Latest stats, released today, show that 10,000 study participants have been involved in vital dementia research thanks to an innovative service run by the National Institute for Health Research (NIHR). This news comes in the wake of new guidance released by NICE in June 2018, encouraging health and care professionals to inform people with dementia about how they can get involved in research studies.
Currently it is estimated that 850,000 people in the UK are living with dementia, and the only way to find new and better ways to treat and care for those affected by the condition is to do more research. When asked, 62% people in the UK would be willing to take part in dementia research, but 81% said they didn’t know how to do this. Join Dementia Research works to fill this gap.
Join Dementia Research was launched back in February 2015 in response to the then Prime Minister’s Challenge on Dementia. The service aims to accelerate dementia research by making it easy for members of the public to find out about studies they may be able to take part in and helping researchers find the people they need for their studies.
Working like a matchmaking service, members of the public simply register with Join Dementia Research with some information about themselves, and they can then be contacted when suitable studies open in their local area. After contact with the research team, these volunteers can decide whether or not they want to take part in a study, choosing on a case-by case basis. There are lots of different types of research. Studies can include anything from latest drug trials to surveys trying to understand how to improve quality of life for people with dementia and their loved ones.
Today’s figures mark an important milestone for Join Dementia Research. The success from the last three years can be seen by participants and researchers alike:
Wendy Mitchell, 62, was diagnosed with young-onset dementia in 2014 and has taken part in a number of research studies, including the PRIDE study, which looks at how to best enable people to 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 and 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, 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 well-being 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.
Dr Parveen said:
“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.”
Professor Martin Rossor, NIHR National Director for Dementia Research, said:
“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.”
Dr Laura Phipps from Alzheimer’s Research UK said:
“Alzheimer’s Research UK is extremely pleased to support Join Dementia Research, and it is fantastic to reach this milestone of 10,000 volunteers recruited to vital dementia research studies. Volunteers both with and without dementia play an essential role in helping researchers to understand the causes of disease like Alzheimer’s and driving improvements in diagnosis, treatment and care. We are incredibly grateful to everyone who has participated in a research study and helped to provide hope to those affected by dementia today and in the future.”
With new studies being added to Join Dementia Research every week, researchers are constantly seeking more participants. Sign up to Join Dementia Research today to find a study that you can take part in:
Register online at https://www.joindementiaresearch.nihr.ac.uk/ or call the Alzheimer’s Research UK infoline on 0300 111 5111