I had intended to write about day 2 at the end of day 2, but the ‘social programme’ stretched on to the small hours…I’ll come back to that later. So here I am catching up in the first break on day 3 (with some strong coffee).
Putting Research in to Practice was the theme for the first talks of the day, starting with a mixed picture of successes and failures in the field of drug development. I learnt the names of a couple of new treatments in early stages of development, including a vaccination approach using CAD106, and the rather ambitious injection of nerve growth factor in to specific brain regions – an approach attempted before but complicated by serious side effects. However, the session was dominated by the EPAD (European Prevention of Alzheimer’s Disease) project led by Simon Lovestone. I heard of EPAD a couple of years ago, so it was great to hear that this highly ambitious project has succeeded in bringing together academics and multiple drug companies to build a cohort of people at risk of developing Alzheimer’s disease in order to run rapid drug trials.
In fact, I was so intrigued by the EPAD project I went along to their lunchtime seminar to hear more. They are using an innovative trial design called an adaptive trial where multiple drugs are compared at the beginning of the trial, but like horses falling at fences, only one drug will survive to the end of the trial. One important challenge debated at some length was that the trial design might be too innovative for the regulatory bodies who licence medicines, they will have to be involved early if any successful drug will reach the clinic. It was good to see a medical sociologist has been employed on the project to address the ethical issues of labelling people with ‘at-risk for’ or even ‘pre-symptomatic’ Alzheimer’s disease.
The dementia strategies session after lunch highlighted the differences between individual countries in persuading politicians to prioritise dementia. This ranged from Norway where the health minister attended sessions to include people with dementia in designing a health strategy, to Ireland where the future of the health strategy hangs in the balance pending next year’s general election. In this session our Young Leader’s
Global Dementia group took the floor to outline what we do and propose what future dementia strategies might include, such as local focus groups, taking research beyond beta-amyloid and harnessing technology to educate people with dementia and their carers and to monitor health.
At the end of the day was a topic I wanted to learn more about: post-diagnosis support. It is no accident that the session was dominated by Scottish speakers, where post-dementia support for one year is standard via a named link person. Norway are close behind, where a dementia team aims to follow-up and arrange regular visits for all people with dementia in their own homes. In the UK and other countries we have a long way to catch up, but the beauty of meetings like this conference is sharing experiences so that these successful ideas can be copied across Europe and further afield.
And that was the end of the main conference for the day. The 6 members of the Young Leaders Global Dementia working group sat round a table at a local restaurant, ate good food, downed a couple of local beers and thrashed out some ideas. A little project we’re going to have a go at is to ask people in our own countries three short questions about dementia, video the results and put it all together in a short film. Hopefully we can use the results as a snapshot of peoples’ understanding of dementia and to raise awareness of our Young Leader’s group and dementia more generally. Watch this space!
After sampling some more of the local beverages we headed off to Metelkova, an area of Ljubljana described as an ‘alternative epicentre’ where people seem to chill out, chat, and even do a little fire breathing. It was great to meet and talk to a Slovenian medical student and visual artist about what it means to be a doctor. So, it was rather later/early when I eventually got back to the hotel. A chilled out end to a packed day.