Text message campaign boosts sign-ups to Join Dementia Research in the South West

More and more people across the South West are benefiting from involvement in research after an innovative partnership with GPs saw sign-ups to the Join Dementia Research volunteer service increase tenfold in the last financial year.

Thanks to close links between the National Institute for Health and Care Research (NIHR) Clinical Research Network South West Peninsula (CRN SWP) and the region’s primary care providers, a pilot scheme to text patients with an invitation to sign up was a major success in Cornwall, Devon and Somerset.

The data, released in time for Dementia Action Week (May 15^th -21^st) shows more than 1,500 people registered with the service in the South West in 2022/23, up from fewer than 150 in 2021/22. Although the continuing COVID-19 pandemic will have affected registrations at this time, last year’s total still more than doubled the previous high from 2015/16. The South West saw the highest number of sign-ups last year, compared to any other part of the country.

Data also show that across the country, the route by which volunteers found out about Join Dementia Research in 2022/23 was predominantly via a GP practice, and this increased dramatically when the text pilot began.    

Dementia is one of the biggest health challenges society faces, and around 900,000 people are currently living with dementia in the UK. This is estimated to increase to 1 million by 2025, and to 1.6 million by 2050.

Our knowledge of dementia currently lags behind that of other major conditions, such as cancer or heart disease. It is only through research that we can understand what causes dementia, develop effective treatments, improve care and work towards finding a cure, but for research to progress more people are needed to take part in more studies.

The Join Dementia Research service connects registered volunteers with dementia researchers across the UK who are looking for people to join their studies. Once registered, the service matches studies and volunteers, who can then decide whether they want to find out more.

Taking part in a research study can take many forms. Examples include studies looking at prevention or new ways to diagnose the condition; drug studies trialling new treatments; and surveys aiming to improve the quality of life for people with dementia and/or their carers.

Tania Crabb, Senior Research Associate at the CRN SWP led the text pilot in the region, and said she was “absolutely thrilled” it had been so effective. Tania said: “The thing I'm most pleased about is that it's been most successful for people with dementia, who can be quite difficult to reach. I’m really pleased that we've opened up so many opportunities for those people.”

As to why the region had been so successful, Tania believes it was the close working relationship and trust that already existed between primary care and the Clinical Research Network locally. She continued: “I like to think it's on the back of many years’ hard work engaging and working with GP practices, as a result of which they know and trust us, so I was that known and friendly point of contact.

“But also, it was a relatively easy thing for them to do, and GP's really want to help with this patient group and can see the benefit. Another part of my work is engaging new practices in research, and we have successfully got some practices up and running with Join Dementia Research. It's a nice project to start them off with research, and it can show real value.

“We have had some studies that have used texts to engage patients, but this has been the largest project like this that I'm aware of.

“It’s also worth saying that it's an ongoing project, and we'd be absolutely thrilled for further practices to sign up.

“I really want to thank the practices for their response to this. It is their hard work that has made it such a success, and we really appreciate their contribution to research.”

Join Dementia Research is run by the National Institute for Health and Care Research (NIHR) in partnership with Alzheimer Scotland, Alzheimer's Research UK and Alzheimer's Society. Visit the website for more information: https://www.joindementiaresearch.nihr.ac.uk/