Among his many roles, Graeme Samuel is a Professorial Fellow at Monash University’s Business School, and School of Public Health and Preventative Medicine. I worked at the Australian Competition and Consumer Commission (ACCC) when Graeme was Chair. Since 2014 he has held the position of Chair of Dementia Australia, the national peak body for people impacted by dementia. As an advocate of good design, in addition to safety, I was keen to hear about how products and environments can be designed to meet the needs of people living with dementia. Before getting to that, Graeme explains a lot about different types of dementia and their effects.
Gail Greatorex: Thank you very much Graeme for talking with me today. You were Chair of the ACCC when I was working there in product safety. And I think we both left around about the same time. And, not long after that you became Chair of Dementia Australia. Most of us are aware of dementia and how it affects people, but could you tell us a little bit more, what’s it like to have dementia?
Many different kinds of dementia
Graeme Samuel: First we’ve got to remember, dementia is not just Alzheimers disease. People tend to confuse it. Alzheimer’s disease causes about 70% of all dementias, but there’s a hundred different causes of dementia. The most common of which are Alzheimer’s disease, which tends to affect your memory and your capacity to undertake everyday tasks. And will gradually deteriorate where you won’t even recognise your loved ones, you’ll lose basically the capacity to speak, even to eat, you have to remember to swallow.
Then there’s another form of dementia, which is vascular dementia that’s caused by mini strokes. Now mini strokes will affect parts of the brain and also particularly your facial nerves, so that you’ll start to see the signs over a period of time. My dear mother had that, but unfortunately at the time she was never diagnosed with vascular dementia. So she was diagnosed with Alzheimer’s disease, which she never had. The treatment she had was the wrong treatment and of course you get into those sorts of problems.
There’s what’s called a fronto-temporal dementia, which is dementia of the front sections of the brain, the frontal lobe. What happens there, the signs of that are that you tend to drop or forget the normal social inhibitions. You’ll say things, that are just, socially unacceptable or socially strange.
Gail: The sort of thing we often like to say ourselves, but we hold back.
Graeme: Yes, that’s right, so you lose your inhibitions and that will gradually get worse, and then there’s a dementia called Lewy Body [Disease].
So my dear mother-in-law 101-and-a-half years old. She has Lewy Body and that evidences itself with substantial paranoia. She will often, if you walk in to say hello to her, she will cover the phone with a pillow because ‘They’re listening’ and ‘I won’t be here tomorrow cause they’re going to kill me’. And it’s a shocking impact of a night-time, you will imagine that there are monsters that are coming down to attack you. And so all these things can happen.
But if we deal with Alzheimer’s disease, because that’s the one that we can focus on the most, Alzheimer’s disease is caused by an amyloid plaque. It’s a rust that grips around the nerve ends of the brain, and then it starts to deteriorate them and prevent them functioning,
Gail: Corrode them.
Graeme: Corrode them, yeah. Now, with rust on steel, once it’s pitted the steel, you can’t fix it. There’s nothing you can do. And the same thing with amyloid. Once it’s done its damage in the brain, you can’t fix it, but we can if we can find out about it early enough, then what we can do is to potentially take measures to slow down the progression of the amyloid.
And there’s even a drug in the United States that had some early approval from the Federal Drug Administration there. It’s now awaiting approval in Australia through the Therapeutic Goods Administration (TGA). We hope to get that early next year. And if it does, it offers that light at the top of the hill, the potential hope that we can slow down Alzheimer’s disease. And if we can do that, perhaps give people that have got this shocking disease a bit more quality of life for a long time.
Gail: Absolutely, it’s critical. In fact, when I arrived today at your lovely seaside home, you were trying to fix up the rust on your front gate.
Graeme: Something that was described as a rust converter that converts it to black paint. I have no idea whether it works or not, but that’s our old ACCC days [potential misleading advertising].
Challenges in daily living
Gail: Speaking of products, for certain types of dementia sufferers … No, I used that word [sufferers]. I’ll start again.
Graeme: People living with dementia.
Gail: For certain people living with dementia, things like spatial cognisance and orientation can be a problem. And that’s where they can be helped by having certain products. So would you tell us a little bit about the spatial issues and the disorientation that some people with dementia go through?
