"I find with dementia, anything you can enjoy helps you with the condition." – Ray Morgan
Airdate: 
Tuesday, April 28, 2015 - 20:30
Channel: 
SBS

The number of Australians living with dementia is set to soar in the coming years.

As the group gets larger many people with dementia are finding their own way through memory loss, determined to let their own personalities shine through.

They are fighting what is now Australia’s second biggest killer, ahead of stroke and cerebrovascular diseases, recent ABS data shows.

How can humour help balance out the despair living with this irreversible and debilitating brain disorder?

This week, Insight hears stories of sacrifice and success of people living with dementia and their loved one’s experience with this condition.

What's the best way to live with dementia?

Credits

Join the discussion by using the #insightsbs hashtag on Twitter, or posting on our Facebook page.


Helplines and Useful Links 

My Aged Care (website by the Australian Government)

1800 200 422 between 8.00am and 8.00pm on weekdays and between 10.00am and 2.00pm on Saturdays. For emergency respite support call 1800 059 059

Alzheimer's Australia 

National Dementia Helpline: 1800 100 500

Report: Dementia in Australia 

In 2011, there were an estimated 298,000 people with dementia. This number is expected to increase markedly over time, with projections suggesting it will reach around 400,000 by 2020 and 900,000 by 2050.  Download the Australian Institute of Health and Welfare (AIHW) report here

Explainer: what is Alzheimer's disease?

Alzheimer’s disease causes progressive damage to the brain, resulting in problems with memory, cognition, social engagement, and, ultimately, a person’s ability to care for themselves. Click here to learn more.

Kate Swaffer's blog

Insight guest Kate says writing helps her create her own memory bank, keep tabs on life and remember who she really is.

Transcript

RAY MORGAN VIDEO PLAYS:

RAY MORGAN:  I just find it gives me that feeling of freedom, feels like in a way I'm driving a car. And I find with dementia anything you can enjoy helps you with the condition.  Let's just see if I can find my teabags. Can't find the tea bag. I'll just get the pot of teabags. 

I have a little note here reminding me of when I have my meals, my breakfast, lunch and dinner. There have been a couple of times I've forgotten a meal and it's just safer if I have notes around and pretty much don't miss them, particularly if they're on the wall. And leaving them right beside the front door so when I walk out the only thing I have to remember is look at the floor, I know where I'm going to. 

JENNY BROCKIE:  Welcome everybody and welcome Ray, thanks for joining us tonight. Now you live alone, what is it like managing with dementia living on your own? 

RAY MORGAN:   I tend to think it probably is better for me. 

JENNY BROCKIE:  Why? 

RAY MORGAN:  I think if I had a partner and that partner was looking after me, and then putting up with all the silly things I tend to do around the place at times because I am forgetful, I think that would be very frustrating.

JENNY BROCKIE:  So you feel within yourself that you can cope better on your own? 

RAY MORGAN:  Well, that's the other side of it,  I think doing my own things, everything from cleaning the house, doing my own food, sourcing my own foods, planning my days, planning my week, the whole lot, means that I'm using my brain the whole time, and I'm not just vegetating, I'm busy. 

JENNY BROCKIE:  I just want to make it clear to everyone too that tonight we're not talking about the causes or the cures for dementia, we're talking about living with it. Because I think it's an estimated 400,000 people are going to be living with dementia by the year 2025. You're 63, you were diagnosed with Alzheimer's dementia two years ago? 

RAY MORGAN:  Yes. 

JENNY BROCKIE:  How did you find out that you had it? 

RAY MORGAN:  A friend, a girlfriend actually, I found myself as a single man only about two years before I, I actually had dementia, and in that time I'd, I'd met up with a former girlfriend, we knew each other when we were teenagers and we got together again. It was really good. But after about six months she said to me: "Ray, I think you've got a problem." And I said: "In what way?" And she said: "You're forgetting things all the time." She said: "You ask me a question and I'll give you an answer and then five minutes later you're asking the same question again and you're repeating yourself continuously and you don't know you're doing it." And… 

JENNY BROCKIE:  How did you react when she said that to you? 

RAY MORGAN:  Well I was sort of surprised because I didn't think I did any of that. And so what she did was suggest that perhaps I go with her and see her doctor and so we went and saw her doctor and it was her doctor that actually sent me onto the clinic that then diagnosed, diagnosed me later on as having dementia. 

JENNY BROCKIE:  And how did you react to that diagnosis? 

RAY MORGAN:  I sort of felt okay, I was feeling good, I was still doing the things I like doing in the world around me, but it was a second thing they said that really upset me and that was that I had to stop driving my motor car and when that was that…

JENNY BROCKIE:  Is that right?  Fiona, you're his daughter, that was a bigger thing than being told he had dementia? 

FIONA MORGAN:  Yep, he didn't - he wasn't concerned that he had dementia, he was concerned that he couldn't drive a car. 

RAY MORGAN:  They could have chopped my head off, I wouldn't have cared.  Losing the car that was the hardest part of all. 

JENNY BROCKIE:  Why was that so hard? 

RAY MORGAN:  Because that was how I filled my day in.  I'm a single man, I live alone, I just go driving.

JENNY BROCKIE:  And that's why the bike's important, yeah? 

RAY MORGAN:  Well I get around that bike and that's replaced that a bit for me. 

JENNY BROCKIE:  Now you're a retired police superintendent? 

RAY MORGAN:  Mmm. 

JENNY BROCKIE:  Do you have any idea or any thoughts about how long you might have had the first signs of dementia for? 

RAY MORGAN:  I think I might have had it anything up to maybe four years before I was diagnosed. 

JENNY BROCKIE:  And why do you think that? 

