Why Is LBD So Difficult to Diagnose?

It happens.  Someone who I’ve corrected time and time again tells me that Mom has Alzheimer’s.  They actually don’t really care - except they advertise it to everyone incorrectly.  It’s true.  People connect dementia with AD and nothing else.  Should someone begin to demonstrate signs of mental degradation and begin slipping it’s automatically assumed they have AD (Alzheimer’s Dementia), rather than one of the many (there are 16 at least) forms of the condition:  Alzheimer’s Dementia, Vascular Dementia, Lewy Body Dementia , Frontotemporal Dementia, Creutzfeld-Jakob Disease, Korsakoff’s Syndrome, HIV Cognitive Impairment,Mild Cognitive Impairment (MCI), Corticobasal Degeneration, Huntington’s Disease, Multiple Sclerosis, Niemann-Pick Disease - Type C, Normal Pressure Hydrocephalus, Parkinson’s Disease Dementia, Posterior Cortical Atrophy, and Progressive Supranuclear Palsy.   All these fall under the umbrella of Dementia.  Yup!  It’s not only Alzheimer’s, although it’s the most commonly diagnosed, and the most prevalent.  (Alzheimer’s UK)

Alzheimer’s statistics state that 5.3 million people (2015) in the US who  have been diagnosed, but that’s only 1 in 4 who suffer from it.  Imagine!  And, did you know that North Dakota has the highest rate of Alzheimer’s deaths per year (54 per 100,000) while Nevada has the lowest (11 per 100,000).  (Alzheimer’s Statistics)

Lewy Body Dementia though has approximately 1.3 American’s diagnosed and living with the condition at present.  The majority of dementia diagnoses are incorrect, though, with 30-50% of patients being wrongly diagnosed - even in dementia care centers!  (2010, LBDA fact sheet)

The reason for the misdiagnoses and the failure to diagnose rests with the patient and those around them in the support networks.  Without viable information, observations, and knowledge, physicians, and patients alike cannot form an opinion; however there is also a fear on the patient’s part of what is occurring, and there could be an arrogance and ignorance on the part of the physician to simply write off the symptoms as AD.  This could be deadly as the causes are so different and the medications could have incredibly detrimental effects.

In the beginning, patients may be demonstrating symptoms closer to Parkinson’s or Alzheimer’s.  And, not only does LBD fall on a spectrum with Parkinson’s on one end and Alzheimer’s on the other, but it can mix the dementias and conditions itself.  

This is why physicians use the 1-year rule to determine what form of LBD a patient might have - depending on the  symptoms shown.  Some patients who were originally diagnosed with Parkinson’s may find themselves newly diagnosed with LBD instead - because the dementia is stronger than the PD symptoms.    There are also the neurologists, psychiatrists, and other professionals who need to weigh in.  

If you’re still trying to figure this out, you’re in good company.  Lewy Body Dementia has finally begun to venture into the mainstream, much as Alzheimer’s did in the  1980’s.  

To be informed is to be wise.   So, the next time anyone mentions “Dementia” or “Alzheimer’s”, you may probe for more clues to see if there is more to what they’re saying - perhaps they are believing something that isn’t quite right.

By the way, there is a new test out for testing for LBD - the 3-minute Test, which is offered to help stem the misdiagnoses and to help the patient in the beginning stages.   This test is administered after the regular battery of test by the physicians/neurologists and helps pinpoint the type of LBD diagnosis. 

 For more information about this test, please read Science Daily, October 26, 2015.