Advanced stage and end-of-life care – Webinar notes

In early May, the UCSF Memory and Aging Center (MAC) presented the fifth and final webinar in its series on caregiving for those with Lewy body dementia (LBD), a discussion of advanced-stage and end-of-life care topics. While the webinar was geared towards those caring for individuals with LBD, we felt the content would also be helpful for others with cognitive impairment or Parkinson’s disease dementia. The speaker was Maya Katz, MD, a movement disorders specialist with the UCSF Weill Institute for Neurosciences. She covered what caregiving is like in advanced LBD, end-of-life care, indicators of the individual’s prognosis, and advance care planning.

This webinar was recorded and can be viewed for free on YouTube here.

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


Advanced stage and end of life care – Webinar notes
Presented by the UCSF Memory and Aging Center
May 7, 2020
Summary by Lauren Stroshane, Stanford Parkinson’s Community Outreach

The presentation began with an acknowledgment from Dr. Katz about the presentation: these are difficult topics that may be sad or challenging to think about. Still, it is important to have this kind of information to help you plan and prepare for the future. Topics included what caregiving is like in advanced LBD, end-of-life care, indicators of the individual’s prognosis, and advance care planning.

Within the palliative care field, there is a concept called “total pain,” which posits that the physical pain experienced by the sick individual is only part of all the suffering caused by the disease. The illness impacts the entire family, including the caregiver, and all family members may experience suffering in the physical, psychological, social, and spiritual realms. Unfortunately, physicians rarely bring up end-of-life issues, and less than half of caregivers say they felt prepared for what was to come.

Caregiving in advanced LBD is very challenging and often causes grief, guilt, and existential distress. Anticipatory grief, a feeling of mourning for an expected future that has been lost, is common. Most caregivers at this stage of illness never feel that they are doing a good enough job of caregiving, even though they are. This feeling of guilt is common and is a normal part of the situation that should be acknowledged. Finding support from a friend circle, support group, faith community, or family is essential. Spiritual care or counseling can be very helpful for the caregiver, family, and person with LBD during this time, to help find perspective.

Resilience isn’t only about enduring; it’s about how you are able to recharge and bounce back. It is not about becoming stoic and being able to endure an increasingly burdened situation; rather, it is about your ability to take a break and recover from a challenging situation.

Caregiver burnout is real: it affects health outcomes and leads to higher mortality in caregivers. Burnout is a healthy, adaptive response – an alarm to notify us that something needs to change before this gets worse. It’s important to notice the alarm is ringing, often by practicing mindfulness and self-care.

What does self-care look like?

  • Monitor yourself for signs of caregiver burnout: feelings of exhaustion, irritation, or frustration.
  • Promote your own well-being and seek balance.
  • Think of it as putting on your own “oxygen mask” on before you help others.
  • Build resilience in yourself.
  • Strengthen meaning and purpose in life: remember why you have chosen to care for this person.
  • Connect with yourself and with others: “connection is protection.”
  • Broaden your understanding of your options and choices (self-efficacy): remember that you do have a choice in how you handle situations, even if they are quite difficult.

Palliative care focuses on improving the quality of life of patients and their families facing serious illness. It seeks to affirm life and provide relief from pain, while offering a support system to the family and the patient. While palliative care services can be particularly essential later in the disease, increasingly it is recognized as having great value earlier in the course of the illness as well. In some studies, palliative care not only improved the quality of life, but also the length of life.

Motor symptoms

Increased slowness and stiffness can cause discomfort and pain and can lead to contractures. Contractures are stiffness or constriction in the muscles, tendons, or ligaments, which prevent the extremity from moving and can cause severe pain. Falls often increase due to the loss of balance and impulsivity. Supervision around-the-clock becomes necessary. Patients become wheelchair-dependent, and, eventually, many will become bedridden.

There are a number of strategies and techniques to manage these issues:

  • Range of motion exercises (independent or assisted) and massage to help prevent contractures
  • Skin care to ensure skin is clean and dry
  • Change positioning every 2 hours to prevent formation of pressure ulcers
  • Use a gait belt to help walk and transfer safely
  • Mechanical lifts may be needed eventually
  • Use specialized cushions or mattress to prevent pressure ulcers
  • Broda specialized positioning and mobility chairs

Dr. Katz mentioned a 2019 study in the New England Journal of Medicine entitled “Rehabbed to Death,” which found that for a minority of older adults, sometimes a stay in rehab facility after a hospitalization is actually a gateway into a cycle that sends the individual from the rehab facility back to the hospital, then back to rehab, in their final months of life. The rehab facility in this case is not really able to “rehabilitate” or improve the person’s health or quality of life; more accurately, this should be called “post-acute” care. This can be in part due to payment structures within Medicare and Medicaid that perpetuate the cycle, and it does not generally represent a good quality of life for someone in their final months or weeks.

If your loved one with LBD is hospitalized and you are recommended to send them to sub-acute rehab, it is more of a post-acute care convalescent home rather than a rehab facility. It is something to be aware of.


In advanced LBD, communication often becomes quite difficult. Voice changes, poor attention, confusion, and word-finding problems are common; impaired communication can also lead to anxiety or agitation.

