Mailbox Response

The question was submitted 25/11/2007

Subject: Lewy Body and Medication

In an earlier Question about Lewy Body Dementia the answer included the following:

"There is evidence the cholinesterase inhibitors are helpful but in Australia these drugs are not PBS listed for DLB so they have to be obtained on a private script.

From all I have read about different dementias Alzhiemers, Lewy Body Dementia and also Parkinsons Dementia can only be verified after death with a brain autopsy and they are possibly all linked . So given that how can one be denied the medication on PBS if the doctors are not 100% sure of the diagnosis? I know that a MMSE must be performed so if a score of 10 or above is given shouldn't the drug be prescribed on PBS?
My father has started on Aricept two weeks ago and has shown a remarkable improvement in his cognitive abilities in this short time, we are paying full price for this medication.

Answer from DementiaNet

It depends on the diagnosis made by the doctor.
The PBS guidelines are about cost. The government has decided to pay for these drugs for Alzheimer's but not Lewy Body or Parkinson's disease dementia.
You are correct in saying that these dementias can only be definitely diagnosed after death by autopsy. We use the tems probable and possible for our diagnoses in the clinic. This is what was used in the drug trials that are the basis of the Governments descision
Some dementias can co-exist "Mixed" making diagnosis trickier.
Write to the new Federal Minister ASAP

The answer was published on DementiaNet 28/11/2007