Question 1

What are Parkinson’s-related hallucinations and delusions?

Accepted Answer

• A hallucination means seeing, hearing, or experiencing things that aren't real
• A delusion means believing things that aren’t true
Both symptoms affect the brain differently. Hallucinations affect the brain’s sensory processing pathways. Certain types of delusions, including those that occur with hallucinations, can be more common in people with cognitive decline or dementia. Common aspects of cognitive decline include difficulty paying attention or concentrating, multitasking, or problem solving.

Learn more about Parkinson’s-related hallucinations and delusions from our Hallucinations and Delusions Fact Sheet (https://www.moretoparkinsons.com/pdf/pd-related-hallucinations-delusions-fact-sheet.pdf).

Question 2

What are some signs of Parkinson’s-related hallucinations and delusions?

Accepted Answer

• Seeing things that aren’t there. Like people, either living or deceased, animals, or objects
• Hearing things that aren’t real. May include sounds, music, or voices
• Paranoia. Like believing people are talking about you
• False beliefs. May include fears of your loved ones stealing from you, putting you in harm’s way, or being unfaithful

Question 3

Can someone experience both symptoms?

Accepted Answer

Yes, people can experience hallucinations and delusions together. Hallucinations typically occur first, with delusions becoming more frequent as symptoms progress. Delusions can occur without hallucinations, but it could also be a result of another medical issue. Talk to your doctor right away about what you're experiencing to find out.

Question 4

What if symptoms feel comforting vs scary or upsetting?

Accepted Answer

Regardless of how comforting a hallucination can feel, hallucinations or delusions are never normal and can progress. Symptoms may start off subtle. Some people report seeing shadows or a small animal, like a puppy or kitten. But what feels comforting now could become more severe in the future. Tell your doctor at the first sign of any hallucination or delusion.

Question 5

What is the difference between a mild and severe hallucination or delusion?

Accepted Answer

The main difference between mild and severe symptoms is how often symptoms occur and whether patients have lost insight, or the ability to tell what is real and what is not.
• Mild: formed hallucinations, where the person sees a child or small animal, like a cat. It looks real, but the person knows it is not
• Severe: these can be negative, for example, believing a stranger is trying to harm them or there is a conspiracy against them

Question 6

What causes hallucinations and delusions?

Accepted Answer

Currently, there is no clear understanding of the exact cause of Parkinson’s-related hallucinations and delusions. However, these symptoms are thought to be caused by the following:
• A side effect of dopamine therapy. Hallucinations and delusions may be a side effect of certain Parkinson’s medications (called dopaminergic therapies). These medications increase dopamine levels in the brain, helping improve motor symptoms in patients with Parkinson’s. However, increasing dopamine levels may also cause changes that lead to hallucinations and delusions
• The natural progression of Parkinson’s. Hallucinations and delusions may be caused by changes in the brain that occur naturally as Parkinson’s progresses—regardless of whether or not you take any medications to increase your dopamine levels

Question 7

Are hallucinations and delusions common in people with Parkinson’s?

Accepted Answer

Parkinson’s-related hallucinations and/or delusions affect about 50% of people with Parkinson’s over the course of their disease. However, up to 90% do not talk about them with their doctor.

Question 8

When do hallucinations and delusions typically occur?

Accepted Answer

Parkinson’s-related hallucinations and delusions can occur at any stage of Parkinson’s disease.

Question 9

How do hallucinations and delusions affect the person experiencing them? Can a person with Parkinson’s know their hallucinations are not real?

Accepted Answer

• Hallucinations and delusions can cause people to see and hear things others don’t and develop a sense of paranoia and false beliefs
• As symptoms progress, people can begin to lose insight, or the ability to recognize what is real and what is not

Question 10

Do Parkinson’s-related hallucinations and delusions get worse over time?

Accepted Answer

Parkinson’s-related hallucinations and delusions generally get worse over time. Disease progression and medication changes are some of the factors that may contribute to symptoms worsening. Speak up to your doctor because there is a treatment option that can help.

Question 11

How do these symptoms impact family members?