Some basic tips:

  • Say “yes, and…” – do not argue, even if they are hallucinating or confused.
  • Speak clearly in a calm voice. Tone is often more important than content. Be aware of your tone and facial expressions.
  • Ask “yes” or “no” questions rather than open-ended questions.
  • Maintain eye contact.
  • Offer a reassuring response to frequently asked questions.
  • Find a place and time to talk without distractions.
  • Refer to people by their names instead of pronouns like he or she, to avoid confusion.
  • Talk about one thing at a time.
  • Have patience.
  • When giving instructions, use simple sentences – one piece of information at a time.
  • Recognize what you’re up against.
  • Understand that there will be good days and bad days.

Psychiatric symptoms

Those with advanced LBD often experience hallucinations that may be severe and frightening. Make their neurologist and psychiatrist aware if this is happening.

Behavioral treatments include figuring out or anticipating some possible triggers of the hallucinations or agitation. Cover reflective surfaces, as mirror images are often disturbing to those with advanced LBD. Use a calm tone of voice and avoid confrontation.

At the end of life, hallucinations and psychosis are often so severe that they need medication treatments to help control the symptoms.

The “Five R’s” from the Family Caregiver Handbook:

  • Remain calm.
  • Respond to the person’s feelings.
  • Reassure the person.
  • Remove yourself.
  • Return when you are calm.

Eating and taking medications

Most people will need help with feeding once the disease is advanced. Keep the patient as involved and independent as they can be; finger foods can sometimes allow them to feed themselves for longer than a fork and knife. Using a plate in a contrasting color can help your loved one to be able to distinguish the food from the plate. Always position them in the upright position when eating, and continue to sit upright for 20-30 minutes after a meal.

Sometimes, those with LBD may refuse to eat due to confusion or hallucinations. They may also experience swallowing problems, such as choking, aspirating food into the lungs, or forgetting how to swallow so that food stays in the mouth.


  • Do not use thickeners; evidence shows they can actually worsen quality of life.
  • Try carbonated beverages.
  • Try smoothie-consistency drinks; thin liquids are most difficult.
  • Give medications with applesauce or something of a similar consistency.
  • Alternate between a bite of food and a sip of fluid.
  • Have them do a chin tuck when swallowing.
  • Benevolent trickery is sometimes necessary.

Weight loss

Weight loss is expected for those with LBD and is an indication of end-stage disease. Anorexia (lack of eating) and cachexia (weakness and wasting of the muscles) are common. It may seem counter-intuitive, but high-calorie supplements or appetite stimulants will not help with these issues and can actually worsen quality and quantity of life. It can be very hard to see the number on the scale continuing to drop, but it’s not something we can fix – it’s a hallmark of end-stage LBD.

Toileting and incontinence

Give your loved one as much privacy and independence as is consistent with their safety. Give them extra time, assess if they need help, and acknowledge that it may be uncomfortable or embarrassing for them. Timed voiding – visiting the bathroom at regular times throughout the day – can be very helpful to keep them comfortable and avoid accidents. A pad inside the absorbent briefs can provide extra protection. The Liberty catheter is an external catheter that goes on at bedtime, which can be helpful. Consider keeping a urinal or commode at the bedside so they do not have to get up to the bathroom overnight.

Dental care

It’s important to continue dental care. Brush teeth twice a day; eventually, they will likely need assistance with this task. A little bit of lemon juice can aid in swallowing and help clean the palate.

Practices to avoid in advanced LBD

In the past, patients with swallowing difficulties were often given thickened liquids. However, recent studies have shown this is actually a harmful practice and should not be continued! Thickened liquids are generally so unpalatable that people often refuse to drink them, which can lead to dehydration and kidney damage.

Feeding tubes are another practice in those with dementia that have now been shown to be counter-productive: artificial nutrition does not prolong or improve life for those with advanced dementia. Rather, assisted oral feedings are the best course. Post-operative pain and infection after feeding tube insertion, as well as increased likelihood of delirium and repeat surgeries, are some of the reasons why this practice is no longer recommended. Caregiver burden often increases as well.

Fluctuations in alertness

As LBD progresses, individuals will have more and more fluctuations of alertness. This often presents as seeming “zoned out” for a few minutes, and then they come back to normal. It is not a medical emergency, and there is no known treatment.

End-of-life care: Days to weeks

At this point, most people are bedridden. Focus on creating comfortable surroundings. Bring nature indoors, if possible, and play your loved one’s favorite music. Soothing touch, such as a gentle massage, can be relaxing and pleasurable. Smells such as lavender oil can be pleasant as well.

In terms of medications, if Sinemet (carbidopa-levodopa) has been helpful for them, continue it for as long as possible. Reduce other medications to only what is necessary, or will help them remain comfortable. If liquid formulations of medications are available, switch to those; if the person is unable to swallow, then suppositories may be the best option. Most patients at this stage of LBD will need sedating medications to control the agitation and psychosis that generally increase at the end of life.

Prognostic indicators in LBD

There are certain indicators that provide a prognosis – the likely course or time frame of late-stage LBD. These indicators are used by Medicare to determine eligibility for hospice services, which require an estimate of six months or less of life.

