Supporting people with dementia to get out and about

GINA SHAW:

Co-chair of SURF

[00:00:01] He’s going to get the Diddy Men in.

TOMMY DUNNE:

Co-chair of SURF

[00:00:05] An old Ken Dodd joke:

[00:00:06] Your brain’s a wonderful thing; starts working the minute you’re born and doesn’t stop until you get to speak in public.

GINA SHAW:

[00:00:16] And he uses that all the time.

TOMMY DUNNE:

[00:00:17] I do [laughter].

[00:00:21] A Window of Opportunity

TOMMY DUNNE:

[00:00:28] When you think that a third of people with dementia in this country live alone in the house, we want to come out into shops, enjoy the aromas in the cafes and we need transport to actually get us here.

[00:00:40] We’re actually working with the bus operating companies who’ve asked us to go into the depots and talk to the bus drivers so that they will have an understanding.

GINA SHAW:

[00:00:48] Yes, so that we can encourage people to be able to go out on their own on buses and feel safe.

[00:00:55] Goodison Park Stadium

PRESENTER:

[00:00:58] SURF is a Liverpool-based group made up of people living with dementia, carers and professionals who meet once a month to drive forward changes in local services and the community.

DR SARAH BUTCHARD:

Clinical Psychologist, Mossley Hill Hospital

[00:01:09] I’ve worked in dementia services for a while and I’ve always felt that people can live positively with dementia.

[00:01:14] But people with dementia have got the best view of anyone of what people with dementia need.

[00:01:19] If we really listen to what it is that they’re bringing, we can truly develop the services that are going to meet their needs and enable them to have the best quality of life that is possible.

STANLEY LIMBERT:

Member of SURF

[00:01:29] It makes a big difference. It certainly makes a difference to me as an individual, because I’m getting more of an insight and I have some influence.

PART & DAWN:

Carers & members of SURF

[00:01:36] We work on practical solutions to problems that we all encounter.

[00:01:41] We just want somewhere where we can go and express our feelings and get things done.

GINA SHAW:

[00:01:47] We asked members of SURF what shops and business that they might like us to look at.

[00:01:53] What we did was contact all of those places and invite them to an event here at the Town Hall.

TOMMY DUNNE:

[00:01:59] The people that came were top managers, people who could actually change policy within their own shops.

GINA SHAW:

[00:02:04] It’s empowering people living with dementia, and their carers, to be able to feel that they can go into these premises, into these businesses and be treated well.

[00:02:17] We know that dementia is a progressive condition but we’re making the most of it while we can.

TOMMY DUNNE:

[00:02:22] We know we haven’t got ten or twenty years with Gina but we’re realistic.

[00:02:28] We know we’ve got a window of opportunity and the chance through the SURF people to actually help.

[00:02:32] One of the best things I ever heard one fellow say to me was “You’ve inspired me, you’ve given me hope,” and I thought that’s what we want.

SURF Liverpool is one of over 50 groups led by people with dementia around the UK who are working hard to achieve change in their communities

www.dementiavoices.org.uk

GAVIN WATKINS:

[00:00:04] When I was diagnosed with early onset of Alzheimer’s in Cornwall, and the psychiatric nurse used to come and give me the tablets,

[00:00:13] he would phone up once a month and then after he’d finished work and say “Everything okay?”

[00:00:19] We’d say “Yes, no problems”.

[00:00:22] “Okay I’ll be round with your prescription”, and when he turned up it was “See you next month”, and that was it.

[00:00:29] And I saw a GP once a month there. Nothing at all, no support whatsoever.

[00:00:36] We came here and because we moved areas I had to go and see a specialist and they suggested I went to these memory cafes because I was just vegetating and doing absolutely nothing.

[00:00:48] I had no conversations whatsoever, it was a yes and no, if you could get that out of me.

[00:00:55] I started going, I didn’t like it, I didn’t want to go again after the first week.

[00:01:01] The second week no so bad, now I just can’t leave them alone, I’ve got to go to them, I’ve got to be there every week if I can.

[00:01:11] We’re lucky, we have a vehicle, but there’s people out there that haven’t and it’s absolutely ridiculous the amount of people that can’t get there.

[00:01:21] There’s over 9,000 that aren’t getting help, what they need.

[00:01:27] The services are out there, the memory cafes are there, but it’s being able to get to them is the biggest problem we’ve got.

[00:01:34] I’ve set up a charity, Blaenau Gwent Dementia Community, to help people in Blaenau Gwent with dementia to get to these places because of transport is our biggest problem.

[00:01:34] It brings you out into the community.

[00:01:50] You go to chat, you talk to other people with the same problems as yourself and other problems.

[00:01:58] The carers are able to talk to other carers so they know they’re not left on their own, and they’re not the only doing this sort of work.

[00:02:07] What we’ve got to remember is every one of us is different, we’re not all the same, we all need different treatment.

Aunty Glenda’s Project

Bryn Beryl Hospital

Hafan Ward

MORGAN:

[00:00:16] What I remember most is going to Bryn Beryl to the Hafan Ward.

