December 18, 2010

"Since there is no treatment for Alzheimer’s..."

"... is it a good thing to tell people, years earlier, that they have this progressive degenerative brain disease or have a good chance of getting it?"

30 comments:

AllenS said...

Yes, it is a good thing to know. Better to start planning simple things like a will, and taking care of business before you're unable to do so. Been there, seen it.

Bob Ellison said...

A wise woman whose memory is as bad as mine once told me we shared an advantage, because nobody will ever know if, and, or when we get Alzheimer's.

Roger J. said...

There was a simple test a while back--published on the internet--that purportedly could predict your likilhood of having alzheimers--when we discussed the test with friends, most said they would rather not know.

Although, I do agree with Allen S's comment above.

I think Alzheimer's is a terrifying thing and I honestly do not believe I would want to know while I was in full possession of my faculties.

DaveW said...

My memory has gotten noticeably worse, especially since my heart surgery. I intend to talk to the doc about it next time I see him.

If it is early Alzheimer's would I want to know? Of course. I need to arrange my life around it if that's what's going on and my wife damn sure needs to know.

bagoh20 said...

We waste so much of our lives, that anything reminding you that your time will run out is a good thing to know.

Roger J. said...

I should make explicit that my results had absolutely no scientific validity--totally anecdotal.

the larger question, I think,is that were there a good test that could predict onset of Alzheirmers, how many people would take it and what would they do with the results?

I fervently hope research continues and we reach some medical understanding of how to treat the disease--there seems to me to be nothing worse than lapsing into a condition where our accumulated memories are obliterated and that our loved ones have to watch us in our downward spiral.

Pogo said...

AllenS is right. Financial and legal planning is possible and necessary while you retain cognitive function.

AllenS said...

Roger,

It is a test that you might want to take when you turn 60, 70, or whenever you feel (or your loved ones notice) that something about your memory and ability to say "no" when you mean to say "yes" happens all too frequently. I see no need to take such a test when you're in your younger years when you can function.

Conservatives 4 Better Dental Hygiene said...

I think we should just tell such people to be prepared to lead the free world in a glorious fight-to-the-death against communism!

And if you don't remember selling arms for hostages along the way, no biggie! Blame it on the colonel!

Penny said...

"No Treatment for Alzheimers"

THANK GOD!

Do you have one clue how long it takes to sue for a medical disability, mister black man?

SpinningStar said...

If there is an accurate test, would we be able to get it without the results going into the official record so others will make decisions for me?

I would prefer living my life not knowing when I was going to cease being - whether it is my last breath or my last thought. Isn't it better to live but always be prepared, just in case you might die tomorrow?

It would be good to have a close advisor to know where things are and what your wishes are, but who else do you want to know?

Ken Pidcock said...

Of course, the horror show example of this is with Huntington Disease, where you can find out when you're 18 and there's no maybe. Many debate the value of promoting HD testing for young adults. It's suggested that it could have family planning value (in this context, family planning means eugenic), and that it aids research into the disease; if you know you're going to have it, you are a useful subject for monitoring its progression and testing interventions.

Running through all of this, no matter what the disease, is realization that choosing not to know when you could know runs, in Nancy Wexler's words, [a]gainst the prevailing ethos of our society that knowledge is power and that both are good...

Conservatives 4 Better Dental Hygiene said...
This comment has been removed by the author.
Conservatives 4 Better Dental Hygiene said...

Sorry Nancy. My apologies for that last one!

kent said...

"... is it a good thing to tell people, years earlier, that they have this progressive degenerative brain disease or have a good chance of getting it?"

Joe Biden's tough. He can handle it.

edutcher said...

I was going to say, "No", since it's a little like giving someone the date and time they'll die. You would start obsessing over every little thing years out. There's a little in my mother's family, but almost everyone died from heart, so it's hard to tell.

AllenS' point, however, is worth considering. The idea of planning (which ought to be done anyway) is a good thought and you would tend to hold the time you have a little more dearly.

mrs whatsit said...

Since these tests are not truly diagnostic, in the sense that they can predict the disease with certainty, I don't see the point in using them for anything but research. An Alzheimer's diagnosis is painful; still worse is an incorrect Alzheimer's diagnosis. Some years ago, a dear elderly relation of mine developed short-term memory issues. Her family doctor referred her to a neurologist, who examined her, administered some memory tests, and told her that she had Alzheimer's. It broke her heart. "No one should ever be given such news," she said to me, weeping. After that, fear and foreboding and sadness darkened year after year for her and her family, while all of them should have been enjoying her otherwise healthy and prosperous 80s. Now she's in her 90s and, although the short-term memory issues persist, they have not grown much worse. Last year the neurologist reluctantly acknowledged that he was wrong; whatever is causing her forgetfulness, she does not have dementia, and she does not have Alzheimer's.

