Alzheimer's A to Z

with Dr. Jytte Fogh Lokvig

Words Matter

The words we use affect our feelings toward our situations and people we care for.

If we talk and think of caregiving as a burden, it most certainly will be so. When we call a person an empty shell, we’ll think of her and treat her as such and she’ll likely withdraw into herself and “prove” us correct. 

We don’t identify people by their disorders or diseases: i.e. If we have chronic conditions like diabetes or scoliosis, we wouldn’t want to be referred to as a diabetes person or scoliosis person, would we? How would feel if these words were used about you?

Alzheimer’s person, Demented person should be “A person living with Alzheimer’s or dementia”

Crippling, Demented, Victim, Sufferer, Invisible, Fading, Not all there, Empty shell, Losing it . . . These terms assume that we should use our own standards to judge others. Well, in that case, whose standards? - yours or mine?

Behavior problem, challenging behaviors, difficult behaviors. Often the “problem” is with the caregiver and a lack of understanding communication. A person who has lost his ability to communicate with words will resort to other ways. If he’s frustrated that you don’t get the urgency of his problem, he may flail, gesture, make loud noises or even strike out. We call this “behavioral expression.” - What would we do if we were stuck in a foreign country and needed help but didn’t know the language?

Vocalizer, Aggressor, Wanderer, Sundowner, Feeder. We don’t describe each other by our actions, so why do so with people with dementia? We have stripped them of their humanness.  

Fighting Alzheimer’s, War on Alzheimer’s, Win over or beat Alzheimer’s, Battling Alzheimer’s. Combative terms keep us in a negative and often hopeless state. Until we come up with a cure, Alzheimer’s and other dementias are chronic conditions and for everyone’s sake, let’s make the best of our situations.

And lastly The long goodbye. This may be the most cruel of all. Does this mean that a person starts dying as soon as he is diagnosed?

Richard Taylor who lived well for over ten years with a diagnosis of dementia, probably of the Alzheimer’s type: “I’m still ME, so let’s say HELLO”

Video: The Power of Words