Comune di Orio Litta Progetto di Restauro "Ostel o Grangia dei Benedettini" Febbraio 2012 Comune di Orio Litta – Intervento di Restauro/ Risanamento Conservativo, Riqualificazione Funzionale e Adeguamento Impianti dell'Ostello dei Pellegrini della Via Francigena " Grangia dei Benedettini" DISCIPLINARE DESCRITTIVO E PRESTAZIONALE DEGLI ELEMENTI TECNICI
A21045 schizophrenia doc 2A21045 schizophrenia doc 2 28/5/04 12:46 pm Page 1 Support and Guidance for
Everyone Affected by Schizophrenia
A21045 schizophrenia doc 2 28/5/04 12:46 pm Page 2 Inside front cover Copyright Bristol-Myers Squibb Company and Otsuka Pharmaceutical Co., Ltd. 2004 All rights reserved, including the right of reproduction in whole or in part in any form.
All rights reserved. No part of this publication may be reproduced, stored in a retrieval system or transmitted in any form or by any means, electronic,mechanical, photocopying, recording or otherwise without the prior permission of the copyright owners. While every effort is made by the publishers andeditorial board to see that no inaccurate or misleading data, opinions or statements appear in this handbook, they wish to make it clear that the materialcontained in the publication represents a summary of the independent experience and opinions of the authors and contributors. As a consequence, the board,publishers and any sponsoring company accept no responsibility for the consequences of any such inaccurate or misleading data or statements. Neither dothey endorse the content of the publication or the use of any drug or device in a way that lies outside its current licensed application in any territory. Published by Bristol-Myers Squibb Company and Otsuka Pharmaceutical Co., Ltd., 2004.
141-149 Staines Rd, Hounslow, Middlesex, TW3 3JA, UK Telephone: +44 (0) 20 8572 7422Fax: +44 (0) 20 8754 3784 Editor – Elgie R, Amerongen APV, Byrne P, D'Arienzo S, Hickey C, Lambert M, McCrae J, Sappia S.
A21045 schizophrenia doc 2 28/5/04 12:46 pm Page 1 This handbook aims to offer support to anyone who has been touched by schizophrenia or
psychosis. Whether you have the il ness yourself or are caring for a family member or friend,
you wil find information here to help you.
Al the people involved in producing this handbook have first-hand experience of coping with schizophrenia, through caring for a family member, friend or patient.
Our aim is to offer straightforward and practical advice on how to live with schizophrenia. There is noscan or quick blood test to diagnose schizophrenia.
However, a better understanding of the il ness and how it is treated, may help you make informed decisions to ease your day-to-day living. Schizophrenia is a grossly misunderstood il ness. Myths and blatant untruths about the condition are regularly exchanged.
As a result, people with schizophrenia are often discriminated against. This can greatly increase their sense of isolation, loneliness and fear. Each chapter of this handbook explores a brief glimpse of how people live with schizophrenia. Every day, away from the sensationalist press articles and TV dramas, real people with schizophrenia and their families are quietly getting on with their lives, overcoming the many obstacles placed in their way. At a time when science is breaking new ground, new treatments for schizophrenia are emerging and our understanding of the il ness is ever increasing, there is every reason to be positive about the future. Nobody would pretend that living with schizophrenia is easy, but with support and understanding it should become a journey a little less difficult to travel.
A21045 schizophrenia doc 2 28/5/04 12:47 pm Page 2 President, GAMIAN-Europe (The Global Al iance of Mental Il ness Advocacy Networks), UK Dr Alain Patrice Van Amerongen Volunteer (Hospital Psychiatrist), Union Nationale des Amis et Famil es de MaladesPsychiques (UNAFAM), France Senior Lecturer in Psychiatry, University Col ege London, UK Member, Vereinigung Der Angehorigen Von Schizophrenie/Psychisch-Kranken (VASK),Switzerland Clinical Nurse Specialist/Community Mental Health Nurse, Carlow KilkennyMental Health Services, Kilkenny, Republic of IrelandNational Secretary, Association of Community Mental Health Nurses of Ireland, Republicof Ireland Dr Martin Lambert Psychiatrist, Research Fel ow of the University of Hamburg, Psychosis Early Detection andIntervention Centre (PEDIC) Centre for Psychosocial Medicine Department for Psychiatryand Psychotherapy, Hamburg University, Germany Vice President, European Federation of Associations of Families of People with MentalIl ness (EUFAMI), UK Coordinator, National Coalition of Associations of Patients Suffering from Chronic Diseases(CnAMC), Cittadinanza, Italy We would like to thank Bristol-Myers Squibb Company and Otsuka Pharmaceutical Co., Ltd.
for their support in making copies of this handbook available.
A21045 schizophrenia doc 2 28/5/04 12:47 pm Page 3 The fol owing people have also greatly supported the development of this handbook:Dr Mark Agius Associate Specialist, Bedfordshire and Luton Community NHS Trust, UK Member of the Board of Directors and Ex-President, European Federation of Associations of Families ofPeople with Mental Illness (EUFAMI), Spain President, VASK Zurich, Switzerland Dr Marina Economou Chairman, Panhel enic Association for Families of Mental Health, Greece Chief Executive, Mentality, UK Preston J Garrison Secretary General and Chief Executive Officer, World Federation of Mental Health, USA Prof Wolfgang Geabel President, German Schizophrenia Network, Germany Special Programmes Manager, Rethink, UK Senior Policy Advisor, Mental Health Europe, Belgium Chief Executive, Penumbra, Scotland, UK Prof Köksal Alptekin President, Schizophrenia Solidarity Association of Izmir, Turkey Prof Paolo Morsel i Secretary General, GAMIAN-Europe, France Dr Claudia Di Nicola President, Associazione Italiana Donne Medico, Italy President, European Federation of Associations of Families of People with Mental Il ness (EUFAMI), Netherlands Prof Vladimir Rotstien The Chief of the Department of Epidemiology and President of the Public Initiatives in Psychiatry, RussianAcademy of the Medical Health Sciences, Russian Academy of Medical Sciences, Russia Chief Executive, SANE, UK Maria Luisa Zardini President, Associazione per la Riforma del 'Assistenza Psichiatrica (ARAP), Italy Lastly, a very special thanks is due to:
Mark Hunter, Health Writer, for providing editorial support and Martin Davies, Psychiatric Nurse and Il ustrator for providing the il ustrations.
A21045 schizophrenia doc 2 28/5/04 12:47 pm Page 4 A21045 schizophrenia doc 2 28/5/04 12:47 pm Page 5 "I started developing symptoms of schizophrenia
When I went back home for the summer holidays my when I was at university studying psychology.
parents thought that I was being a normal hormonalteenager, being moody and not wanting to go out, notwanting to tidy my room up. But then I started behaving very I was living with people I didn't know, and I began to getvery, very paranoid and suspicious of people around me. I oddly. I started laughing to myself a lot and talking to voicesand my parents realised that I wasn't really very well. thought my housemates were plotting against me, and Istopped leaving my room because I'd be so worried about It wasn't me that sought treatment, it was my family who people reading my thoughts, or people implanting thoughtsin my head. said: ‘Emma you have a problem, we need to seek help for you'. Because I didn't acknowledge that I had a health The first time I really noticed that something was wrong was problem, they had to actually go to the doctor and insist that when I started sensing muffled screams just at the edge of the doctor get a psychiatrist to come and see me.
my hearing. Eventually I started hearing voices as well, and Although I am quite open-minded, when I was first in quite a lucid moment I looked up in my psychologytextbooks what hearing voices meant. It said psychosis, or diagnosed with schizophrenia I told my friends that I was in schizophrenia, which was very scary for me.
rehabilitation for a drugs addiction. I told myself I had a brain tumour – I didn't want to admit that I had a mental My flatmates would knock on my door and say: ‘Emma, are you okay?' But I just ignored them. They didn't really know that it wasn't normal for me to just sit in my room and ignorepeople. I went to see the university psychiatrist but I wasn't Emma Harding, Senior Project Worker and Coordinator,
able to explain all my symptoms because I got very paranoid User Employment Programme, Springfield Hospital, UK
about him. He just thought I was depressed because I'd justended a relationship so he put me on antidepressants, which made me overdose a few days later. A21045 schizophrenia doc 2 28/5/04 12:47 pm Page 6 NOTE: Page Nos. to be updated at next proof stage Chapter 1
Schizophrenia: An overview 9 The diagnosis is real 24 Treatment explained Where is my life going?
9 Dealing with the diagnosis
24 Is there a cure?
What is schizophrenia?
9 Making sense of the diagnosis
24 Antipsychotic medication
Symptoms of schizophrenia
10 Learning to:………………………… 24-27 Typical antipsychotics
Early warning signs
13 • cope
24 Atypical antipsychotics
Who to approach for help?
15 • reduce stress
24 Tailoring treatment
Waiting for a diagnosis
15 • beat low mood
26 Switching treatment
How long wil it take?
15 • relax
26 Types of medication
15 • regain control
27 Side effects – What to expect
• combat negative thoughts
27 Taking your medication
Alcohol and il icit drugs
Questions to ask about your medication 38
are not the answer
28 Treatment diary
How can families get help?
28 Non-drug treatments
Anna and Elsa's story
29 Cognitive behaviour therapy
Schizophrenia explained Fact and fiction
How wil schizophrenia affect my life?
Choosing a therapist
How wil the il ness progress?
Questions to ask your therapist
What are my chances of getting better? 20
The need to go to hospital
How can I understand my treatment?
Importance of self-management
A21045 schizophrenia doc 2 28/5/04 12:47 pm Page 7 Chapter 5
43 Getting back on the road 52 Useful information Reaching out for support
43 Slowly does it
45 Plan your day
52 Sources of information
Keep a calendar
The good days
and the bad days
47 Chapter 8
Always two steps forward,
sometimes one step back
47 Helping someone
Regaining your confidence
47 with schizophrenia
Importance of physical health
48 Don't become the patient
48 The fight for information
Coping with stigma and discrimination 49 Relapse – recognise the warning
51 signs and symptoms
Keep a carer's diary
Coping with a crisis
Helen and Alice's story
Emma Harding, Senior Project Worker
and Coordinator, User Employment
Programme, Springfield Hospital, UK
A21045 schizophrenia doc 2 28/5/04 12:47 pm Page 8 Where is my life going?
Whatever happened to all those things you were planning to do; the dreams, the hopes and the
expectations? Was there really a time when the future didn't seem so challenging, so difficult
and so bleak?
This is the harsh reality of schizophrenia. It is a condition that affects people in the prime of life. If you, or someone close to you, have schizophrenia,then your life may never be the same again.
But that does not mean your life wil never be ful and rewarding again. As many people who have been through this experience can tel Schizophrenia: An overview
you, it is possible to rebuild your future. The first step in taking back control of your life is to understand more about your situation. You may already have adiagnosis, or you may be in "limbo", somewhere between experiencing the first symptoms and receiving anexplanation of the cause. In either case you wil be better prepared to face the future if you and your family andfriends know more about the condition and its treatment. A21045 schizophrenia doc 2 28/5/04 12:47 pm Page 9 What is schizophrenia?
Schizophrenia is a mental il ness that affects about one in every 100 people worldwide.
Anyone can develop it. Schizophrenia occurs in the young, the old and the middle-aged. It is seen in peoplefrom al classes and a wide range of ethnic backgrounds. It affects just as many women as men.
There is evidence that schizophrenia runs in families and there may be environmental factors thatmake it more likely. But the truth is that we do not real y know the true cause of schizophrenia.
What we do know is that schizophrenia is a troubling condition that can significantlydisrupt the lives not only of those who have it, but also the lives of family and friends. A common misconception is that it is the result of a "split personality". This mistakecomes from the fact that the name "schizophrenia" was derived from two Greekwords meaning ‘split' and ‘mind'. It was intended, however, to represent thatprocesses of thought, feeling and intention no longer interact to form a coherentwhole, guiding the person's actions.
People with schizophrenia wil have good days and bad days, and times where they feel low or even hopeless. But appropriate medication can help stabilise the Have you ever thought: symptoms, and understanding open communication and supportive therapy can also help people with schizophrenia go on to live productive and fulfil ing lives.
