Psychosis can be a frightening word. Understanding what it means in Parkinson’s disease (PD) and how a person may experience symptoms can ease the fear and stigma surrounding this medical term. Hallucinations and delusions can be common in PD. Openly discussing these symptoms can help your healthcare team discover the best management strategies. Learn the different ways people experience these symptoms and how to address them.

This article is based on Do you see what I see? Hallucinations and Delusions in Parkinson's, a Parkinson’s Foundation Expert Briefing webinar presented by Megan E. Gomez, PhD, Staff Psychologist, Tibor Rubin VA Medical Center.

Shining a Light on Psychosis

If you live with Parkinson’s, some of your most challenging symptoms might be seemingly invisible to others. Known as non-movement symptoms, these can impact mood, sleep, thinking and more. Some are easier to talk about than others.

Not everyone with PD will have hallucinations or delusions, but up to 50% of people with Parkinson's can experience symptoms over the course of the disease. Studies show up to 90% of people do not proactively talk to their doctor about it, meaning the actual number may be higher.

It’s important to know that you are not alone. If you feel, hear or sense things that aren’t there, you may feel self-conscious, embarrassed or even scared to share your experiences. These feelings may lead to isolation and avoidance of care. While it can take courage to talk about your experience, rely on your doctor, neurologist or movement disorders specialist to be familiar with these symptoms.

In Parkinson’s, your doctor might use the term psychosis to describe anything from visual hallucinations caused by slight misperceptions to complex, detailed delusions: seeing things that aren't there or believing things that are not true. These tricks of the brain can seem like minor inconveniences, but often have a big impact on you and your loved ones. These symptoms can stem from Parkinson’s brain changes, medication, dementia or delirium — sudden hallucinations or delusions that can signal a medication or health issue.

Unaddressed, hallucinations and delusions can reduce quality of life for people with Parkinson's and their care partners. These can cause lack of sleep, increase stress and create fall risks or other safety issues. Symptoms can also increase hospitalization risk, care costs and need for long-term care.

Other medical conditions that can cause psychosis include:

• Bipolar disorder
• Brain tumor
• Depression
• Dementia
• Lupus
• Malignant lung neoplasm
• Multiple sclerosis
• Schizophrenia
• Steroid treatment in autoimmune disorders
• Stroke

Gradual Changes in Perception

Symptoms of Parkinson’s disease psychosis vary in severity. In early PD stages, you may be aware that what you are experiencing is not really there. You might lose that insight as Parkinson’s progresses. This happens slowly and gradually over time.

Psychosis symptoms can include:

• Illusions or misperceptions: Misperceiving what is there — for example, a coat and hat on a rack might appear to be a person or a shadow may appear to be a mouse.
• False sense of presence: The sense that someone is looking over your shoulder, in the room or lying next to you in bed, but when you look, no one is there.
• False sense of something moving past: The awareness of something fleeting past or moving in the periphery, or sense something darting across the floor or someone walking through the hallway.
• Hallucinations and delusions: Seeing or believing things that are not true, which can cause a range of feelings from undisturbed or anxious to agitated or frightened.

Types of Hallucinations

Some hallucinations recur with frequency, while others happen just once. Hallucinations are more common in people with sleep or cognitive problems or depression. While increasing medications can sometimes put people at risk for the onset of hallucinations, most people with Parkinson's will experience hallucinations after 10 years of diagnosis.

Hallucinations are less likely to occur when someone is engaged in an activity. They are more likely to happen when a person has vision problems, is alone or at night. Understanding how people with Parkinson's might experience these can help reduce the stigma.

Types of hallucinations include:

• Visual: Seeing people or animals that are living or deceased.
• Auditory: Hearing things like voices or music.
• Olfactory: Smelling things that aren’t there, such as chemicals burning or gasoline.
• Tactile: Feeling as if something is on or underneath the skin, which might cause scratching.

Visual hallucinations can seem as if you are having a vivid dream, despite knowing you are awake — seeing distorted, cartoon-like strangely colored animals and people, bugs, figures hovering on the ground. People have reported seeing fairies or colonies of tiny people. Some people find these entertaining to watch, while others find it frightening.

Common visual hallucinations for people with PD can include:

• Seeing someone sitting in your home, possibly in your living room or at your dining table. It can range from a friendly presence like a visitor or to the distressing sense of an intruder.
• Some veterans with PD have reported seeing elaborate, detailed military bootcamps outside, with a drill sergeant and service members.
• People in cities and urban areas may see out-of-place wildlife, such as deer or skunks.

