“What a Pain! Understanding and treating pain in Parkinson’s” – Webinar notes

In early May, the American Parkinson Disease Association (APDA) Northwest Chapter offered a webinar on understanding and treating pain in Parkinson’s disease (PD), featuring Dr. Pravin Khemani, a movement disorders specialist. He discussed causes of pain in PD, treating pain by optimizing treatment of PD, and treatment strategies for pain in PD from other causes.

Though the webinar focus was Parkinson’s Disease, all of the atypical parkinsonism disorders can include symptoms of pain as well.  So we are sharing the webinar notes here.

One resource mentioned in the webinar is the PQRST pain assessment scale. You can download a PDF version of the scale here.

The webinar was recorded and can be viewed for free here.

Lauren Stroshane with Stanford Parkinson’s Community Outreach viewed the webinar and shared her notes.


What a Pain! Understanding and treating pain in PD – Webinar notes
Presented by the American Parkinson’s Disease Association, Northwest Chapter
May 8, 2020
Summary by Lauren Stroshane, Stanford Parkinson’s Community Outreach

Dr. Pravin Khemani is a movement disorders specialist at Swedish Neuroscience Institute in Washington. His presentation covered causes of pain in PD, treating pain by optimizing treatment of PD, and treatment strategies for pain in PD from other causes.

What is pain?

“An unpleasant sensory and emotional experience associated with actual or potential tissue damage, or described in terms of such damage.”

– International Association for the Study of Pain, 1979/2011

The experience of pain is contextual; the context for this presentation is PD, which is common but remains under-treated. Pain in those with PD is typically chronic (long-term), recurrent, and/or intermittent. Dr. Khemani’s presentation did not address acute or sudden pain, such as headache, chest pain, abdominal pain, eye pain, throat pain, etc. as these are not typical of PD and are common in the general population.

Most people are familiar with some of the non-motor symptoms associated with PD: sleep disorders, cognitive changes, mood disorders, and autonomic dysfunction are widely known. Pain should be included as another non-motor symptom of PD.

Why is pain so common in PD?

Chronic, recurrent pain is experienced by 60 to 70 percent of individuals with PD. Studies show that dysfunction in the dopamine circuits and pain pathways in the brain often degenerate in PD, leading to a higher incidence in PD. There is also a higher rate of musculoskeletal issues in PD that can also cause pain, which tend to be under-treated.

Pain seems to be felt differently in PD. There seems to be a lower threshold for feeling pain in those with PD, as well as altered pain sensation.

Dr. Khemani classified pain in PD into two categories, which will be discussed further:

  1. Pain from PD and its treatment
  2. Pain from other causes

There are many different techniques for classifying or attempting to quantify pain, but it is an inherently subjective experience and there is no way to objectively “measure” someone’s pain. The speaker finds it helpful to use the “PQRST” assessment:

  • Precipitating (and relieving) factors:  What makes the pain worse? What makes it better?
  • Quality:  How would you describe the pain? What does it feel like? [Examples: dull, achy, throbbing, sharp, electric shock-like, burning, tingling, icy]
  • Radiation:  Is the pain in one place or does it move around the body?
  • Site & severity:  Where is the pain? On a scale of 0-10, how do you rate the pain?
  • Timing & treatment:  When did the pain start? How often does it occur – constant or intermittent? Any relation to timing of PD medications, such as during “on” or “off” states? Are you getting treated for the pain?

The type of pain can help a healthcare provider help to differentiate possible causes and treatments. For instance, nerve pain often feels like sharp, shooting, or tingly pain, whereas muscle pain tends to be a dull, deep ache. These pain types may require different modes of management.

For those with PD, it is essential to determine if there is any relationship between the timing of the pain and the PD medications.

Pain from PD and its treatment

Pain may be due to under-treatment of PD symptoms, or from motor fluctuations. A low-dopamine state can cause substantial discomfort. Pain can sometimes be the first sign of PD, even before motor symptoms appear, but is often unrecognized because it is so common from other causes as well.

In studies, individuals with PD have described their pain as “electrical discharge,” “throbbing,” “hot and cold,” and “generalized” body pain. The pain is highly variable in perception and location, though it is usually worse on the side of the body that is more affected by motor symptoms.

How to correct pain from under-treatment? Simple: optimize dopamine treatment to improve the motor symptoms! This improves pain in about 48 percent of cases. If pain persists despite an increase in dopamine, then standard pain medications (analgesics) like ibuprofen or Tylenol are effective in 78 percent of cases.

Dystonia is abnormal, sometimes painful, muscular contraction. Those with PD sometimes experience dystonia in the hands or feet, either in the on-state or off-state. Dystonia in the feet can cause the foot to rotate, or the toes may curl; this is often painful and may make it difficult to walk safely. Hand dystonia can cause hands to curl or rotate as well.

Dyskinesias are abnormal movements that tend to be mobile, dynamic, and typically triggered by dopaminergic medication. They are not typically painful and may not even be bothersome, though in cases of severe neck or head dyskinesias, pain may occur. Dyskinesias may happen when medication is kicking in, wearing off, or reaching its peak.

The concept of a therapeutic window refers to the range of medication dosage in which a person with PD gets enough medication to feel “on,” but not so much medication that they are over-medicated and experience dyskinesias or other unpleasant side effects.

As PD progresses, the therapeutic window gets narrower: it is harder to get the balance of medication just right. Medication may wear off earlier, necessitating more frequent dosing, and may take longer to kick in. Dyskinesias may become more common. The period of getting a good “on” state shrinks, and the individual experiences longer “off” times when medication is kicking in. For those who have “off” dystonia, the periods of uncomfortable dystonia lengthen.

Treatment of motor and pain fluctuations

The first step is optimization of PD treatments: the goal is to spend more time in the “on” state without dyskinesias and less time in the “off” state.

  1. Multimedication treatment: Adding other medications rather than solely increasing the dose of levodopa is the most effective approach.
  2. Surgical treatment: Options such as Deep Brain Stimulation (DBS) or a levodopa intestinal pump may work well for some patients to reduce fluctuations.
  3. Customize for each person: Everyone is different; needs and symptoms also change over time as the disease progresses.

One technique for optimizing PD medications is fractionation: taking smaller doses more frequently. However, this significantly increases “pill burden” – the number of pills an individual has to keep track of each day – and the likelihood of mistakes or missed doses.

There are some medications that provide longer “on” time with reduced likelihood of dyskinesias.

Rytary is a newer formulation of carbidopa-levodopa that combines short-acting and long-acting levodopa into one pill. For some patients, it can replace short-acting carbidopa-levodopa (Sinemet) with fewer doses and pills per day.

