A component of The Alliance Program supported by Pfizer Canada Inc. Learning about Schizophrenia: Rays of Hope A reference manual for Families & Caregivers LEARNING ABOUT SCHIZOPHRENIA: RAYS OF HOPE A REFERENCE MANUAL FOR FAMILIES & CAREGIVERS THIRD REVISED EDITION Schizophrenia Society of Canada 50 Acadia Avenue Suite 205 Markham, Ont. L3R 0B3 1-888-SSC-HOPE ISBN 0-9733913-0-8 © Copyright 2003 Schizophrenia Society of Canada Supported by Pfizer Canada Inc. Rays of Hope 1 Dedication To the thousands of families who must deal with schizophrenia every day of their lives: your courage, endurance, and hope are a source of inspiration for all. 2 Schizophrenia Society of Canada Prologue It is with pride and pleasure that the Schizophrenia Society of Canada (SSC) releases the third edition of our Reference Manual for Families and Caregivers. This publication provides valuable information and guidance for people involved with caring for someone who has schizophrenia. Approximately three hundred thousand Canadians suffer from schizophrenia, a tragically debilitating disorder that can rob people of life’s dreams and ambitions, usually in the early stages of education and/or career planning. Antipsychotic medication continues to be a cornerstone of treatment for schizophrenia. Major advances in drug therapy continue to improve the outlook for this disorder*. As yet, however, no cure for schizophrenia has been found. Over the years, research has revealed the biological and genetic links to the origins of schizophrenia, and has contributed to the better quality of treatment we now have. Unfortunately, however, funding for schizophrenia research in Canada is lower than for any other major disease. Since a cure depends upon research, SSC is committed to raising money for research and does so through the Schizophrenia Society of Canada Foundation (for more information on SSC’s research foundation, see section on Research Funding in Chapter 16). Until a cure is found, this guide gives the reader: much insight into the challenges that a person recovering from schizophrenia must face; understanding of the disorder itself, its symptoms, treatments, and its impact on families, advice on how to cope with schizophrenia, and information about the service system. Many experts and family members have devoted numerous hours to this project. It is our belief that this reference manual will help to alleviate the suffering caused by schizophrenia — the suffering of those who have it, and their families – because the understanding it impar ts on you, the reader, will enable you to better cope with the illness. * See page 100,Chapter 8, section on Treatment in the Stable Phase for more information. Rays of Hope 3 This book will benefit families, as well as professional caregivers, and the community at large. We can all benefit from a clearer understanding of schizophrenia. The information contained herein has been gathered from many sources, and reviewed by several experts. It is not, however, intended to replace consultation with professionals. Our roles with SSC bring us into contact with numerous families who struggle with schizophrenia, yet devote many volunteer hours of their lives to improve the quality of life for other people. We urge you to come and meet them, in this book and in our affiliates across Canada. Then you too may help alleviate the suffering caused by schizophrenia. Fred Dawe Joan Montgomery President CEO 4 Schizophrenia Society of Canada Acknowledgements Production of this reference manual, third edition, was made possible by a grant from Pfizer Canada Inc. The development and editing of this book, and research and writing of new materials, was handled by Ms. Geralyn Howell, writer/editor, whose services were retained by the Schizophrenia Society of Canada (SSC) for that purpose. SSC thanks Dr. Anne Bassett and Dr. Jean Addington of the Centre for Addiction and Mental Health, Toronto for their contributions on the chapters concerning research and early intervention respectively. Their direction and comments on the contents of these chapters were especially valuable. We wish to acknowledge Ms. Charlotte Sinclair, and Mr. David Berger for volunteering to review the manual from the perspective of a family member. This time intensive task produced helpful feedback for the project. SSC also thanks the provincial societies, Ms Florence Budden & Ms Leah Young for their comments and contributions to this project. To all these people, and to Pfizer Canada Inc. who sponsored the writing, editing, and publication of this book, I express the sincere appreciation and gratitude of the Board of Directors of the Schizophrenia Society of Canada. Fred Dawe, President Schizophrenia Society of Canada Summer 2003 Rays of Hope 5 TABLE OF CONTENTS Dedication 2 Prologue 3 Acknowledgments 5 CHAPTER 1:Introduction 12 CHAPTER 2:What is Schizophrenia? 14 1) Defining Schizophrenia 142) Causes of Schizophrenia 16 i) Genes and Genetic Risk 16ii) Stress and Infections 17iii) Drug Abuse 17iv) Nutrition 173) Putting the Puzzle Together:What it is/What it is not! 19 CHAPTER 3:Recognizing Schizophrenia 20 1) Symptoms 202) Defining Positive & Negative Symptoms 213) Early Warning Signs of Onset 234) Schizophrenia in Children & Adolescents 27i) Childhood Onset 27a) Diagnosis 28b) Treatment 28ii) Adolescents with Schizophrenia 30a) Recognizing the Symptoms 30b) Treatment 31c) Coping with your Teenager’s Illness 32d) Daily Living 33e) Educational/Vocational Needs 34f) Social Needs 34g) Case Management Services 35h) Outlook 35 6 Schizophrenia Society of Canada CHAPTER 4:Diagnosing Schizophrenia 36 1) Other Similar Illnesses 362) Seeking Medical Attention 373) Keeping Records 414) Initial Assessment 42 CHAPTER 5:Early Intervention 46 Definition and Barriers 46i) Early Psychosis Prevention and v) Prevention and Early Intervention Rationale and Benefits 49The Need for Public Education 52The Need for Patient/Family Education 54Early Intervention Strategies 55i) What to look for in assessments 55ii) Seven Principles of Treatment 57iii) Medication and Side Effects 60iv) Re-integration 61v) Alcohol/Substance Abuse 62Best International EI Practices 63Intervention Centre, Australia 63ii) U.K. program 67Best Canadian EI Practices 69i) Early Psychosis Program and PRIME in Calgary 69iii) Early Psychosis Program, Halifax 71ii) Newfoundland and Labrador Early Psychosis Program, Nfld 72iv) First Episode Program, Clarke Institute, Toronto 73Program for Psychosis, London 76Conclusion 77 CHAPTER 6:Dealing with Crisis Situations 78 1) Do’s & Don’ts 782) Police Involvement 803) Emergency Planning 82 Rays of Hope 7 CHAPTER 7:Acute Episodes 84 1) Hospitalization 842) Building Relations with Health Professionals 863) Planning for Discharge 90 CHAPTER 8:Treatment 94 1) Treatment in the Stabilization Phase 942) You are Important to the Ill Person’s Well Being 953) Treatment in the Stable Phase 98i) Medication 99ii) Side Effects of Antipsychotic Medicine 102iii) Psychosocial Treatments 106a) Psychoeducation 107b) Family Involvement 108c) Social Skills Training 109d) Cognitive Therapy 110e) Case Management 1114) Physical Illnesses 111 CHAPTER 9:Related Illnesses: Medical Comorbidity of Schizophrenia 112 1) Definition and Facts about Comorbidity 1122) Patient and Family Awareness 1133) Common Comorbid Conditions 115a) Obesity 115i) Body Mass Index (BMI) and Risk of Associated Disease 118ii) Causes of Weight Gain 120iii) Strategies to Monitor, Prevent, and Manage Obesity 124b) Cardiovascular Disease (CVD) 127i) Risk Factors for CVD 128ii) CVD and Antipsychotics 130iii) Warning Signs of Heart Problems 131c) Diabetes 134i) Symptoms of Diabetes 136ii) Treatment of Diabetes 136iii) Blood Glucose Levels 138iv) Diabetic Ketoacidosis 1414) Smoking and Schizophrenia 1435) Key Messages 143 8 Schizophrenia Society of Canada CHAPTER 10:Living with Schizophrenia 144 1) What it’s like to have Schizophrenia 1442) Effect on Family Members 147i) Blame & Shame Syndrome 148ii) Impact on Siblings 150a) Feelings 150b) Relationships within the Family 151c) Coping Strategies for Siblings 151d) Coping Strategies for Parents 1523) Living Arrangements 153i) Independent Living 1554) Drugs & Alcohol 1575) Sexuality, Family Planning, Pregnancy & Parenting 157i) Sexuality & Multicultural Issues 159ii) Women & Sexuality 159iii) Family Planning 159iv) Pregnancy 160v) Parenting 163vi) Intimate Relationships 1646) Elderly People with Schizophrenia 164 CHAPTER 11:Coping with Schizophrenia 166 1) Role of Family 1662) Encouraging Medication 1683) Legal Issues 170i) Confidentiality 173ii) Advice from a Crown Attorney (Prosecutor) 175iii) Wills 1784) Finances 180i) Managing Money 180ii) Canadian Disability Tax Credit & Disability Benefits 1815) Support for and from within the Family 1816) Role of Educators 1857) Missing Persons 188 Rays of Hope 9 CHAPTER 12:Impaired Cognition in Schizophrenia 190 1) Is Cognition Impaired in Schizophrenia? 1902) Affect of Cognitive Problems on Daily Routine 1913) Causes of Cognitive Deficits 1914) Assessing Cognitive Problems 1925) What Can Be Done 1926) Current Limitations 1937) Research in Progress 1958) Conclusion 195 CHAPTER 13:Relapses and Chronic Illness 196 1) Relapse 1962) Risk of Suicide 1983) Treatment Resistant Schizophrenia 200i) What is Treatment-Resistant Schizophrenia? 200ii) Evaluating Treatment-Resistant Schizophrenia 200iii) Defining Outcome Measures 201iv) A Systematic Approach to Treatment – Resistant Schizophrenia 201v) Conclusion 2034) Prevention of Relapse 204i) Definition 204ii) How to Prevent Relapse 204 CHAPTER 14:Best Practices in Rehabilitation 208 1) Clubhouses 2082) Women’s Mental Rehabilitation Programs 2123) Assertive Community Treatment Teams 2154) Crisis Response Systems 2185) Early Psychosis Intervention and Prevention Centres 2206) Respite and Peer Support 220 10 Schizophrenia Society of Canada CHAPTER 15:Multiculturalism and Schizophrenia 224 Isolation 224The Need for Awareness and Education 225Help for Families 226 CHAPTER 16:Stigma: Misunderstanding Schizophrenia 228 1) Public Perception 2282) Myths about Violence & Split Personality 229 CHAPTER 17:Research:The Hope for a Cure 232 1) Latest Developments 232i) Technology 232ii) Genetics 2352) Recovery 238i) Rehabilitation 238ii) Treatment Strategies 239iii) Alcohol/Drugs Recovery 2423) Research Funding 2444) The Canadian Brain Tissue Bank 245 CHAPTER 18:About the Schizophrenia Society of Canada 248 Appendix A Glossary – Understanding the Language of Mental Illness 250Appendix B Further Resource Materials 256Appendix C SSC National and Provincial Offices 258 Rays of Hope 11 CHAPTER 1: Introduction Through the ages the Iris flower has been regarded as a symbol for faith, hope, and courage. The Schizophrenia Society of Canada (SSC) chose the Iris as its national emblem, hoping that it would offer encouragement to the persons and families experiencing schizophrenia. This book is also meant to impart support and strength by offering the reader information that will help to deal with some of the fundamental issues related to schizophrenia. It is designed as an educational tool for families, friends, and caregivers of persons who exhibit signs of the disorder, and/or are diagnosed with it. Since the first edition of this book, significant progress has been made, particularly in the treatment of schizophrenia. New drug therapies have emerged, and pharmaceutical companies continue to research and develop medications to help battle schizophrenia. The health care field has adopted a comprehensive strategy for helping people with the illness. While drug therapy remains the cornerstone of recovery, psychosocial treatment has a significantly positive impact on the quality of life of persons with schizophrenia. Various programs are available to help people develop their social skills; learn job skills and get jobs; deal with stress and distress in their lives; understand their illness and its impact on their lives, and achieve as functional a recovery as is possible. And all of this can be done in the community, outside the hospital environment. Gone are the days where a hospital is the only place you can turn to. Now, we have Crisis Response Systems, Clubhouses, and Assertive Community Treatment Teams among other emergency, treatment, and rehabilitation services. Much has been learned about schizophrenia, thanks to ongoing research. Evidence supporting biological cause is abundant, and now points at genetic origin. Gone for good are the days when practitioners blamed parents, and out of guilt, parents blamed themselves. It is exciting to know that awareness about schizophrenia has improved, and continues to grow, hopefully at an increasing pace. This is important not only for support of research, but also for those who experience the disorder. A better understanding in society helps all those affected – bringing them empathy and compassion, and maybe even saving some lives! 12 Schizophrenia Society of Canada This reference manual extends practical advice based on experience; experience that families have willingly shared for the benefit of readers. They have learned the impor tance of being armed with knowledge to deal with schizophrenia. It is upon their advice we have chosen various ideas and topics. We hope by reading it, you will have a good star t on learning about schizophrenia. The scope of this publication is broad, and is not meant to replace medical advice. The most important message the contributing families would like to pass on to you is this: schizophrenia is NOT an illness you can deal with on your own. By joining a suppor t group, you can deal more effectively with your community and provincial health care system, establish your rights, and get appropriate help for someone who is ill. Coping with schizophrenia can be easier when you are not struggling alone. We hope this book will help you with some of the issues and challenges that schizophrenia presents. Topics are broken down for easy digestion and quick reference. As well, subject areas have been separated, for easy reproduction. For more information contact the Schizophrenia Society of Canada at 1-888-SSC-HOPE (1-888-772-4673) OR 905-415-2007. • Remember – it is only through understanding that you will find true compassion, and the strength to cope! Let us help you, starting with this book! Rays of Hope 13 CHAPTER 2: What Is Schizophrenia? DEFINING SCHIZOPHRENIA Schizophrenia is an extremely complex mental disorder: in fact it is probably many illnesses masquerading as one. Symptoms are believed to be caused by a biochemical imbalance in the brain. Recent research reveals that schizophrenia may be a result of misaligned neuronal development in the fetal brain which develops into full-blown illness in late adolescence or early adulthood.1 The disorder is characterized by delusions, hallucinations, disturbances in thinking and communication, and withdrawal from social activity. Schizophrenia is a serious but treatable brain disorder which affects a person’s ability to know what is reality and what is not. A simple explanation of how the brain works helps us to define schizophrenia. There are billions of nerve cells in the brain. Each nerve cell has branches that transmit and receive messages from other nerve cells. The nerve endings release chemicals, called neurotransmitters, which carry the messages from the end of one nerve branch to the cell body of another. In the brain afflicted with schizophrenia, something goes wrong in this communication system. In Schizophrenia: Straight Talk for Family and Friends(p. 41), Maryellen Walsh uses the analogy of a telephone switchboard to explain schizophrenia. “In most people the brain’s switching system works well. Incoming perceptions are sent along appropriate signal paths, the switching process goes off without a hitch, and appropriate feelings, thoughts, and actions go back out again to the world… in the brain afflicted with schizophrenia… perceptions