APPENDIX - 1
Luton Dementia Action Alliance’s Joint Commissioning Strategy for People Living with Dementia & their Carers
Luton
2016 – 2020
Working in Partnership
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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
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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
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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
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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 and Luton’s Health & Wellbeing Bord.
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
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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.
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• 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
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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.
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3 The total cost of dementia to society 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
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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
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• 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
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• 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
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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 Peopl e 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.
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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
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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
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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.
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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
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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
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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
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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
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• 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
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• 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
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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 LDAA 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 Officer 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
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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
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Appendix C - Luton Basic Care Pathway
ELFT Luton Borough Council
ELFTELFT – (EastEast LondonLondon COORDINATION OF CARE Foundation Trust Trust & • Across care providers Psychiatric Liaison psychiatric • Effective Communication • Pre-Bereavement
Planning & Support • Advanced Care Planning
Individualised Care Plan for the Dying person
Support and palliative care
• Advanced Care Planning
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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
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Recruit a Dementia specialist nurse advisor for GP clusters to identify and LCCG July 2017 advise on dementia
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) • ELFT carry out an initial paper based assessment within 72hrs of referral (1st 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
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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
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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 • happens after a diagnosis Appointments with Dementia support workers form the Alzheimer’s Society offered at GP surgeries, home visits and 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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opportunity for advanced Raising awareness of personalised care planning to include advance care LBC/LCCG July 2018 A.G,H care planning, legal planning with all diagnosed persons and for 30% to have an advanced medico advice, advocacy care plan that has been reviewed in the last 12 months- to be in place by early in the course of their 2018. illness, including plans for end of life, choice of place All staff involved in the early stages of patients pathway to be supported to All organisations July 2017 A.G,H to die. have confidence and competence to engage in end of life conversations – training programmes delivered by members of the End of Life LIG in line with the End of Life training plan
Already achieved
• At Home first’ Intensive case management approach in place • Anticipatory care planning is ongoing • Future driving and lasting power of attorney addressed at diagnosis through the Memory Assessment Service • Age Concern Luton address legal issues following an agreed referral from the Memory Assessment Service h A right to stay for relatives A survey needs to be undertaken to assess the level of implementation End of Life LIG - February A.G,H when a person with across Luton and reported back to the Dementia Strategy group for follow CCG 2017 dementia is nearing the up if necessary end of their life, either in hospital, or in the care home. • Influence residential and nursing homes to be aware of the right to stay LBC – Contracts June 2017 A.G,F,H for relatives team • Investigate contractual agreements with nursing & residential homes
Investigate the potential to deliver a dementia room in the hospital, a L&D Hospital March A.G,F,H quieter space will cause less distress whilst patient is in end of life stages 2017
Already achieved
• L & D Hospital - carers can stay overnight when deemed necessary, but there are no individual facilities to offer the carer. End of life patients are often offered a side room facility when available • Quantum Care provide a right to stay for carers
