New NIH Booklet on Lewy Body Dementia

Someone at the Alzheimer’s Disease Education & Referral Center at the NIA (National Institute on Aging – part of NIH) sent me a couple of copies of this new NIA booklet on Lewy Body Dementia, published in September 2013.  I will bring the two copies I have to the next caregiver support group meeting, and lend them out.

You can order a print copy yourself here:  (free of charge)

Alternatively, you can print your own copy from this PDF or read it online here:

I think the booklet’s review of symptoms and how to manage/treat these symptoms is good.

Three points made in the booklet were wrong, as far as I’m concerned:

1.  “LBD can occur alone or along with Alzheimer’s or Parkinson’s disease.”

Robin’s comment:  Yes, LBD frequently co-occurs with Alzheimer’s Disease.  But it never co-occurs with Parkinson’s Disease.  You can make a good argument that Parkinson’s Disease Dementia — one type of LBD — *is* Parkinson’s Disease.  And many neurologists make the argument that Dementia with Lewy Bodies — another type of LBD — *is* Parkinson’s Disease.  I have never heard *any* LBD expert say that LBD co-occurs with Parkinson’s.

2.  “It’s important to know which type of LBD a person has, both to tailor treatment to particular symptoms and to understand how the disease will likely progress.”

Robin’s comment:  There are two types of LBD — DLB and PDD.  Treatment is tailored to symptoms present, not which type of LBD a person has.  Also, I’m not sure how knowing the type of LBD will help one understand how the disease will progress.  Survival time is shorter in DLB than PDD but the progression is quite individual.

3.  “(LBD) represents an important link between (Alzheimer’s and Parkinson’s).”

Robin’s comment:  The link between LBD and Alzheimer’s is unclear to me.  Yes, LBD frequently co-occurs with AD but the two disorders have little in common.

There were a few other items that could’ve used further clarification:

4.  “Many LBD experts prefer quetiapine or clozapine to control different behavioral symptoms.”

Robin’s comment:  This is certainly true.  But, in some with LBD, even these preferred medications can cause neuroleptic malignant syndrome.

5.  “Urinary incontinence should be treated cautiously…”

Robin’s comment:  This is certainly true.  I wish more had been said about treatment of this symptom as it’s a very common symptom.

6.  Like nearly all other publications I’ve seen for lay people, this booklet conflates DLB and PDD.  They actually have different diagnostic criteria but you wouldn’t know it from this publication.

If you find worthwhile items in the booklet, please let me know!