Island Treasures
This podcast provides a platform for caregivers to share their stories, offering encouragement and insights to those who may be on a similar journey. Guests bring wisdom and empowerment to remind caregivers they're not alone. Additionally, guests share valuable information, tips and resources to support caregivers in their vital role.
Island Treasures
Meaningful Connections with a Dementia Companion
Gina Awad's heartfelt journey into dementia caregiving began with her childhood visits to care homes, sparking a lifelong mission to support families navigating this challenging landscape. She studied Dementia as part of her Health and Social Care degree in 2011 to further explore the challenges and realities of dementia. As a dedicated advocate, she shares her path from those early impressions to becoming a dementia champion, highlighting the emotional and social challenges both caregivers and patients face. This episode shines a light on her impactful community sessions, her dementia training sessions, and her ongoing efforts to foster acceptance, open communication, and understanding within communities.
The conversation takes a personal turn as Gina recounts assisting a close friend in accepting her dementia diagnosis, underscoring the need for awareness and funding. She passionately addresses the often-overlooked social changes, such as the shifting dynamics in friendships, and the importance of educating workplaces about accessibility and support. By drawing parallels with past taboos like cancer, Gina is determined to break the stigma surrounding dementia, ensuring that no one feels isolated or misunderstood.
Listeners will also enjoy exploring Gina's creative endeavors, from hosting a radio show on Phonic FM to illustrated stories of caregivers in collaboration with the late Tony Husband in their book "United: Caring for our Loved Ones Living with Dementia". Her commitment to creating meaningful resources is evident in her upcoming book, "When Time Aligns: the Stories of Care from a Dementia Companion," which promises to weave personal experiences with broader insights into dementia care. Through these narratives, Gina not only shares her experiences but invites us all to understand and support the world of dementia caregiving with empathy and compassion.
In recognition of Gina's significant contributions to supporting people affected by dementia, Gina was awarded the British Empire Medal in 2018. In addition she is a Carer Representative for The Royal College of Psychiatrists for their Memory Services National Accreditation Programme.
Connect with Gina through LinkedIn of through the Exeter Dementia Action Alliance
So welcome, Gina, to the Island Treasures podcast. It's wonderful to have met you and to have you on the podcast today.
Gina:Thank you so much, alison. I'm really, really pleased to be chatting to you all the way over in Canada, and I'm in Exeter in England, I know across the sea.
Alison:Yeah, I got to know you through, basically through Sarah Merriman, who was on the podcast recently, and you reached out and thank you for doing that, and you have a story to share and a wealth of resources. So let's get started. How did you become who you are in the dementia caregiving world when I was eight.
Gina:My sister was seven she's a year younger than me. I used to go into care homes with my grandmother, my nan, and she used to do creative arts with the residents and what I remember from being eight all those years ago is not the residents that were actually engaging with the arts and the things that she was doing, but those that weren't. Bearing in mind I'm eight at the time, so I wasn't able to articulate what I was feeling. But what I recall, which I believe stayed with me for 30 more years, was the residents there that, back all those years ago, were dotted around the periphery of like a day room. There was a blaring tv, some of the people were shouting out, some of them looked isolated, frightened and lonely, and I felt that I'm a real empath and I felt those senses in that space. So that was that Life carried on, didn't bring anything of it.
Gina:But when I was 41, I started doing a degree in health and social care with the Open University, which is a part time one. I'm a bit of a late bloomer, I think, alison, so I wasn't planning on doing a degree at the time. I was planning on doing a one-off module because a friend of mine, um, inspired me because she she did, I think, a health and social care module and she said that she found it really interesting and I thought I'm a bit too thick, I'm only average. I can't do anything like that. Um, anyway, long story short, anyone can do a degree. I mean, that wasn't what I was going to be doing at the time, but anyone can if you put your mind to it. So, anyway, I did the first module and absolutely loved it, alongside working at the time and my son being a teenager. And then I carried on doing different modules. So over the time of six years, I did six modules and then I graduated in 2017.
Gina:But when I selected my second module, and in fact, all the modules, alison, were all really, really life changing as far as the learning was concerned, because I did the introduction to health and social care, I did adult aging in the life course, I did dementia care, I did end of life, I did public health. All of it was absolutely fascinating. I learned so much. But my second module was, as I said, dementia care, and I was getting involved in the research I needed to do watching the videos, reading some of the books and the you know the resources that there were to read and it, I believe I didn't know at the time. It sparked the light inside me that was already there from those 46 years ago, um, and set me on this sort of well. I'm in my 11th year now. Mission or vision to make a difference for families living with dementia in whatever way I can. I didn't plan it at all. This is in retrospect now that I'm saying that, but I did my module.
Gina:I then started doing further research outside of the module, started meeting people locally to find out what was going on around dementia in my community and I found there was a lot going on, a lot, but it all seemed very disjointed and this whole navigation of trying to even consider and contemplate the complex health and social care systems around the world but for me, obviously locally in England was so, so complicated. I thought this is crazy. A dementia diagnosis is really really, really tough. I mean, I say that but I'm not living with dementia so I can say that from my point of view. But I'm not living with it so I don't really know. But what I do know is the families that have struggled to be heard and understood, to be able to manage at times when the care becomes more complex, to support their loved ones in the best way they can. And you know it's really sent me off on a tangent.
