Thursday, October 27, 2011

This week we've been in the rehearsal room, scripting, story-boarding and developing the three parts of the trilogy making up 'Captain Ko and the Planet of Rice' (still our working title but we think it will stick!).
For Part One, we've been thinking along these lines...
For Part Two, we've been thinking along these lines...
It has been great having Caroline on sound and Susanne on video, in the room with us. Even Adrian, our great set designer, has been contributing from the other side of the Ocean (and then some!).

Tuesday, October 25, 2011

Dr. Mario Parra

Mario’s job is to develop paradigms/ tests / tasks that may be able to detect dementia in the very early - pre-clinical stages. Before the disease’s onset actually begins. Amongst many other things, a part of Dr. Parra’s research, alongside Sergio Della Sala and Rob Logie, is a fascinating attempt to identify a particular diagnostic test that is unique to AD: binding. This is the ability not only to remember colour or shape, but to bind them together. Though anything conclusive is still a long way away, it was thrilling to see Mario explain how this kind of medical research could, one day, have a tangible effect on when we are able to diagnose AD, and therefore how early we are able to begin treatment.

Dr. Parra made the interesting point though, that (at present at least), this treatment, this rehabilitation, isn’t about fixing weakened systems. It’s about strengthening alternative systems to help cope with the weakness.

Again, the idea of ‘distraction’ came up. That an interruption to a process can derail a procedure. Someone with AD could, for example, be setting up for tea, get a phone call and then, having hung up, be completely unaware of why the crockery is out on the table, and clear it all up.

Linked to this, he told us of ‘The Breakfast Task’ where a patient is asked to prepare items for breakfast - cook eggs, sausages etc, for certain amounts of time each. Although, as he pointed out, there are a great many processes involved in this task and therefore can only really be used in conjunction with many other ‘pure’ tasks that focus on one aspect of cognition at a time, one of the most important is the ability to judge the passing of time (either with or without access to visual stimuli like clocks, timers, even the outdoors). This ability is greatly affected by AD and, as a result, patients’ biological clocks can be altered a great deal. It becomes difficult to know whether lunch was an hour ago, five minutes ago or even whether it’s time for breakfast.

This idea of being temporally disorientated, even within a domestic space, is, for us, a fascinating side effect of the memory problems associated with AD.

If Mario could address one issue of public engagement he would: Encourage people to try to get as early a diagnosis as possible. Don’t assume that decline in things is necessarily natural and normal, get it checked by a GP. The earlier they can diagnose dementia, the more effective the treatment can be.

and the image he described to represent AD was the logo he designed for the Alzheimer’s society of Columbia: a garden with some flowers in colour and others in black and white. It was his job, he said, to try to keep them in colour for as long as possible.

Kirsty Jardine

Kirsty works at the Alzheimers Society Scotland, helping to provide care, support and information to carers and people with the disease across the country. Her main job is to raise awareness.

Many people who are experiencing the first signs tend to cover it up - this is because as soon as certain cognitive functions begin to break down, especially memory, it’s a bit like losing your sense of time and place and this is firmly connected with identity.

Dementia is the disease that is most feared among old people - more than cancer or heart failures.

The main thing she has noticed over the last ten years is the increase in the number of old people living alone. The change in the way families live, fewer families live together across generations, families break down, there are a lot more separations, more and more people move abroad, away from the older members of the family. But also many people, when they retire, choose to move to the countryside, more isolated parts of the country - this causes complications in getting the care to them.

If Kirsty could engage the public with something it would be the idea that noone should have to feel isolated with Dementia. This goes from having the confidence to get an early diagnosis, to having proper provision of care.

Also: Dementia doesn’t mean you can’t learn new skills. In fact, Kirstly says that the more creative side of the brain is still very functional and may even be developed. You can live well with Dementia - if the support is there.

The image she described was, appropriately, the Alzheimers Society Scotland logo, an image of three individuals, embracing each other in support. It describes, she says, the way in which AD can both be incredibly isolating but also, with the right support, bring people together.

‘A life like Mr Magoo’ : Talking to Dr. John Starr.

