Dying to Receive Home Care: Aged Care Wait Times Spark Renewed Outrage

By Robert Heyward

Six years after the Royal Commission into Aged Care Quality and Safety, National Seniors Australia (NSA) has slammed the ongoing crisis in home care support, describing it as a persistent “running sore” that continues to leave vulnerable older Australians waiting—sometimes dying—without the care they need.

The alarming case of an 86-year-old South Australian applying to end his life under a Voluntary Assisted Dying Scheme due to prolonged delays has reignited calls for urgent reforms. Federal Member for Mayo, Ms. Rebekha Sharkie MP, brought the case to light, highlighting the human cost of bureaucratic delays.

Home Care Crisis: Numbers Paint a Grim Picture

• 15-Month Wait for Level 4 Care: The highest level of care, meant for those with critical needs, can take more than a year to be approved.
• Surging Waitlists: Over 76,000 older Australians are currently waiting for home care, with 47,000 more people added to the waitlist since June 2023.
• Past Improvements Reversed: After briefly achieving a 1–3 month target in early 2023, wait times have worsened dramatically.

NSA Chief Executive Officer Chris Grice described the delays as “appalling” and warned that without significant investment in resources and workforce, the government’s commitment to returning to its three-month target by 2027 is unlikely to be met.

A Royal Commission’s Legacy Ignored

The Royal Commission into Aged Care, launched six years ago, identified the backlog in home care as a critical issue.

Yet, many of its findings remain unresolved:

• Delayed Approvals: As the Royal Commission heard, people often receive approvals long after their assessments. Many have died waiting for care, a scenario the Commission deemed unacceptable.
• Lack of Urgency: While the proposed Aged Care Bill 2024 aims to expand home care packages by changing means-testing rules, these changes won’t take effect until July 2025—too late for many in desperate need now.

Workforce Shortages: The Elephant in the Room

Even with additional packages, a lack of staff threatens the system’s ability to deliver care.

NSA has emphasised the need for solutions to retain experienced workers, including:

• Exemptions for Care Workers from the Age Pension Means Test: A measure that could help keep skilled older workers in the sector.
• Better Support for Aged Care Staff: Without addressing burnout and low pay, workforce challenges will persist.

A Call to Action

Mr. Grice underscored the urgency of the situation.

“To have someone apply for Voluntary Assisted Dying because they can’t wait for care is heartbreaking. This should never happen. We are grateful to this individual for sharing his story and to Ms. Sharkie for her advocacy, but more must be done to prevent such tragedies in the future.”

NSA’s Recommendations

• Enforceable Timeframes: The new Aged Care Act must include strict time limits for the approval and delivery of care.
• Immediate Action on Workforce Shortages: Fast-tracking measures like pension means-test exemptions to bolster staff numbers.
• Greater Investment: Increase funding and resources to reduce wait times and avoid further blowouts.

A Broken System That Needs Fixing Now

The home care crisis continues to undermine the dignity and quality of life of older Australians. As Grice put it, “We’ve had this conversation too many times. It’s time for action.”

For Australians like the 86-year-old South Australian and the thousands still waiting, swift reform isn’t just necessary—it’s a matter of life and death.

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Urgent Action Needed: Community is Both the Challenge and Solution for People with Dementia

Dementia Australia has issued a call for urgent action as new research released during Dementia Action Week reveals that the ongoing lack of understanding of dementia among Australians continues to fuel stigma and discrimination. The report, titled “‘People in the Community’ are the Challenge and the Solution: Towards a Dementia-Friendly Future,” highlights that while community support can be transformative, it is also the primary source of challenges faced by those living with dementia.

Key findings from the 2024 research show:

• 71% of people with a loved one living with dementia reported their loved one was patronised by others.
• 76% felt their family member or friend with dementia was treated as though they were not intelligent.
• Two in three identified people in the community as the most frequent source of discrimination.
• One in three reported that people avoided or excluded their loved one with dementia.

Additionally, other surveys by Dementia Australia show persistent misconceptions, with one in three Australians still believing that dementia is a normal part of aging—a belief that has grown slightly over the past decade. Alarmingly, 68% of respondents in both 2012 and 2024 indicated they know very little about dementia.

