Living Well With Dementia

Living Well With Dementia Hertfordshire s Joint response to the National Dementia Strategy: Living well with dementia Working in partnership Hertfordshire County Council NHS Hertfordshire Hertfordshire Partnership NHS Foundation Trust Alzheimer s Society Carers in Herts Age UK February 2009 to February 2014 1

Foreword 3 Introduction 4 What is Dementia? 5 National Context 6 Impact of Dementia in Hertfordshire 8 Young Onset Dementia 12 Objective 1: Improving public and professional awareness and understanding of dementia. Objective 2: Good-quality early diagnosis and intervention for all. Objective 3: Good-quality information for those diagnosed with dementia and their carers. Objective 4: Enabling easy access to care, support and advice following diagnosis. Objective 5: Development of structured peer support and learning networks Objective 6: Improved community personal support services Objective 7: Implementing the Carers Strategy. 14 16 18 20 22 24 26 Objective 8: Improved quality of care for people with dementia in general hospitals. Objective 9: Improved intermediate care for people with dementia Objective 10: Considering the potential for housing support, housing-related services and telecare to support people with dementia and their carers. Objective 11: Living well with dementia in care homes Objective 12: Improved end of life care for people with dementia. Objective 13: An informed and effective workforce for people with dementia. Objective 14: Reduced use of anti-psychotic medication. What we are planning to do in the future. 27 29 31 33 35 37 39 41 2

Foreword It has been exciting to witness public awareness of dementia rising at an unprecedented pace over the last few years. The condition is now regularly discussed at the highest levels of government, with all the main parties showing a desire to take action. In March 2012, David Cameron became the first Prime Minister to dedicate a speech to dementia as he launched his 'challenge on dementia', outlining plans to give a boost to dementia research, address quality of dementia care and increase understanding of the condition - something that would have seemed like a distant dream for dementia campaigners not so many years ago. It is important to remember though that high level talks and proposals, however important, do not improve people's lives on their own. It is up to us to turn these aspirations into actions for the 13,000 people living in Hertfordshire with the condition. In this report I see achievement after achievement since the original National Dementia Strategy in 2009. It seems unfair to highlight individual projects when there is so much amazing work going on, but I have been fortunate enough to witness the value of and support in delivering services to meet a number of NDS objectives. Alzheimer s Society delivers expert information provision cross county, peer support groups, Singing for the Brain, CRiSP training programmes for carers, dementia cafes and the highly innovative and successful Early Memory Diagnosis and Support Service (EMDASS). This is fully supported by Alzheimer s Society, providing highly trained dementia support workers working collaboratively with Hertfordshire Partnership Foundation Trust colleagues. We all have a role to play in improving the lives of people with dementia, and working as we have, as an integrated team of professionals; I believe we can be effective in assisting people to live well with dementia throughout their condition. I would like to thank commissioners and colleagues at Hertfordshire County Council who have worked tirelessly in collaboration with service providers, charities, voluntary sector organisations, service users and carers to deliver effective responses and robust services to meet these challenging NDS objectives. Of course, we are all aware that the challenge continues, with numbers likely to reach 14,500 by 2015 and budgets under increasing pressure. I am confident though that the successes we have achieved so far show that in the next few years we will go even further to help people to live well with dementia. I look forward to continuing on this journey with you. Erika Aldridge Locality Manager Hertfordshire Alzheimer s Society 3

Introduction Living well with Dementia: A National Dementia Strategy (NDS) was published in 2009. Subsequent to this the Department of Health published Quality Outcomes for people with dementia and from the National Institute for Health new Clinical Excellence quality standards and Technical Appraisals (TA217) were introduced. In March 2012, the Prime Minister launched his personal Challenge on Dementia. As a response to the NDS, Hertfordshire formed the National Dementia Strategy Implementation Group to take forward the implementation and delivery of the objectives set out in the above documents. The group is made up of Primary and Secondary Care professionals, Social Care professionals, Voluntary and Charitable organisations including carers and is currently Chaired by the Assistant Director for Adult Social Care for Hertfordshire. The purpose of the group is to provide an overarching perspective of how the objectives of the NDS can be implemented across the county in partnership with all stakeholders including Health and Social Care commissioners and providers to deliver responsive, seamless, evidence based services which can be flexed according to the changing needs of people with dementia as they age, their families and carers. The group aims to:- align investment opportunities and current resources to improve access to early, good quality diagnosis, treatment, support, information and advice. Improve the quality of life of those already living with dementia and their carers by ensuring health, social care staff and the private sector have the skills, resources and access to training and development to provide the best quality care and support through-out a person s lifetime. Focusing on how we can deliver support to people in familiar surroundings; preferably in their own homes to reduce the numbers of people moving prematurely into long term care or remaining in inappropriate acute settings. The group recognises the importance of person centred care and the principles of personalisation to ensure dignity and respect. By following these principles individuals and carers will have the opportunity to make choices regarding their own care needs, maximising opportunity for independence and improved quality of life. The pace of change within Hertfordshire continues to advance with the recent appointment of the Hertfordshire Health and Wellbeing Board. The Board has identified Dementia as a priority and is developing a work programme which will be published shortly. The Hertfordshire Community Services Plan www.hertsdirect.org looks beyond 2014 and is committed to helping all older people, including people with dementia, their families and carers to live well and maintain their wellbeing. 4

What is Dementia? The term dementia is used to describe the symptoms that occur when the brain is affected by specific diseases and conditions. The symptoms of dementia include loss of memory, mood changes and communication problems. Up until now, research indicates that little can be done to delay the onset and progression of dementia, however lifestyle changes such as having a good diet and daily exercise can reduce the risk or developing dementia in the future. This still rings true, although new developments in the future may well change the way dementia will be treated and even potentially be reversed. Dementia can be caused by a variety of illnesses which result in a progressive decline in memory, reasoning, communication skills and the ability to carry our daily activities. Some of the causes of dementia are listed below; Alzheimer s disease Vascular disease Dementia with Lewy bodies Fronto-temporal dementia (including Pick s disease) Behavioural or psychological symptoms (also known as Behavioural and Psychological Symptoms of Dementia BPSD) such as depression, aggression and wandering are also not uncommon. Dementia is a long term, progressive, terminal condition that impacts on a person s health, social circumstances and family life and has therefore been given specialist consideration in long-term commissioning strategies. 5

National Context In 2007 it was estimated that there were over 700,000 people living with dementia in the UK (570,000 in England) and that this figure is likely to double over the next 30 years. The average cost of caring for a person with dementia was estimated at 25,500 per year. 36% of these costs fall on informal carers, 41% on accommodation, 19% on social care and 8% on the NHS. Two thirds of people with dementia live in their own homes, many being supported by informal carers. The Department of Health (DH) announced in 2007 that dementia would be a national priority and Living Well with Dementia A National Dementia Strategy (NDS) was published by the Department of Health in February 2009. The DH acknowledged that dementia was the biggest challenge it had ever faced, largely due to the complexities of joining up health and social care departments and resources. The remaining five objectives are cross cutting and enable change to be implemented and include workforce development, commissioning, performance monitoring and evaluation, and research. In addition there is a commitment to ensuring both national and regional support for the implementation of the strategy. A further objective to reduce the use of anti-psychotic medication was added following Professor Banerjee s review into the use of antipsychotic drugs for people with dementia which was published in November 2009 The DH has confirmed it s commitment to the needs of people living with dementia and their carers with the implementation of the National Dementia Strategy as one of its priorities. This was reflected in a number of announcements and initiatives with the four priorities for dementia being: The vision in the National Strategy is that services and society should transform their approach and attitudes to enable people with dementia, and their carers, to live well with dementia, no matter what the stage of their condition or where they are in the health and social care system. This is in contrast to the current situation where in many services people with dementia are simply managed. In order to achieve this vision, 17 objectives were identified specifying improvements in three key areas. Objectives 1 to 12 are grouped under three main headings to support a defined pathway for commissioning services; Raising awareness and understanding, Early diagnosis and support Living well with dementia. 6 Good quality early diagnosis and intervention for all Improved quality of care in general hospitals. Living well with dementia in care homes. Reduced use of antipsychotic medication. The development and commissioning of high quality community personal support services will underpin each of the four priorities, as it supports early intervention, prevents premature admission to care homes and impacts on inappropriate admission to hospital and length of stay. The Government is committed to ensuring there is a greater focus on accelerating the pace of improvement in dementia care, through local delivery of quality outcomes and local accountability for achieving them. A key element of the outcomes-focused approach is ensuring greater transparency and provision of information to individuals.

