How Do You Live Knowing You Might Have an Alzheimer’s Gene?

One family with a genetic mutation is helping scientists find a cure.

Comments: 101

  1. I was blown away at the strong resemblance of all the family members, they could have been twins! I thought of pictures of my family and how dissimilar we appear. Could this have any bearing upon this horrible disease?

  2. This is highly unlikely, as "family resemblance" is polygenic, that is, determined by many genes. Some families do tend to have a stronger resemblance to one another, but I doubt it is related to Alzheimer's Disease or other forms of dementia. It is not a "syndrome" similar to Down Syndrome, which is due to a chromosomal abnormality and in which there are numerous features which are quite easily recognizable.

  3. Kay you might want to do simple sibling hereditary testing to confirm you all have the same parents. Generally siblings tend to have noticeable facial similarities of one sort or another so it makes one think.

  4. How does one live knowing this? What a ridiculous question....

    Consider the validity of this statement: Human life is a sexually transmitted condition that always proves fatal.

    How does one live knowing that life is, well, fatal? Is there any business offering the use of U-Haul-like trailers for attachment to funeral hearses?

    For every person alive today approximately 20 people have died, half women and half children. How can we all live knowing that we walk on skulls, a collection to which each of us will soon contribute?

    Consider the case of Terri Schiavo: she dieted so strictly that her potassium levels dropped to levels that triggered a heart attack that then deprived her brain of oxygen for several minutes; her body was revived and kept on feeding tubes for more than a decade, only to expire after the tubes were removed. An autopsy revealed that 'she' had been gone for more than a decade.

    How does one live knowing that death is but 4 minutes away should one's brain be deprived of oxygen by something as apparently salutary as dieting? How does anyone diet knowing this?

    One lives with the genetic hand dealt by fate, and plays it with the vitality consistent with one's genes and one's environment. Alzheimer’s disease is overrated, however miserable its progress may be.

  5. Thanks for putting this in the larger context of the human condition. We all live for a few brief moments on this planet and yet we act like we have all the time in the world. Why do people suddenly change their lives (occupations, spouses, geography, etc.) upon finding out they might only have a few years or decades to live? Is the bucket list so important if they are going to vanish from existence in a few years? Hopefully this article will motivate us to reexamine how we live our lives, knowing how brief our time is, making a difference in the lives of those we love and care for, including our neighbors, community, and environment. Thanks to the NYTimes for excellent and thought provoking articles like this one.

  6. Knowing that one is at high risk for Alzheimer's is a bit more complex than simply being aware of life's fragility.

    There is a strong history of Alzheimer's in my family, and there is a good chance that I will develop it in my late 60s or early 70s. Knowing this has changed my behavior, both positively and negatively, in ways that a general awareness of mortality do not. On the positive side, my long-term care insurance is always fully funded and I actively plan to fulfill my life dreams, rather than letting them fester in the "maybe someday" file. On the other hand, I've another excuse to procrastinate on cancer screenings and other preventative medicine.

    While it's true that I could be hit by a bus tomorrow, somehow that fact is not as motivating as the knowledge that, assuming I survive the killer bus, a specific debilitating and fatal disease awaits.

  7. Thank you for providing this scientific research information on Alzheimer's Disease. This is one of the reason why I always read The New York Times.

    My only quibble is that we do not do enough scientific brain research into other serious mental illnesses. Science has shown unequivocally that schizophrenia, manic depression and allied disorders are brain diseases.

    Yet we are still presented with mythical brambles created by sociology around these no-fault chronic brain diseases.

    They are medical diseases and deserve appropriate science to remove the brambles that sociology has wound around them.

    How can we move our society to dispense with the sociological misrepresentations about them and turn to appropriate medical research to inform us?

    A powerful, trustworthy newspaper like yours could be a big help in bringing attention to the scientific truth about SMI. That's the only way we will find the cure for them .

  8. Before any of us speaks about any miraculous gene cures for this horrific disease, we
    should recall that "alt" is German for old and "heim" is German for home; so the name "Alzheimer" roughly translates into English as "resident of an old-age home." Another one of G-d's bad jokes I guess, but possibly also the clearest warning we may ever get that that no cure for this thing is imminent or ever likely to be found.

  9. Alzheimer was the name of the doctor who discovered the disease.

  10. I wonder, is there any difference between the Alzheimer one gets with the gene vs. the one people get without the gene?

  11. That's a very good question, and one that definitely concerns the scientists studying this. The fact that familial Alzheimer's can arise from different genes that affect the same underlying molecules and cause similar symptoms argues for a single disease process. But it is also increasingly clear that some age-associated cognitive difficulties, which might once have been called Alzheimer's, have other causes.

  12. That's an important distinction that scientists have been trying to understand. Clinical symptoms vary in both patients with a discovered gene and those without, but they are tied together by the presence of the hallmarks of the disease.

