Here for a Cure: Hilary Evans-Newton, Chief Executive of Alzheimer’s Research UK
Challengers inherently have ambitions that outweigh their resources – a common problem amongst the non-profit sector too. Hilary Evans-Newton, CEO of the charity Alzheimer’s Research UK, spoke with eatbigfish about how employing the Challenger Mindset enabled the organisation to grow exponentially, helping them to develop possible treatments for a disease which could affect one in two of us.
You’ve been with Alzheimer’s Research UK for over ten years now and you’ve grown the charity massively. Can you tell us a bit about the organisation at the time you joined and what your brief was?
I joined Alzheimer's Research UK in the summer of 2013, initially as a director. I had been working for six or seven years prior to that at Age Concern and Age UK, so I'd worked on older people's issues across the board. And I was approached about coming in as one of the new leadership team of Alzheimer's Research UK.
Alzheimer's Research UK was a really small charity at that point, and they didn't have a senior leadership team, as such. The relatively new chair of our board, David Mayhew, came in and said – look, this organisation could do a huge amount in the dementia space. There's not another organization focused on research. And so they brought me in to lead all the external affairs. I'd also had family experience of dementia – all three of the grandparents I had ended up with different forms of dementia. I saw and lived through their experience and that stuck with me.
At the time, I think the conversation around dementia was always around social care, and it was around the reform of social care funding and the quality of social care. But no one was having any conversations about dementia being caused by disease. And I think for me, I was just trying to put all these parts of the puzzle together and say – actually, we need to tell a story about ‘What is Alzheimer's disease? What's dementia?’ The lack of understanding from the public was really clear.
But as soon as you started talking to people about medical research, that this is a physical disease - Alzheimer's disease causes dementia, and dementia is a set of symptoms; it's not an inevitable part of aging, then you could see people light up and think ‘Wow, I hadn't realized that.’
And that means that if we understand what's happening in the brain, like lots of other conditions and diseases, we can work out what's going wrong and how we can maybe fix it. But how do we start talking about this as a medical condition and medicalise it? And I thought – gosh, this organisation should be doing that. So, I came in as a director with that brief, and then 12 months down the line, I was then asked by the board to step up and lead the organization as the chief executive.
eatbigfish started working with you in 2016. What about the Challenger Mindset struck you as being particularly relevant to Alzheimer's Research UK, and why did you feel that you as a group needed to think more like Challengers?
We were a small organisation but with a big ambition and a really creative team. We had tiny budgets in terms of our ability to reach people and a relatively small organisation in terms of wider resource. So we already had those constraints there, but we also had the appetite and ambition to want to talk about things differently.
There was frustration from me and a number of the team of continuingly seeing and been told in the media that the narrative around dementia was ‘grandma losing her keys or struggling to make a cup of tea’. This still exists, but I think it's shifting. It isn’t necessarily the realistic view of what later stage dementia often looked like. No one was talking about this now being the leading cause of death. But at ARUK, we talked about dementia as being a devastating disease. We talked about the reality of what that looked like for the individual and for their families. And so, the initial appetite to want to work as a Challenger brand, and the issue we were working on, demanded that we be that kind of organisation. It gave us the clarity of how we would go about doing that.
So how then did you go about socialising this new Challenger thinking?
We tried to ensure people understood what we were doing and how we were doing it. I talked about your book The Beautiful Constraint and the work that you've done, and the majority of people were hugely excited by it - though probably not everyone, because it was a shift from where we were and who some people thought we were as an organisation. We were seen as a brand that didn't have any real positioning with the public at all. It was a niche scientific brand that had a great reputation with our scientific community, but the majority of the British public had never heard about Alzheimer's Research UK. We needed to move from being very scientific and staid, to having an ability to talk to the public about what they were going through with family or their loved ones. So there were some shifts internally that we had to do.
And I think the proof now in terms of what we've been able to deliver is certainly there, but at the early stage it was just ambition. It was quite scary to make that shift in terms of how we were operating and what we were funding, all the way through to how we talked about ourselves, and going out there with these quite punchy campaigns, which for a lot of people were a real shift in how we talk about the condition.
Walk us through the steps you took to make that shift in thinking.
One of the first things that we did was to understand where the public were. So, what did people understand about dementia? Did people understand it was caused by disease? Did they just think it was a part of aging? Did they think anything could be done? Because if they don't think anything can be done, they're not going to support medical research and a medical research charity, and we're a fundraising charity, so we need the support in order to fund the research. That work gave us the data that only one in four adults in the UK saw dementia as a disease. A majority of the British public just saw it as part of aging - nothing that we could do. So they're never going to support medical research because they don't understand the condition that we're trying to work on. So our premise had to be around awareness, and we had to think differently about how we talked about the condition. We needed to create a communications plan to put the organisation and the condition on the map.
