Guidance for commissioners of dementia services

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This guide describes what a good quality, modern dementia service looks like. It has primarily been written for Clinical Commissioning Groups, local authorities, and Health and Wellbeing Boards. It will also be of interest to patients, carers and voluntary sector and provider organisations.

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Guidance for commissioners of dementia services

  1. 1. Guidance for commissioners of dementia services 1VolumeTwo:Practicalmental healthcommissioningGuidance for commissioners ofdementiaservicesJoint Commissioning Panelfor Mental Healthwww.jcpmh.info
  2. 2. Joint Commissioning Panelfor Mental HealthCo-chaired by:Membership:www.jcpmh.info
  3. 3. 2 Practical Mental Health CommissioningContentsExecutivesummaryIntroduction04What aredementia services?Why are dementiaservices importantto commissioners?05 06What do we knowabout currentdementia services?07What would agood dementiaservice look like?08Supporting thedelivery of themental healthstrategy andnational dementiastrategy16References18Other resourcesThis document was co-written by Ruth Eley and the JCP-MH editorial team and is basedpartly on the more detailed Dementia Commissioning Pack produced by the Departmentof Health in 2011 (http://dementia.dh.gov.uk/category/dementia-commissioning-pack).For a more detailed introduction to commissioning mental health, mental wellbeing andlearning disability services, Practical Mental Health Commissioning2can be downloadedat www.jcpmh.info
  4. 4. Guidance for commissioners of dementia services 3Executive summaryA comprehensive dementiacommissioning programmeincludes:• a strong public health componentthat focuses on prevention, earlyidentification of people with dementiaand targets high-risk groups such aspeople who fall, those who have astrong family history of dementia,and those with vascular risk factors.• assessment and early diagnosis servicesfor people with memory problems.This includes advice and support duringthe assessment phase and after diagnosisto assist with action planning for thefuture. It should include a treatmentservice that uses anti-Alzheimer’smedication (acetylcholinesteraseinhibitors) in accordance with NICErecommendations. The service shouldidentify those with mild cognitiveimpairment and arrange follow-up,given the risk of progression to dementia.• ongoing dementia support servicesbased in the community. Thesewill incorporate evidence-basedinterventions for patients and carers.They will also coordinate care forindividuals either by a member of theprimary mental health care team oran identified person in a voluntarysector organisation (linking with theprimary mental health care team).This could include a dementia advisoror a designated member of the healthor social care team to act as the caremanager if the person has more complexneeds. A range of community supportswill be required, including telecare,housing adaptations, carer supportand day opportunities.• specialist mental health care servicesfor patients with dementia who presentwith behaviours that challenge, patientswhose dementia is complicated bycomorbid functional mental healthproblems, and those with complexdiagnoses. These services will includea specialist service to manage patientswith extremely challenging behaviourswho need intensive support (includingassessment and interventions to managebehaviours that place the individual orothers at risk). This service will have astrong community focus, but will haveaccess to a limited number of inpatientbeds. Its patients will include thosedetained under the Mental Health Actor the Deprivation of Liberty Safeguards.Special attention should be given topeople living in care homes.• mental health liaison services based inacute general hospitals with specialistexpertise in dementia and delirium.These services will have links withphysical health services for the elderly,and with older people’s communitymental health teams.
  5. 5. The Joint Commissioning Panelfor Mental Health (JCP-MH)(www.jcpmh.info) is a newcollaboration co-chaired bythe Royal College of GeneralPractitioners and the RoyalCollege of Psychiatrists,which brings together otherorganisations and individualswith an interest in commissioningfor mental health and learningdisabilities. These include:• Service users and carers• Department of Health• Association of Directorsof Adult Social Services• NHS Confederation• Mind• Rethink Mental Illness• National Survivor User Network• National Involvement Partnership• Royal College of Nursing• Afiya Trust• British Psychological Society• Representatives of the EnglishStrategic Health Authorities• Mental Health Providers Forum• New Savoy Partnership• Representation fromSpecialised Commissioning• Healthcare FinancialManagement Association.IntroductionThe JCP-MH is part of the implementationarm of the government mental healthstrategy No Health without Mental Health.1The JCP-MH has two primary aims:• to bring together service users, carers,clinicians, commissioners, managers andothers to work towards values-basedcommissioning• to integrate scientific evidence, patientand carer experience and viewpoints andinnovative service evaluations in orderto produce the best possible advice oncommissioning the design and deliveryof high quality mental health, learningdisabilities and public mental health andwellbeing services.The JCP-MH:• has published Practical Mental HealthCommissioning,2a briefing on the keyvalues and principles for effective mentalhealth commissioning• provides practical guidance and adeveloping framework for mental healthcommissioning• will support commissioners of publicmental health to deliver the bestpossible outcomes for communityhealth and wellbeing• has published a series of short guidesdescribing ‘what good looks like’ invarious mental health service settings.Who is this guide for?The guide has