Hallucinations in Parkinson's mean seeing, hearing, feeling, or smelling things that aren't real, which can be common symptoms of Parkinson’s. SASPAP is a short, validated screener that helps you identify these symptoms so you can talk about them with your healthcare provider.[1]
Take the SASPAP screener for a chance to win $300 or an Apple Watch to use with StrivePD. Entry takes about a minute.
A hallucination is when your brain perceives something that isn't actually there. In Parkinson's, they are most often visual, but any sense can be involved:[5][6]
Some people know at the moment that what they're experiencing isn't real. Others find it harder to tell.
Doctors group these together as Parkinson's-associated psychosis. The SASPAP covers four types:[1][4]
Illusions and sense of presence are sometimes called minor hallucinations. They may not be a problem on their own, but they often progress to more serious hallucinations, so they are worth recognizing.[1][7]
More common than most people realize. Psychosis eventually affects around 50% of people with Parkinson's.[1][2] If you're experiencing this, you are far from alone.
These symptoms often aren't volunteered during clinic visits because of embarrassment or lack of insight.[1][3] People worry about being judged, or about what it might mean. Care partners sometimes hold back too. A short, structured screener makes the first step easier, because you don't have to find the words yourself.
SASPAP stands for the Self-Administered Screening Questionnaire for Parkinson's Disease-Associated Psychosis. It was developed by a committee that included neurologists, a psychiatrist, a person living with Parkinson's, and a patient advocate, and was published in the journal Movement Disorders.[1] StrivePD offers it under license from the International Parkinson and Movement Disorder Society (MDS).
In a study of 250 people with Parkinson's, the SASPAP had a sensitivity of 87.8% and a specificity of 92.3% compared with expert assessment.[1] What does this mean? It was good at catching people who had symptoms and good at not flagging those who didn't. The researchers concluded it can be self-completed at the start of a visit.[1]
If your screen is negative: Your responses suggest you are likely not experiencing Parkinson's-associated hallucinations or delusions right now. That's reassuring, but Parkinson's changes over time. Keep monitoring your symptoms, tell your healthcare provider about any changes, and plan to repeat the screener in 3 to 6 months. StrivePD will remind you.
If your screen is positive: Your responses suggest symptoms that may be consistent with Parkinson's-associated hallucinations and/or delusions. Here's what to keep in mind:
If you ever feel unsafe, or worry you might harm yourself or someone else, seek urgent medical help.
What does SASPAP stand for?
Self-Administered Screening Questionnaire for Parkinson's Disease-Associated Psychosis.[1]
How many questions are in the SASPAP?
Four, one for each of illusions, sense of presence, hallucinations, and delusions.[1]
Is the SASPAP a diagnosis?
No. It's a screening tool that helps identify symptoms to discuss with your healthcare provider.
What should I do if my result is positive?
Share the results with your care team, keep taking your medications as prescribed, and contact your provider promptly if symptoms are sudden or worsening.
What if my result is negative?
Keep monitoring your symptoms and report any changes. Retake the screener in 3 to 6 months.
Does having hallucinations mean my Parkinson's is progressing?
Not necessarily. Medications, sleep problems, infections, and other factors can contribute. Your provider can help sort out the cause.
Can a care partner complete it?
Yes, in the research, patients and caregivers both completed the questionnaire, and comparing their separate responses showed substantial agreement.[1][8] An individual’s care taker who knows one’s symptoms can absolutely complete the form on the behalf of their loved one.
This article is for educational purposes only and isn't medical advice. Talk with your healthcare provider about any symptoms or medication questions.
The SASPAP is © 2023 International Parkinson and Movement Disorder Society, used under license.
