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The Complete Family Guide to Schizophrenia: Helping Your Loved One Get the Most Out of Life

The Complete Family Guide to Schizophrenia: Helping Your Loved One Get the Most Out of Life

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by Kim T. Mueser, Susan Gingerich

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Will the person you love ever get better? Chances are you've grappled with the question. With care and support from their families, people with schizophrenia can and do make vast improvements. Noted therapists Kim Mueser and Susan Gingerich deepen your understanding of the illness and cover a wide range of effective treatments. Based on decades of research and


Will the person you love ever get better? Chances are you've grappled with the question. With care and support from their families, people with schizophrenia can and do make vast improvements. Noted therapists Kim Mueser and Susan Gingerich deepen your understanding of the illness and cover a wide range of effective treatments. Based on decades of research and experience, they offer pragmatic suggestions for dealing with depression, psychosis, and other symptoms. They show you how to prioritize needs, resolve everyday problems, and encourage your loved one to set life goals. Plus, individual sections highlight special issues for parents, children, siblings, and partners. Whether you’re facing schizophrenia for the first time or you’ve dealt with its impact for years, you’ll discover innovative ways to handle challenges that arise over the course of treatment, from reducing the chances of relapse to making friends and finding work. Recovery isn't an endpoint--it's a lifelong journey. With love, hope, and realistic optimism, striving for it can lead to a richer, more rewarding life for your entire family.
Winner, NAMI/Ken Book Award

Editorial Reviews

Doody's Review Service
Reviewer: Nicholas Greco IV, MS, BCETS, CATSM (C3 Education and Research, Inc.)
Description: This is one of the most thorough, well written, and meaningful books ever written for family members and friends of those with schizophrenia. This book contains more than just basic information, yet maintains a readable and compassionate stance.
Purpose: The purpose is to provide family and friends with the information to effectively play a well informed role in the care of their loved one. Families are demanding more than just the ability to cope with their loved one's illness, and this book answers those demands with information essential for the new role that family and friends are embracing. This book is a most powerful tool that enables an active presence of family and friends that are so essential in the lives of our patients.
Audience: First and foremost, family and friends will benefit tremendously from this book. In addition, it is essential reading for graduate students in the mental health professions as it provides a different perspective which will aid in their learning and eventual growth as mental healthcare providers. The authors are well known members of the mental health community. This book is one of Dr. Mueser's finest contributions to the field.
Features: The authors do a wonderful job of explaining schizophrenia, thus providing the needed background to explore such topics as special issues for family members and relapse prevention. The section on relapse prevention is essential to ultimately creating the supportive environment. As persons with schizophrenia do have unique issues, part five is devoted to specific problems such as the psychotic (positive) symptoms, the negative symptoms, cognitive problems, anxiety, depression, anger and violence, and alcohol and substance abuse. As many clinical studies have begun to assess the quality of life, the authors provide a lengthy and appropriate discussion on these issues. The affordable price makes the book accessible to the general public.
Assessment: This is one of the most valuable books that any concerned family member or friend of a person with schizophrenia will read. If one is looking for a complete, unbiased, and informative family guide on schizophrenia, look no further!
From the Publisher

"If your loved one has schizophrenia, it challenges your whole family. Mueser and Gingerich cover all the bases to guide you along the road to recovery. Realistic and optimistic at the same time, this book is informative and practical from start to finish."--William T. Carpenter, Jr., MD, University of Maryland School of Medicine and Maryland Psychiatric Research Center

"After our son was diagnosed with schizophrenia, we spent the next four years learning about the illness and trying to help him. We were losing hope until we met Dr. Mueser. With Dr. Mueser's help, and using the principles outlined in this book, our lives and our son's life have greatly improved. So many parents would benefit from reading this book, using the worksheets, and keeping it on hand for continued reference over the years."--Ginger and Frank D., parents

"Too often, people with schizophrenia fall between the cracks of our system of care. This compassionate and comprehensive guide shows how you can strengthen your relationship with your ill family member and help him or her navigate the recovery journey. The authors provide state-of-the-art tools for mastering the extraordinary challenges that schizophrenia poses."--Ken Duckworth, MD, Medical Director, National Alliance for the Mentally Ill; Department of Psychiatry, Harvard Medical School

"Concerned family members often ask me what they can do to help their loved one who is being treated for schizophrenia. For practical answers to this and many other questions, I will certainly recommend this clearly written, uplifting, and optimistic guide."--David G. Kingdon, MD, University of Southampton School of Medicine, UK

"Informative, authoritative, and comprehensive. This detailed guide to understanding and helping someone with schizophrenia dispels common myths and gives very practical advice for a wide range of common problems that family members encounter. It should be given to every family dealing with the diagnosis of a relative. I wish this wonderful book had been available when my brother first became ill."--Xavier Amador, PhD, author of I am Not Sick, I Don't Need Help!

