Joint Commissioning Strategy People with Dementia Luton 2010-2015

Working in Partnership

Table of Contents Page 1 2 3 4 5 6 7 8 9 1 0 1 1 1 2 1 3 1 4 1 5 1 6 Foreword Executive Summary Introduction What is Dementia? Dementia in the UK The Role of Prevention and Self Help National Policy Context and Drivers for Change Overview Where We Are Now Dementia in Luton Headline Messages Older People Headline Messages - Other High Risk Groups Where We Would Like To Be How We Will Get There Our Priorities and Our Commissioning Intentions The Economic Challenge Joint Commissioning Intentions/Actions Appendix A Dementia Strategy Group Members Appendix B - Work Stream Group Members Appendix C Dementia Care Pathway Appendix D Timelines for National Objectives Consultation Process - Questions 3 4 4 5 5 6 6 8 9 11 12 14 15 16 16 17 22 23 25 26

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 the spread of information and knowledge about dementia and by seeking to remove the stigma that is often attached to it. We will ensure 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 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 NHS, Local Authority, Voluntary and Independent bodies, will rise to the challenge of delivering the changes needed. Signed: Pam Garraway Corporate Director Housing and Community Living Signed: Angela McNab Chief Executive NHS Luton

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 five years. The Commissioning Intentions and Actions set out in the strategy, seek to improve information and knowledge about dementia in order to remove the stigma that is often attached to it and, by developing better services, to ensure that there are more opportunities for early diagnosis, support and treatment. 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 have been established which cover the Objectives set out within the National Dementia Strategy, and Commissioning Intentions and Actions in respect of each Objective have been identified. These will be prioritised taking into account the timeframes outlined in the National Dementia Strategy; the priorities set by the Dementia Strategy Group and in light of available resources. This strategy represents a work in progress. It documents a transitional stage in commissioning dementia services which will take us towards a more person-centred and personalised approach to care and support. The strategy will be refreshed each year in response to what people with dementia and their carers tell us they want and as our knowledge and experience about what works increases. It is also worth noting that this strategy will be implemented during a time of financial constraint which will mean resources will be stretched and investments in services and support systems will need to demonstrate, more than ever, that key outcomes for people with dementia and their carers are being delivered in an effective and efficient manner.

Introduction
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 five years. This strategy represents a transitional stage in commissioning dementia services 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 4

closer to home, delivering increased choice and flexibility in how health and social care needs are met.

What is Dementia?
The term dementia is used to describe a collection of symptoms, including a decline in memory, reasoning and communication skills, and a gradual loss of skills needed to carry out daily activities. These symptoms are caused by structural and chemical changes in the brain as a result of physical diseases such as Alzheimers disease - which is the commonest form of dementia. The second commonest form of dementia, called Vascular Dementia, occurs when the brains blood circulation is repeatedly disrupted by strokes leading to significant accumulated damage to brain tissue and function. It is thought that many factors, including age, genetic background, medical history and lifestyle, can combine to lead to the onset of dementia. The main risk factor for most forms of dementia is advanced age, with prevalence roughly doubling every five years over the age of 65. One in 14 people over 65 and one in 6 people over 80 have a form of dementia. Dementia is a progressive condition. This means that the symptoms become more severe over time. Understanding how this progression happens can be useful in helping someone with dementia anticipate and plan for change. Treating the symptoms of dementia and offering appropriate support services can make a significant difference to the lives of people with dementia, their family and carers.

Dementia in the UK
The most recent relevant source of data on the prevalence of dementia is Dementia UK: A report into the prevalence and cost of dementia Alzheimers Society (2007). This report was jointly written by the Personal Social Services Research Unit (PSSRU) and the Institute of Psychiatry. The report estimates that 700,000 people in the UK have dementia. This population is expected to significantly increase over the next half-century. By 2021 there will be a 38% increase in this number and by 2051 this figure will rise by 154%. Old age is the largest risk factor for dementia and prevalence doubles every decade after 65. Some 68% of all people with dementia are over 80 and most will have other conditions and illnesses that result in physical frailty or impairment. Women with dementia outnumber men by 2:1. In the UK an estimated 17,000 younger people (under 65) also have dementia. Nationally, Alzheimers disease accounts for 62% of all dementia - with vascular dementia and mixed dementia accounting for a further 27%. Dementia is a leading cause of disability and death in people aged 65 and over In the UK people from Black and Minority Ethnic (BME) groups make up just 1.7% of the total population affected by dementia. This group is expected to increase by 15% over the next decade. BME groups have a younger age profile than the national average which is reflected in the larger proportion of people from BME groups with early onset dementia 6.1% - compared to an average of 2.2% for the UK.

It is estimated that 63.5% of people with dementia live in the community; two thirds of who are supported by carers and one third live alone. Approximately 36.5% of people with dementia live in care homes.