Graeme: And can I make a point about this issue of people with dementia? Because the last thing people with dementia want is sympathy – they’re not suffering. They want understanding, they want empathy. And if they’ve got understanding and empathy, it helps them deal with the disease a lot better. Knowing they’ve got people who are with them, caring for them, that understand what they’re going through.
Now, the primary issue though, is how do we make it easier for people, hopefully to live at home a lot longer and to live in society a lot more, or alternatively, if they have to, then go into an aged care home.
Living space design
If you have patterned carpet, they will either think there are snakes on the ground.
There’s so many things that we’ve learned – Dementia Australia produced an award-winning virtual dementia experience, which is now in a mobile form. You wear virtual glasses and you can actually see what’s going on.
And there’s various things that we know – a person living with dementia, if you have patterned carpet, they will either think there are snakes on the ground, or there are crawling bugs. If you’ve got striped wallpaper, the walls look like they’re caving in on you as you walk down a passageway.
We do know that for example, people with dementia, if they go into a bathroom, which is very often traditional white – all white basins, baths, laundry basket, toilet – they can’t draw the distinction and so they’ll mistake the laundry basket for a toilet. And so what we advocate is having different coloured toilet seats, just a navy blue toilet seat will actually distinguish the toilet from the laundry basket or whatever.
If you put a mat on the ground in front of the shower or in front of a door, then it will often look like a hole in the ground. And that causes its own problems. For those that saw the film Still Alice with Julianne Moore, she couldn’t get the letters that were being posted through the front door letter box. They were lying on what appeared to be a hole in the ground.
We do know that for example, if you’ve got lighting in the ceiling, and this often applies in aged care homes, if you’ve got the bright, LED lights, the little ceiling lights, they would tend to cast shadows. They look like snakes, whereas if you’ve got grid lighting, which is almost like fluorescent lighting running down that won’t cast the shadows, that makes it a lot easier.
And you know what happens? Someone with dementia, walking down a corridor see snakes on the ground and panics, and then the nurse walking with them says, don’t worry. And they start to get aggressive … ‘No there’s snakes on the ground’. And so they say, ‘This person is aggressive. We’ll give them anti-psychotic drugs.’ And the cycle starts – all because the lighting is wrong. And they’re those sorts of things.
Now, there are so many other things you can do, for example, plates on the table for dinner. If they’re different colours, it helps a person with dementia to distinguish between a bread plate, a dessert plate, a main course plate …
Gail: Or even the tablecloth cloth …
Graeme: Even the tablecloth cloth itself. If it’s patterned, it’ll look like it’s got bugs crawling all over it. If the plate has got an edge around it, which it can do, it might be a white plate with a gold edge or with whatever, that edge shows the person with dementia what is the edge of the plate and avoid spills. So there’s those sorts of issues that you can deal with.
If it’s a poorly designed or poorly thought through set up, then people with dementia are going to get upset and frustrated just through eating a meal.
Gail: Just thinking about every day eating where everybody has to eat, and you want that eating experience to be as comfortable as possible. And if it’s a poorly designed or poorly thought through set up, then people with dementia are going to get upset and frustrated just through eating a meal.
Graeme: And it’s the upset and frustration that causes the problem because it goes into a vicious circle. They’re upset and frustrated – n ot for their own failing, but because of the failing of the provider, whether it’s the person at home or whether it’s in an aged care home, the failing of the provider to understand what the issue is. And so therefore they get upset, they get frustrated. They get angry. And then you say, well we’d better calm him or her down, we’ll give them drugs.
And then they go into a stupor. And that’s the hard part of it. And that is one of the things that we raised in the Aged Care Royal Commission.
So there are those sorts of issues. Labels on doors are very important. If people see the same door without labels and they’re going to the bathroom, they open it up it’s a cupboard. Or they try another door, it’s a bedroom – they have got no idea what to do. So labels on the doors can help.
Labels in the wardrobe: socks and singlets, underpants, whatever it is. There are special cupboards that are now made whereby the clothes that are going to be worn today or tomorrow will be put at the front and then behind another door, is the vast storage of clothes, because a person with dementia doesn’t want an array of 30 shirts to choose from. They don’t know. So if they’ve only got two, they know they take the front one and put it on. The others are all hanging very nicely, but behind a second cupboard door. And that’s another element of it.
