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It is extremely
upsetting when, after a period of disturbed or difficult behaviour, a
relative or friend is diagnosed as having schizophrenia. Because of the many
misconceptions based on ignorance about this illness, it is natural that
everyone concerned is apprehensive about what will happen, particularly as
it often begins in young people with their future before them.
There are several important facts to bear in mind at this time. Firstly,
schizophrenia is an illness which, although disruptive, can be treated and
most sufferers respond to medication and can return to a normal or
near-normal life. About a quarter of those treated recover within weeks or
months and the illness never returns. About half recover but have further
bouts of illness. Sadly, the remainder do not respond well to treatment and
may remain ill for a long time.
Second, schizophrenia is not physically disabling like some illnesses that
attack young people such as multiple sclerosis or rheumatoid arthritis. Nor
is it, in itself, life-threatening, although one in seven sufferers commits
suicide.
Today, there are organisations like SANE, National Schizophrenia Fellowship
and MIND which exist to help individuals and their families. However, since
schizophrenia can last a long time, those involved should learn as much as
they can about it.
UNDERSTANDING THE ILLNESS
Schizophrenia
is the most common serious mental illness. It affects one person in a
hundred at some time in their life. It can start at any age but most
commonly begins in the late teens or early 20s. More or less equal numbers
of young men and women become ill, but women are usually 4 or 5 years older
than men when it starts. A quarter of a million people in Britain have
schizophrenia today, although many of these have the illness under control.
Schizophrenia has been described in all cultures and its incidence (about 1
in 100) is much the same in every country.
Many illnesses affect the way we think and experience things. Influenza and
other illnesses involving very high fevers may cause delirium defined as "a
disordered state of mind with incoherent speech, hallucinations and frenzied
excitement". But nobody would describe these fevers as mental illnesses.
Such physical illnesses also have physical symptoms and can often be
diagnosed from abnormal functioning of some part of the body as measured in
laboratory tests. Mental or psychiatric illnesses do not have specific
physical symptoms which can (as yet) be measured in the laboratory and the
abnormal state of mind and bizarre behaviour which are often the main
symptoms are usually prolonged, although they may appear or disappear of
their own accord. This makes it difficult for the doctor who can only judge
what illness his patients are suffering from by the unusual experiences and
behaviour they describe.
SCHIZOPHRENIA IN RELATION
TO OTHER MENTAL ILLNESSES
Schizophrenia
is one of the most severe of the common mental illnesses. It is one of the
psychotic disorders with symptoms such as hallucinations, delusions and
thought disorder that show the person has lost touch with reality. Psychoses
are of two types: organic and functional. Organic psychoses are due to
recognisable medical illness like the delirium that may accompany a fever or
the senile dementia that is a feature of Alzheimer's Disease. Functional
psychosis such as schizophrenia is not attributable to a known condition or
illness.
SYMPTOMS OF SCHIZOPHRENIA
Schizophrenia
has many different symptoms which has led some people to suggest that it may
be a whole family of illnesses. Symptoms fall into two groups. The first are
called positive or florid symptoms some of which are listed in
Table 2. One of the most common florid symptoms is hearing voices which may
demand that you take certain actions. Sometimes you can be seen arguing
fiercely with your voices in the street, often frightening people who do not
understand what is happening. Sometimes a young person sits with a record
player blasting into his ears in an attempt to drown the demands of his
voices. The symptoms may often include unusual experiences or beliefs which
affect behaviour. For example, you may feel the whole world is against you,
even members of your own family including those who are doing their best to
help. Modern medicines will usually control positive symptoms, however
alarming they may appear.
The second group of symptoms are called negative. They come on much
more slowly and don't respond to treatment so well. Someone with these
symptoms will withdraw, give up his friends, be unable to communicate
effectively with others, isolate himself for instance by rarely leaving his
room. Table 3 gives the most common negative symptoms of schizophrenia.
Negative symptoms cause a lot of distress both for those who are ill, who
struggle unsuccessfully to communicate, and for their families, who feel
unwanted and unloved. It is hard for them to understand what has happened
and why their child has become unable to hold down a job or look after a
home. These symptoms irritate and distress families more than positive ones
which, because they. are 'nonsensical', are more acceptable. Relatives often
blame negative symptoms on laziness and lack of effort instead of
recognising that they are due to an illness.
