The Dementia Podcast

Talking Art: A child's storybook-creating conversations

July 22, 2021 Professor Colm Cunningham
The Dementia Podcast
Talking Art: A child's storybook-creating conversations
Show Notes Transcript

Join Colm and best-selling author Alex Winstanley as they discuss Alex’s award-winning book “My Grandma has Dementia” and the importance of lived experience and child targeted authorship in dementia care. Alex spent years as a teacher and carer and has since set up a not-for-profit organisation called Happy Smiles Training CIC . Alex is currently writing a series of children's books that support them to understand a range of long-term health conditions, including dementia, depression and cancer. 

In this episode, Colm and Alex discuss the role of his book in introducing children to the impact of dementia in a soft, supportive, yet, realistic and positive way, through the personal story of his own grandma. Alex shares his reasons for writing the book, hints and tips and the use of wonderful illustrations with subtle messages to help start the conversation.

This conversation is the first of many podcast episodes on authorship and the many ways the arts are utilised in the field of dementia Care.

Read ‘My Grandma has Dementia’ and Alex’s other books here

The Dementia Centre has many books and resources to assist those living with or caring for people with dementia. 

Alex, discusses the impacts of moving his grandma into care, please find here a helpful resource that provides tips on moving a loved one into residential care. 

'Race Against Dementia' as mentioned in this episode, funds innovative dementia research. 

We welcome any feedback to please be sent to the email: hello@dementiacentre.com . Feedback allows us to continue to provide an up to date and relevant platform that discusses the needs and lives of those living with dementia and their carers.

Colm:

Hello to you and welcome again to the dementia podcast. Today we are beginning a collection of conversations talking about the arts. It's going to help us consider the role that film, paintings music, and in our first episode books can play in informing, inspiring and shifting our thinking on dementia. We're going to be talking with authors and artists, including those who've taken to the pen, the paintbrush or the stage who have dementia. Some of the things we want to explore is how personal and fictional representation informs challenges and at times, I'm sure it gets a completely wrong. I recently heard of an interview with Dame Judi Dench about playing the author Iris Murdoch, and how she really agonized over representing Well, the experience of somebody with dementia. The Irish author Bernard Macavity is play the woman from the North is one familiar to me because it's about my homeland of Northern Ireland, as he depicts a one from Belfast, Northern Ireland with dementia. We hear her thoughts and ideas from inside her head, she tries to tell us what it's like as doctors seek to assess her. When I heard this play performed, it left a number of doctors shaken on challenged. So let's together consider the role the arts can play in dementia. starting the conversation today, I'm joined by the author, Alex Winstanley. He is the author of many books on health issues, aimed to help children understand and have conversations about important issues. But in this latest book, "My grandma has dementia", It's personal, as he's the real life grandson, telling the story of his grandma. So I'm really glad to catch up with Alex, about why he wrote this book about his grandma, Mary Perry. Alex's book is dedicated to your grandmother, Mary Perry. So can you tell me a bit about why you decided to write this book?

Alex Winstanley:

Well, I'd always wanted to write a children's book about dementia, because growing up, I never fully understood dementia and the impact that it had on my grandma, and also on my mom as well. And our family. And I just wanted to try to introduce children to the impact of dementia at an early age as possible, in sort of a soft, you know, supportive, positive and realistic way. And this was something I'd always wanted to do. And when locked down hit last year, the first lockdown, I had a little bit of time to be able to do that. And I just went for it. And yeah, this this was the product of that.

Colm:

What was important to you in trying to both tell the story of dementia, but also, you're also telling the story of your grandmother?

Alex Winstanley:

That's right. Yeah. So I tried to tell the story of how dementia impacted my grandma in some ways. Obviously, there's many more, but we can't capture all of them in a children's book. But the idea is that this is an introduction and a conversation starter for children and young people, with families, with teachers, with friends about something that just isn't spoken about widely enough that I just saw on the news this morning, Jackie Stewart, so Jackie Stewart was talking about his foundation. He started with his wife in 2014. I think it's called race race to dementia, or race against dementia. And he was saying, you know, one in three people, or sorry, one person every three seconds globally is diagnosed with dementia. And you know, the numbers are rising and all the time. And I feel like the best way to try to support families is by making children and young people aware of dementia so that as they grow up, they're fully aware of how it can impact people and how they can support family members as well and the way that they can play a role in in helping people

Colm:

what has been the experience when you've heard from people who've read the book locally?

