It Can't Just Be Me - Dementia in the Family with Sian Welby

Episode Date: October 9, 2024

In this special episode of It Can’t Just Be Me, Anna Richardson sits down with radio and TV presenter Sian Welby, along with special guest Jordan Adams. Both Anna and Sian share their experiences of having a parent living with dementia, while Jordan offers a deeply moving account of how dementia has affected his family after his mother was diagnosed at just 47, when he was only 15. Following this, he underwent genetic testing and learned that he has inherited the faulty gene that caused his mother’s illness, meaning he is likely to develop frontotemporal dementia at a similar age. Jordan discusses his journey, the ways he copes, and his incredible efforts to raise funds and awareness to help change the future for everyone impacted by dementia.If you are struggling with any of the topics discussed in this episode you can find some useful links for help and advice here: https://audioalways.lnk.to/ItcantjustbemeIGIn the coming weeks, Anna and a panel of experts will be answering YOUR dilemmas! If you have an 'It Can't Just Be Me' you would like discussed then get in touch with Anna by emailing [e-mail] Hosted on Acast. See acast.com/privacy for more information.

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was one of the buzziest titles at Sundance Film Festival this year, garnering rave reviews and acclaim from both critics and audiences alike. See A Real Pain only in theatres November 15th. Hello, I'm Anna Richardson and welcome to It Can't Just Be Me. If you've listened before, hello. And if you're joining me for the very first time, it's great to have you here. This is the podcast that helps you realise you're not the only one. It's a safe space where nothing is off limits as we try to help you understand that whatever you might be going through, it's really not just you. So each week I'm joined by a different celebrity guest who will talk through the challenges and hurdles they faced in their own lives in order to help you with yours. I want to know about it all, the weird, the wonderful, the crazy because these conversations are nothing if not open and honest.

So let's get started. Today is a very special episode for me because I want to talk about a subject that's personal it's painful and it's very close to my heart so we're going to change things up a little bit because this week I'm bringing my own it can't just be me dilemma to the table so here we go it can't just be me that's living with dementia as a part of the family. And I know that it's not just me because there's nearly a million families dealing with exactly the same thing. Some of whom I met in my Channel 4 film, Love, Loss and Dementia. So today I'm joined by two incredible people to explore this pretty harrowing subject with me.

Sian Welby, who you'll already know well from Capital Breakfast and of course This Morning, and also Jordan Adams, campaigner, who was part of our Love, Loss and Dementia documentary. Hello both of you, how are you? Amazing, thank you so much for having me on. I'm like really thrilled to be here to be able to have this conversation in such like a nice way. I know. And Jordan, how are you? Yeah, I'm very well. Thank you. Legs are a bit tired as I've been raising lots of money this month. I know you have.

But pleasure, pleasure to be here. And thank you for having me on. I'm going to talk about your campaigning in a second. Actually, I know you're absolutely knackered because you've been running the length of the country. But Sian, I'm just going to start with you. You've got a really similar story to me because I know your dad has got vascular dementia as well. I know that you've covered it on a film for This Morning. So I'm so sorry to hear that because it's really bloody difficult. But just tell me a little bit about your dad and what he was like before the diagnosis. Yeah, I mean,

I can relate to you so much Anna and when I saw your um your film on dementia I resonated even with the relationship you and your dad have like my dad's just comedy and you know he's um a Yorkshireman who doesn't say I love you but you know that he does and he used to do everything for us handyman built the house that we lived in yeah built it but he also worked on our car i never had to go and i never didn't pass an mot because he did every little bit on the car he was just such a practical man and still is to an extent but they're the little things that you lose and a bit like anyone that's going through dementia in the family or maybe their loved one or whatever, you start seeing those real traits that you know that is so them,

such a signature thing about them, start to go. And that is what's frightening. That is really interesting. So how old is he now? My dad's 84. Right. So my dad's 83. So when did you start to notice things going a little bit wrong with him? Or what did you notice about him that you thought, that's not dad, that's a bit odd?

Well, it's weird, isn't it? Because you start to learn that he probably had the start of dementia years before he ever sort of got diagnosed. He only actually got diagnosed during COVID, bizarrely, and this is because he also got leukemia so I wonder if the whole thing is linked we don't know if if the leukemia has triggered this because it's a blood cancer or whether it's the medication that he was taking for that so we don't fully know because dementia and Alzheimer's isn't in the family. So the thing about vascular dementia is that it isn't necessarily a genetic thing. It's an underlying biological cause, disease that causes a dementia. So what's good for your heart is good for your brain. So if your dad has had any, say, little strokes or if he had high blood pressure or diabetes

or perhaps he was a bit overweight, then that all contributes to the blood vessels in your brain slowly shutting down basically, which is what causes the dementia. So I just wonder whether your dad had been living with this for a long time and you never would have known that there was anything going on. Like you say, if it hadn't been for COVID and leukemia.