Another recent option is the Inbrija inhaler, which is a version of levodopa that can be inhaled. It is intended for people with occasional wearing off and usually kicks in within 10 to 30 minutes. One advantage for those with chronic constipation or other gastrointestinal issues is that Inbrija bypasses the gut.

Other medications are frequently used in combination together. By taking smaller doses of each drug, individuals can often avoid the side effects associated with a larger dose of one. Common medication combinations include:

  • Carbidopa-levodopa, such as Sinemet or Rytary
  • Dopamine agonists (in those under the age of 60, due to risk of side effects), such as pramipexole (Mirapex)
  • COMT inhibitors, such as entacapone (Comtan)
  • Monoamine oxidase inhibitors (MAOIs), such as rasagiline (Azilect)
  • Amantadine

Dystonia does not always respond to dopaminergic medications; those with painful muscular contractions may not experience relief even when their PD medications are optimized. In those cases, injected botulinum toxin (Botox) can provide substantial relief by paralyzing or weakening the dystonic muscles with small injections that are repeated every three months.

Alternatively, other oral medications such as clonazepam or trihexyphenidyl may be useful for “refractory” dystonia that does not respond to PD medications; these drugs carry risks of side effects and are not recommended for everybody.

Deep Brain Stimulation (DBS) has been a treatment for the motor symptoms of PD for twenty years, but is increasingly being explored for other diagnoses, including pain and depression. By implanting the stimulators in different areas or “targets” within the brain, the stimulation may provide therapy for these other disorders.

Over time, pain from PD will change and evolve, so DBS would likely have to be used in conjunction with other pain management modalities, not by itself indefinitely. Currently, DBS is not recommended solely for the treatment of pain that is associated with PD.

Other types of pain associated with PD

Central pain:

  • Variable description, often electric, achy, generalized body discomfort
  • Often treated with analgesics like Tylenol, muscle relaxants, gabapentin, tricyclic antidepressants, duloxetine, or pregabalin


  • A state of inner restlessness that makes it impossible to sit still
  • Treated by optimizing PD medications

Restless leg syndrome (RLS):

  • “Creepy-crawly,” “tingly,” burning, aching, or throbbing in the legs that occurs with rest and is relieved by moving the legs
  • Can cause severe sleep disturbance
  • Treated with pregabalin, gabapentin, pramipexole, rotigotine, ropinirole, opiates, and other medications

Pain and discomfort from other causes

It can be quite challenging to tease apart the true causes of pain, and determine whether they are directly related to PD or due to some other cause. A team approach is often necessary, and may include:

  • General practitioner
  • Rehabilitation specialist
  • Rheumatologist
  • Pain specialist
  • Orthopedist
  • Neurosurgeon

Musculoskeletal(MSK) disorders are very common in PD, often affecting the neck, low back, joints, and limbs. This type of pain is often described as dull, deep ache, sharp pain with movement, cramping, throbbing, or “Charlie horses.” Causes of MSK pain include past injury; wear-and-tear; inflammation of the muscles, ligaments, and connective tissues; and osteoporosis that can lead to fractures. Frozen shoulder, arthritis, scoliosis, joint and spine deformities, stooped neck, and foot problems are all common MSK disorders. Neurologists typically do not treat these kinds of pain, hence the need for a team approach. Imaging with x-rays or MRI may be helpful for diagnosis.

Regular stretching is essential for all individuals, particularly in those with PD. Medications such as analgesics, steroids, and anti-inflammatories may be used; in some cases, surgery may be necessary. Rehabilitation in the form of physical or occupational therapy can be highly beneficial.

Neuropathic pain is caused by damage to the nerves, and is usually described differently than MSK pain: tingling, numbness, burning, “pins and needles,” and “shock-like” are all common descriptors for neuropathic pain.

When nerve pain occurs in the hands and feet, typical causes are neuropathy, diabetes, or deficiencies of vitamin B-12 or folate. Radiating, often asymmetric pain may occur in the shoulder, arm, back, or legs. Nerve pain may be due to radiculopathy (“pinched nerves” at the root of the nerve) or neuropathy (damage to the nerve in the periphery, far from the root).

A neurologist or a general practitioner can treat neuropathic pain. Depending on the location of the pain, an MRI of the back or neck may rule out other potential issues. Blood tests will determine if any vitamin deficiency is present; blood sugar control is also important, if diabetes is present. Rehabilitation therapy such as physical therapy is often recommended. Oral or topical medications are often helpful, and surgery may be necessary in some cases, depending on the cause of the neuropathic pain.

Some conditions can actually accentuate pain if they are present at the same time, so it is important to recognize and try to address these conditions if they exist. Depression, stress, and anxiety go hand in hand with pain, so it is essential to ask about mood when evaluating pain. Treating the pain without treating the concurrent mood disorder will not be effective. Lack of exercise and stretching is another major contributor to pain that can be addressed. Poor quality sleep, constipation, and low blood pressure (BP) are all issues that worsen the experience of pain significantly as well. Low BP results in decreased blood perfusion to muscles and nerves, which can worsen pain.

Marijuana for pain in PD?

We do not know the effects of the chemical components of marijuana – THC and CBD – in the brains of those with PD. Because of the lack of research in this area, Dr. Khemani does not prescribe marijuana to his patients, even though it is legal in the state where he practices.

If someone has severe pain from another cause, such as cancer, then a referral to a pain physician is appropriate and may sometimes result in recommendation for a trial of marijuana.

Main takeaways:

  • There are myriad causes of pain in PD.
  • The pain evaluation questions “PQRST” can help to identify the cause of the pain.
  • Optimization of PD treatment for both motor and non-motor symptoms is essential.
  • Multidisciplinary treatment for non-PD causes of pain is necessary too.

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Question & Answer Session

Q: Regarding DBS, is there an upper age limit?

A: No, there isn’t; what matters is your “physiological” age rather than chronological age: how healthy you are in general.

Q: Regarding Pisa syndrome and “Charlie Chaplin” gait – why does PD cause these?

A: There are two main postural changes that can occur in PD:

  1. Mechanical bend in the spine, similar to scoliosis; this is not only specific to PD and cannot be fixed, except with surgery
  2. Camptocormia, also called Pisa syndrome, in which there is a significant forward or sideward bend in the spine due to contractions of muscles

Camptocormia falls under the category of dystonia. It can occur gradually over time and can be quite problematic for some people. Sometimes it can improve with sufficient PD treatment. Other times, it can present as a dyskinetic dystonia due to over-treatment with dopamine. One way to differentiate camptocormia from scoliosis is the ability to lay flat on the bed, which isn’t possible in mechanical issues like scoliosis but is usually possible with camptocormia

Botox isn’t very effective but is sometimes used; the muscles are too deep to be very accurate with the injections. DBS may be helpful in some cases.

