Three years ago, I took part in a unique reality TV experiment: I was invited to have lunch at The Restaurant That Makes Mistakes, a pop-up cafe staffed entirely by people with dementia.
It was – and yes, I understand the irony – an unforgettable experience. The food was provided by a Michelin-starred chef.
But it was maitre d’ Peter Berry who made the day, for me – not least for unashamedly not recognising the celebs, including Downton Abbey actor Huge Bonneville and comedian David Baddiel, who turned up to eat.
After serving my starter, Peter came over with the pudding menu. ‘I’m going to have my main course first,’ I laughed.
‘It’s better than not asking at all,’ he shot back.
The Channel 4 show aimed to destigmatise dementia, which is a good idea, as it’s something that will affect more than one million Britons in the next few years.
Few could fail to have been touched by the warmth and charm of the unlikely stars.
And during the pandemic, I wondered how Peter was coping – so a few weeks back when I was invited to talk to him about the charity bike rides he’d been undertaking since we last met, I immediately said yes.
Peter was diagnosed with Alzheimer’s seven years ago, aged 50, and was forced to sell the family business, a sawmill, where he’d worked since school and inherited from his father.
The vast majority of dementia sufferers are in their 80s, or older, but roughly 40,000 Britons, like Peter, have early-onset disease, which develops before 65.
As he struggled to read and write, daughter Kate, now a 26-year-old hairdresser, encouraged him to record a diary on YouTube. His videos were spotted by Channel 4 producers.
Three years ago, I took part in a unique reality TV experiment: I was invited to have lunch at The Restaurant That Makes Mistakes, a pop-up cafe staffed entirely by people with dementia. It was maitre d’ Peter Berry (right) who made the day, for me – not least for unashamedly not recognising the celebs, including Downton Abbey actor Huge Bonneville and comedian David Baddiel, who turned up to eat.
Since the show aired, he has raised £23,000 for the Young Dementia Network and Alzheimer’s Research UK, by cycling from Aberystwyth in the west of Wales to Aldeburgh on the Suffolk coast and doing a Four Counties challenge on a penny farthing. He is now planning to try abseiling.
He has written two books on dementia – one is on the curriculum for the University of Hull and Bangor’s MSc course in dementia studies – and is a regular guest on Radio Suffolk.
‘We have achieved a lot, I think, though I can’t always remember what we’ve achieved,’ Peter jokes when I ask him about all this, but adds: ‘Having a purpose is a very important thing for everybody.’
Covid hit people with dementia hard. A quarter of those who died from the virus had dementia, and lockdown had an equally profound impact.
People with dementia in old people’s homes were barred from seeing loved ones and in 2020, non-Covid dementia deaths spiked by 50 per cent – campaigners said many, believing their families had abandoned them, simply gave up.
The ever-changing rules also caused a huge strain on people with dementia living in their own homes.
Apathy, irritability and anxiety, fuelled by lack of social engagement, were reported in studies of patients and their families.
Could this make dementia itself worse? Yes, says Professor June Andrews, an expert in the care of older people.
‘Depression and loneliness can make dementia symptoms worse,’ she explains.
‘Not being able to go about our lives was bad enough for most people. But it would have been particularly stressful and confusing for some with dementia.’
The good news is that as things get back to normal, some of the lockdown-induced deterioration could improve, adds Prof Andrews.
When we meet, at his home in the village of Friston, Suffolk, Peter’s wife Teresa, also 57, says they feel they got off fairly lightly.
‘During the first lockdown, the weather was so lovely. We went cycling and we have our garden. So from my perspective, it wasn’t that bad. But as restrictions began to ease and we could meet a few more people, Peter had forgotten some of them.’
On the surface, Peter seemed unchanged. But he has no recollection of our first meeting.
Peter Berry was diagnosed with Alzheimer’s seven years ago, aged 50, and was forced to sell the family business, a sawmill, where he’d worked since school and inherited from his father
He couldn’t tell me what he’d had for breakfast, but then regaled me with anecdotes from his days at the sawmill, and recalls the time his father met Margaret Thatcher.
‘I forget many things,’ he says. ‘But I remember things that happened a long time ago.’
To sit and chat to Peter, you’d be hard pressed to know anything much was the matter. But he seemed aware that the illness is gradually whittling away at him.
‘The first year I did my cycle challenge from Wales to Aldeburgh, I knew the route and felt as if I had my finger on the pulse of what was happening,’ he says. ‘
A year later we did the penny farthing ride and I never knew where we were. I got on and followed everybody else.’
Peter and Teresa try to live life in the moment, but it is tough. Peter ‘bottles up his feelings’, says Teresa, who admits she ‘cries almost every day’.
They rarely leave home for long, now. ‘Peter finds it hard,’ says Teresa.
‘He’s happy to potter in the garden but if he’s in an unfamiliar environment, he gets much more confused which is heartbreaking.’
Teresa noticed that Peter was struggling with his memory when he began relying on Post-it notes to prompt him and began to get lost while driving to familiar places – he has since given up his licence.
Today he is on the drug donepezil, which affects levels of chemicals in the brain and has been shown to help lessen forgetfulness and confusion in some people with dementia.
But Teresa admits things have gradually worsened.
‘He repeats himself, because he doesn’t remember if he’s said something. And if you ask him what he’s been up to, or where he’s been, he won’t really be able to answer.
‘But he knows if he’s had a good time – that’s a feeling that doesn’t go away. And that’s my focus, making sure he’s got something to smile about.’
Peter says: ‘After we were diagnosed – and I say “we” because it affects the whole family – it took me a while to get my head around it and cope with the depression. But then I had the idea that I wanted to help others to live well.
‘I wanted to challenge myself for as long as I could to do something different that would push the boundaries. I achieve more now than I did prior to the condition because I’m trying to pack more in.’
Teresa adds: ‘It’s made me realise what’s important. If you gave a million pounds, it wouldn’t make a difference to me. Well, I mean, it’d be nice I won’t lie.
‘But it couldn’t give Peter his health back – and really life is about the small things, like being in garden or cycling together. That’s what matters the most.’
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