Free Your Mind With LKJ – Dianne Gill, Dementia Support Charity Sage House

Hello and welcome to this week's edition of Free Your Mind. Let's talk about it with LKJ. Firstly, my apologies to the listeners. As you can see, I'm suffering a little bit with laryngitis. However, anybody that listens to my show knows it's not about myself. It's about listening with my ear to a voice that wishes to speak and bring out to everybody a clear message. Over the last few weeks, I've been concentrating on the mental health and the issues of dementia, Parkinson's, and Alzheimer's from a journey where I met with Baroness, um, Greenfield at a wonderful launch where she was talking about everything that she'd done regarding the treatment and at the scientific point. I then went on to interview Terry Scaife, a nurse who's worked with dementia and mental health for over 30 years, giving a perspective and opening my mind up to understand what dementia, Alzheimer's, and Parkinson's is a fact, and that there was not enough support for care. The carers, all this work, these hours they put in, and to help and support and support families. We then had a wonderful interview with Sasha Cole and John Thornhill, who have created— the only way I can put it is the Miracle App. The Miracle App is— that gives hope. The miracle app that remembers the moments of joy. The app that gives security knowing that wherever they go there is a badge with a unique number on that will bring people through. That yes, there will be grief and we suffer with that, but it's worth it over a million times to have an understanding of love. With that side. So when we're faced with all these issues and other things, I'm continuing on this journey now to build the whole daisy chain picture of what happens when you have dementia, Alzheimer's, Parkinson's. So I hope through the, uh, journey of the 5 interviews, all the way, every perspective Next week's guest will be a neuroscience gentleman that has devised a test that could and should show dementia before you even get to stage 1 to 7. But this week's guest is the wonderful and beautiful Diane Gill. I met Diane when I was at the launch of Dementia Mojo, Mojo Dementia, the new app. Beautiful, inspiring lady who had a voice, a voice filled with passion, a voice of somebody that intrigued myself. And in actual fact, you know, we spent many, many minutes that went, you know, but almost 2 hours telling me everything that she wants to talk about. So before I introduce Diane to this week's show, I'm going to just read her short bio to you. Diane Gill is married to her husband Jonathan, and they have a 17-year-old son called Sonny and a naughty Jack Russell called Bobby. Who live in Arundel in West Sussex. Her career took her, um, with her background consists of 23 years in the media with roles in advertising, marketing, and events, managing teams across the UK and Ireland. She was on an income generation committee for a local hospice for 12 years and a committee to give publicity and promote fundraising for dementia support for a year prior to their hub, Sage House, being built. After redundancy, she took 2 years off to enjoy family life, and then she was approached to join Dementia Support as a Corporate Partnership Manager. Which she has been doing for nearly 2 years. She has 2 close friends who both have a parent with dementia, so it's a cause very close to her heart. So Diane, welcome to my show. I do apologize with my voice, but it was important that, you know, I got you onto the show, which you gladly volunteered to, to continue this road in this journey that I have approached and with such wonderful people around. So may I introduce you now to our listeners? And can we just start really right back at the beginning? I would like to hear your story all through this, where you are, and occasionally I will come in and do some questions. So Diane, welcome to the show. Oh, thank you so much for having me, and it inviting me. And as you've mentioned, we met the other night at the Mojo Memories of Joy app launch, and there were some fantastic people there. And luckily enough, I got to talk to you, and now here we are. So I thank you so much. So yes, our journey's been over the last 6 years. So Dementia Support was, was born, as it were, by 2 people who had relatives who were living with dementia and felt the frustrations of trying to find out what services were available once you'd been diagnosed. And the diagnosis can take quite a long time to come. And they were just chatting at a wedding and thought, you know what, we really ought to do something about this. What can we do? So they spoke to other people who'd been affected by dementia and then contacted myself at the newspaper group. Because I knew one of the gentlemen who's part of the income generation committee that you've already mentioned at a hospice. They contacted me to see if we could get others together and how could we make this charity happen, make this building happen, bring these services together. So we obviously were there for the publicity side because we were looking to have a building. The first chats were within a residential area, so there is still a stigma attached to dementia, and obviously they needed to fundraise. They needed to make, you know, to get the £6 million together to create this hub. So there was an awful lot of work and background research that went into it, and a capital campaign to raise some funds. So I was doing that for a year, and obviously then I stepped back. My role became more national, but the hard work was still going on with this amazing committee. So what they managed to do, which was a couple of years ago, was to open Sage House. Sage House is a one-of-a-kind hub. It's the only thing across the whole of the UK that we have there. So it's an incredible building. It has a lovely community café, so anybody can come in. You wouldn't think it was a dementia hub, to be fair. It's very bright and breezy, and we just want people to come in and enjoy the environment. We have children coming in from over the school. We're next to the ambulance service, so it really is a community place. Place to come and, you know, just to have a look around and enjoy, enjoy a nice meal. We have daybreak services within our hub, so you can come and leave your loved one with us and go and have some respite. We also have hairdressers and a treatment room that are run by volunteers, and primarily those things are used by carers, which, as you've already mentioned, it does tend to be the carer, you know, that does need that extra support. We do have the memory assessment teams come in, and you can be diagnosed at Sage House. But we do work with people who don't want to be diagnosed at all. The unique side of our things is we have what the incredible people who work at our place called the Wayfinders. They are like sticky people. As soon as you contact us, you are assigned a Wayfinder, and they're with you and the whole family throughout your journey, pre and post diagnosis. So that could be that you need some emotional