Q: Regarding non-traditional, non-pharmacological approaches to pain, do you think these are helpful? (i.e. acupuncture or yoga)

A: It entirely depends on the patient; everyone is wired differently. He recommends seeing a physical or occupational therapist to evaluate the patient to figure out where the deformity or issue is coming from. Once you have done this, and are cleared, then you could consider exercises such as yoga. It is ideally best to work with someone who knows that you have PD and has some understanding of the disease. Acupuncture suggests some benefit for those with PD, though very small sample sizes in these studies. The placebo effect is very real so it can be hard to draw any clear conclusions from many of the studies looking at integrative or complementary medicine.

As long as there is no interaction with the existing PD meds or exacerbation of the existing problem, Dr. Khemani is all for trying complementary medical approaches.

Q: Are there any vitamins or nutritional supplements that can be helpful for pain?

A: Great question! We talked about osteoporosis, which is serious bone loss that can lead to fractures; osteopenia is lower bone density that can eventually become osteoporosis. People with PD are at higher risk of developing both, and are often deficient in vitamin D and calcium, important elements in bone health. Falling and stumbling – experienced by many with PD – can lead to broken bones in someone with osteopenia or osteoporosis, rather than just a minor bruise.

However, be cautious not to take excessive amounts of vitamin D, as it is fat-soluble and can build up to unhealthy levels in the body if taken in excess. Calcium can cause constipation if over-dosed as well. So, if you supplement either calcium or vitamin D, make sure you don’t exceed the recommended daily dose on the bottle.

Vitamin B-12 and folate, as mentioned before, are important for treating neuropathic pain that is related to vitamin B-12 deficiency.

People sometimes use magnesium supplements to mitigate pain. It is also used to alleviate constipation, which is one of the most-neglected health issues in those with PD: going several days without a bowel movement. For someone with back pain, constipation can significantly exacerbate the pain, partly due to internal pressure, and partly from straining to have a bowel movement. Straining can even cause a slipped disc. Everyone should be taking measures to encourage a daily bowel movement; talk to your primary care doctor if you aren’t sure where to start.

Q: Are people with PD more prone to back pain than the general populace?

A: A variety of things can cause back pain. The most common cause in the general population is simply aging and degeneration. In PD, back pain is especially concerning because staying active and moving around is so important in this disease. We don’t want Dr. Khemani often refers his patients to the Spine Clinic at his medical center to see if rehab or other therapies may be useful, or in some cases, if surgery is warranted.

Q: Are people with PD more prone to headaches? Is it related to PD?

A: People in general are prone to headaches; we don’t have any reason currently to think they are more common in PD. The treatment would depend on what kind of headaches you are having. Fellowships to become a headache specialist are usually two years long, so there is a lot to learn about the management of headaches and it is a complex field.

There is no such thing as a PD headache, per se; if you are bothered by headaches, start with your primary care doctor. For those who experience more serious headaches such as migraines or cluster headaches, then seeing a headache specialist is likely in order.

Q: What is the best way for me, as a patient, to track my pain symptoms and provide useful information to my movement disorders specialist?

A: The “PQRST” mentioned above is absolutely key: this is what providers want to know about your pain. This tool will help you to express what you are experiencing to your provider. There are also pain tracker apps available.

A downloadable PDF mentioned at the beginning of this summary is also available here.

Being an advocate for your loved one with LBD and other disorders – UCSF webinar

Editor’s Note: Although the focus of this webinar was advocacy for those with Lewy body dementia, this webinar applies to those who have loved ones with any neurological disorder (not just LBD and not just dementias). This is one of the most comprehensive webinars I’ve ever heard. This should be required reading for every caregiver!

In April 2020, the UCSF Memory and Aging Center (MAC) hosted a webinar on advocacy in healthcare and community settings — the fourth in its ongoing series on Lewy body dementia (LBD).  The two wonderful speakers were Sarah Dulaney, RN, clinical nurse specialist with UCSF, and Helen Medsger, long-time Brain Support Network LBD support group member.  Helen cared for her sister with LBD.  They discussed the importance of establishing a daily routine and preventing falls, plus provided activity suggestions and tips for communication.

Thanks to Helen Medsger for alerting us to the MAC’s LBD webinar series.  You can find the list of the full series here:

UCSF Lewy Body Dementia Caregiver Webinar Series

The April 28th webinar featuring Sarah Dulaney and Helen Medsger was recorded and is available on YouTube:


The MAC is asking that everyone who views the recorded webinar provide feedback through a brief survey here:


This webinar is worth listening to and/or reading the notes (see below)!

If you missed the first three webinars in this series, check out some notes here:

What is Lewy body dementia?

Behavior and mood symptoms in Lewy body dementia

Managing daily activities and fall prevention

For further information on Lewy body dementia, look through Brain Support Network’s list of resources:

Brain Support Network’s Top Resources on LBD

Lauren Stroshane, with Stanford Parkinson’s Community Outreach, listened to the webinar and shared her notes.  See below.


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Advocacy in healthcare and community settings – Webinar notes
Presented by the UCSF Memory and Aging Center
April 28, 2020
Summary by Lauren Stroshane, Stanford Parkinson’s Community Outreach

“As family caregivers, we often play many roles, including scheduler, financial manager, housecleaner, encourager, nurse, navigator, nurturer, and more. Perhaps the most important role, though, is advocate, as we ensure the best life possible for our family and friends when they are vulnerable.”

– Amy Goyer, AARP’s Family and Caregiving Expert, 2016

Whether you know it or not, you are already a healthcare advocate in many ways. Lewy body dementia (LBD) is a progressive neuro-degenerative illness that will require a high level of care over time.

A sample dementia caregiving trajectory, from the National Academy of Sciences (2016):

  1. Awareness – Checking in and monitoring. Light errands. Communication with medical providers. Advance care planning (medical & legal).
  2. Unfolding responsibility – Monitoring symptoms and medications. Managing finances and household tasks. Hiring, training, and managing caregivers. Coordinating medical care. Providing emotional support.
  3. Increasing care demands – Monitoring safety risks and behavior. Symptom monitoring and management. Personal care. Acute care transitions. Insurance and public benefits.
  4. End of life care – Communication of the person’s values and preferences. Advocacy and surrogate decision making. Comfort and sensory stimulation. Personal care.

What are some tasks/responsibilities of LBD caregivers?

  •     Medications, appointments, diet, and lifestyle
  •     Monitoring, responding, and alerting
  •     Learning & sharing information
  •     Communication & documentation
  •     Record keeping, insurance, finances, & public benefits
  •     Negotiation, advocacy, & surrogate decision-making

The volume of responsibilities can be overwhelming, but you don’t have to go it alone. Sit down and talk with loved ones to see what responsibilities can be shared or delegated.

