Decade of the Brain
WHAT IS OCD?
Obsessive-compulsive disorder (OCD), one of the anxiety disorders, is
a potentially disabling condition that can persist throughout a
person's life. The individual who suffers from OCD becomes trapped in
a pattern of repetitive thoughts and behaviors that are senseless and
distressing but extremely difficult to overcome. OCD occurs in a
spectrum from mild to severe, but if severe and left untreated, can
destroy a person's capacity to function at work, at school, or even in
The following three case histories are typical for those who suffer
from obsessive-compulsive disorder--a disorder that can be effectively
- Isobel is intelligent, but she is failing her first period class
in biology because she is either late to class or absent. She
gets up at five o'clock, hoping to get to school on time. The
next three hours are spent taking a long shower followed by
changing clothes repeatedly until it "feels right." She finally
packs and repacks her books until they are just right, opens the
front door and prepares to walk down the front steps. She goes
through a ritual of pausing on each step for a particular length
of time. Even though she recognizes her thoughts and behaviors
are senseless, she feels compelled to complete her rituals.
Once she has completed these rituals, she makes a mad dash for
school and arrives when first period is almost over.
- Meredith's pregnancy was a time of joyous anticipation. If she
had moments of trepidation about taking care of a new baby,
these times passed quickly. She and her husband proudly brought
a beautiful, perfect baby boy home from the hospital. Meredith
bathed and fed the baby, comforted him when he was restless, and
became a competent young mother. Then the obsessional thoughts
began; she feared that she might harm her child. Over and over
again she imagined herself stabbing the baby. She busied
herself around the house, tried to think of other things, but
the distressing thought persisted. She became terrified to use
the kitchen knives or her sewing scissors. She knew she did not
want to harm her child. Why did she have these distressing,
- During his last year at college, John became aware that he was
spending more and more time preparing for classes, but he worked
hard and graduated in the top ten percent of his class with a
major in accounting. He accepted a position at a prestigious
accounting firm in his hometown and began work with high hopes
for the future. Within weeks, the firm was having second
thoughts about John. Given work that should have taken two or
three hours, he was going over and over the figures, checking
and rechecking, spending a week or more on a task. He knew it
was taking too long to get each job done, but he felt compelled
to continue checking. When his probation period was over, the
company let him go.
HOW COMMON IS OCD?
For many years, mental health professionals thought of OCD as a rare
disease because only a small minority of their patients had the
condition. The disorder often went unrecognized because many of those
afflicted with OCD, in efforts to keep their repetitive thoughts and
behaviors secret, failed to seek treatment. This led to
underestimates of the number of people with the illness. However, a
survey conducted in the early 1980s by the National Institute of
Mental Health (NIMH)--the Federal agency that supports research
nationwide on the brain, mental illnesses, and mental health--provided
new knowledge about the prevalence of OCD.
The NIMH survey showed
that OCD affects more than 2 percent of the population, meaning that
OCD is more common than such severe mental illnesses as schizophrenia,
bipolar disorder, or panic disorder. OCD strikes people of all ethnic
groups. Males and females are equally affected. The social and
economic costs of OCD were estimated to be $8.4 billion in 1990
(DuPont et al. 1994).
Although OCD symptoms typically begin during the teenage years or
early adulthood, recent research shows that some children develop the
illness at earlier ages, even during the preschool years. Studies
indicate that at least one-third of cases of OCD in adults began in
childhood. Suffering from OCD during early stages of a child's
development can cause severe problems for the child. It is important
that the child receive evaluation and treatment by a knowledgeable
clinician to prevent the child from missing important opportunities
because of this disorder.
KEY FEATURES OF OCD
These are unwanted ideas or impulses that repeatedly well up in the
mind of the person with OCD. Persistent fears that harm may come to
self or a loved one, an unreasonable belief that one has a terrible
illness, or an excessive need to do things correctly or perfectly, are
common. Again and again, the individual experiences a disturbing
thought, such as, "My hands may be contaminated--I must wash them"; "I
may have left the gas on"; or "I am going to injure my child." These
thoughts are intrusive, unpleasant, and produce a high degree of
anxiety. Often the obsessions are of a violent or a sexual nature, or
In response to their obsessions, most people with OCD resort to
repetitive behaviors called compulsions. The most common of these are
washing and checking. Other compulsive behaviors include counting
(often while performing another compulsive action such as hand
washing), repeating, hoarding, and endlessly rearranging objects in an
effort to keep them in precise alignment with each other. These
behaviors generally are intended to ward off harm to the person with
OCD or others. Some people with OCD have regimented rituals while
others have rituals that are complex and changing. Performing rituals
may give the person with OCD some relief from anxiety, but it is only
People with OCD usually have considerable insight into their own
problems. Most of the time, they know that their obsessive thoughts
are senseless or exaggerated, and that their compulsive behaviors are
not really necessary. However, this knowledge is not sufficient to
enable them to stop obsessing or the carrying out of rituals.
