Fascinating History Insight Observation Lewy Body Dementia

Lewy Body Dementia
Lewy Body Dementia

When dealing with, and trying to understand Lewy Body Dementia, it always helps if we can draw upon many different sources and experiences.

Below we have dug up a fascinating insight from times gone by, but nevertheless a very important piece of history concerning Lewy Body Dementia.

We think you will find this very informative and fascinating, as did we.

With many thanks to Jama Network

Mervyn Peake

Mervyn Peake (1911-1968) was an accomplished British artist, poet, novelist, and playwright. He was a prolific and talented illustrator and wrote hundreds of poems, 4 novels, and several plays.

His exceptional career was prematurely ended by a neurodegenerative illness variously ascribed to Alzheimer disease, Parkinson disease, or postencephalitic parkinsonism.

However, a detailed review of biographical accounts produces substantial evidence in support of a probable diagnosis of dementia with Lewy bodies, a clinical entity remaining undiagnosed outside specialty dementia clinics.

Peake developed signs of parkinsonism and insidious cognitive decline during his fifth decade. A breakdown in his writing style has frequently been cited as reflecting his encroaching dementia.

Visual hallucinations are portrayed in sketches, and together with paranoid delusions are apparent in poetry composed during his illness.

His deterioration was progressive and punctuated by well-described episodes of confusion and psychosis.

His occasional preservation of insight is poignantly captured in drawings of figures with dunce caps or pointed heads, often with expressions of fear and apprehension etched with an economy of strokes.

Peake spent his final years in various psychiatric institutions but continued to exhibit lucid intervals even late into his illness.

His tragic deterioration remained undiagnosed at the time, but in retrospect, his progressive dementia with parkinsonism, visual hallucinations, and marked cognitive fluctuations likely represents one of the earliest recognized historical cases of dementia with Lewy bodies.

Dementia with Lewy bodies (DLB) is estimated to account for 15% to 20% of cases of dementia, based on autopsy data1 and epidemiologic studies.2 Wider recognition of this disorder has emerged only recently, coinciding with descriptions published since the 1980s.3 To date, reports of prominent historical cases are lacking, although with increasing awareness, such cases are more likely to be recognized in retrospect.

A probable diagnosis is apparent in the neurobehavioral deterioration of accomplished British artist, poet, novelist, and playwright, Mervyn Peake (1911-1968), whose celebrated Gormenghast novels were recently adapted into a critically acclaimed television miniseries by the British Broadcasting Corporation.4 

Peake’s persistent attempts at artistic expression in the face of a relentless, cognitively devastating illness provide us with a unique and intensely personal account of a historical case of DLB.

Mervyn Peake was born in Kuling (Lushan), China, in 1911. His father, a British missionary physician, brought his family back to England in 1922. As a young man, Peake entered art school and first exhibited his work in 1931. He soon established a reputation as a talented illustrator. He was called up for military service in 1940, and while serving in the army, started work on his Gormenghast novels.

After the war, he was commissioned to document the aftermath of the conflict and completed a series of heartbreaking sketches of concentration camp survivors at Belsen. He continued to write and illustrate, producing many of his finest paintings, drawings, and poems during the late 1940s (Figure 1). He was much admired as an art instructor, and during this period also scripted several plays.5

These examples are taken from some of Mervyn Peake's earlier work, prior to the onset of cognitive decline. A, Self-portrait. Oil on canvas (National Portrait Gallery, London). B, Illustration for a 1949 edition of Robert Louis Stevenson's Treasure Island. Published with permission from the Mervyn Peake estate.

These examples are taken from some of Mervyn Peake’s earlier work, prior to the onset of cognitive decline. A, Self-portrait. Oil on canvas (National Portrait Gallery, London). B, Illustration for a 1949 edition of Robert Louis Stevenson’s Treasure Island. Published with permission from the Mervyn Peake estate.

Peake first showed signs of a mysterious neurodegenerative illness around 1956, developing signs of parkinsonism and symptoms of cognitive decline in his fifth decade.5 Perplexed biographers have alternately speculated diagnoses of Alzheimer disease,6 Parkinson disease,7 or postencephalitic parkinsonism5 after questioning a history of viral encephalitis6 or encephalitis lethargica.5 

The disintegration of Peake’s writing style has frequently been regarded as reflective of his encroaching dementia.7 He also suffered from bouts of depression, which influenced his later work. After a stressful period that culminated with a number of disastrous play reviews, his behavior started to become erratic, and his wife reported that he experienced hallucinations.8 

His deterioration was progressive, punctuated by well-described episodes of confusion and psychosis but relieved by intermittent lucid periods. He was ultimately diagnosed as having parkinsonism and “premature senility.”8

In 1960, neurosurgical approaches for Parkinson disease were being attempted, and Peake underwent one of these procedures in an effort to ameliorate his parkinsonian symptoms. The effects were disappointing.

As a last resort, an appointment was arranged with the preeminent British neurologist of the day, Sir Russel Brain, but he was likewise unable to assist the ailing artist. Peake spent the next several years of his life in various institutions, treated with neuroleptics and electroconvulsive therapy, until his death in 1968 at the age of 57 years.8 

His work has since drawn substantial critical acclaim and is presently the subject of increasing public interest. His influence on subsequent generations of artists and writers has been profound.

Dementia with lewy bodies

In 1912, Friederich Lewy described the presence of intracytoplasmic inclusion bodies in the dopaminergic neurons of the substantia nigra in patients with Parkinson disease.9 Lewy bodies in the midbrain are spherical, eosinophilic inclusions, differing slightly in appearance from those described in the neocortex.

Reports of cortical Lewy bodies were rare until new staining techniques for ubiquitin were introduced in the 1970s. The occurrence of cortical Lewy bodies in cases of dementia was firmly established by the 1980s.3 Antibodies to α-synuclein, which immunostain Lewy bodies, have since replaced the use of the ubiquitin stain, and DLB is now classified among the spectrum of diseases regarded as synucleinopathies.10

Consensus criteria for the diagnosis of DLB were published in 1996 and refined in 1999 (Table 1).11,12 The prospective sensitivity and specificity of the consensus criteria for DLB are reported at 0.83 and 0.95, respectively.13 Previous retrospective studies yielded comparable specificities (0.87-1.00) but lower sensitivities (0.22-0.89).14 

Hence, although the criteria might not identify every individual harboring the condition, there is high certainty of a diagnosis of DLB if the criteria are met.

Age at onset generally ranges from 50 to 83 years,15 although autopsy-verified cases have been documented in patients with initial symptoms at an age as young as 27 and 33 years.16 The mean survival time is usually comparable with that of Alzheimer disease.15

Consensus Criteria for a Diagnosis of Dementia With Lewy Bodies (DLB)11,12

Consensus Criteria for a Diagnosis of Dementia With Lewy Bodies (DLB)

Historical evidence

Peake’s progressive cognitive decline is apparent in his later work. His pronounced difficulties with attention and visuospatial ability are typical of DLB, in contrast with the more prominent decline in memory function observed in Alzheimer disease.11 Commencing with his later illustrations, one biographer observed that, “there is a coarseness of feeling, a lack of sympathy for the persons he portrays.”8

By 1958, his drawings were more caricaturelike and later became “geometric and then almost abstract”8(p219) in keeping with Peake’s inexorable deterioration of visuospatial function. In this respect, his case is comparable with those of Willem de Kooning17 and William Utermohlen,18 in whom similar changes were noted in artistic ability with advancement of probable Alzheimer disease, likely arising from involvement of posterior isocortical association areas, with resultant deterioration of visuospatial function.

Although problems with memory were apparent by 1960, Peake’s “attention span had become so short that he could no longer read a story and retain the idea for an illustration long enough to draw it.”8(p223)

Thus, both cognitive domains predominantly affected in DLB were especially involved. Conversely, a tenuous preservation of insight was captured in drawings of figures in dunce caps or with pointed heads, often with expressions of fear and apprehension etched with an economy of strokes (Figure 2A), distinguishing him from artists diagnosed as having probable Alzheimer disease.18

Sketches by Mervyn Peake made late in the course of his dementia. A, Figure with dunce cap, a repetitive theme. B, Animal-like floating creatures surround a tormented individual, drawn while Peake was suffering from visual hallucinations. Published with permission from the Mervyn Peake estate.

Sketches by Mervyn Peake made late in the course of his dementia. A, Figure with dunce cap, a repetitive theme. B, Animal-like floating creatures surround a tormented individual, drawn while Peake was suffering from visual hallucinations. Published with permission from the Mervyn Peake estate.

Peake’s parkinsonian signs and symptoms have been well documented in biographies.8 In his mid 40s, he developed shaking of the hands and was tentatively diagnosed as having Parkinson disease after evaluation at the National Hospital, Queen’s Square (London, England).5 

The shaking “spread to his legs as well as his hands” and exhibited “remorseless progression” over the years.8(p213) The beneficial effects of L-dopa in the management of Parkinson disease were not discovered until the 1960s, and so treatment in the preceding decade was limited to the use of anticholinergic medications and experimental surgical pallidotomy. Later photographs of Peake reveal the stooped posture and inscrutable expression characteristic of parkinsonism.

Peake was tormented by recurring visual hallucinations, the early development of which—soon after the onset of his other symptoms—is further suggestive of DLB. Many well-formed and detailed examples are evident in his sketches (Figure 2B). These hallucinations, together with the paranoid delusions he experienced while in the hospital, were incorporated into poetry composed during his institutionalization:

Other poems, perhaps indicating auditory as well as visual hallucinations, and letters to his wife reflecting his frightening delusions, are further discussed in a recent biography.5

By the time he entered his sixth decade, Peake “was with us only in flashes, and those flashes were often over before we had grasped what he had said, or could reply. Most of the time he sat in silence, head bowed.”20(p37) A remarkable example of the striking fluctuation in his mental status follows:

After dinner he was sitting humped on the sofa when suddenly he made a motion towards Maeve, and as she leaned over him he indicated that he wanted some paper and something to draw with. My wife produced a sheaf of quarto typing paper and placed a ball-point pen in his swollen hand. We went on talking while he sat with the sheaf of white paper on his knee. . . . Then I noticed that his hand had ceased its normal shaking, and that he was sitting upright with the paper held firmly, concentrating. For more than an hour, he seemed to lose touch with his illness altogether. He covered page after page with wonderful and preposterous beasts, leaping, snarling, laughing, cavorting. As soon as one was finished he turned to a fresh page and drew another. We self-consciously kept up our conversation, although all three of us were watching him in amazement. He appeared unaware of our presence. And then the spell was broken. He dropped the pen, and his hand began to shake again.”20(pp37-38)

This is a compelling description of a dramatic fluctuation in cognition and alertness, which is typical of DLB and not other forms of dementia, such as Alzheimer disease. There are abundant examples of similar observations in accounts of his illness.5,7,8

Several features supportive of a diagnosis of DLB are also apparent in biographical material of Peake’s neurobehavioral decline. Repeated falls were observed, as “his sense of balance would suddenly desert him, and he would lurch and fall against objects and people.”21(p204) Moreover, there is frequent reference to neuroleptic sensitivity, since “although the doctors gave him tranquilizers, the tremors in his hands and legs increased.”8(p218)

Thorazine and chlorpromazine were the most common neuroleptics used in the 1950s and 1960s. His wife often ironically observed that the medications doctors gave him only seemed to make him worse.8 One of his physicians also noted that some of the treatments “aggravated the parkinsonism, rather than improved it.”21 Worsening confusion and exacerbation of parkinsonism are common consequences of neuroleptic use in DLB.12,15

Peake’s symptoms developed at a younger age than most patients with DLB, although the duration of his illness was more in keeping with the diagnosis. Throughout his institutionalization, he was victim to systematized delusions and hallucinations.