Nine statements have been proposed which capture what people with dementia have said they aspire to, in terms of their health and social care systems. By 2014, all people living with dementia in England should be able to say: I was diagnosed early I understand, so I make good decisions and provide for future decision making I get the treatment and support which are best for my dementia, and my life Those around me and looking after me are well supported I am treated with dignity and respect I know what I can do to help myself and who else can help me I can enjoy life I feel part of a community and I'm inspired to give something back I am confident my end of life wishes will be respected. I can expect a good death Hertfordshire supports the nine outcomes and has developed a set of metrics and indicators to underpin the statements across the health and social care system and linking them to the 18 objectives set out in the NDS. This enables the NDS Implementation steering group determine how resources are interdependent on other parts on the system and make informed decisions on where to prioritise resources to achieve maximum impact. 7

Impact of Dementia in Hertfordshire The number of people living in Hertfordshire affected by dementia is set to rise by 11% for those aged 65 and over from 12,470 people in 2009 to an expected 14,926 people in 2014. Within Hertfordshire there have been consultations with the public, including family carers and people with dementia since the publication of the NDS in February 2009 to understand what services are commissioned across health and social care and within the voluntary sector. This has been used alongside a need to determine what will work best in achieving the aims of the National Dementia Strategy (NDS). NHS Hertfordshire, Hertfordshire Partnership NHS Foundation Trust and Hertfordshire County Council are working with a number of Voluntary agencies including the Alzheimer s Society, to achieve the agreed strategy transforming the quality and experience of dementia care for the residents of Hertfordshire. The Hertfordshire Joint Strategy follows the lead of the National Dementia Strategy, in focusing on the three themes of: 1. Raising awareness and understanding dementia; 2. Early diagnosis and support; 3. Enabling all to live well with dementia. The strategy group has been researching good evidence based practice which will lead to robust commissioning decisions on delivering the best possible care for people to which all stakeholders are signed up to. The Hertfordshire Joint Strategy aims to: raise awareness, make sure people are diagnosed earlier have high quality, cost effective services to help people impacted with and by dementia live well raise the standards of care delivered in the community and in bed based settings reduce the inappropriate prescribing of antipsychotic medication in dementia implement the NICE guidelines on the use of acetyl cholinesterase inhibitors in early dementia. To minimise the impact of dementia on so many people s lives, a coherent, coordinated approach is required that embraces all services, both within the statutory and third sectors. By jointly agreeing this development and implementation plan, Hertfordshire is and will transform the quality and experience of dementia care. In order to transform our commitments into reality this strategy will inevitably need to be a living document. The National Dementia Strategy relies on the development of good practice as a precursor to further developments and investment decisions. The purpose of this joint five year strategy for Hertfordshire is to ensure that the commissioning and provision of services for people with dementia and their families are; Comprehensive Person centred Clinically sound Value for money 8

The NDS (Department of Health 2009) clearly outlines the expectations of the government to ensure a better life for all those affected by dementia. In Hertfordshire, in excess of 90 million is currently being spent on people with dementia (however this figure is difficult to extract as a lot of people have multiple needs, and therefore the many needs are met by a wide range of services across a number of organisations). A Joint Dementia Commissioning Board, made up of representatives from Hertfordshire Partnership NHS Foundation Trust, Hertfordshire County Council, Hertfordshire Primary Care Trust, and many voluntary organisations that support people with dementia and their families, was established to oversee the development of the NDS. This board ensures that the people of Hertfordshire have the right services in place, at the right time and delivered to a high standard. Below shows the reporting structure for which all parties are engaged in the decision making process, along with external organisations. The three key principles of this strategy as stated are: 1. Improvement of awareness and understanding of dementia among the general public, health and care professionals, and employers enabling self-management and prevention 2. Ensuring the condition is diagnosed as early as possible to allow for early intervention and management of the condition; and 3. Delivering high quality care and support for those with dementia and their carers. The major factor to the success of this strategy will be how we provide appropriate services for people s immediate need as well as the growing need. The impact of this condition is multi-faceted and far reaching. We wish to take a holistic approach that encompasses the medical, social and environmental aspects including employment, housing, support and treatment. It will therefore be necessary to move away from traditional thinking in order to develop a flexible model that will deliver for the future. According to nationally published prevalence rates, the older people get, the more likely they are to have dementia. For people in their mid-to-late 60s, around 5% are predicted to have dementia for those aged 90 and over, more than a quarter are estimated to have dementia. Population estimates suggest that over the next five years, the older population is set to grow at a much faster rate than the working age population, as shown in the table below. In particular, the proportion of people aged 85+ and over is set to grow by 15% by 2015, compared with the working age population growth of just 2%. 9

Table 1: Population growth 2011-2015 18-64 year 65+ year 85+ year 2011 2012 2013 2014 2015 Growth 687,500 689,300 692,300 696,300 700,400 2% 173,900 179,800 184,700 188,300 191,800 10% 25,900 26,700 27,600 28,600 29,700 15% Broken down by districts, Broxbourne and East Herts are expected to see higher than average growth of those aged 85+. Graph 1: Older people s population growth 2011-2015 estimated to see a 17% increase, the highest of any district, and will overtake the St Albans district with the third highest number of dementia sufferers. Welwyn Hatfield and St Albans are likely to see the smallest increase. Stevenage and Watford, by virtue of their population size, and their younger age profile, have the smallest number of dementia sufferers. Table 2: Dementia estimates by District 2011-2015 District 2011 2012 2013 2014 2015 Growth % Dacorum 1,723 1,766 1,824 1,852 1,890 10% North Herts 1,663 1,675 1,764 1,800 1,875 13% St Albans 1,577 1,616 1,621 1,673 1,695 7% East Herts 1,546 1,629 1,671 1,734 1,811 17% Welwyn/ 1,345 1,341 1,391 1,427 1,421 6% Hatfield Hertsmere 1,314 1,345 1,388 1,393 1,467 12% Three Rivers 1,180 1,198 1,243 1,271 1,308 11% Broxbourne 1,030 1,065 1,073 1,107 1,169 13% Stevenage 809 811 844 898 913 13% Watford 809 839 847 848 901 11% Whilst these figures give an estimated indication of the prevalence of dementia within Hertfordshire, information is available on the total number of people who have a diagnosis of dementia. The Dementia List on the GP QOF Register, is a reflection of the numbers of individuals with a dementia diagnosis recorded within GP information systems, this Dacorum has the highest number of people estimated to have is published by NHS Hertfordshire annually. This enables a comparison dementia, and is expected to grow by 10% by 2015. East Herts is of how many people have been diagnosed and recorded with dementia compared to the expected number estimated as prevalent within the population. This data is available at GP Practice Level. 10

Using the data contained within GP Registers, this data can be aggregated up to District level based on the location of each individual GP Practice and compared against the prevalence data. We can estimate the number of people within a given population expected to have dementia compared to those diagnosed. This methodology does however assume that everyone registered at the GP practice also lives in the same district where the practice is based, Extrapolating the data for Hertfordshire the results are give in table 3 below. This is based on the 2010 figures. It is expected that revised figures for 2011/12 will be available in September 2012. We will then be in a position to measure any change in diagnoses levels recorded by GP s as a result of implementing the Early Memory Diagnosis and Assessment Service which was implemented in 2011. Graph 2: POPPI estimates on the QOF Dementia List Table 3: Dementia QOF as proportion of POPPI estimates District 65+ POPPI Dementia Estimate Number on QOF Dementia Register % on Register Broxbourne 994 319 32% Dacorum 1678 478 28% East Herts 1512 445 29% Hertsmere 1289 619 48% North Herts 1599 822 51% St Albans 1518 499 33% Stevenage 786 303 39% Three Rivers 1122 338 30% Watford 768 362 47% Welwyn/Hatfield 1307 497 38% The table illustrates that while North Herts has a large older population; it has the highest detection rate of all districts at 51%. Hertsmere also has a high detection rate at 48%. Dacorum has the largest population and the largest estimated number of individuals with dementia, but has the smallest detection rate at 28%. Following behind is the second largest district, East Herts at 29%. This information is displayed as a comparison to the Hertfordshire average of 37% of expected levels of dementia within the population of Hertfordshire. 11