"where is my life going?" A21045 schizophrenia doc 2 28/5/04 12:47 pm Page 10 Symptoms of schizophrenia
Having schizophrenia can feel like a rol er coaster. There are many different signs and symptoms of
schizophrenia and they occur in different combinations and severities according to the individual.
Although the symptoms can occur at almost any stage of life, they usual y first appear during late adolescence and early adulthood.
Men tend to develop symptoms in their late teens or early 20's and women in their 20's or early 30's. Recognising these
symptoms can be particularly difficult if the il ness develops during teenage years, as changes in behaviour are common at this age.
Symptoms of schizophrenia affect the way you think, feel and act. Doctors divide them into three categories: • "positive" symptoms – such as seeing, hearing, smel ing or tasting things that aren't there and delusions which can take many forms e.g. persecutory, telepattic, grandiose, religions, sci-fi or paranormal • "negative" symptoms – such as low motivation or emotion and withdrawing from family and friends, change in sleeping pattern, unsociable behaviour • "cognitive" symptoms – such as muddled thinking and being unable to finish a sentence People may have different combinations of positive, negative and cognitive symptoms. The fol owing list describes the symptoms your doctor may refer to and explains how they may make you feel. Having ‘schizophrenia' can feel like a rol er coaster A21045 schizophrenia doc 2 28/5/04 12:47 pm Page 11 Some symptoms may make you feel "crazy". They are as
Some symptoms may make you feel "lazy" and result in
real to the person with schizophrenia as they are unreal to
you losing interest in people and things around you
their family and friends
S doctor cal s it
How it may feel
S doctor cal s it How it may feel
• Hearing, seeing, feeling, tasting Low motivation
• You may lose interest in all aspects or smel ing something that is not • Your energy may drain away and you may • The most common hal ucination is hearing find it difficult to carry out even the most basic tasks, like getting out of bed or • Some people, especial y in the early days, cleaning the house may find these voices a comfort, somethingthat is not frightening Social withdrawal
• You may lose interest in your friends and • Others may have voices that may say prefer to spend most of your time on your nasty or negative things or give orders own, experiencing often intense feelings Delusions
Strongly believing something that can not
EG Lack of
• You may find it a big effort to read be true. For example:
a book or even watch a television • thinking that you are being watched programme from start to finish through the television • Remembering or learning new things, no • believing you are a famous person matter how smal , may seem impossible • believing the television or radio is sending you signals or messages • having strange or obsessive religious beliefs Paranoid
• feeling that other people are plotting
against you, trying to harm you or arefol owing you • believing that aliens are fol owing you • believing you have been ‘abducted' by Martians and taken to another planet A21045 schizophrenia doc 2 28/5/04 12:47 pm Page 12 Some symptoms may make you feel "hazy",
or as if you can't think straight
S doctor cal s it How it may feel
• Muddled thinking causing you to disturbance
become confused or to lose concentration PTO Poverty of speech
• You start to say something but half way and thought
through, forget whatever you were saying • Thinking things through may take too much effort and seem difficult to do A21045 schizophrenia doc 2 28/5/04 12:47 pm Page 13 Early warning signs
The early signs of schizophrenia are often very difficult to recognise. With hindsight, many people wil
look back and pin-point unusual behaviour long before a diagnosis of schizophrenia is given. But at the
time nobody realised that anything was wrong. Sometimes early signs of schizophrenia can be mistaken
for signs of growing up, drug abuse or of simply being lazy, arrogant or uncooperative.
If you are worried about yourbehaviour or that of a member ofyour family, the fol owing list ofwarning signs may help youdecide to seek help. Butremember, many adolescents oryoung adults experience some ofthese changes in behaviour ormood. Some of these can simplybe signs of growing up. You may begin to believe that you are being watched through the television 13
A21045 schizophrenia doc 2 28/5/04 12:47 pm Page 14 Early warning signs of schizophrenia
➜ Changes in mood such as:
moodiness, depression, inability to cry, excessive crying, laughing for no particular reason or incapability to laugh ➜ Sensory changes such as:
hearing voices, unusual sensitivity to noise or light ➜ Changes in activity such as:
becoming extremely active or inactive, sleeping excessively or hardly at al ➜ Changes in social behaviour such as:
avoiding social situations, dropping out of activities, refusing to go out, al owing relationships to deteriorate, saying irrationalor inappropriate things, using peculiar words or making meaningless statements ➜ Changes in relations with family such as:
constantly arguing, never phoning home, phoning home at strange times of the night ➜ Changes at school or work such as:
problems in concentrating, declining academic performance ➜ Changes in behaviour such as:
strange postures, prolonged staring, extreme religious beliefs, using il egal drugs ➜ Changes in appearance such as:
wearing bizarre clothes, poor personal hygiene A21045 schizophrenia doc 2 28/5/04 12:47 pm Page 15 When to seek help
Because many of the early signs of schizophrenia commonly occur ordinarily in young adults, it can be difficult toknow when to seek help. If you are worried about yourself or someone you care for, it is best to rely on yourinstincts. If you feel something is seriously wrong then it is better seek specialist help sooner, rather than later.
This chart offers a guide to the most appropriate response. No action
Contact school or support group
Consult family doctor
Trouble at school
Who to approach for help
If you are worried that you, a friend or a member of your family might be showing early signs of schizophrenia you need toseek specialist help. A diagnosis of schizophrenia can only be made by a psychiatrist. But because there are many otherconditions that can cause symptoms similar to schizophrenia, your first step should be consulting your doctor. He or she wildecide whether it is necessary to contact a specialist. A21045 schizophrenia doc 2 28/5/04 12:47 pm Page 16 Waiting for a diagnosis
One of the worst times for those with early symptoms of schizophrenia is what's often cal ed the "limbo" period betweendeveloping symptoms and receiving the diagnosis. Unfortunately, there is no scan or blood test that can be used todiagnose schizophrenia. A psychiatrist wil need to observe the person's behaviour over several weeks and conductinterviews with both the person with symptoms and, if possible, members of the immediate family.
‘Shopping' for a new doctor wil not make the diagnosis go away How long wil it take?
In some countries receiving an official diagnosis from a psychiatrist can take as little as sixweeks from the start of seeking help. In others however, it may take as long as 18 monthsor more. Many people spend this time "doctor shopping", searching for an explanation andsometimes refusing to believe the diagnosis of schizophrenia. Once the diagnosis has beenmade it is important to accept it and start to plan how you and everyone affected are goingto manage from now on. A21045 schizophrenia doc 2 28/5/04 12:47 pm Page 17 François is 16 and lives with his mother, father
François couldn't understand what he had done to deserve and younger sister in St Denis, a suburb in the
such treatment. It was scary and confusing and there was no north of Paris.
one he felt he could turn to for help. François spent more andmore time alone. He started skipping school and would ride around the city al day on the metro. When he was younger, François used to enjoy school. Hemade friends quite easily and always came in the top half of The metro could be scary too, though. He tried hard not to the class with his schoolwork. Over the past year or so, bother anyone. He kept his head down and avoided eye however, things have become increasingly difficult for contact. But stil he could sense the other passengers looking François both at school and at home. At first, like many of his at him, laughing at him and talking about him as he passed. teenage friends, he started to become moody and withdrawn. He spent most of the time in his bedroom, hardly François began to feel very alone. If even complete strangers talked to his sister any more and communicated with his were plotting against him, where on earth could he go for help? parents in a series of single words and grunts.
Then, one day while on the metro, François noticed a "That's teenagers for you," thought his mother as she waited poster advertising a helpline offering emotional support for for the phase to pass.
people feeling desperate or alone. François didn't know how a helpline could stop people talking about him. But François began finding it increasingly difficult to get up in the maybe it could help him deal with the fear. Nervously he morning. He was late for school several times and this caused dial ed the number.
trouble with his teachers. This was very unfair, he thought. It wasn't his fault he was late, so why were the teachers picking The woman on the other end of the line was kind. She listened to his story and she seemed to believe him. She alsohad some good advice. She said he should talk about the "They've never liked me. They're just looking for an excuse to situation with someone he could trust. And that he should go get me expel ed," he told one of his friends.
and see a doctor.
In fact, now he came to think of it, it wasn't just the teachers François thought about this. Perhaps talking to his mum might who wanted to get rid of him. François began to notice that help him feel better. And even though he didn't feel il , maybe several of his friends had started to avoid him. They would stop the doctor could stop him feeling so tired during the day.
talking when he arrived and he was convinced they werewhispering about him behind his back.
A21045 schizophrenia doc 2 28/5/04 12:47 pm Page 18 Fact and fiction
Most people have heard of schizophrenia, often when it is sensationalised in the media, but few
people know what the term real y means. This is understandable. Despite being so common,
schizophrenia is often wrongly portrayed in newspapers and on television. This can make
schizophrenia seem more frightening than it real y is. The reality is that schizophrenia is a treatable
condition that only rarely causes people to become aggressive or dangerous.
Ten things you should
know about schizophrenia
➜ Schizophrenia can be treated. One in
four people with schizophreniacompletely recover within five years.
For most others symptoms can bedecreased and wel -being improved at different levels.
➜ People with schizophrenia can ➜ People with schizophrenia do NOT ➜ Lots of people, whatever their il ness, achieve great things. Look at Nobel have a ‘split personality'. Although forget to take their prescribed Prize winner and economist John they may behave unusual y at times, medication. However, the Nash, jazz trumpeter Tom Harrel , they do not suddenly change into a consequences of forgetting Fleetwood Mac guitarist Peter Green. different person. schizophrenia medication can lead to arelapse, or recurrence of symptoms.
A21045 schizophrenia doc 2 28/5/04 12:47 pm Page 19 ➜ It is EXTREMELY RARE for people with ➜ People with schizophrenia are NOT ➜ What people with schizophrenia see schizophrenia to be violent or lazy. Lack of energy is a symptom of or hear seems absolutely real to dangerous. You are more likely to the il ness. It can be treated in day them – no matter how unbelievable be knocked over by a speeding hospitals, drop-in centres or even by or unrealistic others may find it.
police car, than to be harmed by going back to work.
someone with schizophrenia.
➜ Relapse can make it difficult for ➜ Caring for someone with people with schizophrenia to return ➜ Schizophrenia is NOT caused by bad schizophrenia can be rewarding.
to their previous level of wel -being.
parents. People with schizophrenia Difficult, certainly. Exhausting, at This means it is VITAL to continue have good parents, bad parents or times. Frustrating, almost always. But taking medication and attending completely indifferent parents. Just helping someone rebuild their life, therapy sessions, even when the like everyone else. whether as a family member, health symptoms seem to be under control.
professional or friend, can bringimmense personal satisfaction.
A21045 schizophrenia doc 2 28/5/04 12:47 pm Page 20 It's a question that most people affected by
schizophrenia ask at some stage. "What have I
done to deserve this?" The answer is "nothing at
al ." Nobody is to blame for schizophrenia. Not
you or anybody else.
Schizophrenia is an il ness of the most complicated organin the body – the brain. Although, we don't ful yunderstand why the brain malfunctions in this way, we doknow that certain parts of the brain of people withschizophrenia produce excessive quantities of aneurotransmitter cal ed dopamine, while other parts oftheir brain may have too little dopamine.
A21045 schizophrenia doc 2 28/5/04 12:47 pm Page 21 Dopamine plays an important role in the way we feel pleasure and experience different moods. Too muchdopamine may throw these feelings and senses off balance. It may cause people to experience feelings ofparanoia, have delusions or hear voices. These are cal ed "positive symptoms". Too little dopamine may causefeelings of confusion, apathy, loneliness and fatigue cal ed the "negative symptoms". The reasons why dopamine levelsbecome unbalanced are not ful yunderstood. In truth, the onset ofthe schizophrenia is probablydue to a combination of factors. These factors include:
➜ Family history – there is a slightly higher than average chance of developing schizophrenia if a close family member has the il ness. However, even if both parents have schizophrenia there is stil a 60 per cent chance their children wil not.
