Shownotes
During one of her final weeks walking from Land’s End to John O’Groats, Harriet delves into the challenges faced by individuals living with dementia who live in rural areas, highlighting how isolation can impact mental and physical health.
Harriet spends a day with Dementia Adventure founders Neil Mapes and Lucy Harding who share why they set up the charity as well as the positive impact of maintaining relationships and creating supportive networks.
We also hear from Dementia Carers Count, a charity supporting dementia carers about the work they do.
They offer a carer support line which is free and available Monday – Friday, 9am to 5pm.
Carer Support Line: 0800 652 1102
If you like what we are doing and want to support the Dementia Adventure Support Fund please donate
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.
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.
You can listen to Harriet's playlist on Spotify. Each week she's adding songs to match her mood on her epic walk!
Transcripts
So it's my day off in Inverness and I've basically been sitting in Cafe Nero. As I was coming out. There's a beautiful busker there playing a violin.
I just asked him to play a song for me and he played the Skye Boat song, which of course is a very, very popular song.
What really struck me was that having walked along the Lochs, Loch Lomond, Loch Oich, Loch Ness, and I know the Skye Boat song is about Skye, but I don't know, it really, that music really, really resonated with me and kind of really seemed to hold the spirit of the lochs for me. So that was.
It's like I re-experienced that song that I know so well. So it's really my favourite moment of the entire day was 45 seconds, listening to this lovely man playing the Skye Boat song on his violin.
Welcome to the Detour, a special podcast series where I share my incredible journey, walking 900 miles from Land's End to John O'Groats to raise funds for Dementia Adventure.
to: to:Macs Adventure specialises 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.
So it's day 74 of the D Tour and I'm just leaving Invermoriston and walking to Drumnadrochit, which is where I spent a gorgeous holiday about 20 years ago with my two children. So I'm really looking forward to arriving there tonight. And yes, I'm walking uphill, which is why I sound a bit out of breath.
Yesterday I had the most incredible walk from Laggan to Invermoriston. A long walk, 19 miles, but so stunning, through the most pristine woodland along the canal, the Caledonian Canal, and then up taking the high route to give the most fantastic, spectacular views of Loch Ness. And can you hear the water already?
I've been going about a minute and already we've come across the first mountain stream or burn that literally pour off these hillsides every 70 to 100 meters, I reckon. I mean, you just. You're never away from that sound for very long.
I remember when I first saw Loch Ness, when I was here with the kids and we were staying in a b and b in Drumnadrochit.
And the B&B owner showed us a little route down to the loch, sort of through what was then some very wet, marshy woodland, because I think they'd had some heavy rain and the kids scampered ahead of me. And when we actually, well, when, when I reached the loch, they were just sitting there on a log looking at this incredible expanse of water.
And as soon as I reached them, I was struck by. I don't know, by the incredible magnetism of the place. That's the only word I can use. It's like a magnet, Loch Ness.
And I felt it, you know, in my stomach. I was literally struck dumb, which for anyone who knows me knows that's very rare.
So I remember from that visit how wonderful and special Loch Ness is. And that impression has just been deepened by yesterday's walk. I seriously was moved to tears looking at this expanse of water from way up high. It's.
There's something about it, and I've. In my journal, I've been trying to put in words what it is and I haven't managed it. It's a beautiful colour, for a start, it's this sort of gunmetal grey. It's kind of thick with a slight sheen. And obviously it's incredibly deep. And I think maybe it's the depth of the water.
It kind of expresses itself somehow, so that when you look at it, you're looking at this. It's such a huge feature. It's so deep, unmovable. The Great Glen itself, which runs along a fault line, is magnificent.
And the steep, steep, steep hillsides that run into Loch Ness, with their beautiful wooded areas on the lower slopes, which I'm walking through one of these now at the beech, bracken and a little conifer or silver birch, especially in autumn. So beautiful. And then on the higher slopes, where I'll be going today, because again, I'm taking the high route to Drumnadrochit.
So I'm hoping that that route will take me above the tree line, as it did yesterday, so that I can then look down from the beauty of the moorland, top of the hill, down past the forest to this incredible long, slender. It's almost like a being, like a, like a huge serpent that is Loch Ness. Maybe that's where the myth of the serpent comes from.
When you see it from above, the whole lake looks like a serpent somehow. So beautiful.
Some of the places I'm walking through are quite remote, especially as I've travelled further north. It's definitely made me reflect on the feeling of being alone and the difference between choosing solitude and experiencing isolation.
