British Columbia Schizophrenia Society 2001
“Families Helping Families” Table of Contents
What is Psychosis? . 2 First Episode and Types of Psychosis . 3 Symptoms . 6 Time is of the Essence . 8 Early Warning Signs . 9 How Families are Affected.10 Guidelines for Families & Friends .11 Finding Effective Medical Help .16 Recovery.19 FAQ’s: Frequently Asked Questions .20 “I’m a Teacher What Can I Do?”.23 Myths and Misconceptions .25 Education Programs .26 BC Schizophrenia Society (BCSS) Branches. 28 Regional Family Coordinators .29 Family Support Outside BC. .30 Glossary .31 The BC Mental Health Act .35
Early Psychosis Education Resources What is Psychosis?
Psychosis can happen to anyone. Like any other illness, it can be treated… FACTS:
• Psychosis often strikes young people in their prime
• Psychosis distorts the senses, making it very difficult for the ill
person to tell what is real from what is not real
• Usual age for occurrence of first-episode psychosis is 16 to 25
• Men and women are affected with equal frequency, but:
∗ For men, the age of onset for schizophrenia is often
∗ For women, the age of onset is sometimes later—
• Medical assessment and treatment are necessary • Early assessment, education and treatment greatly improve outcomes for the individual and their family.
The word psychosis is used to describe medical conditions that affect the brain, so that there is loss of contact with reality. When someone becomes ill in this way, it is called a psychotic episode. Psychosis is most likely to occur in young adults and is quite common. About 3 out of every 100 people will experience a psychotic episode, making psychosis more common than diabetes. Most people make a full recovery from the experience.
Early Psychosis: What Families and Friends Need to Know — First-Episode Psychosis
First-episode psychosis refers to the first time a person experiences psychotic symptoms. Someone experiencing a first-episode psychosis may not understand what is happening. Symptoms are unfamiliar and frightening, leaving the person confused and distressed. If they do not know the facts and have no real understanding about mental illness, their distress may be increased by negative myths and stereotypes. A psychotic episode occurs in three phases. The length of each phase varies from person to person. Phase 1: Prodrome The early signs of psychosis are vague and sometimes hardly noticeable. There may be changes in the way people describe their feelings, thoughts and perceptions. Phase 2: Acute Clear psychotic symptoms are experienced, such as disorganized thinking, hallucinations, or delusions. Phase 3: Recovery Psychosis is treatable and most people recover. The pattern of recovery varies from person to person. People recover from first-episode psychosis. Many never experience another psychotic episode.
Types of Psychosis
When someone has a psychosis, a particular psychotic illness is usually diagnosed. Diagnosis means identification of an illness by symptoms, so the person’s diagnosis will depend on what may have triggered the illness and how long the symptoms last. When someone experiences psychosis for the first time, it can be difficult to make an exact diagnosis, because many of the factors underlying the illness may be unclear. Nevertheless, it is helpful to understand some of the diagnostic labels you might hear. Early Psychosis: What Families and Friends Need to Know — Drug- Induced Psychosis Using or withdrawing from drugs and alcohol can cause psychotic symptoms. Sometimes these symptoms will rapidly disappear as the substance wears off. In other cases, the illness may last longer, but begin with a drug-induced psychosis. Organic Psychosis Psychotic symptoms may appear due to a head injury or a physical illness that disrupts brain functioning, such as encephalitis, AIDS or a tumour. There are usually other symptoms present, such as memory problems or confusion. Brief Reactive Psychosis Psychotic symptoms may arise suddenly in response to major stress in someone's life, such as a death in the family or other important change of circumstances. Symptoms can be severe, but the person makes a quick recovery in only a few days. Schizophrenia Schizophrenia refers to an illness in which the changes in behaviour or symptoms have been present for a period of at least six months. Again, symptoms, severity and length of illness vary from person to person. Contrary to previous beliefs, schizophrenia is a fairly common illness (one in 100), and many people with schizophrenia lead happy and fulfilling lives. Schizophreniform Disorder This diagnosis is usually given when symptoms have lasted for less than six months. Bipolar Disorder (Manic Depression) Bipolar disorder is a "mood disorder”. Psychosis appears as part of a more general disturbance in mood, which is characterized by extreme highs (mania) and lows (depression). Psychotic symptoms tend to fit with the person's mood. If they are unusually excited or happy, they may believe they are special and can perform amazing feats. If they are depressed, they may hear voices telling them to commit suicide. Major Depression Also a "mood disorder". This is severe clinical depression with psychotic symptoms but without periods of mania or highs occurring during the illness. Schizoaffective Disorder This diagnosis is made when the clinical picture is not "typical" of either a mood disorder or schizophrenia, but the person has concurrent or consecutive symptoms of both illnesses. * Information in this section adapted from the Early Psychosis Prevention and Intervention Centre (EPPIC), Melbourne, Australia Early Psychosis: What Families and Friends Need to Know — Causes of Psychosis
Several theories exist regarding the causes psychosis, but there is still much research to be done. What is known at the moment indicates that psychosis may be caused by a combination of biological factors that create a vulnerability to psychosis during adolescence or early adult life. Symptoms can emerge in response to stress or drug use, or they may be biologically determined to emerge at a certain stage of development regardless of life experience. In first-episode psychosis, the cause is particularly unclear. Therefore, it is necessary for the person to have a complete medical examination including neurological workup to make
the diagnosis as clear as possible. The course and outcome of psychosis varies considerably from person to person. The earlier psychosis is recognized, medically assessed and treated the better the outlook. Early Psychosis: What Families and Friends Need to Know — Symptoms
Just as other illnesses have signs or symptoms, so does psychosis. Symptoms are not identical for everyone. Some people may have only one episode of psychosis in their lifetime. Others may have recurring episodes, but lead relatively normal lives in between. Others may have severe symptoms for a lifetime. Psychosis always involves a change in ability and personality. Family members and friends notice that the person is "not the same." Because they are experiencing perceptual difficulties—trouble knowing what is real from what is not real—the person who is ill often begins to withdraw as their symptoms become more pronounced. Deterioration is usually observed in:
To understand the experience of psychosis, it is useful to group together some of the more characteristic symptoms:
• Personality change is often a key to recognizing psychosis. At first,
changes may be subtle, minor and go unnoticed. Eventually, such changes become obvious to family, friends, classmates or co-workers. There is a loss or lack of emotion, interest and motivation. A normally outgoing person may become withdrawn, quiet, or moody. Emotions may be inappropriate—the person may laugh in a sad situation, or cry over a joke—or may be unable to show any emotion at all.
