“Dementia patients may die sooner if family caregivers are mentally stressed”

This news article is a description of UC Berkeley research into the “high stakes of caregiver stress.”

According to researchers, “[patients] with dementia may actually die sooner if their family caregivers are mentally stressed. … [Compared] to patients who were cared for by relatives in fairly good mental health, patients tended by family members in poor mental health died, on average, about 14 months sooner.”

“While the study does not provide definitive causal or directional evidence for the earlier death of patients whose caregivers are in poor mental health, ‘it highlights the mutual influence both parties’ mental and physical states have on one another, and the extraordinarily high stakes that are involved,'” the lead researcher said.

“The study notes that poor mental health in caregivers can affect patients’ lives in a variety of ways. It can reduce the quality of patient care by raising the risk of neglect or abuse, weaken the patients’ immune systems by compromising social bonds between the caregiver and patient, or transmit negative emotions directly to patients through a phenomenon known as emotion contagion, in which one person in a relationship absorbs the emotional responses of the other.”

Mental health issues include depression, anxiety, social isolation and frustration.

The full article can be found here:


Mind & Body, Research, Science & Environment
Dementia patients may die sooner if family caregivers are mentally stressed
By Yasmin Anwar, Media Relations
Berkeley News
June 26, 2017




July 2017 Parkinson’s Support Group Meetings – Guest Speakers – NorCal + Central CA

Here’s a list of guest speakers at many Northern California and Central California Parkinson’s Disease (PD) support group meetings for July 2017.

With my Brain Support Network atypical parkinsonism (DLB, PSP, MSA, CBD) hat on, these meetings are especially appealing to me (because of the guest speakers or topics) BUT remember that these are PD support group meetings:

* Lodi, Monday, 7/3: a neurologist is speaking on Parkinson’s and essential tremor. I know nothing about this neurologist but it seems to be a unique opportunity to hear a neurologist speak in Lodi.

* Soquel, Wednesday, 7/5: physical therapist addresses practical solutions to daily challenges

* Yuba City, Monday, 7/10: social worker talks about the importance of sleep for caregivers. Hopefully everyone in this area knows about the Del Oro Caregiver Resource Center. If not, please attend the talk just to learn about their services.

* Bakersfield, Tuesday, 7/11: fitness instructor demonstrating exercises and yoga

* Turlock, Wednesday, 7/12: social worker describes coping skills for dealing with Parkinson’s (for both those with a diagnosis and caregivers). Certainly many of these coping skills will be applicable to those in Brain Support Network.

* Palo Alto/Avenidas, Wednesday, 7/12: a palliative care social worker and hospice nurse will be addressing palliative care and hospice at home for those with neurological disorders (not just Parkinson’s). Many in the Brain Support Network group apply for palliative care. Come learn about what this is!

* Walnut Creek, Saturday, 7/15: movement disorder specialist Salima Brillman, MD, will be talking about the diagnosis and treatment of Parkinson’s. She is very familiar with the disorders in our group.

* Sacramento/Arden Arcade, Thursday, 7/20: an excellent physical therapist addresses physical therapy for PD. She may be familiar with the disorders in our group.

Generally, I recommend driving no more than 30 minutes to attend any of these meetings. If you attend a meeting and learn anything, please share with me so that I can share with others!

Do you need to know the support group meeting location, day/time, contact info, and how to RSVP if required? Please refer to the Stanford Parkinson’s website for all Northern and Central California support groups:


As always, I’ve deleted the deep brain stimulation-related talks.


Monday, 7/3, 10-11am
Guest Speaker: Mohammad Kazmi, MD, neurologist, Lodi
Memorial Hospital, Lodi
Topic: Parkinson’s Disease and Essential Tremor
RSVP?: No.


Soquel (Santa Cruz County)
Wednesday, 7/5, 1-2:30pm
Guest Speaker: Ruby Straehley, PT, physical therapist
Topic: Practical solutions to everyday challenges facing those with Parkinson’s
RSVP?: No.