Gina:And then I trained as a dementia champion, which is a voluntary role, with the Alzheimer's Society, which I don't do anymore, but I did that for several years and and I did started that six months into my second module of when I was in the doing the dementia module, and the idea is, when you do the training, it's all voluntary um, so you then have to find people, human beings, to listen to, you share these resources, but you also have to find voluntary space, um, and that in itself was quite tough. It's a challenge, yeah, especially back in sort of 2013, where you know, yes, we all knew about dementia there, but it's in the last 10 years that I think it's really taken off across the world that really people are really starting to understand more about it. So that's great. There's still a long way to go, but back then, to try and find people that would be interested in listening to the resources and hearing what I've got to share, which is fairly sort of, you know, specific, was tough, so I didn't do much of it in the first six months and then all of a sudden I just decided to randomly just speak to a local coffee shop to see if they would be happy to host me and maybe some public whoever would come to a session. So I sort of did a bit of advertising and put it out there on social media and did my first session in Costa Coffee in Exeter, which was really, really enlightening, because some of the people that came to the session were living with dementia and just been diagnosed. Some of them were caregivers that felt that they maybe had a family member living with dementia but hadn't been diagnosed, and just the general public that wanted to know more about dementia.
Gina:So after that that one, it inspired me to do more and I ended up doing about 20 sessions in about six months, reaching lots and lots of people. And what stood out to me? There were so many recurring themes, and the themes were fear why are you telling me this when I should have heard this from my doctor? How do we navigate this system? They wanted to know more. See, I can only give them the knowledge and information that I had, which obviously wasn't enough, but it certainly got people thinking and it made me realize that a lot of the services in the community were very disjointed.
Gina:So that's when I created the Exeter Dementor Action Alliance, which was a community group, to start with, again as a volunteer, and then we sort of were able to try and do a bit of fundraising which we've been doing over the years to create this micro foundation. But it's been very, very tough, although you know I've delivered sessions all over Exeter and reached probably about three or four thousand people delivering information sessions in in the organizations and voluntary spaces and stuff like that. It's been really tough because obviously I can't do everything for nothing and I need to add a living and I was doing different work at the time. So we've managed to keep sustainable. So we celebrated our 10th year last year, which was amazing. Yes, thank you.
Gina:But it's still tough to keep going. I'm not somebody who is a fundraiser. Yes, we've managed to get great support from our local community and friends of mine and organizations that believe in what we're doing, but it's kind of tiring trying to raise funds to keep going. So I just um, I mean I work quite a lot of hours for the alliance but in class the consultant, we don't have any paid people. It's not a charity, it's a micro foundation. We're all volunteers, mainly apart from I. Get paid a little bit and that's how we've been sustainable, but it's it's a constant challenge. So that's a bit of a snapshot, alison, how it all came to be. So it's basically been very bitty here, there and it's led me on different paths, and all I can say is I am so grateful to all the people that I've met in the last 10 years that continue to inspire me to make a difference for people affected by and living with dementia.
Alison:Oh, that's fabulous and I'm impressed by the number of people that you had at that first session. That must have been overwhelming to have that many people show up that had questions, that were just receiving the diagnosis themselves. They were hungry for the information and they came, and that's huge that they actually came. Were hungry for the information and they came, and that's huge that they actually came. Was there nothing in the Exeter?
Gina:area at the time previous for dementia there was, but in England. I don't know how it is in Canada, but in England it's very patchy, so the information and the support and resources that's available in every community differs such a lot, which I've discovered over the last few years. So people might get a diagnosis in some areas and they get really good post-diagnostic support. They might have support from an abnormal nurse, they might have a dementia support worker who they can be in contact with right from diagnosis right to the end um the later stages and when the person you know dies, and support for the family. But um, there wasn't really that much. Um, locally people get a diagnosis. There was maybe the offer of having some medication which would help with the symptoms but not obviously cure it, because there is no cure for dementia at the moment, although I'm praying one day there will be, and I hope it's in my lifetime um. So yes, there's bits and pieces. The Alzheimer's Society did some um, had some resources and things, some great resources online and there was. They did some face-to-face work, but um, there wasn't enough and also people came across a lot of these resources by default, which frustrates me and still continues to do, because I believe, once a person is diagnosed and their care partner, whoever that is, significant other, friend there should be a clear pathway, yes, for people to navigate and to tap into as and when they need to.
Gina:There's no point arriving at a memory clinic, receiving a diagnosis, being giving a load of written information and saying bye, thank you, we'll see you in six months. Have a read of that. I wouldn't want to read a load of information. I'm processing it. I would be processing a diagnosis emotionally, mentally, in every way. There is.
Gina:The last thing you want to do is read a load of documentation and also it's's too scary. So, therefore, then people go on the Internet, they look at all the stuff on there and they panic and they think this is the end of my life as I knew it. And, of course, it's important to say and you'll know this, alison, I'm sure, with some of your listeners and things that there is a lot of life to be lived once the diagnosis is received. That there is a lot of life to be lived once the diagnosis is received, if it's a timely diagnosis, if the person is diagnosed and it's timely, and when I say that, I mean they find it early so they don't wait until crisis point, and then they're far down that pathway. And then you know the support, for example, the medication wouldn't help and they're losing capacity. That's not what we want. But we also understand globally that people are still frightened of that diagnosis, of that word dementia because it is scary.
Alison:It is scary. Well, there's so many unknowns with dementia and, like you say, if you're putting off going to the doctor to get that diagnosis, you're doing yourself a disservice, because you can do earlier interventions, you can do healthier living, you can make a significant effort to stave off the progression of dementia. But it is what it is. But denying that it's there is not healthy.
Gina:It's not healthy at all, and I've been around people that are in denial. One is is recently or last year, is a very close friend of mine. She didn't even want to say the word yeah, but she also, she's, she's. She did get a timely diagnosis, um, which is good, and that came about in a complicated way but it came about. She got the timely diagnosis and then her friend reached out to me who we mutually knew, and then when I went around to see her, she said I don't even want to say the word, I hate it. Why me? And I can't imagine what she would be feeling like. She was angry and I get that. And I said I just don't know what to say. I really really don't know what to say.
