Prime Minister's challenge on dementia 2020 - February 2015
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Prime Minister’s challenge on
dementia 2020
February 2015
Contents 1 Contents 1. Prime Minister’s foreword 3 2. Executive summary 5 3. Why dementia remains a priority 9 4. Progress on improving dementia care, support and research 15 5. Transforming dementia care, support and research by 2020 23 6. Conclusion 49
2 Prime Minister’s challenge on dementia 2020
Prime Minister’s foreword 3
Prime Minister’s foreword
Since I became Prime Minister, fighting our NHS staff and over 100,000 social care
dementia – and helping those living with the staff trained in better supporting people
condition – has been a personal priority of with dementia. Our efforts on research have
mine. been world leading, with major research
The fall-out on people’s lives can be simply and infrastructure programmes now in
catastrophic. Those coping with dementia place, supported by a doubling of research
face the fear of an uncertain future; while spending on dementia. We now spend well
those caring can see their loved ones slipping over £60 million on dementia research each
away. year.
Dementia also takes a huge toll on our health Now I want to see this work taken to the next
and care services. With the numbers of level, building on all the brilliant work that’s
people with dementia expected to double in been done in three short years.
the next 30 years and predicted costs likely By 2020 I want England to be:
to treble to over £50 billion, we are facing • the best country in the world for dementia
one of the biggest global health and social care and support and for people with
care challenges – a challenge as big as those dementia, their carers and families to live;
posed by cancer, heart disease and HIV/ and
AIDS.
• the best place in the world to undertake
But though the challenge is great, I believe research into dementia and other
that with the expertise of our scientists, the neurodegenerative diseases.
compassion of our care workers, the stoicism
of the British people – and with real political As we look to the future, it is clear that we
will – we can meet this challenge. all have a part to play. This is not just about
funding from government, or research
That’s why in March 2012 I launched a by scientists, but understanding and
national challenge to fight dementia – an compassion from all of us. Together, we
unprecedented programme of action to can transform dementia care, support and
deliver sustained improvements in health and research.
care, create dementia friendly communities,
and boost dementia research.
Three years on and there has been
significant progress – with more people
now receiving a diagnosis of dementia than
ever before, over 1 million people trained
to be Dementia Friends to raise awareness David Cameron
in local communities, and over 400,000 of Prime Minister
4 Prime Minister’s challenge on dementia 2020
Executive summary 5
Executive summary
We are working harder than ever to People with dementia have told us what is
improve dementia care, to make England important to them. They want a society where
more understanding of dementia, to find they are able to say:1
out more about the condition and to find • I have personal choice and control over
new treatments which delay onset, slow the decisions that affect me.
progression or even cure dementia.
• I know that services are designed around
There is still much more to be done as we me, my needs and my carer’s needs.
look ahead to the next five years and the
challenges that need to be tackled.
1
Outcomes derived from the work of the Dementia
Action Alliance. For more information please see
http://www.dementiaaction.org.uk/6 Prime Minister’s challenge on dementia 2020
• I have support that helps me live my life. More broadly, we want a society where
• I have the knowledge to get what I need. the public thinks and feels differently about
dementia, where there is less fear, stigma and
• I live in an enabling and supportive discrimination; and more understanding.
environment where I feel valued and
understood. We want people to be better informed about
dementia and helped to take action, such
• I have a sense of belonging and of being as through lifestyle changes, to reduce their
a valued part of family, community and personal risk of developing the condition.
civic life.
People want hope for the future, to know
• I am confident my end of life wishes will that real progress is being made towards
be respected. I can expect a good death. preventing and treating dementia, and that
• I know that there is research going on there is a global effort to find a cure.
which will deliver a better life for people This document sets out the areas where
with dementia, and I know how I can the government believes it will be necessary
contribute to it. for society to take sustained action in order
Informed by these outcomes, our vision is to deliver this vision and to truly transform
to create a society by 2020 where every dementia care, support and research by
person with dementia, and their carers and 2020.
families, from all backgrounds, walks of life The Government’s key aspirations are that by
and in all parts of the country – people of 2020 we would wish to see:
different ages, gender, sexual orientation,
ability or ethnicity for example, receive high • Improved public awareness and
quality, compassionate care from diagnosis understanding of the factors which
through to end of life care. This applies to increase the risk of developing
all care settings, whether home, hospital or dementia and how people can reduce
care home. Where the best services and their risk by living more healthily. This
innovation currently delivered in some parts of should include a new healthy ageing
the country are delivered everywhere so there campaign and access to tools such
is more consistency of access, care and as a personalised risk assessment
standards and less variation. A society where calculator as part of the NHS Health
kindness, care and dignity take precedence Check.
over structures or systems. • In every part of the country people
We want the person with dementia, alongside with dementia having equal access
their carer and family, to be at the heart of to diagnosis as for other conditions,
everything we do. Their wellbeing and quality with an expectation that the national
of life must be uppermost in the minds of average for an initial assessment
those commissioning and providing services. should be six weeks following a
There needs to be greater recognition that referral from a GP (where clinically
everyone with dementia is an individual with appropriate), and that no one should
specific and often differing needs including be waiting several months for an initial
co-morbidities. Those with dementia and their assessment of dementia.
carers should be fully involved in decisions, • GPs playing a leading role in ensuring
not only about their own care, but also in the coordination and continuity of care
commissioning and development of services. for people with dementia, as partExecutive Summary 7
of the existing commitment that including those providing care and
from 1 April 2015 everyone will have support to people with dementia and
access to a named GP with overall their carers, having undergone training
responsibility and oversight for their as part of the national implementation
care. of the Care Certificate, with the
• Every person diagnosed with Care Quality Commission asking for
dementia having meaningful care evidence of compliance with the Care
following their diagnosis, which Certificate as part of their inspection
supports them and those around regime. An expectation that social
them, with meaningful care being care providers provide appropriate
in accordance with published training to all other relevant staff.
