FAQ

Schizophrenia affects the way your brain processes information and can change how you feel, think and behave. You may even see or hear things that others don’t. Over time, you can become unmotivated and feel isolated from friends and family. This can make living with schizophrenia challenging for those with schizophrenia and their loved ones.

Learning to live with schizophrenia involves working closely with your healthcare team, learning about the condition, its treatment and where to find the support you and your loved ones may need.

https://www.webmd.com/schizophrenia/living-with-schizophrenia-directory Accessed 7 March 2022.

Fortunately, advances in medication and treatment can make living with schizophrenia more manageable. With the right support, someone with schizophrenia can lead a full and rewarding life, find meaningful work and fulfilling relationships, with a quality of life similar to people without schizophrenia.

Marder SR, Freedman R. Learning from people with schizophrenia. Schizophr Bull. 2014;40(6):1185-1186.
https://academic.oup.com/schizophreniabulletin/pages/first_person_accounts Accessed 7 March 2022.
Fagiolini A. Getting to remission: managing transition in care to improve outcome in schizophrenia. Advances in schizophrenia, Rome 2021

To help you learn to live with schizophrenia, your healthcare team can work with you to create a person-centred treatment plan. This sets out treatments with the overall aims of reducing or stopping symptoms, promoting and maintaining recovery, and ensuring you have the best possible life skills and quality of life. A treatment plan is customized to your own personal goals.

Keepers GA, Fochtmann LJ, Anzia JM, et al. The American Psychiatric Association Practice Guideline for the Treatment of Patients with Schizophrenia Am J Psychiatry. 2020;177(9):868-872.

Treatments include antipsychotic medications, which should be continued, even after symptoms improve. And, depending upon your condition, other interventions may be recommended.

• Psychoeducation
  Provides information and support to help you and your family better understand and cope with schizophrenia as well as teaching problem-solving and communication skills.
  
• Cognitive remediation therapy
  Thinking skills training.
  
• Cognitive behavioural therapy (CBT)
  Talking therapy that can help you manage your problems by changing the way you think and behave.

Exercise programs

Physical exercise has significant benefits in schizophrenia, including improvements in clinical symptoms, functioning, quality of life and depressive symptoms.

Depending on where you live, there may be other support services and networks available that can also help. Click here for further details.

Keepers GA, Fochtmann LJ, Anzia JM, et al. The American Psychiatric Association Practice Guideline for the Treatment of Patients with Schizophrenia Am J Psychiatry. 2020;177(9):868-872.

Vita A, Barlati S, Ceraso A, et al. Effectiveness, Core Elements, and Moderators of Response of Cognitive Remediation for Schizophrenia: A Systematic Review and Meta-analysis of Randomized Clinical Trials. JAMA Psychiatry. 2021;78(8):848–858.

Girdler SJ, Confino JE, Woesner ME. Exercise as a Treatment for Schizophrenia: A Review. Psychopharmacol Bull. 2019 Feb 15;49(1):56-69.

Schizophrenia remains a chronic illness meaning that people don’t completely recover to the point of not needing psychiatric services or any medication.

Fagiolini A. Getting to remission: managing transition in care to improve outcome in schizophrenia. Advances in schizophrenia, Rome 2021.

With schizophrenia, recovery generally relates to long-lasting and meaningful improvement as well as a reasonable quality of life. It involves being able to function independently (work/school, social relationships, independent living, requiring little or no support) and a personal sense of wellbeing. More simply, recovery in schizophrenia means living a functional, rewarding life in the community, similar to someone without schizophrenia.  

Novick D, et al. Schizophr Res 2009 Mar;108(1-3):223-30. 

Correll CU, et al. Clin Ther 2011; 33(12): B16-39.

Fagiolini A. Getting to remission: managing transition in care to improve outcome in schizophrenia. Advances in schizophrenia, Rome 2021.

With the right treatments and support, people with schizophrenia can and do recover. Over time, most people either recover or improve to the point where they can work and live on their own. Being able to interact with other people (social functioning) and staying on antipsychotic medication improves the chances of recovery.

https://www.webmd.com/schizophrenia/schizophrenia-outlook. Accessed 7 March 2022.
Vita A, Barlati S. Recovery from schizophrenia: is it possible? Curr Opin Psychiatry. 2018 May;31(3):246-255.
https://library.neura.edu.au/schizophrenia/illness-course-and-outcomes/remission-and-recovery/
Carbon M and Correll CU. Dialogues Clin Neurosci 2014; 16: 505-524.
Novick D, et al. Schizophr Res 2009 Mar;108(1-3):223-30

Schizophrenia impacts not only people with the disorder but also their families. Uncertainty about diagnosis, treatment and the future can trigger high levels of anxiety and stress within the family. And, all this adds to the burden.

