On the train home from Nottingham to Bristol last week I finished The Iceberg: A Memoir by the artist Marion Coutts. This extraordinary and devastating book describes the dying from a brain tumour of Coutts’ husband, art critic Tom Lubbock, a loss that is given heightened poignancy by the fact that the tumour also robbed writer Lubbock of words, the tools of his trade. It whittled down his vocabulary day by day, almost hour by hour, until eventually he was unable to connect objective meaning to linguistic constructs and all verbal communication was gone.
What happens to your sense of self when words and meaning disengage? How does the absence of language, or its disruption, change the way others interpret you? These are, of course, particularly live issues in dementia. They were also very much in my mind, as I had just organised a seminar on Words and Dementia at which Susanna Howard of Living Words and artist Kate Sweeney presented complementary perspectives on their work in using words with and for people living with dementia.
As a former English student, copywriter and editor, I am drawn to discussions around sense-making and making sense in relation to language. It was intriguing to hear Sweeney and Howard give quite different interpretations of the ethics of what might be described as an editorial role in the dementia context - whether as a faithful reflector of the words as said, or as an artist recognising the value of words as inspiration for further artistic interpretation. Sweeney highlighted the beneficial elements of the arts-dementia partnership for the artist, describing it as an opportunity to look for indexical linguistic forms in which words can become pointers towards interpretation rather than direct conveyors of meaning.
Howard’s work with Living Words serves as powerful testament to the potentially de-stigmatising effect of co-created artworks, drawing attention to the strengths and abilities of people living with dementia to communicate, to be creative and playful with language and to produce works with meaning. Kate Sweeney noted a definition of creativity from author-philosopher Rudolf Steiner: “Any action done consciously is creative” as an invitation to re-consider not just the nature of ‘creativity’, but also ‘consciousness’.
In my current role, as a PhD student looking into the methodological challenges involved in developing the evidence base for the arts and dementia, I was intrigued by the direction taken during the discussion after the presentations. Those attending were particularly eager to engage in questions around ethical issues and the barriers faced by practitioners in evaluating and reporting the outcomes of their work.
For me, the word ‘value’ provides a useful lens through which to focus thinking and even to understand why we do anything in life. Perhaps as part of an evaluative reflective practice, arts practitioners might want to consider the following three questions, either from a personal perspective as artist, or from that of an artist working specifically for the benefit of people living with dementia:
- What do you perceive as valuable about the activity or creative process you use?
- What is it within the particular activity or process you use that might enable this value to be realised? Looking deep and in detail – what are the ‘active ingredients’?
- How can you tell that this value is actually being realised?
Perspectives on value aside, Sweeney also laid down an exciting challenge for us evaluators and researchers – suggesting that perhaps we need to ‘be there’ as witnesses – rather than to rely on words, video or photography to document and describe what actually happens during an arts and dementia project.
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.
I was recently lucky enough to visit one of those countries which for most people living above 30 degrees latitude and experiencing grim winter morning fogs and dreadful rush hour traffic would be called "heaven on earth". Indeed it is!
In that enchanted faraway land, people do not lose sleep at night over imminent deadlines nor they have nightmares about their upcoming PhD viva in June! Worst case scenario, their sleeps can be troubled by the local wild frogs courting their lovers incessantly at night, a sound which I am embarrassed to say, is confused by most westerners' ears with shrieking rusted unclosed gates moved by the nightly breeze.
This calendar-event-free dream place took me days before I could even try and disconnect my mind so, in the first long lazy beachy afternoons, rocked by the sound of crushing waves, I engaged in wishful thinking. Aware that many British expats have let go of the motherland and jumped the pond to call this place home, I began to feel "peer-pressured" and to question the very reasons why we people from the so-called developed countries (yes, we can be arrogant even with words) hold on so tight to the greyness and stress of our routines when there is obviously a much colourful, wild and romantic world out there.
