We need to talk about dementia, but not at the expense of the good moments

I was so disheartened and sad to read an article in the Scottish Newspaper, The Herald with quotes from a leading professor. It was advertising a 30 minute dvd soon to be release called ‘We need to talk about dementia’ – I’ve put the link on the transcript (see below).

One quote in particular I found offensive and very sad it read,
“People are told ‘worried about your memory? Go and see a doctor,’ and told that it is possible to live well with dementia. But the truth is it is really grim when someone in your family has dementia,” she said.

Yes dementia is about so much more than memory – no problem with that. I wish people were told it is possible to live as well as you can and that life doesn’t suddenly stop. But that’s so rare from what so many others tell me and from my own experience.

As for the last part of the quote, ‘But the truth is it is really grim when someone in your family has dementia,” that is the sad part………How does she think that makes us feel? Those of us trying as hard as we can to live as well as we can despite the rubbish that dementia throws at us. It instantly brought the word of ‘burden’ to the forefront of my mind…… We know it’s not plain sailing and none of us have ever said that but to call it grim? That’s exactly the language that will continue societies image and stigma associated with a diagnosis of dementia.

Yes, we need to talk about dementia, the reality, but not at the expense of neglecting the good moments. If people had the right support and education from the right people from the start, the ‘grimness’ wouldn’t be so grim.