Young Onset Dementia Estimates for Young Onset Dementia are is based on the Alzheimer's Society report, Dementia UK - the full report. The report gives rates for early onset dementia, in ten year age bands, from the age of 30, including numbers for males and females. Table 4: Young Onset Dementia estimates Age Range Per 100,000 males Per 100,000 females 30-34 8.9 9.5 35-39 6.3 9.3 40-44 8.1 19.6 45-49 31.8 27.3 50-54 62.7 55.1 55-59 179.5 97.1 60-64 198.9 118 Because the working age population is set grow at a much slower rate then the older population, the estimate numbers are small and are not set to increase significantly. Table 5: Young Onset Dementia estimates by district 2011 2012 2013 2014 2015 Broxbourne 23 23 23 23 23 Dacorum 38 37 37 38 38 East 36 37 37 37 37 Hertfordshire Hertsmere 26 26 26 26 26 North 33 33 33 33 34 Hertfordshire St Albans 34 34 34 34 34 Stevenage 19 19 19 19 19 Three Rivers 24 23 24 24 24 Watford 19 19 19 20 20 Welwyn Hatfield 26 26 26 27 27 Hertfordshire 277 275 276 279 284 12

Down s Syndrome People with Down s Syndrome are more likely than average to have dementia as they get older. Rates for dementia in people with Down's syndrome are estimated as follows: Table 6: Down s syndrome Dementia prevalence rates Age Range % 45-49 8.9 50-54 17.7 55-59 32.1 60-64 25.6 Table 7: Down s syndrome Dementia estimates for Hertfordshire People aged 45-54 predicted to have Down's syndrome and dementia People aged 55-64 predicted to have Down's syndrome and dementia 2011 2012 2013 2014 2015 13 13 14 14 14 22 22 22 22 23 Ethnic Groups Proportionally, the number of older people from Black or Minority Ethnic Groups diagnosed with dementia and known to services is small, but it will greatly increase as the current population ages. Some other general observation to this is around the barriers, perceived or otherwise that exist within BME communities, including language issues which arise due to the difficulty in translation of symptoms and terminology. There is a gap in how some groups receive treatment, and how different cultural beliefs reflect how open older people are to receive treatment from outside their community, as in many cultures the old are cared for by the family. Hertfordshire s Partners In order to offer a comprehensive service that offers choice and individualised support, it will be necessary to develop the provider market for Hertfordshire. These will need to work together to deliver a cohesive Care Pathway that best supports the person with dementia and their carers. The prevalence of dementia in people with Down's syndrome is estimated as 25.6% in people aged 60 and over with Down's syndrome. Applied to Hertfordshire, the numbers are very small, at 2 per year, and this is not estimated to change for the next five years at least. 13

Summary of National Dementia Strategy Objectives and Hertfordshire s Implementation Plan Objective 1: Improving public and professional awareness and understanding of dementia. What we aim to achieve and how this will affect service users and carers Public and professional awareness and understanding of dementia to be improved and the stigma associated with it addressed. This should inform individuals of the benefits of timely diagnosis and care, promote the prevention of dementia, and reduce social exclusion and discrimination. It should encourage behaviour change in terms of appropriate help-seeking and help provision. Daily life experiences and contacts are enhanced as the public are sufficiently informed and able to appreciate and respond to the needs of people with dementia and their carers. Similarly with health and social care professionals whereby service users and carers receive a positive experience and their needs are met as appropriate. How are we going to measure the effect? Increase in number of people with an awareness of dementia. Questionnaires and surveys to be delivered through statutory organisations and Carers Organisations. Feedback forms from public briefings, participations events and Dementia Carers Forums. 14

What we have achieved so far Held 6 Consultation events and 11 public briefings across Hertfordshire since the start of the NDS. The aim of these events have been to share common ideas and goals with service users & their carers, professional stakeholders and members of the public to ensure people of Hertfordshire are kept up-to-date with the work programme on dementia developed by the Hertfordshire National Dementia Strategy Steering Group Delivery of 5 countywide professional health and Social Care conferences, celebrating Good Practice in Dementia Care and updating the workforce on any new services that they will be able to use and take part in delivering. Including any national developments. Eg: developments in end of life care. Development in conjunction with the Alzheimer s society of a countywide Information Strategy, to ensure the information materials that are to be used/handed out are the most up to date taken from the Alzheimer s website and information centre. Communication with GP leads for each of the localities to ensure they are updated and also consulted on with any proposed changes or developments within their specific areas. Quarterly Dementia Care Forums set up in conjunction with Carers in Herts. These forums are used to update, inform and involve Carers on current services and current and future plans being developed and commissioned in implementing the objectives of the NDS. The Alzheimer's Society has run several carers support groups across the county which aim to provide support and information to carers and family members around dementia. The Dementia Cafes have also been providing information to carers and services users across Hertfordshire. In conjunction with the national dementia awareness campaign during winter 2011/2012, billboards were commissioned at local football and rugby grounds to encourage people who had noticed memory problems in their relatives or friends over the Christmas period to contact their GP for help. By achieving the above we should be able to deliver against the Quality Outcomes for people with Dementia statements; By continuously consulting and updating on, what is Dementia, treatments and opportunities to support; we hope to be able to achieve the following I was diagnosed early I am treated with respect I was diagnosed early I am treated with Dignity and Respect NICE quality statements People with dementia receive care from staff appropriately trained in dementia care People with suspected dementia are referred to a memory assessment service specialising in the diagnosis and initial management of dementia 15

Summary of National Dementia Strategy Objectives and Hertfordshire s Implementation Plan Objective 2: Good-quality early diagnosis and intervention for all. What we aim to achieve and how this will affect service users and carers All people with dementia to have access to a pathway of care that delivers: a rapid and competent specialist assessment; an accurate diagnosis, sensitively communicated to the person with dementia and their carer; and treatment, care and support provided as needed following diagnosis. The system needs to have the capacity to see all new cases of dementia in the area. People with dementia and their families and carers will be able to make informed choices, are empowered to take control of their lives and their condition to maintain their well being and independence for as long as possible. They can begin to plan what their future with dementia will look like by exploring their options with families, carers, health and social care professionals and voluntary organisations. How are we going to measure the effect? Increase in number of people being recorded with dementia within GP Practice Registers Quality Outcomes Framework (QOF) Increase in uptake of Early memory diagnosis and support service (EMDaSS) Greater uptake of information and resource packs. Increase in the numbers of people accessing social care and voluntary services, including an increase in Carer s assessments What we have achieved so far A new Early Memory Diagnosis & Support Service (EMDaSS) has been developed and been in place for 12 months in some area of the county - St Albans & Dacorum from January 2011 - East Hertfordshire from March 2011, - Watford, 3 Rivers & Borehamwood from June 2011, - Stevenage, North Hertfordshire & Welwyn/Hatfield from September 2011 An agreed protocol for all health professionals to be able to screen/ assess individuals appropriately for the new EMDaS service Appointment of 4 memory link nurses to be the conduits between the GP localities and the EMDaSS teams. 16