DIAGNOSIS
Because there
are no physical symptoms of schizophrenia which can be measured for example
by blood tests, the psychiatrist has to rely for his diagnosis on your
behaviour and the symptoms you describe. Diagnosis is difficult because the
course of the illness is lengthy and some of the classic indications of
schizophrenia may be delayed in appearing or may appear so slowly that only
a family member would notice the change. The psychiatrist faced with making
a diagnosis will base it on 'scoring' a whole range of symptoms: hearing
voices; thoughts not being one's own (thoughts removed or inserted, thought
broadcasting); outside forces acting on body actions; delusional perception.
Nowadays, most psychiatrists will base their diagnosis on assessing these
different symptoms but, because there is no laboratory test, there is no
certain way of proving the diagnosis.
HOW IT STARTS
Slowly
- Schizophrenia often starts
gradually in the middle and late teens. It is then hard to tell whether a
gradual change in behaviour is a sign of mental illness or normal teenage
rebellion. Because the changes are slow, parents often don't see that there
is something wrong. And, because the behaviour of normal teenagers often
changes, doctors too find it difficult to recognise the illness early on
unless they happen to have known the person over the years and can see the
change. If the teenage rebellion goes on for long and if the change in sleep
patterns and mood swings is severe, watch for other signs such as muddled
thinking, loss of friends and strange behaviour. Look out too for any sign
of delusions or hallucinations or depression. If you suspect that a member
of your family might have these symptoms and may be developing
schizophrenia, get advice at once as the sooner the treatment can start, the
less severe the illness is likely to be. When schizophrenia starts
gradually, it is more difficult to treat and more likely to show distressing
negative symptoms.
Suddenly
- Some cases of schizophrenic
illness start suddenly, sometimes after a shock or other stress such as
childbirth, infection or exams. A person starts to hear voices, has
delusions and a gamut of 'positive' symptoms. Your personality changes and
you can't think straight. To the family and friends, the illness seems
serious and distressing. Yet, there is often a complete and rapid recovery
with treatment and a return to normal life.
In later life
- Some people get
schizophrenia late in life in their 60s or 70s. It is then more common in
women, particularly those with poor hearing and living on their own.
Symptoms include hearing voices and odd beliefs. The illness usually
responds well to medical treatment. People with this schizophrenia can, with
treatment, usually keep active and live normally in the community.
WHAT CAUSES SCHIZOPHRENIA?
Nobody knows
its cause but there are a number of clues which are listed in Table 4.
Heredity is known to play a part. Schizophrenia sometimes runs in
families but it is not inherited in a simple way. If both a mother and
father have schizophrenia, there is 1 chance in 2 that their child will get
it. If only one parent has it, the chance that the child will develop it is
1 in 10. If one identical twin has it, the chance the other one will get it
is 50:50. But identical twins have identical genes (the carriers of
heredity) so if schizophrenia was due only to inheritance, we would expect
that if one twin developed it the other would always do so too. The great
advances made during the past 20 years in genetics and understanding how
heredity works make this an exciting area in the search for the cause or
causes of schizophrenia.
Abnormalities in the chemistry of the brain are also important. Individual
brain cells communicate with one another by chemical messengers called
neurotransmitters. Scientists have suggested that people with
schizophrenia may produce too much of one of these transmitters,
dopamine, and that this may explain the positive symptoms of the
condition. This suggestion is based on two kinds of evidence: first, drugs
that improve the positive symptoms of schizophrenia have in common the
ability to lower dopamine levels in the brain; second, drugs such as
amphetamine which stimulate dopamine transmission, produce symptoms similar
to schizophrenia when taken persistently in large doses. It now seems that
although dopamine transmission may be involved in some of the symptoms of
schizophrenia, an abnormality in dopamine is not sufficient explanation of
the disease. Nevertheless, research into the complex chemistry of the brain
is an important way of gaining knowledge of schizophrenia. Biochemical
explanations are not incompatible with genetic ones since the function and
balance of the neurotransmitters is determined at least in part by heredity.
