I know we have talked about this before, but I can't locate the thread so I started a new one.
One of the things that drives all of us caregivers crazy is the idea that you can stop dementia from happening or turn it about with mind games and physical activity. We all know that is nonsense.
But I am beginning to wonder if the games and physical activity might not just slow things down in the early stages of the disease. Can it keep you at Stage 2 or Stage 3 longer. I know that the strategies that the cognitive therapist was trying to teach my husband works on stroke patients. Would they also work on early stage dementia patients? Definately the time comes when the notebook just does not work. Maybe that is one of the big signals that dementia is no longer at an early stage. Maybe the notebooks and calendars stop working when dementia gets to the middle stages?
If your LO has been diagnosed with something other than MCI at what stage did it happen? My husband was definately at least at early stage 5. And by that point the puzzles, games, notebooks and calendars no longer work.
Among other possible reasons they may or may not work, it seems that all of the recommended mental stimulus exercises involve things that are specifically the things he cannot do. Use a computer, fill out a graph/grid (crosswords,) etc.
We played Scrabble. Then we played Scrabble without keeping score since I was always winning. Then we played Scrabble without caring if the spelling was correct. There is no way we could play now - somewhere late stage 4 or early stage 5 is my guess. There comes a time when none of this is helpful...
My friend Helga, who used to be a dynamite scrabble player, could play well into Stage 5, I would say. My husband, who never was a game or puzzle person but who COULD use a computer gradually got worse and worse with it; the decline in his logical powers to figure out how to do something when he had a problem was one of the first things I noticed. Anything with numbers, grids, etc, seems to frustrate him especially. One of the first things to go is the ability to deal with numbers - why is that so important in those brain exercises? And many older people have problems with hearing - so why all that posit science attention to sounds?
I swear. I think we should set up a questionnaire that each of us could fill out identifying all of the things we've noticed that no one seems to - like those damned toothpicks!! And then go shove it in some researcher's face!! We are each doing essentially field research on a subject, in a way that researchers can't afford to do.
A few months ago I bought a "Find a Word" puzzle book for my DH. I wasn't sure he would use it because he has never been interested in games of any kind. He has used it everyday and enjoyed it. On Friday he said he was getting tired of so I suggested he leave it for a while. Yesterday he didn't even look at it so I wonder if he is having a harder time finding the words and his Az is progressing. Another thought, are we delaying the inevitable and should we... when we try to get them to use their memory more?
I don't think we should try to push them (they probably won't let us anyhow) but sometimes providing some stimulus will change their mood for the better. Distraction, diversion. Think back to child rearing. Stop the tantrum by washing hands, or diverting with a new toy.
My DH was never very good at math. Now it is very strange, but he seemed to be retaining his math skills and he plays games on the computer while losing so many other skills. He can still count money and add. However, just this week I did catch him adding some simple figures wrong two different times so this may be the beginning of his decline in math skills.
briegull, I posted earlier about child rearing but it hasn't shown up. Here goes again! i never had children so I don't have any experience with tantrums etc. Which is why this disease scares the hell out of me. Will I be able to handle all that is to come. I hope and pray I can.
The paper by Jennifer Ghent-Fuller talked about a method for helping dementia patients "learn."
"The ability of people with Alzheimer Disease to establish new memories is being actively researched at present. Cameron Camp and his associates at the Menorah Park Centre in Ohio have developed a method they call “Spaced Retrieval”, which allows someone to help a person with Alzheimer disease develop new habits. This method consists of taking a simple one-step task and working with the person with Alzheimer Disease to practice it (retrieve the memory repeatedly over spaced amounts of time). The practice sessions are kept positive, with no pointing-out of mistakes, but giving the correct information each time (termed “error free”). Paradoxically, people are able to develop new habits, such as using a walker correctly, but they do not remember being taught. This valuable new method is starting to make a difference to the daily lives of many people with early or middle stage Alzheimer Disease. It is quite evident to those who work in long-term care settings, that people with dementia are able to get accustomed to new procedures. Spaced Retrieval is a training process that allows others to formally access the retained ability of people with dementia to have new procedural learning. (www.myersresearch.org)
The paper was written in 2003, but I just took a quick look, and the www.myersresearch.org link is still active. Haven't had a chance to read it to see what it says, yet.
Sure, I guess if you don't have anything else to do you could spend time breaking tasks down into one-step retrievals, have practice sessions and never point out mistakes (yeah, right) keep it 'error free,' etc. (while keeping your cool) teaching your LO how to develop new habits--oh, wait, right, they can't learn new things!
