SCHIZOPHRENIA: VICTIMS OF MADNESS, ILLNESS OR STIGMA? Surgeon Captain Asif Iqbal Ahmed
Mankind has known schizophrenia for thousands of years, its descriptions being given by ancient Greek Physicians. However, it emerged as a medical condition worthy of study and treatment only in the 18th century. By the 19th century it was viewed as insanity or madness, a regrettable affliction rather than a reprehensible behavior. The homeless individuals scantily clad in dirty rags and knots of long unruly hair scrummaging in trash piles for food that you frequently saw a few years back were probably unfortunate victims of schizophrenia that had gone untreated.
Schizophrenia has been a long misunderstood condition to patients, their families, society and remarkably, too many in the medical and psychological fields. Truly an illness without borders, it is a leading worldwide public health problem that extracts enormous personal and economic costs. It has 1- 4% lifetime prevalence, which is roughly equal worldwide and is found in all societies and geographical areas. Of worldwide 25 million cases, in India it is estimated that there are 4.7- 8 million (the size of total Switzerland) cases of which 40 to 50 % are untreated.
Earlier majority of these patients would be in custodial care in large mental asylums such as Yeravada Mental Hospital, Pune. With deinstitutionalization, many have been released into communities ill equipped to provide them treatment and rehabilitative services. For the more fortunate ones the burden of care has shifted to families, creating an extremely difficult hardship for the family members. The less fortunate ones have no place to live, or live in conditions of isolation and hopelessness or simply end up in jails.
What is Schizophrenia?
Eugene Bleuler in 1911 coined the term “Schizophrenia”(Splitting of the mind) to denote a long-term mental disorder of a type involving a breakdown in the relation between thought, emotion and behavior, leading to faulty perception, inappropriate actions and feelings, withdrawal from reality and personal relationships into fantasy and delusion, a sense of mental fragmentation. It does not mean split personality, there is a loss of inner unity of mental activities, and emotions do not correspond to ideas. Common experiences include:
- Hallucination: hearing, seeing or feeling things that are not there.
- Delusion: fixed false beliefs or suspicions not shared by others in the person’s culture and that are firmly held even when there is evidence to the contrary.
- Abnormal Behaviour: disorganised behavior such as wandering aimlessly, mumbling or laughing to self, strange appearance, self-neglect or appearing unkempt
- Disorganised speech; incoherent or irrelevant speech
- Disturbances of emotions: marked apathy or disconnect between reported emotion and what is observed such as facial expression or body language
What is the impact of the illness?
Schizophrenia is chronic but not immediately fatal illness, this population is ill over a long period of time. It is listed as the eighth leading cause of DALYs (disability adjusted life years) worldwide in the age group 15–44 years, according to the WHO and accounts for 1.1% of the total DALYs and 2.8% of YLDs (years lived with disability), Global Burden of Disease Study. The illness makes the victims unable to function at an adequate level to be self sufficient. They pose an unfortunate burden to their families, who, with the patient, are the everyday heroes of their own stories.
Mortality rates were quite high with the average age of death being 34.2 years, much below the average Indian lifespan of 60.5 years in 2002. Suicides accounted for 7 out of the 16 deaths. International studies estimated the overall weighted average for years of potential life lost to schizophrenia was 14.5
They are at increased risk for substance abuse (nearly 90% dependent on Nicotine) and suicide. Unfortunately in 10% of schizophrenia patients, cause of death is suicide.
A number of persons with schizophrenia land up in jail charged with misdemeanors such as trespassing. As many as one in five (20%) of the 2.1 million Americans in jail and prison are seriously mentally ill, far outnumbering the number of mentally ill who are in mental hospitals, according to a comprehensive study. Most people with schizophrenia, however, are not violent toward others but are withdrawn and prefer to be left alone.
Is there a cause for hope or is it a lost cause?
The advent of antipsychotic medication supports a more optimistic prognostic picture, although schizophrenia is always a serious disease.
