A blood test can diagnose if you’ll get Alzheimer’s. Would you take it?

Investigators reported that they’ve developed a blood test that can diagnose Alzheimer’s disease. It’s pretty accurate, and it may allow someone to know if he’s at high risk to develop Alzheimer’s years before the symptoms become manifest.

But is it too much information?  Would you take the test?

What is Alzheimer’s?

Alzheimer’s is a neurodegenerative (causes the destruction of neurons [brain cells]) disease that is the leading cause of dementia.  It is also fatal.

Dementia is a deterioration of cognitive abilities such as memory loss, decreased ability to concentrate loss of good judgment. It can also cause personality changes and emotional disturbances. Patients with Alzheimer’s develop dementia. Dementia can be caused by other diseases as well such as: tumors, strokes, Parkinson’s disease, head trauma and others.

Older couple via Shutterstock

Older couple via Shutterstock

Over 5 million Americans have Alzheimer’s disease. This disease can often start insidiously and gradually worsen. The patient will need more and more assistance. He may start off just needing the occasional reminder. Later he may not only need reminders, he may need help with some tasks: eating, bathing, using the bathroom and others. Eventually, he may need 24/7 care.

The time from diagnosis of Alzheimer’s (using clinical examination to look for when the first signs are apparent) to the patient’s death is on the order of 5-10 years.

The diagnosis of Alzheimer’s till now could only definitively be done through doing a brain biopsy or, after death, by examining the brain at autopsy. So until now, the diagnosis of Alzheimer’s was made by eliminating (“ruling out”) other causes of dementia. If nothing else was causing the dementia, then Alzheimer’s was the culprit.

Some forms of dementia are treatable and may improve. This isn’t the case with Alzheimer’s. In spite of using the few available medications, the disease progresses and the patient eventually dies. Death from Alzheimer’s ranks in the top ten causes of death in the US.

Diagnosing Alzheimer’s

When brain cells die, they burst and their contents are scattered locally. The contents of the cell and its membrane are proteins, lipids and carbohydrates and some other components. Quantities of those substances find their way into the blood. Some of the proteins are fairly unusual and not normally seen in the serum in significant quantities. Some may cause an immune response where antibodies directed against these proteins are formed. Work going back several years showed that some of those proteins might be useful to predict if a patient had a higher risk for getting Alzheimer’s.

Other scientists focused on the lipids (fats) released from the cell and cell membrane. This lipid research was just recently released. Again, some of those lipids aren’t commonly encountered in significant quantities in the blood of patients who aren’t going to develop Alzheimer’s (i.e., those who don’t have neurodegenerative disorders.)  If the test is positive, it may be years till the first signs of dementia are noted, and more years before the disease progresses to severe impairment and then death.

Investigators feel that, perhaps, there hasn’t been much success in treating Alzheimer’s disease because treatments start too late. That is, the patient isn’t diagnosed until he is showing significant signs of dementia. The thought is, that with earlier diagnosis, current treatment methods might be more effective. And, perhaps, by studying these patients before Alzheimer’s becomes too far advanced, additional insights on the mechanism and treatment of the disease might be found.

Would you want to be tested? Would you want to know?

But now an interesting question arises. Since the test detects a disease that is progressive, incurable and invariably leads to death, would you want to be tested?

Knowing all that a positive result implies, would you want to know if you’re positive or negative?

I’m sure that some people would, and others wouldn’t, want to be tested. Since there’s a genetic predisposition to Alzheimer’s, would your choice on whether to be tested be affected by a family history of Alzheimer’s?  And if so, would the family history make you more or less likely to be tested?

There may be an association between head trauma and Alzheimer’s. And a link between cardiac health and the development of Alzheimer’s. So if you had head trauma in the past, would you be more interested in your risk? An alternate option is to have the test done, but don’t get your results. Let your doctor have them. He can keep the results secret from you but keep a closer eye on you for signs of dementia if the test is positive.

This question of testing doesn’t just hold for Alzheimer’s. There are other diseases that are progressive and incurable — Huntington’s disease (formerly Huntington’s chorea) comes to mind for one.  So it’s a much larger question that we may be facing more and more as science advances.

So, it’s your choice – to test or not to test. Which would you choose?  Feel free to weigh in via the comments, I’ll join you there in a bit.

