Caring Currents

Would You Rather Your Loved One Had Dementia or Alzheimer's or Frontotemporal Lobar Degeneration?

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The word "dementia" is worse than passé—it's pejorative. It's like mongoloid. Or cripple. Moron. Midget. It's a term to be retired, argues John Trojanowski, co-director of the University of Pennsylvania's Center for Neurodegenerative Disease Research, in an essay in the new Archives of Neurology.

Hearing the label "dementia" makes average people think of madness, he argues. For the person afflicted, it creates a sudden "epiphany" of having arrived at a "dead end diagnosis," which changes (for the worse) the way you think about yourself and the way you live your life.

Trojonowski prefers the technical description (e.g. Pick's disease, or frontotemporal lobar degeneration) or the more descriptive "cognitive impairment" or "neurocognitive impairment" if the exact cause is uncertain.

Wall Street Journal Health Blog blogger Scott Hensley followed up with the essay's co-author Don Trachtenberg, who says most professionals have responded supportively. Already the adjective "demented" is socially verboten. Of course there are also those like Peter Whitehead, the physician author of The Myth of Alzhemer's, who believe "Alzheimer's" is a label that carries a similar severe social stigma and self-defeat. (He likes "brain aging" or "what used to be called Alzheimer's.")

Word choices carry powerful connotations. Just this week, my fellow blogger Melanie Haiken wrote about the term "care-partner" replacing "caregiver" in cancer care -- another semantic shift also favored as being more precise and patient-empowering by many involved in Alzheimer's/dementia (or whatever we're calling it).

So where does that leave us?

  • Dementia over Alzheimer's
  • Alzheimer's over dementia
  • Brain aging
  • What-used-to-be-known-as-Alzheimer's
  • More precise diagnoses (like frontotemporal disease)
  • More general diagnoses (cognitive disorder, neurocognitive impairment)
  • Pick's disease over Pick's dementia, vascular disease over vascular dementia

What do you prefer?

Whatever the name, it's hard to disagree with the description used this week by former Supreme Court Justice Sandra Day O'Connor, speaking before the Senate Special Committee on Aging, about her husband's Alzheimer's: It's "a family disease."

Which begs the related question: Is coping with it, for you and your loved one, a better or worse experience, depending on what it's called?



Image by Flickr user Windy Angels, used under the Creative Commons attribution license.