come in but get routed along the wrong path, or get jammed, or end up at the wrong destination.” The disorder may develop so gradually that it is undetectable in the person for a long time, or it may have a very sudden onset with rapid development. It most commonly strikes between the ages of fifteen and twenty-five years, and has therefore come to be known as Youth’s Greatest Disabler. Schizophrenia is found world wide, affecting people of all races, cultures, and social classes; people who 14 Schizophrenia Society of Canada are normal and intelligent; people in all walks of life. In Canada one in every one hundred persons is diagnosed with this disorder in their lifetime; over three hundred thousand people in all. Schizophrenia does not discriminate, but occurs in men and women, affecting one percent of the global populace. Schizophrenia is undoubtedly an intimidating illness; perhaps difficult to grasp at first. Learning as much as you can about the disorder will help you assert as much control as possible over its impact on you, and your family. Rays of Hope 15 CAUSES OF SCHIZOPHRENIA Sometimes schizophrenia-like symptoms may occur with other diseases such as Huntington’s disease, phenylketonuria, Wilson’s disease, epilepsy, tumor, encephalitis, meningitis, multiple sclerosis, and numerous other diseases. The real schizophrenia is diagnosed when these other conditions are excluded as the source of psychotic symptoms. The precise cause of schizophrenia remains unknown. Changes in key brain functions, such as perception, emotions, and behaviour, indicate that the brain is the biological site of schizophrenia. Some researchers suspect neurotransmitters (the substances through which cells communicate) may be involved. There may be changes in dopamine, serotonin, or other neurotransmitters. The limbic system (an area of the brain involved with emotion), the thalamus (which coordinates outgoing messages), and several other brain regions may also be affected. GENES AND GENETIC RISK To a large extent, the activity of neurotransmitters is controlled by genes, and there is very strong evidence indicating that genes are involved in causing schizophrenia. This evidence derives from family, twin and other studies. Schizophrenia occurs in 1% of the general population, but the risk is increased if a relative is affected. There is a 10-15% chance of developing the illness when a sibling or one parent has schizophrenia; when both parents have schizophrenia, the risk rises to approximately 40%-50%. Nieces, nephews, or grandchildren of someone with schizophrenia have about a 3% chance of developing the disorder. The chance that an identical twin will be affected with schizophrenia if his/her co-twin has this illness, is about 50%. Genetic counsellors can be helpful in providing risks tailored to the individual’s family illness pattern. No schizophrenia genes have been found yet. However, researchers have identified several regions on the chromosomes where schizophrenia genes are likely to be. In the future, genes may be found which could help in diagnosis and genetic counselling, and eventually in developing more specific treatments for schizophrenia. Genetic subtype: a possible genetic subtype of schizophrenia has recently been identified that is associated with a small deletion (piece missing) on 16 Schizophrenia Society of Canada chromosome 22. The 22q Deletion Syndrome likely occurs in a small subset of people with schizophrenia who often have learning disabilities and somewhat nasal speech, and may have congenital heart defects, or other physical abnormalities. STRESS & INFECTIONS The role of stress in schizophrenia is unclear. Stress does not cause the illness, but emotional or physical stress (e.g., infections) can trigger or worsen the symptoms when the illness is already present. DRUG ABUSE Drugs (including alcohol and street drugs) themselves do not cause schizophrenia. However, street drugs and alcohol can make psychotic symptoms worse if a person already has schizophrenia. Some drugs (amphetamines or phencyclidine/angel dust) can temporarily create schizophrenia-like symptoms in well persons. NUTRITION While scientists recognize that proper nutrition is essential for the well being of a person with the illness, they do not agree that a lack of certain vitamins causes schizophrenia. Cures with megavitamin therapy are not proven and are often very expensive. Some people do improve while taking vitamins; however, this may be due to the antipsychotic medication they are taking at the same time, the therapeutic effect of a structured diet, vitamin and medication regime, or they may be part of the 30% who recover no matter what treatment is used. Good nutrition is important to the well being of a person suffering from schizophrenia, but alone can not cure the disease, or lead to a successful recovery.• 1 The Centre for Addiction and Mental Health, Toronto, Ontario. Rays of Hope 17 SCHIZOPHRENIA DEFINITELY IS: NOT caused by childhood experiences NOT caused by poverty NOT caused by domineering mothers/passive fathers NOT caused by parental negligence, and NOT caused by guilt, failure or misbehaviour. The more research reveals about the causes of schizophrenia, the better we understand this disorder, and the better modern medicine is able to help us. In research lies hope for a future cure of this illness. And hope begins with you! 18 Schizophrenia Society of Canada PUTTING THE PUZZLE TOGETHER: WHAT IT IS… WHAT IT IS NOT! SCHIZOPHRENIA IS: • A brain disease; a biological illness • Identified by internationally agreed upon and fairly specific symptoms • Characterized by disorganization of thought/perception • Characterized by apathy, lack of interest, lack of attention, social withdrawal • A disorder that often strikes people in their prime (age 15-25 years) • Recovery depends on treatment SCHIZOPHRENIA IS NOT: • Rare – no one is immune • A split personality • The result of any action or personal failure by the individual Rays of Hope 19 CHAPTER 3: Recognizing Schizophrenia SYMPTOMS Just as other illnesses have signs or symptoms, so does schizophrenia. The symptoms may vary, however, with the individual. Persons with schizophrenia will display symptoms as they struggle to discern reality from their own perceptions. Their level of functioning will deteriorate in areas such as: • work or academic achievements • personal care and hygiene • interaction with others Personality changes are a key to recognizing schizophrenia. At first, the changes may be subtle, minor, and go unnoticed. As they worsen they become obvious to family members, friends, teachers, and/or co- workers. There is a loss of feelings or emotions, and a lack of interest and motivation. A normally outgoing person may become withdrawn, quiet, moody, suspicious, and/or paranoid. The person may laugh when told a sad story, may cry over a joke, or may be unable to show any emotion at all. One of the most profound changes is in the ill person’s ability to think clearly and logically. Thoughts may be slow in forming, or come extra fast, or not at all. The person may jump from topic to topic, seem confused, or have difficulty reaching easy conclusions. Thinking may be coloured by delusions and false beliefs that resist logical explanations. One person may express strong ideas of persecution, convinced that he/she is being spied on or plotted against. Others may experience grandiose delusions and feel like Superman – capable of anything and invulnerable to danger. Others still may feel a strong religious drive or bizarre mission to right the wrongs of the world. Perceptual changes turn the world of the ill person topsy-turvey. The nerves carrying sensory messages to the brain from the eyes, ears, nose, skin, and taste buds become confused, and the person sees, hears, smells, and feels sensations which are not real. These are called hallucinations. 20 Schizophrenia Society of Canada It is not difficult to understand why individuals who experience these profound and frightening changes will often seek to keep them secret, deny that anything is happening, or avoid people and situations where they may be discovered. The feedback they receive when they express hallucinations or delusions is disbelief. Ill persons, therefore, feels misunderstood and rejected, and ceases to share their thoughts as a result. These intense internal experiences trigger other feelings of panic, fear, and anxiety – natural reactions under the circumstances. These feelings can further amplify their extreme emotional state. The psychological burden may be intense: most of it kept inside, its existence denied. The pain of schizophrenia is further accentuated by the persons’ awareness of the anguish and suffering they are causing their family and friends. Those who suffer from schizophrenia require a lot of understanding, patience, and reassurance that they will not be abandoned. As the symptoms of schizophrenia become noticeable, the ill person will likely experience a sense of alarm and fear. Obviously, the sooner the symptoms are recognized and diagnosed, the sooner the person will benefit from medical help. Once you’ve confronted the disorder and the fear that goes along with it, you’re on your way to recovery. DEFINING POSITIVE AND NEGATIVE SYMPTOMS Understanding the terminology used by medical professionals can help you in your efforts to deal with this illness. The symptoms of schizophrenia are classified into two categories: positive symptoms and negative symptoms. They are described for you below: POSITIVE SYMPTOMS Hallucinations are thought to be a result of over-sharpening of the senses and of the brain’s inability to interpret and respond appropriately to incoming messages. Persons with schizophrenia may hear voices or Rays of Hope 21 see visions that are not there, or experience unusual sensations on or in their bodies. Auditory hallucinations, the most common form, involve hearing voices that are perceived to be inside or outside of the person’s body. Sometimes the voices are complimentary or reassuring. Sometimes they are threatening, punitive, frightening, and may command the individual to do things that may be harmful. Delusions are strange and steadfast beliefs that are held only by the person suffering from the disorder. They are maintained despite obvious evidence to the contrary. For example, someone with schizophrenia may interpret red and green traffic signals as instructions from space aliens. Many people with schizophrenia who suffer from persecutory delusions are termed paranoid. They believe that they are being watched, spied upon, or plotted against. A common delusion is that one’s thoughts are being broadcast over the radio or television, or that other people are controlling the ill person’s thoughts. Delusions are resistant to reason. It is of no use to argue that the delusion is not real. Thought disorder refers to problems in the way that a person with schizophrenia processes and organizes thoughts. For example, the person may be unable to connect thoughts into logical sequences. Racing thoughts come and go so rapidly that it is not possible to catch them. Because thinking is disorganized and fragmented, the person’s speech is often incoherent and illogical. Thought disorder is frequently accompanied by inappropriate emotional responses: words and mood do not appear connected to each other. The result may be something like laughing when speaking of somber or frightening events. Altered sense of self is a term describing a blurring of the ill person’s feeling of whom he/she is. It may be a sensation of being bodiless, or non- existent as a person. The ill individual may not be able to tell where his/her body stops and the rest of the world begins. Or he/she may feel as if the body is separated from the person. NEGATIVE SYMPTOMS Lack of motivation or apathy is a lack of energy or interest in life that is often confused with laziness. Because ill persons have very little 22 Schizophrenia Society of Canada energy, they may not be able to do much more than sleep and pick at meals. Persons with schizophrenia can be experiencing life without any real interest in it. Blunted feelings or blunted affect refers to a flattening of the emotions. Because facial expressions and hand gestures may be limited or nonexistent, individuals with schizophrenia seems unable to feel or show any emotion at all. This does not mean that the individuals do not feel emotions and are not receptive to kindness and consideration. They may be feeling very emotional but cannot express it outwardly. Blunted affect may become a stronger symptom as the disease progresses. Depression involves feelings of helplessness and hopelessness, and may stem in part from realizing that schizophrenia has changed one’s life; that the feeling experienced in the psychotic state is an illusion, and that the future looks bleak. Often persons believe that they have behaved badly, destroyed relationships, and are unlovable. Depressed feelings are very painful and may lead to talk of, or attempts at, suicide. Social withdrawal may occur as a result of depression; a feeling of relative safety in being alone; being caught up in one’s own feelings, and/or fearing that one cannot manage the company of others. People with schizophrenia frequently lack an interest in socializing, or at least the ability to demonstrate/express this interest. EARLY WARNING SIGNS OF ONSET One of the difficulties in reading the early warning signs of schizophrenia is the easy confusion with some typical adolescent behaviors. Schizophrenia can begin to affect an individual during the teen years, a time when many rapid physical, social, emotional, and behavioral changes normally occur. There is no easy method to tell the difference. It’s a matter of degree. Family members tell of different experiences. Some sensed early on that their child, spouse, or sibling was not merely going through a phase, a moody period, or reaction to the abuse of drugs or alcohol. Others did not feel their relative’s behaviour had been extraordinary. If you have any concerns, the best course of action is to seek the advice of a trained mental health specialist. Rays of Hope 23 The following list of early warning signals of mental illness was developed by families affected by schizophrenia: Most Common Signs • Social withdrawal, isolation, and suspiciousness of others • Deterioration and abandonment of personal hygiene • Flat expressionless gaze • Inability to express joy • Inability to cry, or excessive crying • Inappropriate laughter • Excessive fatigue and sleepiness, or an inability to sleep at night (insomnia) Other Signs • Sudden shift in basic personality • Depression (intense and incessant) • Deterioration of social relationships • Inability to concentrate or cope with minor problems • Indifference, even in highly important situations • Dropping out of activities (and life in general) • Decline in academic or athletic performance • Unexpected hostility • Hyperactivity or inactivity, or alternating between the two • Extreme religiousness or preoccupation with the occult • Drug or alcohol abuse • Forgetfulness and loss of valuable possessions • Involvement in auto accidents • Unusual sensitivity to stimuli (noise, light, colour) • Altered sense of smell and taste • Extreme devastation from peer or family disapproval • Noticeable and rapid weight loss 24 Schizophrenia Society of Canada • Attempts at escape through geographic change; frequent moves or hitch-hiking trips • Excessive writing (or childlike printing) without apparent meaning • Early signs of migraine • Fainting • Irrational statements • Strange posturing • Refusal to touch persons or objects; insulation of hands with paper, gloves, etc. • Shaving head or removal of body hair • Cutting oneself; threats of self mutilation • Staring, not blinking, or blinking incessantly • Rigid stubbornness • Peculiar use of words or language structure • Sensitivity and irritability when touched by others • Change of behaviour: dramatic or insidious None of these signs by themselves indicate the presence of mental illness. Few of those who helped compile this list said that they had acted on these early warning signs. With the benefit of hindsight, however, these family members urge you to seek medical advice if several of the behaviours listed above are present, or constitute a marked change from previous behaviour, and persist over a few weeks. Rays of Hope 25 Many families noticed that there was no logical flow of ideas during conversation. Others noticed that their relative began speaking out loud to no one, and did not seem to hear other people speaking to him/her. One young man began researching all religions and cults. Another young man began turning off all radios because he believed that he was receiving messages through this medium. In some families, their relative destroyed his/her bank book, birth certificate, and photographs. Signs of paranoia became apparent in many cases. A relative would begin talking about plots against him/her, and had evidence that he/she was being poisoned. One man said that whenever his wife saw people talking, she assumed they were talking about her. Eventually, families reached a point where they could not tolerate the differences in behaviour any longer. Many commented that there was much confusion in the home, with some resentment and anger toward the person behaving strangely. Siblings often felt that their brother or sister was merely lazy and shirking responsibilities; children were embarrassed and confused by their parent acting so differently; parents disagreed on how to handle their child’s problems; or the stability of the family frequently suffered. All contributors stressed that you should not wait for tensions to reach such extreme levels. You should seek outside help from your family physician or some other appropriate source. It is important to remember that early diagnosis leads to early treatment, taking you to the path of recovery. 