I set out to make current dementia policy in England open to the public. This is the final talk to be given by me, Dr Shibley Rahman, at BPP Law School this evening, on cure, care and research.

1. Cure, care and research
Dr Shibley Rahman
Thursday, 17 September 2015
BPP Law School, London

5. • Cure
• Care
• Research

7. ‘I statements’
• I have personal choice and control over the decisions that affect me.
• I know that services are designed around me, my needs and my
carer’s needs.
• I have support that helps me live my life.
• I have the knowledge to get what I need.
• I live in an enabling and supportive environment where I feel valued
and understood.
• I have a sense of belonging and of being a valued part of family,
community and civic life.
• I am confident my end of life wishes will be respected.
• I can expect a good death.
• I know that there is research going on which will deliver a better life
for people with dementia,

8. Improved public awareness and understanding
of the factors which increase the risk of
developing dementia and how people can reduce
their risk by living more healthily.
This should include a new healthy ageing
campaign and access to tools such as a
personalised risk assessment calculator as
part of the NHS Health Check.

9. In every part of the country people with
dementia having equal access to diagnosis as
for other conditions, with an expectation that
the national average for an initial assessment
should be six weeks following a referral from
a GP (where clinically appropriate), and that
no one should be waiting several months for
an initial assessment of dementia.

11. Every person diagnosed with dementia having
meaningful care following their diagnosis,
which supports them and those around them,
with meaningful care being in accordance
with published National Institute for Health
and Care Excellence (NICE) Quality
Standards.

14. Post diagnosis support should, consistent with
that consensus, be renamed to life planning
(immediate) and care and support (medium to
longer term) for people with dementia.
Barbican Consensus, 2015

15. New models of care – NHS
England
“Actively consider how the New Care Models
might form part of the solution for the selected
health and care economies, rather than trying to
patch up struggling services in old ways.” (p.10)

16. Cognitive reablement
• Cognitive impairments, including problems with
memory, are fundamental to all dementias.
• Interventions that target these cognitive deficits and the
associated difficulties with activities of daily living are
the subject of ever-growing interest.
• Further well-designed studies of cognitive training and
cognitive rehabilitation are required to provide more
definitive evidence
(Bahar-Fuchs, Clare and Woods, 2013).

17. Care pathways
• The commissioning tool published by NICE in
April 2013 enables commissioners to show
how well they are performing against a range
of outcome measures that together demonstrate
how well the whole system is working.
• Care pathways should offer choices in the type
and intensity of treatment and interaction with
services (Guss et al., 2014).

20. Co-morbidity
• People with dementia have among the highest levels of multi-
morbidity of any long-term disorder.
• As with other disorders, multi-morbidity with dementia predicts
poor outcomes and poor quality service response.
• People with long-term chronic conditions and dementia report
• fewer symptoms than do those without dementia, and undiagnosed
but treatable disease has been reported in almost half of those with
dementia (Banerjee, 2015).
• It is this co-morbidity which, arguably, make
• s living with dementia especially interesting.

22. Regulation
• During 2013 and 2014, the Care Quality
Commission carried out a thematic review of
the care people living with dementia receive as
they moved between care homes and acute
hospitals (Care Quality Commission, 2014)
• Overall they found more good care than poor
care in the care homes and hospitals our
inspectors visited.

23. Care at home
Care at home is extremely important (chapter
13), not least because many prefer it. The UK
Homecare Association estimates that 60% of
people receiving care at home have a form of
dementia (UKHCA, 2013), and yet minimum
standardised training and sufficient workforce
development opportunities are not
commonplace.

24. With the cost of regulation increasing and the
Low Pay Commission already noting that along
with childcare, social care has the highest labour
cost to turnover ratio in the country, many
providers are in a position in which they simply
cannot afford to pay the Living Wage’ (Care
England, 2015).

25. All NHS staff having received training on
dementia appropriate to their role. Newly
appointed healthcare assistants and social
care support workers.

26. All hospitals and care homes meeting agreed
criteria to becoming a dementia friendly
health and care setting.

29. Approximately in the UK two-thirds of people
with dementia currently live in the community,
but a third of people with dementia live in care
homes (cited in Alzheimer’s Society, 2015).
Of these, one-third live alone in their own homes
(Mirando-Costillo et al., 2010).

30. Alzheimer’s Society delivering an additional 3
million Dementia Friends in England, with
England leading the way in turning Dementia
Friends into a global movement including
sharing its learning across the world and
learning from others.

32. Over half of people living in areas that have
been recognised as Dementia Friendly
Communities, according to the guidance
developed by Alzheimer’s Society working
with the British Standards Institute.

33. All businesses encouraged and supported to
become dementia friendly, with all industry
sectors developing Dementia Friendly
Charters and working with business leaders
to make individual commitments (especially
but not exclusively FTSE 500 companies)

34. National and local government taking a
leadership role with all government
departments and public sector organisations
becoming dementia friendly and all tiers of
local government being part of a local
Dementia Action Alliance.

35. Dementia research as a career opportunity of
choice with the UK being the best place for
Dementia Research through a partnership
between patients, researchers, funders and
society.