Auditory hallucinations can cause distraction or poor sleep. People may think neighbors are doing yard work or having a party in the middle of the night. Sounds may seem to come from the attic, basement or walls.

Understanding Delusions

Delusions can distress the person with Parkinson's and their loved ones, sometimes causing isolation, embarrassment, fear, suspicion or jealousy, or resulting in anger or violence toward a care partner. Delusions can create safety or legal problems. Care partners, who may recognize psychosis symptoms before the person with PD, should share these with their loved one’s doctor.

Though delusions are not reality based, they often seem real to the person experiencing them. These often have common themes, including:

• Persecution: Believing someone is trying to deceive or bring harm. You may suspect a trusted person wants to steal from you or family is plotting against you. Some people suspect their caregiver is trying to poison them and become suspicious of medication or food.
• Jealousy: Believing a spouse or partner is being unfaithful. Othello syndrome is the false certainty of and preoccupation with a partner’s imagined infidelity.
• Reference: Feeling like a song or a TV show is speaking directly to you. This may feel like something you want to act on.

Other forms can include:

• Fregoli delusion: Believing different people are actually a single person changing their appearance or in disguise.
• Cotard’s syndrome: Thinking you are dead, decaying, do not really exist or your blood or internal organs are missing.
• Capgras syndrome: Believing an identical imposter has replaced a friend, spouse, family member or pet.

Delirium

Seek medical attention if you experience a sudden change as they are not typical of Parkinson’s. When hallucinations or delusions begin within hours or days, it can be due to changing, stopping, increasing or decreasing a medication, or can signal another medical issue, such as:

• urinary tract infection or pneumonia
• dehydration
• substance withdrawal
• high or low blood sugar
• low blood pressure
• surgery or hospitalization
• organ failure

Managing the Impact

There are several ways to help a loved one experiencing PD psychosis. Find the best methods that work for you. These techniques can help manage the impact:

• A stable, calm, familiar environment is essential for someone experiencing psychosis.
• Keep a routine.
• Try to keep a well-lit, clutter-free home — this can minimize visual misperception, hallucinations and injuries.
• Use a nightlight in the bedroom. Unfamiliar environments might worsen symptoms.
• Offer reassurance that the person with PD is safe, loved and symptoms are not their fault. This can the reduce fear and shame around hallucinations and delusions.
• During an episode, do not argue or rationalize. Leave the room if necessary.
• Orient your loved one with calendars, photos or messages on post-its.
• Remove items that may cause a safety issue, such as area rugs. Explore our home safety page for more.

Focusing on good sleep habits, getting enough exercise and seeking out stress management strategies are vital for people experiencing hallucinations and delusions and those who care for them. Care partners also need adequate rest and breaks from care to burnout risk.

Your doctor can recommend safe management strategies or adjust your medications. Many antipsychotic medications used to treat psychosis should not be used in PD — they can act on dopamine receptors and worsen Parkinson’s symptoms.

While not for everyone, Pimavanserin (Nuplazid®) is a newer antipsychotic that does not block dopamine. It is approved by the U.S. Food and Drug Administration (FDA) specifically for the treatment of Parkinson's disease psychosis. Other medications considered safe options to treat psychosis in PD include Quetiapine (Seroquel®) and Clozapine (Clozaril®). Learn more about medications used to treat psychosis.

Learn More

Explore our resources about hallucinations and delusions in Parkinson’s:

• Webpage: Hallucinations/Delusions
• Library: Psychosis: A Mind Guide to Parkinson's Disease
• Videos: CareMAP: Managing Advanced Parkinson's

Researchers found changes in molecules in the brain and blood that are associated with Parkinson’s, they also found changes linked to certain symptoms

Two of the most widely recognized hallmarks of Parkinson’s disease (PD) are tremors and slowed movement. However, when these symptoms appear, it means that people with PD have already lost up to 60% of their dopamine neurons. Neurons are nerve cells in the brain that are crucial for maintaining a balanced and functioning nervous system.

Diagnosing and treating Parkinson’s early can fend off severe symptoms for years. Inversely, when a diagnosis is delayed, rapid decline can be more likely to occur. Unfortunately, there are no tools, besides assessing symptoms, to diagnose Parkinson’s or predict the course of the disease. However, a new study in Nature Communications has found evidence of molecular changes in the brain and blood of people with Parkinson’s who experience cognitive and movement complications of PD.

Finding molecular changes in the blood that mirror changes in the brain is essential for developing new minimally invasive tests that can diagnose Parkinson’s, be able to track the course of the disease, and monitor how it is responding to treatment.