Yuba City (Tri-Counties)
Monday, 7/10, 1-2pm
Guest Speaker: Dorene Fanning, LCSW, family consultant, Del Oro
Caregiver Resource Center
Topic: Insights into challenges and the importance of sleep for caregivers
RSVP?: No.


Tuesday, 7/11, 2-4pm
Guest Speaker: Deb McCormack, Bakersfield Mind & Body Studio
Topic: Exercises and yoga for PD
RSVP?: Yes to group leaders Linda Feist, 661-304-9227, or Bill
Burgemaster, 661-343-2707


Pacific Grove (Monterey County)
Tuesday, 7/11, 3-4:30pm
Program: Discussion groups – people with Parkinson’s and care partners
RSVP?: No.


Davis – regular and caregivers groups together
Wednesday, 7/12, 12:45-2:15pm (special day/time for July)
Guest Speaker: Marg Bartosek
Topic: Experiential presentation of Feldenkrais awareness through movement
RSVP?: No.


Wednesday, 7/12, 1-2pm
Guest Speaker: Nancy Neufled Silva, PhD, LCSW, counselor, Turlock
Topic: Coping skills in dealing with PD for patients and caregivers
RSVP?: No.


Palo Alto/Avenidas
Wednesday, 7/12, 2-3:30pm
Guest Speakers: Libby Hagman, RN, clinical outreach coordinator, and Anthony Lupian, MSW, Transitions program coordinator, Mission Hospice and Home Care, San Mateo
Topic: Palliative care, hospice at home, and hospice house for Parkinson’s – recommended services and what’s new
RSVP?: No.


Sonoma/Vintage House
Thursday, 7/13, 10-11am
Guest Speaker: Margot Schaal, certified Feldenkrais practitioner
Topic: Feldenkrais
RSVP?: No.


Walnut Creek (Mt. Diablo)
Saturday, 7/15, 9am-noon (speaker 10:45am-11:45am)
Guest Speaker: Salima Brillman, MD, movement disorder specialist, The
Parkinson’s Institute, Sunnyvale
Topic: Diagnosis and treatment of Parkinson’s
RSVP?: No.


Elk Grove
Wednesday, 7/19, 10-11:30am
Guest Speaker: Christy Adams, RN, MPH, trauma prevention coordinator,
UC Davis
Topic: A matter of balance
RSVP?: No.


Thursday, 7/20, 10am-noon
Guest Speaker: Lisa Clawson, LVN, HealthSouth Rehabilitation, Modesto
Topic: Rehab services for PD
RSVP?: No.


Sacramento/Arden Arcade
Thursday, 7/20, 10am-noon
Guest Speaker: Christine Shade, DPT, physical therapist, Kaiser Roseville
Topic: Physical therapy and outdoor exercises for PD
RSVP?: No.


Mill Valley (Marin County)
Friday, 7/28, 1-3pm (guest speaker 1-2pm)
Guest Speaker: James Nevin, Sr., attorney
Topic: Estate planning and end of life issues
RSVP?: No.


“Moving to a New Place” – chapter 16 of “Caregiver Helpbook”

A course called “Powerful Tools for Caregivers” was developed by an organization in Portland.  You can read general info about the self-care education program for family caregivers at powerfultoolsforcaregivers.org.

As part of the course, class participants receive a copy of a book titled “The Caregiver Helpbook.”  Brain Support Network volunteer Denise Dagan is reading the book and will be sharing the highlights, for most chapters.  If you’d like far more detail that Denise’s summaries allow as well as access to the book’s terrific worksheets, note that the book is available for purchase in both English and Spanish at powerfultoolsforcaregivers.org.

Chapter 16 focuses on moving to a new place.  The necessity of moving into a facility may occur with little or no warning (as with a fall where a bone is broken), but when possible, planning for placement is best done BEFORE the need arises.  Often, as care needs increase, family caregivers and in-home services are not be able to keep up with care demands.  Learning about different types of facilities and visiting available options eases the stress of decision-making when care in a facility is actually required.