By Autumn 2012 Hertfordshire should begin to see increases in the number of people diagnosed with Dementia on GP practice registers and we will be able to monitor the types and severities throughout the monitoring data that the new service is to provide. Joint funding with Health and Social Care has provided Dementia Support Workers to each of the 4 new EMDaSS teams and a further four to work within the community supporting people who are newly diagnosed. There are an additional 4 community dementia support workers working directly within the Alzheimer; s Society Branches. All the support worker posts within the EMDAS service are employed via the Alzheimer s society but have very strong links with HPFT, health and community services, GP practices and the Acute services. Strong links with Carers in Hertforshire who provide training advice and mentoring for Carers or people with dementia on behalf of the Strategy. A programme of training for Carers has been developed and rolled out across the county by Carers in Herts. Development of the current Specialist Mental Health Teams for Older People (SMHTOP) as part of the introduction of the new EMDaSS service. Seven teams across the county have been reduced to four to mimic the county developments. This is again under review and will see further change as service redesign, new dementia path ways and changes to the delivery of social care for people with dementia are implemented from September 2012 onwards. Operational policies are now standardised across county to incorporate the Pathway of EMDaSS to SMHTOP. Contract service specifications are being updated to reflect best practice and new dementia pathways. Mugs for all GP practices were commissioned with the number of their local service to raise the profile and promote the service to GP s across Hertfordshire Quality Outcomes for people with Dementia statements: I was diagnosed early I get the treatment and support which are best for my dementia and my life NICE quality statements People with dementia receive care from staff appropriately trained in dementia care. People with suspected dementia are referred to a memory assessment service specialising in the diagnosis and initial management of dementia. People newly diagnosed with dementia and/or their carers receive written and verbal information about their condition, treatment and the support options in their local area. People with dementia have an assessment and an ongoing personalised care plan, agreed across health and social care that identifies a named care coordinator and addresses their individual needs People with dementia, while they have capacity, have the opportunity to discuss and make decisions, together with their carer/s, about the use of : - advance statements - advance decisions to refuse treatment - Lasting Power of Attorney - Preferred Priorities of Care. People with dementia who develop non-cognitive symptoms that cause them significant distress, or who develop behaviour that challenges, are offered an assessment at an early opportunity to establish generating and aggravating factors. Interventions to improve such behaviour or distress should be recorded in their care plan. People with suspected or known dementia using acute and general hospital inpatient services or emergency departments have access to a liaison service that specialises in the diagnosis and management of dementia and older people s mental health. 17

Summary of National Dementia Strategy Objectives and Hertfordshire s Implementation Plan Objective 3: Good-quality information for those diagnosed with dementia and their carers. What we aim to achieve and how this will affect service users and carers To provide people with dementia and their carers with good-quality information on the illness and on the services available, both at diagnosis and throughout the course of their care. People with dementia and their families and carers will make informed choices, take control of their lives and their condition to maintain their well being and independence for as long as possible. They can begin to plan how their future with dementia will look like by exploring their options with families, carers, health and social care professionals and voluntary organisations at a time that is right for them. How are we going to measure the effect? People will tell us they know where to go for information People will tell they know what services are available for them People will tell us they are confident in making choices regarding their care or the care of their loved ones. We will see more people take up and use advance statements We will see an increase in hits on local information websites (Hertshelp) We will see local networks develop outside the formal structures developed by statutory and non statutory services 18

What we have achieved so far The introduction of an countywide generic information pack to be given at the time of diagnosis from the EMDaSS teams that include locality specific up to date information, with further additional updates in the future at the time that is right for the individuals concerned. Introduction of the Dementia Cafes to provide locality specific updates on services and changes. Dementia forums run via Carers in Hertforshire to keep people up-to-date and provide 2 way feedback on information and advice needed. Carer mentoring is being developed to support carers in how to access services along with ensuring they find suitable links throughout their journey in caring. Countywide agreement of the Alzheimer s information only on providing information on the disease and ways of dealing with the onset of dementia. Development of a countywide Advance Care Directive booklet to be shared at the most appropriate time so that individuals and their carers have the chance to make decisions whilst they still have the capacity. Achieves the following NICE quality statements (1,3,4,5): People with dementia receive care from staff appropriately trained in dementia care. People newly diagnosed with dementia and/or their carers receive written and verbal information about their condition, treatment and the support options in their local area. People with dementia have an assessment and an ongoing personalised care plan, agreed across health and social care that identifies a named care coordinator and addresses their individual needs. People with dementia, while they have capacity, have the opportunity to discuss and make decisions, together with their carer/s, about the use of : - advance statements - advance decisions to refuse treatment - Lasting Power of Attorney - Preferred Priorities of Care. Achieves the following Quality Outcomes for people with Dementia statements: I understand, so I make good decisions and provide for future decision making I know what I can do to help myself and who else can help me 19

Summary of National Dementia Strategy Objectives and Hertfordshire s Implementation Plan Objective 4: Enabling easy access to care, support and advice following diagnosis. What we aim to achieve and how this will affect service users and carers To provide Dementia Advisers to facilitate easy access to appropriate care, support and advice for those diagnosed with dementia and their carers. People with dementia and their families and carers will make informed choices, take control of their lives and their condition to maintain their well being and independence for as long as possible. They can begin to plan how their future with dementia will look like by exploring their options with families, carers, health and social care professionals and voluntary organisations. How are we going to measure the effect? People will tell us they know where to go for information People will tell they know what services are available for them People will tell us they are confident in making choices regarding their care or the care of their loved ones People will tell us they access services they have chosen that are suitable for them We will see more people take up and use advance statements We will see an Increase in hits on local information websites (Hertshelp) 20

We will see local networks develop outside the formal structures developed by statutory and non statutory services We will see less people accessing crisis services such as the Intensive Outreach team and being admitted into inpatient units Waiting Times targets for services will be reduced What we have achieved so far 12 dementia support workers (DSW s) have been commissioned to integrate into and compliment the Early Memory and Diagnostic Assessment Service. Four will be based within the EMDASS teams and the remainder with the Alzheimer s society within local communities. All will be employed by the Alzheimer s society. These individuals are the responsible bodies to ensure the person with dementia and their carer is signposted and guided throughout the diagnosis. The DSW's will be the point of contact for people diagnosed with dementia to help navigate them through the health and social care systems and ensure they receive the relevant information they require at the right time. These individuals will be local experts, who will hold resources of local services available as well as any countywide or national information that would be helpful. They will also be the responsible bodies for updating Health and Social care professionals on any new initiatives that have developed in local areas. Achieves the following Quality Outcomes for people with Dementia statements: I understand, so I make good decisions and provide for future decision making I know what I can do to help myself and who else can help me Achieves the following NICE quality statements (1,3,4,5): People with dementia receive care from staff appropriately trained in dementia care. People newly diagnosed with dementia and/or their carers receive written and verbal information about their condition, treatment and the support options in their local area. People with dementia have an assessment and an ongoing personalised care plan, agreed across health and social care that identifies a named care coordinator and addresses their individual needs. People with dementia, while they have capacity, have the opportunity to discuss and make decisions, together with their carer/s, about the use of : - advance statements - advance decisions to refuse treatment - Lasting Power of Attorney - Preferred Priorities of Care. 21

Summary of National Dementia Strategy Objectives and Hertfordshire s Implementation Plan Objective 5: Development of structured peer support and learning networks. What we aim to achieve and how this will affect service users and carers The establishment and maintenance of structured peer support and learning networks will provide direct local peer support for people with dementia and their carers. It will also enable people with dementia and their carers to take an active role in the development and prioritisation of local services. People with dementia and their carers feel supported, are not isolated and develop friendships locally. It enhances individual well being and control. How are we going to measure the effect? Number of attendances at the Dementia Cafés Number and attendances at the Young Onset groups Number of attendances at the Carer support Groups Numbers of attendances at the Dementia forums Satisfaction surveys undertaken by Alzheimer's Society and Carers in Herts Reduced reliance on statutory health and social care services, less potential spend per head on social care and reduced outpatient attendances and GP visits. What we planned to do On winning the Department of Health bid for becoming a demonstrator site, the county plan was for 10 dementia cafes to be established across the county of which all sites were identified. The aim of the dementia cafes was to provide practical and emotional support to carers and people with dementia. What we have achieved so far Countywide Dementia Café's have been operational monthly since May 2010. Young Onset Dementia groups are meeting bi weekly across the county with further development in place to bring them in line with the Dementia Café format. Support groups have been set up for Carers and people with dementia across the county. Early peer support groups are working in conjunction with the EMDaSS teams and are being facilitated by Alzheimer Society workers Nine Singing for the Brain groups have been commissioned and are now in place across the county Development of Caring with Confidence course run by Carers in Herts to be adapted to become more Dementia Specific New training course, carer information support program (CRISP) being developed and provided by Carers in Herts. Carer representation on all of the local decision making boards for the NDS 22

