Schizophrenia For Dummies E-Book

Jerome Levine

• Herausgeber: John Wiley & Sons
• Kategorie: Ratgeber
• Sprache: Englisch
• Veröffentlichungsjahr: 2008

Seitenzahl: 611

Beschreibung

Practical tools for leading a happy, productive life Schizophrenia is a chronic, severe, and disabling mental disorder that afflicts one percent of the population, an estimated 2.5 million people in America alone. The firsthand advice in this reassuring guide will empower the families and caregivers of schizophrenia patients to take charge, offering expert advice on identifying the warning signs, choosing the right health professional, understanding currently available drugs and those on the horizon (as well as their side effects), and evaluating traditional and alternative therapies.

Leseprobe

Schizophrenia For Dummies®

Table of Contents

Introduction

About This Book

Conventions Used in This Book

What You’re Not to Read

Foolish Assumptions

How This Book Is Organized

Part I: Understanding Schizophrenia

Part II: Finding Out What’s Wrong and Getting Help

Part III: Treating Schizophrenia

Part IV: Living with Schizophrenia

Part V: The Part of Tens

Icons Used in This Book

Where to Go from Here

Part I: Understanding Schizophrenia

Chapter 1: Understanding Schizophrenia: The Big Picture

Defining Schizophrenia

What schizophrenia is

Who gets schizophrenia

What causes schizophrenia

The Symptoms of Schizophrenia

Dispelling the Myths Associated with Schizophrenia

Finding Out Whether Your Loved One Has Schizophrenia

Getting a diagnosis

Ruling out other explanations

Improving the Lives of People with Schizophrenia

Medication

Psychosocial treatments

Family psychoeducation

Peer support and mutual self-help

Basic support: Housing, financial aid, and healthcare

Recognizing the Challenges That Remain

Holding On to Hope: The Good News about Schizophrenia

Chapter 2: Causes and Risk Factors

Searching for a Reason

Looking at the human brain

Separating the myths from reality

Looking at the Respective Roles of Nature and Nurture

Nature: Focusing on your family tree

Nurture: Looking at environmental factors

Finding Out More about Risk Factors by Looking at Individual Differences

What Science Still Doesn’t Know

Chapter 3: Suspecting Schizophrenia

Recognizing the Symptoms and Signs of Schizophrenia

Positive symptoms: What’s there

Negative symptoms: What’s missing

Cognitive symptoms: Changes in mental functioning

Other disturbing symptoms and behaviors

Knowing Why Diagnosing Schizophrenia Is Tricky

When to Worry: The Warning Signs

Taking Action: Getting Treatment for Your Loved One Right Away

Part II: Finding Out What’s Wrong and Getting Help

Chapter 4: Getting a Diagnosis

Understanding How Diagnoses Are Made

Diagnosis: Giving a name to a set of symptoms

Inside the Diagnostic and Statistical Manual: The psychiatric bible

Looking for Schizophrenia

The elements of a psychiatric interview

Looking at the criteria for schizophrenia

Describing different types of schizophrenia

The Great Imposters: Ruling Out Other Mental Conditions

Schizoaffective disorder

Bipolar disorder

Severe depression

Substance use and abuse

Personality disorders closely linked to schizophrenia

Receiving the Diagnosis of Schizophrenia

Accepting the diagnosis

Denying the diagnosis

Predicting the Course of the Illness

Factors that predict a better course

Predictors of poorer outcomes

Seeking a Second Opinion

When to get a second opinion

How to find a second opinion

Going for a second opinion

Chapter 5: Assembling a Healthcare Team

Putting Together a Healthcare Team

Your First Priority: Finding and Interviewing a Good Psychiatrist

Who’s on first?

