The Dementia Strategy:
time to change course
Government strategy on dementia has focused on medical
care and research rather than psychological and social
approaches, but the arrival of Theresa May in No 10 is a
chance to reverse these priorities, argue Jill Manthorpe
and Steve Iliffe in the first of a series of policy articles
he high level of societal
anxiety about dementia enough to get the then
prime minister David
Cameron’s attention in his
PM’s 2020 Challenge (2015) –
stems from the myth that an
ageing population causes the
costs of health care to rise
dramatically. As the authors of
the paper Apocalypse No
demonstrated 15 years ago
(Evans et al 2001), it is not just
ageing itself that inflates costs
but the actions of professionals
and new consumer
expectations about better
managing their long-term and
immediate needs. This has not
changed; a recent economic
modelling study showed that
ageing itself has barely any
effect on costs (Gheorghe et al
2016). It is the activity in the
very last period of life that
uses resources.
As an example of
professional inflation, the
promotion of memory clinics
in the NHS and the
introduction of screening for
dementia into general practice
are policies with questionable
scientific foundations (Le
Couteur et al 2013). At the
same time, other support for
people with dementia, such as
publicly funded social care,
has decreased (Fernandez et al
2013).
T
n Jill Manthorpe is professor of
social work at the Policy Institute at
King’s College London, and Steve
Iliffe is emeritus professor of primary
care for older people at University
College London. They are writing in
a personal capacity.
In this series of articles we
argue that investment to
reduce the harm of dementia
should go towards
strengthening social support
for people with dementia and
their families immediately,
while further promoting
healthy ageing in the medium
term. Research into causes of
and cures for dementia is a
longer term matter which
should be critically assessed
now that the well-resourced
Dementia Research Institute is
in place, for reasons which we
will explain in a later article.
Now that Theresa May has
taken over as prime minister,
she has the opportunity to put
her own stamp on dementia
policy by rewriting the PM’s
Challenge.
Redirecting resources
Boosting support for people
with dementia and their
families will need resources.
Ending the financial incentives
to achieve dementia diagnosis
targets, and converting
memory clinics into (probably
smaller) specialist clinics for
difficult diagnoses and as
centres of expertise to help
with the management of
distressing or challenging
behaviour, would release some
funds.
However, the funds released
by downsizing memory clinics
and ending GP screening may
not be enough. As the Barker
Report highlighted (Barker et
al 2014), the proper funding of
social care in England will cost
more than the sums estimated
for the now postponed Dilnot
reforms (capping charges for
social care expenditure by
individuals). We need to face
this openly, given that most
current scenarios for funding
services for people with
dementia involve the probably
unsustainable continued
transfer of labour to unpaid
family carers.
Healthy ageing protects the
brain, but it is more than a low
fat diet, brisk walking and the
avoidance of health hazards
like smoking or excess alcohol.
It includes having rich social
relationships, a high level of
education and the relief of
poverty, because all seem to
influence the risks of
developing dementia. A
serious strategy for dementia
will have to face some stark
policy choices about the
distribution of resources.
We should not
underestimate the difficulties
of changing the ways in which
the public, professionals and
policy makers think about
dementia. The metaphors,
stories and imagery that
construct our understanding
of dementia are powerful.
Nevertheless, the National
Dementia Strategy, launched
in 2009 in England
(Department of Health 2009),
and the two PM’s Challenge
documents (Department of
Health 2012, 2015) that came
afterwards, need refreshing.
While keeping their many
positive points, their least
useful components could be
replaced with plans that are
14 The Journal of Dementia Care November/December 2016 Vol 24 No 6
more realistic, more
psychological and social than
medical, and more engaging.
Rewriting the strategy
A psychological and social
approach to dementia would
emphasise public health
overall rather than focusing
solely on older people. It
would enhance educational
opportunities, increase
habitual physical activity in
midlife rather than just later
life, encourage smokers to stop
at all ages, lower high blood
pressure in midlife, and
reduce heart disease with
statins (ADI 2014). Central
government has recognised
that this menu of actions plays
to local government and NHS
strengths in public health.
Risks of heart disease are
falling, thanks in part to health
promotion efforts over
decades, and brains have been
protected too, which may
explain why estimates of the
numbers with dementia have
been proved wrong (Matthews
et al 2013).
For those who develop
dementia, psychosocial
therapies may help, including
cognitive stimulation therapy
to improve cognition and
mood (NICE/SCIE 2006),
promotion of intergenerational
relationships (Whitehouse
2013) and promotion of
physical activity, which may
also assist carers of people
with dementia whose
behaviour is distressing
(Lowery et al 2014).
These psychosocial
interventions, in aggregate, are
as well grounded in evidence
as current medical approaches
to dementia, but have the
added value of being mainly
relational rather than
technical. We will learn a lot
from them about personcentred care and support.
At the same time we will
need to acknowledge the
interrelationships between
dementia and physical
disabilities and illnesses (ADI
2016) and learn how to foster
social relationships that
support wellbeing (or not)
among people with dementia.
This will require attention to
the wider social networks of
people with dementia, not
only promoting dementia
friendly approaches but also
fostering mainstream
community and
neighbourhood development.
Research tasks
There is need for research, too.
Surprisingly, practitioners
have little evidence to draw on
from research into the impact
of socio-economic status and
deprivation, including
housing and the environment,
despite the growing
investment in dementia
research. The effects of
migration and written and
spoken languages on dementia
need studying because our
populations are changing and
several complexities arise (eg
literacy in one language but
not in English; family
members living overseas but
being in frequent contact with
their relatives or care services).
Key points
• New government gives the opportunity to restore the balance of
the English National Dementia Strategy
• There is a need to re-focus resources and professional help
• While screening for dementia in general practice and creating
memory services have absorbed resources, publicly funded social
care has declined.
• Evidence for psychosocial methods of supporting people with
dementia and carers is as good as if not better than
pharmaceutical treatments
• Prevention of dementia is becoming more feasible.
Perceptions of the accessibility
and appropriateness of
professional services, and
cultural attitudes to dementia,
need attention. Dementia
researchers may find they can
learn much from those
investigating ageing but also
other disabilities.
In the next articles we will
outline why we think that
dementia is not as big and as
expensive a problem as it has
been portrayed, and why it
may be easier to respond to by
enhancing social support than
by clinical treatment. We will
explain the implications of
approaching dementia not as a
disease but as a disability with
multiple causes that may be
more manageable by social
means than by medical
treatments.
And we will demonstrate
why screening for dementia is
not justified, why the benefits
of earlier overall recognition
are unproven, and why
dementia is poorly understood
despite decades of research.
Finally, we will make the case
that the care and support of
[email protected]
dementiaarchitects.co.uk / +44 (0)1886 821 971
people with dementia should
not primarily be an individual
or family responsibility. n
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