Shownotes
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Dementia Adventure has been at the forefront of providing fully supported, small group short breaks for people living with dementia and their carers for 15 years. Our supported breaks offer more than just respite; they provide meaningful, purpose-driven experiences that significantly enhance the quality of life for both people living with dementia and their caregivers.
Harriet is on the edge of Wales as much of her journey this week takes place along the historic Offa's Dyke Path.
She's focussing on the power of storytelling and our own personal stories. The memories we're making and the ones we reflect on.
You'll hear how postcards and artifacts are being used trigger memories and there's a stop at a care home in Shropshire for a singalong with actress Sian Reeves.
You can listen to Harriet's playlist on Spotify. Each week she's adding songs to match her mood on her epic walk!
Transcripts
But the sound of the wind in the, oh they're Silver Birch. Yeah, it's the sound of the wind in the Silver Birch it's so. It's such a delicate rustling. Sounds almost like the sea. And these hillsides, where they're not forested, they're just covered in bracken. Imagine whole hillsides just covered in bracken. And the bracken is like waves, like green waves in the sunlight and in the wind, it's sort of doing exactly what the sea does.
It's kind of rippling. So the breeze is rippling through the bracken and making it kind of shimmer in the sunlight. It's really, really. This is such a great way to start the day, I gotta say. I feel like the universe is really giving me a massive hug right now and saying, everything is good.
to:That great feeling I get when I step out and the walk begins and I just feel, yay. Let's go.
Harriet Thomas:Welcome back. This week, I'm wandering along the Offa's Dyke path, right on the edge of Wales. This ancient trail carved by king Offa in the 8th century to mark the boundary between his kingdom of Mercia and Powys, what we now call Wales. It's not just a walk through history, it's also a journey that's made me reflect on something deeply personal. Last week, we delved into the theme of food, and it got me thinking about how each of our lives is a rich tapestry woven with experiences, memories and stories. It's all too easy to overlook the depth of someone's past, especially when they're living with dementia. We might not always see the full picture of who they are or who they've been. That's why this episode feels so special to me.
Although I often walk alone, I also have the chance to meet and connect with different people, uncovering their unique stories. It's incredible how these moments of connection can reveal so much about the richness of someone's life, people I would otherwise never have had the pleasure of knowing. I was fortunate to be joined by Sheila Jones for part of my walk. Sheila owns the cottages used by Dementia Adventure for holidays, and she has some brilliant stories to tell about the area.
Harriet Thomas:Oh, really?
Sheila Jones:They say it's something to do with a landslide or something, but of course, that's led to lots of stories that it happened during the crucifixion and that's why it's called the Holy Mountain. Oh, so there's lots of stories. I think I got told as a child that the devil stood up there and stepped off, and as he stepped off, his foot slipped and pushed it down.
Harriet Thomas:I like the myths and legends that surround natural features. So I'm talking with the lovely Sheila Jones, who is walking with me today. And we've just had a really nice lunch at Sheila's nephew's pub, the Hogs Head, and I'm also with two of Sheila's friends who are from the amazing sewing group that she started up, which I think you called. You said it was. I mean, Sheila's described it, that there's. Sheila's a great quilt maker, but there's also dressmakers and bead makers and so on.
Harriet Thomas:But I think what you said, Sheila, was that it's really about friendship.
Sheila Jones:Yeah, friendship, mental health, being there for each other. Not always sitting in the same seat when you come in, sit with somebody new, have a chat and perhaps go see gardens. You know, we're not confined to meeting every Monday night. We can get out and about and do other things like we have today.
Harriet Thomas:And what's the name of the sewing group?
Sheila Jones:The Sewciopaths
Harriet Thomas:So it's a sewing group with a sense of humour. I love it. And also. So basically, Sheila got in touch with someone from Dementia Adventure, because Sheila actually runs some cottages and holiday barns and she, three times a year, has a family brought by Dementia Adventure with a Dementia Adventure supporter with them. So, Sheila, I just wondered if you could just tell us a little bit about how that works.
Sheila Jones:Well, at the beginning of the year, they pick their midweeks, which they come Monday to Friday, four nights, and they usually come in a minibus. And so it's usually, for us, it's March, July and October. And while they're here staying, every day they take them out, give them good trips.
Harriet Thomas:And I should say we're walking through the beautiful Monmouthshire. Are we in Monmouthshire? It changes a lot, doesn't it? As you walk, you're in a different county. Oh, okay. So we're walking through. Well, it's the boundaries, isn't it? We're walking what, what you'd call the boundaries. So, yeah, Offa's Dyke is the boundary. Exactly. So we're walking through this beautiful boundaries territory.
