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  #1   ^
Old Tue, Jan-02-18, 17:47
costello22's Avatar
costello22 costello22 is offline
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Default Alzheimer's/dementia

Does anyone have experience with a ketogenic diet for dementia?

I put my mother on a ketogenic diet seven days ago. At least I hope she's in, or going into, ketosis. I haven't tested her blood or urine. The diet may be a bit heavy in protein, but apparently there are concerns about lower protein for an elderly person who spends most of her time lying down. I'm supplementing her diet with MCT oil to encourage the production of ketone bodies.

How soon can I expect to see improvement, if any? What kinds of improvement? How long will she continue to improve if she does at all?

My patience is in tatters. I'm on the verge of just giving up and put her in a nursing home. If anything, she's more irritating than she was before, but maybe that's a sign that she's improving? Or maybe it's just a sign that I'm wearing out.

One of her favorite statements is "I can't wake up." She says it several hundred times a day at two minute intervals. It's like a Chinese water torture. Not responding isn't an option, because she'll insist I say something back, although I have nothing to say to it. I'm not even sure what she means, since obviously she's awake when she says it.

Any thoughts? Or, even better, any personal experience with this?
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  #2   ^
Old Tue, Jan-02-18, 18:38
Sugar_Free's Avatar
Sugar_Free Sugar_Free is offline
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Plan: Carbs <30g/day
Stats: 131/127/125 Female 5'2"
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Location: Western U.S.
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Costello,

First I just wanted to say I have dealt with dementia and I understand how difficult it can be. If you're feeling overwhelmed I would recommend seeking support through your local agency on aging. This can go by different names depending on where you live. An in-person support group can be of great help, and you can also get a lot of assistance on whether to get in-home help or make the decision to move to assisted living.

One thing that helps to remember is that because of the dementia, the reality she is experiencing is different from yours, so for example, when she says, "I can't wake up," you could answer sympathetically, "I know," even if you can't really see what it is she's seeing. That might soothe her a little. If that makes sense.

Finally, regarding the ketogenic diet, I wanted to share the study I heard about today. It said that a diabetes drug had reversed memory loss in mice with Alzheimers. That makes me think that those who think blood sugar/diabetes and dementia are linked are on the right track. So I thought it might help you to hear that at least.

The study: https://www.sciencealert.com/diabet...ith-alzheimer-s

I hope that helps a little.

P.S. Editing to add: I just saw the study is being discussed over in LC Research/Media.

Last edited by Sugar_Free : Tue, Jan-02-18 at 19:03.
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  #3   ^
Old Tue, Jan-02-18, 22:42
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bevangel bevangel is offline
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Hi Costello,

I am way tooooo familiar with Alzheimer's. Been through it with both my mother-in-law and my stepmother. MIL died two years ago and SM is now in an Alzheimer's Care facility and likely will not live much longer. And, now my Dad is showing some signs of dementia although his doctor thinks his is due to occasional oxygen deprivation because of Dad's lung disease rather than to Alzheimer's.

I know exactly what you mean about dealing with repetitive conversational memes....drives you CRAZY! Like having one line of a song stuck in your head. It helped me some to realize that MIL and SM were NOT doing it deliberately just to drive me up the wall.

Alzheimer's patients seem to get "stuck" in a particular moment and loop round and round through it like that movie "Groundhog Day"... except that they literally have absolutely no recollection of having said exactly the same thing two minutes previously! Everybody ELSE in the "movie" suffers the repetitions while they themselves are blithely unaware.

I suspect your Mother's pet phrase is her way of saying that she is aware that something is not quite right with her, even though she can't explain what it is that is wrong. And, that is really sad when you think about it.

My MIL used to constantly say "I don't know what is wrong with me, up until 2 weeks ago, I had a GREAT memory but now I can't seem to remember anything." And she said it what seemed like 10,000 times every day for a couple of YEARS at least. Then, all of a sudden, she just completely stopped saying that phrase and we realized that she had deteriorated to the point where she no longer realized that anything was wrong with her.

Similarly, for years, SM's favorite phrase was "seems like I'm supposed to be doing something...?" spoken with a questioning lilt that made it clear that she was hoping somebody could/would remind her of what it was that she was "supposed" to be doing.

One thing I did was with both of them was, when I'd start feeling like I was ready to scream, I'd challenge MYSELF to find something new to say to every reiteration of their buzz phrases. That made it something of a game for me and I'd sometimes find myself actually waiting rather impatiently for the next repetition because I'd just thought of a really good reply and wanted to see how it would go over.

Second thing was that I started trying to make my responses something that suggested that MIL and SM go DO something. Eg, with SM I'd say something like "Yes, you're supposed to be helping me fold this big stack of laundry." or "I think you were going to sort through this pile of socks and match them up." "You said you were going to vacuum this afternoon." Getting them busy with some sort of task seemed to short-circuit the cycling, at least for as long as they could manage to stay busy on the task.

