Luton Dementia Action Alliance's Joint Commissioning Strategy for People Living with Dementia & their Carers Luton 2016 2020 - Working in ...
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Luton Dementia Action Alliance’s
Joint Commissioning Strategy for
People Living with Dementia & their
Carers
Luton
2016 – 2020
Working in Partnership
-1-Table of Contents
Page
1 Foreword 3
2 Executive Summary 5
3 Introduction 5
4 What is Dementia? 6
5 What have we achieved over the last five year? 7
6 Dementia in the UK 8
7 National Policy Context and Drivers for Change 9
8 The I Statements & 2020 Challenge 9
9 Commitment to Carers 11
10 Dementia in Luton 12
11 Headline Messages – Older People 16
12 Headline Messages - Other High Risk Groups 16
13 Where We Would Like To Be 18
14 How We Will Get There 20
15 Integrated Personal Commissioning 21
16 Appendix A Dementia Strategy Working Group Members 23
17 Appendix B Dementia Care Pathway 25
18 Appendix C Work Plan November 2016 26
-2-Foreword
Many of us will know someone who has been affected by dementia, be it a relative, friend or
work colleague. As our population changes and more people live into older age, dementia
will affect many more people each year.
This Joint Commissioning Strategy demonstrates a commitment across Luton to improve
the lives of people with dementia, their carers and their families. We will do this by ensuring
that there are more opportunities for early diagnosis, support and treatment for people with
dementia by developing more and better services to meet the changing needs of those with
dementia. We will ensure that people, families and carers affected by dementia know what
services and support to expect and where to go for information and help.
There is no doubt that ensuring that the aspirations contained in the National Strategy and
the Challenge on Dementia 2020 are delivered on a local level will require a great deal of
work and commitment by those responsible for commissioning and providing services in
Luton.
However, we have every confidence that we, in the Clinical Commissioning Group, Local
Authority, primary and acute care, GP’s, Voluntary and Independent bodies, will rise to the
challenge of delivering the changes needed.
Since the launch of Living Well with Dementia in 2009, dementia has rightly become
recognised as a major national issue affecting 21 million people, or one third of the UK
population.
The scale of the challenge is great, with an estimated 1,636 people currently living with
dementia in Luton. Those living with dementia face great personal uncertainty, both during
its early stages and as their condition progresses. Unfortunately, some people face those
challenges alone but many are supported by family members or friends, who also struggle
with the day to day implications of caring for someone with a progressive condition that can
affect people of all backgrounds and has no known cure.
Whether they have the support of family or friends or not, people with dementia are often
socially isolated, with many unable to say that they feel fully part of their community.
Dementia also poses serious challenges for health and social care services. The condition
is sometimes difficult to identify early, and once a diagnosis is given, it can be difficult to find
the right support. People with dementia face an increased risk of health or care crisis,
sometimes resulting in unplanned admission to hospital, which is often not the best place for
them.
We have worked with people with dementia, their carers and our partners from the statutory,
voluntary and independent sectors to develop specialist services to diagnose and support
people with dementia, with a particular focus on helping people to live well and stay healthy
at home for as long as possible.
As strong as our foundations are, we know that we have more to do. In particular, we must
improve our ability to provide a timely dementia diagnosis and ensure that people with
-3-dementia and their carers get the right support, whatever their individual circumstances.
Beyond services, we must also continue to strive towards becoming more dementia friendly
as a community.
We want a community where people living with dementia and their carers can all say yes to
the ‘I’ statements (page 8), we will know that we have got it right when this happens.
Signed:
Maria Collins
Chair
Luton Dementia Action Alliance
“As a town we’re committed to ensuring Luton is a dementia
friendly community. We’re seeing an increase in the number
of people living with dementia in Luton and it’s important that
we ensure they are confident engaging with their community.
We are committed to working together and encourage you to
join us in meeting this challenge by understanding our
Strategy and working with us to deliver it.
Cllr Aslam Khan
Portfolio Holder - Public Health & Commissioning
-4-Executive Summary
This Joint Commissioning Strategy sets out our vision for the development and
commissioning of services and support for people with dementia and their carers in
Luton over the next four years.
The Commissioning Intentions and Actions set out in the strategy; seek to further
transform individuals’ wellbeing, dementia care and support by continuing to develop
better services. We will make sure that those people, families and carers affected by
dementia know what services and support to expect and where to go for information
and help.
Work Streams will be established which cover the Key Themes set out within the Prime
Ministers Challenge on Dementia 2020, also taking account of the CCG Improvement
and Assessment Assurance Framework. Commissioning Intentions and actions in
respect of each theme have been identified. These will be prioritised taking into account
the timeframes outlined in the attached work plan – November 2016 and the priorities
set by the Dementia Strategy Group, in light of available resources.
The work plan will be refreshed six monthly in response to what people with dementia
and their carers tell us they want and as our knowledge and experience about ‘what
works’ increases. We will see an increasing level of people telling us that their
experience is in line with the ‘I’ statements.
Introduction
The Luton Dementia Strategy 2016 - 2020 has been agreed by the members of the Luton
Dementia Action Alliance.
The Strategy explains our joint approach to ensuring that people with dementia and their
carers are able to live well in Luton. The Strategy will last for four years and will have a
delegated action plan, which will be reviewed quarterly by the Dementia Strategy Group.
The Strategy covers 7 theme areas:
Key themes:
1. Enabling equal, timely access to diagnosis and support.
2. Promoting health and wellbeing.
3. Developing a dementia friendly town
4. Supporting carers of people with dementia
5. Ensuring Excellent Quality of Care
6. Preventing & Responding to Crisis
-5-Supporting theme:
7. Evidence based commissioning – this is an underpinning theme for all commissioning
linked to this strategy and is embedded throughout.
What will good look like?
The National Dementia Strategy sets out a vision for the positive transformation of dementia
services. A transformation that would ensure that all people with dementia have access to
the care and support that they need; where the public and professionals alike are well
informed; where the fear and stigma associated with dementia has been allayed; where the
false beliefs that dementia is a normal part of ageing, and that nothing can be done, have
been corrected; and where the provision and quality of care and support are equitable
wherever people might live.
