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I was invited to give a talk about dementia recently, but was asked to avoid the word dementia. It seems people are so afraid of the condition and the stigma is such that they don’t want to hear the word uttered. It’s true that dementia is the condition that people are most afraid of, and this is perpetuated by negative coverage in the media and beyond. Cinematic portrayals often foreground the ‘tragedy’ of the condition (Alzheimer’s Europe, 2013). As Zeilig (2014) suggests, dementia is often equated witha complex, unknowable world of doom, ageing, and a fate worse than death’. As someone said to me recently ‘If I get it [dementia] just buy me a one-way ticket to Dignitas’. Metaphors related to warfare are commonly used e.g. the ex Prime Minister David Cameron and now President of Alzheimer’s Research UK stated: We‘ve got to treat this like the national crisis it is. We need an all-out fightback against this disease, one that cuts across society. (PM Office, 2012). With old age the biggest risk to developing dementia, and an ever-growing ageing population, it’s unsurprising the public are scared.

Yet there is widespread confusion about dementia, e.g. dementia and Alzheimer’s Disease are commonly used interchangeably. Dementia describes a set of symptoms which impact on cognitive ability and behaviour, often leading to loss of independence. Most dementias (about 60-65%) are due to Alzheimer’s Disease, other rarer forms include vascular dementia, and dementia with Lewy bodies. Common symptoms include language difficulties, confusion, loss of memory and sometimes, behavioural disturbance such as wandering or disinhibition. Dementia is usually progressive (i.e. early, mid and late stage) however people will experience symptoms differently, at different times. The numbers of people living with dementia are high, as is the cost of providing care, currently 850 000 in the UK, costing £26 billion a year. The numbers of those diagnosed are predicted to rise higher, to over 1.1 million in 2025, and there’s no imminent cure on the horizon, despite what newspapers report.  

Everyday, stories are published about possible risks for developing dementia, and on breakthroughs and even cures for the condition, that are likely many years from implementation, or that come to nothing. This reinforces public confusion and fear, and can create false reassurance and distress for families involved, as reported previously. Examples include recent reports on the benefits of Marmite, and cups of tea, and the risk of living on a busy road. Combined with the poor perception of those living with dementia, it is little wonder people are worried. The appetite for information suggests that the public do want to talk about dementia. I saw this recently at a Q&A I participated in after the excellent theatre production The Hearing Trumpet. The play finished at 1030pm on a weeknight, and I thought: surely no one will stay for the Q&A. But stay they did and there were many questions, moving testimonials from family carers and care staff, and lively discussion focusing on a desperate need for information, support, and hope that there may be effective ways to help someone living with dementia.

Research is progressing however dementia receives far less funding than cancer, which gets 13 times as much, despite the burden of care being far greater in dementia. My research focuses on dementia care, as compared to dementia cure, the latter of which receives the lion’s share of funding support, see for example the new £250 million UCL-led hub. People seem much more interested in eradicating dementia, rather than enhancing the care of those living with it. This stands to reason given the fear factor.

Dementia care research is at an early, albeit exciting stage. My focus is on arts and multi-sensory activities that provide stimulation, engagement and pleasure. This is aligned with Kitwood’s well-established notion of ‘person-centredness’ that focusses on provision of bespoke, individualised care. Activities involving art, drama and music are showing promising results and a recent conference saw over 100 delegates present inspiring evidence that is changing the dementia care landscape, globally. My research looks for ways to connect and communicate with people with dementia whose reality may be different from the norm. The results indicate not simply alleviation of symptoms but new learning, and moments of pleasure and joy, even in the later stages of dementia. These findings are inspiring and positive, countering the scare stories. The work involves collaboration with people from different disciplines, including art, design, music, architecture, nursing, psychology, even hospitality. This type of transdiscplinary work is offers exciting and novel opportunities, and underpins the ethos of a new Dementia Care Centre at University of West London. A similar approach is seen in the pioneering work being done by the Created Out of Mind team at the Wellcome Hub whose residents are challenging perceptions about dementia through art and science collaboration.