The Role of Preventative and Self Help

While there is currently no cure for dementia there are a number of ways in which people may be able to reduce or delay the onset of dementia. A number of studies have indicated that that people 65 and older who exercised for at least 15 minutes per day were at a lower risk of getting dementia. Exercise does not have to be vigorous and could include regular walking, climbing stairs, gardening and house work. As little as 15 minutes of exercise per day proved to lower vascular dementia, the second most common form of dementia after Alzheimer's. Developing a positive mental attitude; positive thinking leads to positive emotions, which are healthy for the brain. Evidence suggests that depression has a negative impact on the brain and can speed up the brain's ageing process. The power of positive thinking can play a role in decreasing the chances of getting dementia. Hypertension can increase the chances of vascular dementia. Managing stress can also play a part in reducing peoples incidence of dementia. People who suffer from hypertension should talk to their doctor and make a plan to reduce hypertension. Eat sensibly; studies show that folic acid decreases levels of homocysteine; this amino acid, at high levels, has been linked to Alzheimer's. It can be found primarily in green vegetables and fruits and is also available as a dietary supplement. Studies also report that the more mentally stimulating activities that people aged 75 and older took part in, the less their chances of getting dementia. Extensive activity can lead the brain to be able to withstand a higher degree of brain damage before developing dementia. Board games, crossword puzzles, reading and playing a musical instrument helped mental stimulation.

We also need to be aware that not all memory problems are related to dementia. Many of us can become forgetful as a result of illness, when we get stressed, or as a result of taking some common medicines. It is important that people check out what is causing their problems by visiting their GP who can, if necessary refer people on for a more specialist diagnosis.

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: The National Service Framework for Older People 2001 Opportunity Age 2005 Everybodys Business 2005 National Institute of Clinical Excellence (NICE) Clinical Guidelines Dementia 2006 New Ambition for Old Age next steps in implementing the National Service Frame Work 2006 Our Health, Our Care, Our Say 2006 High Quality Care for All Lord Darzis Review 2008 Transforming the Quality of Dementia Care 2008

New Horizons 2009 National Dementia Strategy 2009

The National Dementia Strategy Living Well with Dementia 2009 provides a five year plan toward the development of dementia care services that are fit for the 21st century. The National Dementia Strategy has three key elements: Ensure better knowledge about dementia and remove stigma Ensure early diagnosis support and treatment for people with dementia, and their families and carers. Develop services to better meet changing needs.

The 16 Outcomes of the National Dementia Strategy will ensure that people with dementia: Know where to go for help Know what services they can expect Are encouraged to seek help early for problems with memory Get high quality and equitable care wherever they live Are involved in decisions about their care The National Dementia Strategy must be linked to other Local Strategies including: The Local Area Agreement NHS Luton and Luton Borough Council Joint Strategic Needs Assessment Strategy for Commissioning Services for Older People 2008-13 Luton Carers Strategy Supporting People Commissioning Plan 2006-2011 Draft Strategy for the Commissioning of Services for People with a Learning Disability 20082013 NHS Lutons Transforming Primary and Community Services Strategy 2010-2015 NHS Luton Mental Health Strategy 2009 2014 Luton Alcohol Harm Reduction Strategy 2008 2011 NHS Lutons Transforming Primary and Community Services Strategy 2010-2015 NHS Luton End of Life Strategy 2010-2015 There is no doubt that ensuring that the aspirations contained in the National Strategy 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 NHS, Local Authority, Voluntary and Independent Sector, will rise to this challenge.

Overview - Where We are Now

Services for people with dementia in Luton are delivered by several organisations including Luton Borough Council, NHS Luton, Luton and Dunstable Hospital NHS Foundation Trust, South Essex Partnership University NHS Foundation Trust (SEPT), the Voluntary Sector and Independent Sector, who provide, or are commissioned to provide, a range of services and support to people with dementia and their carers.

