Southend, Essex and Thurrock and Essex Southend,
NHS Basildon and Brentwood CCG NHS Castle Point and Rochford CCG NHS Mid Essex CCG NHS North-East Essex CCG NHS Southend CCG NHS Thurrock CCG ’ ia NHS West Essex CCG ment Dementia Strategy 2017–2021 Strategy Dementia ut de ...abo
Southend, Essex and Thurrock Dementia Strategy 2017-2021
Tab l e o f contents
Living well with dementia 3 Rethinking dementia 4 Vision 5 Dementia... a shared strategy 6 Priorities 10
The stages of dementia 15 Ethnicity 15 Early onset dementia 16 Dementia and learning disability 16 Carers 16
Our priorities for action 2017–2021 19 1. Prevention 19 2. Finding information and advice 21 3. Diagnosis and assessment 22 4. Living well with dementia in the community 24 5. Supporting carers 26 6. Reducing the risk of crisis 28 7. Living well in long term care 30 8. End of life 32 9. A knowledgeable and skilled workforce 33
Key documents 35
Glossary and appendix 36
4 Living well with dementia in Southend, Essex and Thurrock Southend, Essex and Thurrock Dementia Strategy 2017–2021 1
Living well wi th dem en tia ...in Southend, Essex and Thurrock
This strategy is for everybody in Southend, These engagement activities highlighted Essex and Thurrock, (Greater Essex), who is some challenging truths about existing living with dementia or supporting someone systems, which involve all of the partners who is. It describes what we want support for above who commission dementia services people with dementia to look like in the future in their specific geographical areas: and identifies 9 priorities for action to make this happen. • Systems are fragmented and bureaucratic. The “battle” to find what they need wears The strategy has been developed in carers down and professionals find it partnership between Essex County Council, difficult to navigate too Southend on sea Borough Council, Thurrock • Services do not consider people as part District Council, and Clinical Commissioning of a family – or even in partnership with Groups across Greater Essex. It sits alongside their carer Greater Essex’s Mental Health and Wellbeing • Support is not personalised – and doesn’t strategy, to form a new and comprehensive, enable people to maintain their capabilities, all—age ambition for mental health and interests or relationships emotional well-being in our county. • Systems rely heavily on the carer, but don’t support them very well. Carers carry on There are real opportunities for change and until they can no longer cope, and then innovation across Greater Essex to ensure health or care services often need to that people have the best support available intervene in the midst of a crisis to live well with dementia. We want to make • Carers are often unable to access services Greater Essex more inclusive for everyone when they are available and have few living with dementia and empower people to options available over night and live the life they want in the community for at weekends as long as possible. • Current avenues of support don’t help people and families to withstand the Over the past year Essex County Council has emotional pressures they face – stress, worked with partners to talk extensively to relationship breakdown, loneliness people who live with dementia and worked to • Existing systems push people towards develop the understanding of people’s current residential care because they can’t find experience of dementia in Greater Essex. The the support they need in the community. Public Office also produced a report following a range of engagement activity in Greater These are stark revelations, but ones that Essex and this insight was used to inform emphasise the need and opportunity for this strategy. change and innovation to ensure that people have the best support available to live well Southend Borough Council also conducted with dementia. a wide range of public and stakeholder consultation activities. The key themes identified reflected similar challenges and needs to those across Essex, with some local differences.
2 Living well with dementia in Southend, Essex and Thurrock Southend, Essex and Thurrock Dementia Strategy 2017–2021 3 Rethinking Vision dem en tia ...a collaborative enquiry
Together we built a ‘case for change’:
Current experience of services is poor: quality, Demand is increasing, money is being wasted, inconsistency. Services are fragmented and and we can’t afford to keep doing things the access is difficult. way we currently are. Our vision for the
There is stigma and a lack of awareness Existing arrangements do not support whole understanding of dementia in communities, families or the needs of carers. future is one in which: which can be a barrier to diagnosis.
Individual needs are not currently sufficiently The world has changed (technology, expectations understood or met. and nature of families) but services haven’t. People living with dementia
Professionals’ values, knowledge and skills Lack of timeliness is a major issue: diagnosis, do not always support good outcomes for people availability of quality information & support, are recognised as unique with dementia and their families. planning for the future. individuals who are actively
Critical conclusions we draw included: shaping their lives and their • We need family-led solutions • We don’t know how good current provision is, • Carers lack support and respect: we should or not the impact it’s having be celebrating their role • No one organisations is taking responsibility • Current services are women-centric: more for monitoring and coordinating current care whilst being able to balance required provision • Residential care is the default solution, • We are spending huge resources responding but is outdated to crisis rather than preventing them. • This needs to be about supporting active remain as physically and citizenship for people with dementia • There are BIG implications for the way • We have to move away from a professional- we commission: it needs to change driven approach, and think about new roles • This will require culture change that we em o t i o n al l y h eal t h y f o r and networked solutions need to own • There is challenge and complexity in providing • Significant number of staff lack basic training information that is, timely relevant and • It’s not just about training and skills: it’s meaningful to individuals. values. Staff need to tackle attitudes towards as long as possible. older people more generally • Where is the positive risk-taking? • What is ‘good enough’ evidence? We need • There are waiting lists for current services to understand what we don’t know and feel • We are not commissioning for flexibility or confident to take considered risks on the new. personalised approaches
4 Living well with dementia in Southend, Essex and Thurrock Southend, Essex and Thurrock Dementia Strategy 2017–2021 5 Phase 1 (1–2 years) Phase 2 (2–4 years) Phase 3 (5+ years)
Dementia Dem en tia ASC Health ASC Health Wellbeing ...a shared strategy Model
Five Year Forward View