Who's going to give her back the happy, hopeful years she lost?

SteveR said...

I am in the midst of a disease, M.S., that had I known where I would be at my age now (53) many years ago, I certainly would have done things differently.

But the course of these things are not so easily predicted, there's a risk of overreacting. Yes, I would want to know.

Instugator said...

But there are "treatments" there just is no cure. My grandmother realized that she had a "problem" when she could no longer remember what a green light meant. Her doctor put her on Aricept. That was 1999 and she continued to live on her own until 2007. She passed away this August, but until then she could have been the poster-child for that drug. Knowing there was a problem, however, enabled a significant amount of estate planning to occur with the result that each major change - moving from her house to my Aunt's (900 miles), then to a nursing home near my mother (1250 miles)- was handled relatively easily. Knowing gives you the opportunity to plan .

Ignorance is Bliss said...

I sometime wonder if I should develop rigorous habits now, while I'm in my 40s. ( where I put my car keys, addresses and phone numbers, routine consulting of a written schedule, etc.) That way, If I develop Alzheimer's in my 70, I will have 30 years of habit to lose before I forget these things.

WV grack - I am so team Word Verification

Lucius said...

The best reason to know if you're going to get Alzheimer's...

It's great fun to get indignant when the self-righteous health scolds inevitably try to lecture you about diet and exercise!

With my family history, the odds of my developing Alzheimer's or senile dementia approaches 100%.
Why would I want to be a burden on my kids?
Why would I want to punish myself in pursuit of a longevity that neither I, nor anybody else, will enjoy?

Life has sharp edges, and it inevitably ends.
Put on your big boy pants and deal with it.

Ignorance is Bliss said...

The other thing I should do is take pictures of my children now, run them through software that shows what they will look like in 30 or 40 years, and memorize those pictures. That way I'll recognize my own children.

bearing said...

Huh, let me see. A person comes to a doctor. presents proof of insurance or otherwise arranges for the doctor to be paid for his services and says, "Doctor, please examine me, diagnose me and tell me if you find anything wrong."

*blinking and waiting to figure out why this presents a moral dilemma*

How much more patronizing can the medical profession get?

(Yes, I'm still bitter about the doctor who waited six months to tell my 53-year-old mother she had 18 months to live....)

Bruce Hayden said...

I think that it really depends on the person and the personality.

A friend of mine made sure that her father never knew that he had Alzheimer's, because of a fear that he had the personality to kill himself if he faced it. And, she may have been right, because of all the kids in her family, she is probably the most like him. It is almost a decade later. They were able to stabilize it for maybe 5 years with surgery, but then he is now sliding again, and likely couldn't remember it, if told now.

But there are those, like President Reagan, who can accept the diagnosis with grace. I would like to think that I am in that category, but won't know until I have to face such a decision.

So, I am working backwards to the question. There are people who would handle being susceptible to such a disease well, and there are those who would not. If it would mean that they plan better for the future and their loved ones, and take whatever precautions might be useful, then I would say, sure. But, if they are the type to obsess about every missed date or fact, then maybe not. Some memory loss as we age seems inherent to our condition as humans. My father is nearing 90, and doesn't remember as much as he did when younger, but obviously doesn't have Alzheimer's.

As a note along these lines, I am visiting this afternoon a guy who developed Day Clocks, which are clocks that tell the day of the week. They are aimed at retirees who lose track of such when no longer facing the constraints of a work week. I joked yesterday that I should bring one of those clocks back to the office, since half of us are late 50s or older. But, I am definitely getting one for my father for Christmas. After all, what do you buy someone who has had everything he needs for a long time now?

PatCA said...

I don't know if I would want to know...it's always good to plan, though.

I think these issues are the big unintended problem inherent in our new longevity. How many people past 80 or so are competent to manage their own affairs, for instance? I think at 80 I'll start smoking and drinking.

MadisonMan said...

I would want to plan things out, and finish things up. So yes, tell me.

Pogo said...

Tell you what?




(dementia humor)

jr565 said...

Sure because there are things you can do to reduce the likelihood that you get it.

traditionalguy said...

These folks need protection from strangers and from family too. But they are the hardest to work for because they are usually believed when they make up a new story about some lawyer or doctor that helps them. You need to videotape interactions with them, and even then it is dangerous to do. Thay are perfectly rational and make decisions...that they cannot remember at all 8 hours later. Think that one through.

Ken Pidcock said...

Having lost family to neurodegeneration (my mother to PSP, my father-in-law and a sister-in-law to HD), I understand the challenge to helping people who are troubled when reason is of no use.

I found this March RadioLab episode heartwarming.