Achieves the following Quality Outcomes for people with Dementia statements: I understand, so I make good decisions and provide for future decision making I know what I can do to help myself and who else can help me I can enjoy life I feel part of a community and I m inspired to give something back Achieves the following NICE quality statements (1,3,4,5): People with dementia receive care from staff appropriately trained in dementia care. People newly diagnosed with dementia and/or their carers receive written and verbal information about their condition, treatment and the support options in their local area. People with dementia have an assessment and an ongoing personalised care plan, agreed across health and social care that identifies a named care coordinator and addresses their individual needs. People with dementia, while they have capacity, have the opportunity to discuss and make decisions, together with their carer/s, about the use of: - advance statements - advance decisions to refuse treatment - Lasting Power of Attorney - Preferred Priorities of Care. 23

Summary of National Dementia Strategy Objectives and Hertfordshire s Implementation Plan Objective 6: Improved community personal support services. What we aim to achieve and how this will affect service users and carers Provision of an appropriate range of services to support people with dementia living at home and their carers. Access to flexible and reliable services, ranging from early intervention to specialist home care services, which are responsive to the personal needs and preferences of each individual and take account of their broader family circumstances. Accessible to people living alone or with carers, and people who pay for their care privately, through personal budgets or through local authority-arranged services. People with dementia and their carers can live well, live safely and maintain their independence. They have the knowledge, skills and plans in place to prevent a crisis or at least ensure that the chances of a crisis developing are minimised. Carers wellbeing is addressed through the provision of respite services targeted to meet the carers needs and carers feel they have had a meaningful respite experience. How are we going to measure the effect? Increase in uptake of community equipment services, Decrease in hospital admissions. Delay in admission to long term residential units. Reduction in access to crisis services. Reduction in acute admission. What we have achieved so far An audit was undertaken of Homecare services in relation to dementia in March/April 2010. Homecare providers along with Hertfordshire Community Services (HCS) and Specialist Mental Health Teams for Older People were interviewed regarding the current provision. Uptake of specialist dementia homecare services was very low. The contract specification was therefore revised in light of comments, interviews and local examples of best practice. This has been approved by HCS Management Board and is now being implemented across the county and is being monitored by commissioners. Uptake of the service should improve alongside reduced admissions to residential care homes The New Specialist Dementia Homecare has addressed the concerns of the NDS Quality Of Care working group and has finalised a specification to ensure that the service delivers the required care based on need rather than timings. A Training programme is in place for all dementia home care providers. Current Health and Community Services contracts stipulate that at least 15% of the entire home care provider s workforce should be trained in dementia awareness, Health and Community Services have developed training for home care providers to access. This is to be reviewed as the needs increase/ change and throughout the Specialist Dementia Homecare Service. As a first step, HPFT are reviewing the service model for how the Day Hospitals will function as part of the overall Mental Health Services for Older People Service Review. 24

The Joint Commissioning Team will be jointly working with HPFT in agreeing the new service model for day hospitals and how day services for older people can compliment each other and to examine what additional services are required by service users in the future to maintain their independence and well being. All voluntary organisations providing services for people with a dementia or a suspected dementia have been working together to better understand what is provided, when and where and by whom. This enabled each organisation to signpost effectively to what would benefit the person with a dementia and or their carer. This will be developed in conjunction with the Hertfordshire Carers Strategy Forum. Additional funding for carers was allocated from NHS Hertfordshire to Health and Community Services to implement the Carers Strategy which encompasses people with dementia. Achieves the following Quality Outcomes for people with Dementia statements: 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 I can enjoy life People with dementia, while they have the capacity, have the opportunity to discuss and make decisions, together with their carer/s, about the use of: - advance statements - advance decisions to refuse treatment - lasting power of attorney - preferred priorities of care People with dementia who develop non-cognitive symptoms that cause them significant distress, or who develop behaviour that challenges, are offered an assessment at an early opportunity to establish generating and aggravating factors. Interventions to improve such behaviour or distress should be recorded in their care plan People with suspected or known dementia using acute and general hospital inpatient services or emergency departments have access to a liaison service that specialises in the diagnosis and management of dementia and older people s mental health Achieves the following NICE quality statements (1,3,4,5,7,8): People with dementia receive care from staff appropriately trained in dementia care People newly diagnosed with dementia and or their carers receive written and verbal information about their condition, treatment and the support options in their local area People with dementia have an assessment and an ongoing personalised care plan, agreed across health and social care that identifies a named care coordinator and addresses their individual needs 25

Summary of National Dementia Strategy Objectives and Hertfordshire s Implementation Plan Objective 7: Implementing the Carers Strategy. What we aim to achieve and how this will affect service users and carers Family carers are the most important resource available for people with dementia. Active work is needed to ensure that the provisions of the Carers' Strategy are available for carers of people with dementia. Carers have a right to an assessment of their needs and can be supported through an agreed plan to support the important role they play in the care of the person with dementia. This will include good-quality, personalised breaks. Action should also be taken to strengthen support for children who are in caring roles, ensuring that their particular needs as children are protected. To ensure that carers maintain their wellbeing, and have the support available when required. Carers are informed of services available to them and know how to access them. Carers also have contingency arrangements in place which are known to statutory services and can be accessed and implemented in times of crisis. How are we going to measure the effect? Increased number of carers receiving an assessment via Hertfordshire Community Services. Reduction in access to crisis services. Reduction in acute admissions. Greater uptake of services and direct payments What we have achieved so far Dementia Carer's Forum being set up in conjunction with Carers in Herts. First forum being held Mill Green Golf Club - 21st July 2010. Rolling programme being developed. Living Well with Dementia Conference organised for Carers in April 2010. Report on findings published in July 2010 by Carers in Herts. Recommendations to be taken forward by the HCC Carers Group. Achieves the following Quality Outcomes for people with Dementia statements: Those around me and looking after me are well supported Achieves the following NICE quality statements (3,4,6,10): People newly diagnosed with dementia and or their carers receive written and verbal information about their condition, treatment and the support options in their local area People with dementia have an assessment and an ongoing personalised care plan, agreed across health and social care that identifies a named care coordinator and addresses their individual needs Carers of people with dementia are offered an assessment of emotional, psychological and social needs and, if accepted, receive tailored interventions identified by a care plan to address those needs Carers of people with dementia have access to a comprehensive range of respite/short-break services that meet the needs of both the carer and the person with dementia 26

Summary of National Dementia Strategy Objectives and Hertfordshire s Implementation Plan Objective 8: Improved quality of care for people with dementia in general hospitals. What we aim to achieve and how this will affect service users and carers Identifying leadership for dementia in general hospitals, defining the care pathway for dementia in a general acute setting and commissioning specialist liaison older people's mental health teams to work in general hospitals. People with dementia to be identified earlier so their needs are met. People with dementia will have the same outcomes as those without. They will have similar lengths of stay and do not develop additional co-morbidities whilst in acute care and that their nutritional needs will be well met tbrough better and more vigilant care. People with dementia will have their condition recognised and be treated with dignity and respect. Carers will have full confidence that their loved ones are safe and being cared for in a respectful environment by well trained staff who know how to cope with people with dementia. What we planned to do Identification of Senior Clinicians within Hertfordshire s general hospitals. Complete audit of current pathway for dementia within General Hospitals. Outcomes on audit to create new pathway led and championed for implementation by a Senior Clinician. To use the 'This is me' questionnaire for all patients with dementia to help them understand more about the care needed. Appointment of Dementia Liaison Nurses to work between the hospitals, specialist teams and social care to reduce the length of stay. Training/learning of all staff that may be involved with the pathway of patients with dementia especially on older people's wards. How are we going to measure the effect? Reduced length of stay in acute hospital. Reduced admissions into residential care setting. Reduction in re-admissions into acute care. 27