This strategy has been informed and underpinned by the information generated by the Regional Benchmarking Review undertaken following the publication of the National Dementia Strategy in 2009, the information produced by the Partnerships for Older People Projects (POPPs) programme and by input from a range of key stakeholders - including people with dementia, their carers, professionals and workers involved in dementia care and a range of organisations in the voluntary, not for profit and independent sectors. Throughout the development of the strategy we have listened to people with dementia and their carers. The following is a snapshot of the things, both positive and negative, that carers have told us: Caring for (my wife) is a 24 hour job, there is no rest for a carer of a dementia patient, we are always on the go. We live off adrenaline, because we cannot relax just in case they wander off, or they get anxious or agitated about where they are or who you are. My husband was diagnosed with Alzheimers dementia in 2001, when he was 63 years of age. He attends a day centre two days a week. These are very precious days as on these days I am able to regain my sanity and have me time. There was no consistency with carers supplied so my sister would become even more anxious and confused about strangers in the house. But when a carer was found who was good and with whom my sister could relate, she left and another carer was supplied. The staff of the Day Centre have always supported and listened through difficult times, encouraged and advised. They have intervened in a crisis and have allowed breaks on Saturdays and Sundays enabling some normality of life for myself and my husband at week-ends. When my husband became aggressive at home, I had to dial 999 in order to get help. He was admitted on a general ward with a policeman who nearly put handcuffs on him. Over time I became stressed, exhausted and close to a breakdown. One day in desperation I rang the local Alzheimers Association who visited and advised me of the Day Centre. After contact with a social worker it was agreed that my mother could attend for three days per week and so began a new chapter in our lives and a two year history of care by the staff of this Day Centre. Care delivered with love, with respect and with dignity. I asked the Psychiatrist numerous questions about dementia. But unfortunately he couldnt answer any of my questions because as he said, I am not an expert in dementia. When I enquired as to who was, he told me it was the psychiatrist for the Elderly who was the expert, but my husband wouldnt see him until he was 65. At this time my husband was 56 years old. Listening to these, and other comments, has helped us to shape our Strategy and Commissioning Intentions. We remain firmly committed to maintaining this level of engagement throughout the lifetime of the strategy.

This strategy is a work in progress and as such it will be refreshed on a yearly basis, in response to what people with dementia and their carers tell us they want and as our knowledge and experience about what works increases.

Dementia in Luton
Latest Mid Year (2008) Population Estimates from the Office for National Statistics (ONS) put the population for Luton at 191,800. Research undertaken by the Local Authority suggests that this is a serious underestimate of the population and a figure of 203,800 is more realistic. The Authority believes that the influencing factor in the difference is migration which the Authority believes is underestimated by ONS. Trends in the ONS projections clearly show an ongoing increase in the numbers of children and young people up to 2016, thereafter a decline is projected in these groups. Trends also 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 circulatory 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. Approximately 35% of the population of Luton are from Black and Minority Ethnic (BME) communities, with significant Pakistani, Bangladeshi, Indian and African Caribbean communities. The trends in these projections show a slight increase in Asian and Black/Black British populations. Having a large and diverse BME community presents particular issues for Luton in both estimating the current and future prevalence of dementia, ensuring awareness of dementia within BME communities and in developing and providing culturally appropriate diagnosis and support services. There are a number of issues which may underpin Lutons 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 people and the recognition of dementia as a condition is lower among South Asian and African Caribbean people than among the population as a whole. 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. 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. 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. Assessors may not be able to offer a sensitive and effective assessment because they are not sufficiently familiar with the lifestyles, health, religious and cultural needs of older people and their carers from minority ethnic communities. Standard diagnostic tests for dementia, or depression, may not be culturally appropriate and may lead to inaccurate diagnosis. 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. 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. 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. No suitable services may be available where the older person's language is spoken and their cultural, religious and dietary needs can be met. Conversely, assessors may make assumptions about the lack of acceptability of mainstream services to older people and their families, and not offer them. Low 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. For example: there are currently 560 people on GP registers with dementia. This figure is lower than the expected approximately 900 people with dementia which prevalence figures from national data would indicate. As earlier sections have commented, it is difficult to know how much both low reporting rates against national prevalence figures and low numbers in relation to specialist diagnose are a true indicator of prevalence or are wholly (or in part) a result of the particular challenges Luton faces in regard to its BME population. While diagnose rates have increased substantially since 2008, the current figure of 200+ specialist diagnosis per year still falls short of the figure predicted by national prevalence rates. Work on establishing accurate prevalence rates will, to some degree depend on other work with a range of BME communities and the development of culturally sensitive information, diagnosis and services. This work will allow us to determine appropriate levels of specialist diagnosis and service provision.

Headline Messages Older People

Table 1 Projected population 65+ for Luton, 2008-2025
Gender Age 2008 2010 2015 2020 2025

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Male

Female

65-69 70-74 75-79 80-84 85+ All 65+ 65-69 70-74 75-79 80-84 85+ All 65+ Total 65+

3,300 3,300 2,300 1,500 800 11,200 3,300 3,200 2,400 1,700 1,700 12,300 23,500

3,400 3,100 2,500 1,500 900 11,400 3,400 3,200 2,500 1,800 1,700 12,600 24,000

3,900 3,000 2,600 1,900 1,200 12,600 4,200 3,200 2,800 2,000 1,800 14,000 26,600

3,600 3,500 2,600 2,100 1,700 13,500 3,900 3,900 2,800 2,300 2,200 15,100 28,600

4,000 3,200 3,000 2,100 2,100 14,400 4,300 3,600 3,500 2,400 2,600 16,400 30,800

Table 2 Estimated number of new cases of dementia each year in Luton

Gender Male Age 65-69 70-74 75-79 80-84 85+ All 65+ 65-69 70-74 75-79 80-84 85+ All 65+ 65+ 2008 23 48 33 26 47 176 21 20 36 53 122 251 426 2010 23 45 36 26 53 182 21 20 37 56 122 256 438 2015 27 44 37 32 70 210 26 20 41 62 129 279 489 2020 25 51 37 36 99 247 25 24 41 72 158 319 567 2025 28 46 43 36 123 275 27 22 52 75 186 362 637

