10 Things You Need to Know about Lewy Body Dementia | Lewy Body Dementia Association LBDA

10 Things You Need to Know about Lewy Body Dementia

Lewy Body Dementia Association Clears up the Confusion
About Robin Williams, His Autopsy and Lewy Body Dementia

ATLANTA (November 25, 2014) 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). LBD is an umbrella term for dementia associated with the presence of Lewy bodies (abnormal deposits of a protein called alpha-synuclein) in the brain.

2. LBD can have three common presentations:  

  • Some individuals will start out with a movement disorder leading to the diagnosis of Parkinson's disease and later develop dementia.  This is diagnosed as Parkinson’s disease dementia.

  • Another group of individuals will start out with a cognitive/memory disorder that may be mistaken for AD, but over time two or more distinctive features become apparent leading to the diagnosis of ‘dementia with Lewy bodies’ (DLB).  

  • Lastly, a small group will first present with neuropsychiatric symptoms, which can include hallucinations, behavioral problems, and difficulty with complex mental activities, also leading to an initial diagnosis of DLB.

Regardless of the initial symptoms, over time all three presentations of LBD will develop very similar cognitive, physical, sleep and behavioral features.

3. The most common symptoms of LBD include: 

  • Impaired thinking, such as loss of executive function (planning, processing information), memory, or the ability to understand visual information

  • Fluctuations in cognition, attention or alertness

  • Problems with movement including tremors, stiffness, slowness and difficulty walking

  • Visual hallucinations (seeing things that are not present)

  • Sleep disorders, such as acting out one’s dreams while asleep

  • Behavioral and mood symptoms, including depression, apathy, anxiety, agitation, delusions or paranoia 

  • Changes in autonomic body functions, such as blood pressure control, temperature regulation, and bladder and bowel function. 

4. The symptoms of LBD are treatable: All medications prescribed for LBD are approved for a course of treatment for symptoms related to other diseases such as Alzheimer’s disease and Parkinson’s disease with dementia and offer symptomatic benefits for cognitive, movement and behavioral problems.

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. A variety of drugs, including anticholinergics and some antiparkinsonian medications, can worsen LBD symptoms. 

6. Traditional antipsychotic medications may be contraindicated for individuals living with LBD: Many traditional antipsychotic medications (for example, haloperidol, thioridazine) are sometimes prescribed for individuals with Alzheimer’s disease and other forms of dementia to control behavioral symptoms. However, LBD affects an individual’s brain differently than other dementias. As a result, these medications can cause a severe worsening of movement and a potentially fatal condition known as neuroleptic malignant syndrome (NMS). NMS causes severe fever, muscle rigidity and breakdown that can lead to kidney failure.

7. Early recognition, diagnosis and treatment of LBD can improve the patients’ quality of life: LBD may affect an individual’s cognitive abilities, motor functions, and/or ability to complete activities of daily living. Treatment should always be monitored by a physician and may include: prescriptive and other therapies, exercise, diet, sleep habits, changes in behavior and daily routines.

8. Individuals and families living with LBD should not have to face this disease alone: LBD affects every aspect of a person – their mood, the way they think, and the way they move. LBD patients and families will need considerable resources and assistance from healthcare professionals and agencies. The combination of cognitive, motor and behavioral symptoms creates a highly challenging set of demands for continuing care. LBDA was formed to help families address many of these challenges.

9. Physician education is urgently needed: An increasing number of general practitioners, neurologists, and other medical professionals are beginning to learn to recognize and differentiate the symptoms of LBD from other diseases. However, more education on the diagnosis and treatment of LBD is essential.

10. More research is urgently needed! Research needs include tools for early diagnosis, such as screening questionnaires, biomarkers, neuroimaging techniques, and more effective therapies. With further research, LBD may ultimately be treated and prevented through early detection and neuroprotective interventions. Currently, there is no specific test to diagnose LBD. Donations can be made at lbda.org/content/ways-to-give.

About Lewy Body Dementia Association

The Lewy Body Dementia Association (LBDA) is a 501(c)(3) nonprofit organization dedicated to raising awareness of Lewy body dementias (LBD), promoting scientific advances, and supporting people with LBD, their families and caregivers.  LBD, a complex disease that can present with a range of physical, cognitive, and behavioral symptoms, is a “family disease.”  It dramatically affects not only the person diagnosed but also the primary caregiver.  A national health organization, LBDA supports all those affected by Lewy body dementias through outreach, education and research.  To learn more about LBD and LBDA, please visit lbda.org.




Media contact:

Lori Ann Dick, APR



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