Cognitive Therapy

"An extensive reference for families....The information provided is clearly written, realistic, optimistic in tone, and useful for families at many stages of dealing with the challenges of schizophrenia....As a clinician in a large public academic setting, I would highly recommend the Mueser and Gingerich guide to any patient or family seeking a greater understanding of the complex challenges facing them with schizophrenia and realistic, hopeful ways of meeting those challenges."
Cognitive Behavioral Therapy Book Reviews

"Information presented in a highly readable form and is current. Coverage is comprehensive and includes samples and descriptions of typical symptoms. The reader is helped to make the symptoms of schizophrenia understandable and to recognize the impact on others....[A] comprehensive collection of information and links to resources that should prove to be of great value to anyone dealing with a family member diagnosed with schizophrenia."
The Journal of Nervous and Mental Disease

"A comprehensive and detailed explanation of the causes, symptoms, comorbidities, treatments, and expected outcomes of schizophrenia, along with specific management and coping recommendations for the family members of people with this disorder....This book...is very accessible to family members and consumers in both style and contents. It takes a hands-on approach in providing family caregivers with concrete advice....differs from earlier self-help books on this topic in that its explication of the clinical course of people with schizophrenia embraces of people with schizophrenia embraces contemporary views of recovery and offers guidance in coping with mental illness stigma, thereby empowering caregivers to help empower their relatives. Finally, this book is innovative in that it includes sections on issues and concerns unique to caregivers with different family relationships to the consumer...and for caregivers whose relatives have specific kinds of symptoms or comorbidities....should be on the .must read. list for every mental health professional and family member of a relative with schizophrenia."

"A remarkable book. It is authoritative, comprehensive, well written, and very easy to reference and use. It is filled with useful advice and information on topics such as symptoms of schizophrenia, specific family issues related to the illness, relapse prevention, improving communications, co-occurring substance abuse, involvement with the community, and many other issues and problems faced by persons with schizophrenia....One of the real strengths of this book is how it navigates the relationship between consumers and their families in regard to issues such as autonomy and independence....In my future practice, I will recommend this excellent book whenever I encounter family members whose relative has schizophrenia. It can serve as a guidebook that can be initially read to learn about the area and later referred to in regard to specific issues that arise. I would also recommend it for graduate students who are interested in working with persons with serious mental illness."
The Psychiatric Rehabilitation Journal

"Needed information can be found in this truly remarkable book. It is outstanding not only for the information it provides, but for its organization....I have seen many books about family experiences while living with a relative who has schizophrenia and there are several that tell how to cope, but this book stands alone for thoroughness. The authors have included almost everything a family member needs to know....It is written with clarity and an understanding of the questions a reader might have....I think so highly of this book that I believe that community mental health center or hospital staff should give a copy to every family when a diagnosis of schizophrenia is made."
Schizophrenia Digest

"A straightforward, practical, user-friendly resource that not only provides a thorough overview of the challenging realities—both for the consumer and for family membersof everyday life with schizophrenia, but also details in plain English what can be done to help improve the quality of life for each member of the family."

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The Complete Family Guide to Schizophrenia

Helping Your Loved One Get the Most Out of Life

By Kim T. Mueser, Susan Gingerich

The Guilford Press

Copyright © 2006 The Guilford Press
All rights reserved.
ISBN: 978-1-60623-780-9


Schizophrenia: The Basics

Schizophrenia is a major psychiatric illness that can have a profound impact on the lives of individuals, their family members, and friends. As family members, you are in a unique position to help your relative with schizophrenia. You care deeply for your relative and know him better than any professional. You probably have more contact with him and are in better touch with his moods, feelings, and needs than anyone else. Being aware of changes, for better or worse, before others are places you on the "front line" of treatment, often at a high cost to yourselves. The behavior of people with schizophrenia can be unpredictable, even frightening, at times. It may be difficult to find friends who understand the stress and emotions you're experiencing.

