There appears to be some confusion both in the caregiving and medical community about what symptoms are REQUIRED for a diagnosis of LBD. I hope this overview will be helpful to you!

First, let's review terminology before we get to symptoms. There are two clinical diagnoses that fall under the umbrella term of 'Lewy body dementia'.

1. "Dementia with Lewy bodies" (DLB) is diagnosed when cognitive, psychiatric and sleep disorder features appear BEFORE or around the same time as the parkinsonism. (While parkinsonism is a symptom of DLB, it is not required for a diagnosis of DLB.)

2. "Parkinson's disease dementia" (PDD) is diagnosed when Parkinson's symptoms exist for at least a year (but usually longer) before cognitive and psychiatric symptoms appear.

Lewy body disorders include Parkinson's Disease, DLB and PDD, and are considered a spectrum disorder becuase they all have Lewy bodies (misfolded proteins called alphasynuclein) dispersed throughout different parts of the brains.

The location of the Lewy bodies determines which symptoms the patient experiences. As the disease progresses, DLB and PDD patients experience more symptoms and upon autopsy, the brains are indistinguisahble from each other. Without clinical records that document the course of the disease, a neuropathologist cannot tell the difference between the two at autopsy.

The diagnostic criteria for DLB was established in 1996, and updated in 2005. Diagnostic criteria for PDD is currently being developed, but the symptoms are essentially the same, just appearing in a different order.

That leads us back to symptoms...

1. The central feature of LBD is dementia, which is required for an LBD diagnosis.

Beyond that, patients can have different combinations of other LBD symptoms to receive a 'possible' or 'probable' LBD diagnosis. (Like Alzheimer's, right now medical science can only confirm LBD upon autopsy.)

2. The core features of LBD are a) fluctuating cognition, b) hallucinations, and c) parkinsonism. ONE of these symptoms (plus dementia) can lead to a possible LBD diagnosis. TWO of these symptoms (plus dementia) can lead to a probable LBD diagnosis

3. The supportive features of LBD are 1) REM behavior disorder, 2) extreme sensitivity to neuroleptics, and 3) abnormal results of a SPECT or PET (specialized brain imaging scan being done in specialized research centers). Dementia plus any ONE of these symptoms can justify a possible LBD diagnosis.

Dementia plus one core and one supportive feature can also lead to a probable LBD diagnosis.

So, there you have the many combinations of LBD diagnoses. It is important for doctors and families to understand that each patient's disease course is unique, and that not all symptoms will appear in the same order, or at the same time.

For those who would like to read a more detailed description of the symptoms, please read an overview of LBD, found at http://www.lewybodydementia.org/symptoms.php

In hope,
Angela Taylor
LBDA

Angela --
Thanks for the very clear outline. I have a question about the above. Will someone with Dementia with Lewy Bodies unavoidably develop parkinsonism at some point as the DLB progresses? Would that be because the Lewy bodies themselves will eventually develop in the areas of the brain that are assocaited with parkinsonism? Thank you!

Renata,

I can't answer that with 100% confidence, so I've asked on of our Scientific Advisory Council members to answer your question. He will either post an answer here, or reply to my email.

I'll let you know as soon as I hear something,
Angela

This is an interesting question. Parkinsonism is not required for a diagnosis of LBD, although most patients eventually manifests some parkinsonian signs.

The most common PD-like signs are:

1. Bradykinesia: this is a slowness in starting and carrying out a movement. Examples would be trouble going up stairs, getting out of a chair or the car, seemingly stuck to the floor when walking, and very slow motor reaction times.

2. Gait and balance abnormalities: this is usually noticed as a stooped or flexed slow walk with shuffling of the feet and may increase with speed the longer distances (called festination). The arms usually do not swing while walking and may be carried in a funny position or angle. Balance is poor and the patient has an increased risk of falling.

3. Rigidity: an increase in muscle tone during passive range of motion.

Tremor is not commonly seen in LBD unless Parkinson's disease preceded the dementia by several years.

