Stats released today, Tuesday 3 July 2018, show that over 10,000 study participants have been involved in vital dementia research thanks to the innovative Join Dementia Research service from the National Institute of Health Research (NIHR).

This fantastic news comes in the wake of new guidance released by NICE in June 2018. This guidance encouraged health and care professionals to inform people with dementia how they can get involved in research studies.

Thank you to all the volunteers, researchers, champions and partners who have given their time to help beat dementia.

Today’s figures mark an important milestone for Join Dementia Research. Launched back in February 2015 in response to the then Prime Minister’s Challenge on Dementia, the success from the last three years can be seen by participants and researchers alike:

 

Wendy Mitchell (participant)

Wendy, 62, was diagnosed with young-onset dementia in 2014. Since then she has taken part in a number of research studies, including the PRIDE study, which looks at how people can best maintain their independence in the early stages of dementia, as well as other studies looking at potential treatments.

 

“Being involved in research makes me feel valued. When you’re diagnosed with dementia there’s not a lot you can do but develop coping strategies to outmanoeuvre the disease. However taking part in research makes me feel as though I’m doing something which might help stop my daughters feeling the same inevitability a diagnosis currently brings. And research doesn’t just mean clinical trials. Social research is equally important for finding the best ways to live for those of us already diagnosed.

“There is currently is no cure. Without willing volunteers to try out new ​research into how best to live and care for those unable to care for themselves, there will continue to be no cure and no best practice. Taking part in research is my way of feeling useful again and contributing to finding that elusive treatment which in turn will create a better world for my children.”

Dr Sahdia Parveen (researcher)

Dr Parveen, Senior Research Fellow at the Centre for Applied Dementia Studies in Bradford and Principal Investigator, lead the Caregiving Hope study.  This study involved two groups: family carers of people with dementia, and volunteers who had not yet become a carer for a relative. Each group was asked to complete a survey, exploring feelings of obligation, preparedness and willingness to care, and the wellbeing of those already in a carer role.

For part of the study 170 participants were needed to complete the questionnaire, but within 36 hours of Dr Parveen opening the study in December 2017 more than 600 people had expressed an interest. Thanks to this overwhelming response on Join Dementia Research, 1,100 ultimately took part – well over the original target.

“This tremendous response to our study could not have been achieved without Join Dementia Research and the people willing to give up their time and take part. Only with research can we take steps forward in the fight against dementia, but that research can only happen with willing volunteers.”

Martin Rossor (NIHR National Director for Dementia Research)

“I’m delighted that over 10,000 people are now involved in vital research studies through Join Dementia Research. With 850,000 people in the UK living with dementia, research offers the best chance of understanding what causes the disease, developing effective treatments, improving care and hopefully one day finding a cure.

“The more researchers and volunteers that Join Dementia Research brings together, the more studies can reach their potential and make a difference, so let’s keep up the momentum and make sure everyone knows that this opportunity is available to them.”

Get involved

With new studies being added to Join Dementia Research every week, researchers are constantly seeking more participants. Sign up today to find a study that you can take part in.

Register online or call one of the charity helpdesks:

  • Alzheimer Scotland: 0808 808 3000
  • Alzheimer’s Research UK: 0300 111 5111
  • Alzheimer’s Society: 0300 222 1122