Yes, and I think like you're saying, when I look back, I used to get so frustrated with him either repeating a story or losing stuff all the time. Where's my keys? It'd be a common joke in my house. Where's dad put the keys now? Like, and I think what, so those things are so small that they'd be just become a funny trait that you like, you know, take the piss out of each other for. Yeah.

But that's what's so tragic about that. Like you say is because i did the same with my dad we're just teasing which between us me and my brothers we go bloody hell dad's forgotten our name again you know it's ridiculous got somebody's name wrong in the parish because dad's a vicar yeah and we just thought it was funny yes and now looking back it's like no he this was obviously going on for him for decades for years his brain was slowly starting to become more and more occluded so you'd never had an official diagnosis then by the sounds of things no and it's all still been confusing because i think it's so much information to take in and something that i think don't feel embarrassed about if you're the the caregiver or the partner or whatever

because you're so overwhelmed with information we'd'd ring my mum and say, so what's going on? And she almost couldn't tell us. She was like, well, the doctor, and it's all big words. And she suddenly was like, I don't know. I think they said this. And we've got to go back for a memory test and all this stuff. But the long story short is he started forgetting bigger things. And it was like he would forget a route to his mum's house or, know to where to the supermarket it was started to be

things that you really shouldn't be forgetting so it was becoming noticeable yeah yeah and then your mum obviously thought i need to take him to the gp we need to go to the memory clinic yes and the memory clinic is what really got the diagnosis because he started doing the actual memory tests that they put you through and they and then they did a ct scan i think on his brain yeah i was going to say because the ct scan will then show up that there's little sort of like pools of of blood in the brain yeah um that has then caused the dementia god how has it affected your family well in a way so much because my dad did everything like i say he was literally the man that did the bills like he was practical but he also did all the financial stuff. So my mum has gone from having the most practical husband

that did everything to suddenly the burden of all of that has fallen on her. She suddenly had to work out how to get builders or how to sort of plumbing issue because my dad did all of those things. So everything she took for granted has been ripped away from her so my poor mum i feel for the most because she's lost the husband that was sharp witty with it and did everything and she's now had she had to quit her job early did she yet because she was a nursery teacher she retired early to become his carer and then basically she's living in it day in day out so whereas i go up and visit every now and then they live in Nottingham I'm London I don't witness how bad it gets because I just see snippets of him and she always says oh Sian when you come home he almost puts on his best yeah exactly so I've got

exactly the same thing you're so right to say that our stories cross over an awful lot and we've both done films about this because I've got the same I live in I live in London you know my dad's up in Staffordshire with the rest of the family so I don't get to see him as much as I should or can and then when I go home I notice that he's got worse yeah or I get phone calls in the middle of the night from his carers or the emergency team to say your dad's fallen or your dad's had a stroke he's in hospital how do you feel how does it make you feel as a daughter oh so much guilt there's so much guilt because I really am close with my dad I've almost or your dad's had a stroke, he's in hospital. How do you feel? How does it make you feel as a daughter? Oh, so much guilt. There's so much guilt because I really am close with my dad.

I've almost got more in common with him than my mum, we're very similar. Similar sense of humor, similar attitude towards life. And so I know that I would, he would benefit from me being around. I know that and I can't do it. And there was a stage where I was racing up every Wednesday and it was burning me out.

I was trying to go back home every week to see him when he was really bad. And because he has almost plateaued at the minute and he's in a very stable stage where he doesn't seem to be getting much worse. That's good. Yeah, it's just in this very stable stage. I've pulled back a little bit for my own sort of sanity, but then the the guilt kicks in it's all on my mum or my sister who's up there well

i mean for your mum though that is an absolute nightmare you're describing what support is she getting have you had any support from either the doctors or so the health care community social services social care what support is she getting well it's hard to i don't want to knock anything because i do love and cherish our nhs and and i'm so grateful for so much stuff we do get for free and and the care that's offered however when my dad was really bad in our case um we basically decided we had to break my dad out of hospital which i know sounds dramatic but it was like a jail break because we were watching him decline so rapidly they're in an alien environment there's different noises going on and he was just getting more and more confused to the point where he came

across a senile and he wasn't my dad isn't like that my dad's so sharp so funny so with it so i had to almost tell nurses and doctors by the way he's not normally like this i know he looks old but he isn't senile so we got him out of hospital probably earlier than he should have done which meant that we were then offered um district nurses that come out um and visit now the only issue with that and again you're so grateful of any help you can get and this is no um knock against the nhs or the the incredible work these people do but just the way the system is set up it's so so backwards and so wrong that every time the nurse came it was just the wrong time wrong time of day to wake him up by the time they turned up he'd already got out of bed and dressed because he couldn't wait any longer and trying to put him