26 Schizophrenia Society of Canada SCHIZOPHRENIA IN CHILDREN & ADOLESCENTS CHILDHOOD ONSET Childhood-onset schizophrenia (onset by age 12) is a rare, clinically severe form of schizophrenia that is associated with disrupted linguistic and social development long before the appearance of definitive psychotic symptoms. In its early phases, the disorder is difficult to recognize. Child psychiatrists look for several of the following early warning signs: • Difficulty discerning dreams from reality • Seeing things which aren’t really there • Hearing voices which are not real • Confused thinking • Vivid and bizarre thoughts and ideas • Extreme moodiness • Odd behaviour • Paranoia (thinking people are deliberately trying to harm them) • Behaving younger than their years • Severe anxiety and fearfulness • Not being able to discern television from reality, and/or • Severe problems with making and keeping friends Rather than an acute onset, schizophrenia in a child may occur slowly, over a long period of time. You may notice that the child becomes shy or withdrawn when he/she used to enjoy interacting with others. He/she may start talking about strange fears and ideas, or say things that don’t make sense. You may notice your child suddenly clinging to you a lot. It may be that the child’s teachers notice some of these early signs being exhibited at school. Two of the most commonly reported psychotic features in children are auditory hallucinations and delusions. Rays of Hope 27 DIAGNOSIS Assessing possible psychosis in a child requires multiple sessions to establish the mental status of the child; details of the child’s history including school reports, any neuropsychological test data, speech and language evaluations, and neurological and genetic consultations. If your child is experiencing hallucinations and/or delusions, this evidence alone is insufficient to diagnose schizophrenia. Chronic symptoms and social impairment (e.g., historical developmental problems and changes in academic and social functioning) are key determinants. Researchers feel that the precursor of schizophrenia may include: • Developmental delays • Disruptive behaviour disorders • Expressive and receptive language deficits • Impaired gross motor functioning • Learning and academic problems • IQ in the borderline to low-average range • Transient symptoms of pervasive developmental disorder (autistic-like) Children who have been diagnosed with schizophrenia should be monitored very closely for several years. As new information becomes available from observing the child, the diagnosis may need to be reevaluated. TREATMENT Children who have been diagnosed with schizophrenia will usually benefit from medication (to diminish their symptoms) and psychosocial treatments. Many issues should be considered in developing a treatment plan including the child’s current clinical status, cognitive level, developmental stage, and the severity of the illness. To support the therapeutic relationship with the child, it is important that he/she has a consistent group of caregivers to enable him/her to form a trust in his/her care. At this age, persons with schizophrenia will have difficulty understanding the nature of their illness. It is, therefore, important for parents/guardians and caregivers to know how to recognize changes in mood, behaviour, or thought processes that may indicate relapse in 28 Schizophrenia Society of Canada order that treatment can be obtained quickly. Researchers feel that early detection of clinical deterioration is important because psychotic relapses may have a cumulative effect and impede a good recovery level of functioning. Parents should seek counselling on how to recognize the symptoms and behaviours associated with their child’s disorder; how to provide the least stressful environment for the child, and problem-solving strategies to deal with disturbing behaviours. Both typical and atypical neuroleptic drugs are acceptable first-line treatments for children with schizophrenia. Choosing a type of antipsychotic is based on past response, family history of response, cost, and the ill person’s tolerance of side effects. Note that children are susceptible to the same side effects from neuroleptics as are adults. Also, they have a higher vulnerability to side effects such as weight gain, extrapyramidal symptoms, and tardive dyskinesia. In order to sustain a good recovery, it is best to minimize stress for your ill child. As children recover, they can be integrated back into their environments of home, community, and school. Children with schizophrenia often need individualized school programs and special activities. Strong levels of suppor t from parents and caregivers will be impor tant, especially because of the child’s vulnerability to relapse. Psychosocial interventions applicable to your ill child include occupational therapy that focuses on activities of daily living, social skills training, speech and language therapy, and recreational and art therapy. During the stable phase it is important to monitor the child’s cognitive impairments as well as assets. This information can be helpful in planning the child’s treatment, and can better prepare him/her for adjustment into adulthood. If you are concerned, have the child completely evaluated by a psychiatrist. Families recommend that you ask your physician or pediatrician to refer your child to a psychiatrist who is specifically trained to deal with children who have schizophrenia. Rays of Hope 29 There is evidence to suggest that early treatment with antipsychotic medications can prevent detrimental changes that may result from prolonged untreated psychosis. Facing the possibility that your child might be suffering from schizophrenia is undoubtedly heartbreaking. The best way to help your child and cope with this disorder is to make knowledge your suit of armour, and hope your ally! ADOLESCENTS WITH SCHIZOPHRENIA Schizophrenia has its peak onset from approximately age 15-25. Therefore, the first signs of the disorder frequently appear during adolescence. Adolescence is a challenging stage for any family, but when an adolescent is diagnosed with schizophrenia, the challenges become truly daunting. RECOGNIZING THE SYMPTOMS Early onset might signal a more severe form of illness, possibly associated with stronger genetic predisposition (family history of schizophrenia), or more premorbid abnormalities (long-standing abnormalities that existed prior to the first onset of symptoms), e.g., learning disorder, pervasive developmental disorder (disorders with autistic-like characteristics), impaired social skills, etc. While the major symptoms of schizophrenia in adolescents are essentially the same as in adults, it is often difficult in young people to discriminate schizophrenia from affective psychoses (e.g., depression or manic-depression with psychotic features, or schizoaffective disorder). This is because symptoms may appear mixed and undifferentiated in first psychotic episodes in young people. There is, unfortunately, no definitive test for any of these disorders, and the diagnosis relies heavily on observed and reported symptoms. It is therefore difficult to be one hundred percent certain about the diagnosis in the early stages of illness, especially in children and adolescents, and the diagnosis may be revised in the first few years. 30 Schizophrenia Society of Canada Early onset cases often tend to have a gradual, insidious onset of illness, rather than an abrupt onset. There is often a long period of gradual deterioration in functioning over months or years, referred to as the prodrome, which precedes the onset of over t psychotic symptoms (e.g., delusions, hallucinations, grossly disorganized thinking, and generally being out of touch with reality). The prodrome may be characterized by apathy, withdrawal, speaking less, declining interests and school performance, loss of contact with friends, loss of initiative, bizarre or occult interests/preoccupations, odd behaviours or rituals, neglect of hygiene/grooming, and disorganized thinking manifested as difficulty concentrating or engaging in coherent conversation. The use of drugs or alcohol may act as a trigger (for an illness that was inevitably going to develop at some point in time), or can signify the adolescent’s way of dealing with his/her symptoms (to relieve or mask them). Psychosis that is purely drug or alcohol induced should resolve within days or weeks of not using these substances. Other possible signs include unruly, antisocial, delinquent-like behaviour, or aggression. The prodrome may resemble depression, and it may be difficult to distinguish schizophrenia at this early stage, especially since an adolescent becoming ill with schizophrenia may feel depressed. It is more likely, however, that the ill individual’s mood can be described as blunted or flat rather than sad, and there may seem to be an inability to experience or express appropriate emotion at all. TREATMENT Acute psychotic episodes, par ticularly first episodes, usually require hospitalization for a few weeks for assessment and stabilization. Fur ther treatment can be provided on an outpatient basis in a hospital clinic staffed by a psychiatrist and a nurse. Ill individuals whose course of illness has stabilized, and for whom a medication regime has been established, may be able to receive their treatment from a non-hospital based psychiatrist, family doctor or pediatrician, but many people require re-admissions to hospital for acute psychotic episodes, especially in the first few years. Rays of Hope 31 Sometimes an ill person does not recognize their illness, and refuses treatment.Your province has mental health legislation that will enable you to get help for your ill relative. Consult your provincial Schizophrenia Society, and a mental health or legal professional with expertise in these matters. (See section on Legal Issues, Mental Health Legislation, p. 170 for more information.) The issues regarding medication treatment for adolescents are much the same as for adults. Certain factors are of added impor tance in adolescents, such as the need to optimize cognitive (intellectual) functioning (alertness, concentration, memory etc.) as much as possible to facilitate the continuance of academic studies. Certain side effects, such as weight gain and acne, are par ticularly problematic for adolescents and may lead to non-compliance with treatment. Compliance is generally a major problem for adolescents, and often requires extra effort on the part of parents to help ensure that their child takes the medication. A suppor tive, empathic and stable doctor-patient relationship is naturally important in ensuring compliance with medication, as adolescents with schizophrenia are frequently mistrustful and guarded, if not over tly paranoid, and lack insight about the need for treatment. Once stabilized, the doctor, nurse or other therapist can engage the adolescent in ongoing supportive counselling, talking about day-to-day events and stresses, encouraging the adolescent to verbalize thoughts and feelings and develop better reality-testing and problem-solving abilities. More intensive, introspective, analytically-oriented psychotherapy is generally not applied, as such therapy can be too stressful and disorganizing for individuals with schizophrenia. COPING WITH YOUR TEENAGER’S ILLNESS Families usually need a lot of emotional and practical suppor t while coming to terms with their loved one’s illness, and steering their way through the turbulent first few years. In many cases the first few years 32 Schizophrenia Society of Canada are the worst, and the illness may begin to stabilize thereafter. The diagnosis represents for many parents a devastating loss of ideals and expectations. Understandably, you may go through a grieving process as you struggle to accept the new reality. It is important to know that you could not have caused this brain disorder in your child any more than you could have caused diseases such as Alzheimer’s dementia. Stressful family interactions (e.g., high levels of hostility and criticism) just like other stresses can, however, contribute to relapse of symptoms in individuals who already suffer from schizophrenia. Families can benefit by receiving as much education as possible about the illness and its management, including information about how to minimize communication/interaction patterns that might cause added stress for all involved. Additional parent support is available in the form of family meetings with a social worker, to address the impact of the illness on the family, and to obtain help in working out the best way to manage the individual’s behaviour and communicate effectively with them. Parent and sibling suppor t groups can also be very helpful. Remember that as family and caregivers, you are par t of the solution, not part of the problem. Families have become increasingly empowered in recent years, becoming a most important lobby group, and influencing policy and funding for schizophrenia. Parents should participate in their child’s treatment, regularly attending appointments with their child’s doctor or nurse, and providing useful information regarding their child’s symptoms and functioning (while respecting the adolescent’s increasing need for a degree of privacy and autonomy and avoiding infantilizing the adolescent). Relationships with adolescents can be stormy sometimes, as they may vent frustration and anger on the people with whom they feel the most secure. The needs of siblings should also not be forgotten during the illness. Siblings need love and attention, reassurance and explanations for their mentally ill sibling’s behaviour. Please refer to Chapter 10 (2) (ii) for more information on this subject. DAILY LIVING Ill persons may need to leave the family home and live in a structured, supervised residential setting such as a group home. This may be Rays of Hope 33 necessary due to behaviour that is too difficult to manage at home, or too disruptive to siblings, or it may be a developmentally appropriate stage in separation from parents and preparation for semi-independent or independent living. Strained family relationships can sometimes improve when mentally ill adolescents and their family have more space and time to themselves, and there is less day-to-day stress in their relationships. EDUCATIONAL/VOCATIONAL NEEDS Once ill persons are in the recovery stage, they may be able to continue with academic studies or job training. Adolescents with schizophrenia usually have special educational needs. They may require additional supports and a reduced academic load, or they may benefit from being in an alternative school/day program specifically designed for adolescents suffering or recovering from mental illness. Such schools might be connected to hospital clinics or community mental health agencies. Older adolescents may need assistance with vocational training, job placement, or post-secondary education, if appropriate. Many will require financial support in the form of a government disability pension whereby part-time work, sheltered employment, or volunteer work may be more suitable for their level of functioning. SOCIAL NEEDS Schizophrenia leads to impairment of social skills, loss of initiative, and frequently, paranoia. The result is often active social avoidance. Peer relations are critical to normal adolescent development. Adolescents with schizophrenia may need help in improving their social skills and reconnecting with peer groups. Some adolescents recovering from an acute psychotic episode and hospitalization may be successful at reconnecting with old friends. Others find it easier to relate to peers who have also experienced mental illness. Social reintegration may be assisted by participation in social skills training groups, psychiatric day programs, or structured social activities in the community. 