Ward 23 - dementia in hospital - reposted

November 25th. Yesterday I accompanied a clinical psychologist on a visit to Ward 23 at the Queen Elizabeth Hospital in Gateshead.  Only couple of years old, it was designed specifically for older people with mental issues who have been brought to hospital with some kind of physical problem, the ward is one of only three in the country set up in this way and is a bit of an experiment.  More commonly hospitals would not separate so distinctly those with and without mental conditions meaning that a whole ward could be disrupted by a few people with dementia. 

Out of the 24 patients on Ward 23 most seemed to have some kind of dementia and were still just about able to walk. Several wandered up and down the corridor looking lost, others sat in a group waiting for an imaginary bus to take them home.  The nurses and auxiliaries I met seemed kind and caring and were doing what they could to keep on top of things.  The doctors knew each patient's case intimately and were working to get them out of hospital as quickly as possible. They objected to recent reports  about over-sedation of the elderly in care, saying on their ward it was only used as an absolute last resort.  However there are only ever between 4 and 8 nurses on duty at any one time, when in an ideal world you would probably want 1 on 1 care for many of the patients.  One of the nurses explained how difficult it is to know what to do with the patients, "Look at them" she said, pointing to the group hanging around expectantly in the corridor. "They're all ready and waiting to leave right now. There's no way to persuade them that they're not going anyway..."  

I listened to the psychologist talking to a patient who didn't have dementia but was feeling very low.  She was clearly aware of the poor state of her own health and there wasn't much he could say to change her heart.  I couldn't help comparing her in her entirely justifiable depression with the joking and flirtatious lady with dementia who held my hand while lining everyone up to catch the bus for the tenth time.  Without wishing dementia on anyone, it does at least offer the potential blessing of sparing the elderly sufferer the awareness of their own predicament. 

I hope to be able to film on Ward 23 because I think it's somewhere that graphically shows how difficult a thing dementia is to deal with, particularly on an institutional scale: It's a 'state of the art facility', the staff are good and as well trained and experienced as any you will find anywhere, but it doesn't mean they don't struggle to cope with the harsh reality of dementia.  

It's going to be incredibly complicated to get the necessary consents from the patients to film there although Gateshead Health Trust does seem to be behind the project.

SPECAL CONVERSION

After reading and posting about SPECAL, the organisation run by  Penny Garner (which proposes a radical but highly practical approach to caring for people with dementia) I contacted them and asked if I could film one of their training days.  Penny herself replied and suggested I should start by participating in one of the courses.  So I signed up for a one day session for professionals working in the care sector.   I spent Thursday at their headquarters in an old hospital in Burford near Oxford with a group of people who had come from as far as New Zealand to learn how to apply the Specal way to their work.  Making up the group were managers of nursing homes run on holistic principles, psychiatric nurses working for the NHS who objected to the over-use of medication to tranquilise patients with dementia, a journalist, a lawyer working with vulnerable elderly clients, and a behavioral therapist.

In the morning 2 female volunteers went back over the ideas in the book, clarifying what SPECAL is about, then in the afternoon Penny herself went into greater detail and discussed strategies for converting nursing homes or other institutions into SPECALed environments. 

As yet I haven't seen SPECAL in action with a 'client' (as they refer to those with dementia) but from all my current understanding of it and my experiences of dementia, I think its a completely sensible and excellent idea.  Penny is utterly convinced that with time its principle ideas will be adopted nationally and internationally as THE way to cope with the problem of dementia.  The problem is that at the moment she is struggling to get the backing of the Alzheimer's Society which dominates the field and is actively distancing itself from SPECAL. On its website it has a statement outlining its reservations:

"SPECAL in particular supports the view that it is acceptable in many instances to lie to people with dementia and to move away from offering them an effective range of choices."