This Joint Commissioning Strategy sets out our vision for the development and
commissioning of services and support for people with dementia and their carers in Luton
over the next four years. This strategy represents the flow needed to reach the desired
outcomes for people living with dementia and their carers in Luton.
Flow
Inputs Outputs Outcomes
Actions from Themes ‘I’ Statements
work plan (p.26) (p.18) (p.9)
How commissioning and delivering dementia services, as detailed in the work plan which
will take us towards a more person-centred and personalised approach to delivering care
and support. These changes will ensure that our future commissioning is in line both with
the national agenda and NHS policy directive to ‘shift care closer to home’, delivering
increased choice and flexibility in how health and social care needs are met.
What is Dementia?
Dementia is a set of symptoms that may include memory loss and difficulties with thinking,
problem solving or language that affects daily life. A person with dementia may experience
changes in their mood or behaviour1. Some of these are described as Behavioural and
Psychological Symptoms of Dementia (BPSD).
“Dementia is like brain failure. It describes a syndrome: a series of signs and symptoms,
including changes to memory, emotional state and ability to manage.” Alistair Burns,
National Clinical Director for Dementia in England.
There are many different types of dementia, including: -
1
Factsheet: What is Dementia, 2013, Alzheimer’s Society.
-6-• Alzheimer’s disease.
• Vascular dementia.
• Mixed dementia.
• Dementia with Lewy Bodies.
• Rarer causes of dementia, including corticobasal degeneration, posterior cortical
atrophy and Creutzfeldt-Jakob disease.
Dementia is progressive, which means that the symptoms will get worse over time. It can
happen to anyone and there is currently no cure. Some risk factors for dementia, such as
age and genetics, cannot be changed. There are many other factors that increase the risk of
both vascular and Alzheimer’s dementia which could possibly be prevented by making
certain lifestyle changes. This idea is often promoted by the message: ‘What is good for
your heart is also good for your head’. These modifiable risk factors are identified in the
‘Headline Messages’.
What have we achieved over the last five years?
Over the last five years we have been working together to improve the outcomes for people
living with dementia and their carers. The list below details what we believe are our main
achievements. The order of importance is different from each person’s/organisations
perspective, with this in mind there is no order of importance, as each achievement has its
own merits depending on your viewpoint.
We launched the Luton Dementia Action Alliance (LLLDAA) in 2014 and it is now a
well established LLDAA with over 40 organisations signed up as members;- each
working on their own action plans to make Luton a Dementia Friendly Town. This is
the largest Action Alliance within the Eastern Region and other towns/communities
continually look to us for support and guidance in establishing their own alliances.
We are continuing to develop strong partnerships across Luton and create dementia
friendly workforces.
Luton met the national dementia diagnosis target in July 2016 and the CCG is
continuing to meet with stakeholders in nursing homes, GP’s, the Luton & Dunstable
hospital and the mental health teams to ensure that this is maintained.
The ELFT (East London Foundation Trust) Memory Assessment Service had an
‘outstanding inspection’ in 2016 and have kept their MSNAP (Memory Services
National Accreditation Programme) Accreditation over the last four years, which
ensures that everyone has access to assessment, care and treatment on the basis of
need, and that they receive a service that is person-centered and takes into account
their unique and changing personal, psychosocial and physical needs.
Keech Hospice are working towards becoming a dementia friendly hospice and have
begun working with people living with dementia and their families, starting to bridge
the gap between dementia and palliative care.
We were successful in gaining funding from NHS England to work with carers of
people living with dementia to examine what causes carers stress and what could
-7-help to prevent it and also to begin coproducing services to address these issues.
The outcomes from this work are embedded within the work plan.at point 4a – page
36.
We have produced our own local ‘Luton Dementia Guide’, a guide written for carers
by carers, which has been welcomed by people living with dementia, their carers and
professionals alike. This guide aims to answer all the most common questions and
acts as a comprehensive pre and post diagnostic support tool. This guide has been
much acclaimed and used as a template for other areas to produce their own guide.
We have hugely increased the amount of post diagnostic support available to people
living with dementia and their carers in Luton. Some of this has been achieved via
formal commissioning, some through the members of the LLLDAA working towards
making their services more dementia friendly and offering new services and activities
and some has grown organically, though identifying gaps and organisations rising to
the challenge to fill them.
These include;- several singing café’s’, singing for the brain, Music 24, a dementia
café, young onset dementia group, cognitive stimulation sessions, a dementia library,
dementia swimming sessions, day time and evening carers groups, CrISP (Carers
Information and Support Programme), increased numbers of support workers
through the Alzheimer’s Society, offering one to one support at the Memory
Assessment Service, GP’ surgeries, L&D Hospital and individual referrals, as well as
general awareness raising and targeted work with BME communities.
The Luton & Dunstable hospital have developed their own dementia strategy and
have made good progress in developing and improving their services for people with
Dementia and their carers over the past two years, following the appointment of a
Dementia Nurse specialist in 2013.
Dementia in the UK
There are an estimated 670,000 people in the UK acting as primary carers for people with
dementia. Most people with dementia live at home and many do not receive dementia
specialist services. Dementia is challenging for both people with the condition and those
that care for them, but it is possible to live well with dementia.
Research shows that there are an estimated 835,000 people in the UK who have dementia,
including 700,000 people who live in England2. This means that 1 in every 14 of the
population aged 65 years and over has dementia. There are over 40,000 younger people
(65 years of age or below) with dementia. The total number of people with dementia in the
UK is expected to increase to over one million by 2025.
A majority (69.0%) of people in care homes have dementia or memory loss. The prevalence
of dementia among residents of care homes is slightly higher in women than men at all
ages, estimated 62.7% for males and 71.2% for females.
2
Dementia UK: Update Second Edition, The Alzheimer’s Society,
November 2014.