Our strategy to achieve this is organised around nine priorities that reflect specific aspects of A joint strategic approach to people’s life with dementia. However there are five key elements to our approach that underpin dementia in Greater Essex the whole strategy: The range of support for people with dementia We want our systems to help families develop Features of the new system is fragmented; people often get lost trying support networks to manage, or avoid times We will... to navigate an intricate web of information of crisis, explore independent living situations and services. We know people living with and not have to turn to hospital or long term Listen to citizens’ voices and focus on their Take a holistic approach: work with whole dementia face a spectrum of challenges and care settings to manage. Collectively, our strengths & abilities: take time to understand families to build a picture of what support is have a range of needs; so to achieve our vision systems need to be structured to promote individual desires & needs, as well as their needed, support independent living as much as it is vital that organisations work together solutions that build upon people’s strengths capabilities and respond appropriately as possible/appropriate and do all we can to meet to collectively transform the approach to and support networks to achieve the these change over time. the needs of family carers. dementia in Greater Essex. outcomes they want, rather than impose service-based solutions. Work together across the whole system: Focus on timely intervention: ensure early align resources to best help citizens & families diagnosis, support future planning (including Our vision aspires to create systems where and ‘do what needs to be done when it needs. for end of life) and offer flexible, responsive help organisations work towards the same goal; A single dementia pathway that joins when and where it’s needed. All localities are addressing challenges in up health and social care services is the both health and social care, and developing aspiration of this strategy; as we recognise Build citizens’ and communities’ Be clear and consistent about outcomes: Sustainability and Transformation Plans the benefits this will bring to people living understanding of dementia: reduce stigma and be ambitious about what should count as ‘success’, setting the future direction for health and with dementia and the wider health and increase opportunities and capacity for people looking to help people live rich, meaningful, mental health services (including as part social care system. In an agreed locality, we to support one other. independent lives for as long as possible of the NHS Success Regime in Mid and South aspire to having a single assessment, a single Essex). Supporting people living safely care plan and clear route to information and with dementia to remain as physically and support that works around a person, their We will know our system is good if it delivers these outcomes: emotionally healthy for as long as possible family and wider network is key to this. Citizens with dementia Communities We recognise the vital role Primary Care • Can access help and advice when and where • Understand the signs of dementia and how to they need it reduce the risk of developing it by living active We aim to design systems that reflect play and strive to work with their skills, • Remain as physical and emotionally healthy and healthy lives the unique local and demographic needs knowledge and expertise to develop a model as possible for as long as possible • Demand and build a way of life that responds of communities across Greater Essex but that enables closer working between General • Are actively shaping their lives and their care positively to the needs of those living with are able to: Practitioners and the wider dementia care • Are supported by their families, their dementia system. We recognise these aspirations communities and professionals to live active • Are involved in supporting those living and enriching lives as long as possible. with dementia • Support people to receive a timely diagnosis are transformational changes and plan to • Know where to go for advice or help. • Intervene earlier to inform and support approach these changes in phases, to achieve people to adapt to a life with dementia the aspiration of fully integrated models of Family carers Practitioners • Develop communities that are inclusive dementia care within 5 years, across Greater • Feel supported and informed in their role • Have a shared vision and understanding to people living with dementia. Essex. Equally we recognise these changes • Can access help and advice when and where of outcomes and success should not happen in isolation to the wider they need it • Seek to provide integrated care which health and social care system, and should • Are able to plan ahead with confidence supports independence, reducing hand-offs and align with the local priorities set out in • Remain physically and emotionally increasing simplicity for citizens healthy themselves. • Are skilled, knowledgeable and are co-creating Sustainable Transformation Plans as and co-delivering approaches that work part of the Five Year Forward View. • Are confident about diagnosing dementia and build trusted relationships with citizens.
ThePublicOffice Dementia in Essex
6 Living well with dementia in Southend, Essex and Thurrock Southend, Essex and Thurrock Dementia Strategy 2017–2021 7 Dementia Friendly Communities Cross County Pan Essex Dementia Workstreams Action Alliance
People living with dementia
Strategic Commissioning Dementia Action Alliances Function & Local Implementation
Future Partnership Model
A new model of specialist support The voice of lived experience
People with more complex needs or to ensure people have access to timely There are examples of dementia friendly We know to really meet the needs of people challenging behaviours cannot always find intervention that enables it to happen. support within Health, with a local GP living with dementia, it’s vital we listen to specialist advice or support when they need We need to change the culture of assessment, Surgery working towards becoming a the voice of those living with the condition, it. The lack of specialist advice can also lead support planning and care, through the “Good dementia friendly practice and a dedicated not only to better understand the challenges to hospital or residential care admission when Lives” approach (or Live Well, the approach team of professionals within Southend they face but identify solutions to overcoming this might be avoided. Expertise on dementia used In Thurrock) to ensure that the person, Hospital creating dementia friendly wards these challenges. We want to facilitate tends to be concentrated in services for older and their family, are kept at the heart of what through changing policies and cultures. activity in the community that responds to people, which is not always appropriate for we do and enable them to live independently Building on this work we feel confident that need, and recognise the only way of doing younger people with dementia or people in the community for as long as possible. All Southend will be a place where people affected so is to speak to those that are living with with learning disability. people with dementia should be offered a by dementia can live their lives with access dementia day in, day out. We will involve personal budget, where applicable under the to the services and support they need to fully those living with dementia in helping us An integrated all-age dementia service for Care Act to give them maximum control over participate in community life. achieve the aspirations set out in this those with the most complex needs that will the kind of help they receive. strategy and continue to re-visit our vision provide specialist advice and support across We want Carers to feel supported in their own to ensure the voice of lived experience not the Health and social care system in Essex, We have established a Pan-Essex Dementia right and to be respected as partners in care. only remains central to the transformation and possibly Southend , will support those Action Alliance to shape and influence a We will work with Carers to develop a network within the