Dementia Poetry

I was recently introduced to the work of John Killick by David Lale, a filmmaker also interested in the subject of dementia.


Killick is a writer who has published two books by of poems by people with dementia.  The poems are fashioned out of the speech of individuals with the condition.  He explains,


"I write down or tape-record, and then transcribe, the words of a person. The resulting poem involves selection, but I never add a word. I share the poem back with the person and seek their permission to show to others, and in some cases to publish. "


He gives these poems a title and form on the page.  They are beautiful and poignant.  Some read like a monologue from a play by Samuel Beckett; the sentences struggle to work, nothing is certain and all linguistic rules seem provisional.  But even the most confused collection of words offer more than mere clues, they speak for a person living in a world of feeling, a human being with worries and desires who should be listened to carefully.  Killick believes that to approach these texts as poetry helps one to bypass the often unhelpful habits of rational thought.   I would agree that to tune into, and give attention to the seemingly bizarre metaphores and images created by someone with dementia, a carer can gain important insights, which can be used by a Specal-like care approach to make the sufferer's life much less frightening.





ON THE OTHER SIDE

I'm just going round to see what's round the corner...

I've lived here twenty-five weeks in the city,

up and down the language, twice up and down...

I'd better just have another look...

I'll tell you if you can understand the language.

And I'm talking, talking all the time...

I'm just off to see if it's changed at all...

I didn't know if you would understand,

with you living on the other side...

I'll just see if it's all right over there...

Young girls wearing white on the other side

of their dress getting married...

I'll just see if I can get far enough along...

©John Killick

Other poems are full of memories, this by Ian McQueen, "a younger man with dementia from the west of Scotland",

DEFENCE

            Bobby was bigger than me.

            And when I got it, I got

            a right good thwack from this bloke.

            He just ladled into me,

            and I couldn’t stotter, I was

            lying in the playground. Biff. Out.

            Bobby was going to get a doing.

            And I administered it.

            If you steam into me: Stars.

            I cloaked myself in my self

            and that was good for me.

            I got that from him too.

            I had my dose

            and Bobby had his dose.

            Big Al’s bigger than me too,

            but I’m not going

            to lie down under his blows.

            He’s in there. I can still

            cloak myself in my self.

Institute of Ageing: A tour

While in Newcastle last week I revisited the Institute of Ageing run by Professor Kirkwood.  I was shown around their suite of new buildings mostly paid for by the Wellcome Trust, full of sparkling new laboratories and rooms for examining volunteers for the multitude of clinical trials that are running at any one time.  

In order to understand the effects of ageing on the brain, much of the important research depends on studying volunteers in the later stages of life right through to death, when their donated brains are carefully removed for detailed analysis and storage.  They are kept in the Brain Tissue Resource, or brain bank, where over a thousand of these donated brains are kept either in specially cold freezers or preserved in tubs. For inspection, the brains are usually sliced very finely for examination under microscopes.

I was also shown the 'Gait Lab', a windowless room full of cameras, where they use Motion Capturing technology, designed for the animation film industry, but used here to examine the effects of different diseases like dementia with Lewy bodies and Parkinson's on the way people walk.  Apparently it could be used as a diagnostic tool in the future, because movement is one of the first things effected by both diseases.

The institute is also home to one of the most powerful MRI scanners in the country.  It is used to examine the brains of living volunteers to try to understand how exactly brains are effected by diseases like Alzheimer's, and how these changes alter the behavior of the sufferer.

My plan is to return and film interviews in and around each of these locations  with a leading researcher in each field, to try to construct a comprehensible picture of the current state of research into dementia, and how it is understood.

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)

Showing Rushes

While in Newcastle I spent a few hours at Yipp HQ showing Patrick Collerton the footage from my recent stay with my sister.  Its one thing to write this blog and waffle on about theories and intentions, and another thing to show the footage itself, and to look at it with a critical eye. 

Patrick was very quick to see what I had done and more importantly what was missing.  I had only filmed when alone with J, and as a result of the way I try to be very calm with her, everything I had filmed of J was somehow similar.  By not filming her interactions with anyone other than my polite self, I hadn't given her a chance to fully be herself on screen.  As a result I ran the risk of objectifying her in her 'illness', precisely the thing I had set out to avoid. 

  

When filming someone and somewhere you know so well it's often hard to gauge if it would interest an outside viewer as it does yourself, which is ultimately an important consideration. It's difficult to get that distance. But Patrick seemed to find J very intriguing and agreed that where she lives is remarkably beautiful, and his general encouragement was reassuring.

