Acknowledgements and Consultation Arrangements. 2. Development of the Strategy Policy Context Local Needs Local Services Key Themes

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2 CONTENTS Foreword Acknowledgements and Consultation Arrangements Executive Summary 1. What is Dementia? 2. Development of the Strategy Policy Context Local Needs Local Services Key Themes 3. Vision and Strategic Aims 4. Strategy Outcomes 5. Implementation, Governance and Review 6. Priority Actions Public and Professional Awareness Information and Advice Peer Support and Learning Workforce Development Support for Families and Carers Early Diagnosis and Intervention Social Care and Support at Home Support in the Community Supported Housing and Care Homes Crisis and Respite Care Specialist Mental Health Services Medicines Management Hospital Care End of Life Care Young Onset Dementia Dementia and People with Learning Disabilities Prison Services Cultural Diversity Safeguarding 7. Commissioning 8. Summary and Acknowledgements Appendices 2

3 Foreword In order to achieve the aims of the national dementia strategy and meet the local demographic challenges facing the county it is imperative that health and social care services, in partnership with other services, have a clear strategy for supporting people with dementia, their families and carers in Worcestershire, now and in the future. The delivery of health and social care services are facing radical changes following publication of the NHS White Paper in July 2010 and the Comprehensive Spending Review. One thing that will remain unchanged locally is our commitment to keep dementia care as one of our top priorities. This changing context at both national and local level requires us to prepare a strategy, which in uncertain times, sets out a clear vision underpinned by health and social care commitment to dementia. This vision acknowledges the evident and sometimes unpredictable challenges concerning finance and changing population which makes planning and implementation locally more complex. We feel that this local strategy will meet these challenges, build on established work programmes and aim to deliver improved quality of care and health outcomes for people with dementia. Indeed the new Government s core policy themes of localism and Big Society, personalised care and support, care closer to home, and no decision about me, without me underpin the development and delivery of this strategy. In order to meet the varied needs of people with dementia it is vital that a wide range of services are engaged in the delivery of care and support. For this reason the strategy is based on a shared vision amongst all key agencies and a collaborative approach towards delivery of joined up services for people with dementia. In particular we feel the development of services that support people to 'live well with dementia' within the community following early diagnosis and subsequent delivery of information advice and emotional or practical support are key to success. The strategy will inform decisions on how resources are allocated in the future with regard to support services for people with dementia, and also influence the practice of a wide range of service providers with regard to their understanding and awareness of dementia and their subsequent delivery of effective support services that are person centred. In summary we are extremely pleased to release this strategy. Its implementation will drive forward the development of important changes in the delivery of support services for people with dementia and result in improved care and quality of life for people with dementia, their families and carers. Eddie Clarke Director of Adult and Community Services Worcestershire County Council Paul Bates Chief Executive NHS Worcestershire 3

4 Acknowledgements and Consultation Arrangements This strategy has been developed collaboratively between NHS Worcestershire and Worcestershire County Council's Adult and Community Services to ensure joined up thinking and delivery of services across health and social care. We would like to acknowledge the support and contribution of the members of the Care Planning Partnership, Kathy Dale, the Dementia Implementation Group and all the programmes and projects across the health and social care economy including the voluntary and community sector to its development and its ongoing delivery: The public consultation period for this strategy runs from 8th November 2010 to 8 th February 2011 We are very keen to hear your views so please submit them using the attached form, either electronically or by post. If you require this document interpreted please contact the officer below. Susan Pinfold Brown Dementia Strategy Programme Manager Address 3 Wildwood Triangle, Swinesherd way, Worcester WR5 2QX Phone Number: susan.pinfold-brown@worcestershire.nhs.uk Following the public consultation phase and once the strategy has been finally agreed we will develop both What Does it Mean For Me? guides on the strategy for people with dementia, their families and carers, and health and social care staff that will contain relevant contact information on key services, and also a shorter version of the strategy for the general public. 4

5 Executive Summary It is estimated that there are 750,000 people living with dementia in the UK and that this figure will rise to over 1 million by This represents 1 in 20 of people aged 65 and above rising to 1 in 4 for those over the age of 85 years. It is also estimated that the current financial cost of people living with dementia in the UK is over 20 billion a year, and as such that it's financial impact is more than that of cancer, stroke and heart disease combined 1 In Worcestershire, the number of people with dementia is proportionately higher than in other areas of the country, and these numbers are projected to increase considerably over the next 15 years as people will live longer. In order to meet this challenge at a time of financial constraint it is imperative that we engage everyone involved in the delivery of health and social care services, as well as those delivering other relevant support or universal services, to contribute towards delivery of improved care and quality of life for people with dementia, their families and carers. We need to capture the hearts and minds of key professionals to ensure they have the necessary understanding and awareness of dementia to enable them to enhance their day to day practice so that it is more person centred and focused on the reality needs of those with dementia. We need to focus more resources on early diagnosis and the subsequent delivery of personalised information advice and support that enables people to live well with dementia in the community. We similarly need to ensure that within acute hospital settings and during the end of life period that people with more severe or advanced dementias receive appropriate support. In summary we need to see a cultural change in the delivery of health and social care services where they empathise with the needs and aspirations of people with dementia, their families and carers, and where they are able to respond in a person centred way to these needs and aspirations. If we can achieve this change within the health and social care sector we will be better placed to influence awareness, understanding, culture and practice amongst the wider range of service providers and amongst the wider community itself. 1 King s Fund s report Paying the price (2008) 5