system, but helps to measure the that can sometimes be overlooked by the county wide response to dementia in Greater that enables their loved one but ensures they impact of the new system. To underpin this current system of support. Essex; and worked with District Councils to remain connected to information and support strategy a sustainable way of engaging with form local alliances that can drive change should they need it. people, in a relevant and meaningful way, will Support that is personalised in local towns, villages and Greater Essex be developed. This, along with the community and empowers people within Communities. We will continue to grow these Maximise the use of technology response, will be supported through the an inclusive community alliances and aspire to engage a breadth ongoing delivery of local Dementia Action of organisations across the private, public, There are a growing number of ways that Alliances and specific user groups to support People living with dementia want community, third, health and social care technology can be used to support people engagement and to change the messaging information and support that enables them sectors to commit to ways they will transform to remain independent, give Carers more around dementia in Greater to adapt, but keep living the life they led the lives of people living with dementia. freedom and peace of mind and reduce Essex Communities. prior to their diagnosis. They often feel dependence on formal services all of which isolated from the wider community and In Southend people living with dementia are outlined in the Dementia Technology. We To achieve our vision; and drive forward many feel scared to go out of their home. and their carers along with 44 businesses, will work with people to raise their awareness the actions set out in this strategy we We think that a community-wide response services and community groups are working of technology as an enabler to independent recognise the need to bring together the five is needed to address this problem. in partnership with Southend Borough living and we will create environments that key elements listed above, to form a whole Council to maintain the ‘Working towards enable the use of technology. We are working systems partnership function. A function Support should build upon a person’s becoming Dementia Friendly’ status awarded with partners to find and promote new that is responsible for mobilising activity, strengths, their skills, their qualities and in March 2016. Southend is very fortunate tools that address some of the obstacles to and implementing change but one that is their own resources. We want to empower to have a variety of members within the independence faced by people with dementia accountable to the wider health and social people to embrace outdoor space, be Southend Dementia Action Alliance (SDAA), and their Carers and will align with wider care infrastructure that it works within. physically active and take positive risks including the UK’s first dementia friendly programmes of work taking place across that enable them to live they life they want airport, a committed community support Essex focused on developing digital response to lead. We recognise early intervention is approach from Essex Police Southend and to health and social care needs. a key part in achieving this; and strive Essex Fire & Rescue Southend.
8 Living well with dementia in Southend, Essex and Thurrock Southend, Essex and Thurrock Dementia Strategy 2017–2021 9 Priorities
We have worked with our partners and needs of individuals and supports the wider Priority Outcome Success Measures through the Public Office engagement, family network, with the offer of a personal to identify nine priorities that reflect budget to give them maximum control over Diagnosis All people with dementia • GP’s across Greater Essex understand the key aspects of the lives of people living their care and support. and support will receive appropriate importance of a timely diagnosis and are with dementia: and timely diagnosis and aspiring to work with the wider system to • Prevention integrated support. diagnose within an appropriate timeframe We want to intervene earlier to prevent needs • Finding Information & Advice • Professionals across the system are aware of from increasing and help people to continue • Diagnosis & Support referral pathways and are able to work together to live independent lives, building on their • Living well with Dementia to best support the assessment and strengths and the resources in the Community diagnostic process • There is a clear referral pathway to diagnosis available to them within their personal • Supporting Carers with appropriate information and support offered network and the wider community. • Reducing the Risk of Crisis • BAME Greater Essex Communities are accessing • Living well In Long Term Care assessment and diagnostic services For those who need ongoing support, • End of Life • There is appropriate screening for people who we want to make sure this responds to the • A Knowledgeable and Skilled Workforce are considered to be at high risk of dementia • People with dementia have access to post diagnostic support that is relevant and personalised Priority Outcome Success Measures • People living with dementia and their entire network are supported to draw on their strengths Prevention People in Greater Essex • Using the Making Every Contract Count and assets to adapt to living a life with dementia, will have good health and approach, people understand the link between and plan for the future wellbeing, enabling them healthy and active lifestyles and are able to • People are offered a direct payment upon to live full and independent make positive changes in their lives diagnosis of dementia where appropriate. lives for longer. • People have an increased awareness of Mild Cognitive Impairment Living well All people with • There is a whole community response • People are aware of how to access information with dementia Dementia are supported to living well with dementia and support should they be concerned in the community by their Greater Essex • Environments and physical settings in about dementia communities to remain the community are dementia friendly • Increased percentage of people diagnosed with • People living with dementia are able to independent for as long dementia receive an annual face to face review take advantage of open space and nature as possible. of their health needs, including medication, • The voice of lived experience helps to shape how and whose vital health indicators are checked Greater Essex Communities respond to dementia • People in BAME Greater Essex Communities • People living with dementia are encouraged have increased awareness of dementia and to access information and support that helps the warning signs themselves to live well and independently • Carers have access to annual health check • The lives of people living with dementia in and have access to Improved Access to the community are transformed through Psychological Therapies. the DAA activity • Young people are part of the community Finding Everyone with dementia • A comprehensive whole system Information support for people living with dementia information will have access to the right and guidance offer is available. • The market is able to respond to people living and advice information at the right time. • People living with dementia will feel supported with dementia and support them to live well to navigate the system and access information • People with dementia have awareness of and support that is relevant to them. alternative accommodation options.
