Podcast – Music and Dementia

Voice Over:

Welcome to the NIHR Dementia Researcher podcast, brought to you by DementiaResearcher.NIHR.ac.uk. In association with Alzheimer’s Research UK and Alzheimer’s Society, supporting early career dementia researchers across the world.

Megan Calvert-O’Hare:

Hello everyone and welcome to another Dementia Researcher podcast. Thanks for joining us today. We’re still in lockdown, so this is being recorded in our respective houses, spare rooms, sheds, et cetera. We’re using Zoom, password protected, so hopefully no naked people will appear. I am delighted to be joined today by three panellists who are all passionate about the benefits that music can bring to people living with dementia.

I would like to introduce Grace Meadows, who is a musician, music therapist and program director for the Music for Dementia 2020 campaign. Pre-COVID she regularly played contrabassoon and bassoon with orchestras across London. I’ve made a little note here that I’ve heard of the bassoon, I think mainly from Peter and the Wolf, but I have to say I’ve never heard of the contrabassoon. Is it bigger? Smaller?

Grace Meadows:

Yeah, it is, it’s bigger. Think of it as the equivalent of the double bass for the woodwind section.

Megan Calvert-O’Hare:

Okay, so-

Grace Meadows:

The big grandfather of the woodwind section.

Megan Calvert-O’Hare:

Okay, so maybe it’s the contrabassoon that plays the grandfather in Peter and the Wolf, maybe?

Grace Meadows:

I think it’s just the bassoon at that point, but they often double up.

Megan Calvert-O’Hare:

Okay.

Grace Meadows:

For that extra weight.

Megan Calvert-O’Hare:

Okay. Then next we have Robyn Dowlen, who is a postdoc at The Centre for Cultural Value, a research centre which aims to enhance understanding of the difference arts and culture make to people’s lives and society by making research more accessible. Robyn’s PhD focused on understanding the in-the-moment benefits of music making for people living with dementia. Hello Robyn, you’ve joined us before on a couple of podcasts, I think.

Dr Robyn Dowlen:

Yeah, a couple of podcasts in the past on vivas and fostering good relationships with PhD supervisors.

Megan Calvert-O’Hare:

Oh yeah. But you did them in the nice studio with-

Dr Robyn Dowlen:

I did, yes.

Megan Calvert-O’Hare:

Finally, we have Emilie Brotherhood, who also has done a podcast with us before, discussing setting up the Rare Dementia Support study, which I think is still our most listened to podcast, so that’s good. She’s a research fellow and part time PhD student at UCL. So hello to all of you.

Emilie Brotherhood:

Hi.

Dr Robyn Dowlen:

Hello.

Megan Calvert-O’Hare:

So let’s start with Grace and maybe ask you about the overview of your campaign and what you’re trying to achieve with it.

Grace Meadows:

Absolutely. So Music for Dementia is a campaign to make music available for people living with dementia. The reason why we’re doing this campaign is because we believe that music should be a right in dementia care and that it should be free at the point of access. We believe this because we don’t have a pharmacological answer to dementia, as we all know, and I certainly personally feel that we have an obligation, moral and social really, to support the quality of life for people living with dementia and their carers to live as well as they can. When we have this thing that surrounds us and is part of our daily lives called music, around us in the ways that we have, it makes really good sense to be using that music to enhance quality of life. We know, research has shown, and we’re going to talk about it in great detail I’m sure, the role that music has to play in improving the quality of life of people with dementia.

In order for us to make music a part of dementia care, we as a campaign have to raise awareness and understanding around the role of music in dementia care, why it’s so fundamentally important and what we can all do, all the different roles we can each play in order to help make that happen.

Megan Calvert-O’Hare:

Okay. So is this from … what sort of stage are you using the music and is your campaign aimed at? Is it care homes? Or is it much earlier in the diagnosis pathway, so right after diagnosis?

Grace Meadows:

We believe that music can be used throughout the dementia journey, so from somebody living well to receiving their diagnosis, right through to end of life care. The thing for us is that there is no right way, per se, with music, it’s about what matters to the individual person. So what works for one person at one point in their journey, might not be the same for another person at the same point in their journey, but it could be similar to another point in someone’s journey. It’s really about the personalized, individualized approach to using music. Whether that’s a playlist, music therapy, working with live musicians, it really is about what’s right for that person.

We talk very much about making music with people, rather than doing it to people. That really, for me, is the central point. Before anyone starts thinking about music, you kind of need to get into that space. This isn’t something you do to people, you’ve got to think about how you use music to be with people. Fundamentally, music is there to connect us and we know that dementia is the greatest isolator and biggest disconnector. If we can be using music to help people connect, then we’ve got to do that in the right way that works for the person living with dementia.

Megan Calvert-O’Hare:

So I guess that leads on quite nicely to the next question, which is, how does music actually work for someone living with dementia and what does that sound and look like? I guess you’re not talking about just turning on the radio and saying, “Here’s a song in the background.”

