Memory loss / dementia - progression and treatment

[Sojourner]

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Originally Posted by ExFlyBoy5 I also second the emotional support groups or something similar. This battle should be fought with the assistance of others that are going through it as well. And of course, you still have my #, so feel free to call ANYTIME if you want to chat. Also, we will be in ATL in April, so if COVID isn't crazy...perhaps we can have another happy hour; it's been too long!

Great to hear from you, ExFlyBoy, and thanks for the suggestions! I'll PM you.

[Sunset]

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Originally Posted by WestUniversity With my parent it was a gerentologist. Look up a document called “The Global Deterioration Scale”. It will list seven stages of cognitive decline and a list of characteristics of each stage. When you read through each stage one will most likely stick out. There are many variations of this document with various characteristics for each stage

Thanks for posting this.
Looks like I'm a 2.

Seems Dad, which we've noticed the past 9 months has had memory issues is a 4 or even 5 level. Fortunately he is not in denial but nobody hassles him over not remembering so maybe he doesn't notice.

[daylatedollarshort]

This might be a good resource - "When I was first at Loma Linda University Medical Center in 2008, our data showed that less than 5 percent of our older patients had dementia. But when we went to communities right next door to Loma Linda, we saw markedly increased rates of dementia and stroke. This huge disparity confirmed the influence that community and lifestyle have on Alzheimer’s. Our patients in Loma Linda, as you know, have very different lifestyles than the average American: they are Seventh-Day Adventists, eat mostly vegetarian meals, exercise regularly, and have strong family and community ties. Based on our clinical work and over 300 scientific papers, we outline a proven program to prevent Alzheimer’s disease and reverse cognitive decline in The Alzheimer’s Solution. We use an anagram in our program called NEURO that defines the multi-faceted approach we take: Nutrition, Exercise, Unwind, Restorative Sleep, and Optimize Mental and Social Activity."
https://www.bluezones.com/2017/09/re...ventable-find/

Also, dementia is linked to altered microbiomes and there are cheap home tests that can be ordered these days to compare a patient's microbiome to healthy averages. "Your gut microbiome may be linked to dementia, Parkinson’s disease and MS" - https://theconversation.com/your-gut...-and-ms-144367

Somewhat more controversial is the Breseden protocol, but except for the testing, is mostly a can't hurt, might help type of lifestyle improvement program, not too different than the Loma Linda doctors' advice, like getting enough sleep and not being zinc deficient - https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4931830/

[bloom2708]

He could try a whole food, plant based diet. Fix the gut biome.

At least halt and potentially reverse some of the damage. But, change is difficult for most. Not all.

[HarveyS]

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Originally Posted by Sojourner ...DF has a full-time companion/partner who is about 12 years younger than he is, and she takes wonderful care of him. I expect she will be there for the duration, even though they aren't married. She is a godsend for our family. I'm very hopeful she will be fully on board with everything that my siblings and I feel is best for DF going forward.

Why wouldn't the full-time companion/partner be part of the discussion to determine what is "best for DF going forward"?

[ExFlyBoy5]

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Originally Posted by bloom2708 He could try a whole food, plant based diet. Fix the gut biome. At least halt and potentially reverse some of the damage. But, change is difficult for most. Not all.

Is this scientifically proven? I tend to doubt this claim.

[Sojourner]

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Originally Posted by HarveyS Why wouldn't the full-time companion/partner be part of the discussion to determine what is "best for DF going forward"?

She is. My comment was more forward looking, as in I'm hopeful that we'll continue to all be in agreement and work together, with minimal friction, as the years progress and DF deteriorates.

[daylatedollarshort]

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Originally Posted by ExFlyBoy5 Is this scientifically proven? I tend to doubt this claim.

I posted several studies on this topic in this thread - https://www.early-retirement.org/forums/f38/it-looks-like-dementia-can-be-reversed-104588.html. There are the Dale Breseden papers, the Finnish FINGER study, and Alzheimer's was reversed in a mouse model with diet changes. These are all on Pubmed. Also, as I noted above, only 5% of seniors in Loma Linda following a Blue Zone diet and lifestyle have dementia compared to much higher rates in the surrounding communities that do not follow the Seventh Day Adventists lifestyle guidelines. The Loma Linda people also tend to live 5 - 10 years longer than the rest of the U.S.