6 1. What is Dementia? Dementia is a terminal brain disease characterised by a gradual loss of mental awareness, loss of memory, personality change and deteriorating and debilitating functional capacity. For most people the cause is unknown but there are some known causes or risk factors such as: diseases and infections that affect the brain e.g. Alzheimer s disease or meningitis; pressure on the brain e.g. brain tumor; lack of blood and oxygen supply to the brain e.g. stroke and head injuries; cardio-vascular insufficiencies. Dementia is most common in people over the age of 65 but there are also a smaller cohort of people who develop young onset or working age dementia from as young as 35. Incidence equates to about 6 in 100 people aged over 65 developing the condition, rising to around 20 in 100 for people aged 85 or over. Young onset dementia is rarer with only around 1 in 1,000 people under 65 affected (Dementia UK 2007) The Different Types of Dementia (National Audit office 2007) Alzheimer s disease accounts for 62 per cent of dementias in England. It changes the chemistry and structure of the brain, causing brain cells to die. Vascular dementia is caused by problems with the supply of oxygen to the brain following a stroke or small blood vessel disease. Vascular dementia along with those mixed vascular with Alzheimer s dementias, make up around 30 per cent of the total. Dementia with Lewy Bodies is caused by protein deposits that develop inside nerve cells in the brain and interrupt its normal functioning. It shares symptoms with Parkinson s disease, including slowness of movement. It accounts for 4 per cent of dementias in England. Fronto-temporal dementia is a rare form of dementia, encompassing Pick s disease, and affecting 2 per cent of people with dementia in England. It often affects the under 65s, with dramatic effects on behaviour and personality, rather than memory, in the early stages The incidence of dementia increases in certain groups, in particular those with learning disabilities. For example a population-based study of the prevalence and presentation of dementia in adults with Down's syndrome (A. J. Holland, J. Hon, F. A. Huppert, F. Stevens and P. Watson 1997) found the following level of incidence for people with Downs Syndrome: years 2 per cent 6

7 40-49 years 9.4 per cent years 36.1 per cent years 54.5 per cent. The symptoms of dementia vary but the frustrations and confusion associated with these can lead to challenging and aggressive behaviors, even in people who previously never exhibited such behaviors. This can make caring for people with dementia very challenging as can the manifestation of co-morbid conditions including mental health illnesses such as depression, psychosis and delirium as well as physical illness such as heart disease, diabetes and chronic renal failure. Most dementias are permanent and since deterioration is gradual the diagnosis is often delayed and treatment options therefore reduced. There is clear evidence that the earlier into the disease that dementia is diagnosed the better the outcomes for those with the illness and their informal carers, it will help with decision making and preparing the individual and their family for choices they will need to make in the future. Evidence also exists to support the use of memory stimulating exercises and social interaction to delay the development of the disease, while medicines may also help delay the progression of the condition and telecare and telehealth products are known to maintain independence for longer. There is no evidence that dementia can be prevented specifically, however dementia risk is highlighted in the National Strategy for heart disease, stroke and hypertension. Risks can be reduced by improved lifestyles such as weight loss, limited intake of alcohol, health checks and heart MOTs; what is "good for the heart is good for the brain". 2. Development of the Strategy 2.1 Policy Context This strategy is informed by national and regional policy including National Dementia Strategy, Living Well with Dementia (Department of Health; February; 2009) NHS Operating Plan released June 2010 (Revision to the NHS Operating Framework 2010/11; June 2010; Department of Health) It s Really Time to do Something Now! (West Midlands Strategic Health Authority; Dementia Clinical Pathway Group; April 2008) White Paper Equity and Excellence; Liberating the NHS July 2010 [Department of Health, July 1010] Quality outcomes for people with dementia: building on the work of the National Dementia Strategy (Department of Health, September 2010). In essence these policies affirm that due to the projected incidence of dementia and the associated costs (nationally and locally) we need to develop services which enable people to plan for their care and support needs, rather than react to crises as they happen. That is, we need early diagnosis and intervention to support people to live well with dementia. 7

8 With regard to the context for health care overall the White Paper places patients at the centre of health practice, charges GP consortia with responsibility for the commissioning of appropriate services, and calls for improved co-ordination of health and social care services. These developments will inform the evolution of services for people with dementia and the implementation of this strategy over the next five years. The new coalition government have issued a new implementation plan for the national dementia strategy which focuses on the following four key areas: Early intervention Care homes Improvements in acute care Use of anti-psychotics. These align with existing intentions within the local strategy but we will clearly need to respond to any national requirements as they are announced. 2.2 Local Needs Current data on prevalence across the county relies on the accuracy of data available from primary care as part of the Quality and Outcomes Framework (QOF). This relates to two principle indicators of dementia - the first being a register of all patients with dementia and the second a 15 monthly review of those with dementia. Data from the QOF locally shows that in 2009 / people had a formal diagnosis of dementia. Dementia is a complex illness to diagnose as individuals may not consult a GP with their symptoms as they may put them down to stress or simple aging. In addition some people displaying symptoms may live alone with no-one to pick up the signs of illness for them We know from Dementia UK research and use of the Hoffman and Harvey model that the local QOF based GP register is missing at least two thirds of the population with dementia, and therefore with the implementation of this Strategy from 2011 we expect to see a significant increase in the numbers diagnosed and a correlating increase in demand for services over the next five years, including services for people with young onset dementia. There are challenges around understanding the actual numbers of people with dementia known to health and social care services and their assessed need. This knowledge gap is, in part, a consequence of different data collection systems compounded by issues around diagnoses and coding. Although the Dementia Register is completed by GPs as part of the Quality Outcomes Framework (QOF) at present a dementia diagnosis is always made by an older adults' consultant. Initial analyses of dementia metrics across other health and social care data systems also show low numbers coded with dementia which results in a 'planning gap'. Therefore baselines need to be established now around the needs of individuals known to services and their support costs to model future demand and inform the 8

9 intelligence around public awareness campaigns, workforce development, peer support and future planning of provision in line with predicted disease progression. If known service users can be identified it should allow commissioners to estimate the 'hidden' community, who are likely to present in crisis, often as emergency admissions, so strategies for early engagement can be identified and implemented. The following tables reveal the likely prevalence of the disease in the county. Table 1: Estimated prevalence of dementia in Worcestershire (based on population estimates) All ages. Estimated Prevalence Bromsgrove Malvern Hills Redditch Worcester Wychavon Wyre Forest Districts Total Worcestershire Source: NHS Worcestershire Public Health Information Team Table 2: Estimated prevalence of dementia by type in Worcestershire 2010 (based on population estimates) over 65 years of age 2010 Estimated Dementia Bromsgrove Malvern Hills Redditch Worcester Wychavon Wyre Forest Worcestershire Prevalence Females Males Females Males Females Males Females Males Females Males Females Males Females Males Early on set Late on set TOTAL Source: NHS Worcestershire Public Health Information Team Table 3: Estimated prevalence of dementia by type in Worcestershire 2020 (based on population estimates) over 65 years of age 2020 Estimated Dementia Bromsgrove Malvern Hills Redditch Worcester Wychavon Wyre Forest Worcestershire Prevalence Females Males Females Males Females Males Females Males Females Males Females Males Females Males Early on set Late on set TOTAL Source: NHS Worcestershire Public Health Information Team 9