    These hallmarks are the presence of beta-amyloid plaques, neurofibrillary tangles, and neuritic plaques. The various genes discovered in this article affect different mechanisms that lead plaque accumulation: some might affect the actual amyloid protein, while others change the way it is produced and processed. In the future, a patient might be prescribed specific drugs depending on what process is affected.

    In patients that don't carry a discovered gene we don't have a clear picture of how the plaques build up, but it wouldn't be surprising to see similar mechanisms at work.

  13. I can so relate to "We’re just hanging in there. Life can be cruel." After years (7? 8? more?) of wondering if Alzheimer's was the cause of my mother's confusion, anger, falling and pain, a pet scan last week confirmed the diagnosis with certainty. So now we're really "in it" and fear about my own fate - and more importantly, that of my children - is at an all-time high. I don't know what to say when people ask me how I'm holding up, because what choice do I have? The kids wake up smiling and hungry, work is still demanding, laundry unrelenting -- life is still here.

    I occasionally write about our story at http://weepingformemories.blogspot.com

  14. "How do you live knowing you have a 50 percent chance of developing a degenerative brain disease? A family with an Alzheimer’s gene is helping scientists find a cure."

    In the meantime, don't have children.

  15. There is life before Alzheimer/dementia and isn't life to be valued, in spite of an imagined ending? Noone knows for sure... There is still no definitive knowledge of how the gene mutations occur (allele mentioned by Josh S. 3 comments above). With all the diseases science has investigated, it is rather precipitous to suggest abstinence or more, eugenics (which an earlier post mentioned). eugenics is actually the later Victorian science of positive, selective breeding and not the negative connotation suggested by these post(s).

  16. My father-in-law just died of this terrible disease. I appreciate the NYT's coverage and devotion to this topic, as the articles are very informative and help with understanding. Keep at it NYT's.

  17. Best advice comes from family members in New York.

    " Fuhget about it!"

  18. It's really misleading to say "Alzheimer's gene" because all humans have a copy of that gene in their genome. However, it's when this copy is mutated, subjects display an Alzheimer's phenotype or symptoms. Therefore, it's more accurate (and appropriate) to say the allele that causes Alzheimer's. That is, the inherited form of the gene that arose by mutation. Thus the title should read: "How Do You Live Knowing You Might Have the Alzheimer's Allele."

  19. My grandfather's family had 13 siblings. Of the 5 who survived until the 1980's, 4 developed Alzheimers. I talked to a cousin about this at a family reunion, and we hoped to find a study to enroll them in before they died, or preserve tissue for brain autopsies. We never discovered one.

    What was odd about the sibling group - although there was a large range of ages in the group, with the youngest nearly 20 years younger than the eldest - was that they developed Alzheimers around the same time. I don't remember the exact dates, but they all became afflicted in the same 3 - 4 year range. So rather than showing symptoms at age 60 over a staggered range of dates, for example, they all showed symptoms around approximately 1978.

    The family - except for the youngest (in her mid 90's now and still unaffected) member - had endured Spanish Influenza, and I wondered whether that had some bearing on their later illnesses and deaths. They also lived in an area known for heavy industrial pollution.

    No one in the subsequent generation whom I know is currently affected, although it's a very large group of cousins, so I could be wrong.

  20. My dad had flu in the 1918 epidemic and died at 89 sharp as a tack. He told me he missed entire year first grade because he was so ill. Not that that proves anything but thought you might be interested. He traveled, did carpentry, much more right up to few months before he died. When he found out he was full of cancer he sat in a chair and died few months later. Hope I'm that lucky.

  21. Mt. Sinai medical hospital in Manhattan had an ongoing study of family members, who appeared to have propensity for dementia/Alzheimer. I am not certain if the study is ongoing, but I would guess that it is.

  22. That is so interesting. It sounds as if possibly the flu and/or the environment, maybe in interaction with some genetic thing, left behind a brain-destroying factor that went into operation at a certain number of years post the flu episode.

    I hope someone in research about these conditions takes note of your information. And then I wonder if you or anyone is sure that it was in fact Alzheimer's disease per se, rather than another irreversible cause of dementia, that took these people.

  23. My wife's father died from complications of Alzheimer's 20 years ago, in his late 60's, after suffering the disease for over 10 years. Her mother died from complications of 'dementia', last year at age 86, after suffering the disease for at least 5 years. We follow this research avidly, as one might imagine. And we do crosswords and sudokus every morning, in the hope that exercise might at least slow down the ravaging beast that may -- or may not -- lurk inside her head.

  24. Sitting here, knowing that I'm healthy, it's easy for me to say this, but I'll say it anyway: How can you not want to know if you have the gene that causes Alzheimer's? As scary as it is, I'd want to know, so I can plan for me and my family. And maybe even make the most of the years I have left. But I guess you think differently when you're in the situation. I really hope they find drugs that can at least slow down the degeneration. On another note, excellent article, NYT. Very informative!

