Podcast – Navigating the Challenges of Young Carers in Dementia

Voice Over:

The Dementia Researcher Podcast; talking careers, research, conference highlights, and so much more.

Dr Anna Volkmer:

Hello and welcome to the Dementia Researcher Podcast. In this episode, we're exploring the experiences of young carers in families affected by dementia; the challenges they face, the support they receive, and what more could and should be done.

I'm Anna Volkmer, an associate professor at UCL and a speech and language therapist at the National Hospital, and I'm delighted to be hosting today's show.

Now, behind every diagnosis of dementia is a family, and sometimes that includes children and teenagers taking on caring roles. Today we want to explore what that means, why research in this area is so important, and how services can provide better support.

I'm joined by three guests who bring unique perspectives:

Dr Patricia Masterson Algar, a lecturer at Bangor University whose work focuses on rehabilitation and social care and dementia, and who has just been awarded a new Health and Care Research Wales grant to look at supporting young carers.

Hello Patricia, and congratulations.

Dr Patricia Masterson Algar:

Hello.

Dr Anna Volkmer:

Now we also have with us Hannah, Consultant Admiral Nurse for Children and Young People, who has worked extensively with families and carers and is a co-investigator on the new research bid, and whom I've had the pleasure of working with.

Hello Hannah. Hello again.

Hannah Gardner:

Hello again. Yeah, lovely to be here.

Dr Anna Volkmer:

Nice to see you.

And we also have Gareth and Euan Heslop. Now Gareth cared for his wife, diagnosed with young-onset dementia, until her recent passing. And with him is his son, Euan to share their experiences as a family. Thank you both so much for being with us.

Gareth Heslop:

No problem.

Dr Anna Volkmer:

Now to start us off, can I ask you each to introduce yourselves in your own words? Perhaps we could go around in the same order. Patricia, do you want to introduce yourself?

Dr Patricia Masterson Algar:

Yep. So, my name's Patricia, and as you said, I work in Bangor University as a researcher in healthcare. And for the last six or seven years I've been working with families affected by dementia, and more specifically with young people. And that came from speaking to participants and speaking to people that were in families affected by dementia and them telling me that the younger members in the family were a little bit neglected and left a little bit to deal with things on their own. So that's where I started sort of reaching out and trying to get this research developed so that we could improve that support.

Dr Anna Volkmer:

Thank you, Patricia. This sounds really important. I certainly know from my own clinical experience, 25 years working as a speech and language therapist, that there are huge gaps in the services we provide, so absolutely wonderful that you're doing this work.

Hannah, what about you? Do you want to tell us about yourself?

Hannah Gardner:

Yeah. So, my role is Consultant Admiral Nurse for Children and Young People. I've been in the role for about 18 months. And it's the only role nationally, internationally just for children living with families facing dementia. [inaudible 00:03:12] unique. It's about awareness, it's about supporting children, it's about research, and also being that ambassador for children as well, being that voice to enable them to be seen and heard. So, it's an incredible role. And I support the Admiral nurses up and down the country as well to actually educate them and support them in supporting families and thinking about younger people.

So, my background, I'm a general nurse. So, I've got about 20 years experience working as a nurse. I've worked in a community hospital, I've been a dementia lead in an NHS trust; I worked at Rare Dementia Support where I got valuable experience working with younger families, and I've worked in a hospice as well. So, lots of different general information I've learned and support that comes together with this unique exciting role.

Dr Anna Volkmer:

Thank you, Hannah.

And how about Gareth and Euan? Do you want to say a little bit about who you are?

Gareth Heslop:

Yeah. So, I'm Gareth. I work with AI within the financial services sector, but more importantly, I was Sarah's husband for about the last 20 years and cared for Sarah for the last four or five years. Got a couple of kids; Euan, who's with us, and Lewis, who's a bit older and lives in Glasgow.

Dr Anna Volkmer:

And how old are you, Euan?

Euan Heslop:

I'm 14, and I think I was around nine when my mum got diagnosed. So yeah.

Dr Anna Volkmer:

And how old was your older brother?

Euan Heslop:

So, Lewis is 23 now.

Dr Anna Volkmer:

Thank you.