➜ Growing up in the inner city.
➜ Abusing drugs such as cannabis and amphetamines ➜ Being exposed to stressful events.
➜ Certain infectious diseases.
A21045 schizophrenia doc 2 28/5/04 12:47 pm Page 22 How wil schizophrenia affect my life?
This depends on how quickly you get help. Many people with schizophrenia live ful and productive lives.
With regular medication and the support of family, friends and healthcare professionals, many people
are able to manage their symptoms and regain an acceptable level of stability in their lives.
Untreated, however, schizophrenia can do more and more damage. If symptoms are severe, carrying out basic everyday tasksmay be problematic. You may find it difficult to look after yourself, forget to eat properly, or brush your teeth or wash regularly.
You may find yourself drinking more alcohol, smoking or taking drugs. As a result your physical health may also begin to suffer. Symptoms such as hearing voices or Lack of energy and motivation may All of these symptoms may make you seeing things that are not really there leave you feeling like there is no point feel very low and depressed. At times can be very confusing and make it hard in getting out of bed. All you want to do you may even feel that you are stuck in to concentrate on important things like is stay indoors and shut the rest of the a hopeless situation with no way out.
your job or studies. Learning new tasks world out. The less you go out, the This is not unusual and it is important to or remembering things can also more isolated you become and the ensure that you do all you can to lift become increasingly difficult.
more difficult it becomes to break out of your mood, and talk to someone youthis vicious circle.
trust about your feelings. Chapter 3 Schizophrenia is likely to affect your contains more advice on how to relationships with other people. You may combat negative feelings.
begin to feel that people close to you nolonger like you or are plotting againstyou. It can become difficult to trust even 22close members of your family. Strangers
may seem scary or threatening.
A21045 schizophrenia doc 2 28/5/04 12:47 pm Page 23 How wil the il ness progress?
The way in which schizophrenia progresses can vary considerably between individuals.
However, there are three distinct phases:
➜ Prodromal phase – before your il ness begins in earnest, you may notice a gradual change in your mood and behaviour. You may begin to withdraw from social contact, start acting strangely, feel tired and listlessand begin to neglect your appearance and personal hygiene. Your world may seem to be changing. Youmay feel neither happy nor particularly sad, just emotional y flat. Many people with schizophrenia learn torecognise these early symptoms as a warning that they may be about to relapse into the active phase oftheir disease. A review of your treatment at this early stage can prevent that damaging relapse happening.
➜ Acute or active phase – this is the point where your il ness becomes impossible to ignore.
Symptoms such as delusions, hal ucinations and muddled thinking become prominentand you may reach a crisis point. During a crisis, hospital may be the safest place to be.
Here your condition wil be assessed and you wil receive effective treatment. ➜ Residual phase – as the treatment takes effect most people find that their condition stabilises and the acute symptoms begin to disappear. Some symptoms (lack of energy,social withdrawal etc) may remain for a varying time period – for some they maydisappear quite quickly, for others they may not disappear. This phase can last manyyears, often interrupted by relapses into the acute phase. With regular medication andsupport, however, many people can keep these relapses to a minimum. A21045 schizophrenia doc 2 28/5/04 12:47 pm Page 24 What are my chances of getting better?
You are bound to be concerned about the future.
The overal outlook for people with schizophrenia is as fol ows:
➜ Approximately one in four people recover completely within five years and need no further treatment. For most others, symptoms can be decreased and wel -beingimproved at different levels.
➜ About one in every two people goes for long periods of symptom-free remission, interspersed with occasional relapses during which some symptoms return. The severity and frequency of these
relapses varies greatly and often depends on the quality of the care and support the person receives.
After a first psychotic episode up to three-quarters of people who stop taking their medication relapse
within one year. This figure drops to less than half in people who continue to take their medication.
➜ About 10 per cent of people wil continue to have persistent problems. Treatment may help reduce some symptoms and make life easier. However, the il ness is likely to remain for the rest of their lives. Which of these categories you fal into is impossible to predict. It may depend on many things including theseverity of your il ness, your personal circumstances and how wel you fol ow your doctor's instructionsabout medication. A21045 schizophrenia doc 2 28/5/04 12:47 pm Page 25 The need to go to hospital
The majority of people with schizophrenia receive most of their treatment close to home from a team of
doctors, nurses, social workers, occupational therapists, psychologists and other community-based
support services. There are, however, times when you may need to go to hospital. You wil probably
receive your initial diagnosis from a psychiatrist in hospital. You may also attend regular check-ups
to ensure that your treatment is working and not causing any unacceptable side effects. If you
become very il hospital may be the safest place to be. You may need to be admitted for
anything from several days, to some weeks and in some cases a few months, so that you
can receive 24-hour care. You wil probably stay in the psychiatric ward.
It is best if you can make the decision to enter hospital yourself. If, however, you become too il to make this decision, you may be asked to undergo "compulsory admission". This does not mean you lose al your rights to decide about your future. A key worker wil be assigned to you when you arrive at the hospital. He or she wil explain what rights you have under your country's mental health legislation. If you find it difficult to understand these rights, ask for written information. A21045 schizophrenia doc 2 28/5/04 12:47 pm Page 26 How can I understand my treatment?
Your doctor wil try to explain your symptoms in a simple, easy to understand way. However,
there are many technical terms you may hear that wil be unfamiliar to you. The glossary in
Chapter 9 wil help you understand these terms. Don't be afraid to ask questions or write things
down. If it is al too complicated to understand, ask the doctor to simplify it. Ask if there is any
written information that you can take away.
Importance of self-management
Many people with schizophrenia learn to recognise when they are about to become unwel or
experience a crisis. Close family members can also help identify warning signs such as loss of interest,
disturbing dreams, or problems with concentration, which tend to occur about a week before a relapse.
Being aware of changes in your mood and behaviour can help you manage your il ness and help you deal with an impendingcrisis. You may need extra support from your psychiatric healthcare team or your psychiatrist may need to review yourmedication. Planning what you need to do in advance of a relapse can make sure you get extra help quickly and efficiently.
Family members can also react to the warning signs by making sure that they are especial y careful to avoid criticism or hostilityduring your vulnerable period and that they are available to offer extra support if needed (see Chapter 8). A21045 schizophrenia doc 2 28/5/04 12:47 pm Page 27 There was a time when Patrick actual y enjoyed
After lectures he would go back to his room, and bury hearing the voices.
himself in his studies. If the voices came, he would sit backand listen to what they had to say. But recently the voices Of course, they were worrying to begin with. He couldn't had turned nasty. Before, they used to say such understand where they came from or why they were talking to complimentary things. How he was destined for glory. How him. Several times he had to go and check he hadn't left the God had chosen him to save mankind. How only he could
expose the terrorist cel that had infiltrated the student flats.
But as time passed the voices became more familiar and he What they were saying now was dark and frightening. The began to get used them. After al , he had been feeling pretty terrorists were on to him. They were in league with the lonely since moving to Dublin to continue his studies. And while secret police. And they were watching him through the CCTV the voices might be a bit confusing, at least they were company. in the street.
For some reason, Patrick had found it hard to make friends Then one night the voices woke him, shouting out a warning.
with his new fel ow students. He'd never had a problem The terrorists were coming. They would be here any minute.
socialising when he was growing up back home. But now, He had to escape. Patrick screamed out into the night for talking to people seemed to take more and more effort and help. He could hear his neighbours shouting, sirens in the after a while he simply couldn't be bothered. He even stopped street, then a banging on his front door. going to the cafeteria with the other students for lunch. He just didn't seem hungry any more.
A few hours later Patrick's parents arrived. The doctor, whohad come to Patrick's flat with the police, had cal ed themand told them what had happened. He explained thatPatrick had experienced an "acute psychotic episode" andwould need hospital treatment immediately.
A21045 schizophrenia doc 2 28/5/04 12:47 pm Page 28 Dealing with the diagnosis
If you or someone close to you has just been diagnosed with schizophrenia it is only natural to feel
a strong sense of disbelief and denial. You may be confused about what having schizophrenia
real y means. You and your family may also be reluctant to believe the diagnosis and may go in
search of a second or third opinion. Al of these reactions are normal and understandable.
The diagnosis is real
After you've got over the initial reaction, however, it is time tobegin to plan how you are going to manage your new situation.
For, although a diagnosis of schizophrenia can feel shocking,there is a positive side to it. Now you know what is wrong, youare in a much better position to try to make improvements. A21045 schizophrenia doc 2 28/5/04 12:47 pm Page 29 Making sense of the diagnosis
At such a worrying time it is bound to be difficult to take in al the information you wil be given about
your condition and its treatment. If you feel that things are happening too fast, there are a number of
things you can do to try and make sense of the situation.
➜ Don't be afraid to ask if there is something you don't understand ➜ Write down al the questions you want to ask, to help you remember ➜ Take a pad and pencil to write down important information ➜ Go with a friend or relative. They may remember details you don't ➜ Ask for information leaflets ➜ Ask if there are any support groups that may be able to help you ➜ Ask if there are any family support groups A21045 schizophrenia doc 2 28/5/04 12:47 pm Page 30 Learning to cope
If you receive a diagnosis of schizophrenia it wil be useful to learn some "coping strategies". The
fol owing strategies may help you avoid some of the triggers of schizophrenia symptoms and prepare
you for any crises that may occur.
Learning to reduce stress
One of the most common triggers for schizophrenia symptoms is stress. Unfortunately, because having
schizophrenia is extremely stressful in itself, stress is almost impossible to avoid. Nevertheless, it is
important to realise that stress is not unique to people with schizophrenia. Nearly everybody gets
stressed at some point. Some people just manage to deal with it better than others.
The fol owing strategies may help you either reduce the stress in your life or cope with it better.
➜ Learn what happens to you during stressful situations ➜ If you feel a situation is becoming stressful (a crowded using the table shown in this section. This wil help you street or shop for instance), withdraw gradual y. Trying to recognise the warning signs.
escape suddenly can make you feel even more stressed.
➜ Write a list of situations that make you feel stressed. What ➜ Avoid alcohol, il icit drugs and caffeine (in tea, coffee and 30 can you do to avoid them? If you can't avoid them, is there cola). These may relax you at the time but cause "rebound"
any way you can make them less stressful? anxiety later on.
A21045 schizophrenia doc 2 28/5/04 12:47 pm Page 31 Talking to someone you trust wil help ➜ Learn to relax – see the strategies below or ask your doctor, nurse oroccupational therapist about relaxation training. • listening to music • taking a bath • going for a walk • surfing the internet• going to the cinema or watching TV with a friend • playing sport ➜ Find someone to talk to. You are not alone. If you have a problem, share it with someone you trust.
➜ Simplify your life – don't take on too many tasks and try to do just one thing at a time.
➜ Make a schedule for each day and stick to it.
➜ If a conflict with someone is causing you stress, try talking to a person who is completely external to the situation to see if they can help sort it out with an objective view of the circumstances.
A21045 schizophrenia doc 2 28/5/04 12:47 pm Page 32 What happens at times of stress?
In our mind
To our body
We think about problems over and over again Hands tremble and feel sweaty We become worried about being worried Dry mouth and throat (circular thinking) We become confused Tightness in the chest We feel afraid, even when there is no danger Headache and tension in the neck muscles The world around us feels out of control We feel like something terrible is going to Tingling fingers or pins and needles happen at any moment Difficulty breathingDizziness, often caused by breathing too fast A21045 schizophrenia doc 2 28/5/04 12:47 pm Page 33 Learning to beat low mood
Around one third of people with schizophrenia also suffer from low mood or depression. Perhaps, this
is understandable given the difficulties they face. However, this does not mean you simply have to put
up with feeling this way. There are many things that may help improve your mood and combat the
feelings of depression:
➜ Get some rest – some symptoms of depression may be associated with fatigue. A good night's sleep can make you feel a lot better ➜ Get out of the house – isolation and boredom wil only make you feel worse. Leaving the house, even if only to go and buy a newspaper, can reduce these negative feelings ➜ Visit a friend or relative – human contact is a great way to raise your spirits ➜ Take some exercise – this wil relieve tension, reduce stress and improve your mood ➜ Do something you enjoy – when you are depressed it is easy to forget that there are things you stil find pleasurable. Read a book, watch a film, walk in the park or visit friends. Anything that takes your mind off your problems wil help ➜ Ask your doctor for help – antidepressive medications are usual y easy to take and effective against symptoms of depression ➜ Learn to relax – (see the strategies section) ask your doctor, nurse or occupational therapist about relaxation training ➜ Learn to deal with stress – see the previous strategies section ➜ Phone a helpline – if you feel you have no one to talk to, a helpline can be a great source of practical advice and support A21045 schizophrenia doc 2 28/5/04 12:47 pm Page 34 Learning to relax
➜ Regulate your breathing
Simply slowing down your breathing can help you cope with anxiety and reduce stressful feelings. Whenever you feel
particularly anxious or stressed, breathe in deeply through your nose, count to ten then let the air out gradual y, saying the word
"Relax" to yourself as the air releases. Now start to breathe in a six second cycle: In for three seconds, out for three seconds. At
the end of each minute, hold your breath again for ten seconds.
