"What's the difference between Alzheimer's and dementia?" I hear that question constantly. Doctors see another version of this confusion: "It looks like dementia," they say. Then the patient (or a family member) replies with relief, "At least it's not Alzheimer's!"
Of course, Alzheimer's is dementia (though not all dementia is Alzheimer's). What's in a name, anyway? Does it matter what we call this brain-wreck of a disease?
Millions of us never find out exactly what's causing Mom to start cursing or a diligent husband to forget to pay bills. Even after memory loss and cognitive glitches become impossible to ignore, families don't always seek (or receive) an official diagnosis. We just deal with the effects.
Besides, the name that doctors put in the chart is changing. This spring, the term "dementia" officially changed to major neurocognitive disorder, according to the DSM-5, the diagnostic bible used by psychiatrists. The new term had been announced in May 2013, with a one-year grace period for everyone to get used to the idea.
Major neurocognitive disorder -- catchy, isn't it? -- is not to be confused with mild cognitive impairment (MCI), a transitional stage between normal aging and major impairment that was introduced in 2011. MCI, which may or may not evolve into Alzheimer's, used to be called pre-dementia.
Adding to laypeople's understandable mixups about Alzheimer's & Co. are the many specific cognitive disorders lately in the news. Broadcaster Casey Kasem just died with the form of dementia called Lewy-Body disease, for example. Cookbook author Paula Wolfert has announced she has Benson's syndrome, a variant of Alzheimer's. Hockey great Gordie Howe is thought to have vascular dementia; his wife, Colleen, died of another brain-disease variant called Pick's. Meanwhile Alzheimer's is said to be the diagnosis for ex-model, restaurateur, and style maven B. Smith and singer Glen Campbell. As for the controversial Clipper Donald Sterling, one evaluation found him to have "mild global cognitive impairment...consistent with early Alzheimer's disease, but could reflect other forms of disease."
Got all that?
Here's what's really matters in the dementia name game:
DO distinguish between "normal aging" and "something's not quite right here."
When he was younger, my son misheard "Alzheimer's disease" as old timer's disease. It's true your odds of Alzheimer's increase with age. It's also true that thinking skills slow in some ways with age. But the biomarkers associated with Alzheimer's are thought to be distinct from normal brain aging.
Yet a new multinational survey from the Alzheimer's Association found that nearly 60% of people mistakenly think Alzheimer's is a natural result of aging.
DO explore the cause of worrisome symptoms.
You do want to find out what's wrong. In some ways, it's as important to know what the problem isn't, in order to rule out or treat possible causes that we know how to fix today. For examples, dementia symptoms that are caused by delirium or dehydration resolve when the underlying problem is addressed. Even if it's a progressive dementia caused by Parkinson's, alcoholism, or a brain injury, you want to treat that issue in all the known ways. When you know what you're dealing with, you can plan ahead.
DON'T get hung up on an exact name.
The importance of getting a diagnosis isn't to pin a label on a person, though. Whether your mom has Alzheimer's or vascular dementia or Lewy-Body, many of her symptoms and care needs are apt to remain the same. There are some differences. But in general, knowing the precise name isn't going to make Dad remember how to pull on his pants or keep your wife from wandering away from home and getting lost.
Too bad the number-one type of dementia such a weird name. Alzheimer's is neither descriptive (like, say, depression) nor simple (cancer). It's just a guy's name, after Dr. Alois Alzheimer, a German physician said to be the first identify it. And it's really hard to spell.
DO consider what's behind a name.
Part of the push behind more precise nameology has to do with sorting subjects for research purposes. By better identifying brain changes, researchers can gain more accurate insights into how drugs or other therapies work.
Some also say that a more accurate name like major neurocognitive disorder can help lessen stigma, because people so fear the words dementia (and its kin, demented) and Alzheimer's.
What's in a name? Plenty. Over in China, there's a push to change the character symbol name for dementia. The name is currently represented by two characters which translate to insane and idiotic. In 2004, Japan switched from characters that toughly stood for crazy person to those meaning brain disease. Net result: Less stigma, more openness to treatment and support.
DO find out what to do about it.
So what if you're left some kind of "major neurocognitive disorder"? Whether it's called Alzheimer's, dementia, MCI, old timers disease, or that-which-shall-not-be-named, the real question is, "What are we going to do about it?"
That's where you can't get enough practical information and emotional support -- also called Help.