By Annie Hastwell

Professor Julian Hughes says dementia patient care needs to be person-centred. Image: annstheclaf

By 2050, the number of Australians suffering from dementia will have reach close to one million compared to the half a million today.

It’s something families and society will increasingly have to deal with as the biggest ever generation ages.

Annie Hastwell spoke to British psychiatrist Professor Julian Hughes about some of the ethical issues surrounding how we treat dementia patients. He says once a person is labelled with dementia our society ceases to regard them as individual human beings.

JULIAN HUGHES: The underlying basic ethical issue I think is to do with the standing of the person as a person. Especially in institutions, and I know that people are very aware of this in Australia as in other parts of the world.

The underlying philosophy is to be person-centred. But what we have to think about is what that really means, what actually is it to be person-centred? What it really means is that we should look at each individual individually, and work quite hard at understanding their particular needs.

ANNIE HASTWELL: Difficult though isn’t it when you’ve got a system where you might have a fairly low paid person, possibly not as well trained as is desirable, working with a lot of patients who can be quite difficult?

JULIAN HUGHES: I think that’s absolutely right, that is the challenge. It’s mostly by making the people recognise that the person with dementia is just like any other person, and none of us wants to be treated in a way that’s demeaning or is in some way belittling and also we want to have some sort of control over our lives and over our decision making.

ANNIE HASTWELL: So how do you get that to happen in a health system that is under-funded, particularly in that area?

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JULIAN HUGHES: Well it would be tempting to say that the funding should be improved and I’m sure that’s right, some of these services for people with dementia have been seen as Cinderella services that don’t get much funding, but I think that there is also another issue which isn’t to do just with funding. It’s simply to do with people’s attitudes and I come back to this idea of seeing the person as a unique self just like you and me.

It is possible with the right sort of training to get people to respond to the people they’re looking after in a slightly different way. The moment you do a bit of role-play for instance or encourage people to keep reflective diaries of what’s going on, then it becomes more obvious to staff what they are doing.

ANNIE HASTWELL: Are there any other little tricks or things that could be done, say, at the point when a person is admitted into an institution so that their individuality is recognised right from the start?

JULIAN HUGHES: I think that’s a very sensible suggestion, its often the case that when somebody goes into a home actually nobody really knows their full story and I’ve heard people relate how when researchers have gone into a home and have then started to engage with residents in some sort of meaningful activity, the researchers then start to hear all sorts of things about the person and they go back and report this to the staff and the staff then have to admit that they never knew that about the person.

ANNIE HASTWELL: So it’s just that no-one asked?

JULIAN HUGHES: No-one asked and they’ve never had long enough conversations with the person to discover.

ANNIE HASTWELL: Now one of the big ethical issues also in institutions is the drugs that are used because I believe, dementia patients can be quite difficult can try to escape and anti-psychotic drugs are distributed quite freely in some places. Is that one of the issues that you tangle with?

JULIAN HUGHES: It is a major issue in the UK as it is here. The use of anti-psychotics is interesting because on the one hand, we know that these are quite dangerous drugs and we know that mortality and morbidity in terms of side effects are quite common with these drugs, and yet on the other hand, some of the best evidence for effectiveness comes from these drugs. We know that they cause the most side-effects and can be terribly serious in their side-effects but we also know that these are the things that can often work the quickest and best.

This is not me saying that I think we should be using these drugs, this is me saying that I think this is why the drugs get used because if you are faced by someone who for instance is becoming agitated and maybe aggressive, it’s very difficult to start thinking to yourself what are the person’s individual needs that are driving this behaviour. It’s much easier just to think well let’s just give them this tablet because we know that in twenty minutes they’ll be much quieter. But that isn’t the right thing to do of course and it comes back to what you were saying before that the better thing would have been to have known the person in a deeper sense before this behaviour started, so that you might have been able to anticipate it and stop it.

ANNIE HASTWELL: So how do you see this whole area looking in twenty years time? We’re obviously learning a lot as we go along as the dementia increases as life span gets longer, but what changes will there be? What will institutions look like? What will training be like?

JULIAN HUGHES: We’ll either be living in an absolutely terrible world where huge numbers of people have to be looked after in large institutions with very little real human contact and we’ll be living in this world just because of the numbers if we haven’t done the right things, or we could be living in a much better society where people recognise the importance of individual choice more, where they recognise the personhood of people with dementia and where they also recognise the importance of us all pulling together in order to make things better.

So perhaps as a sort of concrete example of this one could think of the various assisted technologies that might help people. These can be anything from just devices which tell you if someone is wandering, so tagging or tracking devices, to whole homes which are set up in order to help people live independently. Now the thing is that if you think of all the possibilities with modern technologies this might lead to a wonderful world in which people can live independently, they can be kept safe, and all their needs can be met using this sort of technology. But equally, it might lead to a terrible world in which people live in a very isolated way with very little human contact and actually they’re just kept in a sort of horrible technological world in which things like the general quality of life which for most of us comes from things like music, and meeting people and socialisation, where all of those things are just completely absent.

Annie Hastwell is a producer on the Wire.

Read more about dementia and why it is now the third highest cause of death in Australia…click here.