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Harmonising Minds Dementia Friendly Music & Arts · Dementia Researcher Vodcast

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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 2017,
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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).
14:34
- 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,
16:25
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
16:57
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
17:37
in our local communities.
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It's really important to us to really live and work
17:42
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.
18:06
And there are so many issues around that.
18:09
There's transport, there's isolation, you know,
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all of these things that aren't easily rectified.
18:15
Bigger cities obviously have their own issues too,
18:18
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
18:38
as to what they want to do.
18:42
Music is at its core and it started off
18:44
as a kind of pure music project.
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One where we sang songs that were familiar,
18:50
did pieces of music that were familiar
18:51
but also wrote our own based on our own experiences of life
18:56
and our memories.
18:58
So we've got kind of more than an album's worth it.
19:00
I'd love to get recording, but at the moment we are working
19:06
towards a mini performance.
19:09
It's very much on a very small scale, you know,
19:11
nothing compared to Holly's amazing festivals,
19:14
but we are going to be part of a Christmas tree festival
19:18
in Salisbury, which is, we are really exciting for me,
19:21
we're writing our own Christmas carol
19:23
but because our group also works with people
19:26
with other health conditions, we are bringing them together.
19:29
They are writing parts of the Christmas carol together,
19:32
we are gonna have a practise and then we'll perform together
19:35
as well, so we're connecting people across
19:37
different health conditions, different communities as well.
19:41
So we see as our music and our music making
19:44
and it's all participatory.
19:45
And I suppose co-created, I do shy away from that term
19:48
a little bit, but you know, we work with people.
19:53
Yeah to try, that's the bridge really.
19:54
The music is the bridge to bring people to together
19:57
and it's so lovely to hear about the intergenerational work
19:59
and the opera work as well
20:01
and just see how so many different forms of music
20:04
and musicing and different styles
20:06
can just bring people together.
20:08
So in essence it's music with people and music to bridge
20:13
any divides that might be there.
20:15
- That sounds really wonderful and it's kind of,
20:18
it sparked this kind of question in my mind.
20:20
We've kind of been talking about Dementia friendly
20:23
initiatives, whereas some of the language
20:25
that you are all using
20:26
comes down to this kind of Dementia inclusive,
20:30
so it's beyond the kind of Dementia friendly
20:33
it seems the work that you're doing.
20:35
So in terms of that rural context,
20:38
could you tell me a bit more about the kind of,
20:41
yeah, how you develop those sense of connection
20:44
through music when people are kind of not next door
20:48
to each other say in terms of physical location?
20:51
- Good question, it's around experience I think
20:53
and life experience and what you find
20:57
when you get people in a room together,
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no matter where they're from or where they live,
21:00
there's always a commonality and that's obviously
21:03
our humanness but we have experiences
21:06
that we can draw on that are probably similar
21:08
to someone sat next to us, whether that's travel
21:11
or whether that's having a family or throughout
21:14
the life course there are things that connect us.
21:17
So it's really trying to draw on those
21:18
and draw on our togetherness, our humanness, our connections
21:23
and using that as the basis to then take that forward
21:27
to a group song or piece of music or production,
21:30
whatever that looks like, whatever the group decides.
21:34
So we are kind of going from individuals to a group,
21:37
of really kind of using that sense of relationship
21:42
and relational music making to bring people together.
21:46
- That's really fantastic, I love the kind of, yeah,
21:48
the different ways in which people can connect without words
21:52
as well in those situations music can provide opportunities
21:55
for that self-expression.
21:58
So just picking up on that and maybe it's something
22:00
that you are kind of thinking about more widely
22:02
in your role outside of this as the CIC.
22:07
I'd love to hear more about how what you've learned
22:11
doing the kind of practical on the grounds grassroots
22:14
music making with people with Dementia
22:16
has it kind of impacted on you in your kind of research
22:19
when you've put your research hat on.
22:21
- Yes, so my own research is intergenerational music making
22:26
in care homes some as we know, a huge proportion
22:29
of people in care homes live with Dementia.
22:34
So in terms of the impact on research,
22:38
I think the way I see it is that it has to be meaningful
22:44
for the people taking part, the subjects I suppose,
22:48
or mine's practise research.
22:50
So actually I take everything from my practise
22:52
and it becomes my research
22:54
when I'm in that kind of project context anyway.
22:57
So it is things, you know, like ensuring
23:00
that everyone understands what we're doing,
23:02
that everyone can participate to a level
23:05
that they are comfortable with
23:07
if they choose to and if they want to.