I'm going to move on to discussing the personal stuff. We've already started on that, but when dementia enters a family, young people are often taking on roles they'd never expect. And I'd really like to hear about your experiences of that and what it can mean from day to day.

So, Gareth and Euan, could you tell us about your family's experience of dementia, and what role you took, Euan, as a young carer?

Gareth Heslop:

Yeah. I mean, I'll be happy to start.

Before Sarah got dementia, I had no experience of it within my wider family. Obviously, I'm aware of it, you're aware of particularly Alzheimer's disease. I wasn't aware of the numerous different variations of dementia. I guess with Sarah, you wouldn't expect it to happen this age.

Initially when Sarah, she was diagnosed with stress and anxiety through work, she was signed off through work, but there's more and more instances of trivial things that happened that were concerning. Actually, went to the GP with Sarah, and as you're aware, there's a rather basic test they do. Sarah actually passed that test, but from what I learned, understood, the test is more aimed at people with Alzheimer's and memory issues. Sarah had frontotemporal dementia, which was obviously more around the social and processing skills.

So, my experience was really through that. And I think it was probably around about 2021 when I wrote a letter to her GP, you know, just there's more and more concerns of things that were happening. She was forgetting to put stuff in Euan's packed lunchbox, for example.

And I always remember one incident when she was driving the car and we were going into the countryside, and she didn't know to put the full beams on, and I was trying to explain to her. I couldn't really get it across to her, so I told her just to pull across and put the brakes on and stop so I could show her where it was. And she slowed right down for about five or 10 miles an hour, but she just didn't fully stop. And actually, my eldest child, who was in the passenger seat, had to physically put his hand on the brake.

So, there were signs, you know, there was early signs, and we got some investigations, and I think it took another year before she was accurately diagnosed. So yeah, that was my experience. Earlier on anyway.

Dr Anna Volkmer:

Thank you for sharing that.

Euan, did you want to say anything about your role as a young carer at this point?

Euan Heslop:

I mean, I always felt like I had to protect her kind of. Like when we went around town and stuff like that, she was a bit like ... Near the end, she couldn't walk as fast as us, I guess. I always stayed behind to walk with her, or I helped her walk a bit faster. And yeah, I mean, sometimes I'd have to help her around the house.

Dr Anna Volkmer:

How so?

Euan Heslop:

Like we've got a dog, and so she always tried to help the dog but in some ways she couldn't. So, I had to help the dog and ... Yeah.

Gareth Heslop:

And I think just to add to that, there's two or three instances for Euan before she was diagnosed, which obviously now we're aware that's what it was. But I always remember going to her office party at Christmas, and I think there was a really stressful situation for Euan where he was trying to look after our dog, but she was trying to ... You know, she didn't understand that's what he was trying to do, and she got a bit upset and angry with you, didn't she? And I think Euan found that quite difficult.

There was a lot of instances like that. And then when we seemed to have a really strong idea that it was dementia before we got the formal diagnosis, I sat down with both Lewis and Euan just to sort of explain, "This is where we think things are heading." Because they'd already started noticing things. You know, Lewis always remembers getting a text from his mum, and it was just checking up on something that wasn't relevant basically.

So, I think you both found that difficult, didn't you? All the things that were happening that didn't really make sense.

Dr Anna Volkmer:

Yeah. Yeah, of course. I think that's a really powerful point, that things just didn't make sense. I can imagine that.

Patricia and Hannah, from your professional perspectives, what do we know about the experiences of young carers in dementia?

I don't know who wants to start. Hannah maybe?

Hannah Gardner:

I suppose the experience, it's overwhelming, isn't it when you have a family member with dementia? But when you're a child and you're growing up, there's so many aspects of yourself, you're learning to learn yourself, your puberty, [inaudible 00:09:45] experiences and responsibilities, that it takes over your life.

And often understanding what's going on, often children find it difficult understanding the impact and knowing where to turn. And I think every family is different. Everyone copes different as well. You have two siblings, and one can cope very differently.

So, it can really have an impact on your day-to life in school for each child really.

Dr Anna Volkmer:

Yeah, that makes sense.

And what about stigma or kind of lack of awareness and support? How does that affect people?

