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 treatment options for psychotic symptoms and how psychosis may affect life expectancy can help you feel better prepared.

Treating PDP involves making changes to existing Parkinson’s medications and adding antipsychotic medication if psychosis symptoms continue. First, you’ll need to obtain a confirmed diagnosis of Parkinson’s psychosis from a neurologist experienced in treating movement disorders.

Diagnosing Parkinson’s Disease Psychosis

Diagnosing Parkinson’s psychosis can be complex, and a healthcare provider trained in managing Parkinson’s should be involved in diagnosis and treatment. 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.

To properly diagnose psychosis in Parkinson’s, a healthcare provider will rule out other diseases and disorders that can also cause psychosis.

After confirming that the psychosis isn’t caused by another disease or disorder, the healthcare provider will also ensure the following:

• The person with Parkinson’s is indeed experiencing hallucinations or delusions.
• Parkinson’s symptoms began before any of the psychosis symptoms started.
• The psychosis symptoms have been occurring either continually or every now and then for at least one month.

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 emerge as part of brain changes that occur as Parkinson’s progresses.

Other PDP risk factors include:

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

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 in treating psychosis in Parkinson’s disease involves discontinuing or lowering the dosage of certain medications.

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 neurology or psychiatry 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. 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, but some research has found it to be ineffective.
• Clozapine (Clozaril, Versacloz), 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.”

People with Parkinson’s psychosis have a 34 percent higher risk of death than those who haven’t developed psychotic symptoms.

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

Life Expectancy With Parkinson’s Disease Psychosis

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.

Some antipsychotic drugs have also been associated with increased mortality (higher death rate). Antipsychotic use is linked to 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, particularly during the first 180 days of use.

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 treatment plan.

Talk With Others Who Understand

On MyParkinsonsTeam, the social network for people with Parkinson’s disease and their loved ones, more than 106,000 members come together to ask questions, give advice, and share their stories with others who understand life with Parkinson’s disease.

Are you or a loved one experiencing symptoms of Parkinson’s psychosis? Have you found any treatment options that help? Ask a question or share your thoughts in the comments below, or start a conversation by posting on your Activities page.