Bill's Speeches

TACKLING DEMENTIA: OUR GENERATION’S DUTY - SYDNEY - TUESDAY, 21 NOVEMBER 2017

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Good morning, everybody.

First of all, thank you very much, Emma.

I became informed of Grant's struggle and I asked Emma, would she come today.

It's not easy to talk about your own family.

It's a funny thing - I guess all of the experts in the room and all of the researchers and all of the people interested – sometimes it's easy to talk about the problem when it's someone else's.

Not because you don't care but because it's not quite as difficult.

So, Emma, I am very grateful for you speaking.

Indeed, what I have discovered since I have started to take a greater interest in the challenge of dementia, is how many people are either living with it, or have a family member living with it, or one degree of separation, know a family.

That's why I am here.

The reason I am speaking today is because I think the challenge of dementia is urgent, it is scary, and this country is rich and smart enough to do more than we do.

So before I get into the heart of what I am going to say, I do want to acknowledge the traditional owners of this land upon which we meet, and I pay my respects to their elders, both past and present.

I’d also like to acknowledge a few people in the audience. Phil Hazel with his assistance dog, Sarah.

I had the chance to talk to Phil, and Trevor Crosby, when I met them most recently at one of our dementia round-tables.

I would like to acknowledge:

  • Graham Samuel

  • Maree McCabe

Who are helping restructure and lead Dementia Australia.

  • Ian Hickie, who we have heard from, who just has a heart which is enormous and he wears it on his sleeve.

  • And Mathew - thank you for providing the Centenary Institute as a forum in which we can start talk more about the issues that matter.

Also I want to mention a friend of mine I went to university with, Christine Bolt, who works with Dementia Australia, and she persisted and persisted and said just come down and talk to the people at Dementia Australia, so I am grateful to her for doing that.

Last week, I was in Perth.

I met a lady named Dianne, a charming woman.

She was born in 1967, which you'd be surprised to know is the year of my birth too - she looks much younger than me!

She was born in July, I was born in May.

But she also has younger onset dementia. 

She battled with her insurer, MLC, to access her income support, for two years.

In fact, somewhat miraculously, she went on talkback radio to complain about the banks and she got a phone call that afternoon and the problem was fixed.

She wants to visit family in New Zealand - but because she has dementia she cannot get travel insurance.

I mean, she’s not asking to fly the plane.

Now, talking to her, she is a remarkable woman:

Employed seven people, ran her own marketing business, stretched every dollar, could handle all the paperwork – but she told me how, in the week leading up to our meeting, she had paid the same bill three times.

Her loving partner said: you can't do this anymore.

I wrote down her next words, she said:

“It’s so hard, it’s a loss of self and a loss of control.”

We all know that in politics, there's a lot of noise - when people turn on at least - there's a lot of words and emotion expended on a lot of side shows.

Everything is right now - and that means in the last 12 hours.

And then, we are immediately consumed by the next 'right now' - or the next tweet from President Trump.

But when I think of Dianne, the story stays with me.

And Emma's remarkable story about her father Grant, stays with me.

And all of you, who Australia is privileged to have work in dementia in some capacity or another - you know that the names and faces of these stories, the tears, the courage and the hurt, they take up quiet residence in the back of your mind. 

I have found that since I have started to explore dementia, I can't stop thinking about it.

The stories are the main game.

They are not the side-show.

It's interesting, isn't it? That when you talk to people living with dementia, or their families caring for them, some of those stories can sort of come out of the recess of memory.

They have a way of catching you unawares in the reflective moments in our busy lives.

Those moments when you look out the window of the plane - you wonder, I wonder now, how many of the houses that I see are home to an Australia living with dementia and the daily struggles that come with it.

I wonder how many Australians, under those rooves that I fly over, love someone and simply want dignity.

Dignity - it's a $20 word, isn't it? Dignity.

But to me, it means that the person feels valued.

To me, it means the person feels safe.

To me, it means a person has some control over decisions affecting their life.

And I wonder, as I fly over these rooves, how many people don’t have the dignity, don't have  the access to resources or don't have the money to pay for the services.

It makes me wonder in fact, how many people are simply forgotten.

It is possible in our nation to be forgotten.

So I believe that we who can have a responsibility to ask those questions.

People in public life have a choice, on what you choose to spend your time upon.

Empathy is a choice, sympathy, sadness, and fear – are entirely natural, entirely human, entirely reasonable and entirely understandable.

The more you see of dementia and the more you see the people affected by it, directly and indirectly, the more you cannot ignore it - you cannot walk past it.

Now, I am not saying we should get ourselves stuck in what I call the sympathy trap.

