Depression and Parkinson’s disease – Webinar notes

In mid-May, the Parkinson Society of British Columbia (parkinson.bc.ca) offered a webinar on depression and Parkinson’s disease (PD), featuring Dr. Fidel Vila-Rodriguez. He discussed the symptoms and treatment options for depression, as well as the state of research into depression and PD, briefly touching on experimental forms of neurostimulation to address depression.

Though the webinar focus was Parkinson’s Disease, many people with atypical parkinsonism disorders can experience depression.  So we are sharing the webinar notes here.

There was a question and answer session as well.  This was a useful question and answer:

Q: What should a person’s first step be if they suspect they have depression?

A: Talk to your primary care doctor or your neurologist as the first step. They will likely do a general evaluation to rule out other issues that might be causing your symptoms. Next, they may try you on one antidepressant medication as the first step. If that doesn’t work, often the next step is a referral to psychiatrist, who has more expertise in depression management.

This webinar was recorded and can be viewed here.

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

If you are in crisis, call the National Suicide Prevention Lifeline at 1-800-273-TALK (8255) or visit suicidepreventionlifeline.org.


Depression and Parkinson’s disease – Webinar notes
Presented by the Parkinson Society of British Columbia
May 12, 2020
Summary by Lauren Stroshane, Stanford Parkinson’s Community Outreach

Dr. Fidel Vila-Rodriguez is a professor of Psychiatry at the University of British Columbia. He provided a brief overview of Parkinson’s disease (PD), with its classic motor symptoms. However, we have learned there are also seem to be PD sub-types; not everyone has all the symptoms and the disease presents quite variably among different people. For some, the non-motor symptoms of PD are more evident and more detrimental to quality of life. Non-motor issues also tend to be more challenging to treat than motor symptoms. Anxiety and depression are very common; sometimes psychosis or hallucinations can also arise. Autonomic dysfunction, such as abnormal sweating, constipation, urinary issues, and blood pressure instability often occur as well. The focus of this presentation was on depression, specifically.

Dr. Vila-Rodriguez discussed the symptoms of depression and how to manage them, then touched on the current research on depression and PD.

Depression in Parkinson’s disease (dPD)

Around 40 percent of people with PD experience depression at some point during the course of their illness. Depression in PD (dPD) has a significant impact on quality of life, and sometimes the depressive symptoms appear long before a diagnosis of PD has been made. We don’t yet have a way to know who has depression by itself, versus who has depression with PD starting to occur. These are areas of research currently. We do know that dPD is common, that it is at least in part a result of the imbalance of neurotransmitters in the brain that occurs in PD, and that it should be treated to improve the quality of life.

Recognizing dPD is a real challenge; it often goes undiagnosed due to many overlapping features with the motor symptoms of PD. There are no diagnostic tests that help psychiatrists diagnose any mental health disorder – no imaging, blood tests, or other lab tests. Aspects of PD that can easily overlap with clinical depression and make it difficult to recognize dPD include:

  • Loss of facial expression
  • Quiet speech (hypophonia)
  • Slowed movement (bradykinesia)
  • Reduced appetite
  • Fatigue
  • Sleep disorders
  • Decreased concentration/memory
  • Sexual dysfunction
  • Flat affect (lack of energy when expressing oneself)
  • Apathy

All of these factors make it hard to accurately diagnose whether someone with PD has depression as well. As a professional, the speaker acknowledged his own learning curve here.

Depression can also cause feelings of sadness, loss of interest in activities one previously enjoyed, feelings of worthlessness, and thoughts of suicide.

Additional diagnostic challenges

It can be hard to differentiate whether the individual is experiencing a primary mood disorder or a secondary one. Did the depression start on its own, early in life, making this a recurrence of an existing illness? Or did the depression show up later in life, suggesting it is a result of PD?

Is the depression a problem of adjustment or a true mood disorder? For instance, many individuals undergo a process of loss and grieving after receiving the PD diagnosis – this is not an illness, but a natural response to any kind of loss or major shift in one’s life. By contrast, a mood disorder typically results in a mood that is distorted or inconsistent with one’s circumstances and one’s daily function. It can be difficult to tease out what is a natural response to the diagnosis and what is turning into a mood disorder that should be addressed.

