Essential strategies for schizophrenia caregivers

Schizophrenia is a serious mental illness. It affects the way a person thinks, feels emotions, and acts. People with the condition often receive their diagnosis between 16 and 30 years old, though it can be diagnosed at any age.

Since it causes delusions and hallucinations, altering the perception of reality, schizophrenia can severely disrupt day-to-day living. As a result, it needs to be managed all throughout a person’s life.

Many people with schizophrenia have loved ones who contribute to their care. It can be challenging, even for those who understand the illness.

“The behavior of [someone with] schizophrenia often pushes people away,” says John Preston, PsyD, a neuropsychologist and professor emeritus of Alliant International University in Sacramento, California. “And when they have a psychotic episode, they can do things that are embarrassing or bizarre. Lots of times, family members get burned out,” he explains.

Being a steady, conscientious caregiver for someone who has schizophrenia takes patience and determination, but it's critical for your loved one’s continued health and well-being. With that in mind, here are some key tips to remember.

Be persistent about diagnosis and treatment

Schizophrenia is a complex illness. Treatment typically requires medication, and the exact regimen must be customized for the person. A healthcare provider (HCP) may try a few different drugs—or a combination of drugs—until they arrive at the right mix. This could take weeks, or even months, but it’s important to stick with it through this period. Once symptoms begin to subside, people with schizophrenia often see a vast improvement in their ability to function.

Be proactive about their health and medical care

Schizophrenia isn’t a temporary state of mind. It’s a mental health disorder that requires lifelong treatment.

“You need family members with a clear understanding that this is an illness,” says Preston. “It’s a necessity to take your medications.” Missing medications may lead to a relapse of symptoms.

It’s also key to make sure the person with schizophrenia attends all healthcare appointments, whether it’s with a primary care provider, a mental health professional, or another HCP. An HCP can monitor their progress, look for potential problems, and keep an eye on their overall health.

Keep loved ones on a consistent routine

Staying on schedule can minimize stress and make daily life more predictable. Make sure medication is taken at the same time every day. Carve out regular times for eating healthy meals, exercising, and getting adequate sleep, as well.

Watch for side effects

Schizophrenia is often treated with medications called antipsychotics (also known as neuroleptics). These medications can cause side effects, including a disorder called tardive dyskinesia, which causes involuntary movements. These movements can include repetitive, jerky motions in the face and limbs, including grimacing, blinking, sticking out the tongue, tapping feet, waving fingers, rapid movements of arms or legs, and movements in the trunk or neck.

Find support from schools and employers

If the person with schizophrenia is in school, talk with appropriate officials about making accommodations. If they have a job, encourage them to discuss accommodations at work.

Join a support group

Living with someone who has schizophrenia can be difficult and exhausting. Try joining NAMI’s Family-to-Family program, which helps family members meet other caregivers and develop coping skills.

Watch for burnout

Burnout occurs when a person becomes physically and mentally exhausted by caregiving, It can occur even with a support system in place, so it’s important to be aware of the signs. These include irritability, hopelessness, withdrawing from interests and loved ones, loss of focus, and changes in sleep, eating habits, or weight.

Burnout takes a toll on your health and can affect the person you care for. If you notice symptoms or start feeling overwhelmed, ask for help. Reach out to a trusted healthcare provider, who can give advice and recommend strategies to feel better.