23:09
The ability to say no and withdraw
23:11
absolutely fine with that.
23:14
So all this kind of underpinning values I have
23:16
as a practitioner I take into my research as well.
23:20
And I think one of the things that I find interesting
23:23
when people talk about oh, doing the ethics form
23:26
and that kind of thing, well for me
23:28
that's absolutely common sense and it's just, you know,
23:31
I have to put it in slightly different language
23:33
for my ethics form, but I'm like,
23:34
well this is what I do every day and it always surprises me
23:37
when people aren't working in that way
23:39
and that inclusive, in that mindful way about other people.
23:45
So yeah, it's that kind of taking those values,
23:48
those underpinning values of social justice and inclusion
23:52
and yeah really being intrigued about other people
23:57
and then transferring that exactly into my research.
24:00
- Absolutely fascinating and resonates a lot with
24:03
I'm sure both Holly and Andy as well in terms of the work
24:07
that they've been doing.
24:09
I'm really interested just as kind of a broad question
24:13
and I can come to you each in turn about this,
24:16
but obviously we've talked about the kind of the process
24:19
of it happening, but I'm just interested to know
24:21
what was your biggest kind of takeaway
24:23
at this moment in time from a recent project
24:26
or something like that, something that's just stood out
24:28
to you in terms of the impacts that this work
24:31
can have on people with Dementia?
24:33
So maybe Holly if I come to you first,
24:36
- Crikey, I've got a takeaway bag the size of the moon,
24:40
but I think it was people's responses
24:44
to hearing different types of music
24:47
when I worked with members of the collective,
24:49
we took wonderful Egyptian musician Mina Salama,
24:53
brought all his incredible ouds and ney flutes
24:56
and all these sounds that people might have heard
24:59
on film soundtracks,
25:01
but they'd never actually experienced close to.
25:03
And to see the delight and intrigue
25:05
of predominantly white British group
25:07
that we were working with in hearing sounds
25:10
from other cultures and the gospel music,
25:12
the Turkish song and just how that sparked conversations
25:17
around intercultural collaboration.
25:20
And I think that's something that our world
25:22
needs so much at the moment.
25:23
So this open dialogue, as you were saying Liv,
25:26
this sort of interest and appreciation
25:29
for each other's cultural differences
25:32
as well as our humans similarities.
25:34
So I think for me, seeing an audience
25:38
that was quite ethnically diverse itself
25:40
respond so positively to something new and intercultural
25:44
and having conversations was really what was fantastic
25:48
from our September launch.
25:50
- Wow, that's amazing and really speaks to how we define
25:53
community in this day and age
25:55
when we have so many different people, different voices
25:57
who can be part of these conversations
26:00
and creative activities.
26:02
How about you Andy?
26:03
What's your kind of biggest thing that you've taken away
26:06
in terms of the impacts?
26:08
- The key takeaway you always take away is,
26:10
kind of what you just said, it's when you witness
26:13
the power that music has on an audience
26:15
and an audience living with Dementia is no different
26:18
to any of our audience.
26:20
They're taken to another place while that's happening.
26:23
I think the biggest takeaway I've had from putting on events
26:28
is getting over...
26:30
So we talk about making things Dementia friendly
26:33
and you have all these things around risk and things
26:36
and you have to go through all of this.
26:37
Okay so we're gonna have a quiet space over here,
26:39
we're gonna signpost the toilets, we wanna make sure
26:41
this, this, this happens and if this happens we can do it.
26:43
And all these things are necessary in a way.
26:48
But in all my time of doing Dementia friendly opera
26:50
and I did Dementia friendly cinema
26:52
in Cardiff for years before.
26:54
I've never used any of them.
26:55
Once the event starts, people are taken with the event,
26:58
with the music, with the spectacle.
27:00
And when an opera is going,
27:01
it's very hard not to be taken in.
27:03
It's this incredibly loud powerful thing, it's very visceral
27:07
to be part of and all of our feedback said that was,
27:10
this was something new, people hadn't heard this before
27:12
but it didn't matter, it took them to a new place.
27:15
But then when everyone's left you have all the people
27:17
from the venue, all the people that you've given that,
27:19
the sort of swift Dementia friendly training
27:22
and the volunteers and they're all thinking,
27:24
well I didn't need to be here, well you did need to be here
27:27
but you are a safety net that we never really needed.
27:31
And that says something about why aren't more events
27:35
Dementia accessible?
27:36
Because when we make these things Dementia accessible,
27:38
we don't really use any of the Dementia accessible stuff
27:40
anyways, it's just sort of there just in case.