The point is that, with the right kind of help, people with mild or moderate AD CAN learn new habits (re-learn how to do what they used to be able to do).
Provided that you have the time to help them learn. Which, as we all know, is a teeny-tiny bit of a problem.
Sometimes parents are the absolutly wrong person to teach a child how to do something. Think of all the kids who should never be taught to drive by their parents, for example. <grin>
Sometimes the main caregiver, spouse or child, should not be the person to teach their LO how to brush their teeth when they have given it up. But how do you find someone who's job it will be to teach that one particular thing, and then go home? Since it is the ability to go home that makes it possible to stay calm while the teaching is going on.
As for is it a good idea to try to keep the LO at an earlier stage than they would normally be for a longer period of time? I think yes. In the end it will be physical things that will bring on the end-stage of the disease. I don't think a puzzle, or interest, or a medication can change the time frame from now to the end, but it is possible that those things can make the patient more comfortable and happier during the long slide down, and maybe change what the slide looks like.
DH used to do the crosswords daily also all the various word games in the newspapers, he was an avid scrabbler he read the newspaper daily from cover to cover.He played cribbge,solitaire,poker, blackjack at the casinos. The first significant loss was his language.Next came decision making, logic,concepts ie politics, currency, stock market, income tax,investments and pension plans.He can count backward by 7s like 1 2 3 he can still play solitaire on the computer and until a couple months ago could play cribbage but could not remember his color of pegs or his turn.He has no short term memory and his language continues to deteriorate.Sooo the puzzels and games didn't seem to help.His basic math skills were always excellent and he continues to retain them It certainly causes confusion on the tests.Jean, I don't have children.I have a really difficult time with the tantrums but I think everyone has.They are devestating.Dh had an early diagnosis. That was 7 years ago and we're now in stage 5/6 and its progressing more rapidly now.
I have to weigh in on this one because it drives me crazy when study after study after study says that if you keep your mind active, you can ward off or significantly delay AD. I've mentioned this before, but I can't find the thread either, and I think it bears repeating - Was Judge John O'Conner's (Justice Sandra Day O'Connor's husband) mind INACTIVE before AD? Was Dr. Richard Taylor's ("Alzheimer's From the Inside Out") mind INACTIVE before AD? Was Charleton Heston's (regardless of whether or not you agree with his politics) mind INACTIVE before AD? Were the minds of your spouses who were lawyers, pilots, engineers, professors, INACTIVE before AD? I think not. If you are going to get it, you are going to get it, and all the crossword puzzles in the world are not going to stop it.
The advantage to continually learning and keeping an active mind BEFORE AD strikes is that if it does strike, you will have a lot of what is called "cognitive reserve", meaning that your higher level of intellectual functioning will allow you to "mask" your symptoms longer than someone with less "cognitive reserve", and it will allow you to draw on strategies to compensate for your failing abilities.
Also, AD is different in everyone. In my husband's case, he quickly lost his weakest cognitive abilities (comprehension and expression of language), and kept his strongest cognitive abilities (visual-spatial memory, math ability -which the experts say is the first to go - not in his case).
If you missed it, click on the "previous blog" section of the website -www.thealzheimerspouse.com- , and scroll down to Blog #182- Doomed to Develop AD, and read my humorous take on all the conflicting advice about warding off AD.
Some of you might want to go to my web site www.geocities.com/caregiving4alz and click on "You're in Good Company." There are dozens of AD sufferers there (and some of their LO's). You may not recognize them all, but they are people of consequence who led public active lives. Especially note the actors. Their stock-in-trade is to use their memories. What more can you ask a person to do? Creative writers, composers, dancers, athletes, politicians, military, on and on. Including my husband who was just damn brilliant, healthy, active--all the right things. I should have been the one w/AD. High blood pressure, sedentary nature, all the wrong things--except I did do crosswords & he never did. I'm sorry, but I've yet to hear of anything that will work over the long haul, and until I do, I'm just not buying.
Joan, I don't think any of those people had inactive minds. My only question was is it possible that they stayed in early stage dementia longer because their minds were active? Was the course of the disease different because they had active minds? Did the curve look different?
It is obvious to any of us that once the dementia reached a certain point that they could no longer do the puzzles or use the notebook.
I doubt if keeping an active mind and/or body wards dementia off. But I wonder if it makes what the disease looks like different.
