In my second vlog I share my passion for music and dementia with my childhood friend and distinguished broadcaster Sue Saville.   Join us as we chat about the final precious moments I shared with my mum, why music has such power to connect with people even when their dementia is very advanced and how wonderful organisations and projects are springing up to enhance the lives of those with the condition and their families through music.   I loved talking about this topic – and once again the video is best watched in full screen by clicking on the small four arrow icon, bottom right.   The full transcript is set out below. 

PIPPA: Hello, I’m Pippa Kelly. Some of you may know me through my dementia blogs and articles and in this series of podcasts I’d like to talk to you about what’s happening in the dementia world; I’m going to focus on very best practice and some of the inspirational individuals and organisations I meet along the way.

Today I’m really pleased because I’m going to be talking about one of my great passions: the power of music to connect with people in even the most advanced stages of dementia, and I’m delighted once again to introduce my friend Sue Saville, who’s here to talk to me today. Sue is a very old friend of mine – we’ve known each other for far too many years to mention. She’s also a very respected and distinguished journalist and broadcaster and was for many years ITN’s health correspondent.  So Sue, it’s over to you to ask me some questions about this, one of my really great passions, music and dementia. 

SUE: Well Pippa, it’s lovely to be here with you again and particularly to hear about this passion you have for music and dementia. I understand there’s a personal story behind that?

PIPPA: Yes. Absolutely.  And once again it relates to my mum, who lived with dementia for the last decade of her life. My mum died on Christmas Day a few years ago now and on the Christmas Eve, I received a call to say that she was very ill in her nursing home in Dorking and I should come down from London to see her.   It was Christmas Eve, I was really busy and to be perfectly honest, I nearly didn’t go.  Of course I did go and as I was driving down to Surrey I suddenly remembered that we could listen to the Service of Nine Lessons and Carols from King’s College, Cambridge together. This was probably one of my mum’s favourite things, ever. She loved Christmas.  I arrived in time and turned on the radio. 

Anyone who knows this service will know that it always starts with Once In Royal David’s City, with a lone chorister singing the first verse.   By then, my mum had, for about two months, been lying in bed, immobile, sleeping the whole time, with her eyes shut.  But as the first notes of Once In Royal David’s City came onto the radio she opened her eyes. That’s all she did. She just looked at the white, painted ceiling of her nursing home room but it was very powerful for me. It was very moving because there was a definite connection.   Something definitely happened deep inside her.  We sat there for the hour and listened to the service together and then the following day, Christmas Day, I received a call quite late to say that I needed to come down again.  I drove down as quickly as I could but I arrived just a few minutes too late. My mum had already died, which was terrible. But at least I had this fantastic memory of the time we’d spent together the day before, which was so powerful.  And I’m eternally grateful for that.  Of course at the time I didn’t realise that, quite unwittingly, I’d done a very good thing by listening to music that meant so much to my mum. I had no idea. It was just by luck.

SUE:  Why do you think that this great connection is made with music when other connections in the brain have been lost?

PIPPA:  Well, it’s very interesting Sue.   Two years after my mum died I set up my blog and I began to become far more immersed in the dementia world.  And actually it was thanks to you Sue – I don’t think you know this – because the first outing I had as a blogger was to an event at the House of Lords where Sally Magnusson (the daughter of the late Magnus Magnusson, former presenter of Mastermind) was launching her book, “Where Memories Go”.  In it she talks about her mum Maimie Baird who always loved to sing and the fact that, right up to the very end of her life with dementia Maimie she was able to sing all the words of the songs.  Sally researched why this was and in her book (which is a beautifully written memoir of her mum) she talks about going to visit the late Oliver Sacks, who puts it very well.  He says that the past, which is irrecoverable in any other way, is embedded in music as if in amber, which is a wonderful way of putting it. 

There are a number of reasons why music connects so powerfully.  It’s a bit like a tip-of-the-tongue moment because music connects to various different parts of the brain and there are so many different elements of music – there’s the rhythm, the cadence, the lyrics, the tone etc.  And because of all these different elements, various parts of the brain are used,many neurons are firing and then a connection is made, as it is when you’re thinking of a name and people are firing questions at you – and suddenly that tip-of-the-tongue moment will come and you remember.  And that is what happens with music.  In addition, music connects to the bits of the brain that are the last to be destroyed in somebody with dementia, so they are still working. 

SUE:  And others have taken up this theme of music and its benefits for those with dementia, I believe?  And you’ve come across some of those and work with them?

PIPPA:  Yes, several actually.   One that springs to mind is called Turtle Key Arts.   They use all the arts but they have one sector that is Turtle Song, and I went along to see how it works.  It’s extraordinary because really high level musicians are involved.  They work in collaboration with English National Touring Opera and with the Royal College of Music – so at extremely high levels – and these musicians join with people with dementia and their families and carers, and over the course of 10 weeks they work in collaboration to create a song.  They choose a topic such as holidays, summer, winter or Christmas – but whatever the topic is they all work altogether.  They meet and create a song and then over the 10 weeks they will refine it and then they perform it in front of quite a big audience.  I couldn’t really get my head around the idea until I saw it in action, but it is absolutely collaborative.   The people with dementia contribute just as many ideas about what should be put in the song and the way it should go as the musicians.