  25. Because if there's no treatment and no cure, there's no way you can escape a dismal fate. Not everyone is eager to plan for their future life in a nursing home, drooling while they soil their diapers. Some people would rather live out their remaining healthy years believing they might not have inherited the gene.

  26. I know the following questions are outside the scope of this story, but still, I wondered: Did Gary retain his religious faith after giving up on his plan to become a minister? Did the awful disease at the center of his family's life make it difficult to sustain faith in the supernatural?

  27. Of my father's seven siblings, one died from pancreatic cancer, another died in her sleep. ALL of the others, including him, died of Alzheimer's. He lived the longest. After seeing his siblings fall ill, he became a health nut. He walked at least two miles a day. He became a vegan. He took supplements. He did memory tests. He also wrote books for a hobby. Long story short, he was diagnosed at 75, had to go into a nursing home, then died within a year.

    After all the time I spent on the Alzheimer's ward, I can at least say that once you've got it, you don't know you have it. The residents were well cared for and happy.

  28. I'm curious about the average age of onset of alzheimer's for your father's siblings and if he developed AD at a later age.

    Could the lifestyle changes have delayed onset even it was eventually inevitable?

  29. One aunt got it in her 50s, the others in their mid 60s. He was diagnosed at 75, when he could no longer take care of himself. He probably had symptoms earlier, but he managed on his own. His mother lived to 90, sharp as a tack. His father died at 59 of heart disease.

    He was on his health regimen in the '90s. He died in 2001. Now, I read so many articles that say diet, exercise, and mentally challenging activities may delay the disease. He was on to something.

  30. Actually the study of genes is limited in usefulness. In the 80s a researcher met the mother of a Muscular Dystrophy patient at an airport. Her son was in a wheel chair & would die in his late teens. The researcher ran to her & said "good news we have isolated the gene that causes duchennne muscular dystrophy!" (It's on the x chromosome.) Her response: "How does this help my son?" His answer was dead silence. The fact is no one has ever "fixed" a gene after discovering it is "broken". That is the holy grail: gene repair. The rest is interesting but so far it is not useful. Call us when you can fix the anomaly you have found rather that just point at it & say there it is. If your oncologist finds your brain tumor with a scan and then shows it to you saying, "there it is", but we can't operate & you will die soon. Are you going to celebrate? I hope this family finds answers it will help everyone. But focus people!

  31. Not really true Donna. Once the genes that trigger a disease are fully located, then it is a matter of looking at the _process_ of the disease and discovering medications that hinder that process. Yes we cannot turn a gene "off" but that's not really the point.

    Locating those DNS markers are step one and a very important step indeed.

  32. Of course you make a good point, but genetic counseling is also available in preventing future cases..
    It could be useful to know how significant your chances are of passing on this disease to offspring.

  33. The article points out that 99% of all Alzheimer cases are not from a genetic mutation, but by isolating and working with those with the known defective gene which produces the symptoms, scientists can find a cure as they did with statins for high cholesterol.

  34. I ask myself why the humans in the west are so deeath denying. Do you think you will all live forever? Humans are bound to death the minute the sperm meets the egg in the woman's womb; some live longer than others, but we will all take our last breaths sooner or later.

    Alzheimers/dementia has been part and parcel of human existence most likely since the first human walked on this earth. The condition was spoken of in the 7th century in Arabia as Gibril (Gabriel) gave the following information to the prophhet Mohammed (pbuh)> Please read the following translation of a verse (ayat) from th eQur'an.

    Al Hadj/The Pilgimage:

    http://www.muslimaccess.com/quraan/arabic/022.asp

    Ayat 5 drom Surah 22:

    22:5 O mankind! if ye have a doubt about the Resurrection, (consider) that We created you out of dust, then out of sperm, then out of a leech-like clot, then out of a morsel of flesh, partly formed and partly unformed, in order that We may manifest (our power) to you; and We cause whom We will to rest in the wombs for an appointed term, then do We bring you out as babes, then (foster you) that ye may reach your age of full strength; and some of you are called to die, and some are sent back to the feeblest old age, so that they know nothing after having known (much), and (further), thou seest the earth barren and lifeless, but when We pour down rain on it, it is stirred (to life), it swells, and it puts forth every kind of beautiful growth (in pairs).

    .

  35. I don't think that the fear of developing Alzheimer's is a fear of death, as you express. It's a fear of living in a state of increasing decay. For those who suffer from the disease and those who have to witness their suffering, death would be a welcome escape.

