In an address to the National Press Club in Canberra on Wednesday Dementia Australia chair Professor Graeme Samuel shared his personal experience of dementia - the anguish, bewilderment, frustration and torment experienced by his mother as she descended into the abyss of this insidious disease. 

Below is a transcript of his speech in full and the roadmap he provided for improving the quality of dementia care in Australia.

I begin today by acknowledging the traditional custodians of the land on which we gather today, and the pay my respects to Elders past, present and emerging.

I wish to acknowledge and respect their culture and the contribution they make to the life of this nation.

My father, Ralph, died suddenly 30 years ago. My brothers and I still recall that, during the weeks following his death, his shocked and devastated widow, our mother Shirley, was the rock on whom the family leant – she was the glue that held our distraught family together.

She was the person we always relied on, could always turn to. And yet barely two years later, the family matriarch began to show signs that
something was amiss. She started to become overwhelmed by matters that she had formerly taken in her stride. She began repeating herself and forgetting to complete every day tasks.

At first her four sons thought she was suffering from a broken heart – that it was her continuing despair and sense of loss over the passing of her husband of more than 40 years, compounded by the subsequent loss of her dearest friend.

Her doctors diagnosed a series of minor strokes that had caused her change in behaviour.

But ultimately, specialist psycho geriatric testing confirmed what we feared most - that she had entered the early stages of dementia, possibly suffering from Alzheimer's Disease or vascular dementia caused by the series of minor strokes, and the disease would progress inexorably so that she would increasingly need more support.

We identified and compensated for her every difficulty – inability to cope with usual tasks, accidents, getting lost and making phone calls in the middle of the night to check whether it was time to get up for breakfast.

Each morning she would call the caretaker in her apartment building because her toaster and kettle were not working - she didn’t know how to turn them on.

These were all things we were prepared for.

Perhaps what we were less prepared for were the tears of frustration, increasing isolation and reluctance to leave her apartment, difficulties in dealing with her grandchildren.

The cancellation of her driver’s licence further isolated her from her normal daily activities. Unfortunately, this is a common occurrence when someone receives a diagnosis of Alzheimer’s disease or dementia. We dealt with the frustration of her friends who had difficulty in coping with her behaviour and gradually ceased to be her companions. Sadly a lifetime of friendship did not store up enough reserves of care and compassion to help carry her through her tough journey.

We recall with sadness when she went to the annual reunion of my father’s family. These were people she had known for more than 40 years. She bravely addressed everyone as "darling" – she clearly could not remember any of their names.

We provided her with carers at home, but she rejected them - she would insist there was no need for them because there was nothing wrong with her. We debated for hours on end whether she should be transferred to an aged care home.

Was the debate about her needs, or was it about our consciences, her children? If we delayed her transfer to residential care until she was not aware of what was happening, would that have made it easier for us?

Ultimately we arranged a place in a residential aged care home. But my brother Neil will never forget Mum's words as he took her to the home for the first time - "Neil, I know what you are doing to me - there will be a death in the family, and it will be on your hands!"

Initially, I visited her rarely - I couldn't cope with the heartbreak of seeing my mother, who had contributed so much to my upbringing, diminished in such an undignified manner.

There were a few, very few, light moments. Neil would invoke the disciplinary authority of Mum’s long deceased Grandma to encourage her to eat her meals - “Shirley” - she would have been confused if he had addressed her as Mum, she had long ago ceased to recognise her sons - “if you don’t eat I will call Grandma.”

That worked a treat until one day she responded with a spark of clarity - ”What are you going to do, go out to the cemetery to speak to her?”

Mum passed away several years ago. After 15 years of confusion, bewilderment, frustration, torment and unbearable distress - she was at long last at peace. The vow my family took was to work as hard as we could to ensure that other families did not have to go through what we experienced.

To date we have not been able to fulfil that promise.

Heartbreakingly, our experience with my mother is not unusual. And all of us who have experienced a loved one succumb to this insidious disease, will be able to relate with their own invaluable insights into the things that matter in caring for people with dementia.