His occasional bouts of depression intensified over time. In addition, rapid eye movement sleep behavior disorder may have been present, since Peake was plagued by nightmares and “a restless nervous energy that prevented him from sleeping at night.”8(p212) However, the published material does not allow for verification of this possibility.

Previous speculation has centered on the possibility that Peake suffered from postencephalitic parkinsonism,21 but such an explanation is dubious on several counts. The pandemic of von Economo encephalitis (encephalitis lethargica, or “sleeping sickness”), which was first described in 1916 and dwindled to obscurity by 1929, was associated with a syndrome of parkinsonism observed to manifest up to 4 or 5 years after the acute illness.

There is no reliable record of acute encephalitis in Peake, and by the 1940s, cases of postencephalitic parkinsonism had become exceedingly rare.22 Moreover, no instances of oculogyric crises or convulsive movements, dramatic features typical of postencephalitic parkinsonism, were ever reported to occur in Peake. Finally, progressive dementia was not a prominent part of the clinical picture in the postencephalitic syndrome, which was generally limited to chronic parkinsonian phenomena.22

Mervyn Peake’s deterioration was a mystery at the time, but in retrospect, his progressive neurobehavioral decline associated with parkinsonism, visual hallucinations, and cognitive fluctuations likely represents one of the earliest recognizable, and possibly best-documented, historical cases of DLB. There is abundant biographical evidence that he exhibited all of the core features (only 2 of which are required for a probable diagnosis of DLB), as well as most of the ancillary features supportive of the diagnosis.

The burgeoning popularity of Peake’s work serves as a testament to his brilliant expressions of imagination. That such a gifted artist succumbed to a dementing illness with a predilection for attention and visuospatial function is particularly tragic.

His later work stands as a unique and defiant record of his struggle with the disease. Recognition of the likely cause of his affliction as his popularity continues to grow may ultimately serve to heighten awareness of this distinct and devastating form of dementia.Article Information

Corresponding author and reprints: Demetrios J. Sahlas, MD, MSc, FRCP(C), Department of Medicine, Division of Neurology, University of Toronto, Sunnybrook and Women’s College Health Sciences Centre, 2075 Bayview Ave, A4 21, Toronto, Ontario, M4N 3M5, Canada (e-mail: dj.sahlas@sw.ca).

Dr Sahlas is supported by a joint personnel award from the Canadian Institutes of Health Research, Ottawa, Ontario, and the Heart and Stroke Foundation of Canada, Ottawa.

I would like to thank Sebastian Peake, the artist’s son, and the Peake family for their interest as well as for their kind permission to reproduce the poetry and artwork contained herein.

The helpful staff at the Merril Collection, Toronto Public Library, is gratefully acknowledged. Special thanks are extended to Sandra E. Black, MD, for a critical review of the manuscript.References1.

Weiner MF Dementia associated with Lewy bodies.  Arch Neurol.1999;56:1441-1442.Google Scholar2.Holmes  CCairns  NLantos  P  et al Validity of current clinical criteria for Alzheimer’s disease, vascular dementia and dementia with Lewy bodies.  

Br J Psychiatry.1999;174:45-50.Google Scholar3.Kosaka  KYoshimura  MIkeda  KBudka  H Diffuse type of Lewy body disease.  Clin Neuropathol.1984;3:185-192.Google Scholar4.Not Available Gormenghast [videotape].  London, England: British Broadcasting Corp; 2000.5.Yorke  M Mervyn Peake: My Eyes Mint Gold: A Life.  New York, NY: The Overlook Press; 2002:258-259, 286-289.6.Jones  L A reverie of bone.  New Worlds.1967;151:51-54.Google Scholar7.Batchelor  J Mervyn Peake: A Biographical and Critical Exploration. 

London, England: Gerald Duckworth & Co Ltd; 1974.8.Winnington  GP Vast Alchemies.  London, England: Peter Owen Publishers; 2000.9.Lewy  FH Paralysis agitans, I: pathologische anatomie.  In: Lewyandowsky  M, ed.  Hadbuch der Neurologie. Berlin, Germany: Springer; 1912:920-933.Google Scholar10.Galvin  JELee  VM-YTrojanowski  JQ Synucleinopathies.  Arch Neurol.2001;58:186-190.Google Scholar11.McKeith  IGGalasko  DKosaka  K  et al Consensus guidelines for the clinical and pathological diagnosis of dementia with Lewy bodies (DLB): report of the consortium on DLB international workshop.  

Neurology.1996;47:1113-1124.Google Scholar12.McKeith  IGPerry  EKPerry  RH Report on the second dementia with Lewy body international workshop: consortium on dementia with Lewy bodies.  Neurology.1999;53:902-905.Google Scholar13.McKeith  IGCalard  CGPerry  RH  et al Prospective validation of consensus criteria for the diagnosis of dementia with Lewy bodies.  Neurology.2000;54:1050-1058.Google Scholar14.McKeith  IGO’Brien  JTBallard  C Diagnosing dementia with Lewy bodies.  Lancet.1999;354:1227-1228.Google Scholar15.McKeith  IG Dementia with Lewy bodies.  

Br J Psychiatry.2002;180:144-147.Google Scholar16.Gibb  WRGEsiri  MMLees  AJ Clinical and pathological features of diffuse cortical Lewy body disease (Lewy body dementia).  Brain.1987;110:1131-1153.Google Scholar17.Espinel  CH de Kooning’s late colours and forms: dementia, creativity, and the healing power of art.  Lancet.1996;347:1096-1098.Google Scholar18.Crutch  SJIsaacs  RRossor  MN Some workmen can blame their tools: artistic change in an individual with Alzheimer’s disease.  Lancet.2001;357:2129-2133.Google Scholar19.

Peake  M A Reverie of Bone.  London, England: Bertram Rota; 1967.20.Mullins  E How many miles to Babylon?  Mervyn Peake Review.1985;19:37-81.Google Scholar21.Watney  J Mervyn Peake.  London, England: Michael Joseph; 1976.22.Dickman  MS von Economo encephalitis.  Arch Neurol.2001;58:1696-1698.Google Scholar

Signs Of LBD, Diagnosis Of Lewy Body Dementia, Plus Vaccine.

Lewy Body Dementia

Please see foot of this post below for info on research Lewy Body Dementia vaccine.

The word “dementia” describes a condition affecting a person’s memory and thinking that is a decline from how he or she used to function and that is severe enough to affect day-to-day life.

Alzheimer’s disease dementia and Lewy body dementia are the two most common types.

Lewy body dementia gets its name from the abnormal protein clumps that are seen on autopsies of the brains of people with Lewy body dementia.

The protein alpha-synuclein – a protein found in the brain, not one you eat – clumps into spheres called Lewy bodies which can be seen using a microscope.

These are named after F. H. Lewy, the person who first described them.

The diagnosis Lewy body dementia is an umbrella term that includes two different conditions: dementia with Lewy bodies and Parkinson’s disease dementia.

In dementia with Lewy bodies, a person develops memory and thinking problems before or at the same time as he or she develops movement problems that resemble Parkinson’s disease.

In Parkinson’s disease dementia, a person who has experienced Parkinson’s disease movement problems for years then also develops trouble with memory and thinking.

These two conditions share many of the same features.

In addition to memory and thinking problems and movement problems, people with these conditions can have fluctuations in their alertness and concentration, hallucinations and paranoia, acting out dreams during sleep (something called REM sleep behavior disorder), low blood pressure with standing, daytime sleepiness and depression, among other symptoms.

Diagnosis is important

Getting the correct diagnosis is critical for patients and families.

While no one wants to hear that they have a disease that currently can’t be cured, patients and families often feel relief that they finally have an explanation for what’s happening.

The diagnosis of Lewy body dementia is often missed due to lack of awareness by physicians, patients and families.

Even for people eventually receiving a diagnosis of Lewy body dementia, research shows their first diagnosis is commonly incorrect.

In that study, 26 percent of people later diagnosed with Lewy body dementia were first diagnosed with Alzheimer’s disease and 24 percent were given a psychiatric diagnosis like depression.

Knowing the correct diagnosis lets patients and families connect to resources such as the Lewy Body Dementia Association, an organization dedicated to helping people living with this disease.

The organization provides education on Lewy body dementia, helps patients and families know what to expect, links patients and families to support and resources and connects them to research opportunities.

Once a diagnosis is made, physicians can also suggest potentially helpful treatments.

Medications can include carbidopa/levodopa (Sinemet®), a drug that helps with slow movements, and cholinesterase inhibitors, which are drugs developed for Alzheimer’s disease that may also help people with Lewy body dementia.

Avenues for research

There is a great deal that we still need to learn about the Lewy body dementias.

Increasing research is a priority of the National Institutes of Health.

Earlier this year, experts published new criteria for the diagnosis of dementia with Lewy bodies, aiming to improve accurate diagnosis.

There are also currently multiple research studies trying to find drugs to help people with Lewy body dementias, including studies to investigate drugs hoped to improve thinkinghallucinations and walking.

For Parkinson’s disease dementia, a new drug called pimavanserin was approved by the Food and Drug Administration in 2016 to treat hallucinations. 

Vaccine Lewy Body Dementia

Current research studies are testing drugs hoped to improve memory and thinking.

Scientists also hope to learn more about the alpha-synuclein protein clumps in the Lewy body diseases.

Recent vaccine studies suggested that the body might be able to create antibodies against alpha-synuclein.

This could be the first step toward a vaccine to help people with Parkinson’s disease and dementia with Lewy bodies.

If effective, a vaccine would prompt the immune systems of people with these diseases to create antibodies to attack and clear the protein clumps.

With advances in diagnosis and treatment, there is reason for hope.

How To Manage Lewy Body Dementia Symptoms

Lewy Body Dementia UK


As carers we want to try and do as much as we can for our loved ones naturally, without using drugs.

Lewy body dementia is a complex disease that includes physical, cognitive, and behavioral symptoms.

The behavioral symptoms can be the most upsetting and difficult-to-manage parts of the disease. Hallucinations, delusions, aggression, agitation, apathy, depression, and anxiety are common.

Because antipsychotic drugs are especially dangerous for people with Lewy body and could make difficult symptoms even worse, it’s best to first try non-drug treatments before resorting to medication.

Non-drug treatments are also helpful in improving symptoms to potentially reduce medication dosage.

We share 10 non-drug ways to help manage and reduce the severity of Lewy body dementia symptoms.

These suggestions should only be used if the situation is safe. If anyone is in danger of physical harm, immediately get medical help.