27:43
- Yeah, that's really interesting and I'll tie a bit
27:45
into the question that I've got to kind of round us off
27:48
in a few minutes.
27:49
But Liv, I was just wondering if you had any
27:51
kind of key takeaways from well this way of working?
27:55
- I think because my work is participatory
27:58
rather than focused on a performance,
28:00
we don't have an audience in the same way,
28:02
although we're all performers and we're audience
28:04
and you know, there's all kind of underlying theories
28:07
around that.
28:08
But I kind of just made a little note for myself there.
28:11
But we have different ways of knowing as people
28:15
and we have different ways of being as well.
28:17
And I think the way my work
28:19
or you know, any kind of music related work in Dementia,
28:23
you know enables those different ways of knowing
28:26
and different ways of being to really come to the fore.
28:28
And because it's relational as well,
28:30
people can relate to others in a different way
28:35
and also it can help reconnect people.
28:37
So we have a person living Dementia and a care partners
28:40
or care team, you know, things can get quite tough
28:44
and it is a way of reconnecting them
28:46
to kind of get to their essence and to see people
28:50
in either a different way or to be reminded
28:52
of the person that that they've fell in love with
28:55
or that, you know, they grew up with
28:57
whatever that relationship is.
28:59
And that is so powerful and it can help to give people
29:03
the resilience and the strength to carry on another week
29:08
in a caring role for example.
29:10
'Cause that can be quite tough.
29:13
So yeah, just that way of connecting and a different way
29:16
of being with someone else is so important,
29:19
particularly with the challenges
29:21
that Dementia can bring as well.
29:24
- Absolutely, and I think between the three of you,
29:27
you've have such a wealth of kind of,
29:30
I guess it's embodied expertise
29:32
in terms of how you're working with these people,
29:34
but also the kind of practical skills, knowledge,
29:38
experience to be able to facilitate things like this.
29:41
So I know in the kind of broader Dementia landscape
29:45
there are more and more initiatives that are looking
29:47
to become Dementia friendly, Dementia inclusive.
29:50
So I guess one of my questions too is to kind of flip it
29:53
on its head and maybe Andy this is something you
29:55
might wanna jump in on in terms of accessibility
29:58
in the first instance is,
29:59
what makes an arts venue place space Dementia friendly
30:04
for this work to happen in?
30:06
What needs to be put in place to allow for the successes
30:10
that you've observed?
30:11
- I think most places are accessible
30:14
and wheelchair accessible and everything else.
30:17
I think an issue we have with venues is the assumption
30:20
that a person living with Dementia is living in a care home,
30:26
is not able to move around independently
30:29
and it forgets all those stages from diagnosis
30:32
through to there is a group of people living with Dementia,
30:35
with advanced Dementia that perhaps it would be a challenge
30:38
to move into a venue because of mobility issues.
30:42
But that's a very small section of late stage people
30:45
living with Dementia and it's everyone else in between.
30:47
And it's not as if people are coming on their own,
30:50
most people coming to events that are coming with somebody.
30:53
We did have people come to the opera on their own
30:55
which was brilliant.
30:56
People with early stage from a diagnosis came on their own,
30:59
got themselves to the venue, came on the tube or the bus
31:01
because Dementia is such a wide spectrum of people,
31:05
but you had people that did need help.
31:07
And our biggest issue is parking.
31:09
You go through all of these things for Dementia friendly
31:11
and the thing that comes down to is parking
31:13
close to the venue and being able to help people
31:16
out with cars.
31:18
And that's not to belittle the idea of making everything,
31:22
we should do everything we can to make things
31:23
more Dementia friendly, Dementia accessible
31:25
and the more we can do to do that,
31:26
to promote it and everything else.
31:28
But the reality of it is any building
31:30
can be Dementia friendly, it just has to be willing
31:33
to promote it and hopefully we get to a part
31:35
where don't have to promote it.
31:36
And just a cinema is both a Dementia friendly cinema
31:40
and a cinema, a gig venue is Dementia friendly
31:44
and we shouldn't have to put a special thing
31:45
if this is an accessible performance,
31:47
it should just be accepted that it's a performance.
31:49
And some people there might have Dementia,
31:51
but until we get there it's what we need
31:55
but we're gonna, with my research we're gonna keep,
31:58
we've got another event coming up in February,
32:00
which we're gonna do, not at University of West London
32:03
at a separate venue.
32:04
Hopefully we have the same things.
