Alzheimer’s Research UK has created a website called ‘Dementia Explained’ to help young people better understand dementia as a new poll reveals that nearly three in ten parents in the UK say their children aged 18 and under have felt the impact of the condition. The website, www.dementiaexplained.org, provides child-friendly dementia information focusing on the ways people with dementia can change and the effect this can have on families. By bringing together a range of resources including stories narrated by the broadcaster Edith Bowman, videos and interactive games, the site allows young people to discover more about the brain, how it is affected by diseases like Alzheimer’s and share their experiences to help others.
A new YouGov poll commissioned by the charity has shown that nearly three in ten (29%) parents say that their children have been impacted by dementia*, with 11% saying their children currently have a family member living with the condition. While there are already a number of sources of dementia information for adults, these latest statistics highlight the need for information aimed at younger people.
The website, developed with input from children and families that have experience of dementia, is divided into three sections with the content and design tailored for younger children, older children, and teenagers. The sections include illustrated online books and games for children, information about dementia research and scientific careers for teenagers and an interactive virtual tour of the brain for each age group.
The site includes a retro arcade-style game called ‘Amyloids’, also launched as a standalone app this week. Amyloids sees players learning about the biology of Alzheimer’s, while protecting the brain from the harmful amyloid protein and other proteins known to build up in the brain in the disease.
Hilary Evans, Chief Executive of Alzheimer’s Research UK, said:
“There are 850,000 people living with dementia in the UK and, as large as this number is, it is far from the complete picture. Dementia doesn’t just affect individuals, it impacts whole families and communities. Despite how common it is, there are still a lot of myths and misconceptions surrounding dementia. For children, especially those with a close relative like a grandparent or parent with the condition, it can be a particularly difficult experience.
“Dementia Explained uses engaging content that will appeal to children of different ages to demystify dementia and explain why and how the condition can affect someone. It’s important for young people to appreciate that changes in the way that a family member may be behaving are nobody’s fault, least of all theirs, but the result of changes affecting how the brain works. Educating the next generation about dementia is critical if we are to overcome the stigma that still surrounds the condition today.”
Broadcaster and Alzheimer’s Research UK supporter Edith Bowman has narrated two children’s books that feature on the site. She said:
“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.”
“I can also see this site being a real help for parents who would like to talk through the condition with their children and explain why a family member might be behaving in an unusual way. Dementia isn’t like a lot of other illnesses and children can have so many questions that aren’t always easy to answer. The stories, information and activities on Dementia Explained will really help with this.”
The website includes quotes and experiences provided by young people who have a family member with dementia. Visitors to the site are able to submit their own experiences of dementia and post pictures, videos and pieces of writing that they might like to share with other young people.
Twelve-year-old Dan Franks’ Nan has Alzheimer’s disease. In a video for the site he talks about his relationship with his grandmother and what having a close relative with dementia has been like for him. He said:
“My nan has always been one of the closest people to me. When she first started to show signs of Alzheimer’s, it was very confusing and I didn’t really understand what was going on. As time went by I learned that even though certain things about Nan are changing, she is still the same person – there are just some things that are more difficult for her now.
“I hope that this new website, and me talking about my Nan, will help other kids who know someone with dementia.”