By Maureen Matthews, RN, PhD
“We hate the word ‘dementia! We’re not demented!” We hear this over and over again from participants in To Whom I May Concern® who seek an alternative to the common terminology of “People with Dementia.” In a wonderful story, formatted as a To Whom I May Concern letter, Adele decries the way health care providers use that word:
“Dear Doctors, Nurses, Social Workers: Watch your language! You. Use these words as if they’re nothing! ‘You have Alzheimer’s. You have dementia.’ These words slide off your tongue so easily but they send a chill through my body. There is no life in these words, only stigma and embarrassment.”
But despite their wishes that the word “dementia” would go away, it persists. Does reducing the word to an acronym make it easier?
People with Dementia: PWD
PWD first referred to “People with Disabilities,” which is a list of challenges, both mental and physical, protected by the Disability Act.
It’s not clear when PWD started to mean “People with Dementia.” An article by Jesse F. Ballenger provides a history of how the experience of “dementia” has been framed and reframed. In discussions about the use of “People with Dementia” here at To Whom I May Concern, one team member recalled advocates calling for increased inclusivity by substituting “dementia” for Alzheimer’s disease, and “people with dementia” rather than the alternative or “patients.” The addition of the word “people” seemed a plus because it focused on personhood and person-centered care.
But dementia persists. Some critics of PWD complained that dementia seemed to define the person and preferred PLWD: ” People Living with Dementia.” PLWD is a part of a person’s life but doesn’t define them.
However, dementia persists.
People Aware of Cognitive Changes: PACCs
Removing dementia seems an uphill challenge. Dementia, as it relates to brain disease, has too long a history to change. But as it relates to the people diagnosed, we shouldn’t give up. And to that end, we offer another set of letters as an alternative: PACCs.
PACCs stands for People Aware of Cognitive Changes. This serves a couple of purposes:.
- First, no
dementia. It’s easier for people to acknowledge “‘cognitive changes”’ like memory problems and confusion. - Second, it focuses on awareness. The people who complain about the word
dementiaare people who are aware of what is happening to them. This is a growing group of people who are diagnosed early and are active in their lives even when they need assistance from care partners. - And finally, using the term “PACCs” can help break the stigma of brain disease which always focuses on the end stage. And while the end stage is a reality that PACCs are aware of, it doesn’t have to be where they live NOW.
So will you join us in using PACCs when referring to people living with brain disease? We will never completely remove dementia from our language but we can try to respect the people who live each day challenged but still alive!
