On January 6th the Parkinson’s Foundation Wellness Wednesday topic was Thinking Changes in Parkinson’s – Engaging Neuropsychology. This was the first in a short series of Wellness Wednesdays focusing on cognition.  The new cognition series will be the first Wednesday in January, February, and March.  

In this talk Travis Turner, PhD, explained why you might be referred for a neuropsychological evaluation, what is done during such an evaluation, how the information learned during an evaluation is used, and tips for performing your best during an evaluation.  After the talk he answered several questions about coping with cognitive changes when you have PD or are caring for someone with PD.

The one-hour webinar can be watched here.

Dr. Turner referred to common cognitive changes in PD as well as hallucinations.  For more information on cognition changes and hallucinations with PD, the Stanford Parkinson’s Community Outreach Program has collected several printable guides, online articles, podcasts and webinars 

And now…on with my notes,

– Denise

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Parkinson’s Foundation

Thinking Changes in Parkinson’s: Engaging Neuropsychology, January 6, 2021

Speaker:  Travis Turner, PhD?

Who might be interested in this subject matter?

Neurologists may recommend a neuropsychological evaluation if there is some evidence that a person with Parkinson’s disease (PD) is exhibiting more difficulty than expected in accomplishing everyday tasks and cognition appears to be more of an obstacle than physical symptoms of PD.  
Neuropsychological evaluations are also a normal part of the process to determine if you are a good candidate for deep brain stimulation (DBS) surgery.

Oftentimes, our imagination of what a neuropsychological evaluation entails is worse than the actual experience.  

• People generally don’t want to suffer through hours of testing
• May assume the mental tasks will demoralizing in their difficulty level
• May fear receiving bad news (like a dementia diagnosis) at the end

What will be discussed in this talk?
Dr. Turner’s intention is to put your mind at ease.  He will explain: 

• The role of a neuropsychologist
• What to expect during a neuropsychological evaluation
• How the information collected is used, and
• Provide tips for performing your best and getting the most out of the process

What are common cognitive changes with PD?

• Mood and Anxiety changes – increased depression, apathy and anxiety
• Cognitive slowing – inability to think quickly and clearly
• Absent-minded or forgetfulness – partly due to normal aging
• Slow word finding
• Losing train of thought in conversation
• Difficulty multi-tasking

Why refer to a neuropsychologist for evaluation?
Referral to a neuropsychologist is made when cognitive changes interfere with a person’s ability to perform everyday tasks reliably and efficiently.  Why someone with Parkinson’s is having difficulty performing everyday tasks can be challenging because of the interactions between cognitive, psychiatric, and motor symptoms.

Overlapping Systems – Cognition, Motor, Mood & Anxiety (Venn diagram)

• If someone has a lot of anxiety, they may have mental distractions making it difficult to stay focused on the task at hand.
• If someone has a lot of depression, they may notice their mistakes more than usual, and perhaps catastrophize the meaning of their mistakes.  This can appear as more cognitive problems than there actually are.
• If a person has experienced significant cognitive decline, they may have more difficulty doing tasks that were once simple for them, or become overwhelmed, anxious, or irritable when doing something they find challenging

Dual tasking – doing two things at once.  Someone with Parkinson’s, they can be exerting a lot of mental effort to make their body more the way they want it to while doing a task that requires a lot of manual dexterity / fine motor skill.

The Goal of a Neuropsychological Evaluation

• Understand the factor or factors that are causing someone to struggle in everyday life
• Identify treatment and tactics to relieve that struggle for both the person with Parkinson’s and their care partner.

Components of a Neuropsychological Evaluation

• Clinical interview – clinician aims to learn as much as possible about the problems a person is experiencing.  Can take as little as 10-15 minutes.  Dr. Turner generally takes about 1/2 hour, but 1 1/2 hours is not out of the question for complicated social or medical histories.  The care partner is invited to contribute to this information gathering interview but is asked to go to the waiting room for the formal testing.
  • The focus is on the cognitive concerns that led to the referral for testing
  • If memory is a problem they will ask:
    • What kinds of things are you forgetting?
    • What kinds of things are you remembering?
  • Are there circumstances where you are more likely to struggle with your thinking than others?
    • Times of day
    • Other environmental situations
  • How do these cognitive changes impact your everyday life?
    • What are you able to do or not do?
  • Questions about your psychiatric symptoms that contribute to problems with cognition
    • History of depression, anxiety, apathy
  • Care partner’s perspective
    • No right or wrong, just more information for the tester
  • Medical history / Conditions / Issues relevant to cognition
    • Head injury where you lost consciousness
    • Stroke or stroke-like symptoms
    • Diabetes
    • Obstructive sleep apnea
  • Personal bio – who you are and where you come from, just to get to know you
• Formal testing – in a controlled environment where different facets of cognitive function can be examined.  This takes 1 1/2 – 2 hours.  The tester takes their time because they don’t want to say things are going on that aren’t or jump to conclusions just because the subject got a little confused on one test, and that you are not getting short-changed by the process.

