Dementia with Paul Hoskins and Tim Wilkins, Alzheimer's Society Artwork

The Sunflower Conversations

Welcome to the Sunflower Conversations, the podcast where we explore the experiences of disabled people with non-visible disabilities through the lens of the Hidden Disabilities Sunflower.

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The Sunflower Conversations

Dementia with Paul Hoskins and Tim Wilkins, Alzheimer's Society

September 21, 2025 • Hidden Disabilities Sunflower

Tim Wilkins from the Alzheimer's Society and Paul Hoskins join us to discuss dementia.
The stigma and misconceptions around dementia often paint a bleak picture of life after diagnosis. Paul has a different story to tell as he is living with frontotemporal dementia and Alzheimer's.

"Some days can be very hard. Some days are a lot easier," Paul explains, offering a glimpse into the reality of living with dementia. Far from withdrawing from life, Paul has embraced new activities since his diagnosis – from cricket and bowling to tapestry clubs and community involvement. His story challenges the notion that a dementia diagnosis means the end of an active, engaged life.

Tim explained that dementia is not simply one condition, but rather an umbrella term for symptoms caused by different diseases that affect the brain—emphasising that "dementia is not a natural part of ageing" – a crucial misconception that needs addressing.

If you are experiencing any issues discussed in this podcast, please contact your healthcare practitioner.

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Hosted by Chantal Boyle, Hidden Disabilities Sunflower.

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Music by "The Emerald Ruby" Emerald Ruby Bandcamp and Emerald Ruby website

Dementia with Paul Hoskins and Tim Wilkins, Alzheimer’s Society

Speaker Key:

MO Moderator

CB Chantal Boyle

PH Paul Hoskins

TW Tim Wilkins

00:00:00

Welcome to the Sunflower Conversations, where we explore the Hidden Disabilities Sunflower and its role in supporting people with hidden disabilities.

Welcome to the Sunflower Conversations. I am your host, and my name is Chantal. Today, joining me is Tim Wilkins from the Alzheimer's Society and Paul Hoskins. The Alzheimer's Society reports that one in three people in the UK born today will be diagnosed with dementia in their lifetime. Globally, someone develops dementia every three seconds, so that's quite a big statistic.

I'm going to give a visual description of myself so that people can get an idea of what we look like, and Tim will do the same. And, Paul, are you comfortable to do that, or would you like me to do that for you?

What will I do?

00:01:13

Describe yourself.

I'll go first, and then you can understand.

Yes. I’ll see how I feel.

Okay. I am a woman with brown skin, long, brown, curly hair. I am in my midlife, which is 50. I'm wearing pink lipstick, and I have glasses on. Paul, if you just want to describe what you look like.

I've got brown hair, not a lot of it.

What colour shirt are you wearing?

I'm wearing blue check.

Yes, and what do you have around your neck?

A lanyard advertising...

00:01:52

The Sunflower.

The Sunflower lanyard. Hidden Disabilities.

Tim, if you could just give a visual description.

I will try and do that, I promise, yes. I'm male, I have a white shirt on today, and I have grey hair. I've been on holiday, so my skin is relatively brown, but it's not normally. I'm pretty white. Yes, I live in Horsham, where we're filming today, and I've worked for the Alzheimer's Society for many years.

Let's get started. Tim, please could you explain, just give me an overview, of what dementia is, please?

Yes, of course. The word dementia describes a group of symptoms. It's caused by different diseases that damage the brain. The symptoms get worse generally over time, and can include memory loss, confusion, people needing just a bit more help with daily tasks, and possibly problems with language and understanding, and, of course, changes for some in their behaviour.

Thank you. Are there any examples of how the more common forms of dementia differ from others?

00:03:00

Yes. Dementia is a progressive condition, which means symptoms may be relatively mild at first, but they can get worse over time. Dementia is not a natural part of ageing, which we're very keen to talk about a lot of the time. We really want to get that message across to everybody.

