The Prime Minister's Challenge on Dementia - A ... - Housing LIN

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The Prime Minister's Challenge on Dementia - A ... - Housing LIN

THE ong>Primeong>minister’schallengeon dementiaDelivering major improvementsin dementia care and researchby 2015: A report on progress


Publication date: 8 November 2012Gateway reference: 18175


ong>Primeong> Minister’s ong>Challengeong> on DementiaForewordDear ong>Primeong> MinisterDementia is now the greatest health concernfor people over 55 1 and the economic cost ofdementia is more than cancer, heart diseaseor stroke.In March at Alzheimer’s Society Dementia 2012conference you launched the ong>Primeong> Minister’song>Challengeong> on Dementia. In tasking the six of usas Co-chairs to lead your Champion Groups,you said:In less than ten years, as we all live longer lives,the number of people with dementia will reach amillion. 2 So my argument today is that we’ve got totreat this like the national crisis it is. We need anall-out fight-back against this disease; one that cutsacross society.Since you launched your ong>Challengeong> on Dementiaon 26 March 2012, we have marshalled some ofthe key minds in dementia research, the leadersof business and civic society and those that driveour health and social care system. Here wepresent our first report on initial progress madeover the past seven months.People with dementia and their carers are at theheart of our champion group discussions. Ourfocus is to improve treatments for people with thedisease from diagnosis until the end of life, andwhere possible prevent it from occurring or fromprogressing beyond a very early phase. Oursuccess would fundamentally change the courseof dementia. In this country, we have worldleading strength in neuroscience and some of thebest specialist research facilities in the world.We want to build on these strengths.At the same time we have also heard how muchcan – and must – be done to provide bettersupport to people with dementia today. We musttackle unacceptably low diagnosis rates; pooraccess to services; prolonged hospital stays; tooearly admission to nursing homes; poor care,isolation, neglect and despair, and inadequateinformation, advice and support for carers mustall be tackled. Over the past seven months wehave seen many examples of good practice acrossour health and care systems as well as examplesof the unacceptable. We must act to encouragethe poor performers to reach the standards ofthe best.As a result of the long-standing challenges in thesocial care system, people with dementia andtheir carers often report that they cannot accessgood quality care at the right time. Many also facehigh costs for care. We therefore welcome thecommitment that you and the government havemade to find a solution to the question of how wepay for care.Finally, we have been told how people withdementia are excluded from the society they livein, putting untold pressures on family carers andenormous reliance on charities that can reachsome but by no means all. ong>Theong> Dementia FriendlyCommunities Champion Group is showing howthis can change in the future. From banks to faithgroups; utilities to the fire service, fromshopkeepers to schools, we are already seeingnew commitments to people with dementia. Wealready see a growing movement of parish, townand city councils that are committing to addressthe question ‘how can we ensure that ourresidents find this a dementia-friendly place tolive well to the very end of their life’. And with thisreport we announce our ambition to create1 million ‘dementia friends’ across the country– an army of people who will understand betterthe challenge of dementia and how it is possibleto help.1 YouGov poll ‘What the world thinks’, 15 August 20112 Dementia UK 2007, Alzheimer’s Society, 20072


ong>Primeong> Minister’s ong>Challengeong> on DementiaCreating dementiafriendlycommunities thatunderstand how to helpong>Theong> challengeong>Theong> challenges people with dementia have to dealwith go far beyond a diagnosis and gettingsupport from the health and care system.People living with dementia often find everydaythings we all take for granted, like spending timewith friends and families, enjoying hobbies, goingshopping or getting money from the bank, muchmore difficult. 3A recent report from Alzheimer’s Society found asmany as 67% of people with dementia often do notfeel part of their community. 4People living with dementia said they commonlyexperience loneliness, isolation, anxiety anddepression and three quarters of people said theyfeel society is not geared up to deal with peoplewith dementia.Trevor Jarvis, who has dementia, told us about thedifficulties he has experienced accessing hissavings from a bank. He explained he finds it hardto remember his bank passwords and PINnumbers. A lack of understanding of dementiawithin the financial sector often makes it difficultfor people with dementia to use banking servicesand manage their money.Even using public transport, something most ofus take for granted, can prevent people who havedementia from being active in their community,leading to feelings of isolation. Difficulties inissues around communicating with the bus driver,getting off at the right bus stop and processinginformation can make it very hard to use buses.What we want to bedifferentWe want to create dementia-friendly communitiesacross the country. In these communities: peoplewill be aware of and understand more aboutdementia; people with dementia and their carerswill be encouraged to seek help and support; andpeople with dementia will feel included in theircommunity, be more independent and have morechoice and control over their lives.By 2015, our vision is to more than double ourinitial ambition of at least 20 cities, towns andvillages working towards becoming dementiafriendly.This means creating local Dementia ActionAlliances to bring together community leadersalongside people with dementia and their carersto identify the changes and action needed to maketheir community dementia friendly.It is about businesses, organisations and servicesunderstanding and responding to the needs ofpeople with dementia.Simple things, like changing the layout of a shop,improving or using different signage and trainingstaff so they are more aware of dementia canmake a difference. Even products can be designedand adapted to become dementia friendly.Our ambition is to support wider society to makethe change to enable people who have dementiato be able to confidently go about their daily livessafely and free from stigma.3 Dementia 2012: A national challenge, Alzheimer’s Society,20124 Dementia 2012: A national challenge, Alzheimer’s Society,20124


Creating dementia-friendly communities that understand how to helpWhat has been achievedso farIncreasing dementia awareness andunderstanding in specific sectors: Since thelaunch of the ong>Primeong> Minister’s ong>Challengeong>, creatingdementia-friendly organisations has been gainingmomentum. ong>Theong> Champion Group has identifiedan initial group of sectors that play a part in theeveryday lives of people who have dementia andaction has started towards them becomingdementia friendly.Much of the increased learning has been sharedin reports produced by, amongst others, theHousing and Learning Improvement Network,Local Government Association, Liverpool HopeUniversity and Joseph Rowntree Foundationworking with Alzheimer’s Society, Innovations inDementia and local Dementia Action Alliances. 5Financial Institutions: Financial institutions areworking together to create a ‘dementia-friendlyprotocol’. This will be a set of commonly agreedprinciples for consistent customer experiencethat is structured around the concepts of“Recognise, Understand, Respond”. This issomething that any financial institution canimplement so it can provide better support tocustomers with dementia and make it easier for5 http://www.local.gov.uk/c/document_library/get_file?uuid=0a7a291b-d6a3-4df6-9352-e2f3232db943&groupId=10171http://www.innovationsindementia.org.uk/projects_communities.htmhttp://www.housinglin.org.uk/Topics/browse/HousingandDementia/Design/?parent=5091&child=8525,http://www.housinglin.org.uk/_library/Resources/Housing/Support_materials/Other_reports_and_guidance/Neighbourhoods_for_Life_Checklist.pdfhttp://dementiacentre.com/files/downloads/Final_Report_HopePSS_Campaign_Week_Final_v2.pdfhttp://www.phine.org.uk/uploads/doc/vid_16756_Dementia_Friendly_Communities_Report_Final.pdfhttp://www.jrf.org.uk/publications/creating-dementiafriendly-yorkthem and their carers to be in control of theirfinances. An event, hosted by Lloyds BankingGroup, Nationwide, Aviva and Alzheimer’s Society– and attended by representatives from 24financial service organisations and industrybodies – initiated this work, with the ambition ofdeveloping the protocol by spring 2013. ong>Theong> workto develop the protocol will consider issues suchas staff training and supporting people withdementia to access their money, withoutcompromising on security.Schools: 21 schools have formed a “PioneerGroup” to develop dementia awareness sessionsfor children and young people across England.This is in recognition that the effects of dementiaare not only on the individual, but also on theirfamilies, and young people are often forgottenin this. ong>Theong> aim is that the sessions will educatechildren and young people about dementia,remove stigma and provide the opportunity forinteraction with people with dementia. We hopethat schools and youth projects nationwide willtake part from autumn 2013.5


