The Stigma of Language in Alzheimer’s and Dementia

The Stigma of Language in Alzheimer’s and Dementia

Serene Suites

I’m a language person. Language is important. It not only defines how people see us but ultimately how we view ourselves. It allows us to communicate with others, and can impact stigma and discrimination. It has the potential to promote and empower, enable and increase self-esteem, and encourage one’s ability to self-help and self-advocate.

Or it can demean, devalue, disrespect and offend those we refer to. This is especially true in the world of dementia care.

In my twenty years of working in the field of dementia care, I have noticed the open acceptance of mocking those with memory loss. If I had a nickel for each time someone said, “Oh gosh, you’re going to need to save me a room soon because I’m losing my marbles!”, I’d be rich.  My response is always the same: “I will take great care of you.” Imagine if we had the same joking attitude toward cardiac disease or breast cancer?

There are small, but meaningful steps we can all take in using more compassionate and accurate language in discussing a person living with dementia.

As an expert in dementia care, I replace the phrase “suffering from Alzheimer’s disease” with “navigating the journey of brain change.” The term “demented” is unacceptable too. Instead of discussing “behaviors” I refer to them as “expressions” or “challenges.”

It’s important to know a person living with dementia is living in brain change and doing the very best they can with what skills they have left.

Language affects the experience of stigma. Stigma affects many factors, including the person’s willingness to seek diagnosis, to seek support once diagnosed and a lack of willingness to participate in research.

Stigma affects more than just well-being and quality of life for people with dementia and their families. I choose the route of respect each and every time in my language, and it’s something every one of us at Serene Suites chooses as well. It is a small step that starts the discussion in a positive way.