Grace Meadows:

No, no, absolutely. That’s because music’s so much more complicated and complex in terms of how we process it. We all have an emotional response to music, we all have a physiological response, we have the social response. We know that … Emilie and Robyn will be able to speak to this much more, but we know that, in terms of how the brain processes music, it happens across the whole brain and not just in one region. It’s so amazing the way in which memories get made in association with musical experiences. That’s partly because, when we listen to music in our formative years, so that gap between 10 and 30, so many big life events are happening for us and often we’re listening to music at quite a high frequency, so we’re listening to the same songs over and over again. I’m sure you can listen, can think back to albums that you might have listened to at moments when you were in a relationship with somebody, or a big life event and that music really embeds itself in us in many different ways.

In terms of what it might look and feel like, to go back to that point about personalization, it’s really about finding out what music matters to the person that you’re working with and then thinking about how might they best experience that? How might they want to experience that? So we say the right music at the right time in the right way delivered by the right person, because you could play me my favourite music and I might really enjoy it, but actually I don’t like how it’s been delivered. I don’t want to listen to it through the radio, I want to be making the music, if you see what I mean. There’s all sorts of access issues as well in terms of how people experience their music. It’s all about having that conversation as best you can with the person living with dementia and their carers around what matters to that person and how that music can then be experienced.

Megan Calvert-O’Hare:

You mentioned twice about actually making music with the person, or being with the person talking about music. Do you actually mean making music, sitting down and having a drumming class? I don’t know, does it work for people who aren’t musical?

Grace Meadows:

Absolutely. There is no prerequisite to being musical in order to benefit from it and I think we can all speak to that, to some degree, in terms of we can hear our favourite music and we have a very immediate response to it. It’s not about being technically trained. We all have this innate capacity to respond to music because actually we’re fundamentally musical beings. We have that preverbal babble which is often very, very musical. You hear mothers and infants sharing that babble together and it’s really beautiful to watch and listen to. They’re bonding and they’re making connections and really that’s what music continues to do for us throughout our lives.

In terms of the music, making music with somebody, it can be a drumming session, as you say, but it also could be just humming a song and building a conversation, that might be a musical conversation. It could be that one person hums to the other and that is their conversation, but it’s done through the medium of music. It’s that ability to create communication through the musical connection. There’s a whole way, there’s a whole broad church really, in terms of how you might experience music. I think it’s a real joy for anyone who is a music practitioner who’s going in to work with people living with dementia to find out that somebody has got musical skills, because then you make music in a different way to people who perhaps have never touched an instrument. It’s a different type of musical experience that’s being offered, so you always have to be prepared as a music practitioner, I think, to expect the unexpected in terms of what you might do with somebody musically.

Megan Calvert-O’Hare:

Yeah. Because you mentioned about the formative years, between 10 and 30, let’s say 40 for people who are slightly older, with lots of memories associated with music. Your school disco, doing your GCSEs, university, we’ve all got that song. But also you mentioned way back, children, nursery rhymes are just … I don’t know, there’s something, as soon as I had my child I remembered all the nursery rhymes from when I was younger and they’re just so simple and easy to sing along and you can see the child just reacting to how you’re singing to them. I wonder whether you ever do nursery rhymes, is that too simple? Too far back?

Grace Meadows:

Well I think it’s very much about the context and the choice of music is something, it really can be a very sensitive issue. Again, it’s all about what the music might stir up in somebody. So for some people, those nursery rhymes will bring back wonderful, warm memories of special moments with a parent, or with families, whereas for others, they may have a different connotation. We’d always try and think carefully. Also, we encourage practitioners to be thinking about not infantilizing people through music. Some nursery songs really do kind of transcend age, if you like, whereas others very much place children in that nursery age context.

Megan Calvert-O’Hare:

Okay. So maybe Emilie we can talk to you now, because you’re not directly involved in this campaign, are you? But can you maybe tell us about your background in this field and maybe the MFD 2020 survey, which I didn’t quite work out what that was. Oh, the Music for Dementia, Music for Dementia.

Emilie Brotherhood:

Thanks, Megan. Sorry, that was my fault for using acronyms, that’ll teach me. Yes, I am a research psychologist at Dementia Research Centre at the University College, London. I’m not directly involved with Music for Dementia, although Grace and I are currently working on this survey, which is how we’re trying to survey a wide range of professionals and carers and people living with dementia themselves to really establish the kinds of research questions that we should be, and to gain consensus about the kind of questions that we should be asking in research. I think there’s lots of pockets of things going on, but as always, the problem with so many things going on and so many spinning plates, actually communicating those research efforts to each other, I think, as institutions and those cultural institutions get involved as well, which is fantastic, is a real challenge.

So the idea behind this Music for Dementia 2020 survey is to put that out this year, but co-design it with carers and people living with dementia and professionals and experts in the field, to be able to kind of draw together those questions shortly and then distribute them and hopefully get a wide range of responses. So that’s my association really with Music for Dementia and working with Grace so far.

In terms of my own research, I’m currently investigating physiological responses to music in people living with diagnoses of dementia, so this very much picks up on what Grace was saying about trying to ascertain those personalized music choices, but also being mindful that, for some people either with language variants of Alzheimer’s disease and/or in the later stages of dementia, often communicating their preferences via language can be particularly difficult. So the way that my research is trying to tackle this challenge is by measuring physiological responses to music in people at early stages of dementia, who can still communicate what they like and what they know. I’m looking at subtle changes in, for example, the size of the pupil, in their galvanic skin response and their heart rate and seeing if those map accurately onto what they’re telling me that they like and know about pieces of music as I play them to them.