Accepted Answer

Caring for someone who is experiencing Parkinson’s-related hallucinations and delusions can cause emotional distress for family members. Families may need to seek out extra help to keep the house running smoothly. Care partners can also experience feelings of depression, feel isolated, and experience a decline in their emotional and physical health.

Question 12

How do I talk to my loved ones?

Accepted Answer

Opening up about hallucinations and delusions to your family can feel intimidating. Building a care plan is something that can help prepare you and your family for what could come next.
• Develop a care plan discussing strategies for how to handle symptoms at home
• Define roles clearly
• Educate everyone involved
For more information on how to talk with your loved one, download the Family Conversation Guide (https://www.moretoparkinsons.com/pdf/PD-Family-Conversation-Guide.pdf).

Question 13

Are there treatments available for Parkinson’s-related hallucinations and delusions?

Accepted Answer

Yes, there are treatment options available for Parkinson's-related hallucinations and delusions. Learn more about treatment. (https://www.nuplazid.com/)

Question 14

What type of doctor is best equipped to treat these specific symptoms? Which healthcare providers help diagnose and manage Parkinson’s disease?

Accepted Answer

People living with Parkinson’s disease may work with several healthcare providers throughout their care journey. Each provider plays a different role in helping manage symptoms, treatment, and everyday quality of life.
• Your primary care provider (PCP) can help evaluate new hallucinations and/or delusions and determine whether additional testing, treatment, or referral is needed.
• A neurologist is a specialist who focuses on conditions affecting the brain and nervous system. A neurologist can make adjustments to your Parkinson’s medication
• A movement disorder specialist is a neurologist with additional training and expertise in movement disorders like Parkinson’s disease and may help manage more complex symptoms or treatment needs
To help better understand symptoms and discuss treatment options, find a specialist near you (https://www.moretoparkinsons.com/support#find-a-specialist).

Question 15

How are Parkinson’s-related hallucinations and delusions diagnosed?

Accepted Answer

Healthcare providers will look at a list of criteria when considering a diagnosis for Parkinson’s-related hallucinations and delusions:
• Presence of hallucinations, delusions, illusions, or false sense of presence
• Symptoms occurring in someone who already has Parkinson’s disease
• Symptoms lasting at least 1 month
• All other medical conditions can be ruled out

Question 16

How do I monitor the progression of hallucinations and delusions related to Parkinson’s?

Accepted Answer

Ask your doctor about monitoring hallucinations and/or delusions related to Parkinson's. Some examples include monitoring how often symptoms occur by tracking them in a journal or on your phone. Note how vivid or disruptive symptoms become, and whether it becomes harder to recognize what is real. Hallucinations that become more frequent, experiencing loss of insight, or the development of delusions may be signs that symptoms are progressing.

Question 17

How do I talk to my doctor?

Accepted Answer

• The most important thing to remember when talking with your doctor is to be open and honest about what you’re experiencing. You should also share whether your experiences have started affecting your family members to the best of your knowledge
• Start the conversation by sharing your results from this 4-question screener (https://www.moretoparkinsons.com/pdf/PD-Four-Question-Screener.pdf)
• You can also use this Doctor Discussion Guide (https://www.moretoparkinsons.com/pdf/PD-Doctor-Discussion-Guide.pdf) to help ask specific questions about Parkinson’s-related hallucinations and/or delusions

Question 18

When should I/we talk to a doctor about seeing or believing things that are not real? What specific details should I/we track before our doctor’s appointment?

Accepted Answer

• No hallucination is considered normal or healthy. Talk to your doctor right away if you or your loved one are seeing or hearing things that are not real. Symptoms can progress, so it’s important to have a discussion with your doctor as soon as possible
• Take the 4-question screener (https://www.moretoparkinsons.com/pdf/PD-Four-Question-Screener.pdf) and share your results with your doctor at your next visit

Question 19

Does treating Parkinson’s-related hallucinations and delusions affect how motor symptoms are treated? Will my doctor need to adjust my current motor symptom medications?

Accepted Answer

Your doctor will evaluate all of your Parkinson’s medications and symptoms to determine the best treatment approach. The goal is to help manage hallucinations and delusions while maintaining control of your motor symptoms whenever possible.

