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The importance of citizenship
for living better with dementia
Shibley Rahman
Camden – July 11th 2015
The hashtag is
Or
#TwinnieBooks
Today
2.00 pm Registration
2.15 pm Introduction by Beth Britton
2.25 pm Shibley
3.15 pm Refreshments
3.45 pm Kate
4.35 pm ...
See delegate pack for details about the Wifi.
WIFI Network Name: ACC
You are encouraged to use your self-adhesive
label
47 million people in the world
850000 roughly in the UK
“Our health and social care services cannot
afford to allow the insight and other life
skills that people using health and...
• Kate Swaffer
• Chris Roberts
• Beth Britton
• Arlington Centre
• Jessica Kingsley Publishers
#CamdenKS
Power is “the ability to cause or prevent
change”
(May (1973) Power and Innocence)
Discourses around dementia can involve:
• fear,
• stigma,
• negative media representations,
• pessimistic attitudes on the...
“It is only recently that the views of people
living with dementia have been elicited in any
kind of detailed or systemati...
6%of 2068 people who completed the
English survey
“But how many times have you been told the same
old words, ‘you do not look like you have
dementia?’, I often wonder if it...
“I’m 59 years young, live happily alone in
Yorkshire, have 2 daughters and I continued to work
full time in the NHS until ...
5 themes for improvement?
• Seeing care from the patient’s perspective
• Creating a climate for improvement
• Tackling ‘ve...
Care Act (2014)
“The general duty of a local authority, in
exercising a function under this Part in the case
of an individ...
‘Admiral nurses’ need to be able to demonstrate
skills for “revalidation” – e.g. “PebblePad”
“She has quite simply changed my life. She is
the best thing to happen to me in years. I feel
supported, taken seriously a...
Examples of ‘reasonable
adjustments’
• reallocation of a duty a disabled employee
cannot do
• providing a piece of equipme...
“Equity recognizes that some are at a larger
disadvantage than others and aims at
compensating for these peoples misfortun...
UN Convention on Rights for People with
Disabilities
by February 2013, it has been signed by 155
countries, and ratified by 127.
a “dementia friendly Yeovil”?
specification for dfcs
what about simply “inclusive communities”?
Prescribed Dis-engagement TM
“Following a diagnosis of dementia, most health
care professionals …prescribe giving up a pre...
“recovery”
de-institutionalise
promote dignity
anti-discrimination
“Recovery is often described as a long-term
process or ‘journey’ and is not simply the
absence of symptoms.”
“It is based on hope, involvement, participation,
inclusion, meaning, purpose, control and self-
management, and emphasise...
SCIE – “At a glance” 46 – October
2011
“The focus of reablement is on
restoring independent functioning
rather than resolv...
Rehabilitation is a strategy aimed at optimising
physical and mental health capacities of
functioning in people who are li...
personhood is a key way to address
discrimination
possible potential criticisms?
lack of political dimension
does not full...
Move from ‘person with DEMENTIA’ to
‘PERSON with dementia’
(Bartlett and O’Connor 2007; Kitwood, 1997)
is personhood too individualised?
research
“After a diagnosis of dementia your whole family
also receive the diagnosis, it's a team effort. What
we then need is hope...
• Cure by 2025?
• Care?
‘anti-oppression research’
“Oppression can be defined as a condition in
which a particular social group is exploited or
co...
Dr Jennifer Bute
It can be a Positive Journey
It appears that the spiritual being remains true to
the end and does not degenerate in the sa...
So I can still show love and care. I will still be
able to pray and be sure of the future.
In Heaven there will be no tear...
Thank you.
