Most people living with Parkinson’s disease eventually develop some symptoms of Parkinson’s disease psychosis (PDP), including hallucinations and delusions. If you or a loved one has Parkinson’s, understanding PDP, learning about treatment options for psychotic symptoms, and knowing how psychosis may affect life expectancy can help you feel better prepared.

In this article, you’ll learn everything you need to know about Parkinson’s disease psychosis and how you can help a loved one who may be experiencing PDP.

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What Is Parkinson’s Disease Psychosis?

Parkinson’s disease psychosis refers to delusions, hallucinations, and illusions that people living with Parkinson’s may experience. Here’s a breakdown of each of those symptoms:

• Delusions — Having beliefs that aren’t true
• Hallucinations — Seeing things that aren’t really there
• Illusions — Misinterpreting something real as something else

When people experience these symptoms, they may seem confused, like they aren’t living in the real world.

Between 20 percent and 40 percent of people with Parkinson’s report symptoms of psychosis sometime during the course of the disease.

Symptoms may start out very mild, but they can still greatly affect your quality of life from the beginning. Over time, these may become more severe, which may cause problems for both the person living with Parkinson’s and their caregivers. Because these symptoms can get worse, you should talk to a healthcare provider about any delusions, illusions, or hallucinations experienced by you or your loved one. That way, they can help you find treatment before symptoms progress.

How Common Is Parkinson’s Disease Psychosis?

Between 20 percent and 40 percent of people with Parkinson’s report symptoms of psychosis sometime during the course of the disease. The numbers can be confusing, though, because some studies include delirium in these numbers, even though this is more often caused by medications that a person is taking or an infection. Ultimately, based on the research that’s currently available, it’s difficult to tell how many people actually experience PDP.

How Is Parkinson’s Disease Psychosis Diagnosed?

Diagnosing Parkinson’s psychosis can be complex. A healthcare provider like a neurologist who is trained in managing Parkinson’s should be involved in diagnosis. To properly diagnose PDP, a healthcare provider will rule out other diseases and disorders that can cause psychosis, such as dementia with Lewy bodies, Alzheimer’s disease, schizophrenia, delirium, and major depression with psychosis.

In order to meet the diagnosis criteria for PDP, you have to experience psychosis symptoms either continually or every now and then for at least one month. Additionally, you have to experience Parkinson’s symptoms before psychosis symptoms appear.

The cause of Parkinson’s psychosis isn’t very clear. PDP can be a side effect of Parkinson’s medications, such as dopaminergic medications or dopamine agonists, or it can emerge as part of brain changes that occur as Parkinson’s progresses.

The first step in treating PDP usually involves discontinuing or lowering the dosage of certain medications used to treat Parkinson’s.

Other PDP risk factors include:

• Older age
• Dementia
• Depression
• Sleep disorders
• Vision problems

What Are the Treatment Options for Parkinson’s Psychosis?

Psychosis in Parkinson’s is a serious medical concern. A properly trained healthcare provider, such as a neurologist or psychiatrist — or both, working as a team — should be in charge of treatment options.

The First Step: Modifying Parkinson’s Medications

The first step in treating PDP usually involves discontinuing or lowering the dosage of certain medications used to treat Parkinson’s.

“When I first started taking a new drug four times daily, the night hallucinations were dreadful,” one MyParkinsonsTeam member shared. “When I told my neurologist about these, she dropped the medication to three per day, and I have to take my last one no later than 5 p.m., otherwise I will hallucinate.”

Often, when people with Parkinson’s stop taking certain medications, they experience an increase in other symptoms the drugs had been managing. In these cases, a doctor may adjust the other Parkinson’s drugs to target the other motor and nonmotor symptoms.

The Next Step: Adding Antipsychotic Medication

If PDP symptoms continue despite treatment changes, your care team may want to monitor mild symptoms for a while. It’s important to keep all follow-up appointments to be sure symptoms of psychosis aren’t worsening.

For people whose hallucinations and delusions become serious, a healthcare provider may prescribe medications. There’s no single best antipsychotic for use in Parkinson’s disease. These are the main antipsychotic drugs used to treat Parkinson’s psychosis:

• Pimavanserin (Nuplazid), a selective serotonin inverse agonist, is the first drug approved by the U.S. Food and Drug Administration (FDA) for treating Parkinson’s psychosis. Unlike other antipsychotics, this medication doesn’t cause motor symptoms.
• Quetiapine (Seroquel) is an FDA-approved antipsychotic drug for schizophrenia that some doctors prescribe off-label (outside its approved use) to manage PDP. However, some research has found it to be ineffective.
• Clozapine, which requires frequent blood testing to monitor for serious side effects, is sometimes used if quetiapine isn’t effective or well tolerated.

A MyParkinsonsTeam member reported, “Nuplazid is helpful for hallucinations and delusions. It’s expensive, but most insurance covers it with prior approval from the neurologist. My dad started it almost one month ago, and he isn’t hallucinating as much in the morning.”

Another member shared, “I’m taking Seroquel for my hallucinations — no problems anymore.”

Does Parkinson’s Psychosis Impact Life Expectancy?

Parkinson’s psychosis not only affects quality of life but also has been found to lower life expectancy. People with Parkinson’s psychosis have a 34 percent higher risk of death than those who haven’t developed psychotic symptoms.

If your loved one experiences these symptoms, they may respond better if you don’t argue or try to reason with them. What they’re experiencing is real to them, and they may get upset if you try to tell them it’s not.

Some antipsychotic drugs have also been associated with increased mortality (higher death rate). Antipsychotic use is associated with higher rates of comorbidities (coinciding health conditions) such as cardiovascular disease, which affects the heart and blood vessels. However, recent research indicates that treating Parkinson’s psychosis with pimavanserin is linked with lower mortality rates compared with other antipsychotic medications.

If you or a loved one is experiencing Parkinson’s psychosis, it’s important to discuss these symptoms with a healthcare provider as soon as possible. You can work together to create the best Parkinson’s psychosis treatment plan.

How Can You Help a Loved One With PDP?

The best thing you can do for a family member diagnosed with PDP is to get them medical care. If they can find the right medication or set of medications that can balance the chemicals in the brain, your loved one will likely experience fewer delusions, illusions, or hallucinations.

If you’re waiting for medication to work or your loved one still experiences these symptoms, they may respond better if you don’t argue with them or try to reason with them. What they’re experiencing is real to them, and they may get upset if you try to tell them it’s not. Stay calm, and reassure them that they’re safe and well.

It may help to acknowledge what they’re experiencing, too. If they’re sure there’s a problem, you might be able to offer to fix it for them, and they might be comfortable leaving it in your hands. If they’re seeing something that isn’t there, you might acknowledge it and offer to get rid of it. This can seem counterintuitive, but it may help reassure your loved one that you love them and are on their side.

Join the Conversation

On MyParkinsonsTeam, people share their experiences with Parkinson’s disease, get advice, and find support from others who understand.

How have you managed Parkinson’s psychosis? Let others know in the comments below.