Here’s Denise’s report on chapter 16.


Denise’s Notes for

Chapter 16 – Moving to a New Place
The Caregiver Helpbook

Begin with a realistic assessment of the care receiver’s need.  Anticipating future needs is wise, so the care receiver doesn’t have to be moved often from one level of care to another.  As you’re evaluating options try to maintain as much dignity and independence for the care receiver as possible.  Be sure to discuss options with the care receiver, if possible, before making a final decision.

Housing and Care Options:

Shared Housing is for someone who is still very able, but who can no longer care or pay for their own home alone.  The arrangement may be two people in like circumstances sharing one home with all expenses and chores divided equally, like typical roommates.  Alternately, the homeowner may share their house in exchange for cooking, laundry, home maintenance, etc..  Some faith-based organizations sponsor large homes where several people share space.

Moving to a Family Member’s Home involves much to consider:
– How much of a disruption to the family will this be?  Will a spouse, children, or pets feel displaced?
– Does the care receiver have to leave his/her hometown, involving new doctors, dentist, pharmacist, friends, etc.?
– Will the care receiver require 24-hour supervision?
– Will relief be available so the caregiver can have time off?
– What is the comfort level of all concerned in regard to personal care such as bathing and toileting?
– Are there unresolved issues such as strained relationships, past abuse, neglect, alcoholism, or divorce?
– Will the care receiver be able to have some of his/her own furnishings and other familiar items?
Despite the challenges this arrangement can be very rewarding and create closer relationships.

Retirement Living Facilities come in many shapes and sizes.  The goal is to maintain independence.  The set up may be individual apartments or small homes.  Typical services offered include transportation, congregate meals, maid service, and planned social activities.  Minimal medical care can often be arranged for acute, temporary issues.  Residents purchase their home and the selling price fluctuates with the real estate market.

Residential Care and Assisted Living Facilities are for those who cannot completely care for themselves.  They are a blend of retirement living and personal care.  There is usually 24-hour supervision, assistance with personal care needs, medication monitoring, congregate meals, housekeeping services, and an emergency call system in each residential unit.  Registered nurses and skilled care can be provided on a temporary basis by outside home healthcare agencies.  The monthly rent depends on size of the unit and the amount of services needed.

Foster Homes or Board and Care Homes vary from state to state.  Typically, they house 5-6 people.  Some of these homes have a family that takes in and cares for people; others are staffed by hired, live-in caregivers.  Meals, laundry, and personal care are provided.  Skilled care can be brought in.

Nursing Home Care typically serves 20+ residents and offers several levels of care.
Two common levels of care are:
Intermediate or Custodial Care for those needing 24-hour care along with room and board, some personal care, medication management and activities.
Skilled Nursing Care is for a person requiring much more complicated care and needing regular registered nurse supervision, injections, IV feedings, catheter care, PT, OT, or speech therapy.
This level of care is where Medicare, some health insurance plans and long-term care insurance will pay (with some limitations.

Alternatives to Nursing Home Care:

Medicare and Medicaid currently (copyright 2013) offer limited access to nursing home alternatives.  The programs are:

The Program of All-Inclusive Care for the Elderly (PACE) is a benefit under both Medicare and Medicaid for people certified to require skilled care, but who wish to remain at home.  Participants receive comprehensive medical and social services from teams of health professionals who develop an individualized care plan.  PACE receives a fixed monthly payment per enrollee from Medicare and Medicaid, regardless of the services an enrollee may need.  Enrollees may also pay a monthly premium, depending on their eligibility for Medicare and Medicaid.

A Social Managed Care Plan provides the full range of Medicare benefits offered by standard managed care plans, along with additional services, including:
– Care coordination
– Prescribed drugs
– Chronic care benefits covering short term nursing home care
– A range of home or community based services, such as:
personal care services, adult care care or respite care, medical transportation, other services like eyeglasses, hearing aids, and dental care.