National Institute for Health and Care • All hospitals and care homes meeting
Excellence (NICE) Quality Standards. agreed criteria to becoming a
Effective metrics across the health dementia friendly health and care
and care system, including feedback setting.
from people with dementia and • Alzheimer’s Society delivering an
carers, will enable progress against additional 3 million Dementia Friends
the standards to be tracked and for in England, with England leading the
information to made publicly available. way in turning Dementia Friends into a
This care may include, for example: global movement including sharing its
• receiving information on what learning across the world and learning
post-diagnosis services are from others.
available locally and how these • Over half of people living in areas that
can be accessed, through for have been recognised as Dementia
example an annual ‘information Friendly Communities, according
prescription’. to the guidance developed by
• access to relevant advice and Alzheimer’s Society working with the
support to help and advise on British Standards Institute.2 Each
what happens after a diagnosis area should be working towards the
and the support available through highest level of achievement under
the journey. these standards, with a clear national
• carers of people with dementia recognition process to reward their
being made aware of and offered progress when they achieve this. The
the opportunity for respite, recognition process will be supported
education, training, emotional and by a solid national evidence base
psychological support so that they promoting the benefits of becoming
feel able to cope with their caring dementia friendly.
responsibilities and to have a life • All businesses encouraged and
alongside caring. supported to become dementia
• All NHS staff having received training friendly, with all industry sectors
on dementia appropriate to their role. developing Dementia Friendly
Newly appointed healthcare assistants 2
More information about the work of the British
and social care support workers, Standards Institute can be found at
http://shop.bsigroup.com/Navigate-by/PAS/8 Prime Minister’s challenge on dementia 2020
Charters and working with between researchers on the use
business leaders to make individual of research resources – including
commitments (especially but not cohorts and databases around the
exclusively FTSE 500 companies). world.
All employers with formal induction • More research made readily available
programmes invited to include to inform effective service models
dementia awareness training within and the development of an effective
these programmes. pathway to enable interventions to be
• National and local government implemented across the health and
taking a leadership role with all care sectors.
government departments and public • Open access to all public funded
sector organisations becoming research publications, with other
dementia friendly and all tiers of local research funders being encouraged to
government being part of a local do the same.
Dementia Action Alliance.
• Increased numbers of people with
• Dementia research as a career dementia participating in research,
opportunity of choice with the UK with 25 per cent of people diagnosed
being the best place for Dementia with dementia registered on Join
Research through a partnership Dementia Research and 10 per cent
between patients, researchers, participating in research, up from the
funders and society. current baseline of 4.5 per cent.
• Funding for dementia research on
track to be doubled by 2025.
• An international dementia institute
established in England.
• 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. This would bring word class
facilities, infrastructure, drive capacity
building and speed up discovery and
implementation.
• 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 cooperationWhy dementia remains a priority 9
Why dementia remains a priority
What is dementia? disease, which is the most common type of
dementia, around 20 per cent have vascular
The term ‘dementia’ describes a set of dementia, which results from problems with
symptoms that include loss of concentration the blood supply to the brain, and many
and memory problems, mood and behaviour people have a mixture of the two. There are
changes and problems with communicating other less commons forms of dementia,3 for
and reasoning. These symptoms occur when example dementia with Lewy bodies and
the brain is damaged by certain diseases, frontotemporal dementia.4
such as Alzheimer’s disease, a series of small
strokes or other neurological conditions such 3
Dementia resources, NHS Health Check
as Parkinson’s Disease. Around 60 per cent 4
Dementia 2014: Opportunity for Change, Alzheimer’s
of people with dementia have Alzheimer’s Society, September 2014.10 Prime Minister’s challenge on dementia 2020
Throughout this document, dementia is receive the treatment, care and support
used as shorthand for this broad range (social, emotional and psychological, as well
of conditions. It is important, however, to as pharmacological) to enable them to better
recognise that no two people with dementia manage the condition and its impact. For
or their carers are the same and individuals example, there is much that can be done to
will have unique and differing needs. help prevent and ameliorate symptoms such
Dementia is a progressive condition, which as agitation, confusion and depression.
means that the symptoms become more
severe over time. People with dementia and The impact of dementia now and
their families have to cope with changing in the future
abilities such as the capacity to make
decisions about major life events as well as Dementia is a growing, global challenge. As
day-to-day situations. the population ages, it has become one of
The reality for many people with dementia the most important health and care issues
is that they will have complex needs facing the world. The number of people living
compounded by a range of co-morbidities. A with dementia worldwide today is estimated
recent survey by Alzheimer’s Society found at 44 million people, set to almost double by
that 72 per cent of respondents were living 2030.6
with another medical condition or disability In England, it is estimated that around
as well as dementia. The range of conditions 676,000 people have dementia.7 Dementia
varied considerably, but the most common has, and will continue to have, a huge impact
ones were arthritis, hearing problems, heart on people living with the condition, their
disease or a physical disability.5 carers, families and society more generally as
Currently, dementia is not curable. However, summarised below:
medicines and other interventions can lessen
symptoms for a period of time and people Mortality
may live with their dementia for many years
• Dementia is now one of the top five
after diagnosis. There is also evidence that
underlying causes of death and one in
more can be done to delay the onset of
three people who die after the age of 65
dementia by reducing risk factors and living a
have dementia.8
healthier lifestyle.
