OCD in aDults information about the disorder, its treatment and prevention
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OCD hos voksne, engelsk
Information about
OCD in adults
The disorder, its treatment and prevention
Psykiatri og Social
psykinfomidt.dkContents 03 What is OCD? 05 Why do some people get OCD? 06 What are the symptoms of OCD? 09 How is OCD diagnosed? 09 What treatment is available for OCD? 12 What can you do yourself if you are suffering from OCD? 13 What can relatives do? 15 Where can you find more information? Information about OCD in adults The disorder, its treatment and prevention OCD is a mental disorder with different degrees of severity. Despite being a nuisance, OCD can be a condition that people are able to live with while basically leading a normal life. OCD can also be an extremely disruptive condition where the symptoms rule out all possibility of a normal life. When someone is suffering from OCD, knowledge of the disorder is important. The more the person knows, the better he/she will be able to cope with and prevent the disorder and its consequences. This brochure describes the disorder as well as treatment options. It is mainly intended for individuals such as yourself being treated for OCD by the psychiatric service in Region Midtjylland, and their relatives. We hope this brochure will help you and your relatives to learn more about OCD. Kind regards The psychiatric service in Region Midtjylland Tingvej 15, 8800 Viborg Tel. 78 41 00 00
OCD in adults
What is OCD?
OCD is an abbreviation of obsessive- some of the time. But when they are in
compulsive disorder. The disorder is the middle of a situation that triggers
characterised by recurring compulsive OCD, their compulsive thoughts often
thoughts and/or compulsive actions. feel realistic and their compulsive
Most children and adults who suffer actions often feel necessary. A minority
from OCD have both compulsive of OCD sufferers are convinced that
thoughts and compulsive actions. their thoughts are right and believe
their compulsive actions are reason
Compulsive thoughts able. They are unable to distance them-
are unwanted thoughts, impulses selves rationally from their thoughts.
or mental images.
are often frightening and are about I tried to control my compulsive
dreadful things that might happen. thoughts, but the more I tried not
are unpleasant and experienced
to think of them, the more they
as intrusive. They often produce a
feeling of anxiety or disgust. filled my head. It was impossible
to channel my thoughts, and
Compulsive actions I became more and more
are repeated actions (e.g. hand-
convinced that I was going mad.
washing or checking-behaviour) or
mental rituals (e.g. praying, counting Kathrine, age 24
or repeating words) that a person
feels compelled to perform. OCD affects 2–3% of the population
are actions performed for the all over the world. The symptoms vary
purpose of reducing discomfort or from person to person, and most find
to avert some dreadful occurrence. this condition has a major impact on
their quality of life. Many OCD suffer-
In some people with OCD there are ers regard their compulsive thoughts
no compulsive thoughts behind the and compulsive actions as absurd
actions, but they experience extreme and embarrassing, so they are often
discomfort if they are unable to embarrassed about revealing them to
perform their compulsive actions. others. This is why some go around for
years with compulsive symptoms that
Most OCD sufferers know from they keep hidden from other people.
common sense that their compulsive As a result, many OCD sufferers do not
thoughts and compulsive actions are get the correct diagnosis and thus the
excessive or unreasonable – at least right help.
3OCD often begins in childhood or early
adulthood. approximately 80% develop abOut OCD
OCD before the age of 25. Development
50,000 to 100,000 people in
of the symptoms is often gradual, with
Denmark suffer from OCD.
mild compulsive symptoms gradually
increasing in their degree of severity. OCD affects just under 3% of
all women and approximately
Other times, the symptoms occur
2% of all men. On average,
suddenly, virtually overnight. symptoms in boys/men begin
earlier than in girls/women.
Many relatives and outsiders may find
OCD is found in all age groups.
it difficult to understand that the OCD
sufferer cannot just “pull himself or The prevalence of OCD is more
or less the same in all cultures
herself together” and stop performing
and countries.
the compulsive actions. But going against
the compulsive symptoms often induces OCD can be treated effectively
with psychotherapy and
so much anxiety and discomfort that
medication.
most people have given up the struggle
by the time they come to be examined OCD becomes a chronic
condition in some people.
and treated.OCD in adults
Why DO sOme PeOPle
geT OCD?
