Ketones

[Alex McDonald]

Does anybody have any information or thoughts on the effects of diet on the symptoms of dementia? I am aware of some advice that a high fat/low carb diet could be beneficial as it encourages the body to utilise fat and this in turn produces ketones, but this as not been proved scientifically, although some research is due for publication.
Are there any particular foods that have been show to have a beneficial effect?

 

[jenniferpa]

Not that I'm aware of. But your best bet is not this forum but to search through some of the medical publication sites. Medscape is pretty good. You have to register but you don't have to pay.

 

[Kevinl]

Hi Alex, welcome to TP
There's a list of foods, diets and supplements that people believe help, but unless you have a clone of someone it's really impossible to tell. No two people with AZ progress at the same rate and "dementia" is an umbrella term for a whole host of different conditions some of which can only be specifically confirmed after death.
There are people out there who make no specific claim for their product but use fake "satisfied customers" to make the claim on their behalf, that way they can never be made to prove a claim they're not actually making.
Claims are made that turmeric and coconut oil are both beneficially to someone with AZ but you can find as many places say they do as say they don't.
Problem with a high fat low carb diet is that you'll probably die of a heart attack before you get AZ if the doctor's are to be believed.
After someone is diagnosed with AZ it's frankly a bit of a lottery it can happen when you're quite young, my wife was 55 when she was diagnosed or quite late in life, my mother was diagnosed at 85. my wife's progression was much slower than my mum's yet they both lived in the same house and eat the same food.
You might be able to prove people who eat a healthy diet live longer, but then equally people who eat healthier tend to be richer and more health aware/conscious in the first place so that's more likely to be a contributing factor.
There some research that someone with AZ can be treated with a ketogenic diet, because people with AZ have a problem metabolising glucose and so a diet rich in medium chain triglycerides will convert into ketones despite the glucose levels.
If you google " beta-hydroxybutyrate " and it's "effects on the brain" or "ketogenic diet" there is quite a bit on the subject out discussing the way ketones work in relation to the glucose in the brain.
It's something that's never come up with any medical professionals I've ever met but at a research level quite a bit of work has been done.
K

 

[philamillan]

I have spent some time looking at the benefits of the ketogenic diet in dementia. This has to be a full ketogenic diet with very limited carbohydrates. Similar to what is used in Pediatric Epilepsy.

Firstly, it would be very difficult to implement in a person with dementia as it is already hard to feed them even the foods that they like.
Taking oral ketones will probably not work if they are also eating normally as the principle of the ketogenic diet is to force the liver to make ketone bodies because of limited availability of carbohydrates.

Secondly, the current research seems to suggest that while there may be some benefit to the ketogenic diet initially it is not sustained in the long term
My suspicion is that the primary problem of impaired glucose usage in the brain eventually overcomes the benefit of ketones.

Thirdly, I would encourage you to continue with your thoughts as it is only through trial and error that we may stumble on a benefit.

In my humble opinion, in 1905 Auguste Deter was identified with the pathological changes of Alzheimer's dementia and she was an unusual presentation at that time. Our statistics indicate that the worldwide prevalence is over 47 million. In 112 years!!

Therefore this must be an environmental disease, which if we try hard enough can possibly be reversed.

 

[trismes]

Alex, with diet yes we had great success.

I don't think the forum rules allow me to say much less it's construed as advice, but effectively following a diet focusing on gut heath worked a treat. there's plenty of material out there and books on it.

Keto diets are slightly different, and my main concern would be how tough it is if someone's not used to it at a late age in life.

Most of the diet studies in relation to Alzheimer's are pretty poor tbh or they look at a single food rather than the diet as a whole.

good luck

 

[cragmaid]

Any food is better than no food.

Phil briefly touched on this point, but I would reinforce it soundly..... sometimes ( usually at some point) it is impossible to get any patient to eat anything approaching a good diet, let alone a medically sound one.... If you can sort that out first, you will be very popular.

 

[trismes]

Phil briefly touched on this point, but I would reinforce it soundly..... sometimes ( usually at some point) it is impossible to get any patient to eat anything approaching a good diet, let alone a medically sound one.... If you can sort that out first, you will be very popular.

