Comprehensive Approach to DLB – Notes from Webinar for Healthcare Professionals

In December 2016, the Lewy Body Dementia Association ( hosted a one-hour webinar with Brad Boeve, MD, behavioral neurologist at Mayo Rochester, on the topic of management of Dementia with Lewy Bodies. Note that Dr. Boeve’s presentation was tailored to healthcare professionals.

Dr. Boeve detailed the pathology, neurotransmitters, six symptom groups (cognitive, sleep, autonomic, senseory, motor, and neuro-psychiatric), medications, disease progression, and current research. The webinar ended with a short question-and-answer period.

The webinar was recorded and the video is available on the LBDA’s youtube site:

Comprehensive Approach to DLB Management
Speaker: Brad Boeve, MD
LBDA Webinar, December 5, 2016

Note that Dr. Boeve uses the term Dementia with Lewy Bodies (DLB) throughout his talk. DLB and Parkinson’s Disease Dementia (PDD) are part of the spectrum of Lewy Body Dementia (LBD).

I watched the webinar, and thought it was terrific.

In my opinion, the best graphic is the busy slide shown at the 35:33 time marker. It lists “features” (symptoms) such as cognitive impairment, neuro-psychiatric features, parkinsonism, etc. And it lists medication classes such as AChEIs, memantime, SSRIs, etc. Dr. Boeve indicates whether there is optimism or caution about each medication class for each symptom.

Brain Support Network volunteer Denise Dagan took notes during the webinar but she thinks it’s faster if everyone listens to the webinar! I’ve copied her notes below.



Denise’s Summary of

Comprehensive Approach to DLB Management
Speaker: Brad Boeve, MD
LBDA Webinar, December 5, 2016

Dr. Bradley F. Boeve, MD, started with an overview of Dementia with Lewy Bodies (DLB): Lewy bodies are mis-folded alpha synuclein protein. In DLB, they are found in the brain, brain stem, spinal cord and, in some people, the retina, heart, intestines, bladder, sex organs. They affect nerve-cell structures throughout the body. There are no FDA-approved medications to treat DLB.

This ven diagram is a good visual of how symptoms overlap and, therefore, the complexity of treatment.

[Editor’s note: see webinar!]

Dr. Boeve asks DLB patients and caregivers to prioritize the top three most troublesome issues they seek to change at each appointment. When they resolve #1 to a satisfactory degree, #2 often moves up to the #1 position and, together they keep working through symptom relief, rather than tackling everything at once and confusing what’s a symptom and what’s a medication side-effect.

Brain-Behavior Relationships:

Dr. Boeve spoke with brain diagrams about these neurotransmitters and the part of the brain in which they are typically active. In DLB, they find the cells in these areas are living, but for the most part, are not working properly, so medications are helpful to support functioning.

He then went through each symptom group in detail with corresponding treatment options. General notes for each symptom group are above the charts, while notes on specific symptoms are in the ’Notes’ column of each chart.

Cognitive symptoms:

Cognitive symptoms are primarily the result of depletion of acetylcholine. Reductions in other brain chemicals contributes to cognitive impairment, as well as some degree of neuron cell loss.

Start with education & counseling to understanding what’s at the root of these symptoms. Non-medication approaches like, cognitive rehabilitation or occupational therapy (OT).

Neurophychiatric issues:

No medication is needed unless hallucinations are frightening, upsetting, or leading to delusions.

NEVER USE HALDOL, THORAZINE, MELLARIL, and others in this class of drugs.

Motor issues:

Start with physical therapy (PT), gentle exercise, dance, a personal trainer at the YMCA, etc. – as long as balance is okay.

Treating Autonomic Dysfunction

This chart from Dr. Boeve shows several groups of prescription medications and the symptom groups they are often prescribed to treat. Because medications tend to have side-effects (some serious), the chart uses a color scale with those medications having the greatest effectiveness and few ill-effects in dark green and those with the least effectiveness and most ill-effects in orange. Your doctor should have all this information, but its a good visual.

[Editor’s note: see webinar!]

Best advice is to start slow, add one at a time, gradually adjust dose and evaluate the benefit against whether it is making something else worse.

The bright side is that if you try something and you don’t see a benefit, back off that one, change course, try another with the same caution.

It’s worth the effort.

He then went on to talk about the progression of the disease, the direction of research and, finally, questions & answers.

Progression of DLB can be 1-2 years or 10-15, or more, years. No idea why the range is so variable.

Current medications treat symptoms, but none show impact on rate of progression.

Research into Rx to slow progression, delay the onset so person dies before developing symptoms, or prevent DLB, altogether. Dr. Boeve believes medications to slow progression or delay onset will be available in the next 3-5 years. Biggest obstacle to research is lack of clinical trial participants, so get involved, of you can.

“Prodromal DLB” is defined as having early features of DLB


Q: Nuplazid?
A: Nuplazid is a new FDA-approved Rx for hallucinations & delusions in Parkinson’s disease. No evidence into the efficacy, safety, tolerability for people w/DLB. Currently, insurances are not covering this, so very expensive.

Q: When is it reasonable to consider discontinuation of cholinesterase inhibitors?
A: No right or wrong way to proceed. Most people, in later stages of illness, have no neurons making acetycholine so there is little effectiveness of the medication. Some people have increased cognitive impairment or hallucinations so doctors are inclined to maintain Rx to avoid the few who have negative effect of stopping the medication because there is no ill effects from taking it.

Q: Marijuana?
A: No research because illegal so no FDA approval. Medical marijuana prescription to treat pain in this doctor’s experience was ineffective, but no data pro or con.

Q: Pain management for arthritis, etc. when over the counter isn’t helping?
A: Ask your neurologist for prescription strength non-steroidal anti-inflammatories, other prescription with opioid effects. Use non-opioids first, then SNRIs have some pain modulating properties. Work with your doctor and keep trying!

Q: What’s in the pipeline with regard to monoclonal antibodies?
A: Monoclonal antibodies directed toward mis-folded proteins is a leading area of research for all age-related degeneration diseases. Phase I & II trials currently, but in the next 1-3 years will be in phase III trials. Challenge is that companies working on parkinsonisms find Parkinson’s disease patients easiest to have access to, so not as much research directed to DLB.

Q: Are seizures common? Are they part of DLB? What to do if they happen?
A: Relatively uncommon (less than 10% have one, or more) but disturbing to CGs and injuries can happen. Medications often have cognitive side effects, so if it is an isolated incident your doctor is unlikely to medicate, but if seizures are regular they will prescribe something, depending on the person’s medical history.

Q: Does the prevalence of lewy bodies in the gut help to understand DLB?
A: Current thinking is that alpha synuclein changes begin around the nasal cavity and along the brain stem from nerves coming from the stomach. Could it be a virus, toxin, or something ingested that starts the process of eventual changes in the brain stem. Avoiding this, if they could find what it is, would prevent infection, if the theory is accurate. Currently NO idea what that could even be!

Q: What are the milestones of the stages of DLB?
A: In recent research, MRI scans show if there is not atrophy in the brain, progression could be slower, but predicting course or progression is difficult, if not impossible.

Q: Is loss of speech communication related to muscle control or cognitive degeneration?
A: The cause is probably both. Use speech therapist because there are physical impairments that can be compensated for with training. Motor control could improve with a dopamine agent.