RAY MORGAN:  I joined up when I first moved down to where I live with the Senior Citizens Club and, um, every Thursday they would meet and they would play carpet bowls.  So the first day I went I played carpet bowls with them. I know how to play carpet bowls, when I was in the police force on our lunch breaks we used to play carpet bowls. And do you think I could get those carpet bowls to go the way I wanted them? I'd bowl them, I meant to go that way and it would go that way and we were playing in teams, teams of three, and I was wrecking it for my team members. And it got to the stage that these guys trying to help me, when I'd put the bowl in my hand they would hold my hand with their wrist, rather my wrist with their hand, and help me bowl. And I just thought, I couldn't understand, this is before I was ever diagnosed. 

JENNY BROCKIE:  How long before? 

RAY MORGAN:  Oh, this would be two years beforehand. 

JENNY BROCKIE:  Okay. 

RAY MORGAN:  Couldn't understand why I couldn't get the, you know, the reflexes right and so I stopped. I stopped going to the senior citizens group, it was just too demeaning. 

JENNY BROCKIE:  Has anything surprised you about having dementia? 

RAY MORGAN:  How many friends I've got. I've had so many people come and I’ve had so many lunches out and free, everyone shouts. 

JENNY BROCKIE:  And they drive you around? 

RAY MORGAN:  Yes, I get driven around. 

JENNY BROCKIE:  So far life's not too bad? 

RAY MORGAN:  My daughter thinks, and I think the same thing, she said to me:  Dad, you seem to be happier since you had dementia than what you were beforehand, and that's when I was living alone - driving my car around just filling in time. Now I've got dementia I've got something to focus on and I'm always rehearsing and then working at the end of the day to see how I think I'm going. I'm treating it like a challenge. 

JENNY BROCKIE: He seems to be coping remarkably well Fiona at this point. Is that it straightforward or is it more complicated than that? 

FIONA MORGAN:  Um, yeah probably a little bit more complicated than that. I think the disease is definitely progressing. However, what I have noticed is that his attitude, as his disease increases and he becomes more forgetful, his attitude becomes better and he sort of tries, I don't know, keep that positive attitude going and it does make a difference. So I don't know how hard you have to try to sometimes be positive like that but seems to be pulling it off. 

RAY MORGAN:  Surprising, it was easier than I thought.

JENNY BROCKIE:  Have you always been like that?  Have you always been a glass half full kind of person? 

FIONA MORGAN:  No. 

JENNY BROCKIE:  Your daughter says no? 

RAY MORGAN:  I was in the police force for 35 years and I think that probably taught me to be a little bit cynical, a little bit untrusting of people.  If anyone told me any story, this was in my own home, not just when I was at work, or even out with people that I was with, if anyone told me a story I'd, I'd have one, you know, I'd be listening with that ear and thinking this is bullshit with the other ear. Always a little bit careful what people tell you, don't believe everything everyone - and that's the way I've been.  And I was with that with dementia at the start and it wasn't getting me anywhere, it was making me worse and I had to do something about it. 

FIONA MORGAN: We were really worried. 

RAY MORGAN:  I cried one day, didn't I? 

FIONA MORGAN:  Yeah, more than once.

RAY MORGAN:  Lost it in front of my son and my daughter. 

FIONA MORGAN:  Yeah.

JENNY BROCKIE:  Kate, you were diagnosed with fronto temporal dementia seven years ago when you were 49. What was your life like at the time when you got the diagnosis? What were you doing? 

KATE SWAFFER: At the time I was working full time. We had 17 and 18 year old boys, one doing year 12. I was studying at university, volunteering, you know, doing the usual mad mother thing, you know, no time for anything. 

JENNY BROCKIE:  And how did you react when you got that diagnosis? 

KATE SWAFFER: I'd have to say I cried pretty much nonstop for weeks.

JENNY BROCKIE:  And did you have signs that were you worried about it or did it come out of the blue that diagnosis? 

KATE SWAFFER: I did have signs but I didn't ever think that it was going to be dementia.  So I had a near perfect memory and spelling and numbers and things, it was very high level, and suddenly I couldn't spell 'that' and I still can’t spell 'that' anymore and I was getting numbers back to front and colours mixed up and getting lost on the road.

JENNY BROCKIE:  Tell us a bit about some of the other things that you've done since you've had the diagnosis? 

KATE SWAFFER: I mean when I was first diagnosed and once I lost my driver's licence I had to give up work because I needed a car to drive, I needed a licence for that job. But being at university and being a mature age student I talk to one of the lecturers who had become a friend and said do you think I should give up and she said don't be so stupid. Go and see the disability advisors and their team and they'll support you with strategies to help you get through your degree. So I did finish a couple of undergraduate degrees and I've also done a masters of science since then.

JENNY BROCKIE:  What do people expect when they find out you have dementia? 

KATE SWAFFER: I think that as a whole, even health care sector, thinks dementia is end stage, meaning, you know, we're either taking our clothes off somewhere inappropriately or dribbling down our front and it's not like that.

JENNY BROCKIE: Do people treat you differently?  I mean Ray talked about friends flocking to help him, has that been your experience? 

KATE SWAFFER: Mine's been the exact opposite.  

JENNY BROCKIE:  In what way? 

KATE SWAFFER: Um, I've had friends just disappear, literally. So very few have said why? I'm sure that none of it's been through mal-intent, I'm sure it's just that they don't know what to say.

JENNY BROCKIE:  But that's a big life change for you if your friends just…

KATE SWAFFER: Friends and family, apart from my husband and two children we haven't got any family support. So that's just the way it is but I've got loads of new friends.  So there's kind of a dementia community.  We do have a couple of hands full of really close friends who have really stuck through everything with us and I would hate them to think that we don’t love them for it.

JENNY BROCKIE:  And I think that is absolutely important to say.

KATE SWAFFER: You know, the colleagues, the older friends - a lot of people. 