36. Funding for dementia research on track to be
doubled by 2025.

37. $100m Dementia Discovery Fund
17 March 2015
Major pharmaceutical companies, Alzheimer’s Research UK and government
all commit in principle to investing in the fund.
A $100m Dementia Discovery Fund announced at the World Health
Organization’s First Ministerial Conference on Global Action Against
Dementia.
Major pharmaceutical companies have all committed in principle to investing
in the project, alongside Alzheimer’s Research UK and the UK government.
The ultimate aim is to develop pioneering new drugs to treat the condition.
The money committed by investors in March 2015 included the
£15m that the UK government announced for the fund in
autumn 2014.

38. An international dementia institute
established in England.

40. NIHR
1. International Action Plan: Contributing to the
development of an international action plan for
research, which will account for the current state
of science and promote global efforts to maintain
brain health and find therapies for dementia.

41. 2. Championing research: Working with clinical
academics and the NHS.

42. 3. Patients and their data: Improving recruitment
of patients into research through building on the
NHS Constitution pledge to inform patients
about opportunities to participate in research and
engaging the NHS in the implementation of 'Join
Dementia Research’.

43. 4. Facilitating clinical research: Working with
the Translational Research Collaboration and the
NIHR Clinical Research Network towards
achieving common research platforms; working
within current frameworks for consent and use of
data to promote sharing of data from existing
research.

45. An aside on translationary
research..
1. Patient stratification through identification
and validation of diagnostic and prognostic
biomarkers of disease and genetic markers of
susceptibility.
2. Discovery, development and delivery of
innovative disease modifying therapies,
which include those discovered through the
longitudinal study of genetically at-risk
cohorts.

46. 3. Identification of new disease-causing genes
and subsequent development ofclinical testing.
4. Extrapolation of discoveries in young onset
dementia to older patient groups
5. Detection, prevention and treatment of protein
misfolding and aggregation indementia

47. 6. Living Well with Dementia: Facilitating
research to support living well with dementia
initiatives and identifying effective interventions,
in the clinic, in the nursing home, and in
everyday life.

48. 6. Building research capacity and addressing
other barriers to research progress.

51. Increased investment in dementia research
from the pharmaceutical, biotech devices and
diagnostics sectors, including from small and
medium enterprises (SMEs), supported by
new partnerships between universities,
research charities, the NHS and the private
sector.

52. Cures or disease modifying therapies on track
to exist by 2025, their development
accelerated by an international framework for
dementia research, enabling closer
collaboration and cooperation between
researchers on the use of research resources –
including cohorts and databases around
the world.

53. The ‘amyloid hypothesis’

54. Issues with ‘the amyloid
hypothesis’

55. • Aβ deposition occurs in cognitively normal individuals
• Why are plaques present in cognitively normal
individuals?
• Studying Aβ oligomer toxicity in vivo is
methodologically difficult
• Pre-clinical AD models are not representative of human
disease

66. Morris, Clark and Vissel (2014)
“So far, anti-Aβ treatments have broadly
failed to meet their primary clinical endpoints
and some major phase 3 trials were halted
early. None of the tested treatments have
produced a discernible functional recovery, or
altered the course of disease. In fact
alarmingly some, specifically inhibitors of γ-
secretase, lead to an increased decline in
cognition.”

67. Morris, Clark and Vissel (2014)
“Another prominent suggested reason for
clinical failures of anti-Aβ drugs in particular
are that the agents used initially were not
properly validated and were flawed. A recent
study has shown the monoclonal anti-Aβ
antibodies, solanezumab and crenezumab, fail
to target human Aβ as effectively as they
target over-expressed human Aβ in mouse
models.”

68. More research made readily available to
inform effective service models and the
development of an effective pathway to enable
interventions to be implemented across the
health and care sectors.

70. Open access to all public funded research
publications, with other research funders
being encouraged to do the same.

71. 4 areas of ‘World Dementia
Council’ work
• Integrated development – Optimising the
path of medicines from research through to
market by reducing barriers & encouraging
regulatory flexibility. This work is being led by
WDC member Raj Long, Senior Regulatory
Officer, Integrated Development, Global
Health at the Bill & Melinda Gates
Foundation.

72. 4 areas of ‘World Dementia
Council’ work
• Finance and incentives – Looking at ways to
increase the relatively low investment in
funding dementia innovation by exploring new
types of funding product.

73. 4 areas of ‘World Dementia
Council’ work
• Open science – Unleashing the potential of open
science for sharing information and knowledge to
accelerate progress in developing new treatments
and care approaches, and avoiding wasteful
duplication of effort.
Both the World Health Organisation and OECD will
be supporting the Council in developing their
work on this.
.

74. 4 areas of ‘World Dementia
Council’ work
• Public health/prevention – The Council is also
beginning an evidence review into existing
research on how risk factors such as diabetes and
heart disease relate to dementia, as well as
looking into public health messaging on lifestyle
and prevention.
WDC member Harry Johns, President and CEO of
Alzheimer’s Association, Harry Johns
is leading this review.
.

75. Increased numbers of people with dementia
participating in research, with 25 per cent of
people diagnosed with dementia registered on
Join Dementia Research and 10 per cent
participating in research, up from the current
baseline of 4.5 per cent.

78. • Cure
• Care
• Research

79. • Dementia friendly communities
• Choice: budgets or human rights
• Integrated care and whole person care
• Cure, care and research