Schizophrenia: Understanding The Disease
Janssen Pharmaceutica
Contents
* You Dont Have To Go It Alone
+ Schizophreni
a is a medical illness. Period
+ What schizo
phrenia is not
* What Is Schizophrenia?
+ Where does s
chizophrenia begin?
+ The onset a
nd early symptoms
* What Are The Symptoms?
* Negative Symptoms the more inward
signs
* Positive Symptoms the outward or
more visible signs
* Can Schizophrenia Be Cured?
* Diagnosing Schizophrenia
* Treating Schizophrenia
* Side Effects
* Psychosocial Therapy And Social Su
pport
* The Cost Of Schizophrenia
* The New Treatments
* How To Talk To Your Healthcare Pro
fessional About Medication
* Glossary
You Dont Have To Go It Alone
We know that schizophrenia affects one in every 100 Canadian
s - that
means that 270,000 people will be diagnosed with this illnes
s at some
point in their life.
Any mental illness makes it difficult for people to cope wit
h their
emotions, to think clearly, and function in the community. I
t can
cause them to behave in unusual or inappropriate ways.
This booklet is for people with schizophrenia, their familie
caregivers and anyone who is interested in gaining a basic
understanding of the illness. Along with information about t
he
disease, a new class of treatments available are discussed.
They offer
new hope for people with schizophrenia and their families.
Although this booklet is not a substitute for important disc
ussions
between a person with schizophrenia, their family, and physi
cian, it
can be used as a basis for questions and discussion about
schizophrenia.
Schizophrenia is a medical illness. Period
Like epilepsy or diabetes, schizophrenia is a medical illnes
s - in
this case a disease of the brain. It is no ones fault. Pe
ople who
suffer from this disease must be seen as genuinely ill.
What schizophrenia is not
There are many misconceptions about mental illness in genera
l - and
schizophrenia is particularly misunderstood. Most of what pe
ople think
they know about the disease is wrong.
* Schizophrenia is not a multiple or split pe
rsonality.
* Schizophrenia is not caused by bad parenting.
There is no evidence to suggest that schizophrenia is ca
used by
how people have been treated as children or even adults.
* Most people with schizophrenia are not violen
t or dangerous.
Unfortunately, people with this disease have been portra
yed in the
media and on television as aggressive, dangerous and hom
icidal.
Studies indicate that with their psychotic symptoms unde
r control,
these individuals are no more likely to be violent than
anyone
else. Even when their symptoms are active, very few are
violent.
* Schizophrenia is not the result of childhood
trauma.
What Is Schizophrenia?
Evidence indicates strongly that schizophrenia is a severe d
isturbance
in the brains functioning. Its caused by many factors - in
cluding
changes in the chemistry of the brain, changes in the struct
ure of the
brain, and genetic factors.
There are billions of nerve cells in the brain. Each nerve c
ell has
branches that send and receive messages from other nerve cel
ls.
Neurotransmitters, chemicals released from these branches, c
arry the
message from the end of one nerve branch to the cell body of
another.
In the brain of a person with schizophrenia, something goes
wrong in
this communication system.
Over time, researchers have recognized that two neurotransmi
tters,
dopamine dough-pa-meen and serotonin se-row-toe-nin in p
articular,
have roles to play in schizophrenia. Evidence has accumulate
d that
suggests dopamine is very important. In the brain afflicted
with
schizophrenia, it appears as though there is too much of thi
s chemical
in certain areas of the brain. New evidence shows that abnor
malities
in serotonin activity also play an important role in the ill
ness.
Where does schizophrenia begin?
This disease generally strikes young people for the first ti
me in the
late teens or early twenties. Some people develop schizophre
nia later
in life, but this is not typical. It occurs in all races, cu
ltures,
social classes and both sexes. There are important male-fema
le
differences in the disease, with schizophrenia generally occ
urring
earlier in males, and later in females - but this is not a r
ule.
The onset and early symptoms
For some people, the illness advances so gradually that they
and their
family are not aware for a long time that they are ill. This
is
referred to as gradual-onset schizophrenia. A gradual build-
up of
symptoms may or may not lead to an acute or crisis episode -
a short
and intense period that involves delusions e.g. believing s
omeone is
trying to harm them, hallucinations e.g. hearing voices,
distorted
thinking e.g. blocked or jumbled thoughts, and an altered
sense of
self e.g. alterations in body sensations.
In some cases, however, schizophrenia may strike quickly, wi
th
individuals experiencing dramatic behaviour changes in a mat
ter of a
few weeks or even days. This is referred to as rapid or sudd
en-onset.
