Why It Matters

The term “dementia” is outdated.

The term “dementia” was first used as a medical diagnosis in 1797, and has been in use since the 13th century.

The term “dementia” is inherently stigmatizing.

The words “dementia” and “demented” originate from the Latin word demens, meaning “out of mind” or “without mind” and are synonymous with “mad” or “insane.”

The results of a survey of 1000 individuals 65+ living in the US demonstrate unequivocally: change is needed.

The term “dementia” perpetuates stigma.

Of those surveyed, eight in ten believe there is stigma associated with the word “dementia.”

When asked how they would picture a friend’s condition if they heard they have dementia, nearly half of respondents indicated they would picture this friend having difficulty performing every day tasks.

The term “dementia” is associated with negative emotions.

The top three emotions associated with the word “dementia” are

helplessness (66%)

confusion (81%)

isolation (58%)

The stigma associated with the word “dementia” delays diagnosis.

Respondents living with Alzheimer’s disease or cognitive impairment felt it was difficult for them to accept their condition and seek a diagnosis.

Respondents living with Alzheimer’s disease or cognitive impairment felt it was difficult for them to open up to family or friends.

The stigma is particularly pronounced for people of color, with 47.5% of non-white respondents had friends or family who struggled to accept the diagnosis and/or seeking a diagnosis or treatment, compared to 40% of white respondents.

The term “dementia” is not preferred by the community.

The word “dementia” was less popular than all three alternative terms presented.

It’s time for change.

Now, with Medicare-covered disease-modifying drugs proven effective for the treatment of mild cognitive impairment, it’s time for a positive shift to more affirming language for living with cognitive impairment.