This special bonus episode of the D Tour reflects on some of the themes raised over the past three months of Harriet's walk from Lands End to John O'Groats.

We look at the complexities of dementia, as well as how highlighting the importance of wellbeing and the support systems available.

This episode is sponsored by MedicAlert UK

Harriet is still fundraising, so if you'd like to support her, you can text DA5 to 70711 to donate five pounds or visit her page at Dtour.uk

If today's episode has inspired you, we'd love you to connect with us at Dementia Adventure. Visit dementiaadventure.org to learn more about our work, find information on our carer support sessions and explore the supported breaks we offer.

There are many ways to get involved, and we'd love to be part of your journey.

Hello and welcome to this special bonus episode of the D Tour. I'm Sue Hinds, head of Innovation, Research and Development here at Dementia Adventure.

Over the past three months, we've all followed Harriet on her incredible journey from Land's End to John O'Groats. I had the pleasure of walking with her on her 61st birthday, a day that saw us covering nearly 30 kilometres.

It's astonishing to think Harriet kept up that kind of distance daily. Her resilience and her commitment to raising awareness for Dementia Adventure has been truly inspiring.

Harriet's walk has sparked so many important conversations around resilience, support and the power of the community. And it's highlighted the practical resources that can make a real difference in people's lives.

Thanks to the generous sponsorship from MedicAlert, we're able to bring you this bonus episode where we will explore some of the themes that came up time and again on Harriet's journey.

In this episode, we'll go a little bit deeper into understanding dementia, the importance of wellbeing and the support systems available, whether through trusted services like MedicAlert or community initiatives closer to home. We hope these reflections provide meaningful insights and guidance to everyone.

Following along the D Tour has been a wonderful opportunity for Dementia Adventure to share our work and it's also given us a chance to reflect on why we do what we do. Harriet's Journey has beautifully highlighted the power of connection, nature and resilience for people living with dementia and their families.

Our CEO Fiona Petit captures the impact this journey has had on all of us and how it's inspired a renewed commitment to creating more accessible opportunities. Here's Fiona's reflection.

I mean, the D Tour has inspired us in so many ways.

One of the things that it's reminded us and reminded everyone else, I hope, is that, yes, we live in a challenging world and we have our personal challenges too, in our. Perhaps in family situations, you know, as well as the sort of wider world challenges.

But we live in a very beautiful world as well and life is for living and that is so important for people living with dementia and indeed the people that are living with them.

And so, you know, I hope that the podcast has inspired others and reminded others how important it is to get out there, go out and enjoy something of the world, you know, even if it's just a short time each day and getting out into nature and enjoying it with others as well. You know, we've talked about the social interaction before and how important that is, you know, because things like that, it can.

It can do wonders for the brain. And that's really key for people with dementia, but for all of us.

But it's, you know, what it does for the whole being, isn't it, you know, mind, body, soul, spirit that is so important.

So I hope through this D Tour and all that Harriet has been able to highlight through the conversations that she's had with people, people along the way, but also those sort of amazing special guests that we've talked to and she's talked to. I hope that this is really going to encourage the need for accessibility.

This is about joining in, not being excluded in any way and doing what everyone else is doing and enjoying what everyone else is enjoying. So, you know, we can help through that.

You know, it's been a wonderful reminder for, again, those listening that just how important it is to just have days out or a few hours out or even a few minutes, do something special and be able to enjoy the fresh air in some way and come back to something that perhaps they used to do or used to really love.

Thank you, Fiona, for sharing those reflections on the impact the Detour has had not only on our audience, but on all of us at Dementia Adventure. It's been a powerful reminder of why we do what we do and the importance of accessibility and connection for people living with dementia.

To build on this, let's hear from Ruth Thompson and Manpreet Gill, two of our programme managers who deliver regular learning and support sessions for carers.

They're here to delve deeper into understanding dementia from the way it impacts the brain to the practical support that can uplift both carers and individuals alike.

Manpreet, should we start by just having a quick conversation about what is dementia?