For many years, it has been suspected that there might be structural changes
in the brains of patients with schizophrenia. However, the earlier methods
of investigation did not reveal strong evidence to support the idea. Recent
advances in methods of imaging the living brain have shown that there are
subtle changes in the brains of many patients with schizophrenia. For
example, slightly enlarged ventricles (the fluid-filled cavities in the
brain) and a lessening of the normal asymmetry of the brain which, in
humans, is slightly larger on one side. Such changes could be determined
genetically or they might be the result of damage to the brain before or
around the time of birth.
There are other environmental factors which might be implicated in causing
schizophrenia. For instance, stress is widely recognised as one of the
factors which appear to trigger off schizophrenic illness and may also cause
relapses in an established illness.
There is no convincing evidence that other psychological factors such as
distorted relationships within a family are able to bring about
schizophrenic illness. Surveys have shown that people with schizophrenia
have much the same family disagreements and differences as everyone else.
Families are sometimes blamed for the schizophrenic illness of the children.
There is no evidence to support such assertions, but it does appear that
families can play an important part in preventing relapse by avoiding too
much criticism, hostility towards or over-protection of the patient.
Although we still do not know what causes schizophrenia, we can conclude
that it can be provoked. in genetically predisposed people, possibly by the
effects of environmental disturbance, psychological stress or physical
illness.
CAN SCHIZOPHRENIA BE
PREVENTED?
We do not yet
know enough about the causes to say how the illness can be prevented.
However, one specific factor is important: drug abuse. Illicit drugs such as
amphetamines, LSD, cocaine and cannabis can cause hallucinations and
paranoid delusions similar to those found in schizophrenia. The psychotic
effects of these drugs do not always clear up readily and there is some
evidence that they may trigger a prolonged schizophrenic illness. In
addition, such drugs can cause a relapse of an established illness. If you
are concerned about drugs, discuss the problem with your doctor.
HOW SCHIZOPHRENIA IS
TREATED
There is, as
yet, no cure for schizophrenia but most sufferers improve with treatment
especially if combined with psychosocial help. Medication in the form of
antipsychotic drugs (also called the neuroleptics or major
tranquillisers) is necessary to alleviate some of the disturbing
symptoms. There is a large number of such drugs, many of them chemically
related to each other. They are generally more successful at controlling the
positive or florid symptoms than the negative symptoms although some drugs
such as clozapine and risperidone also seem to be successful in some cases
in reducing negative effects. Unfortunately, in addition to their
therapeutic action, these drugs all have unwanted side-effects, in
particular involuntary muscle movements and tics, facial grimaces and
restlessness (see Table 5). The unwanted effects are sometimes so
serious that doctors use other drugs to counteract them such as procyclidine
or orphenadrine.
Clozapine is successful in improving some sufferers who do not respond to
other antipsychotics or who have severe side-effects. In a small number of
people, it reduces the ability to make the normal number of white blood
cells which means the body cannot fight infections effectively. To make sure
this is not happening, clozapine is only available to patients who have a
blood test weekly for the first 18 weeks, then fortnightly and every four
weeks after a year. Clozapine has few of the side-effects of the other
antipsychotics, but the risk of damage to the blood-forming system means
that it is mainly used where other drugs do not work or are unacceptable.
Two newer antipsychotics, risperidone (Risperdal) and sertindole (Serdolect),
which are said to have some of the therapeutic features of clozapine, can be
used without blood monitoring.
During 1997-8, three further "atypical" antipsychotics, olanzapine (Zyprexa),
quetiapine (Seroquel) and ziprasidone, were introduced, although it is too
early to say whether any of them will prove to be a major advance on what is
currently available.
The establishment of a successful treatment for an individual suffering from
schizophrenia is a difficult balancing act. The doctor is searching for a
drug which will bring you the best quality of life. Different drugs may be
more or less acceptable to you, depending on your own metabolism. The doctor
will be looking for the minimum dose which will control the psychotic
symptoms, but will not cause undesirable side-effects. The medications used
for the treatment of psychotic illness are discussed in more detail in
There is no evidence that psychotherapy on its own has therapeutic value in
the treatment of schizophrenia and other psychoses, but counselling and
other forms of psychotherapy can help in dealing with problems associated
with the illness.