If we find that those physiological responses very tightly map onto those subjective reports with their experience of music and that we can show different profiles, if you like, of what the heart rate’s doing when, for example, a person hears a song they’re familiar with versus a song they’re unfamiliar with, we can think about ways that this could apply to, or become a method of communication for people with later stages of dementia who can’t use language to communicate that. So that’s really, we’re at the very start of that process, but that’s the kind of future side for this particular project.

Megan Calvert-O’Hare:

Wow, okay. So you’re actually mapping the physiological response. Because we all recognize that we like music and we know it gives us a response and you hear a lot about it gives you goosebumps with certain pieces of music, so it’s actually interesting to see you’re looking at how the body is actually responding to music. I mean there must have been lots of research done on this, but actually then correlating that with, “I like this piece of music, my body is also liking this piece of music.”

Emilie Brotherhood:

Absolutely. I mean also I think it’s important to say that I think, perhaps, one of the most visceral responses that many of us have had to music is probably not the ones that have caused us to leap out of our chair and start shouting about how much we love it, or we’re in a social setting like in an opera or something that it’s not appropriate to do that. It’s that feeling, as you say, those chills, the goosebumps. There’s been a lot of work in research so far, including an article that came out recently, last year, about musical chills and there are subtle differences across all of us in the way that we physiologically respond to music. Some people experience musical chills, some people don’t have that physiological response, so there are definitely challenges in this research, but I’m looking forward to delving into the data and seeing what it says.

Megan Calvert-O’Hare:

Yeah, I don’t know whether you will have got to this bit, but I just wondered, obviously with heart rate and measuring … what were the other things you said? Heart rate and sweaty palms?

Emilie Brotherhood:

Galvanic skin response.

Megan Calvert-O’Hare:

Sweaty palms, yeah.

Emilie Brotherhood:

Yes, yes. Essentially yes, that’s potentially the amount of sweat on the surface of the skin. Subtle changes.

Megan Calvert-O’Hare:

Yeah, which could be, “I’m excited, I like this piece of music,” but I guess it could also be, “This music is causing me trauma, or nervous agitation,” and really not wanting to listen to it, which, I guess, is the challenge if then you’re going to use it in people who are non-verbal, because they’re not going to be able to corroborate what your readings are saying. Have you come across that yet? That there are quite similar responses, negative and positive?

Emilie Brotherhood:

I’m in the middle of analysing the data at the moment, so I haven’t been able to conclude anything concrete yet, but it definitely is something to consider. At the Royal Society conference that my colleagues, Emma Harding and Paul Camic presented at, they presented exactly this topic. It was about, is somebody engaged or exasperated? Really that’s a challenge in all of psychophysiological research, much the same as you could equate to, perhaps, in neuroimaging when you scan somebody and you see a particular area “light up” in the brain, whether or not that actually means that a person is thinking about the stimulus or something else. It’s quite a similar analogy, or I like to think of it as a similar analogy in terms of how the challenges of neuroimaging you can just as equally apply to psychophysiological research. But it’s a really good point and it’s definitely something that needs to be tackled in the field generally, as well as in this particular project.

Megan Calvert-O’Hare:

Grace, did you want to jump in?

Grace Meadows:

Yeah. I think it’s a really fascinating point actually. In terms of practice, one of the ways in which in the moment that’s dealt with is very much through the improvisatory nature of music that gets made with people living with dementia. I think there’s absolutely a role there for playlists and what playlists afford and how they help connections happen, but in terms of what Emilie’s talking about, that in-the-moment engagement, participation, the idea of being able to use music in an improvisatory form to modulate someone’s response, because you’re there, you’re taking in the whole of them in that moment, from a glance of the eye to an arm gesture or the whole body movement to the vocalization, to just the sense of what that person feels like in front of you, what you can then do as a music practitioner is modulate your response and the music that you’re playing with them in that moment.

So for example, if I was playing Loch Lomond with somebody and I saw that was making them well up, I might just pause a little bit and play around with the tempo, just to see whether those are tears of joy or tears of a fond moment, or actually they’re distressing tears. Actually, I could then make an informed decision musically about whether I continued with that piece of music, or whether I improvised into something else, moved away from it completely, or moved away and then came back to it at a later point. So although, I guess that’s the other side of what Emilie’s doing research wise, that’s how it’d be sort of brought to life in the music in the moment.

Megan Calvert-O’Hare:

Robyn, I have not forgotten about you. Maybe we can hear from you about your background, your research questions, your thoughts on all of this?

Dr Robyn Dowlen:

Yeah, definitely. It’s been so wonderful to hear both Grace’s and Emilie’s programs and research. They just really tie in to my research that I did for my PhD. So in a sense, it’s always really good to see when your research findings have applicability outside of the seven case studies that you did for your PhD research, so that’s a really good sign for me. What I found with Emilie is that her research I think is really … this idea of corroborating for people who are maybe non-verbal, I think something that I specifically focused on in my PhD research was on embodied responses to music and how we can understand not just how people might communicate their musical experiences verbally, but how they might show this experience through their bodies. I think this touches on what Grace was just saying.