Because it's often a question that comes up, isn't it, on a lot of the care recession that we run, on the day to day work that we do, people don't always understand what that term dementia is.

So, you know, we know, don't we, that it's basically an umbrella term for any illness or disease that affects the way the brain processes things and is progressive.

So we know there's around 200 different forms of dementia and there's loads and loads of information out there around those different forms from various different platform out there. I'd really like to talk to you about how dementia impacts the brain, if that's okay.

Absolutely.

Because dementia is a very complex condition of the brain and it is different to normal aging of the brain, the two quite vastly different things. With dementia, there are changes within the brain and these affect different parts of the brain.

And it depends on what type of dementia a person may have as to which part of their brain may be affected. This isn't true for all dementias, but there are two parts of the brain rather, which may be affected by dementia. So the first is the hippocampus.

The hippocampus is responsible for short term memory. So things like names, dates and places. When we think of dementia, we think of memory.

And so with the hippocampus, this is often, but it's not always the first part of the brain to be affected by dementia. So for a person, this may mean that memory and factual recall becomes increasingly difficult.

But there is another part of the brain which can be affected, and this is the amygdala. So this is actually the Latin word for almond.

This is a tiny kind of almond shaped structure and it's embedded deep within our brain and it has a really big job. It's responsible for our emotional connections to events, so how things make us feel. It's a little bit different to the amygdala in that it's often.

But again, it's not, it's not always, it's actually unaffected throughout the course of dementia.

So it often becomes the case that a person's memory may be affected, but the way that they experience things and the way that things make them feel may not be affected.

So can I just jump in there?

Would it be fair to say that, you know, when we're talking about memory, it's really that sort of short term, factual memory, you know, names, dates, places, what we've done recently and what really becomes important for somebody is that feeling. So I guess to put that in some sort of context, it's, you know, somebody living with dementia can't change how their brain works.

So when we're saying, for example, on a phone call, oh, do you remember I called you yesterday? Don't you remember what I said? Actually, that memory just isn't embedded into the brain.

The brain is not processing that, so it's almost like it's never happened.

Whereas actually, if we get to the end of that phone call, you know, and we've had a really nice conversation about something that will stay with that person, you know, when they put that phone down or they come away from that conversation, those feelings of enjoyment actually will stay with somebody rather than what that conversation might have been about.

Lots of people describe it as having a whiteboard full of information. So all the things that you've done in your day are written really lovely, nicely on this whiteboard. And at the end of the day, it's all wiped off.

So those memories are perhaps, not always, but perhaps are just not there at the end of the day.

But those feelings from those memories and events may actually still be there, because research actually suggests that feelings from an event can last hours or even days afterwards.

So if you have, you know, a nice phone call, something that resonates with you, something that stays with you, a nice outing, those, you know, happy feelings, the hormones that are released, may stay with someone for a significant period of time afterwards.

Yeah. That's amazing.

I mean, actually, when you think about it, it must be really, really challenging for somebody living with dementia because, you know, the people that I've supported across my time, often those levels of frustration of not being able to recall what I've done, not be able to recall past conversations or names, has really led to these increased frustration.

And I know when you're experiencing that or you're able to recognize that things are becoming more challenging, generally, that can have a huge impact on somebody's mood and motivation, can't it? And their, you know, desire to then engage in social activities or different tasks around the house can really be prohibited. Would you agree?

Absolutely. Somebody living with dementia is 40% more likely to also have depression at some point within their journey.

But there are lots of things that we can try to do to alleviate mood and perhaps even lift those symptoms.

And here at Dementia Adventure, we really advocate for the benefits of nature because we know that going outside can really alleviate those symptoms, not just for the person diagnosed, but also for their carer, who, you know, quite often struggles to go outside. And the reason why we advocate for all of these benefits, and there are so many, is because we know it helps to improve mood.

There's research out there to suggest that symptoms of depression, anxiety, agitation are reduced, as well as all the benefits that we can receive. So improved communication, improved sleeping and eating patterns, those sorts of things.