With your mother, you might try responses like "How about drinking a cup of coffee? that might help you wake up." or, "You probably just need to go wash your face." Or "I bet a nice walk around the yard would help" or, "well of course, you can't wake up! it's bedtime, go get you in your nightgown on"... whatever is appropriate to the time of day and what you would like for her to be doing other than driving YOU bananas!

Fortunately Dad has not started being repetitive. Instead he has some weird "echo effect" thing going on in his brain where he'll see something and have such an overwhelming sense of deja vu that he honestly thinks that same event has happened numerous times in the past. It seems to happen most often when we're out driving somewhere. Eg., we'll drive past someone getting a ticket and he'll say "I see that same guy in that beat up old chevy van getting a ticket every single time we drive by here." I used to argue with him that, as far as I could recall, he and I had never driven past this particular spot together before. Now I just say something like "yeah, you would THINK that guy would learn better than to speed."

The human brain is a weird, weird thing!

As for ketogenic diets, I had never heard of such a thing when dealing with MIL. But, it definitely helped with SM although, except for short periods of time, I was not in control of her diet. And now, when I can keep Dad from bingeing on carbs (he loves to bake) I think he is sharper and suffers fewer of the deja vu episodes.

How much a ketogenic diet will help seems to be highly individualized and probably depends, in part, on how far along the Alzheimer's has progressed when you start the diet. And since, as patients progress more deeply into the disease, they may actually become EASIER to care for because more amenable to suggestion and less agitated by their own knowledge of their disease, it is certainly possible that "improvement" for the patient may make it harder for the caregiver.

Whatever you do, don't beat yourself up for your FEELINGS. Dealing with Alzheimer's 24/7 is unbelievably difficult. It doesn't LOOK that hard to someone who only deals with the Alz patient for short periods of time, but the hour after hour after hour, day after day after day of being constantly "on alert" while dealing with the utterly mundane just wears you down mentally, physically and emotionally.

Make sure you get some help! Yes, having someone that you can talk to who "understands" is helpful. But in addition to an understanding ear, you NEED at least one full day per week (and I mean a full 24 hours) that you are NOT "on duty." And, if your Mother is a night-time wanderer (as more than half of Alz patients are) you NEED someone else to stay with y'all at night so that YOU can sleep uninterrupted. Do NOT break your own health while caring for your Mother.
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  #4   ^
Old Wed, Jan-03-18, 05:25
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bluesinger bluesinger is offline
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Bevangel, your post is amazingly thoughtful. So glad I wan't my father's caregiver while he was at his worst. That fell to my mother, who never complained.

They lived 8 miles out from the nearest small town and one day I found myself on the country road driving behind him. His pickup was going only 20 mph and he was totally unaware of where he was or what he was doing. That was the day I insisted she take away the keys and hide them, as well as his guns.

Of all my health nightmares, Alzheimer's is the worst.
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  #5   ^
Old Wed, Jan-03-18, 05:42
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JEY100 JEY100 is offline
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Plan: IF Fung/LC Westman/Primal
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I have dealt with Alzheimer’s in maternal grandmother, mother (not a good genetic hand on that side) and FIL. Back then we cared for them in the home until a nursing home was necessary for physical reasons. Our current Town provides a senior "day care" to give caregivers a break, and oodles of senior Services to help one find in home care or other options. If looking at assisted living, potential residents will be evaluated for different levels of care. We waited too long to get into entry level, had to move FIL into Memory Care unit without stopping at go. He was living at home with a caregiver, went into a rapid decline. The timing of the stages is not in her or your hands, it can be years or a psychotic break that happens in days. Sure you have heard of this classic...reading The 36 Hour Day may help you regain some perspective. Even better information already added by Bev!

I didn’t know about the Ketogenic Diet then, but two popular books now are Dales Bredesen, The End of Alzheimer’s (bestseller in Amazon still, was in Costco and library) and The Alzheimer’s Antidote by Amy Berger. (Not as well publicized, but she has great info on her website http://www.tuitnutrition.com/p/alzheimers_13.html and some good podcast interviews, check the one with Dr Perlmutter. Btw, Grain Brain is a $3.99 Kindle Deal Today...some related info in that book.
Many of us on this forum have been through what you are feeling now. We understand, we sympathize, and also wish for you that a change in diet will make some difference in the daily sadness and stress of this disease.