1. Tolerate behavior that doesn’t cause harm, focus on reassurance and distraction
People with Lewy body dementia often experience hallucinations or delusions that cause strange behavior or false accusations.

But if their behavior isn’t aggressive or harmful, they don’t seem to have any physical pain or discomfort, and they’re not upset to an extreme degree, one solution is to tolerate the behavior and not try to convince them of our reality to stop the behavior.

Instead, respond to their emotions and concerns rather than the facts or exact words. Provide comfort as needed and assure them that they’re safe.

In these cases, the side effects of medication could be far worse than the hallucinations or delusions themselves.

2. Check for physical causes
Sometimes, new behavioral symptoms or a worsening of symptoms could be caused by physical pain or discomfort that the person isn’t able to verbally express or describe.

Common physical issues include severe arthritis, injury, fever, urinary tract infection (UTI)bed sores, and constipation. In some cases, simply being tired, needing to pee, or being hungry can also trigger negative behavior.

When physical pain is well treated, negative behavioral symptoms often decrease.

3. Check for medication side effects
Sometimes medications used to treat Lewy Body dementia symptoms or other common health conditions can increase behavioral problems.

For example, over-the-counter sleep aids, bladder control medications, and drugs used to treat the physical symptoms of Lewy Body (tremors, shuffling walk, stiffness in arms or legs) can cause confusion, agitation, hallucinations, and delusions.

And benzodiazepines, common sedative medications to treat anxiety, can cause increased anxiety or worsen cognitive function in people with Lewy Body dementia.

If your older adult is taking any of these medications, speak with their doctor to find out if there are alternatives that are less likely to affect people with Lewy Body, if it can be eliminated, or if the dose can be lowered.

4. Modify their environment
Clutter, noise, and crowds can contribute to the hallucinations and delusions that typically trigger behavioral challenges.

Reducing clutter and minimizing distracting noise, people, or activity can make it easier for someone with dementia to function, reduce their anxiety, and reduce the chance that their eyes will play tricks on them and cause them to become confused or upset about what they think they’re seeing.

5. Use kind, soothing responses to comfort and calm
Someone who has dementia is no longer able to process logic and reason the way we would. Keep them as calm and happy as possible by avoiding conflicts.

Assuming they’re not hurting themselves or others, this means going along with what they say, not correcting or arguing with them, and not quizzing them about what they remember.

If they’re agitated or concerned, validate their feelings and offer comfort through gentle hugs and engaging activities.

6. Create daily routines and keep tasks simple
Routine and simplicity both reduce the chances that they’ll get angry or agitated.

Having clear structure and consistent routine each day reduces uncertainty and confusion and creates a reassuring rhythm to life.

Break down everyday tasks into smaller steps to make them simpler and reduce frustration.

Overall, focusing on successes rather than pointing out failures (and making success possible) boosts self-esteem and positive feelings.

7. Encourage exercise and physical therapy
To help with the physical symptoms of Lewy body, physical therapy options include cardiovascular, strength, and flexibility exercises, as well as gait training.

Working on general physical fitness is also helpful.

Regular exercise also boosts mood, improves physical health, and often reduces aches and pains. All these factors contribute to reducing negative behavior.

8. Consider speech therapy for swallowing problems
If Lewy Body is causing problems with swallowing, that will interfere with nutrition and cause hunger. Neither is good for someone’s mood or health – and it’s natural get “hangry” (hungry + angry) when we’re too hungry.

If that’s happening, consider speech therapy.

Speech therapists teach techniques that make swallowing easier and safer. They also make recommendations on the types and consistency of food and drinks that help with swallowing.

9. Consider alternative therapies
There are a variety of therapies that may help both the person with Lewy Body as well as caregivers.

Occupational therapy may help someone with dementia maintain skills and improve independence and confidence.

Musicart, or can also reduce anxiety, improve mood, and give a sense of accomplishment.

Pet therapy, or using animals to improve moods and behaviors, boosts mood in many people. Caring for a pet, even if the pet is only visiting, can promote a sense of accomplishment and purpose.

Aromatherapy can boost mood and promote relaxation. Massage therapy can loosen stiff muscles, improve circulation, and promote relaxation.

Individual and family therapy or counseling can also be useful for learning strategies to manage emotional and behavioral symptoms. This can also help caregivers learn techniques to keep calm when conflicts come up.

10. Participate in caregiver support groups
Caregiver support groups have many benefits, including hearing from people in similar situations, being able to vent frustrations, and getting tried-and-true advice.

Getting support is essential for helping you stay as calm as possible in tough situations as well as for finding creative solutions to behavior challenges.

What to do if Lewy body dementia symptoms don’t improve

In some cases, non-drug methods aren’t enough to reduce or manage challenging symptoms caused by Lewy body dementia.

When someone’s behavior is aggressive, dangerous, overly disruptive, or significantly impacts their quality of life, additional help is needed.

The best place to start is the doctor who is treating your older adult’s Lewy body dementia. They’re familiar with their health history, current medications, and any past reactions to medications.

If their doctor isn’t able to help and/or the behavior symptoms are severe, a neurologist, geriatric psychiatrist (also called a geropsychiatrist), or geriatrician who specializes in tough dementia cases may be more helpful.

The Facts About Lewy Body Dementia

Lewy Body Dementia

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You can help us to help others, by sharing our link upon your social network platforms or by bookmarking us to share later.

If we can reach just one person or family suffering at this time, then we have succeeded in our aim and purpose, but we would like to reach so many more than just one.

We thank you deeply and sincerely.

Most people mistakenly believe that all types of dementia share similar symptoms, like the hallmark signs of forgetfulness and confusion that are associated with Alzheimer’s disease (AD). However, Lewy body dementia (LBD), the second most common type after AD, is characterized by unique symptoms that make it difficult to diagnose and treat.

It’s important for family caregivers who are looking after aging loved ones to familiarize themselves with some of the basic signs of various age-related diseases like LBD. Noticing strange new behaviors or quirks early on can help ensure a senior gets the medical attention they need in a timely manner.

Facts About Lewy Body Dementia

  1. It affects millions of seniors.
    According to the Lewy Body Dementia Association, LBD affects approximately 1.4 million individuals and their families. Although it is widely unknown, it is the second most common form of dementia after Alzheimer’s disease.
  2. LBD is not Alzheimer’s disease.
    Many people use the terms “dementia” and “Alzheimer’s disease” interchangeably, but dementia is an umbrella term used to describe a progressive neurological disorder that affects cognitive function, of which there are many different kinds. Alzheimer’s is one form of dementia that is characterized by impaired memory, issues with decision making, trouble with problem solving and difficulty learning new skills.
    There are crucial differences between AD and LBD. For one thing, people with LBD experience unpredictable changes in cognition, regardless of the time of day, whereas people with Alzheimer’s tend to have more trouble in the late afternoon and evening—a symptom known as “sundowning.” Those with LBD also tend to have more visual hallucinations and movement issues, while the hallmarks of AD include memory loss and trouble performing familiar tasks. Furthermore, abnormal alpha-synuclein protein deposits in the brain called Lewy bodies are the hallmark biological marker of LBD, unlike Alzheimer’s, which is caused by the accumulation of beta-amyloid plaques and tau tangles in brain tissue.
  3. LBD is difficult to diagnose.
    As with Alzheimer’s, LBD can only be conclusively diagnosed through an examination of brain tissue after a person has died. However, medical advancements have significantly improved the certainty with which doctors can diagnose living patients.
    Doctors consider the person’s symptoms, interview their family members, perform physical and mental evaluations, obtain a family and personal medical history, and conduct blood tests and brain imaging tests like MRI, PET and CT scans. Symptoms of LBD include problems with depth perception, hallucinations (often visual), delusions, paranoia, Parkinsonism (body stiffness, tremors, trouble walking), and physical issues like heart rate and blood pressure fluctuations, constipation, and fainting spells. To be diagnosed with LBD, an individual must have dementia as well as several of these symptoms.
  4. Medications and LBD can have adverse interactions.
    An accurate, timely diagnosis of LBD is essential to avoiding dangerous medication reactions. Many drugs prescribed to people with Alzheimer’s disease and Parkinson’s disease—especially antipsychotic drugs used to control hallucinations—can have a dangerous effect on people with LBD. Neuroleptic malignant syndrome (NMS) is a neurological disorder brought on by a negative reaction to antipsychotic medications that often occurs in people with LBD. Individuals who develop NMS can experience muscular rigidity, high fever, variable blood pressure and severe sweating. Anticholinergic medications, benzodiazepines and over-the-counter sleeping pills can also have negative effects on seniors with Lewy body dementia.
  5. Parkinson’s disease and LBD are very similar.
    People with LBD often exhibit the same symptoms as those with Parkinson’s disease dementia (PDD). While the two conditions start off differently, their biological underpinnings are closely related, and people with Parkinson’s disease can be diagnosed with either PDD or LBD. The factor that physicians use to distinguish between these two conditions is the timing of the onset of cognitive symptoms. People who develop dementia within a year of their Parkinson’s diagnosis are thought to have LBD, while those whose dementia symptoms start beyond the one-year mark are thought to have PDD.
  6. LBD affects sleep quality.
    Sleep issues and dementia often go hand in hand, but there’s a specific sleep condition that appears to disproportionately affect people with LBD. Studies indicate that as many as two-thirds of LBD patients struggle with REM sleep behavior disorder (RBD). RBD is an ailment that causes movement, speaking and gesturing during the REM (rapid eye movement) stage of sleep, which is usually characterized by paralysis in healthy individuals.
  7. Like most dementias, LBD is unpredictable.
    One of the biggest challenges facing seniors with LBD and their families is the fact that symptoms of the disease tend to worsen and improve erratically. Periods of mental fog, aggressive behavior, movement issues and vivid hallucinations can last seconds, minutes, hours or days. Fluctuations in symptoms can be caused by underlying infections, medications or general progression of the disease. Because of this, it can be nearly impossible to determine how far LBD has progressed in a given individual. However, if the exacerbating factor is capable of being fixed (like a urinary tract infection), then the person with LBD can often return to their prior level of functioning after receiving treatment for the secondary issue.
  8. LBD has no cure.
    There is currently no way to cure or halt the progression of LBD. Instead, treatments are aimed at controlling the cognitive, psychiatric and motor symptoms of the disorder. Those who have been diagnosed with the condition may benefit from palliative care, which focuses on using drugs and nonpharmaceutical treatments to manage symptoms and improve a patient’s comfort and quality of life. For instance, cognitive issues may be addressed with cholinesterase inhibitors, a type of medication that promotes brain cell function by regulating the neurotransmitter acetylcholine. To improve sleep quality and minimize the effects of RBD, careful treatment with clonazepam (Klonopin) or melatonin might be prescribed. Levodopa may be used to mitigate the motor effects of severe Parkinsonism. Occupational, speech and physical therapies are the most common nonpharmaceutical approaches to helping people with LBD manage their condition and maintain day-to-day functionality. Average life expectancy after diagnosis is about 8 years, with progressively increasing cognitive and functional disability.

