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.

1. The importance of citizenship
for living better with dementia
Shibley Rahman
Camden – July 11th 2015

2. The hashtag is

3. Or
#TwinnieBooks

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. See delegate pack for details about the Wifi.
WIFI Network Name: ACC

6. You are encouraged to use your self-adhesive
label

7. 47 million people in the world
850000 roughly in the UK

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

14. • Kate Swaffer
• Chris Roberts
• Beth Britton
• Arlington Centre
• Jessica Kingsley Publishers
#CamdenKS

15. Power is “the ability to cause or prevent
change”
(May (1973) Power and Innocence)

17. 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)]

19. “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)

23. 6%of 2068 people who completed the
English survey

27. “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)

29. “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

32. 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.

33. 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)

34. ‘Admiral nurses’ need to be able to demonstrate
skills for “revalidation” – e.g. “PebblePad”

36. “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.

46. 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

48. “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)

53. UN Convention on Rights for People with
Disabilities

54. by February 2013, it has been signed by 155
countries, and ratified by 127.

56. a “dementia friendly Yeovil”?
specification for dfcs
what about simply “inclusive communities”?

58. 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

60. “recovery”
de-institutionalise
promote dignity
anti-discrimination

63. “Recovery is often described as a long-term
process or ‘journey’ and is not simply the
absence of symptoms.”

64. “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.”

65. SCIE – “At a glance” 46 – October
2011
“The focus of reablement is on
restoring independent functioning
rather than resolving health care
issues.”

67. 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.

70. personhood is a key way to address
discrimination
possible potential criticisms?
lack of political dimension
does not fully embrace “citizenship”

71. Move from ‘person with DEMENTIA’ to
‘PERSON with dementia’
(Bartlett and O’Connor 2007; Kitwood, 1997)

73. is personhood too individualised?

74. research

77. “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)

78. • Cure by 2025?
• Care?

80. ‘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)

81. Dr Jennifer Bute

82. 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.

83. 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.

84. Thank you.