DEALING WITH THE ILLNESS
Part of the
problem is that the distressing symptoms of schizophrenia make it difficult
for sufferers to communicate with those they love. They may involve their
relatives in their persecutory symptoms, become difficult, antagonistic,
abusive or even threatening towards them. During this time, it is very
important that families and friends try to maintain as close a link as
possible and remain patient and understanding no matter how strong the
temptation is to become angry or resentful. In this respect, self-help
groups run by voluntary organisations can be an invaluable source of
support. There are several principles which families should try to follow.
EARLY DIAGNOSIS
When someone
you know is preoccupied with bizarre thoughts, becomes emotionally
withdrawn, has difficulty in thinking or shows a decline in performance and
depression, you should get professional help since these signs may herald a
schizophrenic breakdown (although they may be the symptoms of some other
types of disturbance). Families are usually in the best position to notice
these changes of behaviour and may be able to persuade the sufferer to seek
early help. In these early stages, the sufferer is often aware that he is
needing medical help and will be co-operative. But it is a difficult
decision for the family. The fact that a son or daughter withdraws to a
darkened room and refuses to eat, talk or emerge for days on end may be
somewhat exaggerated adolescent behaviour done to cause aggravation and
distress to the parents, or it may be the symptoms of the illness. However
difficult it may be to accept, the family should not allow such a situation
to drift but seek urgent help from the general practitioner. There is now an
accumulation of evidence that the earlier the symptoms of schizophrenia are
treated, the better the outcome.
Most general practitioners know relatively little about mental illness and
will refer their patient to a consultant psychiatrist for diagnosis. The
psychiatrist also faces difficult decisions. In the early stages of
schizophrenia, the diagnosis may be uncertain because the full-blooded
symptoms have not yet developed. Often the psychiatrist will want to give
his patient the benefit of the doubt, although this may rebound on the
sufferer and his family as the illness, if untreated, will often become much
worse. The sufferer may, as a result, lose insight, be unaware that he is
sick and unwilling to be treated.
SECOND OPINIONS
Schizophrenia
is such a serious illness that most general practitioners will (wisely)
refer suspected cases to a consultant psychiatrist and, however competent
and experienced in mental illness the GP may be, it is best to ask for a
referral. If you find yourself unsure of the psychiatrist's advice or
diagnosis, you should seek a second opinion, either by telling the
psychiatrist himself or (possibly more easily) the general practitioner who
made the referral. If this proves difficult, telephone
SANELINE (0845 767 8000)
where one of our helpline volunteers should be able to help.
GOING TO HOSPITAL
The
psychiatrist, after talking to you, may suggest that you go into hospital as
a voluntary patient for more extensive assessment and possibly treatment.
Usually, admission will be to the psychiatric department of an ordinary
hospital or to a specialist psychiatric hospital. In either case, as a
voluntary patient, you are entirely free to come and go as you please and
can discharge yourself at any time.
If you are not willing to go to hospital voluntarily (or say that you are
willing but past experience is that you will change your mind before
admission), and provided you need hospital treatment in the interests of
your own health or safety, or for the protection of other people, you may be
admitted to hospital against your will. In order to safeguard your liberty,
there are quite elaborate procedures for compulsory admission, which are
laid down in the Mental Health Act (1983). These admissions are said to be
'under section" of the Act.
Compulsory detention in hospital is limited by the Act (unless renewed) to
28 days under Section 2 and 6 months under Section 3, although someone
detained under section can (unless restricted by a court) have a section
ended at any time by the "responsible medical officer" in the hospital. Most
people who are ‘sectioned' are suffering from a psychotic illness,
particularly schizophrenia. Once the illness has taken grip, it is common
for the sufferer to be quite unaware that he is ill and, without
intervention, his condition may decline further.
The nearest relative of someone suspected of mental illness has the legal
right to request an assessment from an 'approved' social worker who is
specially trained in mental health matters. The social worker will discuss
frankly the family's fears and difficulties. Two doctors (one of them an
expert in mental illness and one known to the patient) will carry out an
examination. If they agree that there is a mental illness, the social worker
will consider the balance between the individual's liberty and the
consequence of not treating the illness. The fact that someone has been
sectioned does not mean that his illness is worse or less likely to be
controlled than that of other people. In fact, the reverse seems to be true,
and those with the most florid symptoms often respond best to treatment.