Lewy Body Dementia Advanced Stage End Of Life Care

Lewy Body Dementia

This post was not the easiest post we have ever put up on our site concerning lewy body dementia.

Right at the beginning when we first started this information website we made the decision that what was needed, and what carers and loved ones wanted, was the bear facts.

No matter how bitter and hard these facts are to read, people just want the hard facts, that’s why they search the internet, they want the truth.

We decided to set up this site to try and put lots of different information together in one place from all over the internet, so that you don’t have to do the searching.

We just wanted to help and make things easier, if only in a small way.

But, it’s not always easy when choosing what does, and does not go up on our site.

We have added the link to the essay below at the foot of this post.

Advanced stage and end-of-life care

Within the palliative care field, there is a concept called “total pain,” which posits that the physical pain experienced by the sick individual is only part of all the suffering caused by the disease.

The illness impacts the entire family, including the caregiver, and all family members may experience suffering in the physical, psychological, social, and spiritual realms.

Unfortunately, physicians rarely bring up end-of-life issues, and less than half of caregivers say they felt prepared for what was to come.

Caregiving in advanced LBD is very challenging and often causes grief, guilt, and existential distress. 

Anticipatory grief, a feeling of mourning for an expected future that has been lost, is common. Most caregivers at this stage of illness never feel that they are doing a good enough job of caregiving, even though they are.

This feeling of guilt is common and is a normal part of the situation that should be acknowledged. Finding support from a friend circle, support group, faith community, or family is essential. Spiritual care or counseling can be very helpful for the caregiver, family, and person with LBD during this time, to help find perspective.

Resilience isn’t only about enduring; it’s about how you are able to recharge and bounce back. It is not about becoming stoic and being able to endure an increasingly burdened situation; rather, it is about your ability to take a break and recover from a challenging situation.

Caregiver burnout is real: it affects health outcomes and leads to higher mortality in caregivers. Burnout is a healthy, adaptive response – an alarm to notify us that something needs to change before this gets worse. It’s important to notice the alarm is ringing, often by practicing mindfulness and self-care.

What does self-care look like?

  • Monitor yourself for signs of caregiver burnout: feelings of exhaustion, irritation, or frustration.
  • Promote your own well-being and seek balance.
  • Think of it as putting on your own “oxygen mask” on before you help others.
  • Build resilience in yourself.
  • Strengthen meaning and purpose in life: remember why you have chosen to care for this person.
  • Connect with yourself and with others: “connection is protection.”
  • Broaden your understanding of your options and choices (self-efficacy): remember that you do have a choice in how you handle situations, even if they are quite difficult.

Palliative care focuses on improving the quality of life of patients and their families facing serious illness. It seeks to affirm life and provide relief from pain, while offering a support system to the family and the patient.

While palliative care services can be particularly essential later in the disease, increasingly it is recognized as having great value earlier in the course of the illness as well. In some studies, palliative care not only improved the quality of life, but also the length of life.

Motor symptoms

Increased slowness and stiffness can cause discomfort and pain and can lead to contractures. Contractures are stiffness or constriction in the muscles, tendons, or ligaments, which prevent the extremity from moving and can cause severe pain.

Falls often increase due to the loss of balance and impulsivity. Supervision around-the-clock becomes necessary. Patients become wheelchair-dependent, and, eventually, many will become bedridden.

There are a number of strategies and techniques to manage these issues:

  • Range of motion exercises (independent or assisted) and massage to help prevent contractures
  • Skin care to ensure skin is clean and dry
  • Change positioning every 2 hours to prevent formation of pressure ulcers
  • Use a gait belt to help walk and transfer safely
  • Mechanical lifts may be needed eventually
  • Use specialized cushions or mattress to prevent pressure ulcers
  • Broda specialized positioning and mobility chairs

Dr. Katz mentioned a 2019 study in the New England Journal of Medicine entitled “Rehabbed to Death,” which found that for a minority of older adults, sometimes a stay in rehab facility after a hospitalization is actually a gateway into a cycle that sends the individual from the rehab facility back to the hospital, then back to rehab, in their final months of life.

The rehab facility in this case is not really able to “rehabilitate” or improve the person’s health or quality of life; more accurately, this should be called “post-acute” care. This can be in part due to payment structures within Medicare and Medicaid that perpetuate the cycle, and it does not generally represent a good quality of life for someone in their final months or weeks.

If your loved one with LBD is hospitalized and you are recommended to send them to sub-acute rehab, it is more of a post-acute care convalescent home rather than a rehab facility. It is something to be aware of.


In advanced LBD, communication often becomes quite difficult. Voice changes, poor attention, confusion, and word-finding problems are common; impaired communication can also lead to anxiety or agitation.

Some basic tips:

  • Say “yes, and…” – do not argue, even if they are hallucinating or confused.
  • Speak clearly in a calm voice. Tone is often more important than content. Be aware of your tone and facial expressions.
  • Ask “yes” or “no” questions rather than open-ended questions.
  • Maintain eye contact.
  • Offer a reassuring response to frequently asked questions.
  • Find a place and time to talk without distractions.
  • Refer to people by their names instead of pronouns like he or she, to avoid confusion.
  • Talk about one thing at a time.
  • Have patience.
  • When giving instructions, use simple sentences – one piece of information at a time.
  • Recognize what you’re up against.
  • Understand that there will be good days and bad days.

Psychiatric symptoms

Those with advanced LBD often experience hallucinations that may be severe and frightening. Make their neurologist and psychiatrist aware if this is happening.

Behavioral treatments include figuring out or anticipating some possible triggers of the hallucinations or agitation. Cover reflective surfaces, as mirror images are often disturbing to those with advanced LBD. Use a calm tone of voice and avoid confrontation.

At the end of life, hallucinations and psychosis are often so severe that they need medication treatments to help control the symptoms.

The “Five R’s” from the Family Caregiver Handbook:

  • Remain calm.
  • Respond to the person’s feelings.
  • Reassure the person.
  • Remove yourself.
  • Return when you are calm.

Eating and taking medications

Most people will need help with feeding once the disease is advanced. Keep the patient as involved and independent as they can be; finger foods can sometimes allow them to feed themselves for longer than a fork and knife.

Using a plate in a contrasting color can help your loved one to be able to distinguish the food from the plate. Always position them in the upright position when eating, and continue to sit upright for 20-30 minutes after a meal.

Sometimes, those with LBD may refuse to eat due to confusion or hallucinations. They may also experience swallowing problems, such as choking, aspirating food into the lungs, or forgetting how to swallow so that food stays in the mouth.


  • Do not use thickeners; evidence shows they can actually worsen quality of life.
  • Try carbonated beverages.
  • Try smoothie-consistency drinks; thin liquids are most difficult.
  • Give medications with applesauce or something of a similar consistency.
  • Alternate between a bite of food and a sip of fluid.
  • Have them do a chin tuck when swallowing.
  • Benevolent trickery is sometimes necessary.

Weight loss

Weight loss is expected for those with LBD and is an indication of end-stage disease. Anorexia (lack of eating) and cachexia (weakness and wasting of the muscles) are common. It may seem counter-intuitive, but high-calorie supplements or appetite stimulants will not help with these issues and can actually worsen quality and quantity of life. It can be very hard to see the number on the scale continuing to drop, but it’s not something we can fix – it’s a hallmark of end-stage LBD.

Toileting and incontinence

Give your loved one as much privacy and independence as is consistent with their safety. Give them extra time, assess if they need help, and acknowledge that it may be uncomfortable or embarrassing for them.

Timed voiding – visiting the bathroom at regular times throughout the day – can be very helpful to keep them comfortable and avoid accidents. A pad inside the absorbent briefs can provide extra protection.

The Liberty catheter is an external catheter that goes on at bedtime, which can be helpful. Consider keeping a urinal or commode at the bedside so they do not have to get up to the bathroom overnight.

Dental care

It’s important to continue dental care. Brush teeth twice a day; eventually, they will likely need assistance with this task. A little bit of lemon juice can aid in swallowing and help clean the palate.

Practices to avoid in advanced LBD

In the past, patients with swallowing difficulties were often given thickened liquids. However, recent studies have shown this is actually a harmful practice and should not be continued! Thickened liquids are generally so unpalatable that people often refuse to drink them, which can lead to dehydration and kidney damage.

Feeding tubes are another practice in those with dementia that have now been shown to be counter-productive: artificial nutrition does not prolong or improve life for those with advanced dementia. Rather, assisted oral feedings are the best course.

Post-operative pain and infection after feeding tube insertion, as well as increased likelihood of delirium and repeat surgeries, are some of the reasons why this practice is no longer recommended. Caregiver burden often increases as well.

Fluctuations in alertness

As LBD progresses, individuals will have more and more fluctuations of alertness. This often presents as seeming “zoned out” for a few minutes, and then they come back to normal. It is not a medical emergency, and there is no known treatment.

End-of-life care: Days to weeks

At this point, most people are bedridden. Focus on creating comfortable surroundings. Bring nature indoors, if possible, and play your loved one’s favorite music. Soothing touch, such as a gentle massage, can be relaxing and pleasurable. Smells such as lavender oil can be pleasant as well.

In terms of medications, if Sinemet (carbidopa-levodopa) has been helpful for them, continue it for as long as possible. Reduce other medications to only what is necessary, or will help them remain comfortable.

If liquid formulations of medications are available, switch to those; if the person is unable to swallow, then suppositories may be the best option. Most patients at this stage of LBD will need sedating medications to control the agitation and psychosis that generally increase at the end of life.

Prognostic indicators in LBD

There are certain indicators that provide a prognosis – the likely course or time frame of late-stage LBD. These indicators are used by Medicare to determine eligibility for hospice services, which require an estimate of six months or less of life.

For those with weight loss, these are the same criteria as for “Adult Failure to Thrive,” a different medical diagnosis. The main criteria for hospice eligibility are a body mass index (BMI) of less than 22, and a score on the Palliative Performance Scale (PPS) of 40 or less, indicating someone who is mainly in bed and needs assistance with activities of daily living (ADLs).

These two factors are strong indicators that someone is likely within 6 months of the end of their life, and should receive hospice services to ensure the best care.

For those with dementia, hospice eligibility requires at least one of the following in the past 12 months:

  • Aspiration pneumonia
  • Pyelonephritis (kidney infection)
  • Septicemia (infection of the blood)
  • Stage 3 or 4 pressure ulcers
  • Recurrent fever
  • 10% weight loss (or greater) in the past 12 months
  • Albumin less than 2.5 mg/dL (measurement of protein indicating malnutrition) and greater than or equal to 7C on the FAST scale:
  1. Speaks 5-6 words per day
  2. Speaks only 1 word clearly per day
  3. Cannot walk without personal assistance
  4. Cannot sit up without personal assistance
  5. Can no longer hold up head independently

What do people die of in LBD?

There have been very few studies on this question. For most, aspiration pneumonia – a lung infection caused by inhaling food or oral secretions into the lungs – is the cause of death. Sometimes aspiration pneumonia leads to sepsis, an extreme reaction by the body in response to a systemic infection, which can be fatal.

Reduced mobility, falls, or fractures can also be life-threatening. Failure to thrive, which is the severe weight loss associated with late-stage dementia, is another cause as well.