Some things that I found was that you would see people’s bodies begin to synchronize with each other and music was a real leveller for that. You would see people almost acting as a metronome together, swaying in time to the music and also creating moments of these real pockets of intrigue in the group. If people noticed that everyone else was doing the same thing, there was this sense of cohesion. Even though it wasn’t just people with dementia in the group, it was this sense of, “We’re here for the music, we’re not here because I have a diagnosis of dementia.” My research specifically focused on these in-the-moment experiences and how we might capture these in a way that showcases the stories of people with dementia and really help showcase their creativity and their abilities to engage with music, whether they have just had this diagnosis or whether they are further in their dementia journey. So that’s just a very brief overview and reflections from what both Grace and Emilie have said.

Megan Calvert-O’Hare:

I actually wonder, because we talked, well I did, a bit about nursery rhymes, but also music being so strongly associated with memories. You were saying about people were starting to move in time to the music, do you think it helps if maybe they have no memories attached to that music, so they’re just hearing music? They’re hearing the rhythm, they’re feeling connected to a piece that they have absolutely no emotional connection to. Did you explore anything like that?

Dr Robyn Dowlen:

Yeah, so my research was based on an improvisatory music making program led by Manchester Camerata, who are an orchestra in Manchester. Their whole approach is about creating new music together with a group, because it kind of removes some boundaries to music access to a sense. For example, there were people who had lived most of their adult lives in West Africa, so coming into that space, they didn’t necessarily have the same repertoire as everyone else. If people were singing, say, the YMCA, which is obviously so prevalent within our society and everybody knows it, that would be something that musically wasn’t accessible to these other members of the group. So actually using different melodic structures and structures that go outside of Western music that we’re so used to, actually enabled these people to become more involved, because there weren’t the constraints of a shared musical history from the 1960s in the UK, for example.

Megan Calvert-O’Hare:

It seems like there are two broad strands of music therapy in dementia. There’s memory associated, so that’s really powerful to maybe help improve memory or reminisce about things which is quite important. I know the BBC have a music memory archive. But then there’s also separately using music more as a therapy to get people talking about things, or moving in a certain way. So I guess are you all more on the therapy side than the memory side?

Grace Meadows:

I’ll jump in there. I think it really depends on the need of the person and what it is that they want to use that music for to support them with. I think the memories can be a great springboard for helping someone to be in the here and now. That’s really what we’re trying to do with music, I think. We all have a past, we all have a present, we all have a future and what we’re trying to do in music is join that all up so we have this personal present idea. As you were saying, Robyn, you bring yourself into the moment, but then it means that you can also move forward. I think music is a really wonderful way of that being articulated. I think it really does come down to why it is you might be engaging in certain things. If you’re listening to music to alleviate a mood or to change a mood, then I think you can pop on a playlist or sit down and have a conversation with someone about that, but if you’re thinking more about health outcome or a care need, then you might be wanting to think more about the therapeutic use of music and the ways in which music might be applied.

Megan Calvert-O’Hare:

Okay. Actually maybe this comes to one of our questions a bit further down, but engaging with music does have positive health outcomes, yeah? I think we can all agree on that. Maybe Robyn, did you find that people did move more, it was quite a physical activity as well as … it can be quite a passive listening experience, but did you find there was more physical movement and that it helped, I’ve got here support delivery of physio programs?

Dr Robyn Dowlen:

Yeah. I mean it wasn’t something that was specifically the outcome of my research in terms of understanding these health benefits, but I can definitely vouch for some of my participants who … so Music in Mind happens within a circle and within the circle there are instruments placed on a table which people can go up and interact with, choose whichever instrument they want to. But other than that, the space in the middle of the circle isn’t always used. It was about week seven or eight of the project, we learned of one of the people with dementia in the group had a particular fondness of the Cuban music and South American music. As soon as those typical rhythms and melodies started, he would get up and use the centre of the circle as a performance space. He would dance, he would encourage other people to get up and dance with him.

I can definitely speak for the fact that music and dance are so intertwined and often they’re examined separately, so you would have a music intervention or you would have a dance intervention, but the fact is, even just sitting and listening to music yourself, your body entrains to music and your heart rate might change. So if it’s a particularly jolly piece of music, you might get excited and your heart rate might increase. It goes back to those musical chills that Emilie was talking about. There’s something really powerful about music and being able to activate something within our body. Maybe that gives us this desire to get up and dance sometimes, it depends on the music.

Megan Calvert-O’Hare:

One of my favourite quotes, and I feel I bit bad that I don’t know who said it, but it was on a Radio 3 program, “From our bodies to our brains, we are all rhythm.” I think that’s really true. Yes, they are so linked, dance and music, because music essentially is rhythm and then your body just feels it and wants to be part of it, really.

Dr Robyn Dowlen:

Yeah, definitely.

Megan Calvert-O’Hare:

I think maybe we need to talk a little bit about integrating this into care. This is to all of you really. How can music be integrated into care? Go.

