Sunday, 26 October 2014

The 24th Alzheimer Europe conference - October 2014, the first real-life meeting of #demphd

Had a wonderful, inspiring and motivational time at #24aec as we called it on Twitter.  My great friend Shibley Rahman has written a brilliant blogpost all about it, which I won't match in either quality or quantity here.  But I do want a record of the highlights for me so I will not lose track of the actions I will take as a result.

Firstly you go to conferences to meet people in person 'networking' as it is now called.  This is very inspirational in itself.  It used to be people you had only read their work in books, now it's people who've you've read in books, read their emails and tweeted with and even the odd one or two Facebooked or Linked -inned.  We literally had a ball at the 'Gala Dinner'.  It was our friend's birthday so the staff made it very special by bringing out a cake and the whole room erupted into singing 'Happy Birthday'.  I had some lovely chats.

I may be a bit different to most people - I don't get much out of the 'plenary' sessions.  There was a great talk on how human rights should be applied to people with dementia in the huge hall. But I did find, perhaps not with that talk, with 800 people in a room in front of you there are too many distractions and I find myself gazing around wondering if it will be fresh coffee in the break.  No, the true inspiration comes from the smaller sessions when you can get eye contact and question the speaker without technological assistance.

Following the end of my PhD studies, I have found myself with a passion for wellbeing and dementia, so I was very drawn by three presentations in particular.  Jane Youell was the first such presenter, her work was on sexuality, intimacy and living with dementia. Helen Irwin then explored humour and dementia.  Kirsty Patterson covered personal growth and dementia.  I am determined to follow these up and refer to their research.  I was and am excited again!

Art and dementia was an inspiring session too, as was ethics.  'It's complicated' was what I learned about the application of ethics.  I find that my views are often cemented in this way at conferences. 

Perhaps the most intriguing and questionable session was sponsored by the 'Institute for the Scientific Information on Coffee' and yes, you've guessed it, coffee 'proved' to stave off dementia.  By this time I was so desperate for coffee I didn't bother to ask the question 'how much is the Institute of Coffee paying you to say that.?' After my education earlier, my ethical stance felt suitably justified.  But seriously, one person did ask the question about the side effects of coffee and the speaker had the tenacity to say they weren't proven.  Well not by the Institute for Coffee anyway. 

Lastly and by no means least we had the first in-real-life meeting of #demphd, the international Twitter network that myself and Julie Christie set up nearly two years ago, that we have written about and appears to go from strength to strength.  The summary of what we need to do to improve it over the coming months and years is: plan better in advance (get hosts booked weeks rather than minutes in advance), make the website better (put out tweets on it for example), cross fertilise with Facebook and Linked in, make sure we are focusing on the research aspect to topics, where the research gaps are, have a clear focus, good outcomes.  We need to ask the prominent journals if they want to cohost, we need to tweet from conferences.  In short we need Terms of Reference and a Business Plan.

No rest for the wicked!  And the next big thing is the Dementia Congress which I must book onto this week.  See you there!


Friday, 17 October 2014

A year since Mum died

It is a year and a day since Mum died and I know that she would be so proud of me today.  I can officially announce that I have started work with the Alzheimer's Society - their Training and Consultancy arm - as a Dementia Trainer.  Mum had breast cancer, not dementia though.  The care and services she got towards the end of her life were outstanding, particularly the hospice care.  It is this sort of service and care that I want to see for everyone at the end of their lives which is why I am so enjoying my new roles, as I am in a privileged position being able to train people about how we can help people with dementia live well with the condition.  I am not just working at the Alzheimer's Society as this is a part time temporary role but also working for myself, as a consultant, on the latest research on social media, co-production, innovation and quality.  I do hope though that my relationship with the Alzheimer's Society is a long and fruitful one - together we are stronger is my belief.

Thank you for your support...

Next week I am going to the Alzheimer Europe conference where for the first time I will be meeting the inspirational Julie Christie who has helped me so much over the past two years. Karen Watchman, Clarissa Giebel and Nathan Davies will be there - great contributors to the phenomenon that is #demphd on Twitter, that myself and Julie set up nearly two years ago.  I will also be meeting Caroline Bartle, another incredible innovative whirlwind, another tweep that I now consider a true friend, she knows me so well - we are staying in the same place so hopefully those creativity juices will get going and we'll be changing the world together! 

There are a lot of people that I need to thank who have been there for me through this difficult decade, who would not like their names published on the internet.  But I am thanking you now - you know who you are.  And with your support and despite the problems, health issues, deaths and hiccups we have achieved, together, quite a lot.  Long may life continue!