For those with weight loss, these are the same criteria as for “Adult Failure to Thrive,” a different medical diagnosis. The main criteria for hospice eligibility are a body mass index (BMI) of less than 22, and a score on the Palliative Performance Scale (PPS) of 40 or less, indicating someone who is mainly in bed and needs assistance with activities of daily living (ADLs). These two factors are strong indicators that someone is likely within 6 months of the end of their life, and should receive hospice services to ensure the best care.

For those with dementia, hospice eligibility requires at least one of the following in the past 12 months:

  • Aspiration pneumonia
  • Pyelonephritis (kidney infection)
  • Septicemia (infection of the blood)
  • Stage 3 or 4 pressure ulcers
  • Recurrent fever
  • 10% weight loss (or greater) in the past 12 months
  • Albumin less than 2.5 mg/dL (measurement of protein indicating malnutrition) and greater than or equal to 7C on the FAST scale:
  1. Speaks 5-6 words per day
  2. Speaks only 1 word clearly per day
  3. Cannot walk without personal assistance
  4. Cannot sit up without personal assistance
  5. Can no longer hold up head independently

What do people die of in LBD?

There have been very few studies on this question. For most, aspiration pneumonia – a lung infection caused by inhaling food or oral secretions into the lungs – is the cause of death. Sometimes aspiration pneumonia leads to sepsis, an extreme reaction by the body in response to a systemic infection, which can be fatal. Reduced mobility, falls, or fractures can also be life-threatening. Failure to thrive, which is the severe weight loss associated with late-stage dementia, is another cause as well.

Hospice care: Role of the neurologist

Right now, only about 5% of patients with LBD will receive hospice services

It’s important that more LBD patients and families receive the help and care available to them through hospice. Your loved one’s neurologist can still play a helpful role even after hospice is involved, by helping to communicate and coordinate with the hospice team and educating them about the specific needs of LBD patients, such as medications that are commonly used in a hospice setting, but which should NOT be given to those with LBD.

Medications to avoid in hospice patients with LBD:

  • Haloperidol (Haldol)
  • Metoclopramide
  • Phenergan

Alternative medications that are safer to use in LBD are quetiapine (Seroquel) for agitation/psychosis and ondansetron (Zofran) for nausea.

The Advance Healthcare Directive is 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. This requires that you speak with the loved one about their wishes while they are still able to consider such decisions.

Most people who go into cardiac arrest are not able to be resuscitated successfully; only 5% of people with dementia who undergo CPR survive. It is not like the movies; the chances of a good recovery are actually quite small, contrary to the portrayal in the movies. The POLST (Physician’s Order for Life Sustaining Treatment) is a form, usually yellow, that tells emergency professionals what to do in a crisis when the patient cannot speak for themselves.

Dr. Katz cited a quote from the book Being Mortal: Medicine and What Matters in the End by Atul Gawande, MD:

“… Our most cruel failure in how we treat the sick and the aged is the failure to recognize that they have priorities beyond merely being safe and living longer.”

Two questions to ask around advance care planning:

  • If you look ahead, what worries you the most?
  • When you look to the future, what are you hoping for? (in addition to a cure)

“Our ultimate goal, after all, is not a good death, but a good life to the very end.” – Atul Gawande, MD

Question & Answer Session

Q: Are the Broda chairs covered by insurance, typically?

A: Broda chairs are covered by Medicare for hospice. Without being eligible for hospice, they are difficult to get unless you pay out of pocket (they can cost thousands of dollars!).

Q: When my loved one starts coughing or choking, I worry about aspiration and start to panic. What can I do in this situation?

A: As mentioned before, don’t use thickened liquids. Make smoothies at home, offer carbonated beverages, and practice tucking the chin right before swallowing. Alternating a bite of food and a sip of liquid can be helpful. These measures tend to help most people. Keep in mind that some foods – such as steamed vegetables – contain liquid as well. Also talk with your loved one about what foods are most important to them. Try to keep perspective – you can’t prevent every risk.

Q: Does Medicare cover palliative care for those with the early stages of LBD as well?

A: Yes! Dr. Katz sees patients in her weekly palliative care clinic for those with PD and LBD, among other related diagnoses. Some of her patients she sees as often as once a month. Those who are on hospice or otherwise struggle to come in but need care can often be seen via telehealth video options.

Q: If someone doesn’t process reality well and thinks they are in an airport, how would you respond?

A: In general, try not to argue with the person. This is their reality, at least in that moment. Remain calm and non-confrontational; don’t dismiss what they are seeing or experiencing. Is it is frightening or distressing to them? If so, reassure them that they are safe and you are with them. If they are not frightened, maybe change the conversation to a different topic and move them to focus on something else. But if they’re not bothered, it’s fine. You can even steer the conversation tangentially, such as talking about vacations you have taken together in the past, or asking them where they would want to go if they could go

Q: Does UCSF handle brain donations for those with LBD, or do they refer elsewhere?

A: If they are seen at the Memory and Aging Center at UCSF, there may be other research opportunities for brain donation. The Brain Support Network is the main organization that they would refer to.

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 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.