There is no straightforward explanation effective treatment shows a
for why some people get OCD. The normalisation of this disruption. Brain
cause is often a complex interaction of scans show that certain areas and
different factors, including genes, innate structures of the brain are frequently
susceptibility, and various types of stress affected. In rare cases, OCD may be due
and stressful events. to brain infections.
factors in the brain Genetic factors
Today, OCD is regarded as a neuro- Many OCD sufferers have a genetic
psychiatric disorder, in which a disruption predisposition to develop the disorder.
of the brain’s neurotransmitters, mainly There is a higher risk of developing
serotonin, plays an important part. OCD if someone in the family has it –
especially if the disorder begins early.
Some OCD sufferers have particular
personality traits in the form of a strong
sense of tidiness, accuracy or excessive
caution. However, a lot of OCD sufferers
do not have these personality traits.
Other factors
If you give OCD an inch, it
although all the evidence points to OCD
will take a mile. It was as if it
being predominantly a genetic, biological
was never satisfied, and the and neurological disorder, social and
compulsive actions became psychological factors are also involved.
external stress factors, both positive and
more and more extensive and
negative, can contribute to the develop-
prevented me, ultimately,
ment of the disorder, or to aggravating
from doing my work. existing symptoms. for example, inappro-
priate patterns of communication or a
eRIK, age 47
negative atmosphere in the family may
have the unfortunate effect of sustaining
or directly reinforcing the compulsive
symptoms. This is why it is often important
to also involve social and psychological
aspects in the treatment, and to involve
the family and other key people.
5What are the symptoms
of OCD?
People with OCD exhibit many different whether any harm has come to other
compulsive thoughts and actions. Some people, etc. For some OCD sufferers, this
OCD sufferers have one type of symptoms, makes it almost impossible to leave the
but most have several different types, and flat or house because they are unable to
the substance and nature of the compul- finish their checking rituals.
sive symptoms can change over time. For
this to be classed as OCD, the symptoms Compulsive thoughts of an aggressive
must involve suffering or affect everyday or sexual nature. Many OCD suffer-
functions. Compulsive thoughts may have ers are anxious about doing harm to
many different themes, and compulsive other people or to themselves, either
actions take many different forms. Here intentionally or negligently. Others are
are some of the most frequent forms: tormented by compulsive thoughts
about committing sexual assaults. OCD
Compulsive thoughts about dirt and sufferers who are tormented by these
infection and compulsive actions in the compulsive thoughts often try to avoid
form of hygiene and cleaning. There situations that trigger these thoughts.
is usually an excessive fear of getting The vast majority have mental rituals,
dirty, of becoming sick, or of accidentally e.g. in the form of trying to control their
spreading dirt or bacteria to other people. thoughts, trying to force these thoughts
This often results in compulsive actions in out of their head, or other things. Many are
the form of excessive hygiene or cleaning. afraid that they will act on their thoughts
and many keep them secret because they
Habitually checking things is a type of are ashamed of thinking these thoughts.
compulsive action that may occur in
virtually all types of compulsive thoughts. Compulsive thoughts of a religious or
An OCD sufferer exhibiting checking- moral nature. Here, the OCD sufferer is
behaviour habitually checks specific controlled by excessive, strict and rigid
things over and over again, e.g. door rules about what is right from a religious
locks, electrical appliances, whether or ethical point of view. Often, the OCD
he/she has forgotten something, sufferer tries to avoid even the tiniest
deviation from these rules.
The more I checked the stove, the more
I doubted my senses. In the end, I could Hoarding or collecting-mania is charac-
terised by the OCD sufferer’s excessive
stand in front of the stove staring for
collecting of things, or having difficulty
a long time and still be in doubt about throwing things out. For example, these
whether or not it was turned off. could be things of sentimental value, or
Martin, age 35 things they think they might need one day.
6OCD in adults
Compulsive thoughts about symmetry or suppress or change unwanted thoughts
accuracy are characterised by an excessive or counting-rituals.
compulsion to arrange things symmetrically
or in a particular order. Some people feel Seeking affirmation is often used by OCD
extremely uncomfortable if things are not sufferers to obtain reinforcement from
arranged correctly. Others have compulsive others that the things they fear will not
thoughts about something bad happening happen, or that what they have done is
to them personally or to their loved ones good enough. They often ask the same
if things are not arranged correctly. questions over and over again, and this kind
of compulsive action can be quite a burden
Annoying involuntary imaginings. Many on the relatives of the OCD sufferer.