• Nearly two-thirds of people with dementia
Advanced dementia can be very difficult
are women, and dementia is a leading
for the individual and their family and it is
cause of death among women – higher
not always possible at this late stage of the
than heart attack or stroke.9
condition to ‘live well’, but compassionate
treatment, care and support throughout the 6
World Alzheimer’s Report 2014: Dementia and Risk
progression of the condition is essential to Reduction – an analysis of protective and modifiable
factors, Alzheimer’s Disease International, London,
enable people with dementia to one day ‘die September 2014
well’. There is also a great deal that can be 7
Estimated prevalence derived by NHS England from
done to help people with dementia at the Delphi 2007 and subject to review in the light of
earlier stages. If diagnosed in a timely way, Dementia UK Update, second edition, November 2014
8
people with dementia and their carers can Brayne C et al, Dementia before death in ageing
societies – the promise of prevention and the reality,
PLoS Med 2006;3; 10
5 9
Dementia 2014: Opportunity for Change, Alzheimer’s Dementia UK Update, second edition, Alzheimer’s
Society, September 2014. Society, November 2014Why dementia remains a priority 11
Brian Hennell was born in London in June 1938. In 1968 he married June, and they
went on to have three children. It was early in 2005 that Brian seemed to be changing,
developing feelings of lesser wellbeing than he had had before. Mood swings and
irrationality were noticed. At times he was irascible, unreasonable and unkind.
June suspected that the decline in Brian’s feel-good factor was linked to his failing memory.
They couldn’t go on this way and, having run out of self-help options, realized that the time
had come to involve their GP.
In August 2008, June and Brian visited their GP who undertook simple tests on Brian.
By late September 2008, a consultant old age physician was able to report, following a
thorough examination, that in his opinion there was no underlying medical reason for Brian’s
deteriorating condition and that he would benefit from referral to a memory clinic and the
help of a consultant psychogeriatrician. He also ordered a CT head scan which showed
nothing abnormal.
An initial assessment by a memory service followed a month later, but real progress was
made when Brian was seen by the consultant psychogeriatrician.
June’s diary reflects that this was a massive turning point for them and that the specialist was
wonderful. After a three-hour consultation he gave a probable diagnosis of frontotemporal
dementia, practical help such as advising about an Enduring Power of Attorney, considering
their home arrangements, and whether downsizing to live nearer family may be wise.
Thanks to receiving a diagnosis, they could evaluate how to go forward. Having a diagnosis
is really important for many reasons. It stops people worrying that something even more
serious, like a brain tumour, is causing the problem. It provides some light at the end of the
tunnel.
Next steps for the couple included:
• selling their large home of 26 years and downsizing to live near their two sons and their
families in Gloucestershire, at their request, so that they would be on hand to provide
help and support.
• making Enduring Powers of Attorney.
• informing the Driver and Vehicle Licensing Agency (DVLA) of Brian’s difficulties and
receiving permission from them for him to keep driving for another year.
‘Not every day is wonderful and there are certainly some difficult times – but we are
going forward, taking risks and living life to the full. There is still confusion and the need
to make adjustments, to be flexible and learn. Of the future, we both agree that this is an
unknown quantity. We work closely as volunteers with the NHS and many other organisations.
Both Brian and June have given and received positive help from support groups’.
Hello, I’m me! Living well with dementia, Chapter 30, June and Brian Hennell, Oxford University Press12 Prime Minister’s challenge on dementia 2020
Prevalence compares to just over a two-fold increase
in the number of people with dementia
• Dementia mainly affects older people, across the whole UK population in the
and after the age of 65, the likelihood of same time period.11
developing dementia roughly doubles • People with learning disabilities have
every five years.10 a greater risk of developing dementia
• Estimating the prevalence of dementia than other people and usually develop
in England is not an exact science. the condition at a younger age. This is
The Delphi approach is a consensus particularly true of people with Down’s
statement based on experts reviewing syndrome, one in three of whom will
a series of international studies whereas develop dementia in their 50s.12
the Cognitive Function and Ageing II
Study (CFAS II) uses real data from three Fear
populations in England, allowing for more
granular estimates of prevalence, for • People over the age of 55 years fear
example at Clinical Commissioning Group dementia more than any other disease.13
level, and indicates that there are ranges. 39 per cent of over 55s fear getting
• Dementia can start before the age of Alzheimer’s disease the most, compared
65, presenting different issues for the to 25 per cent who worry most about
person affected, their carer and their cancer.
family. People with young onset dementia
are more likely to have active family Care
responsibilities – such as children in
education or dependent parents – and • There are around 540,000 carers14 of
are more likely to need and want an active people with dementia in England.15 It is
working life and income. Family members estimated that one in three people will
are more frequently in the position of care for a person with dementia in their
becoming both the sole income earner, lifetime. Half of them are employed and
as well as trying to ensure that the it is estimated that 66,000 people have
person with young onset dementia is already cut their working hours to make
appropriately supported. time for caring, while 50,000 people have
• The number of people with dementia left work altogether.
from Black, Asian and Minority Ethnic
(BAME) groups in the UK is expected to 11
Dementia does not discriminate, All-Party Parliamentary
Group on Dementia, July 2013
rise significantly as the BAME population 12
Alzheimer’s Society; 2011 Learning disabilities and
ages. It is estimated that there are nearly dementia factsheet
25,000 people living with dementia 13
http://cdn.yougov.com/today_uk_import/yg-archives
from BAME backgrounds in England life-cancerresearch-diseases-150811.pdf
and Wales. This number is expected 14
A carer is somebody who provides support or who
to grow to nearly 50,000 by 2026 and looks after a family member, partner or friend who
needs help because of their age, physical or mental
over 172,000 by 2051. This is nearly illness, or disability. This would not usually include
a seven-fold increase in 40 years. It someone paid or employed to carry out that role, or
someone who is a volunteer.
