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Bipolar disorder (also known as manic-depressive illness) is a severe biological disorder that affects approximately 1.2% of the adult population (more than 2.2 million people in the United States). Although the symptoms and severity vary, bipolar disorder almost always has a powerful impact on those who have the illness as well as on their family members, partners, and friends. If you or someone you care about has been diagnosed with bipolar disorder, you may have many questions about the nature of the illness, its causes, and the treatments that are available. This guide is intended to answer some of the most commonly asked questions about bipolar disorder.

What Is Bipolar Disorder?

As human beings, we all experience a variety of moods-happiness, sadness, anger, to name a few. Unpleasant moods and changes in mood are normal reactions in everyday life, and we can often identify the events that caused our mood to change. However, when we experience changes in mood-or extremes of mood-that are out of proportion to events or come "out of the blue" and make it hard for us to function, these changes are often the result of a mood disorder.

Mood disorders are biological illnesses that affect our ability to experience normal mood states. There are 2 general groups of mood disorders: unipolar depressive disorders, in which all abnormal mood changes involve a lowering of mood, and bipolar disorders, in which at least some of the mood changes involve abnormal elevation of mood. All mood disorders are caused by changes in brain chemistry. They are not the fault of the person suffering from them. They are not the result of a "weak" or unstable personality. Rather, mood disorders are treatable medical illnesses for which there are specific medications that help most people.

How is the diagnosis made?

Although bipolar disorder is clearly a biological disease, there are no laboratory tests or other procedures that a doctor can use to make a definitive diagnosis. Instead, the doctor diagnoses the illness based on a group of symptoms that occur together. To make an accurate diagnosis, the doctor will need to take a careful history of the symptoms the person is currently experiencing as well as any symptoms he or she has had in the past.

What are the symptoms of bipolar disorder?

Bipolar disorder is a disease in which the person's mood changes in cycles over time. Over the course of the illness, the person experiences periods of elevated mood, periods of depressed mood, and times when mood is normal. There are 4 different kinds of mood episodes that occur in bipolar disorder:

Mania(manic episode). Mania often begins with a pleasurable sense of heightened energy, creativity, and social ease. However, these feelings quickly progress to full-blown euphoria (extremely elevated mood) or severe irritability. People with mania typically lack insight, deny that anything is wrong, and angrily blame anyone who points out a problem. In a manic episode, the following symptoms are present for at least 1 week and make it very difficult for the person to function:.

• Feeling unusually "high," euphoric, or irritable

Plus at least 4 of the following symptoms:

• Needing little sleep yet having great amounts of energy
• Talking so fast that others cannot follow you
• Having racing thoughts
• Being so easily distracted that your attention shifts between many topics in just a few minutes
• Having an inflated feeling of power, greatness, or importance
• Doing reckless things without concern about possible bad consequences (e.g., spending too much money, inappropriate sexual activity, or making foolish business investments)

In severe cases, the person may also experience psychotic symptoms such as hallucinations (hearing or seeing things that are not there) or delusions (firmly believing things that are not true).

Hypomania (hypomanic episode). Hypomania is a milder form of mania that has similar but less severe symptoms and causes less impairment. During a hypomanic episode, the person may have an elevated mood, feel better than usual, and be more productive. These episodes often feel good and the quest for hypomania may even cause some individuals with bipolar disorder to stop their medication. However, hypomania can rarely be maintained indefinitely, and is often followed by an escalation to mania or a crash to depression.

Depression (major depressive episode). In a major depressive episode, the following symptoms are present for at least 2 weeks and make it difficult for the person to function:

• Feeling sad, blue, or down in the dumps or losing interest in the things one normally enjoys

Plus at least 4 of the following symptoms:

• Difficulty sleeping or sleeping too much
• Loss of appetite or eating too much
• Problems concentrating or making decisions
• Feeling slowed down or feeling too agitated to sit still
• Feeling worthless or guilty or having very low self-esteem
• Thoughts of suicide or death

Severe depressions may also include hallucinations or delusions.

Mixed Episode. Perhaps the most disabling episodes are those that involve symptoms of both mania and depression occurring at the same time or alternating frequently during the day. Individuals are excitable or agitated as in mania but also feel irritable and depressed. Owing to the combination of high energy and depression, mixed episodes present the greatest risk of suicide.

What are the different patterns of bipolar disorder?

People with bipolar disorder vary in the types of episodes they usually have and how often they become ill. Some individuals have equal numbers of manic and depressive episodes; others have mostly one type or the other. The average person with bipolar disorder has 4 episodes during the first 10 years of the illness. Men are more likely to start with a manic episode, women with a depressive episode. While a number of years can elapse between the first 2 or 3 episodes of mania or depression, without treatment most people eventually have more frequent episodes. Sometimes these follow a seasonal pattern (for example, becoming hypomanic in the summer and depressed in the winter). A small number of people cycle frequently or even continuously throughout the year (termed "rapid-cycling" bipolar disorder).

Episodes can last days, months, or sometimes even years. On average, without treatment, manic or hypomanic episodes last a few months, while depressions often last well over 6 months. Some individuals recover completely between episodes and may go many years without any symptoms, while others continue to have low-grade but troubling depression or mild swings up and down.

Special terms are used to describe these common patterns:

• In Bipolar I Disorder, a person has manic or mixed episodes and almost always has depressions as well. If someone becomes ill for the first time with a manic episode, the illness is still considered bipolar even though depressions have not yet occurred. It is highly likely that future episodes will involve depression as well as mania unless effective treatment is received.
• In Bipolar II Disorder, a person has only hypomanic and depressive episodes, not full manic or mixed episodes. This type is often hard to recognize because hypomania may seem normal if the person is very productive and avoids getting into serious trouble. Individuals with bipolar II disorder frequently overlook episodes of hypomania and seek treatment only for depression. Unfortunately, if a mood stabilizer is not prescribed with an antidepressant for unrecognized bipolar II disorder, the antidepressant may trigger a "high" or set off more frequent cycles.
• In Rapid-Cycling Bipolar Disorder, a person has at least 4 episodes per year, in any combination of manic, hypomanic, mixed, or depressive episodes. This course pattern is seen in approximately 5% to 15% of patients with bipolar disorder. It is sometimes associated with use of antidepressants without mood stabilizers, which may increase cycling. For unknown reasons, the rapid-cycling subtype of bipolar disorder is more common in women.

Are there other psychiatric conditions that may be confused with, or coexist with, bipolar disorder?

Bipolar disorder can be confused with other disorders, including a variety of anxiety disorders and psychotic disorders (such as schizophrenia and schizoaffective disorder). This is because anxiety and psychotic symptoms often occur during the course of bipolar disorder. Individuals with bipolar disorder also frequently suffer from psychiatric disorders that are "comorbid" with (are present in addition to) the bipolar illness. The most common of these comorbid conditions are substance abuse disorders, obsessive-compulsive disorder, and panic disorder. If you have any concerns about whether your diagnosis is correct, you should feel comfortable asking the doctor to explain how he or she arrived at a diagnosis of bipolar disorder.

When does bipolar disorder begin?

Bipolar disorder usually begins in adolescence or early adulthood, although it can sometimes start in early childhood or as late as the 40s or 50s. When someone over 50 has a manic episode for the first time, the cause is more likely to be a problem imitating bipolar disorder, such as a neurological illness or the effects of drugs, alcohol, or some prescription medications.

Why is it important to diagnose and treat bipolar disorder as early as possible?

On average, people with bipolar disorder see 3 to 4 doctors and spend over 8 years seeking treatment before they receive a correct diagnosis. Earlier diagnosis, proper treatment, and finding the right medications can help people avoid the following:

• Suicide. The risk is highest in the initial years of the illness. Over the course of the illness nearly 1 out of 5 individuals with bipolar disorder will die from suicide, making it one of the most lethal psychiatric illnesses.
• Alcohol/substance abuse. More than 50% of those with bipolar disorder abuse alcohol or drugs during their illness. While some individuals may use substances in an attempt to "self-medicate" symptoms of bipolar illness, individuals with a combination of substance abuse and bipolar illness have a worse outcome.
• Marital and work problems. Prompt treatment improves the prospects for a stable marriage and productive work.
• Treatment difficulties. In some individuals, it appears that episodes become more frequent and harder to treat over time. This is sometimes referred to as "kindling."
• Incorrect, inappropriate, or partial treatment. A person misdiagnosed as having depression alone instead of bipolar disorder may incorrectly receive antidepressants alone without a mood stabilizing medication. This can trigger manic episodes and make the overall course of the illness worse.

What causes bipolar disorder?

There is no single, proven cause of bipolar disorder, but research suggests that it is the result of abnormalities in the way some nerve cells in the brain function or communicate. Whatever the precise nature of the biochemical problem underlying bipolar illness, it clearly makes people with the disorder more vulnerable to emotional and physical stresses. As a result, upsetting life experiences, substance use, lack of sleep, or other stresses can trigger episodes of illness, even though these stresses do not actually cause the disorder.

This theory of an inborn vulnerability interacting with an environmental trigger is similar to theories proposed for many other medical conditions. In heart disease, for example, a person might inherit a tendency to have high cholesterol or high blood pressure, which can cause gradual damage to the heart's supply of oxygen. During stress, such as physical exertion or emotional tension, the person might suddenly develop chest pain or have a heart attack if the oxygen supply becomes too low. The treatment in this case is to take medication to lower the cholesterol or blood pressure (treating the underlying illness) and make changes in lifestyle (e.g., exercise, diet, reducing stresses that can trigger acute episodes). Similarly, in bipolar disorder, we use mood stabilizers to treat the underlying biological disorder while at the same time recommending changes in lifestyle (e.g., reducing stress, good sleep habits, avoiding substances of abuse) to lower the risk of relapse.

Is bipolar disorder inherited?

Bipolar disorder tends to run in families. Researchers have identified a number of genes that may be linked to the disorder, suggesting that several different biochemical problems may occur in bipolar disorder. Like other complex inherited disorders, bipolar disorder only occurs in a fraction of the individuals at genetic risk. For example, if an individual has bipolar disorder and his or her spouse does not, there is only a 1 in 7 chance that their child will develop it. The chance may be greater if you have a greater number of relatives with bipolar disorder or depression.

How Is Bipolar Disorder Treated?

Stages of Treatment

• Acute phase: treatment is aimed at ending the current manic, hypomanic, depressive, or mixed episode
• Preventive or maintenance phase: treatment is continued on a long-term basis to prevent future episodes

Components of Treatment

• Medication is necessary for nearly all patients during acute and preventive phases.
• Education is crucial in helping patients and families learn how best to manage bipolar disorder and prevent its complications.
• Psychotherapy helps patients and families affected by bipolar disorder deal with disturbing thoughts, feelings, and behaviors in a constructive manner.

Types Of Medication

The 3 most important types of medication used to control the symptoms of bipolar disorder are mood stabilizers, antidepressants, and antipsychotics. Your doctor may also prescribe other medications to help with insomnia, anxiety, or restlessness. While we do not understand how some of these medications work, we do know that all of them affect chemicals in the brain called neurotransmitters, which are involved in the functioning of nerve cells.

What are mood stabilizers?

Medications are considered mood stabilizers if they have 2 properties:

• they provide relief from acute episodes of mania or depression, or prevent them from occurring; and
• they do not worsen depression or mania or lead to increased cycling.

Lithium, divalproex and carbamazepine have been shown to meet this definition; the first 2 are the best established and most widely used. Divalproex and carbamazepine were originally developed as anticonvulsants for the control of epilepsy, another brain disorder. Other available medications that are undergoing research as promising mood stabilizers include several new anticonvulsants and the newer "atypical" antipsychotics. Electroconvulsive therapy (ECT), discussed later, is also considered a mood stabilizing treatment.

Lithium (brand names Eskalith, Lithobid, Lithonate)

The first known mood stabilizer, lithium, is actually an element rather than a compound (a substance synthesized by a laboratory). Lithium was first found to have behavioral effects in the 1950s and has been used as a mood stabilizer in the United States for 30 years. Lithium appears to be most effective for individuals with more "pure" or euphoric mania (where there is little depression mixed in with the elevated mood). It is also helpful for depression, especially when added to other medications. Lithium appears to be less effective in mixed manic episodes and in rapid-cycling bipolar disorder. Monitoring blood levels of lithium can reduce side effects and ensure that the patient is receiving an adequate dose to help produce the best response. Common side effects of lithium include weight gain, tremor, nausea, and increased urination. Lithium may affect the thyroid gland and the kidneys, so that periodic blood tests are needed to be sure they are functioning properly.

Divalproex (brand name Depakote)

Divalproex has been used as an anticonvulsant-to treat seizures-for several decades. It has also been extensively researched as a mood stabilizer in bipolar illness. Divalproex is equally effective in both euphoric and mixed manic episodes. It is also effective in rapid cycling bipolar disorder and for individuals whose illness is complicated by substance abuse or anxiety disorders. Unlike other mood stabilizers, divalproex can be given in relatively large initial doses for acute mania, which may produce a more rapid response. Common side effects of divalproex include sedation, weight gain, tremor, and gastrointestinal problems. Blood level monitoring and dose adjustments may help minimize side effects. Divalproex may cause a mild liver inflammation and may affect the production of a type of blood cell called platelets. Although it is quite rare for there to be any serious complications from these potential effects, it is important to monitor liver function tests and platelet counts periodically.

Other Anticonvulsants Used as Mood Stabilizers

• Carbamazepine (Tegretol, Carbatrol). Although fewer clinical studies support the use of carbamazepine, it appears to have a profile similar to divalproex. It, too, has been available for many years, and is effective in a broad range of subtypes of bipolar illness and in both euphoric and mixed manic episodes. Carbamazepine commonly causes sedation and gastrointestinal side effects. Because of a rare risk of bone marrow suppression and liver inflammation, periodic blood testing is also needed during carbamazepine treatment, just as during treatment with divalproex. Because carbamazepine has complicated interactions with many other medications, careful monitoring is needed when it is combined with other medications.
• Lamotrigine (Lamictal). Lamotrigine is a relatively new medication. Recent research suggests that it can act as a mood stabilizer, and may be especially useful for the depressed phase of bipolar disorder. One serious risk of lamotrigine use is that 3 out of every 1,000 individuals (0.3%) taking the medication develop a serious rash. The risk of rash can be lowered by increasing the dosage very slowly. Aside from the risk of rash, lamotrigine tends to have fewer troublesome side effects overall, but can cause dizziness, headaches, and difficulties with vision.
• Gabapentin (Neurontin). Gabapentin has become popular as a mood stabilizer, although there has been relatively little research on its use in bipolar disorder. It appears especially helpful in reducing anxiety. One strength of gabapentin is that it is unlikely to interact with other medications, so that it can be easily added to other mood stabilizers to augment their effect. Side effects of gabapentin can include fatigue, sedation, and dizziness.
• Topiramate (Topomax). Preliminary research suggests that this new anticonvulsant may be helpful in mania. One side effect of topiramate may actually be an advantage. Unlike many of the other mood stabilizers, topiramate does not appear to cause weight gain and may actually help people lose weight. Other side effects may include sedation, dizziness, and cognitive slowing or memory difficulties. It should avoided by people who have had kidney stones.

What are antidepressants?

Antidepressants treat the symptoms of depression. In bipolar disorder, antidepressants must be used together with a mood stabilizing medication. If used without a mood stabilizer, an antidepressant can push a person with bipolar disorder into a manic state. Many types of antidepressants are available with different chemical mechanisms of action and side effect profiles. Most research with antidepressants has been done in people with unipolar depression-people who have never had a manic episode. In unipolar depression, the available medications are about equally effective. There has been little research on the use of antidepressants in bipolar disorder, but most experts consider the following 3 types to be first choices:

• Bupropion (Wellbutrin)
• Selective serotonin reuptake inhibitors: fluoxetine (Prozac), fluvoxamine (Luvox), paroxetine (Paxil), sertraline (Zoloft)
• Venlafaxine (Effexor)

If these do not work, or if they cause unpleasant side effects, the other choices are:

• Mirtazapine (Remeron)
• Nefazodone (Serzone)
• Monoamine oxidase inhibitors: phenelzine (Nardil), tranylcypromine (Parnate). These are very effective but also require you to stay on a special diet to avoid dangerous side effects.
• Tricyclic antidepressants: amitriptyline (Elavil), desipramine (Norpramin, Pertofrane), imipramine (Tofranil), nortriptyline (Pamelor). Tricyclics may be more likely to cause side effects or to set off manic episodes or rapid cycling.

What are antipsychotic medications?

Antipsychotic medications are used to control psychotic symptoms, such as hallucinations or delusions, that sometimes occur in very severe depressive or manic episodes. Antipsychotics can be used in 2 additional ways in bipolar disorder, even if no psychotic symptoms are present. They may be used as sedatives, especially during early stages of treatment, for insomnia, anxiety, and agitation. Researchers also believe that the newer antipsychotic medications have mood stabilizing properties, and may help control depression and mania. Antipsychotic medications are therefore often added to mood stabilizers to improve the response in patients who have never had psychotic symptoms. Antipsychotics may also be used alone as mood stabilizers when patients cannot tolerate or do not respond to any of the mood stabilizers.

There are 2 kinds of antipsychotics: older antispychotics (often called "typical" or conventional antipsychotics) and newer antipsychotics (often called atypical antipsychotics). One serious problem with the older antipsychotics is the risk of a permanent movement disorder called tardive dyskinesia (TD). Older antipsychotic medicines may also cause muscle stiffness, restlessness, and tremors. The newer "atypical" antipsychotics have a much lower risk of causing TD (roughly 1% per year) and movement and muscle side effects. Because of this, the newer atypical antipsychotics are usually the first choice in any of the situations when an antipsychotic is needed.

Four atypical antipsychotics, are currently available:

• olanzapine (Zyprexa)
• quetiapine (Seroquel)
• risperidone (Risperdal)
• clozapine (Clozaril)

As mentioned earlier, research is beginning to show that these atypical antipsychotics have mood stabilizing properties. Common side effects of the atypical antipsychotics include drowsiness and weight gain. Although it is very effective, clozapine is not a first choice medication because it can cause a rare and serious blood side effect, requiring weekly or biweekly blood tests.

Examples of conventional antipsychotics include older medications such as haloperidol (Haldol), perphenazine (Trilafon), and chlorpromazine (Thorazine). Although they are not usually a first choice, the older medications can be helpful for patients who do not respond to or have troublesome side effects with the newer atypical antipsychotics.

Acute Phase Of Treatment

Selecting a Mood Stabilizer for an Acute Manic Episode

The first-line drugs for treating a manic episode during the acute phase are lithium and valproate. In choosing between these 2 medications, your doctor will consider your treatment history (whether either of these medicines has worked well for you in the past), the subtype of bipolar disorder you have (e.g., whether you have rapid-cycling bipolar disorder), your current mood state (euphoric or mixed mania), and the particular side effects that you are most concerned about.

Lithium and divalproex are each good choices for "pure" mania (euphoric mood without symptoms of depression), while divalproex is preferred for mixed episodes or for patients who have rapid-cycling bipolar disorder. It is not unusual to combine lithium and divalproex to obtain the best possible response. If this combination is still not fully effective, a third mood stabilizer is sometimes added.

Carbamazepine is a good alternative medication after lithium and divalproex. Like divalproex, carbamazepine may be particularly effective in mixed episodes and in the rapid-cycling subtype. It can be easily combined with lithium, although it is more complicated to combine it with divalproex.

The newer anticonvulsants (lamotrigine, gabapentin, and topiramate) are often best reserved as back-up medications to add to first-line medications for mania, or to use instead of the first-line group if there have been difficult side effects.

How quickly do mood stabilizers work?

It can take a few weeks for a good response to occur with mood stabilizers. However, it is often helpful to combine mood stabilizers with other medications that provide immediate, short-term relief from the insomnia, anxiety, and agitation that often occur during a manic episode. The choices for so-called "adjunctive" medication include:

• antipsychotic medicines, especially if the person is also having psychotic symptoms (see above).
• a sedative called a benzodiazepine. Benzodiazpeines include lorazepam (Ativan), clonazepam (Klonopin), and others. They should be carefully supervised, or avoided, in patients who have a history of drug addiction or alcoholism.

Although both benzodiazepine sedatives and antipsychotic medicines can cause drowsiness, the dosages of these medications can generally be lowered as the person recovers from the acute episode. However, some individuals need to continue taking a sedative for a longer period to control certain symptoms such as insomnia or anxiety. Longer-term treatment with an antipsychotic is sometimes needed to prevent relapse.

Selecting an Antidepressant for an Acute Depression

Although a mood stabilizer alone may treat milder depression, an antidepressant is usually needed for more severe depression. It is dangerous to give antidepressants alone in bipolar disorder, because they can trigger an increase in cycling or cause the person's mood to "overshoot" and switch from depression to hypomania or mania. For this reason, antidepressants are always given in combination with a mood stabilizer in bipolar disorder.

Antidepressants usually take several weeks to show effects. Although the first antidepressant tried will work for the majority of patients, it is common for patients to go through 2 or 3 trials of antidepressants before finding one that is fully effective and doesn't cause troublesome side effects. While waiting for the antidepressant to work, it may be helpful to take a sedating medication to help relieve insomnia, anxiety, or agitation.

If depression persists despite use of an antidepressant with a mood stabilizer, adding lithium (if not already in use) or changing the mood stabilizer might help. Lamotrigine, in particular, may be helpful in depression.

Strategies to Limit Side Effects

All of the medications that are used to treat bipolar disorder can produce bothersome side effects; there are also some serious but rare medical reactions. Just as different people have varying responses to different medications, the type of side effects different people develop can vary widely, and some people may not have any side effects at all. Also, if someone has problems with side effects on 1 medication, this does not mean that that person will develop troublesome side effects on another medication.

Certain strategies can help prevent or minimize side effects. For example, the doctor may want to start at a low dose and adjust the medication to higher doses very slowly. Although this may mean that you need to wait longer to see if the medication will help the symptoms, it does reduce the chances of side effects developing. In the case of lithium or divalproex, blood level monitoring is very important to insure that a patient is receiving enough medication to help, but not more than is necessary. If side effects do occur, the dosage can frequently be adjusted to eliminate the side effects or another medication can be added to help. It is important to discuss your concerns about side effects and any problems you may be experiencing with your doctor, so that he or she can take these into account in planning your treatment.

Electroconvulsive Therapy

Electroconvulsive therapy (ECT) is often life-saving in severe depression and mania, but has received a lot of undeserved negative publicity. ECT is a critically important option if someone is very suicidal, if the person is severely ill and cannot wait for medications to work (e.g., the person is not eating or drinking), if there is a history of many unsuccessful medication trials, if medical conditions or pregnancy make medications unsafe, or if psychosis (delusions or hallucinations) is present. ECT is administered under anesthesia in a carefully monitored medical setting. Patients typically receive 6 to 10 treatments over a few weeks. The most common side effect of ECT is temporary memory problems, but memory returns quickly after a course of treatment.

About Hospitalization

Many patients with bipolar I disorder (i.e., patients who have had at least 1 full manic episode) are hospitalized at some point in the course of their illness. Because acute mania affects insight and judgment, individuals with mania are often hospitalized over their objections, which can be upsetting for both patients and their loved ones. However, most individuals with mania are grateful for the help they received during the acute episode, even if it was given against their will at the time. Hospitalization should be considered under the following circumstances:

• When safety is in question due to suicidal, homicidal, or aggressive impulses or actions
• When severe distress or dysfunction requires round-the-clock care and support (which is difficult, if not impossible, for any family to sustain for a long period of time)
• Where there is ongoing substance abuse, to prevent access to drugs
• When the patient has an unstable medical condition
• When close observation of the patient's reaction to medications is required

Preventive Treatment

Mood stabilizers, especially lithium and divalproex, are the cornerstones of prevention or long-term maintenance treatment. About 1 in 3 people with bipolar disorder will remain completely free of symptoms just by taking mood stabilizing medication for life. Most other people experience a great reduction in the frequency and severity of episodes during maintenance treatment.

It is important not to become overly discouraged when episodes do occur and to recognize that the success of treatment can only be evaluated over the long term, by looking at the frequency and severity of episodes. Be sure to report changes in mood to your doctor immediately, because adjustments in your medicine at the first warning signs can often restore normal mood and head off a full-blown episode. Medication adjustments should be viewed as a routine part of treatment (just as insulin doses are changed from time to time in diabetes). Most patients with bipolar disorder do best on a combination or "cocktail" of medications. Often the best response is achieved with 1 or more mood stabilizers, supplemented from time to time with an antidepressant or possibly an antipsychotic medication.

Continuing to take medication correctly and as prescribed (which is called adherence) on a long-term basis is difficult whether you are being treated for a medical condition (such as high blood pressure or diabetes) or for bipolar disorder. Individuals with bipolar disorder are often tempted to stop taking their medication during maintenance treatment for several reasons. They may feel free of symptoms and think they don't need medication any more. They may find the side effects too hard to deal with. Or they may miss the mild euphoria they experience during hypomanic episodes. However, research clearly indicates that stopping maintenance medication almost always results in relapse, usually in weeks to months after stopping. In the case of lithium discontinuation, the rate of suicide rises precipitously after discontinuation. There is some evidence that stopping lithium in an abrupt fashion (rather than slowly tapering off) carries a much greater risk of relapse. Therefore, if you must discontinue medication, it should be done gradually under the close medical supervision of your doctor.

If someone has had only a single episode of mania, consideration may be given to tapering the medication after about a year. However, if the single episode occurs in someone with a strong family history of bipolar disorder or is particularly severe, longer-term maintenance treatment should be considered. If someone has had 2 or more manic or depressive episodes, experts strongly recommend taking preventive medication indefinitely. The only times to consider stopping a preventive medication that is working well is if a medical condition or severe side effect prevents its safe use, or when a woman is trying to become pregnant. Even these situations may not be absolute reasons to stop, and substitute medications can often be found. You should discuss each of these situations carefully with your doctor.

Education: Learning To Cope With Bipolar Disorder

Another important part of treatment is education. The more you and your family and loved ones learn about bipolar disorder and its treatment, the better you will be able to cope with it.

Is there anything I can do to help my treatment?

Absolutely, yes. First, you should become an expert on your illness. Since bipolar disorder is a lifetime condition, it is essential that you and your family or others close to you learn all about it and its treatment. Read books, attend lectures, talk to your doctor or therapist, and consider joining a chapter of the National Depressive and Manic-Depressive Association (NDMDA) or the National Alliance for the Mentally Ill (NAMI) near you to stay up to date on medical and other developments, as well as to learn from others about managing the illness. Being an informed patient is the surest path to success.

You can often help reduce the minor mood swings and stresses that sometimes lead to more severe episodes by paying attention to the following:

• Maintain a stable sleep pattern. Go to bed around the same time each night and get up about the same time each morning. Disrupted sleep patterns appear to cause chemical changes in your body that can trigger mood episodes. If you have to take a trip where you will change time zones and might have jet lag, get advice from your doctor.
• Maintain a regular pattern of activity. Don't be frenetic or drive yourself impossibly hard.
• Do not use alcohol or illicit drugs. Drugs and alcohol can trigger mood episodes and interfere with the effectiveness of psychiatric medications. You may sometimes find it tempting to use alcohol or illicit drugs to "treat" your own mood or sleep problems-but this almost always makes matters worse. If you have a problem with substances, ask your doctor for help and consider self-help groups such as Alcoholics Anonymous. Be very careful about "everyday" use of small amounts of alcohol, caffeine, and some over-the-counter medications for colds, allergies, or pain. Even small amounts of these substances can interfere with sleep, mood, or your medicine. It may not seem fair that you have to deprive yourself of a cocktail before dinner or a morning cup of coffee, but for many people this can be the "straw that breaks the camel's back."
• Enlist the support of family and friends. However, remember that it is not always easy to live with someone who has mood swings. If all of you learn as much as possible about bipolar disorder, you will be better able to help reduce the inevitable stress on relationships that the disorder can cause. Even the "calmest" family will sometimes need outside help dealing with the stress of a loved one who has continued symptoms. Ask your doctor or therapist to help educate both you and your family about bipolar disorder. Family therapy or joining a support group can also be very helpful.
• Try to reduce stress at work. Of course, you want to do your very best at work. However, keep in mind that avoiding relapses is more important and will, in the long run, increase your overall productivity. Try to keep predictable hours that allow you to get to sleep at a reasonable time. If mood symptoms interfere with your ability to work, discuss with your doctor whether to "tough it out" or take time off. How much to discuss openly with employers and coworkers is ultimately up to you. If you are unable to work, you might have a family member tell your employer that you are not feeling well and that you are under a doctor's care and will return to work as soon as possible.
• Learn to recognize the "early warning signs" of a new mood episode. Early signs of a mood episode differ from person to person and are different for mood elevations and depressions. The better you are at spotting your own early warning signs, the faster you can get help. Slight changes in mood, sleep, energy, self-esteem, sexual interest, concentration, willingness to take on new projects, thoughts of death (or sudden optimism), and even changes in dress and grooming may be early warnings of an impending high or low. Pay special attention to a change in your sleep pattern, because this is a common clue that trouble is brewing. Since loss of insight may be an early sign of an impending mood episode, don't hesitate to ask your family to watch for early warnings that you may be missing.
• Consider entering a clinical study.

What if you feel like quitting treatment?

It is normal to have occasional doubts and discomfort with treatment. If you feel a treatment is not working or is causing unpleasant side effects, tell your doctor-don't stop or adjust your medication on your own. Symptoms that come back after stopping medication are sometimes much harder to treat. Don't be shy about asking your doctor to arrange for a second opinion if things are not going well. Consultations can be a great help.

How often should I talk with my doctor?

During acute mania or depression, most people talk with their doctor at least once a week, or even every day, to monitor symptoms, medication doses, and side effects. As you recover, contact becomes less frequent; once you are well, you might see your doctor for a quick review every few months.

Regardless of scheduled appointments or blood tests, call your doctor if you have:

• Suicidal or violent feelings
• Changes in mood, sleep, or energy
• Changes in medication side effects
• A need to use over-the-counter medications such as cold medicine or pain medicine
• Acute general medical illnesses or a need for surgery, extensive dental care, or changes in other medicines you take

How can I monitor my own treatment progress?

Keeping a mood chart is a good way to help you, your doctor, and your family manage your disorder. A mood chart is a diary in which you keep track of your daily feelings, activities, sleep patterns, medication and side effects, and important life events. (You can ask your doctor or the NDMDA for a sample chart.) Often just a quick daily entry about your mood is all that is needed. Many people like using a simple, visual scale-from the "most depressed" to the "most manic" you ever felt, with "normal" being in the middle. Noticing changes in sleep, stresses in your life, and so forth may help you identify what are the early warning signs of mania or depression and what types of triggers typically lead to episodes for you. Keeping track of your medicines over many months or years will also help you figure out which ones work best for you.

What can families and friends do to help?

If you are a family member or friend of someone with bipolar disorder, become informed about the patient's illness, its causes, and its treatments. Talk to the patient's doctor if possible. Learn the particular warning signs for that person which indicate that he or she is becoming manic or depressed. Talk with the person, while he or she is well, about how you should respond when you see symptoms emerging.

• Encourage the patient to stick with treatment, to see the doctor, and to avoid alcohol and drugs. If the patient is not doing well or is having severe side effects, encourage the person to get a second opinion, but not to stop medication without advice.
• If your loved one becomes ill with a mood episode and suddenly views your concern as interference, remember that this is not a rejection of you but rather a symptom of the illness.
• Learn the warning signs of suicide and take any threats the person makes very seriously. If the person is "winding up" his or her affairs, talking about suicide, frequently discussing methods of suicide, or exhibiting increased feelings of despair, step in and seek help from the patient's doctor or other family members or friends. Privacy is a secondary concern when the person is at risk of committing suicide. Call 911 or a hospital emergency department if the situation becomes desperate.
• With someone prone to manic episodes, take advantage of periods of stable mood to arrange "advance directives"-plans and agreements you make with the person when he or she is stable to try to avoid problems during future episodes of illness. You should discuss when to institute safeguards, such as withholding credit cards, banking privileges, and car keys, and when to go to the hospital.
• Share the responsibility for taking care of the patient with other loved ones. This will help reduce the stressful effects that the illness has on caregivers and prevent you from "burning out" or feeling resentful.
• When patients are recovering from an episode, let them approach life at their own pace, and avoid the extremes of expecting too much or too little. Try to do things with them, rather than for them, so that they are able to regain their sense of self-confidence. Treat people normally once they have recovered, but be alert for telltale symptoms. If there is a recurrence of the illness, you may notice it before the person does. Indicate the early symptoms in a caring manner and suggest talking with the doctor.
• Both you and the patient need to learn to tell the difference between a good day and hypomania, and between a bad day and depression. Patients with bipolar disorder have good days and bad days just like everyone else. With experience and awareness, you will be able to tell the difference between the two.
• Take advantage of the help available from support groups.

Psychotherapy

Psychotherapy for bipolar disorder helps a person cope with life problems, come to terms with changes in self-image and life goals, and understand the effects of the illness on significant relationships. As a treatment to relieve symptoms during an acute episode, psychotherapy is much more likely to help with depression than with mania-during a manic episode, patients may find it hard to listen to a therapist. Long-term psychotherapy may help prevent both mania and depression by reducing the stresses that trigger episodes and by increasing patients' acceptance of the need for medication.

Types of Psychotherapy

Four specific types of psychotherapy have been studied by researchers. These approaches are particularly useful during acute depression and recovery:

• Behavioral therapy focuses on behaviors that can increase or decrease stress and ways to increase pleasurable experiences that may help improve depressive symptoms.
• Cognitive therapy focuses on identifying and changing the pessimistic thoughts and beliefs that can lead to depression.
• Interpersonal therapy focuses on reducing the strain that a mood disorder may place on relationships.
• Social rhythms therapy focuses on restoring and maintaining personal and social daily routines to stabilize body rhythms, especially the 24-hour sleep-wake cycle.

Psychotherapy can be individual (only you and a therapist), group (with other people with similar problems), or family. The person who provides therapy may be your doctor or another clinician, such as a social worker, psychologist, nurse, or counselor who works in partnership with your doctor.

How To Get the Most Out of Psychotherapy

• Keep your appointments.
• Be honest and open.
• Do the homework assigned to you as part of your therapy.
• Give the therapist feedback on how the treatment is working.

Remember that psychotherapy usually works more gradually than medication and may take 2 months or more to show its full effects. However, the benefits may be long lasting. Remember that people can react differently to psychotherapy, just as they do to medicine.

Information, Advocacy, And Research

Some of the major organizations that help people with bipolar disorder are listed below. The first 3 are advocacy groups- grassroots organizations founded by patients and families to improve care by providing educational material and support groups, helping with referrals, and working to eliminate stigma and to change laws and policies to benefit individuals with mental illness. The support groups they sponsor provide a forum for mutual acceptance and advice from others who have suffered from severe mood disorders-help that can be invaluable for some individuals. The last 3 organizations, headed by medical researchers, provide education and can help with referrals to programs and clinical studies that provide innovative and state-of-the-art treatment.

Depression and Bipolar Support Alliance (DBSA)
800-82-NDMDA (800-826-3632)
http://www.dbsalliance.org/

National Alliance for the Mentally Ill (NAMI)
800-950-NAMI (800-950-6264)
http://www.nami.org

National Mental Health Association (NMHA)
800-969-6642
http://www.nmha.org

National Foundation for Depressive Illness, Inc. (NFDI)
800-248-4344

Madison Institute of Medicine
Home of the Lithium Information Center and the Stanley Center for the
Innovative Treatment of Bipolar Disorder
Distributes very useful consumer guides to mood stabilizers 608-827-2470
http://www.miminc.org/

Systematic Treatment Enhancement Program for Bipolar Disorder (STEP-BD)
Project that is conducting studies involving 5,000 bipolar patients treated
in different centers in the United States. The goal is to improve
effectiveness of treatment for bipolar disorder.
If you are interested in participating, visit:
http://www.edc.gsph.pitt.edu/stepbd

For More Information

The NDMDA distributes free the booklet A Guide to Depressive and Manic-Depressive Illness: Diagnosis, Treatment and Support, along with a NDMDA bookstore catalog and chapter directory. The publications listed below also provide more information on bipolar disorder. Most are available from the NDMDA bookstore. To order these materials, call 800-82-NDMDA.

The recommendations in this article were based on a recent survey of experts on the medication treatment of bipolar disorder (published as A Postgraduate Medicine Special Report, April 2000). You can download an Adobe Acrobat file of this study and this guide for patients and families at our website: http://www.psychguides.com

Authors' Affiliations: Kahn and Printz: Columbia University; Ross: Ross Editorial; Sachs: Massachusetts General Hospital and Harvard Medical School.

Source: A Postgraduate Medicine Special Report
by David Kahn, MD, Ruth Ross, MA, David Printz, MD, Gary Sachs, MD
April 2000

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Reviewed by athealth on February 8, 2014.

Introduction

Research shows that half of all lifetime cases of mental illness begin by age 14.¹ Scientists are discovering that changes in the body leading to mental illness may start much earlier, before any symptoms appear.

Through greater understanding of when and how fast specific areas of children's brains develop, we are learning more about the early stages of a wide range of mental illnesses that appear later in life. Helping young children and their parents manage difficulties early in life may prevent the development of disorders. Once mental illness develops, it becomes a regular part of your child's behavior and more difficult to treat. Even though we know how to treat (though not yet cure) many disorders, many? children with mental illnesses are not getting treatment.

