FEATURE: Time Out of Mind: Music for Dementia 2020 and a Pledge We Can All Get Behind




Time Out of Mind

IN THIS  PHOTO: D.J., broadcaster and journalist Lauren Laverne (left) is the Ambassador for Music for Dementia 2020 and wants more to be done to ensure music is free for all those who suffer from dementia/PHOTO CREDIT: Getty Images/Music for Dementia 2020

Music for Dementia 2020 and a Pledge We Can All Get Behind


I am going to get a bit nostalgic in this piece...


 PHOTO CREDIT: @elien_dumon/Unsplash

as I am writing about a disease that affects memory. That might sound like a loose and unrelated reason to discuss dementia but, as we know, the disease is serious and takes a lot from a person. I will mention a couple of big names who are supporting Music for Dementia 2020 and outlining why dementia is so serious; the role music plays and why it should be free for all those who suffer the disease. Before explaining the reasons behind writing this feature, it is worth noting who Music for Dementia 2020 are and what their aims are. From their website, we can see they are a brilliant organisation with a great aim:

It is anticipated that there will be one million people living with dementia in the UK by 2021 ¹. Music is a powerful connector and has the ability to bring people together in the here and now. It can enliven, stimulate and enable people living with dementia to express themselves creatively through musical engagement.

Research has shown and lived experiences demonstrate that music has the ability to help reduce the often-distressing symptoms of dementia, such as agitation, apathy and anxiety.

Music supports people living with dementia to communicate beyond words, helping them to connect with others. It supports emotional health and wellbeing, particularly at a time when emotions can be overwhelming or difficult to process or manage. It has a valuable role to play in enhancing quality of life and supporting carers in their vital roles.

IMAGE CREDIT: The University of Queensland

Music for Dementia 2020 is a national campaign to make music available for everyone living with dementia by 2020. Led by The Utley Foundation, the campaign is a direct and positive response to the Commission report on Dementia and Music. (See section below for more information about the report).

The recommendations in the report are a call to action for all. The Utley Foundation is leading the way by creating a national taskforce of stakeholders from across the music, dementia, health, social and care sectors, from people living with dementia through to MPs, to help improve the quality of life for people living with dementia through music by making it readily available and accessible.

Click here to become a member of our taskforce

By 2020 we want to:

  1. Have the support of the music, social, health, and care sectors in making music readily available for people living with dementia.

  2. Create a collective understanding across society that music is a necessity for people living with dementia and they need access to it now.

When we talk about music being readily available, we are talking about the whole spectrum of music, from understanding how to create the right environments in care settings through appropriate use of the radio through to active participation in live music making, playlists, listening to performances, using music to enhance and enrich care, and music therapy. People should and need to be able to make choices about what types of musical activities are best for them. This campaign wants to make sure that choice is available to you wherever you live across the UK, and that you have access to high quality musical activities, from the best in the latest music technology to evidence based music therapy”.

It seems shocking that music now is not free and available to all who live with dementia. I have no first-hand experience of dementia but my mother is a care worker and regularly is exposed to people who do live with it. Family members and friends can be forgotten instantly; cherished memories can escape and the sheer fear of not knowing your own name and where they are. We misunderstand dementia but we are aware of how serious it is and how it changes a person. Imagine going through your life normally and then, when you get to a certain age, you start forgetting stuff you used to know. There are different levels of severity but, for many, daily life can be interrupted and affected in a very serious way. I have memory problems but it scares me that, one day, I might suffer from dementia. There is no family history of it but I do worry that I will be afflicted in older age. Maybe it is irrational but it seems that, with each year, more of my precious memories start to fade. Why is it important to get music to dementia sufferers without them incurring a cost? Music, to many of us, is a way to pass time and provide some emotional release. Everyone has different reasons for listening to music but we all get something from it. If you are in a crappy mood then you can play a song that will definitely lift the mood. I guess we all take it for granted because we can access pretty much everything recorded without paying for it.


 IMAGE CREDIT: Pinterest/Katyau

Music is used as therapy and has been shown to make a real difference for those who suffer mental-health problems. Whether it is a stirring piece of music we have not heard or a much-loved favourite, music has the potential to transform people and keep them alive. Certain songs can actually give people impetus and a new lease. Whether it is a potent lyric or a particular time, there is no telling just what music can do. In dementia, there is an extra reason why music is so special. We store music in a different part of the brain to other memories so, whereas we might forget conversations or events from a few years ago, we can retain music from much further back. Organisations like Music for Dementia 2020 knows that many dementia sufferers have music stored in their mind; they might not know their loved ones and their past but there are songs in them! Music can unlock those and, with that, help aid the memory. Maybe it is ironic but music itself can unlock music memories that can, in turn, help restore memories that had been forgotten. I can think of few illnesses and diseases that are scarier than dementia. The fact that as many as one-million people might have dementia by 2021 should all give us pause for thought. Music cannot cure dementia on its own but it is clear how important it is regarding therapy and support.