"A diet containing compounds found in green tea and carrots reversed Alzheimer's-like symptoms in mice genetically programmed to develop the disease, USC researchers say......"You don't have to wait 10 to 12 years for a designer drug to make it to market; you can make these dietary changes today," said senior author Terrence Town, a professor of physiology and neuroscience at the Keck School of Medicine of USC's Zilkha Neurogenetic Institute. "I find that very encouraging."
Sources: https://www.sciencedaily.com/release...0306133414.htm

[bloom2708]

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Originally Posted by ExFlyBoy5 Is this scientifically proven? I tend to doubt this claim.

People expect a pill to fix everything. A pill rarely fixes anything.

The effects of a plant based diet are supported by studies for years.

I tend to doubt you will believe me.

I toss it out so people can do their own research.

[WestUniversity]

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Originally Posted by Sojourner Thanks for this reference. I looked it up and read the document (on the memoryworks.org site), and my best guess is that DF is just now entering stage 5. If I had to say, I think he was in stage 4 for at least the past two years, maybe 3. Hopefully this will be the case for stage 5, too.

One of the references I found years ago also had time ranges in years attached to each stage. IIRC the overall average for stage one through stage seven was about 8 years, and for my parent it was about that amount of time...

[ivinsfan]

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Originally Posted by Amethyst But if you do lose your temper on occasion, don't beat yourself up over it. It is much more irritating to deal with infantile behavior from an adult than it is from a toddler. You didn't sign up to be a saint or a martyr, no matter how many societal messages you will get along those lines (especially, of course, if you are female).

Been there done that.....somedays there was just a tiny part of my brain that wouldn't process the fact that my former kind and considerate MIL wasn't berating and hollering at me on purpose.

Those rare and infrequent moments usually ended with both of us crying.

[ivinsfan]

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Originally Posted by Bamaman We went through this with my aunt. You want to get the legal issues settled while they have the decision making skills to do it "their way." Auntie later told everyone she came in contact with that her nephews kidnapped her and brought her from her perfect home to "this awful" assisted living and later nursing home. She was actually in very nice places in her home town. She lived 3 months short of 100 years old.

That story is actually pretty common, my MIL for some reason told everyone that her youngest son was stealing her money. The middle son actually handed her finances and was absolutely honest.

[ivinsfan]

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Originally Posted by WestUniversity One of the references I found years ago also had time ranges in years attached to each stage. IIRC the overall average for stage one through stage seven was about 8 years, and for my parent it was about that amount of time...

this is harder to estimate when the person in question has a live in partner. Often the partner will go out of their way to coverup what's going on.

My FIL died suddenly and within the month we realized Mom had serious memory issues. So we don't really have a full timeline for her.

[Scrapr]

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Originally Posted by ivinsfan this is harder to estimate when the person in question has a live in partner. Often the partner will go out of their way to coverup what's going on. My FIL died suddenly and within the month we realized Mom had serious memory issues. So we don't really have a full timeline for her.

I'm not sure it's an intentional cover up. Us kids came to believe that Mom & dad adjusted to each other & "helped" each others deficits. When one or the other isn't there to help the changes are easier to see

[rodi]

As was mentioned earlier in this thread... Make sure the legal stuff is done. Preferably before the official diagnosis makes it impossible. We ran into this with my MIL. She had POA for FIL - but developed dementia herself. The POA for FIL could not be transfered to her children. He wasn't competent to sign over POA to anyone. And her dementia denial made her block attempts. Her dementia, unfortunately, prevented her from caring for FIL well enough... it was a mess. The state stepped in and insisted one of the children needed to get 'guardianship' of both FIL and MIL.... this involved a court appearance and MIL fought it tooth and nail. It was humiliating for her to be told in court that not only was she not competent to care for/make decisions for her husband, she was no longer competent to handle her own affairs.

Make sure the POA is in place.