• Thought disorder is the most profound change, since it prevents clear
thinking and rational response. Thoughts may be slow to form, or come extra fast, or not at all. The person may jump from topic to topic, seem confused, or have difficulty making simple decisions.
• Delusions —false beliefs that have no logical basis may colour
thinking. Some people feel they are being persecuted, spied on or plotted against. They may be convinced the police are watching them. Or they may have grandiose delusions; believe they are all-powerful, capable of anything, even invulnerable to danger. They may also have a strong religious drive, believing they have a personal mission to right the wrongs of the world.
Early Psychosis: What Families and Friends Need to Know — • Perceptual changes turn the world of the ill person topsy-turvy. Sensory
messages to the brain from the eyes, ears, nose, skin, and taste buds become confused—and the person may actually hear, see, smell or feel sensations that are not real. These are hallucinations.
People with psychosis will often hear voices. Sometimes the voices are threatening or condemning; they may also give direct orders such as, "kill yourself”. There is always a danger that such commands will be obeyed. People who are ill may also have visual hallucinations—a door in a wall where no door exists; a lion, a tiger, or a long-dead relative may suddenly appear. Colours, shapes, and faces may change before the person's eyes. There may also be hypersensitivity to sounds, tastes, and smells. A ringing telephone might seem as loud as a fire alarm bell, or a loved one's voice as threatening as a barking dog. Sense of touch may also be distorted. Someone may literally “feel” their skin is crawling—or conversely, they may feel nothing, not even pain from a real injury.
• Sense of Self: When one or all five senses are affected, the person may
feel out of time, out of space—free floating and bodiless—and non-existent as a person.
Someone who is experiencing such profound and frightening changes will often try to keep them a secret.
There is often a strong need to deny what is happening, and to avoid other people and situations where the fact that one is “different” might be discovered. Intense misperceptions of reality trigger feelings of dread, panic, fear, and anxiety—natural reactions to such terrifying experiences.
Psychological distress is intense, but the person will often try to keep it hidden due to a strong sense of either denial of fear.
People with psychosis need understanding, patience, and reassurance that they will not be abandoned. Early Psychosis: What Families and Friends Need to Know — Time is of the Essence… GOALS OF EARLY INTERVENTION
• Preservation of psychosocial skills, social and environmental
• Reduced secondary morbidity (depression, cognitive damage,
WHY EARLY TREATMENT?
• Treatment delays can cause illness to worsen, and to be less
• Early treatment reduces the risk of cognitive damage memory
loss, impaired executive functioning, learning disabilities that
accompanies brain changes in some illnesses, such as schizophrenia
• Timely and appropriate treatment maximizes better long-term
• The longer the illness goes untreated, the longer it takes for
• The less remission there is, the higher the risk of relapse.
Early Psychosis: What Families and Friends Need to Know — Early Warning Signs The following list of warning signs was developed by people whose family members have suffered from psychosis. Many behaviours described are within the range of normal responses to situations, especially for young people. Yet families sense—even when symptoms are mild—that behaviour is “unusual”; that the person is somehow "not the same". The number and severity of these symptoms differ from person to person— although almost everyone mentions noticeable social withdrawal. • Deterioration of personal hygiene
• Sleeping excessively or inability
Early Psychosis: What Families and Friends Need to Know — How Families Are Affected “The typical family of a young person suffering from psychosis is often in chaos. Parents may look frantically for answers or try to deny that anything is wrong; siblings want to flee. If the ill person doesn’t receive proper medical care, the family may be destroyed no matter how hard they try to survive.” — Mother of a young man with psychosis
When parents learn their child is suffering from psychosis, they may experience a range of strong emotions. They may be shocked, sad, angry, confused, and dismayed. Some have described their reactions as follows: ∗ Sorrow ("We feel like we’ve lost our child.")
∗ Anxiety ("We're afraid to leave him alone or hurt his feelings.")
∗ Fear ("Will the ill person harm himself or others?")
∗ Shame and guilt ("Are we to blame? What will people think?")
∗ Feelings of isolation ("No one else could ever understand.")
∗ Ambivalence toward the afflicted person ("We love him so much, but when his illness makes him so aggressive, we wish he'd just go away.")
∗ Anger and jealousy ("Siblings resent the attention given to the ill family
∗ Depression (“We can't even talk without crying.")
∗ Total denial of the illness ("This can't be happening to our family.")
∗ Blaming each other (“If you had been a better parent.")
∗ Marital discord ("Our relationship became cold. I felt dead inside.")
∗ Divorce ("It just tore our family apart.")
∗ Preoccupation with "moving away" ("Maybe if we lived somewhere else,
∗ Sleeplessness ("I've aged double time in the last seven years.")
∗ Weight loss ("We’ve been through the mill, and it shows in our health.")
∗ Withdrawal from social activities ("We don't attend family get-togethers.")
∗ Excessive searching for possible explanations ("Was it something we did?)
∗ Increased use of alcohol or tranquilizers ("Our evening drink turned into
∗ Fear of the future (“What's going to happen? Who will take care of our child if he doesn’t get better?")
