“Sorry, does my dad have a disease, or have you just met him?” I said to the neurologist when he first told me a list of my dad’s symptoms and diagnosed Pick’s disease, a rare type of dementia.
For a while now, I’ve been doing a one-man comedy show about my family. Part of the show is about my father. He has Pick’s Disease, a frontal lobe dementia, the symptoms of which include uncontrolled swearing, inappropriate behaviours, irritation, mood swings, apathy and extreme impatience.
When the neurologist told me that list of symptoms, I said, “Sorry, does he have a disease, or have you just met him?” This is a man, after all, who once, on a family holiday to Devon, farted so badly in an antique shop that we had to leave the shop. When we returned in the afternoon, the shop was shut, because the owner had been taken to hospital.
I use comedy to talk about my father’s dementia, but the statistics are no joke – it’s the UK’s biggest killer.
In a show about how you remember people, my dad’s dementia creates a related issue, which is how much you can remain the person you once were without memory. Memory, after all, is where we store our personality. We say ‘memory bank’, because it is where we invest ourselves, it contains all our data: and dementia, surely, is the most terrible, the most complete hacker. But actually, my dad has not been stolen from us by dementia. Certainly, when the disease first hit, entirely the opposite: it turned the volume up on his personality, transforming Colin Baddiel into a kind of spitting image puppet of himself.
Still surrounded by silence and shame
When I meet members of the audience afterwards, or they contact me on Twitter, they are keen to tell me their own stories. Ruth Langsford, after an interview on This Morning, told me about her dad, how in the ‘90s, a doctor had asked him, as a dementia test, who the Prime Minister was. “Blair!” said Mr. Langsford, immediately, leading everyone to think maybe he was fine after all. “Lionel!” he then added. Dementia is the UK’s biggest killer, yet the fact remains that dementia is a condition surrounded for too long by silence and shame.
All these stories, of which these are only a fraction, are funny – and, as a result, I have started to tell some of them in the show – but they are also, of course, sad and poignant. But this is the liberation, that having a parent who has dementia need not be surrounded in shame and silence; and that there may be a way to break that silence through comedy.
I’m just a comedian and writer. I don’t campaign and I don’t actually do the really hard work of caring or interacting with people with dementia, beyond my own family. However, last year, Alzheimer’s Society did me the honour of making me an ambassador and through them I met Peter Lyttle.
He is a perfect example of someone with the disease who doesn’t fit the stereotype: he’s chatty, insightful, self-aware and full of stories, including many about what day-to-day life with dementia is like. He told me how he struggled to come to terms with his diagnosis and remembered standing in front of a cash machine trying to work out what it was and why he was there, with people around him tutting impatiently. He felt like that he no longer had a role to play in the community he had lived in most of his life – thoughts which left him feeling like he wanted to end it all.
Too many people with dementia face the same challenges, making them feel alone without adequate support from those around them. Simple actions, such as including people with dementia in conversations, and asking them if they need help if they seem confused, make a huge difference to their lives.
This Dementia Action Week (21-27 May) have a look online at what actions people with dementia have shared with Alzheimer’s Society. Any action you can take, that engages with the stories and the lives and the still-present personalities of people with dementia is immensely appreciated. May you never get dementia: but if you do, may society by that time recognise that you are still you.
Alzheimer’s Society Ambassador, David Baddiel, is urging people to get involved this Dementia Action Week and unite against dementia by visiting alzheimers.org.uk/DAW