Lewy body dementia excerpts from curriculum on dementia for healthcare professionals

Someone in our local support group recently sent me this link to US Dept. of Health and Human Services’s curriculum for physicians (especially primary care physicians) and healthcare professionals (social workers, psychologists, pharmacists, emergency department staffs, dentists, etc.) on dementia. Though the web address includes the term “Alzheimer’s,” Lewy body dementia is well-covered in this curriculum:

Training Curriculum: Alzheimer’s Disease and Related Dementias
Health Resources and Services Administration (part of Dept of HHS)

Here are some excerpts on Lewy body dementia.



Overview of Mild Cognitive Impairment and Dementia for an Interprofessional Team (Module 1)

LBD Overview: Dementia with Lewy Bodies and Parkinson’s Disease Dementia
* Lewy body dementia (LBD) covers 2 related conditions—dementia with Lewy bodies (DLB) and Parkinson’s disease dementia (PDD).
* The defining features of LBD include motor Parkinsonism and cognitive impairments.
* Timing of dementia onset distinguishes between DLB and PDD.
* Diagnosis of LBD is challenging, even among experts.
* LBD, Parkinson’s disease (PD), and AD have many genetic similarities.
– However, differences in phenotypes have clinical implications.
– Location of Lewy bodies also influences disease manifestations.

LBD: Prevalence and Demographics
* Prevalence estimated at 1.3 million cases of LBD in the United States.
* Reportedly high number of underdiagnosed and frequently misdiagnosed cases.
* Difficult to estimate prevalence of DLB separately from PDD.
* Affects up to 5% of elderly people and up to 30% of all dementia cases.

DLB: Incidence and Prevalence
* Accounts for 4.2% of all community-diagnosed dementia, with incidence of 3.8% of new dementia cases.
* Affects more men than women and increases in incidence with age.
* Affects people at a younger age than does PDD.

PDD: Incidence and Prevalence
* PD affects about 1 million Americans.
* The percentage of people with PDD increases with increasing duration of PD. Approximately 80% of patients with PD will eventually develop PDD.
* 15–20% of persons with PD have MCI, which is associated with a poor quality of life and more severe motor symptoms.
* PD incidence increases with age.
* PD rates differ among different races.
* Incidence of PD is higher in specific ethnicities—Asians, Europeans, North Africans, North and South Americans—but highest among Ashkenazi Jews.

LBD/PDD Risk Factors
* In general, there are few risk factors for LBD: Male, older than age 60, and possible genetic predisposition.
* An important risk factor for PDD is duration of PD. Probability of developing PDD is approximately 80% with extended time since PD diagnosis.
* Other (nonspecific) risk factors for PDD include “atypical” Parkinsonian features, specific medical problems, non-motor symptoms, and rapid eye movement (REM) sleep behavior disorder (RBD).

LBD Symptoms
* The defining features of LBD include motor Parkinsonism and cognitive impairments.
* Clinical manifestations of DLB and PDD are initially different but become more similar as the disease progresses.
* Comparison of DLB versus AD found some similarities and numerous differences.
* Hallmark symptoms in early-stage PDD are movement related and also include:
– Cognitive impairments
– RBD, visuoperceptual changes, and depression
– However, memory intact throughout most of the stages of PDD.
* Greater impairments are associated with DLB than with PDD.

LBD Progression and Mortality
* The prodromal stage is characterized by dysautonomia, olfactory dysfunction, RBD, and psychiatric symptoms that are apparent years before onset of dementia (possibly decades earlier with DLB).
* Far less is known regarding progression of LBD compared with knowledge on Alzheimer’s disease. The Lewy Body Disease Association (LBDA) estimates an average duration of 5 to 7 years, with a range from 2 to 20 years.
* Survival time is shorter in DLB compared with Alzheimer’s disease.
* Men with DLB have increased mortality versus men with AD.

Diagnosing Dementia (Module 2)

Diagnosing Lewy Body Dementias (LBD)
* LBD syndromes include DLB and PDD. Both are aging-related dementias.
* Major distinction between DLB and PDD is the temporal sequence of appearance of clinical symptoms.
– DLB if dementia within 1 year after Parkinsonian symptoms
– PDD if dementia years after PD diagnosed/Parkinsonian symptoms

Distinguishing Between Lewy Body Dementias (LBD) and Alzheimer’s Disease
* Memory impairment not prominent feature of early LBD.
* Similar manifestations between LBD and late-stage AD
* DLB has similar mean age of onset as AD (around age 68) but PD has earlier onset.
* DLB has more rapid course of progression than AD or other dementias.

Understanding Early-Stage Dementia for an Interprofessional Team (Module 5)

Early-Stage Lewy Body Dementia (LBD): Overview
* LBD encompasses dementia with Lewy bodies (DLB) and Parkinson’s Disease Dementia (PDD).
* Defining features of LBD include motor Parkinsonism and cognitive impairments .
* DLB and PDD share many clinical and pathological similarities and are sometimes considered as different points on a spectrum.
– PDD is characterized by a period of pure motor symptoms first; cognitive symptoms develop more than a year after onset of movement problems.
– DLB occurs in older adults with Parkinsonism who develop dementia/cognitive symptoms within 1 year of motor symptoms and is often associated with a more severe course than PDD.
* LBD rate of decline is much faster and its survival time is shorter compared with AD.
* Greater impairments are associated with DLB than with PDD.

Early-Stage LBD: Clinical Manifestations
* Marked attentional and executive function disorders are present in LBD with significant cognitive fluctuations.
* Rapid eye movement (REM) behavioral disorder (RBD) is a sleep difficulty predominantly associated with LBD.
* Mild cognitive impairment (MCI) is present at the time of PD diagnosis in about one-third of individuals and in approximately half of all older adults afflicted with nondemented Parkinson’s disease after 5 years.
* Hallucinations are among the most common core features of DLB prior to the initial evaluation, followed by Parkinsonism and cognitive fluctuations.