SUE: Now, I understand you have a bit of a mission yourself to use music in a way that can really bring benefit to those with dementia and perhaps also other older people, via the radio?

PIPPA:  Yes. Well, this wasn’t my idea. It was at another event at the House of Lords (I don’t spend my entire life at the House of Lords!)  But this was another dementia event to do with music and dementia, and the guest speaker this time with the soprano Leslie Garrett, who gave a wonderful speech. She is patron of a dementia and music charity called The Lost Chord (her auntie Joan had dementia) and at the end of her speech (which was brilliant, she kept bursting into song), as a throwaway remark, Lesley asked if anybody present remembered Singing Together, a radio programme on the BBC. 

SUE:  Which we are far too young to remember ourselves!

PIPPA: Yes, quite.  But, well sadly, I’m not too old and I did remember it.   It was before we met Sue.  I was about eight or nine and I was at school at a convent.  I’ve researched this – I couldn’t remember all about it – but it turns out that on a Monday morning at about 11 o’clock the nun would tell us that we were all going to listen to Singing Together, and she would turn on the radio.  The presenter at the time was William Appleby and he would say a bit about the song (the songs tended to be simple songs with rousing choruses), then he’d sing a couple of bars and tell us to sing it.  So we all sang it – and I can really remember doing that.   And the point was that the programme was introduced way back in September 1939 at the very outbreak of World War II on the BBC’s Schools Service to bring together children who’d been evacuated at the beginning of the war.  The idea was – as the title says – singing together would bring together evacuated children who had been displaced from their families.  Of course, I knew none of this at the time, when I was just eight or nine, but I do remember that sense of community, that you felt that you were all singing together and that all over the country children your age were singing the same words of the same song at the same time.  There was something very sort of “coming together” about it.  And Lesley Garrett’s idea was the BBC should reintroduce the radio program, this time for older people and those with dementia, and I thought that it was a brilliant idea.  Its brilliance lies in its simplicity and I love the echoes of people being sort of displaced from their homes into care homes with the evacuee children during the war. 

SUE:  And they would be the generation who remembers that of course?

PIPPA: The might well be, absolutely.  But the other great thing about the idea is that because it’s a radio programme it doesn’t have to apply to just one sector of the community.   Anybody could listen – it’s for all generations. All you’ve got to do is lean out and press the button on a radio.   Many care homes don’t have very good Wi-Fi and Lesley’s idea is just so simple.  You could have groups coming together, you could have an activities coordinator in a care home making sure that everybody listens or you could just have an old man in his home who wants to listen to the radio and puts his radio on, or you could have mum in a kitchen with a young child who wants to sing at the same time, and they might know that granny up in Derbyshire, who is in a care home or in her home, is also listening. It’s a fantastic connector. 

SUE: And perhaps those benefits could be brought to a wider community, perhaps through something called social prescribing?

PIPPA:  Yes. It’s absolutely social describing.   And this is particularly relevant to dementia because of course, there is no cure. So despite the fact that pharmaceutical companies have spent billions of pounds trying to find a cure, there’s not been much progress, even in terms of mitigating the symptoms.  For some people at some points of dementia, some drugs might just slow it down a little bit, but there’s no cure so dementia is a condition for which social prescribing is absolutely brilliant – whether it be through gardening, the arts, poetry or reminiscence work, but particularly music because there are these neurological reasons why music is such powerful connector. So I’m very pleased that in the current Health Secretary Matt Hancock we do seem to have somebody who believes in social prescribing, who understands the value of other ways of going about things that don’t involve drugs, which is great in terms of dementia.  And yes, if we can push forward and use music in a way that will really help people with dementia I think that will be absolutely wonderful.  We do seem, hopefully, to be doing this, which is absolutely great.   The Government have some other distractions on their mind at the moment but I’m really hopeful about this because I do think that traction is being gained now, so that’s very good.

SUE: Well if I know you Pippa, perseverance is your middle name and with you behind this, the idea should really get some traction. I saw that perseverance when you’ve got your book Invisible Ink through to publication and I’m sure you’ll take this all the way.   It’s been absolutely lovely hearing about this passion and there are others you’d like to talk about as well. I understand?

PIPPA:  Yes. Absolutely. There’s so much to talk about.  For my next podcast I’m going to talk about some of the inspirational individuals I meet along the way with my dementia work.  It’s interesting because often, when people hear what I do, they think it must be very depressing, but actually it’s quite the reverse.  My work can be very uplifting and inspirational – and that’s what I’m going to talk about next time.

SUE: I really look forward to hearing about those individuals. Thank you so much.