Lewy body dementia: 10 things people need to know

The recent news that the brain of actor/comedian Robin Williams showed signs of diffuse Lewy body disease has created more interest and coverage in this widely under-diagnosed condition than ever before.

However, it can be difficult for the lay person to understand this complicated disease, and the Lewy Body Dementia Association offers the following to clarify the confusion.

1. Lewy body dementias (LBD) are the second most common form of degenerative dementia. The only other form of degenerative dementia that is more common than LBD is Alzheimer's disease (AD).

2. LBD can have three common presentations:

  • Starting out with a movement disorder leading to the diagnosis of Parkinson's disease and later develop dementia.
  • Starting out with a memory disorder that may look like AD.
  • Presenting with neuropsychiatric symptoms, which can include hallucinations, behavioral problems, and difficulty with complex mental activities.

Regardless of the initial symptom, over time all three presentations of LBD will develop very similar cognitive, physical, sleep and behavioral features, all caused by the presence of Lewy bodies throughout the brain.

3. The most common symptoms of LBD include:

  • Dementia
  • Hallucinations
  • Cognitive fluctuations
  • Parkinson-like symptoms
  • Severe sensitivity to neuroleptics
  • REM Sleep Behavior Disorder

4. The symptoms of LBD are treatable.

5. Early and accurate diagnosis of LBD is essential: Early and accurate diagnosis is important because LBD patients may react to certain medications differently than AD or PD patients.

6. Traditional antipsychotic medications may be contraindicated for individuals living with LBD.

7. Early recognition, diagnosis and treatment of LBD can improve the patients' quality of life.

8. Individuals and families living with LBD should not have to face this disease alone.

9. Physician education is urgently needed.

10. More research is urgently needed! Research needs include tools for early diagnosis, such as screening questionnaires, biomarkers, neuroimaging techniques, and more effective therapies.

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