It's not impossible, just takes a lot of preparation but I'm guessing a lot depends on how advanced the dementia is. In our case it was early stages so entirely doable.

We got as many people involved as possible - his GP (thankfully just a safety precaution as he was pretty disinterested), a qualified dietician plus the host of other advice from professionals in the field. Not only that - and this is quite harsh - we spelt out the alternative future if he didn't follow it of care homes, memory loss, lack of connections etc.

Once all the pressure was on, first month diet was handled by my mum before we then got him to take ownership of it.

A few lapses here and there, and it has required keeping the pressure on every now and then, but in general it's been solid.

It is 100% worth doing.

 

[LadyA]

It's not impossible, just takes a lot of preparation but I'm guessing a lot depends on how advanced the dementia is. In our case it was early stages so entirely doable.

We got as many people involved as possible - his GP (thankfully just a safety precaution as he was pretty disinterested), a qualified dietician plus the host of other advice from professionals in the field. Not only that - and this is quite harsh - we spelt out the alternative future if he didn't follow it of care homes, memory loss, lack of connections etc.

Once all the pressure was on, first month diet was handled by my mum before we then got him to take ownership of it.

A few lapses here and there, and it has required keeping the pressure on every now and then, but in general it's been solid.

It is 100% worth doing.

trismes,
I'm sorry if I sound harsh, but to me this reads as if you are saying that if other carers made more of an effort, they could get the person they are caring for to eat a healthy diet, and that the person with dementia would understand if the "alternative future" were spelt out to them.

Dementia is a very individual illness. My husband, for example, had been in the "natural health" field for many years and had qualifications in herbalism, naturopathy and other complementary therapies. For several years, he travelled, lecturing in diet and health, and the use of herbs and natural remedies. He was a very firm believer in the "Mediterranean Diet", healthy oils, etc. etc. And in the very early stages of his illness, he did indeed do a lot of research and stick to an excellent diet and recommended supplements.

However, as his dementia progressed (and progress it did, relentlessly and in a particularly horrific way) his tastes changed totally. He refused to eat the foods he used to love. The olives, hummus, olive oil, and all the vegetables & salads. All he wanted was, to be honest, ice cream and bananas! And occasionally, sandwiches. His beloved sweet potatoes were suddenly spat out. I found food hidden all over the place! Under tables, under shelves, in bookshelves!! Getting him to drink was a constant battle. I have him a fresh glass of different drinks at least every half hour. He would take a couple of small sips and then leave it. So, eventually, he did end up in a Nursing Home. Not because I or he "failed" in any way following some diet or getting him to eat properly. It was because he had dementia, and it eventually took an aggressive turn. He needed 24 hour care. And actually, as it turned out, he did much better in the nursing home, he even ate better.

Occasionally, someone will find an approach that will work in their case. But dementia is something that as yet, does not have an approach that works for everyone.

 

[trismes]

trismes,
I'm sorry if I sound harsh, but to me this reads as if you are saying that if other carers made more of an effort, they could get the person they are caring for to eat a healthy diet, and that the person with dementia would understand if the "alternative future" were spelt out to them.

Dementia is a very individual illness. My husband, for example, had been in the "natural health" field for many years and had qualifications in herbalism, naturopathy and other complementary therapies. For several years, he travelled, lecturing in diet and health, and the use of herbs and natural remedies. He was a very firm believer in the "Mediterranean Diet", healthy oils, etc. etc. And in the very early stages of his illness, he did indeed do a lot of research and stick to an excellent diet and recommended supplements.

However, as his dementia progressed (and progress it did, relentlessly and in a particularly horrific way) his tastes changed totally. He refused to eat the foods he used to love. The olives, hummus, olive oil, and all the vegetables & salads. All he wanted was, to be honest, ice cream and bananas! And occasionally, sandwiches. His beloved sweet potatoes were suddenly spat out. I found food hidden all over the place! Under tables, under shelves, in bookshelves!! Getting him to drink was a constant battle. I have him a fresh glass of different drinks at least every half hour. He would take a couple of small sips and then leave it. So, eventually, he did end up in a Nursing Home. Not because I or he "failed" in any way following some diet or getting him to eat properly. It was because he had dementia, and it eventually took an aggressive turn. He needed 24 hour care. And actually, as it turned out, he did much better in the nursing home, he even ate better.