What I mean is, that we need to offer Australians living with dementia and the people who love them more than words of solace, no matter how well-intentioned.

We need to offer carers more than praise - this idea that they are secular saints and we just don't know how we do it, and then move on.

I do believe we need concrete steps - we need policy, we need national political will.

I want to suggest to you that tackling dementia is our generation’s duty.

Tackling dementia will be a defining health and aged care challenge of the next generation.

Now, there are others issues - I understand that, not least cancer.

I understand there are other health challenges.

But the more I think about dementia, the more it has taken residence as a challenge we cannot walk passed.

It is a challenge that demands the full reach of our resources and the full extent of our capacities: government, industry, health care providers, families and carers - together.

Australia has a very proud tradition of building for the best.

The world’s best social wage - the five pillars as I call them: superannuation, a proper minimum wage, Medicare, a decent pension, and the NDIS.

But - if given the privilege to serve as Prime Minister - my ambition is to add to these five pillars.

It is for Australia to lead the world, in collaboration with the world, but for Australia to lead the world, in finding a cure.

And to make Australia, until we find a cure, the best at care.

To make Australia a world leader in the way we care for people living with dementia, and the people who love them.

Undoubtedly, it will be expensive.

And – just as the Productivity Commission did with the NDIS, or Labor’s Living Longer, Living Better package for aged care – calculating the cost is an important and necessary step.

Because I believe that when we calculate the cost of what we need to do, we will actually prove that it is not a bottomless pit.

It’s not an insoluble cost.

I do not believe dementia, and by extent, both younger onset dementia and aged care, I do not believe that the solution to that is like tossing a coin in a well and never hearing it hit the bottom.

I do not believe it is a bottomless well of costs.

I believe it is an issue which we can fund.

And whatever the figure, every single expert will tell you that no cost we identify is greater than the cost of doing nothing.

It is a false argument to say that both the cure and the care for dementia is too expensive.

Because there is an alternative: it's business as usual.

That is too expensive.

A recent NATSEM report estimated that dementia costs Australia over $14 billion a year.

The same report found that even a 5 per cent reduction in the number of people with dementia over the age of 65 could lead to savings of $120.4 billion in less than the next 40 years.

If we hold to our present course, if things stay as they are:

  • More than 500,000 Australians will have dementia by 2025.

  • More than 1 million of us by 2050

One in three Australians born today will eventually be diagnosed with dementia.

Or, put it another way: by the time the sun rose this morning to the time that the sun rises tomorrow, 244 Australians will join the population with dementia.

Already, this year, for the first time, dementia is now the leading cause of death for Australian women.

Within the next five years it will be the leading cause of death for all Australians.

No one can be guaranteed they won't be affected by dementia, therefore it is everyone's problem. Everyone’s challenge.

What I do, as Leader of the Opposition, is I travel and do town hall meetings.

Hundreds of people are invited, some are supporters, some are not.

Some are curious to see what the fuss is, maybe some of them thought there was something else on at the hall.

One thing I have started to do in the last few months, is ask them a question, and I say, "how many people in this room" - there's normally 200 or 300 people - "how many people have a family member with dementia, or know a family who has someone with dementia?"

Seventy percent of hands go up. This is an iceberg issue - not to the people in this room, who make it their business to be informed and interested - but this is massive.

This is seriously massive.

And unless we decide to do something about it, massive gets even bigger and harder.

Yet having said it is this widespread, the effects, the ripples, dementia remains poorly understood.

I think it still carries a sort of hurtful, harmful stigma - perhaps you could call it a failure of imagination as much as a failure of compassion.

Professor Michael Woodward has stated that we should think about the ‘three domains’ of dementia:

  1. A loss of memory and cognitive capacity.
  2. Changes in behaviour and mood –  everything from sadness to rage.

  3. A loss of function – forgetting what clothes to wear, or how to use the microwave or the lawnmower.

 

I think it is easy for us to be frightened about the consequences, if we think about it briefly. I think, though, it is harder for us to understand what it’s like to live with these domains.

About two months ago I took part in what they call, in the usual non-Shakespearean language, the Educative Dementia Immersive Experience - but it was developed by Dementia Australia and videogame software producers.

I was shocked. I was simply shocked.

What you do, is you put on a virtual reality headset – it’s the 3D goggles which no politician should ever be filmed in. But what the experience is, is you are someone living with dementia, and you have to get out of your bed at night time and go to the bathroom.

But as you learn, the striped wallpaper and the patterned carpet can look like seething columns of bugs.

The room is full of sinister shadows, the door handle, if you can find it, isn't working.