support. You may want to find out what grants are available to you. Any care home facilities, things that are available to you to live well at home with dementia, because that is our ethos. So they're literally there to do anything for you, which is incredible, because if you do live elsewhere and you do want to find out about service, you probably will be given a phone number. You ring for that service, you get another phone number to ring up. They're there for you, and as I've mentioned, the whole family, which is incredible. On average at the moment, we're bringing in and we're getting an extra 70 new customers a month, and last year alone we had 1,000 customers. So whilst we've been helping people since we opened, well, obviously we did have, when COVID hit, we had, we didn't have to close, but our customers were isolating, so we had to find new ways of how we could support them. They couldn't come in, but we needed to be a team and we had to be there for people still. Not ideal, but we knew what we couldn't do, so we just got on with what we could do. So the team were fantastic where they were able to speak to people remotely or on Zoom, whether or not people wanted a daily call or 20 calls a day, or if they want to be called once a week or whatever. We were there to speak to anybody. We also came up with some activity and wellbeing packs, and they were A4, 112 pages. Filled with all things to keep the brain active. That would be word searches, colouring in, songs, all sorts of things like that. And we printed initially 300. We thought they'd be great for our customers. Through social media and our shoutouts, we realised there was a massive need for them, and we've now given out 9,000 of those. They're totally free. We've given them out the whole, the whole of the UK and continue to do so. And we also had calls from Pakistan, New Zealand, and South Africa where we sent digital copies and our wayfinders were still able to support people within the family. So it's been an incredible journey, and as I say, on average 70 new customers a month is quite a lot. So we've had to double our wayfinders recently because the need is so huge. And yeah, that, that's sort of where we are now, and it's— we've always wanted to be a national charity. And this seems to feel that it's happening far quicker than we could have imagined. So our CEO is now looking at a national ambitions program on how we can have other safe houses around the country so people have access to the services that we do. Well, what can I say? Absolutely, yeah, wow. You know, with these wayfinders, like you said, that are helping, um, At the app, may I bring the Wayfinder into the Mojo Dementia app? Would they be able to help that person do it? I know obviously for John, as Sasha said, they have support and everything like that. Is this something that you think as a charity as well is almost like a miracle for them at home, or do you see it in a different— No, I think it's absolutely fantastic. When I mentioned this to the Sage House manager the other day, she said this was something that they thought about a couple of years ago, but actually I don't think we had the, the wiser way forward of how to make it happen for us. So I reached out to Sasha after the launch the other day and, and said I would love to have some more information on them that we could share. We have, we have a smart zone within Sage House, and that is where you, you have all of the gadgets that you can have at home to, to keep you safe. And I did say that that could be part of something that we could present to people who are coming into us as first time, but also the customers that we do have, we could share this with them. And also the pin badges that they had there, Sasha's going to send me a couple because that would be something that would be great to advertise within our SmartZone. So I'm really looking forward to working with Sasha and Dawn in the future and how what they've got can support our customers at the moment and going forward, all of the new customers, because thought it was absolutely fantastic. Yes, exactly, Diane, because we are now— people are beginning to listen because they haven't listened, and they are listening that 1 in 3 of us will get dementia, you know, and it will affect people. So with everybody now putting their heads together and networking together, and I think through Dementia, Alzheimer's and Partners, if you are in any of this group, We need to network. We need to network and your voices to be spoken and out to the broader world so that people are at home saying, oh, I listened to LKJ's show and there was that lady on there that went to there, to there, to there, to there, to there, that they've got their answers. So, you know, even on this show, we're saying from when I interviewed Terry, you know, was saying the compassion and the need for the carer that, you know, is worn down sometimes, you know, and their health is important to be well for the person that isn't. To the fact that there's a danger, you know, and when I was interviewing John, you were saying about this pin code they put on there. Being in media and news, you know, you've done media yourself, the amount of times, and even in the charity base, if you're doing, or anyone listening to this show, The fear that that person may wander off. When you see Mojo Badge with that little pin thing under there, like in the film about Joe, yeah, is that you'll be found so much quicker. It's, you know, for the emergency services, everything like that, is fantastic. So for yourself, when you're saying Sasha's going to send you these little badges, they are a godsend. And it's like going around without being intrusive to your person that's having it. It's like going around with a tag, isn't it, I suppose, and an alert system that knows if anyone puts that in, they can get you safe. Yeah, I mean, it's far kinder than a tag, to be fair, because they're actually quite pretty little things that you had on your coat. No, you know, it doesn't look intrusive or anything like that. And as you've mentioned, it is the carers, you know, most people who reach out to us at the end of their tether. Everybody wants to cope and think they don't need to ask for help. I think that's the English all over, to be fair. But they do reach out to us, and quite often people— we call it walking with purpose when people go wandering, because they do know where they're going. The trouble is they may not be able to find their way home, and a lot of this could be at night, which means the carers don't get any sleep. Sleep. You know, there's so much that is a part of that, that, you know, with having that app, having the PIN, I mean, those sorts of things will be fantastic help. And just going on from that, I do think because dementia is so, you know, it's the UK's biggest killer, and, you know, we all know someone who's been affected, and there's 120 different types of dementia, I think having Dementia Friends training, everybody should have that, whether or not that's in schools, that's in businesses. You