And if you've never been here, it really is heavenly. Quite hilly, but lots of really beautiful, very, very green at this time of year fields and masses of oak trees everywhere. I can imagine it must look lovely in autumn. It's very. It looks very abundant. Green, rich. It's really, really beautiful.
And then there's some sort of bigger hills in the background, aren't they? The black mountains, the Skirrid, the Sugar Loaf. Sugar loaf. Exactly.
Sheila Jones:Blorenge is over by Abergevenny. I think this is the Graig in front of us, is Grosmont is the other side of the Graig. And that's also part of the Monroe Valley walk.
Harriet Thomas:Yes.
Sheila Jones:Which is really lovely.
Harriet Thomas:Yeah. It's a sort of walker's paradise, I would say. And what about a cyclist? Do cyclists enjoy this?
Sheila Jones:Think Monmouth is trying to really push the boat out and get really good cycle paths in. Yeah, really good. They're really working hard at it.
Harriet Thomas:That's great. We really enjoyed Monmouth. The town of Monmouth I thought was absolutely beautiful. Absolutely loved it
Sheila Jones:It's got a lot of history with the King. The King Henry and that.
Harriet Thomas:Incredible, isn't it? Absolutely, yeah. I sort of felt that I needed more time to be there and just soak in the atmosphere and learn more about the history.
Sheila Jones:How is it? You don't sound breathless and I do?
Harriet Thomas:No, I was going to say as always, it seems to be whenever I record something, I'm walking uphill. I don't know why. And so I should explain we are walking uphill, as always, but I think probably around here you tend to be walking uphill or downhill most of the time, don't you? Because it's pretty hilly. But they're not bad hills. No, they're just rolling hills, I call it. So I'm just recording that we're on this lovely path, the Offa's Dyke. It's really well signposted.
The paths are really lovely. And we got lost. We've gone the wrong way. And this is because of walking and talking. This is a warning to all of you out there when you're walking and talking. Walk and talk, but check the map every five minutes. So you don't go 20 minutes out of your way.
Harriet Thomas:Well, that was quite a detour. But as I've learned, some of the best things happen on a detour. The real highlight is usually getting to know other people. Today is no exception. And I'm really grateful to be here with Sue and her husband Keith at the Bean box cafe in Hay on Wye.
Harriet Thomas:So, Sue, if I can ask you to introduce yourself and just tell us about the cafe.
Sue Hodgetts:A friend of mine, Trish Richardson, she started it off and I got involved helping, and we just started off as a social cafe, somewhere where people could come along in a safe environment where there was no problem with them, you know, sort of going somewhere where somebody might not like the behaviour or, like, somewhere where they could feel normal.
Harriet Thomas:You like.
Sue Hodgetts:So not judged? Not judged, exactly, yeah. And interestingly, when we first started, which is probably about eight years ago now, there was a lot of stigma and we weren't even allowed to tell people who was coming to the cafe because someone knew that they had dementia. It was very much like a secret thing. People kept it hidden.
Harriet Thomas:That's really interesting you say that, because I know certainly when my mum, well, before my mum was diagnosed with dementia, it was very clear to me that there was something very wrong.
Sue Hodgetts:Yes.
Harriet Thomas:And my dad was very much like, no, no, no, she's just tired. She's just been a bit poorly and, you know. So there was that denial, is it? Yes, very much a denial. And I can understand that, that he was in denial, because obviously it's such a frightening thing to happen. But also there definitely was that stigma.
Sue Hodgetts:It's interesting. So the cafe was created and we run it. We were running it once a month and then we decided to open a second one up in Clyro. So one was in Cusop, which is on the English side of the border, because we're right on the border here.
Harriet Thomas:Yeah.
Sue Hodgetts:And the other one was in Wales, on the Welsh side, during COVID We sort of had to stop, of course, but then when we started again, I couldn't get enough volunteers to do the two, so we just do it once a month now in Clyro. And we decided. And numbers sort of dropped off a little bit because people were scared to come out. So I decided to open it up to people who were at risk of dementia. So we said, it's not just people who've got a diagnosis, it's anybody who is lonely on their own, possibly at risk of dementia. Just come along if you want some company.
Harriet Thomas:I can imagine having a cafe where all sorts of people can come.
Sue Hodgetts:Yes.
Harriet Thomas:Gives that many more opportunities for social networks and just for almost the brain to be stimulated.