Other features include a decreased facial expression, decrease blinking, small, illegible handwriting, trouble looking upwards, drooling, and dry skin (especially on the forehead).

In fact many older adults may have a few of these signs and parkinson-like features may be seen in up to 25% of patients with Alzheimer's disease and a fair number of people with frontotemporal dementia. So the parkinson signs are not specific for LBD, just more common.

I probably see 15-20% of patients with LBD that have very few if any signs of Parkinson's even in the late stages of the disease. The more severe the parkinson-like features, the more frail the patient is particularly because of the risk of falling.

There are probably several reasons why parkinson signs develop in LBD (and other dementias) but the most common reason is that the pathology of dementia (Lewy bodies in LBD, neurofibrillary tangles in AD and FTD) develop in the regions of the brain responsible for coordinating movement. This region is called the substantia nigra ("black substance") and is an important site of dopamine production for smoothing and initiating movements. Other dopamine producing regions are also affected by dementia pathology and probably contribute to some of the behavioral disturbances (hallucinations, agitation, etc) that are common in LBD.

This long-winded answer to the question essentially means that most but not all LBD patients will develop parkinson like signs but it is not required. But I think that most physicians are still most comfortable seeing parkinsonism before diagnosing LBD.

Jim

Thank you both, Angela and Jim, for clearing that up!

I asked the forum before about going for a second opinion re: Mother's symtoms/diagnosis, and you said YES. Her primary MD referred her to another neuro, I called ahead of time to see if he dealt w/ LBD, they said "yes". He said that he doesn't think it's LBD beause he sees no PD. I asked "does LBD always come w/PD?", and he said not always. She got a 3 on the Mental Test (she had gotten a 13 about 2 yrs. ago). He says he sees dementia, but wants to know if something else is going on, like if she's had a stroke, so he ordered an MRI of brain, an EEG, and blood work. Also started her on Exelon patch. He said, anyway whether it's LBD or AD, they are treated the same way! I said I understand that you can take an LBD symtom & treat it to try to improve the quality of life. The one which most concerns me is the completly incoherent speech, she only says one lucid sentence all day, the rest is word salads. He said that's what Exelon is for.
I need you opinions, please. I am trying to help my poor Mother, but I don't want to put her thru unnecessary tests because every trip out of the house is stressful. I will go along w/his orders for now because: she didn't do well on Aricept or Namenda before, never tried any other "dementia med", and because the last MRI was more than 5 yrs. ago. Sometimes it's very hard knowing the right thing to do.
Note to the lady who said she feels guilty for not going to see her LO more often: your LO is lucky to have you, keep up the good work.
Thank you, and good luck to all.
Pilar

Pilar. I am enclosing the DX criteria used for LBD, maybe this will help you more, as to the Dr saying LBD and and Ad are treated the same I have to disagree, they are not the same. LBD presents different problems, Here is a web site for comparisons, just scroll down and you will see it.
http://www.aafp.org/afp/20060401/1223.html

The tests the Dr has order are good they will help rule other things out.
Good Luck!
DIAGNOSTIC CRITERIA - Central and Core Features for clinical diagnosis

CENTRAL FEATURE OF LBD(must be present for diagnosis of LBD)
- Progressive dementia ? Impairment of *activities of daily living (cognitive impairment) *Activities of Daily Living (ADL) Personal care activities necessary for everyday living such as eating, bathing, grooming, dressing, mobility in home and toileting (continence).
Instrumental ADL - Activities related to independent living and include preparing meals, taking medication, managing money, getting to places beyond walking distance, doing laundry, shopping for groceries or personal items, performing light or heavy housework, and using a telephone.

