Collaborative teamwork is what pushes framework breakthroughs – new ways to improve dementia care announced by University of Queensland

The complexity of aged care, and the particular cruelty of dementia, for both diagnosed and loved ones, means that breakthroughs of substance have been difficult to secure. In an encouraging move bucking that trend, a new framework to closely monitor and elevate the care of dementia patients, within the Australia aged care sector, has been facilitated within a novel project led by researchers out of the University of Queensland.

Listening comes first

The recommendations coming out of this project are expected to support securing the sustained care provided, to those living with dementia, as always deriving from their needs. In the past well-intentioned clinical models have had a top-down approach to impart what is expected to meet core needs, instead of listening to those diagnosed and their carers first. That’s where this project differs. Front and centre within the large group of stakeholders were people living with dementia and their families. Leveraging their expertise and experience as well, were care providers, researchers, policy makers and health care professionals.

From the work of gerontologists like Daniela Russo, and Dr Cecilia Chan, dementia care must be rooted and established in the lived experience of those with dementia, and their carers who are managing the condition day-in and day-out. For breakthrough, frameworks, to honour their realities, their stories, hopes, fears and fatigue, can only have but one position in research, core.

Reality led policy reform

What has evolved from this project is a robust framework to centralise the tracking and improvement of care towards dementia patients within the sector at large, both in RAC and at-home care. This is precisely what government policy needs, direct insight from those living with dementia, being listened to and providing the guidance that lends itself to effective and grounded policy. The report from the project is intended to do just that, guide government policy, and aged care providers, to leverage its insight to review current practices and augment from learnings made.

Professor Tracy Comans of UQ’s Centre for Health Services was the project’s Chief Investigator. Speaking to the UQ news team she says that the goal was to distill key outcome components within everyday care, and to utilise these markers to verify the effectiveness of care methods in areas of dignity, pain, hygiene and activities of substance and meaning.

Seeking quality markers

The hope of gleaning data to standardise standards of outcome and management are tricky in dementia care but are worthwhile to underpin policy progress in effectiveness and areas of improvement. In terms of seeking to find a collection of core outcome markers, Comans notes, “these will help ensure that the care provided meets the needs of people living with dementia, either at home with support services or in aged care.”

Continuing she says, “To improve care, we need consistent, high-quality data on the support people with dementia receive, and one way to achieve this is through standardised measures.”

“Using the recommended measures ensures that care quality is evaluated in a clear and consistent way and with information that can be compared across different aged care services”.

Sustained opportunity to learn

Figures from the Australian Institute of Health and Welfare highlight the stark reality of the condition in Australia. “Dementia is a progressive condition that leads to reduced life expectancy, and was the leading cause of death for Australians in 2023.” The hundreds of thousands of Australians living with dementia are best supported by a coalition of expertise, research listening to lived-experience and findings deriving from this approach can lead to establishing sustained quality care.

For those with a diagnosis and their loved ones, the consistent message is the depth of fatigue felt, and consequently, the need for sustained support in approach and shape of care. Part of that support, for loved-one carers and professional carers is the need for sustained learning. Russo, a gerontologist with over twenty years of clinical experience advocates for consistent humility in being open to learn more to support the quality of care given.

This attitude is reflected from the project’s findings. Danelle Kenny, a PHD candidate working within the project notes, “While formal qualifications don’t necessarily translate to improved care, the lack of dementia-specific training can lead to breakdowns in communication and erodes the positive care relationships between those giving and receiving care.”

“For too long, health care has reduced patients to a collection of symptoms, labels and problems to be fixed and we need to move beyond this to see these issues in the context of the whole person.”

Treating the whole person

Russo and Dr Chan have long advocated for the wholistic treatment of those with dementia. A person with dementia is all of themselves, where they live, who they love, who is in their home, what they loved, what they love now, the complexity and mess of dementia must be fully acknowledged if care is to realistically, sustainably and humanly be brought to a place of depth and quality for those diagnosed, as well as loved-one and professional carers.

Kenny notes, ““These recommendations have been primarily developed for the Australian Government to aid future policy review and development in aged care quality improvement, as well as for use by aged care providers who may review and modify current practices.

“These results could help shape better aged care policies and support more compassionate, person-centred care across Australia.”

The sector at large is bolstered by human-centred rigorous research, where data comes from lived experiences. In honouring the difficulty of dementia, the brokenness, fatigue and mess, clinical research can significantly contribute to shape the best possible way forward to support those diagnosed, and their carers, whether loved-one or professional.