“Ambiguous loss and anticipatory grief” – Webinar notes

Recently, the Parkinson Society of British Columbia (PSBC) offered a webinar for caregivers on coping with ambiguous loss and anticipatory grief, featuring Trevor Josephson, a counselor with Peace Arch Hospice Society. Mr. Josephson defined ambiguous loss as a type of loss that is unclear or without closure, and anticipatory grief as the feeling that one may experience when expecting a loss or change. He said:

Ambiguous loss can be a response to psychological absence – i.e., a loved one who is physically present but may not be emotionally or mentally available, whether due to dementia, mental illness, drug or alcohol use, or other factors – or physical absence – i.e., a loved one who is physically unavailable or living away from home.

Anticipatory grief may occur before a loss that is impending or imminent, often due to the loss of an ability or relationship due to progressive illness.

Mr. Josephson offered recommendations to caregivers for coping with and managing these feelings. He encouraged caregivers to “re-define hope” in order to “discover new landscapes of hope in a world of ambiguity.” He said:

Do your best to recognize and accept the changing aspects of the relationship. Adjust how you spend time with others, and focus on strengthening bonds with your family and friends. Be open to new connections as well. Increase your comfort with ambiguity and let go of the need to have answers or certainty. Adjust your expectations and see things as “good enough.

The speaker cited multiple books by the author Pauline Boss, MD, including the 2006 book, “Loss, Trauma, and Resilience.” To learn more about Dr. Boss, visit her website,

This webinar was recorded and can be found here:

Though this webinar was offered by an organization focused on Parkinson’s Disease (PD) and the two examples shared were about couples coping with PD, nothing in the webinar is PD-specific. …which is why we are posting the notes here.

Lauren Stroshane from Stanford Parkinson’s Community Outreach website attended the webinar and shared notes.


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Ambiguous loss and anticipatory grief
Webinar presented by the Parkinson Society British Columbia
March 25, 2020
Summary by Lauren Stroshane, Stanford Parkinson’s Community Outreach

The speaker, Trevor Josephson, is a clinical counselor and clinical manager at Peace Arch Hospice Society. He defined ambiguous loss as a type of loss that is unclear or without closure, and anticipatory grief as the feeling that one may experience when expecting a loss or change.

Ambiguous loss can be a response to psychological absence – i.e. a loved one who is physically present but may not be emotionally or mentally available, whether due to dementia, mental illness, drug or alcohol use, or other factors – or physical absence – i.e. a loved one who is physically unavailable or living away from home. Anticipatory grief may occur before a loss that is impending or imminent, often due to the loss of an ability or relationship due to progressive illness.

As Parkinson’s diseases progresses over time, many caregivers find themselves experiencing these kinds of loss and grief, which can lead to feeling isolated. Although discussing these issues is difficult, it is also important for anyone in a caring role.

True for BOTH ambiguous loss and anticipatory grief:

  • A normal reaction to an uncommon loss experience
  • Can compromise relationships
  • Can result in complicated grief
  • May threaten the ability to cope

Many aspects of personhood may be lost: lost aspects of former personality, loss of identity and sense of control over one’s life, loss of meaning in life, and loss of the expected or planned future. Family members may feel frozen, missing the person their loved one used to be, and yet the loved one is still there – just different. Families cope with grief in different ways, according to their cultural, spiritual background, past experiences, and resources available to them. 

Possible outcomes of these feelings can include a sense of sense of hopelessness or helplessness, uncertainty about one’s own identity, depression, anxiety, social isolation, and impeded grief. Complicated grief stretches on for a long time, sometimes years or even decades, and may make it difficult for someone to function.

What can help someone living with ambiguous loss?

The speaker cited works by Pauline Boss, MD, including her 2006 book, “Loss, Trauma, and Resilience.” The goal is to build resiliency to live with ambiguous loss or anticipatory grief long-term, as there may be no solution to make these feelings go away. Sometimes it is necessary to adjust our natural need for control and certainty in life, to accommodate change and factors over which we have little or no say.

What helps?

1. Finding or making meaning: making sense of your losses.
* Name your problem.
* Making meaning is a responsibility – no one else can do it for us.
* Reaching out for and accepting support from others.

2. Understanding the role of control: adjusting the need for control and accepting uncertainty.
* Accept lack of control.
* Decrease self-blame.
* Don’t focus on uncertainty.
* Focus on what you know and can control.

3. Who am I now? Weathering the change of identities: 
* Be honest about the changes in yourself and others.
* Discuss roles and expectations. You can include younger family members in this discussion as well; often, they want to be included.  
* Be open to change. 

Try to avoid negative thinking, such as thinking that you caused the situation, or that you should just “get over” your feelings. It is okay to normalize anger and guilt, but try to express your feelings in a healthy, non-harmful way. Accept ambiguity; practice both/and thinking: rather than feeling one specific way to the exclusion of other feelings, you can feel both love for the person you are caring for AND grief that they are no longer who they used to be.

Case study: Barb and Ed

Barb was diagnosed with PD in 2017. Her early stage symptoms included difficulty walking and tremor. Later, she developed more advanced symptoms such as difficulty eating certain foods and significant fatigue. She started having good and bad days. Her husband Ed is her care partner.

“Being part of a community helps. Staying connected with family and friends.” – Ed

Case study: Sharon and Don

Sharon was diagnosed in 2005 and lived at home with her husband Don, her primary caregiver. She started to have many falls leading to trips to the emergency department, with increasingly serious injuries from stitches, contusions, and cracked ribs, eventually to a broken neck. Don made the difficult decision to move her to a care facility in 2019.