This fact sheet addresses common questions about diagnosis and treatment options for children with mental illnesses. Disorders affecting children may include anxiety disorders, attention deficit hyperactivity disorder (ADHD), autism spectrum disorders, bipolar disorder, depression, eating disorders, and schizophrenia.

Questions and Answers

Q: What should I do if I am concerned about mental, behavioral, or emotional symptoms in my child?

Talk to your child's doctor or health care provider. Ask questions and learn everything you can about the behavior or symptoms that worry you. If your child is in school ask the teacher if your child has been showing worrisome changes in behavior. Share this with your child's doctor or health care provider. Keep in mind that every child is different. Even normal development, such as when children develop language, motor, and social skills, varies from child to child. Ask if your child needs further evaluation by a specialist with experience in child behavioral problems. Specialists may include psychiatrists, psychologists, social workers, psychiatric nurses, and behavioral therapists. Educators may also help evaluate your child.

If you take your child to a specialist, ask, "Do you have experience treating the problems I see in my child?" Don't be afraid to interview more than one specialist to find the right fit. Continue to learn everything you can about the problem or diagnosis. The more you learn, the better you can work with your child's doctor and make decisions that feel right for you, your child, and your family.

Q: Can symptoms be caused by a death in the family, illness in a parent, family financial problems, divorce, or other events?

Yes. Every member of a family is affected by tragedy or extreme stress, even the youngest child. It's normal for stress to cause a child to be upset. Remember this if you see mental, emotional, or behavioral symptoms in your child. If it takes more than one month for your child to get used to a situation, or if your child has severe reactions, talk to your child's doctor.

Check your child's response to stress. Take note if he or she gets better with time or if professional care is needed. Stressful events are challenging, but they give you a chance to teach your child important ways to cope.

Q: How are mental illnesses diagnosed in young children?

Just like adults, children with mental illness are diagnosed after a doctor or mental health specialist carefully observes signs and symptoms. Some primary care physicians can diagnose your child themselves, but many will send you to a specialist who can diagnose and treat children.

Before diagnosing a mental illness, the doctor or specialist tries to rule out other possible causes for your child's behavior. The doctor will:

• Take a history of any important medical problems
• Take a history of the problem - how long you have seen the problem - as well as a history of your child's development
• Take a family history of mental disorders
• Ask if the child has experienced physical or psychological traumas, such as a natural disaster, or situations that may cause stress, such as a death in the family
• Consider reports from parents and other caretakers or teachers.

Very young children often cannot express their thoughts and feelings, so making a diagnosis can be challenging. The signs of a mental illness in a young child may be quite different from those in an older child or adult.

As parents and caregivers know, children are constantly changing and growing. Diagnosis and treatment must be viewed with these changes in mind. While some problems are short-lived and don't need treatment, others are ongoing and may be very serious. In either case, more information will help you understand treatment choices and manage the disorder or problem most effectively.

While diagnosing mental health problems in young children can be challenging, it is important. A diagnosis can be used to guide treatment and link your child's care to research on children with similar problems.

Q: Will my child get better with time?

Some children get better with time. But other children need ongoing professional help. Talk to your child's doctor or specialist about problems that are severe, continuous, and affect daily activities. Also, don't delay seeking help. Treatment may produce better results if started early.

Q: Are there treatment options for children?

Yes. Once a diagnosis is made, your child's specialist will recommend a specific treatment. It is important to understand the various treatment choices, which often include psychotherapy or medication. Talk about the options with a health care professional who has experience treating the illness observed in your child. Some treatment choices have been studied experimentally, and other treatments are a part of health care practice. In addition, not every community has every type of service or program.

Q: What are psychotropic medications?

Psychotropic medications are substances that affect brain chemicals related to mood and behavior. In recent years, research has been conducted to understand the benefits and risks of using psychotropics in children. Still, more needs to be learned about the effects of psychotropics, especially in children under six years of age. While researchers are trying to clarify how early treatment affects a growing body, families and doctors should weigh the benefits and risks of medication. Each child has individual needs, and each child needs to be monitored closely while taking medications.

Q: Are there treatments other than medications?

Yes. Psychosocial therapies can be very effective alone and in combination with medications. Psychosocial therapies are also called "talk therapies" or "behavioral therapy," and they help people with mental illness change behavior. Therapies that teach parents and children coping strategies can also be effective.²

Cognitive behavioral therapy (CBT) is a type of psychotherapy that can be used with children. It has been widely studied and is an effective treatment for a number of conditions, such as depression, obsessive-compulsive disorder, and social anxiety. A person in CBT learns to change distorted thinking patterns and unhealthy behavior. Children can receive CBT with or without their parents, as well as in a group setting. CBT can be adapted to fit the needs of each child. It is especially useful when treating anxiety disorders.³

Additionally, therapies for ADHD are numerous and include behavioral parent training and behavioral classroom management. Visit the NIMH Web site for more information about therapies for ADHD.

Some children benefit from a combination of different psychosocial approaches. An example is behavioral parent management training in combination with CBT for the child. In other cases, a combination of medication and psychosocial therapies may be most effective. Psychosocial therapies often take time, effort, and patience. However, sometimes children learn new skills that may have positive long-term benefits.

More information about treatment choices can be found in the psychotherapies and medications sections of the NIMH Web site.

Q: When is it a good idea to use psychotropic medications in young children?

When the benefits of treatment outweigh the risks, psychotropic medications may be prescribed. Some children need medication to manage severe and difficult problems. Without treatment, these children would suffer serious or dangerous consequences. In addition, psychosocial treatments may not always be effective by themselves. In some instances, however, they can be quite effective when combined with medication.

Ask your doctor questions about the risks of starting and continuing your child on these medications. Learn everything you can about the medications prescribed for your child. Learn about possible side effects, some of which may be harmful. Know what a particular treatment is supposed to do. For example, will it change a specific behavior? If you do not see these changes while your child is taking the medication, talk to his or her doctor. Also, discuss the risks of stopping your child's medication with your doctor.

Q: Does medication affect young children differently than older children or adults?

Yes. Young children handle medications differently than older children and adults. The brains of young children change and develop rapidly. Studies have found that developing brains can be very sensitive to medications. There are also developmental differences in how children metabolize - how their bodies process - medications. Therefore, doctors should carefully consider the dosage or how much medication to give each child. Much more research is needed to determine the effects and benefits of medications in children of all ages. But keep in mind that serious untreated mental disorders themselves can harm brain development.

Also, it is important to avoid drug interactions. If your child takes medicine for asthma or cold symptoms, talk to your doctor or pharmacist. Drug interactions could cause medications to not work as intended or lead to serious side effects.

Q: How should medication be included in an overall treatment plan?

Medication should be used with other treatments. It should not be the only treatment. Consider other services, such as family therapy, family support services, educational classes, and behavior management techniques. If your child's doctor prescribes medication, he or she should evaluate your child regularly to make sure the medication is working. Children need treatment plans tailored to their individual problems and needs.

Q: What medications are used for which kinds of childhood mental disorders?

Psychotropic medications include stimulants, antidepressants, anti-anxiety medications, antipsychotics, and mood stabilizers. Dosages approved by the U.S. Food and Drug Administration (FDA) for use in children depend on body weight and age. NIMH's medications booklet describes the types of psychotropic medications and includes a chart that lists the ages for which each medication is FDA-approved. See the FDA Web site for the latest information on medication approvals, warnings, and patient information guides.

Q: What does it mean if a medication is specifically approved for use in children?

When the FDA approves a medication, it means the drug manufacturer provided the agency with information showing the medication is safe and effective in a particular group of people. Based on this information, the drug's label lists proper dosage, potential side effects, and approved age. Medications approved for children follow these guidelines.

Many psychotropic medications have not been studied in children, which means they have not been approved by the FDA for use in children. But doctors may prescribe medications as they feel appropriate, even if those uses are not included on the label. This is called "off-label" use. Research shows that off-label use of some medications works well in some children. Other medications need more study in children. In particular, the use of most psychotropic medications has not been adequately studied in preschoolers.

More studies in children are needed before we can fully know the appropriate dosages, how a medication works in children, and what effects a medication might have on learning and development.

Q: Why haven't many medications been tested in children?

In the past, medications were seldom studied in children because mental illness was not recognized in childhood. Also, there were ethical concerns about involving children in research. This led to a lack of knowledge about the best treatments for children. In clinical settings today, children with mental or behavioral disorders are being prescribed medications at increasingly early ages. The FDA has been urging that medications be appropriately studied in children, and Congress passed legislation in 1997 offering incentives to drug manufacturers to carry out such testing. These activities have helped increase research on the effects of medications in children.

There still are ethical concerns about testing medications in children. However, strict rules protect participants in research studies. Each study must go through many types of review before, and after it begins.

Q: How do I work with my child's school?

If your child is having problems in school, or if a teacher raises concerns, you can work with the school to find a solution. You may ask the school to conduct an evaluation to determine whether your child qualifies for special education services. However, not all children diagnosed with a mental illness qualify for these services.

Start by speaking with your child's teacher, school counselor, school nurse, or the school's parent organization. These professionals can help you get an evaluation started. Also, each state has a Parent Training and Information Center and a Protection and Advocacy Agency that can help you request the evaluation. The evaluation must be conducted by a team of professionals who assess all areas related to the suspected disability using a variety of tools and measures.

Q: What resources are available from the school?

Once your child has been evaluated, there are several options for him or her, depending on the specific needs. If special education services are needed, and if your child is eligible under the Individuals with Disabilities Education Act (IDEA), the school district must develop an "individualized education program" specifically for your child within 30 days.

If your child is not eligible for special education services, he or she is still entitled to "free appropriate public education," available to all public school children with disabilities under Section 504 of the Rehabilitation Act of 1973. Your child is entitled to this regardless of the nature or severity of his or her disability.

The U.S. Department of Education's Office for Civil Rights enforces Section 504 in programs and activities that receive Federal education funds. Visit programs for children with disabilities for more information.

Q: What special challenges can school present?

Each school year brings a new teacher and new schoolwork. This change can be difficult for some children. Inform the teachers that your child has a mental illness when he or she starts school or moves to a new class. Additional support will help your child adjust to the change.

Q: What else can I do to help my child?

Children with mental illness need guidance and understanding from their parents and teachers. This support can help your child achieve his or her full potential and succeed in school. Before a child is diagnosed, frustration, blame, and anger may have built up within a family. Parents and children may need special help to undo these unhealthy interaction patterns. Mental health professionals can counsel the child and family to help everyone develop new skills, attitudes, and ways of relating to each other.

Parents can also help by taking part in parenting skills training. This helps parents learn how to handle difficult situations and behaviors. Training encourages parents to share a pleasant or relaxing activity with their child, to notice and point out what their child does well, and to praise their child's strengths and abilities. Parents may also learn to arrange family situations in more positive ways. Also, parents may benefit from learning stress-management techniques to help them deal with frustration and respond calmly to their child's behavior.

Sometimes, the whole family may need counseling. Therapists can help family members find better ways to handle disruptive behaviors and encourage behavior changes. Finally, support groups help parents and families connect with others who have similar problems and concerns. Groups often meet regularly to share frustrations and successes, to exchange information about recommended specialists and strategies, and to talk with experts.

Q: How can families of children with mental illness get support?

Like other serious illnesses, taking care of a child with mental illness is hard on the parents, family, and other caregivers. Caregivers often must tend to the medical needs of their loved ones, and also deal with how it affects their own health. The stress that caregivers are under may lead to missed work or lost free time. It can strain relationships with people who may not understand the situation and lead to physical and mental exhaustion.

Stress from caregiving can make it hard to cope with your child's symptoms. One study shows that if a caregiver is under enormous stress, his or her loved one has more difficulty sticking to the treatment plan.⁴ It is important to look after your own physical and mental health. You may also find it helpful to join a local support group.

Q: Where can I go for help?

If you are unsure where to go for help, ask your family doctor. Others who can help are listed below.

• Mental health specialists, such as psychiatrists, psychologists, social workers, or mental health counselors
• Health maintenance organizations
• Community mental health centers
• Hospital psychiatry departments and outpatient clinics
• Mental health programs at universities or medical schools
• State hospital outpatient clinics
• Family services, social agencies, or clergy
• Peer support groups
• Private clinics and facilities
• Employee assistance programs
• Local medical and/or psychiatric societies

You can also check the phone book under "mental health," "health," "social services," "hotlines," or "physicians" for phone numbers and addresses. An emergency room doctor can also provide temporary help and can tell you where and how to get further help.

More information on mental health is at the NIMH Web site. For the latest information on medications, see the U.S. Food and Drug Administration website.

Citations

1. Kessler RC, Chiu WT, Demler O, Merikangas KR, Walters EE. Prevalence, severity, and comorbidity of 12-month DSM-IV disorders in the National Comorbidity Survey Replication. Arch Gen Psychiatry. 2005 Jun;62(6):617-27.
2. Silverman WK, Hinshaw SP. The Second Special Issue on Evidence-Based Psychosocial Treatments for Children and Adolescents: A Ten-Year Update. J Clin Child Adolesc Psychol. 2008 Jan-Mar;37(1).
3. Silverman WK, Hinshaw SP. The Second Special Issue on Evidence-Based Psychosocial Treatments for Children and Adolescents: A Ten-Year Update. J Clin Child Adolesc Psychol. 2008 Jan-Mar;37(1).
4. Perlick DA, Rosenheck RA, Clarkin JF, Maciejewski PK, Sirey J, Struening E, Link BG. Impact of family burden and affective response on clinical outcome among patients with bipolar disorder. Psychiatr Serv. 2004 Sep;55(9):1029-35.

Source: National Institute of Mental Health (NIMH)
NIH No. 09-4702
Revised 2009

Reviewed by athealth on February 8, 2014.

What Is Osteoarthritis?

Osteoarthritis (AH-stee-oh-ar-THREYE-tis) is the most common type of arthritis and is seen especially among older people. Sometimes it is called degenerative joint disease or osteoarthrosis.

Osteoarthritis mostly affects cartilage (KAR-til-uj), the hard but slippery tissue that covers the ends of bones where they meet to form a joint. Healthy cartilage allows bones to glide over one another. It also absorbs energy from the shock of physical movement. In osteoarthritis, the surface layer of cartilage breaks and wears away. This allows bones under the cartilage to rub together, causing pain, swelling, and loss of motion of the joint. Over time, the joint may lose its normal shape. Also, small deposits of bone - called osteophytes or bone spurs - may grow on the edges of the joint. Bits of bone or cartilage can break off and float inside the joint space. This causes more pain and damage.

People with osteoarthritis usually have joint pain and stiffness. Unlike some other forms of arthritis, such as rheumatoid arthritis, osteoarthritis affects only joint function. It does not affect skin tissue, the lungs, the eyes, or the blood vessels.
h
In rheumatoid arthritis, the second most common form of arthritis, the immune system attacks the tissues of the joints, leading to pain, inflammation, and eventually joint damage and malformation. It typically begins at a younger age than osteoarthritis, causes swelling and redness in joints, and may make people feel sick, tired, and feverish. Also, the joint involvement of rheumatoid arthritis is symmetrical; that is, if one joint is affected, the same joint on the opposite side of the body is usually similarly affected. Osteoarthritis, on the other hand, can occur in a single joint or can affect a joint on one side of the body much more severely.

Who Has Osteoarthritis?

Osteoarthritis is by far the most common type of arthritis, and the percentage of people who have it grows higher with age. An estimated 27 million Americans age 25 and older have osteoarthritis.¹

Although osteoarthritis becomes more common with age, younger people can develop it, usually as the result of a joint injury, a joint malformation, or a genetic defect in joint cartilage. Both men and women have the disease. Before age 45, more men than women have osteoarthritis; after age 45, it is more common in women. It is also more likely to occur in people who are overweight and in those with jobs that stress particular joints.

As the population ages, the number of people with osteoarthritis will only grow. By 2030, a projected 67 million people will have doctor-diagnosed arthritis.²

1. Lawrence RC, Felson DT, Helmick CG, Arnold LM, Choi H, Deyo RA, Gabriel S, Hirsch R, Hochberg MC, Hunder GG, Jordan JM, Katz JN, Kremers HM, Wolfe F. Estimates of the prevalence of arthritis and other rheumatic conditions in the United States: Part II. Arthritis Rheum. 2008 Jan;58(1):26-35.
2. Hootman JM, Helmick CG. Projections of US prevalence of arthritis and associated activity limitations. Arthritis Rheum. 2006 Jan;54(1):226-29.

How Does Osteoarthritis Affect People?

People with osteoarthritis usually experience joint pain and stiffness. The most commonly affected joints are those at the ends of the fingers (closest to the nail), thumbs, neck, lower back, knees, and hips. Osteoarthritis affects different people differently. It may progress quickly, but for most people, joint damage develops gradually over years. In some people, osteoarthritis is relatively mild and interferes little with day-to-day life; in others, it causes significant pain and disability.

Although osteoarthritis is a disease of the joints, its effects are not just physical. In many people with osteoarthritis, lifestyle and finances also decline.

Lifestyle effects include

• depression
• anxiety
• feelings of helplessness
• limitations on daily activities
• job limitations
• difficulty participating in everyday personal and family joys and responsibilities.

Financial effects include

• the cost of treatment
• wages lost because of disability.

Fortunately, most people with osteoarthritis live active, productive lives despite these limitations. They do so by using treatment strategies such as rest and exercise, pain relief medications, education and support programs, learning self-care, and having a "good attitude."

What Areas Does Osteoarthritis Affect?

Osteoarthritis most often occurs at the ends of the fingers, thumbs, neck, lower back, knees, and hips.

Osteoarthritis Basics: The Joint and Its Parts

A joint is the point where two or more bones are connected. With a few exceptions (in the skull and pelvis, for example), joints are designed to allow movement between the bones and to absorb shock from movements like walking or repetitive motions. These movable joints are made up of the following parts:

• Cartilage. A hard but slippery coating on the end of each bone. Cartilage, which breaks down and wears away in osteoarthritis. Cartilage is the key to healthy joints. Cartilage is 65 to 80 percent water. The remaining three components - collagen, proteoglycans, and chondrocytes - are described below.
  

  Collagen (KAHL-uh-jen). A family of fibrous proteins, collagens are the building blocks of skin, tendon, bone, and other connective tissues.

Proteoglycans (PRO-tee-uh-GLY-kanz). Made up of proteins and sugars, strands of proteoglycans interweave with collagens and form a mesh-like tissue. This allows cartilage to flex and absorb physical shock.

Chondrocytes (KAHN-druh-sytz). Found throughout the cartilage, chondrocytes are cells that produce cartilage and help it stay healthy as it grows. Sometimes, however, they release substances called enzymes that destroy collagen and other proteins. Researchers are trying to learn more about chondrocytes.

• Joint capsule. A tough membrane sac that encloses all the bones and other joint parts.
• Synovium (sin-O-vee-um). A thin membrane inside the joint capsule that secretes synovial fluid.
• Synovial fluid. A fluid that lubricates the joint and keeps the cartilage smooth and healthy.
• Ligaments, tendons, and muscles. Tissues that surround the bones and joints, and allow the joints to bend and move. Ligaments are tough, cord-like tissues that connect one bone to another.
• Tendons. Tough, fibrous cords that connect muscles to bones. Muscles are bundles of specialized cells that, when stimulated by nerves, either relax or contract to produce movement.

How Do You Know if You Have Osteoarthritis?

Usually, osteoarthritis comes on slowly. Early in the disease, your joints may ache after physical work or exercise. Later on, joint pain may become more persistent. You may also experience joint stiffness, particularly when you first wake up in the morning or have been in one position for a long time.

Although osteoarthritis can occur in any joint, most often it affects the hands, knees, hips, and spine (either at the neck or lower back). Different characteristics of the disease can depend on the specific joint(s) affected. For general warning signs of osteoarthritis, see the box "The Warning Signs of Osteoarthritis." For information on the joints most often affected by osteoarthritis, see the following descriptions:

Hands. Osteoarthritis of the hands seems to have some hereditary characteristics; that is, it runs in families. If your mother or grandmother has or had osteoarthritis in their hands, you're at greater-than-average risk of having it too. Women are more likely than men to have hand involvement and, for most, it develops after menopause.

When osteoarthritis involves the hands, small, bony knobs may appear on the end joints (those closest to the nails) of the fingers. They are called Heberden's (HEBerr-denz) nodes. Similar knobs, called Bouchard's (boo-SHARDZ) nodes, can appear on the middle joints of the fingers. Fingers can become enlarged and gnarled, and they may ache or be stiff and numb. The base of the thumb joint also is commonly affected by osteoarthritis.

Knees. The knees are among the joints most commonly affected by osteoarthritis. Symptoms of knee osteoarthritis include stiffness, swelling, and pain, which make it hard to walk, climb, and get in and out of chairs and bathtubs. Osteoarthritis in the knees can lead to disability.

Hips. The hips are also common sites of osteoarthritis. As with knee osteoarthritis, symptoms of hip osteoarthritis include pain and stiffness of the joint itself. But sometimes pain is felt in the groin, inner thigh, buttocks, or even the knees. Osteoarthritis of the hip may limit moving and bending, making daily activities such as dressing and putting on shoes a challenge.

Spine. Osteoarthritis of the spine may show up as stiffness and pain in the neck or lower back. In some cases, arthritis-related changes in the spine can cause pressure on the nerves where they exit the spinal column, resulting in weakness, tingling, or numbness of the arms and legs. In severe cases, this can even affect bladder and bowel function.

The Warning Signs of Osteoarthritis Stiffness in a joint after getting out of bed or sitting for a long time Swelling or tenderness in one or more joints. Crunching feeling or the sound of bone rubbing on bone. About a third of people whose x rays show evidence of osteoarthritis report pain or other symptoms. For those who experience steady or intermittent pain, it is typically aggravated by activity and relieved by rest. If you feel hot or your skin turns red, or if your joint pain is accompanied by other symptoms such as a rash or fevers, you probably do not have osteoarthritis. Check with your doctor about other causes, such as rheumatoid arthritis.

How Do Doctors Diagnose Osteoarthritis?

No single test can diagnose osteoarthritis; however, sometimes doctors use tests to help confirm a diagnosis or rule out other conditions that could be causing a patient's symptoms. Most doctors use a combination of the following methods:

Clinical history: The doctor begins by asking the patient to describe the symptoms, and when and how the condition started, as well as how the symptoms have changed over time. The doctor will also ask about any other medical problems the patient and close family members have and about any medications the patient is taking. Accurate answers to these questions can help the doctor make a diagnosis and understand the impact the disease has on your life.

Physical examination: The doctor will check the patient's reflexes and general health, including muscle strength. The doctor will also examine bothersome joints and observe the patient's ability to walk, bend, and carry out activities of daily living.

X rays: X rays can help doctors determine the form of arthritis a person has and how much joint damage has been done. X rays of the affected joint can show such things as cartilage loss, bone damage, and bone spurs. But there often is a big difference between the severity of osteoarthritis as shown by the x ray and the degree of pain and disability felt by the patient. Also, x rays may not show early osteoarthritis damage until much cartilage loss has taken place.

Magnetic resonance imaging: Also known as MRI, magnetic resonance imaging provides high-resolution computerized images of internal body tissues. This procedure uses a strong magnet that passes a force through the body to create these images. Doctors often use MRI tests if there is pain; if x-ray findings are minimal; and if the findings suggest damage to other joint tissues such as a ligament or the pad of connective tissue in the knee known as the meniscus.

Other tests: The doctor may order blood tests to rule out other causes of symptoms. He or she may also order a joint aspiration, which involves drawing fluid from the joint through a needle and examining the fluid under a microscope. Joint fluid samples could reveal bacteria, indicating joint pain is caused by an infection or uric acid crystals, indicating gout.

Osteoarthritis is so common, especially in older people, that symptoms seemingly caused by the disease actually may be caused by other medical conditions. The doctor will try to find out what is causing the symptoms by ruling out other disorders and identifying conditions that may make the symptoms worse. The severity of symptoms in osteoarthritis can be influenced greatly by the patient's attitude, anxiety, depression, and daily activity level.

How Is Osteoarthritis Treated?

Most successful treatment programs involve a combination of treatments tailored to the patient's needs, lifestyle, and health. Osteoarthritis treatment has four general goals:

• Improve joint function
• Maintain an acceptable body weight
• Control pain with medicine and other measures
• Achieve a healthy lifestyle

Treatment Approaches to Osteoarthritis Exercise Weight control Rest and relief from stress on joints Nondrug pain relief techniques and alternative therapies Medications to control pain Surgery

Most successful treatment programs involve a combination of treatments tailored to the patient's needs, lifestyle, and health. Most programs include ways to manage pain and improve function. These can involve exercise, weight control, rest and relief from stress on joints, pain relief techniques, medications, surgery, and complementary and alternative therapies. These approaches are described below.

Exercise

Research shows that exercise is one of the best treatments for osteoarthritis. Exercise can improve mood and outlook, decrease pain, increase flexibility, strengthen the heart and improve blood flow, maintain weight, and promote general physical fitness. Exercise is also inexpensive and, if done correctly, has few negative side effects. The amount and form of exercise prescribed will depend on which joints are involved, how stable the joints are, and whether a joint replacement has already been done. Walking, swimming, and water aerobics are a few popular types of exercise for people with osteoarthritis. Your doctor and/or physical therapist can recommend specific types of exercise depending on your particular situation. (See section "What You Can Do: The Importance of Self-Care and a Good Health Attitude").

On the Move: Fighting Osteoarthritis With ExerciseYou can use exercises to keep strong and limber, improve cardiovascular fitness, extend your joints' range of motion, and reduce your weight. The following types of exercise are part of a well-rounded arthritis treatment plan. Strength exercises: These exercises strengthen muscles that support joints affected by arthritis. They can be performed with weights or with exercise bands, inexpensive devices that add resistance. Aerobic activities: These are exercises, such as brisk walking or low-impact aerobics, that get your heart pumping and can keep your lungs and circulatory system in shape. Range of motion activities: These keep your joints limber. Balance and agility exercises: These can help you maintain daily living skills. Ask your doctor or physical therapist what exercises are best for you. Ask for guidelines on exercising when a joint is sore or if swelling is present. Also, check if you should (1) use pain-relieving drugs, such as analgesics or anti-inflammatories (also called NSAIDs or nonsteroidal anti-inflammatory drugs) to make exercising easier, or (2) use ice afterward.

Weight control: Osteoarthritis patients who are overweight or obese should try to lose weight. Weight loss can reduce stress on weight-bearing joints, limit further injury, and increase mobility. A dietitian can help you develop healthy eating habits. A healthy diet and regular exercise help reduce weight.

Rest and relief from stress on joints: Treatment plans include regularly scheduled rest. Patients must learn to recognize the body's signals, and know when to stop or slow down. This will prevent the pain caused by overexertion. Although pain can make it difficult to sleep, getting proper sleep is important for managing arthritis pain. If you have trouble sleeping, you may find that relaxation techniques, stress reduction, and biofeedback can help, as can timing medications to provide maximum pain relief through the night. If joint pain interferes with your ability to sleep or rest, consult your doctor.

Some people find relief from special footwear and insoles that can reduce pain and improve walking or from using canes to take pressure off painful joints. They may use splints or braces to provide extra support for joints and/or keep them in proper position during sleep or activity. Splints should be used only for limited periods of time because joints and muscles need to be exercised to prevent stiffness and weakness. If you need a splint, an occupational therapist or a doctor can help you get a properly fitted one.

Nondrug pain relief and alternative therapies: People with osteoarthritis may find many nondrug ways to relieve pain. Below are some examples:

Heat and cold. Heat or cold (or a combination of the two) can be useful for joint pain. Heat can be applied in a number of different ways - with warm towels, hot packs, or a warm bath or shower - to increase blood flow and ease pain and stiffness. In some cases, cold packs (bags of ice or frozen vegetables wrapped in a towel), which reduce inflammation, can relieve pain or numb the sore area. (Check with a doctor or physical therapist to find out if heat or cold is the best treatment.)

Transcutaneous electrical nerve stimulation (TENS). TENS is a technique that uses a small electronic device to direct mild electric pulses to nerve endings that lie beneath the skin in the painful area. TENS may relieve some arthritis pain. It seems to work by blocking pain messages to the brain and by modifying pain perception.

Massage. In this pain-relief approach, a massage therapist will lightly stroke and/or knead the painful muscles. This may increase blood flow and bring warmth to a stressed area. However, arthritis-stressed joints are sensitive, so the therapist must be familiar with the problems of the disease.

Complementary and alternative therapies. When conventional medical treatment doesn't provide sufficient pain relief, people are more likely to try complementary and alternative therapies to treat osteoarthritis. Some people have found pain relief using acupuncture, a practice in which fine needles are inserted by a licensed acupuncture therapist at specific points on the skin. Scientists think the needles stimulate the release of natural, pain-relieving chemicals produced by the nervous system. A large study supported by the National Institute of Arthritis and Musculoskeletal and Skin Diseases (NIAMS) and the National Center for Complementary and Alternative Medicine (NCCAM) revealed that acupuncture relieves pain and improves function in knee osteoarthritis, and it serves as an effective complement to standard care.[3]

Folk remedies include the wearing of copper bracelets, following special diets, and rubbing WD-40 on joints to "lubricate" them. Although these practices may or may not be harmful, no scientific research to date shows that they are helpful in treating osteoarthritis. They can also be expensive, and using them may cause people to delay or even abandon useful medical treatment.

Nutritional supplements such as glucosamine and chondroitin sulfate have been reported to improve the symptoms of people with osteoarthritis, as have certain vitamins. Additional studies have been carried out to further evaluate these claims (see "Research Highlights"). It is unknown whether they might change the course of disease.

3 Berman BM, Lao L, Langenberg P, Lee WL, Gilpin AM, Hochberg MC. Effectiveness of acupuncture as adjunctive therapy in osteoarthritis of the knee: a randomized, controlled trial. Ann Intern Med. 2004 Dec 21;141(12):901-10.

Medications to control pain: Doctors prescribe medicines to eliminate or reduce pain and to improve functioning. Doctors consider a number of factors when choosing medicines for their patients with osteoarthritis. These include the intensity of pain, potential side effects of the medication, your medical history (other health problems you have or are at risk for), and other medications you are taking.

Because some medications can interact with one another and certain health conditions put you at increased risk of drug side effects, it's important to discuss your medication and health history with your doctor before you start taking any new medication, and to see your doctor regularly while you are taking medication. By working together, you and your doctor can find the medication that best relieves your pain with the least risk of side effects.

The following types of medicines are commonly used in treating osteoarthritis:

Acetaminophen: A medication commonly used to relieve pain, acetaminophen, is available without a prescription. It is often the first medication doctors recommend for osteoarthritis patients because of its safety relative to some other drugs and its effectiveness against pain.

NSAIDs (nonsteroidal anti-inflammatory drugs): A large class of medications useful against both pain and inflammation, (NSAIDs)4 are staples in arthritis treatment. Aspirin, ibuprofen, naproxen, and naproxen sodium are examples of NSAIDs. They are often the first type of medication used. All NSAIDs work similarly: by blocking substances called prostaglandins that contribute to inflammation and pain. However, each NSAID is a different chemical, and each has a slightly different effect on the body.

Some NSAIDs are available over the counter, while more than a dozen others, including a subclass called COX-2 inhibitors, are available only with a prescription.

All NSAIDs can have significant side effects, and for unknown reasons, some people seem to respond better to one NSAID than another. Any person taking NSAIDs regularly should be monitored by a doctor.

Reducing the Risks of NSAID Use

Certain health problems and lifestyle habits can increase the risk of side effects from NSAIDs. These include a history of peptic ulcers or digestive tract bleeding, use of oral corticosteroids or anticoagulants (blood thinners), smoking, and alcohol use.

There are measures you can take to help reduce the risk of side effects associated with NSAIDs. These include taking medications with food and avoiding stomach irritants such as alcohol, tobacco, and caffeine. In some cases, it may help to take another medication along with an NSAID to coat the stomach or block stomach acids. Although these measures may help, they are not always completely effective.

Warning: NSAIDs can cause stomach irritation or, less often, they can affect kidney function. The longer a person uses NSAIDs, the more likely he or she is to have side effects, ranging from mild to serious. Many other drugs cannot be taken when a patient is being treated with NSAIDs, because NSAIDs alter the way the body uses or eliminates these other drugs. Check with your health care provider or pharmacist before you take NSAIDs. Also, NSAIDs sometimes are associated with serious gastrointestinal problems, including ulcers, bleeding, and perforation of the stomach or intestine. People over age 65 and those with any history of ulcers or gastrointestinal bleeding should use NSAIDs with caution.

Narcotic or central acting agents. Tramadol is a prescription pain reliever and synthetic opioid that is sometimes prescribed when over-the-counter medications don't provide sufficient relief. It works through the central nervous system to achieve its effects. Tramadol carries risks that don't exist with acetaminophen and NSAIDs, including the potential for addiction.

Mild narcotic painkillers containing analgesics such as codeine or hydrocodone are often effective against osteoarthritis pain. But because of concerns about the potential for physical and psychological dependence on these drugs, doctors generally reserve them for short-term use.

Injections. Corticosteroids are powerful anti-inflammatory hormones made naturally in the body or man made for use as medicine. They may be injected into the affected joints to temporarily relieve pain. This is a short-term measure, generally not recommended for more than two to four treatments per year. Oral corticosteroids are not routinely used to treat osteoarthritis. They are occasionally used for inflammatory flares.

Hyaluronic acid substitutes. Sometimes called viscosupplements, hyaluronic acid substitutes are designed to replace a normal component of the joint involved in joint lubrication and nutrition. Depending on the particular product your doctor prescribes, it will be given in a series of three to five injections. These products are approved only for osteoarthritis of the knee.

Other medications. Doctors may prescribe several other medicines for osteoarthritis. They include topical pain-relieving creams, rubs, and sprays, which are applied directly to the skin over painful joints. They contain ingredients that work in one of three different ways: (1) by stimulating the nerve endings to distract the brain's attention from the joint pain, (2) by depleting the amount of a neurotransmitter called substance P that sends pain messages to the brain, or (3) by blocking chemicals called prostaglandins that cause pain and inflammation.

Because most medicines used to treat osteoarthritis have side effects, it's important to learn as much as possible about the medications you take, even the ones available without a prescription. Certain health problems and lifestyle habits can increase the risk of side effects from NSAIDs. These include a history of peptic ulcers or digestive tract bleeding, use of oral corticosteroids or anticoagulants (blood thinners), smoking, and alcohol use.

There are measures you can take to help reduce the risk of side effects associated with NSAIDs. These include taking medications with food and avoiding stomach irritants such as alcohol, tobacco, and caffeine. In some cases, it may help to take another medication along with an NSAID to coat the stomach or block stomach acids. Although these measures may help, they are not always completely effective.

Questions To Ask Your Doctor or Pharmacist About Medicines

• How often should I take this medicine?
• Should I take this medicine with food or between meals?
• What side effects might occur?
• Should I take this medicine with the other prescription or over-the-counter medicines I take?
• Is this medication safe considering other medical conditions I have?

Surgery: For many people, surgery helps relieve the pain and disability of osteoarthritis. Surgery may be performed to achieve one or more of the following:

• removal of loose pieces of bone and cartilage from the joint if they are causing symptoms of buckling or locking (arthroscopy)
• repositioning of bones (osteotomy)
• resurfacing (smoothing out) bones (joint resurfacing).

Surgeons may replace affected joints with artificial joints called prostheses. These joints can be made from metal alloys, high-density plastic, and ceramic material. Some prostheses are joined to bone surfaces with special cements. Others have porous surfaces and rely on the growth of bone into that surface (a process called biologic fixation) to hold them in place. Artificial joints can last 10 to 15 years or longer. Surgeons choose the design and components of prostheses according to their patient's weight, sex, age, activity level, and other medical conditions.

Joint replacement advances in recent years have included the ability, in some cases, to replace only the damaged part of the knee joint, leaving undamaged parts of the joint intact, and the ability to perform hip replacement through much smaller incisions than previously possible.

The decision to use surgery depends on several factors, including the patient's age, occupation, level of disability, pain intensity, and the degree to which arthritis interferes with his or her lifestyle. After surgery and rehabilitation, the patient usually feels less pain and swelling and can move more easily.

Who Provides Care for People With Osteoarthritis?

Treating arthritis often requires a multidisciplinary or team approach. Many types of health professionals care for people with arthritis. You may choose a few or more of the following professionals to be part of your health care team:

Primary care physicians. Doctors who treat patients before they are referred to other specialists in the health care system. Often a primary care physician will be the main doctor to treat your arthritis. Primary care physicians also handle other medical problems and coordinate the care you receive from other physicians and health care providers.

Rheumatologists. Doctors who specialize in treating arthritis and related conditions that affect joints, muscles, and bones.

Orthopaedists. Surgeons who specialize in the treatment of, and surgery for, bone and joint diseases.

Physical therapists. Health professionals who work with patients to improve joint function.

Occupational therapists. Health professionals who teach ways to protect joints, minimize pain, perform activities of daily living, and conserve energy.

Dietitians. Health professionals who teach ways to use a good diet to improve health and maintain a healthy weight.

Nurse educators. Nurses who specialize in helping patients understand their overall condition and implement their treatment plans.