JENNY BROCKIE:  And what's it been like for you Peter? 

PETER WATT: Um, I think at the start, pretty horrific. I think that, um, dementia is a, everybody wants to define you as something - they want to position people either as carers or something whatever. 

JENNY BROCKIE:  And you don't like being called a carer? 

PETER WATT: I hate being called a carer. 

JENNY BROCKIE:  You like being called a husband? 

PETER WATT: Well I love Kate and cared for Kate before Kate was diagnosed and I still love and care for Kate now and that's got nothing to do with being the carer. Kate and I have a very good relationship, always have had, and it's not that there aren't challenges to overcome as we travel down this path but what I, I'm not Kate's carer and I don't intend to be Kate's carer. 

KATE SWAFFER: I call him my BUB, my back-up brain.  So just like a back-up in your computer, so when I need him he's usually there. If he's not I bang him on the head, and sometimes he might see that…

JENNY BROCKIE:  Interesting the dynamics, I find this really interesting, this dynamic, because you wait till you're asked for help? 

KATE SWAFFER: Unless I'm really stumbling.

PETER WATT: By defining that role for me, which basically said, you know, if, if Kate needs something she asks me for something, I can do that, right? Or if it's life threatening I do that. Other than that, really, I'm stepping, I'm stepping in her life and taking that over and really I have no right to do that if she's travelling okay? 

JENNY BROCKIE:  Yeah.  Cassandra, you're a neurologist, just define for us or explain for us what dementia actually is, just so people can get their bearings about this. 

ASSOCIATE PROFESSOR CASSANDRA SZOEKE, UNIVERSITY OF MELBOURNE:  Sure. So dementia is basically an alteration in cognitive state and it's a progressive disease that leads to impaired cognition such that you can't perform day-to-day functions and that's the diagnostic criteria, if you like, for dementia. So dementia is a symptom I've just described but underlying those symptoms is a disease and there's a variety of neuro degenerative diseases.  The most common form of dementia is Alzheimer's dementia. 

JENNY BROCKIE:  And how predictable are the symptoms and the progression of the different types? I mean how much do they differ from one another? 

ASSOCIATE PROFESSOR CASSANDRA SZOEKE:  So the different dementias differ quite significantly but also within any one type of dementia people can have different clinical pictures.  Also I was interested in what Kate and Ray were talking about keeping active and still doing things, despite the fact they had dementia. We know also that people with dementia who also have vascular disease will progress more quickly than people who have just pure Alzheimer's disease. So you know, keeping up those prevention of dementia activities can actually help. 

JENNY BROCKIE:  So look after your heart, do exercise, all those kinds of things that are helpful?  Once you have it can you do anything to slow it down? 

ASSOCIATE PROFESSOR CASSANDRA SZOEKE:  That's a million dollar question. So we're working very hard to do things to slow down dementia. At the moment the only available treatment are symptomatic treatments so that means the medications that we currently have available can improve the symptoms of dementia, so that really means that people can be more functional in their day-to-day lives with these medications. 

JENNY BROCKIE:  And…

ASSOCIATE PROFESSOR CASSANDRA SZOEKE:  There is nothing that treats the underlying disease to date or that changes the progression of the disease.

JENNY BROCKIE:  Elmer, you're 73, you were diagnosed with Lewy Body dementia and Parkinson's four years ago, how are you managing at the moment? 

ELMER ANDERSON:  At the moment we're going reasonably well. But my anger management has been quite good because I didn't think and wouldn't accept that there was something wrong with me for a long while.

JENNY BROCKIE: And work had been a really big part of your life, hadn't it? 

ELMER ANDERSON:  Yes, I mean I was a workaholic, you might say that, and that's in the true word. 

JENNY BROCKIE:  So when did you decide to give up work? Was there something that happened that made you think you needed to give up work? 

ELMER ANDERSON:  Ah, we had a couple of pretty bad investments, I would say, and we changed different, Parkinson's given me…

JENNY BROCKIE:  Yes, it gives you the shakes? 

ELMER ANDERSON:  Yeah, and we decided we would retire because I was 65 now and I was over with and I felt myself I couldn't be steady enough to be an electrician with high wires.  So we gotten onto the doctors and then the doctors to the neurologist, we found that after a lot of testing, an awful lot of testing, that I had Lewy Bodies dementia. 

JENNY BROCKIE:  So how was, how did you react when you were told that? 

ELMER ANDERSON:  Disbelief mostly. No, there's nothing wrong with me, but there is. 

JENNY BROCKIE:  Yeah, and how did the specialist explain the illness to you?

ELMER ANDERSON:  He said you've got a Christmas tree and you've got lights on it. Whole heaps of lights and they're blinking on and off and on and off and on and off and they're sending, they sent light to that particular globe all of a sudden didn't work anymore. But the next time it went to that one it worked. So it was so hard to decide that yeah, that was what was wrong and that was what was …

JENNY BROCKIE:  So it was unpredictable in a sense? 

ELMER ANDERSON:  Unpredictable, totally unpredictable. Yeah, one minute I was alright putting a screw in a screwdriver, next minute all over the place. 

JENNY BROCKIE:  Elmer, you decided to check yourself into an aged care facility called Starrett Lodge on the New South Wales Central coast. 

ELMER ANDERSON: Yeah. 

JENNY BROCKIE:   Why did you decide to do that?  Why did you make that decision? 

ELMER ANDERSON:  Well, I had had one more episode at home where I got really cranky and started yelling my poor wife, as I said, and between the doctors, Joan and myself, we decided that, yes, I would go to a facility when they felt it was necessary so that I wouldn't harm my dear wife.

JENNY BROCKIE:  So you'd been going to respite care at Starrett Lodge.  When you had that meeting with the doctor what was that like for you when you came, you all came to that decision? 

