The first sign of psychosis is usually withdrawal. A teenager or young adult, often someone who’s had no prior emotional or behavioral issues, begins to be less engaged with what’s going on around him. Instead of school, work, friends, family and fun, he is preoccupied with what’s going on internally, increasingly fixated on disturbing ideas that are bubbling up.
He’s being monitored by the FBI. There’s a chip implanted in his brain. His parents are trying to poison him. He begins seeing and hearing things that others don’t see and hear, and becomes suspicious even of people he is closest to. In turn, his speech and his behavior no longer make sense to them.
This is a psychotic break — when someone loses touch with reality, experiencing delusions (false beliefs) or hallucinations (seeing or hearing things that are not there) and what’s called “disorganized” speech. In the United States, about 100,000 teenagers and young adults each year experience a first episode of psychosis, with the peak onset between the ages of 15 and 25.
A first psychotic break is terrifying both for the person experiencing it and those who are close to him, says child and adolescent psychiatrist Michael Birnbaum. Neither understands what’s happening. “Behavior can drastically change in a very scary way. People stop communicating in the same way. The way they use words and sentences to express what they’re thinking becomes totally disorganized.”
A person experiencing a psychotic episode usually ends up in the hospital when his behavior escalates to a point of crisis. “Sometimes people are picked up by the police,” says Dr. Birnbaum, who is an expert in first episode psychosis. “Sometimes parents or teachers are so frightened that they call 911.”
Breakthrough psychosis treatment
The most common cause of psychosis is a psychiatric disorder: schizophrenia or, less often, bipolar disorder or severe depression. Psychosis can recur episodically with these illnesses, severely undermining a young person’s developing sense of self, along with school, work and relationships. But there’s substantial good news in the treatment of psychosis: evidence shows that treatment after the initial episode can dramatically reduce the number and intensity of future recurrences.
The right treatment within the first two to three years after the first episode has been shown to decrease relapses of psychosis by more than 50 percent and prevent much of the disability associated with a psychotic illness.
“The earlier we intervene, the better the outcome,” says Dr. Birnbaum. “This is the take-home message. Get help as soon as possible.”
What is early treatment?
Dr. Birnbaum is director of an early treatment program for teenagers and young adults who’ve experienced psychotic symptoms for the first time. The program has two locations, at Zucker Hillside Hospital in Queens, New York, and at Lenox Hill Hospital in Manhattan. The specialized treatment that’s offered in centers like Dr. Birnbaum’s has proven so successful that the federal government earmarked $25 million to aid development of these programs across the country — and then doubled it to $50 million.
Patients generally enter these early treatment programs following their release from the hospital. In the hospital they’ve been given medication that reduces their symptoms, but they may not be symptom-free, since anti-psychotic medication takes 6 to 8 weeks to take full effect. So even if they’re considered safe to go home, Dr. Birnbaum explains, patients and their families both have a lot to deal with. Getting into an outpatient program as soon as possible helps them do just that.
The treatment that has been shown to be successful, called Coordinated Specialty Care, involves a combination of services coordinated by a group of professionals working with the patient and the family. They include:
- Low doses of antipsychotic medication
- Cognitive behavioral therapy for psychosis (CBTp)
- Family education and support
- Educational and vocational rehabilitation
Unlike the old standard treatment for schizophrenia, which involved higher doses of medication and no follow-up after hospitalization, the goal of early treatment is not only to reduce psychotic symptoms, but also to help young people learn to manage them and to construct a support network to prevent relapse.
A team approach
At Zucker Hillside, after an extensive initial assessment, patients meet once a week with a therapist for a session of CBTp, which is aimed at helping them handle ongoing symptoms and develop healthy coping strategies. For example, a patient might work on identifying delusional beliefs, figuring out strategies for “reality testing” them, and coming up with alternative, more helpful ways of thinking.
Patients are each assigned to a psychiatrist on staff, who monitors their medication to make sure they’re getting the most benefit, at the lowest dose, with the fewest problematic side effects.
The team also works with families, who are essential to recovery. Young people who’ve experienced psychosis do better when families support their keeping appointments, taking their medications and eating, sleeping and taking care of themselves. These are important skills, since stress can trigger a relapse. Parents also learn how to respond when a son or daughter talks about aliens and the FBI — “how to express love without supporting delusions,” as Dr. Birnbaum puts it — and skills for dealing with a crisis and with suicidality.
Finally, staff members work with patients to get them back on track with school and work. “We don’t want people to assume the role of a sick person,” Dr. Birnbaum notes. “We want them to go back to school despite having these obstacles. Go back to work despite having a temporary handicap. The idea is that this is a bump in the road that we can get over. The best way to start feeling better is to start doing things again.”
At Zucker Hillside there is also an assortment of groups to build recovery skills and encourage exercise and social interaction. And there are competitive game nights to help strengthen cognitive functions such as memory and processing speed, which can be weakened in the wake of a psychotic episode. “Some people feel that their brain just isn’t working the way it used to,” Dr. Birnbaum says.
Some activities are designed to make staying in treatment attractive for young patients, so they remain long enough to get the benefit of early intervention.
Empowering the patient
After an episode, some patients are quickly back to normal, with medicine, while others continue to have psychotic symptoms, but at a less acute level. Delusions and hallucinations might not go away completely, but they are less intense, and the patient can give them less weight and learn to manage them, Dr. Birnbaum says. “They’re in the back of their minds, rather than at the front.”
Patients also vary in their receptiveness to therapy and taking medication. An important part of the program is empowering the individuals who are being treated to participate with the professionals in joint decision-making about their treatment.
“Young people who don’t want to take medication don’t have to,” says Dr. Birnbaum. “We strongly encourage it. I know the medication is incredibly helpful. But it’s an individual decision how much medication they want to take for how long.”
Patients who’ve been taking medication may decide they want to try a lower dose, or go off meds, to see if their symptoms will return. The team approaches it as an experiment, a learning opportunity. Sometimes symptoms don’t return, and the patient stays at the lower dose; other times they do, and the patient will ask to go back to the higher dose.
“I would rather have these open and honest discussions than have them say, ‘Yes doctor, I’m taking the medication,’ and then go home and not take anything — lie to me about it. Or just disappear and don’t come back.”
A message of hope
Part of the goal of early treatment is to eliminate the stigma attached to schizophrenia, and to show patients, and their families, that it is a more manageable illness than they may think. Patients “graduate” from the Early Treatment Program at Zucker Hillside when they have a good grasp of their illness and they know what they need to do to stay better.
The national initiative to expand these programs aims to change not only the model of treatment but to send a message of hope and optimism.
What Dr. Birnbaum calls “the old story” of schizophrenia was a grim one. But thanks to early intervention programs there is a new story that recovery is possible. These programs are designed, as he puts it, “to stop mental illness in its tracks before it has a chance to take over somebody’s life.”
To find an earlySt treatment center near you, check out the list of programs around the country compiled by Strong 365, a group that aims to fight stigma surrounding psychosis and encourage more young people to get early treatment.