  36. I think the fear in the case of Alzheimer's, is NOT dying. Living inside an empty shell is worse.

  37. The discussion of dementia should always point out that there are many causes, some of which occur early ("pre-senile" dementias, i.e. classical Alzheimer's dementia) and others which occur later ("senile" dementias, i.e. microangiopathic dementias). These are a broad spectrum of disorders; clumping them together is a result of our lack of knowledge about the underlying etiologies. Over time, these should be sorted out by further scientific research.

  38. Two years ago the Mayo clinic released a study showing a direct tie between endothelial nitric oxide and Alzheimer’s. Essentially, nitric oxide protects the endothelium (thin layer of cells that protects the interior of all blood vessels.) The food we eat plays a major role in the health of that lining.

    Mayo Clinic

    “If you look at any risk factor for cardiovascular disease – the standard risk factors like high cholesterol, diabetes, hypertension, smoking, sedentary lifestyle, aging – all of these have been associated with loss of nitric oxide in the endothelium (the linings of blood vessels), a condition known as endothelial dysfunction.” -Zvonimir S. Katusic, M.D., Ph.D., senior author and professor at the Mayo Clinic.

    • As Dr. Caldwell Esselstyn (www.heartattackproof.com has shown with hundreds of heart disease patients, you can preserve or repair your blood vessel walls by eating a plant-based diet that’s high in the building blocks of nitric oxide: leafy greens, legumes, oats & beans.

    • According to Esselstyn’s research, just 3-4 weeks on a plant-based diet that’s high in greens, without meat, dairy, added fat or oil, is all it takes to start the healing process in (coronary) blood vessels, and put the nitric oxide factory back into business. Let’s hope it’s true for the blood vessels in the brain, as well.”

    Full post: http://wholefed.org/2012/05/16/dont-forget-plant-based-diet-prevents-alz...

    Ian Welch

    www.wholefed.org

  39. We are hopefully not slaves to our genes. The above are wonderful preventative measures. Krill oil, ginko biloba, and more. Let's avoid processed foods to boost our whole system.

  40. Thank you NYT! I have been diagnosed as having a Mild Cognitive Impairment (MCI). 80% of patients with MCI develop Alzheimer's within 10 years at the rate of 10-15% a year. I have written a memoir about my diagnosis and my reactions to it. Although I have published two academic books, no one (publishers or agents) seems to want to touch this one. I understand this; we fear dementia far more than we fear death. No one wants to face that. There is no treatment for what I have so I appreciate whatever publicity this horrid disease gets. The more people that know about it, the more research funding that will be available.
    Edwin Farrell

  41. My mother has Alzheimer's and my father's mother died of Alzheimer's- I have it on both sides of my family. Am I scared? Yes. I'm in my 30's and I hope in twenty years we have preventative medicine or a cure.

    In the meantime, I am using my brain as much as I can- I start grad school at Harvard in the fall.

  42. Keep the updates/articles regarding Alzhiemer's Disease research coming. Thank you.

  43. With just the photo to go from is there any connection between the Alzheimer's gene and male pattern baldness?

  44. Ronald Reagan had Alzheimer's and he had no male pattern baldness.

  45. Male pattern baldness is X-linked trait, so it is on a different gene from that which causes early Alzheimer's. Therefore, no connection.

  46. My grandmother died from this horrible disease. Her father also died from it altho it was never officially diagnosed in the 40's. But the symptoms were the same. Of the 7 siblings who survived to adulthood, 4 developed the disease. Out of the 9 cousins 4 had the disease. Luckily, my father was one of the ones who escaped. As my brother and I approach the age at which so many of our older relatives started showing symptoms, we wonder. Are we still in danger? We are both vigilent about looking for the early signs.

    The worst part of losing someone from Alzheimers, is that you lose them twice. Once when their memories fade away and then again when their body finally goes. It was so heartbreaking seeing my grandmother lose herself.

    I pray that they are able to find the right medications that will help people avoid this catastrophic disease.

  47. My mother died of Alzheimer's in 2007 at age 63. She first developed symptoms in her late 40s. I just turned 40, so I worry about every little thing I forget. What she went through was so horrible that thought of this disease looming in my future is a hard thing to live with. This study does give me hope though. I'll be anxious to learn the results.

  48. I was bothered by the commenter who suggested that 'everyone dies' from something. While that is true, if this person had ever cared for a loved one with Alzheimer's, I think his/her statement might be modified - who knows.

    My mother's family has a long history of dying from ALZ. My Mom, my aunt and both of my maternal parents had the disease. I would not wish it on anyone.

    While I do not wonder or commiserate about whether or not I have a genetic disposition, it does cross my mind on occasion but it does not make me live life any differently.

    I am just praying that researchers soon find a cause and a cure. Otherwise, there will not be enough beds in nursing facilities to house all of us boomers who develop this horrific affliction.

