For much of last summer, Kristen Simcoe would arrive home to find her 21-year-old son, Trevor, sitting alone in their basement in Champlin with blinds drawn against the late-afternoon sun.
When she asked why the room was so dark, he would mumble quietly about people outside stalking him. “They are trying to see me,” she recalls him saying.
Months later, psychiatrists uncovered the root of Trevor’s increasingly paranoid and anti-social behavior: He was showing early symptoms of schizophrenia, considered the most debilitating of mental illnesses.
That diagnosis, in years past, would have set off a desperate hunt for professional help and conjured images of homelessness, joblessness and incarceration. But the Simcoes are among the early beneficiaries of a new approach to treating psychosis in its early stages — one focused on empowering people to regain their regular lives before symptoms spiral out of control.
Unlike traditional outpatient therapy, which generally provides only drugs and psychotherapy, the new approach provides coordinated, team-based services designed to help young people re-engage with the community and lead productive lives after psychotic episodes.
With nearly $3 million in federal funds, Hennepin County Medical Center (HCMC) and the University of Minnesota this spring quietly rolled out early psychosis treatment programs based on this new, more intensive model of care. The goal is helping people mostly in their teens and 20s come back from a psychotic “break,” often marked by deep paranoia, confusion and disconnection from reality.
While only 1 percent of the population has schizophrenia, the disease can have devastating consequences if left untreated. Research shows it accounts for 30 percent of all mental health spending in the United States.
“We are trying to flip the system on its head,” said Piper Meyer-Kalos, a clinical psychologist at University of Minnesota spearheading the U’s new early psychosis treatment program, which launched in March. “We start by building on people’s strengths ... so they can find purpose in their lives and improve their overall well-being.”
The new programs are starting modestly, with only about 100 young patients in the Twin Cities. But they represent the most targeted and rigorous effort in the state’s history to combat the effects of early psychosis, state health officials said. The initiatives are based on national research showing that intensive, team-based therapy and social services produce better results than standard treatment, which for many patients consists of medication and sporadic visits to a clinic.
The programs also mark a major step for Minnesota in catching up with much of the country in developing psychosis treatment programs for young people. In recent years, Minnesota’s mental health system fell behind as most other states rapidly expanded early psychosis programs — motivated in large part by a desire to reduce longer-term costs associated with treating and incarcerating adults with schizophrenia.
“If you don’t treat [psychosis] in young people, they end up in the criminal justice system or homeless, and they end up costing us a lot more in other ways,” said Sue Abderholden, executive director of the National Alliance on Mental Illness of Minnesota, a proponent of early psychosis treatment programs.
Typically, families of young people struggling with the early onset of psychosis can only get help by navigating a fragmented maze of specialty care clinics, treatment plans and eligibility requirements. An initial visit to see a psychiatrist and be prescribed vital medications can take up to two months.
A person in the acute stage of a psychotic episode may be experiencing delusions and suicidal thoughts, and clinicians say that every day the psychosis goes untreated brings the person further from reality and more resistant to help.
“It’s literally a race against time,” Meyer-Kalos said.
The new model being deployed by the U and HCMC is more focused and labor-intensive. It involves teams of up to five people, including social workers and clinicians, who help people reconnect with the community and rebuild relationships. The teams help participants find meaningful work, make accommodations at school and manage medications. Clinicians even make house visits, talking to patients and their families at home, encouraging extra counseling or treatment if needed.
“It’s truly a one-stop shop of coordinated care,” said Scott Curran, a family clinician and director in the university’s new program.
As with treatment of other ailments, speed is critical. Recent research by the National Institute of Mental Health found that patients with early psychosis who receive coordinated, team-based care perform “markedly better” than those who receive standard treatment. These effects are more pronounced for those who are treated early.
For the Simcoes, the multidisciplinary approach has been a breakthrough for Trevor, now 22. Last year, the once-gregarious young man became increasingly withdrawn, convinced that people were following him and reading his thoughts. The paranoia made it difficult for him to concentrate and cost him his job as a school janitor. His anxiety reached a breaking point last fall, when he isolated himself in his room for days at a time and refused to eat or drink.
“It interferes with everything you do, when people around you are hearing your thoughts and judging you, and nothing you do can get them to stop,” Trevor said in a recent interview.
But since enrolling early this year in HCMC’s new program for treating early psychosis, Trevor has begun attending North Hennepin Community College with the regular help of a social worker who meets him at school and helps him through classes. While delusional thoughts persist, a psychologist on his treatment team has taught him coping skills for when he starts thinking that others are reading his mind, his mother said. Every two weeks, the Simcoes attend group therapy, where they talk through tensions in the family and obstacles to recovery.
“It’s been a life saver,” Simcoe said. “My son is actually doing something he wants to do for the first time in a long while and getting on with his life.”