“PD and Psychosis” – Q&A Webinar Notes

Northwest Parkinson’s Foundation (nwpf.org) hosts a webinar series.  Today (Dec 4, 2017), the webinar was about “PD and Psychosis.”  It was an open-ended question-and-answer session.  The “answerer” of the questions was Amanda Herges, PhD, a licensed clinical psychologist specializing in rehabilitation and neuropsychology at Evergreenhealth Medical Center in Kirkland, WA.  She answered questions emailed to the organizers in advance and live on these topics — anxiety, memory loss, cognitive changes, aggression, hallucinations and delusions in those with Parkinson’s Disease.

Brain Support Network volunteer Denise Dagan took notes and shared them below.


Northwest Parkinson’s Foundation
Webinar – PD and Psychosis
December 4, 2017
Guest:  Amanda Herges, PhD, clinical neurologist

Q. Man with Parkinson’s (PD) has periods of intense anxiety.

A. It is related to some of the pathways related to psychosis, and is a typical PD symptom.  25-50% of those w/PD will have anxiety as a symptom.  It is more common in those who had mood issues before their PD diagnosis.  Most commonly patients will report increase of anxiety as their Parkinson’s medication  wears off between dosing, or while navigating in public, especially approaching a narrowing of their pathway, like going through doorways.  Dr. Herges recommends tracking these symptoms, like you do your PD symptoms (time, situation, when were last medications, etc.) and talk with your neurologist if it is affecting your lifestyle.  A therapist can help you learn to live with anxiety, too.

Q. Women with PD noticed short term memory deficit.  How can I live with this?

A. One-third of those w/PD will notice short term memory loss at some point.  Short term memory issues in PD are very different from short term memory issues in Alzheimer’s.  Dr. Herges suggests using electronic devices to help remember things.  If you don’t use electronics, keep a calendar, use notebooks, post-its, etc. to keep track of things.  Do one thing at t time.  Attention problems are also common in PD, so it is easy to become distracted.  Keep distractions to a minimum.  Ask friends and family to help you remember and/or stay on task.

Q. Man asks if PD progression can be projected from a series of MRIs taken over time?

A. MRI doesn’t show PD pathology.  Your neurologist may use a PET scan to image PD.  Taking images over time is not recommended.  They don’t show progression and they are expensive.  Clinical exam is a better assessment for physical symptoms.  Repeated neuropsychological testing will show cognitive decline.

Q. Man asks what is punding and how are its symptoms controlled.  Can this behavior be modified by medication?

A. Punding is repetitive sorting of materials.  Often goes unnoticed if it is related to a long time hobby.  Example: cutting pictures out of magazines and used to use them for art projects, but no longer uses them, just obsessive about cutting them out and sorting them.

Punding can be controlled with medication, but if the behavior is not harmful or interfering with quality of life, medication is not necessary.  The more medications you take, the more the likelihood of adverse medication interactions or medication mistakes so sometimes it is better to manage behavior without medications.  Talk with your doctor about your individual situation.

Q. How are hallucinations impacted by PD medications?

A. Early in PD if you have hallucinations or illusions (peripheral fleeting impression of bugs, shadows out of the corner of your eye, etc.), they can be caused by Sinemet, Requip or Mirapax.  Recent research shows most hallucinations or illusions cannot be accounted for by medications.  True hallucinations usually occur later in progression of PD or the diagnosis is not PD, but Lewy Body Dementia (LBD).

Q. Woman asks if memory loss always comes with cognitive decline?

A. Depends on what you are calling cognitive decline.  Most people become concerned, when they have a memory change, that it will be precipitous.  Memory change can be disease progression but there are many causes of memory change, including changes in medications that cause sleepiness or fatigue which affects memory.  Illness, even just a cold, or dehydration, and loss of sleep can all cause memory loss.  Thyroid issues, low vitamin B12, depression can also affect memory.  Talk with your doctor whenever you have memory loss.

Q. Woman’s mom has had PD for 10 years and recently is having hallucinations (mostly animals) and long-term memory issues/delusion (believing her dead father was coming to Thanksgiving dinner).

A. With respect to her hallucinations, regardless of the cause, always discuss with your neurologist to determine the impact of your PD meds on the hallucinations.  An adjustment to your meds should help, but it is a process of rebalancing your medications vs symptoms control.  Adding an atypical antipsychotic (Seroquel, Quetiapine) can help treat hallucinations.

Also try changing your home environment:
– Keep rooms well lit, especially in the late afternoon and into the evening so shadows don’t contribute to frequency of hallucinations.
– Let the person having hallucinations keep a flashlight handy at night so they can take a look to see if there is really something there in the dark.
– Reduce patterned fabric in upholstery and artwork.  Prints and patterns contribute to visual discrepancies which can increase frequency of hallucinations.
– Cover mirrors or other reflective surfaces that can cause visual distortions and increase frequency of hallucinations.