10 Worcestershire has the highest prevalence of dementia within the West Midlands (based on 2007 / 2008 figures) there are estimated to be7590 people with the condition. Prevalence of dementia is predicted to increase by three per cent per annum over the next 10 years so that by 2020 there will be an estimated people with dementia in the county. In addition there are estimated to be 165 people with young onset dementia in the county at present. This increasing prevalence reflects the fact that the county has a higher proportion of older people than other counties and the longer life that this population enjoys. In themselves these are clearly positive developments that we should celebrate. However for those with dementia it means that we require improved efficiency and effectiveness in the delivery of care and support services, whether paid for through the state or individual resources or provided informally by unpaid carers, if we are to cope with the demands facing Worcestershire. We need more coordinated systems for collecting and sharing data across agencies on services users and carers. This should include place of diagnosis, nature of diagnosis, service usage and carer information. This will enable more effective tracking of patients through the care pathway and support more effective commissioning of services to meet needs. 2.3 Local Services In 2008 and 2009 exercises were undertaken to identify dementia support services in the county across the statutory, voluntary or private sectors. Although incomplete the information determined from the local reviews has informed development of this strategy in relation to an understanding of gaps in service delivery, in particular with regard to: Staff skills and understanding Information advice and support services Inequity of provision across the county. The findings of the local service reviews and service mapping have been analysed and some of the key findings include: (i) Public awareness and understanding of dementia The Alzheimer's Society provide a wealth of information especially at a community level, working with a network of statutory and non statutory organisations such as Age Concern and lunch clubs. There are problems in accessing the right information at the right time. There is a lack of awareness around dementia prevention and focused activity with people who have high risk factors (stroke, alcohol misuse, hypertension, heart disease). 10

11 (ii) Access to early diagnosis Historically there not been a specialist diagnosis service for dementia. The Early Intervention and Diagnosis Service is now in place and will be providing countywide coverage by 2011/12. There are 4 Dementia Advisors across Worcestershire who provide support with post diagnosis care planning. This is critical role in navigating the system for service users and carers as early as possible. General practices require more understanding and awareness of dementia and the support services, including the new services available. (iii) Dementia support services across the pathway Worcestershire Mental Health Partnership Trust provide a range of specialist services for older adults with mental health problems. These include Community Mental Health teams, day support and inpatient services across the county. Worcestershire has a dementia specific domiciliary care service, the side by side service. Approximately 900 individuals are currently receiving the side by side service. Admiral Nurses who specialise in dementia look after those with dementia, help them to gain the services they need, provide training for carers of and relieve the carer to enable them to get a break. The services cover areas of Wychavon (2 teams), Redditch and Bromsgrove. There is no service currently covering Wyre Forest. There is a good provision of day services within all major urban areas for older people. (11 in total with a good mix of statutory, third sector and private providers) There are issues regarding lack of services in rural areas especially Tenbury and South Worcestershire and capacity issues with only 110 places available across the county. However the lack of recording of the dementia status makes it impossible to calculate the current service usage for people with dementia. Intermediate care designed to facilitate discharge of patients from hospital or to prevent their admission to hospital is provided by a range of services including community hospitals and community based Intermediate Care Teams. There are issues of capacity of the hospitals and the ability of staff to take people with dementia which results in delayed discharge from hospital beds. There are a lack of rehabilitation and rapid response services. (iv) Carer support There is a good programme of carer training. The flexible breaks services provides thousands of hours of regular breaks each year, many for carers of people with dementia. Voucher Day Breaks enables Carers to cash in a voucher for up to 4 hours per week for relief of caring duties, this voucher pays for a sitter to stay with the person with dementia. 11

12 There is countywide provision of support service for people with Young Onset Dementia and their carers but the capacity of service is low given known prevalence. There are a number of peer support groups for people with dementia and their carers. These are mainly provided by the Alzheimer's Society. There is an issue of inequity of support groups across the county and these groups are reliant on short term grant funding. There is a shortage of assisted technologies across the county. (v) Care/Nursing Homes There are 100 registered Care and Nursing homes for people with Dementia - number of beds in the care homes (3742) (55% of care home beds in Worcestershire). Of the number of patients with dementia known to be receiving a service (2751) 75% receive the service in a care/nursing home. 2.4 Key Themes From our analysis of the above three key themes have emerged that will underpin delivery of this strategy, and we will ensure these are central to all that we implement: Workforce development to ensure it is understanding and has the skills to deliver person centred care. Service user/patient, family and carer involvement as partners in the care of people with dementia. Effective monitoring and evaluation of the impact of the strategy. 12

13 3. Vision and Strategic Aims The vision for our strategy is informed by the vision in It s Really Time to do Something Now! released by the West Midlands Strategic Health Authority in Our vision is that: By 2014, all people with a suspected or confirmed diagnosis of dementia will access integrated, seamless, proactive and high quality services that encompasses all the expertise needed to meet the needs of people with dementia and those of their carer s. To deliver this vision our strategic aims are to: Raise public awareness and understanding of dementia in order to demystify and reduce the fear associated with the condition. Maximise the number of people with access to early diagnosis to enable people to plan for their care and support needs as the disease progresses. Develop key dementia support services with adequate resources to ensure that people with dementia receive appropriate support at all stages of their condition. Develop the understanding and skills of the workforce supporting people living with dementia to ensure a person centred care culture underpins the delivery of all services. 13

