Schizophrenia Guide EN PDF
Schizophrenia Guide EN PDF
Schizophrenia Guide EN PDF
An
information
guide
revised edition
Schizophrenia
An
information
guide
Debbie Ernest, MSW, RSW
Olga Vuksic, RN, MScN
Ashley Shepard-Smith, MSW, RSW
Emily Webb, MScOT, OT Reg. (Ont.)
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Contents
Acknowledgments v
Introduction vi
1 What is schizophrenia? 1
How does schizophrenia begin and what is its course?
What are the symptoms of schizophrenia?
How is schizophrenia diagnosed?
Co-occurring issues
Schizophrenia and violence
Reference 67
Resources 68
chapter title v
Acknowledgments
The authors thank the people who shared their personal experiences
of schizophrenia with us and permitted us to include them in
this guide: Ann, Gilda, Moustafa Ragheb, Moshe Sakal and S. We
also thank those who reviewed earlier drafts of the guide: patient
and family reviewers Ann, Gilda, Moustafa Ragheb, Moshe Sakal,
V.C.C. and Henry Yip; and professional reviewers April Collins,
MSW, RSW; Sean A. Kidd, PhD, CPsych, CPRP; Yarissa Herman,
DPsych, CPsych; Mike Pett, MSW, RSW; Gary Remington, MD,
PhD, FRCPC and John Spavor, MSc (OT).
Introduction
This guide is for people with schizophrenia, their families and
friends, and anyone else interested in better understanding the ill-
ness and what it is like to experience it.
The guide should answer many of the questions you may have
about schizophrenia. It can also help you to know what questions
to ask treatment providers. You may wish to read it from beginning
to end, or to dip into it. Keep in mind, though, that some terms
and concepts are explained in the opening chapters.
1 What is schizophrenia?
1. PRODROMAL PHASE
When symptoms develop gradually, people may begin to lose inter-
est in their regular activities and withdraw from friends and family
members. They may become confused, have trouble concentrating
and feel listless and apathetic, preferring to spend most of their
days alone. They may also become intensely preoccupied with
certain topics or ideas (e.g., persecution, religion, public figures).
Family and friends may be upset with this behaviour, not under-
standing that it is caused by illness. Occasionally, these symptoms
reach a plateau and do not develop further but, in most cases, an
active phase of the illness follows. The prodromal period can last
weeks, months or even years.
2. ACTIVE PHASE
During the active, or acute, phase of the illness, people typically
experience symptoms of psychosis, such as delusions, hallucinations,
jumbled thoughts, and disturbances in behaviour and feelings.
However, these symptoms can also be caused by other mental and
physical health conditions (e.g., bipolar disorder, drug-induced
psychosis, head injury), and so other factors are considered in diag-
nosing schizophrenia (see page 10).
3. RESIDUAL PHASE
After an active phase, when symptoms have settled down, people
may be listless and withdrawn, and have trouble concentrating.
The symptoms in this phase are similar to those in the prodro-
mal phase.
4 Schizophrenia: An information guide
POSITIVE SYMPTOMS
The term “positive” is used to describe symptoms that are “added
on” by the illness. Positive symptoms include delusions, hallucina-
tions and disorganized thought, speech and behaviour.
What is schizophrenia? 5
Delusions
Delusions are firmly held false beliefs that have no basis in fact or
in the person’s culture. The person feels so strongly about these
beliefs that they will not accept other people’s attempts to argue
against or disprove the beliefs. Delusions are sometimes under-
stood to be extreme distortions and/or misinterpretations of the
person’s perceptions or experiences. Common delusions among
people with schizophrenia include the beliefs that:
·· other people are following or monitoring them or trying to harm
them (also referred to as paranoia)
·· their bodies or thoughts are being controlled by outside forces
·· ordinary events have special meaning for them (e.g., believing
that a newspaper story, song lyric or TV character is communicat-
ing special messages intended for them)
·· they are especially important or have unusual powers
·· other people can read their thoughts.
