Telling the story of the UK's biggest killer
A StoryTeller interview with Charlotte Matier, from the Alzheimer's Society
Dementia is the UK’s biggest killer. And telling the story of dementia is one of the hardest and most important tasks that exists today in social impact storytelling.
Fortunately, at The Alzheimer’s Society, there are some exceptional StoryTellers grappling with the challenge.
Working with them has been one of the highlights of the last year at LookUP, as they look to grow and improve on every front - from how they tell the story of dementia, to how they pitch to partners, to how they build the confidence of their whole senior team to tell compelling stories to their many audiences.
So, in our latest StoryTeller interview (and the first of a new series digging into storytelling for charities, not-for-profits and purpose-driven business) it was a delight to talk to Charlotte Matier, Associate Director of High Value Fundraising and Legacies at Alzheimer’s Society.
Charlotte will be one of our panellists at our free London event on May 21st, on which there are more details at the end of this piece.
But first, let’s dig into the ground we covered in our interview with Charlotte - you’ll see a couple of clips in the article, and then the full interview (about 40 minutes) is at the bottom. It’s full of brilliant insight for anyone operating in this space - or indeed anyone who feels they are storytelling into a headwind.
Telling the Story of Dementia
Like more and more of our generation, dementia is an ever-increasing presence in our own personal lives. It quietly devastates families, overwhelms care systems, and yet remains one of the least understood public health crises. As Charlotte, puts it: “When we went through our first experience of dementia as a family, we didn’t understand it. It really took us to the brink.” I’m sure many of our readers feel the same.
Confronting this issue as a society depends on dementia cutting through as a problem with so many different audiences - donors, policy-makers, the scientific community, the media, corporate partners. But it also requires a sense of hope, of unity, and of progress.
These are the things that make storytelling such an essential hard skill. But the Alzheimer’s Society really are blazing a trail - with highly engaging documentaries, exceptional brand partnerships, hard-hitting advertising.
In our interview, we explored how the Society has made progress in terms of all of our three key stories:
FutureStory. Creating a compelling future vision of dementia, against the odds.
CultureStory. Unifying the threads of story within the charity to empower storytelling.
SellingStory. Landing the story with different audiences in a way that creates agency.
Future Story: Problem, Solution, Progress.
For a long time, the story of dementia has felt bleak - no cure, limited treatment, and overwhelming complexity. But Alzheimer’s Society has learned that progress in storytelling, like in medicine, begins by staying with the problem long enough to help people believe in the solution.
The balance between no-holds-barred realism and optimism is the core to how the Society now tells its Future Story. Some audiences found the organisations previous vision statement, “a world without dementia,” unrealistic or alienating. Instead, the new positioning, “It will take a society to beat dementia,” reflects a broader vision of progress, including treatment, care, diagnosis, and day-to-day support.
“That shift helps people feel they can invest in something that has short-term results,” Charlotte says. “Not just a distant dream.”
Even small signs of progress, such as the recent approval of two drugs that slow disease progression, are incredibly powerful. “They’re a sign of hope,” she says. “And they’re linked to research we helped fund 40 years ago.”
For audiences to stay engaged, the charity has to show this progress, but without jumping too far ahead. “We have to keep telling the difficult stories,” she explains. “Otherwise, when we share good news, people think: great, it’s fixed. And they move on.”
Culture Story: Empowering Teams to be StoryTellers
For storytelling to be effective externally, it must first be clear internally. That’s especially true in a large charity where teams, from researchers to fundraisers to helpline staff, speak to different audiences daily.
“The first way to undermine a good story is for everyone to tell a different one,” Charlotte explains.
To bring consistency, the charity has developed ten organisational beliefs: shared statements that define its stance on dementia and its role in addressing it.
This clarity empowers everyone in the organisation to tell the story in their own voice, with confidence. “You don’t need to be in comms or fundraising. You meet someone walking the dog, they ask what you do…that’s your opportunity.”
Social media, she adds, makes this even more important. “Anyone can post about the organisation. So everyone has to be on message. The more consistent we are, the more effective we are.”
And paradoxically, consistency creates space for personal authenticity. “When people know the basics, they don’t have to invent everything. They can tell their version of the story, grounded in the truth.”
Selling Story: Adapting for Audiences
The modern fundraising model for charity can be complex, and incredibly diverse. The Alzheimer’s Society engages everyone from pensioners giving £5 a month to corporate boards with millions to invest. Each audience requires a different approach, but without losing the powerful integrity and sense of purpose at the heart of the story.
Now, the team uses targeted messaging for each audience, backed by research and constant learning. A pitch to a retailer, for instance, might focus on how dementia affects their customers. “We show them their audience is already thinking about dementia, so they should be too.”
It’s not just about tailoring the message. It’s about creating a value exchange. “People want to feel they’re getting something in return,” Charlotte says. “It might be a sense of purpose, a personal connection, or just the knowledge they’re backing something that works.”
Perhaps the most important factor is creating a sense of agency. There’s nothing worse than feeling like you care, but not knowing what you can do. And the truth is that different audiences have something very different to offer. The Society is learning how to give different kinds of agency to different kinds of audiences.
The Full Interview
This was a great conversation and if you are interested in the challenges of storytelling for good, we’d strongly recommend watching the full thing. It’s only 40 minutes, and Charlotte is a wonderful StoryTeller!
In particular, 3 key takeaways:
Never get tired of describing your problem. But offer progress too.
Do the hard yards to align your story internally - everyone is a StoryTeller.
Adapting your story for different audiences is about giving them agency.
Charlotte was also kind enough to share a list of reading recommendations, some great things here for you to dig in with.
Rare Breed – Sunny Bonnell and Ashleigh Hansberger
And if you are thinking about charities to get involved with, or you are experiencing challenges around dementia in your own family life, we’d strongly recommend getting in touch with the Alzheimer’s Society.
We’ll be donating £100 to the charity in recognition of Charlotte’s time, and we look forward to supporting them in the future.
Here’s the full edit…
Our Event: StoryTelling into a Headwind
If you work in the charity, not-for-profit or purpose-based brand space, LookUp would love to invite you to our next event, held in Central London on the morning of WEDNESDAY 21ST MAY 2025.
Our co-founders, Matthew Hook and Caroline Keylock will be hosting inspirational speakers from organisations including Alzheimer’s Society, CALM, Macmillan Cancer, MediaLab, NABS and The Sports Trust (with more confirming this week.)
We’d love to see you there!
Please RSVP and find out more at:
https://wearelookup.com/headwind