14 4. Strategy Outcomes The Department of Health s revised, outcomes focused implementation plan 2010/11 for Living Well with Dementia" seeks to drive up quality and improve dementia care services. It reflects a shift in emphasis from structures and processes towards priorities centred around putting patients and the public first; improving outcomes for people with dementia and their carers. This new outcomes-focused approach, will ensure greater transparency and provision of information to individuals, to enable people to have a good understanding of their local services, how these compare to other services, and the level of quality that they can expect. The Implementation Plan highlights 10 Quality outcome statements for people with dementia. These statements map onto the National Institute for Health and Clinical Excellence (NICE) Quality Standard for Dementia and to the objectives of the National Dementia Strategy: By 2014, all people living with dementia in England should be able to say: 1. I was diagnosed early. 2. I understand, so I make good decisions and provide for future decision making. 3. I get the treatment and support which are best for my dementia, and my life. 4. Those around me and looking after me are well supported. 5. I am treated with dignity and respect. 6. I know what I can do to help myself and who else can help me. 7. I can enjoy life. 8. I feel part of a community and I m inspired to give something back. 9. I am confident my end of life wishes will be respected. 10. I can expect a good death. Worcestershire welcomes the development of the National Dementia Declaration. The Declaration, supported by the Alzheimer Society will be launched in autumn 2010, and will be a call to action to improve the quality of life outcomes for people with dementia and their carers. Signatories will publish what they expect to achieve in helping people to live well with dementia and what they will do over the life of the Strategy to 2016 and beyond where possible. 14

15 5. Implementation, Governance and Review The implementation of this strategy will be taken forward by Worcestershire's Joint Commissioning Unit (JCU) on behalf of NHS Worcestershire and Worcestershire County Council's Adult and Community Services directorate. The JCU will report to the Dementia Implementation Group comprising key health and social care representatives, that has been specially set up to oversee development and delivery of the strategy, and for sign off of proposals for implementation. The JCU will also report to the wider stakeholder group, the Dementia Care Planning Partnership for consultation on and shaping of proposals. Finally and in response to the NHS White Paper we will also ensure reporting to the emerging GP commissioning consortia prior to their formal establishment. Carers are represented on the Care Planning Group and work is being undertaken around how their views and the views of service users can be incorporated in all developments. In order to take the strategy forward we will work with a host of partner organisations to deliver this strategy, both local and regional, including: Worcestershire NHS Mental Health Trust Worcestershire NHS Acute Hospitals Trust Worcestershire NHS Provider Arm Emerging GP Consortia Voluntary and Community Sector organisations Service user, patient and carer representative bodies West Midlands Strategic Health Authority University of Worcester Association for Dementias Studies. In partnership with the above groups the strategy will be re-freshed after three years and fully reviewed after five years to ensure its relevance to local needs at those times. 15

16 The organisational chart below highlights the governance arrangements for delivery of this strategy. 16

17 6. Priority Actions This section focuses on recommended priority actions for meeting identified strategic aims and outcomes. These priorities for actions reflect the current position in the county and where we desire to be in five years time. The themes of education and training, carer and service user involvement, and effective monitoring and evaluation are relevant to all of the actions specified. An action plan will be developed based on these actions with timeframes and funding arrangements. The effective management of integrated dementia care will be central and pathways will be developed where the actions support delivery of this. The longer term aspiration is to provide to the following: 6.1 Public and Professional Awareness People with dementia currently wait up to three years before reporting symptoms to their doctor. This is partly because 70% of carers report being unaware of the symptoms of dementia, 64% report being in denial about their relative having the illness, and 58% believe the symptoms to be just part of ageing. And also partly because 50% of the public believe that there is a stigma attached to dementia which puts people off reporting any potential symptoms 1.. Yet, perversely, people over 65 are more worried about developing dementia (39%) than cancer (21%), heart disease (6%) or having a stroke (12%). Only 31% of GPs believe they have received sufficient basic and post-qualification training to diagnose and manage dementia. In order to redress this we will: Strengthen the preventative and early intervention services targeting those people at higher risk of developing dementia syndrome Run a local dementia awareness raising campaign to make people aware of the signs and symptoms of dementia, in order that people access services for diagnosis, treatment and support. Develop information for people with dementia, their families and carers on the nature and impact of the condition and what support is available. Enhance training for health and social care staff in the statutory, private and voluntary sectors. Undertake a local public awareness campaign to challenge stereotypes and improve understanding. Ensure a voice for people with dementia, their families and carers in the development of future services. 1 Improving Services and support for people with dementia, NOA (2007) 17

18 6.2 Information and Advice At present access to and the quality of information and advice related to dementia is limited within the county. Clearly the availability of information and advice to help people live well with their dementia is vital to the success of this strategy. Therefore, we will: Develop targeting information to raise awareness of preventative and early intervention services. Develop accessible information for people with dementia, their families and carers on the nature and impact of the condition and what support is available. Ensure that key health and social care staff are able to offer appropriate advice or know where to signpost people with dementia, their families and carers at suitable points in their care pathway. Post evaluation of the Dementia Advisor Service review the future position of these roles in the pathway and increase access to these services. 6.3 Peer Support and Learning We know that there is real potential for people with dementia, their families and carers to benefit from peer support, this impacts by reducing social isolation, promoting self care, as a means of sharing experiences and learning from others, as a source of emotional support, and a means by which health and social care professionals can reach out with information and advice. Existing peer groups or 'cafes', where people with dementia, their families and carers are brought together with practical support from professionals or volunteers offer a tried and tested model for the further development of peer support. Therefore we will: Explore the development of current and new models of peer support to increase access to this across the county for the increasing numbers of people with dementia who will be diagnosed as a result of actions arising from this strategy. 6.4 Workforce Development It is recognised that many key health care and social care staff, whether in the statutory, private or voluntary sectors, lack suitable understanding of dementia and the skills or approach required to deliver high quality person centred care. Dementia is often seen as a challenging area of need that requires specialist medical based intervention, when in reality it is set to become the core business of all working in health and social care and as such we need to embed good practice across the entire sector. 18