What is it that made me choose the UK among all other countries in the whole wide world as my home? Is it career opportunities, cultural events, international cuisine? Yes, that helps for sure. But it must be something else. It is not patriotism of course....how could it be; I have only lived in the country for four years! ...and after all I am Italian...since we are going by total stereotypes here, we are strong at pizza and opera and love, but certainly not at screaming at the top of our voices our love for the Union Jack!
Well, On that very fateful day on Reduit beach, St. Lucia, facilitated by a couple of glasses of rum punch, it dawned on me. Italy may as well be the embodiment of heaven on earth in certain aspects and St. Lucia has pink sand and Caribbean blue skies amidst a green so intense that it almost hurts. But the UK has a few strings to its bow.
For example in Italy, after almost 30 years since the first debate in the lower branch of the parliament, we are still struggling to pass a law on civil partnership. In case you are wondering, no, that is not even marriage!... And it does not contemplate adoption either. In Italy I and my partner of 17 years are considered good friends (albeit with good benefits!) before the law. In the UK instead, we are called a married couple, they see us together at GPs and we can even queue as a family at the dreadful Stanstead Airport passport checks (Note to the Italian government: another valid reason to legalise gay marriage is to make those endless queues at the airports quicker to process!).
I was driving past a picturesque village during my Caribbean holiday when I experienced my number two eye-opener. A disabled man on a wheelchair was pushing himself up a very steep hill relying on his own muscular strength under a 30 degree sun. I could not help but think that the scenario would be quite different in the UK (sun situation included). I bet that disabled man would be happy to call the UK his paradise island, a place where social welfare allows for Personal Assistants to provide support, where there is an efficient public transport and (surprise!) it is mostly accessible and where I am sure at least a decent amount of people would pull off the road to offer a little help in the same situation.
The last episode occurred just a couple of days before I left. The topic of my job came up in a conversation with a local. I said I was a researcher in dementia and after a moment of silence the guy told me: "You would not have much work here. We do not have those kinds of problems". I thought to myself that I was confident enough I had seen many of those "non-existing" problematic situations and considering that the alcohol consumption in the country for a typical adult is probably equal to that of a 15 year old in the UK eating at Nando's with the family, I am pretty positive what I witnessed was not alcohol-related dementia! Once again, on that occasion I felt really proud to be living in a country where dementia is openly discussed and its extent fully acknowledged and where the money that we taxpayers contribute is used to advance research and practice for the good of the most vulnerable. I am grateful to be living in a country where the prime minister has made dementia his priority and where studentships are granted to student like myself who want to make a difference.
I guess my take home message is, should there need to be any in a blog, that 1. we should treasure what we have in this country and never take it for granted. It is easy to criticise and indeed being critical is an essential part of improving our system. At times, however, it is fulfilling to just realise that we live in a great civilised country. And 2. You should definitely take that Caribbean holiday!
We have just completed our latest round of volunteer recruitment and are very pleased to welcome 8 new team members to Growing Support.
The new volunteers will work across 16 care homes to support people with dementia to participate in social and therapeutic gardening activities held in their own garden. They contribute half a day each week to provide practical support and encouragement to residents who may struggle to complete tasks by themselves or lack the confidence to join in.
Many care homes, particularly those specialising in dementia care, only have sporadic support from volunteers. The reasons for this are varied: some have been put off by poor experiences in the past; care homes can appear ‘closed-off’ from the community making it hard for willing volunteers to know how to get involved; often care staff are simply too busy to be able to provide the support required to enable volunteers to make a meaningful contribution.
We have found that acting as the bridge between local volunteers and care providers is an effective means of increasing the involvement of the community in care.
So far we have trained 50 community volunteers to engage people with dementia in therapeutic gardening activities. I’m always amazed by the impressive range of volunteers who donate their time and skills. We have a large number of young people, at the start of their careers, who bring an energy and enthusiasm to the gardening sessions to which residents respond very positively. At the other end of the spectrum our team of experienced health and social care professionals often know more about how best to support people living with dementia than we do!
