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Dementia StrategyCheshire West & Chester

2017-2020

02 Cheshire West and Chester Dementia Strategy

ContentsForeword 3

Introduction and background 4

Where are we now? 5

Our vision 6

Our principles 6

Our approach 7

Prevention 8

Diagnosing well 9

Living well 10

Supporting well 10

Planning well 12

Performance framework for the strategy 13

Conclusion 14

Membership 14

Cheshire West and Chester Dementia Strategy 03

We are delighted to present Cheshire West and Chester’s Dementia Strategy,which covers the years 2017-2020. In it, we recognise the significance of ahealthy lifestyle in preventing, delaying onset and living with dementia, as wellas the importance of supporting carers, keeping them healthy in body and mind.

Foreword

How well a person lives with dementia isreflective of the environment in which they live,work and socialise. Cheshire West and Chester’sresponse to dementia is firmly rooted in anddeveloped from the communities within theborough. We are committed to, and understandthe importance of, having a programme ofengagement that is ongoing. We will to listen tothe views of local people, particularly those livingwith and affected by dementia in order to developand shape our action plans. Our long term vision isto create ‘Dementia Inclusive Communities’. To dothis requires a change in attitudes and behaviours

towards dementia at all levels of society whichreflect the challenges of an ageing population,people living longer and the impact of dementia.

Key stakeholders make up the membership of theDementia Strategy Working Group. Our aim is forCheshire West and Chester to be a place whereeveryone can lead a healthy and fulfilling life,including people with dementia and their carers.We want our residents to know that their boroughis a place where people with dementia and thosewho care for them, are treated with dignity andrespect, and get the help and support they need.

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Councillor Samantha DixonLeader of the Council, Chair ofthe Health and Wellbeing Board

Dr Chris RitchiesonChair of NHS West Cheshire CCG, DeputyChair of the Health and Wellbeing Board

CHESHIRE WEST AND CHESTER

This strategy sets out the strategic framework forreducing the risk of dementia (or delaying its onset)and enabling people living with dementia and theircarers to live well, in Cheshire West and Chester.We are clear about the responsibility that ourorganisations have to help shape and deliver abetter model of health and social care for ourresidents who have, or may develop dementia andtheir carers, by building a collective response to thechallenges.

Dementia is an umbrella term that describes thesymptoms that occur when the brain is affected bycertain diseases or conditions. These may be causedby a number of illnesses in which there isprogressive deterioration, including a decline inmemory, reasoning, communication skills and theability to carry out daily activities.

Dementia is not just a disease of older age. Peopleunder the age of 65 with dementia symptoms areoften described as 'younger people with dementia'or ‘early-onset dementia’ and make up more than5% of all those with dementia. In addition, werecognise that often, people with dementia haveother health conditions as well.

The emphasis in this strategy is on prevention,diagnosing well, living well, supporting well andplanning well. The strategy will help us to makebetter decisions about how we:

• Value and understand those living withdementia and their families and carers

• Enable independent living for longer

• Raise awareness and understanding amongstour residents

• Use our existing assets and resources

• Design and provide services

• Encourage service providers to work together

• Encourage partnership working betweenservices, service users and their families andcarers

We will ensure that this strategy and its action plansdo not stand alone, but are closely linked to otherstrategies and plans that also impact on living withdementia, for example, the Falls PreventionStrategy, the Carers Strategy and the Age FriendlyCities initiative. It will be evaluated and updated ona regular basis in light of progress, feedback(particularly from service users and theirfamilies/carers) and the evolving needs of ourcommunities.

04 Cheshire West and Chester Dementia Strategy

Introduction and background

Cheshire West and Chester Dementia Strategy 05

Cheshire West and Chester has a population ofapproximately 333,900 and covers 350 squaremiles. It includes the historic city of Chester and theindustrial and market towns of Ellesmere Port,Frodsham, Helsby, Malpas, Neston, Northwich andWinsford. About a third of the population lives inrural areas. According to the government’s ‘Indicesof Deprivation’, the overall quality of life is good formany residents. However, there are places wheresome communities experience multipledisadvantage.

Our population has an ageing profile, with thenumber of residents aged over 65 expected toincrease by over 50 per cent by 2029 and thoseover 85 will more than double. In 2014/2015 (thelatest data available), there were 2,780 people witha dementia diagnosis in Cheshire West and Chester.

Where are we now?