34 Schizophrenia Society of Canada It is important to note that boys often get this illness at an earlier age than girls.The implications of this can be devastating to a young man whose social skills are not yet fine tuned (boys social skills typically develop slower than those of their female counterparts). Since women tend to get the illness at an older age, their social skills are usually developed, and they may have already established relationships with a male partner. CASE MANAGEMENT SERVICES Case management services are very helpful in coordinating all the above elements of daily life. A case manager is a community worker assigned to help the mentally ill adolescent and his/her family with a full range of needs in a flexible, community-based manner. The case manager develops a long-term relationship with the individual and his/her family, liaising with mental health services, linking the individual to appropriate services for his/her various needs (e.g., residential, financial, educational, vocational, social) and providing crisis support when necessary. For more information on this subject, please refer to Chapter 8 (3). OUTLOOK Schizophrenia is a severe and persistent mental illness, not just a phase, and realistic expectations need to be set in terms of the individual’s functioning. But there is much more room for optimism now than in the past. The goal of therapy is not only to help adolescents regain as much as possible of their previous level of functioning, but also to help them to progress with the develop-mental tasks appropriate to their age. Therapy needs to take into account the individual needs of adolescents, with their uniquely evolving personality, and particular home and social circumstances. With early and continuing treatment (antipsychotic medication and psychosocial rehabilitation), and ongoing research to improve treatments, adolescents with schizophrenia may be able to achieve significantly better functioning than was the case in the past for many people suffering from this serious illness. • Rays of Hope 35 CHAPTER 4: Diagnosing Schizophrenia OTHER SIMILAR ILLNESSES There is, as yet, no simple lab test to diagnose schizophrenia. Therefore, the diagnosis is based on symptoms — what the person says, what the family reports, and what the doctor observes. To reach a diagnosis of schizophrenia, other possible causes such as drug abuse, epilepsy, brain tumor, thyroid or other metabolic disturbances, such as hypoglycemia, as well as other physical illnesses that have symptoms like schizophrenia, must be ruled out. The condition must also be clearly differentiated from bipolar (manic- depressive) disorder. Some ill individuals show symptoms of both schizophrenia and manic depression. This condition is termed schizoaffective disorder. If your doctor does diagnose schizophrenia, do not assume that he/she has ruled out the possibility of another illness. Do not hesitate to ask about other illnesses and ask on what grounds the doctor has determined that schizophrenia is the problem. Where an illness as confusing and variable as schizophrenia is concerned, you should ask for a second medical opinion and a psychiatric referral, whether or not you are satisfied with your doctor’s response. A request of this nature is perfectly acceptable. Do not feel that the doctor will take it as a personal criticism. Caution is in order because seemingly telltale symptoms, even in combination, may not be evidence of schizophrenia. They might be evidence only of an overworked imagination or extreme stress due, for example, to a death in the family, or break-up of a marriage. The crucial factor is the relative ability to turn off the imagination. Today, increasingly precise diagnosis helps to ensure that warning signs are not misinterpreted. 36 Schizophrenia Society of Canada A diagnosis that confirms schizophrenia may be heart- breaking for you and your family. Remember there are many others like you, who have experienced the feelings that burden you. Seek consolation and support at this difficult time. It will help you cope, and you will learn valuable lessons to help the person with schizophrenia. SEEKING MEDICAL ATTENTION Family members will likely be the first to recognize the need to get medical attention for he/she affected loved one. Take the initiative. Ask your family doctor for an assessment if mental illness is suspected. It is important to realize that your relative may be genuinely unaware of the abnormality of his/her symptoms — remember that ill persons believe that the hallucinations, delusions, or other symptoms are real. They may, therefore, resist any suggestion to see a physician. Even if ill persons are aware that something is wrong with them, their confusion and fear about the problem may convince them to deny its existence or abnormality. Efforts to have your relative agree to visit a doctor will likely be more successful when made without reference to strange behaviour (e.g., “You’ve been acting really weird lately”, or any reference to the feelings of others; “Your behaviour has been upsetting this family”). Encouraging the ill person to seek medical attention based on symptoms such as insomnia, lack of energy, or sadness will more likely be perceived as helpful and non-threatening. If your relative agrees to see a doctor, ask the receptionist for a double booking (most appointments are only l0 or 15 minutes long) so that you will not feel rushed. Then, after you have arranged the appointment, send the doctor a letter outlining your concerns as clearly as possible. In addition to assisting the doctor, this will help you be clear about what has been happening. The following is a sample letter: Rays of Hope 37 Dear Dr. Smith, I have made an appointment for my daughter, Jane, to see you on Monday, May 8, at 10:00 a.m. Three months ago, Jane began acting in an unusual manner.The following are some of the behaviours that our family has noticed: she cannot sleep at night; has dropped out of her favourite activities; refuses to see any friends; cries two to three hours a day, and will not allow anyone to touch her. I have enclosed copies of her last two school reports, and a list of comments made by her friends. I believe that a medical assessment is necessary, and I am anxious to hear your opinion. Sincerely, Jane’s Mother and/or Father If your relative refuses to see a physician, however, you should still make an appointment and go on your own. Again, make a double booking, and send a variation of the above letter. After you have visited with the doctor, you may find it easier to get your relative to agree to an appointment. If you have succeeded in convincing your ill family member to go to the doctor, you need to be aware that this first visit may not resolve anything or answer any questions. Families who have been through this admitted that they had hoped this doctor’s visit would be the cure-all, and were frustrated when nothing seemed to happen. During a doctor’s appointment, ill persons may not exhibit the behaviour that you have seen. Some people find talking to a doctor very stressful, and many people with schizophrenia have said that they found themselves going blank during the visit. However, many people with schizophrenia also said that their fear of going to the doctor was somewhat alleviated when the doctor was able to ask the right questions. Because of the letter received in advance, the doctor was able to focus on the symptoms that were bothering the ill person, and the individual found that he or she was 38 Schizophrenia Society of Canada more willing to open up to the doctor. For example, people found it comforting if the doctor said something like: “I understand you’ve been crying a lot lately. You must feel very confused about this.” It is impor tant that you are prepared to supply information to the physician and/or psychiatrist to help them make an assessment. IF THE ILL PERSON REFUSES TO SEE A PHYSICIAN If the ill person refuses to go to a doctor’s office, you could try to arrange for a house visit by the doctor. If a physician does agree to visit the ill person at home, try to prepare your relative ahead of time. Encourage him/her to cooperate as best you can, but understand that the ill person may still refuse to talk to the doctor. If you cannot arrange for a home visit by a physician, or are having trouble getting the ill person to talk to a doctor, seek assistance from your local mental health clinic. They may be able to direct you to alternative options (e.g., a mobile crisis response team, an assertive community treatment team, etc.). After you have unsuccessfully exhausted all available avenues for a voluntary physical/mental examination by a psychiatrist or physician, you may consider having a compulsory examination ordered by a judge. All provinces in Canada have mental health legislation provisions that allow any person to apply to a judge for the compulsory psychiatric examination of another person. Mental health laws require that if you request such an order, evidence must be provided to the court that shows the ill person is suffering from a mental disorder, is refusing to see a physician, and meets criteria for harm, danger, or safety concerns as specified by the provincial legislation. If you have kept records (see Keeping Records section below), it is a good idea to offer them to the judge, as they may be helpful to the decision process. Since the procedures and criteria for these court orders differ between provinces, it is advisable to seek assistance from a mental health professional or lawyer who has exper tise in these matters. Your provincial Schizophrenia Society may also be able to help you. If a court order for examination is granted, it is usually the police who take the ill person to a physician. A medical examination is performed to determine if involuntary admission to hospital is warranted under provisions of the provincial mental health legislation. Rays of Hope 39 If the ill person refuses to see a doctor during a crisis that involves violence or endangerment, and the police get involved, the police are authorized by provincial Mental Health Acts to take the ill individual to a hospital or physician for examination. The physician then decides whether or not the ill person will be admitted to a clinic or hospital on an involuntary basis (see the section on Police Involvement, p. 80). TIPS ON OBTAINING MEDICAL HELP (from a family member): The assessment and treatment of schizophrenia should involve experts in schizophrenia. Consult with your family physician or psychiatrist before accepting any unusual treatment or changing your current treatment program. If you have questions or lack confidence in the advice you receive, remember that you have the right to seek another opinion from another psychiatrist, locally or elsewhere. When seeking a specialist, you will want someone who is medically competent, who has an interest in the disorder, and who has empathy with people who experience it. More specifically, you will want assistance from a psychiatrist who: • believes schizophrenia is a biological disorder • takes the time to do a detailed history • screens for symptoms/problems that could be related to another illness • prescribes antipsychotic drugs with due caution and care • reviews medications and the case regularly • is interested in the ill individual’s entire welfare and makes appropriate referrals for aftercare, housing, social support and financial aid • involves the family in the treatment process • explains the ill person’s status fully and clearly Anyone who tells you that schizophrenia does not exist, or that you should avoid medical treatment if you have it, is not acting in your best interests. Also, individuals who offer guaranteed treatments and cures must be regarded with extreme caution. 