Dementia Strategy: Summary

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1 Dementia Strategy: Summary There are real opportunities for change and innovation across Essex to ensure that people have the best support available to live well with dementia. We want to make Essex more inclusive for everyone living with dementia and empower people to live the life they want in the community for as long as possible. Essex s dementia strategy is for everyone living with dementia or supporting someone who is and considers all the elements that contribute to supporting people and their families. Why take action on dementia? Dementia remains one of the most significant health and social care challenges facing the country. Our Joint Strategic Needs Assessment estimates that there will be a 44% growth in the number of people with dementia between 2013 and Despite this, Essex is currently failing to meet some of the key aspirations in the Prime Minister s Challenge on dementia. Over the past year we have talked extensively to people who live with dementia and worked to develop our understanding of people s current experience of dementia in Essex. These highlighted some challenging truths about the existing system: It is fragmented and bureaucratic. The battle to find what they need wears carers down and professionals find it difficult to navigate too. It doesn t consider people as part of a family or even in partnership with their carer. It isn t personalised it doesn t support people to maintain their capabilities, interests or relationships It relies heavily on the carer, but doesn t support them very well. They carry on until they can no longer cope, and then health or care services often need to intervene in the midst of a crisis. It doesn t help people and families to withstand the emotional pressures they face stress, relationship breakdown, loneliness It pushes people towards residential care because they can t find the support they need in the community These are stark revelations. But we believe there are real opportunities for change and innovation to ensure that people have the best support available to live well with dementia.

2 Vision Our vision for the future is one in which: People living with dementia are recognised as unique individuals who are actively shaping their lives and their care whilst being able to remain as physically and emotionally healthy as they can for as long as possible. Our strategy to achieve this is organised around nine priorities that reflect specific aspects of people s life with dementia. However there are five key elements to our approach that underpin the whole strategy: 1. A joint strategic approach to dementia in Essex The range of support for people with dementia is fragmented. We need to establish an integrated health and social care support system that can ensure people receive a timely diagnosis and intervene earlier to help people avoid crisis situations and unnecessary admission to hospital or residential care. We also need to promote solutions that build upon people s strengths and support networks to achieve the outcomes they want rather than impose service-based solutions. We are working closely with our partners to jointly design a simpler model that provides effective support before, during and post diagnosis all the way through to End of Life, whilst making the most efficient use of health and social care resources. A single dementia pathway, linked to a single assessment and care planning process centred around primary care, will join up services but remain flexible to organisational variations in different areas of the county. Primary care services will be actively engaged in helping people to access timely diagnosis and engage in post diagnostic support. 2. A new model of specialist support People with more complex needs or challenging behaviours cannot always find specialist advice or support when they need it. The lack of specialist advice can also lead to hospital or residential care admission when this might be avoided. Expertise on dementia tends to be concentrated in services for older people, which is not always appropriate for younger people with dementia or people with learning disability. We are developing an all-age dementia service for those with the most complex needs that will provide specialist advice and support across the social care system in Essex. 3. Support that is personalised and empowers people within the community Much of the support that is offered to people with dementia and their carers does not reflect the personality or preference of the individual and acts to separate people from their community rather than include them.

3 We think that support should build upon people s strengths and resources and connect them to things that help them get on with their lives. It also needs to promote early intervention and prevent problems from developing. Formal care and support services are only part of a wider network of help and resources in the community. We need to change the culture of assessment, support planning and care to tailor support to individual needs and preferences and help them carry on living independently in the community for as long as possible. All people with dementia should be offered a personal budget to give them maximum control over the kind of help they receive. We want carers to feel supported in their own right and to be respected as partners in care by services. We also want to empower people to plan in advance and make contingency plans to anticipate problems and prevent crisis. 4. Maximise the use of technology There are a growing number of ways that technology can be used to support people to remain independent, give carers more freedom and peace of mind and reduce dependence on formal services. We need to increase awareness of technology as an enabler for people to live independently. We are working with partners to find and promote new tools that address some of the obstacles to independence faced by people with dementia and their carers. 5. A stronger community response to dementia across Essex People affected by dementia in Essex are not always able to lead the lives they want. We think that a community-wide response is needed to address this problem. We have established a Pan Essex Dementia Action Alliance to raise the profile of dementia across the county and bring partners together in a shared commitment to improve the lives of people living with dementia. It will encourage the growth of a network of local alliances to take practical actions to empower people to live well with dementia in their community and be able to access a wider dementia friendly network across the county. If communities are more inclusive and supportive, the risk of social isolation or crisis for people living with dementia will be reduced.

4 Priorities We worked with our partners to identify nine priorities that reflect key aspects of people s lives with dementia: Our Aims: Prevention We will support people to live well and independently for longer We will enable people with dementia to keep themselves as healthy and well as possible and support carers to manage their own physical and emotional health Communities will be more aware of how people can live well with dementia within the community Finding information and advice Information will be available that is reliable, relevant and locally specific when it is needed There will be a range of technology solutions that make it easier for people to find and access information and support when they need it People will have a single point of access for support in an integrated system built around the GP Diagnosis and support Primary care services will be actively engaged in helping people to access timely diagnosis and engage in post diagnostic support There will be improved diagnostic support to BAME communities and people with learning disability There will be an effective system of diagnostic and post diagnostic support integrated around primary care

5 Living well with dementia in the community Support will be tailored to the individual and enable them to live well in the community for as long as possible People with dementia will be included and supported within their community Communities will adapt to be more inclusive of people with dementia Supporting carers Carers feel supported in their caring role and able to maintain their own health and wellbeing and, as far as possible, continue living the life they led before their loved one s dementia diagnosis Carers are able to have appropriate breaks from caring Carers are treated as partners in care and are listened to and respected by services Reducing the risk of crisis Living well in long term care Increase support, knowledge and awareness of how to manage behavioural, psychological and other symptoms that can lead to crisis across the workforce Rapid and effective support during crisis that is available when carers need it Promote contingency planning to reduce the impact of crisis and ensure less people are admitted to hospital or residential care as a result of crisis Care homes in Essex being more integrated with their community and care home residents enabled to maintain relationships and interests both within the home and the outside community All Care Homes should be inclusive environments and promote an enabling culture within their community A care home workforce that understand the needs of people with dementia and provide excellent personalised care End of life People with dementia are encouraged to plan ahead at an early stage to ensure they influence and shape their experience at end of life People with dementia receive compassionate, person-centred care at the end of life in the place of their choice Carers and families receive compassionate support both before and after their bereavement A knowledgeable and skilled workforce Establish a clear and consistent framework of dementia training across Essex so that all staff have a basic awareness of dementia and the appropriate knowledge and skills to support people and their families All providers of services to people with dementia and their carers to have a workforce with the appropriate level of awareness, knowledge and skills to support people with dementia in line with best practice

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