Studies show that involving the community improves the quality of care and we can certainly see this in practice. Individual support from volunteers means that every resident is able to participant regardless of any health issue or cognitive impairment they have. The volunteers are also able to spend more time with residents, connecting on a more human level and developing richer, personal relationships.
Volunteers often feel rather daunted about working with people with dementia for the first time and it may take a week or two to build up their confidence. Quite quickly though, we then find volunteers describing a deep sense of satisfaction and enjoyment from belonging to the group. Many report that they too find the gardening sessions therapeutic, providing a welcome break from the pressures of every day life.
So, I hope our new volunteers aren’t too nervous as they join gardening groups for the first time this week and I’m looking forward to hearing all their stories when we next catch up.
A binturong is twice as long:
You might have thought
It’s very short -
In spite of that
It’s round and fat
A binturong is twice as long.
A binturong will get it wrong:
It goes to school
And plays the fool
And makes an ass
In every class
A binturong will get it wrong.
A binturong emits a pong:
Does not wash well
No shower gel
And give up hope
Of using soap
A binturong emits a pong.
A binturong will sing a song:
High in its tree
Beautiful harmony
You may not hear
Lest you come near
A binturong will sing a song.
On a damp, dark evening in November around 80 people came together at County Hall to think about how to meet the challenge of dementia. People came from all parts of Nottinghamshire, from many different organisations and backgrounds, each with a personal or professional interest (or both) in dementia.
The presentations are available from Nottinghamshire County Council’s website (http://www.nottinghamshire.gov.uk/care/health-and-wellbeing/health-and-wellbeing-board/stakeholder-network-events). Speakers included Professor Tom Dening, University of Nottingham, on how research helps people with dementia.
The theme of government policy is 'living well with dementia’ and this is the challenge. Nottinghamshire has achieved most of the 17 objectives in the National Dementia Strategy published in 2009, and has a comprehensive range of services. However, approaches to dementia care move on and ideas change. We now have the Prime Minister's Challenge 2020 and a new set of recommendations to address. The meeting in November focused on 5 of these: reducing risk, Dementia Friendly Communities, care after diagnosis, the role of Primary Care and carers.
So, first, how do we reduce our risk of getting something we understand so little about? It’s well known that there is a link between smoking and lung cancer, alcohol and liver disease but the public health messages about the risk factors for dementia aren’t as well known. What is public health doing about that? One thing is the NHS Health Check which is your chance to get a free midlife MOT. For adults in England aged 40-74 the Health Check aims to help people live longer healthier lives, and everyone who has an NHS Health check is made aware that the risk factors for cardiovascular disease are the same as those for dementia. People who are aged between 65 and 74 and have a health check also get a leaflet with information about dementia.
So, how do we bring about those simple changes in lifestyle that are so important? The evidence is that people know what behaviours help promote a healthy lifestyle: stopping smoking, becoming more active, drinking less alcohol and improving diet. It sounds simple enough and these behaviours can also reduce our risk of getting dementia, especially vascular dementia.
Here’s a link** to Physical activity benefits for adults and older adults which helpfully advises us to be more active, sit less and something is better than nothing! So I have made a New Year’s Resolution to be more active, sit less and eat more healthily. Specifically I have joined an exercise class, taken up swimming again and got out my pedometer to increase my daily steps. What will you do this year?
* http://www.nhs.uk/Conditions/nhs-health-check/Pages/NHS-Health-Check.aspx
NHS England’s National Clinical Director for Dementia looks at the challenges of diagnosis going into 2016:
Only a few years ago it would have been a real challenge to get a room full of people interested in dementia, to garner excitement and a real sense of possibility for what could be done.
