# Two Related Alzheimer's Disease Questions **URL:** \ **Category:** In My Humble Opinion\ **Created:** [December 1, 2020, 4:57pm UTC](https://boards.straightdope.com/t/two-related-alzheimers-disease-questions/926935 "2020-12-01T16:57:59Z")\ **Posts on this page:** 15\ **Page:** 1
**Author:** ![dolphinboy](https://sea3.discourse-cdn.com/straightdope/user_avatar/boards.straightdope.com/dolphinboy/32/330_2.png) [@dolphinboy](https://boards.straightdope.com/u/dolphinboy)\ **Post date:** [December 1, 2020, 4:58pm UTC](https://boards.straightdope.com/t/two-related-alzheimers-disease-questions/926935/1 "2020-12-01T16:58:00Z")
1. According to this [study](https://www.eurekalert.org/pub_releases/2020-11/uog-nti113020.php), medical scientists have discovered a change in tau proteins in the brains of people prior to them experiencing memory issues associated with Alzheimer’s Disease (AD). While I applaud any attempt to identify people who will ultimately succumb to this disease how does it really help? AIUI there are no treatments for AD; no way to stop it, let alone reverse the damage that has or will be done. What good is identifying disease early if there is no effective treatment today and none on the horizon? 2. I happen to have the AD risk gene APOE4 double allele, which makes me 10-20 times more likely to get AD in old age, and my mother and maternal grandfather both died from AD. I told my new PCP and asked him if there was any test I could take that would show if I am slowly slipping into AD as I age. His answer was there is no physical test they can do that would show AD is starting to occur in my brain, and the only thing I can do is go to a Neurologist and take a cognitive test to see if my memory was starting to fail. My previous PCP had told me that by looking at my MRI brain scan (I had one taken last year when I had a bout of vertigo) that there was no evidence of AD that he could see. So which one is it? Can they look at an MRI and tell if AD is starting or do they have to wait until autopsy to determine you had it? ---
**Author:** ![LSLGuy](https://sea3.discourse-cdn.com/straightdope/user_avatar/boards.straightdope.com/lslguy/32/5813_2.png) [@LSLGuy](https://boards.straightdope.com/u/LSLGuy)\ **Post date:** [December 1, 2020, 5:17pm UTC](https://boards.straightdope.com/t/two-related-alzheimers-disease-questions/926935/2 "2020-12-01T17:17:54Z")
> [@dolphinboy](#): > > AIUI there are no treatments for AD; no way to stop it, let alone reverse the damage that has or will be done. What good is identifying disease early if there is no effective treatment today and none on the horizon? Directly today it doesn’t. As you say. But science proceeds like a jigsaw puzzle, and which pieces get found first isn’t necessarily by design. Efforts to detect and to correct AD have been proceeding in parallel for years. And now we’ve had some success up the “detect” arm. That so far, is not matched with success up the “correct” arm. Being able to identify people at high risk of AD early, or those who are in fact developing the syndrome but not yet the symptoms, are exactly the folks you’ll need to monitor to learn more about disease progression. They’ll also be the people you want to test any experimental meds on. AD is a scourge, but among the 60- or 70-somethings who’d benefit from a treatment, it’s not a very common disease. Which means that absent any way to detect “pre-Alzheimer’s” they might have to enroll 1000 people in a trial just to stumble onto 15 who actually develop the disease to see whether the med works. If they could pick the susceptible 15 out of the crowd before the trial they’ll get much better answers much sooner. This [https://blogs.sciencemag.org/pipeline/archives/category/alzheimers-disease](https://blogs.sciencemag.org/pipeline/archives/category/alzheimers-disease) is a link to a prominent medical chemistry blogger who has worked on (failed) AD meds in the past. His ~150 posts on point date back to 2002. His latest is from 3 weeks ago. There is a treasure trove of good info in there about the waxing and waning of optimism about various treatments, teh various theories, how diagnostics could, can, and do work, and the sort-of progress that’s been made. Thomas Edison style we keep learning more of what doesn’t work. Which is slowly exposing the remaining landscape where something that does work might be found. It is not overall encouraging reading. AD is a _very_ difficult problem. But it is well-informed well-intentioned writing. If you want to understand what has been and is being done to possibly improve your lot, this is a darn good place to start. ---
