In 2015 dementia-linked death rates went up nearly 20 per cent for women and 16 per cent for men, making dementia the biggest cause of death in England and Wales.
According to The Alzheimer’s Society there are 850,000 people with dementia in the UK. If we multiply that figure by the number of people caring for dementia sufferers, be they family members or staff in a care home, it’s got to be pushing two million.
Add in the wives, husbands, brothers, sisters, sons, daughters, cousins and friends of someone with dementia and we’re probably talking in the region of 15 to 20 million people.
It’s against this devastating and cataclysmic backdrop that my brothers and I decided to make a film about one dementia sufferer: My father, Colin.
It wasn’t an easy decision. Sadly Colin is unable to give his consent to appearing in the film and so we have agreed, on his behalf, to expose him and his condition to, potentially, millions of people.
I have often asked myself what the Colin of 20 years ago would have done. Despite being a very funny, quite loud at times and forceful personality, he was not a showman, not someone who ever liked or craved the spotlight.
So, there’s uncertainty, there’s doubt, there’s angst and there’s soul searching, but, having seen the finished film, I think the decision was the right one.
Until fairly recently, the most challenging aspect of my father’s dementia was not memory loss, or indeed, loss of self, but disinhibition.
His behaviour was extreme and very difficult to cope with, and this is an aspect of dementia that is rarely talked about or seen.
Like most people, when I used to think about dementia (of which, incidentally, there are more than 200 variants) it was predominantly in terms of memory loss, but there are many other behaviours associated with the disease, and, it seems to me, that, in this respect, the support and provision for sufferers and carers is severely lacking.
When my father was at his most difficult, in the months after my mother died, we tried to find a care home for him. We visited the homes and told them that our father’s behaviour could be very challenging at times.
This, we were assured, would not be a problem. Then they met him, and it was a problem, so much so that we were told by a number of homes that they could not accept him as a resident.
Now, I understand why this happened. The safety and comfort of the other residents must be paramount, the home is, after all, their home, but the lack of provision for elderly people with more challenging behaviours is shocking and, for the families of sufferers, potentially devastating.
We are lucky. We are able, with some support from the local council, to pay for 24-hour, live-in care for my father, which I’m pleased to say has worked out extremely well.
Millions of people in the UK don’t, realistically, have that option and are left to deal with the situation, largely on their own. And, unless something is done about it, it’s only going to get much, much worse.
That’s why we made the film.
The Trouble With Dad airs tonight (Monday), 9pm on Channel 4