LBD Versus Alzheimer’s Disease
LBD and Alzheimer’s disease have some similarities and numerous differences. Compared with persons with Alzheimer’s disease, persons with LBD are:
* More likely to have psychiatric symptoms and more functional impairments at time of diagnosis.
* More likely to have sleep disturbances, cognitive fluctuations, well-formed visual hallucinations, and muscle rigidity or Parkinsonian movement problems early in the disease.
* Likely to have pronounced visuospatial impairments in LBD that appear earlier in the disease course.
* More likely to have memory remains intact throughout most of the stages of PDD and LBD.
* More likely to have nonmotor behavioral symptoms.

General Strategies for Managing Behavioral and Psychological Symptoms of Dementia (BPSD)
* Patient engagement: contributes to greater sense of well-being
* Physical activity: can improve cognitive thinking, physical fitness, and mood; promising evidence that physical activity programs may improve ability to perform activities of daily living
* Communication: allow person living with dementia sufficient time to respond; use simple commands; use a calm voice; avoid harsh tones and negative words; offer no more than two simple choices; help person find appropriate words for self-expression; lightly touch the person to provide reassurance if upset
* Cognitive stimulation: evidence of some benefit to persons with early- to middle-stage dementia; stimulate thinking, concentration, and memory in social settings. Reminiscence therapy.
* Sensory stimulation: music therapy; white noise; art/craft therapy; bright light therapy
* Environmental changes: remove clutter; use labels and visual cues (signs, arrows pointing to bathroom)
* Task simplification: break tasks into simple sets; use cues (verbal, tactile) or prompts at each stage; create structured daily routines.
* Other interventions being investigated include animal-assisted therapies, massage, reflexology, herbal supplements, etc.

Understanding the Middle Stage of Dementia for the Interprofessional Team (Module 6)

Middle-Stage Lewy Body Dementia (LBD): Including DLB and PDD
* Cognitive deterioration less consistent versus Alzheimer’s disease.
* Manifestations: Impaired thinking; Parkinsonian movement impairments; Visual hallucinations; Deterioration of language skills; Sleep disorders; Behavioral/mood symptoms; Alterations in autonomic body functions

Behavioral and Psychological Symptoms of Dementia (BPSD)
* Common symptoms include mood disorders, sleep disorders, psychotic symptoms, and agitation.
* These are predominantly caused by progressive damage to brain.

The DICE (describe, investigate, create, evaluate) Approach
(see slides)

Sleep Disorders: LBD
* Sleep disturbances affect up to 90% persons with LBD.
* REM sleep behavior disorder (RBD): Is suggestive of LBD. Is predictive for neurodegeneration in Parkinson’s disease. May precede dementia and worsen prognosis.
* People with Parkinson’s disease may experience excessive daytime sleepiness.
* People with Parkinson’s disease‒MCI (mild cognitive impairment) have poorer sleep efficiency and more nontremor features of Parkinson’s disease.

Treating Sleep Disorders in Dementia
* Nonpharmacologic interventions:
– Sleep hygiene
– Sleep restriction therapy
– Cognitive behavioral therapy
– Light therapy
– Continuous positive airway pressure therapy (CPAP) for sleep apnea (OSA)
* Melatonin/melatonin agonists
* Medications (especially sedative-hypnotics or antipsychotics) can have significant adverse effects.

Psychotic Symptoms
* Psychotic symptoms: More prevalent in PLwD during the middle-and later stages of dementia.
* Delusions: False beliefs that persist despite consistent evidence to the contrary. Generally simple and nonbizarre.
* Hallucinations: Sensory experiences that cannot be verified by anyone except the person experiencing them.
* Most commonly visual or auditory in dementia.

Palliative and End-of-Life Care for Persons Living with Dementia (Module 12)

Behavioral and Psychological Symptoms of End-Stage Dementia
* Behavioral and psychological symptoms of dementia may become more prominent in advanced dementia.
* New onset or acute behavioral problems are usually indicative of a new problem.
* Agitation requires prompt attention and evaluation; management should begin with nonpharmacologic interventions.
* PLwD should be assessed for sleep problems, delirium, and pain.


Apathy – description and treatment

Brain Support Network volunteer Denise Dagan came across this article in a recent Parkinson’s Disease (PD) organization’s newsletter about apathy in PD.  Certainly apathy occurs in many of the disorders in the Brain Support Network community as well — especially progressive supranuclear palsy (PSP).  That’s why I’m sharing the article within our network.

These statements in the article caught Denise’s eye:

“Persons with apathy generally do not recognize the symptoms, so caregivers will need to bring it to medical attention. … It is important to assess for apathy because those with apathy are 2.5 times more likely to report poor quality of life in comparison to those without apathy. Apathy is also associated with more severe motor impairment. PD patients with apathy are less physically active and may not adhere to medical recommendations. Relationships may suffer as well since caregivers often experience more frustration and stress.”

The author of the article is Rosa Chuang, MD.  She may be familiar to some in our multiple system atrophy (MSA) group.  She used to practice at Stanford but is now in Seattle.

The article is copied below.




Apathy in Parkinson’s Disease
Parkinson’s Pathfinder (Newsletter by APDA Northwest)
Summer 2017
By Dr. Rosalind Chuang

Apathy is a common non-motor symptom of Parkinson’s disease but often times not recognized or commonly mistaken for depression. Some studies show that 30-40% of PD patients have apathy, but the frequency can range from 20-70%, depending on how patients are asked. It can occur at any stage of PD and can even occur before motor symptoms develop. It is important to assess for apathy because those with apathy are 2.5 times more likely to report poor quality of life in comparison to those without apathy. Apathy is also associated with more severe motor impairment. PD patients with apathy are less physically active and may not adhere to medical recommendations. Relationships may suffer as well since caregivers often experience more frustration and stress.


Apathy is defined as:
• Loss of motivation or lack of initiative
• Loss of pleasure
• Decreased goal directed behaviors
• Decreased goal directed cognitive activity
• Decreased interests and emotions (reduced display of emotions)


A common complaint from family and friends is that the PD patient just “sits around” or “doesn’t seem to care about anything.” Nothing gets done and a person often declines social activities if given a choice. This can be misinterpreted as fatigue, laziness, or lack of empathy/ uncaring.

