It comes as a shock to many people when they discover that dementia care isn’t free as a service under the NHS but instead is mean tested under social services – so many older people and their families end up spending huge amounts for social care support without understanding why.
The reason for this? Because there is no cure for dementia – so its not classified as a health issue and doesn’t therefore qualify for free NHS services. It’s a care and support issue. But an extremely challenging one. It raises issues about what care and support is, what quality of life is for those who cant describe it for themselves, what person-centred care is … What a good and happy life is. When there is no cure available.
My mother died three weeks ago and I am still reeling with grief. Getting out of bed in the morning can be hard, as can doing my job, writing speeches. And one thing I notice people who care about me and want to support me struggle with, is how to talk to me. It is hugely challenging to listen to someone expressing pain, loss, anger and disbelief whilst resisting the urge to provide suggestions and solutions: what about bereavement counselling? etc
They are just trying to be kind and supportive. But in reality, there’s no cure for grief, I can’t bypass these feelings, I know I have to embrace and accept the pain and loss. I need to be able to be sad, to cry or moan or get grumpy without needing suggestions or ways out. Open listening. But open listening is hard because our normal conversational expectations are to offer guidance – not accept the other person’s reality and just be.
So communicating can be challenging when they don’t follow our usual tried and tested paths. As I thought about this presentation I was sitting in Starbucks when a friend came in and we stopped and had a natter together… “What have you been doing, how’s the development of the new website going, what’s the latest saga with your ex, what are you up to at the weekend…’ I asked her. The usual girl chat…. These are our norms. Asking questions and sharing information to engage with each other.
Yet when we come to working with and supporting people with dementia these types of conversation don’t work. A person with dementia may be trying to communicate but they can’t find the right words. They may have difficulty understanding what is being said to them. They may not be able to answer questions about things that happened more than 10 minutes ago – they may become confused, distressed or confabulate (make things up).
People with dementia – and every individual is different – may have difficulty also with performing tasks. The mind can be continuously wandering, they may no longer be able to bring attention back to a specific task, they can lose track of where they were heading. They can find environment’s over-stimulating, and experience sensory overload. They may also lose the ability to recognize objects or the people they know well.
So the challenge of working with people with dementia is to change the nature of our conversations and the way we interact and for us to learn to be with them in the here and now. This confounds our expectations of conversational arcs, communicating to share information, to find things out…. We have to ditch our need to find solutions and give answers. We need to change our expectations of purpose and process and activity and instead interact with their reality not impose our own.
There have been some (controversial) care homes in the UK and the Netherlands where the staff work within whatever era the person with dementia is inhabiting rather than trying to drag them back into the ‘reality’ of the present day. And one effect of this is often to challenge the older person’s carer – who desperately wants to maintain their loved one in the current day, acknowledging their history, personality and relationship. Not least because by doing so thus far they have assisted and extended the every day functioning of the one they love.
The medical and care models assumed by state services focus on prescriptions, wounds being dressed, help getting dressed, washed and fed. Yet we all know that our well-being is much wider than those minimal functions – we have the need to connect, to stretch and move, to express emotion, to feel the calm of absorption, to be creative, to feel joy, to laugh, be playful, to smell fresh strawberries or cut grass, to feel someone’s touch of friendship or love.
I believe that creative approaches help us challenge our conventional notions of engagement, and reach a broader notion of well-being. They help us create places and moments where memory, reminiscence and tangible things don’t matter.
Arts and dementia is a well established field which has a long track record – it’s been the vanguard of the arts and health movement. Music in particular has known benefits for working with people with dementia – when other paths of communication have been blocked music can still reach people and give voice to their personality, a window to their soul.
I was at a conference yesterday for the Methodist Homes and they were very positive about the benefits of individual art therapy – one on one with a musicians. One simple and very lovely approach I found in Finland involved care staff singing or humming whilst interacting with the residents, which helped to remove anger and tension and calmed their moments together.
The Baring Foundation funded some lovely group work by Sage Gateshead in care homes which reached out to people with dementia and was revelatory for the care staff working with them – they found new dimensions and understanding of the personalities of those they cared for.
