Guest blog: Dementia Action Week 2019 | Taking the next step together
This article has been reproduced from the National Institute for Health Research (NIHR) blog.
Professor Martin Rossor
NIHR National Director for Dementia Research
We are fast approaching five years since the publication of the Dementia 2020 Challenge, which set the ambition to make England the best country in the world for dementia care, support, research and awareness.
Reading the Dementia 2020 challenge: Phase 1 progress review, it is remarkable to see the progress made to date. Importantly, we can now look beyond 2020, understanding international priorities for tackling dementia by 2025 (WDC Defeating dementia: the road to 2025).
Over the last few years, there has been significant investment in dementia research in the UK. We’ve come a long way in building our research infrastructure and improved collaboration between initiatives. While there have been disappointing results from some recent studies, there are many other studies that build on the knowledge gleaned from unsuccessful trials.
Why we need dementia research
Here in the UK, the Dementia Attitudes Monitor, published by Alzheimer’s Research UK in January, served as a reminder of why research is important to improving the lives of people affected by dementia. Members of the public identified cures and prevention as their priorities for research, and those with experience of dementia also highlighted a need for research into improving care. The monitor showed people would be prepared to undergo diagnostic tests for dementia at an early stage, if we can develop less invasive techniques such as eye scans and blood tests.
The good news for researchers, who are critically dependent on volunteers to take part in their studies, is that 50% of those who responded to the survey said they would be willing to participate in research studies. Some of the key challenges that remain are how we help those people find studies to participate in and how we raise awareness of what research can involve – a key barrier identified in the report for many of those who currently don’t want to take part.
Improving coordination between researchers
As a result of the Dementia 2020 Challenge, a number of initiatives supporting public participation and involvement in research have successfully been developed. In January I convened a workshop to review the overlaps and gaps between several UK dementia research registers. Our aim was to ensure that members of the public can access information about the many ways in which they can contribute to dementia research. Join Dementia Research was identified as the best service through which we can signpost opportunities, as a national publicly accessible service that provides genuinely informed consent.
Beyond the scope of clinical research, I recently attended the first meeting of “Dementia Ecosystem UK”. This is a new collaboration which will bring together the major UK dementia research initiatives working across the research pathway, from those investigating in the lab to those working with the public to see which treatments provide real benefit. The aim is to create a joined-up community so we can accelerate research and ensure that there is a strong pipeline of potential new treatments.
All healthcare professionals can help accelerate research for patient benefit
Over 40,000 volunteers have already registered with Join Dementia Research but we need more people affected by dementia to sign up. To do this we need to spread the word to those affected by dementia.
It has been heartening to see the importance of research being recognised in the post-diagnosis pathway for people with dementia over the last year. Research is now included in both the NICE Guidelines (Dementia: assessment, management and support for people living with dementia and their carers), and in NHS England’s Dementia: Good Care Planning Guidance. Additionally, new SNOMED codes are available which will enable clinicians to log any conversations they may have with patients about dementia research.
A simple tool to give you the confidence to talk about research
Join Dementia Research is the easiest way for health and care professionals to meet the recommendations set out in these guidance documents. Trusts have been working very hard to embed Join Dementia Research in their routine practice but we acknowledge the need to support health and care professionals to talk about research with patients and their families.
For this reason, the NIHR has developed a simple online learning tool. Taking just ten minutes to complete, it is designed to help healthcare professionals understand why dementia research is important for their patients, and how talking about Join Dementia Research can help them deliver best care according to clinical guidance.
Everyone has a part to play
As we near the end of the Dementia 2020 Challenge, I reflect on how far we’ve come and how much more we need to do. What remains clear to me is that each of us, whether as researchers, members of public or health and care staff, has a role to play in progressing research into dementia.
- Trusts and healthcare professionals can access the Join Dementia Research learn tool at any time. The module takes just ten minutes to complete.
- Anyone aged 18 and older can register with Join Dementia Research and choose to take part in studies they match to on a case-by-case basis.
- Researchers can see if their study can use Join Dementia Research to find study participants.
Dementia Action Week runs 20-26 May 2019