Persons with apathy generally do not recognize the symptoms, so caregivers will need to bring it to medical attention. Medical providers may ask specific questions from the Starkstein apathy scale to determine apathy. Some questions on the scale include:

• Any interest in learning new things?
• Does anything interest you?
• Do you look for things to do?
• Are you concerned about your condition? Or unconcerned about many things?
• Does someone have to tell you what to do each day? Do you need a push to get started on things?
• Are you neither happy nor sad, just in between?

As you can see, these questions are similar to those to assess for depression, so sometimes it can be difficult to separate apathy from depression. Often times, patients can have both depression and apathy, but in ~10- 28% of time, patients can have apathy alone.


In both depression and apathy, a person may no longer enjoy things. However, someone with depression may endorse feeling “blue” or sad. Other “negative” symptoms of depression include inappropriate guilt, loss of appetite, loss of sleep, or thoughts of death. An apathetic person does not cry frequently or have suicidal thoughts.


It is important to evaluate if the symptoms are from apathy alone because it can affect treatment. If apathy is associated with depression or anxiety, treatment of co-morbid conditions can help reduce apathy. Sometimes isolated apathy can also respond to the SSRIs used to treat depression, but generally studies don’t show good response. Dopamine medications (levodopa or dopamine agonists) may also improve apathy. (In some patient who have undergone deep brain stimulation for PD, rapid withdrawal of their PD medications resulted in apathy.) In one trial, PD apathy responded to rivastigmine, a medication used for dementia, even though the patients did not actually have dementia.

For isolated apathy, I generally recommend non-pharmacologic treatment. These include:

• Write down at least 3 daily goals and 3 weekly goals. These goals can be physical, social, or thinking activities.
• Daily goals should be specific and can be reasonably achieved.
• Create a schedule: be specific when each task will should be accomplished.
• Review the written list at breakfast, lunch and dinner to remind yourself of the next goal.
• Cross off each task as you complete them.
• Say “yes” to at least one thing every day even if you don’t feel like it.
• Maintain routine: continue to do things you used to do, even if you don’t feel like it.
• Recall an activity that you used to enjoy and try to restart that activity.
• Exercise even if you don’t feel like it.
• Must leave the house at least once a day

Even though apathy is not as easily treated as the motor symptoms of PD or other non-motor symptoms such as depression, simply recognizing and understanding apathy is an important part of overall management of Parkinson’s disease.

‘Mom, I didn’t steal your dentures’: Coping when dementia turns to delusion

What a wonderful title for a newspaper article!

This article is about the hallucinations and delusions occurring in the context of dementia. The article specifically mentions Lewy body dementia but note that hallucinations and delusions can occur in moderate to severe Alzheimer’s Disease. (As you may know, the ONLY way at present to confirm a diagnosis is through brain donation. Let Brain Support Network help you make those advance arrangements for your loved one.)

In the article, a nurse gives four tips for managing problems:

* Maintaining social contact
* Good sleep hygiene
* Music to soothe agitation
* Providing choice

Here’s a link to the article:


‘Mom, I didn’t steal your dentures’: Coping when dementia turns to delusion
by Stacey Burling, Staff Writer
Updated: July 6, 2017 — 11:02 am EDT
The Philadelphia Inquirer



Five “ponderable thoughts” about grabbing “a second chance to live life”

The author of this short article draws a comparison with Ebenezer Scrooge who was “fortunate to get another chance in life despite a lifetime of despicable behavior towards others.”  The author encourages everyone facing a neurological diagnosis to grab “a second chance to live life and enjoy its splendor and beauty, whatever that is. No pity, no remorse, just joy that every moment should and will be spent making this life a better place then we got it.”

Though this reflection was written by a gentleman who lost his wife to Lewy Body Dementia in September 2016 (and posted to the Lewy Body Dementia Association website), there is nothing LBD-specific (or even dementia-specific) in the message.  And though this was written by a caregiver, the five “ponderable thoughts” apply to those with a neurological diagnosis.  The first and last thoughts are religious.




Excerpts from

The Crux of the Matter
by Alan Silberstein
Monday, January 9, 2017

[This article is] written as a reflection much like “A Christmas Carol” by Charles Dickens. Ebenezer Scrooge was fortunate to get another chance in life despite a lifetime of despicable behavior towards others and live it to the fullest greater good. This disease, for those lucky enough to be diagnosed early truly, has a second chance to live life and enjoy its splendor and beauty, whatever that is. No pity, no remorse, just joy that every moment should and will be spent making this life a better place then we got it.

So, here are a few ponderable thoughts:

First, if nothing else get spiritually centered. For me, that means be right in the Lord. I find peace and comfort in knowing that His light always shines down upon us. No matter what the situation God is in control. When the 23rd Psalms states “The Lord is my Shepherd, I shall not want…” I believe it means just that; everything I will need in this life is provided. The only thing the Lord wants me to take control of is my attitude. No matter how hard, my positive attitude is paramount. Each day brings new adventures – new highlights, new joys. The alternatives take way too much energy.

Second, learn from the past so you can plan for the future. This will allow you to live today. For example, how did raising your children prepare you for the next stage of grand parenting? Just like savings for retirement, did you learn anything from ‘a penny saved, is a penny earned’? We have a future; it is just a little unpredictable. Create a ‘bucket list’ of things you want to do. Then go do it with your family and/or significant other. Each time you check something off a new adventure starts. That is just plain excitement and happiness.

Third, take nothing for granted. You may have an awful diagnosis but let’s put it in perspective. There are things far worse, like if your spouse is near death and there is nothing other than prayer you can do to help. Open your eyes to your surroundings and see things that eluded your sight all these years. Then, relish in them.

Fourth, if you are young enough, plan for retirement and that ‘rainy day’. We are mortals and cannot predict the future, no matter how much we might like to. A proper plan today will lead to peace and security when the time comes. Believe me, it does come and not on your schedule.

Last, each day is precious. Treat it as such. We know what it is like to not know if there will be another. Each day do a random act of kindness. Despite our disease, paying it forward is healthy and makes one appreciate the glory provided to us by God.