Sue Hodgetts:That's exactly it. And also, I mean, what's lovely about our cafe now is we've got a link with a local primary school and they come in every... Well, when they're in school, school term time, they come in as well. So we always have a light lunch and then we do an activity, a creative activity. So it can be anything. It might be drawing, painting, it might be making something, it might be singing, poetry, it can be anything. And even gardening, making, you know, planting things up. But whatever it is, if we do have the children come in, that sort of lifts the spirits of both sides and it's like a joyous thing, really.
Sue Hodgetts:It's lovely.
Harriet Thomas:My experience as a parent was you're ferociously busy the whole time, you know, that's how it was for me. I was a working mum and, yeah, it was difficult to slow down, whereas my mum, for example, was a very important part of my life and my children's life because we would go to her house, she would kind of look after me and. But then she would. I sort of trusted her wisdom as well around the children and, and they loved being with her because she had time to be with them and. Yeah, so it's, it's, it's really lovely to bring those generations together, isn't it?
Sue Hodgetts:Oh, definitely. Because the thing we are is quite centred around what the members want. So it's obviously led by the members, really, of what they want.
Harriet Thomas:How does that work? How do you, how do you create your schedule, as it were? How do you ask people? Is that just in little conversations that you might have through a session?
Sue Hodgetts:Yes.I mean, you tend to pick up what their interests are. I've got a chap who like, loves quizzes. So, you know, we'll do a little, just a small quiz, not too difficult, but something that everybody can join in and they love that. Somebody else is very artistic. And I've got a lady who can hardly see, but she loves art, so, you know, we'll do something that's not too tricky.
Harriet Thomas:Yeah.
Sue Hodgetts:So, yeah, so it's led by that. But when we did the travel thing, we got them all to write a postcard and so they were sort of doing drawings and writing a postcard of where they had been and children did it as well and the visitors who came and it was really lovely. And, you know, I had, like, when my neighbour actually is quite bad now in with living with dementia, he was sort of came alive. And he was telling her all about the Isles Of Scilly, where he went and drawing it all, and he just really loved it and it just. It's just lovely moments like that.
Harriet Thomas:I love the idea of a postcard as well.
Sue Hodgetts:The postcard was great.
Harriet Thomas:Yeah, that's very. I mean, I remember when I was a kid, you know, we'd always send postcards. That was the thing you so associated with holiday, isn't it?
Sue Hodgetts:Yeah, yeah.
Harriet Thomas:I actually sent one to someone, I think, on about. I think I bought it and wrote it on about the 7th day and I didn't find a post box the 8th day and it was all like, you know, I put it in the post box anyway because it's lovely to receive that, isn't it? It's lovely to be.
Sue Hodgetts:Well, your postcards are now your podcasts, I suppose.
Harriet Thomas:But I like the thought because I think, and it's interesting because with a postcard, I think it's a physical thing, I was gonna say the fact that they're writing and they're drawing, that really stimulates the brain, but also brings back memories. It's a very whole brain type activity. It's using your cognition, everything, isn't it? And yet it's all about connection.
Sue Hodgetts:Yeah.
Harriet Thomas:Your postcard, isn't it? Yeah. That's so lovely.
Harriet Thomas:Talking with Sue was truly inspiring. Her dedication to creating a welcoming space where people can share their stories reminded me of the postcards we talked about earlier, each one a snapshot of someone's unique journey. As I continued my walk the next day, I couldn't help but reflect on how each person's story, like those postcards, add so much colour and depth to our lives.
What's giving me so much hope is knowing that there are so many people out there who are creating these wonderful opportunities for families living with dementia. And I hope that by hearing their stories on this podcast, maybe you will be inspired to think, I wonder if there's something I can do. I wonder if I can start a memory cafe or maybe I can volunteer? Of course I'm talking as I'm talking as I'm walking, because I need to get to Kington before darkfall, before nightfall. And we had wind warnings today, so it's not meant to rain. It's a little bit cool, but it's not meant to rain. But there were wind warnings. And because I'm walking the Offa's Dyke, that obviously is a high path.
Not massively high, but it's still probably this section, the highest part is around maybe 400 metres. And that really makes a difference when it's windy. If there are windy gusts of 35 miles an hour, that's where you're going to feel them. So I'm just having to prepare myself mentally that I might have to change my route as I go along, take the safer option. And so I want to make sure I've got enough time to do all that and get to Kington before nightfall. Also, tonight is meant to be incredibly rainy, rainy and stormy. So I've actually.
