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RAYS of HOPE L E A R N I N G A B O U T SCHIZOPHRENIA: RAYS of HOPE A Reference Manual for Families and Caregivers FOURTH REVISED EDITION Copyright © 2012 Schizophrenia Society of Canada This material does not provide medical or any other health care or fitness advice, diagnosis, or treatment. The information is for informational purposes only and is not a substitute for professional medical or health advice, examination, diagnosis, or treatment. Always seek the advice of your physician or other qualified health professional before starting any new treatment, making any changes to existing treatment, or altering in any way your current exercise or diet regimen. Do not delay seeking or disregard medical advice based on information in this book. Medical information changes rapidly, and while the Schizophrenia Society of Canada makes efforts to update the content, some information may be out of date. ISBN 0-9733913-0-8 Schizophrenia Society of Canada 100-4 Fort Street Winnipeg MB R3C 1C4 1-800-263-5545 www.schizophrenia.ca Dedication To the thousands of families and their loved ones who deal with schizophrenia every day of their lives: Your courage, endurance, and hope for recovery are a source of inspiration for all. Prologue It is with pride and pleasure that the Schizophrenia Society of Canada (SSC) releases the fourth edition of our Reference Manual for Families and Caregivers. This publication provides valuable information and guidance for people who care for someone living with schizophrenia or psychosis. Approximately 300,000 Canadians have schizophrenia, a disorder that, if left untreated, has the potential to disrupt young people’s lives just when they are in the critical stages of education and/or career planning. Antipsychotic medication continues to be a key cornerstone of treatment for schizophrenia and psychosis. Major advances in drug therapy and psychosocial rehabilitation continue to improve the out- look for this disorder and thereby enhance the potential for people with schizophrenia and psychosis to live meaningful lives and contrib- ute to community. Although there is not yet a cure, 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 options we now have. Unfortunately, however, funding for schizophrenia research in Canada is lower than for any other major illnesses. Since a cure depends upon research, SSC is committed to raising money for research and does so through the Schizophrenia Society of Canada Foundation. In the meantime, the outlook for people with schizophrenia and psychosis continues to improve as our understanding of recovery increases. The strong evidence that people can learn how to live with and recover from serious mental illness has led to a growing awareness of the potential for people with schizophrenia to recover a sense of mastery over their lives and illness, and of the various elements that can promote recovery (See Chapter 14, Recovery and Rehabilitation). This guide will provide insights into the challenges that a person recovering from schizophrenia or psychosis must face, understanding of the disorder itself, and information about its symptoms, treatments, services and supports. It will explore the impact of the illness on families, and offer advice on how to cope with schizophrenia, make sense of the service system, and foster recovery. It is through understanding that v LEARNING ABOUT SCHIZOPHRENIA: R ays of H ope people with schizophrenia and their families will find their path to coping and recovery. Many experts, including family members, have devoted numerous hours to this project. We believe the results of their efforts on this guide will benefit families and their loved ones who live with schizophrenia or psychosis, as well as professional caregivers and the community at large. We can all benefit from a clearer understanding of schizophrenia, psychosis, and the recovery process. 