Female

Total

Table 3 Summary of estimated growth in prevalence of dementia in Luton Area

Luton Increase in prevalence of dementia on 2008 (%)
2010 3.0% 2015 16.0% 2020 35.0% 2025 51.0%

What these tables clearly show is that the number of people with dementia in Luton will clearly rise over the next fifteen years, with the number increasing by 51%. Based on a more detailed analysis of the 65 and over population, it is estimated that the number of people aged 85 and over with dementia will rise from 586 in 2008 to 889 by 2020, a rise of 303 persons. Most significant is the increase in the number of men over 85 likely to have dementia. There are currently 653 beds in Residential Homes and 391 beds in Nursing Homes in Luton. Based on national data it is believed that approximately 25% of older people in Residential Homes and 30% of older people in Nursing Homes have some form of dementia.

Headline Messages - Other High Risk Groups

Younger People with Dementia Lutons 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 11

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. Table 4 - Projected population 18 64 for Luton, 2008-2025
Gender Male 2008 18-24 25-34 35-44 45-54 55-64 All aged 18-64 18-24 25-34 35-44 45-54 55-64 All aged 18-64
11,000 14900 14,600 11,200 9,000 60,700 10,600 14,000 13,000 11,200 9,000 57,800

2010
11,100 15600 14,200 11,800 8,800 61,500 10,600 14,500 12,500 11,700 91,00 58,400

2015
10,400 17300 13,000 12,700 9,000 62,400 10,000 15,700 12,000 11,900 9,300 58,900

2020
9,600 17600 13,700 12,300 9,900 63,100 9,500 15,800 12,500 11,200 10,200 59,200

2025
10,100 16900 15,000 11,500 10,700 64,200 9,900 15,200 13,400 10,800 10,400 59,700

Female

Table 5 - Estimated prevalence of young onset dementia in Luton, 2008-2025

Gender Male Age 30-39 40-49 50-59 60-64 All 30-64 30-39 40-49 50-59 60-64 All 30-64 30-64 2008
1 2 12 9 24 1 3 7 5 17 41

2010
1 3 12 9 24 1 3 7 5 17 41

2015
1 3 13 8 24 1 3 8 5 17 41

2020
1 2 14 9 26 1 3 8 6 18 44

2025
1 2 14 10 27 1 3 8 6 18 45

Female

Total

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 span organisational boundaries through partnership working.

Those with Learning Difficulties There is strong national evidence that the prevalence of mental health problems (including dementia) in people with learning difficulties is approximately four times higher than in the general population. At present, we do not know why this is the case, and further research is needed.

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Some studies (Cooper 1997, Lund 1985, Moss and Patel 1993) suggest that the following percentages of people with learning difficulties (not due to Down's syndrome) have dementia: Table 6 - Prevalence of Dementia Learning Difficulties
Age 50+ 65+ %
13 22

While there is no evidence that dementia affects people with learning difficulties differently to how it affects other people, the early stages are more likely to be missed or misinterpreted particularly if several professionals are involved in the person's care. The person may find it hard to express how they feel that their abilities have deteriorated, and problems with communication may make it more difficult for others to assess change. About 20% of people with a learning difficulty have Down's syndrome, and people with Down's syndrome are at particular risk of developing dementia. One study (Prasher 1995) suggests that the following percentages of people with Down's syndrome have dementia: Table 7 - Prevalence of Dementia - Downs Syndrome
Age 30-39 40-49 50-59 60-69 %
2.0 9.4 36.1 54.5

The incidence of dementia for those with Downs syndrome is about twelve times higher than in the general population. We will work with colleagues in Learning Disability Services to ensure that the needs of people with early onset dementia are recognised and planned for, that services are developed jointly and that the Dementia Strategy and Learning Disabilities Strategy and effectively coordinated. 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.

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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.

