Breaking Schizophrenia’s Grip
words by Eve Jacobs / Illustration by Eric Miller
chizophrenia — even the word makes us quake. Literally meaning “split mind,” it rings panic bells in most of our brains. Intellectual deterioration, social isolation, delusions, and disorganized speech and behavior are all on the list of frightening and life-changing symptoms. The little bit most of us know — that the first episode comes on during young adulthood and can have dire long-term consequences — makes every parent dealing with a 20-something’s crazy-seeming emotional crisis pray that it’s just a crisis and no more.
While sad, scary and dead-ended are words we may attach to those with schizophrenia, specialists in this field say that recovery and return to “normal life” are possible and a first psychotic episode can also be, in some cases, an only psychotic episode. Steve Silverstein, PhD, a professor of psychiatry and director of the Division of Schizophrenia Research at RWJMS and UBHC, says, “A lot of people are getting well, but a lot of people aren’t. We need to come up with some new ideas.”
A clinical psychologist with 20 plus years experience in this tough field, he’s brought $7 million in research grants to UMDNJ since joining the faculty here five years ago. Since then, he has built-up the division from one employee (himself) to 12 research staff, two faculty members, and 1.5 administrative support staff, all working toward one goal: “to develop and study new ways of making people’s lives better through medications and psychological treatments.” Silverstein is right at the front line, conducting lab research and clinical trials, and trying innovative approaches to spring young minds from schizophrenia’s grip.
Schizophrenia is a severe and disabling mental disorder affecting about 1 percent of the world’s population at any given time. Its incidence is roughly equal for men and women, although the onset is usually between 18 and 24 for men and 23 to 28 for women. “It’s rare before age 16, and these children tend to have very poor outcomes,” says Silverstein. It is found throughout all ethnic groups and countries, although he points out that in India, as well as some other less developed countries — where the extended family group tends to stay together — the family member with schizophrenia is supported and sheltered in the home and outcomes are often better, according to studies conducted by the World Health Organization.
Schizophrenia is actually not one, but a group of severe brain disorders characterized by combinations of symptoms such as withdrawal from reality, disordered thinking and behavior, and delusions and hallucinations. A diagnosis is made from “positive” symptoms — those added on to normal functioning; “negative” symptoms — representing a loss of normal function; and symptoms that represent a fragmentation of function. Silverstein notes that while such symptoms are necessary for the diagnosis, they are not sufficient. A period of decline in functioning, as well as ruling out other medical conditions that could cause these symptoms, is necessary.
The two most common “positive” symptoms are auditory hallucinations (hearing voices) and delusions, such as “everyone’s out to get me, or I’m Jesus,” says the clinical psychologist. Another positive symptom is bizarre behavior. “Negative” symptoms include anhedonia, the inability to experience or anticipate pleasure. Individuals “lose their sense that they can enjoy things and so they don’t participate or make the effort to do things they used to enjoy,” he explains.
Disorganized symptoms include speaking in a fragmented, incoherent way that makes no sense, and inappropriate affect, meaning the facial expression doesn’t match what’s being said or felt. “This is a breaking apart of coherence of thinking, expression and emotion,” he says. “Schizophrenia actually refers to the split between thoughts and feelings, or the thoughts themselves.”
For most people, schizophrenia is a life-long condition that must be coped with. However, relapses of psychotic episodes (when symptoms reappear or worsen) can occur more or less frequently depending on a number of factors, including genetics, stress level and availability of appropriate treatments.
Antipsychotic medications — even the second generation ones such as Zyprexa, Seroquel and Risperdal that have come on the market in the last 20 years — reduce symptoms and allow many with schizophrenia to function again, but they are not cures. And the side effects, including significant weight gain and elevated blood lipid
levels, are major complaints.