10 15
Dementia UK: The Full Report, Alzheimer’s Society, Dementia 2014: Opportunity for Change, Alzheimer’s
2007. Society, September 2014.Why dementia remains a priority 13
Economy Hospital care
• Dementia costs society an estimated People with dementia are sometimes in
£26 billion a year, more than the costs of hospital for conditions for which, were it not
cancer, heart disease or stroke.16 for the presence of dementia, they would
• It is estimated that if there was a not need to be admitted. An estimated
disease- modifying treatment from 2020 25 per cent of hospital beds are occupied by
that delayed the onset of Alzheimer’s people with dementia.19
disease by five years, by 2035 there People admitted to hospital who also have
would be 425,000 fewer people with dementia stay in hospital for longer, are more
dementia, with accumulated savings from likely to be readmitted and more likely to
2020 of around £100 billion.17 die than patients without dementia who are
• A recent study estimated that by 2030, admitted for the same reason.20
dementia will cost companies more
than £3 billion, with the numbers of Care homes and care at home
people who will have left employment
to care for people with dementia set to An estimated one-third of people with
rise from 50,000 in 2014 to 83,100 in dementia live in residential care and
2030. Yet if companies increased their two-thirds live at home.
employment rate of dementia carers by Approximately 69 per cent of care home
just 2 per cent over the years to 2030, for residents are currently estimated to have
example by offering more flexible terms of dementia.21
employment, the retention of these skilled
and experienced staff would deliver a People with dementia living in a care
saving of £415 million.18 home are more likely to go into hospital
with avoidable conditions (such as urinary
• Businesses have started to recognise infections, dehydration and pressure sores)
this issue, with one in twelve companies than similar people without dementia.
(8 per cent) having made attempts to
accommodate the needs of a member of
staff with dementia, and more than half Loneliness
(52.1 per cent) considering taking such
action in the future.18 The Alzheimer’s Society Dementia 2014
survey reported that 40 per cent of people
with dementia felt lonely and 34 per cent do
not feel part of their community.22 There is a
similar impact on the carer.
16
Dementia 2014: Opportunity for Change, Alzheimer’s 19
Counting the Cost – Caring for people with dementia
Society, September 2014.
on hospital wards, Alzheimer’s Society 2009
17
Martin Knapp, Adelina Comas-Herrera, Raphael 20
Care Quality Commission, Care update, Care Quality
Wittenberg, Bo Hu, Derek King, Amritpal Rehill, Bayo
Commission, March 2013
Adelaja (2014) Scenarios of Dementia Care: What
21
are the Impacts on Cost and Quality of Life? London: Dementia UK Update, second edition, Alzheimer’s
PSSRU, LSE Society, November 2014
18 22
Cost of dementia to business, Centre for Economic and Dementia 2014: Opportunity for change, Alzheimer’s
Business Research, May 2014 Society, September 2014.14 Prime Minister’s challenge on dementia 2020
Progress on improving dementia care, support and research 15
Progress on improving dementia care,
support and research
Since the launch of the Prime Minister’s Improving health and care
Challenge on Dementia,23 significant progress
has been made in improving health and care • Greater awareness of risk management
for people with dementia and carers, creating and reduction: Public Health England has a
dementia friendly communities, and boosting developing evidence base on risk reduction
dementia research. The Government has via publication of the Blackfriars Consensus.24
also initiated new work to lead international There is agreement that this is an area where
collaboration across the world to accelerate there should be a greater focus and public
efforts to improve the treatment and care of health action. There is some evidence that
those with dementia. the effects of vascular dementia can be
23 24
Prime Minister’s Challenge on Dementia – Delivering The Blackfriars Consensus on promoting brain health:
major improvements in dementia care and research by reducing risks for dementia in the population, Public
2015, Department of Health, March 2012 Health England and the UK Health Forum, May 201416 Prime Minister’s challenge on dementia 2020
minimised or prevented altogether through inspection reports showing how well
a healthy lifestyle. Smoking and obesity, for hospitals care for people living with
example, affect many types of dementia, in dementia.
particular vascular dementia.25, 26 • A better aware, educated and trained
• Improved diagnosis rates: The NHS and social care workforce:
Government set the first ever national Over 437,920 NHS staff have already
ambition on dementia diagnosis that two received Tier 1 (foundation level) dementia
thirds of the estimated number of people training28 and more than 100,000 social
with dementia should receive a diagnosis care workers have received dementia
and appropriate post-diagnosis support awareness training. The College of
by March 2015 so that they can access Social Work is producing good practice
the right care at the right time. In 2010/11 guidance for social workers to improve
in England less than half (42 per cent) of the contribution that they can make in
those estimated to have dementia were achieving best outcomes for people with
being diagnosed. The latest figures show dementia and carers.
