Coding interviews and identity: people with Alzheimer’s -2

Yesterday we left Celia thinking there was something else going on after her interviews with caregivers of people with Alzheimer’s disease. Something else was going on with me too, as my head was awash with images and sounds from ‘Brief Encounter.’ Celia Johnson was great, as was Trevor Howard, however I find the accents so awful, but love the way it told the story. A great archive review can be found here. If you want to know more have a look at these links.

So, back to our researcher, Celia. She states how uneasy and perplexed she was after the first interview and two more interviews followed fairly swiftly. After these she began coding, writing notes and impressions in the side margins of her transcripts, her unit of coding being each line.  Celia goes on to state that categories emerged but doesn’t really tell us how but it was at this point that she realised that her expected category about the ‘profoundness of placement of the Alzheimer’s person was not there with the richness she anticipated. The issue of decision making was not so very paramount in these interviews.’

Celia found herself drawn to other categories and says that after reading and re-reading the interviews she could ‘literally see the disquiet she had earlier experienced.’ It was how the interviewees commented that by the time of making a decision around care homes the person they once knew as husband, wife, mother or father ‘was gone.’ They were ‘strangers,’ and as one interviewee said ” M died a long time ago.” She reflected on the comments each had said; “different,” “gone,” “I don’t know but I know he’s not the same person!”

Identity loss was the central theme from the data

It was during these interviews that Celia’s focus changed from decision making to identity loss. Her key questions now included: ‘Tell em about your …before the onset of the disease; what was he/she like?’ ‘What were the first changes you noticed?’

She describes how she sat for ‘days on end’ with the transcribed interviews spread out before me, ‘absorbing them into my consciousness and letting them float about. I wrote memos on whatever struck my fancy, or as one professor called them, my “flights of fancy.” Sometimes writing several pages, at other times just a paragraph, recording whatever came into her head. Notes of all shapes and sizes began to pile up of non-linear thoughts and questions around identity:

• how is identity perceived?
• what constitutes identity to the average person?
• why, if the person was ‘gone’ did the relatives hang on to the caregiving experience for so long?

Instead of making notes one day Celia decided to wade through the pile and placed them into developing categories:

• silent partner, helper, and neighbours was abstracted to social relations
• memory, clock and rituals were placed in temporality

Slowly, four major themes emerged around the identity loss process;

1. Social relations
2. Reciprocity
3. Moral obligation
4. Temporality

Celia describes how she set aside her other notes, talked to people working with Alzheimer’s disease and did more interviews; coding and writing memos as she went along.

“But most of all, I walked; I sat; I daydreamed.”

In an experience or experiencing?

Something is proving very difficult for me to pin down at the moment. Am I experiencing  or am I having an experience? Don’t ask me why this question matters. Or, why on earth it entered my head. All I can say in response is that it has.

Dennis Atkinson describes experiencing as a temporal process, a series of temporal flows; whilst experience is a more substantial entity. An experience is something that happened, a reduction of the flow of experiencing temporalities to the form of a series of signifiers. So, when experiencing I’m having temporal interactions with my environment, my landscape, my being. I’ve read that some individuals with depression experience changes in their temporal experiences of time. The flow of being in an experience, absorbed, tends to change our perception of time. On the one hand time goes more slowly yet it appears to whoosh by unnoticed.

Husserl appears to have considered temporalising and here’s a great paper considering temporalising consciousness. I’m going to need to consider this more, however, the stand out words at the moment are: “The present is not simple. It is fundamentally complex.” So, temporal flows abound during the process of experiencing, perhaps chaotically, disorganised, numerous and jumping back and forwards in time. I can somehow go with this. It creates an image of neural networks sparking reactions multidimensionally, multilayered and in all shades of colour. I feel that experiencing and experience are both simultaneous and asynchronous.

Atkinson states that there’s a reduction in temporal flows when experiencing transforms to experience. Perhaps this is our cognitive filing system coming into the foreground, anchoring meaningful temporal flows with our existing representations of subjects and establishing new ones where the temporal flow is unknown, unrecognised. I can potentially see where an overload of temporal flows which cannot be reduced and linked to signifiers might be almost ‘dangerous.’ I can also see where this idea of disrupting the flow of experiencing can lead to learning through possible disorientation, and, as Atkinson states disjunctive temporality, ruptures, punctures and disturbances in our experience of a subject or topic.

I don’t know enough about education, teaching or learning. All I know is that my temporal flow take me to Gert Biesta’s discussion of learning as a reaction to a disturbance:

“If we look at learning in this way, we can say that someone has learned something not when she is able to copy and reproduce what already existed, but when she responds to what is unfamiliar, what is different, what challenges, irritates, or even disturbs. Here learning becomes a creation or an invention, a process of bringing something new into the world: one’s own, unique response…. Instead of seeing learning as an attempt to acquire, to master, to internalize, or any other possessive metaphors we can think of, we might see learning as a reaction to a disturbance, as an attempt to reorganize and reintegrate as a result of disintegration” 

Is learning a series of temporal flows (experiencing) which have been reduced to a series of signifiers? Or is it because some temporal flows are themselves forms of signifiers which are unknown, and therefore result in reorganisation of an experience?

Perhaps this leaves me with more questions than answers. 

Dennis Atkinson: Art, equality and learning. Pedagogies against the state

Gert Biesta: Beyond learning. Democratic education for a human future