While Parkinson’s is often thought of in terms of motor symptoms, it can also be characterized by non-motor symptoms, including hallucinations and delusions.
A hallucination means you are experiencing something that others are not—for example seeing, hearing, smelling, tasting or feeling something that isn’t there.
A delusion is a false thought, worry or belief that you believe to be true and feels very real, but isn’t.
Experiencing hallucinations and/or delusions as a result of Parkinson’s is referred to as Parkinson’s Disease Psychosis (PDP).
At any stage
Approximately 50% of people living with Parkinson’s will experience some form of hallucinations or delusions during their Parkinson’s journey. Hallucinations and delusions can happen at any stage of Parkinson’s but usually happen in later stages. When they happen earlier in Parkinson’s, it is usually related to starting certain medication classes or taking higher doses of these medications. However, they can also occur at any stage of Parkinson’s due to changes in the brain.
It can be hard to talk about these symptoms and people can feel shame or embarrassment when they occur. You are not alone. The first step towards addressing PDP is understanding and accepting that it is a common problem for people living with Parkinson’s and is considered a non-motor symptom, just like constipation, mood or sleep changes.
If you have new or worsening hallucinations or delusions, report them to your care team as soon as you can. They can keep track of these symptoms over time and advise how to manage them. The earlier you can address PDP with your care team, the better you can manage it and improve your quality of life.
Involving your care team
The most important thing when it comes to PDP is to let your care providers and partners know as soon as you notice changes in your vision, hearing, thinking, and/or behaviour. The earlier you can address PDP with your care team, the better you can manage it and improve your quality of life.
Once you bring up your concerns to your care provider, they will typically do a clinical evaluation, review your medications and dosage, assess your lifestyle, and determine your symptoms’ severity. This will help your care provider determine if your symptoms are caused by changes in the brain associated with Parkinson’s or something else.
For example, if they are a side effect of medication or if they are triggered by an acute medical condition called delirium. Delirium is a sudden change in thinking or new confusion that is caused by a change in your health. For some, delirium may be caused by a big medical event like a recent surgery or infection, but it can also be caused by smaller changes like dehydration or severe constipation. If visual hallucinations only happen at night, it’s important to distinguish these from very vivid dreams, which are also common in Parkinson’s.
Treatment options
If the hallucinations and delusions are not caused by another medical condition or a new medication, your care provider might look at reducing other medications, including some of your Parkinson’s medications. Don’t change any medications without talking to your care provider first. Parkinson’s medications aren’t safe to stop suddenly. This takes careful weaning and monitoring to change or stop Parkinson’s medications.
If the hallucinations and delusions continue to get worse and are distressing to you, you may need another medication to help. Some people may interact with the hallucination, for example talking, yelling or even hitting/swinging at the hallucination. This degree of distressing hallucinations or delusions is an urgent reason to reach out to your care team, as an adjustment in your medication and/or another medication may be needed to help.
Medication review
Your care team will review your Parkinson’s medications and may reduce some of the doses if needed, or they may consider an antipsychotic medication. For some people, if they are also experiencing issues with memory and thinking, starting a dementia medication can be helpful.
Written by Parkinson Canada and Alison Dixon, MD, FRCPC (Geriatrician, NS Health).
View recording at: https://rb.gy/vk8flb
Understanding the difference between
hallucinations vs delirium
Hallucinations are seeing, hearing, smelling, tasting or feeling something that isn’t there. Visual hallucinations (i.e., seeing) are the most common form of hallucination in Parkinson’s. Early on, you may notice a shadowy shape or figure out of the corner of your eye or have the sense that someone is standing behind you. For some people everyday objects can resemble something else, for example a curtain may look like a person or a spot of dirt on the floor may look like an insect. That’s called an illusion or minor hallucination. Others may experience clear, fully formed hallucinations of things that are not there like people or animals. These hallucinations look very real but no one else is able to see them. This may not bother you at all,for example seeing a friendly cat or dog in your kitchen. Other times hallucinations can cause worry and stress, for example seeing a group of strangers in your home.
Delusions are false thoughts, worries or beliefs that are not based on reality or fact. They are not as common in Parkinson’s as hallucinations, but they still occur. Some types of delusional thoughts include: the belief that someone is stealing from you, other people are living in your house, your partner is cheating on you or someone close to you has been replaced by another person. These thoughts and beliefs can be very upsetting to the person experiencing them and for care partners. It’s important for you to share these thoughts and beliefs with your care team.
A connect and redirect strategy often helps for both hallucinations and delusions. Connect with the underlying emotion—were they feeling worried, angry, sad? It’s important to validate the underlying emotional response and then redirect to another topic.
Photos: CanStock