Carrying the burden of caregiving alone can be dangerous for your health, with up to a 63% higher mortality rate.  Respite care, such as home care, a day program, housekeeping, or meal delivery can be very beneficial, both for you and for the person with LBD.

Other sources of help might be family, friends, or a neighbor; a private care manager or fiduciary; a publicly appointed conservator or guardian; or a county case manager if the individual is low-income. When looking to hire a professional, seek recommendations from a trusted source, such as the local chapter of an advocacy group such as the Alzheimer’s Association, members of a support group, a senior program, or your attorney.

When is a publicly-appointed conservator required? When the individual can no longer take care of themselves and does not have a family member or close friend to act on their behalf.

Tips & strategies for healthcare advocacy

Each of these are explored in depth throughout the rest of the summary:

  1. Compile & organize critical documents and information. 
  2. Educate yourself about LBD.
  3. Understand the person’s needs, preferences, goals, and values to understand what is important to them.
  4. Build a “village of care” team.

Compile & organize critical documents and information

A three-ring binder can be portable and easy to update, or virtual options as preferred. Provide copies for others who serve a primary caregiver role for the individual.

  • Medical information for the patient
    • Medical history, current diagnoses
    • Current list of medications (name, reason, dose, route, schedule)
    • List of allergies or contraindicated medications
  • Emergency contacts (name, email, phone #)
  • Patient’s ID, insurance card, and medical record #
  • Names and contact information for the patient’s medical providers
  • Legal documents
  • HIPAA Release of Information form (one for each health setting)
    • Every health delivery system will have their own form and requires it to be signed by the individual, if they are able, before they will release health information to you.
  • Advance Healthcare Directive or Durable Power of Attorney for Healthcare: a legal document that allows an individual to spell out their preferences for life-saving medical interventions and end of life care, ahead of time, and designates an individual who is empowered to make healthcare decisions on their behalf, if necessary.
    • Prepare for Your Care
    • This requires that you speak with the loved one about their wishes while they are still able to consider such decisions.
  • POLST (Physician’s Order for Life Sustaining Treatment) tells emergency professionals what to do in a crisis when the patient cannot speak for themselves.
  • Durable Power of Attorney for Finances: a legal document that establishes who is permitted to make financial decisions on behalf of the individual.
    • It is important to consult with an attorney while the individual still has mental capacity, to ensure this is set up correctly and that there is no concern about fraud or financial abuse.
    • The Consumer Financial Protection Bureau offers a helpful guide on managing someone else’s money.
  • Representative Payee (Social Security): if your loved one is eligible for Social Security, visit the Social Security Administration website to learn about how you can manage these benefits on behalf of your loved one.
  • VA Fiduciary (Veteran’s benefits): if your loved one is eligible for Veteran’s benefits, read this handout from the Veterans Affairs website to learn about how you can manage these benefits on behalf of your loved one.

Educate yourself about Lewy body dementia

It’s important to understand the common symptoms and risks associated with LBD, to prepare yourself to be an effective and empathetic caregiver.

Those with LBD commonly experience:

  • Cognitive and functional decline
  • Lack of safety awareness
  • Mobility problems and fall risks
  • Swallowing problems and weight loss
  • Mood and behavioral symptoms
  • Sleep disruption
  • Dysfunction of the autonomic systems in the body, affecting urination, digestion, and blood pressure regulation.

How to accomplish all of this?

Amassing all of this documentation and knowledge can feel like an insurmountable task at first! Prioritize needs and goals to help yourself determine what to tackle first:

  • Physical/medical
  • Emotional/psychological
  • Social/familial
  • Legal/financial

Most importantly, learn to ask for (and accept) help from others! Whether family, friends, or professionals, reach out to others and try to build a “village of care” team to help support you and your loved one.

Members of a village of care team may include:

  •     Primary care provider
  •     Specialist provider, such as a movement disorders specialist
  •     Friends, family, neighbors
  •     Therapist, support group
  •     Respite care providers
  •     Elder law attorney, financial planner, or case manager

What to expect in different medical settings?

Let’s say you have all your documents organized and your “village of care” team in place. Next it’s helpful to know what to expect at different levels of medical care for your loved one. The second half of the webinar focused on common care settings and what to expect at each one, in terms of the team you will be communicating with, the types of help available, and the best ways to advocate for your loved one.

Care in ambulatory clinics

Ambulatory clinics include doctors’ offices, urgent care clinics, outpatient surgery settings, dialysis units, and many others. The team will likely include a clinic coordinator or medical assistant, a social worker, triage nurse, and provider (physician, advanced practice nurse, or physician assistant).

Types of help that are available in a clinic setting typically include:

  • Triage urgent care needs
  •  Diagnostic and routine follow-up appointments
  •  Medication refills and prior authorization
  •  Help with forms
  •  Referrals for specialty care, home health, outpatient rehab, and durable medical equipment such as a walker or wheelchair
  •  Information and resources

Consider the best way to communicate

Who should you be communicating with when a need arises? In many clinics, a care coordinator or nurse will confer with you first, to determine if input from the doctor is needed. Find out how the communication workflow operates in this clinic – how do they prefer that you contact the office? Does the doctor or medical group have a phone app or online messaging? An online portal or secure email? Or are they “old school” and prefer phone or fax?

  •  Electronic medical record messaging
  •  Secure email
  •  Phone
  •  Fax
  •  Scheduled phone or video visit
  •  Routine or urgent in-person visit
  •  Quarterly care planning meetings (at long-term care facilities)

How to get the most out of visits with providers

  1. Prepare and prioritize 3-4 concerns to bring up during the visit. More may not be practical to address in one appointment. What is most important? If you have kept notes since the last visit about how your loved one is doing, that’s great! If not, sit down a day or two before the appointment and write down some bullet points about how they’ve been, any changes and concerns.
  2.  Stay focused – describe symptoms or changes briefly, including the most important information such as when it started, how often and when it occurs, and if it is improving or worsening.
  3. Be honest with the care provider, even if it is uncomfortable. If you are truly unable to speak openly in front of your loved one, send a message ahead of time to the provider so they can bring it up in person, if appropriate.
  4. Advocate if you feel your concerns are not being addressed.
  5. Accept that sometimes providers are not able to provide the answers you seek. If you feel your concerns are being ignored, it may be appropriate to seek a second opinion.

Learn what is covered by your insurance

To help avoid surprising or potentially devastating medical bills, it’s a good idea to know what your insurance covers as far as appointments, procedures, and medications. Contact your insurance company to review your coverage, or check what benefits you are eligible for on government and insurance websites:

If you don’t have comprehensive drug coverage, the website www.GoodRx.com is a helpful resource to compare out-of-pocket drug prices among different pharmacies, and often provides coupons as well. 

