New initiative to drive next generation of dementia research

The Centre for Healthy Brain Ageing (CHeBA) at the University of New South Wales is seeking corporate and community support through a new initiative that aims to ramp up dementia research through a mega-database of international research and a large Australian prevention trial.

The Dementia Momentum, which was launched in Sydney on Wednesday night at a corporate event hosted by in-kind supporters KPMG, aims to drive efforts to raise awareness and develop strategies to prevent or delay the onset of dementia in Australia and around the world.

At current rates, the number of people with dementia is estimated to increase to almost 1 million in Australia by 2050, which will require a tripling of the aged care workforce and 500 new dementia beds a month for the next 40 years.

Co-director of CHeBA, Professor Perminder Sachdev said delaying the onset of dementia for five years could halve the overall rates of dementia because the prevalence doubled every five years.

“That is something we think may be achievable within the next one or two decades,” Professor Sachdev told the launch.

“But what we need is more research and that’s where the Dementia Momentum comes in.”

For every dollar spent on research for dementia there is probably $7 spent on cancer, so there is a long way to go to catch up with other fields, he said.

“We know that the research dollar does matter. We have seen that in cancer in terms of the rates and how they have changed.”

Professor Sachdev said researchers at CHeBA wanted to “try to harness big data” to bring the data sets from longitudinal studies on ageing from around the world together.

“The idea would be to get the data together in one spot to look at the commonalities, to look at large amounts of data in terms of mega analyses, to look at consistencies and differences across different countries and see whether that would help us look at the risk and preventative factors.”

The gathering, pooling and analysing of big data sets require significant resources,  Professor Sachdev said.

From there, Professor Sachdev said they wanted to launch a prevention trial with a group of 20,000 people where they would do a range of lifestyle, exercise, cognitive training, and social interventions, and control of risk factors, such as hypertension, diabetes, smoking, high cholesterol and obesity.

Once they have the information, Professor Sachdev said they wanted to make it accessible to ordinary Australians through one-stop clinics where a person could get advice on healthy ageing, early diagnosis and strategies for prevention or to reduce decline in the future.

While they have an NHMRC grant for funding for a big trial Professor Sachdev said they needed further support to manage the trials because they were so large and run over a period of time.

‘A call to arms’

Key Dementia Momentum spokesman Richard Grellman, who is chairman of Genworth Mortgage Insurance, IPH and AMP Foundation, shared his experience and the story of his wife, Suellen, who was diagnosed with advanced young onset Alzheimer’s disease four years ago.

Now 64, Suellen has been living in residential care for almost 12 months.

Mr Grellman said it has been a difficult and frustrating journey that began with not knowing whether his wife’s changes, which included less social confidence, more forgetfulness and less-tolerance of activity and noise, were a normal part of ageing for a person in their mid-50s.

“One of the objectives of the Dementia Momentum is to try to put more definition around what is normal, natural, cognitive decline as we get older and what is something more fundamental that is taking place,” Mr Grellman told the audience.

He said:

“Physicians, medical practitioners often have as much trouble with that as a laymen. I am certainly hopeful that the Dementia Momentum will make strong advances in that regard.”

After 18 months going through a process of eliminating what she didn’t have, Mr Grellman said they saw a physician who would not diagnose Suellen and used euphemisms rather than saying the word dementia.

“I found it grossly unsatisfactory so I went on a bit of a mission to find the best in the business,” Mr Grellman said.

Mr Grellman approached co-director of CHeBA Professor Henry Brodaty who took on Suellen as a patient. After an exhaustive testing process, Mr Gellman said Professor Brodaty spoke to them in a direct, unemotional and factual way.

He told them that Suellen had Alzheimer’s, it was incurable, and that she should get her affairs in order and live her life in the few years she had left, Mr Grellman said.

“Funnily enough, it was a very refreshing message to receive because until that point we weren’t sure what we were dealing with. And to finally know that we had this ‘call to arms’ was the kindest thing a health professional could have done for us.”

Mr Grellman, who spent 32 years working at KPMG, told his former colleagues and other guests that he found the statistic of needing 500 new dementia beds a month for the next 40 years extraordinary.

“If that doesn’t capture our attention and impose on us a will to see what we can do, then I am not sure what will,” he said.

He called on community donors to join researchers to increase the pace of clear, clever and relevant work in confronting this disease for the benefit of all.