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FAQs

FAQs: How to care for someone with schizophrenia

Can schizophrenia be treated?

As with many mental disorders, schizophrenia is an illness that can be treated effectively, and in most instances, the person can get back to near-independent functioning. Much like other chronic physical illnesses such as diabetes and hypertension, with medication and support, this disorder can be managed as well. All it needs is proper medication, the support of family and friends, a structured routine and suitable psychosocial inputs.


“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). 

What is the caregiver’s role in the diagnosis and treatment?

Schizophrenia evolves gradually, the symptoms get worse with time if they are not treated. A person with schizophrenia does not know that their behavior is strange or abnormal. It is the person’s family and friends who can recognize that they have a disorder, and help them get proper treatment.

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.

How can I help the doctor make a diagnosis? How much information should I share?

Diagnosing mental disorders is more challenging than diagnosing physical illnesses. The doctor has no visual proof such as X-rays, scans or lab tests; they have to make the diagnosis based on their interaction with the patient and reports given by caregivers about the possible symptoms.

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.

What information should I seek from the doctor who makes the diagnosis?

Here are some questions you can ask the treating doctor to help you understand the diagnosis:

  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?

How do I speak to my loved one about their behavior and convince them to seek treatment? Can I get them treated against their will?

A person with schizophrenia may sometimes (or often) be out of touch with reality. Treatment is necessary, and will work best if the patient is convinced that they need help. Engage them in a dialogue about the changes in their behavior and be supportive. Suggest that the family is concerned about these changes (without blaming the person for the changes in their behavior) and that you are doing this out of worry. Consult the doctor if you’re not sure about how to have this conversation with the patient.

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.

Handling a psychotic episode: How do I speak to a loved one about their hallucinations and delusions?

When a patient speaks about their hallucinations or delusions, many caregivers tend to ‘correct’ them by telling them that the experiences are not true and that they are ‘imagining’ it. It is important to remember that for the patient, the experience is true. The hallucinations and delusions are very real.

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.

What can I do if I notice that the symptoms have changed or worsened? Is it time to change the medication?

As a caregiver, stay in touch with the treating doctor to report any changes in the symptoms. The symptoms of schizophrenia tend to build up gradually. A change or worsening in symptoms could be a sign that the patient has skipped taking his or her medication. If it happens, observe the patient and make sure they are taking all the prescribed pills.

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.

The symptoms are now under control. Can the patient stop using medication?

It is a myth that medication can be discontinued once the symptoms stop. Medication should be continued until the doctor advises otherwise. The medications keep the symptoms under control; if they are discontinued, the patient is most likely to have a relapse. With every successive relapse, the patient becomes less functional, and the disorder becomes more difficult to manage.

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.

How do I look for a relapse?

In the case of a relapse, there is a repeat of the symptoms seen during the onset stage – irritability, sleeplessness, mood swings, suspicion or paranoia, social withdrawal, sudden outbursts of anger, smiling or laughing for no apparent reason, loss of interest in hygiene and personal grooming. It is crucial to identify the relapse and provide treatment as early as possible.

What is rehabilitation? Is it necessary?

For a person with schizophrenia, rehabilitation is often needed. The disorder itself is invisible, but it affects the patient’s thoughts and behavior. If the impact of the disorder is not acknowledged, family and friends may see the patient as being moody, lazy, or disobedient.

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.

If someone I know has schizophrenia, can they marry? Will marriage help cure schizophrenia?

The misconception that marriage can cure mental disorders is, unfortunately, a strong belief in our country.

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)

What the prospective spouse/ caregivers need to think of:

  1. How much is the patient willing to share with the partner?
  2. Are there any legal concerns related to the patient’s finances or property that need to be taken care of?
  3. Can medicines interfere with the patient’s fertility or cause sexual dysfunction? Could this become an issue in the relationship?
  4. What are the chances of the children developing the same disorder?
  5. Will the partner be comfortable with assuming the role of the primary caregiver? If not, what arrangements have to be made?

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

How can I make sure that the person with schizophrenia doesn’t feel alienated from family or friends? Can we treat him ‘normally’?

The struggle to overcome schizophrenia can be difficult, as much for the caregiver as it is for the patient. It can be frustrating when the patient behaves in a strange manner, refuses to take medication, or suspects their own friends and family of plotting against them.

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

Why do I need a support group?

Mental disorders, particularly schizophrenia, need lifelong management. The psychiatrist can help by prescribing drugs and giving you advice, but it is the family and friends who play the biggest role in helping the patient live an independent, functional life. A caregiver may feel overwhelmed by the idea of taking care of the person for decades. In such cases, a support group can help the caregiver as well as the patient by:

 

  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

How I can talk about schizophrenia with friends and relatives? There is so much stigma attached to mental illness in our society…


 

The first step to be able to talk to others about the disorder is acceptance of the fact that the patient has no control over the illness, and therefore is not ‘responsible’ for it. Accepting this can give you the strength to speak about this to relatives and friends.

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.