Overview of LBD Symptoms and Treatment – Webinar Notes

Though this webinar from mid-February was titled “Lewy Body Dementia: The Importance of Comprehensive Care and Support,” it’s really an overview of LBD symptoms and treatments.

Brain Support Network volunteer Denise Dagan said that the highlight of the webinar was that one of the speakers, Robert Bowles, has Lewy Body Dementia.  She said:  “Even though he didn’t speak much, he had a lot to say about what he needs from those around him and how he cares for himself.”

We previously posted about Robert’s blog.  See:


What I liked about the webinar was that challenges were presented and strategies offered to cope with those challenges.  Also, the webinar gave a good (but fast) overview of LBD symptoms with Robert chiming in every so often as to his experience with certain symptoms.

The webinar organizer was the National Alzheimer’s and Dementia Resource Center (nadrc.acl.gov), a US government center.  The speakers’ slides are available in PDF form on the NADRC’s website here:


And the webinar recording is available on youtube here:


By the way, the recording begins after some general info is given about webinar mechanics.  And the recording is “captioned” at the bottom of the youtube screen.  (Eventually you can learn to ignore the captioning.)

Denise’s extensive notes on the webinar are copied below.



Denise’s Notes from

Lewy Body Dementia: The Importance of Comprehensive Care and Support
February 15, 2017
Webinar Organizer:  NADRC
Host:  American Society on Aging

Angela Taylor, Lewy Body Dementia Association
Robert Bowles, LBD Advocate and Blogger (Living Beyond Diagnosis)

List 3 symptoms of Lewy Body Dementia (LBD)
2 ways it differs from Alzheimer’s
1 class of drugs to avoid

Dementia, the basics:
Dementia is a general term, not a disease.  The definition is cognitive decline severe enough to interfere with daily life.  It effects memory, language, executive function, judgement, attention, visuospatial skills, and has behavior symptoms.

LBD is the most mis-diagnosed form of dementia.  Often first diagnosed as Alzheimer’s, Parkinson’s disease (PD), or a psychiatric disorder.  The second most common form of dementia after Alzheimer’s.  Affects 1.4 million in the US, more men than women, and usually between 50-85 yrs old.

LBD includes both Parkinson’s Disease Dementia (PDD) and Dementia with Lewy Bodies (DLB).

Symptoms at a glance:
– cognitive issues progress to dementia
– parkinsonism (gait and balance difficulties, stiffness, rigidity, and sometimes tremor)
– behavior changes caused by psychosis
– sleep changes

Importance of early diagnosis:
– Comprehensive clinical care improves quality of life.  More responsiveness to Alzheimer’s medications early on.
– Minimize risks for certain medication side effects.  People with a diagnosis of LBD should not be given some antipsychotics, benzodiazepines, sedatives, narcotics, medications for PD, anesthesia, etc.

– LBD is complex to diagnose.  Presenting symptoms vary and aren’t always well reported.  It typically requires a specialist.
– Challenging to treat because of severe medication sensitivities.  There are no FDA-approved prescriptions.  Its all off-label use.
– It was not on the public’s radar until Robin Williams died, so people are in the learning curve even as the need to advocate for themselves.
– Medication sensitivities in LBD are unfamiliar to healthcare providers, especially emergency rooms (ER) and hospitals.  If you have an LBD diagnosis, ask for a neurology consult in the ER, especially if behavior symptoms are presenting themselves.

What to do:
– Self educate about LBD symptoms and treatment
– Prioritize the well-being of the caregiver.
– Connect to the LBD community
– Recognize and reduce stress
– Comprehensive clinical care improves quality of life for both the person with LBD and caregivers.
– You may need to educate your employer if you are still working.

Strategies for Daily Life
Cognitive symptoms: forgetfulness, problem solving/analytical thinking, planning/keeping track of sequences, reduced attention (quick fluctuations of attention), disorganized speech and conversation, loss of sense of direction or spatial relationships between objects (getting lost).