Gina:I really really don't know what to say to you, but if there's any way, at some point you may be able to accept that you have got dementia. It's not going away. I don't want to bring doom and gloom into your life, but I want to be able to help you as much as I can. But part of that support needs to be an acknowledgement that you have it and I think, being around her and talking quite honestly and openly because of the way she is and I know her well and she felt safe. She's able to acknowledge it now and she does acknowledge it and I really really am in awe of how she does that, because there's times when she really struggles and I'm there with her through those tears but we also laugh as well.
Gina:So, but yeah, I think, like you said, you know, denial is a huge thing and that's why I'm so passionate about it, alison, because if we talk about it and get it out there and there's a lot more media coverage of it globally, then it's going to bring it into the public sphere and people are going to be talking about it more, and that's what we need to be doing. It's like, if you think about it, 20, 30 years ago, cancer you wouldn't say that word, it was a dirty word, you know, whereas now it's so part of life. You know everyone's lives in many ways. If you don't have it, you know somebody that does, a friend or somebody else, and we we talk about it. I know that there are cures for cancer, so that's fortunate, but there isn't the dementia and there needs to be more funding, and that also makes me annoyed. More funding in dementia, but that's another story.
Alison:Yeah yeah, no, it's all about awareness, isn't it? And I'm so grateful for your friend that she has you, because so many people, when they do start to accept that they have dementia and they let people know that they have dementia that weren't suspecting in the first place, they start to lose their friends. Their friends distance themselves.
Gina:I know, and I've seen this as well. I mean, luckily, this friend I'm talking about. She has got four or five fabulous, dedicated, loyal, wonderful friends, and I'm not, you know, I don't want to big it up, but she is very lucky, she is very fortunate, because there's a lot of people that lose them quickly and there's different reasons for that. Partly because people are fearful of it, they might think, oh, that person's not going to remember who I am, so what's the point in talking to them, which you know, yes, that might happen at some point, but that's not a reason not to see them. So some people are scared. Some people just don't know how to be, so they avoid it.
Gina:Some people they might be too close to home because their relative or friend might have had it, and they can't put themselves in that situation, and I get that. But we need to be there for people. We need to be there for people. We all need people, we all need support, and that really, really makes me so sad that people lose friendships. But, having said that, I've known people live with dementia. They've lost friends but they've gained new ones.
Alison:Yeah, yeah, and that's wonderful, yeah yeah, so do you work mostly with the person living with dementia or their families?
Gina:well, interestingly I mean so it's only in the last three years I've been working directly with families, so prior to that I was doing basically delivering public sessions, dementia information sessions to organizations and business to make them more aware and get them to consider accessibility for maybe some of their employees that may get a diagnosis of young onset dementia or dementia and need reasonable adjustments. Or if they're working in an organization where they're speaking to on on the phone. Understanding more about dementia will put them in good stead about how they're dealing with people that may continually call them with the same questions because they've got dementia. So basically educating or teaching. I don't want to sound like I'm this guru or this expert because I'm not. So that was what I was doing, but what I was finding.
Gina:In the last three years people have been coming to me. It's just happened. It's kind of evolved and I didn't put myself out there as such, but it started with a friend of mine three years ago saying that her husband had some support. She needed a bit of sort of time out sometimes to see friends and family. He had sort of two or three people that would come out and then he just basically needed some support on a Monday. So for last almost three years next month, I've been supporting him every Monday so I see him for four hours. He's wonderful. He was 80 last year. He lives in the country and I take my dog River. They've got a dog as well, so I normally take both the dogs out for a walk. I have a drink with him, I watch a bit of TV with him. We talk about whatever we want to talk about. Sometimes I just sit with him in the room and we don't talk at all. Other times we do and, um, he's great. I make him his lunch. He's become more frail over the last six months so that's been difficult to see. But I've been seeing him for three years and I love his company, um, and often he in fact he said to me last week sorry, excuse me, what's your name again, and I said Gina, but it doesn't matter if you don't know my name. And actually I give him a foot pamper once a month so he knows me as the foot lady. So when my name's mentioned and joe, my friend, mentions um me, she always says the foot lady. Oh, I know he loves the foot massage. So I give him a foot massage once a month. Soak his feet, give him a nice massage and put some nice products on, and he loves it.
Gina:So, going back to your question, the type of people I support so I support him in that way, but I also support Jo because it's really hard for her. She's 60 this year and he's 80, so there's that 20 year age gap which in some ways is good because she's able to do a lot for him, whereas if she was 80 as well, she might have mobility issues, she might have health issues, she might not be able to support him, so he might not be able to live at home. But she really wants him to stay at home for as long as possible, hopefully till the end, but it's becoming more and more difficult. So I've been supporting her as well. So I would say really that I support both people the people living with and the caregiver and I also support two other families. So I'm only supporting three at the moment and, to be honest, that feels enough, because I want to dedicate and give my all to those three families, rather than try and support six or eight and then be overwhelmed because emotionally it's tough and I invest so much into it. I want to be there with these families and give the best I can. So I want to be effective in that.
Gina:But the other family I support are two wonderful people, husband and wife, who are both living with dementia. One's got Alzheimer's and one's just been diagnosed but has probably had it for several, a couple of years mixed dementia, so living with vascular and Alzheimer's. They've got two children, one that's local in Exeter who's got some health issues and one that lives in Australia. So I'm basically was asked two years ago if I could support them just socially. Initially once a week, so once a week actually it was once every two weeks I'd go around and take them out for lunch or whatever, because they're very capable, they don't need personal care, they're very capable. One's 95, one's 88. So putting them out once every two weeks, that's now once a week.