Physiatrists (rehabilitation specialists). Medical doctors who help patients make the most of their physical potential.

Licensed acupuncture therapists. Health professionals who reduce pain and improve physical functioning by inserting fine needles into the skin at specific points on the body.

Psychologists. Health professionals who seek to help patients cope with difficulties in the home and workplace resulting from their medical conditions.

Social workers. Professionals who assist patients with social challenges caused by disability, unemployment, financial hardships, home health care, and other needs resulting from their medical conditions.

Chiropractors. Health professionals who focus treatment on the relationship between the body's structure—mainly the spine—and its functioning.

Massage therapists. Health professionals who press, rub, and otherwise manipulate the muscles and other soft tissues of the body. They most often use their hands and fingers, but may use their forearms, elbows, or feet.

What You Can Do: The Importance of Self-Care and a Good Health Attitude

Although health care professionals can prescribe or recommend treatments to help you manage your arthritis, the real key to living well with the disease is you. Research shows that people with osteoarthritis who take part in their own care report less pain and make fewer doctor visits. They also enjoy a better quality of life.

Living well and enjoying good health despite arthritis requires an everyday lifelong commitment. The following six habits are worth committing to:

1. Get educated. To live well with osteoarthritis, it pays to learn as much as you can about the disease. Three kinds of programs help people understand osteoarthritis, learn self-care, and improve their good-health attitude. They are:

• patient education programs
• arthritis self-management programs
• arthritis support groups.

These programs teach people about osteoarthritis, its treatments, exercise and relaxation, patient and health care provider communication, and problem solving. Research has shown that people who participate in these programs are more likely to have positive outcomes.

Self-Management Programs Do HelpPeople with osteoarthritis find that self-management programs help them: Understand the disease Reduce pain while remaining active Cope physically, emotionally, and mentally Have greater control over the disease Build confidence in their ability to live an active, independent life

2. Stay active. Regular physical activity plays a key role in self-care and wellness. Four types of exercise are important in osteoarthritis management. The first type, strengthening exercises help keep or increase muscle strength. Strong muscles help support and protect joints affected by arthritis. The second type, aerobic conditioning exercises improve cardiovascular fitness, help control weight, and improve overall function. The third type, range-of-motion exercises, help reduce stiffness and maintain or increase proper joint movement and flexibility. The fourth type, balance and agility exercises, can help you maintain daily living skills.

You should start each exercise session with an adequate warm-up and begin exercising slowly. Resting frequently ensures a good workout and reduces the risk of injury.

Before beginning any type of exercise program, consult your doctor or physical therapist to learn which exercises are appropriate for you and how to do them correctly, because doing the wrong exercise or exercising improperly can cause problems. A health care professional can also advise you on how to warm up safely and when to avoid exercising a joint affected by arthritis.

3. Eat well. Though no specific diet will necessarily make your arthritis better, eating right and controlling your weight can help by minimizing stress on the weight-bearing joints such as the knees and the joints of the feet. It can also minimize your risk of developing other health problems.

4. Get plenty of sleep. Getting a good night's sleep on a regular basis can minimize pain and help you cope better with the effects of your disease. If arthritis pain makes it difficult to sleep at night, speak with your doctor and/or physical therapist about the best mattress or comfortable sleeping positions or the possibility of timing medications to provide more pain relief at night. You may also improve your sleep by getting enough exercise early in the day; avoiding caffeine or alcoholic beverages at night; keeping your bedroom dark, quiet, and cool; and taking a warm bath to relax and soothe sore muscles at bedtime.

5. Have fun. Although having osteoarthritis certainly isn't fun, it doesn't mean you have to stop having fun. If arthritis makes it difficult to participate in favorite activities, ask an occupational therapist about new ways to do them. Activities such as sports, hobbies, and volunteer work can distract your mind from your own pain and make you a happier, more well-rounded person.

6. Keep a positive attitude. Perhaps the best thing you can do for your health is to keep a positive attitude. People must decide to make the most of things when faced with the challenges of osteoarthritis. This attitude—a good-health mindset—doesn't just happen. It takes work, every day. And with the right attitude, you will achieve it.

Enjoy a "Good-Health Attitude" Focus on your abilities instead of disabilities. Focus on your strengths instead of weaknesses. Break down activities into small tasks that you can manage. Incorporate fitness and nutrition into daily routines. Develop methods to minimize and manage stress. Balance rest with activity. Develop a support system of family, friends, and health professionals.

Research Highlights

The leading role in osteoarthritis research is played by the National Institute of Arthritis and Musculoskeletal and Skin Diseases (NIAMS), a part of the Department of Health and Human Services' National Institutes of Health (NIH). NIAMS funds many researchers across the United States to study osteoarthritis. Scientists at NIAMS Multidisciplinary Clinical Research Centers conduct basic and clinical research aimed at understanding the causes, treatment options, and prevention of arthritis and musculoskeletal diseases.

Some key areas of research supported by NIAMS and other institutes within NIH include the following:

Biomarkers

In 2004, NIAMS and other institutes and offices of the NIH began recruiting participants for the Osteoarthritis Initiative (OAI). The OAI is a public-private partnership that brings together new resources and commitment to help identify biomarkers of disease for osteoarthritis. The partnership is designed to stimulate the development of tools and identify targets to combat the disease. Biomarkers are biological clues to increased susceptibility, early stages of disease, the course of the disease, and the response of people with osteoarthritis to the various therapies. Researchers are collecting images (x rays and MRIs), biological specimens (blood, urine, and DNA) and clinical data from over 4,800 people at high risk for having osteoarthritis, as well as those at high risk for progression to severe osteoarthritis during the course of the study. Four sets of OAI data have been released. Data are available to researchers. As of March 2010, there were over 1,500 registered users of the OAI data from 63 countries.

Two separate NIAMS-supported studies revealed that mechanical stress can affect the release of osteoarthritis biomarkers. The first study, on the role of mechanical stress on biomarker release from normal cartilage, showed that mechanical stress in the ranges experienced from normal to intense physical activity increased the turnover of cartilage and the release of biomarkers from the tissue and varied with the amount of applied stress. This suggests that mechanical stress regulates turnover of molecules in the cartilage extracellular matrix. The second, which examined release of cartilage- and bone-derived biomarkers in college athletes undergoing high-intensity training (rowers, cross-country runners, and swimmers) and in nonathlete controls, suggests that rowers undergo the highest bone turnover and runners the highest cartilage turnover. These results suggest that biomarkers can vary between individuals involved in different types of physical activities, and that the interpretation of biomarker analyses from osteoarthritis patients will need to take into account the type and extent of physical activity of the patients.

Diagnostic tools

A newly discovered method to detect and monitor cartilage changes could eventually enable doctors to diagnose osteoarthritis long before traditional x rays would show damage. It could also allow clinicians the opportunity to monitor the impact of therapeutic interventions very early in the disease process. The new noninvasive method uses an adaptation of established MRI techniques to separately visualize proteoglycans (molecular building blocks of cartilage) from water molecules in cartilage. Although further research and refinements are needed, the researchers are hopeful this approach could one day play an important role in the management of people with osteoarthritis.

Other NIAMS-supported researchers are combining a technique called microcomputed tomography (microCT), which yields high-resolution, three-dimensional x-ray images, with an x-ray-absorbing contrast agent to image the distribution of proteoglycans in the laboratory. By detecting proteoglycan content and distribution, the technique reveals information about both the thickness and composition of cartilage, both of which are important factors for monitoring the progression and treatment of osteoarthritis. So far, the technique's use has been limited to cartilage samples from animals. The researchers don't know yet if the technique would be successful in people. The hope is that their research will lead to ways to monitor cartilage changes with good resolution and little or no invasion of the tissue, and that eventually the technique will allow pharmaceutical researchers to obtain more detailed information about the effects of new drugs and other treatment strategies for osteoarthritis.

Pharmacologic treatments

Researchers are looking for drugs that would prevent, slow down, or reverse joint damage. One drug under study is doxycycline, an antibiotic drug that may stop certain enzymes known to damage cartilage. A recent clinical trial found that doxycycline had a modest effect on slowing the rate at which the joint space narrows in the knee. The trial also found that people who were taking doxycycline experienced joint pain less often than those who were not.

Scientists are also examining the bisphosphonate drug risedronate. In a recent British study of several hundred people with mild-to-moderate osteoarthritis of the knee, those treated with risedronate showed a clear trend toward reduced symptoms and improved joint structure.

More studies are needed for both drugs.

Complementary and alternative therapies

In recent years, the nutritional supplement pair glucosamine and chondroitin has shown some potential for reducing the pain of osteoarthritis, though no conclusive proof has emerged to date. Both of these nutrients are found in shark cartilage, the shells of shellfish, and pig ears and noses, and are components of normal cartilage.

The Glucosamine/Chondroitin Arthritis Intervention Trial (GAIT), which was cosponsored by the National Center for Complementary and Alternative Medicine (NCCAM) and NIAMS, assessed the effectiveness and safety of these supplements when taken together or separately. The trial found that the combination of glucosamine and chondroitin sulfate did not provide significant relief from osteoarthritis pain among all participants. However, a subgroup of study participants with moderate-to-severe pain showed significant relief with the combined supplements.

The 4-year trial was conducted at 16 sites across the United States.[5] The results were published in the Feb. 23, 2006 edition of the New England Journal of Medicine.

There are other complementary and alternative therapies under investigation. The longest and largest randomized, controlled phase 3 clinical trial of acupuncture ever conducted revealed that the therapy relieves pain and improves function in knee osteoarthritis, and it serves as an effective complement to standard care. The trial, supported by NIAMS and NCCAM, was the first with sufficient rigor, size, and duration to show that acupuncture reduces the pain and functional impairment of osteoarthritis of the knee. These results also indicate that acupuncture can serve as an effective addition to a standard regimen of care and improve quality of life for people who suffer from knee osteoarthritis.

The progression of osteoarthritis may be slower in people who take higher levels of vitamins D, C, or E, or beta carotene. NIAMS is sponsoring a clinical trial to see if vitamin D slows the progression of knee osteoarthritis. More studies are needed to confirm a possible role of this vitamin in osteoarthritis treatment.

Many studies have shown that green tea possesses anti-inflammatory properties. One study showed that mice predisposed to a condition similar to human osteoarthritis had mild arthritis and little evidence of cartilage damage and bone erosion when green tea polyphenols were added to their drinking water. Another study showed that when added to human cartilage cell cultures, the active ingredients in green tea inhibited chemicals and enzymes that lead to cartilage damage and breakdown. Further studies are needed to determine the effects of green tea compounds on human cartilage.

5 Clegg DO, Reda DJ, Harris CL, Klein MA, O'Dell JR, Hooper MM, Bradley JD, Bingham CO 3rd, Weisman MH, Jackson CG, Lane NE, Cush JJ, Moreland LW, Schumacher HR Jr., Oddis CV, Wolfe F, Molitor JA, Yocum DE, Schnitzer TJ, Furst DE, Sawitzke AD, Shi H, Brandt KD, Moskowitz RW, Williams HJ. Glucosamine, chondroitin sulfate, and the two in combination for painful knee osteoarthritis. NEJM 2006 Feb 23;354(8):795-808.

Healing joint injuries and cartilage damage

When the anterior cruciate ligament (ACL)—one of the main ligaments of the knee, which connects the shin bone to the thigh—is torn, it doesn't heal the way other tissues do. Unless the tear is repaired, the knee can become unstable, resulting in damage to the joint surfaces and the eventual development of knee osteoarthritis. Traditionally, repair has involved replacing the ligament with ligament or tendon graft, but NIAMS-funded research shows that filling the tear with a collagen- and platelet-rich gel material may enable it to heal, making a graft unnecessary. Physicians believe that preserving the patient's own ACL (if it becomes possible) would likely better protect the mechanics of the knee.

Other NIAMS-supported scientists are researching a way to patch damaged cartilage that will allow new cartilage to grow in and repair the damage. Using a unique weaving machine of their own design, the researchers have created a three-dimensional fabric scaffold patch. In laboratory tests, the scaffold had the same mechanical properties as native cartilage. In the future, surgeons will likely be able to impregnate custom-designed scaffold with cartilage-forming stem cells (taken from a person's own fat tissue, for example) and biochemicals that stimulate their growth, and then implant them into a patient in a single procedure.

Genetics studies

Osteoarthritis in all its various forms appears to have a strong but complex genetic connection. Gene mutations may be a factor in predisposing individuals to develop osteoarthritis. For example, scientists have identified a mutation (a gene defect) affecting collagen, an important part of cartilage, in patients with an inherited kind of osteoarthritis that starts at an early age. The mutation weakens collagen protein, which may break or tear more easily under stress. Scientists are looking for other gene mutations in osteoarthritis. Researchers have also found that the daughters of women who have knee osteoarthritis have a significant increase in cartilage breakdown, thus making them more susceptible to disease. In the future, a test to determine who carries the genetic defect (or defects) could help people reduce their risk for osteoarthritis by making lifestyle adjustments.

Patient education and self-management

When patients understand and feel that they have some control over their chronic disease, the course of their disease is often improved. One recent NIAMS-supported study found that improvement can be made in the self-management of osteoarthritis when spouses provide help. The intervention that was tested used spouse-assisted coping skills training and exercise training to improve physical fitness, pain coping, and self-efficacy in patients with osteoarthritis of the knee. The results from the study suggest that a combination of both spouse-assisted pain coping skills training and exercise training leads to more improvements than could be achieved with either intervention alone.

Other research shows that patient education and social support is a low-cost, effective way to decrease pain and reduce the amount of medicine patients use. One NIAMS-funded project involves developing and testing an interactive Web site by which health professionals and patients could communicate concerning appointments and treatment instructions, thus giving patients a greater role in and control of their care.

Exercise and weight reduction

Exercise plays a key part in a comprehensive treatment plan. Researchers are studying exercise in greater detail and finding out just how to use it in treating or preventing osteoarthritis. For example, several scientists have studied knee osteoarthritis and exercise. Their results included the following:

• Walking can result in better functioning, and the more you walk, the farther you will be able to walk.
• People with knee osteoarthritis who are active in an exercise program feel less pain. They also function better.

Research has shown that losing extra weight can help people who already have osteoarthritis. Moreover, overweight or obese people who do not have osteoarthritis may reduce their risk of developing the disease by losing weight.

Hope for the Future

Research is opening up new avenues of treatment for people with osteoarthritis. A balanced, comprehensive approach is still the key to staying active and healthy with the disease. People with osteoarthritis should combine exercise, relaxation, education, social support, and medications in their treatment strategies. Meanwhile, as scientists unravel the complexities of the disease, new treatments and prevention methods should become apparent. Such developments are expected to improve the quality of life for people with osteoarthritis and their families.

Where Can People Find More Information About Osteoarthritis?

National Institute of Arthritis and Musculoskeletal and Skin Diseases
National Institutes of Health
1 AMS Circle
Bethesda, MD 20892-3675
Phone: 301-495-4484
Toll Free: 877-22-NIAMS (877-226-4267)
TTY: 301-565-2966
Fax: 301-718-6366
Email: [email protected]
http://www.niams.nih.gov

National Institute of Arthritis and Musculoskeletal and Skin Diseases
Adapted from NIH Publication No. 10-4617

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Reviewed by athealth on February 6, 2014.

Family contributors to this handbook urged that its contents should help families who are new to the illness to deal with some of the fear, sorrow and bewilderment that the contributors themselves had endured when little information about schizophrenia was available. The handbook has been primarily developed, therefore, as a guide for families when early signs indicate that a relative may have schizophrenia, and as a resource for these families when a diagnosis of schizophrenia has been determined. To this end, it has been put together with help from many families with relatives who have schizophrenia. These people were willing to share their experiences in order to offer others practical, common-sense advice on what to do.

They noted that when they discovered that a relative was ill, they were frequently frustrated because medical professionals could not provide them with clear-cut answers. They learned that with schizophrenia definite answers often do not come easily. Families now encountering the illness should know that they have not failed their relative: that a considerable amount of trial and error may be necessary to learn the best way of handling the situations that arise from the illness.

Looking back on their own experiences, contributors to this book expressed a number of wishes:

"I Wish I Had

• had more information about the disease
• known that it is not a preventable disease
• understood that it is not simply a matter of confused or troubled thinking, that my relative was not just passing through a difficult phase
• had someone, relative or friend, who would tell me that my family member was not behaving normally
• sought help sooner
• asked more questions
• had more patience
• known that all my horrible feelings of guilt and shame were normal
• known that in real life all families aren't perfect like the Waltons on television, and
• known that I had the right to ask questions and seek help from the health care professions."

In keeping with the preceding list, the families have endeavoured throughout this handbook to provide you with a range of ideas. They caution that not all of these ideas will work for your relative, or be appropriate for your ethnic background and family traditions. And, of course, there are many areas that cannot be covered within the scope of this publication. Therefore, when asked what one piece of advice they would pass on to you, families stressed the importance of belonging to a chapter of the Schizophrenia Society of Canada (SSOC), or to a group associated with la Federation quebecoise des associations des familles et amis de la personne atteinte de maladie mentale in Quebec or to any other self-help group organized by and for families of people with schizophrenia. It is at support group meetings that you will receive information, advice, and understanding. Moreover, families found that as members of SSOC or similar organizations they could deal more effectively with their community and provincial health care systems. They have their own knowledge and experience of the illness, they know their rights, and they are better able to get help for their relatives. One woman stated, "Becoming a member of a support group is a crucial step in coming quickly to knowledge, understanding, and acceptance. The most important factor in coping is feeling that you are not alone, and that the situation is not hopeless."

The health care professionals consulted agreed that there is a lack of practical advice. They felt that they, too, would benefit from the common-sense knowledge now available from the experiences of families. They also agreed about the importance of joining a family support group. As one health care worker stated, "Under current circumstances, people with schizophrenia have very little voice. The nature of the illness makes it difficult for many to join together and lobby for their rights. The support of families and friends, as advocates, is needed to call attention to the issues."

What Is Schizophrenia?

Although an exact definition of schizophrenia still evades medical researchers, the evidence indicates more and more strongly that schizophrenia is a severe disturbance of the brain's functioning. In The Broken Brain: The Biological Revolution in Psychiatry, Dr. Nancy Andreasen states "The current evidence concerning the causes of schizophrenia is a mosaic. It is quite clear that multiple factors are involved. These include changes in the chemistry of the brain, changes in the structure of the brain, and genetic factors. Viral infections and head injuries may also play a role....finally, schizophrenia is probably a group of related diseases, some of which are caused by one factor and some by another." (p. 222).

There are billions of nerve cells in the brain. Each nerve cell has branches that transmit and receive messages from other nerve cells. The branches release chemicals, called neurotransmitters, which carry the messages from the end of one nerve branch to the cell body of another. In the brain afflicted with schizophrenia, something goes wrong in this communication system.

Many families of people with schizophrenia have found comparing the brain to a telephone switchboard very helpful in understanding the disease. In Schizophrenia: Straight Talk for Family and Friends (p. 41), Maryellen Walsh states "In most people the brain's switching system works well. Incoming perceptions are sent along appropriate signal paths, the switching process goes off without a hitch, and appropriate feelings, thoughts, and actions go back out again to the world....in the brain afflicted with schizophrenia...perceptions come in but get routed along the wrong path or get jammed or end up at the wrong destination."

Schizophrenia may develop so gradually that the family and even the person with the disease may not realize that anything is wrong for a long period of time. This slow deterioration is referred to as gradual-onset or insidious schizophrenia. A gradual build-up of symptoms may or may not lead to an acute or crisis episode of schizophrenia. An acute episode is short and intense, and involves hallucinations, delusions, thought disorder, and an altered sense of self.

Sometimes schizophrenia has a rapid or sudden onset. Very dramatic changes in behaviour occur over a few weeks or even a few days. Sudden onset usually leads fairly quickly to an acute episode. Some people have very few such attacks in a lifetime; others have more. Some people lead relatively normal lives between episodes. Others find that they are very listless. depressed, and unable to function well.

In some, the illness may develop into what is known as chronic schizophrenia. This is a severe, long-lasting disability characterized by social withdrawal, lack of motivation, depression, and blunted feelings. In addition, moderate versions of acute symptoms such as delusions and thought disorder may be present in the chronic disorder.

Psychiatrists divide the symptoms of schizophrenia into "positive" and "negative" categories. This can be confusing. Dr. E. Fuller Torrey explains that the adjective "positive" "...denotes those symptoms which are present and should be absent..."; "negative" those "...that are absent but should be present...." (Torrey, Surviving Schizophrenia: A Family Manual, revised edition, p. 79). This classification system is believed to be helpful for research purposes. It may suggest more promising forms of treatment and may help predict the outcome of the illness.

Positive Symptoms

• Hallucinations are thought to be a result of over-sharpening of the senses and of the brain's inability to interpret and respond appropriately to incoming messages. A person with schizophrenia may hear voices or see visions that are not there, or experience unusual sensations on or in his or her body. Auditory hallucinations, the most common form, involve hearing voices that are perceived to be inside or outside of the person's body. Sometimes the voices are complimentary, reassuring, neutral. Sometimes they are threatening, punitive, frightening, and may command the individual to do things that may be harmful.
• Delusions are strange and steadfast beliefs that are held only by the observer and that remain despite obvious evidence to the contrary. For example, red and green traffic signals may be interpreted by someone with schizophrenia as instructions from space aliens. Many people with schizophrenia who suffer from persecution delusions are termed "paranoid." They believe that they are being watched, spied upon, or plotted against. A common delusion is that one's thoughts are being broadcast over the radio or television, or that other people are controlling the ill person's thoughts. Delusions are resistant to reason. It is of no use to argue that the delusion is not "real.
• Thought disorder refers to problems in the way that a person with schizophrenia processes and organizes thoughts. For example, the person may be unable to connect thoughts into logical sequences. "Racing thoughts" come and go so rapidly that it is not possible to "catch them." Because thinking is disorganized and fragmented, the ill person's speech is often incoherent and illogical. Thought disorder is frequently accompanied by inappropriate emotional responses: words and mood do not appear in tune with each other. The result may be something like laughing when speaking of sombre or frightening events.
• Altered sense of self is a term describing a blurring of the ill person's feeling of who he or she is. It may be a sensation of being bodiless, or non-existent as a person. The ill individual may not be able to tell where his or her body stops and the rest of the world begins. It may be as if the body is separated from the person.

Negative Symptoms

• Lack of motivation or apathy is a lack of energy or interest in life that is often confused with laziness. Because the ill person has very little energy, he or she may not be able to do much more than sleep and pick at meals. Life for the person with schizophrenia can be experienced as devoid of interest.
• Blunted feelings or blunted affect refers to a flattening of the emotions. Because facial expressions and hand gestures may be limited or nonexistent, the ill individual seems unable to feel or show any emotion at all. This does not mean that the individual does not feel emotions and is not receptive to kindness and consideration. He or she may be feeling very emotional but cannot express it outwardly. Blunted affect may become a stronger symptom as the disease progresses.
• Depression involves feelings of helplessness and hopelessness, and may stem in part from realizing that schizophrenia has changed one's life, from realizing that the "special feeling" experienced in the psychotic state is an illusion and that the future looks bleak. Often the person believes that he or she has behaved badly, has destroyed relationships, and is unlovable. Depressed feelings are very painful and may lead to talk of, or attempts at, suicide. Biological changes in the brain may also contribute to depression.
• Social withdrawal may occur as a result of depression, as a result of a feeling of relative safety in being alone, or as a result of being so caught up in one's own feelings and fearing that one cannot manage the company of others. People with schizophrenia frequently lack the resources needed to show interest in socializing.

It is most common for schizophrenia to attack young people for the first time between 15 and 30 years of age, but the illness may develop as late as age 40. It occurs in all races, in all cultures, in all social classes, and in both sexes. The risk for anyone in the population becoming schizophrenic is generally accepted as one percent. This means that about 250,000 Canadians will suffer from this illness at some point in their lives.

Schizophrenia is not now curable, but through the use of anti-psychotic medication and psychotherapy, the positive symptoms of schizophrenia can usually be controlled. Full recovery may occur, but it cannot be predicted. In some cases people get better on their own. Remission usually comes within the first two years and is rare after having the disease for five years. With advancing age, particularly after 40, life for the person with schizophrenia often becomes less difficult: positive symptoms tend to diminish and medication can often be taken at a low dose or less frequently.

An Illness Not Understood: The Stigma Of Schizophrenia

The stigma of schizophrenia is a barrier to those trying to rehabilitate themselves. It is also a very real problem for their families. Therefore, those involved with schizophrenia are concerned about the dozens of misconceptions about the illness. Schizophrenia is a disease that is not well understood and is greatly feared. Most of what people think they know about schizophrenia is wrong. People confuse schizophrenia with split personality or multiple personality. They believe that people with schizophrenia are violent and dangerous. A limited number are, of course, but media publicity about particularly frightening and bizarre crimes of violence committed by people with mental disorders has left the public with the impression that most persons with schizophrenia are violent. This is not true. The majority are not. However, wide differences in the effect that schizophrenia has on different people and the difficulty in understanding the actions of someone in a deeply psychotic state, whose thinking is thoroughly confused, reinforce the public's concern. Some believe that people with schizophrenia have weak personalities and have "chosen" their madness. Many believe that schizophrenia is the result of bad parenting and childhood trauma.

One parent stated that he was often accused of abandoning his daughter when he took her to the hospital. Another parent said that clerks in stores ignored her son when he asked for help or tried to make a purchase. Some religious groups hold the view that the illness is one of God's punishments.

The families consulted believe that it is important to understand how the stigma surrounding schizophrenia developed. The term "schizophrenia" was introduced in 1911 by a Swiss psychiatrist, Eugen Bleuler. The word comes from the Greek schizo meaning "split" and phrenia meaning "mind." Bleuler wanted to convey the split between what is perceived, what is believed, and what is objectively real. He did not mean that the person with schizophrenia is split into two personalities, but that there is a splitting away of the personality from reality. The concept of "split," however, has led to schizophrenia being confused with multiple personality, a less common and very different psychiatric disorder, much publicized through such stories as Dr. Jekyll and Mr. Hyde, The Three Faces of Eve, and Sybil. Today, many health care professionals regret the existence of the term "schizophrenia" because of the confusion and misunderstanding that surround it.

Added to this basic confusion is a history of blame. Families agree that blame is a major stumbling block to seeking and receiving support.

In the late 1800s and the early part of this century, three competing views about the nature of mental illness gained acceptance in the psychiatric profession.

Biological psychiatry grew from the research of Dr. Emil Kraepelin in Germany; psychoanalysis from the findings of Dr. Sigmund Freud and his colleagues in their studies on neuroses in Austria; and behaviourism from the work of Dr. John B. Watson in the United States. Kraepelin's views predominated the thinking of psychiatrists in Europe, while both psychoanalysis and behaviourism (see Glossary) flourished in North America (Andreasen, The Broken Brain, pp. 11-20).

In the 1950s, many North American psychiatrists began to believe that schizophrenia resulted from a form of psychic trauma inflicted on the individual early in life, typically by parents. Mothers of those with schizophrenia were believed to be over-anxious, obsessive, and domineering. These women were labelled "schizophrenogenic." One mother said she almost understood this. "When you are pushing to get help for your child, it is easy for some to 'put the cart before the horse' and point to this pushiness and tension as the cause of your child's problem, rather than the result of it." Gradually, blame was placed on the family as a unit. Theorists noticed poor family functioning where there was someone with schizophrenia, and confused the effect of the illness with its cause.

Two other theories contributed to the mythology surrounding schizophrenia. The American psychoanalyst Thomas Szasz pronounced that schizophrenia, like all other mental illnesses, is a set of behaviours, not a disease. The late R.D. Laing, a British psychiatrist, suggested that it is really a "healthy" response to an insane world. People burdened with terrible stress act "crazy" in an effort to adapt.

Scientific research and factual data have discredited these theories. Unfortunately, they were all popular enough at one time to have gained public attention. You may still run into health care professionals who will suggest that you "caused" your relative's illness, and that a continuing family relationship may hinder recovery.

Aside from the history of blame, the symptoms of the illness itself can often add to the stigma of schizophrenia. The odd and unpredictable behaviour, poor functioning, or lack of good health habits can be disturbing to others. News coverage on acts of violence or suicides committed by people reported as having schizophrenia serve to add to the stigma, even if unintentionally.

Families often find the stigma difficult to handle. Some try to hide the illness in the family. Others, however, prefer to speak openly about it. They say this gives peace of mind and allows them to join with others to try to remove the stigma.

Recognizing That Something Isn't Right

Family members commonly reported that they knew at an early stage that something wasn't right with their relative. They sensed that their son or daughter, brother or sister, husband or wife was not merely going through a phase, was not in a temporary bad mood, was not reacting to the overuse of drugs or alcohol. Some, however, said they were taken completely by surprise. They assumed that whatever unusual behaviour they had observed was due either to normal adjustment or to some degree of delinquency. All urge that people reading this Handbook trust their instincts and seek help immediately if they become concerned. Remember that you know your relative best.

Early Warning Signs - a list compiled from the focus group discussions

• inability to sleep, unusual waking hours, day and night mixed up
• social withdrawal, isolation, indifference
• deterioration in social relationships
• hyperactivity, or inactivity, or periods of alternation between the two
• inability to concentrate, noticeable difficulty in making decisions
• unusual preoccupation with religion or the occult
• hostility, suspicion, fearfulness
• over-reaction to peer or family disapproval
• deterioration in personal hygiene
• frequent hitch-hiking trips for unclear reasons
• excessive writing or childlike printing without clear meaning
• unusual emotional reactions
• flat, expressionless gaze
• staring, not blinking, or blinking incessantly
• unusual sensitivity to stimuli (noise, light)
• smelling and tasting things differently
• peculiar use of words or language structure
• bizarre behaviour: refusal to touch people, constant wearing of gloves, shaving head or body hair, cutting oneself, threats of self-mutilation

None of these signs by themselves indicate the presence of mental illness. Few of those who helped compile this list said that they had acted on these early warning signs. With the knowledge of hindsight, these family members urge you to seek medical advice if several of the behaviours listed above are present, or constitute a marked change from previous behaviour and persist over a few weeks.

Many families noticed that there was no logical flow of ideas during conversation. Others noticed that their relative began speaking out loud to no one, and did not seem to hear other people speaking to him or her. One young man began researching all religions and cults. Another young man began turning off all radios because he believed that he was receiving messages through this medium. In some families, their relative destroyed his or her bank book, birth certificate, and photographs. Signs of paranoia became apparent in many cases. A relative would begin talking about plots against him or her and had "evidence" that he or she was being poisoned. One man said that his wife assumed that whenever she saw people talking, they were talking about her.

Eventually, families reached a point where they could not tolerate the differences in behaviour any longer. Many commented that there was much confusion in the home, with some resentment and anger toward the person behaving strangely. Siblings often felt that their brother or sister was merely lazy and shirking responsibilities; children were embarrassed and confused by their parent acting so differently; parents disagreed on how to handle their child's problems; the stability of the marriage frequently suffered. All contributors stressed that you should not wait for tensions to reach such extreme levels. You should seek outside help from your family physician or some other appropriate source.

Where To Get Help: Seeking Medical Advice

When you have decided to make a doctor's appointment, there are several things you can do to help make the situation a little easier for everyone. First, be aware that your relative may not want to go to a doctor. He or she may be genuinely unaware of the abnormality of the symptoms. Lack of insight about the illness may cause your relative to deny that anything is wrong. Or, if aware that something is wrong, he or she has probably spent weeks or months in a state of confusion and fear, trying to understand the problem on his or her own. Your relative may have put a lot of energy, talent, and intelligence into creating an act designed to convince everyone that things are "normal." When you suggest the need to see a doctor, you are not offering comfort: you may be confirming strong, unspoken fears. Hostile or patronizing suggestions such as "You've been really weird lately," or "Why are you acting like this? You're being silly and lazy," will alienate this person further. It is also unwise to say anything that could suggest that you have been discussing his or her behaviour behind the person's back: "We've all discussed your strange behaviour, and we agree that you need to see a doctor." Nor will it help to focus on the feelings and concerns of others: "Your behaviour is upsetting your mother," or "Your father is very angry with you."

It may be useful to focus on a particular symptom such as the inability to sleep, a lack of energy, or sadness and crying. You can then say something like: "I know you haven't been sleeping well at night, and you are so tired during the day. Why don't we make an appointment to see the doctor?" The doctor then can be perceived as someone who might be able to help rather than as a judge who will be critical.

If your relative agrees to see a doctor, ask the receptionist for a double booking - most appointments are only l0 or 15 minutes long - so that you will not feel rushed. Then, after you have arranged the appointment, send the doctor a letter outlining your concerns as clearly as possible. In addition to assisting the doctor, this will help you be clear about what has been happening. The following is a sample letter.

Dear Dr. Smith,

I have made an appointment for my daughter, Jane, to see you on Monday, May 8, at 10:00 a.m. Three months ago, Jane began acting in an unusual manner. The following are some of the behaviours that our family has noticed. She cannot sleep at night, has dropped out of her favourite clubs, refuses to see any friends, cries two to three hours a day, and will not allow anyone to touch her.

I have enclosed copies of her last two school reports, and a list of comments made by her friends. I believe that a medical assessment is necessary, and I am anxious to hear your opinion.

Sincerely

If your relative refuses to see a doctor, however, you should still make an appointment and go on your own. Again, seek a double booking, and send a variation of the above letter. After you have spoken to the doctor, you may be able, as a team, to get your relative in for an appointment.

If you have succeeded in convincing your relative to go to the doctor, you need to be aware that this first visit may not solve anything or answer any questions. Families who have been through this admitted that they had hoped this doctor's visit would be the "cure-all," and were frustrated when nothing seemed to happen.

During a doctor's appointment, your relative will rarely exhibit the behaviour that you have seen. Some people find talking to a doctor very stressful, and many people with schizophrenia have said that they found themselves going blank during the visit.

However, many people with schizophrenia said that their fear of going to see a doctor was somewhat alleviated when the doctor was able to ask the right questions; that is, because of the letter received in advance, the doctor was able to focus on the symptoms that were bothering the patient, and the patient found that he or she was more willing to open up to the doctor. For example, people found it comforting if the doctor said something like: "I understand you've been crying a lot lately. You must feel very confused about this."

Keeping Record

Now that you have begun the process of getting help for your relative, families advise that you begin keeping a record that documents your relative's behaviour, and the steps taken by you and others in the course of the illness. This may involve a good deal of effort, but the value was emphasized again and again by focus group participants and others. Your record will help you when a doctor is taking a history, or when you change doctors. It will also keep your mind clear about the course of the illness and the treatment that has been tried.

The record should be clear and precise and in point form. Avoid vague words and rambling descriptions. Medical practitioners stress the importance of listing behaviours that can be observed and measured. For example, you are noting a behaviour if you say that Joe refuses to wash, and wears the same clothes every day. This is more useful than saying that Joe looks terrible. Another example: you are noting a behaviour if you say that Susan cries every night for at least one hour. Again, this is much more useful to the doctor than, "Susan seems so sad." Write down the details of the noted behaviour, and include the day, time and duration, if applicable. Keep a record of your appointments with your doctor, and keep copies of all correspondence.

It is essential that you treat your record as a confidential document, one that should be used with great discretion. Moreover, if your relative has paranoid tendencies, knowledge of your record may only convince him or her that you are spying. On the other hand, some families have found that it is helpful to have their relative's involvement in the record keeping. If you feel it is appropriate, encourage your relative to jot down his or her thoughts and feelings.

Diagnosing Schizophrenia

There is, as yet, no simple lab test to make a diagnosis. Therefore, the diagnosis is based on the symptoms - what the person says and what the doctor observes.

To reach a diagnosis of schizophrenia, other possible causes such as drug abuse, epilepsy, brain tumour, thyroid or other metabolic disturbances, as well as other physical illnesses that have symptoms like schizophrenia, such as hypoglycemia and Wilson's disease, must be ruled out. The condition must also be clearly differentiated from bipolar (manic-depressive) disorder (see Glossary). Some patients show the symptoms of both schizophrenia and manic depression. This condition is termed "schizoaffective" disorder. Its relation to schizophrenia is unclear at present.

A diagnostic system for mental illness widely used in North America was developed by a task force of the American Psychiatric Association. The results of its work was published in a handbook called The Diagnostic and Statistical Manual of Mental Disorders (DSM). Andreasen noted in her book, The Broken Brain: The Biological Revolution in Psychiatry, that the third version of the Manual, commonly known as DSM-III, squarely placed the emphasis in diagnosis on "the careful study of objective symptoms" (p. 154). She went on to say that "the most important implication (of DSM-III) is a shift from the more psychoanalytic to a more medical approach" (p. 158).

Since DSM-III was published in 1980, further refinements have taken place. The current edition of the Manual is DSM-III-R (revised, 1987).

No matter what happens during the first visit to the doctor, the diagnosis of schizophrenia usually takes a long time. This is because it can be a very difficult diagnosis to make: the symptoms necessary for diagnosis either go unrecognized, or do not show themselves fully, until the illness is advanced. There are also many differences among individuals in the way in which symptoms present themselves. Most doctors, well aware of the stigma that still surrounds this illness, don't like to voice their suspicions until they are sure that this diagnosis is correct.