With respect to her delusions or serious memory impairment (forgetting father died), it depends on the emotional state of the person with PD or LBD.  Challenging memory impairment can cause more stress and depression.  Sometimes, it is best to ignore these types of comments.

Q. A person with PD since 2006 and taking Sinemet is hallucinating.

A. Talk to your neurologist because it was thought hallucinations were part of taking carbidopa/levodopa, but only your neurologist can tell what’s going on with you.  See the prior answer for living with hallucinations.

Q. What is the difference between hallucinations and delusions?

A. Hallucinations is visual disturbance caused by changes in the chemistry and function of the brain.  In PD it is usually visual, sometimes people who speak, so that’s also auditory.  Usually they see nonthreatening people or animals.

Delusions are beliefs that have no basis in fact.  Sometime they are difficult to detect because they are not completely implausible.  Person experiencing the delusion is often persistent in their belief.  Delusions can be paranoia over finances, especially in those who have been business people, or money handlers (head of household, etc.).  A delusion can be a belief their spouse is having an affair or that they are being persecuted (trying to put me in a home).  Hyper-religeousity, compulsive spending or donating, gambling, etc. can also stem from delusions.

Dr. Herges recommends not trying to handle delusions on your own when they begin to affect quality of life, especially loss of trust, or finances in the family.

Q. Please describe a neuropsychological evaluation.

A. Assessment or evaluation is performed by a PhD with training in PD.  They use standardized tests to see how well you perform on memory, attention, processing speed, executive functioning against normal controls of the same age.  The test determines your strengths and weaknesses on these skills and the doctor makes recommendations for functioning with your unique skills and deficits.

These assessments are required pre-DBS surgery.  DBS is contra-indicated in situations where the DBS candidate already suffers severe cognitive deficits because DBS can worsen cognition and make it more difficult to function.

Assessment may also include mood and depressive symptoms, hallucinations, delusions, etc., if applicable.

Patients fill out a questionnaire beforehand, followed by 1-1.5 hour interview of the patient and caregiver by the doctor, then the standardized testing with breaks so exhaustion doesn’t impact performance on the test.  Testing could be broken into more than one day.  Afterward, Dr. Herges scores all tests, writes up a report of her findings and asks the patient back for a review of that report and shares recommendations for living well with deficits and suggestions for playing on strengths.

Q. Man asks if Dr. Herges sees increased aggression in those with PD and meds to help with this?

A. No, people w/PD have the opposite of aggression.  They are more likely to experience apathy (lack of initiation and the brain’s inability to start moving).

Aggression is more likely in those who have hallucinations and/or delusions with cognitive impairment, loss of insight, investment in their delusions, and loss of impulsive behaviors.
Talk to your neurologist if you are experiencing aggressive behavior to see what can be done for everyone’s safety.

If you are in a rural area where your neurologist is more of a generalist than a Parkinson’s specialist, you may be referred to a psychiatrist.  If so, make sure your neurologist, psychiatrist and pharmacist are communicating about medications prescribed for these behaviors.

Q. Suggestions for when delusions are causing agitation to the point of threatening safety?

A. 911 or your local crisis service (contact your police department for the contact number).

Stop engaging them immediately and call for help if someone becomes violent.  Before they are discharged from custody a plan will be put in place to ensure everyone’s safety.  Counseling to redevelop trust among family members may be necessary.  Sometimes, the person cannot return to the same environment if safety cannot be ensured.

Q. Are neuropsychologist evaluations covered by Medicare?

A. Yes, if it is deemed medically necessary and prescribed by a doctor for memory loss or cognitive disorder it will be covered.  If your doctor orders it to determine your ability to work, for example, it will not be covered.

Other insurances (not Medicare) are totally determined by what policy you have.  Most insurances cover at least a limited number of visits and the doctor needs to fit an evaluation and treatment into that maximum number of visits covered by your policy.  These evaluations/assessments are quite expensive to find out after the fact that you are not covered, or your coverage is limited to 75% vs 90%.  You should speak with your insurance carrier to see how much they cover before seeking an assessment.

Q. Man says hot weather affects his cognition (light headed, confused, easily distracted).

A. Usually Dr. Herges hears hot weather affecting MS, not PD.  She recommends monitoring your hydration in hot weather because dehydration can cause these symptoms.  Tell your doctor about these symptoms and, possibly, do a medication review with the doctor.

[Editor’s note:  Dr. Herges is not well-informed on the issues of hot weather affecting those with PD and LBD.]

Q. Which dopamine agonist does not cause compulsive behavior?

A. They all carry a risk for compulsive behavior.  Usually the issue is the dose.

Ask yourself and discuss with your neurologist if you are getting adequate benefit vs. compulsive behavior (eating).

Try changing to another medication or different dose.  It’s all very individual.  Just keep trying until you find the right balance.

If you really fail in finding a medication balance, you may benefit from neuropsychological counseling to learn behaviors to control the compulsive eating (or other compulsive behaviors).