One of the places that really stands out is the Black Isle, a beautiful peninsula north of Inverness. And it's where Nancy McAdam lives. Yes, that is the same Nancy from Nancy and Agnes fame. Nancy has been living with dementia for over 20 years.
And next week, we'll dive deeper into Nancy's story. But for now, I wanted to share a snippet of conversation between her and her daughter Fiona.
They were chatting about what it feels like to live in such a remote location and how they manage the challenges of accessing care whilst maintaining independence. Let's listen in.
Fiona:I think you talked about the difficulty of accessing care in the Highlands.
That's quite difficult with people who are living rural, to be allowed to live an independent life, because there isn't really the same access to care. So, like, for if you lived here, we could have somebody coming in to see you three times a day or whatever, you would get a package.
Whereas in the Highlands, I don't have that.
Nancy McAdam:I've also got someone comes and helps me do the garden because I've got a huge 1.7. hectares of land is what I own on the Black Isle.
I mean, it's quite a chunk of land, really, isn't it? You could build several houses on it if you wanted to.
At the moment, my granddaughter Amanda comes visiting with her partner and the children have been having a great time, I think.
Fiona:And you'd like to be able to carry on living up at Ardivalle for as long as you possibly can?
Nancy McAdam:Of course I would.
Fiona:And it's just how feasible that is, with such a lack of resources and services in that area, I suppose.
Nancy McAdam:But on the Black Isle, we have a community transport scheme where I just use the phone and phone someone and say, I would like a car and such and such a date, and they organize that for me.
Fiona:Yeah. But they don't have an alarm system.
So, like, my father lives, Nancy lives in the back here, but my father lives, and he's right close to us and he has an alarm that he wears around his neck if need. So if anything happened, if he had a fall or anything, he would press that. And he has carers coming in three day times a day.
Nancy McAdam:Okay.
Fiona:That you wouldn't have access to that where you are.
Nancy McAdam:I don't need that.
Fiona:No, you don't need that yet.
Nancy McAdam:I think if my dementia were to get worse, I would have to think about that, but at the moment I would say I don't need it. It depends what Fiona thinks. Do you think?
Fiona:No, but we're talking about the future.
If you're thinking about the future and having things in place for the future, then what I'm saying is, if you live in a rural area in the Highlands, for anybody, not just you, that service is not available. They don't have a bank of carers that care for people or an alarm system. They don't have that.
Nancy McAdam:No, but we. You've helped organise with. What's her name? Jackie.
Fiona:That's just somebody that I have coming in once a week. Yeah, but, yeah, that seems to be a concern for us. That's good that you're not concerned.
Harriet Thomas:As I mentioned earlier, we'll hear more from the wonderful Nancy next week, but I wanted to share her thoughts on whether the right support is there when you live in such a remote part of the Highlands.
This week, I've also had the incredible privilege of staying with Neil Mapes and Lucy Harding, the founders of Dementia Adventure, in their family home.
Honestly, it felt like a pilgrimage of sorts, almost like walking the Camino again, but this time towards the very heart of what inspired Dementia Adventure. We had a great time chatting in their kitchen. Neil shared how their personal experiences shaped the charity.
And believe it or not, Lucy even dyed my hair.
What's clear from our conversation is that they both believe so strongly in providing the right support so that people with dementia can stay connected to the people and things that make them who they are. They also emphasised that living in a rural area doesn't have to mean isolation, especially when there's a strong sense of community around you.
Here's some of my conversation with Neil and Lucy as we talk about the importance of maintaining independence and staying socially connected, no matter where you are.
Neil Mapes:It was the combination of both of our experiences. So I'd had three grandparents with dementia from a young age. Started when I was a young boy with my nan and then my granddad and then my other nan.
And then I studied psychology and became interested in older people's mental health, and then the vast majority of that caseload is folks with dementia.
It certainly was at the time, and so I ended up working in a dementia charity and then was just struck by the lack of choice that was on offer for people, you know, and how negative everything was. And there was just no meaningful alternative to day care, residential care, you know, just retreating from society, really.
And at the same time, Lucy had introduced me to adventure holiday and I'd met her through adventure holidays. The more time I spent with people, the more obvious it was that they were just spending too much time indoors.
They were in their own homes more often than not, and they were sitting in the living room deteriorating. Or if they did go out, they went in a minibus or a car to a day centre and sat with other people in another building.
And then if that continued, they ended up in care in another building and they just seemed like, removed from society completely. And I think what we saw is that folks were unnecessary, necessarily deteriorating because of those things.