Gina:But now because they need more support and there's becoming more safeguarding issues around, the fact that, um, the husband goes out sometimes and he doesn't get lost, but he's not really that overly steady on feet, so it's becoming a safeguarding issue.
Gina:So I'm supporting both of those and I'm also giving regular updates to their daughter in Australia and with the time difference that can be challenging but we make it work. So she'll message me at night, I'll message her in the morning and I'm trying to, at the moment, help them navigate the next steps, which is potentially to go into a care home, possibly for respite, because neither of them want to go into that space. They're frightened, they want their independence, they're very independent, they're very private. So I'm working with the local older people's mental health team and I'll be soon speaking to a social care assessor to get a mental capacity assessment for both of them and a social care needs assessment for the next step. So I've kind of fallen into this by default, and maybe enjoying is the wrong word, alison, but I am really finding, in a way, some skills that I didn't realize I had, which is enabling me to support everybody in the family in different ways, and I love that. I really do. And you're growing yes, I am as a person.
Alison:You are growing, I am growing and I learned so much from people.
Gina:I love them.
Alison:Yeah, yeah. Well, that's pretty evident to me across the sea, thank you. So you have some surprising things that you do. You have a radio show that I'd love to hear about, and you've also authored one book already and you're working on a second, so let's talk about those two things.
Gina:Yeah, right, so firstly my radio show.
Alison:I love it. I love it, I love it too.
Gina:I love it. So that came by default nine years ago now. So I met a lady who because our local radio show which when I say local, it's a community radio show and it's called Sonic FM, 106.8 FM, and it's a community show, and everybody that presents or has a show on there, whether it's twice a week, once a week, once a month or whatever, is a volunteer. So it's all very much voluntary. And when I started out on this mission around dementia, about thinking how we can make dementia more accessible and people more aware of it in Exeter, I just wrote to the show the general email address and I said hi show, hi radio show, I'd love to chat about what I want to do or my vision for Exeter, and they kind of it goes out on like a to everyone that's on that has a show, and then it's just basically picked up by everyone who wants to pick it up. And a lady picked it up at the time and said I'd love to have you on my show. So I went on the show, really enjoyed our chat. I think I went on again, maybe a few months later or a year later, and she said oh, you've got a great radio voice. You should do a show about dementia. Oh god, no, I'd be way too nervous to do that. I like talking, but to actually present the show I'd be really scared. Um, and also I said, to be honest, I don't have time. And for me, you know it's a lot of work, you know from the podcast, you've got to find the people who might come to you, like I did, and then you've got to talk about time and do all that. You know it takes a lot of work and, again, like I said, it would all be voluntary. But then I must have chatted to Pat, who's a producer who produces my show now, and something came up and I said I actually like the idea of it, but I'd be a bit scared, but I would, I do like the idea of it. And they said well, there's actually a slot coming up on a Saturday when there's a fifth Saturday in the month, so it would be no more than four or five shows a year, which for some people they'd think, oh god, that doesn't give you the continuity because, um, if you're nervous about presenting one, it's like you're doing it for the first time every time, because it's only four or five times a year. But also it means that you've got time to be able to put your all into it. Anyway, long story short, I went for it. So Pat has been producing my show ever since.
Gina:So although I love the idea of being able to do it all put the music on, do all this, do all that my drive is bringing guests on, all sorts of guests, all sorts of backgrounds, um, choosing the song, getting them to choose their song choices and basically chatting to them. So it's a two-hour show. It's quite a long show. Um, when I first started it nine years ago, I had three guests in um, so I'd have one guest for 20 minutes, then a quick gap, then another guest, another guest, and it was like a little factory going on in that, and mainly at the time there were people coming into the studio. So it's quite logistically challenging. And then after a few years I then thought actually I think two is enough, so I could then have two guests, a 15 minute start, one guest for half an hour, a little break and then another guest for half an hour.
Gina:But also I wanted to reach out, especially around COVID time I wanted to be able to do and I couldn't do it in COVID because obviously we didn't meet and things for that couple of years. But I actually did stuff on audio which I sent to the producer and then he was managing to put it out online for me. So I wanted to have all sorts of people on, not just people in the studio, although I do prefer the whole face-to-face. When you've got that energy in the room, you know life has changed. Now we do things online and on the phone.
Gina:So so it's it's if it's not face-to-face in the studios, it on the phone, which can be difficult sometimes because you're not seeing them, you're on the phone. And when you're passionate, like me, and then I'm talking to someone that's really passionate, it's hard to interrupt because you don't want to interrupt. So I've started to learn that we either have to have a word where when I say it they stop, or we agree that after a bit of time and I ask a question, they hesitate so I can then come in. Otherwise it can be quite hard and um. But yeah, I just really really love being able to showcase and share people's resources, people's passions, people's fears, people's projects. I've spoken to people with dementia and we've cried together. I've spoken to people with dementia and we've cried together. I've spoken to family carers and we've cried and laughed together. I've spoken to charities, care home managers, all sorts of people, and every single time I just love it and that's part of it too.
Alison:It's you want to honor them and their story. You want to honor them and their lives, and so you want to do a good job for them as well as for you yeah yeah, I just want to say, um, there may be some background noise that folks are hearing, and it is River the dog. I think he's snoring. Oh my god, is he? I think I hear him.
Gina:I don't hear a thing and I'm sat next to him. Oh darling, he's literally because he likes to be included everyone. So I'm sorry listeners, he's very chilled. I'm just going to move where I am.
