Speech by Senator the Hon Mitch Fifield

30th International Conference of Alzheimer’s Disease

Location: Perth Convention and Exhibition Centre, Perth

Thank you Glenn for that introduction.

It’s great to see Glenn here in his new role as Alzheimer’s Disease International Chairman elect, following his many achievements during his years as CEO of Alzheimer’s Australia.

And it’s an absolute pleasure to be here today to officially open the 30th Alzheimer’s Disease International Conference.

I feel honoured to join with an international community dedicated to the support of people with dementia and their families.

Within that community I would like to specifically acknowledge:

  • ADI Chairman Dr Jacob Roy
  • Executive Director Mark Wortmann
  • ADI Board Members in attendance
  • Alzheimer’s Australia President Graeme Samuel
  • AA CEO Carol Bennett
  • AA Board members present

Importantly I also want to acknowledge those of you here today who are living with dementia or caring for a loved one.

Events such as this, the ongoing advocacy of ADI and Alzheimer’s Australia and the lived experience of those impacted are bringing dementia to the attention of the broader community.

The community is starting to engage in a conversation about dementia.

Recent films such as Still Alice about younger onset dementia are reaching those who wouldn’t normally think about such issues.

And we need that to occur for we know that dementia remains one of the biggest global public health challenges confronting society – both in terms of finding a cure and supporting those who have been diagnosed, and their loved ones, to live their lives to the fullest.

Today I want to outline to you what the Australian Government is doing to achieve that outcome.

There are many aspects of Australia’s response to the challenge of which we are justifiably proud.

Perhaps none more so than Australia being one of the first countries in the world to recognise dementia as a national health priority.

In fact Glenn Rees as then CEO of Alzheimer’s Australia led that charge.

It was an important decision because it made dementia a focus and target to achieve significant and cost-effective advances to improve the health status of Australians.

Last year Government furthered its commitment to improved health outcomes by boosting dementia research with an allocation of $200 million over five years.

This initiative builds on Australia’s proud history of dementia research.

A history recently acknowledged by leading UK researcher Professor John Hardy who wrote:

The modern era of dementia research began with the Australian/German collaboration identifying the amyloid protein and gene as the key and initiating component.

Australian researchers are world leaders in neuroscience, clinical research and population health studies.

This Government’s commitment to research should keep them leading the way.

As part of the research initiative a National Institute for Dementia Research is being established.

It will prioritise and co-ordinate research in Australia and support international collaboration.

The Institute will have a focus on translating research into practice quickly and effectively.

This is critical to ensure that people with dementia now benefit from the advances and skills as they are discovered.

In addition the priorities for dementia research are being informed by the perspective and experience of those who live with dementia and those who care for them.

A recent national survey undertaken by the National Health and Medical Research Council in conjunction with Alzheimer’s Australia highlighted that for people with dementia the research priority is timely, accurate and supported diagnosis.

That reflects a basic human desire to understand what is happening to you and then be able to move on and address it.

This priority contrasted, but complemented, those of professional care providers, researchers and medical practitioners whose priority is to identify ways to reduce the risk and prevent the incidence of dementia.

While our personal carers want effective interventions developed to support their capacity to care.

The delivery of effective quality care for people with dementia and their carers is firmly within my portfolio. 4

Making sure that this care is evidence and research based is important.

While we seek to understand and cure dementia there are 340,000 Australians living with dementia and an estimated 1.2 million people involved in caring for them.

Having dementia is one of the main reasons for older people moving in to residential aged care or seeking assistance to help them remain living in their own homes.

More than half of the 180,000 people in residential care at any one time will have a diagnosis of dementia making it core business for all service providers.

Ongoing funding for both residential and home care recognises that it can cost more to deliver services to people with dementia.

The Aged Care Funding Instrument for residential care provides increased resources where the needs and demands for a person with dementia require additional resources.

Home Care packages at all levels are able to access a supplement to support delivery to people with dementia.

Many of you would probably be aware that there was also a supplement to support people with severe behaviours in residential aged care.

It was my very difficult decision to have to cease this supplement.

