Short video on the science of Lewy Body Dementia – what is a “Lewy body”?

Though this video is 18 months old and addresses in a general way the (now old news) that actor Robin Williams had Lewy Body Dementia, I still think the video is worth watching.  It’s one of the best descriptions I’ve seen of Lewy bodies.  The video, titled “The Science of Lewy Body Dementia,” is about 4.5 minutes, and it’s part of the “SciShow.” Here’s a link:

www.youtube.com/watch?v=cIHTiY_68JI

The Science of Lewy Body Dementia
SciShow
Hosted by: Hank Green, SciShow (patreon.com/scishow)
Published on Nov 13, 2015
Description:  This week in SciShow News we dissect what a Lewy Body is and what they are capable of doing.

One thing confused me about the video.  The statement is made that the “autopsy of Robin Williams showed he was suffering from the early stages of Lewy Body Dementia.”  And the video says that the widow of Robin Williams indicates he had no advanced symptoms. However, we know from his autopsy report that he had the most severe level of Lewy bodies in the brain one can have.  And friends reported that he had delusions.  But, other than that, it’s a great video!

My notes are below.

Robin
———————————

Robin’s Notes from

The Science of Lewy Body Dementia
SciShow
Hosted by: Hank Green, SciShow (patreon.com/scishow)
Published on Nov 13, 2015
This week in SciShow News we dissect what a Lewy Body is and what they are capable of doing.

Autopsy of Robin Williams showed he was suffering from the early stages of Lewy Body Dementia.

LBD is often mistaken for PD until hallucinations begin.

There’s about a minute here on Lewy bodies and a bit about alpha-synuclein.

We only zero-ed in on the differences between Lewy Body Dementia and Parkinson’s Disease in the 1990s.

LBD is misdiagnosed so frequently — as either Parkinson’s or Alzheimer’s Disease, depending on an individual’s symptoms — that is hasn’t attracted much attention.

Host says that new methods in brain tissue only allowed us to see Lewy bodies in other parts of the brain (perhaps besides the brain stem) in the 1990s.

Symptoms of LBD, which host also called advanced LBD:
* hallucinations
* loss of spatial reasoning
* sleep disorders
* cognitive and memory impairment, similar to Alzheimer’s

According to Susan Schneider Williams’s statement and the autopsy report of Robin Williams, he was not suffering from any of these advanced symptoms at the time of his death.

“Understanding Dementia” – online course begins July 24th

“Understanding Dementia” is an online university course about the latest in dementia research and care. This free 9-week course begins July 24th, 2017, and is open to anyone. It’s offered by the University of Tasmania (Australia). There’s no info as to what types of dementia will be covered. Presumably the course will include at least the big four dementias – Alzheimer’s, vascular, Lewy body, and frontotemporal. Enrollment ends on August 18th. See:

mooc.utas.edu.au/courses/understanding-dementia-2017-06

If anyone attends, please take notes and share what you’ve learned!

Robin

 

Webinar Notes – Sleep Issues in LBD, MSA, and PD

Yesterday, the Lewy Body Dementia Association (lbda.org) hosted a good one-hour webinar on sleep problems in Lewy Body Dementia (LBD), also known as Dementia with Lewy Bodies (DLB). Most of the webinar is of relevance to sleep issues in Multiple System Atrophy (MSA) as well.

The presenter, a sleep disorders neurologist at UCLA, addressed these topics:
* function of sleep
* how much sleep do we need
* obstructive sleep apnea (OSA)
* REM sleep behavior disorder (RBD)
* restless legs syndrome (RLS)
* insomnia
* conclusions about RBD and DLB

I was surprised that excessive daytime sleepiness was not addressed during the presentation. I suppose since the sponsoring pharmaceutical company is studying a drug for RBD, that was really the focus.

The highlight of the webinar was the question-and-answer session, which was well-facilitated by Angela Taylor of the LBDA. The questions were about:
* RLS and diabetic neuropathy
* excessive daytime sleepiness
* napping
* melatonin dosage
* neurodegenerative disease risk

My detailed notes from the webinar are below.

