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Harmonising Minds Dementia Friendly Music & Arts
Episode 24011th December 2023 • Dementia Researcher Vodcast • Dementia Researcher
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In this episode of the Dementia Researcher podcast, guest host Dr Robyn Dowlen leads a fascinating exploration of the intersection of music, arts, and inclusivity in the context of dementia.

This episode features a trio of remarkable guests who have been instrumental in integrating dementia-friendly initiatives into the arts. Our guests are Holly Marland, Former Churchill Fellow and Music Therapist and dedicated advocate for community music projects; Dr Andy Northcott from the University of West London, who brings an academic perspective on the impact of arts and how to make events more accessible; and Liv McLennan from Sounds Better Community Interest Company, a pioneer in using music as a bridge to memory and joy.

The episode explores the inspiring stories behind our guests’ projects, ranging from festivals to operas, highlighting how they’re creating spaces where every note and performance opens doors to accessibility and understanding. Robyn, a researcher at the University of Manchester, also shares insights from her work on capturing the musical experiences of people with dementia. This episode is not just about the arts, but also about how these initiatives foster community, inclusivity, and a deeper understanding of dementia’s impact on lives. Tune in for an enlightening discussion that promises to be as informative as it is inspiring, showcasing the powerful role of arts in enhancing the lives of those living with dementia.

Links mentioned in the show:

A transcript of this show, links and show notes and profile on all our guests are available on our website at https://www.dementiaresearcher.nihr.ac.uk.

If you prefer to watch rather than listen, you will find a video version of this podcast on YouTube, on our website, and in selected podcast platforms.

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We gratefully acknowledge the support of our funders: Alzheimer’s Association, Race Against Dementia, Alzheimer’s Research UK, Alzheimer’s Society, and the National Institute for Health and Care Research.

The views and opinions expressed by guests in this podcast are their own and do not necessarily reflect those of the producers, funders, or sponsors.

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Transcripts

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- [Voice Over] The Dementia

Researcher podcast,

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talking careers, research,

conference highlights,

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and so much more.

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- Hello and welcome to the

Dementia Researcher Podcast.

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I am Dr. Robyn Dowlen and

it's my absolute pleasure

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to be guest hosting today's show.

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In this episode, we'll be exploring

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the beautiful intersections

where music, arts,

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and inclusivity meet, and how

they transform the experiences

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of those living with Dementia.

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Joining me are three fantastic guests

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who've been at the forefront

of weaving Dementia friendly

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initiatives into the rich

tapestry of the arts.

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So we have Holly Marland,

who has enriched lives

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through her commitment to

community music projects.

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Dr. Andy Northcott from the

University of West London,

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bringing us insights from

academia on the impact

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of the arts and opera.

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And Liv McLennan from

Sounds Better Community

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Interest Company, an

innovator known for her work

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in using music as a

bridge to memory and joy.

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Together we'll uncover the stories

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behind their inspiring projects

from festivals to operas

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and discuss how their crafting

spaces where every note

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opens doors to accessibility

and understanding.

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And before we get

started, just to tell you

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a little bit about me as well,

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I'm a researcher at the

University of Manchester.

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And in my work I look at how

we understand and capture

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the in the moment musical experiences

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of people with Dementia.

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But that's enough from

me. Let's meet our guests.

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(bright music)

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So before we talk about

their individual work,

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let's get some proper introductions.

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Holly, can you start us off?

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Can you tell us a bit about yourself?

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- Well hi there Robyn.

It's lovely to be here.

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I am a freelance professional musician

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and a music for health specialist,

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and I work in hospitals, care

homes and daycare settings

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with people of all ages.

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I've been learning and playing the kora,

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which is a traditional West African harp.

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And I've been playing

for about 13 years now,

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supported by my amazing

teacher, Mohammed Saho

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who lives in The Gambia.

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And I started my musical

journey on the piano

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and in the local church choir.

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And I've always written music

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and I've always felt that I wanted

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to bridge the performer audience divide,

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which I felt was always a

culturally imposed thing.

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So I love working within

different communities

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to co-create music and

to share ideas together.

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- Thank you, Holly. That sounds wonderful.

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I'm looking forward to

unpicking all of those things

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with you later in the episode.

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Andy, can I come to you next?

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- Yeah, of course you can.

So I'm Dr. Andy Northcott.

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I hate how long winded my job title is.

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I'm a Senior Lecturer

of Sociology of Medicine

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at the Geller Institute

of Ageing and Medicine

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at the University of West London.

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Takes a deep breath.

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My main research is sort

of unrelated to the arts.

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If anyone googles me,

you'll find lots of stuff

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about hospitals.

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For the last almost 10 years,

I've been doing ethnographies

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of hospital care and observing

people living with Dementia

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during unplanned acute

hospital admissions.

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And kind of my side second job,

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because that doesn't take

up enough of my time,

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is trying to make social

spaces more accessible

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for people with Dementia.

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So that started with about seven years ago

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looking at making cinemas

Dementia friendly.

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And in the last year I've been

working on Dementia friendly

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operas, which I'll be

talking to you about later.

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- Amazing, and welcome

to this wonderful field

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of arts and Dementia, we're

a friendly bunch (chuckles).

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Liv, can I ask you to

introduce yourself as well?