Smoking levels have fallenmarkedly in recent decadesand although our smokingrates are lower than theEngland average, they stillremain a cause forconcern. 13% of adults inCheshire West and Chestercurrently smoke

Estimated levels ofadult excess weight(64.6%) are the sameas the Englandaverage

Almost half of ChesterWest and Chester’sadults do not eat therecommended amountof fruit and vegetables(5 a day) on a daily basis

Estimates indicate thata higher percentage ofresidents aged 16 andover drink alcoholcompared to theEngland average

Almost half ofCheshire West andChester’s adults donot exercise enough

Key lifestyle issues which we know to have an impact on dementia include smoking,unhealthy weight, unhealthy diet, physical activity and alcohol overconsumption:

06 Cheshire West and Chester Dementia Strategy

Our vision for this strategy is:

‘to create a borough which supports and is inclusive of people with dementia and their carers so they canenjoy the best possible quality of life and remain independent longer. We will do this by working withcommunities and those with, and affected by dementia, to improve support and services thereby ensuringthere are opportunities to enable healthy, safe and fulfilling lives’

Our vision

Our principles1. Outcomes-focused

We want to put people living with, or affected by dementia at the heart of our strategy. We believe this will help toimprove their health and social care outcomes, and ensure there is autonomy and accountability.

2. Emphasis on local action

This strategy has been developed with local people, in particular, those living with, or affected by dementia. The strategyis shaped by the issues that are important to them. Individuals living with dementia and those who care for them knowwhat support they need and what needs to be done to improve services.

3. Innovation

We will find new ways of working that will serve people better. We will develop new models of support and servicedelivery through best practice, being creative and working across the health and social care system whilst ensuring aperson centered approach.

4. Advocate for change

We will commit to challenging attitudes, behaviours and terminology whenever possible to ensure we continuallyprogress our ambition to become a dementia inclusive borough. This includes workplaces as well as communities andpublic services.

Cheshire West and Chester Dementia Strategy 07

Our approach

1. Prevention

We know that reducing the risk ofdementia, or delaying the onset ofdementia, is influenced by a widerange of lifestyle factors.Establishing and maintaining ahealthy lifestyle is important tohelp lower the risk of dementia.Encouraging people (particularlyin their forties and fifties) toreduce their risk of dementia willsupport them in living longer,healthier lives.

2. Partnership working

Dementia should not be seen assimply the symptoms a personexhibits, but must be seen in its

widest context, taking intoaccount the persons’environment, the geographywithin which they live and thepeople who support them.

Many of the challenges that needto be addressed rely on thecombined efforts of a variety oforganisations in the public,private and voluntary sectors.

3. Evidence base

Decisions about services andprogrammes should be basedupon the best availableinformation and our strategy isbased on our knowledge of localneed as shown in the Joint

Strategic Needs Assessment.This ensures we make best useof resources, providing the bestpossible services and support.

4. Personal responsibility andempowerment

We want to develop a boroughthat fosters independence anddignity and ensures people livingwith dementia are valued. It isequally important to emphasisethe benefits - socially, mentallyand physically - that a healthylifestyle has on preventing, ordelaying the onset of dementiaand enabling people withdementia to live well.

08 Cheshire West and Chester Dementia Strategy

Prevention

Why is this a priority?

Reducing the risk of dementia, or delaying its onset, isinfluenced by a wide range of lifestyle factors.Establishing and maintaining a healthy lifestyle isimportant to help lower the risk of dementia, particularlyvascular dementia. Encouraging people (particularly intheir forties and fifties) to reduce their risk of dementiawill support them in living longer, healthier lives.

In Cheshire West and Chester we want to enable peopleto have a healthier lifestyle and be better able to managetheir own wellbeing and health. To achieve this, peopleneed to be supported in remaining independent and areencouraged to be open to early interventions.

Alzheimer’s disease is the most common form ofdementia, followed by vascular dementia. Up to 50% ofdementia cases may have a vascular component(vascular dementia or mixed dementia). Vasculardementia has the same risk factors as heart disease andstroke. Taking actions which promote prevention or earlydetection include leading a healthy lifestyle andeffectively controlling or treating diabetes, high bloodpressure and high cholesterol.