 IN THIS PHOTO: Actor Vicky McClure/PHOTO CREDIT: Getty Images

I will come to my own personal reasons for supporting Music for Dementia 2020 but there is a lot of positive support in the media regarding dementia and ways to make the lives of sufferers better. Actor Vicky McClure is a big supporter and someone who knows the pains of dementia. Her series, Our Dementia Choir with Vicky McClure is a fantastic series and one that puts real sufferers in the spotlight. The series uses music/a choir to show how affecting it can be when people with dementia bond through music. Make sure you watch it but, as this review from The Guardian shows, we all can stand to learn a bit more and understand just how serious dementia is:

Music, though, often remains after other things have gone. Lyrics learned long ago can be embedded too deep for the ravages of age to erase them. The power of notes and harmonies to uplift, move and connect synapses and people remains potent. With this in mind McClure and a team of musicians and neurological experts (and the BBC in conjunction with the Open University) have brought together a 20-strong group of people with different types of dementia, from McClure’s home town of Nottingham, to form a choir that will give a public performance in a 2,000-seater venue in three months’ time.

Chris, 67, has fronto-temporal dementia, which attacks the areas of the brain that control behaviour, personality and language; the bits that make us most “us”, if you like. He is becoming more outspoken and inappropriately behaved. Perhaps as part of it, he seems sunnily unconcerned by the condition. His wife, Jane, who has taken early retirement to care for him, says: “It’s like the long goodbye – every week, every month, we lose something of Chris. He’s not the person I married. I just find the whole thing so, so sad.”

The choir starts learning Stand By Me (as arranged by their choirmaster, Mark De-Lisser, for Harry and Meghan’s wedding). Betty, Chris and Mick are soloists unafraid to belt out a tune, and Julie builds up her confidence with every outing. McClure is genuinely involved in rehearsals, as well as fulfilling her role as presenter and interviewer, gently soliciting people’s stories and offering sympathy and empathy without sentimentality or strain. The programme takes the same approach. The choir members and those who look after them speak for themselves, and there are no contortions to fit anyone on to a particular path and force “a journey” on them. Everyone’s dignity remains intact and the blind cruelty of the condition is left to tell its own story, even if the harsher realities of their lives are not dwelled on”.

D.J. broadcaster and journalist Lauren Laverne is the Ambassador for Music for Dementia 2020 and has been speaking about her reasons behind supporting this wonderful drive:

She explained, “Music should be made free for everyone living with dementia.

“I’ve seen the way music can change people’s lives. This is my industry, and this is a thing that this industry can do to help the people who created it; you know, people who grew up in the 60s, and bought records and then CDs.”

“This is a generation who paid their music taxes, and made the music industry what it is today. We’d love to see streaming services make music free for everyone living with dementia.”

Explaining her own connection with music, she said, “I can’t imagine my life without music.

“And we all instinctively know how important music is, and how beneficial it is for our wellbeing. It connects us to others, to our memories and boosts our mood.”

But Lauren explained that music can provide proven benefit to those with dementia in particular. She told us, “We know music has this deep effect on us. But there was this research, done by a parlimentary group, that showed that for 67% of people with dementia music reduces irritability and the need for medication.”

Lauren also shared that she has a personal connection to the benefits of music – revealing that it helped her dad and her family massively during his long illness, before his death last year.

“There are real, cognitive emotional health benefits to these sorts of things. And coming out of that experience with my dad, I saw how beneficial it was to him and how much it helped him to maintain his identity.”

“After he died I thought it would be a great thing to try and help other family’s benefit in that way – and it was about a week later that I was approached about this campaign. So it was good timing”.

One can only imagine how stressful it was for her family when her dad was ill; the pain of losing him but the fact music helped ease that stress and bring them all together in those precious final days cannot be understated. I wonder whether there are going to be any initiatives but, as I am writing about later, it is not all bad clinging onto the pass.

 PHOTO CREDIT: Getty Images/Music for Dementia 2020

We are told that nostalgia should be doled out lightly and we cannot hang onto the pass. I think, the more the mainstream grows gloomy and loses its smile, the less memorable music is. One of my fears is losing the memories that connect me with my past. The majority of the songs that are lodged in my memory are in a major key or have a cheerier tone. Were it not for the music I was exposed to at a young age, it is debatable whether I would be a music journalist and have such a passion. From a very young age, I was exposed to my mother’s vinyl collection: records from The Beatles, Steely Dan and The Faces; rarer treats from The Ozark Mountain Daredevils and, as one would expect, classics from Pink Floyd, Led Zeppelin and Kate Bush. All of this love (she had) for music rubbed off on me and informed me as a child. It seems idle and cheap to throw in romantic visions of childhood but I recall the first album I bought (maybe, worryingly, it was Now That's What I Call Music! 24) and the early songs that I was listening to. There are lots of times where music played an important role but, when I was young, I had a go-kart – my grandad constructed for me as a present; it was a pedal one and had a bar at the back where one could stand – and a friend used to be on the back with a red cassette player/boom-box. Whether it was Michael Jackson, T. Rex or The Beach Boys, these artists filled our ears and made life very sweet.

