Dementia Research Action Group Launch

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A group for people with lived experience of dementia, to help shape dementia research across is launching on 28th May 2024 in Greater Manchester.

The Greater Manchester Dementia Research Action Group – Our Network, (DRAGON), established with Greater Manchester Integrated Care Board and Dementia United, will be a voice for those with lived experience of dementia, to shape the direction of dementia research.

The Great Nave at Gorton Monastery is not only a magnificent space but is also dementia friendly, with the availability of quiet spaces and extra support throughout the day. The agenda will include accessible presentations from leading dementia researchers, specifically focusing on their work with diverse communities, members of the public and people living with dementia.

There will also be opportunities to explore a range of research, community engagement and support opportunities through interactive stalls and networking sessions throughout the day.  This includes a visit from Liverpool Museum’s House of Memories, the first-ever immersive mobile museum experience in the UK, especially designed for people living with dementia. 

The launch event is supported by the University of Manchester Teams Build Dreams Team Research Programme. Sign up here.

Members of the public living with or caring for someone living with dementia are invited to join our researchers on 28th May, to come together, share their experiences and to learn more about the developing DRAGON network.

It is estimated that there are close to a million people currently living with dementia in the UK. In January 2024, there were more than 30,000 people aged 65 and over, estimated to have dementia in Greater Manchester (GM). Of those, 21,897 have been formally diagnosed and added to the dementia register, making the dementia diagnosis rate for GM 73%.

In 2022, dementia was the leading cause of death in the UK, accounting for over 74,000 deaths (11.3% of all deaths) in the same year. Only research can change this.

New clinical treatments are now coming to the fore which, for the first time, have been shown to alter disease progression. We are also building a better understanding of the care and support necessary for those living with a diagnosis to remain connected to, and active within their communities. These advances suggest that positive change for people affected by dementia may be just around the corner.

Unfortunately, public interest and involvement in dementia research remains stubbornly low.  Indeed, less than 2% of those living with dementia in Greater Manchester have registered an interest in being part of research through the NIHR Join Dementia Research platform. This is a major concern since the success of dementia research relies on the involvement and participation of those affected by dementia. Without research, services won’t improve.

Active engagement with research, researchers and health and social care professionals also offers a meaningful platform for those living with dementia or caring for someone living with dementia to feel heard, valued and to shape the research process.

Jag, Patrick, and Ruth have all been affected by dementia and are founding members of DRAGON.  They are part of a team which includes project management from Dementia United and researchers from the University of Manchester.

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.

Jag said:

“We are carers by experience and it’s essential our lived experiences are central to research which can influence the decisions of policy makers. Especially regarding communities, such as my own South Asian community, who suffer from inequalities in resources and support.

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.”

Patrick said:

“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.

I hope that having representation from someone like myself, will give strength to others, opening the door for them to step up and to carry on my work and continue to fight for our rights and our representation.”

Ruth said:

“Young Onset Dementia is not always recognised and affects the person living with Dementia and their family enormously.  Research is invaluable in determining why younger people become affected by dementia and I am happy to be part of the DRAGON programme.”

Dr Claire Lake, Deputy Chief Medical Officer, NHS Greater Manchester said:

“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.”

Research fellows (Dr Sarah Fox, Dr Emma Elliott, Dr Sarah Smith, Dr Jaheeda Gangannagaripalli) at the University of Manchester said:

“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.”

Ruth Norris, Teams Build Dreams co-lead said:

“We are delighted to be able to provide support for DRAGON’s inaugural community event through our microcatalyst fund and look forward to hearing all about it!”

For more information contact:

sarah.kirkland@nhs.net or sarah.fox-3@manchester.ac.uk

* Part funded by a micro-catalyst award from the University of Manchester’s Team Research programme and by the NIHR and Alzheimer’s Society, as part of the DEM-COMM programme

Published 10/05/2024