10 Living well with dementia in Southend, Essex and Thurrock Southend, Essex and Thurrock Dementia Strategy 2017–2021 11 Priority Outcome Success Measures Priority Outcome Success Measures
Supporting Carers are supported • Carers are a driving force behind shaping the End of life People with dementia • People living with dementia, their families and carers to enable people with response to dementia in Greater Essex and their families plan carers complete advanced care plans that are dementia to remain • Carers of people living dementia are offered ahead, receive good end recorded and held by the GP as independent as information and support relevant to their needs, of life care and are able • People assessed as not having capacity, with no possible. throughout their experience with dementia to die in accordance family or friends are referred to an Independent • Carers are encouraged to build on their own support with their wishes. Mental Capacity Advocate as appropriate networks to live well and keep physically and • People are not delayed in being discharged emotionally healthy from hospital • Carers feel informed and equipped to care for • People are informed of options about end of life someone living with dementia and able to plan, and are given the appropriate support, respect or flex to increased needs or challenges and dignity to die in the place they choose • Carers are able to access a range of opportunities • Carers and families receive bereavement support to take a break from their role as a Carer. at a time that is right for the individual or family.
Reducing the All people with • All hospitals to aspire to being dementia A All people with dementia • There is a framework for dementia training risk of crisis dementia receive friendly care settings knowledgeable receive support from across Greater Essex to ensure all people receive support to reduce • People living with dementia, with complex needs and skilled knowledgeable and training relevant to their role the risk and such as co-morbidities are offered specialist workforce skilled professionals • To develop a workforce across the dementia care manage crisis. information and support where needed. system that has the right skills, behaviours and • Crisis situations are avoided or managed values to support people living with dementia, appropriately – Crisis situations are planned for and is equipped to do so and responded to effectively • To improve the quality of dementia care across • Emergency planning, including clinical emergency the market, and support people to understand the planning is addressed as part of all carer’s assessments benefit of positive risk taking to enabling a person • The Community and Primary Care are able to respond to live well. to episodes of crisis in care homes appropriately
Living well in All people with • All care homes for people with dementia in Greater long term care dementia live Essex will be supported to be dementia friendly well when in long by 2020 term care. • People living with dementia, their families and carers understand what high quality care looks like and where to find it • People with learning disabilities who have dementia, (or at risk of), are fully supported in long term care settings through linking Dementia in to LD health checks • People with dementia in long term care are encouraged to build and maintain networks both in and out of the care setting • People assessed as not having capacity, with no family or friends are referred to an Independent Mental Capacity Advocate as appropriate.
12 Living well with dementia in Southend, Essex and Thurrock Southend, Essex and Thurrock Dementia Strategy 2017–2021 13 Th e s t ag es o f dem en tia
“Dementia” is a term that covers a range will also have other medical conditions of symptoms that result from damage to or disabilities, such as arthritis, hearing the brain that can affect memory, attention, problems, heart disease or mobility problems. communication, problem-solving and The Alzheimer’s Society found that 72% of behaviour. Every individual’s “dementia respondents to their Dementia 2014 survey journey” is very different. Some people may were living with another medical condition live for years without any obvious decline, or disability – some were living with up to while others experience rapid deterioration. twelve conditions. However there are similarities in the challenges and pressures people experience As the disease progresses, people gradually as symptoms develop. find normal activities challenging and may fear losing control as they become In the early stage, people may dismiss increasingly dependent on others. People forgetfulness or difficulty concentrating may become depressed and anxious when as normal signs of ageing or attribute diagnosed as well as when they begin lose disorientation and mood swings to stress. their ability to do everyday things for Once symptoms begin to impact on normal themselves. In the late stage, people can life, diagnosis can be a relief but also lead to become totally dependent on others for fear and denial about the future. People may basic life tasks and this is often when they feel a sense of loss, a loss of their identity and consider moving into a care home. the person they believe they once were. Ethnicity People with dementia say that it is important to feel that their life still has meaning. Some Dementia among black, Asian and minority achieve this by maintaining relationships ethnic (BAME) Greater Essex Communities with important people in their lives or by is significantly under-diagnosed and research keeping up interests. Others struggle through by the Social Care Institute for Excellence lack of opportunity, lack of confidence or other has found that these groups are less likely to barriers. In the Alzheimer’s Society Dementia use dementia services. There are low levels 2014 survey, only 60% said that they left of awareness, late diagnosis and a lack of the house every day and 40% said that culturally sensitive services. All of which they felt lonely. makes it more difficult for people from these Greater Essex Communities to get the support Dementia is a progressive condition which they need. Greater Essex has a relatively means that the symptoms will become worse small BAME population (5.7% in Essex and over time. People’s ability to make decisions 13% in Southend) but the proportion of people about their lives or even day-to-day situations receiving services is even smaller (1.2%) will decline. To compound these problems, suggesting they are under-represented. a large proportion of people with dementia
14 Living well with dementia in Southend, Essex and Thurrock Southend, Essex and Thurrock Dementia Strategy 2017–2021 15 Types of health conditions that affect older (65+) cared-for
350 350 336
Stroke Parkinson’s 53 Diabetes 35 Dementia Chronic Obstructive Pulmonary Disease 300 Cancer Acquired Physical Injury 18 Early onset dementia Carers