The presentation is here:
lbda.org/downloads/lbda-sleep-webinar-slides.pdf

The webinar recording is here:
youtube.com/watch?v=bnHQwduxGSA
(Note: there’s a problem with the slides for the first eight minutes or so.)

Robin

———————–

LBDU Webinar: Sleep Issues in LBD

Presenter: Dr. Alon Y. Avidan, MD, MPH, Professor of Neurology, Director of the UCLA Sleep Disorders Center.

Notes from presentation:

Theory that sleep is restorative. Memory is consolidated. If you don’t sleep well, your memory and cognitive abilities may decline.

Sleep is rejuvenative. Brain’s glymphatic system is most active during sleep. The brain “takes out the trash” while we sleep. Trash = byproducts and toxins. The function of the glymphatic system was only characterized in the last few years. Lack of good sleep puts the patient at risk for more disease and poor health.

14:13 Most adults need 7-8 hours. If less than 4 hours, you are putting yourself at risk for heart disease, depression, diabetes, and cardiovascular disease. Sleep needed varies by age groups. National Sleep Foundation recommends 7-9 hours for adults. Later, the American Academy of Sleep Medicine recommends 7-8 hours; less or more than that is not good. Healthy sleep duration is 7 hours or more each night (regularly). Good sleep on weekends is important.

Less than 7 hours/night regularly, puts you at risk for weight gain and obesity, diabetes, hypertension, heart disease, stroke, depression, increased risk of death, depressed immune function, increased pain, poor performance, increased risk, and increased accidents.

16:48 Sleep is often affected by aging process but it doesn’t have to be this way. As we age, we have more pain, more sleep apnea, more RLS, more comorbid disorders, and take more medications. Don’t be satisfied with 4-5 hours of sleep. Make an effort to improve sleep quality and duration.

OSA
18:10 Obstructive sleep apnea is affected by age, weight, alcohol. Alcohol can convert someone from simple snoring to sleep apnea. 20-80 times to stop breathing in one hour! CPAP therapy is gold-standard treatment.

RBD
20:20 This is the most important sleep disorder in those with LBD. REM sleep behavior disorder is a type of parasomnia (abnormal behavior in sleep). Muscles are supposed to be paralyzed when dreaming. In RBD, patients act out dreams. Concerns are self-injury or injury of bed partner. Incomplete transition from REM sleep to non-REM sleep (where you are nearly awake). REM sleep without atonia.

RBD is common in alpha-synucleinopathies (PD, DLB, MSA). RBD can present before the onset of neurodegenerative disease. Usually 2/3 of patients will develop neurodegenerative disease within 10 years.

Sleep neurologists should tell patients diagnosed with RBD that they are “at risk for dementia later in life.”

RBD is part of the diagnostic criteria for DLB.

Dreams in RBD are rarely pleasant.

26:10 Treatment focuses on safety: bedroom safe; remove hard/sharp objects; sleep in padded mattress; place mattress on floor; cover windows with heavy curtain; use pillow barricades. Until managed, sleep alone. Sleep in sleeping bag until treated. Medications: melatonin (he prefers because it’s the safesty; 5mg up to 15mg), clonazepam (.25 to .5mg; had side effects, such as grogginess).

RBD could be a window of opportunity in DLB. Nelotanserin clinical trial is ending at the end of June 2017. Lead institution is Mayo.

RLS
28:19 Restless legs syndrome. Urge to move the legs occur primarily in the evening. Many LBD patients have this condition. Very bothersome. Often physicians don’t know how to diagnose RLS. Symptoms get worse with inactivity. Difficult to relieve leg discomfort. Driving or flying long distances – especially difficult. Effective treatments available.

Insomnia
29:46 One-third of patients with neurodegenerative disease are affected by insomnia, particularly middle-of-the-night insomnia. Alcohol is not a good idea for insomnia. Get out of bed; avoid staying in bed awake. Talk to your MD about potential treatments.

