What does quality of life look like for an older person in home or residential aged care?
It’s a question we have been asking politicians, medical experts, media commentators and the wider Australian community since the Royal Commission into Aged Care Quality and Safety released its shocking findings in March.
But long before this, Professor Julie Ratcliffe and her team of researchers at Flinders University’s Caring Futures Institute put the question to older Australians in care, in order to develop two new tools which will give a voice to those at the centre of it all.
“We know that quality assessment in aged care up until very, very recently, with the new aged care quality standards, has been very clinically focused, [using] clinical indicators of quality care,” Ratcliffe explains.
“Obviously clinical indicators of quality of aged care are very important, but our view is that equally important is the view of the older person themselves, their family carer and their wider families, about the quality of care that they’re receiving,” she adds.
Quality of Life Aged Care Consumers (QOL-ACC), is the culmination of three years’ work, funded through the Australian Research Council linkage grants scheme and involving approximately 2500 older Australians and seven aged care providers.
“So we started in the first year, with a series of in-depth qualitative interviews with older people receiving aged care services in the home, then we extended that qualitative work to older people in residential care settings,” Ratcliffe explains.
“We basically started with a clean slate, asking older people what quality of life actually means to them … and when they think about quality of life, what sort of features or characteristics would encapsulate quality of life, from their own perspective.”
The researchers found that regardless of the care setting, responses from those interviewed were broadly consistent, with six key quality of life dimensions identified.
The first is the ability of the older person to retain their independence, where possible, and the second is the extent to which they can be mobile in their home or community.
Emotional wellbeing and opportunities for social connections were also mentioned, along with the ability to keep busy and enjoy hobbies and activities.
… the view of the older person themselves, their family carer and their wider families, about the quality of care that they’re receiving (is important).”Professor Julie Ratcliffe
“And then the final quality of life dimension was essentially around pain management,” Ratcliffe says.
“…older people, to a certain extent, accept that as they age aches and pains are going to be a natural part of the aging process.
“But what they were concerned about, and what they told us did have a big impact on their quality of life was the extent to which that pain was actually managed well, either in the community or in a residential care setting.”
Of course, for older people living with dementia, self-assessment can be a bit more complicated.
“Approximately 53 per cent of older Australians in permanent residential aged care have a dementia diagnosis. Where possible, we recommend that older people are encouraged to report their own quality of life and quality of care experience data,” Ratcliffe explains.
“However, when this is not possible, we have versions of both the measures that can be completed by proxies, that is a family carer or other person who knows the older person well and sees them regularly.”
A second sister-tool, the Quality of Care Experience – Aged Care Consumers (QCE-ACC) is focused on quality of care and care experience from the perspective of the older person.
The QCE-ACC also identifies six dimensions, including the extent to which the older person feels that they are treated with respect and dignity by the aged care staff, and the extent to which they feel supported to make their own decisions about the care and services that they receive.
“The third dimension is that the person feels they receive care and support from aged care staff who have the appropriate skills and training…” Ratcliffe says.
Next is that they receive the services and support for daily living that best promote their health and wellbeing, and that they’re supported to maintain their social relationships and connections with the community.
“Then finally, that the person, their family carer and the wider family, if necessary, is comfortable that they can lodge complaints with their aged care service provider … and that service provider will take the appropriate action to resolve those complaints,” Ratcliffe adds.
… we really do need these tools to be implemented sector-wide, to be able to constantly monitor quality of care experience and quality of life.”Professor Julie Ratcliffe
Ratcliffe hopes to see both tools implemented right across the aged care sector.
“We feel that these tools are really needed in the sector,” she says.
“Obviously, with the findings from the royal commission … and the terrible tales of abuse and neglect … if these tools are applied sector-wide, then they’re going to be monitoring the quality of care experience and quality of life of all the people receiving aged care services across Australia, from their own perspective.
“So these instances of maltreatment and neglect, A, shouldn’t be happening at all, but B, if they do appear then these instruments will be red flagging those types of incidents across the sector.”
Ratcliffe it would also be an important step toward creating more consistency in aged care around Australia.
“We know that there are some very good aged care organisations out there that are really providing the best standard, best practice care. But we know, as the royal commission has highlighted, there is also a lot of substandard care out there.
“So we really do need these tools to be implemented sector-wide, to be able to constantly monitor quality of care experience and quality of life.
“What we envisage is that a person would be regularly assessed … ideally once every six months or so, to check on their quality of life and their quality of care experience, and to make sure that the standards are kept as high as possible throughout the care experience.