ong>Primeong> Minister’s ong>Challengeong> on DementiaHelping children and young peopleto be dementia awareSwanshurst School is a secondary schoolwith 300 pupils in each year group.Birmingham is a multi-cultural city soSwanshurst has many different nationalitiesrepresented. ong>Theong>y have developed threelessons on dementia for Year 9 pupils, whichaim to:■■■■■■raise awareness of dementia;develop knowledge and understandingabout the types of dementia and itscauses; andunderstand how the chances of gettingdementia can be lessened.Douglas Smith, the teacher leading theproject said:“This is an incredibly important initiativebecause so many people are and will beaffected by dementia and we are proud to bein the pilot scheme. It is so important thatyoung people see that dementia is not aninevitable part of growing old and also thatearly detection will greatly help in slowingdown the illness. ong>Theong>re is also the veryimportant lifestyle message that living ahealthy lifestyle will lessen their chancesof getting dementia later. I cannot think of abetter way of getting the ‘don’t smoke, don’ttake drugs, don’t drink to excess, and eatsensibly’ message across than this.”Emergency Services: ong>Theong> Fire and RescueService have indicated that half of people who diein accidental house fires are over 65 years old.Two-thirds of people who have dementia live inthe community. 6 Recognising this, the Fire andRescue Service have made a Pledge on Dementia.ong>Theong> pledge commits Fire and Rescue services totake action to increase the safety of people withdementia, and increase awareness amongst theirstaff. Already 28 Fire and Rescue services havesigned up and a Dementia Awareness App isbeing developed to support fire service staff.Improving home safety for peoplewith dementiaong>Theong> Kent Fire and Rescue Service fittedsocket locks in a house belonging to a couplein their eighties. ong>Theong> husband, who hasdementia, had taken to putting his pyjamasinto the microwave to warm them up. His wifewas so worried about this that she wascarrying the microwave upstairs to thebedroom with her every night. ong>Theong> fireservice provided a lockable cover so all sheneeds to do is take the key with her when sheis not around. ong>Theong>y used the cover for thetoaster too, just in case he thought to usethat to warm his pyjamas.His daughter told us: “ong>Theong> help provided byKent Fire and Rescue Service was invaluable.I don’t think Mum and I could have coped overthe last year without it. Dad has now had to gointo residential care, but I have no doubt thatthe help they gave us meant he was able tostay at home much longer. And just asimportant it gave Mum real peace of mind andshe was able to sleep soundly – which meantshe could cope better with his day to day care.ong>Theong> lady who came to see us was absolutelylovely and made a real effort to communicatewith Mum, who is profoundly deaf. Advice onthings like escape plans and safety mightnot seem much, but they save lives justthe same.”6 Dementia UK 2007, Alzheimer’s Society 20076


Creating dementia-friendly communities that understand how to helpong>Theong> Association of Chief Police Officers (ACPO)are committed to this challenge and are able tostrategically oversee and offer guidance to allpolice forces in England and Wales, includingBritish Transport Police. People with dementiacan often find themselves in situations where theybecome lost or disorientated, which may lead tothem becoming vulnerable, due to their situationor circumstances. Some forces have developedan ‘Emergency’ (‘E card’) or ‘Keep Safe’ card forpeople with dementia to carry with them. GreaterManchester Police have circulated 36,000 ‘ECards’ within their area. Several forces havedeveloped specialist teams who work closely withother agencies to ensure that the police andpartners are responding in the most appropriateway to people living with dementia, which includesfamily and carers. ACPO is working with Forcesand the College of Policing to identify and sharegood practice.Energy providers: People with dementia canhave problems keeping their houses energyefficient and warm, as well as remembering tosubmit meter readings for utility usage andcontacting their utility suppliers if they havea problem.E.ON has committed to creating dementiachampions within their specialist customerservice teams, as a point of contact for otheradvisors who may need advice on how to helpcustomers with dementia. ong>Theong>y are also workingwith Alzheimer’s Society to increase awarenessof dementia, its symptoms and the extra supportrequired by those with the condition, among theircustomer service advisors. This will help ensurethat their customer services staff have theknowledge and understanding to better helppeople with dementia and their carers.E.ON is also trialling local Energy Health Checkevents for carers of people with dementia,covering energy efficiency measures and advice,tariff checks and advice on claiming benefits andadditional support including the Warm HomeDiscount. This will significantly improve theservice provided to people with dementia and helpensure accurate energy bills.Telecommunications: BT and Alzheimer’s Societyhave committed to produce a fact sheet ondementia for customer facing employees to helpthem to become more aware and deliver a betterservice to those living with dementia.ong>Theong> Direct Marketing Association, a membershipbody of 800 organisations, has developed a bestpractice guide for call centres for vulnerablecustomers to include specific reference to peoplewith dementia. This guide will help those workingin call centres respond to people with dementia ina supportive way and will give call centre staff alevel of confidence when speaking to customers.Leisure: ong>Theong> Bingo Association is promotingAlzheimer’s Society resources about dementiato its member companies to help them becomemore dementia aware. This will give bingo clubsthe understanding to help people with dementiaand enable people with dementia to make themost of bingo as a leisure activity.ong>Theong> British Museum hosted an event to explorehow museums and galleries could become agefriendly. As a result of this they will prioritise howthey can meet the needs of people with dementia.Alzheimer’s Society and others are working withother organisations in the museums and galleriessector so best practice can be shared.7


