The law protects us against age discrimination when we pass our fortieth birthday—at least for employment purposes. We are up in arms when someone is discriminated against because they have an age disadvantage. We don’t think about how age discrimination can affect someone who is too young.
With early onset Alzheimer’s, discrimination works in reverse. This was pointed out in a recent Town Hall Meeting to discuss the National Alzheimer’s Plan.
At a meeting organized by the Alzheimer’s Association Southeast Florida Chapter, Laura Jones spoke of the lack of services for her husband, Jay, who at fifty years old, is too young to qualify for services in place to assist the elderly.
The Jones family story is one that any of us who have had a loved one with dementia understands. Almost all programs are developed to deal with Alzheimer’s only as disease of the elderly.
Alzheimer’s is not a normal part of aging, it is a disease. The vast majority of people with Alzheimer’s are sixty-five or older, but an estimated half million Americans develop Alzheimer’s before their sixty-fifth birthday.
When Jim was diagnosed with dementia, I left no stone unturned in my efforts to find a cure. I just couldn’t believe that he could have a disease that had no effective treatment or cure. It was our hope that he had a reversible condition. His Alzheimer’s type of dementia diagnosis came after a process of elimination. Once we received the devastating news, my next hope was to get him into a research program where a new, untested treatment might be the answer to our prayers.
We had our hopes up when he was able to enter into a trial for a new drug developed by Bayer. The small study was conducted by a neurologist in Columbia, Missouri. After discussing it with our sons, we began the process to enroll Jim in the study. Unfortunately, none of the study group finished the six-month trial when side effects brought the study to a screeching halt.
Regardless of the outcome from our initial experience, I watched for other studies. When I looked at the guidelines, one of the criteria for the larger drug trials was always—“must be older than sixty-five.” I saw news about innovative research where studies would be conducted across the country—the closest one was in Oklahoma. I knew it would be inconvenient, and I would have to take time off work, but I wanted Jim in that study.
Of course, it had the minimum age, but I decided to pursue it anyway. I talked to one of the researchers and explained that my husband was in his early fifties, but had been diagnosed with an Alzheimer’s type of dementia. Boy, was I flying high when he agreed to waive the age limit. Then, in the same conversation, my hopes were dashed over Jim’s problems with communication. Because of Jim’s aphasia, he would not have been able to answer the researcher’s questions necessary to measure the effects of the treatment.
There is probably no greater test for a family than to watch a loved one succumb to an incurable, progressive disease. I have never been prouder of my family than during the ten years of Jim’s disease when they hung in there providing love and support for us.
Jim was shy of his sixtieth birthday when he died. Monday will be a hard day for those who loved him and remember that he would have turned sixty-seven. Ironically, he would have met the age requirement for those services and research studies he didn’t qualify for in his lifetime.
I don’t think many of us consider sixty-five to be elderly. At least I don’t, but then I’m inching closer to that magic age every birthday. When it comes to being included in medical studies, there is no place for age discrimination.
Copyright © 2012 by L. S. Fisher
http://earlyonset.blogspot.com
