Memory loss / dementia - progression and treatment

[ExFlyBoy5]

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]

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]

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]

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]

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]

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]

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]

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]

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]

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]

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]

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]

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.wiley.com/doi/abs/10.1002/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.

 

[skipro33]

Make sure your loved one has a durable power of attorney for financial and medical on file as well as a will and living will before you have them declared mentally declining.
After we got all this done for my dad, I took him to a neurologist and he was diagnosed with Alzheimer's and I could step in to manage his finances and medical decisions. We cashed out life insurance policies that would not pay but a few thousand more than they would at the time of his death in order to have the funds available for his needs. Those policies that would benefit from reaching maturity at death, we changed to myself as beneficiary instead of his estate. Made it much easier at his time of death to cash in.
He lived with us for years before requiring more professional care and moved him into a memory care facility where he lived for 2 years before passing away last fall.
I was able to sell his real estate and personal property in the meantime, which all helped fund his needs above the amount he was receiving from a pension and SS.

 

[ncbill]

You might have to file a change of address with the USPS...mom would get frustrated at not being able to comprehend what she was reading so she started destroying her mail.

We used a revocable trust for mom...no resistance from her once we got the diagnosis, plus she knew the eldercare lawyer via a personal contact already.

We named the kids as co-trustees (not successor) and granted trustees the ability to act alone...as a practical matter I ended up the only person acting as trustee.

And remember to get the health care POA setup as well...with the health care agent granted the broadest powers possible, because to be blunt they're likely to have to make some tough decisions, especially towards the end...and they can often experience pushback from well-meaning, but clueless individuals.

 

[Sojourner]

A little off base but please make sure your loved one does not have any access to guns.

Thanks for this suggestion. DF does has a small pistol in the house, so next time I'm over there I will go get it and take it home with me. There is no way he could handle it safely at this point.

 

[Sojourner]

Make sure your loved one has a durable power of attorney for financial and medical on file as well as a will and living will before you have them declared mentally declining.

You might have to file a change of address with the USPS...

We used a revocable trust for mom...

We named the kids as co-trustees (not successor) and granted trustees the ability to act alone...

And remember to get the health care POA setup as well...

All good suggestions and things to think about sooner rather than later.

Are there any books or websites that go into all these things in a comprehensive way? I feel like I need a step-by-step guide, since I have zero experience with POA, living wills, or anything like that.

I'm not sure I've ever had one meeting with an attorney of any type, and I wouldn't know how to find a good one in any case. Any recommendations would be greatly appreciated.

 

[ivinsfan]

All good suggestions and things to think about sooner rather than later.

Are there any books or websites that go into all these things in a comprehensive way? I feel like I need a step-by-step guide, since I have zero experience with POA, living wills, or anything like that.

I'm not sure I've ever had one meeting with an attorney of any type, and I wouldn't know how to find a good one in any case. Any recommendations would be greatly appreciated.

You have a tricky path to travel here...particularity since he has a long term partner.

First along with your siblings try to think about goals? An attorney won't go along with anything your Dad doesn't agree with. So your first step is to trying to talk to Dad and see if he seems competent to make some decisions.

There is no one right way to do things in these situations.

 

[rodi]

The change of address advise is good - IF you have authorization (POA/Guardianship) or permission from your parent. When the hubster became MILs guardian that was one of the most important things he did. He was then able to pay her bills. Get them switched over to our address (in a different state) and file the guardianship papers for all of her financial and business accounts.

An few examples of signs that MIL was starting to decline... she'd forget to pay her cable bill then a few months later complain to us (and the cable company) that she had no tv or cable. Same with trash pickup. Her area had multiple private trash pickup companies... she cancelled them all. And just put her trash out next to the neighbors... Until we started getting the bills (and didn't see trash in there) we had no idea.

Almost any attorney can do POA's. An estate/trust attorney can definitely do POA as part of a review or writing of a will.

 

[Sojourner]

The change of address advise is good - IF you have authorization (POA/Guardianship) or permission from your parent. When the hubster became MILs guardian that was one of the most important things he did. He was then able to pay her bills. Get them switched over to our address (in a different state) and file the guardianship papers for all of her financial and business accounts.

Thankfully, DF has a live-in companion/partner who is handling all these things for now. She is much younger than DF and still very mentally sharp. So, hopefully, there won't be a need for a change of address any time soon. But good to know about this, just in case.

 

[P.S.]

1. Ideally, gerontologist as primary care. Who will refer to neurologist to periodically evaluate and will be most up to date on meds. Either can/will order neuropsych testing.

2.
A. DPA, POA, living will, safety proof home, start planning long term.
B. for you and sibs:
- avoid/ treat/ get rid of long term health issues (diabetes/ hypertension/ thyroid/ etc)
- regular exercise (moderate, nothing extreme)
- anti-inflammatory diet
- anti-oxidant rich diet
- more than just sufficient, but avoid TOO much vitamins minerals: vit C, omega’s, Vit B’s
- brain health activities, i.e. lifetime of learning b/c use it, or lose it
- avoid brain trauma (including smoking, legal and non-legal)
- avoid neurotoxins (alcohol is one, but on the other hand has cardiac benefits)

and prob most important: sleep, sleep, sleep. Not excessive amounts, but at least 7.5h/night and best asleep well before midnight

N.B. caveat emptor, consult your own physician

 

[Keim]

This book has been an invaluable resource for us:
https://www.amazon.com/36-Hour-Day-Alzheimer-Disease-Dementias/dp/1455521159

 

[CardsFan]

Thankfully, DF has a live-in companion/partner who is handling all these things for now. She is much younger than DF and still very mentally sharp. So, hopefully, there won't be a need for a change of address any time soon. But good to know about this, just in case.

You mentioned this earlier, and it sounds like there is mutual respect between you and the partner. That is great, but you need to also figure out how much this partner should have in the say of your dad's care and in the finances.

I have no details, and have no recommendation other than you all getting on the same page BEFORE this go south.