Alex Winstanley:

Yeah, quite overwhelming, to be honest, locally, even internationally, you know that people like yourselves get in touch with the host of the book, which is absolutely incredible, especially when it's coming from people like yourselves with so much experience in the dementia field, you know, helping to promote the book. It certainly gives it a lot of recognition. And you know, it's just recently won a dementia Hero Award with the Alzheimer society in the UK, which was just unbelievable. I never thought that would happen ever. It's just something that I wanted to write, to try to tell my grandma's story and help people to understand dementia in in a positive and supportive way like I say and you know, yet we've had people get in touch with them across America across the States, Australia, New Zealand, across the UK, and you know, when people get in touch there was talking about somebody Getting in touch locally, there was a parent who got in touch, who said, I read this book with my four year old son. And I wanted to try to explain to him how dementia impacts his granddad. And I couldn't find a way of explaining why granddad was behaving in certain ways. And this book did that. And we sat together and read it, we read it together. And she said, even at four years old, she said, My son called Alfie, he cried. He understood, you know why granddad was feeling and acting in certain ways. And he said, but then that she said, that became his favorite book. And we've read it every night since. And so for somebody to say that that sort of impact is, that means the world,

Colm:

I loved the conversations that you've created with people. And I noted in particular, that you've got some little tips that you need to pay attention to some of the illustrations, because you've got post it notes, which you've written cues to assist your grandma, can you tell us some of the other stories that children and adults may have shared with you about their ideas?

Alex Winstanley:

Yeah, yeah, definitely. That's, that's something that helped my grandma, you know, we found things like big clocks, and all these little things he learned along the way, but posting also was a big thing, particularly at the start of the journey that we went on, and I wanted to try and get some of those little hints and tips across and there's what I love about the way that the illustrator Adam has done some things that we had a lot of discussions with around the illustrations, and how we can have some little subtle messages in there and some sort of key points so I'm one of the pages grandmas when one slipper but you can see the little boy in the book is is holding the other slipper in his hand. And that's very easy to say to children, you know, what's he got in his hand? And why is he got that slipper in his hand? And why might that be helping grandma and, and how might that be helping grandma and, and quickly starts that conversation around, even as a child how you could offer support. At the same time, I'm also very, very passionate about not hiding children away from from these sorts of topics. Because I know my mom as my grandma's sole carer, you know spent her entire life as long as I've been alive. I've seen my grandma, my mom care for my grandma until she my grandma passed away just before Christmas last year, and I saw my grandma care for my mom, sorry, care for my grandma, you know, 24 seven. And that was often very stressful as well and create a lot of anxiety for myself. And I know my mom wanted to hide as away from that and take everything on board, like lots of sole carers do for relatives, and I'm sure lots of people can kind of empathize with that. But you know, I always wanted my mom to speak about dementia and, and the experiences and her own feelings as well and to try to look after herself. And this is again, this this is what cultivated in this book, all these little things that I suppose I've grown up with,

Colm:

I suppose is one of the other things I would say to people listening is that of course, you've made this a passion because the amount of books and I know you've got a new one coming out very soon, that are aligning those conversations to happen, you're really hitting the nail on the head is how do we get people to talk about something that, you know, isn't easy to start the conversation, um, where somebody may well be carrying a lot of burden, so I can relate to what you're saying about your mom?

Alex Winstanley:

Yeah, yeah, that's that's right. And, you know, there's little hidden things, again, with the illustrations that, you know, when when I've been taking the book into schools, and we've been doing reading with, with children, and we've been doing some intergenerational reading, as well between children and care home residents, which has been fantastic in an online format, which has been amazing. And watching the questions that the children ask of the of the residents, and vice versa, has been absolutely wonderful. And yeah, some of the hidden things in the illustrations. For example, there's, you know, there's a character in the background on the phone at one point to the doctor, there's a same character, he's then helping to cook a meal in the background later on in the book. And there are no pointers that said that that's the character that could be an auntie, that could be that could be a carer paid or unpaid. But they're the conversations that, you know, have been happening because of that. So I've been saying, well, Who could that be? And the suggestions they come up with children. And we talk about, well, how can they offer support to grandma and the family? And yeah, there's a lot of conversations that snowball out of that. And it's exactly that it's starting those conversations. It's so so critical. I believe that we start these conversations with children and young people about dimension about these other topics in the other books as well.

Colm:

Alex has the book created any stories you've heard from children about how it's helped them talk about their grandparents with dementia?