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i All relevant social care • All front line LBC staff to undertake Dementia Friends Awareness LBC August B.C.D.E.F staff working with adults session 2017 and older people • All adult social care staff to undertake ½ day dementia awareness LBC accessing social care training – LBC services being supported • All ASC staff involved on an operational level with people living with LBC to spot the early signs and dementia to undertake full day dementia training - LBC symptoms of dementia and helping people with Already achieved the condition to access high quality care and • LBC has ½ day Dementia awareness training and dementia friends awareness sessions available to all staff support. Aspiration for all • ELFT social workers have online training provided staff to achieve tier 1 & 2 • L & D Hospital provide Tier 1 training to all staff training • NVQ standard training being delivered in care homes and to other care providers j All relevant staff able to Raise awareness with all staff of the opportunity to participate in research LDAA November I signpost interested and appropriate signposting. 2016 individuals to research via ‘Join Dementia Research’. Publicise through the Luton Dementia Conference 2016 and the LDAA and LDAA November I - A collaboration of encourage organisations and individuals to join. 2016 various research projects which have joined Dissemination of information to all service providers. LDAA November I together to offer a choice 2016 of opportunities for people to engage in research, Already achieved both national and locally • Specialist Dr’s and Dementia Nurse specialist within ELFT are signposting to research • Alzheimer’s Society signpost to research k People with dementia, 1. Research into the various methods of communication and LDAA July 2017 A,B,C,D,E,F including people with engagement and their benefits to be undertaken and shared with ,I more severe dementia, partners are able to express their views about what is 2. Raise awareness of methods of communication available to all LDAA November important to their quality partners 2017 of life l All LBC Housing staff to • All staff to complete Dementia Friends Awareness Sessions LBC - Housing December A.,B,C,D,E, have completed dementia 2016 F awareness training • All front line housing staff will complete the LBC ½ day dementia LBC - Housing
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appropriate to their role awareness training August and the level of their 2017 interaction with people • All staff who work frequently with people living with dementia will LBC - Housing living with dementia and complete the full day LBC Dementia training for operational staff December their carers 2017 m Access to suitable • LBC Housing to complete an Older Persons Housing Strategy ensuring LBC -Housing January A.,B,C,D,E, housing with the that the needs and commissioning intentions for people living with 2017 F appropriate levels of care dementia and their carers are clearly defined and support n Explore the need and • Investigate level of service provision in this field LBC November A, ,C,D,E,F provision of services for • Identify needs 2017 people with Alcohol • Produce options appraisal related dementia and brain injury
2 Promoting health and How Who When ‘I’ wellbeing. Statement a Improved public Share Link to ‘reduce your risk of dementia’ booklet for LDAA website to LDAA December A,D,E awareness and all members of the LDAA to share with their own organisations and 2016 understanding of the customers factors which increase the risk of developing https://www.alzheimers.org.uk/site/scripts/documents_info.php?documentI dementia and how people D=102 can reduce their risk by living more healthily. Information raising at local venues and events e.g. community places, local All Ongoing All radio stations, posters in culturally specific shops, TV loop messages in suitable languages and places of worship etc.
Link to public health wellbeing strategies and LBC Comms. strategy– and All develop an action plan to implement guidance LBC – Public December https://www.gov.uk/government/publications/health-matters-midlife- Health – Strategy 2017 approaches-to-reduce-dementia-risk/health-matters-midlife-approaches-to- Group reduce-dementia-risk
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Already achieved
• Alzheimer’s Society attend local health events and promote via social media • LDAA provides promotion though all its partners’ • ELFT check physical health at every post diagnostic visit • Dementia Friends Awareness sessions talks about living health
3 Developing a dementia How Who When ‘I’ friendly town Statement a Luton to be a Dementia Luton Dementia Action Alliance Objectives: - LDAA Ongoing - A,B,C,D,E,F Friendly Community, Reviewed , according to the BSI • To develop a fully operational, fit for purpose and sustainable Luton Annually guidance, working Dementia Action Alliance to support Luton to become a dementia towards the highest level friendly town of achievement under these standards, • Full user involvement in the development of the LDAA & Dementia Friendly Community Project.
• Respectful and responsive businesses and services.
• Challenge stigma and build understanding.
• Accessible community activities.
• Practical support to enable engagement in community life.
• Ensure an early diagnosis.
• Community based solutions.
• Consistent and reliable travel options.
• Easy to navigate environments.
Establish a regular forum for people affected by dementia, from diverse Alzheimer’s Society November A,B,C,D,E,F communities in Luton to be involved in shaping a Dementia Friendly 2016 Community Produce shortened BSI guidance for members to use. LDAA January B
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Development 2017 Officer Already achieved
• LLLDAA is well established and is following BSI guidance – it is an ongoing process b All hospitals, nursing • Contract to be amended to ensure that all practices are members of GP / LDAA/LCCG 2020 A,B,C,D,E,F homes and care homes, the LLLDAA by 2020 with support from Alzheimer’s – linked to hospices and GP training. practices meeting agreed criteria to becoming a • Developing a skilled and knowledgeable workforce, delivering person L&D Hospital Ongoing A,B,E,F dementia friendly health centred care to improve clinical outcomes, and care setting.