• Attention & Processing Speed
  • Attention is the ability to focus on a specific task and maintain concentration
  • Processing Speed is evaluated by asking you to connect-the-dots, list the seasons, or list months of the calendar backwards
• Expressive & Receptive Language
  • Expressive language
    • Word finding delays are common in PD
    • Less common is naming objects or comprehending speech, but still important to examine
• Visual Spatial Abilities – sometimes affected by PD, more common in advanced or with hallucinations
  • Testing may include building with blocks or drawing 
• Problems with Memory – most common reason Dr. Turner does neuropsychological evaluations. 
  • Memory can be affected due to many causes so careful evaluation is done to determine cause
  • To have a good memory you must:
    • Attention – be alert and paying attention to what’s going on around you
    • Understand what’s being said.
      • If asked a question in another language, you can’t understand
      • If you need hearing aids and don’t have them, you can’t understand
    • Be able to Store the information
      • Like saving a computer file to a disk
      • Like filing something in the correct place in a file cabinet
    • Retrieval – like finding the files in the file cabinet
  • Note:  In those with PD, memory problems are usually caused by issues with attention and retrieval.  In PD information can usually be properly stored, but they may need cues to recall it.  (This is different than Alzheimer’s where information cannot be stored.)
• Executive functioning – using all the cognitive domains together to perform complex tasks
  • Working memory – keeping multiple pieces of information in mind to use them together
    • Math problems (adding and subtracting 3 digits)
    • Reciting a series of numbers in reverse order
  • Ability to alternate between tasks / multi-tasking
  • Ability to inhibit behavior (mental brakes)
  • Problem solving and abstract connections between different concepts
• Mood Evaluation – ask about specific symptoms to quantify degree of anxiety, depression, psychosis subject is experiencing.

Scoring – take your scores and compare with a comparative peer group (similar age, education, gender, and ethnicity) to determine the areas and levels of deficit.  

Feedback – best to have your primary care partner attend test results.  You will each tune in to different aspects of the results and have different questions.

Findings and Clinical Impressions – both strengths and weaknesses.  Discuss causes, contributing factors (performance anxiety, tremor/dyskinesia, etc.) and other rule-outs that may have contributed to findings in the test.

Diagnostic Impressions / diagnosis

• Dementia – Even though it is difficult to hear, oftentimes having a diagnosis leads to setting more realistic expectations for what the patient can do now, what can be expected of them in the future, and identifying what resources are needed to improve quality of life for both the patient and care partner.
• Mild Cognitive Impairment – Testing shows specific areas where the patient has difficulty in daily life (attention, multi-tasking, etc.), but there are strengths, too.
  • About 75% after 5-7 yrs post PD Dx have MCI
  • More common than dementia

Leverage Strengths and Limit Liability to Weaknesses – a plan to improve quality of life for patient and caregiver

Recommendations – made to the family and medical team 

• Medications to consider 
  • Neuropathologists cannot prescribe but may recommend medications to
    • improve mental acuity, or
    • limit due to cognitive impacts
• Therapy – helps with depression and anxiety.  Dr. Turner will provide tips for finding the right therapist
  • Cognitive Behavioral Therapy – Best for mood and anxiety symptoms to minimize negative thoughts and maladaptive behaviors and move toward positive thinking
    • Changing habits and behaviors is required, which can be difficult
• Safety – examples:  guns, driving, etc. 
  • People with PD will be referred to a driving professional for assessment when difficulties are seen with attention, multi-tasking, and spatial abilities
  • Driving change recommendations (not driving at night, on freeway, etc.) until driving assessment can be done
• DBS evaluation – Dr. Turner always tells the patient and care partner what his report to the DBS team will say.  He believes this is a reasonable request to make of other neuropsychologists, as well.
• Repeat testing – many patients ask to be reevaluated at some point
  • Dr. Turner only recommends this in some cases:
    • High level jobs to monitor performance / ability for safety
    • Question about the diagnosis – could this be an atypical parkinsonism?

