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Lewy Body Dementia: Introduction

Did you know?

As many as 40% of people who have Parkinson's disease will develop dementia. Many of these individuals develop Lewy bodies in parts of their brain. Others may also exhibit some of the symptoms of Alzheimer's disease and develop depression as well (Kalapatapu & Swanberg, 2009).

People with Lewy body dementia have a progressive decline in their memory and ability to think; similar to Alzheimer’s disease. However, the cognitive ability or alertness of a person with Lewy body dementia is more likely to fluctuate from one moment to the next, which is not like Alzheimer’s disease. They also often have visual hallucinations (seeing things that aren’t there) and delusions (believing something that is not true). On the surface, people with Lewy body dementia often have problems with movement that resemble Parkinson’s disease. This is because the same structures of the brain are affected in Lewy body dementia and Parkinson’s disease.

How Common Is Lewy Body Dementia?

Dementia with Lewy bodies is the third most common type of dementia after Alzheimer’s disease and vascular dementia. It is estimated that it affects 1.3 million individuals and families in the United States (LBDA 2010). Lewy body dementia is progressive, like Alzheimer’s disease. This means that with current treatments, individuals who have it get worse with time in terms of function and ability.

Other Names

There are several subtypes and different names for Lewy body dementia such as:

  • Diffuse Lewy body disease
  • Cortical Lewy body disease
  • Senile dementia of Lewy type
  • Lewy body variant of Alzheimer’s
  • Parkinson’s disease with dementia

The last two types on the list are forms of Lewy body dementia that occur within patients who also have Alzheimer’s disease or Parkinson’s disease, respectively.

More About Causes, Symptoms, and Diagnosis

Causes, risk factors, and symptoms of Lewy body dementia are somewhat different than other forms of dementia. Follow the links below to learn more.

More About Treatment

There is no cure available for Lewy body dementia at this time. Currently, there are also no medications approved by the FDA that specifically target this form of dementia. However, many individuals with the disease seem to benefit from the use of cholinesterase inhibitors, such as
Aricept, Razadyne, or Exelon.

Cholinesterase Inhibitors

Cholinesterase inhibitors are a group of drugs commonly prescribed to individuals with Alzheimer’s disease and other forms of dementia in order to slow the disease. For individuals with dementia, brain function decreases in part because their brain cells are no longer able to communicate with one another as well as they used to. Cholinesterase inhibitors act to increase levels of the neurotransmitter acetylcholine, a chemical that helps brain cells (neurons) communicate and work better. In practical terms, you may find that your loved one may be better able to remember names and details or perform activities with fewer problems when taking these medications.

There are three main cholinesterase inhibitors on the market:

  • Aricept® (generic name: donepezil)
  • Razadyne®, formerly known as Reminyl (generic name: galantamine)
  • Exelon® (generic name: rivastigmine)

Cognex® (generic name: tacrine) is less commonly prescribed due to its serious potential side effects.

These medications are typically prescribed to individuals in the early to middle stages of dementia. Aricept® was recently approved to treat severe dementia as well. It is important to remember that they only slow the progression of dementia and Alzheimer’s disease; they do not stop or reverse their course. Additionally, as an individual’s dementia advances, these medications are not able to balance out the damage that has already occurred. These medications typically help for only months to a few years.

In general, individuals who use cholinesterase inhibitors experience few side effects. The most commonly-experienced side effects are gastrointestinal problems, such as nausea, diarrhea, vomiting, and loss of appetite.

These drugs, originally developed for persons with Alzheimer’s disease, help improve the brain’s ability to function. In fact, these drugs may even be more effective for Lewy body patients than for Alzheimer’s patients. Parkinson’s disease medications, such as Sinemet® and Stalevo®, may also be prescribed in the event that the person has increasing trouble with movement.

Antipsychotic drugs should not be taken by persons with Lewy body dementia unless otherwise directed by a physician. Even though these medications can help manage hallucinations, in Lewy body patients, these drugs can make movement problems worse.

Apart from the differences already noted, approaches to diagnosis and treatment of Lewy body dementia are similar to those of other forms of dementia. Follow the links below to learn more.

Suggestions for Caregivers

The most important thing to realize when caring for someone with Lewy body dementia is that you need to be flexible. Your loved one’s symptoms may change from day to day, becoming better or worse, and this can be difficult for you and others to explain and handle. Remind others that your loved one is not simply "acting up."

As Lewy body dementia develops, your loved one will also have an increasingly difficult time maintaining balance and moving safely. Some caregivers find that suggesting the use of a cane or a walker can be helpful. Additionally, there are several things you can do around the house to make sure that your loved one is able to move about safely and easily in order to prevent future accidents.

As with Alzheimer’s disease, Lewy body dementia will continue to progress and reduce your loved one’s abilities to make appropriate decisions. Be sure to review our pages on legal and financial issues to learn what can be done before your loved one reaches the later stages of the disease.

View References

Kalapatapu R, Swanberg M. eMedicine. Parkinson Disease Dementia. Available at http://emedicine.medscape.com/article/289595-overview. Retrieved March 31, 2009.

Lewy Body Dementia Association, Inc. (2010). What is LBD? Available at http://www.lbda.org/category/3437/what-is-lbd.htm. Retrieved on July 19, 2010.

Resources

The Lewy Body Society Homepage

Source: The Lewy Body Society
Description: This website provides information about Lewy body dementia, upcoming events related to Lewy body dementia, and relevant news. It also provides links to outside resources, such as other websites and articles about the disease.

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Lewy Body Dementia Online Community

Source: Lewy Body Dementia Association, Inc.
Description: This caregiver-to-caregiver resource offers a place to ask questions about Lewy body dementia, share caregiver tips, and discuss other information about Lewy body dementia. The forum offers sections on symptoms and diagnosis, behavioral issues, medications, and respite care.

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Lewy Body Journal: Our Family's Experience with Lewy Body Disease

Source: LewyBodyJournal.org
Description: This website follows the experience of one family's care for their mother with Lewy body dementia. It includes a journal chronicling their experience, stories from other caregivers, and links for information and resources.

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Lewy Body Dementia Association Homepage

Source: Lewy Body Dementia Association, Inc.
Description: This website provides a large number of resources for individuals wanting to know more about Lewy body dementia and care for those with the disease. The website features information about the disease, resources, information on support groups and events, a newsletter, caregivers stories, discussion forums, a blog, and other online resources.

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Dementia with Lewy Bodies

Source: eMedicine by WebMD
Description: This web page provides a discussion of dementia with Lewy bodies from a medical perspective. It includes information on symptoms, diagnosis, treatment, and medications. The article also describes the relationship between Lewy Body Disease and Parkinson's.

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The Basics: Dementia With Lewy Bodies

Source: National Institute of Neurological Disorders and Stroke (NINDS)
Description: This web page provides a basic discussion of dementia with Lewy bodies - what it is, how it is treated, the prognosis for individuals diagnosed with the disease, and the research being done on the disease. It also provides links to current research and supporting organizations.

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