LILA: Thank you, Arti, for participating in this issue of Inter-Actions. At LILA, we consider that MIND is the most primordial organic process to develop and adjust itself as per individual or compound requirements, which makes it the strongest component of human existence – either as a power or weakness. It is your work in this context that interests us. Which aspects of mind prompted you to explore the communication process with the people suffering from dementia?
AP: I have always believed in a holistic approach to life. I value and believe deeply in the equilibrium of mind, body and soul; that to exist and live we are constantly trying to achieve a balance between the three. Although I accept that sometimes it feels like the mind rules, that rational thought takes over emotional thoughts, but then the struggle for harmony of mind, body and soul begins again.
A lot of my creativity has its foundation in this classical Indian dance saying “Where the hand goes, there goes the eye, where goes the eye, there follows the thought, and where there is thought there is emotion”.
I have been working creatively with older people for 20+ years. Whilst researching whether or not to specialise in the area of dementia about 10 years ago, I heard care staff say constantly, ‘we don’t know how to communicate with people with dementia’. As an artist I found this curious and as a human being I found it unacceptable. My question became ‘how hard can it be to communicate with another human being?’ and so began my quest to answer this question creatively. One of my first decisions was that I would not focus on reminiscence as it felt like we were locking people into a past life rather than accepting them as they are – in the here and now. Because one of the first things we have to accept is that our loved ones are undergoing a significant change.
LILA: Would you define mind differently from the perspective of art?
AP: They say there is a brain – a centre – in our stomach, which gives ‘that gut reaction’ response. Even the heart is said to be a centre of response. So from my perspective as an artist, I am interested in reaching the emotional centres of people I am co-creating with, or creating for. These centres are not necessarily just the ‘mind’. Emotional empathy, exploration and understanding, I think, is critical, and an artist seems to be able to reflect that to a greater or lesser extent.
LILA: Memories are like prisms for a specific pattern and also the wavelength of thought process. Is there an effective way Art can help in reuniting the lost pieces of memories of a gradually declining mind?
AP: Well this is an interesting question: memory is a very subjective and individual experience. No two people will remember an event or experience it exactly the same. What my art tries to do is to create a safe space for exploration of ideas and thoughts; of enabling the imagination to take its own path; and for those emerging thoughts, creativity and stories to be held, heard and honoured. After all who are we to question another’s living memory of life or an event; who are we to question the choice of colour of the painter; and who are we to question the uninhibited creativity, thoughts and stories of those living with dementias.
LILA: Is dementia clearly understood by people? How can being knowledgeable about ageing help understand and manage the difficulties of dementia?
AP: What is hard to accept is that the person with dementia is undergoing a significant change, that the relationship we had with them is about to change, that shared memory will either alter or diminish altogether. I often say in my masterclass sessions that from my perspective a new perosn is emerging, and we, as their loved ones, have to embrace and accept this new person despite our complex relationships with them and sometimes unresolved feelings. But the greatest thing we can do is not cause further distress to this person undergoing change by constantly saying ‘do you remember?’ because clearly they don’t. New memories are forming, new likes and dislikes, new desires, and even new eating habits. Effectively we are grieving someone that is still alive, and attachment to the past becomes painful for all. We can still be compassionate, we can still be playful and joyous, but we have to remain in their moment, and respond to that. It can be hard and difficult, but creating an environment that helps ease transition can be effective, enabling serenity and mindfulness for all. Don’t be tempted to fill their silence with chatter as often words are diminsihing, as is their meaning and verbal communication can become very difficult – did you know that 80% of our communication happens through body language and tone of voice/sound?
LILA: Your show Once Upon a Time used projection and a sensory approach to strengthen the communication between the actor and the audience. Please share the limitations and the advantages of this innovative process.
AP : After much testing and research for this first show in care homes and day care centres, my intention was to find a way to easily transform their space into something magical. It had to be welcoming for creative expression and awaken people who were locked inside themselves; it had to feel safe, and it had to have purpose and integrity in order for genuine creative exchange to take place. I was interested in reaching out to people on an emotional, physical, and psychological level. I began focussing on sensory engagement – touch, smell, taste, sight, audio – as the main way of communication, despite knowing that all their senses were failing. We sensitively layered the sensory experience. Let me give you an example: people walked into a room with projection, atmosperic sound and a scent. We gave them time to adjust to this new space, then went over to them, made eye contact, held their hand and said ‘hello my name is XYZ’ – and waited for them to awaken and smile at us, tell us their names or sometimes move their hand away. Sometimes we would mirror their movement or sound.
It was a process of giving, receiving, accepting, and responding. We took them on an imaginary train journey and then brought them back to a recognisable reality without distressing them and adding to their confused state of being. Everything we did, we did very slowly, taking time and care to make sure people with dementia adjusted to the experience slowly. The mind is slower, the body is slower, so reactions would naturally be slower. From our experience we know 50 -55 minutes of this intense stimulation is best for positive results. Over-stimulation produced a negative effect on their wellbeing.