I grew up around artists as eclectic as Del Shannon, Bob Dylan and Carole King and digested every note I possibly could! The fact I can clearly remember riding that go-kart is because of music. I remember buying my first album at a local record shop on double-cassette and revelling in songs from k.d. lang, Duran Duran; Snow, Shaggy and Lenny Kravitz. I can recall where I was when listening to The Prodigy, Beastie Boys and Jamiroquai – playing football after school – and why Basement Jaxx’s Red Alert and Sixpence None the Richer’s Kiss Me played different roles in 1999 (a girl I fancied was with a friend of mine at our prom and it was a bit heartaching to see!). Coming back from family holidays, it is amazing why music from those moments remains. Maybe it was the fact I was happy during these times but the importance of the music is clear and have stayed in my mind since childhood. I do not recall memories from around those times; conversations and other scenes are gone but certain songs are with me; they open up scenes and images like a Michel Gondry mind-f*ck video. It is clear that music bonds us and is that common voice that makes our childhood so good; that scores these important times and gets lodged into a part of the brain that other memories do not. I have musical memories as old as thirty-plus-years and hope that they stay with me for decades.

So many other memories have gone and so it is thanks to music that I can vividly remember parts of my childhood. Just listening to certain songs casts my mind back to particular times and what I was doing. Take The Beautiful South’s Song for Whoever or Bob Marley’s Iron Lion Zion; The Beatles’ Rubber Soul and The Bangles’ Eternal Flame. I think of these songs and can instantly transport myself back to when they first arrived in life. It is quite emotional recalling the times but music is the common theme. When depressed, I have turned to music to keep me going and give me perspective. So many of us are stressed and anxious and conventional medicine/therapy is not always helpful. It is hard know what course of treatment works for complex individuals but there is something simple with music that reaches us all. I am touching on this later but think about joyful songs such as Deee-Lite’s Groove Is in the Heart. That 1990 anthem is not powerful enough on its own to cure depression or make someone happy but it provides a blast of infectious fun that can make a bad day good. A single song can bring a smile and, for someone with dementia, that sort of emotional response should not be taken lightly! I have only touched the surface of music and how it has impacted my lie but every individual has their own stories.

 PHOTO CREDIT: @rocinante_11/Unsplash

Most of my early musical memories revolved around buying singles and physical albums. I recall getting the bus with my mates to buy singles from The Divine Comedy, Terrovision and Oasis back in the day. I loved the feel of an album and sharing it at school. A lot of people with dementia had a similar experience and now, as music is mainly digital, it is harder to get a handle on everything coming out. I applaud those who pay for music and do not stream for free but there should be expectations for those with dementia. The fact music can enrich their lives means that we should not be charging them. More than that, music can calm nerves and help recall memories; it can help loved ones seeing their relatives fade away and help with issues around mental-health and even physical injury. There is a community and sense of togetherness you get from music and, as Vicky McClure’s T.V. show proved, something as simple as a choir can make a huge impression. I know the Government has a lot on its hands right now but they should help make music free for everyone with dementia. Streaming sites like Spotify and Tidal need to do their part and realise why those with dementia can benefit hugely from free music. We are not asking for anything huge when it comes to those who suffer a horrific and frightening illness: make music free for them and help bring about improvement and positivity.

Age UK wrote about dementia and how it unlocks memories:

The power of music, especially singing, to unlock memories and kickstart the grey matter is an increasingly key feature of dementia care. It seems to reach parts of the damaged brain in ways other forms of communication cannot.

'We tend to remain contactable as musical beings on some level right up to the very end of life,' says Professor Paul Robertson, a concert violinist and academic who has made a study of music in dementia care.

'We know that the auditory system of the brain is the first to fully function at 16 weeks, which means that you are musically receptive long before anything else. So it’s a case of first in, last out when it comes to a dementia-type breakdown of memory.'

Many music students throughout the UK, as well as more experienced musicians, now regard care home visits as part of their learning experience. As well as being enormously beneficial to those with various forms of dementia and their carers, they can also be helpful and rewarding for the musicians themselves”.

I am worried about old age and what it can bring but I know that, with support, research and awareness, there might be a cure for dementia one day. Make sure you check out Music for Dementia 2020 and help spread the word. We all seem to take music for granted because we play so much every day. There are people out there who are not so lucky and go through a lot worse than we do. A cure for dementia is not on the cards yet but, if we can harness music and make it freely available to dementia sufferers, then that is a really positive step. Music is not just sounds that we can hum to and dance along to: for many people, it can recover memories that they thought were…

LOST forever.