32:05
We'll put all the Dementia friendly things in place
32:08
to make it safe and to manage risk,
32:10
again hopefully we won't need them
32:12
and then we could come up with some sort of blueprint
32:13
which will help venues to be able to do this
32:16
and to promote it further.
32:17
And it doesn't have to be opera, it could be anything.
32:21
- I think that's fantastic.
32:22
And I think you've highlighted such an important point
32:24
in terms of the kind of the assumptions of others
32:28
are often the biggest barriers in terms of if someone
32:31
can or can't access something.
32:33
I mean in my own research work,
32:36
it tends to be things like automatic taps
32:41
and things like that that are the things
32:42
that people pick up on when they're auditing
32:44
a space like this.
32:46
And so it is actually the performance itself
32:48
being as inclusive as possible
32:50
and then just putting stuff around it to make it.
32:52
- Yeah, and there's parts, I know in my other research,
32:55
with my hospital hat on there's a big thing
32:57
to make hospitals Dementia friendly.
33:00
There was this big thing to paint toilet doors yellow
33:03
and I was thinking unless toilet doors are yellow
33:04
at their house, why would yellow mean toilet?
33:06
So sometimes we push things too far and forget
33:09
that the toilet's a toilet and the toilet at the venue
33:12
as long as there's a sign saying,
33:13
anyway, I'm wittering now.
33:14
I'll let you move on to everyone else.
33:16
- Not at all, Holly or Liv, do you have any thoughts
33:19
on that?
33:20
- It's really interesting to hear Andy's experience
33:23
and obviously recognising that if we've met one person
33:26
living with Dementia, we've met one person
33:28
living with Dementia.
33:30
I think what we tried to do with the way we ran the festival
33:33
was to curate the experience so that it wasn't an overload
33:37
from the get go.
33:38
So as soon as people arrived we thought about
33:40
how to make the space tranquil
33:43
and able to orientate yourself in the space
33:47
by having live harp music just to settle people down.
33:51
We curated the flow of the festival so that people
33:55
weren't over faced with choice, but yet there were choices.
33:58
It felt like a festival, you know, it was quite chaotic
34:02
and lively and loud, but we kind of built
34:05
the whole scope of the day so that we curated the event
34:08
so that there were quiet times, there were quiet rooms,
34:11
which Andy has mentioned already.
34:13
I think one of the most important things,
34:14
I don't know if you can see it,
34:16
we have these yellow Happy to Help badges
34:19
and I think most of making things Dementia friendly
34:21
comes down to people's awareness of what Dementia
34:25
actually is and the fact that it's an umbrella term
34:27
for over a hundred different diseases of the brain.
34:30
And I think it is helpful for people to know
34:32
that people's visuals can be impaired
34:37
through certain types of Dementia.
34:38
So they might see something on the floor if the carpets
34:42
got some dark flooring, they may see it as a hole.
34:45
So just to have people on hand who are aware
34:48
of these things, who can guide people and help them
34:52
on a human level.
34:54
I think Andy's quite right.
34:55
Signposting with yellow signs and all this kind of stuff
34:57
is all very well and good,
34:58
but what it comes down to is people guiding
35:02
and making people feel comfortable in the space,
35:06
which is what we were very careful to do.
35:08
And we did work with the Bridgewater Halls venue staff.
35:12
We created a package that was drawing
35:15
from some of the Alzheimer's Dementia friendly
35:19
awareness sessions, but we also made it music specific.
35:22
How can you help somebody don't tower over them.
35:26
You know, consider bringing yourself to eye level
35:28
with somebody, especially if they're in a wheelchair,
35:31
to talk to them rather than towering over them.
35:34
Just these tiny little details of human interrelation
35:37
can make a massive impact on whether an event
35:40
is inclusive or not.
35:42
- You put that much better than me, Holly. Thank you.
35:44
- Not at all. I just paraphrased you wildly (laughs).
35:49
- Thank you so much, Liv. Did you have any thoughts on this?
35:52
- I do fully agree with Holly and Andy
35:54
and it is just the ways of being a venue staff really,
35:58
because a building is a building and there are little things
36:01
you can do, but lighting or having it in a particular time
36:05
of day that might be more useful.
36:06
But actually it is, you know,
36:09
the people and how they support other people
36:12
regardless of a diagnosis or not.
36:14
And accepting people for who they are when they walk in.
36:17
And not trying to put expectations, behaviour,
36:21
or otherwise onto those people.
36:22
I think that's a way to kind of be Dementia friendly
36:25
is to accept that people with Dementia, you know,
36:30
they behave as, or humans do.