Further afield I have been struck by what we can learn from applying unexpected applications in new settings. One thought provoking project I came across in Australia called Shaping a Montessori Community was developed by Alzheimer’s Australia Victoria and applied the creative principles of Montessori methods to people living with dementia in residential care and community settings. The approach surprises initially because of the sensitivity of using approaches with elders most commonly associated with childhood. But it became clear that the Montessori method need not be age bound – as it focuses on the individual having choice and a sense of control of their life. Older people, thought to be frozen out of the everyday world by dementia, could engage in the simple routines of serving lunch – setting the table, serving drinks and food with great care and concern for each other, creating their own rituals. It was moving and touching and challenged assumptions about the capacity of people living with dementia.
A really groundbreaking thinker, artist and educator is Ann Basting, who has created works in the US that allow older people to co-create rather than be entertained. The Penelope Project, based on Homer’s Odyssey, ran for a year in a residential care home – and allowed residents and staff to engage in every stage of the story through movement, discussions, knitting, visual arts, story-telling and acting. It made use of the whole environment, building on an assumption that residents of the home were familiar with constant parade of strangers (like Penelope’s 108 suitors) and with the notion of what is it to wait and wait and wait, as she did for her husband – a man on whose return, she didn’t recognise. In this project the process of co-creation was what mattered and the courageous staff of the care home openly admitted ‘we didn’t know what we were getting into’.
I am most fascinated by approaches that provide space for self-directed participation, that allow things to happen based on curiosity and imagination, those that focus on non-verbal interaction… They don’t allow us to pursue prescribed step-by-step processes. They are hard to predict because they don’t limit the possibilities of what will happen or start out with the pre-ordained outcomes funders are obsessed with. But they do allow new ways to feel and be in the moment – which have meaning for all of us.
One such project Animated Anthologies was created by Creature Tales in Tasmania. Two theatre makers ran a 7-day residency in a dementia secure wing, living around the clock with 23 residents. The artists transformed the communal area in the wing with a ‘shack’ installation which evolved with the input and engagement of residents. Every day the installation changed or was added to and was intentionally designed to draw in participation. New fabrics, decorations and props were added on a daily basis and residents readily engaged and started to join in with the activities – making props, telling stories and even triggering an impromptu golf lesson. The installation transformed the space – and became the focal point for meeting, conversation and activity and visibly affected the residents. Staff were surprised by the capability of residents, saw their personalities emerge and reported that they were more engaged and energised, settled and entertained. The project had the power to transform relationships both between staff and residents, between residents and with their families with new dynamics and understanding. As one of the staff reported ‘It took them out of themselves into a world and sweetness and joy’.
Similarly I think that what Spare Tyre has achieved with ‘The Garden’ is to create a space that can stimulate imagination and curiosity. It is designed to be responsive and bespoke to the individual – so that everyone can experience it on their own terms. Creating an environment that any one of us – with or without dementia would find sensory, calming and beautiful… Worldly and other-worldly.
So whilst I admire a huge range of creative work with older people and those with dementia I particularly relish those that are brave enough to put the quality into creating space and stimuli, without needing too much directed activity or process. Equally valuing the imagination of those that interact with them as the quality of the artist’s creative input. This work is brave and potentially hard to describe and measure. As a funder I know how hard it is to allow such inspirational approaches to be. In the here and now.
So some key questions or challenges:
- How do we persuade funders of the benefits of these more open-ended approaches that allow space for creativity and imagination?
- How do we persuade more organisations working with older people that creative approaches are a regular approach to promoting older people’s well-being alongside more traditional services like befriending and lunch clubs?
- Is there a framework/hierarchy for when we use different types of intervention –
- Individual therapies
- Groups structured activities
- More freeform imagination based work?
- And how do we make these work in a more sustained and less transitory way?
- And how do we explicitly address the need of carers alongside people with dementia?
Janet Morrison is Chair of the Baring Foundation
Views expressed in this post do not necessarily reflect those of the Baring Foundation.