know, I give Dementia Friends training, lots of people do. You could take 35-40 minutes of your time, but just little things to look out for, to say and not to say, is really, really helpful. And yeah, if anybody does want that, reach out, but there will be, you know, other people in your areas who can give it to you. But, you know, our youngest customer is in their 40s and head of a school. My ideal thing going forward would be for, as part of the induction with HR, is that you are given Dementia Friends training. You know, you need to be able to see, well, someone at work who was brilliant at their job isn't so good anymore. In a normal world, you might just think, well, let's manage them out the business, they're not performing. But there could be something wrong Or they could be supporting someone, caring for someone with dementia, and they may need that extra support. So I'm a big advocate of Dementia Friends training. I think everybody should have that, and it will help the care of the rest of the family understand what's happening as well. So yeah, as you were saying, you know, they could be the people, you know, you think, oh, they're struggling, let's manage them out. And that's where we have to be careful too. To, because they are human, they have the right to work. And disability inequality come in. So if you are, you know, this person's peer in, in work, that you— they should be infrastructures in there that they will be able to see that. And if you do have a problem, then goes on, you know, I think Holby City covered it, didn't they, with a nurse? Yes, they did. I'm just trying to think. She was an Irish nurse on there. Murder Charlie. Charlie. Yeah, yeah, it was. I can't remember what her name was, um, but yes, they— then they did it ever so well. Um, Duffy. Duffy. Duffy. That was it. Yes, Duffy. They did do it really well. And so, you know, the, the film that we saw, the short film with Tony Robinson, you know, that was portrayed. Oh my goodness. Yes. Um, very— um, choked you out. And where's that film going? Do you know what? I don't know. No, that's something that I thought— did I miss that at the show? Because I think what happened was it— that short message in this short film was so empowering with— I will not forget the lady, uh, the actress, um, when she had a red phone and, uh, she, um, said that Joe's gone walking again. Yes, and I think we were left with this awe of this film that was made, was so short, so quick, that said about it, but the message was so, so clear that we came out, was in awe of it, that I forgot to ask, you know, where it's going to be. So I thought, was that just me? And it's nice that you said that, but very— Asha, um, he's the same, and obviously with Sasha, because Tony Robertson and the team and the guys that made that film along with Tony Husband, the cartoonist. I mean, it was an absolutely brilliant night with everybody on this launch, this going in. Yeah, but yes, saying about that message, and I was saying, by using TV, film, and that as well, sometimes, you know, like when we talk about Duffy and the reason being like that, how she tried to hide different things and nearly broke her marriage through that, that was explained through, through the series, wasn't it? Yeah, yeah. And to go through, because thinking so much wrong with the anger, the frustration about being diagnosed. And then when she was, and she was trying to come to work, and you saw Charlie trying to encourage her not to do anything until it was dangerous. And then at that point, at that point, but it did show that her employers were disability inequality correct in showing you can still do this until there's a point that is for both of you and explaining. So in those situations, could somebody, if they had, um, a problem like this, could they ring the charity and one of your people would speak to them? Is that when a connection could be made and then they would continue through them. How would that work? Yeah, 100%. You know, anyone can call us. It could be the person who is worried about themselves, that they think, I keep forgetting things, I really think I need to talk to someone. It could be the carer that started to, you know, notice things about their partner, um, and, and, you know, and they're worried about them and they want to ask some questions. Or they could just pop in, as I say, you know, people do tend to do this. It could be the son or daughter of someone that they're worried about a relative that they're thinking, this isn't so good, you know, things are happening and things are changing. And, and, you know, when, when we had, um, the lockdown, the first lockdown, it only became— when, when things were easing up, it only then, when people were spending time with families again, that they realized that things were really wrong. Because I hadn't seen them for quite a while, because a lot of people went downhill, um, ever so quickly, um, in lockdown. Because, you know, you're isolated, you're not being stimulated, you're not going out to see people, you're not going to do the everyday things that you were doing. So, you know, as I said earlier, when people reach out to us, it is normally when they are at the end of their tether, and that's what we're there for. You know, at the moment we're supporting a 15-year-old whose father has dementia, who's 54, you know, which is obviously very young, early onset. And he has now reached out via his mum, who we're talking to, because he's got to the stage where he's getting really scared, and agreed to talk to us with his football coach at his football club because he felt comfortable that that was the situation for him where it would work. So that, you know, we go to them if that's how we do get through to family members to support them, you know. And his things are he's worried that his dad's going to forget him, his dad's going to forget his birthday. He's gonna not want to come to football anymore. Little things like that, you know. It's so— it's not just elderly family members. And I think I did tell you the story of Johnny— Don't— Johnny and Dolly, um, the other evening. Um, I've just mentioned that quickly. I'm just giving scenarios of how we— Yes, please. Yeah, I'm very grateful that all these different scenarios, and as many as you've got, for me on this interview and not about just having an hour and a half, is the fact that this whole hour— we only have 1 hour and we're 23 minutes into it— it's about giving the listener every opportunity to know. This is your platform. So, you know, normally I would be in between, in and out. I need to know, uh, for the listeners and anybody at each point, as if you're on that call ringing up. So there's many different scenarios This is what we're trying to open up, what we can do, because people have to understand it's not just about elderly people or stuff like that. You know, this, this also is a conversation I was having the other evening with Ashok, which was— who was the neuroscience guy who's coming next week— about, uh, you can take a test and everything