• All Luton BC care providers to be part of the LDAA. LBC/LDAA March A,B,C,D,E,F 2017
• Support Alzheimer’s Society work to develop closer links with care LBC/ CCG/LDAA December A,B,C,D,E,F homes by producing a short promotional guide on care homes and the 2017 LLLDAA
• The trust to become a dementia friendly organisation, with L&D Hospital 2020 A,B,C,D,E,F environments and processes that cause no harm, developing partnership working.
Already achieved
• L& D has developed a 3 year Dementia strategy which is aligned with the National Dementia Action Alliance, which includes redevelopment of the site to include some dementia friendly design principles’, A monthly assessment audit of the environment and enhanced staff training at least once a month • Quantum Care have tiered training for every staff member from point of entry, with all homes within the Luton area up to standard with the environment. There is a dedicated lead for ‘Rhythm of Life’ - a staff development tool. • Keech Hospice Care has agreement at Board level to work towards becoming a dementia friendly environment. As the result of a grant some modifications have been made and other will be implemented as any repairs or refurbishment takes place. c Support the Alzheimer’s • Increase dementia friends & champions by 25% annually, Luton LDAA Ongoing A,B,C,D,E,F Society to deliver an currently has over 3,500 dementia friends. additional 3 million • All allied health professionals (i.e. podiatry, dental, optical services)
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Dementia Friends in to become dementia friends, currently we have over 3,500 in Luton. England. • All housing providers to become dementia friends • Increase the number of dementia friends from the BME and LGBT communities • Encourage people affected by dementia to become Champions
Already achieved
• Over 1.5 million dementia friends nationally • 3,500 dementia friends in Luton • Quantum Care deliver to all staff and local schools and supermarkets • 37 champions in Luton • L&D Hospital has 2 champions delivering to admin staff and volunteers • Stopsley Singing Cafe is encouraging new volunteers and members to become Dementia Friends, and is offering to run sessions immediately after Singing Cafe for those interested. d All organisations and • All members of the LDAA to promote the LDAA in a positive light and LDAA members Ongoing A,B,C,D,E,F businesses encouraged become dementia friendly businesses and supported to become • To link with the LBC business team’s business engagement LBC December dementia friendly, programme to support businesses to become dementia friendly 2016
• Produce a promotional pack to give out to organisations and LDAA businesses. LDAA March • Increase business membership by 100% annually 2017 1. 2 Trained Dementia Friends Champions Active Luton December A,B,C,D,E,F 2. All contracted staff undertake the Dementia Friends Awareness course 2017 3. To work with ASA to undertake ‘Understanding dementia in the leisure environment’ training and deliver dementia friendly swimming
Existing and new volunteers to become DF and staff to become DC Alzheimer’s society Ongoing A,B,C,D,E,F
A,B,C,D,E,F As a member of the LDAA, ' Keech Hospice commit to continuing to be an Keech Hospice Ongoing active member of the LDAA and delivering against their action plan. Care
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1. To work with Stopsley High School and receive pupils to volunteer at Stopsley Singing December A,B,C,D,E,F Singing Cafe on Thursdays. Sian Gilliard from LLLDAA is currently café 2016 helping us to re -connect.
2. To work collaboratively with two local Churches, Stopsley Baptist Ongoing Church and St Thomas's, to combine together to take part in Stopsley Singing Dementia Friends Information Sessions for staff and members. Cafe Already achieved
• L & D hospital has two Alzheimer’s society trained Dementia champions who can support Dementia friend’s programme. • 30 local organisations signed up locally • Keech Hospice Care are delivering dementia friends sessions to London Luton Airport as their Charity Partner
4 Supporting carers of How Who When ‘I’ people with dementia Statement a Carers of people with December A,B,C,D,E,F dementia being made Develop a peer group for people living with dementia and their carers’. DRC 2017 aware of and offered the (Integrated Personalised Commissioning – IPC – Peer Support Group) opportunity for respite, education, training, B,C,D,E emotional and Continue to run CrISP 1 & CrISP 2 courses every 4 months for carers. Alzheimer’s Society 4 monthly psychological support so (Carers’ Support and Information Programme) that they feel able to cope with their caring B,C,E responsibilities and to Raise awareness that support workers offer psychological support, advice Alzheimer’s Society Ongoing have a life alongside and guidance when requested caring.