One of the things that stands out for me, as NHS England’s National Clinical Director for Dementia, is the fact that dementia is now something which is seen as a challenge and opportunity for a wide group of people. It is no longer solely the purview of a particular group of clinicians, researchers or specific disease lobbyists.
So, why is that?
To use that well-worn phrase: “It’s everybody’s business”.
If there was one thing for me that has really transformed the issue of dementia care it is that awareness is at its highest.
There is no doubt that general political interest in the disorder has been incredibly helpful. To have one Prime Minister’s Challenge on dementia is fantastic, to have two is extraordinary. Of course they are like the National Dementia Strategy in that they are a reflection of what a wide constituency of people feel is important about dementia and, as such, they mirror the current zeitgeist.
For example, in the first PM’s dementia challenge there was specific mention of the diagnosis rate, research and dementia friends. The second developed this to include post diagnostic support, extending research - £150million for a new Dementia Research Institute was announced in November 2015 - and training, along with the important tangible aspiration of having a disease modifying treatment, by 2025.
NHS England set a target that two thirds of people with dementia should have a diagnosis and post diagnostic support, and we can now say we have now fulfilled the first part of that. We must maintain that performance and ensure high quality post diagnostic support is available.
The issues going forward now are around looking across the pathway of dementia diagnosis and care. Based on the title of the National Dementia Strategy, these are:
- Preventing well
- Diagnosing well
- Supporting well
- Living well
- Dying well
The challenge will be to develop a narrative around these five components and key elements of success for each.
There is significant interest in terms of prospects for new treatments for Alzheimer’s disease. By next year, the first treatment which slows down the progress of Alzheimer’s disease could be licensed (please see link at the bottom of the page for more information). Any developments will need to be associated with a change in people’s view of Alzheimer’s disease in terms of investigations and the administration of the medication.
There are many challenges ahead with dementia including making sure that people get the support they need and deserve following diagnosis. Better partnerships have helped place dementia high on the agenda. Looking to 2016 the future for dementia care is met with great optimism.
Any observations, comments and suggestions gratefully received at [email protected] or @ABurns1907 on Twitter.
Link to report on treatment for Alzheimer's disease: https://www.england.nhs.uk/2015/09/15/alistair-burns-martin-rossor/
I am on a suburban London train and eavesdropping on a conversation behind me in an almost-empty carriage. The two ladies are in their sixties, I'd guess, discussing their families. I give up trying to read and settle in to listen to them, marvelling at how articulate they are, admiring the fully-formed paragraphs that they deliver, without hesitation or repetition. I surmise that they are old friends who see each other only occasionally so are bringing each other up to date with the personal relationships that define their lives. Christmas plans - who goes where and why - then a bit about the employment situation of the younger generation, but nothing crass like salaries or occupations, simply whether they are happy at what they do. They move on to the sons and daughters 'inlaw', and even how they get on with the inlaws' parents, all in a generous and positive spirit, uncritical and complimentary.
Then the conversation turns to dementia as so often happens. These educated, perceptive and kind women each describe a parent: the gradual memory decline, the steps they took to help, the things they wished they'd done or done sooner, amusing anecdotes arising from forgetfulness, and the Problem with Paid Carers. The central conviction on which they concur is that 'you can't live their lives for them'. A sigh of regret. Then they recall several mutual acquaintances ... (aha they must be former neighbours, because they have both known the same people at one time). Well, so and so no longer answers the phone, and there is concern about her across the neighbourhood. The speaker clearly implies that dementia is taking its toll on a woman who lives alone. 'You can't live their lives for them' hangs over the exchange. The women tacitly absolve one another of responsibility for the neighbour's welfare.
It's clear that unless her house were burning down they would not feel obliged to act. We're English you see, we don't interfere in other people's lives.