ELMER ANDERSON:  I resigned to it. Yeah, I've got to go, got to go, I can't do anything else. 

JENNY BROCKIE:  Was it a hard decision for you to make? 

ELMER ANDERSON:  Oh, not easy, no, not easy, but it was a decision that had actually been made over months so it wasn't an overly, you know.

JENNY BROCKIE: And now, what's it like for you living there now? 

ELMER ANDERSON:  I haven't got a car. 

JENNY BROCKIE:  Another one without a car. Yeah.  Joan, you're Elmer's wife, it took a long time before he was correctly diagnosed with dementia, why? 

JOAN ANDERSON:  Yes. Well, because the doctor thought it was depression. I knew it wasn't depression because I'd had his mum was living with us and she had, um, dementia of some sort and so I saw some of those things in Elmer. So I recognised all of that and I kept saying to him, this is our normal doctor, and he said you can't say things like that, that's not nice to say that about your husband and I said it's not that I'm accusing, I want some help for him to get quality of life. 

JENNY BROCKIE:  Because it sounds like things were very difficult for you at home at that stage and I know you don't want to go into that? 

JOAN ANDERSON:  Yeah. 

JENNY BROCKIE:  But you were having problems, yeah? 

JOAN ANDERSON:  Well in the beginning anyway, the doctors tried him on all sorts of antidepressants and I sat there and said what a waste of time, he's got dementia.

JENNY BROCKIE: So was there a turning point for you where you thought this can't go on? 

JOAN ANDERSON:  Well, they noticed a tremor in him and finally they said he's got Lewy Body dementia.  So he went into hospital for about a month and they took him off all his medications and slowly introduced different medications and they got him where he is today. He's on 32 pills a day to keep him stabilised.

JENNY BROCKIE: And what's your relationship like now compared to what it was like when you were living together? 

JOAN ANDERSON:  Oh, a lot better.

JENNY BROCKIE:  How would you describe the relationship now, Elmer, compared to what it was like before? 

ELMER ANDERSON:  It's, it's much better than what it was like before, yes. 

JENNY BROCKIE:  In what way? 

ELMER ANDERSON:  We seem to be more loving to each other than what we were at the time. 

JENNY BROCKIE:  And why do you think that is? 

ELMER ANDERSON:  We don't live together any more. 

JENNY BROCKIE:  A lot of people might relate to that.

JENNY BROCKIE:  Well Colin, you run Starrett Lodge where Elmer is living. Tell us about it and the thinking behind the way it's set up? 

COLIN MCDONNELL:  Well it's been respecting people and looking for their abilities rather than their disabilities and look at how you can enhance a person's life, giving them meaningful occupations, participate in life as much as possible basically.

JENNY BROCKIE:  Now tell us about the bucket list, how does the bucket list works? 

COLIN MCDONNELL:  The bucket list, so basically we have a committee of people, so they draw their name out of the hat, then they'll say what they want to do.

 

THE BUCKET LIST VIDEO PLAYS:

 

COLIN MCDONNELL:  What would you like to do in your bucket list, Mary?

MARY: What would I like to do on my bucket list? Anything that's different. Ahh...

MAN: Go in a submarine?

MARY: No, I don't think so - that's going far too far for me. No, I think I'd like to go in a helicopter.

WOMAN: Well, it was an experience, alright, because I thought I was going in a helicopter, and Vicky said, "Would you like to go on a balloon ride?" I never thought about that. We had breakfast - a champagne breakfast - and it was delicious.

WOMAN 2: I was so nervous... I was so nervous, yeah... It's all over me... I was so embarrassed.

WOMAN 3: They took me to Toowoon Bay, they put me in one of those wheelchairs with the big wheels, and took me right down to the beach because I wanted to feel the sand under my feet. It was absolutely beautiful. I had a beautiful day. I'll never forget it. Thank you.

WOMAN 4: A young gentleman that took me in a private limo - took me in a private limo. Then when we got out there, we had the waiters come and put the napkins in your lap. We were treated like ladies.

REPORTER:  What was your view like?

WOMAN 4: Absolutely right over the beach - we could see everything. It was wonderful.

NURSE: With a few wines in her.

WOMAN 4: Oh, yes!

 

JENNY BROCKIE:  The day that we visited Starrett Lodge some of the women were baking to raise money for the bucket lists and there are other ways that these residents raise the money. Tell us about the calendar? 

COLIN MCDONNELL:  Yeah, sometimes they get out and do things and tell me when they're finished. 

JENNY BROCKIE:  So this is to raise money for all these activities? 

COLIN MCDONNELL:  Yes, to raise money for that so they have secret women's business meetings and things like that.  So they go around saying they decided to make a calendar and they sell the calendar, so it was a pretty special calendar. 

JENNY BROCKIE:  We've got some shots of the calendar. So this was a surprise to you? 

COLIN MCDONNELL:  Oh, very much a surprise. 

JENNY BROCKIE:  And how's it been selling? 

COLIN MCDONNELL:  The calendar goes quite well actually and it also…

JENNY BROCKIE:  Covering up these faces. 

COLIN MCDONNELL: They've also have written a book, I can quite tell you that they were very well dressed in those photos by the way and it was just the shoulders that you could see. 

FEMALE:  Just checking, I didn't know what was coming. 

COLIN MCDONNELL:  They made those decisions and that's their life. If you're going to advocate that people have a right to have a decision in their life and they've got the capacity to make those decisions, and then they should be entitled to do it and enjoy life and they had a lot of fun doing that and fun is part of life. 

JENNY BROCKIE: How old was the person who did the parachute jump? 

COLIN MCDONNELL:  86. 

JENNY BROCKIE:  86. 