  49. This was a very informative but sad article. I am glad to read about the research being done having once worked in the area. What many people do not understand is that there is no quick fix for most diseases like this. There are many variables and controlling for them can be a difficult task. That said, this form of Alzheimer's may follow the pattern of inheritance many of learned of in grade school in terms of a dominant gene.

    I would think it's a terrible feeling to know that one is going to die an early death from Alzheimer's. On the other hand we all die at some point. One can decide not to have children and to try and plan for the future in terms of money and durable power of attorney, etc. I suppose that after that one goes out and lives the best life possible. Isn't that what all of us try to do even when we don't have a disease such as Alzheimer's in our future?

  50. My mother had it in her 60's and passed away before 70. My eldest sister had it in her 50's an passed away before 60. My oldest brother had it at 65 and passed away before 70. My brother is who is 2 years older than me, now has it and is alive with drugs and family care. My older sister at 70 is showing first signs of dementia. I am 64 and worried. I went through a battery of cognitive and memory tests with no signs as yet. I retired early at age 62 to reduce stress on myself. Only preventive measures I was told was physical exercise and varied colored foods. I run regularly, and eat lots of greens, fruits and nuts. I would be happy to be part of any study that didn't involve drugs.

  51. I suggest lots of READING AND CROSS WORD PUZZLES. Best preventive measure ever for brain protection. (Google Nun's Alzheimer's Study). Best luck.

  52. Jaque, for your Mother, sister, and brother who all died within 5-10 years of being diagnosed, were they diagnosed early or was it definite late stage when they found the disease? I know for my Mom, when she was diagnosed in January, and started her 2 medications, they mentioned it was a 12 year life span that we were looking at. I have yet to find out if that 12 years is from the first signs, or from when it can be diagnosed. I realize its not an exact science, but I am one to assume that it doesnt go from having slight memory issues, to forgetting where you live overnight...though I may be wrong.

  53. Twenty years ago I did a thorough search of my roots, collecting a stack of death certificates dating from the late 19th century. I found seven who died of dementia on my father's side; mother's side is clean. It was called senility in the early 1900s. One says malaise. My brother died four years ago of dementia. Of course many died in their 50s and 60s before dementia could appear. I'm now entering into the early stages. As Shakespeare wrote, "Death, the necessary end, will come when it will come." And, "Cowards die many deaths, the brave die but once." Let's be brave.

  54. Im, yes, let's! I have something - it is not Alzheimer's but most possibly one of the dementias. I'm 60, and things came to a tipping point about 2 years ago, but looking back, there were symptoms as early as 45. I can only take it one day at a time and enjoy today the best I can as fully as possible.

  55. Great article- Gina Kolata is a wonderful scientific journalist.
    I watched my mother in her early 80's suffer and die of Alzheimer's Disease. It saddened me then that she did not recognisize me, even when I told her who I was. Her mother- and her mother's two sisters were also diagnosed with the disease. Their bodies, like what happened to Ronald Reagan, lived on for many years. But inside they had left long ago.

    As a molecular biologist, I appreciate how Gina Kolata wrote the article, showing that finding the genes responsible for Alzheimer's is a key step towards developing effective therapeutics. I will be watching the results of the studies she mentioned with great interest.

    Whether I have good or bad Alzheimer's-related genes remains to be seen. I'm hoping I have just enough Irish luck from my mother- and that I have enough time.

  56. For one, you get a one of cheap commercial DNA tests and know for sure whether you have a gene or not. They cost ~$200 and give you a ton of other data too.

  57. I find it interesting that Doug, the Navy guy, is 65, has the gene and does not show any symptoms even though this brand of the disease is early onset. We KNOW that higher education and complex tasks train the brain to create more circuitry which allows for better resilience to the disease, EVEN AFTER DISEASE ONSET (please Google Nuns' Alzheimer's Study) Perhaps, his specialized military training has given his brain a defense against the disease. Nevertheless, another advantage of a more complex education/career: delaying dementia. I'll take it.

  58. Vanine, I completely agree with you. If your mind is an active one that is constantly challenged, I feel that even if early onset genes are present, you are less likely to exhibit symptoms of the disease. My mother, 64, was diagnosed in January for Early Stage Alzheimers. I am unclear as to what "stage" she is in, and we have yet to find out how rapid the disease will progress with her. She is on Aricept and Namenda at this time. She is a Special Ed Teachers Aide who has always been less intellectual than my father, and has taken a backseat her entire life to decision making, etc. I fear that her lack of challenging her mind, keeping active, and forcing to engage the brain will contribute to a more rapid decline. I guess time will tell. I feel that modern medicine should definitely be used, and explored, however essential oils and natural remedies should never be dismissed.

  59. Margaret Thatcher and Ronald Reagan both developed Alzheimer's.
    My mother worked very challenging crosswords almost every day of
    her life and was very good at them and read constantly.

    She also took ibuprofen for back pain.

