By Joanne Dorr
The Haldimand Press
HALDIMAND—MICE Haldimand (Memory+ Inclusive Communities Everywhere) is a group of citizens sharing their experiences with memory loss and other cognitive challenges. Their goal is to create a more understanding, helpful, and inclusive community for everyone. As such, MICE Haldimand is currently running a public voting campaign to rename dementia.
The voting campaign is born out of the impact the negative connotation that the word ‘dementia’ has on the community of people who live with memory loss and other cognitive challenges.
MICE member Andrea Beggs, who lives with frontotemporal dementia, knows first-hand the negative impact the ‘D word’ can have, sharing, “I know of some people with dementia who have not told their families because they are so ashamed.”
Webster’s Dictionary says the term dementia derives from the Latin root ‘demons’, which means being out of one’s mind. Although the term has generally been used since the 13th century, it has been reportedly used in the medical community since the 18th century. Beggs challenges the continued use of the word dementia by asserting, “Dementia is a symptom, it’s not what we have. Really it should be a medical type term.”
Shelagh Kiely, Project Coordinator at the Hamilton Council on Aging, adds there are many people who resist the idea of changing the name by oversimplifying the issue with an “it’s not a big deal” attitude.
Beggs attests, “Dementia is a conversation stopper. As soon as you tell someone you have dementia it’s kind of like the end of the conversation.”
Beggs feels renaming dementia will change attitudes and stereotypes. Beggs also explains that the MICE initiative is inspired by existing movements to renameaAaA dementia in the medical community and around the world.
“A lot of medical doctors already use other words in their practice and there are a lot of countries around the world that have already dropped the word,” says Beggs. The johnhopkinsmedicine.org website indicates the term has been replaced by “major neurocognitive disorder” and “mild cognitive disorder” in medical terminology, while Japan now refers to dementia as “ninchi-sho” or “cognitive disorder”, which Kiely notes that Japan has done significant work to improve its societal views of the condition.
As an independent group, MICE partners with the Hamilton Council on Aging to advance their initiatives and goals through various grant programs. Kiely explains, “Many medical professionals are behind us in changing this word.”
The deadline for voting on the dementia name change has been extended to March 6. This change aligns with the date of the Dunnville Mental Health Expo, where MICE will have a booth and make a live announcement of the results of the voting.
MICE hopes to take the results of the survey to the medical community to suggest alternative terms. Beggs adds that the existence of a suggested word may be the beginning of the change process.
If you’re interested in placing your vote for “Rename Dementia” or becoming a MICE member, please visit micehaldimand.ca.