“In the U.S., if you’re put on an antipsychotic medication, you are typically told that you will need to stay on it for a long time,” Silverstein says. “But when I’m asked if it will be life-long, I say, ‘I don’t know.’ Long-term studies indicate that up to 40 percent of patients do well off medication, at least for a while, but this is typically after 15 to 25 years. In the short term, people who go off medication on their own often have a relapse within one to two years, with the highest relapse rates found among people who also use street drugs or alcohol and/or who return to live with critical and intrusive families.
On the other hand, European studies and some earlier work in the U.S. indicate that, for at least some people having their first episode of psychosis, successful treatment is possible without antipsychotic medication. (They are prescribed medications only for anxiety and depression.) In such cases, intensive psychological therapy is necessary. Living with psychotic symptoms without any treatment at all appears to cause changes to the brain that make long-term recovery less likely. What Silverstein tells patients is that if they start on antipsychotic medication, they need to know the potential risks and benefits, and the steps they can take to regulate their stress response and minimize the chance of relapse.
Antipsychotic medications do pose potential dangers. All of them block dopamine receptors — believed to reduce the brain’s response to stress. (The brain is thought to be hyper-sensitive to stress in schizophrenia as the result of excessive dopamine release.) However, blocking dopamine receptors may result in the compensatory growth of new receptors, leaving the person more sensitive to stress and dopamine if they stop the medication, especially if it’s done suddenly. This may explain the high relapse rate in people who discontinue medication on their own. Also, recent research suggests that antipsychotic medication may contribute to loss of brain cells in the first few years after onset of the illness.
Diagnosing the disease is part art, part guesswork and some science, Silverstein contends, and it’s very difficult. First, other possibilities — such as psychosis brought on by drugs, thyroid problems, a neurological disease, or toxic conditions — are ruled out. “You can also have a psychotic episode with bipolar disorder,” he explains.
Although a first episode may appear to come out of the blue, the psychologist says that when you interview parents or look at old home movies, there are often clues. “As children, there may be poor motor coordination, problems in school, and problems with peer relationships. None of these findings alone predicts schizophrenia, but they are found to a greater degree in people who go on to develop the illness,” he states.
“In those with a family history who begin to show a decline in functioning and the emergence of any psychiatric symptoms in adolescence, there is definitely an increased risk of developing a psychotic episode within the next year. The same is true for people, even without a family history, who begin to have brief instances of psychotic symptoms, or other odd experiences, such as mild paranoid beliefs,” he explains. “Early intervention in this stage, called the prodromal period, can have important effects on long-term outcomes and even possibly on whether people develop schizophrenia at all.”
Stronger predictors of schizophrenia development are needed, Silverstein contends. “Preventing psychosis like we prevent heart attack should be our aim.”
The older you are when you have the first psychotic episode, the better the outcome will be, he says, because the individual has more coping skills and is more independent. “There is a biological vulnerability, but stress — for some just a little and for others a lot — is a major factor before a first psychotic episode and definitely before a relapse. Teaching patients coping skills and stress management definitely helps.
Although a few years ago, genetics research generated hope for an imminent understanding of the disease, it now appears as if there may be as many as 1,000,000 genes involved, each with a small degree of influence and it may be that no two people have the same genes involved. Therefore, we are still far away from knowing how genes lead to the disease. But Silverstein explains that if one parent has schizophrenia, the risk of a child having it is 10 percent; and if an identical twin has it, the risk is about 45 percent. Research has shown that the home environment is critical in determining whether the genetics are expressed. Those at genetic risk who are raised in problematic home environments have the highest risk of developing the disease.
Functional magnetic resonance imaging (fMRI) has shown that almost every part of the brain doesn’t function well in schizophrenia and many neurotransmitters are involved, but this has not helped in diagnosis or treatment of the disease.
But this expert remains positive. Recovery is definitely possible, he says, but it takes a long time. “Recent research indicates that two to five years after the first episode, only about 5 percent of people are functioning without symptoms and at the level they would have been at if the illness had not occurred. Most have some symptoms. Recovering fully takes years. And there are some who remain at a low level of functioning.”
