FAQs: How to care for someone with schizophrenia

“The rule of thumb is that one-third of patients with schizophrenia get back to normal functioning; one-third of them will return to sub-optimal level of functioning. The remaining one-third will require more support and assistance to live a functional life. The key lies in early diagnosis: the earlier you identify the problem and get a diagnosis, and the more scrupulously you follow the treatment, the greater are the chances of recovery,” says psychiatrist Dr S Kalyanasundaram, MD, CEO of the Richmond Fellowship Society (Bangalore Branch).

The early onset stage of schizophrenia is the ideal stage for identification and treatment; the earlier the treatment begins, the greater the chance of medicines being effective. Signs of early-onset schizophrenia include increase in irritability with no apparent trigger, isolation, loss of appetite and sleep, strange behavior like smiling or laughing for no apparent reason, loss of concentration, and lack of interest in hygiene and grooming. Remember though, that the occurrence of a single symptom does not mean that your loved one has schizophrenia. A person with schizophrenia exhibits a combination of these symptoms over a period of time and the symptoms can develop gradually over a period of weeks, or even months. It is also possible that they have another type of mental disorder. Nevertheless, it does need attention to diagnose and initiate treatment.

Persons with schizophrenia lack insight. They are not aware that their behavior is strange or out of the ordinary. The family has to help the doctor by providing accurate information about the changes in the patient’s behavior.

Be open with the doctor. He is a professional and is bound by a code of confidentiality. Family secrets or trivia that may seem irrelevant to you may be causing distress to the patient. It is always a good idea to give the doctor information about all unusual behavior and let them decide what is relevant. Remember that no information is irrelevant and the doctor only wants the patient to get better; not to judge you or the person who is unwell.

1. What are the symptoms?

2. What does the diagnosis mean for your loved one?

3. What kind of support and arrangements will be needed to help the patient get better?

4. Does he need medication? Counseling?

5. Will the patient need to have a caregiver with them all the time?

6. How long will the treatment last?

7. Are there any warning signs you need to look out for?

8. What drugs are being prescribed to the person? When will they begin to work?

9. What if the person does not want to take medication?

10. What are the expected side effects? How can you help the patient manage them? Are there certain side effects that you need to report to the doctor immediately?

11. Do you have to monitor how the person takes their medication? How can this be done without making the person uncomfortable?

12. What can you do as family/friends to support the patient’s recovery?

In the case of acute schizophrenia, the patient may be delusional, paranoid and even aggressive at times. The person may feel uncomfortable or be unwilling to seek help on the advice of certain family members. They may see this as an extension of the conspiracies that are playing out their mind. In such cases, the individual might resist treatment. It is important that a family member or a friend who the patient trusts, or has a strong bond with, speak to them about the changes in their behavior, and the need for treatment.

Sometimes, a person with schizophrenia is unable to think rationally or consent to treatment. If the patient poses a threat to the safety of others or himself, or if he is likely to run away, he can be admitted to the hospital involuntarily. Involuntary admissions (admission into a psychiatric facility against the person’s consent) are made only when the patient is seen as an obvious threat to himself or others.

Try to understand what the patient has to say about the voices – are they pleasant or unpleasant? What do they say? If the person feels suspicious, find out why. Ask how you can help the person to feel better.

When the patient believes in a hallucination or delusion, denying it will just worsen the problem. Speak to them about the hallucination as their experience, and acknowledge that it may be very disturbing for them. For instance, you could ask questions such as: “Do you feel afraid when the voice tells you to…?”

Ask them if they would feel safer in another place. Check if they would feel better if you accompanied them on a walk, or any other activity. If they do not want to be active, take them to a quiet room. Avoid over-stimulation; the delusion may worsen.

Ask if there are any triggers – do the voices speak when the person is alone, idle, tense, anxious or in the company of strangers, etc? In what situations do the voices reduce? Do they disappear when the person is engaged in some activity?

Ask if the voices command the person to do certain things, and check whether the person feels compelled to obey the voices. If so, the person must not be left unattended as far as possible.

