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How long does diagnosis for bvFTD take?!?! We're getting desperate..

Discussion in 'Memory concerns and seeking a diagnosis' started by JayVeee, Feb 1, 2016.

  1. JayVeee

    JayVeee Registered User

    Feb 1, 2016
    My father-in-laws health has declined rapidly in the last year. The Dr suggested bvFTd but its taking months to get a diagnosis.
    Until we get a diagnosis we can't seem to get any help.
    The Dr put him in touch with the Social Services but after a couple of phone calls to him (no visits?!?!) they say they can't go back to see him as he has told the them he is fine....
    He is not fine. And he lied to them on the phone....
    In the past few months he has been 'befriended' by people who basically take his money on far fetched sob stories. This is happening over and over again.
    We need a diagnosis of some sort so we can step in and take control.
    We attempted to get a LPA last year but one of his 'new friends' persuaded him to sign a form saying he no longer wanted it.
    He seems to believe strangers and not members of his close family.
    He will need every penny he has for his future care but we can't get through to him.
    I'm so incredibly stressed about the situation. All I seem to get from the health services is a 'well as he currently has mental capacity he can give his money to who he wants'
    He's had a scan but after 8 weeks we're still waiting for just a meeting with the consultant....
    I sent a 25 different examples of how his behaviour has changed to the GP last week and insisted it was passed on to the consultant - I'm just stunned at the lack of information that gets shared. I don't think the GP told the Social Services half of what has gone on.
    Any advice would be hugely hugely appreciated.....
  2. marionq

    marionq Registered User

    Apr 24, 2013
    This is a horrible situation and quite frightening at times as you don't know what these people will do next. Three years ago we were in a similar situation with a distant relative scamming my husband constantly and I found out just in time trying to get him to act as guarantor for a bank account.

    Does your husband have Power of Attorney now for finance and health and welfare? If not that is something to attend to straight away. Download the forms, fill them in and try to get him to sign them. You have to distance him from these people and the simplest way is to look at how to limit his access to funds to give them.

    Saying that I found that once the thousands were reduced to hundreds, to twenties etc this scumbag of my husbands would take the last fiver from him. If you have proof of wrongdoing then you can involve the police who will regard it as abuse of the elderly.

    A word of comfort. Once I got the access to funds sorted the problem took care of itself and it is over a year since we last heard of our particular piece of garbage.
  3. JayVeee

    JayVeee Registered User

    Feb 1, 2016
    We've tried to involve the police but when they visit him he denies he is still in contact (not true) and he also says he gave it to them so in the eyes of the law it's not a crime. When my husband is with him and talks through the details he says "yes I was conned"
    We tried to get a statement with my husband being there but the police went round without him being there and got the "no no everything is fine' answer.
    We couldn't get the Power of Attorney because of the influence of the fraudster!
    We can't get a Court Protection Order as we're still waiting for a diagnosis.
    I don't know what to do :confused::confused::confused:
    In the 8 weeks we've been waiting he has found a new 'friend' and in the space of a few days after meeting he has signed up to buy them a car! He won't be able to make the payments on it....
    All the cards are stacked in the fraudsters favour. There are so many out there it really is frightening.
  4. Countryboy

    Countryboy Registered User

    Mar 17, 2005
    I expect after a carrying out the usual test of they may send you for the following but thse Scans are very expensive

    PET (positron emission tomography): This imaging technique provides a view of the brain's metabolic status. Reduced metabolism has been found in the frontal and temporal lobes after some cases of MTBI.

    PET scan data is also consistent with results from neuropsychological evaluations. It has also been found that minor TBI without loss of consciousness can result in significant, functional brain damage.

    SPECT (single-photon emission computerized tomography): This tool detects areas of decreased cerebral blood flow, which assists in diagnosing persistent post-concussion syndrome beyond three months post-injury. SPECT is less expensive, less complex, and more available than a PET scan. SPECT neuroimaging provides evidence of the type of damage that often leads to post-traumatic headaches.
  5. JayVeee

    JayVeee Registered User

    Feb 1, 2016

    Thanks Tony!
    Are these tests fairly standard for Frontal lobe dementias? So far he's only had a CT scan. I thought it was supposed to be an MRI .... I just feel like all agencies involved seem to be doing the absolute minimum and just treat it like a box ticking exercise. Based on the cost of the above tests I'm pretty sure they won't do it unless I insist. Should I be proactive and insist on these tests? Anyone else have a view?
  6. Countryboy

    Countryboy Registered User

    Mar 17, 2005
    #6 Countryboy, Feb 1, 2016
    Last edited: Feb 1, 2016
    Hi JayVeee obviously everyone with dementia is different ( I can only tell what happened with me ) I was diagnosed with Alzheimer’s disease in November 1999 and given Aricept. It wasn’t until 2003 & 2004 when I went for a PET and SPECT scans

    PET Scan (Positron Emission Tomography) provides a picture of the brain s activity, rather than its structure,
    SPECT (Single Photon Emission Computed Tomography): A type of nuclear medicine scanning that is very similar to PET. SPECT measures blood flow and activity levels in the brain, which make it a diagnostic tool for identifying behavioral and cognitive problems in persons with neurodegenerative conditions such as FTD.

    by the way I was aged 57 when first dignose and 60 for PET & SPECT scans also still in full employment until my retirement at 65 hope it helps
  7. Hellyg

    Hellyg Registered User

    Nov 18, 2014
    Hello, I am so sorry to hear about your father in law, it can take a while to get a formal diagnosis.

    My husband was diagnosed with FTD, Semantic variant, and it did take months to get to that point. I think it was probably more obvious that something was wrong with my husband with it being FTD Semantic variant, as he could not understand what he was being told/asked. The first diagnosis was Alzheimer's based on a SPECT scan which was then changed 10 months later to FTD.

    To get the Alzheimer's diagnosis it took 8 months including the GP trying antidepressants, a CT scan and then the SPECT scan. It took a further 7 months for it to be amended to FTD.

    I think it is harder to diagnose the behavioural variant, but please do not despair, you are going through the right steps. It is just tough on you.

    I am not sure if you have been on any FTD specific forums, but I find http://www.ftdsupportforum.com/forum.php, useful and it has many people under going the diagnosis process for their loved one, which can be different and requires different tests to Alzheimer's.
  8. JayVeee

    JayVeee Registered User

    Feb 1, 2016
    Cheers Hellyg - its a long slog isn't it.... Its great to have both yours and Tony's heads up re the SPECT scan.
    I have read that the behavioural variant is harder to to diagnose - I think thats why I went on a mission to talk to friends and family and put all our concerns into a 25 point document!
    It's difficult to judge his behaviour on a day to day basis as he lives alone after my mother in law passed away. He seems to have been on a path of alienating people for quite some time and is oblivious to his behaviour. Empathy and reason have gone out the window.
    I think we all assumed a lot of his issues were down to depression but as you dig deeper and talk to others around him you realise the problem is much more complex. Totally understand why its a difficult diagnosis.....
    This site is a great help in finding our way and figuring out what questions to ask!
  9. aprilbday

    aprilbday Registered User

    Jan 27, 2016
    Washington, DC USA
    You are an inspiration!!!!
    Thank you for sharing this. I love that you full time worked through these challenges! Wow!
    May I please ask what your PET scan showed?

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