Thanks For The Music – why dementia is a team game

An envelope arrived in the post the other day from Southampton university.  In it was a map – a Map of the Tracks.  Intrigued, I unfolded the purple and pink paper to be met by names and places that swept me back to my uni days.

There they all were: Swaythling, Burgess Road (it had a good bakery that sold a mean iced bun), Bitterne Park, The Avenue.  I had a sudden, painful recollection of cycling up Portswood Road, battling against icy winds to get to my Monday morning lecture on Paradise Lost.

More enticing were the questions posed beside these evocative locations.  “What memories do you have?  Do you think of a particular time and place? Is it the union back in the ‘60s?”  Er, not quite – I was still in short socks then.

But imagine my delight at seeing these words: “What about the music of the time?  We want to know which track takes you back every time you hear it”.

Excellent!  And easy too.  Joni Mitchell’s Big Yellow Taxi skids to a halt and I’m in my dingy little room in Montefiore Hall – a large, rundown place in which a handful of other girls and I occupied the only female floor.

Needless to say, I soon found myself a boyfriend.  Jon played Pink Floyd’s Another Brick in the Wall on a non-stop loop as he made endless cheese toasties in a special machine, the likes of which you never see now.  Ian Drury and the Blockheads played at the Gaumont.  I saved up to see them: Ian – and his rhythm stick – were fab-u-lous.

How quickly music summons up your past, as all of us involved in the dementia sector know only too well.

Another Ian – Big Ian Donaghy, care trainer, musician, author, speaker – popped up on my Twitter feed last week asking similar questions to my old alma mater.  “What songs take you to a point in your life and break your heart?”

My answer was swift:

Once in Royal David’s City: mum & I listened to the Nine Lessons & Carols from King’s College on Xmas Eve, day before she died. She had v severe #dementia by then & mainly slept but when she heard it she opened her eyes. Can’t hear it without my heart crumpling”. 

Plenty of other tweeps joined in with their thoughts. 

The Big Man was seeking songs for a choir to sing at the Care Show in Birmingham, where he was a keynote speaker.  This wasn’t an official choir, a Singing for the Brain choir or a community choir, but one that Ian created by dashing around the conference asking anyone and everyone if they’d like to join in his session at ten past two.

Such is the forceful passion of the man that 200 people – care staff, managers, owners, influencers, singers and non-singers, the tuneful and the tone deaf – joined him and his guitar to belt out songs.  Ian’s mantra is “Dementia Is A Team Game” and he’s nothing if not inclusive.  It lies at the heart of all that he does.

Big Ian knows only too well the power of music to connect to those with even severe dementia.   When his mother-in-law Liz died a few months ago aged 66 she’d been living with dementia for several years.  Ian says that right up till the end, when everything else had been taken from her, Liz was still singing.  She had created a playlist with 200 songs, including John Denver’s Annie’s Song and Leaving on a Jet Plane (two of my favourites), which all her carers knew.

At 49, Liz chose all the music for her funeral.  This was very important: the family were able to respect her wishes because they knew what they were – so often loved ones are left guessing.   Whenever a song Liz liked came on the radio, she would say she wanted it at her funeral.  “I used to joke that her funeral would be like Live Aid with a box!” Ian tells me.

In the last year or so Big Ian has made several short, punchy films highlighting his love for music and his passion for bringing it to those with dementia.  One of the most moving involves yet another Ian.  In his mid 60s, he has progressive supranuclear palsy which means he can no longer communicate verbally.

Big Ian visited him at Landermeads care home in Nottingham and, hearing that his namesake used to enjoy Paul Young, decided to play his guitar and coax him to sing a duet.

“It was astonishing,” says Big Ian.  “He had the room in tears.  By the end he was leading the song – there were parts where he came in before me and then, at the end, when he sang ‘Every time you go away, you take a little part of me,’ he tugged at his shirt and motioned at me”.  I’ve watched it and warn you now: you may need a hanky.

Big Ian is right.  Dementia is a team game.  If we all join in it makes a difficult situation better.  At the beginning of the year I wrote a blog about togetherness which struck a cord with readers.  Musing on the way we humans invariably think in terms of “them and us” rather than “we” – those living with dementia versus us or those who are old versus us – I concluded that this division helped breed stigma.

Before my mum was diagnosed with dementia I knew very little about it – I metaphorically crossed the road to avoid it.  Once she developed the condition, my view of it altered irrevocably and very much for the better.

I wrote in my blog:

“She was my mum.  So, she happened to have dementia.  She was still my mum, with her big heart, her eccentric ways and her numerous faults.  At a stroke my attitude changed and any notion of dementia existing somewhere else, over there, in other people’s lives, evaporated.  We are all in this together”.

