The Houston Area Parkinson’s Society (HAPS) hosted a day-long conference for caregivers. One of the lectures was presented by Joohi Jimenez-Shahed, MD, head of the movement disorders center at Icahn School of Medicine at Mount Sinai. She discussed REM sleep disorders, hallucinations, delusions, deliriums, etc. And she provided methods to improve healthy sleep for people with Parkinson’s disease (PD). (Though the talk was presented at a caregiver conference, there is nothing caregiver-specific about this talk).

Dr. Jimenez-Shahed explained that REM sleep disorders (also known as parasomnias) occur when a person is sleeping, whereas hallucinations happen while someone is awake. Another important distinction is that REM sleep disorders are not sleepwalking or sleep terrors. Since REM sleep is when the brain is most active during the night, it can appear as though a person with a REM sleep disorder is experiencing night terrors.

There are three ways to treat REM sleep disorders: with medication, with non-medication treatments, and by practicing healthy sleep habits. Some medications that can alleviate REM sleep disorders are melatonin, clonazepam, and levodopa, which work to decrease the frequency of waking up and unpleasant dreams. 

Non-medication treatments include safely prepping a bedroom for sleeping (like guard rails, removing sharp objects, etc.), avoid certain medications and alcohol that cause sleep deprivation, and maintain a normal sleeping time. 

Lastly, healthy sleep habits like limiting exposure to bright lights before bed, using your bed for sleeping and sex only, and not going to bed unless you are sleepy all work to treat REM sleep disorders. 

Hallucinations can be visual (seen), tactile (touched), auditory (heard), or olfactory (smelled). They are related to a lot of other issues that people with PD can experience, like delusions, sundowning, and even PD dementia. Dr. Jimenez-Shahed shared some behavioral management techniques for hallucinations:

• Do not try to argue the patient out of the hallucinations or reason with them
• Try to go along with it when possible, to a reasonable extent
• Refocus patient’s attention on something else
• Try to find workarounds
• Some maneuvers such as turning on the lights or shining a flashlight may help dissipate the hallucinations

At this time, the lecture recordings and slides are unavailable to the public and conference attendees. 

Stanford Parkinson’s Community Outreach has a webpage with a lot of resources on hallucinations in PD.

And here is a webpage with resources for sleep issues in PD.

I listened to this lengthy lecture and am sharing a summary below. 

– August Besser

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“Hallucinations and REM Sleep Disorders in Parkinson’s Disease” – Lecture Notes

Conference Host: Houston Area Parkinson’s Society

Speaker: Dr. Joohi Jimenez-Shahed, medical director, movement disorders center, Icahn School of Medicine at Mount Sinai

November 14, 2020

Summary by August Besser, Stanford Parkinson’s Community Outreach

Compare and Contrast

• REM Sleep Behavior Disorder (RBD) is a parasomnia. A parasomnia involves undesired events that happen while sleeping. 
• Hallucinations: when someone sees, hears, or feels something that is not actually there. Not dreams or nightmares. May occur in low light or in low visibility situations. Occurs while patient is awake.

What is REM?

• REM: Rapid Eye Movement sleep; one of the 5 stages of sleep.
• People enter REM sleep within the first 90 minutes of sleep
• REM sleep occurs several times nightly as the sleep cycle repeats throughout the night
• Features of REM sleep: rapid movement of the eyes, fast and irregular breathing, increased heart rate (to near waking levels), changes in body temperature, increased blood pressure, similar brain activity to being awake, increased oxygen consumption by the brain, sexual arousal in both men and women, twitching of the face and limbs (but mostly the brain sends signals to the limbs to be still)

More about REM sleep and REM Behavior Disorder (RBD)

• During REM sleep, our brain is almost as active as it is when we are awake
• In this phase of sleep, breathing can become fast and irregular
• REM sleep is thought to help consolidate memories
• Drinking alcohol before bed reduces the amount of REM sleep we have
• People with RBD act out their dreams. There is a loss of the brain signals that keep the limbs still.

RBD is not…

• RBD can be confused with sleepwalking and sleep terrors
• In these other disorders, the sleeper is usually confused upon waking up. He/she does not become rapidly alert.
• In contrast, it is normally easy to wake a person with RBD who is acting out a dream. Once awake, he/she is able to recall clear details of the vivid dream.

Sleep Terrors

• Patients sit up in bed and let out a “blood-curdling” scream or shout. This can include kicking and thrashing. The patient may say or shout things others are unable to understand. They may have a look of intense fear with eyes wide open and heart racing. They might be sweating, breathing heavily, or feel tense. Patients may bolt out of bed and run around the house. 
• They do not respond to voices and can be hard to wake up. On awakening, they can be very confused. They might have no memory of what took place, though they may recall brief bits of a dream. Their dreams involve great danger or fright. 
• Sleep terrors occur in slow wave of sleep – the first third of time that you are asleep
• More common in childhood

Sleep Walking

• Get up from bed and walk around even though still sleep
• May talk or shout while walking
• Eyes are usually open and have a confused, “glassy” look to them; might begin doing routine daily actions that are not normally done at night.
• It can be very hard to wake a sleepwalker up. The person is confused when woken up. 
• Normally have no memory of the event
• Sleepwalking in children is fairly normal, does not usually need medical treatment, and tends to go away on its own in the teenage years.

Behaviors Associated with RBD

• Shouting, swearing, flailing, grabbing, punching, kicking, jumping, leaping
• Actions match the vivid dreams that they clearly recall
• Sleep activities can result in an injury to patient or their bed partner
• Uncommon: walking, eyes open, leaving the room (those are all common signs of sleepwalking)

Dream Content in RBD

• Most patients view their dreams as nightmares
• Dream content often involves insects, animals, or people chasing or attacking them, their relatives, or their friends
• The patient is almost always the defender and not the attacker
• Many patients are able to recount the content of their dreams upon being awakened at the time of their behavior
• Often recall vivid details of the nightmares for days, and sometimes for weeks or years

Things that can make RBD worse

• Sleep deprivation or REM sleep deprivation
• Other sleep disorders
• Alcohol
• Some medications – antidepressants, PD medications

Medication Treatments for RBD

• Goals of therapy: minimize the frequency and severity of the abnormal vocalizations; decrease the frequency and severity of the abnormal behaviors; decrease the unpleasant dreams
• Mainstays: melatonin (3-12 mg per night), clonazepam (0.25-1 mg per night)
• Others: pramipexole, donepezil, levodopa, carbamazepine, triazolam, clozapine, quetiapine

Non-medication Treatments

• Bedroom safety precautions: move objects away from the patient’s bedside (e.g., nightstands, lamps, etc.), move the bed away from the window, place a large object such as a dresser in front of the window, move sharp/edged objects away from the bed, place a mattress or cushion on the floor adjacent to the bed, use bedrails
• Maintain a normal total sleep time. Sleep deprivation will increase RBD.
• Avoid certain medications or alcohol. They can cause or increase RBD.
• Treat any and all other sleep disorders that can disrupt sleep and increase RBD.

Healthy Sleep Habits (Sleep Hygiene)

• Keep a consistent sleep schedule. Get up at the same time every day, even on weekends or during vacations.
• Set a bedtime that is early enough for you to get at least 7 hours of sleep.
• Don’t go to bed unless you are sleepy.
• If you don’t fall asleep after 20 minutes, get out of bed.
• Establish a relaxing bedtime routine.
• Use your bed only for sleep and sex.
• Make your bedroom quiet and relaxing. Keep the room at a comfortable, cool temperature.
• Limit exposure to bright light in the evenings.
• Turn off electronic devices at least 30 minutes before bedtime.
• Don’t eat a large meal before bedtime. If you are hungry at night, eat a light, healthy snack.
• Exercise regularly and maintain a healthy diet.
• Avoid consuming caffeine in the late afternoon or evening.
• Avoid consuming alcohol before bedtime. 
• Reduce your fluid intake before bedtime.

Summary: RBD

• Simple screening question can identify whether it is occurring
• Can be distressing to bed partner > patient
• Can result in injury
• Can be treated if occurring frequently enough or if severe enough

Hallucinations: The Things You Don’t “See”

• Hallucinations: when someone sees, hears, or feels something that is not actually there. Not dreams or nightmares. May occur in low light or in low visibility situations.
• 20-30% of patients with PD

Types of Hallucinations

• Visual: most common type in PD. Examples: animals, bugs, people
• Auditory: hearing voices or sounds that are not real. Examples: music, baby crying, water dripping
• Olfactory: smelling an odor that is not related to an actual source (rare)
• Tactile: feeling something imaginary, like bugs crawling on your skin (rare)
• Gustatory: sensing a bitter or abnormal taste in your mouth that has no source (rare)

Delusions

• Illogical, irrational, or dysfunctional views or persistent thoughts that are not based in reality. 
• They are not deliberate and are very real to the person with PD.
• If threatening, patients may become argumentative, aggressive, agitated, or unsafe.
• 8% of patients with PD.

Types of Delusions

• Jealousy: patient believes partner is being unfaithful. Results in: paranoia, agitation, suspiciousness, aggression.
• Persecutory: patient believes he/she is being attacked, harassed, cheated, or conspired against. Results in: paranoia, suspiciousness, agitation, aggression, defiance, social withdraw.
• Somatic: patient believes his/her body functions in an abnormal manner; has unusual obsession with their body or health. Results in: anxiety, agitation, reports of abnormal or unusual symptoms, extreme concern regarding symptoms, frequent visits with the clinician.

Illusions

• A sensory misperception in which the patient misinterprets real things in the environment.
• For example, the clothes in the closet may look like a group of people. 
• Tend to occur in low light or low visibility situations.

Sundowning

• Restlessness, agitation, irritability, or confusion that can begin or worsen as daylight begins to fade
• In situations of low light or visibility, patients may experience behavior change, and may hallucinate
• Often predictable/consistent time of onset
• More common when dementia is present

Delirium: A reversible change in a person’s level of attention and concentration

• Usually evolves quickly. May be “with it” and then “out of it.” 
• Signs: altered consciousness or awareness, disorganized thinking, unusual behavior and hallucinations.
• Often occurs in the hospital setting. E.g., during medical admission, after surgery
• There may be contributing symptoms: medications, infections, electrolyte disturbances, sleep disruption
• Prolongs hospitalization, poor prognosis

REM Behavior Disorder

• During REM sleep, people normally dream quietly
• In PD, dreams during REM sleep can become more vivid, and can be accompanied by dream reenactment. These symptoms may pre-date development of obvious PD symptoms.
• Punching, kicking, fighting, chasing, screaming, yelling, talking
• When patients wake in the middle of these dreams, they may have difficulty distinguishing dream from reality and may APPEAR to hallucinate, but these are NOT true hallucinations

Is it Lewy Body Dementia?

• A patient with features of parkinsonism and dementia starting within close association of each other – e.g., 2 years. Versus PD dementia, which occurs an extended period after initial diagnosis of PD.
• Spontaneous hallucinations before medications for parkinsonism are started, often worsened by medications that are needed for motor symptoms
• Fluctuating cognition (can be very severe)
• Paradoxical worsening with antipsychotics
• Often prominent RBD
• Need to balance medications to treat hallucinations and those to treat parkinsonism

Hallucinations

•  Distressing to patients
•  Distressing to caregivers
•  Can create difficulties with care
•  Risk factors for hallucinations in PD: dementia, depression, impaired vision, older age, more advanced PD, PD medications

But this is not always the case…

•  PD drugs stimulate dopamine, which is closely related to hallucinations. Dopamine in the frontal lobes (not movement centers). Antipsychotics block dopamine to stop hallucinations in patients with schizophrenia.
•  Some patients without cognitive impairment may have purely drug-induced hallucinations

Hallucinations are the strongest predictor of nursing home placement in patients with PD

•  Characteristics of PD patients admitted to a nursing home: older, more advanced PD, more severe motor symptoms, more severe impairments of daily living activities, more cognitively impaired, more often living alone, more hallucinations
•  Independent predictors of nursing home placement: older age, functional impairment, dementia, hallucinations (strongest predictor)

Management Strategies

•  Behavior management 
•  Simplify the PD regimen
•  Treat any underlying medical problems
•  Medications

Behavior Management of Hallucinations

•  Not all hallucinations need to be treated or addressed
•  Do not try to argue the patient out of the hallucinations or reason with them
•  Try to go along with it when possible, to a reasonable extent
•  Refocus patient’s attention on something else
•  Try to find workarounds
•  Some maneuvers such as turning on the lights or shining a flashlight may help dissipate the hallucinations
•  If significant or persistent behavioral change is associated with the hallucinations, this should be discussed with the doctor

Other Things to Do

•  Check PD medications: simplify regimen. Dopamine agonists, amantadine are most likely to cause/contribute. Is levodopa alone sufficient?
•  Check other medications: pain medications, other neuro/psych medications; antibiotics; recent changes

Medication Management

•  Must be careful with antipsychotics – usually block dopamine which can aggravate parkinsonism
•  2 acceptable dopamine-blocking antipsychotics: quetiapine (low doses can sometimes work well) and clozapine (requires blood monitoring for suppression of white blood cells)
•  Pimavanserin: antipsychotic that does not block dopamine. Works on serotonin receptors (not the same ones as depression). One of the most recently approved drugs for PD, specifically PD hallucinations. Some patients respond better than others. May take a few weeks to start working. Can be used in combination with other medications.

Summary: Hallucinations

•  Correctly identify hallucinations when they are occurring 
•  Identify/address other contributing factors
•  Simplify PD medication regimen
•  Behavioral management or acceptance may be warranted before medication management