Among potential non motor symptoms that can happen with Parkinson’s disease, hallucinations and delusions are, understandably, some of the most worrisome.
Hallucinations are seeing, feeling or hearing things that aren’t there. Delusions lead a person to firmly believe in scenarios or situations that never happened or are not true.
Not everyone with Parkinson’s disease experiences hallucinations or delusions, which are collectively referred to as psychosis. Like all Parkinson’s symptoms, if, when and to what degree they occur varies from person to person. If they do develop, it’s usually after many years or decades of life with Parkinson’s. Sometimes, but not always, hallucinations and delusions can happen as part of significant memory and thinking changes (dementia). These symptoms can range from not particularly bothersome to scary and disruptive for both the person experiencing them and their care partners and family.
What Are Hallucinations?
The most common hallucinations are visual — seeing things or people that aren’t there. These may be mild and include pleasant images, like children playing in the backyard or a visit from a dear relative who has passed away. But hallucinations could instead be frightening, involving things like an intruder or unknown person in the home.
Sometimes a person realizes hallucinations are not real. Other times, they don’t. Hallucinations come and go — they can happen a few times a month or year or they could happen multiple times per day.
What Are Delusions?
While hallucinations involve hearing, seeing or sensing things that are not there — delusions affect how a person thinks about situations or scenarios. Common delusions include infidelity: a partner or spouse is being unfaithful or having an affair. Another common idea is that loved ones are stealing money from a person or their business. Delusions can, of course, feel hurtful to loved ones and be challenging to work through.
What Causes Hallucinations and Delusions?
There are many possible reasons for hallucinations and delusions. Sometimes, they are brought on temporarily – by a medication change or illness – and resolve once those are addressed. Parkinson’s disease itself can cause these symptoms, but other factors can bring them on or worsen them:
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Certain Parkinson’s medications, particularly dopamine agonists and amantadine, especially in older individuals
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Other non-Parkinson’s or over-the-counter medications, like diphenhydramine (Benadryl)
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Unrelated conditions, like a urinary tract infection, cold, COVID or pneumonia
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Unfamiliar environments, like being in the hospital, and big changes in a day-to-day routine
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Surgery or other procedures
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Sleep disruptions, such as not sleeping well for a few nights in a row
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Stress, anything from losing a job to a loved one passing away
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Vision and hearing loss, which are more common with aging, as these can cause misinterpretation of normal images or sounds
Hallucinations and delusions can happen together but having one doesn’t necessarily mean you’ll have the other. In some cases, a hallucination could bring on or worsen a delusion.
How Are Symptoms Treated?
The most important first step is talking with your loved ones and your care provider. These symptoms can be confusing, concerning or embarrassing so many people, understandably, don’t want to bring them up. But your doctor and family can’t help if they don’t know what’s going on. Remember: If these symptoms happen, they are part of Parkinson’s, not part of you.
If hallucinations and delusions happen, your doctor will review whether you’ve recently started or adjusted medications, if you might have a new illness or infection, and if there are any other changes to your personal or medical status.
Other steps your doctor may take include:
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Guidance for Care Partners
There are many tips and tricks care partners and family members can use in everyday routines to lessen the severity and frequency of these symptoms. These could include keeping a calm and safe-feeling environment at home and redirecting away from a hallucination or delusion instead of arguing about the truth. For more tips, see here.
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Adjust Parkinson's and Other Medications
Your doctor may lower or discontinue certain medications to limit these symptoms. When it comes to Parkinson’s medications, the challenge becomes finding the balance of enough medication to support movement but not increase hallucinations or delusions.
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Add Medication to Lessen Hallucinations or Delusions
When symptoms are significant, bothersome, or posing safety concerns for a person or their loved ones, doctors may prescribe medication to treat them. Nuplazid (pimavanserin) or Clozaril (clozapine) or Seroquel (quetiapine) are among the class of medications that treat these symptoms in Parkinson’s.
Nuplazid is the only medication that is FDA-approved to treat hallucinations and delusions in people with Parkinson’s. This includes people who also may be experiencing significant memory or thinking changes or dementia. This drug works on the brain chemical serotonin to ease symptoms. Because it does not impact other brain chemicals, like dopamine, it does not worsen motor symptoms.
While not FDA-approved for Parkinson’s hallucinations and delusions, Seroquel or Clozaril may be other options. they were used for decades “off label” before Nuplazid came to market. These medications do mildly impact dopamine, so they could slightly worsen motor symptoms.
Like all drugs, these medications also have potential benefits and risks. It’s very important to discuss the pros and cons — of both treating and not treating symptoms — with your personal physician.
Talk to Your Doctor and Family
It’s best to discuss hallucinations and delusions, or the potential for them, early and often, and openly and honestly. Not everyone with Parkinson’s experiences hallucinations and delusions. But learning what they are and sharing this information with your family can lay the foundation for how you’ll navigate them together, should they happen. Every family is different, but many say that using humor, acknowledging emotions (including fear), and being as proactive and positive as possible, help.
When you’re ready, tell your doctor you want to learn more. Ask what the future could hold, what to watch for, how to limit risk, and what to do if you experience hallucinations or delusions.
The medical information contained in this article is for general information purposes only. The Michael J. Fox Foundation for Parkinson's Research has a policy of refraining from advocating, endorsing or promoting any drug therapy, course of treatment, or specific company or institution. It is crucial that care and treatment decisions related to Parkinson's disease and any other medical condition be made in consultation with a physician or other qualified medical professional.
"If the person you're taking care of has symptoms of hallucinations and delusions, I encourage you to see your doctor, talk to them, because keeping it hidden doesn't help the patient at all."
Drew Bourrut
Care partner