Nursing support of families and carers of people with dementia

My name is June Andrews, and this talk is about "Nursing Support of Families and Carers of People with Dementia".

When you're thinking about what nurses must do in dementia care, a good place to start is the nurse's code of conduct. That's what defines all of nursing activity. And your code of conduct actually places a legal burden on you. You've got to work within that code. But when you're looking after people with dementia and their families, it's actually even more difficult than in other nursing areas to adhere to the code. And in fact, someone has said, "They weren't thinking about dementia when they wrote it." There are complications in dementia which are about consent, about the relationship that the families have with the patient, about the nature, the legal nature and the emotional nature of those relationships which nurses have to consider when you're supporting families.

The NMC Code, when you look at it, gives 25 statements about what good nursing practice looks like. And they take those statements under four headings. The code expects you to prioritize people, expects you to practice effectively, to preserve safety, and to promote professionalism and trust. And how is that difficult in dementia? Well, in dementia, you have to prioritize people. But if you think of an example where in a ward, an old patient, very elderly person is crying out. And all the other people in the ward are being disturbed by that person. Then sometimes there's a temptation to give her medication to make that person be quiet. In that case, you're not giving medication for her sake, you're giving her medication for the sake of other people. And so there's a real ethical and professional question there about whether or not in dementia care, you're prioritizing people. Who is the person you're prioritizing? And the same is true of a family, if the daughter says to you, "I can't sleep at night and I can't look after my mother during the day because I'm not getting any sleep". Are you giving the mother a sedative in order to help the daughter or to help the mother? These are complex issues. The code also asks us to practice effectively. And what you'll often find in nursing care is that the situation we find ourselves in makes it difficult for us to do what we know is most effective for people with dementia. And in many cases, you'll find yourself working in a system where, what's effective appears to be impossible. There are simple issues that we'll talk about later. On the design of the environment, for example, where you know that light makes a huge difference. And how can you practice effectively if you're working in a building where it's impossible to make it bright enough in the day or dark enough at night? The third area that's mentioned in the code is the preservation of safety. This is particularly difficult in dementia care. Because sometimes our idea of what will keep the person with dementia safe is so restrictive, that it actually restricts the liberty of that person, their human right to do what they want to do. You sometimes hear of people with dementia who get locked up in buildings for their own safety. But in fact, it's more about the anxiety of the staff about how they would cope. And quite often, it's about the anxiety of the relatives, even if staff would be prepared to take a risk; sometimes, the family are not prepared to take that same risk. And the fourth area is the promotion of professionalism and trust. And we'll talk about that all the way through this presentation.