Listening to your eyes

2010-06-28T09:51:00.000-07:00

This blog was set up as part of Action Research, funded by Longhouse, the bursary has now ended and I would like to thank all the people that have helped me through this period of research. If you want to keep up to date on what I am doing please visit my website

www.katieshipley.com.

I'm going to end my blog with a short reflective essay I wrote as part of my course 'Developing Art for Health.'

Reflection

‘Scientific discovery is, and always will be, an inherently clumsy matter as scientists attempt to fit the round peg of humanity into the square hole of objectivity.’

I sit with a woman showing her different objects that are taken from a box, we engage in very light conversation where I’m asking her questions, most of which she understands but some confuse her. There is a pause in conversation, she plucks at her cardigan and tells me, for the fifth time, that she used to make her own clothes. I react with surprise, as I did the previous four times, then I think to myself ‘how could I ask this woman to evaluate this project?’ For a start she probably doesn’t even realise that this is a project, although it was explained to her when I walked in the room and we were introduced. There is every chance that she thinks I’m simply there to talk, or that I’m a member of staff at the home, or even a relative. If I asked her if she had enjoyed talking about the objects, there is a high chance that she would turn around and ask ‘what objects?’ I certainly couldn’t ask her to rate out of ten how she felt before, during and after our conversation.

What I could do is comment on how she smiled whilst we talked and she reminisced about the past. I could tell you about how she dressed in her Sunday best to come to the table to talk to me and how she kept a keen eye on her mug of coffee, grabbing it quickly when she thought others might take it away. I could write about how she was much more focussed when we came in and delivered a Christmas Pomander activity, much more able to follow the conversation that was related to the activity she was doing and much happier when she left the table knowing that she had accomplished something.

What I don’t know is how much she smiles on the days that I don’t come in to talk. I don’t know how often she talks about making her own clothes on every other day and I don’t know what she is like after I’ve gone. Is she happier after an activity, or conversation, or is she happier after sitting quietly for a couple of hours? I am unable to compare her behaviour in the way that care home staff or regular visitors could. It would be interesting to see the results of Dementia Care Mapping with this woman. Comparing the amount of times she smiles when she is discussing objects from the museum to when she is sat watching television, or eating her lunch. Then we could see what effect, if any, that the activities are having on her and if it is improving her well-being in the way that we had hoped. By observation we could do this without confusing her with questions that she might not understand, without giving her a task that she may be in fear of failing. The results probably will not tell the scientists with accuracy that arts and health projects definitely help all people with dementia, but we still will have learnt something and more importantly the woman will end the project with the same positive attitude that I see every time someone takes the time to talk to her.

*Shenk, D. (2003, p.245) The Forgetting London, Flamingo.

Life History

2010-03-30T10:40:00.000-07:00

I went to the life history training today. Again, as with all training I go to, it was not what I expected and yet it was still really interesting.

The course firstly focused on how important it is to use life history within care homes of any kind, though more specifically in those that care for people that live with dementia. There were lots of small exercises to get us thinking about what memories we have, how we use those memories and what we keep in order to help us remember.

Truly knowing the people that you are working with and caring for, knowing their histories, their families, relationships and jobs, as well as good and bad experiences helps you to understand them more. It makes sense of the things they might be saying or doing and equips you with the tools to make them more comfortable.

'The goal of person centered care is to promote well-being.'

Again the name Tom Kitwood came up so I'm going to have to get myself a book!

As with the dementia awareness training course I heard a lot of scary facts about care homes that makes me want to do a Gerry Robinson. Although I do feel better that I now have new skills and ideas to take into homes when we are doing our activities.

If I write in yellow performance

2010-03-30T10:25:00.001-07:00

On Monday I did a performance that I've been meaning to for a couple of months and finally got the opportunity. It is based on a piece I have posted about before 'If I write in yellow III' which illustrates the a desperate attempt to communicate with a loved one through writing in yellow ink on the inside of a window.

The performance took place at in the AirSpace Gallery window and will only be up for a few days. I was persuaded to film the performance although I'm not sure I'll do anything with it.