This Dementia Awareness Week, lets unite against dementia, talk about it, and focus on making lives better for those living with the condition, but also for all of us as we grow older. I and colleagues will be in the Old Market Square in Nottingham on the 15-16th May with The Imagination Café,  a pop-up space inspired by the artwork made by people with dementia as part of the project Dementia and Imagination.

jim for transparencyThe Café showcases the innovative research work that we’re doing, challenges negative perceptions, and gives the public a chance to visit to find out more about dementia. In the café there will be a range of activities for the public to try, specially designed for people with dementia including music, storytelling, drama and art, all underpinned by research. An afternoon tea menu specially designed for people with dementia will be served by Jane Clarke, and staff from Dementia UK and the Alzheimer’s Society will be on hand to offer advice and information. Come and visit.

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It has been a while since my exhibition art in the asylum closed. after a period of reactive melancholia and an assortment of invited speaker events like art of psychiatry I am regrouping and writing a text about it. The text features an exciting band of authors including the outsider art inventor himself Roger Cardinal, Surrealism expert Silvano Levy and David O’Flynn chair of the Adamson Collection. Artwork from Adamson’s vast collection featured heavily in ‘art in the asylum’ ‘ and is currently on show as part of the Adamson festival Here is a picture of me and the wonderful John Timlin, Adamson’s collaborator and lifelong partner. adamson

Meanwhile here are some memories from the preview:

and the exhibition

plus Roger Cardinal and Nick Tromans‘ most excellent talk

Finally, my ‘9 tonne baby’ celebrated its 1st birthday recently. How I fondly remember the frosty morning the giant arrived by lorry
all the way from Petacci.

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Happy Birthday E57A0619 (2)to House for a Gordian Knot and thank you to the wonderful and talented sculptor Ekkehard Altenburger for giving us pleasure now and for centuries to come.

Being based in a linguistics department I have become very aware of the language I use. After years in medical environments I have become somewhat inured to the routine use of objectifying and pathological terminology. Although still hierarchical the academic environment I find myself in here seems softer and more aware. The overt feminist ethos for me is strangely enlightening and the ever-present theorising is stimulating albeit challenging. Of course it is right to look beyond reductionist and positivist paradigms, to be truly interdisciplinary. I have realised how little my formal education prepared me for this and how lacking it is in my usual work environment.

Almost two decades in academia have made me my lose my voice. I have become like a machine. These days I work for the British HE industry. The language has changed. There is talk of income generation, outcome measurement, performance review and student satisfaction ratings. Sometimes I feel I don’t have an original thought in my head. Until I think about art and mental health, which I will return to.

I am speaking two languages now, my mother tongue of English and my father’s native tongue, German. My father rarely spoke German to us as children. The evidence about bilingualism now points to all sorts of cognitive, cultural and social benefits, including, note to my colleagues, protection against dementia. In Basel they speak a variant, Swiss German or Schweizerdeutsch or more precisely Low Alemannic. Language switching leads to a sense of disorientation at first but becomes more like mental gymnastics, a clue as to why it is so good for you.

At an exhibition of Steve McQueen’s films at the Schaulager art bunker I confronted two big fears; eyeball touching and ageing. His film ‘Charlotte’ features a close study of the eye of Charlotte Rampling shrouded in an red inky film. McQueen’s probing finger ventures closer and closer to Rampling’s unguarded eyeball. As someone who endured 10 years of opthalmology appointments to correct astigmatism, this filled me with quaking fear. The eye is such a powerful part of our sensory equipment and yet so vulnerable. I recalled the regular visits to the doctor as a child, my head tipped back whilst the cold, dilating drops were squirted into my eyes, my eyelids blinking wildly. Then the sense of disorientation as the drops took effect. The doctor’s finger coming closer to my eye, my vision blurred, his breath on my face. And the lunch with my mother afterwards that was my reward for cooperating. I cant bear my eyes or anyone else’s being touched, how I conquered the use of contact lenses is a little miracle. McQueen does indeed touch Rampling’s eyeball and also gently massages the loose skin hanging over her eye socket, the medical term for this is dermatochalasis, big business for plastic surgeons. McQueen’s gesture is oddly tender and has a sculptural quality as he smoothes the skin gently up and away from the eye but of course it falls back accordingly to gravity after a few seconds. Yet her beautiful eye remains sparkling, unflinching. I felt touched and repulsed equally to witness this. Image

