There Is Life after a Dementia Diagnosis

HEALTH, 22 Dec 2014

Rebecca Ley – The Guardian

Our ageing society urgently needs to replace stigma with understanding, and ostracism with acceptance.

They live among us – drinking tea, watching television, smiling more on sunny days. Many of them still drive, push supermarket trolleys, and prop up their local bars with a pint. They are our friends, our colleagues, our neighbours and our loves. And one day, if we haven’t already, we may well join their number. But although many of the nearly 850,000 people in the UK with dementia are seen, their voices are seldom heard. Their cards are marked, and they are bound for a destination we prefer not to dwell upon.

With one in three people over 65 now dying with dementia, and the number of sufferers set to rise to more than 1 million by 2025, something needs to change fast in our communities.

The urgent requirement of becoming a dementia-literate society was addressed by Joan Bakewell in her programme Suppose I Lose It? on Radio Four on Tuesday night. Bakewell, in her early eighties, admits that her own memory is failing, and was prompted to ask what she might expect if she were to receive a dementia diagnosis. Her search was spurred on by the struggle of her friend of 40 years, Prunella Scales, whom she interviewed movingly. Scales’s voice was a revelation: slightly slowed but still grand, full of warmth and wit. It immediately shredded any notion that her Alzheimer’s diagnosis – revealed only last year but made a surprising 15 years ago – has erased the person she used to be.

While her husband, Timothy West, talked quietly and sadly of how she would repeat the same question to acquaintances when they went out, or forget ingredients when she was cooking, Scales rebutted him, offering to fetch the sultanas from the kitchen immediately, should he need proof she knew their location.

What lingered was the sense of support they had for one another and of a marriage that was still very much alive, despite the changes to her memory. We need more of this kind of broadcasting, to shine a light into the abyss. In the past, eminent dementia sufferers such as Harold Wilson, Margaret Thatcher, Iris Murdoch and even, until last night’s programme, Scales herself, have tended to melt from public view. It’s not articulated fully, but the sense is somehow there that this sort of fading away is better for all concerned. They can fall apart in peace and we can avert our eyes from the horror.

But people with dementia don’t disappear overnight, much as we might secretly like them to. They don’t immediately start babbling, wandering around in their underwear or putting their keys in the kettle. Many of them, like Scales, will have a significant chunk of their lives to live, post-diagnosis. Too many people, like my father, who died of the illness just over a year ago, are being let down because of a collective reluctance to admit the scale of our problem. Partly because of the stigma, he wasn’t diagnosed with his vascular dementia until it was at an advanced stage; he died just three years later.

But for so many years prior to that, there had been signs, if only we, his family, had known what they meant. He became more forgetful, yes, but there were other changes too. His arguments – about politics, cars, house prices – became less cogent, his disposition less charming.

I remember spending a summer 15 years ago working in his car dealership, a business he had built up from scratch. I was bemused by what he did all day, which seemed to be little more than eat Kit Kats and hide behind the local newspaper.

That was long before the dark, care home days of double incontinence, shouting and confusion. But looking back, it’s obvious that the man wasn’t on top of his game. He was going through the motions of the life he had built for himself. It hurts to think that he was perhaps already struggling in some way but valiantly trying to conceal it.

Still driving, increasingly erratically, he used to go almost daily to his local police station to ask for help. I think he wanted someone in authority to help, to stop the nightmare in his head. And while the cruel fact is, nobody can do that yet for any dementia sufferer, it is not an excuse for apathy. As Bakewell highlighted, we need to build communities that are dementia-friendly. Crawley Town, for example, has trained bank managers, bus conductors and waitresses to recognise the signs of dementia, so that they know how to approach sufferers and don’t ostracise them. They have taken people with dementia into schools so children learn to understand the condition.

Most important is to prevent isolation. This is such obvious good sense, it should happen nationwide immediately. After witnessing the shame and loneliness of my father’s disintegration, I’ll admit a vested interest. But the chances are, most people will at some point be grateful too.

Go to Original – theguardian.com

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