COLIN MCDONNELL:  That last bit on the ground was the longest time in my life.  Waiting for him to get up from that ground I prayed to both popes, the old Pope, the new Pope and everybody. It seemed like forever but it only took a couple of minutes and he was just enjoying the experience. And I said to him not so long ago what, what did that really mean to you and he said it felt like I was free and I was ageless.  And when you're 86 and you've been through the war and you want to experience something like that, so I think it's our duty that we allow that to happen. 

JENNY BROCKIE:  There's a risk element here? 

COLIN MCDONNELL:  There's a risk element and you've got to be careful with that and it's got to be a calculated, evaluated risk, but he wanted to do that so much so we enabled that and it's probably been one of the highlights of my career as taking that risk even though if something had gone wrong on the ground then I would still be filling in forms I would daresay today. But it was good and it turned out really well and it became a story of the family, now it's going to be passed on forever and a day, you know. 

JENNY BROCKIE:  Graeme Samuel, you're mum Shirley lived with vascular dementia for about fifteen years and she died in 2006 so that's quite a while ago. I just wonder how you felt listening to some of these things that have been described.  Was that, were those things available to her when she had dementia? 

GRAEME SAMUEL, ALZHEIMER’S AUSTRALIA: This is the amazing thing Jenny, you would never, twenty odd years ago, fifteen years ago, have had a program such as this where there are people explaining what it's like living with dementia. In fact we never actually told mum that she'd been diagnosed with dementia and it took some four years for us to actually be able to get her to an experienced geriatrician who could actually diagnose her as having dementia. And she kept wondering what was going on, she was frustrated, she was confused, she was angry. Her friends deserted her.  Kate, I have a lot of empathy with what you've been through. 

JENNY BROCKIE:  So there was kind of like a cone of silence almost around the whole thing in a way? 

GRAEME SAMUEL: That was it. And it wasn't the stigma, it was just we didn't know what to do. We didn't how to deal with it.

JENNY BROCKIE:  How do you feel now about not having told her the real reason, Graeme? 

GRAEME SAMUEL: Oh, the difficulty is actually knowing what to do. You just don't know.  Mum progressed quite quickly through the process of dementia.  She moved from, I have to say when dad died she was the rock that held the family together. She was incredible and then she found things were just getting too much.  The Friday evening dinners that we used to have with the whole family and she just couldn't cope after a while. It was a tradition we'd had for years, for decades, she couldn't cope with the grandchildren and the children.

JENNY BROCKIE:  Neil, you're Graeme's younger brother and you were the primary carer for your mum, for Shirley, what was it like when you put her into aged care? 

NEIL SAMUEL, ALZHEIMER’S AUSTRALIA:  Oh, it was tough. It's still tough thinking about it. But it was the right decision, we had to make a decision and we made the decision together, the four, the four sons.  Somehow I got the short straw, I'm not too sure, I was involved in pulling the straws but it needed to be done.

JENNY BROCKIE:  And she was tough on you about that, wasn't she? 

NEIL SAMUEL:  Yeah, she, it was just one of those things you know that you can have a day when she was cognitively perfect and as she approached the entrance she looked up and she saw the sign.  She realised what was happening unfortunately on that day and said to me: "Neil, there's going to be a death in this family and it's going to be on shoulders." 

JENNY BROCKIE:  Wow, that is really tough? 

NEIL SAMUEL:  It was tough. But we pushed ahead because we knew it was the right decision. Sure, I went around the corner and wept but it was the right decision. It was time for it to happen and so then the journey for the next ten years in the facility as her, as her disease progressed. 

JENNY BROCKIE:  And Graeme, at the time you were the chair of the Australian Competition and Consumer Commission. What was it like trying to balance that job and you had a public profile, you were giving media conferences and all sorts of things.

GRAEME SAMUEL: Very tough but I'd have to say Jenny that was not the real problem and it's hard to actually admit this but I would go and see mum and I would leave her and sit in the car and just bawl my eyes out.  It was just so hard to see your mother, see mum and I had a really close relationship. I used to stand beside the sink with her after dinner every night and I'd dry the dishes as she washed them and we'd talk about things. Things that were quite personal between us and I'd sort of lay out my problems and you know, she would give the answers. Like she was very close and then to see this person suddenly start to deteriorate and not even recognise who you are, not being able to eat.

In fact there was one light moment we had where she had a grandma, grandma Sloman, grandma Sloman used to live with mum and her parents and she was quite a disciplinarian, came from the Victorian era, and they used to use grandma Sloman as the discipline on mum and what Neil used to do was to say to her Shirley,  if you don't eat I'll call grandma Sloman and that worked a treat for a while until one day she said: "And what are you going to do, go out to Springvale Cemetery and talk to her there?" Realised she suddenly showed that she knew that grandma had passed away years ago. 

JENNY BROCKIE:  Mandy, you work to improve the lives of people with dementia. Let’s have a look at the kind of thing you do?

 

MANDY’S VIDEO PLAYS:

 

MANDY NOLAN: Vince, you have been going out with Alma - pretend, obviously - but you want to ask her to marry you.

VINCE: I want to marry you, and I've got a lovely ring.

MAN: Get on your knees!

ALMA: Yeah, that’s lovely, can I have one.

VINCE: You can wear it now, because you're engaged.

MANDY NOLAN: What do you say, Alma?

ALMA: It's lovely!

MANDY NOLAN: Are you going to marry him?

ALMA: Why not?

MANDY NOLAN: Tom, can you just feel his stomach a little bit, investigate it? Just have a bit of a push?

MAN: I've got this unusual thing here. I don't know what it is. Have you ever seen anything like this?

TOM: I can advise in one way - you are not pregnant.

MAN: Well, that's a relief.

MANDY NOLAN: Tom's come out of this...

TOM: Did he?!

MANDU NOLAN: Yes, he did!

TOM: Ohh!