If your doctor does diagnose schizophrenia, do not assume that he or she has ruled out the possibility of another illness. Do not hesitate to ask about other illnesses and ask on what grounds the doctor has determined that schizophrenia is the problem. Where an illness as confusing and variable as schizophrenia is concerned, you should ask for a second medical opinion and a psychiatric referral, whether or not you are satisfied with your doctor's response. A request of this nature is perfectly acceptable. Do not feel that the doctor will take it as a personal criticism.

Confidentiality

Sooner or later families run up against the legal and ethical issue of confidentiality. It is a basic principle in the practice of medicine. Information about a patient cannot usually be released, except to members of the treatment team, unless that patient has given written consent. The exceptions are when a patient is under age or is deemed to be mentally incompetent. Under the law in some jurisdictions, a priority list of those who may act on his or her behalf has been established for anyone judged to be mentally incompetent. It often comes as a surprise to parents, for example, that they are not first on such lists. In the case of a spouse in Ontario, if the person who is ill has appointed someone else when mentally competent, that person ranks before the spouse.

It is natural for care-giving family members to want to know as much as they can about their relative's situation to be able to help as much as possible. Health care professionals recognize this, but their hands may be tied because no patient's consent has been given. Ideally, written authorization for the doctor to talk to the family should be obtained when the patient is well. However, if the patient is unwilling to give consent, try asking the physician whether there is anything that you can do to help obtain it. Remember, also, a physician can speak if there is a risk of physical violence.

Legal requirements on disclosure vary among provinces and territories. You may also ask a health care professional what is needed in your particular province or territory. It may be worth seeing if it is possible to attend some of the health care team meetings or consultations with the patient. The patient may be more willing to accept this than to sign a consent form for the release of information.

A physician (and other health care professionals) will normally look to family members to supply information about the patient. At the doctor's discretion, your information may be passed on to the patient. Indeed, it is probably wise to assume this. You may wish to consider, therefore, the effects of telling your relative directly about any information that you have given to a member of the care team. Care-providers often find that this enhances their care-giving relationship with the patient.

What To Do In A Crisis

Most families reported that a crisis or psychotic episode - that is, a severe break with reality - occurred a few months to a year after they began to notice unusual behaviour. Some said, however, that the crisis occurred with little or no warning.

During a crisis episode, your relative will exhibit some or all of the following symptoms: hallucinations, delusions, thought disorder, and disturbances in behaviour and emotions. Families who have been through these psychotic episodes warn that no amount of preparation can fully protect you from the shock, panic, and sickening dread you will feel when your relative enters this stage of schizophrenia. Understand also that your relative may be as terrified as you are by what is happening: "voices" may be giving life-threatening commands; snakes may be crawling on the window; poisonous fumes may be filling the room. You must get medical help for your relative as quickly as possible, and this could mean hospitalization. If your relative has been receiving medical help, phone the doctor or psychiatrist immediately. Ask which hospital you should go to and for advice about what to do.

Guidelines that May Help You In Crisis

DO'S - Try to remain as calm as possible. Decrease other distractions; turn off the television, radio, etc. If other people are present, ask them to leave the room. Talk one at a time. Try saying, "let's sit down and talk," or "let's sit down and be quiet." Speak slowly and clearly in a normal voice. Make statements about the behaviour you are observing: "You are afraid/angry/confused. Please tell me what is making you afraid, etc." Avoid patronizing, authoritative statements such as "you are acting like a child," or "you'll do as I say, young lady." Repeat questions or statements when necessary, using the same words each time. Don't rephrase the question in the hope that this will make it clearer. Allow your relative to have personal "space" in the room. Don't stand over him or her or get too close. Understand that too much emotion on your part can upset your relative further.

DON'TS - Don't shout. If your relative appears not to be listening to you, it may be because other "voices" are louder. Don't criticize. Your relative cannot be reasoned with at this point. Don't challenge your relative into acting out. Avoid continuous eye contact. Don't block the doorway. Don't argue with other people about what to do.

It is far better, if possible, to have your relative go to the hospital voluntarily. If you do not think your relative will listen to you, see if a friend can talk the person into doing so. Some have found that presenting their relative with a choice seemed to work. "Will you go to the hospital with me, or would you prefer that John take you?" Such an approach may serve to reduce the person's feeling of helplessness. Offering choice, no matter how small, provides some sense of being in control of the horrible situation in which they find themselves.

Families warn that sometimes a psychotic episode will involve violence. In such situations, there will be no time to talk calmly to your relative, or to phone the doctor or psychiatrist to ask for advice. Because your relative is in an altered state of reality, he or she may try to act out the hallucination - for example, shatter a window. Your relative may threaten to harm him or herself, to hurt you, or to damage property. One mother said that her son kept yelling that God was ordering him to kill her. In such situations, you must do whatever is necessary to protect yourself and others (including the ill person) from physical harm. It may be that the wisest course is to leave the premises. The alternative might be to secure your relative in a room while you phone or go for help. Such an action, however, would be advisable only under extreme circumstances. In such charged situations, probably your only choice is to phone the police. It may be unwise to drive your relative to the hospital by yourself: do so only if someone else can go with you.

Police Involvement

Families who have been through this agreed that they were hesitant to call the police. They felt that they were treating their relative as a criminal, and that they were giving up and abandoning the person, however, in some situations they had no other choice. Many families discovered that the statement, "I am calling the police," calmed their relative. It let the person know that his or her behaviour would not be tolerated. One father said that the sight of the police uniform helped to defuse the situation. But another father, disagreeing with this tactic, warned that because his daughter was paranoid, seeing a police officer in her home was like waving a red flag and infuriated her further. Remember to trust your instincts: you know your relative better than anyone else and have a better chance of judging how he or she may respond to different tactics.

When you phone the police, explain that your relative is in urgent need of medical help, and that he or she has been diagnosed as having schizophrenia (if this is the case). Briefly describe what your relative is doing - making threats, damaging property - and state that you need police assistance to get your relative to a hospital. Make sure that the police know whether your relative is armed, and whether or not there are accessible weapons in the home.

When the police arrive, those families who have been through this experience warn that you must be prepared for a variety of responses. Some police forces have specially trained officers who know how to handle psychiatric emergencies. Some police officers have little knowledge of, or experience in dealing with, this sort of crisis. Some officers may be extremely sympathetic, while others may be quite unhelpful. You might be asked by the police to lay a charge. You should think very carefully of the implications of doing so. Know too that your own attitude or emotional state may be a factor in conditioning police reaction. In your record, document everything that happens when you phone the police: note how long it took for someone to respond to your call; note the officers' names and badge numbers; note briefly how they treated you and how they handled the situation.

Once in your home, the police will try to assess the situation and decide what should be done. While the police are present, you may have the chance to phone your relative's doctor or psychiatrist to ask for advice. Inform the police if you have been advised by the doctor to take your relative to a particular hospital.

After the police have the information they need, they may take your relative to a hospital emergency department. It is the responsibility of the police to report all relevant information to the doctor. They are usually required by law to stay with your relative until an assessment is carried out. If you have not been able to go with the police to the hospital - although you should go if at all possible - ask the police to phone you back and let you know what has happened. We recommend that you speak directly to the doctor; the emergency head nurse should be able to help you get in touch. You will want to find out if your relative has been admitted to the hospital, and whether or not treatment is being given. Find out the name of the admitting physician. Record all of this information.

Hospital Admission and Mental Health Legislation

Admissions in all provinces and territories are governed by the mental health legislation in effect in each area. Although there are significant variations between the different Acts, all make a distinction between voluntary and involuntary admission. Voluntary admission is usually based upon a request from the prospective patient together with a recommendation from his or her physician. Involuntary admission is one that occurs without the patient's consent. Such a decision rests on an assessment of the seriousness of the patient's condition.

In many jurisdictions, although the language used may differ, involuntary admission is the result of a conclusion that the person is suffering from a mental disorder and is a danger to him or herself, or to others. Some jurisdictions allow involuntary admission without evidence of dangerousness, if it is established that substantial deterioration in the person's health will occur if the person is not treated immediately. In some, the application for such an admission must be supported by examinations by two physicians. In others, the certificate of admission must be signed by a physician other than the one signing the application.

An explanation of the legal situation may be provided to you by a health care professional. If not, ask for one. Other possible sources of information are a local SSOC chapter or another family self-help group in your area. Useful brochures on mental health legislation may be available from your provincial or territorial health department, or you might consider obtaining a copy of the relevant legislation from the publications office of the province or territory.

In crisis situations, you might normally expect your ill relative to be admitted, if not voluntarily, then involuntarily. However, this may not be the case. Your relative may refuse to be admitted, and the medical examination may not result in an assessment that would support involuntary admission. If you are not able to be at the hospital, it is possible that your relative may be allowed to leave before you are notified. If your relative is not admitted, families who have been through the experience recommend strongly that you consider other possible courses of action, including, in some circumstances, leaving your relative on his or her own. Without the alternative of returning home, the hospital may appear to be a safe haven to the ill individual.

Emergency Planning

Contributing families recommend strongly that you have an emergency plan ready for crisis episodes.

• Have handy a list of phone numbers for: the police, the doctor, the psychiatrist, and an emergency centre for psychiatric admissions.

• Ask your relative's doctor or psychiatrist ahead of time which hospital to go to in case of an emergency.

• Know which family members and friends your relative may trust more than others in an emergency.

• Find out whom you can phone for support at any time of the day or night.

• If applicable, decide who will take care of other children.

• Consider explaining the situation ahead of time to your local police department to get advice about what to do.

• Know that the crisis situation may be less frightening to your relative if the emergency procedure has been explained and is anticipated.

Hospitalization

Your relative's doctor or psychiatrist may have recommended hospitalization for diagnosis early on in the assessment. If not, hospitalization will usually occur during or after a psychotic episode.

The availability of a bed may determine where your relative is hospitalized. In communities where there is a psychiatric hospital, your relative could be admitted there or sent to the psychiatric ward of a general hospital. The former usually offers the patient a wider range of supportive therapy and counselling programs. However, should he or she have another medical condition in addition to schizophrenia, a general hospital could be preferable. In addition, the patient might find a smaller setting easier to cope with, at least in the early stages of treatment. Normally. transfers can be arranged to meet any special need of the patient.

Families and health care professionals emphasized the importance of hospitalization for accurate diagnosis. The hospital setting allows intensive observation and testing, which will help to build up a picture of your relative's condition. When admitted to a hospital, a patient' s valuables and money will normally be locked up for safekeeping until discharge. Some families suggest that it is worth making a list of these and any items of clothing and other personal effects that your relative takes to the hospital. This can be helpful to hospital staff and is a safeguard against subsequent misunderstandings.

When admitted, your relative will receive a thorough psychiatric examination and should also be given a complete physical check-up. The psychiatric examination is an interview process used to understand how your relative is thinking and feeling at that moment and to obtain a clearer idea of his or her situation.

If you are at the hospital with your relative, you will probably be interviewed. If not, you may request an interview. The purpose of the testing and interviewing is to achieve a diagnosis (if one has not already been made by your relative's doctor or psychiatrist), to determine appropriate treatment, and to decide if your relative should be treated further as an in-patient, or if out-patient psychiatric appointments are recommended.

The assessment also allows a decision to be made as to whether the patient is mentally competent, should this be an issue. If the person is deemed to be mentally incompetent, there is a need for a substitute decision-maker. Provisions regarding this vary across Canada. Mental health legislation in some jurisdictions, such as Ontario, has established a precise list of substitute decision-makers, ranked in the order in which they must be approached. In others, the rules are more general.

Ontario legislation also formally defines the test to be used by physicians to determine mental competency. The patient is mentally competent if he or she "has the ability to understand the nature of the illness for which treatment is proposed and the treatment recommended and is able to appreciate the consequences of giving or withholding consent." (Section 1. Ontario Mental Health Act, as amended, Pocket Criminal Code 1990, incorporating 1985 Revised Statutes of Canada and Subsequent Amendments, eds, Gary P. Rodriguez, Jean Oyellet. Agincourt, Ontario: Carswell Company Limited, 1989.)

In cases where the patient has an estate, the question of mental competence may also arise. All jurisdictions have legislation that provides for the appointment of a trustee to make financial decisions for someone deemed to be mentally incompetent.

At the present time, the concept of "mental competence" is receiving considerable attention, and there may well be significant changes in mental health legislation in this area.

Relations with Hospital Staff

When asked what advice they would give to people at this point, contributing families noted that the main goal during this period of hospitalization should be to establish effective communications with hospital staff. Most relatives arrive at the hospital in a state of panic and shock, and want to know what is going on and what will happen next. They do not understand the complicated hospital procedures. "Experienced" families state that it is important now that you remember your objective - to get help for your relative. They suggested a number of things you can do that will assist you in your efforts.

• Keep a record of everything while you still remember. List the questions you ask, the responses you're given, the names and phone numbers of the staff attending your relative. Keep a record of the treatment given, including dates and times. Keep copies of anything you mail, and all notices and letters you receive from the hospital.

• Recognize that hospital staff (and other health care professionals) are there to help your relative. Make it clear that you understand that this is their prime responsibility and that you are ready to do all you can to help them. See if you can establish a "partnership" relationship between the psychiatrist, your relative and yourself.

• Find out the names of the assigned psychiatrist, psychiatric nurse, and social worker. These are the people responsible for the treatment of your relative. You should be able to phone and speak with them if you have any questions and concerns. Remember that the amount of information you are given may be limited by the constraints of confidentiality.

• Be polite and assertive when talking to hospital staff. Use sentences such as, "Please help me," "Please tell me where I can get information about...."

• Ask for a meeting with the assigned psychiatrist and social worker. Try to get to know them at the first meeting. At later meetings come prepared with a list of questions written down. Let them know of your willingness to provide them with information about the patient.

• Keep all conversations to the point. Ask for specific information. Some sample questions: What are the specific symptoms you are most concerned about? What do these indicate? How do you monitor them? What is the medication being given? How often? How much? Have there been side effects? What is being done about them?

• Ask for clarification of all answers. Do not settle for jargon and vague information.

• If the psychiatrist is too busy to talk to you, write out what you want to ask or say (in point form), and deliver the letter to his or her office.

• If you phone to speak to someone who is not available, leave your name, your relative's name, and your number. Then stay home and keep your phone line as clear as you can so that the staff member can return your call.

• Consider having a friend or relative who is less directly involved come with you to meetings at the hospital. This person can be a calm and reasonable presence should you be overwhelmed by emotion and frustration.

• Write letters of appreciation or criticism, and send them to the head of the hospital and the ward of the unit. Consider sending copies to the College of Physicians, Nursing, etc., if you think it appropriate. Be specific and brief in your letters.

• Be a member of SSOC. When all else fails, help from the chapter or group may possibly allow you to cut through hospital "red tape" and get answers.

Families who have had relatives hospitalized warn that you should avoid some actions. They will not be helpful to your relative.

• Do not be rude. Do not let your fears and anxieties turn into anger. Do not approach the situation with a "chip on your shoulder". The illness is the enemy, not the staff.

• Do not bother the staff with unnecessary special requests and excessive demands.

• Do not make long, detail-filled telephone calls to staff.

• Do not allow yourself to be intimidated. Do not try to intimidate the staff.

• Do not come late to appointments. If your appointments are cancelled repeatedly, put your concerns in a letter.

Families make the following suggestions about what you can do to help your relative in the hospital.

• Familiarize yourself with the routines of the ward.

• Discuss what is happening with your relative. Tell him or her about anything you have done to try to get better help.

• Respect your relative's wishes. If, for example, he or she seems upset by long family visits, make your visits brief and share them with other relatives and friends.

• Do not undercut staff or criticize specific staff members.

• Do not criticize training or activity programs.

• Consider your relative's complaints realistically. Act on those complaints that appear to be real rather than imagined.

• Do all you can to make it clear to your relative that this period of hospitalization is important.

• If you should feel that your relative is being badly treated or is not receiving adequate care, and if polite approaches to the immediate caregivers fail to resolve your concerns, you may wish to raise the matter with the head of patient care.

Treatment

Treatment for schizophrenia involves both medication and supportive counselling. Depending upon the severity of the symptoms, someone with schizophrenia may be treated as an out-patient or, sometimes, as an in-patient at a hospital. Families stress that it is important for both you and your relative to understand what is involved in treatment and to take an active role in planning the most suitable course.

Medication

In the 1950s a new group of drugs was developed. These neuroleptics or anti-psychoticdrugs are highly effective in dealing with the positive symptoms of schizophrenia. Some of these symptoms can normally be brought under control in a matter of days; others in weeks. Usually, a period of months is required to achieve a fully stabilized condition. For people with recurrent schizophrenia, neuroleptics are used to try to prevent a relapse into acute symptoms. Unfortunately, the negative symptoms of more chronic schizophrenia, such as depression and apathy, do not respond as well to medications.

Neuroleptics block receptors for the brain chemical, dopamine, on dopamine-transmitting nerve cells. Dopamine is one of the brain's neurotransmitters and carries messages from certain specific nerve cells to other specific cells in the brain. Evidence is accumulating that some people with schizophrenia may either have too many dopamine receptors, or else have receptors that are overly sensitive to dopamine. Because of this, the brain of a person who has schizophrenia may receive too many messages along these pathways. These extra messages may compete in some way with signals transmitted through other chemical pathways, and may result in the production of psychotic symptoms.

In North America, there are about 30 varieties of neuroleptics in common use. Each drug has several names: the generic or official name, and the brand names given to the drug by each of the pharmaceutical companies that manufacture it (see Appendix I).

Although all currently used neuroleptics interfere with dopamine, each drug differs in how it affects other brain chemicals. For this reason, individuals respond somewhat differently to the different neuroleptics. In addition, because of differences in sensitivity, individuals also respond differently to a given dosage. Some of the physical differences responsible for differing responses are sex, weight, metabolic rate, physical health, and severity of symptoms. Finding the right neuroleptic and the right dosage is usually a matter of trial and error. For some, it may take months, even years, before the right combination is found. It is important to remember that drug dosages need to be regularly monitored.

For almost everyone, the dosage of medication is lowered as time goes on. The maintenance dosage is the lowest dosage at which the patient's condition is stable. An increase from this level may be prescribed by the physician if a relapse occurs, if signs indicate that a relapse may be imminent, or if the patient is undergoing stress.

Neuroleptics are given in either tablet or liquid form, or as an intramuscular injection. Most patients are treated initially with oral medications, which provide a steady, low level of the medication in the system. People who are experiencing an acute attack of schizophrenia are often given a short-acting injection, which acts more rapidly than oral medications, to decrease the most frightening symptoms. As an out-patient, an individual may be treated with tablets or with a long-acting injection.

Other than a lack of insight about the illness. the most common reason for an individual to refuse to take medication is the complaint of side effects. Side effects cause different levels of discomfort and vary from person to person. The most common side effects are acute dystonia (a stiffening of muscles in the neck and jaw, which usually appears shortly after starting medication and is easily treated), drowsiness, faintness, lethargy, dry mouth, blurred vision, sensitivity to the sun, weight gain, and constipation. These problems are usually cleared up with a change of neuroleptic, a change in dosage, or the addition of another medication to control the side effects. Tardive dyskinesia is a side effect that may appear after a long period of medication. It consists of involuntary facial movements - spasms of the tongue and mouth. Sometimes it is accompanied by movements of limbs or other muscular systems. When the dosage of medication is reduced - there will be a temporary worsening of the symptoms before there is an improvement. For some people, there is a risk that tardive dyskinesia may become permanent. This risk increases with age, but occasionally there are young patients who are disabled by tardive dyskinesia.

Families warn that some individuals are bothered more than others by side effects. They may feel embarrassed by involuntary movements, or frustrated by a lack of energy. These individuals may quite easily decide to stop their medication. In such a situation, families and health care professionals say that it may be preferable to lower the dosage of medication, even though some minor symptoms persist. This should be fully explained and discussed with your relative.

Families state that it is important that you understand as much as possible about side effects. This knowledge will prevent many misunderstandings - for example, you will not mistake lethargy for laziness, or become frightened by tremors and you will be able to provide valuable information to your relative's doctor. Families suggest that you think of yourself as the "nurse on the ward" and document all you can about how your relative is responding to the prescribed medication. For more information about side effects, you can speak to a pharmacist.

Supportive Therapy

In Surviving Schizophrenia, Torrey describes the role of psychotherapy. Supportive therapy "may provide a patient with friendship, encouragement, practical advice such as access to community resources or how to develop a more active social life, vocational counselling, suggestions for minimizing friction with family members, and, above all, hope that the person's life may be improved. Discussions focus on the here-and-now, not the past, and on problems of living encountered by the patient as he or she tries to meet the exigencies of life, despite a handicapping brain disease." (p. 259).

Torrey also distinguishes between supportive psychotherapy and "insight-oriented psychotherapy" -the uncovering and exploration of unconscious conflicts. He notes that "insight-oriented psychotherapy is of no value for schizophrenia" (p. 220), which does not mean that the person with schizophrenia, as any other person, cannot benefit from understanding himself or herself better.

Depending upon the severity of the symptoms, supportive therapy may begin with a healthcare professional helping the individual to recall the events and emotions that occurred before the acute episode, so that he or she may be able to watch for and recognize approaching signs of trouble.

In all situations, supportive therapy involves the teaching of such life skills as managing medication, learning to socialize, handling finances, and getting a job. Ideally, in-patient programs should be linked as much as possible with appropriate community-based programs, to provide a continuing pattern of care.

Other Forms of Treatment

Electro-Convulsive Therapy (ECT)

Over the years, a considerable amount of controversy has surrounded ECT. Since its introduction in 1938, this form of treatment has undergone many refinements. Today, the patient is put to sleep and given a muscular relaxant. A small amount of electric current is then applied to the patient's temples. This produces a seizure. (Andreasen, The Broken Brain, p. 264).

ECT has proven highly beneficial in the treatment of depression. It is also sometimes used with patients in depressive episodes of bipolar illness (manic depression). Although it does not appear to be especially helpful with schizophrenia, it is occasionally given to patients who present serious safety risks and do not respond to medication. In 1985, the report of the Electro-Convulsive Therapy Committee, an interdisciplinary committee appointed under the Ministry of Health Act in Ontario, recommended that this form of treatment continue to be available for those who freely choose it, but that its use should be surrounded by special safeguards.

Nutritional Treatment

This form of treatment has arisen out of an early theory put forward by Drs. H. Osmond and A. Hoffer that a lack of Vitamin B could be the cause of schizophrenia. The theory they developed became known as the megavitamin theory, and treatment consisted of massive doses of niacin (Vitamin B3). Several attempts were made by other physicians to achieve the results that Osmond and Hoffer claimed (notably one by Dr. E. Heinz Lehmann at Montreal 's Douglas Hospital) but all failed. Nonetheless, this school of thought continues to persist and has evolved into a school of orthomolecular psychiatry. (Torrey, Surviving Schizophrenia, revised edition, pp. 148-149).

This form of treatment, where it is practised, usually includes the use of neuroleptic medication together with other vitamins and niacin. There are other nutritional theories about the cause of schizophrenia, but these have not been scientifically proven. However, adequate nutrition, fitness programs, relaxation programs, massage, art and dance therapy and skill acquisition can all contribute to general well-being and indirectly, to improvement.

Planning For Discharge

When your relative is in the hospital, make sure the staff are aware that you would welcome assistance in planning for what should happen when your relative is released from the hospital. Families suggest that a letter to the appropriate hospital personnel is better than telephoning (letters don't go away). An example is:

Thank you for the care you are giving my son, ________. (If you can, give a specific example of help that has been particularly important to him.) Now that his discharge is approaching, I'd like to meet with you to learn about and discuss the options available for him

Families also suggest that you have a note put on your relative's file to remind staff to alert you about approaching discharge. Hospitals are busy places, and staff can forget to keep you informed. Some families have said that they arrived at the hospital and were told, "Oh, by the way, your son is being discharged tomorrow."

In most provinces or territories, a social worker will have been assigned to your relative during the hospital stay. This person can advise you and your relative about the social services and community programs available upon discharge. He or she can also help to decide whether it is best for your relative to return home, or if alternative housing should be sought. Families also suggest it could be important to involve family members, including brothers or sisters

The Housing Issue

One of the most important issues facing families at the time of discharge is the question ofhousing. If your relative does not return home with you (and unless your relative is under-age, no-one has the right to insist on this), there are a number of options, such as a group home, a boarding house, an apartment, a room, or shared accommodations. Group homes may vary considerably in the degree of support they offer. Supervision may range from 24 hours a day to one person dropping in periodically. There may or may not be some in-house counselling or life skills training. Rules and policy may vary considerably. It is obviously necessary to know precisely what is offered before you and your relative can make a decision whether a particular group home is "right" for him or her. Boarding houses and shared accommodation typically offer little supervision, and housing in the form of an apartment or flat would require an ability on the part of your relative to function well in an independent situation. Initially, a considerable degree of family support would be advisable.

Because there are usually waiting lists for supportive housing such as group homes, you should place your relative's name on a list as soon as possible, once a decision satisfactory to him or her has been reached.

The decision about housing can often be emotional. Contributing families have offered several guidelines to help make a choice.

In general, at-home arrangements seem to work best under the following circumstances:

• your relative functions at a fairly high level, has friendships, and is involved in activities outside the house;

• if there are young children, their lives are not negatively affected;

• the interaction among family members is relaxed, and

• your relative intends to take advantage of available support services.

In general, at-home arrangements are not appropriate in the following circumstances:

• the main support person is single, ill, or elderly;

• the person with schizophrenia is so seriously ill that there is little or no chance to lead a normal family life;

• children become frightened and resentful, and feel as if they were living in a hospital;

• marital relationships deteriorate;

• most family events and concerns revolve around the person with schizophrenia, and

• no support services are used, or services are not available. (Walsh, Schizophrenia, pp. 109-110).

If you and your relative decide that he or she will live at home, the family as a group should have interviews with the therapist to clarify treatment issues. You should keep a record of how the situation works and how other family members are affected. This will give you valuable back-up material should you and your relative decide that a different housing environment is needed.

Families often feel very guilty if they have made the decision not to have their relative live at home; this appears to be especially true for women. If this is your experience, consider what one woman had to say: "A break should be made at some point, and often it is easier for your relative to adjust to the transition to a group home, boarding home, or whatever, while you are still available to give support and to encourage the use of community resources. Otherwise, your relative may have to make this adjustment without your help." (For more information on housing, please see Returning Home: The Goal of Independent Living, below).

Out-patient Programs

At discharge time, many hospitals will release their patients to a day program (where available). Such programs may include psychotherapy sessions, skills training, family education, physical activities and occupational therapy. In choosing any program, the wishes and preferences of the patient are vital to successful participation. The family's role should be one of support rather than direction. Such programs give the ill individual a routine to follow, and the doctor a chance to monitor progress. Help should also be available from the hospital with respect to government welfare and disability insurance programs.

Families warn that follow-up programs are very inconsistent across the country and non-existent in some regions. You should be able to obtain a list of support services, rehabilitation programs and self-help groups from the hospital, or by contacting your nearest chapter of SSOC or the Canadian Mental Health Association.

Returning Home: The Goal Of Independent Living

Family members have a number of concerns about what will happen when a relative with schizophrenia returns home after discharge from the hospital. They need to know how to behave toward their relative, what to say, or what expectations are realistic. Families who contributed to this handbook recommend that you should aim at helping your relative to become as independent as possible, consistent with the extent of the disability. Your relative's ability to do so will depend a great deal upon what he or she was like before becoming ill. The age of onset of the illness may also be a factor in how your relative copes now. Normally, the more skills and social development acquired before the illness, the greater the person's ability to function.

The process of helping your relative move toward greater independence really starts upon discharge from the hospital. Recognize that it will involve much trial and error. Families who have been through this experience urge you to keep the process in perspective in schizophrenia as with any other major illness - heart disease, cancer, diabetes - where the ill individual and the family must learn to cope with new and demanding circumstances. For the discharged person, diet, exercise, work and social obligations will represent a considerable challenge. Taking medication regularly and attending therapy sessions may need to become part of the person's lifestyle for the first time. Other family members will need to learn the most effective ways of speaking to and behaving toward your relatives.

One of the first things you should do before your relative comes home is to think about safety precautions. Although you may be hopeful of a permanent or long-term remission, this is not the experience of the majority of patients. If your relative is disoriented, depressed, or begins to talk of suicide, you need to be aware of the potential dangers of matches, drugs, poisons, sharp objects and so on. Many patients are heavy smokers. You should also decide ahead of time what sort of "house" rules you will need with regard to smoking. If a relative has shown signs of aggression or violence, it may be wise to consider putting locks on some doors. You may want to leave your car locked with the keys in a safe place. Explain the risks involved of driving when tired or sleepy from medication.

At an early stage of your relative's return home, it is advisable to discuss frankly the risks of drugs and alcohol and the question of sex. The approach you take should be consistent with the degree of your relative's maturity. You may wish to consult your relative's therapist about the best way to do this.

People with schizophrenia may be highly vulnerable to the temptations of the street. They need to be made fully aware that the use of drugs or alcohol can impair the effectiveness of their neuroleptic medication. Taken in excess, they may create difficult treatment problems for the attending physician. Heavy consumption of street drugs or alcohol may create symptoms of psychosis difficult to distinguish from those of a psychotic episode caused by schizophrenia. Street drugs taken by injection add an extra danger due to the possibility of infection by the virus that causes AIDS (Acquired Immunodeficiency Syndrome).

Sexual activity may also develop into a problem area for your relative. Although the medication tends to lower the sex drive, this can usually be dealt with by reducing dosages. The vulnerability of young people, because of loneliness, their need for social acceptance, their willingness to trust strangers too easily, and pressure from peers, makes them easy targets for sexual victimization. They are often not aware of the risks they are running. This is doubly so for the young person with schizophrenia. Starved for friendship, they may be driven by desperation into relationships and situations in which they are exposed to infection by AIDS or other sexually transmitted diseases. For women, there is the added risk of an unwanted pregnancy.

Patients of both sexes should be instructed in the use of condoms and birth control methods should they decide to participate in sexual intercourse. Condoms can be obtained without prescription. For women who are on the pill and who think this is enough protection, the risks of such possible infection as gonorrhea or AIDS should be clearly explained.

If possible, families suggest that an ill member should be encouraged to bring friends home. If your daughter is beginning to become friendly with a man, you might tell her that you would like to meet him and would she ask him to come for a meal. You could also advise her to meet her new friend only in public places until she gets to know him well. Explain the problems that could arise from going to a man's house alone.

Persons with schizophrenia are often more at ease with children than with adults. Although this does not indicate a sexual interest, it can, especially with men and children, lead to potential concerns. It is behaviour that should be carefully monitored. Young girls with schizophrenia are vulnerable to sexual advances from adults. For men in the younger age groups, homosexual approaches may occur and may be experienced as frightening. In large cities, such approaches are not uncommon, and reassurance is needed that nothing in your relative's behaviour or appearance has triggered the approach.

Negligence in dress may be a problem. Open trousers may look like exposure, but it is not necessarily intended. It may simply be the result of unconscious carelessness. Some persons with schizophrenia may masturbate in public (see Embarrassing Behaviour).

It is important to discuss sexual matters with your relative in a way that takes account of today's standards and the concerns of the younger generation. Although sexual morality may loom large for some families, safety issues need to be a first priority. Those with schizophrenia need protection from violence, assault, unwanted pregnancy, unwanted attention, unlawful behaviour, transmission of disease, undue naivete and heartbreak.

Suggestions for Coping

The following suggestions may help you cope during this early stage.

• Speak with a slow-paced and low-toned voice. Use short, simple sentences to avoid confusion. If necessary, repeat statements and questions using the same words.

• Explain clearly what you are doing, and why you are doing it. For example, "I am putting your clean clothes in your closet. You can choose which clothes you want to wear today."

• Establish a structured and regular daily routine. Be predictable. Be consistent. Do not say you will do something and then change your mind.

• Offer praise continually. If your relative combs his or her hair after three days of not doing so, comment on how attractive he or she looks.

• Avoid over-stimulation. Reduce stress and tension. For example, eating meals with the family may be too overwhelming at first.

• Persuade, but never force, your relative to take his or her medication and to keep all medical appointments.

With time, your relative may show signs of being able to handle more responsibility. Although you should always keep in mind the above ideas for reducing stress, families have compiledother suggestions for the time after the initial period of adjustment.

• Discuss with your relative how he or she feels about doing more things.

• Begin with mastery of self-care tasks - personal hygiene, getting dressed, eating scheduled meals.

• Assign household responsibilities that are within your relative's abilities. Watch to see if your relative prefers to work alone or with others. For example, he or she may like to wash dishes, but may not be able to handle the "help" of someone else drying.

• Encourage, but never push, your relative to be part of social gatherings if appropriate. One or two relatives or friends over for dinner may be manageable, whereas an all-day gathering of the clan - for example, a wedding - may cause frustration.

• Discuss plans with your relative for an outing once a week. A drive and a walk in the country may be fun, whereas a trip to the city may be too noisy and tension filled. If your relative enjoys coffee and doughnuts, plan a break around going to the donut shop, rather than a restaurant where there may be a more formal atmosphere.

• Do not be too inquisitive. Do not always ask your relative, "What are you thinking about? Why are you doing that?" Talk simply about outside events: "Did you hear about the new movie starring...."

• Understand that although it may be very difficult for your relative to have a conversation with you, he or she may be able to enjoy your company in other ways. Consider watching television, listening to music, or playing cards. Talk about childhood events. Your relative may appreciate being read to.

• Avoid constant, petty criticism. Identify the major behaviours and learn to deal with them in an honest, direct manner. For example, in many families, the lack of personal hygiene is a source of great irritation. But saying things like, "Why can't you wash?" or "You smell awful," does not seem to have much effect in solving the problem. It is better to present the problem as your own. "I do not like the way you smell. I have a problem with the fact that you do not shower regularly. How can we work out an agreement that you will shower daily?"

• Be forgetful. Say something like, "I forgot the milk. Can you get it please'?"

• Encourage your relative to take responsibility. For example, leave instructions about starting dinner in case you are late getting home that night. And then be late.

• Teach your relative how to deal with stress in a socially acceptable manner. For example, if he or she is in a public place and begins to feel panicky, he or she can go to a washroom until the feeling has passed.

• Remember that family members are often the only friends your relative has. So try to be a friend; talk as a friend would. "I'd really like to see this movie. Would you come with me tonight?"

• If you are a member of a church, encourage someone from the congregation to befriend your relative. (Look for someone your relative's age.)

• Always try to put yourself in your relative's place. Respect his or her feelings. Saying "Don't be silly. There's nothing to be afraid of," will get you nowhere. Allow your relative to feel frightened by saying something like, "It's all right if you feel afraid. Just sit here by me for awhile."

• Respect your relative's concerns about the illness. Often, those who have schizophrenia ask their families not to "go public" - that is, not to become a public speaker or to give interviews on behalf of their support group. Although some families feel that they have a lot to offer in terms of helping others, they have decided for now to abide by their relatives' wishes. Others, although fully sympathetic with their relative, have decided otherwise.

With time, your relative will begin to feel more confident and secure about the ability to do things. Some health care professionals have noted that it is around this period that new problems can emerge, particularly if the family isn't prepared to grow with their relative. In other words, the family may have developed a routine of treating the relative like a sick person or like a child, and it is the family that begins to fall behind in the recovery process. Your relative may begin to have reasonable expectations about what he or she can do, things like socializing, returning to school or becoming employed. This can cause friction in families if they do not constantly monitor the progress of the person's schizophrenia and re-evaluate goals. If a social work service is available, do all that you can to ensure that your relative is visited by a social worker. Work with this person, your doctor and your support group, so that you can help your relative make informed and realistic choices about the future.

In many cases, the most important goal for a person with schizophrenia, particularly a son or a daughter, is to become sufficiently independent to move out of the family home, although the importance of this goal may vary because of ethnic backgrounds and family traditions. Those families who believe that it is a critical issue give four reasons for their point of view. First, the person with schizophrenia may be able to fulfill his or her potential better by leaving home. Second, as the supportive member or members age, become ill, or die, the relative may be left alone with few survival skills. Third, living with someone with schizophrenia can be very demanding. and other family members may have put their own lives "on hold" to support their relative. Fourth, both you and your relative may have too much "emotional baggage," such as childhood dreams and expectations, transferred blame and resented authority, for the person to be anything but tense and frustrated living at home.

If you and your son or daughter have agreed that moving away is desirable, this may be done best around the age that he or she normally would have left, that is, the early to mid-20s. Too many parents avoid the issue until they have to say, "I can't stand this anymore. You have to leave." The result is guilt and resentment at the changes the illness has brought upon the family.

The process of becoming independent is gradual. As well as the ideas listed above, families suggest that at an appropriate time, you begin to say something like, "If you decide to live on your own..." as often as possible. Gradually, change this to, "When you decide to live on your own...." For example: "If you decide to live on your own, you'll need to know how to do your own laundry." And then, "When you decide to live on your own, you'll be glad you learned how to use the laundromat."

Families suggest that at some point you and your relative make a commitment about when the move will occur. Work together (with the social worker, if there is one) to set a date that will give you both plenty of time to seek and approve accommodation. For example, you may come to an agreement that in six months, on May 1, John will be ready to live on his own, in whatever form of housing he and you have decided will be best.