Co-production – carers A,B,C,D,E.F responses; - in order of Investigate current respite provision for the various types of respite, i.e. LBC March priority Sitting service, overnight respite, including both commissioned and self- 2017 Priority One - respite funded. i. Respite, sitting service and overnight Investigate processes, including for eligibility, charging and booking for LBC March A,B,C,D,E.F care/respite respite 2017
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Inform the market and re-shape provision as necessary LBC December A,B,C,D,E.F 2017
A,B,C,D,E.F ii. support to allow time Include an investigation of respite types – this may require a piece of work LBC December for household chores on shaping the market 2017
Priority Two – dedicated B,C, contact A piece of work to raise awareness of the role of the Alzheimer’s Society LCCG/LBC March i. Dedicated contact for and also to investigate what is missing from this 2017 support ii. Dedicated contact link to groups iii. Dedicated contact – carer journey
B,E Priority Three – good Work with quality assurance team to ensure the quality of commissioned LBC December quality support services – quarterly report to commissioners implement NICE QS 1&30 2016 i. Care agencies ii. Support from GP iii. Carer support from Agree – what good looks like and raising awareness of carers of what they LBC March B.E agencies should expect – See NICE QS 2017 iv. Family support Training required to empower carers to ensure a care & support plan is LBC Ongoing B.E, agreed and delivered
Ensure that there are robust complaints processes in place LBC March B,E 2017
Already achieved
• Co-production project with carers to inform on the triggers that cause carer stress and breakdown and what support, would help reduce this. – This project informs the actions of this priority within the wok plan.
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b More employers having B,C,E,F carer friendly policies and Ensure that all partners carer friendly employment policies and practices in LBC/LCCG/ELFT/K December practice enabling more place, linked to dementia friendly bussiness’s eech Hospice 2017 carers to continue working Key areas we are looking into include: and caring. a) HR processes and procedures b) Local engagement c) Internal support d) Information provision e) Training and awareness f) Customer and client support g) Physical environments
Work with other organisations to ensure that carer friendly employment LDAA December B,C,E,F policies and practices are in place as above 2018 c Use existing day services Work with ASC to design a project to assess this. LBC July 2017 B,D to assess deterioration in condition & carers stress over time
5 Ensuring Excellent How Who When Quality of Care a A continued significant 1. An audit to be undertaken to identify any inappropriate prescribing. ELFT July 2017 A,H reduction in the inappropriate prescribing 2. Develop an action plan to reduce any inappropriate levels of of antipsychotic prescribing, if it exists medication for people with CCG audit of care homes for anti psychotic drugs awareness giving. LCCG Ongoing A,H dementia. Sessions
A,H Evidence shows prescribing of these drugs by GP’s has increased. Pharmacy dept. Ongoing Need to ensure that all GP’s and palliative care teams are educated about the appropriate use of medication and review. ELFT
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Already achieved
• Prescribing LCCG pharmaceutical teams regularly visit nursing homes to check antipsychotic medication+- • ELFT completed POMH-UK Topic 11c (PC Psychiatrists) audit to limit the prescribing of anti-psychotic medication, which achieved a massive reduction • ELFT actively seek to reduce or stop anti-psychotic medication and keep a register of all recipients • GP prescribing has been influenced by local practice through more education and support for carers which has changed practice • L&D Hospital has strategic objective for medicines management in place and their dementia strategy stipulates low use of anti-psychotic medication b All people with a • Increased use of advanced care plans (owned by patient) – see 1g of Quality teams LBC December G.H.I. diagnosis of dementia this work plan – Luton Palliative & End of Life Care Implementation & CCG, GP’s and 2017 being given the PLan CCS opportunity for advanced care planning early in the • Link advanced care planning prompts to Gold Standard templates for LCCG December G,H,I course of their illness, End of Life 2018 including plans for end of Already achieved life. • At Home first ‘Intensive case management approach in place • Anticipatory care planning is ongoing • Future driving and lasting power of attorney addressed at diagnosis through the Memory Assessment Service • Age Concern Luton address legal issues following an agreed referral from the Memory Assessment Service c All