**Author:** ![dolphinboy](https://sea3.discourse-cdn.com/straightdope/user_avatar/boards.straightdope.com/dolphinboy/32/330_2.png) [@dolphinboy](https://boards.straightdope.com/u/dolphinboy)\ **Post date:** [December 1, 2020, 7:45pm UTC](https://boards.straightdope.com/t/two-related-alzheimers-disease-questions/926935/3 "2020-12-01T19:45:52Z")
Thanks for the reference LSL Guy. I’ll look at those posts. As to your first point, having watched some of my relatives sink into a hole where they no longer recognize their spouses and children is an excruciating thing to watch, and living under the cloud of “you will likely get it someday” every time I forget someone’s name gives me anxiety, which in itself increases the chances of getting AD. I’m not sure how knowing that all of your memories are going to fade away gives anyone comfort except the researchers who want to study your decline and eventual death, Targeting research on finding how to identify people who are going to get AD may possibly help lead to a cure someday but does little to help those people in the short term until they find some treatment or medication that actually slows down or stops AD in its tracks. ---
**Author:** ![BippityBoppityBoo](https://sea3.discourse-cdn.com/straightdope/user_avatar/boards.straightdope.com/bippityboppityboo/32/5745_2.png) [@BippityBoppityBoo](https://boards.straightdope.com/u/BippityBoppityBoo)\ **Post date:** [December 3, 2020, 9:12am UTC](https://boards.straightdope.com/t/two-related-alzheimers-disease-questions/926935/4 "2020-12-03T09:12:27Z")
It might be useful to have a neuropsychologist give you a full cognitive assessment at this point in time so there is a baseline for comparison, especially since you have the markers and history to be at higher risk. A baseline is very important in subsequent years when trying to diagnose whether or not cognitive or behavioral changes are due to a dementia. ---
**Author:** ![JohnT](https://sea3.discourse-cdn.com/straightdope/user_avatar/boards.straightdope.com/johnt/32/15048_2.png) [@JohnT](https://boards.straightdope.com/u/JohnT)\ **Post date:** [July 23, 2022, 12:53pm UTC](https://boards.straightdope.com/t/two-related-alzheimers-disease-questions/926935/5 "2022-07-23T12:53:38Z")
> [@LSLGuy](#): > > It is not overall encouraging reading. AD is a _very_ difficult problem. But it is well-informed well-intentioned writing. If you want to understand what has been and is being done to possibly improve your lot, this is a darn good place to start. One of the reasons it was difficult is because the original paper which linked amyloid plaques to Alzheimer’s was not only wrong, but fraudulent. Careers have been focused, and billions have been spent on these treatments and it has all been for nothing. One of the most shocking crimes… and I don’t use that word lightly… of the past decades. [https://www.science.org/content/article/potential-fabrication-research-images-threatens-key-theory-alzheimers-disease](https://www.science.org/content/article/potential-fabrication-research-images-threatens-key-theory-alzheimers-disease) > **[Two decades of Alzheimer's research may be based on deliberate fraud that has...](https://www.dailykos.com/stories/2022/7/22/2111914/-Two-decades-of-Alzheimer-s-research-may-be-based-on-deliberate-fraud-that-has-cost-millions-of-lives)** > > Last month, drug company Genentech reported on the first clinical trials of the drug crenezumab, a drug targeting amyloid proteins that form sticky plaques in the brains of Alzheimer’s disease patients. The drug had been particularly effective in... ---
**Author:** ![dolphinboy](https://sea3.discourse-cdn.com/straightdope/user_avatar/boards.straightdope.com/dolphinboy/32/330_2.png) [@dolphinboy](https://boards.straightdope.com/u/dolphinboy)\ **Post date:** [July 23, 2022, 2:08pm UTC](https://boards.straightdope.com/t/two-related-alzheimers-disease-questions/926935/6 "2022-07-23T14:08:45Z")
I took your advice, BippityBoppityBoo, and my PCP referred me to a psychologist who performs cognitive testing. The testing took 2 hours and covered multiple cognitive skills and memory testing. The good news is that at age 67, my cognitive skills are entirely normal for my age, and there are no signs of measurable decline at this point. The not-so-good news is that I have two APOE4 alleles that still point to a much higher risk of AD than the average person. However, I’ve continued a moderate exercise program of walking/hiking 10 miles a day which should reduce my chances of getting AD. I recently started studying Stoicism, and it’s taught me not to worry about things I have no control over, and that’s helped reduce my anxiety. AD isn’t inevitable, and I’m hoping to push it off a while even if it does happen. ---
