What is real, and how can you be sure? For someone living with Parkinson’s, it can be difficult to know at times. “In my peripheral vision, I see cats curled up and sleeping all around the house,” shared one member of MyParkinsonsTeam. Another member wrote, “My husband from time to time suffers the delusion that we’re living in a hotel, and he wants to go home. Nothing I say changes his mind.”
While Parkinson’s disease is well known for causing motor symptoms, between 20 percent and 40 percent of individuals with the condition report hallucinations (sensing something that isn’t there) and delusions (persistent, illogical thoughts not based in reality), two symptoms of Parkinson’s disease psychosis.
Identifying hallucinations and delusions can sometimes be challenging for those experiencing them — and for their caregivers and loved ones. Understanding how hallucinations and delusions manifest and how to tell them apart can help people with Parkinson’s disease and their loved ones better recognize them and talk to their doctors about ways they can be managed.
Keep reading for tips on how to identify hallucinations and delusions that may occur with Parkinson’s.
Hallucinations occur when a person sees, hears, feels, smells, or tastes something that doesn’t exist. Hallucinations happen when a person is awake — they are not dreams. People may be aware that they are experiencing a hallucination while it’s happening or realize it shortly after. This is called “retaining insight.”
Losing insight — failing to realize something is a hallucination — can cause agitation and can also lead to falls or other accidents.
The Parkinson’s Foundation describes delusions as “illogical, irrational” and “persistent thoughts not based in reality.” Delusions are less common than hallucinations — about 8 percent of people with Parkinson’s disease experience delusions.
Delusions can be particularly challenging for family members and caregivers because a person with Parkinson’s may falsely believe someone is harming them.
Visual hallucinations are the most common type of hallucination in Parkinson’s psychosis. People can have visions in black and white or in color that last a few seconds or much longer. Visual hallucinations often involve animals or people, such as a child or deceased family member. People often experience hallucinations in their peripheral vision and in low-visibility situations or dark lighting.
Members of MyParkinsonsTeam share examples of their visual hallucinations:
Auditory hallucinations occur when a person hears a sound that isn’t actually there. They happen less frequently than visual hallucinations. People often report hearing indistinct sounds, like music playing in another room.
MyParkinsonsTeam members share examples of auditory hallucinations:
People with Parkinson’s disease can also experience olfactory (smell), tactile (feel), and gustatory (taste) hallucinations. These types of hallucinations are less common than visual and auditory hallucinations.
Smelling cigarette smoke is an olfactory hallucination several members of MyParkinsonsTeam describe:
If hallucinations occur during the early stages of Parkinson’s, they could be a sign of Lewy body dementia (LBD). LDB is a movement disorder that shares features of Parkinson’s. Differentiating between the two conditions can be challenging because of their many similarities.
Parkinson’s disease dementia typically begins at least one year after movement problems develop, whereas LDB coincides closely with movement symptoms.
Delusions often focus around a person’s belief they’re being mistreated. As a result, people experience paranoia, mistrust, anger, and anxiety. Jealousy delusions — usually a belief that a spouse is being unfaithful — are very common. Persecutory delusions — the false belief that someone is cheating or conspiring against you — are also common. Persecutory delusions are often directed at someone the person with Parkinson’s interacts with regularly, like a spouse, family member, or caregiver.
Caregivers on MyParkinsonsTeam share their experiences with jealousy and persecutory delusions:
Some delusions are more general confusions of reality. As one caregiver described, “He mixes reality and old memories and TV programs and fantasy to create a different kind of reality.” Another caregiver shared, “He is POSITIVE we are not where we are, that he has two cats, etc.”
A person experiencing delusions may be anxious, fearful, or very agitated. Caregivers explain how delusions impact their loved ones’ behavior:
Keep in mind that both hallucinations and delusions can be dangerous if you or your loved one acts on them. “I acted out on many of my hallucinations,” one MyParkinsonsTeam member wrote. “One time I fell forwards, flat on my face, in an intersection!”
Delusions can also lead to unsafe behavior. A MyParkinsonsTeam member who cares for a parent wrote, “I have to take things away because she plays with things that can be dangerous. She tries putting things in outlets that don't belong.”
Managing hallucinations and delusions may involve making changes to Parkinson’s medications, addressing underlying health conditions, and making household changes to keep your loved one safe. A neurologist or psychiatrist may recommend discontinuing or updating the dosage of some medications, or adding in a new medication to treat Parkinson’s psychosis. Talking openly with your loved one’s health care provider about these symptoms is the first step in finding effective treatment options.
Learn more about ways to manage hallucinations and delusions.
By joining MyParkinsonsTeam, members gain a community of more than 98,000 people who understand the challenges of living with Parkinson’s disease, including hallucinations and delusions.
Do you have any tips for recognizing hallucinations or delusions? Share your experiences in the comments below or start a conversation in your Activities.