Maybe Patricia, you can speak to that.

Dr Patricia Masterson Algar:

Well, I don't think it takes a genius to realise that stigma would be a big issue here. And the kids that I've spoken to in the families that I've been involved with, that stigma is what makes the young people, for example, not want to say anything to their friends or not want to be signalled out in school. So, they don't want anything different, they just want what everybody else has. So, the simplest things like having a sleepover or inviting your friends over, those things maybe stop because you're feeling a bit worried that maybe your mum or your dad are going to do something that might be a bit embarrassing or that the other kids are not used to.

So, I think it's that stigma that is leading all of that, is that sort of lack of awareness of other young people, teachers, society in general that just because your mum or your dad don't look necessarily ill, they have an illness. And having to convince a friend of yours that your mum or your dad is ill must be really, really hard. It's hard enough when that illness is visible, but when it's not visible it must be really difficult. So those are the conversations I've had sometimes with young people and with families.

So, I think definitely stigma and lack of understanding in general leads to people not knowing what to do, and then loneliness kicks in, I guess.

Dr Anna Volkmer:

Yeah, I can see that. Thank you.

And I guess we've been talking ... You know, this is very personal, but I wondered about the more ... If we looked to the wider picture in terms of what support, there is. We know there is some support for young carers, but it seems to be very, very patchy, and not always designed with dementia actually in mind at all, is it? And then dementia services aren't designed with young people in mind at all. So, I wonder if we could talk a little bit about what is currently available and really where the gaps are.

Hannah, what support is available for young carers right now?

Hannah Gardner:

It's a bit like dementia care. It's a bit ... Wherever you live, it's a bit patchy sometimes.

And I guess that young carer support within school, I know schools are trying to support young carers in that environment, and the pastoral support, that emotional support generally for a young carer, but I think the issue is identifying young carer as the word actually for children to access young carer support when you're a young dementia carer is very different to maybe someone else who's a carer for a relative with another condition or an older adult with dementia. It has that diverse needs. And I think the support, the understanding, it's about that individual child, the individual type of dementia, and how it's impacting the child and the services being available.

And we need so much more awareness of how dementia is impacting the child. You've got the pastoral support to go to, you've got counselling, there's children's counselling services that you can go to, but often it's that gap of actually understanding what it's like to have a parent with dementia. And the root of my role is about increasing awareness. So, I do offer clinical support, but there's only one of me. So, it's actually having that specialist support to [inaudible 00:13:37] the children to understand.

So, it's difficult. And it's not just in the school, it's in the groups as well: the scouts, girl guides; everyone understanding better to support children and enable them to have that childhood and be a child as well. So, we need so much more support generally for dementia. And when you're a child, like you say, it's different when you're growing up, but we do need more services to offer that emotional, practical ... And post bereavement support as well is equally important too.

Dr Anna Volkmer:

So practical as well. I can see that. I guess I've worked with some young people and teenagers, but I've had colleagues in the NHS who said, "Ooh, we're not allowed to work with the younger people. We shouldn't do that." And I've always found that quite surprising. But I guess not only is there a geographical perhaps variation, would you say, Hannah, but also kind of almost individual health professionals not being sure if they're allowed to do practical stuff. Is that fair?

Hannah Gardner:

Yeah. I think ... You know, I've been working with local Young Carer Support [inaudible 00:14:41] dementia strategies in the local county, and they want to support, but the funding's not there. There are not enough awareness generally about young carers, let alone young dementia carers. So actually, we are so behind generally for all carers.

But yeah, like you said, with referral criteria, people sometimes don't know what to say. Professionals are used to supporting older families. When you have a younger family, the needs are different, and people may not have those skills or confidence. So, it, yeah, can be a mixture of funding and support that's needed.

Dr Anna Volkmer:

I've had some really interesting conversations where actually ... Because I've worked a lot with younger people and teenagers doing work on communication skills and often found that younger people and teenagers get it really quickly. Because one of the teenagers I worked with said, "Well, I'm learning all the time. Of course I'm going to get it. Whereas adult, my dad is not learning at all, so it's much harder for him." And I was like, "That's actually a really good point."

But actually, often we can work ... It doesn't take heaps of resources to do something very practical with people.