OCD sufferers are tormented by intrusive
unpleasant mental images or “inner Compulsive thoughts can also be about
films” with unpleasant image sequences. other subjects, and the compulsive behav-
iour can assume other forms than those re-
Compulsive thoughts of a superstitious ferred to here. Almost any kind of thought
nature could be excessive avoidance or behaviour can develop into a compulsive
behaviour or rituals associated with symptom. Within the different types of
contact with superstitious phenomena, symptoms, the disorder manifests itself
e.g. black cats, graveyards, particular in widely divergent ways in the individual.
dates, numbers, etc.
Some OCD sufferers become socially
Somatic compulsive thoughts are isolated because it is difficult for them to
excessive thoughts about physical illness be around other people. They might have
that often result in the OCD sufferers to wash their hands many times a day and
excessively going to the doctor, checking they are always unsure whether they have
their body for signs of illness or exces- washed them thoroughly enough. Others
sively seeking information online about have difficulty leaving the house because
the illness in question. they are worried about doing things they
are afraid of, or because they are afraid of
Repetitive rituals involve repetitions revealing some of the compulsive symp-
of ordinary, everyday actions, such as toms they otherwise try to keep hidden.
switching lights on and off, opening and
shutting the door or going back and forth I was afraid that if I told anyone
across the doorstep. Some repeat their about my thoughts of intentionally
actions a specific number of times; others harming other people, they would
repeat the actions until it feels right. distance themselves from me.
And I was afraid, too, about
Mental compulsive actions are com-
whether I really was a violent person
pulsive actions carried out in the OCD
sufferer’s head, and which are not visible when my thoughts were centred so
to the people around them. This could be much on violence and rape.
saying prayers, reciting rhymes, trying to Rasmus, age 42
7I was very scared about starting medication, but a good chat with a doctor put to rest some of my preconceived ideas and fears. It helped a lot to know that the medication wouldn’t change my underlying personality, that the medication would not lead to physical dependency and that any side-effects would cease when I tapered off the medicine. Camilla, age 29
OCD in adults
How is
OCD diagnosed?
An OCD diagnosis is made based on and may resemble symptoms of other
in-depth discussions with a doctor or mental disorders.
psychologist and examination of the
person involved. Special questionnaires, I went around believing I was a danger
prepared with a view to diagnosing to those around me because of the
OCD, are often used. In some cases, the
content of my thoughts. So being
person’s GP can make the diagnosis. In
other cases, it may be a difficult case diagnosed with OCD was a big relief.
that needs referral to a specialist in I discovered, first, that the compulsive
adult psychiatry, or to an outpatient thoughts were not a sign I was going
psychiatric department with specialised
mad or was dangerous, and secondly,
knowledge of this field. The difficulties
can be because the OCD sufferer finds it that I was not the only one thinking
hard to talk about his/her symptoms, or thoughts like these.
because symptoms can vary so greatly Oliver, age 18
What treatment is available
for OCD?
There are two types of documented, The person is never forced to go on
effective treatment for OCD: Psycho medication or to undertake a course
therapy in the form of cognitive behavioural of therapy, and it is always possible
therapy, and medication. to taper off the treatment.
Doctors, psychologists and others Psychotherapy/counselling
with experience of treating OCD can Psychotherapy often takes the form of
decide what type of treatment is most cognitive behavioural therapy. Cognitive
appropriate. Before dismissing any behavioural therapy is the psychotherapy
option, it is important to get sufficient treatment for which there is the best docu-
information about medication and mentation, and which is recommended for
cognitive behavioural therapy in children, young people and adults with OCD.
order to be able to make an informed Some people will need supplementary med-
decision. In addition, it is important to icine, while many OCD sufferers get good
remember that there is always a choice. results from cognitive behavioural therapy.
9The treatment usually starts with The most important behavioural therapy
information about OCD. This part of the methods for OCD are exposure and
treatment is called psychoeducation response prevention. During exposure,
and leads to a common understanding the OCD sufferer is exposed, gradu-
of obsessive compulsive disorder and ally, cautiously and in small doses, to
the mechanisms that maintain it in an the things and situations that trigger
individual. It also introduces the thinking compulsive symptoms. This is done in
underlying the methods used in the combination with response prevention,
treatment. It is important for the OCD which means the person refrains from
sufferer to have some understanding carrying out the compulsive actions. So
of why the treatment is designed as it the OCD sufferer learns that the anxiety
is, because effort is required to get the or unpleasantness will fade away on
best out of the treatment. its own without the need to engage in
compulsive behaviour, and he/she gains
At the start of the treatment, a list of personal experience of how excessive and
problems and goals is prepared jointly unrealistic the disaster mindset really is.