Let me tell you about the scourge of this disease. Dementia is one of the largest health and social challenges facing Australia and the world. It is also the least recognised or understood. As all of us working in the field know, dementia is a terminal and devastating condition that robs people of their abilities and memories. It is the second leading cause of death after heart disease and the leading cause of death of women.

It is cloaked in stigma and misunderstanding, it isolates people from their social networks, and it carries enormous social and economic consequences.
As our population ages, and as more of us survive the diseases of mid-life, more of us will experience dementia. For those of us who reach the age of 65 without having succumbed to dementia, the risk of developing it in our remaining lifespan is 17% for men and 20% for women - they live longer.

So in broad terms, one out of every five of us who have reached late middle age can expect to develop it, and so many more of us will be involved in the care of family members or other loved ones with dementia.

There are more than 100 conditions that cause dementia. The most common cause of dementia - Alzheimer’s disease - accounts for over 70% of all cases.

In 2021, there are an estimated half a million people living with dementia in Australia and around 1.6 million people involved in their care. That number is expected to triple by 2050 unless there is a medical breakthrough. More than 2,000 cases of dementia are being diagnosed each week.

But it doesn’t only affect older people – currently over 30,000 Australians under the age of 65 have younger onset dementia. The risk at the age of 65+ is 1 in 15… and over 85 it’s 1 in 4.

In economic terms, every year dementia costs the economy in excess of $6 billion in healthcare and loss of productivity.

Around 70% of people living in residential aged care have some form of moderate to severe cognitive impairment.

On these statistics, it seems inevitable that every single family in this country will at some stage experience the torment and distress of a loved one being overtaken by dementia.

These families face enormous difficulties in providing support for relatives struggling with the memory loss and behavioural changes that accompany the disease, and they themselves may require counselling and support services that recognise the difficulties of dealing with a loved one who may not always remember who they are, or who feel embarrassed and frustrated enough to distance themselves from their family. The impact on loved ones is devastating.

The continuing priorities
Those of us seeking to meet the challenges imposed by this insidious disease focus
on three continuing priorities

Research,
Dementia Friendly Communities
Quality of Care.

A. Research
Research into the cause, cure and care of dementia is vital to improving the quality of life of people with dementia, their families and carers, and to reduce the social and economic impact of dementia in the future.

But we must ensure that the investment in dementia research is not only significant, but is used effectively to impact the detection, prevention and treatment of the disease.

And importantly, we need to ensure the knowledge gained from research translates into better dementia care.

In Australia, we have been world leaders with research studies directed to early detection of Alzheimer’s disease, its progression and management, led by Professor Colin Masters in the Florey Institute and Professor Henry Brodaty at the University of NSW.

These studies, are helping researchers:
- develop techniques to improve detection of Alzheimer’s disease;
- examine the effects on family carers and how best to help them;
- develop ways to improve quality of life for people living with dementia;
- reduce behavioural and psychological symptoms of dementia; and
- perhaps of most importance, develop hypotheses about diet and lifestyle
factors that might delay the devastating impacts of this disease.

For it is becoming clear that the earlier we can identify the disease commencing, the greater the potential to take action to reduce the risk, slow its advance or even halt it in its tracks before it has done its irreversible damage.

But while researchers continue relentlessly in search of a preventative drug, the horizon of success is still a long way in the distance. You cannot imagine the deep frustration and anger at the hopes raised by the exuberant claims of promoters of potential wonder drugs, followed by despair when their tests reveal fundamental failings.

Dementia Australia is working closely with the Federal government and major philanthropists, to bring about genuine global collaboration amongst researchers and clinicians in this area, to ensure that scarce research funds are applied to their most productive uses.

We have been a driving force in developing a collaborative cohort of leading researchers, initially under the auspices of the National Institute for Dementia Research but now through its successor, the Australian Dementia Network (ADNet), funded by a combination of MRFF and philanthropic grants.

B. Dementia Friendly Communities
If we are to pride ourselves on being a caring community, we should all be committed to reducing the stigma and social isolation that attaches to a diagnosis of dementia.

