“Parkinson’s affects virtually every organ system in the body,” says Hubert Fernandez, MD, the head of movement disorders at the Center for Neurological Restoration at the Cleveland Clinic in Ohio. “The motor symptoms, like tremors, stiffness, or slowness, are just the tip of the iceberg.” One often-overlooked symptom? Parkinson’s disease psychosis (PDP), which may include hallucinations (seeing something that isn’t there) or delusions (false beliefs). If you’re experiencing PDP, help is available. But you’ll need to speak up first. “The last thing patients want is to bother their caregivers,” says Dr. Fernandez. “But [psychosis] is not uncommon, and your clinician can help.” If you or a loved one is experiencing PDP, take heart. Here are five things you should know — including how to treat it.
1. Parkinson’s Disease Psychosis Isn’t Unusual
If you’re experiencing PDP, you aren’t alone. More than half of those with Parkinson’s disease eventually develop psychosis, according to the American Parkinson Disease Association (APDA). Not only is psychosis common, says Fernandez, but in some ways, it’s a normal manifestation of the disease. There are a few reasons why Parkinson’s disease psychosis may occur. According to the APDA, psychosis can occur naturally, as Parkinson’s disease progresses, or as a side effect of dopamine drugs, which are commonly used to treat Parkinson’s. As dopamine levels increase, symptoms like tremors and other motor dysfunction decrease. But as dopamine levels rise, the risk for hallucinations and delusions also increases.
2. Psychosis Symptoms Are Usually Benign
The term “psychosis” may seem frightening at first — especially if you think that psychosis is the same as schizophrenia. (It isn’t.) Most people who have Parkinson’s experience visual hallucinations (as opposed to auditory ones, which are more common in those with schizophrenia) — and even then, these hallucinations are usually harmless and fleeting, says Fernandez. For example, someone with PDP may think they see an animal in their peripheral vision, explains Fernandez. But when they turn their head to investigate, there’s nothing there. As the disease advances, hallucinations may become more specific: Someone may see little children, or loved ones who have passed away, says Fernandez. But, “in general, [these hallucinations are] not threatening.” That said, a small percentage of people who have Parkinson’s-related psychosis experience threatening hallucinations or delusions, like mistakenly believing an intruder is in the house. In that case, it’s important to discuss it with your doctor.
3. You Can — and Should — Talk About Parkinson’s-Related Psychosis With Your Doctor
Even though psychosis is a common occurrence in people who have Parkinson’s, most don’t speak up about it. According to the APDA, only 10 to 20 percent of those who experience PDP tell their doctor about their symptoms. Some people may be embarrassed. Others mistakenly assume that psychosis isn’t a symptom of Parkinson’s. And some people may also have dementia (which often occurs with psychosis), making it difficult for them and others to recognize what’s happening, says Fernandez. But it’s important to seek help sooner rather than later. As your disease progresses, the motor symptoms of Parkinson’s (like tremors and rigidity) may get worse — and in turn, your doctor may recommend an increase in dopamine-boosting medication. But these medications may intensify your hallucinations — to the point where they become truly distressing. If your healthcare team isn’t aware that you’re experiencing psychosis, they won’t be able to take those symptoms into account as they adjust your medication.
4. Parkinson’s Disease Psychosis Can Be Treated
Doctors can treat PDP in several ways, either by adjusting your current medication or by adding a new one to your regimen. If you’re experiencing significant hallucinations, your doctor may consider streamlining your medications — for instance, if you’re taking three to four meds, your doctor might reduce that to two or three, he says. “In theory, it’s easy to get rid of the hallucinations — you get rid of the medication,” he says. “But if you get rid of the meds, [symptoms like] shaking will get worse.” And cutting back on even some of the medication can trigger a return of a motor symptoms. In that case — if the hallucinations are bothersome — your doctor may consider prescribing an antipsychotic medication, he says. (Reminder: You should never adjust your medication on your own — always work with your doctor to determine the ideal dosage.)
5. Sometimes, Treating Parkinson’s Disease Psychosis Isn’t Even Necessary
Not every case of PDP requires active treatment. If hallucinations are very minor, or only happen occasionally, your doctor may tell you to simply ignore them. (Keep in mind that this may be challenging at first, since it’s often difficult to distinguish whether these visions are real or imaginary.) Sometimes that’s all that’s needed. “Only when we are unable to simplify the medication and psychosis is bothersome do we actively treat it,” he says. “Otherwise, we can leave it alone.” Regardless, it’s important to talk to your doctor about any symptoms you’re experiencing so you can work together to identify the best ways to manage them.