this has risen by 17 percentage points to • Supporting better provision of
59 per cent. post-diagnosis support: The
• Greater identification and referral of Government’s mandate to NHS England
dementia in hospitals: In the hospital for 2015/16 includes a commitment to
setting, through NHS England’s Dementia improve diagnosis, treatment and care for
Commissioning for Quality and Innovation people with dementia.29 This is supported
(CQUIN) incentive27 (mandatory from by the Government’s commitment that
April 2013), with around 4,000 referrals a from 1 April 2015 everyone, including
month, it is clear that more people with people with dementia, will be supported
dementia in hospitals are being identified by a named GP with overall responsibility
and assessed. Between April 2013 and oversight for their care. In February
and November 2014 there were 81,110 2014 the Secretary of State for Health set
referrals as a result of the introduction of out his ambition that everyone diagnosed
this CQUIN incentive. with dementia should be offered
• More targeted inspection of dementia high quality support after receiving a
care in hospitals: The Care Quality diagnosis of dementia. This may include
Commission (CQC) has committed to personalised information, a dementia
appointing a new national specialist adviser, access to support services such
adviser for dementia care. They will train as counselling and ongoing specialist
inspectors across all inspecting teams care provided by specialist nurses. To
to understand what good dementia care support GPs and other primary care
looks like so that their judgements are staff, an online Dementia Roadmap was
consistent and robust. These judgements launched in May 2014. The tool provides
will include a separate section in hospital 28
Delivering high quality, effective, compassionate care:
25 Developing the right people with the right skills and
The Lancet Vol 377 March 19, 2011
the right values – A mandate from the Government
26
The Medical Research Council Cognitive Function and to Health Education England, Department of Health,
Ageing Study II, Medical Research Council, July 2013 May 2014
27 29
NHS England Commissioning for quality and innovation Mandate from the Government to NHS England:
(CQUIN): 2014/15 guidance, NHS England, February April 2015 to March 2016, Department of Health,
2014 December 2014Progress on improving dementia care, support and research 17
a framework that local areas can use to has been invested in the creation of
provide local information about dementia. dementia friendly environments in
It is aimed at assisting primary care staff hospitals and care homes. The projects
to more effectively support people with have now been completed and evaluated,
dementia and their carers. People newly with the key findings being issued in
diagnosed with dementia and their carers guidance to the service in the Spring.
are now able to sign up to a new email • Greater support for carers: £400 million
service on the NHS Choices website to has been provided between 2011 and
get essential help and advice to support 2015 so that carers can take breaks
them to adjust to their recent diagnosis. and the Government has introduced
• Greater support for provision of significant legislative changes to better
integrated care: Councils and the support carers, who for the first time will
NHS are now working with one another, have the right to an assessment of their
and are encouraged to work with other eligible needs.31
partners including the independent and • Increased transparency of information
voluntary sectors, to provide better and to drive service improvement: In
more joined up care to local people November 2013, the Government
through the £5.3 billion Better Care Fund. published the Dementia State of the
Around a quarter of the Better Care Fund Nation interactive maps, which for the
plans highlight improving dementia care first time allowed the public to enter their
as one of their priorities, including for postcode to see how local dementia
example providing local access to high services in their area were performing
quality post-diagnosis support. and to view the performance of dementia
• Improving care and support through services across the country. Additional
the National Dementia Action Alliance: dementia information is also available
Leading organisations and groups from on the MyNHS website, which is a new
across health and social care have comparison website tool that allows
come together to provide collective health and social care organisations to
leadership and commitment to act to see how their services compare with
improve the quality of life for people those of others.32
affected by dementia. Since the Alliance
was established in 2010, the number Dementia Friendly Communities
of national member organisations has
increased from 40 to 150.30 The Alliance • Creation of a more dementia friendly
has been leading the way in delivering society: Public Health England and
change across health and social care, Alzheimer’s Society launched a major
for example on improving hospital care TV and online campaign in May 2014,
for people with dementia and support for with the aim of getting one million
carers and each organisation has made Dementia Friends by March 2015. A
its own commitment towards becoming Dementia Friend learns what it is like to
more dementia friendly. live with dementia and then turns that
• Investment in dementia friendly
hospitals and care homes: £50 million 31
Care Act 2014 http://www.legislation.gov.uk/
ukpga/2012/7/contents/enacted/data.htm
30 32
http://www.dementiaaction.org.uk/ www.nhs.uk/mynhs18 Prime Minister’s challenge on dementia 2020
understanding into action – for example, Dementia Friendly Financial Services
by giving time to a local service such as Charter published in 201334 and the
a dementia café or by raising awareness Dementia Friendly Technology Charter
among colleagues, friends and family launched in June 2014.35
about the condition. Since then we
have recruited over 1 million Dementia Better research
Friends and pledges have been made by
corporate partners, non-governmental • World leading, major programmes of
organisations (NGOs) and public sector research and significant investment
organisations to continue to deliver more in infrastructure: We have doubled
Friends.33 research spending on dementia since
• More dementia friendly communities: 2009/10 from £28.2m to £60.2m in
With help from Alzheimer’s Society, 2013/14, and are well on track to achieve
we now have 82 communities across the target of £66m for 2014/15. This
England signed up to the national investment includes major research
Dementia Friendly Communities on issues that matter to people with
recognition process, exceeding the dementia and their carers, such as the
original ambition in the Prime Minister’s world’s largest – £20 million – social
Challenge of 20 by March 2015. These science research programme on
are communities that are working to help dementia. It also includes Dementias
people live well with dementia. Platform UK (DPUK), a £53 million public
• Building a dementia friendly private partnership led by the Medical
generation: With the support of Research Council. The DPUK’s aims are
Alzheimer’s Society and their ambassador early detection, improved treatment and
Angela Rippon, younger people are more ultimately, prevention, of dementias.
educated and aware about dementia • The UK is a key player in the European
than ever before. Hundreds of schools Union (EU) Joint Programme –
have taken part in the dementia friendly Neurodegenerative Disease Research
schools programme and awareness is (JPND):36 This is the most coherent
gathering pace within youth movements international activity in dementia research
around the country. with a research strategy agreed by 28
countries, reaching beyond Europe.