Care for younger people (ie. under 65) with Over 21 million people in the UK know close 51 dementia is a challenge. Younger people friends or family affected by dementia and it with dementia face different issues, not least is estimated that one in three people will care that they are more likely still to be working for a person with dementia in their lifetime 250 or have a young family. Support designed (Prime Minister’s Challenge on Dementia). for older people with dementia is often not Approximately one third receive no support suitable for younger adults. This means that from either social services or the voluntary people with early onset dementia can find sector. In Southend, Thurrock and Essex an themselves isolated within the community. estimated 145,000 provide care and support Those with more challenging needs can find it for someone who needs help (not specific to difficult to find suitable long term care options Dementia) with their day to day life of which with the majority of solutions aimed either at about 32,000 are estimated to provide care 200 older people or people with learning disability. for more than 50 hours per week. We know The majority of people with dementia in that over half of people who have approached Greater Essex are over 70 but 7.5% are ECC for a social care assessment have an younger than this and there are a few are unpaid family carer and there will be even 217 under 30. In Southend 98% of people living more in the community who have not yet with dementia are over 65 and just 38 people sought support from us (ECC Dementia are registered under the age of 65. Specialist Topic Needs Assessment (2015)). 150 180 The support of family carers is often crucial Learning disability and dementia to enabling people with dementia to remain in their community. They are often the first 123 People with learning disabilities have a to spot changes in the person’s health or higher risk of developing dementia than other behaviour and can support communication people and usually develop the condition at and sharing of information. 25 a younger age. This is particularly true of people with Down’s syndrome, one in three However carers of people with dementia 100 of whom will develop dementia in their 50s. can face a particularly challenging range Symptoms of dementia can present differently of symptoms and behaviours that can 28 so that people often don’t recognise changes persist over several years. Research shows as being dementia related. Because of this, that carers of older people with dementia opportunities for early intervention are experience greater strain and distress than lost. In Greater Essex we have found that carers of other older people (Carers Trust: 20 mainstream diagnostic services are not The Triangle of Care: A guide to best practice 29 50 44 geared up to assess people with learning in dementia care). In addition, many carers disability, are not making reasonable are themselves older people with physical 31 adjustments and often refer people back frailty and health conditions of their own. 32 18 to learning disability services. Likewise, The graph on the next page has been taken 10 2 13 mainstream dementia services are not from data provided at assessment. 6 geared to support people with learning 2 6 5 17 13 disability or their carers. 7 0 6 18–64 65–74 75–84 85+
16 The stages of dementia Southend, Essex and Thurrock Dementia Strategy 2017–2021 17 Our priorities f o r ac t i o n 2015 2020
Priority 1: Prevention
The issue The risk of developing dementia increases the brain healthy and thus reduce the risk with age. Currently we estimate there are of developing dementia in later life. Other 19,000 people in Greater Essex with dementia lifestyle choices such as not smoking, keeping but predicted to rise to over 25,000 in the low cholesterol and blood sugar can also help. next ten years, (based on Office for National Statistics Population 2014 and is higher than The economic impact of dementia is the national average). The highest increase is enormous. The Alzheimer’s Society calculate predicted in those over 85, so likely to present the average annual cost per person with with more complex needs suggesting huge dementia as about £30,000 for those living implications for the Health and Social in the community versus c. £37,000 for those Care System. in residential care. For people living in the community, three quarters of the cost relates According to Alzheimer’s Society research to the indirect costs associated with the (Dementia UK Update 2014), as many as 70% contribution of unpaid family carers. For of people with dementia will also have other those people in residential care, £32,700 medical conditions or disabilities, such as relates to social care, this is £26.5bn a year, arthritis, hearing problems, heart disease enough to pay for every household’s energy or mobility problems. Many will have one bills in the UK. (Source Dementia 2015) or two conditions, some will have far more. Alzheimer’s Society. This emphasises the importance for people to receive advice and support that is tailored To maintain independence and quality of life to their needs. The ability to measure as long as possible, it is essential we prioritise awareness around cardio vascular risk the health and wellbeing of people with factors, and general health and wellbeing dementia and that of their carers and support will be key in supporting people to think them to self-manage any co-existing health in a preventative way. problems. Social isolation and loneliness can be a significant problem and can lead to The Blackfriars Consensus Statement (2014) anxiety and depression. However in Greater made clear that the risk of some types of Essex the percentage of those diagnosed dementia can be reduced but it cannot be with dementia receiving an annual review eliminated. There is growing evidence that from their GP or recording of vital health cardiovascular factors, physical fitness, and indicators is currently among the lowest diet have a major part to play in keeping in the country.
18 Living well with dementia in Southend, Essex and Thurrock Southend, Essex and Thurrock Dementia Strategy 2017–2021 19 Outcome Priority 2: Finding People in Greater Essex will have good health information and advice and wellbeing, enabling them to live full and independent lives for longer. We estimate there The issue There’s so much are 19,000 people Information and advice is fundamental to information, where am Success measures enabling people, carers and families to take • Using the Making Every Contract Count in Greater Essex control of their care and make well-informed I supposed to start?” approach, people understand the link decisions about the support they need. We Carer between healthy and active lifestyles and with dementia but need to help people find and connect to are able to make positive changes in predicted to rise to resources and support that will help them get their lives on with their life and develop technological • People have an increased awareness over 25,000 in the solutions that make it easier for them to do of Mild Cognitive Impairment this. However people tell us that they struggle • People are aware how to access information next ten years.” to navigate the large amount of information I have been given a lot and support should they be concerned available about dementia and identify the Based on Office for National about dementia right support in their area. This can be really of information, cannot Statistics Population 2014 • Increase percentage of people diagnosed distressing when people are at a vulnerable make head nor tail of with dementia receive an annual face to point, such as when they have just received face review of their health needs, including a diagnosis or when they have an immediate it and not sure what medication, and whose vital health need for help. The offer of information and indicators are checked advice needs to be personalised because it all means.” • People in BAME Greater Essex people will have different preferences for Carer Communities have increased awareness how they want to receive information. • Carers have access to annual health check and have access to Improved Access to GP’s and their surgeries can be key sources Psychological Therapies. of information but the quality and availability of information available is variable. From April 2015, everyone with dementia should It is difficult for carers have access to a named GP with overall to find out what help is responsibility for their care. out there and how to Outcome Everyone living dementia will have access access it.” to the right information at the right time. Counsellor
Success measures • A comprehensive whole system Information and guidance offer is available • People living with dementia will feel supported to navigate the system and access information and support that is relevant to them.