Gail: And you mentioned in your [National] Press Club address about labels for when you’re out in public, the men’s and women’s toilets. Sometimes you go to some interesting venues where they’ve got a bit creative in depicting whether it’s for men or women, and sometimes, most of us get confused but of course you want a simple sign for anyone with less cognitive ability.
Graeme: Let me throw the challenge. So when you go to the normal toilets, whatever they might be, and look, I know I haven’t got dementia, I’ve been absolutely certified, I don’t have dementia, but I can go to these places and it’ll have a sign that sort of says, it’ll have a man, and sometimes it’s often difficult to distinguish between the man or the woman in the figurine, but then it will have ‘RH ambulant’. I don’t know what it is. I’ve got no idea what it means. I have no idea whether I should go in there or not.
Now imagine then, a toilet that’s got the international symbols on it. I’ll challenge most of your listeners to actually tell me what the international symbol for male is and the international symbol for female, that’s the symbol with the round circle and the arrow and the like. Extremely difficult. There’s one hotel in Melbourne that has got the most confusing figurines I’ve ever seen. You know what I was used to do when I was younger? When it first opened, I’d wait to see who came out to see if I was going in the wrong place. And they’ve actually gone and put male and female underneath there because they must have had some complaints.
But if we’re having a meeting of people living with dementia and they’re mild stage, we will go to the toilets and we will actually put printed signs up: male and female to cover the figurines because figurines are too confusing. And it’s a really simple thing. Tell people what it is. Don’t just assume that they know.
Gail: I think that’s so important. So have you actually witnessed people struggling with eating for example?
Graeme: Oh yes. My dear mother, now let me tell you what happened with her before you even got to eating. So every morning she would get up and she was living at home on her own, and we knew that she had some cognitive impairments. We knew what was going on. She never knew, and we never told her, but she would ring the caretaker every morning: her toaster wasn’t working. So he came up and he’d press it down for her. She’d ring him five minutes later and say the kettle wasn’t working. And he came up and he would press it to do it. I must say it was costing $20 each time.
And then you imagine that here she was, somebody who used to cook for her family every Friday a family of 10 or 15, and she cooked beautiful meals of chicken and rice and everything else. And then suddenly she doesn’t know how to do it anymore. She’s forgotten that. So it is really hard adjustment. And then you can imagine the frustration of that.
Listening and communicating
Then the noise factor. So we used to go on Friday night – her grandchildren would come, and of course they’d be running around making noise and she would sit there and start to cry. And we said, ‘What’s wrong?’ ‘I can’t take the noise anymore’, she said, ‘it’s too much now’.
A loud air conditioning blower will sound like a roar, a train roar to someone living with dementia. And music can sound really loud. On the other hand, music that they know and have loved all their life can be a wonderful therapy for people with dementia.
You can imagine someone with dementia saying ‘Can’t I just switch this on? And listen to what I want to listen to’.
We know that, which leads you then to what you do, for example, with audio equipment. I know how to work it in my home. I’m not sure that there’s many others that would know how to work it, because it can be quite complicated and it gets more sophisticated every day, with the connections and altering the equalizers and altering the volume and the balance and all that sort of stuff. You can imagine someone with dementia saying ‘Can’t I just switch this on? And listen to what I want to listen to?’ And so audio equipment now has been designed for aged persons and people in their dementia that will identify very clearly in large letters what the station is and you just press a button.
Telephones. My dear mother-in-law has a telephone that my wife organized for her, which has got very large buttons and on it, my wife’s written the names of her children, her mother’s children. And she knows that if she presses that button, she will automatically go through to Dave or to Jill or to whoever it might be. So it’s all there …
Gail: Yes, minimal choices and very easy to recognise.
Graeme: She can ring her daughter Jill, because she knows to press that button. There are dementia clocks, or they call them dementia clocks, but they’re really for people who’ve got failing eyesight and she does, so that it’s very large numbers. It’s no use having an analogue clock and no way they can tell what [the time is]. So the very large digital numbers, and then it’ll be pre-programmed(not so much for a younger person) with what they might have to do during the day. So it might be pre-programmed with ‘get dressed for your appointment with Dr. Smith’. And that won’t be just a calendar or a complicated calendar. It’ll have in large letters. So 45 minutes beforehand, get dressed to be ready for your appointment with Dr. Smith, and the taxis coming. So it gives all the instructions as to what to do.