Caqueo-Urízar A, Rus-Calafell M, Urzúa A, Escudero J, Gutiérrez-Maldonado J. The role of family therapy in the management of schizophrenia: challenges and solutions. Neuropsychiatr Dis Treat. 2015 Jan 14;11: 145-51.

Depending upon where you live, mental health services may be able to provide support to families of people with schizophrenia so, if possible, take the opportunity to engage with them for assessment of your own needs and to discuss your strengths and views, and develop your own personal care plan to address your needs.

https://www.nice.org.uk/guidance/cq178/chapter/1-Recommendations#support-for-carers

Families can be involved as partners in care. A ‘triangle of care’ is encouraged between the person with schizophrenia, their relatives and their healthcare team.

Burbach FR. BJPsych Advances 2018; 24: 225-234. doi: 10.1192/bja.2017.32

Family interventions, also called family psychoeducation programs, have been developed as a collaborative approach to information sharing and to provide training in coping, communication and problem-solving skills so that the family may better support their relative’s recovery.

Even if you think your family doesn’t need or want lengthy interventions such as those offered through family psychoeducation, brief educational interventions with a focus on information sharing about the illness, early warning signs and relapse prevention as well as practical resources and support may be useful.

Harvey C. Family psychoeducation for people living with schizophrenia and their families. B J Psych Advances 2018; 24 (1): 9-19. doi:10.1192/bja.2017.4

For people with schizophrenia, family psychoeducation may reduce the risk of relapse and help them to consistently take their medication as prescribed. It can also make family life less burdensome and tense and may prevent re-hospitalization.

Pharoah F, Mari J, Rathbone J, Wong W. Family intervention for schizophrenia. Cochrane Database Syst Rev. 2010;(12):CD000088. Published 2010 Dec 8. doi:10.1002/14651858.CD000088.pub2

Family psychoeducation had considerable positive effects on relatives’ burden and psychological distress, the relationship between relatives and the person with schizophrenia, and family functioning.

Harvey C. Family psychoeducation for people living with schizophrenia and their families. B J Psych Advances 2018; 24 (1): 9-19. doi:10.1192/bja.2017.4

Family psychoeducation programs also reduce the stigma associated with mental illness. Stigma is the most challenging care responsibility in families of people with mental illness. And, unsurprisingly, stigma has been shown to have a negative impact on those with schizophrenia.

Vaghee S, et al. Effects of Psychoeducation on Stigma in Family Caregivers of Patients with Schizophrenia: A Clinical Trial. Evidence Based Care Journal 2015; 5 (16): 63-76.

Morgan AJ, et al. Interventions to reduce stigma towards people with severe mental illness: Systematic review and meta-analysis. Journal of Psychiatric Research. 2018; 103: 120-33.

It’s important to consider that schizophrenia can impair a person’s ability to understand or recognize their condition. This lack of insight is not due to denial, defensiveness, or stubbornness but is a symptom of the condition itself and can be the reason why they refuse medication or do not seek treatment.

https://www.treatmentadvocacycenter.org/key-issues/anosognosia

It’s therefore highly recommended to avoid arguing with a person who lacks insight as constant confrontation and denial may invariably lead to avoidance.

The principles of LEAP can be an effective tool to gain the trust of someone who lacks insight. LEAP stands for Listen, Empathize, Agree, and Partner. The crux of this approach is reflective listening: to have your point of view considered seriously, the other person needs to feel that you have seriously considered theirs. A related principle is called the ‘three As’: Apologize for a difference in opinion, Acknowledge the existence of different perspectives, and Agree to disagree.

https://psychiatryonline.org/doi/10.1176/appi.ajp-rj.2016.110306

Negative symptoms refer to lessening or absence of normal behaviours related to motivation and interest or verbal and emotional expression commonly seen in schizophrenia. These can occur early in the disease, persist over time, increase in severity and remain between severe episodes.

Correll CU, Schooler NR. Negative Symptoms in Schizophrenia: A Review and Clinical Guide for Recognition, Assessment, and Treatment. Neuropsychiatr Dis Treat. 2020 Feb 21;16:519-534.

Correll, C. The Prevalence of Negative Symptoms in Schizophrenia and Their Impact on Patient Functioning and Course of Illness. The Journal of Clinical Psychiatry. 74(2):e04, 2013.

Although it’s not always easy to recognise these symptoms yourself, tell your doctor or healthcare team about any negative symptoms you may have noticed and together you can improve them with approaches that are right for you.

General interventions focused on a healthy lifestyle that may help include exercise, improved sleep, improved diet, smoking cessation, appropriate alcohol intake and social participation. Social skills training, cognitive remediation therapy and cognitive behavioral therapy (CBT) also have a positive impact.

Other conditions that can contribute to negative symptoms need be treated. And, adjustments or a switch in medication may be necessary to help treat negative symptoms or improve other symptoms and side effects that can make them worse.