Hallucinations
Hallucinations are disturbances in perception. If a person hears,
sees, tastes, smells or feels something that does not actually exist,
they are hallucinating. The most common hallucinations among
people with schizophrenia are auditory; that is, they hear noises or
voices, often talking to them or about them. These voices may be
experienced as harmless, with the voices commenting on things
or people around the person. For some, the voices may even be
comforting. However, it is more common for the voices to be
frightening or humiliating, causing the person to be distressed.
Voices may also be experienced as commands—ordering the person
to perform some kind of action. How distressing the voices are
can depend on what the voices are saying and on the meaning the
person makes of what they are hearing.
6 Schizophrenia: An information guide
Disorganized behaviour
Schizophrenia can affect a person’s ability to complete everyday
tasks such as bathing, local travel, basic school and work activities,
buying groceries and preparing food. People with schizophrenia
may be unable to plan their days and to follow through with
ordinary tasks.
They may also behave in ways that seem unusual to others. For
example, they may become agitated for no apparent reason, or be
uninhibited in social situations.
NEGATIVE SYMPTOMS
Negative symptoms of schizophrenia “take away” from a person’s
usual ability to accomplish tasks and enjoy life. They include re-
duced motivation, social withdrawal, reduced emotional expression,
loss of interest and pleasure, and reduced verbal communication.
Reduced motivation
A person with schizophrenia may have problems finishing tasks
or making and carrying out plans. They may also have less energy
and drive, both before and after an active phase of the illness.
Some people misinterpret this behaviour as laziness or as “not
wanting to try.” They may believe the behaviour is intentional, and
become frustrated with the person. But this behaviour is related to
the illness and not to the person’s character.
Social withdrawal
One of the earliest symptoms that many people with schizophrenia
experience is a change in their sensitivity toward others. A person
may become more sensitive to and aware of other people, or they
may withdraw and pay little or no attention to others. The person
may become suspicious and worried that others are avoiding
them, talking about them or feeling negatively toward them. The
person may feel safer and calmer being alone. They may also
become so absorbed in their own thoughts and sensations that
they lose interest in the feelings and lives of others. They may
spend more time alone in their room, not engaging with family
or friends.
8 Schizophrenia: An information guide
All that happened was that she said: I’m not going
to school any more. She couldn’t cope with it. She
couldn’t articulate what she was feeling because she
didn’t know. I would say, are you okay? And she’d say,
yeah. I did not see how much she was struggling. She
isolated herself. She was trying to figure it out. She was
just in her room. For her it was very inward. — Gilda
on page 18). Anxiety may also occur, especially if the person is feel-
ing distress as a result of their symptoms. Some may also feel anger.
Ambivalence
Ambivalence means having conflicting ideas, wishes and feelings
toward a person, thing or situation. A person with schizophrenia
may feel uncertainty and doubt. It may be hard for them to make
up their mind about anything, even common decisions such as
what to wear in the morning. Often, even when they are able to
make a decision, they find it hard to stick with it.
Lack of insight
People with schizophrenia may not consider what they are experi-
encing to be an illness. This lack of insight or awareness may be
present throughout the illness, and can contribute to a decision to
reject a recommended treatment plan. Family members may find
this particularly difficult to understand and accept.
The type and severity of symptoms can vary among people with a
diagnosis of schizophrenia.
Research has shown that the earlier a person can get a correct di-
agnosis and treatment for schizophrenia, the better the long-term
outcome. Family involvement and advocacy can help ensure that
the person gets access to a diagnosis and care as soon as possible.
Co-occurring issues
People with schizophrenia often have other issues at the same
time. These may include physical health problems, substance use
or a history of traumatic events in their lives. Even on its own,
recovery from schizophrenia can be a significant challenge for the
person with the illness and their family. When these co-occurring
issues are present, their treatment should be integrated into the
overall recovery plan.
PHYSICAL HEALTH
In general, people with schizophrenia have poorer health and are
at higher risk for premature death than the overall population.
The most common cause of death is cardiovascular disease. This
is partly due to lifestyle factors such as obesity, smoking, diabetes,
high blood pressure and high cholesterol. Additionally, some of
the medications used to treat schizophrenia can cause weight gain
or worsen other risk factors, which can lead to diabetes and other
serious health problems.