Hannah Gardner:

Yeah. Yeah, I think children learn ... Kids learn quicker, isn't it? They just ... Well, yeah, their minds [inaudible 00:15:51] engaging and now they want to learn. But yeah, older adults, yeah, we don't pick up things as quickly. And kids adapt. They want to learn and absorb information too.

Dr Patricia Masterson Algar:

I think there is a tendency to underestimate how much a child can do and how much they can deal with and cope with and understand. And it has taken me ... Because I didn't have experience in this area, but it's taken me quite a while to realise that things that an adult might really find difficult to cope with, a young person sees it differently. You know, they have that survival instinct, they have that energy, they have that positive outlook. And I think sometimes because they're underestimated, things are not spoken clearly, and things are not ... So, everybody kind of goes around trying not to say the wrong thing, but what they would appreciate is the honesty and kind of being explained things [inaudible 00:16:52].

Hannah Gardner:

Mm-hmm.

Dr Patricia Masterson Algar:

And they can also defend themselves. I mean, many young people would say to me, "Well yes, if you say something that I find that is not right, then I'll tell you that that's not what it is like, because you don't know what it's like." And I'm like, "Yeah, absolutely. I don't know what it's like and I need you to tell me straight."

So, I think they appreciate that honesty and that straightforward sort of approach, but it is hard. I found it really hard at the beginning knowing what to say or how to say it. And I don't know whether Euan has found that, or Gareth.

Dr Anna Volkmer:

Yeah, Gareth and Euan, what do you think? What kind of support helped and what kind of support would you like to have had?

Euan Heslop:

Well, I had support from ... What helped me was my dad. I talk to my brother now and then, just like catching up. And then I had a wellbeing teacher at my school that we just, every one week or two weeks or something like that, we just went in a room. Sometimes we talked about mum, sometimes we just played [inaudible 00:18:00] or just ball games to make me feel better. I mean, I got a lot of support from school.

And then I got some support from my friends, but I guess I wouldn't expect a lot from them because they wouldn't understand what I was going through. But I mean, just like me, say, playing my PlayStation with my friends probably really helped me when my mum was ill, because I probably was in my room a lot just playing on my PlayStation.

And yeah. So, I think that's what really helped me go through that situation.

Dr Anna Volkmer:

Yeah.

Gareth Heslop:

I think just to add that, one of the things we did is we moved home actually a couple years into the diagnosis. And there's a couple of main reasons. One was to have more space to care for Sarah in case people need to stop over, but one of the other reasons was the house we moved into has got a basement room where Euan could just literally lock himself away, lock the door. And whenever he wanted that space away from it all, he could do that. Which meant, you know, going back to what you were saying before, Hannah, that he had a complete separate entrance as well so he could still have sleepovers and still have friends come over, which was kind of nice, wasn't it? Because you could just have your own space.

And Euan's obviously very [inaudible 00:19:27], but one of the lucky things we did have is somebody else at his school had gone through that previously five, six years before, and so the school were a lot more prepared and ready to know how to support him. And I guess one of the things both the school and I tried to do is ... Like you say, kids aren't stupid. Kids are aware things are happening. You can't shield them from things. There are ways to talk about it that's age appropriate, but you can't hide that. And we had those conversations and let Euan sort of guide us where he wanted.

Within Sheffield where we live, there is a Young Carers Association, and they have a group where kids in similar circumstances meet up. Euan didn't want to do that. Euan didn't, you know, as is not unusual, didn't want to stand out as it were. But one of the things they did offer instead was they offered a grant, and actually that means he could then go out and use some of that money to go to the cinema with his friends and just take himself away from it.

Because I think one of the things I remember Euan saying to me is his friends were very caring, nice, but obviously nobody knows ... Even close relatives don't know what it's like unless you live with that person day after day. And one of the things I said after Sarah passed was the support I got from the boys, just because 10 minutes I had to pop up to the shop and Euan would sit with Sarah. And obviously it was safe to do so, but it's still a lot of responsibility, isn't it?

And I think that's what Euan did. He tried to get the support that he wanted, not what people necessarily thought was best. It's got to be right for him, doesn't it?

