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Spreading the word about dementia research

Specialists in the field of dementia research, healthcare professionals with an interest in the field and people with lived experience gathered for an online event on Tuesday, 9 November.

The event, 'Spreading the word about dementia research', was hosted by the NIHR Local Clinical Research Networks (CRNs) in Kent, Surrey and Sussex, North Thames, North West London and South London, and attended by more than 80 people.

Dr Lauren Huzzey, NIHR CRN North Thames’ Specialty Lead for Dementia, spoke about the importance of dementia research and the best time to introduce research to patients. Lauren, who is involved in dementia research as a principal investigator, said that evidence shows that research-active hospitals have better patient outcomes and memory clinics are particularly well-placed to approach patients about dementia research. She added that research is not as daunting as it may seem and encouraged healthcare professionals to consider getting involved.

Eleanor van den Heuvel, Research Fellow at Brunel University, London, presented findings from a study that looked at what living well with memory problems meant for Black and South Asian communities. Eleanor shared some findings demonstrating how the experience of ageing among Black and South Asian communities differs from the perspective of a White British person. Three themes emerged, including cultural differences that lead to feelings of discomfort and disorientation, longing to return to home country and influences of racism and past experiences of discrimination.

Ruby Ali shared the perspective of a carer and a research participant. Ruby, whose mother was diagnosed with Alzheimer’s and vascular dementia in 2015, first heard about the Join Dementia Research service at an Alzheimer’s Society conference. She signed up to Join Dementia Research and participated in a number of studies, including Eleanor’s, appreciating the flexibility some of them afforded. She felt she needed to impart her experience and research seemed to be a good way to channel that. Ruby said caring for someone with dementia was an emotional and lonely journey and speaking to someone like Eleanor who is genuinely interested in her experience felt cathartic.

Andrew Rutherford, Join Dementia Research Senior Programme Officer, spoke about the service and presented the new callback feature. It allows new users to request a callback if they want to register by phone, have some questions about their account or want more information about the service.

Dr Barbora Silarova, Research Associate at the Personal Social Services Research Unit, University of Kent, showed some examples of trials that successfully used Join Dementia Research to achieve their recruitment targets. The service provides researchers with access to thousands of potential volunteers who want to be involved in research.

Tom Freeth, Research Team Manager at the Barnet, Enfield and Haringey Mental Health NHS Trust and Dementia Research Champion and Join Dementia Research Coordinator at NIHR CRN North Thames, gave an update about open Join Dementia Research studies across the four regions.

Robert Pleass, Research Delivery Manager at the NIHR CRN North Thames, said:

"It was great to get together and we thank all who joined us to learn more about both the importance and breadth of dementia research taking place in London and the surrounding areas."

Reuben Lewis, Research Delivery Manager at the NIHR CRN North West London, said:

"This event showcased the great work taking place in dementia research across our region and beyond.

"We hope the expert knowledge of the speakers will benefit all those who attended going forward, allowing them to get more involved in dementia research and helping to spread the word."

Neha Modha, Patient and Public Interaction and Engagement Manager at CRN South London, said:

"It is estimated that one in three people in England will be caring for a person with dementia in their lifetime, so it was great to see a carer's perspective prominently featured at the event. Ruby was very open about her experience of caring for someone with dementia and she shared some really valuable insights."

Madeline Bell, Patient and Public Involvement and Engagement Lead at NIHR CRN Kent, Surrey and Sussex said:

“Only through research can we fully understand the causes of dementia to develop new treatments and potential cures that improve the quality of life for people with dementia. This event gave insight into some of the fantastic research taking place across Kent, Surrey, Sussex and London that hopes to do just that; highlighting our shared commitment to make things better for people with dementia.”