These plans offer the full range of medical benefits offered by standard managed care plans + chronic care/extended care.  Membership offers other health benefits that are not provided through Medicare alone or most other senior health plans.  As of late 2005, only four Social Managed Care Plans are participating in Medicare and each Social Managed Care Plan has eligibility criteria with different premiums and co-pays.  Contact Medicare’s Personal Plan Finder for details.

Questions to Ask:

Assessing and Choosing Housing Options involves asking the right questions.  Page 194 has an extensive list of basic question.  Depending on the type of facility and types of services needed, additional specific questions will be necessary.

This is a similar list from AARP:

Transitioning to the New Place:

Feelings run strong in this situation for both the care receiver and caregiver.  The care receiver may feel:
– Abandoned and rejected
– A loss of privacy, freedom and space
– Angry at self and others
– Ashamed due to dependency
– A loss of financial security because of impending costs of care
– Depressed
– Confused upon entering new surroundings and routines
These feelings should be acknowledged.  The losses are monumental.

The caregiver may feel:
– Failure they cannot continue giving care at home
– Apprehension about care not being given properly or not given in the way the care receiver prefers.
– Resentment that care costs so much, especially if there is no third party reimbursement.
– Relief that the burden of day to day care is lifted.
– Confusion about what to do with the care receiver’s home and possessions.

Settling into the New Place:
– The family are still caregivers
– Get acquainted with staff & volunteers.  Visit at different times to become familiar with various shift workers.
– Visit during meal times to observe the food, how it is served and if the care receiver is eating.
– Pay careful attention to the care receiver’s mood and behavior.
– Help the care receiver become involved with activities
– Ask the staff what they need from you.  Show appreciation for their work.
– Occasionally take gifts to the care receiver.
– Take old friends to visit.
– Take your loved one on outings, if possible.
– If the facility has a family council, get involved.

There is a list of resources at the end of the chapter including AARP, Family Caregiver Alliance, Area Agencies on Aging, and more.

“What to Do When Loved Ones Won’t Admit Their Memory Loss” (WSJ)

This post may be of interest to those dealing with dementia and the person with dementia refuses to see a doctor or is unable to see his/her own dementia.

The Wall Street Journal (wsj.com) isn’t a newspaper I often read but I do like the articles written by Dr. Marc Agronin, a geriatric psychiatrist. This article in last week’s paper is about what “to do when loved ones won’t admit their memory loss.”

Here’s a short excerpt:

“This denial of illness itself is a telltale sign of an evolving dementia such as Alzheimer’s disease, in which a person’s insight is often an early casualty. Anosognosia is the formal medical term for this condition, and it is also seen after certain types of strokes. It can also be fueled by delusional thinking, depression, mania, or the effects of medications or other substances. Such denial can lead to physical, mental, financial or legal harm when these individuals with diminished or distorted capabilities refuse necessary evaluations and treatments, or insist on managing their own finances or engaging in risky behaviors such as driving.”

Here’s a link to the full article:


The Experts | Health
What to Do When Loved Ones Won’t Admit Their Memory Loss
By Marc Agronin
Jun 29, 2017 10:30 am ET
The Wall Street Journal


“Hiring In-Home Help” – chapter 15 of “Caregiver Helpbook”

A course called “Powerful Tools for Caregivers” was developed by an organization in Portland. You can read general info about the self-care education program for family caregivers at powerfultoolsforcaregivers.org.

As part of the course, class participants receive a copy of a book titled “The Caregiver Helpbook.” Brain Support Network volunteer Denise Dagan is reading the book and will be sharing the highlights, for most chapters. If you’d like far more detail that Denise’s summaries allow as well as access to the book’s terrific worksheets, note that the book is available for purchase in both English and Spanish at powerfultoolsforcaregivers.org.

We’ve skipped chapters 10 through 14, as those didn’t really apply to many caregivers within Brain Support Network.

