Dementia is one of Australia’s most widespread and impactful health conditions, directly affecting almost two thirds of aged-care residents. Whether managing prodromal symptoms, or a more progressive stage of cognitive impairment, the consequences of poor dementia care can be significant.

While the last ten years have seen notable developments in the realm of diagnostics and post-diagnostic support, there are currently large variations in the quality of care provided, nationally. Despite this there has, until recently, been no way of measuring the level of care individuals living with dementia – and their families and carers – receive.

Dr Stephanie Ward – a practicing geriatrician and researcher – and her colleagues at the Australian Dementia Network (ADNeT) are changing this, with a new clinical quality registry designed specifically for people diagnosed with dementia and mild cognitive impairment.

Taking inspiration from countries such as Sweden, the Australia-first initiative seeks to highlight variations in national care provision, and pinpoint areas for improvement. Gathering data at the time of diagnosis, the ADNeT Registry will ultimately provide insights on how to enhance quality of life for people affected by the condition.

“Post diagnostic support has really improved in recent years and there are far more programs today than there were years ago for people diagnosed with dementia. On top of that the potential for new medication, blood biomarkers, and diagnostic modalities has grown enormously,” Dr. Ward said ahead of the National Dementia Conference, hosted by Informa Connect.

“However, we are still hearing all too frequently that people’s experience of dementia diagnosis and care is falling short. For this reason, the type of data the ADNeT registry is gathering will be incredibly powerful.”

So far, the initiative has been well-received by clinicians, who find value in benchmarking their practice. Since its inception in 2020, five states and more than 46 clinics have participated in the program. These range from specialised memory, to outpatient departments, and primary care settings.

“Clinicians, like myself, like being part of the Registry. It’s a way to feel more connected and understand how our practice and patient profile compares to other sites,” Dr. Ward said.

“When you participate in national benchmarking you can get a real sense of the quality of care you are giving. Ultimately, everyone wants to perform their jobs to the best of their ability and this tool provides the knowledge to do that.”

Areas for improvement already identified

The Clinical Quality Registry has already revealed a number of priority areas for raising standards in dementia care. The length of waiting times to see specialists, clarity on where to go following a diagnosis, and guidance on how to maintain an adequate quality of life, were among the priorities identified.

“We have heard of some unsatisfactory experiences in terms of not knowing where to go after a diagnosis; or being told that dementia is just an age-related condition and there is not much that can be done about it.

“It is important that a dementia diagnosis gives individuals hope and doesn’t leave people feeling uninspired about the life ahead of them. When sites get information [from the registry] back it can be a real incentive to do things differently,” Dr Ward said.

In the absence of a medical cure for dementia, Dr Ward says these findings are encouraging because they show that aspects of clinical management can make a difference.

“It gives us hope that – with knowledge and targeted effort alone – we can still make significant improvements to somebody’s experience of dementia. It confirms that the registry data collation is worthwhile,” she said.

Ongoing enhancements

The Registry is undergoing continuous development as new diagnostic modalities, blood biomarkers and medications gain authorisation for usage.

“It is a long term proposition that will grow over time. The work we are doing now will provide the infrastructure necessary for evaluating new diagnostic tools, their uptake, and real world outcomes outside of clinical trial,” Dr Ward said.

Currently, Dr Ward and team are also exploring longer term care outcomes via a dataset for longitudinal follow up.

While there is significant room for improvement, Dr Ward says she is pleased with the outcomes achieved so far.

“I am proud with how we have been able to involve consumers in the design of patient and carer surveys; and it is often their voice in my head that keeps me going. Their input and enthusiasm has been a real driving force.”

Hear more from Dr Stephanie Ward about the important work her team are doing at the National Dementia Conference hosted by Informa Connect.

This years’ event will be held 23-24 June at the Crown Melbourne. Learn more and register here.