It is now believed that what is good for the heart is alsogood for the brain. There are a number of lifestyle factorsthat can increase the risk of dementia:

• A sedentary lifestyle (exercise in older people isassociated with a slower rate of decline in memoryand some thinking skills that occur with ageing)

• Excessive alcohol consumption (10% of thedementias are related to alcohol)

• Eating a poor diet high in saturated fat, sugar and saltand obesity in midlife

To reduce the risk of dementia or delay its onset, theNational Institute for Health and Care Excellence (NICE)suggest the following lifestyle changes:

• Stop smoking• Be more active• Reduce alcohol consumption (only drink within NHS

recommended limits) • Improve diet• Lose weight if necessary and maintain a healthy

weight

Keeping the brain active and challenged throughout lifemay help reduce dementia risk. Keeping mentally activeby learning new skills such as learning a second language,doing puzzles or joining clubs can be a good way toconnect with other people and improve mental healthand wellbeing. Improving social connectedness and beingsocially active can also help to reduce dementia risk by:

• Improving mood• Relieving stress• Reducing the risk of depression• Reducing loneliness

Outcomes

People over 40 years of age lead a healthier lifestyle.

Indicators

1. Percentage of adults that smoke2. Physical activity in adults3. Rate of alcohol related admissions to hospital4. Excess weight in adults5. Prevalence of depression

Diagnosing well Why is this a priority?

In Cheshire West and Chester we want to see morepeople being diagnosed early and less diagnosed ata time of crisis; a crisis that might have beenavoided if the diagnosis had been made earlier. Werecognise that services may need to be redesigned,so that people with dementia are diagnosed in atimely manner and that they and their carersreceive the right care and support, enabling them tolive as well as possible with dementia.

Early diagnosis and intervention are key toimproving quality of life. As diagnosis is the firststep, it is important to ensure there is informationand advice to help people exhibiting memoryproblems to present for assessment in a timelymanner, usually to their local GP. It takes a lot ofcourage to express concerns about memoryproblems to a relative, friend or clinician. Peoplewho are worried about their memory or someoneelse’s memory should have easy access toinformation about the early signs of dementia andsigns of other conditions related to memory loss.Information about prevention strategies andsupport should be easily available. Support andgood information should be available before andthroughout the assessment process. A core aim ofthis strategy is therefore to ensure that effectiveinformation and support for pre-diagnosis and earlydiagnosis is available.

Working with our local GPs is essential to ensurethat our residents are referred in a timely way forassessment and diagnosis and that people, who areworried about their symptoms, or theirfamily/carers, are provided with relevantinformation and advice. GPs also require thenecessary training to enable them to give adiagnosis of dementia. We also want to increaseeducation and training regardingidentification/screening, diagnosis and support, sothat people with dementia receive care from staffwho are appropriately trained in dementia care.

The drive to improve the diagnostic rate must notbe seen as an end in itself; improving the supportavailable to people once they have been given thediagnosis is equally as important. It is alsoimportant to recognise that contact with cliniciansis not restricted to general practitioners; there are arange of other professionals, for example, opticiansand pharmacists, who can be alerted to dementia-related problems.

Outcomes

There is good quality support and informationavailable to people from the pre diagnosis stage andthroughout the diagnosis journey and people knowwhere to access this.

Indicators

1. New dementia diagnosis with blood testrecorded between 12 months before and 6months after entering on to the register

2. People newly diagnosed with dementia and /ortheir carers receive written and verbalinformation about their condition, treatment andthe support options in their local area

Cheshire West and Chester Dementia Strategy 09

Living well Why is this a priority?

In Cheshire West and Chester we want to help andencourage those who live with dementia to remain asindependent as possible and continue to enjoy theirusual activities in environments that are well designedand supportive of their needs. We recognise that mostpeople with dementia live at home and are supportedby friends, neighbours and families; they want to beable to continue to do things and go to the places theyenjoy. We want to enable people who have beendiagnosed with dementia to live as full a life aspossible including maintaining their employment(those that are working at the time of diagnosis) andencourage our communities and workplaces to worktogether to help people to stay healthier for longer.

Across the borough we are striving to meet the PrimeMinister’s Challenge on Dementia which was launchedin 2012. It focuses on developing communities wherepeople are aware of and understand more aboutdementia, and enable those living with dementia tohave a sense of belonging and of being a valued part offamily, community and everyday life. Work witheducation (from primary schools to universities) isbeing encouraged to include dementia awareness intheir work programmes, leading to the creation ofdementia-friendly generations. The development ofdementia inclusive communities is also a key elementof the work required to meet this challenge and onewhich we have already seen great achievements beingmade locally.

