Val Fell is 92, a former maths teacher and statistician, and became her husband’s carer in 2006 when he developed Alzheimer’s Disease. In 2010, Fell established a support group for dementia carers in the Illawarra region, a group that is still in operation today. She is a volunteer dementia advocate for Dementia Australia and a peer educator with COTA.
Fell began by saying that any innovations in aged care must be based on a human rights framework, and she explained in detail what that would mean in practice for her.
She explained that an aged care framework based on human rights “means that regardless of my age I’m still going to be regarded as an individual”.
“I reserve my right to decide when I will eat and what I will eat, and the environment in which I live.
“I need to be an individual. Everybody going into an aged care facility, or being a recipient of home care, still needs to be regarded as an individual.
“We’re still people,” Fell added.
“Once we reach a certain age, it doesn’t mean that we can sit in the corner for the rest of our lives and do nothing and contribute nothing. I still want to be part of the community.”
Older people’s top concern: Staffing
In her extensive consultations within the community, Fell said the most common concern she hears about aged care is that it is not adequately staffed.
“I want a caring staff with empathy who will treat residents as very important people. I want enough staff at night. I want an RN on duty at all times. I want time for staff to engage with residents.”
Staff also need to be appropriately qualified.
“I want to have medical services available 24/7 … I want to be able to have access to a good GP, and I want staff who have the capacity to motivate people to participate in activities,” Fell said.
Residents should also be able to help in the design of the environment in which they live, for example, in having a say in how their room looks. After all, their room is their home, said Fell, before conceding it’s “hardly the right word for it”.
Cleanliness was also vital. Aged care residents want “a place that doesn’t smell,” Fell told the panel.
Aged care homes should also be “local”, “not too far” from the person’s regular community, “not too big” and “not too many floors”.
“We like to have cottages, a home-like environment, single rooms with their own space where people are not on top of one another.
“I’d also like to have access to the outside. That’s very important,” Fell said.
Residents must also be able to access their communities and “go out into the world”.
“Even if it’s only on bus trips, there’s no reason why a group of people from the residential facility couldn’t go to the local food court, or to see performing arts, to still be living as an individual,” she said.
Activities for residents should be “stimulating”, “interesting”, “meaningful to them” and “something that has a purpose”.
“They don’t just want to sit and look at television or play bingo,” Fell told the panel.
Residents should also be able to leave the facility itself for periods of time “without any great hubbub or hullabaloo”.
“We lose the individual”
Anne-Marie Elias is the CEO of purposeful investor Beckon Capital. She also cared for her parents when they moved into residential aged care, where her mother still lives.
Elias’s parents led active and fulfilling lives. Both received an order of Australian merit for their service to the community, and they were both advocates for Beyond Blue and the Italian community.
It was a “massive blow” when her father had to move into residential aged care, and it didn’t take long before Elias realised aged care had not kept pace with the times.
“My dad was devastated because he didn’t want to play bingo. He didn’t want to colour in. He didn’t care that it helped his fine motor skills. He wanted to talk about the news and politics and that service just wasn’t offered,” Elias shared.
“We need to move aged care from considering people that enter aged care as patients to consumers, to people who have had lives that nursing staff and carers should be aware of.”
Some residents are “amazing” but “we lose the person,” Elias said.
Elias told the story of a man she and her family grew to know at the home, but it was two years before they discovered he founded the delicatessen chain, Cut-Price Deli. No one at the home had taken the time to find out what he had done during his life.
Elias’s family is of Italian heritage.
“Don’t even get me started on food in nursing homes,” she told the panel.
Residents offered to supply recipes that reflected their heritage or family, but the home wasn’t interested.
“It’s all too hard,” she said.
Some residents order UberEats, a trend Elias expects will only grow as younger generations enter aged care.
“Then why are we paying for food in aged care?” she asked.
Elias’s father was in palliative care towards the end of his life and a few months before he died, he told Elias, “He knew what he had to do.”
“It still hurts me to this day,” Elias said.
Elias and her brothers visited him every day, and always told him how much they loved him, but it was not enough. Her father wanted aged care based on his wishes and needs.
“His final wish was, why can’t we do an NDIS for aged care? Why don’t we have an aged care insurance scheme that gives people dignity, that gives people choice?” Elias told the panel.
Elias said too often aged care only caters to “the lowest common denominator”.
“That is why there’s bingo and there’s colouring in which serves maybe a large proportion of people, but it’s not serving the people that still want to be engaged and need to be engaged,” she said.
She would like to see residents treated more like customers.
“Maybe then we’ll pay more attention to them,” she said.
Putting human rights into practice
Craig Gear is the chief executive of OPAN. In an echo of Fell’s quest for a system based on human rights, Gear said the main wish of the older people he speaks to is for residential aged care to respect their human rights.
“They want to be treated as individuals,” he told the panel.
“The future of residential aged care is a respectful, human rights-based practice,” Gear added.
But the “concept” of human rights has to be translated into “practical, everyday aged care practice,” he said.
Gear had recently seen a video of a carer waking a resident for their shower. The resident obviously wanted to continue sleeping, but the video showed the staff member persisting. It was obvious they were not thinking about the person as an individual.
Seeing the video made Gear feel tearful: he knew he had done just that during his years working as an aged care nurse.
There needs to be enough time and staff to get to know the person, know what they like in their routine, and allow them also to change their routine – if they want to sleep in or stay up late watching Netflix, they should be able to, said Gear.
Elias said attracting not only carers and nurses to aged care, but also volunteers, advocates and university students to live in aged care could help to provide the attention and manpower needed in aged care homes, and boost residents’ quality of life.
Gear would also like to see an emphasis on not only keeping people well but also improving their function.
They should be enabled to continue to “engage in life” and “make their own decisions”.
The older people who speak to OPAN say they want to be supported to make their own decisions, as much as possible, and not have someone else make decisions for them.
“Even if it’s only the small things,” Gear said.
Maintaining and building connections with the community are also important. Visitors, family, friends of choice and advocates should all be able to support residents in aged care homes.
Having steady access to interactive and empowering technology, without any barriers, is also key. Technology can be used to keep in touch with friends and families, and to be alerted to any activities at the aged care home that are on that day.
Intergenerational programs are also beneficial, working two ways: bringing joy to residents and an opportunity for socialisation and learning for the youngsters.
Fell said that if people learn early in life that older people are “not just useless people, they’re still people and they still have stories to tell and they can still help you”, it can go some way to dispelling ageism and hopefully contribute to people “wanting” to work in aged care as they grow older.
The voice of the older person must be “embedded” into everything the aged care organisation “lives and breathes,” said Gear.
Older people can participate in developing care and social practices, they can be involved in complaints, on resident committees, in lifestyle activities, and ultimately they should be sitting on the boards of aged care organisations.
“We’re not far from the future,” said Elias. “It’s up to us now to create that future.”
“I’m there,” said Fell. “I’m waiting for it, day by day.”