A good history from the patient and the family can provide a timeline of when depressive symptoms started, which is essential for trying to determine the nature of the disorder.

Treatment options for dPD

Pharmacotherapy (antidepressant medication) is often used in dPD but its effects may be more modest than in those with primary depression not related to PD. It appears that antidepressants may not work as well in dPD. Still, they are helpful for many individuals and worth trying.

Some non-pharmacologic treatments exist, as well. Electroconvulsive therapy (ECT) has historically been a very controversial and stigmatized treatment, in part due to inaccurate movie portrayals. Today, ECT is provided non-invasively and under anesthesia. It is the most effective treatment that we have for major depression, helping depression symptoms in 80 percent of people and leading to remission in 60 percent of people, though it has not yet been studied specifically for dPD. Small currents of electricity are passed through the brain, triggering a small seizure; changes in brain chemistry after the electrical stimulation then flood the brain with dopamine. Side effects can include confusion immediately after the procedure, memory loss, and headaches or muscle pains.

Magnetic seizure therapy (MST) is an experimental treatment that is only available in clinical trials for depression, psychosis, and obsessive-compulsive disorder.  The speaker stressed that the use of MST for dPD would be considered off-label and experimental. Using magnets instead of electricity, MST works similarly to ECT, causing a controlled seizure. The side effects can be problematic, including memory problems and headache, however, it may cause less impact on memory than ECT.

The University of British Columbia will be holding a clinical trial of MST specifically for individuals with dPD.

Main takeaways:

  • Depression is frequent in PD, beyond adjustment to the diagnosis.
  • dPD decreases quality of life and is important to treat.
  • Treatments include lifestyle interventions (he didn’t have time to address this in his talk), exercise, and antidepressant medications.
  • New treatments for dPD may include non-invasive neurostimulation therapies if medications aren’t effective.

Question & Answer Session

Q: What should a person’s first step be if they suspect they have depression?

A: Talk to your primary care doctor or your neurologist as the first step. They will likely do a general evaluation to rule out other issues that might be causing your symptoms. Next, they may try you on one antidepressant medication as the first step. If that doesn’t work, often the next step is a referral to psychiatrist, who has more expertise in depression management.

Q: How effective is exercise for dPD?

A: Exercise can be quite effective for mild to moderate depression. He doesn’t know of any studies about this specifically in the context of dPD, but he has no reason to think it wouldn’t be effective for this as well. In his experience, those of his patients who are able to exercise regularly generally fare better when combating depression. Try to be as active as possible, whether you experience depression or not!

Q: Are there antidepressants that don’t leave you sleepy during the day?

A: Excellent question. Some antidepressants are associated with daytime drowsiness and help with sleep; sometimes a strategy if the person struggles with sleep as well, is to take an antidepressant at bedtime so they sleep through most of the drowsiness. One example of this is Trazodone. Other antidepressants don’t tend to cause this as much. Talk to the prescribing provider or a psychiatrist to get advice about what might work best for you specifically.

Q: Are persons with a pre-PD history of depression, whose depression was in remission at the time of PD diagnosis, at greater risk of a new episode of depression following the diagnosis of PD?

A: That is likely the case. It doesn’t mean there is a 100 percent certainty that you will have a recurrence of your depression, but it definitely increases the risk.

Q: Does having strong religious faith help with combating dPD?

A: The network of friends that is often associated with strong faith – the community – can often be helpful. Faith can be a source of support. Those who are not religious often have other ways of finding those networks of support.

 

Sleep and Parkinson’s – Webinar notes

In mid-May, the Davis Phinney Foundation (davisphinneyfoundation.org) offered a webinar on sleep and Parkinson’s disease (PD), featuring Dr. Ronald Postuma, a movement disorders specialist in Canada. He discussed the types of sleep issues commonly seen in PD and measures that can help to mitigate them.  These issues include insomnia (difficulty falling asleep or difficulty getting back to sleep), excessive daytime sleepiness, REM sleep behavior disorder (RBD), and restless leg syndrome.

Though the webinar focus was Parkinson’s Disease, all of the atypical parkinsonism disorders can include sleep issues as well.  And RBD is very common in Lewy body dementia and multiple system atrophy.  So we are sharing the webinar notes here.