Occasionally, someone will find an approach that will work in their case. But dementia is something that as yet, does not have an approach that works for everyone.

Hi there - sorry that's not what I meant to say at all! It was just because someone said it was impossible, I chimed in; my dad is early stage, so in our case it has been relatively straightforward. In no way do I want to suggest that anyone else who struggles is an absence of care, of course everyone's experience will vary. And it sounds like you really have been through the wringer in spite of your every best effort. I am sorry for your loss, and I'll try to be a bit more careful wording my way in future.

The dietary stuff we've done isn't simple healthy eating per se so I would hazard a guess not many people have tried it. It may help other dementia patients, it may not, but that's something I intend to find out over time.

Noone is to blame for progression of dementia, not you or anyone else. I actually think it's way harder for the carer than it is for the patient, because it's a constant thankless task that gets harder as it progresses from what I can see.

However, something is. The rates of dementia are so wildly different even across western countries - why's Finland got a rate 16 times higher than Poland for example? that's what I'm keen to explore.

Thanks for sharing your experience.

 

[love.dad.but..]

I hope your dads illness doesn't progress into moderate or advanced stage as my dad and most do and will, leading to end of life. Atm it is a progressive illness although everyone progresses at their own and different pace.It will be interesting though to hear how your ideas pan out when as with Lady A's husband, my dad lost interest in all food because his brain was forgetting and not computing the what and why he needed to eat. As the illness progresses for some food because akin to a foreign object being put in their mouths and as understanding and communication lessens it is impossible to persuade, cajole, reason or use any other strategy to influence or alter the path of decline. For the same reason at end of life for dad he needed to drink to help clear sepsis, but it was futile, his brain wasn't messaging his body the need for him to accept fluids orally and yes it was upsetting to try to encourage knowing I was not making a blind bit of difference. I hope in the years to come you and medics can prove me wrong with this, maybe it is only relevant to early stages. Like a lot of other illnesses some parts of the world don't have any incidences yet others do, so there probably is a reason why but I can't see how types of food etc can stop or prevent brain cells dying. Anything is worth trying but how can you measure whether the impact of your idea is a false positive or your dad having a plateau in his illness?

 

[philamillan]

However, something is. The rates of dementia are so wildly different even across western countries - why's Finland got a rate 16 times higher than Poland for example? that's what I'm keen to explore.

Interesting that you should mention Finland Trismes.

I also wondered about that as well.

Spent a good bit of time doing some research based on the premise that this must be an environmental problem.

What I found was that the water in Finland is one of the most polluted in the world because of the fact that they are one of the biggest producers of paper in the world. They are 7th largest in the world for a relatively small country.

In 1983, Finland created the Ministry of Environment to set up departments focused on specific aspects of conservation and nature policy. This ministry largely floundered without a cohesive environmental policy, until the development of more sophisticated monitoring and pollution-measuring technologies to assess water and air quality.

My belief is that the environmental pollution prior to that period has had a long term impact on the older population. My specific interest is Aluminium which is used in the paper manufacture and contaminates the rivers. This is not a problem now as they have done the work to reverse the problem.

Dementia is a slow burn with evidence of plaque formation up to 40 years prior.

I will always state my view that dementia is an environmental disease which could be addressed for future generations.

 

[LadyA]

Interesting that you should mention Finland Trismes.

I also wondered about that as well.

Spent a good bit of time doing some research based on the premise that this must be an environmental problem.

What I found was that the water in Finland is one of the most polluted in the world because of the fact that they are one of the biggest producers of paper in the world. They are 7th largest in the world for a relatively small country.

In 1983, Finland created the Ministry of Environment to set up departments focused on specific aspects of conservation and nature policy. This ministry largely floundered without a cohesive environmental policy, until the development of more sophisticated monitoring and pollution-measuring technologies to assess water and air quality.