➜ Construct a relaxation zone
Choose a quiet, warm room in a place where you feel comfortable and safe. Place a mattress or comfortable rug on the floor.
Dim the lights. Light a scented candle and play some music or a relaxation tape (you can buy these). The music you choose
should be soft and gentle. Avoid songs with lyrics that might distract you. Now lie down and begin some relaxation exercises.
➜ Learn some relaxation exercises
For instance, when lying down concentrate on gradual y relaxing al your muscles. Begin at your fingers and toes and slowly
release the tension, moving along your arms and legs then body and finishing with your neck and head.
➜ Ask an expert
Occupational therapists wil be able to offer specialist advice on relaxation techniques. Or ask your doctor about relaxation training.
A21045 schizophrenia doc 2 28/5/04 12:47 pm Page 35 Learning to regain control
There a number of things you can do to start regaining control of your life.
For example: ➜ It's real y important to try and avoid recreational drugs – cannabis and other drugs can make the symptoms of schizophrenia worse, trigger apsychotic episode and bring on depression ➜ Drink sensibly – alcohol may make you feel relaxed at the time, but it can cause ‘rebound' tension in the hours and days that fol ow.
Drinking too much may make you feel depressed and make yourproblems much worse ➜ Ask your doctor for advice on making your lifestyle healthier. Cutting down on smoking, eating healthier food and taking more exercisewill all improve your physical health. This, in turn, can help yourmental well-being When in a crisis, ➜ Deal with depression – if you are feeling low, seek help. Talk to your doctor or other health professional. Seek advice from the experts.
to choose the correct path to regain control A21045 schizophrenia doc 2 28/5/04 12:47 pm Page 36 Learning to combat negative thoughts
Sometimes you may feel that everything is getting you down and that life is al too much to cope with.
Thinking about suicide is quite common among people with schizophrenia. It is important to remember
that you wil not always feel this way, and there are a number of things you can do to try and
suppress these thoughts.
➜ Try to talk to someone who you trust. Expressing your feelings can make them seem less overwhelming and may help to change your mood. If you have thought about suicide, don't be afraid of tel ing someone. Talking about suicide won't makeit more likely to happen ➜ Try to change your immediate surroundings. If you are in your room, go outside for a walk, visit a friend or relative or simply move to another room ➜ Make a list of al the positive things about yourself, your friends and the people you care about. Use this list to fight the suicidal thoughts ➜ Agree with members of your family that you wil cal them if you are ever feeling suicidal ➜ Cal the doctor or hospital if you feel overwhelmed by suicidal thoughts A21045 schizophrenia doc 2 28/5/04 12:47 pm Page 37 Alcohol and il icit drugs are not the answer
Many people with schizophrenia turn to alcohol and/or il icit drugs to try to relieve symptoms or to
help them cope with feelings of fear, isolation or depression. The use of cannabis,
amphetamines and other substances like cocaine is especial y common among young
people with schizophrenia.
Although some people claim that using il icit drugs gives them temporary relief or restores normality in their behaviour or blunting of symptoms, in the long term they may actual y be making their schizophrenia symptoms worse. There is plenty of evidence to show that these substances worsen the psychotic symptoms of the il ness – paranoia, hal ucinations and delusions. They can also ‘trigger' a psychotic episode of schizophrenia, even in those who have never had an episode before, but who may be at high risk of developing schizophrenia – for instance, people who have close family members with schizophrenia.
If you ‘treat' your schizophrenia symptoms with substances such as cannabis you also delay getting an appropriate prescription for antipsychotic medication. The longer the delay in getting medication and other therapies, the longer the schizophrenia episodes will last. This will reduce your chances of improving your life and your control over A21045 schizophrenia doc 2 28/5/04 12:47 pm Page 38 How can families get help?
➜ In the active phase of schizophrenia, the person affected may be too overwhelmed to sort out even minor problems. Taking on some of their responsibilities may help ease the stress in the short term. However, guardagainst taking over their life. This may create dependency and cause more problems later on.
➜ People with schizophrenia may use words that sound like nonsenseto others. If you cannotunderstand, try tocommunicate in other ways.
Doing things together likelistening to music, painting,watching TV or simply sittingquietly can al ow you to showyour interest and concernwithout necessarily using words. ➜ Never talk as if the person with schizophrenia is not there. People with schizophrenia are usual y aware of what is going on around them.
A21045 schizophrenia doc 2 28/5/04 12:47 pm Page 39 ➜ Look after yourself – you wil be no use to your family member if you al ow yourself to become emotional y exhausted and physical y il yourself. Protect against this by: - Keeping your own support network of friends and col eagues - Avoiding becoming isolated - Recognising signs of stress in yourself - Identifying the various situations that your family finds most stressful to cope with - Keeping up your interests outside the family - Seeking professional support - Taking a little time each day just for you ➜ Be prepared for a relapse or crisis – the best way to handle a crisis, or possibly avoid one, is to know what to do before it happens. ➜ Prepare for recovery – as your family member's condition, improves you may need to make some decisions about living arrangements. Some people return home, some go to group homes and others find rooms andapartments of their own. Each family must make its own decision. Your social worker wil be able to offer adviceon what kind of accommodation is available and what could be most helpful during different stages of recovery.
A21045 schizophrenia doc 2 28/5/04 12:47 pm Page 40 Anna has become increasingly worried about her
22-year-old daughter, Elsa, who lives with her in an
apartment in Hamburg.
Although Elsa has never been a particularly outgoing person,she has always taken great pride in her appearance. Not recently, however. Her hair doesn't seem to have been washed for weeks, she has stopped wearing make-up and her clothes look like she has been sleeping in them. At first, Anna assumed that Elsa must have had a row with one of her friends. After al she hasn't been out with them for awhile and seems to prefer staying in her room, sleeping al day and listening to music most of the night. But when Anna tried to talk about it, Elsa became very upset, screaming and shouting wildly: "Shut-up, shut-up. Why is everyone always tel ing me what to do? Why can't you al just leave me alone? I can't hear myself think with al your nagging." A21045 schizophrenia doc 2 28/5/04 12:47 pm Page 41 Now the music from Elsa's room is getting louder and louder.
aggressive outbursts. The doctor agrees to make a home visit When Anna asks her to turn it down, Elsa screams at her: later in the week.
"Get out. Of course the music's loud. It has to be to drown out al your chatter." After seeing Elsa the second time, the doctor decides to referher to a psychiatrist.
A little later Anna finds her daughter banging her fists hard against her head. Something clearly needs to be done, so "You must think it's something to worry about then?" asks Anna.
Anna makes an appointment with the family doctor. The doctor explains that Elsa's behaviour could be due to anumber of causes. It might be a physical or a mental When Elsa sees the doctor, however, she seems much better.
illness, he says. The doctor gives Anna some leaflets on She is rational and in control and answers the doctor's mental illness. "The psychiatrist will be able to make a questions clearly and calmly. The doctor prescribes some proper diagnosis." antidepressants and asks Elsa to come back in six weeks' time.
Over the next six months Anna and Elsa visit the hospital Six weeks later, Elsa has not taken a single tablet. Her strange several times to see the psychiatrist and other members of behaviour has continued and now she is refusing to go back to the psychiatric team. After a series of detailed interviews, with both mother and daughter covering al aspects of Elsa's life, the psychiatrist final y makes her diagnosis.
In the end Anna decides to visit the doctor alone. To help herexplain the problems she writes down a list of al the unusual "Elsa, we would like to inform you that you have things Elsa has done, her strange sleeping patterns, and her schizophrenia," she says.
A21045 schizophrenia doc 2 28/5/04 12:47 pm Page 42 Is there a cure?
Although, as many as three in four people with schizophrenia
improve significantly or recover ful y, there is no known cure for the
il ness. The only way to control symptoms is with antipsychotic
medication, combined with other non-medicine supportive therapies.
The evolutionof treatment Chapter 4
from asylums to talking therapies The treatment of schizophrenia has come a long way over the past 100 years (see table). Onceconsidered a mysterious condition to be treated with a range of bizarre and brutal therapies,schizophrenia is now regarded as a treatable mental il ness. Treatment is now centred aroundthe person rather than the il ness and usual y consists of a combination of medications cal edantipsychotics, and non-drug therapy. A21045 schizophrenia doc 2 28/5/04 12:47 pm Page 43 History of Schizophrenia Treatment
With no effective medicines available, doctors in the early 20th century used a (1911 – 1950s)
crude form of electroshock therapy to treat patients with schizophrenia. Thiscaused excessive fever and epileptic seizures, which appeared to decreasepsychotic symptoms. Insulin therapy was also used to sedate patients andreduce the number of functioning brain cel s.
Surgery was also sometimes used to remove the part of the brain thatprocesses emotions. Known as lobotomy, this procedure helped controlaggressive behaviour but left patients subdued and lacking emotion. The first antipsychotics –
The first antipsychotics became available in the 1950s. Throughout the 1960s The typicals (1950s –1960s)
more sophisticated antipsychotic drugs such as haloperidol and
fluphenazine, were introduced. Known as typical antipsychotics, these
medications became the treatment of choice for the next 30 years. Typical
antipsychotics continue to be used as a treatment option.
However, although effective against the positive symptoms ofschizophrenia, typical antipsychotics have a number of side effects and onlylimited effect against the negative symptoms of schizophrenia. In addition, they have no effect on cognitive symptoms.
A21045 schizophrenia doc 2 28/5/04 12:47 pm Page 44 History of Schizophrenia Treatment
In 1990 a new class of medications, known as atypical antipsychotics, was
introduced. These new agents are effective in control ing the symptoms of
schizophrenia and less likely to cause some of the side effects
experienced with previous medications. In addition, these agents were
effective against positive, negative and cognitive symptoms.
There are now a number of different atypicals available. Each has its ownadvantages and disadvantages, al owing treatment to be tailored to theneeds of individual patients. Most official guidelines now recommend that atypical antipsychotics shouldbe the first choice treatment for schizophrenia. Our understanding of schizophrenia is improving al the time. And as we
gain a greater insight into what causes schizophrenia symptoms, so new
treatments continue to emerge. A new type of antipsychotic
medications is likely to be effective in controlling the symptoms of
schizophrenia and less likely to cause some of the side effects
experienced with previous medications.
A21045 schizophrenia doc 2 28/5/04 12:47 pm Page 45 Antipsychotic medication is the most effective way to control the many symptoms (e.g. hal ucinations, delusions, and thinkingproblems) associated with schizophrenia. There are a wide variety of these medications available and you may need to tryseveral before finding the one that is best for you.
Antipsychotic medication can be divided into three categories – typical, atypical and a new type of antipsychotics.
Examples of generic names include:
haloperidol; trifluoperazine; chlorpromazine; thiothixene; perphenazine; fluphenazine
Typical antipsychotics have been around since the 1950s. They work by blocking dopamine receptors in the brain. Main benefits
– effective at control ing hal ucinations, delusions and paranoid thoughts.
