liv: oil painting of seated nude with her back to the viewer (body)
[personal profile] liv
Both our internal information people and the local press are getting very excited because some Karolinska people have made some pretty good progress towards developing a test that will predict dementia 20 years ahead. [Press release, with links to the original article] It's cool science, no doubt about it, but I can't help wondering, would you want to take a test at the age of 50 that might predict that you had a high chance of being senile by the time you were 70? I guess it's the same problem as with any predictive medical testing: in the absence of a cure or even sensible prevention, what's the point of knowing?

I think it's the timescale that bothers me, in part; I don't have the same objection to, say, cervical smears which tell me whether I might be at risk for cancer in the coming few years. That allows me to do something about it in terms of possibly readjusting my life plans. But I can't plan on the basis of some terrible thing that might happen in 20 years' time; I'd just have to live with the knowledge that this was likely to happen to me, which I don't think would be good psychologically.

It's true that almost everybody expects to be mortal (the exceptions are a few religious people and a few quasi-religious geeks who think the Singularity is going to cure death). So you always have to run your life on the basis that you have a few decades at best and possibly even less. But I'd still rather not know the probable time and manner of my demise more than a few years in advance, I think.

In non-morbid news: Stockholm is full of magicians and flamboyantly gay people with rainbow banners at the moment. I find this very cool, it's a bit like living in the Paul Gallico novel The man who was magic.

(no subject)

Date: 2006-08-04 07:37 am (UTC)
From: [identity profile] quizcustodet.livejournal.com
There are a couple of legitimate uses, I think. Many people don't save enough for a normal retirement, let alone one that requires expensive in-home/residential care like dementia; this might be a wake-up call to such people. (Of course, people who are so disorganized about retirement are likely to fail to take the test, too.)

I have also heard the opinion expressed by some people that it would be better to be dead than to be senile - they can then make suitable arrangements in advance, to be put into place when they notice the onset of senility.

(no subject)

Date: 2006-08-07 09:12 am (UTC)
From: [identity profile] quizcustodet.livejournal.com
I entirely agree with you about the dubiousness of the 'I'd rather be dead than' arguments personally. I included it basically on the assumption that at least a small number of the people expressing such opinions might have thought it through and be entirely sincere in their conviction. Fortunately, I don't think this is an application that is ever going to be strongly developed - it's just a conceivable use of the results of the test.

live as complete hedonists

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Re: live as complete hedonists

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Re: live as complete hedonists

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Date: 2006-08-04 08:13 am (UTC)
From: [identity profile] lavendersparkle.livejournal.com
I don't think that most people really realise that they're mortal*. It could be a really life affirming wake up call of 'You've got two decades left; don't waste them.' There may also be people who have a history of dementia in the family and so already think their going to get it and the test will either just confirm their suspicions or give them relief from the expectation that it will happen to them.

*It reminds me of an anecdote from an HIV positive comedian who said that he was doing stand up and said "I'm HIV positive. Do you know what that means?" and someone yelled "Yeah, you're gonna die." to which he replied "And you're not? Ladies and gentlemen we have Jesus at the back of the audience!"

(no subject)

Date: 2006-08-09 08:24 pm (UTC)
From: [identity profile] rysmiel.livejournal.com
I don't know. On the one hand it feels to me that I am very, very conscious that anyone can walk under a bus tomorrow. On the other, my ethical structure for living my life does entail making long-term plans. In hope, rather than confidence, that they can come about.

I know nobody I care about will ever be lost without knowing that I care about them. Communicating that is probably the biggest thing in my day-to-day behaviour that's directly informed by awareness of mortality.

(no subject)

Date: 2006-08-04 08:17 am (UTC)
From: [identity profile] lethargic-man.livejournal.com
Well, as the article itself points out, if you know you're at risk, you can start taking medicine earlier and delay the onset of the disease.

I read the other week about a whole family, who had a genetic predisposition to stomach cancer in their fifties, who all had their stomachs removed as a prophylactic measure. That's a hell of a decision to takeā€”rule out eating normally for the rest of your life against the (likely) probability of stomach cancer years if not decades in the future.

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From: [identity profile] lethargic-man.livejournal.com - Date: 2006-08-06 12:43 pm (UTC) - Expand

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Date: 2006-08-04 08:45 am (UTC)
From: [identity profile] syllopsium.livejournal.com
There are steps being made towards prevention of dementia and suchlike - supplements that boost chemicals thought to improve memory retention and suchlike. The problem is that no-one knows the long term effects; thus it might be sensible for those with high risk to take the supplements.