I'm really pleased with how the piece turned out and I enjoyed that the exercise forced me to pay more attention to my surroundings.

\"home\" talk at AirSpace

2010-03-30T09:57:00.001-07:00

Last weekend I went to a talk at AirSpace Gallery in Stoke on Trent. It was a talk about the exhibition that has just ended \"home\" and included the curator Rachel Marsden, two artists from the show Chinmoyi Patel and Kashif Nadim Chaudry and David Schischka-Thomas the Senior Curator at the New Art Exchange.

The talk was mostly focused on the idea of 'home' and what that is. Though the most interesting part of the discussion for me was about Chinmoyi Patel's art work. Her piece for the exhibition 'B.P. & S.P.' is a pair of head phones hanging on an orange wall. When you listen to the audio you hear, as she described it, her grandmother telling stories that she used to tell Chinmoyi as a child. Whilst these stories are told Chinmoyi speaks about the memories that these stories evoke.

'B.P. & S.P. specifically examines how memories are formed during childhood then remembered as adults. It is about retaining a certain feeling or emotion, rather than the explicit details and particulars. Patel is fascinated to see how one's mind then tries to fill in these blanks - reality merges with fantasy to form a rich and multi-layered narrative.'

This reminds me of work that I was creating about a year ago, where I was discussing the labyrinth of memories that builds up in our mind through our lifetime, one memory triggering a seemingly unrelated one causing a chain of memories. It also hints at the idea that two people can remember the same event in such a way that it sounds like two completely different events.

Developing Arts for Health

2010-03-24T12:51:00.000-07:00

I am currently studying the Developing Arts for Health course at Staffordshire University, it's not quite what I was expecting but it is proving to be quite interesting.

The course has helped me to better understand the project that we are doing at the dementia care home in Stoke on Trent and is making me a lot more passionate about the project. I'm using it as a case study for the research I'm doing as part of the course.

I've also had a look at the Dementia Studies courses that Stirling and Bradford Universities do, these look really interesting, especially this module at Stirling:

'Working with people with dementia: This module investigates different approaches used when working with people with dementia, focusing strongly on the role of communication. The roles of life story work and the arts, as well as design and technology in dementia care, are explored.'

I'll be doing some Life History training in work next week, so it will be interesting to see how that goes.

Yellow Wallpaper

2010-03-24T12:44:00.000-07:00

With this poster I am attempting to disguise the changes that have been made to the city of Stoke on Trent with wallpaper, a technique used in dementia care homes to prevent residents from entering rooms they are not meant to. By covering doors with wallpaper the doors become almost invisible to the residents, this is a proven technique to avoid unnecessary confusion. This use of disguising is similarly seen with the use of hoarding in city centres, the knocking down and rebuilding of city spaces is masked from the public with huge boards for our own protection.

Yellow is the last colour in the spectrum that a dementia sufferer loses, by using yellow images from the City’s past I am offering a visual memory of a time that many dementia sufferers may still remember, an alternative view to the now constantly changing city that would perhaps confuse those that only remember the times gone by. Alzheimer’s is a regressive disease that takes you back in time through your life, slowly removing the people and places that you know.

The Map: First Attempt

2010-02-03T07:02:00.001-08:00

So I've had a go at putting all of the images that match my research into a map. Take a look to see where each piece of art was created/existed. you can scroll around to find the little camera icons, then click on an icon to see the image. There are some in Wrexham, Stoke-on-Trent and Leek (to the left and right of where the map seems to settle).

View Listening To Your Eyes in a larger map

If I write in yellow III

2010-02-01T11:46:00.000-08:00

If I Write in Yellow III is a list, something that many of us use as an everyday tool, small reminders of what we have to do or things we have to buy. But this list is full of small, seemingly insignificant, things that most of us would take for granted. The list is written on a pane of glass and describes the area seen through and surrounding the glass, as well as events that might happen as the list is written. The artwork becomes a memory, a snippet of a diary in the day of the window, or the person looking through, and exists only temporarily until it is wiped away.

