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.

Early Warning Test for AD

Discussion in 'Dementia-related news and campaigns' started by Skye, Oct 15, 2007.

  1. Skye

    Skye Registered User

    Aug 29, 2006
    17,000
    SW Scotland
  2. Canadian Joanne

    Canadian Joanne Volunteer Moderator

    Apr 8, 2005
    16,111
    Toronto, Canada
    Funny this should come up now. I was literally just thinking about the possibilities of my getting into an early detection program, maybe having an MRI done. I know it's silly but sometime when I forget something I get a little anxious. I KNOW I'm being silly but still....

    If there was a definitive test, I think I would take it.
     
  3. jenniferpa

    jenniferpa Volunteer Moderator

    Jun 27, 2006
    39,439
    Joanne - does Canada have something like the US clinical trials program? I'm wondering if you could find a screening program that way. Actually, I think clinicaltrials.gov lists world-wide trials (if you chose the beta version you can get a map of all trials). You may not be old enough for most of these though - they seem to mostly have a lower age limit of 60.

    Edited to add - something like this if it was available to you might work http://clinicaltrials.gov/ct2/show/NCT00478491?term=alzheimers&recr=Open&type=Obsr&rank=9
     
  4. Grannie G

    Grannie G Volunteer Moderator

    Apr 3, 2006
    69,594
    Kent
    I would only take a test for something for which there`s a cure.
     
  5. Brucie

    Brucie Registered User

    Jan 31, 2004
    12,413
    near London
    As always, great sense in what you say.

    If, however, the test was absolutely definitive, and I had real suspicions, then I'd take it and most likely use my own cure.
     
  6. Canadian Joanne

    Canadian Joanne Volunteer Moderator

    Apr 8, 2005
    16,111
    Toronto, Canada
    I'm with Samuel Johnson

    So I would want to know ahead of time. When would I want to know? I'm not certain, but I guess I want time to do as much as possible while I could. The answer is, of course, to do everything now. I'm thinking in terms of blowing all my savings & retirement fund while I can and then settling down to be a burden on society :D.

    Since I've had a lot of friends & relatives die this year, I have started calling people I've fallen out of touch with. It's amazing sometimes how long it's been. Time just runs through our fingers like water.
     
  7. Tender Face

    Tender Face Account Closed

    Mar 14, 2006
    5,379
    NW England
    Personally, I've always considered myself in the 'rather not know' camp - (especially with limited genetic history) but I would take a test for anything now to plan for any care and provisions I may or may not need for myself if only to prevent my son from heartache ...... :(

    Sad my thinking has changed this way ..... :( Or maybe, only through this experience, I have learnt to be less selfish ........

    Karen, x
     
  8. Skye

    Skye Registered User

    Aug 29, 2006
    17,000
    SW Scotland
  9. Tender Face

    Tender Face Account Closed

    Mar 14, 2006
    5,379
    NW England
    Brilliant, Hazel, I agree - and just happens to endorse a lot of my own personal sentiments on the matter ;) ....... only one bit that bothers me ...

    (Quote) 'Alzheimer's is an inheritable condition ' ..... (Quote)

    Frightens me to bits and pieces when national press quote something like this without a 'caveat' ......... 'that those are the opinions of ... blah... blah .....'

    Love, Karen, x
     
  10. Canadian Joanne

    Canadian Joanne Volunteer Moderator

    Apr 8, 2005
    16,111
    Toronto, Canada
    AD inheritable

    Karen,
    No need to fret - there is Familial Alzheimer's Disease (FAD), which is the one that can be determined by a test (the test has been available for 6 years that I know of). But FAD only accounts for 5 to 10% of cases. The overwhelming majority of AD is what is referred to "sporadic". It just happens. Yes, there is agreement that certain factors may help contribute (head trauma, etc.) but that's all.

    So you needn't worry - yet:eek:!
     
  11. jenniferpa

    jenniferpa Volunteer Moderator

    Jun 27, 2006
    39,439
    Is this not why the article says inheritable rather than inherited i.e the former meaning "may be" and the latter meaning "will be"?
     
  12. Canadian Joanne

    Canadian Joanne Volunteer Moderator

    Apr 8, 2005
    16,111
    Toronto, Canada
    #12 Canadian Joanne, Oct 18, 2007
    Last edited: Oct 18, 2007
    What I am thinking of is a type of AD which is identifiable by a genetic test. It will absolutely tell whether or not a person will develop AD. It is very early onset AD and symptoms can appear as early as the late 20s.

    There is a very good documentary made here about 6 years ago about a young girl (21 or so) whose mother (early 40s) was suffering from early onset FAD. The documentary followed her for a year, chronicling her decision process about taking the test to find out if she had the genetic for this type of AD. She did finally take the test and she did indeed have the gene. This is a type of AD where it is a 50/50 chance - either you inherited the gene or not. There had been a great deal of AD in her mother's family.

    It was a very moving piece. I will try to find out the name - I know it was her first name & Choice.

    She has since gone on to become a spokesperson for AD - she completed her education. She is very inspiring.

    I found out the name of the doc - it is called "Amanda's Choice" and she is now 30. Her mother started declining at the age of 39.
     
  13. Sweet Pea

    Sweet Pea Registered User

    Dec 20, 2006
    24
    North Yorkshire
    My Paternal grandmother had AD and my Dad had AD. There does seem to be a genetic link, and for many years I have considered that I may develop the illness. I'm 44 now and have two teenage children and a loving husband. If I was to take the test, and find out that I will develop AD, I wonder how my relationship with my family would suffer - they have seen AD develop, but I wouldn't want to be treated any differently. However, I feel as though I am living under a cloud all the time, and wondering if I will develop it in later years. I've already changed my diet in small ways, for example eating lots of fruit and veg and traking folic acid tablets daily. If I forget something, I think that maybe that is the start. also, for a split second a year or so ago, I 'forgot' how to go up some stairs in a large department store - that feeling made me very frightened, and I still remember it. I'm sorry, I'm all over the place as you can tell...what I'm trying to say is that i don't know whether I'd take the test or not, there's a lot of pro's and con's. I shall watch the debate with interest

    Sweet Pea
     
  14. Canadian Joanne

    Canadian Joanne Volunteer Moderator

    Apr 8, 2005
    16,111
    Toronto, Canada
    Sweet Pea,
    The AD I refer to is extremely early onset (i.e. a person at 44 would be at the end stages, if not already passed away).

    I understand your concerns - my mother is considered earlier onset (formally diagnosed at 64 with odd behaviours noticeable a couple of years prior to diagnosis) so when I forget something, I do tend to wonder sometimes. Wonder and worry.

    I have to know things - I like to deal in facts so I think I would take the test. Having said that, it would be quite depressing to find out I really was on that long and frightening journey.

    The best way around it all is to live life to its absolute fullest now. Follow your dream, make the most of all opportunities. As I've mentioned earlier, I've started contacting old friends I haven't been in touch with for years. You know how we drift away from people. I'm trying to change that drift.
     
  15. chip

    chip Registered User

    Jul 19, 2005
    400
    Scotland
    My Mum was 60, her brother also 60, their other brother in his 70's. My husband 49 no relation to my mum's side of the family. It doesn't look good for my son. But i suppose it depends on what side of the family he takes after. I'm hoping as i've been told i take after my dad's side there is no Dementia on his side phew
     

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