to bed way too early and so sadly despite everyone being so grateful for the help my mum ended up saying I don't want this anymore because it just was making things worse you see we have exactly the same thing with my dad so dad's got carers three times a day which is funded in part by the state in part by him he's he's a vicar who doesn't have a lot of money so he had to have a financial assessment to see what he was entitled to but we've got exactly the same problem and the carers do as best they can so i hear you you know don't knock anything but clearly our social care system our health care systems are both fucked yes yes frankly yeah and dad gets his carers that come in they come in at quite sort of

random times it's never quite the right time no it never is and he gets given his sleeping pill at five in the afternoon yeah that's ridiculous come on so then he's knackered and asleep by about sort of six seven o'clock and then of course he's falling a lot in the night and then he ends up in hospital bed blocking so my frustration with all this whole thing is there's got to be a better way of doing this care both with health care and social care so that people with dementia and their families don't end up in hospital where they're not needed where they're not needed where they're using up beds and where actually people rapidly decline because it's just not the right environment for that kind of, well, for loads of different diseases and illnesses. I do find that being cooped up in a bed with the, you know, the heating's full on in those places and it's a strange environment. It definitely sends them worse.

So I agree. My mum actually said from now on, it would be last resort to take him back into hospital because she could not go through that again. I think that sort of put her off. I think she doesn't really know what else she can do. And she doesn't, I think she's just so overwhelmed by everything that she is just coping alone.

So Sian, you had your little girl Ruby earlier this year. It's amazing. what's it been like for you as a new parent and having a newborn dealing with your parent and seeing them fade away how difficult has that been for you yeah I suppose there's a lot on your mind isn't there because suddenly now you're the parent and you think god if something like this happened to me I can't now look after her so it's made me see things from a different point of view definitely and then there's the guilt that I'm now so busy because I've had to go back to work that's life that's modern parenting I'm back at work my other half has taken

my maternity leave essentially to carry on look after after our daughter um but it does mean that i'm not able to go back and see my dad as much and um and my dad's every single time i talk about my baby he says he that's a weird thing that he's got he never forgot that i was pregnant which is so weird he never had to be reminded about that and he's never forgotten that i've had a baby but for some reason he's convinced it's a boy every time but that's you know my sister's got a little boy that it's going to be confusing I think for him but yeah it's definitely it's made me more emotional I think I was gonna say it must really mess with your emotions in terms of you know I'm dealing with my daddy who's who's getting really sick but now I'm I'm a mum yeah um so tell me how it's how it's made you more emotional I think it just does because I can't explain that I've just been put in such a different headspace now I'm a

parent and it's almost like I couldn't ever see that perspective before and so now I feel this real weight of responsibility for this human that relies on me and with my dad having something like this happen to him and in a weird way for an older man he was very fit and healthy and um sort of you know very with it and so it it did seem to take us by surprise that of every member of my family it's my dad that's ended up with this we didn't really see that coming so it does scare you makes you feel like things are fragile and you don't know what's around the corner and it does make me debate do i do i test to see if this is something that could happen to me or do i want to know i know it's different when it's vascular dementia compared to some of the dementias but it just gets you thinking about alzheimer's and illness and everything i've got to ask you as

well we touched on this when we were chatting um earlier just having a coffee. I mean, I'm terrified for my dad about end stage dementia. It is just so gruesome having done the film that I've just done. How do you feel about that for your dad? That is the one thing

that even now almost gives me the shivers thinking. It's the one bit that chokes you up because you think I cannot bear. I'm almost in denial about that stage because I'm clinging on to the fact that my dad at the minute just seems forgetful some days are worse than others don't get me wrong and some days it's almost unbearable repetition with him it is mainly memory um rather than behavior as such but the thought of him just not knowing who we are and for my poor mom you know she's terrified that he'll wake up one day and not and he's had moments where he hasn't known who she was and he's thought that she was her mom he's recognized you know he's

he's probably woke up in 1970 something i'm know what i'm saying so for my dad sometimes i think he wakes up and thinks of my mum looks a certain way and sees a totally different woman and thinks it's her own mum or something like that so i feel for my mum she's had moments of that that i've not witnessed personally um and it scared her but then weirdly it's not happened you know he peaks and troughs so um the thought of that stage if i'm being honest i would i would rather he died before that and it's a weird feeling but me and my sister have spoke about how at one point when he was really bad and we thought he actually might never walk again at one point he was he got ill which then combined with everything else is just horrendous and we we almost were

wishing that he just died because you want the most respectful peaceful way for someone to go dignified dignified yes and it just seems so cruel that if you can't cure these things there's not even a dignified way to go you just have to let this thing do its thing and you don't know how many years that is going to be for that is what's so cruel you might watch the person you know and love be torn away from you in plain sight in front of you but their shell their body is still representing them so you never get to grieve because you keep getting reminded of who they were. And that to me is what makes it so horrible that, you know, you wouldn't wish anyone to go through. And yeah, like you're saying, the thought of that end stage,