You've got to be active and socialize and do all those things to maintain that level.
I think when dementia comes, so that's what we put our heads together and said, well, surely it's possible to provide holidays for people with dementia, and holidays are possible. And so Lucy, being a holidays and logistics and operations wizard, went about designing them and off we went.
to start. We started in April: Lucy Harding:Right, that's a joke that we conceived. Dementia adventure at the same time, as we can see this one.
Neil Mapes: We didn't. It took two years.:We started doing park walks to talk to people with dementia about getting them outdoors more often and what they wanted, what they wanted from a walk locally and whether they would consider going on a holiday and what stopped them going on a holiday and what helped.
So we did a whole series of early consultation events that were funded by Unlimited at the time, which is an organisation in London supporting social enterprises and new ideas. And once they had supported us, a number of other folks supported us, and then we started doing the holidays and then they, they were just game changers for people and they were really tiring and really challenging logistically to organise and didn't add up financially, but they were brilliant.
You know, you saw people come back to life again and the relationships flourished and they had, you know, just an amazing time in a supportive group doing fun stuff.
Actually, when you were out, you weren't a group of people with dementia, you were just a group of people enjoying a walk or whatever, or a sailing trip. One of the other problems that we identified is that as dementia increases, so do the number of people that are paid to be with you.
Harriet Thomas:Right.
Neil Mapes:And the number of people that are choosing to be with you decreases to zero quite quickly. And people step across the road and stop coming. And I.
And then all of a sudden you've got a care worker coming, you've got an occupational therapist coming, you've got an advocacy worker coming like me. You know, you'll have all these people paid to come.
And there's something fundamentally equalizing, I guess, about you being around people that are choosing to be there. The other couples are choosing to be there, but so are the volunteers choosing to be there. And they could be somewhere else, but they're not.
They're with you on a holiday in the Lake District or wherever it might be. And I think that says something of value to the people with dementia that quite often are at risk of losing their own personal value and identity, that these folks have chosen to be with me this week and it has a really deep connection for them. But also the volunteers get a huge amount from it. I continue to volunteer on the Dementia Adventure holidays.
Harriet Thomas:This is the other thing about, you know, going back to what we were talking about, sort of moving, you know, to somewhere isolated in inverted commas, you know, there are so many opportunities, aren't there?
You know, they've got opportunities to do, you know, all this sort of stuff outside, but you still got your ceilidhs, you've got your choir, you've got your sports, you got your lace making. It's like you've got everything.
Neil Mapes:It's really interesting because there's a bit of a pushback on this, on this phrase, rural and remote. You know, I don't think people have an issue with the word rural, but they do have an issue with the word remote.
And I increasingly understand that, you know, it's like remote in what context? You know, so I think that's the problem with dementia as well. You're comparing it against a different context.
Harriet Thomas:Yes.
Neil Mapes:And so it's only remote because you're defining it by the presence of a city.
Harriet Thomas:Right.
Neil Mapes:You're defining health by the absence of illness. You know, and it's, it's that sort of polarization that I think winds people up. And it, you sort of.
It reinforces the fact that you just don't understand the lifestyle in rural areas. And we're learning, I mean, I don't know everything, obviously, but I think dementia is quite similar.
You know, people think about memory, but they don't think about the nuances on the broad spectrum of different types of memory.
You know, they think, oh, because you've forgotten something, you know, you can't remember somebody's name or a place that you worked or some other factual detail about your life that you've got less value all of a sudden, in the same way that a remote area has less value, because it's a supposedly remote, but it's not remote to the people that live there, it's just where they live. You know, dementia is a label that brings a lot of negative things, but there is, there are good reasons for going and getting that label.
A lot of people are put off by the stigma around dementia still and delay getting treatment, delay getting access to benefits, and delay and invite problems further on by not going soon enough. So there are advantages to getting a diagnosis of dementia.
Harriet Thomas:I've never thought of that because, obviously, because my mum had dementia and my granny had dementia, I've always thought, oh, no, I just. I'd rather not know, you know, but obviously because I, because I've got sort of, you know, I must have this, it's all gonna, that's gonna be the end of everything type thing, you know, but obviously what you're saying. I like what you're saying. Cause it's like, you know, you can have some agency. Yeah.
Lucy Harding:If you get to sort of choose what. Yeah.
Neil Mapes:So out of all the people I've seen end up in seriously distressing and isolating situations, they're often the people that didn't plan ahead.
