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The Edges of Everywhere: Poetry by people living with memory loss
Karen Hayes 2007
Bristol: City Chameleon
This is the intriguing title of a book of poems by Karen Hayes which has just been published. It is a collection along the same lines as John’s ‘You Are Words’ and ‘Openings’, with poems assembled by Karen from the words of individuals with dementia who attend a day centre in Bath.
There are also some poems by staff at the centre which provide a very valuable contribution, and point to important new directions and possibilities in terms of how staff and other supporters can reflect on their role and make sense of it in both a personal and professional way.
Some of the titles of the poems give you an idea of the flavour of this stimulating anthology:
No eyelashes, no eyebrows and no nails
Are our waggons here yet?
Trying to get the children to eat fish
Swinging legs and swinging waists
We first heard poems from the book read by Karen at the Dementia Congress in Bournemouth last year. She has a magical way of reading them, no doubt drawing on her training and experience as an improvisatory actor, which immediately conjures up a powerful sense of the individual who originally spoke the words.
The Edges of Everywhere will be launched at the Peggy Dodd Centre, Bath on Saturday, 8th September, and Karen will also be reading from it the following day at 2.0 pm at the Arnolfini Gallery as part of the Bristol Poetry Festival. John will be taking part in both events.
The book retails at £4.99 and is available from City Chameleon
(PO Box 2354, Bristol BS6 9ZN tel: 0117 9080 840)
Sounds Sensational
In October 07 John paid a visit to the Little Missenden Festival in Buckinghamshire, where he attended a programme mounted by an ensemble with this title. The main item was a kind of cantata 'On Being' commissioned by the Festival with funds provided by the Arts Council and composed by local composer Janet Davey.
The work comprised settings of five of the poems by people with dementia which feature in John's books You Are Words and Openings . These were sung by the international soprano Sarah Leonard accompanied by two professional percussionists and the composer on the piano. There were also contributions from three children's choirs and three choirs of older people from the local community. It was a unique occasion.
Janet is now working on an extension of the cantata and is hoping to interest BBC Radio 3 in it.
My Brilliant Brain
This is a series of 3 programmes by Windfall Films which was shown on Channel Five during July and will be on the National Geographic Channel in the USA later in the Summer. Each programme focuses on the brainpower of one or more extraordinary human being.
The third episode ‘Accidental Genius’ was particularly interesting. It featured the Liverpudlian builder Tommy McHugh, who woke from a coma having sustained a very severe brain haemhorrage to find that he had a compulsive appetite for painting, despite never having previously been at all interested in art.
Although illustrating the thesis by means of a savant, a person with a disability who has developed an outstanding talent, the message carried by the programme is that a similar ability may be locked in each one of us. Professor Alan Snyder, an Australian neurologist, believes that as the mind learns language and reason other pathways are blocked off, and he is attempting to show the effect of temporarily unblocking such channels by means of powerful magnetic forces.
You can find out more on timesonline, and click here for a PDF of an academic paper about him.
You can also listen again to a BBC Radio 4 programme about Tommy and his work (Programme 2) which was broadcast in 2005.
Tommy is currently in the process of building his own website - bookmark it and visit it in future.
The picture shown is of a work entitled 'Swan-head-horse'.
Art and healing
On Friday 11th May BBC Radio 4's programme You and Yours ran a feature on the benefits that seeing paintings, murals, sculptures etc can bring to staff, patients and visitors in healthcare settings. It ranged more widely than that, however, to include therapeutic approaches involving arts activities, music and drama.
It featured a very valuable contribution from Harry Cayton, whom many will remember as a highly effective Chief Executive of the Alzheimer's Society in London. Unfortunately it is no longer possible to listen again to the interview, but you can access a PDF copy of the Report of the Review of Arts and Health Working Group, of which Harry Cayton was Chair.
You may also be interested in finding out more about Waterford healing arts project via the Department of Health site. You can also access more information about this project at Waterford Healing Arts Trust.