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From: [identity profile] syllopsium.livejournal.com - Date: 2006-08-06 02:52 pm (UTC) - Expand

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Date: 2006-08-04 10:41 am (UTC)
From: (Anonymous)
A few decades or less strikes me a tad optimistic - living in a place surrounded by crazy drivers has made me reconsider my projected life expectancy. On the plus side, its a near religious experience to have just avoided being flattened by another vehicle....

(no subject)

Date: 2006-08-04 02:06 pm (UTC)
ext_1771: Joe Flanigan looking A-Dorable. (Default)
From: [identity profile] monanotlisa.livejournal.com
Think I wouldn't want to know; how to ever shake this knowledge?

But as you say, cool science.

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From: [identity profile] monanotlisa.livejournal.com - Date: 2006-08-06 11:55 am (UTC) - Expand

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Date: 2006-08-09 08:27 pm (UTC)
From: [identity profile] rysmiel.livejournal.com
How is it knowledge on a different scale from knowing you have a finite lifespan anyway ?

To my mind they're the same philosophical/emotional problem, with the same solution that works for me.

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From: [identity profile] monanotlisa.livejournal.com - Date: 2006-08-09 08:30 pm (UTC) - Expand

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Date: 2006-08-04 03:03 pm (UTC)
From: [identity profile] adrian-turtle.livejournal.com
My mother watched both her parents die of Alzheimer's disease. It's not clear to me how much that overlaps with the "dementia" in the article. As soon as there was a test for the genetic marker for early-onset Alzheimer's, my mother wanted to have it. She lives alone, and she's terribly anxious. When a woman in her fifties (who is tempermentally inclined to obsessive worries) starts to become a bit forgetful, how can she tell if it's just normal forgetfulness or the beginnings of something more serious? They tell everyone, "Forgeting where your keys are is normal. Forgeting what keys are for is Alzheimer's." But my mother's house is full of things that *I* couldn't tell you what they were for -- it's not that I have dementia, it's that I'm the wrong kind of geek.

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Date: 2006-08-05 12:43 am (UTC)
From: [identity profile] leora.livejournal.com
I am big into long-term planning. I would want to know.

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Date: 2006-08-05 03:19 am (UTC)
From: [identity profile] usuakari.livejournal.com
I'm with [livejournal.com profile] lavendersparkle. I think it really could be a stimulus for living and decision making. A very concrete justification for really working out what 'living' means and doing it, as much as a predictor of doom and warning to take action now.

The press release is pretty vague on the detail about the predictive power and accuracy of the risk score though. While I'd want to know myself, I'd want to know with some certainty. Being told that I had 5% chance of developing some form of vascularly-caused dementia wouldn't be especially useful (and what is the general chance anyway I wonder?), but being told there was an 80% chance I'd lose my marbles due to a string of CVAs would be a different thing. I'd take the Sword of Damocles then, rather than not know and not be able to plan.

On the subject of dementia, you may be interested in a href="http://www.abc.net.au/worldtoday/content/2006/s1694969.htm">this. The company's press release is here (http://www.pranabio.com/company_profile/press_releases_item.asp?id=107). I'm amused at the coincidence of the trial taking place in Sweden. :)

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Date: 2006-08-05 11:52 am (UTC)
ext_3375: Banded Tussock (Default)
From: [identity profile] hairyears.livejournal.com


Predictive tests would be wonderful if they gave 100% certainty but, in reality, the results give anything from a 90% probability to 'double the risk in the general population' of a very rare condition.

At 90%, the test result is usable information: I'd start making arrangements: nursing homes, do-not-resuscitate contracts, and a veto on pension plans that involve annuities or long maturities.

At 50%, the test result is a curse because I can't use the information. At least, not at current levels of medical knowledge for dementia. Heart disease would be a different matter, even at a 20% risk forecast - I'd make radical changes to my lifestyle, rather than the general preference for a healthy diet and exercise that is my current lifestyle strategy, and I'd get regular check-ups.

Of course, at even 2%, the information would be used for me by insurance companies. O rather, against me.

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Date: 2006-08-07 02:53 pm (UTC)
From: [identity profile] cartesiandaemon.livejournal.com
I agree that the press being excited is a bit barking up the wrong tree. Though if I know there's an easy test, it'd be hard to not take it, even if in theory I'd rather not know.

What surprised me most is it wasn't biochemical, but about your current body and lifestyle: does that mean your sedentriness etc contributes to dementia? Or comes from the same cause? *That* seems a very useful observation, for potentially finding out how to prevent it.

(no subject)

From: [identity profile] cartesiandaemon.livejournal.com - Date: 2006-08-24 12:42 pm (UTC) - Expand

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