Most people with OCD struggle to banish their unwanted, obsessive
thoughts and to prevent themselves from engaging in compulsive
behaviors. Many are able to keep their obsessive-compulsive symptoms
under control during the hours when they are at work or attending
school. But over the months or years, resistance may weaken, and when
this happens, OCD may become so severe that time-consuming rituals
take over the sufferers' lives, making it impossible for them to
continue activities outside the home.
Shame and Secrecy
OCD sufferers often attempt to hide their disorder rather than seek
help. Often they are successful in concealing their
obsessive-compulsive symptoms from friends and coworkers. An
unfortunate consequence of this secrecy is that people with OCD
usually do not receive professional help until years after the onset
of their disease. By that time, they may have learned to work their
lives--and family members' lives--around the rituals.
OCD tends to last for years, even decades. The symptoms may become
less severe from time to time, and there may be long intervals when
the symptoms are mild, but for most individuals with OCD, the symptoms
WHAT CAUSES OCD?
The old belief that OCD was the result of life experiences has given
way before the growing evidence that biological factors are a primary
contributor to the disorder. The fact that OCD patients respond well
to specific medications that affect the neurotransmitter serotonin
suggests the disorder has a neurobiological basis. For that reason,
OCD is no longer attributed to attitudes a patient learned in
childhood--for example, an inordinate emphasis on cleanliness, or a
belief that certain thoughts are dangerous or unacceptable. Instead,
the search for causes now focuses on the interaction of
neurobiological factors and environmental influences.
OCD is sometimes accompanied by depression, eating disorders,
substance abuse disorder, a personality disorder, attention deficit
disorder, or another of the anxiety disorders. Co-existing disorders
can make OCD more difficult both to diagnose and to treat.
In an effort to identify specific biological factors that may be
important in the onset or persistence of OCD, NIMH-supported
investigators have used a device called the positron emission
tomography (PET) scanner to study the brains of patients with OCD.
Several groups of investigators have obtained findings from PET scans
suggesting that OCD patients have patterns of brain activity that
differ from those of people without mental illness or with some other
mental illness. Brain-imaging studies of OCD showing abnormal
neurochemical activity in regions known to play a role in certain
neurological disorders suggest that these areas may be crucial in the
origins of OCD. There is also evidence that medications and
cognitive/behavior therapy induce changes in the brain coincident with
(OMITTED: A graphic of Normal and OCD PET scans showing brain
activity in the brain of a person with OCD and the brain of a person
without OCD. (Source: Lewis Baxter, UCLA Center for Health Sciences,
Los Angeles, CA.) In OCD, there is increased activity in a region of
the brain called the frontal cortex.)
Symptoms of OCD are seen in association with some other neurological
disorders. There is an increased rate of OCD in people with
Tourette's syndrome, an illness characterized by involuntary movements
and vocalizations. Investigators are currently studying the
hypothesis that a genetic relationship exists between OCD and the tic
disorders. Another illness that may be linked to OCD is
trichotillomania (the repeated urge to pull out scalp hair, eyelashes,
or eyebrows). Genetic studies of OCD and other related conditions may
enable scientists to pinpoint the molecular basis of these disorders.
DO I HAVE OCD?
A person with OCD has obsessive and compulsive behaviors that are
extreme enough to interfere with everyday life. People with OCD
should not be confused with a much larger group of individuals who are
sometimes called "compulsive" because they hold themselves to a high
standard of performance and are perfectionistic and very organized in
their work and even in recreational activities. This type of
"compulsiveness" often serves a valuable purpose, contributing to a
person's self-esteem and success on the job. In that respect, it
differs from the life-wrecking obsessions and rituals of the person
TREATMENT OF OCD; PROGRESS THROUGH RESEARCH
Clinical and animal research sponsored by NIMH and other scientific
organizations has provided information leading to both pharmacologic
and behavioral treatments that can benefit the person with OCD. A
combination of the two therapies is often an effective method of
treatment for most patients. Some individuals respond best to one
therapy, some to another.
Clinical trials in recent years have shown that drugs that affect the
neurotransmitter serotonin can significantly decrease the symptoms of
OCD. Two serotonin reuptake inhibitors (SRIs), clomipramine
(Anafranil) and fluoxetine (Prozac), have been approved by the Food
and Drug Administration for the treatment of OCD. Other SRIs that
have been studied in controlled clinical trials include sertraline
(Zoloft) and fluvoxamine (Luvox). Paroxetine (Paxil) is also being
used. All these SRIs have proved effective in treatment of OCD. If a
patient does not respond well to one SRI, another SRI may give a
better response. For patients who are only partially responsive to
these medications, research is being conducted on the use of an SRI as
the primary medication and one of a variety of medications as an
additional drug (an augmenter). Medications are of great help in
controlling the symptoms of OCD, but often, if the medication is
discontinued, relapse will follow. Most patients can benefit from a
combination of medication and behavioral therapy.
