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    • CommentAuthorbille
    • CommentTimeMay 13th 2009
     
    Just caught a report by CBS that they have had good results predicting Alzheimer's probibility by looking at a number of items. I have not looked on li ne but sure that there will be an arrticle on the story. It could be good news for those who have EOAD in their family.
  1.  
    That would be ok after they find a cure but before then, would you want to know? Who would Insure you?
    • CommentAuthorShanteuse
    • CommentTimeMay 13th 2009
     
    So you have a one in eight chance of being mis-predicted -- so if you really AREN'T at risk but get the prediction, you'll spend your life thinking you've got it, and if you get the "all clear" prediction, you'll still have that nagging doubt that maybe you were the one in eight who was mis-predicted....

    no thanks.....
    • CommentAuthorJean21*
    • CommentTimeMay 13th 2009
     
    Anyone who has a LO with dementia and knows what it is like wouldn't want to know if there is a chance they could develop it. What really irritates me about these predictions is someone who should know better says if you knew you could change your lifestyle. HOW when there are lawyers, doctors, college professors, engineers and blue collar workers who are just as smart as any of the above mentioned careers?
    • CommentAuthorCharlotte
    • CommentTimeMay 13th 2009
     
    I read something a few weeks ago about a test that was very reliable - think it was testing the spinal fluid. The purpose, which makes sense, is if it comes back positive, once they get drugs/vaccine that will stop or prevent it, they can give it earlier. Hope being that it will never progress. With that in mind, when they get drugs/vaccine to stop it, then knowing would be good. IMO
    • CommentAuthorShanteuse
    • CommentTimeMay 13th 2009
     
    Charlotte, I agree -- that WHEN they can treat it, knowing so that you can start treatment earlier would be great. But UNTIL there is a treatment, it is irresponsible to even talk about testing people with a test that is only 88% accurate (at best).
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      CommentAuthorStarling*
    • CommentTimeMay 14th 2009
     
    I don't think it is irresponsible to talk about a test unless the test is being given for the wrong reasons. Just think about those of us who went to the family doctor with "a feeling" and didn't get sent to a neurologist for a very long time. I think this test (which is basically just a bunch of questions) and an easy mini-mental ought to be given as a screening device by the family doctor under these circumstances.

    I saw the bit on CBS, and it sounds like this is what they are working on. Something a family practice could use to decide who to send on to the neurologists when the spouse comes in with a request for an assessment.

    I feel this way because if my husband had gotten the dementia drugs a year or two earlier we might be having a better quality of life right now. There is treatment now. There just isn't a cure.
    • CommentAuthorShanteuse
    • CommentTimeMay 14th 2009
     
    Starling, if they use it for THAT purpose, that's one thing -- I can see your point. However it is not conclusive, and an 88% effectiveness rate is really pretty low to be basing such an important diagnosis on. I'd still be concerned, even if the test procedure came back negative for ALZ, that the inaccuracy might have given a false negative. However, this news story seems to be more in the line of what they did on 60 Minutes, when they showed some quack company claiming to be able to give people their percentage of risk for a whole bunch of diseases, including ALZ. It was obvious that the company was just trying to get business for their expensive and unproven analysis. The concern is that people who are not exhibiting symptoms will have this inaccurate test done, and then make important life decisions based on something that may or may not be true.
    • CommentAuthordoneit
    • CommentTimeMay 14th 2009
     
    I read the entire story. I believe forewarned is forearmed. When my husband started exhibiting problem behavior I had not ever considered dementia as the cause. I would have been a kinder and more understanding caregiver. We would have sought medical eval much earlier. Breast cancer has killed most women in both sides of my family. Knowing that fact won't prevent breast cancer in my children-but you better believe we will be much more proactive and vigilant.
  2.  
    Here are some quotes from a summary of the article for the medical profession. It is still very early, and needs more validation and fine-tuning. As Dr. DeKosky said, this test will be of most value when there is some sort of preventive treatment, so that catching the disease early would be useful.

    The index had a positive predictive value of 56% and a negative predictive value of 90%, yielding an 88% rate of correct classification of dementia status through six years.


    Predictive accuracy was slightly higher for those who were younger than 75 and for those who lacked the APOE e4 allele.


    Accuracy was also higher for mixed dementia than for Alzheimer's or vascular dementia, although it was high across all groups.

    Steven DeKosky, M.D., vice president and dean of the University of Virginia's School of Medicine and former director of the Alzheimer's Disease Research Center at the University of Pittsburgh, suggested that the tool would be most helpful once effective preventive medications are developed

    At this stage it would be prudent to use this test as a research tool, rather than as means to manage patients in general medical practice until further validation of the predictive utility of the test.
  3.  
    Thank you for this info, Marsh. I agree it should be used as a research tool until a preventive treatment is found.
    • CommentAuthorbille
    • CommentTimeMay 14th 2009
     
    If I had a little more good information, I think that Carol and I would have done more of the things we have talked about for so many years. Like more time at the beach, trips to see old friends and places, More attention on ourselfs, and certainly more enjoyment of each other. I have suspected something since 1996. Carol never really thought much about having AD, even though her father had confirmed AD and in assisted living facilities.
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      CommentAuthorStarling*
    • CommentTimeMay 14th 2009
     
    I've heard a bit more about the test today. The local CBS station did a bit with their own medical reporter. It is to be used by people OVER the age of 65 only and by family doctors as a SCREENING test.

    No one is going to manage anyone with this test. That isn't what it is for. It is so a family doctor will have something they can use so they know that they need to pass a patient on to a specialist. Right now, they don't have anything that will do that. And in my opinion an 88% positive test is a very good one for what it is intended for.

    Look, I've had mammograms every year for years now. And I've experienced a bunch of false positives. They have never sent me to surgery with a false positive. They just have you come back and they do bigger and better pictures and an ultra sound. The one time I had surgery is was a REAL positive, "a bizarre cluster of cysts". I don't think mammograms are accurate to the 88% level, but we women do them anyway. They are good enough to pass you on to someone who can do bigger and better tests, and/or surgery were appropriate.

    If they intended to screen 20 year olds I'd agree that it was pretty worthless. But screening 65 year olds makes a lot of sense.
    • CommentAuthorCharlotte
    • CommentTimeMay 14th 2009
     
    On the home page here there is a link to articles regarding the testing. It says they may not be getting the true results because they are testing people too far into the disease. They need to be testing people in the early stages.

    The VA has started giving a 10 question test to veterans when they go in for appointments. Art had this on his appointment a couple weeks ago and the doctor said it was something they have to start doing. I don't know if they have to be over a certain age or not - I would think so. Art scored a 25 on it which made him feel good when he was told 27 was normal.