Dr Shibley Rahman presentation on citizenship and dementia
Dr Shibley Rahman presentation on citizenship and dementia
Dr Shibley Rahman presentation on citizenship and dementia
Dr Shibley Rahman presentation on citizenship and dementia
Dr Shibley Rahman presentation on citizenship and dementia
Dr Shibley Rahman presentation on citizenship and dementia
Dr Shibley Rahman presentation on citizenship and dementia
Dr Shibley Rahman presentation on citizenship and dementia
Dr Shibley Rahman presentation on citizenship and dementia
Dr Shibley Rahman presentation on citizenship and dementia
Dr Shibley Rahman presentation on citizenship and dementia
Dr Shibley Rahman presentation on citizenship and dementia
Dr Shibley Rahman presentation on citizenship and dementia
Dr Shibley Rahman presentation on citizenship and dementia
Dr Shibley Rahman presentation on citizenship and dementia
Dr Shibley Rahman presentation on citizenship and dementia
Dr Shibley Rahman presentation on citizenship and dementia
Dr Shibley Rahman presentation on citizenship and dementia
Dr Shibley Rahman presentation on citizenship and dementia
Dr Shibley Rahman presentation on citizenship and dementia
Dr Shibley Rahman presentation on citizenship and dementia
Dr Shibley Rahman presentation on citizenship and dementia
Dr Shibley Rahman presentation on citizenship and dementia
Dr Shibley Rahman presentation on citizenship and dementia
Dr Shibley Rahman presentation on citizenship and dementia
Dr Shibley Rahman presentation on citizenship and dementia
Dr Shibley Rahman presentation on citizenship and dementia
Dr Shibley Rahman presentation on citizenship and dementia
Dr Shibley Rahman presentation on citizenship and dementia
Dr Shibley Rahman presentation on citizenship and dementia
Dr Shibley Rahman presentation on citizenship and dementia
Dr Shibley Rahman presentation on citizenship and dementia
Dr Shibley Rahman presentation on citizenship and dementia
Dr Shibley Rahman presentation on citizenship and dementia
Dr Shibley Rahman presentation on citizenship and dementia
Dr Shibley Rahman presentation on citizenship and dementia
Dr Shibley Rahman presentation on citizenship and dementia
Dr Shibley Rahman presentation on citizenship and dementia
Dr Shibley Rahman presentation on citizenship and dementia
Dr Shibley Rahman presentation on citizenship and dementia
Dr Shibley Rahman presentation on citizenship and dementia
Dr Shibley Rahman presentation on citizenship and dementia
Dr Shibley Rahman presentation on citizenship and dementia
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Dr Shibley Rahman presentation on citizenship and dementia

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This is the talk I intend to give at the Arlington Centre on Saturday 11th July 2015. It centres around active citizenship of people with dementia, shaping the general discourse about dementia.

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Dr Shibley Rahman presentation on citizenship and dementia

  1. 1. The importance of citizenship for living better with dementia Shibley Rahman Camden – July 11th 2015
  2. 2. The hashtag is
  3. 3. Or #TwinnieBooks
  4. 4. Today 2.00 pm Registration 2.15 pm Introduction by Beth Britton 2.25 pm Shibley 3.15 pm Refreshments 3.45 pm Kate 4.35 pm Beth talking about her experience 4.45 pm Short discussion 5.15 pm Close 7.00 pm Dinner
  5. 5. See delegate pack for details about the Wifi. WIFI Network Name: ACC
  6. 6. You are encouraged to use your self-adhesive label
  7. 7. 47 million people in the world 850000 roughly in the UK
  8. 8. “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
  9. 9. • Kate Swaffer • Chris Roberts • Beth Britton • Arlington Centre • Jessica Kingsley Publishers #CamdenKS
  10. 10. Power is “the ability to cause or prevent change” (May (1973) Power and Innocence)
  11. 11. 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)]
  12. 12. “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)
  13. 13. 6%of 2068 people who completed the English survey
  14. 14. “But how many times have you been told the same old words, ‘you do not look like you have dementia?’, I often wonder if it’s down to the fact that people feel embarrassed to talk to you about it, then just open their mouths and this falls out. I have been out walking with my wife on numerous occasions, and someone has stopped and spoken to her, then asked her clearly how I am, instead of asking me.” (Ken Clasper)
  15. 15. “I’m 59 years young, live happily alone in Yorkshire, have 2 daughters and I continued to work full time in the NHS until the end of March 2015, when I chose to take early retirement to enable me to enjoy being me while I’m able. I have never ‘tweeted’, ‘blogged’ or ‘facebooked’ in my life but since I was diagnosed with early onset Alzheimer’s, everything else in my life has changed, so why not this. I hope you find my ramblings of interest.” Wendy Mitchell
  16. 16. 5 themes for improvement? • Seeing care from the patient’s perspective • Creating a climate for improvement • Tackling ‘very poor’ care • Co-creating improvement • Measurement and feedback (from talk by Neil Churchill, 6 November 2013, @NHSEngland) - Can be understood from the perspective of a patient, provider or commissioner.