-8-The total cost of dementia to society3 in the UK is £26.3 billion, with an average cost of
£32,250 per person, which includes:
• £4.3 billion spent on healthcare costs
• £10.3 billion spent on social care (Publically and privately funded)
• £11.6 billion contributed by the work of unpaid carers of people with dementia
Unpaid care accounts for 74.9% of the total cost for all people with dementia living in the
community.
National Policy Context and Drivers for Change
There are many policies and drivers for change which we need to take into account when
developing and implementing this Joint Commissioning Strategy:
Living well with Dementia: A National Dementia Strategy (DoH 2009)
Prime Ministers challenge on dementia 2020
Prime Ministers challenge on dementia 2020 - Implementation plan
Transforming models of care for PLWD - 2012
The Care Act 2014
CQC – Cracks in the pathway 2014
The Triangle of Care 2013 – Carers Trust
PAS 1365:2015 – BSI Code of practice for the recognition of dementia-friendly
communities in England
National Institute of Clinical Excellence (NICE) Clinical Guidelines - Dementia:
support in health and social care 2010
National Institute of Clinical Excellence (NICE) Clinical Guidelines – Dementia –
Independence & Wellbeing April 2013
A summary of the above guidance suggests that a comprehensive strategy is required to
meet all their demands. The working group has taken note of this and actions to meet these
have been developed within the work plan.
There is no doubt that ensuring that the aspirations contained in the Challenge on Dementia
2020 are delivered on a local level will require a great deal of work and commitment by
those responsible for commissioning and providing services in Luton.
The ‘I’ statements & 2020 Challenge
The ‘I’ statements from The National Dementia Strategy – ‘Living Well with Dementia 2009’
continue to inform the strategic priorities within the Prime Ministers challenge on dementia
20204 and therefore our Joint Commissioning Strategy 2016 – 2020
3
As above
4
Prime Minister’s challenge on dementia 2020 - DoH
-9-People with dementia have told us what is important to them – they want a society where
they are able to say:5 -
I have personal choice and control over the decisions that affect me
I know that services are designed around me, my needs and my carers’ needs
I have support that helps me live my life
I have the knowledge to get what I need
I live in an enabling and supportive environment where I feel valued and understood
I have a sense of belonging and of being a valued part of family, community and civic
life
I am confident my end of life wishes will be respected
I can expect a good death
I know that there is research going on which will deliver a better life for people with
dementia, and I know how I can contribute to it
These outcomes are tested on a regular basis within Luton and the information gained from
this testing helps to inform the work of the Luton Dementia Action Alliance. The latest check
revealed that 27% of carers’ and 36% of people living with dementia are able to say yes to
these statements in Luton, we want to see a 10% increase in these figures annually.
Informed by these outcomes, the aspirations of the Government are that they would wish,
by 2020, to see:
Improved public awareness and understanding of the factors which increase the risk of
developing dementia and how people can reduce their risk by living more healthily
Equal access to diagnosis as for other conditions, with the national average for an
initial assessment should be six weeks following a referral from a GP
playing a leading role in ensuring coordination and continuity of care for people with
dementia, and everyone will have access to a named GP with overall responsibility
and oversight for their care
Every person diagnosed with dementia having meaningful care following their
diagnosis, which supports them and those around them, with meaningful care being in
accordance with published National Institute for Health
All NHS staff having received training on dementia appropriate to their role
All hospitals and care homes meeting agreed criteria to becoming a dementia friendly
health and care setting
Alzheimer’s Society delivering an additional 3 million Dementia Friends in England,
with England leading the way in turning Dementia Friends into a global movement,
including sharing its learning across the world and learning from others. Currently we
have over 3,550 dementia friends in Luton and our target is to increase this by 25%
annually
Over half of people living in areas that have been recognised as Dementia Friendly
Communities, according to the guidance developed by Alzheimer’s Society working
with the British Standards Institute6
5
Outcomes derived from the work of the Dementia Action Alliance. For more information please see
http://www.dementiaaction.org.uk/
6
PAS 1365:2015 - Code of practice for the recognition of dementia-friendly communities in England
- 10 - All businesses encouraged and supported to become dementia friendly, with all
industry sectors developing Dementia Friendly Charters and working with business
leaders to make individual commitments (especially but not exclusively FTSE 500
companies). All employers with formal induction programmes invited to include
dementia awareness training within these programmes. Locally to link. with the LBC
business team’s business engagement programme to support businesses to become
dementia friendly
National and local government taking a leadership role with all government
departments and public sector organisations becoming dementia friendly and all tiers
of local government being part of a local Dementia Action Alliance
Dementia research as a career opportunity of choice with the UK being the best place
for Dementia Research through a partnership between patients, researchers, funders
and society
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
Cures or disease modifying therapies on track to exist by 2025
More research made readily available to inform effective service
Open access to all public funded research publications, with other research funders
being encouraged to do the same
Increased numbers of people with dementia participating in research, with 25 per cent
of people diagnosed with dementia registered on Join Dementia Research and 10 per
cent participating in research, up from the current baseline of 4.5 per cent
We have highlighted (in grey) those outcomes above that we will be working towards or
contributing to, in Luton as part of this strategy.
Commitment to Carers
The Care Act 2014 means important changes for carers from 1 April 2015:
• Carers have the same legal rights as those for whom they care
• Local authorities have a duty to assess carers who appear to have eligible needs
• Local authorities must consider a carers overall wellbeing, which includes physical,
mental and emotional well-being, participation in work, education and training, and
social and economic well-being
• Carers who meet eligibility criteria will have a right to support to meet their eligible
needs
• Carers should be supported to retain and gain employment
• Carers will have new rights to be consulted on the cared for person
• Local authorities will have a duty to provide information and advice
The Act requires local authorities to provide information and advice relating to care and
support locally, to include:
• Training – learning and skills for caring
- 11 -• Coping – with routine caring responsibilities
• Managing work – how the workplace takes into account carers responsibilities
• Local support and services – knowing where to go close to home
• Benefits and finance – assistance and independent advice available
• Information on assistive technology – devices and equipment that improve daily living
This work plan within this strategy ensures that these obligations are met by both
commissioners and providers of services for carers of people living with dementia
Dementia in Luton
Modifiable risk factors of dementia, such as diabetes, drinking, cholesterol, depression,
hypertension, low educational attainment, obesity, inactivity, smoking etc. are not covered in
this strategy but it must be noted that if there is a marked action on these; dementia
prevalence could be reduced with a significant impact on vascular dementia - i.e. reduction
in smoking would have an impact on the occurrence of vascular dementia.