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- Thank you, Robyn. Great to be here.

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So my name's Liv McLennan

and I'm a musician

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and community musician.

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I'm based in Wilshire now.

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I play the cello and

the Highland bagpipes.

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But more recently the ukuleles

become quite important to me

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and in my work as well.

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And also in my research, I'm a

part-time doctoral researcher

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at the Guild Hall School

of Music and Drama,

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and they also run a

community interest company

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called Sounds Better.

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- Thank you so much.

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It's just wonderful to have

such an array of expertise

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within the virtual room.

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(bright music)

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Okay, I think it is time

that we heard a bit more

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about your individual work.

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So Andy, if I come to you first,

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I know opera isn't your

first look into Dementia,

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but I'd love to hear

about how that came about.

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How have you become immersed in this area?

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- It's kind of funny because

been doing ethnographies

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of hospitals for about 10 years

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and nobody's ever really cared.

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I've suddenly got into opera

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and I've had to make all these

various media appearances

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and just hope nobody ever

asks me anything about opera

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because I've only ever been to two operas

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and I produced one of them.

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I kind of looked into being able

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to put on a Dementia friendly

opera in that I'm friends

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with people who run an

opera company in Wiltshire.

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So probably not far from where

I live is The Music Troop

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with Edward Lambert.

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And just sort of over dinner,

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we were talking about him

looking for new audiences

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and I suggested, well, have

you thought about doing

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Dementia friendly performances?

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And sort of from there,

probably a glass of wine,

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too many this escalated

and before, you know,

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we were putting on a production.

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So beyond my lack of knowledge of opera,

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I'm much better on sort

of hip hop and '80's pop

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than I am opera.

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But for me it's that communal thing.

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And it doesn't really matter if it's opera

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or if it's a rock gig or

if it's standup comedy

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or it could be reggae or

heavy metal or anything.

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It's that communal thing

of being in a place,

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sharing musicians, giving you

something powerful, visceral,

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that you latch onto and takes

you away from where you are.

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And also that thing of just

being out of the house,

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I have this big thing of,

to use one in the media so,

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so Bobby Charlton died

a couple of weeks ago

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and all obituaries sort of talked about

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how he lived in the shadow of Dementia

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and this shadow kept coming up.

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And it's taking that out of that that yes,

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you have that diagnosis of Dementia,

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but that shouldn't mean

that you are stuck in,

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to quote another musician

with David Bowie.

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It shouldn't be, "Pale

blinds drawn all day,

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nothing to do, nothing to say."

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You've still got years to

go and you've got family

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and friends and people to see

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and you should be able to go and see them.

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And if music was part of your life before,

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or even if it wasn't,

it should still be that

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really up until the point

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that it really physically can't be.

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And so we did an opera and I

think if you can do an opera,

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you can do anything.

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- Thank you so much.

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And I think it speaks to the

real importance of, yeah,

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not as you say, not simulating these,

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but actually giving real

opportunities for people

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with Dementia to engage

with high quality arts

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in the real world.

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So I'd love to hear a bit

more about the process.

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You said you've got this

kind of full audience.

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How was that process for you?

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- So the opera, we came up

with the sort of basic idea

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of the music troupe had a new opera

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they were going to premier

at the Tete a Tete Festival.

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It was called The Last Siren.

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It's a sort of small

contemporary chamber opera

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based on the Greek myth

Sisyphus and the sirens

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willing the ships onto the rocks.

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And the opera itself, we didn't change

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it was gonna be performed the next day.

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We had the musicians, we had the singers.

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So it was how do we put this

on and make it accessible

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to people living with Dementia?

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That was kind of the tricky bit.

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That was when I had to put

on my challenge Anneka hat

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and start cold calling venues

and seeing what could be done.

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And we really struggled with sort of,

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and answered emails and

venues that wanted to help

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but weren't quite sure.

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And then I stumbled on

by the biggest accident,

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I emailed the London College of Music

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and I hadn't realised

they were actually part

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of University of West

London and even weirder

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or I didn't realise

that they had a theatre

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and it was next door to my office

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had I ever ventured slightly

further down the corridor,

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like literally three doors down.

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We had Lawrence Hall, this fantastic,

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so looks like an old school theatre,

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the sort of, we always joke,

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it looks like it's where

the kids from "Fame,"

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would hang out, it's just

full of all these young people

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playing music and being very good looking

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and enjoying themselves.

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And we were like, okay,

so can we use this space?

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And they didn't ask any questions.

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They were just like, yes,

please. How would it work?

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Can we come in?

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Everything moves around, what

can we do to facilitate this?

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And once we had a venue,

it was really quite easy.

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I mean, I say easy, I'm an academic

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and it was in a university.

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So I then I spent two months going through

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every health and safety and

risk and prevent procedure

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you can think of.

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But beyond the normal university

stuff, the actual hosting

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of the event was okay actually, in fact,

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possibly the hardest thing we

had was getting an audience.

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So we had a venue, we had a production,

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we had everything in place.

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But then it's how do you communicate

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to people living with Dementia?

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Especially if they're

already feeling cut off,

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like I discussed before,

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I'm worried I'm rambling

now, but I'll keep going.

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It's that you can't just stick

it on Facebook or Twitter

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because not everybody's online and people

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aren't looking for things.

