The Language of Dementia

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Individuals with dementia often face social isolation because of society’s widespread negative perceptions, which can fuel fear, misunderstanding, distrust, and add to the challenges of living with the condition. It does not have to be this way.

“Words currently used to describe people who are living with dementia, including Alzheimer’s disease, are frequently derogatory and discriminatory.” —Dementia Action Alliance

People with dementia are regular called “demented,” “victims,” and “sufferers.” The condition is regularly described as a “dementing illness” or an “affliction.”

People with dementia say that these words make them want to “curl up and die!”

Language can have tremendous impact on how people living with dementia feel about themselves, and how they are treated and considered by others.

Using appropriate language is respectful, supportive, and non-discriminatory. The term “person living with dementia” acknowledges that dementia is not the defining aspect in the person’s life, but rather is just one facet of his or her life.

“Living Fully with Dementia: WORDS MATTER”is a white paper released by the national Dementia Action Alliance to highlight the impact that words and phrases can have on the well-being and lived experience of people who have dementia. This paper provides guidance on preferred words/phrases, including the rationale for their use, as determined by a consensus of a number of people living with early-stage dementia. “WORDS MATTER” is intended to serve as a national “Call to Action” for all of us.

Here’s what you can do:

  • Read “Living Fully with Dementia: WORDS MATTER.”
  • Read “Dementia Words Matter” by the Dementia Engagement & Empowerment Project (DEEP) in the UK.
  • Take a good hard look at the language that you are using. Use the 4 C’s:
  • CHECK the words and descriptions you are using in your materials, your website, and your actual conversations.
  • CHANGE any words and descriptions that people with dementia have told us not to use.
  • CHALLENGE words that you recognize as “curl up and die” words whenever you see or hear them —in conversations, in newspapers, in conferences and meetings, and in your own thinking.
  • Be a CATALYST for change within your own community and network of influence.

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