before, except so you're aware. And obviously with this app and Speak of the Sash and everyone But it was about reality of getting prepared and ready. So if you're seeing a sign, even listen to this, it's all about preparation, whether you're doing power of attorneys, the whole thing on this app, etc. If there are things that are changing that you're noting, because I actually, I'm going to take, uh, Ashok's test. And the reason I'm taking his test, because don't you find in, in your mind— and what things that you can see in any damage that— if you took this test, would I know if I was going to suffer? Because if I did, then I would like to know now to prepare. And if that shows— if there's something like that— and Asha will go into more detail, which I think is a great thing, don't you? If you can find before— yes, I do. I mean, they do say that it, you know, dementia can develop over 20 years, and so I'm told. So I probably would want to know. And with some dementias, you can get medication that can slow it down. Again, I'm not an expert, our guys are, that's what they do. But, you know, if I thought there was something that could slow it down earlier, I'll definitely want to know. And he was an incredible guy, I know the one that you're talking about, who was also there the other night. So yeah, I would want to Well, for him, um, the show that I'm going to record with him— well, I'm not going to say too much about my test because I have some medical issues and that go back from childhood to go through, which he understands very clearly. And our disability can be invisible, um, and with stuff and with the brain and how it works is the fact that when you are out there as well, like you would say, when people see— and I think one of the things that I see is, um, and I'm going to speak to a gentleman later, you know, I've got these apps, it's all these new apps and everything coming out, so I'm doing a different show with him that, you know, there are like a spy app stuff that, you know, people are parking disabled, they shouldn't be, you know, are we getting a bit too Big Brother or are we doing this and we need to do it for that reason? But, um, let's say going back, so yes, the name of that You know, saying about that young boy, you're going to talk about the next couple in a moment. But one of the things is like the rugby players, anything like that, you know, sport injury, you know, have you had an injury, have you had an illness when you was younger, all this. I do believe that that's, you know, because we've had damage to the neurons, the They send our messages through. It's how it happens. And when you look, you know, I'm going to talk to you about Barbara Winter shortly, other people, but I just want the listeners, if we may, now, if you do, to explain those bits that you were saying. Yes, so the story that I was going to— a case study that I was going to give you was some of our lovely customers, Johnny and Dolly. And this really just— it's It's a story that does have a happy ending, but it could have been, had something completely opposite to that. But this just shows really what we do, and as I've mentioned, the Wayfinders, it's a totally free service. So when we had lockdown, we had a call from Johnny, who was quite distraught because his lovely wife Dolly, they'd been married, it was their second marriage, for 30 years. She kept getting on a train or a taxi taxi from their home, which is in West Sussex, to Brighton. She was going to see her sister, thought she was going, you know, this is back to walking with purpose, she was going to see her sister in Brighton and she was going with a bag of cash and she just wanted to get away from her home. So the police kept bringing her home and he was getting to the end of his wellbeing and he couldn't cope and he was begging for help. He tried other sources and there was nothing available to him. So our wayfinders, even though it was lockdown, everything going on, just felt that there was a massive problem here that, that could, you know, grow. And they did the right thing because when they did go around there, they saw that there were indeed massive problems going on within the home. So Johnny had a shotgun. He was going to kill himself because he couldn't cope. Dolly was sleeping with a knife under her pillow because there was a strange man in her house who she didn't recognize, and she was worried for her own safety, which is why she kept trying to go and see her sister in Brighton. So a very, very, um, very stressful situation all round. So the Wayfinders, they managed to get Dolly into a care home for a couple of months. Luckily, she was able to get some meds As I mentioned earlier, sometimes you can have some meds that can help you, but she had some meds and gradually at the care home started to feel a little bit better. With Johnny, obviously his mental health and everything was suffering, so the Wayfinders worked with him and how they could, you know, get his anxiety levels down, how he'd be able to work with Dolly so that they could communicate again better. And they started to have some phone calls to the care home, and she was recognising that this was Johnny. And the amazing thing was, so after a couple of months, she's now home and they are having day trips out together. He says that he feels like he's got his dolly back. Obviously, you know, there is a journey there, and she, you know, she will, you know, we know how the ending is, but for us to have been able to step in and help that couple when that situation could have been absolutely dire, and we have, and it's a little mini success. It means the world to us. I can't tell you, I am passionate about it. The team are passionate about it. We just want to help people, you know, live well with dementia and support those carers. They're the people, because if their wellbeing isn't of a good enough standard, how will they be able to cope? Which is, you know, why we're able to offer the Respite at Sage House, you know, that they can come, whether or not they're just going back to bed to sleep or whatever. So the service is amazing. And as I say, we're helping people everywhere. So, and we do want to. So if people want to talk, want to find out what services are available to them, then we can. You know, another gentleman I was talking to, I met through networking, through business, he came in to see me and we didn't even go into Sage House, to be fair. He just came into our office and he started talking about things. Yeah, I know, not even mentioning that there's any dementia, which quite often happens when people talk to me. At the end of the conversation, they'll say, I'm really worried about my mum, I'm really worried about my dad, which is quite nice because I feel that they're able to open up to me. But this one particular guy at the end of our conversation said to me, I'm really worried about my mum, she's in a care home in the West Country. And he started to cry, which is just, it's just so sad to see someone that desperate. And gradually throughout the