Traditional psychotherapy, aimed at helping the patient develop
insight into his or her problem, is generally not helpful for OCD.
However, a specific behavior therapy approach called "exposure and
response prevention" is effective for many people with OCD.
In this approach, the patient is deliberately and voluntarily exposed to the
feared object or idea, either directly or by imagination, and then is
discouraged or prevented from carrying out the usual compulsive
response. For example, a compulsive hand washer may be urged to touch
an object believed to be contaminated, and then may be denied the
opportunity to wash for several hours. When the treatment works well,
the patient gradually experiences less anxiety from the obsessive
thoughts and becomes able to do without the compulsive actions for
extended periods of time.
Studies of behavior therapy for OCD have found it to produce
long-lasting benefits. To achieve the best results, a combination of
factors is necessary: The therapist should be well trained in the
specific method developed; the patient must be highly motivated; and
the patient's family must be cooperative. In addition to visits to
he therapist, the patient must be faithful in fulfilling "homework
assignments." For those patients who complete the course of
treatment, the improvements can be significant.
With a combination of pharmacotherapy and behavioral therapy, the
majority of OCD patients will be able to function well in both their
work and social lives. The ongoing search for causes, together with
research on treatment, promises to yield even more hope for people
with OCD and their families.
HOW TO GET HELP FOR OCD
If you think that you have OCD, you should seek the help of a mental
health professional. Family physicians, clinics, and health
maintenance organizations usually can provide treatment or make
referrals to mental health centers and specialists. Also, the
department of psychiatry at a major medical center or the department
of psychology at a university may have specialists who are
knowledgeable about the treatment of OCD and are able to provide
therapy or recommend another doctor in the area.
WHAT THE FAMILY CAN DO TO HELP
OCD affects not only the sufferer but the whole family. The family
often has a difficult time accepting the fact that the person with OCD
cannot stop the distressing behavior. Family members may show their
anger and resentment, resulting in an increase in the OCD behavior.
Or, to keep the peace, they may assist in the rituals or give constant
Education about OCD is important for the family. Families can learn
specific ways to encourage the person with OCD by supporting the
medication regime and the behavior therapy. Self-help books are often
a good source of information. Some families seek the help of a family
therapist who is trained in the field. Also, in the past few years,
many families have joined one of the educational support groups that
have been organized throughout the country.
IF YOU HAVE SPECIAL NEEDS
Individuals with OCD are protected under the Americans with
Disabilities Act (ADA). Among organizations that offer information
related to the ADA are the ADA Information Line at the U.S. Department
of Justice, (202) 514-0301, and the Job Accommodation Network (JAN),
part of the President's Committee on the Employment of People with
Disabilities in the U.S. Department of Labor. JAN is located at West
Virginia University, 809 Allen Hall, P.O. Box 6122, Morgantown, WV
26506, telephone (800) 526-7234 (voice or TDD), (800) 526-4698 (in
The Pharmaceutical Manufacturers Association publishes a directory of
indigent programs for those who cannot afford medications. Physicians
can request a copy of the guide by calling (800) PMA-INFO.
FOR FURTHER INFORMATION
For further information on OCD, its treatment, and how to get help,
you may wish to contact the following organizations:
Anxiety Disorders Association of America
6000 Executive Boulevard, Suite 513
Rockville, MD 20852
-- Makes referrals to professional members and to support groups.
Has a catalog of available brochures, books, and audiovisuals.
Association for Advancement of Behavior Therapy
305 Seventh Avenue
New York, NY 10001
-- Membership listing of mental health professionals focusing in
Obsessive Compulsive Information Center
Madison Institute of Medicine
7617 Mineral Point Road, Suite 300
Madison, WI 53717
-- Computer data base of over 16,000 references updated daily.
Computer searches done for nominal fee. No charge for quick
reference questions. Maintains physician referral and support
Obsessive Compulsive Foundation
P.O. Box 70
Milford, CT 06460
-- Offers free or at minimal cost brochures for individuals with
the disorder and their families. In addition, videotapes and
books are available. A bimonthly newsletter goes to members
who pay an annual membership fee of $30.00. Has over 250
support groups nationwide.
Tourette Syndrome Association, Inc.
42-40 Bell Boulevard
New York, NY 11361-2874
-- Publications, videotapes, and films available at minimal cost.
Newsletter goes to members who pay an annual fee of $35.00.
