Alzheimer's and dementia: a glass-half-full approach

Peter Mares: Hello, Peter Mares with you in The National Interest on ABC Radio National. And we've devoted this Easter edition of the program to discussion of dementia, Alzheimer's in particular, one of the most pressing and difficult public health issues that confronts us as a nation. We all age, we all die and many of us lose a few marbles along way. In fact the longer we live, the more likely we are to suffer from some form of dementia, of which Alzheimer's is the most common. It's a frightening prospect, some would say a depressing prospect, yet there is a growing understanding of how to manage the illness in ways that improve quality of life, not only for people living with the disease, but also for those who care for them, by focusing on those marbles we haven't lost. We'll hear in a moment from a United States expert who has pioneered work in this area, and then from some Australian practitioners. There's also a huge research effort to investigate the causes of Alzheimer's and to find ways, if not to cure the disease, then at least to delay its onset, and I'll speak to a leading brain scientist about the progress that's being made. Overall, I hope we'll leave you feeling a bit more optimistic about the prospects for aging with grace and dignity. Alzheimer's disease may be incurable but it is treatable. It's a disease that people may live with for ten or fifteen years, so finding ways to improve quality of life for those living with Alzheimer's and to assist carers in managing the distress of looking after someone with the disease, is vitally important. Dr John Zeisel is the President of Hearthstone Alzheimer Care, which runs residential homes for people with Alzheimer's in Massachusetts and New York. He's also the originator of the arts program, 'Artists for Alzheimer's' in the United States, and he's the author of the book I'm Still Here, which he describes as 'a glass half-full' approach to the disease. Dr John Zeisel, thanks for joining me in The National Interest. John Zeisel:You're very welcome, Peter. Peter Mares: Explain the name of your book, I'm Still Here. John Zeisel:I'm Still Here represents the cry I hear from so many people living with dementia, who are treated as if they're not here. The moment someone gets a diagnosis of dementia, they begin to be treated in most societies, and in most situations, as if they don't exist. A diagnosis of dementia is almost like a sentence that this is the end of their life. But with 10 to 15 years more to go, many, many people living with this illness, are living with this illness, rather than dying with it. Peter Mares: And key principle behind your work is the recognition that not all brain functions and not all skills are damaged by Alzheimer's. It doesn't affect all parts of the brain equally.

John Zeisel:Absolutely. As with most illnesses, it takes different pathways and different things happen first, and then different things happen later. And even if one has very traditional course of this illness, our brains have 100-billion cells, 100-billion is as many stars as we have in our solar system, and we don't even see all of them. So as the disease progresses and one loses some, one might have 90-billion, or 80-billion. That's a tremendous amount of cells, and in those cells are many memory skills, abilities, that don't necessarily get damaged at all in the illness, and if they do, they don't necessarily get damaged until very late in the illness. So people with dementia have many capabilities. Specifically, just to give you two, one of the illnesses that if damaged is a nucleus called the hippocampus, and it's a little organ within the brain that gives us access to memory. So that's damaged. But the memories themselves still exist. So the trick is to provide access to those memories through words that somebody might remember, through pictures and through art. Peter Mares: So through another route, another way of activating those memories and bringing them back out? John Zeisel:Well, in a simplistic way; it's like when I can't remember a name, I use the alphabet. I go through the alphabet and all of a sudden I come to P, and I go, 'Peter, that's the person who's doing the interviewing', and it just takes me a while, but why do we do that? Because the alphabet gives us the trigger and the key to the name 'Peter' that we're looking for, and just in the same way, you have to find a key that helps people with dementia, find their memory. The other part of the brain that is not damaged until very, very late, if at all, is a part of the brain called the amygdale; it's another small organ or nucleus in the brain, and the amygdala deals with emotion. So that people with dementia have a very heightened sensibility of emotion, and can understand and express and feel emotion, and can see emotion in art, even more sensitively than many other people. So that might be a part of the brain that increases in its ability, rather than decreases in its ability. Peter Mares: Well that also raises another important aspect of this whole question, the emotion side, because we need to distinguish between the symptoms of Alzheimer's Disease, like memory loss, the most obvious one, or the loss of executive function, you know, the loss of an ability to carry out a complex task that involves many small steps like following a recipe or something, those things obviously are damaged by Alzheimer's. But the other behaviours we see, things like anger, anxiety, agitation, apathy, they're not the result of Alzheimer's so much as the outgrowth of the frustration the person feels at the symptoms they're experiencing. John Zeisel:Well you've hit it right on the head. I make a distinction between the primary symptoms, secondary and then some symptoms that aren't there at all, that we really cause, rather than are caused by the illness. So the damage to the frontal lobe of the brain makes it difficult to do a complex sequence of events. Brushing your teeth is a sequence of events: finding the bathroom, and finding the glass, finding the toothpaste, finding the toothbrush, all of those things. On the other hand, it doesn't mean a person can't brush their teeth, it just means they might need help lining up the glass and the toothpaste and the toothbrush, maybe even help taking the top of the toothpaste tube off.