We know from listening to people living with dementia that social isolation and stigma are two of the biggest challenges they face. Friends and family often stop calling because they don’t know how to engage with someone who has dementia and the person often is forced to give up work and other enjoyable activities due to the lack of understanding and discrimination by others.

A study in Australia found that 60% of those surveyed indicated that if they received a diagnosis of dementia they would feel a sense of shame and humiliation by the diagnosis. Tell me another disease that in this day and age would bring such a sense of shame.

Interestingly, the same survey showed that people often turn away from a person who has dementia - they feel uncomfortable spending time with them.

One respondent said “sometimes my social death makes me more sad than the changes to my brain and the loss of my memories. It makes me so angry. I just want to be counted as a person again”.

Another stated “I have lost almost all of my friends and the few I have I see once a year or even once every 2 years. I have one friend who I see about every 4 months”.

In the case of our mother, life long friends started withdrawing from her life due to her diagnosis and progression of her symptoms.

Our focus is to foster dementia friendly communities and organisations - creating an environment where people living with dementia are enabled to continue their lives for as long as possible in the community.

Front and centre of this is encouraging Australians and organisations such as banks, retail and government services to become dementia friendly.

In practice it can be quite simple. It means training staff in how to communicate with people with a cognitive impairment. It means encouraging people with dementia to become volunteers, to establish buddy systems that enable them to continue their social activities.

And it means community groups welcoming people with dementia and making the small adjustments needed to help them to participate in activities.

Which brings me to the staff and volunteers who are Dementia Australia. These are remarkable people who above all else exhibit tenderness and care for persons living with dementia and their loved ones.

They provide vital services across Australia to support people with dementia, their families and carers throughout the course of the illness. They conduct information sessions and practical education programs, provide professional counselling and individual support, and they increase community awareness about living with dementia. The National Dementia Helpline - 1800 100 500 - is a practical telephone information and support service that is staffed by expert advisors.

My brothers and I turned to Dementia Australia for guidance and counselling when Mum was first diagnosed. They met with us and advised and counselled us on the challenges we would face, the heartbreaks we would suffer and above all how to deal with our anguish as we saw our mother progress through the inexorable stages of dementia – confusion, bewilderment, aggression, distress, failure to recognise her own children, and finally inability to communicate or carry out the most basic bodily tasks.

C. Quality care
And then there is the seemingly never ending task of seeking access to quality dementia care.

It should not surprise you that I am a firm adherent to fundamental planks of policy being consumer choice, consumer empowerment and quality - that primarily through introducing an element of transparency in care outcomes and resultant competition into dementia care, will the quality of services improve.

Measurement and ongoing reporting processes are required to ensure accountability and continuous improvement.

This requires a fundamental shift from a compliance, minimum standards approach, to one which focuses on improving quality and providing information to consumers about quality of care - empowering them to make an informed choice so that they, in a virtual collaboration with the regulators, will weed the poor providers out of the system.

We need to establish a higher priority for dementia friendly respite care, and an expansion of home care services that enable the family carer to continue caring for the person with dementia longer in the community if that is their choice.

Dementia is a progressive disease – there can sometimes be many years of symptoms before someone requires 24 hour residential care.

In this context, we have taken dementia design and home modification programs to consumers, the residential aged care sector, undergraduate architecture schools, and to the Australian design standards committee in an effort to help care homes and family carers provide living environments that give people with dementia the best opportunities for independence and wellbeing.

Our world leading Virtual Dementia Experience is technology which virtually demonstrates the experiences of people living with dementia in their homes.

If you have seen the films Still Alice, or more recently The Father, you will recall how a rug on the floor appears to be a deep hole, how patterns on carpet, bedding, wallpaper or even clothing, are mistaken for crawling bugs or snakes, how an all white bathroom leads to confusion between a sink and the toilet - a simple coloured toilet seat can overcome this - how a broom cupboard door appears to be a door leading to a hallway.

The National Broadband Network opens up numerous possibilities, including in-home monitoring, e-counselling, and other assistive technology to support people living with dementia, their families and carers. In home security cameras connected to smart phones can provide a monitoring service to assist family carers in taking care of their loved ones 24 hours a day.