I had a camping site booked, but I've actually decided to book an Airbnb as well. So I've booked an Airbnb because I just really. I don't mind camping when it's wet. I don't mind the actual being in the tent. It's the packing up the tent. It's the packing up the tent when it's soaking wet. It just makes it so much heavier. My tent is waterproof.I love it. It's really reliable. But, yeah, I don't want to do packing up when it's soaking wet. Every day on this D Tour, I'm walking through different terrains and landscapes, and right now I'm walking through a field of golden rye. Or it could be barley. To be honest, I'm not exactly sure, but this is the first arable crop that I've seen and it's ripe. It's the end of August, not far off harvest, and I'm walking through it. So just reminding me how every day I'm seeing and walking through something new. I've just walked onto one of those country lanes. I love walking along so much, and the swifts are rushing about above my head and the tall hedgerows are protecting me from the wind. It's totally quiet. The swifts are literally almost darting in front of my face. It's like a perfect moment. So it's day 27 of the 90 day, 900 miles D Tour and it's about 820 in the morning, and I'm walking out of the little village of Much Stretton. And I just had a day off yesterday, which was absolutely fantastic. I stayed with some very old friends of mine, a girlfriend that I've known from school days. So that was really wonderful. And obviously, I had a great physical rest. Two nights in a bed was really nice. But also, it happened to coincide with Shrewsbury Folk Festival. And so on Monday afternoon, myself and my friend went to the folk festival and we watched three amazing bands Mary Black, Kathryn Tickell and Elkie Brooks. And it was just an incredible, incredible array of talent and kind of different styles of music. And it was just so inspiring. And what I realised is that not only did this give me a physical rest, but it gave me a mental rest because the music event just took me to a totally different place.I wasn't thinking about walking or maps or distances or the weight of my pack or anything where I was staying. You know, it was just a total mental break and a total inspiration, a nurturing of the soul. It really was the most wonderful afternoon. And so I feel so refreshed today, mentally and physically and spiritually and ready for the next part of this walk, which is great. Today I'm walking too Much Wenlock. It's a shorter day for me today. I think it's about 22k, but there's a reason for it, which is that I've got the great pleasure of singing at a care home today. So kind of using music with people with dementia to reach out and to connect.
Harriet Thomas:And so I'm really looking forward to having that session this evening. So I wanted to get to Much Wenlock by sort of four or something, so I can actually have a little rest, have a shower before I go out again and do this music session. And what makes the music session even more special is that we're going to be joined by the actress Sian Reeves. So together, Sian and I will introduce some songs and music activities and hopefully bring a sense of fun and well being and connection through shared enjoyment of music. I've just had the most amazing evening of this walk. I'm here with Sian Reeves.
Sian Reeves:Hello, Harriet. We've met up at a care home in Much Wenlock. After you've walked 75,000 miles, she looks fantastic, everybody.
Harriet Thomas:It's so funny because I have had a long walk today. It wasn't 75,000 miles, but, however, coming here tonight, basically what we did is we've together, we've been doing some music for the residents of this care home, and it's just been such a complete pleasure and joy and what I always find, I don't know if you're the same, Sian, but what I always find is whenever I share music with people through singing and movement, it just gives me such a buzz and so much energy and so much joy and happiness and, you know, I just feel so good after I've done that. How does it feel for you?
Sian Reeves:It's lovely to share a project, you know, instead of being on your own. I was a bit nervous because this is my first one today, launching my album, "Remember This". And it's all like the army song. So I was worried about whether they would be right, whether they'd enjoy singing them. A gentleman got upset, didn't he? And so I was worried about that. But I spoken to him, and he was happy. But it was so nice to have you there. An old pro, you know, because you've done it a lot. And I'm just starting this, and.
And I've had a gorgeous time playing with you tonight.
Harriet Thomas:So it's so funny because. So I've been walking every day since the 1st of August. So we're on day 27. I have had a couple of days off, but basically what I do is I get up, I walk, I go to bed. That's kind of what happens. But in between that, and quite often I'm camping, so there's no wifi or anything like that. And then when I do have some wifi, I turn on my phone and it goes, bing bing bing bing bing bing bing bing bing bing bing bing. I had all these messages about coming here tonight, and I knew it'd be fun because I've been singing at my mum's care home, and I know that I always, I sometimes arrive slightly anxious that it's gonna be okay, and I always leave full of beans. Like, that was fantastic. Want to do more? So I knew it would be fine. And then when we came. When we arrived here at the care home, and Sian was already here, and I was like, there's Sian. It's great.Like, we're actually human beings. Like, I can touch her. She's right here.
