I invite you to check the home page - www.thealzheimerspouse.com - and read the weekend blog about ANOTHER study telling us how we can prevent Alzheimer's Disease. Someone who shares my opinion on these studies wrote a letter to the editor expressing her concern. Please check out the blog and letter, and post your opinions here.
By all accounts I should have had AD, not my DH who was so busy mentally & physically all the time. I can be a happy couch potato on occasion. In 1906 Dr. Alzheimer examined the brain of a woman who had the same bizarre behaviors that our LO's have today. Nothing has changed--nothing. She, of course, wasn't the only one. Facilities were filled with others, just as they are today, or they were kept hidden away in attics, whatever. It is well past time to recognize that Alzheimer's is just a politically correct nice way of saying someone is losing their mind, going crazy, insane. It has been around for centuries, it has nothing--absolutely nothing--to do with our modern society. It is not caused by aluminum, electrical wires, fluoride or dental fillings. It has nothing, absolutely nothing, to do with crossword puzzles, mental stimulation or physical activity and, absolutely, absolutely, nothing to do with education or lack of it--I don't care what the nuns did. I don't think my DH was the exception, I think he is typical of AD sufferers. Just no known reason why. Of course, there is a reason, we just don't know what it is yet, but it's not lack of vitamins or curry--and, yes, Indians get AD, it's just vastly underreported. If you go to the home page of this web site, in the left-hand column you will see a link to my web site--or go to: GEOCITIES.COM/CAREGIVING4ALZ.
I invite you to click on 'You're in Good Company' and read those who are known to have AD. There is a plethora of actors and mental stimulation, memorization is their stock in trade. So knock it off with that stuff. Over and over I read that you all say what I said: How could this happen to such an intelligent, active person like my LO? No one ever says my DH was a lazy bum, my DW spent all day watching soap operas.
My own layman's guess is that it's a recessive gene in our DNA and for whatever reason, diminished blood flow to the brain may play a part. But what causes it--much less what PREVENTS it is not yet known. Wish it was, but it isn't and there can be study after study after study of nuns, twins, twinkletoes or whatever, it's not life style, and you can take that to the bank.
I think that dementia is such a scary proposition that people want to be reassured by all these studies. They can then think that this will never happen—to them—because they would certainly never do…….. well, whatever it is that the study says not to do. This is another example of the “blame the victim” mentality. Surely the person who has dementia must have done something to cause this. I’ve even had people ask me what caused my husband to have dementia! I should have told them that the medical community all over the world is working on that very question, and I’ll get back to them when they let me know.
Agreed! It's in the category of people want to do SOMETHING to avoid getting it. Like taking unproven meds to help whatever physical ailments they have.
I do not see or comprehend how or why we are told how to keep from getting Alzhemers Disease when the researchers still don't know why some people get it and others don't. If we don't know what causes the diseasae then how on earth do we keep from getting it. The variables that they cite in perhaps acquiring dementia are not the attributes of my husband. He was a well educated man, intellliegent, very athletic, in excellent health, who kept up with current events, read vorociously, and did most of what the pundits advocate to keep from the disease. I am so tired of hearing the various activities that will keep one from dementia......Let me hear some posiitve research for a change, of ways to regain memory and cognitive thinking.
All these test to determine how to prevent Alz. are a farce. They often boil down to a use it or lose it philosophy. Yet, many people wil grasp at the results of these studies out of fear that they will develop the disease.
What are truly more beneficial are the studies attempting to find out what precisely happens in the brain that makes Alzheimers and the other dementias. When we know what happens and why it happens, we'll be able to develop real treatments and even preventions. Until then we are limited to using whatever we've found, that at least eases symptoms, or perhaps seems to help slow progression.
The brain is very like a computer and when well made can run complex programs and store prodigeous amounts of information for instant retrieval. But it, like mechanical computers is vulnerable to breakdown--causes including viruses(illness), broken wiring(circulatory and/or neurological damage), etc. caused by genetic and environmental influences being responsible. And there may be other factors at play in such breakdowns as well.
Until we know the sources for Alz, there can be no preventions. Studies to determine preventions are a waste. Promotion of "findings" from such studies are another way to prey on the fearful, no different than the old medicine man's "Elixir" to cure 100 and 1 things that afflict us.
AD seems to run in my DH's family. His father, uncle and first-cousin have all died from AD. It's quite possible that his grandfather also had AD. There are stories (heresay) of other members having AD as well.
Somewhere along line, our daughter decided that she is safe because it appears to be gender specific. I don't know enough to argue with her about this supposition. She also told me that all four of our sons and 3 grown grandsons are all very concerned that they will get the disease.
I think one reason for giving all these instructions to follow (i.e., Mediterrean diet, fish oil, lots of exercise, etc.) is so the person can follow these instructions and feel good that they are doing something concrete to prevent AD.
