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The Importance of Openly Talking About Hallucinations & Delusions in Parkinson’s

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Psychosis can be a frightening word. Understanding what it means in Parkinson’s disease (PD) and how a person may experience symptoms can ease the fear and stigma surrounding this medical term. Hallucinations and delusions can be common in PD. Openly discussing these symptoms can help your healthcare team discover the best management strategies. Learn the different ways people experience these symptoms and how to address them.

This article is based on Do you see what I see? Hallucinations and Delusions in Parkinson's, a Parkinson’s Foundation Expert Briefing webinar presented by Megan E. Gomez, PhD, Staff Psychologist, Tibor Rubin VA Medical Center.

Shining a Light on Psychosis

If you live with Parkinson’s, some of your most challenging symptoms might be seemingly invisible to others. Known as non-movement symptoms, these can impact mood, sleep, thinking and more. Some are easier to talk about than others.

Not everyone with PD will have hallucinations or delusions, but up to 50% of people with Parkinson's can experience symptoms over the course of the disease. Studies show up to 90% of people do not proactively talk to their doctor about it, meaning the actual number may be higher.

It’s important to know that you are not alone. If you feel, hear or sense things that aren’t there, you may feel self-conscious, embarrassed or even scared to share your experiences. These feelings may lead to isolation and avoidance of care. While it can take courage to talk about your experience, rely on your doctor, neurologist or movement disorders specialist to be familiar with these symptoms.

In Parkinson’s, your doctor might use the term psychosis to describe anything from visual hallucinations caused by slight misperceptions to complex, detailed delusions: seeing things that aren't there or believing things that are not true. These tricks of the brain can seem like minor inconveniences, but often have a big impact on you and your loved ones. These symptoms can stem from Parkinson’s brain changes, medication, dementia or delirium — sudden hallucinations or delusions that can signal a medication or health issue.

Unaddressed, hallucinations and delusions can reduce quality of life for people with Parkinson's and their care partners. These can cause lack of sleep, increase stress and create fall risks or other safety issues. Symptoms can also increase hospitalization risk, care costs and need for long-term care.

Other medical conditions that can cause psychosis include:

  • Bipolar disorder
  • Brain tumor
  • Depression
  • Dementia
  • Lupus
  • Malignant lung neoplasm
  • Multiple sclerosis
  • Schizophrenia
  • Steroid treatment in autoimmune disorders
  • Stroke

Gradual Changes in Perception

Symptoms of Parkinson’s disease psychosis vary in severity. In early PD stages, you may be aware that what you are experiencing is not really there. You might lose that insight as Parkinson’s progresses. This happens slowly and gradually over time.

Psychosis symptoms can include:

  • Illusions or misperceptions: Misperceiving what is there — for example, a coat and hat on a rack might appear to be a person or a shadow may appear to be a mouse.
  • False sense of presence: The sense that someone is looking over your shoulder, in the room or lying next to you in bed, but when you look, no one is there.
  • False sense of something moving past: The awareness of something fleeting past or moving in the periphery, or sense something darting across the floor or someone walking through the hallway.
  • Hallucinations and delusions: Seeing or believing things that are not true, which can cause a range of feelings from undisturbed or anxious to agitated or frightened.

Types of Hallucinations

Some hallucinations recur with frequency, while others happen just once. Hallucinations are more common in people with sleep or cognitive problems or depression. While increasing medications can sometimes put people at risk for the onset of hallucinations, most people with Parkinson's will experience hallucinations after 10 years of diagnosis.

Hallucinations are less likely to occur when someone is engaged in an activity. They are more likely to happen when a person has vision problems, is alone or at night. Understanding how people with Parkinson's might experience these can help reduce the stigma.

Types of hallucinations include:

  • Visual: Seeing people or animals that are living or deceased.
  • Auditory: Hearing things like voices or music.
  • Olfactory: Smelling things that aren’t there, such as chemicals burning or gasoline.
  • Tactile: Feeling as if something is on or underneath the skin, which might cause scratching.