Institute of Ageing and Health: A Newcastle Suprise

I travelled to Newcastle yesterday to meet Professor Kirkwood, who runs the Institute of Ageing and Health at Newcastle University.  He explained that it has become the biggest research centre for age related issues in Europe:  Below the meeting room where we sat were over 1000 deep-frozen brains in the Brain Bank, and in the various buildings around the Campus for Ageing and Vitality, a huge range of interdisciplinary research was being carried out, some of unprecedented scale, such as the 85+ Project, for which 75% of the population of Newcastle aged 85 in 2007 is being assessed in incredible detail in an attempt to gain data about a poorly understood, but rapidly growing part of the population.  Prof. Kirkwood explained that the average life expectancy for people in the UK is increasing by 5 hours every day, and that globally it is increasing even faster.  In his opinion, the Aging of the world's population poses a problem of equal, if not greater magnitude to that of Global Warming.  

He expressed a great interest in my project and hopefully will be able to help open some doors for my research as well as joining forces with Northern Lights to create a special event for the festival in March.

What is the good life?

Usually when I am with my sister I encourage her to do things with me that she might not do if she's on her own (as she wouldn't know where to start) like gardening, cooking, and going to the market. On this recent visit I still did quite a lot of that, but I also made an effort at times to be less proactive, to see what she might do as if she were alone. I had originally imagined that being around with my camera would disrupt things, but it turned out that if she thought I was busy doing something else she would very quickly get on with her usual life, and didnt seem to mind if I filmed her.
She spent her time doing one of the following: looking after certain plants in the garden, picking leaves for the rabbits, working on her patchwork while half watching M3 TV channel, making expresso coffee and enjoying it while smoking and looking at the view, looking at the sheep through binoculars, feeding Max the cat, letting Max in and out of the house, glancing through the Herald Tribune (delivered daily by the postman) and cutting out the Calvin and Hobbs one.
I write this list in an attempt to get to the fact that despite her lack of memory she is able to pass the majority of a day doing a variety of things that she has always enjoyed in her life. The fact that she does the same things every day doesn't seem to matter to her because she doesn't feel that kind of boredom. 
At the same time I think the visits she recieves from the three ladies which our family has arranged, are incredibly important. They take her out shopping in the market and for meals in cafes, or just visit for tea.  She doesn't seem to remember these trips or visits at all, but I am sure that her body and spirit remembers the stimulation she gets and as a result she feels like she's living a fuller life.
I think because she has this combination of routine and variety means she genuinely feels she's living a good life even though she knows things are not all right in her head and she is not independent. Despite know that, her stable set-up means she feels calm enough to be able to really enjoy the simple things that make up her day without worrying that something is wrong.

Methodology

Sounds as if there's a lot of undercurrents running beneath the day to day life. I was just wondering if you've tried having or filming a conversation where try to follow the stream of your sister's memories. If you have, how has that has turned out?

Notes From France

I am in France with my sister for a week, working out how I might make some part of this film talk of her life.  It is just the two of us in her beautiful house on the side of mountain in Provence.

She is in very good spirits and physically very well.  Her short term memory is very bad but some things do still stick for a few hours and very important things remain for over a week. 

Longer term memories come and go, usually they are quite blurry and mix into each other.  Her childhood memories of being on a farm while evacuated from London during the war are the strongest and clearest.

She is living a very simple life with a routine in which she is very comfortable. 

She sleeps very well, late until the sun has risen over the mountains at the end of the valley. 

Breakfast takes a while. Toast and tea. Today we ate some Quince jam that we made together yesterday.

Then she might wander around in the garden collecting leaves to feed the neighbour's rabbits, knife in hand to pick flowers, and later take the rubbish down to the bin on the street at the corner of her garden.

Then after lunch she might spend several hours sewing the latest of her incredible patchwork quilts.  This one she says will be huge.

Max, her white cat takes up much of her time demanding to be let in and out of doors (he prefers doors to windows) and asking for food.

During the day at some point if I wasnt here, one of the 3 ladies we have organised to visit her will come and either sit for a tea or take her for a drive or a walk, or to the market and a bar in town for lunch.

Now one of them is going to move into a little self-contained flat at one end of the house for the winter at least, after splitting with her husband and selling their house.  So J will no longer be living alone which is great news. 