Simple changes to existing services, and awarenessraising for those who come into day-to-day contactwith people with dementia, such as staff working inlibraries or in leisure centres, can help people withdementia feel more confident and welcome in usingCouncil and other services. Locally, we understand theimportance of listening to people living with dementia,their families and carers, to inform and enable changesacross all our services to:

• Raise awareness

• Challenge stigma

• Enable, inspire and facilitate dementia inclusivecommunities

We are committed to building on our achievements todate. These includes delivering dementia information

and awareness sessions that have resulted in thesigning up of over 5,500 dementia friends, and thework undertaken with Tesco in Chester that hasincreased staff awareness and established the UK’s firstdementia-friendly checkout. Work is now beingundertaken with our local high street banks and taxibusinesses.

We will improve the buildings and environments fromwhich services are delivered across the borough,ensuring any modernisation or planned designpromotes accessibility. These improvements will helppeople living with dementia remain independent andsocially connected. Local examples so far includeChester Storyhouse (the new cultural centre includingtheatre, cinema, library); Chester Northgate scheme(development including retail and leisure); Chester BusInterchange; Baron’s Quay (development inNorthwich); and Weaver Square redevelopment(Northwich town centre).

Outcomes

Cheshire West and Chester is a dementia inclusiveborough.

Indicators

1. People with dementia are enabled, with theinvolvement of their carers, to take part in activitiesbased on individual interest and choice

2. Proportion of adult carers who have as much socialcontact as they would like

3. Carer- reported quality of life score

Supporting well Why is this a priority?

Our mental and physical health are important whether weare living with a health condition or caring for someonewith a health condition. Evidence tells us that isolation anddepression are common amongst those living withdementia and those caring for someone with dementia. Itis therefore vital to ensure we provide the right care andsupport at the right time and in the right manner to thoseliving with dementia or their carers.

Many people are able to live well with dementia andcontinue to work following their diagnosis. In CheshireWest and Chester we believe that following a diagnosis,people who are still in employment should be supported tocontinue to work and engage in their regular activities for

10 Cheshire West and Chester Dementia Strategy

as long as possible. We want people within the boroughto have the support to build confidence and resilienceand be better able to cope with the condition.

It is likely that many people in the Cheshire West andChester area feel alone with their dementia, or theircaring role. Our approach is to support person-centredrelationships and this does not exclude people withdementia or their carers.

We also want to encourage discussions about life issuesin the broadest sense, at the earliest opportunity. Forexample, alongside memory assessment services thereshould be information about legal and financial issues(including Power of Attorney and benefit entitlement),assistive technology to maintain independent living,and driving assessments.

In Cheshire West and Chester we want to establish alevel of consistent support from GPs across theborough for carers, including ensuring carers areregistered as such; and signposting to resources, adviceand information. There is also a role for GPs insupporting people who may not have the benefit ofclose family carers or friends. This particularly relatesto those people who may already feel some degree ofisolation or exclusion, including those from BlackMinority Ethnic (BME) and Lesbian, Gay, Bisexual andTransgender (LGBT) communities.

Our residents have told us that there needs to be moreintegration and communication between local servicesavailable to people with dementia and their carers.

Local research also tells us that improvements can bemade in our hospitals. There needs to be a concertedeffort to raise awareness and ensure there is a level ofunderstanding of dementia amongst all staff cominginto contact with people with dementia and theircarers. In addition to working with staff, we want to beproactive in addressing care processes in hospitals toensure all stages of care from assessment to dischargeplanning are dementia inclusive and thereforedemonstrating good practice. We also need to ensurethat people’s physical health needs are addressed in theright place such as using hospital at home or step upbeds to reduce the level of disorientation in a personwho needs higher levels of care and support.

Knowing the population affected by dementia is anessential pre requisite to enable us to adequatelyresource services and provide the support needed asthey progress through further stages. We are awarethat this is an area of work that needs to be undertakenby all the major partners in the statutory and voluntarysector, with the involvement of those who are directlyaffected.

Lesbian, Gay, Bisexual, Transgender (LGBT) anddementia

Whilst LGBT people face the same health and careissues as everyone as they age, there are specific needsto be considered. The LGBT community is less likely toaccess services such as their GP early on. Older LGBTpeople may have grown up during a time when beinggay was illegal or LGBT was considered an illness,which could have resulted in a distrust of disclosingsexual orientation and gender identity to professionals.

LGBT people are more likely to be estranged from theirfamily and live alone; formal care is likely to be veryimportant to their quality of life. There are, however,fears of being in residential care or having a carer intheir own home, with the perception that their identitywill be made invisible. If they are transitioning or havetransitioned, there may be needs around medicationand an understanding of their own transition status asthey become increasingly affected by dementia.