Emergency room visits and hospitalizations

One of the largest challenges in caring for someone with LBD is when they require treatment in a hospital or emergency department. Providers you may interact with include:

  • Patient care assistant or nursing assistant
  • Shift nurse
  • Charge nurse
  • Rehabilitation therapist (speech, physical, or occupational therapy)
  • Discharge planner (typically a nurse case manager or social worker)
  • Attending physician

Since your loved one is likely injured or ill, if you are in a hospital setting, do your best to be prepared: have all your emergency information with you, have a list of their current medications with you, introduce yourself to the team, and do not be afraid to ask questions if you need clarification.

Types of care that are available:

  • Evaluation and treatment of severe symptoms, acute conditions, and serious injuries
  • Scheduled operations and procedures
  • Discharge plan
    • Follow-up care instructions
    • Follow-up care appointment
    • Medications and referrals
    • Home health
    • Skilled nursing facility

How does Medicare handle payment for a hospital admission?

Let’s say you came through the emergency room and your loved one was admitted to the hospital. Is Medicare going to reimburse the cost?

“Observation status” or “social admission” means Medicare will not cover a post-hospitalization stay in a skilled nursing facility.

To be eligible for skilled nursing coverage under Medicare, typically a 3-day hospitalization with an “admitting diagnosis” is required.

In a hypothetical scenario, your loved one with LBD has become really lethargic suddenly. They aren’t eating or taking their medications, and their regular doctor advises that you take them to the emergency department (ED). After you arrive in the ED, the doctor there orders testing to see if there is an underlying infection, such as a urinary tract infection (UTI), that would need treatment.

What’s tricky with LBD is that symptom fluctuation is a core feature of the disease. This could be an instance of that. In our hypothetical scenario, the test results in the hospital don’t indicate any infection, and an LBD fluctuation seems most likely.

As the day goes on, your loved one does not improve, however, and they are admitted to the hospital for further monitoring. The attending physician feels that they might benefit from staying in a skilled nursing facility (SNF) for a period of time to help bring them back to their previous baseline.

At this point, it is very important to know their original hospital admission status. Were they there under observation, or social admission status? If so, Medicare will NOT cover the skilled nursing stay afterward. If they had an admitting diagnosis, such as a UTI or sepsis, and required 3 days of hospitalization or more, then typically Medicare will cover it.

It’s essential that you speak with the assigned discharge planner – who may be a case manager or social worker – and review the options before your loved one is discharged from the hospital.

As you get closer to discharge, if you feel like their condition has not improved and warrants more care than you or the rest of the existing care team can provide, then you may have the right to challenge the discharge as unsafe. Before taking this step, however, it’s important to know your rights, and carefully consider whether this is truly warranted.

The California Advocates for Nursing Home Reform provides a factsheet with useful information about this process.

Long-term care settings

Heading into this care setting, it’s important to know whether you expect this to be a short-term rehab stay for or a long-term “custodial” stay. This will determine if the stay is covered under Medicare or Medicaid, or if you will be responsible for payment. To avoid surprises, make sure to discuss all these options carefully with the facility’s billing office, at the beginning of placement.

Short-term rehab stay:
– Full coverage for up to 20 days, then partial coverage by Medicare for 80 more days
– Requires the ability to make progress towards rehab goals

“Custodial” long-term care:
– Private pay
– Medicaid, if eligible

Team members that you may interact with include:

  • Nursing assistant
  • Shift nurse
  • Activities coordinator
  • Rehabilitation therapist (PT, OT, ST)
  • Social worker
  • Director of nursing
  • Provider (physician, advanced practice nurse, or physician assistant)
  • Administrator

How to advocate in long-term care settings?

If your loved one is placed in a facility – whether for a short-term rehab stay or for long-term care – and you need to advocate for their safety and well-being, it’s important to familiarize yourself with residents’ rights (sometimes called patients’ rights). By law, facilities must post these rights on the wall in a visible place; it’s a good idea to locate and read these documents. You can take a photo to read in more detail later, if need be.

Recognize workforce challenges the facility staff are facing. What is the staff-to-patient ratio? Do they meet or exceed state regulations? Maybe the staff were unable to meet your loved one’s needs because they were busy taking care of many residents. Sometimes it is necessary to let a few things go or lower some expectations, but never at the risk of your loved one’s safety.

Prioritize needs and communicate your concerns concisely to the staff. Open the lines of communication and offer to work with staff to address any issues. Participate in quarterly care planning meetings to touch base with the care team. If necessary, you may need to escalate concerns that are related to safety and well-being, if they are not being addressed.

Contact the local Long Term Care Ombudsmen, a trained patients’ rights advocate. Their phone number is also required to be posted visibly in the facility.

Home health care

If the person you are caring for is able to stay at home, but needs additional medical care in that setting, this is called home health care. Examples of this type of care include:

  • Skilled nursing (wound care, infusions, medication management, teaching)
  • Rehabilitation (PT, OT, ST)
  • Medical social services
  • Durable medical equipment (DME), such as a walker, wheelchair, or brace
  • Limited home care assistance (such as toileting or bathing)

Medicare coverage typically requires a referral from a provider and ongoing oversight. The individual must also be homebound. Coverage is typically intermittent, such as fewer than 7 days a week and less than 8 hours a day, over a period of 21 days. There is sometimes a 20% copay.

Palliative or Hospice care

While palliative care has historically been associated with the end stages of life, it can actually provide assistance at almost any stage of illness. The goal of palliative care is to reduce suffering and improve quality of life. Hospice care is appropriate for advanced or terminal illness, when the person likely has less than six months to live. In some cases, patients go on hospice and survive longer than anticipated; they then “retire” from hospice but can go back on it if their condition worsens again. The fluctuations experienced by dementia patients means this is common in those with LBD.

Hospice services are covered by Medicare; palliative care typically is not. Availability of palliative care varies greatly by location and health plan coverage. The support services for patients and caregivers can be greatly beneficial. Check with the primary care provider for more guidance.

A palliative care or hospice team typically includes:

  • Home health aide
  • Social worker
  • Nurse
  • Chaplain
  • Attending provider (may be a primary care doctor or a hospice/palliative care doctor)

Types of care provided:

  • Various palliative care programs
  • Medications
  • DME such as a hospital bed
  • Help with bathing
  • Incontinence supplies
  • 24/7 on-call triage nurse
  • Weekly in-home nurse visits
  • Ancillary services
  • Limited respite (varies)

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Advocacy in community care settings

In the United States, medical care and social care are considered quite separate, more so than in some other countries. Legal and financial assistance was mentioned earlier in the presentation, but falls under this category as well, and is essential to consider, particularly as the disease progresses and the costs of care may or may not be covered entirely. An attorney with expertise in elder law can be very helpful for this process.

