Day: May 24, 2014

The Purple Angels’ Dementia Awareness Day, founded by Norman McNamara, on September 20th 2014!

Shibley Rahman 0 Comments

I’m looking forward to the Purple Angels’ Dementia Awareness Day to be held on September 20th 2014.

This year’s chosen charity is “YoungDementia UK“, and here is the link to the “Just giving” page which has been set up.

Dementia is considered ‘young onset’ when it affects people under 65 years of age. It is also referred to as ‘early onset’ or ‘working age’ dementia.

However this is a somewhat arbitary age distinction which is becoming less relevant as increasingly services are realigned to focus on the person and the impact of the condition, not the age.

Dementia is a degeneration of the brain that causes a progressive decline in people’s ability to think, reason, communicate and remember.

Their personality, behaviour and mood can also be affected. Everyone’s experience of dementia is unique and the progression of the condition varies. Some symptoms are more likely to occur with certain types of dementia.

Dementias that affect younger people can be rare and difficult to recognise.

People can also be very reluctant to accept there is anything wrong when they are otherwise fit and well, and they may put off visiting their doctor.

They are of considerable interest to me, as my own Doctor of Philosophy was passed by the University of Cambridge in January 2001, on “Specific cognitive deficits in the frontal lobe dementias”.

Norman

Norman

Norman McNamara from Devon was diagnosed with dementia six years ago when he was just 50.

Although his father and grandmother had suffered from the condition, Mr McNamara did not expect it to be part of his future.

He said: It was never really in the back of my mind that I might get it.

“I think it came to a head when I set the kitchen on fire three times.”

After his diagnosis, McNamara, from Torquay, began blogging online about his experiences and during a phone call with a friend he had the idea of organising the first Dementia Awareness Day.

The event was marked all across the world for the first time on 17 September 2011.

Norman McNamara writes, regarding this year,

“We want this year to be the best ever, and you don’t have to wait until the 20th Sept 2014 to do some fundraising! It doesn’t matter if it’s today, tomorrow, the 20th Sept or even New Year’s Eve!’

“All that matters is that you hold a small event, be it a coffee morning, a football card, car boot, a bingo game, a concert or even a SKY DIVE!”

“It really doesn’t matter, just please be assured that every penny you raise and donate to this link will go straight to YoungDementia UK and be spent on those who need it most, those with Dementia!”

“So please, let me know what you are organising this year so we can advertise it, the more people know about it the more we will raise.”

Dementia awareness is not just for one week. It’s for life.

Shibley Rahman 5 Comments

This is Chris Roberts, a ‘Dementia Friend’, sporting his latest T-shirt.

mason4233

Chris lives well with dementia.

The message is though extremely compelling.

There are very few people I’ve ever met who ‘understand’ dementia. University Chairs are often very sharp political operators, whose brown nosing and networking skills are second to none. Of course not all Professors are like that.

There are also many academic authors who know how to play the system. They on the way up will write with someone well known so that they get published. This is a different version of when you tag somebody well known in your tweet in the hope that your shill can gain some momentum.

We have got to get out of the language of ‘opportunity seeking’ for dementia. You cannot measure success in dementia awareness by the number of new website domains with the bit ‘dementiaawareness’ in it.

As such you can’t sell ‘awareness’. You might be able to sell knowledge, but much of this knowledge, albeit unreviewed, is available on the world wide web. But that’s not to say there is a problem here. Most people’s basic knowledge of the dementias is poor, perpetuated by many people who should know better equating dementia with mild memory problems.

And promoting dementia awareness is not exactly equivalent to promoting a charity. To say that I have been disgusted with the naked unpleasant rivalry by some against others is an understatement. I know of one prominent person who has literally been pimping ideas and palming them off as his own. This has got to stop.

Cures for dementia sell copy – like Nigel Farage.

We’ve got a long way to go – whether the name itself ‘Dementia’ is appropriate, whether the word ‘carers’ or ‘support’ are appropriate, whether personal budgets would work, whether whole person care will work, whether it is possible to do case finding for dementia, whether there might be a promising medical treatment for dementia, and so on.

If you’re interested in being part of a network that doesn’t want anything, but wishes to spread goodwill and knowledge about dementia, please feel free to join our Facebook group.

But just because dementia awareness week ends today doesn’t mean we should park the idea til next year. Like living with any long term condition, it should be a way of life. Understanding it is part of our basic humanity, and our ability to be aware of dementia individually is a potent endophenotype of our make up as a caring society.