As I mentioned above, having had an active mind makes it easier for the person to hide their symptoms and to utilize strategies to compensate for their deficiencies for a longer period of time than someone who has little or no "cognitive reserve." So in that sense, the disease looks different, i.e. the person looks and acts more "normal" for a longer period of time to those who don't live with them.
At one of the conferences I attended, I learned that an area of research that is being studied is concentrating on trying to diagnose MCI as early as possible and treat it, thus delaying the onset of AD for 3, 5, or more years. The thinking is that if they delay it long enough, the person will be so old when they finally get AD, they'll die of old age before their AD symptoms interfere with their quality of life.
Yeah, that sounds like what I mean. I also think it just might be what the cognitive therapist is doing with her stroke victims. Trying to give them enough strategies that they can live a more normal life even though some of the brain has died. With a disease that isn't progressive that stuff works. Or at least works longer than with real dementias.
I would also think that if you can stay in stage 3 for an extra 5 to 10 years you have to be better off than if you progress into stage 5 more quickly.
Back when I was living in Boston, childhood leukemia was a death sentence ALWAYS. They tried everything they could come up with to keep the kids alive as long as they could, and quite suddenly in the middle 60s realized that they had one young man in remission for more than 5 years, with a whole group behind him. He actually was a young man of about 16 or 17 at that point. They had figured out that if they could keep them alive until they entered their teens, their bodies would fight off the cancer. He went into remission at 11 or 12.
If there are people out there trying to keep people in the early stages of the disease, no matter how they do it, there is the possibility that something similar could happen with dementia. Right now that is what the dementia drugs do. They keep people in the earlier stages of the disease, just slowing it down. Doesn't work all that well, but better than nothing at this point. 10 years from now they might have better drugs. 10 years from now they might have better ways to diagnose so they can get people on the drugs earlier.
Meanwhile I'm doing puzzles and keeping my mind busy so I stay in the early stages just in case. <grin> And I enjoy the puzzles.
No, there is no way to stop the disease, any varient of it. That wasn't what I was suggesting. Frankly, my daughter gave my husband puzzles for Christmas. We put them on his computer and it was obvious it was way too late for them to do any good. Within a month or two, he had also given up the computer.
Keeping your mind active certainly will not keep the disease from happening. Nor will it turn you around once you have the disease. The only thing I'm suggesting is that if you are at Stage 3, it just might keep you at Stage 3 for a few more years.
Same thing with the notebooks and calendars. My husband was diagnosed because it was already too late for notebooks and calendars. But if it isn't too late, I bet strategies like notebooks and calendars keep the quality of life steady for a while longer than if you don't have them.
I always was uncomfortable with the "use it or lose it". It's like blaming the victim. When I was diagnosed with breast cancer at an early age someone actually blamed me for eating a diet too high in fat (I weighed 110#). My DH played tennis, swam and biked daily. He taught CPR to the people taking care of him only one year later. He regularly beat me at playing cards and the two of us did the crossword puzzles together daily. It's those little things that I miss the most.
I agree with how you feel about use it or lose it, yet it is also true that my husband was the kind of man who had a job and no other interests in life. A high powered job that definitely used his mind, but still a job.
So your husband is a perfect example of someone who was using it, and lost it anyway. And mine is a perfect example of someone who might just have gone downhill a lot faster than he might have because he literally had no interests in life. On the other hand he was doing extensive amounts of exercise at the gym right up to January 2008.
The only thing I would wonder is just how much longer did you have the joy of those daily crossword puzzles than you might have if he hadn't had outside interests.
The problem with this set of diseases is that we don't know the answers to these questions.
I fully agree that blaming the victim is not the way to go. I had acne from the age of 10 until I was in my 40s. I still don't know why it didn't wait for menopause to go away, but it didn't. Honestly, I WAS washing my face, and they say now that my love of chocolate didn't give me acne. And we know now that your breast cancer had nothing to do with diet.
I suppose I am still hoping that keeping an active mind and body helps...maybe it just helps ME to see him doing something. Now his main force is doing jigsaws on the computer...which I set up for him..normal computer use is fairly well gone as are other electronic and mechanical things (Is anyone interested in figuring our our sprinkling system developed, designed and installed by my DH?..Now that is a lot of fun...poor gone greenery). But, he does seem to enjoy the puzzles still. His older brother just left after a brief visit. He gave him a copy of The Economist to read...hello??? Think he has a clue what is going on? Actually, sort of humorous.