Consumers drive dementia research agenda

Sue Pieters-Hawke speaking at the launch of the Consumer Research Dementia Network.

A group of 24 Australians affected by dementia are at the forefront of a new project to translate research evidence into practice.

The Consumer Research Dementia Network is part of a $3 million initiative that will bring together researchers, consumers and aged care providers.

The project is being led by Alzheimer’s Australia and the Dementia Collaborative Research Centres (DCRCs) with funding from ANZ’s J O and J R Wicking Trust and Bupa Care Services.

The initiative is focused on narrowing the gap between best practice ideas and clinical practice.

Drawing its members from around the country, the consumer network has decided on four key priority areas for knowledge translation projects, including person-centred care, support services for carers, timely diagnosis and non-pharmacological interventions.

Alzheimer’s advocate, Sue Pieters-Hawke said it was important that ordinary Australians affected by dementia were involved in the research process.

“They shouldn’t be dismissed as just having their own point of view because very often carers are talking so much about dementia and learning from the people they talk to,” she said. “They are aware of much more than their own situations.”

“That means they are very good at seeing the sorts of areas that do need change. Having consumers networked and working with researchers and service providers to improve care is a great step forward.”

Alzheimer’s Australia has been developing the concept of a consumer network for the past three years.

The group’s CEO, Glenn Rees said the network had been set up according to a hub and spoke model with a light administrative structure to “maximmise the dollars going out to projects”.

“What we are trying to do is to match the concerns of consumers about dementia care on the one hand, with good quality dementia research on the other,” he said.

“Then we will say, ‘OK, the evidence to improve practice exists: what can we do to put it into practice?’

“The answer could involve training or social marketing or a whole range of different strategies.”

Mr Rees said the network would collaborate with different researchers and stakeholders for each project.

“It’s not a research project in the sense of having a bunch of researchers together in one centre,” he said.

“It’s much more about promoting best practice in areas like pain management, end [of] life care and other similar areas.

“It may involve the government, it may involve the DTSCs [Dementia Training Study Centres], it may involve the DBMASs [Dementia Behaviour Management Advisory Services] and it could also involve service providers or professional organisations.

“The thing that makes this original and different is that it is pulling various actors together and bringing a national approach rather than just focusing on particular states or provider groups.”

Bupa Care Services’ Director of Services and Quality, Leanne Morton said the organisation was excited to be supporting such an important project.

“This initiative is a vital way for us to directly tailor and adapt our aged care services to what people affected by dementia are telling us.”