Words Matter

 

There’s a worldwide effort to change how we think and speak of cognitive disabilities, led by people who are living with dementia.  - Change your language, change your attitude and approaches. We no longer use terms like GIMP, RETARDED, or CRIPPLE. Dropping these derogatory terms changed the culture. People living with all sorts of disabilities are now fully participating members in the community.


No one suggests that it’s easy caring for someone with dementia, including Alzheimer’s. However, we may aggravate our situations by the terms and words we use when we talk and think about dementia. We may not realize how our terminology affects our perceptions of our situations and the people we care for. If we think of caregiving as a burden, it most certainly will be so. If we think a person is an empty shell, we’ll treat her as such and she’ll likely withdraw into herself and “prove” you correct. - On the other hand, we can allow ourselves to go with the flow, include her as much as she wishes and make the best of the moment.


The following lists were compiled by people living with dementia, including Alzheimerʼs.


• Don’t blame the person for the changes in behavior or personality.

• Don’t assume I can’t answer for myself.

• Don’t talk about me to someone else, in front of me.

• Don’t assume we can’t communicate even if we can’t speak.

• Don’t assume we don’t understand just because we are silent.

• Don’t assume because we can’t tell you, your words or actions don’t hurt our feelings.


Excerpts from a long list of common (misguided) terminology:


INAPPROPRIATE TERMS


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?


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 - - - whose? - 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 and make loud noises. We call this “behavioral expressions.”


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. Pleeeeeeease!!! Maybe the most cruel of all. Does this mean that a person starts dying as soon as he is diagnosed? In that case, we could start using that term with any newborn infant, because the truth is we’re all dying a little every day of our lives. So, to borrow from 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”