Stepping inside a brain health clinic
Try explaining to a five-year-old what a policy professional working in dementia does, and you won’t get anywhere – I know, I’ve tried. But when I showed my son a picture of me wearing scrubs, ready to spend a day with scientists and research volunteers at the Oxford Brain Health Clinic, his interest was suddenly piqued. He loves dressing up and he loves science. Now that I was talking to him in his own language, he was full of questions.
Since working at Alzheimer’s Research UK, I’ve come to realise it can be just as difficult to get grown-ups to understand and engage on the topic of dementia, particularly the importance of making sure every person in the UK living with dementia can receive an early and accurate diagnosis.
The key is finding an approach that frames the issue in a way that’s meaningful to them. That might be stark statistics and blunt comparisons, or it might be someone telling their own story, bringing the problem to life.
What is a brain health clinic?
Of the leading causes of death, dementia is the fastest rising health condition facing the UK, with numbers set to increase to over 1.6 million by 2050. But there aren’t yet any treatments available in the UK that can slow or stop the diseases that cause it.
But there is hope – global efforts to develop disease-modifying treatments have accelerated in recent years and significant progress is being made. One challenge that still needs to be solved, though, is the fact that it’s very difficult to diagnose the specific cause of someone’s dementia early enough to match them to suitable research opportunities or clinical trials.
Brain health clinics are a new health service model trying to improve the diagnostic pathway so people with mild cognitive impairment and dementia can receive an earlier, quicker, and more specific diagnosis. Not all brain health clinics are the same – some focus on seeing people much earlier than they might be seen in the current system, some focus on personalised risk reduction, and many are integrating clinical assessment and research.
What is Oxford’s approach?
The Oxford Brain Health Clinic is approaching the challenge from two angles, and I was fortunate enough to recently spend a day with the team there to learn more.
Firstly, they are conducting research into diagnostic imaging and fluid-based biomarkers to diagnose earlier, and with greater accuracy, so it’s easier to pinpoint the exact cause of a person’s dementia.
Secondly, they are working hard to increase participation in clinical research by streamlining the sign-up process and making it much easier for people to take part. When someone arrives at the clinic, they get the same clinical tests they would need in a hospital or specialist memory assessment service, but they can also take part in research (e.g., an extra brain scan or a saliva sample) as part of the same visit.
What I found most striking was the passion and ingenuity of the staff. On the day I was there, someone arrived for an assessment with a significant speech impediment. A lack of join-up between health and care records within the NHS meant the staff weren’t aware in advance, and the cognitive test favoured by the clinic wasn’t designed to accommodate a speech impediment.
Undaunted, it didn’t take the staff long to find a solution, and the key to that seemed to be a mix of the drive to help someone that a clinical mindset brings and the willingness to experiment and innovate that a research mindset brings.
Why is Alzheimer’s Research UK working with brain health clinics?
To break a problem down and articulate it clearly, you need to understand it. Spending time with the team at Oxford gave me the chance to really understand how brain health clinics are trying to solve some of the challenges we face in diagnosing dementia, what their strengths are and how to identify, and head off, any unintended consequences of the model.
Our work with this project has allowed us to collaborate with other emerging brain health clinics across the UK. At a workshop in June, clinicians and researchers from a range of established and emerging brain health clinics got together to share their experiences. Using our policy expertise, we were able to help frame those experiences in terms of which policies and governance structures are helping or hindering their work, and what needs to change.
What will the impact be?
You may be thinking, if a dementia treatment became available tomorrow, could our existing health system deliver it to those who need it? The simple answer is “no”.
Right now, we can’t diagnose people early enough and accurately enough to identify who would benefit from a new treatment, and we don’t have the physical or workforce infrastructure within primary care or memory assessment services to deliver a new treatment and monitor patients’ progress.
Brain health clinics could be an important part of the solution, and Alzheimer’s Research UK is here to support them.
We will continue to work closely with emerging brain health clinics to help them articulate the measures and support they need to thrive – that might be additional investment or workforce expertise to support the implementation of novel diagnostic tools. We can help frame these calls for change in a meaningful way that will help to galvanise action from policy makers and government.
I feel incredibly passionate about this work and look forward to what the future holds for brain health clinics – after all, they could one day support the delivery of life-changing treatments to people with dementia.