Living Well With Dementia

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1 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

2 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 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

3 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 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

4 Introduction Living well with Dementia: A National Dementia Strategy (NDS) was published in 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 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

5 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

6 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 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.

7 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

8 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 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

9 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

10 Table 1: Population growth year 65+ year 85+ year Growth 687, , , , ,400 2% 173, , , , ,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 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 District 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 % Watford % 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 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

11 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 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 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 % Dacorum % East Herts % Hertsmere % North Herts % St Albans % Stevenage % Three Rivers % Watford % Welwyn/Hatfield % 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

12 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 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 Broxbourne Dacorum East Hertfordshire Hertsmere North Hertfordshire St Albans Stevenage Three Rivers Watford Welwyn Hatfield Hertfordshire

13 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 % Table 7: Down s syndrome Dementia estimates for Hertfordshire People aged predicted to have Down's syndrome and dementia People aged predicted to have Down's syndrome and dementia 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

14 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

15 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

16 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 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

17 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

18 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

19 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

20 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

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