Remembering My Hat

13th July 2012

British Society of Gerontology conference 2012: Part 3 Notes

Second Plenary

Murna Downs

University of Bradford

From invisible patient to citizen and activist: Dementia comes of age

Giving a plenary as a coming of age marker for an academic lifecourse?

Don’t know as much about user-involvement in dementia care as we do about stigma.

New policy statement [missed source – something govtmental] 9 ‘I’ statements which indicate good quality care ‘I can enjoy life’ ‘I was diagnosed early’ etc. Alzheimer’s Soc now using a similar series of I statements

Usual thorny issues of user-involvement:

  • Who is involved?
  • Serving whose agenda?
  • At what pace are we working? Going too fast is a problem
  • With what resources?
  • With what adaptions and accommodations? Going to people’s homes and day centres really important. Not privileging the verbal and articulate people.
  • Real or tokenistic?

Dementia is progressive – how long through the journey do people stay with you [also the case for e.g. M.S. and old age]

If you’re a dementia activist in care, do you end up being put on anti-psychotic drugs to stop you being a nuisance?

Earlier diagnosis of dementia means that there are people in circulation with dementia who are ‘just like us’ researchers. This creates a danger where we think we are including/consulting PWD when actually it’s only the most able. Maybe Arts kinds of activities are a better way of involving people with more advanced dementia than membership of advisory groups and working groups. [Maybe arts kinds of activities are better way of involving all sorts of non-verbal, MC semi-academic people]

Chris Phillipson: danger that bids to NIHR and ESRC scheme will be a muddled mix of bio-medical model and critical perspectives (because the field is like that).


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