Tonight we bring you a very special episode of Dateline, following one man’s journey with young onset dementia

Greg Kelly was diagnosed 3 years ago and began the difficult process of planning his future

As his illness slowly became worse, affecting his moods, speech and even his self-identity, he and his wife Janet were forced to weigh up care options

Would Janet care for him at home 24/7 or would he eventually go into a nursing home

Late last year Dateline followed Greg and Janet as they experienced a unique alternative in Denmark.

A dementia village, where the focus on care is on independence and dignity

It showed Greg and Janet a ray of hope for their future.

But sadly only a few weeks ago, Greg suddenly passed away.

Tonight’s emotional story is dedicated to Greg Kelly and his devoted wife Janet, and their efforts to raise awareness for the 26,000 Australians suffering from young onset dementia.

This is their story.

1

Greg: I'm Greg Kelly, known as 'Kell', and I have young onset dementia, in particularly I have frontotemporal dementia- [young onset alzheimers.

2

Greg: Come on. Two pears. Crunchy peanut butter.

3

VO: DEMENTIA IS A DISEASE USUALLY ASSOCIATED WITH OLD PEOPLE.

BUT GREG WAS DIAGNOSED AT AGE 59.

4

Greg: It's alright, I just don't know where to go. I can't...okay, you now have a champagne moment. Because I can't remember what peanut butter comes under.

5

And I've called it the champagne moment.

That's what people with young onset dementia have.

 it's where information gets put in - and then suddenly it just goes 'vooof'

and I've got no way of controlling it in my head.

6

VO: FOR FORTY YEARS GREG WORKED IN FINANCE - BUT HIS DEMENTIA NOW MAKES SOMETHING AS SIMPLE AS GROCERY SHOPPING  OVERWHELMING

8

VO: FOR GREG & HIS WIFE JANET, CARING FOR THEIR QUEENSLAND PROPERTY HAS BECOME TOO DIFFICULT

9

GREG: Honey, I can't talk about this because I'm now anxiety and I'm having champagne again

I can’t do anymore and it’s upsetting to even talk about it

JANET: Okay

10

VO: IT’S A SITUATION THEY COULDN’T HAVE IMAGINED WHEN THEY MET 21 YEARS AGO…AND FELL IN LOVE

11

Janet: when I saw him in his...in his leather jacket, and black pants and his black sunglasses. he walked towards me and all of a sudden, I realised that I was in love with Greg

12

VO: BUT THEN GREG’S BEHAIVOUR AND MOODS BEGAN TO CHANGE 

13

there was a time when I went to buy some coffee and forty-two years in finance. I couldn't work out the change from my cup of coffee.

Janet: And Greg's a mathematical genius.

Greg: And I come home, and I was crying, and I said to Janet, I said "there's a major problem here".

15

AT FIRST DOCTORS THOUGHT GREG WAS DEPRESSED. AND IT TOOK FOUR YEARS -  BEFORE A BRAIN SCAN CONFIMED THE DIAGNOSIS

16

GREG: And he was able to show me on the screen, there is your frontal lobes and they're getting eaten away. And go away and get your affairs in order Greg Kelly, because this is a terminal illness, with an average of 6-8 years. Sure, some might go 12 or 14, but some only go 2.

Oh by the way, it's the second highest killer in Australia… WHAT? Why doesn't people know about this?

18

Janet: It's really scary. We don't really know what's going to happen. We don't really know how quickly this disease is going to progress with Greg. And, so we don't really know what is in our - where the future will take us

Anton – the royal commission into aged care has begun in Adelaide it will probe thousands of cases of substandard care, mistreated and abuse by service providers

19

VO: A KEY ISSUE BEING REVIEWED IN THE ROYAL COMISSION INTO AGED CARE - IS STAFF TO PATIENT RATIOS. ON AVERAGE PATIENTS IN AGED CARE RECEIVE LESS THAN 3 HOURS OF CARE PER DAY…

20

and we have a pact, and that is Greg is never going to go into an aged care facility.

21

VO: YOUNGER ONSET DEMENTIA AFFECTS PEOPLE AGED 30 TO 65, AND WITH LIMITED CARE OPTIONS THEY ARE OFTEN PLACED IN NURSING HOMES FOR THE ELDERLY

22

We are not elderly. So don't put us into these homes, right? And think that everything's going to go okay. Cause we are not elderly, and if someone bloody smacks us or hits us with a pillow, the chances are we're going to get up and smack 'em harder.

23

VO: WHILE THERE ARE SOME HOMES PROVIDING EXCELLENT DEMENTIA CARE IN AUSTRALIA, THEY ARE RARE AND CAN BE COSTLY.

GREG: Alrighty, so we're heading off today which is pretty cool.

SO, THEY’RE ON THEIR WAY TO DENMARK, TO EXPERIENCE A UNIQUE ALTERNATIVE…

I'm looking forward to having a look at what they do over there with young onset dementia

VO: THEY’RE GOING TO A VILLAGE…WHERE EVERY RESIDENT HAS DEMENTIA

25

ANNETTE

I think we have a good model in Denmark for our dementia care

26

I can say we were Denmark's first dementia town

27

VO: ANNETTE IS THE DIRECTOR OF THE SVENDBORG DEMENTIA VILLAGE 

28

We have 125 residents in dementia town and it's a I, think the youngest one is 45 and the oldest one is over 100 years old.

29

VO: THE VILLAGE HAS BEEN CREATED TO GIVE RESIDENTS A NORMAL LIFE. THEY CAN LIVE INDEPENDENTLY AND CARRY ON WITH THE ACTIVITIES THEY ENJOY DOING, WITH MORE STAFF THAN RESIDENTS.

30

we have about 120 caregivers or staff members altogether and then we have 30 volunteers

33

VO: THE MAIN CORRIDOR HAS BEEN DESIGNED LIKE A MAIN STREET, WITH A VILLAGE SHOP JUST LIKE ANY CORNER STORE, WHERE RESIDENTS CAN MAKE THEIR OWN DECISIONS ABOUT THEIR DAILY NEEDS

34

J: EVERYTHING’S HERE

35

37

in normal day to day life buying things at shops and using money is quite stressful because I know that I'm losing a lot of maths capability  

38

If I was to have to move into this environment then I think that it's extremely important that we do have a shop similar to that.

40

VO: STAFF IN AUSTRALIAN AGED CARE ARE OFTEN UNDER-TRAINED AND DON’T HAVE SPECIFIC EXPERTISE IN DEMENTIA…BUT ROUGHLY 52% OF THE RESIDENTS THEY CARE FOR SUFFER FROM THE DISEASE…HERE AT THE VILLAGE, ALL OF THE STAFF AND THE 30 VOLUNTEERS ARE SPECIFICALLY TRAINED IN DEMENTIA CARE.

41

GITTE:  WOULD YOU LIKE TO TAKE  YOUR JACKET OFF?

RESIDENT #1: NO

GITTE: WOULD YOU LIKE YOUR HAIR WASHED? 

RESIDENT #1I JUST WASHED IT WHERE I CAME FROM 

GITTE: WE’LL PUT A FEW CURLERS IN THOUGH

42

VO: GITTE THE HAIRDRESSER,  ENJOYS THE CONVERSATIONS SHE HAS WITH HER USUAL CUSTOMERS EVEN IF THEY NEVER REMEMBER HER

43

IT SIMPLY GIVES LIFE QUALITY, HAPPINESS SOMETHING SOCIAL FOR EACH OTHER – IT GIVES THEM THE EVERY DAY LIFE THEY HAD HAD

G: SO THAT MEANS A LOT FOR EACH PERSON.

46

How long have you been here for?

Almost a year

47

LARS: And 37 years old when I got the message from the doctors

48

J: And so Lars how old are you now?

L: I expect to be 46 in December

J: 46 okay. 