Early Psychosis: What Families and Friends Need to Know — Guidelines for Families and Friends 1. LEARN TO RECOGNIZE SYMPTOMS
When odd behaviour is experienced or observed, it makes good sense to seek advice from a doctor. Acute psychosis may occur suddenly, but more often it will develop over a period of time. The following symptoms are important:
▪ Marked change in personality ▪ A constant feeling of being watched ▪ Difficulty controlling one's thoughts ▪ Inability to “turn off the imagination” ▪ Hearing voices or sounds others don’t hear ▪ Increased withdrawal from social contacts ▪ Seeing people or things that others don’t see ▪ Difficulties with language—words do not make sense ▪ Sudden excesses, such as extreme religiosity ▪ Irrational, angry, or fearful responses to loved ones ▪ Sleeplessness and agitation
These symptoms, even in combination, may not be evidence of psychosis. They could be the result of injury, drug use, or extreme emotional distress (see What is Psychosis on pages 3 and 4). 2. GET PROPER MEDICAL HELP • Take the initiative. If symptoms of psychosis are occurring, ask your doctor for an assessment or referral. Family members and friends are usually the first to notice symptoms and suggest medical help. Remember, if the ill person accepts hallucinations and delusions as reality, they may resist treatment. • Be persistent. Find a doctor who is familiar with psychosis. The assessment and treatment of early psychosis should be done by people who are well-qualified. Choose a physician who has an interest in this area, someone who is competent and has empathy with patients and their families. Early Psychosis: What Families and Friends Need to Know — Remember—if you lack confidence in a physician or psychiatrist, you always have the right to seek a second opinion. • Assist the doctor/psychiatrist. Patients with psychosis may not be able to volunteer much information during an assessment. Talk to the doctor yourself, or write a letter describing your concerns. Be specific. Be persistent. The information you supply can help the physician towards more accurate assessment and treatment. • Other sources of assessment and treatment: The Ministry of Health and the Ministry of Children and Families are the government departments responsible for Mental Health Services in British Columbia. Assessment and treatment are available through regional Mental Health centres throughout the province. Check your phone book, or call theBC Schizophrenia Society to find the one nearest you. If the young person is still in school, the school counsellor should also be able to assist with a referral. Making First Contact!
∗ Rehearse before you call. State what you need
∗ Make a note of the names of the people you talk
to, along with the date and approximate time.
∗ If you cannot get the help or information you
need, ask to speak to a case manager, supervisor, or the person in charge.
∗ If you cannot immediately reach the doctor or
case manager, ask when you may expect a return call, or when the person will be free for you to call back.
Early Psychosis: What Families and Friends Need to Know — 3. MAKING THE MOST OF TREATMENT
There may be exchanges between doctor and patient that a patient feels are of a highly personal nature and wants to keep confidential. However, family members or close friends often need information related to care and treatment. You should be able to discuss the following with the doctor:
Provide plenty of support and loving care. Help the person accept their illness by dealing with it in a matter of fact manner. Try to show by your attitude and behaviour that there is hope, that things can be managed, and that life can be satisfying and productive. Help the person maintain a record of information on:
• Effects of various types of treatment
4. LEARN TO RECOGNIZE SIGNS OF RELAPSE
Family and friends should be familiar with signs of “relapse”— where the ill person may suffer a period of deterioration due to a flare up of symptoms. It helps to know that signs of impending relapse are quite specific for some people. Signs vary from person to person, but the most common are:
• Increased withdrawal from activities
• Deterioration of basic personal care.
5. MANAGING FROM DAY TO DAY Ensure that there is follow-up care and treatment. This means taking medication if prescribed, keeping ongoing appointments for cognitive testing, psychosocial education and rehabilitation if necessary.
Try to provide a structured and predictable environment. The recovering patient will have problems with sensory overload. To reduce stress, keep Early Psychosis: What Families and Friends Need to Know — routines simple, and allow the person time alone each day. Plan non- stressful, low-key regular daily activities, and keep "big events" to a minimum. Be consistent. All family members and friends including the patient should agree on a plan of action and follow it. If recurring concerns are handled in a predictable manner, it reduces confusion and stress for the person who has been ill. Set limits on how much abnormal behaviour is acceptable, and consistently apply the consequences. Some relearning may be necessary. Maintain peace and calm at home. Thought disorder can be an ongoing problem for some people. It generally helps to keep voice levels down. When the person is participating in discussions, try to speak one at a time, and at a reasonably moderated pace. Shorter sentences can also help. Above all, avoid arguing about delusions (false beliefs). Be positive and supportive. Being positive instead of critical will help the person much more in the long run. People who have experienced psychosis need frequent encouragement, since self-esteem is often very fragile. Encourage all positive efforts. Be sure to express appreciation for a job even half-done, because the person’s confidence, initiative, patience, and memory have often been undermined. Help the person set realistic goals. Some people who have experienced psychosis may need lots of encouragement to regain some of their former skills and interests. They may also want to try new things, but should work up to them gradually and not take on too much at a time. The point is to avoid excessive stress, so goals should be reasonable, and nagging should be avoided. Gradually increase independence. As participation in a variety of tasks, recreational and social activities increases, so should independence. It is important for young people to continue with social activities, education and employment if possible. If school or work are not possible, try to keep up social and recreation activities and help the person plan to use their time constructively. Learn how to cope with stress together. Anticipate the ups and downs of life and try to prepare accordingly. The person who has been ill needs to learn to deal with stress in an acceptable manner. Your positive role-modelling can help. Sometimes just recognizing in advance something that might be stressful and talking about it can also help. Encourage the person to try something new. Offer help selecting an appropriate activity. If requested, go along the first time for moral support. Early Psychosis: What Families and Friends Need to Know — 6. LOOK AFTER YOURSELF AND OTHER FAMILY MEMBERS Be good to yourself. SELF-CARE is very important—even crucial—to every individual, and ultimately helps the functioning of the entire family. Let go of any outdated notions of guilt and shame. Remember—poor parenting or poor communication does not cause psychosis, nor is it the result of any personal failure by the individual. Value your own privacy. Keep up your own friendships and outside interests, and try to lead as orderly a life as possible. Do not neglect other family members. Brothers and sisters often secretly share the same guilt and fear as their parents. They may worry that they might also experience psychosis. When their concerns are neglected, they may feel jealous or resentful of the ill person. Siblings of people who have experienced psychosis need special attention and support to deal with these issues. GET SUPPORT. Learn From Others Who Have Similar Experience Check for resources in your community. If someone in your family experiences a psychosis — it helps to know you are not alone. Support groups are good for sharing experiences with others. You will also get useful advice about your local mental health services from those who have “been there.” Knowing where to go and who to see—and how to avoid wasting precious time and energy—can make a world of difference when trying to find good treatment. Continuity of care may also be important. Ultimately, this could involve ongoing medical, financial, housing, education, employment and social support systems. All these services may be crucial for recovery—yet they tend to be very poorly coordinated. Support groups can help you start putting the pieces of this puzzle together. They can also advocate for better, more integrated case management for people with psychosis and their families.
