Lewy Body Dementia (LBD)
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Synonyms:
- Lewy Body Dementia or Lewy Body Disease
- Diffuse Lewy Body Dementia
- Senile Dementia of Lewy Type
What is Dementia With Lewy Bodies?
Dementia with Lewy bodies (DLB) is one of the most common types of progressive dementia. The central feature of DLB is progressive cognitive decline, combined with three additional defining features:
- Pronounced “fluctuations” in alertness and attention, such as frequent drowsiness, lethargy, lengthy periods of time spent staring into space, or disorganized speech;
- Recurrent visual hallucinations, and
- Parkinsonian motor symptoms, such as rigidity and the loss of spontaneous movement.
People may also suffer from depression.
The symptoms of DLB are caused by the build-up of Lewy bodies – accumulated bits of alpha-synuclein protein -- inside the nuclei of neurons in areas of the brain that control particular aspects of memory and motor control. Researchers don’t know exactly why alpha-synuclein accumulates into Lewy bodies or how Lewy bodies cause the symptoms of DLB, but they do know that alpha-synuclein accumulation is also linked to Parkinson's disease, multiple system atrophy, and several other disorders, which are referred to as the "synucleinopathies." The similarity of symptoms between DLB and Parkinson’s disease, and between DLB and Alzheimer’s disease, can often make it difficult for a doctor to make a definitive diagnosis. In addition, Lewy bodies are often also found in the brains of people with Parkinson's and Alzheimer’s diseases. These findings suggest that either DLB is related to these other causes of dementia or that an individual can have both diseases at the same time. DLB usually occurs sporadically, in people with no known family history of the disease. However, rare familial cases have occasionally been reported.
Is there any treatment?
There is no cure for DLB. Treatments are aimed at controlling the cognitive, psychiatric, and motor symptoms of the disorder. Acetylcholinesterase inhibitors, such as donepezil (Aricept®) and rivastigmine (Exelon®), are primarily used to treat the cognitive symptoms of DLB, but they may also be of some benefit in reducing the psychiatric and motor symptoms. Doctors tend to avoid prescribing antipsychotics for hallucinatory symptoms of DLB because of the risk that neuroleptic sensitivity could worsen the motor symptoms. Some individuals with DLB may benefit from the use of levodopa for their rigidity and loss of spontaneous movement.
What is the prognosis?
Like Alzheimer’s disease and Parkinson’s disease, DLB is a neurodegenerative disorder that results in progressive intellectual and functional deterioration. There are no known therapies to stop or slow the progression of DLB. Average survival after the time of diagnosis is similar to that in Alzheimer’s disease, about 8 years, with progressively increasing disability.
What research is being done?
The National Institute of Neurological Disorders and Stroke (NINDS) conducts research related to DLB in laboratories at the NIH and also supports additional research through grants to major medical institutions across the country. Much of this research focuses on searching for the genetic roots of DLB, exploring the molecular mechanisms of alpha-synuclein accumulation, and discovering how Lewy bodies cause the particular symptoms of DLB and the other synucleinopathies. The goal of NINDS research is to find better ways to prevent, treat, and ultimately cure disorders such as DLB.
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More Information
Clinical Trials for Dementia With Lewy Bodies (NIH-Listed):
Source:
National Institute on Aging
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Margaret,
There is a book available at Amazon.com that I wrote while my husband suffered from LBD (DLB) I had journaled for the 3 1/2 years, and had it published to help educate as well as encourage caregivers of dementia patients.
THOUGH HE SLAY ME; Our Experience with LBD, published by Xulon Press. by Anne Hartman
I hope it will help you.
Anne
Dear Linda and Marge,
Thanks for your posts below.
See my reply and more links for more information on the "Ask Nurse Dina" forum. You can get there by going to the top of this page, select the green tab FORUMS-->ASK NURSE DINA.
My husband Ernie was diagnosed with Dementia & Alzheimers about seven years ago. He is going to be 98 in May. After reading your article on Lewy Body Dementia it hit me in the head like a brick. I am his only care giver and have noticed many different things happening that no body could give me answers for. Lindas article gave me so much insite and a lot of answers. Like the numbness going on this has started about two months ago. One of the answers to that was he just does not remember what he feels. Two weeks ago he was sitting in his recliner and told me his right side was going numb. I checked his vital signs and they were all good. Then the numbness went away. Tonight his right leg was going numb, from his knees to his feet. Then he felt a pain in his leg and that went away a short time later.This numbness he can't explain more than it feels funny. He is very active and ofcourse walks and walks. There are nights we are up 24 hours because he thinks he just got up from sleeping all night. He does talk and talk sometimes making no sence. He can eat three breakfasts becfause he forgets he has eaten. Ofcourse I could go on and on, but I thank you so much for Linda talking about her husband.
Please any help you can give me, (I think I am loosing my mind) I would love it. Are there any other care givers that find it hard and feel like they are loosing it? Another thing is he will tell me he is blank in the head. He will also tell me he is dying and I can see it. Does any one know of any last stages to look for? Marge 2 margaretshay@att.net
My husband was diagnosed 3 years ago with Alzheimers but reading this article has me wondering if he may be misdiagnosed. In the past several months we have been looking for answers to why he is having sporatic periods of time in which he grows numb starting from the top of his head and moving through his body to his toes. He also has lost reflex from the knees down, falling frequently and finding it difficult to use his legs. He says they are just stiff and he cannot move them. The dementia began after he had quadruple bypass surgery. During his 11 days in the hospital, he never understood where he was, why he was there, had hallucinations and was totally out of his head. They also told me 'it sometimes happens" and brushed off my concerns. After that time, his memory and behavior began to decline and was eventually diagnosed with Alzheimers.
He has undergone a number of tests in the past several months in an attempt to find a reason for his symptoms. He had a CT scan for seizures and strokes which showed that was not happening or the cause. The neurolgist thinks it is because his heart is so weak (15% ejection refraction) but his cardiologist states it is not. He has been tested for diabetes and thyroid and all tests come back ok.
He is 63 and is on Namenda, Aricept and Axona. Would his symptoms be in line with what one would see with Lewy Body Dementia?
Looking for answers!
Linda
A Caregiver's Guide to Lewy Body Dementia is a great resource book for any Lewy body disorder caregiver. It is written in everyday language and covers everything from what it it, to symptoms to treatment to caregiver issues.Personal stories illustrate the information. Caregivers say that these personal stories are much like their own. You can get it at the LBD Book Corner: http://lbdtools.com/store.html