One of the more controversial subjects surrounding Alzheimer’s is whether or not it makes sense to push for early diagnosis. After all, this is a disease with no cure and no proven treatment, right? So, what good could come of knowing sooner than later?
A study recently published in the Annals of Neurology has found a link between the amount of mitochondrial DNA in one’s spinal fluid and the likelihood of developing Alzheimer’s. The research shows that asymptomatic patients as well as those already experiencing symptoms have lower levels of mitochondrial DNA, and perhaps most important is the fact that this can be detected up to 10 years before symptoms appear.
Professor Ramon Trullas, head of the study being conducted at CSIC Institute of Biomedical Research at Barcelona, explains that these findings could lead to viable treatment options in the preclinical stages – something that simply doesn’t exist today.
The medical community believes that the sooner treatment begins, the more likely it is that symptoms can be controlled or delayed. Imagine receiving a younger onset diagnosis in your 40’s or 50’s. For those families, truly in the prime of their lives, a few years can make a significant difference not only in planning and preparation, but in the amount of quality time they have together.
Clinical Trials and Support
Early diagnosis also allows patients to enter clinical trials much sooner, giving researchers an opportunity to study the brain in the earliest stages of the disease. The hope is that this early research will lead to treatments that can halt Alzheimer’s long before symptoms begin to manifest themselves.
Another important aspect of early diagnosis is that it gives families a chance to engage meaningful support from the very beginning. I believe that alone can be immensely helpful. With my mom, one of our greatest mistakes was allowing denial to take over.
I remember well how defensive she was; I never wanted to rock the boat, so we didn’t talk about it. Looking back, I think about how we could have handled things differently if we had faced reality at the first sign something was wrong. Building a support network would have been extremely beneficial.
More Questions Than Answers
At the end of the day, we all have to make our own choice. This is one of those situations where there’s really no right or wrong decision. Each of us is influenced by our own past experience, and although I had always been of the mind that I didn’t want to know, that changed as I watched my own mother slip away.
It will be interesting to see what happens over the next five years. Will insurance companies begin to cover PET scans and spinal taps to assist in the diagnosis of Alzheimer’s? If so, how many people will line up for the tests? Or will fear of becoming uninsurable force people to remain in the dark for as long as possible?
Lots of questions, not so many answers… I suppose only time will tell.
I would love to hear your opinions. Leave a comment to weigh in on whether or not you think early diagnosis of Alzheimer’s makes sense.
I don’t think they should be allowed to consider someone ‘uninsurable’ just because of the results of a test that may or may not be 100% accurate for a disease that will take an indeterminate amount of years to even manifest. That’s just wrong.
I think they should make it as easy as possible for people who are willing to get tested. I also think it should be the choice of each person.
Ann Napoletan said:
I agree on all counts! Thanks so much for commenting! ~Ann
Linda McCarty said:
What is the point of early diagnosis? So one can live with this cloud of doom hanging over his head that much longer? “Ignorance is bliss” may apply here. I would rather be blissfully ignorant for as long as possible and man up at the last possible moment. This would be the voice of experience. I took care of my husband for 5 years before he died from this wretched disease. The feeling of impending doom after I knew was horrible.
Ann Napoletan said:
I’m so sorry for the loss of your husband, Linda. It’s a horrible, horrible disease… “wretched” is the perfect word.
Each of us is shaped by our experiences. I can’t really put my finger on when I changed my mind. Not all that long ago I was adamant about not wanting to know…it’s really just in the past year or so that I’ve felt otherwise.
Thanks very much for sharing your thoughts.
Karen Middleton said:
Everybody has the right to know what’s happening to them, early on people may be very aware something is wrong I cannot imagine how scarey that must be, that said it is definitely an individuals choice to find out what is happening or not. There are also many other illnesses that mimick dementia many of those illnesses are treatable/cureable once detected. The option of delaying drugs and the opportunity to plan for the future are paramount to living well with dementia. Early diagnosis is a definite for me however receiving the right support must go hand in hand.
Ann Napoletan said:
Karen, thanks for commenting. I agree – support is such an important part of this journey. I think we, in the U.S., have a lot of work to do in that regard. A big part of it is getting a national dialogue going to help remove the stigma that surrounds the disease. You also make a great point about treatable illnesses that can present much like dementia. Just the other day, I was reading about Normal Pressure Hydrocephalus, which is one of those that is easily misdiagnosed.
Kelly Byrne said:
Early diagnosis for sure! Every option could be explored and a weight lifted off the family and diagnosed person.
Ann Napoletan said:
Thanks for commenting, Kelly. Definitely a personal decision, but whichever side of the fence people are on, one thing is for sure – they’re passionate about their choice and the reasoning behind it. Difficult, difficult topic.