– little effect on the negative symptoms of schizophrenia such as low motivation, emotional flatness and social withdrawal. High
incidence of uncomfortable side effects including uncontrol able movements such as tremors and shaking, dry mouth, andextreme tiredness. Because of these side effects, typical antipsychotics are no longer considered the first choice medication forschizophrenia. However, if you have been using these drugs without problems there is no need for you to change.
A21045 schizophrenia doc 2 28/5/04 12:47 pm Page 46 Examples of generic names include:
clozapine, olanzapine, quetiapine, risperidone, zotepine
These medications are cal ed atypical because they work in a differentway to the typical antipsychotics. They inhibit the action of dopamine inthe brain but do not block it completely. This means they are less likely tocause movement side effects.
– effective at control ing the positive, negative and cognitive symptoms
of schizophrenia. Low incidence of movement side effects seen with theearlier atypicals.
– different atypicals have different side effects. For example, weight
gain tends to be a problem with some atypicals, and sexualdysfunction with others. Dopamine stabilisation is the key to control ing schizophrenia symptoms A21045 schizophrenia doc 2 28/5/04 12:47 pm Page 47 Further advances have been made and there is now a new type of antipsychotics. These medicines work by mimickingdopamine and balancing the activity of dopamine in the brain. Example of generic name:
– highly effective at control ing the positive, negative and cognitive symptoms of schizophrenia.
Low incidence of movement side effects. No increased risk of weight gain or sexual dysfunction.
– Some people may experience
insomnia, others an increase in activity.
Balancing Dopamine helps to A21045 schizophrenia doc 2 28/5/04 12:47 pm Page 48 With a variety of so many medications for
schizophrenia to choose from, your
psychiatrist should be able to find one that
suits you. This choice wil depend on a
number of things – how wel the medicine
controls your symptoms, whether you suffer
any unacceptable side effects and on how
you feel about your own treatment. It is
most important that you let your psychiatrist
know what you most want from your
treatment. If there is a particular symptom
that troubles you or a side effect that you
are most keen to avoid, let your doctors
know. They may be able to tailor your
There is no ‘one size fits al ' when it comes to medication A21045 schizophrenia doc 2 28/5/04 12:47 pm Page 49 Any change to your treatment can be confusing. You may have to take your new medicine at different
times of the day, it may cause different side effects, or it may affect your symptoms in a different way. It
is therefore important that you ask for information on your new treatment before you take it. You should
also make sure your family know that you are changing to a different medication and that both you and
they know who to contact if you have any problems.
Types of medication
What the doctor cal s it Tablet that you swal ow, usual y with liquid Oral dispersable tablet (ODT) Tablet that dissolves in your mouth LIQUID
Oral solution (OS)
INJECTION INTO A MUSCLE – INTRA-MUSCULAR INJECTION (IM)
Short acting injection
The effect lasts for 12-24 hours. Used for acute treatment Long acting injection (depot) The effect lasts for 2-4 weeks.
A21045 schizophrenia doc 2 28/5/04 12:47 pm Page 50 Side effects What to expect
With the diverse choice of antipsychotic medication on offer, it is no longer
reasonable to expect people with schizophrenia to put up with deeply
unpleasant side effects. If you feel you are suffering unacceptable side
effects you should tel your doctor or psychiatric nurse immediately. Many
side effects can be reduced or eliminated simply by changing the dose or
even the drug you use. Others can be control ed by other drugs or by altering
your diet or lifestyle. You should also let your doctor know if you have suffered
any side effects to any medication in the past. This may affect the type of
antipsychotic drug he or she chooses to give you.
A21045 schizophrenia doc 2 28/5/04 12:47 pm Page 51 Taking your medication
Antipsychotic medication is designed not only to help make you better
but also to keep you wel . This means that you need to keep taking the
medication, even after you start to feel better. One of the most common
reasons for people relapsing after a
successful treatment is that
they stop taking their
Common reasons for not
taking antipsychotic medication
The person does not realise or accept he or she is il – this is where the encouragement offriends and family can be essential in ensuring that the medication is taken according tothe doctor's instructions The side effects are unacceptable – if this is the case, talk to your psychiatric nurseor psychiatrist. It may be possible to alter the dose of your medication or switchto a new one The medication schedule is too complicated – again talk to a mental healthprofessional. They may be able to simplify your schedule or suggest a medicationthat is simpler to take. In some cases the doctor may recommend the use of a "depot" injection. This is given once every two or three weeks and means it is notnecessary to remember to take the medication every day A21045 schizophrenia doc 2 28/5/04 12:47 pm Page 52 Questions to ask about your medication
When discussing your medication with your doctor or nurse
there may be questions you want to ask.
Here are some suggestions:
How wil this drug help me?
Which of my symptoms wil it help me with?
What are the risks of this drug?
What are the side effects?
Who should I talk to if I think I am having side effects?
What are the benefits?
How long wil it take to see some benefit?
Can I get hooked on it?
A21045 schizophrenia doc 2 28/5/04 12:47 pm Page 53 You may have to try several different antipsychotic medications before you find the one that is right for
you. You can help your doctor decide which drug suits you best by writing down what you like and what
you don't about each medication you try.
A21045 schizophrenia doc 2 28/5/04 12:47 pm Page 54 Other therapies are usual y used in combination with antipsychotic medication.
The aims are to reduce the symptoms of schizophrenia, to prevent relapse,
help you stay on your medication and help you rebuild your life.
Your doctor wil be able to tel you about the range and the types of therapies available in your area.
These treatments are sometimes referred to as
"psychosocial therapies" and include:
Cognitive behaviour therapyThis is a relatively short-term psychological therapy used to treat a wide range of mental health problems. In schizophrenia, it is thought to be most useful in helping to reduce delusional beliefs and to combat depression. The ultimate goal of cognitive behaviour therapy is to change any unhealthy patterns you may have developed in your thinkingor behaviour. This wil , in turn, help change the way you feel. Most cognitive behaviour therapists are psychologists, although doctors, nurses, counsel ors and social workers can also usethe technique. The therapy is usual y given in structured form. You and your therapist wil agree a number of goals and setcertain tasks for you to carry out in between sessions. A21045 schizophrenia doc 2 28/5/04 12:47 pm Page 55 A psychotherapist wil encourage you to explore your most difficult and painful emotions and experiences. This may include general feelings of anxiety and depression or specific traumatic events that have happened in your past. Although there are many different types of psychotherapy, the common goal of each is to help you become more self-sufficient and able to make rational, informed decisions about your life. Your therapist wil help you solve current problems and teach you skil s to help you cope with difficulties that may arise in the future. Although psychotherapy cannot cure schizophrenia it may help you cope with specific symptoms, such as:
• panic attacks • phobias• emotional problems • relationship problems • psychological sexual problems The treatment may also help you come to terms with the fact that you have schizophrenia and to comply better with your treatment.
Psychotherapy may be provided for individuals or children, couples, families and groups.
A21045 schizophrenia doc 2 28/5/04 12:47 pm Page 56 Research has shown that family interventions can delay or Trained counsel ors can help you talk about your thoughts and even prevent relapse in people with schizophrenia who have feelings, without fear of being judged or criticised. This may significant family contact.
help you talk your problems through and determine solutions. Family therapy should involve as many family members as There are two basic approaches to
possible and aims to reduce some of the stress and extreme counsel ing:
emotions of family life that can make schizophrenia • The existential approach which wil symptoms worse.
encourage you to explore themeaning and value of your life and The treatment consists of educating family members about learn how to be true to your own schizophrenia, offering behavioural and problem-solving ideals, priorities and values. advice, providing family support and crisis management • The person-centred approach which views you as the bestauthority on what is happening to The therapy can be offered to single families or conducted in you. This approach aims to help you larger groups. It may or may not include the person with create the conditions that wil al ow you to schizophrenia, depending on which phase of the il ness he or fulfil your own potential for growth. she is in at the time. A21045 schizophrenia doc 2 28/5/04 12:47 pm Page 57 Choosing a therapist
With so many different non-drug therapies to choose
from, it can be difficult to decide which is the best for
you. Many people find it is easier to make this
choice based on the therapist rather than the
therapy they are offering. For instance, you
might want to see a therapist from a similar
background or culture to your own. You
might prefer a female or male therapist.
Indeed, research has shown that how you geton with the individual therapist is moreimportant than the type of therapy you get. Ifyou and the therapist can work wel together, trust and respect each other, it is more likely that the treatment wil work. Your doctor should take your preferences and feelings about the therapist into account when recommending a non-drug treatment. You may also get good advice from voluntary organisations and support groups. A21045 schizophrenia doc 2 28/5/04 12:47 pm Page 58 Questions to ask your therapist
What kind of therapy do you offer and what is it trying to achieve?
How long do the sessions last?
How often are they held?
How many sessions am I likely to need?
How long before I should expect to feel some benefit from therapy?
Can I contact you between sessions if I need to?
What training have you had and how many years have you been practising?
Do you belong to a professional organisation?
Have you had experience of working with people with schizophrenia?
A21045 schizophrenia doc 2 28/5/04 12:47 pm Page 59 Marek was first diagnosed with schizophrenia
Marek's condition soon began to improve. His signs of seven years ago and has been on medication
relapse disappeared and so did the unpleasant side effects ever since. The treatment has proved highly
of his previous medication.
effective at controlling his symptoms and he has
No longer held back by his tremor and slurred speech, been able to continue working as a teacher at a
Marek began to feel less self-conscious in front of his classes school in Stavanger.
and he approached his teaching with a renewed vigour. Over the next few months however, Marek began to feel self- However, Marek has undergone several changes to his conscious about something else entirely. He appeared to be medication over the years. putting on weight. Initial y, he was prescribed a typical antipsychotic, which he Marek decided to take more exercise and to go on a low fat took at 3mg twice a day. This seemed to control his symptoms diet. But although Marek's weight gain slowed a little, there but caused some side effects. Marek's energy levels dropped was no denying the fact that he was stil getting heavier. alarmingly and he found it increasingly difficult to last the whole school day without fal ing asleep. He also found that his Final y, Marek decided to seek help from his family doctorhands would often shake uncontrol ably, which could make it who informed him that weight gain was, indeed, a known difficult to write on the blackboard. But the side effect that side effect of Marek's atypical antipsychotic.
distressed Marek the most was a spasm affecting his mouthand tongue. At one point Marek became so concerned that Marek returned to his psychiatrist for another review of his his students were mocking his slurred speech that he started medication. This time another atypical antipsychotic was to refuse his medication. He became irritable, easily distracted prescribed. Over the next few months Marek weight began to fal . Furthermore, Marek has also managed to stick to thelow fat diet and exercise programme. He says he feels the Fortunately, Marek's partner recognised these early signs of fittest he has ever been. a relapse and persuaded him to revisit his psychiatrist andhave his treatment programme reviewed. The psychiatristdecided to change Marek's medication to one of the newer A21045 schizophrenia doc 2 28/5/04 12:47 pm Page 60 Reaching out for support
Nobody could pretend that living with schizophrenia is easy. But you don't need to struggle
alone. There is a huge support network out there made up of dedicated professionals,
committed volunteers and people who simply love you and care for you very much.
Making ful use of these people's support wil help you along the road to recovery.
Help is at hand
There is a huge support network of people who care for you A21045 schizophrenia doc 2 28/5/04 12:47 pm Page 61 The family doctor
The psychiatric nurse
The social worker
When you first fal il , the family The psychiatrist is a specialist The psychiatric nurse is The social worker wil help doctor is probably the first in mental health. He or she probably the mental health you reintegrate yourself back medical professional you wil wil make your diagnosis and professional you wil see into life. This may be by see. Although unlikely to be an discuss what treatment you most. He or she wil be putting you in touch with expert in mental il ness, he or should have. If you have any responsible for making sure other support agencies, she wil be able to check for questions or concerns about you receive your medication, helping you sort out your any other causes of your your condition, its treatment encourage you to take it, for housing or benefit needs, or symptoms and wil know and any side effects you may assessing your response to ensuring that you receive the where to refer you for be having, you should ask to treatment and for monitoring services you are entitled to. specialist care. The family speak to the psychiatrist.
any side effects. doctor wil also be able to helpyou with any other healthproblems you may have.