49

J: Greg, Greg is 62 but when he was diagnosed he was 59

L: Did you work

G: Finance

J: Banking.

G: 42 years banking, Financial planner

51

JANET: I think that when we met that lovely man and he started to tell us his story, I think that that was really difficult for Greg.

52

GREG: Seeing people with dementia is, is quite, it rips my heart, I don't know the words here but it rips at my heart

GREG: I can understand how people put up their hand to actually openly come here and live here and be happy here. I don't want to end up even here. I don't want someone showering me. I don't want someone wiping my bum and all this sort of and reality, that's where dementia takes you.

53

54

LOSING INDEPENDENCE IS WHAT WORRIES GREG MOST

I’ve been here 3 years

SO HE TAKES A LOOK INSIDE THE PRIVATE LIVES OF SOME OF THE RESIDENTS WITH YOUNGER ONSET DEMENTIA  - TO GET A SENSE OF THEIR QUALITY OF LIFE

55

VO: OVE IS 59, HE GREW UP RAISING CHICKENS AND WAS A HARDWORKING HANDYMAN HIS WHOLE LIFE…AND HIS APARTMENT AT THE DEMENTIA VILLAGE REFLECTS THAT

no one can take your jug / it’s got your name on it

56

VO: 63 YEAR OLD BIRGIT WAS AN ART TEACHER, AND UNLIKE OVE’S BACHELOR PAD, HER APARTMENT IS MORE OF AN ART STUDIO

57

J: Hello

B: Come on in

J: Hi, how are you?

B: I'm fine

G: It's freezing out there

B: It is, it's very cold

J:Thank you so much for showing us your home

G: This is beautiful.

J: It's beautiful.

58

JANET: And is that your painting as well? Wow?

BIRGIT: This has just started all over, so

JANET: You're amazing, you're very talented

59

BIRGIT: And I have my mate [ELMER] here. He lives on the first floor but we don't live together. We just go and visit and do things together and travel and things like that

But you're not kept in here, like you're free to just go out

BIRGIT: This is my flat. I have the key, I can lock, I can unlock

60

BIRGIT: and these are my grandchildren, yeah, the small one and the biggest sister

61

JANET: let's say that they came to visit, would they be able to stay here with you?

BIRGIT: My grandchildren?

JANET: Yeah

BIRGIT: If they

BIRGIT: If I could fit them they could just stay here, this is my place and I decide what happens here

JANET: Yep. Your place, your rules.

62

VO: THAT’S IMPORTANT TO GREG & JANET, WHO WOULD PREFER TO STAY TOGETHER

63

if Janet his wife wants to move into the dementia town, yeah it is possible as well. That's how our law is.

64

J: I would love it if I could become a citizen of Denmark today and knock on the door and say can we have an apartment overlooking the chicken shed and just yeah, ride it out.

65

each room or each little unit reflects that person's inner self and I think that's beautiful.

66

VO: FOR OLDER RESIDENTS WHO CAN NO LONGER LIVE IN THEIR OWN APARTMENTS, THE VILLAGE HAS GROUP HOMES…AREAS WHICH LOOK MORE LIKE A VISIT TO GRANDMA’S HOUSE, THAN A VISIT TO A NURSING HOME

67

VO: ALL OF THIS IS A PART OF DENMARK’S NATIONAL DEMENTIA STRATEGY, WITH THE GOAL OF MAKING THE WHOLE COUNTRY DEMENTIA FRIENDLY…

68

VO: THEY HAVE INVESTED 63 MILLION EUROS, , INTO DEVELOPING PROGRAMS AND FACILITIES TO ENSURE THAT PEOPLE WITH DEMENTIA CAN LIVE A SAFE AND DIGNIFIED LIFE

69

dementia town in Svendborg is for everybody, it's not only for rich persons. It's for everybody it's the same rent they pay as they did before, it's not more expensive for residents but they pay rent just like you do when you live in a flat in another place and they pay for the meals. but they don't pay for care and nursing that's free. They have paid it through their tax all their working life.

82

JANET: we got married for all the right reasons and that was basically you know, we don't know what's coming up, we don't know what's ahead and we are and were you know, in love

83

WALK UPSOT: Oh that's beautiful. That's lovely. It is cold

84

BUT DEMENTIA HAS TAKEN IT’S TOLL ON GREG AND JANET’S RELATIONSHIP

AS THE DISEASE WORSENS, SO DOES THE IMPACT 

85

one of the more difficult sides of his disease is his mood swings. A bit like Jekyll and Hyde, I guess

JANET  I would say is that he's lost control. He will fire up and he will not stop, Greg has been unable to recognise how far he is moving towards an aggressive, violent person.

86

JANET So the Greg that I have known for 20 years and the Greg that I've, he's been my partner, you know, we're married. That Greg, a great percentage of that man has gone.

87

I see changes in him now every week, whereas before the changes were you know, months before I'd see another change. Now it's more frequent

88

GREG So you know, you can get very cranky you can become intolerant  it's very, very difficult and I think Janet wants me still to be the person that I was, as opposed to the person that I'm slowly turning into

91

VO: COMING UP… GREG DOESN’T WANT TO TURN INTO SOMEONE HE DOESN’T RECOGNISE

GREG: there's going to be a point where I'm going to want to just not allow it to slide past the point of no return where I have absolutely no control

95

AD BREAK

97

62 YEAR OLD GREG KELLY IS FACING THE INEVITABLE DECLINE THAT COMES WITH DEMENTIA…

HE’S COME TO DENMARK TO LEARN ABOUT ITS CUTTING EDGE CARE… BUT HIS THOUGHTS ARE FOCUSED ON HOW THIS CRUEL DISEASE IS ALREADY CHANGING HIM

98

When you've got grandkids and children saying look, I can't go there anymore and see her or see him. I can't that's not my mum or that's not my dad if it was a puppy going through that, you'd put it down.[trim] Losing control of bowels and all the rest of it, are you going to keep that puppy alive for your benefit? Or are you going to understand if that puppy says you know what? This is too difficult and I want you to remember me running around the paddock chasing the bull.

100

J: I choose to have him in whatever form that takes. I would prefer to nurse him. I would prefer to nurse him and be with him through to the end.

101

AT THIS POINT IT’S UNCLEAR HOW LONG IT WILL BE BEFORE DEMENTIA TAKES HIS INDEPENDENCE AWAY

FOR NOW, ALL GREG AND JANET CAN DO IS PUT ONE FOOT IN FRONT OF THE OTHER…AND ENJOY THE TIME THEY HAVE LEFT TOGETHER

103

if you can’t be on a motorbike then I’ve got to have something else

VO: TWICE A WEEK, RESIDENTS GET THE CHANCE TO GO FOR A BIKE RIDE INTO THE CITY

104

J: Thank you so much

G: Well that was excellent

J: Great

G: Riding a bike without riding a bike

105

I’m sure these little motors can be hotted up get a few more kilometres out of one of these so mine might be a little faster than the rest of them

106

VO: GREG APPRECIATES WHAT THE DEMENTIA VILLAGE OFFERS ITS RESIDENTS, BUT THERE ARE MOMENTS WHEN HE FEELS LIKE, NONE OF IT APPLYS TO HIM

107

I like to in some ways think that I don't have dementia but when I'm talking to them or when I try to do something, it's clear I do have dementia

108

I openly say that I doubt that there will be a cure or something to slow it down during my span with this disease, but that doesn't mean that I don't, you know pray that it will happen during my time.

109

VO:

THEN WHEN REALITY HITS, THE LOSS OF FREEDOM, BECOMES EXTREMELY CONFRONTING

110

VO: AT SVENDBORG, GPS TRACKERS ARE USED TO PRESERVE A SENSE OF INDEPENDENCE  - RESIDENT LISE HAD ONE IN HER BAG THROUGHOUT THE BIKE RIDE.