Hospice care: Role of the neurologist

Right now, only about 5% of patients with LBD will receive hospice services

It’s important that more LBD patients and families receive the help and care available to them through hospice. Your loved one’s neurologist can still play a helpful role even after hospice is involved, by helping to communicate and coordinate with the hospice team and educating them about the specific needs of LBD patients, such as medications that are commonly used in a hospice setting, but which should NOT be given to those with LBD.

Medications to avoid in hospice patients with LBD:

  • Haloperidol (Haldol)
  • Metoclopramide
  • Phenergan

Alternative medications that are safer to use in LBD are quetiapine (Seroquel) for agitation/psychosis and ondansetron (Zofran) for nausea.

The Advance Healthcare Directive is a legal document that allows an individual to spell out their preferences for life-saving medical interventions and end of life care, ahead of time, and designates an individual who is empowered to make healthcare decisions on their behalf, if necessary. This requires that you speak with the loved one about their wishes while they are still able to consider such decisions.

Most people who go into cardiac arrest are not able to be resuscitated successfully; only 5% of people with dementia who undergo CPR survive. It is not like the movies; the chances of a good recovery are actually quite small, contrary to the portrayal in the movies. The POLST (Physician’s Order for Life Sustaining Treatment) is a form, usually yellow, that tells emergency professionals what to do in a crisis when the patient cannot speak for themselves.

Stanford PD Community Blog

Lewy Body Dementia

Lewy Body Dementia
Lewy Body Dementia

Please help us to help others, spread the word and share our link for Lewy Body Dementia UK.

Without your help and support we can do very little apart from being just another website on the internet, reaching very few people who may need information and help.

But with your help, then others who also really need support too can benefit who may not even know we exist.

You can help us to help others, by sharing our link upon your social network platforms or by bookmarking us to share later.

If we can reach just one person or family suffering at this time, then we have succeeded in our aim and purpose, but we would like to reach so many more than just one.

We thank you deeply and sincerely.

We do put a lot of work and time voluntary into this site gathering information to try and help others, but without your help and support we are nothing but a clanging cymbol, ignored and forgotten.

Dementia with Lewy bodies (DLB) is the second most common form of neurodegenerative dementia in older adults.

To be diagnosed, patients will present with dementia in addition to at least two of the following core symptoms: fluctuating cognition, recurrent visual hallucinations, REM sleep behavior disorder, and/or parkinsonism.

Recommended treatment strategies focus on providing symptomatic relief; there is no FDA-approved medication to treat DLB. Pharmacists can help prevent hospitalizations and resultant morbidity by ensuring that patients do not take medications known to exacerbate fall risk and worsen cognitive deficits.

Broadly defined, neurodegenerative dementia is a progressive cognitive decline that adversely and markedly impairs the patient’s overall functionality.1 Dementia with Lewy bodies (DLB) accounts for only 10% to 20% of total dementia diagnoses, but its economic and societal costs are nonetheless burdensome.

Patients with DLB incur higher healthcare costs, have longer hospitalizations, report lower quality of life, and have caregivers with higher levels of distress when compared with patients with Alzheimer disease (AD).

There is no FDA-approved medication to halt the progression of cognitive decline in DLB, which may progress more rapidly than in other dementias.4 Current treatment strategies that focus on symptomatic control provide modest benefit.

Lewy body disease (LBD) is characterized by the presence of Lewy bodies (LBs) and Lewy neurites and comprises a diagnostic spectrum that includes Parkinson’s disease (PD), PD with dementia, and dementia with LBs.

LBs and Lewy neurites are insoluble aggregates composed mainly of phosphorylated α‐synuclein and can be widely distributed throughout the central and peripheral nervous systems.

The distribution of LBs may determine the LBD phenotype. Braak hypothesized that Lewy pathology progresses ascendingly from the peripheral nervous system to the olfactory bulbs and brainstem and then to other brain regions. Braak’s PD staging suggests that LBD is a prion‐like disease. Most typical PD cases fit with Braak’s PD staging, but the scheme fails in some cases.

Alzheimer’s disease, progressive supranuclear palsy, corticobasal syndrome, multiple system atrophy, frontotemporal lobar degeneration, Creutzfeldt–Jakob disease, cerebrovascular diseases, and essential tremor are common misdiagnoses for pathologically confirmed LBD. LBD exhibits considerable heterogeneity in both clinical and pathological settings, which makes clinical diagnosis challenging.

In 1817, Parkinson described the clinical features of six cases of the disease named after him.1 In 1980, Kosaka et al. proposed the term Lewy body disease (LBD).2 In 1996, the first consensus guideline on dementia with Lewy bodies was published.

LBD is a disease concept characterized by the presence of Lewy bodies (LBs) and Lewy neurites and includes Parkinson’s disease (PD), Parkinson’s disease with dementia (PDD), and dementia with Lewy bodies (DLB).

The phenotypes of PD and DLB emphasize motor abnormalities and dementia, respectively (Fig. 1). The clinical phenotype of LBD may be determined by the anatomical distribution of LBs rather than by the severity of Lewy pathology.

The major component of LBs and Lewy neurites is phosphorylated α‐synuclein, LBDs are classified as α‐synucleinopathies.

The Cruel LBD: Lewy Body Dementia

NIH Medline Plus

Randal G. was always a strong public speaker.

“I was a person used to giving an hour-long presentation to 400 people with minimal notes. Everything flowed,” Randal says.

But in 2011, when he was 55 years old, something changed. During a speech for his consulting business, he couldn’t find the right words to say. He also couldn’t keep track of a project he was leading for work, which wasn’t like him.

It turns out, these were early signs of Lewy body dementia (LBD). The disease causes people to forget things, lose their balance, and have trouble moving and thinking. Over time, it causes serious mental and physical decline.

More signs

In the following months, Randal and his wife, Lisa, noticed more changes.

He had tremors in his hands that he couldn’t control. He forgot how to do everyday things.

When Lisa’s car had a flat tire, she called Randal, her go-to car guru. But he didn’t know how to help.

“It was a real shock, and I had a bit of anger, because I felt let down,” she says. Was depression causing him to lose focus at work? Were the tremors a sign of Parkinson’s disease?

As his symptoms worsened in 2013, Randal and Lisa went to his primary care doctor to find out what was wrong. He ended up visiting three different doctors over eight months before he was diagnosed.

Treatment for LBD

Randal now takes medications to control the tremors in his hands and to slow the disease’s effects on his thinking and concentration.

He also goes to physical therapy regularly, which helps with his balance. He gets massage therapy and Botox injections for muscle tightness in his legs.

To help him solve everyday problems, like using a computer mouse or eating, Randal sees an occupational therapist.

Life with LBD

Randal and Lisa say it’s been a challenge coping with Lewy body dementia. The symptoms get worse, but not in a predictable way.

“Active doesn’t have to mean physically active. What is most important is that you are doing something and you can feel like you are valuable.”- Lisa G.

“Some days I can load and unload the dishwasher with no problem at all,” Randal says. “But some days I can deal with the bowls and the silverware, but can’t deal with other things”

Those kinds of ups and downs are hard for a person with Lewy body dementia.

“I believe it’s also difficult for the caregiver,” Randal says.

One way Randal copes with LBD is by staying active.

For several years, he volunteered two days a week in a community garden. He also helped farmers set up their booths at a local farmer’s market.

For people who think they might have LBD, Lisa recommends that their loved ones take detailed notes of behavior and other changes, as well as the dates they happen. She says it helped with her husband’s diagnosis.

Helping others

Another way that Randal copes is helping other people with Lewy body dementia.

He volunteers for medical studies and undergoes regular MRIs and other tests to help expand researchers’ knowledge about the disease. Randal also participates in online and in-person support groups.

Randal and Lisa have shared their experiences with members of the LBD community and the Lewy Body Dementia Association, a nonprofit organization established to support people with LBD and their families, increase public awareness, and raise money for research.

Their advice for other families with LBD is to try and work around your changing symptoms, as hard as it may be, and ask for help when you need it. Staying active is also key.

“Active doesn’t have to mean physically active, or leaving your home,” Lisa says. “It can be, but the situation changes with the disease. What is most important is that you are doing something and you can feel like you are valuable.”

5 patient tips for coping with Lewy body dementia

Randal G. shared lessons to help others adjust to life with Lewy body dementia. His tips have been edited for space.

  1. Find ways to work around changing symptoms. Living with LBD means that as soon as you settle into a new normal, the sand will shift under your feet. You will find new or worsening symptoms and you will have to find a new normal. It will be frustrating. It will be painful. It will be hard. But it helps to remember that there are people available to help you.
  2. Try to be active and social. Staying active and participating in hobbies you love can help you feel more like yourself. Look for activities that include other people. There are many online and in-person support groups and volunteer groups where you can contribute and meet others. Try to find something that helps someone else.
  3. It’s OK to ask for help. In fact, it is better to accept help from everyone you care about sooner rather than later. A wise man once taught me that for everyone who wants to give help, there has to be someone to receive it. Now it’s our turn to receive.
  4. Give space. There will be some friends or people who, for their own reasons, can’t handle your new reality. Try to forgive them.
  5. Welcome new friends. There are also people who can embrace your new reality, such as people you meet in support groups. Embrace their kindness with gratitude.

Lewy Body Dementia: The Fightback Begins USA UK

USA Lewy Body Dementia

Please help us to help others, spread the word and share our link for Lewy Body Dementia UK.

Without your help and support we can do very little apart from being just another website on the internet, reaching very few people who may need information and help.

But with your help, then others who also really need support too can benefit who may not even know we exist.

You can help us to help others, by sharing our link upon your social network platforms or by bookmarking us to share later.

If we can reach just one person or family suffering at this time, then we have succeeded in our aim and purpose, but we would like to reach so many more than just one.

We thank you deeply and sincerely. We do put a lot of time and work voluntary into this site gathering information to try and help others, but without your help and support we are nothing but a clanging symbol, ignored and forgotten.


Lewy body dementia causes a progressive decline in mental abilities.

People with Lewy body dementia may experience visual hallucinations, and changes in alertness and attention.

Lewy body dementia is a progressive illness with no known cure. 

Dementia affects millions of Americans and hundreds of thousands of British People.

There are several types of dementia that we know of, including Alzheimer’s Disease and Lewy Body Dementia.

While forms of dementia vary in symptoms and severity, the Global Deterioration Scale aids in identifying the typical progression.

If you or someone you know may be in the early stages of dementia, here’s what you need to know about its seven stages:


Stage one is entirely undetectable to the patient, loved ones, and physicians. At this stage, individuals do not experience or present with any cognitive decline.


Stage two may bring subtle changes in the individual, such as mild forgetfulness. These instances may include forgetting names or having trouble locating familiar objects. In the second stage of dementia, it’s difficult or impossible to notice these minor symptoms, and a diagnosis is not yet able to be reached.


Stage three involves mild cognitive decline. The symptoms may become more noticeable to loved ones of the individual in stage three dementia, and a diagnosis may be near. This stage often includes mild memory loss, out of character forgetfulness, and a slightly decreased ability to concentrate.