Mark Thoma, MD, is a physician who did his residency in internal medicine. Mark has a long history of social activism, and was an early technogeek, and science junkie, after evolving through his nerd phase. Favorite quote: “The most exciting phrase to hear in science... is not 'Eureka!' (I found it!) but 'That's funny.'” - Isaac Asimov

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34 Responses to “A blood test can diagnose if you’ll get Alzheimer’s. Would you take it?”

  1. BillFromDover says:

    But if you have lost most of your memory, how would you know what you forgot?

    My mother had this disease so bad she didn’t recognize me and her other son.

    She had a glorious 100th birthday party.and died shortly thereafter, perhaps not the happiest person in the world, but certainly content.

  2. DGT says:

    Definitely I would want to know. Having seen several relatives die the slow, awful death that Alzheimer’s brings, I would want to plan my Kevorkian-style exit before it got too bad. I really can’t imagine a worse way to die for me (or for my family to have to live through) than Alzheimer’s.

  3. Lawerence Collins says:

    My father died from this. I am now the same age he was, when he first started showing signs of early on set. As it is, i have an in curable, chronic illness. I would want to know.

  4. 1jetpackangel says:

    I’d say probably not. I mean, I’m already terrible with names. If I got the test and it popped positive I’d spend the rest of my life thinking, “I forgot to get the milk again. Is this my Alzheimer’s kicking in?” Or some jerk could use it as an excuse for not doing something: “Hey, why weren’t you at the meeting to deliver your presentation?” “Oh, uh, did I mention I’m a high risk for Alzheimer’s?”

  5. Tony Mac says:

    Of course I would take it…if for no other reason than to let my children know they may at risk…and their children. My son has Diabetes ! although ther is no genetic remnant of it in our family. Should hew have his children tested??? Of course he will. Perhaps they can take steps to avoid it in their future…As for testin for Alzheimer’s…I’d do it in a heartbeat…if I can remember where it is I’m supposed to go…

  6. Clevelandchick says:

    Life without hope is no kind of life. I have yet to hear of a promising new treatment for Alzheimers. If there were some real break through in the area of a cure and not just treatment to delay the inevitable, then I’d consider it.

    Like any disease, it’s different in every person and depends on when it onsets. Could the test determine whether it was going to be early onset or late? Could the test determine the severity?

    But regardless, a disease like Alzheimer’s is insidious because it robs you of your memory. So, if you take that test and get a positive result, you’ll go through life knowing at some point you’ll no longer recognize your loved ones Devastating. I can’t imagine knowing that you had a good chance at getting it in your 20s or 30s would not change how you lived your life.

  7. Clevelandchick says:

    No, I would not. There’s no cure so what is the point? To ruin the rest of your life waiting for the shoe to drop? I don’t think anyone believes they won’t get something at some point because in the back of our minds we all know at some point we’ll be on the other side of the dirt.

  8. pappyvet says:

    Would I be tested? No.

  9. docsterx says:

    Agree. However, depending on the surveys I mentioned above, neither were some of the respondents there. Some were volunteers, some were paid for taking a survey, some were college students, some were healthcare professionals. So there may have been some skewing of the data based on those factors.

  10. Silver_Witch says:

    I think that would be my fear Ford Perfect – what if you employer found out?

  11. Silver_Witch says:

    Okay here is my other favorite old folks thingie!

    Doc my left knee is killing me….

    Witch, you are getting older you know….

    But Doc my right knee is just as old and it doesn’t hurt!

  12. Silver_Witch says:

    I would not be tested……there is no cure, there is no hope…so going blindly into the night would be my choice.

  13. BeccaM says:

    I think the problem, Mark, is so many of us were taught to believe that Alzheimer’s was a horrific slow-death sentence, with our identities, memories, and our dignity stripped away with each passing day.

    Most of us have this ingrained assumption, “If I’m diagnosed, there is no effective treatment. And I’ll spend the next X years wondering every time I forget where I put my car keys whether this is the beginning of the end.”

    It’s like it was with certain forms of cancer a few generations ago. Find a lump = You’re gonna die, soon. Easier and less mentally stressful not to look for those lumps or irregular moles.