Grace Meadows:

Go. Well how long have we got, really? There’s a whole raft of ways really. Again, without wanting to sound as though I’m sidestepping, it depends on where the person’s at. If you’re working in a care setting that has a really large range of needs in terms of people who are still verbal, very mobile, how you might integrate music into their care is going to look very different for someone with advanced dementia or at the end of life. It’s really about looking at … now that we’re in the world of personalized care and individualized care plans, I think it’s really about breaking it down into what can be woven into that person’s daily care plan.

That might be using music to help them get up and out of bed in the morning, get them set up, if you like. That can take the form of a favourite song or a carer humming a favourite song and starting the connection in that way, or it could be you have your music therapy session after breakfast. It really depends on what resources you’ve got available and what that person can manage throughout their day. Of course then there’s the wider context of how many people you’ve got to then replicate that for.

I think one of the ways of doing it is to look across the care plans of all the people that the care setting is caring for and thinking, where are the commonalities here? How can we bring people together throughout the day to create shared moments so that we’ve got a sense of awareness of self in relation to others, we’ve got a sense of groupness and we’re creating a community feel? And then how can we also be weaving it into the rhythm of the care day? And thinking about the wider community, how can we bring the wider community into the care setting? We know that’s so important and we’ve seen such beautiful work with intergenerational projects where children have gone into care settings.

Megan Calvert-O’Hare:

I have to say, my son’s nursery, obviously pre-COVID lockdown, they used to go to a day centre and sing. It was nursery rhymes, only because they’re three, but yeah, they used to go and it was so positive for everyone.

Grace Meadows:

That’s exactly it. The benefits are for all, really. I think there’s something really special about those projects, because what they do is they unmask people. That’s the way I’ve witnessed it really, because you see the person for who they are beyond their dementia. I had a wonderful story told to me about some musicians who went into a care setting and there was a lady who had 24 hour care, she couldn’t be left to do anything on her own, so she thought. Some musicians came in and they did some work and, before the carers had even realized what had happened, this lady got up out of her chair unassisted and started moving to the music and smiling. Her whole demeanour changed. The carers were sitting there thinking, wait a minute, we’ve been told that she can’t do this, that she doesn’t have these kind of independence skills. Hang on a minute. They watched her have a wonderful time, then they had to completely reconfigure her care plan and think, okay, so what can she do?

That’s the other thing with music and dementia, for some people they acquire new skills. As Robyn was saying, that cultural aspect, I think it’s a really good point that you brought up actually. Sometimes the blending of cultures and stepping outside of your own cultural comfort zone means that you can come to something with a blank screen, if you like, blank slate and you can learn things. I think it’s a real myth that because you’ve got dementia you can’t acquire a new skill or experience something and then get to grips with it and enjoy it.

Megan Calvert-O’Hare:

I guess it sort of comes back to a theme that keeps popping up. It’s an innate skill, isn’t it? It’s something that you’re born with, it’s very much part of your life from birth. Hearing the heart beat in the womb is the classic, but you’ve had that for nine months, so that’s rhythm always in your life.

Grace Meadows:

Absolutely. And we have so many elements of our being that are beautiful elements, rhythm, pitch, tone, voice, timbre, all those things that come together to make us musical beings.

Megan Calvert-O’Hare:

I think this is a question maybe to Emilie, because you brought it up when we were sending round questions, but the bit about … because we talked a lot about personalized medicine, therapy, but people who don’t like music, it just might not work for them, that must come up?

Emilie Brotherhood:

Absolutely. So I’ve definitely, just anecdotally I’ve had participants who … I asked for the full range of people, people who’ve actually been professional musicians, right through to the people who said, “Actually music isn’t really my thing,” but I invited everybody to take part to gather that information as part of the research. I’m really interested to see if there’s a difference in the kind of physiological responses that they elicit. But I think it’s important to acknowledge, without detracting from the amazing work of musicians and therapists, of course, that music isn’t … and I think Robyn, you brought up this phrase, so credit to you, it’s not always side effect free. This is why it’s particularly valuable to establish personalized preferences for music. For example, there’s a research group in Australia who play baroque music to a group of elderly care residents and actually it had the opposite of the desired effect, in that apparently it increased the behavioural demonstration of them being agitated. So of course that’s clearly something in care planning that we wish to avoid.

I think answering that question more broadly, I think it’s always helpful to ask the question of ourselves, so I’m sure with or without dementia we’ve all perhaps experienced just how irritating it is to listen to a song that we hate. Then extending that sympathy into thinking about being in that situation yourself and not even being able to communicate that you want for somebody to turn it off must be incredibly frustrating. You can almost feel your heart rate increasing even just at the thought of it, so it’s definitely important that we consider that music might not be a panacea in dementia, as an approach to dementia care. But as I say, without detracting from incredibly music programs, such as Music for Life that does amazing improvisatory work.

