Edge-centric

As in -- shouldn't this just be common sense?

But no; researchers had to study 6,000 people with dementia who were living at home with their families or "caregivers." And what they learned -- but you should read the article yourself -- was that "that caregiver characteristics, including their emotional state, could contribute to neuropsychiatric (behavioral) symptoms in dementia patients."

Well, duh!

It seems to me a sad indication of the state of affairs that such a belief isn't simply accepted as a given, but has to be "studied" to confirm.

"The researchers found that younger caregivers reported significantly more behavior problems than older caregivers did, suggesting that caregiver age alone may affect a patient's symptoms."

This is an interesting point. One would likely have to poke around in the study itself to unravel some of it. Were there actually more "behavior problems?" Or was it that the younger "caregivers" made more of behaviors that to them seemed like "problems"? Did the paranoia and restlessness, the "wandering and combativeness" disturb them more than it did older workers looking after someone with dementia? Did the younger folks interpret as paranoia something that a worker closer to the "patient's" age might have not viewed as such? Were older workers, in other words, simply more sanguine about these things? Or did the younger folks exacerbate the behaviors?

All of this is possibly -- likely -- revealed in the discussion in the actual study, but it is, alas, not revealed in the press materials.

When you read the press release on the study, you might also be struck, as I was, by the number of times the researchers made the point that they were not "blaming the caregivers."

So, were they blaming the victims -- the people with the dementia (almost certainly most of them elderly, although the press release doesn't mention that)?

"We are not trying to blame caregivers, but to better understand the complex puzzle," one of the researchers said. "If we focus only on the patient, we're not going to solve the problem. We need to develop better, non-drug treatments to handle these behaviors, and more tailored caregiver education may be one answer."

When I read that statement, I thought to myself, "this is an odd way, almost an apologetic way, of going about things."

It's high time -- actually, way past time -- for a lot of problems in disabled person/worker relationships to be examined with an eye to whether much of it isn't caused by the worker. (Do you notice how I keep avoiding the word "caregiver"? More on that in a moment.) But the press statement, at least as I read it, seems to be replete with a kind of bending over backwards to be very careful making this point. The researchers are indeed to be commended for trying to start to shift the examination of the "problems" caused by things like Alzheimers, to shift it away from the "Alzheimer's patient" and onto other things that quite likely do, if not cause, surely exacerbate things like paranoia. Other things -- such as the way they're being treated, perhaps? By the folks "caring" for them? Geez, what a clever idea! (Sarcasm intentional.)

I'm curious about the political climate in which this study was done and released. Was there something going on that occasioned the phrasing of all of this in a way not to blame "caregivers?"

Maybe I'm reading too much into it. Maybe it was entirely unintentional. That to me says even more about our lockstep tendency to blame the victim and see the "caregiver" as blameless in so many cases. Particularly when the "caregivers" are family.

A Diversionary Rant

OK; enough pussyfooting: I loathe the term "caregiver" and go out of my way to find every opportunity to avoid using it. Or I try to change it. With varying success: some of my alternate locutions seem odd even to me.

The words "caregiver" and "caregiving" have become so accepted in our culture that nobody even thinks of whether it's the best or most accurate way to phrase things. Most people couldn't care less, I'm sure.

At one time way back in the Dark Ages of the disability rights movement (for you newbies, this means the late 1970s and early '80s) there were lots of crip activists who hated the term and the concept, too, and insisted on a new phrase: "attendant services" or "personal assistance services." The term grew wihin the burgeoning disability rights movement -- or the part of it we then termed the new "independent living" movement. But, alas, it appears now that it was much like the proverbial tree that fell in the forest: nobody heard it, so it didn't exist, as far as the "real world" was concerned.

Nearly three decades later, nobody much anymore beyond us diehards use the term "personal assistance services" -- nobody outside the core of the "independent living" movement even knows what it means. (Ditto, by the way, for "independent living": in a truly Alice-in-Wonderland move, the nursing home industry simply appropriated the term to mean congregational housing run by agencies like nursing homes. So much for "independent living.")

I'm almost done with my Diversionary Rant here. I'll be done completely as soon as I ask you to watch your local news media for the next reference to "independent living." If, perchance (but not likely), the reference is to an independent living center, the reporter will be compelled to identify what that creature is, since, still, it's assumed (correctly, no doubt) that nobody knows what one is.

End of Diversionary Rant.

To understand more of my ire against the term "caregiver," read my article The Care Juggernaut.

And don't even get me started on the use of the word "patient."