I don't know about you, I just can't bear to think about it. Well, the important thing to say is that people wrongly assume that this is an old people's disease. The symptoms and the issues start at least 20 to 30 years before, i.e. middle age. But also there are plenty of young people that are affected by this, which is why it's such a privilege to have Jordan with us today. Jordan, it was so amazing to film with you and Agnes

for our film for Channel 4 and to hear your family story. Now, for those listeners who don't know it and don't know you um you lost your mum at a really young age so can you just fill us in with what happened yeah so uh when i was 15 so this dates back to 2010 mum was formally diagnosed at the age of 47 with a rare type of uh familial early onset frontotemporal dementia um and i say it's familial because this is something that has completely devastated our family so uh mom was one of 13 cousins and out of those 13 cousins eight of them have lived with the same frontotemporal dementia and all lost their lives to it um out of their parents there

was six six grandparents to me four of them lived with and lost their lives to dementia so this has completely devastated my family and obviously after mum, obviously found out that mum was diagnosed with dementia, FTD in 2010 we then cared for her in the family home over the next six years. And how old were you, Jordan, when you started caring for mum? So I was 15. My younger brother was only nine. And my older sister was 17.

So you were 15, your sister 17, your younger brother was nine. And you did a lot of that care at home. And I remember just interviewing you for the film that you were saying you'd come back from school and then you'd take over the care of mum so what did that look like? Yeah so for me in those it was the last year of high school I kind of resented being at school because what was happening at home and dad had had to give up a lot of work and like you mentioned before he was having to take up a lot of work and like uh you mentioned before he was having to take up a lot of the the jobs that mom would typically do so going to work coming home cooking dinner which was not my dad's forte by any means you know learning to cook we most nights would have the

same stir fry or uh something that he quickly took in the pan or whatever um and it was kind of trying to take some of those jobs off my dad so he could care for mom in the best possible way um and that continued for me into early adulthood so going to leaving school and going to college um i was only at college three days a week so again when dad was at work trying to pay you know make sure bills were paid and keep a roof over our heads um i used to have to be mom's main carer so in the early days it started when mum kind of didn't no longer recognize who we were and there was some confusion around why she'd no longer able to drive her car which was kind of a massive freedom for her because she loved to get about and see friends and

do her daily shop and chat to all the mums on the school playground that sort of thing she didn't understand why that that privilege had been taken away from her or understand that she she was living with FTD um so it was stopping her from climbing out of doors and windows uh in in those teenage years uh and hurting herself by going and driving when she shouldn't be uh until it deteriorated over that six year period towards the last uh 12 18 months where she couldn't walk talk talk, do anything for herself. So I used to have to carry her to the toilet. Obviously, at that stage, she was incontinent.

So if she'd done an accident, I'd have to, you know, wipe my mum's bum at the age of, you know, 17, 18 years of age. It's just something that you just never think you should have to do as a child or a teenager for your parent. But obviously obviously there was never gonna it was never gonna be any other choice because I obviously was so I love my mom so dearly that I was always going to make sure that we cared for her in the best possible way I mean the thing is Jordan there's no other way of saying it other than that is deeply traumatic for you for you and your siblings and for your dad that's traumatizing oh most

definitely and that trauma those scars of having to do those things for mom and you know watching her being fed for a tube um getting septicemia because of uh the bed sore she had because she was just lying in the bed 24 hours a day um those are things that you can never ever forget um and it was so so very cruel and that's why i always say it's so so difficult um to explain to people what you go through as a family living with the later stages in particular of dementia uh and and that trauma has manifested itself in different ways for for me and my siblings and my dad you know for me it's it's depression or long periods of low mood and I'm able to or I've been able to develop fortunately coping mechanisms by having these outlets where I can do these crazy running challenges and bang the drum for a cure

and try and improve the services that we all know who have experienced the heartbreak dementia are lacking you know and going back to, I think there's a massive issue with a bit of a postcode lottery to the access you have to services depending on where you live. Absolutely. I mean, Jordan, did you get any help and support? We are actually very fortunate growing up in the Midlands. We have access to very good services. So the Queen Elizabeth Hospital, for instance,

we have access to very good services so the Queen Elizabeth Hospital for instance offered us the option to have genetic testing for a start which is absolutely amazing But that must have been a massive decision for them to offer you

genetic testing for this rare gene for FTD tell us about that did you jump at the chance or did you just think I'm not sure about this because that that's really scary yeah definitely and it's definitely not something that initially I wanted to do I think really I have to give credit to my to my sister she was a true trail trailblazer in terms of wanting to know she She looks so like my mum in so many ways and shares so many of her characteristics.