Once the move has been completed, there may be some resentment on the part of your relative. It is very important to help him or her not to feel abandoned by the family. You will have to work hard over the first few weeks to reinforce the idea of the move as a positive step.

• Be a friend. Call your relative and make dates to go places and do things.

• Encourage self-esteem by offering praise and support.

• Respect your relative's wishes and concerns as much as possible.

As well as emotional support, you may have to be involved in such things as housework, shopping. cooking and management of finances. The amount of daily assistance your relative needs will, of course, depend on the condition of his or her illness. Families stress the importance of working with your relative as you do these tasks.

Allowing for your family's background and traditions, the relationship should become less intense over time. At first your relative may wish to come back every weekend. Contributing families agree that this is fine for the first few weeks or months. Then, however, you should begin to pick the occasional weekend when he or she may not return home. You should have a valid reason, such as "We'll be away that weekend." Gradually decrease visits to one or two weekends a month. You may also find that at first, your relative will phone home constantly, often three or four times a day. If this persists, the use of an answering machine may be advisable. You can then return calls as you deem appropriate. As time passes, your relative should become more confident of his or her capabilities and the number of phone calls will settle into a normal pattern.

Social And Vocational Rehabilitation

Opportunities to participate in rehabilitation programs vary a great deal across Canada. Ideally, in-patient and out-patient treatment should be linked together in one continuous process. In some situations, a caseworker is assigned who has the prime responsibility of following the patient's progress in the community and providing advice and assistance when needed.

Most provinces and territories now have their mental health services under review with the aim of achieving more effective treatment and greater control over rising costs. The underlying premise in such approaches is that many services can be provided more efficiently and effectively in the community than in the hospital.

Hopefully, prior to discharge from the hospital, your relative will already have taken part in a number of programs designed to ease the return to life in the community. These may have included social and vocational counselling and, dependent on individual needs, plans for some academic skills training or for social-recreational activity.

Patients returning to the community should be assessed to determine what stage they are at with respect to independent living and what supports they may need.

If this is done by a health care professional, families should seek to provide some input. Should professional help not be available, however, families should help their relative make this kind of assessment. Many elements may be involved, such as: what skills did the person have before hospitalization? Have these been strengthened by in-patient programs? Has he or she had previous employment experience? What opportunities are available? Are there sheltered workshop programs that would offer a useful intermediate step? Should he or she consider a volunteer job as a start? If the person is receiving welfare benefits, how will these be affected?

The most basic question is whether your relative is really ready for a job, even the simplest kind. Much will depend on his or her level of social skills and confidence. Parents should not push. Let the initiative come from the person, but be there to help and provide encouragement.

An excellent brochure, Vocational Rehabilitation, put out by the Clarke Institute of Psychiatry, looks at this issue and others for patients involved in looking for work. Authors Hana Scholz and Terry Krupa have written it specifically for "people recovering from psychiatric illness." Employment and Immigration Canada offers training programs and other employment-related programs that may be helpful to your relative. Your provincial or territorial government also provides vocational rehabilitation services.

Some communities have non-profit organizations modelled on the Fountain House Project in New York. This type of operation is called a "club-house program. " It has been designed specifically for people with psychiatric disorders who may join "the club" for a modest fee. The club-house is the focus of services provided, such as meals at reasonable prices, social and recreational activities, and some sheltered employment. Most such organizations develop good working relations with local employers to arrange jobs for those able to function at this level. They may also provide some housing accommodation at different levels of support. Many families have found this approach excellent for a relative who is well enough to be able to participate.

Those who have gone through their relative's move out of the family home know that you will have many worries at this time. Keep in mind that a family support group can supply you with all sorts of ideas and advice about handling the practical concerns of day-to-day living that you and your relative will face.

What Do I Do About ...?

Many families said that when their relative was discharged from the hospital, they hoped the major problems were all behind them and that their relative was well on the road to recovery. They believed that with proper medication and therapy, their relative would just keep getting better and better until "cured." It came as a surprise to many that there were now new problems to face. Families who have struggled through these problem areas believe that it is best to be prepared.

Refusal to Take Medication

This is one of the most frustrating problems. It may be hard to understand why someone with schizophrenia would refuse to take medication when the necessity of doing so is so obvious to everyone else. Families have found that there are five main reasons why someone might refuse medication.

• Your relative may lack insight about the illness. Not believing that he or she is ill, he or she sees no reason to take medication. Or, some think that it is the medication that causes the illness. If the illness involves paranoia, your relative may view the medication as part of a plot to prevent him or her from functioning.

• Your relative may be suffering from unpleasant side effects as a result of the medication and believe that it causes more problems than it solves.

• Your relative may be on a complicated medication scheme that involves taking several pills a day. He or she may find the regimen too confusing, and may resent the constant reminders of illness.

• Your relative may feel so well that he or she either forgets to take the medication, or thinks that it is not necessary any more.

• Your relative may welcome the return of certain symptoms such as voices that say nice things and make him or her feel special.

People with schizophrenia need to take prescribed medication, and the following is a list of ideas and guidelines to help you with this difficult problem.

• Know that the initial medication dose must be continuously monitored. Therefore, you should always listen to your relative's complaints about side effects. Do your best to empathize with any distress about medications.

• Know that "bad" symptoms (usually the positive) will not reappear immediately upon discontinuation of medication. Anti-psychotic drugs stay in the system for six weeks to three months. This "grace" period gives you some time to deal with the problem. After three months, however, getting back to a maintenance dosage may mean "starting over" at a higher than maintenance level.

• Explain to your relative that he or she may end up back in the hospital if medication is not taken (this should not be a threat). Some will not accept warnings, and still others may not mind returning to the hospital.

• If other people in your family are on medication, turn pill taking into a ritual. Everyone takes his or her medication at the same time (even if it is a vitamin pill).

• It is easier to take one pill a day than six. Talk to the doctor about the form in which your relative is receiving medication.

• For people who keep forgetting to take oral medication, the use of a weekly pill box can be an effective tool.

• Never sneak pills into food. If paranoia exists, this will increase it. Trust will never be built up.

• More people go off oral medication than injectable medication. With injectable, you are sure the person is getting it. He or she can't spit it out, hide it under the tongue, etc. Discuss the pros and cons of switching medications with the doctor. (Health care professionals note that there is a "down" side to injections: possible feelings of humiliation, loss of control, and the potential for build-up of medication over time.)

• Injectable medication is given once a week or once every few weeks, depending on the type of neuroleptic. Consider arranging a "treat" built around going for the medication - seeing a movie, going for lunch, etc. Let your relative know that you are proud of the way in which he or she is handling the need for medication.

• Do your best to be calm and reasonable about getting your relative to take medication. If you press too hard, you may make it more difficult for your relative to move to greater independence. A period of learning through experience may be necessary.

Signs of Relapse

With schizophrenia, relapse refers to a return of acute symptoms. As Jeffries, Plummer, Seeman and Thornton state, "Schizophrenia, for the most part, is a 'relapsing' condition, and so it makes sense to expect a return of symptoms and not to be caught off guard." (Living and Working with Schizophrenia, p. 72).

Families have noted that the behaviours that indicate a relapse are usually the same as those that occurred prior to the first episode. Some of the more common behaviours are - sleeplessness, increased social withdrawal, deterioration of personal hygiene, thought and speech disorder and signs of visual and auditory hallucinations (e.g. listening excessively to loud music, usually with headphones, perhaps in an attempt to drown out the voices): Should you become aware of any of these behaviours, call your relative's doctor immediately.

Relapse can occur for a number of reasons, as well as for no apparent reason. Sometimes the ill person has stopped taking medication for a long enough period of time for acute symptoms to reappear. Sometimes the dosage of medication is not high enough to prevent the return of acute symptoms. Perhaps the person afflicted is not receiving enough support, either at home or from community services. Perhaps the individual has recently experienced some severe mental stress - the death of a loved one, the loss of a job, the move to a new place to live. Sometimes the individual is simply physically exhausted, or is using alcohol or street drugs in an effort to feel "better" briefly. Sometimes the cause may be something that can be dealt with quite easily. For example, medication can be increased, a brief hospital stay can be arranged, more support can be found.

Health care professionals warn that relapse can occur during a period called "self-cure." (This also occurs in other illnesses, such as diabetes and arthritis.) Usually, such an attempt occurs three to five years after a diagnosis of schizophrenia has been made. It is a time when the ill individual, tired of the disease, decides to take matters into his or her own hands. He or she may-stop taking prescribed medication, may join a cult, may try to "exorcise" the illness out of the body, may do strenuous exercise to get rid of it, may consume vast quantities of vitamins or herbal medicines, and so on.

A relapse is very disappointing, but as one mother said, "People with schizophrenia are not much different from people suffering any other disease, especially if you are dealing with young people. They won't follow proper health care or eat nutritiously; they forget medication; they skip medical appointments; they may have a 'who are you to tell me' attitude."

Many families have found that they can come to an agreement with their relative, when well, about what to do when facing the possibility of relapse. This is discussed with the individual and his or her doctor. For example, one family made it clear to their son, who had behaved extremely aggressively in the beginning, that if he ever threatened violence or damaged property again he would have to leave home. He could go to the hospital in a taxi, with the police, or with his parents, but he would not be permitted to remain at home any more. They told him that because he was of age, they would even charge him with trespassing and call the police should he break his agreement.

Other families, dealing with someone with less aggressive tendencies, found that it was sufficient to tell the individual that he or she could continue to live at home as long as he or she agreed to get help, should relapse occur.

Once again, families stressed that they have found that knowing the course of the illness in their relative is most important in taking steps to avoid a relapse. Many of the people who have schizophrenia and who have come to terms with it have learned to watch for signs of relapse and to call their doctors. Some have even learned to phone the police when they feel themselves losing control. You may find it helpful to discuss the advantages of developing a "signs of relapse" list and a "strategies" list with your relative, as some do to help themselves get through the bad times.

Embarrassing Behaviour

Families suggest that embarrassing behaviour can be dealt with in two ways: clearly outline and reach an agreement with your relative about what behaviour will and will not be tolerated, and examine your own attitude about why you are allowing yourself to be embarrassed.

Families have found that coming to an agreement about behaviour is sometimes a lot easier than people think. One woman related the following story: "In monitoring my daughter's behaviour, I often tried to find just the 'right' way of dealing with it. I wanted to correct in a positive way so that her feelings wouldn't be hurt. As a result, sometimes I did nothing, because I couldn't figure out what to do. For example, one day my son told me that whenever he had friends over, his sister would join them and do embarrassing things. Could I please do something about it? I spent days trying to decide how to handle this situation wisely. Then my son told me he had handled it himself. He simply told his sister, 'When I have friends over, I want to be alone with them.' My son was direct and honest and no feelings were hurt."

Many families agree that the direct approach can sometimes work well. Saying something like "Stop that," or "Knock it off," or "That's inappropriate behaviour," changed the behaviour. This may have to be repeated. Families say that you have to realize that sometimes your relative is not aware of acting in an inappropriate manner, and therefore a simple statement from you will serve the purpose. For example: "Please don 't smoke in here, Mrs. Jones suffers from asthma."

Families may find themselves "bargaining" for suitable behaviour, but they should weigh the risks carefully before doing so: "If you do this, or don't do that, then we'll go out for dinner, buy that new record, go for a drive," and so on. As always, your ability to achieve results will depend upon a realistic assessment and acceptance of the problem. Remember that some behaviours will take longer than others to correct. Much patience is needed.

Sometimes no amount of intervention works, and embarrassing behaviour will take place on the spur of the moment. This is when families stress that you need to examine your own attitude. Why are you allowing yourself to be embarrassed by someone you know is ill with a disease that interferes with brain functioning? The answer, of course, as with all embarrassing behaviour, is that we assume that everyone is looking at us, and thinking that there is something wrong with us, not with the person who is behaving inappropriately. This is true whether or not the person is a spouse who has had too much to drink at a party, a two-year-old throwing a tantrum, or a teenager with schizophrenia dancing naked on the lawn. The problem is that when we allow our self-esteem to suffer because of someone else's behaviour, we can no longer deal effectively with that behaviour. Mixed with this may be genuine concern that the person is losing the esteem of others - "There goes John's chance of making some friends."

Families who have worked through this problem of attitude feel that if necessary, they are now able to take a responsible role in assisting their relative - without taking blame for embarrassing behaviour that might occur. They have undergone a shift in outlook and realize that it is the "onlooker" who may have an attitude problem. Often, they now feel saddened, rather than embarrassed, as they watch their relative struggling to adapt to the world of "normal" behaviour. They suggest one keep in mind that if the family member who is suffering the most is not the person who is ill, something is wrong and you should seek professional help.

Here are some suggestions for dealing with your relative's sudden or impulsive actions.

• Take immediate steps to stop or change the behaviour.

• Be firm, sometimes angry, but never abusive with your relative.

• Be polite to bystanders. Assume that they are understanding and tolerant.

• If necessary, apologize and explain the situation to anyone involved in the incident.

• If warranted, offer to pay for damages, clean up the mess, explain to whomever, and so on.

• Keep your sense of humour.

• Share the story with someone you know will see its "funny" side.

Disappearance

This can be a difficult problem for families. Frequently, persons with schizophrenia decide that somehow a new location will provide an answer to the problems that the illness has imposed on them -- or they may be directed by "voices" to leave. They simply take off. If their relative is a minor, the family should contact the Missing Persons Bureau of their local police department. Remember that if your relative is legally of age the police may have no authority to return your relative or inform you of his or her actions or whereabouts.

It may happen that your relative leaves the hospital before treatment has been completed. If he or she is an involuntary patient, the hospital is responsible for notifying the police to look for and return the patient to the hospital. In some jurisdictions, if the police have been unable to find a missing involuntary patient within a certain period, the hospital then has the right to discharge the person.

A voluntary patient of majority age has the right to discharge him or herself at any time. The attending physician (or physicians if two signatures are required) may decide to change the person's status from voluntary to involuntary, if the person is sufficiently ill to meet the requirements for doing so. The patient will not then be allowed voluntary discharge. This option is also open to the attending physician(s) if the person has simply walked away. The police can then be asked to look for the individual.

Often, relatives may simply have to wait until the patient surfaces. This may happen when the person has been picked up as a vagrant, has gone to a hostel, or has been taken to a hospital for help. Then, (unless the police have been involved) you may make arrangements for the person to return home or consider other options. For example, if the person is under treatment when located and this appears to be working well, consider leaving him or her until treatment has been completed.

What are the things one can do?

• If your relative says anything about places he or she is interested in or would like to see or visit sometime, jot it down. It could be a useful clue as to where to look should your relative disappear.

• If your relative decides to travel, try to think of some effective way of staying in touch. For example, one father arranged with his son that he would keep his son's money for him. Then, whenever the son let him know he needed some funds, he would send him some-not too much. He found this to be an effective way of maintaining contact.

• If you have lost touch with your relative for a period of time, it is wise not to wait too long before you begin checking. Although the police may have no basis for active involvement, it is worth speaking to Missing Persons and telling them your story. They may be able to help by doing some checking, or with some practical advice.

• If you have some idea where your relative may have gone, get in touch with your local SSOC chapter or the national office in Toronto. They may be able to help you through a provincial association or chapter in the area where you think your relative may be. If travel to the United States is a possibility, contact the National Alliance for the Mentally Ill (NAMI) directly or through SSOC.

• Check with local voluntary agencies such as the Salvation Army. Sometimes a missing relative will show up in one of their hostels. Also your church may be able to help, particularly if your relative took a keen interest in religion.

• If you decide to use the services of a firm of private investigators, determine if the firm you select has strong connections with the police. (They may be able to get help from this source which you wouldn't.) Discuss with the firm a reasonable limit on its expenses, including the fee, to undertake a realistic search on your behalf.

Risk of Suicide

With schizophrenia the possibility of suicide is an ever-present fear. The illness involves depression, delusions and sometimes command hallucinations that may tell the person to attempt suicide. There is a tendency to act impulsively. Torrey noted that an estimated 10 percent of all patients with schizophrenia kill themselves (Surviving Schizophrenia, revised edition, p. 123). As in the general population, men are more likely to complete suicide, while women attempt it more often. Suicide, when it happens, occurs most commonly during the first five years of illness. After this, the risk drops considerably. Torrey suggests that "Those at highest risk have a remitting and lapsing course, good insight (i.e., they know they are sick), have a poor response to medication, are socially isolated, hopeless about the future, and have a gross discrepancy between their earlier achievements and their current level of function." (Surviving Schizophrenia, revised edition, p. 124).

Sometimes a suicide is methodically planned and deliberately committed. At other times, a suicide may be accidental - that is, the victim is acting out a hallucination or delusion when in a psychotic state. Families caution that in either of the above situations, there are some preventive measures you can take, although you can never guard completely against the possibility of suicide.

Here is a list of behaviours that may indicate suicide is being contemplated.

• Your relative talks about suicide: what it would be like to die, how to go about it, comments such as "When I'm gone...," and so on.

• Your relative is concerned about having a will and about the distribution of possessions. He or she begins giving away treasured possessions.

• Your relative expresses feelings of worthlessness: "I'm no good to anybody."

• Your relative shows signs of hopelessness about the future: "What's the use?"

• Your relative is showing signs of hearing voices or seeing visions that may be instructing him or her to do something dangerous.

All talk of suicide or self-harm must be taken seriously. It is not true that someone who talks about suicide rarely does it. If your relative begins to talk about suicide, or inflict wounds - no matter how superficial - upon him or herself, it is vital that you reach your relative's therapist immediately. If this isn't possible, take your relative to the hospital where he or she was previously admitted, or to the nearest emergency department. In many communities, there is a suicide phone "hotline" available.

If suicide is attempted, and you are the one who discovers your relative:

• Phone 911 immediately. (If this service is not available in your area, call the emergency number of the nearest hospital.)

• If appropriate, and if you are familiar with it, perform CPR (cardiopulmonary resuscitation).

• Phone someone to come and be with you, whether it is at the hospital as you wait for news, or at home to take care of you. Although it is perhaps not likely, be prepared for the possibility that the hospital may not admit your relative, even after a suicide attempt.

• Get in contact with your local support group, if there is one, and let them know what has happened.

• Do not try to handle the crisis alone.

• Do not hesitate to contact other support groups that deal specifically with grief and bereavement.

Often, when someone commits suicide, the family members, if they belong, stop coming to support group meetings. The relatives of suicide victims may believe that their presence is too depressing for other members of the group. Families in support groups urge these people to keep attending meetings. As one father stated, "When a relative develops schizophrenia, the support group becomes your family, because so often you lose family and friends. Now, when you've lost your relative, you need your new family more than ever."

Trouble with the Law

Unfortunately, a significant number of people with schizophrenia find themselves in trouble with the law. Offences may range from shoplifting, mischief, assault or ordering a meal at a restaurant and refusing to pay for it to much more serious charges such as aggravated assault, arson or murder.

Should your relative be charged, try to secure the services of a lawyer who is familiar with the problems of schizophrenia. You should be able to determine this by questioning the lawyer about his or her knowledge of schizophrenia and its impact on the individual. In the course of their law practices, most criminal lawyers have defended clients with psychiatric disabilities and therefore have some knowledge of schizophrenia. As well, most criminal lawyers do accept clients supported by legal aid.

Families often think that the legal defence for someone with schizophrenia charged with an indictable offence should be based on a plea of "not guilty by reason of insanity." This requires that the person be assessed under subsection 16 (2) of the Criminal Code as having "disease of the mind to the extent that renders the person incapable of appreciating the nature and quality of an act or omission or of knowing if an act or omission is wrong." This test is a legal one designed to determine the degree to which the individual is to blame. This is not an assessment of the degree to which the person may be mentally ill.

If the plea is upheld, the result will take the form of a Lieutenant Governor's Warrant under which the person will be held indefinitely in the forensic unit of a psychiatric centre or discharged "either absolutely or subject to such conditions as he (the Lieutenant Governor) prescribes" in accordance with the provisions of section 614 of the Criminal Code.

The Criminal Code provides for the establishment of an Advisory Review Board in each province. These Boards are required to make annual reviews of all those held under Lieutenant Governors' Warrants in their respective provinces.

A criminal lawyer will always counsel against such a plea in cases where the charge is minor, because a finding of "not guilty by reason of insanity" is a potential life sentence.

The defence lawyer and the lawyer for the prosecution may sometimes agree on a joint submission as to disposition of the case and explain the circumstances of the person on charge and the illness to the judge. The judge may then choose to give a suspended sentence, with probation, and require that the person receive treatment and take any prescribed medication.

A major concern with Lieutenant Governors' Warrants is the potential for a lifetime of confinement. Those held in custody may be released only by the Advisory Review Board, either absolutely or under such terms and conditions as the Board may establish. These provisions in the Criminal Code were designed to recognize the need to protect the public in situations where the past behaviour of the individual was extremely serious and future behaviour is unpredictable.

One father reported that the Lieutenant Governor's Warrant imposed on his son has at least had a positive effect in restraining his son's behaviour. The young man understands that if he does not conduct himself in a law-abiding manner, he runs the risk of being sent away again to the forensic unit of a psychiatric centre for an indefinite period. Make no mistake, however--it is still indefinite confinement. It should only be viewed as a last resort, where the individual's behaviors a serious and ongoing danger to others. It is by no means the answer to disruptive behaviour short of that level of seriousness.

Money Problems

Many people with schizophrenia have trouble in handling money matters. This can present families with some awkward situations. Some of these may be beyond an immediate or a ready solution.

Normally, where a patient is entitled, he or she will receive help at the hospital to complete arrangements for welfare benefits. In this situation, your relative will then receive a monthly income that is under his or her complete control. Most will need a good deal of help in learning how to budget properly to meet such basic items as rent or board, food and transportation. They need to know that their spending over and above regular monthly needs should not exceed what is left.

For many this is difficult, at least at the start. When a substantial sum is available (for example, on receipt of a welfare cheque), many tend to "blow" all or a large part on impulse spending, often foolishly, or to give their money away to friends -- even to strangers. Families find that they are then called upon to make up the amount needed to cover neglected basic living expenses. Behaviour of this sort, although not surprising for someone with few chances to enjoy life, is disconcerting for families and requires that they exercise a good deal of patience.

For the individual, managing money well is an important step toward the achievement of greater independence. In situations where families are providing money regularly to a relative with schizophrenia, Torrey suggests that one approach is "...to link autonomy in money management to other behaviour indicating independence ... the successful performance of chores is another way that schizophrenic patients can demonstrate that they are ready for greater financial responsibility." (Surviving Schizophrenia, revised edition, p. 291). This strategy provides an incentive to the person to learn how to deal better with money matters, and is also a way for families to avoid getting into the habit of only doling out money in small amounts, when this is no longer necessary.

Support For The Family

People involved with schizophrenia note that the family, most often the primary caregiver, is under a great deal of stress every day. One woman states: "Personal stress is something that often goes unacknowledged. The sick person becomes a priority, and we forget our own needs. The day-to-day tasks involved in caring for a dependent - sudden crises, worry, financial problems, searching for community services, coping with bureaucracy, becoming an advocate, squeezing out precious moments for our other family members - depletes and robs us of our energy. Eventually we end up with stress exhaustion, and this can lead to depression, anxiety, burnout, and psychosomatic illnesses." (Elenor Smith, editor, Alberta Friends of Schizophrenics Newsletter, Nov. 1988).

Families and health care professionals caution that the strain of having a relative with schizophrenia can begin in the very early days, when that person first behaves unusually. Normally, when we see someone who is visibly handicapped - for example, using a wheelchair or white cane - we are inclined to offer that person our support. With mental illness, however, often the only way one realizes that something is wrong is to actually see someone exhibit "weird" behaviour. It is natural to be disturbed by such behaviour, and we tend to withdraw from them. When "weird" behaviour occurs within a family, the reaction is not much different, and may even be hostile. In the early days, family members may be bewildered and resentful, and often blame and criticize the ill individual. Members may blame other members of the family as their fear and frustration grow.

Families drew up the following list of negative responses that they found very common, both in the early days and in reaction to a diagnosis of schizophrenia:

• denial of the illness entirely: "This can't happen in our family."

• denial of the severity of the illness: "She's just going through a phase."

• refusal to discuss one's fears

• withdrawal from usual social functions

• shame and guilt: "Where did we go wrong?"

• feelings of isolation: "Nobody knows what I'm going through."

• bitterness: "It isn't fair. Why us?"

• blame: "You should have stayed home with the kids."

• preoccupation with moving away: "Maybe if we left the city, lived in the country."

• excessive searching for possible explanations: "Maybe we punished her too much."

• inability to think or talk about anything but the illness

• extreme ambivalence toward the ill person

• marital dissension; eventual divorce

• sibling rivalry and refusal to talk to or be with the afflicted sibling

• increased drinking or dependence upon tranquilizers

• depression

• insomnia, weight loss, anxiety

Families caution that one of the most important things to watch for is resentment in siblings. When you are spending all of your time and energy supporting and seeking help for your ill child, it is very easy to neglect other children. Families warn that you may also have to accept that a sibling may never have any feeling of affection for the ill relative. As one woman said, "My brother was several years older than me. I never had a relationship with him when he wasn't ill. When he first got sick, I was very young, and his behaviour scared me. Then, as I got older, the things he did embarrassed me. It's very hard for my parents to accept, but I don't feel any connection to this ill man." Many parents cannot understand this lack of empathy, and find that they resent their other children for not feeling the same way they do about the ill individual.

Some families believe that one way to prevent resentment is to include siblings in family discussions about the ill relative, and to ask for their support in caregiving. Parents often try to protect children by keeping the truth from them, but ignorance can be very frightening. Children should be given as much information as is appropriate for their age. One woman, whose parents always included her in the support of her brother, stated, "My brother is only one year older than me. I don't remember a time when he wasn't there. I love him dearly, and I am the only person he can really talk to about what is happening to him." One father said that now that his ill daughter is on medication and doing well, his other three daughters are willing to be supportive. In the past, they had been afraid of and embarrassed by their sister. But now the four daughters go out once a week and have created strong family ties.

Because the different relationships within a family can show signs of strain during the very early days, families of those with schizophrenia stress again the importance of joining a support group as soon as the diagnosis has been determined. Listening to others who have been through the experience will help you to acknowledge your feelings of anger, confusion, guilt, shame, and so on, and to realize that these feelings are all normal. Normal as these feelings are, however, they are painful and will grow when the family members are uninformed and unsupported. The sooner a family comes to an understanding of the illness and finds appropriate ways of relating to the ill individual, the greater chance a family has of remaining a healthy, functioning unit.

Burnout

The other reason for joining a support group early is to find ways of avoiding the burnout that so often comes with the burden of caring for someone with schizophrenia. Feelings of chronic fatigue and utter exhaustion, a lack of interest in life, a lack of self-esteem, and a loss of empathy for the person with schizophrenia are common to people who have been coping alone for a number of years. These people are the "walking wounded", and may suffer from headaches, insomnia, drug and alcohol abuse, depression, and stress-related illnesses.

Families offer the following ideas for avoiding burnout:

• Be aware of your health on a day-to-day basis. Eat nutritiously. Join an exercise club. Go for walks as often as possible. Get enough sleep. Visit your own doctor for regular check-ups. Let him or her know that you are the caregiver of a relative with schizophrenia.

• Learn about relaxation techniques.

• Schedule a break for yourself every day.

• Take regular vacations if you can afford to. Try to get a day or a night to yourself every now and then: will a friend stay overnight while you go to a hotel? (Some families, who are able to be flexible about vacations, go on holiday when a bed is available at a local group home. This sort of respite care is becoming more readily available.)

• Avoid self-blame and destructive self-criticism.

• Take a school course - give yourself a few hours when you have to concentrate on something else.

• If your relative lives away from home, don't visit more than three times a week after the initial transition. Limit phone calls.

• Try not to neglect the other relationships in your family.

• Share your grief and problems with supportive people. Be careful from whom you seek advice. (For example, misinformed people may suggest that schizophrenia is something you caused.)

• Aim for teamwork in your family.

• Recognize that successful treatment and workable after-care programs require the co-ordinated and shared efforts of several groups of caregivers.

• Realize that life must go on for you and for others in the family. This attitude may benefit your relative. He or she may be strengthened by the realization that life goes on.

• Keep on top of developments in your relative's illness that may indicate that a change of lifestyle is necessary. For example, many families have found that although their relative lived at home successfully for a number of years, at some point a change occurred that lowered the quality of life for everyone. Do not insist on keeping your relative at home if different housing is now indicated.

• Keep your religious beliefs. This may be important to your relative.

• Keep a sense of humour.

• Never lose hope.

Burnout may also be caused by a lack of acceptance on the family's part. Some people are unable to recognize the illness for what it is. The realization that your relative may never be the same again, may never get "cured," is too unbearable to contemplate. Many of these people attend support group meetings on a regular basis, insisting all the while that their wife will get better, that their son will be cured. One mother said that she devoted all of her time to her son the first year he became ill. Then it was pointed out to her that because she was a social worker, she felt that she ought to be able to help him. This mother now strongly cautions others not to impoverish themselves emotionally or financially by chasing "will-o'-the-wisp" cures that have not been scientifically substantiated.

There are those who push themselves to the limit. They never let go. They never get on with their own lives. They wear themselves out. Those with experience advise that once you let go, once you say "This is it," life becomes simpler. One father stated, "You work through fear, anger, grief, and finally come to acceptance. Acceptance is like adopting someone new - the other person is no longer there." Acceptance means that you have learned to look at your relative as he or she is now. Then there is room for hope, and you can begin to work for those things that will really make a difference in your relative's life.

Research: The Hope For Tomorrow

Less research is done on schizophrenia than on any other major disease, given both the human and the financial burden that this illness imposes.

Most research conducted until the end of the Second World War was biological, after which there was an interlude of 10 to 15 years when psychiatry based its attempts to understand and to treat mental illness on the study of human behaviour. This approach led to the development of psychoanalytic techniques. This treatment, as noted earlier, is not effective for patients with schizophrenia.

Modern research into the biological causes of the disease began with the introduction of the neuroleptic drugs in the 1950s. This brought about a change in the direction of research on schizophrenia and its possible causes from the behavioural to the neurochemical. It is now largely accepted that the symptoms of the disease arise from a failure of the chemical processes in the brain to function properly. Today, the primary thrust in research on schizophrenia is to discover the reasons for this.

Research expenditures on schizophrenia still lag far behind those on other serious illnesses. Research interest in this mental disorder has, however, increased greatly throughout the world in recent years. Scientists now perceive a much wider range of opportunity in the search for answers about schizophrenia and other neurological illnesses (diseases affecting the nervous systems) than before. Torrey has noted that "we are in the midst of an explosion of knowledge in the neurosciences and its effects are spilling over to schizophrenia." (Surviving Schizophrenia, p. 129).

New Resources

Brain Tissue Banks

Brain tissue banks have been established to provide researchers with brain tissue for the study of neurological diseases, including schizophrenia. The Canadian Brain Tissue Bank is located in Toronto and is managed by the Canadian Neurological Coalition. (See Appendix II for a description of the work of the Brain Tissue Bank and how brains may be donated for research.)

Imaging Facilities

Research in the fields of neurology and biochemistry is greatly benefiting from the development of new brain imaging techniques that allow researchers to observe brains in living human beings directly. Brain investigations are no longer limited to the use of brain tissue from the deceased. (Appendix III gives a brief description of the different types of imaging.)

Basic Science Laboratories

The way in which neuroleptic medication affects dopamine receptors in the brain and reduces their ability to receive messages from the neurotransmitter dopamine, as explained earlier in the handbook, has led to a growing body of research on the dopamine system. Dr. Philip Seeman of the University of Toronto has been in the forefront of research in this area. Through his efforts and those of others, a picture of how neuroreceptors interact is gradually being clarified.

Among other benefits, this work promises significant improvement in the kinds of medication available for the treatment of schizophrenia in the near future.

One such medication, known as Clozaril (Clozapine), was introduced in 1989 in the United States, and is currently awaiting approval for its widespread use in Canada by the Health Protection Branch of the Department of National Health and Welfare. Known to be effective in treating cases that are resistant to other types of anti-psychotic medications, Clozaril also appears useful in the treatment of the negative symptoms of schizophrenia and the lowering of many side effects commonly caused by neuroleptics, such as stiffness and strong spasms of the eyes, neck and back. Because Clozaril has been linked with the reduction of white blood cells necessary to combat disease, careful consideration is required before the drug is accepted as a standard neuroleptic.

Genetic Laboratories

In the field of genetics it has long been known that members of families who have a history of schizophrenia have a greater likelihood of becoming ill with this disease. The closer the family relationship to someone with schizophrenia the higher the degree of risk. A great deal of attention is now being given to the role that our genes play in neurological illnesses. In many diseases, scientists have undertaken major work to find the faulty gene or genes responsible for such illnesses. Success has been achieved in a number of diseases. A recent example is the discovery of the defective gene responsible for cystic fibrosis at The Hospital for Sick Children in Toronto.

Well-publicized observations by Drs. Bassett and Jones at the University of British Columbia led to the identification of a chromosome 5 abnormality in an uncle and his nephew. Both suffer from schizophrenia and both have several identical physical abnormalities. Based on the Bassett and Jones findings, research has been conducted on a number of British and Icelandic families with a history of schizophrenia in several generations. Drs. Gurling and Sherrington of the University of London found that the chromosome 5 segment identified by Bassett and Jones seemed to be crucial to inheritance of schizophrenia in these families. Other groups, studying other families with a history of schizophrenia, have not found this linkage.

Social Science Programs

Research in the social sciences is also offering some encouraging results. Commenting on recent work in the United States and in Canada at Laval and McMaster Universities, Dr. Heather Munroe-Blum, Dean of Social Work at the University of Toronto noted that "of the few studies of psychosocial interventions (combined with drug therapy) most have demonstrated a significant reduction in relapse rates when compared with the drug therapy alone." (The Medical Post, March 13. 1990).

Co-ordination Effort

Starting a few years ago, the National Institute of Mental Health in the United States began a determined research attack on schizophrenia. This resulted in the development of "A National Plan for Schizophrenia Research." The plan covers all forms of research activity and is being supported by rapidly increasing annual amounts of public funds.

In Canada, a workshop on "Multicentre Study of Schizophrenia" sponsored by Health and Welfare Canada, was held in Ottawa in October 1989. This brought together leading researchers from across the country, and representatives from patient groups, voluntary family organizations, service agencies and the federal government.

The need for a national research strategy was clearly recognized in the proceedings. As a first step toward this objective, an interim group has been formed, with Dr. Barry Jones as Chairman. According to the report from the workshop, this group now has the task of telling the public and its political representatives about current schizophrenia research needs and their importance. The report also notes that a record of resources and people who could be usefully involved in research initiatives is needed. It concluded that a co-ordinating body is required to assist in moving ahead toward these goals.

Better Outlook for Research

Schizophrenia research opportunities now promise better understanding of the illness and eventually full knowledge of its cause or causes. Better treatment for patients and more effective support services in the community are now within reach. In the longer term, there is the hope of a cure. The challenge to both private and public sectors is to provide sufficient funding to make these possibilities a reality.

Research Findings of Interest

• A higher percentage of people born in winter and early spring develop schizophrenia than during the remainder of the year. This may suggest viral infection.
• More people with schizophrenia suffer birth complications than do the general population. This implies that early brain damage may play a role.
• As mentioned earlier, schizophrenia runs in families. This suggests genetic inheritance.
• Schizophrenia and manic-depressive psychosis may run in the same families. What is inherited may be a vulnerability to psychosis.
• More people with schizophrenia have enlarged cisterns or ventricles in the brain than do the general population.
• This enlargement could be produced by infection or trauma in early life, perhaps prenatal life.
• A large percentage of those with schizophrenia have discontinuous eye movements. This eye-tracking disorder seems to he inherited.
• The course of schizophrenia is different for males and females, for example, the age of onset is typically earlier for males. This may be a clue to a hormonal connection.
• Some schizophrenics have a greater density of dopamine type 2 receptors than the regular population. This may be inherited.
• Some with schizophrenia seem to have a deficiency of frontal lobe (front of the brain) functioning. This may help to explain "negative" symptoms in particular.
• Some schizophrenics have abnormalities of left or right brain functioning. The left brain seems to be most affected.
• Some with schizophrenia have memory system, arousal system and attention system abnormalities. A common neurotransmitter system may be implicated.
• The outcome in schizophrenia is better in the long term than in the short term. Aging seems to reduce the symptoms. This may be an effect of brain cell loss.

Glossary

Asthma: A respiratory disease marked by intermittent fits of difficult breathing that has a wheezing sound, and is accompanied by chest constriction, coughing, and discharge of phlegm.

Behaviourism: An approach to psychology in which only observable, measurable behaviour is studied. Unconscious processes, such as dreams, have no relevance.

Biochemistry: Chemistry that deals with the chemical make-up of living organisms and their life processes.

Biological Psychiatry: A school of psychiatric thought that emphasizes physical, chemical and neurologic causes of psychiatric illness and treatment approaches.

Bipolar (Manic-Depressive) Disorder: A mental illness characterized by two opposite and extreme types of moods: episodes of mania (hyperactivity, excessive cheerfulness and excitement, decreased need of sleep, flight of ideas, etc.) and depression (marked by poor appetite and poor self-esteem, sleep disturbances [insomnia or oversleeping], hopelessness, loss of energy, suicidal ideas, etc.). An ill individual may experience a series of manic or depressive episodes, or both.

