*Early detection, regular treatment and good family support play a crucial
role in dealing with this problem.*

*22 May 2011*

*DR. R. THARA*


At 29, Ms. S got married to a man without a proper job and in considerable
debt. Within six months, he had sold her jewels to repay his loans. Ill
treated by her in-laws, she did not have much support from her brothers, her
only other family. When her husband, unable to pay off his debtors, hung
himself; she continued to live in his home for their daughter's sake.
However, constant harassment led to increased irritability, poor sleep,
talking to herself as a response to voices. She became very aggressive
towards her brother and in-laws and reported that they tortured and
threatened her. She would take her daughter to school even on holidays,
expressed increased religiosity, was found talking and laughing to herself,
neglected personal hygiene, and started bathing in public.

*Amicable solution*

When Ms. S was admitted at the residential centre, we created a treatment
and management plan, including use of antipsychotic medicines, a supervised
structured activity schedule, keeping her engaged with kitchen work and
insight-oriented counselling. Even as she improved, neither her brothers nor
the in-laws evinced interest in taking her back. The case manager paid a
home visit and spoke to them. It was finally agreed that while she would
live with the in-laws and the brothers would provide financial help. This
seems to be working so far and Ms. S is regular for follow-up and is able to
take her of her child. Her story is typical of many women who either lose
their husbands or are abandoned after they fall ill. In this case,
persistent rehabilitation and education of the family helped us find an
amicable solution.

The word schizophrenia is as complex as the disorder; many people have not
heard of it, do not understand it and even have problems in pronouncing it.
In 1984, when we named our non-profit organisation (NGO) the Schizophrenia
Research Foundation, many well-wishers advised us to change the name to
Mental Health Foundation or something similar, which would be simpler to
understand. But we strongly felt that only by using the name would we
achieve one of our main objectives — to increase visibility and awareness of
schizophrenia.

Why is it important for people to know about schizophrenia and understand
it? One little-known fact is that it affects 8-9 million Indians, adversely
affecting their productivity and causing stress to their families and care
givers. Understanding schizophrenia is also important because it strikes
young people during their formative years. Schizophrenia has been referred
to as the “greatest disabler of youth” and is among the 10 most disabling
conditions in the world, as per WHO estimates.

Schizophrenia is often mistaken for “oddities of adolescence” or
“eccentricities of the youth” or held to be the result of black magic or
visitation from spirits. All this leads to delay in seeking help and results
in the condition becoming chronic. It is also confused with mental
retardation, autism and a dissociative (dual) personality disorder (Jekyll
and Hyde phenomenon).

So, what is Schizophrenia? It denotes a severe and complex mental illness in
which the patient's ability to think, feel or behave is impaired. In some
cases, it is obvious that the person is ill; in others, he may look totally
normal. It is also possible that he is unaware that he has a problem.

What causes schizophrenia? Genetic factors play a role; we have seen
definite structural and neuro-chemical abnormalities in the brain in
patients with schizophrenia. Stress, family and social pressures, if
intense, can also lead to schizophrenia in a vulnerable individual. Till
today, there does not seem to be a well-defined, preventive strategy. Early
diagnosis and treatment is, therefore, all the more important.

The outcome of the disorder is variable. There seems to be a rule of the
third; a third of all patients do well with treatment and are able to lead a
largely normal life. Another one-third improves but has repeated episodes,
sometimes brought on by stress. The final one-third third, tragically, does
not show substantive improvement and may need lifelong care. Support from
mental health professionals and families are both critical.

Take the case of Mr. V, the eldest son of a temple priest in Chennai. When
he secured admission in IIT, it was a moment of great joy. Suddenly, after
about eight months, he returned home. He was very confused and afraid that
people were out to attack him and kill him. He responded to medication and
we sought a transfer to IIT, Madras. However, even here, his academic
performance was far from satisfactory. With regular medication, our support
to the caregivers and counselling coupled with a high degree of
understanding from the faculty, he managed to complete his five-year course.
But, soon after, he stopped medication and became hostile to the treating
team. He gradually deteriorated and all persuasion by his mother, his
primary carer, bore no fruit.

When I paid him a visit, I found him unkempt sitting on a bench staring into
space. He spent most of his time sitting before pictures of various gods or
listening to the BBC. After the father's death, the mother had to mobilise
all possible resources, human and financial, to take care of him. Since he
was refusing any intervention, we persuaded him to get admitted in our
residential rehabilitation centre.

*Painful reminder*

Ten years of no treatment had played havoc and he was reduced to a passive,
uninterested man who showed no motivation. Now he works in the sheltered
workshop, does not talk much about his family and seems resigned to his
life. Every time I see him, it is a painful reminder that schizophrenia has
effectively put out the twinkle in his eyes, the fire in his brain and the
joy in his family. This is despite good initial treatment and strong family
support. His story illustrates how lack of continuity of treatment can break
the trend of improvement. Then despite the best of care, such persons
improve only to a certain extent.

I would like to emphasise the importance of early detection, regular
treatment, good family support, meaningful activity/vocation and empowerment
and encouragement of the patient. Only then will we have better outcomes for
a greater percentage of the many people living with schizophrenia.

The author is the Director, Schizophrenia Research Foundation (SCARF).
Website: www.scarfindia.org

*What families can do?*

Educate and inform yourselves more about the disorder
Join/form support networks and groups
Engage in advocacy; disability benefits, health insurance coverage
Fight stigma; break down barriers of ignorance, prejudice ad discrimination
Protest wrong portrayal by media
Identify subsequent caregivers in the family/network
Make financial/ physical arrangements for patient's continued care
Look after your own physical and mental health

http://www.hindu.com/mag/2011/05/22/stories/2011052250280600.htm

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