For these people, an acute episode usually follows. In each
case,
medical treatment should be sought. A person with schizophre
nia may
suffer from very few episodes in their life others have mor
e. And
some people are able to lead relatively normal lives betwe
en
episodes. Unfortunately, after each acute episode a patient
suffers,
the chronic symptoms of the disease may increase, making it
more and
more difficult for the person to function normally. Its imp
ortant,
therefore, to try to avoid relapses. This can be encouraged
by
following the prescribed treatment and therapy set up by the
physician
and family.
What Are The Symptoms?
Symptoms of schizophrenia are divided into positive and n
egative
categories. This can be confusing. Positive are those
characteristics that are present, and should be absent. Neg
ative are
those that are absent, and should be present.
If you or someone you know suffers from schizophrenia, some
or all the
following symptoms may be present. The expression of these s
ymptoms
varies greatly from one individual to another. No one sympto
m is
common to all people.
Negative Symptoms
Blunted Affect
Emotional withdrawal
Poor rapport
Passive/apathetic/social withdrawal
Difficulty in abstract thinking
Lack of spontaneity
Stereotyped thinking
Positive Symptoms
Delusions
Hallucinations
Thought disorders
Excitement
Grandiosity
Suspiciousness/persecution
Hostility
Negative Symptoms the more inward signs
Negative symptoms may appear early and can be the initial si
gns of
schizophrenia. Parents may notice that a child who was once
a
go-getter has become withdrawn from family and friends, ha
s lost
interest in their usual activities, and has become unfeeling
It can become very difficult for a parent to decide whether
something
is really wrong with their child because the adolescent exp
erience
that many teenagers go through can involve similar periods o
f
withdrawal and moodiness.
Negative symptoms include the following:
Blunted emotions or blunted affect
For the person with schizophrenia life can be devoid of
feeling.
Individuals may say they feel less connected emotionally to
what is
going on around them, and they may appear less responsive on
an
emotional level to their surroundings.
Alternatively, the individual may respond with inappropriate
emotions
because of the other things going on in his or her head - li
ke
suddenly breaking out in a fit of laughter for no apparent r
eason, or
when hearing sad or distressing news.
Emotional withdrawal
Individuals may be detached and uncommunicative. They h
ave few
interests and few personal relationships.
Poor rapport
In general, the person may avoid eye contact with you.
In
conversation, they may appear bored, indifferent, lacking in
warmth.
Passive/apathetic
For the individual with schizophrenia, there may be lac
k of interest
or concern for their surroundings. A lack of energy and driv
e makes it
difficult for them to complete simple tasks, and they are so
metimes
able to do little more than sleep or eat. They may appear to
seek or
want nothing. To those around them, they may appear lazy and
sluggish.
But this is the disease at work. It is as though some centra
l drive
mechanism that is normally present in most of us is missing.
Social withdrawal
The person with schizophrenia may spend most time alone
because he or
she feels safer and calmer or they are so absorbed in their
own
thoughts/senses they lose interest in the feelings and lives
of
others.
Difficulty in abstract thinking
Many people with schizophrenia can only think in concre
te terms. They
are unable to see beyond details to the underlying meaning,
unable to
move from the specific to the general.
Lack of spontaneity
There may be a hesitancy in the speech or action of ind
ividuals. Some
people with schizophrenia have decreased spontaneous movemen
ts or they
may become very unnatural in their movements.
Stereotyped thinking
Persons with schizophrenia can hold very rigid attitude
s and beliefs
that may seem unreasonable to those around them. Repetitive
thoughts
may intrude and interfere with their thinking.
Physical symptoms
Physical activity for the individual may slow down. In
severe cases,
activity may stop to the point where the person sits motionl
ess and
stares into space for long periods at a time. Individuals ma
y be
unconcerned with grooming and hygiene and appear untidy.
The negative symptoms can prevent patients from being able t
o hold a
job, or have a normal social life. When the symptoms are sev
ere, it
may be difficult for them to do even the simple things like
grocery
shopping, showering or just looking after themselves.
It was previously believed that this group of symptoms, the
negative
symptoms, were side effects of the antipsychotics used to tr
eat
schizophrenia. These side effects are often seen by caregi
vers and
even people with the illness as the price you pay for cont
rolling
the hallucinations, delusions, and paranoia. But we now know
that this
may not be the case. For some people, these symptoms may be
part of
the disease itself. So, a person with schizophrenia may not
be able to
help their lack of interest, motivation, and energy.
Positive Symptoms the outward or more visible signs
Delusions
Individuals suffering from delusions truly believe some
thing that does
not make sense to others around them. Typical delusions incl
ude the
belief one is being spied on, plotted against, harmed or tor
mented.
