Prime Minister's challenge on dementia 2020 - February 2015

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Prime Minister's challenge on dementia 2020 - February 2015
Prime Minister’s challenge on
dementia 2020

                                February 2015
Prime Minister's challenge on dementia 2020 - February 2015
Contents 1

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
Prime Minister's challenge on dementia 2020 - February 2015
2 Prime Minister’s challenge on dementia 2020
Prime Minister's challenge on dementia 2020 - February 2015
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
                                                  •   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
Prime Minister's challenge on dementia 2020 - February 2015
4 Prime Minister’s challenge on dementia 2020
Prime Minister's challenge on dementia 2020 - February 2015
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.
                                                Outcomes derived from the work of the Dementia
                                                Action Alliance. For more information please see
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 part
Executive 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
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
•   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
Why 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
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 2014
Why 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
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 Press
12 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
     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.

     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
     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
     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 2014
16 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
     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 2014
Progress 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
30                                                   32          
18 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
     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                  
     For further information on Dementia Friends please see:
Progress 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
     dementia-research/                                         hosted an event focused on innovation
20 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        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 can
24 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
     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.
       From evidence into action: opportunities to protect and
       improve the nation’s health, Public Health England,
       October 2014
Transforming 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
     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,
     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.
                                                     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 that
Transforming 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.’
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