Alison:Oh, it's fine, I think, as long as they know what it is, if it comes through, oh darling, he's got his eyes open.
Gina:I couldn even hear that. That proves that my hearing is going.
Alison:I think he's close to the mic and I think that's why, and he's my little comfort.
Gina:He keeps me safe and in fact that makes me think you know about dogs and therapy, and he's a huge therapy for me. He's changed my life. I've had him nearly six years. Um, the idea was actually initially just slightly digressing, alison, that he I did plan for him to be a therapy dog so when I did my work I could take him with me. But unfortunately he's a little bit reactive, which is a shame, so quick movements, things like that, can startle him. So he's not safe to be able to take that, although I can take him sometimes if I'm going in for a quick visit. But I wouldn't be able to use him as a therapy dog for that reason. So he's my therapy dog and that's important. It's very important. He keeps me on the straight and narrow.
Gina:So we talked about my radio show, which, yes, I love. I think it sounds fabulous. I can't believe I've been doing it for nearly nine years. So big shout out to Pat for producing it for me. And also, nearly nine years. So big shout out to Pat for producing it for me. And also, although it's voluntary, I do have to pay an annual subscription and I'm very honoured for the last few years that Jo, whose husband I support on a Monday, pays for that subscription. So shout out to Jo as well, and that's in memory of our dad, bernard, because she's dedicated to her dad, who loved music and loved the radio. So here's to Bernard.
Alison:I love the recipe for that show. Like you've got the songs and you've got your guests suggest two songs that mean something to them and you've got their stories or whatever you're speaking about and your intro and your outro. Like that's awesome, do you know?
Gina:what, over the last nine years, I've literally reached out to people and I've just said, would you like to be a guest on my show? And no one has ever said no and no one's hesitated. And I just reach out to not random people, but people that inspire me, and I've never, ever had to think twice, oh. I've never had to think, oh, who am I going to get? This time I've just got somebody, whereas if it was more regular it would be more difficult. So actually it really fits, um, because if it had been something like once a month I think it may be that I've had I would have to call it and maybe not continue doing it because it would be too much. Um, but, um, I love it and I will continue as long as I can.
Alison:I like the idea. Maybe I should do that wherever there's a, a fifth Saturday, and in a, that's when I'll do a podcast, maybe that's a good idea. Yeah, yeah, definitely so let's talk about your book, your first book and the one you are now writing as well.
Gina:Yeah, ok, so United caring for our loved ones living with dementia. So let me give you some context to this. I'm so proud of it and actually everyone thinks when you're a published author, you make loads of money, you don't, alison?
Alison:you don't.
Gina:And I never, ever ever did it for money. In fact, one of the big things about my life, all the amazing voluntary work I do although some want to say amazing, that sounds like I've got a big ego but I mean all the brilliant people I work with in the voluntary sector I love, but I need to be paid sometimes.
Alison:I know I get that. It's hard, isn't it yeah?
Gina:I find a lot of people in the same sort of sphere as me go through the same thing and it's really hard to juggle. What you can do voluntary, you know, and you need to earn a living and things so I just wanted to highlight maybe I'm doing this for myself is that people think you're a published author, you've got loads of money.
Gina:It doesn't work, unless you're JK Rowling, of course which I'm not um, so, um, basically, this was born out of love and holding this book in my hand is so humbling, exciting, even though it came out two and a half years ago. But for the context, it actually came about through COVID. So Tony, who I've got to talk about, tony, so Tony illustrated this book. So my book is a short read. We call it the Little Book with a Big Heart, so you could read this in an hour, but the stories will stay with you. The stories are all true, with the exception of one, which is a composite story I made up. So Tony Husband was.
Gina:I say was because he is sadly no longer with us and I still can't believe I say was, but actually he's very much still a part of my life. So I go from was to is. I like saying is, because he'll always be a part of my life. If it wasn't for him, there would be no book, and if it wasn't for him, there would be no second book either. This book is illustrated with black and white illustrations. Throughout. There's about 130 illustrations, so there's actually not that much narrative, surprisingly, but the illustrations really accompany the narrative so well.
Gina:So basically, in 2019, tony and I talked about or actually, yeah, late 2019, early 20 when Covid struck. We've sort of done a lot of creative stuff, as in done projects together, so so I did some writing. He would back it up with an illustration and I met him by default in 2017 when he came down to Exeter from Manchester to talk about his book, which he did before this one in 2014, because his dad lived with dementia. So he wrote a book called Take Care Son, my Dad Living with Dementia, which is his narrative and, um, his images, and it's the colored images. Fantastic little book. Um, again, a short read. So he came to exeter and presented this book through a powerpoint presentation. I was so drawn to it and him. We had a chat afterwards, exchanged email addresses and then, a few months later, I asked him if he'd come back to exeter to present again and go do the same thing, and he did. Um, I said we don't have any money, I'm afraid, at the alliance, but we can pay for your overnight accommodation, your train trip. So he obliged and he's such a generous man anyway another long story short of mine. Um, we connected and we did some work together over the years. So that was 2017.
Gina:In 2020, we talked about possibly doing a book and he liked the idea. So we just thought what could we do? And I said I'd really like the idea of some true carer stories that we could find through my network and his networks to tell their stories, that people that want to tell their stories. So we came up with the idea and we put a proposal to the publisher that published tony's original book, take care son, who was interested. So then they accepted the proposal.