The concept of “sleep hygiene” is mentioned in the presentation. The American Association for Healthy Sleep provides handy tips detailing healthy sleep habits.

This webinar was recorded and can be viewed here.

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

 


Sleep and Parkinson’s – Webinar notes
Presented by the Davis Phinney Foundation
May 13, 2020
Summary by Lauren Stroshane, Stanford Parkinson’s Community Outreach

The speaker, Dr. Ronald Postuma, described sleep as a crucial part of living with PD. It is a daily routine that helps our bodies rest and heal, and is essential for the healthy function of our brains. Yet sleep disorders are very common in PD. Almost 90% of those with PD will eventually develop sleep issues of some kind during the course of their illness. Dr. Postuma discussed the reasons for these issues,

Why is sleep so disrupted in PD?

There is a lot of overlap between the areas of the brain that are impacted by PD, and the areas that control sleep. Most – though not necessarily all – of the sleep problems experienced by someone with PD are probably directly related to PD. A general rule of thumb: did the sleep issues predate the PD diagnosis by many years? If so, they might be separate from the disease. For someone who already had diagnosed sleep apnea, or who had struggled with insomnia their whole adult life, these sleep difficulties may be exacerbated by PD, but are not necessarily caused by it. Either way, the important thing is to try to tease out what specific issues are impacting one’s sleep, and then decide how to intervene to try to address them.

From a motor standpoint, while sleeping, you basically don’t have PD.  Tremor stops, and rigidity melts away. The motor center in our brain unconsciously tells our body to move when we’re awake, but when we’re asleep, that center of the brain is inactive as well. The difficulty is that most of us wake up multiple times during the night. Even if you just woke up a little bit and would normally drift right back to sleep, once the tremor starts going, it can be challenging to get back to sleep. PD can cause increased urinary frequency, which may contribute to the need to get up during the night.

Dopaminergic medication such as levodopa (Sinemet) can cause sleeplessness, acting almost like a stimulant for some individuals if taken right before bedtime. For others, being “off” medication overnight can lead to discomfort, pain, and difficulty repositioning in bed.

What sleep disorders do we see in PD?

  1. Insomnia (difficulty falling asleep or difficulty getting back to sleep)
  2. Excessive daytime sleepiness
  3. REM sleep behavior disorder (RBD)
  4. Restless leg syndrome (RLS)

These sleep issues are discussed in more detail later in the summary.

A common pattern as people get age: falling asleep by 9 or 10pm, sleeping well for a few hours, then waking up in the early morning around 2-4am, unable to sleep again for an hour or two. Practicing good sleep hygiene will help to regulate the sleep-wake cycle; for instance, if you can’t sleep within a half hour or so, get up – don’t stay in bed! By lying in bed for hours, sleepless and frustrated, your brain will start to associate the bed with negative emotions, which can reinforce sleep problems. If it is safe given your mobility, get up and read a book or watch TV (but try to keep the screen dim, if possible) for an hour or two, then go back to sleep.

This pattern is not inherently harmful and can be fine for some people. In the morning, if you feel sufficiently rested even though you were up for an hour or two in the early morning, then that’s great. There is no need to add a prescription medication for sleep if this is your situation.

Other sleep hygiene tips:

  • Exercise (earlier in the day, not late in the evening or afternoon)
  • Light exposure during the day, especially if you have daytime sleepiness
  • Manage other comfort issues, such as temperature or noise

Question and Answer Session

Q: Is there something my neurologist can do to help, if sleep hygiene is being followed and sleep issues persist?

A: Check your dopamine therapy; they may need to add some close to bedtime if you are feeling under-medicated towards bedtime. Lots of the prescription sleep aids are designed to make you fall asleep at the beginning of the night, not to help you stay asleep throughout the night. Those that do cause you to sleep through the night typically make you sedated the next morning as well.

The speaker often uses doxepin and trazodone, older antidepressants that make people sleepy. They are not treating depression in his PD patients at all, but low doses of these medications are great for “sleep maintenance.” He uses benzodiazepines like clonazepam with caution due to the potential for dependence and sedation, though they can be useful for some patients.

