What is the advantage of getting a diagnosis?

Discussion in 'Recently diagnosed and early stages of dementia' started by MrsFish, May 20, 2015.

  1. MrsFish

    MrsFish Registered User

    May 20, 2015
    6
    For the third time since last August my husband has been given a deadline to decide whether or not to go ahead with the next stage of diagnosis. After an hour of the sort of 11 plus verbal reasoning questions he would have found too hard thirty years ago, in front of an audience (doc, me, doc's student) he asked to stop. I think he was tired as well as fed up. The doctor gave him a fortnight "to make up his mind" whether to continue. As the expected diagnosis is Vascular Dementia and his heart condition would probably rule out any drug treatment - we really don't know what he would be turning down. Financial benefits? Driving ban? When I asked, the doctor suggested "post diagnosis support" - too late really, as we probably need "during diagnosis support"! - and "relationship counselling" which we have managed without quite well for 30 years. From your experience, what are the pro's and con's of going through this?
     
  2. Countryboy

    Countryboy Registered User

    Mar 17, 2005
    1,416
    Male
    Cornwall
    #2 Countryboy, May 20, 2015
    Last edited: May 20, 2015
    MrsFish well after you get your confirmed diagnosed what then we'll you maybe put on some medication that's a plus, if you want to claim befits I suppose that maybe a plus as well ( I was diagnosed in 1999 and decided to continue at work until my retirement aged 65 ) but my choice , now the down side or disadvantages after the diagnoses you will without a doubt to inform DVLA and all you freedoms will be suspect , I tell people my diagnose ruined all I worked and looked forwarded to in my retirement mainly Shooting with my diagnoses of dementia the Police Gun Licensing says I'm a danger to the public and pease " yet in 72 years I have never broken any law not even a speeding or parking ticket yet I'm treated the same as any hardened criminal or possibly worse because I know people who have spent time in prison and been granted a gun licence ok this may not be the type of information you were expecting but it what you can expect after diagnoses crazy old UK

    Ps I have applied to have a gun licence three times in past nine years actually waiting now for fourth time not sure what that's have cost the Police Authority to carry out the checks but I will keep reapplying as long as I'm alive or until I get the licence .

    Tony
     
  3. Beate

    Beate Registered User

    May 21, 2014
    11,703
    Female
    London
  4. MrsFish

    MrsFish Registered User

    May 20, 2015
    6
    Interesting that you both mention access to medication. The doctor appeared to be saying categorically that there would not be any suitable medication.

    At the moment, we don't actually want anyone to do anything to help. It seems to me that if we wait for a diagnosis until we actually do want something - then his thinking would probably have deteriorated and diagnosis would be a whole lot quicker and less painful? But the doctor seemed to suggest that if we get off the train now, it may be hard to get back on again: as it were.
     
  5. Countryboy

    Countryboy Registered User

    Mar 17, 2005
    1,416
    Male
    Cornwall
    Hi MrsFish obviously with dementia there are many types and people who get a diagnoses are different age some possible will have dementia for 20 years before they get diagnosed others may be diagnosed at its infancy , I myself was 57 I'm now 72 I was put on a trail drug in November 1999 called Aricept , I still on that same drug today , did the drug help well I like to say yes but I don't really know, what I do know personally I'm not different I haven't declined in the slightest , I fail badly on the memory word type tests but then make sure the Consultant knows what my ability is on things I am good at like drawing and submitting Planning applications and building regs and never having them rejected , it not all about memory tests , I can forget something in a flash but could remember pages and pages of ritual I learnt 40 years ago word perfect , however my dement did cause me a lot of grief when being told I could only have a driving licence for a 12 month period it took me into a 12 year battle with DVLA finally gathering enough deviance to challenge DVLA in Court and I won and got my Full Driving Licence reinstated so it's depends if you just want to give up or fight for your rights obviously I'm the fighter , I also realise I maybe one of the more lucky ones but I do have the diagnoses and it was after many hours of testing MRI, PET brains scans over a four year period , and I continued working in full employment again my choice MrsFish obviously this is all about me and how I work with my dementia, I can not or would not suggest everyone is the same

    Cheers Tony
     
  6. Moonflower

    Moonflower Registered User

    Mar 28, 2012
    775
    MrsFish, you may not need any help now but probably will do in the future. Accessing assistance can be a horribly slow process. If you wait until you need help before starting the ball rolling then you could end up really struggling

    Perhaps better to get the diagnosis started and find out what you are entitled to, even if you don't access it yet
     
  7. MrsFish

    MrsFish Registered User

    May 20, 2015
    6
    #7 MrsFish, May 20, 2015
    Last edited: May 20, 2015
    Thanks Tony - "all about you" is fine, it is the only way I'm going to figure this out, by hearing people's personal experience.
     
  8. Lindy50

    Lindy50 Registered User

    Dec 11, 2013
    5,302
    Cotswolds
    #8 Lindy50, May 20, 2015
    Last edited: May 20, 2015
    Mrs Fish, I do sympathise. Your poor husband seems to have been put through the wringer, and the doc could perhaps have explained things a bit better!

    I struggled with my mother and this issue, though for different reasons. As she is in her 90's I did wonder what benefit a diagnosis could offer. However, we did go ahead, and a couple of years down the line, I can tell you I'm pleased we did. What the diagnosis gave me above all, was the confidence to know what we were dealing with...planning care and support became easier. Also as far as support services are concerned, having a diagnosis helps them know whether their services will be suitable.

    Having a diagnosis also meant that I knew I had to register my power of attorney for mum. It meant I could claim council tax exemption for her ( known as SMI exemption - you fill in a council form and then ask the GP to confirm the diagnosis).