    So much for intellectual stimulation preventing Alzheimer's. I would
    think running large complex countries for years would be intellectually
    stimulating???

  60. I wonder if proteins in our food could be altered by microwaving or other processing. Remember that mad-cow disease causes the brain to become a mess and is caused by consuming prions, unusual proteins.

  61. All cooking alters proteins in the sense that heat denatures protein. There exists no evidence that microwaves - which merely act by heating the water molecules in food - bear any relationship to disease.

  62. What about before the days of microwaving? People still got the disease.

  63. My mother in law was diagnosed with mild cognitive impairment about five years ago, after colleagues started noticing that she was forgetful and exhibited poor decisionmaking. Although she shared that initial diagnosis with us, she has refused to provide us with any information since then. Her short-term memory has eroded almost completely, she has become financially irresponsible, and we fear that she is experiencing some incontinence. We don't know whether she has Alzheimer's Disease or not at this point, or perhaps another type of dementia.

    I understand the philosophical stance many other commenters appear to display regarding death and dying. Watching someone struggle with dementia, however - and at a time when she still possesses enough self-awareness to likely be terrified by the changes in her memory and abilities - I must say that it is not death I fear, but a life afflicted with an inexorable loss of brain function. Watching her deteriorate during the past decade, I now wonder every time I pause to find the right word, or struggle to recall a long-distant memory. Will I go the same way? Will my husband?

  64. A good article, which quietly makes the case for participating in these studies as a way to lead us to a future where there may be treatments that actually work to prevent the deterioration in Alzheimers - and perhaps clues to other forms of dementia. As someone else noted above, this also suggests that the way to treating other "mental" illnesses is also through such research in the brain, genetic and cell level changes.
    And while we all have to face different assaults, there is something particularly terrifying about facing losing your ability to comprehend your world in middle age : the opening paragraph describing a picture of "the elders ... ranging in age from 29 to 52" is chilling.

  65. Thank you for sharing your excellent and thoughtful comments. My paternal grandmother, father's sister and likely, my father developed Alzheimers. In my father's case, though he certainly had developed dementia, he had other health issues as well and was, unfortunately, never definitively diagnosed with Alzheimers. I wish my family had been more open to postmortem testing but even in the absence of that and given his family's history, he likely did suffer from this cruel disease.
    I do wonder about the genetics from time to time, I don't dwell on it. Mostly, I feel sad knowing the burden that will fall on my two children, should I be one of the unlucky ones.

  66. Excellent article, Ms. Kolata! This is great science reporting.

    When I think back to all of my close relatives (e.g. sister-in-law) and friends, who had a parent diagnosed with Alzheimer's, the one thing that I am shocked to remember is how quickly so many of them died from the onset-diagnosis-confirmation of the disease. This article provides important context for all of this. And, it reminds me, that they live on in our memories of them.

  67. I would want to know if I had a family history of any disease. Fortunately, the genes on both sides are good. Most life into their 80s or 90s and then have strokes. All but one kept mental facilities. And that one only after a stroke at 89 yoa.

    Relatives by marriage have had the cancer genes. So I have cousins who have to worry about that.

    But there are so many environmentally caused diseases, and food caused diseases that we are all at risk. As long as you know you have a certain gene, you can eat and live to try to prevent disease.

    And there's always the 18 wheeler like the one that nearly totalled me in 1991. Totalled two of my dogs in my vehicle. and almost totalled me. Life should be lived each day as a gift. If diseases don't get you, something else will.

  68. Hmm, how come the article never mentioned Gary Landreth?

  69. Both of my parents have been diagnosed with Alzheimer's. My father was early onset.

    I spend many of my waking hours parsing my memory and trying to discern whether I'm starting to develop symptoms at age 48.

    I try to challenge my brain, eat healthy, etc., in an effort to stave off dementia.

    I'd love to know if I have the gene so then I could make plans for my future.

  70. I am 26, but I suspect I will have it given a family history. All I can say is that knowing is half the battle; and the longer you know you are gonna hvae it, the more likly that you remember you have it when you do. Cuts down lots on confusion. My grandmother began keeping notes so she could use them as reference to hide the fact that she had started showing symptoms. Sadly a stoke set her back further than she could continue to cover for.

  71. Eugenics, anyone?

  72. "The consent forms said all data would be kept private, and as is typical in research, even if a gene were found, the participants would not be told if they had it." Yet Gary purchased a readily available magazine, easily identified his family tree. By doing so, he determined he did not have the gene, but his brother did. Gary had no legal right to the information about his brother, and none of this information should be discovered while standing in magazine aisle. Is anyone at all concerned with the ethics of this?

