Reaching out to dementia patients and carers about research

A new initiative to find people willing to take part in dementia research, is being rolled out by Coventry and Warwickshire Partnership  Trust, working with the  Clinical Research Network West Midlands (CRN WM).

Building on the success of a project with Birmingham Memory Assessment Service, Jacqueline Smart,  Join Dementia Research Lead for the CRN WM, together with the staff from the Alzheimer's Society JDR Helpdesk, has been working with Clinical Psychologist Dr Claire Pavlou and her team to approach attendees at the Trust’s Next Steps groups to see if research is something they know about.

Jacqueline said: “Experience has shown us that speaking to people in person about dementia research and the opportunities it offers, is by far the best way to generate interest in the many studies that are taking place.”

Working in partnership with the Alzheimer’s Society, the JDR helpdesk  established  contact with interested patients or carers referred from the Next Steps  groups. They then discussed the idea of participating in research,  talked about the types of studies people could get involved in and register people over the phone if they wished to be signed up to JDR. The help desk then provides ongoing support for using the service .

The society is a founding partner of the JDR service and was keen to get involved. The result is a streamlined system allowing people to be contacted at their convenience, rather than eating into group time.

Jacqueline added: “This scheme has been a great success, resulting in an increase of 111 sign ups since we started.”

Dr Pavlou added: “Our service users have told us how much they appreciate the chance to find out more about research and we are planning to extend the initiative to groups in Rugby.”

 Sharon Boulter,  Alzheimer’s Society JDR  Helpdesk Lead said: “This extra step in the process of informing people about the opportunities to be involved in dementia research has been incredibly successful and resulted in an increase in registrations of people affected by dementia.  It is a privilege to be working in partnership with Claire and colleagues who all  share the same enthusiasm and passion about getting involved in vital dementia research.  “

Once registered on the service, the Join Dementia Research helpdesk team can get instantaneous feedback about potential research opportunities. 

Sharon said: “For some callers, we can see straight away that they have potentially matched to an ongoing study or trial, and we can talk  about that specific piece of research with them.

“It’s so empowering for people when they find out they can take part in the research. It makes them proud that they will be helping people in the future. They realise they have so much to contribute.”

For further information on JDR please visit https://www.joindementiaresearch.nihr.ac.uk

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Contact:  Claire Hall, Communications Lead: claireanne.hall@nihr.ac.uk