19 Therefore we will: develop and deliver during a workforce training programme for all key health and social care staff in the statutory, private and voluntary sectors that equips them with the appropriate understanding, skills and knowledge to deliver person centred dementia care and support. Develop and roll out a training DVD and handbook to sustain the gains of this training programme. Evaluate the impact of this training from the point of view of staff participating but more importantly from the view point of people with dementia, their families and carers, with regard to the quality and effectiveness of the care and support received. Develop a culture of care practice within all key health and social care services where 'feelings matter most' and where those with dementia are recognised as individuals with unique and personal needs. 6.5 Supporting Families and Carers If we are to support people with dementia to self care and live well with dementia in the community following early diagnosis, it is imperative that families and carers are involved in the development and delivery of care and support plans as expert care partners, by health and social care professionals. Families and carers are the major source of care and support for people with dementia in the community, and we need to support them to continue providing that care and support while recognising their needs for a life of their own. There is a widening gap in the provision of carer support as younger people leave the county and older people move to Worcestershire in later life without family support, which will increase the need for paid carers. We know from the experience of services such as Admiral Nurses, Al's Way, Dementia Advisors and the psycho-educational programme run by the Mental Health Partnership Trust that carers of people with dementia can receive real benefits from targeted information advice and support., We need to build on these services to meet future demand. More information on these services can be found in the Glossary of Services (Appendix 1) Therefore we will: Ensure that the involvement of families and carers is recognised by health and social care professionals and acted upon at all stages in the care and support of people with dementia. Explore the development of enhanced information, advice and support services for families and carers. 6.6 Early Diagnosis and Intervention Locally it is estimated that only one-third of the people with dementia in the county have been identified and have a formal diagnosis; Yet we know that the later you 19

20 receive a diagnoses the harder it is to support those with dementia and their carers to manage the illness and make informed choices about how they want to live. If not diagnosed people often enter services at a point of crisis that could potentially have been avoided. It is no longer acceptable to avoid the issue of diagnoses simply because we cannot cope with the subsequent demand for care and support services. Given the high costs from a human and financial standpoint in the present population of people with dementia, it is imperative that we shift our model of care towards early intervention and support, to enable people to self care and live well with dementia in the community. Early intervention has also been shown to have many positive effects on the quality of life of family carers enabling them to maintain their caring role and reduce demands on health and social care services, particularly those in the acute sector. The Early Intervention and Diagnosis service provided by Worcestershire Mental Health Partnership Trust commenced in July The service will comprise preassessment information and counselling, and evidence based assessment. Sensitively sharing the diagnosis with the service user and their family/carer, providing appropriate interventions including information, care and support after diagnosis to enable people to live well with dementia, supporting carers and families throughout the process, and providing post diagnostic counselling. Alongside this recent development the piloting of Dementia Advisors who provide a care navigation role via information advice and support in the Redditch, Bromsgrove and Wyre Forest districts, signal our commitment to this agenda and we aim to build upon this success. Therefore we will: Ensure that all people with suspected dementia are professionally assessed and receive a full diagnosis from the new Early Intervention and Diagnoses Service in order that they can access appropriate care and support. Explore the potential expansion of Dementia Advisers to the whole county. 6.7 Social Care and Support at Home Our priority is for the care and support of people with dementia in their own home rather than in an institutional care setting. There are a range of generic care and support services that enable people to remain at home, maintain their independence, and prevent admissions to care homes and hospitals. These include home or domiciliary care, intermediate care or rehabilitation, telecare or telehealthcare, aids and adaptations, support with daily tasks such as housework or gardening, and support for the physical maintenance of the dwelling itself. All of these services will be required to varying degrees by people with dementia and it is therefore vital that all staff involved in delivery of these services are 20

21 engaged in our workforce training programme to ensure they have the understanding skills and knowledge to deliver person centred care and support. At present the potential use of services such as telecare and intermediate care to benefit people with dementia is limited and we need to target these services for future development. There are also dedicated home based services that specialise in the care and support of people with dementia, their families and carers, such as Admiral Nurses, Al's Way, Side by Side, and Dementia Advisers (see Appendix 1 Glossary of Services for further information). We need to ensure that these services are adequately resourced and that they work in partnership to achieve maximum benefits for people with dementia. Therefore we will: Engage all key health and social care staff concerned with delivery of home based services in the workforce training programme. Ensure that all key health and social care staff develop care and support packages that aim to prevent admission of patients to acute hospital services and care homes. agree a system for the shifting of resources from acute hospitals to community based health, care and support services, based on the number of prevented admissions. Ensure that intermediate care services allocate sufficient time to the rehabilitation of people with dementia. Improve joint working between dedicated home based services that specialise in the care and support of people with dementia, dedicated dementia care and support. 6.8 Support in the Community At present support for people with dementia, their families, and carers in the community is relatively limited with only the Alzheimer Society providing a dedicated support service that includes information advice and support via 'cafés' and peer support groups that entail the following: Peer support groups - Bromsgrove/Wyre Forest and Worcester Befriending Worcester and Wychavon Als café Evesham Als way - countywide Joe's café Wychavon. There are issues of inequity of support groups across the county and these services are reliant on external funding from specific grants. Therefore, we will: Continue to work closely with the Alzheimer's Society to support existing services and invested in a county wide Al's café project to pump prime the development of peer support groups to cover the gaps in county provision. 21

22 Build capacity in the voluntary and community sector through established grants/networks Upskill the workforce amongst key organisations such as Age Concern develop opportunities for meaningful day activities 6.9 Supported Housing and Care Homes The needs of people with dementia and their carers should be integral to the development and delivery of supported housing schemes. It has been demonstrated that people with dementia can benefit from the flexible care packages and support offered in sheltered or extra care housing, provided that appropriate opportunities for social interaction are available. As with other health and social care staff those working in supported housing schemes need the understanding and skills to deliver person centred care. It is estimated that one-third of people with dementia live in care homes and at least two-thirds of all people living in care homes have a form of dementia. Yet we know that the quality of care provided for people with dementia can be lacking. For example 54% of carers reported that their relatives did not have enough to do in a care home, and we know from local experience that the availability of activities and opportunities for occupation and interaction with staff or other residents is often limited in many homes. The quality of life in care homes affects physical and mental wellbeing, and if poor can result in extra pressures being placed on health and social care services. Therefore care homes need to ensure that person centred dementia care is a core element of their offer and not a specialist area that only a few homes cater for. We are addressing this issue at present through the delivery of a comprehensive training programme for care home staff that entails an assessment against the Worcestershire Care Home Dementia Standard. This has proven successful to date and we will continue to deliver the programme in 2011/12 and 2012/13. Also as a result of what is perceived to be challenging behavioural some care homes over rely on the use of anti-psychotic drugs to manage this behaviour. This over use needs to be challenged and can be re-dressed through application of improved person centred care and the creation of homes where meaningful occupation is built into day to day practice. The Mental Health Partnership Trust's new In Reach Team for care homes with their remit of working with individual residents will assist with this programme. Therefore, we will: Ensure that future supported housing and extra housing strategies clarify the importance of supporting people with dementia within mainstream schemes. Deliver a training programme for staff working in supported housing schemes and care homes that provides them with the skills and understanding to deliver person centred care. Support care homes to reduce the use of anti-psychotic drugs. 22

