NATIONAL DEMENTIA CONFERENCE 2016

I want to acknowledge the traditional owners of the land upon which we meet and pay my respects to their elders past and present.

Thank you very much for the invitation to speak with you today.

I am grateful to be here in the presence of some of Australia’s leading experts, researchers and practitioners in dementia and dementia care.

I have to say that it has been an interesting year of change since my colleague Shayne Neumann addressed you last.

I have proudly represented the people of Tasmania in the Australian Senate since 2005.

I entered politics with an ambition to listen to what’s most important to those in my community and to fight for equal opportunity and fairness for all.

In my current role as Shadow Parliamentary Secretary for Aged Care – this is exactly what I have been working tirelessly towards with my colleague and good friend, the Shadow Minister for Ageing, Shayne Neumann.

To ensure that come election time there will be a clear cut choice between Labor and the Liberals when it comes to ageing and aged care.

I have travelled around Australia, visited some fantastic facilities, enjoyed insightful conversations, and I have seen firsthand some great advances in technology and care.

My role here today is to tell you that Labor is ready for the next election. We have worked closely with aged care providers, consumers, peak bodies and researchers - some of you are here today.

We have a listened to you and learnt from you, and we are ready to take forward our detailed and costed policies whenever that whistles blows.

I may not be able to go into great detail about what these policies look like, but what I can tell you is that Labor is unashamedly pro-ageing.

As we head into the election, we will be addressing the opportunities of an ageing population in our policies, across a number of portfolios.

We believe that ageing and aged care needs to be at the forefront of Government thinking.
We believe that our ageing population and aged care sector presents some of the greatest opportunities moving forward – and we intend to harness them.

Challenges are opportunities

The biggest challenges our ageing population and our aged care sector faces are the greatest opportunities moving forward.
Economic and social opportunities.

But before we can harness these opportunities we have to tackle the terrible truth about ageing.
Since I took on my shadow portfolio role I have become more aware of the influx of products, headlines and news stories that surround the notion of “anti-ageing”.

Wherever we go we are faced with glossy magazines, television, social media, and beauty products and beauty tips about how we can maintain our youth.

All of these things fuel our society’s obsession with ageing.

They position ageing as something to fight and avoid as if it were a curse.
But getting older is not a curse.

And it is certainly not something we can fight against or put off.

The fact is that we all want to live longer and there is only one way to do this – and that is by getting older and living longer.
We are in fact living longer.

Longevity is one of our greatest achievements of the 20th century and it will define the 21st century.

Ageing is proof of our success and ability to live longer - and is something to be celebrated.

Age-friendly Australia

The ageing of our population is a profound social shift which requires an equally profound shift in our attitudes towards getting older.

The ageing of our population is not a problem or an inconvenience - it is a historical achievement that we have strived for over centuries.

Older Australians do not want to be sent away to grow old out of sight and nor should they.

All too often, older Australians tell me that they’re made by society to feel like a burden rather than a resource.

That they feel like a burden rather than someone who has spent their life contributing to society and who still has so much more to give.

In the next 20-30 years, the population aged 65 years and over is projected to increase to 25 per cent of the population.

The truth is that the average 65 year old today is more roundly educated, wealthier and healthier than their parents were – so whilst we may be expected to continue to contribute at that age, we should definitely be encouraging and welcoming that continued contribution.

Older Australians have a vital role to play in the future of Australia.

We need to change our mindset and move towards an age-friendly Australia.

Growing old is no longer something we do in a facility away from society, it is something we do in our own homes and within the community - for everyone to see.

We need towns, cities and suburbs, with appropriate housing options, public transport, services, parks, public spaces and employment opportunities.

Communities where older people can remain active, mobile, productive and engaged.

All Australians deserve to age in a place they choose – in their own communities, in their own residences, making their own choices.

And all Australians should feel confident that the services they need to support them to live independently (and with dignity) will be there.

These are all key features Labor’s Living Longer Living Better aged care reforms.

Aged care reforms aimed at providing a nationally consistent aged care system that is fairer, sustainable and able to adapt to the dramatically changing demographics.

Dementia

We also need to move towards dementia-friendly communities.

Dementia is a very real issue for older Australians an ongoing challenge to our ageing population.

It is not a future issue, it is here and now.

By 2050 almost 1 million Australians will be living with dementia.

It is not a normal part of ageing and is deeply personal for many of us.

All of us are touched by dementia in one way or another - whether it be our loved ones, our neighbours, someone we know in the community, our friends or ourselves.

Labor understands that we cannot treat those living with dementia as simply a collection of symptoms or issues to be managed.

A Shorten Labor Government will strive to ensure that those living with dementia, their families, our communities and the aged care sector have adequately funded polices that respond to the complexity of dementia care.

An approach that looks past the symptoms of dementia and focusses on the individual.

An approach that ensures those living with dementia are treated with dignity, care and respect.

That family, friends, workers and communities are well supported, informed and appropriately skilled.

And that people living with dementia and their carers in remote, rural and regional communities do not miss out.

I was privileged to pop into Alzheimer’s Australia’s Consumer Summit at Parliament House last week.