EDIT ADD: just received notice of a free docuseries with Dr Mark Hyman on The Broken Brain, starting Jan 17. https://brokenbrain.com/trailer/?oprid=2501

Last edited by JEY100 : Wed, Jan-03-18 at 07:06.
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  #6   ^
Old Wed, Jan-03-18, 10:19
costello22's Avatar
costello22 costello22 is offline
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Plan: VLC
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Thanks for all the kind words and advice. I'll check out those resources.

If I can hold onto my sanity, I'll try to let this experiment play out for 30 to 90 days and see if it helps. Of course, it may help in ways I'm not seeing because I'm not doing any formal tests to measure progress.

I'll have to get some test strips to check the ketone levels in her blood.

I'm sure as soon as I put her in a nursing home, she'll be back on a high sugar diet unfortunately.
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  #7   ^
Old Sat, Jan-13-18, 11:55
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teaser teaser is offline
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Plan: ketosis/IF
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https://newatlas.com/alzheimers-dru...ts-aging/52898/
I found this interesting not just from the longevity angle, but for the alzheimer's as a metabolic disease aspect.

Quote:
Alzheimer's is a devastating disease, and with the world's average population getting older, its effects will be felt further and wider in the future. A drug dubbed J147, developed by the Salk Institute, is one of the most promising candidates to treat Alzheimer's, but just how it worked at the molecular level remained a mystery. Now Salk scientists have figured out the mechanism behind it, which could see J147 used to fight other age-related conditions as well.

J147 was developed in 2011, and in early tests was found to enhance memory in both healthy mice and those with Alzheimer's, and also managed to protect the brain from further damage. A few years later, the drug was found to have wider anti-aging benefits too. But while tests showed that it was working, researchers weren't exactly sure how, and with the drug almost ready for human trials it was important to properly pin down that mechanism.

In a new study, a Salk team found that J147 binds to a protein called ATP synthase, which is responsible for producing a common cellular "energy currency" known as ATP. This protein is known to control aging in worms and flies, and the researchers found that by binding to it the drug was able to prevent age-related damage to the brain.

"We know that age is the single greatest contributing factor to Alzheimer's, so it is not surprising that we found a drug target that's also been implicated in aging," says Josh Goldberg, first author of the study.

Looking deeper, the team found that J147's interactions with ATP synthase affects the levels of ATP and other molecules, which works to make the mitochondria – the energy generators in cells – healthier and more stable. That in turn slows down and even reverses the effects of aging and the progression of disease.

"I was very surprised when we started doing experiments with how big of an effect we saw," says Dave Schubert, senior author of the study. "We can give this to old mice and it really elicits profound changes to make these mice look younger at a cellular and molecular level."

Those results mean that J147 is not only promising as an Alzheimer's drug, but could be useful for other diseases related to aging.

"People have always thought that you need separate drugs for Alzheimer's, Parkinson's and stroke," says Schubert. "But it may be that by targeting aging we can treat or slow down many pathological conditions that are old-age-associated."

The next step for the team is to study the other molecules besides ATP that are affected by J147, in the hopes of finding new drug targets. Meanwhile, the drug has passed the toxicology test in animals, and should move into phase 1 human clinical trials soon, pending further funding.

The research was published in the journal Aging Cell.
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  #8   ^
Old Tue, Jan-16-18, 08:41
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costello22 costello22 is offline
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Thanks, teaser.
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  #9   ^
Old Tue, Jan-16-18, 09:00
costello22's Avatar
costello22 costello22 is offline
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Plan: VLC
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I came back to make a brief report on mom - both as follow up for people who read this thread later and as a kind of record of where things stand for mom at this point.

It's been about three weeks. Mom is getting a high-fat, low-carb diet with maybe a bit too much protein to be highly ketogenic. I'm adding MCT oil to her protein drinks - a tablespoon per drink, so 3 to 5 T per day. It doesn't seem to have upset her stomach.

Her mental condition is not improved. If anything, she's worse. She formerly had at least an interest in what was on tv. Now she shows little interest in anything. She sleeps a lot.

There's a confounding factor. Her doctor had prescribed an antidepressant called mirtazapine to increase her appetite. I didn't give it to her, because she had another appetite-stimulant called megestrol which was working. Unfortunately her insurance won't pay for it, so I may have to discontinue it when her current supply runs out. So about six days ago I started the mirtazapine and gave it to her for three days. It was dreadful. She became even more confused and listless, and she slept nearly the whole day and night. She started saying she couldn't stand up to go to the bathroom. I discontinued the medication, and she's now a bit more alert.

I tried to research how long I should continue this experiment before I decide it's not going to be helpful for my mother. Since this isn't really a treatment that's widely used for dementia, I checked the experience for epilepsy. Evidently it can take up to three months to tell if it's going to help. I did find a case study with a patient with advanced Alzheimer's which noted he showed improvement after two and a half months.

So, I'll continue for two or three more months before abandoning the effort.
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