Let’s all sit down, take a collective deep breath and look carefully at these recent figures from the Alzheimer’s Society. 800,000 people in the UK are currently living with dementia. 670,000 people in the UK are caring for those with dementia. And what about this figure – by 2021 over a million people in the UK will be diagnosed with dementia.
Just imagine the implications of this on a personal and collective level. Dementia is a progressive, remorseless decline in cognition, function and behaviour. The collateral impact is also vast. Carer burden in terms of physical work, psychological distress and financial obligations is huge.
The cost to the state is vast too.
We don’t need to imagine the
financial implications because another statistic tells us that the estimated healthcare cost to the UK in 2021
tops £23 billion!
My work, though I should add that it is also my passion, straddles two worlds: neurophysiotherapy and community dance. For many years I have argued the case for the effectiveness of dance and movement in the treatment of neurodegenerative disorders. In comparison to pharmaceutical or surgical treatments it’s cheap, it’s non-invasive, has only positive side effects and tackles many of the problems of social isolation as well as the clinical symptoms. It’s a message which has been slowly gaining ground.
There have been huge strides in the field of dance for Parkinson’s, especially since the founding of Dance for Parkinson’s Network UK. But dance for dementia has lagged behind despite beacons of light from people like Dr Richard Coaten working with the South West Yorkshire National Health Service (NHS) Trust.
In a recent article in the Guardian (Thursday 11 April 2013) Halima Khan, Director of People Powered Health said, “the NHS is… still finding its way towards a model that effectively manages long term conditions.” She argues for a person-centred approach that includes exercise and that, by her estimate, could save the NHS up to £4.4 billion a year. She also highlights the challenge of nurturing compassion in large, formal institutions where staff are under considerable financial pressure.
There are many misunderstandings about what dance is, and what its potential may be to make a positive, measurable difference to the lives of those living daily with lifelong conditions that will almost certainly get worse. So, I was delighted recently to be invited by Active Cumbria to help develop Dancing Recall: Making Connections – a dance for dementia pilot project, which aims to bring a clinical perspective to the practice of community dance.
The programme is delivered as a series of training days for dance practitioners followed up by mentoring sessions observing and supporting them in action as they team-teach. The model is founded on the values of community dance where relationship, creativity and community building are key, but brings in a logical structure based on clinical understanding. We aim to address the physical, cognitive, social and emotional effects of dementia in its various forms, simultaneously in one place and at one time through community dance.
The focus of the training is about developing what could be called ‘the clinical eye’. That is: the ability to recognise the clinical condition through posture, gesture and every other aspect of physical movement. To know what is happening beneath the surface of the body and beyond the muscularity. We look at the ways we sit, look up, or out, glance, wave, stand, reach out, grasp another’s hand and drop it again. We take into account what is involved when we turn, clap high, stamp a foot and hold our balance.
All of these seemingly simple movements are in fact highly complex. The interactions of the network of nerves and muscles is highly nuanced and when all works smoothly in a well-orchestrated nervous system we can take this facility for granted. But, when the signals become muddled and muted as they do in the various forms of dementia the effects on mind and body are profound and widespread. Our inbuilt ability to process information and respond verbally and through movement can be incrementally compromised. It is hard to think of an area of life which is left untouched by dementia as it progresses.
However, research has shown over and over again, that dance, the lyrical, non-didactic flow of movement, can still engage the latent muscle memory that survives the onset of the disorder. According to leading neurologist Doctor Oliver Sacks part of the mind does remain responsive. In his book he states: “Some form of memory and response always survives, above all the sort of motor memory and response which goes with dancing”. (1)
This has most positive implications for community dance artists and musicians. The surviving ability to respond to music and dance offers us a clear way to directly engage with our participants.
And using a structured, well considered approach with a reason for everything we do means we have a vocabulary and a rationale to engage with health professionals at every level. It by no means detracts from the level of enjoyment, creative expression and full-hearted response we see at each and every session.
So, here in the workshop dancing, singing, music and laughter are filling the room and animating faces every week as the first phase of Dancing Recall takes place. The participants arrive as ‘people with dementia’ but soon become simply people again as the dance begins.
Peter has no knowledge of the model we are using, the clinical effect we are seeking or even the circumstances which have brought him to this dance studio in Kendal. He just lights up when he hears the music and is moved, from whatever ‘within’ means, to respond in his own way to its invitation.
Flora can’t remember that she used to win competitions for her beautiful embroidery, or how she met Mike, her husband of many years who accompanies her each week to dance. But she is full of grace and gentle gesture and her smile warms the assembled group. Flora has a natural flow and harmony of movement which makes her so expressive. Neurologists sometimes use the term ‘kinetic melody’ to describe the fluidity of human movement. Flora oozes her own special kind of kinetic melody. Mike wishes Flora was her old self, but can see her blossoming before his eyes as she tilts her head and smiles, or lifts a graceful hand, or waltzes across the floor with him.
People with various different manifestations and stages of dementia have attended our groups. Some have the stiffening, fixing and flexing of the body which makes movement so impoverished and unreliable. But, even they soften in the dance.
So here I am with both my hats on. The neurophysiotherapist and the dancer. What works in practice? What doesn’t? What do we need to do more of and what do we need to stop doing? I believe we should do what the latest National Institute for Clinical Excellence (NICE) guidelines suggest. We should converge social and medical streams of healthcare, listen to what real people have to say about what types of healthcare they find most useful, and offer community dance for neurodegenerative conditions as one option.
The government’s National Dementia Strategy 2007 identifies key needs for the population which support my own view. It is wonderful to see funding finally being diverted to support initiatives that improve the quality of life for the many thousands of people living with dementia.
We are only part way through the Dancing Recall project. The next groups of participants are in Keswick, Carlisle, Whitehaven and Penrith. By the time the pilot ends we’ll have danced our way around all six regions of Cumbria and created a network of trained dance and dementia practitioners.
So what about the future? Many people have been and will be involved in the running of this project. This network continues to evolve and will serve us well as we move ahead into the evaluation phase.
Our evaluation processes are inevitably complex looking at both the training and the delivery. We have a considerable body of information to look at and use to help shape the future of this work.
I have had a vision for many
years that community dance for people living with neurodegenerative conditions would be made available within the NHS. Dancing Recall, coming at a time when there is national recognition of the scale of the problem, brings us closer to that vision. And
the only way that vision will become reality is if it is shared; if together we act positively, decisively and collectively.
contact daphnecushnie@talktalk.net
(1) Musicophilia: Tales of Music and the Brain, Oliver Sacks, 2007 Knops