"Dementia is much more than brain damage"

I'm interested in ageing and older people in general. I took a degree in English Literature and was intending to do a doctorate at Oxford but I wasn't quite sure and I went to work in an older people's hospital. I worked as a nursing assistant and I loved it, but I thought they were wrong in the way they treated the residents. I thought I would like to change that and I retrained as a nurse, working for ten years in the profession. Afterwards I went back to university and trained as a researcher in the Social Sciences. It's a big challenge but it is seen as a war, as a great enemy, which I think is a mistake. I've spent a lot of time working with people who have dementia and this kind of thinking can be a serious problem. That's why I'm interested in finding new ways to think about it and tackle it. Medical treatment is very important but I think we need to see dementia as a way of living in the world. There's a lot of fear of dementia, of any problem that affects people's mental capacity. When you work with people who have dementia, and scientists confirm this, you have to remember that the brain works in an extraordinary way. A person who loses some abilities can gain others. For example, someone who was not musical might become interested in music, although they now have difficulties with language. It's fascinating. Some years ago I was head of nursing in a hospital and we had cases of people who had recovered from a serious medical condition, such as a heart attack, but we realised they had Alzheimer's. They couldn't go home and they were shut up in a hospital, which is not a suitable environment for these people at all. The fact is they were terribly upset and disoriented by being surrounded by the chaos there was in the hospital and by the way some people wanted to make them understand the reality of their situation, even though they were living a different reality. We started to pay more attention to their needs, to understand what concerns they had and tried to understand why they did certain things. There was a woman, for example, who got up every morning and said that her mother had just died. For her it was as if her mother had died each morning. We found ways to enter her world, even though we were in a hospital. Trying to make her understand that it was not the morning when her mother had died didn't work. First we made her feel that her mother was at home with her. For example, if I had to move some pieces of furniture and she told me that I couldn't do it, I said: "Don't worry, your mother said we could do it, don't you remember?" Little by little, I spoke to her about her mother's death, the funeral, which had gone well... And she became a lot calmer. Although she was still in her own world, she started eating and sleeping well and didn't have to take medication. We entered her world. At present a lot of effort is devoted to diagnosing the condition, so that it can be detected at an early stage. A scan can show a brain seriously affected by the condition when the individual shows no signs of suffering from it. We are at an extraordinary stage in our studies of how the brain works - and I think that's very important - but at the moment there is no cure for the disease.

Parallel to these studies, I think it's important to try to help people to understand the relationship between the person with dementia and the world, to minimise the effects of the illness and help the person to live a more or less full life. Music is an extraordinary element in this context. Some studies have shown that, with music, we can create a world that helps the person to remember what their previous life was like. Oliver Sacks, who is a fantastic neurologist, has done extraordinary work in this field. We've seen cases of people with very severe dementia and, when you put on the music they used to enjoy, they're suddenly wide awake, they start talking... It's extraordinary. We don't know scientifically why it happens, but music certainly has very important effects.

Music is also very useful when people with dementia are agitated. Another way of helping them is for them to make music together. In Cardiff, the Welsh National Orchestra has the Forget Me Not Chorus, a choir formed by people with Alzheimer's: it's fantastic what they can do together. And it has very profound effects on those people: they see that they can participate, be present as individuals. This is a difficult question because each case is very specific. We need to look for alternative solutions for some of the problems that arise. It's true that the last stages of Alzheimer's are terrible, the brain functions are lost... But that can happen after many years. Like any other chronic illness, especially those affecting people's capacity, you find ways to cope. And the life of a person with dementia and their carer will be very different depending on how you deal with the situation. It's like what happens with a horse: if you try to push a horse that doesn't want to move, it pushes backwards. But if you look for alternative approaches and learn to have a full life with the person despite their dementia, everything can be different.

You need to maintain the hope that you can still have a life. It's the same as with cancer. Some years ago, when you had cancer diagnosed, you said. "That's it. My life's over." But now you can have cancer and you could live for another twenty years. Yes, it's a big problem. But sometimes you can find them again. For example, one woman told me that she took her mother dancing, an activity she used to enjoy a lot before she had Alzheimer's, and when they were dancing her mother was the person she used to be again. In a sense, she got her mother back. Sometimes you have to do it. For example, when a person with dementia wants to go for a walk, they're likely to get lost. What do you do in that case? Do you shut them up in the house? What role can the local residents play? In this case, you have to take a risk. You can't shut someone up in the house. I saw a fantastic play where the wife left her phone number in her husband's jacket pocket with a message that said "Please phone me, my husband has dementia." Then if someone found him they could call her. You can't take all a person's freedom away. Relations with the local community are important; you need to be able to trust your neighbours. In some modern cities this isn't the case. Medicine locates the condition in individual bodies but we can look at things from another viewpoint: the relationship between those bodies and the social world. A simple example: most doors used to have a handle designed for right-handed people and if you were left-handed you had problems. In the social sciences, we think that there is a very closed idea of what it means to be a person. We should consider the idea that dementia is much more than brain damage.