Gina:So then we had to go out and find some people who would be interested in sharing their story. So it's a story in my life. Build it and they will come. Yes, absolutely. So I reached out to lots of different people, some charities and people um, not all in one go, but we knew that roughly, that we'd have space for six or seven stories, um, although we didn't go into detail about how it would look in practice you know the end result but we just thought, well, let's start with a story. So found the first family um story and then found another one and then found another one, and this, of course, progressed over sort of 18 months. So we started with the idea at the end of 2019 and from that to publication it took about two and a half years.
Gina:So creating a book, however big or small, is a long process. But I see it definitely, even though that, even though that's not the story of my life, because I'm somebody that likes to get to the end result quickly. But now I realize the joy of life is the journey of the ride, not the end result, and I love that sort of little quote. It's not the destination, it's the glory of the ride nation, it's the glory of the ride um. So I really did, tony, and I really enjoyed the ride with these stories finding people to speak to over zoom, because it had to be that because of covid.
Gina:So, first of all, finding the people, then speaking to them, them sharing their stories, me asking them lots of questions, curious questions, and then going away creating a narrative, tony coming up with some draft pencil rough cartoons, us then going back to the family and saying what do you think of this? Bear in mind, alison, we had to really edit it down. So it was important for both Tony and I that we really got to the heart of the story with a limited amount of narrative, which was actually a real challenge. It is a challenge, it's a skill. Oh yeah, well, I didn't really realize at the time, but actually, for some reason, tony and I, we just both seemed to. Even though he was drawing, you know, he was very involved in the narrative and editing as well. So we worked together really collaboratively on it and every family was really happy with what we got to. There were a few tweaks, but not many. Considering, um, there were a few changes along the way because actually, somebody sadly died during the time that one of the stories, one of the last stories, came about and actually, um, the story changed because of that and then, you know, so it was an amazing process, um, and then seeing it, of course, in the manuscript form and then working with the designer and the editor and the publishing house to bring it all together and see what it looked like on the manuscript, you know, and then to see it and to open the box of books, because what happens, certainly with our publisher, is you get 10 books each free, um, and then after that you know we do have to buy our books and actually I bought um 50 books recently, so we get quite a good discount, but we still have to buy them ourselves, so I bought 50 and they arrived this week actually.
Gina:But what's really exciting about this book I must say it, alison is there's a charity called the Reading Well Agency or the Reading Agency. They're called and they, over the years, have come up with a selection of books that have been under a certain sort of topic. So there might be a dementia topic, there might be long-term health conditions or teenage mental health, something like that. I think they've got about four or five catalogs of books specifically under this remit called Reading Well, and they decided they would have a group of books around dementia and their first selection came out in 2015, and that's roughly just after I started this mission around dementia in Exeter and I remember the the books came out there, about 35 books that were chosen.
Gina:And they were chosen, natural, all the national books there were around dementia, from people living with dementia, from caregivers, from academics, from charities, through a consultation process. So they selected these 35 books and then they were basically. What that meant was all those books were available in all the libraries in England and Wales, which is an amazing thing, and I remember hearing about that when they were published at that time and then about two years ago they wanted to rejuvenate that book list and reduce it down from 35 to 20. So over the last couple of years they were put a consultation out. There were people with dementia co-producing with a community interest company to make sure that they were very much involved in the whole process, selection, and they had a criteria the reading agency they wanted to meet certain books had to be excellent, they had to reach certain things, um, and they reduced that, that long list down to a short list of 20. So last spring those 20 books were well, the authors were told who those 20, informed who those 20 books are, and this is one of them.
Alison:One of 20 books. That's awesome In every library.
Gina:In every library in England and Wales and it was officially launched in Dementor Action Week in the UK in May and it was actually launched officially at the House of Commons in London. So basically what that means is in all libraries in England and Wales, and also it's just been translated into Welsh, wow, wow. So I got a Welsh copy in my post box or through my letter box in December.
Alison:So it's now in Welsh. Wow, can you read Welsh? No, no, no way, it's very complicated. Just looking at the word, it's like wow, it's very feel good, gina. It has to feel good and knowing that your stories are helping other people to relate to get resources, to get encouragement that's so empowering and so important.
Gina:It is really absolutely. And that's been the amazing thing, because what I did and a lot of people also think that when you have a published book that the publisher does all the sort of marketing and all that sort of thing. They do a part of it because that's obviously within their remit. But I spent hours and hours and hours reaching out to people that I knew, saying to them before it was published can I ask you, please, could you read my book? And hours and hours reaching out to people that I knew, saying to them before it was published. Can I ask you, please, could you read my book? It will only take you an hour to read. If it was a big book it might be another story. But you know, could you read my book and in return it's confidential because it's not out yet Could you write a review for me? Although it won't say be marked on Amazon as a sort of five star or whatever review, it could still be added to underneath the product description as a review that's been had.
Gina:So I reached out to a lot of people and, to be honest, they all came back to me. I did have to chase a few, but they all came back to me and I got some great reviews and that included people living with dementia and their carers. That was really important for me. So when you go on Amazon, you can see in the reviews, you can see from people living with dementia and their caregivers the impact that it's had on them, and I think one of the main themes running through feedback wise was especially for caregivers is it was a really accessible read. It didn't take ages. If somebody wanted to pick up one of the stories and read it, it would take 10-15 minutes. Caregivers, for any diagnosis, for any condition, are limited on time because they're doing what they do.
Gina:They are limited on time. They really are so that's what has made United very accessible, and also bringing it to life through visuals and cartoons has also been a big draw. So that was one of the things I think that has enabled United to be on that book list because of those reasons.
Alison:Yeah, it's unique and I'm really excited and interested in the illustrations that Tony made. I haven't seen them yet, but I know that I like looking at pictures as well as reading, and I think that that's that's the unique piece.