40 Schizophrenia Society of Canada The world of medicine is strategic to the recovery of people with schizophrenia. Explore it diligently, and get the best it has to offer. The ill person needs and deserves the best, and so do you! KEEPING RECORDS When you start seeking medical attention for the ill person, it is impor tant to begin, and maintain, a diary or record of your relative’s illness, noting his/her behaviour patterns, any treatment he/she undergoes, and all the steps you have taken to help your relative. Although this may require considerable effort, experienced family members strongly emphasize the value of record keeping. It will greatly assist you in relaying history to the attending physician(s) and other caregivers, in keeping symptoms and issues organized in your thoughts; as well as being a useful reference should relapse occur. Records also provide useful information to help a physician or a judge make decisions regarding involuntary hospital admission. The record should be clear, precise, and in point form. Avoid vague words and rambling descriptions. Medical practitioners stress the importance of listing behaviours that can be observed and measured. For example, you are noting a particular behaviour if you say that Joe refuses to wash, and wears the same clothes every day. This is more useful than saying that Joe looks scruffy. It is also more useful to tell the doctor that Susan cries every night for at least one hour, than to tell the doctor that Susan seems so sad lately. Write down the details of the noted behaviour, and include the day, time and duration, if applicable. Keep a record of your appointments with your doctor, and keep copies of all correspondence. It is essential that you treat your record as a confidential document, one that should be used with discretion. If your relative has paranoid tendencies, knowledge of your record may only convince him/her that you are spying. On the other hand, some families have found that it is helpful to have their relative’s involvement in the record keeping. If you feel it is appropriate, encourage your relative to jot down his/her thoughts and feelings. Rays of Hope 41 You may think that record keeping is just another thorn in your side.The benefit, however, is not only practical but somewhat therapeutic. By documenting important information, you are relieving yourself of the burden to remember. INITIAL ASSESSMENT (source: Canadian Clinical Practice Guidelines for the Treatment of Schizophrenia) The initial assessment of the ill individual should include both a physical examination, and a clinical investigation by a psychiatrist. Generally speaking, a person with a normal health history will undergo tests such as a drug screen, general chemistry screen, complete blood count, and urinalysis. Brain imaging scans may be ordered if neurological signs or symptoms of other brain diseases are present. Neurocognitive testing should be performed. Measurements of intelligence, memory, attention, command functions, language, and visual and motor skills can reveal both preserved and impaired mental abilities — indicating functionality at the community level (and perhaps guiding rehabilitation plans).2 The psychiatrist should make specific inquiries relating to the following: • Positive, negative, and disorganized symptoms, and changes in functioning • When the psychotic symptoms began and possible precipitating factors (e.g., substance use/abuse) • Substance use/abuse • Any history of suicidal thinking and behaviour • Any history of violence, verbal or physical • The ill person’s general medical history • Any family history of schizophrenia and other psychotic disorders (including treatment received), other psychiatric disorders (including addictions and suicidal behaviour), and inherited medical illnesses 42 Schizophrenia Society of Canada • The current lifestyle of the individual, including housing environment, finances, social network and activities, work environment, and general functionality in the community • A developmental history, including social and academic functioning, both in childhood and adolescence These questions will give the psychiatrist clues to, for example, the potential outcome of treatment (the longer the duration of untreated psychosis, the greater the likelihood of poorer results); whether and where the ill person should be hospitalized; and whether other biological investigations should be performed. Arming yourself with knowledge is the best way to help you and your relative, as well as the medical experts with whom you will be working. Asking questions of your psychiatrist(s) is not only a reasonable approach to participating in the ill individual’s assessment, it is necessary to satisfy yourself with information. A good health professional will expect this. Do not be afraid to exhibit your concerns, and demonstrate your commitment – the role you play entitles you to the knowledge that will help you deal with this disorder. Here are some questions to which you (regardless of confidentiality issues) are entitled to have answered by the psychiatrist: Be prepared: Make yourself a list of questions ahead of time. Make sure you have all the answers you want. Don’t be intimidated — the physician’s role is to serve you and the ill person! • What is your diagnosis? • If your current evaluation is a preliminary one, how long will it take to ascertain a definite evaluation? • What is the medical cause of this illness? • Do you feel confident that the possibility of other illnesses has been ruled out? • Has a neurological examination been conducted? What tests were performed, and what were the results? Rays of Hope 43 • Are there any additional tests that you would recommend at this point in time? • Would you recommend an independent psychiatric or other specialist’s opinion at this point in time? • What kind of treatment program do you suggest? How will it work, and what are the results we should expect? • Will other health professionals be involved in this program? If so, how can we ensure their services will be coordinated? • To whom can we refer our questions or problems when you are not available? • Do you plan to include psychosocial rehabilitation in the treatment program? • What will your role/contribution to the treatment process be? • How often will the ill person be seen by health caregivers, and how long will the sessions be? • How soon before signs of progress will be evident? What will be the best evidence that the ill individual is responding to the treatment program? • How much access will the family have to the health caregivers involved? • What do you see as the family’s role in this treatment program? • What medication(s) are you proposing (ask for name and dosage level)? What is the biological effect of this medication? What are the risks and side effects associated with it? How soon will we know its effectiveness? How will we know it is working? What will it ultimately accomplish? • Are there other medications that might be appropriate? Why do you prefer this one? • Are you currently treating other people with schizophrenia? • When are the best times to contact you? Where is the best place to reach you? 44 Schizophrenia Society of Canada • How familiar are you with suppor t groups and agencies that can help us? How do you monitor medications (e.g., regular blood tests)? What symptoms indicate that a change in dose may be required? Will you be monitoring for depression? How do we ensure medication is taken on a daily basis? How often will you reassess the ill person? How do you reassess the individual? • What can we do to help you during the treatment process? If hospitalization is required at some point, which hospital do you suggest? What is the best way to ensure the family will be included in plans to discharge the ill person from the hospital? What are the laws about committal and compulsory treatment? What is your philosophy on them? • Do you have any suggestions about dealing with psychotic episodes? Who do I turn to in the event of an emergency or crisis? If your relative has manic or depressive symptoms, you might ask the psychiatrist whether a thyroid screening was done, and if not, would it be appropriate to do one? If the ill person is over the age of forty, you will want to understand the physical implications of medications. What effect do they have on cardiac functioning? Should regular electrocardiograms be performed? Has the ill person’s blood sugar been measured? Is there any risk of diabetes? Have tests been done to assess other medical problems? See Chapter 9 on Medical Comorbidity of Schizophrenia, p. 112 for more information on health risks for people with schizophrenia. • Once again, be sure to keep a record of all your questions and the responses.You’ll be happy to have it as a reference source. 2 Canadian Clinical Practice Guidelines for the Treatment of Schizophrenia, The Canadian Journal of Psychiatry, November 1998, vol 43, Supplement 2, p. 26s,27s. Rays of Hope 45 CHAPTER 5: Early Intervention DEFINITION AND BARRIERS Early intervention refers to the recognition of the onset of psychosis* (either prodromal stage or first episode of psychosis), and the immediate response to it. We already know from Chapter 3 some of the early signs of onset of schizophrenia. They include, but are not limited to, the following: • a decrease in functionality • frequent changes in jobs or places of residence • changes in personality (e.g., an outgoing teenager becomes withdrawn and avoids opportunities to socialize) • paranoia (perception of being prosecuted or the subject of attention by media) • apathy (lack of emotion or interest) • excessive fatigue and desire to sleep • insomnia • depression and/or anxiety • difficulty with concentration or thinking clearly • decline in academic, athletic, or work performance • restlessness or uneasiness • alcohol or other substance abuse, and/or • unexpected hostility These symptoms tend to precede the onset of schizophrenia, and are known as the early course of schizophrenia. Hallucinations, delusions, and/or thought disorder are examples of psychosis, or the acute stage of schizophrenia. *Please note that psychosis is not only a symptom of schizophrenia, but appears in other serious mental disorders as well. 46 Schizophrenia Society of Canada There are three major hurdles to early intervention. The first is recognition that there is a problem. Studies of ill people experiencing their first episode of psychosis have demonstrated that they typically remain undiagnosed and untreated for several years.3 Fear and a sense of helplessness may trigger an avoidance type of reaction by the ill person and the family. For example, parents may dismiss the ill person’s behaviour as being that of a normal teenager. Another reaction might be to blame the behaviour on a perceived problem with alcohol or other substance abuse. It may be that the ill person senses that he/she is experiencing something out of the ordinary, but does not want others to know about it. It may also be that the ill person does not realize that he/she is experiencing anything unusual. For example, if the ill person is having delusions, he/she likely believes the delusion is reality. Unfortunately, failure to recognize the problem means that the ill person will likely not seek help until the illness reaches an acute stage. While this lack of acceptance and commitment to do something about the problem is understandable, it becomes the second major hurdle to early intervention. Without treatment, the illness cannot be addressed. Without acceptance, treatment is unlikely to occur. In many cases the ill person can continue to function (e.g., in academic, athletic, or career roles) for years while experiencing symptoms of psychosis, and therefore may choose not to seek treatment until such time as he/she can no longer function. Once help is sought out, getting access to care and treatment is the third hurdle to early intervention. This third hurdle is attributable to a lack of education, awareness, and exper tise within the health care system. Understanding of mental illness and its symptomatology is key to proper assessments, diagnoses, and effective treatment of schizophrenia. Research indicates that most people with schizophrenia consult a health care practitioner several times before an accurate diagnosis is made and treatment initiated. This policy of waiting for a complete and accurate diagnosis before commencing treatment is problematic since the process can take up to a year, during which time the ill person continues to suffer. Rays of Hope 47 Poor communication is a component of the access to treatment barrier. The ill person may not be able to adequately express his/her feelings and experiences, leaving a physician with the wrong impression, or at least impeding the diagnostic process. Also, families and ill individuals complain that when they learned of the illness, little or no information about the diagnosis, treatment, and available support was communicated to them by health care professionals. This could be due to the ill person’s inability to process the information while unstable, meaning that the timing of communication was inappropriate. It could also be that the manner in which the communication was made did not suit the recipient, so delivery of information was not successful. Another factor could be insufficient family involvement, caused by the confidentiality issue and failure to get the ill person’s permission to divulge information. The danger of insufficient information is twofold. The first problem is it prevents ill people and their families from getting the help and information they need to deal with the diagnosis. The second danger is it may lead to the development of unrealistically high, or overly pessimistic, expectations for the ill person’s recovery. Not all people with schizophrenia have classic textbook symptoms. Every person’s experience is unique. If you notice strange and unusual behaviour in your loved one, he/she may need help. It is advisable to consult a health practitioner with mental health expertise immediately. 48 Schizophrenia Society of Canada RATIONALE AND BENEFITS Research tells us that one of the biggest obstacles to a good recovery from schizophrenia is the length of time the illness has existed before treatment commences. Statistics show that only twenty to thirty percent of people with schizophrenia experience good recoveries. These statistics have not improved in accordance with the availability of psychosocial support and the advances in antipsychotic therapies. The problem is that before the ill person is treated for the illness, he/she is at risk of losing important skill sets such as social and occupational skills. This is par ticularly true for adolescent individuals who are in the crucial period of maturation, when much psychological and social development occurs. It is also likely that the ill person’s relationship with family will be strained, and his/her pursuit of education or employment interrupted. While medication addresses psychotic symptoms, once these skill sets are lost the ill person will continue to experience a decrease in functioning, resulting in a poorer quality of life, and possibly making the ill person more prone to suicide, depression, aggression, substance abuse, anxiety disorders, and cognitive impairment. It is also more likely that an ill person will be open to treatment and insight into the illness while still in the early stages of it. Once the positive symptoms (e.g., delusions) have progressed, it is more difficult to engage the ill person in treatment.4 The earlier in the illness ill persons get interventions, the easier it is to minimize the resulting disability they experience. Long durations of untreated psychosis have been associated with: Slower and incomplete recoveries More biological abnormalities More relapses, and Overall poorer long-term outcomes. Rays of Hope 49 SCIENTIFIC DATA: In February 2000, the Australian and New Zealand Journal of Psychiatry reported results of a study of early psychosis patients and chronic schizophrenia patients. The study revealed that more people who were treated early on in their illness were able to survive in the community for longer than twelve months, than those people whose illness had reached a chronic stage.5 The analysis was based on their social and occupational functioning and living skills. The Doctor’s Guide News of London, England repor ted in November 2000 that brain imaging studies performed at the London Institute of Psychiatry showed that substantial changes in the brain are present at the earliest stages of schizophrenia. The changes in the brain actually precede the appearance of psychosis, so that by the time people show signs of psychosis, their brain structures have already changed. Dr. Tonmoy Sharma, who led the study, suggests that brain imaging may identify characteristics of schizophrenia early enough that immediate treatment could perhaps prevent psychosis and the full development of the illness, and give the ill person a better chance of recovery. The report acknowledges that people with schizophrenia have a better chance of recovery if their psychosis is treated early on in the illness.6 In November 2002, the National Library of Medicine reported incidental radiological findings on brain magnetic resonance imaging (MRI) in first-episode psychosis and chronic schizophrenia. The findings show that patients with chronic schizophrenia were more likely to have clinically significant abnormal scans than patients with first- episode psychosis.7 Recent developments in research suggest that immediate treatment of the emerging positive symptoms of schizophrenia can greatly reduce the duration of illness, the severity of symptoms, and the impact on the family and community.8 Early intervention (treatment received immediately after the first episode of psychosis, or during the prodromal phase) contributes to better recoveries. Both the Prevention and Early Intervention Program for Psychosis (London, Ontario) and Early 50 Schizophrenia Society of Canada Psychosis Prevention and Intervention Centre (Australia) programs (see Best Early Intervention Practices, p. 63) report that ill individuals who receive appropriate treatment within six months of the onset of psychosis, experience better recoveries than those whose treatment was delayed for more than six months.9 The motivation for early intervention is to reduce suffering for those who are ill and their families. The benefits of immediate treatment are encouraging: • Less interruption in the life of the ill person • Less strain on the ill person’s family • Greater chance of reintegration into social activities, academic and/or career pursuits • Reduced chance of suicide • Less chance of chronic illness (frequent relapses) and disabling disorders (depression, alcohol or substance abuse, anxiety), and • Overall better functioning and quality of life 3 American Journal of Psychiatry 2003 Jan; 160(1):142-8 4 Kingdon & Turkington, 1991, Journal of Nervous & Mental Disease, Vol. 179, pp. 207-211, 1991. 