Question 20

At what point should I/my loved one start treatment for Parkinson’s-related hallucinations and delusions?

Accepted Answer

Make an appointment with your doctor at the first signs of symptoms. Parkinson's-related hallucinations and/or delusions can progress, and in some cases, symptoms may contribute to:
• greater number of falls or fractures
• increase in hospital admissions
• increase in nursing home placements

Question 21

How do I know hallucinations and delusions are related to my Parkinson’s and not something else?

Accepted Answer

Talk with your doctor. Sometimes symptoms can be misidentified. Your doctor is the best person to offer an approach to managing hallucinations and/or delusions.

Frequently Asked Questions

Understanding
the Symptoms

What are Parkinson’s-related hallucinations and delusions?

What are some signs of Parkinson’s-related hallucinations and delusions?

Can someone experience both symptoms?

What if symptoms feel comforting vs scary or upsetting?

What is the difference between a mild and a severe hallucination or delusion?

Causes and Prevalence

What causes hallucinations and delusions?

Are hallucinations and delusions common in people with Parkinson’s?

When do hallucinations and delusions typically occur?

Impact on
Daily Life

How do hallucinations and delusions affect the person experiencing them? Can a person with Parkinson’s know their hallucinations are not real?

Do Parkinson’s-related hallucinations and delusions get worse over time?

How do these symptoms impact family members?

Taking Action,
Diagnosis, and Treatment

How do I talk to my loved ones?

Are there treatments available for Parkinson’s-related hallucinations and delusions?

What type of doctor is best equipped to treat these specific symptoms? Which healthcare providers help diagnose and manage Parkinson’s disease?

How are Parkinson’s-related hallucinations and delusions diagnosed?

How do I monitor the progression of hallucinations and delusions related to Parkinson’s?

How do I talk to my doctor?

When should I/we talk to a doctor about seeing or believing things that are not real? What specific details should I/we track before our doctor's appointment?

Does treating Parkinson’s-related hallucinations and delusions affect how motor symptoms are treated? Will my doctor need to adjust my current motor symptom medications?

At what point should I/my loved one start treatment for Parkinson’s-related hallucinations and delusions?

How do I know hallucinations and delusions are related to my Parkinson’s and not something else?

Ready to learn about a treatment option?

Frequently Asked Questions

Understanding the Symptoms

What are Parkinson’s-related hallucinations and delusions?

What are some signs of Parkinson’s-related hallucinations and delusions?

Can someone experience both symptoms?

What if symptoms feel comforting vs scary or upsetting?

What is the difference between a mild and a severe hallucination or delusion?

Causes and Prevalence

What causes hallucinations and delusions?

Are hallucinations and delusions common in people with Parkinson’s?

When do hallucinations and delusions typically occur?

Impact on Daily Life

How do hallucinations and delusions affect the person experiencing them? Can a person with Parkinson’s know their hallucinations are not real?

Do Parkinson’s-related hallucinations and delusions get worse over time?

How do these symptoms impact family members?

Taking Action, Diagnosis, and Treatment

How do I talk to my loved ones?

Are there treatments available for Parkinson’s-related hallucinations and delusions?

What type of doctor is best equipped to treat these specific symptoms? Which healthcare providers help diagnose and manage Parkinson’s disease?

How are Parkinson’s-related hallucinations and delusions diagnosed?

How do I monitor the progression of hallucinations and delusions related to Parkinson’s?

How do I talk to my doctor?

When should I/we talk to a doctor about seeing or believing things that are not real? What specific details should I/we track before our doctor's appointment?

Does treating Parkinson’s-related hallucinations and delusions affect how motor symptoms are treated? Will my doctor need to adjust my current motor symptom medications?

At what point should I/my loved one start treatment for Parkinson’s-related hallucinations and delusions?

How do I know hallucinations and delusions are related to my Parkinson’s and not something else?

Ready to learn about a treatment option?

Understanding
the Symptoms

Impact on
Daily Life

Taking Action,
Diagnosis, and Treatment