Looking for a specialist in serious mental illness

Starting your search

Preparing for the first meeting: Questions to ask

Meeting a psychiatrist: What to expect

Identifying Other Members of the Team

Psychologists

Social workers

Psychiatric nurses

Some additional members of the team

Coordinating Treatment and Care

Redrafting the Team: When Things Aren’t Working

Spotting the signs of team dysfunction

Working to improve your team

Chapter 6: Beginning Treatment

Starting a Long and Complicated Process

Putting the what if’s and why’s behind you

Developing a positive approach

Getting comfortable in an uncomfortable setting

Drawing On Local Resources

Scouting out local hospitals

Connecting with community services

Finding other resources in the community

Trying Different Treatments to Find What Works

Finding a psychiatric medication that works for your loved one

Considering therapies in addition to medications

Treating schizophrenia and substance abuse

What to Do If Your Loved One Won’t Accept the Diagnosis

Treatment Considerations for Special Populations

Children

College students

People with schizophrenia and co-occurring substance abuse problems

Older adults

Women

Cultural variations

Chapter 7: Paying for Your Loved One’s Care

Paying for Care

Private insurance

Public services for the uninsured or underinsured

Veterans’ benefits

Entitlement programs

College mental healthcare

Clinical studies and trials

Working with Schizophrenia: Your Legal Rights on the Job

The Americans with Disabilities Act

The Family and Medical Leave Act

Planning for Your Loved One’s Care after You’re Gone

Part III: Treating Schizophrenia

Chapter 8: Medication and Other Medical Approaches

Antipsychotic Medications

Understanding how medications work on the brain

Introducing first-generation medications

Moving on to a second generation of meds

Following treatment guidelines

Starting on an Antipsychotic Medication

Recognizing the reason for trial and error

Selecting the proper dose

Choosing the form of medication: Tablets, pills, liquids, or injections

Deciding on dosing schedules

Managing Medication Adjustments

Switching and adding medications

Combining medications

Coping with Common Side Effects

Movement disorders

Weight gain

Metabolic problems

Other side effects

Other Classes of Medications Used to Treat Symptoms

Antidepressants

Mood stabilizers

Antianxiety medications

Adhering to Medications

Why people refuse to take or stop taking medication

What you can do to ensure your loved one takes his medications

When Medication Doesn’t Seem to Work

Chapter 9: Psychosocial Approaches

Understanding Psychosocial Therapies

Individualizing a plan for treatment

Understanding what psychosocial rehabilitation can do

Looking at Individual Therapies

Psychodynamic therapy

Supportive therapy

Cognitive behavioral therapy

Getting Involved in Group Therapies

Group psychotherapy

Self-help groups

Supporting the Whole Family

Family psychoeducation

Family support organizations

Considering Cognitive Remediation

Expanding Psychosocial Options

Chapter 10: Finding Help and Hope through Research

Understanding the Process of Research

Looking at Clinical Trials and How They Work

Seeing how clinical trials are conducted

Deciding whether to participate in clinical trials

Finding the right trial for your loved one

New and Promising Directions in Research

New directions in drug discovery

Other new technologies

Opening New Windows into the Brain

Psychosocial and Other Treatment Research

Evaluating Complementary and Alternative Treatments

Omega-3 fatty acids

Antioxidant vitamins

Vitamin E

N-methylglycine

Acupuncture

The Risks of Unproven Treatments

Keeping Abreast of Research via the Internet — Wisely

Part IV: Living with Schizophrenia

Chapter 11: Schizophrenia and the Family

Adjusting to the Diagnosis

Staying positive and optimistic

Avoiding the family blame game

Breaking the News to the Family

Deciding who to tell

Knowing what to say

Deciding how much to tell

When your family is unsupportive

Considering the Challenges of Caregiving

Accepting the job nobody wants

Staying home or coming home again

Remembering the demands and rewards of caregiving

Avoiding caregiver burnout

Keeping the Whole Family Safe

Siblings and Schizophrenia

Keeping other kids in the loop

Dealing with sibling fears

When a Spouse or Partner Has Schizophrenia

Considering whether you can still be a couple

Helping your kids understand what’s happening

Working Collaboratively with Professionals

Planning for the Future

Chapter 12: Developing Coping Skills

Helping Your Loved One Live with Others

Understanding the unique stress factors of mental illness

Improving communication skills

Reducing stress

Setting realistic limits

Recognizing the role of negative symptoms

Handling unrealistic thinking

Defusing conflicts

Handling Troublesome Behaviors

Sleep disturbances

Bizarre behaviors in public

Fostering Independence

Seeking Support for You and Your Loved One with Schizophrenia

Chapter 13: Housing Choices: Figuring Out Where to Live

Recognizing the Challenges in Finding Housing

The financial cost

The scarcity of subsidized housing

Lack of continuity

Living at Home

Specialized Housing Options

Searching for housing

Making sense of the options

Starting the Conversation: Questions to Discuss with Your Loved One

Evaluating Residential Care

Chapter 14: Coping with Crises

Accepting Crises as Part of Schizophrenia

Being Prepared Before a Crisis Occurs

Keeping essential information in a central location

Surveying crisis resources before you need them

Recognizing the Signs That Something Is Wrong

Noticing a downward spiral

Spotting the signs of an acute crisis

Calling for Professional Help

Knowing Whether Hospitalization Is Necessary

The decision to hospitalize

What to bring with you for hospital admission

Alternatives to hospitalization

Reducing the Risk of Suicide

Dealing with Local Law Enforcement

When to call the police

What to do when a person with mental illness is arrested

Mentally Ill and Missing

Advance Directives: Helping People Decide for Themselves

Chapter 15: People Are More Than Patients: Addressing the Needs of the Whole Person

Overcoming Negative Expectations

Achieving the Goals of Recovery

Breaking Through the Roadblocks

Experiencing long delays in getting treatment

Having no place to go in a crisis

Looking at mental illness as a crime

Being over-represented among the downtrodden

Receiving substandard healthcare

Dealing with a complex treatment system

Experiencing gaps between what we know and what we do

Facing pervasive stigma and discrimination

Not having enough friends

A Call to Action

Part V: The Part of Tens

Chapter 16: Ten Myths about Schizophrenia You Can Forget

Myth #1: Schizophrenia Isn’t a Brain Disorder

Myth #2: A Person with Schizophrenia Has a “Split Personality”

Myth #3: Schizophrenia Is Caused by Bad Parenting

Myth #4: Schizophrenia Is Untreatable

Myth #5: All People with Schizophrenia Are Violent

Myth #6: People with Schizophrenia Are Just Lazy

Myth #7: People with Schizophrenia Are Loners Who Don’t Want to Have Friends

Myth #8: People with Schizophrenia Are Stupid

Myth #9: When People with Schizophrenia Start to Feel Better, They Can Stop Taking Medication

Myth #10: You Should Never Tell Anyone That Your Loved One Has Schizophrenia

Chapter 17: Ten Tips for Helping Families and Friends Cope and Come Out on Top

Select Your Team and Choose a Captain

Understand Your Loved One’s Diagnosis and Plan of Treatment

Become the Archivist of Your Loved One’s History

Feel Free to Get a Second Opinion

Oversee Medication Adherence

Become an Expert

Don’t Neglect Yourself and the Rest of Your Family

Familiarize Yourself with the Signs of Relapse

Remain Ever Hopeful — With Good Reason

Give Back

Chapter 18: Ten Ways to Avoid Relapse

Staying on Meds

Considering Depot Medication

Recognizing Warning Signs

Being Alert to and Avoiding Changes in Eating or Sleeping Patterns

Recognizing Your Loved One’s Unique Warning Signs

Decreasing Alcohol Use and Avoiding Street Drugs

Building an Open and Trusting Relationship with Your Loved One

Reducing and Minimizing Stress

Planning Ahead

Hanging in There

Appendix: Resources

For information on schizophrenia

For locating clinicians or care in your community

For information on medications and medication-assistance programs

For self-help and family or peer support

Schizophrenia For Dummies®

by Jerome Levine, MD, and Irene S. Levine, PhD

Schizophrenia For Dummies®

Published byWiley Publishing, Inc.111 River St.Hoboken, NJ 07030-5774www.wiley.com

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Published simultaneously in Canada

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About the Authors

Jerome Levine, MD: Jerome Levine is a board-certified psychiatrist whose research and clinical career has spanned almost 50 years. For a major portion of that time, Dr. Levine served as chief of psychopharmacology at the National Institute of Mental Health. There, he worked both nationally and internationally to help design, manage, and conduct much of the federally supported research that serves as the foundation for current approaches to the pharmacologic treatment of schizophrenia and other serious mental disorders.

After leaving the federal government, Dr. Levine joined the faculty of the University of Maryland Department of Psychiatry and the Maryland Psychiatric Research Center. Both settings treat and carry out treatment studies of hospitalized and community-based individuals diagnosed with schizophrenia. In Maryland, he also directed a program training early-career psychiatrists to become research psychiatrists.