I think perhaps that is where the in-the-moment music research is just so important, because as Grace mentioned earlier and Robyn as well, you pick up on these tiny, subtle changes. Perhaps one song works great and as soon as the song isn’t working so well, it’s exploring that. And also not being afraid to explore that, as sometimes, just because someone has a negative response to music, it might also, it’s still a response. There is this sort of uncomfortable space that especially music practitioners have to be comfortable in holding. Do you draw it further? Do you move on? Do you do a bit of both? So yeah, I think that’s the important points on that one.

Megan Calvert-O’Hare:

Yeah. I guess it’s not just … everyone’s got their hand up. I’m going to say this and then come to you. I guess it’s also not just about, “I don’t like this piece of music, I’m responding badly to it,” also just sensory overload. Autistic people on the spectrum find that if it’s too loud, it’s too much. We’ve also probably all been there, when we’re having a bad day you don’t want someone yelling at you or music really loud. Supermarkets do times where there’s no music in the supermarket and the lights are dimmed. I don’t know whether you’ve found that, as dementia progresses, whether that’s common? It’s too much sensorially to be bombarded with music? I don’t know. But also, hands, who had their hand up first? Grace?

Grace Meadows:

I was just going to follow up with what Emilie was saying in terms of preferences, again, these change throughout someone’s course of dementia. So I was thinking about musicians, highly trained musicians who at first actually can’t take solace in music and they can’t use it in the same way because they find that their technique’s falling away, or they can’t remember music in the same way that they used to. So I’ve found cases where people who were highly trained musicians don’t go anywhere near music for a large part of their dementia journey and it’s only in later stages when some of that emotional attachment to music has really fallen away, because they no longer associate themselves as having that status, musician status, that they can then re-engage with music again. I think there’s something there also about somebody’s musical care plan, if you like, is a living dynamic thing. So what might be recommended in the early stages might be very, very different to what comes up later on for them in advanced stages or end of life care.

I think your point about sensory is really interesting, because we know that there is a relationship between dementia and hearing loss and that dementia can be exacerbated if someone has a hearing loss, so we’re always very keen to try and encourage practitioners to almost do a hearing audit when they go into a care setting to find out what the hearing requirements are of people, to do exactly what Emilie was saying in terms of helping to mitigate any potential agitation, because we know that’s counterintuitive, really, to what we’re trying to achieve.

Megan Calvert-O’Hare:

Yeah. Robyn, did you have some points to make on this?

Dr Robyn Dowlen:

Yeah, so it’s just coming back to what Emilie was saying about musicians and music therapists having to make this judgment about what is a positive musical interaction. It really made me think back to being a researcher in the field at the time and going up against ethics boards who said, “If anybody shows any distress, you have to withdraw them immediately from the study.” This is a group setting, these people are working, making music together for 15 weeks and it was, I had to make real judgements in that setting between what was distress that would mean I would have to make sure that this person was removed from the music making environment and what was just an emotional reaction to music.

I think that’s something that is very … as well as musicians and music therapists doing that, in that setting I was a researcher there to observe. For me to … luckily there weren’t any instances of anything I would deem as being overly distressing, but it’s having that other hat on in that setting as a researcher and how do we ensure that we aren’t causing any distress? If there is distress, how do we react? So I have many protocols and I’m sure that musicians and music therapists going into these settings have these protocols as well, to be able to guide their practice to enable something to be as safe as possible, whilst really enjoyable and fulfilling for someone with dementia.

Megan Calvert-O’Hare:

Okay. Actually Robyn, the next question, maybe we can come to you about a debate surrounding how we measure the impact of music. I’m kind of changing gears now, getting a bit more serious, but yeah, maybe you could talk us through that a bit?

Dr Robyn Dowlen:

Yeah, definitely. With my PhD it kind of came off the back of Nick Ponsillo, who was at Camerata before, at the time had met with my supervisor, John Keady, who was working at the University of Manchester. Nick had this real frustration in that he felt that the sort of evaluations that he was doing of Music in Mind weren’t capturing exactly what it was that was happening in these moments, because he was expected to report on symptoms, reductions in falls, things like are people taking medication or are they taking less medication? All of the sort of evaluations that were done really wouldn’t show that many changes over time, so they would take these measurements before and after, say, a 10 week program. This was really difficult to digest for them as an organization, because they were seeing these really powerful stories of people making music and it really changing their lives, but the evidence that they were capturing wasn’t seen as good enough to prove that their program had an impact.

It kind of reflects the widest of debates in this area, which are how do we measure these impacts? Can we just measure a range of behavioural and psychological symptoms of dementia at time A and time B and that is good enough evidence? Actually, what a lot of that research shows is that it’s really mixed and it’s really difficult to capture a change in a number over time, whereas actually this more in-the-moment work and qualitative work, which actually gives a voice to people with dementia rather than simply reducing their experiences down to a number at time A versus time B. This has a whole range of challenges within this area because, for example, the most recent Cochrane review in this area shows that music might have an impact on depression, but that’s it. They say that the evidence isn’t strong enough to be able to draw any other conclusion.

I am sure Grace feels this, Emilie feels this, many musicians that I have worked with feel this, that those sort of research studies are not capturing what they do and aren’t capturing the magic of music. It’s kind of flipping things on its head to understanding music at that micro level of these impacts and how that benefits more broadly, so yeah.