TRAUMA
Childhood trauma, in particular childhood sexual abuse, may
increase the risk that schizophrenia will develop in a person who
has other risk factors for the illness. (Risk factors are described in
Chapter 2.)
POVERTY
Poverty increases the risk of schizophrenia, and schizophrenia
increases the risk of poverty. Poverty can have a negative impact
16 Schizophrenia: An information guide
STIGMA
Public attitudes, stereotypes and beliefs about schizophrenia can
cause stigma—that is, negative and inaccurate beliefs that can
have a profound impact on those living with the illness. Common
beliefs—that people with schizophrenia are dangerous and violent,
or that they are irresponsible and lazy—have a negative impact
on individuals’ work, housing and social opportunities. Stigma is
mostly a result of people misunderstanding schizophrenia.
There are strategies that can help people with schizophrenia and
their families to cope with and combat stigma. They include:
·· developing a recovery plan
·· connecting with peers and family
·· maintaining a sense of hope for the future
·· educating oneself and others about schizophrenia
·· challenging negative beliefs about oneself
·· critically reviewing information about schizophrenia portrayed in
the media, and encouraging others to do the same
·· getting involved in anti-stigma initiatives, such as those led by the
Schizophrenia Society, the Canadian Mental Health Association
(cmha) and the Mental Health Commission of Canada.
SUICIDE
People with schizophrenia are six times more likely to attempt
suicide than the general population. However, this does not mean
that a diagnosis of schizophrenia will lead to suicidal behaviour
or death by suicide. There are particular risk factors for suicide,
including:
·· a history of suicidal thoughts or attempts
·· positive symptoms (delusions, hallucinations, disorganization of
thought, speech or behaviour)
·· co-occurring depression or substance abuse
·· lack of insight and awareness of schizophrenia’s effect on one’s
mental state
·· lack of treatment or downgrading of the level of care
·· negative beliefs about medications; not taking medications as
prescribed
·· chronic pain or illness
·· hopelessness
·· a family history of suicide
·· social isolation or limited external supports
·· agitation and impulsivity
·· childhood psychological trauma.
Biological theories
Biological theories of the causes of schizophrenia suggest that:
·· Genetics plays a role—the risk of developing schizophrenia is
higher when a close family member has the illness.
What causes schizophrenia? 21
Environmental theories
Environmental factors are those that exist outside of a person’s
body, in their surroundings. Biological factors, such as having a
family member with schizophrenia, have long been recognized as
important. However, we now know that the picture is more complex.
Stressful life events and other environmental factors increase the
risk that someone with genetic vulnerability will develop the illness.
Research into the role of environmental factors suggests that:
·· People who have experienced social hardship or trauma, particu-
larly during childhood (e.g., sexual abuse or lengthy separation
from parents), have a higher risk of developing schizophrenia.
·· Cannabis use increases the risk of developing schizophrenia in
youth and of triggering an earlier onset of the illness in people
who are genetically vulnerable.
·· Being born or spending one’s childhood in an urban environ-
ment, rather than a rural one, increases the risk of developing
schizophrenia. This may be due to environmental factors such as
social isolation and overcrowding.
22 Schizophrenia: An information guide
Medication
The main medications used to treat symptoms of schizophrenia
are antipsychotics. They are often used in combination with medi-
cations for other mental health symptoms, such as mood stabiliz-
ers, sedatives and antidepressants,1 and medications to help with
the side-effects of antipsychotics.
TYPES OF ANTIPSYCHOTICS
Antipsychotic medications are generally divided into categories:
first-generation (also called typical antipsychotics) and the newer
second- and third-generation (atypical).
2 Medications are referred to in two ways: by their generic name and by their
brand or trade name. Brand names available in Canada appear here in brackets.
Older medications are generally referred to by their generic name.
26 Schizophrenia: An information guide
SIDE-EFFECTS
Some people experience no side-effects. If they do occur, they may
be noticed within hours, days or weeks of starting treatment. Side-
effects vary depending on the medication and on the person taking
it. Common side-effects include fatigue, sedation, dizziness, dry
mouth, blurry vision and constipation. Though they are bother-
some, most side-effects are not serious, and diminish over time.