  73. I, too, was puzzled and wondered if I had misunderstood something.

  74. Yes, this seems like a serious ethical problem for the study. Science is not really a magazine, but a professional scientific journal. But if the family member could figure out his own and his brother's status by looking at the family tree, clearly anyone who knew the family well could have done the same. And anyone who gets such news should have counseling, if they want it. So, it seems like a serious (unintentional) breach in the IRB approval for the study.

  75. Beth, Gary figured the info out by having participated in the survey and the composition of the siblings in the family tree and knowing that his siblings were already showing signs of the disease. It was a unique combination of info that only Gary or his immediate family would have been able to put together. Gary's brother had already tried to go out the window when he couldn't open the door. Gary did not receive information about his brother that he didn't already know.

  76. Several deadly diseases stalk my family tree, including dementia, heart disease, diabetes, two cancers and both my father & grandfather languished after suffering a hypoxia episode and languished until their dying days w/ diminished capacity. One of them, or at least a couple will get me, so I do my best to live a healthier & happier life, including being a better person.
    Can't live in fear, a car accident could finish me off tomorrow..
    Science hopefully will catch up to save people or mitigate the effects from these diseases; that's all you can ask...for now.

  77. I do worry some about Alzheimers. My grandma had it and her brain studied as it was something she wanted. I am 63 and have started to notice I say the wrong word,or,have a little trouble remembering a word right away. Little things like that. The other day though,I went to make stir fry and couldn't remember if I was supposed to make rice for it ?? It was weird but,I tend to take things in stride and not stress. My grandmother was very confused about her confusion at first...she thought she was going crazy and kept it to herself. I am a realist and try to read up and take steps to keep my brain as healthy as possible. So,the possibility I have the gene is out there. Or,I'll take after my Granpas' side of the family who tend to live 100+ ????

  78. Lana, these are signs of normal aging not pathology.

  79. Imagining a cure. My family, now gone, would be so happy to know the researchers are working at a terribly complex disease that slowly tortured them. The photo of the 14 siblings and what was to come after 1959, your family, my family. Researchers spend their lives trying to prevent and cure such human suffering. Bravo.

  80. Until my mother was diagnosed with Alzheimer's, I always thought our family's minds would be the last to go. But as time went on, I discovered that among my maternal great-grandparents' nine children, each had at least one child with Alzheimer's. Ours would be a good family to study. Naturally all the rest of us are scared to death. But isn't everybody?

  81. As has been noted, just because you have a genetic predisposition does not necessarily mean you will get the condition. In my generation, my cousin (my father's side) died of ALS, which is genetic. My son has MS, and my cousin's (my mother's side) daughter has MS, that's genetic, no other family history of MS or ALS at all. going back many generations and no other cases (so far) in the next generation. My father's generation with many cousins almost all the men smoked and those that did died of heart attacks in their 50's. No lung cancer. The women made it to 80's or 90's.
    Alzheimer's study: "the risk of getting the disease was 3.5 times greater among people whose blood folate levels were in the lowest one-third range and 4.5 times greater when blood homocysteine levels were in the highest one-third". Folate is in many vegetables, homocysteine is in animal foods. Page 221 of "The China Study" by Cornell prof. T. Colin Campbell who forcefully shows "the diseases of affluence" directly follow "The diet of affluence". Another example "Healthy at 100" where John Robbins reports in communities with 1% animal food have no dementia up into their 90's and 100's. Certainly something pro-active people with a genetic disposition could do for themselves. We're vegans for other health reasons, not a problem with the variety of foods and cookbooks available.

  82. In the meantime... make her happy. No medicine cures what happiness can not.
    GG Marquez.

  83. Read today with regret about the short life of Charles Beaumont, a talented writer of fantasy and science fiction whose work included many episodes of the Twilight Zone. He died in 1967 at age 38 after four years of declining mental ability, thought to be Alzheimer's.

  84. Good article with a human and historical as well as scientific angle.
    My family has shown late-onset paranoid delusions, maybe not as bad as schizophrenia, but still problematic. I'm waiting to see what goes with my son, as well as myself. Glad the story shows how people face whatever happens.

  85. My father died of Huntington's disease.

    I have lived with the knowledge he had it since I was 14, and I am 51 now.

    For years I tortured myself, watching every muscle twinge, and panicking.

    In the meantime, I became HIV+, so I added a worry about every bruise or skin eruption.

    I drove myself mad from fear.

    In the meantime, people I knew who always seemed perfectly healthy have died of heart attacks, cancer, and brain seizures. Others now suffer from crippling arthritis.

    The think you have to remember is that there are statistics, and there is you. Statistically you may be likely to get ill or not, but life, whatever you think, will not turn out the way you imagine.

    *So, try to live and enjoy your life*. If necessary do not have children to pass on a known condition. You are twinkle of consciousness in a huge otherwise meaningless universe. *Enjoy that*.

    Meanwhile, make very clear medical instructions so that you are not revived or operated on just to make you live and suffer longer.

