Hacker News Reader

Comment by dzink | Hacker News Reader

The big question is would you want to know of you have Alzheimer’s early at this point? Is there reliable treatment or cure? Those would be easier to develop if a reliable test is invented, but without them, would an adult likely only gain the loss of agency of their life? What would you do to prepare you and loved ones for losing yourself? What would your remaining life change into, by knowing? What would your loved and not so loved ones do if they knew?

View on HN

I would use the time to get my finances in order - which essentially means moving as many of my assets as possible out of reach of the predatory nursing home and memory care industry.

I would try and find a way transfer all my assets to my children and/or spouse, and ensure they would never list me as a dependent anywhere. I'm not clear if the nursing home can take your spouse's assets or not. If so we would need to file for divorce to protect her assets.

I would essentially go broke and let medicade pay for my care. Sure they don't put you in in the "finest" facility, but pretty soon you'll be far enough gone it won't matter. The expensive places are just widow dressing anyway. You are treated the same everywhere.

You have a very dark view. As someone who has put a few family members through nursing homes and hospice my experience was very pleasant.

Nobody was after their money. No one was trying to rip them off. The hospice care was kind and supportive.

Why do have some idea that a nursing home is going take you money? I’ve never heard of these situations outside of Reddit.

Me too. Who paid for that pleasant experience? https://www.npr.org/sections/health-shots/2022/07/28/1113134...

Medicare.

Both of my grandmothers had Alzheimer's, and both clearly in retrospect tried to hide their problems as long as possible. Knowing might have made some difference in type of care, but not much, and at least one of them clearly explicitly hid it because she was as scared of the potential consequences of e.g. ending up in a nursing home as she was of the condition itself. I'm terrified of getting it, given what I've seen of it, and the prevalence of it in my family, but I'm not at all confident I'd want to know because of how it might affect my enjoyment of the time I'd have left.

At the same time, by the time it becomes a question, odds are the patient may be showing symptoms where it isn't a question if anything is wrong, but whether or not what they have is treatable (that we know something was seriously wrong was the case for both my grandmothers). Perhaps being able to rule Alzheimer's out will be helpful in that respect.

My father told me he loved me and was proud of me and how i turned out and that he had no regrets (He doesn't really know my name anymore). I would do the same for my loved ones and tell them things are ok and to let me go. (I've also told them if i don't remember them, the wolves will take good care of me!) Looking a his lifestyle and considering this as an epidemic, lifestyle & inflammation seems to be big factors. Diabetes and Pre-Diabetes are also risk factors. If i was aware early enough i would start exercising more, adopt an anti-inflammatory diet, meditate and consider psychedelics https://pubmed.ncbi.nlm.nih.gov/32973482 and get my affairs in order as much as i could. So basically the test may help people shift gears harder and consider lifestyle changes and preparation.

Yes, absolutely I'd want to know, the same as I'd prefer to know my date of death if possible, so I can have a clearer understanding of how much time I have left to complete my goals. I operate under the understanding that I might die instantly at any moment and that's fine, but knowing the "hard cap" on my length of life would be nice as well.

I'm sure some would like it so they could plan their assisted suicide, many who have seen someone suffer alzheimer's would prefer not to, based on my conversations.

I would want to know as early as possible. Find a cure for it!

If there is no cure in my lifetime, then as an act of final service to humankind - study me. Use my data as progressive snapshots, the more snapshots there are, the sooner we find the cure!

People who are genetically predisposed to Alzheimer's have had similar experience, by taking genetic tests to check their variants.

https://www.nytimes.com/2012/06/10/magazine/an-alzheimers-ge...

People choose to be tested for Huntington disease, including many young adults who have recently turned 18 (in the USA). While, like yourself, I don't know what I would personally chose to do if faced with this situation, the availability of a specific test with a high NPV and low FP rate would be beneficial to have.

I would prefer early awareness just so I can be more attentive to potential early warnings signs. Though, this only makes sense if you have some degree of optimism that there will be more effective treatments available by the time genetics catch up with you.

Reply on news.ycombinator.com