conversation, he was telling me that his dad is at home, his mum's in the care home, which I've already mentioned. And they thought initially when she went in, they'd been told by the doctor she probably had about 6 months to live. This was 2 years later. And why, why he was getting himself so upset was because the money was running out to pay for the care for her in the care home. And he wanted some advice and some help from the care home and social services. So for the care home, what happens when the money runs out? What are you going to do with my mum? And social services, are you going to be able to help? And no one would phone him back. He couldn't get to speak to anyone, and he doesn't live there. So you can't imagine the anxiety levels and upset for that. No wonder he was— he started to get upset when he was talking to me. So I got one of the wayfinders to come over to our offices it's literally across the pathway, but to come into our offices to have a word with him. And one of these was Louisa, who's one of our Wayfinders, and she was amazing. And she just said to him, look, if you're going to give me permission to talk to that care home and talk to social services on your behalf, I will do it and I will sort it out for you. You know, and just the power and also empathy in her voice, the relief in his face that someone was going to help him was incredible and just so grounding. And I should get, you know, I see it every day, but it was just so lovely. So now they're working with him to sort this problem out, and that, that is what we do. And yeah, as I say, we're there for everybody. We've had people who've been with us from the start. So I can think of another couple, Bob and Ann, who are amazing, and they They're one of our first customers, lovely, lovely couple. He was a carpenter, he was a karate expert or teacher, as it were, you know, and we've got an incredibly moving video on our website if anybody would like to have a look. Our website is www.dementiasupport.org.uk. There's an incredible video on there where Ann is talking about how they found us, and you know, the words that she's saying is I'm losing my husband, I'm losing the love of my life, and I couldn't do— I couldn't go through this journey without the Wayfinders. You know, these stories are incredible. And then when we had lockdown, Anne had fell and broken her wrist, and she was worried. She obviously— she's the main carer— wouldn't be able to look after Bob as much. So he went into a care home, which she thought would just be for a little bit. They'd never spent a night apart, I think, in 47 years, something. And he had to go into the care home. Of course, then we had lockdown, so she couldn't even see him, you know. So we can't— again, you can't even imagine how that is. So she was working with the Wayfinders, they were supporting, they were working between her and the care home on how, you know, we could get the communication going. Could they get, um, uh, um, what you call it, um, oh, I can't even think, Kindle, or a Kindle, or a, um, This is happening. How the communication could be that she could speak to Bob live. So they worked all of that out. So it wasn't easy when people are old school, technology isn't— is okay with that, but they managed to sort that out. And Anne actually now comes into— I saw her in the cafe the other day— comes into Sage House. She wants to talk to people. We have chatter tables, uh, which are there, and anyone can just rock up and talk to one of the volunteers and to talk about you know, whatever it is. Doesn't even have to be about dementia, but Ann's quite often in there, and she's there to talk to people at the beginning of their journey because she's been through it. And that's great, you know, to have it out of the horse's mouth— what could happen, what support you can get, and, you know, and what the Wayfinders do. So, you know, there's so many of those stories, and, you know, we all know where it ends, but we're there for the whole journey. And quite often they're after the journey, you know, then there's a grieving process, but we're there for that. There's a group of ladies who come in every Friday. They've actually all lost their loved ones to dementia. They still get together. They want to have a meeting because they're supporting each other now. And again, they talk to other people who may be in there who, you know, could be at wherever part in their journey. So yeah, that's some incredible things that we've had going on. So Yeah, completely. But one of the things you were saying, that when you had that conversation with that gentleman with his mother in the care home, didn't know when the money was going to run out. Is that not anything that— so, you know, when you've seen your consultant, the consultant says, 'Mum has,' or, 'Dad has dementia,' and this is where we go over which stage you go into a care home. And the decision the family makes, or at home. But we're talking about in the care home sector at the moment. With your charity, is that not given in a leaflet? You know, when we go to hospitals, they give us these leaflets, etc. Is that not given at the first instance? Well, that— we actually have solicitors that come in. There's 4 different solicitors who come in and use our rooms to give free advice to people on what's going to happen, basically what, what costings could be, how you can get help, how you can get support. And we have that. This gentleman, because his mum was in a care home in the West Country, I just don't think he'd had the help or knew where to turn. Again, this is why our service is a unique service. If it's like every one-stop shop, everything is under one roof, whatever you need, we'll get you the right advice or put you in touch with the right people. And it just shows that that isn't everywhere, and that's, that's what we want to change. We want to change it that other people have got access to the services that we have, you know, quite right too. So currently, I mean, the National Ambitions Programme I mentioned earlier, our CEO is doing, so knows far more about that. So obviously I can't give information on that, but But what I can say, just as an example, I met a lady through networking. I mean, the power of networking is, is incredible. I met a lady from Age Concern Hampshire, and they have 5 buildings in Hampshire where they have day services for elderly people. And just by chatting to her, she got her CEO to reach out to us because they're realizing that they are having an awful lot of people with dementia, but they don't have the services or the same capabilities, I suppose, on, on how professional-wise, on how to work with people with dementia and how to make their services better. So they came over to Sage House to see what we've got, and as I say, it is a unique service and it works. We've got the template there. We then went to visit one of their buildings to see what they've got and how they could what we've got, how they could invite the memory assessment services to come in so they've got an added benefit there, how they