Dr Anna Volkmer:

And did you move from primary to secondary school in that time?

Euan Heslop:

Yeah. I mean, I think it was near the end of year six, maybe like middle of year six, and then, yeah, I moved to secondary school.

Dr Anna Volkmer:

So, it was more secondary school who were involved really.

Euan Heslop:

Yeah.

Dr Anna Volkmer:

Yeah, that makes sense.

Gareth Heslop:

But yeah, I mean, we'd started noticing things whilst he was at junior school, so you were already getting a bit of support there. And actually, they were particularly good at making sure that his secondary school were informed of continuation. Because that's one of the problems, isn't it, is sometimes there's gaps and things don't get transferred or told about and ... Yeah, so it was transferred across, but I think it was really in the last year of your mum, wasn't it, where you got actually well-being support, which, you know, [inaudible 00:21:47].

They did lots of other things as well. Like he didn't have to do all his homework, for example. They were trying to encourage him to still come to class, but if he was finding it particularly tough, he-

Euan Heslop:

[inaudible 00:21:59].

Gareth Heslop:

... Was given a pass to walk out the class as well if he wanted to. And they sort of just took it on your pace, didn't they? I think.

Euan Heslop:

Yeah.

Dr Anna Volkmer:

Sounds pretty amazing. It sounds like they were sensitive to all types of your needs at every level, which sounds pretty amazing.

Gareth Heslop:

Yeah. And I was saying to someone earlier that that's why you have to be open, don't you? I mean, it's so tempting just to not tell people. And you're always worried if, you know, what happens if you tell school and then people get involved in the ... You know. But we told them pretty early on and we've ... I mean, I worked it out one time. There were over 100 professionals involved in Sarah's care, and they'd always be like ... They could clearly see that Sarah, but also the boys were being well looked after.

Because that's one of your worries. You think, "Well, are they going to try and do some intervention?" But it's like actually just be open and honest because people are realising things that's changing anyway, aren't they? You know, obviously Euan at school, he's going to start acting a bit differently and they'll notice things anyway.

So yeah, we were just open from the start, and it was actually better because we just got all the support we could get.

Dr Anna Volkmer:

And just one more question. So now, do you still get support, Euan? Because you must be, what, in year 10 now?

Euan Heslop:

[inaudible 00:23:17], yeah.

I don't get wellbeing support anymore. My wellbeing teacher said, "You can pop in if you want."

Dr Anna Volkmer:

That's good.

Euan Heslop:

I mean, I think I'm going to have a catch-up meeting one lesson, but ...

I mean, I don't really have a pass to go out anymore, but if I get like ... I mean, obviously I think if I get obviously really sad or something in lesson, they will let me out. So that's really good. I mean, and ...

Dr Anna Volkmer:

[inaudible 00:23:58] to hear that.

Euan Heslop:

Yeah.

Dr Anna Volkmer:

I'm glad to hear that because thinking about what Hannah was saying about things happen ... You know, you actually need ... We all need support afterwards, after we lose people as well, don't we? So, I'm glad to hear that that's continued.

Thank you so much for sharing all of that with us. I guess it might be useful finally to look to the future a bit in our conversation. And I think people will be wanting to know about research that can help us understand what families really need and how services might do better.

We've talked about how services are doing well, we've talked about the gaps, but Patricia and Hannah, you've just secured this new funding. Could you tell us a little bit more about what you'll be working on and how this might make a difference?

Maybe Patricia, you could tell us a bit more about that and what it aims to achieve, this research.

Dr Patricia Masterson Algar:

Yeah. So, it comes from a number of years working with families with a diagnosis of dementia. So, we've both ... Obviously Hannah has a lot of experience of working with these families, and I've done sort of the exploratory work to see, "What was it that was needed?" Because you don't want to go and start doing something if it's not what is needed. So, it took us a number of years to really see, "What is it that kids need and the families?"

And peer support, and I think we've spoken already about peer support without calling it a peer support; peer support is really, really something that everybody benefits. There's plenty of evidence, and it really isn't that complicated to understand that everybody benefits from talking to other people in the same circumstances. But sometimes that doesn't happen naturally if you don't meet anybody that is ... So, organising peer support for these young people seem like the best way forward. Because there isn't really any peer support for them. There are loads for older adults and there's loads for older carers, but there had never really been one specifically with young people.

