Alzheimer's Australia's Consumer Dementia Research Network was established in 2010 to put consumers at the very centre of research into dementia, from high level agenda-setting through to reviewing the lessons learnt from individual projects.
CEO Carol Bennett has no doubt that Alzheimer’s Australia’s commitment to putting consumer needs and consumer experience at the centre of research is a key reason why the organisation was chosen to lead the new high-level National Institute for Dementia Research (NNIDR).
"We've got a model that incorporates consumers in research in a very fundamental way," she said. "It's now part and parcel of dementia research to have our consumers involved in setting priorities as well as implementation, roll-out and review."
That's the true innovation and benefit of the work of the Alzheimer's Australia's National Quality Dementia Care Initiative that was established in 2010 with the support of the Wicking Trust and Bupa Care Services.
Its aim is to empower consumers – people diagnosed with dementia and their families and carers – to lead the way in efforts to translate dementia care evidence into better practice and to engage with dementia researchers to help shape what they investigate.
"It's about driving reform in the experience of dementia by looking at what consumers want and need from the system," Ms Bennett said. "And it recognises the need to look beyond health and aged care to engagement with dementia across the broad range of the community, creating a dementia-friendly community and responsible and supportive systems."
The first phase of the national Initiative saw the development of a wide range of training programs and resources to promote best-practice, evidence-based care and broad influence at a systems level.
The Initiative also led a range of projects, from exploring best practice dementia design in gardens, at home, in the community and in residential care facilities through to investigating dementia-specific palliative care. All projects addressed areas that Alzheimer's Australia's consumer representatives identified as priority and resulted in new models of care, service improvement initiatives and systems improvements.
A new suite of projects is now underway, again identified as priorities by the consumers. These include helping health professionals such as dentists and allied health professionals work better with people living with dementia, and supporting better understanding and management of medicines.
Traditionally in research, says Ms Bennett, it has been the researchers, service providers and governments that have driven research directions.
"That tends to set up systems that we in the system think will best meet the needs of the people, rather than starting with what the people identify as their needs and designing around them," she said.
"We are showing that if you start from the consumer point of view, then you have got a greater chance of meeting that need and, particularly, of keeping people in their homes and communities and out of hospitals and other acute settings," she said.
Consumer and community engagement has long been a focus for Ms Bennett, who was a former CEO of the Consumers Health Forum of Australia. She says there is still a way to go before the central role of consumers in setting priorities, co-designing solutions and participating in evaluation activity is standard practice in health and other services.
She welcomes the momentum signalled by the National Health and Medical Research Council decision to appoint Alzheimer's Australia to establish and operate the new National Institute for Dementia Research to drive improvements in dementia prevention, diagnosis and treatment. It has the brief from the Federal Government to ‘change the game’ in dementia research in Australia.
Alzheimer's Australia's capacity to position consumers as partners in driving the research agenda would not have happened without the support of the Wicking Trust for the National Quality Dementia Care Initiative, she said.
"This support has enabled us to foster research priorities driven by the needs and priorities of consumers. It's about consumers saying that, from their experience, these are the areas that need more attention and focus and then directing resources toward that innovation."
"Without the support of the Wicking Trust, the foundational and innovative work of the National Quality Dementia Care Initiative would not have happened and we would not be in such a strong position to see consumers influence and contribute to the translation of knowledge into innovative practice and solutions. ”
The Wicking Trust has supported various initiatives of Alzheimer’s Australia (and its State-based affiliates) since 2005. The Trust’s current grant commitment to Alzheimer’s Australia concludes in late 2016.