**Author:** ![PastTense](https://sea3.discourse-cdn.com/straightdope/user_avatar/boards.straightdope.com/pasttense/32/14550_2.png) [@PastTense](https://boards.straightdope.com/u/PastTense)\ **Post date:** [July 23, 2022, 2:42pm UTC](https://boards.straightdope.com/t/two-related-alzheimers-disease-questions/926935/7 "2022-07-23T14:42:44Z")
> [@JohnT](#): > > One of the reasons it was difficult is because the original paper which linked amyloid plaques to Alzheimer’s was not only wrong, but fraudulent. I think that it an exaggeration of the role of that paper which was published in 2006. The amyloid theory was published in 1991. > **[The amyloid hypothesis of Alzheimer's disease at 25 years](https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4888851/)** > > Despite continuing debate about the amyloid β‐protein (or Aβ hypothesis, new lines of evidence from laboratories and clinics worldwide support the concept that an imbalance between production and clearance of Aβ42 and related ... > **[History and progress of hypotheses and clinical trials for Alzheimer’s disease](https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6799833/)** > > Alzheimer’s disease (AD) is a neurodegenerative disease characterized by progressive memory loss along with neuropsychiatric symptoms and a decline in activities of daily life. Its main pathological features are cerebral atrophy, amyloid plaques, ... ---
**Author:** ![DSeid](https://sea3.discourse-cdn.com/straightdope/user_avatar/boards.straightdope.com/dseid/32/20194_2.png) [@DSeid](https://boards.straightdope.com/u/DSeid)\ **Post date:** [July 23, 2022, 5:27pm UTC](https://boards.straightdope.com/t/two-related-alzheimers-disease-questions/926935/8 "2022-07-23T17:27:36Z")
The association of beta-amyloid with AD is by now well established. Last year a medication was approved based on the medication’s impact on its build up. It was a controversial approval as it is not clear that the build up is the cause of the symptoms rather than a result and marker of the cause. > **[Plaque to basics: New research hints Alzheimer's treatments may be looking in...](https://www.fiercebiotech.com/research/new-research-hints-alzheimers-treatments-may-be-hunting-down-amyloid-plaques-wrong-place)** > > The buildup of amyloid beta plaques in the brain has long been associated with the development of Alzheimer’s disease, making them a frequent target for novel treatments of the neurodegenerative il | New research from NYU Langone suggests the first... Still high risk people like you OP are important to identify. I wonder if there is registry for volunteers to join research protocols of potential prevention approaches (beyond the vital lifestyle ones that you are already doing)? > **[Combination of healthy lifestyle traits may substantially reduce Alzheimer’s](https://www.nih.gov/news-events/news-releases/combination-healthy-lifestyle-traits-may-substantially-reduce-alzheimers)** > > Data from two NIH studies show 60% lower risk among those with highest number of healthy behaviors. ---
**Author:** ![DSeid](https://sea3.discourse-cdn.com/straightdope/user_avatar/boards.straightdope.com/dseid/32/20194_2.png) [@DSeid](https://boards.straightdope.com/u/DSeid)\ **Post date:** [July 23, 2022, 5:49pm UTC](https://boards.straightdope.com/t/two-related-alzheimers-disease-questions/926935/9 "2022-07-23T17:49:19Z")
> [@DSeid](#): > > I wonder if there is registry for volunteers to join research protocols of potential prevention approaches (beyond the vital lifestyle ones that you are already doing)? Apparently there is [https://www.alzheimers.gov/clinical-trials/alzheimers-prevention-registry](https://www.alzheimers.gov/clinical-trials/alzheimers-prevention-registry) ---