We need to ensure staff are aware of the wider issuesand trained on equality and diversity. Services that arebeing delivered and the support offered to our residentsmust be equitable, respectful and LGBT friendly.

Outcomes

Those living with and affected by dementia are able tolead fulfilling lives and live independently for longer.

People with dementia are enabled, with theinvolvement of their carers, to access services that helpmaintain their physical and mental health andwellbeing

People with dementia receive care from staffappropriately trained in dementia care

People with dementia and their carers get the correctassessments and entitlements

Indicators

1. Evidence of local arrangements to ensure servicesare tailored to an individual's needs

2. Proportion of people with dementia whoseindividual needs are assessed and whose care planstates how these will be addressed

3. Proportion of carers who are satisfied with theservices they and the person they care for havereceived from Adult Social Care in the last 12months

Cheshire West and Chester Dementia Strategy 11

4. Proportion of carers who feel encouraged andsupported in their caring role

5. Proportion of carers whose health has been affectedby their caring role in the last 12 months

6. Number of Dementia Champions across the borough

7. Number of people living with dementia using assistivetechnology

Planning well Why is this a priority?

Following a diagnosis of dementia, putting legal,financial and end-of-life plans in place is one of themost important steps to take. The sooner plans areestablished, the better prepared the person withdementia and their carers and family will be.

Creating a plan for the future in the early stage of thedisease can be empowering, allowing the person withdementia to participate in making decisions that helpfamily and friends know their wishes. They can thenfocus on enjoying their life moving forward.

We want to ensure planning for the future starts early,to ensure the person with dementia is still able to makedecisions and is enabled and supported to express theirwishes at every step. Involving the family and managingtheir expectations is part of good quality care.

Outcomes

People with dementia are supported to put legal,financial and end-of-life plans in place.

Indicators

1. Evidence of local protocols on the discussion ofadvance decision- making

2. Proportion of people with dementia, while they havecapacity, and their carer/s, who are given theopportunity to discuss with health and social careprofessionals about the use of :

• Advance statements

• Advance decisions to refuse treatment

• Lasting Power of Attorney

• Preferred Priorities of Care

12 Cheshire West and Chester Dementia Strategy

CHESHIRE WEST AND CHESTER

• Joint scorecardKey statistical data monitored regularly by theDementia Strategy Working Group and theHealth and Wellbeing Board

• Exception reportingStatistical data which is escalated to the Healthand Wellbeing Board requiring review or action

• Health and wellbeing partnerships updatesUpdates will form part of a report that ispresented at every Health and Wellbeing Boardmeeting

• Themed discussionsThe Dementia Strategy Working Group willhave a rolling programme focusing on keyissues which will generate challenge and actions

• Peer reviewThe Dementia Strategy Working Group will seekto enhance the performance of the strategy andshare learning

• The voices of local people, service users,carers and wider partnershipThere will be regular opportunities for groupsand communities to feedback their own viewsand experiences

Performance framework for the strategy

Cheshire West and Chester Dementia Strategy 13

CHESHIRE WEST AND CHESTER

14 Cheshire West and Chester Dementia Strategy

This strategy sets out our ambition to create a placewhere people who are living with or affected bydementia can thrive. We hope that people will beless fearful of dementia and know it is possible tolive well with dementia. We also know that byadopting a healthy lifestyle we can delay or evenprevent the onset of dementia. By including a focuson healthy lifestyles, more people can enjoy moreactive and fulfilling lives.

The strategy and action plans will develop as goalsare achieved and circumstances change. We will beresponsive to the information we gain through the

continual involvement of organisations, groups andlocal people, particularly those living with andaffected by dementia.

The indicators will use existing performancemeasures and may require the creation of newperformance measures which align to the outcomesidentified within the strategy. The local DementiaStrategy Working Group will review the actionplans and the outcome measures at least annually.Progress and updates will also be provided regularlyto the Health and Wellbeing Board.

Conclusion

The Dementia Strategy Group is chaired by aConsultant in Public Health and has representativesfrom the following organisations and groups:

• Age UK

• Alzheimer’s Society

• Cheshire and Wirral PartnershipNHS Foundation Trust

• Cheshire West and Chester Council

• Countess of Chester NHS Foundation Trust Hospital

• Deafness Support Network

• Healthwatch

• NHS Vale Royal Clinical Commissioning Group

• NHS West Cheshire Clinical Commissioning Group

• Service User Representative

Membership

Cheshire West and Chester Dementia Strategy 15

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