An estimated total of 1,676 people in Luton are living with dementia – July 2016
- 12 -Work is currently ongoing to support practices with low diagnosis rates, using various
training tools within GP’s protected learning time.
The latest (2013) Office for National Statistics (ONS) Mid-Year Population Estimate for
Luton was 208,0007. The council considers this to be an under-estimate and the population
to be around 210,800 in 2013.
Luton’s population is projected to grow significantly between 2011 and 2031, with the latest
forecast projecting growth of 20% in the next 20 years. Key drivers for this are high levels
of natural growth (more births than deaths) and international in-migration.
The table below shows a summary of population projections for Luton. Key changes over
the next 20 years are the:
Population of Luton is projected to increase by 41,500, a rise of 20%
School age population (5-15 year olds) is projected to increase by 7,100, a rise of
23%
Retired population is projected to increase by 11,400 people, a rise of 40%
Very elderly population is projected to increase by 2,550 people, a rise of 91%
Luton population projections under 65 from 2011 to 2031
Population aged 18-64, projected to 2030
2014 2015 2020 2025 2030
People aged 18-24 22,500 22,800 22,300 22,700 25,000
People aged 25-34 36,800 37,000 38,600 39,000 38,300
People aged 35-44 27,900 28,400 31,400 33,800 34,800
People aged 45-54 25,900 26,100 25,700 26,000 28,300
People aged 55-64 18,500 18,800 21,700 23,300 22,900
Total population aged 18-
64 131,600 133,100 139,700 144,800 149,300
Total population - all ages 211,100 213,700 226,300 237,100 246,900
Projected population 65+ for Luton, 2015 -2030
Population aged 65 and over by age and gender, projected to 2030
2015 2020 2025 2030
Males aged 65-69 3,700 3,800 4,400 5,100
Males aged 70-74 2,800 3,300 3,400 3,900
Males aged 75-79 2,500 2,400 2,800 3,000
Males aged 80-84 1,700 1,900 1,900 2,300
Males aged 85-89 900 1,100 1,300 1,400
Males aged 90 and over 400 500 800 1,000
Total males 65 and over 12,000 13,000 14,600 16,700
7
Office for National Statistics. Annual Mid-year Population Estimates, 2013.
- 13 -Females aged 65-69 3,800 3,800 4,400 5,100
Females aged 70-74 3,000 3,500 3,500 4,000
Females aged 75-79 2,900 2,700 3,100 3,200
Females aged 80-84 2,100 2,400 2,300 2,700
Females aged 85-89 1,300 1,500 1,800 1,800
Females aged 90 and over 800 1,000 1,200 1,600
Total females 65 and over 13,900 14,900 16,300 18,400
Total male & Female 25,900 27,900 30,900 35,100
Trends in the ONS projections clearly show some stability in the numbers of working age
population and an increase in the elderly population. As age is a major risk factor for
dementia the population profile of an area will eventually have an impact on the numbers of
people with dementia in that area.
The incidence of premature cardiovascular disease (CVD) mortality has been consistently
higher in Luton than the East of England and all England averages over the last 10 years.
This is particularly important, as there is a link between incidences of CVD and vascular
dementia. Damage to the vascular system increases with age, and generally progresses
faster in men than women, in those with a family history of vascular disease and in some
ethnic groups. Targeting identified risk factors for CVD which will also have an impact on the
incidence of vascular dementia.
Luton is ethnically diverse, with approximately 55% of the population being of Black and
Minority Ethnic Origin (BME), all people who are not White British. The ethnic composition
of Luton fits a model known as ‘super-diversity’ in which there is an increasing number of
BME communities within the population each with its own needs and cultures. Luton has a
long history of migration into the area both from elsewhere in the UK and overseas. There
have been long-standing African-Caribbean, Bangladeshi, Indian, Irish and Pakistani
communities in Luton as a result of international migration. More recently, the migration
patterns have become more complex. In the mid-1990s, the opening of the University of
Luton (now the University of Bedfordshire) caused rapid growth in the student population of
the town. This growth has been sustained with an increase in numbers of overseas
students.
In the mid-2000s, the expansion of the European Union led to a significant increase in
migration from Eastern European countries, particularly Poland and Lithuania. There has
also been in-migration from African countries such as the Congo, Ghana, Nigeria, Somalia
and Zimbabwe. There is also a Turkish population in Luton. More recently, National
Insurance Registration data has demonstrated further increases in international migration
with Romanians moving to the town after the change in law allowing them the right to work
in the UK at the beginning of 2014. Analyses of translation service data also highlighted the
levels of diversity in the town by identifying over 120 languages or dialects being spoken by
residents. This provides corroborating evidence of Luton being super-diverse8.
Having a large and diverse BME community presents particular issues for Luton in both
estimating the current and future prevalence of dementia and ensuring awareness of
8
Luton Joint Strategic Needs Assessment
- 14 -dementia within BME communities and in developing and providing culturally appropriate
diagnosis and support services.