Where We Would Like to Be

In September 2010 the Department of Health published Quality outcomes for people with dementia: building on the work of the National Dementia Strategy. This document signalled a new approach to determining and measuring what is important to people with dementia and their carers, an approach which focuses on the experiences of each individual and seeks to identify a set of key outcomes which people with dementia and their carers should expect.
The following nine statements attempt to capture what people with dementia told the Department of Health that they aspire to in terms of their expectations of health and social care systems.
I was diagnosed early I understand, so I make good decisions and provide for future decision making I am treated with dignity and respect I feel part of a community and Im inspired to give something back I get the treatment and support which are best for my dementia, and my life I know what I can do to help myself and who else can help me I am confident my end of life wishes will be respected. I can expect a good death

Those around me and looking after me are well supported I can enjoy life

During extensive consultation on our Draft Strategy we asked people if they felt that these statements reflected the aspirations of people with dementia and their carers in Luton. The response indicated a high level of support for the use of these statements although a number of people thought that they focused specifically on the person with dementia rather than their carer(s). Many felt it would be useful to develop a similar set of statements, which specifically reflect positive outcomes for carers. A range of statements will be developed which reflect positive and measurable outcomes for carers. We believe that, together, the outcomes for people with dementia and the outcomes for carers, when underpinned by a set of specific, measurable, indicators across health and social care - which are currently being developed by the Department of Health will form an effective system for both determining where we would like to be in Luton and for determining our progress over time in achieving these aspirations.

How We Will Get There

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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 peoples legal and human rights are safeguarded, promoted and maintained. 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. This Joint Commissioning Strategy forms part of the Long Term Conditions work stream of the Quality, Innovation, Productivity and Prevention (QIPP) Board. The QIPP program has a number of other work streams which will contribute to the delivery of dementia care in Luton, these work streams will be coordinated with the Commissioning Intentions and Actions outlined in this Strategy. Our Joint Commissioning Strategy for Dementia Care and our local implementation plan are works in progress and will be refreshed annually from 2010-15. The Luton Dementia Joint Commissioning Strategy and Local Implementation Plan were produced under the direction of the Dementia Strategy Group, as a draft for consultation and are subject to a twelve week period of public consultation and scrutiny. Membership of the Dementia Strategy Group drew from all sectors; the membership of this group can be found in Appendix A. The group has identified a number of priority Work Stream clusters including; Early Intervention and Diagnosis Covering Objectives 2,3,4,5 and 12 Quality of Care Covering Objectives 6,7,8,9,10 and 11 Workforce Training and Development Covering Objectives 1 and 13

Our Priorities and Our Commissioning Intentions

Work Streams for each priority area have been established and Commissioning Intentions and Actions in respect of each Objective have been identified. (See below) These Commissioning Intentions and Actions will be developed and monitored through the governance arrangements noted above and will be prioritised taking into account the timeframes outlined in the National Dementia Strategy; the priorities set by the Department of Health and the priorities set by the Dementia Strategy Group (taking account of available resources).

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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. The core membership for each Work Stream has been drawn from all sectors and membership of these Work Stream Groups can be found in Appendix B.

The Economic Challenge

It is also worthy of note that this strategy will be implemented during a time of financial constraint which will mean resources will be stretched, investments in new services and support systems will need to demonstrate more than ever that key outcomes for people with dementia and their carers are being delivered in an effective and efficient manner. Future funding streams for dementia care will be guided by the use of a comprehensive Mapping Toolkit which will allow priorities to be identified and detailed business cases to be developed. The following Commissioning Intentions and Actions have been developed to ensure that the Objectives in the National Strategy are delivered at a local level. The national Objectives have been reordered in relation to the timescales in which each Objective should be fully implemented.

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Joint Commissioning Intentions/Actions Dementia Strategy Objectives

Objective 1 - Improving public and professional awareness and understanding of dementia Full Implementation by 2010/11 Lead Agency Establish an Information Strategy and Communications Plan Develop local information campaign Make use of existing campaigns Make best use of universal services to inform hard to reach groups Include information on Dementia in all Health Promotion material Objective 7 - Implementing carers strategy Full Implementation by 2010/11 Lead Agency Ensure the needs of carers are addressed in a holistic way Ensure effective respite care is available for patients and carers Joint Joint Owner Head of Vulnerable Adults - Joint Commissioning for NHS & LBC, Carers Development Officer (ADS, LBC) Head of Vulnerable Adults - Joint Commissioning for NHS & LBC, Carers Timescale Ongoing 1/12/ 2011 Joint Joint Joint Joint Joint Owner Communications and Information Manager (LBC) Communications and Information Manager (LBC) Communications and Information Manager (LBC) Head of Vulnerable Adults - Joint Commissioning for NHS & LBC Head of Vulnerable Adults - Joint Commissioning for NHS & LBC Timescale Ongoing 1/11/2011 Ongoing Ongoing Ongoing

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Development Officer (ADS, LBC) Improving support to carers and investigate the use of self directed support for carers Business Redesign and Self Directed care manager - HCL-LBC, Personalisation Development Manager (ADS, LBC), Carers Development Officer (ADS, LBC)