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And we timed it just for the moment

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where the Twitter

algorithm kind of fell away

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and all the people that

used to see your tweets

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stop seeing your tweets anyway.

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So getting the message out

was kind of the tricky part.

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And we had to reach out

to lots of organisations

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and begged for publicity and support,

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but everybody was really helpful with it.

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And we managed to put on

the production, fill it,

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sell out all the seats,

yeah, it was great.

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- Yeah, I think that's such

a wonderful kind of vision

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for the world and communities

to be more Dementia friendly

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so that people can kind

of cross those thresholds

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as it were into these

spaces and feel confident

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that they're gonna be supported

when they're there no matter

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what's going on.

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And perhaps this is a good

point at which to come

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to you Holly, in terms of the

So Many Beauties festival,

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I know this is another event that happened

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within a very established

arts venue as well.

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So I'd love to hear about

your kind of your process

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for developing the

festival and how it went.

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- I just wanna start off

by saying that people

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living with Dementia have

taught me so much about the joy

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and potential of being

in the present moment

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and they're constantly

amazing me with their wit,

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wisdom and creativity.

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So I set up the So Many

Beauties project in:

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with funding from the

Arts Council England.

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To work co-creatively with

people living with Dementia

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in their communities of care.

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To harness this incredible creativity.

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And so we work together

to compose new music

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and we work together to devise

large scale cultural events

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that counter as Andy and yourself

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have just been talking

about the tragedy narrative.

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And what we're doing is

showcasing what people

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living with Dementia can

do rather than focusing

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on what they can't do anymore.

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So we're currently working

on our second large scale

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Dementia friendly music festival,

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which is gonna be at the

Bridgewater Hall in Manchester

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and it's next September,

on Friday the 20th.

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So everyone get your

diaries out now put that in.

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And what we've done is

we've brought together

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a stakeholder group of

18 cultural organisations

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and Dementia support organisations

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who are working across Greater Manchester

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and we're gonna be working with members

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of their Dementia support groups to devise

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all the content for this one day festival.

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So this includes working

with support groups

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that are for members of the South Asian

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and African Caribbean communities,

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as well as with Manchester's

LGBTQ+ communities.

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You're probably familiar with the work

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that the Baring Foundation has been doing

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around increasing

representation in the Dementia

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and mental health workforces.

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And so during the pandemic

I formed a collective

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of musicians from different

ethnic backgrounds

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who are going to be

developing their skills

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in this co-creative

practise working with people

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living with Dementia.

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And the So Many Beauties

collective recently featured

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we had a brilliant project

launch at the Bridgewater Hall,

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a smaller event, just a half day event.

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And the collective accompanied

new music that they'd written

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and they performed with the Age UK

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Salford's brilliant Buddy Club.

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And we were so pleased to see the audience

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who were a complete mix of

people living with Dementia.

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We had four different

Dementia support groups come,

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we had researchers, we had

strategic decision makers

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from Manchester City Council and everyone

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was just really positive about

this intercultural co-created

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programme premier, no lyric sheets needed.

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Buddy Club remembered

all their new song lyrics

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and rhythms with no need for prompts.

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So this really combated the popular belief

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that only old familiar songs will do.

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So the festival itself is

actually gonna be very diverse.

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We are taking over the

entire Bridgewater Hall.

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And we're going to be curating

a programme of new music,

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dance, theatre workshops,

discussions, cabaret,

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intercultural afternoon tea,

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whatever our wonderful participants

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decide that they want to see

developed or commissioned.

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So watch this space (chuckles).

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- That sounds absolutely wonderful

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and I've made a note in

my diary for next year

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so that I can hopefully come along.

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I'm really interested, we hear

this word kind of co-creation

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a lot within this field.

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What does it look like in practise?

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- So musically speaking, because

we are devising new music,

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we are using musical

improvisation as a starting point

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for creating new songs

and new pieces of music.

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So we will probably

build from simple songs

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and we'll try and evolve those.

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We'll have lyrical development sessions

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throwing ideas into the pot,

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but it's very much about

being in the moment

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and being spontaneous.

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We don't want people to

feel hindered, you know,

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if they say, I don't know,

that becomes a song lyric.

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You know, you are validating

everybody's responses

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and this enables people's

creativity to come tumbling out.

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So musical improvisation,

we use small handheld

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tuned and untuned percussion

instruments as the impetus

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for creating rhythms and melodies.

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And then we weave this all

together into something

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that is a high quality

piece of public art.

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In our first project we

actually created an oratorio

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specifically to challenge this

elitist idea of an oratorio

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and who could write and perform it.

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And we had an intergenerational

choir of age five

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I think to 98, a group of 150

people performing that work.

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So co-creativity is often using

present moment improvisation

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to create something

that's much larger scale

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that can be presented publicly.

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But we're also doing co-creation

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around evaluation tools as well.

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I think there's a saying, I'm

not sure of the exact wording,

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nothing for us, without us,

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everything that is being

developed for people

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living with Dementia should

be developed with people

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living with Dementia.

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So this co-creation comes into play

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even with the project

inception for this festival,

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we actually spoke to

people living with Dementia

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about what they wanted.

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- That's fantastic, and

I think it kind of speaks

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to some of what Andy was saying as well.

