Early tests for dementia (no cure) WDYT?

AnnHiggins

so i read this article today -

https://www.abc.net.au/news/2021-05-25/dementia-diagnosis-with-simple-blood-test/100164184

in short, there is a blood test being developed that could diagnose dementia in a person very very early on - before the onset of the usual symptoms - people could theoretically be in their 50’s and get a diagnosis of dementia. Now, in theory of course, this is a good thing, isn’t it, early diagnosis is always good BUT there is no cure (as of now). so it’s not like some cancers where they say “if we get it early the outcomes are good” - the person is still going to have the inevitable slide into dementia.

DH thinks it’s still a good thing - his mother had Lewy Body dementia - diagnosed quite late in the progression of the disease - it was really really awful - she didn’t have the mental faculties to accept and deal with her diagnosis, she straight out refused to go into care when she badly needed it….she ended up being admitted against her will and it was just…awful. all round. DH said had she been able to be diagnosed earlier she would have worked through the diagnosis, accepted it, got her affairs in order - and (he thinks) ultimately would have gone willingly into care. I’m not so sure. i remember the 5 or so years before the worst of her symptoms presented - sure, there were quirks about her - but she loved life, she had a rich social life, she was a very funny woman - always holding court at dinner parties - she travelled - and i just think - would she have enjoyed those later years, before her condition worsened, if she had that cloud of knowledge hanging over her head? was she better off not knowing? would you prefer not to know (if there’s no cure)?

MizHops

I tend to agree with your DH on paper but emotionally I’m not sure I’m convinced either. I guess I’m a bit of a fence sitter here.

Although, DH’s exercise physiologist is very passionate about diet and exercise being crucial in managing and preventing dementia, so maybe it would delay the onset, or lessen the severity in some cases?

DYNAR

MizHops

Interesting you say about exercise. I listened to a Ladies We Need to Talk episode last week that talked about even a daily walk helping to stave off mental decline.

WidowWyncke

If it can’t be treated I’m not sure I’d want to know.

Sabrina

Personally for me I think I’d rather know because I’m kind of a hurry up and rip the bandaid off type person. If I know something is bad then I want to know exactly how bad and what happens and when, I need to know all the things, no matter how shit they are. It’s kind of like a control thing for me, knowing yes this is shit but it’s happening and I know what’s coming so I can try and mentally prepare for it. For me the unknown is the most scary thing.

My mum is actually the complete opposite. She doesn’t want to know anything bad because it just makes her freeze and she can’t move out of that frozen place, there’s no value in the information for her, so I definitely know what you mean by not being able to enjoy the present if you find out and can’t change it. I think you’d have to weigh up how you process information to work out whether it’s better to know or not know.

AnnHiggins

yes, interesting about exercise - certainly if you could delay the onset, then i can see the merit in knowing. it’s a tough one. A friend of ours died a few years ago from a brain tumour - it was incurable although he did get treatment for it which may have prolonged his life - he and his wife took their kids out of school, went on a big trip - at his funeral they ran a slide show - not in chronological order - but you could just tell the photos post diagnosis - he was smiling (like when he was on the trip with his kids) but not smiling - you know? there was a cloud.

Woohoo

I thought they could already show whether or not you would be likely to develop alzheimer’s via genetic testing?

Personally, with no cure in sight I certainly wouldn’t want to know now (I’m in my 50s). From watching both my parents deteriorate and die (not dementia, but some pretty confronting stuff – one- of my grandparents had a long slow deterioration with dementia though) my view is that aging and death are generally messy. There’s no easy way through in a lot of cases and you’ve just got to take the good moments and hopefully keep those as your best memories. We want nice neat outcomes for most things in life. It’s rarely what we’re given. I’m with you, I think the shadow over your MIL’s life might well have been unbearable for her and would not have necessarily led to acceptance.

WidowWyncke

How much in advance though,30-40 years of wondering when it will happen?

catbus

I guess one good thing would be people would have time to seek a place where assisted dying is legal, if that’s what they would like to do rather than slowly deteriorate. And they’d still have the cognition early on to be legally permitted to make that decision.

RichardParker

My brother has a heart condition that means he could die at any moment. He’s now in his mid 40’s. He’s known since he was an early adult, and I think that’s too young to have information like that, because I think it contributed to risky behaviour which has reduced his quality of life.

But if I was in my fifties, for e.g., and could be made aware of a potential problem with brain function, it might make me much more likely to get my affairs in order - to make provision for later-life care so that my relatives weren’t overly burdened with having to make tough decisions. But not too early so that it ruins the naïveté of youth.