20 Our priorities for action 2015–2020 Southend, Essex and Thurrock Dementia Strategy 2017–2021 21 Priority 3: Diagnosis and assessment
The issue Outcome Getting a diagnosis took so long. It was Early diagnosis of dementia is vital because it All people with dementia will receive a huge relief when it finally came. I knew helps people to understand what is happening appropriate and timely diagnosis and to them, make plans and gain access to the integrated support. then I wasn’t imagining it. We could most appropriate support and treatment. Some professionals can be reluctant to refer Success measures start to make plans.” people for diagnosis because of a perceived • GP’s across Greater Essex understand the Carer lack of post-diagnostic support, amongst importance of a timely diagnosis and are other reasons. In Essex, 52% of the estimated aspiring to work with the wider system to dementia population have a diagnosis. In diagnose within an appropriate timeframe Southend the diagnosis rate at December • Professionals across the system are aware 2016 was 72.6%. The national target is 67%. of referral pathways and are able to work together to best support the assessment I was given this devastating news, given Some groups are at higher risk of not being and diagnostic process a folder of stuff and left to get on with it diagnosed. Greater Essex has a relatively low • There is a clear referral pathway to BAME population (5.7%) but the proportion diagnosis with appropriate information in the darkness.” of people of BAME origin receiving services and support offered generally, is even lower (1.2%), suggesting • BAME Greater Essex Communities Carer they are underrepresented. In Southend the are accessing assessment and BAME population in the 2011 census was 13%. diagnostic services • There is appropriate screening for people Early onset dementia can be harder to who are considered to be at high risk recognise and diagnose and people may still be of dementia At the point of diagnosis we need someone working and have young children. In Greater • People with dementia have access to Essex 7.5% of those with dementia are under post diagnostic support that is relevant who is there for the family. Not just bits of 70 and a few are under 30. Finally, people and personalised with learning disabilities are at significantly • People living with dementia and their paper and a crisis line. We need practical, higher risk of developing dementia and at a entire network are supported to draw real advice from someone who knows younger age. There are no specialist services on their strengths and assets to adapt for people with both LD and dementia in to living a life with dementia, and plan what we’re experiencing.” Greater Essex. for the future Carer • People are offered a direct payment upon Following diagnosis, people need diagnosis of dementia. personalised ongoing support and advice both to understand their condition; the support available (including for their carers) and the importance of planning in advance. They should have an assessment of their needs and a personalised care plan covering both health and social care.
22 Our priorities for action 2015–2020 Southend, Essex and Thurrock Dementia Strategy 2017–2021 23 Priority 4: Living well with dementia in the community
The issue Outcome Especially in the early stages, people with The traditional approach to assessing People living with dementia feel able to dementia tell us that they want to continue people’s needs can be too focused on assessing access and contribute to their community, to live their life as normally as possible. for services. In fact formal services are just undertaking day to day tasks that supports At first I didn’t think This means staying in their own home, part of a wider network of community support them to remain as independent for as long ‘activity centres’ were being included in their local community, which encompasses other public services, as possible. maintaining friendships and interests. As voluntary and commercial services, local really for people like people’s symptoms worsen they become more amenities and the informal help and support Success measures dependent on others for transport and general that Greater Essex residents give to • There is a whole community response him. Who else is a help to be able to do this. Fear about becoming each other. to living well with dementia grown up and goes to confused or getting lost also leads to people • Environments and physical settings going out less and restricting themselves to We want to promote a more inclusive in the community are dementia friendly an ‘activity centre’?” less demanding activities, which can lead approach to help people live independently • People living with dementia are able to Carer to them becoming more isolated from the in their community, maintaining the take advantage of open space and nature community. Loneliness is an increasing relationships and activities that matter to • The voice of lived experience helps to shape problem and can lead to depression or them. We will do this by helping people and how Greater Essex Communities respond anxiety – over half of those we support their families to use their existing strengths to dementia who have dementia are widowed and and resources and connect to things that • People living with dementia are about 4% live alone. will help them get on with their lives. Where encouraged to access information and People don’t know people need more intensive support we will support that helps themselves to live We know that there are gaps in the support make sure this is tailored to their individual well and independently what to say or do, available for people with dementia in Greater needs and preferences, with the option of • The lives of people living with dementia your world gets Essex. Greater Essex is above average in a personal budget to give them maximum in the community are transformed providing equipment or adaptations to control over the kind of help they receive. through the DAA activity very small all of help people stay in their own homes but • Young people are part of the community below average in its provision of home care. In a Dementia Friendly Community people support for people living with dementia a sudden.” Services are also not personalised. They are empowered to have aspirations and feel • The market is able to respond to people Carer often group people together without taking confident, knowing they can contribute and living with dementia and support them account of their individual capability or participate in activities that are meaningful to live well their personal preferences, experiences to them. But we know that there is still • People with dementia have awareness or personality. There is a limited range of stigma and misunderstanding in our Greater of alternative accommodation options. activity to choose from in some areas and few Essex Communities and that people are services at evenings or weekends. Transport not knowledgeable about dementia or how is a problem, particularly in more rural parts to help someone with the disease live well. of the county. There is little support to help Key services including blue light services, people maintain friendships or relationships supermarkets, banks, etc. do not always or make new ones. have staff able to recognise and support people with dementia.