Royal Commission into Aged Care
These are our continuing long term goals. But of immediate focus is the shocking exposure in the Royal Commission into Aged Care Quality and Safety’s Final Report: Care, Dignity and Respect - of the disgraceful treatment of our aged population, particularly in residential aged care homes - please, let’s stop referring to these as facilities!

The Final Report captures the essence of the personal experiences entrusted to the Commissioners by people living with dementia, their families and carers. Their Final Report demonstrates that the Commissioners have listened.

It also provides a rare opportunity for government to make a transformational difference to the experience of people impacted by dementia. In response, knowing the need for reform was evident, Dementia Australia has developed an integrated Roadmap for Quality Dementia Care.

It is based on the views of people living with dementia, families and carers and providers and addresses the gaps and systemic failings and possible solutions outlined in the Royal Commission Report.

Quality dementia care needs to become an intrinsic, core element of aged care in Australia. A strategic priority for every provider needs to be a commitment to providing quality dementia care that is clearly demonstrated in all elements of the provider’s strategic and business plans.

What does the Roadmap propose?
Dementia Australia believes that there are three key areas of transformation that collectively would make a substantial difference to the delivery of quality dementia care for people impacted by dementia:

Dementia support pathways
Building workforce capability
Dementia-friendly design

A. Dementia support pathways proposes a single access point to services through a centralised, national telephone and online service that complements My Aged Care, the Carers Gateway and the National Disability Insurance Scheme.

An expansion of our existing National Dementia Helpline, will be able to offer the kinds of social and psychological support that people need.

We need to also ensure timely access to diagnosis and a direct and clear pathway to early and ongoing supports and treatment services.

Dementia is one of the most under-diagnosed of chronic diseases. I’ve said that perhaps one fifth of us in this room can expect to develop dementia, but if nothing changes, only 1 in 3 of those of us who develop dementia can expect to be correctly diagnosed. Without timely diagnosis, what chance do we have to access appropriate interventions and treatment?

I know that if I’m in that one in five of us who develops dementia, I’d want to be diagnosed as early as possible. I would want to have the opportunity to put an advance care plan in place for my future medical treatment, and to put other measures, such as power of attorney, in place to be well prepared for the future point where I may no longer be able to make clear, informed decisions.

I’d want to have access to the latest, evidence-based treatments, because I know that although there is currently no cure for dementia, there are interventions such as targeted medications that can help some people maintain their cognitive function for longer.

I’d also want to have good care and support in the community, so that I could keep living in my own home for as long as possible; and I’d want my family carers to also have education, support, and access to respite care to help them in their journey.

Yet the evidence shows that even for those who are diagnosed at all, the average time between first symptoms and diagnosis is just over 3 years.

As a consequence, many people with dementia and their families in Australia slip through the gaps and miss out on crucial opportunities for early intervention. This is a tragedy, and what’s more it is largely avoidable.

Thorough assessment and accurate diagnosis of dementia requires the attention and time of experienced and trained healthcare professionals.

General practice is usually the first point of contact for people concerned about their memory, as well as people with unrecognised signs who present for other health reasons.

Yet many GPs, as well as nurses and allied health professionals, have difficulty differentiating normal ageing from the early stages of dementia. They also often lack specific knowledge about dementia assessment, management or appropriate referral pathways.

As a significant step in the solution we are now working in an unprecedented collaboration with the Universities of Melbourne, NSW and Queensland together with their associated major hospitals and health care networks and ADNet, to establish across Australia, National Comprehensive Dementia Centres that will provide diagnostic, clinical and care services, together with valuable interaction with dementia researchers.

This is also a broader community issue. Many people in the community lack knowledge and understanding of dementia. This is often compounded by a general belief that memory loss is a normal part of ageing, and often a level of fear and denial that may make people reluctant to present for diagnosis.

To begin to address these gaps, we need targeted information and education on dementia, both for health professionals and for the general community.

B. Building workforce capability involves ensuring the aged care workforce has the skills and knowledge to provide quality care and support to people living with dementia.

Dementia Australia’s virtual reality education takes you into the world of a person living with dementia - it helps build empathy.