I think having gone through that and watched her mum go through it, she always just thought in her own head that she was a carrier and that was going to happen to her. And growing up in such a tight-knit family, we've all grown up with, you know, wanting to be parents

and have a family of our own. And Kennedy being obviously the oldest sibling, had her eyes set on creating a family with her partner she'd been with for a number of years and in order to do that she wanted to make sure that carrying the gene if she did have it she didn't want to pass it on any further so she went ahead with that genetic testing as i say at the qe and and from there seeing my sister get the positive result the first bit of good news we'd had for for a number of years definitely inspired me to change my mind after losing mum in 2016. I kind of lived a life of bliss ignorance, really, not really wanting to know,

putting that in a box, kind of just dealing with the grief of mum's passing rather than thinking about that it could be something that I could have to live with too. So, yeah, the real change was when Kennedy got the positive result and it almost gave me that glimmer of hope to think, oh, that could be my future. So just to jump in, when you say positive result, you mean Kennedy didn't have the gene? Yeah, so Kennedy is not a carrier of the 40 MAPT gene,

which gives us frontotemporal dementia in our 40s. But then for you and your brother, you weren't so lucky. So fill us in with that because you decided you had that glimmer of hope that Kennedy's clear, so we're going to go for it. So what happened? Yeah, so Kennedy got her result in spring 2019. As I say, that sparked the decision for me to want to know as well um as you know that kind of cloud of uncertainty of not knowing became too much of an issue in my

life you know my life was kind of spiraling out of control even after going through so much grief that that thinking about that could be possibly something that could happen to me was just I thought it would be better to know even if I was a carrier so I decided to go through with the process and on the 12th of September 2018 my genetic counselor delivered the worst news I guess anybody could deliver to you that I'm a carrier of the the 40 gene which causes the FTD and I can expect to get dementia in my 40s um is it that blunt did they literally say to you that it is when you're 40 so going off family family history, obviously, with how prevalent it is in my family, I mean, my mum was formally diagnosed at the age of 47. Most of her relatives who have also lived with it have been diagnosed in their mid-40s.

So more than likely, by the time I'm 44, 45, I'm going to start to show symptoms of front of temple dementia. And you're 29, aren't you, Jordan? I am, yeah yeah so 15 me and my brother could quote ourselves of having 15 healthy summers if if we don't fund the cure if we don't find the cure hence why we're we're literally throwing our lives at this you know in terms of raising awareness and trying to do everything we can to make sure that people families like ours don't have to go through the heartbreak that we've endured. That is just utterly devastating to have received that news

that you are the carrier, and then your brother got the news as well. Yeah, I think for me that was even more of a kick in the bollocks. Why was that worse for you to hear about your brother than it was to hear about it for yourself? We've just got this unbreakable bond as three siblings. When you go through something like that, when you watch the person who brought you into the world

slowly be stripped of everything that makes them who they are, that either drives you away from each other or brings you incredibly close. Fortunately for us, we're a very well-grounded family you know we've my mom showed us exactly what what love is and uh we managed to stick together through it all and it's created this unique bond that we'd do anything for each other um so you know kian being so young when mom was diagnosed as well at the age of nine you know how are you meant to process at the age of nine when your dad pulls you in to the front room and tells you that your mom is dying and she's going to have six to ten years to live?

And then at the age of nine, he never really knew his mom. He never got to know her for who she was. This amazing, incredible person. So all he's really grown up to know is this lady who brought him into the world was ill. And watch all the heartbreaking side of it unfold. So then to have to deal with all that, with the developing brain and all the trauma and consequences that brings later in life,

to then have the bravery that they did to go through with the genetic testing, coming out the other side of university and being a fully qualified physiotherapist, which he's extremely dedicated to, and us being so proud. You know, all we wanted for him, particularly for me, you know, as an older brother, was for him to get the all clear and be able to live, you know, a really positive, long life, healthy life.