In 1994, Dr. Levine moved to New York State, where he joined the faculty of the Department of Psychiatry of the New York University School of Medicine as a professor of psychiatry, and was appointed deputy director of the NYS Nathan S. Kline Institute for Psychiatric Research. He oversees research studying the causes, pathophysiology, and treatment of schizophrenia at basic, translational, and applied clinical levels.

Dr. Levine’s residency training was at the State University of New York at Buffalo Department of Psychiatry and at St. Elizabeth’s Hospital in Washington, D.C. In addition, he has served on the faculty at the U.S. Public Health Service Narcotic Hospital in Lexington, Kentucky; at the Johns Hopkins Department of Psychiatry in Baltimore, Maryland; and at the University of Pisa Department of Psychiatry in Italy.

He has published numerous papers and books in the scientific literature and is a life fellow of the prestigious American College of Neuropsychopharmacology. In addition to being listed in Who’s Who in America, Dr. Levine was awarded the American Psychiatric Association Hofheimer Research Prize and the Distinguished Leader in Research Award from the National Alliance on Mental Illness of New York State.

Irene S. Levine, PhD: Irene Levine has a doctoral degree in clinical psych-ology as well as extensive experience working in the public mental health system at local, state, and national levels. She began her career as a staff psychologist and treatment team leader at Creedmoor Psychiatric Center and left to develop and direct two nonprofit psychosocial rehabilitation programs in Queens and Suffolk counties in New York.

For a period of more than 15 years, Dr. Levine held senior management roles at the National Institute of Mental Health (NIMH) and the Substance Abuse and Mental Health Services Administration (SAMHSA) in Rockville, Maryland. She was one of the architects of the NIMH Community Support Program, created and directed the NIMH Program for the Homeless Mentally Ill, and served as the first deputy director of the SAMHSA Center for Mental Health Services.

In 1994, Dr. Levine joined the Nathan S. Kline Institute for Psychiatric Research in Orangeburg, New York, where she directs communications and serves as the institute’s liaison to families. She holds a faculty appointment as a professor of psychiatry at the New York University School of Medicine. She has lectured locally, nationally and internationally about the needs of families of individuals with severe mental illnesses, such as schizophrenia and major mood disorders.

For the past ten years, Dr. Levine has also been a prolific, award-winning freelance journalist and author, whose credits include some of the nation’s top magazines and newspapers. She writes on mental health as well as a wide range of other health and lifestyle topics, and is currently completing a book on female friendships for Overlook Press (2009). She is a member of the American Psychological Association, the National Alliance on Mental Illness, the National Association of Science Writers, the Association of Healthcare Journalists, the American Medical Writers Association, the Authors Guild, and the American Society of Journalists and Authors.

Dedication

We dedicate this book to all the courageous individuals with serious mental illness and their families that we have met through the years, who have taught us invaluable lessons that we never learned in school. We also dedicate this book to the individuals who volunteer as research participants in the interest of helping others learn about the causes of and treatments for schizophrenia.

This book is also dedicated to our own families who have enriched our lives in ways too numerous to mention, and especially to our son, Andrew, who has been an ongoing source of pride as well as 24/7 technical computer support.

Finally, this book is dedicated to the memory of Max Schneier, one of the earliest pioneers of the family advocacy movement, who taught us about the importance of listening to the wisdom of family members.

Authors’ Acknowledgments

We would like to acknowledge some of our professional colleagues, many of them our personal friends, who have dedicated their lives to improving treatment and care for individuals with schizophrenia. The knowledge upon which this book is based is derived, in no small measure, from their contributions. They include: MaryJane Alexander, MD; Thomas Ban, MD; Robert Cancro, MD; William T. Carpenter, MD; Giovanni B. Cassano, MD; Leslie Citrome, MD, MPH; Jonathan O. Cole, MD; Areta Crowell, PhD; Lynn DeLisi, MD; Joel Elkes, MD; Laurie Flynn; Risa Fox, MSW; Alan Gelenberg, MD; Howard Goldman, MD; Michael Hogan, PhD; Ron Honberg, JD; Samuel Keith, MD; Daniel Javitt, MD, PhD; John Kane, MD; Harold Koplewicz, MD; Alan Leshner, PhD; Robert P. Liberman, MD; Jeffrey Lieberman, MD; Linda Ligenza, MSW; Arnold M. Ludwig, MD; Dolores Malaspina, MD; Herbert Meltzer, MD; Stuart Moss, MLS; Fred Osher, MD; Herbert Pardes, MD; Nadine Revheim, PhD; Linda Rosenberg, MSW; Nina R. Schooler, PhD; Steven S. Sharfstein, MD; John Talbott, MD; Fuller Torrey, MD; Judith Turner-Crowson; and Peter Weiden, MD. Although these individuals have influenced our writing and our careers, such an eclectic group would not necessarily agree with everything we’ve written.

We are profoundly indebted to the members of the National Alliance on Mental Illness, especially Rena Finkelstein, Helen Klein, and other members of NAMI-FAMILYA of Rockland County, New York, for their inspiration and collaboration over the years.

Lastly, we appreciate the support of Michael Lewis, of Wiley Publishing, and Elizabeth Kuball and Sharon Perkins, who shepherded us through this project. Thanks also to our agent, Marilyn Allen, who served as a matchmaker and cheerleader.

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Introduction

Schizophrenia affects as many as 1 in 100 Americans over their lifetime and is twice as common as HIV/AIDS. Yet few other diseases are shrouded in quite as much misinformation, lack of information, and secrecy as schizophrenia is. On average, it takes more than eight years between the time symptoms first appear and the time a person is diagnosed and treated for the disorder. Pervasive stigma keeps most people in the dark until the disorder becomes up close and personal. As a result, when someone you love is diagnosed with schizophrenia — a no-fault, equal-opportunity brain disorder — you’re not sure where to turn or who to tell. Initially, most people feel ashamed, bewildered, and alone.

During our careers working in various research, policy, and clinical roles at federal, state, and local levels, people with schizophrenia and their loved ones often asked us questions. We always tried to provide simple, straightforward answers, but we never have enough time to present the big picture — to answer their questions in a larger, more understandable context.

So we decided to write this book. This book distills what we’ve learned and read over our combined 85+ years in the field of mental health — and just as important, the valuable lessons we’ve been taught by patients and families during that time. In these pages, we give you immediate access to tools and information that otherwise might take you a much longer time to acquire.

