The terms Lewy body dementia and Dementia with Lewy bodies are used interchangeably, as are the abbreviations LBD and DLB.
1.†††††† What is Lewy body dementia?
Lewy body dementia (LBD) is a form of dementia, which is a broad term for a disease of memory, thinking and/or social abilities that is severe enough to interfere with everyday activities. LBD is also a form of Parkinsonism, meaning that it causes some or all of the motor symptoms of Parkinsonís disease (tremor, stiffness, slowness, and walking/balance problems). Additionally, LBD causes visual hallucinations (seeing things that arenít there) and unpredictable fluctuations in a personís level of attention or alertness. Many people will also exhibit changes in mood (such as depression) and alterations in behavior or personality (including agitation or aggression). REM sleep behavior disorder (a condition in which people act out their dreams), fainting spells and low blood pressure can also be associated. Symptoms of LBD may seem to arise in the course of several months or may be more gradual in onset. The symptoms do, unfortunately, worsen and people with LBD will require progressively more assistance over time. †
2.†††††† What is the difference between Lewy body dementia and Alzheimerís?
Lewy body dementia (LBD) and Alzheimer's dementia (AD) are both types of dementia, meaning that they cause problems with memory, thinking and/or social abilities that are severe enough to interfere with everyday activities. Both of them affect ďcognitionĒ or thinking capabilities. In general, AD affects memory more significantly (causing forgetfulness) whereas LBD impacts executive function (planning and processing information) and the ability to understand visual information. LBD also causes some or all of the motor symptoms of Parkinsonís (tremor, slowness, stiffness, and walking/balance problems). People with AD may develop these symptoms too but if so, itís typically much later in the disease course. Visual hallucinations (seeing things that arenít there) and fluctuating levels of alertness and attention are more characteristic of LBD than AD. While every individualís course is different, AD usually progresses a bit slower than LBD.
3.†††††† What is the difference between Parkinsonís disease and Lewy body dementia?
Parkinson's disease (PD) is characterized by motor symptoms, including resting tremor, stiffness, slowness, and walking/balance problems. The diagnosis of PD relies on the presence of slowness plus tremor and/or stiffness. Many people with PD will experience cognitive (memory or thinking) problems, which can range from mild ó ďmild cognitive impairmentĒ ó to severe ó ďdementia.Ē However, not everyone with PD will have memory problems; not everyone with memory problems will have dementia; and not everyone with dementia will be classified as having Lewy body dementia (LBD). Even in people with PD, other types of dementia (Alzheimerís dementia, vascular dementia ó that due to multiple strokes, etc.) can occur. Lewy body dementia typically causes some or all of the motor symptoms of PD, memory/thinking problems, visual hallucinations, and fluctuating levels of attention or alertness.
4.†††††† I have Parkinsonís disease. Am I more likely to get Lewy body dementia?
Some studies suggest that having Parkinsonís disease increases your risk of developing Lewy body dementia but having Parkinsonís certainly isnít a guarantee that you will develop the condition.
†5.†††††† Is there a test to diagnose Lewy body dementia?
There is no test that can diagnose Lewy body dementia (LBD). Imaging studies (brain PET, SPECT, DaT scans) are being researched to determine if they might be able to accurately diagnose LBD. At the present time, doctors make the diagnosis based on your medical history and their physical examination. Blood work and standard imaging tests (MRI or CT scans) may be done to exclude other medical conditions. Detailed memory testing is sometimes performed to support a doctorís diagnosis or establish a baseline for comparison to future testing. Movement disorders specialists (the same physicians who treat Parkinsonís) or cognitive specialists (doctors who treat dementia) typically manage LBD.
6.†††††† Are there any treatments for Lewy body dementia?
There is currently no medication that slows or stops the progression of Lewy body dementia (LBD). However, there are many medications that can help with the symptoms.
For memory and thinking problems, medications called acetylcholinesterase inhibitors (e.g., donepezil, galantamine and rivastigmine), which are also used for Alzheimerís dementia, are commonly prescribed. These drugs sometimes help control behavior problems and hallucinations as well.
The motor symptoms that are similar to those of Parkinsonís disease (tremor, slowness and stiffness) can be treated with levodopa. Because people with LBD are usually a little more sensitive to the side effects of this medication, doctors use the lowest dosage possible. †
If visual hallucinations are frightening or disturbing, or if delusions (false beliefs) or paranoia occur, medications called atypical antipsychotics (e.g., quetiapine or clozapine) may be prescribed. These are used cautiously in select cases because they can potentially worsen the symptoms of LBD. Medication might be avoided, at least for a while, if hallucinations arenít severe and a person can be reassured regarding them. A visual examination should also be performed as vision problems (the need for corrective lenses, for example) can trigger or worsen hallucinations.
If REM sleep behavior disorder (a sleep disorder in which a person acts out their dreams) is present, melatonin or clonazepam may be helpful.
7.†††††† Is there anything that can be done to prevent Lewy body dementia?
No therapies or behavioral changes have been identified that can prevent Lewy body dementia (LBD). However, some strategies have been suggested to help stave off memory problems in general, and since these donít have side effects and are good for overall well-being and quality of life, they are worth a try. Recommendations include eating a healthy, balanced diet; exercising regularly; interacting with others socially; and doing activities to stimulate memory and thinking (e.g., reading, completing crossword puzzles, playing a musical instrument, etc.). Decreasing stress and getting enough sleep ó easier said than done! ó are also beneficial for everyone, of course.
8.†††††† Are there genetic risks for Lewy body dementia?
There are no clear genetic factors that increase oneís risk for Lewy body dementia (LBD). It is worth mentioning, though, that several genetic risk factors do exist that increase risk for Parkinsonís disease, and Parkinsonís may increase risk for LBD.
9.†††††† Do all people with Parkinsonís have Lewy bodies? Do Lewy bodies always cause dementia? How do you know if you have Lewy bodies?†
The vast majority of people with Parkinsonís disease (other than a rare subset with a certain genetic mutation) have Lewy bodies ó clusters of abnormally folded proteins, including alpha-synuclein, which are found in the nerve cells in the brain. Not everyone with Parkinsonís disease who has Lewy bodies gets dementia.
There is no way to know if you have Lewy bodies because the only way we can see them at the current time is to study the brain at autopsy (although some imaging tests are being done in research settings). We are also working on ways to measure alpha-synuclein (which could indirectly tell us about Lewy bodies) with brain imaging and other testing.
10.†† What resources are available for people with Lewy body dementia and their caregivers?
The Lewy Body Dementia Association has an abundance of educational materials, caregiver resources and information about ongoing clinical trials. Your doctor can also connect you to local support groups and staff ó social workers and physical and occupational therapists ó who can help you navigate the symptoms and course of LBD.
Register with Fox Trial Finder to find recruiting clinical trials for Lewy body dementia and Parkinson's disease. Already on Fox Trial Finder? Make sure your profile is up to date to be matched with the latest studies in your area.†
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