Out and about
And then you mentioned taxis and some, good heavens, and some bad taxis are not fit for anyone to ride in, but there are some wonderful taxi drivers and Uber drivers who are trained in what to do, how to help someone with dementia and that’s why it’s always very helpful to have a standard driver, that if you book it in time, book in an hour or two hours ahead, and so Jack will come along, pick up, know Mrs. Smith: ‘Come on. Dorothy, come on, darling, we’ll take you down to the car. Now, today we’re going to Dr. Smith, right. We’ll take you there, we’ll wait outside for you, and I’ll be here when you’re finished. All you gotta do is come outside. The nurse will bring you out and then we’ll take your home’ and, Jack will then take her up to her room. Those sort of people are becoming more, the kind people …
I’m only saying: empathy, tenderness, love, care. That’s all it is.
Gail: It’s unfortunate that the female-only Uber style company [Shebah] has collapsed during COVID.
Graeme: It is, but look, I use Uber a lot and I gotta tell you that with very few exceptions, the drivers are so considerate. They are so well-intentioned, they’ll have a wonderful conversation with you in the car. And part of that, part of the secret of Uber is you and I are familiar with this, competition, right? Because they know, the competition is bred most out of consumers being aware of the quality of what they’re getting. What is the price? So you book an Uber car (I’m not here to advertise Uber) but when you’ve finished you’re asked to rate your driver, and when you rate your driver, I always rate them five, except in a couple of bad cases. You know. Because they’re great drivers and they’re considerate. They know what to do, take that extra bit of care.
Gail: My friend who’s got dementia came out with me to a live show a little while ago, but about 15 minutes into the show she decided she didn’t want to be there anymore. And I thought, I’m here with other friends as well. I didn’t want to leave the show. And I thought, oh, okay, I can book an Uber and it’ll be paid for – my friend just has to get in it. Fortunately we were only five minutes from her house, which was good because I worried afterwards. I thought, ‘Oh, she’s going to think who is this man? Whose car am I in? Where are we going?’ And I didn’t know whether that Uber driver was really cognisant of it. I think I said something to him when she got in.
Graeme: So you dealt with that, if I might say so, impeccably, because what you did was you booked the Uber driver, you probably said to him, ‘Jack, this is my dear friend, she does have some dementia. Would you mind just taking care of her and when you get there, would you mind just taking, escorting him to the door?’ Jack would say, he’s an Uber driver, ‘Of course, I’ll do it for you’.
The other thing that I note and is really important, your friend has dementia, but you still took her to the show. Yes, my mother, unfortunately, never had that and she had some very dear friends who, when she developed dementia, they started to desert her. And that lifetime of friendship wasn’t enough to hold them around. And you’ve shown the care for your friend, that is so important because failing that, your friend would have to go into an aged care home. And the decline in condition would be exacerbated so quickly. So what you’re doing, through the goodness of your heart and your friendship, is you’re ensuring that your friend can remain the community that much longer.
Gail: It’s an important point, Graeme. Thank you for that. I certainly value the friendship and it is disappointing when [other] friendships fall away.
Product design for dementia in Australia
Gail: Graeme, are you aware of any dementia related product design initiatives in Australia?
Graeme: Yes. There are, some of it’s imported, but there is also a lot of work being done. Dementia Australia actually operates in partnership with aged care homes and you can see aged care homes where we work with the architects to show them what’s required. So for example, you will go into the dementia-friendly section of an aged care home. It’s not locked up, it shouldn’t be. Yes, you’ve got to stop people wandering. They can wander out into a garden right outside, which is a wonderful environment.
The toilets have got the different toilet seat colours I mentioned before, but it will have Toilet written on the door, or it might have Female Toilet, Male Toilet as the case may be, all those sorts of things. The rooms are designed in a way that people will be able to understand, know what the bed is, where the bathroom is, et cetera.
We’re not knocking down walls. What we’re doing is putting labels, different coloured doors … we’re making life easier for people to be able to live at home.