. Early intervention and early use of new medications lead to better medical outcomes for the individual
India and Nigeria have best outcomes (50%) vs 6-23% in developed nations
The efficacy of antipsychotics in relapse prevention (23% relapse rate at 1 year) is much superior than antihypertensives (48% relapse rate at 1 year)
With proper family education focused on reducing expressed emotion (EE), relapse rates could be brought down from 31% to 9%. Families who bear the brunt of the illness can be made valued members of therapeutic environment.
What are the barriers to help?
MENTAL HEALTH RESOURCES in India are limited, just around 4500 psychiatrists are available for over a billion people. Therefore, the treatment is focused primarily on the management of symptoms with drugs. Rehabilitation and psychosocial intervention are frequently neglected and rarely available.
PATHWAYS TO CARE/ REFERRAL- A distressing finding is that despite evidenced effective treatment nearly half of the patients never reach medical facility even if in the vicinity. The first point of contact for treatment in India is magico- religious in 65 % cases as this is socially sanctioned, spirits, witchcraft and magic being held responsible for the condition.
The average time taken by a patient to reach appropriate mental health care was about 21 months in urban areas, while patients from the villages took almost 26 months to reach a mental health centre.
STIGMA- In a Global campaign, respondents were queried on attitudes about people with schizo. 20% felt they would be unable to maintain friendship, 50% would not be able to room and 75% could not see themselves marrying someone with the illness. Greater contact did not appear to improve acceptance but greater knowledge of the illness favoured more accepting attitudes. Stigma is carried not only by the patient but their families as well. The circumstances of the 1st admission or subsequent readmission can involve the police or similar actions at the family home, creating lasting negative impressions by landlords and neighbours. The lack of societal acceptance that this is an illness that needs emotional and financial support is extremely hurtful to families.
News and entertainment media tend to link mental illnesses including schizophrenia to criminal violence.
FAMILIES- The joint family system often credited with therapeutic qualities in providing care and protection to the patients resulting in better outcome has its flip side: many times the families are against treatment. Families had already learnt to cope with the untreated state and were reluctant to introduce any medication that they were afraid “could tilt the balance”.
A large family with multiple caregivers and wage earners were able to compensate for the lack of contribution by the ill person and took care of them without any medical treatment as the burden and responsibility were shared.
“Effective treatments are theoretically available: they need to have
delivery assured in the real world”
What can General Practitioners/ Other Disciplines do to help?
One or two agencies or mental health professionals alone cannot meet with the challenge of schizophrenia care and research. It requires a nation-wide, multi-professional (non- Psychiatry Doctors) and multifaceted programme by the Indian Government in partnership with private agencies. Community care has to be augmented and strengthened in order to reach the millions who are denied care and rehabilitation.
- Reducing stigma-One solution to reducing stigma is the creation of public awareness of the illness as a treatable biological illness similar to more accepted medical conditions. People with schizophrenia are far more likely to harm themselves than be violent toward the public. Violence is not a symptom of schizophrenia.
- Early referral- The earlier someone with schizophrenia is diagnosed and stabilized on treatment, the better the long-term prognosis for their illness.
- Family education and support
- Collaboration in medical management- People with schizophrenia are 2-3 times more likely to die early than the general population. This is often due to preventable physical diseases, such as cardiovascular disease, metabolic disease and infections. Reasons for this include: late diagnosis and poor treatment of physical illnesses, metabolic side effects of antipsychotic medication, unhealthy lifestyle and high risk of suicide. There is also evidence that patients with schizophrenia receive sub optimal healthcare, with cardio-protective drugs such as antihypertensives and statins prescribed at lower rates. Thus while clinicians should facilitate lifestyle improvements they should also focus on providing the best care for both the mental and physical health of patients with schizophrenia in order to bridge this mortality gap.
- Patient education- Healthy lifestyle and compliance
The treatment goals for the moment are to identify the illness as early as possible, treat the symptoms, provide skills to patients and their families, maintain the improvement over a period of time, prevent relapses and reintegrate the ill persons into the community so that they can lead as normal a life as possible.