Tell my children or not?

[J11]

One way to handle this would be genotype your wife. There is only a 15-20% chance that she too is APOE4.
Even if your wife has one APOE4 there is only a 50% chance that for a given child they would receive the APOE4.
There would be no reason to alarm your children with your apoe44 genotype if they were at no risk of being double 4 carriers.

It is also important to remember that for men a single APOE4 allele does not confer significant risk of AD. 23andme has brought down their risk estimate for single APOE4 carriers.

It would probably also be a good idea to wait a few months before discussing this further. The methylene blue phase 3 trial in mild to moderate AD is scheduled to end in November of this year. If the results of this trial were positive (which would be consistent with the recently published phase 2 results that found a near complete stabilization in AD patients during the 1 year treatment period), then even if family members had inherited a APOE44 genotype, they would be comforted in knowing that an effective treatment had already emerged.

We have done a full exome scan, though it has not been very informative. Until researchers fill in the genetic gaps with large scale full genome and exome sequencing, there is not that much value in individuals sequencing themselves in hopes of finding rare variants. We might be a year or two away for such sequencing by individuals to be worthwhile.

It is also important to remember that we now are living in the Age of Alzheimer's. One should not assume that being a non-4 carrier means that dementia risk can be forgotten. In our family, a family member was genotyped APOE 34. It was assumed that the parent with a history of AD was the source of 4 allele. This parent was not the source!! This person genotyped 33! We were very surprised. There was no known history on the 4 side of the family.

In fact researchers now realized that everyone 90 years or over have at least early stage AD neuropathology.
Paradoxically, it is quite possible that members of this thread (even though they are genetically at higher risk of AD) will through their lifestyle modifications and early treatment interventions (e.g. methylene blue), ultimately be at lower AD risk than those who are at low genetic risk (due to their inattention to their lifestyles. The old tortoise and hare scenario).

[Nords]

Nords, thank you so so much for your honest post. I'm serious about being very grateful. I'm about to show my husband and insist we follow it. I am the same age as you but he is 60. It cut thru all the handwringing crap that sometimes clouds my thinking. I needed this and prolly many others did too.

You're welcome, Stavia.

I've had a lot of time to think about it...

[Gilgamesh]

I have no children but faced the question of telling other relatives. For me, both options, telling, and not telling, seemed problematic (for diff. reasons).

I finally decided the right thing to do was simply to ask whether people wanted to be told. This had to be done in a way that didn't scare them, of course (therewith telling them something via the question itself), but that wasn't too hard. "With 23andMe, everyone gets some good news and some bad news, and since we're related...", and so on.

Most in my family wanted both to be told, and to be tested! But not all.

That's just me. We're all different and have different family situations. It's complicated -- esp. with the long-term care question, which I wasn't thinking about when I got my results.

GB

[circular]

Another thing I've done that so far has suited my situation is to just weave into conversation my focus on brain health "given my higher family risk for AD". Not that *anyone* has made any response whatsoever. People who most need to think about it just hear "diet/lifestyle change = not for me". Never reply on the subject.


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[Julie G]

Nords, your post resonated with me on many levels... I recently inherited the care of my 86 year old (childless/divorced) uncle with frontotemporal dementia. His affairs were so incredibly messed up by the time I got involved (February 2015) that we are just NOW beginning to see the light of day.

Unbeknownst to me, his previous "caretaker" had not paid his assisted-living facility rent for a year, un-enrolled him from Part B Medicare for several years, allowed his supplemental medical insurance to lapse, accrued thousands of dollars of medical and other debt, failed to file or pay taxes for years, etc. The worst part, my uncle had the money; the caretaker just had a better use for it . My husband and I ended up taking a $40,000 loan for him just to get him to a place of semi-financial stability. The amount of work that it has taken to resolve things (still working on it) is i.n.d.e.s.c.r.i.b.a.b.l.e. I completely empathize with what you've gone through with your dad & grandfather. You make a strong case for telling your children and bringing everything out in the open ASAP. Planning and projecting for the future are key.

I'm a homozygote. I was completely freaked out when I learned as I WAS exhibiting symptoms of cognitive decline at the time; doing better now. I'm embarrassed to admit, I was selfish and sloppy in the telling . I told my mother three brothers and son without even realizing I was (possibly) revealing their statuses. Belatedly, I understood...and felt awful.

In retrospect, however, it's been a really GOOD thing. My 77 year old Mother is following some (not all) of Dr. Bredesen's protocol and is doing better. I see her overall cognition improving. She had lost her sense of smell and is beginning to regain it- a very good sign. My 22 year old son had many biomarkers out of whack and is working on them. We just re-tested his homocysteine after following the Vitamin B protocol for a year. It dropped from 12.5 to 5.5!

My three brothers, on the other hand, just didn't care. They were all initially oblivious, but over time I've seen them ALL make positive lifestyle and dietary changes that they wouldn't otherwise have done. My oldest brother has just spit in the 23andMe tube to verify his E4 status; I'm really proud of him. It takes time for some people to wrap their heads around the implication of this knowledge, but bringing it to the light of day begins the discussion. We know that Alzheimer's takes decades to develop. There are definite steps at-risk folks can take to extend their useful lives. If we tiptoe around the subject, we deny our loved ones the opportunity to make those changes...and the opportunity to plan for the worst.

So, thanks for coming out of lurker status with your great post. I couldn't agree more; TELL.

[Nords]

Nords, your post resonated with me on many levels... I recently inherited the care of my 86 year old (childless/divorced) uncle with frontotemporal dementia. His affairs were so incredibly messed up by the time I got involved (February 2015) that we are just NOW beginning to see the light of day.