By learning more about schizophrenia and how to cope with common problems, you can reduce the strain of the illness on your family. In this chapter we review facts about schizophrenia that will help you understand your relative's illness and develop realistic goals for the future. Our discussion here is an introduction to schizophrenia and not a comprehensive review of everything known about the illness. For those interested in learning more about the nature and course of schizophrenia, we suggest additional readings at the end of the chapter.

What Is Schizophrenia?

Schizophrenia is a complex and confusing illness for people with the illness, family members, and mental health professionals alike. One reason for much of the misunderstanding about the illness is that the terms schizophrenia and schizophrenic have many different uses in everyday language, the popular media, and the medical community.

In everyday language, the word schizophrenic is often used to mean "contradictory." For example, a person who says one thing and then does another might be described conversationally as "schizophrenic." In the news, a nation with a friendly foreign policy toward one country and an unfriendly foreign policy toward another, similar country might be described as having a "schizophrenic" foreign policy.

When it is used to refer to illness, the word schizophrenic is often used broadly by the popular media to mean psychosis (including symptoms such as hallucinations or delusions) in general or even any severe psychiatric illness. Mental health professionals know that schizophrenia is a specific medical illness that varies in severity. Not all people with psychotic symptoms have schizophrenia, and people with schizophrenia are not always psychotic. Similarly, not all people with schizophrenia are severely ill, nor do all people with severe mental illness have schizophrenia.

Used as a medical term, schizophrenia refers to a specific illness characterized by problems in social functioning, self-care skills, and difficulty distinguishing what's real from what's not real. There is strong evidence that schizophrenia has biological origins; that it is caused by an imbalance in chemicals in the brain. Medication plays an important role in treating the illness by correcting this imbalance. However, there is also evidence that environmental stress contributes to the severity of the illness, with high levels of stress resulting in more frequent symptoms.

The interplay between biology and the environment provides unique opportunities to help your relative by reducing stress and actively supporting the positive steps she takes toward better functioning.

Common Myths about Schizophrenia

Almost everyone in Western society has heard of schizophrenia, but inaccurate depictions of the illness and misuse of the term have perpetuated a number of misconceptions about it. To understand schizophrenia thoroughly, you have to dispense with these myths.

Myth 1: People with schizophrenia have a "split personality." A split personality is a rare psychiatric illness (called multiple personality disorder or dissociative identity disorder) in which two or more personalities exist within the same person Many people became acquainted with the disorder through the movie The Three Faces of Eve and the book Sybil (by Flora Rheta Schreiber) and the movie based on it. People with schizophrenia do not have a split personality. Sometimes the behavior of people with schizophrenia varies or is erratic due to fluctuations in symptoms such as paranoia, depression, or anxiety. However, this does not mean that the person has more than one personality.

Myth 2: People with schizophrenia are highly prone to violence. Despite high-profile coverage of violent crimes committed by those with psychiatric disorders, violence in people with schizophrenia is more often the exception than the rule. Rather than becoming more violent when their symptoms worsen, most people with schizophrenia withdraw, preferring to spend time alone.

Myth 3: Families cause schizophrenia. Mental health professionals once commonly believed that families caused schizophrenia. Although a few professionals still hold on to this outdated belief, most now understand that schizophrenia is a biological illness that is not caused by families. Rather, families can play a vital role in helping their loved ones develop and pursue personal visions of recovery.

Myth 4: Drugs and alcohol can cause schizophrenia. Drugs such as marijuana, LSD, heroin, cocaine ("crack"), PCP ("angel dust"), ecstasy, and amphetamines ("speed") can cause symptoms that closely resemble schizophrenia. For example, drugs such as LSD and PCP can cause hallucinations, marijuana can lead to anxiety attacks and feelings of panic and unreality, and cocaine and amphetamines can cause frightening delusions. Similarly, alcohol abuse and withdrawal can result in many of these symptoms. Most people who experience schizophrenia-like symptoms while using drugs or alcohol stop having these symptoms soon after their substance abuse ceases. However, recent research has found that use of cannabis (such as smoking marijuana) during adolescence and early adulthood is related to an increased chance of developing schizophrenia. Scientists are debating whether using cannabis may trigger the onset of schizophrenia in vulnerable individuals or whether people who are more prone to developing the illness or are in the early stages of it are more likely to use cannabis. Regardless of the role of cannabis, the vast majority of people who abuse drugs and alcohol never develop schizophrenia.

