For the last three years a research team from Flinders University has been leading a project to develop an instrument that measures the aspects of quality of life that are most important to older Australians accessing aged care services.
Dementia Alliance International was a key partner in this research which sought to be inclusive in its scope, represented by one of DAI’s co-founders, and past chair and CEO, Kate Swaffer.
“Lead by Professor Julie Ratcliffe and Dr. Claire Hutchinson from the Flinders University, this project team has been a pleasure to work with. The team also included a number of representatives from residential aged care organisations in South Australia.
As a member of the team, representing Dementia Alliance International, this particular research project has been one of the best I’ve been involved in, and where such tangible – and useful – outcomes have been produced. And as a team member living with dementia, it has also been equitable and inclusive, without any paternalism, stigma or discrimination, which many will find hard to believe, is still rare.
Too often, in my experience of being invovled in research projects for almost 14 years, either as a particupant, a co designer, an advisor or as a researcher, a great many projects end up as digital papers, too often only referenced by others in new research, or new research articles, or as a website. And worse, I usually experience paternalism, stigma and discrimination, even if it is unintentional.” (Kate Swaffer, 2022)
Quality of life is a key outcome in aged care and many instruments currently in use were developed with generic adult populations, and therefore may not be relevant to older adults. The research team has engaged with over 3000 older Australians accessing services in the community and in residential aged care across five states to develop the ‘Quality of life- Aged Care Consumers’ instrument, known as the QOL-ACC.
The Flinders team partnered with researchers at the University of Sydney and Australian National University as well as with nine aged care providers, and Dementia Alliance International to ensure that the final instrument is reliable and valid, as well as acceptable and meaningful to older Australians.
Throughout the research the perspectives of many older adults with mild and moderate cognitive impairment were sought. The researchers have now developed a proxy version of the QOL-ACC for family carers to rate the quality of life of people with more severe impairment.
However, the researchers prefer older adults to self-report where possible and throughout the instrument’s development have focused on concepts and phrasing that is easily understandable and has been extensively tested with older Australians with a variety of cognition levels.
The QOL-ACC along with its sister instrument the Quality of Care Experience-Aged Care Consumers (QCE-ACC) are suitable for application in quality assessment and economic evaluation in aged care. Both instruments were included in the recent Department of Health Quality Indicators Pilot Program in residential aged care across Australia. The Department of Health in Australia expects to roll out the program –in the coming months, and we hope this will be implemented in residential aged care facilities globally.
Read one of the articles from this project, Developing a new quality of life instrument with older people for economic evaluation in aged care: study protocol, here.