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We're kind of looking at

involvement and participation

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in the arts through this

kind of lens of citizenship

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as it were, it's creating

spaces where people

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can have their voices heard and yeah,

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feeling listened to within the process

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I think it's incredibly

important in a Dementia context

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because so many decisions

get taken away from people.

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So maybe this is a good point Liv,

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to bring you in and your work with people.

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Could you tell us a

bit about Sounds Better

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as the organisation and

yeah, how you are approaching

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using creativity and music

and arts with people.

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- Yeah, so Sounds Better.

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Grew out of a collective

of freelancers actually.

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And we just wanted a bit

more control over our work

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and you know, being able to set up things

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in our local communities.

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It's really important to

us to really live and work

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and be based and to work with

the people we live alongside.

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So I'm based in Wilshire,

one of my colleagues

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is based in London and we have

projects in our communities.

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So our work with people with Dementia

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is focused in Wilshire.

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And one of the challenges that

we really face in Wilshire

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is that it's a very rural county.

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And there are so many issues around that.

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There's transport, there's

isolation, you know,

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all of these things that

aren't easily rectified.

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Bigger cities obviously

have their own issues too,

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but yeah, the challenge of rural living.

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Well our Dementia work is

based in a little village

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called Downton and it kind of

has echoes of what both Holly

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and Andy were saying is

that we work alongside

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and with people and very

much try and shape the group

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as to what they want to do.

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Music is at its core and it started off

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as a kind of pure music project.

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One where we sang songs

that were familiar,

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did pieces of music that were familiar

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but also wrote our own based

on our own experiences of life

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and our memories.

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So we've got kind of more

than an album's worth it.

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I'd love to get recording, but

at the moment we are working

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towards a mini performance.

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It's very much on a very

small scale, you know,

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nothing compared to

Holly's amazing festivals,

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but we are going to be part

of a Christmas tree festival

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in Salisbury, which is, we

are really exciting for me,

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we're writing our own Christmas carol

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but because our group

also works with people

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with other health conditions,

we are bringing them together.

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They are writing parts of

the Christmas carol together,

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we are gonna have a practise

and then we'll perform together

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as well, so we're connecting people across

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different health conditions,

different communities as well.

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So we see as our music

and our music making

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and it's all participatory.

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And I suppose co-created, I

do shy away from that term

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a little bit, but you

know, we work with people.

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Yeah to try, that's the bridge really.

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The music is the bridge to

bring people to together

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and it's so lovely to hear

about the intergenerational work

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and the opera work as well

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and just see how so many

different forms of music

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and musicing and different styles

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can just bring people together.

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So in essence it's music with

people and music to bridge

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any divides that might be there.

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- That sounds really

wonderful and it's kind of,

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it sparked this kind

of question in my mind.

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We've kind of been talking

about Dementia friendly

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initiatives, whereas some of the language

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that you are all using

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comes down to this kind

of Dementia inclusive,

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so it's beyond the kind

of Dementia friendly

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it seems the work that you're doing.

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So in terms of that rural context,

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could you tell me a bit

more about the kind of,

Speaker:

yeah, how you develop

those sense of connection

Speaker:

through music when people

are kind of not next door

Speaker:

to each other say in terms

of physical location?

Speaker:

- Good question, it's

around experience I think

Speaker:

and life experience and what you find

Speaker:

when you get people in a room together,

Speaker:

no matter where they're

from or where they live,

Speaker:

there's always a commonality

and that's obviously

Speaker:

our humanness but we have experiences

Speaker:

that we can draw on that

are probably similar

Speaker:

to someone sat next to

us, whether that's travel

Speaker:

or whether that's having

a family or throughout

Speaker:

the life course there are

things that connect us.

Speaker:

So it's really trying to draw on those

Speaker:

and draw on our togetherness,

our humanness, our connections

Speaker:

and using that as the basis

to then take that forward

Speaker:

to a group song or piece

of music or production,

Speaker:

whatever that looks like,

whatever the group decides.

Speaker:

So we are kind of going

from individuals to a group,

Speaker:

of really kind of using

that sense of relationship

Speaker:

and relational music making

to bring people together.

Speaker:

- That's really fantastic,

I love the kind of, yeah,

Speaker:

the different ways in which

people can connect without words

Speaker:

as well in those situations

music can provide opportunities

Speaker:

for that self-expression.

Speaker:

So just picking up on that

and maybe it's something

Speaker:

that you are kind of

thinking about more widely

Speaker:

in your role outside of this as the CIC.

Speaker:

I'd love to hear more about

how what you've learned

Speaker:

doing the kind of practical

on the grounds grassroots

Speaker:

music making with people with Dementia

Speaker:

has it kind of impacted on

you in your kind of research

Speaker:

when you've put your research hat on.

Speaker:

- Yes, so my own research is

intergenerational music making

Speaker:

in care homes some as we

know, a huge proportion

Speaker:

of people in care homes

live with Dementia.

Speaker:

So in terms of the impact on research,

Speaker:

I think the way I see it is

that it has to be meaningful

Speaker:

for the people taking part,

the subjects I suppose,

Speaker:

or mine's practise research.

Speaker:

So actually I take

everything from my practise

Speaker:

and it becomes my research

Speaker:

when I'm in that kind of

project context anyway.