And I think that really comes from, I know when I started to look into this, it was absolutely fascinating what happens in the brain when we step outdoors.

There's some real chemical changes that happen. Things like our serotonin levels increase, our dopamine levels increase, those happy hormones, we get a real surge of those the minute we start to go outside. But also our cortisol levels decrease, so our stress hormone is automatically reduced.

And you can see why the impact is absolutely huge and particularly prevalent for people living with dementia. When you start to look at how the brain really changes when we step outdoors. And not only that, I think we also know, don't we,we've seen brain scans of people when they've been sitting quietly, but we've also seen brain scans of people when they've been outdoors and walking. And the brain is so much more active when we're outside. And that can really make a huge difference, can't it?

And I do believe that that can slow down the onset of dementia and it can, you know, slow down those symptoms, never to a point quicker than dementia progresses, but it can certainly really, really help in keeping somebody more active much longer.

Absolutely. All of that is true. But it's hard, isn't it?

It's hard for people to get outside when they're juggling their day to day life or their bills, the housework, managing the condition, appointments. So it's about providing a reason to go, that meaning and purpose which is important to somebody to actually go outside.

You know, what's in it for them, what are they going to gain? And all of this takes some thinking about. It's not easy by any means.

If a person diagnosed is, you know, refusing to go anywhere because it's not easy. We need to find their motivation and look at what, you know, look at what their sort of golden nugget is, what inspires them 100%.

And I think that's really, really key to encouraging somebody to come out. But I also think it's important we are going to enjoy that as well.

So, you know, it, it can be something really small from just enjoying a cup of tea, watching a bird feeder in the garden, but actually if we're going to make it a little bit of a bigger day out, maybe it's about thinking, what do I enjoy?

You know, so if you've got somebody who's always loved doing the garden, but actually what you really want to do is just get outdoors, have a cuppa, do you know what I mean? And take five minutes.

Maybe a trip to the garden centre is something that's absolutely workable because it's something that motivates you, but there's also benefit for the person you're supporting.

So, you know, the reality is, is if we're thinking about just the person we're supporting and what they love, but actually that's not something we're particularly engaged in, it then becomes a chore. And we know that when things become difficult, we tend to put them off and not do them.

Whereas actually if we can incorporate somebody into, you know, what we enjoy as well as their enjoyment, then there's benefit for both.

And actually once you start getting outside, you start getting those hormone changes in the brain, everybody's mood will start to lift, which is so key.

And I think another thing to consider is if it doesn't go to plan on the day, if you only make it to the end of your driveway or you get to the garden centre and for whatever reason have to go back, that is not a fail. That is an absolute win to leave the house, to make those steps outdoors. And okay, fine, you didn't get that entire day that you were planning for.

That is still a huge win.

Without a doubt. And I think that really takes us back to where we started, doesn't it, is that dementia is a hugely complex disease of the brain.

And, you know, sometimes our approach to what we see as a success absolutely has to change because the minute we're stepping outside, the minute we're engaging in trying to do something, we're starting to feel that success. Those are the successes. And I think sometimes recording those successes, those little successes can be really, really helpful.

So, you know, I know we talk about Peter Berry, don't we, in his book of successes.

And I think that's such a brilliant idea that actually noting down the little things, the positive things of each day, even if they are only small, does help us reflect on that and can be really helpful when we're feeling life's a little bit overwhelming.

Sue here, just jumping into this conversation quickly to explain who Peter Berry is. In case you haven't heard him on the D Tour, Peter is a remarkable advocate who's been living with young onset dementia.

And he shared his story with us many times alongside his friend Deb Bunt.

He's an inspiring example of resilience and positivity, documenting his journey through what he calls his book of successes, where he notes the small wins and positive moments each day. This practice has been a source of strength for him and an inspiration to so many others.

It's a beautiful reminder that even when life feels overwhelming, reflecting on the good can lift us up. If you haven't read Peter and Deb's book Slow Puncture, I'd highly recommend it.

