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More like a home, less like an institution, is what older Australians are saying they want from their future aged care as the royal commission findings and recommendations pass their first anniversary.
With some older people saying death is preferable to entry into a residential care home and others saying they they will never enter one, it's obvious the aged care industry has taken a very serious hit in public confidence.
It leaves much to be done by government and the industry to persuade today's educated and tech savvy boomers and their families that entry into a care facility is not just the beginning of a scenario of despair, neglect, abuse and loneliness followed by a sad death, but can be a positive next step in life.
Over the past year peak advocacy group National Seniors Australia used a series of survey questions to ask older Australians about their hopes and fears for aged care in the wake of the commission's hearings and media coverage.
The subsequent report, titled As close to home as possible, shows that many older Australians are giving serious thought to how they want their future aged care to look and the current highly institutionalised model is not in favour.
One of the major research findings was if older Australians had to go into residential aged care, they wanted a place that was more like a home than an institution.
National Seniors Chief Executive and Director of Research, John McCallum said respondents told the survey they wanted home cooked meals and accommodation that was home like and catered more for individual needs.
Survey respondents also listed increased staff numbers and better pay; diverse housing models; more opportunities to socialise for residents and greater accountability to prevent more abuse.
My mother is currently in an aged care facility. I find the system: profits before people and only consideration for their investors, to be disgraceful.
– Comment to National Seniors
"The Royal Commission and the media coverage have had a major impact on older Australians' attitudes toward residential aged care," said Professor McCallum.
"Many of those people who responded are worried they will suffer the same neglect and abuse they have heard and read about in evidence tabled at the Royal Commission.
"However, they say one way to combat this fear is for more smaller, community minded facilities with home like features."
My wife's mother was in a nursing home for about 3 years and experienced excellent care. We live in a rural community and our local nursing home has an excellent reputation.
– Comment to National Seniors
Professor McCallum said another impediment to entering residential aged care is the lack of easy to navigate information when choosing a home to go into.
"The term 'one-stop-shop' was a common theme among respondents who have found the current system confusing and opaque," he said.
One respondent summed up the feelings in the survey with this response: "Unless we ask the correct questions, we are not getting the answers we need to make a decision."
Other respondents said information given to them had too much "lawyer speak" and there needed to be more "plain English" explanations to help future aged care residents make the right choice.
National Seniors has identified five needs for older Australians in getting the right information, guidance and assistance in deciding on which aged care home they would choose.
Information about specific facilities
Effective communication
Guidance to improve navigating the aged care system
Professional services to protect the welfare of care seekers
And more public communication on aged care planning
Of those who said the reports of neglect and abuse had not affected their plans, some said they had no effect because their personal or professional experiences with the aged care system had already coloured their views. In some cases, those prior experiences had instilled negative views of the system. But in other cases, their prior experiences had been very positive, and they believed the reports of neglect and abuse unfairly emphasised the negative.
I do know that there are good aged care facilities, but the inhumanity of the bad ones really scare me.
– Comment to National Seniors
Some respondents also had faith that current improvement processes would fix the problems by the time they needed aged care.
Several survey respondents offered more abstract, inspirational visions of what residential aged care should be to make it something to look forward to, not something to fear.
Their comments inadvertently draw attention to the fact that the current emphasis is mostly on meeting basic needs rather than aiming any higher, and that people entering residential care often rapidly decline because their outlook is so bleak.
Residential care should not be about how many beds can we get on this block but about light, sunshine, gardens, bright and happy experiences involving everyone especially young people.
– Comment to National Seniors
Professor McCallum said that many respondents also expressed scepticism about facilities that were for profit. "A lot told us they saw profit and quality care as being incompatible even though there are plenty of for-profit homes which do a great job in looking after their residents.
"Conversely we have seen in the Royal Commission some not for profit homes which have let their residents down," said Professor McCallum.
I have no desire to enter aged care. It sounds very poorly regulated and rather cruel. The deaths in aged care during covid and the reported responses of the aged care minister and his either denial or apparent lack of interest and knowledge about what was and is going on in many of the homes, makes me feel very angry. It seems aged Australians are of no value and are dispensable.
– Comment to National Seniors
Respondents also suggested more not for profit homes would see fees come down.
Rising fees and costs was another major complaint respondents identified in the survey and was one of the 12 'ideals' to come out of the survey on how to improve aged care.
Other ideals included:
Increased staff numbers and better pay
Diverse housing models
More opportunities to socialise for residents
And greater accountability to prevent more abuse
Many respondents held a strong view that aged care services should recognise older people's diverse needs and backgrounds and tailor care for each accordingly, constantly adapting to their needs at the time.
They wanted aged care residents have the freedom to make their own decisions to the full extent of their capabilities, to decide what to wear, when to eat or shower, how to organise their days, and how to be addressed by staff.
They wanted to be able to leave for periods of time if they want to - to take holidays for example. People want residents to be respected, to be talked to not talked about as if they were absent, and to be listened to when discussing their health and capabilities.
They also want staff to remember and acknowledge that residents are not just care recipients but have lived lives and contributed to the world; as one person put it: "the people in their care have been doctors, scientists, farmers, builders, musicians and everything in between and they need to be treated with respect and dignity."
The people in their care have been doctors, scientists, farmers, builders, musicians and everything in between and they need to be treated with respect and dignity.
– Comment to National Seniors
The report said that sadly 71 respondents said they would rather die that enter residential aged care. It adds, "this is a poignant manifestation of the powerlessness and despair people feel towards a system that has caused significant emotional pain and trauma to many older Australians and their families. It is these people's views and lived experiences that need to be heard so previous mistakes are not repeated and residential care is a welcome and viable option for those who need it."