Sian Reeves:Because I was driving here going, I wonder if she'll be there. I wonder if she'll have made it. Is this for real? Is this a real life meet? What will I say? Will I do it on my own? What will happen if I'll have to do it on my own? And we were saying, I'm just going to wing it, and you were going, I'm gonna wing it. But we actually did a really nice thing, didn't we? I knew that we'd be okay.
Harriet Thomas:You know, even though, like, on paper, it might seem, whoa, you're going to a care home and doing some music after you've walked. But no, because it's so great. Because it's so great to meet everyone in person, so great to do the music. So it is a massive addition to my walk.
It just really.
Sian Reeves:Find another one that we can meet you at! The Harriet and Sian show.
Sian Reeves:No.
No, thank you. Not if she's doing that slow one. Joan didn't like the slow one, didn't she? And she said it would have been fine if you'd made it faster, just up the tempo a bit, which I've now learned, ladies and gentlemen.
Harriet Thomas:I thought she was giving good feedback, actually.
Sian Reeves:She was.
Harriet Thomas:And there was a lovely man who was sort of to my left and he. He sort of gradually started singing in this kind of rich baritone voice started coming out and it was. I could hear him singing and then he started doing a few little bits in between the verses, you know, a few little doobie doos. And, you know, and person sitting next to him was saying that he always sung in choirs all his life. And, you know, I was. I can hear that. That voice. His voice was so rich.
And that's the thing is, especially in care homes, you don't know everyone's story. You know, when you're coming in, like, you and I, you don't know everyone's story. I mean, if we were coming in once a week or something, we would gradually get to know everyone. But on a sort of one off like this, we don't know everyone's story. But it's amazing how much you do learn. Like, I learned that this gentleman has an amazing baritone and has always sung in choirs. You know, these little pieces of personal information come out of through the process of sharing music.
It's so interesting.
Harriet Thomas:And talking of music being a great way to connect with ourselves and help tell our story, now seems like a great time to share the songs I'm adding to my playlist this week. Each week I'm choosing a couple of songs or pieces of music that are building up a playlist of music that connects me with my travels. This week I've chosen a song from the seventies. I absolutely love this song. It was a big hit for the band the New Seekers and it's "I'd like to teach the world to sing". And I know it seems a little bit corny, but through talking to people about work in dementia cafes and about the impact that singing makes on our lives, I do truly believe that if we sang every day, that the world really would be in a much more harmonious place than it is right now. The second song is a song that I used to sing a lot when I was a professional singer.
And it's "Que Sera, Sera". And what I like about this song is that I find as I'm walking, I do worry about getting lost. Or what if I run out of food? Or what if the trail is really overgrown and I have to find a new way to get round somehow, whenever these problems crop up, there's always a solution. So far, anyway, I've always got to my destination, so I like the idea of just saying, "Que Sera, Sera”, what will be will be. Kind of accept the moment and, and don't get so worried all the time. Have faith that things will work out okay. And of course it was sung by the amazing Doris day, who I absolutely love. You can find my playlist on the D Tour website at Detour UK. That's dtour dot UK. And also on music for dementia radio at the website, www dot m four dradio.com.
Harriet Thomas:So I've just. I'm just walking out of the little village of Much Wenlock, which is a really pretty little village, and I'm getting that feeling that I always get at the beginning of a walk, which is just pure excitement. And I wonder what's going to happen, I wonder what I'm going to see, how's the walk going to go? What's the path going to be like? It's just always such an exciting moment, starting a walk.
Every person's story is unique and our diverse and different cultural backgrounds can sometimes make it tricky to connect and communicate, especially when we don't share a common history. Carl Case, the operations director of Culturally Appropriate Resources, understands this challenge intimately. His journey into this work began with his mother in law's experience with dementia. Carl discovered that using vintage postcards. Yes, those postcards have cropped up again. It was a simple but powerful way to bridge a cultural gap by helping his mother in law reconnect with her past.
Carl Case:When she initially got diagnosed with dementia, we as a family were in exactly the same situation as the majority of families who knew very little about dementia. And we were on a very steep learning curve, getting guidance, advice, finding out about the next stages. But what differed between our family and the vast majority of families in the UK was that we're African, Caribbean, we're Jamaicans. And what we found was that some of the care provision and one of the day centres which you went to, one of the workers there, was absolutely excellent, absolutely excellent when it comes to person centred care, engaging with her, the two of them having a laugh together. However, what we realised was that there's a big gap, a cultural gap, because she wasn't able to trigger any of Ma's earlier memories and engage with her in those early memories. Ma's part of the Windrush generation and she came over here in her early twenties. That meant that she was born in Jamaica, had a childhood back home, had her adolescence and early adulthood back home. And Helena wasn't able to trigger any of those memories, and as a result, none of those conversations.