CORE FEATURES OF LBD (PROBABLE LBD may be diagnosed with the presence of dementia PLUS TWO core features, OR one core feature and one suggestive feature).
- Fluctuating cognition or alertness are periods of time when cognition and arousal are near normal in contrast to other periods of more marked confusion or hypersomnolence. (cognitive impairment or unknown combination of neurochemical alterations and possibly one or more sleep disorders)
- Recurrent complex (well defined) visual hallucinations. Profound distortion in a person's perception of reality, typically accompanied by a powerful sense of reality. (neurophsychiatric feature)
- Parkinsonism (motor dysfunction)

SUGGESTIVE FEATURES OF LBD (Possible LBD may be diagnosed with dementia plus either one core or one suggestive feature)
- Severe sensitivity to neuroleptics (anti-psychotic drugs) occurs in up to 50% of LBD patients. These medications can worsen the Parkinsonism and/or decrease the cognition and/or increase the hallucinations. Neuroleptic Malignancy Syndrome, a life-threatening illness, has been reported in persons with Lewy Body Dementia.
- REM (rapid eye movement) sleep behavior disorder (RBD), (sleep disorder)

================================================================================================================================================================

CATEGORIZING LBD SYMPTOMS

Five categories of clinical features that may be present in LBD

Cognitive Impairment
Neurophsychiatric Features
Motor Dysfunction (Parkinsonism)
Sleep Disorders
Autonomic Nervous System (ANS) dysfunction

1. Cognitive Impairment:

o Executive dysfunction; difficulty understanding complex or multi-step instructions
o Episodes of disorganized speech
o Disoriented about the time or present location
o Bradyphrenia (slowness of mental processes)
o Visuospatial impairment; depth perception and object orientation; directional sense impairment and geographic disorientation (lost while driving, difficulty navigating in shopping center or own homes)
o Verbal blocking; looses train of thought in the middle of a sentence or conversation.
o Short-term memory; decline in ?active? memory (15-30 seconds)
o Misidentification errors involving people; failure to recognize spouse or children

2. Neurophsychiatric Features:

o Hallucinations: visual (sight) auditory (sound), tactile (touch) and olfactory (smell).
Sensory perception experienced in the absence of an external stimulus.
o Systematized delusions; Capgras syndrome (delusions): belief that a known person has been replaced by an identical looking imposter; non-recognition of mirror image
o Illusions; misperception of an external stimulus; (perceiving chairs, lamps, or mailboxes as people or animals)
o Anxiety, depression
o Anger, sadness
o Agitation, aggressive behavior
o Apathy (lack of emotion, motivation, or enthusiasm)

3. Motor Dysfunction (Parkinsonism):

o Tremors (often postural and symmetric, resting tremor less common)
o Rigidity (stiffness of the limbs and trunk; resistance to movement)
o Facial impassivity
o Bradykinesia (slowing down and loss of spontaneous and automatic movement; ability to start and continue movements)
o Shuffling gait; Stooped posture
o Repeated falls from postural instability or impaired balance and coordination
o Difficulty with fine motor skills (tying shoes and buttoning)
o Dysphagia (swallowing difficulties)

4. Sleep Disorders:

o REM (rapid eye movement) sleep behavior disorder (RBD), including acting out dreams, yelling, flailing limbs, nighttime insomnia, daytime drowsiness
o Restless Leg Syndrome (RLS)
o Excessive daytime somnolence (EDS) (an inability to stay awake when sedentary)

5. Autonomic Nervous System (ANS) dysfunction:

o Orthostatic hypotension, (low blood pressure upon standing) dizziness, light-headedness
o Transient, unexplained loss of consciousness, syncope (fainting), vertigo, falls
o Weakness, fatigue
o Decreased sweating and heat intolerance
o Urinary dysfunction (frequency, urgency and incontinence)
o Constipation, diarrhea, and impotence
o Coat-hanger pain (head and neck)
o Weak or hoarse voice