FIL passed away a year after this. But MIL is still going strong at age 93. She's in an assisted living/memory unit and is no longer angry... because she doesn't remember.

[ivinsfan]

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Originally Posted by Scrapr I'm not sure it's an intentional cover up. Us kids came to believe that Mom & dad adjusted to each other & "helped" each others deficits. When one or the other isn't there to help the changes are easier to see

It can be a little of both things no doubt. It's certainly not nefarious in any way. In my MIL's case I have no doubt my FIL knew things were very wrong, for whatever reason he kept this info to himself.

[ivinsfan]

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Originally Posted by rodi As was mentioned earlier in this thread... Make sure the legal stuff is done. Preferably before the official diagnosis makes it impossible. We ran into this with my MIL. She had POA for FIL - but developed dementia herself. The POA for FIL could not be transfered to her children. He wasn't competent to sign over POA to anyone. And her dementia denial made her block attempts. Her dementia, unfortunately, prevented her from caring for FIL well enough... it was a mess. The state stepped in and insisted one of the children needed to get 'guardianship' of both FIL and MIL.... this involved a court appearance and MIL fought it tooth and nail. It was humiliating for her to be told in court that not only was she not competent to care for/make decisions for her husband, she was no longer competent to handle her own affairs. Make sure the POA is in place. FIL passed away a year after this. But MIL is still going strong at age 93. She's in an assisted living/memory unit and is no longer angry... because she doesn't remember.

We managed this in literally at the last second. And I'm not entirely certain the family lawyer didn't just look the other way. He knew our family, I don't know if that made a difference. He made a point not ask my MIL any questions as the POA meeting.

[RetiredAndLovingIt]

A little off base but please make sure your loved one does not have any access to guns. I just heard of a recent shocking and terrible tragedy that so could have been avoided. Details are still still cloudy at this time but it seems that an elderly lady in her 90's called the police to report an intruder and when the police showed up she came out of the house with a shotgun and refused to put it down and then pointed it at them and they shot her dead. Neighbors that witnessed it are calling it an unfortunate accident and apparently the police did try to de-escalate the situation but when someone points a shotgun at a cop, it's not going to end well. She was almost blind and had dementia and was probably out of her mind with fear. She did have carers but don't think full time. So terribly sad.

[ivinsfan]

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Originally Posted by RetiredAndLovingIt A little off base but please make sure your loved one does not have any access to guns. I just heard of a recent shocking and terrible tragedy that so could have been avoided. Details are still still cloudy at this time but it seems that an elderly lady in her 90's called the police to report an intruder and when the police showed up she came out of the house with a shotgun and refused to put it down and then pointed it at them and they shot her dead. Neighbors that witnessed it are calling it an unfortunate accident and apparently the police did try to de-escalate the situation but when someone points a shotgun at a cop, it's not going to end well. She was almost blind and had dementia and was probably out of her mind with fear. She did have carers but don't think full time. So terribly sad.

There are a lot of things you have to keep away from people with this condition. At some it all gets overwhelming to everyone.

[daylatedollarshort]

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Originally Posted by ExFlyBoy5 Is this scientifically proven? I tend to doubt this claim.

I forgot to add to my list above more on the microbiome. It has been proven that dementia and related disorders are often linked to dysbiosis. There are many studies on this. Here is one: "Our findings highlight the role of gut microbiota dysbiosis‐promoted neuroinflammation and neurodegeneration in AD progression, and further suggest a novel strategy for AD therapy by targeting gut‐brain axis." https://alz-journals.onlinelibrary.w...002/alz.044151

There are also many studies on how to have a healthy gut microbiome and self tests you can order on Amazon for $100 - $200 that tell you the major types of bacteria in your gut and what you can do to improve your microbiome. The last doctor ordered medical test I had was $7K and told me nothing of value. I'm going to order a load of these kinds of inexpensive at home gut and metabolite tests on my own and tweak my diet until they come out as good as I can get them. That is my 2021 plan.

I started with the Food Marble breath analyzer and it is amazing. I am pretty convinced microbiome and related testing is going to be the future of modern medicine. It is wild how many diseases already have been linked to specific kinds of altered gut microbiomes.