Seven years ago on a gloomy Monday morning I went to see a group of dancers rehearsing in a nondescript portacabin in south-west London.   So far, so very inauspicious.  And yet I saw magic happen that day.

Now, through the alchemy of creative art –the skilful movement of bodies to music, the careful listening to, and observing of, one human by another – the project has flourished.  Myriad events have taken place involving dancers, composers, musicians and individuals and their families affected by dementia in both the UK and internationally.

The force behind it all is choreographer and psychotherapist Beatrice Allegranti, who has an abundance of understanding of the human condition and huge creative talent.

This impressive woman has harnessed her skills (she is also an accomplished writer and feminist scholar) to produce Moving Kinship, a book charting her decade long research of people living with early onset dementia, as well as deep research into many of her other interests.

Obviously,  I was immediately drawn to the chapters on dementia.  The language is scholarly and dense, but the common threads are there – just as they were in the performance I witnessed on that dull Monday morning.  For me, the book’s overwhelming theme is the reciprocity, care, love and knowledge that flows between the dancers and those with dementia, giving a new depth of meaning to the term collaboration.

“We’re not pretending to have dementia. We put ourselves in it,” said one dancer.  “In rehearsals I felt like I was receiving something in return about my life that I can carry – it’s something that really shifted my life”.   Within the Moving Kinship hubs (creative spaces where, through dance and choreography, individuals and groups engage with loss, grief and oppression) there is no them and us.

“It feels like we are creating an umbilical cord between the performance and participants”, says Takeshi, a dancer whose own father had young onset dementia.

The learning, the flow, the communication is open.  There is nothing didactic or formulaic about it.  Knowledge is as freely given as it is received – by dancers, those living with dementia and their loved ones.   Describing the experience, dancer Takeshi says, “It felt like opening some precious gift, like it was a giving back.  Being witnessed by the families was a crystallisation of these last few months – and also makes me think about this process of dementia, transforming.  It’s becoming a positive thing”.

Aneta Zwierzynska & Takeshi Matsumoto
Photo Julia Testa

After another dance performance, Keith who lives with frontal temporal dementia and some others in the group join Allegranti and the dancers for an improvisation.  Allegranti records how Keith seemed unsettled as he stood next to her, his eyes brimming with tears, starting to speak, “pronouns almost disappearing, syntax ebbing away”.

Keith articulates a few words, “I see.  What you are doing.  Beautiful.  Thank you”.  And for me, reading Moving Kinship, Keiths’ halting words have a powerful beauty of their own.  They are his.  He utters them for us and we make of them what we will.

Beatrice notes that the eyes of one of the dancers are also brimming with tears.  “I felt naked and vulnerable and disarmed in the performance,” says Luke.  “It felt different to any other performance that I’ve done.  I had that feedback from Keith.  He was looking at me directly in the eyes, and he was crying and staring back at me, and that’s the best response I’ve ever had to anything I’ve ever done.  Better than a standing ovation”.

Luke’s words bear strong echoes of those spoken by internationally renowned mezzo soprano Louise Crane, who I saw singing with Jukebox Opera, a project in which a small group of top-flight opera singers perform short, bespoke pieces for those who are isolated or vulnerable, including those with dementia living in care homes.

Louise told me that when she was first asked to be involved in the project she turned up her nose.  “How wrong was I? I would describe this as one of the most rewarding things I’ve ever done in terms of audience response and personal satisfaction,” she later told me.

Reading Moving Kinship – at least the chapters that relate to dementia – also reminds me of Suzy Webster, whose parents came to live with Suzy and her young family when her mum developed dementia.  In our latest podcast, which you can hear here, Suzy says that, as challenging and difficult as dementia is, she and her family learnt from her mum as she lived (and died) with the condition.

“We learnt from her and we are different people because of her. The gift that my mum gave us was more than anything she could ever have done without her dementia.  We still would have wanted to have had a life without dementia, of course, but there were many, many things that it gave us. Mum wasn’t just someone to be looked after, she was looking after us, too”.

This reciprocity, this learning from those who are sometimes, quite wrongly, seen as lesser or diminished individuals whose only role is to be cared for and done to, is my biggest take away from Moving Kinship.  So it seems only fitting that at least one of the dancers is Japanese.

One of my earliest pieces on dementia concentrated on the three eras of dementia care in Japan (see here). The first two eras were that of cure (when people with dementia were commonly regarded as no longer able to understand, placed in care homes and given medication); and that of care which, though laudable in its aims, introduced pioneering therapies, such as music and reminiscence, that were foisted on care homes without consultation.

But then, in the early 2000s came the era of reciprocity, when people were regarded not as care givers and care receivers but as “treasured partners”, a phrase imbued with respect.  This era placed emphasis on everyone sharing their lives, on those with and without dementia influencing and being influenced, inspiring and being inspired.  As I wrote in 2014, “The approach is not one way or unilateral, but equal”. Japan’s latest national framework for dementia continues to recognise the value of, and contribution to society of, those living with the condition.

I have been writing and talking about dementia for a decade now.  The best dementia care is always, without exception, underpinned by the knowledge that those with dementia are no different in human terms than those living without it.  My mum was still my mum when she developed dementia, but sadly she now had a serious and incurable brain condition.

When I’ve seen best practice in action – whether it involves music, reminiscence, poetry, sport, dementia cafés, care homes, art or dance – everyone contributing understands or, importantly, comes to understand, this.

I have learnt so much from my dementia work.  The biggest lesson is perhaps the simplest (isn’t that often the way?).  That we are all humans.  That we all have strengths and weaknesses, flaws and talents; we all have lessons to learn and give, support to offer and receive, words and love to exchange, however we choose to do it.

In the dementia sections of Moving Kinship, Beatrice Allegranti has shared widely and eloquently her knowledge and understanding of, and innate connection with, those who are marginalised and stigmatised, and offered positive, creative, well researched, practised and implemented means to break down these barriers.

Moving Kinship – Practicing Feminist Justice in a More-than-Human World is published by Routledge and available through Amazon here

And you can read my original piece on Dancing with Dementia here: