The PHA’s HSC R&D Division helps boost participation in dementia research

A nationwide online and telephone service that helps people to take part in dementia research studies launches in Northern Ireland today (23/09/15); during World Alzheimer’s Month. Join Dementia Research promises to accelerate the pace of dementia research in Northern Ireland by allowing people with and without dementia to register their interest in studies, and helping researchers find the right participants at the right time.

Northern Ireland’s Chief Medical Officer, Dr Michael McBride, said: "Northern Ireland participates in world-class dementia research through the work of the Northern Ireland Clinical Research Network and the programme of research in Dementia Care the Department has commissioned through the HSC R&D Division of the Public Health Agency, along with our funding partners, The Atlantic Philanthropies. We need people to take part in these studies to improve the future care of people with dementia. I am delighted to support this initiative and would encourage those living with dementia and their carers, as well as healthy volunteers, to sign up to Join Dementia Research.”

Dementia currently affects 850,000 people in the UK and almost 20,000 of those are in Northern Ireland. However, the wider impact of dementia is far greater, with 25 million of the UK population having a close friend or family member affected.

A recent national poll* has shown that almost two thirds of the general public (62%) would be willing to take part in dementia research, but more than four out of five people (81%) wouldn’t know how to volunteer. Join Dementia Research is designed to overcome this barrier and give everyone the opportunity to play a role in changing the outlook for people with dementia now and in the future.

The lack of access to willing volunteers is holding back critical research into the condition with government figures showing that only around 5% of people with dementia take part in research studies. Join Dementia Research will boost research participation by connecting people interested in research to suitable dementia studies across Northern Ireland and other parts of the UK, as well as streamlining the recruitment process for researchers. By signing up, volunteers agree to be contacted to take part in new studies getting underway in their area, from which point they can decide if they wish to take part.

Join Dementia Research is a collaboration between the National Institute for Health Research (NIHR), Alzheimer’s Research UK, Alzheimer’s Society and Alzheimer Scotland. Launched in England and Scotland in February and Wales in July, over 11,000 people have registered their interest in research studies through the service. Of those, more than 1,600 have already been enrolled into research.

Health and Social Care, Northern Ireland are supporting the rollout of Join Dementia Research across Northern Ireland. Eleanor Ross, Public Health Agency, who co-chairs the Northern Ireland Dementia Strategy Implementation Group with Seamus McErlean, Health and Social Care Board, said:

“Join Dementia Research has seen success in connecting volunteers to dementia research studies in England. We would like to emulate this success in Northern Ireland, giving people with dementia and their carers opportunities to take part in critical research into the condition”.

One of the studies recruiting for volunteers in Northern Ireland is called AFFECT, which is testing whether a commonly used treatment for high blood pressure can double up as a treatment for people with vascular dementia. Volunteers who are recruited to the study will take the drug or a placebo pill for a year and undergo memory tests and two brain scans to monitor their progress.

Professor Peter Passmore, from Queen’s University Belfast, is conducting this research and using Join Dementia Research to recruit volunteers. He said:

“I am delighted that the Join Dementia Research initiative is now to be available in N Ireland. Dementia of whatever type, is caused by neurodegenerative diseases and at present there is no cure. There is a need for research into a great number of aspects of this condition. This will involve studies in people with dementia, their carers and also comparative studies with people who are not affected by any memory loss.

For over 20 years I have been involved with research into this condition and the advances in our understanding of the diseases involved has improved significantly. Local people, with and without dementia have been very good in terms of their participation in our studies. Join Dementia Research will enable people to sign up to facilitate further research and from the researcher aspect this will greatly enhance our ability to recruit people and further expand our understanding of all aspects of dementia.”

Gordon Kennedy, from Belfast, who cared for his wife with dementia, said:

“During her illness, I supported my wife, Phyllis, through her participation in several clinical trials at Queen's University, under the supervision of Peter Passmore and his team. This experience has led to my involvement as a Research Volunteer with the Alzheimer's Society for the past 12 years.

Getting involved in research is so important to getting a clearer understanding of the condition and the devastating impact it can have on families. I would definitely encourage others to get involved too.”

The joindementiaresearch.nihr.ac.uk website offers a secure and easy way for someone to register their interest, discover studies that interest them, and ultimately connect with researchers to take part in their studies.

Anyone aged 18 years or over can sign up themselves, or on behalf of someone else, either by registering online or by contacting the helplines of Alzheimer’s Research UK (0300 111 5 111) and Alzheimer’s Society (0300 222 1122). By signing up to the service, people give permission for researchers to contact them with details of studies in their area that match their profile. People can then decide if they would like to participate in those studies on a case-by-case basis. By registering, people do not have to take part in any studies and can opt-out at any time.