It's caused when a disease damages nerve cells in the brain. Nerve cells carry messages beTWeen different parts of the brain and to other parts of the body. As more nerve cells are damaged, the brain becomes less able to work properly. Dementia can be caused by many different diseases. These diseases affect the brain in different ways, resulting in different types of dementia.

Am I right in saying that there are hundreds of different...?

Yes, that is correct. Generally, I suppose we've got four main dementias. Alzheimer's is the most prevalent, and then the next common, I suppose, is vascular dementia, followed by dementia with Lewy bodies and frontotemporal dementia.

I think that's quite an important thing to note, because your charity is called Alzheimer's Society. Some people just think that there's dementia and that there's Alzheimer's, but dementia is the umbrella term.

It is, indeed. That's the best way to explain it, I think, Chantal. I think, yes, we do cause confusion by being called the Alzheimer's Society, however, obviously, we support and try and give information out to everybody who's got any form of dementia.

00:04:30

That's great. I believe that Alzheimer's is the most common form of dementia.

Yes, it is the most common, probably followed by vascular dementia. I think for most people, the first signs of Alzheimer's, and other dementias, are maybe problems with their memory, thinking, language, and possibly perception as well.

Thank you. Paul, Thanks for coming today.

Okay. Thank you.

What type of dementia do you have, and would you be able to share some of the symptoms?

I’ve got frontotemporal dementia and Alzheimer's as well, haven’t I?

Yes, I believe you've got a mix, haven’t you?

I've got a mix.

Yes.

What symptoms do you experience, Paul?

In what way?

How did you first know that…?

00:05:20

Something was wrong?

Yes.

My wife took me to the doctor because she said I wasn't right. I was doing silly things.

Have you got an example of some of the silly things? Can you remember, really?

I remember you saying that you were getting pretty forgetful, but was trying to cover it up a bit at work.

I was, yes. So, that was that, and we went to the doctors. We did it all the wrong way round.

Okay. Tell us.

We went to the doctor's first, and then we had all the tests done, MRI and all that done. And then we…

You had to wait a long time, didn’t you?

A wait for ages and ages, but eventually we went private and we got the results straight away, and once we were told what was wrong, we shared it. The first place we went to, was we came in the Alzheimer's Society and say, help. What do we do? And it was Tim's birthday the same day.

00:06:26

You always remember that, don’t you?

I know.

Yes, it was, and I was eating this massive, great piece of cake, if I remember rightly, Paul, yes.

Yes.

Then you made it [overtalking] doing that.

Did he offer you any? No?

But, yet, we were [inaudible]. It just carried on from there, and then you end up loads of appointments, and it was loads of appointments, and two scans, everything.

Yes, there was lots to start with, wasn’t there?

There was a lot to start with.

But you've handled it brilliantly, haven't you?

Yes, I do hope I, A-okay.

No, you are. You're great. Yes.

00:07:05

I help the Alzheimer's Society as much as I can.

By taking part in...?

Well, things like this.

You've done lots of other projects, haven't you? You’ve been involved with the cricket, when the England team was supporting the Alzheimer's Society, and you did a video then, didn't you?

I did.

And you've done one with Suranne Jones.

Suranne Jones.

I think that was a making cake scenario, if I remember rightly.

Yes. Cupcake day.

You finally got to eat some cake.

Yes.

You finally got some cake after his birthday.

[Overtalking] in the end for that.

00:07:41

No, because we were in London, so he didn't get near it, did he?

I wasn't allowed to come that day, was I? No.

I don’t know who even came that day.

No, I wasn't allowed to.

Would you say that your memory is your main challenge?

Yes, it is. Some days I'm quite good, and other days, I just forget. I can't remember what I said. Penny then nags at me.

Very nicely. Nice nagging.

A nice nagging, yes, to say, come on, Paul. You can do it.

It just feels like it's gone. It's gone.

Yes, it is.

But it sounds like not every day is the same for you.

PH No, it's not. I have several different clubs I go to. Rusty Brains is once a month, on a Friday, which is run by Tim Wilkins, and about 30 of us turn up.

00:08:38

A bit less than that, but it is a big group, isn't it?

It is a big group.

