This recently published article has a good, short summary of Dementia with Lewy Bodies (DLB). (Though the abstract mentions PDD, the summary focuses on DLB, not the two Lewy Body Dementias.) This is probably one of the best summaries I've seen. Of course the language is oriented to healthcare professionals.

Here are a few points in the DLB summary that caught my eye:

* "Compared to AD, there may be relative sparing of memory functions especially in the early stages of DLB."

* "Fluctuations in cognitive function with pronounced variations in attention and alertness can be difficult to evaluate ... but corroborative reports from primary caregivers can help to clarify these essential clinical features (eg, daytime drowsiness, prolonged staring spells, periods of marked confusion, disorganized speech). Cognitive fluctuations are reported across varying time periods, but generally take place for a minimum of 30 minutes and can last as long as several days."

* "Other common neuropsychiatric features include depression, apathy, and anxiety."

* "Agitation and aggressive behavior tend to occur late in the course of the disease."

* "There is often more axial rigidity and facial masking in DLB than is typically seen in idiopathic Parkinson’s disease."

Besides the summaries of the four most common dementia types, the remainder of the article is devoted to "multidisciplinary approaches to dementia care."

The full article is available at no charge online here:
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3104685/ --> HTML version
http://www.ncbi.nlm.nih.gov/pmc/article ... -4-125.pdf --> PDF version [note: I could not get the PDF version to load]

I've copied a few excerpts and the abstract below.

Robin



Here are DLB-related excerpts:

Dementia with Lewy bodies
"Dementia with Lewy bodies (DLB) usually presents in older adulthood between the ages of 60 and 90 years. The epidemiology of DLB remains to be fully elucidated along with potential risk factors for the disease, but to date no significant gender or ethnic differences in prevalence have been identified."

"DLB is a neurodegenerative disorder, thus progressive and functionally disabling cognitive impairment is a central feature. Individuals with DLB exhibit a combination of cortical and subcortical impairments with significant attentional deficits and executive and visuospatial dysfunction. Compared to AD, there may be relative sparing of memory functions especially in the early stages of DLB. A recent international consortium has resulted in revised criteria for the clinical diagnosis of DLB, incorporating new information about the core clinical features of the disease. These core features include fluctuating cognition, recurrent visual hallucinations, and spontaneous parkinsonism."

"Fluctuations in cognitive function with pronounced variations in attention and alertness can be difficult to evaluate and operationalize, but corroborative reports from primary caregivers can help to clarify these essential clinical features (eg, daytime drowsiness, prolonged staring spells, periods of marked confusion, disorganized speech). Cognitive fluctuations are reported across varying time periods, but generally take place for a minimum of 30 minutes and can last as long as several days."

"Visual hallucinations in DLB tend to be recurrent, vivid, and well-formed. The hallucinations tend to emerge early in the disease course, and are therefore a useful diagnostic feature. The content of the hallucinations usually consist of humans or animals, but can be more abstract in nature. Visual illusions and delusions, which typically have a paranoid quality, are also commonly observed. Auditory, tactile, or olfactory hallucinations are rare. Functional neuroimaging studies have demonstrated altered patterns of activation in the visual cortex, along with increased number of Lewy bodies in the anterior and medial temporal lobe of individuals with DLB who report hallucinations. Other common neuropsychiatric features include depression, apathy, and anxiety. Agitation and aggressive behavior tend to occur late in the course of the disease."

"Extrapyramidal signs, including bradykinesia, facial masking, and rigidity, are the most frequent signs of parkinsonism in DLB. Resting tremor is distinctly uncommon, and parkinsonism is usually bilateral and occurs with the onset of dementia. There is often more axial rigidity and facial masking in DLB than is typically seen in idiopathic Parkinson’s disease."

"An important suggestive clinical feature of DLB includes rapid eye movement (REM) sleep behavioral disturbances. Affected individuals often act out their dreams by screaming and kicking, which can cause injuries to themselves and those around them. The dreams tend to have a chasing or attacking theme, and their content usually matches the exhibited behavior. REM sleep behavior disturbances often begin years before the onset of other cognitive or motor symptoms."

"Other suggestive features of DLB include severe neuroleptic sensitivity, and low dopamine transporter uptake in the basal ganglia on functional neuroimaging. Additional supportive features that commonly occur in DLB include repeated falls and syncope, transient, unexplained loss of consciousness, severe autonomic dysfunction, hallucinations in other modalities, systematized delusions, relative preservation of medial temporal lobe structures on structural neuroimaging, reduced occipital activity on functional neuroimaging, prominent slow wave activity on electroencephalogram, and low uptake myocardial scintigraphy."


Pharmacotherapy for non-AD dementias
"DLB is a form of dementia that is not easily treated through the use of pharmacotherapy. Rivastigmine has shown some improvement in DLB patients, and low-dose clonazepam has been used for sleep disturbances. Psychostimulants, including levodopa and dopamine agonists, have been shown to improve cognition, apathy, and psychomotor slowing. Management of cognitive fluctuations in DLB has been difficult. Atypical neuroleptics have also been reported to be helpful for symptoms of delusions and agitation, and selective serotonin reuptake inhibitors (SSRIs) can be effective for the treatment of depression and anxiety in DLB patients."