“I really do miss my wife… who and what she was before the Parkinson’s but there’s nothing I can do to change that other than to recall and cherish good memories.” – Don

Redefining hope: discovering new landscapes of hope in a world of ambiguity

Do your best to recognize and accept the changing aspects of the relationship. Adjust how you spend time with others, and focus on strengthening bonds with your family and friends. Be open to new connections as well. Increase your comfort with ambiguity and let go of the need to have answers or certainty. Adjust your expectations and see things as “good enough.”

Advice from members of the audience who have personal experience with these feelings:

It can be hard to get yourself to a new support group due to the fear of the unknown. But think of it as doing something just for you, something necessary, and try to get there. It really helps.

Regular exercise, such as going out for walks, can really improve your mood as well.

Connect with neighbors and friends to prevent yourself from becoming isolated.


  • Naming these feelings makes coping easier.
  • Ambiguous loss is more than just an individual experience; it is imbedded in the community.
  • Ambiguous loss can change relationships with family and friends. Being flexible in one’s thinking style and perspective can help create meaning and hope.


“Pain in Parkinson’s” – Webinar notes

Recently, the Davis Phinney Foundation ( presented a webinar on pain in Parkinson’s Disease (PD), featuring movement disorder specialist Janis Miyasaki, MD, with the University of Alberta, Canada. Depending on how pain is defined, it is quite common in PD. Certainly the same is true for the disorders in the Brain Support Network community.

Dr. Miyasaki explained that pain is a very personal experience that varies greatly between individuals. What one person calls significant, debilitating pain, another person might call a minor twinge or ache that doesn’t alter their daily habits.

During the lengthy question-and-answer session, Dr. Miyasaki was asked what concrete things people can do to help with pain on a daily basis. Her reply:

  • Take your medications regularly.
  • Try to have a daily bowel movement! Your medications will work better and you’ll feel better overall. Increasing your hydration, fiber, and physical activity can help keep your bowels moving regularly.
  • Address any mental health issues. Sleep, pain, movement, and apathy are all exacerbated by anxiety and depression.
  • Don’t blame everything on your PD; keep in mind that you may have other issues at play that need to be managed too.

This webinar was recorded and can be viewed here:

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


Pain and Parkinson’s – Webinar notes
Presented by the Davis Phinney Foundation
April 6, 2020
Summary by Lauren Stroshane, Stanford Parkinson’s Community Outreach

Dr. Janis Miyasaki is the Director of the Parkinson and Movement Disorder Program at the University of Alberta, Canada. She helped develop the first neurologist-led palliative care program in the world.

She explained that pain is a very personal experience that varies greatly between individuals. What one person calls significant, debilitating pain, another person might call a minor twinge or ache that doesn’t alter their daily habits. Depending on how you define pain, the number of people with Parkinson’s Disease (PD) who experience it varies widely.

What types of pain do people with PD experience?

People with PD experience similar types of pain as the general populace. Pain classification is broken down into these categories: 

  • Musculoskeletal pain: Particularly common in those of us over 40, this refers to pain in the muscles and joints, whether due to old injuries or arthritis, among other causes. Movement tends to improve this type of pain; because those with PD tend not to move as much, this type of pain can be exacerbated by PD.
  • Neuropathic pain: Damage to the sensory system impairs the sensations being transmitted back to the brain. Sometimes this causes numbness, but sometimes it causes pain. In this case, the brain is perceiving pain or discomfort due to the damage or disease affecting the nerves. This type of pain varies widely, but may be felt as sharp, shooting, burning, tingling like “pins and needles,” creeping, or stabbing pain.
  • Pain related to treatment: Some people with PD experience pain when their medications are wearing off or kicking in. This transitional period sometimes triggers dystonia, or abnormal contractions of the muscles, which can be painful.

Chronic or recurrent pain can often get in the way of exercise, which we know is so important for those with PD. For those who have been sedentary for years or decades, and are trying to increase their activity, it can be challenging to get used to the pain that often comes with becoming more active.

Neuropathic pain tends to be constant all day, or may be worse when resting, whereas musculoskeletal pain often comes and goes depending on activity and fatigue.

Dr. Miyasaki noted that most of her patients with PD will exercise diligently if she tells them to. Just like any athlete starting out, you need to start gradually. A good rule of thumb is to do a moderate amount of exercise for 35 minutes, 5 times a week. Moderate exercise means being slightly short of breath while trying to keep up a conversation during your exercise.

As your endurance improves in terms of muscular strength and cardiovascular fitness, it will take more effort to get to that point of being slightly short of breath. For some patients, taking medications before exercise can be helpful, to make sure they feel “on” and can move as well as possible. For those who have musculoskeletal pain, try taking some ibuprofen or acetaminophen about an hour ahead of time, to help with discomfort.

For those who are experiencing a lot of pain, that can be a sign that something is wrong! Maybe your form isn’t correct, or maybe you are pushing too hard. It is also possible you have an injury or other unrelated medical issue. Don’t discount pain entirely; it is always possible there is something else going on that needs to be ruled out – you can get other illnesses besides PD! Have a good relationship with your primary care doctor and consult them as needed.