There are a number of issues which may underpin Luton’s present position:
Research indicates that there are differences in the prevalence and recognition of
dementia among different ethnic groups. In particular, higher rates have been found
among Black Caribbean older people9
In some communities a lack of understanding and the stigma attached to mental
illness may prevent families from seeking help. This may particularly be the case
where the community culture places great emphasis on self reliance
Language barriers may prevent people from receiving information about what is
available and how to access help. Even where printed information in minority
languages is available, this may not help those older people who have a limited level
of literacy in their own language
Unfamiliarity with social care services, which may exist in minority cultures, might
prevent people from requesting services or lead to misunderstandings about their
role. Medical services, which are better understood, and free from stigma, are often
considered more acceptable than social care services
Dementia in BME elders is not necessarily recognised and research has shown that
in general Minority Ethnic groups are at far more risk of misdiagnosis and delayed
treatment than other Mental Health Users
Standard diagnostic tests for dementia, or depression, may not be culturally
appropriate and may lead to inaccurate diagnosis. New culturally appropriate tests
are currently being developed and are being integrated onto the assessment process
The lack of a professional interpreting service may make it difficult for assessors who
do not speak the older person's preferred language to conduct an effective
assessment. The use of friends or family members as interpreters may compromise
confidentiality or influence the assessment. LBC has a contract with Luton
Interpreting and Translation Service, so this should never be the case, but this is not
widely used at present
There may be little awareness of older people's mental health issues within black and
minority ethnic communities, for instance, some Asian languages do not have an
equivalent word for dementia and symptoms may therefore be unrecognised or
misunderstood
Older people affected by dementia, who were once able to speak English as a
second language, may lose the skill as their memory deteriorates. Even with good
language skills, cultural differences may result in meaning and nuance being lost
Lower uptake of social care services by older people from minority ethnic
communities may lead to demand being overlooked or underestimated by
commissioners
These and other issues may go some way to explaining why a range of indicators in Luton
do not mirror those figures predicted by national prevalence data.
9
Social Care Institute of Excellence – Briefing no 35
- 15 -Headline Messages – Older People
Estimated number of new cases of dementia each year in Luton
People aged 65 and over predicted to have dementia, by age and gender, projected to 2030
2014 2015 2020 2025 2030
People aged 65-69 predicted to have dementia 91 94 95 110 128
People aged 70-74 predicted to have dementia 156 159 186 189 217
People aged 75-79 predicted to have dementia 316 316 298 344 361
People aged 80-84 predicted to have dementia 443 453 513 500 594
People aged 85-89 predicted to have dementia 400 439 517 617 633
People aged 90 and over predicted to have dementia 329 357 447 592 770
Total population aged 65 and over predicted to have
dementia 1,735 1,817 2,055 2,352 2,703
http://www.poppi.org.uk/index.php
These tables clearly show that the number of people with dementia in Luton will rise over
the next fifteen years, with the number increasing by over 60%.
NB: - It must be noted here that research undertaken by Professor Carol Brayne – Director of Cambridge Institute of Public
Health, which shows that dementia in the population, when ageing is taken into account, is significantly lower than it was
20 years ago. (Lancet 2013) Has not been applied to the above figures as to date there has been no new projections
based on this – we have approached Public Health England to help us to provide more accurate projections and we will
update these figures when this is available.
Headline Messages - Other High Risk Groups
Younger People with Dementia
Luton’s relatively young age profile means that projected rises in dementia are not as steep
as the UK average would indicate. The numbers of younger people with dementia are
much smaller, however the needs of younger people with dementia may be different
because they may be in work at the time of diagnosis, have dependent children or family, be
more physically fit and active and have heavy financial commitments, such as a mortgage.
Future service models need to be user-led and will vary depending on the needs of the
individual and other circumstances. Commissioners will explore whether a dedicated service
may be required or if it is possible to meet needs through the innovative use of existing
resources. Services for younger people with dementia will need to be flexible and
responsive to the needs of individuals and span organisational boundaries through
partnership working.
- 16 -Those with Learning Difficulties
There is strong national evidence10 that people with learning disabilities are at increased
risk of developing dementia as they age, compared with others without a learning disability,
although the figures vary according to how the diagnosis is made. About 1 in 5 people with
a learning disability who are over the age of 65 will develop dementia. People with learning
disabilities who develop dementia generally do so at a younger age. This is particularly the
case for people with Down's syndrome: a third of people with Down's syndrome develop
dementia in their 50s.
The symptoms of dementia in people with Down's syndrome are broadly similar to those
seen in the general population, although there are some differences. Changes in behaviour
and personality (e.g. becoming more stubborn, irritable or withdrawn) or loss of daily living
abilities are common. Memory loss, the most common early symptom of Alzheimer's
disease among older people generally, is seen less often as an early symptom in people
with Down's syndrome. This may be because most people with Down's syndrome will
already have poor short-term memory.
LBC offers services for older people with a learning disability and for people with early onset
dementia
Alcohol Related Dementia
The National Alcohol Strategy does not make reference to alcohol-related brain damage or
dementia but it is estimated that up to 10% of dementias are related to alcohol.
Services to support people with alcohol-related dementia frequently fall between standard
dementia services and alcohol services. Traditional dementia services are unlikely to meet
the needs of an individual with problematic alcohol use, particularly if the individual is still in
an acute phase of drinking.
Alcohol related brain injury (ARBI) is an increasing problem and there are thought to be
about 30-40 people who have ARBI in Luton, many of whom make high demands on
community and acute health care services, as well as a small group of younger people who
are placed in residential or nursing homes. These placements are often age inappropriate,
but age specific services which meet their needs are not currently available.
Alcohol-related dementia and ARBI remain areas for further research as well as service
development. Health and Social Care commissioners will work with colleagues responsible
for commissioning services for these groups on a local and regional level to assess local
needs and develop appropriate services to meet these needs. – Work plan (1n)
10
https://www.alzheimers.org.uk/site/scripts/documents_info.php?documentID=103
- 17 -Where We Would Like to Be?
Since the launch of the Prime Ministers Challenge on Dementia11 significant progress has
been made in improving health and care for people with dementia and carers, creating dementia
friendly communities, and boosting dementia research nationally.
To achieve our local vision for people with dementia and their carers in Luton, and to ensure
that we are delivering for people against the ‘I’ statements, our work will focus on 6 key themes
with a supporting theme and work plan.
