Dementia, Caregiving and Political Correctness


I sometimes surf the web, reading what I can about Alzheimer’s disease (AD). Short stories or paragraphs are all I can handle nowadays, and only then can I hope to remember what I have read.

I came upon a couple of stories that have been discussed in recent months by some people who are considered to be in the know when it comes to Alzheimer’s, or dementia in general.

It never ceases to amaze me how someone sitting behind a desk somewhere can pull some of these things out of nowhere, yet vow that their ideas are in everyone’s best interest. The latest foolishness that I have seen is to refrain from calling people with AD, “Alzheimer patients.” It seems as though calling someone an Alzheimer’s patient is labeling the person, and labels, by definition, are limiting.

Wait, what? When I read such nonsense, as an Alzheimer’s patient, I take real offense. I’m not offended by these clueless people, but the mere fact that others actually buy into this nonsense.

"Don't call an Alzheimer’s patient an Alzheimer’s patient." Isn't that in itself what they call a misnomer?

And why is someone who doesn't have Alzheimer’s or any form of dementia, always behind movements like this? How do they know what is best for people like me?

Now, as if this wasn't enough, some of the same organizations want to stop calling people suffering from AD “sufferers.” Instead of calling me a sufferer of dementia, I should be referred to a person who is “deeply forgetful.”

I kid you not. This kind of stuff is actually written about in more than one magazine that goes out to doctor’s offices and can be found around the internet, so you know it has to be true!

They also make another idiotic appeal, this time regarding caregivers. It seems as though one should refrain from using the term “caregiver” anymore.

The article goes on to say, “To see yourself as one who is providing care to another establishes a hierarchy within that relationship; a hierarchy with you on top.”

In essence, calling my wife my caregiver is demeaning to me because it establishes a hierarchy within our relationship. To avoid creating this uneven playing field, we should use terms like “care partner” instead.

Well, here's a shocker... Phyllis June is number one in the chain of command. Good Lord. She knows what is best for me and has seen these things through for me over the years since my diagnosis. Does this make our relationship uneven or any less of a partnership?

You have to be special to buy into this kind of nonsense. Yet, once again, there are organizations peddling this and they consider themselves to be credible. But let me tell you something. All this boils down to one thing, and one thing only: political correctness. Period.

Somehow even the long arms of politics are trying to infringe on the world of dementia. Why? Because, as I have said for years, it's big business.

Use whatever terminology you and your loved one are comfortable with. After all, you know each other best and understand the true depth of and meaning behind your relationship. If one of you happens to find certain words hurtful or demeaning, be honest, talk through it and find a better alternative. There is no such thing as one-size-fits all advice or solutions for dementia.

Rick Phelps became an advocate for dementia awareness after being diagnosed with Early Onset Alzheimer’s Disease in June of 2010, at the age of 57. He was forced into early retirement and created Memory People, an online dementia and memory impairment group which supports over 7,000 individuals, all touched in some way by dementia.

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Prior to my husband's diagnosis, he thought he was a very forgetful person. It made him feel bad about himself, because no matter how hard he tried he couldn't fix it. He was glad when we got the diagnosis of Lewy Body Dementia, because it was the disease not him. There are also differences in behaviors between Alz and LBD, so the "labels" are helpful. Using them also helps educate people that there are differences.
Political correctness is an evil concept fomented by people who don't like to be referred to as different.

We are all different, yet we are all the same. We are all, from all around the world, human beings, with the same organs, bones and other stuff as everyone else. Yes we come in various colors, sizes and shapes; yes we have different thoughts, ideas, ideals and goals, but that is what makes us all different yet the same.

Like Phyllis June is to Rick, so Peggy is to me. She is the one person in this world I truly trust, the one person who knows me best and what is best for me, and she's an RN to boot!!! (how did I get so lucky). She IS my caregiver, my protector, my voice. She makes sure I do what I need to do when I need to do it, helps me when I need help, and does for me if I can't do it myself. And that does not bother me; I'm proud of her for it.

My dog, a dachsund named Dee Dee is my care partner. She keeps up with me, makes sure I go for walks, barks to alert me to things (including seizures), and barks when I need help. And that does not bother me, I am proud of her for it.

I have Lewy Body dementia and Frontotemporal dementia. I don't hold those up as badges of honor (my military service and 35 years as a human service professional is that), but Lewy and FT are part of who I am. I have dementia! But I am NOT demented! I am a patient; that is what you are called when you see a doctor, just as I am a father because I have children and a grandfather because I have grandchildren.

None of those things make me different, but in and of themselves they do make me unique because not everyone is what I am. Call me what you want, but be accurate when you do: I am ME. And if that offends you, YOU have a problem.
Thank you! Thank you! Thank you! Not only is this politically correct terminology a bunch of nonsence, it is outright dangerous at times. The agency that sometimes places an aide in our home so I can go shopping , danced around the issue of Alzheimer's with the aide to the point that she left him alone in the bathroom and told him to call her when he needed her. An hour or more later he had forgotten the conversation, she was deeply engrossed in her cell phone--and he ended up trying to get back to his chair by himself. Yes, he fell! He knows he has Alzheimer's and has no problem with the term. It does, however, bother him to be called extremely forgetful.