Your partner, no doubt for decades, is in the bed frustrated, telling you where to go to go to the toilet.

You hear the shouted directions, which don't all fully comprehend.

You can hear your own breathing.

You imagine there are things in the dark corners of the hallway, but yet you bang into the objects that are there and you didn't see.

And you think that you’ve finally made it to the toilet – it turns out you’ve urinated in the washing basket in the corner of the room.

Without a doubt, it was for three and a half minutes, some of the most shocking, dystopian, experience that I could not have imagined.But it puts me in the shoes of someone living in dementia.

So what I did is, I asked my whole Shadow Cabinet to do the same immersive experience.

And then I asked my Caucus, the Parliamentary Labor Party, to go through the same experience.

Once you have seen these bleak minutes, you know that you can't let people you love go through this experience on their own.

So today, I want to lay out some early markers, preliminary markers, and I'm conscious that I'm presenting to a room full of experts, but early markers for where some national policy has to go, some questions I believe need to be answered.

The first fundamental question is about the shape of our health system.

Medicare looks after Australians very well – and it has done so ever since Labor created it.

But I do think that our next generation of Medicare needs to evolve to meet two big challenges:

  1. Preventing and managing chronic diseases.
  2. Supporting the growing population of Australians living with dementia.

 

We talk a lot about the very real overlap between the Commonwealth and the States – but for the overlap there seems to be an awful lot of fragmentation, between levels of government, and between health care and aged care.

Something as boring, basic and bland, yet remarkably elusive, as better co-ordination between jurisdictions and better communication between providers, would make a profound difference in the efficiency, the cost and the quality of care.

And we must pair this with a new, redoubled focus on the research to find a cure for dementia, with more resources and more funding dollars directed to this endeavour.

Now, I know  that our hosts today, the Centenary Institute, are leading a massive research effort into tackling inflammation in the brain, which is a key area for future work.

My vision, put simply, is for older Australians not to be invisible in public policy. Not to be forgotten. Not to be put in the too hard, too expensive, too difficult column.

Or put more positively, what is wrong with the dream of a century of life full of meaning and quality?

My other vision is for Australian scientists, Australian universities.

Australian research centres and the Australian Government to help discover and develop a cure.

But until there is a cure, there must be care.  

This means better standards and training for residential facilities and in-home care.

It's estimated that 70 per cent of people in residential aged care have dementia, so everything we do in aged care policy has to link-up with dementia policy.

Reports about elder abuse, or sub-standard aged care facilities rarely lead the TV news – but I think we would all agree, that the stories that do emerge are the tip of the iceberg, and serious enough to warrant far greater attention.I think there are three priority areas for improving aged care in our nation:

 

  1. More comfortable and more suitable facilities
  2. Better-trained and better-supported staff

  3. A change in the attitudes of the Australian community, both to caring work and to older Australians as a whole.

 

I should make it very clear, I think a lot of this is, as Emma said, within our grasp.

I think we have the resources and the capacity – we just need to be better at utilising it.

This word, leadership, gets bandied around a great deal.

To me, in this topic, in this field of endeavour, in this generational duty, leadership is saying to the nation, this is where we are going.

Leadership is spelling out not just for the next 12 hour media cycle, or the next poll, or the next election.

There is a hunger in Australia more generally for leadership. Leadership is saying where we want to be in 20 years, and 30 years.

We have the technology, and the capacity to incorporate into building standards, dementia friendly environments where cognitive decline is supported, and people with dementia are more involved in their community and less medicated. 

There is remarkable expertise in Australia.

I think of Professor Richard Fleming from the University of Wollongong, citing the research done by one of his engineering PhD students into air conditioning and its effect on people with dementia. 

It found a huge correlation between temperature and agitation. 

Now that might sound simple, obvious, even trivial. But people with dementia, as many of you know, are hanging on, day by day.

And sudden change, unexpected discomfort, can be hugely upsetting because it takes some of the cognitive function to address it.

Our job is not to make the lives of people with dementia harder. It is to make it easier.

It is not cheating, it is not a short-cut to engineer problems out of the design.

Now, a second priority has to be staff training and better support for staff.

There are great teachers out there, there's some really good training available.

There are tens of thousands of wonderful nurses and carers doing outstanding work.   

But if you're working alongside colleagues with little or no experience, people who would like to help but can’t - it is a challenge.

And let me also spell out very clearly – aged care workers are underpaid.

We rely also upon aged care workers to work with culturally and linguistically different patients, and that doesn't help.

Our caring workforce is excellent, and they can even do better, and there can be fulfilling careers - but we can't do it on the cheap.