Ask if the person gets suicidal thoughts or death wishes – sometimes the person may feel it is better to die as the distress of the voices can be too much to bear. It is a misconception that asking about suicidal tendencies gives the person new ideas. Keep a watch for any such behavior (eg., checking about household toxins) or for discussions on these with other people.

Ask what you can do to help.

For those who are in the acute stage, the doctor may prescribe ‘SOS sedatives’ for emergency use only. Use the sedatives only if needed; monitor the patient and call for help whenever in doubt.

Sometimes, a patient is not ready to take responsibility for their medication and treatment. The caregiver has to assume responsibility for this task till the symptoms subside.

Remember that no drug can make the patient feel better overnight. Some drugs take days while some take a couple of weeks to manage the symptoms. Ask the doctor how long the medications will take to start working.

Many caregivers believe that the medicines are addictive, or that they have severe side effects. This is not true of medicines used to treat schizophrenia. The medications are prescribed by the doctor after a cost-benefit analysis: does the benefit of taking medicines outweigh the discomfort caused by side-effects? If you have any concerns about the drugs prescribed to the patient, speak to your doctor about it.

Medication helps patients by decreasing certain active and disturbing symptoms, but the patient still battles with negative symptoms like being withdrawn or unable to socialize due to their fears and inhibitions. Rehabilitation is necessary for patients to relearn these skills that help them live their lives independently, and interact with others.

During rehabilitation, patients interact with those outside of their own family (staff and other patients), focus on their hobbies or interests, and maintain a structured schedule with activities through the day which are monitored.

Rehabilitation focuses on both the patient and the family. The caregivers are given complete information on the nature of the disorder, how they can support the patient, how to communicate with the patient, and how to handle other behavioral problems.

There is no reason why a person with schizophrenia should not marry and lead a happy life, provided the symptoms are under control and the prospective spouse has full insight into the illness and is willing to take the responsibility. On the other hand, if they marry someone who does not accept the disorder and care for them, the problems will re-appear and worsen the situation. It is also recommended that the prospective spouse and family members are informed about the illness and the treatment this person is currently undergoing.

A patient with schizophrenia can marry as long as the partner accepts them with their disorder, and the patient is prepared for marriage in terms of the new responsibilities it brings. The patient should be informed about, or be prepared for:

1. Physical and emotional intimacy

2. Financial management, household management and other responsibilities (unless the partner is willing to take over these tasks)

It is advised that the caregivers and the prospective partner meet the psychiatrist to discuss any concerns in order to get a clear picture.

Always try to keep in mind that there is more to the person than the disorder. For a person with schizophrenia, the label can cause a lot of distress, bringing up questions of identity: “Who am I?” The caregiver could attempt to restore the person’s self-esteem and dignity, letting them know that they are valued. You can do this by:

1. Keeping them involved in family decisions: The patient may not contribute much, but being a part of the decisions makes them feel included, and gives them a sense of belonging.

2. Helping them socialize in small ways: In India, the practice has been to keep patients away from friends and public for fear of social stigma and physical harm. When the patient is isolated, they are unable to voice their feelings. When they do voice it with anger or hurt, caregivers may see it as the ‘illness speaking’. This can have a negative impact on the patient. Caregivers can try convincing the patient to socialize, but leave the decision to the patient.

3. Keeping things transparent: Don’t hide important information from them, particularly news related to other family members, due to the fear of causing distress. News that will impact them is bound to cause greater distress if they find out accidentally, or hear it from an outsider. If you’re uncertain about how to speak to the patient about family problems, consult your doctor or your support group

1. Helping them meet others who are coping with the same problems. Hearing their stories reassures the patient and the caregivers that they are not alone

2. Learning from other people’s experiences of what to do and what not to do

3. Helping them get a better understanding of the disorder, and how one can be prepared to tackle the symptoms

4. Giving caregivers an idea of how to work on increasing the patient’s independence

5. Letting them speak about issues that the families may find silly or things they are embarrassed to ask the doctor

If someone makes a remark or asks a question, don’t overreact. Take it as you would any question about a fever or other physical illnesses. Convey that it is a biological problem, and that the changes in behavior are due to a chemical imbalance in the brain; you or the patient cannot control it, and it could happen to anyone. By conveying this message, you are helping yourself, the patient, as well as others around you.