**Author:** ![dolphinboy](https://sea3.discourse-cdn.com/straightdope/user_avatar/boards.straightdope.com/dolphinboy/32/330_2.png) [@dolphinboy](https://boards.straightdope.com/u/dolphinboy)\ **Post date:** [July 23, 2022, 6:14pm UTC](https://boards.straightdope.com/t/two-related-alzheimers-disease-questions/926935/10 "2022-07-23T18:14:47Z")
I signed up for that registry a while ago but have never been invited to a study. I live in a large rural flyover state and wonder if that’s why they aren’t interested in me. By the way, I’m also asymptomatic for X-Linked Adrenoleukodystrophy, a rare disease that officially makes me a “white whale.” There are only a handful of us around, and you’d think someone would want to understand how I am asymptomatic even though I have the classic biomarker for the disease. Nobody is interested in me for that either. ---
**Author:** ![DSeid](https://sea3.discourse-cdn.com/straightdope/user_avatar/boards.straightdope.com/dseid/32/20194_2.png) [@DSeid](https://boards.straightdope.com/u/DSeid)\ **Post date:** [July 23, 2022, 6:34pm UTC](https://boards.straightdope.com/t/two-related-alzheimers-disease-questions/926935/11 "2022-07-23T18:34:47Z")
I would think so. ---
**Author:** ![digs](https://sea3.discourse-cdn.com/straightdope/user_avatar/boards.straightdope.com/digs/32/14889_2.png) [@digs](https://boards.straightdope.com/u/digs)\ **Post date:** [July 23, 2022, 11:27pm UTC](https://boards.straightdope.com/t/two-related-alzheimers-disease-questions/926935/12 "2022-07-23T23:27:04Z")
> [@dolphinboy](#): > > have never been invited to a study… nobody is interested in me for that either. I know the feeling. My father died of Alzheimer’s, and my sister and I were both considered for a study. Sister (“back east”) was brought in right away for testing, and was told she had no evidence of Alzheimer’s! But me? I waited and waited and called and called for months and FINALLY heard back from the study here (midwest “flyover”). By then, they were using a blood test for genetic markers to see if you “got” to be in the study. They called with the “good news”: _“Your lab results mean you have a probability for Alzheimer’s, and you get to be in the study!”_ I was immediately depressed, but also had a strong feeling that they’d made a mistake… …which turned out to be true two weeks later _(“Oh, you must be so disappointed that we misread your test, and that you can’t be in the study now.”_ Ummm, NO!) Besides, now I’m too old for Early Onset Alzheimer’s! ---
**Author:** ![LSLGuy](https://sea3.discourse-cdn.com/straightdope/user_avatar/boards.straightdope.com/lslguy/32/5813_2.png) [@LSLGuy](https://boards.straightdope.com/u/LSLGuy)\ **Post date:** [July 23, 2022, 11:50pm UTC](https://boards.straightdope.com/t/two-related-alzheimers-disease-questions/926935/13 "2022-07-23T23:50:37Z")
> [@digs](#): > > Besides, now I’m too old for Early Onset Alzheimer’s! Now all you need to do is die before you’re old enough for Late Onset Alzheimer’s. Easy peasy. 😉 ---
**Author:** ![digs](https://sea3.discourse-cdn.com/straightdope/user_avatar/boards.straightdope.com/digs/32/14889_2.png) [@digs](https://boards.straightdope.com/u/digs)\ **Post date:** [July 24, 2022, 3:04pm UTC](https://boards.straightdope.com/t/two-related-alzheimers-disease-questions/926935/14 "2022-07-24T15:04:05Z")
> [@LSLGuy](#): > > Now all you need to do is die before you’re old enough for Late Onset Alzheimer’s. When I leave my family the note that says “Gone flying-squirrel-suit-gliding in the Alps. Back in a month, if ever!”, I’ll be sure to quote your post. . eta: Levity for the OP. My dad had Alzheimer’s and cancer… and a great sense of humor. His favorite joke at that time: Doctor told me he had bad news and worse news, _“Okay, give me the bad news.”_ “I’m afraid you have… cancer.” _“Oh, no! What’s the worse news, doc?”_ “I’m afraid you also have Alzheimer’s Disease.” _“Well, at least I don’t have cancer!”_ ---
**Author:** ![dolphinboy](https://sea3.discourse-cdn.com/straightdope/user_avatar/boards.straightdope.com/dolphinboy/32/330_2.png) [@dolphinboy](https://boards.straightdope.com/u/dolphinboy)\ **Post date:** [July 24, 2022, 4:32pm UTC](https://boards.straightdope.com/t/two-related-alzheimers-disease-questions/926935/15 "2022-07-24T16:32:14Z")
My mom had AD and lung cancer. The ONLY saving grace of Alzheimer’s was that she forgot she had cancer; we never reminded her of that. Her COD was undetermined since they didn’t know which of the two ultimately killed her. There was no autopsy to find out.