My words echo Big Ian’s philosophy.   The man’s a musician.  He’s also a showman with a massive heart.  He knows the power of music to break down barriers and connect – hence his impromptu choir.

As he tells me, “If we all join in no one feels uncomfortable.   If we’re all ridiculous, no one’s ridiculous.  It’s like if you and three mates start dancing, then it’s alright because somebody has broken the seal”.

Immediately I’m transported to the uni bar.  It’s a Friday night circa 1981 and I’m grooving round my rucksack of books to Kim Carnes’ Bette Davis Eyes.  Of course I am.   So is everybody else.  Aren’t they?  If they’re not, they should be.

My graduation from Southampton University in 1982, with mum & dad

2 Responses to Thanks For The Music – why dementia is a team game

  1. Norrms Mc Namara 16th October 2019 at 11:33 am #

    Feedback from our very successful MP3 Programme for those with dementia , now supplying 100s of care homes and 27 NHS trusts around the UK

    The principle behind the MP3 players is amazing – music makes such a difference to inpatient care within general Hospitals (offering an opportunity for patients to be stimulated and secure improvements in 1:1 engagement ).

    We find that our patients tell us that days are lengthy, with little to keep themselves and their brains active.

    The introduction of music therapy within the Trust has offered some of our patients a bridge to engagement, with memories flooding back and an opportunity to reduce distress and familiarise to an often very unfamiliar environment.

    Other patients are reporting back that the players create a sense of personal and private space – a break from the reality of their Hospital stay.

    We acknowledge that the benefits of music as a non-drug therapy can be truly significant, there is a body of research that shows that in scientific terms, music releases the chemicals Dopamine and Serotonin within the brain making patients feel less Anxious, Depressed and Distressed.

    We also acknowledge that research supports that music therapy can have a positive effect on a person by calming, motivating, lowering Heart Rate / Blood Pressure and aiding the control of pain.

    The most remarkable effect we are finding, is that of memory recall – a key symptoms within Dementia.

    It is important to note that even in the latter stages of Dementia, patients still have recognition memory – the MP3’s help tap into this.

    Purple Angels have been an amazing contact for the Hospital – offering the units free of charge for us to use within our inpatient areas. This has helped us to further build our resources around offering non-drug related therapy, and is aiding us to secure improvements in patient experience and inpatient journey.

    Patient 1.

    Patient X was struggling with Sundowning symptoms and becoming extremely distressed as the day went on…. we have found the introduction of music via the MP3player earlier in the afternoon, as having a positive impact on the patient – reducing distress and helping anchor to time and memory.

    This has positively impacted the Sundowning symptoms which have reduced due to increased cognitive stimulus earlier in the day.

    Patient 2

    I love the music on the MP3 player, it makes me feel like I am somewhere else other than in Hospital.

    This is really important as it helps my anxiety and makes me feel more settled and less distressed.

    The ward staff have encouraged me to use music to relax, when I came into Hospital, they asked what my likes and dislikes are and when I said I loved music – they found me an MP3 player with personal headphones.

    I love it !

    Patient 3

    We have used the MP3 player for a lady who was struggling to engage in communication, we used the player as a mechanism for therapeutic engagement.

    Patient X did not like the TV, and was also very distressed in group settings.

    At times, we found that she would become distressed and frequently cry out. The MP3 music really settled her, we also found that it aided her communication.

    We asked relatives what playlist would be best and they picked the 55-75 one. She clearly loved this, as she listened intently with a fully animated face.

    The introduction of music brought a smile to her face.

    Patient 4

    Relative : I hadn’t even thought about music as distraction therapy.

    Especially through a personal player.

    MP3 players seemed ( in my head ) so very complicated and not something that I would even of ever considered using.

    But the little unit is so simple and easy to use ! and I love it as much as my Husband loves it !.

    A whole music collection, tiny enough to fit into his top pocket ! .. now fancy that …

    Memories through music, the songs bring back such happiness for us both.

    A little box of joy !

    Patient 5.

    Carer feedback … “what an amazing resource …

    Thank you !

    I really believed music couldn’t help until it was recommended by my Admiral Nurse, my Husband is still very active and is on his feet most of the day but often he’s wandering looking for things or just feeling the need to move and anxious.

    The difference the MP3 has made, is that he’s smiled … music has gone with him on his journey … yet the length of time he paces is shortened and he’s taken to sitting in his armchair again listening … just listening … he seems to like the music and it seems to really make him feel at peace with the world “

    Five case studies, all different but with amazing impacts
    Thank you Norms
    Kindest Regards
    Kerry Lyons
    Admiral Nurse

    • Pippa Kelly 16th October 2019 at 3:22 pm #

      Thank you Norms. So many people gain so much benefit from music – your five case studies illustrate this brilliantly.

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