ong>Primeong> Minister’s ong>Challengeong> on DementiaHouse of Memories – NationalMuseums Liverpoolong>Theong> House of Memories is centred on thefantastic objects, archives and stories at theMuseum of Liverpool and is delivered inpartnership with a training provider, AFTAThought. ong>Theong> programme provides social carestaff, in home settings and residential settings,with the skills and resources they need toinform their practice and support people livingwith dementia. ong>Theong>y can help unlock thememory that is waiting to be shared, andprovide a stimulating and rewardingexperience for the person living with dementia.Carol Rogers, Executive Director, Education,Communities and Visitors said:“ong>Theong> House of Memories uniquelydemonstrates the power of National MuseumsLiverpool to positively change people’s lives.We have truly valued the opportunity todevelop a very special training programme forthe health and social care workforce in ourregion. We have witnessed a real passion andwillingness from participants to positivelyengage with new ideas that have refreshedtheir knowledge and raised awareness ofuntapped cultural resources that can supportpeople to live well with dementia. We want tosee a House of Memories in every town andcity and support the development of dementiafriendlycommunities. Our ambition is fuelledby a strong desire to continue to support theexceptional workforce that cares for thegrowing number of people living with dementiain the UK.”Transport: First Group plc are providing 17,000of their bus drivers with dementia awarenesstraining in order to improve understanding ofdementia and some of the challenges people withdementia face in using public transport. ong>Theong>y aredeveloping a new training module component ondementia for their Driver Certificate ofProfessional Competence. ong>Theong>y are alsodeveloping their safe journey cards forpassengers with dementia. This means that FirstGroup staff will be aware of people with dementiausing their buses and can ensure that they canuse the bus service safely and get to theirdestination.Transport for London has also launched theTravel Support Card aimed to make travel easierfor people with hidden disabilities. It isparticularly useful for those with communication,learning or cognitive disabilities, who may find itdifficult speaking with staff or asking forassistance.Retail: When shopping in unfamiliar areas orlarger supermarkets, some people with dementiasaid they sometimes lacked confidence or feltpressurised. This is because staff are unlikely tobe aware that they have dementia and that theymay need more time to count change orunderstand instructions. In response to this Tescoare committed to looking at ways to increasedementia awareness and understanding withtheir staff. ong>Theong>y have worked with Alzheimer’sSociety to produce a DVD which will be pilotedwith Tesco staff to help raise awareness ofdementia and help staff to better supportcustomers with dementia.For retailers, as for other employers, we arealso looking at improving their understanding ofdementia and ways of supporting people caringfor family members with dementia.Communities committed to becoming dementiafriendly: What we see as a dementia-friendlycommunity is one that shows a high level of publicawareness and understanding so that people withdementia and their carers are encouraged to seekhelp and are supported by their community. Suchcommunities are more inclusive of people with8


Creating dementia-friendly communities that understand how to helpdementia, and improve their ability to remainindependent and have choice and control overtheir lives.It will take time for communities to become trulydementia friendly, but we’ve made a great startand interest around the country is growing by theday. Already we know of groups in over 20 areas,including Leeds, Sheffield, Bradford, Liverpool,Wakefield, Plymouth, Wolverhampton,Northamptonshire, York, Wokingham, Torbay,Salford, Falmouth, Hampshire, Tavistock,Thurrock, Crawley, Bracknell Forest, Oxfordshire,Leicestershire, Nottingham and Lincoln that havenow committed to working towards becomingdementia-friendly villages, towns and cities. Aswe develop a process and criteria for developingdementia-friendly communities we expect thisnumber to grow.Dementia-friendly parishes aroundthe YealmIt is not just cities and towns that are seekingto become dementia friendly. For example, fiveparishes around the River Yealm in SouthDevon have come together and committed toimprove and change the lives of people withdementia and their carers.To help deliver this innovative two year projecta co-ordinator has been employed in theParishes of Brixton, Yealmpton, Wembury,Newton and Noss and Holbeton to developdementia-friendly parishes. Some of the keyaims of dementia-friendly parishes around theYealm are to promote individual and communitybased activities for people with dementia andtheir carers, contribute to the development ofsustainable inclusive social activities andservices and ensure people with dementia andtheir families have a voice and are able tomaintain, and where necessary, increase theirsocial contacts within their local community.Thirty new members have signed up to theDementia Action Alliance (DAA), taking thenumber of bodies and organisations to nearly 140.Each organisation has produced an action plan onwhat they will do to become more dementiafriendly. ong>Theong> DAA is a membership bodycommitted to transforming the quality of life ofpeople living with dementia in the UK and themillions of people who care for them.Dementia Awareness campaign: On WorldAlzheimer’s Day 2012, the Department of Health,in partnership with Alzheimer’s Society, launchedthe latest phase of its early diagnosis awarenessadvertising campaign. ong>Theong> campaign runs untilJanuary 2013, and encourages people to visit theirdoctor if they are worried about dementia.What we’re going to donextWe know that the journey towards becomingdementia friendly will differ depending on the typeand size of an organisation and the make-up of acommunity. ong>Theong> aims of the Champion Group areto increase awareness, understanding and actionwithin communities. We will instigate, expand andsupport the necessary change for communities tobecome dementia friendly and undertake anumber of actions.Raising awareness and understanding acrosssociety: On 8 November 2012, we launched anew programme to educate 1 million people tobecome ‘dementia friends’ by 2015. Through thisprogramme, we will increase awareness andunderstanding of dementia across society, inboardrooms and workplaces, community halls,churches and schools. Awareness training is justthe first step. Over time we hope that dementiafriends will go on to learn more or participate inways to help support people with dementia,through volunteering.9


ong>Primeong> Minister’s ong>Challengeong> on DementiaLaunching a dementia-friendly communitiessymbol: To recognise those who are dementiaaware, and in association with the dementiafriends programme, we have created a dementiafriendlysymbol – the forget-me-not. Beyond thedementia friends programme, we will use thesymbol to recognise dementia-friendlycommunities, companies and other organisations.Encouraging more communities to commit tobeing more dementia friendly: By 2015, ourvision is to more than double our initial ambitionof at least 20 cities, towns and villages workingtowards becoming dementia friendly. In practice,this will mean the establishment of localDementia Action Alliances and other forumsbringing together key stakeholders within acommunity alongside people with dementia andtheir carers to identify the key changes requiredto make their community dementia friendly andthe action that needs to be taken.Working with faith groups: Early discussionshave taken place about the role of faithcommunities in delivering dementia-friendlycommunities. In January 2013, an inter-faithmeeting will discuss how to progress work withinfaith communities on dementia.Harnessing technology: ong>Theong>re are many waystechnology can transform everyday life for peopleaffected by dementia, including assistivetechnology, social networks and smarterinformation provision. We will be holdingdiscussion groups with key technology inventorsand providers to better focus and harness theirtalent.the design of products and adapting them tobecome dementia friendly. We will work withrepresentatives of industry to identify what itmeans to be dementia friendly and to help themwork towards this. As well as the representativesalready identified, we will expand our reach toinclude other sectors that have a big impact onthe lives of people with dementia, for exampleplumbers, electricians, beauticians andhairdressers.ong>Theong> work of the Champion Group has helped toidentify some of the key products and servicesthat people with dementia and their carers relyon in order to live well in their community. It hasalso pointed to some priority areas of action thatthe Champion Group should focus on over thenext six months. ong>Theong>se include:■■■■■■■■identifying what it means to be dementiafriendly;increasing awareness and understanding;development of effective training and learningmaterials for organisations; andidentifying the support that organisations andcommunities need to become dementiafriendly.As a shared priority, the group will focus onwidening engagement across the public, privateand voluntary sector so that action and support tocreate dementia-friendly communities continuesto gain momentum.Encouraging more companies to commit tobeing dementia friendly: To make a communityfriendly, businesses, organisations and servicesneed to understand and respond to the needs ofpeople with dementia. This may be about changesto signage, the layout of a shop or ensuringcustomer facing staff have undertaken dementiaawareness training. As well, it is about examining10


Driving improvements in health and careDriving improvementsin health and careong>Theong> challengeong>Theong> health and care system has a central roleto play in improving support for people withdementia. But it alone cannot tackle thechallenge. A wide range of organisations andservices, for example, housing, transport, leisureand welfare have a key role to play in ensuringthat people with dementia, their families andcarers can be active citizens with the potentialto live well with dementia at every stage of thecondition. Health and wellbeing boards willprovide a new and substantial opportunity to bringthese together through agreeing joint health andsocial care outcomes, local monitoring andchampioning quality and an improved experience.Across the system, health and social care andwider local government working with theindependent sector collectively can make adifference and overcome a number of challengesto improve care and support for people withdementia and their families and carers.Timely diagnosis: Dementia affects a largenumber of people, one in three people over 65 willdevelop dementia7 but currently only 42% ofpeople with dementia in England have a formaldiagnosis and too often, diagnosis comes too late. 8In the report of the National Audit of MemoryServices published in September 2011 94% of allPCTs that responded to the audit reported havinga memory service in place. 9 It is not clear,however what capacity these memory serviceshave to diagnose people with dementia in a timelyway. ong>Theong> services available and the way they areorganised, vary from area to area.High-quality, compassionate care in hospital:A quarter of all hospital beds are occupied bysomeone with dementia and people with dementiastay longer in hospital, but we know that somehospitals struggle to provide the high-quality carethat meets the needs of people with dementia. 10High-quality, compassionate care in thecommunity: An estimated two-thirds of peoplewith dementia live at home. 11 ong>Theong>re are problemsin some areas with the quality of domiciliarysocial care for people with dementia, includingcare staff who are not sufficiently trained inproviding person-centred support. ong>Theong>re can alsobe a lack of staff continuity, which can beconfusing for a person with dementia and causedistress. 127 Dementia 2012 report, Alzheimer’s Society, 20128 Quality and Outcomes Framework QOF Results 2010/11,NHS Information Centre, 20119 Establishment of Memory Services- Results of a survey ofPCTS, final figures 2011, NHS Information Centre, 201110 Counting the Cost: caring for people with dementia,Alzheimer’s Society, 200911 Living well with dementia: A National Dementia Strategy,Department of Health, 200912 Improving domiciliary care for people with dementia: aprovider perspective, South West Dementia Partnershipand the UK Home Care Association, 200911


ong>Primeong> Minister’s ong>Challengeong> on DementiaPeople living with dementia sometimes do nothave the same access to social care services,including re-ablement services, and healthintermediate care services after a stay in hospitalor to prevent admission in the first place.High quality, compassionate care in care homes:While many care homes offer excellent support,some are not doing enough to provide high quality,personalised care for people with dementia thathelp individuals to lead as fulfilling a life as possible.“Often, when people go into a care home, thecare homes are registered and they say thatthey can provide the care that the personneeds and they clearly can’t. You’re dealingwith a situation where people are being movedon all the time, not through any fault of theirsbut because the care homes haven’t got thequalified staff to deal with the issues that comeup with dementia.” (quote from a carer thatresponded to the consultation exercise on theNational Dementia Strategy)Information and support to make decisions andto plan care: Evidence suggests that for up to50% of people with dementia there may be a‘vascular’ component to their condition and weknow the effects of vascular dementia can beminimised or prevented altogether throughhealthy lifestyle. 13 Helping people to understandthe impact on lifestyle through better informationcould help people make informed lifestylechoices.ong>Theong> quality of advice and information that peoplereceive is variable. In all too many areas, it isextremely difficult for people who have dementiato find out what support is available and to whatthey are entitled. 14 ong>Theong>re is also a lack of13 Living well with dementia: A National Dementia Strategy,Department of Health, 200914 ong>Primeong> Minister’s challenge on dementia: Delivering majorimprovements in dementia care and research by 2015,Department of Health, 201212personalised support for people with dementiaafter they have been diagnosed, which is vitalto the approach of “no decision about me,without me”.“ong>Theong>y didn’t give me enough information.I came away thinking, “What do we do now,where do we go from here?” I have aprescription in one hand and a note for bloodtests in the other and nobody has said what theCAT scan showed…nobody has given me thatinformation. I am the person who is going todeal with (my husband).” (quote from a carerthat responded to the consultation exercise on theNational Dementia Strategy )We know that too many people with dementia arenot supported to have early discussions and makeplans for their end of life care. 15 This means thatdifficult, emotional decisions are often made incrisis and the person with dementia’s wishes,including for example where they want to die,cannot be taken into account.Support for carers: Research shows that carersof people with dementia experience greater strainand distress than carers of other people. 16 Mostfamily carers want to be able to provide support tohelp the person with dementia stay at home, butthey sometimes need more assistance in termsof information and advice on caring for someonewith dementia and support in looking after theirown health.Supporting health and care professionals:We know health and care professionals andothers involved in the care of people who mayhave dementia need more support to ensure theyhave the right skills and knowledge to provide thebest quality care. For example, only 31% of GPsbelieve they have received sufficient training to15 Difficult Conversations, National Council for PalliativeCare and the Dying Matters Coalition, 201116 Alzheimer’s Society 2011


Driving improvements in health and carediagnose and manage dementia. 17 We also knowthat more needs to be done to increase thecapability and skills of the workforce in thecare sector. 18ong>Theong> right treatment: Anti-psychotic drugs shouldonly be prescribed to people with dementia inexceptional circumstances and if prescribed, theperson should be reviewed on a regular basis.ong>Theong> place of pharmacological treatment indementia is described in the joint NICE/SCIEguideline. 19 ong>Theong>re has been a reduction in theprescribing of antipsychotic drugs nationally, butover prescribing is still a problem with wideregional variation. 20What we want to be differentOur ambition is to create a society whereeveryone diagnosed with dementia, their familiesand carers receive high quality and timely careand support regardless of the care setting.For example:■■■■■■■■more people to have an early diagnosis, withour diagnosis rates among the best in Europe;high quality care in hospitals, at home and incare homes;helpful information given to people at the righttime and effective signposting to local andnational services; andaccess for carers to support networks,information and respite care.17 Improving Services and support for people with dementia,NAO, 200718 Scoping Study Report, Department of Health/Skills forCare/Skills for Health, September 2010Mapping Existed Accredited Education/Training and GapAnalysis Report, Department of Health/Skills for Care/Skills for Health, September 201019 NICE clinical guideline on Dementia: publications.nice.org.uk/dementia-cg4220 National Dementia & Antipsychotic Prescribing Audit, 2012,NHS Information Centre, 2012What has been achievedso farImproving the quality of care in hospitals:Building on an objective within the NationalDementia Strategy to improve the quality of carefor people with dementia in general hospitals,including identifying a clinical leader for dementiain every hospital, the NHS Institute has set out acall to action for every hospital in England tocommit to being dementia friendly by 31 March2013. This means hospitals responding to thespecific needs of people with dementia and theircarers. ong>Theong> call to action involves people withdementia and their carers, and uses partnershipworking between the NHS, social care and thevoluntary sector to share best practice toimprove the quality of hospital care for peoplewith dementia.Since the introduction of the Commissioning forQuality and Innovation (CQUIN) payment tohospitals offering risk assessments to all over75s, 21 over 2800 people have been referred toa memory service. In total, approximately£54 million is available to hospitals through theseCQUIN payments. As more people in hospital arehaving their risk of dementia assessed, they willbe better able to manage the condition and itssymptoms and should receive better carein hospital.Improving the quality of care in care homes andcare at home: More care homes and providersare taking action to improve the quality ofdementia care, so that more people will getpersonalised care and support to enable them tolive well. From the initial 10 organisations thatsigned up to be part of the Dementia Care and21 ong>Primeong> Minister’s ong>Challengeong> on dementia: Delivering majorimprovements in dementia care and research by 2015,Department of Health, 201213


