What’s orange and sounds like a parrot? A carrot! According to my five-year-old son, this is the ultimate joke and he tells it several times a day. Less amusing are the jokes I’ve experienced throughout my five years working at Alzheimer’s Research UK with dementia used as a punch line.
I try not to be po-faced; humour is an important way of coping with adversity, and the British way of doing things. I hear from many supporters that they have had to laugh at the everyday challenges of dementia, or else end up crying. When my mum suffered a heart attack last year, the only way I could cope with seeing her in a hospital bed was to poke fun with her and Dad.
But I do get frustrated by the casual jibes about dementia that I hear out and about. A few months ago Alzheimer’s Research UK ran a public meeting in a city in the southern half of the country and I was presenting about our work. It was a sweltering day, my sat nav had packed up and I arrived at the venue perilously close to the start time, carrying heavy boxes of materials and feeling hot and irritable. As I checked in with the receptionist, he commented “it’s a wonder you can remember where you work!” Seeing red, but remaining as professional as my temper would allow, I had a quiet word with him.
I hear from many supporters that they have had to laugh at the everyday challenges of dementia, or else end up crying.
I wonder whether, had I said I worked for Leukaemia Research, or the British Heart Foundation, he would still have made a joke. Why is dementia fair game? I think partly – and I only have anecdotal evidence for this – dementia is still not thought about as being caused by diseases. Rather it’s that bit of dodderiness we all experience as we get old. It’s just the funny things that Auntie Mabel says. It’s a perception that means dementia sometimes finds itself not taken seriously, so we point and laugh.
There is still a job to do to get across exactly what is going on in diseases like Alzheimer’s. It seems we’re able to understand cancer as a pathological process – we know that cells start multiplying out of control and the damage is wrought. In Alzheimer’s (and dementia with Lewy bodies, and frontotemporal dementia and others), the opposite happens. Cells die. After death, the brain of someone with Alzheimer’s can differ in weight from a healthy brain by as much as a grapefruit. This is not dodderiness.
People don’t generally go out to offend, so I know that the receptionist meant no harm. And I wouldn’t make many friends by lecturing every poor soul who fires a misplaced joke. Thanks to initiatives like the Prime Minister’s Challenge on Dementia, which is helping push dementia into the spotlight, we can hope for improvements in public understanding, and a better appreciation of the seriousness of dementia. I suppose until then, we’ll have to continue to roll with the punch lines.