Dr. Starr’s image to describe the experience of AD was Mr. Magoo. He described the extraordinary way in which a person with AD can (he stressed, not always, but often) go through life in benign obliviousness to the extreme amount of work going on around them to keep things ticking over. The shopping has been done. The clothes have been washed. The bills have been paid. It’s like, he said, the way Mr. Magoo can drive through town with his eyes closed, be picked up by cranes, dodged by vans, hurled around by ramps and rollercoasters and remain completely, happily, unaware of the danger he’s in!

This unawareness, though sometimes a blessing for the person with dementia, can be one of the hardest things for carers to deal with, as no matter how many manholes they cover, or ACME high voltage cables they cut, there is never any respite and no real recognition of the efforts they go to.

Dr. Starr’s outlook was optimistic. He described the idea of wellbeing as split into two types, ‘living well’ (the greek ‘eudomia’) and ‘living contentedly’ (the Greek 'atoraxia'). People with AD were, as a rule, if not experiencing the first, then largely experiencing the second. It is much more often the people who care for the person with AD, or the person visiting, who is aware of the disease.

If Dr. Starr could address one public misconception he would eradicate the phrase ‘Dementia Sufferer’ and insist on ‘Person with dementia’ (a distinction already enforced in all literature about any illness). The distinction is crucial as a matter of maintaining, for the carer as much as the person with the disease, a sense of personhood. They are person first, and someone with AD very much second.

'Now what do I do with you' : Notes on meeting Sarah and Richard

Meeting with Sarah, a woman with in the early stages of AD, and her husband Richard, was fascinating and unusual, because Sarah is in the relatively rare position of being able to reflect on her own condition. The main thing for Sarah, an otherwise very sociable person with a big and loving family, was forgetting people’s names. Knowing that she knows them - sometimes people she has knows for forty years or more - but not knowing who they were. This also affects her use of the phone, which she has now given up altogether.

Sarah told us of the time recently when she had packed a suitcase for a holiday, only to realise when when they arrived that all the clothes she’d packed were completely inappropriate.

She told us (with good humour), of looking blankly at the washing machine, thinking ‘now, what do I do with you?’.

We asked Sarah if there was a particular moment she associates with realising she had AD and she told us of a time (really, she said, the last time) she prepared a complicated meal and put the wrong thing in the mince. It wasn’t very nice.

Sometimes, Sarah said, she forgets to have lunch and is worried that, if she weren’t reminded, she’d forget to eat altogether.

“The Queen can never get Alzheimers Disease” : Speaking with Dr. Jennifer Foley.

'Playing Sudoku doesn't help'. The popular conception that AD does not appear in brains that haven’t been 'trained up' is, according to Dr. Foley, a misunderstanding that can, far from helping, lead to added stress as people try to learn new things they don’t enjoy rather than focussing on things they already do.

We spoke to Dr. Foley about the initial stages of AD and noticeable things that start to happen. Getting lost while driving, forgetting routes and maps, not grooming quite so well, putting the wrong things in the wrong places (like a can opener in the fridge).

One symptom that felt especially interesting to us was the changing ability to manage household tasks, particularly if a process that requires a number of stages is interrupted. It is this interruption of a physical action, when someone is required to hold onto previous stages in a process, that can lead to confusion. In this way, a physical process like laying a table for a dinner party or preparing a meal, can, when disrupted by another task, become ruptured.

This moment, she described as a ‘blankness’. This seemed an incredibly apt description to us of the point in time, sometimes only a few seconds, where the chain of a sentence or an action is broken, and there is a momentary disorientation.

Another interesting point of discussion was the idea of ‘prospective memory’, which can also be affected in the early stages of AD. This is the ability to remember future tasks (‘remember to call X back later this afternoon’). The separation here between the cognitive processing of the future and the past is incredibly difficult for researchers to disentangle. To what extent is this prospective memory - remembering to do something in five minutes time - the same process as remembering something that happened five minutes ago?

Finally, Dr. Foley told us (with tongue firmly in cheek), that technically, the queen can never be diagnosed with dementia, because a crucial part of the diagnosis is a change in your ability to look after yourself which, as it’s all done for her, will never be detectable at Buckingham Palace.

A trip to Edinburgh

This week we have been in Edinburgh spending time with the neurology department of Edinburgh University, talking about dementia and Alzheimers Disease (AD). Amongst a more general discussion, we asked each person we spoke to to explain both one image or metaphor that, for them, described an aspect of AD, and to tell us one thing about AD that they wished was better understood.

Below (possibly displayed above) are some thoughts from the discussions we had.