This structure enabled profound moments of engagement from them in the form of telling stories, painting, dressing up and dancing. This very verbal show was not for everyone though. It worked well for those in the middle to advanced stages of dementia. Those at early stages (1 in 10) were irritated by it, sometimes felt patronised – and were free to leave the room. This show/experience also had a very positive effect on carers and loved ones. They were surprised by the responses of their loved ones – they engaged creatively, they laughed and had fun as themselves and not as ‘the carer’.
LILA: What is the significance of a non-verbal show (The Garden) for an audience with dementia? How do you measure their response?
AP: I had observed that people with dementia struggled with language and words. They couldn’t remember what a word meant, how to say it, some became isolated as they couldn’t articulate their thoughts with clarity, felt stupid. Some were reverting to their original language, i.e. Spanish, French, Gujarati etc. Verbal language, I thought, was a barrier to communication. So, the curious artist in me thought ‘what if we remove words? What would happen then?’
So we produced another very multi sensory interactive show, but this time without words. We learnt to mirror their body language, spoke with our eyes and facial expressions, and kept our body open and safe. Touch of the hand became essential. We developed a method of mirroring them with actions and sounds. We would do an action (e.g. sweeping leaves), watched to see who was interested in what we did, invited them to do it, always being careful to say ‘thank you’ to them afterwards. One of the most interesting things that happened was that the non-verbal people with dementia became very verbal. They told us stories and jokes, and laughed with us without distress or hesitation.
The Garden is an inclusive and accessible show that people with different kinds of disabilities can enjoy and take part in. Essentially we gave them control of their lives for a moment, enabling them to make decisions about how and when they wanted to engage with us within a safe creative space.
LILA: If a non-verbal show is capable of breaking the barrier of spoken words, is it safe to say that mind always has a stronger parallel language running through its several signs and symbols – barely explored by a conscious and healthy mind?
AP: The Garden (a non-verbal show) is very mindful and meditative. It touches us on a profound human and spirtual level – dare I say it touches our body and soul. Its journey begins by finding playfulness in everyday things, to opening up the imagination in a magical way, to quiet contemplation, if you wish. The overwhelming response from carers is that they are left feeling very relaxed and calm. The response from people with dementia by the end is either silence, tears, or they became very talkative but feel grateful for the experience. Perhaps because we accept them as they are and for what they can do, and never dwell on their past or what they cannot do. The show also affords people space for quiet thoughtful reflection. In its own way it does not shy away from the fact that most people with dementia are on their end of life journey and that we should be accepting of that – offering quiet and serenity.
LILA: Is it possible to take the sensory approach successfully to communicate with the patients of dementia if their visual approach of communication gets compromised?
AP: Absolutely! When we loose one sense, the others become heightened, and although I can’t explain it scientifically, what I have experienced is that despite many senses declining people with dementia have the ability to still ‘imagine’ the taste or smell, or if you use bright colours and simple images it still has an impact on them, which is why our projected images are very vivid.
LILA: How do the people with declining mental ability relate to the intricacies of spirituality? How do you help them develop a connection with their inner self?
AP: I believe the current generation of people aged 60+ have been brought up with deep beliefs and understanding of end of life journeys. They are aware of these pathways.
My observations of my own parents – who both had dementia – is that their spirituality was not in decline although their mind and body was. It was innate in them and it took over their mind and body. Connecting with your inner self is a personal process – but it is also about detachment. All I can do is create an environment that can give a space for that exploration, if the person wishes to explore it, or if they are in that moment when we visit them. The theatre/arts I produce has to be meaningful, purposeful and relevant for its intended audience. A moment of reflection, repetition, quiet is all possible in the context of what I do. The Arts for people with dementia does not always have to be about loud fun as proven with The Garden.
LILA: Please tell us about your upcoming projects and the scope of Spare Tyre’s work.
AP: Spare Tyre has produced bold and powerful theatre for 40 years. Our mission is to enable unheard voices and stories, and provide various platforms for those voices to be heard. We engage with women who have experienced violence, people with learning disabilities, people aged 60+, carers, emerging diverse artists, etc.
We are developing a new show for people living with dementia called Love Unspoken, using as our inspiration Tagore’s poetry, classical Indian dance, contemporary dance, and music. We are looking into touring this beyond the UK.
We have partnership projects where we are the specialist dementia arts organisation, and we have Associate Artists developing their own projects or representing us abroad.
LILA: Are the carers and the family or friends of the patients of dementia reaching out to you? What do you advise them?
AP: We run creative courses for family carers and paid carers. We suggest simple things that carers can do to help them like play music before bathing a loved one or ask questions that are not open ended of someone with dementia, don’t say ‘do you remember’ or correct them when they have the wrong day – just accept what they say.
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