All the other steps they can do. So now somebody is faced with going and brushing their teeth and they look at it and they say I know I should be brushing my teeth, I know I'm supposed to do something but I don't know what it is, and they get very upset, and that anxiety turns into aggression towards somebody who wants them to do that. Peter Mares: Or it could turn into apathy, as in I'm not going to try this any more because I can't do it. John Zeisel:Yes, well that's further down the line. In other words, yes, it could turn into apathy but the first reaction is, I want to try it, I want to do this. So the first reaction is anxiety about not being able to do it, which might turn into aggression, but if that continues, that inability, and no-one helps them, then they might turn off and that might turn into apathy. Peter Mares: And John Zeisel, what you suggest is that what we need to do is focus on those bits of the brain that still work well, and the skills people still have and if we do that, then we can maintain the connection with our loved one, we can still get to that person who's still there behind the disease. John Zeisel:There's so much going on in the brain of people with dementia as well as ourselves, that there are tremendous opportunities to connect and to communicate. One example of that would be to use paintings, or use art that have emotional content, and to use those to say 'Well what do you think about them? What do you feel about them? What do you see?' and it's amazing to see the richness of what people tell you when you present them with those keys to memory. Peter Mares: So you found that art is a way, a mechanism through which people can connect who have Alzheimer's Disease? John Zeisel:It can connect in museums, it can connect in the home, it can connect with everyone, and we've started a program, museum programs for people with dementia, organising a trip to the museum, using the artwork on the wall to make them more present, to give them the opportunity to be present, just like we are when we're in front of great art. Alternatively, you can do that in an individual's home or in a care home, which is understanding that art is not just arts and craft, not just something to spend your time doing, but it's an experience, an experiential therapy if you want to call it that, or a therapeutic experience rather, which would be a way to get into the communication abilities and the opportunities of art. Peter Mares: Music also seems to have an amazing ability to connect. John Zeisel:When we talk about art connecting, we mean visual art, we mean music, we mean the circus arts and dance, and singing, so all of these are the arts, and they all have the same impact and they all supply the same opportunities to make a connection and communicate with people with dementia. The biggest problem that we face is the nihilism and the negativism of the stigma of dementia. This stigma which is held by the public, which is held by the professionals, which is also held by some family members and by people themselves, turns them off, and stops people from trying, stops people from trying to communicate, stops people from engaging in the activities they used to engage in.

Peter Mares: You also give some quite simple practical tips. One example that comes from your organisation is that someone with Alzheimer's may forget the names of grandchildren but they can still read, so if you put a name tag on your grandchild, then they'll know who it is and you'll avoid the anxiety that might result from the forgetting of the name. John Zeisel:People with Alzheimer's, with dementia, often have a skill such as reading, that enables them to get to the memory of the name. I forget people's names quite often, not because I necessarily have a cognitive problem, but because I see many people and meet many people as you do, Peter, you interview people, I'm sure my name was written down in front of you when you started this program, because you want to remember it, and you want to pronounce it correctly, so putting a name tag on someone, as we do in a conference, is a way of jogging our memory to that name. Similarly I recommend that if people are having a party, a family party, everybody wears a name tag, so that everybody remembers each other's names and the person with dementia doesn't feel out of place as if the name tag was there for them. So using a skill such as reading, and almost everybody with dementia still can read if the letters are large enough. Peter Mares: A related example is that you suggest you should never say to someone, 'Do you know who I am?' John Zeisel:Well that's even more profound, the issue of testing. Everybody wants to know that their mother, their uncle, their spouse, is still the person they think they were, and the way a person finds that out, the way a person keeps saying you're still the person you were before, right, is by testing. They say, 'You can remember my name, this is your grandson you know his name, don't you?' and often a person with dementia in a situation like that will look at the person who's asking the question and say, 'Well yes', and then the person will say, 'It's Billy.' And, 'Oh yes, I know that', but the truth is they didn't have access to that name in their brain. If however, when you meet somebody with dementia, even if it's a close relative, you say, 'Hi, I'm John, I'm your son and I saw you last week, and it's a pleasure to be here', especially if you hold their hand and give them a touch of skin, they will say, 'Oh John, it's nice to see you again.' Whether they actually remembered the name by themselves, or whether you gave them the key to the memory, they still remembered the name. And this is something every individual can do, so the first one was wear a name tag in situations where a name might not be remembered, which might mean every day. And even though it seems silly to wear a name tag around the house, why not? The second is as you put it, is never test, never say to somebody, 'You remember my name', or you even never say, 'Well you know what day it is today, don't you? Yesterday was Monday', but rather tell them, say, 'This is Tuesday and we're going out today.' And the third is helping people overcome what we call executive function problems, which is if there is a sequence of things that need to be done, such as getting dressed, to lay the clothes out, with the underwear on one side and then the outer wear on the other and then the coat down on the other side of the bed, so that the person doesn't have to figure out the sequence. Then they can get dressed by themselves. If you just say, 'Go to the closet and open it and get your clothes, and open the drawers in the dresser', they might get frustrated, they might get anxious, they might get even aggressive, and the problem is that when we don't do that and we don't help them get through those elements, two things can happen. One is we say, 'Oh my God he's in an aggressive phase, we have to give him some kind of pill to stop that

behaviour', or they stop that behaviour themselves by becoming apathetic and saying, 'I can't do this, I'm just not going to do this, I'm going to stop'. Peter Mares: I'm wondering about the cost implications of your approach to Alzheimer's, because we struggle here in Australia with the issue of funding for age care as it is. Are there cost implications of your approach? Is it more resource-intensive? John Zeisel:The world is struggling with age care costs. The world is struggling with the cost of dementia, and the approach that I recommend in I'm Still Here, and the approach that we employ at Hearthstone, but also a Hearthstone affiliates of which we have one in Australia is well, is less costly, not more costly, than keeping them at home, frustrated, angry, agitated and perhaps apathetic. You have less problem behaviours, and those are the problem behaviours that cost money. Taking care of somebody who is agitated and aggressive towards others might even be dangerous, is costly. Taking care of somebody who is talking about Australian art in a museum in downtown Melbourne is less costly. Peter Mares: Dr John Zeisel, thank you very much for your time. John Zeisel:Peter, you're very welcome. Peter Mares: Dr John Zeisel, the President of Hearthstone Alzheimer's Care and the founder of the Artists for Alzheimer's program in the United States. His book, I'm Still Here is about to be published in Australia by Hatchette Livre. You'll find more details on our website.