So the funding, the aim of the funding is pretty simple, is to work with young people in a situation where they've been through having a parent or a close family member with dementia, work with them, work with the professionals that have experience, and between all of us create an online, it's called Peer Support Programme. It sounds extremely big words, but all it is, yes, a programme that anybody that works with young people can then deliver. So, nothing super complicated, nothing so complicated that it cannot be delivered easily without a lot of cost, but at the same time something that is targeting exactly the needs of young people.

So that's why we need to work with them, with their parents, guardians, and with professionals, so it comes from them. So they tell us what they would like to have in peer support, what things would they have liked to discuss, what activities, how to keep people engaged, how to support, but maybe making sure that we're not addressing things that maybe are too difficult for them to deal with; but as we said, they're pretty resilient. So yeah, developing a Peer Support Programme that is there for them.

And it's online because we did find that most of these young people are quite spread across the country, so online seemed the most feasible. Saying that, if organisations have a group of people that live nearby, then nothing stops from doing it face-to-face. But online seemed the most practical, sort of sustainable thing for the future. Because there is no money. Governments are not spending any more money, councils are really, really struggling. So, you don't want to do something that stays on a shelf. We want to do it, and we want it to be available. And that's why obviously Dementia UK are massively important because they are sort of the pathway to get this going.

Dr Anna Volkmer:

That makes sense.

Wouldn't it be amazing if you could weave it into a PlayStation game? That sounds like the ... Not so achievable. But Hannah, sorry, let's think about what's actually achievable. How do you think this research then might help feed into practise, research, policy, that kind of thing?

Hannah Gardner:

I think it's so important. It's got young people's voices. It's so important. The children that I support, I learn from them. I'm learning more from them than a book. And it's actually their voices, what they need. I often say I was a child a long time ago, so all this information involving children in this work and producing this Peer Support Programme, that we can use Dementia UK and add more nurses, actually embed it in practise.

And also with Dementia UK, our policy, and campaigns, we are part of the Young Care Alliance. So, it gives that depth and experience a package that we can actually use our platform as a dementia charity to actually say, "Look, children need more support," and to embed this into practise and to develop; it's the next step, isn't it? What could be next after that?

And I think it just shows that we're actually considering children. My role, being an ambassador, it's something that we can actually say, "This is what children want, this is what children really need." So, it has so many opportunities to make a difference to children. The isolation that children feel [inaudible 00:29:10], into practise and get their feedback is so vital.

And as Dementia UK grows, our strategy is growing, our Admiral nurses are growing, it's not just Admiral nurses, it's actually the networks within Admiral Nursing, within their local areas as well that can be used and [inaudible 00:29:28] that feedback. So, it is so, so needed for children to actually be part of dementia support alongside other peer support as well.

For all the family, siblings as well. In the families, we know it doesn't just affect the children. Sometimes it's the grandchildren. Aunts and uncles have [inaudible 00:29:47] on-set as well. So, it opens the door to so much, and it's amazing that it's actually been given the funding.

Dr Patricia Masterson Algar:

And I think one of the things that I'm hoping this research will also help, although we have already done quite good steps, is that you need to join the support for young carers to the support for people living with dementia and their families. It cannot just be two separate things. You have to join those things. You have to realise that they each have to communicate with each other. And hopefully if we create a Peer Support Programme that it's linking all of those aspects, the young care aspect, the dementia aspect, then it will help to just make it something that it's owned by many, that it just is useful to many and they can use it as and when they want to.

And then it doesn't rely on young people identifying as young carers or identifying as dementia carers. They're just young people that want to speak to other kids that are in the same situation to them. It's simple.

Dr Anna Volkmer:

I think that's a really beautiful way of describing it. It makes me think of actually dementia not happening to one person but happening to everybody in a family and around a person. We should be thinking of it much more like that.

I think often in the NHS, our services are structured just for the one person, but actually ... And I think some services have more flexibility to deliver services to other people in that family, but actually we need to think about the whole unit, don't we?