So, Denise is picking up with chapter 15, which focuses on hiring in-home help. As needs for the care receiver or the caregiver change, additional help may be necessary. Recognizing and accepting the need for outside help can be challenging for both the care receiver and caregiver.

Here’s Denise’s report on chapter 15.



Notes by Denise

The Caregiver Helpbook
Chapter 15 – Hiring In-Home Help

As needs for the care receiver or the caregiver change, additional help may be necessary. Recognizing and accepting the need for outside help can be challenging for both.
– Many people do not want strangers in their homes.
– Many feel that they alone will give the proper care to their family member.
– Perhaps care receivers want help from no one but a family member.
– Using day care centers to relieve both caregiver and care receiver may be viewed with skepticism.
– There are costs to consider as well as availability of and access to needed services.
– Sometimes ethnic, cultural or language barriers exist.

For awhile, services like home-delivered meals and medications, friendly visitors programs, or life-line emergency call services will fill the gaps. Eventually, as abilities decline, increased needs require more help in the home.

Start by realistically assessing the home care needs, including both those of the caregiver and care receiver. Consider:
– Household care: cleaning, laundry, cooking, and shopping.
– Financial care: paying bills, writing checks, maintaining insurance premiums, monitoring bank statements and credit cards.
– Personal care: bathing, dressing, eating, toileting, assisting with mobility.
– Health care: medication management, wound dressings, catheter care, giving injections, administering oxygen or providing rehabilitation services such as PT, OT or speech therapy.
– Emotional care: conversation, daily check-ins, companionship, transportation, visits to or from preferred faith communities.

You can get recommendations or referrals for in-home help through word-of-mouth, personal ads, churches, senior centers, registries of workers maintained by hospitals or private registries, aging offices, hospital discharge planners, social workers, and case managers.

There are two types of in-home care workers:
* Self-employed individuals who are hired directly by a family. Self-employed caregivers can be nurses, therapists, aides, homemakers, chore workers, or companions. In many states the last four categories are not required to be certified or meet government standards.
* People who work for home care agencies.


Hiring Self-Employed Caregivers

Be Prepared:
– Develop a job description, listing specific care needs, such as the need for lifting, dealing with a person who is confused or incontinent, pet care, etc.
– Decide what qualities and experience you want in a caregiver and if you can be flexible with those preferences.
– Know how much money you can spend.
– Have a written contract.
– State working hours and provisions regarding time off for illness or vacation.
– Define who in the family will be directing the care.
– Research and know legal, financial and tax issues. Determine who will be paying taxes, workers compensation, etc.
– State what type of notice is required if the worker quits or the care receiver no longer needs services.

Sample questions to ask the prospective caregiver:
– What is your caregiving experience?
– Are you bonded?
– Are you comfortable with me running a criminal background check on you?
– What are your expectations if I hire you?
– What classes or training have you had in caregiving?
– Why did you leave your last job?
– What do you like and dislike about home care?
– Can you provide three references from past or current clients?
– Is your license current? (as it relates to healthcare professionals)


Types of Agencies:

– Home care agencies prepare meals, assist with bathing, dressing, housekeeping, and sometimes shopping and transportation. The agency hires, trains and supervises their employees plus manages all payroll and labor law issues. Some states require these agencies to be licensed.

– Private Duty and Staffing Agencies are generally nursing agencies that provide nurses aides, homemakers and/or companions. The agency hires and is responsible for the care provided. A few private insurance plans may pay for private duty staffing, but they are quite rare. Sometimes, Medicaid and Veterans’ Services will fund this type of care. Medicare does not pay for these services.

– Home Health Care Agencies provide skilled nursing, PT, OT, speech pathology, social workers, and home health aides for personal care. They hire, supervise, and are totally responsible for their employees salaries, benefits, and caregiving standards. The majority are Medicare-certified, so Medicare will pay for their services. In addition to Medicare coverage, Medicaid, VA Services and numerous other health insurance plans, plus some long-term healthcare plans fund this type of care.