And also, whilst there, at times, was feeling isolated and a little bit embarrassed when she couldn't engage or when she was the only one not being able to engage in some of the group activities, fun activities, Auld Lang Syne and some of the songs from the second world war, et cetera, et cetera, which she just couldn't relate to. So I remember one day being at home, and some people would say, I totally deny this, that when I was younger, I was a bit of an anorak. The reason being is that I used to collect not just stamps, but also postcards. So I had. I've got albums of vintage postcards, many of them from the Caribbean, many from Africa, because at the time, when I was younger, we never used to see any positive images of the Caribbean in books or on the tv. And I used to have a whole heap of them from these postcards. So I remember one day taking out one of these albums and was sitting with Ma and just going through them, and all of a sudden, she was elevated back to the pedestal of storyteller. With each photograph, each image, each postcard, she was able to tell me stories relating to them, relating to where they were, and stories of her background and her early childhood were coming back up, etcetera.
And she was able to return to the pedestal at later stages of dementia, when she reached a situation where she couldn't recognize or didn't recognize some of her grandchildren. She was a woman with a story and an anecdote for most. Some would say every situation, every situation. Some of the most memorable things are just the one liners, one line Jamaican comments, like, “me nuh eat rice hot”. Yeah. Which means I don't eat rice hot. Which means that even though she might be really angry at that moment in time, yes. She's going to wait her time until she responds.
So once she says that to you as a child or to any of the grandchildren, you know full well that punishment awaits around the corner as opposed to immediate. Another one was “patient man ride donkey”. Yeah. Patient man ride donkey. Yeah. Which means if one of the grandchildren were doing something and they are getting a bit angry, frustrated that they can't get it right or they're not doing. Yes. Yes,
She'd say that. So I thought, well, if this can work for ma, this can work for other people as well. Not just the postcards, but I gathered together a lot of different artefacts which developed into the african and african caribbean dementia toolkit. It comes in a vintage old suitcase, one of the smaller size suitcases, which many from the Windrush generation came over with. And inside there, a wide variety of physical objects which are linked to their earlier days. And it's multi century as well. So you have things like the old Carbolic soap, which they used back in the Caribbean. You'll have pieces of wood, cedar wood, which has got a strong essence, a very strong individual essence, the cedar wood. And when people close their eyes and just smell the cedar wood, it reminds them of the bedroom cabinet or the headboards, because I'm. Cedarwood repels mosquitoes and moths. So this multi sensory dementia toolkit is what I developed. So there's a result of that. And along with the suitcase comes, well, two important things. An album of A3 different images. So the images from the Caribbean through that period with trigger memories. And also the most important thing, well, you can argue for family members and care workers, is the toolkit guide.
It's one thing, an elder recognizing the smell of cedar wood, but if the person who's with them, their loved one, one of their care partners who happens to be born in this country, or one of the grandchildren, they won't know what Cedar Wood is and they won't recognize some of the objects within their toolkit. So within the toolkit guide, a four ring binder with a photograph of each of the objects with a little bit of background information and also the trigger questions to be asking. So, which is fantastic for family members, fantastic for the grandchildren. All at the forefront of my mind all the time was, how could this help Helena and care workers like Helena, who might have no knowledge whatsoever of the Caribbean, but with these key little bit of background information and these trigger questions, they're available to engage in meaningful engagement with people like ma, people of the Windrush generation.
Harriet Thomas:I can't wait to meet Carl in Sheffield in a couple of weeks and visit the Sheffield memory hub.
So my walk along the Shropshire way has taken me into Acklands Coppice. I wish I knew more about trees because I can't really tell you what these are, but they're so tall. All the trees here are so tall and so thin. I can barely identify the leaves because they're so high up in the canopy. And so I'm surrounded by these very tall, pale tree trunks with ivy, dark green ivy growing up them. And then a sort of tapestry of leaves in different shades of green. It's like walking down the nave of a cathedral. It's like these trees are forming the arch like a really high arch and there are some beautiful birds singing and it's very peaceful.
I'm really enjoying reflecting on the power of personal stories and memories. Today I'm speaking with Manpreet, a program coordinator at Dementia Adventure. Manpreet's role involves integrating the latest research into their work and delivering learning and support for families and carers. Manpreet's perspective is enlightening. She highlights how connecting with people's personal histories can make a significant difference in their experience. Similar to how Carl used postcards to bridge cultural gaps, Manpreet demonstrates how understanding and valuing individual stories can create meaningful connections and enhance care.
