My first video podcast

Welcome to my very first video podcast – or vlog!  It’s the introductory episode of an occasional series and in it I chat to my childhood friend, distinguished broadcaster and journalist Sue Saville, about my family’s dementia story.   (Best viewed, if you can bear it, in full screen, by clicking on the four small arrows to the left of the word “Vimeo” in bottom right hand corner). 

And once you’ve watched it, do feel free to leave me a comment or suggest who or what (in the way of dementia organisations, charities, social enterprises etc) you might like me to talk to, or about, in future. 

Continue Reading

Our Dementia Choir

Line of Duty’s Vicky McClure presents Our Dementia Choir on BBC1. Credit: BBC/Curve Media

At one point in BBC 1’s Our Dementia Choir, the wife of 67-year-old Chris, who is living with the condition, says to Line of Duty’s Vicky McClure, “What you’ve given Chris is unbelievable”.

And it is.  For Chris’s rare type of frontal temporal dementia affects his behaviour more than his memory, making him unpredictable, uninhibited and unable to express his emotions.   He and his wife both worked full time and then – “Wham bam!” as Jane puts it – because of Chris’s condition they are forced together 24:7.

“It’s like your dream come true,” Chris chips in.  Jane lets out an instinctive, contradictory expletive and in an instant we see behind the veil of normality to a world – Jane’s world – in which days run into nights because Chris doesn’t always sleep.  It’s life with dementia in all its more-than-difficult, sleep-deprived reality.

Yet – and here’s the magical, unbelievable bit – after several weeks in a choir consisting entirely of others who, like him, have dementia, Chris is able to express emotion; he cries as he sings the song they’re rehearsing.  When Jane asks why, Chris says it’s because the words mean so much to him.

I was lucky enough to have a sneak preview of the two-part documentary and it’s compelling viewing – poignant, yet uplifting too.  Testament to the fact that there is life after a dementia diagnosis.

If you’re not familiar with the Beatle’s ballad, In My Life, do look it up.  Its lyrics are all about not being here anymore, about forgetting things and people – about enduring love.  Jane reveals that she and Chris stood in the kitchen in floods of tears, saying how much they were going to miss each other.  It was a moment of sadness, but also of connection; proof, if any more were needed, of music’s extraordinary powers for those with dementia.

McClure puts it better than I could.

“In some ways it wasn’t all sad, it was a lovely feeling.  To be able to cry with your partner and have a moment when you’re both on exactly the same page and you can be there – that’s why we’re doing this”.

McClure has boundless empathy & is the perfect presenter for Our Dementia Choir. Credit: BBC/Curve Media

McClure, unlike her scarily emotionless onscreen persona DI Kate Fleming, has boundless empathy and turns out to be the perfect presenter for an informative, sensitive, honest – but above all profoundly moving – programme about a group of individuals living with dementia who come together to sing.    She saw how music helped her adored Nana Iris (or Nona as she calls her) by “changing her mood, calming her down and, for a while, bringing us back the old Nona”.

Of course McClure is saying – albeit with the full force of the BBC behind her – what so many of us in the dementia sector have been saying for years.  That music really does help.  And she doesn’t just say it, she teams up with scientists exploring pioneering techniques to reveal how music can restore a brain damaged by the condition.

Sebastian Crutch is professor of neuropsychology at the Dementia Research Centre, University College London.  He calls music the “special ingredient” for those with the condition – and, needless to say, he and his expert medical colleagues are delighted with the findings of their ground-breaking experiments involving the dementia choir.

To be honest, while scientific evidence is necessary and invaluable, the truth is there for all of us to see when we watch videos such as Alive Inside, showing how music radically improves the lives of people in even the most advanced stages of dementia.

I unwittingly tapped into this potent force when I switched on the radio so that my late mum (who lived with dementia for her last decade) could listen to the traditional Christmas Eve Service of Nine Lessons and Carols from King’s College, Cambridge.  Mum had been sleeping in her nursing home bed for several weeks – then, as the chorister sang the opening bars of Once in Royal David’s City, she opened her eyes.  It was all she did, but it was enough.  A connection had been made; and this knowledge was of immense comfort to me when, the following day, mum died just moments before I arrived (I later wrote about it in The Telegraph.)

It’s one of the many reasons why I’m campaigning for the BBC to take up soprano Lesley Garrett’s brilliant idea for them to reintroduce their old radio programme, Singing Together, which I remember from my schooldays, this time for older people and those with dementia.  Given that, scandalously, just 5 percent of care homes have access to quality music therapy – the reintroduction of Singing Together would, at a stroke – or at the push of a radio button – provide thousands of people with life-enhancing benefits they can otherwise never enjoy.

Unlike me, or probably many of you reading this, the majority of those watching Our Dementia Choir will be unaware of music’s potent force.  This will change after they’ve witnessed its effects on Chris and Jane, or other choir members such as 91-year-old Eileen who has advanced Alzheimer’s disease.  After a few minutes singing She’ll Be Coming Round the Mountain with music therapist Chris Wilson, Eileen becomes animated and talks and moves about far more.  She comes alive – there’s no better way to put it.