Tips for the Evaluation

• Schedule for the time of day when you will be at your best
  • Schedule a morning appointment if you are a morning person
  • Schedule an afternoon appointment if you are not a morning person or have to drive some distance to the testing location
• Plan on a 3+ hr. visit
  • Bring medications, a snack, water
• Take medications as you normally would.  Testing should be done when you are “on” and at your best.  Testing when you are “off” does not provide an accurate picture of your abilities
• Get a good night sleep
• Make a list of questions or concerns ahead of time so you don’t get distracted and forget 
• Bring in any prior reports if you have been tested in the past – it can take 1-2 weeks to get records, so request them in plenty of time prior to your scheduled testing
• Bring a care partner to provide additional perspective
• Ask for breaks as needed – ask to use the toilet, stay hydrated
• Plan for something relaxing or rewarding after your testing appointment

Summary – PD is not easy.  Mood and cognitive changes impact quality of life for the person with PD and their care partner.  Neuro testing can provide perspective and help you find resources to compensate for cognitive changes and live your best life.

Questions & Answers
Q. How do I initiate a neuropsychological evaluation?A. Visits with movement disorder specialists (MDS) are not as long as anybody would like them to be.  Bring up cognitive concerns at the beginning of your appointment.  The MDS can let you know if your concerns are due to normal aging, or something more.  Your primary care physician can also do a cognitive screening to determine if further testing is warranted.  If you are hearing complaints from your family / friends, or if you are a care partner and your loved one is no longer reliable to complete daily tasks, you can ask for a referral for testing to determine if there is a cognitive issue.
Q. Do care partners attend the neuropsychological evaluation?A. I direct all my questions first to the patient, then to the care partner for their perspective.  It isn’t that one person is right and the other is wrong, but each person observes something different and the two perspectives provide the maximum amount of information.

Q. One of the big pieces is to make a list of cognitive concerns you have seen in the patient’s behavior.
A. Yes, bring a list of concerns to your evaluation, but please not a laundry list of every incident and grievance.

Q. Do you distinguish between depression and the effects of covid-19 restrictions?
A. Both the Michael J. Fox Foundation Insight Study and a Parkinson’s Foundation study found rates of depression, anxiety, and cognitive changes have gone up markedly with covid-19 restrictions.  The Fox Insight study showed loss of ability to socialize led to worsening of non-motor symptoms.  Physical activity fell second to social restrictions in worsening of non-motor symptoms.  

But perhaps it doesn’t matter.  If you’re feeling down and depressed, seek help.  We know that with Parkinson’s it’s not just dopamine that’s off.  Serotonin is disturbed as well so taking medications that increases serotonin levels may not make social restrictions go away, but it may make a person stop dwelling on them and get you thinking about the things you still can do.

When a person doesn’t take advantage of opportunities to socialize and exercise safely when opportunities do present themselves.  Even if it is something as mundane as not chatting with the neighbor in the driveway, like he/she used to, that can point to depression or apathy.

Q. Can prescriptions, even over the counter (OTC) medications that could cloud cognition?
A. Yes.  Amantadine helps with motor fluctuations but lowers the neurotransmitter acetylcholine.  Acetylcholine is lower in PD, anyway, so you don’t want to lower it further.  It is like taking Nyquil, then trying to do your taxes.  Medications we recommend for cognitive issues, like Aricept, raise acetylcholine.  Talk with your pharmacist to determine if something OTC (for allergy, sleep, nausea, motion sickness, etc.) is safe for you to take with your other PD meds.

Q. What if you have PD or a parkinsonism and a co-morbid diagnosis, like ADHD?
A. I always ask about academic difficulties early on, which will point to a attention deficit disorder.  It often comes up on its own during the interview.  Longstanding difficulties with attention and executive function disorder factors into whether it is cognitive impairment related to PD or something else.  I can also change how we decide to manage it.  If someone is not already on a stimulant medication, perhaps we can add that if there’s attention deficit background.  If there isn’t an attention deficit background, we tend to look at medications that raise acetylcholine.

Q. After you complete the neuropsychological evaluation, do you typically have a follow up with your neurologist to create the treatment plan?
A. Yes, but don’t wait for the neurologist to call you.  There is unlikely to be follow up with your neurologist until your next regular appointment, unless you initiate it.  Even at the best medical centers with the most caring doctors you will have to call and ask for an appointment to discuss diagnosis and treatment plan.

