Photo of Sir Andrew Motion by Johnny Ring
For a while now I’ve been working on a book that explores the relationship between health and reading (reading aloud in particular). Despite the numerous sloughs and impasses that attend the process of preparing an academic monograph, I’ve made steady progress, buoyed by some encouraging coups and breakthroughs, not least a recent interview I conducted with the former poet laureate Andrew Motion, whom I approached after learning about his interest in dementia and poetry.
A passionate advocate for, and democratiser of, poetry, Sir Andrew has long communicated the social and therapeutic value of verse, and I wanted to know more about what he thought poetry might possibly contribute to dementia care and our understanding of dementia. It was a brief – he is a busy man – but rich exchange, and our conversation bolstered my conviction that poetry (perhaps more so than any other mode of literary composition) is able “to cut through or across all sorts of impediments to full consciousness” (to quote Sir Andrew himself).
I started off by asking him how he first thought about poetry in the context of dementia care, and whether he could describe some of his experiences reading to people with dementia or his witnessing such reading?
Andrew Motion: When my mother was ill and in hospital through my late teens and twenties I noticed (although she didn’t have dementia) how much pleasure (though not a ‘literary’ person) she took in reading and hearing poems. Rhyme and strong rhythm seemed to make a very primitive appeal to her, and whenever she remembered poems from her childhood it seemed she was encountering treasure that she especially valued. This laid the foundation of my interest in thinking about how poetry helps ill people.
Then a few years ago I was approached to become the president of an organisation called Kissing It Better (there’s a website: http://www.kissingitbetter.co.uk/), which sends secondary school children into care homes to sing and recite poems to people with dementia. I gladly accepted the role and went on a few visits with the kids – and was always astonished by the effect of these little performances. Again, the primitive appeal of rhythm and rhyme was able to cut through or across all sorts of impediments to full consciousness, and to release and revive other poems that the patients had lurking in their memories. Really very seriously upset people would become (though generally briefly) lucid and happy.
It was extremely moving to see. I’m not a neuroscientist, but it seems as though the brains of our species are hard-wired to retain and enjoy the characteristic features of poetry (rhyme, rhyme, language that does not aspire to spell a single exact proposition). As I say, we might happen to grow up to enjoy speaking about poetry in a complex and sophisticated way – and to writing it similarly. But truly the appeal it makes to us is basic and fundamental. We are (which school schoolteachers and curriculum-setters tend to forget) a poetic species. Poetry is like breathing to us.
Kevin Harvey: Some critics (I’m thinking of literary scholars here) are perhaps a little leery of, or haven't really considered, using poetry in therapeutic contexts (seeing it as an instrumental use of literature, reducing texts to a form of self-help). In light of this, I wondered what your views were on using poems to achieve therapeutic ends?
AM: I can understand why critics are leery of the therapeutic role that poetry can play in life. Their problem is that a therapeutic role privileges things other than literary skill, density of writing, and necessary literary effects. In my own case, I make a clear distinction between the therapeutic role, and what I’d expect to see valued in a book of literary criticism and aimed-for in a workshop. And having made the distinction, I think that critics who confuse it, and who disparage the role of poetry in therapy, need to get a life.
KH: In an era where there is an emphasis on biomedical cures for dementia, do you think there is a greater scope for role for poetry in responding to it?
AM: Absolutely. If I were Secretary of State at the Department of Health I’d invest in Kissing It Better and other such organisations (there are a few others, aren’t there): a great deal could be achieved on a comparative small budget.
Postscript: Not long after our interview, I came across a recent poem of Andrew’s, ‘Better Life’,* which he’d written to help promote the Joseph Rowntree Foundation’s A better life campaign, a project which aims to raise awareness and improve the lives of older adults. The poem, which has been described as "a moving rebuke to a society which isolates and ignores its wisest citizens", is a fine example of ‘found’ poetry, a form of composition in which the author intricately weaves together other people’s voices into a composite whole or collage, in this instance the voices of older people whose life experiences would have otherwise remained disregarded.
In this respect, ‘Better Life’, besides the musical properties to which Andrew mentioned in his interview, demonstrates another feature of poetry, namely: its ability to validate, in memorable terms, personhood and individual experience. Or to put it another way (as the writer John Berger so beautifully does), poetry ensures that what has been witnessed ‘cannot disappear as if it had never been . . . The promise is that language has acknowledged, given shelter, to the experience which demanded, which cried out.’
*‘Better Life’ can be read and heard at: https://www.jrf.org.uk/betterlife
It was a real life, I think, those days
Of fairgrounds, brandy-snaps and hook-a-duck,
Singing on waltzers, we were children in love
With sugared lips and clasping foxglove bouquets.
