PDSG Booklet
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Val
- Val's Journey
Booklet - 2003

Dementia with Lewy Bodies (DLB) by Dr Jonathon Schott, Dementia Research Group


What is it?

Dementia with Lewy Bodies (DLB) is one of the more common causes of dementia. Like other dementias (eg Alzheimer’s disease), it is caused by an accumulation of abnormal proteins within the brain, which subsequently lead to death of brain cells, and brain shrinkage. In the case of DLB, the abnormal protein is the “Lewy body” first identified in 1912. The disease may also be referred to as Diffuse Lewy Body Disease, Dementia associated with cortical Lewy Bodies, the Lewy Body variant of Alzheimer’s disease, or Lewy Body Dementia..

Who gets it?

In common with many dementias, DLB is a disease associated with increasing age, and it is rare under the age of 65. It is unclear why certain people get DLB, and it is currently not possible to predict who will develop the disease. Men appear to be slightly more at risk than women. It is likely that the disease is caused by a combination of factors, both genetic and environmental. There is some overlap between DLB, Alzheimer’s disease and Parkinson’s disease, and there is currently research looking at genetic influences these diseases may have in common. At the moment there is no gene test available for DLB, and the disease is not thought to run in families.

What are the symptoms?

There are four major features of DLB: memory problems; hallucinations; “slowing up”; and fluctuation.

The memory problems are often quite similar to Alzheimer’s disease. Patients have difficulties in remembering day-to-day events, and the memory is often worse for recent events than events of the distant past. The memory problems get worse over time. Hallucinations are very common in DLB. The hallucinations are often of silent people or animals, and appear very vivid and real. Patients generally do not find these hallucinations threatening, but can find them disturbing. In addition, patients may experience problems with identifying objects or people, and in some cases even their own spouse. Patients with DLB generally “slow up”, and develop symptoms that look like Parkinson’s disease. Thus they tend to walk more slowly, have a change in their facial expression, become more stiff or rigid, notice a change in their handwriting, and may develop a tremor of the hands. There are often very noticeable fluctuations in symptoms in DLB. On some days patients may be very active, whilst on others they may be very slow and forgetful. Other symptoms may include: an increased tendency to falls; faints; delusions (having fixed abnormal beliefs); confusion; and vivid dreams.

How do doctors diagnosed DLB?

The diagnosis of DLB is based on the presence of the features mentioned above, after exclusions of other forms of dementia. In order to make the diagnosis, the doctor will generally take a detailed account of the problems from the patient and someone who knows them well, and perform an examination. Some tests may be performed (although there is no one test that will accurately diagnose DLB). These may include blood test, a brain scan, a brain wave test (EEG), and some detailed memory tests.

What is the prognosis?

The progression of DLB is very variable, but the normal life expectancy is similar to Alzheimer’s disease (around 5 to 7 years from diagnosis).

Are there any treatments?

There are no curative treatments for DLB. There is some evidence that some of the drugs used for Alzheimer’s disease may be useful in DLB. These include Aricept (Donepezil), Exelon (Rivastigimine), and Reminyl (Galantamine). However, these drugs are not widely available for DLB in this country. Some patients with DLB can become depressed, and may respond well to antidepressants. Sometimes treatments for Parkinson’s disease may be useful if patients get very rigid, although this can make confusion worse. Physiotherapy may also be useful.

It is important to note that many prescription drugs commonly given for hallucinations can make DLB much worse. It is very important that these drugs (neuroleptics) are not given to patients with DLB. It is therefore essential that if a patient with DLB is admitted to a hospital or sees a new doctor, that you inform the medical staff of the diagnosis, so that these drugs are not prescribed.

Where can I get more information?

The Alzheimer’s society has useful information on DLB. An information sheet can be requested via their helpline (0845 300 0336, open 8.30am to 6.30pm, Monday to Friday), or downloaded from the internet at: http://www.alzheimers.org.uk/about/info_lewybody.html.

Dr. Jonathon Schott,
Dementia Research Group


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