Patients may believe they possess special powers, or they ar
e being
controlled by other forces. Delusions of a religious nature
are common
in patients.
Hallucinations
People with schizophrenia may hear, see, smell, taste o
r feel
something that does not exist. By far the most common are au
ditory
hallucinations, where the individual hears voices talking ab
out them,
or to them. The voices often say critical or nasty things to
the
person, or command them to do things.
Thought Disorders
A person with schizophrenia may have difficulty organiz
ing and
processing their thoughts in a way that makes it possible fo
r them to
communicate clearly with other people. Their speech may appe
ar
fragmented and incoherent because their thinking is blocked
or
jumbled. This is sometimes called conceptual disorganization
Excitement
Individuals with schizophrenia may seem hyperactive and
restless. They
may feel widely varying and rapidly changing emotions.
Grandiosity
Individuals may believe they have great wealth, power o
r fame. Their
reality may be so impaired that they believe they can stop b
ullets
with their chest or fly over buildings.
Suspiciousness/persecution
People with schizophrenia are guarded and mistrustful o
f others. They
may believe that they are being watched or followed or suspe
ct people
are trying to harm them. Individuals may constantly search f
or proof
of their suspicions.
Hostility
Some people with schizophrenia may exhibit episodes of
hostility. They
may become abusive, sarcastic and uncooperative with their f
amilies
and caregivers.
While the positive symptoms are more striking and often call
attention
to the person with the disease, the negative symptoms are al
so
important, as they can seriously impair the persons capacit
y to
function and fit into the world around them.
Can Schizophrenia Be Cured?
There is no cure, but medication may help reduce many of the
symptoms
of the disease, so that rehabilitation, in many cases, is po
ssible.
Full recovery may occur in a small number of people, but it
cannot be
predicted. The delusions and hallucinations that grip young
adults in
the throws of their illness, usually most severe while in th
eir 20s
and 30s, tend to decline somewhat with age. So by the time
a person
is in their 40s and 50s, they may experience few of these
positive
symptoms. Of course, this is not true for everyone with schi
zophrenia.
Some individuals may still suffer from hallucinations late i
n life.
Diagnosing Schizophrenia
Unfortunately, we have no single blood test, x-ray or brain
scan from
which we can then say with certainty: Yes, that is schizoph
renia. To
reach a diagnosis of the disease, other possible causes must
be ruled
out. For example, the use of street drugs, like cocaine or L
SD, can
cause hallucinations and delusions. Other physical illnesses
can also
present symptoms like schizophrenia, such as epilepsy, brain
tumors
and thyroid disturbances.
Since there is nothing we can measure, no medical test we ca
n perform
to help define schizophrenia, we are left only with the symp
toms of
the disease.
Because of this, persons with schizophrenia often acquire di
fferent
labels from healthcare providers, before a clear diagnosis
is made.
This can be extremely frustrating for patients and their fam
ilies. But
this is a difficult disease to diagnose - symptoms may eithe
r go
unrecognized or not show themselves, until the illness is fa
irly
advanced.
For a doctor to diagnose schizophrenia, the symptoms must be
present
for at least six months.
That is why the most important information is a detailed pat
ient
history. The diagnosis is based on the symptoms - what the p
erson
says, what the family can provide about the persons behavio
ur, and
what the doctor observes.
Treating Schizophrenia
Drugs are the cornerstone of treatment for schizophrenia, ju
st as they
are the most important treatment for many physical diseases.
They are not a cure, but are used to help control the sympto
ms of the
disease. Along with medication, social therapy and rehabilit
ation are
very important tools in the treatment of this disease.
Depending on the severity of the symptoms and the stage of t
he
illness, the individual with schizophrenia may have to be tr
eated in
the hospital, especially if acutely ill. Other individuals a
re able to
manage their disease outside the hospital with regular visit
s to their
doctor, and other support staff.
The family is very important in treatment of individuals wit
h
schizophrenia. Family counseling is often recommended to und
erstand
and manage problems associated with the disease. Education i
extremely important. Persons with schizophrenia and caregive
rs should
learn all they can about the treatments and therapies offere
d, to be
able to take an active role in the management of the disease
Medication
Medications called antipsychotics or neuroleptics, de
veloped in the
1950s, have proven to be one of the most important medical
advances
of the century. As a result, people living with schizophreni
a no
longer have to be hospitalized for years. Many are able to l
ive in the
community.
There are well over 30 different antipsychotics available in
North
America. Although antipsychotics are the main drugs used in
the
treatment of schizophrenia, other drugs are often prescribed
to treat
other symptoms like anxiety, and sleeping difficulties that
frequently
afflict those with the disease. In addition, the side effect
associated with conventional antipsychotics often make it ne
cessary
for people to take other medications to lessen them.