Some people accept the side-effects as a trade-off for the relief these
medications can bring. Others find them distressing and may choose
Treatments for schizophrenia 27
Movement effects
Some people experience tremors, muscle stiffness and tics. Usually,
the higher the dose, the more severe these effects are. The risk of
movement effects (also called extrapyramidal effects) may be lower
with the second-generation medications than with the older drugs.
Other drugs (e.g., benztropine [Cogentin]) can be used to control
the movement effects.
Dizziness
Dizziness may occur, especially when getting up from a sitting or
lying position, because of temporary lowered blood pressure. Get-
ting up slowly can help prevent dizziness.
Cardiac arrhythmias
Some medications can cause arrhythmias, where the heart beats
too fast, too slow or with an irregular rhythm. Cardiac arrhythmias
can increase the risk of heart disease.
28 Schizophrenia: An information guide
Weight gain
It is not yet fully understood why people who take antipsychotics
put on weight. Whatever the cause, weight gain can increase a
person’s risk of diabetes and heart disease. These effects are known
as metabolic effects. A healthy diet and regular exercise can help
to limit weight gain.
Diabetes
Schizophrenia is a risk factor for diabetes. Antipsychotic drugs can
increase this risk.
Tardive dyskinesia
Tardive dyskinesia (td) is a condition that causes people to have
repetitive involuntary movements of the tongue, lips, jaw or
fingers. The risk of td is highest with first-generation antipsychot-
ics, although it can occur with the newer drugs as well. If td does
develop, there are ways to identify it at an early stage and to modify
treatment. This will reduce the risk that the condition will continue
or worsen.
Electroconvulsive therapy
When symptoms of schizophrenia are not relieved by medication,
or when a person with schizophrenia is severely depressed, electro-
convulsive therapy (ect) may be advised.
ect does not resemble the shock therapy portrayed in older films
and TV shows. Now patients are given a muscle relaxant and a
general anesthetic before a mild electrical current is applied to one
or both sides of the brain. The person being treated shows little vis-
ible movement. A course of ect consists of a number of treatments
that most often are given three times a week. The total number of
treatments, and how often they are given, is decided in consultation
with a physician.
PSYCHOEDUCATION
Psychoeducation provides information to help people deal with a
mental health condition, such as how to manage symptoms and
medication side-effects, and how to prevent relapse. It also provides
information on the recovery process, such as how to maintain a
sense of well-being and how to develop skills to manage stress and
solve problems. Psychoeducation can be offered individually or
in groups, and may be tailored to the person with a mental health
condition or to family members and friends.
32 Schizophrenia: An information guide
THERAPIES
Several effective psychosocial therapies for schizophrenia, in indi-
vidual or group format, are now available to complement treatment
with medication. Group therapy can allow you to learn about other
people’s experiences with the illness, which can help to reduce
isolation and promote recovery. Discuss your needs with your ser-
vice providers to determine which kind of therapy is best for you.
Peer support
Peer support workers are people with lived experience of a mental
health condition who are trained to provide support that is based
on empathy and understanding. Having gone through their own
personal recovery, peer support workers are able to help you plan
and move through the steps of your own recovery. Support focuses
on your strengths, rather than the illness, and on self-empowerment,
self-advocacy and promoting hope. Peer support workers are impor-
tant members of the treatment team. Peer support may be available
one-on-one or in groups.
34 Schizophrenia: An information guide
Complementary approaches
You may wish to add other approaches to conventional treatments.
Examples of complementary approaches include herbal medicine,
acupuncture, homeopathy, naturopathy, meditation, yoga, Ayurveda
(an ancient medical system from India), nutritional supplements
and vitamins. However, none of these approaches has been tested
to determine the effect on the symptoms of schizophrenia. Check
with your treatment team about any complementary or alternative
therapies you are taking or thinking about trying—especially
herbal medicine or vitamins, which may interfere with the effec-
tiveness of medications.
