Peter Berry was diagnosed with young onset Alzheimer’s disease four years ago at the age of 50. He recently took part in the filming of Channel 4’s The Restaurant That Makes Mistakes. He reflects on his experiences alongside his wife Teresa.
‘They contacted me through my weekly YouTube blogs,’ Peter explains ‘and within a couple of days some people from Channel 4 were standing at my door, inviting me to participate in the show. I had to say yes because this felt like a great opportunity to change people’s perception of dementia as well as raising awareness of the condition on a bigger platform.’
From Teresa’s perspective too, there was the prospect of meeting others in a similar situation. Having lived for some time within the devastating isolation that a diagnosis of dementia creates for all family members, the opportunity to share these experiences with people who really understood was too good to turn down.
‘We’d been shouting about dementia from a molehill but now we were going to be able to shout about it from atop a mountain,’ says Peter.
From running a successful timber business to working in a restaurant is quite a change of direction. What was Peter’s role in this project and how could his existing skills could be used to good effect?
‘I worked as front of house,’ Peter explains. ‘I suddenly realised that my old skills of running a business hadn’t been taken away, despite the dementia, and I was able to draw on those to really good effect. So, for example, I realised that no one ever thought to close the front door of the restaurant and that the heating costs were escalating. Little things like this, being aware of cost efficiencies, are really important in running any business.’
Since Peter’s diagnosis, some four years ago, he’s been forced to give up his business as well as many of the things which most of us take for granted. Suddenly, by taking part in the filming, Peter found he was re-creating some of the experiences of his old working life.
‘I’ve always been active,’ Peter says, ‘so physically the work wasn’t challenging. But it was tiring for my mind. In some ways it was frustrating because I remembered being able to do so much more mentally. And I found the reading and writing hard. But I also found ways around it and we had great support from Josh Eggleton, the professional chef on the programme. But the best thing was that we were all able to support each other, and some of the group hadn’t ever experienced such peer support.’
‘Do you know what? They used to change the table layout,’ he says, but being Peter, he finds it amusing. ‘I think they did that to see how we’d react. To see how we problem solved! But there are no problems, only solutions.’
Both Peter and Teresa are vociferous and active proponents for highlighting the inequalities families are confronted with when living with young onset dementia. They hope that this television project will raise awareness of dementia and the discrimination that those living with the condition face around employment.
‘If we can change employers’ perceptions of those with the condition, says Peter, ‘if we can prove that, with the right support, there are jobs there for people with dementia, then that would be quite something!’
‘It’s discrimination,’ adds Teresa, ‘and it’s not even about the money, it’s about giving people a sense of purpose. And it’s about really helping their families.’
‘It will be a great asset for any company,’ continues Peter, ‘and I’d say don’t just employ one person with dementia, employ two or three. That would remove isolation and we’d be able to give each other great peer support. How cool would that be?’
Peter firmly believes that removing the discriminatory barriers which face those living with dementia and creating the opportunities for employment will be a life-saving project. But more than that, he believes that companies will also be the beneficiaries if they were to take a little more effort to be inclusive and non-discriminatory.
‘Any company that creates opportunities to employ people with dementia will be seen as a caring company and more likely to get further business. Maybe the government should subsidise businesses who are actively involved in creating dementia friendly organisations.’
The journey that Peter and Teresa undertook each week from Suffolk to Bristol was an arduous one and took an emotional, mental and physical toll on both of them. So would they do it again? Both are vehement in their positive responses.
‘It gave me a real sense of purpose and so many opportunities but mainly I just had a really great time. They say you only live once but I say you only die once. You live every single day and taking part in this project was just another fantastic opportunity for me,’ says Peter.
‘I always say that life isn’t over with dementia, it’s just a little different. And working in a restaurant like this just goes to show we aren’t on the scrap heap just yet but really have something to offer to employers if only they would work with our differences.’
- With grateful thanks to Deb Blunt, who interviewed Peter and Teresa on our behalf.