It's a very big dementia [unclear] group.

Yes, we enjoy it.

Oh, definitely.

We do, don’t we? We have a good time.

It's great, and very informative as well.

Yes. I do bowling once a fortnight, on a Thursday, and then I do a tapestry club, I've just started, but it’s not a [unclear]. No.

It’s a lunch club.

In my head, I've now got something that you would see in a castle.

Yes.

Some big old tapestry.

No. I go once a week, on a Wednesday, and otherwise, I obviously have appointments to go to.

Yes, but in the summer, Paul, cricket plays a massive part.

Oh, massive part.

00:09:27

Have you always played cricket? Is that something you did before?

No.

And bowls? Is that something you did before?

It’s only since you’ve had the diagnosis, that you've started.

Yes, and we have… What was it?

You've done croquet. You've done all sorts of things.

Oh, croquet, yes.

But the cricket is something. The Horsham Cricket Club are just amazing, aren’t they?

Yes, they look after me. Help me out.

00:09:47

But you then help them as well.

I help them as well.

Look after the pitch and the wicket.

Yes, a good colour on the tan.

Yes, you are looking very healthy.

Yes.

Would you say, these activities, the purpose of them, is it to stimulate connection, and does it help with the brain? Tim, maybe you can answer.

Yes, I think it is that, but it's the socialising, isn't it, as well. Some may argue that bringing lots of people together who are affected by dementia, someone who's caring for someone and someone who has a diagnosis, but it works really well. And I think people who've been playing bowls have got really good at it. At one stage, we were talking about a few of us who volunteer and work here and taking them on. In the end I said, don't, because we're going to get beaten. That’s just great, isn’t it?

But I just think that's brilliant.

Yes, it’s lovely.

Because I think that maybe the perception might be, you've got a diagnosis. That's it. Everything stops. The life stops.

Yes. Life goes on. Dementia doesn't stop life continuing at all. It's very up to the individuals who do that.

00:10:53

You don't have to do it.

And your wife works, doesn’t she, as well, full time.

She works at QEII [?] School, which is a school for children with disabilities.

Yes. But I think by Penny's working, she wants to make sure you're enjoying life and doing the things you want to do, Paul.

Yes, it is. We lost a son when he was 19.

That's hard.

It was hard, but we carry on. We have a daughter. She's as fit as a fiddle.

Yes, she's great, isn’t she?

Yes, she works at Gawtick.

Where you used to work, as well?

I used to work at Gawtick, yes.

Oh, you did?

Yes.

And how long after your diagnosis did you stop working?

00:11:38

I don’t know.

We don't know. It wasn't long, I don't think.

It wasn't long. This is the worst bit. I got told I couldn't drive. That was it, because now, Penny does all the driving, and that's how it works. Not for me, I'll just sit in the passenger seat.

Well, she did say you’re a bit of a backseat driver in the front seat, I think.

I was, yes.

I was going to say, so that, for you, was a big loss of independence, the driving element?

Yes, it was, I'm afraid.

I think it's something that comes up a lot, really. We tend to try and support people who have this conversation. It's a difficult conversation to have, because I think we'd feel the same. However, we have had instances where people have continued to drive and had a few accidents and things. In the end, it was wasn't the right thing to do, and that's it, your licence is taken away, isn't it?

I'm quite happy not having a licence, because the way I look at it, if I had an accident and someone got hurt or anything like that…

00:12:51

You'd never forgive yourself, would you?

I wouldn’t. Some people, when you see driving, you think, how are they driving? Because they're a little bit…

Yes.

You can see it. You're aware of that.

I am aware of it, and it is a bit frightening.

It's a difficult thing to do, because we all know, getting your driving licence, it's a real rite of passage, it feels, doesn't it?

It is, very much, especially when you're younger and you get to drive, that's wonderful, isn't it?

Yes.

Then when you lose it, it's not great, no.

We've done several charity dos, Penn and I, and we raised money for the Alzheimer's Society, and we raised £14,500.

My goodness.

00:13:35

Not bad, is it?