Bizarrely, immediately below their statement they have published an account by a lady called Pam for whom SPECAL worked and was the answer to everything.  She writes:

"I felt I should write this article so that the many people who are living with this dreadful disease, both carers and sufferers, should feel some hope that there is a potential way of coping with the disease. I have met many people who are as devastated as we were. I believe everyone should at least have the opportunity to access SPECAL."

From everything I can understand about the situation, the problem is that large institutional bodies like the Alzheimer's Society and the NHS can't embrace SPECAL because of the way it accepts dementia for what it is, and then exploits the few benefits it has to offer. For example, the fact that someone with dementia doesn't get bored of repetition means that you can constantly return to a memory or action which makes them feel safe and in control, as opposed to being lost and confused. The central goal of SPECAL is to create and sustain permanently the 4 states of emotional wellbeing: 

Personal Worth        Agency        Social Ease       Trust

Yes, this does involve a degree of deception but it must be done out of love and in good faith in order to avoid the far more cruel alternative; that being to rub the sufferer's nose in the truth of their dire prognosis. Of course people with dementia should be given the chance to exercise choice for as long as possible but there comes a time when such politically correct considerations become meaningless.  This is a matter for the judgement of the individual's carers, one of many difficult decisions that have to be made as someone becomes progressively more dependent.  Perhaps SPECAL should produce something like a Organ Donor card which says "If I ever get dementia I hearby give my consent to be guided into SPECAL LAND by those who know me best:________"

A woman on the course had the theory that in order for the  Alzheimer's Society to get its funding it needs to sustain the narrative that dementia is a hopeless, horrible, disease for which a cure must be found by people spending loads of money on medical research. The fact that SPECAL's book is called 'Contented Dementia' is too much for them to handle...  

Penny is convinced that that the field of dementia care is nearing a tipping point and as a separate documentary project I think it could be interesting to follow the story of her attempts to bring about this transformation.  Either way next week I am going back to film their weekly Friday session where clients and their careers spend the day at the centre. I am also going to try to film at the Beth Ezra nursing home whose staff have done the same course and are apparently experiencing good results.  

Engström and the possibilities of Narration

Last week I participated in a photography workshop led by celebrated Swedish photographer JH Engström, whose books Trying To Dance and Haunts are strange and lyrical in a distinctly Scandinavian way.  I'm very inspired by photographers like Engstrom, who create profoundly poetic work by photographing the world around them in a seemingly straightforward way.  

For me the point of a workshop is to use the energy and atmosphere of the 5 days to push past self-imposed boundaries.  I participated as a filmmaker and JH encouraged me to try adding my own text and voice as a narration over the 'image-films', like TRAUM, that I usually make to work with music.  In the past I have avoided narration like the plague, dreading hearing my own voice and believing that the footage should be able to tell the story.  I made this short film after an awkward failure on the first night of the workshop after we had been set the task of photographing/filming something you identify with...

I realised after the workshop that a narrated voice-over might be the best way to link the different ideas I'm exploring with this Memory research project.  I can start to see how I could make a film that recounts the journey of the research itself, structured around the questions and themes contained in this blog, narrated by myself in a fairly free and subjective way.  One of my favorite films is The Gleaners and I by Agnes Varda, in which she effortlessly narrates a road trip of research, discovery and random encounter.  For the NL festival in March I would like to try to emulate this kind of essayist approach to explore the question: 'What is happening in my sister's head'

Digital Dementia (and a boring Production Schedule)

Lisa at Northern Lights told me today that The Baltic Centre For Contemporary Art in Newcastle has offered to host part of the NL festival on the first floor, where there is a cinema and conference space. The idea is to organise a program of events for the first day to include talks and screenings on the theme of memory and aging, and hopefully to premier this film I'm working on there.


To Click here to see an ever evolving production schedule for this project courtesy of my ever ubiquitous google remote memory.