Hospitalization
People with schizophrenia may need to be admitted to hospital at
times—for example, if the person is aggressive or suicidal or is not
looking after their own basic needs.
36 Schizophrenia: An information guide
The law also allows any doctor to admit a person to hospital invol-
untarily. This means the person may not agree that he or she needs
help, and does not want to be in the hospital. This can happen if
the doctor has assessed the person and believes there is a serious
risk that the person:
·· will physically harm himself or herself, or
·· will physically harm someone else, or
·· has shown or is showing lack of competence to care for himself
or herself.
If no doctor has seen the person, families also may ask a justice of
the peace (a local public officer with legal authority) to order a psy-
chiatric assessment. They must provide convincing evidence that
the person’s illness is a danger to himself or herself or to others. The
police are sometimes needed to help to get a person to hospital.
For more information about mental health laws and patient rights
in Ontario, see the website of the Psychiatric Patient Advocate Office
www.sse.gov.on.ca/mohltc/ppao.
Hospital, intensive support and community support 37
INPATIENT TREATMENT
A typical hospital stay may last between a few days and several
weeks. During this time, goals and plans for treatment and recovery
will be identified.
Patients who need support in the community and who meet other
criteria may be referred to an act team by their treatment team.
The local office of the cmha or another mental health agency can
tell you more about act teams in your community. act teams are
more common in larger cities.
Community supports
Programs may be available to help people with schizophrenia live
in their own community. The kinds of services offered vary with
location, but can include financial, housing, education, employment
and social support. The Schizophrenia Society and cmha keep lists
of local programs (e.g., peer support or consumer/survivor initiatives,
drop-ins or support groups.) Your treatment team can also help to
connect you to the supports you need.
CONSUMER/SURVIVOR INITIATIVES
People who have used mental health services sometimes choose
CLUBHOUSES
Clubhouses are local community centres for people living with
mental health issues. Members develop skills and work closely
with peers and support staff to run the daily operations of the
clubhouse. They prepare meals, build social connections, create
newsletters, track members’ participation and more. Clubhouses
also offer support to help people transition into employment.
Clubhouses differ from traditional mental health services in that
consumer/survivors partner with staff to run the clubhouse, rather
than simply receiving services from staff.
DROP-IN CENTRES
Drop-in centres focus on providing recreational and social oppor-
tunities rather than employment opportunities. They may have a
structured schedule of recreation, meals and educational sessions,
and are typically open to anyone. They can also be used as a place
to rest, meet up with friends, or use a phone, computer, shower or
laundry equipment. Drop-in centres can often help link you with
other community supports.
SUPPORT GROUPS
Self-help groups (also known as mutual aid or peer support groups)
are made up of people who have a common concern, such as a
mental health issue. These groups are usually led by people with
lived experience of mental health problems and are open-ended,
so you can join or leave at any time. Group members meet to give
and receive support, and to exchange coping and problem-solving
strategies and other information. Support groups help members to
feel connected through sharing their experiences with others who
can understand what they are going through.
42 Schizophrenia: An information guide
What is recovery?
Psychiatry has changed over time, and so has the expected role of
people receiving mental health services. Historically, it was thought
that schizophrenia was a chronic and deteriorating condition and
that people needed to be looked after, often in institutions, for the
rest of their lives. This way of thinking has shifted.
·· Get the right amount of sleep. If you feel you are not getting
enough sleep, or that you are sleeping too much, talk to your
psychiatrist, family doctor or case manager about education and
treatment options for improving your sleep.
·· Reduce or stop substance use. Consider the role that alcohol and
other drugs play in your life, and how they affect your mental and
physical health and social relationships. Substance use can make
it harder to reach recovery goals and to achieve and maintain
wellness. Look to your treatment team for help with addressing
substance use issues.
1 Although this chapter uses the terms “family,” “family member” and
“relative,” the information can also apply to friends.
50 Schizophrenia: An information guide
can make an important difference in the quality of life for people with
schizophrenia, and in helping them to achieve their recovery goals.
Common concerns
WILL MY FAMILY MEMBER LIVE A PRODUCTIVE
AND HAPPY LIFE?
