“Growing old is not for wimps”. This is the comment my grandfather made to me when he learnt that my research was looking at Alzheimer’s disease. Subsequently, as I started to speak more openly about this research topic to the public, a member of the audience piped up: “You know you are getting old, when every new sensation is a symptom”. This gallus humour typifies the Scottish spirit, something that can seem to be so bleak can always be given a light-hearted response.
In this article and follow-on ones from colleagues, I have some good news: things are starting to change, as we enter a new era, as described in the Scientific American article ‘New Age of Alzheimer’s Scientific American‘. In this 84-page special edition, which has the likes of Bill Gates and the Davos Alzheimer’s Collaborative giving their thoughts, only one country is mentioned specifically, and that is Scotland (p72-74). This is because it was the first country to develop a national strategy where every person who has Alzheimer’s has a minimum of one year’s support from a named caregiver after diagnosis. But it also highlights how the Scottish community of academia, charities and government organisations are trying to work together, not in competition or in isolation.
Twenty five years ago, I created my own research group in St Andrews where I started to apply the biochemistry that I had previously learnt to try and understand and potentially treat Alzheimer’s disease, though using a different approach of combining biology, chemistry and physics. A lot has changed in the last 25 years and progress is being made on all fronts.
Dementia is the umbrella term, covering many different neurodegenerative diseases mainly affecting the elderly but also – as I recently found out – the young, termed “Childhood dementia” (Alzheimer Scotland). In the field, clinically there is a lot of discussion about the use of the “D” word, but it is a term, whether correct or not, that the population has heard about, including the prisoners I have taught in HMP Perth and Shotts. Twenty five years ago there was little mention of these diseases. When I was a new lecturer, I quickly came to realise that working on these diseases was about more than just raising funds and publishing papers – it was also the fact that it was affecting everyone. Indeed in 2008, 13 of us put our names to an open letter to the then Health Minister Alan Johnson saying that this was a group of diseases that could not be ignored.
Slowly new funds started to appear. David Cameron’s first initiative brought in some more funds, £50 million, but as I commented in my inaugural lecture, though welcome, this level of funding was the equivalent of paying for one new building in St Andrews (no one in it, just the building). However, then the Dementia Research Institutes came to the fore, so new research funding started to trickle in, and though still chronically unfunded there is movement in the right direction. It was helpful, too, that celebrities and famous people started to openly discuss their experiences. For example, I was in the audience when Terry Pratchett announced his diagnosis, and I played a small part in Sally Magnusson’s very personal best seller “Where Memories Go”.
A unique aspect to Scotland is its size and the interconnectedness of its Institutions. Exemplars of this in the academic world are the “pooling initiatives”: discipline-led initiatives that seek to join up the universities’ prowess. I was the Deputy Director of Scottish University Life Sciences Alliance (Home – SULSA, and recently and specifically mentioned in the new 2025 Scottish Government Life Sciences Strategy Growing a £25 billion industry – gov.scot) which helped in the formation of the European Lead Factory and the National Phenotypic Screening Centre. Helping each other like this is a unique Scottish trait, indeed the initial application for the highly successful Edinburgh Dementia Research Institute was supported by neuroscientists outside of Edinburgh: an approach that you don’t find in other countries. In addition, Alzheimer’s Scotland oversaw the formation of the Scottish Dementia Research Consortium (SDRC), bringing all dementia research under one roof. This is turn led to the Scottish Funding Council-funded Brain Health Alliance for Research Challenges (BRAIN HEALTH ARC). And from these endeavours have come funds to help in particular early career researchers such as the RS MacDonald Charitable Trust and the Scottish Funding Council-backed Scottish Neurological Research Funds, now in their fourth round.
Bringing people together is important and is an undervalued skill. The St Andrews Brain Health Summits, which attract major stakeholders from industry, government and charity funding agencies, academics, policy-makers and politicians, are another example of colleagues putting aside potential institutional biases and strategies to come together to tackle the big problems practically. These summits have led to new data challenges and even the launch of new companies such as Scottish Brain Sciences (Scottish Brain Sciences).
Scottish dementia research has blossomed, with many world class and leading groups in our institutions. But there are areas that desperately need help. It is a frustrating fact that many ideas within universities are not capitalised on, whether that be new drugs or new technologies. But ideas are coming forward. For example, a £10 million scheme to fund the “killer experiment” indicating biological efficacy that normal routes will not fund. This fund would lead to new companies and so to high-quality jobs; and possibly the development of a Scottish Wealth Fund which has been the backbone of many other countries. We need to reduce the bureaucracy and develop companies. We can do it, as successful companies have been built from scratch (for example Exscientia, a Dundee spinout was sold last year for $688 million, putting it into the “Soonicorn bracket”). I would also advocate the idea of a neuroscience industry pool (along the lines mentioned above). These steps could help build a world-leading community.
Clinical trials are also a priority for Scotland and the new £100 million Commercial Research Delivery Centres are wonderful to see (NHS Research Scotland), as are new business ventures such as Scottish Brain Sciences which boasts the fastest recruitment of participants ever recorded, and new drug trials underway that would not have occurred without a new approach.
However, for most of us who have had to personally deal directly with this disease with loved ones, the care aspect and how to deal and manage it, is the rawest. My mother’s own diagnosis was met with her usual phlegmatic comment of “Well the best thing I can do is to remain calm”. But my family were lucky as we had the contacts and financial ability to make my mother’s last few months as comfortable as possible. The majority of Scots do not have this luxury. So what can we do in dementia care?
The first is to recognise the true scale of the challenge. The usual quote is that 90,000 people in Scotland have dementia. However, this is apparently based on non-Scottish data, and so the reality is that it is probably a significant underestimate as many cases are not recorded, and most people are being cared for by family and friends. It is estimated that to look after patients with advanced dementia will cost £100K per person, which even using the underestimated number, leads to an eye-watering bill of £9 billion per annum!
The community and government recognise that a new approach is required and so many of us from a wide number of different backgrounds of academia, governmental agencies, charities, entrepreneurs and hands-on experience are now working to solve this hardest of problems, and to develop practical ideas, not just strategies without actions.
I detect a willingness coming from all political spheres, as this is an issue that effects everyone. Following this article will be other like-minded colleagues who will provide their own perspective on the challenges and solutions. And Scotland is leading the charge. As quoted by the Global Alzheimer’s Platform, we are the “Goldilocks country”: not too big, not too small, just the right size. Many of us believe that we can use Scotland as the blueprint for other countries. That is a human and scientific prize worth fighting for.
Frank Gunn-Moore is Professor of Molecular Neurobiology at the University of St Andrews and is an academic and researcher in the field of neurodegeneration and dementia research.