They are part of a national group of researchers - DEM COMM funded by the NIHR ARCs and the Alzheimer's Society to carry out dementia research over two years. 

They arranged a collaboration of both the ARC's palliative and end of life care theme and social care theme to lead in developing a community partnership network with a wider research team and Patient and Public Involvement (PPI) members. The initial setup of this network was generously funded by ARC South London’s Involvement Fund.  

Asian couple doing a puzzle - photo from the Centre for Ageing Better

Photo: Centre for Ageing Better image library. 

This network aims to bridge the gap between people affected by dementia from minority ethnic backgrounds and researchers working on dementia studies.  People affected by dementia from minority ethnic backgrounds are underrepresented in public involvement in research. Olivia and Annabel have been working with community partners in south London supporting people affected by dementia to strengthen inclusive and diverse involvement in research.

 

We initially conducted a co-production workshop with community partners to discuss the aims of the network and how to utilise it effectively and collaboratively. Since then, we have held online meetings about the shaping of the network. Each meeting has provided valuable input and collaborative opportunities for community partners and the research team. For example, community partners have asked for research discussion in their meetings, or events where researchers attend and discuss PPI or the network in more depth.

Annabel Farnood and Olivia Luijnenburg

The main aims of the network, co-created with community partners, is to create a safe and engaging space for people affected by dementia to be involved in research and subsequently, to better represent people affected by dementia from minority ethnic backgrounds in dementia research. 

Read more about the DEM COMM programme.