What we have achieved so far Both trusts within Hertfordshire have named Clinicians leading on the implementation of the NDS and have identified Ward champions for each of the locations where it is possible to have patients that may have a dementia or a suspected dementia. West, East and North Hertfordshire have all completed the Royal College of Psychiatry audit on dementia. This audit was completed in September 2010 and the results were published in Autumn 2010. The NDS Implementation steering group have been reviewing the results of the audit and the recommendations made and will ensure they are implemented and monitored. This work has now been started following on from the actions drawn up from the Audits that took place in the September 2010. Full details available on request: steve.malusky@hertfordshire.gov.uk Both trusts are now using the booklet when someone is admitted or when a person brings it along with them to hospital. Each Trust has an older people's liaison service which has been in place for two years, there is a need to increase the service for the future as the numbers of people with a dementia or a suspected dementia are increasing within the hospitals. Funding has been agreed to pilot an additional post within West Herts to help with admission avoidance. If a person needs to be admitted, to ensure that the right pathway is followed, including using and promoting the "This is Me" booklet and noting any dementia or suspected dementia within patient notes at point of entry into the hospital. If this proves to be a success then East Hertfordshire will adopt a samular post. Local Acute trusts have already started to put together training packages and some training is also being delivered by HPFT working in conjunction with acute trusts. A local strategy will be developed to take forward and ensure implementation into the future ensuring that the training developed is accessible and consistent across the county and meets national standards. Achieves the following Quality Outcomes for people with Dementia statements: I get the treatment and support which are best for my dementia and my life Achieves the following NICE quality statements (1,4,5,7,8): People with dementia receive care from staff appropriately trained in dementia care People with dementia have an assessment and an ongoing personalised care plan, agreed across health and social care that identifies a named care coordinator and addresses their individual needs People with dementia, while they have the capacity, have the opportunity to discuss and make decisions, together with their carer/s, about the use of: - advance statements - advance decisions to refuse treatment - lasting power of attorney - preferred priorities of care People with dementia who develop non-cognitive symptoms that cause them significant distress, or who develop behaviour that challenges, are offered an assessment at an early opportunity to establish generating and aggravating factors. Interventions to improve such behaviour or distress should be recorded in their care plan People with suspected or known dementia using acute and general hospital inpatient services or emergency departments have access to a liaison service that specialises in the diagnosis and management of dementia and older people s mental health 28

Summary of National Dementia Strategy Objectives and Hertfordshire s Implementation Plan Objective 9: Improved intermediate care for people with dementia. What we aim to achieve and how this will affect service users and carers Intermediate care which is accessible to people with dementia and which meets their needs. How are we going to measure the effect? Reduced length of stay in acute hospital. Reduced admissions into residential care setting. Reduction in readmissions into acute care. Increase peoples independence, uptake of more community based services What we planned to do To develop a Countywide Enablement Service. To ensure that people with dementia are not discriminated against accessing intermediate care services. To develop a single point of access for intermediate care to include people with dementia.to examine how specialist staff can be integrated into future intermediate care services as they develop. 29

What we have achieved so far The first step of this work has centred on the development of a countywide enablement service. This service is available and accessible to people with dementia on being discharged from an acute hospital and will also be developed to prevent future admissions. Only those people with very severe challenging behaviour will not be suitable for this service. An integrated single point of access service is being rolled out countywide which will ensure that people with dementia who will benefit from intermediate care can access the service. Achieves the following Quality Outcomes for people with Dementia statements: I get the treatment and support which are best for my dementia and my life People with dementia who develop non-cognitive symptoms that cause them significant distress, or who develop behaviour that challenges, are offered an assessment at an early opportunity to establish generating and aggravating factors. Interventions to improve such behaviour or distress should be recorded in their care plan People with suspected or known dementia using acute and general hospital inpatient services or emergency departments have access to a liaison service that specialises in the diagnosis and management of dementia and older people s mental health Achieves the following NICE quality statements (1,4,5,7,8): People with dementia receive care from staff appropriately trained in dementia care People with dementia have an assessment and an ongoing personalised care plan, agreed across health and social care that identifies a named care coordinator and addresses their individual needs People with dementia, while they have the capacity, have the opportunity to discuss and make decisions, together with their carer/s, about the use of: - advance statements - advance decisions to refuse treatment - lasting power of attorney - preferred priorities of care 30

Summary of National Dementia Strategy Objectives and Hertfordshire s Implementation Plan Objective 10: Considering the potential for housing support, housing-related services and telecare to support people with dementia and their carers. What we aim to achieve and how this will affect service users and carers The needs of people with dementia and their carers should be included in the development of housing options, assistive technology and telecare. As evidence emerges, commissioners should consider the provision of options to prolong independent living and delay reliance on more intensive services. People with dementia and their carers feel comfortable and safe within their communities. People with dementia and their carers have an active role in their community and do not feel isolated. How are we going to measure the effect? Reduced length of stay in acute hospital. Reduced admissions into residential care setting. Reduction in readmissions into acute care. Increase in time people spend in the community before accessing residential care. Involvement in community activities. Uptake in community alarms and equipment services. What we planned to do To increase the knowledge of health and social care staff as to what is available and its benefits in terms of assisted technology. To ensure that occupational therapists and other health and care professionals are aware of how a person's home can be adapted to meet the needs and support home living for longer. To look at what is currently available in terms of supported living and extra care housing for people with dementia and ensure future demand and capacity are aligned. What we have achieved so far To date this area of work has not yet been undertaken within the NDS Implementation Steering Group, but it is recognised that work within the county is being developed. This needs to be either incorporated or reported into the work programme of the Quality of Care group. The Hertfordshire Equipment Service does highlight any new technologies it comes across to the Joint Commissioning Team and the Specialist Mental Health Teams within HPFT. The Joint Commissioning Team has contributed over 15,000 to the Equipment Service to test out new technologies for people with dementia over the last 12 months some of which has been very successfully applied The Quality of Care Group has yet to examine this theme as part of its work programme. 31

Achieves the following Quality Outcomes for people with Dementia statements: I get the treatment and support which are best for my dementia and my life Achieves the following NICE quality statements (1,4,5,7,8): People with dementia receive care from staff appropriately trained in dementia care People with dementia have an assessment and an ongoing personalised care plan, agreed across health and social care that identifies a named care coordinator and addresses their individual needs People with dementia, while they have the capacity, have the opportunity to discuss and make decisions, together with their carer/s, about the use of: - advance statements - advance decisions to refuse treatment - lasting power of attorney - preferred priorities of care People with dementia who develop non-cognitive symptoms that cause them significant distress, or who develop behaviour that challenges, are offered an assessment at an early opportunity to establish generating and aggravating factors. Interventions to improve such behaviour or distress should be recorded in their care plan People with suspected or known dementia using acute and general hospital inpatient services or emergency departments have access to a liaison service that specialises in the diagnosis and management of dementia and older people s mental health 32

Summary of National Dementia Strategy Objectives and Hertfordshire s Implementation Plan Objective 11: Living well with dementia in care homes. What we aim to achieve and how this will affect service users and carers Improved quality of care for people with dementia in care homes by the development of explicit leadership for dementia within care homes, defining the care pathway there, the commissioning of specialist in-reach services from community mental health teams, and through inspection regimes. To ensure people with dementia are safe, comfortable and well fed and hydrated and play an active role as possible in their daily living. Relatives have the comfort that their loved ones are being well looked after and treated with dignity and respect. How are we going to measure the effect? Reduction in admission rates to local acute hospitals from care homes for example relating to trips and falls. Care Quality Commission inspection reports and ratings. Reduction in use of anti-psychotics. Staff training programmes. Contract monitoring and accreditation What we planned to do Review of current contracts with care homes for dementia to ensure meaningful activities nutrition and needs of dementia clients are being met. Work with the Care Quality Commission and Continuing Care and End of Life (EoL) commissioners within NHS Hertfordshire and ensure Hertfordshire care homes meet the required standards to care for people with dementia. 33 Identification of heads within each care home to be responsible for quality. To see a reduction in the use of antipsychotics. To have a named link from the memory maintenance service/ specialist teams to each of the care homes for advice and support. What we have achieved so far The Quality of Care Group has developed a more robust accreditation process which has been implemented. This requires high standards including nutrition, personalisation, training and staffing. 70% of eligible residential care homes have been accredited; nursing homes have now been invited to also apply. The training available to homes has been analysed and found to meet needs. Care home availability has been mapped and found adequate. An audit has now taken place with NHS Hertfordshire to establish which practices are prescribing for which care home and then the information needs to be analysed and an action plan drawn up and shared with the care homes. Further work needed with HPFT in terms of allocation of workers for each of the homes across Herts. Achieves the following Quality Outcomes for people with Dementia statements: I get the treatment and support which are best for my dementia and my life