could invite local solicitors in to give some free surgeries on how to advise people. So we're working with them, we've got— and I think that'll be an ongoing thing because their trustees now want to come in, but that's just one group. We do have other people that we're working with. So yeah, I just think it's when people don't realise what's available and they don't know where to turn or who to phone. No, so that's, that's the one of the questions you're saying on there. So I'm at home now, I think, oh, my father's not, not too great, and thinking, Dad, you know, things aren't right, and to pick up the phone. Where would I look because obviously I haven't gone to the doctor, I haven't got it. So would you, you know, it seems the first place goes to your charity. Yes, I mean, if people want to do that, then as I say, we can talk through the steps. We can tell you, you know, you do have to originally go to your doctor to get a diagnosis, and that obviously involves lots of, you know, memory assessments and And it can be scans of things. Again, I'm not— that's not what I do. But the amazing Wayfinders, that is what they do. They know about all these things, so they're far more qualified to talk about than I am. But we're there for, for anybody if they're worried about themselves, if they're worried about a loved one. You know, that's what we do. We at any stage, you know, as I say, we work with people who never ever get a diagnosis. They don't want to be. It doesn't mean they can't start their journey. And also, if they're just thinking about— they're a bit worried and they're looking to go to their doctor, currently, I believe that it can take 6 to 8 months to get a diagnosis, and you may go downhill quite a bit in that period of time. So by reaching out to us at the beginning, even if you're waiting for a diagnosis, we can still work with you. We can still help you if you're worried about yourself or someone, you know, who will be getting the diagnosis within your family. I mean, the earlier the better, to be fair, to find out what's available to you, you know, at the beginning, before your journey even starts with your diagnosis. Your journey can start a lot earlier by just talking to us. So I would encourage anybody to give us a call if they want to, because, you know, don't wait until you get the diagnosis, because you could have had help before then. Yes, completely. And this is When I'm going now into what we've been talking about before with Terry, etc., John, Sasha, now yourself, which is becoming a very clear picture even in our interview, that if you are at home, you are struggling, and you don't want to be stamped and say— because some people look at it in that way— don't stamp me, because if you put that stamp on my head, everyone will think she's she's losing her marbles, it's off like this, which is wrong, and actually it's unfair, and it's cruel, and that shouldn't happen. But if you do feel— and then picking up the phone to yourselves and say, okay, you don't want to go— would your Wayfarer find us, um, connect with them at that point, or would it just be generally someone advising what to do? I would say any point. Like, literally, if anybody is is just thinking, you know, something's wrong, they don't know what it is, they don't want to— as we've just said, there is a stigma with dementia. Anyone can ring us at any time, and as I say, it doesn't have to be the person that's worried about themselves. It could be the daughter who's thinking, my mum's not right and I'm really, really worried about it, and doesn't have a relationship with the local doctor. But obviously you've also got down to, you know, you can't just talk about someone's health with anybody within the family. But, you know, we're just, we're just there when, when that worry starts, or as I've also said, when you're at the end of your tether. You know, another example is with these activity packs that I've mentioned. In lockdown, I was driving around and then delivering them myself because we wanted to get them out to people as quickly as possible. And I went to see a lady, I and I didn't know her, but she was on our list to have a pack. And she opened the door to me and we just got chatting. As you can tell, I do like a chat. And we got chatting and she was just standing in the doorway and her husband kept coming from the lounge to the kitchen for a cup of tea. And she kept saying, what do you need? And he said, I need a cup of tea. She said, I've put one in the lounge for you. And he walked back to the the lounge, and we were just chatting about general things. And then 2 minutes later, we'd walk behind her again to the kitchen. What do you need? I need a cup of tea. Cup of tea's in there. So you can imagine the repetitiveness of that. She was keeping— she was being ever so calm and ever so obviously lovely lady, um, who's obviously, you know, loves her husband and wants to care for him. But she was— we were talking about really how before lockdown she used to meet her friends for lunch now and then, so they've got her out the house and you know, it really, really helped. And, you know, and she, she missed doing that. And she said that her daughter said, you know, you really need to get some help in for that. But she said, you know, how do I know when to get help? Is it breakfast? Is it lunchtime? Is it evening? She said, you know, she said, for example, this morning, she said, I got out of the shower and— sorry, she was in the shower and he came in, he wanted to use the toilet. And she said, I thought, well, I'll get out as quickly as possible, give him some Prisfor and she said, by the time I'd got out the shower quickly, he'd wet himself. So she said, I just then, she said, I thought, oh my God, she said, I've got to clean him up, it's all over the carpet. And she said, I shouted at him and I didn't want to shout at him and I felt awful shouting at him, but I just felt that all the jobs that I had coming in front of me and she's at the end of her tether. And she said, you know, I just, she said she'd spoken to one of our Wayfinders once, which is how she was on our list for a pack, but she didn't want to bother anybody. She didn't. That's how she felt. She didn't want to bother. And I said to her, please, please call us, or I can get someone to call you because you do need to talk. You— if, if whatever help is available, we can find out if it is, or just to support you. And she was ever so lovely, and she did phone in. And actually, when I went round to take the next pack to her, which was the next month, I took her some flowers round, and I thought, because she really resonated in my heart. And she opened the door and I said, "Oh, I've bought another activity pack for you." And she said— she just burst into tears and she just took the flowers off me and closed the door. And obviously I did want to talk to her, but I just thought she just felt that people do care, we do want to help you, and we're there for you. And another example of helping people. So when we had, again, when we had lockdown, there