We strongly believe that only through improved public awareness and enhanced mental-health literacy can society reverse the stigma and discrimination that stands in the way of finding cures and helping people with schizophrenia lead the full lives they deserve.

About This Book

Our goal in writing this book is to help demystify a long-misunderstood illness. We want this book to be your go-to primer to better understand:

What schizophrenia is and what it is not

What causes schizophrenia and what does not

Why and how diagnoses are made

How schizophrenia can be treated

What barriers exist to treatment and care, and how you and your loved one can overcome them

How consumers, families, friends, and professionals can work together to enhance the chances for recovery and quality of life for people with schizophrenia

What other resources are available to help patients and their loved ones cope with the disorder

Conventions Used in This Book

We don’t use many conventions in this book, but to help you access the information you need we do use the following:

Whenever we introduce a new technical term, we italicize it and then define it.

Web addresses and e-mail addresses appear in monofontto help them stand out. When this book was printed, some Web addresses may have needed to break across two lines of text. If that happened, rest assured that we haven’t put in any extra characters (such as hyphens) to indicate the break. So, when using one of these Web addresses, just type in exactly what you see in this book, pretending as though the line break doesn’t exist.

We try to avoid language that is in any way demeaning or stigmatizing to people living with schizophrenia. In recent years, the person affected with schizophrenia has been variously called a patient,consumer,service recipient, or survivor — and the term that’s preferred changes over time, and can vary from one person to the next. We tend to think of people with schizophrenia as people, but those in the helping professions (psychiatry, psychology, social work, nursing, rehabilitation, and so on) have a long tradition of calling the people they work with patients. Accepting the old adage that you can’t please everyone all the time, we used the terms that flowed most comfortably for us as we wrote — although we tried to vary our language. We hope that our words don’t offend or interfere with our message.

We try to vary the pronouns we used based on gender — for example, not always referring to doctors as he and not always referring to people with schizophrenia as she. We didn’t keep a running tally of the gender pronouns we used, but we hope you’ll find it a fair balance.

We often refer to the person with schizophrenia as your loved one, because this book is primarily geared toward people who are caring for, or closely connected to, someone with the disorder — and because we recognize that you may not be family, but your love is just as strong.

We generally preferred to use the term medications as opposed to drugs, because many people confuse the latter term with street drugs or drugs of abuse (like heroin, cocaine, and marijuana). That said, we do alternate use of the terms in this book — rest assured, when we use the term drugs, we’re referring to prescribed medications.

Also, every medication has both a generic name and a tradename (also called a brand name). The trade, or brand name, is the one you hear advertised on commercials (for example, Lipitor is the trade name of a medication used to treat high cholesterol, and the generic name is atorvastatin calcium). We give you both the generic and trade names when referring to medications.

What You’re Not to Read

You don’t have to read everything in this book to get the information you need. Here are some pieces of the puzzle you can safely skip:

Anything marked by a Technical Stuff icon: Check out the “Icons Used in This Book” section, later in this Introduction, for more on this and other icons.

Sidebars: Sidebars are boxes of gray text that appear throughout this book. You’ll find interesting information in sidebars, but nothing essential to understanding the topic at hand.

The copyright page: If you like reading fine print, have at it. Otherwise, trust us: You don’t need to know what’s there.

Foolish Assumptions

In writing this book, we assumed the following about you:

You may be caring for someone who has symptoms associated with schizophrenia or has been diagnosed with schizophrenia.

You may be a parent, family member, friend, or colleague of someone who has schizophrenia, and you want to understand more about the disorder and what you can do to help.

You may be a mental-health or medical professional reading the book so that you can recommend it to loved ones seeking more information about schizophrenia.

Although we haven’t written this book specifically for the person with schizophrenia, if you have schizophrenia and want more information on the disorder, you’ll find this book useful as well.

How This Book Is Organized

We’ve divided this book into five parts. Here’s what you’ll find in each.

Part I: Understanding Schizophrenia

In this part, we give you a broad overview of schizophrenia, separating what’s real from the myths and misperceptions. We describe the symptoms and unusual (and sometime disturbing) behaviors commonly associated with the disorder and explain how clinicians distinguish the symptoms of schizophrenia from those of other serious mental disorders. We describe the onset of the disorder, which can come on suddenly, seemingly out of the blue, or may make its appearance so gradually that it’s barely noticed.

Part II: Finding Out What’s Wrong and Getting Help

Getting a diagnosis is the first step in getting help. In this part, we explain how the diagnosis of schizophrenia is made and identify the different types of schizophrenia. We also give you tips on how to assemble a healthcare team for diagnosis and treatment, and what to do if things don’t seem to be functioning as smoothly as you would hope them to. Finally, we provide advice on starting treatment, including navigating the financial hurdles you’ll likely face in paying for care and dealing with your loved one’s potential lack of insight into the illness.

Part III: Treating Schizophrenia

Antipsychotic medications are the cornerstone of treatment for schizophrenia. This part explains how psychiatrists select a first medication, and how and why they make adjustments. We also provide advice about how your loved one can cope with common side effects and offer tips for encouraging your loved one to stick to her medication schedule. We explain the range of treatments for schizophrenia and fill you in on what’s known and unknown about complementary and alternative treatments. Finally, we identify new and promising directions in research and explain the benefits and risks of participating in clinical trials.

Part IV: Living with Schizophrenia

Schizophrenia presents challenges not only to the individual with the illness, but also to the people around them. Families need to stay positive and optimistic, and avoid blaming each other for the illness. In this part, we tell you how families can avoid burnout, work collaboratively with professionals, and acquire the coping skills they need in order to handle their loved one’s not-so-pleasant behaviors. This part also provides suggestions for finding decent affordable housing and for learning how to handle psychiatric crises to minimize their adverse impact. Finally, we define and explain the importance of recovery and meeting the needs of the whole person, which transcend treatment alone.

Part V: The Part of Tens

Every book in the For Dummies series includes a part called The Part of Tens, which offers helpful hints to empower readers. In Schizophrenia For Dummies, we debunk ten myths about mental illness, offer up ten tips for coping with your loved one’s disorder, and ten ways your loved one can avoid relapse.

Icons Used in This Book

Throughout the book, we use icons — little pictures in the margin — to highlight certain kinds of information. Here’s what the icons mean:

When we use the Remember icon, it means that we’re highlighting essential information that’s worth remembering.