Parkinson’s symptoms are primarily caused by the death of dopamine neurons in the brain. Dopamine allows us to regulate motivation, memory, cognitive functions, and motor skills. One critical region in the brain that relies on dopamine for these functions is the striatum, which has two regions that behave differently in Parkinson's:

• The caudate: When dopamine levels drop in this area, it leads to cognitive impairment.
• The putamen: When dopamine levels drop in this area, motor control is impacted.

Both regions are densely populated with the same kinds of neurons. While we know how these areas impact movement and cognition, we still do not understand the molecular mechanisms underlying these distinct responses in the human brain.

To learn more about changes in these brain regions, which are difficult to study as they are deep in the brain, researchers used brain samples from 35 people who died with Parkinson’s and 40 people who died without neurological issues. They looked for changes in RNA (a molecule essential for various biological processes) and identified thousands of RNAs that were different in those with Parkinson’s compared to those who did not have the disease.

Study Findings

1. RNA changes in the brain: Many of these RNA changes were linked to the function of the synapse, the special connection between nerve cells that allow them to communicate with each other. Researchers found decreases in RNAs involved in dopamine neuron dysfunction and death; an increase in RNAs involved in inflammation and immune hyperactivation; and an increase in RNAs involved in stress response.

2. Mirroring patterns in the blood: To compare whether the changes they observed in the brain were mirrored in blood samples, the researchers accessed samples from the Parkinson’s Progression Markers Initiative (PPMI), which has collected blood from people who do and do not have Parkinson’s. They found that the RNA levels in the brain were altered in the same direction in the blood.

3. Changes associated with cognitive impairment: The researchers found 57 RNAs in the caudate that were significantly altered in donors that had been diagnosed with Parkinson’s disease dementia. When researchers looked at the differences in RNAs in the blood of people with PD vs. healthy controls, they found a few RNAs that were altered in people with PD.
4. Changes associated with movement symptoms: The researchers found 18 RNAs in the putamen that were significantly altered in donors who experienced levodopa-induced dyskinesia. When researchers looked at differences in RNAs in the blood of people with PD vs. healthy controls, they found no significant differences.
5. Differential patterns depending on age at PD onset: The researchers also found differences between the brains of people who were diagnosed with Parkinson’s before and after the age of 55 — those who were diagnosed earlier showed fewer molecular changes than those who were diagnosed later. Similar results were found in blood.

Study Highlights

• People with Parkinson’s have unique changes in RNA molecules in brain regions that rely on dopamine for regulating motivation, memory, cognitive functions, and motor skills.
• Similar RNA changes were also observed in blood samples of people living with Parkinson’s.
• Patterns of RNA changes were associated with certain symptoms (e.g., cognitive decline, motor complications) or disease features (e.g., early vs. late onset).

What does this mean?

Today, only invasive tests can track molecular changes in the brains of people with Parkinson’s. This study has found that molecular changes that happen in the brain can also be found in the blood. In the near future, this information can be leveraged to develop minimally invasive blood tests that could be used to help confirm a Parkinson’s diagnosis, track disease progression, and evaluate how the disease is responding to treatment. However, more studies are needed before these findings can be used as a clinical tool.

What do these findings mean to the people with PD right now?

People with Parkinson’s symptoms should talk to their doctor about screening.

Learn More

The Parkinson’s Foundation believes in empowering the Parkinson’s community through education. Learn more about PD and the topics in this article through our below resources, or by calling our free Helpline at 1-800-4PD-INFO (1-800-473-4636) for answers to your Parkinson’s questions.

• Getting Diagnosed
• Can We Put the Brakes on Parkinson’s Progression?
• A New Test Could Detect Parkinson’s Before Symptoms Appear
• Join A Study

What are common Parkinson’s disease (PD) symptoms and what causes them? Each person’s experience with Parkinson’s is unique, as are their symptoms and management strategies.

In our latest Neuro Talk, Chief Scientific Officer James Beck, PhD, discusses common movement and non-movement symptoms of Parkinson’s, as well as available treatments and ongoing research. Learning how to navigate symptoms can take time, but ultimately helps empower you to live better with PD.

LEARN MORE ABOUT PARKINSON’S SYMPTOMS

Watch the latest Parkinson’s disease videos on our YouTube channel.

Though bladder problems are one of the most common challenges in Parkinson’s disease (PD), they are rarely discussed with a doctor. Parkinson’s can impact bladder function in many ways, including urinary urgency, leakage and urinary tract infections. Untreated, some urinary issues can lead to cognitive problems. Discover why it’s important to discuss urinary difficulties with your healthcare provider and learn about the treatments that address challenges and improve quality of life.

