Chief Scientist calls for more research volunteers

With the publication of Scotland’s new dementia strategy, the government’s Chief Scientist for Health, Professor Anna Dominiczack says it is now an important time to help make life-changing discoveries – encouraging Scots to volunteer for research into progressive brain conditions.

The Scottish government’s new dementia strategy, Everyone’s Story, sets out a 10-year vision for delivering evidence-based treatment, care and support.

While the strategy recognises the slow pace of clinical research in Scotland and worldwide for medicines to slow the progress of dementia or improve experiences of symptoms, it also highlights the rising number of people living with dementia.

Over the next 20 years, estimates show a 50% increase in the number of people over 65 living with dementia, with some projections suggesting one in three people born today will go on to develop dementia.

Keen to see this addressed, Scotland’s Chief Scientist for Health, Dame Professor Anna Dominiczak, says the strategy serves as a reminder of the importance of new discoveries and the need for volunteers to take part in research trials:

“With the number of people in Scotland with dementia expected to double between 2011 and 2031, the release of the new dementia strategy Everyone’s Story is a timely reminder that whilst advances have been made through research, we must do more.

“Scotland has a proud history of pioneering medical discoveries, and we have a vibrant community of researchers undertaking important inter-disciplinary research to help advance our understanding of neuroprogressive diseases and potential new treatments, but volunteers must come forward to work with us and help researchers make vital breakthroughs.”

Lived experiences

NHS Research Scotland Neuroprogressive and Dementia Network (NRS NDN) supports a wide range of research studies within the NHS and care home settings, with last year’s annual conference centred on listening to voices of experience in research.

Dr Terry Quinn, NRS Ageing Clinical Lead, says patients’ and their families’ desire to get as much information as possible after a dementia diagnosis led to the development of a more inclusive approach of the network.

The NHS Research Scotland’s the Partners in Research initiative offers people the chance to get meaningfully involved and even shape research proposals.

Clinical Research Champion for Dementia and Neurodegenerative Diseases, Dr Tom Russ, says cutting-edge research into dementia and neuroprogressive conditions continues apace in the NHS right across the country:

“It is very much a joint endeavour. We have teams in health boards across Scotland, we work closely with university colleagues, charities including Alzheimer Scotland, care homes across Scotland, and importantly people living with dementia themselves – both as volunteers taking part in research, but also those people with lived experience of dementia (both people with a diagnosis and their supporters) who offer a wealth of insight in shaping our research.

“Together, we accelerate vital clinical research to improve the outcomes of patients and their families living with a diagnosis of dementia.”

Network Manager Dr Emma Law says research can “unlock a better future through life-changing discoveries”, adding:

“We want everyone to be offered the opportunity to take part in research and to make it easy to discuss and understand the different options available.

“To aid this, we’ve developed Confident Conversations training with Alzheimer Scotland and Brain Health Scotland to help staff have positive, informative chats about research with the people they support.”

Earlier this year, Martin Robertson who lives with dementia, made the case for care home research and making those with lived experiences partners in research.

Clinical research

A participant who took part in a clinical research project, a postgraduate trial at Ninewells Hospital into disease-modifying monoclonal antibody (mAb) treatment for Alzheimer disease says they had a very positive experience taking part in research:

“Staff are friendly and supportive but also take you through all of the tests for the condition that you would get in a specialist clinic. They also involved my partner which helped her to understand the condition too, which she found reassuring and gave her a sense of what she might do to help.”

NRS Ageing Clinical Lead, Dr Terry Quinn adds:

“We are not just focused on working to recruit patients into studies; we are making sure the research we are delivering here in Scotland is collaborative, inclusive and innovative, drawing on a rich tapestry of knowledge and insight.

“It’s an exciting time for research into conditions that affect older people, and Scotland is leading the way. The recent launch of the Scottish Funding Council’s Brain Health Alliance, is just one example of the innovative approaches we are taking to tackle ageing related problems – moving beyond clinical silos such as ‘dementia’ to progress important research around the broader concept of lifelong brain health.

“We have made tremendous gains in our understanding and treatment brain health but there is still so much to do, and we can only continue to make progress if people take part in our research studies.”

This article was contributed by the editorial team at healthandcare.scot