So I come into this peaceful and ordered world with my camera and my ideas and it feels slightly ridiculous to bring it into the situation and point it in her direction, even though she doesn't object to what I am doing.

Meanwhile, I make as tasty meals as I can to give her a change from the slightly bland meals-on-wheels food they bring her. We go for walks and drives and have picnics on the side of mountains with chicken sandwiches. We sit and look at the view and listen to the wind and birds for ages at a time.

When we are together I try to be as calm and slow as possible. She is like a mirror; highly sensitive to my mood and behaviour.

We can talk about anything together, and she is often very funny and insightful as long as we stick to things in the immediate present. In general I don't try to talk about very complicated matters.

Its hard to know how this film might start or stop. Where it will begin, what a single scene will feel like. I suppose its because I am used to being able to build an image of a film as I think about in advance it but with this I dont know how it will be. Im probably used to being too controlling with my ideas and am keen to keep this one open ended. So on this trip I am pushing myself to take samples of different moments of the day without attempting to answer any big questions.

Creating Worlds

Very exciting methodology Martin and it'll be fascinating to see how you create what's at heart a documentary that has it's own parameters and own specific world. People are used to going into altered states in other genres, especially film and animation, but documentary, due in part to its focus on real experiences, and in part due to the innate conservatism of the genre, tends to shy away from such an approach. Much to its loss, in my opinion.

SPECAL CARE / SPECAL SENSE

Reading 'Contented Dementia' by Oliver James, I was very impressed by his description of the SPECAL approach to the care of people suffering from dementia, developed by his mother in law.  The main idea is not to ask questions of and never to contradict someone with dementia. The point is that their emotional reality is as real and intense as any normal healthy person, its just that it is continually undermined by a lack of information about their present situation, therefore they need help to live the present through what they do still retain from the past.

p40

Penny learned that you cannot succeed with someone with dementia unless you protect them from all the disastrous experiential roads down which they can so easily travel.

p37

"Pennys great insight was that building upon a real memory is completely different from the encouragement of a delusion... Penny's unique clinical innovation was to spot the benign potential of systematically supporting the re-experience of long term memories."

The result of these perceptions is a very thorough care approach which makes a lot of sense while requiring a complete switch in how one relates to another person.  Might it be possible for a film to demand the same switch in the mind of the viewer?

Dementia stories

Reading the Guardian this morning I saw the following article about the American Brooke Astor who was taken advantage of by her son when she was vulnerable through dementia.

http://www.guardian.co.uk/world/2009/oct/09/brooke-astor-son-found-guilty

It'll be interesting to see the degree of self empowerment of those with dementia as the above article is the only type I tend to come across on the subject.

Lists of Reference Works and Research Targets

Inspiration:
Click Here for a growing list of books, films and artworks collected as reference and inspiration


Research Targets:
Click Here for a list of people and institutions I would like to meet


Please add further ideas in the comments section or add directly to the documents if you have access

Some background to the grant and the those involved in this project

I made a set of 3 Minute Wonders for Yipp films at the start of this year.  A few months later Patrick Collerton who runs Yipp suggested I pitch for an Grant that the Northern Lights Film Festival was awarding in collaboration with the Tynside Cinema and the AV Festival, the money coming originally from an experimental funding project called Missions Models Money. (MMM). He originally set the festival up with Mark and has now stepped back to let Lisa Laws run it.  I sent in a proposal for a project about memory and memory loss, and some examples of my previous work and a week later got a call from Lisa wanting to discuss the idea.

It turns out they split the grant in three and that I had been chosen to work with the Northern Lights and Tynside third.  Its a completely new idea so I went up to Newcastle from London where live to try to work it out with Lisa and Mark.  They were wonderfully supportive and open about the whole venture. They explained that they were looking for an artist who would be willing to develop an idea in an open and collaborative way, their principle role being to enable and coordinate encounters, meetings and conversations, between myself and people/institutions who seem relevant to the project, while simultaneously looking into alternative distribution ideas for whatever I ended up making.  They would also financially support my travel and working costs for the four month research/shooting period leading up to the NL festival in March.  
This blog is intended to be the pool for everything that comes out of that first meeting.

It is for...

