Remembering My Hat

14th November 2014

CABS/CPA seminar: Researching the lives of people living with dementia – Innovative methodologies

Filed under: Uncategorized — rememberingmyhat @ 13:26

 My usual erratic and partial notes from a seminar. Comments in square brackets are my own responses

Richard Ward, Univ of Stirling

Negotiating (the) neighbourhood: Doing research into the social and physical environment with carers of people with dementia.

Literature on space/place and dementia tends to focus on the physical aspects of environment (adaptions etc) rather than the social aspects of environment.

Asked participants (carers and ex-carers of PWD) to draw/write social networks.

Many were reluctant to do so – literacy difficulties? [also possibly emotional difficulty in articulating and distinguishing closeness of relationship?] Lots of people produced lists under different categories ‘family’, ‘friends’, ‘age concern’, ‘church’. Some people used different colours. Many put the PWD in the centre of their page.

Hardly any social workers, psychiatrists, CPNs etc were featured. Could be because they were not seen as part of social network or could be because people have less contact with e.g SWers and CPNs than they used to.

Then (if mobile enough) did walking interviews – ‘show us the places that matter to you’. Gave disposable cameras as did. Lots of literature on walking interviews – much more gaps/silence/ time to mull over things. Perfect method for how people experience environments.

One common type of walk was ‘the neighbourhood on display’ – kind of tourguide-tourist relationship. Local beauty spots – held significance even though weren’t part of daily lives. Often open and green spaces. Putting their neighbourhood on display to outsiders (the interviewers).

Another common type was ‘the everyday’ walk. Talked about significance in lives and also local reputation of places

Walking seemed to provoke emplaced memories – things that would be unlikely to come up in an interview in their sitting room.

Places that seemed unremarkable ‘it just looks like a field to anybody else’ football field. Somewhere this carer and PWD had walked for many years as a shortcut to family member’s home. Helped PWD to access memories, and hence significant to carer too as one of the places where they communicate meaningfully.

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(cc) Remi Kaupp

Safe spaces within a neighbourhood – coffee shops and hairdressers especially. Where people wouldn’t stigmatise PWD

The significance of weak ties [as ever!]. People saying ‘hello’ on the street to PWD makes it feel safer and more familiar, even though they don’t remember them or their names. People in shops sending PWD back to car park when wandered off from partner.

Shrinking world. Partly because carers don’t want to tell e.g. less close friends about someone’s dementia, so avoid contact.

Meaning of home changed –feeling imprisoned and trapped. Helps to explain that the wider neighbourhood existed as places of escape, or even just the promise of place (where people didn’t actually visit them except when showing the interviewer around).

It’s clear there were changes over time – next project involves longitudinal aspect.

Conclusions:

  • Separating social environment form physical environment isn’t helpful – they are too intertwined
  • Intangible, imagined and remembered qualities of place are really important
  • ‘Dementia time’ and dementia-specific experiences of place and space.

These walking interview methods could also be very productively used by care providers, not just researchers.

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