My belief is that the environmental pollution prior to that period has had a long term impact on the older population. My specific interest is Aluminium which is used in the paper manufacture and contaminates the rivers. This is not a problem now as they have done the work to reverse the problem.

Dementia is a slow burn with evidence of plaque formation up to 40 years prior.

I will always state my view that dementia is an environmental disease which could be addressed for future generations.

Isn't this link the reason that aluminium saucepans are frowned on these days, particularly for cooking anything acidic?

 

[philamillan]

Found this summary online.

Aluminum cookware and utensils: Boiling water in aluminum pots produces toxic hydro-oxides, boiling meat produces chlorides and frying bacon in an aluminum pan increases nitrates. Aluminum teapots should be avoided because the tannic acid in the tea tends to allow aluminum to leak into the tea.

Food Additives: The following food additives contain aluminum compounds: E173, E520, E521, E523 E541, E545, E554, E555 E556, E559. Aluminum is a common food additive found in foods such as processed cheeses, table salt, baking powders, pickles, bleached flour, prepared dough, cake mixes, non-dairy creamers, vanilla powders and some donuts and waffles. Milk formulas for babies can contain up to four hundred times more aluminum than breast milk.

Medications: Antacids quite often contain aluminum trisilicate as does buffered aspirin. Antacids can contain 200 milligrams or more of elemental aluminum in a single tablet. Certain popular antacids contain aluminum hydroxide. Aluminum is present in popular over-the-counter and prescription medicines such as certain pain-killers and anti-diarrhea medicines.

Other products containing aluminum: Aluminum can be found in toothpastes, nasal sprays, anti-antiperspirants, dental amalgams, cigarette filters and pesticides. Some metal cleaners contain aluminum oxide.

Additionally, all tinned products with lift off lids tend to be made with aluminium and the canned soft drinks and alcohol cans are aluminium. Plus all the boxed juices in the supermarket have an aluminium foil lining.

It is everywhere! Do you cook using aluminium foil?

Sigh! My brothers and sisters perish for a lack of knowledge.

 

[trismes]

I hope your dads illness doesn't progress into moderate or advanced stage as my dad and most do and will, leading to end of life. Atm it is a progressive illness although everyone progresses at their own and different pace.It will be interesting though to hear how your ideas pan out when as with Lady A's husband, my dad lost interest in all food because his brain was forgetting and not computing the what and why he needed to eat. As the illness progresses for some food because akin to a foreign object being put in their mouths and as understanding and communication lessens it is impossible to persuade, cajole, reason or use any other strategy to influence or alter the path of decline. For the same reason at end of life for dad he needed to drink to help clear sepsis, but it was futile, his brain wasn't messaging his body the need for him to accept fluids orally and yes it was upsetting to try to encourage knowing I was not making a blind bit of difference. I hope in the years to come you and medics can prove me wrong with this, maybe it is only relevant to early stages. Like a lot of other illnesses some parts of the world don't have any incidences yet others do, so there probably is a reason why but I can't see how types of food etc can stop or prevent brain cells dying. Anything is worth trying but how can you measure whether the impact of your idea is a false positive or your dad having a plateau in his illness?

When it gets to that stage, I guess all anyone can do is simply manage the decline as best as possible. If it does get to that with my dad, then no this approach will not have been a success. I do think this is really only something that can work in early stages but I don't have the experience to know.

How do we know... well this is backed by a lot of studies all ready. As I've said before, there have already been studies showing the disease halting with bacteria transplants in mice models. The gut-brain connection is poorly understood so as for exact mechanisms I don't know. However, amyloid plaques have been shown to be antibiotic; they now appear the body's natural defence against invasion. Brains of dementia patients have 10 times as much bacteria in them as non-dementia ones. So even if we've not got it exactly right, I'm confident this is the right path.

the foods feed bacteria, and different foods, different bacteria. It's an ecosystem. the traditional approach of antibiotics - effectively a nuclear bomb for your ecosystem destroys everything as opposed to fostering certain types of bacteria than act as a defence.

Clinically, a single case study counts for nothing which is why I was asking for advice as to whether or not a full clinical trial should be the next step and if so how, or alternatively detail the method for others to try .