was, some of us stayed in the office. We had the amazing people working from home, but some of us stayed in to get the packs ready and just, I mean, we were so busy. We're helping anybody. It wasn't just people with dementia. But I was with the CEO in our office one day having a chat, which was rare for me to be in there. We're right next to the car park, and I saw a gentleman pull up in his car., and he just sat in the car and I just thought something's not quite right. So I went out there and I said, are you okay? Can we help you? And he was crying in his car and he put the window down and he said, oh, I was just going to come into Sage House. And I said, well, we're closed, but I said, but we can, you know, we've got people working from home if you wanted to talk to somebody. And he said, oh, okay. And I said, I tell you what, I said, do you want one of our activity packs? I was just trying to cheer him up really in a way, and I said, they get something for you to do at home. I said, they're ever so good. I said, but the number's in there to call one of the Wayfinders if you want to do that. You know, I didn't know this gentleman. So he thanked me and he went, and I got a call from one of the Wayfinders later on that day, and his wife had actually been a customer of ours, and she died 3 months before the first lockdown, and he came because he wanted to just come in the café and feel that he was part of it, and he felt that he was coming where he used to come with her. And by him phoning in, obviously he was, he was grieving, and they had arranged that they were going to have a call with him every day for a while, and then I do believe it then went down to weekly. And I just think Imagine if I hadn't been there and that poor gentleman, you know, wanted to just reach out and feel that he was, you know, part of us and part of his wife. And through the packs and through phoning in, we're now helping him. Yes, his wife has sadly passed away, but he still needs some support. And that's again what we do. It's the whole journey, whoever is in that journey, that we, you You know, we want to be there for people. Yes, completely. And I, you know, I can resonate with the gentleman in the car because for many of the viewers, listeners know my story, that my mum passed, but my dad found love again. And she did. They only got married in July and she died in August. And my father now is looking and going like that gentleman is to those places where he went before. So when you hear that man and when he's crying and he's on there and the neighbours are looking, is that support? And it's important so that when you looked out the window, you know to go and see that. So even though we are talking about dementia and everything there, any listener that's in there may have something that although it's not quite dimension, and on that you see that person is about reaching out and looking for that because it is the help. Then in fairness, that gentleman that came there that wanted that review, you know, was that— that's where she went. You know, if I could go in that room, lockdown and COVID, you know, it was, you know, we've all had wars, say, you know, different the wars, but this pandemic, and now we've obviously got this outbreak again, um, and the scientists are going to be able to deal with it without causing any panic or anything like that. I believe very much that we have some most amazing scientists, etc., to do that and going through. So we have to wear face masks and everything again. That itself may bring a bit of worry to your charity and the people around there, even that it's only, you know, from Tuesday we've got to wear face masks on public transport, but for somebody with dementia or people working, would they wonder if they were going back into something that wasn't— was quite traumatic, you know, where they're going to be isolated again when they do remember some of it, or do you think that won't affect them? I think there's always a worry for people, you know, we still— our staff, we obviously wear face masks in Sage House, and whilst our customers don't, I think a lot of them are worried about, you know, that there is still a virus out there and that they could, you know, potentially catch something. But I think— I don't think anybody wants to go back down into more lockdowns, and I hope that doesn't happen. I mean, a lot of— we saw a massive decline in some of our customers, as I've mentioned earlier, with the lockdown, a lot of our customers had to go into care homes because the carers couldn't cope without any respite that they used to get from coming in to use our Daybreak services. And, you know, whilst that, you know, eventually is going to happen, we do want people to live well with dementia at home. And, you know, it's— I hope that doesn't happen again because, as I say, it's It's for the carers, you know, they need to have support and to have it all on their shoulders whilst we can do things virtually and things like that, it's just too much and I do think people are going to worry about it. I hope it doesn't happen, I hope we don't have to close and again, but obviously if that did happen we would have to react how we did before. We know it's not ideal but we're there for people, whatever. So whilst, you know, ideally it's in person, it doesn't need to be because we're, as I say, we're helping people. We have a map at work of where we're helping people. It literally is across the whole country, so we'll be able to continue to do that. But let's fingers crossed that it doesn't happen. No, exactly. We always have to keep the positivity, and we are people that, well, helpful. And yes, this is just surely for prevention, and everybody, you know, to continue on the journey with when, you know, things are happening like that. And we have to put our faith in others to do that. And like you said, running around, that support will still be there. So for anybody that is listening, think of God Face Masks, listening to how you were delivering the packs during— sorry, during— through lockdown. That you got it. It was still there, it was tough, but the support in the Army is there for everybody to do this. And you know, there is an event tomorrow which is for Parkinson's, you know, for a cure, you know, trying to find a cure for that. And obviously, you know, do you deal with Parkinson's as well? I think we— yes, we do. I mean, we deal with many illnesses like that. So yeah, our Wayfinders do come across all different things. And, you know, yes is the biggest answer. I think they probably come across so many things that are entwined as well and interlinked that, you know, that can lead on to a different illness from them. So they do. I mean, I've said it a few times, they're incredible how they support everybody. It's a tough job, you know. I get emotional when, like, the lady who I took the flowers round, you know, that upset me, but it's obviously in a nice way. They deal with it all day, every day, and they deal with it so, so well. It's incredible. So they haven't— I don't think