Here's the abstract:

Journal of Multidisciplinary Healthcare. 2011;4:125-47. Epub 2011 May 15.

Clinical features and multidisciplinary approaches to dementia care.

Grand JH, Caspar S, Macdonald SW.
Department of Psychology, University of Victoria, Victoria, BC, Canada.

Abstract
Dementia is a clinical syndrome of widespread progressive deterioration of cognitive abilities and normal daily functioning. These cognitive and behavioral impairments pose considerable challenges to individuals with dementia, along with their family members and caregivers.

Four primary dementia classifications have been defined according to clinical and research criteria: 1) Alzheimer's disease; 2) vascular dementias; 3) frontotemporal dementias; and 4) dementia with Lewy bodies/Parkinson's disease dementia.

The cumulative efforts of multidisciplinary healthcare teams have advanced our understanding of dementia beyond basic descriptions, towards a more complete elucidation of risk factors, clinical symptoms, and neuropathological correlates. The characterization of disease subtypes has facilitated targeted management strategies, advanced treatments, and symptomatic care for individuals affected by dementia.

This review briefly summarizes the current state of knowledge and directions of dementia research and clinical practice. We provide a description of the risk factors, clinical presentation, and differential diagnosis of dementia. A summary of multidisciplinary team approaches to dementia care is outlined, including management strategies for the treatment of cognitive impairments, functional deficits, and behavioral and psychological symptoms of dementia. The needs of individuals with dementia are extensive, often requiring care beyond traditional bounds of medical practice, including pharmacologic and non-pharmacologic management interventions.

Finally, advanced research on the early prodromal phase of dementia is reviewed, with a focus on change-point models, trajectories of cognitive change, and threshold models of pathological burden. Future research goals are outlined, with a call to action for social policy initiatives that promote preventive lifestyle behaviors, and healthcare programs that will support the growing number of individuals affected by dementia.

PubMed ID#: 21655340 (see pubmed.gov for the abstract and a link to the full article at no charge)

Thanks Robin. Very informative.

Thanks Robin. This is a good summary indeed. One thing I want to say, however, is that my father, though in late stages now, has never had a characteristic visual hallucination, yet has had many auditory hallucinations. These auditory hallucinations accompany his delusions. For example, in the dementia care facility where is is now, he believes that some of the other residents are "mafia henchmen" who want to kill him. He has auditory hallucinations where he hears these residents saying very specific things about their plans to kill him like, "we have a bullet for Allen," etc. His lack of visual hallucinations are puzzling given the literature and also given that he has scored very low in his visuo-spatial functioning.

Anyway, just wanting to point out that symptoms can vary greatly, as we all know.

I don't know of anyone who didn't have visual hallucinations and had autopsy-confirmed DLB. I imagine it can happen since the diagnostic criteria don't require VH but it must be unusual.

Any chance the delusions (and accompanying voices) are caused by medication?

It's definitely not medication-related, as his delusions have been occurring for over a year now, long before he started any meds. His doctor at the USF Byrd Center has told us that not all LBD patients experience visual hallucinations, though the vast majority do. He also told us that we should probably expect him to have them eventually. One piece of anecdotal evidence—though it might be a bit strange posting it—is that I have always wondered about my own lack of visual-centered mental processing. I am a very auditory-centered thinker. I have words in my head all the time, and few images. Even the times in my youth when I consumed LSD and mushrooms with friends I was always the one who did not have visual hallucinations. The drugs certainly affected me, but not in the same way it affected my friends. My fiancé even today is flabbergasted by how little I appear to notice in my visual field. She calls me jokingly, "aesthetically impaired." I respond by telling her that what I lack in visual processing I make up for in other brain areas. I also say to her, "I never fail to appreciate your beauty, which is really what matters, right?" She accepts that.

So if my father is similar to me, it could be that because he doesn't normally think so much in visual ways, he isn't having so many visual hallucinations. Different people definitely think differently, and my dad was always a story-teller. He was an actor and he loved monologuing, both on stage and in his regular life. We're a wordy family, I guess. My sister is a lawyer. I'm quite intellectual also. Seeing my father this way it makes sense to me that his symptoms have been predominantly delusions and language impairment. Perhaps delusions can be thought of as "linguistic hallucinations." In that sense, people who are primarily auditory or wordy thinkers might express LBD symptoms in this sensory field or "thought field" rather than the visual field.

Just speculating here... but for sure for sure for sure my father's primary diagnosis is LBD. We went through a very long process with multiple doctors and specialists to arrive at this diagnosis. Everything but the visual hallucinations fits to a T.

Emanuel

Since:
1) a visual hallucination
2) an auditory hallucination

are both self reported symptoms?
have either been measured by objective means? can they be?

are they to be trusted?

all of this makes me think….how do you measure these?

I am not saying that either does not exist.
I am not saying to not believe self reported symptoms.

Is not communication a problem of this disease?
Is not perception of reality a problem of this disease?
Is not formulating an argument of a factual or perceived reality a problem of this disease?