Robert says he notices mostly difficulty with processing of information as it is presented to him, and retrieval of information he needs to be able to respond.  Interactions with others needs to be slower for him to understand and formulate his reply.

Strategies to compensate:
– Alzheimer’s medications.  Remember, there are none developed for, or approved for LBD.
– Psychological counseling can help with frustration
– Slow down
– Rest (even when mentally tired)
– Adjust your expectations
– Learn to accept help

Robert would like people not to interrupt his train of thought and he needs time to understand you and process his response.

Fluctuation symptoms:
– Concentration and/or alertness
– Episodes of confusion
– Excessive daytime sleepiness

Robert reports emotional fluctuations, too.  He can start with a day feeling normal and happy.  After awhile he’ll start feeling giddy.  Then later brain fog will set in.  Eventually he’ll have a ‘sizzled brain’ feeling,  And, by the end of the day he’ll have fried brain followed by shut down.  This taught him to slow down and rest because it take 2-3 days to recover from fried brain.

Strategies to compensate:
– psycho-stimulants may help
– be flexible & patient
– schedule a nap

Parkinsonism symptoms:  rigidity or stiffness; shuffling walk; balance problems; tremor;
slowness of movement; decreased facial expression; change in posture; reduced voice volume and eventually problems swallowing

Robert reports also freezing, and moving backward or sideways unintentionally.

Strategies to compensate:
– Slow down to give brain time to sync with your intended movements so you go in the right direction and not fall while turning or going around corners
– Carbidopa-levodopa may help (but may worsen hallucinations)
– Physical therapy (PT)
– Occupational therapy (OT)
– Speech therapy
– Assess the environment for safety/falling hazards

Autonomic Dysfunction symptoms:
– Dizziness or fainting (orthostatic hypotension – OH)
– Temperature regulation
– Urinary incontinence & urgency
– Constipation
– Unexplained blackouts or transient loss of consciousness, unresponsiveness

Robert’s experience during his early mis-diagnosis of Neuro-cardiogenic Syncope was tons of medications.  Once properly diagnosed as OH, he was effectively treated by waist-high stockings

Strategies to compensate:
– Compression stockings, add salt to the diet, adequate hydration
– Dress in layers
– Use a toileting schedule, explore alternates to medications
– Stool softeners, added fiber
– Monitor and call your doctor with concerns

Sleep Disorders symptoms:
– Acting out dreams, sometimes resulting in injury (REM sleep behavior disorder – RBD)
– Insomnia
– Restless leg syndrome

Strategies to compensate:
– You must treat sleep or daytime cognition is worsened!
– Clonazepam or melatonin for RBD
– Assess injury risks.  Move bedside tables farther from the bed, put mats or a mattress on the floor beside the bed, etc. to reduce injury risk.
– Find a balance with naps in the daytime so you sleep at night
– Eliminate caffeine after dinner

Behavior & Mood symptoms:
– Hallucinations (audio and/or visual).
– Delusions
– Depression
– Apathy
– Anxiety

Robert says to consider the emotional implications when hallucinations happen.

Strategies to compensate:
– Cholinesterase inhibitors are part of the long-term treatment strategy
– Accept their reality – don’t try to rationalize & reason with them.
– Respond to their emotions, not the hallucination
– Redirect their attention when they are reassured & emotionally not upset
– Consult the physician if behavior suddenly worsens, because it may be something else (over tired, over stimulated, a urinary tract or other infection)

Assessing & Treating Acute Psychosis:
– Assess for pain, infection, other medical causes, re-evaluate med list
– Use cholinesterase inhibitors as part of the long-term treatment strategy
– Review, reduce, eliminate select medications
– Assess the environment
– Use non-pharmacological methods
– Consider use of an antidepressant
– Use atypical antipsychotic medications cautiously and monitor for side effects
– Do not use traditional antipsychotic medications!

How is LBD different from Alzheimer’s?
Different proteins cause the breakdown of normal functioning.  In Alzheimer’s, the initial symptom is mainly memory loss, but LBD has more and different initial symptoms.