Cardiopulmonary Resuscitation (CPR): The re-establishment of heart and lung action for cardiac arrest (sudden and often unexpected stoppage of effective heart action) using a well-defined, specialized procedure. This may include the clearance of air passages to the lungs, heart massage, and use of drugs.

Chromosome: Any one of the threadlike structures in the nucleus of a cell that function in the transmission of genetic information.

Cystic Fibrosis (CF): An inherited disorder of the exocrine glands. There is no known cure yet.

Epilepsy: A disorder characterized by disturbances of the central nervous system and usually illustrated by convulsive attacks or seizures that often leave the individual unconscious.

Forensic Unit: A hospital team that makes assessments to provide information for use in legal proceedings.

Gene: Located on a chromosome, a gene regulates a particular body function.

Genetics: The science that studies the principles and mechanics of heredity, particularly with respect to the processes by which traits are passed from parents to offspring, as well as the causes of the similarities and differences.

Hypoglycemia: A condition marked by an abnormally low level of sugar in the blood. Symptoms may include sweating, trembling hands, and heart palpitations.

Indictable Offence: An action by an individual for which he or she can be charged under the law and punished if found guilty.

Insight: With respect to mental illness, this is a person's awareness of the presence and meaning of symptoms and their origin and role in producing the illness. Although insight alone may not "cure" the illness, emotional acceptance of one's illness is often required before meaningful changes can occur and for the symptoms to diminish.

Kraepelin, Dr. Emil ( 1856-1926): A German psychiatrist well known for his extensive classification of mental illnesses. He was one of the first to describe the concept of dementia praecox, the name formerly given to schizophrenia.

Long-Acting (Depot) Injection: This type of injection into a muscle slowly releases the medication into the bloodstream. It is usually used for patients who have difficulty taking neuroleptics orally as an out-patient, or who refuse to do so.

Maintenance Dosage: A dosage that, taken at set intervals, helps to control symptoms.

Metabolism: The physical and chemical processes in a living organism concerned with the absorption of nutrients into the blood after digestion. This involves the conversion of nutrients into energy in order to build up and maintain the organism.

Multiple or Split Personality: A generally rare disorder characterized by the appearance of two or more distinct and separate personalities in one person.

Neurosis: An emotional disturbance in which the patient's behaviour and thinking are poorly adapted and cause suffering. The patient does not exhibit psychotic symptoms and behaviour usually remains within socially acceptable limits.

Occupational Therapy: Therapy in which the patient is involved in a variety of creative tasks and activities related to daily living. This may include the making of handicrafts (carpentry, pottery, painting, etc.) and expressive activities such as participation in dramatic role playing, music or poetry reading.

Out-patient: An individual who comes to the hospital for medical or surgical care but does not need to be admitted as an in-patient.

Psychiatric Nurse: A nurse with specialized training and experience in dealing with psychiatric patients.

Psychiatrist: A licensed physician who specializes in psychiatry. Training involves a medical degree and four years or more of postgraduate training. Compare to Psychologist.

Psychiatry: The medical science that deals with the origin, diagnosis, prevention and treatment of mental and emotional disorders.

Psychoanalysis: A talking therapy introduced by Dr. Sigmund Freud which involves the analysis of dreams, childhood experiences, etc.. to overcome present problems. It is founded on the belief that unconscious, repressed instinctual drives and negative early childhood experiences are mainly responsible for an individual's problems.

Psychologist: A person who holds a degree in psychology from an accredited program. Psychologists involved with patient care are called clinical psychologists. They may provide psychotherapy but are not authorized to prescribe medication. Compare to Psychiatrist.

Psychology: An academic discipline, a profession, and a science dealing with the study of mental processes and behaviour of people and animals.

Psychosis: A major mental disorder in which a person's ability to think, respond emotionally, remember, communicate, interpret reality and behave appropriately is impaired to a degree that greatly interferes with the person's capacity to meet the ordinary demands of life.

Psychosomatic Illness: A disorder with physical symptoms that may be produced in part by stress or other supposedly psychological, non-physical factors.

Psychotherapy: The treatment of a patient's mental and emotional problems through verbal communication between patient and therapist. There are many types of psychotherapy, varying in aims, intensity, duration, and theoretical bases. Supportive therapy is a form of psychotherapy.

Receptor: Special places on nerve endings capable of responding to a chemical or physical stimulus from within the body or in the environment. Some drugs are known to increase or decrease sensitivity of a receptor.

Rehabilitation: The restoration of an individual to normal functioning after a disabling disease, injury, addiction, or imprisonment. Rehabilitation programs are designed to help the patient to sustain an independent existence.

Remission: The subsiding of symptoms. In schizophrenia this may take the form of the partial or complete decline of symptoms.

Schizophrenogenic: This term refers to the tendency to cause schizophrenia. Used in combination with the false and outdated belief that mothers of those ill with schizophrenia were to blame for the appearance of this disease in their offspring.

Self-help Group: A group of people who meet to improve their situation through discussion and special activities. Unlike group psychotherapy, they are not usually led by a therapist.

Sheltered Workshop: An example of an employment or vocational program involving a simulated work situation. Contracts are received from local businesses and the mentally ill individual is trained and supervised to do the work. Job types vary, depending on the institution. Common jobs are unskilled manual labour (such as factory work) and clerical work. Although the main benefits of the program are to provide basic work skills, individuals receive modest payment for their efforts.

Short-acting Injection: The use of a needle to administer neuroleptics in a muscle during an emergency situation such as an acute attack, when a quick effect is needed. The effect wears off in 12 to 24 hours maximum.

Social Worker: A person with specialized training to help individuals with their social adjustment. With regard to mental illness this may involve the counselling of individuals and their families in dealing with various social or emotional issues that are a result of the illness.

Stigma: A term indicating an individual's noticeable features--either physical or behavioural--that lead to societal rejection. In the context of mental illness, stigma refers to society's negative assessment of mentally ill people in general, often reflected in the public's negative treatment of such persons.

Vocational Counselling:Counselling involving a client's search and training for a job.

Watson, John B. (1878-1958): An American psychologist who led the development of the behaviourist school of thought.

Wilson's Disease: A rare hereditary disorder involving the body's inability to metabolize copper. The condition causes cirrhosis of the liver and severe mental disorder.

Resources

Schizophrenia Society of Canada

Note: Please contact provincial offices for latest update on chapter locations.

National Office:
814-75 The Donway West, Don Mills, Ontario, M3C 2E9
Tel: (416) 445-8204, FAX: (416) 445-2270

Provincial Offices and Chapter Locations:

Schizophrenia Society of Alberta
5th floor, 9942-108 St.
Edmonton, AB T5K 2J5
Phone (780) 427-0579, Fax (780) 422-2800
Toll-Free 1-800-661-4644
e-mail: [email protected]
Edmonton, Calgary, Peace River, Camrose, Red Deer, Medicine Hat, Lethbridge

British Columbia Friends of Schizophrenics
201-6151 Westminster Highway, Richmond, B.C., V7C 4V4
Tel: (604) 270-7821,7841 (24 hours), FAX: (604) 270-9861
Abbotsford, Bulkley Valley, Burnaby, Campbell River, Chilliwack, Courtenay, Cranbrook, Fort St. John, Gibsons, Kelowna, Langley, Maple Ridge, Nanaimo, Nelson, North Shore, Penticton, Powell River, Prince Rupert, Salmon Arm, Surrey/White Rock, Terrace, Vancouver, Vernon, Victoria, Williams Lake

Manitoba Schizophrenia Society, Inc.
4-1000 Notre Dame Avenue
Winnipeg, Manitoba R3E 0N3
Tel: (204) 786-1616

SSOC - New Brunswick Family Support Group
c/o Place 400, 400 Main Street, Saint John, New Brunswick, E2K 1J4
Tel: (506) 633-1705

Schizophrenia Society of Nova Scotia
Administration Office
Nova Scotia Hospital, Room 115, DeWolfe Building, Drawer 1004
Dartmouth, Nova Scotia, B2Y 3Z9
Tel: (902) 465-2601, 464-3456
Annapolis Valley, Antigonish, Cape Breton, Yarmouth

Ontario Friends of Schizophrenics
P.O. Box 217, Station "O"
Toronto, Ontario M4A 2W3
Tel: (416) 449-6830
Barrie, Brampton, Brantford, Burlington, Chatham, Cobourg/Port Hope, Durham, Elgin/St. Thomas, Elliot Lake, Grey/Bruce, Guelph, Hamilton, Kingston, Leeds/Grenville, London, Midland/Penetang, Niagara Falls, North Bay, Oakville, Ottawa/Carleton, Peterborough, Quinte/Belleville, St. Catharines, Sarnia, Sault St. Marie, Stratford, Sudbury, Timmins, Thunder Bay, Windsor, York Region, Toronto Area: East York, Markham, Mississauga, North York East, North York West, Scarborough, Toronto,

SSOC - Prince Edward Island Family Support Group
c/o 70 Fitzroy Street, Charlottetown, P.E.I., C1A 1S1
Tel: (902) 566-3034

Saskatchewan Friends of Schizophrenics
P.O. Box 305, Regina. Saskatchewan, S4P 3A1
Tel: (306) 584-2620
Saskatoon, Weyburn

Provincial and Members Association Locations

Quebec
La Federation quebecoise des associations des familles et amis de la personne atteinte de maladie mentale
432A, boul Saint-Cyrille ouest, Quebec, G1S 1S3
Tel: (418) 682-3780
Cartierville, Chicoutimi, Granby, Levis, Longueil, Montmagny, Quebec City (3), Saint-Jerome, Shawinigan, Sherbrooke, Montreal Metropolitain: Dorval, Laval, Montreal (3)

Appendix I: Common Anti-Psychotic Medications

Five different chemical families of anti-psychotic drugs are used in most developed countries. Below are the families and the more common drugs in each family. You will note that each drug has two names: one is the official name for that chemical compound, the generic name; the other is the brand name used by the pharmaceutical companies. The correct dosage for your relative may be quite different from the amount another patient requires. That is why it may take some time to find the right amount to stabilize your relative.

Drug Family	Generic Name	Brand Name
PHÉNOTHIAZINES ALIPHATIQUES PHÉNOTHIAZINES PIPÉRAZINES injection par voie intramusculaire: PHÉNOTHIAZINES PIPÉRIDINES THIOXANTHÈNES par voie intramusculaire: BUTYROPHÉNONES (tablette), (injection) DEBENZOXAZÉPINES DIHYDROINDOLONES	CHLORPROMAZINE PROMAZINE TRIFLUPROMAZINE TRIFLUOPÉRAZINE PERPHÉNAZINE FLUPHÉNAZINE PROCHLORPÉRAZINE ACETOPHÉNAZINE FLUPHÉNAZINE (DÉCANOATE DE) FLUPHÉNAXINE (ÉNANTHATE) THIORIDAXINE MÉSORIDAZINE THIOTHIXÈNE FLUPENTHIXOL ZUCLOPENTHIXOL DIHYDROCHLORIDE CHLORPROTHIXÈNE FLUPENTHIXOL (DÉCANOATE DE) ZUCLOPENTHIXOL (DÉCANOATE DE) HALOPÉRIDOL HALOPÉRIDOL (DÉCANOATE DE) PIMOZIDE DROPÉRIDOL FLUSPIRILINE PENFLURIDOL LOXAPINE MOLINDONE	LARGACTIL; THORAZINE SPARINE VESPERIN STELAZINE FENTAZINE; TRILAFON PROLIXIN; PERMITIL COMPAZINE TINDAL MODECATE MODITEN MELLARIL SERENTIL NORVANE FLUANXOL CLOPIXOL TARACTAN DEXIPOL CLOPIXOL HALDOL HALDOL DECANOATE ORAP INAPSINE IMPA SEMAP LOXITANE; DAXOL MOBAN

Courtesy of the World Schizophrenia Fellowship (July 1990)

** Addendum To Appendix **

Note: Clozapine to be available soon in Canada

It is expected that a new neuroleptic drug will be available for schizophrenia patients in Canada in the near future. Called clozapine, it belongs to the didemodiazepene chemical group. It will be marketed by Sandoz Canada Inc., a subsidiary of the giant Swiss drug company that developed it, under the trade name Clozaril.

This new anti-psychotic agent appears to cause fewer side effects (most importantly with respect to tardive dyskinesia) compared with other neuroleptics now available. It also gives better anti-psychotic results for some patients. There is, however, a greater risk of agranulocytosis for a small number. For these, this condition may lead to potentially fatal results, because it affects the immune system by limiting the body's ability to produce white blood cells. To guard against this, the drug's introduction will be accompanied by weekly blood testing for those who take it.

Appendix II: The Canadian Brain Tissue Bank 

As advances continue to be made in research laboratories throughout the world, more and more people are beginning to appreciate the enormous potential of post-mortem human brain tissue research. What the public does not seem to realize, however, is that although promising results are being reported and our understanding of severe neurologic and psychiatric disorders is improving, more significant progress is actually being delayed because of a scarcity of brain tissue donations.

The Canadian Brain Tissue Bank was established in 1981 in order to support medical research through the collection, storage, and distribution of brain tissue to interested scientific investigators. Such research is concerned with the causes, treatments and eventual cures for the many psychiatric and neurological disorders affecting so many people today. These include schizophrenia, Alzheimer's disease, dystonia, epilepsy, among many others.

Research over the past decade has shown that the study of human brain tissue is essential to increasing our understanding of how the nervous system functions and consequently in preventing and alleviating these illnesses. Most recently, post-mortem human brain research played a significant role in the development of a genetic test for Huntington's disease and a treatment for Parkinson's disease. Additionally, human brain tissue is necessary because several serious neurologic and psychiatric conditions affect only humans and therefore, animal models are not relevant.

For comparative purposes, brain tissue is needed from healthy individuals, as well as from those who died with a neurologic or psychiatric illness. There is also a critical need for relatives of people with genetically inherited disorders to donate their brains after death. Samples of DNA are kept from all tissue to help in future genetic testing.

What You Should Know About Brain Donation

• Your next-of-kin must verify your intent to donate at the time of your death.

• Even if a decision to donate was not made prior to death, family members can arrange for the donation of brain tissue after death.

• In all cases, the identity of each donor and potential donor will remain strictly confidential.

• Because the brain is removed from an incision in the back of the skull, there is no disfigurement. Thus, brain donation does not interfere with an open casket or other traditional funeral arrangements.

• An autopsy is not necessary. Brain tissue removal will not change the appearance of the donor. Only the donor's brain will be sent to the Brain Bank.

• When appropriate, a diagnostic report will be sent to the family and health professionals involved with the case.

• There are four major circumstances where a brain generally becomes unsuitable for donation. These are: when a person dies while on a respirator; when a person dies from a highly contagious disease; when a person plans to make a whole body donation to a medical school; and when a person makes a donation of heart, eyes, etc., and is therefore maintained on life support systems.

• The Canadian Brain Bank is funded by government grants and private foundations. Usually, brain donation involves no cost to the family. Occasionally, however, charges may be incurred with the local hospital or funeral director.

• Because the majority of studies can be carried out on a very small amount of tissue, each donated brain provides a large number of samples for many researchers.

• Autopsies must be made promptly after death. One half of the brain is frozen immediately, for future biochemical studies. The other half is placed in a special solution called formalin for pathological studies and determination of the exact disease process.

• The Brain Bank should be contacted as soon as a potential donor dies. Delay could result in the loss of the donation.

How to Donate

Becoming a prospective tissue donor is easy. Call the Canadian Brain Tissue Bank at (416) 977-3398. If you prefer, you can obtain a copy of the pamphlet entitled A Gift of Hope - Canadian Brain Tissue Bank and fill out the attached donor card. But first, do the most important thing of all: inform your family that you would like your brain donated to the Brain Bank after death; they will have to do it for you and they must understand why you wish to donate.

Appendix III: Types of Brain Imaging Techniques 

Note: The following techniques can also be used for other parts of the body.

Techniques that Measure Structure

These allow for the study of brain anatomy and possible structural abnormalities.

Computerized Tomography (CT)

Developed in the early 1970s, this is one of the earliest imaging techniques. Basically, CT emits a beam of X-rays that rotates around the patient. Detectors placed on the other side of the patient's body pick up the radiation. The computer aspect of CT then translates the pattern of radiation into images of detailed, cross-sectional slices.

CT has proven useful in spotting brain abnormalities that may be connected with different types of mental illness, including schizophrenia, depression, and bipolar disorder. Additionally, it is a painless procedure that requires no special preparation.

One of the more consistent findings using CT is an indication that schizophrenia patients appear to have larger ventricular sections of the brain when compared to other individuals. The ventricles are cavities in the brain filled with fluid, and it is thought that an enlargement in this area occurs at the expense of other brain tissue.

Magnetic Resonance Imaging (MRI)

Also known as NMR (nuclear magnetic resonance), MRI is a relatively new technique that has become widely available over the last four years. Unlike CT, it can image brain regions in different directions and uses a magnetic field as opposed to radiation. It can also produce an accurate reconstruction of brain structures, thus leading to improved visualization, particularly of areas not easily picked up by CT. Because MRI does not use ionizing radiation, it poses a minimum risk for the patient.

Unfortunately, because of its newness, more research needs to be conducted on its potential range of applicability. Several studies done with MRI, however, appear to support the observation of several abnormalities in people with schizophrenia, including enlarged ventricles.

Techniques that Measure Function

These enable the study of the brain at work, through the measurement of metabolic activity and neurotransmitter systems.

Regional Cerebral Blood Flow (RCBF)

This method involves the measurement of the blood flow using what is known as tracers. A tracer is a substance that carries or emits electromagnetic radiation. The most common is the use of a safe radioactive gas called xenon 133 in which its rate of disappearance is measured after the patient has inhaled it. One study using this method has indicated that there is an abnormality in the blood flow of schizophrenic patients.

By having the individual perform various tests or "challenges," RCBF can be used to map patterns of metabolic activity in the brain. For example, one study has demonstrated that patients with schizophrenia appear to have a reduced ability to use the parts of the brain known as the frontal lobes. This finding is consistent with the general hypothesis or premise that schizophrenic individuals suffer from frontal lobe dysfunction. Additionally, there have been some abnormalities observed with the left hemisphere. that is the left half of the brain, of schizophrenic patients. This seems consistent with the language and auditory abnormalities noticed in schizophrenia.

Single Photo Emissions Computed Tomography (SPECT)

This scanning technique uses the method of both CT and MRI in combination with the detection of radioactive particles (photons), which are emitted through an externally administered tracer. Xenon can sometimes be used as a tracer but its low energy makes it impractical for detection. At present, tracers exist for dopamine receptors.

Tracers appropriate for imaging entire neurotransmitter systems are currently being developed, and may make it possible to use SPECT to monitor the effects of treatment and mechanisms of drug action. This method has already proven particularly fruitful in its application to Alzheimer's disease.

SPECT is less expensive to use than PET and although its resolution is not as good as that of PET, it may prove useful in a variety of applications. For example, further development of this technique may make it feasible for use in smaller university centres and community hospitals. Additionally, for research purposes. both SPECT and PET have the advantage of being able to evaluate a large group of samples rapidly.

Positron Emission Tomography (PET)

Unlike RCBF and SPECT studies, which rely on the detection of single photons, PET detects two photons, thus allowing for better, clearer imaging.

Although PET is the most flexible and sensitive of all techniques, it unfortunately requires specialized equipment and considerable expertise to run it, thus making the purchase and operation of PET expensive.

PET research appears especially promising in the area of neurotransmitter systems in the brain. An example is the study of nerve receptors using the neurotransmitter dopamine, and in particular their relation with schizophrenia. Furthermore, with PET, one can examine the effects that various medications have on different receptors. This could have great significance for the understanding of side effects such as tardive dyskinesia, and could lead to the development of better effective treatments for schizophrenia.

Source: 
Health Canada Online
Published by Health Canada
in Co-operation with the Schizophrenia Society of Canada
Updated: January 2003

---

Reviewed by athealth on February 7, 2014.

Terms You Need to Know

Dementia is a medical condition that interferes with the way the brain works. Symptoms include anxiety, paranoia, personality changes, lack of initiative, and difficulty acquiring new skills. Besides Alzheimer's disease, some other types or causes of dementia include alcoholic dementia, depression, delirium, HIV/AIDS-related dementia, Huntington's disease (a disorder of the nervous system), inflammatory disease (for example, syphilis), vascular dementia (blood vessel disease in the brain), tumors, and Parkinson's disease.

Alzheimer's disease is the most common form of dementia. It proceeds in stages over months or years and gradually destroys memory, reason, judgment, language, and eventually the ability to carry out even simple tasks.

Delirium is a state of temporary but acute mental confusion that comes on suddenly. Symptoms may include anxiety, disorientation, tremors, hallucinations, delusions, and incoherence. Delirium can occur in older persons who have short-term illnesses, heart or lung disease, long-term infections, poor nutrition, or hormone disorders. Alcohol or drugs (including medications) also may cause confusion.

Delirium may be life-threatening and requires immediate medical attention.

Depression can occur in older persons, especially those with physical problems. Symptoms include sadness, inactivity, difficulty thinking and concentrating, and feelings of despair. Depressed persons often have trouble sleeping, changes in appetite, fatigue, and agitation. Depression usually can be treated successfully.

Purpose of this Booklet

This booklet is about Alzheimer's disease and other types of dementia. It presents information for patients, family members, and other caregivers. It talks about the effects Alzheimer's disease can have on you, your family members, and your friends.

The booklet describes the early signs and symptoms of Alzheimer's disease. Sources of medical, social, and financial support are listed in the back of the booklet. This booklet is not about treating Alzheimer's disease.

What Is Alzheimer's Disease?

In Alzheimer's disease and other dementias, problems with memory, judgment, and thought processes make it hard for a person to work and take part in day-to-day family and social life. Changes in mood and personality also may occur. These changes can result in loss of self-control and other problems.

Some 2 to 4 million persons have dementia associated with aging. Of these individuals, as many as two-thirds have Alzheimer's disease.

Although there is no cure for Alzheimer's disease at this time, it may be possible to relieve some of the symptoms, such as wandering and incontinence.

The earlier the diagnosis, the more likely your symptoms will respond to treatment. Talk to your doctor as soon as possible if you think you or a family member may have signs of Alzheimer's disease.

Research is under way to find better ways to treat Alzheimer's disease. Ask your doctor if there are any new developments that might help you.

Who Is Affected?

The chances of getting Alzheimer's disease increase with age. It usually occurs after age 65. Most people are not affected even at advanced ages. There are only two definite factors that increase the risk for Alzheimer's disease: a family history of dementia and Down syndrome.

Family History of Dementia

Some forms of Alzheimer's disease are inherited. If Alzheimer's disease has occurred in your family members, other members are more likely to develop it. Discuss any family history of dementia with your family doctor.

Down Syndrome

Persons with Down syndrome have a higher chance of getting Alzheimer's disease. Close relatives of persons with Down syndrome also may be at risk.

What Are the Signs of Alzheimer's Disease?

The classic sign of early Alzheimer's disease is gradual loss of short-term memory. Other signs include:

• Problems finding or speaking the right word.
• Inability to recognize objects.
• Forgetting how to use simple, ordinary things, such as a pencil.
• Forgetting to turn off the stove, close windows, or lock doors.

Mood and personality changes also may occur. Agitation, problems with memory, and poor judgment may cause unusual behavior. These symptoms vary from one person to the next.

Symptoms appear gradually in persons with Alzheimer's disease but may progress more slowly in some persons than in others. In other forms of dementia, symptoms may appear suddenly or may come and go.

If you have some of these signs, this does not mean you have Alzheimer's disease. Anyone can have a lapse of memory or show poor judgment now and then. When such lapses become frequent or dangerous, however, you should tell your doctor about them immediately.

Possible Signs of Alzheimer's Disease

Do you have problems with any of these activities?

• Learning and remembering new information.

  Do you repeat things that you say or do? Forget conversations or appointments? Forget where you put things?

• Handling complex tasks.

  Do you have trouble performing tasks that require many steps such as balancing a checkbook or cooking a meal?

• Reasoning ability.

  Do you have trouble solving everyday problems at work or home, such as knowing what to do if the bathroom is flooded?

• Spatial ability and orientation.

  Do you have trouble driving or finding your way around familiar places?

• Language.

  Do you have trouble finding the words to express what you want to say?

• Behavior.

  Do you have trouble paying attention? Are you more irritable or less trusting than usual?

Remember, everyone has occasional memory lapses. Just because you can't recall where you put the car keys doesn't mean you have Alzheimer's disease.

Consulting the Doctor

Identifying mild cases of Alzheimer's disease can be very difficult. Your doctor will review your health and mental status, both past and present. Changes from your previous, usual mental and physical functioning are especially important.

Persons with Alzheimer's disease may not realize the severity of their condition. Your doctor will probably want to talk with family members or a close friend about their impressions of your condition.

The doctor's first assessment for Alzheimer's disease should include a focused history, a physical examination, a functional status assessment, and a mental status assessment.

Medical and Family History

Questions the doctor may ask in taking your history include: How and when did problems begin? Have the symptoms progressed in steps or worsened steadily? Do they vary from day to day? How long have they lasted?

Your doctor will ask about past and current medical problems and whether other family members have had Alzheimer's disease or another form of dementia.

Education and other cultural factors can make a difference in how you will do on mental ability tests. Language problems (for example, difficulty speaking English) can cause misunderstanding. Be sure to tell the doctor about any language problems that could affect your test results.

It is important to tell the doctor about all the drugs you take and how long you have been taking them. Drug reactions can cause dementia. Bring all medication bottles and pills to the appointment with your doctor.

Do you take any medications? Even over-the-counter drugs, eye drops, and alcohol can cause a decline in mental ability. Tell your doctor about all the drugs you take. Ask if the drugs are safe when taken together.

Physical Examination

A physical examination can determine whether medical problems may be causing symptoms of dementia. This is important because prompt treatment may relieve some symptoms.

Functional Status Assessment

The doctor may ask you questions about your ability to live alone. Sometimes, a family member or close friend may be asked how well you can do activities like these:

• Write checks, pay bills, or balance a checkbook.
• Shop alone for clothing, food, and household needs.
• Play a game of skill or work on a hobby.
• Heat water, make coffee, and turn off the stove.
• Pay attention to, understand, and discuss a TV show, book, or magazine.
• Remember appointments, family occasions, holidays, and medications.
• Travel out of the neighborhood, drive, or use public transportation.

Sometimes a family member or friend is not available to answer such questions. Then, the doctor may ask you to perform a series of tasks ("performance testing").

Mental Status Assessment

Several other tests may be used to assess your mental status. These tests usually have only a few simple questions. They test mental functioning, including orientation, attention, memory, and language skills. Age, educational level, and cultural influences may affect how you perform on mental status tests. Your doctor will consider these factors in interpreting test results.

Alzheimer's disease affects two major types of abilities:

• The ability to carry out everyday activities such as bathing, dressing, using the toilet, eating, and walking.
• The ability to perform more complex tasks such as using the telephone, managing finances, driving a car, planning meals, and working in a job. When a person has Alzheimer's disease, problems with complex tasks appear first and over time progress to more simple activities.

Treatable Causes of Dementia

Sometimes the physical examination reveals a condition that can be treated. Symptoms may respond to early treatment when they are caused by:

• Medication (including over-the- counter drugs).
• Alcohol.
• Delirium.
• Depression.
• Tumors.
• Problems with the heart, lungs, or blood vessels.
• Metabolic disorders (such as thyroid problems).
• Head injury.
• Infection.
• Vision or hearing problems.

Drug reactions are the most common cause of treatable symptoms. Older persons may have reactions when they take certain medications. Some medications should not be taken together. Sometimes, adjusting the dose can improve symptoms.

Delirium and depression may be mistaken for or occur with Alzheimer's disease. These conditions require prompt treatment. See the inside front cover of this booklet for more information on delirium and depression.

Special Tests

Gathering as much information as possible will help your doctor diagnose early Alzheimer's disease while the condition is mild. You may be referred to other specialists for further testing.

Some special tests can show a person's mental strengths and weaknesses and detect differences between mild, moderate, and severe impairment. Tests also can tell the difference between changes due to normal aging and those caused by Alzheimer's disease.

If you go to a special doctor for these tests, he or she should return all test results to your regular family doctor. The results will help your doctor track the progress of your condition, prescribe treatment, and monitor treatment effects.

Getting the Right Care

When the diagnosis is Alzheimer's disease, you and your family members have serious issues to consider. Talk with your doctor about what to expect in the near future and later on, as your condition progresses. Getting help early will help ensure that you get the care that is best for you.

When tests do not indicate Alzheimer's disease, but your symptoms continue or worsen, check back with your doctor. More tests may be needed. If you still have concerns, even though your doctor says you do not have Alzheimer's disease, you may want to get a second opinion.

Whatever the diagnosis, followup is important.

Report any changes in your symptoms. Ask the doctor what followup is right for you. Your doctor should keep the results of the first round of tests for later use. After treatment of other health problems, new tests may show a change in your condition.

Recognizing Alzheimer's disease in its early stages, when treatment may relieve mild symptoms, gives you time to adjust. During this time, you and your family can make financial, legal, and medical plans for the future.

Coordinating Care

Your health care team may include your family doctor and medical specialists such as psychiatrists or neurologists, psychologists, therapists, nurses, social workers, and counselors. They can work together to help you understand your condition, suggest memory aids, and tell you and your family about ways you can stay independent as long as possible.

Talk with your doctors about activities that could be dangerous for you or others, such as driving or cooking. Explore different ways to do things.

Telling Family and Friends

Ask your doctor for help in telling people who need to know that you have Alzheimer's disease &emdash; members of your family, friends, and coworkers, for example.

Alzheimer's disease is stressful for you and your family. You and your caregiver will need support from others. Working together eases the stress on everyone.

Where To Get Help?

Learning that you have Alzheimer's disease can be very hard to deal with. It is important to share your feelings with family and friends.

Many kinds of help are available for persons with Alzheimer's disease, their families, and caregivers. Turn to the back of this booklet for a list of resources for patients and families. These resources include:

• Support groups.
  Sometimes it helps to talk things over with other people and families who are coping with Alzheimer's disease. Families and friends of people with Alzheimer's disease have formed support groups. The Alzheimer's Association has active groups across the country. Many hospitals also sponsor education programs and support groups to help patients and families.
• Financial and medical planning.
  Time to plan can be a major benefit of identifying Alzheimer's disease early. You and your family will need to decide where you will live and who will provide help and care when you need them.
• Legal matters.
  It is also important to think about certain legal matters. An attorney can give you legal advice and help you and your family make plans for the future. A special document called an advance directive lets others know what you would like them to do if you become unable to think clearly or speak for yourself.

Other Booklets Are Available

The information in this booklet is based on Recognition and Initial Assessment of Alzheimer's Disease and Related Dementias: Clinical Practice Guideline No. 19. A multidisciplinary panel of physicians, psychiatrists, psychologists, neurologists, nurses, a geriatrician, a social worker, and two consumer representatives developed the guideline. The Agency for Health Care Policy and Research (AHCPR), an agency of the U.S. Department of Health and Human Services, supported its development. Other AHCPR guidelines may be helpful to families affected by Alzheimer's disease. They include the following:

• Depression Is a Treatable Illness: Patient Guide discusses major depressive disorder, which usually can be treated successfully with the help of a health professional. (AHCPR Publication No. 93-0053)
• Recovering After a Stroke: Patient and Family Guide tells how to help a person who has had a stroke achieve the best possible recovery. (AHCPR Publication No. 95-0664)
• Understanding Urinary Incontinence in Adults: Patient Guide describes why people lose urine when they don't want to and what can be done about it. (AHCPR Publication No. 96-0684)
• Preventing Pressure Ulcers: Patient Guide discusses symptoms and causes of bed sores and ways to prevent them. (AHCPR Publication No. 92-0048)
• Treating Pressure Sores: Consumer Guide describes basic steps of care for bed sores. (AHCPR Publication No. 95-0654)

For more information on these or other guidelines, or to receive more copies of this booklet, call toll-free: 800-358-9295. Or write to:Agency for Health Care Policy and Research, Publications Clearinghouse, P.O. Box 8547, Silver Spring, MD 20907

Source: Agency for Healthcare Research and Quality

AHCPR Publication No. 96-0704

Page last modified or reviewed by athealth.com on February 4, 2014

What is depression?

Everyone occasionally feels blue or sad, but these feelings are usually fleeting and pass within a couple of days. When a person has a depressive disorder, it interferes with daily life, normal functioning, and causes pain for both the person with the disorder and those who care about him or her. Depression is a common but serious illness, and most who experience it need treatment to get better.

Many people with a depressive illness never seek treatment. But the vast majority, even those with the most severe depression, can get better with treatment. Intensive research into the illness has resulted in the development of medications, psychotherapies, and other methods to treat people with this disabling disorder.

What are the different forms of depression?

There are several forms of depressive disorders. The most common are major depressive disorder and dysthymic disorder.

Major depressive disorder, also called major depression, is characterized by a combination of symptoms that interfere with a person's ability to work, sleep, study, eat, and enjoy once–pleasurable activities. Major depression is disabling and prevents a person from functioning normally. An episode of major depression may occur only once in a person's lifetime, but more often, it recurs throughout a person's life.

Dysthymic disorder, also called dysthymia, is characterized by long–term (two years or longer) but less severe symptoms that may not disable a person but can prevent one from functioning normally or feeling well. People with dysthymia may also experience one or more episodes of major depression during their lifetimes.

Some forms of depressive disorder exhibit slightly different characteristics than those described above, or they may develop under unique circumstances. However, not all scientists agree on how to characterize and define these forms of depression. They include:

Psychotic depression, which occurs when a severe depressive illness is accompanied by some form of psychosis, such as a break with reality, hallucinations, and delusions.

Postpartum depression, which is diagnosed if a new mother develops a major depressive episode within one month after delivery. It is estimated that 10 to 15 percent of women experience postpartum depression after giving birth.¹

Seasonal affective disorder (SAD), which is characterized by the onset of a depressive illness during the winter months, when there is less natural sunlight. The depression generally lifts during spring and summer. SAD may be effectively treated with light therapy, but nearly half of those with SAD do not respond to light therapy alone. Antidepressant medication and psychotherapy can reduce SAD symptoms, either alone or in combination with light therapy.²

Bipolar disorder, also called manic-depressive illness, is not as common as major depression or dysthymia. Bipolar disorder is characterized by cycling mood changes-from extreme highs (e.g., mania) to extreme lows (e.g., depression). Visit the NIMH website for more information about bipolar disorder.

What are the signs and symptoms of depression?

People with depressive illnesses do not all experience the same symptoms. The severity, frequency and duration of symptoms will vary depending on the individual and his or her particular illness.

Symptoms include:

• Persistent sad, anxious or "empty" feelings
• Feelings of hopelessness and/or pessimism
• Feelings of guilt, worthlessness and/or helplessness
• Irritability, restlessness
• Loss of interest in activities or hobbies once pleasurable, including sex
• Fatigue and decreased energy
• Difficulty concentrating, remembering details and making decisions
• Insomnia, early–morning wakefulness, or excessive sleeping
• Overeating, or appetite loss
• Thoughts of suicide, suicide attempts
• Persistent aches or pains, headaches, cramps or digestive problems that do not ease even with treatment

What illnesses often co-exist with depression?

Depression often co–exists with other illnesses. Such illnesses may precede the depression, cause it, and/or be a consequence of it. It is likely that the mechanics behind the intersection of depression and other illnesses differ for every person and situation. Regardless, these other co–occurring illnesses need to be diagnosed and treated.

Anxiety disorders, such as post–traumatic stress disorder (PTSD),obsessive–compulsive disorder, panic disorder, social phobia and generalized anxiety disorder, often accompany depression.^3,4 People experiencing PTSD are especially prone to having co-occurring depression. PTSD is a debilitating condition that can result after a person experiences a terrifying event or ordeal, such as a violent assault, a natural disaster, an accident, terrorism or military combat.

People with PTSD often re–live the traumatic event in flashbacks, memories or nightmares. Other symptoms include irritability, anger outbursts, intense guilt, and avoidance of thinking or talking about the traumatic ordeal. In a National Institute of Mental Health (NIMH)–funded study, researchers found that more than 40 percent of people with PTSD also had depression at one-month and four-month intervals after the traumatic event.⁵

Alcohol and other substance abuse or dependence may also co–occur with depression. In fact, research has indicated that the co–existence of mood disorders and substance abuse is pervasive among the U.S. population.⁶

Depression also often co–exists with other serious medical illnesses such as

• heart disease
  
• stroke
  
• cancer
  
• hiv/aids
  
• diabetes
  
• Parkinson's disease

Studies have shown that people who have depression in addition to another serious medical illness tend to have more severe symptoms of both depression and the medical illness, more difficulty adapting to their medical condition, and more medical costs than those who do not have co–existing depression.7 Research has yielded increasing evidence that treating the depression can also help improve the outcome of treating the co–occurring illness.⁸

What causes depression?

There is no single known cause of depression. Rather, it likely results from a combination of genetic, biochemical, environmental, and psychological factors.

Research indicates that depressive illnesses are disorders of the brain. Brain-imaging technologies, such as magnetic resonance imaging (MRI), have shown that the brains of people who have depression look different than those of people without depression. The parts of the brain responsible for regulating mood, thinking, sleep, appetite and behavior appear to function abnormally. In addition, important neurotransmitters–chemicals that brain cells use to communicate–appear to be out of balance. But these images do not reveal why the depression has occurred.