Not because the support wasn’t needed but because its design was flawed and it wasn’t effective in targeting support for those it was designed to support.

The previous government estimated that 2,000 people in residential care would trigger eligibility for providers to receive a supplement for people exhibiting the most severe behaviours.

The most recently available figures show that providers had applied for 29,000 people to trigger payments.

The budget of the previous government for this last financial year was $11.7 million.

Instead, it came in at more than $110 million. 5

According to projections from the Department of Social Services, if claiming patterns had continued, the Supplement would have cost $780 million over four years rather than the $52 million budgeted.

And over ten years, $1.5 billion.

I examined options, but in the end decided in its current form the supplement could not be salvaged.

It was not a problem of the government’s making, but it fell to us to address the situation.

The supplement was only in place for a year.

The Supplement was only ever intended to provide additional resources for providers who give care to people with the most severe behavioural and psychological symptoms of dementia.

This decision was taken in the knowledge that the supplement was not the prime funding mechanism to support people with dementia.

But it was always my intention to replace the supplement with a funding mechanism that targeted and appropriately supported those people in residential aged care who exhibit the most severe behaviours.

To assist with this task I established the Ministerial Dementia Forum.

The Forum brought together more than 60 key stakeholders and experts

to advise the Government on how to encourage better practice dementia

care and how to best support people who exhibit severe behaviours.

The Forum met in September last year and subsequently provided advice to me.

In response to the recommendations of the forum, I recently announced expanded support for aged care residents experiencing severe symptoms of dementia.

The Government will invest $54.5 million over four years to establish Severe Behaviour Response Teams. 6

Severe Behaviour Response Teams will be a mobile workforce of clinical experts who will provide timely and expert advice to residential aged care providers that request assistance with addressing the needs of people with the most severe symptoms of dementia.

These teams of aged care experts will visit residents exhibiting extreme behaviours, assess the cause and advise care staff on how to best care for the resident.

Alzheimer’s Australia along with other stakeholders welcomed this initiative and my Department is now working with the sector to successfully implement this targeted model of support.

There are a range of other support programmes for people with dementia.

The Australian Government invests $121 million to improve the care and support provided.

These programmes include support for risk reduction, early intervention and awareness raising.

Support services for family and carers are available through the National Dementia Helpline.

We are trialling innovative supports.

It was my pleasure to launch dementia dogs earlier in the week.

A trial by Hammondcare to provide assistance dogs to people with dementia living in their own homes.

As for all of us dogs, and pets generally, ease anxiety and are good for our wellbeing.

The funding also supports a range of workforce initiatives. Important because we know that quality services aren’t provided unless the workforce is educated and equipped to support people with dementia.

Quality services aren’t provided unless the workforce are educated and equipped to support people with dementia. 7

Workforce capacity building is supported through the Dementia Training Study Centres and Dementia Care Essentials programmes.

The workforce is also supported through the Dementia Behaviour Management Advisory Services which provide clinical interventions to assist aged care workers, health professionals and family carers improve their care of people with dementia experiencing Behavioural and Psychological Symptoms of Dementia.

These programmes combine to provide a holistic approach to dementia care across Australia.

The Ministerial Dementia Forum also considered these programmes and recommended that they be analysed to ensure the investment achieves the best outcomes for people with dementia and their carers.

The analysis includes a broad consultation process and I’m looking forward to seeing its results.

As you can tell I found the Ministerial Dementia Forum very useful

mechanism for policy development for our Government.

I have given a very broad overview of Australia’s response to the care and cure of dementia – two of the key elements of your conference programme.

And I have highlighted my interest in, and commitment to, understanding the dementia experience and having that inform Government policy development.

It’s important within that to look at the needs of people with younger onset dementia.

While many of the issues they face are the same as older people they also have some unique challenges.

People with younger onset dementia will be supported by, and eligible to be National Disability Insurance Scheme participants. 8

The Younger Onset Dementia Key Worker Programme was identified as one of the programmes to transition to the NDIS due to the individualised support it provides to people with younger onset Dementia, their carers and families.

