National Conference On Dance And Dementia
Over the past five years I have continued to change and adapt my practice particularly with those living with dementia. I have sort to continually refine the offer and to make the individuals response the heart of the matter. It seems to me that the issue of quality art provision is extremely pertinent particularly at a time when dementia and how to "treat" it is ever more in the news. The art should not be seen as a mechanism to occupy/control people, to fill in the long periods of inactivity that pervade care homes. Instead the art should excite, revive, call forth and endorse people living with dementia.
What follows is my article from the conference in 2010 (which you can also download here), however I am left wondering how much has really changed in terms of access and entitlement to quality arts provision.
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In writing about this conference I feel I should also share a little of my interest and personal experience. I am a dancer/choreographer and work with many groups of all ages and abilities. My interest in working with people who have dementia stems from my experience of my Grandma.
My Gran was twice sectioned under the mental health act, the words I remember were that Grandma “had gone senile”. As a child her behaviour mostly amused me, particularly the times she came to live with us but I also remember the effect on my parents as she gradually declined. I clearly remember Grandma being taken away and subsequent visits to hospital and the locked wards. The reason I am sharing this is in a sense to assuage some of the guilt I now feel that we didn’t understand Grandma’s experience. We were in the end frightened of her and of her erratic unpredictability.
Now as a mature adult I feel I know what I should have done, how I should have involved her, respected her, and included her reality rather than constantly denying it. Hindsight as they say is a great thing and undoubtedly attitudes and understanding have radically changed. My grandma was therefore with me when I attended this conference which combined academic/scientific papers with personal story, with performance and with a lot of laughter and tears.
The conference was intense and there was a definite buzz around the issue of dementia, the possibilities, what could and should exist to improve current provision. What was apparent was that anxiety drives a lot of thinking behind the planning of services – we are all scared of “getting it” and rather than this being something which brings us together we often push it and those with dementia away. Fear and the search for a quick fix seem to drive approaches/services for those with Dementia. In the search for “a cure” do we forget the very people it is affecting right now and the reality of their daily lives and those who care for them?
With this in mind the conference opened with a simple and very beautiful dance accompanied by music and a spoken text. The dancer drew from the vocabulary of Indian Dance, using gesture skilfully to show her feelings about remembering and forgetting. The piece offered us two endings; one where the dancer responds to the words “ I have forgotten” with shame and physical withdrawal and one where she responds with laughter and openness. It was very effective and made the point effortlessly. As the dancer said at the end of her performance “why do we get so hung up on this remembering?”. It is only one way of interacting in the world. A person cannot be defined by what they remember or forget, we have to see the whole person.
This set the tone of the conference and for me this was crucially important in that it offered us all the possibility to relax, to laugh and to think differently. Re-imaging and re-thinking dementia was central to this conference. Attitudinal change is essential and that may in fact mean giving up on the idea of a “cure” as we understand it in favour of a number of creative and long term interventions with the person at the heart of it.
A representative from Liverpool PCT spoke about just this and some of the strategies they are implementing. One of the key factors for the PCT was open and frequent talk about dementia to get over the stigma and fear often associated with this condition. The importance of high quality “health inducing care homes and hospital wards” was highlighted. Early diagnosis was seen as essential and an adherence to the five aspects of well being which are Connect, Be Active, Take Notice, Keep Learning & Give.
The Liverpool model for dementia care seeks to have a needs led approach taking onboard that people develop brain related illnesses at all stages of life and that it is not something defined solely by increasing age. Services need to reflect this in their content.
The most important factor for future development in dementia care for Liverpool PCT was seen as Workforce Development. Liverpool has quality outcomes for dementia, the main focus being on “I am”. Recognising the individual, giving dignity to the person and to their wishes. The PCT is also seeing the benefits of movement, singing and reading out loud groups. The positive benefit of these activities has been to reduce anxiety levels and ultimately reduce the need to medicate. The use of creative activities was therefore positively advocated as effective and also financially attractive to the PCT – certainly not a cure-all but part of a bigger picture with dignity at the heart of provision.
The speaker ended by saying that they were open to suggestions and to the expertise of those who work creatively with dementia. The creative arts can reduce the need to give anti-psychotic drugs. The speaker felt that therefore dancers had a lot to offer as trainers of the future “give me something to buy from you, we know it works”. I am obviously hoping for such openness here in the North East and for more interactions/exchanges between the medical and creative professions which are person centred and have a focus on process and empathy.
The conference was jam packed with academic papers, workshops, discussions and performances. Some of the work that was represented was difficult to watch but this provided lots of discussion and opportunity for me to reflect on how I work and the assumptions I sometimes make. One area that interested me was the issue of playfulness and whether or not it can be seen as patronising to encourage mature people to be “child like”. This is an area that I have been working through ever since I graduated and began to work independently. I would welcome other people’s thoughts and feedback about this. The approach I take is to try and practice openness, to follow the interests of the group as they arise and this is what I mean by improvising - I may make a suggestion but I try not to impose.
The difficult work we were presented with at the conference was a piece of video footage where a practitioner instructed a group of people with dementia to be “pussy cats” and also instructed them on how they were to move. It was the manner of the instruction and the implication that caused a lot of discussion. Was this appropriate? What was the reasoning behind it? Was this patronising? Many of us felt quite angry about this particular piece of work and uncomfortable.
What was impressive was that the group staged a mini rebellion to the rather childlike activities and their creative response was one of the funniest life affirming things I have ever seen. It was the groups lived experience of dementia which I believe allowed them to be subversive in this way. Where I know I would perhaps be too polite or reserved to actually show exactly what I thought, this group were delighting in responding to the situation and sharing the hilarity they clearly felt. As one observer commented dementia does offer the possibility of saying and showing how you feel without concern for what others might think.
Another difficult area but very rich in term of the discussions it prompted was the question “How do we deal with the difficulties of dementia, the violence, the frustration, the sadness and loss?”. People shared honestly and openly and movement based work was cited as a positive way of dealing with difficult expressions of emotion. When words fail, movement and stillness can succeed. It counters strangeness and perceptions of otherness and allows us to connect with the feeling state of the person. One lady described movement as being “the anchor when the mind is at sea”.
We also discussed the importance of finding meaning in irrational behaviours which are distressing when we stand outside of them but are a means of expression for those that are on the inside of dementia. All of this was combined with the practicalities of the everyday activities of care and the time it can take, washing, dressing, eating etc. and the impact this has on the possibility for other creative opportunities.
The performances were a real highlight of the conference. Two community groups of older dancers performed. One of the groups was performing for the very first time and it was fabulous. The Liveability project performed Body Stories – Memories of our lives. The piece opened with a solo dancer who was smiling, relaxed and playing with the audience, gesturing and fully embodying her memories. Everyone was drawn in by her ease and the simplicity of the movements which spoke a universal language.
The piece developed to include five other dancers each of them moving in their own way each showing their personality and experience. As a professional dancer I have sat through some self indulgent alienating pieces but this was the absolute opposite, it made you want to get up and join in because they made it look so easy and enjoyable.
The dancers were interviewed at the end, of all them said that they danced for the joy of moving, for the social opportunities and also for the laughs and sense of community it gave them. They danced for themselves and for how it made them feel and helped them celebrate and appreciate they lives.
“Our memory is kept alert, our bodies are kept fitter and we are emotionally recharged”.