If I Write in Yellow illustrates a desperate attempt to communicate with a loved one. The list, written in yellow ink, becomes a description of life and experience for the sufferer. It visualises attempts to allow a person to remain independent for as long as possible. For the onlooker the list is written backwards, it shows an outsiders view of a relationship between a carer and a sufferer. A relationship that is not understood by many but may only be avoided by a few.

Can Gerry Robinson Fix Dementia Care Homes?

2009-12-18T14:28:00.001-08:00

I missed the first episode but watched the second this week and thought this program was amazing. I went through all emotions I was happy, sad, angry and at the end I cried. I had been told it would be hard for me to watch, as I might relate it to my Grandad, but at the same time I would find it interesting. That was correct. I’m not concerned about my Grandad, I’m really happy with the home that he is in now.
I think it is absolutely amazing that this program is on the TV, serious issues are being raised and dealt with. Issues that I have witnessed first hand and those that I hope never to see. But also examples of what it should be like for residents of care homes, simple things that can make a massive difference.
Earlier on the same day I had been at the dementia care home with work. We were doing one on one sessions making Christmas Pomanders out of oranges, cloves and cinnamon. I had a really nice time and the two residents that I worked with seemed to really enjoy the activity. I feel so much better going in with an activity rather than just relying on my conversation. I don’t know if that is because of my background of delivering art workshops to groups or if it is because I can see the positive effect of an activity much more clearly.

Websites

2009-12-16T14:37:00.000-08:00

Some other websites I have been looking at are:

www.alzheimers.org.uk

www.nhs.uk/Conditions/Alzheimers-disease/Pages/Introduction.aspx

www.alzheimers-research.org.uk/

www.alz.co.uk/

www.alz.org/index.asp

Videos

2009-12-16T14:32:00.002-08:00

I took these videos from David Shenk's website www.aboutalz.org , I think they are a really useful source of information, even if they are a bit dated.

A Message for Patients and their Families

2009-12-16T14:32:00.001-08:00

The Race to the Cure

2009-12-16T14:31:00.003-08:00

An Urgent Epidemic

2009-12-16T14:31:00.001-08:00

What is Alzheimer's Disease?

2009-12-16T14:30:00.001-08:00

technology

2009-12-03T11:32:00.000-08:00

It strikes me that technology is going to become quite a big factor in the world of Alzheimer's. In fact this may already be happening. At some point the people who are suffering are going to be people who are accustomed to using technology. Already the people we talk to at the home were confused by the old fashioned iron that we took in, they remember irons being big white plastic things, much easier to lift and use. Soon/already Alzheimer's sufferers will be used to using computers, for many people this is second nature, turning on a computer and checking your e-mail comes as naturally as cleaning your teeth.

This raises the point that the types of activities people with Alzheimer's are doing will have to evolve with time. Making the activities relevant for the individual is something that is already happening but soon relevant activities might involve playing computer games, texting on a mobile phone or reading the paper on the internet.

My Mother told me about a Jeremy Vine show on radio two, where they were discussing dementia and there was a case study of a woman who was diagnosed but afraid to tell people. To disguise the issue she told a few close friends and family and asked them to remind her by text message about things that she had to do. This meant that she could maintain her independence for a while longer.

Today somebody told me about the ihouse a glimpse into the future. Perhaps this could also help to maintain the independence of people with dementia, in fact it could extend the independence of many different people.

Young People

2009-12-03T11:21:00.000-08:00

Third visit to the dementia care home this week. This time it was a little different, instead of delivering an activity we observed a group of young people from a local school coming in to sing Christmas Carols to the residents. It was amazing how much of a positive effect the presence of the young people had on the residents. They were smiling, humming along and holding hands with the young people. Of course this is not all of the residents, some weren't aware of what was happening.

It reminded me of one of my friends who is a painter, she delivered a project in a residential home, with people who suffer from dementia and some young people from a local school. She had them working in pairs to create paintings and collages. From what I remember she said it was a positive experience for all involved.

