I started this share on a very specific subject-and it was about words (images became a secondary discussion )
My point was user and members of the Alzheimers Society site were asked to contact journalists and the media portraying Alzheimers with particular words. I repeat- the information from this website
I suggest that we should respect people those with Alzheimer's disease, but the use of many of these words are very acceptable to me in media and by journalist. I do not know why we are being advised to not use these words around our life situations. (Excluding bullet point 3 which is certainly just disrepectful) I would to know why the site would like us to encourage a sanitized of our experiences in the media. How will that benefit our cause?
- Sufferer or victim – a diagnosis of dementia doesn’t define anyone and we should never label people with dementia. Use ‘people (or person) living with dementia’ instead.
- Senile, pre-senile or demented – these outdated words disempower people with dementia by making them seem passive, childlike, or worthy of pity.
- ‘Away with the fairies’ or ‘not all there’ – these slang expressions and others are derogatory and very insulting to people with dementia.
- Burden – this dehumanizes someone, and makes them out to be nothing more than a drain on time and resources rather than a person.
- Hopeless or tragic – it is important to be realistic about dementia while not being overly pessimistic or frightening. Use words like ‘challenging’, ‘life-changing’ or ‘stressful’ instead.
This is where our individuality shows up. I personally am not enthralled with some of these terms - Bullet 2, 3, 4, and 5. Honestly I'm not that keen on 1 either. But it is all through my personal point of view.
My mother had Alzheimer's but I never thought of her as a victim or sufferer. The early years were particularly tumultuous, as older members who knew me then can remember. I didn't think of myself as a victim either. To me, using those words is a distancing mechanism.
I do NOT like the terms senile or pre-senile at all. Demented doesn't bother me though.
Away with the fairies or not all there is simply ignorant and glib, in my opinion.
Burden - yes, I had some very hard times with Mum. Was she a burden? There were times when the circumstances were a burden and events were quite frankly horrible but the word 'burden' to describe Mum was not right.
Hopeless and tragic are fair descriptions at times but I don't like them. I think these words make it easy for some to look the other way.
So I think it's okay if a person wants to use these terms to describe their loved one. I don't and didn't want to do that. Again, it comes down to a personal point of view.