√ Call the Mental Health clinic in your community. Ask about their family education and support programs
√ Look for family support organizations in your region
√ Join the BC Schizophrenia Society. Call (604) 270-7841
Early Psychosis: What Families and Friends Need to Know — Getting Treatment “With early diagnosis, speedy initiation of treatment, careful medication monitoring, regular follow-up, proper education, residential, vocational and rehab support systems in place, long-term outcomes are quite favourable.” “HOW CAN WE FIND APPROPRIATE MEDICAL HELP?” Many families are shocked when they try to find a doctor for a young person with psychosis. It seems that some doctors have little or no interest in this area. There is no easy solution to this problem. First of all—psychosis can resemble other illnesses, so assessment and treatment must involve well-qualified people. Appropriate assessment, medical care and prescription medications will all likely be needed. As prominent psychiatrist Fuller Torrey says, “There is no avoiding the doctor- finding issue.” One way to start is to ask someone in the medical profession whom they would go to if someone in their family showed signs of psychosis. If the young person is still in school, a high school counsellor may be able to assist with an appropriate referral. Another way is by talking with other families who have been through the mental health system. They will often be able to put you in touch with the best resources in your community, and save you a lot of time and frustration. Sharing this type of information is one of the most valuable assets of your local Schizophrenia Society, and is an important reason to join the organization. Besides finding someone who is medically competent, you need to find someone who works well with other members of the treatment team, and will help both patient and family understand and participate in the treatment plan. Early Psychosis: What Families and Friends Need to Know —
Psychologists, psychiatric nurses, social workers, case managers, rehab specialists, counsellors and others are all part of the therapeutic process. Doctors who are reluctant to work as team members are not good doctors for treating early psychosis, no matter how skilled they may be in psycho-pharmacology. Specifically, you need to find a doctor who:
• Believes psychosis must be thoroughly assessed • Takes a detailed history • Screens for problems that may be related to other possible illnesses • Is knowledgeable about antipsychotic medications • Follows up thoroughly • Adjusts the course of treatment when necessary • Reviews medications regularly • Is interested in the patient’s entire welfare, and makes appropriate
referrals for aftercare psychosocial education, rehab, housing,
• Explains clearly what is going on • Involves the family in the treatment process
In order to get enough information to make informed decisions, you may have to ask the doctor some direct questions: What do you think causes psychosis? What has been your experience with newer medications? How important is psychotherapy in treating psychosis? What about rehabilitation? If you are uneasy or lack confidence in the medical advice you receive, remember—you do have the right to another opinion from other doctors, even if from another city. “HOW IS PSYCHOSIS TREATED?” Medication Patients with psychosis will likely be given medication to
alleviate symptoms. It is not possible to know in advance which medication will work best for an individual. Several medication adjustments may be required. This period of trial and error can be difficult for everyone involved. Some medications may have unpleasant side effects—dry mouth, drowsiness, stiffness, or restlessness. However, the newer generation of medications are generally much better tolerated than the old ones, and are generally used as “first line” treatment for young people.
Early Psychosis: What Families and Friends Need to Know — Education Patients, families and friends must learn all they can about
psychosis. They should also be directly included in planning the treatment program. Families should find out what assistance is available in their community — including day programs, extra help in school, self-help groups, rehab, work and recreation programs. It is most important for the patient and the family to understand the facts about psychosis, to have every hope for recovery, and to learn how best to manage residual symptoms if necessary. Family Counselling Since the patient and the family are often under
enormous emotional strain, counselling should be available from professionals who understand the illness.
Hospitalization and Regular Follow-up If a person has an acute episode
of psychosis, they will likely require hospitalization. This allows the patient to be observed, assessed, and, if necessary, started on medication under the supervision of trained staff. The purpose of hospitalization is proper medical care and protection. Once the patient is stabilized and discharged from hospital, regular follow-up care will reduce the chances of relapse.
Residential and Rehabilitation Programs It is very important to have
plans for education, social activities, recreational, vocational and residential opportunities. Used as part of the treatment plan, they can result in improved outcomes for everyone. Self-Help Groups Families can be very effective in supporting each other
and in advocating for much-needed research, public education, and community-based programs. People who have experienced psychosis can also provide consultation and advocacy in these areas, as well as offering peer support to other individuals who have had psychosis.
Nutrition, Rest and Exercise Recovery from psychosis, as with any
illness, requires patience. It is aided by a well-balanced diet, adequate sleep, and regular exercise. However, side effects from medication may interfere with proper eating, sleeping, and exercise habits. There can be appetite loss, lack of motivation, and withdrawal from normal daily activity. Someone who has been very ill may still forget to eat, or may become suspicious about food, so supervision of daily routines is sometimes required. If you are a family member or friend who is trying to help—be patient. Above all, don’t take seeming carelessness or disinterest personally.
Early Psychosis: What Families and Friends Need to Know — Recovery
Myth: Rehabilitation can be provided only after stabilization. Reality: Rehabilitation should begin on Day One.
Dr. Courtenay Harding, University of Colorado School of Medicine
Some of the most recent and hopeful news in psychosis research is emerging from studies in the field of psychosocial “rehab.” New studies challenge several long-held myths in psychiatry about the inability of people with psychosis to recover. It now appears that such myths, by maintaining an overall pessimism about outcomes, may significantly reduce patients’ opportunities for improvement and/or recovery. After three decades of empirical study, it is now clear that good rehabilitation programs are an important part of treatment strategy. Furthermore, the importance of family input for treatment and the benefits of appropriate relations between clinicians and families are now well established. Families need and want education, information, coping and communication skills, emotional support, and to be treated as collaborators. For this reason, knowledgeable clinicians will make a special effort to solicit involvement of family members. Sometimes a clinician may have to make a special effort to entice the family into collaboration. However, once a relationship is established, clinician, patient and family can work together to identify needs and appropriate interventions. Everyone should be able to have realistic yet optimistic expectations about improvement and possible recovery. Studies show that families and friends who are supportive, non-judgmental, and, most especially, non-critical—can do much to help recovery. On the other hand, patients who are around chaotic or volatile family members usually have a more difficult time. Since we now know this, it is important for those who are close to the ill person to assess their coping skills. They need to know if the ill person has some degree of cognitive impairment. If so, treating professionals need teach them some basic, simple communication techniques and strategies to prevent everyday misunderstandings, frustration and stress. Health professionals should help families try to anticipate and adapt to the ups and downs of the illness. Calm assurance, assistance, and support from family members and others who care can help the individual towards recovery.
