'I am mine': Alzheimer's at 41 (2018)

Great Julianne Moore movie about early-onset alzheimer's disease called 'Still Alice'.

> Families of people with dementia land in different places on this issue, but to her, it’s beyond question that Jo is not here anymore; most everything that made him Jo has been stolen.

This was very sad, but it's a good articulation of the circumstances where I would rather die than continue living. Has anyone seen a good framework to help think through scenarios like these as part of a will or end-of-life directive? I've expressed a version of the above to my loved ones, but I'd like to be much more prescriptive about my wishes to take the decision-making burden off my family should it come to that.

Same. I'd also love to know. Especially for those among us that don't live in places with compassionate assisted suicide.

Here’s another idea. Let’s figure out a way to cure, or simply slow, the disease.

Think it can be done within two decades?

The mRNA Coronavirus vaccines were produced in under a year.

That was after years of R&D, of course.

Now maybe it’s possible to convince people to spend more on fundamental medical research.

UPDATE

I see my comments are not appreciated. We’re going with “just shoot me if this happens to me”

Anyway, maybe the seed investments by Gates and Bezos will eventually lead to a treatment.

https://www.biospace.com/article/bill-gates-and-jeff-bezos-t...

> good articulation of the circumstances where I would rather die than continue living.

I did my alternative civilian service in a nursing home for people with dementia when I was 19. I have noticed 6 stages:

1) Fear that something is wrong with their memory and incredible efforts to hide it (this is usually before they live in a nursing home).

2) Anger, shame and desperation.

3) Internalization, they then either make melancholy jokes ("My head's not what it's used to be"), or they completely give themselves up. Often they refuse to eat. We did not have such a case, but I assume that some patients in this stage commit suicide.

4) Total confusion (that happens when the internalization is also forgotten), patients still have enough memory capacity to realize that something is terribly wrong (they usually try to return "home" or are searching for their children/spouses/parents), but they don't understand that they are ill anymore. The nursing home where I worked had codes on every door, but in this stage some patients were still able to trick the staff and wander off.

In stage 5), many patients fell into a child-like trance where they just consumed food and watched the world in complete wonder. I never had the feeling that they were unhappy, in fact they often laughed (e.g. when they saw children, when we played songs or when you just sat with them for a while). We had one old lady who happily recited poems she had learned in elementary school all day.

I never want to end in stage 6, but I am quite certain that the patients in that state had no mental capacity left to experience it.