A PA's Guide to Supporting a Loved One With Schizophrenia

For National Patient Advocacy Day, The Educated Patient spoke with Melissa Malinoski, PA-C, a physician assistant at Samaritas, about one of the most demanding forms of advocacy: caring for a loved one living with schizophrenia. Care partners often serve as a first line of defense in noticing when symptoms shift, yet many feel unprepared to interpret what they're seeing or unsure how to bring it up. Malinoski walked through what those early warning signs can look like, how to raise concerns without triggering defensiveness, and how care partners can better understand a loved one's treatment options.

Nearly a quarter of caregivers say they struggle to tell whether their loved one's schizophrenia symptoms are returning or worsening. What are the early signs care partners should watch for, and how can they raise concerns without it feeling confrontational?

Melissa Malinoski, PA-C: Care partners tend to know their loved one well, so they are likely to notice even small changes in behavior before others do. However, understanding what to do when they see changes can be difficult. In fact, a recent Caregiver Action Network (CAN) survey of care partners of people living with schizophrenia found that 24% of care partners say knowing what to do when they think their loved one’s schizophrenia symptoms are returning or getting worse is a challenge they experience in their role.

The good news is that there is no need to memorize a specific checklist of symptoms; rather, what’s important is being able to recognize when a loved one’s behavior begins to change, as this may indicate that they are experiencing a breakthrough or worsening of disease symptoms.

For example, if someone regularly goes out with friends and then begins staying home more often, this can be an early sign that they are experiencing a change in their disease. If they start expressing instances of hallucinations or paranoia, such as suspicion about people around them, or they’re putting less effort into taking care of themselves or seeming less engaged or relaxed, all of these may be signs that something is changing. Any deviation from normal behavior, especially in someone who has been stable, should be viewed as a potential indication that they need additional support.

When care partners notice these changes, it’s important to address them, but these conversations need to be handled sensitively and in a way that is not accusatory or confrontational. For example, rather than telling someone generally that their symptoms are worsening, care partners should try focusing on concrete examples of changes or shifts that they’re seeing. Sharing what they’ve noticed and letting their loved one know that they are there to support is a softer approach to raising concerns and opening up a conversation without putting the person living with schizophrenia on the defensive. If they have permission to do so, care partners can also consider sharing changes or concerns with their loved one’s care team so they can discuss them during the next appointment.

Understanding treatment options was a top challenge for caregivers in this survey. Can you walk through the practical differences between oral and long-acting injectable medications, and how that choice typically gets made?

MM: The CAN survey found that 15% of caregivers struggle with understanding the different treatment options available to their loved one. Given the important role that care partners play in helping their loved one navigate the diagnosis and treatment journey, it’s important that they have a general awareness of the different options that may be appropriate for their loved one.

Antipsychotic medications are a standard part of schizophrenia treatment, and they are available in different formulations, including as daily oral pills and as long-acting injectables [LAIs]. I personally believe one of the most notable practical differences is how often someone has to think about taking their medication. With oral medications, people have to remember to take a pill every day. Even for those of us not living with a serious mental illness, it can be easy to forget to take that daily dose. When you layer on a serious mental illness, taking medication as prescribed can be even more difficult. In addition, taking a pill every day can serve as a constant reminder of their diagnosis.

With an LAI, patients can eliminate at least one pill each day because the medication is given by a health care provider and is designed to last for weeks or even months, depending on the dose. LAIs can also provide reassurance for care partners that the medication was taken as prescribed, reducing some of the worry that often comes with wondering if their loved one took their medication.

Decisions around medication should never be based on one factor, but instead on understanding the full picture of a patient’s needs, experiences and goals. I talk with my patients about what taking a pill every day is actually like for them, specifically whether they have trouble remembering doses, whether it feels burdensome and what they think about an injectable option. For some patients, the convenience of not taking a pill every day is a benefit. For others, an oral medication that is working well for them may be a better fit. It really comes down to the individual patient and what is going to fit best into their life.