Schizophrenia, like many other illnesses and disorders, is complex. When we get into the details that you don’t absolutely need to understand, we mark it with a Technical Stuff icon. You can safely skip these paragraphs without missing the point — or you can read them and find even more information.

The Tip icon highlights advice or pointers to help you cope with the symptoms and behavior associated with schizophrenia and to deal with the complexities of treatment. We’ve worked in mental health for years — think of these paragraphs as our insider tips on dealing with schizophrenia.

The Warning icon signals potential risks and dangers. You won’t see it used often, but when you do see it, be sure to heed the warning.

Where to Go from Here

If you’re the kind of person who reads the morning newspaper from front to back, you’ll probably want to start with Chapter 1 of this book and read straight through to the index — in fact, you’ve probably already read the title page, copyright information, table of contents, and everything else that comes before this Introduction. However, you don’t need to read this book in sequence to get a lot out of it. If you’re coping with a particular issue or problem, use the table of contents and the index to guide you to the specific portion of the book that addresses your questions. For example, if you think your loved one may have schizophrenia, but he hasn’t yet been diagnosed, turn to Chapter 3. If you’re looking for doctors for your loved one, Chapter 5 is the place to start. If you’re looking for a place for your loved one to live, Chapter 13 has the information you need. Use this book in whatever way works best for you.

Part I

Understanding Schizophrenia

In this part . . .

We kick things off by giving you an overview of schizophrenia — a no-fault, equal-opportunity disease of the brain that strikes teenagers and young adults in the prime of their lives. Here we dispel some of the myths and misunderstandings associated with the disorder, which have led to unnecessary blame and social stigma. We also show you how to recognize the early warning signs of the disease, outline its risk factors, and cover the range of symptoms and behaviors that characterize schizophrenia. Finally, we tell you how doctors are able to differentiate schizophrenia from other mental disorders with seemingly overlapping symptoms, and discuss the fact that — although treatments have vastly improved the lives of people with schizophrenia and their families — much more remains to be learned.

Chapter 1

Understanding Schizophrenia: The Big Picture

In This Chapter

Understanding what schizophrenia is, who gets it, and what the symptoms are

Looking at how schizophrenia is treated

Getting the support you need

Schizophrenia. If someone you know has been recently diagnosed with schizophrenia, the very word may evoke a cascade of intense feelings: sadness, fear, confusion, shame, and hopelessness. You may ask yourself, how did this happen? Why did it happen to my loved one? It’s natural to have these emotions. But take a deep breath. You need to know that the diagnosis isn’t as catastrophic as it first appears to be.

Most people know very little about schizophrenia until it hits home, and what they do know is likely to be based on old myths and misperceptions. They need to find out as much accurate information as they can about this complex and misunderstood disease. Knowledge is power — and knowing what schizophrenia is (and isn’t) is the first step toward moving beyond your worst fears.

In this chapter, we give you an overview of the brain disorder known as schizophrenia: what it is, who gets it, and what treatments are available. We dispel some common myths about the disorder and tell you how schizophrenia differs from other mental illnesses. Finally, we tell you the good news about the disorder and why you and your loved one have every reason to remain hopeful that recovery is possible.

Schizophrenia is a serious, long-term, life-altering illness, so it’s natural to be stunned upon hearing the diagnosis. You may even feel paralyzed, not knowing what to do next. But the first step is clear: You need to gather all the information you can to make sure your loved one is getting the best possible treatment and supports available to him.

Defining Schizophrenia

You’re reading this book, which means you probably have a personal interest in schizophrenia — either you or someone close to you has been diagnosed with the disease or you’re worried about someone showing signs or symptoms. In this section, we fill you in on what’s currently known about schizophrenia and the way the disorder affects the people who have it, as well as their loved ones.

What schizophrenia is

Schizophrenia is a brain disorder characterized by a variety of different symptoms, many of which can dramatically affect an individual’s way of thinking and ability to function. Most scientists think that the disorder is due to one or more problems in the development of the brain that results in neurochemical imbalances, although no one fully understands why schizophrenia develops.

People with schizophrenia have trouble distinguishing what’s real from what’s not. They are not able to fully control their emotions or think logically, and they usually have trouble relating to other people. They often suffer from hallucinations; much of their bizarre behavior is usually due to individuals acting in response to something they think is real but is only in their minds.

Unfortunately, because of the way schizophrenia has been inaccurately portrayed in the media over many decades, the illness is one of the most feared and misunderstood of all the physical and mental disorders.

Schizophrenia is a long-term relapsing disorder because it has symptoms that wax and wane, worsen and get better, over time. Similar to many physical illnesses (such as diabetes, asthma, and arthritis), schizophrenia is highly treatable — although it isn’t yet considered curable.

But the long-term outcomes of schizophrenia aren’t as grim as was once believed. Although the disorder can have a course that results in long-term disability, one in five persons recovers completely. Some people have only one psychotic episode, others have repeated episodes with normal periods of functioning in between, and others have continuing problems from which they never fully recover.

Who gets schizophrenia

No group is risk-free when it comes to schizophrenia, but some people are more likely than others to develop the disorder. The following statistics may surprise you:

Schizophrenia is more common than you might think. About 1 out of 100 people develop schizophrenia over the course of their lifetime. Schizophrenia is twice as common as Alzheimer’s disease or HIV/AIDS, five times as common as multiple sclerosis, and six times as common as Type 1 (insulin-dependent) diabetes.

Although new cases of schizophrenia are somewhat rare, the number of individuals with the disorder remains relatively high because schizophrenia is a chronic disorder that often lasts for an extended period of time.

Schizophrenia affects both sexes equally and is found among people of all races, cultures, and socioeconomic groups around the world.

Although schizophrenia is more likely to affect people between the ages of 17 and 35 (the onset tends to be earlier in men than in women), it can begin in children as young as age 5 or have a late onset in a person’s 50s, 60s, or 70s.

Childhood-onset schizophrenia is extremely rare, affecting about 1 in 40,000 children. Only 1 in 100 adults now diagnosed with the disorder had symptoms before the age of 13. Because the disorder tends to surface more gradually in children, it often goes unnoticed. Chapter 2 lists some of the early red flags to watch for if you suspect that something may be wrong.

An earlier onset is often indicative of poorer outcomes because the disorder can interfere with education, development, and social functioning. On the other hand, early recognition can help improve outcomes and minimize disability.