I hate to disappoint your daughter, but my DH has it and his mother had it, and his aunt had it and who knows who else might have gotten it if they had lived long enough. Our grandparents often died earlier than we do know, so in your case, the women who might have gotten it might not have lived long enough. Of course I'm talking about AD and not EOAD. Lets face reality, we are all at risk, and no amount of crossword puzzles will prevent it.
Also, hate to disappoint your daughter, however, before any problems started my husband got into his head that since he was male, dementia would stop with his mother. Well, it didn't stop, came sooner for him at 53 years old ,maybe sooner.
*sigh.............. Ditto to everything you have all said. Another thing these false headlines do is feed the ignorance associated with Alzheimer's, It just burns me up. I can't tell you how many people brought us crossword puzzles when Lynn was in the earlier stages! Crazy!! I can't imagine why educated people insist on spreading this garbage. They should be focusing the time energy and money they use on these ridiculous studies and instead look for the WHYs and cures of AD, only then can there be any form of true prevention.
If articles like this upset you, don't read them. They're written by reporters who are not trained scientists, don't understand fine (or not so fine) distinctions or subtle nuances, and are looking for a quick sound bite that will grab attention.
In my opinion, this is a justifiable reason to shoot the messenger, since the messenger is screwing up the message. But it's not a good reason to rip into the researchers.
In this particular instance, the researchers chose twins in which one member of the pair developed AD and the other did not OR the AD appeared at different ages. They did NOT include all twins in the database, which I found quite curious. The abstract says that greater midlife cognitive activity was associated with a 26% risk reduction for dementia onset. The link was stronger for twins who carry the infamous APOE-ε4 mutation, providing a 30% risk reduction. (By the way, there was an earlier study on women twins which produced the same basic findings.)
Most of the scientists trying to identify environmental risk factors have the sense to emphasize to reporters that they've only identified a link between the environmental factor and the likelihood of developing AD. They note that a CAUSAL relationship has NOT been established.
The abstract from the "twins" study doesn't emphasize this ... but the full paper might. And quite possibly, the authors assumed people would understand that a study design like theirs couldn't possibly show cause and effect. Most people in the field would.
For example, the link they found could just as easily mean that people with a temperament that causes them to be laid-back, friendly, and very social are less likely to develop AD. Many scientists believe prolonged severe stress can trigger (cause) AD.
I've fired off an email to request a copy of the full paper from Dr Carlson. I'd like to see what they really did say. This is the first study I've seen that put social interaction into a stronger "protective" category than cognitive activity. Interesting.
Studies such as this are not a waste of time and money. It is extremely difficult to determine what is going on at the molecular level in a disease as complicated as AD. Studies such as the "twin" studies are attempting to identify patterns that may give us clues as to what to look for. For example, Dr Carlson noted that the "protective" factors identified in her "twin" study might be indicative of an enriched environment, which has been shown in animal models to enhance the creation of new brain cells and promote brain repair.
So we fuss and fume that crossword puzzles don't protect against AD, that many of our spouses had jobs that required a lot of intellectual activity, had tons of friends, engaged in all sorts of hobbies, and STILL developed dementia. Well, it sounded to me as if a lot of our spouses are extremely driven people. Perhaps stress can overpower weaker "protective" factors, hmmm?
And how many other factors might have affected whether and when AD struck our loved ones? Bacterial and viral infections, high blood pressure, high cholesterol, smoking, diabetes, surgeries (especially bypass), exposure to chemicals, head injuries, sleep apnea, alcohol consumption, cardiovascular disease, obesity, exercise, dental disease, early-life nutritional deficiencies, depression ... education, intelligence, occupation ... not to mention genetic factors such as the infamous APOE-ε4 gene mutation AND whether the person has protective genes such as APOE-ε2.
carewife, with regard to your statement, "let me hear some positive research for a change, of ways to regain memory and cognitive thinking." Actually, there's a lot of that going on. For example, the data from the "twin" study might be helpful in identifying rehabilitation/intervention techniques that promote brain repair.
I found an intriguing article that said that with all we've discovered recently about ways to treat AD, one might expect the field to have been "revolutionized". Instead, it's just the same old same-old. So I've been looking into the various rehabilitation and intervention techniques that are being studied. Naturally, most of them are more beneficial for patients with MCI or early-stage AD, so until you start getting a lot of patients diagnosed very early in the disease, these treatments won't gain widespread use. But I think perhaps the main reason the field hasn't been revolutionized is that rehabilitation/intervention isn't nearly as easy as dashing off a prescription. It takes time, and qualified therapists, and caregivers willing to invest a lot of time and energy. How do we go about pulling all that together, PLUS get the information into the hands of the primary care physician???
While poking around into the "twin" study, I found a very interesting abstract in "Alzheimer's & Dementia". It pointed out that AD is a "multifactorial phenomenon" -- that is, that many different factors determine whether and when AD will develop. The authors believe we will be more likely to succeed in preventive trials if we build a strategy using ALL the potential protective factors that have been identified to have the most potential effect, rather than trying to find a simple and unique intervention. Some experts believe that this could have a much bigger impact than all the drugs we might ever hope to develop. The main objective of the paper is to present the rationale for multi-domain preventive approaches. I've sent a request for the full version of this paper, too.
