Caring about the insights of older people with dementia

Re-assessment of the quality of aged care in Australia is in progress – a priority laid out by the Royal Commission into Aged Care Quality and Safety – and Flinders Caring Futures Institute is playing a leading role to ensure that the voices of all older people are heard to drive positive and effective change. 

Flinders Caring Futures Institute has been instrumental in forging significant progress within the aged care sector, having developed two new validated quality assessment tools – the Quality of Life-Aged Care Consumers (QOL-ACC) and the Quality of Care Experience-Aged Care Consumers (QCE-ACC), which are now available and being used throughout the sector. 

Now, CFI researchers are taking these advances a step further, with aims to adapt the QOL-ACC and QCE-ACC tools that will enable wider collection of self-reported quality of care and quality of life information from people with dementia living in residential aged care. 

“It is crucial that older adults have confidence in the quality of care delivered within the aged care system, and having an effective, transparent measurement of the quality of care delivered in the residential aged care sector from the perspective of aged care consumers is critical to this,” says Dr Rachel Milte, chief investigator in the ongoing research project ‘Giving people with dementia a voice in aged care quality assessment’.  

Dr Rachel Milte

“However, there remain questions about how best to undertake these types of assessments in a population where more than half the residents have a diagnosis of dementia.  

“If people with dementia are going to have an active voice in their own aged care quality assessment, systems have to change – and a key component will be the introduction of an effective assessment tool that includes the input and reactions of people with dementia.”

This is an expensive and complex problem to address. More than 1.3 million Australians receive aged care services annually, at a cost of over $18.1 billion – and there are steadily increasing numbers of older Australians utilising the Aged Care system.  

To help steer effective change, this new project – conducted in partnership with Kalyra aged care – will focus on maximising self-completion of questionnaires and reduce the need to rely on proxy assessments (by family members or close friends). This will support the scalability and cost-effectiveness of the National Aged Care Mandatory Quality Indicator Program. 

“Through increasing the representation of older people with communication difficulties in research and evaluation, these responses will remove bias from our evidence base and promote accurate evaluation of the impact on quality of life and quality of care experienced by older people of innovations in care in health and aged care settings,” says Dr Milte. 

“Ultimately, this will provide accurate information to policy makers and practitioners about which innovations in care should be funded to improve the quality of life and wellbeing of all older Australians.” 

A crucial building block for this research included a scoping review of currently available communication-accessible QOL measures. It identified 19 different existing instruments to focus on the needs of people with aphasia (speech impediments due to brain damage) and with a disability, and this provides crucial information for developing the most effective communication accessible instrument for people with dementia.  

“It highlights the success of Easy-Read techniques, which have been adapted from the disability sector through the use of plain-language, short sentences and guidelines for visual layout of information,” says Dr Milte. “Along with visual representations of concepts and iterative consumer co-designs, it helps provide a strong framework for this research program.” 

This project will provide practical and direct benefits for Australia and internationally, as well as advancing knowledge in the fields of dementia, quality of care assessment and also the use of person-reported outcome measures (PROMs).  

The findings will also enable the inclusion of people with dementia in research and evaluation processes – areas where they have previously been excluded from.  

“Their authentic voices will be heard in quality assessment for the first-time, providing significant benefits of inclusion and equity for marginalised groups with diverse communication needs and dementia,” says Dr Milte. 

“It will help assist providers, clinicians and researchers in the aged care sector, delivering robust evidence for more effective models of care.” 

Posted in
Quality Aged Care