Famous people with schizophrenia

Many accomplished and successful people are reported to have had schizophrenia. Here’s a short list:Lionel Aldridge (1941–1998), professional football player on the Green Bay Packers in the 1960sSyd Barrett (1946–2006), founding member of the band Pink FloydJim Gordon (1945–), drummer and member of Derek and the DominoesPeter Green (1946–), guitarist and founder of the band Fleetwood MacTom Harrell (1946–), jazz musicianJack Kerouac (1922–1969), author of On the RoadMary Todd Lincoln (1818–1882), first lady of the United States, wife of Abraham LincolnJohn Nash (1928–), mathematician, Nobel Prize winner, subject of the film A Beautiful MindVaslav Nijinsky (1889–1950), ballet dancerBrian Wilson (1942–), bass player and singer in the band The Beach Boys

Comparing the schizophrenic brain to the normal one

New imaging techniques — like magnetic resonance imaging (MRI) and positron emission tomography (PET) — have opened virtual windows into the brain. Scientists have been able to visualize the living brain and discern some of the differences in the structure and function of the brains of people with schizophrenia and the brains of their normal peers. Some of the differences observed in the brains of people with schizophrenia areEnlarged ventricles: Fluid-filled cavities within the brainA loss of gray matter: Brain tissue that is comprised of nerve cellsAbnormalities in white matter: Myelin-covered nerve fibers that serve as “wiring” connecting different parts of the brain In the rare cases where schizophrenia first appears in early childhood, differences have been found in the cortex of the developing brain. The cortex forms the surface of the brain.Functional magnetic imaging studies have enabled scientists to observe the brain while it’s performing various tasks. These studies have found that the brains of people with schizophrenia work differently — either harder or less efficiently — than those of people without the disorder. All these variations are meaningful, but when it comes to diagnosing a particular individual, science is not yet at the point where a diagnosis can be made based on imaging data.

What causes schizophrenia

Schizophrenia is a no-fault, equal-opportunity illness most likely caused by a number of factors, both genetic and environmental. Most scientists now accept a two-hit theory for the cause of schizophrenia, which suggests that the genetic susceptibility is compounded by one or more environmental factors:

Genetic susceptibility: Based on family genetic history, some people are more vulnerable to the disorder than other people are.

Environmental factors: In someone genetically predisposed, certain environment factors may come into play, such as:

• Physical trauma that occurs to the fetus during childbirth

• Oxygen-deprivation or some psychological or physical problem that occurs to the mother during pregnancy and affects the developing fetus

• Emotional stress, such as the loss of a parent or loved one during young adulthood

Although schizophrenia is genetically influenced, more than genetics is involved in its development. Studies of identical twins show that, if one twin develops schizophrenia, the other twin has only a 40 percent to 50 percent chance of also developing the illness. There’s also an increased risk among fraternal twins when one develops schizophrenia, the other has between a 10 percent and 17 percent chance, far less than that of identical twins. Having a parent with schizophrenia also increases a person’s risk of developing the disease, to about 10 percent. And if you have a sibling with the disorder — not your twin — you have a 6 percent to 9 percent chance of developing the disorder yourself.

Scientists still don’t know the precise causes of schizophrenia for any particular individual, yet family members and patients themselves tend to dwell on (or even obsess about) finding a “reason” or a “cause” for the illness. Although this instinct is a natural one, finding the precise cause or explanation is impossible, not to mention counterproductive — finding a reason doesn’t help treatment, and it often creates unnecessary and misplaced guilt, with one family member blaming another.

See Chapter 2 for a full discussion of the possible causes of schizophrenia.

The Symptoms of Schizophrenia

There are almost 300 named psychiatric disorders, and schizophrenia is one of them. Although many mental illnesses have symptoms that overlap, schizophrenia has a distinct pattern of symptoms. No two cases of schizophrenia look exactly the same, but most people with schizophrenia display three types of symptoms:

Positive symptoms:The term positive symptoms is confusing, because positive symptoms (as the term might suggest) aren’t “good” symptoms at all. They’re symptoms that add to reality, and not in a good way. People with schizophrenia hear things that don’t exist or see things that aren’t there (in what are known as hallucinations). The voices they hear can accuse them of terrible things and can be very jarring (for example, causing them to think that they’ve hurt someone or have been responsible for some cataclysmic world event).

People with schizophrenia can also have delusions (false beliefs that defy logic or any culturally specific explanationand that cannot be changed by logic or reason).For example, an individual may believe that there is a conspiracy of people driving red cars that follows his every movement. He will use the fact that there are red cars everywhere he goes as evidence that the conspiracy is real.

Negative symptoms: These symptoms are a lack of something that should be present; behaviors that would be considered normal are either absent or diminished. For example, people with schizophrenia often lack motivation and appear lazy. They may be much slower to respond than most other people, have little to say when they do speak, and appear as if they have no emotions, or exhibit emotions that are inappropriate to the situation. They may also be unable to get pleasure from the things that most people enjoy or from activities that once brought pleasure to them. Families often get frustrated when a relative with schizophrenia does nothing but sleep or watch TV — they wrongly attribute this behavior to the patient not being willing to assume responsibility or “pull himself up by his bootstraps.”

Negative symptoms are part and parcel of the illness for at least 25 percent of people with schizophrenia.

Cognitive symptoms: Most people with the disorder suffer from impairments in memory, learning, concentration, and their ability to make sound decisions. These so-called cognitive symptoms interfere with an individual’s ability to learn new things, remember things they once knew, and use skills they once had. Cognitive symptoms can make it hard for a person to continue working at a job, going to school, or participating in activities she may have enjoyed at one time.

In addition to the symptoms mentioned above, people with schizophrenia may also have sleep problems, mood swings, and anxiety. They may experience difficulties forming and maintaining social relationships with other people. They may look different enough that other people notice that something is very odd or strange about them and that they don’t quite look “normal.” They may have unusual ways of doing things, have peculiar habits, dress inappropriately (such as wearing a heavy coat or multiple layers of clothes in the summer), and/or be poorly groomed, which can discourage other people from getting involved with them.

See Chapter 3 for more about the differences in these types of symptoms.

Dispelling the Myths Associated with Schizophrenia

People wrongly associate the symptoms of schizophrenia with split or multiple personalities (like Dr. Jekyll and Mr. Hyde), antisocial behavior (similar to what we see in serial killers), and developmental disabilities. Others believe that schizophrenia is a character defect and that the individual could behave normally if he really wanted to.

