Did I hear that correctly? A 19 year old has been diagnosed with Alzheimer’s? I was shocked. I immediately thought, well, okay this is obviously a case of Early-Onset Alzheimer’s but I had never heard of one beginning so early. The next thought was that the cause must be genetic. Another consideration was that he must have been engaged in dangerous activities that damaged his brain. I remained skeptical wondering what kind of activities could maintain that amount of continually repeated head trauma to one only 19 years old to result in a diagnosis of Alzheimer’s. It did not compute in my unschooled brain.
This I had to check out and was led to a Study in the Journal of Alzheimer ’s disease which gave details of the case.
The confirmation added a profound sadness to my shock. Here was a young man on the cusp of manhood whose life, hopes and dreams were all ahead of him now stymied by this deadly disease. Instead of moving forward to a bright future he would now be regressing to the inevitable end. Would he live long enough to receive the first known cure for the disease? The more immediate question is would he be able to take advantage of any cure that may emerge given the unpredictability of the progression of the disease?
General opinion is that only old people get Alzheimer’s. It should be noted that old age is not a cause of the disease but one of the markers. The older you get the more susceptible you are to contracting the disease. Early-Onset usually refers to those who contract it at younger than 65 years of age. But being diagnosed at 19 is rare, actually non-existent until this case.
I thought of the parents. If your child complains of being forgetful at age 17 Alzheimer’s would be your last thought. Any number of issues facing a teenager could be the cause of the laziness of the brain. It could be a growth spurt, suddenly raging hormones, lack of sleep or perhaps a creative excuse for a bad report card. None of these seemed to be a factor here. I would guess that a pediatrician given this symptom would not have Alzheimer’s top of mind, if at all. It took two years for the diagnosis of probable case of Alzheimer’s to be diagnosed. What was more frightening was that there were no markers to indicate that this was caused by genetics, a more acceptable and plausible explanation.
No doubt this teen will be studied in minute detail, every change in his behaviour scrutinized to the nth degree. His parents will not only have to grapple with the diagnosis but also find the empathy and strength to watch as he becomes a human guinea pig. As critical as it is to find out how this adolescent contracted the disease it will also be an agony for them to see the slow deterioration and watch as researchers learn from him.
Alzheimer’s has stretched out a long arm to touch a teenager. In so doing we must rethink the pathology of the disease. I have felt deep sympathy for fellow caregivers whose spouses died at 47 and 52 years of age. The feeling is that they died much too young and that was after living with Alzheimer’s for a number of years. I could empathize. I could find words of comfort as I went through my own caregiver’s journey. What do you say to a parent whose teenager has Alzheimer’s?
I hope these parents will record and celebrate the moments of joy that come with living and caring for a loved one with Alzheimer’s.
The Meander: On behalf of all persons living with Alzheimer’s and their caregivers, a big thank you to the parents of this young man. I hope their love and sacrifice and some diligent research will result in a positive outcome that advances knowledge and greater understanding of the disease. I also want to remind them that they are not alone.