primarilybeen written for ClinicalCommissioning Groups, localauthorities, and Health andWellbeing Boards. It will alsobe of interest to patients,carers and voluntary sectorand provider organisations.How will this guide help you?This guide has been writtenby a group of dementia careexperts, in consultation withpatients and carers.The content is primarily evidence-basedbut ideas deemed to be best practice byexpert consensus have also been included.By the end of this guide, readers should bemore familiar with the concept of dementiaservices and better equipped to understandwhat a good quality, modern dementiaservice looks like.This guide does not cover mentalhealth services for working age adults,functional mental health services for olderpeople, access to psychological therapiesor liaison psychiatry.Companion guides and informationon these issues are available atwww.jcpmh.info4 Practical Mental Health Commissioning
  6. 6. Guidance for commissioners of dementia services 5What are dementia services?Dementia services describea wide range of generic andspecialist mental health servicesthat meet the needs of peoplewith dementia and their carersin many settings:• in their own home• in acute general hospitals• in intermediate care• in sheltered and extra care housing• in residential care homes andnursing homes• in hospices.Dementia services aim to cover thewhole spectrum of needs (see Figure 1,taken from the 2009 National DementiaStrategy,3which describes the rangeof different components of dementiacommissioning and care).Spanning mild to severe symptoms,these services start with the identificationof possible memory or cognitive problems,include diagnosis, and continue throughto end of life care.Specialist dementia services support peopleduring particular phases of their illness,including at diagnosis, during a stay inan acute general hospital, or whenthey are experiencing behavioural orpsychosocial problems that requireexpertise beyond that normally providedby the primary care team.Raising awarenessand understandingEarly diagnosisand supportLiving wellwith dementia01 Public information campaign02 Memory services03 Information for people with dementia and carers04 Continuity of support for people with dementia and carers05 Peer support for people with dementia and carers06 Improved community personal support07 Implementing carers’ strategy for people with dementia08 Improved care in general hospitals09 Improved intermediate care for dementia010 Housing including telecare011 Improved care home care011 Improved end of life careFigure 1:Joint commissioning ofservices to enable peopleto live well with dementia3
  7. 7. 6 Practical Mental Health CommissioningWhy are dementia services important to commissioners?Dementia: an overviewDementia is a syndromecaused by a number of illnessesin which there is a progressivefunctional decline in memory,reasoning, communicationskills and the ability to carryout daily activities.Alongside this decline, individuals mayalso develop behavioural and psychologicalsymptoms such as depression, psychosis,aggression and wandering. These causeproblems in themselves, complicate care,and can occur at any stage of the illness.Although the risks of developing dementiaincrease with age, it is not an inevitablepart of ageing.There are several different types ofdementia:• Alzheimer’s disease (which accounts for60% of all cases in people aged over 65)• vascular dementia (15–20% of all casesof people aged over 65)• dementia with Lewy bodies (15–20%of all cases of people aged over 65)• frontotemporal dementia (morecommon among younger people).Between 30% and 70% of people withParkinson’s disease develop dementia,depending on duration of the conditionand age.How common is dementia?There are approximately750,000 people known to beliving with dementia in theUK, and this number isexpected to almost doublewithin 30 years.4Only about 40% of cases ofdementia are diagnosed. In the UK,dementia affects:• 1 in 6 people aged over 80• 1 in 25 people aged 70–79• 1 in 100 people aged 65–69• 1 in 1400 people aged 40–64.In the UK around 15,000 peopleaged under 65 have dementia. This isprobably an under-estimate as it isbased on referrals to services, and notall people will seek help early in thecourse of the disease.5An estimated 15,000 people fromblack and minority ethnic groups havedementia, and six per cent will have youngonset dementia, compared with two percent in the wider UK population.3People with learning disabilities are athigher risk of dementia. People withDown’s syndrome have an increasedgenetic risk. Higher risk of dementia isalso associated with stroke and someother neurological conditions.3Two thirds of people with dementia livein the community. The remaining third livein care homes and are usually at a moreadvanced stage of the illness.4What is the impact of dementia?Dementia is a long-termcondition. Some people livewith it for 10–12 years.On average people liveseven years after developingsymptoms, and two yearsafter diagnosis. This is becausemany people are not diagnoseduntil late in their illness.The average annual cost of caring fora person with late-onset dementia was£25,500 in 2007.4The average annual costper person with dementia cared for in thecommunity was £16,689 (mild dementia),£25,877 (moderate dementia) and£37,473 (severe dementia), and £31,296for those in care homes.4Identification and diagnosis of dementiaoften comes late in the illness, whenthe person needs more expensive careservices. Earlier interventions that wouldbe more cost-effective and could improvequality of life are not widely available.6
