The Notebook was mentioned in today's blog. I hate to tell all of you who don't already know, but a notebook only works in the very early stages of the disease. In fact, it was the reality that a notebook WAS NOT WORKING that made the cognitive therapist positive that she wasn't dealing with normal strokes, but with full scale dementia.

Yes, he has a notebook. He actually writes down the day and date every morning from the newspaper we get delivered. As opposed to the 4 additional newspapers we buy every morning, by the way. But once it is written down, does he ever look at it if he wants to know what day of the week it is? No, he does not.

You can try to teach someone in the earliest stages of dementia strategies for word finding and list making, but they don't work if they can't remember to use the strategies. At the point my husband was diagnosed, the era of The Notebook was long gone.

Just one more thing to frustrate the living daylights out of someone.

i bought a whiteboard which sits over his chair in the kitchen, upon which I write the day and date. And I leave him notes if I'm out for any reason. Yesterday I was out with the dog, and he couldn't find me. i don't write it down , I figure if I am not there, the dog is not there and the door is ajar, he will know that I'm out with the dog. doesn't work though. he went to the kitchne to look for my note. Fortunately, I came right back, but the notes I leave are very important. I also bought a very large desk calandar for the wall, so he can look at it and see where we are going or what our plans are. (he never looks). The other day he was very angry with me because I never tell him anything, and that let me know that I must write everything down, regardless of the fact that I tell him verbally, because he won't remember. Its really not easy, but it is what it is.

My DH can read most of the time, but from the time he would read the blackboard until he returned to his recliner, he would have forgotten what he read! He has forgotten his days of the week now, so I just tell him when it is time for us to change before going somewhere that we are going. If I tell him in the morning that we are going out to dinner, as soon as I leave for work, he'll bathe, shave, dress and sit in his recliner waiting for me! Naturally, I only did that once!

His "Notebook" is the journal I wrote with our life stories, with all of our travels and places we lived and I included picutres of us at 2 years of age, our engagement pictures, wedding pictures, pictures of our children at 2, around 10, around 16 and grown, a couple of pictures of our last three years of trips, and our grandchildren and great-grandchildren. This journal is in a three ring binder with protected sheets for the pages. He looks at it every few days that I know of. Even with the book, he doesn't know my name or that I'm his wife, but while he is looking at the book, maybe his long term memory will recall his life for him.

My sister had brain surgery in the early 90s. They showed her a bunch of strategies so she could go back to living a normal life. She REFUSED to try any of them.

With dementia it is different. Dementia patients really can't learn anything new. But my sister was in a stroke-like situation. There was no disease making her sicker every day. She just plain would not accept the idea that she needed to make up shopping lists, or use a calendar to remember doctor's appointments, or a notebook, or a drug organizer. In short she wouldn't do the things I've done every day since I was 15 or 16 and discovered that they existed. I literally used the notebook system when I was an executive secretary and office manager as a matter of course.

It is true she had NEVER used any of those things before, but I think it might also be true that there had been just enough damage that she was probably in stage 2 or 3 vascular dementia although that was never diagnosed as far as I know. Maybe she didn't learn because she couldn't learn.

My husband picked up the word finding card from his therapy days yesterday, looked at it and put it right back. Would he still be talking more or less normally if he had been willing to use it? I have no idea.

And those of us who do use calendars, notebooks, and drug organizers, just how long will we be able to hide our own dementia?

I have to consider the possibility. One of the downsides of finally finding my extended family was discovering how many of my mother's cousins had dementia. They were all very old, in their 90s. It existed on both sides of her family. Her father's first cousin had it. On her mother's side of the family there are cousins with multiple lines of contact and it is there too. I never managed to "find" my father's side of the family, so I don't know what is going on there.

Yes, I do the puzzles daily (I actually love them), and use calendars and other devices. I don't have an active notebook right now, but if it becomes something to use, I will use it. Etc., etc., etc. And I fully intend to "hide" it as long as possible. <grin>

Starling, it sounds as if the genes you might expect to inherit from your mother's sides are those associated with longevity, not disease ... the risk for anyone to get AD goes up dramatically as they get older. 10% of those over age 65 have AD, and the number climbs to 50% of those over 85 years old.

