Collaboration key in bringing dementia research into the community
- Credit: Copyright: Archant 2016
Collaboration is key as some of the leading experts in dementia studies are seeking to join up local services and organisations to provide an holistic approach to the disease. In the final day of the week-long series investigating support for dementia, DOMINC GILBERT speaks to the pioneers in research.
There is perhaps no stronger collaboration than a marriage - which unites two University of East Anglia professors as they study the effects of dementia before and after diagnosis.
Michael Hornberger, professor of applied dementia research, is tasked with identifying the signs of dementia, while Eneida Mioshi, professor of dementia care, specialises in post-diagnosis support.
The couple are now six months into a project called TRACC - dementia research and care clinic, in conjunction with the NHS Norfolk and Suffolk Foundation Trust.
And a new app launched by Professor Hornberger to gather data on navigation skills among healthy people now has more than 600,000 subscribers.
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Both have identified a real vacuum of research to help people living with dementia post-diagnosis.
'We often compare it to when people have their first baby, with everything focused on the birth and the pregnancy, but you get home and think what are we going to do now?' said Prof Hornberger.
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'We still need to figure out how people really develop post-diagnosis and how to deal with that within the health services. 'People are diagnosed with a very specific dementia service, then get discharged and left with their GP, who is already overstretched. For families it is very hard to find the right support. They are only brought back in when there is a very real crisis.'
As part of the project, the couple are trying to reach out to the community and join up the gaps between health services by sharing research.
'Our goal is to bring research from the university to the NHS Trust, into public health policy and down to the GP level with best findings,' added Prof Hornberger. 'For the patients we try to predict what challenges they were likely to face in the future. In terms of drug development nobody is talking about a cure and there is no silver bullet, but there are trials at the moment which indicate in the next 10 years we will have drugs that can slow down or stop the disease. The problem there is people will not die any more but they will have chronic diseases that need to be managed.
'Health services are stretched already and that is why we are very interested in doing research into prevention of crises. Once they come into A&E they are in the system, which is a very different prospect than a family environment at home.
'We always compare ourselves to cancer research, and we are lagging far behind. Dementia costs the UK double what cancer does, and gets eight times less money than cancer research. There is an enormous discrepancy.' Prof Mioshi said one of the biggest funding issues is the lack of research into people living with dementia post-diagnoses.
'Most of the funding or support has gone towards the diagnosis phase and our understanding of how the brain changes,' she said. 'The post-diagnosis phase is also clinical, so we are trying to build more people who have the capacity to do research.
'One helpful thing to manage research is having a more integrated approach in that managers from clinical care services, because it becomes natural with people in the care environment who are already contributing.
'Carers are running the show, and they will feel conflicted in trying to seek more support. It is difficult for many of them to admit they are struggling, and there is not much care support out there.
'One of the challenges for us in the next few years is measure better how different types of dementia have different trajectories.
'Crisis comes at a certain point and that is probably the point of no return. Often that could be prevented and everyone wants a solution at home. The majority of people want to keep them at home where they can be enabled and supported, but at the moment we wait for a crisis before we take action.'
The team are organising a series of public meetings demonstrating every aspect of dementia, and need both those living with dementia and healthy people.
The next is on June 16 at 2pm at the UEA.
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