On 1st February 2010 the writer Terry Pratchett, author of what he self-mockingly referred to as ‘inexplicably popular fantasy novels’, gave the 34th Richard Dimbleby Lecture. Somewhat grimly yet playfully titled Shaking Hands with Death, Pratchett’s talk offered a touching and witty insight into living, as a writer, with Alzheimer’s (Pratchett had a rare strain of the disease known as Posterior Cortical Atrophy, which first manifested itself in difficulties accurately touch-typing), and set out a considered case for the right to choose, what he called, 'a good death'. I didn’t catch the original broadcast back in 2010, but read the script of the lecture much later, when it was first published in 2015. It made for wonderful reading.
But it was neither Pratchett’s account of his adjusting to life with PCA, nor his acute philosophical musings on assisted dying (memorable as these both were) that were, for me, the most interesting aspects of his talk. What caught my attention above all else, and has stayed with me since, was, very simply, the reason he gave for agreeing to deliver the lecture in the first place.
Prior to becoming a best-selling novelist, Pratchett was a newspaper reporter and, like many other reporters at that time, was an admirer of the pre-eminent journalist Richard Dimbleby. When Dimbleby died of cancer in 1965, Pratchett was struck by the candidness with which the journalist’s cause of death was announced in the British press. In those days ‘cancer’ was a forbidden word around which obituary writers fearfully tiptoed, preferring instead the vague and euphemistic expression ‘long illness’. The effect which this bold departure from linguistic convention had on public discourse, Pratchett recounted, was astonishing, and thereafter, spurred by this new verbal candour, the war on cancer began in earnest. ‘Before you can kill the monster,’ Pratchett opined, ‘you have to say its name.’
Respecting dementia, I fear that we are, linguistically at least, still stuck in a kind of benighted pre-Dimbleby era. Peruse any recent newspaper obituary, for example, and I suspect you’ll be hard pressed to find any explicit mention of dementia, regardless of the significance of its impact on the life of the deceased. Shortly after the death of Margaret Thatcher in 2013, I read as many obituaries as I could lay my hands on and, as far as I recall, not one of them discussed her having dementia. It was as though any mention of the disease would have been in some way incommensurate with a relevant and proper appraisal (positive or otherwise) of her life and legacy.
Another linguistic parallel between cancer and dementia is the way the two are described metaphorically. But here, as we shall see, dementia is by no means figuratively lagging behind in the 1960s. Metaphor (which literally means a carrying over, a transfer) relates to the process of describing one thing in terms of another: Juliet is the sun; he drowned in a sea of grief; all the world’s a stage; the rain came bulleting down, and so on.
In a marvellous and highly influential book, Metaphors We Live By, George Lakoff and Mark Johnson argue that metaphor is not simply some form of linguistic garnish – a poetic flourish designed to embellish an otherwise unremarkable stretch of discourse. Rather, they claim that metaphor is a means of seeing and making sense of the world, and hence something much more fundamental to human perception and experience than we have previously allowed for. We use metaphors all the time, often without realising that we are doing so. One of the most common kinds of trope depicts life as a journey, a metaphor which is realized in a variety of common expressions: We’ll cross that bridge when we come to it; there are a number of paths open to you; the baby has arrived! In fact, metaphor is so common in everyday language (not just literary discourse) that almost everything we say is in some underlying sense figurative.
Metaphor certainly pervades the language of disease and medicine, particularly figures of speech that relate to war and warfare, although, here again, we might not readily apprehend their metaphorical essence. For example, terms such as heart attack and casualty (as in casualty department), and talk of wiping out disease and treating it aggressively, are so common as to have become almost unnoticeably conventional. Yet construing disease in martial terms, however conventionally, has its benefits. It allies patients and health practitioners against a common ‘enemy’ and can confer a sense of agency in a time of doubt and helplessness (feelings which are understandably common in serious illness).