My feeling is that I must start from what I know, and what is closest to me.  In this case it means starting with the experiences of my sister J who is in the early to mid stages of Alzheimer's. Part of the reason for wanting to make this film is to be able to spend as much time as possible with her in the coming months/years.  Whether in the end I will be able to convert this time spent with her into some form of representation that J, myself and the rest of my family would be happy to have presented to the family, remains to be seen.  However I think it is interesting when artists who work in documentary attempt to work with people they are close to, be they family or friends, because of the way that the stakes are raised when it comes to being accountable and responsible for what is shown.  I have been quite closely involved with the way my wife, Leonie has been photographing her mother's world for the past 2 years, and have been fascinated by how she has had to discuss and negotiate every aspect of the public showing of the work.


In answer to your question Patrick, I hope that the film will oscillate between intensely personal, emotionally distilled moments from my time in France with J, and more objective scenes from my explorations into the scientific and social research being carried out around the problem of Alzheimer's.   I hope an audience will be drawn in by the way I represent J's situation and will perhaps start to be able to see the world through her eyes, and will want to learn more. At the same time I would like the film to repeatedly switch to the macro scale and depict the magnitude of the problem at hand and some of the new discoveries that are being made in the clinical and care field.  I am also interested to juxtapose J's situation with that of people less fortunate in their surroundings, but visiting some state run institutions which can't afford or don't know how to offer the person-centered care being developed and taught by organisations like SPECAL. Perhaps I am wanting to do too much, but I intend to look in all three directions in parallel during this research phase, then condense the material as the film starts to reveal itself.

Who's it for?

Hi Martin

There's many good intentions to your film.

I'm interested in how you intend something so personal and emotional to appeal to a wide audience such as you've outlined with your intentions with the Welcome Trust. On the one hand you want to make a film that's a very personal journey into the emotional worlds of those who are losing or have lost their memory and on the other marry it with science to explain to everyone, I assume, what's going on with memory. How do you intend to do this?

Also, do you intend to make a family film, with your sister and featuring your dad and grandmother, or are you going to explore what goes on with a complete stranger?

I really like the emotional reality of what you propose and am intrigued as to who you talk to next.

Intentions Part 4 - FUNDING/ALTERNATIVE DISTRIBUTION

I hope the film will be interesting of some practical use for organisations working with dementia such as the Institute for Aging and Health and The Wellcome Trust.

With my film Possessed I have found it has proven to be a very interesting tool for stimulating debate around the issue of obsessive-compulsive hoarding and has become a first point of call for those wanting to learn about the subject. Since I made it freely available on the Internet it has been watched nearly 100k times and is embedded in the homepage of most websites dedicated to the subject.  It has also had good mileage on the international festival circuit, recently being screened at the Kos International Health Film Festival.  I am currently more interested in these alternative ways of films being shown than traditional UK TV route which I think is very closed to ideas in its current state.
.

Intentions Part 3 - WHY MAKE A FILM ABOUT MEMORY LOSS?

I am interested in the idea that for many people in the western world the idea of what old age entails is changing.  It is less and less experienced as a period of gentle retirement followed by a swift end, more often a protracted decent into oblivion, a process opposite but almost perfectly symmetrical to childhood.

It seems people are realising that this eventuality should be fully embraced and planned for, not left to the state or other family members to cope with.  Particularly since families rarely care for their elderly relatives in their own homes, people in the west are going to have to start to make active provision for their last years if they want to die with dignity, without resolving to a one-way ticket to Switzerland, which shouldn't be necessary if unbearable pain is not an issue.

Having grown up with those around me losing their past has made me acutely aware of the fragility of consciousness and of our fortune in being able to appreciate the present moment in a state of full awareness.  At the same time I think I am as afraid as anyone else to contemplate the disintegration of my own consciousness, and I see this fear as as good a reason as any to embark on a journey that may or may not result in a film.  

I hope to create a film which shifts into the un-logic of a mind left with an unreliable memory, dependent on the stimulus of the near present.  I want to find a way for the film to enter into the immediacy of my sister's world, the mundane yet beautiful time in her garden, her conversations with her cat, the observing of the weather which she can never compare day by day, the mountains, the distant and blurry childhood memories that merge into each other with every passing year, the sense of safety to be found in the routine of pills and meals, the taking of rubbish to the bins, the picking of leaves for the neighbor's rabbits.

In the meantime, I want to intersperse my research into the science of the mind, inter-cutting fragments of scientific information from my searches for facts.  What is memory? What do scientists understand is happening to my sister's mind? And my father and grandmother's minds? Will I too lose my reason? What might I do to protect what I have?

