Alzheimer’s Society briefing
FEBRUARY 2009
National Dementia
Strategy for England
The Department of Health has launched the first ever National Dementia Strategy for
England. Alzheimer’s Society has been working closely with the government over the last
18 months to develop the plan. This supplement explains what the Strategy says, what the
Society will be doing and some responses from people
What is the National Dementia
Strategy?
The National Dementia Strategy is
the government’s plan which
explains what needs to happen to
radically transform the quality of
life for people with dementia and
their carers in the next five years in
England. Similar plans are also
being developed in Wales and
Northern Ireland.
for people with dementia and
carers to offer mutual support in
places such as support groups
and dementia cafes.
6. Better care for people living at
home. The Strategy suggests a
range of local services that
Set out below is a list of the
people with dementia and
recommendations in the Dementia
carers should be able to access.
Strategy and a short summary
7. Improved help for carers.
about what each one says.
Carers of people with dementia
must be able to access the
1. A national public information
support offered in their area by
campaign. The Strategy
The England Strategy has been put
local authorities and the NHS
recommends a national public
together following consultation
under the Carers’ Strategy.
awareness campaign to improve
with thousands of people with
8. Better care in hospitals.
public understanding about
dementia, carers and health and
The Strategy outlines the need
dementia and reduce stigma.
social care professionals. It does
for a doctor in charge of
not seek to identify everything that 2. More and better memory
dementia plus teams to
services. Localities need to
will need to happen everywhere in
support people with dementia
develop a better network of
order to change life for people
in every hospital.
specialist services to diagnose
living with dementia.
9. Better care before or after a
dementia earlier.
hospital visit (intermediate
3. Better information about
It does explain the big things that
care). When people with
dementia. The Strategy
need to happen to get it right. Each
dementia need help to prepare
envisages that there will be
regional area will need to consider
to go into, or on discharge, from
better information available for
how the recommendations in the
hospital, this needs to be
more people earlier on.
Strategy can be made to work
available in the same way as it
locally and what the priorities are for 4. A dementia adviser. The
is for other people.
Strategy proposes the
progress in each area.
10. Dementia friendly housing and
employment of dementia
technology. Planners and
advisers so that following
What does the Dementia Strategy
housing providers need to
diagnosis, everyone with
say?
prepare for people with
dementia, and their carers, will
The Dementia Strategy sets out
dementia now and in the future.
have a named contact who can
17 recommendations for action
provide information about local 11. Better care in care homes.
that the government wants to see.
All homes should have
services.
To read the full Strategy, go to
5. More peer support. There
www.dh.gov.uk/dementia or for a
should be more opportunities
paper copy of the summary version
continues overleaf ➜
page 1
please write to: NDS Summary at
Alzheimer’s Society’s address on
page 3 of Living with Dementia
magazine, enclosing your name
and address.
alzheimers.org.uk
continued from p1
12.
13.
14.
15.
16.
17.
someone in charge of dementia
and better access to specialist
help to give people a stimulating
environment and reduce the use
of sedative drugs.
Better care at the end of life.
There needs to be increased
focus on end of life care for
people with dementia,
particularly in relation to
planning and pain relief.
Better trained staff. There
needs to be a significant focus
on improving the skills of
people working across the NHS
and social services by
improving the availability of
dementia training.
Proper planning of services.
Local councils and the NHS will
need to work together to plan
services for people with
dementia and carers.
Regulation of services for
dementia. The Care Quality
Commission, responsible for
regulating and inspecting all
services, will regulate and
inspect for good dementia care.
Research into dementia.
The Department of Health will
work with the Medical Research
Council and other research
funders to develop a plan for
dementia research in the UK.
National and regional support
for services. The NHS and social
services will be educated on
good practice in dementia care.
Will it make a difference?
The Society believes the Strategy
will make an incredible difference
to the quality of life of people with
dementia and carers if it is
implemented. The content of the
strategy is right. Now we need to
make sure that it happens.
The Strategy and the Society
The launch of the National
Dementia Strategy has coincided
with the development of
Alzheimer’s Society’s new services
strategy. This strategy identified
information, education and support
as the Society’s core services,
along with care services in a number
of locations.
We are now working to maximise
the opportunities provided through
the National Dementia Strategy to
deliver quality services which provide
choice and control and help people
live their lives to the full.
