Alzheimer’s Research UK

Helping young people understand dementia through age-appropriate website content and a child-centric CX.

Services: Research & Strategy | UX & Web Design

Sector: Not For Profit

Alzheimers
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BMA Awards 2017

Runner up at the BMA Patient Information Awards 2017

Helping young people understand dementia on their terms meant looking closely at their experience and taking an age-appropriate approach to improving the website CX.

Taking a child-centric approach to understanding Alzheimer’s

Alzheimer’s Research UK is the UK’s leading research charity. In funding world-class studies and research, it has the explicit aim of one day completely eradicating dementia through prevention, treatment and cure. It’s a tough ask, and one that requires a multi-faceted approach if it’s to engage more people in understanding dementia.

Hearing what young people think

One area that Alzheimer’s Research UK recognised it needed to improve was is in young people’s understanding of Alzheimer’s… its causes, its effects and its impact. Not only because children are essentially the future of research, but also because they’re the ones whose questions were being largely unanswered.

For many young people, the desire to know more about the degenerative disease comes from hard personal experience, usually through a grandparent, but also often through a parent living with Alzheimer’s. Indeed, a YouGov poll revealed 30% of children aged 18 and under have felt the impact of dementia, with 11% currently experiencing a family member living with the condition.

Answering young people’s questions

The problem for Alzheimer’s Research UK was that, at the time, the content on its website was overly adult-oriented with no opportunity for inquisitive younger people to find out more about its impact in a way that was appropriate to their age and experience.

As experts in the adult worlds of fundraising and medical research, Alzheimer’s Research UK recognised they simply weren’t talking to children in a way they needed to on a digital platform.

Providing complementary skills

Recognising this shortfall, and also the long-term value of engaging people in the subject of dementia at an earlier age, Alzheimer’s Research UK had already conducted research into the issue, leading to their decision to approach us. With complementary skills to their own, we brought the digital expertise to develop a new website which would answer young people’s questions and, importantly, help them manage their feelings about the impact of the disease.

Alzheimer's_Child working

Helping children understand dementia on their own terms

Distinguishing three groups

The first obstacle was clear: we needed to discover what young people needed to know about Alzheimer’s. To give us clarity, we ran a series of workshops where experiences, feelings and knowledge were explored. Combining this with what we had learnt from Alzheimer’s Research UK’s own research findings, we discovered we needed to address three distinct groups: under 8s, 8-12 years and young teens.

Embracing the emotion

Right from the start, this proved to be an emotional process for members of our team. Vivid personal experience came to the fore. As a result, the desire to help the charity meet its objectives became a personal crusade for many of us.

Soon, issues like regulation and compliance – which could be obstacles to clarity – were addressed with energy and purpose as the project evolved into what felt more like a mission.

Creating age-appropriate content

To fill the knowledge gaps the three groups had shown us, we created age-appropriate content for each group, built around the ‘Explore the Brain’ concept. Featuring illustrated stories and games, with an interactive virtual tour of the brain, the portal even includes advice to encourage the older group of children into a career in science (building on the interest they were expressing in the causes and effects of a serious medical condition such as dementia).

The site also features a custom-created arcade type game called ‘Amyloids’ (the toxic protein that builds up in the brain of someone suffering from Alzheimer’s) to help make learning fun and interactive. Players learn about the biology of Alzheimer’s while trying to protect the brain from amyloids and other harmful proteins.

Sharing personal experiences

Having been given videos of children talking about Alzheimer’s and how it affected people they loved had a massive and lasting impact. As well as driving our thoughts around what the content should look and feel like, it provided real momentum, making the project hard to put down and easy to pick up.

Building on the impact of the videos, we provided young people with the opportunity to share their own experiences and memories of dementia on a Memory Board. Young visitors can add their own thoughts, videos, pictures, songs and poems and other writing about their feelings or experiences and share them with other children and teens who may be going through something similar.

Delivering relevant resources

Every project is unique. Every project has value. But every now and then, a project comes along that has real purpose, becoming an emotional journey in itself, with an objective we all strongly believe in. Alzheimer’s Research UK is certainly such a project, and is one we remain proud to be involved with.

Outcome

This project was always about the outcomes for the end-user – helping young people understand dementia on their own terms by accessing age-appropriate resources. We were delighted to hear that the Dementia Explained website was recognized at the BMA Patient Information Awards 2017.

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I think this is a brilliant project. As a parent of young children, it is great to see such a fantastic array of age-appropriate dementia resources all in one place. Dementia affects so many families that it’s high time there was a site like this dedicated to children and teens.

Edith Bowman

Broadcaster and Supporter, Alzheimer’s Research UK