Irene:
Thank you for your reply. I do have to check off all of Mother's symtoms and show the list to the new neuro because he did not ask enough questions to know where she is, so how is he sure that trying Exelon is the first thing he should do? I guess it's a trial & error treatment? He may not be the right MD to deal w/this. Boy, how aggravating can this be?!
I appreciate your help.
Pilar

hello everyone...as I read all the signs and symptoms of LBD..I am confused now..I am just a new member and I have a friend who had LBD since 2004 and as of now his cognitive function and reasoning and judgement are doing pretty well as I read all the symptoms of LBD I cant find any of those symptoms to him but instead more of Parkinsons disease if he had this LBd since then by this time you think some of the synptoms are showing now..we always play a trivia game and I am so impressed that he can answer quickly the question from the past..he is really much aware of what is going on around the nursing home and for me he seems like a normal person for me when we are talking his body is very frail and complaint a lot of tiredness having a hard time of getting up in bed most of the time his appetite is good and sleep well but getting up most of the time at night bec.of an urgency to go to the bathroom.His doctor told him that theres no such information about his condition but I was the one who had this compassion to help him and gather more support and information.I just feel bad that his family wasnt that too helpfull for him at this times he needed it most.

Please help us and any feedback and support you will extend to me is highly appreciated.THANK YOU VERY MUCH..and GOD BLESS YOU ALL!

If your friend doesn't have dementia, he doesn't have LBD.

Can you print off the diagnostic criteria and speak with his MD about them?

Fherly,
Lewy Body Dementia can be with a person for years before sudden symtoms begin, such as Cognitive decline or Fluctuations of personality and mood swings. The biggest worry is to watch what meds your friend is taking IF ..he does come up with a LBD diagnosis. Good luck to you and God bless you too.

hi pilar, this is my first time on here, iread with intrest about your mum as my hubby has just been diagnosed with possible lewy body demetia with his parkinsons disease. now he had pd for quite a few years before it was found, i had to point the doctoer in the right direction. but this last 18 mths, he`s had the same symtoms as you are saying about your mum, so i got him into the memory assesment program with the mental health people and he had all sorts of test done in his own home because like your mum he dont like going out to see others. they also gave him a nother mri scan and it showed atrophy in the frontal lobe and in some other parts of the brain, a consultant is coming to see him one more time on wed 6th oct, to tell us the results i will let you know. so you get your mum into the memory assesment program whith the mental health people and get it sorted goog luck tinytim

thank you angela, i think my husband has parkinsons disease but also lbd as well he has seen his consultant pchiatrist at home and he said he thinks it is lbd cant be sure like you said only at autopsy. but he has the cognitive and rem andbad dreams and also some part of the day he is slightly better what do you think tinytim

Have you looked at the diagnostic criteria? Having RBD (REM sleep behavior disorder) and parkinsonism are insufficient for a diagnosis of Lewy Body Dementia.

The doctor has not been willing to diagnose my husband with LBD yet. He's determined AD for now, however, I disagree. I have been keeping a journal and have shared it with the doctor. He's familiar with LBD and the dangers of some drugs for dementia patients so I don't have to fight that. His first neurologist gave us Aricept and sent us on our way. Recommended a CAT scan but my husband wouldn't do it. He's not a doctor person and getting him to the neurologist in the first place was a years' long struggle. After changing meds to Namenda (husband said Aricept made him urinate all during the night), the doctor said see you in a year. He prescribed celexa for depression. Big mistake. It made my husband get gradually worse and I had to read a lot before I figured out the anti-depressant was causing some of his problem. Then he finally agreed to the CAT scan and doctor said he had age related brain atrophy. Long story short, we have a new Neurologist who is taking more of an interest in him. He did more extensive blood work to determine my husband has B12 deficiency. I'm giving him shots now. Doc said there may be a reversal in his dementia but didn't say how long it would be before we should notice anything. He seems to be having more hallucinations but understands simple directions once in awhile, but not always. We have been doing shots, one for three days, now we are on the one per week cycle, so it hasn't been that long. I'm not sure how many of my husband's symptoms could be related to the B12 deficiency. That's my question if anyone knows.