Key themes:
1. Enabling equal, timely access to diagnosis and support.
a. Ensure Luton continues to meet the national target for dementia diagnosis of
66.9% registered on QOF register - Luton currently meets this target –
September 2016
b. An expectation that the average time for an initial assessment should be six
weeks following a referral from a GP (where clinically appropriate)
c. Improved quality of contacts with patients and carers from diagnosis,
throughout their dementia experience
d. An increase in the numbers of people of Black, Asian and Minority Ethnic origin
who receive a diagnosis of dementia, enabled through greater use by health
professionals of diagnostic tools that are linguistically or culturally appropriate
e. GPs playing a leading role in ensuring coordination and continuity of care for
people with dementia, as part of the existing commitment that from 1 April 2015
everyone will have access to a named GP with overall responsibility and
oversight for their care
f. Every person diagnosed with dementia having meaningful care following their
diagnosis, which supports them and those around them including; -
i. receiving information on what post-diagnosis services are available
locally and how these can be accessed
ii. access to relevant advice and support to help and advise on what
happens after a diagnosis and the support available when living with
dementia
iii. every newly diagnosed person with dementia and their carer receiving
information on what research opportunities are available and how they
can access these through ‘Join Dementia Research’
g. All people with a diagnosis of dementia being given the opportunity for
advanced care planning early in the course of their illness, including plans for
end of life
h. A right to stay for relatives when a person with dementia is nearing the end of
their life, either in hospital or in the care home
i. All relevant social care staff working with adults and older people accessing
social care services being supported to spot the early signs and symptoms of
11
Prime Minister’s Challenge on Dementia – Delivering major improvements in dementia care and research by 2015,
Department of Health, March 2012
- 18 -dementia and helping people with the condition to access high quality care and
support
j. All relevant staff able to signpost interested individuals to research via ‘Join
Dementia Research’
k. People with dementia, including people with more severe dementia, are able to
express their views about what is important to their quality of life12
l. All LBC Housing staff to have completed dementia awareness training
appropriate to their role and the level of their interaction with people living with
dementia and their carers
m. Access to suitable housing with the appropriate levels of care and support
n. Explore the need and provision of services for people with alcohol related
dementia and brain injury
2. Promoting health and wellbeing.
a. Improved public awareness and understanding of the factors which increase
the risk of developing dementia and how people can reduce their risk by living
more healthily
3. Developing a dementia friendly town
a. Luton to be a Dementia Friendly Community, according to the BSI guidance,
working towards the highest level of achievement under these standards
b. All hospitals and care homes meeting agreed criteria to becoming a dementia
friendly health and care setting13
c. Support the Alzheimer’s Society to deliver an additional 3 million Dementia
Friends in England. Locally to Increase dementia friends & champions by 25%
annually, Luton currently has over 3,500 dementia friends.
d. All businesses encouraged and supported to become dementia friendly.
Locally we have 30 business signed up and intend to increase this by 100%
annually
4. Supporting carers of people with dementia
a. Carers of people with dementia being made aware of and offered the
opportunity for respite, education, training, emotional and psychological
support so that they feel able to cope with their caring responsibilities and to
have a life alongside caring
b. More employers having carer friendly policies and practice enabling more
carers to continue working and caring. This is detailed within the work plan
(p.38)
5. Ensuring Excellent Quality of Care
a. A continued significant reduction in the inappropriate prescribing of
antipsychotic medication for people with dementia and less variation across the
country in prescribing levels14
12
The Alzheimer’s Society, My name is not dementia: People with dementia discuss quality of life indicators,
Toby Williamson, Head of Development and Later Life at the Mental Health Foundation.
13
PAS 1365 Code of practice for the recognition of dementia-friendly communities in England
14
https://www.nice.org.uk/guidance/qs30
- 19 -b. All people with a diagnosis of dementia being given the opportunity for
advanced care planning early in the course of their illness, including plans for
end of life
c. All relevant health and care staff who care for people with dementia being
educated about why challenging behaviours can occur and how to most
effectively manage these
d. All NHS staff having received training on dementia appropriate to their role -
newly appointed healthcare assistants and social care support workers,
including those providing care and support to people with dementia and their
carers, having undergone appropriate training as part of the national
implementation of the Care Certificate, with the Care Quality Commission
asking for evidence of compliance with the Care Certificate as part of their
inspection regime. An expectation that social care providers provide
appropriate training to all other relevant staff
6. Preventing and Responding to Crisis
a. Fewer people with dementia being inappropriately admitted to hospital as an
emergency through better provision of support in community settings, which
enables people to live independently for longer
b. Ensuring people with dementia are appropriately supported if they ring 111 or
999 through sharing of care plans throughout urgent care services
c. Increased numbers of people with dementia being able to live longer in their
own homes when it is in their interests to do so, with a greater focus on
independent living
d. Increase access, awareness & knowledge of the benefits of assistive
technology to those living with dementia
Supporting theme:
7. Evidence based commissioning
What does our evidence tell us?
a. It is important and possible to commission services that are based on strong
local evidence of need, using evidence based models of care and involving
people with dementia and their carers’ in design and production and this
should be the basis of how all commissioning is undertaken
How We Will Get There
Objective 14 of the National Dementia Strategy requires each community to develop and
publish a Joint Commissioning Strategy for Dementia. The Strategy we have developed in
Luton and the work that flows from it will be based on the following principles. We will:
Place people with dementia and their carers at the centre of all commissioning activity
to ensure that they have the support and services they require
Take positive steps to ensure their voices are heard, providing advocacy and support
where necessary
Ensure equity and equality in the planning, commissioning and delivery of services
Ensure that people’s legal and human rights are safeguarded, promoted and
maintained
- 20 - Commission services that promote and maintain independent functioning
Empower people by putting systems and services in place to ensure they retain control
and choice over their lives
Work in partnership, and collaboratively, across the commissioning community.