A21045 schizophrenia doc 2 28/5/04 12:47 pm Page 62 The occupational therapist
Occupational therapists can A pharmacist can help you A psychologist is trained in Patient organisations, mental help you get back to work, with any questions you may the study of human behaviour health charities and support either in your old job or, if that is have about your medication.
and experience. When groups are an invaluable not possible, by finding new So, if you are worried about involved in the area of mental source of information and employment. The occupational side effects or whether your health, the psychologist support. Often run by people therapist wil help you identify treatment is properly usual y works as a clinical, who have direct personal the key skil s you already have control ing your symptoms, community or counsel ing experiences of situations and gain the skil s that you the pharmacist can give you psychologist, and unless also similar to your own, they can expert advice that is easy to medical y qualified, does not help guide you through the understand. If you need prescribe medication. difficult journey towards medication for any other condition, the pharmacist wilbe able to advise you onwhich drugs are compatiblewith your antipsychotics.
A21045 schizophrenia doc 2 28/5/04 12:47 pm Page 63 Sports clubs/Hobby groups
Citizen's advice agencies
If you don't want to talk about Just because you have You may be entitled to Learning how to use the your problems with someone schizophrenia doesn't mean benefits to help with your internet can open up a vast face-to-face, a telephone you shouldn't have other housing and welfare costs.
library of information on helpline is a good place to interests. Indeed, keeping Expert advisers can help you schizophrenia and related begin looking for advice, active and meeting other work out what you are entitled conditions. Email and information and support.
people who share your to and how to claim it. chatrooms can also put you in interests can help improve touch with people who may your mood and keep you have experiences similar to interested in life.
your own. Ask your key supportworker for advice on goodinternet resources.
A21045 schizophrenia doc 2 28/5/04 12:47 pm Page 64 Family and friends
When going through the Caring for someone with trauma of mental il ness it is schizophrenia can be an often easy to lose sight of the exhausting and stressful fact that there are people experience. You may feel that who stil love you and care for you are just as much in needyou. As a result many people of support as the person you with schizophrenia feel are caring for. There are isolated and alone. That is many networks of people in why there real y is no your position, which can substitute for the support al ow you to share offered by family and friends.
experiences and to offer and Family and friends can offer receive advice.
both emotional support andpractical help in dealing withthe il ness.
A21045 schizophrenia doc 2 28/5/04 12:47 pm Page 65 Radoslav knows he isn't the only 15-year-old in
It also means that Joseph has begun taking his medication Prague from a one-parent family. It's just that in his regularly. He already feels a lot better and is able to help out
family, it's sometimes difficult to know who the
around the house a little more. parent is, him or his father.
Every other week a psychiatric nurse visits Joseph at their home to see how he is doing and to see if Radoslav needs Radoslav's father, Joseph, has schizophrenia. In the past, this any more support. A social worker also visits occasional y.
has made it very difficult for Radoslav. Often he has had tocare for himself, buy his own groceries and cook his own Sometimes, Radoslav visits the centre with his father. Last time food. Sometimes, he has witnessed his father's psychotic he went they acted out a role play where Radoslav played the episodes, which have been upsetting and frightening. More part of the patient and Joseph played the doctor. Later they often, he has spent hours trying to persuade his father to get discussed how patients could talk to their family and friends about their il ness. It was fun playing games with his father again. But it also made Radoslav think. It had never real y It's a difficult life. Too difficult for Radoslav's mum and sister occurred to him before how hard things must be for his father. who left home last year when things got too much. Since then, Radoslav has had to cope on his own. Joseph has also enrol ed in a social and personal skil sprogramme set up by the centre's psychiatrist. In time this wil Recently, however, he has been getting a lot more help. His help Joseph regain some of the social skil s he has lost father has started attending a local hospital day centre where during his il ness. Radoslav hopes it wil give his father the he receives support from a team of doctors, psychiatric confidence to go out a little more. They used to go and watch nurses, social workers and occupational therapists. This footbal together. It would be nice to see another game.
means Radoslav can go to school without worrying what his father might be doing back home.
A21045 schizophrenia doc 2 28/5/04 12:47 pm Page 66 Always two steps forward, sometimes one step back
Recovering from schizophrenia is a difficult road to fol ow. Just when you think you are getting somewhere,
another setback appears on the horizon. This can be terribly dispiriting, but learning to accept the
disappointments is al part of the process.
The good days and the bad days
Often, it is difficult to deal with problems when they arise. You may become upset and find it hard to think clearly and calmly.
One way around this is to keep a diary of al the difficulties you face. You can then come back to them when you are feelingstronger and more able to think of a solution. Use the diary for your meetings with your health professional. You can go through it together and try to find solutions.
A21045 schizophrenia doc 2 28/5/04 12:47 pm Page 67 Regaining your confidence
When you start to recover there stil may be times when you feel low
and lack confidence. You may have feelings of shyness and be
reluctant to interact with people the way you used to. It wil not always
be easy, but building new social relationships is an important step on
the road to recovery.
The fol owing things may help:
• Make a list of the things you enjoy doing with other people, and try to slowly re-integrate these activities into your life.
• Make a list of the things you like about yourself and other people like about you, like a good sense of humour generosity, your artistic ability or computer skil s. • Slowly but surely socialise with people you care for and trust while you build your confidence.
and interacting with others may help boost your confidence A21045 schizophrenia doc 2 28/5/04 12:47 pm Page 68 Importance of physical health
When you have a mental il ness such as schizophrenia it is easy to let your physical health slip as wel .
Unhealthy habits can leave you feeling unfit and physical y unwel . This can, in turn, affect your mental
health and lead to a downward spiral of mental and physical deterioration.
Your doctor wil be able to advise you on how to make your lifestyle healthier. Some general tips are:
➜ Don't put off seeing your doctor if you feel unwel➜ Try to cut down or give up smoking➜ Drink alcohol in moderation➜ If you are overweight try to lose smal amounts of weight steadily, and consistently, over a long period of time. ➜ Take more exercise. If you hate exercising, think why that is. If it's because you find it lonely, join a class. If you feel self-conscious with others, do something alone, like walking, running or swimming at quiet times in the pool.
➜ Try to avoid eating cakes, crisps, chips and biscuits.
➜ Eat two portions of fish a week, with one portion of oil-rich fish (mackerel, sardines or herring)➜ Cut back on butter, margarine and other spreads, or choose low-fat alternatives.
➜ Eat plenty of fresh fruit and vegetables. Steam the vegetables instead of boiling.
➜ Use skimmed or semi-skimmed milk.
➜ Pasta, rice or potatoes should take up about a third of the room on your plate.
➜ Avoid adding salt to your meals.
➜ Drink plenty of fluids – aim for eight to ten glasses of water, fruit juice or semi-skimmed milk each day. A21045 schizophrenia doc 2 28/5/04 12:47 pm Page 69 Most people find relationships difficult even at the best of times. When you have a mental il ness,
interacting with almost anybody can sometimes feel impossible. There are no easy answers to
relationship problems. However, there are some practical steps you can take to make things easier.
➜ Try not to worry – schizophrenia can make you oversensitive to the things people say or do. Don't waste time worrying whether someone is "going off" you or wondering why they didn't phone you back. ➜ Talk to your partner – if you have a partner it is likely that he or she wil be worried about what effect your il ness may have on your relationship. Your treatment may be affecting your sex life for instance. Talk about these fears together and seek yourdoctor's advice if there is a problem you both feel needs to be addressed. ➜ Deal with conflicts – if you have an argument, don't brood over it. When you have calmed down, try to see the other person's point of view. If the two of you can't sort the problem out, consider bringing in a third person to mediate.
➜ Keep your family in the loop – even if you no longer live with your family, they wil stil care about how you are getting on. Let them know what you are doing, how your treatment is going and what you are planning for the future.
➜ Make casual contacts – passing the time of day with neighbours or shop assistants can be a good way of holding stress- free conversations ➜ Prepare for conversations – it's hard to get chatting with someone if you can't think of what to say next. Try to have some answers ready for common questions such as "What do you do?"
A21045 schizophrenia doc 2 28/5/04 12:47 pm Page 70 Coping with stigma and discrimination
One of the chal enges in recovering from schizophrenia is
dealing with the reactions of other people. There is a
huge amount of ignorance about mental il ness in general
and schizophrenia in particular. Myths about the disease
can lead people to believe that people with schizophrenia
are dangerous, wild and unpredictable. This can create a
vicious cycle of alienation and discrimination for those
who have schizophrenia and often for the members of
their families. Stigma can become the main cause for
social isolation, inability to find work, alcohol or drug
abuse, homelessness, and excessive institutionalisation,
al of which decrease the chance of recovery.
Sometimes you may feel there is a wal between you and others Because stigma occurs in other people's minds it can be difficult to combat. However there are some things you can do:
• Learn as much as you can about schizophrenia, so you can correct ignorant views with solid facts • Try to educate those around you about schizophrenia • If an ignorant view in a TV programme or newspaper article offends you, write and complain • Fight discrimination. Contact your union if you endure prejudice at work. Complain to management if you are discriminated against as a customer or service user A21045 schizophrenia doc 2 28/5/04 12:47 pm Page 71 Juanita realises that life wil never be the same again. Juanita's family cannot offer her much support. They have
never been close and she has hardly spoken to her parents Her il ness is under control now. She is taking her
since she moved from the country to Madrid ten years ago.
medication regularly and it is many months since
Her il ness has only increased the distance between them. she last experienced any symptoms of
There is, however, one ray of hope. Juanita's old friends may no longer want to know her, but at least she has started to meet new people with whom she can start afresh. A few But Juanita can't help feeling she has emerged into a world weeks ago she rang the number for the Spanish support that is more lonely and hostile than it was before. There are good reasons for this. Juanita's il ness was a They had some good advice on how to address the hostility distressing and frightening experience, not only for herself but Juanita was experiencing at work. They suggested she ask also for those around her. She knows she insulted and her occupational therapist to speak to her work col eagues abused many of her close friends. She doesn't blame them for about their fears and concerns. Maybe that would help not wanting to know her now. reassure them about working with her again. She can also feel the resentment of her col eagues at the The group also put Juanita in touch with a group of people supermarket where she works. Some have even refused to who had al been through experiences similar to hers. It was work with her. They say she is crazy and dangerous. Juanita strange meeting up with these people. They al came from has tried explaining that her il ness is under control and that very different backgrounds and Juanita was quite shy and even when she was sick; she never hurt anyone except nervous at first. But soon they began talking, laughing and herself. But they don't real y believe her. They have read the newspapers. They associate schizophrenia with crazedaxemen and random, violent attacks.
For the first time in months Juanita realised she wasenjoying herself. A21045 schizophrenia doc 2 28/5/04 12:47 pm Page 72 Slowly does it
Once you have begun to recover from schizophrenia you wil , no doubt, want to regain your
previous lifestyle as quickly as possible. But remember it is very important not to rush these things.
The road to recovery is a long one and it is best travel ed in short steps than giant leaps. Above al
make sure you progress at a pace you are comfortable with. There are bound to be those
around you who are
encouraging you and
wil ing you to
become your old
Accept this encouragement,
but don't let anyone push
Getting back on the road
you into doing something
before you feel ready.
Smal stepswil help you get back on the road to recovery A21045 schizophrenia doc 2 28/5/04 12:47 pm Page 73 Plan your day
When you are wel there are many things you wil do each day without even thinking about it. But when
you are recovering from schizophrenia it is easy to let whole days slip by without achieving anything.
Sometimes it can help to plan the whole day in advance. For example:
- Back home. Prepare lunch. Eat lunch.
- Appointment with community psychiatric nurse - Shower and brush teeth - Write letter to friend - Walk to shops. Buy food, newspaper, get video, birthday card for Mum - Prepare dinner. Eat dinner - Relax. Read newspaper - Cycle to day centre - Relax. Listen to music - Brush teeth. Go to bed A21045 schizophrenia doc 2 28/5/04 12:47 pm Page 74 Now plan your day:
A21045 schizophrenia doc 2 28/5/04 12:47 pm Page 75 Keep a calendar
It is easy to forget things like appointments, social events and
the birthdays of your family and friends. By keeping a
calendar you can make sure you are always aware of what is
coming up. If you try to accept every invitation you receive
(even if you don't particularly want to go at the time), you wil
always have something to look forward to.
