1. Michelle-A

    Michelle-A Registered User

    Feb 5, 2005
    27
    Essex
    #1 Michelle-A, Mar 30, 2005
    Last edited: Mar 30, 2005
    Hello everyone,
    For years we’ve been told mum has Alzheimer’s, which I think is the general term used for dementia. Now that mum’s in hospital we’ve only just been told by a professor of neurology that the form of dementia mum has is lewy body dementia – apparently second most common form of dementia after alzheimers. Looking it up on the internet it describes my mum down to a tee. We were also always told she has Parkinsons too, now it seems Lewybody is associated with parkinsons symptoms - which is different! I'm just a bit confused and worried. Does this mean that the medication my mum has been on for AD and parkinsons has done little to benefit her all these years? She was on Aricept from day one, which was supposed to have slowed down the progression of the disease, however, mum is in the advanced stages of dementia after only a few years and now seriously ill in hospital. I do wonder if these drugs have done more harm than good if the diagnosis hasn't been completely accurate??? Lewy body is not too different from AD, but am still a bit confused.
    Does anyone know much about this?
     
  2. Sandy

    Sandy Registered User

    Mar 23, 2005
    6,847
    Hi Michelle,

    I can't claim to have any special experience with dementia with Lewy bodies (DLB), but as my father-in-law was only formally diagnosed with dementia two months ago, I have been reading everything I can lay my (mostly virtual) hands on.

    Since you've been looking into this on the internet, you've probably read the Alzheimer's Society's information sheet already:

    http://www.alzheimers.org.uk/Facts_about_dementia/What_is_dementia/info_lewy.htm

    It does say (under Treatment):

    Recent research suggests that the cholinesterase inhibitor drugs used to treat Alzheimer’s disease may also be useful in treating DLB, although they are not yet licensed for this use.


    So it doesn't sound like the Aricept would have been harmful.

    There is also a good page on the Alzheimer Scotland web site:

    http://www.alzscot.org/info/lewybody.html

    This site says:

    Donepezil and rivastigmine studies have shown that AChE inhibitors may be a safe and effective alternative to neuroleptic/anti-psychotic treatment.


    I have no idea about how Aricept could have influenced the progress of your mum's dementia. One or two sites implied that DLB did progress at a different pace than Alzheimer's.

    Perhaps the most important aspect of your mum's revised diagnosis is the fact that certain neuroplectic drugs can have very dangerous side-effects in persons with DLB. It seems to be a delicate balancing act between drugs for the symptoms of dementia and the Parkinson's symptoms.

    It must be frustrating to get this revised diagnosis after such a long time. Did they just now make this diagnosis or has it been in your mum's notes but not passed on to her family?

    Take care,

    Sandy
     
  3. Michelle-A

    Michelle-A Registered User

    Feb 5, 2005
    27
    Essex
    #3 Michelle-A, Mar 31, 2005
    Last edited: Mar 31, 2005
    Hi Sandy, thanks for your reply. I haven't actually had a look on any of those pages you mentioned so will definitely check them out.

    I didn't realise that Lewy Body dementia progresses more rapidly that AD, that's quite interesting to know.

    We've only just been told about mum having Lewy Body by a completely new specialist she's just seen and he gave her the diagnosis and we were a bit bemused by the whole thing! The other doctors and specialists mum use to be under always told us it was alzheimer's, though they could never be 100% sure because there is no test to say it is definitely alzheimer's, diagnosis is through observation, brain scans etc. Then the whole parkinson's thing came about which kind of baffled me, but now reading about Lewy Body, it all makes much more sense.

    Thanks for your help.

    Michelle x
     
  4. linda.h

    linda.h Registered User

    Jan 24, 2005
    8
    dukinfield
    lewey body

    HI Michelle my husband was diagnosed with lewey body dementia three and a half years ago and was put on aricept. As his illness progressed he also started having parkinsons symptoms. He is still on aricept and Diazepam to help with his tremours and to take the edge of his somtimes aggresive behavior. I was also told LBD progressed faster than alzheimers He also has difficulty with his language skills. It is a dreadfull illness as is any dementia and very dificult to manage. I feel that we who are caring for our loved ones are not given nearly enough information. I have aquired most of what i know from the web and learning from experience.Sorry your mum is so ill now, take care. linda.h
     

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