People with dementia tell us they don’t want sympathy, they want empathy and they want us to support them, to enable them – not to do everything for them – not to make assumptions that because they have dementia, they can’t do anything.

We saw this work in the early days of COVID-19. Our Communities of Practice model was put to the test – staff in groups from all over the country were sharing what they were doing to care for residents in lockdown who had restricted visiting, who had trouble understanding or recalling why there was so much change.

They shared what did and didn’t work with window visits, and how they were using devices – mobile phones, tablets – even things as simple as inviting families to send emails so staff could print them out or read them to residents. All these had a positive impact.

We can invest in and train our current aged care workers – and we absolutely should – they deserve it.

And we can provide ongoing investment to support sustainable transformation of dementia practice - that will transform the entire aged care system over time, delivering quality dementia care for decades to come.

C. Dementia-friendly design proposes developing and embedding a set of robust, evidence based and practice informed dementia friendly design standards. This will enable physical environments that support people living with dementia to be as independent as possible. The evidence shows that dementia-friendly environments lead to improved health and care outcomes.

Our approach is to incrementally upgrade existing homes to meet the needs of people living with dementia.

At the same time, we recommend a specific focus on new builds to ensure that they comply with the existing guidelines relating to dementia-friendly design which should form part of the building code requirements for any new residential aged care homes.

We are all challenged by noisy or confusing environments, bright lights or other intrusions but we can choose to move away from whatever is impeding our function.

But people living with dementia can’t always control their perception and spatial association, nor their setting. They may be not able to filter out background noises – the seemingly innocuous hum of an air conditioner may be thunderous for them.

Lighting that casts long shadows along a corridor might appear like a dark hole for a person living with dementia - they might be fearful, lash out to stop walking towards the hole to protect themselves. This might then be interpreted as violent behaviour and if it continues, potentially drugs seen as a solution. The simple solution of grid lighting overcomes this.

Crockery and cutlery that has contrasting colour handles or lines that define edges will help a person grip a cup better (avoiding hot drink spills) or better able to feed themselves.

And clear signage on doors, directional and visual signs to support people who may not speak or read English – especially when reverting back to a native language is common as symptoms progress.

Look carefully next time you visit a toilet in a public place and ask yourself if the figurine signs differentiating between male and female are potentially confusing for a person with a cognitive impairment.

All these examples are not expensive – just considered and considerate of people living with dementia. That’s the key to dementia friendly design – building with empathy and understanding.

Conclusion
Dementia is one of the major chronic diseases of this century. Our nation needs a holistic plan to tackle it over the next decade and beyond, with a focus on providing appropriate services and supports, and tackling the associated social isolation and stigma.

If our Roadmap to Quality Dementia Care is adopted and implemented, most of the activity will take place in the first three years, but changing the culture of aged care will take time.

Embedding continuous improvement processes specific to dementia, transforming the regulatory, legislative and policy environment, as well as building education and workforce pathways and communities of practice, are all important components of the sector transformation that is needed.

Every Australian impacted by dementia needs to know that support for them to remain in their home is available and appropriate. And they, and their loved ones, need to know that if they move into residential aged care, they will receive the care, dignity and respect that the final report of the Royal Commission demands.

A couple of weeks ago I watched Sir Anthony Hopkins play the role of The Father, descending into the bewildering torment of dementia. I saw again my mother’s heart-rending experiences so vividly recalled by this extraordinary film.

I had hoped that the memory of my mother’s tortuous demise might have faded after all these years. I would have expected that my involvement with Dementia Australia might have toughened, hardened me about the realities of this disease. But experiencing this wonderful film, The Father, proved to me that nothing can insulate you against the heartbreak of witnessing the impact of dementia.

My mother is at last at peace. But how can any of us be at peace whilst the causes of her demise, indeed of hundreds of thousands of others who have passed away with dementia, remain unsolved, the means of prevention and cure remain undiscovered and the care for those living with dementia is capable of improvement to provide a better quality of life.

Remember this is not only about them - it is also about what the future holds for you and me.

What do you think can be done to improve the quality of dementia care in Australia?