Some types of depression tend to run in families, suggesting a genetic link. However, depression can occur in people without family histories of depression as well.9 Genetics research indicates that risk for depression results from the influence of multiple genes acting together with environmental or other factors.¹⁰

In addition, trauma, loss of a loved one, a difficult relationship, or any stressful situation may trigger a depressive episode. Subsequent depressive episodes may occur with or without an obvious trigger.

How do women experience depression?

Depression is more common among women than among men. Biological, life cycle, hormonal and psychosocial factors unique to women may be linked to women's higher depression rate. Researchers have shown that hormones directly affect brain chemistry that controls emotions and mood. For example, women are particularly vulnerable to depression after giving birth, when hormonal and physical changes, along with the new responsibility of caring for a newborn, can be overwhelming. Many new mothers experience a brief episode of the "baby blues," but some will develop postpartum depression, a much more serious condition that requires active treatment and emotional support for the new mother. Some studies suggest that women who experience postpartum depression often have had prior depressive episodes.

Some women may also be susceptible to a severe form of premenstrual syndrome (PMS), sometimes called premenstrual dysphoric disorder (PMDD), a condition resulting from the hormonal changes that typically occur around ovulation and before menstruation begins. During the transition into menopause, some women experience an increased risk for depression. Scientists are exploring how the cyclical rise and fall of estrogen and other hormones may affect the brain chemistry that is associated with depressive illness.¹¹

Finally, many women face the additional stresses of work and home responsibilities, caring for children and aging parents, abuse, poverty, and relationship strains. It remains unclear why some women faced with enormous challenges develop depression, while others with similar challenges do not.

How do men experience depression?

Men often experience depression differently than women and may have different ways of coping with the symptoms. Men are more likely to acknowledge having fatigue, irritability, loss of interest in once–pleasurable activities, and sleep disturbances, whereas women are more likely to admit to feelings of sadness, worthlessness and/or excessive guilt.^12,13

Men are more likely than women to turn to alcohol or drugs when they are depressed, or become frustrated, discouraged, irritable, angry and sometimes abusive. Some men throw themselves into their work to avoid talking about their depression with family or friends, or engage in reckless, risky behavior. And even though more women attempt suicide, many more men die by suicide in the United States.¹⁴

How do older adults experience depression?

Depression is not a normal part of aging, and studies show that most seniors feel satisfied with their lives, despite increased physical ailments. However, when older adults do have depression, it may be overlooked because seniors may show different, less obvious symptoms, and may be less inclined to experience or acknowledge feelings of sadness or grief.¹⁵

In addition, older adults may have more medical conditions such as heart disease, stroke or cancer, which may cause depressive symptoms, or they may be taking medications with side effects that contribute to depression. Some older adults may experience what some doctors call vascular depression, also called arteriosclerotic depression or subcortical ischemic depression. Vascular depression may result when blood vessels become less flexible and harden over time, becoming constricted. Such hardening of vessels prevents normal blood flow to the body's organs, including the brain. Those with vascular depression may have, or be at risk for, a co–existing cardiovascular illness or stroke.¹⁶

Although many people assume that the highest rates of suicide are among the young, older white males age 85 and older actually have the highest suicide rate. Many have a depressive illness that their doctors may not detect, despite the fact that these suicide victims often visit their doctors within one month of their deaths.¹⁷

The majority of older adults with depression improve when they receive treatment with an antidepressant, psychotherapy, or a combination of both.18 Research has shown that medication alone and combination treatment are both effective in reducing the rate of depressive recurrences in older adults.¹⁹ Psychotherapy alone also can be effective in prolonging periods free of depression, especially for older adults with minor depression, and it is particularly useful for those who are unable or unwilling to take antidepressant medication.^20,21

How do children and adolescents experience depression?

Scientists and doctors have begun to take seriously the risk of depression in children. Research has shown that childhood depression often persists, recurs and continues into adulthood, especially if it goes untreated. The presence of childhood depression also tends to be a predictor of more severe illnesses in adulthood.²²

A child with depression may pretend to be sick, refuse to go to school, cling to a parent, or worry that a parent may die. Older children may sulk, get into trouble at school, be negative and irritable, and feel misunderstood. Because these signs may be viewed as normal mood swings typical of children as they move through developmental stages, it may be difficult to accurately diagnose a young person with depression.

Before puberty, boys and girls are equally likely to develop depressive disorders. By age 15, however, girls are twice as likely as boys to have experienced a major depressive episode.²³

Depression in adolescence comes at a time of great personal change–when boys and girls are forming an identity distinct from their parents, grappling with gender issues and emerging sexuality, and making decisions for the first time in their lives. Depression in adolescence frequently co–occurs with other disorders such as anxiety, disruptive behavior, eating disorders or substance abuse. It can also lead to increased risk for suicide.^22,24

An NIMH–funded clinical trial of 439 adolescents with major depression found that a combination of medication and psychotherapy was the most effective treatment option.25Other NIMH–funded researchers are developing and testing ways to prevent suicide in children and adolescents, including early diagnosis and treatment, and a better understanding of suicidal thinking.

How is depression detected and treated?

Depression, even the most severe cases, is a highly treatable disorder. As with many illnesses, the earlier that treatment can begin, the more effective it is and the greater the likelihood that recurrence can be prevented.

The first step to getting appropriate treatment is to visit a doctor. Certain medications, and some medical conditions such as viruses or a thyroid disorder, can cause the same symptoms as depression. A doctor can rule out these possibilities by conducting a physical examination, interview and lab tests. If the doctor can eliminate a medical condition as a cause, he or she should conduct a psychological evaluation or refer the patient to a mental health professional.

The doctor or mental health professional will conduct a complete diagnostic evaluation. He or she should discuss any family history of depression, and get a complete history of symptoms, e.g., when they started, how long they have lasted, their severity, and whether they have occurred before and if so, how they were treated. He or she should also ask if the patient is using alcohol or drugs, and whether the patient is thinking about death or suicide.

Once diagnosed, a person with depression can be treated with a number of methods. The most common treatments are medication and psychotherapy.

Medication

Antidepressants work to normalize naturally occurring brain chemicals called neurotransmitters, notably serotonin and norepinephrine. Other antidepressants work on the neurotransmitter dopamine. Scientists studying depression have found that these particular chemicals are involved in regulating mood, but they are unsure of the exact ways in which they work.

The newest and most popular types of antidepressant medications are called selective serotonin reuptake inhibitors (SSRIs). SSRIs include fluoxetine (Prozac), citalopram (Celexa), sertraline (Zoloft) and several others. Serotonin and norepinephrine reuptake inhibitors (SNRIs) are similar to SSRIs and include venlafaxine (Effexor) and duloxetine (Cymbalta). SSRIs and SNRIs are more popular than the older classes of antidepressants, such as tricyclics–named for their chemical structure–and monoamine oxidase inhibitors (MAOIs) because they tend to have fewer side effects. However, medications affect everyone differently. No one–size–fits–all approach to medication exists. Therefore, for some people, tricyclics or MAOIs may be the best choice.

People taking MAOIs must adhere to significant food and medicinal restrictions to avoid potentially serious interactions. They must avoid certain foods that contain high levels of the chemical tyramine, which is found in many cheeses, wines and pickles, and some medications including decongestants. MAOIs interact with tyramine in such a way that may cause a sharp increase in blood pressure, which could lead to a stroke. A doctor should give a patient taking an MAOI a complete list of prohibited foods, medicines and substances.

For all classes of antidepressants, patients must take regular doses for at least three to four weeks before they are likely to experience a full therapeutic effect. They should continue taking the medication for the time specified by their doctor, even if they are feeling better, in order to prevent a relapse of the depression. Medication should be stopped only under a doctor's supervision. Some medications need to be gradually stopped to give the body time to adjust. Although antidepressants are not habit–forming or addictive, abruptly ending an antidepressant can cause withdrawal symptoms or lead to a relapse. Some individuals, such as those with chronic or recurrent depression, may need to stay on the medication indefinitely.

In addition, if one medication does not work, patients should be open to trying another. NIMH–funded research has shown that patients who did not get well after taking a first medication increased their chances of becoming symptom–free after they switched to a different medication or added another medication to their existing one.^26,27

Sometimes stimulants, anti–anxiety medications, or other medications are used in conjunction with an antidepressant, especially if the patient has a co–existing mental or physical disorder. However, neither anti–anxiety medications nor stimulants are effective against depression when taken alone, and both should be taken only under a doctor's close supervision.

What are the side effects of antidepressants?

Antidepressants may cause mild and often temporary side effects in some people, but they are usually not long–term. However, any unusual reactions or side effects that interfere with normal functioning should be reported to a doctor immediately.

The most common side effects associated with SSRIs and SNRIs include:

• Headache–usually temporary and will subside.
• Nausea–temporary and usually short–lived.
• Insomnia and nervousness (trouble falling asleep or waking often during the night)– may occur during the first few weeks but often subside over time or if the dose is reduced.
• Agitation (feeling jittery).
• Sexual problems–both men and women can experience sexual problems including reduced sex drive, erectile dysfunction, delayed ejaculation, or inability to have an orgasm.

Tricyclic antidepressants also can cause side effects including:

• Dry mouth - it is helpful to drink plenty of water, chew gum, and clean teeth daily.
• Constipation - it is helpful to eat more bran cereals, prunes, fruits, and vegetables.
• Bladder problems – emptying the bladder may be difficult, and the urine stream may not be as strong as usual. Older men with enlarged prostate conditions may be more affected. The doctor should be notified if it is painful to urinate.
• Sexual problems – sexual functioning may change, and side effects are similar to those from SSRIs.
• Blurred vision – often passes soon and usually will not require a new corrective lenses prescription.
• Drowsiness during the day–usually passes soon, but driving or operating heavy machinery should be avoided while drowsiness occurs. The more sedating antidepressants are generally taken at bedtime to help sleep and minimize daytime drowsiness.

FDA Warning on Antidepressants

Despite the relative safety and popularity of SSRIs and other antidepressants, some studies have suggested that they may have unintentional effects on some people, especially adolescents and young adults. In 2004, the Food and Drug Administration (FDA) conducted a thorough review of published and unpublished controlled clinical trials of antidepressants that involved nearly 4,400 children and adolescents. The review revealed that 4% of those taking antidepressants thought about or attempted suicide (although no suicides occurred), compared to 2% of those receiving placebos.

This information prompted the FDA, in 2005, to adopt a "black box" warning label on all antidepressant medications to alert the public about the potential increased risk of suicidal thinking or attempts in children and adolescents taking antidepressants. In 2007, the FDA proposed that makers of all antidepressant medications extend the warning to include young adults up through age 24. A "black box" warning is the most serious type of warning on prescription drug labeling.

The warning emphasizes that patients of all ages taking antidepressants should be closely monitored, especially during the initial weeks of treatment. Possible side effects to look for are worsening depression, suicidal thinking or behavior, or any unusual changes in behavior such as sleeplessness, agitation, or withdrawal from normal social situations. The warning adds that families and caregivers should also be told of the need for close monitoring and report any changes to the physician. The latest information from the FDA can be found on their Web site at www.fda.gov

Results of a comprehensive review of pediatric trials conducted between 1988 and 2006 suggested that the benefits of antidepressant medications likely outweigh their risks to children and adolescents with major depression and anxiety disorders.28 The study was funded in part by the National Institute of Mental Health.

Also, the FDA issued a warning that combining an SSRI or SNRI antidepressant with one of the commonly-used "triptan" medications for migraine headache could cause a life-threatening "serotonin syndrome," marked by agitation, hallucinations, elevated body temperature, and rapid changes in blood pressure. Although most dramatic in the case of the MAOIs, newer antidepressants may also be associated with potentially dangerous interactions with other medications.

What about St. John's wort?

The extract from St. John's wort (Hypericum perforatum), a bushy, wild-growing plant with yellow flowers, has been used for centuries in many folk and herbal remedies. Today in Europe, it is used extensively to treat mild to moderate depression. In the United States, it is one of the top-selling botanical products.

To address increasing American interests in St. John's wort, the National Institutes of Health conducted a clinical trial to determine the effectiveness of the herb in treating adults who have major depression. Involving 340 patients diagnosed with major depression, the eight-week trial randomly assigned one-third of them to a uniform dose of St. John's wort, one-third to a commonly prescribed SSRI, and one-third to a placebo. The trial found that St. John's wort was no more effective than the placebo in treating major depression.29 Another study is looking at the effectiveness of St. John's wort for treating mild or minor depression.

Other research has shown that St. John's wort can interact unfavorably with other medications, including those used to control HIV infection. On February 10, 2000, the FDA issued a Public Health Advisory letter stating that the herb appears to interfere with certain medications used to treat heart disease, depression, seizures, certain cancers, and organ transplant rejection. The herb also may interfere with the effectiveness of oral contraceptives. Because of these potential interactions, patients should always consult with their doctors before taking any herbal supplement.

Psychotherapy

Several types of psychotherapy – or "talk therapy" – can help people with depression.

Some regimens are short–term (10 to 20 weeks) and other regimens are longer–term, depending on the needs of the individual. Two main types of psychotherapies–cognitive–behavioral therapy (CBT) and interpersonal therapy (IPT)-have been shown to be effective in treating depression. By teaching new ways of thinking and behaving, CBT helps people change negative styles of thinking and behaving that may contribute to their depression. IPT helps people understand and work through troubled personal relationships that may cause their depression or make it worse.

For mild to moderate depression, psychotherapy may be the best treatment option. However, for major depression or for certain people, psychotherapy may not be enough. Studies have indicated that for adolescents, a combination of medication and psychotherapy may be the most effective approach to treating major depression and reducing the likelihood for recurrence.²⁵ Similarly, a study examining depression treatment among older adults found that patients who responded to initial treatment of medication and IPT were less likely to have recurring depression if they continued their combination treatment for at least two years.²¹

Electroconvulsive Therapy

For cases in which medication and/or psychotherapy does not help alleviate a person's treatment–resistant depression, electroconvulsive therapy (ECT) may be useful. ECT, formerly known as "shock therapy," once had a bad reputation. But in recent years, it has greatly improved and can provide relief for people with severe depression who have not been able to feel better with other treatments.

Before ECT is administered, a patient takes a muscle relaxant and is put under brief anesthesia. He or she does not consciously feel the electrical impulse administered in ECT. A patient typically will undergo ECT several times a week, and often will need to take an antidepressant or mood stabilizing medication to supplement the ECT treatments and prevent relapse. Although some patients will need only a few courses of ECT, others may need maintenance ECT, usually once a week at first, then gradually decreasing to monthly treatments for up to one year.

ECT may cause some short-term side effects, including confusion, disorientation and memory loss. But these side effects typically clear soon after treatment. Research has indicated that after one year of ECT treatments, patients showed no adverse cognitive effects.³⁰

What efforts are underway to improve treatment?

Researchers are looking for ways to better understand, diagnose and treat depression among all groups of people. New potential treatments are being tested that give hope to those who live with depression that is particularly difficult to treat, and researchers are studying the risk factors for depression and how it affects the brain. NIMH continues to fund cutting–edge research into this debilitating disorder.

For more information on NIMH-funded research on depression, visit the NIMH website.

How can I help a friend or relative who is depressed?

If you know someone who is depressed, it affects you too. The first and most important thing you can do to help a friend or relative who has depression is to help him or her get an appropriate diagnosis and treatment. You may need to make an appointment on behalf of your friend or relative and go with him or her to see the doctor. Encourage him or her to stay in treatment, or to seek different treatment if no improvement occurs after six to eight weeks.

To help a friend or relative:

• Offer emotional support, understanding, patience and encouragement.
• Engage your friend or relative in conversation, and listen carefully.
• Never disparage feelings your friend or relative expresses, but point out realities and offer hope.
• Never ignore comments about suicide, and report them to your friend's or relative's therapist or doctor.
• Invite your friend or relative out for walks, outings and other activities. Keep trying if he or she declines, but don't push him or her to take on too much too soon. Although diversions and company are needed, too many demands may increase feelings of failure.
• Remind your friend or relative that with time and treatment, the depression will lift.

How can I help myself if I am depressed?

If you have depression, you may feel exhausted, helpless and hopeless. It may be extremely difficult to take any action to help yourself. But it is important to realize that these feelings are part of the depression and do not accurately reflect actual circumstances. As you begin to recognize your depression and begin treatment, negative thinking will fade.

To help yourself:

• Engage in mild activity or exercise. Go to a movie, a ballgame, or another event or activity that you once enjoyed. Participate in religious, social or other activities.
• Set realistic goals for yourself.
• Break up large tasks into small ones, set some priorities and do what you can as you can.
• Try to spend time with other people and confide in a trusted friend or relative. Try not to isolate yourself, and let others help you.
• Expect your mood to improve gradually, not immediately. Do not expect to suddenly "snap out of" your depression. Often during treatment for depression, sleep and appetite will begin to improve before your depressed mood lifts.
• Postpone important decisions, such as getting married or divorced or changing jobs, until you feel better. Discuss decisions with others who know you well and have a more objective view of your situation.
• Remember that positive thinking will replace negative thoughts as your depression responds to treatment.

Where can I go for help?

If you are unsure where to go for help, ask your family doctor. Others who can help are listed below.

Mental Health Resources:

• Mental health specialists, such as psychiatrists, psychologists, social workers, or mental health counselors
• Health maintenance organizations
• Community mental health centers
• Hospital psychiatry departments and outpatient clinics
• Mental health programs at universities or medical schools
• State hospital outpatient clinics
• Family services, social agencies or clergy
• Peer support groups
• Private clinics and facilities
• Employee assistance programs
• Local medical and/or psychiatric societies
• You can also check the phone book under "mental health," "health," "social services," "hotlines," or "physicians" for phone numbers and addresses. An emergency room doctor also can provide temporary help and can tell you where and how to get further help.

What if I or someone I know is in crisis?

If you are thinking about harming yourself, or know someone who is, tell someone who can help immediately.

• Call your doctor.
• Call 911 or go to a hospital emergency room to get immediate help or ask a friend or family member to help you do these things.
• Call the toll-free, 24-hour hotline of the National Suicide Prevention Lifeline at 1-800-273-TALK (1-800-273-8255); TTY: 1-800-799-4TTY (4889) to talk to a trained counselor.
• Make sure you or the suicidal person is not left alone.

Citations

1. Altshuler LL, Hendrich V, Cohen LS. Course of mood and anxiety disorders during pregnancy and the postpartum period. Journal of Clinical Psychiatry, 1998; 59: 29.

2. Rohan KJ, Lindsey KT, Roecklein KA, Lacy TJ. Cognitive-behavioral therapy, light therapy and their combination in treating seasonal affective disorder. Journal of Affective Disorders, 2004; 80: 273-283.

3. Regier DA, Rae DS, Narrow WE, Kaebler CT, Schatzberg AF. Prevalence of anxiety disorders and their comorbidity with mood and addictive disorders. British Journal of Psychiatry, 1998; 173 (Suppl. 34): 24-28.

4. Devane CL, Chiao E, Franklin M, Kruep EJ. Anxiety disorders in the 21st century: status, challenges, opportunities, and comorbidity with depression. American Journal of Managed Care, 2005 Oct; 11(Suppl. 12): S344-353.

5. Shalev AY, Freedman S, Perry T, Brandes D, Sahar T, Orr SP, Pitman RK. Prospective study of posttraumatic stress disorder and depression following trauma. American Journal of Psychiatry, 1998; 155(5): 630-637.

6. Conway KP, ComptonW, Stinson FS, Grant BF. Lifetime comorbidity of DSM-IV mood and anxiety disorders and specific drug use disorders: results from the National Epidemiologic Survey on Alcohol and Related Conditions. Journal of Clinical Psychiatry, 2006 Feb; 67(2): 247-257.

7. Cassano P, Fava M. Depression and public health, an overview. Journal of Psychosomatic Research, 2002; 53: 849-857.

8. Katon W, Ciechanowski P. Impact of major depression on chronic medical illness. Journal of Psychosomatic Research, 2002; 53: 859-863.

9. Tsuang MT, Faraone SV. The genetics of mood disorders. Baltimore, MD: Johns Hopkins University Press, 1990.

10. Tsuang MT, Bar JL, Stone WS, Faraone SV. Gene-environment interactions in mental disorders. World Psychiatry, 2004 June; 3(2): 73-83.

11. Rubinow DR, Schmidt PJ, Roca CA. Estrogen-serotonin interactions: implications for affective regulation. Biological Psychiatry, 1998; 44(9): 839-850.

12. Pollack W. Mourning, melancholia and masculinity: recognizing and treating depression in men. In: Pollack W, Levant R, eds. New Psychotherapy for Men. New York: Wiley, 1998; 147-166.

13. Cochran SV, Rabinowitz FE. Men and Depression: clinical and empirical perspectives. San Diego: Academic Press, 2000.

14. Kochanek KD, Murphy SL, Anderson RN, Scott C. Deaths: final data for 2002. National Vital Statistics Reports; 53(5). Hyattsville, MD: National Center for Health Statistics, 2004.

15. Gallo JJ, Rabins PV. Depression without sadness: alternative presentations of depression in late life. American Family Physician, 1999; 60(3): 820-826.

16. Krishnan KRR, Taylor WD, et al. Clinical characteristics of magnetic resonance imaging-defined subcortical ischemic depression. Biological Psychiatry, 2004; 55: 390-397.

17. Conwell Y. Suicide in later life: a review and recommendations for prevention. Suicide and Life Threatening Behavior, 2001; 31(Suppl.): 32-47.

18. Little JT, Reynolds CF III, Dew MA, Frank E, Begley AE, Miller MD, Cornes C, Mazumdar S, Perel JM, Kupfer DJ. How common is resistance to treatment in recurrent, nonpsychotic geriatric depression? American Journal of Psychiatry, 1998; 155(8): 1035-1038.

19. Reynolds CF III, Frank E, Perel JM, Imber SD, Cornes C, Miller MD, Mazumdar S, Houck PR, Dew MA, Stack JA, Pollock BG, Kupfer DJ. Nortriptyline and interpersonal psychotherapy as maintenance therapies for recurrent major depression: a randomized controlled trial in patients older than 59 years. Journal of the American Medical Association, 1999; 281(1): 39-45.

20. Lebowitz BD, Pearson JL, Schneider LS, Reynolds CF, Alexopoulos GS, Bruce MI, Conwell Y, Katz IR, Meyers BS, Morrison MF, Mossey J, Niederehe G, Parmelee P. Diagnosis and treatment of depression in late life: consensus statement update. Journal of the American Medical Association, 1997; 278(14): 1186-1190.

21. Reynolds CF III, Dew MA, Pollock BG, Mulsant BH, Frank E, Miller MD, Houck PR, Mazumdar S, Butters MA, Stack JA, Schlernitzauer MA, Whyte EM, Gildengers A, Karp J, Lenze E, Szanto K, Bensasi S, Kupfer DJ. Maintenance treatment of major depression in old age. New England Journal of Medicine, 2006 Mar 16; 354(11): 1130-1138.

22. Weissman MM, Wolk S, Goldstein RB, Moreau D, Adams P, Greenwald S, Klier CM, Ryan ND, Dahl RE, Wichramaratne P. Depressed adolescents grown up. Journal of the American Medical Association, 1999; 281(18): 1701-1713.

23. Cyranowski JM, Frank E, Young E, Shear MK. Adolescent onset of the gender difference in lifetime rates of major depression. Archives of General Psychiatry, 2000; 57: 21-27.

24. Shaffer D, Gould MS, Fisher P, Trautman P, Moreau D, Kleinman M, Flory M. Psychiatric diagnosis in child and adolescent suicide. Archives of General Psychiatry, 1996; 53(4): 339-348.

25. March J, Silva S, Petrycki S, Curry J, Wells K, Fairbank J, Burns B, Domino M, McNulty S, Vitiello B, Severe J. Treatment for Adolescents with Depression Study (TADS) team. Fluoxetine, cognitive-behavioral therapy, and their combination for adolescents with depression: Treatment for Adolescents with Depression Study (TADS) randomized controlled trial. Journal of the American Medical Association, 2004; 292(7): 807-820.

26. Rush JA, Trivedi MH, Wisniewski SR, Stewart JW, Nierenberg AA, Thase ME, Ritz L, Biggs MM, Warden D, Luther JF, Shores-Wilson K, Niederehe G, Fava M. Bupropion-SR, Sertraline, or Venlafaxine-XR after failure of SSRIs for depression. New England Journal of Medicine, 2006 Mar 23; 354(12): 1231-1242.

27. Trivedi MH, Fava M, Wisniewski SR, Thase ME, Quitkin F, Warden D, Ritz L, Nierenberg AA, Lebowitz BD, Biggs MM, Luther JF, Shores-Wilson K, Rush JA. Medication augmentation after the failure of SSRIs for depression. New England Journal of Medicine, 2006 Mar 23; 354(12): 1243-1252.

28. Bridge JA, Iyengar S, Salary CB, Barbe RP, Birmaher B, Pincus HA, Ren L, Brent DA. Clinical response and risk for reported suicidal ideation and suicide attempts in pediatric antidepressant treatment, a meta-analysis of randomized controlled trials. Journal of the American Medical Association, 2007; 297(15): 1683-1696.

29. Hypericum Depression Trial Study Group. Effect of Hypericum perforatum (St. John's wort) in major depressive disorder: a randomized controlled trial. Journal of the American Medical Association, 2002; 287(14): 1807-1814.

30. Rami L, Bernardo M, Boget T, Ferrer J, Portella M, Gil-Verona JA, Salamero M. Cognitive status of psychiatric patients under maintenance electroconvulsive therapy: a one-year longitudinal study. The Journal of Neuropsychiatry and Clinical Neurosciences, 2004; 16: 465-471.

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Source: U.S. Department of Health and Human Services
National Institutes of Health
NIH publication No. 08 3561
Revised 2008
Page last reviewed by NIMH: September 23, 2010

Reviewed by athealth.com February 3, 2014

Introduction

Diabetes is one of the most serious health problems facing the world today. In the United States each year, more than 13,000 children are diagnosed with type 1 diabetes. Increasingly, health care providers are finding more and more children and teens with type 2 diabetes, a disease usually seen in people over age 40. Although there are no national data, some clinics report that one-third to one-half of all new cases of childhood diabetes are now type 2. African American, Hispanic/Latino and American Indian children who are obese and have a family history of type 2 diabetes are at especially high risk for this type of diabetes.

What is Diabetes?

Diabetes is a chronic disease in which the body does not make or properly use insulin, a hormone that is needed to convert sugar, starches, and other food into energy. People with diabetes have increased blood glucose (sugar) levels due to a lack of insulin, insufficient insulin, or resistance to insulin's effects. High levels of glucose build up in the blood, and spill into the urine and out of the body. As a result, the body loses its main source of fuel.

Taking care of diabetes is important. If not treated, diabetes can lead to serious problems. Diabetes can affect the eyes, kidneys, nerves, gums, teeth, and blood vessels. Diabetes is the leading cause of adult blindness, lower limb amputations, and kidney failure. It can cause heart disease and stroke, and even death if untreated. Some of these problems can occur in teens and young adults who develop diabetes during childhood. Research in adults shows that these problems can be greatly reduced or delayed by keeping blood glucose levels near normal.

What are Special Concerns for Children and Adolescents with Diabetes?

Diabetes presents unique issues for children and teens with the disease. Simple things - like going to a birthday party, playing sports, or staying overnight with friends - need careful planning. Every day, children with diabetes may need to take insulin or oral medication. They also need to check their blood glucose several times during the day and remember to make correct food choices. For school-age children, these tasks can make them feel "different" from their classmates. These tasks can be particularly bothersome for teens.

For any child or teen with diabetes, learning to cope with the disease is a big job. Dealing with a chronic illness such as diabetes may cause emotional and behavioral challenges. Talking to a social worker or psychologist may help a child or teen and his or her family learn to adjust to lifestyle changes needed to stay healthy.

What Can Families and Others Do?

Managing diabetes in children and adolescents is most effective when the entire family makes a team effort. Families can share concerns with physicians, diabetes educators, dietitians, and other health care providers to get their help in the day-to-day management of diabetes. Extended family members, teachers, school nurses, counselors, coaches, day care providers, or other resources in the community can provide information, support, guidance, and help with coping skills. These individuals also may help with resources for health education, financial services, social services, mental health counseling, transportation, and home visiting.

Diabetes is stressful for both the children and their families. Parents should be alert for signs of depression or eating disorders and seek appropriate treatment. While all parents should talk to their children about avoiding tobacco, alcohol, and other drugs, this is particularly important for children with diabetes. Smoking and diabetes each increase the risk of cardiovascular disease and people with diabetes who smoke have a greatly increased risk of heart disease and circulatory problems. Binge drinking can increase the risk of hypoglycemia (low blood sugar) and symptoms of hypoglycemia can be mistaken for those of intoxication and not properly treated. Local peer groups for children and teens with diabetes can provide positive role models and group activities.

What Are the Types of Diabetes?

There are two main types of diabetes. Type 1 and type 2 diabetes are described below. A third type-gestational diabetes-occurs only during pregnancy and often resolves after pregnancy. Women who have had gestational diabetes are more likely to develop type 2 diabetes later in life. (See "Resources" for information on gestational diabetes.)

Type 1 Diabetes

Type 1 diabetes is a disease of the immune system, which is the body's system for fighting infection. In people with type 1 diabetes, the immune system attacks the beta cells, the insulin-producing cells of the pancreas, and destroys them. The pancreas can no longer produce insulin, so people with type 1 diabetes need to take insulin daily to live. Type 1 diabetes can occur at any age, but the disease occurs most often in children and young adults.

• Symptoms. The symptoms of type 1 diabetes usually develop over a short period of time. They include increased thirst and urination, constant hunger, weight loss, and blurred vision. Children may also feel very tired all the time. If not diagnosed and treated with insulin, the child or teen with type 1 diabetes can lapse into a life-threatening diabetic coma, known as diabetic ketoacidosis (KEY-toe-asi-DOE-sis) or DKA.
• Risk Factors. Though scientists have made much progress in predicting who is at risk for developing type 1 diabetes, they do not know exactly what triggers the immune system's attack on beta cells. They believe that type 1 diabetes is due to a combination of genetic and environmental factors. Researchers are working to identify these factors and stop the auto-immune process that leads to type 1 diabetes.

Type 2 Diabetes

The first step in the development of type 2 diabetes is often a problem with the body's response to insulin, called insulin resistance. For reasons scientists do not completely understand, the body cannot use the insulin very well. This means that the body needs increasing amounts of insulin to control blood glucose. The pancreas tries to make more insulin, but after several years, insulin production may drop off.

Type 2 diabetes used to be found mainly in adults who were overweight and age 40 or older. Now, as more children and adolescents in the United States become overweight and inactive, type 2 diabetes occurs more often in young people. Type 2 diabetes is also more common in certain racial and ethnic groups, such as African Americans, American Indians, Hispanic/Latinos, and some Asian and Pacific Islander Americans. To control their diabetes, children with type 2 diabetes may need to take oral medication, insulin, or both.

• Symptoms. Type 2 diabetes develops slowly in some children, but quickly in others. Symptoms may be similar to those of type 1 diabetes. A child or teen can feel very tired, thirsty, or nauseated (sick to the stomach), and have to urinate often. Other symptoms may include weight loss, blurred vision, frequent infections, and slow healing of wounds or sores. Some children or adolescents with type 2 diabetes may show no symptoms at all when they are diagnosed. For that reason, it is important for parents and caregivers to talk to a health care provider about testing children or teens who are at high risk for the disease.
• Risk Factors. Being overweight, being older than 10 years of age, experiencing puberty, and having a family member who has type 2 diabetes are risk factors for the disease. Certain populations, as noted above, are at higher risk. In addition, physical signs of insulin resistance, such as acanthosis nigricans (A-can-tho-sis NIG-reh-cans), may appear: the skin around the neck or in the armpits appears dark, thick, and velvety. High blood pressure also may be a sign of insulin resistance. For children and teens at risk, health care providers can encourage, support, and educate the entire family to make lifestyle changes that may delay - or prevent - the onset of type 2 diabetes. Such lifestyle changes include keeping at a healthy weight and staying active.

What Should a Child or Teen With Diabetes Do Every Day?

To control diabetes and prevent complications, blood glucose levels must be as close to a "normal" range as safely possible. Families should work with a health care provider to help set a child's or teen's targets for blood glucose levels. (See for Resources information on target ranges.) The provider can help develop a personal diabetes plan for the child and discuss ways to manage hypoglycemia (low blood glucose) and hyperglycemia (high blood glucose).

A Personal Diabetes Plan

A personal diabetes plan ensures that a daily schedule is in place to keep a child's diabetes under control. A health care provider develops this plan in partnership with a child or teen and his or her family. The plan shows the child or teen how to follow a healthy meal plan, get regular physical activity, check blood glucose levels, and take insulin or oral medication as prescribed.

• Follow a Healthy Meal Plan. A child or teen needs to follow a meal plan developed by a physician, diabetes educator, or a registered dietitian. A meal plan outlines proper nutrition for growth. A meal plan also helps keep blood glucose levels in the target range. Children or adolescents and their families can learn how different types of food - especially carbohydrates such as breads, pasta, and rice - can affect blood glucose levels. Portion size, the right amount of calories for the child's age, and ideas for healthy food choices at meal and snack time also should be discussed. Family support for following the meal plan and setting up regular meal times is a key to success, especially if the child or teen is taking insulin.
• Get Regular Physical Activity. A child or teen with diabetes needs regular physical activity. Exercise helps to lower blood glucose levels, especially in children and adolescents with type 2 diabetes. Exercise is also a good way to help children control their weight. If possible, a child or teen should check blood glucose levels before beginning a game or sport. A child or teen should not exercise if blood glucose levels are too low.
• Check Blood Glucose Levels Regularly. A child or teen should check blood glucose levels regularly with a blood glucose meter, preferably a meter with a built-in memory. A health care professional can teach a child how to use a blood glucose meter properly and how often to use it. Blood glucose meter results show if blood glucose levels are in the target range, too high, or too low. A child should keep a journal or other records of blood glucose results to discuss with his or her health care provider. This information helps the provider make any needed changes to the child's or teen's personal diabetes plan.
• Take All Diabetes Medication As Prescribed. A child or teen should take all diabetes medication as prescribed. Parents, caregivers, school nurses, and others can help a child or teen learn how to take medications properly. For type 1 diabetes, a child or teen takes insulin shots at regular times each day. Some children and teens use an insulin pump, which delivers insulin. Some children or teens with type 2 diabetes need oral medication or insulin shots or both. In any case, all medication should be balanced with food and activity every day.

Hypoglycemia and Hyperglycemia

Keeping blood glucose levels within the target range is the goal of diabetes control. However, extremes in blood glucose levels can occur for several reasons. The parent or caregiver should talk with a health care provider about how to deal with these potential problems related to a child's or teen's diabetes.

• Blood glucose levels can sometimes drop too low - a condition called hypoglycemia (hi-po-gly-SEE-me-uh). Taking too much diabetes medicine, missing a meal or snack, or exercising too much may cause hypoglycemia. A child or teen can become nervous, shaky, and confused. When blood glucose levels fall very low, the person can lose consciousness or develop seizures. Talk to the child's or teen's health care provider about how to deal with this serious but manageable condition.
• Blood glucose levels can sometimes rise too high - a condition known as hyperglycemia (hi-per-gly-SEE-me-uh). Forgetting to take medicines on time, eating too much, and getting too little exercise may cause hyperglycemia. Being ill also can raise blood glucose levels. Over time, hyperglycemia can lead to serious health problems and cause damage to the eyes, kidneys, nerves, blood vessels, gums, and teeth.

Are There Legal Considerations for Children and Teens with Diabetes?

Several Federal and state laws provide protections to children with disabilities, including children or teens with diabetes. These children must have full access to public programs, including public schools, and to most private schools as well. Students with diabetes are entitled to accommodations and modifications necessary for them to stay healthy at school and have the same access to an education as other students do.

A child's or teen's school should prepare a plan that outlines how the child's special health care needs will be met. The plan should identify school staff responsible for making sure the plan is followed. The parents should be present during development of the plan. Any changes to the plan should be made only with the parents' consent. Ideally, the plan should be updated every year. For information or questions about the Americans With Disabilities Act, call 1-800-514-0301 or 1-800-514-0383 (TDD), or go to http://www.usdoj.gov/crt/ada/ on the World Wide Web.

Are Researchers Studying Diabetes in Children and Adolescents?

Diabetes and Digestive and Kidney Diseases (NIDDK) conducts and supports a wide range of research aimed at finding ways to prevent and treat diabetes and its health complications. The Institute's research on type 1 diabetes focuses on understanding its causes, improving treatment, and developing new therapies that could prevent or cure diabetes. In addition, NIDDK recently created Trialnet, a clinical trials network to test new ways to prevent type 1 diabetes and to preserve beta cell function in people who already have diabetes.

NIDDK is also setting up clinical centers to study the prevention and treatment of type 2 diabetes in children and adolescents. Treatment trials will look at lifestyle changes and drug therapy. Prevention trials will develop programs that can be used in schools and communities to lower risk factors for the disease. Other NIDDK-supported research on type 2 diabetes seeks to understand the causes of the disease, improve diagnosis, and develop new treatments. For more information about NIDDK research on children and adolescents with diabetes, visit http://www.niddk.nih.gov/patient/patient.htm on the Internet.

