How To Talk To Someone With Hallucinations Or Delusions
- It is usually not helpful to argue with someone who is experiencing a hallucination or delusion. Avoid trying to reason. Keep calm and be reassuring.
- You can say you do not see what your loved one is seeing, but some people find it more calming to acknowledge what the person is seeing to reduce stress. For example, if the person sees a cat in the room, it may be best to say, “I will take the cat out” rather than argue that there is no cat.
Page reviewed by Dr. Chauncey Spears, Movement Disorders Fellow at the University of Florida, a Parkinsons Foundation Center of Excellence.
What Are Parkinsons Hallucinations
Symptoms of psychosis occur in up to 50% of people with Parkinsons disease.
Parkinsons disease psychosis is considered a neuropsychiatric condition. This means it involves neurology and psychiatry . While the psychosis involves mental health symptoms, they are caused by Parkinsons disease, which is a disease of the nervous system.
Psychosis in Parkinsons disease comes in two forms:
- Hallucinations: Sensory experiences that are not really happening
- Delusions: False beliefs not based on reality
These symptoms can be debilitating and scary for the people experiencing them. They can interfere with a persons ability to care for themselves and to relate to other people.
Psychotic symptoms in Parkinsons disease are associated with increased caregiver distress, risk of hospitalization and nursing home placement, and healthcare costs.
A study suggests the presence of hallucinations and delusions in people with Parkinsons disease is a predictor of mortality .
How Can You Improve Aggressiveness And Hallucinations In Parkinsons
Hallucinations may spark anger or aggression in a person with Parkinsons disease. Some ways to help include:
- Reassure them, tell them they are safe.
- Speak slowly and calmly.
- Ask questions about the persons feelings.
- Listen to the person, dont interrupt.
- Avoid sudden movements.
- Give the person space and a way out, so they dont feel cornered or threatened.
- Make an emergency plan ahead of time for what you and others in the house will do if the person experiencing hallucinations becomes a danger to themselves, you, or anyone else.
- When it is safe, help the person speak with their healthcare provider about making a plan to address the hallucinations.
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Lifestyle Changes Can Help
Beyond treatment with medications, other changes to your lifestyle may be helpful in managing psychosis symptoms in PD, says Dr. Pan. For example, increasing time spent with friends and engaging with others both help brain health in general, and may help reduce cognitive complications and psychosis in Parkinsons patients, says Dr. Pan. Also, a regular routine is important, such as keeping a regular sleep schedule, which can help with preventing psychosis and cognitive health, in general. Exercise is also protective in slowing the progression of Parkinsons, she adds.
How Commonly Do Parkinsons Disease Patients Develop Psychosis
Psychosis in Parkinsons disease generally comes in two forms: hallucinations or delusions . When hallucinations occur, they are mostly visual . Sometimes, they can be threatening, but this is less common. Auditory hallucinations are rare in Parkinsons disease and if they do occur, they are usually accompanied by visual hallucinations.
Delusions are usually of a common theme, typically of spousal infidelity. Other themes are often paranoid in nature Because they are paranoid in nature, they can be more threatening and more immediate action is often necessary, compared to visual hallucinations . It is not uncommon that patients actually call 9-1-1 or the police to report a burglary or a plot to hurt them.
Unfortunately, psychosis occurs in up to 40% of Parkinsons disease patients . In the early stage of Parkinsons disease psychosis, the patient often still has a clear understanding and retains their insight, but this tends to worsen over time and insight may eventually be lost. At later stages, patients may be confused and have impaired reality testing that is, they are unable to distinguish personal, subjective experiences from the reality of the external world. Psychosis in Parkinsons disease patients frequently occurs initially in the evening, then later on spills into the rest of the day.
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Practical Tips For Caregivers Of People With Parkinson’s Psychosis
This 2-page tip sheet has bullet point suggestions for what to do if the person you care for experiences hallucination, delusions or confusion, or becomes agitated or aggressive. In addition, there are tips for how to best be prepared for a doctors appointment when you bring this behavior to the attention of your medical team.
Additional Drugs May Be Helpful
In addition to reducing your PD dosages, or removing certain meds from your treatment, there may also be additional drugs to try. If we reach a point where weve optimized medications and cant reduce any further because otherwise we would have more motor dysfunction, there are other medications we can add on to specifically address psychosis, explains Dr. Pan. There are three main options, she says, including Nuplazid , which the FDA approved for psychosis in PD in 2016, plus antipsychotics Clozaril and Seroquel . Your doctor can determine whats best for you.
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How Are They Treated
Your medical team should be aware of non-motor issues, just like your physical symptoms. Internists, neurologists, and psychiatrists together can help determine the right course for each person.
There are antipsychotic medications that are safe and can help to reduce the symptoms of Parkinson’s disease psychosis, but there are even more antipsychotics that are contraindicated for PD.
Let a medical provider know you have Parkinson’s when seeking emergency care or treatment for something by doctors who are not a part of your regular medical team.
