When Your Person with Parkinson’s Has Hallucinations

Close up of hand pulling sting to turn on a lamp

Parkinson’s disease psychosis is a non-motor symptom of Parkinson’s that causes people to experience hallucinations and/or delusions. Approximately 50% of all people living with Parkinson’s will experience some form of hallucinations or delusions, and the longer someone lives with Parkinson’s, the greater the likelihood they’ll experience them. Given these statistics, it’s important for care partners to know how to help manage these symptoms. So, what do you do when your person with Parkinson’s has hallucinations? In this post, answer this question, along with others that we commonly hear from care partners about this symptom.  

What Are HALLUCINATIONS?

A hallucination is something someone sees, hears, smells, tastes, or feels that’s not there. Essentially, hallucinations are tricks the brain plays on the senses. Most of the time, these hallucinations are visual. For example, one person told us he often sees tiny people along the floorboards in his kitchen. Another person said he sees people who aren’t there when he walks into a particular room of his house. One physician told us about a person with Parkinson’s who regularly mistook her laundry piles for a person.  

These hallucinations appear clear as day to the person with Parkinson’s but cannot be seen by anyone else. In some cases, the visions may be disturbing and cause emotional distress, but that’s not always the case. They may be friendly and not bothersome at all.  

When people with Parkinson’s first start experiencing hallucinations, they typically experience them with insight. This means the person knows that what they’re seeing isn’t real, and they’re able to recognize it as a symptom of living with Parkinson’s.  

Doctor checking brain testing result, analysis with modern virtual interface in laboratory, innovative technology in science and medicine conceptWhen people lose this insight, however, they begin to believe that hallucinations are real. They may start talking to them, interacting with them, and even try to draw their care partner into the scene with them. When their hallucinations reach this stage, they can go on for a very long time and cause hyper-agitation and aggressiveness, which can be very difficult for the care partner to witness and manage. Whether the hallucinations are distressing or not, interacting with them can pose a potential risk of harm to the person with Parkinson’s and anyone else in the room.   

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?  

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.  

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. What matters in that moment are their safety and your reassurance that they’re going to be okay. You might calmly say, “I understand that you’re seeing X. 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.”   

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

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

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

  • 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 play games with the mind
  • Investigate any environmental triggers that could be causing hallucinations with more frequency or regularity

MY PERSON WITH PARKINSON’S HALLUCINATES FREQUENTLY BUT ISN’T BOTHERED BY IT. IS IT OKAY TO LET IT GO?   

We discussed this topic with Christopher Goetz, MD, professor of neurological sciences and pharmacology at Rush University Medical Center in Chicago. Here’s what he had to say: “There’s a long history of a sort of humorous approach to these hallucinations. Some physicians call them ‘benign hallucinations.’ But they are not benign because Parkinson’s is progressive. I’ve done a study where I treated people with Parkinson’s who had these minor hallucinations with either medication or strategies to keep the hallucinations quiet because I don’t want these hallucinations to progress. The data showed that the people I treated at a low level had a better outcome than those who received no treatment for their hallucinations. We have to acknowledge that Parkinson’s is a progressive condition. Calling something a ‘benign hallucination’ connotes that we don’t have to worry about it. I think we do have to worry about it. And we now have treatments.”  

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. For more advice about communicating about hallucinations with a physician, check out our webinar recording with Dr. Goetz here.    

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?   

Here’s what you can do in the moment:   

  • 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  

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

  • Inform your person’s physician immediately  
  • Educate others who may care for the person 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  

Take Action  

The single most important thing to do when it comes to Parkinson’s disease psychosis is to tell your loved one’s care providers the minute you notice changes in your person’s vision, hearing, thinking, and behavior. The earlier they know what’s going on, the sooner they can begin interventions to help your person feel better.   

Doctor in hospital hallway explaining test results to a coupleOnce you bring your concerns up to your person’s physician, they will typically do a clinical evaluation, review your person’s medications and dosage, assess their lifestyle, and determine their symptoms’ severity. Depending on what they find, they may refer your person with Parkinson’s to counseling or therapy, adjust their medication, change their medication, eliminate a certain medication, or do all of the above. If none of those strategies work, they may try antipsychotic drug therapy to see if they can adjust the brain’s chemical levels. This can bring with it an entirely different set of problems, so it’s crucial to be invested every step along the way and be sure you and your person are well-informed before you move in that direction.  

WANT MORE CARE PARTNER STRATEGIES?

Your role as a care partner will evolve throughout the years, but in each stage, it is essential to equip yourself with tools, advice, strategies, and support to ensure that you and your loved one live well. We designed our new Every Victory Counts® Manual for Care Partners to give you just that. Request your free copy here.

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