Case Management, Elder Care Management, Life Care Plan, Medical Consultation

Learning About Lewy Body Dementia

 September 21, 2016

By  Deborah L Weiner Katz, OTR/L, CCM, CLCP

High profile tragedies have historically done more to raise public health awareness than any efforts made by the medical community. It took the death of actor Rock Hudson to alert Americans to the scourge of AIDS. The tragic paralysis of Christopher Reeve in 1995 ultimately led to invaluable research related to the rehabilitation of individuals with spinal cord injury. In 2015, the familiar pattern continued after beloved comedian Robin Williams took his own life. Early assumptions were made regarding his past struggles with alcoholism and depression; however, it was soon revealed that Williams may have suffered from a form of dementia known as Lewy Body Dementia. Lewy Body Dementia is closely related to Parkinson’s disease dementia and so both are commonly referred to as LBD. Due to their similarities, one can be mistaken for the other and that is what may have happened when Williams was diagnosed with Parkinson’s in 2013. Examination of his brain tissue instead revealed the presence of Lewy Bodies. It is possible that vivid visual hallucinations brought on by Lewy Body Dementia may have contributed to his distressed mental state. An estimated 1.4 million Americans suffer from LBD but Williams’ death has put the disease in the headlines.

Symptoms Of Lewy Body Dementia

Dementia is already quite a familiar and formidable presence in elder care management, commonly associated with Alzheimer’s disease and memory loss. Its symptoms are well known. Our aim is to delve into the symptoms of Lewy Body Dementia in order to spread further awareness of this devastating disorder. Progressive dementia of any kind is characterized by deficits in attention and executive function. Memory impairment does not necessarily appear at first. From here, features of Lewy Body Dementia are divided into three categories: core features, suggestive features and supportive features. This overall list is drawn upon in order to identify whether or not an individual has probable or possible Lewy body dementia. [1]

Core features:

  • Fluctuating attention and concentration
  • Recurrent well-formed visual hallucinations
  • Spontaneous parkinsonian motor signs

Suggestive features:

  • Rapid eye movement (REM) sleep behavior disorder
  • Severe neuroleptic sensitivity
  • Low dopamine transporter uptake in basal ganglia demonstrated by SPECT or PET imaging

Supportive features:

  • Repeated falls and syncope (fainting)
  • Transient, unexplained loss of consciousness
  • Autonomic dysfunction
  • Hallucinations of other senses, like touch or hearing
  • Visuospatial abnormalities
  • Other psychiatric disturbances

Essentially, the difference between probable and possible Lewy Body Dementia is this:

Probable Lewy Body Dementia can be diagnosed if two core features are observed along with progressive dementia OR if one core feature is observed along with one suggestive feature.

Possible Lewy Body Dementia can be diagnosed with the presence of only one core feature or one suggestive feature.

Things To Know About Lewy Body Dementia

As stated earlier, the most common form of degenerative dementia is still Alzheimer’s disease. LBD is right behind it but LBD is a collective term for any dementia associated with Lewy bodies. Are you curious what those are yet? Lewy bodies are abnormal deposits of protein found on the brain. Scientist Friederich H. Lewy was researching Parkinson’s disease in the early 1900s when he found such deposits disrupting the normal functioning of the brain. This may be your first exposure to the work of Dr. Lewy. Even the news coverage resulting from Robin Williams’ untimely end may not have provided much information. That is why we have compiled a short list of things to know about LBD.

LBD shows up in a variety of ways. Here are three:

  • LBD may begin with a movement disorder which in turn tends to be diagnosed as Parkinson’s disease. The dementia that develops following that is known as Parkinson’s disease dementia.
  • LBD may begin with a cognitive/memory disorder that gets mistaken for Alzheimer’s disease. After a time, features are matched appropriately to those on the above list and the diagnosis is ‘dementia with Lewy bodies’ or DLB.
  • LBD may begin with neuropsychiatric symptoms like the ones that appear on the ‘Supportive features’ list above. If an individual is exhibiting behavioral problems, experiencing hallucinations or struggling with complex mental activities, an initial diagnosis of DLB is likely.

LBD must be recognized, diagnosed and treated as early as possible.

Despite whatever similarities you may have picked up on between LBD and Alzheimer’s or Parkinson’s, they must be treated separately when it comes to medication. What works for one may not work for another. Certain medications that treat Parkinson’s actually worsen LBD symptoms.

Just like the other forms of dementia, LBD will eventually hinder most aspects of daily life. The sooner treatment begins, the better chance you will have to get the jump on it. Under the supervision of a physician, an individual diagnosed with LBD may undergo changes in exercise, diet, sleep habit, behavior and other daily routines.

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

The primary and most destructive effect that stigma can have is isolation. Mental health awareness in this country still has a very long way to go. While it is preoccupied with undoing the effects of stigma on the nation’s youth, countless individuals and families are struggling with dementia because of either a lack of education or a lack of support. A loved one’s transformations in mood, thought and movement can seem like they are becoming another person, someone unfamiliar. While at some level, we know this is not the case and still love them with all our hearts, the experience can still be quite distressing. The demands for continuing care are daunting. That is why care management practices like this one exist.  We can help to lessen the burden.

Education and research are sorely needed.

Physicians are not entirely caught up on LBD. It is still the most misdiagnosed dementia. Its symptoms are still easily mistaken for those of other diseases such as Parkinson’s. From general practitioners to neurologists and other medical professionals, further education on the diagnosis and treatment of LBD is vital

No specific test exists to diagnose LBD. More data is needed. Data is gathered by research tools such as screening questionnaires, biomarkers and neuroimaging techniques. Early detection is prevented only by lack of funding for research.

[1] https://www.lbda.org/content/dlb-and-pdd-diagnostic-criteria

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