That is.

At the cricket club, with the wonderful support from the cricket.

That's amazing. It sounds, to me, like you've had a second lease of life.

TW Yes, I think you have, Paul.

Yes, I have.

They offer so much, and you give so much to them. It's a lovely connection that you have with them down there.

We do. I think we had 108 people we invited, and 103 turned up.

That is phenomenal.

It was all black tie.

Yes, it was good.

It was good.

It sounds great. Let me know when the next one is, please? Tim, do the statistics vary depending upon where you live in the world?

Yes, it does. Significantly, from what I can understand. For example, in England, diagnosis rates differ by more than 20 percentage points, depending on where you live. In Wales, they vary between 64% to 47%. This shows that your chances of getting an early, accurate, and high-quality dementia diagnosis depends heavily on where you live.

00:14:37

Getting a diagnosis can be daunting, but we believe it's better to know if you do have dementia. The Alzheimer's Society carried out a survey in 2024 that showed 97% of people saw a benefit in having a dementia diagnosis, instead of just waiting, or not going to their GP to get referred on.

It is such a fearful process to go through, because nobody, I would imagine, wants to have that confirmed.

No, of course not.

The benefits of having a diagnosis are what?

Are having the support, obviously, from the Alzheimer's Society. Obviously, we're willing to support people without a diagnosis. However, I think having that, there's clear signs there of what dementias there are and if there's medication available, etc. It's like any diagnosis of any condition, you want to know, don't you? You really want to know, and then deal with it how you can once you've got that diagnosis or not.

The statistic globally, do you have that?

00:15:31

A million people in the UK have a form of dementia. By 2040, it should be around 1.4 million will be living with the condition in the UK. There are over nearly 71,000 people living with young-onset dementia, someone who's diagnosed before 65 years of age. That just seems a hell of a lot of people for that age, because there's still that scenario of, oh, only old people have dementia, which is just totally wrong.

It is wrong, yes. This is a good thing for people to be more aware so that they can be on the lookout for any symptoms, so that they can approach maybe seeking a diagnosis, if that is what is happening.

There are 55 million people living with dementia around the globe, and, again, estimated this number will rise to 139 million by 2050. That’s crazy, isn’t it?

Yes. Is there any research that can explain why the incidence is increasing?

Yes, there is, Chantal. The Lancet Commission on Dementia found that 40% of dementia cases around the world were somehow linked to things that could be prevented, i.e., diet, exercise, etc. As such, steps to prevent dementia are important. While the exact cause of dementia remains unclear, a good diet, regular exercise, proper management of type 2 diabetes, avoiding smoking, and excessive alcohol consumption can reduce someone's risk of developing the condition.

00:17:00

Things like getting a good education, doing challenging work, and keeping your mind and social life active throughout your life can maybe help lower the chance of getting dementia.

Well, it's good to know that there are some things that we can be thinking about to implement.

Yes, definitely.

They're all doable, aren't they?

They are, yes.

You were listening to the Sunflower Conversations. Remember to hit Subscribe. What practical challenges do you face, now you have a dementia diagnosis?

I like cutting the grass. That's a challenge.

Can you explain?

Well, with the mower, it's just a challenge for me, because I get worried, I’ll cut my fingers off, but I do get by. And painting and decorating, I used to do it, but that's gone out the window.

00:17:59

I thought Penny said you were rubbish at it before, though.

More than likely.

Is it a coordination issue with the painting and decorating? Is it the process, the steps of the painting, that you find difficult?

I'm not sure about that. I don't mind doing it.

Yes. I think cooking is something that...

Cooking, I can't. I used to be able to cook roasting and all that. I can't do anything like that. That's all gone now, so I rely on Penny. Good girl, she is.

She sounds like an absolute keeper.

She is. Oh, definitely, I’ll call her a keeper.

Yes, I think, like Paul said, he's outlined some different daily tasks that all of us just take for granted, don't we, like making a familiar meal, or paying bills as well. Possible problems with language, speech, and conversation. Confused about time or place. I come across that quite a lot with people, really. Mood and behaviour changes. I think people with dementia may become more anxious. You suffer with anxiety sometimes, don't you?