There is only one drug, pimavanserin, approved in 2016 by the FDA specifically for PD. It has a mechanism of action that doesn’t block dopamine. This has made it a safer drug for people with Parkinson’s.2
Two other medications, quetiapine and clozapine, that have been used for a longer time, are also considered safe for treating hallucinations and delusions in people with PD.2
How To Care For Someone Who Experiences Hallucinations
If the person you care for experiences a hallucination, there are a few things youll want to do in the moment and others youll want to do when the moment passes.
The most important thing to remember is to never try and talk the person with Parkinsons out of their hallucination. They are actively experiencing it and by trying to talk them out of it, they may either feel like they arent being heard or that their experience is being diminished.
What matters in the moment is their safety and your reassurance that theyre going to be okay. You might calmly say, I understand that youre seeing X. Im not having that experience, and I just want you to know that everything is going to be okay, theres nothing dangerous happening here and youre safe.
Other strategies Dr. Joanne Hamilton, PhD, ABPP-CN of Advanced Neurobehavioral Health of Southern California, shared with us are to:
Here are a few actions you can take once the hallucination has passed:
How To Care For Someone Who Experiences Delusions
If the person youre caring for experiences confusion or delusions, heres what you can do in the moment:
- Stay as calm and patient as you can and remember that this belief has nothing to do with you and only with what is going on in their mind
- Remove any objects in the room that could pose a danger to them or to anyone else
- Clear space so there are no tripping hazards and its easy for the person to move around
- Do not try to reason with the person or convince them why their belief is false
- Reassure them 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 to them so they dont feel threatened
- If you feel like you or they are in danger, call 911
Here are a few actions you can take once the delusion has passed:
- Inform their doctor immediately
- Educate others who may care for the person how to handle the situation if it happens
- If the person is open to it, discuss it with them and ask them to explain what the experience is like for them and if theres anything different you could do next time
- Seek expert advice if you feel like you need support in managing these episodes
I Had A Hallucination: What Next
Research has shown that for many people with PD who have them, hallucinations begin after a change in medication, more specifically, an increase in levodopa . Additional factors make a person more likely to experience hallucinations when medications are changed, such as other cognitive problems or memory issues, depression and sleep problems. Dementia|A term used to describe a group of brain disorders that cause a broad complex of symptoms such as disorientation, confusion, memory loss, impaired judgment and alterations in mood and personality.] also increases the risk of hallucinations and delusions when PD medications are changed. Dementia means cognitive changes whether in memory, judgment or attention that interfere with daily life.
One thing that does not affect the risk of hallucinations is your regular dose of levodopa. Rather, studies show that it is a change in dose an increase in a dose that has been stable that sets off hallucinations.
Tip: Experiencing a hallucination does not mean you are going crazy. Many people recognize that their hallucinations are not real. Do not react to these visions or sounds or engage them dismiss them. Bring up the topic with your doctor immediately.
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What Causes Psychosis In Parkinsons
Currently, there is not a clear understanding of the exact cause of Parkinsons disease psychosis, although certain brain chemicals and receptors are believed to play a role. In general, the condition is believed to be caused by either one of the following:
Side effect of dopamine therapy:
Although an exact causal relationship has not been established, some believe that this condition may be a side effect of dopaminergic therapy .2Dopaminergic therapy increases dopamine levels, helping improve motor symptoms in patients with Parkinsons disease. However, increasing dopamine levels can also cause chemical and physical changes in the brain that inadvertently lead to symptoms such as hallucinations or delusions.
Natural outcome of the disease:
This condition can be triggered by changes in the brain that occur regardless of taking dopamine enhancing medication. Some of these changes occur naturally as Parkinsons disease progresses.2
Examples Of Delusions In Pd
- Belief: Your partner is being unfaithful.
- Behavior: Paranoia, agitation, suspiciousness, aggression.
What Is A Hallucination
A hallucination is a perception of something that does not actually exist. This may be visualised, heard, felt, smelled or tasted. Hallucinations are sometimes confused with illusions, which are distortions of a reality rather than something that is purely imagined – as with hallucinations.
Visual hallucinations: In Parkinson’s, hallucinations are most commonly visual and may be in black and white, in colour, still or moving. Often the images involve small animals and children. They may disappear quickly or may last for some time.
Auditory hallucinations: auditory hallucinations are less common. These generally involve hearing voices or other familiar sounds. Auditory hallucinations can also be part of a depressive symptomatology.
Tactile hallucinations: hallucinations may be tactile, that is, you may feel a sensation, like something touching you.
Smell and taste hallucinations: less commonly you may feel that you can taste something you havent eaten, or you may smell something that is not present, such as food cooking or smoke.
Usually hallucinations are not threatening or distressing. If you hallucinate you may be unaware that your perceptions are not real, and sometimes imagined images or sensations can be comforting. But hallucinations can also be distressing and you may feel threatened or frightened and may need reassurance and comfort from those around you.
