Schizophrenia: Understanding The Disease  ___________________________________________________ ______________   Janssen Pharmaceutica  ___________________________________________________ ______________  Contents  * You Don't Have To Go It Alone     + Schizophreni a is a medical illness. Period     + What schizo phrenia is not  * What Is Schizophrenia?     + Where does s chizophrenia begin?     + The onset a nd early symptoms  * What Are The Symptoms?  * Negative Symptoms (the more inward  signs)  * Positive Symptoms (the outward or more visible signs)  * Can Schizophrenia Be Cured?  * Diagnosing Schizophrenia  * Treating Schizophrenia  * Side Effects  * Psychosocial Therapy And Social Su pport  * The Cost Of Schizophrenia  * The New Treatments  * How To Talk To Your Healthcare Pro fessional About Medication  * Glossary   ___________________________________________________ ______________  You Don't Have To Go It Alone  We know that schizophrenia affects one in every 100 Canadian s - that means that 270,000 people will be diagnosed with this illnes s at some point in their life. Any mental illness makes it difficult for people to cope wit h their emotions, to think clearly, and function in the community. I t can cause them to behave in unusual or inappropriate ways. This booklet is for people with schizophrenia, their familie s, caregivers and anyone who is interested in gaining a basic understanding of the illness. Along with information about t he disease, a new class of treatments available are discussed. They offer new hope for people with schizophrenia and their families. Although this booklet is not a substitute for important disc ussions between a person with schizophrenia, their family, and physi cian, it can be used as a basis for questions and discussion about schizophrenia.  Schizophrenia is a medical illness. Period  Like epilepsy or diabetes, schizophrenia is a medical illnes s - in this case a disease of the brain. It is no one's "fault". Pe ople who suffer from this disease must be seen as genuinely ill.  What schizophrenia is not  There are many misconceptions about mental illness in genera l - and schizophrenia is particularly misunderstood. Most of what pe ople think they know about the disease is wrong. * Schizophrenia is not a multiple or "split" pe rsonality. * Schizophrenia is not caused by bad parenting. There is no evidence to suggest that schizophrenia is ca used by how people have been treated as children or even adults. * Most people with schizophrenia are not violen t or dangerous. Unfortunately, people with this disease have been portra yed in the media and on television as aggressive, dangerous and hom icidal. Studies indicate that with their psychotic symptoms unde r control, these individuals are no more likely to be violent than anyone else. Even when their symptoms are active, very few are violent. * Schizophrenia is not the result of childhood trauma.  ___________________________________________________ ______________  What Is Schizophrenia?  Evidence indicates strongly that schizophrenia is a severe d isturbance in the brain's functioning. It's caused by many factors - in cluding changes in the chemistry of the brain, changes in the struct ure of the brain, and genetic factors. There are billions of nerve cells in the brain. Each nerve c ell has branches that send and receive messages from other nerve cel ls. Neurotransmitters, chemicals released from these branches, c arry the message from the end of one nerve branch to the cell body of  another. In the brain of a person with schizophrenia, something goes wrong in this communication system. Over time, researchers have recognized that two neurotransmi tters, dopamine (dough-pa-meen) and serotonin (se-row-toe-nin) in p articular, have roles to play in schizophrenia. Evidence has accumulate d that suggests dopamine is very important. In the brain afflicted with schizophrenia, it appears as though there is too much of thi s chemical in certain areas of the brain. New evidence shows that abnor malities in serotonin activity also play an important role in the ill ness.  Where does schizophrenia begin?  This disease generally strikes young people for the first ti me in the late teens or early twenties. Some people develop schizophre nia later in life, but this is not typical. It occurs in all races, cu ltures, social classes and both sexes. There are important male-fema le differences in the disease, with schizophrenia generally occ urring earlier in males, and later in females - but this is not a r ule.  The onset and early symptoms  For some people, the illness advances so gradually that they  and their family are not aware for a long time that they are ill. This  is referred to as gradual-onset schizophrenia. A gradual build- up of symptoms may or may not lead to an acute or crisis episode -  a short and intense period that involves delusions (e.g. believing s omeone is trying to harm them), hallucinations (e.g. hearing voices), distorted thinking (e.g. blocked or jumbled thoughts), and an altered sense of self (e.g. alterations in body sensations). In some cases, however, schizophrenia may strike quickly, wi th individuals experiencing dramatic behaviour changes in a mat ter of a few weeks or even days. This is referred to as rapid or sudd en-onset. For these people, an acute episode usually follows. In each case, medical treatment should be sought. A person with schizophre nia may suffer from very few episodes in their life; others have mor e. And some people are able to lead relatively "normal" lives betwe en episodes. Unfortunately, after each acute episode a patient suffers, the chronic symptoms of the disease may increase, making it more and more difficult for the person to function normally. It's imp ortant, therefore, to try to avoid relapses. This can be encouraged by following the prescribed treatment and therapy set up by the  physician and family.  ___________________________________________________ ______________  What Are The Symptoms?  Symptoms of schizophrenia are divided into "positive" and "n egative" categories. This can be confusing. "Positive" are those characteristics that are present, and should be absent. "Neg ative" are those that are absent, and should be present. If you or someone you know suffers from schizophrenia, some or all the following symptoms may be present. The expression of these s ymptoms varies greatly from one individual to another. No one sympto m is common to all people.  Negative Symptoms  Blunted Affect Emotional withdrawal Poor rapport Passive/apathetic/social withdrawal Difficulty in abstract thinking Lack of spontaneity Stereotyped thinking  Positive Symptoms  Delusions Hallucinations Thought disorders Excitement Grandiosity Suspiciousness/persecution Hostility  ___________________________________________________ ______________  Negative Symptoms (the more inward signs)  Negative symptoms may appear early and can be the initial si gns of schizophrenia. Parents may notice that a child who was once a "go-getter" has become withdrawn from family and friends, ha s lost interest in their usual activities, and has become unfeeling . It can become very difficult for a parent to decide whether something is really wrong with their child because the "adolescent exp erience" that many teenagers go through can involve similar periods o f withdrawal and moodiness. Negative symptoms include the following:  Blunted emotions or blunted affect  For the person with schizophrenia life can be devoid of  feeling. Individuals may say they feel less connected emotionally to what is going on around them, and they may appear less responsive on  an emotional level to their surroundings. Alternatively, the individual may respond with inappropriate  emotions because of the other things going on in his or her head - li ke suddenly breaking out in a fit of laughter for no apparent r eason, or when hearing sad or distressing news.  Emotional withdrawal  Individuals may be detached and uncommunicative. They h ave few interests and few personal relationships.  Poor rapport  In general, the person may avoid eye contact with you. In conversation, they may appear bored, indifferent, lacking in  warmth.  Passive/apathetic  For the individual with schizophrenia, there may be lac k of interest or concern for their surroundings. A lack of energy and driv e makes it difficult for them to complete simple tasks, and they are so metimes able to do little more than sleep or eat. They may appear to  seek or want nothing. To those around them, they may appear lazy and  sluggish. But this is the disease at work. It is as though some centra l drive mechanism that is normally present in most of us is missing.  Social withdrawal  The person with schizophrenia may spend most time alone  because he or she feels safer and calmer; or they are so absorbed in their  own thoughts/senses they lose interest in the feelings and lives  of others.  Difficulty in abstract thinking  Many people with schizophrenia can only think in concre te terms. They are unable to see beyond details to the underlying meaning, unable to move from the specific to the general.  Lack of spontaneity  There may be a hesitancy in the speech or action of ind ividuals. Some people with schizophrenia have decreased spontaneous movemen ts or they may become very unnatural in their movements.  Stereotyped thinking  Persons with schizophrenia can hold very rigid attitude s and beliefs that may seem unreasonable to those around them. Repetitive thoughts may intrude and interfere with their thinking.  Physical symptoms  Physical activity for the individual may slow down. In severe cases, activity may stop to the point where the person sits motionl ess and stares into space for long periods at a time. Individuals ma y be unconcerned with grooming and hygiene and appear untidy. The negative symptoms can prevent patients from being able t o hold a job, or have a normal social life. When the symptoms are sev ere, it may be difficult for them to do even the simple things like grocery shopping, showering or just looking after themselves. It was previously believed that this group of symptoms, the negative symptoms, were side effects of the antipsychotics used to tr eat schizophrenia. These "side effects" are often seen by caregi vers and even people with the illness as the "price you pay" for cont rolling the hallucinations, delusions, and paranoia. But we now know  that this may not be the case. For some people, these symptoms may be part of the disease itself. So, a person with schizophrenia may not be able to help their lack of interest, motivation, and energy.  ___________________________________________________ ______________  Positive Symptoms (the outward or more visible signs)   Delusions  Individuals suffering from delusions truly believe some thing that does not make sense to others around them. Typical delusions incl ude the belief one is being spied on, plotted against, harmed or tor mented. Patients may believe they possess special powers, or they ar e being controlled by other forces. Delusions of a religious nature are common in patients.  