Brain tests, brain scans, brain damage. Language. Images. Behavior.  Why do we forget things in reverse?  Is there a cure to forgetting on the horizon or is that the stuff of science fiction? Is the slide into unconsciousness the most natural way to die? Should Jacqueline my sister bother to take her pills? Is there any hope?

Although my sister Jacqueline is the point of orientation for me at the moment, the person through which I can understand this issue more intensely than anyone else, it may be that she does not feature directly in whatever it is I eventually produce, or am I only writing this because I am afraid of the difficult ethical questions making such a personal film is likely to throw up.
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Intentions Part 2 - MY EXPERIENCES OF MEMORY LOSS

I have grown up watching close family members lose their memories during nearly all of my conscious life.  I have witnessed first my Grandmother on my mother's side, then my father and now my half sister gradually slipping away while their bodies and personalities remain long after everything they experienced in life has been lost to them, their lives reduced to the well cared for present.

My age-

9 - 14                          Grandmother's dementia

15 - 25                        Father's dementia

27 - 32...                     Sister Jacqueline's ongoing Alzheimer’s

I was born when my father was 70.  My grandmother (mother's mother) was 72.  When her husband died she moved into a bungalow in our village, and gradually began to lose her memory.  She moved to an old people's home in the next village where I remember her sitting by the window all day, blissfully content re-reading the same book, watching the cows going back and forth to be milked, and sipping her sherry and smoking Moore Menthols in the bath.

When she died it was soon Dad's turn to forget.  I remember my mother desperately trying to save her plants from his secateurs when he decided to hack up the garden in the wrong season.  When I was 17 he forgot who I was for the first time.  As he became older and more confused his wonderfully kind nature became one of the hardest thing to cope with. His desire to be helpful meant that he would endlessly try to get up to see if he could be of assistance when he could no longer walk safely.   Trying to persuade him to sit and rest was very difficult.  My mother and the care team she assembled around her were unbelievably patient.

He died aged of 95 and a couple of years later my half sister Jacqueline was suddenly diagnosed with Alzheimer’s at the age of 62.  For several years I found it strange the way she would repeat the same story over and over again while seemingly having complete control of everything else,  but it wasn’t until a friend dragged her to a specialist that it became clear that something was wrong.  Now she lives alone in the mountains in Provence, dependent on helpers, overfeeding her beloved cat Max, churning out exquisite patchwork quilts for the people who help look after her, afraid to walk beyond the dustbins at the end of her garden in case she might get lost.  


She was a highly intelligent and independent woman, a high powered interpreter living in Paris. She introduced me to many books and got me thinking about many things. My brother and I both owe her a lot.

Intentions Part 1 - GENTLE OBLIVION

Is it possible that the loss of memory can in some way be a kind of blessing?  Or to put it differently, does dementia have to be hell?


A person living without the support of recent memory is constantly on a knife edge of acute vulnerability, at risk of spiraling into confusion and disorientation at any moment as the world makes demands that the mind has no way of responding to.


But where there is an absence of memory there can also be an absence of practical worries about the mundane details of life, a liberation from painful memories and an inability to fear the future.  The result is an existential state floating on feelings in which everything is in flux, but which with help and the right environment can be guided to remain in some kind of balance.  


There is an interesting new theory for caring for those with dementia called Specal, designed by a 60 year old grandmother Penny Garner who has helped write a book called Contented Dementia. Her idea is a simple one, that people with dementia can often still reason, its just they don't have the facts available, yet meanwhile their emotions remain intense and very real, as do their sensations.  The idea of her care approach is to avoid correcting the factual inaccuracies of those with dementia, and instead focus on their positive emotions as a way of getting through the day.  "Their fuel is feelings,” she explains “It’s abundantly clear that feelings are more important than facts to the person with dementia.”


For Tarkovsky, the world of feelings is the only reality of any significance and with his films he attempted to conjure up something of this world.  He laid down the gauntlet that film is an art form that should aspire to penetrate and express this other world, and to watch his films is willfully to subject oneself to a deeply disorientating experience.  


From the following statement of intent I propose to embark on an experimental documentary project in which I will explore my sister's experience of living with Alzheimer's.  Her life has become like a never-ending Tarkovsky film, in which memories surface and fade, overlapping freely with the intensely perceived present.   I want to avoid the conventional conservative documentary position of the 'sane' outsider, and using the logic of the Specal approach, create a film which drifts in and with the fluid emotional landscape of my sister's world.