relevant health and Availability of training around managing challenging behaviour to be LCCG / March B,C,E care staff who care for investigated and shared with commissioners and all organisations Alzheimer’s society 2017 people with dementia being educated about why challenging behaviours All LBC operational staff in day centres, reablement, extra care and LBC October B,C,E can occur and how to supported living to receive a minimum training standard of: - 2017 most effectively manage i. dementia friends awareness these. Ensure that carers ii. dementia awareness training – ½ day also have the opportunity iii. working with and support people with dementia – full day to access support & B,C,E training to manage 2 x Virtual dementia tour (VDT) dates to be commissioned for carers and LCCG / LBC Annually challenging behaviours. professionals
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Already achieved
• 2 x Virtual dementia tour dates have been commissioned for carers and professionals for the last 3 years – 180 attendees • L & D hospital licensed to deliver the VDT to all its staff and education programme developed to include care skills – tier 1 & 2 • LBC staff all have access to dementia awareness training • Education programme in place – can be accessed by various organisations • Tier 1 National Framework in place where appropriate • Tier 2 to be achieved the relevant Health & Care staff • Quantum Care – Care certificate, level 2 & 3 dementia awards – Pathway to care • ELFT – dementia care course delivered for all new care staff • CCS- 3 x Virtual dementia tour dates this year offering free places to local care home and home care staff • CCS – all relevant staff complete Tier 1 and Tier 2 training
6 Preventing and How Who When ‘I’ Responding to Crisis Statement a Fewer people with Undertake an evaluation of admissions and attendances to hospital – help LCCG – Unplanned January dementia being to understand gaps in service provision across the system. care team. 2017 B,C,E inappropriately admitted to hospital as an Develop commissioning intentions as appropriate. emergency through better Already achieved provision of 24/7 support in community settings, • MDT’s established within GP clusters which can discuss patients with dementia with a view to developing which enables people to personalised care plans aimed at reducing inappropriate hospital admissions live independently for • ELFT have an urgent referral scheme for older people in place which takes referrals from GP’s to give advice and longer. prevent acute admissions • Age Concern Luton provide a meet and greet scheme to support people being discharged from hospital and prevent re-admissions. Patients registered with a • CCS Falls Service / Team in place – co location with Ambulance service , focus on prevention, good links and Luton GP, in the last year integration in place with other local provide services. of Dementia pathway can • DRC train personal assistants to care certificate which includes dementia access the My Care Co- • GP have a high risk register for those with dementia and other comorbidities that could contribute to hospital ordination Team (MCCT) admissions. Service, at Keech Hospice • At Home First ‘Intensive case management approach established with 4 GP clusters Care. • ‘At Home First’ Integrated Rapid Response established to support people to remain at home and avoid inappropriate hospital admissions. Being rolled out across the 4 GP clusters.
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b Ensuring people with Work with there are no pathways to falls service, ambulance service and LCCG November B,E dementia are 111 service linking to ensure right pathway is followed. – this needs to be 2017 appropriately supported if resolved they ring 111 or 999 through sharing of care plans throughout urgent care services c Increased numbers of Ensure that there are appropriate levels of dementia specific supported LBC Ongoing A,B,C people with dementia living within the community i.e. – Extra care & sheltered accommodation being able to live longer in their own homes when it Already achieved is in their interests to do so, with a greater focus on • LBC review of Extra Care Housing has been completed to inform future needs analysis independent living. • Assistive technology more readily available • Personalisation agenda has given people the ability to employee Personal Assistants d Increase access, • Link into the BHDA (beds & Herts Dementia Alliance) community LDAA / LBC July 2017 B,C,D,E awareness & knowledge subgroup assistive technology mapping of the benefits of assistive LBC December technology to those living • LBC to set up a stakeholder group to inform telecare strategy 2016 with dementia LBC • LBC to develop pathways to ensure people are easily able to access telecare services
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