(See also the entry further down on this page about Quentin Blake's art in units for elderly people.)
John on BBC Radio 4!
You may or may not know that John appeared on BBC Radio 4's magazine programme Saturday Live on Saturday 3rd March, 2007.
You can hear this interview via the Saturday Live website here.
You can also read comments about the interview posted on the programme blog here.
We have had a number of very interesting and encouraging emails from people who heard the programme. Do let us know what you think by getting in touch here.
'Journal of Religion, Spirituality & Aging' - Special Issue
The 'Journal of Religion, Spirituality and Aging' comes from the Haworth Press in America. The current issue (Volume 18 Number 2/3) is the first of two devoted to papers delivered at an international conference held in Adelaide in 2004. The title of this biannual event was ‘Ageing, Spirituality and Palliative Care’ and it was organised by the Centre for Ageing and Pastoral Studies in Canberra.
This special issue includes a piece by John entitled ‘Helping the flame to stay bright: Celebrating the spiritual in dementia’.
As you might expect, the contributions are variable in subject-matter, approach and relevance to dementia but overall a high standard is achieved. Harriet Mowat is (amongst other roles) Senior Lecturer in the Centre for Spirituality, Disability and Health at Aberdeen University. Her paper on the current state of spirituality and health care for older adults in Scotland is one of the most provocative. For example, she identifies a number of conflicting ways of understanding later life, one of which is to embrace ageing for the opportunities it presents to the individual. She associates Tom Kitwood and his interpretation of the concept of personhood with this stance. She goes on to say:
Social science and practical gerontology have promoted this idea strongly in Scotland. The Dementia Services Development Centre at Stirling University is an example of a campaigning, almost evangelical organisation that promotes anti-ageist care and encourages a positive view of even the most devastating of illnesses associated with old age. This position is potentially
uncompromising and holds the danger of being prescriptive. Its very attempt to regain the individual in old age leaves it open to reject those individuals who do not fit the creative individual prototype….
We are not sure we agree with this view entirely, but it is certainly worth thinking about. Do you have any responses to it that you would like to share?
Jenny Thompson-Richards (aka Dr Woops) is an Australian clown doctor* and works regularly in a hospice in Adelaide. Her piece is a series of vividly written cameos of working with individuals and their relatives in the hospice. In the following quote Pat has dementia and is dying. Susan is her daughter:
From her tiny clown teapot TeapoT eyes Susan and pours out Sereni-Tea for her, and deliberates before giving Tranquili-Tea to Pam. Woops gets Moosicali-Tea, greedily and noisily slurps it, realizes her rudeness and apologises loudly. More laughs. TeapoT shows them a beautiful scene with a curving path that curves through green rollong hills and vanishes over the horizon. She pours out Eterni-Tea for Pat. We all draw breath. We pause. Susan and Pam have wet eyes. The act of collecting the teacups and tea cosies brings forth more silliness and laughs. We leave with a flourish.
Perhaps the most outstanding text is by Michael Barbato, a doctor with 15 years’ experience in palliative care. His essay is full of humility and wisdom and is entirely without medical jargon. It also full of the words and experiences of other people, as in this excerpt which follows on from a description of how Mavis, a woman with advanced cancer, was experiencing profound depression and isolation:
Reluctantly she agreed to attend an art therapy class where one of the tasks that day was to draw an apple. Much to the therapist’s surprise, Mavis quietly engaged in the activity, but rather than draw the apple, she drew an apple core. Later she revealed how this image put her in touch with overwhelming grief. She had for the first time found an image that helped her connect what was happening on the inside. She could now ‘see’ how the cancer was destroying her body as well as her life and this resonated strongly with the grief she felt. This unexpected realization was a turning point for her. She opened to the feelings in her heart, which until that time had all but paralysed her. What she had drawn was the metaphorical food that provided substance for reflection, exploration and dialogue…
* To find out more about Jenny Thompson-Richard’s organisation and other similar ones, see:
The Humour Foundation
The Gesundheit! Institute
Hearts & Minds
New DVD: Almost Home
This major documentary, nearly one-and-a-half hours long, was made by Brad Lichtenstein, and was shot on location in Saint John’s on the Lake, a nursing home in Wisconsin. It tells the story of an attempt by a young manager to introduce person-centred care into an institution hitherto dominated by the medical model. There is no narration, but we get to know a number of individuals: members of the management team, care staff, residents and relatives. We see them interacting and they also speak to us on camera.