24 Our priorities for action 2015–2020 Southend, Essex and Thurrock Dementia Strategy 2017–2021 25 Priority 5: Supporting carers
The issue Outcome The impact on the family of a person Carers find it difficult to take time for People caring for someone living with diagnosed with dementia is significant, themselves, whether to take a break or for dementia feel informed and able to support especially on family members who take on essential activities such as their own health their loved one, whilst able to maintain their I have to stop myself the responsibility of caring for the person. appointments, because it can be hard to find own health and wellbeing from thinking about Diagnosis can be a difficult time for the carer others they trust who are willing or able to as much as for the person with dementia. look after someone with dementia. Services Success Measures more than one day The condition can have a major impact on are not always the best answer. They are • Carers are a driving force behind shaping their relationship as the person becomes often at the wrong time or place and may the response to dementia in Greater Essex ahead because if you more dependent on their family for day to not offer things that people really want. But • Carers of people living dementia are offered try, it overwhelms you. day support. Carers tell us they need help to carers of people with dementia often end up information and support relevant to their understand the condition and how it is likely relying on a narrow range of day services needs, throughout their experience It destroys you.” to affect their family member and may need and dementia cafés for lack of alternative with dementia help to find support for them both. forms of support. • Carers are encouraged to build on their Carer own support networks to live well and keep People with dementia become increasingly When it comes to longer breaks, carers physically and emotionally healthy dependent on others and in the later stages evidently find it hard to find suitable options • Carers feel informed and equipped to care may develop behaviours and psychological and gain access to them. In addition there are for someone living with dementia and symptoms that make them among the limited options for people with more complex able to plan, or flex to increased needs The diagnosis was most challenging to care for. Many carers needs or who are more challenging to care for. or challenges gain personal satisfaction from caring and We need to work with people with dementia • Carers are able to access a range of a difficult experience. want to continue but caring comes at great and their carers to understand what they opportunities to take a break from their personal cost. 40% of carers experience need and examine the full range of options role as a Carer. I walked in a daughter psychological distress or depression with within their own network and the wider and walked out those caring for people with behavioural community that would allow them to take problems experiencing the highest levels a break, whether on their own or with the a carer.” of distress (Carers Trust: Triangle of Care: person they care for. Carer Best practice for dementia care). Yet their ability to continue caring may be essential It is also important that health and care to the person being able to remain in the professionals listen to the carer and work community. Carers tell us that they need with them to support the person with practical support and reassurance in dementia. As well as giving the carer peace caring and someone to turn to when of mind, working in partnership with the things get tough. carer can achieve better outcomes for the person with dementia and ensure services have a fuller picture of the person’s needs. Yet carers report feeling disconnected from the process and frustrated that they are not listened to.
26 Our priorities for action 2015–2020 Southend, Essex and Thurrock Dementia Strategy 2017–2021 27 Priority 6: Reducing the risk of crisis
The issue I was so exhausted by it all I almost gave Dementia is not a generic condition. People beds are thought to be occupied by someone in and said “do what you want” but I with dementia can develop a wide range of with dementia (Fix Dementia Care; Hospitals symptoms that are particularly challenging Report 2016 (Alzheimer’s society), and in managed to make it in the end.” for carers and put unprecedented demand Greater Essex we know that people living Carer on services. These can include aggression, with dementia stay in hospital 50% longer agitation, delusions, wandering, night time than those without. Care Managers say that waking, hoarding, loss of inhibition and it can take days or even weeks for mental shouting. Behavioural and Psychological health services to respond to a referral. Symptoms of Dementia (BPSD) can lead Social workers told us that mental health to crisis and care breakdown resulting in teams are focused on preventing escalation She called us because she wanted someone admission to acute services or residential to residential and acute services but that care. Some people with dementia also have we need to identify and support people earlier to talk to. As her condition was progressing other conditions, such as learning disability and look at the role of community psychiatric she felt scared. She had gone into her local or long term health problems, that can make support to keep people out of hospital. their condition even more complex. town shopping as she always had but had Outcome Other crises can occur as a result of the All people with dementia receive support got lost and was found walking round carer themselves becoming injured, ill to reduce the risk and manage crisis the roundabout.” or unable to continue caring, leaving the person with dementia unsupported. Carers Success Measures Carer can be at increased risk of becoming ill as • All hospitals to aspire to being dementia a result of caring. Studies have shown that friendly care settings providing carers with breaks from caring, • People living with dementia, with complex emotional support and access to training needs such as co-morbidities are offered can significantly delay the need for the specialist information and support People don’t contact us until they’re in person receiving care to go into residential • Crisis situations are avoided or managed care. It may also prevent emergency appropriately – Crisis situations are crisis. And when they do contact us, there hospital admission. planned for and responded to effectively • Emergency planning, including clinical are often two people in crisis, the individual Finally, people with dementia can experience emergency planning is addressed as part with dementia and their carer. We wait for other physical or mental health problems of all carer’s assessments which, if not identified and addressed, can • Primary Care are able to respond to episodes people to come to us and by then the dementia lead to admission to acute hospital or mental of crisis in care homes appropriately. health services. Nationally, 25% of hospital has progressed quite far, we have to be more proactive.”
Paid carer
28 Our priorities for action 2015–2020 Southend, Essex and Thurrock Dementia Strategy 2017–2021 29 Priority 7: Living well in long term care
The issue Outcome I can’t trust that they’re going to follow In 2014 the Care Quality Commission found All people with dementia live well when his care plan. I can’t switch off.” that whilst many hospitals and care homes in long term care and able to access their deliver excellent care, the quality of care for community as appropriate Carer people with dementia varied greatly. A key issue was that some hospitals and care homes Success Measures did not comprehensively identify all of a • All care homes for people with dementia person’s care needs and there was variable in Greater Essex to be dementia friendly or poor staff understanding and knowledge by 2020 I had to place someone four times due to of dementia care. • People living with dementia, their families and carers understand what high quality his dementia. His behaviour wasn’t difficult The government wants to avoid people care looks like and where to find it – he just needed personalised support. His with dementia requiring long term care by • People with learning disabilities who improving the provision of local community have dementia, (or at risk of), are fully behaviour deteriorated due to the transfers services, education and training. The supported in long term care settings majority (85%) of people with dementia say through linking Dementia in to LD but this should have been anticipated.” that they would prefer to remain in their own health checks Carer home. In Greater Essex over 80% of people • People with dementia in long term care are with dementia live in the community but the encouraged to build and maintain networks proportion of people with dementia supported both in and out of the care setting in residential care is still higher in this • People assessed as not having capacity, county than in similar local authorities. with no family or friends are referred to Care homes need to be enabled to provide an Independent Mental Capacity Advocate There are currently 252 care homes and as appropriate. outings, passionate about taking people 81 nursing homes for people with dementia across the county. There is a lack of data outside, but I accept care homes are not about the quality of residential care in the staffed to provide regular outings for people market and carers and families tell us that they struggle to find appropriate care for in their care. We need to find another way the person they care for. to ensure people have a life.”
