Schizophrenia and the Importance of Caregiver Education

Why your loved one’s healthcare team is your best source of information about schizophrenia.

Two women holding hands in support.

Schizophrenia is a serious mental illness that impacts a person’s ability to interpret reality. People with schizophrenia often experience distressing symptoms like hallucinations and delusions.

There is no cure for schizophrenia, but there are medications and other therapeutic strategies that can help people manage the condition. However, even with effective treatment, schizophrenia can be challenging to live with, and people with schizophrenia often rely on the help of a caregiver or care partner.

Being a caregiver

Caring for someone with a serious mental illness is challenging. Caregivers may feel overwhelmed, angry, and frustrated with the demands of the role—and may feel guilty for feeling this way. Episodes of severe psychosis can be frightening. Some caregivers report feelings of embarrassment and shame about their loved one’s diagnosis, and some may have a desire to hide or downplay the diagnosis from others.

It’s important to know that there is no right or wrong way to feel—emotions like these are a normal and expected part of caregiving. It’s also important to know there are steps you can take to better equip yourself for the challenges of being a caregiver.

Learn everything you can

As a caregiver, one of the most important things you can do is learn everything you can about schizophrenia—and more specifically, about your loved one’s diagnosis of schizophrenia. It’s also important to encourage your loved one to learn about their diagnosis as well.

This process is referred to as “patient education” or “caregiver education.” It is an important aspect of care for many health conditions. The aim is to improve a person’s management of their condition by improving their understanding of that condition.

Unfortunately, there are a lot of myths and misconceptions about schizophrenia, many that have been reinforced by decades of pop culture. Fortunately, there are also many great sources of information that are actively working to dispel myths and misconceptions about schizophrenia.

Your best source of information

Your loved one’s healthcare providers will be your best source of information. Some questions and topics you may want to discuss with your loved one’s healthcare providers include:

  • Good sources of patient/caregiver education. Ask if they have any information about schizophrenia that you can take home and where to find reliable information about the condition.
  • Your loved one’s treatment plan. Treatment for schizophrenia typically involves medications called neuroleptics or antipsychotics, as well as counseling/therapy and social support. It may also involve other therapies, such as electroconvulsive therapy. As a caregiver, it’s important to know how the different parts of your loved one’s treatment plan work together.
  • How to encourage independence. Schizophrenia can severely limit a person’s independence. Ask about safe ways to encourage your loved one to do things like finish tasks, set goals for themselves, find interests and hobbies, and stay motivated with treatment.
  • How to recognize a relapse. A relapse is a worsening of symptoms. Stopping medications is a common cause of relapse, but a relapse can occur even when a person is consistently taking their medications. Ask your loved one’s healthcare providers about the signs and symptoms that your loved one may experience during a relapse.
  • How to respond to a relapse. It’s important to have a plan in place if a relapse occurs. Ask your loved one’s healthcare providers how to approach a loved one experiencing an episode of psychosis—for example, how to validate their feelings (while not confirming the delusions) and make them feel comfortable. Ask about the steps to take to get your loved one help during such an episode. It will also be important to discuss this plan with your loved one in advance.

Taking care of yourself

With all the time, effort, and responsibilities that come with being a caregiver, it can be easy to lose track of your own needs. In order to be an effective caregiver, it’s important that you prioritize your own health. This includes physical health, mental health, and emotional health. Schedule time for yourself, connect with other caregivers for mutual support, keep up with your own healthcare appointments, and consider seeing a mental health professional.

Article sources open article sources

National Institute of Mental Health. "Schizophrenia."
Mayo Clinic. "Schizophrenia."
Nanda Sari Nuralita, Vita Camellia, and Bahagia Loebis. "Relationship between Caregiver Burden and Expressed Emotion in Families of Schizophrenic Patients." Open Access Macedonian Journal of Medical Sciences, 2019. Vol. 7, No. 16.
Hilary Wright. "Caregiver and Schizophrenia: How to Handle the Psychosis." Today's Caregiver.
Yi Yin, Weijun Zhang. "Experiences of Stigma and Discrimination among Caregivers of Persons with Schizophrenia in China: A Field Survey." PLOS ONE, 2014. Vol. 9, No. 9.
Cathy MacLean. “Patient education: Sharing a passion, sharing resources.” Canadian Family Physician, 2010. Vol. 56, No. 7.
Tricia Tongco. "Here's What's Wrong With How Media Portrays Schizophrenia." ATTN April 27, 2016.
HelpGuide. "Helping Someone with Schizophrenia."
Larry Alphs, Henry A. Nasrallah, et al. "Factors associated with relapse in schizophrenia despite adherence to long-acting injectable antipsychotic therapy." International Clinical Psychopharmacology, 2016. Vol. 31, No. 4.
Cleveland Clinic. "Caregiver Burnout."

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