And to hear that news that he was also a carrier was really gut-wrenching for me. And how has it been with the three of you, with the fact that Kennedy is clear? How's that been for her? Obviously, I can't speak for Kennedy truly, but I know that if it was me, there will always be some survivor's guilt there almost because it went from being,

I think Kian probably shared a little bit of comfort at the fact that either way either side of the result he was going to have one sibling that he was going to be joining but the other one was always going to be left behind so that's something that we're very aware of you know all these uh opportunities that we've kind of created for ourselves via banging the drum for a cure and things like that and for raising awareness we do try and make it aware that it's not just you know the FTD brothers as we called ourselves me and Kian there is another sibling there that Kennedy who's often forgotten about and she she's just as big and an important part of of our story and everything we've been through and she's she's been

so so amazing you know she was almost like a second mom to me and Kian with everything we were going through with her being two years older than me so um yeah that i know it's been incredibly difficult for her to to know that ultimately her two siblings she's gonna have to one day if we don't find the cure she's gonna have to relive what happened to her mom through her two through her two brothers well let's talk about that potential cure and what's coming down the line, Jordan, because I know that you and your brother, you are the FTD brothers and you are raising such a huge amount of money and you are banging the drum in terms of raising awareness. Tell us about the challenges that you guys have set yourselves and how much money you've raised. and how much money you've raised? Sure, yeah.

So following my genetic counsellor giving me my result in 2018, the first question I asked her was, what can I do to impact the world in terms of making a difference for dementia? So she encouraged me to get involved in a research study, which I am involved in still now. So that's the one that was obviously filmed on the documentary involving the Genphy study down in the University College of London with Professor John Rower.

So we're actively involved in research, but also whilst being involved in that research, we want to become a force to be reckoned with in terms of funding it. So since 2018, I've taken on various running challenges, starting with just running marathons. So I've ran three London marathons now. I love the fact he's going, just running marathons. Yeah I've ran three London marathons now. I love the fact he's going, just running marathons. Yeah, casual.

Just casual, running a marathon. And that's how it started, yeah. So I've been lucky enough to run the London Marathon on three occasions, as I said. And the second one was part of the Seven Marathons in Seven Days Challenge, where I ran a marathon around my hometown in Redditch. And then I ran the Grand Union Canal from Birmingham

to London and then finished with the London Marathon on the Sunday. You are amazing. It's incredible isn't it and you've just completed going the length of the country haven't you? Was it Land's End to John O'Groats with your brother? We did the other way around so John O'Groats to Land's End but I mean it been a very, very busy year. Kian ran his first London Marathon this year in April. In July, three weeks before I got married, I ran 100 miles in 24 hours around my local park where my mum's got a memorial bench. And we passed the bench 74 times and we completed the 100 miles in 24 hours and 27 minutes, which was incredibly difficult.

I can't even get my head around that. And how much have you raised so far? So to date, since my diagnosis, we've raised over a quarter of a million pounds towards a cure for Alzheimer's and dementia. And are you confident, Jordan, that there is going to be some kind of a cure or some kind of medication that might delay the onset of this

for you how hopeful are you i'm hopeful that there there's no doubt having uh the conversations that i have with the likes of professionals who are working so hard in research like professor john rower that there are treatments on their way i think the more concerning part of that is that there are going to be treatments readily available, but our NHS isn't in a position to be able to provide them to the people that need them. People aren't going to be able to get the access because the NHS cannot fund those treatments. It's not in a place to give the access to the people that need them, those drugs or treatments, which is really concerning for me.

So that then takes me back to my original point really with Sian because we're all in this together. Dementia affects the whole of society. Does it not make you angry or impelled to sort of lobby the government and say this needs to be a priority? We need to be funding more research. We need to be getting the NHS into a better state. We need social care to be in a better state

because this affects everybody and it's on the increase. I mean, it blows my mind. It's now Britain's biggest killer. I don't understand what other information people need or the government need to start eradicating this. Our NHS is already in turmoil and surely the best way to free up beds, like you said, and make it back to where it used to be in terms of a service.

And I'm not I'm not criticising the people who work in it. You know, Kian's worked with the NHS and there's so many amazing people who work within it. And the services they provide are absolutely fabulous as we've we've experienced ourself as a family. But in terms of, you know, providing families with a glimmer of hope in terms of giving them the treatments they need in the future, I think we're just not in a position to be able to provide that access to those treatments as and when they become available because I know for a fact that they are going to become available.

To say categorically there's going to be a cure in my lifetime I think would be a bit of a stretch because the research they're having to do is so complex but there's no doubt that there will be you know the condition modifying you know disease modifying drugs available over the next 10 15 years that could slow down or prevent symptoms uh becoming onset at an earlier stage but we're not in a position for for people to get access to them or people might not be financially in a position to access them which is just even more cruel in a sense which is disgraceful

and can i ask the pair of you um when you talk about dementia to people i found that people fall into two categories there are the people that have got experience of it and they absolutely understand what you're talking about and there's a real simpatico there isn't there and then there's the people that sort of go oh yeah no no my gran had that and yeah is it a big deal um how do you find it when you're talking about dementia to people do people get it for me i totally agree it's either two different camps there's's definitely confusion though, always with both. Because even when you are dealing with it like we are, there's still things that I was asking you

before we went on. I said, I don't know that. You know, there's still so much confusion about what actually is it. And this whole thing of what's Alzheimer's, which bit is dementia? What is the two? Which one starts and which one?