And if you can do the same thing in a private home, and it takes a bit of time and maybe a little bit of money to get rid of the patterned carpet. And to get rid of the striped walls and to put different toilet seat covers on and to take the rugs away that looked like holes in the floor and to bring in crockery that has got edges on it and things of that nature. We’re not knocking down walls. What we’re doing is putting labels, different coloured doors. We’re making life easier for people to be able to live at home and say, yes, I know that if I go to the red door, that’s my bathroom, or go to the blue door, that’s my bedroom, go to the green door, that’s my kitchen. And it’s those sorts of things.
And then ultimately, the next thing that will occur and we just started to work on at the moment is using telehealth or video connections. So for example, with the NBN, you can have security cameras in your house, which you can activate your mobile phone, wherever you are on the world, your mobile phone will be able to show you if someone is intruding in your home or garden. Now there’s no reason why the same thing can’t be done with the consent of the person in dementia, right at their home.
So that in the various rooms it might be the bedroom or the kitchen or the living room, whatever it is. There are these cameras, connected to either a dear friend or to a daughter or son. And every so often, they can just log on to see if there’s a problem or alternatively, if there’s no movement at all, then you know, maybe there’s been a fall or whatever it is.
So there are those things that are currently available and they’re being developed. There’s a website, the Leef website which has got a whole section of dementia products from animated animals … I might say forget animated animal toys, the most wonderful thing that a person with dementia can have is a dog or a cat, a pet, to sleep on the bed with them at night time. There’s a wonderful article I read over the weekend about what it means to the animal, the dog. And to the human being to have the dogs sleep on the bed. And our dog eats and sleeps on our bed with us. Oh, wonderful. Then you just look at them, just say they are so contented.
But Jill takes our dog Monty out to see her 101-year-old mother every time she goes out there. And each time she does, her mother’s face lights up. And she’s got a little package of Shmackos, whatever you call them. And she says, come on Monty. And she gives him Shmackos, which he delicately takes from her hand. That gives her an hour of joy every day.
So those are the sort of things that can be so important for people with dementia and notice, I’m only saying … I’ll repeat these words: empathy, tenderness, love, care. That’s all it is.
And these products are there to help with those sorts of things, we’re going to need it more and more. There’s 472,000 people we know have been diagnosed with dementia. Heaven knows how many others there are that have never been diagnosed. Their doctors told them they’ve got depression or suffering from grief. They might’ve had a tumour. But it [dementia] is growing so fast as our population is getting older.
Gail: We keep improving on the physical health side of things …
Graeme: But for mental health we’re not, and then you’ve got younger onset dementia, even children. We now have a linkage with a group that is dealing with childhood dementia. And when you look at that, people from 21 years onward, there’s about 30,000 that have got younger onset dementia, that is, below the age of 65. And they know that unless there’s something there, then it gradually declines, the quality of life will decline and they’ll ultimately die.
Empathy and understanding
Gail: So you mentioned things like care and empathy, but understanding is equally important, really to take the trouble, to try to learn what experience people with dementia have and then work around it. You’ve described several scenarios in which people with dementia would experience the world quite differently from the rest of us. But it’s important to get to know that, speak to carers, speak to the people who look after people, and I think that there’s a message there for industrial designers to factor all of that in.
Graeme: I take empathy as understanding, it’s not sympathy, but there’s a bigger part of understanding, which you’ve actually drawn out in the question. See, understanding means if you’re a bank and someone with dementia comes in and wants to withdraw some money or put money in or open an account, YOU DON’T HAVE TO SPEAK LOUDLY TO THEM. Their hearing hasn’t been impacted, you just speak very carefully and explain. And if you’ve got to explain two or three times, that is empathy, that’s understanding what it’s about.
The biggest thing is to keep people with dementia out in the community as long as possible.
Someone with dementia, particularly in the early stages can continue to run a business, can continue to be involved in a business. but you take all those things into account. So you obviously, with someone with dementia, you don’t allow to be involved with hazardous machinery, for example, but there are other things that can be done.