5 Volume 34 Issue 1 Page 122 6 DG News Web site, Doctor’s Guide Publishing © 1995-2003 7 Acta Psychiatry Scand 2002 Nov; 106(5):331-6 8 Early Psychosis Program (EPP) Web site: www.eppic.org.au 9 PEPP Web site, Putting the Pieces Together, Early Recognition of Psychosis, p. 1 Rays of Hope 51 THE NEED FOR PUBLIC EDUCATION Recognizing and accepting that a problem exists, and seeking help are the first steps to receiving treatment for schizophrenia. But how is a person to know that what he/she is experiencing is not something to run and hide from – but rather something that should be treated, sooner rather than later? If and when they do seek medical assistance, how can people suffering symptoms of schizophrenia be sure they will get an appropriate response? The best answer is increased public education and awareness, and better training of health professionals. Public education should be targeted to: authoritative figures in an adolescent’s world; to the medical care system; to families with a history of schizophrenia (whose children are at greater risk of developing the disorder); to young people who exhibit symptoms of alcohol or substance abuse, and to the general public. Family physicians should have specific training to help them detect mental illness in its early stages. Emergency care units and mental health units of hospitals should have specific training in not only recognizing the early symptoms of schizophrenia, but also minimizing the trauma of a first episode of psychosis for the ill person. Often times the onset of illness comes at a young age (between ages of fifteen and twenty-five). Young people are typically still dependent on parents, teachers, athletic coaches, guidance counsellors, clergy, youth agencies and others for direction in their lives. These people can be influential in a young person’s life, and it is very impor tant that they receive information on mental illness, and the early signs of its onset. Awareness will improve the chance of recognition, and once suspected, a teacher or other figure of authority and influence may help the ill person to accept the problem and seek treatment. If the ill person has a good relationship with a teacher or family doctor, wherein he/she trusts the professional, and feels treated with respect and concern, then there is a good chance that this figure of authority will be one of the first points of contact for the youth. It is essential that such individuals be educated about the warning signs of mental illness, and about taking a distressed young person’s complaints seriously. The person with schizophrenia is more likely to seek help voluntarily with the help of someone knowledgeable about mental illness with whom he/she enjoys a healthy interpersonal relationship.10 52 Schizophrenia Society of Canada Such a relationship can also contribute to an ongoing treatment plan, if the professional is diligent in maintaining contact with the ill person, offering encouragement and support where appropriate. Once ill persons embark on the pathway to care, the experiences they have will impact their recovery. Thus it is equally important that doctors and other gatekeepers (nurses, social workers, therapists, paramedics etc.) of the health care system respond adequately and appropriately to an ill person’s request for help. Lack of information leads to delays in treatment, which in turn prolongs the suffering for the ill person. The trauma of a first episode of psychosis can be exacerbated by: being treated in an unsuitable environment (e.g., a dismal and dreary psychiatric ward with seriously ill people); by not getting meaningful human attention; by not getting sufficient follow-up and support from community services, and by the stigma attached to mental illness (which comes from lack of education and awareness). While hospitalization is necessary in some cases, much treatment can begin in outpatient clinics or through outreach programs. Gatekeepers need to be aware of available sources of treatment in their community, as well as have up-to date knowledge and training specific to the needs of both ill individuals and their families dealing with schizophrenia (e.g., young people usually require lower doses of medication for effective treatment of psychosis). The emergency ward is often where a person suffering an episode of psychosis will go. There is a need for emergency wards to have mental health teams with exper tise in assessing early psychosis. Gatekeepers should also have referral networks in order that ill individuals do not get lost in the medical system, but are closely followed by the appropriate practitioners. If an ill person’s first contact with treatment is severely negative, he/she is not likely to want to remain in the care of the medical system. There is also the risk that the ill individual will suffer post-traumatic stress disorder. Many ill people and their families report being shocked and angry by the traumatic and stigmatizing experience of hospitalization. Their message is that forcible confinement, isolation, discouraging psychiatric ward environments, and insensitive treatment are far too overwhelming for a young person, and sometimes have more long-term ill effects than the actual experience with psychosis. Young people with Rays of Hope 53 schizophrenia need lots of human contact, reassurance, encouragement, counselling, and support to accept their illness. One of the advantages of having an educated public is that it is easier for the ill person and his/her family to engage the support of their community. If schools and teachers understand the illness, then they can help the young ill person as he/she tries to continue studies. If work environments have a good awareness of mental illness, they are more likely to support an ill person who tries to continue his/her career pursuits. Community support is key to reintegration of the ill individual, and should be engaged as soon as the ill individual is stable – it is counter-productive to prevent an ill person from doing activities he/she is capable of until a firm diagnosis is made (since that can take one or more years). Families will also need hands-on support from their community. They may require respite services, and are likely to need the help and understanding of other relatives and friends. People generally want to be helpful to those in need, and public education fosters the ability of the general public to respond appropriately to schizophrenia, while removing the stigma attached to it. THE NEED FOR PATIENT AND FAMILY EDUCATION In 1998 an early intervention survey performed by the Canadian Mental Health Association, British Columbia Division, found that the majority of people with mental illness received either minimal or no information about their diagnosis, or about the treatment and support available to them. The findings cited several problems with education for ill people: inability to process or accept the information at an acute stage of illness; lack of opportunities for education beyond the hospital environment; reluctance of professionals to diagnose based on a first experience; delivery of information failing to successfully and accurately communicate to the recipient (invoking unnecessary fear and serious misunderstandings), and failure of communication to be fitting and sensitive to the recipient (invoking fear, demoralization, or denial). The study also found that one of the best sources of information was peer-based education, because it provided knowledge in a less threatening manner, and enabled people with mental illness to share experiences with other people in similar situations. It is imperative that ill individuals receive sufficient and appropriate 54 Schizophrenia Society of Canada information and education about schizophrenia in order to foster their acceptance of the illness, a sense of control over it, and a sense of hope for recovery.11 Education for people with schizophrenia and their families directly impacts the treatment process – without an understanding of the illness, ill people are less likely to fully participate in a proper treatment plan, and families are less likely to know how to help the ill person. The survey found that while families tend to receive some information during the first episode of illness, it isn’t sufficiently specific or practical to help them cope with their situations. Factors such as confidentiality, failure to ask the ill person’s permission, resistance to the diagnosis, and lack of asser tiveness and understanding of the significant role family members play in helping the ill individual cope with the illness are possible contributors to lack of family education. The danger of insufficient and non-specific information is that families may develop expectations for their ill loved one that are either overly morbid or unrealistically high. Families repor ted that most information they received was through their own initiative as opposed to a proactive approach by the health care system to involve them. Families need education that is inclusive of all members, and is sensitive to their reaction to the illness. They need counselling and support to help them accept the devastation associated with schizophrenia, and to help them contribute both emotionally and practically to their ill loved one’s recovery. They require help in knowing how to communicate with the ill person about the illness. Families also have a need to learn from other families in similar situations, and to have a sense of being understood by others.12 EARLY INTERVENTION STRATEGIES WHAT TO LOOK FOR IN ASSESSMENTS An individual exhibiting signs of onset of illness or full-blown psychosis should be immediately and rapidly assessed by a physician. Ideally, the ill person should be assessed in a setting that is non-threatening, and that minimizes stigmatization. Examples of such environments include the young person’s own home, the office of his/her family physician, Rays of Hope 55 or a community clinic with mental health experts specifically trained to handle these delicate situations. There are two components to a full and proper assessment for mental illness: the psychosocial component and the physical component. The health practitioner should be asking questions about the ill person’s social relationships, school or work performance, recreational pursuits, ability to manage finances, attention to hygiene and clothing, religious activities, interaction with family members and/or others in the home environment, and attention to housework. Your ill relative should also be assessed on his/her current strengths and intact functionality (e.g., academic standing, athletic abilities, job abilities, social abilities) in order that clinicians can target treatment to support the ill person’s existing capabilities. Cognitive and intellectual functions should be assessed using a mental status exam. This measures the stressors in the ill individual’s life, his/her coping abilities, type of personality, and attitude toward the disorder. Functions should be closely monitored for any changes and the rate at which change takes place. The ill person’s medical records (from birth and through the developing years) should be examined. He/She should also be given a complete psychiatric assessment, including details on academic, occupational, recreational, and social history. The ill person should also undergo basic neurological and general physical examinations prior to engaging in drug therapy. Any movement abnormalities the ill person may have should be determined. Urinalysis along with a complete blood count should be taken in order to help reveal any infections that may be in the body. The ill person should be measured for levels of glucose and electrolytes, and be tested for functioning of the liver, kidneys, and thyroid. He/She should be tested for HIV and sexually transmitted diseases. A toxicology screen (checks the body for poisonous substances) should be taken. Heart function should be assessed. Also, the ill person’s weight and body mass index should be measured. It is essential that any existing medical problems be fully investigated, as they could contribute to more severe psychoses, leading to depression and a greater likelihood of attempts at suicide. 56 Schizophrenia Society of Canada It is recommended that your ill relative undergo diagnostic reassessments several times each year, in accordance with diagnostic criteria checklists or DSM-IV. This will help prevent the possibilities of misunderstandings surrounding the diagnosis, and the chance of having unrealistic expectations. Re-examinations will also help to ensure the ill person is given the appropriate treatment to help him/her recover. Thorough psychosocial and physical assessments should provide information that will give the ill individual and his/her family as clear a picture as possible on the status of the illness and its impact to date. This will help the ill person and family members to develop realistic expectations for the ill person’s recovery. Also, the more complete the assessments, the better able the physician is to prescribe treatment that suits the particular circumstances of the ill individual. SEVEN PRINCIPLES OF TREATMENT The purpose of drug therapy and psychosocial treatment for schizophrenia is to help the ill person recover to as near to a normal quality of life as possible. Without treatment, there is little or no chance of recovery. It is important for family members to be aware of ways to help ensure the ill person gets the full benefit of a treatment plan, and adheres to it as prescribed. The following principles of treatment will help to promote a successful recovery: 7 PRINCIPLES OF TREATMENT 1) The development of a strong and enduring relationship with the treatment team 2) Attention to the comfort of the ill person 3) Comprehensive and individualized treatment 4) Ongoing intensive treatment for at least several years following the first episode of psychosis 5) Age – and stage – appropriate treatment 6) Attention to the pace and timing of reintegration 7) Early family involvement13 Rays of Hope 57 Development of a strong and enduring relationship with the treatment team. Surveys of patients and families tell us that a good relationship with one or more members of the treatment team promotes long-term adherence to the treatment plan. If the ill person trusts someone involved in his/her therapy, and feels comfortable approaching and confiding in the practitioner, he/she is more likely to follow the prescribed treatment. Attention to the comfort of the ill person. When someone experiences psychosis, it is very distressing. The response he/she receives while undergoing the acute episode of schizophrenia could make the situation worse. If the ill individual is traumatized when hospitalized; experiences poor and confusing assessments; or if he/she suffers strong side effects from drug therapy, then it is less likely