ong>Primeong> Minister’s ong>Challengeong> on DementiaSupport Compact there are now 42 signatoriesrepresenting over 1,800 care services – this willmean improved care for over 200,000 people. 22We are working with local authorities, housingassociations, care homes and domiciliary careassociations to encourage their members to signup to the Compact and to take specific action todevelop innovative fit-for-purpose solutions tohelp people stay at home with the right level ofpersonalised support.Improving housing choices: ong>Theong>re is a need fora clearer understanding of the role good housingplays in helping people with dementia to liveindependently for longer and improving the qualityof care and support on offer. ong>Theong> Department ofHealth, working with the Homes and CommunitiesAgency and the Greater London Authority (forLondon based schemes), has committed up to£300 million over five years to encourage localauthorities to build effective partnerships withhousing associations and private house-buildersto develop innovative housing solutions for peoplewith long term conditions, including dementia. 23We are working with the Royal College ofPsychiatrists Memory Services NationalAccreditation Programme (MSNAP) 24 to assureand improve the quality of memory services forpeople with memory problems and dementia.MSNAP engages staff in a comprehensiveprocess of review, through which good practiceand high quality care are recognised, and servicesare supported to identify and address areas forimprovement. ong>Theong>re are currently only 34accredited memory services. We have writtento the NHS to encourage memory services tosign up to MSNAP 25 and to also sign up to theNational Memory Services Register. This willenable us to develop a complete map of servicesacross England.We will use the NHS Outcomes Framework2013/14 to measure progress on diagnosis rates.Early diagnosis will help people with dementiahave more control and to be better able tomanage the condition, cope with the symptoms,plan and make informed choices about how theywould like to be cared for.Improving dementia diagnosis rates: We havedeveloped an analytical model toolkit to supportthe NHS to achieve a significant increase indiagnosis rates from the current 42%. It willsupport clinical commissioning groups to seta local ambition to improve their dementiadiagnosis rate, commission sufficient memoryservices to deliver their ambition, and to trackand demonstrate their progress.22 ong>Theong> full list of signatories can be found at:http://www.ecca.org.uk/article/prime-ministerschallenge-on-dementia-list-of-signatories/23 http://www.homesandcommunities.co.uk/ourwork/careand-support-specialised-housing-fund1424 www.rcpsych.ac.uk/quality/qualityandaccreditation/memoryservices/memoryservicesaccreditation.aspx25 http://www.rcpsych.ac.uk/quality/qualityandaccreditation/memoryservices/memoryservicesaccreditation/memoryservicesregister/registeredservices.aspx


Driving improvements in health and careHow early diagnosis helps“My mother Pauline was diagnosed withAlzheimer’s disease in 2006. Her practicalityand creative spirit helped her deal with thistraumatic news. Afterwards, Mum told otherpeople about it, so sharing this information wasclearly important. We were advised toestablish Power of Attorney and arrangeMum’s will and legal affairs while she still hadcapacity to make decisions.Since her partner’s death four years ago, Mumhas remained at home with live-in carers. Herspeech has changed, words slip, and sheconfuses people, places and time easily. ong>Theong>carers provide the physical care and supportMum needs, while helping her maintain herindependence where possible. A family friendkeeps an eye on things, and I visit regularly.She has a weekly timetable of events to providestimulation and activity, including anAlzheimer’s Society art group and a choir,organised by Dementia Compass.Early diagnosis helped my mum to make theright legal arrangements and to establish asystem of care, which gradually evolved alongwith her needs. ong>Theong> care package has enabledher to stay in her own home. Her GP hasprovided great support throughout. Did earlydiagnosis help us access services earlier? Yes.Financial arrangements to provide care forsomeone in their home are complicated and ittakes perseverance to understand what isneeded, and what is available.”(James Murray-White, a carer)Improving education and training for GPs ondementia: We will shortly be putting out a tenderfor the development of a toolkit to support GPs tounderstand, diagnose and support people withdementia, as well as help their families andcarers. ong>Theong> toolkit will be available next year andwill complement the analytical model.Improving end of life care: Working with theNational Council for Palliative Care (NCPC) andothers, we are working to raise awareness withhealth and care professionals of the possiblealternatives to hospitalisation so that people withdementia have more choice and control over theircare. To support ‘planning ahead’ discussions andto ensure that peoples’ needs and wishes arerespected, the NCPC has developed a leaflet tohelp GPs have these important conversations in asensitive way with patients and carers. Practicalguidance for all professionals and carers will belaunched in 2013.Encouraging innovation in dementia care: Threeprize funds have been established as follows:■■■■ong>Theong> Innovation ong>Challengeong> Prize for Dementia,announced by the ong>Primeong> Minister in March,was formally launched by the Secretary ofState for Health on 25 June. 26 ong>Theong> ong>Challengeong>is making £1 million available to the NHS forprojects that demonstrate innovative ways ofachieving a dramatic reduction in theproportion of people who have undiagnoseddementia, with evidence of a step change in thediagnosis rate and a strong service response.To date 28 expressions of interest have beenreceived. ong>Theong> prize winners will be announcedin 2014.Nationally, a new partnership between theDepartment of Health and Janssen HealthcareInnovation (JHI) has been established to createa ong>Challengeong> Prize for those who supportpeople with dementia. ong>Theong> prize, of up to26 www.challengeprizes.institute.nhs.uk/the-challenges/breakthrough-challenges/dementia-challenge/15


ong>Primeong> Minister’s ong>Challengeong> on Dementia■■£150,000, is being provided by JHI for evidenceof meeting the challenge in a sustained waythat can be spread across the NHS andsocial care. 27NHS South of England have announced aregional Dementia ong>Challengeong> Fund of £10million to support the adoption and spread ofproven innovations in dementia care. Awardswill be made this month.Supporting the workforce through networksand training: ong>Theong> NHS Commissioning BoardAuthority has created a Strategic Clinical Networkfor Mental Health, Dementia and Neurologicalconditions. ong>Theong> network will help NHScommissioners to reduce unwarranted variationsin services and to encourage innovation.Via Skills for Care, the Department of Health hasa fund of £2.4 million for social care employersand providers who support people with dementia,including those who employ their own supportstaff, to build the skills of their employees bycompleting relevant accredited qualifications.On 8 June 2012, e-learning for Healthcarepublished an e-learning package, funded by theDepartment of Health, to train health and socialcare staff in recognising, assessing and managingdementia and providing high quality dementiacare. ong>Theong>re are ten sessions covering a widerange of issues relevant to dementia, such asdiagnosis of dementia and managing symptoms.ong>Theong> first session, on general dementiaawareness, is also available to the public and toanyone working in the public environment such asshops, transport and banks.Improving information provision: ong>Theong>government’s information strategy for health andsocial care in England ‘ong>Theong> power of information’published in May 2012 aims to harnessinformation and new technologies to achievehigher quality care and improve outcomes forpatients, families and the public.ong>Theong> Our Health website 28 is the first of its kind inEngland. It aims to transform the way patients,their carers and health professionals access andshare the latest information on a range of keylocal health and care services across the SouthWest. ong>Theong> website now offers the mostcomprehensive local service directory inthe region. Our Health publishes the localperformance of health and care services forpeople with dementia through 25 indicatorscovering the whole spectrum of dementiaservices. This enables comparison betweenlocalities that can support patients and carers inmaking choices about their care and support anddemanding improvements in local services. Aspart of the PM’s Dementia ong>Challengeong>, Our Healthis being rolled out across the South of England bythe end of December 2012 and similar serviceswill be available across England by the end ofMarch 2013.More generally, we are making links to theproposals for improving the provision ofinformation as set out in the White Paper ‘Caringfor our Future: Reforming Care and Support’’. Thisincludes every registered residential or homecare provider having a provider quality profile onthe NHS and social care information website. 29By April 2013, the Department of Health will alsopublish clear and accessible information on stafftraining as part of the provider quality profiles, sothat people can understand the skill mix of staffat different care providers. We are working toensure that services and support for people withdementia and their families is a key considerationin the implementation of the White Paper.27 http://www.challengeprizes.institute.nhs.uk/thechallenges/partnership-challenges/1628 www.ourhealth.southwest.nhs.uk29 www.nhs.uk


Driving improvements in health and care“For me, the chance to give feedback onservices and share my experiences on theonline forum is a really important part of thewebsite and one that will help to shape andimprove services in future.”Norms McNamara was diagnosed with earlyonset Alzheimer’s disease in September 2008,aged 50“Publishing meaningful data about serviceswill help to drive improvements in thoseservices, as well as help patients and theirfamilies to make informed decisions abouttheir care. Planning for the future isparticularly helpful for people with dementia,their families and carers, and knowing what isavailable locally can help this immensely.”Dr Nick Cartmell, a GP and Dementia Leadin DevonBetter support for carers: Dementia cafes – likethose set up in Dartford, Gravesend and Swanley– are helping to reduce social isolation andproviding tools to enable carers and the personwith dementia to live well with dementia.Mrs D’s daughter says: “Mum and I really enjoythe cafés, especially the variety of talks andentertainment that we have. Everyone joins inand is friendly. It’s a pleasant way to spend theafternoon. It is a huge benefit. Every talk hasbeen helpful, for instance we got Mum a GPSwatch after one talk. ong>Theong> entertainment suchas the singing, dancing and exercises has beengood. Mixing with other people has helped usto see that we are not on our own.”Another carer wrote about her experience at thedementia café:“It was a lifeline to find the Dementia Café andenjoy the tea and biscuits and to be able to talkto other carers and staff about day to dayproblems and happenings with my husbandJohn. I particularly look forward to theinteresting guest speakers and have benefittedfrom their knowledge and learnt what isavailable to carers, especially Kent CarersEmergency Service and the AdvocacyServices. ong>Theong> staff work hard to provide avaried programme, including entertainmentwhich makes a very happy and relaxingatmosphere which we both look forward to.”“I have seen a couple in my surgery thisevening, who have just been awarded a break.ong>Theong> husband’s mum has dementia. ong>Theong> stresshas been one of the causes of the wife having asignificant episode of depression this year. Onlywhen I tried to delve into possible stresses shehad, did I find they were supporting herhusband’s mother. ong>Theong>y did not even considerthemselves as carers. ong>Theong>y are overwhelmedwith the carers break and the husband said hefelt humbled that they should have it. ong>Theong> wifeis already starting to get better!”Dr. Yvonne Collins, North West Surrey DementiaCCG lead17


ong>Primeong> Minister’s ong>Challengeong> on DementiaWhat we’re going todo nextOur ambition for the coming year is to supportpeople with dementia to live well with dementiain all care settings. We want to galvaniseengagement and support for this importantagenda working with the other Champion Groups.Having listened to the views from the public viathe Dementia ong>Challengeong> website, we havedeveloped an action plan setting out 15 prioritywork areas. ong>Theong> plan widens the challenge toencompass social care and integration issuesincluding, for example, extending the scope of thework to include end of life care, rehabilitation,reablement and housing. ong>Theong> priorities for thenext phase of the Champion Group’s work includethe following:Commissioning effective, high-quality care:We will build understanding and capacity aboutcommissioning services for people with dementia,working with health and wellbeing boards, clinicalcommissioning groups, with Healthwatch andPublic Health England to raise their awarenessof the Dementia ong>Challengeong> and support themto promote and deliver integrated, qualitydementia care.We will spread best practice about high qualitydementia care and disseminate learning about theeffectiveness of personal budgets for people withdementia. We will also share training materialsfor staff within health, social care and housing,and for carers of people with dementia, with theaim of providing better support to carers.Working closely with the Dementia FriendlyCommunities Champion Group, we will supportthe full range of health and care services indifferent settings to become “dementia friendly”.This includes supporting the Department ofHealth’s work programme on improving healthand care environments for people with dementiaand their carers. On 25 October the Secretaryof State for Health announced that £50 millioncapital funding is being made available in 2013-14for the NHS and local authorities to work withproviders to create care environments to helppeople with dementia live well with the condition.ong>Theong> findings and evidence from the pilotprojects will be used to develop future guidancein this area.Timely diagnosis: We will step up work with GPsand other health and care professionals to drivesignificant improvements in the diagnosis ofdementia. We will work with the NHS HealthCheck programme, so that from April 2013 peopleaged 65 to 74 will be given information at the timeof the risk assessment to raise their awareness ofdementia and the availability of memory services.This will help to ensure that people with dementiaare diagnosed at an earlier stage.We will support an increase in the coverage andaccreditation of memory services and roll-out theinformation offer pioneered by the South Westacross England.To measure progress on the coverage andcapacity of memory services the Department ofHealth will re-run the National Audit of MemoryServices, which reported its first results inSeptember 2011.High quality, compassionate care in hospitals:From April 2013, we will extend the DementiaCommissioning for Quality and Innovation (CQUIN)to include measures of the quality of dementiacare in hospital and support for carers of peoplewith dementia.High quality, compassionate care in thecommunity: We will encourage local authorities,housing associations, care homes and domiciliarycare associations to sign up to the Dementia Careand Support Compact and take action to developinnovative fit-for-purpose solutions to help peoplestay at home with the right level of personalised18