TREATMENT IN HOSPITAL
The
psychiatrist will usually try one or more treatments to see how well the you
respond. His aim will be to reduce the level of medication until he has
discovered the least dose required to control the symptoms which will also
minimise side-effects. If side-effects prove troublesome, the doctor
may try different medications since some suit individuals better than
others. If side-effects are troublesome (see Table 5), you could discuss
with the psychiatrist the possibility of trying one of the "atypical"
antipsychotics which have recently come on the market. When the psychiatrist
has completed his tests, he should keep you in hospital for some time to
make certain the symptoms are checked and the illness stabilised. Unhappily,
because of the shortage of beds in psychiatric hospitals (brought about by
the unwise closure of many beds by the government) there may be pressures on
you to leave hospital as soon as possible and sometimes patients are
discharged before they are ready. Before leaving hospital, every patient
should have a care plan set up and a key worker nominated.
BACK HOME AGAIN
When a patient is discharged from hospital, he will return home or to a
hostel or flat often provided by the local authority. Those who have a
family to return to are fortunate because there is someone to look
after them. Parents should not blame themselves for their son's or
daughter's illness. There was a theory years ago, now discredited, that "schizophrenogenic',
over-concerned mothers caused the illness and sadly, a few remnants of these
ideas are still current. Spouses may also feel very guilty when a husband or
wife becomes schizophrenic. Again, there is no evidence that the illness is
a consequence of dissatisfaction with the marital partner, although
naturally the illness itself may place a great strain on the relationship.
Equally, the sufferer should not be blamed for an illness which all the
evidence suggests is outside his or her control.
MAKING THINGS
NORMAL
Although many
individuals may be left with residual difficulties after an acute attack of
schizophrenia, life should be as normal as possible. Families should not
fall into the trap of thinking that because someone has schizophrenia they
are incapable of taking any decisions for themselves or of returning to lead
a normal life. Moreover, the sufferer should be encouraged not to regard any
slight deviation of behaviour as necessarily due to the illness without
looking at the situation as a whole. Advice should be sought about
employment, marriage, going abroad, childbirth and other areas of life so
that appropriate plans can be made. Many of these normal activities may be
made more difficult because of the stigma which surrounds mental illness. It
is also sensible to preserve the expectation that someone with a
schizophrenic illness should try to co-operate with others and to behave in
a socially acceptable way. A vicious circle of over-protection and
dependence on the part of the patient and carer can easily arise and should
be avoided.
WATCHING FOR RELAPSE
Patients with
schizophrenia are almost invariably required to continue to take a
maintenance amount of medication even when they appear to have recovered and
feel well. Most healthy people would find this requirement to take
medication regularly, perhaps for years, difficult to comply with. For the
schizophrenic person who may not be fully convinced that he is ill, it is
doubly difficult especially as there may be unpleasant medication-induced
side-effects. If friends or relatives discover that the patient is no longer
taking medication in the prescribed way, they should alert the psychiatrist
or key worker since failure to take antipsychotics may lead to a further
schizophrenic breakdown.
Because it is difficult to remember to take tablets every day, many people
are treated with a 'depot' injection of antipsychotic drugs, which is then
gradually released into the bloodstream over a period of weeks. It is
sometimes easier for a patient to attend for an injection every four weeks
than to take tablets every day. Nevertheless, some patients miss their
appointment for the next injection, and the family should help the medical
and nursing staff to ensure that this does not happen.
PREVENTING RELAPSE
A major role
of the family is to ensure that the sufferer does not become ill again.
Although most relapses occur when the patient fails to take medication,
there are other contributory causes: general health, drug abuse and
life-style. There is some evidence that relapse is more frequent in families
(or other carers) showing a high level of intrusive emotion and lessened
where they are more tolerant and accepting. Stress, for example at work, may
also trigger relapse.
Carers should be on the lookout for the tell-tale signs of returning
psychosis and should alert the psychiatrist or key worker as soon as
suspicions are aroused. Speed is essential because, if the returning illness
is caught sufficiently early, it may be controlled by changing the dose of
medication. But if it is left, it may quickly develop into a full-blown
psychosis in which the sufferer becomes unaware that he is ill and will not
co-operate.
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