How does it work?

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Good for you, Oldestof3, for having the wisdom to take that med away from your loved one! Our doctor had my husband (who also has dementia) on Namenda for quite a while, and I noticed that he seemed more confused than ever. I took it away, and in a couple of days he was nowhere near as confused. I experimented this way two more times, and I finally withdrew it forever. My doctor is aware of it, but she is very understanding and she never argues with me. She respects my decisions. She is very easy to talk to. Anyway, we caregivers need to be ever mindful that the pharmaceutical fat cats will ply us with as much medication as they can and that we are willing to pay for. I am in charge of my husband, and only I know how he is doing on a day-to-day basis. I am the only one fully qualified to know what is best for him. He now has a "house call" doctor who comes in every couple of months to check up on him and whose visits are covered by our health insurance. If any of you don't exactly look forward to dragging your loved one to his/her doctor, please get yourselves a "house call" doctor. They have been available for years. What a great convenience!
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I have never heard of it but I can see compliance would be extremely difficult for someone with dementia or even the caregiver trying to deal with it. Good luck!
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Well, you'd likely find a better explanation going to the Axona website, but I did read up on it when the doctor wanted Dad to try it. So here's the way I understand it, (Some of this background info is what I remember from years ago when I was in anatomy class.) :

All cells of the body need energy to function. The energy comes from the food you eat, which is always broken down into useable forms. The carbohydrates you eat break down eventually into glucose Glucose is the simplest, easiest , thus first line choice of your cells for energy; and is the brains prime source . Inside all cells are several inclusions, among which are the mitochondria. It is the mitochondria's job to take that glucose and change it further into a form that the brain then uses for energy to function.

Your cells also have the ability to use ketones for energy, but you won't likely have lots of ketones floating around in your system unless you are fasting or are diabetic and having trouble producing insulin. Insulin being the vehicle by which glucose enters the cells. Without enough glucose (whether because of lack of food or lack of insulin) a body compensates by burning more fats, which breakdown into ketones. So you see, the body, especially the brain can use the ketones for energy when it needs to.

Fast forward now to a brain with Alzheimer's. In the Alzheimer's brain the cell's mitochondria lose their ability to convert glucose into that useable energy. (I don't think scientists actually know why yet). So the premise behind the use of Axona is that if the brain can't use glucose well enough, then we need to give it more of what it can use, which is the ketones. (And since you are not in fact low on glucose, your body is not going to make them for you.)

So you see, Axona is essentially a food containing ketones , which the brain cells will be able to use. It seems to make sense that if you provide the brain with energy that it can use, then it will be able to function again.

Axona comes in a powder form that you mix with milk or soft food. The patient starts out slowly, increasing the amount each day over a week. (Need to start slow because it can cause upset stomach/loose stools) They also must take it on a full stomach, about 20 minutes after eating a larger meal. Also they must drink it slowly over 15 to 30 minutes.

We got the starter kit, and I tried to help Dad take it. But his dementia had progressed to such a level that he was so overwhelmed by all the rules for taking it. He used to get terribly anxious any time we'd change anything. He was still living at home at the time, and even when I offered to drive there everyday to mix the powder for him it just didn't work. He wasn't eating any big meals, and refused to drink it after he ate, because he wasn't hungry. And he refused to eat on a schedule, or even when I put out the food. So if I drove over and he didn't want to eat then, I could not stay to make him drink it after he ate. If I mixed it and left it on the table for him to have after the meal, it would just sit there till I came the next day, and threw it out.

So it just didn't work for Dad.. So I can't say if the medication would have done him any good. I'll be interested in reading other poster's reports about it.
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Mom took it for awhile and at first I thought it helped. I thought it helped with her anxiety but the dr. didn't think it would help with that. It was suppose to help with her memory but the instructions were too hard for her to handle....or me to handle.....she had to wait 30 min. after a meal and then take another 20-30 min. to drink it slowly and Mom's motto is 'get it over with' and she drank it down fast complaining her stomach was already full from lunch. Finally, she began to complain of nausea and I stopped it.
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