That we don’t already is down to, amongst other things, stigma, intolerance, an inability to make allowances for anyone who falls outside of the considered 'norm', and ultimately that since dementia is believed to be a disease of the old (which it isn’t exclusively, far from it), and the older generation are not valued anywhere near enough, it is somehow considered unimportant, even an irrelevance to many. In short, something that should be hidden way until people die with it.
Now society needs to make the same leap it has in accepting other minority groups and adapt itself for those living with dementia, thus enabling them to remain valued within their communities throughout their journey with this disease. In fact with cases of dementia predicted to rise to 115 million worldwide by 2050, far from being a minority disease, dementia will be something that is affecting huge swathes of people both directly and indirectly, including those who, for now, are completely untouched by it.
Massive strides have been made to help disabled people, children, and those of different ethnic backgrounds and sexual orientations to get a fairer deal, and in the medical sphere many other diseases are now widely recognised, talked about, and those living with them are assisted to lead lives that are active and full, so it is not impossible, but it is a big task.
You realise just how far the country as a whole must go when you encounter discrimination against those living with dementia from within the very sector caring for them. On my travels as a singer in care homes last year I visited one particular nursing home; it was very large, bright, airy and outwardly extremely welcoming. I discussed my background in dementia care and they wondered if I would be prepared to come and sing for the residents of their dementia unit. They admitted that, although they knew that those residents living with dementia loved music more than any other activity, they always booked the entertainers to come and sing for the 'normal' residents on the non-dementia unit. They thought that maybe it was about time they changed that, but if I was going to come and sing for their dementia residents they would like to pay me less! My reaction isn’t printable.
In balancing the argument I would admit to having had other, far more positive experiences which I will talk about at a later date, but it is pretty damning that if the whole of our care home sector isn’t even producing dementia friendly communities from within their own walls, we have got a job on our hands to convince the population as a whole to value, appreciate, support and help people living with dementia, and all those whose lives are touched by this disease.
I actually think that, despite the odds, it is possible to make the UK a place where people who are living with dementia can lead the lives they deserve to, rather than the ones foisted upon them by prejudice and ignorance. For such a quest to be successful, however, the people at the heart of it need to be those who know what everyday life with this disease is really like.
In another blog I will write about my vision for dementia friendly communities, and what I think would improve the lives of all those for whom dementia is a reality now, or will be in the future.
Until next time...
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