Many people living with dementia are officially diagnosed during stage four, which is when physicians are able to pinpoint cognitive decline with an exam. At this point, the patient will likely present symptoms such as life-disrupting forgetfulness and out-of-character difficulty performing daily responsibilities. It may become more challenging for those with stage four dementia to manage finances or navigate to new locations.


Stage five is marked by moderately severe cognitive decline. Individuals in this stage often have notable memory loss and begin to struggle with daily activities. Significant details such as address or phone number may be difficult to recall, and those with stage five dementia will likely need assistance with tasks such as meal preparation and bathing.


Individuals in stage six need a high level of support to live comfortably. Memory loss tends to be significant, and many in stage six dementia are only able to recall memories of early life. Incontinence is common in this stage, and many patients also begin to lose their ability to speak. A change in personality may occur during this time period, which lasts an average of 2.5 years.


Stage seven typically lasts for 1.5 to 2.5 years and is characterized by very severe cognitive decline. Patients in stage seven lose their ability to communicate, and are often unable to walk. Individuals in late stage dementia require extensive assistance with life’s activities, and often need round the clock support.

Dementia affects approximately 5 million Americans each year. Lewy Body Dementia (LBD) comprises approximately 1.4 million cases within this figure, and is often misdiagnosed. If you’d like to learn more about Lewy Body Dementia then please feel free to browse our website.



Most caregivers are concerned/worried that something is not right. Please note that symptoms from later stages can appear at this early phase. At the end of this phase, dementia is becoming difficult to deny

Possible REM sleep disorder; Restless Leg Syndrome; Hallucinations; possible Parkinson’s disease diagnosis, Myoclonus (involuntary jerking) · Increased daytime sleep – two+ hours · Loss of sense of smell (Anosmia); vision problems; hearing loss; speech problems · Impaired physical coordination (ataxia); shuffling gait; slowness of movement; altered posture (called Lewy Lean) · Chronic runny nose · Impaired comprehension and cognition; inability to learn new tasks; loss of initiative and interests; diminished alertness · Short-term memory loss but able to hide (mask) symptoms or engage in show time · Mood: Fluctuations; depressed/anxious; paranoia; may accuse spouse of infidelity, aggression · Able to engage independently in leisure activities · Handwriting is affected; impaired ability to handle financial responsibilities · Still may be able to work but driving skills often compromised


Most caregivers are worried that something is wrong and seek medical attention. May be given an incorrect diagnosis (Alzheimer’s, Multisystem atrophy, Multi-Infarct Dementia, Depression, Parkinson’s). Please note that symptoms from later or earlier stages can appear at this phase.
It is strongly suggested that caregivers consult with an elder law attorney at this phase. At least, have a Power of Attorney and Medical Power of Attorney document on the patient. Family, friends, caregivers may successfully take financial advantage of LO.
Caregivers need to familiarize themselves with all finances and assets to possibly consult with a financial advisor.

 Ambulates/transfers without assistance but increased risk for falls/requires walker; leaning to one side (Lewy Lean); possible fainting; able to perform most ADLs without assistance · Some autonomic dysfunction (changes in BP, sweating, fainting, dry mouth), occasional episodes of incontinence (one or two a month), constipation ·Parkinson’s symptoms may be controlled with medication ·Increased difficulty in:

Finding words (aphasia); organizing thoughts; reading & comprehension; following TV programs; operating home appliances

May be able to administer own medications. · Able to follow content of most conversations · Able to be left unsupervised for two or more hours · Delusions; Capgras Syndrome (seeing or thinking that a person or objects have been replaced by another identical one); may be more depressed; more paranoid and more agitated


Most caregivers have the correct diagnosis. Caregiver and patient actively grieve. Caregivers need regular planned respite. Caregiver needs require regular preventive health care.
Caregivers may need home health aide assistance to maintain LO in the home. Patient is at risk for long-term care due to: psychological symptoms, personal safety risk, and caregiver safety risk. The needs of the patient affect personal finances. Please note that symptoms from later or earlier stages can appear at this phase.

Ambulation/transfers are impaired, needs assistance with some portion of movement · At risk for falls; increase of Parkinsonism symptoms · Increase of autonomic dysfunctions; frequent episodes of incontinence (two+ per week) · Needs assistance/supervision with most ADLs; may require DME · Speech becomes impaired, projection (volume) may decrease · Able to follow content of most simple/brief conversations or simple commands; increased difficulty with expressive language · Able to be left unsupervised less than one hour but unable to work or drive · Unable to administer medication without supervision· Unable to organize or participate in leisure activities ·Inability to tell time or comprehend time passing · Mood fluctuations (depressed, paranoid, anxious, angry) requiring medical monitoring; increased confusion; delusions; and increased Capgras Syndrome · Severity of symptoms may increase or decrease


Caregiver at high risk for chronic health/joint problems. Self-care is paramount to providing patient care.
The needs of the patient require the assistance of a home-health aide/private-duty aide two-to-seven days per week. Increased patient needs may require potential for long-term care placement. Patient may be declared mentally incapacitated. Caregiver may need to explore Hospice services.

Needs continuous assistance with ambulation/transfers; high risk for falls; may need electronic lift recliner chair ·Needs assistance with all ADLs; requires 24-hour supervision · Autonomic dysfunctions need regular medical monitoring; incontinent of bladder and bowel · Unable to follow content of most simple/brief conversations or commands; speech limited to simple sentences or one-to-three-word responses · Parkinson’s symptoms need regular medical monitoring · Choking, difficulty swallowing (dysphasia), aspiration, excessive drooling · Increased daytime sleeping · Hallucinations prevalent but less troublesome


Caregiver is actively grieving. Potential for increased caregiver stress. Hospice assistance is strongly suggested. Caregiver will need hands-on support from others to maintain LO at home. Caregiver may need to honor decisions made earlier on the Living Will.

Dependent for all ADLs; patient may require hospital bed, Hoyer lift or Mo-lift, suction machine, etc.); and assistance with repositioning · High risk for URI, pneumonia, and UTI ; skin breakdown; and may have a fever · Difficulty swallowing with possible decision for feeding tube necessary · Muscle contractions – hands, legs, arms; lean to either side very pronounced · May need nutritional supplements – Ensure/Boost/ Carnation Instant Breakfast ·Unable to follow simple commands; decreased or no language skills · Constant delusions · Fluctuations less frequent and more severe

Simple Checklist for Lewy Body Dementia Diagnosis

How many of the following have occurred at least three times over the past six months?

1. Slowness in initiating and maintaining movement or have frequent hesitations or pauses during movement?
2. Rigidity (with or without cogwheeling) on passive range of motion in any of the 4 extremities?
3. Loss of postural stability (balance) with or without frequent falls?
4. Tremor at rest in any of the 4 extremities or head?
5. Excessive daytime sleepiness and/or seem drowsy and lethargic when awake?
6. Episodes of illogical thinking or incoherent, random thoughts?
7. Frequent staring spells or periods of blank looks?
8. Visual hallucinations (see things not really there)?
9. Appear to act out his/her dreams (kick, punch, thrash, shout or scream)?
10. Have orthostatic hypotension or other signs of autonomic insufficiency?

Total how many of the above 10 items occurred at least three times during the past six months. If the total is three or more, there is a very high likelihood of the presence of Lewy Bodies. Discuss the results with your medical specialist.

Lewy Body Dementia: The Shocking Truth LBD & Alzheimer’s

Lewy Body Dementia

Personal Testimony Lewy Body Dementia Jean Rough

Knowing that I have both Alzheimer’s and Lewy Body disease, I found myself interested in what I could learn.

In my search, I discovered Dave Itzkoff who wrote a book about Robin Williams.

Robin Williams, the actor, had Lewy body dementia (LBD) but it was not discovered until an autopsy after his death. Itzkoff learned about Robin’s symptoms mostly from Robin’s wife Susan.

I learned from Dave. Itzkoff’s book was a BIG breakthrough for me.

As I read about how much Robin suffered, I felt my own suffering. I no longer was alone.

For instance, he and I had the frustration of not knowing if a LBD symptom is leaving, arriving, or returning.

No way to prepare. And no way for caregivers to prepare.

Robin’s wife and others tried everything to stop a symptom but nothing would work. His body had its own time. And so does mine. 

Here is the “endless parade of symptoms” that Robin went through, mostly in his last year of life. It shocked me that his symptoms were so similar to my own symptoms. 

** anesthesia 

** severe loss of weight 

** loss of sense of smell 

** heartburn 

** tremor in left hand 

** less voice 

** stomach cramps 

** constipation 

** trouble seeing 

** cogwheel rigidity (limb stops itself) 

** stooped posture  

** “freeze” current motion 

** anxiety (off the chart) 

** thinner and frail 

** moments of quiet; moments of crying 

** motor impairments

** difficulty remembering 

** indigestion

**Hallucinations are not mentioned in Robin’s list, but they have been important for me

For each symptom there is a story. I have been keeping a journal for my stories. For example, four years ago I was changing my niece’s diaper. In cleaning it up, I noticed that I was not smelling it.

That night at dinner with my husband and my 90 year old father I asked them to smell with eyes closed. They could smell. I could not. At the moment Lewy body Dementia was not a part of my life. But last year I realized that it was most likely due to Lewy. And I still can’t smell. 

Another all time experience is that my weight was around 124 lbs in 2014 and now is about 97. No matter what and when I eat, my body is not responding. Of course there are many Lewy symptoms that appear and then disappear.

This was true with my rheumatoid arthritis. It lasted for a couple of years and then disappeared. Please note that RA does not usually disappear! 

How did this begin for me?

Four years ago, at least, I began noticing that I was being different, such as trouble with words. I took one of those tests and did fairly well making a clock, knowing where I lived, and remembering the three animals proposed to me when I arrived. A doctor did an X-ray and said it was fine with slight mild cognitive impairment (MCI). 

Two years later those small mistakes and thoughts on the tests had shifted. My husband Jim and I decided to attend an event in Seattle focused on Alzheimer’s with Dr. Tom Grabowski who is Director of UW Medicine Memory and Brain Wellness Center.

After attending one of his private sessions and taking a MRI, we were ready to hear the news. Later Dr. Grabowski suggested that I bring someone who could be a caregiver. I decided to bring Jim my husband and our son Dan and his wife Bonnie. 

As we were preparing to leave our home in Port Townsend for our session, I remembered that I had that X-ray from the years before. But where would it be in our home after all of these years! I gave it one possibility, in my husband’s closet pushed way back. I went into the closet and there it was! We took the X-ray with us to Seattle. It was a good choice because it gave Tom enough to measure and see a few differences.

At the Memory and Brain Wellness Center, Dr. Grabowski asked lots of questions. He also shared what he saw on the MRI. It was hard for me to see what clearly was OK and what was not. It was very important to include our caregivers. They asked good questions and now I have better knowledge of what I can expect.

Another Memory and Brain Wellness Center event was held a month ago with the focus on Lewy body dementia. I was impressed how well the organizers allowed time to share and to hear other stories as well as professionals that shared. And two of my caregivers attended by taking off of work (and picking me up at the ferry!). They had the chance to learn more about Lewy. We hope that the Center will offer more events. 