An Overview of Schizophrenia

History of the Concept

The modern concept of schizophrenia as a psychiatric illness has developed mainly over the past 100 years. Although many different individuals have contributed to our current understanding, the work of two pioneers stands out above all others: Emil Kraepelin (1855–1926) and Eugen Bleuler (1857–1939). Kraepelin is credited with first describing the symptoms of schizophrenia as due to a single illness. Kraepelin called schizophrenia dementia praecox, a Latin term referring to the early onset of the illness (praecox) and deterioration in intellectual functioning (dementia). He identified the characteristic symptoms of schizophrenia as hallucinations, delusions, impaired attention span, and social withdrawal.

Bleuler focused more on the nature of symptoms of schizophrenia and less on its course than did Kraepelin. Bleuler believed that the illness did not necessarily have an early age of onset or result in a gradual deterioration in mental functioning. He rejected the term dementia praecox and proposed the word schizophrenia to describe what he saw as the essential feature of the illness: a split (schizo) in the mind (phren) between perception and reality—rather than a split between different personalities. However, he agreed with Kraepelin's description of many of the basic symptoms of the illness.


There is no laboratory test, such as a blood test, X-ray, CT scan, or MRI, that can be used to diagnose schizophrenia. A diagnosis must be based on a careful interview conducted by a trained professional. In addition, a physical exam must be performed to rule out physical problems that could cause similar symptoms. For example, if the person has a brain tumor or an untreated endocrinological disorder (such as hyperthyroidism), or is currently abusing substances, a diagnosis of schizophrenia cannot be made until the physical condition has been treated or controlled.

To ensure that different hospitals and clinics use the same criteria to diagnose schizophrenia, specific diagnostic guidelines have been established (discussed further in Chapter 2). What is important to understand here is that the purpose of the interview is to determine whether the person has experienced any of the symptoms listed in the guidelines. Common symptoms of schizophrenia include hallucinations, delusions, and reduced emotional expressiveness. Other common problems include impairments in thinking and problems in functioning. Every person has a unique set of symptoms. To be diagnosed with schizophrenia, a person need not have every symptom or have them all the time. But all people with schizophrenia experience some problems in social functioning and ability to work, attend school, parent, or take care of themselves.

The symptoms and course of schizophrenia overlap considerably with those of several closely related disorders: schizoaffective disorder, schizophreniform disorder, and schizotypal personality disorder. Because of their similarities and the fact that the same treatments are effective for all, these illnesses are referred to as schizophrenia-spectrum disorders. Chapter 2 goes into more detail on the differences; for the sake of simplicity we use the term schizophrenia throughout this book. If your relative has any of the disorders in the spectrum, you'll find the information and suggestions in this book helpful.

What Is the Experience of Schizophrenia Like?

Having a better sense of the experience of the illness can help you offer appropriate guidance and support over the years. Schizophrenia has been described as "dreaming when you're wide awake." When we dream, we usually believe that the bizarre things we're experiencing are really happening. Your relative may feel that way when awake, having difficulty distinguishing between reality and the internal illusions taking place.

Practically every person with schizophrenia also has problems with attention. One person told us, "It's hard for me to concentrate on anything because I'm so easily distracted—like right now I'm listening to the cars on the highway outside the hospital." This difficulty can interfere with your relative's ability to work, attend school, parent, or participate in other activities that require sustained attention, such as reading a book. One reason peope with schizophrenia have such trouble focusing their attention is that they are often exquisitely sensitive to, and easily overwhelmed by, sounds, sights, odors, and other stimuli. Imagine, as one person described it, playing tennis with many balls coming over the net at the same time.

Problems with motivation and enjoyment are also common. Another person with schizophrenia said, "We used to be a beach family, and I loved going to the beach. Now the beach is just a few blocks away, but I can't get the motivation to go there. Or if I do go, it's not fun." This problem can result in your relative's having fewer leisure activities and getting less enjoyment from social relationships than before the onset of schizophrenia.

Even with this understanding, the experience of schizophrenia is difficult to comprehend fully. If your relative is willing to talk about it, you may be able to understand more by discussing the experience. Many people with schizophrenia lack insight into their illness, however, and are unable to talk about a problem they don't believe exists. Reading books and watching videos of first-person accounts of schizophrenia can be illuminating (see the Resources section at the end of Chapter 2).