It wasn't their fault, but they're often the folks that didn't anticipate a crisis, didn't plan and get early treatment or early intervention, get support structures in place that might bolster them when bad things happen.
They tended to lurch from one crisis to another, and then one crisis too many falls in succession, you'll have two or three things and all of a sudden you're in hospital, then you're in a care home, your husband's dead, and you're in a situation that you never envisaged yourself being in. And that is a fairly common trajectory. And so if you want to avoid ending up in a painful lifestyle, help yourself to avoid - you can never guarantee anything, but then obviously getting a diagnosis as early as possible, getting treatment if it's available, getting support structures. We used to talk about a circle of support. You want your neighbour, you want your friends, your family, a holiday provider like Dementia Adventure.
You want a circle of support around you that's going to keep you as well and socially connected and physically connected for as long as possible.
Lucy Harding:Behaving a bit funny, they can come over and say, are you okay? Can I get you home? Can I get you a cup of tea. Yeah.
Neil Mapes:Because you're more likely, you know, and we know folks up in Scotland that have had dementia for a very long time now, you know, 20/30 years now, you know, and they're, they're very good at staying connected to the people and the places that they love. And I'm, and I'm sure that is part and parcel of what is going to keep you healthier for longer and increases your chances of staying socially connected and not becoming isolated, because you've got to keep your connections with people. You've got to make new connections, make new friends, go to groups, go to activities that you enjoy.
And I think it's not the secret sauce, but it certainly helps.
Harriet Thomas:Yeah, I love that expression, the secret sauce. The idea of a circle of support is also so powerful. We all need that throughout our lives, don't we?
Our needs might change over time, but that sense of connection and support is what makes us feel whole. Without it, it's easy to feel like we're disappearing, like we're becoming isolated or disconnected.
And for many, that can lead to depression or even a decline in health. Do you remember Peter Berry, the fabulous cycling enthusiast from episode three?
He built such a meaningful relationship with Deb Bunt, another keen cyclist. They found a way to support each other through their shared love of cycling, which became their own circle of support.
That connection gave Peter a renewed sense of purpose and joy despite his dementia diagnosis.
It's a reminder that maintaining those connections, finding our own secret sauce and nurturing our circles of support are vital for all of us, whether we're living with dementia or not.
Peter Berry:I think for me personally, after the diagnosis and going through a year of depression, it was as though nothing would ever be any good again.
And I think that having the challenges and cycling like I did and trying to find a purpose in my life, but I never really, I suppose, hunted down a friend like Debs. It just somehow happened and it's.
It, I still can't really believe that from them early, darker days after the diagnosis to where we are now, I can't. I would never, ever been able to imagine that a) I would have met somebody like Debs.
We would have had a book out, that life would have been as good as it is now for me, my wife, Debs, and the people around us.
Harriet Thomas:Deb, cycling and his family have all been key ingredients in Peter's secret sauce.
They've given him a renewed sense of purpose, helped him live life to the fullest despite his dementia diagnosis, it's such a great example of how finding those things, whether it's a passion, a supportive friend or the love of family, can keep us going and thriving, even in the face of a big challenge like dementia. Peter shows us that with the right ingredients, you can continue to live a rich and fulfilling life.
So I'm about 9 km away from Inverness. It's October 14. I'm in a t-shirt. The sky is blue with beautiful white, interesting clouds. They look kind of like dolphins or something.
They're sort of smooth, grey and kind of long, ovally shapes. I'm now walking in the most magical woodland. The air is so pure, must be so pure here, because it's just a pleasure just to walk and feel this cool air on my face and to smell the dampness. I mean, goodness, I wish you could see the cushions of moss. And when you walk on it, this moss, it literally is like a cushion.
It sinks down like a soft mattress. It's just covering both sides of the path in this sort of thick matting of citric green and dark green. And interesting shapes.
Really can't tire of being in this. This landscape. It's absolutely stunning, especially on this beautiful day.
Because being in a wood when the sun is out is another kind of joy, because you get those very special effects with light and shadow as the sun sort of shines through the branches, giving it even more sort of underwater feel. And the birch trees, the yellow of their leaf is just glowing in, in the light. I mean, it really is like they're giving off light.
You feel like it was dark, they would sort of give off light. They're so bright. So, yeah, as you can tell, I'm absolutely in heaven here. This is really spectacular.
I keep going back to this circle of support, how crucial it is to stay connected to the things that matter. It got me thinking about how everybody's secret sauce is different. For Peter Berry, as we heard, cycling and family were his key ingredients.