23 Continue the assessment of care homes in 2011/12 and 2012/13 against the local dementia standard to ensure we have a large number of care homes in the county that meet our requirements for future placements 6.10 Crisis and Respite Care In order to prevent or reduce the number and frequency of admissions to hospital or urgent respite care as a result of either carer breakdown, or a crisis of care for the person with dementia, all of which are both difficult and costly, we need to focus on effective advance planning. A key role of the Early Intervention and Diagnosis Service and Dementia Advisers is to ensure that both people with dementia and their carers can plan ahead for any emergencies that might arise. This will give them peace of mind and ensure a suitable response at the time of that emergency. Therefore we will: Embed emergency or contingency planning into the development of care and support plans for people with dementia and their carers as part of the service provided by the Early Intervention and Diagnosis Service and Dementia Advisers Specialist Mental Health Services Worcestershire Mental Health Partnership Trust is undertaking the modernisation of older adult mental health services across the county. The focus is around providing care and support in the most appropriate way and enhancing the provision for specialist dementia care. The following specific objectives have been identified: The definition and implementation of clear patient pathways to ensure that service users are only admitted to hospital when it is the most appropriate action, and that discharge routes are planned at an early stage. That patient care would be delivered through two facilities, one serving the North of the county, the other serving the South. Both facilities would be able to manage their beds flexibly to meet the needs of service users with both dementia and other mental illness. This would result in the creation of a single inpatient facility to serve the North of the County, enabling a concentration of skills and nursing capacity in one area. The proposed location is the Brookhaven site in Bromsgrove. The re-design of the existing inpatient facility serving the South of the county to ensure that the bed numbers for treating older people with dementia or other mental illness can be used more effectively. A reduction in the overall number of beds in line with what is needed for the county in the future Specialist Older Adult Community Mental Health Teams would continue to operate across the county. 23

24 The Modernisation Programme is underpinned by the extension of the Early Intervention and Diagnosis service and the implementation of clear patient pathways that ensure that service users are only admitted to hospital when it is the most appropriate action, and that discharge routes are planned at an early stage. This work follows the NICE clinical guideline for treating dementia, which states that people with dementia should be assessed and treated as far as possible within their own, familiar environment and exercising as much choice and selfdetermination as possible. By the end of 2011 the new buildings are planned to be in place and service users will benefit from clearer pathways, better environments with improved privacy and dignity as well as clear evidence-based therapeutic interventions, occupation and medical interventions. Therefore, we will: Progress the planned modernisation of the older adult mental health services to ensure that the above objectives are met so that specialist services can complement the more generic development of health and social care services across the county Medicines Management Within NICE guidance interventions for treating dementia include nonpharmacological interventions such as cognitive stimulation programmes and pharmacological treatment. With regards to pharmacological treatment three acetyl cholinesterase inhibitors are recommended as options for management of people with Alzheimer s of moderate severity only at present, although there is debate as to whether this can also be used for mild dementia with reports that it delays progression of the disease. In Worcestershire most districts have seen an increase in prescribing of drugs over the last four years, with use of cholinesterase inhibitors increasing by 28 per cent over three years to 31 March Yet some areas do appear to be under prescribing based on the estimated prevalence. Current dementia medication prescribing against estimated prevalence Total Items Prescribed Bromsgrove Malvern Hills Redditch Worcester Wychavon Wyre Forrest 2005/ / / /2009 Estimated prevelance 2007/08. Source: Prescribing data , Doncaster model generated estimates

25 However it must be noted that pharmacological treatment in the West Midlands is the lowest across the country. Current dementia medication prescribing across England, 2008/2009 The national guidance is to restrict the use of drugs to situations where it is required and to reduce their use to address 'challenging' behaviour. Therefore, we will: Audit practice to establish definitive prescribing figures. Ensure all people with a diagnosis of dementia have access to the appropriate anti-dementia drugs and all medication appropriate to diagnosed conditions is available. Ensure all dementia care staff are involved in and have access to training in medicines management, so that those prescribed medication receive it at the appropriate time. Ensure medicines management, including regular medicines reviews and medication concordance discussion by appropriately trained individuals are fully included in individual care plans for people with dementia. Measure the.use of anti psychotic medication in people with a dementia diagnosis in the community, care homes & NHS specialist units with 3 monthly reviews Develop guidance on what to do if a family member is given antipsychotics Hospital Care The majority of hospital patients on acute medical wards with dementia do not have a formal diagnosis and are not known to specialist mental health services. This is significant because hospitals are challenging environments for people with dementia with their cluttered ward layouts, poor signage and other hazards. This can result in poor quality of life and what is perceived to be resultant challenging behaviour. As a result people with dementia tend to spend longer in hospital than other patients and account for a high proportion of all patients with delayed discharges, 25