    People my age face an enormous issue, never faced by humans before. We can be kept alive long after we should be living, and face a situation where if we do not give clear instructions relatives and institutions might keep us alive just to suffer. At all costs, avoid that.

  86. You live like everyone else , one day at a time. Make the most of every day you have.
    That´s all any of us can do.

  87. I can answer this headline question without the long paragraphs intended to evoke fear... Don't live your life worrying about tomorrow. It may never come. If the pattern of this disease is strongly familial, state your intentions in writing and forget about it. Live in the today. There are no crystal balls out there, although medicine prefers that we believe it. This is about profit, folks!

  88. Because their father has Alheimer's, should I email this article to my children?
    Damned if I do and damned if I don't.

  89. As always: another excellent bit of medical reporting by Ms Kolata. She always makes the complicated science of medicine understandable and informative. I want to thank her for her professional work before I forget who she is and what she did. Thank you, Ms. Kolata.

  90. Interesting article. I think it makes readers wonder what a burdensome health problem dementia can be for a society that is unequipped to deal with it. That is why we need to have more support groups, research, and educational initiatives for a devastating disease that eludes any cure.

  91. My husbands Mother died with this vile disease & he too has been diagnosed with dementia.
    I would however like to point out that there are seventy + variations of dementia of which Alzheimer's is only one and therefore is this article solely about ALZ or are the researchers looking into all the other variants.

  92. My mom died of stroke this past September after suffering with Alzheimer's for about 3 years. In retrospect, she'd had it before then but we chalked it up to her being dingy/ "Aunt Clara -ish" (from "Bewitched"). Clearly she'd been masking for awhile. She was 77 when she died. This disease hurts my heart, being the primary caretaker for her made me realize it truly does affect more than the person with the illness. Mom had 3 maternal aunts who had it too so at 53 I'm kinda concerned...

  93. I am reminded of the nuns' study where their brains were examined after death. One very vibrant elderly nun had the disease - the tangles showed up in the autopsy - but she never showed symptoms of disease while alive.

    I can't remember the name of the study or the book written about it, but you can probably google it. Very interesting reading.

  94. I was very impressed by the article, but when I saw that it was by Gina Kolata, I was no longer surprised. I would expect no less from the editor of the Best American Science Writing 2007 (which was one of the most engrossing editions published).

    Fantastic article on one of the most frightening diseases out there.

  95. Why are people with a known family history not using donor gametes (at least when the family history comes through the male partner's side)? I know that there has been a lot of flack recently from donor offspring regarding not knowing their roots, but these days most sperm banks offer willing-to-be-known donors, and reputable sperm banks do not accept donors with this sort of thing in their family tree (and it is my own personal opinion that a willing-to-be-known donor is going to be less likely to lie to a sperm bank because his future offspring would find out).

    Donor gametes are not that expensive (which I know from having one donor conceived child myself).

  96. So if an MRI can detect the decrease in the size of the hippocampus why is it
    not done on all us who had a parent and an aunt both get the disease? Some
    of my aunts and uncles died when they were in their fifties or sixties so we will
    never know if they would have become afflicted.

    I would like to know if I have Alzheimer's while I still have some control of
    my decision making. Perhaps some of us would not wish to spend our last
    years facing such a slow undignified death. Especially if are alone in the
    world and don't have a family member to care for us during our decline.

    I watched my mom die over eight years and it wasn't pretty.

  97. Dear Ms Kolata. I am a retired internist having practiced in Jonesboro, AR since 1968. My 3 son's live in Maine, Virginia, and Pascagoula , MS. My wife and I moved here from Harriman, TN with a stop in Memphis for Med School , Internship and Int Med. Res. Your article gets you an A+ in my grading of your understanding of people, families, and how relatives interact.
    Sincerely, Richard G. Burns, M.D.

  98. It is stupid to think of the gene carrying fear it may just not affect you during lifetime.
    Do not worry yourself sick lose sleep and give yourself insomnia, phobias of kinds or may be a hypertension or worse a heart attack if nothing else.
    Go to sleep and leave it to time to show symptoms to follow the track to mend the damage if any.

  99. Seems that I keep seeing studies showing that you can reduce your risk of Alzheimer's and dementia significantly, even if you have genes predisposing you to it, by eating a plant-based diet, which reduces systemic inflammation (among other things), which happens to be a big part of how these diseases develop. If you're looking for something concrete you can do to improve your chances, ESPECIALLY if you're at genetic risk, seems that would be a good way to go. Might help a lot and couldn't hurt.

  100. Hope, is the take away from this story.Alzheimer's may not be curable but soon hopefully we able to prevent or manage the symptoms. The more stories debunking myths about this disease helps everybody, realize we all know someone who has been afflicted with this destructive disease, which not only destroys the patients but their families too.