with the therapist to establish a clear
agreement about what to work towards. Cognitive behavioural therapy is
arranged jointly with you
In the treatment, the therapist works Some OCD sufferers are afraid to seek
with a number of cognitive methods with cognitive behavioural therapy because
a view to challenging the OCD sufferer’s they know it means exposure and
disaster mindset. During the sessions, the response prevention. It is important
OCD sufferer works with the therapist to to know that the therapy is always
try out different ways of thinking, support arranged collaboratively between the
ed by small tasks to perform at home. OCD sufferer and the therapist; that
exposure is never forced; and that the
Other behavioural therapy methods are also therapist will never prevent the sufferer
employed for the purpose of challenging from engaging in compulsive behaviour.
the inappropriate compulsive behaviour
(compulsive actions, avoidance behaviour, Home assignments are a very important
etc.) that the OCD sufferer often becomes part of the treatment, as this is where the
trapped in. Many find that their compulsive person transfers what has been learnt
actions and avoidance behaviour are in therapy to his/her everyday life. This
necessary in order to control the unpleasant is why, from the very outset, the person
compulsive thoughts and disaster mindset, needs to be prepared to set aside plenty
to prevent dreadful things from happening of time for home assignments between
or to reduce the unpleasantness. In sessions. Home assignments may include
fact, though, the compulsive behaviour exposure and response prevention
contributes to reinforcing the compulsive assignments or use of other methods.
thoughts and the unpleasantness, and
thus maintains the symptoms. The OCD sufferer’s symptoms may have
a major impact on other people, and
10OCD in adults
often the family or other people close to Unfortunately, it can take a long time
the sufferer become actively involved in for the medication to work. It requires
the compulsive actions. Often, therefore, patience to wait for the effect of the
it is important to involve the whole treatment, but it is important to try one
family, spouse or other people close to drug thoroughly before possibly switching
the sufferer in the treatment. to a different one. It is also important to
take a sufficiently high dose.
I was afraid of cognitive behavioural therapy
because I had seen on TV that it involves Medication rarely results in the OCD
exposure and response prevention. But I symptoms disappearing altogether,
discovered it was 100% up to me how far I but many report that their compulsive
thoughts become less intrusive, and
wanted to go and at what pace.
the urge to engage in the compulsive
Kim, age 20
behaviour is reduced.
Treatment with medication
Cognitive behavioural therapy is usually Some, but by no means all, experience
recommended as the first choice in the side-effects from the medicine. Many
treatment of OCD. However, in more side-effects disappear after a few weeks
severe cases of OCD, or where cognitive of treatment, and the remaining side-
behavioural therapy has not been effects are usually mild.
effective enough, it may be necessary to
combine counselling with medication. However, some people do experience per-
sistent side-effects, and in these cases,
In the main, antidepressants are used switching to a different drug may be nec-
and are effective in the treatment of essary. Any side-effects disappear when
OCD. This medicine was originally devel- the person comes off the medication, and
oped to treat depression. The most com- none of the SSRI drugs, antidepressants
monly used types are selective serotonin or anti-psychotic drugs lead to physical
reuptake inhibitor (SSRI) drugs. The dependency.
name is derived from the chemical effect
of the substance. There are several
different types of SSRI drugs, and if one Most frequent
drug is not sufficiently effective, or has side-effects
unacceptable side-effects, there may be Headaches
good reason to try a different drug. In
Nausea
addition to SSRI drugs, an older type of
antidepressant, chlomipramine, is also Insomnia
used in the treatment of OCD. Some-
Tiredness
times, the addition of a small dose of
anti-psychotic medicine can be effective Reduced libido
when combined with an anti-depressant.
Weight gain
11If the medication is effective, it is advis- Some people experience a relapse when
able to continue with it for at least six to tapering off the medication, and at
twelve months after there has been an that point it can be an advantage to be
improvement, after which the medica- familiar with the cognitive behavioural
tion can be gradually tapered off under therapy methods and tools so that
the supervision of the doctor. It is impor- these can be used if there are signs of a
tant to taper off the medication under relapse. Some people may need life-long
the supervision of a doctor and over a medication.
period in which the person is doing well
and is not exposed to external stresses.
What can you do yourself
if you are suffering from OCD?
Realise that you are not alone. Approx- exposure and response prevention.
imately one person in 50 suffers from Before ruling anything out, make sure
OCD worldwide. You can meet other you have been given sufficient informa-
people who have OCD through the tion about both medication and therapy
Danish OCD Association, for example. so you can make an informed choice.
