“Before entering an aged-care facility, Terance could use the toilet by himself, talk to family, and walk without assistance. Two months later, he was unable to do any of those things.”
Terance’s story of decline is one of several heard by the Royal Commission into Aged Care. That this could occur to Terance, and other older people, doesn’t just highlight the problems with the aged care sector — it also asks us to think about how society responds to ageing.
Living a retirement characterised by plenty of travel appeals to many of us. Terance had that dream, too. After a long working life, he retired to travel around Australia with his wife, Lillian. But not even a year later, he was diagnosed with Alzheimer’s disease. That didn’t stop them; Terance and Lillian travelled as much as possible before his condition deteriorated. Then Lillian became his carer, with full responsibility and limited support for her role.
To address her own needs for a short period of time, Lillian looked into residential respite care for Terance. An aged-care assessment team recorded that Terance was mobile and continent, although dependent on Lillian for activities of daily living due to cognitive decline. He was deemed eligible for high-level respite care. Lillian felt she could take comfort knowing that Terance would be cared for by a professional team in her absence.
Two months later, when she removed him from aged care, Terance was not the same. What happened to him?
Staff say Terance was “unsettled” and agitated. Risperidone — a medication with serious side-effects, such as drowsiness and a higher risk of falls — was administered without Lillian’s consent. Had they asked her, she would have told staff that risperidone didn’t sit well with her husband. The medication was increased as he continued to be “unsettled”.
Terance was also physically restrained with a lap or pelvic belt without consent for periods of time. When the aged-care staff finally sought Lillian’s consent, it was given for restraints to be used as a last resort during shifts and mealtimes and for no more than thirty minutes at a time. Restraint charts were lost. We don’t know how many times Terance was restrained over a period of twenty days, but we do know that restraints were used, as reported by his family. The surviving charts over a subsequent 41-day period show that he was restrained for 39 days, including more than six hours on 25 of those days, more than nine hours on 15 days, and more than 13 hours on five days. Terance was restrained during the day as he was falling asleep; he was restrained at night because he was wandering around.
As was later conceded, the staff could have tried to manage Terance’s behaviours differently; they could have sought advice from the Dementia Behaviour Management Advisory Service; they could have asked for an intervention by the Severe Behaviour Response teams. They didn’t.
After Terance had a fall, risperidone was stopped. He was found crawling on the floor a second time, possibly because of a fall. Another fall was recorded on camera.
Lillian took Terance out of the care home. “He never came back 100 per cent”, said Lillian, but he recovered partially — Terance was mobile again but remained incontinent and incapable of speaking.
The Commission emphasised the lack of consent for the medication. While the Commission didn’t define Terance’s restraining as mistreatment, they concluded that the restraints were “unjustified and represented substandard care that put Mr [Terance] Reeves’s health, safety and wellbeing at serious risk”.
The Royal Commission’s interim report was entitled “Neglect”; the final report, “Care, Dignity and Respect”, continued to describe neglect and the structural issues plaguing our aged-care sector. Core to all these issues is the way older people are seen and treated in our society, particularly those who are frail and require support. They are often seen as lacking agency — that is, as not having the capacity to act or make decisions about their lives. We can see this reflected in how the aged-care facility dismissed the care-related information provided by Lillian. Tellingly, the fact that we didn’t hear what Terance wanted suggests that people with dementia are also assumed to lack agency.
This overall perception of lack of agency in later life has real consequences for older people, excluding their voices and experiences. The Royal Commission brought to light what many of us already knew: “Ageism is a systemic problem in the Australian community that must be addressed”, wrote Commissioner Lynelle Briggs.
Why ageism matters
We have a complicated relationship with age. Most of us do not want to die young, but we also don’t want to be old. The recent Twitter #DontLookYourAgeChallenge shows how ageism is so ingrained in our everyday lives. What is the problem of looking your age? And what does our age look like, anyway?
The 2021 World Health Organisation report on ageism found that discrimination, prejudice, and stereotypes based on age are pervasive: 1 in 2 people worldwide are ageist. Ageism is insidious. It permeates understandings of people’s life stages, so that the process of getting older — once something to be celebrated during childhood, adolescence, and young adulthood — shifts in middle adulthood to be something that is denied or hidden. Motifs such as “40 is the new 30” serve to reinforce the idea that there is something to be rejected or resisted about getting older.
Negative thoughts, feelings, and actions about ageing are held by younger and older people alike. Because these ideas are ingrained, ageism is not always intentional. Even where efforts are made to celebrate ageing, ageism is included: for example, explaining a person’s achievements or behaviours “despite their age” as worthy of celebration.
The COVID-19 pandemic has exacerbated the way we see age groups differently: older people were all vulnerable and disposable; young people were irresponsible risk-takers. Ageism can affect all of us, but has been rampant against older people during the pandemic.
Research has shown that ageism starts in early childhood, as children internalise and normalise age-related stereotypes. Being old is equated with being sad and dependent. It is then perpetuated through our lives and seldom challenged by others around us and by our institutions — when we get to old age, we have internalised ageing as a problem, a deficit, a cost.
