Hallucinations and delusions are symptoms of Parkinson’s disease psychosis. Although motor symptoms like tremors, muscle stiffness, and slowed movements are the hallmark of the condition, between 20 percent and 40 percent of people experience psychosis symptoms, too. Managing hallucinations (sensing something that isn’t there) and delusions (persistent, illogical thoughts not based in reality) can be more challenging than managing motor symptoms.
If your loved one with Parkinson’s is experiencing hallucinations and delusions, there are a number of interventions that can help. Read on to learn more about medication, changes around the home, and other ways caregivers can manage hallucinations and delusions.
Read more about how to recognize the difference between hallucinations and delusions.
Unfortunately, fear, embarrassment, or stigma can cause people to avoid sharing symptoms of Parkinson’s psychosis with their health care providers. It’s important to tell your doctor if you or a loved one experiences hallucinations or delusions, so you can discuss possible solutions.
Your doctor can help determine the cause of hallucinations and delusions. They may be caused by an infection, like an urinary tract infection, or they could be a side effect of a treatment for an unrelated health condition. Hallucinations and delusions can also be an indication of another medical condition, such as dementia with Lewy bodies. Dementia with Lewy bodies is a movement disorder that can be difficult to distinguish from Parkinson’s disease.
Whatever the cause, your doctor can recommend treatments or strategies to help you and your family better deal with episodes of psychosis. One MyParkinsonsTeam member shared tips from their spouse’s doctor: “According to his neurologist, you should always be honest. His neurologist coaches him to listen to me because I am looking out for his best interests, and I will not lie to him about what is real and what is not. He seems content with that.”
Never hesitate to discuss your or your loved one’s psychosis symptoms with your health care team. Drugs used to treat Parkinson’s disease are sometimes the cause of Parkinson’s psychosis. Adding a new Parkinson’s medication or changing the dosage of an existing medication can sometimes lead to hallucinations or delusions. Every medication comes with potential benefits and risks, and reducing or discontinuing drugs may lead to worse motor symptoms. Your loved one’s doctor can help weigh the risks and benefits as you find a treatment plan that works well. This can take a few months, and you may need to be patient.
Read more about treatment options for Parkinson’s psychosis.
It can be hard to know how to respond to a hallucination or delusion while it’s happening. A member described a friend with delusions: “She believed that up to 10 children come and stay in her house, and she is responsible for their care. I didn’t know whether to tell her they are not real or just go along with her.”
The right response will vary, depending on the person and the particular circumstances. In all cases, doing your best to remain calm and patient will go a long way to helping manage the situation. One member explained how their spouse supported them during a disturbing hallucination: “The other day I had one scary one about mosquitos in my room, hundreds of them. My wife came and held my hand and laid down with me.”
If a person is seeing things or hearing voices but has insight, you can explain that the hallucination isn’t real. One member shared this strategy when helping their spouse: “I just talk with him about what he is seeing and then show him that nothing is there. I never try to pretend what he sees is real.”
Another caregiver wrote, “If his hallucinations are during the day, I will tell him he is hallucinating and ask him to show me where or what is the problem. That way he ends up seeing there is nothing there.”
Challenging a person’s reality during a delusion is not recommended. Do your best to stay calm and offer reassuring words. One member of MyParkinsonsTeam shared advice they’d received for caring for their spouse: “I was told not to argue with him or try to convince him that delusions are not real. Just calmly convince him that he is safe and will not come to harm.”
You can also ask questions about what the person is experiencing to help them feel supported.
If the person has lost insight, it may be better not to challenge their reality. Instead, you can offer a distraction, move to another room of the house, or start a new activity.
One caregiver explained, “If it is the middle of the night and he wants to get dressed and go to work, I generally ask him to come and sit with me first so I can go to sleep.”
Sometimes a person experiencing hallucinations or delusions will become angry or aggressive. The following coping strategies can help de-escalate the situation:
Think through an emergency plan in the event that your loved one becomes a danger to themselves or to you and others. Your family member’s neurologist or other health care providers can help you plan ahead.
Making changes around the house can reduce the likelihood of psychotic episodes and help minimize danger when they do occur.
Visual hallucinations frequently occur in low light. Keeping lights on, especially at night, can minimize the chance of visual hallucinations.
Sometimes a person experiencing hallucinations or false beliefs can behave in ways that cause harm to themselves or others. Consider securing firearms, kitchen knives, tools, car keys, and other objects that a person could use in an unsafe way.
Members of MyParkinsonsTeam report situations where a loved one tries to leave the home during a delusion. “My dad has now experienced two episodes (that we know of) where he got up, got dressed, and tried to leave the house. Thank God his difficulty in opening the front door awakened my mother!” one member shared.
Depending on the circumstances, it may be appropriate to control or monitor a person’s ability to exit the home.
Caring for a loved one with Parkinson’s requires a team. If you can, seek help from other family members, friends, or professional carers so the full responsibility isn’t on one person’s shoulders.
Connecting with other caregivers through support groups and on MyParkinsonsTeam can help you find understanding and answers to questions about your loved one’s behavior. Seeking support is an important part of taking care of yourself as you provide care for your loved one.
Read more about self-care tips for Parkinson’s caregivers.
By joining MyParkinsonsTeam, members gain a community of more than 98,000 people living with Parkinson’s disease or caring for someone with Parkinson’s. Members understand the challenges of Parkinson’s, including hallucinations and delusions.
Have you or a loved one experienced Parkinson’s hallucinations or delusions? Do you have any tips for managing hallucinations or delusions? Share your thoughts in the comments below or post on MyParkinsonsTeam.