Presentations

Thursday, August 23, 2012

Age Discrimination Plagues Those with Early Onset Alzheimer’s


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

Saturday, August 11, 2012

Mirror, Mirror on the Wall


I heard on the news that a new survey indicated most people thought they looked better than they actually do. We have become a nation with the wicked queen attitude chanting, “Mirror, Mirror on the Wall, who is the fairest one of all?” No matter how beautiful you think you are there is a Snow White in everyone’s world.

In a way, you have to admire people with that much self confidence, but I can’t help but think about the ones that zoom in on their flaws. Anorexia can sometimes be blamed on the image a person sees when she looks into the mirror. She may be thin to the point of starvation and still see herself as an obese person.

Mirrors are not always our friends, especially for someone with Alzheimer’s. For a long time I didn’t truly understand how much trouble a mirror could be in a special care unit. Jim never seemed to have a problem with his mirror—in fact, he seldom looked in it. I combed his hair, washed his face, and shaved him, so he didn’t have any need for a mirror.

Then, one day as he passed in front of the mirror, he glanced into it. He started yelling, grabbed his head with both hands and rubbed his hair vigorously. Either he didn’t recognize himself or he was upset with the way he looked. We removed the mirror from his room.

Jim didn’t talk, but from conversations with other residents, it was obvious that most thought they were many years younger than their actual age. Most of the female residents in the unit flirted with Jim because he was the only one young enough to interest them. These women didn’t need a mirror to tell them they were young and good looking; they just knew it.

It is enough to make you wonder whether they see their image as a distortion of the real person they are inside. When a person has Alzheimer’s, it is possible that what they see is similar to what we see when we look into a funhouse mirror. Do you remember the short squat images, or the tall wavy reflections? In those cases, we could laugh because we knew it was not a true image of how we look. But what if instead of the familiar face we expected to see in a normal mirror, we saw the reflection of stranger? It would be like a horror movie come true.

Many Alzheimer’s units do not have mirrors in the rooms. If you take care of a person with dementia at home, you may have to cover or remove the mirrors.

No matter how we picture ourselves in our minds, we do recognize ourselves in the mirror. In the fairy tale, the wicked queen talked to the mirror, but I wonder what the mirror would say if it could talk back. In that extreme, she saw herself as the fairest of all. Some people focus on the negative when they look in the mirror. People with Alzheimer’s see strangers.

Copyright August 2012 by L. S. Fisher