They show me a photo, a wedding, I think that’s me
And you. Outside the church of our childhood
Where tulips and bluebells have begun to bud,
Lacy veil catching blurred confetti.
They tell me stories, some of them are lost
Among the years of children, dust and age,
Thoughts of you that cling onto the edge;
But still there’s foxgloves, fairgrounds, candyfloss.
I don’t know Them and You are indistinct
And yet this life of ours was real, I think.
In generating public understanding about dementia, the arts and social sciences have as much to offer as neuroscience. This is the starting-point of a group which has been invited to take up the 2016-2018 residency in The Hub at Wellcome Collection, a flagship space and resource for interdisciplinary projects exploring health and wellbeing. Bringing together a rich network including scientists, artists, clinicians, public health experts and broadcasters, the group will examine and challenge perceptions of dementia through both scientific and creative experimentation. They have been awarded £1 million to develop the project over two years. More than 60 individuals, charities and institutions in field of dementia and the arts will be involved in the hub, led by Sebastian Crutch (Project Director; UCL Dementia Research Centre). The goal of this hub – yet to be formally named - is ‘to shape, enrich and inform the public and professional perception and understanding of dementia through science and the creative arts’. Its ambition is to ‘change the way scientists and artists interact’. Of course that is a false dichotomy: we are all artists insofar as we have creativity programmed into us; and in a sense we are all scientists discovering and navigating the world around us by experimentation. Yet we are categorised from an early age, told what we can and cannot do well, encouraged in certain trajectories by well-meaning parents and teachers. As a grown-up academic researcher I fall into the ‘scientist’ category. Yet what I do is entirely creative: I generate knowledge out of data, design complex studies to answer difficult questions, nurture talent and compose prose which is intended to convey ideas in a meaningful way. I’d argue that the concentration which this work – science – demands and the satisfaction to be derived from it are just as profound as those experienced by a skilled artist. So where is the divide between an artist and scientist? Communication and the pursuit of understanding seem to be a common purpose. Leaving aside stereotypes (mad professor and free spirit) it seems to me to be something to do with how each relates to their respective community. Perhaps scientists observe shared norms, whereas artists – or so I assume – resist being governed? I will leave you to reflect on this conundrum – please share your thoughts with other readers of this blog.
Two things have recently made me think about the ways in which we as academics think about living with dementia; recent reading of wellbeing meanings in general and receiving a couple of battery hens.
On the face of it, neither of these things seem remotely related or relevant to dementia research. I agree and it has taken me a particular arduous scramble up Carl Wark to make the vague connection. Carl Wark is a Neolithic hill fort in Derbyshire which I managed to stagger up, across and down recently. Sometimes a walk on the wild side makes all the difference!
Anyway, let me try to make sense of these two things. For the past two weeks I have been struggling to understand the arrival and rapid decline of a couple of battery hens. These were acquired at a local animal sanctuary and seemed happy enough to travel in a delux cat basket to my home. On arrival things changed rapidly and despite following the advice to place each hen adjacent to the already established flock, each new hen became subdued and frankly ill. I was unsure why and so carted one off to the vets for a check up.
There is something very surreal about entering the puppy morning at the vets with a bald hen in a cat basket. I was greeted with varying amounts of amusement and conversation. The vet diagnosed a “roaring chest infection” and some £38= less and a sturdy bottle of anti-biotics we were on our way. Chest infections are not welcome in neither man nor beast; Hilda became a named pet (on account of the commitment to support her recovery) and so spent a week in the office in a large pen. Hens are naturally smelly but Hilda did seem to enjoy her spell indoors. Poorly hens stink. I was less enthused on account of the stench and constant coughing. So what happened to me during this period?
Well I started to realise that if a battery hen has never seen the usual circadian rhythms of daylight then they expect to stay awake for up to 18 hours a day. Similarly if they have only known flat surfaces then perching is a skill to be realised. Likewise food is no longer rationed to particular periods and so the gluttonous behaviour was simply expecting the grain to be removed at any minute. Hens which have not been held confidently are generally nervous and respond by passivity or outright aggression. Hilda showed fluctuations in all these behaviours. Ethel by contrast developed a certain feisty and admirable demonstration of united strength towards all. I lost sleep and worried about my personal abilities to manage these two old ladies. It should have been so simple.
Over time, I changed my approach to dealing with these sparsely feathered friends and began to adapt a somewhat hen led model. This included trying to teach them to perch on very low branches, providing food regularly but not continuously and helping them sleep at night time by making their bedtimes regular and dark. And it is starting to pay off with feathers emerging and generally sleeping hens at night. The gluttonous response is taking longer although mixed grit and grain is helping to avoid overblown bellies and foul wind. I had assumed that these battery hens would easily assimilate into an established flock by the usual methods adopted by hen keepers. I was wrong and had to learn from the hens themselves to understand their needs.
