People with Down syndrome are particularly susceptible to dementia and Alzheimer’s disease. Now researchers are turning to those with the chromosomal disorder to identify new treatment options.
Johnson & Johnson is currently embarking on a three-year pilot study examining the early changes seen in those with Down syndrome as they develop dementia. And the effort could be just a sign of what’s to come.
Researchers say they would like to establish a much larger partnership between advocates, drugmakers and the government to track upwards of 1,000 people with Down syndrome from a young age in order to test treatments that may be able to prevent the brain changes associated with dementia.
The potential is huge, researchers say, given that dementia affects as many as 75 percent of adults with the chromosomal disorder.
“The study we’re proposing would provide insight into treating Alzheimer’s, but it might help individuals with Down syndrome as well,” one researcher told Reuters. To read more click here.
Disabled people are not here purely for the benefit of the non-disabled. Will any of this be used to benefit people with down syndrome, or are they expendible?
Based on the information provided, this does look disturbingly like one of those let’s-watch-the-disease-develop-and-not-offer-aid unethical studies. I’m not sure what help it’ll be to the subjects, so not thrilled by it either. (Especially the part about how they’re hoping parents will sign their kids up, and “eventually” they’ll try treatments against the Alzheimer’s. “Eventually” is wonderfully vague, no?)
That said, my grandfather on the one side rotted away in a nursing home bed after years of dementia, and my grandmother on the other side just got sent to a home, as the family is fairly far-flung and live-in caregivers have proven less-than-reliable.
I’m inclined to believe that Alzheimer’s & dementia generally might be termed disabilities, but then I’ve got a personal stake in the matter.
It sounds like this study will treat people with Down syndrome like guinea pigs in testing potential treatments for dementia. Most people with Down syndrome are unable to give consent or understand what they might be taking medications for. This does not look good to me.
The phrase “Potential Repeat Of The Tuskegee Experiment” comes to mind…
How convenient to proffer up our sons and daughters as guinea pigs to solve a problem for the “normals” with a research project that “might help” those with Down syndrome. Just another Band-Aid from the pharmaceutical industry. Curious how little opposition arises: oh, sorry, some of our kids can’t talk (or won’t), and the adults are often in group homes (where their medical decisions are made by Regional Centers), thus becoming the perfect “study” population. So inspiring, makes me want to run out screaming.
This was a reaction we had in the school system: oh, it’s those disabled kids, they have damaged immune systems…it’s not the school that could be making them sick (well it was — they hadn’t cleaned the air ducts since the school was built).
My brother had Down syndrome (DS) and developed Alzheimer’s disease (AD) in his mid-forties. He died of complications of AD at age 49. I am pleased to see studies that might offer people with DS the possibility of a life with the possibility of reduced incidence of AD, a most insidious disease. Prior to the onset of AD my brother had a very rich life and enriched the lives of those around him. Having DS was nothing in comparison to AD. Over the course of the progression of AD he went from being very independent to totally dependent. There was a loss of cognition, mobility and speech. He lost the ability to feed himself and was dependent on others for all self-help skills. Most disturbing of all was the transformation from a highly social fellow to a man who was agitated and combative, confused by the world and often appeared terrorized by simple things that he had previously enjoyed in life, like a good haircut. He deserved a better ending to his life and the opportunity to be spared of this most horrible disease. Do not be so quick to judge the motive of research. If those with DS have the potential to benefit from this research and the general population does as well, then that would be a great accomplishment for all. Spare other individuals with DS and those that love them from AD. I endorse this effort to eradicate AD. Stop viewing people with DS as victims in this process. They have a great deal to gain if progress can be made.