I’m aware that Alzheimer’s Australia has raised issues about this transition.

I have instructed the Department of Social Services to work through these issues with Alzheimer’s Australia.

The National Disability Insurance Scheme is about providing choice and control to participants and the trial sites are continuing to provide valuable information as the transition to full scheme progresses.

My absolute priority is the quality of support provided to those individuals receiving services and support now and making the system work well for those who will need it in the future.

I look forward to continuing to work collaboratively with Alzheimer’s Australia, and all relevant stakeholders, to achieve this.

This is only one area in which I am seeking to work with stakeholders.

I see that there are further opportunities for aged care reform as ageing is redefined by the changing nature of the individuals accessing it.

The NDIS is leading the way in putting more power and control in the hands of the individual.

Industry leaders, such as Glenn Rees as Chief Executive of Alzheimer’s Australia, has long advocated the need for this approach in aged care. I think its time has come.

Home care packages are progressively moving to consumer directed delivery.

The intent is to give consumers more control,

– through identifying how much money they are entitled to; and

– how those dollars are spent

However, unlike the NDIS, government funding still goes to the provider.

Ultimately public and private dollars need to follow the person rather than the provider.

The easiest place to start this is in packaged care.

The next logical step is to give the consumer full control of their package and let them direct how and with whom it is spent to meet their assessed needs.

Why not let the packages we currently have – and the 80,000 new ones coming on line over the next ten years – operate this way and move a step closer to a consumer led market.

Consumer led service delivery also needs to be looked at in a residential care context.

Aged care is a system with a set number of places offered in defined geographic areas.

The changing geographic distribution of older people; and the challenge of planning for it mean it’s time to rethink the model.

Within the existing taxpayer envelope, we need to open up supply to allow residential providers to make business decisions, based on market intelligence, about where to build a residential care service.

And then allow them to attract customers through price and service. Including specialising in supporting people with particular needs – including people with dementia.

Not all areas of Australia can deliver this form of market-based aged care.

We will always need to manage these areas differently but where the market can work it should be allowed to.

For these changes to work we need informed consumers and carers.

The My Aged Care Gateway is providing a new level of information and transparency about aged care services.

We know consumers and carers are using the information to compare services and make decisions.

Their decisions are starting to effect market behaviour.

Residential care accommodation prices are starting to reflect other accommodation prices in the locale – as indeed it should, given it is an accommodation purchase.

My Aged Care needs to become the virtual market place where consumers, carers and providers – or demand and supply – meet.

A Trip Adviser for aged care services.

This is why I have charged the Department to expand My Aged Care to list all aged care services whether or not they are government funded.

Implemented in stages as the IT is developed we will start to see other services listed from 1 July next year.

Another key element to making the shift to a consumer led market is having a modern market quality assurance system

Traditionally when governments and sectors talk about quality they are really talking about safety.

Safety is critical but it isn’t the only – or even the most important – way to define and measure quality.

A more sophisticated definition of quality should be meeting or exceeding your customer’s expectations.

Ultimately the customer’s definition of what is quality is the only one that really matters.

I know this is key for people with dementia and their carers as Carol Bennett and I recently discussed.

‘Trip Advisor’ style capacities on My Aged Care will develop ratings for the quality of providers and their services, according to what matters to consumers; rather than what Departments and providers think they should be. 11

And we should embrace this development while ensuring that safety is a given.

I hope today I have given you a sense of the current response to dementia and some idea of the future.

There will always be implementation issues and challenges to address along the way.

These can be addressed where Governments and industry work together with a focus on meeting the needs of the individuals we are all here to serve – the person living with dementia and their carers.

We will continue to do this within Australia and as a contributor to international efforts, including the World Health Organisation’s Global Action Against Dementia (GAAD).

I want to close in the same way I started – by acknowledging the work of all of you in tackling dementia.

Whether your speciality is on providing care or finding a cure or sharing your experiences to make sure that policy and service delivery is the best it can be.

I trust that the conference will support and inspire you in your work.

Thank you for having me here today.