    People need hope. Until these promising new treatments really do stop the dementia, as opposed to maybe/kinda slowing it down, a lot of folks aren’t going to want to know. I think once the treatments become more effective and people learn that a diagnosis of high Alzheimer’s risk doesn’t equal an inevitable future of dementia, more will be willing to seek out testing.

    BTW, the situation with HIV testing was similar not that long ago, too.

  14. Indigo says:

    Painfully so. It’s that one moment years from now when you look in the mirror in the morning and momentarily wonder who that is . . . then’s when it hits you. OMG!

  15. Indigo says:

    That’s not surprising but the commentators here do not quite represent a common denominator of opinion from the entire national spectrum.

  16. docsterx says:

    About a quarter of a million Alzheimer’s patients in the US began showing symptoms in their 40s-50s and not later, as typically happens with most cases of AD.

  17. docsterx says:

    There is a little early information that if you “age healthily” (i.e. exercise, maintain normal weight, treat other medical conditions (not just cardiac), etc.) you may slightly decrease risk of AD.

  18. docsterx says:

    These responses are interesting. Some studies have been done on this type of question (would you want to know if you had a fatal condition years before it manifested) and, in the ones I’ve seen, there were more people opting to refuse testing because they didn’t want to know than the way people are responding here. If I remember correctly about 25-40% of people said that they wouldn’t want tested.

  19. heimaey says:

    I guess it’s true what they say. There’s a young person in every old person saying “what happened!?!”

  20. cole3244 says:

    my mother died from alzheimers i will be sure to ask my gp and take it my next appointment, i want to know.

  21. bandanajack says:

    i am 70, dude, you never know. i never thought i would live this long either, although i don’t think there is much i would change, i might have taken a bit better care of my body.

  22. nicho says:

    The real question is whether corporations should be allowed to make that part of your pre-employment physical. If they can now make you pee into a cup without a warrant or court order, why can’t they do this?

  23. 2karmanot says:

    I used to think that way—-thirty years ago. Imagine my surprise to have survived this long.

  24. kingstonbears says:

    Yes and for the same reason I get tested for HIV. The possibility that some of the treatments, if started earlier, would help is enough of a reason for me.

  25. Indigo says:

    Yeah . . . I said that 25 years ago, somehow wandered into my mid 70s and I’m still here. Uf-da!

  26. Indigo says:

    If Medicare covers it, yes. I’ll take the test.

  27. Ford Prefect says:

    On the one hand, I’d like to know if there are things I can do to help produce a better outcome for myself.

    On the other, we live in a world of No Privacy now and that means any test you take will be data mined by corporations and thusly potential employers and so on. IOW, you may be opening yourself up to discrimination at work or in terms of health insurance (not to be confused with healthcare), since your data is out there for paying customers to access.

    I would reconsider if I had a doctor that didn’t digitize medical files, as those are still protected by law. But since I don’t, I can’t trust him to protect my privacy.

  28. kokoretsi says:

    As depressing as a positive result would be, I’d want to know so I could prepare my family and affairs in advance.

  29. Paul Barwick says:

    I’d probably forget to. Seriously though, yes. I’d get the test. I don’t subscribe to the “ignorance is bliss” school of thought.

  30. pricknick says:

    Sure I’d get the test. If positive, it gives me time to plan my demise in a way that suits me, not the doctors.

  31. Anonymiss says:

    Definitely I would test. Knowledge/information is power. Then I could make decisions about how to live my life. But now having said that, I don’t have any of the aforementioned risk factors: family history, head trauma, heart issues. I’m not going to run right out and find when and where I can get the test. but if my doctor offered it to me at my annual check-up, absolutely, I’d take it. And if it were eventually offered as an over-the-counter test, again, I would buy and test. And then I would update my health care power of attorney and my living will.

  32. percysowner says:

    I would test. If the results were negative, then whew. If they were positive, I could start planning what to do when things start manifesting. Start looking at long term care facilities that cater to various degrees of infirmity i.e. independent to assisted living to nursing home. I could also warn my daughter, or at least write a letter with what care I want so that when the time comes she wouldn’t be having to make decisions guessing what I want.

  33. heimaey says:

    Prob not. I don’t plan on living that long.

  34. bkmn says:

    I would want to get tested so that if the test came back positive I could start to make arrangements for my care. I would rather find out earlier than later that someone I thought I could rely on is not willing to assist when the time comes.

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