MANDY NOLAN: Tom, you're going to go around - he's going to give you a wish. Ted? Yep, go for Ted.

TED: It's been a great life. I wish I could do it all over again.

 

 

JENNY BROCKIE:  Really interesting to see, to see that. Because in some ways it's counterintuitive, isn't it?  You know, people like look at it and think oh, aren't you just confusing people by getting them involved in role plays all sort of things like that? 

MANDY NOLAN:  Yeah, and amazingly the opposite happens because you're giving people prompts. I think normal life is really confusing because there's no visual prompts and you're expecting people to reflect back or reflect forward, so when I work I create moments and because people who live with dementia are amazing improvisers and so I'm building on something that actually really more skilled than people without dementia. So after eight weeks you'll see people and, you know, I'll start off with thirty second improvisations, they'll be ten minutes by the end and they shouldn't be able to do that. And… 

JENNY BROCKIE:  And they're drawing on all kinds of cognitive skills? 

MANDY NOLAN:  They building on what they do each week and it gets bigger. People aren't remembering what they've done but their competency has built.  I had one lady that had, I didn't realise till her daughter turned up, she'd hadn't spoken for two years and she was the middle of an improvisation dressed as an Arabian Princess with two men on either side and I said which one will be choose and she said I'll choose whoever lasts the longest.

JENNY BROCKIE:  Cassandra, what did you want to ask? 

ASSOCIATE PROFESSOR CASSANDRA SZOEKE:  Well I wanted to say we know even a person at end stage dementia who is unable to form new memories and might not remember that you were there five minutes ago, all day will remember the emotional happiness. 

MANDY NOLAN:  And that's what happened. Nobody ever remembered going there, but the people, you know their partners or the people they lived with were saying but they were in a really good mood that night and they were much more communicative and it went on for the next couple of days.

JENNY BROCKIE:  Kate? 

KATE SWAFFER: Yeah, I think that's really forgotten in dementia care. We're just human beings who want to have fun, the same as we did before dementia, and we use humour quite a lot in our family. nd I'm trying to write a comedy about living with dementia.

DORIS YOUNANA:   So am I. 

JENNY BROCKIE:  You two should get together. 

KATE SWAFFER:  I've got a couple of young comedians who tracked me down on my blog and I'm working with them but there's lots of funny things about having dementia every day if you don't get lost in the sadness because it is sad as well. 

DORIS YOUNANA: Well it's a long time to be lost in sadness, I mean we've been going ten years. 

JENNY BROCKIE:  Tell us about your situation.

DORIS YOUNANA: Mum's probably ten years now, yeah, so she's at home, she's still at home, she's at end stage I suppose we'd call it, end stage dementia, Alzheimer's.  She's in a great place, she's really happy. There's seven of us, we're around her all the time, there's kids interacting with her, she sits at the dinner table. We feed her, we change her we do all that but it's daughters doing it. I'm not a carer, I'm her daughter. 

KATE SWAFFER: She's part of your family. 

JENNY BROCKIE:  You're also an actor? 

DORIS YOUNANA: Yes I am. 

JENNY BROCKIE:  And you say that helps.  Why? 

DORIS YOUNANA: It does because there are the whole improvisation skills that we have. Mum used to think that her mum and dad were down the road so we'd knock on people's houses and pretend they weren't home and then I'd say oh, they're not home, we'd be at the traffic lights, I've just called them, they're not home so it's okay.

JENNY BROCKIE:  So you just rolled with the things rather than trying and correct her? 

DORIS YOUNANA:  Yeah, it changes every day. That's right so we just continued to play it that way.   So mum was always right. I was stealing stuff, absolutely I stole your ring I'll put it back, so I'd get a ring from Diva and throw it back in the box. Oh, my ring's back.  You've just got to think on your feet and I think you've got to be creative and use improvisation as a skill. 

JENNY BROCKIE: And you take her out to lunch every week? 

DORIS YOUNANA: Oh, yeah, it's interesting when we do, we've had some issues with toilets and things but we do, we still take her to the shops and she loves it. As soon as she goes into it it's like a memory recall for her, look at her. 

JENNY BROCKIE:  She has a great face, great smile. 

DORIS YOUNANA: Yeah.  I refuse to give up on mum and I won't give up on her till the very, very end and she will, as far as my father's concerned she'll be home till the day she passes and I certainly want to make that wish come true for him. 

GRAEME SAMUEL: Jenny that's a really important comment, I mean your mother is very fortunate, she's got seven children. 

DORIS YOUNANA: Yeah. 

GRAEME SAMUEL: To take care of her and that's terribly important. There are, of the 330,000 odd people diagnosed with dementia, there's about 70,000 still living in the community.  You've got to also assume that there are a significant number that are in aged care facilities that probably don't need to be there. 

DORIS YOUNANA: That's right. 

BERNIE LOGO:  It's also more comfortable for us to be perfectly honest having mum at home because when we go to visit we're there for hours and on end. 

JENNY BROCKIE:  And you're in a comfortable space. 

BERNIE LOGO: That's right, I can go and get a cup of tea whenever I want it and make whatever food that I want and Zeke's there and he'll bring his friends over.  Whatever needs to happen it's just more comfortable. So whilst I think it's great for mum, for us it's pretty awesome as well having her at home. I wouldn't want to be visiting her anywhere else. 

JENNY BROCKIE:  And Zeke, what's it like for you when you visit your Tata, your grandmother? 

ZEKE LOGO:  She usually gets her up and I'd walk in front of her, then she would usually walk, follow me, and once I've got to the bedroom then she'll just look back at me and I smile at her and she'll usually smile back. 

JENNY BROCKIE:  What's she like as a person, what's your Tata like? 

ZEKE LOGO:  Happy, funny, just very happy. 