36:31
We all behave differently and like accept that
36:34
and that's okay.
36:35
We can be ourselves in the space,
36:37
a welcoming, inclusive space.
36:39
- Absolutely. So well said.
36:41
And honestly, I could talk about this for a lot longer
36:45
than we have available to us today,
36:47
but I just have one final question about the kind of,
36:52
so many of our listeners will be early career researchers
36:56
or perhaps practice-based researchers like yourself Liv.
37:00
And they'll be wanting to organise events like this
37:03
or work with communities.
37:05
So I just really wanted to pick your brains
37:08
maybe a one or two sentence answer
37:10
about what your hopes are for research or practise
37:14
in this space going forwards.
37:16
Holly, maybe I'll start with you.
37:19
- I would be really keen to,
37:22
for researchers to address the current under representation
37:25
of people from different ethnic communities
37:27
in the research story.
37:30
And I think the most important way is,
37:32
not to make assumptions,
37:33
we've talked about assumptions before.
37:36
I think to go out and see good practise,
37:39
go and talk to organisations like Touchstone in Leeds
37:42
who are really paving the way for fantastic provision
37:46
for their BME communities.
37:48
Go out and observe and listen to,
37:51
before you make any decisions
37:54
on what your research questions are going to be.
37:56
And really try and listen to and understand people
37:59
who come from different cultural backgrounds.
38:02
- So important. Thank you Holly and Liv.
38:05
- Good question, I think for me as a community musician
38:11
practise researcher, it would be about how community music
38:17
works in this space.
38:18
So we have a lot of, what are the outcomes,
38:21
what are the benefits, yada yada, yada.
38:23
What actually happens, you know, we can't articulate,
38:27
we're not articulating that in research
38:30
and it's not about, oh yes,
38:31
it's this welcome song and that goodbye song.
38:34
You know, what are those processes, what actually happens?
38:37
What underpins our sessions with people with Dementia?
38:40
So I'm very intrigued about that.
38:42
What happens in rooms to get to these outcomes, benefits.
38:47
So if anyone else wants to help me take on that mantle,
38:50
let's chat.
38:51
- Yeah, that's absolutely music to my ears Liv.
38:55
Andy, what would you say about this?
38:57
- I mean, if I was speaking directly
38:59
to early career researchers, if you've got an idea
39:02
for an event, my advice would be go out there and do it.
39:05
Go and speak to the local theatre, the local cinema
39:09
or local bar.
39:09
Go and speak to local groups of people living with Dementia
39:13
and put on the event.
39:14
Just go and do it.
39:15
This is your chances to almost do something outside
39:18
of the boundaries and rigours of academia.
39:21
You don't need peer review for this, you don't need to apply
39:24
for funding that you know, even though your idea
39:26
is brilliant, only 10% of people are going to get that.
39:28
And all of those irritants,
39:32
sort of enhance early career academia,
39:35
you don't need your supervisor's permission.
39:37
You just need to think of what you want to do,
39:40
and then go out there and set it up.
39:41
And it might be something that you want to do that you think
39:43
of a people will enjoy and then just be ready
39:45
that they might not enjoy it.
39:47
Or it might be something that you want to co-produce
39:48
with people living with Dementia
39:50
and you can go and speak to them.
39:51
And then all those things that we talk about
39:53
as being really difficult, of building up networks
39:55
of diverse people living with Dementia,
39:58
you'll have found a shortcut to do it,
39:59
because you've had an audience, you've spoken to them,
40:01
you know what they like.
40:02
It will not only help you and it will help people
40:05
living with Dementia, but it will help your research,
40:07
it will help your networks, it helps everybody.
40:09
So go out and do it. Do an event. Everyone should do it.
40:11
- Oh, well, hopefully we've had some people very inspired
40:15
by what's been said during this episode
40:17
and we'll have some more events popping up,
40:21
cropping up in the future.
40:22
I'll certainly be keeping an eye out for them myself.
40:25
I'm afraid that's all we have time for today.
40:28
I really enjoyed today's discussion
40:33
and if you wanna find out more,
40:36
you can have a look at the Dementia Researcher website
40:39
where you'll find a full transcript and biographies
40:41
of all our guests blogs and much more on the topic.
40:45
So I'd just like to extend my thanks
40:47
to our incredible guests today, Liv McLennan, Holly Marland,
40:51
and Andy Northcott.
40:53
And I'm Robyn Dowlen, and you've been listening
40:56
to the Dementia Researcher Podcast.
40:59
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41:01
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41:03
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41:06
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41:09
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41:12
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41:14
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