Bobby Redman, Chair of the Dementia Australia Advisory Committee and an individual living with dementia, expressed her frustration over the lack of progress in understanding and awareness. “It’s almost unbelievable that we still have to talk about this. Why do people treat us differently? What have we done to deserve this? All we are asking for is to be understood, respected, and supported—basic human rights,” Ms. Redman said.

She emphasised the need for communities to recognise dementia as a disability, despite its invisibility, and to provide the necessary support to reduce social isolation. “If councils, businesses, and organizations acknowledged this, we could feel less isolated and more included,” she added.

While some communities are making efforts to combat discrimination and foster inclusion, Ms. Redman stressed that much more must be done to create dementia-friendly environments across the country.

Professor Tanya Buchanan, CEO of Dementia Australia, noted that the research confirms “people in the community” are the primary source of discrimination toward those living with dementia. “The stigma surrounding a dementia diagnosis can discourage people from seeking healthcare, including early diagnosis, and it often leads to reduced social engagement, which in turn negatively affects the physical, cognitive, and emotional well-being of the individual.”

Professor Buchanan called for collective action, urging local, state, territory, and federal governments, as well as community groups, to raise awareness and understanding of dementia and take steps to make communities more inclusive.

The report serves as a stark reminder that greater education, understanding, and community-driven initiatives are essential to reducing the stigma and discrimination faced by those living with dementia.

“It is incredibly disappointing that Australians’ understanding of dementia has not shifted in a decade and profoundly concerning that more people now think dementia is a normal part of ageing than they did a decade ago. Dementia is not a normal part of ageing.

“We know that we can do better as there are great examples of dementia-friendly communities from around the country.

“And that’s why this Dementia Action Week (16-22 September) Dementia Australia is calling for urgent and sustained action by communities and governments at all levels to increase their awareness and understanding of dementia – and to become the solution.”

Head here to find out how you can join us to create a future where all people impacted by dementia are supported and welcomed in their communities, no matter where they live.

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Dementia Australia Launches Diversity Small Grant Program for Community Awareness

By Ian Rogers

Dementia Australia has announced the launch of its new Diversity Small Grant program, aimed at increasing awareness and understanding of dementia within Aboriginal, Torres Strait Islander, and culturally and linguistically diverse (CALD) communities. The program offers grants of up to $30,000 for activities that promote dementia awareness in these communities.

Applications are now open and will remain so until 11 October. Aboriginal, Torres Strait Islander, and CALD organisations are encouraged to apply for funding to develop culturally appropriate activities that help educate their communities about dementia.

Dementia rates among First Nations people are approximately 3-5 times higher than the general population, while 28% of people living with dementia in Australia were born in a non-English speaking country.

Dementia Australia CEO Professor Tanya Buchanan highlighted the importance of this program in empowering communities to raise awareness in ways that best suit their needs. “We want everyone, regardless of background, to know that Dementia Australia is here to support them,” she said.

In addition to funding, successful applicants will receive two professional dementia information sessions for their staff or committee members, and continued support from Dementia Australia.

For more information and to apply, visit here.

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New Tools to Help Spot and Combat Scams

As part of Scams Awareness Week, the NSW Government is introducing new tools to protect people from the growing threat of data breaches and scams. The initiative includes a Scam Spotting Resource and an online Data Breach Portal to help the public verify the legitimacy of breach notifications.

According to the National Anti-Scam Centre, 2023 saw a 20% increase in reported scams, resulting in 601,000 scams and $2.7 billion in losses. Minister for Customer Service and Digital Government Jihad Dib emphasised the importance of staying safe online and outlined how these new resources will help individuals better identify scams and take action when their data is compromised.

“Young people aged 18 to 24 are at greater risk of falling victim to scams, and the number of reported scams among people under 18 has nearly quadrupled since last year,” according to the Australian Institute of Criminology.