Harriet Thomas:When mum was still alive and I would go and visit her in the care home is quite often we'd be sitting in the living room and there would be maybe, you know, seven or eight other people sitting in the living room and I would think, wow, I see these people every few days, but I don't know their stories because I can't talk to them. The care home know their stories because that's one of the things that you do when a loved one enters that care home, is you. You tell them the biography and so they know your loved one's life story. But I didn't know the life story of all these people who I was seeing, you know, every few days. And the interesting thing is, after mum died and I started going to the care home to run music sessions, that's been my way in to find out more about them, more about their personalities, more about the songs they loved. You know, there was one gentleman, we were doing a song and he was like, oh, yeah, this was the song. You know, me and my wife used to go to the dance halls every Saturday and this is one of the songs we used to dance to. And another lady used to have a farm and look after horses and a song reminded her about that.
So I started to learn more about each individual through doing music with them. And it really opened up a whole channel of communication.
Manpreet:And that's really important just finding out what people are about, what they used to love, and finding out if they can still continue to pursue those activities. Just because they have dementia doesn't mean that they might. They may not be able to do the full activity, but maybe they can do something towards it. And with reminiscence, it would bring back a sense of belonging and a sense of themselves.
Harriet Thomas:Yeah. So my mum and dad, they loved the film high society and we used to watch it every Christmas. And so Diana, my sister had created this playlist and she played this one song, I believe it's called true love. This was a song that my mom and my dad used to love. And, you know, it was kind of their song. And when Diana played this song, my mum just sort of went into this reverie. And this was when she was no longer able to speak as well. But she heard this song and you could see her kind of looking off into space, you know, and then she was doing these little kisses, you know, and we were like, oh, she's… Well, we felt. We didn't know because we couldn't ask her. But we really felt she was remembering these special times, you know, that her and dad had enjoyed this song. It was really, really beautiful. And so I think that all the time that mum was in the care home, I was always trying to find music that I thought she'd love. And, in fact, one song that we used to sing together was John Denver, take me home, country roads, because she. We lived in America for a while and that was, like, one of her favourite songs. Mum loved country music, but she loved John Denver and she loved this song. I love it, too. So I'd play it every single time we visited. And to begin with, she would sing along. So we used to sing it together. And then gradually, as she lost her language, she wasn't able to sing, but she could clap her hands or she could tap her knees or sometimes I'd just sing it with her. And so I guess for me, it's now a song that I always associate with my mum and with, like, happy times when she had dementia, you know, happy times that we shared that song together. So it's like, got a really lovely memory for me.
Manpreet:Absolutely. And the thing is, is when you have a positive experience like that, the research shows that that feeling in that moment can last hours or days afterwards. So your mum may not have been able to communicate how she was feeling, but potentially a few hours later, she was still feeling that warm feeling from that moment.
Harriet Thomas:I think that is so important to have an awareness of because I think one of the things that we may think is, well, kind of, why bother to offer a fun experience to someone with dementia, especially advanced dementia, because they're not going to remember it. But that's not the point. The point is that in the moment, if you're enjoying it, that's enough. But also, as you say, that positive vibration, there's probably chemicals, aren't they endorphins or something that that creates are still in the body? I think, as we all know anyway, that if we have a positive experience. It doesn't stop the minute, you know, we can see a funny film or something, and it doesn't stop the minute we leave the cinema. No, we've still got those good vibes going. And it's the same thing, isn't it?
Manpreet:Absolutely. And the thing is, with the brains, obviously, dementia is a complicated brain condition, but the part of the brain that's responsible for our emotions and, you know, all the things that we hold dear to us is quite often actually unaffected throughout the course of dementia and how it progresses. So those feelings of, oh, that's my favourite country song, or, this is my favourite film, those feelings are still there and they will last.
Harriet Thomas:Yeah, I think I saw a quote somewhere, and it was something like, dementia doesn't affect your heart, meaning you still have your emotions.
Manpreet:And that's because that part of the brain is probably still intact. The part of the brain which is responsible for memory and the senses may undergo atrophy, so may shrink and, you know, the cells are no longer there, but that part of the brain which is responsible for those feelings, our emotional connections to music or, you know, other things like baking, painting, whatever you find dear to you, those feelings are still there.