For me, nature and the outdoors have always been so important. The sights, smells and textures of the environment ground me, and I think it's what keeps me going through the tough parts of this walk.
Those sensory experiences really are a huge part of my own secret sauce. But what happens when that sense of connection breaks down, or worse, when you feel isolated?
That's when things can get really difficult, particularly for those living with dementia. And that brings me to another one of this week's fabulous guests, Lovemore Munowenyu. Lovemore is a mental health specialist for a community mental health team in Surrey.
And he's seen first hand how isolation can negatively impact not just mental health, but also physical health, especially for people living with dementia. He explains that isolation isn't just about being physically alone, it's about feeling excluded from society.
And that can be even more challenging depending on where you live or your cultural background.
Here's Lovemore, sharing his insights on why staying connected is so important and how we can help prevent isolation from becoming a barrier to good health.
Lovemore Munowenyu:The way you keep your mind active sometimes is around engaging with others is around exploring. And our minds were never meant to be dormant, as in to just lie still.
They were always meant to explore, to be inquisitive, and to try to work out what's happening. And one of the ways you can do that is, is engaging with other people is having contact outside of your own experiences.
So yes, I think there can be a connection, but I'm not sure whether there's been any evidence, any studies to prove that. But I would say anecdotally, there is, the more you're withdrawn from society, from groups. I think your function can decline to some degree.
I think human beings, we were made to make connections. We need to make connections. We need to make connections outside of ourselves. We need to make connections outside of our families.
That's how we become better in ourselves. So I think making connections is very, very important and maintaining those connections.
So sometimes it's easy to make a connection with someone and then it dies down. It's about making connection and maintaining a connection with the outside world, with outside environment or outside yourself.
The trick for us, as a service or as a community is to try to adjust ourselves to a point whereby we are very inclusive, not necessarily in the physical sense, as in trying to make sure that we wheelchair access and things like that. But we culturally inclusive to what? Other cultures? We have a very diverse population here, and that is well known.
But then you have pockets in a county, you would have a pocket of a community, for example, near us here we have a Gurkha community. And one of the. So that's not in my actual punch, but it's just next door to us.
And I knew that there were difficulties around the Gurkha community accessing the mainstream mental health services. Therefore, that community, even though they were all a group of people, okay, that community was isolated, was isolated from main services.
Just because maybe they felt we didn't understand their culture or they felt, no, no, no, we can't go to outside. It won't be good for us to expose ourselves. We need to keep this in house. And there are many communities who do that.
So in terms of the BAME community towards dementia, I think there are different, different views on how people view dementia or how people view mental health, especially. There's a feeling that, oh, no, you know, it's punishment, it's God's will.
If there's a very high religious element to it or a cultural, a spiritual element to it that could be seen there. But there's also an issue about, oh, it's mental health. It's embarrassing.
You know, we are making our family name, you know, exposing it out there that, oh, someone, one of us has a mental health issue or one of us is dementia. Therefore, the best way to do to protect that is to keep it in house.
So that may be one of the way the communities would view, but if it's a broken leg, they will be very much out there in A&E, but if it is mental health, it's like, oh, no, no, no, we can't go out. There's an issue about embarrassment.
You know, we don't want people to know that that is what's happening to us or that's how we have, that's what we have in our community. So, yeah, it's really about how do we go through that barrier?
How do we break down that barrier and talk to those communities around, actually, this is okay.
It is okay to have someone in your family who has dementia or who has a mental health issue that needs addressing and there is help for it, there is support for it. You are not on your own. That should really be our message then, that you are not by yourself.
We can help you, but I think we need to also be able to understand that culture. As I was saying, our services need to have an aspect of including those cultures into us.
So we need to learn, so we need them to teach us because we don't know, I suppose. But if we engage with them, we learn from them and then we can teach them what we know from our end.
And hopefully you're hoping here really, that you then meet in the middle and there will be some form of engagement and some leading to then not that group being isolated. So we wear these dementia friendly or dementia friends badges on us.
We think people with dementia or people with mental health or people in this age, we think they only come to us, but they also go shopping, they also go to have their MOT down at the garage, they go on holiday, they do all other things that we do, and we seem to forget that. So why are we just making a social and NHS and a voluntary service dementia friendly. We need everyone to be dementia friendly.
So we need our local garage to be aware that, you know, there's this thing called dementia and how they can help some, you know, one or two of their customers and how they can engage them. We need to make our town centres dementia friendly. We need to make our supermarkets dementia friendly.