One of the most difficult things for a person with dementia is to lose their driver’s license. It’s amazing how much you depend on your license … when we took Mum’s license away, police insistence. she was shockingly upset. She said ‘But I can’t go and see my grandchildren anymore’. We said ‘Yes you can Mum, taxis are 50% cost, that’s the arrangement. Come and see me anytime.’ But it wasn’t the same. She had to ring a taxi to come and get her, instead of just getting in the car, just driving right to see them. So those are the sort of things that if we’ve got that understanding …
The biggest thing is to keep people with dementia out in the community as long as possible. And I was with a colleague the other day; we were up with Maree McCabe, at the investiture of her AM [Member of the Order of Australia], and sitting next to us was a lovely old man and his son and his wife, the man’s wife has dementia, but he was taking care of her at home. And he said, she recognied him still, but just. But I said, ‘Look, it’s the most wonderful thing that you can actually afford to have your wife at home.’ He said ‘I would never have her anywhere else.’
And importantly, for him, his son lives next door and they’ve built a granny flat out the back for a live-in nurse, because you’ve got to have some respite. You’ve got to have that ability to actually just to have a break. Because it can be very demanding and they’re the sort of things that Dementia Australia is endeavouring to work on with the government; government’s putting a lot of money into it now, in the last budget, just to recognise there are ways of dealing with people living with dementia, which doesn’t mean, as unfortunately we had to do with my mother, putting her into an aged care home where the dementia ward was behind a locked door.
Gail: So what about a business model for services and products? It’s a growing market, of course. Do you see there’s an opportunity there?
Graeme: Yes, there is. The business model of services we’re working with in partnership with various enterprises, including a couple of the banks, Bank of Melbourne, Westpac, to develop this, ‘cause it’s very important – with lawyers, legal firms, all of them are trying to work to assist in the provision of services. Getting doctors to understand what it is …
You might raise your eyebrows when I say that many doctors have no idea what dementia is or how to deal with it. I had the most wonderful GP who, and I’ve sent a number of people who’ve asked me for help on this area. And he’s so caring and so understanding and he knows what to do. And he knows the right geriatricians to send them to, people who are not going to say ‘Oh, you’ve got dementia.’ But rather are going to have enough understanding to say, ‘I think what we ought to do, Mr. Smith is put you through some scans. Just want to see what’s going on. It may be that what you’ve got is a reversible condition. Let’s just have a look and see if we can work our way …’ A bit of caring, a bit of understanding. Those sorts of things are all part of the process.
There are organisations such as the Leef organisation, which is saying, we know what’s needed, and we’re going to either import [products] or have them manufactured because it’s a growing market.
And then in products, look, there are so many things. Dementia Australia is developing more and more – our website is developing more and more the concepts that you’ve got to deal with so that we now understand what’s required. And then there are organisations such as the Leef organisation, which is saying, we know what’s needed, and what we’re going to do is either manufacture or import them or have them manufactured because it’s a growing market. We estimate that within the next 25 years, we’ll probably have upwards of a million people in this country living with dementia.
Gail: So we’ve recently got the NDIS, the National Disability Insurance Scheme. Is that having an impact in this area at all?
Graeme: I wish I could say yes, but there’s a limit. First of all, they won’t deal with anyone under the age of 65. So that cuts out the thousands, tens of thousands who have got early onset dementia, but they are not dealt with. The NDIS itself, we’ve found at Dementia Australia, the institutionalised nature of it, means that it doesn’t provide that sort of empathetic care and advice that you really need for people with dementia. I have to say Dementia Australia’s withdrawn from NDIS recently and the government knows this, and it knows why. We just think that there’s more… What do I call it? There’s more discreet, caring and understanding that’s required than what the NDIS can provide.
Gail: It’s such a huge scheme. Having worked in government when they were setting up the NDIS, and I thought, oh, I’d rather someone else attend to that than me. And it would be very challenging because it covers so many different types of disability. And I can see why this kind of dementia and related illnesses do not fit neatly within a bureaucratic model.
Graeme: We’ve got to remember also, it’s something you pointed out before that is that dementia is a disease and a disability of the mind. It’s invisible except in the symptoms, the signs, whereas many of the disabilities the NDIS is dealing with are disabilities of the body that are visual, able to be seen. That makes it a lot more challenging and, 500-600 staff and volunteers that are Dementia Australia, they’ve been brought up in a culture which emanates from the CEO and the executive team, et cetera, which is, we care for these people.