Speaker:

So it is things, you know, like ensuring

Speaker:

that everyone understands

what we're doing,

Speaker:

that everyone can participate to a level

Speaker:

that they are comfortable with

Speaker:

if they choose to and if they want to.

Speaker:

The ability to say no and withdraw

Speaker:

absolutely fine with that.

Speaker:

So all this kind of

underpinning values I have

Speaker:

as a practitioner I take

into my research as well.

Speaker:

And I think one of the things

that I find interesting

Speaker:

when people talk about

oh, doing the ethics form

Speaker:

and that kind of thing, well for me

Speaker:

that's absolutely common

sense and it's just, you know,

Speaker:

I have to put it in

slightly different language

Speaker:

for my ethics form, but I'm like,

Speaker:

well this is what I do every

day and it always surprises me

Speaker:

when people aren't working in that way

Speaker:

and that inclusive, in that

mindful way about other people.

Speaker:

So yeah, it's that kind

of taking those values,

Speaker:

those underpinning values of

social justice and inclusion

Speaker:

and yeah really being

intrigued about other people

Speaker:

and then transferring that

exactly into my research.

Speaker:

- Absolutely fascinating

and resonates a lot with

Speaker:

I'm sure both Holly and Andy

as well in terms of the work

Speaker:

that they've been doing.

Speaker:

I'm really interested just

as kind of a broad question

Speaker:

and I can come to you

each in turn about this,

Speaker:

but obviously we've talked

about the kind of the process

Speaker:

of it happening, but I'm

just interested to know

Speaker:

what was your biggest kind of takeaway

Speaker:

at this moment in time

from a recent project

Speaker:

or something like that,

something that's just stood out

Speaker:

to you in terms of the

impacts that this work

Speaker:

can have on people with Dementia?

Speaker:

So maybe Holly if I come to you first,

Speaker:

- Crikey, I've got a takeaway

bag the size of the moon,

Speaker:

but I think it was people's responses

Speaker:

to hearing different types of music

Speaker:

when I worked with

members of the collective,

Speaker:

we took wonderful Egyptian

musician Mina Salama,

Speaker:

brought all his incredible

ouds and ney flutes

Speaker:

and all these sounds that

people might have heard

Speaker:

on film soundtracks,

Speaker:

but they'd never actually

experienced close to.

Speaker:

And to see the delight and intrigue

Speaker:

of predominantly white British group

Speaker:

that we were working

with in hearing sounds

Speaker:

from other cultures and the gospel music,

Speaker:

the Turkish song and just how

that sparked conversations

Speaker:

around intercultural collaboration.

Speaker:

And I think that's

something that our world

Speaker:

needs so much at the moment.

Speaker:

So this open dialogue,

as you were saying Liv,

Speaker:

this sort of interest and appreciation

Speaker:

for each other's cultural differences

Speaker:

as well as our humans similarities.

Speaker:

So I think for me, seeing an audience

Speaker:

that was quite ethnically diverse itself

Speaker:

respond so positively to

something new and intercultural

Speaker:

and having conversations was

really what was fantastic

Speaker:

from our September launch.

Speaker:

- Wow, that's amazing and

really speaks to how we define

Speaker:

community in this day and age

Speaker:

when we have so many different

people, different voices

Speaker:

who can be part of these conversations

Speaker:

and creative activities.

Speaker:

How about you Andy?

Speaker:

What's your kind of biggest

thing that you've taken away

Speaker:

in terms of the impacts?

Speaker:

- The key takeaway you

always take away is,

Speaker:

kind of what you just

said, it's when you witness

Speaker:

the power that music has on an audience

Speaker:

and an audience living with

Dementia is no different

Speaker:

to any of our audience.

Speaker:

They're taken to another

place while that's happening.

Speaker:

I think the biggest takeaway

I've had from putting on events

Speaker:

is getting over...

Speaker:

So we talk about making

things Dementia friendly

Speaker:

and you have all these

things around risk and things

Speaker:

and you have to go through all of this.

Speaker:

Okay so we're gonna have

a quiet space over here,

Speaker:

we're gonna signpost the

toilets, we wanna make sure

Speaker:

this, this, this happens and

if this happens we can do it.

Speaker:

And all these things

are necessary in a way.

Speaker:

But in all my time of doing

Dementia friendly opera

Speaker:

and I did Dementia friendly cinema

Speaker:

in Cardiff for years before.

Speaker:

I've never used any of them.

Speaker:

Once the event starts, people

are taken with the event,

Speaker:

with the music, with the spectacle.

Speaker:

And when an opera is going,

Speaker:

it's very hard not to be taken in.

Speaker:

It's this incredibly loud

powerful thing, it's very visceral

Speaker:

to be part of and all of

our feedback said that was,

Speaker:

this was something new, people

hadn't heard this before

Speaker:

but it didn't matter, it

took them to a new place.

Speaker:

But then when everyone's

left you have all the people

Speaker:

from the venue, all the

people that you've given that,

Speaker:

the sort of swift

Dementia friendly training

Speaker:

and the volunteers and

they're all thinking,

Speaker:

well I didn't need to be here,

well you did need to be here

Speaker:

but you are a safety net

that we never really needed.

Speaker:

And that says something

about why aren't more events

Speaker:

Dementia accessible?