We shouldn't just be making it a particular place and then leave the rest the way it is. You know, it has to be, it has to be everything. Everything has to be dementia friendly.
They need to make it an I, a community, a neighbourhood, dementia friendly.
You need to make the next door neighbour look out for their neighbour who may have dementia and be mindful that if they are leaving the house at 2a.m. maybe go out and try to find out if they are okay. I think what we need to avoid is people staying within the four walls.
If we can get people to be outside of the four walls, I think we've done a great job.
Once you get out, the world is your oyster, really, because you don't know the elements you're going to meet out there once you're out. But sometimes they can't reach you when you're in. So it's about trying to get people out. Would be a great thing for us to avoid isolation, but also for me, family members, I know people are busy.
We are all busy. But if you are a member, if you are a daughter, a son, a nephew, niece, give that uncle of yours a call.
Give that aunt of yours a call every now and again, a text. Just say, how are you? Keep in touch with family. It's very, very important. They love hearing from, from family people.
I've got an uncle and I keep in touch with him. Now that we've got WhatsApp and things, that I keep in touch with him every day. But before that, I would call him like every, every so often.
And he's always so excited, always so excited to just speak to you. And it amazes me because I'm thinking it's just a phone call. But actually it's not just a phone call. It is really important.
Sometimes that call, that visit is the only thing someone has had that week.
Harriet Thomas:Something Lovemore said really stuck with me about being aware if one of your neighbours, perhaps someone with dementia, leaves their home unexpectedly, maybe even at 2a.m. It got me thinking about how important it is for all of us to look out for each other.
He talked about the need to pay attention and be aware of what's going on around us. And that's especially crucial when someone might be confused or disoriented. But the reality is not everybody has family around them all the time.
Family can't always be there. And that's why having systems in place to keep people safe is so essential.
Jill O'Connell, who's an adventure leader on Dementia Adventure supported holidays, spent much of her career with the West Yorkshire Police. Jill and her husband Richard, were so kind to give me a bed for the night while I was passing through Yorkshire.
Jill's experience with dementia and people going temporarily missing is vast, and she has some really interesting insights into what's happening. When someone leaves a situation unannounced, it's important to remember whether someone has dementia or not.
When they go somewhere, it's usually with intention. That perspective can really help us understand how to best support them.
Jill O'Connell:During the time I was with West Yorkshire Police, I was as an inspector and a sergeant. I used to coordinate searchers for people who had gone missing, some of whom would have a diagnosis of dementia.
The thought process was, even when I was in the police then, that having dementia is just about memory loss. But it's far more than that. It's far more than that. And it's not just about a certain factual memory, it's emotional memories.
And we had to really look at why people went missing and where they might be found. And it wasn't just about the fact that, yeah, they'll just be wandering off with no purpose.
People with dementia do have a purpose, and that purpose might be to revisit places that they visited a long, long time ago. So that's what we had to do in coordinating searchers to make sure that we were searching in the right area.
Anybody can become quite disorientated in an unfamiliar environment, whether you have dementia or not.
So if you have someone who does have a diagnosis coming to a place that they've never been before, with people they've never seen or interacted with before, that can be quite unsettling for them. So then it can make their need to leave a place their desire even greater than it was before.
So sometimes if somebody has a tendency, as we call sometimes, to go on unplanned adventures, this tendency can be increased. When we have the holidays, we have clients who've been on the holidays, who've actually holidayed in those areas before, but many, many years ago.
And the emotional memory and the factual memory in the brain are two totally different parts. So someone might then have that emotional memory triggered by a place they are visiting on the holiday.
Harriet Thomas:Jill also mentioned The Herbert Protocol, a tool used by police and emergency services nationally to narrow down the search for a missing individual.
It helps identify next of kin and gather vital information quickly, which can be crucial when every minute counts completed by either the person with dementia or a carer. The protocol offers peace of mind, ensuring that in stressful situations, loved ones don't have to remember key details on the spot.
Jill O'Connell: ocol, that came about back in:George had been a resident of a care home in Norfolk and unfortunately George went missing and the police were involved and they searched for him and it didn't have a very good outcome and he had been searching for going back to a place where he knew it was looking for his childhood home in that area. And there was a lot of information that could have been passed to the police and those assisted in the searchers much earlier.
