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Attendees were asked what they are most looking forward to about the conference over the next few days and you can watch their replies below:
Dr Richard Walley gave the official welcome to country on behalf of the Nyoongar people and said to attendees in his traditional language.
“I want to give presenters an ability to articulate messages in a clear manner and those who receive the message ability to pass it on and share,” said Dr Walley who also passed on a message stick to the conference which was accepted by two attendees.
The first presenter, Elizabeth Gelfand Stearns, is one of the co-producers of Still Alice and advocate for the Judy Fund which has raised over $5 million for dementia research in the USA. Elizabeth has a personal connection to the disease with both her mother and grandmother having lived with the condition.
She spoke about how Still Alice was designed to shine a light on Alzheimer’s disease, however it wasn’t an easy process to get to the publicity is has today. The original book by Lisa Genova was rejected by 35 publishers and eventually Ms Genova made the decision to self-publish. After being read by a few key people including Elizabeth, it soon became a NY times best sellers. Since then it has been published in 45 languages and, as many of us know, has been turned into a major Hollywood movie which has won over 23 prestigious awards.
She told the delegates the take home message from Still Alice, and what attracted Julianne Moore to the leading role, was to create a story of self, humanity and struggle.
“We now want to use the movie to help move the cause forward, like Philadelphia did for HIV and A Beautiful Mind did for schizophrenia.”
Dementia News reviewed the movie Still Alice in episode 25 of its podcast series which you can listen to here. You can also watch this short interview with Elizabeth, who speaks more about her personal connection with Alzheimer's disease
Graeme Samuel, Alzheimer’s Australia National President also welcomed the delegates to Australia and the conference. In his opening speech he said that he welcomes the current investment of $200 million by the current Australian government and hopes to see this funding increased in future years.
“Research in the areas of prevention, detection and potential treatments are vital but just as important as building capacity in the research sector and bringing our best and brightest minds into the field.”
A major highlight of the opening session was Edie Mayhew and Anne Tudor who shared their experience of Edie’s journey from pre-diagnosis through to diagnosis with Younger Onset Alzheimer’s disease.
“Early detection and advice is very important” said Edie, after telling the attendees it took more than five years from first noticing memory problems to receiving a proper clinical diagnosis from a neurologist.
She continued by talking about the importance of the Alzheimer’s Australia Younger Onset Dementia Key Worker program, which has provided them with support and services specific to their need. They also welcome more research into LGBTI experiences of living with dementia.
Developments in risk reduction
Professor Martin Prince from the Centre for Global Mental Health at Kings College London spoke about dementia prevention and care in an ageing world.
“It is our role to synthesise global evidence for policymakers and the public in a way that is both digestible and evidence based,” said Professor Prince.
He and his team have undertaken large systematic reviews to find all of the available robust scientific evidence to create these reports. Their reports, which now include research in languages other than English, can be found on the Alzheimer’s Disease International website - http://www.alz.co.uk/research/world-report.
He also reported on evidence showing that the prevalence of dementia is similar among both low and high income countries – reiterating that there are currently 46 million people in the world today who are believed to be living with dementia. This once again emphasises that it really is a global problem that requires global action.
Developments in diagnosis
Dr Serge Gauthier, Director of the Alzheimer's Disease Research Unit, Université de Montréal, Canada gave a brief overview of the latest science in diagnosis and treatment.
He spoke about how amyloid brain PET imaging is the current gold standard for the detection of Alzheimer’s disease but unfortunately these types of imaging techniques aren’t available out of a research setting and not easily accessible to the public. He also mentioned how developing effective diagnostic techniques are important for prevention and treatment studies so that researchers can be sure of who is participating in their trials.
A separate session on dementia diagnosis saw two researchers focus on developments in retinal eye imaging to detect Alzheimer’s disease before symptoms occur. The full media release can be found here.
Associate Professor Lad, was one of the international researchers presenting on this topic, who stated a provocative hypothesis which suggested that Alzheimer’s disease might possibly be linked to eye diseases as well, since many people with Alzheimer’s disease share eye problems with those who do not have a diagnosis.
The current eye imaging technology both A/Professor Lad and Dr Mojtaba Golzan (AADRF research fellow) are working on is considered to be a window into the brain with Dr Lad saying:
“It is non-invasive, fast, high resolution and tells us what we need to know.”
In this session we also heard of developments in the analysis of Alzheimer’s disease biomarkers in the blood and cerebral spinal fluid. Both of these projects are still in the very early stages and more work is required before they can be implemented in a clinical setting.
Development in treatments
The conference touched on the latest developments in the area of treatments but the key message here was that we are really a long way off having a disease modifying drug or cure for dementia in the near future.
The consensus from the researchers who presented on protecting neurons (i.e. the brains cells) and the removal of pathological markers is that while the research is showing some promising results, there is still a long way to go.
Associate Professor Shyh Jong-Hu from Taiwan put it simply at the end of presentation saying:
“Our current evidence is suggesting we might need to look into personalised medicine, and it is highly unlikely we will find a one size fits all approach in the near future.”
Other sessions looked at innovations in dementia care, dementia friendly communities, education and awareness.
One of the sessions focused on how far we have come in just over 30 years, it was exciting to hear that yes we have come a long way in the form of awareness, education and reducing stigma.
Daisy Acosta from the Dominican Republic and ex-chair of Alzheimer's Disease International, referred back to a video she watched from 20 years ago which asked people on the street ‘what is Alzheimer’s’ – with one person answering “a baseball player.” Suffice to say we would certainly get some different answers today, with a World Dementia Council set up to tackle this very issue, which you can read more about this here. All in all the future of a world without dementia is certainly looking brighter.
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