….any absolutes or statistical accounting of this disease based on self reported symptoms are therefore suspect…..in my estimation….
in either direction….

Yes Bayou you are very right. What you say has been particularly prominent for my sister and I in assessing my father. My father throughout most of his life has made up lies to manipulate and get what he wants. Telling us he believes certain things or that he hears people saying specific things has to be seen in this light. However, we are pretty sure they are real delusions/hallucinations at this point.

One more thing I did not mention: Before we admitted my father into a facility, he believed men were coming into his home at night. He did, now that I recall, tell us that he *saw* these men in his home on a few occasions. His nighttime caregivers told us also that he insisted they were there and that he even went around looking in the closets to find them. So this might be visual hallucinations that I forgot about.

Also, there were a number of occasions where I was with him at night and he was looking outside his bedroom window, across the yard and into the neighbor's window where he believed he was seeing his ex-wife, whom he believed had moved into the neighbor's house because she was having an affair with him. He would point to this black shadow inside the neighbors window and insist it was his ex-wife. "I don't know Dad," I would say, "it looks like a shadow to be. It could be anyone or it might not even be a person." That never convinced him. So this was a case of a sort of visual illusion (not full on hallucination) that was sparked by his delusions.

Emanuel,
I think your self-observations are fascinating. Your theory about the connection between your own way of thinking and your father's makes a lot of sense.
Robin

Coy definitely had visual hallucinations early on. None was disturbing to him. They were not frequent but they did exist. His were animals or people. This helped Dr. Schenck suspect Lewy Body right away and refer him to Dr. Boeve, so I am glad he had a few. But they were not a dominant feature and they did not persist after the first few months (although the fact that they ceased might be drug related).

The speculation that people who are not strongly visual might be less likely to have visual hallucinations seems very logical (and interesting) to me.

Less visual? Maybe I do not understand the meaning of this thread but If you are speaking of ability to see, Mr Bobby [my husband] began seeing children and animals in 1997 and 98 when his vision became poor. After 1999, he was totally blind. Could not even see a bit of light, however, he continued to see visions until he died in 2009. As I have said before he enjoyed the people and it was only when they turned on him as animals, fire, and redfaced mean men that I gave him medication for relief and he would then sleep. The reason I did not try to eliminate the friendly visions was because if he did not see the visions, he saw nothing but black and he would then beg me to turn on the lights... I could not bear that request it was much better to let him enjoy his visions. Perhaps I was wrong but he seemed much happier that way and there was alway a time all the way up until the last that he was the same as he had always been. Briefly he would kiss my hand and thank me for all I did. The next sentence would be to tell the people in the room all about me and tell me about them. He would be in my reality and his reality both at the same time. Strange. During the ten years, we learned to live with it.
We accepted him that way and he accepted his life.

And, yes, [I'm repeating myself] he was diagnosed post-mortem as having Lewy Body Dementia.

Extremely interesting, Dorthea. If a blind man sees visions, is that delusions or hallucinations? I sure don't know.

I think by non-visual we were thinking more along the lines of not thinking in images, perhaps not being particularly observant of what he's looking at, thinking more in words and sounds, etc. Since Mr. Bobby was not blind from birth he could very well have been a very visually oriented person.

Jeanne, in that context, he was an extremely visual person. We would sit in the swintg and he would point out a squirrel or a bird or plane and try to get me to see it. His life work was Inspector/ appraiser of homes. Detail was very important to him and he never missed anything just by walking through a room. He used his eyes and remembered what he saw. He also said my eyes turned green when I became angry... and then he would laugh at me saying he knew it was time for him to shape up.

DrP

Dorthea - your description of your husband's "seeing" things even after he was blind was very interesting to me. I get occular migraines, and sometimes when I am trying to sleep off a migraine, the visions are so much brighter (and worse) when my eyes are closed I feel like my retinas are going to burn because of the bright lights. So I have to open my eyes to get the visions to tone down in intensity. I know this has nothing to do with LBD, but I sure wish I could have talked with your husband about his visions when he was having them! Thanks for sharing. Lynn

Dorthea, your description of your last years with your husband are very moving. Thank you for sharing them. It is so different from my father's current experience it reinforces for me the importance of baseline personality in how dementia plays itself out. Symptoms can be so different depending on who has them.

Emanuel,


this brings to mind what I was told by my counselor/therapist at Habit…Dr. Glenn Smith http://www.mayoclinic.com/health/biography/SB00028

….that…studies have shown: a lot of features of the disease are just amplifications of past personal traits…whether or not those traits were obvious to the patient and/or others in their lives in the past…

in one of the sessions…a personal issue of mine was being discussed….
both me and my daughter (who attended with me) said I did not have that trait in the past….

after dwelling on it that night….yes…it was true….I had been good at hiding or masking that from others earlier in life….even my adult child…who did live her whole childhood in the same household with me….
I actually had been able to turn that….now negative trait…..back then into a positive at work, early in my work and up to falling off the baseline cliff (when it was looked at as being out of the box)….and an annoyance to my then, wife (I am sure)…

until….it became…and is…a very negative thing in my life now….which I am trying to control now…..but later….won't be able too...