Home health care must be ordered by a physician and the patient must require skilled care such as injections, wound care, IV feedings, or certain therapies. In addition, the care must be delivered on an intermittent or part-time basis and the care receiver must be homebound during the period the agency is under contract. As soon as the care receiver no longer requires this type of care, Medicare and most insurers will cease coverage.

– Hospice Care Agencies are for the terminally ill who choose to stop curative treatment and focus on palliative care. Hospice care seeks to manage symptoms to provide comfort. A physician’s order is needed and he/she must certify that life expectancy is six months or less. If the person lives longer the physician can repeatedly re-certify to continue care.

Hospice is a fully funded Medicare benefit covering all medications hospital stays and equipment needed for management of symptoms caused by the terminal diagnosis. Many private insurance plans also cover hospice care, and the hospice philosophy is that services are provided regardless of ability to pay. Hospice also continues bereavement services, counseling, and support groups for the family for at least 13 months after the care receiver dies.


Comparing the Choices

There are numerous issues when considering whether to hire self-employed caregivers or to work though an agency. Obviously, those delivering the care must be qualified to meet the needs of the care receiver and caregiver for a positive and situation.

The table on page 179 lists some of the pros and cons of each type of care. It is adapted from the Family Caregiver Alliance’s Fact Sheet: Hiring In-Home Help (www.caregiver.org/hiring-home-help), which has further specifics on hiring in-home help. I highly recommend reading through it, especially before hiring self-employed caregivers.


Webinar on hallucinations and delusions in LBD, June 28th

The Lewy Body Dementia Association (lbda.org) is hosting a webinar this Wednesday, June 28th at 11am California time on hallucinations and delusions in Lewy body dementia (LBD).   “Lewy body dementia” is a term that includes Parkinson’s Disease Dementia and Dementia with Lewy Bodies.

The featured speaker is Jim Galvin, MD, a neurologist who is an expert on LBD.  There is no charge to attend.  Details below.

Updated as of June 30th:  Brain Support Network posted our notes to the webinar (including the Q&A session) here:





LBDU Webinar:
The Reality of LBD – Hallucinations & Delusions & How to Manage Them
Wednesday, June 28, 2017
2:00 pm Eastern Time

James E. Galvin, MD, MPH
Professor of Integrated Medical Science
Associate Dean for Clinical Research
Charles E. Schmidt College of Medicine
Florida Atlantic University

Seeing things that aren’t there and/or holding firmly to beliefs that aren’t real – these symptoms of vivid hallucinations and delusions are the reality that haunts those suffering with Lewy body dementia (LBD) – and their caregivers. Yet, LBD makes patients sensitive to medications that are typically used to manage these vivid hallucinations and delusions. LBD requires a careful and conservative approach to managing these upsetting symptoms.

Join LBDU and Dr. James E. Galvin of the Charles E. Schmidt College of Medicine at Florida Atlantic University for a free, informative webinar on hallucinations and delusions in LBD. Dr. Galvin will discuss current strategies to manage hallucinations and delusions in LBD. He also will share information about ongoing research and clinical trials.


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:


The Science of Lewy Body Dementia
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’s Notes from

The Science of Lewy Body Dementia
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:


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



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

On June 22nd, the Lewy Body Dementia Association (lbda.org) hosted a good one-hour webinar on sleep problems in Lewy Body Dementia (LBD).  This post provides the Brain Support Network notes about the webinar.

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

Note that the presenter sometimes uses the term Dementia with Lewy Bodies.  “Lewy body dementia” is a term that includes both DLB and Parkinson’s Disease Dementia.

My detailed notes from the webinar (including the question-and-answer session) are below.

The presentation is here:

The webinar recording is here:
(Note: there’s a problem with the slides for the first eight minutes or so.)



Robin’s Notes from

LBDU Webinar: Sleep Issues in LBD
June 22, 2017

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

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.

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.

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.

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.

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.