A21045 schizophrenia doc 2 28/5/04 12:47 pm Page 76 As you make progress it can be useful for your doctors to know exactly how you are doing, what is
working and what problems stil remain. It can therefore be a good idea to chart your progress
in a day-to-day diary. For example:
How do I feel?
Any side effects
Got out of bed early Didn't hear any voices Didn't leave my room Not too bad, but feel Have put on 0.5 kg!! Cognitive therapy Should have taken my a bit down about weight No highlight today Expected a visit from Mike. Didn't show up a little bit anxious Watching footbal Went out for a walk A21045 schizophrenia doc 2 28/5/04 12:47 pm Page 77 When Carlo thinks back, he can't believe the pace
Now he is feeling much stronger. His medication seems to be at which he used to live his life.
working and Carlo feels ready to face the world once again.
He knows, however, that he must take things slowly this As a successful lawyer in a busy Rome practice he
time. A few weeks ago, he tried visiting the theatre with his would regularly work a 14-hour day and spend most
wife and a couple of friends. But while he enjoyed theproduction, he found socialising in the bar afterwards of the evening socialising with clients. Weekends
extremely difficult. He became anxious and felt increasingly would be spent visiting friends and hosting dinner
out of control.
parties with his wife. Carlo was ambitious and hard-
working. He was relaxed in the company of others
Since then he has taken things one step at a time. His wife and known for his sharp mind and easy sense of
suggested they visited some of the places they used to go when they were younger. They took his emergency contactnumbers with them just in case, but everything went wel But al that came to an abrupt halt when Carlo suffered his and they enjoyed themselves. Just the two of them, reliving first psychotic episode. happy memories.
It took six months of doctors' appointments, psychiatric More recently Carlo has felt able to meet up with members assessments, visits from the psychiatric nurse and regular of his family and friends. He now feels comfortable in groups medication before he felt able to start seeing other people of three or four people and as he relaxes he has felt some of again. If it hadn't been for the support of his wife, Carlo isn't his social skil s beginning to return. He has even made one sure he would have recovered at al . or two jokes.
Carlo knows the next step wil be to start meeting people onhis own, without the supporting presence of his wife. It's adaunting prospect, but Carlo feels he wil be ready soon. A21045 schizophrenia doc 2 28/5/04 12:47 pm Page 78 Don't become the patient
A diagnosis of schizophrenia can be traumatic,
not only for the person who has developed the il ness, but also for the whole family.
When a member of your family is
diagnosed with schizophrenia you
can suddenly find yourself thrown
into a strange and unfamiliar
world. You may find yourself
acting as a "buffer zone"
between the good times and the
bad. When things are going wel ,
Helping someone with schizophrenia
the person affected may be able to
cope on his or her own. When a crisis
arises they may be admitted to hospital.
For the times in between, you may have to offer
A21045 schizophrenia doc 2 28/5/04 12:47 pm Page 79 You may be torn between feelings of concern for your loved one, confusion over what the future may bring and anger at thesudden demands being put on you. If you are not careful, these conflicting emotions can tear your family apart. Schizophrenia creates a ripple effect touching many people A21045 schizophrenia doc 2 28/5/04 12:47 pm Page 80 There are a number of things you can do, both to help your loved one through their il ness and to help
you and other family members cope. For example:
• Learn as much as you can about schizophrenia • Find out what support services and contact groups are available in your area • Join a carers/family network to share experiences and offer mutual support • Ask your doctor if there is any written advice for carers and family members available • Recognise the warning signs of schizophrenia and know who to contact if you think your loved one is beginning to relapse • Learn how to cope with a crisis • Make sure you involve your loved one in making any decisions about their care • If your friend or family member does not realise they are il , go to see the doctor yourself and discuss your concerns • Don't hide away and hope it wil just disappear A21045 schizophrenia doc 2 28/5/04 12:47 pm Page 81 • Talk to others in the same situation• Try to encourage your loved one to take his or her medication. If they do not want to, try to understand their reasons and discuss ways to solve them • Try to help other friends and family members understand the il ness and to stay in touch• Do not neglect other family members. Often brothers and sisters of people with schizophrenia feel they are not getting their fair share of attention. This can breed resentment and jealousy • Don't be a martyr! You deserve to have a life as wel . Make sure you take enough time for yourself to do things you want to do. If you are feeling overwhelmed, ask your mental health team if there are anyrespite services available • Don't be a martyr! You deserve to have a life as wel . Make sure you take enough time for yourself to
do things you want to do. If you are feeling overwhelmed, ask your mental health team if there are
any respite services available
• Contact a support group. Sharing your experiences with others in a similar position can be a great help A21045 schizophrenia doc 2 28/5/04 12:47 pm Page 82 The search for information
It can be very difficult to remain involved in the care of someone with
schizophrenia if you do not know everything that is going on. Unfortunately,
family members often find themselves fighting for information about their loved
one's care. You may be denied this information because the person with
schizophrenia does not believe he or she is il ; does not want you to know he or she
is il ; or has turned against the family and is deliberately keeping you out of the
Because health professionals havea duty to respect theconfidentiality of their patients,there may be little you cando to remain informed aboutthe care of someone who isdetermined to shut you out.
This can lead to difficultsituations. For instance, yourfamily member may suddenlyturn up on your doorstep havingbeen discharged from hospital without you knowing. You should therefore try to make it clear both to your family member and his or her key workers that themedical decisions being taken are important to you as wel as the patient. A21045 schizophrenia doc 2 28/5/04 12:47 pm Page 83 Relapse-recognise the warning signs and symptoms
Experiencing a relapse of schizophrenia symptoms is distressing for everyone. The best prevention is
ensuring the person affected takes their medication as instructed. However, it is worth being sensitive to
the day to day changes in your loved one's behaviour so you can be prepared to deal with a possible
relapse. Learn to recognise the particular signs and symptoms that signal an impending crisis so you can
be prepared to give extra support and cope. These signals wil probably be the ones that first prompted
you to get help for your loved one.
Each person is different, but some of the common warning signs are:
➜ Moodiness, depression, extreme anxiety, excessive crying, laughing for no reason ➜ Hearing voices, unusual sensitivity to noise or light ➜ Losing sense of humour ➜ Becoming extremely active or inactive, sleeping excessively or hardly at al ➜ Avoiding social situations, dropping out of activities, refusing to go out, al owing relationships to deteriorate ➜ Saying irrational or inappropriate things, using peculiar words or making meaningless statements ➜ Strange postures, prolonged staring ➜ Wearing bizarre clothes, poor personal hygiene It is important to remember that the best way to prevent relapse is by taking medication as instructed. If he or she refuses, try towork out the reasons why. If side effects are an issue you may want to investigate alternative medications. A21045 schizophrenia doc 2 28/5/04 12:47 pm Page 84 Keep a diary
If you are looking after someone with schizophrenia it can also be very useful to keep a diary. This
can help you identify patterns of behaviour that might indicate that treatment is going wel , not so wel
or has been missed altogether. It may also help you to predict the onset of relapses.
Coping with a crisis
If someone close to you has already had one psychotic episode,
it is a good idea to learn how to react if it happens again. The table offers a few tips:
A21045 schizophrenia doc 2 28/5/04 12:47 pm Page 85 Coping with a crisis
➜ Avoid threats and ultimatums ➜ Remember you can always walk away ➜ Try not to shout ➜ Avoid criticisms ➜ Don't try to deceive ➜ Avoid arguments with other family members over what to do ➜ Don't stand if the person is seated ➜ Avoid direct continuous eye contact or touching ➜ Comply with requests that are reasonable ➜ Don't block the doorway or lock exit doors ➜ Speak in a normal tone ➜ Prepare a list of phone numbers for: - the family doctor - the psychiatrist - an emergency centre for psychiatric admissions ➜ Make sure you know which hospital to go to in case of an emergency ➜ Find out whom you can phone for support at any time of the day or night ➜ Decide who wil take care of other children A21045 schizophrenia doc 2 28/5/04 12:47 pm Page 86 One way of ensuring that you respect your loved one's wishes is to help them prepare an "Advance
directive". This is a statement which sets out how they would like their care to proceed should they
become too il to make the decisions themselves.
This may include:
➜ The name and contact details of a family member or friend who is to be given authority to act as an advocate on the
individual's behalf ➜ A list of the areas in which the advocate may make decisions. For example: – Medication– Other treatment– Finance– Housing ➜ A list of medications the individual would prefer to avoid Copies of the advance directive should be stored with the individual's medical notes, at their home and with a family member.
You might also suggest your loved one carries a copy in his or her wal et in case of emergency.
A21045 schizophrenia doc 2 28/5/04 12:47 pm Page 87 There were times when Helen wished that she was Now, of course, Helen knows a lot more about
the one who was sick. Maybe then she could lie
schizophrenia. She knows that Alice is trying real y hard to around watching TV al day. Maybe then she
get better and she knows that she wil need al the support wouldn't have to rush home from work to care for
her sister Alice. Maybe then her parents would pay So, Helen is trying not to criticise her sister quite so much.
her a little more attention.
She is learning to offer gentle, positive encouragement as she helps with simple daily tasks like getting dressed in the Helen knew it wasn't right to feel this way. It wasn't Alice's fault morning or taking a shower. Already Alice seems to be she had schizophrenia and Helen felt guilty for resenting al taking more care with her appearance.
the attention that her sister was getting. Helen also helps Alice deal with the team of doctors and It was just that things were so much easier before Alice got il .
nurses who have been managing her care. She Back then Helen would go swimming every day after work.
accompanies her to doctor's appointments and makes sure She would see her friends at the weekend and often just drop that al the relevant information (such as family history) is everything and go away for a few days. Best of al , every now taken into account. She notes down when Alice's medication and again she would meet up with Alice and the two sisters should be taken and what side effects to look out for. And would travel up to London to go shopping in Oxford Street.
she has made sure she recognises the signs of relapse and knows what to do about it. But when Alice started getting il she didn't want to go shopping any more. In fact she didn't seem to want to do Slowly Alice is becoming more independent and Helen is anything any more.
proud of the important part she knows she has played in her sister's recovery. But there is something the community "You're so boring and weird these days," Helen shouted at psychiatric nurse said on his last visit that has been playing her. "It's no wonder you haven't got any friends." Helen feels on her mind. "Make sure you have a life too," he said.
guilty about that too.
It sounds like good advice. Tonight Alice wil cook her ownfood and Helen is going swimming with friends after work. A21045 schizophrenia doc 2 28/5/04 12:47 pm Page 88 The thing that turned everything around for me
I did lose lots of friends during my il ness, but I also found out was finding the right medication. That was real y
who my real friends are. I've had difficulties with relationships important because that real y acted as a gateway
and it has also been quite hard for me to get a job. I've had to to lots of other services that I've been able to
battle with the stigmatisation that employers usual y havetowards people who have mental health problems, access. If I hadn't had the medication I wouldn't
particularly schizophrenia because it has very bad press.
have been wel enough to make use of the groups
and activities available at the day hospital or the
At the moment I'm senior project worker at the User therapy that I was receiving. I wouldn't have been
Employment Programme (UEP) at Springfield Hospital and able to recognise the care and support my family
have recently also been offered the role of Coordinator of the have given me.
UEP team. I support people with mental health problems towork within our trust and I support them to get in the job in the first place but also to carry on keeping the job once it has Lots of other things real y helped, like having supportive been secured. I'l give them support and advice throughout friends as wel as family, having a secure place to live, having their work and career if they so choose. I've also just finished a enough money to survive, and obviously having a real y good Masters in Occupational Psychology.
psychiatrist has been real y important - being able to be treated by somebody that I trust.
