What would you want to know following a Dementia diagnosis?

Approximately 9 million Americans currently have a form of dementia with an estimated 5.3 million of these people having Alzheimer’s Disease.

The greatest known risk factor for getting Alzheimer’s dementia is age. However, not everyone who ages, which is each of us, gets Alzheimer’s Disease.  What if you could be tested to determine whether or not you would get AD within the next 20 years?  Would you do it?  Would you want to find out?

The news coming from the recent International Alzheimer’s Conference in Hawaii was encouraging.  There is strong evidence that physicians will soon be able to tell you if you have the genetic markers indicating that you will get Alzheimer’s at some point in your life.

WOW! Great news, right?  Well, maybe yes and maybe no.

In order to find a cure for diseases like Alzheimer’s, researchers must first understand a cause-effect relationship for the disease.  Once understood, researchers can focus clinical research efforts on finding cures to the disease.

This is wonderful news.  The downside to having the ability to identify someone who has the “cause” part of Alzheimer’s Disease is  you have the ability to tell someone,  that he/she will get a chronic, debilitating, terminal disease which has no treatment or cure.  In other words, the good news is we know you are going to get Alzheimer’s so we can begin working with you, the bad news is there is no treatment or cure.

Stop and think about the progression for a minute. You feel healthy and mentally alert today.  You get a test and are told that at some point you are going to get this chronic disease.  We don’t know when, and when you do get this chronic disease, it can’t be cured.  Finally, there will be a stigma when you get the disease.  This is not the kind of news anyone would look forward to receiving.

So, would you want to know, and if so, why?  Would you want to know so you could appreciate and take advantage of the time you have.  Would you want to know so that you could do all the things you wanted to do before “it was too late”?  Would you want to help researchers find a cure?

Or on the flipside...

Would you not want to know?  Would you prefer that nature take its course and deal with it if/when it came?  After all, if you found out, you couldn’t do much about it.  Is there an upside to finding out?  (I guess the same question could be asked about any disease – would you want to know if you were going to get cancer at some point in your life; MS, etc.?)

Would you want to find out?