Dr Patricia Masterson Algar:

Yeah. And working with the family all together because there's no point in the research study. Our participants will be the young people and their parents or guardians or close family members. You can't really separate. If you separate those two things, something's not going to work. So, it'll just be together.

Gareth Heslop:

And if I could just add to that as well, I think it's a crucial point. If I think of the three or four organisations or people that made a massive difference, like my Admiral nurse, the social worker, our local council, the social worker actually at the hospitals, because Sarah was in hospice for the last five months; if I'm going to be honest, I think we got the support we did because they were looking at the whole family.

As we know, getting paid for care from the local council is quite difficult. But because I was still working, because I still had two kids at home, they saw that there was a need. And by the end, before Sarah went in the hospice, we were getting, I think 45 hours of paid care.

And luckily, I got some really good advice from a friend to separate our bank accounts. So, it was actually fully funded because they couldn't use my income.

Yeah, exactly.

But without that, you know ... I mean, obviously most of that was used to ... Well, all of it was used for care, but some of it actually they put five hours aside for respite. And so that was sometimes me and Euan could do something together.

And it was the same at the hospice. The hospice actually said, "Look, Sarah's getting good care. We would never ... " Because at one point they explored with me that Sarah needed to move into a care home, and said, "We would never put Sarah in a care home that wasn't suitable for her needs." But actually, the main reason we kept Sarah at the hospice for so long is actually for me and the boys. Because it's impossible, isn't it? I mean, I always say that we got as much support that there is out there, and yet it was still nearly impossible to care for Sarah. And that's why I always feel for the people that weren't as lucky as us.

But I would like to add as well, I think that whilst there is a patchwork of support of different things, what I really struggled with was getting dedicated support for Euan. You know, there was Young Carers, but obviously caring for somebody with dementia is completely different. Do you know what I mean?

Dr Anna Volkmer:

Right.

Gareth Heslop:

You'd find books, but dementia books for kids are all aimed at liking you've got a grandparent with dementia, not a parent. Do you know what I mean?

Dr Anna Volkmer:

Hmm.

Gareth Heslop:

And you get a rare one that is actually aimed with a parent, but it's not actually aimed at teenagers, which is completely different again. So, there's stuff out there, but it's just really difficult. It's not really always appropriate for somebody at this age.

Dr Anna Volkmer:

Not always tailored to-

Gareth Heslop:

Yeah, exactly.

Dr Anna Volkmer:

... [inaudible 00:33:59] need. Yeah. Yeah, that makes complete sense.

Dr Patricia Masterson Algar:

And I'll just say one more thing because another good thing; there's many good things about this study in my opinion, although I'm biassed; is that we are working ... So, during the whole writing the funding application, we're working with one young man who his mum was diagnosed with young onset dementia when he was ... I think he was 15. He's in his twenties now, but he's been supporting the funding application. And before that, I knew him from before. So, he's been giving his perspective as someone that has been through it. His mum is still doing well, but obviously her needs are increasing. So, he's helping us actively.

And then we also have a mum that worked with me in the previous study with two girls, two girls that were siblings obviously, and their dad had dementia and passed away during the study actually that we were doing.

And having those two people helping us figure out the practicalities and figure out those things; like Gareth was saying, it's about that type of support or this type of support, or, "That is what I needed at this moment and that is what I needed in that moment." Because obviously everything is changing all the time. So, it's not that you get something, "Oh, there we go. Read this," because every week could be different. So having them remind us of that very, very often, it made a massive difference of how we're thinking about how we're going to develop this-

Dr Anna Volkmer:

Hmm.

Dr Patricia Masterson Algar:

... So that it's dynamic and it's flexible and it moves with the needs that the young people have. Which again, I'm sure Gareth will say that from one day to the other, one day you think everything is under control and the next day nothing is under control. And then what do you do?

So, you don't want families to reach a crisis point. You want things to be in place so that the crisis ... You can never prepare anybody for all the crises, but you can do your best to try to anticipate maybe some things, and ... Yeah.

Dr Anna Volkmer:

Hmm.

Dr Patricia Masterson Algar:

So hopefully we're going at it from all directions, so we'll try to do our best.