Visual hallucinations can seem as if you are having a vivid dream, despite knowing you are awake — seeing distorted, cartoon-like strangely colored animals and people, bugs, figures hovering on the ground. People have reported seeing fairies or colonies of tiny people. Some people find these entertaining to watch, while others find it frightening.

Common visual hallucinations for people with PD can include:

  • Seeing someone sitting in your home, possibly in your living room or at your dining table. It can range from a friendly presence like a visitor or to the distressing sense of an intruder.
  • Some veterans with PD have reported seeing elaborate, detailed military bootcamps outside, with a drill sergeant and service members.
  • People in cities and urban areas may see out-of-place wildlife, such as deer or skunks.

Auditory hallucinations can cause distraction or poor sleep. People may think neighbors are doing yard work or having a party in the middle of the night. Sounds may seem to come from the attic, basement or walls.

Understanding Delusions

Delusions can distress the person with Parkinson's and their loved ones, sometimes causing isolation, embarrassment, fear, suspicion or jealousy, or resulting in anger or violence toward a care partner. Delusions can create safety or legal problems. Care partners, who may recognize psychosis symptoms before the person with PD, should share these with their loved one’s doctor.

Though delusions are not reality based, they often seem real to the person experiencing them. These often have common themes, including:

  • Persecution: Believing someone is trying to deceive or bring harm. You may suspect a trusted person wants to steal from you or family is plotting against you. Some people suspect their caregiver is trying to poison them and become suspicious of medication or food.
  • Jealousy: Believing a spouse or partner is being unfaithful. Othello syndrome is the false certainty of and preoccupation with a partner’s imagined infidelity.
  • Reference: Feeling like a song or a TV show is speaking directly to you. This may feel like something you want to act on.

Other forms can include:

  • Fregoli delusion: Believing different people are actually a single person changing their appearance or in disguise.
  • Cotard’s syndrome: Thinking you are dead, decaying, do not really exist or your blood or internal organs are missing.
  • Capgras syndrome: Believing an identical imposter has replaced a friend, spouse, family member or pet.

Delirium

Seek medical attention if you experience a sudden change as they are not typical of Parkinson’s. When hallucinations or delusions begin within hours or days, it can be due to changing, stopping, increasing or decreasing a medication, or can signal another medical issue, such as:

  • urinary tract infection or pneumonia
  • dehydration
  • substance withdrawal
  • high or low blood sugar
  • low blood pressure
  • surgery or hospitalization
  • organ failure

Managing the Impact

There are several ways to help a loved one experiencing PD psychosis. Find the best methods that work for you. These techniques can help manage the impact:

  • A stable, calm, familiar environment is essential for someone experiencing psychosis.
  • Keep a routine.
  • Try to keep a well-lit, clutter-free home — this can minimize visual misperception, hallucinations and injuries.
  • Use a nightlight in the bedroom. Unfamiliar environments might worsen symptoms.
  • Offer reassurance that the person with PD is safe, loved and symptoms are not their fault. This can the reduce fear and shame around hallucinations and delusions.
  • During an episode, do not argue or rationalize. Leave the room if necessary.
  • Orient your loved one with calendars, photos or messages on post-its.
  • Remove items that may cause a safety issue, such as area rugs. Explore our home safety page for more.

Focusing on good sleep habits, getting enough exercise and seeking out stress management strategies are vital for people experiencing hallucinations and delusions and those who care for them. Care partners also need adequate rest and breaks from care to burnout risk.

Your doctor can recommend safe management strategies or adjust your medications. Many antipsychotic medications used to treat psychosis should not be used in PD — they can act on dopamine receptors and worsen Parkinson’s symptoms.

While not for everyone, Pimavanserin (Nuplazid®) is a newer antipsychotic that does not block dopamine. It is approved by the U.S. Food and Drug Administration (FDA) specifically for the treatment of Parkinson's disease psychosis. Other medications considered safe options to treat psychosis in PD include Quetiapine (Seroquel®) and Clozapine (Clozaril®). Learn more about medications used to treat psychosis.

Learn More

Explore our resources about hallucinations and delusions in Parkinson’s:

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