Newspaper article on risk of antipsychotics in Lewy body dementia

This is a good article from a UK newspaper about the importance of proper diagnosis of dementia — Alzheimers, Lewy body dementia, or something else — because of the dangers of antipsychotics in LBD.

That being said, many in our local LBD caregiver support group do find value in atypical antipsychotics.

Here’s a link to the article:


Lewy body dementia: Thousands ‘at risk of injury or death’ due to inappropriate prescription of antipsychotics
Prescription of these drugs often worsens symptoms and has been found to increase the risk of death fourfold
Katie Forster, Health Correspondent
Thursday 6 July 2017 11:58 BST
The Independent (UK)


“Learning to live with Lewy” (Zionsville, Indiana)

Here’s another article from a local newspaper in Indiana about a couple coping with Lewy body dementia (LBD). The article features a two-minute video with Mary Milberger, the caregiver/spouse. The article notes: “From 2012 until November 2016, Tom [Milberger] was prescribed various medications from various doctors trying to help cure his symptoms of muscle freezing and loss of words. Yet, the medications were only fueling the disease. The medications were causing high levels of paranoia, on top of his already mounting symptoms.” Based on these problems, Mary came up with the LBD diagnosis.




Learning to live with Lewy
One disease alters life for local couple
By Tilly Marlatt
Times Sentinel (Zionsville, Indiana)
Jun 28, 2017

His hand visibly shakes as he struggles to take a sip from his glass of tea. Removing his glasses takes longer than normal. His bottom lip quivers as he struggles to find words. At the age of 71, tremors may be written off as a sign of old age, but for Tom Milberger of Zionsville they mean much more.

Tremors are just one symptom of Lewy Body Dementia. Hallucinations, loss of facial expressions, falling, and a lack of self-control are all other symptoms he has experienced since November 2016 when he was officially diagnosed with Lewy Body Dementia.

Milberger’s tremors are visible, but they are simply outward disguises of his real struggle. Lewy Body Dementia is similar to Alzheimer’s, but varies in the way that it impacts the whole brain, not just one part.

Milberger’s joking mannerism and broad smile doesn’t tell the full story of who he is or who he was. Milberger spent 20 years in the U.S. Army before becoming a project manager with T-Mobile. He became the first person to retire from the company in 2008, prior to the onset of LBD.

“I’m really good at giving hand shakes,” he jokes. With constant tremors caused by the Lewy Body Dementia, or LBD as it is often referenced, giving a handshake seems to be one of his few normal gestures remaining.

Most nursing homes throughout the state of Indiana will not accept a person with LBD.

Luckily, Tom Milberger has a dedicated caretaker by his side, his wife of 37 years, Mary.

She sits at their dinning room table with her iPad, and a yellow folder, overflowing with pamphlets, charts, and other resource guides for becoming educated on LBD. The disease is widely undiagnosed. Tom was undiagnosed at the onset, but his wife knew there was more going on. His early symptoms originated back in 2012, but Tom’s doctor failed to diagnose him.

“It’s very important that they [LBD patients] do get told this diagnosis, and not be labeled,” Mary Milberger said.

From 2012 until November 2016, Tom was prescribed various medications from various doctors trying to help cure his symptoms of muscle freezing and loss of words. Yet, the medications were only fueling the disease. The medications were causing high levels of paranoia, on top of his already mounting symptoms.

“He was hiding his wallet in his pillowcase at night,” Mary Milberger said. “That’s when I spent many nights on the wonderful iPad studying different symptoms. Only then did I realize he had every symptom of Lewy Body Dementia.”

The Milbergers then went to meet with Dr. Jared Brosch at the Indiana University School of Medicine. After meeting with Dr. Brosch, he told Mary Milberger that her “arm chair diagnosis was right,” as Milberger recounts. LBD patients can never have a definitive diagnosis. Only during autopsy can it be confirmed. Dr. Brosch is leading a study on patients with LBD, in which Tom Milberger is enrolled.


“How to Choose a Dementia Care Facility. Avoid My Mistakes.”

This is a very helpful article about choosing a dementia care facility.  The author is North Carolina-based Donna Plunkett St. Clair, whose husband was diagnosed with dementia in 2010 at age 59 and then with Lewy Body Dementia (LBD) in 2015 at age 65.  Donna shares the mistakes she made in choosing the wrong care facility…twice.

Here are the ten lessons Donna learned:

1.  Start investigating potential facilities NOW.
2.  Learn how your loved one’s care will change as he/she declines.
3.  Learn how “problems behaviors” are defined and ask about examples of what might lead to a resident being forced to leave the facility.
4.  Know what you can afford.
5.  Assess if the facility is using innovative designs.
6.  Ask if the resident can safely go outside.
7.  Ask about safety.
8.  Inquire about staffing levels, activities, and supervision for holidays, evenings, and weekends.
9.  Ask if residents are encouraged to stay hydrated, and are offered second helpings and snacks.
10.  Check service levels and quality when the facility least expects you.

These lessons are detailed in the article here:


How to Choose a Dementia Care Facility. Avoid My Mistakes.
By Donna Plunkett St. Clair
Posted to Lewy Body Dementia Canada
May 29, 2016



Webinar Notes – Hallucinations and delusions in LBD

On June 28th, the Lewy Body Dementia Association (lbda.org) hosted a good one-hour webinar on psychosis (hallucinations and delusions) in Lewy Body Dementia (LBD).  This post provides the Brain Support Network notes from the webinar….

LBD is an umbrella term that refers to two disorders — Parkinson’s Disease Dementia and Dementia with Lewy Bodies. A hallucination is seeing something that isn’t there. A delusion is having a fixed belief about something that isn’t correct. Unfortunately many with LBD are sensitive to antipsychotic medications that are used to manage psychosis.

The presenter, Dr. Jim Galvin, an LBD expert now at Florida Atlantic University, addressed these topics:
* short review of LBD symptoms
* neuropsychiatric symptoms of dementia
* hallucinations: what are most common?
* delusions: what are most common?
* challenges in neuropsychiatric assessment
* management of these symptoms, including non-pharmacological approach
* techniques and methods to respond to hallucinations
* managing other neuropsychiatric symptoms
* medication to treat psychosis (including medications in the pipeline)

Brain Support Network volunteer Denise Dagan took detailed notes from the webinar (including the question and answer session). See below. (Some time stamps are included if you want to watch the recording.)