Dr Anna Volkmer:

Yeah, I think that's really important to say about this idea of tailoring that Gareth really started talking about. Because tailoring isn't just about everyone having a different type of dementia and needing us to tailor to the person with dementia; we need to tailor to the young people who are perhaps themselves week on week changing. Because when you're in year six, you're a different person to when you're in year seven, and you're a different person; well, so my children tell me; you're a different person to when you're in year eight. So, I can see that young people are changing as well, and we need to tailor to that element.

And like you say, anticipate where possible. Often, I think, Patricia, what you're saying, and I think I've seen that in my clinical life, often the most powerful thing that I'm able to share with people is what I've learned from other people. And that's what Hannah said really, is often actually we ... Because there's so little research in this area. We're learning from the people we work with and paying it forward. But actually, bringing that learning together sounds like a wonderful study.

So, we're nearly out of time, but before we finish, could I ask each of you to therefore just share one short message or just a piece of advice for families, practitioners, or researchers listening to this episode?

Who would like to start? I don't know. Hannah, do you want to start?

Hannah Gardner:

Yeah. I'll go first.

I think to think of the children. The children have so much information about the person living with dementia, and often they don't seem heard or seen, and really have valuable information that they can share with health professionals to provide that person-centred care. And yeah, when the diagnosis is given, think of the whole family, including the children, is so important.

Dr Anna Volkmer:

Think broad. That's really helpful. Thank you.

How about you, Patricia?

Dr Patricia Masterson Algar:

Difficult.

Well, I'd say that for me it's about making sure that young people in that situation don't think that they're the only ones in that situation. It's about normalising things to a reasonable extent, but normalising the talk, normalising the words that are difficult to say. And I think if that happens more and more often, then those kids will feel less worried that they're the only person in this world going through the same thing. And hopefully the research that we're doing might be able to create a path for those conversations to happen and things to just be discussed clearly and openly, which can only be a good thing.

Dr Anna Volkmer:

Thank you.

How about you two, Gareth and Euan?

Gareth Heslop:

Yeah, so I think Hannah captured it. You know, treat it as a whole family. Because dementia is quite different, isn't it? It's a social condition more than a medical condition as such, and so the impact is on the whole family.

I think one other thing for me though is this can have a ... You know, if things aren't handled properly, if kids aren't given the right support, it can have a lifelong impact, can't it? And obviously it'll have an impact anyway because you're losing your mum or a parent or whoever, but actually, if you can get the right support in place, then they can come out the other side as best as possible, can't they? And they're not going to get that unless you consider them throughout the process for every aspect of it.

Euan Heslop:

I mean, I think from my experience as a young carer, sometimes I just didn't feel like I wanted to talk about it, and eventually that built up into stress or anger. I remember one day I just had a random anger outrage, and then I just ... Luckily, I had a punching bag for it, but yeah.

I think if you're a young carer, I think you ... Like when I found out I could talk, it really helped me through that situation, and it really helped me get less emotional and stuff like that. And then it really helped me build my way back up to how I used to be, I guess.

Dr Anna Volkmer:

As a speech therapist, I always think talking is like your superpower. So, I think that's amazing that you've found that you can talk, because that will be a lifelong superpower.

So, thank you all so much. Thank you to Patricia, Hannah, Gareth, and Euan for joining me today. And thank you to our listeners for listening.

As ever, you can find more information, links to resources and details of the new research on our website at dementiaresearcher.nihr.ac.uk. Do also check out our community app where we continue these conversations and share new events, blogs, and podcasts.

I've really enjoyed this conversation. Thank you so much for being so open and honest. I think this is a huge gap in the research work we do. I've just been recently talking to a teacher who works quite hard from the Department of Education whose husband has developed dementia, and she was saying exactly how little ... She was reflecting on her role as a teacher and saying how she wished there was more in education about dementia. So, I think you've inspired me to inspire her to do more about it on the other end as well.

But as ever, you can find more information about this work that we've talked about today and links to resources on our website, as I mentioned, at dementiaresearcher.nihr.ac.uk.

I'm Anna Volker and you've been listening to the Dementia Researcher Podcast. Thanks, and goodbye everybody.

Hannah Gardner:

Bye.

Voice Over:

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