Pippa Kelly …

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

I’ve always had a soft spot for John Humphrys, who retired from R4’s Today programme this week after 32 years in the role.  Perhaps it’s because he’s a Welshman and I undertook my postgraduate journalistic training in Cardiff or it could be that, like him or not, he’s undoubtedly a persistent and skilled interviewer.  As many of those paying tribute to him said, in canine terms he’s more of a terrier than the Rottweiller label he’s so often given.

But I think what’s really endeared him to me in these last few years is to hear the hard man of the airwaves reveal sensitivity when interviewing people with dementia and their loved ones.  It’s always more moving when someone you don’t expect to have a soft side, shows it publicly.  Mr Humphrys did so at the end of his final Today programme, his voice cracking as he gave his thanks to the great British public for putting up with him for so long.  It was as unusual as it was moving to hear the great man struggling for words.

Earlier in the programme, the BBC’s director general Tony Hall also mentioned this unexpected, sensitive aspect of his colleague.  The DG wondered aloud if it was down to the haunting impact on Humphrys of the 1966 Aberfan disaster in which 116 children and 28 adults were killed when a colliery waste tip slid down the mountain side onto the village school.  It must have done: the young Humphrys was the first reporter on the scene and he’s subsequently said that throughout his decades of covering wars and disasters all over the world, Aberfan remains the worst.

Pam Schweitzer, founder of the European Reminiscence Network, in action at a Remembering Yesterday, Caring Today event

Of course the ups and downs of our lives make us who we are and shape our responses to different events.  We in the dementia sector are only too aware of this, hence our respect for the power of reminiscence work and music that has had a special place in someone’s life.

Listening to Lord Hall’s words about the retiring interviewer (I’ve just realised the wonderful irony in that phrase), I was reminded of an interview that Humphrys conducted with Denise Stevens, a woman caring for her husband with dementia.

The interview was unusual from the start.  Humphrys began by reflecting on his own father’s dementia and the way, towards the end, he had “turned his face to the wall” and died.  This personal note set the tone for a radio item that had the feel of a conversation between two people with a shared experience, on which we listeners were eavesdropping.

Throughout the piece Humphrys displayed nuanced understanding of the complexities of Denise’s life as someone caring for a loved one with dementia.  He said that of all the voices he’d heard on the subject hers was the most compelling, and that her experience gave her a moral authority.  The interview was five years ago; it moved me to such an extent that I blogged about it here https://pippakelly.co.uk/2014/09/the-unending-grief-of-the-dementia-carer/.

When dementia touches you personally it changes your attitude towards it.  I mentioned this in my essay on stigma in the latest Alzheimer’s Disease International report, launched yesterday (see p95 of the report).

Questioning whether the media’s role is a help or a hindrance when it comes to diminishing stigma, I argued that the dementia community and the press could benefit each other.  I said it was up to those in the dementia sector to provide the media with strong, human interest stories to inform the general public about the condition and thus help to diminish stigma (which springs from a toxic combination of silence, ignorance and fear).

“Once a condition such as dementia is given a human face, your attitude towards it changes.  Gone is the stigma and fear: mum may be behaving in an unusual way, she may be incontinent or unable to speak properly, but she’s my mum.”  I went on to explain that this phenomenon accounted for the power of celebrities in combatting stigma.  The public think, bizarrely, that they know them.

Which is just one of the reasons why John Humphrys’ interview with Denise Stevens, conducted as it was in front of 7 million listeners, was so important.

Earlier this week I spoke about the power of compelling human stories to bring about change at a health and care leadership event.  Anyone who knows me will be all too familiar with my love of stories (or rambling on, as some might put it).  Preparing for my talk, I thought about why the telling and retelling of human experiences resonates so much with other people and how we might most effectively use this connection to help deliver positive changes, whether in the health and care sectors, the dementia community, or broader society more generally.

We humans connect to each other through our emotions.  As I said to health and care leaders at Frimley leadership and improvement academy, the most common reaction to the talks I give about caring for my parents is, quite simply, thank you.  (My mum had dementia, my dad had a series of strokes that left him bedridden, immobile and being fed by a tube in his stomach).  I think I articulate, and reflect back to them, my audiences’ and readers’ own attitudes and responses to the difficult times they are, or have been, going through.

It’s my skills as a journalist, a communicator, that allow me to do this.   And in so doing I hope to bring about small changes in the way we all think about those with dementia and older people, and how we care for them as a society.

In my early blogs I often used to muse about “joining the dots” – by which I meant discovering people’s stories, making connections and writing them up.  This week, for me, has been all about links: from the BBC’s retiring, irascible, yet sensitive inquisitor and his deep, somewhat surprising empathy for Denise Stevens, to the audiences and readers who express gratitude to me simply because I’ve told them openly, truthfully (and hopefully fluently) about what my family and I went through.

We humans are a sociable, tribal breed.  We love sharing stories.  We love to connect.  All I do is to tap into this natural human desire and then ramble on about it.