I was so impressed to see strong advocates amongst our consumers and their carers. To see Aboriginal people from remote Western Australia. People from Darwin and regional and rural communities across the nation. They had different stories to tell, but there was a common message:

Consumers need to be involved in the development and implementation of policy.

It is essential that those with Dementia, that older Australians, and our unpaid carers, are not only consulted, but drive policy in this nation; policy concerning dementia, ageing, aged care and palliative care.

The end goal: a cure

Aged care and dementia are very real issues facing older Australians and they need a responsive approach with genuine planning and investment.

Dementia care has reached a critical point.

There are over 47 million people living with dementia globally – that’s almost twice the population of Australia.

If dementia were a nation it would have the 18th largest economy.
 
It is the second leading cause of death in Australia and the leading cause of disability in Australia.
 
Of course the end goal is a cure and late last year we welcomed the Government’s announcement of $43 million for dementia research.

We can never replace the need for research to find a cure, but while we work towards that goal, we need to reduce the risk, improve diagnosis and detection, and raise awareness to ensure that people living with dementia, their families and their carers are supported so that they can live the best life possible.

Research is essential but should not be seen as a replacement for investing in dementia care, training and community awareness.

We must keep in mind that today’s breakthrough could still take years or decades to make an impact. There are 343,000 Australians living with dementia now, who need to be well supported in order to live the quality life they deserve.

The facts and figures I just mentioned reiterate the heightened need for dementia to be at the forefront of Government thinking, and I can tell you that Labor is on board with this.

This is a global issue and Australia should be taking a leading role.

We need dementia-friendly communities

You know the challenges of dementia.

One of the biggest misconceptions about dementia is that people living with dementia live in aged care facilities. But the reality is that about 70% of people living with dementia are living in the community.

We fear what we do not know and what we do not understand, and sadly in many communities the diagnosis of dementia goes hand-in-hand with stigmas and social isolation and exclusion.

Alzheimer’s Australia has already begun to tackle this issue and I’d like to acknowledge their hard work in developing dementia-friendly communities.

I’m pleased to say that Labor is on board with the dementia-friendly community concept.

A dementia-friendly community is a place where those living with dementia and their families and their carers are understood, supported and able to actively function as part of the community.

A dementia-friendly community is well informed and educated which helps to reduce the stigmas and myths surrounding dementia.

These communities promote respect and empathy towards those living with dementia and other vulnerable members of society.

No two suburbs or towns are the same and dementia-friendly communities are not created with a one-size-fits-all approach.
The whole community is involved and they embrace those living with dementia and their families through flexible, innovative and locally appropriate improvements.

These improvements are identified by locals, including those living with dementia for the betterment of the community and are designed to enhance access, services, safety, navigation, and of course to break down myths surrounding dementia and to improve social engagement.

Personal story

The challenges of dementia are compounded for people living with dementia and their carers in regional and rural areas due to limited services, travel distances and sometimes isolation.

A paper by Alzheimers Australia NSW in 2013 called “Living with dementia in regional NSW” stipulated that older Australians in rural areas are not being supported to age in place due to the lack of availability of health and aged care services.

This is exacerbated for people with dementia, their families and their carers.

I’d like to share with you a personal story about younger on-set dementia in a rural area of Australia well before it was well-known and recognised.

I’d like to tell you about my brother in law, Albert.

He grew up and lived in the small and tight-knit town of Westbury, In Tasmania, where everyone knew everyone.
He had two children who were 2 and 5, and worked as a butcher.

In about 1977 after 7 tedious and traumatic years he was finally diagnosed with younger onset dementia.

His GP was unable to diagnose him, and after 7 long years his wife took him to see a neurologist who finally made the diagnosis. He was only 43 years old. His symptoms started when we was 36.

At the time of diagnosis Albert was given 5 years to live, but he lived for 7 more years.

Younger onset dementia has only semi-recently been given the recognition it deserves. When Albert was diagnosed in 1977 it was incredibly uncommon and unknown.

Many people think dementia is only a disease of the elderly, but there are now at least 25,100 people under the age of 65 living with younger onset dementia in Australia- some are only in their 30s and 40s.
 
It was this perception that hindered an early and timely diagnosis for my brother in law, and it was this perception that made it so hard for his family to accept the diagnosis.
 
He still looked the same and they’d never heard of younger onset dementia.

There are many barriers to the diagnosis of dementia in general practice, including time constraints, diagnostic uncertainty, denial of symptoms and stigma – these are all things my Albert and his family faced on his lengthy journey to diagnosis.
It was a long and tedious ordeal.

My brother in law’s short-term memory had left him completely and he was stuck in the past. His extremely delayed diagnosis kept all of them in the dark and caused considerable stress and angst.

The diagnosis of dementia and younger onset dementia is life changing for everyone, and adjusting to the diagnosis and the condition involves enormous challenges.

I can tell you from my experience that the impact and toll of younger onset dementia has a different impact on family, friends and the community.

It’s different because they are at a different stage of their life.

Albert had a full-time job, he was actively raising his two children, he carried the family financially and was fit and healthy.
He was your typical country guy. He was down to earth and had a heart of gold.