On the night of the performance in front of a 2,000 strong audience at Nottingham’s Royal Concert Hall there’s not a dry eye in the house.  Choking back emotion, McClure says she’s never felt a room filled with such love.  She closes the programme with a tribute to her Nona.

“This is her.  This is why I’m here – so she’s having a real legacy and I’m proud of her for that”.

I know just how Vicky feels.  It’s because of my proud, flame-haired mum that I’m sitting here now, tapping out my dementia blog, tears sliding down my cheeks.

Musical director Mark De-Lisser conducts Our Dementia Choir. Credit: BBC/Curve Media

Continue Reading

The Art of Living

Photo credit © Royal Academy of Arts, photographer: John Hammond

What do you see when you look at this painting?  A couple in the foreground who look a bit bored in what looks to be a gallery or artist’s studio?  Or perhaps your gaze goes straight to the collection of impressive looking busts and the striking white horse which, it suddenly hits you, is bang in the middle of the piece.  No coincidence, surely?

These thoughts and questions were raised by a bunch of about 16 of us gathered in one of the fine collection rooms of London’s Royal Academy the other morning.  None of us knew what the painting was called, or who it was by.  We were simply observing closely, guided by two experts. Within the space of a few minutes we had been drawn in, our day to day lives forgotten, our attention riveted on a piece of painted canvas.  Another world.

Dr Brian Morris, 76, wondered why the slumped, seated figure on the right had no head.  It could be, explained Kim Jacobson, one of the artist educators steering the discussion, because the woman was bent over, her back to us so her head was obscured.  An explanation which, on careful examination of the sculpture in the painting, seemed eminently feasible.

Penny Davis observed that the woman in the foreground seemed to be keeping herself to herself, that there was a calmness about the couple.   There was broad agreement that the pair knew each other and were comfortable in each other’s company.  As to their relationship, a long debate ensued as to its nature – friends, uncle and niece perhaps, or father and daughter, lovers even?

The great thing about the morning was that each contributor’s opinion was as valid as the next.   Unless I’d been told I wouldn’t have known that at least half those present were living with dementia.  For we were all enjoying one of the Royal Academy’s monthly Monday morning art, coffee and conversation sessions for people living with the condition (for more information, see the link here)  .

It turned out that Dr Morris, attending with his wife Marian, had been diagnosed with Alzheimer’s six years ago.  “Brian has good days and bad days” she told me.

“Coming to the art session gives him a good day because he’s living in the moment and not worrying that he’ll get something wrong – his opinion of the painting is as valid as that of the person sitting next to him”.

Penny Davis and her daughter Harriet at the Royal Academy

Seventy-seven-year-old Penny who had come with her daughter Harriet was diagnosed in 2016.

Here, in the Lee and James C. Slaughter room of the Royal Academy we were all existing in the here and now, in front of an intriguing painting, free to say as much or as little as we wished.  No labels.  No discrimination.  No stigma.  For myself, I found it very refreshing to take time out of a busy life to simply stop and stare and think.

The morning, with its emphasis on living in the moment, reminded me of an early blog I wrote about a report with some innovative ideas on how to improve the lot of those with dementia.

One the most controversial suggestions of the report, commissioned by Red and Yellow Care (now rebranded as Halcyon Doctors) is that in the process of helping people with this cruel condition to live well, too much emphasis is placed on memory, on things as they once were, instead of things as they are.  It’s a notion that defies conventional thinking, which often sees those with dementia being surrounded by objects and photographs from their past in an effort to make them feel happier and more secure.

The report cites Nobel Prize-winning psychologist Daniel Kahneman, who draws a key distinction between what he calls the “remembering self” (our memory of our experiences) and the “experiencing self” (the elusive here and now which those of us with busy lives rarely stop to dwell in).  Kahneman suggests that we should all suppress our “remembering selves” a bit and focus more on the present.

The report says that Kahneman’s theory has implications for those with the condition. “One might even argue that the growing inability of people with dementia to remember – coupled with their often uninhibited approach to enjoying happenings in the moment – has something to teach those without dementia about the value of the experiencing self”.

When the actor Timothy West spoke of his wife Prunella Scales losing the ability to remember things very well because of her Alzheimer’s, he described how much the two of them enjoyed their leisurely canal trips.   “You don’t have to remember things on the canal.  You can just enjoy things as they happen – so it’s perfect for her”.

Meanwhile, back at the RA, we finally discovered the name of the painting.  It was Tea in the Studio,  an oil on canvas painted in 1932 by Arthur George Walker RA and the two people having tea were in fact the artist’s brother Harold and a friend.

This was intriguing.  But in the scheme of things it wasn’t really that important.  What mattered was the taking part.  The discussion.  The engagement.  The stimulation.  All of us, to paraphrase Kahneman, let go of our piled-up cares, the other bits of our lives, and focused on what was in front of our eyes in the here and now, on our experiencing self.  It was rare, and wonderful.

Occasionally, just occasionally, dementia throws up a tiny morsel of something good to think about.  At the Royal Academy the other Monday morning, it did just that.