Public awareness
We will continue to raise public and
professional awareness about
dementia. Our strong local networks
enable us to raise awareness in local
communities. We want to extend
our local reach and strengthen our
national influence by developing our
media work and our involvement in
public campaigns to raise awareness
and change attitudes.
Better information
In line with the information
challenges set out in the National
Dementia Strategy, the Society
intends to develop, extend and
improve the quality of its
information services.
This will see the launch of a new
dementia adviser service.
This service will provide a specialist
dementia adviser who will be a
named contact for the person with
dementia and their carer
throughout the dementia journey.
Referrals to the dementia adviser
service may be from GPs,
Community Mental Health Teams
and other health and social care
professionals, or by self-referral.
It will take time for the plan to be
delivered as we are a long way from
the vision described in the Strategy. The dementia adviser service will:
However, we are already seeing
• provide quality information
progress in lots of areas of the
tailored to individual need and
country. The Society will be working
signpost people to other
hard in the next five years to ensure
appropriate support services
that people with dementia and
• focus on the individual,
their carers see the maximum
empowering them to access the
benefit as soon as possible.
information they need. They will
Living with dementia
also promote independence,
self-help, well-being, choice
and control
• act collaboratively with other
health and care professionals
who are involved in the life of the
person with dementia
• be accessible and seek out people
we traditionally find hard to
reach (we will assess the
feasibility of extending our
helpline services so they are
available to everyone at times
that people most need them).
The dementia adviser will be
supported by trained volunteers,
the Society’s established local
networks across England, Wales
and Northern Ireland and have
access to a constantly developing
range of information, support,
education and care services. The
dementia adviser will not provide
ongoing intensive support, case
management or advocacy.
Education and learning
We will strengthen and extend our
learning and education
programmes, develop the skills of
our own staff and extend our
programmes to professionals in care
homes, health settings and other
social care environments.
Our highly successful Yesterday
today and tomorrow introduction to
dementia training package is being
replaced with a fully updated new
programme called Tomorrow is
another day. This will be launched in
late spring.
We are also launching a new
dementia leadership programme,
Dementia Champions, as well as
extending our range of face-to-face
learning opportunities, increasing
sales of our learning and education
products and developing e-learning
opportunities.
Support
Alongside our new dementia adviser
service, our support workers will
continue to provide quality on-going
support to people with dementia
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and carers. We plan to expand these
services so that more people will be
able to access them more easily.
We also plan to expand and
strengthen peer support networks
for people with dementia and carers.
We will evaluate existing models of
peer support, including support
groups, dementia cafes, day
opportunities and befriending
services, to ensure the development
of our services is based on evidence
about what really helps people with
dementia.
In response to the rapid growth in
use of online services, we want to
develop online peer support for
people with dementia and carers.
Our developing range of support
services will offer everyone affected
by dementia increasing choice and
control.
The launch of the Dementia
Strategy is a unique and exciting
opportunity for the Society to
develop its information, education,
and support services so that they
make a difference to the lives of
everyone affected by dementia.
Funding
The cost of dementia in the UK is
going to rise from £17 billion now
to more than £25 billion by 2018.
New funding has been
announced with the launch of
the National Dementia Strategy.
However, in addition, the NHS
and local authorities will need to
find extra investment from local
budgets and find ways to deliver
better value for money.
Dementia research
The Department of Health has
announced that it will be working
with the Medical Research
Council to hold a dementia
research summit in summer
2009. The purpose of the summit
will be to draw together major
research funders to establish an
agreed way forward for UK
dementia research.
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The Society’s role in
shaping the Strategy
Work began on developing a
new National Dementia Strategy
for England in 2007. From the
very beginning, the Society,
people with dementia and
carers played a vital role in
shaping the priorities and content
of the Strategy.
People with dementia and carers
who were not members of these
groups were asked to contribute
their views by attending regional
events. Their comments proved
invaluable in developing the draft
Strategy, which was published in
June 2008.
Several formal groups were involved
in steering the work. Each group
had a carer and person with
dementia as a member, as well as a
representative from Alzheimer’s
Society. Chief Executive Neil Hunt
chaired the External Reference
Group (ERG), which was charged
with providing guidance on the
Strategy’s content.
The Society consulted widely on
the draft Strategy to inform its
policy response and hundreds of
staff, volunteers and members
contributed their views. Branches
held over 35 events specifically for
people with dementia and carers.
Three sub groups supported the
External Reference Group by each
advising on a specific theme:
raising awareness, improving early
diagnosis, and better quality care.