Talking of which... this last week I have struggled to function.  My internet has been down most of the time and, being so google-cloud dependent, reliant on them for email, calenders and documents, it felt like I had developed some form of Digital Dementia: my information is there somewhere, but I just couldn't access it.  As my time was almost completely consumed by running and taking part in photography workshop, it was a strangely liberating experience.  I had the feeling that it was the first time I had consistently concentrated on something new for a long time.


I then looked up the term and discovered it's already been coined and seems to be particularly prevalent in Korea.


From KBS World:

Digital Dementia or Alzheimer’s

Digital dementia refers to a kind of forgetfulness suffered by urban or professional workers due to the flood of information that assaults them in the office and their growing dependency on digital devices. The main cause of digital dementia might be excessive use of digital devices. Dementia and Alzheimer’s are diseases caused by damage in the brain, but “digital dementia” is not a disease and instead a kind of symptom caused by social phenomena.

	Types of digital dementia
	ㆍNot remembering names, phone numbers, numbers, etc. at critical moments ㆍNot remembering one’s own home phone number, ID number, account number, passwords, etc. ㆍNot remembering what one had for lunch.

The lessons of Neurological Wonder Cases:

This excellent hour long 'Radiolab' show about Memory and Forgetting begins with a piece about new research into the formation and recollection of memories, revealing them to be fluid, artistic creations of the mind, reinforced but also irrevocably altered on every remembering.  Memories, it seems, are precarious and unstable things which if left undisturbed are less likely to change, or so the theory goes.  That a mind should eventually give way seems like a horrific waste of accumulated precious experience.

The show ends with a piece about  Clive Wearing “the most severe case of amnesia ever documented.”  Oliver Sacks explains how Clive lost his entire memory after an unusual illness damaged his brain, leaving him unable to remember beyond the past seven seconds.  In the New Yorker article Sacks wrote about the case, he explains how only through playing and conducting music does Clive manage to transcend the terrifying abyss that confronts him at almost every other waking moment.

Clive's wife Deborah writes in her book: 

"The momentum of the music carried Clive from bar to bar. Within the structure of the piece, he was held, as if the staves were tramlines and there was only one way to go. He knew exactly where he was because in every phrase there is context implied, by rhythm, key, melody. It was marvellous to be free. When the music stopped Clive fell through to the lost place."

Although my sister J's episodic memory is not as bad as Clive's, it is clear that her patchwork quilt-making provides the same binding structure for her experience of time as music does for Clive. The  hexagonal pieces of cloth she carefully stitches together combine to form an ever expanding, yet completely stable map of time.  The sight of the patchwork itself, the beauty of the combination of colours and pattern, provide J with a continual affirmation of her own creative agency, normally the thing most decimated by dementia. She is now working on a huge quilt. It grows incredibly slowly, but J is in no hurry.  It is a perfect visual metaphor for Bergon's idea of time as Duration as opposed to the extensional time of episodic events made possible by our short term memory.


Another of Oliver Sacks's cases, Jimmie 'The Lost Mariner', featured in "The Man Who Mistook His Wife for a Hat" also suffers from continual total amnesia.  When he is admitted to the Home where Sacks works he seems to be completely lost to the present, stuck in 1945, the moment his memory cuts out, unable to exist in the present. Yet during the 9 years Sacks observed him in the care home, during which time he learnt to garden among other things, he seemed to undergo an unlikely transformation which ran counter to his hopeless clinical diagnosis. 


"...neuropsychologically, he has not changed in the least... But humanly, spiritually, he is at times a different man altogether- no longer fluttering, restless, bored, and lost, but deeply attentive to the beauty and soul of the world, rich in all the Kierkegaardian categories - the aesthetic the moral, the religious, the dramatic...  Perhaps there is a philosophical as well as clinical lesson here: that in Korsakov's or dementia...however great the organic damage... there remains the undiminished possibility of reintegration by art, by communion, by touching the human spirt; and this can be preserved in what seems at first a hopeless state of neurological devastation."  (p.37)