Pippa Kelly is an award-winning blogger, writer and public speaker on elderly care and
Her debut novel Invisible Ink, which has a dementia thread, was published last year, and her articles have appeared in virtually every UK national newspaper. She also blogs for the Huffington Post and you can follow her on Twitter and Facebook
A dance project confronting the taboos of loss, hope and intimacy that surround dementia is to be performed in the UK and Norway later this year (2018).
The collaborative work, led by choreographer and dance movement psychotherapist Beatrice Allegranti, evolved from conversations with families affected by early onset dementia. Beatrice listened and observed, noticing moments and what she calls “vignettes”, when individuals made certain moments or uttered words such as “I’m grabbing the time I have left” or, from partners and adult children, “What is it to be human?” and “I hear your voice now”.
With her small troupe of professional dancers, Beatrice then co-choreographed bespoke pieces for each of the seven families which they performed for them, invited them to participate in and discussed with them, before blending parts of all seven into one work for public performance entitled “I’ve Lost You Only To Discover That I Have Gone Missing”.
The result is a moving piece that somehow evokes dementia – what it is to have it, to live it, to see it in someone you love – in all its tangled complexity and rawness, with occasional moments of quite sublime tenderness. No mean feat.
Set to a haunting original music score by composer Jill Halstead, the performance opens with one of the female dancers picking up a pile of clothes and hugging it to her, smelling it, cherishing it – a simple, domestic task, gracefully imbued in this particular context with hints of intimacy and loss. As the dance unfolds dancers put on t-shirts and shoes, sometimes correctly, sometimes not, becoming stuck, confused, frustrated – frequently falling back, literally, into each others’ arms. Dementia played out, in front of our eyes and brought to life, with added poignancy, through human forms at the height of their physical prowess.
Dancer Sabrina Gargano explained how the piece works. “We don’t have dementia but the people (the families affected by the condition) they were witnesses and they came with us. That’s why it is so emotional, evocative and different every time: because we carry them with us”.
Her Japanese colleague Takeshi Matsumoto, 36, whose own father has young onset dementia, summed it up beautifully: “We dance with them”.
The idea of those with dementia and their families being part of the performance is crucial to the project, which is funded by the Arts Council of England. “We wanted to create dance, not just for an audience, but with an audience, with participants,” said Beatrice. She explained how her roles as dance therapist and choreographer overlap to ensure she provides a safe place for anyone involved in the process – whether families, dancers or herself – to be touched and affected by issues such as loss, fragmentation and care. She’s succeeded.
Chrissie Fullbrook whose 67-year-old husband Charles has a rare form of dementia (Posterior Cortical Atrophy) said that there was a great togetherness about dancing which was very special because people with dementia often become so solitary. “With very few words people can grow together, move together, hold hands, touch, laugh and heal”.
Zaki Shah lives in Morden with his mum Forhat Rahman who was diagnosed with Frontal Temporal Dementia aged just 54. Having grown up in a home full of books, he explained that his mum’s semantic dementia had largely robbed them of verbal communication, but now dance and movement have provided an important “beautiful and cathartic” new way for him and his mum to connect.
Barbara Stephens, chief executive of Dementia Pathfinders, one of the project’s advisors, has 29 years’ experience of working in the dementia field. She said the bespoke participatory dances captured deeply felt emotions and the changing dynamics and tensions of relationships. “Words were not needed. The dances spoke for themselves”.
Thursday 22 February: performance & talk at Michaelis Theatre, Dance Department, University of Roehampton
Friday 23 February: participatory dance research workshop in collaboration with Created Out of Mind at the Wellcome Collection – for people living with young onset dementia and their families only. Specialist neuro-psychological techniques, using cameras, will capture micro human movement not immediately noticeable to the human eye. Apply for participation via email: firstname.lastname@example.org
Wednesday 23 & Thursday 24 May: Bergen International Festival, Norway. Premier of hour long version of ‘I’ve Lost You Only To Discover That I Have Gone Missing’ plus a participatory dance in a Bergen care home for people living with dementia
June 2018 – May 2019: monthly participatory dances for people living with young onset dementia and their families at Alexandra Palace and Merton Arts Space. Inquiries: email@example.com