Overall, Denise had these comments to share: “Dr. Galvin highlights challenges in determining whether the patient is dealing with hallucinations or delusions. He notes possible causes because without determining the cause there cannot be an effective treatment plan. He takes a conservative view, preferring non-pharmacological interventions whenever possible. He does approve of the use of anti-psychotics when safety of the patient or others is at risk. He gives examples of non-pharmacological approaches to dealing with these difficult behaviors, which drugs do work best, new drugs in the pipeline, and finally answers several good questions from those who attended the live webinar.”

The slides from the presentation are here:

The webinar recording is here:



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

Presenter: James E. Galvin, MD, MPH, Professor of Integrated Medical Science, Florida Atlantic University, [email protected]

Dr. Galvin began with a quick review of things associated with LBD, including:

Movement Problems:
– Bradykinesia (slowness in initiating movements)
– Rigidity
– Postural instability with repeated falls
– Slow, shuffling gait
– Myoclonus (quick, involuntary muscle jerks)
– Rare rest tremor but may have postural or action tremor

Cognitive Problems:
– Visual tracking and attention
– Visual-spatial and perceptual
– Verbal and motor initiation
– Clock drawing and block design (contraction)
– Timed attention tasks
– Executive tasks

Psychiatric/Behavioral Problems:
– Visual Hallucinations
– Hallucination in other modalities
– Delusions
– Depression
– Anxiety
– Apathy
– REM Sleep behavior disorder
– Cognitive fluctuations

Autonomic/Constitutional Problems:
– Loss of Smell
– Constipation
– Urinary incontinence
– Drooling
– Runny nose
– Dizziness and lightheaded
– Abnormal sweating
– Sexual dysfuntion
– Oily flaky skin

5:15 Chart depicting first symptoms and most disturbing symptoms reported by caregivers in the mild, moderate, and severe stages of LBD. Caregivers usually reported cognitive change as the first symptom presented as well as being the most disturbing symptom in every stage.

Neuropsychiatric Symptoms (NPS) of Dementia
– Also known as behavioral and psychiatric symptoms of dementia (BPSD)
– While cognitive impairment is the clinical hallmark of dementia, NPS often dominate both presentation and course.
– Present in >90% of patients at some point
– Etiology (why they occur) is not well understood, but is likely multifactorial (hard to pin to any one cause)

7:00 Chart showing that behavioral symptoms worsen as cognition declines. As function and cognition declines there is an increase in behavioral issues, resultant increased caregiver burden. Dementia patients who display marked behavioral disturbances in a given time frame are more likely to display them again in the future.

7:45 Interactive chart developed for Alzheimer’s showing a timeline of NPS in Dementia. The chart shows the appearance of symptoms in the months before and after a diagnosis of dementia (confirmed at autopsy). Symptoms charted are:
– Agitative symptoms (agitation, irritability, aggression)
– Depressive symptoms ( depression, social withdrawal, suicidal ideation, mood changes)
– Psychotic symptoms (paranoia, accusatory, delusions, hallucinations)
– Other symptoms (diurnal rhythm, anxiety, wandering, socially unacceptable and sexually inappropriate behaviors)

For Alzheimer’s patients, hallucinations were charted as appearing 18+ months after diagnosis, and delusions as appearing 6 months after diagnosis. Dr. Galvin moved hallucinations and delusions to around the time of diagnosis.

8:54 Venn diagram of these (potential) overlapping symptoms:
– Psychomotor Agitation (walking aimlessly, pacing, repetitive actions, dressing/undressing, sleep disturbances, etc)
– Aggression (aggressive resistance, physical aggression, verbal aggression)
– Psychosis (hallucinations, delusions, misidentifications)
– Sleep (REM sleep behavior disorder – RBD, Periodic limb movement disorder – PLMD)
– Depression (sad, tearful, hopeless, low self-esteem, anxiety, guilt)
– Apathy (withdrawn, lack of interest, amotivation)

– Abnormal perception without a physical stimulus (senses tell them something is there when there is no stimuli)
– Simple or complex: Simple is brief and fragmentary. Complex is detailed.

Sample Hallucinations in LBD
– Sense of presence: Sensation that someone is looking over your shoulder. Often a deceased relative or animal.
– Passage: Seeing something pass sideways in the peripheral of vision. Often people, previously owned pet, or shadows.
– Illusions: Misperception based on actual objects. Seeing a person when there is a coat on a hanger. Images emerging from wallpaper.

Complex Hallucination in LBD
– Predominantly visual in nature:
– They occur early in the course of the disease
– May not be frightening to patients
– Typically of little people (leprechaun), children, or furry animals
– May or may not have an auditory component (hearing the vision, as well as seeing it). May become frustrated if they talk to the vision, but it/they don’t talk back.
– Complex in nature (person can describe the whole scene)
– Less common are hearing, smelling, tasting, and feeling something that is not really there.

– False, fixed beliefs
– Maintained despite evidence to the contrary
– Several types in DLB
* Misidentification (most common)
* Paranoid (someone’s out to get you)
* Phantom boarder (other people living in the house)
* Abandonment (when the caregiver leaves the room, they have been left behind)

Common Delusions in LBD
* Capgras:  familiar people are thought to be identical or near-identical impostors.
* Fregoli:  familiar people are thought to be disguised as strangers.
* Othello:  extreme jealousy – usually spousal infidelity.
* Cotard:  belief that one does not actually exist or is dead.
* Reduplicative paramnesia:  a place simultaneously exist in two or more physical locations. They are home, but they want to go home.
* Mirrored self-identification:  not recognizing self in mirror
* Ekbom:  infestation by insects of parasites
* Diogenes:  self-neglect, domestic squalor (usually living alone)

Capgras Syndrome and Lewy Bodies: Characterized by the recurrent and transient belief that a person, usually someone closely related, has been replaced by an imposter. The imposter usually has features that are very similar to those of the original person, although subtle physical differences are used to differentiate the original person from the imposter.

17:50 Dr. Galvin examined a case series of 55 consecutive LBD patients (11 with Capgras, 44 without) and presented a slide showing the results of the study. 100% of patients with Capgras had hallucinations. Researchers found:
– Capgras patients experiences more visual hallucinations, had higher self-reports anxiety, and had worse behavioral ratings.
– Capgras patients less likely to tolerate cholinesterase inhibitors (Aricept, etc.).
– Capgras caregivers experienced more burden.
– Predictors of Capgras were visual hallucinations and anxiety.

Challenges in Neuropsychiatric Assessment:
* Clinician challenges are being unfamiliar with appropriate diagnostic criteria for these delusions, limited time for visits, and overlapping symptoms (depression and dementia) complicating the differential diagnosis.
* Patient challenges. They may not complain about hallucinations/delusions and may divert attention to more routine problems. May take offense at the suggestion that they have psychosis. Medical history may be unreliable because of their dementia and poor family recollection.
* Caregiver issues include needing help to recognize symptoms and being overwhelmed and stressed out.
* Neuropsychiatric symptoms may have multiple etiologies (causes). Primarily of which is the underlying disease (LBD) and its neuropathology and secondarily due to drug therapy or co-morbid conditions. There is the potential of drug-induced neuropsychiatric symptoms with current medications.

21:05 Chart showing the NPI Questionnaire (12 questions) to diagnose behavioral changes, followed by the charting of the frequency of these symptoms in various forms of dementia. By comparing answers to the questionnaire with the symptom frequency chart you get a visual of which type of dementia you are probably dealing with.

22:50 Other tools include the Healthy Aging Brain Care Monitor (HABC-M), which allows the caregiver to assess the emergence and severity of dementia-related symptoms, promote effective decision-making, drive individualized interventions, and monitor response to therapy. Caregiver chart symptoms over 5-6 months. Higher score represents greater impairment. This has proved consistent and useful.

Another tool is the Noise-Pareidolia Test shows patients images with and without faces and asks them to determine which they see. It distinguishes between Alzheimers, LBD, and healthy controls with 92% effectiveness. He gave a demonstration of the test.

Key Elements to Approach NPS
– Accurate characterization and contextualization (delusion, hallucination, or something else?)
– Examine underlying causes
– Devise treatment plan (specific to each patient)
– Avoid “knee-jerk” use of psychotropic medications (especially if medicines aren’t necessary)
– Behavior and environmental modifications should be tried first – with 3 exceptions:  suicide risk; psychosis causing harm or potential to cause harm; aggression causing risk
– Access intervention effectiveness. Not take this pill forever for the rest of your life.

Does This Symptom Need to Be Treated?
– As a general rule, most behaviors do not need medications
– If a medication is used, then the lowest possible dose for the shortest period of time is the best route
– In order to “trigger” use of a medication, one of the following three questions must be answered “YES”:
* Does the behavior interfere with patient care in a meaningful way?
* Does the behavior interfere with patient safety?
* Does the behavior interfere with someone else’s safety
– Example:  If the patient is chasing butterflies, no meds. If they chase them out the 10th story window, yes meds.
– If “NO” is the answer to all three, medications should NOT be used.

“Real-World” Management
– In many settings, NPS treated with antipsychotic medications
– No FDA-approved therapy for NPS
– ALL use is off-label = none was developed or approved for LBD
* Antipsychotics
* Antidepressants
* Mood stabilizers
* Benzodiazepines
* Cholinesterase inhibitors (Aricept, etc.)
* Memantine (Namenda)
– People with LBD are more likely to die taking these medications.

Non-Pharmacologic Management:
– Goals:  Create a routine; Provide stability; Avoid distractions

Suggestions to achieve goals:
— Provide a predictable and prompted routine
— Maintain familiar possessions and clothes
— Explain in simple language
— Simple tasks
— Provide a safe environment
— Use calendars, clocks, labels, and color coding
— Reduce stimulation and crowds
— Reduce clutter, noise and excess glare
— Consider an adult day program

Techniques and methods to respond to hallucinations
– Remove trigger, distract/redirect (if you find mirrors, news, etc. prompts mirrored self-identification, capgras, etc. remove them. ALWAYS distract or redirect after minimizing importance of hallucination.
– Caregiver education and support groups to learn what to expect and how to respond
– Adult day programs keep patients engaged/focused and minimize hallucination
– Psychotherapy techniques (memory retraining)
– Stimulation-oriented treatment (music, art, recreational or social therapies, exercise, dance, boxing)
– Montessori-based activities ( memory BINGO, group sorting)

Most famous non-pharmacological approach developed by Helen Kales, Geriatrician – DICE Approach:
* Describe – caregiver describes the behavior, how did it start, when did it start, what degree of distress does it cause
* Investigate – what is the cause of the behavior? UTI, poor sleep, new medication
* Create – a plan as a team to reduce symptoms and distress caused by behavior
* Evaluate – how is the plan working?

Another is: Management of Dementia-Related Behavior: A Practical Approach = DEMENTIA (pneumonic)
* Define target symptoms and severity
* Environmental factors addressed (triggers?)
* Medical illness revisited (new or worsening medical illness)
* Establish psychiatric diagnosis (hallucination, delusion, etc.)
* Non-pharmacological management (put something in practice and see if that helps)
* Targeted pharmacotherapy (if needed failing non-pharmacological approach)
* Initiate low and go slow (lowest dose and ramp up)
* Assess outcomes and re-evaluate (repeatedly)

Back to the Venn Diagram. Addressing behavioral symptoms non-pharmacologically:
* Apathy – give them activity-based therapy
* Agitation/Agression – employ cognitive/behavioral therapy, therapeutic touch, music therapy, etc.
* Psychosis – change meds., correct hearing & visual impairment, improve lighting, modify environment

34:08 Match treatment to symptom chart shows “negative” symptoms that respond to non-pharmacological interventions and “positive” symptoms that respond well to pharmacologic interventions.

Treatment of Psychosis. First, avoid “Classic” neuroleptic medications such as haloperidol (Haldol) due to increased risk of side effects, such as enhanced parkinsonism and neuroleptic malignant syndrome (potentially fatal).

Clozapine (Clozaril)
– RCT in PD psychosis demonstrated efficacy
– many side effects
– Not commonly used
– Can worsen motor-function

Quetiapine (Seroquel)
– Limited actual RCT evidence but anecdotal experience suggest effectively
– Less side effects than Clozapine
– Can worsen motor function
– Can worsen autonomic symptoms
– Used cautiously but less likely to cause side-effects like Clozapine

36:34 Pimavanserin (Nuplazid).
Chart demonstrating efficacy for:
– Reduced psychosis
– Reduced caregiver burden
– Improving nighttime sleep
– Improving daytime wakefulness
Expensive, but effective.

RVT-101 (Interprirdine) = new medication undergoing studies for LBD and Alzheimer’s.
– Increase amount of acetylcholine
– Inhibits acetylcholine receptor activity which reduces hallucinations
– Results should be available in 2018

Nelotanserin = another new medication undergoing studies for LBD specifically
– looking to improve visual hallucinations and RBD in DLB patients.
– still enrolling patients for these studies.

39:41  Summary
– Hallucinations and delusions are common in LBD
– New emergent symptoms require a medical evaluation
– Not all behaviors require medication
– Non-pharmacological approaches should be first line
– If starting a medication, know all there is to know about that medication
– Start at lowest dose, increase does slowly, constantly re-evaluate
– New medications are being tested that specifically target hallucinations in LBD


40:46  Question & Answer

Q: Mother with LBD rationalized or makes excuses about her symptoms. Is this a form of delusion?
A: All dementias are associated with anosognosia (impaired awareness of illness). It is more common in Alzheimer’s and less common in LBD. They don’t perceive the problem so its hard for you to convince them they have a problem. This is more of a perceptual problem than delusion. There’s no direct treatment, just reinforcement in the moment, sometimes every day.

Q: Can a person simultaneously have more than one type of delusion?
A: Yes. People with dementia can have multiple types of hallucinations and delusions, or none at all. That’s why each person needs an individualized treatment plan.

Q: Mother age 92 has LBD and has been sedate and on hospice but has began yelling but her intelligibility is nonexistent. Will medications help this?
A: Vocalizations are often a way to express an unmet need (anxiety, hungry, dirty, pain, depression, etc.) and are often not a full sentence. May be repeated. They do not respond to medications unless you sedate them. The key is to address unmet needs, distract and redirect to reduce vocalizations temporarily.

Q: Use of Nuplazid in DLB because it was approved for Parkinson’s. What is your experience using this in DLB and is there any data?
A: No data. Not a first-line drug. So expensive that it requires pre-approval from insurance companies. In his experience, his patients (10-15 people) have had good results, but not total elimination of symptoms.

Q: LBD non-drug intervention or clinical trials? Especially for West Coast?
A: LBDA website, but all clinical trials are registered at www.clinicaltrials.gov. Search for disease you are interested in and sort by state or type to find one you may want to participate in. This lists international studies (Canada), as well.

Q: How is it best to field concerns from the caregiver when medications cause greater frequency of hallucinations and delusions when treating MD is not listening to caregiver’s concerns?
A: Need to really find out why. It could be medications, but could also be drug-drug interactions, like Aricept and bladder medicine for incontinence. One raises acetylcholine, the other blocks it. What else is going on in their medical history, like a UTI. Work with the doctor to make sure he/she understands family concerns and determine what the problems is caused by.

Q: Swallowing issues in late LBD. Any safe treatments for aggression for someone who refuses to or can’t swallow?
A: Some meds are available as dissolvable or liquid form. Because of flavoring, patient may still resist. Older medicines may have intramuscular forms you can inject. Newer meds don’t usually come this way. Some could be put in tubing if they are being tube-fed.

Q: Any clinical trials in the pipeline for healthy adults, children or siblings of those who have had a family member die with LBD, or to be control in studies on LBD.
A: Yes, for Alzheimer’s and Parkinson’s disease, but he’s not familiar with any for LBD, specifically. We will learn a lot from the ongoing studies that can be applied to LBD, but no.

Q: Why multiple site studies are important as far as recruitment and numbers?
A: Single site studies have the advantage in that different measures are collected and samples are processed is very consistent, but the disadvantage is that test subjects tend to have uniform enrollees where the demographics don’t match other parts of the country very well. Multiple sites may have less uniformed data collection, but the population will be more heterogeneous and useful to the general populace.

Q: Mother has died, but was diagnosed mid-way through LBD with hallucinations and put on Seroquel but stopped when daughter found it has a black box (unapproved by FDA) warning. What do you think about black box warnings?
A: These meds were developed for use on schizophrenics, aged 18-40, so there have been no registered studies on older adults in any of these medications. There was one study called the CATIE-AD study on people with Alzheimer’s. They found various of these medications did help with psychosis, but not the course of the disease. Side effect profile in those who got the drug had more deaths compared to the placebo group with a 60% increased risk, mostly due to stroke or cardiovascular disease, which led to the black box warning. Families need to weigh the risk to the patient and caregiver’s health against the risk of using these meds.


Lewy Body Dementia: Journey of Nick (Aiken Standard)

This is an article by the co-leader of the Aiken, SC Lewy body dementia (LBD) caregivers support group in the local newspaper. The group’s name is “M’Aiken a Difference Lewy Body Dementia Support Group.” In the article, the group leader describes a bit about her husband Nick’s journey with LBD, provides an overview of LBD, and notes the value of caregiver support groups in helping members adjust to the “new normal in their lives.”


Lewy Body Dementia: Journey of Nick

By Nancy Sofge Martin, Facilitator, MADLBDSG
Aiken Standard, maturetimes
June 21, 2017

I started my journey with Nick After hearing about his Lewy Body Dementia diagnosis, I started to learn more about the diseases within the dementia spectrum and my caregiver journey began.