Key new tools include:

• Online Teacher’s Toolkit: Developed by ID Support NSW, this toolkit equips students in years 9 to 12 with the skills to recognize and protect themselves from scams. The toolkit features interactive activities, quizzes, videos, and case studies, along with practical tips such as regularly changing passwords and avoiding sharing personal information online.
• Data Breach Portal: This portal allows people to verify if an email from ID Support NSW notifying them of a data breach is legitimate. In 2023, ID Support NSW notified nearly 200,000 people that their personal information had been compromised.
• Personal Information Risk Assessment Tool (PIRAT): This tool helps individuals and businesses assess the security risks of storing customer data and provides a risk level based on the likelihood of cybercriminal activity. It can be used both proactively and after a data breach.

For more information or to use these tools, visit:

• Data Breach Portal
• PIRAT Risk Assessment Tool
• ID Support NSW Resources

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Aged Care Providers Urged to Address Unique Needs of Stolen Generations Survivors with Dementia

As the first generation of Stolen Generations Survivors reaches old age, many now grappling with dementia, leading experts are calling on aged care providers to better understand and accommodate their unique needs. Dr. Tiffany McComsey and Harpreet Kalsi-Smith, both from the Kinchela Boys Home Aboriginal Corporation, will highlight these concerns at the upcoming International Dementia Conference in Sydney, emphasising the importance of trauma-informed care.

With approximately 17,000 Stolen Generations Survivors aged 50 and over, many are now frail and particularly vulnerable to dementia—Aboriginal and Torres Strait Islander people are three to five times more likely to develop the condition than non-Indigenous Australians. Dr. McComsey expressed concern that many aged care facilities lack an understanding of the deep trauma these individuals have experienced, which profoundly impacts their dementia journey.

One innovative approach proposed by Dr. McComsey and Ms. Kalsi-Smith is the use of life story posters. These posters, which would be created with the input of the survivors and their trusted companions, would provide a visual and narrative overview of the person’s life, including their likes, dislikes, and strategies to de-escalate potential tensions. The posters serve as a constant reminder to care staff of the individual’s background and the trauma they have endured, helping to create a more supportive and understanding environment.

Ms. Kalsi-Smith underscored the importance of these life story posters, especially for individuals with dementia who often struggle with communication and memory. “Creating a life story is a useful way to record important information about Stolen Generations Survivors and help others understand and relate to them in a supportive way,” she said.

The Kinchela Boys Home, where many of these survivors spent their childhoods, was a site of intense cultural and psychological abuse. The boys, now referred to as “uncles,” were stripped of their identities, forced to conform to an alien culture, and suffered significant trauma. Of the 600 boys who passed through Kinchela, only 50 are alive today, with seven currently living with dementia.

Aged care providers are encouraged not only to adopt the life story poster concept but also to engage in comprehensive training about the legacy of the Stolen Generations. This includes participating in truth-telling processes and ensuring all staff are equipped with trauma-informed care practices.

Ms. Kalsi-Smith highlighted the deep fear many Stolen Generations Survivors feel about entering aged care facilities, which they often associate with the restrictive environments of their childhood. This fear is illustrated by Uncle Colin Davis, a 76-year-old Kinchela Survivor recently diagnosed with dementia, who has expressed a strong desire to avoid aged care homes altogether.

Uncle Colin’s wife, Aunty Rita Davis, voiced concerns that the available aged care options near their home on the NSW South Coast would not meet her husband’s needs. “For him, it would be like the restrictions he had growing up all over again. Once you put restrictions on him, you never know what he’ll do,” she said.

Dementia Support Australia (DSA), which has provided tailored support to 50,000 people since 2016, emphasises the importance of cultural awareness and trauma-informed care training for aged care staff. DSA Head of Professional Services Marie Alford stressed that all aged care services should understand the triggers of Behavioural and Psychological Symptoms of Dementia (BPSD) in Stolen Generations Survivors and know how to safely de-escalate them.

The upcoming International Dementia Conference, hosted by The Dementia Centre, will bring these critical issues to the forefront, as aged care providers and policymakers gather to discuss the future of dementia care in Australia. As the needs of Stolen Generations Survivors become more urgent, it is clear that a tailored, culturally sensitive approach is essential for their care and well-being.

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