We would like to take this
opportunity to thank all our
members and the Living with
Dementia group for their expert
advice and help. The final version
of the Strategy is a testament to
this expertise.
MPs appeal for evidence
In line with the recommendations of
the Dementia Strategy, particularly
recommendation 13 to provide
dementia training to health and
social care professionals, the All-Party
Parliamentary Group on Dementia
(APPG)* is investigating the level and
quality of dementia care skills and
training of social care staff.
The group wants to gain a better
understanding of the current state
of the social care workforce to find
out to what extent it is equipped to
support increasing numbers of
people with dementia.
The investigation will focus on staff
working in care homes and those
who support people with dementia
in their homes. In particular, the
group wants to hear about your
experiences of highly skilled or
poorly trained staff.
Alzheimer’s Society will be
submitting evidence to the inquiry
but hopes that Living with
Dementia readers will take
advantage of this opportunity to
share their experiences and submit
evidence too.
If you are willing to share your
experience of standards of
dementia care with the group,
please contact the campaigns team
by emailing [email protected]
or calling 020 7423 3585.
Alternatively, visit the website
(alzheimers.org.uk/appg) where you
can download a copy of the inquiry
questions and submit your
experiences electronically.
*The APPG on Dementia is a group
of influential MPs and Peers
interested in dementia issues.
alzheimers.org.uk
Hopes for the strategy
Sube Banerjee,
Co-leader on
the National
Dementia
Strategy and
Professor of
Mental Health
and Ageing at
King’s College London
‘I hope that by implementing the
Strategy we will transform for the
better, the expectations and
experiences of all those with
dementia and their family carers.
If we can change things so that
attitudes and understanding
encourage help-seeking early and
reward this with a specialist
diagnosis which is made well, broken
well, and followed up with the
immediate care and support, we
will have made a critical difference
in the way services work and
people with dementia and their
carers are served.
To follow this with good quality,
properly tailored care at all stages
of dementia would complete
the picture.’
Alzheimer’s
Society
campaigner
and former
carer Barbara
Pointon
‘I hope the
Strategy ensures quality support
for both the person with dementia
and their carer from diagnosis to
death, preferably by having a
named dementia-trained person as
their first contact whenever they
need advice. And that it leads to
mandatory training of the
workforce to achieve a better
understanding of what it’s like to
live with dementia.
Living with dementia
Family carers deserve regular breaks
from 24/7 vigilance, preferably with
free (some hope!) well-trained
replacement care, to enable them to
carry on caring.’
Ken Clasper
(who has
dementia with
Lewy bodies)
and Janice
(Ken’s carer)
staff. Most importantly people
should be able to make wellinformed choices about the kinds of
services they need.’
Society’s Chief
Executive
Neil Hunt
‘It’s about time.
The Society
has been
campaigning for
30 years to get here; where
‘People with
dementia and their carers deserve a dementia is recognised as a priority
better quality of life than they get at by the government. Now that proper
present so we must ensure that this care and support are on the agenda
and there is real momentum for
Strategy succeeds. We need to see
all NHS staff and GPs trained in how change, we have to deliver the
Strategy so that no one living with
to spot someone with dementia,
dementia has to go through it alone.
then get them referred to someone
who can complete the diagnosis and
The opportunity is here and we will
hopefully prescribe medication.
be working with the government,
the NHS and social services across
We also need to see all care home
staff being fully trained in dementia the country to make sure that things
are better in future.’
care, so that those going on this
journey are not mistreated and
Peter Ashley,
drugged but given the care and
who has
quality of life that they deserve.’
dementia with
Lewy bodies
Jenny Owen,
Co-Leader of
‘The removal
the Strategy
of stigma for
and Director of
those
Adult Social
diagnosed with dementia is
Care for Essex
absolutely critical as is the
County Council
recognition that dementia is not
just Alzheimer’s but a wide family
The Dementia Strategy should
of terminal conditions each with
challenge the stigma of dementia
its own unique characteristics.
and ensure that we all have the
same high expectations of health
and social care services for dementia People with dementia must be
treated with respect throughout
that we do for all other serious lifetheir lives and not regarded as
threatening illnesses.
second class citizens, always
consulted and included in any
Within five years, all people with
debate about them or subjects
dementia should be able to access
an efficient and effective diagnostic relating to their dementia.
Our voices must always rank equally
service, and excellent care and
with others.’
health services provided by skilled
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