'Scratching the surface': the aged care stories that go untold may be the worst

Although their father was in his eighties and living with Parkinson’s disease and dementia in an aged care home, sisters Christine Lynch and Sandra Nisi said they knew his comments about being slapped and shaken were not just the confused ramblings of someone with degenerative diseases.

They believed him. Their story, told to the aged care royal commission in Melbourne on Tuesday, was one that illustrated the difference between aged care residents who have family members advocating for them and those who don’t.

“He would ramble about, you know, ‘I have to get the bus to go to work tomorrow’ or, you know, ‘I built that building over there’, things like that,” Nisi, one of his daughters, told the commissioners. “But then amongst all that he would say, ‘That nurse slapped me’ and then he would talk about going to work and stuff like that. And then he would say someone shook him.”

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For the past fortnight the commission has examined the treatment of some of the most vulnerable people in aged care as well as the workforce tasked with caring for them. Nisi told the commission that several distressing incidents occurred at the Greenway Gardens facility in Victoria, including allegations of staff failing to notice her father had a swollen and purple toe, not taking him to the toilet, which lead to him soiling himself, and leaving him hungry because he could no longer feed himself.

Nisi had thought things might improve once her father was transferred upstairs to the dementia ward, which seemed to have more staff, but she said there staff were even more overwhelmed.

After raising their concerns with staff, to no avail, Nisi and her sister installed a hidden camera in their father’s room. The footage was played for the royal commissioners but the sisters did not want it made public. It revealed staff grabbing their father’s legs and ordering him to “stop shaking”, even though his Parkinson’s disease meant this was beyond his control. His shaking would also set off the night alarm, which she said would further irritate staff, with one of them telling him, “I’m sick of this”.

The footage also shows a staff member attempting to get their father out of bed using a lifting machine. When their father collapses, a staff member taps his face and, when he appears not to respond, puts him back to bed and walks away.

When Nisi and Lynch’s father was given a palliative care regime, they say none of the staff told them that this meant their father was dying and that they should prepare to say goodbye. A doctor wrote up a number of palliative medications to be given to relieve pain if needed.

“Sadly, however, the palliative care plan was never activated, and he was not receiving palliative care at the time of his death,” counsel assisting the commission, Paul Bolster, said. Nisi and Lynch at times needed to pause to regain their composure as they told the commissioners of how their father rapidly deteriorated in his final weeks. They said the home could not even tell them his exact time of death.

After their father died and the sisters handed the footage over to the facility on a USB stick, they claim no action was taken. Lynch said she then took it to the CEO, who confirmed he had already seen the footage. The commission heard he later emailed her to tell her she had broken the law by installing the camera.

“He was more interested in our usage of the camera than what happened,” Lynch said. The staff who were shown to grab and shake their father were not fired, the commission heard.

Bolster told the commissioners these incidents “were just the tip of the iceberg”.

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On Wednesday the royal commission heard about the pressures on staff in the aged care sector, who are commonly paid less than a checkout operator. Qualifications in the sector vary greatly, the commission heard. A worker in the home-care sector, Janice Hilton, said unregulated and untrained workers could “walk in off the street” and into caring roles.

“There are a lot of fly-by-night providers starting businesses in the sector,” she said. “There needs to be a closer look at these providers and penalties for people who break those codes or standards.”

Health Workers Union representative Lisa Alcock said staff endured being assaulted and sexually assaulted “on a weekly basis”.

“The two most critical pieces of feedback that we receive from members on a daily basis is the alarming rate of occupational violence, and that is just something you have to accept when you work in aged care,” she said. “The second is that the incredibly low rate of pay is something that you have to similarly accept. It’s hard to accept because I feel that you can’t have a high quality of care if you have workers working poor and working them into poverty essentially.”

The commission heard this was exacerbated by the demands on staff, with one registered nurse being responsible for upwards of 50 patients, including high-care dementia patients.

“We’ve heard some evidence about graduate or first-year nurses coming in and being expected to run or be in charge of facilities, some even being referred to as clinical care managers,” Bolster said.

The commission was told this was particularly concerning given the added pressures expected on the system in the coming decades.

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The Australian Bureau of Statistics predicts that by 2050 the population of people aged between one and 18 will be 7.8m and the population of those aged 65 and over will be roughly the same. At the moment there are 5.5m people aged 18 and under, compared with 3.9m for the over 65s. This demographic shift will further imperil a struggling system. The aged care workforce is ageing, the commission has heard, struggling to retain existing staff or attract graduates to the sector.

Professor James Vickers, from the University of Tasmania’s Wicking Dementia Research and Education Centre said the ageing population would also be higher-need, with dementia to overtake heart disease as the leading cause of death of Australians in about five years time. It is already the leading cause of death of women.

In order to avoid the poor care experienced by Lynch and Nisi’s father, Vickers told the commission: “We really need an emergency reaction to upskill the current health workforce working in aged care in dementia, and then we also need to make sure that we have relevant content in those health professional programs for people who will end up working with older people”.

The commission’s hearings coincided with the release of a report by Human Rights Watch titled Fading Away: How Aged Care Facilities in Australia Chemically Restrain Older People with Dementia. The report found aged care facilities routinely used drugs to control behaviour, a practice known as chemical restraint. Many of the drugs were not approved for use in people dementia and carried an increased risk of death. The report is based on interviews with family members, doctors, nurses, and advocates, and documents the use of medications as chemical restraint in 35 aged care facilities.

An author of the report, Bethany Brown, said older people, and especially those with dementia, needed care and support, not restraint, even when they became agitated. But this required having a skilled and supported staff.

“When someone’s rights are being violated the buck stops with the government to put in place a system that will prevent it from happening,” Brown said. “What we want to see is a prohibition on the use of chemical restraints in aged care and enough staff to help people and give them the support that they need. They should not be routinely given drugs for the convenience of staff. These drugs increase the risk of falls, of stroke and death, they change personalities. Their family members who often have power of attorney aren’t even being informed that these drugs are being given.”

Brown added that the Human Rights Watch report and even the royal commission were not necessarily hearing of the worst cases in aged care, because many of those abused had no one.

“We are scratching the surface,” she said. “We are seeing and hearing the experiences of the ones in aged care with loved ones checking in. And family and friends can find it hard to stand up to medical establishments, because they are fearful of repercussions for their loved one in care.”

The royal commission hearings continue from 4 November in Mudgee, NSW.

• Beyond Blue Support Service – phone 1300 224 636. The National Dementia Helpline – free call 1800 100 500. For other support services click here.