Dementia Health Integration Team (HIT) Project Manager Julie Clayton on how attitudes to dementia are being challenged by projects like the Restaurant that Makes Mistakes. Members of the Dementia HIT advised the programme's producers.
Do your family worry that you are a danger to yourself? Do people assume that you can’t do anything useful? This can be a daily experience for people who are living with dementia.
Having to deal with other people’s attitudes towards dementia is a challenge for those who have the condition. Despite this, many people with dementia are determined to enjoy life and show others what they are capable of. And some are even willing to appear on TV to prove it.
Take Sandi, a member of the Living Well with Dementia group, which met recently in Weston Super Mare. Sandi was only 50 when she was diagnosed with dementia four years ago. The condition is best known for causing short-term memory loss, but it has also affected Sandi’s speech and balance, forcing her to to give up her job as a mortgage broker, and other activities.
“I have been advised to stop dancing. And I stopped volunteering in hospital because I fall over a lot.”
Undaunted, Sandi will soon be appearing on our screens in a five-part Channel 4 series about a pop-up restaurant in Bristol, ‘The Restaurant that Makes Mistakes’. Filmed at the Kitchen at the Station with chef Josh Eggleton, the series will feature Sandi and other people who have dementia, taking on the role of waiters and kitchen staff.
Taking part has been a real confidence boost. Sandi says:
“The whole point of the restaurant was to show that people can still work, whether it’s the coffee machine or doing kitchen or doing front of house. I find that I can do a lot of things. I can use a coffee machine, and all that involves. Someone said I couldn’t do it. I’ve proven that I can.”
“It shows that people living with dementia can still learn new things and adapt. You can transfer your skills and do something that’s not necessarily what you were doing before,” says Hayley Pope, Dementia Friendly Communities Coordinator for the Alzheimer’s Society in North Somerset, who supports the Weston group.
Sandi and other group members have experienced “a whole array of attitudes” towards their dementia, some helpful, some unhelpful. They know too well the impatience of bus drivers who drive off too quickly, and shop staff not realising that they may need extra time or assistance.
The invisibility of dementia is partly the reason. “A lot of people don’t know––they just accept you for what they see. Family are very supportive and aware but for members of the public you’re just an ordinary person going by,” says one group member.
The group readily acknowledge, however, the pressure that other people can be under. “We live in a very busy society. The bus driver doesn’t have much time – he has to get to the next stop. It’s not always that individual, but in society, everything’s moving faster,” says one member who cares for her husband with dementia.
Sometimes the challenge is to manage family concerns. As one group member put it: “They come and perhaps the house is not quite as tidy, so they can see a difference and suddenly they start to worry.”
For Sandi, other people can worry to the point of becoming overprotective. “It makes me feel small… as though I’m not worthy”, she says.
A new survey is attempting to capture people’s attitudes to dementia, whether that's good understanding, ignorance or even fear. Led by psychologist Professor Richard Cheston at the University of the West of England, the online survey of Attitudes to Dementia is open until the end of March. The study is a follow up to one carried out in 2013, which showed that older people are more likely to show fear of dementia than younger people.
Hayley, facilitator of the Weston group, has seen fearfulness in people's reactions. At public events, “People walk by and say ‘Oh no, not me just yet!’ When you approach they’ll say ‘No I haven’t got it’, as though it’s something dreadful. There can be a great deal of hostility to the idea of it - not the cause - but the fact that it’s something that might be close.”
“The fear that somebody feels – what will happen - I can understand it but I can’t help thinking that we just have to live as we are,” says one member of the Weston group.
Another reveals that in his experience as a retired clergyman, it makes little difference that he has dementia:
“Occasionally I read the scriptures in the Sunday service, and I sing in the choir regularly. I don’t know how many people in the church know I’ve got dementia. It doesn’t change very much what I do.”
Acceptance and getting on with life is an attitude shared by many people with dementia and their carers, according to Hayley:
“It’s very positive and very practical––nobody wanted this to happen, but this is how we get on with it. You’re life doesn’t change from the day before you’re diagnosed to the day after you were diagnosed. You are living. You haven’t changed as a person.”
Image: Staff from the Restaurant that Makes Mistakes with Bristol Mayor Marvin Rees. Image credit Anna Molter.