Harriet Thomas:It's fascinating how emotions can remain strong even when memories fade. Those feelings tied to a favourite country song or a cherished film, those still linger, deeply rooted in our hearts. Sharing stories has always been a way for us to connect, to understand and to support one another. From ancient cave paintings to modern podcasts, storytelling is a powerful tool we all use to share our experiences. In this spirit, I'm excited to introduce Marianne Sciucco, one of the founders of Alz authors, a global community of authors writing about Alzheimer's and dementia. Their work highlights the importance of storytelling in navigating these challenging journeys.
Marianne Sciucco:We started back in 2015. There were three of us, and our goal at the time was to help to promote each other's works. Two of the authors had written memoirs about caring for both parents with dementia at the same time. And I had written a novel called Blue Hydrangeas, an Alzheimer's love story. And at the time. Time, now we're talking nine years ago, it was really hard marketing a book on the subject of Alzheimer's and dementia. There is a lot of stigma attached to the diagnosis, and finding the audience is a very small niche audience of people who were looking for that type of thing. So we just thought if we banded together, we could help each other.
And so what we discovered over time in that first year is that we became very good friends and we liked each other a lot and decided to open up what we were doing to a broader group of authors. And we started that first year just doing a four week campaign. We wanted to get five books a week for the month of June, which is Alzheimer's and Brain Awareness Month. We were looking for 20 books, and we would feature a new book each day on our blog. We started a blog, and at the end of the month, we had more books. We ran out of time, so we just decided, let's keep this going. We'll try to do a book a week, and we'll see what happens. Well, we're here now.
It's, you know, eight years later, and we've got almost 400 books in the collections. Many people, and many people in our organisation will tell you that when they were in the throes of their dementia journey, they were very secretive about it. They were ashamed and embarrassed. A lot of people don't want anyone to know that this is going on. Anything that has to deal with the brain or the mind and mental illness carries a lot of stigma. So people suffer in silence, and they don't realise that so many other people in their community, in their people they interact with, may also be experiencing the same type of thing. So when you open up about it and casually might mention to someone, I'm caring for my mom, that person might say, oh, I'm caring for my mom. She has dementia, what's wrong with your mom? And now you have a friend. Caregivers recognize each other. As soon as you know that you have this connection, you know each other well. You're now like. You're like instant friends because you can understand what that person is experiencing in a way that nobody else can. So the louder we get, the more people have to listen to us.
Harriet Thomas:And while you might not want to be a published author, you might still want to share your experience with others. Or if you find yourself caring for someone, you might have to give multiple updates, which can be really challenging to manage.
Marianne Sciucco:The simplest thing to do is to keep a journal, and you don't have to share it or publish it with anyone, but to keep it for yourself, especially if you're, like, there on a daily basis, a witness. If you're bearing witness to the situation in its entirety, then you will have something that you can share with other family members so that they know what happened to that person, you know, whoever it was. Many times, if you're caring for someone, especially if you have a large family, you're going to be getting a lot of people asking you questions about what's going on, and you find yourself spending a lot of time on the phone repeating the same information over and over again to different people is you could keep like a private blog or a private Facebook page or have a slack channel or someplace where you would go every day and just post like the latest update so other people can follow along and follow the story. And then you're not exhausting yourself having to repeat the same thing all the time. You don't have to publish that, and you don't have to make it public so other people can read it, but you can have it, you know, same thing, like text messages, like a text chain or a Facebook chain or something like that. So a lot of people would do that just to try to keep everyone involved. And you could also do, like, audio stuff and just record and try to even record, you know, memories and voices with that person to try to keep them alive that way. And that can be really helpful. A lot of people like to do that.
Harriet Thomas:So that's me for this week. It's clear that whether through music, memories, or storytelling, the emotional connections we hold dear continue to resonate, even when other parts of the mind may struggle. Stories in all their forms help us bridge gaps, understand one another, and find comfort in shared experiences. I'm so grateful for the incredible people I've met along this journey and for the stories they've shared. They remind us that even in the face of challenges like dementia, the essence of who we are, the emotions, the connections, remains. Now I'm going to pause the walking and head over to Lichfield Cathedral to meet the one and only, the legend, Tony Christie. I might even brush my hair as the TV broadcasters are on their way.
Harriet Thomas:You can support me and Dementia Adventure by donating five pounds by texting DA five to 70711. So just text DA five to 70711 and donate five pounds. The D Tour podcast is proudly sponsored by Macs Adventure. Macs Adventure specialise in self guided walking and cycling holidays for independent, active people who don't want to be part of the crowd or restricted by set dates and schedules. They encourage you to go at your own pace whilst they support you with all of the routes and logistics for a worry free adventure.