Dementia Umbrella Defined

The dementia umbrella is a way for us to have a mental picture as we understand the various dementia diseases. Dementia is the main term, and the dementia diseases fall in groups below this main term. Some examples of the diseases within this broad dementia spectrum are Alzheimer’s Dementia (AD), Lewy Body Dementia (LBD), Parkinson’s Disease (PD), Frontal Temporal Dementia (FTD). Keep in mind that there are Mixed Dementias (overlapping dementias) and all dementias are not AD. Dementia is quite challenging for family caregivers.


Symptoms may include significant memory loss, hallucinations, lost planning and problem solving abilities, fluctuating alertness and cognition, sleep disorders, balance and falling, language problems and mood changes, movement changes (walking slower with smaller steps and problems using hands and tremors), sense of direction and spatial issues, and severe drug sensitivities.

It generally takes around eighteen months to get a diagnosis because this dementia is either under-diagnosed or misdiagnosed. Fortunately, my husband, Nick Martin’s diagnosis came in about nine months. LBD is a diagnosis that affects all family members. As I was told early in my husband’s journey, “this disease is a hard one.” Of course, I was so overwhelmed with the sudden new normal as LBD took on a very fast progression of dementia, behavior issues, and physical movement symptoms. LBD has been described as Parkinson’s Disease (PD) on steroids.

Nick’s Journey

Nick, a big Clemson Tiger Fan, is a wonderful family man, who is always there for his friends and neighbors. Life was rounded with community activities by serving as the volunteer recreation director and a longtime school board member in his hometown of Blackville, SC. He worked for the State Department of Education and had a very full and happy life before “Lewy” proteins attacked the neurons in his brain and caused the symptoms listed above. Subtle LBD symptoms began prior to 2013 and following a couple of surgeries after other medical issues that year, I noticed that something was terrible wrong.

I was unfamiliar with LBD at the time of diagnosis, his neurologist immediately told me that this one had the potential to be very hard on the caregiver. Little did I know anything about the caregiving journey of LBD that I was beginning. I was an educator and truly not fully prepared for this part of our journey. Since this disease is on a fast train, I had to learn all I could for my role of caregiver and take care of managing his illness, as well as providing all household obligations in a short amount of time.

M’ Aiken A Difference Lewy Body Dementia Support Group

Our support group was started to honor Nick and to guide those caregivers experiencing a change from a NORMAL to a NEW NORMAL in their lives due to a dementia diagnosis. Patrice Tavernier and Linda Lucas came aboard, and their expertise and experience are the backbone of our group. DayBreak Adult Care Services sponsors our group, and we meet the third Tuesday of each month at 11:00 am in their Training and Outreach Center, 151 Lined Street SW, Aiken, SC 29803.

I soon learned that a caregiver must balance everything and the importance of not feeling guilty. Your mental and emotional state are extremely important as you fill the role of a primary caregiver. Is has been emphasized to me that a caregiver has to find respite opportunities and social outlets as the disease progresses. When others offer help, be open and accept it. Bring help into the home as needed to meet the daily demands of dementia care as you reserve your stamina to continue moving forward and protect your health. There is help out there! You are not alone! Caregiving is the hardest job that you will probably ever do.

“How to Stay Sane and Healthy” as a Caregiver

The “Transition Aging Parents” blog (transitionagingparents.com/blog) was started by Ms. Dale Carter of Indiana after she became a caregiver for her mother in 2009.  She began blogging to help adult children caregivers.  In 2014, Dale’s husband was diagnosed with Lewy Body Dementia (LBD).  Still, the focus of her blog remains helping caregivers, regardless of diagnosis.  (In fact, there are only three posts that mention LBD.)

Recently, Dale posted about “how to stay sane and healthy as a caregiver spouse.”  She offers six “timeless lessons,” including:

1- Recognize that you will ride an emotional roller-coaster.
2- We each can choose our response to the situation.
3- Recognize that each family member will process the situation differently and in their own time.
4- Ensure you build and maintain a circle of support for your loved one and for you.
5- Getting enough sleep, fitting in workouts, meditating, and taking time for yourself are vital to your physical and emotional health.
6- There is no right or wrong way to do things.

Most of the blog post is copied below.  Again, it applies to all caregivers, not just spouses.




How to Stay Sane and Healthy as a Caregiver Spouse
by Dale Carter
June 13, 2017
Transition Aging Parents

As caregiver spouse for my husband (with Parkinson’s and Lewy Body dementia),  I want to share a few of my key “lessons learned.”  I wrote this “still relevant” list in another blogpost 2 years ago.  Amazing how timeless these lessons are.

1.  As a caregiver, recognize that you will ride an emotional roller-coaster. There were moments of feeling blessed for receiving an early diagnosis and then times of despair as I realized that our future had changed forever.

2.  Recognize that while there may be no cure for a loved one’s diagnosis, we each can choose our response to the situation. I’ve always been an action-oriented advocate.  Know there is a time for that BUT there is also a time for just being present with your loved one.   There is great healing in your presence, even just sitting in silence.

3.  Certainly educate yourself and your family members about the illness and prognosis. But recognize that each family member will process the situation differently and in their own time.  My daughter told me she could not bring herself to read the info I sent her, but one night she watched a Netflix show, “The Boss”, in which the lead character has Lewy Body.  She told me she sat, riveted to the show, and finally was able to understand what was happening to her father.

4.  Ensure you build and maintain a circle of support for your loved one and for you. My husband’s “twice a week” CAREgiver is a vital part of his life.  He tells me that she patiently helps him, shares in his interests and even plays the piano for him.  As for me, a colleague convinced me to take a much needed birthday getaway weekend with a childhood friend while my son took my husband to see his sister. Sometimes it seems that all the planning to do special events is just too much trouble and expense, but it is critical for your well-being.

5.  One thing I struggled with even before being a caregiver was getting enough sleep and fitting in workouts. This is not just important.  It is vital to your physical and emotional health.  Set a bedtime and get at least 7 hours of sleep.  I choose to do my workout in early morning.  It doesn’t matter when you exercise, meditate or take time for yourself.  The key is actually doing it!

6.  And, finally, recognize you are on your own unique journey. There is no right or wrong way to do things.  So much is out of your control.  If you act out of love, compassion and the humility that you need others, you will be doing the best you can for your loved one and yourself.