I do.

And becoming irritable, I suppose, and characters can change, can't they?

00:19:17

They can.

But I know that you occasionally suffer with that, and just don't really want to do anything, but you seem to overcome it really well.

Yes, I do. I probably like my telly a bit too much as well, because it's a form of entertainment, and it's too easy to sit there and, oh, I'll watch five minutes, but it's 20 minutes later, we're still watching it.

Well, it sounds like you have a good balance with the activities that you're doing in terms of bowling and the cricket, and with watching the television, it’s a bit of relief.

Football, you watch as well, don't you, Paul?

I watch football, and I go to watch Horsham play.

Oh, you do? You PHysically go to the ground?

Yes, I just go to the ground. I don't go any further than that.

Oh, really?

Yes. I'll watch it. But I do enjoy it, and I've done quite well recently, also.

00:20:07

They've done very well, yes.

They've gone up a league, which is good.

Yes, but you go with someone.

I always go with someone, because it's safer, and if we pre-order a ticket, we get a complimentary parking at the front. It just saves me walking across the main road.

Yes, the safety.

It is.

They are. They've really worked hard with their accessibility, Horsham Football Club, and the cricket club as well, but I think you're part of that conversation. You've made the difference, Paul.

Exiting must be, the football ground, there’s a lot of people coming out. I'm assuming that Horsham have a lot of fans.

Yes.

Do you wait until everybody's left before you leave?

Well, because the cars parked inside, we just get in the car and drive out.

Like VIPs.

00:21:00

Yes, I am a VIP.

You are a VIP. Yes, you are. There's no doubt about that, yes.

But that's really nice to know that something that you really enjoy, you're passionate about.

It’s available.

Yes, it's accessible, and you can still enjoy it.

Yes, I do.

Good.

Tim doesn't often come up, because he's a football manager, so he [overtalking] time.

Oh, no, I don’t. Yes, but it is a lovely ground.

It is really good.

They’re nice guys up there, and they're doing their best to make it more accessible all the time.

00:21:29

That's brilliant. We've got premier football clubs that are members as well, and we have just got a new Sunflower friend who plays for Wolverhampton. He's a goalkeeper for them, and he is going to try and get Wolverhampton Wanderers to join, but he would love to see all of the premiership, the EFL. He is really committed to wanting to see all of these enjoyable activities to be accessible for people, Sunflower wearers.

I think it's a really good idea. It's like anything, isn’t it? Any organisation you work with, if you have someone there who has a better understanding of different disabilities, be they PHysical or hidden, they're the ones that can make the change a lot quicker than perhaps us who are trying to encourage people. Whereas they're with those guys all the time, the team and the officials and everyone, so that's a really good idea, isn't it? Hopefully he’ll make a change.

Yes.

We’ll be watching that, won’t we, now?

Yes, I do.

[Unclear]?

I know, the Wolves. That's great though, isn't it? That can make a difference to the whole premiership.

Yes.

00:22:36

Yes. Liverpool Football Club, they’re members, are they?

Yes.

There are other football teams available. What's the public perception, do you think, of dementia?

I think, over the many years that we've challenged people's perceptions in thinking, like we said, about, it's only older people who have a diagnosis, that's changed a lot. I think the Alzheimer’s Society have put a lot of thought to different advertising campaigns, and it's something that we're all very much part of. Everyone who works for the Alzheimer's Society and volunteers, we really want to make any kind of misconceptions very clear that it could affect all of us.

But it's not just that. I think it's the whole scenario of people within a family, if someone gets diagnosed. Like many other conditions, people's lives change. Caring roles are not easy in any instance when someone has a condition, but the time and the effort that carers and love that they put in is amazing. I always think, how did the people do that, really? It's incredible. Unpaid carers are very much part of the basis of supporting people with dementia, and that makes such a massive difference.

00:23:52

But hopefully, any preconceived misconceptions people have, you would like to think that that's wearing a bit thin now, and people understand dementia a lot better, really.