What It’s Like to have LBD

A friend asked me what is it like to “have” LBD. The image that comes to my mind is a ferris wheel except you don’t know when it will start or stop. What helps me is to be conscious about how I feel each day. If it is something a bit unusual, then see if it is in the LBD list or maybe something new for the list appears. And give yourself a moment to relax or take a walk knowing that this event will pass. In the meantime, check to see if you need to inform your caregivers in preparation for the ups and downs. 

I’m Cleaning! 

Recently I cleaned our dishwasher. Then I brought my cleaning stuff to the bathroom. I noticed that there was lots of dust on the floor behind the toilet. Obviously it had not been cleaned for a while. I got down on my knees and cleaned. Then I noticed the wall had some spots, and another wall to clean. I cleaned them.

I was in the midst of the next wall when I suddenly realized something. I stopped and screamed with a huge smile: “I’m cleaning! I’m cleaning!” Something was released that had been locked up along with LBD. The “locked up” had been keeping me safe. I could only face so much at the time of my life. But the “doing the cleaning” released me. That is how great I feel!

Driving my car

Something else I notice. If I share with someone about a problem, such as forgetting where they put things or getting lost when driving their car, their response often is: “I know what you mean. That happens to me all the time.” Yes, that is true as how she/he experienced it. However, there is this different kind of loss. My car loss situation shortens my thinking. For instance I might not think to call “Siri.” My friend with getting lost with a car has the choice to think and perhaps check with Siri. 

Recently I was driving my car and pulled out from our hospital to a larger street. My destination was to turn left to a grocery store. It looked clear. When I looked to the right two cars were coming. Knowing the left was clear I moved out but the left was not clear. I had to make a quick choice. In the moment, turning a bit fast to the left seemed the best choice.

I gave the car a quick move and made it. But it only worked because the car to the right slowed down. As I drove away I hoped the driver would follow me so I could apologize. He did pull in right next to me. I walked over and apologized. He happened to be someone I knew and was mayor of our town for years. We talked about the almost crash. We knew that all of us were over 72.  I shared that I had Alzheimer’s and Lewy. And that Dr. Grabowski had mentioned that I should consider not driving. Now I know why. 

Two weeks later I was driving to pick up my great niece and take her to a friend’s house. An easy task. However I made a wrong turn and had no Idea where to drive. It was like being in a swirl from street to street, with little thinking. Finally I found a way to get out of the swirl and finish my task with the car.

That night Jim and I talked about our choices. It hit us hard. How could we manage without my driving? It would be far more difficult for both of us. But as we talked we remembered Tom’s words. And we remembered two other events in Seattle that would follow in as Lewy. And we talked about our grandchildren. This is our first week with Jim driving me to someplace. I am riding my bike more often. 


I saw Jim walk by with morning light under the doorway while I was lying on my bed. I called out to have him join me. But he doesn’t hear me. As I am watching the door, I now see these crazy looking creatures, very small, parade under the door going in a perfect line, the opposite than what Jim was doing. I smile and speak to the creatures. Soon I realize that I have been in a visual hallucination, once again.

Finding Help 

We have someone who helps with cleaning, gardens, and paying bills. But there is no one who helps with our daily living. As simple as keeping our calendar up to date. It can no longer be me. Small tears come. We begin to consider our options, such as having someone who stays during the day. Or how later could sleep where.

There is some laughter as to how we could sleep. But mostly we are caught into a maze that has no way out. As if we have hit ground. The reality is that we have a long way to go. Maybe it is closer than we think. The thought is scary, sometimes more so for Jim than me.

COVID‐19 Coronavirus Lewy Body Dementia DLB Family Caregivers Care Homes

Lewy Body Dementia

Key points

  • The physical, cognitive and neuropsychiatric challenges associated with dementia with Lewy bodies make people particularly vulnerable to COVID‐19.

  • Adverse effects may also occur from social isolation, the under‐treatment of existing DLB related symptoms/problems and the negative impact on caregivers.

  • A vigilant multi‐disciplinary approach is needed to meet the health and psychosocial needs of people with DLB and support family caregivers.

During the current SARS‐CoV‐2 pandemic dementia has been identified as disproportionally common in adults aged over 65 who develop severe COVID‐19. 1 

Observational data from the International Severe Acute Respiratory and Emerging Infections Consortium also confirms a high prevalence of dementia in older adults hospitalised with COVID‐19. 2 

It is so far unclear whether there is any direct effect of dementia pathologies as dementia is a disease of old age, and thus likely to be associated with a variety of comorbidities, in particular, frailty, which may further exacerbate the risk of severe infection.

In addition up to one third of COVID patients have demonstrated neurological sequelae 3 and there may be both direct (viral infection within the brain, vascular effects) and indirect effects (eg, host immunological response, impact of treatment) of SARS‐CoV‐2 on the brain. 4 

It is therefore possible that SARS‐CoV‐2 infection may accentuate any pre‐existing neurodegenerative disease.

Dementia with Lewy bodies (DLB) represents at least 4.2% of community‐based dementia, and 7.5% of cases in clinical dementia populations. 5 

Under‐diagnosis is however common, meaning the true figure is likely to be higher. 6 This form of dementia presents with several distinct cognitive, neuropsychiatric, sleep, autonomic and motor symptoms.

These include spontaneous alterations in concentration and attention, recurrent well‐formed visual hallucinations, and rapid eye movement (REM) sleep behaviour disorder.

Further problems relate to severe autonomic dysfunction (eg, severe constipation, orthostatic hypotension, and urinary difficulties), and spontaneous features of Parkinsonism, including gait impairment. 7 

People with DLB are admitted to hospital more frequently, and utilize inpatient care to a substantially higher degree, than people with Alzheimer’s disease (AD) or the general elderly population. 8 

They also have higher and earlier mortality than people with other dementias. 9 10

The myriad of symptoms associated with DLB results in a complex condition with significant functional disability and a likely vulnerability to COVID‐19. Furthermore, DLB patients may be biased against in treatment decision algorithms that consider multimorbidity, particularly for critical care access.

For example within the UK, the current NICE guidance on critical care for COVID‐19 algorithm (https://www.nice.org.uk/guidance/NG159) uses the Clinical Frailty Scale, whereby a higher category of frailty reduces the likelihood of receiving critical care.

On a measure of this type, it is probable that people with DLB would score highly as a consequence of both their physical and their cognitive problems.

As the current wave of COVID‐19 recedes and jurisdictions move to staged social distancing, people with DLB may need to remain shielded longer than some other groups due to their susceptibility and age profile. Even where a person with DLB avoids developing COVID‐19 and hospitalisation, adverse outcomes may result from this period of enforced social isolation.

People with DLB invariably have their healthcare needs managed by professionals from a wide variety of specialties, including doctors (primary care, psychiatrists, neurologists, geriatricians), nurses, psychologists, occupational therapists, pharmacists, carers, social workers and physiotherapists, in addition to benefiting from the support of charities and community groups.

This raises a particular challenge as shielding or social isolation risks at least some healthcare and psychosocial needs remaining unmet.

One feature of DLB is an increased risk of infection, notably bronchopneumonia. 11 

This is particularly concerning during the current pandemic, where it might exacerbate, or be mistaken for COVID‐19 symptoms. Secondary pneumonias may be more common given that people with DLB often have a pharyngeal‐type dysfunction, which results in a high prevalence of silent aspiration. 12 

This could contribute to diagnostic difficulty especially in conjunction with anosmia, another symptom commonly associated with DLB, 13 and which is also indicative of COVID‐19.

In common with other dementias, a person with DLB may fail to notice or report symptoms, of, for example, fever, which may indicate COVID‐19 or another infection.

Furthermore, coupled with a reduction in the availability of face‐to‐face healthcare provision, infections may progress significantly before detection.

Family caregivers are important partners in detecting changes in normal behaviour, which may indicate a developing illness. However, they may need guidance in asking appropriate questions particularly where they are living apart and maintaining contact by phone.

In the UK ‘Telemedicine’ is replacing many face‐to face consultations during the current pandemic and is being viewed as a potential longer‐term alternative for primary care. 14 

In addition to age related hearing/visual impairment, people with DLB may find this form of communication particularly challenging to navigate especially when they are feeling unwell.

They have significantly more visual complaints when compared to people with AD, including misjudging objects, difficulty reading, and increased double vision 15 and thus could struggle to interact with the virtual medium.

Language dysfunction is more severe in DLB than other dementias and includes impairments of speech fluency, speech freezing, reduced pitch range and hypophonia. 16 17 

This may lead to problems in both responding to on‐screen questions and being understood. Such challenges need consideration when transforming services to ensure equality of access.

People with DLB are at increased risk of developing delirium if they develop an infection compared with AD. 18 As infection progresses in severity, treatment becomes more difficult and the risk of delirium and hospitalisation increases.

The maintenance of good general hygiene is therefore important to reinforce, for example, where there are continence difficulties, as urinary tract infections can escalate quickly.

It is also vital that family caregivers understand the importance of the early assessment of suspected infections by a health care professional.

This could include reassurance that perceived pressures on healthcare staff and concerns about overburdening services do not warrant any delay in seeking help. It is important that caregivers inform health care professionals of the DLB diagnosis in any communication.

This will highlight to them the need for caution when prescribing anti‐psychotic medication due to the risk of a severe sensitivity syndrome. 19 

Families can assist healthcare professionals to differentiate between fluctuations commonly experienced by their family member and unfamiliar behaviour that may indicate delirium.

Avoiding unnecessary hospital admissions is important, as the change of environment and routine are likely to increase confusion in people with DLB.

They may feel particularly isolated if visiting is restricted and they are unable to manage phone contact. It may be advisable for family caregivers to consider in advance whether the person with DLB is sufficiently cognitively aware to express their wishes or preferences regarding any future hospital admission or treatment.

People with DLB may have difficulty in understanding and following instructions regarding the importance of good hand hygiene in reducing the risk of COVID‐19 transmission.

Clear, straightforward explanations are key, with frequent repetition as needed. Signs or pictures can be attached above sinks to act as prompts, and caregivers can model good hand washing practice, and give positive reinforcement of successful performance.

If the care‐recipient is reluctant, sitting with a bowl of water rather than standing at the sink or incorporating a hand massage may be welcomed.

With appropriate signposting, less cognitively impaired people with DLB may be able to access videos demonstrating hand washing techniques.

Other physical symptoms of concern include orthostatic hypotension. This is more common in DLB than other dementias with a greater reduction in systolic blood pressure and a more prolonged period of orthostasis. 20 

This may increase the risk of falls, which is also higher for people with DLB than for other dementias. 21 

This possibility is exacerbated by poor hydration, a potential concern if people are missing the usual prompts from family caregivers.

Good hydration can be maintained through reminders by phone, sharing drinks virtually during video calls or alarms set at regular intervals.

If there is a risk of falls going undetected, families may need guidance to assess the relative risks of visiting rather than remaining physically distant.

Healthcare professionals should be willing to support families in assessing these risks and helping them reach decisions about the most appropriate level of contact. This should take into account both national guidance and the needs of the individual with DLB.