the ill person will want to participate in treatment. Comprehensive and individualized treatment. Antipsychotic medication and psychosocial therapy coupled together make the best recipe for a complete recovery plan. Every individual is unique, and people with schizophrenia should have individualized treatment plans designed to meet their par ticular needs and goals, support their strengths, address their weaknesses, and help them maintain a good level of self-esteem and functionality. The goals of treatment should include: • The improvement of psychotic symptoms • The reintegration of the ill person to his/her normal roles and environments as quickly and effectively as possible • The prevention of depression, anxiety and other secondary symptoms • The suppor t and improvement of the ill person’s self-esteem and capabilities, and • The maximization of the ill person’s quality of life 58 Schizophrenia Society of Canada Ongoing intensive treatment for at least several years following the first episode of psychosis. Most people who suffer an acute episode of schizophrenia will take antipsychotic medication for the rest of their lives. It is impor tant that antipsychotic treatment be continuous, as interruptions may lead to a relapse. If the ill person frequently stops treatment, he/she is less likely to make a complete recovery. Psychosocial therapy should also be ongoing and intensive, for at least several years after the first episode of psychosis, in order to suppor t adherence to drug therapy, and promote a complete recovery. Adolescent individuals need help if a transfer of health care services is required when they reach adulthood. The family should be advised well in advance if services will cease at a certain age, in order to arrange for continuing alternative care. Age – and stage – appropriate treatment. It is important that both medication and psychosocial interventions be tailored to the age of the ill individual, as well as to his/her stage in life. For example, young people require lower doses of antipsychotic medicine to maintain stability. Students will need different services than people who are pursuing careers. A female’s medication will likely need to be changed if she decides to bear children. Treatment needs to fit the ill person’s needs and goals as he/she progresses through life. Attention to the pace and timing of reintegration. A primary goal of early intervention is getting the ill person reintegrated into his/her social, occupational, scholastic, athletic, domestic, and other roles as soon as possible. It is important that the plan for reintegration be sensitive to the ill person’s ability to cope. If done too quickly, reintegration may cause the ill individual to be overwhelmed and possibly suffer a relapse. Failure to reintegrate successfully will also likely have a negative impact on the person’s confidence and self-esteem. The timing and pace of reintegration to each former or new activity must be carefully handled. Rays of Hope 59 Early family involvement. The concept of early intervention suggests that family members should be involved as early and as fully as possible. They should be educated about the illness, and the impor tance of their par ticipation in the treatment plan should be emphasized. It is also important that disruption to the family unit be minimized. Chapter 9 deals with the role of the family as well as helping family members cope with schizophrenia. Individuals who are considered at risk of schizophrenia (e.g. a child of someone with the disorder) and are complaining of anxiety, depression, and/or insomnia should be treated for these complaints, be educated on addressing stress factors in their lives, and be closely monitored for development of psychosis. MEDICATION AND SIDE EFFECTS This subject is dealt with in detail in Chapter 8. It is wor th mentioning, however, that young people who suffer a first episode of psychosis tend to be more sensitive to the effects of antipsychotic medication. An adolescent with schizophrenia should, therefore, be given a low dosage of medication to star t. If it is evident that the dosage is insufficient, it should be increased very slowly. In general, young people require much lower doses in order to have their positive symptoms effectively treated. The advantage of lower dose medication is the avoidance of side effects. An initial period of approximately one week should determine if the ill person is tolerating the medication (e.g., symptoms are decreasing with minimal or no side effects). If there is no significant change in symptoms after four to six weeks, then another type of antipsychotic medication should be considered. Much of the improvement the ill person will experience will occur in the first six months of treatment. A maintenance dosage of antipsychotic medication should be continued for at least one to two years (if not indefinitely), and be closely monitored. Psychosocial treatment should be ongoing during this time, with full access to available support services.14 60 Schizophrenia Society of Canada REINTEGRATION One of the goals of early intervention is to facilitate the ill person’s return to his/her normal activities as soon as possible. The ill person must be ready to face the challenge of returning to his/her life in the community, and thus the timing and pace of reintegration must be handled carefully (as mentioned above). Readiness will depend on the rate of recovery from positive symptoms, which could take days or weeks. The treatment team can assist by providing psychoeducation and psychosocial rehabilitation. These services will help assess the ill person’s ability to maintain his/her pre-illness academic or career goals; explore the ill individual’s interests and strengths to see if new activities are more suitable; examine his/her living conditions and ability to live independently, and help the ill person make suitable living arrangements. They will also set goals for returning to social settings. The purpose of rehabilitation is to teach the ill person how to negotiate his/her need for support within the various environments in his/her life. For example, if returning to school, the ill person may require some modifications to his/her curriculum, and/or some study aids. If returning to a job, the ill individual may need to negotiate some changes in responsibilities, or a change from full-time to part- time working hours. Financial assistance and/or disability benefits may be necessary, and the ill person needs to be educated on how to obtain them. He/She may also need help with day-to-day living skills. The longer the ill person is removed from a near normal life-style, the more difficult it will likely be for him/her to reintegrate. It is to the ill person’s advantage to receive early interventions (e.g. psychoeducation and psychosocial rehabilitation) to help him/her return to a normal (or near normal) level of functioning, and family members should strive to obtain the appropriate services for the ill person as soon as he/she is stable. Rays of Hope 61 ALCOHOL/SUBSTANCE ABUSE For people with schizophrenia, alcoholism and other substance addiction occurs up to fifty percent more often than in the general population. It is important for family members to be aware of the signs of alcohol and/or substance abuse, and to understand that the problem may be an indication of the presence of psychosis or the early stages of schizophrenia. They also need to understand the reasons why alcohol and street drugs are dangerous for people with schizophrenia. Chapter 8, section 4, provides more detailed information on this subject. Family members are advised to pursue integrated mental health and substance abuse services for the ill person with an addiction. Treatment should emphasize strategies to solve an existing alcohol or drug habit (e.g., professional help; self-help groups; avoiding problem environments; learning to say “no”). It should also help ill individuals to understand the advantages of abstaining from alcohol and street drugs, and use motivational techniques to promote a healthy lifestyle. 62 Schizophrenia Society of Canada BEST INTERNATIONAL EARLY INTERVENTION PRACTICES EPPIC (The Early Psychosis Prevention and Intervention Centre) One of the two most prominent pioneers in best practices for early psychosis intervention is the Early Psychosis Prevention and Inter vention Centre in Melbourne, Australia. It was developed by Patrick McGorr y in June 1992. Created in a multicultural urban setting, the Centre is an integrated and comprehensive psychiatric ser vice. EPPIC’s goal is to ser ve the needs of older adolescents and young adults with emerging psychotic disorders. Through its programs, the Centre strives to reduce the extended period of delay between the first episode of psychosis and access to appropriate treatment in an appropriate environment. It provides asser tive outreach to young people, some of whom are likely to have left their childhood home, and not have connections to family physicians. The bulk of the Centre’s patients have already experienced a first episode of psychosis. In these cases, the Centre works to reduce the damage created by the illness (e.g., strained social and family relationships, derailed academic or vocational prospects, substance abuse, and behavioural problems). The Centre also plays an active role in educating people in the community who are likely to be involved with youth; for example, school counsellors, youth agencies, general practitioners, etc. EPPIC is also experimenting in developing inter ventions for the early stages of schizophrenia. One of the goals of EPPIC was to remove the trauma and stigmatization young people experienced when they were treated in hospital settings designed for older patients with established illnesses. The clinic began as an inpatient unit, however, moved out of the Royal Park Hospital and into the Centre for Young People’s Mental Health. Since its inception, EPPIC has been successful in significantly reducing the number of admissions to hospital for acute-episode patients. It has also achieved significantly lower re-admissions and total time spent in hospital. The program has been meeting its goals of reducing treatment delays (as measured against a pre-EPPIC sample), getting ill people to adhere to their treatment plans, and successfully treating young ill people with lower doses of antipsychotic medication. Rays of Hope 63 Evaluations show a twenty-five percent improvement in functioning at the twelve-month follow-up in patients cared for under the EPICC program as compared to pre-EPPIC patients. The Centre’s core services include: • The Youth Access Team (mobile crisis assessment and treatment team) • Outpatient case management (OCM) • An inpatient unit • A group program • Cognitively-oriented psychotherapy of early psychosis (COPE) • Family work • PACE clinic (the Personal Assessment and Crisis Evaluation clinic), and • Other sub-programs related to the treatment of psychosis The Youth Access Team is a multidisciplinary mobile crisis assessment and treatment team. It is available 24 hours-a-day, seven days-a-week. YAT serves ill people experiencing a first episode of psychosis between the ages of fifteen and twenty-nine years. It provides crisis intervention in as little as an hour (for urgent referrals), in a manner that minimizes the stress to the ill individual. It will carry out assessments in an environment that is comfortable for the ill youth, such as home, school, or doctor’s office. The team provides intensive treatment, making daily visits (if necessary) to establish a relationship that the young ill person trusts, and to engage him/her in treatment. This approach allows the individual to recover as quickly as possible in familiar, supportive surroundings, with minimal disruption to regular activities. YAT also offers support and information to both ill individuals and their families. As the ill person begins to stabilize, the team will introduce the ill person to the full range of services of EPPIC. YAT provides information on psychosis to professionals in the community and to the general public. The team also plays a key role in forming close links with other service providers. 64 Schizophrenia Society of Canada If treatment in a hospital setting is necessary, the YAT staff work to minimize the trauma of hospitalization. EPPIC has an inpatient unit that is designed especially for young people experiencing a first episode. The goal of this service is to treat the ill person in a manner which reduces the disruption of a hospital stay, and to make the stay as shor t as possible. It is closely linked with all the other services of the Centre, and staff members help the patient to plan for transition to other programs in EPPIC. The facilities at the inpatient unit include: • Recreational activities (ping-pong, board games, spor ts equipment, ar t supplies, television, computers, and books) • Interpreting services (free-of-charge) • A direct line public telephone for patients to stay in contact with their families, and • All meals including specific dietary needs Family and friends are encouraged to visit the patient while at the clinic, and visiting hours are supportive of this goal. A phone number for the physician and nurse assigned to each patient is made available to the families, encouraging open dialogue for the family’s benefit. Once the ill person’s situation has stabilized, he/she is cared for using an outpatient case management approach (OCM). A case manager offers sound, practical advice as quickly as possible to the ill person in order to establish a good working relationship, which in turn promotes adherence to the treatment plan. The treatment plan includes psychoeducation and psychotherapy, and strives to help the ill person function in his/her various roles (e.g., at school, social events, spor ts activities, home, etc.). The OCM will assess the effectiveness of the ill individual’s drug therapy. Crisis intervention is also available to ill young people. Cognitive therapy is available for ill people who struggle with depression, post-trauma reactions, anxiety disorders, and lowered self-esteem on an individual basis. The ill person stays under the care of the case management team for up to two years. The role of the family in supporting a young person with schizophrenia is highlighted in the EPPIC program. Families are treated as collaborators in the treatment plan. Psychoeducation (in the form of both information sessions and family suppor t groups), practical problem-solving, suppor tive psychotherapy, and family therapy services are available to Rays of Hope 65 family members. EPPIC strives to help families as they adjust to the illness by reducing the distress and burden of the first episode, and by teaching coping skills. It offers a four-week series of psychoeducation sessions. The program runs continuously throughout the year, providing information to family and friends on psychosis, treatment approaches, recovery, and maintenance of stability. It is complemented by a family education and support program that offers ongoing information and support to family members. The program also offers the oppor tunity for families to share ideas with other people in similar situations. EPPIC also provides service to individual families who want to talk about their experiences and concerns, and get help with specific problems relating to the first episode of psychosis. EPPIC offers an extensive list of group programs to enhance its service. The table below provides a sample of the subjects encompassed by the group program. EPPIC’S GROUP PROGRAMS • Anger Management • Body and Soul • Cooking and Catering • Coping Skills • Coping with Psychotic Symptoms • Creative Activities • Creative Writing • Drop In • Finding A Balance • Fun and Fitness • Horticulture • Outdoor Adventure Activities • Overcoming Social Anxiety • Personal Support • Psychoeducation • Psychotherapy