Familial AD, or early-onset AD (EOAD) can be inherited. Late-onset ("normal") AD does not show any obvious inheritance pattern. There are some genetic factors that appear to play a role (that is, they are considered risk factors), but genetic risk factors alone are not enough to cause the late-onset form of AD. That's why you hear so much about other factors that may or may not be linked to AD (fat tummies, copper pans, you name it) ... because so much research is being done to try to figure out the role that education, diet and environment may have in triggering AD.

So if you don't like the idea of turning 90, then my condolences about your genes. Otherwise, I think you have much more important things to worry about.

There appear to be a number of genes loosely associated with AD. Genes can do more than one thing -- a single gene can be involved in many different biological pathways. Also, when one pathway is blocked or damaged, there are often "backup" pathways that kick in, so that overall damage or disease is not actually seen. So with something like AD, there may be many different triggers, any one of which cause the onset of disease, or there may be clusters of triggers that are required -- and any of a bunch of different clusters could set it off.

As we finally begin to unravel all of the different biomolecules involved in the different pathways, and learn more about the chemistries, we may even discover that AD is NOT a single disease, but a whole family of diseases.

Mary, high levels of copper (and some other metals) have been tentatively linked to AD, which led to worries about how people might get exposed to too much copper ... through drinking water, cooking food in pans with copper parts, etc. So big hoo-hah about getting rid of metal cookware. Not sure where that stands right now -- I do know that they have found biological pathways that may play a role in AD that are affected by copper ions, but I don't know whether an actual causative relationship has been established or disproved since then.

My DH has always been one to write notes, and keep a calandar. In the past, I would look at his pocket calandar to see what was goign on. As he came down with AD, those little aids he used just went away. It's like the bills, now he has no interest in the bills, i took them over last year. Interestingly, he was writing his memoirs, and was religious about it. then he totally lost interest. Now he has become interested again, but not in writing them, in reading them. he cannot believe he remembered all that he wrote since he doesn't remember any of those things now. The last few days, especially yesterday, he just slept all day. was totally uninterested in doing anything. Andf then was crying because he is so useless, and is always so tired. There seems to have been a big change just recently. he insists that he's already taken his meds, and doesn't want to take them again. maybe one of those organizers would help. I almost feel that he doesn't trust me to give him what he's supposed to get. last night I told him, If you don't want to take them, don't. it's not a problem. I'm thinking that the drugs don't seem to be helping that much anymore, but I am scared to death to stop. I just don't know what would happen if I stopped. he's got no appitite and has lost 30 lbs over all in the last 2 years. Funny, doctors seem to think that's a good thing, Yes, he could afford to lose the weight, but, not this way.

About eight years ago, for her eightieth birthday, a good friend was given a "word processor" to type up her memoirs, which included losing her mother when she was two, a childhood in Germany during WWII, then a successful life and career as an educator in New York, a naturalist on a Maine island in the summer, marriage to an unpleasant artist,traveler, etc. I worked with her to publish it so her friends could read it and so she would have that satisfaction. Made sure we put in a lot of pictures from her albums. BY the time it was finished and published, it was obvious that she was becoming senile. We managed to have one summer on the island where she sold her book, attended book signings, etc. She was in her glory! That fall she moved into assisted living (she had no family), broke her hip a few months later, had serious setbacks after the surgery/anesthesia, and now lives in a nursing home, happy to see visitors. She does not recognize anyone.

But her book goes with her everywhere! She says she is so grateful for it because "it gave me my life back" and she still reads it, or looks at it daily.

I would encourage everyone to try to put together some sort of a narrative of your patient's life for them. If you have a computer-internet literate relative, it's very cheap and easy, about $30, to create a hard-cover book of pictures and narration, that will withstand all kinds of abuse. Paperbacks are even easier.

I'm now working on one for my husband, who's at about the stage my Helga friend was a couple of years ago.

=Briegull