Alex Winstanley:

Yeah, so you know, there's been one or two times where there's there's been a younger child or young person in class and they've said my grandma had dementia or my grandpa had dementia, whoever it was, I remember one little boy recently, he said that his granddad had dementia. And he said that we used to play lots of games, because in the book he mentions playing games and we talk a lot about when when children do when we do a question and answer you know, I'll get asked what's the most important thing that you think we should do to help people living with dementia and I always say personally is to involve them in any thing that you can do is to involve them in things like games and just to keep the brain active and stimulated. And that's something we learned with my grandma. But this little boy said that they used to play lots of games of granddad. And I said, That's fantastic. Because, you know, not only do you get the enjoyment out of playing the games, with your granddad, it's keeping your granddad's brain active and stimulated. And that is so, so critical. And just to tell a quick story, I mean, for our experiences, my grandma lived on her own for most of my life growing up, and she was she was safe at home, arguably, she'd watched a lot of television, and she would always ring sort of 678 times in an evening to tell you what was on TV, as I'm sure a lot of people again, can empathize with, he got to the point where she would start to have falls. And she then lived with us for for a couple of years in our family home. And again, she was very, very safe. But it's only looking back that we realized that actually even when she was living with us, she wasn't stimulated enough. She wasn't active enough. She was happy and safe from what we saw. But it was only when she moved into a local care home that actually, you know, and I was like, absolutely terrified of that happening. And there's been a lot of guilt that people can empathize again, with my mom, I still think to this day even feels a slight amount of guilt. But it was the best thing that ever happened because I remember I walked into the care home the first week, my grandma lived there. And it was very scary because of everything that you see on the media. And this is why I think that the media needs to portray positive examples of care homes, like like I've done in the book, rather than negative. But I walked in, and my grandma was watching England playing football, playing playing soccer, and she'd never watched football before, and she she had flags, hats, and they're all having a great time, and I couldn't believe it. So I'm so so passionate about making sure that we keep you know, people living with dementia as active, as stimulated as possible.

Colm:

Can you tell me if there's anybody listening? Who has a book or a story in them? What did you learn through this process? From your point of view?

Alex Winstanley:

Yeah, great question. I think To be honest, I just went went for it. And really enjoyed writing about my experiences, my grandma's experiences and and our family's experiences. What I would say is that someone, if someone has a story to tell, that is your story, and that is so so important. If you've got lived experience of something, for me, particularly this day and age, and at the moment, there's nothing more powerful than your story, there's nothing more powerful than your experience. And you might not think it's important, but it is people people don't have the experience that you have. So you know, tell your story in the best way that you see fit. And in this sense, I wanted to do it in a way that was engaging for children. So using rhyme with, you know, with illustration as a picture book. And that's the way I felt most comfortable with. But you know, find the best way that you feel comfortable with be it, a podcast, a video, vlog, a blog, a book, an instruction manual, whatever it may be. And just to get your thoughts out there, because I think you'd be surprised at how much people might take from them

Colm:

Alex, I have to admit that the book was even more powerful, because it was about your grandma Mary. And that really sends through and allows people to connect to the fact that it's about your passion as well, I know you've written other books, but that conversation that's created has greater depth because it is your grandma. So I so much appreciate the story you've shared and the fact that she's sharing her story with us. Thank you so much for taking part in the dimension podcast. And thank you for not just this book for all the amazing books that you produce, because I think they're all about knowing the person and starting the conversation. So it's such important work, and I really appreciate it and it's no surprise you won that award.

Alex Winstanley:

Oh, no, thank you, I really appreciate it, it was definitely a surprise to me. No, I appreciate that. And I'm what I'm just very, very passionate about creating that awareness for for children, for young people starting that conversation around Person Centered Care, and how important that is, you know, and how anyone can provide Person Centered Care, you know, even even as a child, there's so so much you can do to to help. And I just think the more we start these conversations with children and young people and families, we bring families together the better support and better person centered support we can provide for people living with dementia and other long term health conditions. And you know, like, like, touched on the the other books around, I've been around, you know, cancer and Tourette's and cerebral palsy, which is coming up now. The second is on depression. And there are things I've seen in my family with friends. So we don't affect everyone worldwide. So we just think it's so important that we have these conversations.

Colm:

Absolutely. Thank you, Alex, for joining us today. Thank you. It's been fantastic for you to kick off these conversations about how through the written word, we share and create conversations about dementia. One of the greatest pleasures of the podcast program is the ability to hear and share stories like yours, as always in our show notes will connect you with Alex's great book on all of his other work. And again, we'd love to hear your feedback and get your ideas on people's authorship. That You think we should hear? As always hello@dementiacenter.com Bye for now.