It was nice to hear the residents talking about how much they had enjoyed it after the young people had left.

I suppose for most people it is nice to remember your childhood, or some people are thinking about when their children were young, or their own grandchildren. It is also the change of having something different to see and perhaps the music is what is raising their spirits. It could be a combination of all of these things; whatever it is, it brought a completely different atmosphere to the home, if only for a little while.

If I write in yellow

2009-11-21T10:57:00.000-08:00

What would happen..

2009-11-21T10:53:00.000-08:00

I wonder what would happen if I tried to spray everything yellow. If I tried to keep everything for just that little bit longer. Would it work? Or would I still not be able to see anything, as everything would be yellow?

You Are Not Lost

2009-11-09T12:16:00.001-08:00

2009-11-09T12:14:00.000-08:00

Progress?

2009-11-05T11:43:00.000-08:00

I went back to the dementia care home this week. I found it a lot easier than the previous time. We worked with some of the same residents, but I don’t think they remembered. There were new people too, one quite aggressive, but I think I’m kind of used to it because of visiting my Grandfather. My Grandfather isn’t aggressive, but you do get used to all kinds of behaviour because of the people staying at the same home.

I’ve started to read David Shenk’s ‘The Forgetting’, I could quote it all it’s so good. I have read it before, but I didn’t realise until I got about a quarter of the way through. My partner likes to joke that I have mild dementia; I suppose it is not unrealistic to suggest that I could unconsciously be developing the symptoms that I’m reading about. But I have always been easily distracted.

I think I'm Obsessing

2009-11-05T11:42:00.000-08:00

A: ‘I was travelling on the train the other day and spotted a crumpled up chewing gum wrapper that had been left on the table in front of me. I started to think about how far the wrapper had travelled, how long had it been there? Who had sat next to it? What conversations had it witnessed? Who had left it there? I rather poetically began to think that the answers to all of these questions are captured in the folds of the wrapper.

I took the wrapper and put it in my pocket. But then started to feel guilty, that I was somehow preventing it from completing its journey. I decided to put it back. When I got off the train and put my hand in my pocket it was still there, I had forgotten.’

B: ‘But it’s rubbish! Isn’t it?’

When words fail

2009-10-19T13:10:00.001-07:00

What time is it?

2009-10-15T09:51:00.000-07:00

from a friend

2009-10-15T09:47:00.000-07:00

'I was thinking of telling you about my Grandmother. She recently broke her arm. She’s 84 and it has knocked her for six. This has led to her having trouble remembering things, it is most probably not dementia and more likely to be confusion, but my dad was saying she is doing things like eating raw bacon sandwiches as she is forgetting to cook the bacon. Who knows?

It is hard to admit but this is easy for me to deal with as I am so far removed (physically) and not faced with it “out of sight, out of mind”, but I desperately want to put myself in a position where I am with her and want to help her, or just to be with her.

This got me wondered if you could utilise all of these confessions, if you haven’t already. It fascinates me. It’s people letting you in, maybe we don’t think people would be interested in hearing about these experiences.'

Dementia Care Home

2009-10-15T09:39:00.000-07:00

This week I visited a dementia care home in Stoke on Trent, to deliver a Museum Outreach project. This involved introducing a group of residents to a series of objects from the museum and encouraging them to talk about them.
The groups were very small, so it was very much a one to one environment. This proved to be very stimulating for the residents that I spoke to, as they enjoyed meeting someone new and talking about their past. It is encouraging that this type of activity is taking place in care homes.
Other things I noticed about the home were yellow signs on every door, explaining what was behind them with text and imagery. They also had out of bounds room disguised by the doors being decorated the same colour as the walls. This means that the doors mostly go unnoticed by the residents. The office to the home was open so residents were free to walk in and talk to staff. While I was there staff were heard singing with one of the residents who had gone to pay them a visit.
The home manager also showed us some photographs of a tea dance they had organised for all the residents, and those from two other homes, in a neighboring building. The residents had all enjoyed getting dressed for a party, going somewhere new and many remembered dances they had not done for years. This seemed like a really positive activity for the residents to be involved in.

