiatric Association – Find a Psychiatrist
  • http://finder.psychiatry.org/
• SAMHSA Services Locator
  • https://findtreatment.samhsa.gov/
• National Institute of Mental Health
  • https://www.nimh.nih.gov/index.shtml
• Mental Health America
  • https://www.mhanational.org/
• National Alliance on Mental Illness
  • http://www.nami.org/
• Schizophrenia & Psychosis Action Alliance
  • https://sczaction.org/

• What causes schizophrenia?
  • The causes of schizophrenia are not yet fully understood. Some things that may make it more likely or worsen it are: genetics and family history, injuries to the brain, complications from pregnancy and birth, traumatic experiences, and drug use.
• 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 of the mind
    • delusions: unusual beliefs not based on reality
    • muddled thoughts or disorganized thinking/speaking
    • losing interest in everyday activities, including things like personal hygiene
    • wanting to avoid people, including friends
• 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.
• How long does schizophrenia last?
  • It is different for everyone. Some people have only a single episode of schizophrenia-related psychosis. Other people have 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 should friends, family, coworkers, or others know about a schizophrenia diagnosis?
  • It’s up to the patient how much information about personal health is disclosed to friends, family, or anyone else. This guide can help others understand schizophrenia.