Schizophrenia is misunderstood by society at large but hopeful y people wil get more accurate information through I ended up taking a year out of university but luckily was the media, through school and education, so hopeful y things invited to re-sit the exams that I had failed. This was probably wil start to turn around soon." one of the biggest turning points in my life - when I turned the exam paper over and realised that I was actual y going to get Emma Harding, Senior Project Worker and Coordinator,
back to university and I wasn't going to be working in a User Employment Programme, Springfield Hospital, UK
supermarket for the rest of my life. It was a real y bigachievement for me.
A21045 schizophrenia doc 2 28/5/04 12:47 pm Page 89 Chapter 9
A21045 schizophrenia doc 2 28/5/04 12:47 pm Page 90 This describes an episode of The general name for medications used to Schizophrenia is referred to a chronic schizophrenia at its peak, or when treat schizophrenia. These are normal y when the symptoms persist long-term.
symptoms are at their most severe.
divided into ‘typical', ‘atypical', including anew type of atypicals.
Functions of the brain involved in thinking, Taking medication according to the remembering and processing information.
treatment dosage and schedule instructed A type of antipsychotic used to treatby your doctor. This is also sometimes schizophrenia. Most atypicals were Delusion
referred to as compliance.
introduced in the 1990s and have fewer A fixed belief that has no basis in side effects than typical antipsychotics.
reality and is not affected by rational They are general y considered the first argument or evidence to the contrary.
‘Affect' is a medical term for emotion.
choice of treatment for schizophrenia.
People experiencing delusions are Affective flattening is when emotions are often convinced they are a famous blunted or limited. This is a ‘negative' person, are being persecuted, or are symptom of schizophrenia.
Inability to start or finish basic tasks. A capable of extraordinary ‘negative' symptom of schizophrenia.
accomplishments. The delusions often have a link to God or religion.
Pacing and a total inability to sit stil . If Blunting of affect
forced to sit stil the person experiences Lack of emotion. The voice may become extreme anxiety and agitation. monotonous and the expression on the This is an injection given once every face may not change.
two or three weeks and means that it is not necessary to take the medication An inability to speak. Alogia is a ‘negative' Catatonia or catatonic behaviour
symptom of schizophrenia.
An extreme lack of reaction to the surrounding environment. The person may become rigid or seemingly The inability to enjoy activities that ‘paralysed' or appear to be in a trance.
previously gave pleasure.
A21045 schizophrenia doc 2 28/5/04 12:47 pm Page 91 Glossary D-N
A neurotransmitter in the brain that plays The science that studies the principles The physical and chemical processes of a role in the way we feel pleasure and and mechanisms of heredity, particularly changes in the body tissue that al ow emotion. Many of the symptoms of the way traits are passed from parents to nutrients, such as from food to be schizophrenia are believed to be caused their children. Genetics may play a role in absorbed into the blood after digestion.
by an excess dopamine in certain parts the development of schizophrenia.
The process involves the passage of food of the brain and low levels in other parts.
Research to study the association of from the gut to the excretory organs such Antipsychotics work by either blocking or schizophrenia with genetics is ongoing.
as the kidneys and digestive system.
stabilising dopamine levels in the brain.
Metabolic disorders that can often affect people with schizophrenia include This refers to a person's awareness of diabetes and high cholesterol.
Movement disorders such as the presence and meaning of symptoms uncontrol able tremor, shaking, and their role in producing il ness.
restlessness and facial movements.
Although insight alone may not ‘cure' A rare disorder in which a person Extrapyramidal symptoms are a side il ness, emotional acceptance of one's displays two or more distinct and effect of the older, typical antipsychotic il ness often helps people manage and separate personalities, often of different medications (referred to as EPS).
reduce the impact of their symptoms.
ages and genders. This disorder is quiteseparate and different from Generic name
Long-acting (depot) injection
schizophrenia, but is often wrongly The molecular name of the medicine is This type of injection slowly releases the assumed to be similar.
referred to as the generic name. It medication into the muscle slowly. It is indicates the chemical makeup of the usually used for people who have medication. Al medicines are referred by difficulty taking medication as A group of schizophrenia symptoms such their generic name in this handbook. The prescribed, or refuse medication.
as low motivation, lack of concentration manufacturer of the medication markets Injections may be given every 2-4 and withdrawal from family and friends.
the medicine under a particular name weeks, usually in hospital.
These symptoms are sometimes cal ed the brand name. The brand name considered harder to treat than positive wil almost always be different to the symptoms, and are often responsible for A dosage of medication that, taken at much of the loneliness and isolation that regular intervals, helps to control people with schizophrenia feel. Some of
the negative symptoms are believed to be 91
linked to low levels of dopamine in certainparts of the brain.
A21045 schizophrenia doc 2 28/5/04 12:47 pm Page 92 Glossary N-P
An old term for ‘Antipsychotics' that is stil A nurse with specialised training and A person who holds a degree in frequently used (See Antipsychotics).
experience in dealing with psychiatric or psychology. Psychologists involved with mental il ness.
patient care are cal ed clinical psychologists. They may provide Therapy that involves building skil s and psychotherapy but are not authorised to expressing feelings through a variety of A medical doctor who specialises in prescribe medication. Compare to creative tasks such as handicrafts psychiatry. Psychiatrists are trained in (pottery, painting, carpentry) or role medicine, receive specialised training in playing, music or poetry reading.
mental il ness, and are qualified to Occupational therapy can also be used prescribe medication for schizophrenia.
The science and study of the mental to help people build practical skil s that Compare to Psychologist.
processes and behaviour of people.
can help them move into employment.
The medical science that deals with the A major mental disorder in which a An individual who comes to the hospital origin, diagnosis, prevention and person's ability to think, respond to receive medical care such as receiving treatment of mental and emotional emotional y, remember, communicate, medication or therapy. An out-patient interpret reality and behave appropriately does not need to be admitted in the interferes with their ability to cope with the ordinary demands of life.
A talking therapy introduced by Dr Sigmund Freud which involves the Psychosomatic il ness
A group of symptoms including analysis of dreams, childhood Physical symptoms that may be caused hal ucinations (seeing, hearing, tasting or experiences, etc. to overcome present by stress or other mental, non-physical smel ing things that aren't there), problems. It is founded on the belief that delusions (believing things that cannot an individual's problems are mainly 92possibly be true) and paranoia (extreme caused by unconscious drives and Psychotherapy
suspiciousness). These symptoms can be negative early childhood experiences.
The treatment of mental and emotional extremely disturbing to the person problems through discussions between a experiencing them, but tend to respond patient and therapist. Supportive therapy wel to antipsychotic medication.
and family therapy are types ofpsychotherapy.
A21045 schizophrenia doc 2 28/5/04 12:47 pm Page 93 of individuals and their families in dealing Special places on nerve endings capable A type of employment or vocational with various social or emotional issues that of responding to a chemical or physical programme that mimics a real work are a result of the il ness.
stimulus from within the body or in the situation. Often, contracts are received environment. Some medicines are known to increase sensitivity in one or several from local businesses and individuals are See Multiple personality receptor types. Others can block or trained and supervised to do the work. Job stimulate specific receptors.
types vary, depending on the contract and local arrangements, but often include In the context of mental il ness, stigma factory work or clerical work. Although the refers to society's negative assessment of Rehabilitation programs are designed to main aim is to teach basic work skil s, people with a mental health problem in help people return to their previous level of individuals often receive some modest general, often reflected in the public's functioning after a disabling il ness, injury, payment for their work.
negative treatment of such people.
addiction or prison sentence. The aim is toteach skil s that wil al ow the person to live The first antipsychotic medications, A group of people who meet to improve introduced in the 1950s. Although ef ective their situation through discussion and against the positive symptoms of The reduction of symptoms. In special activities. Unlike group schizophrenia, typical antipsychotics tend schizophrenia this means the partial or psychotherapy, they are not usual y led by to cause troublesome movement disorders complete decline in ‘positive' and ‘negative' a therapist.
such as tremor and shaking. Although ef ective against the positive symptoms of schizophrenia, typical antipsychotics have An injection of antipsychotic medication a number of side ef ects and only limited A mental il ness that af ects one in 100 often used during an emergency situation, ef ect against the negative symptoms of people worldwide. It is characterised by such as an acute episode, when schizophrenia. In addition, they have no ‘positive' symptoms such as delusions and symptoms need to be control ed quickly.
ef ect on cognitive symptoms.
hal ucinations, ‘negative' symptoms such The ef ect usual y wears of in 12-24 hours.
as lack of motivation and withdrawal from Vocational counsel ing
family and friends, and ‘cognitive' Counsel ing that helps a person search A person with specialised training to help symptoms such as muddled thinking.
and train for a job.
Schizophrenia is treated with antipsychotic individuals with their social adjustment. In medication and other supportive therapies. schizophrenia, this may involve counsel ing A21045 schizophrenia doc 2 28/5/04 12:47 pm Page 94 Sources of
A21045 schizophrenia doc 2 28/5/04 12:47 pm Page 95 ➜ A checklist for people with mental health problems.
➜ Schizophrenia: A Handbook For Families. Health Canada Royal College of Psychiatrists. 2004.
in Co-operation with the Schizophrenia Society of ➜ Advances in Psychiatric Treatment (2000), vol. 6, pp. 93-101. ➜ Birchwood M, Spencer E, McGovern D. Schizophrenia: Early Warning Signs APT (2000), vol. 6, p. 93. ➜ Expert Consensus Treatment Guidelines for Schizophrenia: A Guide for Patients and Families. The ➜ Schizophrenia: help for partners and families.
National Alliance for the Mentally Ill. 1999. ➜ Guidance on the Use of Newer (Atypical) Antipsychotic Drugs for the Treatment of Schizophrenia. Technology Appraisal No.
➜ Target Schizophrenia. The Association of the British 43. National Institute for Clinical Excel ence 2002. Pharmaceutical Industry. May 2003. ➜ Information guide on schizophrenia. Schizophrenia ➜ The Sane Guide for Carers. Sane Australia. Ireland. 1996.
➜ The Sane Guide for Consumers. Sane Australia. ➜ Mind. Understanding schizophrenia.
➜ The Sane Guide to Fighting Stigma. Sane Australia. ➜ The Sane Guide to Schizophrenia. Sane Australia. ➜ National electronic Library for Mental Health.
➜ Andrews G, Creamer M, Crino R, Hunt C, Lampe L, Page A. The Treatment of Anxiety Disorders: Clinician Guides ➜ Only the Best. Medicine for the Treatment of Psychosis.
and Patient Manuals. 2nd Edition. Cambridge University Rethink 2002.
➜ Rethink http://www.rethink.org.
➜ Treating and managing schizophrenia (core ➜ Schizophrenia Help is at Hand. Royal College of interventions): Understanding NICE guidance – Psychiatrists. 2001. Information for People with Schizophrenia, theirAdvocates and Carers, and the Public. ➜ Schizophrenia.com National Institute for Clinical Excellence 2002. A21045 schizophrenia doc 2 28/5/04 1:05 pm Page 96 Side effects of antipsychotic medication
How it makes you feel
What the doctor cal s it
Extra-pyramidal symptoms (EPS) including:
Uncontrol able trembling
Abnormal body movements
Activation, Non-sedating Low glucose level, weakness
Diabetes or impaired glucose tolerance Unnatural heart rate
QTc disturbances Twitching of tongue, face and jaw
Tardive dyskinesia Dry mouth, constipation, blurred vision, difficulty urinating
Anticholingergic side effects Potential y fatal blood condition causing fever, sore throat,
mouth ulcers, anal ulcers and low immunity to infections
Feeling drowsy or sleepy
Leaking breasts, irregular periods, erectile dysfunction, infertility
Prolactin elevation Weight gain
Excessive weight gain High levels of cholesterol leading to the increased risk of heart attack
A21045 schizophrenia doc 2 28/5/04 12:48 pm Page 97 Inside back cover Online information and support
Schizophrenia web community Schizophrenia family handbook Basic facts about schizophrenia Pharmacotherapy of schizophrenia Personal experience about schizophrenia World fellowship for schizophrenia and allied disorders Reference Manual for Families and Caregivers A21045 schizophrenia doc 2 28/5/04 12:48 pm Page 98 Outside back cover
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