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Co-production, co-design and co-construction of dementia policy


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Dr Shibley Rahman
3 February 2016

Published in: Health & Medicine
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Co-production, co-design and co-construction of dementia policy

  1. 1. Co-production, co-design and co-construction of dementia policy Dr Shibley Rahman 3 February 2016
  2. 2. Power is “the ability to cause or prevent change” (May (1973) Power and Innocence)
  3. 3. 47 million people in the world living with dementia 850000 roughly in the UK
  4. 4. The edge?
  5. 5. My experience as a ‘professional volunteer’
  6. 6. “Our health and social care services cannot afford to allow the insight and other life skills that people using health and social care services possess to continue to go to waste. The only way forward is genuine collaboration – that powerful bringing together on an equal basis of lived experience and professional expertise. This can be challenging for all concerned.” Alison Cameron
  7. 7. Blogpost “Co-production, co-design and co-creation: what is the difference?” by Sean McDougall (November 2012) Co-design: a design is a plan or method for doing something. The person who discovered that rubbing sticks over tinder can make fire was a designer, and the process was the design. Equally, a person who produces architectural drawings for an office block is a designer, and the plans are the design. Co-design, therefore, occurs when more than one person is involved in drawing up a plan for doing something. Co-production: production is what happens when the raw materials needed to do something are brought together and combined to generate something new. Working out what to do is design work; doing it is production.
  8. 8. Co-production was first conceptualised by an academic team led by Elinor Ostrom at Indiana University in the 1970s and described the lack of recognition of service users in service delivery. (source: Realpe and Wallace / Health Foundation, 2010 ht: Alison Cameron.)
  9. 9. Birthday party analogy
  10. 10. Prof Edgar Cahn – ‘Time banking’
  11. 11. Map analogy (Edgar Cahn)
  12. 12. Map analogy (Edgar Cahn)
  13. 13. “no more throwaway people”
  14. 14. “Co-production: a manifesto for growing the core economy” nef ht: Alison Cameron @allyc375
  15. 15. “The future of the professions” – which resource is scarce?
  16. 16. Where are the unpaid carers in policy?
  17. 17. Whole person care (whole except for the million unpaid carers)
  18. 18. Co-production in policy “Based on the work of these authors, there is growing recognition of co-production in current theory and practice on grounds that can be described as pragmatic, intellectual and instrumental. Underneath them all, however, is tacit acceptance of the right of citizens-as-clients to participate in the policy process, to be fully active in those areas of policy that affect them collectively and individually. In other words, a political justification is also present for recognising and adopting co-production.” Bill Ryan “Co-production: option or obligation?” Australian Journal ofPublic Administration, vol. 71, no. 3, pp. 314–324
  19. 19. Discourses around dementia can involve: • fear, • stigma, • negative media representations, • pessimistic attitudes on the part of professionals [Source: “Living positively with dementia: a systematic review and synthesis of the qualitative literature” E.L. Wolverson, C. Clarke and E.D. Moniz-Cook (2015)]
  20. 20. “It is only recently that the views of people living with dementia have been elicited in any kind of detailed or systematic fashion” (Hulko, 2009)
  21. 21. From whose perspective is a community “dementia friendly”?
  22. 22. Phillip Blond – ResPublica what is a community?
  23. 23. 6%of 2068 people who completed the English survey
  24. 24. #sharetheorange promotional video from Alzheimer’s Research UK 6o
  25. 25. ‘Dementia Friends’ Canada promotional video Yk
  26. 26. ‘Nudge’ and dementia friendly communities
  27. 27. UN Convention on Rights for People with Disabilities
  28. 28. by February 2013, it has been signed by 155 countries, and ratified by 127.
  29. 29. Examples of ‘reasonable adjustments’ • reallocation of a duty a disabled employee cannot do • providing a piece of equipment • providing a disabled employee with a mentor • swapping roles with another employee
  30. 30. Dr Richard Taylor PhD 2014 Alzheimer’s Disease International Puerto Rico “Stop using dementia to campaign for us”
  31. 31. ‘anti-oppression research’ “Oppression can be defined as a condition in which a particular social group is exploited or constrained for the benefit of another social group, whose members may not be conscious of either their privilege or their culpability”. (Hulko, 2009)
  32. 32. Are patient leaders at the heart of policy?
  33. 33. Kate Swaffer
  34. 34. Corporate capture
  35. 35. Luft and Ingham 1955 – “Johari windows”
  36. 36. Cure vs Care (Chaufan, 2012)
  37. 37. Conferences
  38. 38. ‘Wandering dementia’
  39. 39. ‘Challenging behavior dementia’
  40. 40. Does policy trump rights?
  41. 41. Human rights are inalienable and universal. It is not possible, lawfully, therefore to discriminate on the basis of mental capacity which people are involved in ‘engagement’ and ‘empowerment’ are policy.
  42. 42. “They are more interested in the shiny new product rather than the process of co-design” (Anonymous service user)