The Community Resource Finder, funded by the Alzheimer’s Association and AARP, can be helpful for finding local options.

Psychosocial caregiving is a bigger responsibility than we often give it credit for. It often arises early in the disease and is an important role that the caregiver plays, in helping the individual but also the family and broader community to understand their changing needs and abilities.

  •     Balancing activity and rest
  •     Maintaining connections and managing conflict
  •     Informing and preparing
  •     Planning and scheduling social events
  •     Adapting communication
  •     Simplifying social engagements

Care management services

If you are feeling (understandably) overwhelmed by all these responsibilities, there is often help available in the form of care needs assessments and recommendation, coordination of care and services, and assistance with home care arrangements and placement.

There are private pay options, for those who can afford it. Fortunately, California also has subsidized programs:

The Family Caregiver Alliance, which is part of the National Center on Caregiving, provides many resources such as a list of nonprofit Caregiver Resource Centers in California.

Medicaid waiver county-based case management programs.

Program for All-inclusive Care for the Elderly (PACE).

Other community support services

  • Housekeeping
  • Meal or grocery delivery
  • Transportation – Paratransit, ride-sharing apps, specialized ride-share services such as Go Go Grandparent
  • Money management
  • Home modification programs – these are sometimes available through your local county

Congregate respite programs

The speakers encourage caregivers to consider these types of programs for their loved one with LBD earlier in the illness, not later.

  • Senior centers
    • Free or low cost
    • Meals and activities
    • May not be appropriate for those with cognitive impairment
  • Social day programs
    • Private pay
    • Typically includes transportation, meals, and activities
    • Medication administration
  • Adult day health centers
    • Private pay and Medicaid
    • Typically includes transportation, meals, and activities
    • Medication administration
    • Rehabilitation services (PT, OT, ST)
    • Nursing and social work services

To find these kinds of resources in your own community, you can search the following websites to see what is located near you:

In-home care

Not to be confused with home health care, in-home care refers to general assistance in the home and is not covered by Medicare. This includes help such as companion care, light housekeeping, supervision, and personal care such as toileting, bathing, and dressing.

The Family Caregiver Alliance has a useful article on hiring in-home help.

Those who can afford to do so often use a home care agency, which handles background checks, liability insurance, staff training, and scheduling.

A private caregiver is typically cheaper, but carries potentially higher risk (such as taxes, liability, and labor laws).

A live-in caregiver typically provides services in exchange for reduced rent; this type of arrangement can sometimes be subject to liability and labor laws.

Medicaid community-based in-home care waiver programs vary by state:

CA Department of Social Services In-Home Supportive Services Program.

Care in an assisted living facility

These types of facilities are for individuals who require less medical intervention than in skilled nursing or a nursing home. Instead, they provide the types of assistance that in-home care might help with: meals, help with medications, personal care, activities, and sometimes dementia care.

  • Board and care home – typically 6-8 residents, often lower-cost options
  • Assisted living facility – can have hundreds of residents, varying levels of assistance
  • Memory care facility

Some retirement communities might provide all levels of care, from assisted living to skilled nursing. The cost of these facilities varies greatly. The Family Caregiver Alliance has a helpful web page with tip sheets comparing the different residential care options.

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Other ways to advocate

Participation in research can be deeply rewarding for those with LBD. You can learn more about what clinical trials are currently recruiting at the national database of clinical trials.

There are many different beliefs around organ and brain donation. For some, brain donation can be a rewarding way to feel they are leaving a legacy and helping to further our understanding of neurodegenerative illness. Brain Support Network is a nonprofit organization that facilitates brain donations, educates families, and organizes caregiver support groups.

Consider volunteering with an advocacy organization such as the Lewy Body Dementia Association.

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Question & Answer Session

Q: In this time of Covid-19, how can we advocate for loved ones’ needs even if we may not be allowed to visit them in the hospital or facility? How can we make sure their needs are advocated for remotely?

A: The possibilities will be largely dependent on the facility and staff. It’s generally a matter of calling the facility and hopefully finding a staff member who is willing and able to facilitate contact (via phone or a video call) with the resident. This might be a social worker, an activities coordinator, or the director of nursing. They have heard of some families purchasing an Amazon Echo Show device for their loved one with LBD, which allows the family to make video calls easily. Scheduling a time each day or week with facility staff to check in with the individual and/or the staff can be very helpful, both for the staff to make time regularly and for the family to get regular updates. Sometimes calling at mealtimes may be beneficial.

Others have organized “window visits” to arrange for a staff member to help the resident to a designated window while the family waves to them from outside. Finding ways to support the staff, who may be under tremendous stress – such as helping coordinate access to personal protective equipment (PPE) that may be in short supply, or arranging meals to be delivered for staff members – may help the staff have the bandwidth to assist with resident contacts as well.

For those who end up in the hospital, the inability to visit or be present for someone with LBD can be extremely challenging. The change of environment and routine, the potential for developing delirium, and the lack of familiar faces can be especially difficult for LBD patients. The hospital’s supply of PPE is likely what will determine their ability to permit visitors.

Q: I am having a hard time finding assisted living facilities whose staff are experienced with LBD. Do you have any tips about how to educate the staff about working with this patient population?

A: Helen has taught classes to student nursing assistants before, regarding this exact topic. She would bring educational materials to pass around, such as booklets and leaflets, and recommends the Lewy Body Dementia Association (LBDA) website as a good resource. Those on the front lines will be better able to care for someone with LBD if they have the information they need. Offer to facilitate instruction if need be. Also keep in mind that the staff needs to know about “your” person specifically; LBD can present very differently among different people.

In facilities with very large numbers of patients, sometimes it can be difficult for staff not to think of your loved one as “just another person.” You can put together a short bio of your loved one: where they grew up, what family they have, their interests and hobbies, to help humanize them so they are not just their diagnosis.

Q: What if the staff at the facility does not understand LBD? I have tried to give websites and pamphlets but staff were not receptive. There is also a lot of staff turnover, complicating these efforts. My family member has a lot of disruptive sleep behaviors and I would really like to help the staff understand; what can I do?

A: Be persistent; there is often turnover in the direct care staff; hopefully less so in the higher-level nursing staff or activities coordinators. Finding someone on the staff who can be a champion for you would be ideal. If someone can’t spend an hour on the phone with you, maybe you can catch them for 15 minutes here and there. Share information in small, digestible chunks. It’s not a straightforward process, particularly right now during the pandemic.

Try to call and establish a care plan; be proactive rather than waiting out an unsafe situation. Plan for the worst; if it’s a good day, then you’ve got it covered.