This is what it’s about. And we’re there to help them, help those that are caring for them. Help them to get some respite. and it’s a really, it’s a complex task. But it’s part of the culture. You can’t do it. I wish you could, but I don’t think you can do it in a profit-making environment. Now, the aged care providers won’t like me saying that, but the profit motive has to always impact on the motivations of empathy, tenderness, love, and care. They’re the fundamental factors. And when you start building profit in as the overlay, a return on shareholders’ funds then if the choice is between empathy, tenderness, love, and care or increased return on shareholders’ funds, to my mind, it creates an inherent conflict and I’m never very comfortable, as to the way that conflict is resolved.
Gail: Hopefully there’s some further things to come out of the Aged Care Royal Commission that might help.
Graeme: I hope so. The Aged Care Royal Commission, I have to be very honest with you and say that I was pretty angry when that was launched, because we knew that we’d had so many inquiries. We knew the issues. And, it seemed to me that all this was going to be was another process of exposing what we already knew.
Graeme: You already knew Oakden, and what had happened in South Australia. You knew what was going on in aged care, as in the inquest into St. Basil’s at the present time. But we’ve had the Aged Care Royal Commission. It’s got its recommendations. Government says it’s going to adopt them. I hope it does. I hope whoever is in government next May agrees to adopt them. But the pace with which this occurs just troubles me, because we’re dealing with old persons. They’re not going to live long enough to see the benefits. If we go at the pace … keeping in mind that some of these early inquiries go back to the early part of the last decade, even in the early part of this century and people who were the subject to those inquiries have long since passed on.
A brighter future
Gail: Indeed. And if we’ve got a positive note to finish on then?
Graeme: Yes and the positive note is this: that for so long, we have said dementia is a terminal disease and there is nothing you can do about it. That’s changing. As we’re getting more scientific researchers, groups like Dementia Australia are learning more about how we train people with those fundamental features of empathy, tenderness, love and care.
The positive note is this: that for so long, we have said dementia is a terminal disease and there is nothing you can do about it. That’s changing.
The sorts of things are reflected upon in the National Press Club speech, the Dementia Roadmap, which was adopted by this Government in a very tough budget, but they allocated over $200 million towards dealing with dementia. There’s a $185 million MRFF [Medical Research Future Fund] mission, which relates to aged care and dementia.
So government is focusing on it now and so is the opposition. So, it doesn’t matter which political party we’re talking about. So, we’ve got all that happening. And then at long last it is just possible. I have to put it in those terms, just possible, that we’ve got drugs starting to emerge that might help stave off the inevitability of Alzheimer’s disease, which is the major cause of dementia. 70% of dementia is Alzheimer’s disease. If that drug that has been given some tentative approval in the United States, if it works, then it is the beacon. It’s the light at the end of the tunnel. And hopefully others will follow suit. And then we just might have something, where someone who’s diagnosed with dementia, in particular Alzheimer’s disease, can say there is a means of dealing with it.
And look, 20 odd years ago, the C word, cancer, you didn’t speak of it. And yet, so many cancers today are able to be dealt with. I’m hoping that over the next 20 years, we can actually turn around and say the D word – no longer has the stigma, right? No longer means you have to go into an aged care home, but you can stay at home. And that will mean a sort of complete reform of the aged care home packages, and I’m hoping that happens. And there are signs it’s going to, there is a recognition by government. I’m hoping that as people get a greater understanding of dementia, as they are, and Dementia Australia working on the understanding issue so much through its dementia roadmap, that people will start to say: it’s not the end, but there is hope.
Gail: That’s good. It’s what we want. Thank you very much, Graeme. It’s such an important topic and I really appreciate you sharing your insights with us today.
Graeme: Thanks very much for the opportunity Gail. Good to see you again.
I was so pleased to capture Graeme’s insights on dementia and how we all need to gain understanding. I’ve written a blog article about products to accompany this podcast and transcript. See Well-designed products can help people living with dementia. I hope everyone gets something out of all this information. Gail
Video of Graeme’s 2021 address to the National Press Club is available on YouTube.
And if all this has rung alarm bells and you don’t have dementia yourself, I found a wonderful TED talk by Lisa Genova on how to avoid getting Alzheimers. The TED talk gives a graphic explanation of how the disease affects the brain.