Melatonin is available over-the-counter and is generally very benign. One would typically start with 3 mg or 5 mg; don’t go past 10 mg. Some people only need 0.5 mg or so, it is highly variable. The jury is out on whether it helps those with PD in general, but it can definitely help with REM behavior disorder (RBD), discussed more below.  For some individuals, melatonin works well; others need too high of a dose in order to be useful. The only real risk is that it might make you sleepy the next day if you use too much.

Q: How much sleep do I really need? What if I get less sleep than 8 hours on a regular basis, but I feel rested?

A: Go by how you feel, rather than by the total number of hours.  Anything more than 5 hours, if you feel good, don’t worry about it. Most people sleep less as they get older. Focus more on the quality of the sleep you are getting and how you feel in the morning – do you feel rested or tired? Naps can be helpful too, for those who regularly sleep less than 8 hours a night.

Q: What are “sleep attacks” and how common are they?

A: Sleep attacks are when someone falls asleep suddenly, almost immediately. This can happen when someone starts taking a sleep aid and their body isn’t used to it. It is also a known side effect of the dopamine agonist drug family, which includes some PD medications like pramipexole (Mirapex) and ropinirole (Requip). Most people do have some onset of sleepiness before they actually fall asleep; truly sudden “sleep attacks” are rare. But most people try to power through when they are feeling drowsy, and this can be quite dangerous.

If you are sleepy, you are driving, and you have PD, you have to stop immediately. Even pulling over on the side of the freeway, which is quite risky, is a safer option than trying to keep yourself awake if you are moving and can feel sleepiness coming on. Pull over, take a “cat nap” for a few minutes, or get out and move around, if it is safe to do so.

Q: How can I tell the difference between excessive daytime sleepiness and the regular fatigue that one gets with PD?

A: They can be mixed up with each other, and one can have both, but they really aren’t the same thing. An easy way to tell is: if you sit still in a chair, not doing anything, and you fall asleep right away, then you have somnolence or excessive sleepiness. If you sit in the chair and you feel mentally or physically fatigued, but you aren’t falling asleep, that’s likely PD-related fatigue.

Get outside into some sunshine, if you are able, as this should trigger your brain to wake up. If you don’t have ready access to the outdoors, or you live somewhere with gloomy weather, a lightbox lamp that simulates natural light can be helpful. Vigorous exercise improves the quality of one’s sleep and can actually give you more energy. The timing of your exercise matters, though. If you have trouble falling asleep in general, don’t exercise in the evening, as this can worsen your insomnia. Morning or daytime is better, in that case.

Q: How does caffeine play into all this?

A: Coffee (or other forms of caffeine can certainly help give you a boost if you are feeling tired during the day. But be aware that your body really gets habituated to caffeine levels pretty quickly. If you’re having a midday cup of coffee every day, it will start to lose effect. It’s better to use it just as needed, on occasion, so that your body will be more responsive to the caffeine.

Q: And what about your doctor – can she prescribe anything to help with daytime sleepiness?

A: There are a few medications, some of which are coming into clinical trials and are not available yet. Ritalin (methylphenidate) is a medication used for attention-deficit disorder in kids, and can sometimes be helpful for adults with daytime fatigue. Modafinil (Provigil) is a stimulant medication that is also helpful for some, though it can be very expensive and is not always covered by insurance.

There are some medications prescribed to really drive people to sleep deeply, with the aim of feeling more alert the next day. One of these is Xyrem (sodium oxybate), which is extremely expensive and difficult to use, in part due to its reputation as a “date rape” drug and is highly controlled for this reason. He has only prescribed this once in his career and doesn’t find it a good option for most.

In his experience, most effective is to schedule a nap or two throughout the day, as long as you are not having any trouble falling asleep at night. Short naps can be very beneficial.

Q: What is REM sleep behavior disorder (RBD)?

A: Rapid eye movement (REM) sleep is the part of our sleep cycle when our sleep is deepest, and our body is normally paralyzed. When we are dreaming in REM, it is almost like we are awake – our brain is having vivid, active dreams – but our body is kept paralyzed so we don’t move around and potentially injure ourselves buy acting out these dreams.