[00:00:25] I enjoyed being able to play games and things like that with the people who had dementia to get to know them a bit more.

CHERYL WILLIAMS:

[00:00:31] It’s important for children to come to understand a little bit more about dementia so that we create communities that understand dementia from the very beginning.

[00:00:44] And as children understand more about the condition, they can then be more tolerant of people who are living with dementia in their own communities.

[00:00:55] Aunty Glenda’s Project

CHERYL WILLIAMS:

[00:00:58] Or a memory or a skill. You know, you’ve written there now, everything that the brain helps us to do, well, every one of these lights represent something like that, and what dementia...

MORGAN:

[00:01:13] Everyone in the class got a card with a job that you are used to doing in a day,

[00:01:17] and then she had red wool and she connected them to each job.

[00:01:23] And then when you become more affected with dementia, it’s broken and then they forget things.

[00:01:29] Perhaps they forget going to brush their teeth and they go straight on to doing something else.

CELT:

[00:01:38] When you cut one strand it was like something going out of your memory.

CHERYL WILLIAMS:

[00:01:43] So as we get older, not everyone will get dementia. It's not a natural part of getting old.

[00:01:52] Well, Dementia Friends began in 2014 and it comes under the Alzheimer's Society. [00:02:01] It’s supported by the Government as part of the campaign to get communities that are more tolerant of people who are living with dementia.

[00:02:12] What do you see in that picture?

BOYS:

Two people talking.

CHERYL WILLIAMS:

[00:02:15] Two people talking. What else can you see in it?

[00:02:20] The shape of a cup in it, isn’t there? A different shape, what we see there.

[00:02:28] It's an opportunity to start the conversation about dementia so that we try to get rid of the stigma and the fear that’s associated with it as well,

[00:02:39] and by having Dementia Friends people can understand a bit more about the condition, about the illness, and be a little more supportive of people who are living with dementia.

[00:02:52] Thirty, twenty, up to ten years old, who remembers their first day at school?

GIRL:

[00:02:57] My first day in this school, I remember sitting on the mat and trying to remember everyone’s names.

CHERYL WILLIAMS:

[00:03:02] Trying to remember everyone’s names.

PHOTOGRAPHER:

[00:03:11] Big smile now, one, two, three.

12 October 2016

Hafan

Bryn Beryl Hospital

EDWIN HUMPHREYS:

Staff Nurse, Project Co-ordinator

[00:03:22] Thank you for coming. This is where we’re working, in Tŷ Hafan isn’t it, and it’s like a Day Club, a Day Club for people to come from home if they want to come in to see us.

[00:03:35] After Cheryl visited the school, we had an open day in the Hafan Unit.

[00:03:39] The Hafan Unit is where we go to introduce the children to people who suffer from dementia.

[00:03:46] We’re a Unit that holds activities here. It’s day care that we offer and we’re open from nine until five.

[00:04:05] And the children were playing games with people all day, and they were having a lot of fun together.

[00:04:10] That broke the ice.

[00:04:11] The children could see that these people were not as bad as all that, and they're not some very odd people, they're just people like you and me, and that worked very well.

MORGAN:

[00:04:33] Everyone there had interesting stories.

[00:04:55] 16 November 2016

MARI IRELAND:

Community dementia nurse

[00:04:59] I had no idea what dementia was at the time. We’ve come a lot further now haven’t we, with time? And a lot of people know about dementia I think, don’t they?

[00:05:08] I work as a community nurse in south Gwynedd, working with young people with dementia and then I know Edwin through my work and he contacted me to do some work with schools through the medium of Welsh.

GLENDA ROBERTS:

[00:05:25] Because I’m young, Young Onset Dementia they call it, that’s what people my age get.

[00:05:33] I was forgetting to send birthday cards, I was ... I had, perhaps a dental appointment, I would forget to go to the dentist’s surgery.

[00:05:44] Oh, I did a lot of tests and then they found that I had dementia.

[00:05:51] And when this was happening, I was worried, I was very worried because I didn’t know what was the matter.

[00:05:58] I knew that there was something the matter but I didn’t know what.

[00:06:04] And then when they said “Yes, you’ve got dementia,” it was a relief because, well, I knew what I had to do, I knew what I had to deal with.

MATH:

[00:06:20] To start with, she was forgetting what everyone wanted, what everyone liked for tea and then she started forgetting more important things.

GLENDA ROBERTS

(Aunty Glenda):

[00:06:31] Living with dementia is difficult. There’s nothing easy about it.

[00:06:37] Your life changes, but with the support of the family, and somebody says “Come on, you can do that,” and then I haven’t just sat in the house, I carry on going.

MARI IRELAND:

[00:06:51] What was very obvious, from sitting with the children after they heard Glenda talking, was the big difference in the way they responded to dementia.

JAC:

[00:07:03] Forgetting the names of her friends.

MARI IRELAND:

[00:07:08] It’s obvious that they listened and took a lot of information on board, but what was really, really lovely was when one little girl said…

GLENDA ROBERTS:

[00:07:18] “I was afraid of dementia but I’m not afraid now.” And that was a really lovely thing for both of us.