Speaker:

Because when we make these

things Dementia accessible,

Speaker:

we don't really use any of

the Dementia accessible stuff

Speaker:

anyways, it's just sort

of there just in case.

Speaker:

- Yeah, that's really

interesting and I'll tie a bit

Speaker:

into the question that I've

got to kind of round us off

Speaker:

in a few minutes.

Speaker:

But Liv, I was just

wondering if you had any

Speaker:

kind of key takeaways from

well this way of working?

Speaker:

- I think because my work is participatory

Speaker:

rather than focused on a performance,

Speaker:

we don't have an audience in the same way,

Speaker:

although we're all

performers and we're audience

Speaker:

and you know, there's all

kind of underlying theories

Speaker:

around that.

Speaker:

But I kind of just made a

little note for myself there.

Speaker:

But we have different

ways of knowing as people

Speaker:

and we have different

ways of being as well.

Speaker:

And I think the way my work

Speaker:

or you know, any kind of music

related work in Dementia,

Speaker:

you know enables those

different ways of knowing

Speaker:

and different ways of being

to really come to the fore.

Speaker:

And because it's relational as well,

Speaker:

people can relate to

others in a different way

Speaker:

and also it can help reconnect people.

Speaker:

So we have a person living

Dementia and a care partners

Speaker:

or care team, you know,

things can get quite tough

Speaker:

and it is a way of reconnecting them

Speaker:

to kind of get to their

essence and to see people

Speaker:

in either a different

way or to be reminded

Speaker:

of the person that that

they've fell in love with

Speaker:

or that, you know, they grew up with

Speaker:

whatever that relationship is.

Speaker:

And that is so powerful and

it can help to give people

Speaker:

the resilience and the strength

to carry on another week

Speaker:

in a caring role for example.

Speaker:

'Cause that can be quite tough.

Speaker:

So yeah, just that way of

connecting and a different way

Speaker:

of being with someone

else is so important,

Speaker:

particularly with the challenges

Speaker:

that Dementia can bring as well.

Speaker:

- Absolutely, and I think

between the three of you,

Speaker:

you've have such a wealth of kind of,

Speaker:

I guess it's embodied expertise

Speaker:

in terms of how you're

working with these people,

Speaker:

but also the kind of

practical skills, knowledge,

Speaker:

experience to be able to

facilitate things like this.

Speaker:

So I know in the kind of

broader Dementia landscape

Speaker:

there are more and more

initiatives that are looking

Speaker:

to become Dementia friendly,

Dementia inclusive.

Speaker:

So I guess one of my questions

too is to kind of flip it

Speaker:

on its head and maybe

Andy this is something you

Speaker:

might wanna jump in on

in terms of accessibility

Speaker:

in the first instance is,

Speaker:

what makes an arts venue

place space Dementia friendly

Speaker:

for this work to happen in?

Speaker:

What needs to be put in place

to allow for the successes

Speaker:

that you've observed?

Speaker:

- I think most places are accessible

Speaker:

and wheelchair accessible

and everything else.

Speaker:

I think an issue we have

with venues is the assumption

Speaker:

that a person living with

Dementia is living in a care home,

Speaker:

is not able to move around independently

Speaker:

and it forgets all those

stages from diagnosis

Speaker:

through to there is a group of

people living with Dementia,

Speaker:

with advanced Dementia that

perhaps it would be a challenge

Speaker:

to move into a venue

because of mobility issues.

Speaker:

But that's a very small

section of late stage people

Speaker:

living with Dementia and it's

everyone else in between.

Speaker:

And it's not as if people

are coming on their own,

Speaker:

most people coming to events

that are coming with somebody.

Speaker:

We did have people come

to the opera on their own

Speaker:

which was brilliant.

Speaker:

People with early stage from

a diagnosis came on their own,

Speaker:

got themselves to the venue,

came on the tube or the bus

Speaker:

because Dementia is such

a wide spectrum of people,

Speaker:

but you had people that did need help.

Speaker:

And our biggest issue is parking.

Speaker:

You go through all of these

things for Dementia friendly

Speaker:

and the thing that

comes down to is parking

Speaker:

close to the venue and

being able to help people

Speaker:

out with cars.

Speaker:

And that's not to belittle

the idea of making everything,

Speaker:

we should do everything

we can to make things

Speaker:

more Dementia friendly,

Dementia accessible

Speaker:

and the more we can do to do that,

Speaker:

to promote it and everything else.

Speaker:

But the reality of it is any building

Speaker:

can be Dementia friendly,

it just has to be willing

Speaker:

to promote it and

hopefully we get to a part

Speaker:

where don't have to promote it.

Speaker:

And just a cinema is both

a Dementia friendly cinema

Speaker:

and a cinema, a gig venue

is Dementia friendly

Speaker:

and we shouldn't have

to put a special thing

Speaker:

if this is an accessible performance,

Speaker:

it should just be accepted

that it's a performance.

Speaker:

And some people there might have Dementia,

Speaker:

but until we get there it's what we need

Speaker:

but we're gonna, with my

research we're gonna keep,

Speaker:

we've got another event

coming up in February,

Speaker:

which we're gonna do, not

at University of West London

Speaker:

at a separate venue.

Speaker:

Hopefully we have the same things.

