"Am I Seeing Things?" How to Manage Hallucinations
People with Parkinson’s disease (PD) know that their non-motor symptoms can be more difficult to deal with than their motor issues. About 20 percent of those with PD will at some point experience PD psychosis. Generally associated with psychological conditions like schizophrenia, it is also a common complication in other illnesses, including Parkinson’s.1,2,3
Psychosis tends to develop later in the progression of Parkinson’s. Nearly three-quarters of those who have lived with Parkinson’s for 20 years or more will experience some psychoses. Although there are multiple forms, in PD it generally presents as hallucinations or delusions.
What are the different types?
Hallucinations are deceptions, something that is sensed that is not there. They are associated with your senses, something you see, hear, taste, touch or smell. They occur most commonly in the daytime while awake.3
PD hallucinations are usually visual, seeing someone or something that isn’t there. They appear real to the person experiencing them but aren’t visible to other people.3
There is also what's known as hallucinations with insight. Insight means that the person with Parkinson’s understands that what they are experiencing isn’t real.3
In the early stages of PD psychosis, some people can discuss their hallucinations with their doctor, family, or caregivers. This can help lead to a quick diagnosis and targeted treatment, if appropriate. At a minimum, it can aid everyone in coping with this new disturbance.
As PD psychosis progresses insight may be lost. When this happens caregivers may notice there is increased confusion and agitation, and some people will try to interact with their hallucinatory images.3 The loss of insight can pose dangers to the person with PD and those around them; it requires extra patience and attention from caregivers.
Delusions are persistent false, fixed beliefs that seem real to the person experiencing them. They are not intentional and cannot be controlled.3 Delusions generally fit into 3 main categories. Jealousy, Persecutory, and Somatic.
The most common, paranoia, a component of jealousy, is expressed as suspicion over marital infidelity or the fear of having food or medications poisoned.Delusions are only experienced by about 10 percent of persons with PD. It is important to know what they are and to report any potential examples to the doctor.2
What are the causes?
Parkinson’s, a neurodegenerative disorder of the brain, affects the cells that produce chemicals in the brain that control movement and balance. PD medications boost dopamine levels to ease motor symptoms.3
However, too much dopamine can cause hallucinations and delusions. Other characteristics of disease progression such as cognition and visual-perceptual changes can also bring on these psychological changes.3
Knowing the risk factors
Family members and caregivers should be aware of risk factors, and like with other PD changes, report them to the doctor. Reversible causes like urinary tract infections, sleep disturbances and medication changes can be addressed, and for most the symptoms will abate. Even over-the-counter drugs and supplements can pose risks for people with PD.
Medication adjustments of antiparkinsonian drugs present a delicate balance to control both motor issues and manage psychological symptoms.1,4 The medical team may swap specific drugs or modify dosages to find the best fit for each person. Older people and those with vision problems are also more likely to develop these kinds of psychoses.
Identifying the underlying cause of hallucinations and delusions will help determine what kind of treatment if any, is needed.
Awareness of warning signs can aid in treatment planning. Sometimes hallucinatory symptoms can be managed without being medically treated because they don’t pose any danger. Delusions are more difficult to treat and are associated with a decline in a condition.
There are 3 general steps your medical team will take in evaluating your condition:3
- Assessment – taking a full medical history, evaluating PD stage and determining the impact of psychological symptoms
- Adjustment – reviewing PD medications and making adjustments to try to find the right balance
- Antipsychotics – For many years the use of antipsychotics was subject to its own medical complications due to the interaction with traditional PD medications. In 2016, Pimavanserin was the first drug approved specifically for PD psychosis that doesn’t interfere with motor performance.
Caring for someone experiencing hallucinations or delusions can be frustrating and scary. Getting support for a caregiver is just as important as addressing and managing the condition for someone you love.
Do you find music to be an important factor in your life with PD?