If you put overworked staff and undertrained staff into situations where the challenges are greater than they've been trained to do, you will guarantee problems, and they are avoidable and preventable problems.

It staggers me that there is no training standard required in aged care for helping people with cognitive impairment or dementia, despite the fact that it affects seven out of every ten residents.

And when you - and any of us can understand this - when you feel out of your depth, or overwhelmed, or insufficiently staffed on the backshifts, where there aren't the access to immediate advice, that is when, more often than not, performance will suffer. When things get missed.

Professor Stephen Gibson from NARI has shown that people in aged care with dementia are less likely to be given pain relief than those without.

Again, like temperature, inadequate pain relief can push you over the edge.

I can't help but think about the contrast with child care.

As parents, when we put out children in their first experiences outside the family home, we demand the highest standard of  child care, you check and scrutinise every spare moment.

We are onto negligence in a flash, we have zero tolerance for neglect.

But I don't think that we can say the same for aged care. I don’t mean the immediate family members, but on my journey into understanding dementia, the number of family members who feel overwhelmed because they feel they effectively have to be the facility bully, just to get the minimum attention for the person they love.

And they don't judge the staff harshly, but it is just a current formula which isn't delivering to the extent of quality that it should be.

Now this brings me to my third priority of the three priorities in aged care – community attitudes.

I think that Australians are decent, generous, caring and compassionate. I for one never cease to be proud of when you see those scratchy YouTube videos where you get some bully on a bus, vilifying another passenger, and the rest of the passengers, more often than not, speak up for the victim. 

We are kind in someone else's trouble and stoic in our own, as a general rule.

But it is not always universally applicable - our generosity.

We should not put asterisks or qualifiers on the sort of Australians that we like to see in the mirror.

We can’t say that our ethos is of the fair go, the land of the fair go, apart from people with dementia.

We can’t say that modern Australia is the home of equality, except if you’re difficult to manage, or hard to care for. 

People living with dementia are our sisters and our brothers, they are our parents and they are our partners.

They are people who've raised families, run businesses, paid taxes, they've upheld the laws, they've served our nation in war and our communities in peace.

People with dementia, they can be any of us, they will be one in three of us.  

They deserve our respect and our support as valued and loved members of our Australian family.

We cannot afford to see some Australians as too hard, too difficult, too inconvenient, too dispensable.

I think the rest of us can do a little bit more to walk in their shoes.

I’d like to see more business and corporate leaders – indeed more political leaders – spend some time behind the scenes in aged care facilities.

I think it would be a good thing also if more of our corporate leaders and CEOs learned to appreciate the cost and value of emotional labour.

The phenomenon which means that our caring workforce not only have to use their intellect and physical strength, they have to be emotionally 'on' and 'up' all the time because you have vulnerable people taking cues from the staff.

I also think that if more employers and leaders understanding more about dementia, there would be better arrangements for middle-aged workers caring for elderly parents at home.

I know that when I was at secondary school, we had a program to go and visit older people - it opened my eyes.

So many of our fellow Australians live lonely lives.

I think it would be good if we encouraged our schools to encourage kids just to spend a little more time with those who are older.

I think with this shared experience, and not changing 100 per cent of what you do, changing 1 or 2 per cent - I think we would see dividends.

I understand that people are time-poor. 

I am not asking Australians to change what they do 365 days of the year - but maybe 3.5 and 4 days of the year, they could do that extra 1 per cent, and I think the results would be remarkable.

Of course, having said all that about residential care, there are many  Australians living with dementia who – with the right support – can and should receive all the care they need at home.  

I spoke to Joan, 3 or 4 months ago, in Melbourne.

She cared for her husband Reynolds in their home for the last ten years of their life.

Reynolds had a home care package - it meant that as his needs increased in the last six months, a carer was able to come to their house twice a day to help with showering and his general health. 

You and I know that help may not be exorbitant but very useful, it makes a wonderful difference towards the quality of that relationship.

It meant Reynolds could spend his final years at home with his wife of 65 years, and she could spend that time with him.

It’s peace of mind, it’s a bit of rest, it's physical well-being - it's the continuing comfort of familiar surrounds. 

But right now in Australia, this rich and powerful country, we have almost 90,000 Australians on the waiting list for these kind of packages which make such a material improvement to the quality and dignity of life. 

And of these 90,000 packages, 66,000 are for the higher need care, category 3 and 4.

And these are only accounts for those who've been assessed as eligible. How did we get to have a 90,000-person waiting list? 

And let's not pretend that not paying these packages is saving the taxpayer money. It means that there's more trips to the doctor, it means more trips to the hospital, more hospital time being used, the beds which could be used for other purposes. 