You know, it's weirdly confusing. I don't know why it's become so confusing when there is so many people affected by it um something that i would like to get across just while we're talking about it is for people not to be scared of it because i think because it's our dads we're really close to it and connected to it when it is granddads and you're one step removed there's a bit like oh i don't want to go and visit him because it confuses him or i spoke to a girl the other day who said she was telling me about it and it's opened up a lot of conversations with people that I never thought in a million years would have some

connection to dementia and more more people that I chat to end up doing and she said to me I've just had a baby and I don't want to take the baby to see my granddad because he won't understand who I am so then won't know who she is and I went oh just go go and see him go and make his day even if he calls you Kate and he names Jane just be that person that he will know no matter what that someone came to visit him that day and whatever he makes of that moment it will have added some joy and some spice to that afternoon and so my message has been to people whatever stage they're at is to really just embrace while we're searching and Jordan you're doing amazing things can I just say like thank you so much for all the stuff you're doing to help progress it but while we're

in the moment of living with it and for the people who can't be cured at this stage I think we have to embrace it and sort of go that they've changed they're not the same person they were but if if we can wherever we can i think we've got to try and support them as much as we can still go and see them still go and have conversation with them and with my dad it was still treat him like a dad and ask his help um for anybody listening that doesn't know a great deal about dementia here are some facts um it's Britain's biggest killer. There are around a million families at the moment dealing with this in the UK. It's set to rise by 40%. We know that it costs the economy 42 billion pounds a year, which is set to rise to £90 billion a year by 2040. So this is a problem that affects the whole of society. It is a healthcare problem, it's a social care problem,

it's an economic problem, and it's coming down the road for all of us. One in three people born today will go on to develop it. So you're absolutely right. Why this isn't a priority utterly staggers me there's over a hundred different types of dementia some are genetic and others are lifestyle related so it's really important to say that some of these are preventable and that we need to start getting ourselves educated about what it means and how you can look after yourself

so that you don't end up at end stage dementia later on in your life in the way that we've so tragically seen. But let's just take a quick break here. Don't go anywhere because we have lots more to chat about with Sian and Jordan. with Sean and Jordan. Many Canadians are finding it hard to focus with mortgage payments on their minds. If you're struggling with your payments, speak to your bank. The earlier they understand your situation, the more options and relief measures could be available to you. Learn more at Canada.ca slash it pays to know. A message from the Government of Canada.

From Searchlight Pictures comes A Real Pain, one of the most moving and funny films of the year. Written and directed by Oscar-nominated Jesse Eisenberg and starring Eisenberg and Emmy Award winner Kieran Culkin, A Real Pain is a comedy about mismatched cousins who reunite for a tour through Poland to honor their beloved grandmother. The adventure takes a turn when the pair's old tensions resurface against the backdrop of their family history. A Real Pain was one of the buzziest titles at Sundance Film Festival this year, garnering rave reviews and acclaim from both critics and audiences alike. See A Real Pain only in theaters November 15th.

Welcome back to It Can't Just Be Me, and I'm here with sean welby and jordan adams and you know i would love to hear from both of you about what your biggest learns have been on your dementia journey i know that it's very different for everybody but jordan if i start with you what what have your biggest sort of takeouts or learns been from your experience? I think having watched my mum live with FTD and I think those later stages stick with you so much and it being so complex as as a disease FTD itself I that's all right for a while that I thought dementia was and having met other people with different types of dementia it actually enlightened me um to knowing that you can live well with a

dementia diagnosis I'm not saying that there doesn't become a period of time where you know that changes because I think it does but I do also think but but I do think that you know I've got a friend called Sue Strawn um from Herefordshire who got me actively involved in raising money for charity and awareness. And she's in her late 60s and lives with vascular dementia. So obviously it's a step progression. But if she was here now, she's so articulate, she's so witty, you wouldn't necessarily realise that she's even living with dementia. And that was a massive eye opener to me i i was quite blown away by it um and i've been quite blown away by lots of different

people who are actually living with dementia showing that they can still live well for a period of time with that and i think that's important not to forget because going back to what sean said about people being so scared of dementia is, is impactful, but we also, I don't want people to be scared once they get a diagnosis, you know, you know, for as long as possible, we should let people live the best possible life they can,

the best quality of life. And I think society needs to change with our attitudes towards people living with the dementia as well. You know, I know there's some work going on here in Manchester at the moment to do with the B network about training their members of staff to be more dementia friendly, you know, so they have a better understanding of seeing people who are vulnerable and may be confused on public transport. And I think that's all part of it.

