Living with Schizophrenia
“Your daughter has schizophrenia,” I told the woman.
“Oh, my God, anything but that,” she replied. “Why couldn’t she have leukemia or some other disease instead?”
“But if she had leukemia she might die,” I pointed out. “Schizophrenia is a much more treatable disease.”
The woman looked sadly at me, then down at the floor. She spoke softly. “I would still prefer that my daughter had leukemia.”
“This book is a product of a thousand such conversations,” writes research psychiatrist and schizophrenia specialist E. Fuller Torrey, M.D., in Surviving Schizophrenia: A Manual for Families, Patients And Providers. Getting a diagnosis of schizophrenia can be devastating. Families and patients alike think there’s no hope. What follows may be shock, shame and confusion. But schizophrenia isn’t a death sentence or an inevitable descent into psychosis and violence, as some movies and shows would have you believe. Even though it may be terrifying, receiving a proper diagnosis is a good thing: It’s one step closer to the right treatment.
“Earlier treatment and shorter duration of untreated psychosis is associated with better treatment response, less likelihood of relapse and better clinical outcome,” said Sandra De Silva, Ph.D, psychosocial treatment co-director and outreach director at the Staglin Music Festival Center for the Assessment and Prevention of Prodromal States (CAPPS) at UCLA, departments of psychology and psychiatry.
Here’s a look at what effective treatment for schizophrenia entails, how you can manage the disorder, and what to do if you notice early warning signs.
Early Diagnosis of Schizophrenia
Schizophrenia rarely occurs unexpectedly. Instead, it produces a gradual decline in functioning. There are usually early warning signs, referred to as the “prodrome,” which last one to three years, and provides the perfect place to intervene.
Early symptoms are the same as in psychotic illnesses, but “they are experienced at a milder, subthreshold level,” De Silva said. The key symptoms to look for are “suspiciousness, unusual thoughts, changes in sensory experience (hearing, seeing, feeling, tasting, or smelling things that others don’t experience), disorganized communication (difficulty getting to the point, rambling, illogical reasoning) and grandiosity (unrealistic ideas of abilities or talents),” according to De Silva. Just one of these symptoms is the “greatest predictor of psychosis to date — greater than having a parent with schizophrenia,” she said. In fact, according to recent research, 35 percent of individuals who presented with one of these symptoms developed psychosis within 2.5 years. Substance use, such as alcohol and marijuana, also has been shown to boost risk.
Early Intervention for Schizophrenia
So what can you do if you think your loved one is showing these early signs? There are various prodromal clinics in the U.S. and some abroad that offer services — usually including regular evaluations and treatment — for at-risk youth and their families. At De Silva’s clinic, CAPPS, individuals from 12 to 25 years old get a diagnostic screening, assessments, and case management at no charge. Early treatment aims to reduce the risk of developing schizophrenia, delay its onset (which research shows has a better prognosis), decrease severity after onset, and improve outcomes in all areas, De Silva said.
Treatment of Schizophrenia
“The longer an illness is left untreated, the greater the disruption to the person’s ability to study, work, make friends, and interact comfortably with others,” De Silva said. A combination of treatments is best for individuals with schizophrenia. Medication is the mainstay of treatment, “used to minimize hallucinations, help the individual think more clearly, focus on reality, and sleep better,” according to Dawn Velligan, Ph.D, professor and co-director of the Division of Schizophrenia and Related Disorders at the Department of Psychiatry, UT Health Science Center at San Antonio . However, “decades of research have shown that psychosocial treatments “are also important in improving symptoms and quality of life,” she added.
Team-based care also is pivotal. A treatment team may include a psychiatrist, licensed therapist and case manager. There are many other professionals who may help, including psychiatric nurses, vocational therapists, and rehabilitation therapists. When building a team, Robert E. Drake, M.D., Ph.D, professor of psychiatry and of community and family medicine at Dartmouth Medical School, suggests keeping in mind people who will:
- Serve as the primary contact person to help patients navigate through the system
- Help patients achieve functional goals (e.g., finding an apartment and job)
- Ensure patients get good medical care, understand medication options, and learn to use them appropriately
- Treat co-occurring problems.
Substance abuse is the most common co-occurring disorder in individuals with schizophrenia, but physical health conditions also may be present. Try to find the appropriate professional to treat the co-occurring issues.
- When looking for a psychiatrist, search out professionals who specialize in schizophrenia. Ask other families or professionals, like your primary care physician, write Irene S. Levine, Ph.D, and Jerome Levine, M.D., in Schizophrenia for Dummies. You can find families at the National Alliance for the Mentally Ill (NAMI) by checking out your local affiliate. Also, check with the psychiatry or psychology department of a local university or medical school. Visit two to three different providers and ask them about available resources, their outcomes, their team (i.e., do they have a typical team of professionals they work with? How do they put together a team?) and what they can do for you, Dr. Drake said.
Psychosocial Treatments for Schizophrenia
Because “mental illnesses are compounded by a cascade of personal losses — including friendships, work opportunities, and a place to call home — effective treatment requires addressing the needs of the whole person and listening to their hopes and dreams,” Irene Levine said. Helpful treatments may include the following:
- Cognitive Remediation/Related Treatments. While hallucinations and delusions can be devastating, it is the cognitive decline — problems with memory, attention, problem solving, processing information — that complicates daily life. Because medication doesn’t treat problems with attention, concentration, and memory, treatments that address these issues are vital. Cognitive remediation strives to strengthen patients’ cognitive skills, helping them “pay attention, remember, process information, and plan better,” Velligan said. This is usually done with cognitive exercises and compensatory behaviors (things like checklists that help individuals compensate for memory loss). For instance, Demian Rose, M.D., Ph.D, medical director of the University of California, San Francisco PART Program and director of the UCSF Early Psychosis Clinic, and his research team have developed a cognitive training software package that’s shown good results. Velligan and colleagues use environmental supports — tools that help manage the day-to-day, like checklists, signs, pill boxes, and alarms — in their program, Cognitive Adaptation Training, “to bypass cognitive impairments” and help with taking medication, grooming, housekeeping, managing money, and participating in leisure activities.
- Family psychoeducation. Families may be confused about schizophrenia and what they can do to help their loved one. “Supportive families can be a godsend for people with schizophrenia. They function as de facto case managers, filling in the gaps of the fragmented system that exists in many communities,” Irene Levine said. Family psychoeducation gives families an accurate understanding of schizophrenia and teaches them how to help.
- Individual psychotherapy. This can take many forms, such as a cognitive-behavioral approach. Dr. Rose recommends individual therapy for various reasons. For one, by the time most individuals have been diagnosed with schizophrenia, they have many problems with relationships. Also, individual therapy gives patients a better understanding of their own symptoms. “I see so much suffering and misunderstanding purely because no one has told (patients) what’s going on,” Dr. Rose said.
- Cognitive-behavioral therapy (CBT). Though using CBT to treat schizophrenia is fairly new, research has shown that it holds promise, according to Dr. Rose. In addition to grasping their symptoms, CBT helps individuals set goals, form new ways of relating to people, examine and challenge persistent beliefs, and cope with hallucinations.
- Supported employment. This program helps individuals find a job based on preferences and abilities and usually assists with training and any issues that may come up on the job. For ideas on what questions to ask, this handbook (in PDF format) offers a detailed questionnaire.
Tartakovsky, M. (2020). Living with Schizophrenia. Psych Central. Retrieved on March 28, 2020, from https://psychcentral.com/schizophrenia/living-with-schizophrenia/