Over fifty people affected by dementia recently joined Dementia United and the University of Manchester at Gorton Monastery for the launch of DRAGON (dementia research action group – our network).

The event aimed to showcase this new network and we invited people affected by dementia to join. It was co-developed by researchers and people with lived experience of dementia and funded by the University of Manchester Teams Build Dreams team research programme and the NIHR and Alzheimer’s Society, as part of the DEM-COMM programme.

The new DRAGON network will meet regularly and enable people from diverse communities with lived experience of dementia to share their stories, shape dementia research and advise researchers across the city.  Following the launch nine people immediately signed up to join DRAGON.

We’re still interested in hearing from anyone living with dementia or previous or current carers who would like to get involved. 

To find out more or just have an informal chat about your interest in dementia research, email sarah.kirkland@nhs.net

Guests enjoyed a range of different research, community engagement and support opportunities through talks, interactive stalls and networking sessions.

There was also a visit from Liverpool Museums’ House of Memories, the first immersive mobile museum experience in the UK, especially designed for people living with dementia.

 

 

 

 

 

 

Keynote speeches from Karan Jutlla & Jag Brar-Orgill (Equality, Diversity & Inclusion in Dementia Care: The Experience of Ethnic Minorities) and John Hammond & Daithi Clayton (LGBTQ+ Inclusion in PPI), were powerful, informative, and often shocking.

“We are carers by experience and it’s essential our lived experiences are central to research which can influence the decisions of policy makers.  Dementia doesn’t discriminate but services can. Culturally appropriate inclusive and representative voices matter, we want to be heard and we want to shape the future”.  Jag Brar-Orgill

Event host Patrick Ettenes, founder member of DRAGON, spoke movingly about the lack of care for people who live alone.

“I’ve been advocating for myself and my community for over 10 years. I’ve worked tirelessly, often putting the needs of others above my own, but now the time has come where, as my condition deteriorates, I need these services myself.   I stand here, open, and outspoken, as a person from the LGBTQ+, ethnic minority and non-binary trans community. I stand with the hope that my voice, my fight, will usher in the change we need”. Patrick Ettenes

 

 

 

Research can revolutionise the way we diagnose, treat, and prevent dementia.  DRAGON will help everyone affected by dementia in GM to access the benefits of  dementia research through awareness, involvement, and participation. Dr Claire Lake, Deputy Chief Medical Officer, NHS Greater Manchester

We are strong advocates of co-producing research with people with lived experiences of dementia. Our vision for DRAGON is to create a group that has representation particularly from underserved communities. We are looking forward to learning from the group to ensure we are conducting research that matters most to them, and so we can understand the diverse needs of different groups to overcome barriers to engagement in research. Research fellows (Dr Sarah Fox, Dr Emma Elliott, Dr Sarah Smith, Dr Jaheeda Gangannagaripalli) at the University of Manchester