This article is based on Parkinson's Disease and the Bladder, a Parkinson’s Foundation Expert Briefing webinar presented by Abhimanyu Mahajan, MD, MHS, Movement Disorders Neurologist and Assistant Professor of Neurology, University of Cincinnati and Ankita Gupta, MD, MPH, FACOG, Associate Fellowship Director, Female Pelvic Medicine & Reconstructive Surgery, University of Louisville Health.

PD and Pelvic Floor Health

In Parkinson's, the brain does not produce enough dopamine. The decrease in this feel-good brain chemical impacts more than movement and mood. Parkinson’s-related brain changes can lead to a host of symptoms in the pelvic floor region that can impact gastrointestinal and urinary systems, sexual health and more.

Constipation, common in PD, can begin as early as 20 years before the key movement symptoms that lead to a diagnosis. Urinary symptoms, however, often begin after someone has lived with Parkinson’s for 10 years or more.

Urinary and Bladder Issues

Parkinson’s impacts the autonomic nervous system (the system in charge of the body’s unconscious actions, such as pumping blood, blinking and breathing). When this system causes urinary issues, it’s known as neurogenic bladder dysfunction.  

These urinary problems are widespread in Parkinson's and affect women and men. Whether doctors do not bring up urinary health or people are reluctant to mention issues, research shows that anywhere from 24% to 96% people with PD experience urinary symptoms.

Urinary challenges are also commonly associated with increased age and worsening cognitive function. The average age of a person receiving a Parkinson's diagnosis is 60 — around the same age people commonly experience:

• Urinary urge incontinence: urgency accompanied by leakage
• Stress incontinence: urine leakage when coughing, sneezing or exercising
• Mixed incontinence: leakage after a sensation of urgency and with physical movement

Unless asked, women are far less likely to report urinary challenges compared to men. When asked, almost 50% of all women in the U.S. more than 80 years old report at least one relevant urinary symptom.

In addition to urinary incontinence and leakage, PD can cause:

• difficulty initiating urination.
• failure to fully empty the bladder.

Risks Related to PD Urinary Symptoms

In Parkinson’s, the inability to delay urination can lead to falls.

Neurogenic orthostatic hypotension (nOH), when blood pressure drops when moving from sitting to standing, or from lying down to rising, can be common in people with PD and other nervous system disorders. Urinary urgency combined with nOH can increase a person’s fall risk.

PD-related balance difficulties (postural instability), trouble moving and walking and waking to use the bathroom at night — when Parkinson’s medications are not fully effective — can also increase the risk of falls connected to urinary urgency and bladder issues.

Sudden cognitive changes are unusual in PD. These should be urgently addressed and may be caused by a urinary tract or bladder infection, other infections, or a medication side effect. 

Assess and Address Bladder Health

If you experience urinary issues, talk to your healthcare provider. To prepare:

• Keep a 24-hour overactive bladder diary. This can help you keep track of urination timing and frequency and provide greater detail to your doctor.
• Think about your treatment goals. Do you need enough relief to sleep better or are you hoping to get through an outing without overly frequent trips to the restroom?
• Aim to take PD medication on time, every time. Most people with PD know medication timing is often essential to controlling PD symptoms. Staying on schedule can also impact bladder function.

Your doctor may refer you to a specialist. Urologists are doctors who focus on the urinary system, while urogynecologists specialize in treating pelvic floor disorders in women.

Urinary Issue Treatments

Your doctor will try to get to the root of any urinary issues, looking for reversible causes such as an infection or diuretics (water pills). It’s not uncommon for people with Parkinson’s to have bladder symptoms that predate their PD diagnosis.

A doctor might have you stand or sit and cough to assess for stress incontinence or use an ultrasound or catheter to confirm whether your bladder is fully emptying. Urodynamic testing can help your healthcare provider determine whether your bladder fills and empties at normal pressures and reveal urinary dysfunction.

Treatment is tailored to a person’s symptoms and goals. Non-surgical options include:

• Kegel and pelvic floor muscle strengthening exercises, which can benefit men and women.
• Referral to pelvic floor physical therapy.
• Behavioral and lifestyle modifications, such as practicing urge suppression and urinating at fixed intervals to retrain the bladder and increase its holding capacity.
• Botulinum toxin injections for overactive bladder.
• For women, a continence-support pessary — a tailored, soft, vaginal device, typically removable, that can improve bladder control. This option may be challenging as Parkinson’s advances.

Medication therapy is also an option. Beta-3 agonists mirabegron (Moretti®) and vibegron (Gemtesa®) are once-a-day medications to control bladder urgency and frequency.