Generally, it’s important to look after yourself, to socialize and to get out and about as much as possible.

Correll CU, Schooler NR. Negative Symptoms in Schizophrenia: A Review and Clinical Guide for Recognition, Assessment, and Treatment. Neuropsychiatr Dis Treat. 2020 Feb 21;16:519-534.

You should never stop taking antipsychotic medication without discussing it with your doctor or healthcare team. But there are a number of reasons why your doctor may decide to switch to a different antipsychotic medication:

• Some of your symptoms haven’t improved, despite taking your antipsychotic medication continuously as prescribed.
• Your antipsychotic medication has unacceptable side effects that haven’t gotten better over time.
• You have a relapse of severe positive symptoms, such as delusions or hallucinations, despite taking your antipsychotic medication continuously as prescribed.

Different antipsychotic medications have different effects (and different side effects). What happens depends on the reason for switching, which antipsychotic medication you’re switching from, and which antipsychotic medication you’re switching to.

If you’re stable and switching to improve positive symptoms, such as delusions or hallucinations, or negative symptoms, such as apathy, difficulties talking, or withdrawing from social situations and relationships, your doctor will switch your antipsychotic medication to a different one that can control those symptoms better. If you’re stable and switching because of side effects, your doctor will follow guidelines and switch your antipsychotic medication to a different antipsychotic medication that is less likely to produce those side effects.

In both these cases, the switch needs to be done slowly over a period of weeks or more with a crossover period, where the dose of the antipsychotic medication you’re switching from is gradually reduced to avoid any rebound effects, while the dose of the antipsychotic medication you’re switching to, is gradually increased. (You also may need to take other medications temporarily during this period.)

If you’re switching because you have a relapse of severe positive symptoms despite taking your antipsychotic medication continuously, your doctor may switch your antipsychotic medication more quickly.

Whatever the scenario, it’s important to carefully follow the directions given for switching to avoid side effects or a worsening of your condition, and your doctor or healthcare team will monitor your progress.

Fagiolini A. Roundtable discussion. Advances in schizophrenia, Rome 2021.

People with schizophrenia often have negative symptoms such as social withdrawal (isolating yourself) and apathy that are more pronounced than positive symptoms like hallucinations and delusions, and can be confused with symptoms of depression. Also, people with chronic schizophrenia often present not only with negative symptoms but also with depression. (About 25 percent of people diagnosed with schizophrenia meet the criteria for depression.) Both schizophrenia and depression are specifically linked to anticipatory anhedonia (a reduced anticipation of future pleasure).

Jarratt-Barnham I, et al. The influence of negative and affective symptoms on anhedonia self-report in schizophrenia. Comprehensive Psychiatry 2020; 98:152-165.

Treen D, et al. Influence of secondary sources in the brief negative symptom scale. Schizophr Res 2019; 204:452.

Siris SG. Depression in schizophrenia: perspective in the era of “atypical” antipsychotic agents. American Journal of Psychiatry 2000; 157: 1379-1389.

Barch DM, et al. Mechanisms underlying motivational deficits in psychopathology: similarities and differences in depression and schizophrenia. Curr Top Behav Neurosci 2016; 27: 411-449.

Research suggests that a low mood, pessimism and suicidality (serious thoughts about taking one’s own life, suicide plans and suicide attempts) were more typical of depression. Whereas, alogia (the tendency to speak very little), blunted affect (difficulty in expressing emotions) and social withdrawal (isolating yourself) were more typical of the negative symptoms of schizophrenia.

Krynicki CR, et al. Acta Psychiatr Scand 2018 137(5): 380-390.

More simply, people with depression will feel depressed and experience guilt as well as a sense of worthlessness while people with negative symptoms of schizophrenia are more indifferent and may lack these concerns.

Correll CU. The meaning of patient functioning in the evaluation and treatment of patients with schizophrenia. Advances in schizophrenia, Rome 2021.

An exact cause of schizophrenia has not been found. However, genetics is thought to account for up to 80 percent of the risk of developing the disease. Identical twins have a 48 percent chance of both developing schizophrenia if one twin has the disease, fraternal twins have a 17 percent chance, children of parents with schizophrenia have a 13 percent chance, and siblings have a 9 percent chance of developing the disease.

McGue M, Gottesman II. The genetic epidemiology of schizophrenia and the design of linkage studies. European Archives of Psychiatry and Clinical Neuroscience. 1991;240(3):174-81.

Many genes have been identified that may contribute to the risk of developing schizophrenia, however these are all shown to have a small to moderate risk of disease progression alone.

Umeda-Yano S, Hashimoto R, Yamamori H, Weickert CS, Yasuda Y, Ohi K, Takeda M. Expression analysis of the genes identified in GWAS of the postmortem brain tissues from patients with schizophrenia. Neuroscience Letters. 2014;568:12-6.

