The Latest "Duh!" Study

Today over on Ragged Edge we feature the latest "Duh!" Study I've run across, courtesy of Dave Reynolds of Inclusion Daily: Study: In-Home Worker Traits Could Increase Dementia Symptoms. "People with dementia seemed more paranoid, 'combatitive' when the in-home worker was young, poorly-educated," the researchers learned.

This qualifies as a "Duh!" Study because the reaction one has to reading about it is, "Well, duh!"

As in -- did we need a study to figure this one out?

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."

May 31, 2006 | Email this story


Comments (newest comments at bottom)

Not to be a dope, but I don't really understand the last paragraph of your rant. But I do understand you point about "caregiver." Having been a "caregiver" myself I dislike the "savior-like" quality that this word seems to posses in people's minds. It just makes no sense that because we are providing a service that only a certain percentage of the population needs that we should be though of as any better than anyone. We all have the choice to work anywhere to get our money, we choose this, it is not forced on us, we are not required, we choose it. I see no one praising the guy behind the grill and McDonald's or Burger King. And I happen to think that guy gets a lot less out of his job than I do out of mine. Maybe I'm missing the full point, it's entirely possilbe, but I do understand what you mean about it being a ill-used word.

Posted by: Matt on May 31, 2006 10:17 AM

Okay, Madame, once again you've beaten me to my comment with a much more poignant rant. I'll take to browsing the right column of the main page first from now on. Duh.

Posted by: Evonne on May 31, 2006 02:13 PM

Ironically the "Independent Living Center" has become just another social service agency to contend with as ILCs keep people dependent on the center for services.

Don Roberts

Posted by: Don Roberts on May 31, 2006 03:31 PM

Hi, Matt --

If you haven't, by all means do read "The Care Juggernaut". Mary links to it above. One of my all-time personal favorites, and it may clarify some of the things you've been questioning. Peace out.

Posted by: Evonne on June 1, 2006 10:25 AM

Matt, above, comments, "I don't really understand the last paragraph of your rant."

I wrote, "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."

What I meant is this:

"Independent living centers" are not very well known. Actually, most people don't know about them at all. Reporters and editors don't seem to know about them, either. Most larger communities have an independent living center; many have existed for decades. But reporters and editors, as I said, don't seem to know much about them. Or maybe they think their audience doesn't know much about them.

So, when media do a story that includes something about an independent living center, they feel like they have to identify it and explain what it is -- because they believe most people won't know what they're talking about otherwise.

I "ranted" about this because it seems to me that this is a good example of how little the terms we in the disability rights movement use have been picked up and understood by the larger society.

Here's an example that may make it clearer:

Recently, there was a story in my paper that featured a quote from the director of a well-known agency, an agency which takes in abused children and serves as a temporary home pending foster placement. The name of the organization is "Home of the Innocents." The sentences in the article went something like this: "We are seeking more funding," said Joe Blow, director of Home of the Innocents. "We hope to approach the state legislature later this year. . . "

Notice that the newspaper article did not "explain" what "Home of the Innocents" was -- the paper's editors believed the agency was well-known enough that it didn't need an explanation.

But more often than not, when you see a story like this about an independent living center, you'll find the sentence reads a little differently: "We are seeking more funding, said Jane Doe, director of the Anytown Independent Living Center, an organization that helps disabled people. "We hope to approach the legislature..."

See that extra phrase in there after "Independent Living Center" -- the phrase that tells readers what the organization does? That's in there because editors believe that most people won't know what the Anytown Independent Living Center is. In fact, often the identifying phrase leaves a false or skewed impression of what an "independent living center" actually is, but it reflects what the reporter or editor believes it does.

Watching stories for such "identifying phrases" is often a way to gauge how well-known a group or agency is.

Over the years, I've found that stories that include a reference to an independent living center almost always carry this additional identifying phrase, suggesting to me that in most places, even today, independent living centers are not very well known or well understood. Even by reporters or editors.

I hope what I said is clearer now.

Posted by: Mary Johnson on June 1, 2006 11:00 AM

The term 'Care Giver'was substituted in my last book for 'Carer' which is the term used in parts of Australia, I allowed the Canadian editor to proceed mainly due to the bulk of sales of the book were going to be in the USA & Canada.

Posted by: vest on August 6, 2006 06:03 PM

Post a comment

(your email address will not appear publicly)

Remember Me?

(you may use HTML tags for style)

Recommend this story to a friend

To (email address):

Your email address:

Message (optional):