“The Dementia Experts, that is, the people living with dementia, have the right to say what is offensive, and what is appropriate. At Dementia Alliance International, an advocacy and support group of, by and for people with dementia, we are gathering members, and building our resources, which will eventually include language guidelines. We are living as well as we possibly can with dementia, and want to change the negative disempowering terminology.”
There has been a lot of noise on social media and other places about the use of the word ‘sufferer’ in the last few weeks when referring to a person with dementia. Last week, I received a reply by someone willing to change the term to a person diagnosed with dementia, with acceptance and grace. Such a welcome change from most users of this offensive term, respectful and gracious. Interestingly, the people are the most impolite about it, and who refuse to think we actually have no right to be offended by it, when they are not, are journalists and professionals. Not all, for sure, but many. And also family carers, who my husband and I believe are the ones more likely to be suffering than those of us diagnosed with dementia.
So, does ‘I am suffering from… dementia, arthritis, cancer, MS etc sound more negative and less empowering than…
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