30:40 Conclusions
* sleep disorder increases odds of DLB by 5x over Alzheimer’s
* RBD is strongest prognosticator of dementia, including DLB

Future research into RBD will focus on:
* benefit of exercise
* role of dietary factors (dairy products, saturated and animal fat, lower use of Mediterranean diet and of non-steroid drugs)
* role of melatonin as a neuroprotective agent
* establish guideline about agents that can help prevent phenoconversion from RBD to DLB

 

31:48 Notes from Question-and-Answer session:

Q: RLS and diabetic neuropathy
A: Common situation. The medication gabapentin can address both problems. Talk to a PCP. RLS diagnosis must be validated.

 

Q: Excessive daytime sleepiness is common. How do you know if sleepiness is excessive?
A: Well-validated measures of EDS to assess what is abnormal and what is not. Epworth Sleepiness Scale (ESS) can be used. You can find the scale online. Falling asleep immediately upon watching TV at any time of day, for example, is excessive.

 

Q: What is the maximum number of nap-time that will not disrupt nighttime sleep?
A: If “hours,” it’s already not good. Naps should be short (15-20 minutes) and strategic (1-3pm). Sleep is not like a bank account.

 

Q: What treatments are there for EDS?
A: Stimulants should not be the focus. We should use good sleep to give us energy. Exception to the “avoid medications” rule is narcolepsy, which is very rare. Shift workers or patients with sleep apnea who are still fatigued could be given stimulants. But I would never give someone with EDS a stimulant because this doesn’t address the problem of poor sleep. First find out what is causing the sleep disruption. One thing that can be helpful in treating LBD sleepiness is light. Light exposure, especially early in the day, is important. We don’t have good data on wake-promoting agents in LBD.

 

Q: Dosage of melatonin for LBD for sleep or RBD?
A: Melatonin for RBD – high-dose melatonin (3mg, increasing by 3mg every two weeks up to 12mg). We have good data on RBD. Could consider 5mg sustained release melatonin. This increases by 5mg every two weeks up to 15mg. If 12mg or 15mg don’t work, consider adding clonazepam. If that doesn’t work, look again into the cause of RBD. Often RBD is due to other substance patient is taking but forgot reporting initially to MD.

Low-dose melatonin (.5mg) – circadian rhythm problems. Middle-dose melatonin – insomnia.

 

Q: Is RLS or sleep apnea associated with neurodegenerative diseases?
A: No data whatsoever that RLS puts you at risk for neurodegenerative disease. Nor is it a prognosticator.

Untreated sleep apnea puts you at risk for accelerated neurodegeneration, if you already have a predisposition for development of Alzheimer’s.

 

Q: If you have RBD and receive treatment for it, can you reduce risk of neurodegenerative disease?
A: We don’t know. If you use clonazepam, you are probably not going to reduce risk of disease. We don’t know for sure about melatonin. Some believe that melatonin is neuroprotective. But patients taking melatonin don’t have slower progression towards neurodegeneration. Disease process isn’t reversed.

RBD is a great biomarker. This means that we can use it to test neuroprotective agents.

 

Angela Taylor, LBDA:
LBDA research page — lbda.org/participate-in-research

Enrollment for one RBD study has been extended.

 

Sleep issues in LBD and MSA, Thursday 6/22, webinar

The Lewy Body Dementia Association (lbda.org) is hosting a webinar this Thursday 6/22 at 11:30am California time on sleep issues in Lewy body dementia (LBD).  The content also applies to those in the multiple system atrophy (MSA) and Parkinson’s Disease (PD).

Sleep issues to be addressed by a UCLA sleep disorders specialist include REM sleep behavior disorder, daytime sleepiness, restless leg syndrome, insomnia, obstructive sleep apnea, and periodic limb movement.  There is no charge to attend.  Details below.