Ageism and health are linked
Ageism is deeply embedded in our society and institutions, including in those that provide health care in later life. During the pandemic, we witnessed a range of discriminatory practices in access given to health care and in the definition of blank policies that used age as the only critical factor.
The problem with ageism is that it robs our older people of their dignity, contributions, health, and quality of life. It increases their risk of cognitive decline, loneliness, and social isolation. It has serious social costs: from the loss of accumulated life experience and skills to economic costs. A recent American study found that the cost of one year of ageism perpetrated against older people equals US$63 billion in health costs. Ageism led to more than 17 million cases of health conditions, such as cardiovascular and respiratory diseases, mental issues, diabetes, and musculoskeletal disorders like osteoporosis.
But ageism is also used to justify broader neglect and disregard. Part of this is what we might call structural ageism, which ranges from denied access to health care and exclusion from clinical trials, to lack of work or social opportunities. We can see this in the silences or gaps in our understandings of social issues. For example, although homelessness is depicted in the media as associated with youth, the fastest growing cohort of people experiencing homelessness in Australia are women in their fifties.
Our awareness of these social issues tells us about how people’s worth is seen as they move through life. Importantly, they are reflected in policies and practices — including in relation to health and care in later life.
Why substandard aged care is ageist
Substandard care, which is woven throughout the case studies reported by the Royal Commission, exemplifies the prejudices that are held against people as they age. The findings of the Royal Commission and related commentaries illustrate dimensions of care — or more specifically, care failures — that have been accepted in aged-care settings but which would be unacceptable, immoral or unethical in other care institutions. Imagine a childcare worker restraining a child for many hours at a time. Just the thought of this is horrific, but as the Royal Commission showed us, such restraining regularly happens in aged care settings.
The effects of ageism were well-documented by the Commission; profound harm is not only caused by direct actions — the things one does to another — but also by failures to act. Failures to act reflect a society’s priorities, and can have deadly implications for vulnerable people. Globally, the COVID-19 pandemic has laid bare the failures to act properly or to act enough. In Australia, the absence of (and failure to develop) guidelines around infection control in aged care following the Newmarch House outbreak suggests a failure to take the needs of older people in institutional settings seriously.
For Terance, whose story we outlined above, direct actions and failures to act contributed to his poor outcomes. The direct actions — medication, restraints, improper toileting — occurred because of multiple failures to act. The failure to safely monitor his mobility, the failure to recognise that medication put him at risk of falls, the failure to record Terance’s conditions. This all happened in aged-care settings that were subject to “regular” quality care auditing and self-assessment for compliance with aged care standards. Shockingly, Terance was only in residential care for two months. That such profound harm could occur in such a short time shows the dangers of substandard care. And we know from the Commission’s report that Terance’s case was not unique.
The system needs an overhaul. Aged care staff work in an undervalued sector and, consequently, are underpaid for their physically and emotionally demanding labour. They often receive insufficient training, work long hours, and operate under high staff-resident ratios. Improving quality of care requires stronger social policy reforms that address staff recruitment, training, and retention.
The government has now responded to the Commission’s report, right after pledging a budget commitment to the aged-care system. We will have mandated care time per resident, more home care packages, more respite for unpaid carers, more regional investment and funding for First Nations communities. Loneliness and social isolation are finally recognised in the government’s response as social issues that must be tackled in aged care, as evidenced in our research.
However, the government’s response and related federal funding is far from a “generational change”. Without proper accountability, transparency, and support for aged care staff, older people will not be the “winners”. The additional government funding of $10 per resident per day will be “pocketed by operators”, as noted by Professor Joe Ibrahim. And it is not even enough to improve the quality of the food served in aged-care facilities, as warned by chefs working in the industry. That there are no specific guidelines on how that extra daily fee should be spent by aged-care providers is concerning. This is also unlikely to translate into improvements for aged care staff, which the Commission deemed fundamental.
The mandatory training in dementia care for staff, as recommended by the Royal Commission, was taken by the government as optional training. This training would have been life changing for Terance and his family.
Why it takes more than actions in aged care
While reforming the aged-care system is essential and urgent, changing institutionalised ageism must be accompanied by a shift in social attitudes towards ageing. The new Aged Care Act announced by the government, which will include diverse voices of older people, seems promising. The establishment of an advisory “Council of Elders” encompassing older Australians with different life experiences sounds promising too. But we need more than that.
Addressing ageism starts with the conversations we have in our everyday lives: as we go about our daily business, at home, in the community, at work. Significant efforts are made in the media to combat the pervasiveness of race- or gender-based discrimination. Age-based discrimination requires the same level of advocacy, care, and attention. Like sexism and racism, combating ageism is everyone’s responsibility, not just the responsibility of older people and their families, or of aged care providers.
As researchers have noted, and the Royal Commission makes clear, what can happen once we reach old age is deeply troubling, especially if our life circumstances make it difficult to keep living independently. A later life with dignity and respect was what Terance and Lillian desired, but this was what ageism ultimately denied them — that ageism cannot continue to exist in our policies, practices, and society.
Barbara Barbosa Neves is a Senior Lecturer in Sociology at Monash University.
Narelle Warren is a Senior Lecturer in Anthropology and Sociology at Monash University.