This is the DVD we have been waiting for: a rich mix of incident and comment, sensitively filmed and brilliantly edited. It raises in as vivid a manner imaginable almost every issue you could think of: institutionalisation, communication, relationships, regime-change, sexuality, cultural backgrounds, pay differentials…
It is ideal for training purposes, and though it can be watched as a seamless narrative, is also structured into 32 episodes. There are 12 additional tracks devoted to further consideration of topics such as effecting culture-change, addressing grief of staff, and introducing activities.
In short - highly recommended!
The DVD costs $45 for individuals and $75 for institutions. Details of how to obtain it can be found on the Almost Home website.
Developments in Dementia Advocacy: Exploring the role of advocates in supporting people with dementia
Sally Wells 2006 London: Westminster Advoacacy Service for Senior Residents
Advocacy with people with dementia is a new and dynamic area of work which is becoming increasingly integrated with other sorts of services. This new book is an indispensable resource for anyone who is working in the field and for service providers who have contact with advocacy services. It will also be useful for students and researchers, and anyone who is interested in what it really means to engage with the person and try to understand their experiences and needs.
The author is a very experienced practitioner (both in terms of work with people with dementia generally and in her role as an advocate), and the book has been published by the Westminster Advocacy Service for Senior Residents, a very well-respected advocacy organisation. It is written a clear, direct way which avoids jargon, and there are numerous accounts of situations in which advocates have worked which illustrate issues and approaches.
The book brings together pertinent information about the development of advocacy with people who have dementia, discusses the various models such a service can take, and approaches used. It examines a range of practical and ethical issues which commonly arise in this area, including that of consent. Advocacy with people with dementia is still a very recently established field, and there remain many important questions about how it can and should work. The honesty and openness of the author in acknowledging the extent to which advocacy workers are “required to draw on their ethical and moral compass” in the course of their activities, for example, is admirable and welcome.
Very well worth obtaining, reading and keeping on a nearby shelf.
It is available through the WASSR website.
Art, humour and older people
A few months ago (29/05/06) 'The Times' newspaper (T2 section) carried an article about humorous cartoons featuring older people by the Children's Laureate, Quentin Blake being displayed in a London hospital ward for older people with mental health problems.
In this very unusual and progressive initiative art was commissioned in order to enhance the physical environment in which older people spend time, and to provide a humorous, positive and "energising" image of later life. One person with dementia commented "These pictures attract me so much. He reminds me of my grandpapa."
You can read the whole article online (but unfortuntately without the pictures) here, and more information about the project generally is available through the Nightingale Project website.
Poetry and mental health
The edition of 'All in the Mind', BBC Radio 4's magazine programme about mental health, which was broadcast on 25/04/06 featured an item on the role of poetry for people who have experienced mental distress. You can listen to this online by accessing the All in the Mind website.
New film: Unknown White Male
This is an independently- made British documentary on limited release, difficult to track down, but definitely worth the effort (Amazon will sell it when it is released on DVD in early September).
It tells the story of American Doug Bruce, who, at the age of 37, suffered a total and inexplicable amnesia. The film re-enacts his first days of panic and bewilderment, and then Doug himself takes over (he was training to be a photographer), and we follow the story of the next 18 months, a period in which he is reintroduced to his family and friends, and tries to come to terms with the changes in his life.