  17. 17. Care Act (2014) “The general duty of a local authority, in exercising a function under this Part in the case of an individual, is to promote that individual’s well-being.” Section 1(1)
  18. 18. ‘Admiral nurses’ need to be able to demonstrate skills for “revalidation” – e.g. “PebblePad”
  19. 19. “She has quite simply changed my life. She is the best thing to happen to me in years. I feel supported, taken seriously and offered hope such that I can go on.” A family carer in Kent, about an Admiral Nurse.
  20. 20. 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
  21. 21. “Equity recognizes that some are at a larger disadvantage than others and aims at compensating for these peoples misfortunes and disabilities in order to make sure that everyone is capable of attaining the same type of healthy lifestyle.” (Wikipedia)
  22. 22. UN Convention on Rights for People with Disabilities
  23. 23. by February 2013, it has been signed by 155 countries, and ratified by 127.
  24. 24. a “dementia friendly Yeovil”? specification for dfcs what about simply “inclusive communities”?
  25. 25. Prescribed Dis-engagement TM “Following a diagnosis of dementia, most health care professionals …prescribe giving up a pre- diagnosis life and put all the planning in place for the demise of the person newly diagnosed with dementia such as wills, powers of guardianship and other end of life issues. I was told ‘to give up work, give up study, and to go home and live for the time I had left’. Swaffer, 2015
  26. 26. “recovery” de-institutionalise promote dignity anti-discrimination
  27. 27. “Recovery is often described as a long-term process or ‘journey’ and is not simply the absence of symptoms.”
  28. 28. “It is based on hope, involvement, participation, inclusion, meaning, purpose, control and self- management, and emphasises the importance of peer support, meaningful activity, employment, maintaining social networks and activities when distressed and having the chance to contribute, or give back, in some way.”
  29. 29. SCIE – “At a glance” 46 – October 2011 “The focus of reablement is on restoring independent functioning rather than resolving health care issues.”
  30. 30. Rehabilitation is a strategy aimed at optimising physical and mental health capacities of functioning in people who are likely to experience disabilities. Many health systems fail to respond to rehabilitation needs.
  31. 31. personhood is a key way to address discrimination possible potential criticisms? lack of political dimension does not fully embrace “citizenship”
  32. 32. Move from ‘person with DEMENTIA’ to ‘PERSON with dementia’ (Bartlett and O’Connor 2007; Kitwood, 1997)
  33. 33. is personhood too individualised?
  34. 34. research
  35. 35. “After a diagnosis of dementia your whole family also receive the diagnosis, it's a team effort. What we then need is hope; this is what research gives us. That's why it's so important for people to be aware and to know that research is taking place. As well as the people living with dementia we also need people with healthy brains.” (Chris Roberts, on ITV news 3 July 2015)
  36. 36. • Cure by 2025? • Care?
  37. 37. ‘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)
  38. 38. Dr Jennifer Bute
  39. 39. It can be a Positive Journey It appears that the spiritual being remains true to the end and does not degenerate in the same way as the brain.
  40. 40. So I can still show love and care. I will still be able to pray and be sure of the future. In Heaven there will be no tears or sorrow for you or me.
  41. 41. Thank you.

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