Joint

1/02/2012

Objective 10 - Considering the potential for housing support, housing-related services and telecare to support people with dementia and their carers Full Implementation by 2011/12 Lead Agency Ensure the needs of people with dementia are included in the review of housing, accommodation and support All partners are engaged in ensuring gold standard training reaches this sector Work with providers to create a business case for telecare for people with dementia Develop a model for the provision of assistive technologies to people with dementia Objective 2 - Good-quality early diagnosis and intervention for all Coming on Stream 2010/11 - Full Implementation by 2011/12 Lead Agency Owner Senior Commissioning Manager Joint Commissioning (ADS, LBC), Acting Consultant Psychiatrist for the Elderly (MAS) Acting Consultant Psychiatrist for the Elderly (MAS) Senior Commissioning Manager Joint Timescale LA Joint Owner Senior Commissioning Manager Joint Commissioning (ADS, LBC) Learning & Development Manager (HCL, LBC) Telelink Care Services Manager, Personalisation Development Manager (ADS, LBC) Personalisation Development Manager (ADS, LBC) Timescale Completed Ongoing

Joint

1/02/2012

Joint

1/02/2012

Ensure that an agreed Dementia Care Pathway is in place.

Joint

1/12/2011

Key stakeholders are using the Care Pathway. Everyone knows how to access specialist assessment.

Joint Joint

1/12/2011 1/12/2011

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Commissioning (ADS, LBC), Head of Vulnerable Adults - Joint Commissioning for NHS & LBC All new cases of dementia must be seen within an agreed time frame (including expansion of the Memory Assessment Service) Joint Head of Vulnerable Adults - Joint Commissioning for NHS Luton & LBC, Mental Health Commissioning Lead Director Age Concern, Carers Development Officer (ADS, LBC, Locality Manager Bedfordshire and Luton Alzheimer's Society Service ManageContracts and Quality Assurance 1/5/2012

Ensure there is range of information, support and services available to all who need them.

Joint

1/02/2012

Ensure performance indicators are developed, deployed and monitored.

Joint

1/02/2012

Objective 3 - Good-quality information for those diagnosed with dementia and their carers Coming on Stream 2010/11 - Full Implementation by 2011/12 Lead Agency Review and collate all existing information and develop an information pack suitable for all Owner Director Age Concern, Carers Development Officer (ADS, LBC), Locality Manager Bedfordshire and Luton Alzheimer's Society Director Age Concern, Carers Development Officer (ADS, LBC), Locality Manager Bedfordshire and Luton Alzheimer's Society Timescale

Joint

1/02/2012

Develop and implement an Information Strategy for dementia care for Luton.

Joint

1/02/2012

Objective 6 - Improved Community Personal Support services - Coming on Stream2010/11 Full Implementation by 2011/12 Lead Agency Ensure that people with dementia are fully integrated within Self Directed LA Owner Planning and Development Manager Timescale Complete

19

Care

(ASC, LBC), Mental Capacity Act Coordinator (LBC) Personalisation Development Manager (ADS, LBC) Business Redesign and Self Directed care manager - HCL-LBC, Service Manager Purchasing and Quality Assurance, NHS Lead, CHC & FNC (Continuing Healthcare and Funded Nursing care) Personalisation Development Manager (ADS, LBC) Business Redesign and Self Directed care manager - HCL-LBC, Service Manager Purchasing and Quality Assurance

Monitor what works within SDC adjusting/tailoring services where necessary

Joint

Ongoing

Ensure that the needs of people with dementia are firmly embedded within Joint Commissioning.

LA

Ongoing

Objective 11 - Living well with dementia in care homes Coming on Stream 2011/12 - Full Implementation by 2012/13 Lead Agency Local Authority contracts require a senior member of staff to lead on improving quality of care in relation to dementia Local Authority contracts require that each residential home has a strategy for managing people with dementia. Develop complementary strategies in respect of Behaviour Management within care homes Develop and embed across Luton best practice guidelines for managing people with dementia in residential care Establish clear care pathways with Mental Health Teams around the provision of crisis support to care homes. LA Owner Service Manager Contracts and Quality Assurance, Contracts and Quality Assurance Manager (ASC, LBC) Service Manager Contracts and Quality Assurance, Purchasing and Quality Assurance Manager (ASC, LBC Mental Health Commissioning Lead Mental Health Commissioning Lead Mental Health Commissioning Lead Timescale 01/02/12

LA

01/02/12

SEPT, Luton SEPT, Luton SEPT, Luton

01/02/12 01/02/12 01/02/12

20

Review the commissioning of other in-reach services Objective 9 - Improved intermediate care for people with dementia Coming on Stream 2011/12 - Full Implementation by 2012/13

SEPT, Luton

Head of Vulnerable Adults - Joint Commissioning for NHS & LBC

01/02/12

Lead Agency

Owner Senior Commissioning Manager Joint Commissioning (ADS, LBC), Head of Vulnerable Adults - Joint Commissioning for NHS & LBC, Integrated Operations Manager (L&D Hosp Trust) Senior Commissioning Manager Joint Commissioning (ADS, LBC), Head of Vulnerable Adults - Joint Commissioning for NHS & LBC, Integrated Operations Manager (L&D Hosp Trust)