Updated, 6/23/17:  See our blog post of the notes from this webinar:

www.brainsupportnetwork.org/webinar-notes-sleep-issues-in-lbd-msa-and-pd/

Robin

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lbda.org/sleep

Webinar – Sleep Issues in LBD
Thursday, June 22, 2017
2:30 pm Eastern Time

Did you know that most people with LBD have at least one sleep disorder?
From REM sleep behavior disorder, which causes frightening dreams that sufferers often act out, to daytime sleepiness, restless leg syndrome, insomnia, obstructive sleep apnea, and periodic limb movement, those with LBD often have sleep issues that dramatically effect their quality of life and can lead sometime lead to injuries to themselves and others. In addition, the sleep disorders associated with LBD can begin years to decades earlier than other common LBD symptoms such as memory loss or confused thinking.

Join LBDU and Dr. Alon Y. Avidan, MD, MPH, Director of the UCLA Sleep Disorders Center for a free, informative webinar on sleep issues in Lewy Body Dementia.

Dr. Avidan will explain changes in sleep patterns with aging specific to Lewy Body Dementia. He also will share information about the management of LBD-related sleep disorders, as well as treatment strategies, ongoing research and clinical trials.

Presenter:
Dr. Alon Y. Avidan, MD, MPH
Professor of Neurology
Vice Chair Clinical and Educational Affairs
Department of Neurology
Director of the UCLA Sleep Disorders Center
David Geffen School of Medicine at UCLA

“‘Like Groundhog Day’: The challenges of caring for an aging parent”

This article in the Sydney Morning Herald is about the role reversal when children are now taking care of parents and what a difficult adjustment that is for everyone.  The stories of three women are described.

Here’s a link to the article:

www.smh.com.au/lifestyle/life-and-relationships/like-groundhog-day-the-challenges-of-caring-for-an-ageing-parent-20170413-gvk4rt.html

April 14 2017
‘Like Groundhog Day’: The challenges of caring for an ageing parent
by Cosima Marriner
The Sydney Morning Herald

“Grief before death – understanding anticipatory grief”

healthdirect is a government website in Australia with health information.  This is a short article on anticipatory grief — the grief caregivers can feel though the care recipient is still living.

The full article is below.

————————-

www.healthdirect.gov.au/understanding-anticipatory-grief

Grief before death – understanding anticipatory grief
healthdirect (Australia)

Carers often feel grief even though the person they’re caring for is still alive. This could happen if the person being cared for has a life-limiting condition (a condition that has no reasonable hope of a cure), or their personality has been affected by their illness. Although not everyone experiences this ‘anticipatory grief’, people who do can feel the same emotions and sense of mourning as if the person had actually died.

You may have a wide range of emotions, such as loss, dread, guilt and anxiety. Everyone reacts differently, and it’s good to accept that your coping method is unique.

The grief you might experience may not initially be for the person you care for, but for the life you currently lead. Becoming a carer can change your life dramatically, and you may feel like you’ve lost some of your freedom or social life.

The extra responsibility, and not being able to do anything without planning, can be stressful. You might feel guilty about feeling this way, but it’s a natural reaction to such a big change in your life.

Grieving before a person dies doesn’t necessarily mean that you won’t grieve when they pass away. Everyone reacts differently to these circumstances. While some people feel prepared for the death and have closure, others may start the grieving process all over again.

If you experience pre-death grief, it’s vital for you to talk to someone.

Dealing with conditions that affect a person’s personality and memory can be very traumatic, particularly if you’re caring for a relative or close friend.

Many carers find that they grieve for the loss of the person they once were. You might grieve for the memories that you have together, which the cared-for person will forget. You may grieve for the changes to their personality or for any future plans that they may no longer be able to carry out. You may feel conflicting emotions as the person you look after loses their mental functions or stops recognising you.

Terminal conditions
Finding out that someone you care for has a terminal disease can leave you feeling powerless and devastated.

If you experience pre-death grief, it’s just as vital for you to talk to someone and feel supported as it is when someone has already died. You might find that it helps to talk to friends and family, or the person you care for. A long illness means both of you have time to slowly prepare for the death, to say what you want to say or to share memories. One idea is to write about what the person has meant to you and then read it aloud to them.