MARI IRELAND:

[00:07:26] And that was the best thing that could have come out of the project in terms of what I felt about what we were doing and also how Glenda felt, I think.

GLENDA ROBERTS:

[00:07:37] Yes, I like making cakes and things, so I still make cakes, I still do everything myself in the house, but Mari is an important part of my life and my family.

TEACHER:

[00:07:55] Right, that’s it, Glenda [clapping sound].

[00:08:08] 23 November 2016

CHILD:

[00:08:09] Anni Llŷn came to write a poem with us.

ANNI LLŶN:

[00:08:18] Today, I’ve been doing a workshop with Year 6, a workshop with words and we were creating, talking about feelings and emotions and the fact that everyone has feelings;

[00:08:30] everyone feels a mixture of feelings and emotions.

[00:08:36] So, what the children were doing was trying to put every emotion into a little verse.

CHILD:

[00:08:42] Fantastic.

ANNI LLŶN:

[00:08:43] Fantastic!

MORGAN:

[00:08:44] We had to think about a feeling that people with dementia would have and then we had to create a poem about that.

ANNI LLŶN:

[00:08:50] Who's finished? Okay then.

CELT:

[00:08:53] I feel confused

Grey like a cloud

It happens when I hit my head against the wall

The sound of children on the road shouting

Talking

Confused.

ANNI LLŶN:

[00:09:06] Very good.

[00:09:07] And the idea that they consider that it doesn’t matter what your situation is – you might be ill, you might be completely healthy, you might be unemployed, you might have very heavy work and be very busy –

[00:09:21] whatever your situation, everyone feels and treats their feelings in a different way and that’s what connects everyone. So, that’s what we did today.

[00:09:31] You’ve done excellent work and thank you very much for working hard with us this afternoon.

[00:09:40] 05 May 2017

TESS URBANSKA:

Artist

[00:09:49] We created animations today that were inspired by the poems the children had already written with Anni Llŷn.

GIRL:

[00:09:57] A happy cloud flies in and about half way it’s going to be sad because it feels confused and it starts to rain and the words, that are a little confused, run after it.

MORGAN:

[00:10:28] Every group gets a poem and then we had to make an animation to go with that and then, yes, that was very interesting and I didn’t know there was so much work involved in animation before.

MARI IRELAND:

[00:10:42] The hope is, now that we’ve completed this project, that other schools will take up the reins and do something similar in their communities, or in their schools, to support dementia.

[00:10:56] Once children gain an understanding and learn about dementia, the hope is that then it is taken forward into families and to the communities in which they live in order to make life better for people with dementia, to create friendly communities and let people or allow people to work much longer in their communities, well and safely.

CELT:

[00:11:23] I think it’s important to get to know how to treat people like that. They’re no different to us. They're people too.

MORGAN:

[00:11:31] You never know to who it’s going to come. It could come to anyone.

[00:11:36] The Poems

[00:11:38] Red like the school’s polo shirt

I see a flash of lightning

I hear the sound of a train on the track

I’m unhappy.

[00:11:50] Blue like the sea bed

I see a snowman that has melted

It sounds like a trombone that’s out of tune

I feel disappointed

[00:12:01] Pink like a butterfly

I see Father Christmas

I hear bells ringing

I feel happy

[00:12:09] Light like the sunset

I can see the ground opening

It sounds like a fire crackling

I feel jealous

[00:12:15] Green like the Wales field

I see fireworks

I hear popcorn popping

I feel wonderful

[00:12:23] Yellow like a flower

I see chocolate dancing

I hear autumn leaves crunching

I feel fantastic

[00:12:33] Red like the Wales field

I see a bull

I hear shouting

I feel angry

[00:12:44] Grey like a cloud

I see words bouncing

I hear millions of voices

I feel confused

[00:12:52] Purple like a bruise

I see nothing

I sound like a fart

I feel ashamed

[00:12:59] White like paper

I see stars

I hear dishes falling on the floor

I’ve had a shock

CELT:

[00:13:11] In the future, there won’t be such a thing as dementia and you can find something to avoid the illness and to make them better, hopefully.

Song

[00:13:20] Thank you Aunty Glenda

You really are a friend to us.

Teaching us about dementia

Thank you very much from us.

[00:13:45] Thank you Aunty Glenda

You really are a friend to us.

Teaching us about dementia

Thank you very much from us.

Closing credits

Many thanks to

Glenys Roberts

Mari Ireland

Children and Staff of Ysgol Pentreuchaf

Staff and Group at the Hafan Unit

Dr Catrin Hedd Jones

Sean Page

Children and Staff of Ysgol Llywelyn

Bryn Hesketh Unit

Jane and David Lawson

Kerry Macdonald

Cheryl Williams

Anni Llŷn

Tess Urbanska

Pant yr Hwch Children’s Choir

Edwin and Ceiri Humphreys

Pant yr Hwch Studio

End