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, which provide 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.
Medication for Schizophrenia
“One of the most important advances in the treatment of schizophrenia over the last half century has been the discovery of antipsychotic medications that reduce the troubling symptoms of the disorder and give people the chance to live normal lives,” Irene Levine, also a psychologist, said.
Unfortunately, there are many misconceptions about medication and “stigma attached to taking medications for a mental disorder as compared to taking them for physical problems,” she added. However, medications form the “foundation on which the recovery process is built,” Velligan said. “With good medication on board, individuals can turn their attention to improving their quality of life and attaining their recovery goals.”
Are some medications better than others? According to Levine, the second generation antipsychotics are “no better or worse” than the first generation. Almost all antipsychotics have similar efficacy. The main difference is in the side effects: “The older drugs give rise to movement disorders, while the newer ones set the stage for weight gain and metabolic side effects.” (For more on antipsychotic medications, see here and here.)
Finding the right medication or combination of medications is a complex and highly individual process. It’s often a balancing act between making sure the patient experiences benefits and doesn’t experience intolerable side effects. “Just like blood pressure or cholesterol-lowering drugs, medications for schizophrenia may have to be changed, increased, decreased and tinkered with for optimal results,” Irene Levine said.
Still, patients may get frustrated and want to stop taking their medication. “Many clinicians use too low or too high a dose, or combine many medications at once in the absence of any evidence for a clear benefit,” which can worsen schizophrenia and side effects, Dr. Rose said.
Tips for Taking Medication
When taking medication, keep the following in mind:
- Become an active participant. Watching your treatment — or the treatment of a loved one — on the sidelines doesn’t help anyone. Taking an active role leads to more successful treatment.
- Educate yourself. Whether you or your loved one has schizophrenia, educate yourself “about the various drugs and potential side effects,” Irene Levine said. Invest the time in learning everything you can about these medications. But, if you come across personal experiences (whether the accounts concern pharmacological or psychosocial treatments), keep in mind that this is an idiosyncratic experience, Dr. Drake said. So don’t rule out a certain medication or treatment because of negative information but do raise the concerns to your provider and do more research.
- Be sure it’s a partnership. Because finding the best balance is already a hard process, not having a provider you trust can make it even harder, Dr. Drake said. Make sure that your provider welcomes a collaborative relationship with patients.
- Create a medication list. Keep an updated list of your medications handy. Your list should include “all medications taken, the length of time they were taken, the dose and the adverse effects,” Dr. Torrey writes in Surviving Schizophrenia.
- Create a wish list. Another excellent tip from Dr. Torrey: Write out a list of things you wish you could do but that schizophrenia prevents you from doing. What did you do prior to your illness that you wish you could do again? On your list, you might write “read a book, go into a crowded room without panicking, hold a job at least half-time, have a boyfriend,” Dr. Torrey writes. Essentially, this list includes goals you’d like to attain with the help of medication and other treatments. The list serves as a reminder of why you’re taking medication and why you’re open to trying new medications to improve symptoms, he writes.
- Take medication as prescribed. Do you forget to take your medication? “You don’t want (the prescribing physician) to raise the dose because you forgot to take the pills half the time,” Velligan said. Have you decided to stop taking them altogether?
- Speak up. Maybe you’ve stopped taking your medication because it just doesn’t feel right. Maybe you’re experiencing bothersome side effects. “Communicate with doctors on an ongoing basis to make sure that the medications are safe and effective,” Levine said. “Consumers and doctors constantly need to evaluate medication regimens and weigh the pros and cons of any treatment.”
- Create reminders. “No one is very good at remembering to take every dose of medication,” Velligan said. To stay on track, find reminders that work for you. Velligan suggests pill containers, voice alarms, signs and checklists.
Schizophrenia and Substance Abuse
Almost 50 percent of individuals with schizophrenia suffer from substance abuse, such as alcohol and nicotine. Research has shown that patients with dual diagnoses are more susceptible to severe symptoms, higher rates of hospitalization, illness, violence, victimization, homelessness, medication noncompliance and poor response to medication. Conventional antipsychotics don’t seem to help; research shows that individuals with dual diagnoses seem to have a tougher course than those without substance abuse (see Green, Drake, Brunette & Noordsy, 2007).
Integrated Dual Disorder Treatment (IDDT) is one option. It treats both disorders simultaneously and has been shown to be highly effective. Unfortunately it isn’t readily available. If you’re having issues with substance use or suspect your loved one is, talk to your primary provider about getting a proper evaluation and treatment services.
A relapse occurs when symptoms worsen or reappear. Here are some ways you can reduce your risk of relapse:
- Stay on medication. Medication is the cornerstone of treatment, and discontinuing use without informing your physician is dangerous.
- Talk to the team. Ask your psychiatrist, case manager, therapist and other providers you’re working with how to avoid a relapse. They should have many preventative tips.
- Be aware of warning signs. Watch out for general warning signs, unique-to-you precursors and changes in sleeping and eating patterns. For instance, bad relationships may trigger a relapse for one person, whereas excessive sleep and desire for isolation do for another.
- If a relapse happens, know what to do. Talk with your providers about the best ways to manage a relapse should it happen.
- Stay in regular contact with clinicians. Others will usually pick up on the warning signs before you do, so even when “symptoms are in remission and function is good,” stay in contact, Dr. Rose said.
- Stay in contact with your support system. Stress is a risk factor for relapse. Dr. Rose suggested staying involved with loved ones as much as possible.
Disclosing Your Diagnosis
Should you tell others about your diagnosis? According to Velligan, you may want to tell close family and friends, who can “participate in groups that provide education about the illness and how to help their (loved one) manage symptoms.” Telling employers is an “individual decision.” Velligan suggested informing employers in a supported employment program, because the employer will be more willing to work with the employment specialists to help you improve your job performance.
“This is a time of great hope for individuals” with schizophrenia, said Velligan. “There are many new medication treatments and psychosocial treatments that work to improve a broad range of outcomes.”
Green, A.I., Drake, R.E., Brunette, M.F., & Noordsy, D.L. (2007). Schizophrenia and co-occurring substance use disorder. The American Journal of Psychiatry, 164, 402-408.
- Schizophrenia and Related Disorders Alliance of America (SARDAA) lists an extensive array of resources.
- The Schizophrenia Patient Outcomes Research Team (PORT) Treatment Recommendations features suggestions on schizophrenia treatment based on scientific studies.
- SZ Digest, which was started by Bill MacPhee, who was diagnosed with schizophrenia at 24 years old.
- Schizophrenia Society of Canada
- National Alliance for Research on Schizophrenia and Depression
- Active Minds
Helpful Hints About Schizophrenia for Family Members & Others
Tartakovsky, M. (2015). Living with Schizophrenia. Psych Central. Retrieved on May 1, 2016, from http://psychcentral.com/lib/living-with-schizophrenia/