What is a Lewy Warrior?


What is a Lewy Warrior?

One in seven Americans over the age of 70 has dementia. It’s estimated that 5.3 million Americans are serving the role as caregivers for that ever-growing segment of our society. While Alzheimer’s is the most common form of dementia, the second common form is an illness very few had heard of until the late Robin Williams’ diagnosis was made known: Lewy Body Disorder (LBD).

According to Dr. Galvin of the Lewy Body Dementia Association, “Lewy body dementia seems to progress more rapidly than Alzheimer’s; most patients don’t live as long with it.”

It’s been said that LBD is like Alzheimer’s, Parkinson’s, and Schizophrenia all mashed together. Many doctors feel the actual number of people suffering from Lewy Body Disorder is higher than the statistics show due to misdiagnosis. In other words, many people diagnosed with Alzheimer’s actually have LBD. According to the Journal for Parkinson’s and Related Disorders, 36% of people with LBD were originally misdiagnosed as Alzheimer’s. There’s no way to know how many people are still misdiagnosed.

According to the Alzheimer’s Society, “DLB accounts for around 4 per cent of all recorded dementia, but there is good evidence that the condition is under-diagnosed. Based on studies of brain tissue after death, scientists think DLB may represent as much as 10 per cent of all dementia.”

Dementia of any kind carries a particularly heavy burden on caregivers.
Not only are there physical issues that need to be addressed, but there are mental ones that compound the difficulties. Many times the caregivers are left fighting these illnesses like warriors sent, ill prepared into battle.

This blog has been established as a place where caregivers can find and offer advice to other caregivers. While many of the posts will focus on Lewy Body Disorder, the tips and experiences of the caregivers contributing will be helpful for anyone serving the role of caregiver for a loved one.

This advice is not from doctors or psychologists who’ve read books about dementia or even treat patients who have these diseases. The help on this blog is from the people in the trenches, scrambling each day to provide care and survive the challenges that assault them from sunup to sundown. The people who give everything they have until they collapse into bed every night, only to be awakened a few hours later because their loved one needs them. These are the people who get up each morning, knowing the day before them will challenge them once more and they face these challenges even on the days they’d rather run the other way.
This blog is from the warriors themselves…

3 responses »

  1. I think some people diagnosed at first with AD MAY have LBD, but I think it is a bit strong to say ” a large percentage actually have” LBD. LBD was only identified as a distinct disease 19 years ago. I believe there has been improvement in more accurately diagnosing it. Also it is very important for caregivers not to settle for a diagnosis of “dementia” . There are a number of conditions that present with an element of dementia, but the treatment is not all the same. Although there are no cures, the proper medication can treat the symptoms and improve quality of life, at least for a while. The wrong medications can be very harmful. A full set of neurological tests can help to pinpoint the disease, but at this point only an autopsy can confirm a Lewy Body diagnosis.


  2. Thanks for you comments. I’ve amended the post to reflect your concern. I obtained my information from reading several sites including lbda.com and others addressing the misdiagnosis issue with LBD. It’s a tricky illness to pinpoint. The point of my statement was to stress the fact LBD is more prevalent than people realize. I hope I’ve rephrased it to make that point more clear.
    Thanks again!


  3. My LO has not been diagnosed with LBD but was diagnosed with both early onset Alzheimers and Parkinsons simultaneously. How likely is it that this diagnosis is not LBD? His neurologist keeps asking if he is having hallucinations when I bring up this possibility.


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