Hallucinations

If the person you care for experiences a hallucination, there are a few things you'll want to do in the moment and others you'll want to do when the moment passes.

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The most important thing to remember is to resist the temptation to talk your person out of their hallucination. They are actively experiencing it, and by trying to talk them out of it, they may either feel like they aren't being heard or that their experience is being diminished.

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What matters in that moment are their safety and reassurance that they're going to be okay. You might calmly say, "I understand that you're seeing XXX. I'm not having that experience, and I just want you to know that everything is going to be okay. There's nothing dangerous happening here, and you're safe."

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Other strategies Joanne Hamilton, PhD, ABPP-CN of Advanced Neurobehavioral Health of South California shared are to:

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• Turn on all the lights to make the room as bright as possible, as hallucinations often happen in low light.

• Have the person look closely at what they see to help reset the brain and make the hallucination end.

• If the person does not have insight (meaning they are having a hallucination but are not aware they're having it), give them a lot of reassurance, provide a distraction, move into a different room, or suggest a new activity.

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Here are a few actions you can take once the hallucination has passed:

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• Talk to the person about it (most of the time, even if the person does not have insight, they will remember it when it's over)

• Tell their physician and offer as much detail about the episode you can remember, such as time of day, location, and anything else that may be relevant, like how tired or hungry / full they were.

• Be sure to keep light switches in convenient locations. Since waking up and going to bed are the most prevalent times for people with Parkinson's to hallucinate, turn lights on fast, and make sure they're bright.

• Eliminate or reduce shadows in the house, and be careful of where you place mirrors and reflective surfaces, as they can plan games with the mind.

• Investigate any environmental triggers that could be causing hallucinations with more frequency or regularity.

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If the person you are caring for experiences hallucinations, consider these tips:

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• Tell their doctor

• Stay calm and patient

• Increase lighting at night, which can help reduce shadows and the risk of visual illusions

• Talk to your loved one about his or her experience

• If the person has insight, explain that the experience is not real. If the person lacks insight, do not argue, or challenge the person by saying "they are not real;" instead, agree and/or distract the person.

• Educate others who frequently spend time with your loved one and allow them to help

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My person with Parkinson's hallucinates frequently, but isn't bothered by them. Is it okay to let it go?

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Even if your person isn't bothered by their hallucinations, it's important that you discuss them with a specialist to get personalized advice for how to manage the symptom.

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My person with Parkinson's is having very extreme hallucinations, and I'm scared when they happen. I don't know how to calm them down. What can I do when it's happening?

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Here's what you can do in the moment:

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• Stay as calm and patient as you can

• Remove any objects in the room that could pose a danger to your person with Parkinson's, yourself, or anyone else

• Clear space so there are no tripping hazards, and your person can move around freely

• Reassure your person that everything is going to be okay

• If the person becomes aggressive, minimize your movements, and remain calm

• Ask the person to talk to you about what they are feeling and really listen, so they don't feel threatened

• If you feel like you or they are in danger, call 911

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Here are a few actions you can take once the hallucination has passed:

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• Inform your person's physician immediately

• Educate others who may care for the person for how to handle the situation if it happens when they are with your person

• If your person is open to it, discuss the occurrence with them and ask them to explain what the experience is like for them and if there's anything different you could do next time

• Seek expert advice if you feel like you need support in managing these episodes

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Sources:

The Davis Phinney Foundation. Page 90. I've noticed that my person with Parkinson's seems to be hallucinating, but when I mention it, they deny it. What should I do?  Page 91. My person with Parkinson's hallucinates frequently but isn't bothered by them. Is it okay to let it go? Page 92. My person with Parkinson's is having very extreme hallucinations, and I'm scared when they happen. I don't know how to calm them down. What can I do when it's happening? Every Victory Counts for Care Partners. The Davis Phinney Foundation. "manual." Sixth Edition, 2021.

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