Military metaphors also feature prominently in the promotional rhetoric of health charities and public health campaigns. One can see why. Such tropes are characteristically vivid and attention-grabbing and hence able to help raise the profile of a particular disease. Any mention of fighting disease, moreover, encodes the prospect of victory. In the case of cancer, with treatments (‘arms’?) becoming increasingly effective, and more and more people surviving (or indeed ‘beating’) the disease, the martial metaphor is, for some people, appropriate and effective: it can inspire genuine hope of personal recovery, the discovery of a cure, and stimulate charitable action.
But any talk of waging war on disease also intimates, of course, the possibility of defeat – of being ‘beaten’ by disease. And this is why conceiving dementia in military terms is, I think, inherently problematic. There is presently no cure for dementia (whatever the variant of this complex, multiform disease) and thus to 'fight' it is a potentially inaccurate and misleading form of representation, and one that has certain (negative) consequences. For how exactly does one fight a disease for which, unlike other serious diseases such as cancer, there is no effective and readily available treatment? Should people with dementia be encouraged to fight? Are they always well-placed to do so? And what is it to speak of people who have, as it were, ‘lost’ to the disease – does this entail construing them as somehow or in some way having failed?
I think that talk around health and illness has suffered for too long from ‘combat metaphor fatigue’. So here’s a rallying cry (a sporting rather than military one, I hasten to add): it is time for new metaphors – time for less aggressive and absolute ways of describing dementia and the experience of living with it. We need tropes that, in the words of the great Tom Kitwood, promote ‘personhood’ and living well with, rather than struggling against, the disease. Changing the way we talk about dementia is not simply a token exercise in social etiquette, a means of being polite and respectful (important though this is). It is more fundamental than that. Updating our tropes affords us new, more enlightened, ways of thinking about and making sense of dementia – possibly shedding, in the process, some of the stigma which attends prevailing formulations of the disease.
Suggestions for further reading
George Lakoff and Mark Johnson (1980) Metaphors We Live By.
Paul Hodgkin (1985) Medicine is war: and other medical metaphors.
Peter Ashley died on 10th November 2015. This brings to an end a remarkable life and he is much missed by the people who knew him. He made a great contribution to how dementia is perceived, spoken about and responded to.
Peter had a background in engineering and maths and worked in the electronics and computing industry. He was a successful businessman and by the age of 64 had become a director of a computer graphics company. At this point, in 2000, his life was turned upside down by a diagnosis of dementia with Lewy bodies.
After a few months, he resolved to make the best of things and embarked on a second career as a dementia activist. He was elected as a trustee of the Alzheimer’s Society which may well have been the first time that a national dementia organisation had a person with dementia on its governing body. During this time, around 2004, he established within the Society a group called Living Well with Dementia. This is probably the first time that now well-known phrase was used.
His contributions included input into the NICE/SCIE Dementia guidelines, the drafting of the Mental Capacity Act, and the development of the National Dementia Strategy (published in 2009 under the title Living Well with Dementia). He was instrumental in the founding of the Lewy Body Society. He was also a frequent attender at conferences and events in the UK and further afield and had a huge circle of acquaintances. His wife, Ann, was instrumental in helping him to achieve these things and herself deserves great credit
I met Peter several times over the years. Our closest interaction was that he contributed a chapter on Living with Dementia for an edition of the Oxford Textbook of Old Age Psychiatry. In fact, no chapter had been forthcoming, so I was tasked with the delicate mission of investigating the matter. We had a phone conversation in which we explored various means of helping him to get started on the writing (from which, I presume he had some problems with executive functioning). The agreed solution was that I should send him a set of questions on issues we wanted him to cover and he would write around this as if he was doing an interview. It worked beautifully.
The phrase, Living Well with Dementia, is now in the groundwater. It may not tell the whole story, as of course some parts of the dementia journey may be harrowing, but it is an effective counterweight to all the ‘dementia sufferers’ bilge you read in the newspapers. Peter eventually died of cancer, so he and dementia were probably equal partners after 15 years post diagnosis together.
[see http://www.dementiaallianceinternational.org/peter-ashley-life/ for more information]