Early Psychosis: What Families and Friends Need to Know — FAQ’s —“Frequently Asked Questions” 1. Q. What are my chances of developing psychosis? A. Approximately 3% of people worldwide will experience an episode of psychosis in their lifetime; about 1% will develop schizophrenia. Since schizophrenia, bipolar disorder and clinical depression tend to run in families, your chances may be higher if someone in your family has one of these illnesses. For example, the rates for schizophrenia in family members where relatives have the illness is as follows: - If one parent or a brother or sister is ill, the risk factor is about 7-9% - If both your parents are ill, your chances are about 37% - If a nonidentical twin is ill, your chances are 10-15% - If an identical twin is ill, your chances are 35-50% - If your grandparent, aunt or uncle is ill, your chances are about 2-3% - Schizophrenia does not discriminate between the sexes. Young men and women are equally at risk for developing the illness. 2. Q.Can children develop psychosis? A. Yes. In rare instances, children as young as five have been diagnosed with psychosis. Most people do not show recognizable symptoms until adolescence or young adulthood.
3. Q. How can I tell if I have psychosis before it becomes serious? A. If you think you have symptoms of psychosis, you should talk to a doctor who has experience treating the illness. This is very important since early diagnosis and treatment means a better long-term outcome. 4. Q. My friend had an episode of psychosis. How can I help? A. We all need friends who stick with us through good times and bad. People who have experienced psychosis will value your friendship. They may be discriminated against by people who are ignorant about brain illnesses. Many individuals who develop psychosis have high IQ’s. Unless someone is experiencing symptoms of psychosis, there will be nothing especially unusual about their behaviour.
You can help by trying to understand your friend’s experience, and by educating others when the opportunity arises. Let them know the facts. Also, if you can, get to know your friend’s family. They might help you understand how your friend may sometimes be overwhelmed or discouraged because of persistent or recurring symptoms. Once you know
Early Psychosis: What Families and Friends Need to Know —
this, you can help by just being supportive and encouraging during these rough times. If you’re planning social activities with your friend, it helps to remember:
▪ People who have experienced psychosis should keep a fairly regular
schedule, and get adequate sleep and rest.
▪ Because there may be some residual thought disorder, term papers
and studying for exams can’t be left until the last minute
▪ Using street drugs is very dangerous because they can trigger a
5. Q. Do street drugs ever causepsychosis? A. Yes. Certain street drugs can cause psychosis but most psychosis is not drug-induced. People who take street drugs sometimes have psychotic symptoms, so people who experience psychosis are sometimes accused of being “high” on drugs. On the other hand, a person with untreated psychotic symptoms may also become involved in substance abuse, where having such symptoms in the setting of getting high might be seen as “normal.” 6. Q. Does a history of psychosis in my family mean there is a greater risk of having a psychotic episode if I use street drugs? A. Yes. Evidence indicates that if someone has a predisposing genetic factor, drugs like cannabis (marijuana, hash, hash oil, etc.) or cocaine may trigger an episode of psychosis. This may or may not clear up when the drug use stops. If your family has a history of psychosis, extra caution would be wise.
Street drugs can be risky for anyone, but for people who have experienced psychosis, they are particularly dangerous. As mentioned earlier, certain drugs can cause relapses and make the illness worse.
All street drugs should be avoided, including:
▪ PCP (angel dust) ▪ Cocaine/crack ▪ LSD ▪ Amphetamines ▪ Marijuana and other cannabis products ▪ Ecstasy
Early Psychosis: What Families and Friends Need to Know — 7. Q. What about alcohol, coffee and tobacco? A.Moderate use of alcohol (one or two glasses of wine or beer) doesn’t seem to trigger psychotic symptoms, but heavy use certainly can.
People on medication should be especially careful. Since alcohol is a depressant, it can be life-threatening when combined with medications like tranquilizers (clonazapam, Rivotril, Ativan, Valium, alprazolam, etc.) Each multiplies the effect of the other— often with disastrous results. The following have also been shown to trigger symptoms of psychosis:
▪ Large amounts of nicotine and/or caffeine ▪ Cold medications and nasal decongestants.
Early Psychosis: What Families and Friends Need to Know — Education and Psychosis “I’m a Teacher—What Can I Do?” “Professionals . must help people set realistic goals. I would entreat them not to be devastated by our illness and to transmit a hopeless attitude to us. I urge them never to lose hope; for we will not strive if we believe the effort is futile.”
— Esso Leete, person who has had schizophrenia for 20 years
1. Arm yourself with the facts
Early onset psychosis is very common. It strikes in the mid to late teens and early twenties. You need to be aware that:
• Early intervention and early use of new medications lead to better medical outcomes for the individual
• The earlier someone with psychosis is diagnosed and stabilized on
treatment, the better the long-term prognosis for their illness
• Teen suicide is a growing problem—and teens with psychosis have
2. Bring psychosis into the open
• Discuss the physiology of the brain and the facts about psychosis in
• An good educational resource such as Reaching Out: The Importance of Getting Help Early (see pages 35 and 36) helps to dispel myths and reduce the injustice and prejudice associated with the illness.
• Provide information on precipitating factors, such as drug abuse.
3. Be alert to early warning signs of psychosis
• Young people are sometimes apathetic, have mood swings, or
experience declines in athletic or academic performance. But if these things persist, you should talk to the family and help the student receive an assessment.