Treatment of pain

Non-steroidal anti-inflammatory drugs (often called NSAIDs) are often taken over-the-counter to treat pain, fever, and inflammation. These include medications like Advil (ibuprofen), Aleve (naproxen), Aspirin (acetylsalicylic acid) and others. NSAIDs can be hard on the stomach, with potential to cause peptic ulcer disease or bleeding. Taking them can be fine in small amounts, but there are safer options.

Tylenol (acetaminophen) is an important mainstay of pain management, often considered the first step in the “pain ladder.” There is nothing intrinsic about PD that changes how pain is treated; for those who tolerate acetaminophen well, it is a good medication to try for pain in moderation.

Editor’s note – Make sure not to exceed the maximum recommended daily dose of acetaminophen (Tylenol) which is 4000 milligrams (mg) per day, due to the risk of liver damage. Check the dosage on the bottle and be aware that many over-the-counter medications include acetaminophen, and you need to take that into account to avoid taking too much overall. Some of the many over-the-counter drugs that often contain acetaminophen as one of the active ingredients include Nyquil and Dayquil, Mucinex, Robitussin, Dimetapp, Excedrin, Sudafed, and Theraflu, among others. Check the active ingredients on the label or ask the pharmacist if you aren’t sure.

Physical methods such as cold therapy or heat therapy can also be very beneficial but must be used cautiously due to the risk of injury; if someone is immobile and cannot maneuver themselves off the ice pack or heating pad, then they need to be carefully supervised to ensure safety.

For individuals who experience painful dystonia – abnormal muscle contractions, usually in the hand or foot – when their medications are kicking in or wearing off, sometimes decreasing the overall amount of PD medication they are taking, if it has been increased significantly over time, can actually help decrease the painful dystonia by providing a smoother “on” period without as much fluctuation in doses. 

If dystonia is prolonged, severe, and disabling, but someone still responds well to levodopa, then surgery such as Deep Brain Stimulation or an intestinal levodopa pump (Duopa) may provide smoother therapy without the painful wearing-off or kicking in dystonia. In some cases, injections of botulinum toxin (Botox) can provide temporary relief, but must be repeated every 3 months to main effectiveness.

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Question and Answer Session

Q: How does neuropathic pain differ from overdoing it in exercise, and how can I tell the difference?

A: Neuropathic pain tends to occur spontaneously and be consistent throughout the day, as opposed to musculoskeletal pain which tends to come and go depending on time of day or activity. When you know that you’ve increased your activity, chances are, the pain is associated with your activity. A physical therapist can be very helpful in helping to sort out injury from normal pain.

Q: Is my dystonia caused by PD?

A: There are other causes of dystonia as well. Does it occur relative to your PD meds? Then you can say that it may be related to your PD and its treatment. If we stop the levodopa, you might not have the dystonia, but you also might not feel “on,” ever. It is due to progression of the illness. As time goes on, the brain is less able to handle the levodopa consistently, causing motor fluctuations, dyskinesias, sometimes dystonia. It is important to get your symptoms evaluated by a neurologist to determine if there might be another cause of the dystonia, and to learn about treatment options.

Q: I often experience leg cramping at night – is this related to PD?

A: It may be. Cramping, pain, stiffness, and tremor sometimes reemerge overnight. See if a dose of levodopa taken during the night (put it at your bedside so it’s accessible). If that is not helpful, see your neurologist or primary care doctor to rule out other possible causes of nighttime leg cramps.

Q: I started using magnesium for muscle cramping in my legs and it has been helpful. Is this something you recommend for your patients?

A: It’s important to go on a case-by-case basis and speak with your doctor before trying something new. For some people, magnesium may be helpful. There are a lot of different causes of leg cramps so it’s important to be evaluated.

Q: Is there any link between PD and pinched nerves?

A: No, there is no connection that we know of between PD and pinched nerves (herniated discs). Both tend to occur as we get older.

Q: How does pain affect mental well-being?

A: People who are already anxious and depressed tend to rate their pain higher than someone who is not anxious and depressed. Pain that is unrelenting is often also a cause of anxiety and depression. If someone has pre-existing depression, it is very important to treat that as well. 

People are sometimes reluctant to take medication for mental health issues; many of us grew up in the era of “pull yourself up by your bootstraps, keep a stiff upper lip.” But in PD, depression and anxiety are associated with real neurochemical changes in the brain. For those with PD, treatment for anxiety or depression is like taking a vitamin – replacing what has been lost.

Q: What is your opinion of cannabidiol (CBD)?

A: A substance found within cannabis (marijuana), CBD is sometimes used medicinally as it does not produce a “high” like THC, another compound in marijuana. CBD is commonly used and legal now in Canada. Studies have found that it is less effective than antidepressants such as duloxetine, but it may be slightly more effective than acetaminophen or ibuprofen.

People are attracted to it because it is perceived as “natural,” but keep in mind that lots of the substances that we use from the pharmacy originated from the natural environment – Aspirin is derived from wintergreen, for example.

There are possible side effects with CBD, such as hyperemesis syndrome (uncontrolled vomiting), lack of mental clarity, apathy, and cognitive changes. CBD also is not regulated – you don’t necessarily know what you’re getting, in terms of purity. It often has THC even if it says pure CBD, which can cause psychiatric effects like hallucinations that are very concerning in PD.