And when it came to the research, we had had 20-30 years of failure, essentially. Clinical trials were failing year after year in neuroscience, but particularly in Alzheimer's disease and other dementias and I think the field were quite deflated. So it was also about making a shift there too. And now we are seeing the progress in terms of unlocking the potential from the scientific community by ensuring they had resource, but also by injecting that confidence in terms of our messaging, and putting the science and research centrally. And no organisation had done that before.
We are now about 10 years on from our initial brand strategy of, ‘we're here for a cure’. We started off trying to defeat dementia, and so that was our absolute campaign. We moved to making those breakthroughs possible. We're now here for that cure and actually delivering those treatments.
So what’s on the horizon now for you as a leader and for Alzheimer’s Research UK more generally? What’s still in the way of you accomplishing your big ambitions?
From an Alzheimer's Research UK perspective, we're now at the point where we've grown hugely as an organisation. But we're still not at the scale of being able to fund everything that we want to fund. When we first started working with eatbigfish in 2016 our income was around £15-16 million. Our income is now almost £60 million. Fantastic, but still not where I'd like it to be. Our current strategy runs to 2030, and I think we should be doubled in size in terms of our income and our reach.
The other challenge we've got as an organisation, in terms of the condition that we're working on, is that patients aren't currently able to access the first rung of disease modifying treatments, particularly in the UK. We need more effective treatments, and we need better diagnostics so that we can find those people who will benefit from the medicines that we have today, but also the medicines of tomorrow. So a big piece of work that we're doing at the moment is actually going out to our global scientific community, and saying, actually, in five- or 10-years’ time, what are the big scientific questions? What are some big nuts that we still need to crack? And how do we come together to fund them? There's no one organisation that can do it on their own. And we need to be doubling in size, at least in terms of our income, to be able to fund those scientific projects.
But the majority of the British public still don't know about Alzheimer's Research UK. They probably wouldn't be able to name a dementia charity, per se, but one in two of us will be affected by dementia, either we'll get it ourselves or be caring for a loved one with it. Yet, most of those people have never given money to a medical research charity for dementia. So, the opportunity for people to be able to support us is huge. But they can only do that if they know who we are, where we are and how they can get involved. There's still a level of misunderstanding about the condition. It's something that's really hard to talk about. But what I think we've seen is that ultimately, people want a charity that is here for a cure, because that's what we want to see. We want to see a world where people are free from the fear, harm and heartbreak that dementia causes, and that's been our strap line from day one. That's never changed.
As a leader, how do you help the organisation understand how it needs to show up in everything it does in a more engaging way?
Our attitude to all of our communications, and particularly our brand campaigns, is always showing dementia in a realistic light, but doing so in a way that is engaging, that's telling a story and making people stop and think and have a conversation about it. People switch off to a lot of charity campaigns. If it looks like it's a charity advert, people will often skip, switch off or pause, which you can do really easily these days.
So how do we ensure that we're bringing people into a story before they realise it's a charity film? Our ‘Share the Orange’ campaign with various famous people, including Samuel L Jackson, had them standing up there with an orange and talking about the surface of an orange and the segments of an orange. And then before you've realised it, the orange is the brain, and you're telling the story about what dementia does to a brain via an orange. Our most recent campaign ‘Change the Ending’ is using a fairy tale. It's using a cartoon, but it's trying to depict some of the probably more harrowing symptoms of dementia, which can be upsetting. It is not a dull film.
It has been quite controversial, but it's made people have a conversation about it. But actually, the majority of people who have been through this with their loved ones have come back and said, thank you for making this. We could have made a film that showed the portrayal of a couple going through dementia and there were a number of those films out there – some of them are beautifully done. Some of them have had great cut through but a lot of them look the same. It could be an end-of-life charity. It could be a cancer charity. And yes, ultimately, all of those experiences themselves aren't dull, but actually, for the public watching them, they've seen it before.
But the people that are living with this condition don't have a voice. The people who are looking after those people are all-consumed by looking after their loved one with a care system that often isn't delivering for them. So, it's our job to be flying the flag. We have to be communicating in a way that's effective in getting that cut through to people, and so we need to be really punchy about it. We need a different way of having that conversation.
