Ally Bally Bee book project to help children learn about dementia

By Sarah Toom
BBC Scotland news

Image caption, Nina and Matthew's books are personalised to each individual child

Sometimes Granny doesn't remember my name. She does unusual things too. She gets lost in her own house and puts orange juice on her cereal. What's wrong with Granny?

These are some of the questions a child may struggle with when a loved one is living with dementia.

An estimated 90,000 people in Scotland are living with the condition according to Alzheimer Scotland, and it can be particularly confusing for the youngest members of the family as they try to understand the behavioural changes in their loved one.

Now, an Edinburgh family have launched what they're calling "the world's first personalised children's book about dementia" to help kids navigate what can be a rather tricky time.

There are many existing resources available on coping with dementia as well as other styles of customisable story books, but the Ally Bally Bee project claims to be the first to combine the two.

Dementia arrived in the Adams-Aikas family two-and-a half years ago. When Nina Aikas's grandmother, who lived in Finland ,was diagnosed in her 90s, she said it was strange to see someone she knew so well behaving so differently.

Her partner Matthew became worried. "At the time we were expecting our first baby. I remember sitting around the table with the family thinking about how difficult it was for the adults in the room to comprehend it. And it got me thinking, how would I explain dementia to my child?"

And thus, the idea for the Ally Bally Bee project was born. It provides books personalised to each individual child, using names of their own family members and examples of the specific behaviours of their loved one, all with the aim of explaining why they've changed.

Image source, Adams-Aikas family
Image caption, The book was inspired by Nina Aikas's grandmother, who was diagnosed in her 90s

"In the book, the child is taken on a magical journey through their loved one's brain, guided by a tiny 'super doctor,' Matthew says.

"They travel, for example, to the hippocampus which deals with memories. Their memories are represented as shelves with jars of all different shapes and sizes but the dementia has muddled the jars up and moved some around so the child has clean up and put the memory jars back in place to help granny or grandad remember."

The concept reached the crowdfunding stage in March and exceeded its funding goal in just three days. More than 130 orders for books were placed by people in the UK, Australia, America, France and Sweden. The illustrated stories cost £20, with some of the profits going to appropriate charities. One of the early supporters was Karen Lau from Glasgow. Her partner Francis, who is 59, is living with young onset dementia.

"Frani behaves now as if he is a different person altogether and we know it's the dementia that does that.

"He has no filter and makes remarks which are inappropriate in public which makes things like shopping difficult. And he will curse in front of the children and laugh. He was still working when he was diagnosed and so was I but I've had to give up my job to care for him."

Image caption, Karen Lau believes the book has helped her grandson Jamie

Karen bought one of the books for her six-year-old grandson Jamie.

"We were struggling with how to tell our grandchildren about what was happening to their Papa.

"We were all sitting one day saying 'wouldn't it be nice if we could just make something specific for Jamie.' I'd bought quite a few books but they weren't relevant for our situation. Then literally I got a ping from Kickstarter about the Ally Bally Bee project and I thought 'wow, they've heard us!'"

Karen says Jamie used to fear that his grandfather's condition was contagious and he would avoid him or evade the subject of his Papa altogether. But she says the book has changed that.

"He reads about his Papa saying bad words sometimes and not sharing his sweets like he used to. But it also says that deep down his old Papa is still there and still loves him."

That's the experience of one family, but can immersive literature really help normalise dementia for children?

Dr Jack Boyle, a chartered psychologist in Glasgow, said: "For some children, the book is an ideal way of building a bridge between their grandparents and their own parents. But some children are not very good readers or have no interest in reading.

"We have to be flexible and recognise that one approach doesn't suit all children. And there's no way around this one here - dementia poses a terrible pain and anguish in families and there's no point in pretending we can overcome it with techniques that will help everybody."

There may be no cure for the degenerative brain disease, and the pain it can cause. But for today, the Lau family at least have a few more pages of a special story to read together, and cope together.

The creators of the Ally Bally Bee project say their next step is to translate the book into other languages, starting with Finnish and Swedish, to reach more families affected by the difficulties of dementia.

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