Schizophrenia is a chronic mental illness with disability and dependency. This illness mainly affects the thoughts and perceptions in the mind, which influence behaviour. It is common in men and usually begins at an adolescent age, but may also start later in life.
The National Mental Health Survey in 2016 estimated that schizophrenia and related disorders affect 1.4 per cent of the population, of which 76 per cent are not receiving treatment. The illness deters many aspects such as the ability to learn, complete education, form relationships, socialise and work. The cause of schizophrenia is not yet known. Thoughts can get muddled, which prevents from having meaningful conversation.
The person may believe in a non-existent conspiracy of being plotted against, and so live in fear that she or he will soon be harmed. They may also believe they are under constant surveillance despite having no evidence of such a thing happening. These are called delusions and are of different types.
Experiencing hearing or seeing without any external source of noises or visible things is called hallucination. Imagine how distressing it is to be hearing several voices talking about them around the clock, insulting or abusing them. The person while alone may be seen to be preoccupied as if listening to something or talking to somebody or gesturing into space.
They may also feel their mind or body or emotions are under the control of someone or something else. These problems in thoughts and perceptions are generally referred to as positive symptoms. The so-called negative ones are low motivation, reduction in content of speech, losing interest in socialising and preferring to be alone. The person may have difficulty in concentrating, planning, judging and problem-solving. Fear and constant worries have driven a few to consider suicide.
Parents or spouses of such persons may become clueless about how to behave or communicate with them. Reactions or communication from parents and siblings can help or hinder the improvement, and this could be identified by your psychiatrist during the course of treatment. The above problems may be present at variable intensity at different points in time in the same individual. Psychiatrists gather information about a patient’s behaviour, examine through their specialised interview techniques, then discuss the diagnosis with the family before planning treatment that includes medication and supportive care, both for short- and long-term.
There is no diagnostic test for this condition. Sometimes, a period of observation in the hospital may be required to confirm the diagnosis. It is found that one-third with the illness may get better with treatment and function well. Another one-third may have on-and-off worsening of behavior. This type is similar to what was shown in the movie about the Nobel Laureate John Nash, ‘A Beautiful Mind’ where there is repeated recurrence of intense symptoms, requiring short periods of care in hospital.
There are medications called antipsychotics which come in tablet, capsule, or syrup forms. During a crisis, when the patient is very restless, injectable medication is administered with an aim to instantly calm the person down. There is also an option of giving long-acting injectable medications, once every two or four weeks, usually for someone who does not take medications regularly. Like any other medicine, these also have side effects.
The older ones were causing stiffness or Parkinson-like side effects, and with the newer ones, one has to monitor weight, body fat and cholesterol levels. Many people respond to medications, and symptoms are controlled to a large extent which improves functioning and reduces stress on the caregivers.
Some individuals who have followed the treatment plan have returned to work. Research has shown that the longer the period of no treatment, the lesser the chance for good improvement. Psychological disability is difficult to identify, in contrast to physical disabilities which are evident on examination.
The disability in schizophrenia is assessed in various dimensions such as self-care, interpersonal activities, communication and work. Some people with schizophrenia may be eligible for disability benefits, which is best discussed with your psychiatrist.
These disability issues and benefits seem under-addressed probably due to lack of awareness, but if found eligible, it could help the caregiving family members. The illness comes under the broader definition of mental illness, as per the Rights of Persons with Disabilities Act of 2016. If a person with this condition has severe functional disability and is dependent, a courtappointed Guardian may make decisions on that person’s behalf in many aspects of life. Section 18 of the new Indian Mental Healthcare Act of 2017, says every person shall have right to access to mental health services run or funded by the appropriate Government. Many times, when the patients need to be admitted, but believe they are not ill and refuse, there is a provision to admit them against their will under section 89, at the recommendation of, for example, two psychiatrists. Sometimes this is required in the best interest of patients, who are unable to make decisions about their treatment, but at the same time are refusing it. If they can decide, willing and there is a need, they can also be admitted as voluntary patients under section 86.
Under the Act, there is a Mental Health Review Board to overlook, in order to prevent inappropriate detention in hospitals, and to ensure that human rights are not violated. The Act seems to put an end to so-called ‘locking’ patients, that too for a longer period of time, which was a common practice in old mental asylums. A complete cure may not be possible in most individuals.
As the illness starts in the adolescent period, many may not complete their education, remain unemployed, and remain dependent on family members for all kinds of care including financial support. Many of them have difficulty in socialization and communication.
Before encouraging them to try to take up jobs, they are given social skills training, available in some specialist centres. The main part of long-term treatment is the so-called rehabilitation care to improve living skills, and reduce dependency to then reintegrate the isolated individual back into society and thus promoting autonomy. Caregivers experience varying levels of stress, then burnout, and a few may even develop depression.
Sometimes they know the care needs so well that they can assist in preparing a suitable treatment plan. There is a need to sensitise the community to support such individuals and families, as their parents constantly worry, thinking “who after me/us?” will care. NGOs can play a major role in supporting such individuals to become as less dependent as possible. One must know that these individuals also have rights to equal opportunities without discrimination and access to mental health treatment.