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Speaking up about symptoms is important.

A healthcare provider can help to identify PD-related hallucinations and delusions, monitor signs that symptoms may be progressing, and offer ways to help manage any related challenges you may face. Even still, many find it difficult to have that conversation.

80%-90% of people will not mention their hallucinations and/or delusions to their healthcare provider.

Reasons to talk to your healthcare provider about Parkinson’s disease hallucinations and delusions:

time-duration
They may get worse over time

Hallucinations and delusions can continue to worsen as the disease progresses.

affect life at home
They can affect life at home

Hallucinations and delusions can lead to increased distress, greater responsibility for caregivers, and even nursing home placement.

 

Uncovering symptoms

People often don’t tell their doctors about their PD-related hallucinations and delusions, which can be a challenge when trying to diagnose the condition.

80%-90% of people will not voluntarily mention their hallucinations and/or delusions to their healthcare provider. Proactively discussing the link between PD and the possibility of psychosis can help you and your healthcare provider identify and treat symptoms.

 

Even if you’re not experiencing hallucinations and delusions, it’s never too early to have a conversation with your healthcare provider about them. At your next appointment, be sure to ask about non-motor symptoms.

What are some risk factors?

There’s no way to accurately predict which patients will develop PD-related hallucinations or delusions, but there are a number of risk factors:

Duration and severity of Parkinson's
Duration and severity of Parkinson's
Medications that increase dopamine levels
Medications that increase dopamine levels
Getting older
Getting older

Start the conversation with these questions

It can be difficult to know what’s important to share with your healthcare provider, whether you’re living with PD-related hallucinations or delusions, or caring for someone who is. Sometimes even remembering what you want to discuss can be challenging. Answering these questions is a great place to start. Bring them to your next visit.

TOPICS

WHAT YOU SEE, HEAR, SENSE, EXPERIENCE, OR BELIEVE

QUESTIONS
  1. Have you seen, heard, or sensed things, such as people, animals, or objects that were not actually there (hallucinations)? If so, how frequently?

  2. Have you had any beliefs or fears about your loved ones stealing from you, putting you in harm’s way, or being unfaithful? (Perhaps a spouse, caregiver, or friend?)

  3. Are you able to recognize that the experiences you shared (above) are not real?

HOW YOU’RE AFFECTED

  1. How upset are you about these hallucinations or delusions?

  2. How upset or concerned is your family about these hallucinations or delusions? For those who don’t know about them, how upset do you think they would be?

  3. What concerns about experiencing hallucinations or delusions do you have?

  4. What questions do you have about the impact of hallucinations and delusions on your daily activities?

  5. Have you shared any of these experiences with loved ones or a healthcare provider?

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