Driving improvements in health and caresupport. ong>Theong> provider quality profile on the NHSand social care information website will highlightif providers have signed up to the Compact. Wewill work with health and wellbeing boards toensure that people with dementia get equalaccess to intermediate care or re-ablementservices including telecare and home adaptations.We will also continue to work with the NationalCouncil for Palliative Care and other keyorganisations to support access to high qualitypersonalised end of life care for people withdementia. ong>Theong> NCPC is launching in December2012 a dementia specific communications trainingprogramme to support staff in different caresettings to be skilled in end of life conversations.To support health and care professionals apractical guide for the recognition, assessmentand management of pain in people with dementia,including an assessment of hydration andmalnutrition, is also being developed andwill be available in December 2012.Supporting health and care professionals:To better support staff, we will continue to takeaction to improve the whole health and social careworkforce (in the statutory, third and independentsectors) to be positive, have the right level ofexpertise for their role, deliver excellentstandards of care and have the confidence toinvolve people and families in designing careand support.ong>Theong> right treatment: Finally, we will work withthe NHS Institute and other stakeholders tounderstand reasons for regional variations in theprescribing of antipsychotic medication and howthis can be addressed. ong>Theong> Department of Healthwill re-run the national audit into the prescribingof these drugs to monitor the level of prescribingand regional variation.ong>Theong>re is much to do, but we are determined tomake a difference and look forward to makingprogress in the next phase of our work.19


ong>Primeong> Minister’s ong>Challengeong> on DementiaBetter researchong>Theong> challengeong>Theong> ageing population will result in more andmore people developing dementia. ong>Theong>y and theirfamilies will need appropriate and effectivediagnosis, assessment, treatment, managementand care.Some of the most critical discoveries inAlzheimer’s disease were made in the UK, and weremain at the forefront of advanced diagnosticinvestigative techniques. Our companies andresearchers already punch above their weight intaking technology from clinical trials into clinicalpractice.According to the Association of the BritishPharmaceutical Industry, globally there is apipeline of over 200 medicines for dementia invarious stages of development. 30 Many of thesemedicines are likely to work best if treatmentstarts before significant damage to the brain hasoccurred. To help develop effective medicines, theUK is working to identify and work with patients atan earlier stage.Our focus is to improve treatments for peoplewith dementia and if possible, prevent it fromoccurring in the first place or at least slowingit from progressing beyond a very early phase.Without intense research, we can make onlylimited progress in our understanding ofdementia.We want to build on our strengths and end up withbetter outcomes for people with dementia. If weare successful, we will fundamentally change thecourse of dementia.1. ong>Theong> NHS is unique in the world as a resource for patients anddata.2. UK researchers welcome collaboration with the UK and globallife-science industry.In this country, we have worldleading specialist facilitiesand strengths inneuroscience.3. ong>Theong> UK has the unique capability to combine world-leadingresearch in genetics, cognitive neuroscience and neuroimagingwith very large population and patient cohorts.4. Different types of clinical and non-clinical research studies areunderway that aim to advance treatment and care.5. ong>Theong>re is a new legal requirement on the Secretary of State forHealth, the NHS Commissioning Board, clinical commissioninggroups and Monitor to promote research and the use ofresearch evidence.2030 Personal Communication. Stephen Whitehead, CEO, ong>Theong>Association of the British Pharmaceutical Industry


Better researchWhat is dementia?Dementia is a syndrome and refers to theimpairment of cognitive brain functions ofmemory, language, perception and thought.ong>Theong>re are many diseases that cause dementiasuch as Alzheimer’s disease, dementia withLewy bodies and Parkinson’s Diseaseassociateddementia. ong>Theong> majority aredegenerative but not all, for example, vasculardementia. Dementia is not a single disease.We do not yet fully understand the balance ofgenetics and environmental causes that lead tothe diseases associated with dementia. We doknow, however, that there are only a very smallnumber of dementia diseases where singlegenetic defects are largely responsible. At themoment, there are very few disease-modifyingtreatments available for dementia.Why is it so difficult to find treatmentsthat slow or stop dementia?Today important trials for the treatmentof dementias often focus on patients at arelatively late stage of disease. For thesepatients, some of the damage to the brain maybe largely irreversible and may explain someof the lack of success.Many scientists now believe that trials willneed to happen much earlier in the course ofthe disease and run over a longer period. Moreresearch could be done if research cost less tocarry out. We also need a new approach tosome of the research we do, to detect andassess the benefit of therapies moreeffectively.We need new breakthroughs to improve ourunderstanding of the mechanisms underlyingthe development and progression of dementia,with a focus to identify new targets forintervention.21


ong>Primeong> Minister’s ong>Challengeong> on DementiaWe must develop drug and non-drug interventionsthat manage the symptoms of dementia, as wellas slowing progression, helping people who havemore than one illness and maintainingindependence. This is particularly difficultbecause some patients are reluctant to enrol inresearch studies. Changing that is essential.Why is it important to involve patientsin clinical research?To discover which treatments work for whichpatients, researchers need to access wellcharacterisedpatients in whom we canmeasure disease progression. We also need tounderstand disease sub groups and follow theimpact of the treatment they receive over time.In response to this:■■■■ong>Theong> Government has put in place newinitiatives to enable more patients to find outabout and volunteer for research. This willhelp to make it easier to identify and work inpartnership with groups of patients withmany different types of dementia and otherneurodegenerative diseases.NIHR Dementias and NeurodegenerativeDisease Research Network (NIHRDeNDRoN) and the UK Clinical TrialsGateway are making it easier for the publicto get information about and participate in,clinical trials. For companies, NIHRDeNDRoN supports the delivery of worldclassresearch in the NHS. It also providesa single point of access to the entire NHSclinical research infrastructure.What have we achievedalready?Patients and their data: Since the launch of theong>Primeong> Minister’s ong>Challengeong>, the NIHR and theMedicines and Healthcare Products RegulatoryAgency have launched the Clinical PracticeResearch Datalink (CPRD) service to allow betteraccess to anonymised NHS patient data. ong>Theong>CPRD service, jointly funded by the NIHR and theMedicines and Healthcare Products RegulatoryAgency, is designed to maximise the wayanonymised NHS clinical data can be used. It willfacilitate studies of epidemiology, diagnosis, carepathways, drug effects and side effects andoutcomes research. CPRD will make clinicaltrials more efficient.£9.6 million has been provided by the MRC toexpand the UK Biobank. This is the first phase offunding with the aim to undertake further studiessuch as scanning the brains of up to 100,000Biobank volunteers. ong>Theong> UK Biobank, a uniquenational epidemiological resource of 500,000individuals aged 40-69 years, will provide aplatform for future dementia research. Thisoffers a unique dataset that will allow furtherprospective studies linked to clinical histories,cognitive assessments and associated DNA,blood, urine and saliva samples. ong>Theong> informationwill help scientists discover how some peopledevelop dementia and others do not.NIHR DeNDRoN is enabling more people to signup for research. It has established a system tohelp people find and join research studies. Thiswill help increase public participation in researchfrom the current low level of approximately 4% ofpeople known to have dementia. It is creating alarge disease register of patients with dementia.22


