10 Things You Should Know about LBD

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Lewy body dementias (LBD) affect an estimated 1.4 million individuals and their families in the United States. At the Lewy Body Dementia Association (LBDA), we understand that though many families are affected by this disease, few individuals and medical professionals are aware of the symptoms, diagnostic criteria, or even that LBD exists. There are important facts about Lewy body dementias that you should know if you, a loved one, or a patient you are treating may have LBD.

  1. Lewy body dementias (LBD) are the second most common form of degenerative dementia and is widely under-diagnosed: The only other form of degenerative dementia that is more common than LBD is Alzheimer’s disease (AD). Many individuals who have LBD are misdiagnosed, most commonly with Alzheimer’s disease if they present with a memory disorder or Parkinson’s disease if they present with movement problems.
  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.  Another group of individuals will start out with a memory disorder that may look like 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, leading to an initial diagnosis of DLB. 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: problems with memory and thinking

    Hallucinations: seeing or hearing things that are not really present

    Cognitive fluctuations: unpredictable changes in concentration and attention

    Parkinson-like symptoms: rigidity or stiffness, shuffling gait, tremor, slowness of movement (bradykinesia)

    Severe sensitivity to neuroleptics (medications used to treat hallucinations)

    REM Sleep Behavior Disorder: a sleep disorder where people seemingly act out their dreams

  4. The symptoms of LBD are treatable: Currently there are no medications approved specifically for the treatment of LBD. 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. LBDA has compiled a list of medications that should be avoided.
  6. Traditional antipsychotic medications may be contraindicated for individuals living with LBD: Many traditional antipsychotic medications (for example, Haldol, Mellaril) are commonly 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 your physician(s) 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.