Charleston case

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

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.

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  • Just as I was about to stand up to the lectern last week I was introduced as a dementia “expert”. The only response I could make was:

    “Hi – I AM a dementia expert………..In my father’s dementia – as for the other 799,999? Haven’t got a clue.”

    As for awareness week – I was discussing “awareness weeks” with Sandy from the Forget me Nots in Swindon last year. Her response?:

    “It’s all good, but I have dementia the other 51 weeks as well”

  • Rena Galvin

    What can citizens do to help?

  • haha Steve. brill.

    @Rena – look around for organisations off Google such as charities, people, or social enterprises you’d like to support. You can pop onto Google to see if there are any books on dementias you’d like to read. But it would be really helpful if you could commit to something, such as finding and being of practical help to a person with dementia if he or she wants it; or raising awareness through initiatives such as ‘Dementia Friends’ in your jurisdiction; or looking into supporting specialist nursing services similar to Admiral nurses. I think there’s loads you could do, and it’ll come to you what you feel most comfortable with in due course. Thanks very much for your interest.

  • Reblogged this on Chrys Muirhead .

  • Hi Shibley, as Sube Banerjee said in Brighton yesterday, “dementia doesn’t recognise boundaries” so we should certainly not apply any time boundaries on activities designed to increase awareness of the illness and the capacity it has to wreak havoc on entire families. I speak to dozens of care home managers every week (not just last week) to learn how they empower their staff to provide dignified and person-centred care. Lots to do.