You might also consider talking to a counsellor. It can help to discuss your feelings with someone who is objective and doesn’t have emotional ties to the situation. This can help, particularly if the person you care for is in denial about their condition. The counsellor can talk to you about your feelings, suggest ways that you can help the person being cared for, and discuss the difficult post-death decisions that you may need to make, such as organ donation.

Bottling up your emotions can leave you feeling overwhelmed and, in some cases, affect your health. So it’s important to find someone to support you.

Source: NHS Choices, UK (Grief before death), nhs.uk

“Some Seniors Just Want To Be Left Alone, Which Can Lead To Problems”

This is a good article on why some seniors refuse home health care after hospitalization.  Medicare’s “home health benefit” is described generally.

Reasons seniors refuse care include:
* thinking that care is the first step in someone taking away independence
* not wanting strangers in the home
* not wanting someone to see hoarding or physical neglect in the home
* cost

On top of this, many seniors have:
* “unrealistic expectations of what recovering from a hospitalization will entail”
* compromised cognition, meaning they cannot understand their own needs or limitations

Some suggestions were given for communicating with seniors:

* Use plain language.  For example: “A nurse will check your medications and make sure they’re all in order. She’ll assess if you need physical therapy to help you regain your strength. And she’ll teach you and family members how to care for you once home care is over.”

* Rather than saying “Look, we think you really need help,” say “We want to help you take care of yourself.”

* “Emphasizing that a physician has recommended home health care can also be helpful.”

* When meeting resistance from a senior, say “Tell me more. What are you concerned about?”

The full article is copied below.

Robin

—————————-

khn.org/news/some-seniors-just-want-to-be-left-alone-which-can-lead-to-problems/

Navigating Aging
Some Seniors Just Want To Be Left Alone, Which Can Lead To Problems
By Judith Graham
Kaiser Health News
June 15, 2017

The 84-year-old man who had suffered a mini-stroke was insistent as he spoke to a social worker about being discharged from the hospital: He didn’t want anyone coming into his home, and he didn’t think he needed any help.

So the social worker canceled an order for home health care services. And the patient went back to his apartment without plans for follow-up care in place.

When his daughter, Lisa Winstel, found out what had happened she was furious. She’d spent a lot of time trying to convince her father that a few weeks of help at home was a good idea. And she’d asked the social worker to be in touch if there were any problems.

Similar scenarios occur surprisingly often: As many as 28 percent of patients offered home health care when they’re being discharged from a hospital — mostly older adults — say “no” to those services, according to a new report.

Understanding why this happens and what can be done about it is important — part of getting smarter about getting older.

Refusing home health care after a hospitalization puts patients at risk of a difficult, incomplete or slower-than-anticipated recovery. Without these services, older adults’ odds of being readmitted to the hospital within 30 or 60 days double, according to one study.

Why, then, do seniors, resist getting this assistance?

“There are a lot of misperceptions about what home health care is,” said Carol Levine, director of the United Hospital Fund’s Families and Health Care Project, a sponsor of the new report.

Under Medicare, home health care services are available to older adults who are homebound and need intermittent skilled care from a nurse, a physical therapist or a speech therapist, among other medical providers.

Typically, these services last four to six weeks after a hospitalization, with a nurse visiting several times a week. Some patients receive them for much longer.

Many seniors and caregivers confuse home health care with “home care” delivered by aides who help people shower or get dressed or who cook, clean and serve as a companion. The two types of services are not the same: Home health care is delivered by medical professionals; home care is not. Nor is home care covered by Medicare, for the most part.

This was the mistake Winstel’s father made. He thought he was being offered an aide who would come to his apartment every day for several hours. “I don’t want a babysitter,” he complained to Winstel, chief operating officer of the Caregiver Action Network.

Like many other seniors, this older man was proud of living on his own and didn’t want to become dependent on anyone.

“Older adults are quite concerned about their independence, and they worry that this might be the first step in someone trying to take that away,” said Dr. Leslie Kernisan, a San Francisco geriatrician and creator of the website Better Health While Aging.