You are not going mad, and there is Be open and honest with your thera-
nothing shameful about having OCD. pist. It is important that you speak com-
Unfortunately, many people are embar- pletely frankly and openly about your
rassed about their symptoms and try to symptoms to your GP/psychologist in
conceal them from those around them; order to secure the best treatment.
that is a pity, because OCD is treatable.
Follow the treatment – even if, espe-
Learn to recognise your illness. Many cially at the start, the side-effects of
have a false impression of the causes the medication can be bothersome,
and maintenance mechanisms of the and even if cognitive behavioural
disorder. This can lead to attempts to therapy may be unpleasant for a while.
combat the compulsive symptoms in-
stead serving only to aggravate them. Try to be active and participate in
activities with other people. The more
Seek treatment. There are effective you confront your own anxieties
forms of treatment available today, and try to prevent yourself from
so do not live with untreated OCD. carrying out compulsive actions, the
Remember: you will never be forced to more control you will gain over your
start taking medication or to undergo symptoms.
12OCD in adults
What can
relatives do?
It can be useful for relatives to learn If the OCD sufferer has children who are
about OCD because this helps explode affected in one way or another by the
any myths and avoid a feeling of guilt, parent’s OCD, give the child as much help
self-reproach, and reproach from the as possible so that he/she is affected as
OCD sufferer. It is important to remember little as possible. Perhaps involve a pro-
that compulsive symptoms have nothing fessional such as a doctor or psychologist
to do with a lack of willpower. It can be a who might be able to support the child.
great relief to think of OCD as an uninvited
guest that no one, not even the OCD It is important to look after yourself
sufferer, has invited in. and take care of your own needs. It can
be a challenging experience being close
It is important for you, as a relative, to someone who suffers from OCD.
not to become involved in the OCD Compulsive symptoms often directly or
sufferer’s compulsive thoughts and indirectly affect friends and family, and
compulsive actions and not to adapt it can be unpleasant and frustrating
your own behaviour to the disorder. to witness someone you care about
Accommodating behaviour by relatives, suffering. Maintain as normal a routine
like the OCD sufferer’s own compulsive as possible, and continue to lead your
actions, helps to maintain and reinforce
the disorder. Instead, try to focus on
normal things in the time you spend with
Key facts
the OCD sufferer in order to reduce the
impact of the compulsive symptoms. OCD is a disorder with
compulsive thoughts and/or
compulsive actions.
As a relative, you can support the OCD
sufferer by encouraging him/her to Most OCD sufferers have
several different compulsive
seek treatment. Some OCD sufferers symptoms.
do not want to recognise that they have
a problem or refuse to get treatment. In OCD often begins in childhood
or adolescence.
that case, you have to accept that that is
their own choice, and that you yourself Cognitive behavioural therapy
must try to lead as normal a life as possi- is the first choice of treatment.
ble. You cannot force someone to go for The effectiveness of
treatment, but as a relative, you can stop medication (SSRI drugs) is well
your own accommodating behaviour so documented.
that you are not unwittingly a part of the
maintenance mechanisms of the disorder.
13own life, with normal activities and social Some people may benefit from talking
relationships. If you, as a relative, do to other relatives. This can be arranged
not look after yourself, there is a danger through the Danish OCD association and
that you will develop a stress reaction other patient associations that provide
or depression requiring treatment. If networking groups for OCD sufferers
this is the case, seek professional help. and relatives alike.
ultimately, my son’s OCD governed everyday life for the
whole family. everyone was forced to comply with the
OCD’s rules of excessive hygiene, which resulted in a lot
of arguments. But we didn’t feel like we had any choice,
as my son felt so awful if the rules were not followed.
JannI, age 48 – PaRenT Of a SOn WITH OCDOCD in adults
About the quotations
All quotations are fictitious.
About the fact box
“OCD – Sygdom og Behandling. For patienter og pårørende” (“OCD – the
disorder and its treatment. For patients and relatives”)
by Malene Klindt Bohni and Birgit Egedal Bennedsen.
Our thanks to the author
Malene Klindt Bohni, psychologist, OCD and anxiety disorders clinic,
Aarhus University Hospital, Risskov.
Our thanks to the author and technical editor
Per Hove Thomsen, professor, senior consultant, dr. med. sci., Child and
Youth Psychiatric Centre, Aarhus University Hospital, Risskov.
Where can you find
more information
psykinfomidt.dk
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psychiatric diagnoses in various languages
ocd-foreningen.dk
psykiatrifonden.dk
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