On the 5th day of publishing a blog in support of Scotland’s Dementia Awareness Week, we are covering the topic of the literal definition of the word dementia, rather than discussing dementia from a medical perspective.
Following on from their theme of a better word for people with dementia and their families, by making sure nobody faces dementia alone, we hope this topic provides an opportunity to also rethink language, as this impacts the experiences of people with dementia and their families and friends.
A person with dementia in many countries is still seen as someone who has been taken over by Evil Spirits, and educating communities this is not the case is a long and slow process. The word, in English is derived from Latin, meaning madness (see above). It is no wonder four areas in the world have removed the word from their language.
Many say it is not the word dementia that is the real problem, but those people who treat us as if we are ‘mad’ or ‘not all there’. In saying this, it is important to be reminded this viewpoint is usually coming from the perspective of people with dementia who are predominantly white Anglo Saxons from developed countries.
People from non developed countries are more often likely to take the literal meaning more seriously than we do, and find the synonyms such as mental illness, madness, insanity, lunacy and derangement highly offensive, also possibly why the word dementia has already been deleted from four languages.
Kate Swaffer wrote about the word dementia a few years ago, and likened how it felt when first diagnosed to the Dementors in Harry Potter, sucking out her soul. Whilst she held onto that fear, and believed the narrative of others that she was becoming an empty shell, it was certainly very difficult and took some time to see past that fear, and feel and live more positively with the diagnosis.
Many people with dementia now find their way past that period of darkness more quickly, especially through joining the DAI peer to peer support groups or with our one to one mentoring.
Thinking about the definition of the word dementia, interestingly, also relates to the initiatives known as Dementia Friendly Communities and Dementia Friends.
Based on the fact that four countries or regions have deleted the word dementia from their language, and replaced it with what they believe to be more respectful and sensitive terms, it is probably time we also reviewed the terms Dementia Friendly Communities and Dementia Friends as well. You can read our Chair, Kate Swaffers thoughts on this in her blog titled Inclusive Communities. It is surely food for thought.
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