In Poland, almost 400 people suffer from schizophrenia, half of them do not know about it, so they do not receive treatment. The disease affects mainly young – less than thirty-year-olds. Their parents and partners experience a drama, take on most of the patient’s life responsibilities and are on the verge of depression.
– I came to the hospital from a meeting with friends. I just suddenly stopped talking, didn’t react to anything. In hospital, I was diagnosed with catatonic schizophrenia. I spent almost a year there with breaks, says Anna. – The stay in the psychiatric ward verified my acquaintances. Many friendships are over. With me, only the partner who took care of my son remained. And my mother, who called me regularly while I was in the hospital. She patiently spoke to me, while on the other side of the receiver I just kept silent.
How to recognize schizophrenia
The causes of schizophrenia are not fully known. It is known that the disease develops when there is an imbalance in the biochemical balance of the brain, especially the dopaminergic system. It can arise from genetic, environmental (e.g. trauma, addictions, emigration, etc.) and individual reasons (lack of ability to cope with stress). Usually, the symptoms of schizophrenia are associated with hallucinations and delusions, but it can also manifest itself as disturbed communication with others, lack of self-will, inactivity, decreased motivation, apathy and inability to feel emotions, motor slowdown, lack of self-care. The patient begins to express himself in a confusing, incomprehensible way. Over time, it begins to isolate itself from its surroundings. Most often, this not only leads to a reduction in private contacts, but also to job loss. – Schizophrenia is one of the most stigmatizing mental illnesses. Symptoms of the disease, sometimes very turbulent, usually cause great problems in the functioning of patients and, as a consequence, lead to social exclusion – says Prof. dr hab. med. Marcin Wojnar, head of the Department of Psychiatry and Clinic of the Medical University of Warsaw.
Sick with schizophrenia and its shadow
It is the relatives who may be the first to notice behavioral abnormalities. This is very important because prompt diagnosis increases the chances of a cure. Properly selected drugs, family support, stable living conditions, short period of non-treatment and continuity of therapy make it possible to hope for a return to normal life. One in four people recover to full health, while in the rest, family support helps to relieve symptoms. Especially since 70 percent. of patients, the disease is of a chronic nature, where periods of illness are associated with a temporary improvement in well-being (only in 20% of patients, schizophrenia takes the form of a single episode).
Who looks after the patient? Close relatives, most often parents, husband or wife. From the recently published report “Schizophrenia. The role of caregivers in creating cooperation. ” shows that most often the caregiver of the patient is a woman (78%), aged 51 on average, who lives with the patient and works professionally (68%). Taking care of the patient takes 34 hours a week, which makes it almost a second job. The caregiver takes care of the household, does shopping, gets involved in the treatment process, reminding about taking medications and visiting a doctor, and also financially supports it. It is not easy, because those who spend so much time with the sick usually have to limit their professional activities (by 1/3 on average). They also experience ineffectiveness at work, which is the presence of the body rather than the spirit, more often than other employees. But financial shortages aren’t the only problem. – In families with chronic mental illness, we can talk about prolonged mourning – say psychologists. –The close person is alive, but does not look like they used to be. Contact with her is difficult or not at all. It intensifies the feeling of loneliness.
On average, caring for a patient takes 9 years, and it’s a straightforward path to caregiver emotional burnout. The report shows that around 18 percent. of them are on the verge of depression, one in four has consulted a psychiatrist or psychologist. What’s the most aggravating? Life destabilization as a result of a stay in a psychiatric hospital, lack of time, lack of free time, the need to worry about the patient and persuade him to do everyday activities. – If we assume that for every patient diagnosed with schizophrenia, there are ten people who are directly affected by the consequences of the disease, we get a figure of up to two million. Only this figure illustrates the real, social significance of schizophrenia, says Marek Balicki, former Minister of Health, head of the Mental Health Center at the Wolski Hospital in Warsaw.
How to help the sitter
– Mental disorders affect every fifth person in the world and are the second cause of diseases after non-communicable diseases. According to the forecasts of the World Health Organization (WHO), in the coming years, mental diseases, including schizophrenia, will become one of the main health problems causing human disability, says Fr. Arkadiusz Nowak, president of the Institute of Patient Rights and Health Education foundation. The scale of the problem means that schizophrenia is no longer a problem for a specific family. Systemic solutions (state policy, health care support, occupational therapy, psychotherapy), educational activities and the use of long-acting drugs can help in caring for the sick. The latter, administered in the form of injections on an outpatient basis, 1-2 times a month, would relieve the caregivers of the burden, facilitate the ongoing control of the drug’s effectiveness and reduce the risk of re-hospitalization.
The greatest relief for the family would be the patient’s independent functioning and return to work. It is rare. Anna succeeded, and after a one-year stay in the hospital, she works again. Not in the same place, but in the same profession. – It just so happens that the new employer is informed about my illness, and I know a little about the mechanisms that can trigger it. I try to take care of myself, not to let stress take over everything, even though it’s difficult. I have to admit that my surroundings have become sensitive to changes in mood, the way I speak. My son, partner, mother are the guardians of my health – says Anna.
Specialists emphasize that the best treatment results are achieved by joint action of the doctor, the patient himself and his relatives. Drugs, therapy, no stigma, family stability and motivation to recover – only such a set can give you a chance to come back to life.
The text is based on the report “Schizophrenia. The role of caregivers in creating cooperation ”, published by HTA Consulting in cooperation with the Institute of Patient Rights and Health Education, commissioned by Janssen-Cilag Polska. The report is part of the information and education campaign dedicated to schizophrenia, carried out by the Institute of Healthcare.