Achieves the following NICE quality statements (1,4,5,7,8): People with dementia receive care from staff appropriately trained in dementia care People with dementia have an assessment and an ongoing personalised care plan, agreed across health and social care that identifies a named care coordinator and addresses their individual needs People with dementia, while they have the capacity, have the opportunity to discuss and make decisions, together with their carer/s, about the use of: - advance statements - advance decisions to refuse treatment - lasting power of attorney - preferred priorities of care People with dementia who develop non-cognitive symptoms that cause them significant distress, or who develop behaviour that challenges, are offered an assessment at an early opportunity to establish generating and aggravating factors. Interventions to improve such behaviour or distress should be recorded in their care plan People with suspected or known dementia using acute and general hospital inpatient services or emergency departments have access to a liaison service that specialises in the diagnosis and management of dementia and older people s mental health 34

Summary of National Dementia Strategy Objectives and Hertfordshire s Implementation Plan Objective 12: Improved end of life care for people with dementia. People with dementia and their carers to be involved in planning end of life care which recognises the principles outlined in the Department of Health End of Life Care Strategy. Local work on the End of Life Care Strategy to consider dementia. What we aim to achieve and how this will affect service users and carers To develop a local End of Life care plan to ensure that people with dementia and their carers are involved throughout their diagnosis on how they would like their own end of life to be, including pain managing, and those involved in making decisions. How are we going to measure the effect? The numbers of people choosing to complete Advance care Plans The numbers of people who die in accordance with the wishes of the Advance care plan What we planned to do Review of current contracts with care homes. 10 for dementia to ensure meaningful activities nutrition and needs of dementia clients are being met. Work with the Care Quality Commission and Continuing Care and End of Life (EoL) commissioners within NHS Hertfordshire and ensure Hertfordshire care homes meet the required standards to care for people with dementia. Identification of heads within each care home to be responsible for quality. To see a reduction in the use of antipsychotics. To have a named link from the memory maintenance service to each of the care homes for advice and support. What we have achieved so far The development with all Health partners on the Hertfordshire Advance Care Plan that is shared with all people coming into the Dementia Service via EMDaSS and to be rolled out with those people already in the system that have the ability to still make choices. Appointment of a End of Life Specialist for the county tot work with all sectors on advising what good End of Life look likes for a person with Dementia The delivery and training of the Liverpool Care Pathway. Achieves the following Quality Outcomes for people with Dementia statements: I am confident my end of life wishes will be respected. I can expect a good death 35

Achieves the following NICE quality statements (1,4,5,6,9): People with dementia receive care from staff appropriately trained in dementia care People with dementia have an assessment and an ongoing personalised care plan, agreed across health and social care that identifies a named care coordinator and addresses their individual needs People with dementia, while they have the capacity, have the opportunity to discuss and make decisions, together with their carer/s, about the use of: - advance statements - advance decisions to refuse treatment - lasting power of attorney - preferred priorities of care Carers of people with dementia are offered an assessment of emotional, psychological and social needs and, if accepted, receive tailored interventions identified by a care plan to address those needs People in the later stages of dementia are assessed by primary care teams to identify and plan their palliative care needs. 36

Summary of National Dementia Strategy Objectives and Hertfordshire s Implementation Plan Objective 13. An informed and effective workforce for people with dementia. Health and social care staff involved in the care of people who may have dementia to have the necessary skills to provide the best quality of care in the roles and settings where they work. To be achieved by effective basic training and continuous professional and vocational development in dementia. What we aim to achieve and how this will affect service users and carers Learning and development of existing training opportunities across Health, Social Care and the 3rd sector organisations that are commissioned to ensure people with Dementia and their carers get support from staff that are appropriately trained 8in the most up-to-date Dementia care possible. How are we going to measure the effect? The numbers of people attended the differing levels of training provided across the county Feedback from service users and carers that they feel they were appropriately support by staff that understood the condition of Dementia. 37

What we planned to do Review of current contracts with care homes. 10 for dementia to ensure meaningful activities nutrition and needs of dementia clients are being met. Work with the Care Quality Commission and Continuing Care and End of Life (EoL) commissioners within NHS Hertfordshire and ensure Hertfordshire care homes meet the required standards to care for people with dementia. Identification of heads within each care home to be responsible for quality. To see a reduction in the use of antipsychotic. To have a named link from the memory maintenance service to each of the care homes for advice and support. What we have achieved so far The development with all Health partners on the Hertfordshire Advance Care Plan that is shared with all people coming into the Dementia Service via EMDaSS and to be rolled out with those people already in the system that have the ability to still make choices. Appointment of a End of Life Specialist for the county tot work with all sectors on advising what good End of Life look likes for a person with Dementia The delivery and training of the Liverpool Care Pathway. Achieves the following Quality Outcomes for people with Dementia statements: I am confident my end of life wishes will be respected. I can expect a good death Achieves the following NICE quality statements (1,4,5,6,9): People with dementia receive care from staff appropriately trained in dementia care People with dementia have an assessment and an ongoing personalised care plan, agreed across health and social care that identifies a named care coordinator and addresses their individual needs People with dementia, while they have the capacity, have the opportunity to discuss and make decisions, together with their carer/s, about the use of: - advance statements - advance decisions to refuse treatment - lasting power of attorney - preferred priorities of care Carers of people with dementia are offered an assessment of emotional, psychological and social needs and, if accepted, receive tailored interventions identified by a care plan to address those needs People in the later stages of dementia are assessed by primary care teams to identify and plan their palliative care needs. 38

Summary of National Dementia Strategy Objectives and Hertfordshire s Implementation Plan Objective 14. Reduced use of anti-psychotic medication. 39 What we aim to achieve and how this will affect service users and carers To reduce the number of people with dementia prescribed anti-psychotics by GP s in Primary Care To reduce the number of people with dementia prescribed anti-psychotics by GP s in Care Homes To reduce the number of people with dementia prescribed anti-psychotics in local Acute Hospitals To reduce the number of people with dementia prescribed anti-psychotics with HPFT inpatient units. To ensure staff working in local units are care homes are sufficiently trained to deal with people with dementia and can implement appropriate care strategies to maintain calm and well being. What we planned to do Undertake a countywide audit of the prescribing of anti-psychotic medication to people with dementia in - East and North Herts NHS Trust - West Herts Hospitals NHS Trust - HPFT - GP Practices across Hertfordshire Develop a Hertfordshire Protocol for prescribing anti-psychotic medication to people with dementia

What we have achieved. Over the last 12 months a countywide protocol to reduce the use of anti-psychotics has been developed jointly with local Acute trusts, GP s, HPFT, JCT and voluntary organisations following a number of focus groups. This pathway The Hertfordshire Care Pathway on the Management of Behavioural and Psychological Symptoms of Dementia (BPSD) been agreed by all parties and is in circulation for all to use when looking at prescribing an anti-psychotic drug for people with a Dementia. The Pathway has been shared with GPs, is available on the NHS Hertfordshire website and the local Hertfordshire Association of Care Home Providers Website Achieves the following Quality Outcomes for people with Dementia statements: I get the treatment and support which are best for my dementia, and my life I am treated with dignity and respect Those around me and looking after me are well supported In order to understand this data we need to map the information received to localities and then Care Homes within each locality mapped to practices. This will then allow for auditing Homes in terms of meaningful activities and alternative therapies Following the pathway design the next action was to understand the current levels of prescribing within the local acute general hospitals, HPFT and GP practices. The audits on each of the local hospitals has taken place and have full action plans to work from to begin to achieve an overall reduction in anti-psychotics and also to consider and take up alternatives to medication where appropriate. HPFT have undertaken their internal audits. The final and largest piece of work yet to start is the audits of prescriptions of GP s. There is a need to understand the number of people within Hertfordshire who are possibly being prescribed as a way of managing behaviour that could possibly be treated with non pharmacological methods. 40