Antipsychotics are not perfect. Although they may help contr
ol the
positive symptoms of schizophrenia, they have not been prove
n to be
effective against the debilitating negative symptoms of the
disease
e.g. social withdrawal, lack of drive. Some people with
schizophrenia do not respond to these drugs, and the side ef
fects may
contribute to people not taking their medication noncomplia
nce.
Without medication, one of the critical steps in the treatme
nt of
schizophrenia is missing - and relapses are more likely for
these
individuals. And remember, with each relapse is the chance t
hat
chronic symptoms become more severe, making treatment even m
ore
difficult.
Side Effects
For some individuals, the side effects of their medications
can cause
many problems. It is the group of side effects known as extr
apyramidal
symptoms EPS that are the most debilitating. Uncontrollabl
e
restlessness, muscle stiffness, tremors and involuntary move
ments
characterize these side effects. These people may further is
olate
themselves from family and friends because they are embarras
sed by
these side effects, and are unable to control them. They may
decide to
stop their medication. Family members may think that extrapy
ramidal
symptoms are part of the disease itself.
That is why it is important for individuals and families to
monitor
drug doses regularly, and to know and understand the side ef
fects of
particular antipsychotics.
Psychosocial Therapy And Social Support
Psychotherapy and rehabilitation go hand in hand with the us
e of
medication in the treatment of schizophrenia. Especially whe
n the
acute phase of the illness is over, many people need help to
rebuild
their lives so that they can make the best use of their capa
bilities -
enabling them to work, and build personal and social relatio
nships.
Supportive therapy is important for individuals living with
schizophrenia to provide them with encouragement, friendshi
p and good
practical advice on how to manage their day. Teaching of lif
e skills -
the management of medication, keeping appointments, learning
to
socialize again, getting a job - are all part of the rehabil
itation
process. Tragically, because the disease afflicts many peopl
e while in
the full bloom of youth, they havent even had the opportuni
ty to
learn these basic life skills yet. Its as if they did not g
et the
chance to fully mature. So rehabilitation can be very challe
nging.
For most individuals, one big key in the treatment of their
disease is
acceptance. This is also true of the family that surrounds t
he person
with schizophrenia. Acknowledgement that the disease is real
, that it
is not likely to go away, and that it may put limitations on
what the
person can do, will make it easier for everyone.
The Cost Of Schizophrenia
In addition to the emotional strain caused by schizophrenia,
families
and people with the disease must deal with additional financ
ial costs,
primarily due to the loss of employment. Although some peopl
e with
schizophrenia are able to work, many cannot.
The burden on the healthcare system is very real as well. In
fact
schizophrenia is the number one mental health care cost. In
Canada
alone, total costs are well over two billion dollars per yea
r. The
largest contributor to these costs is hospitalization.
Early treatment of the disease is critical. It has been sugg
ested that
delays in treating the early episodes of schizophrenia with
medication
may result in a poorer long-term outcome for individuals. At
any time,
over 50 of the repeat admissions to hospitals for mental il
lness are
individuals with schizophrenia. With early treatment, with t
he best
medications, relapses may be minimized. Costs to people with
schizophrenia, their families and the healthcare system can
therefore
be reduced.
The New Treatments
Thanks to an ever increasing understanding of the brains me
chanisms,
unique treatments have been developed for schizophrenia. The
se
therapies treat symptoms previously untreated by older medic
ations.
Conventional antipsychotics are effective against the delusi
ons and
hallucinations in some individuals with schizophrenia, but t
hey do not
control the debilitating negative symptoms such as social an
d
emotional withdrawal. In addition, people taking these drugs
often
suffer from side effects known as extrapyramidal symptoms e
.g.
uncontrollable shaking, tremors and muscle stiffness.
This new class of therapies treats both the positive e.g. d
elusions
and hallucinations and negative e.g. social withdrawal, la
ck of
desire or motivation symptoms of schizophrenia. And during
the course
of treatment they have been shown to produce a lower inciden
ce of side
effects than older medications - especially the serious extr
apyramidal
symptoms discussed earlier.
The positive and negative symptoms of schizophrenia are thou
ght to be
caused by abnormal levels in the brain of the neurotransmitt
ers,
including both dopamine and serotonin. Brain messengers like
serotonin
and dopamine carry messages from certain specific nerve cell
s to other
cells, or receptors, in the brain. Researchers have suggeste
d that
people with schizophrenia have too many dopamine receptors i
n certain
areas of the brain, or else they have receptors that are ove
rly
sensitive to dopamine. So in the brain of a person who has
schizophrenia, too many messages may be sent along these com
munication
pathways.