Timescale

Ensure that the needs of people with dementia are considered and addressed within existing Intermediate Care Services

Joint

01/02/12

Ensure that the needs of people with dementia are addressed during planning for the shift in responsibility for Intermediate Care, Re-enablement Services and Discharge Support in April 20

Joint

01/02/12

Objective 12 Improved end of life care for people with dementia. Coming on Stream2011/12 - Full Implementation by 2012/13 Lead Agency Ensure all aspects of dementia care are covered in the Luton End of Life Care Strategy. Joint Owner Medical Director of Keech Hospice Care for Adults and Children, End of Life Care facilitator (PCT) Timescale 01/02/12

Objective 8 Improved quality of care for people with dementia in general hospitals Coming on Stream 2010/11 - Full Implementation by 2012/13 Lead Agency Identify a senior clinician within the general hospital to take the lead on dementia care. L&D Owner Consultant lead for dementia (L&D Hosp Trust) Timescale 01/02/12

21

Map the dementia care pathway for acute care (including the development of an acute liaison service) Ensure the ongoing needs of people with dementia who are inpatients are understood and their needs met Ensure discharge arrangements plan for and meet the needs of people with dementia

L&D

Assistant General Manager (L&D Hosp Trust), Matron Implementing Dementia Strategy (L&D Hosp Trust) Assistant General Manager (L&D Hosp Trust), Matron Implementing Dementia Strategy (L&D Hosp Trust) Assistant General Manager (L&D Hosp Trust), Head of Vulnerable Adults - Joint Commissioning for NHS & LBC

01/02/12

L&D

01/02/12

L&D/PCT/LA

01/02/12

Objective 5 - Development of structured peer support and learning networks Gearing Up 2010/11 - Coming on Stream 2011/12 - Full Implementation by 2012/13 Lead Agency Map and audit what services are currently in place. Evaluate current services, regional and national pilot schemes to establish best practice. Develop a range of best practice models and a business case for Luton Joint Joint Joint Owner Head of Vulnerable Adults - Joint Commissioning for NHS & LBC Head of Vulnerable Adults - Joint Commissioning for NHS & LBC Mental Health Commissioning Lead Timescale 01/02/12 01/02/12 01/02/12

Objective 13 - An informed and effective workforce for people with dementia Gearing Up 2011/12 - Coming on Stream 2011/12 - Full Implementation 2013/14 Lead Agency Establish a baseline of core competencies, best practice and behaviors Establish appropriate levels of core competencies, best practice and behaviors for each level of involvement Assist all bodies, organisations, professions and individuals to audit to what degree these baselines are currently being met. Joint Joint Joint Owner Day Centre Manager - Farley Day Centre Day Centre Manager - Farley Day Centre Day Centre Manager - Farley Day Centre Timescale 01/02/12 01/02/12 Ongoing

22

Support the development of training/support programme to reinforce this baseline and address any current gaps. Ensure these core competencies, best practice and behavior requirements are included in all relevant Contracts and SLAs Ensure that workforce strategies are coordinated in how they address dementia care.

Joint Joint Joint

Day Centre Manager - Farley Day Centre Day Centre Manager - Farley Day Centre Day Centre Manager - Farley Day Centre

Ongoing Ongoing Ongoing

Objective 4 - Enabling easy access to care, support and advice following diagnosis. Gearing Up 2010/11 - Coming on Stream 2011/12 - Full Implementation 2012/13 Lead Agency Owner Director Age Concern, Carers Development Officer (ADS, LBC), Locality Manager Bedfordshire and Luton Alzheimer's Society Senior Commissioning Manager Joint Commissioning (ADS, LBC) Head of Vulnerable Adults - Joint Commissioning for NHS & LBC Timescale

Map and audit what services are currently in place.

Joint

Ongoing

Evaluate these and other regional and national pilot schemes to establish best practice. Establish a care pathway for dementia advisors and establish a robust business case for future development.