At this point I want to stress that I am not likening people living with dementia on a par with battery hens. It just so happened that at the same time as looking after these bald coots, I had been reading an academic philosophical text about wellbeing in humans and the meaning of wellbeing. This was not some fanciful idea to pass the time but important to my work which seeks to understand what wellbeing means to people living with dementia. I thought there might be some interesting ideas in the text. There wasn’t and I was looking long and hard trying to find something meaningful to me and my quest. More I’m saying that I can be likened to the naïve hen keeper who had no idea of the real needs of my new hens. Why? Because generally there isn’t much out there about how to care for bald chesty emotionally wrecked hens. It’s not the forefront of talk amongst hen keepers who like to discuss free range matters, pedigree breeds and keep it all sanitised. Both reading the texts and sorting out the hens have been a struggle for me. I can’t even claim these struggles have been positive yet but time may tell.
This brings me to gritty (pardon the pun) issue that many researchers face. Are our assumptions about living well with dementia based on our own lived expectations rather than those of people who experience dementia day-to-day? Well-meaning academics write about the ideas and meanings of wellbeing as if it only applies to humans who are in good (or at least average) physical, mental and emotional health. My recent reading of this esteemed handbook of wellbeing has not one single chapter on the human experience such as a change in health yet devotes several on animal wellbeing (ok not hens but primates and others). It’s all a bit bemusing and not helpful to me as a researcher or a hen keeper. We devote lots of funding and effort into understanding the human condition but not much into the human condition of falling apart, difference and generally growing older. Why is this? Is it our own myths which we perpetuate as “healthy” young beings? Is this obscurity about gradual decline and falling apart something I should be concerned about?
The thing is this. If we are to build dementia friendly organisations, communities and the like then we need to understand the meanings of wellbeing across the lifespan. If we deny the downright indignities and challenges of living with dementia then in a way we are denying the ways in which we can develop and sustain dementia friendly societies. After all, the very real challenge is how to maximise independence and support new patterns of living well with dementia. We can’t do this without understanding the diverse changing lives of those with dementia and their carers. We need to openly discuss these challenges at every stage of the disease progression so that services and needs are designed to respond to these everyday matters.
Is well being a possibility in dementia? Yes it is and this is the underlying thought. We need, as academics, to spread the word and be there to adapt and support the person living with dementia and their carers. Change can lead to impressive gains in wellbeing. This then can be the cornerstone to building dementia friendly communities which sustain wellbeing across the lifespan.
I think people ‘get’ Dementia-Friends or even Dementia-Champions and associated campaigns and events. Dementia-Friendly Communities (or cities) I think may require a bit more work to convey to many people. I’m currently musing how this latest campaign may develop and what benefits it could bring, distinct from other campaigns. In particular, I’m musing on this because our university is planning to become Dementia-Friendly. I hope that we may be able to model some ‘aspirations’ to help cities and towns that are also going down this route. I also hope that we can learn from communities which have already made a start.
The aspirations of Dementia-Friendly Communities can be ambitious, and the extent that these are achieved may depend on how well these messages are communicated to partner organisations as well as members within those organisations and communities. I'll focus on three aspirations; tackling stigma, workplace and prevention.
Negative perceptions and fears about dementia are common in England (and elsewhere), and can result in prejudice or exclusion of people with dementia and their family or carers. Through a purposeful approach of raising awareness and countering stigma and prejudice, I believe Dementia-Friendly Communities initiatives may lead to changing of social norms which could really improve how people experience everyday life in their community. For example, at our university this approach may help staff or students to talk openly about caring for someone with dementia.
For supervisors or colleagues of someone who may be developing dementia, there may be many tricky issues which need to be addressed with care and sensitivity. A dementia-friendly place of work could provide information and support - this may involve reasonable adjustments to enable a person with mild cognitive impairment or dementia to carry on working in a safe and supported way.
Finally prevention of dementia is rising up the agenda. Recent national guidance documents outline some ways for protecting against the onset of dementia, or possibly slowing progression. The core message of this guidance is around healthy diets and exercise. Can the Dementia-Friendly University help promote healthy lifestyles of students and staff and possibly help to prevent dementia in the long-run?
However what I will look for as markers of success of Dementia-Friendly Communities campaigns will be a balanced approach to all three of these aims (as well as others). I fear this will be a fine balancing act, as campaigns to promote prevention could unwittingly add to stigma. By this I mean that health promotion messages including a 'call to action' for behaviour change, can often overemphasise the 'problem' which could increase people's fear of dementia (consider anti-tobacco adverts for example). Basically - I hope campaigns continue to see the bigger picture of living well with dementia.
Photo credit: (C) University of Nottingham - https://www.flickr.com/photos/uonottingham/17550027061/in/album-72157652608555676/
