1. Expert Q&A: Benefits - Weds 23 October, 3-4pm

    Our next expert Q&A will be on the topic of benefits. It will be hosted by Lauren from our Knowledge Services team. She'll be answering your questions on Wednesday 23 October between 3-4pm.

    You can either post your question >here< or email them to us at talkingpoint@alzheimers.org.uk and we'll be happy to ask them on your behalf.

  1. susie

    susie Registered User

    Nov 30, 2003
    82
    shropshire
    I haven't posted for a while as I was thinking things were going well as you begin to accept the changes AD brings as the norm after a while. David's behaviour was becoming more rigid and uninhibited and his ideas so fixed that there was a lot of friction that I was trying to sidestep. The CPN called today and dropped a bombshell that all these indications were that David has Some Ad but predominantly frontal lobe Picks Disease! To be honest,when we first began to woryy about his behaviour5-6 years ago,my daughter and I both picked up the Pick's Disease symptoms on the internet as an exact account of the changes happening to David. He is not loosing speech as in AD but stopping him talking sometimes as his sentences are so long and rambling. I know of the support groups on the internet but this forum has been invaluable in helping me to accept AD, so does anyone have experience of combinations of different dementias?I'd welcome your advice and support.
     
  2. Brucie

    Brucie Registered User

    Jan 31, 2004
    12,413
    near London
    Seems to me that many people talk of patients having this and that dementia. My wife seems to have Alzheimer's and vascular.

    Combinations of symptoms make it difficult to be sure and the medics want to hedge their bets. Often at first they seem to suggest Alzheimer's as that is the one most people will have heard of. Later, if you question their judgment then they may expand the diagnosis to include other dementias.

    For us, the main difference in dementias is the way in which they develop. Some have a long slow decline, others have sharp steps.

    It is very confusing.

    From my point of view it is also quite academic. I have lost Jan, she has lost me because she no longer recognises me, and that's about it. Once the person is in a good care home, it is only their day to day care that matters. Before that time, when they are at home, knowledge of the precise dementia would be very helpful to enable one to cope with the deteriorating circumstances. I never had that and I was often more confused than Jan.

    My best wishes to you all.
     
  3. nicki333

    nicki333 Registered User

    Oct 8, 2005
    4
    West Mids
    Hi

    Hi, my dad was diagnosed 2 years ago with Fronto Temperal Lobe Dementia so i understand exactly what you are saying. He is 59 and i am 29. I find his behaviour difficult to deal with as there isn't much advice out there. My dad's doctor says there are only 2 people with this illness in the whole of Staffordshire!
    I would welcome any advice you have for me.
    Regards, Nicki.
     
  4. susie

    susie Registered User

    Nov 30, 2003
    82
    shropshire
    Hello Nikki
    I had quite a shock when I saw this thread when I logged on tonight. I posted it a lomg long while ago. The Pick's disease is becoming more obvious and my husband is now on anti-psychotic drugs. I'll try to help if I can, so if you want to send a private message with any questionsetc, please do.
    Susie
     
  5. Sandy

    Sandy Registered User

    Mar 23, 2005
    6,847
    Hi Nicki,

    I wonder if your dad's doctor has got hold of the right numbers? According to the Alzheimer's Society web site, Fronto-temporal dementia including Pick's disease is responsible for approx 5% of the total cases of dementia. As the total number of cases of dementia in the UK is over 750,000 - that means that over 37,000 people in the UK have fronto-temporal dementia including Pick's disease.

    The Alzheimer's Society has a fact sheet on fronto-temporal dementia including Pick's disease:

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

    You might also look at the web site of the Pick's Disease Support Group:

    http://www.pdsg.org.uk/index.php

    There is also a North American group that might have some useful information of their web site:

    http://www.ftd-picks.org/

    Take care,

    Sandy
     

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