Panorama - Living With Dementia: Chris’s Story

Producer, BBC News

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A tall, self-assured cool guy, with a twinkle in his eye and an answer for everything, when I first met former biker and businessman Chris Roberts, I’d never have guessed he had dementia.

“If I had a pound for every time someone said “really?!” I’d be a rich man!” laughed Chris.

He was just 50 when he was diagnosed five years ago, with vascular dementia and young onset Alzheimer’s disease.

Since then, he’s devoted his life to awareness-raising, travelling with his wife Jayne, across Britain and abroad, speaking at conferences, giving the inside view on what life’s really like living with dementia.

“It keeps my brain busy, which is a good thing - because the more I can keep the old grey matter going, I think the less quickly I’ll progress,” he told us.

Chris is keen to point out that dementia is not just about memory;  vision and co-ordination can also be affected, along with balance, concentration and a change in character – in Chris’ case, a very short temper.

“I used to be a very patient man so I would hardly ever lose my temper and I now will lose it quite daily,” says Chris.

Chris’ voice is a rare one; usually the story of dementia is told by the carers, not by the person living with the disease and that’s why Chris is so passionate, while he can, to raise awareness, and help others.

And it’s his commitment to awareness-raising that convinced him to allow us to follow him, for nearly two years, to show us what life’s really like behind closed doors, living with dementia.

So we headed off to Rhuddlan in North Wales, to meet Chris, his wife Jayne and teenage daughter Kate; using small hand-held cameras, we began to film Chris’ everyday life, from shopping and peeling potatoes to building and hanging a huge wall map –not forgetting numerous trips to speak at conferences.

Throughout, Chris would explain to us how his dementia was affecting him, and how he was coping with it– from severe anxiety, to visual problems; balance to, memory.

But if he hadn’t given us a running commentary, we would never have known he was so good at adapting, if he couldn’t do something, he’d simply find another way around it.

And that’s just how Chris liked it constantly adapting through life, he’d spent the last five years successfully covering up and working round the creeping signs of his dementia, so that until recently, no-one would know – unless he told them.

“I’ve always been a master blagger,” explained Chris. “I want to present as normal as I can I want to remain as normal as I can for as long as I can,  so I'm becoming quite good at that too, very good at it!”

Chris’ incredible ability to cope and find solutions around his dementia was truly astonishing; but it left us with a problem: how were we going to illustrate the many difficulties that Chris was telling us about?

That’s where the CCTV came in, within weeks our technical team installed seven home CCTV cameras, along with highly-sensitive microphones, in the downstairs of Chris’ home, recording 24/7.

The results were incredible, before long we were witnessing for ourselves the difficulties Chris was telling us about.

Chris regularly would open every cupboard in the kitchen, looking for a mug or glass; Jayne would routinely come in later and close them all.

“I don’t know where anything in the house is anymore,” he says.

“It’s like someone’s moved you out for a couple of years and moved you back in again. I just have no memory of where things live anymore. I have to open all the drawers and cupboard doors and search for everything these days.”

On other occasions, we see Chris not knowing his way to the toilet, or upstairs.

“I can get lost in my own house,” says Chris. “ I can walk into a room and nothing is familiar about it, it’s really confusing when you get lost in your own house.”

We also left Chris and his family a handycam and Chris would regularly pick it up and record little video-diaries, by way of direct advice, to other people diagnosed with dementia.

We continued to film the family’s key events, to create an honest and revealing insight into their lives told very much through Chris’ eyes, and with his intention to inform others, uppermost in our minds.

It’s been almost two years since we started filming with Chris and his family. In that time, we’ve witnessed the disease’s progression first-hand.

They’re a remarkable family – baring their lives and souls to the cameras, at one of the most vulnerable periods in their lives, how many of us would allow CCTV cameras in our homes?

But they have always put up with us – and our cameras – for the greater good of informing and helping others with dementia, to give a true portrayal of what life is really like.

Chris is keen not to frighten people; he has been through some truly difficult times, but has met all his obstacles with his trademark good humour and optimism.

“There's nothing I don't miss, but there are new things I can do now you’ve got to look forward, never back. Concentrate what you can do not what you can’t.”

Many of the glimpses of Chris, Jayne and Kate’s lives are startling in their honesty; they have never flinched from telling it “as it is”. But they’re keen to stress that it’s not all bad.

“It is all changing, it’s changing quickly but what can you do?” says Kate.

“We have so many laughs, like, we don’t laugh at dad, we laugh with dad, but there’s so many things that have happened because of it which have, like, given us extra memories, so it’s not all doom and gloom.”

And Jayne is passionate about living for the moment – while they all can.

“It is so, so important to make the very best of the time that we have got and we have to enjoy ourselves because otherwise we’re going to be sad, we’re definitely going to be sad later on, let’s not be sad now and, and bring it too early.”

As for Chris, he has an important piece of advice for anyone living with dementia:

“Don’t be scared.  Don’t be scared.  Live life.  Take it by the danglies and run with it!”

A humbling philosophy for us all, whatever we may be facing.

Maria David is a Producer in BBC News

 

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