The government wants all hospitals and care Carer homes to meet agreed criteria to become dementia friendly by 2020.
30 Our priorities for action 2015–2020 Southend, Essex and Thurrock Dementia Strategy 2017–2021 31 Priority 8: End of life Priority 9: A knowledgeable and skilled workforce The issue It is important to have early conversations People’s wishes The issue People think you with people with dementia about advance are not known. If health and care professionals and all other can’t communicate planning and end of life care so that people care workers understand the complexity can plan ahead and ensure that their wishes We need to get of dementia; its impact upon the person with people with are known and acted upon. The government and their family and know how to provide has said that all people with a diagnosis of this information effective help and support, this will improve dementia; there is dementia should be given the opportunity for earlier.” the quality of information, advice and care a general lack of advance care planning early on to ensure the that people receive in all areas. Poor quality person and their carer are fully involved in Social worker care has a major, negative impact on the awareness.” decisions on care at end of life. quality of life of the person with dementia Support worker and causes stress and anxiety for their carer. The aim should be to maximise the person’s It can also lead to higher care costs when quality of life and support carers. All people health and social care professionals do not with dementia and their carers should receive know how to support people to maintain coordinated, compassionate and person- People don’t plan. their independence and quality of life in centred care towards the end of their life. This We need to help the community. includes palliative care for the person with The biggest impact dementia and bereavement support for carers. people plan for the Across health and social care there is a lack that could happen of consistency or a clear pathway around Outcome inevitable whilst dementia training. Training is provided at to assist those living People with dementia and their families plan they’ve still got different levels and there is no clear picture ahead, receive good end of life care and are of what the training is meant to deliver. with dementia is able to die in accordance with their wishes the capability.” education. To educate Outcome Success Measures Social worker All people with dementia receive support people and eradicate • People living with dementia, their families from knowledgeable and skilled professionals and carers complete advanced care plans where needed the stigma.” that are recorded and held by the GP Care home manager • People assessed as not having capacity, Success Measures with no family or friends are referred to • There is a framework for dementia training an Independent Mental Capacity Advocate across Greater Essex to ensure all people as appropriate receive training relevant to their role • People are not delayed in being discharged • To develop a workforce across the dementia from hospital care system that has the right skills, • People are informed of options about behaviours and values to support people end of life and are given the appropriate living with dementia, and is equipped to do so support, respect and dignity to die • To improve the quality of dementia care in the place they choose across the market, and support people • Carers and families receive bereavement to understand the benefit of positive risk support at a time that is right for the taking to enabling a person to live well. individual or family.
32 Our priorities for action 2015–2020 Southend, Essex and Thurrock Dementia Strategy 2017–2021 33 Key documents
Alzheimer’s Society (2010). My name National Institute for Health and Care is not dementia Excellence (2006, modified March 2015). Clinical Guideline 42: Dementia: supporting Alzheimer’s Society (2013). Building people with dementia and their carers in dementia-friendly Greater Essex health and social care
Greater Essex Communities: a priority National Institute for Health and Care for everyone Excellence (April 2013). Quality Standard 30: Supporting people to live well with dementia Alzheimer’s Society (2014). Dementia 2014: Opportunity for Change The Princess Royal Trust for Carers and the Royal College of General Practitioners (2011). Carers Trust & Royal College of Nursing Supporting carers: an action guide for general (2013). The Triangle of Care: Carers Included: practitioners and their teams a Guide to Best Practice for Dementia Care Public Health England and UK Health Forum Department of Health (February 2015): (2014). Blackfriars Consensus on promoting Prime Minister’s Challenge on dementia 2020 brain health: reducing risks for dementia in the population. Greater Essex County Council (April 2015). Carers count in Greater Essex: Greater Essex Royal College of General Practitioners (2013). Carers Strategy 2015-2020 Commissioning for Carers
Greater Essex County Council (June 2015). Southend on sea borough Council (Jan 2016) Dementia specialist topic needs assessment. Themes From the Consultation Workshops
Greater Essex County Council (June 2015): Southend on sea Borough Council Literature review of interventions to support (December 2016) Dementia JSNA (draft) the dementia needs assessment Technology Charter https://www.alzheimers. ESRO and ThePublicOffice2015 ( ). Living well org.uk/technologycharter with dementia in Greater Essex: ethnographic research findings
Joint Commissioning Panel for Mental Health (2013). Guidance for commissioners of dementia services
34 Key documents 35
G l o s s ar y and appendix
Glossary Appendix – Implementation Plan
ASC Adult Social Care The following activity will help us BAME Black and minority delivery our aspirations and vision set out ethnic groups in the strategy but will required addition BPSB Behavioural and psychological investment to deliver. It is expected that an symptoms of dementia Outline Business Case (OBC) will be developed DAA Dementia Action Alliance to request the level of investment needed GP General Practitioner to improve the lives of people living with LD Learning Disability dementia, the families and carers. Again, you MCI Mild Cognitive Impairment can see from the table how the activity links Good Lives ECC approach to Social Care in to the priorities and outcomes outlined in the strategy as well as how we propose we will measure whether or not we are successful. At this time the level of investment/cost is not given as a financial figure as this will be part of the OBC.
36 Glossary and appendix 37