Hallucinations  People with schizophrenia may hear, see, smell, taste o r feel something that does not exist. By far the most common are au ditory hallucinations, where the individual hears voices talking ab out them, or to them. The voices often say critical or nasty things to  the person, or command them to do things.  Thought Disorders  A person with schizophrenia may have difficulty organiz ing and processing their thoughts in a way that makes it possible fo r them to communicate clearly with other people. Their speech may appe ar fragmented and incoherent because their thinking is blocked or jumbled. This is sometimes called conceptual disorganization .  Excitement  Individuals with schizophrenia may seem hyperactive and  restless. They may feel widely varying and rapidly changing emotions.  Grandiosity  Individuals may believe they have great wealth, power o r fame. Their reality may be so impaired that they believe they can stop b ullets with their chest or fly over buildings.  Suspiciousness/persecution  People with schizophrenia are guarded and mistrustful o f others. They may believe that they are being watched or followed or suspe ct people are trying to harm them. Individuals may constantly search f or proof of their suspicions.  Hostility  Some people with schizophrenia may exhibit episodes of hostility. They may become abusive, sarcastic and uncooperative with their f amilies and caregivers. While the positive symptoms are more striking and often call  attention to the person with the disease, the negative symptoms are al so important, as they can seriously impair the person's capacit y to function and fit into the world around them.  ___________________________________________________ ______________  Can Schizophrenia Be Cured?  There is no cure, but medication may help reduce many of the  symptoms of the disease, so that rehabilitation, in many cases, is po ssible. Full recovery may occur in a small number of people, but it cannot be predicted. The delusions and hallucinations that grip young adults in the throws of their illness, usually most severe while in th eir 20's and 30's, tend to decline somewhat with age. So by the time a person is in their 40's and 50's, they may experience few of these positive symptoms. Of course, this is not true for everyone with schi zophrenia. Some individuals may still suffer from hallucinations late i n life.  ___________________________________________________ ______________  Diagnosing Schizophrenia  Unfortunately, we have no single blood test, x-ray or brain scan from which we can then say with certainty: "Yes, that is schizoph renia." To reach a diagnosis of the disease, other possible causes must  be ruled out. For example, the use of street drugs, like cocaine or L SD, can cause hallucinations and delusions. Other physical illnesses  can also present symptoms like schizophrenia, such as epilepsy, brain  tumors and thyroid disturbances. Since there is nothing we can measure, no medical test we ca n perform to help define schizophrenia, we are left only with the symp toms of the disease. Because of this, persons with schizophrenia often acquire di fferent "labels" from healthcare providers, before a clear diagnosis  is made. This can be extremely frustrating for patients and their fam ilies. But this is a difficult disease to diagnose - symptoms may eithe r go unrecognized or not show themselves, until the illness is fa irly advanced. For a doctor to diagnose schizophrenia, the symptoms must be  present for at least six months. That is why the most important information is a detailed pat ient history. The diagnosis is based on the symptoms - what the p erson says, what the family can provide about the person's behavio ur, and what the doctor observes.  ___________________________________________________ ______________  Treating Schizophrenia  Drugs are the cornerstone of treatment for schizophrenia, ju st as they are the most important treatment for many physical diseases. They are not a cure, but are used to help control the sympto ms of the disease. Along with medication, social therapy and rehabilit ation are very important tools in the treatment of this disease. Depending on the severity of the symptoms and the stage of t he illness, the individual with schizophrenia may have to be tr eated in the hospital, especially if acutely ill. Other individuals a re able to manage their disease outside the hospital with regular visit s to their doctor, and other support staff. The family is very important in treatment of individuals wit h schizophrenia. Family counseling is often recommended to und erstand and manage problems associated with the disease. Education i s extremely important. Persons with schizophrenia and caregive rs should learn all they can about the treatments and therapies offere d, to be able to take an active role in the management of the disease .  Medication  Medications called antipsychotics (or neuroleptics), de veloped in the 1950's, have proven to be one of the most important medical advances of the century. As a result, people living with schizophreni a no longer have to be hospitalized for years. Many are able to l ive in the community. There are well over 30 different antipsychotics available in  North America. Although antipsychotics are the main drugs used in the treatment of schizophrenia, other drugs are often prescribed  to treat other symptoms like anxiety, and sleeping difficulties that frequently afflict those with the disease. In addition, the side effect s associated with conventional antipsychotics often make it ne cessary for people to take other medications to lessen them. Antipsychotics are not perfect. Although they may help contr ol the positive symptoms of schizophrenia, they have not been prove n to be effective against the debilitating negative symptoms of the disease (e.g. social withdrawal, lack of drive). Some people with schizophrenia do not respond to these drugs, and the side ef fects may contribute to people not taking their medication (noncomplia nce). Without medication, one of the critical steps in the treatme nt of schizophrenia is missing - and relapses are more likely for these individuals. And remember, with each relapse is the chance t hat chronic symptoms become more severe, making treatment even m ore difficult.  ___________________________________________________ ______________  Side Effects  For some individuals, the side effects of their medications can cause many problems. It is the group of side effects known as extr apyramidal symptoms (EPS) that are the most debilitating. Uncontrollabl e restlessness, muscle stiffness, tremors and involuntary move ments characterize these side effects. These people may further is olate themselves from family and friends because they are embarras sed by these side effects, and are unable to control them. They may  decide to stop their medication. Family members may think that extrapy ramidal symptoms are part of the disease itself. That is why it is important for individuals and families to monitor drug doses regularly, and to know and understand the side ef fects of particular antipsychotics.  ___________________________________________________ ______________  Psychosocial Therapy And Social Support  Psychotherapy and rehabilitation go hand in hand with the us e of medication in the treatment of schizophrenia. Especially whe n the acute phase of the illness is over, many people need help to  rebuild their lives so that they can make the best use of their capa bilities - enabling them to work, and build personal and social relatio nships. Supportive therapy is important for individuals living with schizophrenia; to provide them with encouragement, friendshi p and good practical advice on how to manage their day. Teaching of lif e skills - the management of medication, keeping appointments, learning  to socialize again, getting a job - are all part of the rehabil itation process. Tragically, because the disease afflicts many peopl e while in the full bloom of youth, they haven't even had the opportuni ty to learn these basic life skills yet. It's as if they did not g et the chance to fully mature. So rehabilitation can be very challe nging. For most individuals, one big key in the treatment of their disease is acceptance. This is also true of the family that surrounds t he person with schizophrenia. Acknowledgement that the disease is real , that it is not likely to go away, and that it may put limitations on  what the person can do, will make it easier for everyone.  ___________________________________________________ ______________  The Cost Of Schizophrenia  In addition to the emotional strain caused by schizophrenia,  families and people with the disease must deal with additional financ ial costs, primarily due to the loss of employment. Although some peopl e with schizophrenia are able to work, many cannot. The burden on the healthcare system is very real as well. In  fact schizophrenia is the number one mental health care cost. In Canada alone, total costs are well over two billion dollars per yea r. The largest contributor to these costs is hospitalization. Early treatment of the disease is critical. It has been sugg ested that delays in treating the early episodes of schizophrenia with medication may result in a poorer long-term outcome for individuals. At  any time, over 50% of the repeat admissions to hospitals for mental il lness are individuals with schizophrenia. With early treatment, with t he best medications, relapses may be minimized. Costs to people with schizophrenia, their families and the healthcare system can therefore be reduced.  ___________________________________________________ ______________  The New Treatments  Thanks to an ever increasing understanding of the brain's me chanisms, unique treatments have been developed for schizophrenia. The se therapies treat symptoms previously untreated by older medic ations. Conventional antipsychotics are effective against the delusi ons and hallucinations in some individuals with schizophrenia, but t hey do not control the debilitating negative symptoms such as social an d emotional withdrawal. In addition, people taking these drugs  often suffer from side effects known as extrapyramidal symptoms (e .g. uncontrollable shaking, tremors and muscle stiffness). This new class of therapies treats both the positive (e.g. d elusions and hallucinations) and negative (e.g. social withdrawal, la ck of desire or motivation) symptoms of schizophrenia. And during the course of treatment they have been shown to produce a lower inciden ce of side effects than older medications - especially the serious extr apyramidal symptoms discussed earlier. The positive and negative symptoms of schizophrenia are thou ght to be caused by abnormal levels in the brain of the neurotransmitt ers, including both dopamine and serotonin. Brain messengers like  serotonin and dopamine carry messages from certain specific nerve cell s to other cells, or receptors, in the brain. Researchers have suggeste d that people with schizophrenia have too many dopamine receptors i n certain areas of the brain, or else they have receptors that are ove rly sensitive to dopamine. So in the brain of a person who has schizophrenia, too many messages may be sent along these com munication pathways. Conventional antipsychotic drugs work by blocking dopamine r eceptors on brain cells that use this chemical as a neurotransmitter.  