Emilie Brotherhood:

Robyn, this reminds me of a paper I was reading from a group in Japan who were measuring a music intervention over a period of eight weeks. They just took time point A as being before the eight weeks and time point B as being at the end and then went, “Oh, we did the analysis and actually there was no change and no increase in quality of life ratings.” They said, “Oh, but actually in the sub analysis there was a change in session two,” but then sort of moved on. I just thought it was interesting.

This was a number of years ago, but I think it kind of reflects, perhaps, how the field of music in dementia research perhaps considers this now, considers in-the-moment research as value, because obviously at the time that was just a very small sentence in a publication. But actually delving into that more, that’s a demonstration, arguably, of a more in-the-moment change, but it was almost disregarded at the time, because the overall effect that it hypothesized wasn’t shown. As you were describing that I was sort of thinking about it and it just reflects, perhaps, a change in mood and tone.

Grace Meadows:

And it’s really interesting … go for it, Megan.

Megan Calvert-O’Hare:

I was just going to say, would you suggest not just time point A at the beginning, time point B at the end, but time points in the moment, as we keep talking about, so that would be a time point?

Emilie Brotherhood:

Absolutely. I mean, again, they didn’t use the types of physiological responses that you can take in the moment, so for example, saliva, it’s pretty disruptive to take someone’s saliva sample right in the middle of a song, so they did it before and after, whereas with the wearable technology that, for example, I use in my research, that is quite a discreet sensor that can be continuously measuring. So for this particular research, I can understand why they selected to do time point A and B at the beginning and end of intervention and obviously before and after each session, but yeah, there are ways of continuously measuring those things with extraordinary accuracy in terms of the timing and time related events and those changes that you might see in the moment.

Megan Calvert-O’Hare:

Grace?

Grace Meadows:

I was just going to echo Emilie actually. When I was working in a child development centre, I was part of an RCT with music and autism, music therapy and autism. We found just that the headline finding was that there was no change and that music therapy didn’t make a difference. Having said that, having been with those children in sessions week in, week out, the change was noticeable. It wasn’t just the child who changed, it was then the responses that came about because of the changes in the child. So I was thinking about the experiences of parents, the experiences of teaching assistants and the experiences of teachers and the ripple effect that goes on that doesn’t get captured often in research findings. I had parents telling me, “This is the first time I’ve heard my child speak in months, if not years. What is it that’s going on in the room here that I’m not seeing? Can I be a part of that?” And then teachers saying, “I’m finding their attention has been massively increased in class, what’s going on?”

What was frustrating, I think, for those involved in the research was that those nuances weren’t being reflected in the findings, which is a bit disheartening, because actually we know this stuff on a really felt level and we see it and we hear it, but it’s not being articulated anywhere. I think that’s when the mixed methodology is much more powerful. As you were saying, Robyn, it allows more people to have more voices and for different experiences to come through. I think we never look at one thing in isolation. I don’t look at a person living with dementia and think, oh, that person is just their own contained self. They’re connected to people and systems and places and actually how they are impacts on the people in the places around them. Thinking more broadly is so important when it comes to how we set research out and how we articulate findings and how we conduct it.

Megan Calvert-O’Hare:

So what measurements were you using? What outcomes were you looking at in that RCT for music therapy in children with autism that meant you weren’t … and what should you have been looking at?

Grace Meadows:

I think one of the issues with that particular piece of research was the scales that we were using weren’t actually scales that would get us the results that we wanted, if that makes sense. So we were trying to use a standardized autism assessment tool, which didn’t actually account for the improvisatory nature of music therapy and what then comes up. I think this is one of the biggest research challenges for the music therapy and music more broadly is having the right tools to conduct the research in the right way. Robyn, you’re nodding and I don’t know if you would speak to that more than me, perhaps?

Dr Robyn Dowlen:

Yeah, definitely. I think when I was doing the review of literature to base my PhD research questions, what was really clear was that there was a real desire to understand how music reduces agitation. The majority of the times, the Cohen-Mansfield Agitation Inventory was used as an outcome measure and this was not showing much change in a range of studies. But going back to that mixed methods and looking at qualitative, you have these wonderful accounts of how music is changing people’s outlooks, how it’s improving mood, how it’s enabling them to feel that sense of connection with another person.

I think what’s also interesting is coming back to this study that Emilie mentioned about the baroque music. Because it was a semi randomized control trial and they were trying to be as standardized as possible, they played this music at a particular volume. This was what they were going to do every day. They played it at two PM every day at this level and it was baroque music, quite intense, quite stimulating music. Then they started to see these psychological and behavioural challenges arise, but because it was in their protocol that they played it at this volume at this time, it wasn’t changed, so I think that it’s all about context. I think if you’re just using one tool to measure something before and after, it just means that you’re not able to adapt to that particular context.

I think what Grace and Emilie have already spoken a lot about is this idea that we’re not, the person with dementia isn’t going to be in a vacuum when they’re listening to music and it’s all about understanding the context they’re in, the mood they’re in, the frame of mind they might be in at the time and just adapting our practice. I think research should follow suit and have a number of methods available to be able to capture experiences.