Many people with DLB take short daily walks or participate in low‐level exercise classes offered by gyms or day centres.

Regular exercise can interrupt the trajectory of frailty, limitations in mobility, stiffness and sarcopenia, often evident in DLB. Benefits include improvements in gait speed and in the daily activities subsection of the UPDRS. 22 

While the exercise capacity of people with DLB is relatively low in comparison with other cohorts with dementia, any reduction may heighten the falls risk.

Maintaining safe home‐based activities, for example, by following appropriate on‐line fitness programmes, in many cases with assistance, may reduce the impact of the lost exercise opportunities and minimise skeletal or muscular pain from reduced mobility.

2.1. Cognitive and neuropsychiatric challenges

A lack of meaningful activity adversely affects quality of life in people with dementia, 23 and people with DLB benefit from cognitively stimulating activities. 24 

They may find the sudden loss of these and the changes to their daily routine necessitated in response to COVID‐19 difficult to comprehend.

They may also struggle to understand the need for social isolation, and misinterpret the reason for the lack of visits from family and friends. People with DLB may react with anxiety, anger, stress, or withdrawal in response to worry they perceive in others, or news events about which they have limited understanding.

Caregivers can assist by sharing simple non‐threatening messages about COVID‐19, emphasising the temporary nature of the situation, and reassuring the person with DLB of their continued importance to them despite their physical absence.

Frequent, brief communication is probably of more value than extended contact where concentration may be difficult to sustain, especially over unfamiliar media platforms.

Non‐pharmacological treatment modalities are recommended to manage behavioural disturbance in people with dementia. 25 26 

This is particularly salient given that delivering face‐to‐face or group non‐pharmacological interventions to reduce agitation, for example, music therapy or sensory stimulation, 27 may be impossible due to the difficulties in maintaining social distancing.

Any resurgence or development of behavioural difficulties may therefore require pharmacological interventions, and caregivers should be alert to the need to discuss concerns and treatment options with health care professionals.

Depression or low mood are common features of DLB 28 with depression more frequent than in AD. 29 Depressive symptoms also differ between DLB and AD with apathy and pervasive anhedonia significantly higher in people with DLB. 30 

Apathy often responds to stimulation from social activities and in the absence of these, is important to find alternatives, for example assisting with household tasks, baking or straightforward games.

Family caregivers can be encouraged to offer managed choices to reduce any perceived loss of control over how the day is spent.

If the person with DLB lives alone and seems disinclined to initiate available activities such as jigsaws, crafts or gardening, caregivers can be encouraged to prompt, enthuse and encourage via any accessible communication routes.

Resources to enhance activities can be ordered online and depending on the level of impairment, turn‐taking activities may be possible via video calls to maintain engagement.

Family caregivers should be advised to contact a health care professional if they detect a deterioration in mood as changes to medication may be warranted.

Reduced social stimulation, a lack of daytime routine, and less physical activity may exacerbate excessive daytime somnolence, a common feature of DLB, 31 and result in poorer night‐time sleep.

Where COVID‐19 guidelines permit, outside exercise can help to regulate this.

If the person with DLB is safe to go out alone or accompanied, and compliant with social distancing, a daily walk offers the benefits of both physical exercise and exposure to daylight for melatonin synthesis.

Psychological benefits include adding variety to the day, the stimulation of different surroundings and the opportunity to engage at an appropriate distance with passers‐by.

Where the weather and circumstances allow, sitting in the garden or at an open front door while maintaining social distancing may also be worthwhile.

Recurrent complex visual hallucinations are a common feature of DLB. They cause significant distress in around 50% of people who experience them, with fear and anger being the most common responses. 32 

They tend to occur in the same location, which is most often within the house, frequently the living room or looking out of the window. 33 

Worsening of visual hallucinations, often coupled with increasing confusion might herald an undiagnosed delirium or infection.

However while this possibility should be excluded, hallucinations may also increase in frequency and intensity with more time spent at home and in the rooms where they are typically experienced, particularly where combined with social isolation and reduced sensory input and stimulation from others.

People with DLB and caregivers should be alerted to this, and where the hallucinations are causing distress, be given the opportunity to discuss the range of treatment options.

Guidelines include both pharmacological and non‐pharmacological strategies 30 and caregivers can be advised to try distraction, reassurance and bright lighting to try to minimise the occurrence.

Rearranging the furniture to alter the location of any items causing misperceptions may help, as can trying to ensure that any corrective lenses, are clean, easily accessible and worn.

Delusions, another common feature of DLB may also increase as a result of anxiety or agitation, perhaps in conjunction with overheard or poorly understood conversations, or news reports that include unfamiliar scenes, such as people wearing personal protective equipment (PPE).

Family caregivers can be encouraged to balance their own need to keep informed with protecting the care‐recipient to avoid triggering or reinforcing this behaviour.

Including collateral information from family caregivers in the clinical assessment of neuropsychiatric symptoms is essential to diagnosis and management because people with DLB frequently lack insight regarding the extent of their impairment. 34 

It is important to find ways to facilitate this into telemedicine consultations even when caregivers live physically distant from the care‐recipient.

Many people with DLB incorporate what is on the screen into their delusions and the absence of the usual cues of surroundings, equipment or uniforms to make them aware they are talking to a health care professional may cause confusion and present an added challenge.

2.2. Challenges for family caregivers

Supporting someone with DLB poses a substantial burden on family caregivers. Compared with AD, caregiver burden in family caregivers of people with DLB is rated 30% higher on the Relative Stress Scale 35 and a major depressive disorder in the caregiver is significantly more likely. 36 

The COVID‐19 pandemic is likely to create multiple further difficulties.

Physical outcomes may include caregiver fatigue from the increased hours spent supporting the person with DLB with the everyday activities of living, particularly in spousal caregivers who may have age related physical limitations.

Additional personal care needs may arise where formal caregivers are unable to visit and routine appointments such as podiatry are unavailable.

Many families rely on respite from day centres or short‐term care home admission to reduce care giving hours and care demands to a manageable level.

The closure of these removes the opportunity for caregivers to ‘recharge’ and requires them to be constantly available. This may be particularly difficult where there is no foreseeable end in sight.

Mental health challenges for caregivers include managing their own anxiety and coping with uncertainty, including over the duration of isolation, whilst containing anxiety in their care‐recipient.

Finding ways to accommodate changes to dietary preferences in the face of shortages in essential food items may be stressful.

Difficulty obtaining regular prescriptions and appointments such as physiotherapy to maintain mobility may also be concerning for caregivers who are likely to be aware of the detrimental effects of being without these.

Feelings of anticipatory grief related to a DLB diagnosis contribute to caregiver burden 37 and may be heightened by anxiety about their family member contracting COVID‐19.

Caregivers with co‐morbidities which put them in a high‐risk group, may worry about becoming ill themselves, and miss the companionship and emotional support of friends and family while socially isolated.

They may experience poor sleep as a result of their own anxieties and disturbed sleep in the care‐recipient.

Finally caregivers may be disturbed by insensitive media coverage regarding access to critical care, unsure whether or how to undertake advance care planning conversations and nervous about taking responsibility for best interest decisions.

Where the person with DLB is in a care home, caregivers may be distressed by the lack of visiting opportunities and the effect of this on the care‐recipient. They may fear the spread of COVID‐19 from other residents and experience a lack of purpose without their normal visiting routine.

Both caregiver and care‐recipient may find the lack of physical touch through being unable to hug or hand hold difficult to manage.

Sending in personal items such as photographs, familiar scent worn by the caregiver or playlists may provide some comfort.

It is essential that caregivers of people with DLB feel well supported to enable them to maintain their caregiving role during the COVID‐19 crisis, and health and social care professionals can be sources of both practical and emotional support.

Guidelines such as the UK Royal College of Psychiatrists Standards for Memory Services 38 recommend that caregivers receive a person‐centred service that takes into account their unique and changing personal, psychosocial and physical needs.

This includes offering individual time with staff to discuss their own needs.

Wellbeing checks instigated by telephone or video call through clinical services such as memory clinics should therefore include caregivers’ needs in their assessments.

Suggestions to caregivers may include trying to concentrate on those things they can control, that is, making a contingency plan for if they get ill, keeping up good nutrition, and maintaining a daily routine rather than focussing on situations that they cannot control.

This may include limiting the time spent watching news updates.

They may be encouraged to consider how they have coped with previous challenging situations and whether they can adopt similar techniques again.

Practical solutions to pressing problems such as arranging volunteer shoppers and medication deliveries may be as important as offering psychological support.

Detrimental effects for caregivers may also be reduced through maintaining contact with their informal social networks, bearing in mind that where platforms such as video calls are unfamiliar, additional support may be needed.

Carers’ organisations and faith groups may be beneficial as may opportunities to ‘buddy’ other caregivers and so offer as well as receive support.

Accessing DLB specific advice and information from charities such as the Lewy Body Dementia Association (https://lbda.org) and the Lewy Body Society (https://lewybody.org) can also be encouraged.

2.3. Challenges for primary care/generalist services

During the urgent restructuring in response to COVID‐19, specialist services in hospital‐based clinics were suspended, and many people with DLB only had access to primary care.

Although some services were subsequently reinstated as telephone or video consultations, this highlights an important concern about how primary care teams can access specialist advice and feel equipped to provide proxy specialist care when the need arises.

Establishing links between health care professionals in these areas is vital to enable case discussions and requests for urgent reviews to take place, and to facilitate sharing of current practice. This could include distributing details of updated working arrangements and contact details in situations where normal services are undeliverable.

There are other routes by which generalist and primary care services can access information on the best management and care of people with DLB. Many countries employ dementia nurses and they are increasingly taking on proactive roles in the advising on the management of dementia in community settings.

In the UK, the first Admiral Nurse specifically for Lewy body dementias has recently been appointed 39 with a remit that includes supporting health care professionals through telephone advice and the development of training material.

A further source of DLB specific information for primary care and generalist services is available via the UK National Institute for Health Research (NIHR) funded Diamond Lewy website https://research.ncl.ac.uk/diamondlewy/.

The Diamond Lewy study aimed to improve the diagnosis and management of Lewy body dementia including DLB. Freely downloadable resources include assessments for recognising and diagnosing DLB and summary sheets and detailed recommendations for managing key symptoms.

These align with the most recent Consensus Report of the DLB consortium on the diagnosis and management of DLB. 40 41 They are ideally placed to guide health care professionals having undergone piloting and feasibility testing, and been evaluated as acceptable by clinicians working in general dementia services. 42


While the effects of COVID‐19 are widespread, it is important to recognise the challenges presented by the significant vulnerabilities associated with DLB.

There is a pressing need for research to study the impact of COVID‐19 on this population including ensuring that people with DLB are not excluded from studies because of their age, shielding protocols or their dementia diagnosis.

Utilising the person‐centred, problem‐solving approach highlighted here including recognition of the value of a multidisciplinary response can mitigate some of the adverse effects of COVID‐19.

This should enable people with DLB and family caregivers to have their health and psychosocial care needs met in the short term, and develop resilience to withstand future COVID‐19 related challenges.