2009-10-12T10:52:00.000-07:00

'My Mum died suddenly...
After she died I realised how much she'd been shielding me from my father's mental state.
He doesn't have Alzheimer's, but he has no short term memory, and is often lost.'

Phillip Toledano www.dayswithmyfather.com

2009-10-12T10:39:00.000-07:00

'I asked the participant to imagine that some of her qualities, personality traits or idiosyncrasies could be transformed into seeds and then asked her to describe what these would be, where she would plant them and what they would blossom into.'

-Jayne Wallace www.digitaljewellery.com

Difficulty performing familiar tasks?

2009-10-12T09:15:00.000-07:00

Difficulty preforming familiar tasks is one of the symptoms or signs of dementia that Joanne Koening Coste mentions in Learning to Speak Alzheimer's. I have used a few quotes from her book to try to get people's attention in unexpected places; this was my first post-it, it hasn't photographed very well.

Mini Mental State test

2009-10-10T08:20:00.000-07:00

• What is today’s date?
• What day of the week is it?
• What is the season?
• What country are we in?
• What town?
• What building are we in?
• What floor are we on?
• I am going to name three objects and I want you to repeat them back to me:
• I would like you to count backwards from one hundred by seven (stop after five answers).
• Can you repeat back to me the three objects I mentioned a moment ago?
• (point at an object in the room) What do we call this?
• (point at another object in the room) And what do we call this?
• Repeat after me: ‘No ifs, ands or buts.’
• Take this piece of paper in your right hand, fold it in half and position it on the floor.
• (Without speaking hold up the piece of paper that has ‘close your eyes’ written on it).
• Please write a sentence for me, it can say anything at all but make it a sentence.
• Here is a diagram of two interesting pentagons. Please copy this drawing onto a piece of paper.

Dementia Training

2009-10-10T08:04:00.000-07:00

I went on a Dementia Training course this week with Stoke on Trent City Council. It wasn't really what I was expecting, as I'm going to be doing work at a dementia care home I thought it might deal with how to behave in certain situations, what to say and what not to say etc... In fact, the trainer explained a lot about the different types of dementia, which was actually really interesting for me.

He mentioned some work that they are doing in Stoke at the moment where they create Life Story Books, encouraging family to bring in images and record stories of a resident's past, these are then put together in Windows Movie Maker and played for a resident during times of stress. They have found that this works really well as a comforting technique.

Worryingly the trainer mentioned a few facts:

40-50% of GPs have no training in diagnosing dementia. Many still using the Mini Mental State test, which is a series of questions I have come across before in my work.

750 000 people have dementia in Britain (thought be be an underestimation as does not include the 18000 that are under 65)

In 2010 that will be 870 000, reaching an estimated 1.2 million by 2050.

Yellow is the last colour in the spectrum that dementia suferers lose.

Learning To Speak Alzheimer's

2009-10-05T12:58:00.000-07:00

As part of my research I've been reading 'Learning To Speak Alzheimer's' by Joanne Koening Coste. Although a lot of the advice is only relevant for those living in America some things she mentions are quite interesting, but the most interesting thing for me has been the reaction I get from other people when they see me reading it. People I have worked with and known for years are suddenly opening up to me about their parents or grandparents, it appears many of us have unspoken worries about relatives suffering from Dementia.

Why am I doing this?

2009-10-05T12:55:00.000-07:00

Through a varied medium I discuss how memories make us who we are, how we analyse and edit our past in our minds, creating a labyrinth of feelings, people and moments in time. I am interested in the idea of memory as identity; with loss of memory comes the loss of ourselves, our life’s path slowly erasing behind us.

The work I am creating is a response to my feelings about memory; how I have witnessed my Grandfather’s attempts to hold on to memories that Alzheimer’s threatens to take away; how I struggle to remember a face that once meant the world to me; how an item, an image or a word can resuscitate an emotion and how I can forget the things that I have loved but am haunted by events that I wish I could take away.