New dementia strategy is a reminder of the importance of continued research, says Chief Scientist
It is an important time to help make life-changing discoveries by volunteering for research into progressive conditions affecting the brain, says Scotland’s Chief Scientist for Health.
With the recent publication of a new strategy, entitled Everyone’s Story, the Scottish Government has laid out “a positive, shared vision for dementia in Scotland over the next 10 years.”
It recognises that whilst clinical research in Scotland and globally is producing medicines to slow or modify symptoms of dementia, projected estimates show a 50 per cent increase in the number of people with dementia over 65 over the next 20 years, with some estimates suggesting 1 in 3 people born today will go on to develop dementia.
Reflecting on the new strategy, Chief Scientist (Health) Anna Dominiczak said: “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.”
NHS Research Scotland Neuroprogressive and Dementia Network (NRS NDN) supports a wide range of research studies within the NHS and care home settings. Last year over 1,000 volunteers took part in studies – with network activity returning to pre-COVID levels.
This national work sits alongside the Scottish Government’s ongoing commitment to service improvement, modernisation and innovation – in all areas including primary and community care, care homes and hospital and specialist dementia NHS in-patient care. The new strategy will also try to ensure that everyone has ‘equitable access to post diagnostic support irrespective of factors such as the person’s age, disability, ethnicity, residence and ability to use technology to engage with support’.
Dr Tom Russ, clinical research champion for dementia and neurodegenerative diseases, said: “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 said: “Research can unlock a better future through life-changing discoveries.
“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.”
One research participant who took part in the Postgraduate trial at Ninewells Hospital into disease-modifying monoclonal antibody (mAb) treatment for Alzheimer disease said: “I had a very positive experience taking part in the research. The 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.”
There are a number of ways for participants to get involve in research via the Neuroprogressive and Dementia Network. To register interest in participating in neuroprogressive or dementia studies – with no obligation to take part in anything – members of the public can contact the team or sign up online via www.nrs.org.uk/dementia
By signing up to Join Dementia Research, people give permission for researchers to contact them with details of studies in their area that match their profile. By registering, people do not have to take part in any studies and can opt-out at any time.
NRS Ageing Clinical Lead, Dr Terry Quinn, said: “A dementia diagnosis inevitably means lots of questions for both patients and family. They’ll want to get as much information as possible – from planning for the future and how to handle the emotional impact, to getting the best treatments and accessing the right support.
“With all of that in mind, the Neuroprogressive and Dementia Network has developed a really inclusive approach to research. The Partners in Research initiative aims to offer meaningful involvement of people with lived experience of neuroprogressive conditions and dementia, allowing research proposals to be shaped around them. 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.”
The Neuroprogressive and Dementia Network can be contacted by email on TAY.email@example.com or by telephone on 01382 423086.
The Network is funded by the Chief Scientist Office of Scottish Government. It has grown from four centres in Grampian, Greater Glasgow & Clyde, Lothian and Tayside to now cover the whole of mainland Scotland.