How is LBD different from Parkinson’s disease?
It is the same protein causing the breakdown of normal functioning.  Initial symptom presentation may be the same or different. While cognition is sometimes affected in Parkinson’s disease, dementia is always a factor at the time of diagnosis in LBD.

Preparing for the Office Visit:
Advice for family:
– Be a good detective
– Use LBDA’s Comprehensive Symptom Checklist
– Be a strong advocate

Suggestions for Medical Provider:
– Speak to the patient directly
– Ask what the most bothersome symptoms are – prioritize treating them one by one
– Listen to the care giver for signs of depression and burnout
– Refer to PT, OT, and speech therapy early
– Be proactive with referral to hospice.  They can be very supportive of the entire family.  Life expectancy is 5-7yrs from diagnosis.

Driving & LBD:
– Increased risk of accidents due to:
– Reduced attention
– Slowed thinking
– Visuospatial skills reduced
– Visual hallucinations
– Motor changes: rigidity, slowed movements, myoclonic jerks

Strategies to get someone to stop driving:
The caregiver should trust their own judgement.  If they won’t drive with the person who has LBD, that person should stop driving.  Contact the medical provider in advance of an appointment if there are safety concerns.  Let the medical provider serve as ’the bad guy.’
Use friends, family and senior services to get around.  Don’t forget Uber & Lyft.   Gogograndparent.com will book them for you over the phone for a small fee.

Caring for the caregiver, especially if he/she has their own health issue, already.  They are at greater risk for:  depression, anxiety, isolation, self-doubt, and burnout.

Causes of that greater risk:
– LBD: disrupted sleep, behavioral changes, fluctuations, safety risks
– Delayed diagnosis, especially when the healthcare provider is unfamiliar with LBD
– Low pubic awareness delays diagnosis, and effective treatment.
– Reluctance to ask for and accept help
– No familiarity with community resources, like respite care.

Strategies to compensate:
– Make sure you have an emotional support network: friends, family, an LBD support group and online communities, counselors, church.  Have some fun!
– Early referral to community resources.  You’ve got to think, “Who’s going to step in if I suddenly become ill?”
– Self-education about LBD
– Embrace their role of patient advocate

Refer Families to Community Resources:
Educate families early about the availability of home health & the importance of respite.
Admission to a long term care facility is generally earlier than with Alzheimer’s, commonly because of the parkinsonism symptoms and behavioral changes.

Questions & Answers

How are people generally diagnosed?
Referral to Neurologist.  About 2/3 are done by specialists.  Usually, there is a full physical to rule out other causes in behavioral changes.  One scan detects change in dopamine producing cells  Its not conclusive, but results indicate the Parkinson’s/LBD realm is involved so points in right direction.  Autopsy is the only definitive form of diagnosis.

What were Robert’s first symptoms?
Robert was misdiagnosed for about 18 months.  He saw eight doctors, a counselor, and psychiatrist.  He was catatonic & passing out repeatedly.  In retrospect, symptoms probably started five years prior, during a knee replacement.  He was not ready for discharge and was hallucinating so he was re-admitted.  Two years before retiring his daughter suspected Alzheimer’s, then PD, but it was finally determined to be LBD.

Is there typically memory loss in LBD?
Memory is very good but processing information and retrieval is sometimes painfully slow.  Angela suspects people who have more difficulty with memory have a diagnosis of mixed dementia.  LBD had many faces.  That includes executive function failure or loss of attention that can appear to be memory loss.  For all of us, if you don’t use it, you lose it!

Really such a broad range of age (50-85yrs old) at diagnosis?
Usually more seniors, age 70-80 but diagnosis is often years after the first symptoms, so its hard to pin down when it started.

Strategies for behavioral symptoms, like gaining cooperation for showering, taking meds?
Pick your battles.  Few things must be done right now.  Leave meds for an hour and see where they are when you return.  Take yourself out of the equation and focus on the patient’s needs.