It's a moving account of a year in Peter's life as he navigates young onset dementia. When he met Deb, they began cycling together regularly, forming a deep friendship that has impacted both their lives.

Through Peter's perspective, Deb has come to appreciate the present moment even more. And their story is a powerful testament to friendship, resilience and finding joy in the journey. Sorry to have interrupted, back to Ruth and Manpreet

But I think we also need to think about practical ways of supporting somebody when they want to get out.

So I know something I've come across quite a lot is when we've got somebody living with dementia who does still want to remain independent and physically is probably quite active and able to do so. Actually that creates quite a lot of anxiety for the person who's supporting them, because there's some really, really helpful tools and ways that we can support both carer, with those anxiety levels and that worry, but also to enable the person who's living with the disease to remain independent, because that's also important.

If we're going to support somebody with practical solutions I would really be directing people to look at the Herbert Protocol. That's a brilliant incentive.

And it's a scheme that helps the police and other agencies find missing people with dementia or other vulnerabilities. It is recognised across police forces in the UK and it's as easy as filling in a simple form.

And the reason the police do this is because your brain is going into overload. You're worried, you're concerned, you're stressed, whereas actually all the information the police need is there on that form. And it's, it's not always the obvious things. It can be things like what's important to you, what's, you know, how's a really good way to communicate topics of interest.

So, you know, if the police do happen to find the person, they can initiate that conversation and support somebody when trying to get them back to, you know, their carer. So that's out there. It's a bit different in each area, but it's definitely something to look at.

But there's other carer support items, such as all the MedicAlert products. There's so many different things on the market to support somebody.

So you know where it might be that they use a MedicAlert product, they've got a scannable jewelry item that lets people know, actually, I'm living with dementia, I'm living with this complex disease right the way through to different trackers. Sometimes people find that works for them. Again, it's about kind of researching what's out there and what works for you.

But there is so many different ways we can proactively support somebody to remain independent, but also give that peace of mind to the person who is supporting them.

We get lots of questions about trackers, don't we? What sort should we get? Is it appropriate? You know, am I compromising their safety? But if it works, they can work really well, can't they?

They can do. And I think with all things dementia, it's about being that detective, it's about having those conversations and finding what works for you.

There really is no rights and wrongs when we're supporting somebody living with dementia, and there's really no instruction manual that supports it either.

But there's lots of tips and advice out there and arming yourself with information gives you the best opportunity to find those tips that work for you.

It's also trial and error, isn't it? What works one day may not necessarily work the so...

Definitely,

absolutely.

Dementia is an ever changing condition.

For some people, it be changing day by day, week by week, hour by hour, you know, and there'll be good days and bad days for somebody living with dementia like there is for all of us. So, yeah, it really is that trial and error approach and actually recognising those successes, giving yourself a pat on the back where it's deserved.

When something doesn't work, just taking the approach. Actually that didn't work today, but I may come back to that later on is absolutely fine.

Supporting independence for people with dementia is a theme Ruth and Manpreet have raised so well here. Independence offers us so much, not only to the person living with dementia, but also to those supporting them.

It's natural for carers to feel some anxiety, though, about safety when someone who has dementia wants to go out alone.

Gill, one of our adventure leaders who runs our supported holidays for people with dementia and a companion or carer, spoke about the Herbert protocol in episode 12 of the D Tour. And this protocol and MedicAlert can be incredibly reassuring tools to use.

The Herbert Protocol, as Gill explained, is a proactive way to provide emergency responders with critical information in the case of someone going missing.

It's a simple form that carers can fill out with important details about a person's routines, their favourite places and effective ways to communicate with them.

It's widely used by police across the UK, and this protocol ensures that emergency responders have access to relevant information to help them act quickly and sensitively. Unfortunately, paper copies of the Herbert Protocol can sometimes be lost or damaged or simply not available when they're needed most.