Additionally, specific genetic differences have been strongly associated with schizophrenia. These may contribute to problems during brain development and later mental functioning. Yet, they only account for a small number of schizophrenia cases.

Rapoport JL, Giedd JN, Gogtay N. Neurodevelopmental model of schizophrenia: update 2012. Molecular Psychiatry. 2012;17(12):1228-38.

McGue M, Gottesman II. The genetic epidemiology of schizophrenia and the design of linkage studies. European Archives of Psychiatry and Clinical Neuroscience. 1991;240(3):174-81.

Mental illness or medication can sometimes affect how people drive. Some drivers may need to take extra care or may become too unwell to drive.

You must tell the relevant authorities if you have schizophrenia and they will decide if you can keep your license. Regulations may vary from place to place but you may need to have a medical examination, a driving test, or your doctor may need to confirm whether you’re fit to drive.

Your insurance cover could also be affected if you drive and haven’t told the authorities about your condition or if your doctor tells you not to drive.

The main reasons for weight gain in people with schizophrenia are sedentary lifestyle, unhealthy food habits, genetic make-up and antipsychotic treatment. It has been estimated that almost one-half of people with schizophrenia were obese. Even from the first episode of schizophrenia, about one-quarter of people with schizophrenia, both medicated and unmedicated, were found to be obese.

Dayabandara M, Hanwella R, Ratnatunga S, Seneviratne S, Suraweera C, de Silva VA. Antipsychotic-associated weight gain: management strategies and impact on treatment adherence. Neuropsychiatr Dis Treat. 2017 Aug 22;13:2231-2241.

Although some antipsychotic medications are more commonly associated with weight gain than others, many of them can cause significant weight gain.

There is rapid weight gain in the first few weeks after commencing antipsychotic medications. The rate of weight gain then gradually decreases and flattens over several months. The mechanisms behind weight gain associated with antipsychotic medication are not fully known but they can alter appetite control and energy metabolism in a number of different ways.

Amore M, Aguglia A. Riv Psichiatr 2019; 54 (Suppl 6): S7-S10.

Dayabandara M, Hanwella R, Ratnatunga S, Seneviratne S, Suraweera C, de Silva VA. Antipsychotic-associated weight gain: management strategies and impact on treatment adherence. Neuropsychiatr Dis Treat. 2017 Aug 22;13:2231-2241.

Weight gain and obesity lead to reduced quality of life, stopping antipsychotic medication inappropriately, increased cardiovascular problems and even death, so it’s an important concern.

Ways to prevent and treat weight gain include switching to another antipsychotic medication that has a lower risk of weight gain, lifestyle modification and exercise programs or taking weight-loss medication. Dietary counselling, and cognitive and behavioral approaches are also effective. These are all options you can discuss with your doctor or healthcare team. And, remember that you should never stop taking antipsychotic medication without discussing it with your doctor or healthcare team.

Dayabandara M, Hanwella R, Ratnatunga S, Seneviratne S, Suraweera C, de Silva VA. Antipsychotic-associated weight gain: management strategies and impact on treatment adherence. Neuropsychiatr Dis Treat. 2017 Aug 22;13:2231-2241.

Feelings of apathy, lack of energy and not wanting to do things because of decreased motivation are associated with negative symptoms, which are often a core feature of schizophrenia. Anxiety and agitation are also common in schizophrenia. And, these may give rise to feelings of unease and restlessness. (You can also just have an inner sense of restlessness without actually moving around more.)

https://www.ahdbonline.com/articles/2007-the-spectrum-of-agitation-associated-with-schizophrenia-and-bipolar-disorder

Cognitive Behavioral Therapy (CBT) has shown positive results in treating apathy and negative symptoms.

https://www.nami.org/About-NAMI/NAMI-News/2013/Treating-Apathy-in-Schizophrenia

People taking antipsychotic medications often describe lethargy, difficulty thinking, dampened emotions and reduced motivation with a variety of physical effects.

Thompson J et al. Experiences of taking neuroleptic medication and impacts on symptoms, sense of self and agency: a systematic review and thematic synthesis of qualitative data. Soc Psychiatry Psychiatr Epidemiol 2020; 55: 151-164. https://doi.org/10.1007/s00127-019-01819-2.

Restlessness is also relatively common among people taking antipsychotic medications. Possible causes include agitation, anxiety, and a movement disorder called akathisia that can make it difficult to sit still.

Bratti IM, Kane JM, Marder SR. Chronic Restlessness With Antipsychotics 2007; 164 (11): 1648-1654. https://doi.org/10.1176/appi.ajp.2007.07071150

If you’re experiencing these or other potential side effects with antipsychotic medication, it’s important to discuss them with your doctor or healthcare team and decide what to do together.