Gina:I love that. You are going to love it and I'd love to know what you think about it when you read it, alison, because I know that you'll find it interesting your background and your podcast and things and and also I know you'll read it because it's short whereas some people say, oh, I'll read it, and they have every good intention to read it, and I'm I'm guilty of that, and then I don't. And then the person says, oh, did you read it? Oh well, um, actually no, and then I feel guilty. So I love the fact that it's short and accessible, because it does draw people to read it, which I'm really pleased about.
Gina:And actually and this was going on to your question previously, which is about the next book so when we published this book in June 2022, within about three or four months I said to Tony I want to do another one. He said let this one settle, let it simmer, let it reach the world, let it be felt in the world. Hold your horses, you know, sit with it. He's impatient in other ways and I'm impatient and things like that I'm like. On to the next thing. Don't rest on my laurels. Anyway, we talked about it, we talked about another book and I mentioned it to the publisher or whatever. And he said again like Tony, let's just see how United goes. You know, let's just see how United goes. But a few months after that, tony and I did say that we would definitely think about doing another one, um, and then, about 18 months ago, we talked about it again, um, and then I put a few notes together about how we would try and do this and what it would be, how it would be different, you know, would it be a follow-up to this, would it be in the same vein or whatever? And sadly he died within a few months of that um, which I was so devastated about I cannot tell you and not just me, the world, the country.
Gina:He was an incredible man, an incredibly generous, humble, funny, dry, sensitive, creative genius. Oh, I could come up with a word for every letter of the alphabet. He was amazing. So I just thought, well, I'll never do another book. And if I did, well, I say I'll never do another book, I'll never do another book with illustrations, and I can't see me writing a long book. So I just thought that won't happen.
Gina:Um, but then, when we launched the reading well initiative in May, I met the publisher who published our book um in London, because he came to the launch and I said I'd still love to do a book um, but I guess it's not going to happen because it's just little old me or whatever. And he laughed and smiled and he didn't rule it out and I said I've got ideas and that was that. And then I thought I won't be able to work with another illustrator. And when I say that it's not because I would compare them to Tony at all, it's not just about working with an illustrator, it's about how you work with them. It's not just about finding the maze an amazing artist, because there's loads out there. But would I be able to work with them? Would I be able to collaborate them?
Gina:Tony and I had a great relationship in the fact that he'd do a drawing and if it wasn't quite right I'd say, oh, I don't like it. And I was scared to say it to him because I didn't want him to be offended. He said just say it. And and I said the thing is, it's not that I don't like it, but there's something that's not quite right and it would be like where the hand is or whatever. So I kind of did a bit of directing with his drawing in some way. So we had that great relationship and I thought I wouldn't find that with someone else, and also, the person that I would need to find that would be potentially an illustrator, couldn't be driven by money and ideally would be humble like Tony, and also somebody that I would feel like I've worked with, so I just ruled that out.
Gina:And then my friend, jo, who I mentioned earlier yeah um is actually a children's author, so she's done three children's books and her friend, mark, who she'd mentioned about, illustrated it. So he, he does fine art but he also does cartoon. He's a fantastic artist. And she was telling me about like the process of how they work together, and and then I was saying about another book idea and she said I don't know how you feel about this, but I just wondered would you be interested maybe just to speak to Mark and see you know, a if he's interested, b if you like him, and if you could work with him. What do you think? And I sort of said, oh, I'm not sure I'd feel if I met him, maybe I didn't want to work with him, I'd be a bit nervous about telling him that. He said oh, you're overthinking it. Long story short. Again another one of them. I met him, we hit it off. I knew he would be a brilliant person to work with. He felt I'm not saying he felt I would be brilliant to work with, but he was definitely interested to work with me. So, um, about six months ago I started working on another book proposal and I needed to create the basic, the overall proposal, and give a draft story and some draft illustrations, which I did sent into the publisher in October and then at the end of November, he came back and said, yes, wonderful.
Gina:So basically, I am going to be spending in my spare time not that I have much working on this book for the whole of 2025. It will be similar in the fact that it will be illustrated. There will be more narrative, it will be based a lot on my personal experiences of working with families. It will be also anonymized so that their names will be protected. There might be some sort of adaptions to it to provide anonymity and it will also be based on other contributions and research, because there's certain topics I want to cover. I want to cover rare dementia. I want to cover planning ahead and the thought that we're all going to die one day and that person with dementia will die and they might want to plan for that. If I want to talk about that, I want to talk about comorbidities, people that are living with dementia and another diagnosis. So I've got lots that I want to cover.
Gina:And, yeah, so I have a working title. Would you like to hear it? Is it called Reunited? No, it's not, because it's going to be different. No, it's not, but nice thought. So it's going to be called. It's a longer title and, like I said, it's a working title. The publisher really likes it and so do I, and it's going to be called, when Time Aligns, the Stories of Care from a Dementia Companion. And there's a number of reasons why I've chosen that. I did a bit brainstorming around it. I wanted it to have um dementia companion in it.
Alison:That's who you are yeah and that's who I am.
Gina:Yeah, so, um, the dementia companion is actually going to be called Sienna, so I've already chosen the name. And actuallyienna, the name Sienna comes from the composite story in United. So I said to you earlier on that all the stories in apart from one are real stories. There's one story that is a composite story. I wrote that and it's called Sienna's story, and the reason I wrote that is because, a we had space in the book for another story and, b I looked at things that I felt were missing in some of the other stories that could be brought in.
