Schizophrenia: how to be a collaborative caregiver

Schizophrenia is a type of psychotic disorder, a serious mental illness that interferes with the way a person interprets reality. People with schizophrenia may experience distressing hallucinations and delusions. They may experience disorganized patterns in thought, speech, and behavior. They may experience social withdrawal and find it difficult to form relationships, attend school, maintain employment, and remain independent.

As a result, many people with schizophrenia require help from a caregiver or a care-partner—a loved one who assists them day to day. Caregivers often play an important role in helping a person with schizophrenia adhere to their treatment plan.

Approaching caregiving as a collaboration

Ideally, treating schizophrenia should be a collaborative experience between the person with schizophrenia, their caregiver, and their healthcare providers. A person with schizophrenia should always have a voice in their treatment decisions. However, being an active participant in healthcare can be challenging for someone with schizophrenia. Some ways you can help your loved one take an active role in treatment:

• Ask what they need help with.
• Encourage them to learn more about schizophrenia.
• Reinforce the idea that their opinions and concerns are important when it comes to decisions about their treatment.
• Encourage them to prepare for their appointments, such as writing down questions or topics they would like to discuss and keeping a journal of their day-to-day experiences.
• Lead by example, following consistent habits with exercise, healthy eating, sleep schedule, and avoiding smoking, alcohol, and recreational drugs.
• Encourage them to seek social support—for example, participating in group therapy or support groups where they can connect with other people who are living with a serious mental illness.

It’s also important to spend time together doing things that are not associated with treatment. Everyone needs a break every now and again.

Dealing with reluctance

Treatment for schizophrenia is at least a little different for everyone. But one thing all treatment plans have in common—they require consistency. For example, stopping medication or taking medication inconsistently can lead to a relapse of symptoms. If a loved one stops following treatment, it’s important to encourage them to resume treatment. Some strategies that can help:

• Decide on the best approach. You know your loved one better than anyone. Will they respond to a private conversation between the two of you? Is this something to discuss with their healthcare providers present?
• Destress ahead of time. If you are anticipating a difficult appointment or a difficult conversation with your loved one, schedule some time for yourself. Destress. Collect your thoughts. Think about what you want to get out of the conversation.
• Take your loved one’s concerns seriously. Try to keep in mind what they are going through and give them space to express their thoughts and feelings about treatment.

Caregiving can evolve over time

Schizophrenia is a lifelong condition and a loved one may need different types of caregiving at different times. People may require different levels of support at different times—and finding that balance can take some trial and error. It’s important to check in from time to time—with your loved one, with their healthcare providers, with yourself—to try and understand what your loved one needs right now.

You don’t need to have it all figured out ahead of time. Focus on doing the best you can at this moment and try to recognize what you might need to do differently going forward.