And that's why our sponsors for this episode, MedicAlert, offers a valuable solution, enabling members to store their Herbert Protocol digitally within their medic alert record and ensuring that vital information is always accessible in urgent situations. MedicAlert has partnered with the police to provide even more comprehensive support.

By storing the Herbert Protocol digitally, police and first responders can quickly access crucial information when someone goes missing, ensuring faster and more effective assistance. This partnership gives both the individual and those supporting them peace of mind in emergency situations.

For those unfamiliar, MedicAlert is a non profit organisation that securely maintains members medical records and this information is accessible to medical professionals and first responders in emergencies. Members wear a distinctive metal bracelet or necklace to alert responders, helping ensure they receive the correct care quickly.

Now here's Jonathan Adams from MedicAlert to explain more about their work and the positive impact it can have for those navigating life with dementia.

MedicAlert are essentially a tool to help people living with medical conditions in an emergency, allowing first responders to have access to all their critical information. This can often save lives, if for example, somebody's alert has allergies, it allows first responders to know this straight away when they turn up, meaning that they don't give them treatment that will harm them. It also allows them to give the correct treatment as soon as possible by knowing everything about this person's conditions and what they have.

A lot of the conditions that some people may have they might find hard to pronounce or they may forget about them.

And having that all on a database allows the emergency responders to have the full name and full details of the condition, which a lot of people do forget sometimes and it's understandable. And having that all there in one place allows emergency responders to know the full details of the situation.

So the medical alert digital records allows families to make immediate updates whenever there are changes in their medical conditions, medications or other key information that might be important.

The flexibility of this means that health records are always up to date, current, relevant, which allows more informed and accurate responses in an emergency.

And by giving the carers direct access to the updated records as their health needs evolved, medicAlert empowers families to take proactive steps in managing their loved one's care. And a sense of control and preparedness is vital for caregiving, especially when conditions like dementia may progress over time.

And then families having that peace of mind and knowing that they can support their loved ones more effectively is really important.

When you're in an emergency and you're going to have lots of questions being asked at you, you're going to have people around you worry and panicking, which will make you panic more.

Having the reassurance that all your key medical information is in one place and can be easily accessible for the emergency services allows a lot more reassurance and a lot more comfort in a situation like that.

MedicAlert's integration of the Herbert protocol with a digitally accessible database is a powerful tool for improving response times and supporting families during potential stressful incidents by including the personal details about significant places where anywhere about a loved one's life. So the database allows emergency responders to act swiftly with a deeper insight into the individual's unique background.

This foresight means that responders can search for individuals with dementia based on their personal patterns and preferences, helping them to intervene more quickly and effectively.

And the benefit for families is that this approach means that they can feel more supported knowing that their responses are guided with a comprehensive understanding of their loved one's life and history. It's the other way that MedicAlert is committed to be like compassionate, person centred and the real benefits of this are given to the families with the reassurance that they feel. Things might be okay at the moment, but you never know when you're going to need that help. No one's ever ready for for a situation where someone with dementia goes missing.

And being as prepared as you can be is the most important thing and allows you to have the most reassurance. So having a medical ID and filling in the Herbert Protocol allows you to know that hopefully nothing will happen, but if it does happen, you're as prepared as you can be. Everyone around you is prepared, the emergency services who use the Herbert Protocol and the medicAlert database, they'll be prepared and the situation will be able to be solved as soon as possible.

You hope you'd never need to use it, but having it there just gives you the reassurance, the peace of mind, not only to you, but also to your family.

Because the worst case as well is not only you go missing, but your family are worrying.

Your family are stressing about everything and it gives them the reassurance and the peace of mind that everything is as prepared as it can be and allows emergency responders to do their best work as quick as possible.

Thank you to Jonathan from MedicAlert for sharing the invaluable ways they're supporting carers and families affected by dementia. And of course, a huge thank you to Harriet for all her incredible work raising both awareness and funds throughout her journey.

There are many ways to get involved, and we'd love to be part of your journey. Thank you for listening, and we look forward to connecting with you soon.