The Schizophrenia Society’s “Reaching Out” (2001) teaching resource helps students learn about brain function and mental illness. The resource also stresses the importance of getting help early. See page 36 for details. Early Psychosis: What Families and Friends Need to Know — 4. If you have a student in your class who has a psychosis:
• Learn as much as you can about the illness so you can understand
the very real difficulties the person is experiencing
• Reduce stress by going slowly when introducing new situations
• Help them set realistic goals for academic achievement and extra-
• Establish regular meetings with the family for feedback on health and
progress. It may be necessary to modify objectives, curriculum content, teaching methodology, evaluation formats, etc.
• Encourage other students to be kind and to extend their friendship.
Some may wish to act as peer supports if symptoms recur and some catch-up help is needed.
5. Teachers and counsellors can also help raise awareness by:
• Holding information sessions about early psychosis at parents’
• Setting up displays for special occasions (such as Mental Illness
Awareness Week) in the school library or counselling office
• Ordering up-to-date resource materials for your library, finding
current information on the internet, and discarding out-of-date literature.
In-class Partnership Education presentations are an invaluable aid for helping
students understand the nature and prevalence of mental illness. The Partnership program brings together three individuals who work as a team to present the facts about psychosis. One person has a psychiatric diagnosis, one is a family member, and one is a mental health professional. They come into your classroom together, each to tell their personal story.
PartnershipEducation presentations elicit immediate and thoughtful class
participation. Mental illness is demystified. Students’ questions are answered directly by people with first-hand knowledge and experience. The
Partnership Education program helps fight ignorance, prejudice, dusty old
Hollywood myths, and hurtful stereotypes. It also provides vital facts about the physical nature of psychosis, and helps many individual students whose family members have suffered from mental illness.
Early Psychosis: What Families and Friends Need to Know — Myths and Misconceptions “One thing I found really hard about my illness was the stigma.
Shawna, a young person who experienced psychosis
Society’s knowledge of early psychosis lags way behind the facts. People with psychosis can be victims of this general ignorance, especially if they do not receive treatment and education about their illness. Much more public education and awareness is needed. What is the biggest problem for people who have experienced psychosis? Most say it’s that others hesitate to accept them. Once they recover and no longer have symptoms, they may still have difficulties with school, friends, housing, and work. Old friends and even some family members may be uncomfortable in their presence. No wonder so many people who have experienced psychosis feel they don’t belong; that they are “different” that they are not respected or valued. Such
widespread, hurtful ignorance can lead to terrible social isolation and loneliness. It can become the most disabling feature of psychosis. Educating patients, families and friends helps give everyone the tools they need to deal with the illness in a realistic and positive manner. Meanwhile, it is also vital that we continue to increase public awareness. Knowledge about the importance of early psychosis intervention is crucial to improving outcomes and to conquering ignorance. Better public health education programs can help do away with old myths and misunderstandings. Giving young patients the necessary supports to recover and live with dignity in their communities helps overcome the old myths and stereotypes.
Early Psychosis: What Families and Friends Need to Know — BC Schizophrenia Society (BCSS) EDUCATION PROGRAMS AND RESOURCES * Partnership Education Partnership presentations consists of a team of three guest speakers a person with a psychiatric diagnosis, a family member, and a
mental health professional. Each guest describes their own personal experience with mental illness. Based on a personal storytelling model, Partnership education is a unique and powerful tool that helps people in the community understand the nature and prevalence of chronic and severe mental illness. BCSS/NAMI Family-to-Family Education Program A 12-week course for families of people with severe and persistent mental illness. It focuses on three major psychiatric illnesses (schizophrenia, bipolar disorder and major depression), emphasizing clinical treatment and teaching the knowledge and skills that family members need to cope more effectively. The course is taught by trained family members in a team-teaching approach. Partnership Puppeteer Program Puppet show for Grade 4/5 students that provides accurate information and helps dispel myths and misunderstandings about mental illness. The puppet show is presented by consumers and family members using brightly coloured puppets. The story, “Brother Where Are You?” is about a young girl who shares her concerns with her friends about her brother who has schizophrenia. BRIDGES Program BRIDGES is based on the belief that people with mental illness can recover and find a new and valued sense of self and purpose. Based on the BCSS/NAMI Family-to-Family education program, BRIDGES is a 14-week course founded on two principles: (i) learning about facts; and (ii) learning about feelings. BRIDGES was developed by more than 100 consumerspeople who shared their personal
experience and knowledge about their illness. It is taught “by consumers for consumers”. Learning from each other helps empower people by providing them with tools to build their own bridges of recovery.
Early Psychosis: What Families and Friends Need to Know — “Kids in Control” Support Group Program Designed to provide information, education and support to children eight to thirteen years of age who have a parent with a serious mental illness. Because these children face unique challenges and are at risk for social maladjustment and mental illness, they are an appropriate group for this primary prevention program. “Reaching Out” The Need For Early Treatment * High School & Community Video & Resource Kit This important new tool developed for high schools consists of a 22-minute video, teacher’s guide, lesson plans and student materials. Heightens awareness among students, their teachers, counsellors and other “gatekeepers” about the early signs and symptoms of psychosis, emphasizing the importance of early intervention and treatment. “Reaching Out” Physician’s Version * Early Psychosis Identification for Physicians and Mental Health Professionals 12-minute video developed in conjunction with the Department of Psychiatry at the University of British Columbia for BC’s province-wide Early Psychosis Initiative (EPI) program. Early Psychosis: What Families and Friends Need to Know * 37-page booklet emphasizing the importance of early medical assessment and treatment to improve outcomes. Includes information on different types of psychosis, early warning signs, treatment, rehab, recovery, and how to find timely medical help. Basic Facts About Schizophrenia 44-page booklet introducing basic information about schizophrenia how common the illness is, symptoms, medications, how to find
help, research, myths, plus tips for families, friends and teachers.