Group • Stress Management • Vocational Group • Women’s Group 66 Schizophrenia Society of Canada A Group Program Worker (GPM) is assigned to each individual in order to help the ill young person identify his/her strengths; to suggest areas he/she might like to work on, and to help the person set goals and create a plan of action to meet the goals. The GPM also provides suppor t and encouragement to the person, helping to find ways to overcome barriers to their goals, and helping the person recognize and build on existing strengths. EPPIC’s group program offers recovering individuals an oppor tunity to: learn new skills; discover new interests; increase confidence and sense of control in life; develop personal strengths and relationships, and make plans for the future.15 The PACE (Personal Assessment and Crisis Evaluation) outpatient clinic is closely associated with EPPIC and performs a research and education function. It also plays a key role in assessment, monitoring, and support for ill youth who are believed to be at imminent risk of developing psychosis, acting as a referral point to and from other agencies. PACE offers psychological and medical treatments designed to improve and enhance coping strategies. The purpose is to treat the symptoms the ill person is suffering (e.g., insomnia, depression, anxiety) in order to delay the onset of psychosis, and hopefully prevent the development of full-blown schizophrenia. Clients are monitored to help the clinic perform research of pre-psychosis symptoms. They are also examined for brain structure, neuropsychological processes, and drug and alcohol use. Treatment approaches are also evaluated to develop research for those at risk of psychosis. Participants attend PACE for approximately one year on an as-needed basis. EPPIC is a comprehensive early intervention program, and is highly regarded as a best practice in early interventions for people with schizophrenia. BUCKINGHAMSHIRE COUNTY, UK The first (in chronological order) of the two most prominent pioneers in best practices for early psychosis intervention exists in a semi-rural area of England. It was developed by Ian Falloon. The project began in 1984 in a county with a population of thirty-five thousand and a well- established network of family practitioners. Its main goal was to fully integrate mental health care services with primary health care in Rays of Hope 67 order to facilitate early detection before a first episode of psychosis. The program is based on teamwork between family physicians and mental health teams, who train general practitioners to detect mental illness in its early stages. If early signs of a mental disorder present themselves, the mental health team assists the family physician to complete a comprehensive psychiatric assessment. Then an early intervention program including psychoeducation, stress management, and medication is designed for the ill individual. As soon as mental illness is suspected, the ill person and his/her family are educated on the disorder, the available treatment, and the likelihood of recovery. Families involved in the program report that education at this early stage was very useful. It helped them support the ill person, and it promoted teamwork within the family unit. Early education also meant that the ill person was informed before consenting to treatment, promoting his/her buy-in to a treatment plan. Ill individuals and families are taught stress management skills and problem-solving techniques in their own home environment. The treatment team follows the progress of the ill person and his/her family with regular visits. If difficulties or disabilities persist, they are addressed through psychosocial rehabilitation. Nursing care is made available to all people in their home, and is supported by an assertive outreach team that also performs crisis management. Upon the recommendation of the mental health team, the family physician prescribes small doses of neuroleptics if the ill individual shows early signs (prodromal stage) of schizophrenia (such as insomnia or concentration difficulties). The medicine is usually taken for only a brief period (e.g., a week). Both ill individuals and caregivers are trained to recognize specific prodromal symptoms, and the ill individual is regularly monitored by both his/her physician and the assertive outreach team. The hope is that the ill person achieves a rapid recovery after this brief integrated intervention. The results of the program have been very positive. In a four-year evaluation period, only one of fifteen cases developed into full-blown schizophrenia. While the others exhibited patterns of symptoms associated with schizophrenia, they fully recovered. When compared to an early study in Buckinghamshire County, this amounted to a ten- fold reduction in the incidence of schizophrenia. While the results may 68 Schizophrenia Society of Canada be somewhat flawed (due to people moving out of the area, and lack of controlled circumstances) the approach has proven promising for prevention of schizophrenia, and is highly regarded as a best practice in early intervention.16 BEST CANADIAN EARLY INTERVENTION PRACTICES EARLY PSYCHOSIS PROGRAM, CALGARY, ALBERTA The Calgary Early Psychosis Program (EPP) began in 1996 as an outpatient program designed to address early intervention issues such as delays in initial treatment of psychosis, and treatment of emerging symptoms before the first episode of psychosis. The EPP team consists of experts in psychiatry, psychology, nursing, and social work. Ill individuals and their families are entitled to EPP services for up to three years, and are then referred to other agencies or their family physician for ongoing care. EPP’S goals are: • Early identification of psychosis • Reduction of delays in initial treatment • Treatment of primary symptoms of psychosis • Reduction of secondary morbidity • Reduction of frequency and severity of relapses • Promotion of normal psychosocial development, and • Reduction in stress for families and caregivers Ill young persons enter the program via referral by their family physician or other mental health worker. They are given a comprehensive assessment and, if admitted, receive ongoing care of psychiatrists and case managers. The case manager’s role is to ensure individuals: receive education and supportive therapy; are linked to other aspects of EPP, and gain access to outside agencies (e.g., who deal with gaining employment or finding housing). The case manager is Rays of Hope 69 also responsible for ensuring the ill person has access to appropriate services when the three year period of case management expires. Like EPPIC and the UK program, EPP subscribes to the usage of low doses of medication, and addresses persistent positive symptoms by changing medications. The psychiatrist tries to engage the family when deciding on choice of medication, asking for their help in background information and history of experience with medication. This helps promote family understanding and support of the treatment plan. EPP offers cognitive-behavioural therapy (CBT) to ill individuals in order to help them adapt to the diagnosis, to treat depression and anxiety, to address low self-esteem and demoralization, and to reduce vulnerability to relapses. Recent research has demonstrated that CBT can effectively treat psychosis. EPP also offers CBT (in conjunction with antipsychotic therapy) for treatment of positive symptoms of schizophrenia. The program offers family interventions, including: working with individual families; educating families about psychosis; offering strategies for coping with schizophrenia; training family members how to communicate with the ill person, how to problem-solve, and how to deal with a crisis, as well as offering support groups for families. EPP also offers group programs that deal with psychosis education, recovery, social anxiety, healthy living, alcohol and/or substance use, and coping with positive symptoms. EPP recognizes the need for public education on early intervention. It offers education to mental health agencies, family physicians, and schools and colleges in the Calgary community on how to recognize early signs of psychosis, and how to access treatment. EPP works in affiliation with the PRIME Clinic (Prevention through Risk Identification Management and Education). PRIME is a research clinic that studies mental and emotional problems. It offers intervention to individuals between the ages of fourteen and forty-five who sense that something is not quite right with their health. These people who are experiencing prodromal symptoms are offered an opportunity to discuss their concerns, and undergo a detailed assessment. They may also participate in studies the clinic undertakes. 70 Schizophrenia Society of Canada The goals of PRIME are: • To identify people at risk for developing psychosis • To identify individuals in the prodromal stage of psychosis • To delay or prevent the transition from prodromal stage to full-blown psychosis, and • To decrease chronic illness by offering targeted treatment to those people considered at risk EPP and PRIME together create a best practice in early intervention for schizophrenia. They are located at the Foothills Medical Centre, 1403-29 Street NW, Calgary, Alberta, T2N 2T9, and can be reached by telephone at 403-944-4836 or by fax at 403-944-4008. Further information on EPP can also be obtained from their Web site: www.eppic.org.au EARLY PSYCHOSIS PROGRAM, HALIFAX In 1995, Dr. Lili Kopala, an expert in first episode schizophrenia, established the Early Psychosis Program in affiliation with the Nova Scotia Hospital and Dalhousie University. The program is designed to enhance detection of early psychosis and optimize the treatment during its earliest stages. There is a strong research component to the program, with emphasis on how to optimize functioning for people with schizophrenia. The clinical component provides specialized consultation services to mental health practitioners throughout the Atlantic Provinces; clinical consultation and treatment to ill people and their families in Halifax, and education for professionals, families, and the community. For more information on this program, contact the Department of Psychiatry, Dalhousie University, 5909 Veterans Memorial Lane, Queen Elizabeth II Health Sciences Centre, 9th Floor, Lane Building, Halifax, Nova Scotia B3H 2E2. Their phone number is 902-473-4254 and fax number is 902-473-4596. Rays of Hope 71 NEWFOUNDLAND AND LABRADOR EARLY PSYCHOSIS PROGRAM (N&L EPP), ST. JOHN’S, NEWFOUNDLAND Operating out of the Waterford Hospital since 2001, the N&L EPP services clients in the province of Newfoundland and Labrador. People who are between the ages of sixteen and sixty-five who have experienced a first episode of psychosis, and who have not been treated with antipsychotic therapy, or have been receiving it for three months or less, are eligible for this community based program. They may stay in the program for up to three years. N&L EPP uses an interdisciplinary team approach with inpatient treatment where necessary. The team includes a clinical nurse coordinator, program division manager, psychiatrist, nurse case manager, family worker, clinical pharmacist, and a clinical psychologist. Referrals can also be made to an occupational therapist, recreational therapist, and a substance use counsellor. The key clinical components of the program include: • Comprehensive individual assessment (within one to two weeks from referral) • Psychiatric management • Case management • Medication management • Individual family work • Psychoeducation for individuals with schizophrenia and their family members • Psychological interventions including cognitive-based therapy and cognitive assessment, and • Access to occupational therapy, recreational therapy, substance use counselling, and spiritual awareness For more information on the Newfoundland and Labrador Early Psychosis Program you may contact Maureen Penney, Clinical Nurse Coordinator, by phone at 709-777-3614 or by fax at 709-777-3534 or by email at hcc.penmaur@hccsj.nf.ca or write to the Health Care Corporation, St. John’s, Newfoundland, Waterford Bridge Road, St. John’s, Newfoundland, A1E 4J8. 72 Schizophrenia Society of Canada FIRST EPISODE PSYCHOSIS PROGRAM (FEPP), CLARKE INSTITUTE OF PSYCHIATRY, TORONTO Created in 1992 under the leadership of Dr. Rober t Zipursky, this program began with an inpatient unit and an outpatient clinic. The eighteen bed inpatient unit is designed to minimize the trauma to young people experiencing a first episode of psychosis by keeping them separated from long-term illness patients, and having a user- friendly atmosphere with lounges and activities (e.g., ping-pong tables, exercise bicycles, arts and crafts, etc.) The First Episode Psychosis Clinic consists of a multi-disciplinary team of case managers (nurses, social workers, occupational therapists, and psychiatrists) who treat ill people from the ages of eighteen to forty- five on an outpatient basis. Entry to the clinic is by referral (e.g., of a family physician or other health practitioner), and the team of case managers performs a complete assessment of the ill person. The family is asked to meet with the team, which emphasizes early family involvement in the recovery process. An ill person may receive treatment through the clinic for a limited time period before being sent back to the referral source or transferred to the continuing care division of the Schizophrenia Program at the Centre for Addiction and Mental Health. The Clinic is located at the Clarke Institute, Clarke site, 7th and 10th floors, 250 College Street, Toronto, Ontario and can be reached by telephone at 416-535-8501, ext. 4441. Much like EPP in Calgary, this program also works in affiliation with a PRIME Clinic (Prevention through Risk Identification Management and Education). PRIME in Toronto operates much the same as the PRIME service in Calgary, and is dedicated to the early identification and treatment of individuals between the ages of twelve and forty-five who are at risk for developing a first episode of psychosis. The PRIME Clinic is located at the Centre for Addiction and Mental Health , 250 College Street, Toronto, Ontario and can be reached by telephone at 416-535-8501, ext. 4828 or by fax at 416-979-6849 or by e-mail at April_Collins@camh.net. In September 2001, FEPP welcomed the addition of a mobile treatment team known as HIP (Home Intervention for Psychosis), giving the program an outreach element. A multi-disciplinary team Rays of Hope 73 (covering social work, occupational therapy, nursing, and psychiatry) will visit individuals between the ages of sixteen and forty-five in their homes to assess and treat first episode psychosis. The team’s objectives are to: • Reduce the intensity and effects of the ill person’s positive symptoms • Reduce the impact of the illness on the family, and • Help the ill individual return to work or school as quickly as possible Individuals and their families may use HIP’s services for up to approximately six months, and the team will visit as much as is required to promote stability and adherence to a treatment plan. They are available twenty-four hours-a-day, seven days-a-week. Individuals will be referred to a case manager in the Clarke’s program following their treatment with HIP. You can contact HIP by telephone at 416-535-8501, ext. 6865, or by fax at 416-979-6849, or by e-mail at hip@camh.net. FEPP recently received funding for a three-year pilot program known as LEARN (the Learning Employment Advocacy Recreation Network). LEARN is a community-based program dedicated to enhancing the recovery of young people with psychosis, and supporting their families. Participants of FEPP whose positive symptoms have stabilized may use the services of LEARN. LEARN’s goal is to help first-episode people reintegrate to their former level of functioning