A few years ago as I wandered along a London street looking for a parking ticket machine, I saw an immaculately dressed, petite blonde I recognised. “Hi,” I said. “Hello,” she replied, giving me her trademark beaming smile. It was only then that I realised the woman was Barbara Windsor – familiar, yes, but not known to me at all. She could have ignored me (goodness knows how often this must have happened to her), but instead she graciously, kindly, considerately, put me at my ease. Now it’s our turn to do this for her.
For the 80-year-old actress, famous for countless Carry On films and, latterly, EastEnders, has Alzheimer’s disease. Four years after she was diagnosed and as her symptoms become more pronounced, her husband Scott Mitchell has decided to let the world know so that if, when she’s out and about, Barbara acts uncharacteristically, people will know why and “accept it for what it is”.
This is so, so important. When entertainment royalty such as Dame Barbara Windsor go public about their dementia it makes headlines, generates discussion, raises awareness of a condition which, despite being the biggest killer of women in the UK, despite afflicting 850,000 people and despite costing the country £23bn a year, is still much misunderstood and shrouded in stigma.
In less than 48 hours Scott Mitchell’s announcement has projected the topic into everyone’s lives. All the national newspapers carried the story, many with double-page spreads. Yesterday evening Radio 4’s PM programme ran a lengthy interview with Formula 1 racing legend Sir Jackie Stewart, whose wife Helen has frontotemporal dementia.
He spoke informatively, fluently, personally and courageously about what Helen’s illness has meant for them in ways that will resonate with thousands of families up and down the country. He described how, because of the wealth he’s accrued, he can afford specialist nurses for his wife whereas others, less affluent, less fortunate, cannot. Staggered to discover that there is no cure, Sir Jackie has launched a charity, Race Against Dementia, to fund research into the condition.
On the BBC Breakfast television show a panel including author Wendy Mitchell, who lives with Alzheimer’s, discussed Barbara Windsor’s diagnosis. In just a few minutes several key points were beamed into households the length and breadth of the land. The main, crucial, message being that with more knowledge of the condition, the public could better appreciate how it affects those who have it and show them more tolerance, more patience, more understanding.
Presenters Charlie Stayt and Naga Munchetty were well-informed about dementia and its broad-reaching impact on, not just the individual involved, but his or her family – no doubt aided by their previous encounter with Wendy Mitchell, who appeared on the show earlier this year talking about her book, Somebody I Used To Know. They knew the right questions to ask – and they had the right people providing the answers.
I don’t know if she’s fully aware of it, but Wendy Mitchell is a journalist’s dream. She speaks in near perfect (and unusually sensible) soundbites. I say this – I hasten to add – in a spirit of awe and appreciation. It is one of those things that seems so easy yet is very, very hard to achieve, particularly on live television in front of 1.5m viewers.
“Dementia is like a cruel game,” she said. “Some days it throws a curved ball at you but because I’m such an optimistic person I say that tomorrow might be better. If you dwell on the sadness of bad days, it is a day lost of happiness”. A day lost of happiness. Her inversion of the words merely adds to the power of the sentiment.
Wendy’s fellow panellist Simon McDermott sprang to the nation’s attention two years ago when he uploaded YouTube videos of his father Ted (who has Alzheimer’s) singing in the car. The films soon went viral and the Songaminute Man was born; Simon’s Just Giving page has to date raised over £130,000 for the Alzheimer’s Society.
Picking up on Scott Mitchell’s desire to let others know about Barbara’s condition so that they can understand her behaviour, Simon spoke of strangers’ kindness, of how they became more considerate and mindful of his father’s behaviour once they understood the reason for it.
Kathryn Smith of the Alzheimer’s Society added that if people understand about dementia they can look out for each other so that communities become dementia friendly. “A little bit of kindness doesn’t hurt anybody”.
“It’s being people friendly”, added Wendy, accurately, succinctly – before, just for good measure, charming us all with one of her most endearing smiles.
On Radio 5 Live’s Breakfast Show Charmaine Hardy, wife of 69-year-old George who was diagnosed with a rare form of dementia called Primary Progressive Aphasia a decade ago, spoke eloquently about how it had affected both their lives. She stressed that George’s memory was still perfect, which may come as a surprise to anyone who thinks that dementia is all about forgetfulness. But her husband cannot speak or understand what is said to him. He has lost his sequencing and problem solving skills, so cannot clean his teeth, feed, wash or dress himself and were he to come across a gate, he wouldn’t know what to do.
George, she told listeners (2.2m tune into the Breakfast Show each week), had been a top scientist. Now Charmaine cannot turn her back on him for a minute for fear of what might happen. When presenter Nicky Campbell asked her how it was for her, she paused and we could hear her intake of breath. “It’s not easy, but I do my best for him”. How much emotion was contained in those few words. And, importantly, how much knowledge of this rare, less spoken of dementia, did this thoughtful, caring woman impart to the rest of us.
In an echo of the devastating condition itself – whereby a single diagnosis has an overwhelming impact, on not just one individual but an entire family – when a celebrity and his or her loved ones decide to go public with a dementia diagnosis, the benefits ripple outwards, causing a cumulative, positive effect.
It is all part of the soft power of culture. Slowly but surely as more and more of those in the spotlight choose to speak out – think of author Terry Pratchett, actress Prunella Scales (who, together with her husband Timothy West, has featured in seven television series about the couple’s canal boat trips following her diagnosis), Sir Jackie Stewart and his wife Helen – the public’s knowledge and awareness of dementia grows, silence gives way to understanding, fear subsides, stigma fades.
The famous have a platform and unrivalled power to use their well-trained voices. But dementia – as anyone who has it or whose loved ones have it, knows only too well – is also very personal, involving complex, competing emotions. It takes a brave spirit to talk out.
Fifty-five-year-old Scott Mitchell expressed this in the Times when he explained that, though his wife was aware that he was making her diagnosis public, Barbara may forget she gave him her blessing to do so. In which case, he said, “I’ll just have to deal with that”. Along with everything else – the frustration, grief, anger, bewilderment, exhaustion and guilt – which, you and I know only too well, he is going through right now.