What we are planning to do in the future Dementia is everybody s business and is not exclusive to a single strategy or piece of work, it needs to be part of everyone s business involved in the well being of population. There are national and local policy documents and strategies developed on housing, environment, carers, long term conditions, intermediate care, older people, safer communities, life long learning, public health and well being all of which will touch people with dementia. Hertfordshire County Council has published the Health and Community Services Plan 2012/2015 which sets out its vision for social care. The 3 key themes within this document are: 1. To inform, advise and prevent. 2. Re-ablement and Recovery 3. Personalisation. All the above key areas includes people with dementia, their families and their carers. The work programme for dementia developed by the National Dementia Steering Group will link and work with reference to these themes. In addition the recently formed Hertfordshire Health and Wellbeing Board is currently working through and agreeing its key priority area. Dementia will be a key priority area, As stated the Hertordshire National Dementia Strategy Steering Group recognises that many other health, local and national government agendas and work programmes being delivered will also affect people with dementia, their families and carers. The NDS steering group will ensure that the voices of people with dementia and their carers will impact on and influence others to improve services and the well being for people with dementia and their families and carers. The following is the current work programme as it stands which is overseen by the NDS Steering Group. 1. Raising Awareness. To continue to work closely with the Alzheimer s Society, Age UK and the British Red Cross to increase public awareness of dementia. The team will work alongside public health, HCS, the Clinical Commissioning Groups, local acute hospitals, the Alzheimer s Society, Age UK and other stakeholders to begin to work towards understanding what constitutes a dementia friendly community and how we can go about piloting / establishing such a concept. To increase public awareness of the links between excessive alcohol consumption and the risk of developing a dementia related illness. 41

2. Improving the Quality of Care in Hospitals. To continue to work with local acute hospitals to improve the quality of care for people with dementia in our local hospitals: - West Hertfordshire Hospitals NHS Trust - East and North Herts NHS Trust. To continue to build financial incentives into the NHS Contracts with the local hospitals to meet the following targets: - This includes implementing a screening tool for older people to identify people with dementia - To develop an assessment and referral pathway for people with dementia - To increase dementia training and workforce development And to develop future targets for hospitals to ensure services for people with dementia constantly improve until people with dementia report similar outcomes from hospital stays as those without dementia. In addition West Herts Hospital in Watford are developing a specialist unit for Cognitive Impairment. 3. Improving the quality of care for people with dementia within care home. To work with care homes across the county to implement the recommendations set out in the Alzheimers Society Report: Home from Home (2007) To review and update the county s dementia accreditation scheme to ensure that standards are clear and measurable To review the county s financial assistance programme for achieving accreditation To extend the accreditation scheme from dementia residential homes/beds to dementia nursing homes To work with the Care Quality Commission to check accredited homes have a continuous improvement plan in place to meet the needs of people with dementia. To ensure that the appropriate training is available for care homes and that there is sufficient training places commissioned to meet the demands of the staff required to deliver the service. To ensure that there are a sufficient number of appropriate care home places available spread across the county which satisfies local demand, both of people with dementia and their carers. To work towards enhancing and improving psychiatrist liaison services for people with dementia within acute hospitals. To ensure that people with dementia can directly access and benefit from enablement services which can facilitate their discharge from hospital and maintain their independence for longer. To ensure that people with dementia can access the same hospital discharge services available to those without dementia. (Hospital at Home Services) 42

4. Reduction in the prescribing of anti-psychotics in dementia To achieve all of the 11 recommendations set out in Professor Sube Banerjee s report: Time for Action (2010) To carry out a repeat audit of the prescribing of anti-psychotic medication across specialist services HPFT. (Prescribing Observatory for Mental Health UK Royal College of Psychiatrists) To carry out a repeat audit of the prescribing of anti-psychotic medication across local acute general hospitals and GP practices including Care Homes. To ensure Improved Access to Psychological Therapies (IAPT) proactively offer therapeutic interventions to people with dementia and their carers. To ensure information, support and training is available to carers to give them the skills needed to spot behavioural problems quickly, to seek help early and to deploy elements of non-pharmacological care themselves in the home. Work with GP s and local trusts to set up shared care protocols for GP s to prescribe alternatives to anti-psychotics (such as cholinesterase inhibitors or memantine) where appropriate Work with care homes to develop and implement training programmes on the non pharmacological management of behaviour and ensure that senior care home staff are available for training in the first instance To develop an in-reach service delivered by mental health specialists to work with care homes 5. Improving Palliative and End of Life Care for people with dementia. To raise awareness of the palliative and end of life care needs of people with dementia in Hertfordshire To work with the Early Memory and Diagnosis Assessment Service to ensure that 80% of those diagnosed with dementia are informed of and offered an Advanced Care Plan (CQUIN target for this year). To provide ongoing training on the Liverpool Care Pathway within HPFT and other providers. To provide pain assessment and management training with a target of 250-270 places within HPFT. To jointly work with the University of Hertfordshire on the Development of Dementia Champions, Community of Practice Network To jointly work with West Herts Hospital on specific Dementia/End of Life Care awareness training. 43

6. Support for Carers of People with Dementia To support carers of people with dementia. In conjunction with the Joint Hertfordshire Carers Plan, we will ensure that: Carers of people with dementia will be included as part of the pilot to develop a carer friendly community and carer friendly hospital so that a better understanding of the cost effectiveness of low level, Co-ordinated support to carers can be gained. Carers of people with dementia will be included in the development of Hertfordshires commitment to carers and ensure they are linked to the enhanced version of the Carers passport. There is a single point of access where carers can access information. Carers of people with dementia will be included in developing what the measures of success are for implementing the carers strategy. These could include the numbers of new carers identified, and how long carers have been caring for before receiving any support We will work with Carers to ensure that their rights, needs and expectations are clearly identified and written into service specifications with providers of dementia services. We will ensure carers have a voice through the development and then the establishment of Healthwatch Hertfordshire. We will develop and expand the Carers Champion model as agents of change. This includes the planned roll out of this model to all the GP surgeries in Herts Valleys CCG. We will work with Carers in Herts to develop a workable and resourced framework in which carers voices can be incorporating in the commissioning decision making process and into the work steams identified in implementing the objectives within the National Dementia Strategy. 7. Dementia Home Care To provide access to flexible and reliable services, ranging from early intervention to specialist home care services, which are responsive to the personal needs and preferences of each individual and take account of their broader family circumstances. Services need to be accessible to people living alone or with carers, and for people who pay for their care privately, through personal budgets or through local authority-arranged services. The needs of people with dementia and their carers to be included in the development of housing options, assistive technology and telecare. As evidence emerges, commissioners will work towards ensuring people have the choice of a range of options to prolong independent living and delay reliance on more intensive services. To where possible avoid the use of 15 minute home care calls for people with dementia. To develop solutions that facilitate more flexibility for clients and providers within care packages, including a reduction in the use of rigid time slots and a move towards a time allocated service which can be called off by service users and carers as required. Establish a home care provider forum focused on best practice in dementia care and which supports the improvement of local services. To audit home care providers on providing continuity of care to ensure people with dementia receive a consistent service from the same care workers. To set an improvement target on the number of workers attending to an individual based on the audit results. To seek to develop the local marketplace and build up the emarketplace to increase the range of providers and offer greater choice to the public. To develop and have accredited a training programme for learning for frontline care staff 44

8. Early Memory, Diagnosis and Assessment Service (EMDASS) The Hertfordshire EMDASS service has now been operational for a year across the county. Ongoing monitoring, evaluation and improvements in the delivery of the service are being planned and implemented. Additional funding has been made for extra nursing and support staff. Locations of the services are being reviewed in order to make them more community focused and move towards them being based in GP practices where possible. Additional events for GP s being developed to continually build relationships with local GP s and primary care to inform the community of the service and to promote its benefits. Service referral rates continue to be closely monitored Guidelines for cognitive impairment service to be developed Information requirements to be reviewed following feedback. 45