Sometimes having a letter from a physician stating that it’s okay to let someone sleep if they need it rather than waking them up for mealtimes, for instance, can release the facility from liability for that particular issue and allow them to tailor the care as needed.

Depending on where your loved one is at with their disease, hospice can also be a great advocate for helping to provide good care and keep them comfortable.

“Freezing of Gait: why and how?” – Lecture notes

A neurologist spoke on “freezing of gait” (FOG) at the early-April Insight 2020 conference. FOG occurs when an individual finds that his/her feet “stick” to the floor or shuffle forward in short, unbalanced steps, while they are trying to walk forward. FOG can make it difficult to get around and often precipitates falls. The lecture is a rather technical explanation of how FOG occurs. FOG is present in Parkinson’s Disease (PD) and all of the atypical parkinsonism disorders.

Insight 2020 was the largest online conference for people with PD, their caregivers, and those who work with the PD community. Lauren Stroshane from Stanford Parkinson’s Community Outreach attended the virtual conference and took notes on some of the talks that seemed most interesting. Copied below are her notes from a talk by neurologist Dr. Aasef Shaikh from the Cleveland Medical Center on the topic of FOG.


Freezing of gait: why and how?
Speaker: Dr. Aasef G. Shaikh, Assistant Professor of Neurology at Cleveland Medical Center
Insight into Parkinson’s Conference, April 2, 2020
Notes by Lauren Stroshane, Stanford Parkinson’s Community Outreach

Freezing of gait (FOG) occurs when an individual – most often, someone with Parkinson’s Disease (PD) – finds that their feet “stick” to the floor or shuffle forward in short, unbalanced steps, while they are trying to walk forward. Many with PD will experience some degree of FOG over the course of the illness; it can make it very difficult to get around, and often precipitates falls.

FOG is a context-dependent phenomenon: it doesn’t happen in every situation. Scenarios that commonly trigger FOG include:

  • Walking in a narrow hallway
  • Going in and out of a doorway or threshold where the flooring changes
  • Walking in a busy room with many people around, such as a grocery store

What is the common element in all these scenarios that leads to FOG in those with PD? It is not just a motor issue. Gait and balance in PD involve multiple systems. 

Action and perception are closely linked; if you perform a repetitive physical task and you perceive that you did it well, such as taking a step forward, then your brain interprets this as successful and repeats it. There seems to be a mismatch in PD between the perception of walking versus the action of walking. Postural changes and muscle rigidity often alter one’s center of gravity and ability to maintain normal balance; these also play into the likelihood of falls and freezing.

Visual and spatial processing difficulties are also common in PD and contribute to FOG and falls. If your brain is struggling to determine whether a dark shape at the end of the hall is a shadow, a table, or a dog, this can trigger freezing. Changes in depth perception, blurred vision, and double vision can occur in PD as well and are called binocular disparity. Tiny eye movements called saccades are normal for our regular visual processing; in PD, these saccades are often abnormal, making it more difficult for those with PD to scan their visual environment. Interestingly, those with Deep Brain Stimulation (DBS) implants seem to have improved eye movements compared with those who do not have DBS.

Putting all these factors together, as a person with PD is walking forward in their environment, impaired visuospatial processing and visual problems make it difficult to get a correct read on their surroundings, while motor issues and impaired ability to perceive their own movements make it difficult to know where in space their own body is. This mismatch seems to confuse the brain, leading to FOG as the brain struggles to figure out what to do.

“Neuropsychological symptoms of Parkinson’s disease” – lecture notes

A neuropsychologist spoke on neuropsychological symptoms of Parkinson’s Disease (PD) at the early-April Insight 2020 conference. Since these neuropsychological symptoms — cognitive impairment, attention, visuospatial processing, executive functioning, apathy, and disinhibition — have relevance for the atypical parkinsonism community, we are sharing the lecture notes here.

Insight 2020 was the largest online conference for people with PD, their caregivers, and those who work with the PD community. Lauren Stroshane from Stanford Parkinson’s Community Outreach attended the virtual conference and took notes on some of the talks that seemed most interesting. Copied below are her notes from a talk by Australian neuropsychologist Dr. Luke Smith.

This excerpt is worth highlighting as we see this same issue in the atypical parkinsonism conditions:

People with PD sometimes describe themselves as having a memory problem. Yet, in the speaker’s experience, many of those people who undergo cognitive testing are actually shown to have a learning problem, not a memory problem. Memory has 3 stages: learning (taking in new information), storage (like a computer; keeping the information), and remembering (retrieving the info when you need it).

This is a good excerpt too as lack of insight is very common in the atypical parkinsonism conditions, especially Lewy body dementia and progressive supranuclear palsy:

Executive functioning is best described as the most complicated aspects of our cognitive function: planning, anticipating the outcome of actions, problem-solving, controlling instinctive responses to stimuli, and having insight into one’s own condition. It is another aspect of cognition that can be impacted by PD. Sometimes the loved ones of those with PD may feel that the affected person is in denial of their condition – but it may just be a lack of insight due to the disease.


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Neuropsychological symptoms of Parkinson’s disease  
Speaker: Dr. Luke Smith, Clinical Neuropsychologist
Insight into Parkinson’s Conference, April 2, 2020
Notes by Lauren Stroshane, Stanford Parkinson’s Community Outreach

The speaker, Dr. Luke Smith, is a clinical neuropsychologist in Melbourne. He discussed changes in cognition, social cognition, behavior and personality that can occur in those with PD, as well as support options.

Dr. Smith sometimes finds it strange that PD is classified as a movement disorder, since the disease affects far more than just our movement. The basal ganglia, which is the area of the brain most affected by PD, was originally thought to be responsible only for movement. We now know that this part of the brain also greatly impacts how we think, feel, and behave. The frontal lobe and parietal lobes of the brain are also affected in PD; these areas impact “executive” or decision-making function (frontal lobe), and visual processing (parietal lobe).

Minor changes in thinking or memory are called mild cognitive impairment (MCI). This may show up on cognitive testing, but likely is not impacting the individual’s day-to-day life. Those with PD are at higher risk of having MCI.

Parkinson’s disease dementia (PDD) occurs if MCI has progressed into more severe problems in memory or thinking, impacting the person’s ability to perform normal functions like driving a car, managing finances, or cook a meal. Looking at the prevalence of these issues in PD longitudinally, most research suggests that, for those who have lived with PD for ten years or more, about half would probably meet criteria to be diagnosed with PDD.

