Shelagh speaking at the event
Designed by people living with dementia, for people living with dementia
George Rook and Shelagh Robinson have been working for the last eight months with Trent Dementia charity to organise a conference devised, facilitated and deliver by people living with dementia. One aim was to encourage people living in Nottingham to speak up, and to kick start at least one DEEP peer group.
A hundred people came, half of whom were affected directly by dementia. We heard some desperate stories from care givers who could not access support or benefits, and variations on a theme of lack of post diagnosis support.
We also heard from people who value dementia cafe groups really highly, as well as many who dislike activities organised for them.
Shelagh chaired the day and led a discussion about preparing to die, while George led discussions of the support and services available in Nottingham.
This was a fantastic meeting because it was all about people affected by dementia, attended by, but not lectured by, professionals. We will be writing a report about it and how others can organise similar events elsewhere.