Dr Jane Rowley
In 2018, I started to work with Trent Dementia to investigate what people living with a diagnosis of Dementia in Nottingham might want to share about their experiences.
The charity had been running an assistive technology website and wanted to develop some work that would be led by people living with a diagnosis. The trustees were interested in learning about how best to support people and asked me to speak with people at different stages of their lives since diagnosis.
Ultimately, we formed a small core group to plan an event that would be designed and led by people with a diagnosis. We decided together to call this ‘Life with Dementia – What Matters to Us’ and the day was based on the journey from Diagnosis to planning for end of life.
The event ran on November 14th 2018 in Nottingham, a series of short presentations written by each core group member and smaller conversation rooms where people could share experiences with an audience of 100 people. This blog will share the experiences of the people involved in their own words, what this work means to us all, what we learnt and how we plan to continue this work.
Our first blog comes from Steve Litchfield — who led the conversation on Diagnosis and ‘The Penny Drops’ at the event.