Better researchDiscovery science: ong>Theong> UK is investing in the verylatest technology to model disease and bettertarget drugs specifically to an individual patientusing the patient’s own genetic information.ong>Theong> MRC has provided 50% more money forneuroscience research, with an expansion of itsprogrammes investigating neurodegenerativedisease, at the internationally renowned MRCLaboratory of Molecular Biology, Cambridge thathas increased its capacity to undertake research.This means a commitment of £29 million over thenext three years, with a further indicative budgetof £10 million for each of 2015/16 and 2016/17.UK involvement through the MRC in theinternational Centres of Excellence inNeurodegeneration (COEN) initiative, with sevenother national funding partners, is linking nationalcentres of excellence so these can share the bestknowledge.ong>Theong> MRC and the NIHR have invested £10 millionin a new national Phenome Centre, the first ofits kind in the world, to enable researchers toexplore the characteristics of diseases in order todevelop new drugs and treatments for patients.Researchers at the Centre will investigate thephenome patterns of patients and volunteers byanalysing samples – usually blood or urine – veryrapidly and on an unprecedented scale. This willhelp them to discover new ‘biomarkers’ to explainwhy one individual or population may be moresusceptible to a disease than another. Thisknowledge will aid scientists in finding new, saferand more targeted treatments.and will both enhance translational research andoffer the potential to significantly shorten drugdevelopment times.Translating research: To help reduce the costsof trials involved, the Government provided £36million for a new National Institute for HealthResearch (NIHR) Translational ResearchCollaboration in dementia. ong>Theong>se centres ofexcellence in dementia will work on commercialand non-commercial research to answerquestions about early diagnosis, patientstratification and novel therapeutics. This workshould lead to new proof of concept trials anddiscoveries, as we explore new approaches andvalidate existing ones.This collaboration provides unrivalled access to:■■■■■■NHS patients and their data with appropriateethical and confidentiality safeguards.A developing portfolio of research includingmarkers for the amyloid protein,neuroinflammation, blood flow andmetabolism. Using the latest clinical andresearch scanners, the study of diseasemodels together with leading edge researchdeveloping biomarkers in blood andcerebrospinal fluid is possible.Well-characterised dementia-related tissuesamples through links to the MRC supportedUK Brain Banks Network and supportivedisease-cohorts, which can also providespecimens of plasma, serum, urine, DNAand RNA.Imanova, a new state-of-the-art imaging centreestablished through a public-private partnershipco-owned by MRC and Kings College, UniversityCollege and Imperial College, London, wasopened in May 2012 and aims to become aninternationally renowned imaging centre andpartner of choice for industry and academia. Itscapability in PET and MRI brain scanning willoffer significant capability for studies of dementia,23


ong>Primeong> Minister’s ong>Challengeong> on DementiaSince the launch of the ong>Primeong> Minister’song>Challengeong>, a £2.1 million investment is beingmade through the UK’s Biomedical CatalystProgramme 31 towards a £3.3 million projectto translate UK imaging and cognitive testingtechnology, widely used in clinical trials, into adigital health care platform for early dementiadiagnosis. This will ultimately help to definestrategies for treatment and the prevention ofdementia. This collaborative project is led by UKSME’s involving academic researchers, the NHSand Alzheimer’s Society.A new £0.5 million study has been funded throughthe landmark MRC-AstraZeneca compoundcollaboration, which provides academicresearchers unprecedented access to 22chemical compounds to extend their possibleapplication into new disease areas. This studywill investigate the potential use of one suchcompound in controlling cerebral blood flow inAlzheimer’s disease with a view to identifying anew route for treatment.On 10 October 2012, the Government broughttogether representatives from across the UK’sresearch system to showcase this country’sspecialist dementia research and resources at amajor industry event. This event showed what ison offer in the UK and how a more coordinatedapproach from basic science, translationalresearch and clinical research in dementia canprovide an environment that gives the lifesciences industry important additionalopportunities to work in the UK to develop newapproaches to dementia.31 ong>Theong> Biomedical Catalyst is a £180 million programmeof public funding designed to deliver growth to the UKlife sciences sector, delivered jointly by the MRC and theTechnology Strategy Board24Implementing clinical research: ong>Theong> NIHR hasinvested £1 million to evaluate how quality of lifecan be improved through the impact of differentmemory assessment services and the withdrawalof prescribed anti-psychotic medication. We willthen be able to investigate the possibility of usingpatient reported outcome measure (PROMs) morefrequently in dementia care.ong>Theong> NIHR is also creating the right incentives toincrease the numbers of patients participatingin clinical research. NIHR DeNDRoN isimplementing new ways to integrate existingcapabilities of local NHS systems. Jointly withthe NIHR School for Social Care Research, NIHRDeNDRoN is also promoting research in carehomes, helping to increase recruitment todementia studies.Living well with dementia: to help people withdementia lead healthy, independent lives forlonger: ong>Theong> Economic and Social ResearchCouncil and the NIHR launched a call up to £13million for social science research on dementiaon the 9 July to fund national or internationalsocial science research in dementia that canmake a significant contribution to scientific,economic and social impact.What nextWe expect funding for dementia researchprovided by NIHR and the MRC to double overthe lifetime of this Government.This means funding will increase from £26.6million per annum in 2009/10 to an estimated£66.3 million per annum in 2014/15, includingfunding over £20 million of proposals under therecent NIHR ong>Theong>med Call on Dementia.ong>Theong> MRC spend on dementia andneurodegeneration research is currently around£34 million per annum and will increase by 10%to £37.5 million per annum by 2014/15 including:


Better research■■■■ong>Theong> MRC is providing £1 million towards a new£5 million COEN funding call for high-risk/highpay-off research to provide new mechanisticinsights in neurodegenerative disease, to belaunched this month. ong>Theong> NIHR TranslationalResearch Collaboration in dementia is alsobeing incorporated into this initiative to providefurther impact.ong>Theong> MRC is also involved in the EU JointProgramme on Neurodegenerative Diseases(JPND) initiative, for which it led thedevelopment of an EU-wide research strategy■■published earlier this year. ong>Theong> MRC iscontributing £2 million to support UK groups inthe forthcoming JPND call for research intothe risk factors that contribute to dementiasand other neurodegenerative disorders, to belaunched at the end of 2012.ong>Theong> MRC will continue to support the UK BrainBanks Network and four MRC brain banks thatcollect, archive and supply brain tissue toenable the study of disease mechanisms andthe development of potential drug treatments.2012 – A pivotal year in drug development?Alzheimer’s disease and dementia are different. We now know a great deal more about whatcauses Alzheimer’s disease and how we might treat it than dementia.However, most clinical trials of drug treatments against Alzheimer’s disease are giving usimportant clues even though they have been studied when the disease is well-established and itseffects on the brain are difficult to reverse.Significant research continues across all stages of the disease, but this year has brought forwardsome potentially interesting developments in treating early stage dementia in Alzheimer’s diseasein particular.Global trials of the Solanezumab drug by Lilly failed to show benefit for all dementia suffers, butappear to show some improvements in those with mild dementia, suggesting treatments could bedeveloped to help slow or prevent the disorder if caught early enough.Whilst the Janssen studies of the Bapineuzumab drug did not show any clear clinical benefits forpatients, the drugs did appear to affect the underlying biology of the disease by halting growth inharmful amyloid protein deposits, providing insights to support development of future treatments.Further phase III trials will report in April 2013.Drug companies continue to invest in further research, reflected in Roche’s decision to expandtesting of their Gantenerumab drug on more patients with pre-dementia. This will further build thebody of evidence.Lilly and Merck are starting global trials on therapies that block the betasecretase enzyme –involved in the build-up of the abnormal amyloid protein deposits - which may help preventdementia arising in patients with mild memory problems.UK scientists in industry and universities have made significant contributions to the understandingof the disease process that has led to these studies, and in the analysis of the results from thesestudies, provide some optimism for the future.25

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