Joint Joint

Ongoing 01/02/12

23

Appendix A - Dementia Strategy Group Members

Name Simon Pattison Dr. Johan Schoeman Rod While Karen Malone Dr. R. Reddy Susan Doherty Dr. Anthea Bond Paula Mansfield Matron Sharma Clare Warren Pat Brown Ian McCreath Collette McCleavey Alan Thompson Hilary Bartle Richard Carrington Kimberly Radford Job Role Head of Vulnerable Adults NHS Luton/Luton Borough Council OA Consultant Psychiatrist Strategic Planning Mental Health Commissioning Lead, NHS Luton Learning Disability Representative Practice Manager GP Mental Health Lead Acute Sector Rep Unit Manager Matron L & D Dementia Nurse Specialist Carer Representative Regional Manager Director Strategic Housing Representative Supporting People Representative Service Planning & Development Manager Commissioning Manager Joint Commissioning Alzheimers Society Age Concern LBC LBC LBC LBC Organisation NHS/LBC SEPT NHS Luton NHS Luton NHS Cluster NHS Luton NHS Luton PCT Luton & Dunstable Hospital SEPT

24

Appendix B - Work Stream Group Members

Workstream 1&4 Early Diagnosis and End of Life Care Name
Clare Warren Collette Mcleavey Dr Anthea Robinson Dr Duke Phiri Dr Johan Schoeman Elaine Tolliday Nasrin Haq, Helen Ryder Ian McCreath Jean Barr Judith Summers Karen Malone Marion Watts Pat Brown Theresa Phillips Susan Doherty Diane Walsh

Job Role
Dementia Nurse Specialist Director GP Mental Health Lead Consultant lead for dementia Consultant Psychiatrist OA Adult Services Manager Project and Development Officer for BME Groups Carer Locality Manager Bedfordshire and Luton End of Life Care facilitator Medical Director of Keech Hospice Care for Adults and Children Mental Health Commissioning Lead Specialist Speech and Language Therapist for Dementia/Adult SLT Manager Carer Representative Project & Dev. Officer BME Group Luncheon Clubs Practice Manager in General Practice Carers Development Officer (ADS, LBC)

Organisation
MAS (SEPT) Age Concern NHS Luton L&D Hosp Trust MAS (SEPT) Keech Cottage Hospice LBC Alzheimer's Society NHS Luton Hospice NHS Luton NHS Luton LBC/HCL/ASC NHS Luton LBC/HCL/ASC

Workstream 2 Quality of Care Name

Sue Bird, Karen Brooks Debbie Green Dr Duke Phiri Tricia Forde Nasrin Haq Suzanne Hogg Ian McCreath Karen Malone Louise Young Maud O'Leary Carl Partridge Simon Pattison

Job Role
Integrated Operations Manager Mental Capacity Act Coordinator Operational Standards Manager-Dementia Consultant lead for dementia Telelink Care Services Manager Project and Development officer Commissioning & Contracts Officer Locality Manager Bedfordshire and Luton Alzheimer's Society Mental Health Commissioning Lead Assistant General Manager Service Manager Purchasing and Quality Assurance Personalisation Development Manager Head of Vulnerable Adults - Joint Commissioning for NHS & LBC

Organisation
L&D Hospital Trust NHS Luton L&D Hospital Trust LBC/HCL/ASC LBC/HCL/ASC Alzheimer's Society NHS Luton LBC/HCL/ASC LBC/HCL/ASC PCT/LBC

25

Paula Mansfield Bob Revell Vimla Sharma (Matron) Diane Walsh Andy Assan Helen Ryder

Acting Ward Manager Head of Commissioning for Older People Matron Implementing Dementia Strategy (L&D Hosp Trust) Carers Development Officer Project Manager Carer

L&D Hospital Trust LBC/HCL/ASC L&D Hospital Trust LBC/HCL/ASC LBC/HCL/ASC -

Workstream 3 Training and Development Name

Clare warren Collette Mcleavy Debbie Green Dr. Anthea Robinson Fiona Cavanagh Jim Gregg Ian McCreath Adam Kearney Louise Young Lesley McNeill Robert Nugent Bob Revell Sally Spencer Sue Harrison Vimla Sharma Diane Walsh Dr Johan Schoeman

Job Role
Dementia Nurse Specialist Director Operational Standards Manager-Dementia Mental Health GP lead Day Centre Manager Locality Manager Bedfordshire and Luton Communications and Information Manager Assistant General Manager Learning & Development Manager Learning & Development Officer Head of Commissioning for Older People Quantum Care Matron Carers Development Officer Consultant Psychiatrist OA

Organisation
MAS (SEPT) Age Concern Quantum Care NHS Luton LBC Alzheimer's Society LBC L&D Hospital Trust LBC/HCL LBC/HCL LBC/HCL/ASC Private Care Provider L&D Hospital Trust LBC/HCL/ASC SEPT

26

Appendix C - Luton Basic Care Pathway

27

Dementia Strategy Government Timelines Gearing up

2009-2010 2010-2011
01 Public Information campaign 07 Implementing carers strategy 10 Housing including Telecare 02 Memory services 03 Information for people with dementia and carers 06 Improved community personal support 11 Improved care in care home 09 Improved intermediate care for dementia 12 Improved end of life care 08 Improved care in general hospitals 05 Peer support 13 Workforce competencies, development and training 04 Continuity of support for people with dementia and carers 28

Coming on Stream
2011-2012

Full Implementation
2013-2014

2012-2013