    I wasn't sure about it all at first, found it all very upsetting and worrying. But basically I really think that knowing what we are dealing with, has been helpful to both mum and I (and the rest of the family).

    Of course, everyone is different, and timing is important. As Tony has said, there are many things a diagnosis doesn't change, thankfully. You will still be the same people, and can still live well....many posters on here can testify to that. So I wish you and your husband well, I hope you get information ( and treatment if appropriate) when you need it.

    Good luck :)

    Lindy xx
     
  9. MrsFish

    MrsFish Registered User

    May 20, 2015
    6
    I take your point, Moonflower. But I was hoping to get a better understanding ahead of time of what we might need/be entitled to.

    From the beginning, I was the one encouraging him to go if only because if it does affect his driving there seems to be a moral duty to protect other people on the road and his passengers. (Me amongst them). But the - yes, you're right - horribly slow process doesn't seem to set any priority on dealing with that risk. And I can't actually see a problem with his driving myself yet.
     
  10. MrsFish

    MrsFish Registered User

    May 20, 2015
    6
    Thank you Linda - some very helpful points there. Particularly as I am also my mother's carer.

    We've already sorted Power of Attorney and there would be no question of activating it yet - and we know we have to have those conversations for the future about "where I left the deeds" and "where to find the stopcock" although of course, like everyone else, we've probably not covered it all properly.
     
  11. Lindy50

    Lindy50 Registered User

    Dec 11, 2013
    5,302
    Cotswolds
    Hi again :)

    No way of knowing timescale, of course, but probably just as well to get to know financial and household details, as you say. Lots of people seem to put bills etc into joint names to avoid unexpected problems. You sound pretty well organised to me! :cool: x
     
  12. Countryboy

    Countryboy Registered User

    Mar 17, 2005
    1,416
    Male
    Cornwall
    Hi MrsFish yes I agreed but we must be careful to remembers it's the Person with the diagnoses of dementia that has to suffer a wrong decision , as I said I'm strong willed enough to fight my corner and wouldn't give Up anything to please someone else it will be my decision mine alone , hope that doesn't sound to blunt but hey remember I to have dementia at not much political correctness when you have dementia ,

    Please tell you husband to think long and hard because once you have the confirmed diagnoses on your medical files please believe me you won't get to removed I tried and tried in vain G,P & Consultant said unfortunately it stays , ( more than their Jobs worth to removed it ) thing is in 1999 it didn't seem to be a big issue with DVLA , or gun licensing authority they renewed my gun licence twice total six years knowing I had dementia then all the stigma and media coverage , there all after dementia suffers , I'm on holiday now with No travel insurance because it's far to expensive , it doesn't stop !!!
    and apart from medication nothing will stop it progressing
    Tony
     
  13. Beate

    Beate Registered User

    May 21, 2014
    11,703
    Female
    London
    Getting a diagnosis doesn't mean that person has to stop driving. Yes you have to tell the DVLA and if you or the GP thought he's unsafe on the roads you should say so. If not, they can take a yearly test and if they pass they can continue driving.

    Sometimes it's just a relief to know what's going on and a diagnosis helps with applying for Attendance Allowance which then leads to council tax exemption on the grounds of severe mental impairment. You can access support without a diagnosis but if you wanted day care or respite, it really is good to know which place would be best for him due to his diagnosis.
     
  14. MrsFish

    MrsFish Registered User

    May 20, 2015
    6
    One of the things I noticed straight away when I started reading these discussions - and the general information on the website - is how much difference it makes what stage you are at.

    MrFish is not anywhere near severe mental impairment or needing care at this stage. And as Lindy said, there is no way of knowing what timescale to expect.

    In one sense it feels as though we are about to embrace a problem we didn't really need to worry about yet.
     
  15. Countryboy

    Countryboy Registered User

    Mar 17, 2005
    1,416
    Male
    Cornwall
    #15 Countryboy, May 20, 2015
    Last edited: May 20, 2015
    Hi again MrsFish reading through the quotes we see two type of dementia sufferers those who have dementia diagnoses and require care and finial support , and those like me who what to carry on living a full active live " without" any support at all , but unfortunately the word dementia is very damaging it doesn't distinguish between us personally I have lived with the stigma now for 16 years no Change or decline whatsoever possibly go on another 16 if I don't keel over with some other medical problem unfortunately in my case diagnosed far to young And as I said previously can't go back sorry but just trying to make the point and show it from the dementia persons view point

    If difficult to read or understand well that my dementia for you but don't thinks is so bad !! On holiday in room on own 948 wife in room 944 with my female cousin so on holiday I take care of myself



    Cheers Tony
     
  16. Kevinl

    Kevinl Registered User

    Aug 24, 2013
    4,761
    Salford
    I think if you're on benefits then there is a benefit and if you're not on benefits then there's little benefit in getting an early diagnosis.
    To explain. If you are in receipt of benefits then once you are diagnosed any extra help will kick in, SS will take the needs of the condition into account and extra help may be available to those who need it most.
    Of itself the diagnosis it doesn't matter to those better off as there are some small financial benefits but there is also drawbacks; driving, bank accounts may be frozen, utility companies to deal with and plenty more. Getting a diagnosis is important but if time is on your side so too is structuring when it happens and how to best go about it.
    Obviously the most important thing is to get a diagnosis and start with the medication, putting it off isn't helping him but I can well understand the fear of being told formally that this is what's the matter with you, even if your heart of hearts you already know it must be devastating to have it said out loud.
    K
     

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