112

B: HELLO MY NAME IS BITTE

J: HELLO HOW ARE YOU

G: GREG, NICE TO MEET YOU

113

B: THIS KIND YOU PUT IN YOUR SHOE, SO WE CAN TRACK THEM WITH THIS ONE

G: THAT’S GOT A TRACKING DEVICE IN IT?

B: YES – AND THIS ONE HERE WE CAN PUT IT IN YOUR POCKET OR ON A STRING AROUND YOUR NECK OR HIDE IT

B: AND I CAN TRACK HER FOR EVERY 3 MINUTES THERE’S A NEW VIEW OF HOW FAR AWAY FROM HERE SHE IS

B: THIS ONE HERE, WHEN WE PUT IT IN HER PURSE, IT LETS HER TAKE A WALK WITHOUT US

114

J: I LOVE IT I THINK IT’S A GREAT IDEA

115

BITTE: IT GIVES US A LOT OF FREEDOM AND WE CAN BE GOOD FRIENDS ALL THE TIME BECAUSE I CAN SAY “GOOD, GO FOR A WALK, SEE YOU LATER”

JANET: I MIGHT RIGHT DOWN THE NAME OF THAT JANET: Greg likes to wander off

116

GREG: I’M STILL…I’M STILL

JANET: I KNOW…

GREG: INDEPENDENT

JANET: I KNOW HONEY, BUT…

GREG: BUT WHAT? I UNDERSTOOD WHAT YOU WERE JUST SAYING

JANET: YOU’RE QUITE CAPABLE, FINE TO STILL GO OFF ON YOUR OWN…

117

J: This is a problem that Greg and I are currently having anyway. Where he likes to go out and explore and it's very concerning so I thought that that GPS tracker system was brilliant and I have to be honest that it's something that I would feel really comfortable introducing in our life now. But I can tell that Greg would probably not agree to that idea

118

I'm starting to understand that people want to know where I am, look I'm not ready to bow down to this disease, so you know, trackers in your shoes and trackers in your clothes, great for people who regularly wander off and that sort of thing. I'm just not at that stage at this present time.

119

VO: AS THEIR TIME AT THE DEMENTIA VILLAGE COMES TO A CLOSE, GREG & JANET

HAVE DIFFERENT FEELINGS ABOUT THEIR EXPERIENCE…JANET WANTS TO STAY…

120

JANET: if I was a resident of Denmark, I don't believe that I would be as scared of the future and of my life now, if I had what we have just witnessed here in Svendborg

121

VO: GREG, ON THE OTHER HAND, IS DETERMINED TO AVOID THE KIND OF CARE A DEMENTIA VILLAGE OFFERS…

122

GREG: Seeing the facility and the way that it operates was fantastic and I think for me, it would be rather confronting to be in that facility at this stage because as we drove away from there today and I was looking in through the windows, I wouldn't like to be in there and having my family drive away from me

123

VO: GREG & JANET ARE ABOUT TO HEAD HOME TO -  WHAT WE NOW KNOW WILL BE GREG’S LAST CHRISTMAS WITH JANET AND HIS CHILDREN AND GRAND CHILDREN

BUT NOT BEFORE A MOMENT OF HOPE FROM GREG ….A THOUGHT THAT PERHAPS THIS ISN’T ALL REAL - THAT MAYBE HE STILL HAS A CHANCE OF OUTRUNNING THIS CRUEL DISEASE

124

GREG: I want to be the person in the world that the people are talking to me all around Australia as I go around towing the caravan with my wife are saying man, you're still here? It's 25 years or 30 years, yeah that's if you said to me, what exactly is the goal? That is the goal.

Dedicated to Greg “Kell” Kelly who died

February 2018

The Kelly family wishes to nominate Neuroscience Research Australia for anyone wishing to donate to dementia research www.neura.edu.au

Australia’s first dementia village is planned to open in Tasmania within the next 12 months

“If you or anyone you know is affected by the issues raised in this program, support is available”