Q. How to cope with slow thinking and response time during group discussions?
A. When you have PD you have slow movement, but you also have slower thinking.  It’s not that you can’t reason from A to B, it just takes a little longer.  When there are multiple people involved in a fast-moving conversation, it can be hard to keep up.  It is even more difficult if you have word recall or other expressive issues.  The best plan is to control the environment when you can.  Keep the group small and in a quiet location, especially if anyone has hearing loss.  Slow the conversation, direct questions to the person with PD, or invite them specifically to share their thoughts, and then give them time to form their response.

Q. Is that an example of a recommendation you would make after a neuropsychological evaluation?
A. Yes, because apathy is already an issue with PD.  We don’t want the work involved in participating in a conversation causes people to step back and not participate at all.  We know that once you step back the more likely you are to step back further and withdraw from social interaction altogether.  That is the opposite of what we’re trying to do in helping people live their best lives with Parkinson’s.

Q. Do you have a whole spreadsheet of suggestions or just a few takeaways?
A. Maybe I should start putting something like that together.  I have been tailoring recommendations to each individual’s situation, like those tips for how to manage social interaction when there’s slower response time.
A common theme that comes up is how long it takes to do everything.  You have to remember you are dealing with slowing of movement and thinking, so you need to allow more time for everything.  Allow more time to get out the door for an appointment, for example.  If you don’t and you are in a rush, you are more likely to become anxious and stressed, which sets the outing on a bad note. 

Very intelligent people will complain about this, but not make the connection that they should time themselves to see how much time it actually takes to get out the door, then start getting ready that much earlier for the next appointment.  They have just been allowing 20 minutes to get out the door for so long and I’m sure they still wish that was the case, but after a certain point with Parkinson’s, it just isn’t.

Another recommendation about medications and ‘off’ times is to adjust your schedule, so you are doing activities in your daily routine during your ‘on’ times.  This takes some creative thinking.  You can discuss with your neurologists about adjusting your medication schedule, so you are “on” when you want to do those activities, but I generally don’t recommend that be done because it takes a lot of time to figure out.  I am more likely to help people figure out an activity schedule that works around when you are taking your dopamine agonist, etc.  There are times when I will recommend reducing medications that have negative side-effects, like Amantadine or Seroquel.

Q. Can you separate if it is a visual or cognitive problem in your evaluations?
A. Yes.  We always ensure someone is wearing their glasses during the testing.  We are looking for certain types of phenomenon like being inattentive to one side of space or another or copying a figure in such a way that’s connected with something awry in a specific part of the brain (the back part or the frontal lobes), or whether we see disturbances of the ability to integrate various pieces of visual material.  People with poor vision are able to do them well, but people with neurological conditions behind the eye will have problems.  I’m guessing that question is related to a person looking for something when the object in question is right in front of them.  There are other things that are more than that when we begin to wonder if it is basic attention or vision.  Color discrimination ability is found to be an early sign of Parkinson’s.  Visual contrast thresholds, like being able to see well at dusk are a vision problem in PD, which may be an eye problem related to alphysynuclein in the retina.

Q. How do you help both the patient and care partner cope with a diagnosis of dementia?
A. Dementia is a big, scary, term.  There are many types of dementia.  Depending on the type it is, we can predict the course of the disease.  In Parkinson’s Disease Dementia the care partner will need assistance, especially when the primary care partner is a spouse.  One of Dr. Turner’s goals is to preserve the spousal relationship, without allowing the caregiver / care recipient roles to interfere with that.  Same thing with adult children and parent.  Having someone to do the caregiving helps that helps the people involved to maintain their original relationship.  Once resources are engaged, it can bring relief to both Px & CG.

Q. Have you had any people share that they started seeing a counselor or joined a support group, and that helped?
A. Yes, there’s research supporting the benefit of support groups.  It is a lifestyle choice that can slow disease progression.  They provide socialization and pro tips.  Sometimes, people will step away from support group because they don’t want to be the one in the group who is having increased difficulty.  Don’t do that!  The group is there to support you through the difficult times, and your experience is good for others to see and prepare for.  Your sharing which resources are helpful, and which are not is good because everyone in the group will get to the point where you are eventually.  They will support you now and appreciate the benefit of your experience later.