Speaker:

We'll put all the Dementia

friendly things in place

Speaker:

to make it safe and to manage risk,

Speaker:

again hopefully we won't need them

Speaker:

and then we could come up

with some sort of blueprint

Speaker:

which will help venues

to be able to do this

Speaker:

and to promote it further.

Speaker:

And it doesn't have to be

opera, it could be anything.

Speaker:

- I think that's fantastic.

Speaker:

And I think you've highlighted

such an important point

Speaker:

in terms of the kind of

the assumptions of others

Speaker:

are often the biggest barriers

in terms of if someone

Speaker:

can or can't access something.

Speaker:

I mean in my own research work,

Speaker:

it tends to be things like automatic taps

Speaker:

and things like that that are the things

Speaker:

that people pick up on

when they're auditing

Speaker:

a space like this.

Speaker:

And so it is actually

the performance itself

Speaker:

being as inclusive as possible

Speaker:

and then just putting

stuff around it to make it.

Speaker:

- Yeah, and there's parts,

I know in my other research,

Speaker:

with my hospital hat

on there's a big thing

Speaker:

to make hospitals Dementia friendly.

Speaker:

There was this big thing to

paint toilet doors yellow

Speaker:

and I was thinking unless

toilet doors are yellow

Speaker:

at their house, why

would yellow mean toilet?

Speaker:

So sometimes we push

things too far and forget

Speaker:

that the toilet's a toilet

and the toilet at the venue

Speaker:

as long as there's a sign saying,

Speaker:

anyway, I'm wittering now.

Speaker:

I'll let you move on to everyone else.

Speaker:

- Not at all, Holly or Liv,

do you have any thoughts

Speaker:

on that?

Speaker:

- It's really interesting

to hear Andy's experience

Speaker:

and obviously recognising

that if we've met one person

Speaker:

living with Dementia, we've met one person

Speaker:

living with Dementia.

Speaker:

I think what we tried to do

with the way we ran the festival

Speaker:

was to curate the experience

so that it wasn't an overload

Speaker:

from the get go.

Speaker:

So as soon as people

arrived we thought about

Speaker:

how to make the space tranquil

Speaker:

and able to orientate

yourself in the space

Speaker:

by having live harp music

just to settle people down.

Speaker:

We curated the flow of the

festival so that people

Speaker:

weren't over faced with choice,

but yet there were choices.

Speaker:

It felt like a festival, you

know, it was quite chaotic

Speaker:

and lively and loud, but we kind of built

Speaker:

the whole scope of the day

so that we curated the event

Speaker:

so that there were quiet

times, there were quiet rooms,

Speaker:

which Andy has mentioned already.

Speaker:

I think one of the most important things,

Speaker:

I don't know if you can see it,

Speaker:

we have these yellow Happy to Help badges

Speaker:

and I think most of making

things Dementia friendly

Speaker:

comes down to people's

awareness of what Dementia

Speaker:

actually is and the fact

that it's an umbrella term

Speaker:

for over a hundred different

diseases of the brain.

Speaker:

And I think it is helpful

for people to know

Speaker:

that people's visuals can be impaired

Speaker:

through certain types of Dementia.

Speaker:

So they might see something

on the floor if the carpets

Speaker:

got some dark flooring,

they may see it as a hole.

Speaker:

So just to have people

on hand who are aware

Speaker:

of these things, who can

guide people and help them

Speaker:

on a human level.

Speaker:

I think Andy's quite right.

Speaker:

Signposting with yellow signs

and all this kind of stuff

Speaker:

is all very well and good,

Speaker:

but what it comes down

to is people guiding

Speaker:

and making people feel

comfortable in the space,

Speaker:

which is what we were very careful to do.

Speaker:

And we did work with the

Bridgewater Halls venue staff.

Speaker:

We created a package that was drawing

Speaker:

from some of the Alzheimer's

Dementia friendly

Speaker:

awareness sessions, but we

also made it music specific.

Speaker:

How can you help somebody

don't tower over them.

Speaker:

You know, consider bringing

yourself to eye level

Speaker:

with somebody, especially

if they're in a wheelchair,

Speaker:

to talk to them rather

than towering over them.

Speaker:

Just these tiny little

details of human interrelation

Speaker:

can make a massive impact

on whether an event

Speaker:

is inclusive or not.

Speaker:

- You put that much better

than me, Holly. Thank you.

Speaker:

- Not at all. I just

paraphrased you wildly (laughs).

Speaker:

- Thank you so much, Liv. Did

you have any thoughts on this?

Speaker:

- I do fully agree with Holly and Andy

Speaker:

and it is just the ways of

being a venue staff really,

Speaker:

because a building is a building

and there are little things

Speaker:

you can do, but lighting or

having it in a particular time

Speaker:

of day that might be more useful.

Speaker:

But actually it is, you know,

Speaker:

the people and how they

support other people

Speaker:

regardless of a diagnosis or not.

Speaker:

And accepting people for who

they are when they walk in.

Speaker:

And not trying to put

expectations, behaviour,

Speaker:

or otherwise onto those people.

Speaker:

I think that's a way to

kind of be Dementia friendly

Speaker:

is to accept that people

with Dementia, you know,

Speaker:

they behave as, or humans do.

Speaker:

We all behave differently

and like accept that

Speaker:

and that's okay.