Build quality and dignity into every service
The Strategy and work plan were produced under the direction of the Dementia Strategy
Working Group, as a draft for consultation and are subject to a twelve week period of public
consultation and scrutiny. Membership of the Dementia Strategy Working Group drew from
all sectors; the membership of this group can be found in Appendix A.
The progress will be monitored by Luton Dementia Action Alliance and will report progress
to the Joint Strategic Commissioning Group and Luton’s Health & Wellbeing Board.
Work Streams for each priority theme area will be established and Commissioning
Intentions and Actions in respect of each objective have been identified. (See work plan
attached)
These Commissioning Intentions and Actions will be developed and monitored through the
governance arrangements noted above and will be prioritised by the Dementia Strategy
Group (taking account of available resources).
These Commissioning Intentions and Actions will be fully integrated with relevant QIPP
work streams and will be evaluated through a range of performance and quality indicators -
including the NICE Dementia Quality Standards.
Integrated Personal Commissioning (IPC) Definition
The Integrated Personal Commissioning (IPC) Programme is designed to test how to link
health and social care funding at the individual level for people with complex, long-term
needs.
What are the objectives of IPC?
The objectives of the IPC programme are to use an integrated health and social care budget
at the individual level to:
• improve the quality of life of people with complex needs and their carers;
• enable people with complex needs, their families and their carers to achieve
important goals through greater involvement in their own care so that they are able to
design support around their needs and circumstances
• prevent crises in people’s lives that lead to unplanned hospital and institutional care
by keeping them well and supporting self-management, and
- 21 -• improve integration and quality of care, including better user and family experience of
care
It is argued that the programme is likely to be of particular benefit to people with the most
complex needs, including:
• Children and young people with complex needs, including those eligible for
education, health and care plans
• People with multiple long-term conditions, particularly older people with frailty
• People with learning disabilities with high support needs, including those who are in
institutional settings or at risk of being placed in these settings
• People with significant mental health needs, such as those eligible for the Care
Programme Approach
What outcomes does IPC aim to achieve?
Through IPC people with complex needs will have:
• A better quality of life and enhanced health and wellbeing
Measured by NHSE evaluation tools/Patient Activation Measurement (PAM)
• Fewer crises that lead to unplanned hospital and institutional care
Linked data from health to show activity. System needs to be unblocked to
allow linked data and sharing to measure this outcome. Plans in place with
CCG/LBC/CSU?
• Enhanced experience of care through better coordination and personalisation of
health and social care
This is the NHSE IPC team expected outcomes
- 22 -Appendix A - Dementia Strategy Working Group Members
Name Job Role Organisation
Dan McKeavney Service Manager Age Concern Luton
Collette McKeavney Director Age Concern Luton
Connie Sharp Dementia Support Manager Alzheimers Society
Sian Gilleard LLLDAA Co-ordinator Alzheimers Society
Ayla Patton Services Manager – Beds & Luton Alzheimers Society
Michelle Pilkington Community Matron Cambridgeshire Community Services
Tracy Fitzsimmons Service Manager Cambridgeshire Community Services
Jeff Solomons Carer Carer
Valerie Conroy Carer Carer
Elaine Fountain Carer Carer
Sherone Phillips Services Manager Disability Resource Centre
Dr.Johan Schoeman Consultant Psychiatrist – MAS Lead East London Foundation Trust
Clare Warren Dementia Nurse Specialist East London Foundation Trust
Caroline Faulkner Business Manager Keech Hospice Care
Yvonne Weldon Nurse Dementia Specialist Luton & Dunstable University Hospital
Ewelina Syperek Business Support Administrator Luton Borough Council
Diane Walsh Carers Development Officer Luton Borough Council
Kimberly Radford Commissioning Manager Luton Borough Council
Dr. Anthea Robinson GP Lead Clinician Luton Clinical Commissioning Group
- 23 -Katrina Anderson Interim Asst. Director – MH & Personalisation Luton Clinical Commissioning Group
Mary Bennis Personalisation Lead Commissioning Manager Luton Clinical Commissioning Group
Maria Collins Chair Luton Dementia Action Alliance
Debbie Gillard Communications Manager Quantum Care
Sue Harrison Head of Learning & Dementia Development Quantum Care
Huma Stone Service Development Manager Quantum Care
Bernard Conroy Patient Service User
- 24 -Appendix C - Luton Basic Care Pathway
ELFT
Luton Borough Council
ELFT–(East
ELFT London
East London COORDINATION OF CARE
Foundation Trust&
Foundation Trust Across care providers
Psychiatric Liaison
& psychiatric Effective Communication
Team. Pre-Bereavement
liaison team. Planning & Support
Advanced Care Planning
Individualised
Care Plan for the
Dying person
Support and
palliative care
Advanced
Care Planning
- 25 -Work Plan – November 2016
The ‘I’ statements have been detailed here with an identifying letter, each action within the work plan is referenced with
the statement that it is contributing towards delivering.
A. I have personal choice and control over the decisions that affect me.
B. I know that services are designed around me, my needs and my carers’ needs.
C. I have support that helps me live my life.
D. I have the knowledge to get what I need.
E. I live in an enabling and supportive environment where I feel valued and understood.
F. I have a sense of belonging and of being a valued part of family, community and civic life.
G. I am confident my end of life wishes will be respected.
H. I can expect a good death.
I. I know that there is research going on which will deliver a better life for people with dementia, and I know how I can
contribute to it.
