From relatable books to interactive games, experts in the field share their advice on explaining the illness
‘Dementia will never go away, but neither will her smile’
The father of two from Manchester is the co-founder of the Happy Smiles Training, an organisation that delivers inclusive training and projects across the UK.
Alex was a teenager when his late grandmother Mary Perry began to exhibit signs that something was amiss.
“I always wanted to write a book about dementia because my grandma had dementia and no one spoke about it,” Alex says.
“I was in my early twenties or maybe before that, when she was diagnosed, but to be honest we knew for a long time before then, that there was something there, but we didn’t have an official diagnosis.
“So that’s what I wanted to do, so I did it. I crowdfunded the book and it was released in January 2021. It ended up winning the Alzheimer’s Society Dementia Hero Award in 2021, which was really unexpected. My grandma passed away about a month before the book was released unfortunately, but I’m really, really proud that her legacy lives on through the book.”
Alex says that people tend to shy away from talking to children and teens about difference, disability, and illness, and he believes it’s better for everyone involved to introduce young people to tough topics in a “softer, more supportive way,” as he endeavours to do via his books, and through the talks and workshops he delivers in educational, community and corporate settings.
Alex’s My… Has series features five titles and they explore dementia, depression, Tourette’s, cancer, and cerebral palsy.
“The books I write are about depression, cancer, and things that aren’t easy to talk about, but I believe it’s healthy to talk about them,” Alex says.
“Not that they have to go out and save the world or try and support every person who has dementia, but if they have a better understanding of why a family member is behaving differently, it might help their anxieties, while appreciating that they still love that family member and that family member still loves them.
“I think there’s definitely the fear of saying the wrong thing. There’s a fear of dementia itself, so there’s a fear of if we talk about it, we might make children scared of it. But I think if you do it in the right way, if you do it in a supportive way, like in the book My Grandma Has Dementia, one of the last lines is: ‘dementia will never go away, but neither will her smile,’ and my grandma was always smiling.
“Yeah, there was days when she didn’t feel herself or whatever, but when she passed away we had a lot of people getting in touch to say how amazing her smile was and how it made their day. It’s just a point to make with children, that with dementia unfortunately there’s no cure and it doesn’t go away, but we can still love our family member with dementia, they can still love us. We can still support them as much as possible, and it’s not easy.
“I think people just don’t want to increase any anxieties that children may have by talking about it, whereas I believe the opposite. I think we should try and talk about it where possible.”
“The book tries to shine that positive light on, not making dementia a positive thing, but the fact that if somebody has dementia, it’s not the end of the world and essentially, they are still a person who can be loved and does love you.
“Funny enough, today should have been my grandma’s 90th birthday, the day you got in touch. I’m really proud that her legacy is living on through the book and it’s reaching people.”
My Grandma Has Dementia (£7.99, independently published) is aimed at children aged 4-11. For more information on Alex’s work, see www.happysmilestraining.co.uk
‘It’s about living well with the condition’
Dementia NI is a local member led charity driving positive change for people living with dementia.
Empowerment Facilitator Emma Green’s role involves visiting local schools in order to raise awareness and foster a greater understanding of the illness.
“Kids are so inquisitive, and they want to know all the ins and outs of stuff, so we actually bring members with us,” Emma says.
“We always bring members with us because the best way for anybody to understand it, to actually talk to someone who lives with dementia. They are the experts.”
In relation to discussing dementia, the health professional says often adults may think, ‘you don’t need to know about that yet’, and avoid the topic.
“Children are like sponges and they understand things a lot more than we think,” Emma says.
“The way we would approach it is to play some memory games, to start introducing it in a simple way, what actually dementia is. So even through there are loads of different types of dementia and some don’t even affect the memory, the majority of dementia is to do with memory, so we will play games to explore that.
“In one game we have 10-15 random household objects, things like a hairbrush, a phone, a pen. We would have those at home, and this is something that can be done with individual kids, just so they can understand what memory is. We would cover the objects up and get them to close their eyes and take an object away, and then for them to try and recall what object was missing. We might then get them to close their eyes and take a different one away. So it’s getting them to understand how they use their memory and what memory is for.”
Such games also encourage children to think about the bigger picture of how they can help a loved one with memory difficulties, Jane says.
“We ask the children, ‘What did they do to try and remember the objects?’ A child recently said she looked at the objects and repeated the name three times in her head, and that helped her. That was a strategy she used to try and remember them, and this is how then we linked it to someone with dementia; they may have to do that to try and remember something, or they might have to write something down.
“Children take things matter of fact and if things are put to them in a simple manner, I think they understand. If they notice say granny or grandad or auntie or uncle have misplaced their keys, they understand, ‘Oh well, they haven’t remembered where they put their keys, I might be able to help with that,’ because they understand that memory is a bit of an issue.”
Emma advises adults to keep their wording as positive as possible, for example saying, “people living with dementia,” as opposed to “suffering from”.
She also points out that it doesn’t just affect the elderly.
“They are quite a few people who are young, and it isn’t just grandparents, it is aunts and uncles and parents themselves who are starting to show early signs of dementia and getting a diagnosis,” Emma says.
The empowerment facilitator suggests parents and guardians visit Alzheimer’s Society website for useful resources, and the Dementia NI website to access a game which has been developed in conjunction with Queen’s University, Belfast.
Commenting on the game, Jane Gillow, Communications Officer at Dementia NI says:
“We’re proud to have created this free online game with Queen’s University to help children understand dementia. We developed the game because it was evident from our work with local schools that there was a need for a resource for children that raises awareness of dementia but also talks about living well with the condition and reduces children’s fears around it.
“Dementia NI members, all of whom are living with dementia, joined forces with Queen’s University and Primary 6 children from local schools St Oliver Plunkett, Hazelwood and West Winds to develop the fun and interactive game. Everyone came together to discuss what the children need to know about dementia and how best to engage them.
“The game outlines common scenarios that reflect some of the changes children may be seeing in the behaviour of a relative with dementia, as well as giving them practical tips for communicating with their loved one. It is our hope that parents and teachers play the game with children to reassure them and encourage them to talk about and understand dementia.”
To play the game, which is free of charge, visit kids.dementiagame.com/dementia-kids. For further information or to support Dementia NI visit, www.dementiani.org, call 028 9693 1555, or email email@example.com