26 with the National Audit Office estimating that the excess cost of patients with dementia for average hospitals at more than 6 million per year. Our aim is that if hospital admission is needed, people living with dementia will receive good quality care whilst there and will be discharged at the earliest feasible date. This firstly requires increased early diagnosis to ensure that the needs of patients entering hospitals are known so that staff can respond to them. Once patients have gone into hospital all staff need to apply a person centred approach to their care which requires staff to be suitably trained to deal with their needs while in hospital. To support this approach the County Council has recently funded the appointment of two Support Workers who meet and greet patients with dementia (and their carers) when they enter the Alexander and Worcester Royal Hospitals to find out more about them, and ensure that all relevant information is passed onto nursing staff. As with care homes hospitals tend to over prescribe anti-psychotic medications to manage patients with challenging behaviours, and this needs to be re-dressed through improved care and support. Many hospital staff struggle to arrange suitable discharge packages for patients with dementia, partly because of a lack of knowledge of what is available or simply because those services do not currently exist. In particular the availability of rehabilitation or intermediate care services that are able to support people with dementia is an issue and one that we are addressing through the training programme. Therefore we will: Develop a care pathway from access to discharge, building on the intelligence gathered from a recent audit of practice in the local acute hospitals, which ensures that the dementia diagnosis is not the cause of prolonged stay. Deliver dementia care training to key hospital staff in acute and community settings to enhance their understanding and skills to support people with dementia. Include the Promoting Independence Service, Intermediate Care Teams and Community Hospital staff in delivery of the dementia care training programme to enhance their understanding and skills to support people with dementia End of Life Making plans for the end of one's life is a major issue for people with dementia since their illness results in loss of mental capacity and the subsequent ability to make decisions about this area of their life. A lack of diagnosis and subsequent care and support planning for many people with dementia, alongside limited hospice places, can often result at the end of life in people going into hospital as a default position. 26

27 As such just under a quarter of all dementia deaths occur within hospital while we know that the vast majority of people wish to die at home. We also know that approximately 70% of people with dementia die in care homes and yet their capacity to provide good quality care and support for people with dementia and manage the end of life period is limited in many instances. Conversely only 4% of people with dementia die at home, which could reflect the understanding and skills of staff working in these settings. Proportion of dementia deaths with an underlying cause of dementia Comm_estab_TYPE Total Care Home Elsewhere Home Hospital Other Grand Total Source: Registered Deaths data With improved access to early diagnosis we will be able to support people with dementia and their carers to plan ahead and avoid having to make crisis decisions that result in hospital admissions. With planned training of care home staff in the Gold Standard framework for end of life care, we will be able to ensure that more people can die in their chosen home setting. Similarly the training of home care staff in this Gold Standard will enhance the capacity of these services to support people at this stage of their life and enable more people to stay at home to die. Finally we need to improve the quality of palliative care for people with dementia as evidence suggests it is poorer than for those without cognitive impairments. For example, few people with dementia have access to hospice care and people with dementia often die with inadequate pain control. As such for any given disorder people with dementia have 4 6 times the rate of death than those who have no cognitive impairmentthis can only be redressed through improved understanding and skills for staff working in palliative care. Therefore, we will: Train care home and home care staff in the Gold Standard framework for end of life care to ensure that they can provide high quality support in those settings and prevent people going into hospital. Explore the training of staff working in palliative care to ensure they have the required understanding and skills to provide good quality care and support for people with dementia. 27

28 6.15 Young Onset Dementia Dementia has long been associated with the inevitable aging process yet significant numbers of people develop the condition under the age of 65. In Worcestershire it is estimated that there are 160 people with young onset dementia. The availability of services for people with young onset dementia is limited, with only the Al's Way service that provides meaningful activities for up to 20 clients, and a small number of Al's Cafes that provide peer support in certain parts of the county. In particular there is a lack of age-appropriate respite and rehabilitation services as well as longer term residential care. Therefore we need to ensure that the remit for all of the locally developed dementia services arising from this strategy includes the care and support of people with young onset dementia. Therefore, we will: Build into the specification for dementia services the requirement to work with people with young onset dementia. Increase investment into young onset dementia support services to increase capacity Build into the training programme for key health and social care staff the need to understand the specific issues related to young onset dementia Dementia and People with Learning Disabilities Nationally, about 20 per cent of people with a learning disability have Down's syndrome, and people with Down's syndrome are at particular risk of developing dementia.the prevalence of dementia in other forms of learning disabilities is approximately four times higher than the general population (Cooper 1997, Lund 1985, Moss and Patel 1993). Although there is no evidence that dementia affects people with learning disabilities in different ways to others, the National Dementia Strategy highlights people with dementia who have learning difficulties as being of particular risk from an increased risk of developing the condition, being additionally vulnerable from increased confusion regarding symptoms and diagnosis. Additionally, as per the general population, people with learning disabilities are living longer as a consequence of medical advances yet most people with dementia who also have learning disabilities, tend to develop the condition as younger onset rather than old age. This, combined with the fact that most individuals with learning disabilities tend to have multi-agency care packages, access to specialist dementia services can be even more complex than for those without learning disabilities. Locally, no agreed consistent services are in place and a lack of data processes compound the difficulties in assessing who has dementia with learning difficulties and therefore what the need is. 28

29 The Early Intervention and Diagnosis service must recognise the need for input from those who know the individual well enough to be able to communicate with them about their needs, for services to ensure equity of access to diagnosis and intervention and for support to be tailored to the needs of the service. Therefore, we will: Build into the specification for dementia services the requirement to work with people with learning disabilities. Build into the training programme for key health and social care staff the need to understand the specific issues related to people with learning disabilities who develop dementia Dementia in Prison A recent local needs assessment highlighted that the incidence of dementia in prisons was much higher than expected given the age range and numbers involved, with very high rates of young onset dementia identified. Estimated and reported prevalence of dementia within HMP Hewell, Worcestershire Prevalence Men (%) in general population Estimated number based on population System wide query dementia register Total This would suggest the need for dedicated in reach services that support the prison population which are focused on the needs of those with young onset dementia. Therefore, we will: Work with Prison Healthcare commissioners to raise the standard of dementia care in prisons, linking to the Workforce Development Programme and local Dementia Care Standards in Care Homes as appropriate Cultural Diversity Although we generally lack data on dementia within different ethnic communities in the county we do know that 6.1% of all people with dementia among Black and Minority Ethnic (BME) communities have young onset dementia, compared with only 2.2% for the UK population as a whole. 29

