Antipsychotic medication greatly reduces the chance that patients with schizophrenia will relapse. Unfortunately, about half of patients recovering from a relapse stop medication within 1 year. This handout explains some reasons patients with schizophrenia stop their medication and suggests ways families can help.
If medications are so helpful for schizophrenia, Why do patients
stop taking them?
People with mental illness aren't the only ones with compliance problems. Medical patients often stop medication when symptoms get better or the benefits of treatment seem far off. Likewise, many patients with schizophrenia don't see any day-to-day benefits from antipsychotics; there can also be a long lag time between stopping medication and the resulting relapse.
Denial of Illness
Certain features of schizophrenia cause greater compliance problems than are usually seen in other serious medical conditions. Probably the biggest cause of noncompliance in schizophrenia is denial of illness. More than half of those with schizophrenia don't admit they are ill or need medications. The following problems can lead to denial. Psychotic (or "positive") symptoms. Paranoia, grandiosity, and disordered thinking can cause people to refuse medication because of a lack of insight. This can lead to a vicious "Catch-22" cycle—psychotic symptoms lead to noncompliance which leads to more symptoms. Fortunately, when "positive" symptoms are properly treated, the person will often (though not always) become more cooperative with medication treatment.
Cognitive and disorganized symptoms.
Disorganization and trouble learning from experience make it harder for patients to realize they are ill or that medications can help prevent relapse. Embarrassment. Having a mental illness is very stigmatizing. Medications are a daily reminder of being ill or different from others.
Other causes of noncompliance
Side effects. Many antipsychotic side effects are very unpleasant. Akinesia is a state of feeling or being slowed down "like a zombie". Akathisia is a feeling of restlessness that causes jitteriness or a need to pace. Even if these or other side effects aren't a problem right now, past episodes of side effects can make people unwilling to ever take antipsychotic medications again. The good news is these side effects can be effectively treated.
"Negative" symptoms. People with schizophrenia often have low energy and motivation, which can make it very hard for them to get medications without help or follow instructions reliably. In such cases, the person isn't really against taking medication, but needs help to follow the prescribed regimen. Alcohol or street drug use. Drug or alcohol use can make people too "stoned" or intoxicated to follow through with medication. Many patients have also been told that it is risky to mix prescribed medications with street drugs or alcohol and will stop antipsychotics before using drugs or alcohol. Patients should stay on their antipsychotics even when they are using drugs or alcohol.
Family or therapist opposition. Patients may stop antipsychotics if a family member does not want them to take them or if their psychotherapist or substance abuse counselor is opposed to psychiatric medications.
Changes in social network, supervision, or treatment system. If a person was taking medication because of the influence of a family member or mental health professional, disruptions in that relationship may cause the person to stop. There is also a high risk of noncompliance when a person who was getting medication in a supervised setting goes to an unsupervised setting.
Sometimes it is obvious a person has stopped medication; at other times it is harder to tell. Often patients hide their noncompliance because they will get in trouble if people find out. Mental health professionals often miss the fact that their patients have stopped medication, so you cannot rely solely on their assessment. Still, try to maintain contact with the doctor to discuss compliance and other issues. Double-check what the doctor has actually recommended. Patients sometimes hear what they want to hear and believe a professional recommended stopping the medication, when it was actually the patient who insisted on stopping.
Talking about compliance
First, when should you not talk to your relative about compliance? Don't push the issue if your relative gets inflamed or agitated, especially if he or she is getting psychotic. An understanding of the need for medications tends to "go out the window" when acute symptoms return and no amount of convincing may work. In this situation, contact the treatment service or a crisis team immediately. Do not get into a direct confrontation about medicine, especially when your relative is getting sick. Not only will a confrontational approach be counterproductive, it can also be very dangerous. Otherwise, it is usually OK to ask about compliance. If you suspect your relative may be noncompliant, ask—but in a way that is not judgmental or threatening. Discuss noncompliance as something normal, perhaps mentioning a time when you did not comply with medication. If you find out there is noncompliance, don't punish or scold your relative or it may be the last time you get an honest report. Gently ask the person why medicines are being rejected without trying to argue about it.
If your relative is noncompliant, the next step is to try to do something about it. Take your time deciding what to do. First, try to get your whole family to agree on the need for medication. Otherwise, the person you are trying to convince will naturally seek out and value the opinion of the family member most opposed to medications (a problem more common in divorced families). Have the family member who is most influential do the talking—usually, the spouse or boy/girlfriend, followed by friends, siblings, and (last, of course) parents. Next, figure out what to say. Avoid starting with a "strong arm" approach, which can lead to unproductive power struggles. Rather, try to persuade your relative to take medication by finding a perspective you can both agree on. Focus on day-to-day benefits (e.g., better sleep, anti-anxiety effects) rather than adopting a "scare the daylights" approach. If you want to discuss how medications help prevent relapse, ask the person if a relapse would make it hard to achieve his or her goals.
The connection between preventing relapse and meeting life goals may not be apparent to the person being asked to take medication. If the person is denying psychotic symptoms, avoid a head-on confrontational approach. Sometimes, what seems to be "denial" is really embarrassment about being ill or is part of a healthy desire to appear well. Be sensitive and understanding about how difficult it must be to admit that you are "mentally ill."
If your relative complains of side effects, be sympathetic. Ignoring complaints about side effects won't make them go away and indifference may make your relative feel neglected or misunderstood. However, don't complain about side effects or the need for medicine in front of your relative—this can erode his or her willingness to stick with any medication regimen. Instead, discuss your concerns with the doctor. If persuasion does not work, it is better to have the doctors or treatment system do the "arm twisting." If all else fails, you may have to resort to involuntary commitment or a mobile crisis team evaluation. While painful, this is far better than directly confronting your relative about compliance during a crisis.
Other things you and the doctor can do about noncompliance
Help your relative find a doctor who communicates well with families and has a strong focus on side-effect management. Ask the doctor about switching from an oral to a long-acting injectable antipsychotic (depot therapy). While depot therapy does not guarantee improved compliance, it makes it much easier to track compliance and shifts the medication power struggle out of the home and into the clinic, where it belongs. If side effects are a major cause of noncompliance, ask the doctor about switching to one of the newer "atypical" antipsychotics (clozapine, risperidone, or olanzapine). Sometimes there is a trade-off between giving the older medications by long-acting injections and starting one of the newer medications, which currently come only in pill form. Patients with schizophrenia often have a hard time following a complicated drug regimen. Ask the doctor about simplifying the drug regimen. The pharmacist can be a major ally in this kind of situation.
Finally, maintain hope. People can change. Never give up!
*Adapted with permission from Dr. Weiden's talk at the 1993 National
Alliance for the Mentally Ill convention. This material is copyrighted
by Williams & Wilkins; however, it is considered fair use and may be
duplicated for distribution to families and patients without charge.
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