I'm trying to learn enough to determine whether there are any such techniques I can use with my husband -- his AD might be too far along, but then again, he was extremely intelligent, and he has actually been developing some techniques to help himself.
I'm also trying to figure out if there's some way I might help the revolution get going.
As for cognitive therapy, I really believe that if we had gotten my husband to the therapist a year or two earlier that he would have been able to use some of her strategies. They wouldn't have stopped the progression of the disease, but they would have made those two or three years more productive and improved quality of life.
There is also something else. My husband still copies down the day and date from the newspaper to a notebook. It is the only piece of the strategies she tried to teach him that he still uses. He doesn't look at what he wrote to see what the date is. He doesn't write down what happened that day that was interesting or different.
BUT, he can still sign his name. He can't write a sentence, but he can still sign his name, and frankly at early stage 6 he should not be able to do that. Maybe if she had seen him a year or two earlier she could have helped hold off the progression so it wouldn't be quite as fast. Maybe, with an early stage of this group of diseases, some rehab is worth doing, for the same reason we give them the dementia drugs to slow things down.
The disease is still terminal and as far as we can tell the drugs don't change the amount of time it takes to die. But quality of life is sometimes better on the drugs than it would be off them.
Sunshyne: You make very good points, those I could understand anyway. When this all began w/DH, in about 1994, I was in a support group of mostly wives--usually 12-15 people. One session I asked everyone to tell what their husbands were like before AD. I was trying to see if there was a common thread. My DH was a workaholic, could not get him to back down no matter how I tried. He seemed to thrive under stress. He was goal-oriented and just slashed his way thru lions & tigers & bears that may be in his way. I had little ambition, but I also reached my goals by skipping around the lions, etc. I always felt his self-imposed stress had a lot to do with it and that could also lead to diminished cerebral blood flow. I believe CBF has something to do with it, but don't know which came first. Also I think it may often have more than one causing factor, but again, I have no idea what many of them might be.
The husbands in the group were almost all different. Some were heavy drinkers, some physically active w/tennis, golf, others were into weekly poker games & all that goes with that. Some were softies, family men, others were mean as junk yard dogs. Some, as often noted, were very intellectual, had technical jobs, makes one wonder if too much brainiac stuff can lead to it.
I think we get annoyed with studies being done over and over and people who mean well, read them and give us magazines or tickets to something our LO cannot follow. It is 'blame the victim' and the 'dumb, uninformed CG' --show them how easy it is to get it turned around. People telling you what they found on the computer--as if we hadn't researched it hour after hour. After years of being buoyed up about this new finding and that--then being let down again and again, you can't help but lash back.
I always enjoy your posts and the details of your views even tho much of it is above me. Thanx for all of that.
The chicken or the egg. This has been bothering me for quite a while. My husband would rage while on the phone for hours. The poor soul on the receiving end would hang up and he would call back, get a different person and continue the rage. It got to the point that I would leave the house fully expecting to find him slumped over after a stroke. I could hear him yelling through a closed front door. I think it is possible that these rages caused some brain damage leading to FTD. Any thoughts?
Oh, bluedaze, how did you live with that? This was before you could blame it on the disease. Oh my! You would think that could really cause a stroke or heart attack so maybe it did do something to his brain.
My DH has always been sweet, considerate of others and a very "tame" person. Don't know what could have done something to his brain.
bluedaze, My husband was the most calm, mild mannered man on the planet, which is one of the things that attracted me to him. I don't think the rages caused anything, I think whatever happened to him caused the change in personality. I am taken aback with each outburst.
Bettyhere, I understand where the backlash comes from, yes indeedy!!! My sister, bless her heart, sends me all sorts of "helpful" articles. So far, I have managed to thank her graciously. I know she really does mean well, and it hurts her to know what my husband is going through. But still... And I do get thoroughly irritated at the "news" reporters. If they could just get things straight ONCE, it would be nice!!!
Bluedaze, it could have been something as simple as your husband getting a cold sore many years ago that started the whole thing off...
Sunshyne, if she really is trying to help, tell her his disease has gone beyond that kind of thing helping so she will stop. I got some puzzle gifting as well, but once they realized that those things no longer helped it did stop.
The funny thing is that at stage 2 and 3 I bet it does help. But I don't know anyone who gets diagnosed at stage 2 or 3.
People are starting to get diagnosed with MCI... that would be stage 2 or 3. (The question is, how do they recognize enough of a problem to haul the LO to the doctor???)
I think the people who get diagnosed with MCI might have had a stroke or other event.
I may be the only one here who has experience with their LO going to a stroke rehab center for cognitive therapy. I really think that if he had been just a bit earlier in the progression it would have helped for a while, mainly because some of it DID help for a while. Personally, I think caregivers who's LOs are diagnosed with MCI ought to try therapy. Anything to slow the progression down a bit.