30 This suggests the need to ensure that future services, whether with a focus on young onset dementia or more generic, understand the cultural and social needs of local ethnic communities if they are to reach out and effectively support these groups. Therefore, we will: Ensure that there is a good understanding of the cultural and social needs of different ethnic communities in the county within the dementia services arising from this strategy. Monitor access to dementia services to ensure they are meeting the needs of BME communities Safeguarding People with dementia are known to be an at risk group in terms of abuse, particularly financial exploitation and neglect. Reliance on others for support to manage finances or intimate care can expose people with dementia to an increased risk of abuse. Additionally, the complex dynamics of caring relationships mean that people do not always report abuse or mistreatment, and this becomes even more problematic if the individual lacks the capacity to be able to complain. Staff in all settings need to be alert to the possibility of abuse and neglect, and be familiar with local arrangements for reporting concerns or allegations. All services should make sure that there is clear information available on how to complain about poor standards of care and report concerns. Therefore we will: Embed a safeguarding culture into the development and delivery of all dementia services through training and information on local arrangements for reporting concerns. 30

31 7. Commissioning To support delivery of this strategy a commissioning plan will be developed across health and social care identifying how all available resources are to be utilised to meet the strategic aims and outcomes identified. There is multi sector workstream looking at data improvement across Worcestershire as disparities in the coding of dementia mean that it is difficult to identify people with dementia who are receiving services. Consequently there are issues around understanding the hidden costs of dementia across the health and social care economy and explicitly linking this to investment allocations. Improved information on existing health and social care spend on dementia across non specialist services will support the planning of any future service redesign and development. Investment will also be allocated from older people's health and wellbeing funding and public health to support preventative services. The table below shows only the known (November 2010) planned expenditure on dementia specialist services across the County, namely Early Intervention, Dementia Advisors and Workforce Development. Health and Social Care Investment 2010/ / / /14 Recurrent investment Early Diagnosis & Intervention 450, , , ,000 Dementia Advisors 154, , , ,000 Admiral Nurses 90,000 90,000 90,000 90,000 Third Sector Support - Al's Way 72, , ,000 96,000 Third Sector Support - Peer Support 36, Telehealthcare - Safe Walking 15, Carers Support - Flexible Breaks 65,000 65,000 65,000 65,000 Carers Support - Dementia Awareness Training 21,808 21,808 21,808 21,808 Carers Support - Psycho Educational Programme 30,000 30,000 30,000 30,000 Dementia Growth Monies 369, ,000 69,000 0 Totals 1,302,808 1,530,808 1,326,808 1,270,808 Non recurrent Investment Workforce Training Programme 481, , ,000 0 The table above is indicative of the financial position as at November 2010 and maybe subject to review due to the current spending review. We will commission services that can demonstrate how they will improve outcomes for people with dementia, where their staff have the required understanding and skills to deliver person centred care, and where users, patients, families and carers are engaged as expert partners in any care and support delivered. All new investment will incorporate commissioning specifications and contracts that deliver to the outcomes focused implementation plan 2010/11 (page 14) 31

32 8. Summary Transforming the quality of dementia care in Worcestershire is a huge challenge for all aspects of the health and social care system. People with dementia, their families and carers, the wider public and professionals in health and social care all have their part to play in achieving this transformation and meeting the aims and outcomes of this strategy. We already have a platform for success with the following in place: Commitment across the health and social care sector. Partnerships to enable service develop. ] Dedicated investment in dementia services A suite of proactive clinicians and service providers in the statutory, private and voluntary sectors. The support of the University of Worcester's Association of Dementia Studies A baseline assessment of current needs and service delivery and performance. An understanding of future needs and aspirations. A clear vision with strategic aims and defined outcomes. A plan of priority actions to achieve success. A workforce training programme under development. The set up of the new Early Intervention and Diagnosis Service. The recruitment of Dementia Advisors and an Information officer. Enhanced delivery of the Admiral Nurse service. The rising projections for dementia prevalence will continue to be Worcestershire's major concern, and it is a crucial that we create a sustainable support system for people with dementia across our local health and social care economy. To deliver the strategy in full we need to implement it in a co-ordinated and joined up manner to ensure success. 32

33 Appendix 1 Glossary of Services Dementia Support Groups Services provided Location Dementia Support Provide up-to-date information & Worcester Worker signposting to relevant services for people with dementia & their carers Dementia Advisers Provide up-to-date information & signposting to relevant services for people with dementia & their carers Redditch Friends of the Elderly Friends of the Elderly Friends of the Elderly: Among Friends Kidderminster Al's Way Ed's Café Al's Café Black more House 10 place, 5 days, 52 weeks per year day care for moderate to severe dementia. Purpose built unit adjacent to respite unit. Person centred care. Referrals from SS & PCT. Aged 60+ Home support to older people in Malvern district with dementia & depression. Client allocated a home support worker and provided with support to enable daily tasks, well being, and quality of life maintained. No personal care. 62 clients per week. Referrals from agencies. 5 days provision, day care centre for mild to moderate dementia, 16 places per day. Flexible arrangements available. Self referral or through Older Persons Health and Social Teams Provide individual support to people of working age who have dementia An educational & supportive group in dementia care for individuals with dementia & their carers a monthly countywide support group for younger people diagnosed with a dementia before the age of 65, their family, friends & carers Provides respite and day care, better choices for older people Howbury Lodge Day Centre, Howbury House Resource Centre, Pickersleigh Grove, Malvern Malvern Home Support Service, 10 Priory Road, Malvern Kidderminster Worcester Bromsgrove & Redditch Worcester County Bromsgrove How bury Resource Centre Psychoeducational programme Side by Side Respite beds for people with dementia Support groups/training for carers and service users with EOD Support people with dementia with homecare, personal care Malvern County wide County wide 33

34 Others Monthly Support Group Drop-In Advice/Signpost ing group Alzheimer's Society - Dementia Support outreach Alzheimer's Society - Dementia Adviser Service Outreach Alzheimer's Society - Information Centre Alzheimer's Society- Keep in Touch Alzheimers Society - Als Café Alzheimer's Society - Alzheimer Café Evesham To support carers Provide information on dementia On-going support for people with dementia On-going support for people with dementia All welcome for those isolated from services Early stage dementia & family groups All welcome Kidderminster Wyre Forest, Kidderminster, Tenbury Wells Worcester Kidderminster Malvern, Kidderminster, Worcester, Bromsgrove, Wyre Forest Tenbury Wells Evesham Kidderminster Worcester 34

35 Appendix 2 National Dementia Strategy Pathway 35