Here are a few of the most common misconceptions about schizophrenia:

Schizophrenia is the same as a split or multiple personality. Schizophrenia is not the same as multiple personality, which is an exceedingly rare, totally different disorder that is now more commonly called a dissociative identity disorder. (Under stress, people with this disorder often assume different identities, each with different names, voices, characteristics, and personal histories.)

People with schizophrenia are violent. People with schizophrenia are more likely to be victims rather than perpetrators of crimes. Many people believe that most people with schizophrenia have a propensity for violence, but the reality is that most people with schizophrenia don’t commit violent crimes, and most violent criminals don’t have schizophrenia.

For example, serial killers (people who commit three or more subsequent murders) usually aren’t psychotic (out of touch with reality); they’re likely to be diagnosed with an antisocial personality disorder (a disorder in which people disregard commonly accepted social rules and norms, display impulsive behavior, and are indifferent to the rights and feelings of others).

However, people with untreated schizophrenia, who refuse to take medication and whose thinking is out of touch with reality are at increased risk of aggressive behavior and self-neglect. The risk of violence also increases if someone with schizophrenia is actively abusing alcohol or illicit drugs. For better or worse, the aggressive behavior is usually directed toward family or friends rather than toward strangers.

Poor parenting causes schizophrenia. For many years, clinicians were taught and actually believed that schizophrenia was caused by parents who were either too permissive or too controlling. The term schizophrenogenic mother was once used to describe such parents — the blame usually fell heavily on mothers because they tended to spend the most time with their offspring. Another outdated theory is the double-bind theory, which suggested that schizophrenia is due to inconsistent parenting, with conflicting messages.

These ideas were not based on controlled studies, and these theories no longer have credibility today.

Schizophrenia is a no-fault disorder of the brain.

People with schizophrenia are mentally retarded. Some people think that schizophrenia is synonymous with mental retardation (now called developmental disabilities). No. Like the general public, people with schizophrenia have a wide range of intellectual abilities. They may appear less intelligent because of the impaired social skills, odd behaviors, and cognitive impairments that are characteristic of schizophrenia. However, they’re not lacking in intelligence, and schizophrenia is distinct from developmental disabilities (physical and mental deficits that are chronic and severe and that generally begin in childhood).

Schizophrenia is a defect of character. Negative symptoms of schizophrenia give people the mistaken impression that those with the disorder are lazy and could act “normally” if they wanted to. This idea is no more realistic than suggesting that someone could prevent his epileptic seizures if he really wanted to or that someone could “decide” not to have cancer if he ate the right foods. What often appears as character defects are symptoms of schizophrenia.

When the negative symptoms of schizophrenia are persistent and primarily caused by schizophrenia, they’re referred to as deficit syndrome.

There’s no hope for people diagnosed with schizophrenia. Sixty years ago when people were diagnosed with schizophrenia, they were either kept at home behind closed doors by embarrassed and forlorn families who saw no other alternative, or consigned to long-term stays in distant state hospitals for care that was largely custodial (they weren’t treated — they were just taken care of). Other than using highly sedating drugs, doctors had few tools available to them to relieve the agitation and torment of their patients or to help restore their functioning.

In contrast to how things were in the past, schizophrenia is now considered highly treatable. Several generations of new medications and the emergence of new forms of therapies have enabled doctors to treat the symptoms of the large majority of patients with schizophrenia enabling them to live meaningful, productive lives in their communities.

For more myths about schizophrenia, check out Chapter 16.

Finding Out Whether Your Loved One Has Schizophrenia

Schizophrenia doesn’t always make its appearance in the same way. Sometimes its symptoms come on suddenly, seemingly out of the blue, and this can be very confusing or even shocking. A very common scenario is that a young person, previously described as an excellent student, standout athlete, or all-around great kid, goes off for college and suddenly calls home after a month or two to report that he’s being followed or has been targeted by an alien group. When the individual has had no prior history of a serious mental disorder, the onset of this disorder is called a first break or an acute psychotic break.

Other times, schizophrenia comes on gradually, or its symptoms are so subtle that the person simply hasn’t been diagnosed earlier. Often, it’s difficult for the individual and people around her to notice that anything is wrong (because they’ve come to accept what they view as the person’s quirky personality) until things further deteriorate and can no longer be ignored.

Families say that their relative never seemed “quite right”; the person may have had problems at school or work, problems relating to peers, and a history of odd or unusual behaviors. Then she suddenly exhibits delusions, hallucinations, or other signs indicating that she’s out of touch with reality. After that, the possibility of schizophrenia can no longer be ignored.

No matter how the scenario unfolds, the key is getting a diagnosis for your loved one and ruling out other possible causes for the symptoms you’re noticing. In the section below, we tell you how to do both.

Getting a diagnosis

If you have any suspicion that your loved one may have schizophrenia, it’s vitally important that he be seen by a mental-health professional as soon as possible. If the clinician is not a psychiatrist — maybe he’s a psychologist or social worker — he’ll likely suggest that your loved one be seen by an internist or general practitioner to make sure that the symptoms are not due to any underlying physical disorder (such as a brain tumor, epilepsy, or drug intoxication) and to rule out other medical explanations.

Unlike some physical illnesses, there’s no simple blood test or X-ray that can establish the diagnosis of schizophrenia. So the mental-health professional will interview your loved one and take a thorough history to help arrive at an accurate diagnosis. Often they will interview family members to round out their understanding of the patient’s history and functioning at home, and to solicit their assistance in filling in details that the patient may have forgotten or be hesitant to talk about.

When mental-health professionals make diagnoses of schizophrenia, they sometimes identify various subtypes of the disorder based on their characteristic symptoms. These subtypes include paranoid schizophrenia, catatonic schizophrenia, and undifferentiated schizophrenia (see Chapter 4 for more information on all these). These subtypes no longer hold the same diagnostic or prognostic (ability to predict the future) importance that they once did. Today, more emphasis is placed on designing treatment strategies that address positive, negative, and cognitive symptoms.

Early diagnosis is important — it leads to better outcomes. Even having a name for the disturbing symptoms people experience enables patients and those around them to better understand and cope with their situation.

Ruling out other explanations

After medical causes are ruled out and schizophrenia is suspected, your next step is for your loved one to see a psychiatrist — specifically, someone who is experienced in diagnosing and treating schizophrenia.