• Action by businesses and industry:
UK scientists are well connected
Businesses and industry have provided
with international programmes, such
strong support for the Dementia Friends
as JPND, Centres of Excellence in
campaign, with major employers such
Neurodegeneration (COEN)37 and the
as Marks & Spencer, Asda, Argos,
Homebase, EasyJet, Aviva and Lloyds
Banking Group committing to creating
34
Dementia Friends from among their staff. Alzheimer’s Society charter for dementia friendly
financial services, Alzheimer’s Society, 2013
A number of sectors have led the way to 35
Alzheimer’s Society with Tunstall Healthcare (June
become dementia friendly by developing ’14), Dementia Friendly Technology Charter http://
their own charters, for example the www.alzheimers.org.uk/site/scripts/documents_info.
php?documentID=2699
36
33 http://www.neurodegenerationresearch.eu/
For further information on Dementia Friends please see:
37
www.dementiafriends.org.uk http://www.coen.org/home.htmlProgress on improving dementia care, support and research 19
Innovative Medicines Initiative (IMI).38 UK • Greater participation of people with
scientists are at the centre of current dementia in research: The number of
efforts to harmonise and accelerate people with dementia involved in studies
research at the global level. The UK is in 2012/13 was 11,859 (3.7 per cent); the
also leading the European Prevention forecast figure for 2013/14 was 13,583
of Alzheimer’s Dementia Consortium (4.5 per cent), more than ever before.
(EPAD) which is focused on creating a 2013/14 was also a record year in terms
novel environment for testing interventions of the number of NHS Trusts involved
targeted at delaying onset of clinical in dementia research (200) and the
symptoms or progression in dementia. performance of dementia studies, with
• The increasing role of the charity over 85 per cent completing on time. ‘Join
sector: The charity sector is becoming Dementia Research’ has been launched
ever more active in galvanising public by the NIHR, Alzheimer’s Research UK
awareness and support for dementia and Alzheimer’s Society to increase
research. Alzheimer’s Research UK the numbers of people participating in
have announced a £100 million research research. This allows patients, carers,
pledge campaign. Alzheimer’s Society the public and professionals to sign up
has also committed to spend at least and take part in high quality studies in
£10 million annually for the next decade dementia research.
on dementia research. • Increased research in care homes:
• Expansion of the dementia research Much needed research in care homes
workforce: We have invested significantly has been advanced through NIHR
in expanding the dementia research Enabling Research in Care Homes
workforce, via National Institute of Health (ENRICH), a network of over 1000
Research (NIHR) Integrated Academic research enabled care homes.
Training for medical researchers, and
via a new scheme led by the NIHR Global action against dementia
Collaborations for Leadership in Applied
Health and Care (CLAHRCs), to train • Leading international collaboration
nurses, social care and allied health across the world: Following the first G8
professionals to become dementia Dementia Summit in December 2013,
researchers. Alzheimer’s Society has the UK has been leading international
also funded a major network of Doctoral efforts to fight dementia. A series of
Training Centres across the UK. The follow up events have taken place
establishment of research infrastructures across the G7 to support progress on
as part of DPUK, such as in imaging, the commitments, which were agreed
stem cell modelling and informatics, upon at the G8 Summit. In June 2014,
as well as long term support through the international community gathered in
Medical Research Council (MRC) Units, London to discuss finance and social
will provide a foundation for attracting impact investment. In September 2014,
basic scientists and bioinformaticians into Canada and France jointly hosted an
the area and help grow capability. event focused on ways to improve
collaboration between academia and
38 industry. In November 2014, Japan
www.mrc.ac.uk/news-events/news/european-boost-to
dementia-research/ hosted an event focused on innovation20 Prime Minister’s challenge on dementia 2020
in care and prevention. In February 2015, Regulators have now, for the first time,
a final legacy event was held in the US, formed a working group to come together
focusing on research. On 16 - 17 March and tackle the challenges involved in
2015, the World Health Organization will developing dementia drugs.
be hosting their first Ministerial Dementia • Launch of the first Global Alzheimer’s
Conference. The event will review the and Dementia Action Alliance: In
progress that has been made under UK May 2014, the launch of the Global
leadership and seek to expand future Alzheimer’s and Dementia Action Alliance
work beyond the G7. (GADAA) brought an important civic
• Establishment of the first World dimension into the Global Action Against
Dementia Envoy and World Dementia Dementia work.40 It seeks to enhance
Council: On 28 February 2014, the Prime global efforts to reduce stigma, exclusion
Minister appointed Dr Dennis Gillings as and fear about dementia, and to harness
the first World Dementia Envoy. Dr Gillings the power of those with dementia, their
has since created a World Dementia carers and the wider community.
Council39 to provide global leadership • Bolstering the human rights of
on the key dementia challenges and the those living with dementia: The UN
council currently has 18 members from Independent Expert on the Human Rights
a number of countries, representing a of Older People, Rosa Kornfield-Matte,
wide range of expertise and disciplines, has demonstrated her commitment to the
including a person living with dementia. programme. The Government is exploring
• Action to accelerate progress ways that we can work with her in order
on dementia research and the to bolster international commitments
development of possible drugs: On to the human rights of those living with
2 December 2014, it was announced dementia.
in the Autumn Statement that the UK • Developing international standards of
Government plans to invest £15 million care for dementia: We are developing
in a public-private fund to stimulate and globally recognised standards reflective
increase investment in dementia research of different care systems, with a focus on
and to progress the development of outcomes for the individual. This will be
possible drugs to treat dementia. achieved through global collaboration and
• World leading collaboration with shared learning. Sustaining and improving
regulators: Following the Prime Minister’s care delivery mechanisms for dementia is
call for an active response to the an international priority.
challenge of drug development and the • The EU Joint Action on Dementia
use of accelerated regulatory pathways, 2015-18: The Joint Action will focus
the Government has been working with on specific areas of the dementia
Raj Long of the Bill and Melinda Gates system: diagnosis and post-diagnostic
Foundation to nurture a strong, close support; crisis and care coordination; the
and frank relationship with regulators. quality of care in residential care settings;
The UK is leading global efforts to bring
together regulators in order to accelerate 40
The Global Action Against Dementia (GAAD)
drug discovery and development. programme is responsible for delivering the Department
of Health’s international commitments working with;
39
http://dementiachallenge.dh.gov.uk/about-the-council/ WHO, G7, EU, OECD, UN, WEF and other partners.Progress on improving dementia care, support and research 21 and dementia friendly communities. The majority of the Joint Action will focus on testing evidence of best practice in localities to enhance understanding of how change and improvement in dementia services can be taken forward in practice.