Silverstein is determined to help young patients return to their lives. This is what he tells them: “If you are on medication, you must stay on your medication, although adjustments can be made based on side effects or changes in effectiveness. You also have to come in for psychological treatment, whether it is individual or group therapy, visits to discuss medication, family therapy, or other interventions. It’s also critical to avoid street drugs and alcohol, which can lead to bad judgment, dehydration and other negative effects. Other ‘wellness’ behaviors — such as yoga, meditation, regular exercise, journaling, socializing, and getting good sleep — are crucial. Treatment of schizophrenia requires a comprehensive approach.”
Research also indicates marijuana use increases the chance of having a psychotic episode for people with one specific genetic feature. Those with overactive cannabinoid receptors are vulnerable to a reduction in the brain’s ability to integrate information if marijuana is used. “Unfortunately, once the first psychotic episode occurs in marijuana users, avoidance will not necessarily prevent relapses,” he says.
The clinical psychologist encourages his patients to “learn all about the symptoms and warning signs, and have a plan in case these increase.” This can include calling him or other treatment providers, and talking to family and friends who are aware of the need to schedule appointments right away if a relapse seems likely.
Dr. Silverstein is working with the Foundation of UMDNJ to raise funds to support his schizophrenia research. If you are interested in helping, please contact: Denise Gavala, vice president for development, at (908) 731-6595 or email@example.com.
Preventing Relapse: A First in the Country
ilverstein and his colleagues at UBHC recently developed and opened the Facilitating Individualized Recovery through Supportive Treatment (FIRST) program, a specialized six-bed inpatient unit dedicated solely to the treatment of a first episode of schizophrenia or related form of psychosis. Patients generally spend one to two weeks on the unit, where a set of treatments is begun that the patient continues after discharge. State-of-the-art medication strategies (overseen by Unit Chief Jose Vazquez, MD) and a battery of assessment measures to screen for trauma history (common in schizophrenia patients but often overlooked), substance abuse history, depression, and cognitive impairment are completed right after admission. Psychological therapies — based on results of the assessment battery — are next. This unit, the first of its kind in the country, has staff trained specially in stress management strategies, helping patients to cope with and reverse delusional thinking, and “cognitive enhancement” therapies, addressing memory and attention problems.
Because many young patients react badly to being on an inpatient unit with older, more chronic patients, FIRST provides a less threatening alternative. Silverstein hopes this will increase the likelihood of patients staying in outpatient treatment after discharge. At present, the young patients can begin outpatient care at the Recovery After an Initial Schizophrenic Episode (RAISE) Clinic at UBHC, which is part of a nationwide study of post-hospitalization outpatient treatment for first episode patients.
Silverstein believes strongly that schizophrenia should be one of our country’s major health priorities, since it affects so many and treatment goes on for so long and is so costly. “Even in psychiatry,” he says, “few people choose careers that involve treating schizophrenia. It needs more attention, more research, and more and better trained staff.” Treating schizophrenia is estimated to cost $16 billion a year in the U.S, with another $16 billion in indirect costs, such as lost work productivity due to work absences in parents who are dealing with aspects of their child’s illness.
Among the to-dos on his priority list is setting up group therapies for basic social skills and more advanced ones, such as dating and intimacy. “We have to teach these young people social skills they never had or may have lost. This is also a way to motivate people to come to treatment — increasing the focus on problems they want to solve, instead of only focusing on reducing symptoms.”
“Amazingly, people with schizophrenia in this country, in 2011, live an average of only 56 years, about 25 years less than their peers without schizophrenia,” states the clinical psychologist.
“Life expectancy has increased for people with cancer and heart disease over the past 50 years, but not for people with schizophrenia,” he concludes. “We need more research, greater public awareness and more funding for adequate treatment. We need to make a bigger impact.”