It is a false economy to maintain long waiting lists for aged care. And of course, as we know even more seriously, the waiting list halves the potential recipient with poorer health outcomes.

Do you know, it's interesting, when I worked on the National Disability Insurance Scheme when I was a junior Minister, and I looked around, what we could do for people with profound and severe disabilities? 

The aged care assessment team was a model, but something unusual has happened in the last decade. 

We've jumped ahead in terms of - with all of the challenges of the NDIS, it is now more resourced than aged care. How on earth? But that's because we now need to revisit through the prism of dementia how we are handling the system. 

We need to raise the standards and availability of home care, as a matter of urgency, and we use the word 'urgency'. It is urgent.

Seven out of ten Australians with dementia are cared for by their families – and it is important, I think, to understand that it takes time for deterioration to occur, people don’t lose all their capacities the day after diagnosis.

And a recent study in Finland shows that factors like good diet, brain-training and social activities, play a role in slowing cognitive decline and the progress of dementia.

My good friends Patricia and Don Edgar, who have written so well about ageing, said to me there are three ‘touch points’ where people with dementia and their carers need different types of support.

The first, and in some ways this is perhaps one of the most challenging, is when a person has an inkling that something is wrong – but they’re not sure. Late diagnosis of dementia does not help the person living with dementia.

So what we need to look at is better education and awareness at this stage. The screening. What do we do, what can we do to be better at picking up the signs earlier?

The second of course goes directly to diagnosis. Fragmentation means, in our health system, means too long a delay between seeing a GP and visiting a specialist and too long in getting that diagnosis.

And there are simple things we could do to help improve the capacity of our diagnosis. 

And thirdly, along the caring journey, we need more chances for respite. And I want to put forward amongst that – better workplace flexibility for people in their 40s and 50s caring for a person with dementia.

Now I've focused a fair bit on the early stages of dementia, but I want you to know I understand dementia is a progressive and life limiting disease - the variation in the stages is profound. 

I know there is a lot more for me to learn about the complexities and stages of dementia, and I will be working toward meeting more people living with dementia across all stages of the disease, their families, their carers.

Can I be really blunt with you, in conclusion? I don’t imagine having the world’s best policy on dementia will win Labor the next election. I think it should, but I am not here because I think this is a political opportunity. 

I am here because when you're Opposition Leader, as I've learned, you can't pick every issue, you can't fight every fight, as much as you may want to. 

But I know that there's a position of leadership, and I have an unusual opportunity to speak up, and sometimes you see a problem that is so significant, you cannot walk past the challenge. 

I want to say to you that for those of you who are cynical about politics, those who lack trust in the power of government to do good. 

I see dementia, policies, comprehending both cure and care, I see it as a chance to renew the faith of people in the political system. 

See the challenge is for carers, for family members - I've met them, they are the girls in their 20s who are caring for their mothers, who are now divorced and got the early onset dementia in their 50s, and they are bone tired. They are weary of shuffling between study and work and care, and the runaround, and the six different departments, and of course just making sure that the overworked, undertrained staff and facilities are keeping a watchful eye. And the sudden mood swings - it is difficult. 

We have a capacity in this country to help all. 

I think that being in government is not just a matter of day to day pragmatism, I think it is not just a matter of fending off the next crisis, the next eligibility issue, the next this or that. 

I actually think that government is more about being the bare minimum, it's more about doing the bare minimum that passes muster and hoping something good will turn up.

I actually think there's only one question that matters in politics regardless of one's affiliations. 

Do we leave this place better than we found it?

Are we handing on a better deal than the one we've inherited?

Now I think we need to craft policies for a generation, not an election.

I believe that if we tackle dementia, I believe that is not just a policy for social justice, I believe it's a core value of the Labor Party, it is a core part of offering an economic and social program for the betterment of the nation. 

What could possibly be more important than tackling a disease which will affect one in three born now?

What could be more important than tackling a disease which is now the principal cause of death amongst women?

What could be more important than tackling a disease of which 244 people, of our fellow Australians, become people living with dementia daily?

We will put forward more detail as we go, we will do more work and we will do more listening, most importantly. But the heart of the proposition which I've sort to advance to you today, people interested in the field is: you are not on your own.

And I want to say to the people living with dementia and their carers, they are not on their own. 

This is an issue that affects every one of us, every one of us. And the heart of our proposition is it is a generational duty to actually tackle it now, urgently.

Not only should we aim to lead to find a cure, but we should aim to lead in finding a care.

I am more than confident that if this nation sets its mind to this task, nothing can stop us.

Thank you very much. 


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