1. To order Early Psychosis Education Resources, see page 37
Early Psychosis: What Families and Friends Need to Know — BC SCHIZOPHRENIA SOCIETY (BCSS) PROVINCIAL OFFICE 201 – 6011 Westminster Hwy Richmond, B.C. V7C 4V4 Tel (604) 270-7841 Fax (604) 270-9861 E-mail: [email protected] Web site: Support
Support groups throughout the province for families and friends of people with schizophrenia and other serious mental illness
EducationFamily Education and Partnership programs for increasing public
awareness and understanding about mental illness
Advocacy Advocating for improved legislation and better services for people ResearchActive fundraising for research into the causes and treatment of schizophrenia and other serious mental illness BRANCHES
To reach the BCSS branch nearest you, call your Regional Family Coordinator, check your local telephone directory, or contact the BCCS Provincial Office (604) 270-7841 www.bcss.org Abbotsford
Early Psychosis: What Families and Friends Need to Know — British Columbia Schizophrenia Society (BCSS) Family and Program Coordinators
BCSS Regional and Program Coordinators help coordinate services, support and education for family members of people with first episode psychosis, schizophrenia, bipolar disorder, depression and other serious brain disorders. Vancouver/ Richmond Northwest Region Burnaby Region Northern Interior/Cariboo Simon Fraser Region Bulkley Valley South Fraser Peace Liard North Julie Kornelsen Sea to Sky Corridor Peace Liard South Sunshine Coast Children of the Mentally Ill Powell River and Area Lin Johnson BRIDGES Coordinator Okanagan Region Thompson Region Respite Services Early Psychosis: What Families and Friends Need to Know — Help for Families Outside British Columbia
PRINCE EDWARD ISLAND SASKATCHEWAN MANITOBA NEW BRUNSWICK Schizophrenia Society of New Brunswick
Toll free 1-800-323-0474 (in Que. only) E-mail: [email protected]NEWFOUNDLAND WORLD SCHIZOPHRENIA NOVA SCOTIA FELLOWSHIP
Toll Free: 1-800-465-2601 (in N.S. only)
IN EUROPE EUFAMI – Headquartered in Belgium.
Affiliated with 16 mental illness support
SCHIZOPHRENIA SOCIETY OF CANADA IN THE UNITED STATES NAMI (National Alliance for the Mentally
Ill) at 1-800-950-NAMI. Volunteers staff
this toll-free Helpline answering questions
and providing referrals to local affiliate
support groups and information services.
Glossary: Understanding the Language of Mental Illness
If you have a relative, friend, or student with psychosis, you may find medical professionals and others using words you are not familiar with. This is a short glossary of some of the most commonly used terms.
Affective Disorders or Mood Disorders Mental il ness characterized by greatly exaggerated emotional reactions and mood swings from high elation to deep depression. Commonly used terms are bipolar disorder (formerly called manic depression) and depression—although some people experience only mania and others only depression. These extreme mood changes are unrelated to changes in the person's environment. Delusion A fixed belief that has no basis in reality. People suffering from this type of thought disorder are often convinced they are famous people, are being persecuted, or are capable of extraordinary accomplishments. Diagnosis Classification of a disease by studying its signs and symptoms. Schizophrenia is one of many possible diagnostic categories used in psychiatry. Electroconvulsive Therapy (ECT) Used primarily for patients suffering from extreme depression for long periods, who are suicidal, and who do not respond to medication or to changes in circumstances. Hallucination An abnormal experience in perception. Seeing, hearing, smelling, tasting or feeling things that are not there. Involuntary Admission The process of entering a hospital is called admission. Voluntary admission means the patient requests treatment, and is free to leave the hospital whenever he or she wishes. People who are very ill may be admitted to a mental health facility against their will, or involuntarily. There are two ways this can occur:
• Under medical admission certificate or renewal certificate
• Under special court order when the person has been charged or convicted
with a criminal offence. In this case, they may be held in a forensic facility.
In British Columbia, before someone can be admitted involuntarily, a physician must certify that the person is:
• Suffering from a mental disorder and requiring care, protection and medical
• Unable to ful y understand and make an informed decision regarding
• Likely to cause harm to self or others, or to suffer substantial mental or
physical deterioration if not hospitalized.
Early Psychosis: What Families and Friends Need to Know 31
Medications In psychiatry, medication is usually prescribed in either pill or injectable form. Several different types of medications may be used, depending on the diagnosis. Ask your doctor or pharmacist to explain the names, dosages, and functions of all medications, and to separate generic names from brand names in order to reduce confusion. 1) Antipsychotics: Brand Names—Modecate, Largactil, Stelazine, Haldol, Fluanxol, Pipartil, Clozaril, Risperdal, Zyprexa. Seroquel. Generic Names— fluphenazine, chlorpromazine, trifluoperazine, haloperidol, flupenthixol, pipotiazine, clozapine, risperidone, olanzapine, quetiapine. These reduce agitation, diminish hallucinations and destructive behaviour, and may bring about some correction of other thought disorders. Side effects include changes in the central nervous system affecting speech and movement, and reactions affecting the blood, skin, liver and eyes. Periodic monitoring of blood and liver functions is advisable. 2) Antidepressants: Relatively slow-acting drugs—but if no improvement is experienced after three weeks, they may not be effective at all. Some side effects may occur, but these are not as severe as side effects of antipsychotics. 3) Mood Normalizers: e.g., Lithium, Carbamazepine, Valproate. Used in manic and manic-depressive states to help stabilize wide mood swings that are part of the condition. Regular blood checks are necessary to ensure proper medication levels. There may be some side effects such as thirst and burning sensations. 4) Tranquilizers: Valium, Librium, Ativan, Xanax, Rivotril. Generally referred to as Benzodiazepines. These medications can help calm agitation and anxiety. 5) Side Effect Medications: Also called anticholinergics. Brand Names— Cogentin, Kemadrin. Generic Names—benzotropine, procyclidine.
