8th Edition – December 2019

Hello to you all! Here is our latest news…please share with all the people who are involved in your project, or anyone else interested!


Latest news


Some of you joined our ZOOM gathering (webinar) on Tuesday 3rd December (International Day of Persons with Disabilities). This focused on learning from, and with, the wider disability movement. It was hosted by our Advisor Tom Shakespeare.


There were 16 of us altogether, including people with dementia, and academics from the spheres of mental health, learning disability, dementia and physical disability (some also with ‘hats’ as service users/survivors).

The discussion was inspiring, encouraging and very informative. We will certainly use much of the learning in the Dementia Enquirers programme.

We also hope to follow up with a series of more specific webinars.

You can hear an edited recording here http://bit.ly/2P3tuh9


The monthly projects ZOOM gathering on Thursday 5th December focused on ‘what does it mean for people with dementia to be in the driving seat of research?” There were 11 of us in total, including Prof Amanda Lazar from the USA. We will be sending out some notes based on this discussion shortly.


Coming up


The next ZOOM for the Pioneers only is on Monday 16 December at 11.00 am by ZOOM.


The first ZOOM gathering of the New Year mainly for the projects will be on Tuesday 14th January at 11.00am. It will be hosted by the Thred group in Liverpool. They’d love you to come and share your progress with other groups (or if you can’t come, maybe send us a few lines to share?) Pioneers welcome to join too.


We are also starting work on a mini-project around ethics. On Wednesday February 12 we will hold a workshop in London, to discuss coproducing a new ‘Gold Standard’ for ethical dementia research. We will look at the feasibility of piloting an ethical approval process for the next round of Dementia Enquirers projects (from summer 2020). We’re keen to identify allies and supporters who can help with expertise, encouragement, training, promotion, articles etc.


The following day (Thursday 13 February) the Pioneers will meet to plan the processes for Cohort 2 (the next 10 projects which will start in summer 2020).


We are already planning the summer 2020 event for all projects and Pioneers and  several Advisors – to share learning from the first cohort of research projects. We have provisionally booked St Katharine’s Foundation in East London for Wednesday May 20 (arriving on evening Tuesday 19 May and staying overnight). Places for each group will be limited to 3, including support/facilitator. Invitations will go out early next year – but please hold the date in your dairy.


Belonging: there will be a discussion question in the January DEEP newsletter about belonging. We will then run a workshop to create a new measure.


If you have any queries, thoughts, inspirations or anything at all, please email Rachael at rachael@myid.org.uk or call her on 01392 420076.


We look forward to talking with you all again soon

And meanwhile, all best wishes for Christmas and the New Year

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