The behavioural changes of someone living with dementia or younger onset dementia vary but undoubtedly have an impact on those around them.

Albert lost his short term memory and reverted back to old memories.

This caused all sorts of heart ache for his wife and children.

Some people suggest that the stigma of dementia is more strongly felt in smaller and rural areas, but others suggest that rural communities are more accepting of people with dementia because everyone knows everyone.

In Albert’s case the community he had lived in his whole life embraced his condition. You could even say that he lived in an informal dementia-friendly community well before its day.

His family had lived in Westbury for a long time and were well known, so if Albert was seen wandering they would stop, have a chat and point him in the right direction.

Albert reverted back to the days when he would deliver and stack wood for customers. So whenever someone found him stacking their wood, they understood and left him be.

Caring for someone living with younger onset dementia can be extremely difficult.

Albert’s wife never imagined that one day their world as they knew it would be turned upside down and that she would be his carer, especially while their children were still dependent on them.

It was incredibly hard for her and their children, but she did her best without any formal form of support.

She went against advice to place him in an aged care facility and he lived for 7 more years at home with his wife and family.

We have obviously come a long way since the 70’s, but there is much more to do.

Albert’s case represents numerous challenges that still exist today:

• A need for better access to health professionals and specialists for those living in rural and regional areas.
• The need to better build the capacity of GP’s and health professionals to lead to an early diagnosis.
• The need for better support for the carers of people living with dementia.
• And of course, more awareness and education in the community to reduce stigmas, increase inclusion and boost support for people with dementia.
• Albert’s case also reiterates that dementia is not a normal part of ageing and the potential and capability for the dementia-friendly concept.

Liberal Government’s record on dementia

Those living with dementia, their families, their communities and the aged care sector deserve an adequately funded approach that responds to the complexity of dementia.

Whilst people living with dementia may experience the loss of their memories, changes to their personalities and a reduction in their abilities – we must remember that these are symptoms of a terrible disease of the brain.

The individual remains and they deserve to be treated with dignity and respect.

We should not treat those living with dementia as a collection of symptoms or issues to be managed.

Their families, loved ones, friends and their community need to be supported, informed and appropriately skilled.

We must continue on the reform path begun by Labor when we were in Government.

Labor’s $3.7 billion Living Longer Living Better aged care reforms are one of Labor’s great legacies.

They were the result of years of hard work and collaboration with aged care stakeholders, the Productivity Commission and thousands of older Australians.

I am not one to withhold from expressing my disappointment with the way the Abbott/Turnbull Government continued the roll out of Labor’s Living Longer Living Better aged care reforms.

I do not believe that the Abbott/Turnbull Government has taken aged care seriously, nor have they given it the attention it deserves.

I have been a vocal critic of the Abbott Government’s cuts that jeopardise efforts in awareness raising and dementia risk reduction.

Dementia remains one of the greatest challenges of our ageing population and I remain concerned about the Turnbull Government’s ability to treat dementia as national health priority.

I also remain concerned that the Government’s first move in this area was to scrap the Dementia and Severe Behaviour Supplement – with no consultation or warning.

And am even more concerned with what came next and thereon for dementia care in Australia:

• The slashing of $20 million from innovative care projects.
• Cutting $40 million from the Aged Care Workforce Fund.
• Announcement of the experimental, untested “flying squads” to deal with severe behaviours in residential aged care.
• Abandoning the life changing Younger Onset Dementia Key Workers program from June this year.
• Discarding the world’s first dementia risk reduction program, ‘Your Brain Matters’.

Concluding remarks

Ageing and aged care deserves more than a haphazard approach.
Labor Governments have been the best friends of older Australians. We built the pension. We built superannuation.

In Government Labor began the transformation of aged care to make sure all Australians could have confidence that appropriate, quality aged care services would support them.

A Shorten Labor Government will make sure older Australians are front and centre of our thinking.

Unlike the Turnbull Government, we will not back away from the challenge of dementia, which is the second leading cause of death in this nation.

Unlike the Turnbull Government, we will support those living with dementia, their carers and loved ones, whether in residential facilities or living at home.

We want to make sure all Australians have access to world-class services that help reduce the risk of dementia;

That we support those with Younger Onset Dementia;

And that we appropriately care for those with very severe behavioural issues associated with dementia.

We want an aged care system that is equipped and supported to tackle the increasingly complex needs of our ageing population.

We need a world class workforce to do this - another great challenge facing our ageing population – and a topic for another day.
I would like to acknowledge the work of my colleague, Shadow Minister for Ageing, Shayne Neumann for his dedication and leadership in this area, and for giving ageing the voice it deserves in the Shadow Cabinet.

Together we have been working to ensure that come election time there will be a clear cut choice between Labor and the Liberals when it comes to ageing and aged care.

We have a vision and we are looking forward to sharing our policies with you soon.

We believe all Australians deserve to age with dignity, support and services to ensure they can remain productive and valued members of their communities – and I can tell you that our policies are a testament to this.
           
Thank you for having me here today and for your hard work and continuing efforts.