We actually see Doug meeting up with his father and sisters and friends in Spain, New York and London, none of whom he remembers. This is footage shot at the time, and the director also interviews these people to gauge their reactions. At the same time Doug confides his innermost thoughts and fears to camera. Everybody agrees that he is a changed person and is creating a new life for himself.
He exhibits a child's view of the sensory world, with an adult's ability to reflect on and generalise from his experiences. There are intermittent commentaries throughout by various specialists, most notably the psychologist Daniel Schachter.
The film is extremely thought-provoking, and anyone interested in the nature of memory will gain much from it in the most immediate way.
Find out more about this film and view a trailer here
This review was written by Danuta Lipinska, who is a counselor and also does training and consultancy work with services for people with dementia.
The House on Beartown Road: A Memoir of Learning and Forgetting
Elizabeth Cohen
2003 New York: Random House
What a treasure to unearth this novel . Whilst so much has been written about Alzheimer's and related dementias, it seems we readers are flung between extremes. One tends to veer towards sentimental schmaltz or the other, academic 'jargobabble' . Apart from a few remarkable books, there is a dearth in the novel category, and some attempts bear little if any resemblance to the reality of my mother's ordeal and most other families' experience. In this case the novel is autobiographical and there is a rare quality in a book about living with dementia: 'page turner' appeal.
The House on Beartown Road weaves for us stories within stories, a rich and complex fabric of lives. Sometimes luxuriously enfolding and warming us, sometimes tatty and shrivelled and very ugly to feel. Elizabeth Cohen manages the unmanageable, the birth of a daughter, and the move to the back of beyond with bears as neighbours. Add to that a runaway husband and a move - in former academic dad with Alzheimer's ; a mother in denial and physical ill health ; an uppity and less than helpful sister , and you get a glimpse of the picture.
The one thread of sanity is the author's career as a columnist for the local paper, which she manages in spite of herself. Hence her candid and often eloquent, mainly heartbreaking, and, at times, humorous prose.
We glimpse the sublime and the joyful as she discovers the marvellous parallel worlds of toddler and father. One develops memory and meaning in spadefuls; the other losing it in bucketloads, yet both happily in the sandpit together.
Her observations of them both and her sensitive understanding of what is happening in tandem brains is remarkable, made more so by how she learns to love and value the gifts of both where all seems lost.
Her mother helps her t o 'reframe' what is going on with her father. "He has a good fogettery "; as good as his memory once was. This is a reminder of how helpful families often find it to ' reframe ' the pain and the loss in ways that are meaningful and positive.
But this is no sugarfest; we taste the fear of losing oneself and one's parent; squelch in the muck toddlers, pets and dads having accidents can make , and bristle with rage and absolute frustration oozing from every pore. Spiralling down into depression and self- neglect , the author takes us to places too squeamish for some books. On the upside there are tasty nuggets of information and neuroscience made easy.
To ease the journey , which at times is bleak beyond belief , there are lifesaving neighbours baking cakes and clearing snow , a wonderful home carer and faithful friends . Even the bears, for the most part invisible, bring their own hope, solace and magic.
And always there are the moments when we see with the author, the toddler and her 'Pop-pop' in perfect harmony, enjoying their overlapping worlds where each is perfectly understood, accepted and loved.
I could hardly help thinking, 'out of the mouths of babes...' There is much to learn and much to cherish in this book. Read it and lend it to a friend, and keep a lookout for the bears!
Dementia: Mind, Meaning and the Person edited by Julian C Hughes, Stephen J Louw and Steven R Sabat (published by Oxford University Press, 2006)
This book is a tough one, but it is also an important one, dealing as it does with philosophical issues around personal identity and dementia, and approaching them from a variety of perspectives.
Amongst the contributors are philosophers, psychiatrists, psychologists, experts in biomedical ethics, a geriatrician, a social worker and a priest.