Q: Does deep brain stimulation (DBS) for PD help with pain?

A: If your pain is related to dystonia when your medications are kicking in or wearing off, then DBS may be helpful since it provides a steady state of therapy and oral medications can often be somewhat reduced.

Q: Can you elaborate on the “pain ladder” you mentioned?

A: We always want to start with the least risky and invasive methods to reduce pain. Cold or heat therapy can be beneficial, as mentioned previously. Stretching can be very helpful as well, though depending on the motivation and cognitive abilities of the individual, they may need help from a care partner to encourage and assist with stretching.

Next on the ladder are acetaminophen and ibuprofen. After that comes stronger NSAIDs like naproxen, then antidepressants or medications that might have antidepressant abilities, like Tramadol or duloxetine. Next come anti-epileptic medications that have been found to help with pain, such as gabapentin and pregabalin; these are higher up on the ladder because they often cause sedation or increased risk of falls in those with PD. At the top of the ladder are opioids, if your pain has not been relieved by these previous steps. These have the potential to cause a lot of side effects. Sometimes those with PD can experience relief even with doses that are very small. Palliative care doctors are often accustomed to treating cancer patients who may need much higher doses than those with neurodegenerative illness; in some cases, a fraction of a small dose is enough to help manage pain in those with PD.

Q: What is neuro-palliative care?

A: Palliative care is a multidisciplinary branch of medicine that aims to improve or maintain quality of life and decrease suffering for those who have serious illness. Neuro-palliative care integrates this approach with neurologic care for those in the later stages of degenerative neurologic diseases like PD. The team should include a neurologist with palliative care training, or a neurologist/palliative care specialist dyad working together.

In the later stages of PD, the individual often needs a walker or wheelchair and has significant swallowing problems, and can benefit from visiting a neuro-palliative care clinic in addition to their existing care team.

Dr. Miyasaki’s clinic tries to help people who have unaddressed symptoms, couples who have caregiver burnout, and pain as a significant problem. For ongoing needs, it’s really hard to access ongoing neuro-palliative care; it’s not widely available among other medical centers. Hopefully that will change in the future!

Q: Is shortness of breath a symptom of PD?

A: It can be. Once again, it is important for the primary care doctor to examine you and rule out any cardiac or respiratory issues that could be happening. If everything else is ruled out, then it may be your PD, and is often related to medication wearing-off anxiety. If that is the case, consider whether there are any cognitive issues, and also if the anxiety is being managed. Sometimes getting the anxiety under better control can really improve the shortness of breath. 

Q: When should I consider DBS surgery?

A: Probably sooner than you think! It’s not a last resort. DBS doesn’t improve symptoms beyond your best “on” with levodopa. That’s why we want to make sure patients have a response to levodopa before surgery. DBS can provide you with less “off” time and often a reduction in oral medications. If you have dyskinesias or other side effects from levodopa, then being able to treat with DBS and decrease medication can be a major benefit.

To be a surgical candidate, ideally you’re still having some good response to levodopa and are still cognitively doing well, still active physically. Many people wait until they’re in their 70s and may not have as much benefit from DBS, and more likely to have surgical complications and cognitive decline.

Q: What are some concrete things people can do to help with pain on a daily basis?

A: As Buddhists would say, living is a painful condition. We get to decide what we will do to try to mitigate it.

  • Take your medications regularly.
  • Try to have a daily bowel movement! Your medications will work better and you’ll feel better overall. Increasing your hydration, fiber, and physical activity can help keep your bowels moving regularly.
  • Address any mental health issues. Sleep, pain, movement, and apathy are all exacerbated by anxiety and depression.
  • Don’t blame everything on your PD; keep in mind that you may have other issues at play that need to be managed too.

“How to avoid burnout in the middle of a pandemic” –

The article describes the symptoms of burnout:  “People who are burned out are often detached from others, feel drained and unable to cope, and lack their usual energy. They also often experience physical symptoms such as headaches or stomachaches.”

Some useful suggestions for avoiding burnout are shared, including:

  •     stay connected with others
  •     shift your standards
  •     set boundaries for yourself
  •     schedule time for yourself
  •     change your environment
  •     move your body
  •     list your fears

I liked all the suggestions except for getting a side hustle (which is why I didn’t list it above).

Certainly this article applies to avoiding “caregiver burnout” as well. The full article is copied below.



How to Avoid Burnout in the Middle of a Pandemic
May 7, 2020, 4:30pm
by Rachel Fairbank

Burnout is defined as a state of emotional, mental and physical exhaustion brought on by prolonged stress. Given the nonstop barrage of stressors these past few months, many of us are probably well on our way to developing burnout, if we aren’t there already.

“Burnout is chronic stress gone awry,” says Sheryl Ziegler, a psychologist and author of the book “Mommy Burnout: How to Reclaim Your Life and Raise Healthier Children in the Process.”

Stages of burnout

The stages of burnout include a honeymoon phase, in which a person devotes extra time and energy to dealing with their stress; followed by mitigation strategies, when a person is crankier than usual but is still trying to juggle everything; followed by chronic stress, a point when people have an even harder time coping and often find ways to detach themselves from others; and finally, by full-blown burnout.

