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Marguerite Manteau-Rao Headshot

Alzheimer's in the Media

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Reviewing the New York Times articles from this past year on Alzheimer's disease*, I tried hard to find some positive words, and found instead a language imbued with fear and coldness that dehumanized the persons living with the condition:

  • They are patients, sufferers, victims or sometimes just plain cases.
  • They are afflicted, demented or suffering.
  • They are being cared for by caregivers.
  • They suffer from a dreaded, terrifying, terrible, fatal, horrific, devastating, bad, debilitating disease called dementia.
  • They are being robbed of all that matters most.
  • They often live in facilities.
  • They go through stages, beginning, middle and end; they are early or late onset.
  • They present "behavior problems" -- they act out, scream, wander and are combative.
  • They need to be managed.
  • They are a burden.
  • They have an illness that needs to be attacked and beaten.

Having been around enough persons who live with what is commonly called dementia, I could see why. It is true that left on their own and not cared for properly, the ones whose thinking mind is slipping can present a scary picture:

2011-01-05-scream_3.jpg

More to the point, though, is the fact that our collective response to the condition is what creates that picture. In our efforts to move forward and treat Alzheimer's as a medical emergency, we have abandoned the earlier view of dementia as a natural evolution of aging. While scientifically correct, this new approach has also caused us to lose the human aspect. The culture-change philosophy of person-centered care that has been making waves throughout long-term dementia care facilities in the U.S. and other countries represents a step in the right direction. Attention to the language being used to think and talk about Alzheimer's and dementia should be a part of that movement. As shown by the New York Times, we are still far away from that reality. One small drop at a time, here is a list of new words to use when speaking and writing about Alzheimer's:

2011-01-05-SpeakingAboutAlzheimers.jpg

Respect the person.

May you, too, be an agent of change, and spread the good words about Alzheimer's and the persons living with it.

*List of New York Times articles included in my review:

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