Mental Health Describes an appropriate balance between the individual, his or her social group, and the larger environment. These three components combine to promote psychological and social harmony, a sense of wel -being, self-actualization, and environmental mastery. Mental Illness/Mental Disorder Physiological abnormality and/or biochemical irregularity in the brain causing substantial disorder of thought, mood, perception, orientation, or memory—grossly impairing judgement, behaviour, capacity to reason, or ability to meet the ordinary demands of life. Mental Health Act Provincial legislation for the medical care and protection of people who have a mental il ness. The Mental Health Act also ensures the rights of patients who are involuntarily admitted to hospital, and describes advocacy and review procedures. Paranoia A tendency toward unwarranted suspicions of people and situations. People with paranoia may think others are ridiculing them or plotting against them. Paranoia fal s within the category of delusional thinking. Early Psychosis: What Families and Friends Need to Know — Psychosis Hal ucinations, delusions, and loss of contact with reality. Schizophrenia Severe and sometimes chronic brain disease. Common symptoms—personality changes, withdrawal, severe thought and speech disturbances, hallucinations, delusions, bizarre behaviour. Side Effects Side effects occur when there is drug reaction that goes beyond or is unrelated to the drug’s therapeutic effect. Some side effects are tolerable, but some are so disturbing that the medication must be stopped. Less severe side effects include dry mouth, restlessness, stiffness, and constipation. More severe side effects include blurred vision, excess salivation, body tremors, nervousness, sleeplessness, tardive dyskinesia, and blood disorders. Some drugs are available to control side effects. Learning to recognize side effects is important because they are sometimes confused with symptoms of the illness. A doctor, pharmacist, or mental health professional can explain the difference between symptoms of the il ness and side effects due to medication. Treatment Refers to remedies or therapies designed to cure an illness or relieve symptoms. In psychiatry, treatment is often a combination of medication, education about the illness, counselling (advice), and recommended activities. Together, these make up the individual patient’s treatment plan. Early Psychosis: What Families and Friends Need to Know —
THE MENTAL HEALTH ACT = THE RIGHT TO TREATMENT AND CARE
• Due to a chemical imbalance that affects the brain, many people who
become acutely ill with psychosis are unable to recognize their illness. That means they are unable to voluntarily exercise their right to available treatment—because of the very nature of their disability. The British Columbia Mental Health Act is about the care and protection of our citizens who are suffering from such illnesses.
• Early treatment and stabilization on medication greatly improves the hope
of recovery for people with psychosis. Many people can now, with timely and adequate treatment and support, recover and live satisfactory lives in the community.
• Involuntary hospitalization of people who are too ill to care for themselves
should never be falsely equated with incarceration in the criminal justice system. To do so not only adds to prejudice about people with mental illness—it also deprives them of their fundamental right to proper medical treatment and care. Unfortunately, such confusion is common. As a result, there are many people with severe and chronic brain diseases such as schizophrenia who have “fallen through the cracks” of the system and are abandoned, because they are not well enough to seek treatment for themselves.
• It is a scandal that people who are ill should literally die in our streets from
neglect when effective treatment is available. Furthermore, suicide rates among this population are alarmingly high. For example, 50% of all young people with psychosis will attempt suicide—and 10 to 13% will succeed.
• Family members may sometimes have to be politely persistent in
advocating for the essential right to treatment for their ill relative under the Mental Health Act. Understanding that their loved one’s health and future are at stake can make all the difference.
The purpose of the BC Mental Health Act is to help people who require medical treatment receive the help they need and deserve so that they can regain their health. Early Psychosis: What Families and Friends Need to Know — EARLY PSYCHOSIS Reaching Out The Importance of Early Treatment
“Outstanding educational resource to teach senior high school students about mental illness.” Connie Easton, Vice President – BC School Counsellors Association “Accurate information, good emphasis on early treatment useful to
professionals dealing with young people.”Dr. Bill MacEwan, Medical Director – Early Psychosis Intervention Program • High School Curriculum Resource Kit
This important new tool consists of • 22-minute video • Teacher/ Facilitator’s Guide • Lesson Plans, Overheads • Student Materials
The “Reaching Out” resource is designed to heighten awareness of the early signs and symptoms of psychosis, and the importance of early intervention and treatment. A complete, stand-alone resource that can be used by instructors who have little or no previous knowledge of schizophrenia or other serious mental illnesses. Cost $150.00
• “Reaching Out” Video 22 minutes
Video emphasizes the importance of getting help early for someone showing early psychosis symptoms. Dramatic storyline intercut with interviews of people with schizophrenia talking about their illness. (This video is included in complete “Reaching Out” curriculum resource kit, above.) Cost $ 25.00
• “Reaching Out” Video 12 minutes Early Psychosis Identification for Physicians and Mental Health Professionals. Developed by the BC Schizophrenia Society in conjunction with the University of British Columbia’s Department of Psychiatry to help enhance clinical skills. People with schizophrenia talk about their personal experience; commentary by five noted psychiatrists.
• Booklet - Early Psychosis: What Families and Friends Need to Know
36-page detailed booklet includes information on different types of psychosis, early warning signs, treatment, how to find appropriate medical help, education, rehab and recovery. Cost $3.50
Early Psychosis: What Families and Friends Need to Know — RESOURCE/VIDEO ORDER FORM “Reaching Out: The Importance of Early Treatment”
(Order prices include all taxes, shipping & handling)
• “Reaching Out” Complete Curriculum Resource Kit (Includes 22-minute video, with 80-page instructor’s guide) Cost _____ = $__________ • “Reaching Out” 22-minute Video only Cost
• “Reaching Out” 12-minute Video, Physicians’ Version Cost $ 20.00
• Booklet - Early Psychosis: What Families and Friends Need to KnowCost $ 3.50 TOTAL COST: _ __________
CREDIT CARD: VISA MasterCard Expires___________ Credit Card #______________________________________________ Name____________________________________________________ Address__________________________________________________ City____________________Code___________Country____________ Signature_________________________________________________ Credit card orders may be faxed to (604) 270-9861 Cheques are payable to BC Schizophrenia Society Mail to : BCSS Provincial Office #201-6011 Westminster Richmond, BC V7C 4V4 (Canada) Early Psychosis: What Families and Friends Need to Know —
INFORMATION Glossary yrassolG :NOITAMROFNI yrassolG :NOITAMROFNI Glossary of terms Here are some words that you may come across when reading about diabetes. This is for your information only, and it is not necessary to know what all the words mean. Acute - describes something that happens suddenly and for a short time. Opposite of chronic .1 Adipocytes - fat
Bruno S., Vierling G.M., Esteban R. et al.; Efficacy and Safety of Boceprevir plus Peginterferon-Ribavirin in Patients with HCV G1 Infection and Advanced Fibrosis/Cirrhosis1 SPRINT-2: disegno dello studio2 Metodi : studio di superiorità di fase 3, multicentrico, internazionale, randomizzato, in doppio cieco, controllato con placebo, condotto su 1097 soggetti adulti affetti da