Conventional antipsychotic drugs work by blocking dopamine r
eceptors
on brain cells that use this chemical as a neurotransmitter.
It is
believed that abnormal levels of dopamine are responsible fo
r the
positive symptoms of schizophrenia.
New treatments, called Serotonin-Dopamine Antagonists, work
differently. Not only do they block the dopamine receptors,
they also
block serotonin receptors in specific areas of the brain. Th
ese two
receptors appear to interact with each other and drugs which
influence
both seem to be able to treat both the positive and negative
symptoms
of schizophrenia.
Because of this unique mode of action, side effects that are
seen with
conventional antipsychotics - e.g. uncontrollable shaking, t
remors and
muscle stiffness - are greatly reduced. So, many individuals
with
schizophrenia find these drugs easier to live with.
How To Talk To Your Healthcare Professional About Medica
tion
Learning as much as possible about the disease, the treatmen
ts
available, and the side effects of the drugs used in the tre
atment of
schizophrenia is important.
Asking questions of your doctor is justifiable, considering
the nature
of the disease and the course of treatment. Open-ended quest
ions like
what do you think about the new treatments? will enable th
e person
with schizophrenia and perhaps their family/caregivers to di
scuss new
treatments. Arriving at the best antipsychotic medication an
d the
right dose of that medication should always be a shared effo
rt between
the doctor and person with schizophrenia. So if there are co
ncerns
about current treatments, whether due to side effects, or la
ck of
symptom control positive and/or negative talk to your heal
thcare
professional.
Glossary
In addition to providing definitions for some of the medical
terms
used in this booklet, included are other words that you may
encounter
with schizophrenia.
Antagonist - Antagonists block receptor sites. Medications u
sed in the
treatment of schizophrenia are antagonists because they bloc
k specific
receptors in certain areas of the brain.
Antipsychotics - Specific medications used in the treatment
of mental
illness, like schizophrenia. They are used, as the name sugg
ests, to
control psychotic symptoms like delusions and hallucinations
Blocking - When the train of thought suddenly stops, especia
lly in the
middle of a conversation.
Cogentin - A medication used to help reduce the side effects
of
antipsychotics, e.g. shaking and tremors.
Extrapyramidal symptoms EPS - Side effects caused by antip
sychotics
neuroleptics. They include uncontrollable movements in the
face,
arms and legs.
Genetics - The science that studies the principles of heredi
ty,
specifically with respect to how traits and diseases are pas
sed from
parents to children.
Neuroleptics - Medications used in the treatment of schizoph
renia that
have
antipsychotic properties.
Neurotransmitter - A chemical in the brain that transmits or
sends
messages to other specific cells. Dopamine and serotonin are
neurotransmitters, and abnormalities in the level of
neurotransmitters, particularly dopamine and serotonin, are
thought to
be critical in schizophrenia.
Occupational Therapy - A type of therapy in which the indivi
dual
participates in a variety of creative tasks and activities r
elated to
daily living. This could include painting, woodworking, or p
ottery and
other activities like creative writing or poetry.
Out patient - An individual who comes into the hospital for
medical
care but does not need to be admitted.
Parkinsonism - A side effect of antipsychotics or neurolept
ics
characterized by awkward and stiff facial movements.
Psychiatrist - A physician that specializes in treating ment
al and
emotional disorders.
Psychosis - A major mental disorder in which a persons abil
ity to
think, respond, feel, remember, and communicate is affected.
Contact
with reality is usually impaired, interfering with the perso
ns
capacity to function normally.
Receptor - Special places on nerve cells that respond to spe
cific
chemical messages between cells.
Rehabilitation - Programs that help individuals return to no
rmal
functioning after a disabling disease, injury or addiction.
They are
designed to help patients live as independently as is possib
le.
Serotonin-Dopamine Antagonists SDAs - A new class of thera
pies used
in the treatment of schizophrenia. They treat the negative s
ymptoms
social withdrawal, loss of drive, lack of emotion previous
ly
untreated by antipsychotics, producing less EPS then convent
ional
antipsychotics. As well, they also control the positive symp
toms
delusions and hallucinations of schizophrenia.
Social Worker - A person specially trained to help individua
ls with
social adjustment. A social worker would counsel a person wi
th
schizophrenia and their family in dealing with the social an
d
emotional issues that are a result of the disease.
Reprinted with permission.
Internet Mental Health www.mentalhealth.com copyright 19
95-1996 by
Phillip W. Long, M.D.