I've seen a recent advert, actually one of your adverts, and the advert starts off with one lady who's not elderly, because I think that's the common misconception, is that it really only affects the elderly. And for anybody that can't see Paul, he is a young man. He's not elderly. He's not, maybe, the perception of what you might think. Then this lady is joined by many more people, and I think the idea is that it's a society. It's a community, isn't it, that can make a positive difference.

Very much.

Because, like you just pointed out, the carers, the people who are the loved ones and who are supporting people living with dementia also need a little bit of care and understanding from other people.

They do. Yes, they definitely do.

So, the more of us that can be a bit more aware, maybe we can then give a helping hand to the carers as well, by way of listening.

Yes, I think that’s about right. Oh, most definitely, yes. I think it's something that, without those carers, where would we be really? I know it's not just dementia that people care for people for. There’s many other conditions and illnesses and diseases, but I think taking that on, knowing that it's a progressive disease, is amazing, really, the work people do and how much time and effort they put into it, don't they?

Yes, they do. It's good.

00:25:25

Yes. For example, your wife, your daughter.

Yes.

They're great, aren't they?

They are. I couldn't do it without them, that’s for certain.

Well, no.

What did you think about dementia before you started to live with it?

I didn't know too much about it, to be truthful, but we obviously got brochures and books and booklets from the Alzheimer's Society, explaining what would go on, and then we just carried on. Some days can be very hard. Some days are a lot easier. We have a dog, and he's a godsend.

Yes.

Because he keeps us on our toes.

00:26:08

You walk your dog a lot, don't you?

Yes. Every day we walk the dog. Either I walk it or Penny walks it, but, yes, it's all good.

Do you go out on your own, Paul, or do you have to be accompanied?

PH No, I do go on my own, but I just vary the length of my walk. If it's weekends, Penny and I might go down to the beach, but he's a nightmare when he gets to the beach. He just yaps, yaps, yaps, and he jumps in the water.

Do you wear your Sunflower lanyard when you go out for your walks?

Do I wear it, Tim?

You wear it all the time, Paul.

I wear it all the time.

Yes.

Paul is wearing a Sunflower lanyard, so that's green with the yellow sunflowers, and it has a card on the front that says, I have dementia.

And on the back...

On the back, it's got a lovely PHotograPH of himself, and then it says, I may have memory problems. I might have difficulty communicating with you and can become anxious. Please be patient with me. There's emergency contacts on there, and there are some icons to indicate what type of support Paul might need. So that's your pal. That stays with you.

Yes, literally.

00:27:21

That is brilliant.

I think it's something, right from the start, Paul, because obviously, you were supporting the initiative when it first came about at Gawtick Airport as well.

Yes.

It was so new then, wasn't it, but you were really keen on the whole concept.

Gawtick was very good, because we went on holiday, and they helped us move on a buggy.

You went on the buggy, yes.

Penny wasn't very impressed with the bleep, bleep, bleep. It got to some of the thing, and we got off all right. Yes, it was, in that respect, and they were very good. We went to Spain, and they had the lanyards on it in Spain.

Did they?

00:28:07

Yes.

They recognised you, and they were supportive?

They recognised me. Yes.

That is the difference between being able to go on holiday and not, isn't it?

Very much so. I think having assisted travel all the airports make such a difference.

It was good.

For some who don't want to ask for that, just wear their lanyard, so it's a really good service, I think.

It is good, yes.

Yes. Lots of people have picked it up and got the idea that it's going to support them.

You find a lot of your community, in the dementia community, people are wearing the Sunflowers?

Yes, they are definitely becoming more popular. You're a pretty good advocate, Paul, with it all, aren't you?

I am.

00:28:40

You're very keen for others to get the drift and wear one. Not everybody. Some people choose not to wear it, or perhaps wear it at certain times, if they're travelling, or going to the theatre, or the cinema, or a sporting event.

I wear it everywhere I go.

Yes.

If I go to the theatre in London, I've always got it with me.

That’s good.

