Still have questions?
Read through Frequently Asked Questions for information on what to do if your loved one starts experiencing Parkinson's-related hallucinations and delusions.
Care partner support starts here
Resources and guidance for those taking care of a loved one with Parkinson’s-related hallucinations and delusions
Caring for someone with Parkinson’s disease is a constant balance between understanding all aspects of the disease and adjusting how you respond to evolving symptoms and behaviors. As a care partner, ensuring that your loved one feels safe and supported while also tracking and observing changes in their behavior can feel exhausting. But being prepared with the right resources and support can allow you and your loved one to embrace Parkinson’s together.
See Parkinson's from a care partner perspective
“I don’t say when [my husband] was diagnosed, I say when we were diagnosed.”
– Connie, care partner, advocate
Hallucinations and/or delusions can be a part of Parkinson’s disease
Physical motor symptoms (like tremors, slowness of movement, rigidity, postural instability, etc) tend to be more noticeable. Non-motor symptoms, like Parkinson's-related hallucinations and/or delusions, may affect ~50% of people over the course of the disease. Learn more about the signs and symptoms.
Take a simple 4-question screener
If you suspect your loved one with Parkinson's is experiencing hallucinations or delusions, ask them to take this screener and share it with their doctor.
Be watchful for possible symptoms
Even if your loved one isn’t experiencing hallucinations or delusions now, watch for early signs and don’t be afraid to start the conversation. They may feel embarrassed or afraid to speak up. By talking with your doctor and developing a care plan early, your family can better understand their roles, stay informed about symptoms, and feel more prepared if hallucinations or delusions happen.
Refer to this Early Action Guide for Parkinson’s-related hallucinations or delusions for tips and tools on what to do if you start to notice symptoms.
Subtle symptoms are symptoms too
It’s easy to brush off symptoms of hallucinations and delusions of your loved one, or even attribute them to old age, but not speaking up about what you’re noticing may delay care that they need. Changes like needing more support, emotional distress, or isolation may seem subtle at first, but can become more noticeable if symptoms progress. Understanding the level of risk today can help tomorrow.
If you’re able to attend your loved one’s appointment, don’t be afraid to be honest with their doctor about any changes you’ve noticed. Download this guide to help the conversation.
What to do when your loved one is experiencing hallucinations and delusions
Present a calm front, pay attention, and observe. Remember that these symptoms can be a part of Parkinson’s disease, not your loved one “losing their mind.” If you have an Early Action Guide, now is the time to track behavioral changes between doctor’s appointments. Be prepared to start the conversation and ask about a treatment option that could help.
Respond according to their level of insight.
If your loved one still has insight, try and explain that what they're experiencing is not real. However, if your loved one has lost insight, do not argue or try to convince them what they're experiencing is not real. This may only make someone more agitated and upset.
Offer reassurance.
During an episode, stay close and make sure your loved one knows they are safe.
Acknowledge and redirect:
You can’t make symptoms go away. If your loved one has lost insight, it can help to acknowledge how they are feeling in the moment and then redirect your loved one’s attention.
For example: Even if your loved one thinks they are hearing children in the next room, pretend to ask the (non-existent) children to leave so your loved one feels validated and safe. Then move toward a distraction.
Talk openly.
Avoid keeping things to yourself in an effort to avoid escalation or pretend “everything is okay.” The best support includes speaking up to a healthcare provider, even if it’s on your loved one’s behalf.
Time to speak up
While starting a conversation with your loved one can be difficult, don’t let that get in the way of what’s most important—reassuring they are safe and validated. Get tips for talking about symptoms with your loved one.
Hallucinations and delusions affect the whole family. Keep yours educated with the Parkinson’s Family Conversation Guide.
Being a care partner is tough. But so are you
The care partner burden is real. It’s heavy. There is a lot to manage. And you’re only human. Anger, frustration, and isolation are all too common.
Remember to take care of yourself, too. With the right resources and support, you don’t have to do it alone.
Guidance for care partners
Hear from the advocates
Listen as Ryan Reynolds and a group of advocates share they're experiences about navigating Parkinson’s disease.
Ready to learn about a treatment option?
You've taken an important step by learning about Parkinson's-related hallucinations and delusions. Now plan your next move by exploring a possible treatment option. Remember, only your doctor can determine if a treatment option is right for you.