So after this event, his family worked with the police at Norfolk and the care home themselves and other care homes, looking at some sort of document to collate information about a person who might be prone to wandering or like on our holidays, the unplanned adventures, or maybe someone who hadn't previously, but might have been at risk of doing so. And what it entails is lots of information about that individual.
So that might be physical attributes, physical things such as hair colour, eye colour, height, build, scars, tattoos. And it also has things like, which is really important, medication people take.
What happens if they don't take this medication after a certain length of time? How does it affect them?
So if you've got someone who, for example, has angina, you know, and needs medication, if they're having an angina attack, and of course, stress can bring things on like that, you know, it's really important to know what medication they're taking, when they need to take it, when they last took it. It also lists places which have an emotional attachment. So it could be that they head back to that place which to them is a really important place.
So it'll list all sort of venues and places they may have gone to school, places they've worked in the past, anything really.
I always used to say to individuals, too much information is better than not enough, because if we've got all that information to hand, you know, from the minute we know that someone isn't there and we need to try and look for them, at least we know where to look in the right places. There are 52 separate police forces in the country. And as far as I know now, every police force has The Herbert Protocol in place.
So straight away, if an individual goes missing, they can ring the police and sort of say, right, I've got Herbert protocol form in place, I'm going to send it through to you. And again, it's about just encouraging people to do that.
Even if someone hasn't gone missing because they've managed to close the door before they've gone outside, or they have actually seen them heading towards the garden gate, you know, it's great to have that available for the just in case scenario. Say Harriet's out on one of her walks and she comes across someone who is on their own.
And having chatting to them is obviously quite confused, disorientated, agitated and anxious. Because obviously, if someone's lost, that can lead to that agitation.
And their feeling of being, you know, very, very anxious is to just chat to them, sit down, ask them the name, because sometimes, you know, straight away, they'll be able to say who they are. They might not remember where they're from and why they are in that place that they're in.
If there's a mobile phone signal and, you know, you're not particularly getting anywhere trying to find out who they are, where they've come from. The first thing to do, really, is to ring, ring the police and just sort of say, look, I've come across someone, this is where I am.
And then it's a matter of just letting people know where you are and just talking to someone, calmly chatting to them about the past family and trying to make them feel more comfortable with you as an individual, because you can imagine that their anxiety levels would be really high, been in an unfamiliar place to them on their own.
Harriet Thomas:So I just wanted to say that I'm walking uphill, I guess I'm probably at about 350 meters, something like that. But the air up here, I think I already mentioned yesterday, the air is so fresh, it's so pure. But today we've definitely had a fall in temperature.
And at one point, looking across from a viewpoint, you could see the mountains on the horizon were covered in snow, which they hadn't been yesterday. And it's got that lovely cold feeling against my face.
And I've realised I haven't felt that cold air on my face for a long time, probably not since I was a teenager. I think I've only been skiing three times in my life, so I want to make it sound like I'm some kind of expert, but I remember that feeling.
That's what it reminds me of that coldness. That fresh coldness on my skin is bringing back that memory of going skiing with my parents. And it's making me think I'd like to go somewhere cold.
I'm not into skiing, really, because, as I say, I've not really done it much and I don't really want to break a leg or anything. I like my legs as they are. Maybe I would like to try cross country skiing. Or maybe. I met a guy yesterday.
He was canoeing the Great Glen Way and he was saying that he was planning a trip to the Alps for five weeks and he said it'd be very high up and he'd need crampons because it would be very snowy. My first reaction was like, oh, no, no, no, not for me. That sounds too dangerous and too scary, but actually I'm thinking I'd like to try that.
So I might look for maybe, you know, walking with a group or something and, yeah, trying out some walking in snowy terrains. I think it might be interesting.
Just going back to what Lovemore was saying about how important community is, especially for people living with a dementia diagnosis, it's easy to forget that others are affected too, especially carers. Caring for someone with dementia can be incredibly isolating.
You might feel like no one around you truly understands what you're going through. And as your responsibilities grow, it's easy to find yourself missing out on social events or just that day to day connection that we all need.
The title carer can feel a bit strange. After all, we're often talking about a husband, wife, daughter or friend. But it's a title that can open doors to crucial support and services.
And that is so important because being a carer can be a very lonely experience and sometimes the right help makes all the difference. My next guest, Frances Lawrence, CEO of Dementia Carers Count, knows this first hand.
She's here to talk about the emotional and practical challenges that carers face and why it's so important that they get the support that they need.
Frances Lawrence:My mum was 62 when she was diagnosed with dementia and she sadly passed away age 67.