1 Enabling equal, timely How Who When ‘I’
. access to diagnosis and Statement
support.
a Ensure Luton continues to A plan to be devised to ensure that all people living in nursing/care homes CCG March B,C,E
meet the national target or in a high risk group to be assessed for cognitive functioning/dementia 2017
for dementia diagnosis of using DOH recognised tools e.g. GP’s to check all residents on prescribed
66.9% registered on QOF Antipsychotic medication or high number of falls etc.
register - Luton currently
A Quality Improvement project focussed on Memory Clinic review ELFT March B,E
meets this target -
processes and systems is currently underway, working with service users 2017
September 2016
To detail and implement outcomes from project. ELFT TBA
Explore to evaluate that cognitive function is assessed at annual health CCG December B,C,E
checks and that hospital or nursing home recommendation to check 2016
dementia diagnosis query are being followed up
Clinical leads from CCG to offer support to GP’s to diagnose people with CCG Clinical Leads December B
dementia where needed 2017
- 26 -Recruit a Dementia specialist nurse advisor for GP clusters to identify and LCCG July 2017
B,E
advise on dementia CCS
Raise awareness of best practice guidance – 10 key steps to improving ELFT – Dementia November B,E
timely diagnosis to all health & Social Care providers conference 2016
http://dementiapartnerships.com/wp-content/uploads/sites/2/DPC-
resource-pack-v3.pdf
Already achieved
Timeframes are included in ELFT contract (Objective 2.1)
GP’s paid for numbers diagnosed on QOF register (Objective 2.2)
st
ELFT carry out an initial paper based assessment within 72hrs of referral (1 contact with patient/carer)
Hospital screen at-risk patients and alert GP for follow up where appropriate - Hospital Dementia Nurse Specialist will
give advice to GP’s in discharge letters
Diagnosis origin captured
Individualised care planning by GP for every patient diagnosed with dementia
Alzheimer’s Society have a campaign ‘Worried about your memory’ running at GP surgeries
Psychiatric Liaison at L&D hospital can direct people directly to ELFT MAS
b An expectation that the Investigate current blockage with IT system, ICE so that ELFT can read ELFT, GP, CCG June 2017 B
average time for an initial blood results from GP and hospital system.
assessment should be six
weeks following a referral Develop plan to resolve blockages with It systems ELFT/CCG November B
from a GP (where 2017
clinically appropriate)
c Improved quality of
contacts with patients and Devise a tiered framework to ensure that training is at the appropriate LBC November B,E
carers from diagnosis, standard for all people coming in to contact with PLWD and their carers – 2017
throughout their dementia linked to individual organisations own training plans
experience
d An increase in the Provide dementia awareness and appropriate post diagnostic support to all Alzheimer’s & Ongoing B,C,E.F
numbers of people of members of the community, ensuring that this adapted for people from all LDAA
Black, Asian and Minority BME communities
- 27 -Ethnic origin and other Initiate target screening for BME with MMSE culturally appropriate GP December B,E
seldom heard groups who questions Steve Malusky 2016
receive a diagnosis of ELFT
dementia, enabled
through greater use by Encourage BME VCS groups to join dementia community forums,
health professionals of conferences. Posters and on websites promoting in different languages in LBC – Public April 2017 B,D,E,F
diagnostic tools that are the community and GP practices to raise awareness health
linguistically or culturally
appropriate. 1. Population breakdown of diagnosis within BME communities in
comparison to the local profile to enable targeted work to take place ELFT July 2017 B.E.F
where appropriate
2. Mapping of BME tools for dementia diagnosis
Link with schools agenda to educate younger people within BME
communities working alongside schools & colleges, including dementia Alzheimer’s Priority for B,C.E.F
friends awareness sessions 2017
Information raising at local venues and events e.g. community places, local Alzheimer’s/All Ongoing B,C.E.F
radio stations, posters in culturally specific shops, TV loop messages in
suitable languages and places of worship etc. with a particular focus on
BME communities
Already achieved
LBC funding Alzheimer’s Society to work with SE Asian communities to raise awareness
Many initiatives to increase awareness within BME communities have taken place during the last 3 years
Luton dementia Conference 2014 had a specific emphasis on raising awareness, both for professional and the public
ELFT MAS uses interpreters and appropriate tools to assess cognition
e GPs playing a leading role GP’s to offer through their MDT’s an integrated anticipatory care plan – ELFT & Ongoing B,C,D,E
in ensuring coordination with the support of special interest GP, and mental health services - “Right GP’s/CCS/LCCG
and continuity of care for time, right place, right people”15
people with dementia, as
15
https://www.gov.uk/government/publications/the-right-people-in-the-right-place-with-the-right-skills
- 28 -part of the existing
commitment that from 1 GP’s using Luton Dementia Directory to support and advise patients and GP’s Ongoing B.C.D.E.F
April 2015 everyone will their carers with memory problems
have access to a named
GP with overall Already achieved
responsibility and
oversight for their care. 4 GP clusters in place
Every practice to offer an annual mental , physical wellbeing review to all PLWD & carers
All patients in Luton have access to a named GP with overall responsibility and oversight for their care
At Home First’ Intensive case management approach established with MDT co-ordination . To support personalised
care planning and advanced care planning.
f Every person diagnosed Those people who agree to be signposted to the Vol sector to receive Alzheimer’s Ongoing A,C,D,E,F.
with dementia having follow up checks on a six monthly basis G,H
person centred care
following their diagnosis, Person centred plans to be shared with the PLWD and/or carers and other GP’s Ongoing A,C,D,E,F.
which supports them and involved providers G,H
those around them
December A,C,D,E,F.
including; -
Luton Dementia Directory to be updated electronically annually and LBC/LCCG/ 2017 G,H
reprinted when necessary ACL
i receiving information
on what post-diagnosis Already Achieved
services are available
locally and how these can L& D Hospital have a Dementia Nurse Specialist
be accessed. MSNAP achieved for ELFT Memory Assessment Service
ii access to relevant A twelve week post diagnostic follow up from MAS Nurse dementia specialist is
advice and support to help Luton Dementia guide
and advise on what Alzheimer’s Society present at MAS and further follow up from Alzheimer’s if requested
Appointments with Dementia support workers form the Alzheimer’s Society offered at GP surgeries, home visits and
happens after a diagnosis
the L7D hospital
and the support available
Age Concern Luton providing support re;- benefits advice
when living with dementia.
iii linking to the Directory
of Service on 111…
g All people with a Training programme delivered by End of Life LIG to be adapted to include End of Life LIG - December A.G,H
diagnosis of dementia advanced care planning for people living with dementia and their carers. LCCG 2016
being given the
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