Finding a psychiatrist experienced in diagnosing and treating schizophrenia isn’t always easy. Two of the best sources of referrals are academic medical centers and family support groups. (For more on finding a psychiatrist for your loved one, check out Chapter 4.)

One of the reasons that diagnosing schizophrenia can be challenging is that its symptoms sometimes overlap with other mental disorders. Mental-health professionals determine whether a person has schizophrenia or some other psychiatric condition with similar or overlapping symptoms by doing what’s called a differential diagnosis. For example, to diagnose schizophrenia, some of the conditions psychiatrists rule out include

Mood disorders: People with schizophrenia can have mood swings, become depressed, or exhibit hypomanic (persistently elated or irritable) moods or behaviors. People with bipolar disorder or severe depression can have psychotic thoughts (such as delusions or hallucinations) that resemble those found in schizophrenia. But in schizophrenia, the thought disorder predominates over mood symptoms.

Schizoaffective disorder:Schizoaffective disorder, despite the name, isn’t a type of schizophrenia — instead, it’s a different diagnosis with a combination of thought and mood symptoms. The diagnosis is sometimes used when the symptoms of the disorder can’t be clearly categorized as either schizophrenia or a mood disorder.

Substance use and abuse: The symptoms associated with acute schizophrenia can be caused by drug-induced intoxication, especially from hallucinogenic drugs (like LSD), cocaine, or amphetamines. A significant proportion of people with schizophrenia use alcohol and/or other drugs to mask their symptoms and/or ease their anxiety about their symptoms and have co-occurring mental-health and substance-use disorders.

To determine whether psychotic symptoms are induced by drugs or a symptom of schizophrenia, a clinician may need to see the patient over time and observe the patient when she is not using drugs or alcohol.

Borderline personality disorder: People with borderline personality disorder often have moods that change on a dime, have conflicts with other people, act out inappropriately, or have impaired judgment. They may also behave in ways that hurt themselves (for example, deliberating cutting or burning themselves). However, it’s not common for people with borderline personalities to have hallucinations or cognitive impairments.

Sometimes an individual’s psychiatric diagnosis changes over time based on whichever symptoms appear to be most prominent at the time the person is seen. It doesn’t necessarily mean that the previous diagnosis was wrong.

Normal teenage behaviors and the diagnosis of schizophrenia

Not surprisingly, the teenage years have been called the “roller-coaster years” because of the ups and downs caused by surging hormones, and because adolescents are prone to engage in strange and risky behaviors. Many young people have mood swings, use and/or abuse alcohol, or maintain unusual sleep schedules (reversing day and night, or sleeping too little or too much). Because the onset of schizophrenia usually coincides with the late teenage years, schizophrenia is often missed and its symptoms are dismissed as behaviors of normal adolescence. It takes an experienced clinician to confirm or rule out a diagnosis of schizophrenia in teens, but some warning signs include the following:A dramatic decline in school performance: For example, excessive absences or failing subjects at which she once excelled. Having thoughts that often don’t make sense: For example, a teenager with schizophrenia may think his thoughts are being monitored by electronic equipment in the house or that his food is being poisoned. Being suspicious or paranoid: Lots of teenagers are “paranoid” that their parents are going through their things or spying on them, but that’s not what we’re talking about here. The suspiciousness or paranoia in a teenager with schizophrenia might lead him to believe that his room is bugged by the FBI.Staying isolated or not having friends: Not every teen is captain of the football team or homecoming queen — we’re not talking about popularity here. We mean having absolutely no friends — not even one — and never socializing with other kids or participating in school activities.Use of drugs and/or alcohol: Teenagers frequently experiment with drugs or alcohol, so if you find out your teen is doing either of these, that doesn’t mean he has schizophrenia. But if you see drug and alcohol use in conjunction with the other symptoms in this list, that can be evidence that he may have schizophrenia. Remember: Drug and alcohol use in teens is a serious problem whether they have schizophrenia or not, so if you suspect your teen may be drinking or doing drugs, be sure to get him help. Contact the federal government’s Center for Substance Abuse Treatment (CSAT) toll-free help line at 800-662-4357 or go to www.findtreatment.samhsa.gov for tips on where to start.Family history of mental illness: Genetics alone doesn’t cause schizophrenia, but if you have a family history of mental illness, and you’re noticing other symptoms in this list, your teen may have schizophrenia.

Improving the Lives of People with Schizophrenia

Since the 1950s, the mental-health profession has made marked advances in the treatment of schizophrenia. Now most people with schizophrenia are treated in the community as opposed to remaining in hospitals for long-term care. When individuals do need to be hospitalized, it’s usually for a brief period of time to stabilize their symptoms. In this section, we cover the range of treatments and supports that are essential to recovery.

Medication

Today, medication is considered the mainstay of treatment for most individuals with schizophrenia. However, medication alone isn’t enough — it’s more successful when combined with psychosocial (see the following section) interventions.

Antipsychotic medications — like medications used to treat many other chronic illnesses (such as diabetes, epilepsy, heart disease, and asthma) — control symptoms. They don’t provide a cure.

Good psychopharmacologists (psychiatrists who have training and experience in prescribing medications that are used to treat psychiatric illnesses) now are more likely to work along with individuals and families to find a medication regimen that will help keep positive symptoms under control. Also, today doctors are more likely to listen to patients who complain of adverse side effects and to modify doses or the type of medication accordingly, to encourage compliance. Finally, the availability of practice guidelines (summaries of best practices based on research evidence or professional consensus), developed by many professional organizations, have improved the overall state of the art of medication management.

Collaboration between a patient and doctor is less possible when a person with schizophrenia is acutely ill and unable to understand or remember what’s being discussed. The approach to medication management is a long-term one.

We cover medication options in Chapter 8.

Psychosocial treatments

Psychosocial treatments include psychological treatments, social approaches, and combined approaches that are especially helpful in restoring confidence and self-esteem, as well as in helping people with schizophrenia develop the skills they never acquired or lost as a result of their illness (which often curtails or interrupts an individual’s education or work).

Psychosocial treatments include social skills training, vocational counseling and job training, cognitive remediation (compensatory learning strategies that improve neuropsychological functions like memory, concentration, planning and organizing), and assistance with the activities of daily living. Psychological treatments include supportive psychotherapy (talk therapy) and cognitive behavioral therapy