In those with PD and some other neurodegenerative disorders, the part of the brain that controls REM sleep is affected, and the body isn’t always paralyzed during REM. An individual doesn’t get up and walk, but often it might manifest as thrashing around, talking, singing a song, or smoking a cigarette. They are unaware this is happening, but a partner sharing the bed would definitely be disturbed by these movements and behaviors. In fact, sometimes movements such as thrashing or punching can strike the partner, leading to injuries. Safety, for the individual and their partner, is the only concern with REM behavior disorder (RBD).

Many people sleep apart. Keeping sharp objects or furniture away from the bed is a good idea. Having a mattress that is low to the floor is a good idea as well.

There are medications that can help. Melatonin can be tried over-the-counter and is helpful for many. Clonazepam can be very effective but has a high risk of sleepiness during the day; it can also increase the risk of falls due to grogginess. Antidepressant medications can actually be very helpful as well.

Q: Is it true that RBD can be a prodromal symptom of PD?  

A: Yes. We are learning that for many who develop PD, the nonmotor symptoms – sleep disturbances, mood changes, etc. – often predate the classic motor symptoms such as tremor.

Unfortunately, most people who experience RBD will go on to develop a neurodegenerative brain disorder, most often PD or a related disease called Lewy body dementia.

Q: What is restless legs syndrome (RLS)?

A: Restless legs syndrome (RLS) can occur in anyone, not just those with PD, but is also more common in those with later-stage PD and in people of European descent. It is usually described as a sense of pain or discomfort that is relieved when you move your legs. Once you lay still and try to fall asleep, the discomfort returns until you move your legs again. This can be quite bothersome and can lead to lack of sleep.

The medications used to treat RLS happen to be the same ones we use to treat PD. This can complicate matters, since we don’t want to make substantial changes to your PD therapy – which may already be optimized – to try to address the RLS. Additionally, RLS has the potential to paradoxically “augment” or worsen over time, the more dopaminergic medication is used to treat it. Unfortunately, it can be difficult to treat RLS; gabapentin is one option, but can cause sleepiness during the day. Sometimes physical measures such as going for a walk, massage, soaking the legs, or keeping the legs cool can be helpful.

Q: Are sleep studies useful?

A: If it isn’t clear what is going on with your sleep, a neurologist may order an overnight sleep study to further evaluate. Most of the time, a sleep study isn’t necessary to diagnose issues like RBD or RLS. If sleep apnea is suspected, the sleep study may be able to capture this issue so it can be treated.

Q: Do you recommend THC or CBD marijuana products to help with sleep issues?

A: THC can cause hallucinations and is generally not recommended for those with PD, but CBD seems to be helpful for some to reduce anxiety and improve sleep. We don’t really know yet because these substances haven’t been formally studied for use in those with PD.

Q: Do those with Duopa, the intestinal gel levodopa pump, tend to have sleep issues too?

A: The advantage of Duopa is a stable, consistent dosage of levodopa throughout the day. Most people turn off the pump overnight, but the complete lack of dopamine overnight can actually worsen sleep. So, for those patients, adding a little bit of oral Sinemet can be helpful.

Q: Does deep brain stimulation (DBS) affect sleep in those with PD?

A: For many, DBS does help sleep. It provides steady, ongoing therapy that isn’t subject to the wearing off or kicking in of oral medications – someone with DBS may still take levodopa orally as well, but overnight they will always have their DBS therapy ongoing even when the medications have worn off.

Q: If I only do one thing to help improve my sleep, what should it be?

A: Exercise! Wear yourself out, be active during the daytime. You should be tired from exercise, sweaty, out of breath at least once a day.

“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

Akathisia:

  • 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.

. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .

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.

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.

Communication

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.

Recommendations:

  • 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.

www.prepareforyourcare.org

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:

www.youtube.com/watch?v=BsKMUCcfehk

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

https://ucsf.co1.qualtrics.com/jfe/form/SV_3gCsLd4Ed4CRaOF

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?
www.brainsupportnetwork.org/what-is-lewy-body-dementia-and-how-is-it-treated-ucsf-webinar-notes/

Behavior and mood symptoms in Lewy body dementia
www.brainsupportnetwork.org/behavior-and-mood-symptoms-in-lewy-body-dementia-ucsf-webinar-notes/

Managing daily activities and fall prevention
www.brainsupportnetwork.org/managing-daily-activities-and-fall-prevention-in-lewy-body-dementia-ucsf-webinar-notes/

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.

Robin

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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.