there's anything they haven't seen, to be fair, and they've learned throughout their journey as well, you know, what what extra services are becoming available. They work with, you know, the local services, the NHS, and all things like that. That's what they do to keep on top of things and to give the best advice, really. That's what they do. Yeah, completely. And you think, you know, was it 6 years since HHS, you know, when we coming to get the funds and approaching yourself to get this wonderful place open? Open for everyone to connect and needing more. Because I know it was Dame Judy Dench was on, you know, they pledged all this money. So she was like chasing, like, you pledged this as the government, give all this money, trying to help, where is it? You know, so it was a bit of a debate. Was I correct on that to try and— why hasn't anybody received this money that you said you were going to get? So she was quite vocal about that. I think I'm quite right on that, aren't I? Yes, I think you are. Yes, I do remember seeing something about that. I mean, the difficulty is there is this— there isn't much government funding around dementia, to be fair. I mean, we— I know our building, it's a million a year to run our building, and I believe we get £32,000 off the local authority, and that's because we have the memory assessment teams come in to use our offices. Which is obviously great as we work with them. But I think, and I do believe that that was a decision that was taken at the beginning because they didn't want government funding cut, or I suppose you could be advised what to do by them, whereas they wanted to keep it individual. You know, our centre is run by fundraising, you know, so we do have the control and everything there. But I think part of the National ambitions programme, which I mentioned earlier, which I really don't know lots about because it's at the early stages with the CEO, is how we can work better with the government on to give or offer these services around. I do believe that that is a part of it, but considering it's the UK's biggest killer, they should be doing more, in my humble opinion. And I totally agree with you on that, Diane, because this— I know that we will pay our taxes is our money going, etc. I mean, this money that's given as a care— is that like attendance— carer support thing, isn't it? You can get a carer that comes in and assists and help. They get something like £70-something you can make a claim for, you know. And they— but they have to do 35 hours for that. Yeah, I know. Topped up. I mean, seriously, seriously, you know what needs in there for that person to go. If they can do any help give that up so that it does actually open up the reemployment side. But that was a bit greater. But Catherine, you can't— if you're going to give up 35 hours a week to help somebody with your voice, and that you don't have to physically be there, you can be over the phone speaking to them, you know, guiding, you know, they're feeling mentally— they can pick up that phone and they can speak to you. And then you've helped them, or they have gone and said, oh, I'll pick you up some shopping, except to do it, they've committed to that. I don't believe that should be capped at £127, and that's the voice that I'm gonna go— that's the voice I'm taking to Boris Johnson, that unleash the cap, because then if you have got— and it can be a member of your family that can help and do that. So if you've got your 17-year-old grandson that's off at college or doing something, oh darling, can you pick granddaddy's stuff up? Could you go and get— yes, Granny, yes, of course. But it's their earning. And said, well, we can get that, because it's about their pride as well, that they're also giving something back by having the funds available through the government to pay that person. It's dignity as well. They still believe if you're a pensioner, then you're entitled to have this because you have qualified under government and different funding that you can do that diet. That person can't do it, but sorry, Gran, I can't do that, and I can't take that off of you because they want to do that because I earn too much money at work. Work, or you've got your neighbor that's on a pension. Well, my dear, I know I'm going to— if we get this, you can do it. So I can't do that, but that's available from— so those people, there's probably thousands of people not taking that up to help and with their independence, which is wrong. I 100% agree with you. I just think, you know, that's available. If that's available, then you should be giving it to the person that— I know you can go to a carer, but it ultimately has to be paid to a carer. If you've got that, you're in that position, it should be paid to the person who is entitled to it, um, and then it is given out. You know, like, um, what you got, you got like direct payments and everything schemes, haven't you? That is given on a card. And if that person's come, they've come and done their 35 hours, given their 71 pounds, but it's all traceable. Yes. Rather than give it in and say, well, you can't go to work. How is anybody going to help anybody, you know, if they're going to be punished for helping? And it's funny, but I can't do that, I lose my job. Or somebody go, yes, it's free, but when you're asking for somebody to give 35 hours Well, I'm sorry, Boris, I'd like to see you work for 35 hours, um, for that money in your own time and still do your job, or not work, or so. Well, and they get into a benefit trap. Then if they're on that, they can only earn that amount with that. Goodness sake, then they, then the government paying more money out on housing benefit, etc. You're taking away. And then when you want to donate to a charity Charity. You know, if everybody in this country just gave £1 today, £1, it would make such a difference to whatever charity. But we're not saying— I'm pushing it in, into the face. So we do pay out on advertising and everything like that, which is hard. And some people say charity begins at home, etc. But you never know when you're going to need that yourself. And the wonderful, um, job that you're doing and the pleasure I look forward to seeing you tomorrow. I may not be able to speak tomorrow, but I'll still be there in presence. As long as I can physically get myself there, and obviously I have somebody come to help me anyway, so that's good. And I'll be there. Won't be saying a lot, but we'll be texting. We can sit and text each other. It's a sign, it's a code of coming through. But it's about the support and everything. And thank you. I believe we cross our paths for a reason. And then, yes, one on the network, and keep networking everybody, you know, that is out there. And you've got a voice with dementia, it has to be Alzheimer's, everything. The Baroness with her studies continues the study of the brain and the conscious mind, support on womensradiostation.com. We support with mental health and everything on there. But I'm afraid that's it. Thank you for speaking and coming on Free Your Mind with LKJ.