Caregivers' support vital to schizophrenics

Schizophrenia is a complex, chronic mental illness that affects about 1% of people worldwide. It usually has its onset in early adulthood, mostly affect the person throughout their life. The patients suffer abnormal experiences in their thinking, emotions and perception that consequently disrupt their behaviours.

Experience of hearing multiple human voices when no other person is around, called auditory hallucinations, commonly occur. Abnormal beliefs of conspiracy against self or own life is in danger are other common experiences. Person’s socialising and occupational ability gets hampered. Skills required for living independently are not acquired or gets impaired, so they need ongoing family support.

Caregivers of schizophrenia patients are mostly parents. The challenge is to primarily ensure the person is diagnosed and being regularly treated. Medication compliance is vital although there is no complete cure.

The goal of treatment is to alleviate or reduce the abnormal experiences and their effects, to help the patient to re-learn or slowly learn as much as skills as possible. Those having severe illness where the behaviours pose danger to others or to self, may need brief period of treatment in a supervised hospital.

The patient continuously hearing multiple voices conversing about own self, becomes irri­tated against the derogatory vo­ices, may react by responding to these voices. Caregivers notice that the patient assumes conspi­racy against him, that life is in danger, there is a need to protect oneself, unfamiliar people are watching, and may be seen having a conversation with own self.

Aggression may be as per command from the abnormal voices heard or perceived that the person is trying to protect self by trying to attack others. The worst part is the patient does not believe the need for treatment. Since he has difficulty in trusting others, close family members are able to convince to seek early medical help. Occa­sionally, these signs may be mis­sed, leading to crisis situation. A brief admission to psychiatric hospital is the only option then.

The illness worsens when faced with a stressful situation, leading to aggressive or slowed down behaviour. Th­ese are usually noticed by close family members. The family’s reaction to the patient’s behaviour can also hinder the patient’s recovery. Stress due to urban lifestyle can impact negatively. Sometimes these abnormal experiences will not res­pond to the available treatments.

Engaging such patients in meaningful activities in rehabilitation centres along with medication monitoring can give respite for the caregivers. Vocational training and training them to maintain their activities of living skills help in reducing caregiver burden.

Regular group sessions run by caregivers themselves in such centres will help the families learn to cope or manage particular behaviours in the individual, thus reducing the disease burden on caregivers, thereby improving overall quality of life or patient and family.

Medication compliance is important. Some patients, because they are not able to recognise being unwell, pretend taking their tablets, may hide their medications. A few patients receive injectable medications in depot form every few weeks reducing the worry of having to take medications every day.

Side effects

But the downside is that patients may not like regular injections. Previously available anti-psychotic medications caused Parkinson’s kind of side effects affecting person’s movements. With the newer anti-psychotics, it is important to monitor weight and need for regular exercise to buffer side effects.

There is a need to create confidence in the families of patients that these behaviours in the person are due to mental illness and that care is available. Seeking consultations with, if possible, one psychiatrist regularly, helps maintain rapport and builds a professional doctor-patient bo­nd that can itself act as therapy.

With continuing care, significant recovery is possible in most patients. Daily living skills can be learnt. Some patients are able complete graduation and take up meaningful employment. These are the goals of holistic treatment for patients. These skills are of great help when the caregivers themselves get older.

Ongoing caregivers’ support for the patients and motivating of caregivers could be considered as a basic need in these situations. So, care should include empowering of the caregivers. Subsidised transport facilities for the patient and the primary caregiver, monthly allowance for caregivers along with regular free medication or at subsidised rates supplied by the state could go a long way. Caregivers’ representation could be considered during policy making.

(The writer is a Consultant Psychiatrist based in Bengaluru)