Living With Parkinson’s Disease-Related Hallucinations and Delusions

Ralph and his wife, Brenda, were settling into their evening routine when Ralph looked toward the fireplace and asked her quietly, “Do you see that little dog over there?” Brenda followed his gaze…and saw nothing. That moment of quiet confusion was her first real glimpse into a lesser-known aspect of Parkinson's disease: hallucinations and delusions.^1-3

Parkinson’s disease is a progressive nervous system disorder that affects about one million people in the U.S.^4-6 Common symptoms of Parkinson’s disease include tremors and rigidity, but the condition can also involve non-motor symptoms.⁷ Around half of all people living with Parkinson's may experience hallucinations and/or delusions over the course of their disease, a condition known as Parkinson’s disease psychosis (PDP).^1,2 These challenging and often under-reported symptoms can reshape how a person sees, interprets and interacts with the world.^2,3,8,9 

A hallucination is seeing, hearing, or experiencing something that isn't there, while a delusion is holding a false belief despite evidence to the contrary.² These symptoms tend to worsen over time and can look different for each person.^2,10 

For people living with Parkinson’s disease-related hallucinations and delusions, it can be difficult to talk about their experiences with loved ones or their healthcare providers. Up to 90% of patients don't proactively tell their doctors about these symptoms, often due to embarrassment or fear.^3,8,9 The stigma surrounding hallucinations and delusions can create additional barriers to open discussions, and care partners may also be hesitant to speak up out of concern for their loved ones.^3,8,11,12 

For Ralph and Brenda, openly talking with each other and his doctor about what he was experiencing was the first step in finding a way to access therapy to help manage these symptoms.

Ralph’s Story

Before his diagnosis, Ralph was living what he calls “the good life” – running his own dental practice, joking with patients, and raising three daughters with Brenda. In his early 50s, small changes crept in, including a subtle tremor in his left hand, shuffling feet, and a faraway look that his loved ones noticed before he did. A neurologist confirmed what his primary doctor had suspected: Parkinson's disease. With initial treatment for his motor symptoms, Ralph continued working for several more years.

But Parkinson's had more in store. Ralph began seeing things that weren’t there: a small dog by the fireplace, distant relatives sleeping across the living room floor, strangers occupying the chair next to him. At first, he chalked it up to his medications and said nothing – not to Brenda; not to his doctor. “I was supposed to be her knight in shining armor,” he later explained, “and now I needed her help for not just my body, but my mind.”

The hallucinations that started out seemingly harmless turned frightening. A menacing wolf appeared in their home – massive, threatening, always watching. One February night, Ralph awoke to it snarling in front of him. Driven by a desperate need to protect Brenda, he left the house without waking her and walked into the freezing dark. He was found more than a half-mile away at a cousin's house, with cuts and a head injury. The episode made one thing undeniable. Parkinson's-related hallucinations weren't just distressing; they could be dangerous.^9,13,14

Brenda's experience that night was its own kind of terror. She awoke to an empty chair, bolted outside barefoot in near-zero-degree temperatures, and searched the neighborhood calling Ralph's name. “I've learned not to be shy about communicating with his doctors,” she said afterward. “I'd rather ask questions and understand something than cause myself more stress.” From that point on, she brought notes to every neurology appointment and made sure Ralph's full experience – hallucinations included – was part of every conversation.

Talking to the Doctor

After their harrowing experience, Ralph and Brenda spoke to his doctor and described everything that happened: the wolf, the wandering, the fear to talk about his experience. His neurologist explained these symptoms were consistent with Parkinson's disease-related hallucinations and delusions, a recognized part of how the disease can progress, and that they warranted treatment.^2,10 He prescribed NUPLAZID® (Pimavanserin), the first and only FDA-approved treatment for Parkinson’s-related hallucinations and delusions^.15,16 After weighing the benefits and risks together with his care team, Ralph and Brenda decided to add it to his treatment plan.

It is important for providers to know that NUPLAZID has a Boxed WARNING. Elderly patients with dementia-related psychosis treated with antipsychotic drugs are at an increased risk of death. NUPLAZID is not approved for the treatment of patients with dementia who experience psychosis unless their hallucinations and delusions are related to Parkinson’s disease.¹⁵ See additional Important Safety Information below. Please read the full Prescribing Information , including Boxed WARNING.

Over time, Ralph noticed changes. The wolf disappeared. The frequency of his other hallucinations decreased. He still occasionally sees figures that aren't there, but they're no longer threatening, and they tend to fade as soon as he’s in their line of sight. Ralph still sees his neurologist every six months, who, along with Brenda, helps him manage his symptoms and continue living life on his own terms.  

Moving Forward Together

Today, Ralph and Brenda focus on what they have: five grandchildren, a weekly breakfast group, a faith community that rallies around them, and a version of daily life they've built together. Parkinson's will always be part of Ralph’s life, but being open about it has helped him build a great support network.

Ralph's advice to others living with Parkinson's: don't wait to speak up. He kept his hallucinations to himself for months, and he now understands speaking with his wife and healthcare team might have helped him sooner.

Brenda's advice to care partners is equally direct. Trust what you observe, take notes, and show up to appointments whenever you can. Ask your loved one’s doctor early on how to recognize the signs of hallucinations and delusions so you can act quickly before symptoms become more severe.