In 2000, the Centers for Disease Control and Prevention (CDC) began funding a 5-year multi-center study of childhood diabetes. Participating centers are located in California, Colorado, Hawaii, Ohio, South Carolina, and Washington. The goals of the program are to 1) develop population-based registries of childhood diabetes, 2) characterize the types of diabetes, 3) develop case definitions and study the prevalence and incidence of the different types of childhood diabetes, and 4) describe the natural history and the quality of care received during follow-up. For more information, call 1-877-232-3422 or visit http://www.cdc.gov/diabetes/projects/cda2.htm on the Internet.

NIDDK and CDC are joint sponsors of the National Diabetes Education Program (NDEP). The goal of this program is to reduce illness and death associated with diabetes and its complications. The NDEP has developed an initiative to help health care providers identify, diagnose, and treat children and teens with type 2 diabetes. In addition, the NDEP will launch an initiative to increase awareness in the school setting about the importance of helping children and teens with diabetes manage their disease.

Resources

For more information about diabetes, target goals for blood glucose levels, educational materials, and support programs for people with diabetes and their families and friends, contact:

National Diabetes Education Program (NDEP)
1 Diabetes Way
Bethesda, MD 20892-3600
Toll-free: 800-438-5383
Web site: http://www.ndep.nih.gov

For more information about type 1, type 2, and gestational diabetes, as well as diabetes research, statistics, and education, contact:

National Diabetes Information Clearinghouse
1 Information Way
Bethesda, MD 20892-3560
Toll-free: 800-860-8747
Phone: (301) 654-3327
Fax: (301) 907-8906
Email: [email protected]
Web site: http://www.niddk.nih.gov/health/diabetes/diabetes.htm

Centers for Disease Control and Prevention
National Center for Chronic Disease Prevention and Health Promotion
1600 Clifton Road
Atlanta, GA 30333
Toll-free: 800-311-3435
Phone: (404) 639-3311
Fax: (770) 448-5195
Web site: http://www.cdc.gov/nccdphp/index.htm

CDC Division of Diabetes Translation
Public Inquiries/Publications
P.O. Box 8728
Silver Spring, MD 20910
Toll-free: 877-CDC-DIAB or 877-232-3422
Fax: (301) 562-1050
Email: [email protected]
Web site: http://www.cdc.gov/diabetes

American Diabetes Association
1701 N. Beauregard Street
Alexandria, VA 22311
Toll-free: 800-DIABETES or 800-342-2383
Phone: (703) 549-1500
Email: [email protected]
Web site: http://www.diabetes.org

Juvenile Diabetes Foundation International
120 Wall Street, 19th Floor
New York, NY 10005
Toll-free: 800-223-1138
Phone: (212) 785-9500
Web site: http://www.jdf.org

Source: National Diabetes Education Program, National Institutes of Health, and the Centers for Disease Control and Prevention

Page last modified by athealth.com on February 3, 2014

What is autism spectrum disorder (ASD)?

Autism is a group of developmental brain disorders, collectively called autism spectrum disorder (ASD). The term "spectrum" refers to the wide range of symptoms, skills, and levels of impairment, or disability, that children with ASD can have. Some children are mildly impaired by their symptoms, but others are severely disabled.

ASD is diagnosed according to guidelines listed in the Diagnostic and Statistical Manual of Mental Disorders, Fourth Edition - Text Revision (DSM-IV-TR).¹ The manual currently defines five disorders, sometimes called pervasive developmental disorders (PDDs), as ASD:

• Autistic disorder (classic autism)
• Asperger's disorder (Asperger syndrome)
• Pervasive developmental disorder not otherwise specified (PDD-NOS)
• Rett's disorder (Rett syndrome)
• Childhood disintegrative disorder (CDD).

This information packet will focus on autism, Asperger syndrome, and PDD-NOS, with brief descriptions of Rett syndrome and CDD in the section, "Related disorders."

What are the symptoms of ASD?

Symptoms of autism spectrum disorder (ASD) vary from one child to the next, but in general, they fall into three areas:

• Social impairment
• Communication difficulties
• Repetitive and stereotyped behaviors

Children with ASD do not follow typical patterns when developing social and communication skills. Parents are usually the first to notice unusual behaviors in their child. Often, certain behaviors become more noticeable when comparing children of the same age.

In some cases, babies with ASD may seem different very early in their development. Even before their first birthday, some babies become overly focused on certain objects, rarely make eye contact, and fail to engage in typical back-and-forth play and babbling with their parents. Other children may develop normally until the second or even third year of life, but then start to lose interest in others and become silent, withdrawn, or indifferent to social signals. Loss or reversal of normal development is called regression and occurs in some children with ASD.²

Social impairment

Most children with ASD have trouble engaging in everyday social interactions. According to the Diagnostic and Statistical Manual of Mental Disorders, Fourth Edition - Text Revision, some children with ASD may:

• Make little eye contact
• Tend to look and listen less to people in their environment or fail to respond to other people
• Do not readily seek to share their enjoyment of toys or activities by pointing or showing things to others
• Respond unusually when others show anger, distress, or affection.

Recent research suggests that children with ASD do not respond to emotional cues in human social interactions because they may not pay attention to the social cues that others typically notice. For example, one study found that children with ASD focus on the mouth of the person speaking to them instead of on the eyes, which is where children with typical development tend to focus.³ A related study showed that children with ASD appear to be drawn to repetitive movements linked to a sound, such as hand-clapping during a game of pat-a-cake.⁴ More research is needed to confirm these findings, but such studies suggest that children with ASD may misread or not notice subtle social cues - a smile, a wink, or a grimace - that could help them understand social relationships and interactions. For these children, a question such as, "Can you wait a minute?" always means the same thing, whether the speaker is joking, asking a real question, or issuing a firm request. Without the ability to interpret another person's tone of voice as well as gestures, facial expressions, and other nonverbal communications, children with ASD may not properly respond.

Likewise, it can be hard for others to understand the body language of children with ASD. Their facial expressions, movements, and gestures are often vague or do not match what they are saying. Their tone of voice may not reflect their actual feelings either. Many older children with ASD speak with an unusual tone of voice and may sound sing-song or flat and robotlike.¹

Children with ASD also may have trouble understanding another person's point of view. For example, by school age, most children understand that other people have different information, feelings, and goals than they have. Children with ASD may lack this understanding, leaving them unable to predict or understand other people's actions.

Communication issues

According to the American Academy of Pediatrics' developmental milestones, by the first birthday, typical toddlers can say one or two words, turn when they hear their name, and point when they want a toy. When offered something they do not want, toddlers make it clear with words, gestures, or facial expressions that the answer is "no."

For children with ASD, reaching such milestones may not be so straightforward. For example, some children with autism may:

• Fail or be slow to respond to their name or other verbal attempts to gain their attention
• Fail or be slow to develop gestures, such as pointing and showing things to others
• Coo and babble in the first year of life, but then stop doing so
• Develop language at a delayed pace
• Learn to communicate using pictures or their own sign language
• Speak only in single words or repeat certain phrases over and over, seeming unable to combine words into meaningful sentences
• Repeat words or phrases that they hear, a condition called echolalia
• Use words that seem odd, out of place, or have a special meaning known only to those familiar with the child's way of communicating.

Even children with ASD who have relatively good language skills often have difficulties with the back and forth of conversations. For example, because they find it difficult to understand and react to social cues, children with Asperger syndrome often talk at length about a favorite subject, but they won't allow anyone else a chance to respond or notice when others react indifferently.¹

Children with ASD who have not yet developed meaningful gestures or language may simply scream or grab or otherwise act out until they are taught better ways to express their needs. As these children grow up, they can become aware of their difficulty in understanding others and in being understood. This awareness may cause them to become anxious or depressed. For more information on mental health issues in children with ASD, see the section: What are some other conditions that children with ASD may have?

Repetitive and stereotyped behaviors

Children with ASD often have repetitive motions or unusual behaviors. These behaviors may be extreme and very noticeable, or they can be mild and discreet. For example, some children may repeatedly flap their arms or walk in specific patterns, while others may subtly move their fingers by their eyes in what looks to be a gesture. These repetitive actions are sometimes called "stereotypy" or "stereotyped behaviors."

Children with ASD also tend to have overly focused interests. Children with ASD may become fascinated with moving objects or parts of objects, like the wheels on a moving car. They might spend a long time lining up toys in a certain way, rather than playing with them. They may also become very upset if someone accidentally moves one of the toys. Repetitive behavior can also take the form of a persistent, intense preoccupation.1 For example, they might be obsessed with learning all about vacuum cleaners, train schedules, or lighthouses. Children with ASD often have great interest in numbers, symbols, or science topics.

While children with ASD often do best with routine in their daily activities and surroundings, inflexibility may often be extreme and cause serious difficulties. They may insist on eating the same exact meals every day or taking the same exact route to school. A slight change in a specific routine can be extremely upsetting.¹ Some children may even have emotional outbursts, especially when feeling angry or frustrated or when placed in a new or stimulating environment.

No two children express exactly the same types and severity of symptoms. In fact, many typically developing children occasionally display some of the behaviors common to children with ASD. However, if you notice your child has several ASD-related symptoms, have your child screened and evaluated by a health professional experienced with ASD.

Related Disorders

Rett syndrome and childhood disintegrative disorder (CDD) are two very rare forms of ASD that include a regression in development. Only 1 of every 10,000 to 22,000 girls has Rett syndrome.^5,6 Even rarer, only 1 or 2 out of 100,000 children with ASD have CDD.⁷

Unlike other forms of ASD, Rett syndrome mostly affects girls. In general, children with Rett syndrome develop normally for 6-18 months before regression and autism-like symptoms begin to appear. Children with Rett syndrome may also have difficulties with coordination, movement, and speech. Physical, occupational, and speech therapy can help, but no specific treatment for Rett syndrome is available yet.

With funding from the Eunice Kennedy Shriver National Institute of Child Health and Human Development, scientists have discovered that a mutation in the sequence of a single gene is linked to most cases of Rett syndrome.⁸ This discovery may help scientists find ways to slow or stop the progress of the disorder. It may also improve doctors' ability to diagnose and treat children with Rett syndrome earlier, improving their overall quality of life.

CDD affects very few children, which makes it hard for researchers to learn about the disease. Symptoms of CDD may appear by age 2, but the average age of onset is between age 3 and 4. Until this time, children with CDD usually have age-appropriate communication and social skills. The long period of normal development before regression helps to set CDD apart from Rett syndrome. CDD may affect boys more often than girls.⁹

Children with CDD experience severe, wide-ranging and obvious loss of previously-obtained motor, language, and social skills.¹⁰ The loss of such skills as vocabulary is more dramatic in CDD than in classic autism.¹¹ Other symptoms of CDD include loss of bowel and bladder control.¹

How is ASD diagnosed?

ASD diagnosis is often a two-stage process. The first stage involves general developmental screening during well-child checkups with a pediatrician or an early childhood health care provider. Children who show some developmental problems are referred for additional evaluation. The second stage involves a thorough evaluation by a team of doctors and other health professionals with a wide range of specialities.¹² At this stage, a child may be diagnosed as having autism or another developmental disorder.

Children with autism spectrum disorder (ASD) can usually be reliably diagnosed by age 2, though research suggests that some screening tests can be helpful at 18 months or even younger.^12,13

Many people - including pediatricians, family doctors, teachers, and parents - may minimize signs of ASD at first, believing that children will "catch up" with their peers. While you may be concerned about labeling your young child with ASD, the earlier the disorder is diagnosed, the sooner specific interventions may begin. Early intervention can reduce or prevent the more severe disabilities associated with ASD. Early intervention may also improve your child's IQ, language, and everyday functional skills, also called adaptive behavior.¹⁴

Screening

A well-child checkup should include a developmental screening test, with specific ASD screening at 18 and 24 months as recommended by the American Academy of Pediatrics.¹⁴ Screening for ASD is not the same as diagnosing ASD. Screening instruments are used as a first step to tell the doctor whether a child needs more testing. If your child's pediatrician does not routinely screen your child for ASD, ask that it be done.

For parents, your own experiences and concerns about your child's development will be very important in the screening process. Keep your own notes about your child's development and look through family videos, photos, and baby albums to help you remember when you first noticed each behavior and when your child reached certain developmental milestones.

Types of ASD screening instruments

Sometimes the doctor will ask parents questions about the child's symptoms to screen for ASD. Other screening instruments combine information from parents with the doctor's own observations of the child. Examples of screening instruments for toddlers and preschoolers include:

• Checklist of Autism in Toddlers (CHAT)
• Modified Checklist for Autism in Toddlers (M-CHAT)
• Screening Tool for Autism in Two-Year-Olds (STAT)
• Social Communication Questionnaire (SCQ)
• Communication and Symbolic Behavior Scales (CSBS).

To screen for mild ASD or Asperger syndrome in older children, the doctor may rely on different screening instruments, such as:

• Autism Spectrum Screening Questionnaire (ASSQ)
• Australian Scale for Asperger's Syndrome (ASAS)
• Childhood Asperger Syndrome Test (CAST).

Some helpful resources on ASD screening include the Center for Disease Control and Prevention's General Developmental Screening tools and ASD Specific Screening tools on their website.

Comprehensive diagnostic evaluation

The second stage of diagnosis must be thorough in order to find whether other conditions may be causing your child's symptoms. For more information, see the section: What are some other conditions that children with ASD may have?

A team that includes a psychologist, a neurologist, a psychiatrist, a speech therapist, or other professionals experienced in diagnosing ASD may do this evaluation. The evaluation may assess the child's cognitive level (thinking skills), language level, and adaptive behavior (age-appropriate skills needed to complete daily activities independently, for example eating, dressing, and toileting).

Because ASD is a complex disorder that sometimes occurs along with other illnesses or learning disorders, the comprehensive evaluation may include brain imaging and gene tests, along with in-depth memory, problem-solving, and language testing.¹² Children with any delayed development should also get a hearing test and be screened for lead poisoning as part of the comprehensive evaluation.

Although children can lose their hearing along with developing ASD, common ASD symptoms (such as not turning to face a person calling their name) can also make it seem that children cannot hear when in fact they can. If a child is not responding to speech, especially to his or her name, it's important for the doctor to test whether a child has hearing loss.

The evaluation process is a good time for parents and caregivers to ask questions and get advice from the whole evaluation team. The outcome of the evaluation will help plan for treatment and interventions to help your child. Be sure to ask who you can contact with follow-up questions.

What are some other conditions that children with ASD may have?

Sensory problems

Many children with autism spectrum disorder (ASD) either overreact or underreact to certain sights, sounds, smells, textures, and tastes. For example, some may:

• Dislike or show discomfort from a light touch or the feel of clothes on their skin
• Experience pain from certain sounds, like a vacuum cleaner, a ringing telephone, or a sudden storm; sometimes they will cover their ears and scream
• Have no reaction to intense cold or pain.

Researchers are trying to determine if these unusual reactions are related to differences in integrating multiple types of information from the senses.

Sleep problems

Children with ASD tend to have problems falling asleep or staying asleep, or have other sleep problems.¹⁵ These problems make it harder for them to pay attention, reduce their ability to function, and lead to poor behavior. In addition, parents of children with ASD and sleep problems tend to report greater family stress and poorer overall health among themselves.

Fortunately, sleep problems can often be treated with changes in behavior, such as following a sleep schedule or creating a bedtime routine. Some children may sleep better using medications such as melatonin, which is a hormone that helps regulate the body's sleep-wake cycle. Like any medication, melatonin can have unwanted side effects. Talk to your child's doctor about possible risks and benefits before giving your child melatonin. Treating sleep problems in children with ASD may improve the child's overall behavior and functioning, as well as relieve family stress.¹⁶

Intellectual disability

Many children with ASD have some degree of intellectual disability. When tested, some areas of ability may be normal, while others - especially cognitive (thinking) and language abilities - may be relatively weak. For example, a child with ASD may do well on tasks related to sight (such as putting a puzzle together) but may not do as well on language-based problem-solving tasks. Children with a form of ASD like Asperger syndrome often have average or above-average language skills and do not show delays in cognitive ability or speech.

Seizures

One in four children with ASD has seizures, often starting either in early childhood or during the teen years.¹⁷ Seizures, caused by abnormal electrical activity in the brain, can result in

• A short-term loss of consciousness, or a blackout
• Convulsions, which are uncontrollable shaking of the whole body, or unusual movements
• Staring spells.

Sometimes lack of sleep or a high fever can trigger a seizure. An electroencephalogram (EEG), a nonsurgical test that records electrical activity in the brain, can help confirm whether a child is having seizures. However, some children with ASD have abnormal EEGs even if they are not having seizures.

Seizures can be treated with medicines called anticonvulsants. Some seizure medicines affect behavior; changes in behavior should be closely watched in children with ASD. In most cases, a doctor will use the lowest dose of medicine that works for the child. Anticonvulsants usually reduce the number of seizures but may not prevent all of them.

For more information about medications, see the NIMH online booklet, "Medications". None of these medications have been approved by the FDA to specifically treat symptoms of ASD.

Fragile X syndrome

Fragile X syndrome is a genetic disorder and is the most common form of inherited intellectual disability,¹⁸ causing symptoms similar to ASD. The name refers to one part of the X chromosome that has a defective piece that appears pinched and fragile when viewed with a microscope. Fragile X syndrome results from a change, called a mutation, on a single gene. This mutation, in effect, turns off the gene. Some people may have only a small mutation and not show any symptoms, while others have a larger mutation and more severe symptoms.¹⁹

Around 1 in 3 children who have Fragile X syndrome also meet the diagnostic criteria for ASD, and about 1 in 25 children diagnosed with ASD have the mutation that causes Fragile X syndrome.¹⁹

Because this disorder is inherited, children with ASD should be checked for Fragile X, especially if the parents want to have more children. Other family members who are planning to have children may also want to be checked for Fragile X syndrome. For more information on Fragile X, see the Eunice Kennedy Shriver National Institute of Child Health and Human Development website.

Tuberous sclerosis

Tuberous sclerosis is a rare genetic disorder that causes noncancerous tumors to grow in the brain and other vital organs. Tuberous sclerosis occurs in 1 to 4 percent of people with ASD.^18,20 A genetic mutation causes the disorder, which has also been linked to mental retardation, epilepsy, and many other physical and mental health problems. There is no cure for tuberous sclerosis, but many symptoms can be treated.

Gastrointestinal problems

Some parents of children with ASD report that their child has frequent gastrointestinal (GI) or digestion problems, including stomach pain, diarrhea, constipation, acid reflux, vomiting, or bloating. Food allergies may also cause problems for children with ASD.²¹ It's unclear whether children with ASD are more likely to have GI problems than typically developing children.^22,23 If your child has GI problems, a doctor who specializes in GI problems, called a gastroenterologist, can help find the cause and suggest appropriate treatment.

Some studies have reported that children with ASD seem to have more GI symptoms, but these findings may not apply to all children with ASD. For example, a recent study found that children with ASD in Minnesota were more likely to have physical and behavioral difficulties related to diet (for example, lactose intolerance or insisting on certain foods), as well as constipation, than children without ASD.²³ The researchers suggested that children with ASD may not have underlying GI problems, but that their behavior may create GI symptoms - for example, a child who insists on eating only certain foods may not get enough fiber or fluids in his or her diet, which leads to constipation.

Some parents may try to put their child on a special diet to control ASD or GI symptoms. While some children may benefit from limiting certain foods, there is no strong evidence that these special diets reduce ASD symptoms.²⁴ If you want to try a special diet, first talk with a doctor or a nutrition expert to make sure your child's nutritional needs are being met.

Co-occurring mental disorders

Children with ASD can also develop mental disorders such as anxiety disorders, attention deficit hyperactivity disorder (ADHD), or depression. Research shows that people with ASD are at higher risk for some mental disorders than people without ASD.²⁵ Managing these co-occurring conditions with medications or behavioral therapy, which teaches children how to control their behavior, can reduce symptoms that appear to worsen a child's ASD symptoms. Controlling these conditions will allow children with ASD to focus more on managing the ASD.²⁶

How is ASD treated?

While there's no proven cure yet for autism spectrum disorder (ASD), treating ASD early, using school-based programs, and getting proper medical care can greatly reduce ASD symptoms and increase your child's ability to grow and learn new skills.

Early Intervention

Research has shown that intensive behavioral therapy during the toddler or preschool years can significantly improve cognitive and language skills in young children with ASD.^27,28 There is no single best treatment for all children with ASD, but the American Academy of Pediatrics recently noted common features of effective early intervention programs.²⁹ These include:

• Starting as soon as a child has been diagnosed with ASD
• Providing focused and challenging learning activities at the proper developmental level for the child for at least 25 hours per week and 12 months per year
• Having small classes to allow each child to have one-on-one time with the therapist or teacher and small group learning activities
• Having special training for parents and family
• Encouraging activities that include typically developing children, as long as such activities help meet a specific learning goal
• Measuring and recording each child's progress and adjusting the intervention program as needed
• Providing a high degree of structure, routine, and visual cues, such as posted activity schedules and clearly defined boundaries, to reduce distractions
• Guiding the child in adapting learned skills to new situations and settings and maintaining learned skills
• Using a curriculum that focuses on
  • Language and communication
  • Social skills, such as joint attention (looking at other people to draw attention to something interesting and share in experiencing it)
  • Self-help and daily living skills, such as dressing and grooming
  • Research-based methods to reduce challenging behaviors, such as aggression and tantrums
  • Cognitive skills, such as pretend play or seeing someone else's point of view
  • Typical school-readiness skills, such as letter recognition and counting.

One type of a widely accepted treatment is applied behavior analysis (ABA). The goals of ABA are to shape and reinforce new behaviors, such as learning to speak and play, and reduce undesirable ones. ABA, which can involve intensive, one-on-one child-teacher interaction for up to 40 hours a week, has inspired the development of other, similar interventions that aim to help those with ASD reach their full potential.^30,31 ABA-based interventions include:

• Verbal Behavior - focuses on teaching language using a sequenced curriculum that guides children from simple verbal behaviors (echoing) to more functional communication skills through techniques such as errorless teaching and
• Pivotal Response Training - aims at identifying pivotal skills, such as initiation and self-management, that affect a broad range of behavioral responses. This intervention incorporates parent and family education aimed at providing skills that enable the child to function in inclusive settings.^33,34

Other types of early interventions include:

• Developmental, Individual Difference, Relationship-based(DIR)/Floortime Model - aims to build healthy and meaningful relationships and abilities by following the natural emotions and interests of the child.³⁵ One particular example is the Early Start Denver Model, which fosters improvements in communication, thinking, language, and other social skills and seeks to reduce atypical behaviors. Using developmental and relationship-based approaches, this therapy can be delivered in natural settings such as the home or pre-school.^33,34
• TEACCH (Treatment and Education of Autistic and related Communication handicapped Children) - emphasizes adapting the child's physical environment and using visual cues (for example, having classroom materials clearly marked and located so that students can access them independently). Using individualized plans for each student, TEACCH builds on the child's strengths and emerging skills.^34,36
• Interpersonal Synchrony - targets social development and imitation skills, and focuses on teaching children how to establish and maintain engagement with others.

For children younger than age 3, these interventions usually take place at home or in a child care center. Because parents are a child's earliest teachers, more programs are beginning to train parents to continue the therapy at home.

Students with ASD may benefit from some type of social skills training program.³⁷ While these programs need more research, they generally seek to increase and improve skills necessary for creating positive social interactions and avoiding negative responses. For example, Children's Friendship Training focuses on improving children's conversation and interaction skills and teaches them how to make friends, be a good sport, and respond appropriately to teasing.³⁸

Working with your child's school

Start by speaking with your child's teacher, school counselor, or the school's student support team to begin an evaluation. Each state has a Parent Training and Information Center and a Protection and Advocacy Agency that can help you get an evaluation. A team of professionals conducts the evaluation using a variety of tools and measures. The evaluation will look at all areas related to your child's abilities and needs.

Once your child has been evaluated, he or she has several options, depending on the specific needs. If your child needs special education services and is eligible under the Individuals with Disabilities Education Act (IDEA), the school district (or the government agency administering the program) must develop an individualized education plan, or IEP specifically for your child within 30 days.

IDEA provides free screenings and early intervention services to children from birth to age 3. IDEA also provides special education and related services from ages 3 to 21. Information is available from the U.S. Department of Education.

If your child is not eligible for special education services - not all children with ASD are eligible - he or she can still get free public education suited to his or her needs, which is available to all public-school children with disabilities under Section 504 of the Rehabilitation Act of 1973, regardless of the type or severity of the disability.

The U.S. Department of Education's Office for Civil Rights enforces Section 504 in programs and activities that receive Federal education funds. More information on Section 504 is available on the Department of Education website.

More information about U.S. Department of Education programs for children with disabilities is available on their website.

During middle and high school years, your child's teachers will begin to discuss practical issues such as work, living away from a parent or caregiver's home, and hobbies. These lessons should include gaining work experience, using public transportation, and learning skills that will be important in community living.²⁹

Medications

Some medications can help reduce symptoms that cause problems for your child in school or at home. Many other medications may be prescribed off-label, meaning they have not been approved by the U.S. Food and Drug Administration (FDA) for a certain use or for certain people. Doctors may prescribe medications off-label if they have been approved to treat other disorders that have similar symptoms to ASD, or if they have been effective in treating adults or older children with ASD. Doctors prescribe medications off-label to try to help the youngest patients, but more research is needed to be sure that these medicines are safe and effective for children and teens with ASD.

At this time, the only medications approved by the FDA to treat aspects of ASD are the antipsychotics risperidone (Risperdal) and aripripazole (Abilify). These medications can help reduce irritability—meaning aggression, self-harming acts, or temper tantrums—in children ages 5 to 16 who have ASD.

Some medications that may be prescribed off-label for children with ASD include the following:

Antipsychotic medications are more commonly used to treat serious mental illnesses such as schizophrenia. These medicines may help reduce aggression and other serious behavioral problems in children, including children with ASD. They may also help reduce repetitive behaviors, hyperactivity, and attention problems.²⁹

Antidepressant medications, such as fluoxetine (Prozac) or sertraline (Zoloft), are usually prescribed to treat depression and anxiety but are sometimes prescribed to reduce repetitive behaviors. Some antidepressants may also help control aggression and anxiety in children with ASD.²⁹ However, researchers still are not sure if these medications are useful; a recent study suggested that the antidepressant citalopram (Celexa) was no more effective than a placebo (sugar pill) at reducing repetitive behaviors in children with ASD.³⁹

Stimulant medications, such as methylphenidate (Ritalin), are safe and effective in treating people with attention deficit hyperactivity disorder (ADHD). Methylphenidate has been shown to effectively treat hyperactivity in children with ASD as well. But not as many children with ASD respond to treatment, and those who do have shown more side effects than children with ADHD and not ASD.⁴⁰

All medications carry a risk of side effects. For details on the side effects of common psychiatric medications, see the NIMH website on "Medications".

FDA warning about antidepressants

Antidepressants are safe and popular, but some studies have suggested that they may have unintended effects on some people, especially in teens and young adults. The FDA warning says that patients of all ages taking antidepressants should be watched closely, especially during the first few weeks of treatment. Possible side effects to look for are depression that gets worse, suicidal thinking or behavior, or any unusual changes in behavior such as trouble sleeping, agitation, or withdrawal from normal social situations. Families and caregivers should report any changes to the doctor. The latest information is available on the FDA website.

A child with ASD may not respond in the same way to medications as typically developing children. You should work with a doctor who has experience treating children with ASD. The doctor will usually start your child on the lowest dose that helps control problem symptoms. Ask the doctor about any side effects of the medication and keep a record of how your child reacts to the medication. The doctor should regularly check your child's response to the treatment.

You have many options for treating your child's ASD. However, not all of them have been proven to work through scientific studies. Read the patient information that comes with your child's medication. Some people keep these patient inserts along with their other notes for easy reference. This is most useful when dealing with several different prescription medications. You should get all the facts about possible risks and benefits and talk to more than one expert when possible before trying a new treatment on your child.

How common is ASD?

Studies measuring autism spectrum disorder (ASD) prevalence—the number of children affected by ASD over a given time period—have reported varying results, depending on when and where the studies were conducted and how the studies defined ASD.

In a 2009 government survey on ASD prevalence, the Centers for Disease Control and Prevention (CDC) found that the rate of ASD was higher than in past U.S. studies. Based on health and school records of 8-year-olds in 14 communities throughout the country, the CDC survey found that around 1 in 110 children has ASD.⁴¹ Boys face about four to five times higher risk than girls.

Experts disagree about whether this shows a true increase in ASD prevalence. Since the earlier studies were completed, guidelines for diagnosis have changed. Also, many more parents and doctors now know about ASD, so parents are more likely to take their children to be diagnosed, and more doctors are able to properly diagnose ASD. These and other changes may help explain some differences in prevalence numbers. Even so, the CDC report confirms other recent studies showing that more children are being diagnosed with ASD than ever before. For more information, please visit the autism section of the CDC website.

What causes ASD?

Scientists don't know the exact causes of autism spectrum disorder (ASD), but research suggests that both genes and environment play important roles.

Genetic factors

In identical twins who share the exact same genetic code, if one has ASD, the other twin also has ASD in nearly 9 out of 10 cases. If one sibling has ASD, the other siblings have 35 times the normal risk of also developing the disorder. Researchers are starting to identify particular genes that may increase the risk for ASD.^42,43

Still, scientists have only had some success in finding exactly which genes are involved. For more information about such cases, see the section, "What are some other conditions that children with ASD may also have?" which describes Fragile X syndrome and tuberous sclerosis.

Most people who develop ASD have no reported family history of autism, suggesting that random, rare, and possibly many gene mutations are likely to affect a person's risk.^44,45 Any change to normal genetic information is called a mutation. Mutations can be inherited, but some arise for no reason. Mutations can be helpful, harmful, or have no effect.

Having increased genetic risk does not mean a child will definitely develop ASD. Many researchers are focusing on how various genes interact with each other and environmental factors to better understand how they increase the risk of this disorder.

Environmental factors

In medicine, "environment" refers to anything outside of the body that can affect health. This includes the air we breathe, the water we drink and bathe in, the food we eat, the medicines we take, and many other things that our bodies may come in contact with. Environment also includes our surroundings in the womb, when our mother's health directly affects our growth and earliest development.

Researchers are studying many environmental factors such as family medical conditions, parental age and other demographic factors, exposure to toxins, and complications during birth or pregnancy.^29,46-48

As with genes, it's likely that more than one environmental factor is involved in increasing risk for ASD. And, like genes, any one of these risk factors raises the risk by only a small amount. Most people who have been exposed to environmental risk factors do not develop ASD. The National Institute of Environmental Health Sciences is also conducting research in this area. More information is available on their website.

Scientists are studying how certain environmental factors may affect certain genes—turning them on or off, or increasing or decreasing their normal activity. This process is called epigenetics and is providing researchers with many new ways to study how disorders like ASD develop and possibly change over time.

ASD and vaccines

Health experts recommend that children receive a number of vaccines early in life to protect against dangerous, infectious diseases, such as measles. Since pediatricians in the United States started giving these vaccines during regular checkups, the number of children getting sick, becoming disabled, or dying from these diseases has dropped to almost zero.

Children in the United States receive several vaccines during their first 2 years of life, around the same age that ASD symptoms often appear or become noticeable. A minority of parents suspect that vaccines are somehow related to their child's disorder. Some may be concerned about these vaccines due to the unproven theory that ASD may be caused by thimerosal. Thimerosal is a mercury-based chemical once added to some, but not all, vaccines to help extend their shelf life. However, except for some flu vaccines, no vaccine routinely given to preschool aged children in the United States has contained thimerosal since 2001. Despite this change, the rate of children diagnosed with ASD has continued to rise.

Other parents believe their child's illness might be linked to vaccines designed to protect against more than one disease, such as the measles-mumps-rubella (MMR) vaccine, which never contained thimerosal.

Many studies have been conducted to try to determine if vaccines are a possible cause of autism. As of 2010, none of the studies has linked autism and vaccines.^49,50

Following extensive hearings, a special court of Federal judges ruled against several test cases that tried to prove that vaccines containing thimerosal, either by themselves or combined with the MMR vaccine, caused autism. More information about these hearings is available on the U.S. Court of Federal Claims' website.

The latest information about research on autism and vaccines is available from the Centers for Disease Control and Prevention. This website provides information from the Federal Government and independent organizations.

What efforts are under way to improve the detection and treatment of ASD?

Many recent research studies have focused on finding the earliest signs of autism spectrum disorder (ASD). These studies aim to help doctors diagnose children at a younger age so they can get needed interventions as quickly as possible.

For example, one early sign of ASD may be increased head size or rapid head growth. Brain imaging studies have shown that abnormal brain development beginning in an infant's first months may have a role in ASD. This theory suggests that genetic defects in growth factors, which direct proper brain development, cause the brain abnormalities seen in autism. It's possible that an infant's sudden, rapid head growth may be an early warning signal, which could help in early diagnosis and treatment or possible prevention of ASD.⁵¹

Current studies on ASD treatment are exploring many approaches, such as:

• A computer-based training program designed to teach children with ASD how to create and respond to facial expressions appropriately52
• A medication that may help improve functioning in children with Fragile X syndrome⁵³
• New social interventions that can be used in the classroom or other "everyday" settings
• An intervention parents can follow to reduce and prevent ASD-related disability in children at high risk for the disorder.54
• More information about clinical trials on ASD funded by the National Institute of Mental Health is available on the website.

How can I help a child who has ASD?

After your child is diagnosed with autism spectrum disorder (ASD), you may feel unprepared or unable to provide your child with the necessary care and education. Know that there are many treatment options, social services and programs, and other resources that can help.

Some tips that can help you and your child are:

• Keep a record of conversations, meetings with health care providers and teachers, and other sources of information. This will help you remember the different treatment options and decide which would help your child most.
• Keep a record of the doctors' reports and your child's evaluation. This information may help your child qualify for special programs.
• Contact your local health department or autism advocacy groups to learn about the special programs available in your state and local community.
• Talk with your child's pediatrician, school system, or an autism support group to find an autism expert in your area who can help you develop an intervention plan and find other local resources.

Understanding teens with ASD

The teen years can be a time of stress and confusion for any growing child, including teenagers with autism spectrum disorder (ASD).

During the teenage years, adolescents become more aware of other people and their relationships with them. While most teenagers are concerned with acne, popularity, grades, and dates, teens with ASD may become painfully aware that they are different from their peers. For some, this awareness may encourage them to learn new behaviors and try to improve their social skills. For others, hurt feelings and problems connecting with others may lead to depression, anxiety, or other mental disorders. One way that some teens with ASD may express the tension and confusion that can occur during adolescence is through increased autistic or aggressive behavior. Teens with ASD will also need support to help them understand the physical changes and sexual maturation they experience during adolescence.

If your teen seems to have trouble coping, talk with his or her doctor about possible co-occurring mental disorders and what you can do. Behavioral therapies and medications often help.

Preparing for your child's transition to adulthood

The public schools' responsibility for providing services ends when a child with ASD reaches the age of 22. At that time, some families may struggle to find jobs to match their adult child's needs. If your family cannot continue caring for an adult child at home, you may need to look for other living arrangements. For more information, see the section, "Living arrangements for adults with ASD."

Long before your child finishes school, you should search for the best programs and facilities for young adults with ASD. If you know other parents of adults with ASD, ask them about the services available in your community. Local support and advocacy groups may be able to help you find programs and services that your child is eligible to receive as an adult.

Another important part of this transition is teaching youth with ASD to self-advocate. This means that they start to take on more responsibility for their education, employment, health care, and living arrangements. Adults with ASD or other disabilities must self-advocate for their rights under the Americans with Disabilities Act at work, in higher education, in the community, and elsewhere.

Living arrangements for adults with ASD

There are many options for adults living with ASD. Helping your adult child choose the right one will largely depend on what is available in your state and local community, as well as your child's skills and symptoms. Below are some examples of living arrangements you may want to consider:

Independent living. Some adults with ASD are able to live on their own. Others can live in their own home or apartment if they get help dealing with major issues, such as managing personal finances, obtaining necessary health care, and interacting with government or social service agencies. Family members, professional agencies, or other types of providers can offer this assistance.
Living at home. Government funds are available for families who choose to have their adult child with ASD live at home. These programs include Supplemental Security Income, Social Security Disability Insurance, and Medicaid waivers. Information about these programs and others is available from the Social Security Administration (SSA). Make an appointment with your local SSA office to find out which programs would be right for your adult child.

Other home alternatives. Some families open their homes to provide long-term care to adults with disabilities who are not related to them. If the home teaches self-care and housekeeping skills and arranges leisure activities, it is called a "skill-development" home.
Supervised group living. People with disabilities often live in group homes or apartments staffed by professionals who help with basic needs. These needs often include meal preparation, housekeeping, and personal care. People who are more independent may be able to live in a home or apartment where staff only visit a few times a week. Such residents generally prepare their own meals, go to work, and conduct other daily activities on their own.
Long-term care facilities. This alternative is available for those with ASD who need intensive, constant supervision.

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National Institutes of Health
NIH Publication No. 11-5511
Revised 2011

Page last modified or reviewed by athealth on January 29, 2014