You know, that's a massive learning curve that we all as a society need to become more dementia friendly. I couldn't agree with you more. And how about you, Sian? What have your learns been from your journey with your dad? Yeah, I mean, exactly what both of you have been saying, not only in the documentary, but Jordan, what you just said there. I think it's one of those things where we've talked about the scary and the terrifying stages of dementia.

However, for now, if you are living in the moment, whether it's your dad, your granddad, your wife, your partner, you know, we are seeing it in younger and younger people. And I think it's just a case of don't dwell on who they were. Be in the moment. Embrace who they are now. Be patient. I don't tend to correct my dad. I let him tell me story. I'll maybe only correct him if he goes round and round and round on the same topic i might say oh yeah dad you did actually say that but i try and just be a bit a bit more patient with him um try depending on the type of dementia but i can speak on behalf of vascular dementia just small things like giving my dad some cues so he doesn't have to i think there's a lot

of pride involved with asking questions again or being in a room and being confused and I've learned the way I try to understand it with my dad was it's like waking up every morning with no context so he didn't even know what year it was let alone what day it was so just simple things like buying him a clock that had the date the month the time the year on it and put those in in every room to give those people context because you will think, I mean, we laughed. We laughed as a family about it. It was Christmas Day.

There was a Christmas tree in the corner. My dad's unwrapping Christmas presents and he had no idea it was Christmas. Really? Because the clues aren't always as obvious as we all think. Whereas the second we put this thing up with the date and time,

not only does he recognize his own birthday now and he knows how old he is, so then he can put the context of what year he's in and that has massively helped us so those little cues of giving people context and then like we've all been saying don't be scared to embrace somebody that has dementia or alzheimer's and and just help them as much as you can but let them get involved let them be part of the conversation and in the case of my dad i just started treating him like a dad again and if i invented problems to start a conversation that's what i would do our dad my um you know i need i need some help fixing this hoover can you help me because he's a practical man so the second it involved screwdrivers the muscle memory came back and he was able to do it so and

i spoke to somebody once whose mum was a cleaner and he and he said to me we tried all these different things coloring books and choirs and the stuff that you are probably told about sometimes when it comes to dementia but what triggered her was actually getting her to clean and she went straight back to her old self and started he got her back and sometimes as well when they're in that subconscious moment of cleaning or mending that's when i had the best conversations with my dad because i got him back in those moments that's i mean it's absolutely about finding connection isn't it meaningful connection with that person as best you can and i mean for me i think my greatest learn from doing the film and trying to help my

dad and care for my dad is get educated get educated about what dementia means it's end stage brain disease understand that we need to have a national conversation about this and yeah just understand the fact that it's Britain's biggest killer and we all need to be lobbying our local MP to make it a priority that's been that's been my greatest learn um that's it for today thank you to both of you Jordan thank you so much it's been such a pleasure to see you again and I'm so proud of all the work that you do in terms of raising awareness and all the money that you raise you really are you're a trailblazer and honestly it's a privilege to have worked with you so thank you very much indeed and Sian likewise it's so lovely to have you in

the studio I know how busy you both are so thank you very much indeed thank you so much for having this conversation it's been amazing well let's keep it going. Thank you, guys. Thank you. That's it for today, but I'll be back next week with a brand new episode of It Can't Just Be Me. But in the meantime, I also want to hear from you, because very soon we'll be releasing extra episodes every week where I'll be joined by experts and answering your dilemmas. So please, if there's something you want to talk about, whether it's big or small, funny or serious, get in touch with us. You can email us or send a voice note to hello

at itcan'tjustbeme.co.uk. And if you want to see more of the show, remember you can find us on Instagram, TikTok and Facebook. Just search for It Can't Just Be Me, because whatever you're dealing. Whoa, whoa, whoa. What are you doing? That's salt, not sugar. Let's get you another coffee. Feeling distracted? You're not alone. Many Canadians are finding it hard to focus with mortgage payments on their minds. If you're struggling with your payments, speak to your bank. The earlier they understand your situation, the more options and relief measures could be available to you.

Learn more at Canada.ca slash it pays to know. A message from the Government of Canada. From Searchlight Pictures comes A Real Pain, one of the most moving and funny films of the year. Written and directed by Oscar-nominated Jesse Eisenberg and starring Eisenberg and Emmy Award winner Kieran Culkin, A Real Pain is a comedy about mismatched cousins who reunite for a tour through Poland to honor their beloved grandmother.

The adventure takes a turn when the pair's old tensions resurface against the backdrop of their family history. A Real Pain was one of the buzziest titles at Sundance Film Festival this year, garnering rave reviews and acclaim from both critics and audiences alike. See A Real Pain only in theaters November 15th.