It consists of 18 close-packed chapters full of ideas, arguments, case studies and quotations. Nobody interested in the fundamental existential issues raised by dementia can fail to profit from reading this book. Few could attempt it, however, without admitting, at times, to bafflement.
One of the most straightforward chapters is written by bioethicist Stephen Post who returns to a theme he has explored so eloquently before. He expounds the ethical arguments for rejecting the 'hypercognitivity' of our culture, and urges us to embrace a culture of care in which we "reveal to them [people with dementia] their value by providing attention and tenderness in love". He suggests the rewriting of Rene Descartes' conclusion "I think, therefore I am." to "I feel and relate, therefore I am." (p.233 ) .
Another memorable sentence is found at the end of social worker Lisa Snyder's chapter (p.274 ):
We must position people with dementia as our teachers and we must listen to them as if the well-being of humanity depended on our understanding.
(November 2005)
Dementia on BBC Radio 4
You may be aware that in Autumn 2005, BBC Radio 4's consumer affairs programme 'You and Yours' ran a month long series on various aspects of dementia. They had daily features lasting about 10 minutes on many different subjects.
John gave an interview on poetry and communication, and we were both interviewed about our recent work in Australia with people with advanced dementia (as part of the palliative care feature).
The transcripts of all of the features are available on the
You and Yours website.
(May 2006)
John has been to Canada!
The following is a brief report of his trip:
At the beginning of May I spent six very stimulating days in Vancouver.
The main reason for making the trip (which was funded by the Dementia Services Development Centre in Stirling University) was the 2nd annual conference of the Society for the Arts in Dementia Care. The title of the event was 'Creative Expression, Communication and Dementia'.
My presentation was entitled 'Making sense of dementia through metaphor', and it seemed to go down well.
During the conference I attended Anne Davis Basting's 'Timeslips' course. Anne is Director of the Center for Age and Community, University of Wisconsin, and Timeslips is a programme which supports the use of creative storymaking as a means of communication for people with dementia. You can find out more about Timeslips here
Another inspiring session was that run by the Edcon Group
from Kansas, which covered ideas for activity and a very moving video example of palliative care.
I was also delighted to have the opportunity to renew contact with Hilary Lee, an occupational therapist from Perth, Australia. (Kate and I met her a year or two back during a visit to Western Australia.) Among other things, Hilary is involved in a very exciting tapestry weaving project for people with dementia. We hope to be able to feature this further on Dementia Positive in the near future.
During my short trip, I also visited the Centre for Research into Personhood in Dementia, which is a fairly new organisation within the University of British Columbia in Vancouver. It is staffed by a very multidisciplinary group, and they are doing exciting and important work. There I gave a colloquium (a presentation followed by discussion) about the 'Getting Through Initiative' Kate and I were involved in in Australia in 2004-5 (see Communication Projects.).
I made a number of other contacts during my time there which I am sure will be helpful in the future. The weather was amazing and I have decided that Vancouver is the nearest to a dream city that I have come across!
(May 2006)
Creative goings-on in Ireland
Last week we were both in Dublin to present at the Journal of Dementia Care conference.
Whilst there we were delighted to find out about the Bealtaine 2006 event which is run by Age & Opportunity . It is a month-long, Ireland-wide festival celebrating the creativity of older people.
The organisation also has a project, called Arts in Care, which concentrates on equipping care staff to engage older people using services in creative work.
(2006)
Going to the Pictures
This was the title of a mini arts initiative run by John in the Scottish Borders during 2005 as part of the arts project at the Dementia Services Development Centre in Stirling .
It involved small groups of men and women attending a day centre. They were shown unusual photographs and video clips in a supportive context, and feedback/discussion was encouraged. This resulted in a great deal of reflection, laughter and relationship-building.
It is the sort of activity any service could organise and develop. We would be delighted to hear from anyone interested in providing such a group or feedback from similar initiatives. Email us at the address below.
An article about the project written by John was published in the journal Signpost.
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