‘I saw a massive opportunity for what this organisation could be’: Hilary Evans-Newton on transforming Alzheimer’s Research UK

Hilary Evans-Newton learnt about life’s vicissitudes while still a teenager, when her father contracted cancer in his late fifties, forcing him into premature retirement, a close school friend died from meningitis and all three of her living grandparents were diagnosed with dementia.

As her grandmother’s confusion took hold, “[she] thought that my dad was actually her husband, my granddad”, Evans-Newton recalls. “I used to visit [her] and paint her nails red in the care home because that’s the one thing that just made her feel wonderful. Those moments stayed with me.”

This first-hand exposure to the ravages of dementia turned out to be key in shaping Evans-Newton’s professional life: as chief executive of Alzheimer’s Research UK, she now leads the biggest funder in Europe of research into the causes of, and potential treatments for, dementia.

Evans-Newton, once a rather shy, outdoorsy girl who had dreamt of becoming an Exmoor ranger, marvels at how far she has travelled: “I wasn’t particularly confident as a teenager. So the idea I would one day be in a job where I’m doing media interviews or standing giving speeches to hundreds of people is completely foreign.”

After university at Exeter, Evans-Newton worked as a researcher for a Labour MP, who later became a minister, and did a stint in a private public affairs company where she gravitated towards the firm’s pro bono clients. Realising the charity sector was her natural home, she joined Age Concern, later helping to oversee its merger with Help the Aged to become Age UK.

Many of the elderly people whose cases came her way had dementia and Evans-Newton became increasingly dismayed by the lack of a national push to find treatments. “Any other sort of health condition . . . we’d be talking to [people living with the disease] about what treatments might look like, we’d try to . . . give them some sort of hope.”

So when she was approached to join ARUK in 2013, initially in an external affairs role, she felt an immediate sense of mission.

At the time, dementia was still a diagnosis that lurked in the shadows. Many scientists had retreated altogether from dementia research, frustrated by years without a breakthrough. The charity had an annual income of just £10mn and possessed neither a strong campaigning voice nor a prominent role in nurturing cutting-edge science. More than a decade on, under Evans-Newton’s leadership, income has risen to about £60mn.

Last year, her expansive vision reached its climax in the organisation’s new “For A Cure” campaign that unambiguously associated it with the prospect of vanquishing Alzheimer's, which is one form of dementia.

Evans-Newton says navigating the transformation has required self-belief and a willingness to “be my own champion”, as she set about profoundly changing ARUK’s purpose and message. “I’ve had to find an inner confidence in terms of knowing that my . . . direction of travel has been the right one. That inner confidence has given me a kind of outer confidence to be able to . . . front the things I fronted and talk to the people that I regularly talk and work with.”

The conversation on dementia started to shift around the time Evans-Newton joined the charity. Terry Pratchett, the fantasy writer, had gone public with his own dementia diagnosis, and also donated $1mn to ARUK, a gesture that had “put Alzheimer’s Research UK on the map”, she says.

The organisation had acquired a dynamic new chair, David Mayhew, then vice-chair of JPMorgan’s global investment bank, and the UK prime minister at the time, David Cameron, had launched an initiative to make the country a world leader in dementia care. “I just saw a massive opportunity . . . for what this organisation could be,” says Evans-Newton, who became CEO a year or so after joining.

She and two other senior appointees were charged by the board with coming up with a new corporate strategy. But there was a steep mountain to climb. “I came into an organisation that was probably smaller than my team at Age UK”, with an overall budget not dissimilar to the one she had previously enjoyed for a single department. “I wouldn’t say it had a voice. Very little kind of recognition or influence.” 

Under her aegis, three institutes were established, combining the tools of commercial research with the expertise of UK academia. Through these, and other initiatives, ARUK has become “the largest charitable funder of dementia research in Europe [and] one of the big players globally in dementia research”, she says.

She notes that in choosing to highlight the message that Alzheimer’s can be cured, she was influenced by another charity, the NSPCC, which 25 years ago unveiled its “Full Stop” campaign promising to end child cruelty. Evans-Newton suggests that, while that aim may never be fully achievable, it set a level of intent and ambition she wanted to mirror in her own charity. 

She insists that, in adopting this approach, she was going with the grain of what the charity’s staff and supporters wanted. “Internally, [there was] huge amounts of support for it.” People living with dementia and their families also wanted to see this “really confident bold messaging . . . [They said:] ‘This is exactly why we’re giving you money. This is why we are campaigning and supporting and volunteering,’” she adds.

Evans-Newton suggests she is a natural collaborator. “This hasn’t just been me, this has been a brilliant team of people”, a number of whom have been with her throughout her tenure as CEO. She has also benefited from “a really supportive board. I think it’s understanding the power of my team within the organisation, but [also] the power of that broader network, that’s helped me deliver,” she adds.

She rejects a suggestion that her decision to pledge a cure risks raising false hopes. Two drugs have now been discovered to ameliorate symptoms if given at an early stage by clearing amyloid plaques that build up in the brain and are seen as a principal cause of Alzheimer’s. However, both come with significant side effects.

Evans-Newton acknowledges this first generation of disease-modifying drugs “aren’t the best drugs in the world and they won’t work for that many people. But actually we’ve got a proof here that we are treating one of the underlying causes of Alzheimer’s disease . . . We need to now march forward to have much more effective treatments.”

Beyond her role as a leading advocate for those living with Alzheimer’s, she has sought to influence societal perceptions in another way. As part of a rising generation of younger, female charity chief executives, she has been keen to challenge attitudes that can make it harder to combine professional and family life.

Evans-Newton, who has two sons and a daughter, all younger than eight, recalls attending a big dementia conference in London shortly after the birth of her first child. She decided to take him into meetings, leaving his pram parked behind the ARUK stall in the conference exhibition hall. When she returned to collect it, she was told: “‘Security confiscated your pram because under-18s aren’t allowed in’ and a big burly security guard came up and literally started to escort me out of the building.”

Other working mothers who witnessed the contretemps, along with some supportive male attendees, rose up in her defence and it proved to be a watershed: the annual event, one of the biggest global Alzheimer’s conferences, now always offers a crèche and new mothers’ room.

It is the same instinct to challenge and to propel change that she is deploying in the fight to tame dementia. “I’m quite a competitive person . . . [and] I drive my team a bit mad sometimes, because I’m always thinking about the next big idea, where we want to take things.” Sometimes she is advised to slow down, to allow initiatives to bed in. “But I think it’s my role to be that cheerleader for the cause and for the organisation, and then to be able to build a brilliant team around me who can really help deliver it.”