JENNY BROCKIE:  Yeah. Are there ever any funny moments with her? 

ZEKE LOGO:  Yeah, lots.  Sometimes she rolls, my Jitu, that's my grandpa, he would give her a newspaper or I would and just say she's angry and she would hit my mum on the head with the newspaper. 

DORIS YOUNANA:  That's funny by the way. 

JENNY BROCKIE:  Yeah, that's funny. 

BERNIE LOGO: That's when I know mum remembers me because we always had a very, one of those tough relationships growing up so she clearly remembers me when she does that. 

JENNY BROCKIE:  She remembers that and gives you a whack every now and then? 

BERNIE LOGO: Oh absolutely.   I figure, yeah, you've worked out who I am today, that's why you hit me with the newspaper. Yeah, no, it's pretty good.  They have just got a really beautiful relationship.

JENNY BROCKIE: They're lovely photos Zeke? 

BERNIE LOGO:  Yeah, and he can actually get her to do things that I really can't so you know, she can be really quite stubborn with me and you know, I try to say come on, we're getting up, and she won't and Zeke will come in and say come on Tate, let's get up, and she's up and it's like, yeah, you're not listening to me again.  But it's yeah. 

JENNY BROCKIE:  But some people, I've heard of people being tentative about kids being in involved with people with end stage?  And that's changed over time too, hasn't it, Graeme and Neil? 

GRAEME SAMUEL: Very, very much. I have to say that back when we were living with mum and she was living with dementia, we actually gave our children the choice. But I have to say at the time we were a little concerned that they would not remember her in her, in state in which they'd always known her, that is with full cognitive ability and we were concerned that perhaps it wouldn't be the right thing for them to see her in that state of cognitive decline. I'm not sure that I would do that again today.  There are so many things we wouldn't do again today. We would, if she was alive today we would tell her and be quite open with her. 

DORIS YOUNANA: It's hard and you can't beat yourself up about it because you're making decisions at that moment and thinking that they're the right ones. We've made lots of wrong ones, we have, but you know, you just…

JENNY BROCKIE:  And things are of their time too. 

DORIS YOUNANA: Yes, they are. . 

JENNY BROCKIE:  How does she react when she hears Lebanese music? 

DORIS YOUNANA:   It's like an awakening, it's quite extraordinary - mum used to sing quite a lot, she used to sing all the time and she would get up and sing at the drop of a hat and she loves a singer named Fataluse who is known in Lebanon, you know, she's like, she represents Lebanon. 

JENNY BROCKIE:  In Arabic, would she sing in Arabic. 

DORIS YOUNANA: Yes, definitely, that's her first language, but now when she hears her she'll cry.  She'll just, tears will run down her face or her arms will go up and she'll smile or she'll look at you like I can hear her and it's quite amazing, you know, and the songs sometimes that you put on you think oh, my God, she's, you know, mum's upset. She understands. 

JENNY BROCKIE:  Liam, tell us what this is beside you? 

LIAM MCGUIRE, OPAQUE MULTIMEDIA:  So what I've got sitting next to me, it's a virtual reality headset and what it's doing at the moment it's running a thing called the virtual dementia experience and she's going to run through. 

JENNY BROCKIE:  Okay, Doris. I want you to pop that on. 

DORIS YOUNANA:  Just sit here with this on. . 

JENNY BROCKIE: Yes. 

DORIS YOUNANA:  Okay, Darth Vader. 

LIAM MCGUIRE:  So Doris is now inside the virtual world that we created for the VDE. 

JENNY BROCKIE: And it's up on the screen. What Doris is seeing is up on the screen here. 

LIAM MCGUIRE:  Yeah, so she's seeing a standard kind of suburban home like you might find being built in the '70's.  These are all really familiar elements for us, we see the world much like this. We see, you know, a standard carpet, a standard window and we have an expectation about what the environment looks like. The trouble is when you're talking about someone who may have symptoms of dementia who may also have deteriorations associated with aging, things can look quite different.  So some of the things we can do, I can add a cataract filer. 

DORIS YOUNANA:  Oh, yeah. 

JENNY BROCKIE:  So you see the blowing out of the light in the window and things like that? 

LIAM MCGUIRE:  Yes, so things like hypersensitivity of the optic lens.  So these are all associated with aging in a general sense.  Some of the other things we can do, we can simulate aspects of things like Lewy Body's dementia or just perceptual and cognitive issues that are and very, very commonly reported.  So if I can get Doris to look down at the carpet beneath her. 

DORIS YOUNANA:  Yeah, I don't like that. 

LIAM MCGUIRE:  This is a very, very commonly reported symptom. 

JENNY BROCKIE: Oh it's moving. 

LIAM MCGUIRE:  High frequency noise, things like a carpet pattern can actual look like there are insects walking on it. 

DORIS YOUNANA:  Oh yeah, that wouldn't be good, would it? 

LIAM MCGUIRE:  And it can be very hard to distinguish that actual pattern from…

JENNY BROCKIE:  Can you imagine what it would be like walking on that Doris? 

DORIS YOUNANA:  Well mum stalls all the time so she's probably seeing stuff like this and then just stops. Because we can't move her, she just stops so that's probably not helping her. 

LIAM MCGUIRE:  So some of the other things, the mirror directly in front of you Doris. 

DORIS YOUNANA:  Yes, oh, yeah.

LIAM MCGUIRE:  It's quite often reported that there's a window there and someone's looking at me. 

DORIS YOUNANA:  Yeah. 

LIAM MCGUIRE:  And someone's watching me through a window.

DORIS YOUNANA:  Yeah, but my mother would hit glass and she'd talk to the glass, so maybe that's what she was seeing? 

LIAM MCGUIRE:  So another one of the things, if you look to the right Doris, we have polished wood floor boards. 