Books Suggested for Further Reading
Baer, L. Getting Control. Overcoming Your Obsessions and
Compulsions. Boston: Little, Brown & Co., 1991.
Foster, C.H. Polly's Magic Games: A Child's View of Obsessive-
Compulsive Disorder. Ellsworth, ME: Dilligaf Publishing,
Greist, J.H. Obsessive Compulsive Disorder: A Guide. Madison,
WI:Obsessive Compulsive Disorder Information Center. 2000.
(Thorough discussion of pharmacotherapy and behavior therapy)
Johnston, H.F. Obsessive Compulsive Disorder in Children and
Adolescents: A Guide. Madison, WI: Child Psychopharmacology
Information Center, 1993.
Livingston, B. Learning to Live with Obsessive Compulsive Disorder.
Milford, CT: OCD Foundation, 1989. (Written for the families of
those with OCD)
Rapoport, J.L. The Boy Who Couldn't Stop Washing: The Experience and
Treatment of Obsessive-Compulsive Disorder. New York: E.P. Dutton,
The Touching Tree. Jim Callner, writer/director, Awareness films.
Distributed by the O.C.D. Foundation, Inc., Milford, CT. (About a
child with OCD)
DuPont, R.L.; Rice, D.P.; Shiraki, S.; and Rowland C. Economic Costs
of Obsessive Compulsive Disorder. Unpublished, 1994.
Jenike, M.A. Obsessive-Compulsive Disorder: Efficacy of Specific
Treatments as Assessed by Controlled Trials. Psychopharmacology
Bulletin 29:4:487-499, 1993.
Jenike, M.A. Managing the Patient with Treatment-Resistant Obsessive
Compulsive Disorder: Current Strategies. Journal of Clinical
Psychiatry 55:3 (suppl):11-17, 1994.
Leonard, H.L.; Swedo, S.E.; Lenane, M.C.; Rettew, D.C.; Hamburger,
S.D.; Bartko, J.J.; and Rapoport, J.L. A 2- to 7-Year Follow-up Study
of 54 Obsessive-Compulsive Children and Adolescents. Archives of
General Psychiatry 50:429-439, 1993.
March, J.S.; Mulle, K.; and Herbel, B. Behavioral Psychotherapy for
Children and Adolescents with Obsessive-Compulsive Disorder: An Open
Trial of a New Protocol-Driven Treatment Package. Journal of the
American Academy of Child and Adolescent Psychiatry 33:3:333-341,
Pato, M.T.; Zohar-Kadouch, R.; Zohar, J.; and Murphy, D.L. Return of
Symptoms after Discontinuation of Clomipramine in Patients with
Obsessive Compulsive Disorder. American Journal of Psychiatry
Swedo, S.E, and Leonard, H.L. Childhood Movement Disorders and
Obsessive Compulsive Disorder. Journal of Clinical Psychiatry 55:3
MESSAGE FROM THE NATIONAL INSTITUTE OF MENTAL HEALTH
Research conducted and supported by the National Institute of Mental
Health (NIMH) brings hope to millions of people who suffer from mental
illness and to their families and friends. In many years of work with
animals as well as human subjects, researchers have advanced our
understanding of the brain and vastly expanded the capability of
mental health professionals to diagnose, treat, and prevent mental and
Now, in the 1990s, which the President and Congress have declared "The
Decade of the Brain," we stand at the threshold of a new era in brain
and behavioral sciences. Through research, we will learn even more
about mental disorders such as depression, manic-depressive illness,
schizophrenia, panic disorder, and obsessive-compulsive disorder. And
we will be able to use this knowledge to develop new therapies that
can help more people overcome mental illness.
The National Institute of Mental Health is part of the National
Institutes of Health (NIH), the Federal Government's primary agency
for biomedical and behavioral research. NIH is a component of the
U.S. Department of Health and Human Services.
Material appearing in this brochure is in the public domain except
where noted and may be reproduced or copied without permission from
the Institute. Citation of the source is appreciated. Portions that
are copyrighted may be reproduced only upon permission of the
This brochure is a revision by Margaret Strock, staff member in the
Information Resources and Inquiries Branch, Office of Scientific
Information (OSI), National Institute of Mental Health (NIMH) of a
publication originally written by Mary Lynn Hendrix, OSI. Expert
assistance was provided by Henrietta Leonard, MD, and Jack Maser, PhD,
NIMH staff members; Robert L. DuPont, MD, The Institute for Behavior
and Health; Wayne Goodman, MD, University of Florida College of
Medicine; and James Broatch, Obsessive Compulsive Foundation, Inc.
U.S. Department of Health and Human Services
Public Health Service
National Institutes of Health
National Institute of Mental Health
NIH Publication No. 94-3755
Printed 1994 [Updated 10-2000]
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