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.”

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