Changes that can occur in thinking: 

The amount of time it takes for a person with PD to process information often increases. Keeping up with a fast conversation or a rapid-paced movie can become more difficult; it may feel like the world is moving faster around you. Changes in attention and concentration may also occur. Attention span is defined as how much information you can take in at one time; the average amount of information a normal adult can absorb is about 5-7 bits of information at one time without repetition of the information. For those with PD, it may be only 3 bits of information that they can take in at once. Divided attention – often called “multitasking – becomes more difficult for those with PD as well. For some people, working memory – the ability to keep multiple small amounts of new information in your mind at once – is affected as well, manifesting sometimes as difficulty with mental arithmetic.

Visuospatial processing tends to be affected in those with PD. This means the ability to understand visual stimuli. Those who have a dog know that their dominant sense is that of smell; dogs are highly driven by their noses. Similarly, most humans’ dominant sense is our sight. Our eyes take in the raw data and our brain makes sense of that data. For those with PD, the way they interpret that data is no longer working normally. This can manifest, for instance, in difficulty putting together IKEA furniture, or problems for those who make their living as architects, contractors, artists, designers, or others in highly visual fields.

People with PD sometimes describe themselves as having a memory problem. Yet, in the speaker’s experience, many of those people who undergo cognitive testing are actually shown to have a learning problem, not a memory problem.

Memory has 3 stages:

  1. Learning – taking in new information 
  2. Storage – like a computer, keeping the information
  3. Remembering – being able to retrieve that information when you need it

For those in early to moderate PD, often, their memory is fine. It may be that they aren’t taking in as much information to be encoded in their memory storage. When someone has a true memory problem, it is step 3 – remembering the information off the top of your head – that is the issue. For people with PD, receiving a prompt or hint can help recognize the memory, allowing them to retrieve it. This is called recognition memory, and is usually still quite strong in those with PD.

By contrast, Alzheimer’s disease (AD) is another common neurodegenerative disease that affects memory quite differently than PD. Those with AD suffer from deterioration of their long-term memory: who they are, where they live, who their family is. For those with PD, memory often becomes less efficient, but long-term memory remains intact.

Executive functioning is best described as the most complicated aspects of our cognitive function: planning, anticipating the outcome of actions, problem-solving, controlling instinctive responses to stimuli, and having insight into one’s own condition. It is another aspect of cognition that can be impacted by PD. Sometimes the loved ones of those with PD may feel that the affected person is in denial of their condition – but it may just be a lack of insight due to the disease.

Some of those with PD may have trouble recognizing certain facial expressions in others, particularly unhappy or angry expressions. This ability to recognize social cues is called social cognition. Figuring out an idea of why another person may be feeling a certain way is called theory of mind.

Additionally, those with PD may experience something called pseudobulbar affect – the tendency to show excessive emotion in response to outside stimuli, regardless of how they actually feel inside. An example may be crying for no reason, or laughing uncontrollably at inappropriate times.

Changes in behavior and personality can also occur in PD, since these aspects of oneself are controlled in the frontal lobes. Apathy is the most common change that happens in those with PD, and can be quite frustrating for caregivers or family who are trying to motivate the individual to do things they formerly enjoyed. Impulsivity, also called disinhibition, may start to do things without considering the consequences. An example may be rudely commenting on someone’s appearance, when in the past, they would never have done so. 

If you or a loved one are noticing some of these issues, the first thing to do is seek help with a medical professional.

What to do if you notice cognitive changes?

Neuropsychologists, like the speaker himself, are good at working with families to assess cognitive abilities and make recommendations and can administer a standard battery of tests, typically over 3-4 hours. But a primary care doctor or neurologist can also be a good place to start, likely with a cognitive screening test that might take only 20 minutes or so. Among the various cognitive tests out there, the Montreal Cognitive Assessment (MoCA) does a better job of screening for executive dysfunction and other issues specifically seen in PD than some of the other screening tests that may be available, such as the Mini-Mental State Exam (MMSE), which the speaker does not recommend in PD. Occupational therapists, speech therapists, and nurses can be helpful resources as well, for evaluating cognitive changes.

It’s important to consider where you are getting your information; internet searches will turn up lots of different websites that may or may not have accurate information. Instead, contact your local PD association, which will have up-to-date information and resources for these issues. 

There is some good news: In the last 5 years, we now have evidence that cognitive rehabilitation strategies can help when someone experiences memory or thinking issues. Cognitive rehabilitation involves learning and using new memory and thinking techniques and strategies. They do not necessarily improve cognition per se, but they do improve coping abilities and improve a person’s ability to function day-to-day.

How mood and cognition affect Parkinson’s – Webinar notes

In early March 2020, Parkinson Canada offered a webinar on mood and cognition in Parkinson’s disease (PD), featuring social worker Adriana Shnall, PhD.  She provided an overview of mood and cognition symptoms, including depression, anxiety, social avoidance, disinhibition, increased emotion, decreased emotion (which can be a sign of apathy), and cognitive impairment.  Then Dr. Shnall discussed strategies for improving communication and working around these issues.

Though this webinar focused on Parkinson’s disease, all of the discussion of mood issues is relevant to disorders in the Brain Support Network community, which include Lewy body dementia, multiple system atrophy, progressive supranuclear palsy, and corticobasal degeneration.

There was a good question-and-answer about apathy:

Q: Dealing with apathy is a great source of frustration for caregivers. At what point does encouragement on the part of the caregiver turn into nagging?

A: It can be a hard distinction. It is important to push a bit, since changes in the brain make it difficult for the person to take initiative anymore. Pick your battles. If going to see the grandchildren today is really important, but the person doesn’t feel motivated, push for that. If it’s something less important, maybe let it slide sometimes. Giving alternatives so that the person can make a choice is sometimes helpful.

While I didn’t think the discussion of cognition and psychosis was very helpful, I thought the discussion of communication issues was very good and applies to all of us in the BSN community.  Here’s a short excerpt:

What causes difficulties in communicating with someone who has PD?

  • Quieter voice: It can be harder to hear the person
  • Masked face: It can be harder to read their facial expression
  • Mood and cognitive issues: It can be harder for them to engage and express themselves

Strategies for better communication:

  • One-on-one conversations or smaller groups are best.
  • Reduce or eliminate distractions such as TV or music.
  • Sit close, make eye contact, and speak at eye level.
  • Encourage the person to take a deep breath when they start to speak, to help with speech volume. 
  • Give the person time to respond – it can take longer for a person with PD to express themselves.
  • Don’t make assumptions. 
  • Remain calm; smile.
  • Avoid using sarcasm, which can be misinterpreted.
  • Ask one question at a time, to avoid overloading.
  • Ask close-ended (yes or no) questions, which can be easier to answer than open-ended questions.
  • Give hints if the person is having word-finding difficulties.
  • Try to speak in short, simple phrases.

Watch the webinar recording on YouTube here:


Lauren Stroshane at Stanford Parkinson’s Community Outreach listened to the webinar and has shared her notes here: