How To Cope With Parkinson’s Psychosis
Caregivers of people with PD and other neurological conditions that cause hallucinations and delusions can engage in a variety of behavioral interventions to keep their loved ones calm and in control during a psychotic event. However, the effectiveness of approaches like redirection and validation therapy depend on the severity and frequency of ones episodes. While these techniques may prove helpful from time to time, Dr. Dewey believes that these efforts are generally unsuccessful over the long term. The best step is to notify your loved ones doctor at the first sign of new or worsening psychotic symptoms to avoid unnecessary injury, stress and even placement in a long-term care facility.
It is important to maintain an honest relationship with your loved one, asking often about any abnormal ideas and experiences they may be having. Family members are usually surprised to learn that their loved one is experiencing these episodes, because many patients with PD are reluctant to divulge this information unless specifically asked.
Remember that not all PD patients will experience severe hallucinations or delusions. If your loved one seems to be doing well, exercise caution when any dosages are changed or medications are added or discontinued. Tweaking a medication regimen should ideally happen one change at a time in order to pinpoint positive and negative effects of a single variable.
Causes Of Pd Psychosis
Researchers do not know precisely what causes psychotic symptoms in some PD patients, but there are certain risk factors that can play a role. A patients age, the length of time they have lived with PD, the severity of their other symptoms, and whether they are on medications that increase levels of dopamine in the brain can all play a part in the development of psychosis.
Many of the prescriptions used to treat the motor symptoms of PD do so by increasing the amount of dopamine in the brain. Unfortunately, elevated dopamine levels can contribute to psychotic behaviors.
Phenomenology Of The Hallucinations
We grouped together in this category three types of phenomena. The most frequent type was presence hallucinations . The patient had the vivid sensation of the presence of somebody either somewhere in the room or, less often, behind him or her. In all cases, the presence was that of a person, and in one case it was also occasionally the presence of an animal . In seven cases, the presence was that of a relative . In all the other cases the presence was unidentified. The presence hallucinations were commonly as vivid as a hallucinated scene and were described as a `perception’. For instance, one patient said: `the image is behind me’, a second said: `I see someone arriving I turn back but nobody is there’, a third said: `I take a look I don’t see anything, but it is engraved in my mind’, and another said: `I have the impression that my mother is always there, that she is about to come into sight’. The passage hallucinations consisted of brief visions of a person or an animal passing sideways. If an animal was seen, the species was almost invariably specified , and in two instances it was a dog previously owned by the patient. Illusions occurred in nine patients . In five cases the illusion consisted of the transformation of an object into an animal .
Case 1 .
Case 2 .
Formed visual hallucinations
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How Can You Tell If Someone Is Hallucinating
Sometimes the person may appear to be hallucinating, but there is another cause . The following tips can help to identify hallucinations:
- Hallucinations differ from misperceptions or misidentifications. Listen to what the person is describing, and check if anything could be causing what they are experiencing. For example, if they describe a swarm of insects, and there is a busy pattern on a carpet, it may be a misperception. By changing or covering the carpet, the misperception may stop.
- If the person seems to be having auditory hallucinations , arrange to have their hearing checked. If the person wears a hearing aid, check that it is working properly at the right setting, and encourage them to wear it. The person may be having problems with their hearing, rather than hallucinating.
- If the person seems to be having gustatory hallucinations , make sure they are getting regular dental check-ups to rule out other causes such as tooth decay or denture cream. For more information see Dental care and oral health.
How Is Psychosis Managed
The urgency of treatment will depend on the type and characteristics of psychosis. Sometimes, when the hallucinations are mild and benign, and insight is retained, it is best that the Parkinson regimen be kept as is. However, when a patient is experiencing more threatening paranoid delusions, then more aggressive treatment is warranted .
The management of psychosis includes:
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At What Stage Of Dementia Do Hallucinations Occur
Hallucinations are caused by changes in the brain which, if they occur at all, usually happen in the middle or later stages of the dementia journey. Hallucinations are more common in dementia with Lewy bodies and Parkinsons dementia but they can also occur in Alzheimers and other types of dementia.
What Triggers Psychosis In Parkinsons Disease
Psychosis in Parkinsons disease is believed to be due to long term use of parkinsonian medications especially dopaminergic and anticholinergic drugs . However, significant medication exposure is no longer a pre-requisite in Parkinsons disease psychosis . The continuum hypothesis states that medication-induced psychiatric symptoms in Parkinsons disease starts with sleep disturbances accompanied by vivid dreams, and then develops into hallucinations and delusions, and ends in delirium. However this theory is now being challenged .
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Signs And Symptoms Of Lewy Body Dementia
As with Alzheimers disease or Parkinsons disease, the symptoms of Lewy body dementia worsen over time, with intellectual and motor functions deteriorating, typically over several years. Despite the overlaps, however, there are symptoms that indicate the disorder is indeed LBD and not another condition.
While patients with LBD lose cognitive function, they are less prone to the short-term memory loss associated with Alzheimers disease. More commonly, they experience greater problems with executive functions of planning, decision-making, and organization, as well as difficulties with visual perception, such as judging and navigating distances. This can cause you to fall or faint frequently or become lost in familiar settings. Lewy body dementia can also cause sleep disturbances, including insomnia and daytime sleepiness.
If you have Lewy body dementia, you will also exhibit at least two of four core features:
Changes or fluctuations in awareness and concentration. You swing from a state of alertness to appearing drowsy, confused, or staring into space. These episodes can be unpredictable and last anywhere from a few seconds to several hours.
Spontaneous Parkinsons-like motor symptoms, such as slowness of movement, rigid muscles, tremor, lack of facial expression, or abnormal gait.
Recurrent visual hallucinations or delusions, such as seeing shapes, colors, people, or animals that arent there or conversing with deceased loved ones.
Treatment Not A Must Early On
Typically, people with PD who develop psychosis dont do so until five to 10 years into their disease course, Dr. Hui says. For some, particularly early on, mild psychosis symptoms may be manageable without treatment. If the hallucinations are very mild and fleeting, we may not treat it if the patient is aware it is not real and can pretty much ignore them, she explains. We start treating when hallucinations become more severe or scary, like seeing attackers, or thinking someone is breaking in, and it interferes with activities of daily living or is emotionally distressing.
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Talk About Your Hallucinations And Delusions
Your hallucinations or delusions can be distressing for those around you. They may be unsure how to react so let them know what you are going through and how best they can help you. They will be more able to support you if you share your experiences with them, particularly if you know what the most common triggers are and what can be done to make the hallucinations or delusions go away.
Counselling can sometimes be helpful, particularly if the hallucinations or delusions strain relationships. Your doctor will be able to advise on the available types of counselling.
A Caregivers Guide To Parkinsons Disease Psychosis
While more than 50% of those taking carbidopa-levodopa may experience psychosis , medication management of these symptoms is a balancing act. First, families must bring psychotic behavior to the attention of your medical team. Medical causes of the behavior, like infection must be ruled out, followed by a review of medications and possible medication adjustments before a lifestyle changes and possible medications for treatment are added.
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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
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How Is Parkinson Disease Diagnosed
Parkinson disease can be hard to diagnose. No single test can identify it. Parkinson can be easily mistaken for another health condition. A healthcare provider will usually take a medical history, including a family history to find out if anyone else in your family has Parkinson’s disease. He or she will also do a neurological exam. Sometimes, an MRI or CT scan, or some other imaging scan of the brain can identify other problems or rule out other diseases.
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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Could Covid Delirium Bring On Dementia
Illustration by Fatinha Ramos
In her job as a physician at the Boston Medical Center in Massachusetts, Sondra Crosby treated some of the first people in her region to get COVID-19. So when she began feeling sick in April, Crosby wasnt surprised to learn that she, too, had been infected. At first, her symptoms felt like those of a bad cold, but by the next day, she was too sick to get out of bed. She struggled to eat and depended on her husband to bring her sports drinks and fever-reducing medicine. Then she lost track of time completely.
For five days, Crosby lay in a confused haze, unable to remember the simplest things, such as how to turn on her phone or what her address was. She began hallucinating, seeing lizards on her walls and smelling a repugnant reptilian odour. Only later did Crosby realize that she had had delirium, the formal medical term for her abrupt, severe disorientation.
I didnt really start processing it until later when I started to come out of it, she says. I didnt have the presence of mind to think that I was anything more than just sick and dehydrated.
Delirium is so common in COVID-19 that some researchers have proposed making the condition one of the diseases diagnostic criteria. The pandemic has sparked physicians interest in the condition, says Sharon Inouye, a geriatrician at the Marcus Institute for Aging and Harvard Medical School in Boston, who has studied delirium for more than 30 years.
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.
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Hallucinations And Rem Sleep Disorders In Parkinson’s Disease
At timestamp 1:58 in this recording of Thrive: HAPS 2020 Caregiver Conference, you will find a one hour talk by neurologist Joohi Jimenez-Shahed, MD. In it she delves into what REM sleep behavior disorder is and is not, and the distinctions between hallucinations, delusions, and delirium. Managment options for RBD and hallucinations are included.
What Are Hallucinations
Hallucinations are when someone sees, hears or feels something that is not actually there. They are best described as deceptions or tricks played by the brain that involve the bodys senses. Hallucinations are not dreams or nightmares. They happen when the person is awake and can occur at any time of day or night.
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What Are The Causes
Parkinsons, 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
Common Causes Of Hallucinations
Hallucinations most often result from:
- Schizophrenia. More than 70% of people with this illness get visual hallucinations, and 60%-90% hear voices. But some may also smell and taste things that aren’t there.
- Parkinson’s disease. Up to half of people who have this condition sometimes see things that aren’t there.
- Alzheimer’s disease. and other forms of dementia, especially Lewy body dementia. They cause changes in the brain that can bring on hallucinations. It may be more likely to happen when your disease is advanced.
- Migraines. About a third of people with this kind of headache also have an “aura,” a type of visual hallucination. It can look like a multicolored crescent of light.
- Brain tumor. Depending on where it is, it can cause different types of hallucinations. If it’s in an area that has to do with vision, you may see things that aren’t real. You might also see spots or shapes of light. Tumors in some parts of the brain can cause hallucinations of smell and taste.
- Charles Bonnet syndrome. This condition causes people with vision problems like macular degeneration, glaucoma, or cataracts to see things. At first, you may not realize it’s a hallucination, but eventually, you figure out that what you’re seeing isn’t real.
- Epilepsy. The seizures that go along with this disorder can make you more likely to have hallucinations. The type you get depends on which part of your brain the seizure affects.
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Whats The Treatment For Parkinsons Disease Psychosis
The single most important thing to do when it comes to Parkinsons disease psychosis is to tell your care providers and partners the minute you notice changes in your vision, hearing, thinking and behavior. The earlier they know whats going on, the sooner they can begin interventions to help you feel better.
Once you bring your concerns up to your doctor, they will typically do a clinical evaluation, review your medications and dosage, assess your lifestyle and determine the severity of your symptoms. Depending upon what they find, they may refer you to counseling or therapy, adjust your medication, change your medication, eliminate medication or do all of the above. If none of those strategies work, they may try antipsychotic drug therapy to see if they can adjust chemical levels in the brain. This can bring with it an entirely different set of problems so its important to be invested every step along the way and be sure youre well-informed before you move in that direction.
Parkinsons Disease Psychosis: Hallucinations Delusions And Paranoia
As part of Parkinsons Disease and its treatment, hallucinations, illusions, delusions, suspiciousness and paranoid behaviors occur in over 50% of patients. In this 1-hour webinar Dr. Christopher Goetz suggests lifestyle changes, medication adjustments and a recently FDA approved drug to specifically treat psychosis in Parkinsons Disease.
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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.