What is dementia? It is rarely like the word it’s been given. Dementia: such a pretty word, with that soft, sweet ending like the swishing of a tail or a skirt. Even apart from its spelling and sound, “dementia” has been broadened into an unthreatening meaninglessness. How much more frightening the word “demented” is, because it conveys what dementia is really: the violence of brain damage. It is a physical assault on the brain, whether it produces the kind of dementia that films and media like to portray, a benign forgetfulness; or whether it produces the kind that my family lived through when my stepfather lived and died with it: aggression, panic, fear and inexplicable loathing of people he had loved.
Look up dementia, and you will find umbrellas. It is usually called an umbrella term, because “dementia” covers all kinds of brain damage and disease: Alzheimer’s, dementia with Lewy bodies, frontotemporal dementia, vascular dementia. Most involve memory loss, personality change, the impaired ability to speak, connect, function. All dementia is thought to result from the impairment of brain cells, usually damaged by the formation of plaques and tangles, protein deposits that impede the normal functioning and communication of neurons. How the damage begins is still unknown, along with how to stop it.
One thing that dementia is not: it is not an inevitable part of ageing – 42,000 Britons under 65 have dementia. Something it is: the biggest health problem facing the country. About 850,000 people have it, and it costs us £26bn. However, it would cost more if dementia were treated as a medical condition rather than a social disease: as such, people with dementia and their families have to pay for any residential care that is – inevitably – required.
But all that is the straightforward stuff. How much harder it is to describe what dementia feels like. If people have it badly enough to convey its overwhelming power, they probably can’t speak lucidly about it. Terry Pratchett was the ambassador for articulate Alzheimer’s, but I recognised nothing of his lucidity, because for me dementia was the robbing of my dad’s voice and writing, the slow shrinking of his vocabulary, perhaps not even because he had forgotten the words, but because he was scared of getting them wrong. It was his daily freaking out at sundown – this is a common feature of dementia called “sundowning” – when he desperately hunted for his wallet and his money, and had to be taken upstairs, day after day after day for years, to be shown that his clothes were in his wardrobe. It was his increasing distaste for water, so that showering became a screaming match. It can be incontinence to a degree that many carers of dementia become far more intimate with cleaning up excrement than they would ever have wanted to be.
But perhaps I am being irresponsible. Mick Ward, head of commissioning for adult social care in Leeds, where I live, doesn’t find scaremongering useful. “It’s a tricky balance,” he says. “You want people to be aware of what may come, but you don’t want to scare people who have been diagnosed.”
I don’t want to scare anyone who has been diagnosed. Early diagnosis is controversial anyway, when our dementia care system has been woeful, when there is little to be done except provide a reference to a “memory clinic” and send people home. I hope times have changed since our experience, when the only “care” for an aggressive dementia patient was a locked, bleak assessment centre with no stimulation apart from heavy drugs (a “chemical cosh”).
Dementia has become much more visible in recent years, and I am thankful. Dementia UK’s Admiral Nurses – like Macmillan nurses, but for dementia – have just celebrated 25 years, and an Admiral Nurse, thanks to four years of fundraising and campaigning by my mother – is now in place in Wakefield, where my stepfather died so badly, and where we flailed in a confusing social care system. Leeds, where I live, is now a dementia-friendly city. I see dementia-friendly stickers on police cars, in libraries. West Yorkshire Playhouse recently won an award from the Alzheimer’s Society for its dementia-friendly performances (more appropriate lighting, better signage, understanding that noise can be alarming for people with dementia, providing a quiet room). There are now 1.3 million Dementia Friends across the UK.
But I still also see people confronting people with dementia, so badly, so frequently. No, your wife is dead, don’t you remember? I told you about that yesterday, don’t you remember? They don’t remember. The kindest way to talk to someone with dementia is to go along with their reality, and that is still not something widely understood. But it should be, and soon – because what dementia is, above everything, is now normal.