Continue Reading

Carers

This week seems to be all about carers for me.  I opened my inbox to find an email from one of my oldest friends.  Her mum, diagnosed with dementia the year before, died last autumn aged 85 and now her elderly dad, a partially-sighted diabetic, has developed dementia and is struggling to live alone after over 60 years of married life.   Sad and difficult times for a family I’ve known since I was a nipper.

My friend wondered what questions she should ask three agencies she’d contacted seeking live-in care for her 92-year-old dad.  All three have been awarded Outstanding by the Care Quality Commission, which sounds like a good start, and Linda had already enquired about what was expected in terms of the carers’ accommodation, and about rotas, money and food.

But we all know that nothing beats meeting carers face to face, sounding them out, getting to know them.  People are nothing else if not individual.  As is Linda’s dad.  A lovely man who never quite lost his Nottinghamshire accent despite having lived in Surrey for over seven decades.

What you want, of course, as my mother-in-law identified when her husband needed extra help in his final days, is a blend of professionalism and compassion.  It’s the holy grail of social and healthcare.

Sometimes, fortune smiles on us relatives – as it did with me and dad.  Caught off guard one Friday night (it’s always Friday isn’t it?) by a GP’s call informing me that dad had suffered a stroke and needed 24 hour care immediately I phoned around care agencies with a growing sense of panic.   No one – good, bad or indifferent – was available for at least two weeks.

In desperation I phoned my mum’s nursing home, whose manager saved the day.  “I’ll put in a call,” she said.  The next morning, Saturday no less, Martha arrived at my father’s flat at 8am.  She stayed three years, until dad died.  She was a God send.  A natural carer with a loving touch and a warm heart.

Originally from Zimbabwe, her English wasn’t perfect, but it didn’t matter.   Within a few weeks dad’s rheumy eyes followed Martha’s every move, and in his final months this church-going, middle-aged mother came to mean more to him than any of us family because, with quiet, seemingly infinite patience, she performed the most intimate tasks for him.

Before Martha, before dad needed formalised, live-in care, there was Marius.  A young Polish lad who worked for a charity (so was CRB checked) and did the odd stint at dad’s favourite local restaurant.

When I realised that dad needed a hand with shaving, washing and cooking, word came to me that Marius might like to help out.  I went to meet him before his lunchtime shift at the Rialto in Dorking.   Two hours and three cappuccinos later there was no doubt in my mind that Marius was the one.

Dad, who’d come across several Poles while serving with the Royal Signals in the second world war, loved them.  He didn’t speak Polish but he did speak French, and so did Marius.  The two of them enjoyed chatting en français for hours on end – Marius’s accent was better than dad’s but that didn’t matter, the important thing was that they got on.  Like a house on fire.

In Marius and Martha, I had stumbled across carers who perfectly suited, not just dad’s needs at the relevant times but, just as importantly, his personality – and him.  This feeds into my argument that care homes for those of similar backgrounds – such as the Royal Hospital Chelsea for army veterans, London’s Denville Hall for retired actors and the much-lamented Pickering House in my home town of Dorking, Surrey for ex-journalists (which closed last year) – provide immediate connections and topics of conversation for those who live there.

Recently I came across Elder, a live-in care specialist that matches your loved ones with experienced, vetted carers.  I haven’t tested Elder’s claims but am very much in favour of their advertised offering and will investigate and report back in a later blog.

I was reminded of Marius when I read of the Government’s drive to recruit thousands more care workers, specifically young people.  The Every Day is Different campaign is being promoted on social media platforms and online sites through this month and next to encourage under-40s to take jobs such as care workers, therapists and activity co-ordinators.

It comes as a report by the Health Foundation charity says that a lack of community staff may damage the NHS.  The recruitment drive focuses on the rewarding and diverse work to be found in care – something that many of you reading this won’t need to be told.

But while many of the young care workers involved in the campaign have inspirational stories to tell, they talk too of the poor pay and lack of career structure.  Twenty-two-year-old Greg Mather is a final year degree student who has been working part-time as a domicile care worker for a year.

He told the BBC, “It has been hugely advantageous to me in the long term as it has provided me with amazing experience in working with vulnerable adults”.  But adds that it is not enough to say that ‘you’ll feel so rewarded after each shift’ if you are paid so little.

“For such an emotionally and sometimes physically demanding job it is shocking that the majority of care workers are paid the minimum wage”.

I couldn’t agree more.  In 2013 I wrote a Thunderer column for the Times arguing that as a society we outsource the care of our elderly relatives to formal carers, pay those carers peanuts (less than my then 15-year-old daughter received for babysitting), fail to provide carers with meaningful training or to recognise the complex emotional and physical demands they face and then moan like stink about them.  In six years nothing much has changed.  Now there’s the added worry of a post-Brexit world.

To return to my old friend and her dad, and hopefully end on a more positive note, if any readers have further suggestions for questions that Linda might ask potential agencies and their live-in carers could you leave a comment or DM me on Twitter.  Likewise, I’m happy to pass on the names of the three agencies Linda has approached if you contact me privately – and keen to know your views on them.

Continue Reading