About Parkinsons Disease Psychosis
This page includes a fact sheet and a video that can help you better understand PDP, a non-motor aspect of Parkinsons disease . Hallucinations and delusions are non-motor symptoms. PDP is a common aspect of PD, with around 50 percent of people with PD experiencing hallucinations or delusions over the course of their disease.
Hallucinations and delusions can take many forms, and cause patients with PDP to see or hear things that others do not. The non-motor symptoms of PD may come with additional challenges. Increased caregiver distress and burden, nursing home placement, and increased morbidity and mortality have all been associated with these non-motor symptoms. Its important to talk to a PD specialist if you or a loved one you are caring for is living with PDP.
Michael and Renee
Michael began to experience hallucinations and delusions seven years after he was diagnosed with Parkinsons disease . In this video, Michaels wife, Renee, shares their experiences and explains why reporting aspects of PD to a healthcare provider is important.
We want people to understand that this is part of Parkinsons, and theres something you can do about it. Renee C.
Renee C., Michaels wife passed away in late 2017. Michaels family continues to help support and care for him and his Parkinsons disease psychosis.
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Families Often See The Signs First
Often, loved ones or close family members may notice the signs of psychosis in Parkinsons disease first. Diagnosis is based on history, often with patients families reporting that symptoms are occurring, says Dr. Hui. To confirm the diagnosis, your doctor will consider a variety of diagnostic criteria, such as which specific symptoms are present and when they began, as well as ruling out other potential causes, according to a study in Parkinsons Disease.
Parkinson’s Disease Psychosis: The What When Why And How
Psychosis is a psychiatric term used in neurology to refer to a spectrum of abnormalities. Parkinsons disease psychosis is where people experience hallucinations or delusions. Hallucinations is seeing, hearing, or smelling things that dont exist. With tactile hallucinations, one can feel a presence that isnt there. Delusions are believing something that is not true, like that a spouse is being unfaithful or caregivers are stealing. In this one-hour talk, movement disorder specialist Christopher Goetz, MD, focuses on hallucinations and spends a little time on delusions.
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Speak Up Start A Conversation
Whether you’re a caregiver or a person living with Parkinson’s, getting help starts with having a conversation about hallucinations and delusions related to Parkinson’s. Although it can be difficult, talking to a Parkinsons specialistand each otherabout what you’re experiencing is an important first step.
Who Is At Risk For Psychosis
Theres no predicting with certainty which patients with Parkinsons disease will go on to develop symptoms like hallucinations or delusions. A number of risk factors both internal and external- are associated with the condition.Some of these risk factors include: age, duration and severity of Parkinsons disease and the taking of dopamine therapy.3-6
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The Cause Of Parkinsons Delusions And Hallucinations
Some risk factors associated with the development of psychosis in Parkinsons disease include:
- Age: Parkinsons disease usually occurs in people over age 60.
- Duration and severity of Parkinsons disease: Psychosis is more common in advanced or late-stage Parkinsons disease.
- Later onset: Occurring later in life
- Hyposmia: A decreased sense of smell
- Cognitive impairment: Problems with thinking, including trouble remembering, difficulty learning new things, difficulty concentrating, problems making decisions that affect everyday life
- Depression: People who have both depression and Parkinsons disease are at a greater risk of developing psychosis.
- Diurnal somnolence: Daytime sleepiness
- REM sleep behavior disorder: A sleep disorder in which you physically act out dreams involves making vocal sounds and sudden, often extreme, arm and leg movements during REM sleep
- Visual disorders: Impaired vision
- Severe axial impairment: Speech, swallowing, balance, freezing of gait
- Autonomic dysfunction: Impairment of the autonomic nervous system , which controls involuntary or unconscious actions such as heart rate, breathing, body temperature, blood pressure, digestion, and sexual function
- High medical comorbidity: The existence of more than one condition or illness in the same person at the same time with Parkinsons disease, may include conditions such as dementia, depression, and sleep disorders
Parkinsons Disease Psychosis : An Important Nonmotor Manifestation Of Parkinsons Disease
Burden and Clinical Manifestations
- PDP is an important complication of Parkinsons disease that accompanies progressive motor and nonmotor symptoms 1
- This nonmotor complication of Parkinsons disease affects an estimated 30% to 60% of the roughly 1 million patients in the United States with Parkinsons disease1-3
- Manifestations of PDP may include hallucinations, including hallucinations of a nonvisual character that may be auditory, tactile, gustatory, or visceral in nature3-5
- PDP is also characterized by delusions, which is a form of disordered thinking that involves firmly held beliefs not based in reality3-5
- The features of PDP are based in the neurochemistry of Parkinsons disease6
Figure 1: Progression of Parkinsons Disease and the Development of Parkinsons Disease Psychosis1
Pathophysiology of PDP
Figure 2: The 5HT2A Receptor
Treatment of PDP
Table 1: Receptor Blockade Profile of Atypical Antipsychotics Versus Pimavanserin15-17
D2 = dopamine type 2 H1 = histamine 1 receptor alpha = adrenergic-alpha receptor M = muscarinic receptor.
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