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Dementia Explained – providing dementia information to children

Dr Laura PhippsKirsty MaraisClaire LucasRobin BrisbourneKaty StubbsFaye MonkEd Pinches

This week Alzheimer’s Research UK has launched a brand new website, ‘Dementia Explained’, designed to help children better understand dementia. The site brings together a range of resources such as games, story books and videos to help children understand more about the brain and the impact dementia can have on individuals and their families.

The launch of Dementia Explained is an important milestone in a larger project to raise awareness of dementia among young people and provide information to help children whose lives have been affected by the condition. The site has been a partnership between many individuals and organisations, as well as families and children who have helped us at every stage.

The idea for the project was kick-started by a team of staff from the Eisai Ltd who were dedicating time in their working week to help those affected by conditions like dementia. Their ambition aligned with our aims to address the lack of free, engaging content for children and young people who have a relative with dementia, and we embarked on a partnership to develop these resources.

de-blog-parentsWe arranged a Tea Party which brought together parents, grandparents, and children from 5 to 15, all of whose lives had been affected by dementia. We listened to the needs of the children and parents who told us that a website would be the best way to deliver the kind of information and resources they thought would be most helpful.

With the help of social media, Mumsnet, and community groups, we gathered input and insight from families across the UK. We asked them what questions they had about dementia, what information they’d find more useful and asked them to share their stories or feelings with us about the condition.

We produced two story books working with award-winning children’s author Matt Elliott, and illustrators James Threadgold and David Nunn. Earlier this year, children’s author and science writer Isabel Thomas came on board to work on the information pages. With experience of writing about science and health issues for children of different ages, Isabel used information from parents and children, and talked to people at dementia support groups, to produce information that would be age-appropriate and sensitive. She developed the information working closely with doctors and nurses who support families with dementia day in and day out.de-blog-brain

We brought digital agency Distinction on board to produce the main site, and game developers Pootle and Pog to create interactive games that children had highlighted as a feature they would like to see on the site. Radio and TV presenter Edith Bowman leant her support to the site and kindly provided voiceovers for the two children’s books.

It has been really exciting to see the site come together over the past few months and great to see the feedback from children and families who have been testing it for us, letting us know what they like, what we could improve, and making sure everything works the way it should.

Dementia Explained has been a truly collaborative endeavour and would not have been possible without the generous support of financial services company Legal & General and the charitable group Stavros Niarchos Foundation – both of whom appreciated the real difference such information would make to families across the countries. Fundraising efforts from the staff at Eisal Ltd and the Rotary Club of St Albans were essential in supporting the production of the books.

Children can share their experiences with dementia on the website's Memory Board

Children can share their experiences with dementia on the website’s Memory Board

Far from being the end of the project, we hope the site will continue to grow long after today’s launch, as more children share their experiences and tell us what other information and activities they would like to see. We want to continue to raise awareness of dementia among children and young people, enthuse them with science, and engage them with the importance of dementia research.

The impact of dementia is felt across generations. To really tackle the stigma that surrounds dementia, to effect a lasting change in attitudes, and to ultimately realise a future free from the heartbreak of dementia, we must create a movement that reaches across generations.

We’d like to take this opportunity to thank everyone who has been involved in making Dementia Explained possible, especially the children and families who have given their advice and support.

Visit Dementia Explained today.

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