With treatment and support, people with schizophrenia can and
do live productive and happy lives. However, the illness can limit a
person’s functioning, and the recovery process takes time. People
with schizophrenia, or any illness, do best when given time to heal.
Reducing your relative’s stress may help to prevent another active
phase of the illness. Daily responsibilities should be increased
gradually. Your patience, understanding and support will help your
relative to reach their full potential.
Helping your relative to develop insight into their illness can take
time. Be patient, and encourage your family member to talk about
their feelings. If the person is resistant to talking about the illness,
start with an area of their life that is affected by the illness, and ask
about ways to help. Families who have experienced this situation
say that it is best not to challenge their family member’s thoughts,
but rather to work on a mutually agreed issue. Many people do
develop insight into their illness, though some may not.
It can be very difficult to watch the person who is ill struggle with-
out trying to convince them to “take your medication” or “talk to
your doctor.” Repeated attempts to convince and cajole can lead to
heated arguments and power struggles. If you are very close to the
person with schizophrenia, and yet you feel that they may not be
open to your observation that something is wrong, it may be more
effective to have another trusted person approach them.
Your relative’s treatment team may be able to help. If you have the
person’s permission to share information with the treatment team,
or if you are the person’s substitute decision maker, ask the team
to work with you and your relative to understand why he or she
is isolated, and to generate ideas for spending more time in the
community. If your family member experiences paranoia, the treat-
ment team may be able to suggest ways to decrease the person’s
distress and triggers.
People usually show warning signs that they are thinking of suicide
before they attempt or die by suicide. If you can recognize suicidal
thinking and other warning signs, you will be better prepared to act
quickly and competently in times of crisis. Some of these warning
signs are listed below.
·· Help your relative to have a positive outlook for the future. Focus
on your relative’s strengths and goals, rather than the illness. Iden-
tify factors that can help to protect them from relapse. Examples of
protective factors include:
-- strong family and community support
-- limiting use of drugs and alcohol
-- getting the appropriate amount of sleep
-- reducing stress
-- taking medication as prescribed.
Work with your family member to identify these protective
factors early on and help to keep them in place. Encourage the
person to make and reach goals for the future.
·· Educate yourself about the illness. Learn all you can about schizo-
phrenia, especially in the early stages of treatment. It will help
you to support your relative, and also to get the support you
need. The better informed you are about your relative’s illness,
the better prepared you will be to navigate the treatment system
and to promote the person’s recovery. A better understanding of
60 Schizophrenia: An information guide
the illness can also help you come to terms with what it means
to have a family member with schizophrenia. Just as important,
knowing more will make it easier for you to talk about the illness
and to educate others about how they can help to support your
relative, and you.
·· Respect your relative’s wishes (e.g., how often you contact their
treatment team).
·· Ask for specific information. If you don’t understand what you
are being told, don’t be embarrassed. Ask for clarification.
chapter title 63
7 Explaining schizophrenia
to children
the child may assume he or she is the cause of the parent’s illness.
There are three main areas that are helpful for parents to cover
when speaking with children about schizophrenia:
·· Reassure the child that he or she did not make the parent or
family member get this illness. Children need to know that their
actions did not cause their loved one to develop the illness.
·· Reassure the child that the adults in the family and other people,
such as doctors, are trying to help the affected person. It is the
Explaining schizophrenia to children 65
Reference
Leamy, M., Bird, V., Le Boutillier, C., Williams, J. & Slade, M. (2011).
Conceptual framework for personal recovery in mental health:
Systematic review and narrative synthesis. British Journal of Psy-
chiatry, 199 (6), 445–452.
68 Schizophrenia: An information guide
Resources
WEBSITES
AMI-Quebec Action on Mental Illness
amiquebec.org
Peerzone
www.peerzone.info
Anxiety Disorders
Bipolar Disorder
Cognitive-Behavioural Therapy
Depression
Dual Diagnosis
Obsessive-Compulsive Disorder
Website: www.camh.ca
Disponible en français.
3973k / 11-2017 / PM117
ISBN 978-1-77052-619-8