If these stages sound familiar, well, at least you’re not alone. As a society, we seem to be on a path to burnout together. We started in those ambitious first few weeks with big plans: We were going to learn how to bake and knit! After a few weeks of trying to juggle quarantine and work from home and homeschooling and job loss. Now we all seem to be stuck in a phase of chronic stress, either lashing out at the people around us or detaching from the world at large.

“A lot of people are in the second and third stages right now,” Ziegler says. “We are all here.”

That said, there are strategies that we can employ, even in an era of physical distancing and omnipresent fears about our health and safety. These are some of Ziegler’s recommendations for avoiding burnout during a pandemic.

Know the signs of burnout

“Knowing the signs of burnout are really important,” Ziegler says. What stage you might be in will vary, and it’ll look a little bit different for everyone. People who are burned out are often detached from others, feel drained and unable to cope, and lack their usual energy. They also often experience physical symptoms such as headaches or stomachaches.

As Ziegler points out, it’s normal to be stressed and anxious, given everything that is going on. But just because this stress is understandable doesn’t mean we can’t find ways to cope.

Stay connected with others

We may have to practice physical distancing, but that doesn’t mean we can’t be creative about staying connected with others. When it comes to preventing burnout, strong social connections are key.

As Ziegler suggests, in addition to friends and families, lean on online communities that might share some of your concerns. Whatever your situation is, whatever your struggles are, there are people out there who can relate. Make sure to prioritize these connections, as they will help buffer you from burnout.

Shift your standards

It is okay to cut down on the number of hours of school each day or to say no to extra job duties at work. As Ziegler points out, as much as we want to do everything, there just aren’t enough hours in the day. It’s important to be selective about what we take on as well as practical about what we can accomplish, given our constraints.

Set boundaries for yourself

Boundaries are really important, especially in these times. Boundaries can help make your workload and home life a little bit more manageable. It’s okay to say no to things, it’s okay to adjust your expectations, and it’s okay to prioritize what’s most important.

Schedule time for yourself

If we put a meeting on our calendars, we do everything we can to make sure we show up to it. Caring for yourself, in whatever form that takes, is just as important.

“Every day, schedule time for yourself,” Ziegler says. “When we are under stress, we don’t tend to squeeze in healthy things for ourselves.”

So carve out a time for yourself. Put it on your calendar and give that time as much priority as a work responsibility. Your mental health and wellbeing is important.

Have a change of environment

Even small changes of environment can help keep us from feeling overwhelmed. This could be as simple as moving from the living room to kitchen or going for a short walk around the block. Given that we are all at home all the time now, a small change of environment will go a long way toward helping us feel mentally refreshed.

Move your body

As Ziegler points out, there’s a big connection between staying active and maintaining good mental health.

“People have to remember working out is good for your mental thoughts,” Ziegler says. As we are a lot more sedentary than usual, moving can help us stave off some of the effects of abrupt changes in our routines.

Even if you only have ten minutes, it’s worth fitting in a few calisthenics or a quick walk.

Practice mindfulness with your diet

Being at home all day while stressed means a lot more snacking and a lot more unhealthy foods. Unfortunately, although in the short term, reaching for a bag of chips or a carton of ice cream feels good, when it comes to balancing stress, these snacks hurt more than they help. Being mindful about what you are eating will help in the long run.

Power naps are rejuvenating

If you have twenty minutes, consider taking a power nap to boost your energy and productivity. Find a quiet spot, set the alarm and do your best to relax. If it’s hard, Ziegler points out that power napping is something that gets easier with practice.

Early afternoon, when your concentration and ability to focus is suffering, is a good time for a power nap. Twenty minutes is the sweet spot, as 30-60 minutes can leave you feeling more tired than when you fell asleep. Of course, if you’ve got 90 minutes for a full nap, that also works, but that’s harder to carve out of your schedule.

Notice your words

Words have a way of becoming reality. “We have to notice our words,” Ziegler says. Allow yourself to vent, allow yourself to release all your fears and worries, but then find a way to pivot and channel your fears and worries into something productive.

A side hustle can help you feel in control

If you are worried about your job security—or if you have been laid off—developing a side hustle can be a productive way to pick up new skills while also giving you a way to regain control over your situation.

Now is the time to think about what other skills you have you can use to your advantage. If nothing else, this will help you regain a sense of purpose, which is key to weathering periods of potential burnout.

List your fears

There are so many fears and anxieties in the world right now, and for good reason. Instead of bottling up them all up, Ziegler suggests listing them all out and then—and this is the key part—coming up with strategies for how you would cope if the worst happened.

“Give yourself your moment,” Ziegler says. “Then, stop, and make a plan around it.”

Are you afraid of losing your job? Not being able to pay rent? Getting sick and needing someone to care for your children? Name these fears, then start making plans. Just the act of thinking through them will help your regain a sense of perspective and control.

Right now, the world is a scary and stressful place. There is no avoiding it. However, even in the middle of all these worries and anxieties, there are still actions we can take to help mitigate the worst effects. Adjust your expectations, carve out time for yourself and do whatever is in your power to preserve your sanity for the long run. Because it’s going to be a long run.

Rachel Fairbank is a freelance science writer based in Texas. When she is not writing, she can be found spending time with her family, or at her local boxing gym.