Speaker:

We can be ourselves in the space,

Speaker:

a welcoming, inclusive space.

Speaker:

- Absolutely. So well said.

Speaker:

And honestly, I could talk

about this for a lot longer

Speaker:

than we have available to us today,

Speaker:

but I just have one final

question about the kind of,

Speaker:

so many of our listeners will

be early career researchers

Speaker:

or perhaps practice-based

researchers like yourself Liv.

Speaker:

And they'll be wanting to

organise events like this

Speaker:

or work with communities.

Speaker:

So I just really wanted

to pick your brains

Speaker:

maybe a one or two sentence answer

Speaker:

about what your hopes are

for research or practise

Speaker:

in this space going forwards.

Speaker:

Holly, maybe I'll start with you.

Speaker:

- I would be really keen to,

Speaker:

for researchers to address the

current under representation

Speaker:

of people from different

ethnic communities

Speaker:

in the research story.

Speaker:

And I think the most important way is,

Speaker:

not to make assumptions,

Speaker:

we've talked about assumptions before.

Speaker:

I think to go out and see good practise,

Speaker:

go and talk to organisations

like Touchstone in Leeds

Speaker:

who are really paving the

way for fantastic provision

Speaker:

for their BME communities.

Speaker:

Go out and observe and listen to,

Speaker:

before you make any decisions

Speaker:

on what your research

questions are going to be.

Speaker:

And really try and listen

to and understand people

Speaker:

who come from different

cultural backgrounds.

Speaker:

- So important. Thank you Holly and Liv.

Speaker:

- Good question, I think for

me as a community musician

Speaker:

practise researcher, it would

be about how community music

Speaker:

works in this space.

Speaker:

So we have a lot of,

what are the outcomes,

Speaker:

what are the benefits, yada yada, yada.

Speaker:

What actually happens, you

know, we can't articulate,

Speaker:

we're not articulating that in research

Speaker:

and it's not about, oh yes,

Speaker:

it's this welcome song

and that goodbye song.

Speaker:

You know, what are those

processes, what actually happens?

Speaker:

What underpins our sessions

with people with Dementia?

Speaker:

So I'm very intrigued about that.

Speaker:

What happens in rooms to get

to these outcomes, benefits.

Speaker:

So if anyone else wants to

help me take on that mantle,

Speaker:

let's chat.

Speaker:

- Yeah, that's absolutely

music to my ears Liv.

Speaker:

Andy, what would you say about this?

Speaker:

- I mean, if I was speaking directly

Speaker:

to early career researchers,

if you've got an idea

Speaker:

for an event, my advice would

be go out there and do it.

Speaker:

Go and speak to the local

theatre, the local cinema

Speaker:

or local bar.

Speaker:

Go and speak to local groups

of people living with Dementia

Speaker:

and put on the event.

Speaker:

Just go and do it.

Speaker:

This is your chances to

almost do something outside

Speaker:

of the boundaries and rigours of academia.

Speaker:

You don't need peer review for

this, you don't need to apply

Speaker:

for funding that you know,

even though your idea

Speaker:

is brilliant, only 10% of

people are going to get that.

Speaker:

And all of those irritants,

Speaker:

sort of enhance early career academia,

Speaker:

you don't need your

supervisor's permission.

Speaker:

You just need to think

of what you want to do,

Speaker:

and then go out there and set it up.

Speaker:

And it might be something that

you want to do that you think

Speaker:

of a people will enjoy

and then just be ready

Speaker:

that they might not enjoy it.

Speaker:

Or it might be something

that you want to co-produce

Speaker:

with people living with Dementia

Speaker:

and you can go and speak to them.

Speaker:

And then all those

things that we talk about

Speaker:

as being really difficult,

of building up networks

Speaker:

of diverse people living with Dementia,

Speaker:

you'll have found a shortcut to do it,

Speaker:

because you've had an audience,

you've spoken to them,

Speaker:

you know what they like.

Speaker:

It will not only help you

and it will help people

Speaker:

living with Dementia, but

it will help your research,

Speaker:

it will help your networks,

it helps everybody.

Speaker:

So go out and do it. Do an

event. Everyone should do it.

Speaker:

- Oh, well, hopefully we've

had some people very inspired

Speaker:

by what's been said during this episode

Speaker:

and we'll have some

more events popping up,

Speaker:

cropping up in the future.

Speaker:

I'll certainly be keeping

an eye out for them myself.

Speaker:

I'm afraid that's all

we have time for today.

Speaker:

I really enjoyed today's discussion

Speaker:

and if you wanna find out more,

Speaker:

you can have a look at the

Dementia Researcher website

Speaker:

where you'll find a full

transcript and biographies

Speaker:

of all our guests blogs

and much more on the topic.

Speaker:

So I'd just like to extend my thanks

Speaker:

to our incredible guests today,

Liv McLennan, Holly Marland,

Speaker:

and Andy Northcott.

Speaker:

And I'm Robyn Dowlen,

and you've been listening

Speaker:

to the Dementia Researcher Podcast.

Speaker:

- [Voice Over] The

Dementia Researcher Podcast

Speaker:

was brought to you by

University College London.

Speaker:

With generous funding from

the UK National Institute

Speaker:

for Health Research,

Alzheimer's Research UK,

Speaker:

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Alzheimer's Association,

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