Schizophrenia is a severe mental illness that is characterized by hallucinations, delusions, and disorganized thought and speech patterns. It typically emerges between the ages of 15 and 25. With the severity of symptoms and the time of onset — during key developmental years when individuals are pursing educational, work, or relationships goals — the illness typically results in severe disruption to development. Schizophrenia is one of the top 15 leading causes of disability, according to the National Institute of Mental Health (NIMH).
The Importance of Support Teams in Schizophrenia Care
A support team is crucial due to the severity of the illness, says Linda Stalters, founder and CEO of the Schizophrenia and Related Disorders Alliance of America (SARDAA) and an advanced practice registered nurse psychotherapist. “It’s a challenging illness,” she says. “It puts a person in a place where they are frightened. They don’t know perhaps what is happening to them. The symptoms cause paranoia and delusions. They need people to provide understanding and support and encouragement and hope.” In recent years, mental health advocates and healthcare professionals have worked to establish programs to help people with schizophrenia live healthier lives and form support teams, said Ken Duckworth, MD, medical director for the National Alliance on Mental Illness (NAMI) and an assistant clinical professor at Harvard University Medical School in Boston. “There are services out there. The challenge many people find is that services vary by geography or zip code,” he says. “I encourage people to contact their local NAMI to see what services are available in their area.”
Establishing a Care Team for a Person With Schizophrenia
Care teams can help people with the disease manage their day-to-day lives. Individuals with schizophrenia need to be aware of stress and triggers that can contribute to worsening symptoms. They often benefit from assistance in managing meal and sleep schedules and maintaining social connections, according to NAMI. People with schizophrenia “need to make sure they keep taking their medicines,” Stalters says, adding that a person with a serious mental illness such as schizophrenia, bipolar disorder, or schizoaffective disorder can quickly slide into relapse if they miss a few days of medication. What’s more, she says, “They often can’t recognize that they’re ill.”
Create a Care Team as Soon as There Is a Diagnosis
Care teams should be formed as quickly as possible at the time of diagnosis, experts say. The term coordinated specialty care (CSC) is often used to describe programs for patients following treatment for the first episode of psychosis. This team includes medical support, case management, employment and educational support and family education and support. The patient and support team work together to make decisions regarding treatment and care, according to NIMH. Coordinated specialty care has shown to be more effective at preventing relapses, reducing symptoms, and improving patients’ quality of life, says NIMH. Patients and their families can find a CSC program by going to the RAISE (Recovery After an Initial Schizophrenia Episode) webpage (click on “Patients and Families”), sponsored by NIMH.
The Role of Family Members in Schizophrenia Management
Family support is an essential part of the support team, Duckworth said. According to NAMI, it’s helpful to tell family members and friends about the illness in order to receive their encouragement and for assistance with specific needs, such as transportation to doctor or therapist appointments. Family support has been shown to make a significant difference for patients. People in families with high levels of criticism, hostility, and over-involvement have more frequent relapses, according to research published in the Cochrane Database of Systemic Reviews.
How Family and Friends Can Help People Living With Schizophrenia
According to NAMI, family members and friends can help patients by learning such skills as responding calmly to the patient, watching for behavioral triggers, helping the patient manage medication and helping the patient avoid illicit drugs or alcohol. Programs exist to help family members provide such support. The NAMI Family-to-Family is a free educational program for family, significant others and friends of people with mental health conditions. The 12-session program is based on scientific research demonstrating the most effective methods for coping and problem-solving. The course, which is taught by NAMI-trained family members, includes presentations, discussions, and interactive exercises. Several studies comparing people who completed the Family-to-Family program have demonstrated its value, Duckworth said, citing research published in the Journal of Marital and Family Therapy.
How to Find Family-to-Family Therapeutic Programs
“This program is provided in virtually every city in American for free,” he says. “There are a couple of very good studies showing it helps families be more supporting, hopeful, and the families cope better.” In addition, the RAISE program features resources to help patients, family members, and friends with education and support.
Friendships Make a Difference in Support of Well-Being
A support team should include friends, too, Duckworth says. Maintaining friendships can be a challenge for people with schizophrenia because the onset of the disorder is often at a time of life when peers are especially important. Social isolation is one of the early hallmarks of the disorder.
Social Isolation Can Be Problematic for People With Schizophrenia
“Sometimes people with schizophrenia feel they have fallen behind their friends, and they feel shame about that,” Duckworth says. “Their friends are going off to college and they aren’t. Isolation is bad for humans in general.”
Where to Find Peer Support for People Living With Schizophrenia
The Clubhouse International peer movement addresses that problem. Their programs, which number more than 300 in 30 countries worldwide, provide services for people living with mental illness, including friendship and socialization. Joining a support group can be extremely helpful, experts say. NAMI Connection is a free, peer-led support group for any adult who has a mental health condition. Such groups foster a sense of shared experience, hope, and connection, according to NAMI experts. Patients often learn from each other and become more empowered in dealing with the disease. “There are hundreds of community programs where people with mental health challenges can be accepted as part of a community,” Duckworth says. “These are peer groups. There are other people like you. For example, you can learn to cook or go to a show together.” SARDAA helps people with schizophrenia and related disorder connect to a support group or start a new one. “People say ‘When I’m with my group or with my peers, I feel like I’m talking to someone who speaks my language. I’m connected to them and I can share things with them that I might not be able to share with clinician or my family,’” Stalters says. “Our groups are very autonomous because the basic principle is we want people to feel empowered and have hope. It just takes two people to have a group.”