Gina:So I featured some of those themes in Sienna's story. So I'm using Sienna as the vehicle to share those stories, that Dementia Companion stories, and I wasn't going to have care in the title but, as the publisher quote rightly said, you know, some people might not know what a dementia companion is. So stories of care from a dementia companion shows that they are caring stories and it kind of brings that a lot. But I wanted to have a little sort of something at the beginning and I chose I've come, came up with about 12 or 15 ideas for the beginning part of it. What I didn't do, which is silly I didn't go on the internet to see if those were already in existence and most of them were. So I've now come up with when time aligns, and I just feel, once people get used to the title and hear it more, you know when it's published, um, they will like it. So I sat with it and I actually really like it. So I don't know what your feeling is.
Alison:It might not grab you straight away, but I think when you sit with it you might make sense of it, that does cover everything in your book, everything that's covered in the podcast, and that is a challenge. But I do like, when time aligns, I do, I do yeah.
Gina:So, and that's what like with United, we had United. So when you refer to it, I refer to it as United rather than Paris. But obviously, when I refer to it, I'll be saying when time aligns and it will just become yeah, it's three words, but it's still. I won't say the whole title but when time aligns because if you think about it, you know time is aligned for me to meet the people that I support um time aligned for me to do my degree and link into my childhood thoughts and ideas about dementia. So I've met you time. Time is aligned. I know that was through Sarah, which, thank you so much, sarah. I haven't even told her that I've connected with you. Time is aligned. I know that was through Sarah, which, thank you so much, sarah. I haven't even told her that I've connected with you.
Alison:I must do that before this is released.
Gina:I will do that. Yeah, so that's the title Right. Let me share this with you. I think it's quite interesting. So, number one when time aligns, the phrase feels reflective and poignant, suggesting moments of connection, connection, clarity or synchronicity, and in the often unpredictable experience of dementia care, and I think it draws curiosity and emotional engagement. And the stories of care aspect of it is this subtitle sets the expectation that the book is about personal and human experiences and it's warm and relatable. And then, of course, dementia Companion establishes the author's role, creating a sense of trust and authenticity, companion obviously being a gentle, empathic term. So when you bring those three aspects together, I think it really encapsulates the book title. I like the idea of sharing that explanation.
Alison:I like it too, and for me, when time aligns, you know we often talk about their reality is not reality, but it's their reality and it's in their time, and I think that that jumped out to me when you said when time aligns yeah, me too as well.
Gina:Yeah relate to them. Yeah, so in that time? Yeah, absolutely so it's going to be. It's going to be a big creative project. Um, the idea is for the manuscript to be handed to the publisher at the end of the year, with a september 2026 publication date. Oh wow, yeah, I'm excited for you.
Alison:Thank you so, gina. Is there anything else you want to add about what you're doing or what you think the listeners would like to hear?
Gina:I want to sort of create my own bespoke dementia training that I can adapt for families, and I know there's a lot of training online where people do big training and it's very, very expensive. I'm not saying I'm going to undercut that, but I want to reach families maybe. So, although I will be charging for it, I'll make it realistic that people can pay it. But what I'm saying to you is that training is something that I want to really do more of with small groups, because I love imparting information through small groups, because I love imparting information through. So, although there will be resources shared, there will be human stories shared which will enable people to relate to that and dialogue to be created in a safe space. It's something I really want to do. I love that. I love safe space.
Alison:I think it's important to provide a safe space, and caregiver stories are huge. Imparting information You're very good at that and it's lovely to meet you and how can folks reach you?
Gina:I'm on linkedin. I don't have a website, but I'm on the, the extra dementia action like website, um, because obviously I founded that so you can get there. And there's also a facebook page for the extra dementia Dementia Action Alliance. I'm on Twitter, aka X, although I struggle with the X I still in my head is Twitter. I don't do Instagram and TikTok.
Gina:Can I just share one thing before we finish? I just want to say well, two things actually. One is I know this might sound obvious, but being in the moment with a person living with dementia can teach you so much about their life. It's empowering for them, as every time this has happened to me in my experience, I've witnessed their face light up and it just shows that meaningful connection. And you can also learn so much about the person because they might talk to you about what they did when they were 25 and they could be 80 and you would never know that, possibly, and you then find that out about that person and I think that's wonderful. I love that. I wanted to share that.
Gina:And the other thing I wanted to share because it's it's the bane of dementia and I hear it all the time. I hear these words challenging behavior. I don't like it. I don't like the words challenging behavior. So there's lots of different words that people use, so let's just say, for the sake of this situation right now, behaviors that challenge. Okay.
Gina:So they are behaviors that challenge us. They challenge us as people and the way I see it is these behaviors are unmet needs. They are unmet needs. That unmet need could be pain, it could be a urine infection, it could be boredom, it could be loneliness, it could be sadness, it could be frustration or it could be simply needing a hug. So I just don't like people with dementia being labeled as having challenging behavior, because we all have our needs and we all need them to be met in ways that we can sometimes articulate. But people with dementia, especially the later stages, are unable often to do that. Um, and we need to be that private detective, we need to be curious, we need to find out what it is that's going on for that person, that's difficult for them in that moment I agree, amen, I will say amen, amen.
Gina:Allison, thank you so much for allowing me to talk to you. We spent a long time here and I've loved every minute.
Alison:I did too, and I am so grateful that we met and I want to continue our relationship and that's not weird.
Gina:I don't want that to be weird. Um no, I was going to say the same. Alison, a hundred percent. I was going to say the same.
Alison:I wish our time would have aligned better that I would have known you when I drove through Exeter this summer.
Gina:I know, but you never know what might happen in the future, and you never know, I might turn up in Canada one day. But the main thing is we are connected, we are aligned now and that's fantastic.
Alison:All right, well, thank you so much as well it's been a pleasure oh, thank you.