Excellent. What other tools for support are there, Tim? We've just spoken about the Sunflower is a really useful tool. Well, essential.

Yes.

What else are the Alzheimer's Society doing?

I suppose, really, obviously, we have a support line, which is probably the busiest scenario around out there, but people always get phoned back. There's a number of people who work for our support line, but it is very much around personalised information that people get and the support and advice, hopefully, that they need. I suppose that gives people that listening ear on the phone to visit a person, and people will get visited by someone from the Alzheimer's Society in certain areas.

00:29:44

And obviously, the opportunity to connect with others, which I think the peer support is pretty key for many. I know our carers group, just in West Sussex, are very popular. You talk to some of the carers who go along, it is very much about meeting others who've perhaps been in different situations, but everyone can learn from each other, really, so that works really well.

I think one of the things that we talk about at the Sunflower, is that no Two individuals are the same.

All different.

We're all different, Chantal, aren't we?

Yes.

We experience different conditions differently, and dementia is certainly one of them, and, of course, the symptoms are so different as well, yes.

We just recently had a Dementia Friend Session.

Did you?

Would you explain what that is, in case anybody else is listening and they'd like to participate or [overtalking]?

Well, I can certainly talk about that, yes. Alzheimer's Society Dementia Friends is about increasing people's understanding and awareness of dementia, inspiring everyone to make a difference for people affected in their communities. I suppose that, for example, could be checking on a friend who is caring for someone with dementia, being more patient in a shop queue, or taking part in a fundraising event. I think whatever you choose to do, a little understanding makes a big difference.

00:30:58

If you are working at a company, I can advocate for this, you can book a Dementia Friends Session for your organisation.

You can, yes. Just go through our support line, and they’ll put you in touch with the most appropriate people at the society. I think there's Two ways people can now do it. When it first started, it was just face-to-face with big groups. I always remember the first Dementia Friend Session I did with a colleague of mine, and they're supposed to last about 50 minutes, an hour. This one went on for two and a half hours, the first one, and it was with a group of South Asian ladies in Crawley, and they still remember it now. Why were we there so long, Tim?

I think you can either do a short video online, so there's a virtual option, or have the face-to-face one. I think the face-to-face one is better, because, once again, you've got a collective of people. People can ask questions, and everyone learns from those questions and answers, really.

Yes. We had a virtual one with one of your lovely Dementia Friend volunteers, and it was great. It really opened eyes and ears, and it also gave people an opportunity to share what was going on in their own families.

00:32:04

Yes, it often happens, and I think sometimes people aren't even aware of our support line, our phone number, and our email address to get hold of people, our brilliant website. It's also an opportunity for people, not just to learn about how to become a Dementia Friend, but it's also to give people awareness of what's out there for them.

It's probably about the third time I've done it. I've done it quite a few years ago in my old company, and it really opened my eyes. There's been a couple of times where I've come across somebody, and I thought, I think they might have dementia, and I've been able to just gently steer them in the right way.

There was one gentleman, I know he lives in my area, and I was getting off the train, stopped earlier because I was going to the pub, and he got off. And I just felt like he got confused with the stop, and I was able to just redirect him to get back on, and get off at the next stop.

Yes, I think it does make a difference. I think it's just that bit of understanding, that little bit of knowledge, and you can then support people who you think may need a little.

Yes.

00:33:13

It's the same with the lanyard, though, really, isn't it?

Yes.

People aren’t asking for someone to rush up to them.

No.

It's just, somebody may need a bit more support, yes.

And this gentleman was very self-sufficient, and I know that he had a routine, because I used to see him on my commute and what have you. And there was another one, because one of the things I learned on one of the earlier Dementia Friends talks I went to was that sometimes these big black mats that shopping centres, for example, might have when you enter, could look like a great big hole for some people with dementia.

Yes.

Is that right, Paul?

Yes, it is.

00:33:53

We’ve met people at Horsham Rusty Brians, haven’t we, who've talked about this before, and becoming quite fearful of going into a supermarket and coming across these mats and things. When I first saw that, that was part of the Dementia Friends, you think, really? But then when you get to know people and talk about it, yes.

Again, I have seen someone about to enter a shopping centre and being kind of transfixed, and I was like, oh, I know why that is, and then I was able to approach them and offer them a little bit of help.

Yes, well, that’s nice.

That's the beauty of having one of these talks. I actually wanted to ask a little bit more about that in terms of patterns, because when I was thinking about what clothes I was going to wear today, I have some trousers that are leopard print. They're light brown with black splotches on. I thought to myself, I wonder whether that would be in any way disconcerting, so I specifically chose to wear something that was totally plain. Is that something that you need to think about, or is it just overthinking?

Maybe overthinking. It's worth thinking about all those sorts of things if it's going to not help someone who you're meeting up with, but I've never heard the leopard skin blouses making a difference. Have you, Paul?

No.

Next time I see you, I'll put them on.

Yes, go for it.

00:35:23

Have you got any advice for somebody who is just starting on their journey with dementia?

Paul, you are very good at this, aren't you?

In what way?

The things that you would say to people to do if they got a diagnosis of some form of dementia.

Yes. I would advise them to take all the help they can get, because there is help out there, and they will help you.

I suppose going to the most appropriate organisations.

Yes. Obviously, we’ve got Alzheimer’s Society.

But there's other organisations out there as well.

Yes, there is.

It is, and I think you and Penny like the idea of meeting up with other people.

Yes, we have. We will have a group, and have a chit chat.

00:36:12

Yes, and try and carry on as normally as you can, in your normal life.

Well, I have. Well, Penny obviously works, and she works full time, and she's got to keep her job.

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Stairs are not great for me. I'm all right going up, but coming down, that's a little bit of a tricky situation.

Yes.

Is it that you're not sure where the next step is?

No, I'm not sure.

It's a good thing you live in a bungalow, though. Sorry.

Yes.

But it is good, though, isn’t it?

That's quite frightening.

Yes.

It is.

Well, we had this, didn't we, when we were out the other week, when you said, I'll be very careful going down these stairs.

00:37:01

Yes. It is, too. Next is the worst ones in Horsham.

Oh, is it, the shop?

Yes, terrible.

So, actually, having a lift available is really important.

Yes. It's wonderful. It helps me a lot.

Yes, and that's a symptom that has come a later stage, really, isn't it, that mobility?

Yes. As I've got older, that's affecting me more.

Yes. But like you said, Paul, the thing is to seek support if you want to.

If you want it.

I do think people need to be a little bit proactive and actually ask for support if they want it.

Yes.

Because generally, organisations aren't going to approach people straight away. I think looking through all the different options that you've got out there and finding out what's going on around in social care and all the holistic things, meetings and all sorts.

00:37:53

I’ve found it a little bit hard this year. We have music in the town at the Carfax on a Friday night. It was loud, too, and there was lots of different groups.

Yes, lots of different genres of music, wasn’t there?

Yes, there was. We had Elvis, we had Mamma Mia and all that, but there were so many people there.

You didn’t like that?

It was a bit too much.

Yes.

We could just walk away. It doesn’t cost us, it's a freebie thing anyway, so we just go elsewhere, or perhaps we went in a different part.

Yes, likely.

So, participating at your comfort, and your comfort level is important, so don't be afraid to try something, but if it's too much, that's fine, just step away.

Yes, definitely. I think it's not for everybody. Some people will just leave things and then suddenly think, oh, we need some kind of support, and that's fine, but for others who I think find out early on, I think there is a little bit of a, perhaps, I don't know, is it a better outcome? I'm not sure entirely. But some people just carry on their lives, but also seek support, so they know what's out there if need be. Perhaps look at it that way.

00:39:07

Well, thank you both for your time. This goes out globally, and there are dementia support, non-profits and charities, Alzheimer's Societies globally, so do reach out. Obviously, always go to your health care provider. I think Paul is a great example of how you can continue to have fun, learn new skills, and be part of still your community.

Very much.

Yes, a couple of [unclear].

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00:40:49

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Chantal Boyle

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