Over the past year, I have had the opportunity to speak with dementia experts from across the country. As I have stated before, these people are the most dedicated and selfless people I have ever come across. Their passion excites me each time I speak with them. Their passion and drive give me hope and comfort for everyone impacted by dementia.
It is because of their expertise that the words related to dementia – Alzheimer’s, caregiver, dementia, caretaker, etc. – roll so easily off of their tongues.
To individuals “in the industry”, these words are used every day and become familiar. There is no shame or embarrassment in these words. To lay people, I am not sure this is the case. I wonder if this is one of the reasons people are reluctant to be more proactive with memory disorders?
Many words in the “dementia lexicon” are words that make the general public uncomfortable or uneasy. These are words that no one wants to associate (at least initially) with themselves.
Think about it, who wants to call an Alzheimer’s care center? This may be admitting you have Alzheimer’s. What caregiver wants to be called out as a “caregiver” - at least early in the journey? Wouldn’t this mean you are admitting something is very wrong with your loved one?
Think about the mental images these terms evoke to the general public. Caregiver – old, feeble, fragile individual taking care of another (at least as it relates to dementia). Alzheimer’s evokes all sorts of negative images. Dementia – more of the same.
I understand the words being used are accurate, and I also understand there shouldn’t be a shame, stigma or reluctance to use these words. However, the reality is that there is a shame, stigma and reluctance when using these words. And because of this, people impacted by dementia may be reluctant to use and/or accept these words.
I don’t have an answer to this challenge other than suggesting the professionals in the industry be sensitive to this issue and recognize that the terminology can be frightening to non-industry people. I would hate to see people not seek the help and encouragement available to them because of the wording being used by those willing to help.
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