Other reasons for refusals: Seniors see their homes as sanctums, and they don’t want strangers invading their privacy. They think they’ve been getting along just fine and have unrealistic expectations of what recovering from a hospitalization will entail.

Or there are circumstances at home — perhaps hoarding, perhaps physical neglect — that an older adult doesn’t want someone to see. Or the patient’s cognition is compromised and he doesn’t understand his needs or limitations. Or cost is a concern.

Robert Rosati, vice president of research and quality at Visiting Nurse Association Health Group, New Jersey’s largest private home health care provider, said about 6 percent of seniors who’ve agreed to receive home health care from his organization after a hospitalization end up refusing services.

Often, a breakdown in communication is responsible. Patients haven’t been told, in clear and concrete terms, which services would be provided, by whom, for how long, how much it would cost and what the expected benefit would be. So, they don’t understand what they’re getting into, prompting resistance, Rosati said.

Kathy Bowles, director of the Center for Home Care Policy & Research at the Visiting Nurse Service of New York, suggests a plain-language, positive way to convey this information. For example: “A nurse will check your medications and make sure they’re all in order. She’ll assess if you need physical therapy to help you regain your strength. And she’ll teach you and family members how to care for you once home care is over.”

“A lot of resistance arises from pride,” said Bowles, also a professor of nursing excellence at the University of Pennsylvania. “The conversation has to change from ‘Look, we think you really need help,’ to ‘We want to help you take care of yourself.’ ”

Emphasizing that a physician has recommended home health care can also be helpful. “In my experience, if a doctor says ‘I’d like a nurse to come see you and check that you’re feeling better,’ people are fairly responsive,” Kernisan said.

Instead of arguing with an older adult who says “I don’t want any assistance,” try to follow up by asking “Tell me more. What are you concerned about?” Kernisan suggested. “People really want to feel listened to and validated, not lectured to.”

This isn’t to suggest that persuading an older adult to accept unwanted help is easy. It’s not.

Last year, Winstel’s father had a medical device implanted in his spine to relieve pain from spinal stenosis — an outpatient procedure. Once again, he declined postoperative help.

Two days later, Winstel got a phone call from her dad, who had collapsed and couldn’t get up from the floor. Winstel said she’d call 911. “No, I don’t want someone coming in and finding me like this,” her father insisted. “You have to come.”

Later, at the hospital, doctors diagnosed an adverse reaction to medication and a surgical site infection on her father’s back. “He lives alone. He can’t reach back there. He wasn’t caring for the wound properly,” Winstel explained.

Extensive, heated conversations followed, during which her father insisted he was never going to change. “For him, living independently carries risks, and he’s willing to accept those risks,” Winstel said.

She hopes the new report on seniors refusing home health care will jump-start a conversation about how to bring caregivers into the process and how recommendations should be conveyed. “As the daughter of someone who has refused care, understanding that this is something lots of people go through makes me feel a little less crazy,” Winstel said.

KHN’s coverage related to aging & improving care of older adults is supported by The John A. Hartford Foundation.

“Anti-Tau Drugs for PSP Move into Phase II”

There’s not much new here from this report from last week’s Movement Disorder Society conference in Vancouver.  This report focuses on two anti-tau drugs being studied in PSP — one from AbbVie and one from Bristol-Myers Squibb.  The BMS drug was recently licensed to Biogen.  Both drugs proved safe in phase I studies, and both have moved into phase II trials.

Tau is the protein involved in PSP and CBD.  It’s one of two proteins involved in Alzheimer’s.

Here’s a link to the report:  (you have to register — no charge to do so — at Medpage Today to read the article)

https://www.medpagetoday.com/meetingcoverage/mds/65883

Meeting Coverage > MDS
Anti-Tau Drugs for PSP Move into Phase II
But phase I study of one agent pulled from presentation
by Kristina Fiore, Deputy Managing Editor, MedPage Today
June 08, 2017