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 through the ten provincial schizophrenia societies across Canada. Then you too may help brighten the lives of those who have been touched by schizophrenia and psychosis. vi Acknowledgements Much has changed since the first publication of Learning about Schizophrenia: Rays of Hope. As a reference manual for families and caregivers it has been instrumental in educating thousands of individu- als and family members about the illness, its symptoms, and important coping strategies for healthy daily living leading to possible recovery. The lifetime emotional, social, and financial consequences experienced by individuals with schizophrenia and psychosis have significant effects on their families. Family responses to having a family member with schizophrenia include: care burden, fear and embarrassment about illness signs and symptoms, uncertainty about course of the illness, lack of social support, and stigma. Family members are frightened and confused by their family members’ strange new beliefs or behaviours, decreased energy levels, loss of motivation, or cessation of usual activities. Marital and sibling relationships are severely tested in response to the symptoms of schizophrenia and psychosis. Most often families do not know how best to respond to these changes in their family member with schizophrenia or psychosis, and need guidance and direction. The good news is that we now know much more about the successful treatment of schizophrenia and psychosis. In fact, recovery is now seen as being possible. Recovery is living “outside” mental illness and living beyond the limitations of illnesses like schizophrenia. Our language to describe the experience of those affected by schizophrenia has changed as well. For these reasons, the Schizophrenia Society of Canada engaged Sangeetha Balachandra (Winnipeg), Bonnie Pape (Toronto), Dr. Phillip Tibbo (Halifax), Dr. John Gray (Victoria), Florence Budden (St. John’s), Kim Heidinger (Steinbach), and Chris Summerville (Steinbach) to edit this fourth edition. Their understanding and application of the recovery philosophy communicates a positive and hopeful message: “Schizophrenia is treatable and recovery of a quality of life is possible with the support of a caring community.” Rays of Hope is dedicated to every family member who knows the burden of having a loved one journeying through mental illness. vii LEARNING ABOUT SCHIZOPHRENIA: R ays of H ope Family members and other natural supports are among those with the most informed experience and passionate concern for their loved ones recovering from schizophrenia or psychosis. The hope of Rays of Hope is to provide families with the needed information and help to move forward with hope. The love and support of family plays an important role in treatment and in the recovery process. If someone close to you has schizophre- nia or psychosis, you can make an enormous difference by helping that person find the right treatment, obtain benefits, and cope with symptoms. You can also play a crucial role by encouraging your loved one and offering support as he or she embarks on the long journey to recovery. But you also need to take care of yourself. You’ll be better equipped to assist your family member if you draw on the support of others and take advantage of supportive services in your community. Dealing with a family member’s schizophrenia can be tough, but you don’t have to do it alone. Production of the fourth edition of Rays of Hope was made possible by a grant from Pfizer Canada. Recovery from mental illness is possible, but it takes the support of a caring community! Florence Budden, BN Chris Summerville, D.Min., CPRP President Chief Executive Officer Schizophrenia Society of Canada Schizophrenia Society of Canada viii Table of Contents Dedication iii Prologue v Acknowledgements vii CHAPTER 1: Introduction 1 CHAPTER 2: What is Schizophrenia? 4 Defining Schizophrenia 4 Causes of Schizophrenia 5 Genes and Genetic Risk 5 Stress and Infections 6 Drug Abuse 6 Nutrition 7 Putting the Puzzle Together: What It Is/What It Is Not! 8 CHAPTER 3: Recognizing Schizophrenia 9 Symptoms 9 Defining Positive and Negative Symptoms 10 Positive Symptoms 11 Negative Symptoms 12 Early Warning Signs of Onset 12 Most Common Signs 13 Other Signs 13 Schizophrenia in Children and Adolescents 15 Childhood Onset 15 Diagnosis 16 Treatment and Services 17 Adolescents with Schizophrenia 18 Recognizing the Symptoms 19 Treatment and Services 20 Coping with Your Teenager’s Illness 21 Daily Living 22 Educational/Vocational Needs 23 Social Needs 23 Mental Health Workers 24 Outlook 24 ix CHAPTER 4: Diagnosing Schizophrenia 26 Other Similar Illnesses 26 Seeking Medical Attention 27 If the Ill Person Refuses to See a Physician 29 Tips on Obtaining Medical Help 30 Keeping Records 31 Initial Assessment 32 CHAPTER 5: Early Intervention 36 Definition and Barriers 36 Rationale and Benefits 39 Scientific Data 40 The Need for Public Education 41 The Need for Patient and Family Education 46 Early Intervention Strategies 46 What to Look for in Assessments 47 Eight Principles of Treatment 48 Medication and Side Effects 51 Alcohol/Substance Abuse 51 CHAPTER
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