Approximately 1 in 100 people (1%) develops schizophrenia at some point during her lifetime. In the United States, 2–3 million persons have the illness. Schizophrenia occurs in men and women of all races, social classes, religions, and cultures. Some research has indicated that schizophrenia is more common in some cultures than others, but most researchers have found the rate fairly similar across cultures. Schizophrenia is, however, more likely to develop in those living in poverty, among ethnic/racial minorities (rates are slightly higher in African Americans, Afro-Caribbeans in Great Britain, and Dutch Antillean and Surinamese immigrants in Holland), and in urban areas. In all these cases, the higher incidence may occur because of interactions between biological factors responsible for the illness and environmental stress.

The cost of treating schizophrenia, to both families and society, is very high. More hospital beds are occupied by persons with schizophrenia than any other psychiatric illness. Most of the people in state psychiatric hospitals have this diagnosis. Approximately one-fifth of all chronic disability (including both physical and mental illnesses) is due to schizophrenia. The majority of people with schizophrenia are unable to live independently and live either with relatives or in supervised community residences. About 10% of all homeless individuals have schizophrenia.

How Schizophrenia Develops

Schizophrenia usually develops sometime during late adolescence or early adulthood, most often between the ages of 16 and 30, with women developing the illness at a slightly later age than men. Schizophrenia rarely develops after the age of 35. Childhood schizophrenia (onset before puberty) is rare and considered a different disorder. This book is intended for families with a relative who developed schizophrenia in adolescence or adulthood.

The onset of schizophrenia usually follows a gradual decline in functioning, including the ability to socialize and enjoy life. The earliest signs of schizophrenia often include depression, lack of pleasure in daily activities, and social withdrawal. Problems in cognition (thinking) are also common, such as not being able to focus when reading, finding math more difficult, forgetting things more easily, and not making logical connections as easily—all problems that can interfere with school, work, and friendships. Usually some time after these problems have developed the person begins to experience psychotic symptoms, such as hallucinations and delusions, which often lead to treatment and possibly hospitalization. The development of schizophrenia may take place over months or even years.

At first you may not have recognized these changes, or you may have attributed them to a "stage" that your relative was going through or to normal adolescent behavior. When families do recognize that something is wrong and seek professional advice, they may be told that their relative's behavior is normal and they need not worry. Many professionals who don't work with people who are seriously mentally ill are not trained to recognize the symptoms of schizophrenia. However, even professionals who are trained to detect schizophrenia often find it difficult to diagnose this illness during its earliest stages.

The question of whether people who develop schizophrenia differ from others in childhood or adolescence, before they become ill, has intrigued researchers for decades. The answer is both yes and no. Many people who develop schizophrenia were well adjusted before they became ill. Among those we personally know with schizophrenia are a high school class valedictorian, a virtuoso cellist who soloed with a major city orchestra, and a writer and illustrator who published his work in high school.

However, some individuals who develop schizophrenia are less well adjusted before they become ill, and these people's difficulties often date back to childhood. Two patterns of maladjustment have been described. Some people are unusually withdrawn before developing schizophrenia, have few friends growing up, and have few or no intimate relationships with others, such as a steady boyfriend or girlfriend. These social problems that started early in life often persist at a more severe level after the onset of schizophrenia. The second pattern of maladjustment involves disruptive behavior problems that first appear in childhood—typically hyperactivity, attention problems, conduct disorder, and impulsivity. These problems interfere with academic and social functioning and may also persist into adulthood.


Excerpted from The Complete Family Guide to Schizophrenia by Kim T. Mueser, Susan Gingerich. Copyright © 2006 The Guilford Press. Excerpted by permission of The Guilford Press.
All rights reserved. No part of this excerpt may be reproduced or reprinted without permission in writing from the publisher.
Excerpts are provided by Dial-A-Book Inc. solely for the personal use of visitors to this web site.

Meet the Author

Kim T. Mueser, PhD, a clinical psychologist, is Executive Director of the Center for Psychiatric Rehabilitation at Boston University. His clinical and research interests include the treatment of schizophrenia and posttraumatic stress disorder and the diagnosis and treatment of people with multiple disorders. He has published extensively and lectures often on the topic of psychiatric rehabilitation.

Susan Gingerich, MSW, is a clinician and consultant with more than 20 years of clinical experience working with people who have severe mental illness and their families. She has an independent practice in Philadelphia.

Dr. Mueser and Ms. Gingerich have coauthored four books.

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