A few weeks ago, my friend Shana shared a news story about a new type of brain scan that lets doctors see whether a patient is developing Alzheimer’s a decade before showing symptoms. (This test is important because the only way to know previously was through an autopsy. ) When Shana asked whether I would take the test, I responded that I was inclined not to since there isn’t a treatment at this point. This got me thinking – what would others do? So I did a random poll via Facebook to get their feedback.
Interestingly, most of my friends indicated that they would take the test. Here’s why:
- Heredity. “I would have the scan, because my great grandfather had it, my great aunt had it, both on my Mom's side of the family. My mom started taking Alzheimer drugs about 3 months ago,” DeAdra said.
- Planning. “While my selfish, ostrich head-in-the-sand self would rather not know, it's my responsibility to my loved ones to know what may be coming,” Teresa explained. “And while there is no cure yet, perhaps the drugs that work to reduce the effects could also delay the onset of full-blown Alzheimer’s.”
- Knowing what’s coming. Shana later said, “I've thought long and hard about this since original conversation, and as a result, I'm now off the hypothetical fence. My answer is yes, I would have the scan, pending I could practically afford it. Bottom line, I'm a realist -- an insanely curious one, at that. While I was totally able to handle the suspense of not knowing the sex of all three of our babies prior to their births, I think that was only because either result was a good one. In this case, being properly informed is being properly armed/forewarned. Now, as to what I would do with said result....”
Others would be interested in the test, but other factors would play into their decision to actually get it. These include:
- Cost. “I think if it was proven to be a non-invasive, easy-to-complete test, I'd consider it,” Brian said. “But if the hospitals-insurance companies-doctors-etc. need to charge $25,000, it's a pretty sure thing I wouldn't get tested just to cure my curiosity.”
- Insurance companies. “If the results are not reported to anyone but me, then yes, but if there is any chance of the insurance company finding out, then hell no,” Michelle said. “They will and can use it against me for future care. While it would be nice to know so that I could prepare for the future and long-term care needs, if it is shared with the insurance companies there goes that chance to be proactive.”
Although falling in the minority of respondents, some friends offered very good reasons why they wouldn’t get the test. These included:
- The burden of knowing. Kara said, “The burden of knowing that I would one day have Alzheimer's would cloud each day of my life. So unless I was already experiencing symptoms or there was a cure, I wouldn't want to know.” Inez concurred, “I think it's better to continue through life without the burdens of the future.”
- Panic when you forget. “I would not choose to have the test,” Jennifer said. “I know that for me, if I took it, every time I couldn't find a word I would be plunged into a panic-oh no, has it all begun? This is a very interesting question, though.”
All of my friends’ responses brought up good points and really got me to think again about my initial response. Here’s where I’m now standing: Unless there’s a drug that can stop this disease, I don’t want to take the test. And here’s why: Several years ago, I went to a presentation by Dr. David Snowdon who led the landmark Nun Study into Alzheimer’s. These researchers did a longitudinal study following a group of nuns and found that some of the sisters did not exhibit any signs of dementia while they were alive. However, once they died, an autopsy showed that their brains had severe plaque tangles that indicate Alzheimer’s.
So just because your brain may show tangles in a brain scan doesn’t mean that you will experience the consequences of Alzheimer’s. Therefore, I have to agree with Jennifer, Inez and Kara that taking the test and finding a positive result would put a pall on the enjoyment of my own life and make me worry about any memory slip. Furthermore, I would be afraid of the stigma that family members, friends, employers, and the medical community would place on me if those results become known, even if I never exhibit the symptoms of dementia during my lifetime.
So what would you do?
Published On: January 29, 2011