22 Prime Minister’s challenge on dementia 2020
Transforming dementia care, support and research by 2020 23
Transforming dementia care, support and
research by 2020
To achieve our vision, both supporting those Improving health and care
who are currently affected by dementia, and
looking at how we can improve the health Risk management and reduction
of the population in the future so we can
minimise the number of people developing We now have a developing evidence base
dementia, we need to look critically at where on risk reduction and a consensus that this
we’ve come from and where we need to be is an area where there should be a greater
by 2020. focus and public health action. Messages
on prevention are, however, sometimes
contradictory and can be confusing to the
general public. It is important that clearer
and better targeted information is provided
to people in mid-life about how they can24 Prime Minister’s challenge on dementia 2020
reduce their personal risk of dementia. Public access to tools such as a personalised
Health England’s strategy for the next five risk assessment calculator as part of
years identifies reducing the risk of dementia, the NHS Health Check.
its incidence and prevalence in people aged • A developed global consensus that risk
65-75 years, as one of seven key priorities.41 reduction is a key means through which
This includes action over the next 18 months the global burden of dementia can be
to support people to live healthier lives and reduced. As such, risk reduction will play
manage pre-existing conditions that increase a central role in public health policies
their risk of dementia, such as depression or and campaigns and non-communicable
diabetes. disease actions plans around the world.
By 2020 we would wish to see:
Improving diagnosis
• Improved public awareness and
understanding of the factors which The NHS is making a national effort to
increase the risk of developing dementia increase the proportion of people with
and how people can reduce their risk by dementia who are able to get a formal
living more healthily. This should include diagnosis, from under half, to two-thirds of
a new healthy ageing campaign and people affected or more. The objective for
Peterborough City Council set out to ensure that during an NHS Health Check people
identified at risk of, or diagnosed with dementia, were connected with the services they
required.
In September 2014 estimates suggested Peterborough had over 1,000 people living with
dementia in the community, with only 45% of them having been actually diagnosed. The
Peterborough public health team identified a significant gap in knowledge across health
and social care professionals, regarding the potential for lifestyle changes to reduce the risk
of developing vascular dementia.
The NHS Health Check provided an opportunity to promote Peterborough’s investment in
dementia services, including a new Dementia Resource Centre. It also provided a platform
for addressing the knowledge and skills gap among professionals.
A GP referral pathway from the NHS Health Check to relevant dementia services was
developed for people with concerns around memory loss. This includes signposting to
the Dementia Resource Centre, which provides access to advice and information from the
Alzheimer’s Society, assessment and diagnosis from Cambridgeshire and Peterborough
NHS Foundation Trust (CPFT) NHS Memory Clinic and post diagnostic support groups and
activities for both people with dementia and their carers and loved ones.
Practices are being supported in implementing the dementia component to the NHS Health
Check through a clinical coach (Coronary Heart Disease clinical nurse lead) employed by
Peterborough’s Public Health department. During 2013/14 dementia awareness raising,
as part of the NHS Health Check, made up 25% of the total number of the NHS Health
Checks delivered.
41
From evidence into action: opportunities to protect and
improve the nation’s health, Public Health England,
October 2014Transforming dementia care, support and research by 2020 25
the NHS is to continue to make measurable for example in helping to reach out to seldom
progress towards achieving this in 2015/16.42 heard groups to improve access to services.
This includes ensuring timely diagnosis and
the best available treatments for everyone The South Manchester Memory Service
who needs them, including support for is based on the Gnosall model where a
carers. memory specialist spends a session in a
local GP practice in South Manchester.
Breaking down the stigma of dementia is The initiative has been very well received
important and encouraging diagnosis and by patients and their families and has
post-diagnosis support closer to a patient’s facilitated the early referral and diagnosis of
home can shorten the time from the onset of people with dementia who otherwise would
symptoms to diagnosis. not have been seen. Referrals can be more
It is encouraging that the number of people easily directed toward the appropriate
receiving a diagnosis of dementia has specialist within the memory service and
steadily increased, that there is a greater the diagnosis can be made in primary
awareness of the benefits of diagnosis both care. In addition, by examining carefully the
by individuals and clinicians, and that different coding of memory problems, the numbers
models of diagnosis are being utilised for of patients with a diagnosis of dementia
people at all stages of the condition; for can be increased.
example, diagnosis being undertaken in-drop
Within this context, there are a number of
in clinics in primary care settings, without the
challenges we need to address in the future
need for a referral from a GP.
including improving information on the
This is consistent with the Five Year Forward prevalence of dementia at both national and
View43 for the NHS, which sets out a clear local level, supporting Clinical Commissioning
direction for the NHS moving towards, in Groups to reduce unwarranted variation
the future, new models of integrated care. across the country both with regard to
This means far more care delivered locally diagnosis rates and waiting times for
through greater joint working between health assessments through to diagnosis and, with
and social care, but with some services regard to the latter, in particular, improving the
in specialist centres, organised to support diagnosis of dementia for people of Black,
people with multiple conditions, not just Asian and Minority Ethnic origin and other
single diseases. This is particularly relevant seldom heard groups, for whom the evidence
for people with dementia who often have a shows diagnosis rates are particularly poor.