My mum lived on her own and, you know, for a while she was okay living independently, but then it was a battle to get carers in to support her in her home. The local authority didn't feel that she needed the level of support that we knew that she needed.
And I understand local authorities are under huge amounts of pressure, but, you know, when you're on the receiving end of that sort of experience, it's really, really challenging.
So you know, my mom was a fiercely independent woman and she turned into a really dependable person, which was the opposite, the absolute opposite of who she was.
And she became afraid, she was afraid to leave her home and actually her home became somewhere where she was very afraid of being in because so much was changing around her and so much was distorted by the dementia that, you know, her home no longer felt like a sanctuary. And I think the thing that I found really challenging was I just didn't know where to turn to for help.
So I was working full time and commuting to London full time and trying to look after my mum. And, I mean, it was too much at once.
So it's a very, very isolating experience because, yeah, quite often you do feel that there's no one in the same sort of position. You don't know where to turn to.
And then, you know, just when you think you're getting your head around something, something else changes and you're back to square one.
So Dementia Carers Count is a small national charity that supports, advocates and campaigns for dementia carers, so that no one has to feel isolated, invisible or alone.
So we offer practical and emotional support, we campaign for change and we also offer consultancy to businesses and care homes to ensure a better experience. Our report, Invisible, was released earlier this year, based on the survey that we did last year.
And basically, carers told us that they felt invisible, unheard and alone. And actually nine in ten are reaching crisis point.
And it's really, really telling, isn't it, that it takes a crisis for someone to be able to get some help. And that's the thing that we want to try and address.
We want to help more people feel equipped and less alone so that they don't reach that crisis point before reaching out for support. So we have a carer support service. There's three different bits to it.
One is one-to-one support over the phone where you can access practical and emotional support. So we offer free counselling for dementia carers. The second bit of our offer is online support groups, so you can connect and meet with other carers.
And then the third offer is online information. There's a wealth of information on our website, which you can access in your own time, take time to digest it.
There's lots of on demand information on there as well that helps you understand more about dementia and more about the caring role.
Harriet Thomas:Dementia Carers Count really does provide an invaluable service. Their carer support line is an amazing initiative, offering counselling and support.
If you're caring for someone with dementia or know someone who is, and you or they are feeling alone, overwhelmed or worried about money, make sure to give them a call. Their friendly team offers free counselling, benefits, advice and practical support.
ou can reach them for free on:This episode has been so jam packed I nearly forgot to add my playlist choices for the week. Each week I pick some music that connects me with my journey and this week I've chosen You've Got The Love.
version that was released in:So I find when I'm walking along the path, often I am walking by myself. But I often think about people I've met on my journey.
The people who are at home, my friends and family, the people who are no longer with me, my mum and my dad. And I really feel that love is surrounding me as I walk. The second song that I've chosen for my playlist today goes back even further.
his song, we're going back to:And I absolutely love this song and it reminds me of the incredible people that I have met on my journey. People who are running dementia choirs, dementia hubs, dementia cafes. And they are really living in everything they're doing.
They're living this idea of reaching out, touching somebody's hand, making a circle, making a community, making people feel part of something, feel heard.
And so this song really reminds me of the inspiring people that I've met who have really touched my heart as I've walked along the path from Land's End to John O'Groats.
You can find my playlist on the Detour website, Detour dot UK. That's Dtour dot UK and also on Music for Dementia Radio at www dot M4R radio.com.
I love the underwater feel of walking in these forests. Caledonian pine. It's cool, cooler than it is outside. It's dark, it's damp.
There's a sort of whole world of mosses and lichens that are like corals and reefs and seaweeds. And it's very hushed, muffled, like it is when you're underwater. It's very peaceful. It feels like you're in another world.
And the wind occasionally kind of gets through a gap in the trees and makes the foliage slightly sway, exactly like seaweed does under the sea when there's a little ripple or a fish goes by and you see the, the, either that long coral or the seaweed just kind of ripple in the, in the ocean. It's just very like that here.
It's got the same peace where you feel like you're kind of away from the world of humans and even away from just the outside world. It feels very timeless, very still, like you're in a no time zone somehow. I'm really gonna miss these woods when I get onto the John O'Groats Trail.
And that's it for this week. What an episode. Can you believe it? Next week I'll be on the final stretch, the John O'Groats Trail.
This incredible challenge is nearly over and we'll be diving into the theme of challenge in all its forms. In the next episode, we'll hear more from the wonderful Nancy.
to: to: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.