While anticholinergic drugs are often a first-line therapy for bladder issues, research finds cognitive slowing can be a side effect to these drugs. Use should be avoided in people older than 70, as there is a greater potential for anticholinergic-related hallucinations and confusion. Oxybutynin (Ditropan®), darifenacin (Enablex®), tolterodine (Detrol®), trospium (Sanctura®), phenoperidine fumarate (Toviaz®) and tofenacin succinate (VESIcare®) are among the anticholinergics used to manage overactive bladder.

Surgical options for bladder challenges include:

• Injection of a hydrogel urethral bulking agent. This acts as a plug to stop urine leakage during coughing, exercise or other movement.
• Sacral neuromodulation. Electrical stimulation through an implanted bladder pacemaker-like device, to improve urinary urgency, incontinence and retention.
• Urethropexy to adjust and support the urethra for bladder control.
• Retropubic colposuspension. Reinforcement for the bladder and urethra to improve urinary incontinence.
• For men, bladder sling surgery, which supports the urethra to boost bladder control.
• For women with stress incontinence, urethra-supporting synthetic midurethral sling surgery or autologous fascial sling surgery.

Learn More

Explore our resources about urinary issues and Parkinson’s:

• Fact Sheet: Urinary Problems in Parkinson's Disease
• Blog: Tips for Intimacy & Incontinence with Parkinson’s
• Web Page: Urinary Incontinence

The most well-known Parkinson’s disease (PD) symptoms are movement-related — tremor, muscle stiffness, slow movement, trouble moving and walking. However, many people with Parkinson’s find non-movement symptoms — including sleep disturbances, depression, psychosis and constipation —more troublesome and disabling than movement symptoms. 

In Parkinson’s, a protein found in the brain called alpha-synuclein accumulates abnormally in the nervous system, forming clumps. These clumps lead to changes in the normal function of brain cells. Interestingly, alpha-synuclein clumps within the nerves of the gastrointestinal (GI) tract have also been linked to a decrease in the strength and coordination of the bowels, resulting in constipation. More than 60% of people with Parkinson’s suffer from constipation, and for most of those people it can be chronic, severe, and unresponsive to standard treatments.

The results of a new clinical trial published in the Annals of Internal Medicine show a possible treatment for constipation in people with Parkinson’s. The biotech company Enterin has developed ENT-01, a compound designed to act on nerve cells in the GI tract and prevent alpha-synuclein from clumping. An earlier study found that ENT-01 is not absorbed into the body, suggesting it acts only in the gut.

Constipation impacts more than 60% of people with Parkinson’s.

Study Results

The clinical trial enrolled 150 people with Parkinson’s and constipation, who were randomly given either ENT-01 or a placebo for 25 days. The results of the study showed:

• People with Parkinson’s and constipation who received ENT-01 had a significant increase in the number of daily bowel movements and had better stool consistency as well as ease of stool passage.
• There were no serious adverse effects of ENT-01. The most common side effects were nausea (experienced by a third of participants) and diarrhea (experienced by 20% of participants).
• A small number of participants with psychosis also saw improvements in their symptoms; however, researchers note that the study was not designed to examine improvements in cognitive symptoms.

What does this mean?

In this trial, ENT-01 was shown to help people with Parkinson’s who experience constipation. The compound will undergo further clinical testing to examine the safety and effectiveness of long-term use before it can become available.

What do these findings mean to the people with PD right now?

People with Parkinson’s who experience constipation will not yet have access to ENT-01 and should talk to their doctor about current treatment options. Depending on the clinical trial process, ENT-01 may be a treatment option for the PD community in the next few years.

Can this drug also help with cognitive issues?

A small number of participants in this study who experience psychosis saw improvements in their cognitive symptoms. However, this study was not designed to examine these symptoms, so the Parkinson’s Virtual Biotech has designed a study that is. This new project will assess the potential of ENT-01 and how it may impact people with Parkinson’s who experience memory problems.

Through our collaboration with the Parkinson’s UK, the Parkinson’s Virtual Biotech, is fast-tracking the development of new therapies that could treat, and ultimately cure, Parkinson’s. ENT-01 is one of these new therapies.

Learn More

The Parkinson’s Foundation believes in empowering the Parkinson’s community through education. Learn more about PD and the topics in this article through our below resources, or by calling our free Helpline at 1-800-4PD-INFO (1-800-473-4636) for answers to your Parkinson’s questions.

• Constipation & Nausea
• Constipation and Other Gastrointestinal Problems in Parkinson's Disease
• Podcast Episode 135: Feeling Nausea with Parkinson’s
• How an Innovative Research Center Studies the Gut–Brain Connection