It is believed that abnormal levels of dopamine are responsible fo r the positive symptoms of schizophrenia. New treatments, called Serotonin-Dopamine Antagonists, work differently. Not only do they block the dopamine receptors, they also block serotonin receptors in specific areas of the brain. Th ese two receptors appear to interact with each other and drugs which  influence both seem to be able to treat both the positive and negative  symptoms of schizophrenia. Because of this unique mode of action, side effects that are  seen with conventional antipsychotics - e.g. uncontrollable shaking, t remors and muscle stiffness - are greatly reduced. So, many individuals  with schizophrenia find these drugs easier to live with.  ___________________________________________________ ______________  How To Talk To Your Healthcare Professional About Medica tion  Learning as much as possible about the disease, the treatmen ts available, and the side effects of the drugs used in the tre atment of schizophrenia is important. Asking questions of your doctor is justifiable, considering the nature of the disease and the course of treatment. Open-ended quest ions like "what do you think about the new treatments?" will enable th e person with schizophrenia and perhaps their family/caregivers to di scuss new treatments. Arriving at the best antipsychotic medication an d the right dose of that medication should always be a shared effo rt between the doctor and person with schizophrenia. So if there are co ncerns about current treatments, whether due to side effects, or la ck of symptom control (positive and/or negative) talk to your heal thcare professional.  ___________________________________________________ ______________  Glossary  In addition to providing definitions for some of the medical  terms used in this booklet, included are other words that you may encounter with schizophrenia. Antagonist - Antagonists block receptor sites. Medications u sed in the treatment of schizophrenia are antagonists because they bloc k specific receptors in certain areas of the brain. Antipsychotics - Specific medications used in the treatment of mental illness, like schizophrenia. They are used, as the name sugg ests, to control psychotic symptoms like delusions and hallucinations . Blocking - When the train of thought suddenly stops, especia lly in the middle of a conversation. Cogentin - A medication used to help reduce the side effects  of antipsychotics, e.g. shaking and tremors. Extrapyramidal symptoms (EPS) - Side effects caused by antip sychotics (neuroleptics). They include uncontrollable movements in the  face, arms and legs. Genetics - The science that studies the principles of heredi ty, specifically with respect to how traits and diseases are pas sed from parents to children. Neuroleptics - Medications used in the treatment of schizoph renia that have antipsychotic properties. Neurotransmitter - A chemical in the brain that transmits or  sends messages to other specific cells. Dopamine and serotonin are neurotransmitters, and abnormalities in the level of neurotransmitters, particularly dopamine and serotonin, are thought to be critical in schizophrenia. Occupational Therapy - A type of therapy in which the indivi dual participates in a variety of creative tasks and activities r elated to daily living. This could include painting, woodworking, or p ottery and other activities like creative writing or poetry. Out patient - An individual who comes into the hospital for medical care but does not need to be admitted. Parkinsonism - A side effect of antipsychotics (or neurolept ics) characterized by awkward and stiff facial movements. Psychiatrist - A physician that specializes in treating ment al and emotional disorders. Psychosis - A major mental disorder in which a person's abil ity to think, respond, feel, remember, and communicate is affected.  Contact with reality is usually impaired, interfering with the perso n's capacity to function normally. Receptor - Special places on nerve cells that respond to spe cific chemical messages between cells. Rehabilitation - Programs that help individuals return to no rmal functioning after a disabling disease, injury or addiction. They are designed to help patients live as independently as is possib le. Serotonin-Dopamine Antagonists (SDAs) - A new class of thera pies used in the treatment of schizophrenia. They treat the negative s ymptoms (social withdrawal, loss of drive, lack of emotion) previous ly untreated by antipsychotics, producing less EPS then convent ional antipsychotics. As well, they also control the positive symp toms (delusions and hallucinations) of schizophrenia. Social Worker - A person specially trained to help individua ls with social adjustment. A social worker would counsel a person wi th schizophrenia and their family in dealing with the social an d emotional issues that are a result of the disease.  ___________________________________________________ ______________  Reprinted with permission.  ___________________________________________________ ______________  Internet Mental Health (www.mentalhealth.com) copyright © 19 95-1996 by Phillip W. Long, M.D.  ___________________________________________________ ______________ SAUCE00Schizophrenia is taking me home Phillip W. Long, MD Janssen Pharmaceutic19961002%ŠPi