range of other conditions or co-morbidities
There are real opportunities to improve our
alongside their dementia. To ensure that
understanding of the way dementia affects
services are truly integrated around the
local communities, including identifying and
needs of people, future models will expand
supporting more people with dementia in
the leadership of primary care to include
a timely way, for example by harnessing
nurses, therapists and other community
the knowledge and experience of those
based professionals. These models will also
regularly working with older people in the
harness the critical contribution of volunteers,
community. This spans wider than the
pivotal role of GPs, for example to practice
42
A mandate from the Government to NHS England: nurses, district nurses, health visitors,
April 2015 to March 2016, Department of Health,
December 2014 paramedics, pharmacists, audiologists,
43
Five Year Forward View, NHS England, October 2014 optometrists, podiatrists, home care workers,26 Prime Minister’s challenge on dementia 2020
physiotherapists, occupational therapists, the prevalence of dementia at local and
social care staff and voluntary organisations. national level and using this data to
inform the commissioning and provision
Connecting Communities is an Alzheimer’s of services so that more people with
Society project that sees volunteers from dementia receive a timely diagnosis and
Black, Asian and Minority Ethnic (BAME) appropriate post-diagnosis support.
backgrounds designing and delivering
awareness raising activities that are • An increase in the numbers of people
culturally appropriate for their communities. of Black, Asian and Minority Ethnic
origin and other seldom heard groups
Many different communities are who receive a diagnosis of dementia,
represented in London with different enabled through greater use by health
cultural perspectives on volunteering, professionals of diagnostic tools that are
dementia and local support services. This linguistically or culturally appropriate.
project is addressing recognised issues
around BAME groups’ engagement with • The UK playing a key role in advancing
dementia care services, including: care and support for people with
dementia, through Scotland’s leadership
• low awareness of dementia in BAME of the EU Joint Action on Dementia.
communities.
Support after diagnosis
• low numbers of people accessing early
intervention dementia services and There is greater awareness now about the
instead engaging with support at a importance of support after diagnosis, often
crisis point. termed ‘post-diagnosis support’, both for
improving the individual’s quality of life and
• the diversity of local volunteers who are
for the potential to reduce more costly crisis
not reflective of local populations.
care, for example by avoiding emergency
This project is working to influence London- admissions to hospitals and support in care
wide dementia service commissioning homes. There is also a greater understanding
and set a standard for volunteering good about the broad array of services and
practice. support that this may include, for example
By 2020 we would wish to see: information about available services and
sources of support; an appropriate adviser
• In every part of the country people or care co-ordinator such as a Dementia
with dementia having equal access Adviser to provide advice and facilitate easier
to diagnosis as for other conditions, access to relevant care; Cognitive Stimulation
with an expectation that the national Therapy as a treatment for people with
average for an initial assessment mild to moderate dementia; Admiral Nurses
should be six weeks following a and others to provide specialist support to
referral from a GP (where clinically families.
appropriate), and that no one should
be waiting several months for an initial Social action solutions such as peer support
assessment of dementia. and befriending services can also provide
practical and emotional support to people
• All Clinical Commissioning Groups and with dementia and carers, reduce isolation
Local Health and Wellbeing Boards and prevent crisis. The impact of these
having access to improved data regarding interventions is being robustly tested so thatTransforming dementia care, support and research by 2020 27
evidence on the most effective interventions
Mr Brook is a 73 year old man and he
can be disseminated.
lives with his wife, who is also his carer.
Excellent post-diagnosis support is being Before he visited the local Alzheimer’s
provided in some parts of the country. The Society Dementia Adviser he was not
challenge now is to reduce unwarranted sure where to go for help and admitted
variation and to make those services available feeling concerned. He wanted some more
everywhere, and to ensure that they meet information about dementia but also about
the specific needs of local communities. In his legal rights. Mr Brook and his Dementia
order to make this happen, there needs to Adviser discussed his diagnosis, general
be a better awareness by local health and health and care needs as well as some of
social care commissioners of what services his background and general interests for
are required and which are already being about two hours. The Dementia Adviser
provided, for example by the voluntary recommended the couple attend the
and independent sector. At national level local dementia café for more information
there needs to be better dissemination of about dementia and the adviser agreed to
best practice and what works including continue to provide support.
the effectiveness of different types of post-
Mr Brook was interested in more
diagnosis support, the cost-benefits and how
information about a Lasting Power of
to deliver these services in practice.
Attorney (LPA) so the adviser gave them
People’s experience of living with dementia a copy of the form so they could see
or caring is significantly determined by what was involved. Mr Brook agreed that
characteristics such as their ethnicity, age, the information the adviser provided was
pre-existing disabilities or whether they have relevant, easy to understand and had
a carer living with them. Local commissioners helped him and his wife access services
and providers need to continue to improve both within the Society and externally.
their understanding of the best ways to tailor Mr Brook also felt listened to, involved
post-diagnosis support services to diverse and encouraged to make decisions by the
needs. For example there is evidence that adviser.
shows that BAME communities in particular
Mr Brook felt the two things that he valued
have lower rates of access to these services.
most about the Dementia Adviser service
Looking to the future, we wish to encourage were the provision of information about
greater personalisation in the provision of dementia and the emotional support he
post-diagnosis services – this means building received. In his own words Mr Brook wrote
support around the individual with dementia, about the service:
their carer and family and providing them with
‘I always feel better in myself after the
more choice, control and flexibility in the way
Adviser has left because after discussing
they receive care and support – regardless of
things with her, her explaining, her help
the setting in which they receive it.
and understanding makes me feel better in
myself that day.’You can also read