DORIS YOUNANA:  The fact that you're a talking to me and I can't see you is freaking me out.  You know that, don't you? Sorry. 

LIAM MCGUIRE:  Virtual reality. 

DORIS YOUNANA:  Yes, very weird. 

LIAM MCGUIRE:  So we have polished wood floor boards which are is a relatively common feature, particularly in old homes. They look very nice and pleasing to us but the reflections can actually be very misleading. 

DORIS YOUNANA:  Yeah. 

LIAM MCGUIRE:  They could appear to be, for instance, water. 

JENNY BROCKIE:  They look like water, yeah. 

DORIS YOUNANA:  Oh my god.  And you'd never walk into that, I tell you that now, I would never put a foot forward into that. 

JENNY BROCKIE:  And you'd be trying to explain to somebody what you were seeing and they'd be not relating to what you were saying at all. 

DORIS YOUNANA:  Absolutely. 

LIAM MCGUIRE:  So there’s often a lot of trepidation particularly in the bathroom, you know – white on white porcelain which is common, particularly in modern houses.  It can actually be very distressing because not only is it hard to tell one thing from another but when everything is shiny and reflective, everything can appear to be a very different surface to what we may see.

JENNY BROCKIE:  Why did you develop this?  Have you got a personal connection with dementia? 

LIAM MCGUIRE:    Yes, my grandfather on my mother's side actually died with dementia about fifteen years ago. While I was growing up so while I was, you know, in my formative years and starting to form conscious memories he was already essentially past the point where his memory had degraded so that he couldn't recognise any of his family members and only a year or two after my first memories of him he stopped being able to talk entirely.

He was in a care facility and it was a very good care facility, they took wonderful medical care of him. He was treated like a kind of clinical problem to be solved in a clinical manner, rather than as all the things we're discussing here, it's a social problem as much as anything else. 

JENNY BROCKIE:  Doris, what was that like for you? 

DORIS YOUNANA:  Oh it's very, it's not good, it's not good at all.

JENNY BROCKIE:  It has raised your awareness… 

DORIS YOUNANA:  Oh absolutely. 

JENNY BROCKIE: Even though you're dealing with somebody with dementia all the time?

DORIS YOUNANA:  I would love every carer that's in our home to actually see that and maybe we could understand a little bit more of maybe what she's experiencing. Because you do, I mean you forget sometimes and you do, I do push mum into, only because it's 10 o'clock and I need to go and I've got to get to bed and, you know, I've got lines to learn the next day and then you, I go home and feel guilty.  But if I knew what she was seeing, if I knew that that's the image she’s seeing.

JENNY BROCKIE:  That's why she's doing what she's doing. 

DORIS YOUNANA:  Yeah. 

JENNY BROCKIE:  Colin, how could you use something like that?  I mean this is in the development stage.  How could you use something like that? 

COLIN MCDONNELL:  I think every facility or anybody living with dementia would benefit from that.

JENNY BROCKIE:  But if medical staff dealing with people had that experience, they would have a whole different…

COLIN MCDONNELL:  Not only that but architects, builders. 

JENNY BROCKIE:  Architects? 

COLIN MCDONNELL:  Engineers, I can see, you know, that's the world out there who design things. 

DORIS YOUNANA:  Yeah, interior designers. 

COLIN MCDONNELL:  Interior designers, all those people, you know. 

JENNY BROCKIE:  Richard Fleming, you do research into the kind of environments that help people with dementia. What are they? What does help?

PROFESSOR RICHARD FLEMING, UNIVERSITY OF WOLLONGONG: Well, something I call visual access is very important. That's having the opportunity to see everything that you need to see. In a poorly designed place, when you leave your bedroom door, you find yourself in a corridor on one end had could be a dead end, and on the other side it will be a T junction, and you won't have the faintest idea which way to get to the dining room. In a well-designed place, as soon as you leave your bedroom, you look down the corridor and you'll see the lounge or the dining room. And vice versa if you're in the lounge room - you'll be able to look up the corridor and see your bedroom door. If you want to go and get a cardigan, you can go and get a cardigan. That's one of about 10 design principles which are easily explained and can very - well, easily be put into practice.

JENNY BROCKIE: Mm. Other sorts of things?

PROFESSOR RICHARD FLEMING: What we really want is contrast - things that we want people to see...

JENNY BROCKIE: Not an all-white bathroom?

PROFESSOR RICHARD FLEMING:  Absolutely not an all-white bathroom. You'd be surprised how many all-white bathrooms are around.

JENNY BROCKIE: Graeme, you and Neil are now very active in raising awareness about dementia. Um, what do you think is the next step that needs to be taken in the community to actually raise awareness about some of these issues?

GRAEME SAMUEL: This program is a very important step because it does demonstrate what dementia is about and what it's not about as well. It is so, so fundamental now that we show people in the community what it is that dementia is really all about and importantly what it's not about. That people can live in the community and be very productive members of the community for so many more years and that you shouldn't actually fear someone having dementia or look at them with any sense of disassociation or stigma such as poor mum had to endure when she, you know, was diagnosed and when she started to show the symptoms.

JENNY BROCKIE:  Okay. And Ray, what message do you want to get out about living with dementia? 

RAY MORGAN:  I'm one of 35,000 people in Australia who live alone with dementia and my worry is how many people out there in our society who live alone have got dementia and don't even know it? 

ELMER ANDERSON:  Yeah. 

RAY MORGAN:  It's not until you live the experience that you start to understand what dementia really is all about. 

JENNY BROCKIE:  Well hopefully a few people might understand a little bit more about what it's about as a result of tonight. We do have to wrap up now. Thank you so much for joining us tonight, all of you, really appreciate it.  Everybody's story, it's been a really interesting program and that is all we have time for here but let's keep talking about this on Twitter and on Facebook.