 

[trismes]

What I found was that the water in Finland is one of the most polluted in the world because of the fact that they are one of the biggest producers of paper in the world. They are 7th largest in the world for a relatively small country.

Interesting. I saw the Ganges river last year - absolutely filthy - and a guy was telling us the pollution is causing premature dementia locally. Similarly, from memory, I'm sure it was Finland where in the 70s they were suffering from some of the highest heart diseases in the world, and spent millions on a campaign getting the local hard men to eat veg, as it was seen as effete.

What links these things I believe is microbiomes offer a defence against a whole host of toxic loads and viruses. Maybe toxins don't simply destroy the brain, they destroy communities of bacteria that lower the defences.

From your investigation, is there a reason why you settled on aluminium? Are other pollutants correlated at all?

 

[Oh Knickers]

This has been an interesting discussion. Our father, having been in pretty good form went downhill with Vascular Dementia and died within 4 years. He was still driving well aged over 87. Mother, who has always had a catastrophic diet and done very little exercise is in slow fall and has had FTD for a good 15 years. Her memory is now falling off a cliff and she had galloping Osteoporosis for longer. Lady A's comments are particularly interesting as they indicate the genetic element.

With regards to aluminium drinks and food (of any sort) cans they are lined with a plastic coating. Without this, the drink or food would be spoiled. Beer, in particular, picks up tastes and Coke is so acidic the pipes in the Coke factory are renewed every 6 months.

See link below:
https://www.wired.com/2015/03/secret-life-aluminum-can-true-modern-marvel/

The reason we have a care epidemic is, having studied the statistics, is down in part to people surviving having been handicapped to some degree in accidents. Survival is so much better since the legal requirement for use of the seatbelt and huge developments in medical care improving survival rates. Other reasons will be better home heating and housing stock as well as the introduction of the universal state pension in 1948. Initially, the majority of people only survived 2 - 5 years after retirement. We are now surviving 20 - 30 years post retirement.

I have friends, younger than I, who remember going to Grandparents homes that were damp and the furniture was being eaten by woodworm. They didn't dare put their feet on the chair rungs as they were likely to disintegrate!

So, yes, take care of what you eat but live well in all senses. We are all going to come into contact with things that may, or may not, cause problems whether it be dementia or some other illness. How any substance affects is idiosyncratic. My poor youngest is universally banned from eating bacon. The preservative in bacon sends her loopy la la and she is at risk of being killed by those around her! Otherwise, she is generally delightful.

 

[canary]

How do we know... well this is backed by a lot of studies all ready. As I've said before, there have already been studies showing the disease halting with bacteria transplants in mice models.

Please be aware that so far nothing that has worked in mice modals has worked with people. Scientists are beginning to think that the mechanism in mice and humans is different, so mice modals wont tell us anything.

 

[trismes]

Please be aware that so far nothing that has worked in mice modals has worked with people. Scientists are beginning to think that the mechanism in mice and humans is different, so mice modals wont tell us anything.

Hey there, I'm not aware of any studies done using transplants with humans on dementia, but please do post them if you have.

 

[canary]

Im really not sure of the relevance of this.
There have been lots of studies of mice modals and lots of things that seem to work on mice that have been hailed as a breakthrough, but do not work at all on humans.
Are you saying that your advice is based on transplants which have been done on mice? If so, how do you know that it would work on people?

 

[trismes]

OK ignore the mice for a minute.
All of our microbiomes offer protection against a whole host of diseases, and are an effective second brain, with messages sent from the gut to the brain all the time.
Many diseases, including dementia, have correlations with markedly different gut profiles to non dementia patients. Correlation or causation?

So off the back of this, transplants have been tried with mice models. this is obviously a first step. And they worked.

the use of transplants in this country is limited to c-diff at the moment so we went with specialised diet route, with advice. it's the next logical step, and yes it's working so far. So good.

As I've said before, this is unproven. but it is easy for people to pick up the details, its cheap and if their GP agrees, why wouldn't you try it?

If there is anything in it, it'll be years before being published and even longer before it becomes advice by which time it'll be too late for most of our relatives who've already been diagnosed.