Unbeknownst to me, his previous "caretaker" had not paid his assisted-living facility rent for a year, un-enrolled him from Part B Medicare for several years, allowed his supplemental medical insurance to lapse, accrued thousands of dollars of medical and other debt, failed to file or pay taxes for years, etc. The worst part, my uncle had the money; the caretaker just had a better use for it ;). My husband and I ended up taking a $40,000 loan for him just to get him to a place of semi-financial stability. The amount of work that it has taken to resolve things (still working on it) is i.n.d.e.s.c.r.i.b.a.b.l.e. I completely empathize with what you've gone through with your dad & grandfather. You make a strong case for telling your children and bringing everything out in the open ASAP. Planning and projecting for the future are key.

I'm sorry about your uncle. Caretaker theft is a huge problem, and largely undetected. My Dad's finances were a mess, but at least they were in better shape than Grandpa's. Nobody had really taken advantage of either of them... yet.

When my grandfather's dementia kicked in, he started eating at a local Friendly's restaurant. Every day. Three meals a day. The breakfast special-- sausage, eggs, bacon, hash browns, OJ & coffee-- each and every meal. For over four years. My Dad learned later that Grandpa would eat about $7 worth of food and leave a $20 tip on top of the $7. I'm sure the wait staff had fistfights over who'd get to be his server each time. When you're tipping over $400/week, people start to notice.

When my Dad was in early stage Alzheimer's (about six months before he ended up in the hospital), he was persuaded to cash in four whole-life insurance policies in exchange for a single-premium policy. The reason Dad did it is because he was upset by a letter from his insurer that the whole-life policies weren't earning enough to pay the premiums, so they needed another cash infusion to maintain the premium payments. But instead of sending a few hundred bucks to the insurance company, an agent persuaded Dad to spend about $7500 in fees to convert the policies. Criminal? Not enough evidence. Ethical? Not a bit. They even filled out the whole package for him and all he had to do was scrawl his signature.

If Dad had consented to a durable POA (let alone set up a revocable living trust) then we probably would never have had to go to the courts to take over his affairs. I don't know if Colorado is typical, but the guardian and the conservator have to be separate people. In order to do what your uncle's caretaker did to him, the guardian & conservator would have to go into cahoots and not rat each other out.

Caretaker stress is bad enough without having to deal with the finances as well. My brother and I are each glad that he's the guardian and I'm the conservator.

[Fc1345linville]

Circular, thank you so much for your thorough, thoughtful response. You have given me much to think about that I had nooooot considered fully. Very, very helpful.

[Fc1345linville]

Circular, Juliegee, Stavia, Teezer, GeorgeN, Nords and SusanJ;

I hope I did not leave anyone out. I really am blown away by the generosity of all of you to be willing to share your own insights on this subject, and I will re-read them, taking notes.

I think I will ask my wife to be tested, and if I decide to tell my children, I will pre-pay for their own testing.

My wife and I both have revocable trusts and AMDs, and I update a list of passwords/IDs annually, located in my safe deposit box. That all makes sense regardless of genes.

Thanks again to you all, and a particular thank you to all of those who spend many hours keeping this fabulous forum going!

[circular]

This looks like a fairly good summary overall, that is easy to print out or link to and give to family members or friends who are just beginning to realize they may need to think about this. Many won't be inclined to visit this forum. I haven't looked at all the linked articles, and I'm sure there are nuances (e.g., we may need higher amounts of omega 3 not lower), but as a general overview it looks pretty good and provides structure at a time our minds tend to go haywire with the new information about our genetic risk.

http://youniquegenomics.com/wp-content/ ... eimers.pdf

[J11]

I want to re-energize this thread because it had such great suggestions on the nitty gritties on how to cope with legal and financial aspects of managing the progression into dementia and beyond for family members.

I want to share our family's experience of the outcome of our legal and financial plans.
In our family the power of attorney was split between family members who retained POA over personal care for our loved one and
POA for finances went to a lawyer and financial advisor.

We learned at one of the first meetings with our lawyer that he would be charging us $350 per hour to fill in pieces of paper and visit various banks etc. . There is no possible way that our family had ever agreed to such a fee structure. Our lawyer fully realized that he could write his
own paycheck with our loved one's hard earned money as soon as dementia had been established. We had never thought to talk about such matters before.

The financial advisor has also considered it a high priority to transfer all assets into the control of the financial services firm where they work. Conflict of interest? Any transactions would then generate a commission. None of this was ever intended by our family.

So we are in something of a bind. Everything had been carefully planned ahead. However, giving carte blanche authorization to other people to control the life savings of family members after they progress through into dementia makes very little sense.

If we had it to do over again we would have divided the families financial assets to the control of perhaps up to a dozen financial advisors.
The family would retain control over the moving of money from one advisor to another, without having POA over finances.

For legal assistance, a wide range of legal providers could be chosen from a list or the yellow pages. Changing lawyers would be at the
discretion of the family.

Those lawyers who attempted to break any pre-established fee structures that had been arranged with our loved one would be arrested and charged with fraud.

If you do not carefully think through what could happen if you give your life savings to professionals with a very low sense of morality
then you could get stuck in the same boat that we are in.

It would probably not be unexpected that legislation will be introduced that clearly defines the fee structures for those who are acting as fiduciaries for those with dementia. At some point the political and moral power of the dementia community will be felt. I am not sure if our lawyer would ever work again if we were to post his billings to us on the internet. It is surprising to me how much sympathy and compassion we have received from many of the ordinary people who we have met ( much more so than the professionals who have charged us extraordinary amounts of money).


Let this be a warning to you.
Hopefully you can learn from our mistakes.