Emilie Brotherhood:

I really agree with that.

Megan Calvert-O’Hare:

Sorry, that sounds a little bit like torture, having it played at the same time at a certain volume every day, like they do in Guantanamo Bay where they play Sesame Street at you. It sounds awful and not a relaxing or therapeutic session at all.

Grace Meadows:

Yeah, or a beneficial experience. I think that’s really, it comes back to this point again, doesn’t it? The importance of personalization, understanding where the person’s at. Robyn, just as you were speaking then, I was thinking very much about culture and context, as you were saying. A music therapist was talking to me about a gentleman who was very agitated, particularly around meal times and they couldn’t work out why. They were like, “But he’s having his dinner, what’s the issue here?” And the music therapist who was working with him got to know his culture, his identity, his history and she felt, through the songs that they were singing and delving into his Irish history, that in his world he always had his cup of tea before dinner, then he would have his dinner and then do whatever might come next. But what they were doing in the care home was they were giving him dinner first and then he was having his cup of tea. It was causing lots and lots of agitation.

She managed to talk to the carers and said, “Oh, I wonder if you just change the order of things and serve him his cup of tea first and then give him his dinner, see what happens.” As soon as that happened, all that agitated behaviour around the mealtime disappeared. It just vanished overnight. I think that is where music can be so powerful in changing the culture of care around somebody and helping to really understand somebody and give them this personalized care that they need.

Emilie Brotherhood:

Perhaps when you say about the power of music, it being allowed to be evaluated, I think, Robyn, just picking up on points that you’ve said about the struggles and challenges that perhaps we’ve had in ethical committee decisions and the way that music is somewhat medicalized, trying to shoehorn it into a medical model is very much … I can understand why it’s done and why it’s a fashionable approach, but I think through all the conversation here, I think it’s hopefully quite clear that it’s a very different animal. Trying to fit it into that is very square peg, round hole. I can understand with ethics committees and randomized control trials, that’s a very protocol driven, strict, inflexible structure and rightly so for when you’re delivering a medicine. But when you’re delivering music, it’s particularly different, so it’s trying to communicate that to the regulatory bodies that perhaps frame the research and who we always have to communicate with and discuss these things with. So creating more of a dialogue with that, I do think would be a massive help in progressing the field in this particular area.

Megan Calvert-O’Hare:

Okay. Not wanting to take the side of ethics committees, but bigger, bigger picture, Robyn you mentioned about a metric could be less medication or more medication, but thinking bigger picture, ultimately do we not want to be aiming for reviews of medication and that music therapy could be helping that? So long term, after a year, could that be used as a metric? I don’t know whether you have any thoughts about that.

Dr Robyn Dowlen:

I think it can be really difficult to address that question, just because as we’ve talked about this complexity, but also there are many, many music programs that just are not able to run for a year. A lot of the time, music organizations are finding the funds to be able to deliver these programs for free, because they are quite expensive to deliver because you’re obviously employing professional musicians or music therapists to be able to come into these settings and work with people with dementia. I think a lot of the time it’s coming back to this idea of ripple effects. It’s not that you could say, “Okay, music leads directly to reduction in medication,” but what you could maybe say is, “Okay, music makes this person’s mood better and in the long term that has led to a reduction in medication.” I think it would be really challenging to say music leads to this person taking a dose of whatever, compared to this higher dose they were taking before.

Grace Meadows:

Yeah, absolutely. I think also, with dementia being a condition which causes decline, over time the medical needs may change. Everything is always moving, I think, with people living with dementia, so it’s not as simple as take this drug and this will be the result over a given period.

Megan Calvert-O’Hare:

Okay. So I think we’re coming to the end today. It’s been really great. I have one last question for all of you, which is basically what is your favourite track? What is your favourite music to listen to? I’m going to go to Robyn, because you’re left on my screen I’ll ask you first.

Dr Robyn Dowlen:

Yeah. So this lockdown I’ve been listening a lot to the soundtrack from Waitress the musical, which I was hoping to see but obviously cannot see it at the moment. I know all the songs by heart, so I look forward to being able to see it when I can.

Megan Calvert-O’Hare:

The next step is learning the dance routines, I assume? Okay, and Grace?

Grace Meadows:

Well the last live music performance I saw was Elgar’s cello concerto and it’s been a lifelong piece that I’ve loved, so that’s kept my hope alive that we’ll get back into concert halls and experiencing live music again at some point this year, not next year.

Megan Calvert-O’Hare:

I hope so. Emilie?

Emilie Brotherhood:

Both great choices, can I just say, from Robyn and Grace. I’ve been listening to a lot of acoustic stuff just to kind of keep the blood pressure down in this current situation, but one of my favourite artists is Ray LaMontagne, who famously doesn’t do tours that often, but I’m hoping when lockdown lifts it might motivate him perhaps to do a UK tour so I can finally see him.

Megan Calvert-O’Hare:

Okay. Thank you everyone and, as always, we will have profiles of our panellists up on the website. Please do visit our website. We have lots of lovely webinars going on. Please subscribe to our podcast through iTunes, Spotify, SoundCloud, Podbean and any others that you listen to our podcast through. Thank you very much.

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