My daughter recently asked who Jodie Marsh was and why was she famous. The truth is I don’t really know who she is although I know of her. She appears on reality TV and I understand that she has had some work done i.e. plastic surgery. Sadly there is a whole industry in the UK that runs on the exploits of Jodie et al. It is nice to be away from that and playing ping pong in the park tonight surrounded by many different generations it felt like a more innocent age. We have been having some wonderfully thoughtful conversations since we’ve been here. We stood atop the remains of the amphitheatre at the Roman ruins of Augusta Raurica last weekend, as if caught between the old and new Switzerland, rolling green mountains and wooden houses in one direction and the belching smokestacks of the chemical and pharma industries in the other. We discussed the environment, relationships, and the holocaust.Augusta Raurica

Aside the opportunity to work in the wonderful Englisches Senminar in Basel I am excited to be in the vicinity of some very fine outsider art collections. My exhibition ‘art in the asylum: creativity and the evolution of psychiatry’ opens in September at the Djanogly gallery in the UK. This project has been a labour of love for me over the past four years and I am thrilled that it is finally coming to fruition. One of my favourite galleries, in Lausanne (Collection de l’art Brut) holds the collection of Jean Dubuffet who coined the term Art Brut, referring to art created at the margins of society, untainted by formal training. The term often refers to art made by people incarcerated in asylums. Perhaps my favourite artist of this genre is Adolf Wölfli a native of Bern who spent most of his adult life in the Waldau Clinic, a psychiatric hospital, after a series of serious offences he committed. His work has a complex, magical quality, full of symbols and strange mask-like faces that appear to follow you as you look. He spent many year working in this distinctive repetitive style, a characteristic shared by many other outsider artists. And yes, we have some of Wölfli’s work in the show.

Englisches SeminarIzzi in AltstadtEveryone smokes here. Well not everyone but lots of people you wouldn’t expect. Remember that stale stink from years gone by, well that is pretty common here in lots of shops, bars and cafes. Yuk. There are many specialist cigar and pipe shops too, it makes me do a double-take. A colleague told me ‘its a Basel-thing’. Apparently many locals complained loudly when a smoking ban came into force so there is a loop-hole for registered ‘clubs’ to allow people to light up. And oh boy they do. I detest smoking for very personal reasons I won’t go into. Suffice to say that the sight of a Rizla packet provokes an abreaction.

Aside from that Basel is breathtakingly beautiful, views of the Rhine, quaint and beautifully preserved 15th Century buildings, chocolate and best of all, art, art, art.

I am very lucky to have been awarded a visiting scholarship at the University of Basel, in the Englisches Seminar. The department houses English linguistics and literature scholars. The setting on Nadelberg in the Altstadt is stunning. My office is in a 17th Century building where I walk up a spiral staircase each morning. I feel inspired. Nietzsche and Jaspers are graduates of the UniBas, as its called round here.

My daughter Izzi, who doesn’t speak German, has started at a Swiss-German speaking school and after only a few days she is singing songs in the local language. She Is very happy. She is impressively fearless, unlike me at her age. Schooling here seems very different to the UK. They all walk, unaccompanied, start at 0800, and have 2 full and 3 half days school per week. Oh and kids have a 2 hour lunch break each day. Nice but not ideal for a mother who works full time and has no family to help out. Swiss parents protested and now some schools offer Tagestrukturen (day structure) which provides lunch and after school care for parents who work full time.

We’ve been having fun too. I bought an annual Museums Pass which allows unrestricted entry to all the galleries and museums in this part of Switzerland and also parts of nearby France and Germany. Im told that Basel has more private art collectors than anywhere else in Europe. On Wednesday we visited Fondation Beyeler, an amazing private collection turned over to the public in a beautiful setting in Riehen. The Ferdinand Hodler retrospective was a study in narcissism, death, and obsession. Perfect fodder for a psychologist! I was fascinated by his personal life. He took a lover called Valentine Gode-Darel who bore his child Paulette when he was aged 61. Valentine was diagnosed with cancer and Hodler documented her dying and death in an extraordinary and moving series of paintings. Hodler’s wife Berthe later adopted little Paulette. How I wished to know more about Berthe and her state of mind.

We found an amazing Latterie in Riehen too ‘the good life’. The gelato was incredible. We sat in the sun and savoured the chocolate and vanilla. Joy.

More on my Art Brut obsession soon, the secret reason for my time in Switzerland…