  8. 8. What do we know about current dementia services?There is no uniform modelThere is currently no uniform model fordementia services across England. Thevast majority of people with dementiaare looked after in primary care, and lessthan a quarter have contact with oldage psychiatry services at any time intheir illness.4This is because most peoplewith dementia live in their own home,supported by neighbours, families andmainstream services.Specialist services can helpGPs and primary care teams may needhelp and support to respond to challengingbehaviours, such as agitation oraggression, that affect some people withdementia. These behavioural challengescan affect anyone with dementia, whetherthey live at home or in residential ornursing care.Early interventions aremore cost-effectiveA National Audit Office report has foundthat the stigma attached to older peoplewith mental health problems, combinedwith poor quality data and lack of effectivejoint working across health and social care,means that services are not deliveringvalue for money to the taxpayer or topeople with dementia and their families.6In particular, the report found thatspending came too late, with toofew people receiving a diagnosis orbeing diagnosed early enough. Earlyinterventions that were known to becost-effective and that would haveimproved quality of life were not beingmade widely available. This resultedin higher spending at a later stage onnecessarily more expensive, becausethey were more intensive, services.6Although there are examples of goodand excellent services, people withdementia and their carers generally reportpoor experience of mainstream acutehospitals, home care and residential care.Dementia in care homesA Commission for Social Care Inspectionreport found that people with dementiamay be admitted to hospital when caringat home breaks down. They are more likelyto experience delays in discharge fromhospital, and in many cases are dischargedstraight from hospital to a care home.7,8A third of people with dementia live in carehomes and, according to Dementia UK,two thirds of people living in care homeshave dementia.4The Alzheimer’s Society has suggestedthat the primary task of the care homesector is to provide good quality care tothis group.9This report found that manyhomes were still not providing the one-to-one, person-centred care that peoplewith dementia need, and that access tosupport from external specialist serviceswas unacceptably variable.Care in the person’shome needs to improveA 2011 Alzheimer’s Society survey foundthat 50% of carers and people withdementia living at home said that theperson with dementia was not gettingenough support and care to meet theirneeds.10This was said to have seriousrepercussions, including avoidableadmissions to hospital and early entry tolong-term care. The majority (80%) ofcare workers surveyed said that beingable to care for the same person overa long period of time would help insupporting the person to stay in theirown home.Guidance for commissioners of dementia services 7
  9. 9. 8 Practical Mental Health CommissioningWhat would a good dementia service look like?Key principlesThe key principles underpinningdementia commissioning canbe summarised as follows.1 People want seamless servicesbetween health, social care, housingand other providers.2 Services should be commissionedand provided on the basis of need,not chronological age. However, aservice for an 80-year-old shouldnot be assumed to be appropriateto meet the needs of a 40-year-old.Services should be age-sensitive and,in particular, ensure that people withdementia, who may have complexneeds including physicalco-morbidities, receive the highestlevel of expert treatment, as wouldany other patient group.3 Different services are needed atdifferent times – from diagnosis, as thedisease progresses, through to end oflife care. These services include:• information and support –people should have the informationthey need to understand the signs andsymptoms of dementia, and knowwhere to go for help. They shouldreceive a diagnosis as early as possibleand know what treatments are bestfor them, what the implications of thediagnosis are, and how they will besupported to make good decisions.• help when needed – people living withdementia, and their carers/families,should feel confident that they havethe practical, emotional and financialsupport they need to lead as normal alife as possible throughout the course ofthe illness. They should be supported toget help when they need it.• living well – people with dementia andtheir carers should be supported in allaspects of the illness, so they can leadas full and active a life as possible.• end of life care – well before peopleenter the final stages of their life,they need to be supported to makedecisions that allow them and theirfamilies/carers to prepare for theirdeath. Their care should be well co-ordinated and planned well in advanceso that they are able to die where andin the way that they have chosen.4 Dementia should be seen aseverybody’s business. Most peoplewith dementia live at home, supportedby neighbours, communities andmainstream services. Mainstreamhealth and social care services shouldbe ‘dementia friendly’ and all staffshould have a basic awareness ofdementia and what it means.5 Care should be delivered in partnership– organisations and individuals shouldwork together to ensure that peoplewith dementia and their carers/familiesare fully involved in their health care,receive high quality care and achievethe best outcomes. Care should makebest use of skills, assets and resourcesin communities to enable people withdementia and their carers/families tolive well.6 Care should be personalised – servicesand support should be tailored to theneeds of the individual with dementia;people should have choice and controlabout their health care and support.Putting principles into practiceTo achieve this, commissioners will want toconsider commissioning a range of servicesto meet needs across the course of thedisease, including:• preventive public health interventions• dementia assessment, diagnosis andintervention services• home care and care home support• specialist mental health care• acute hospital liaison services• support for carers.8 Practical Mental Health Commissioning
  10. 10. Guidance for commissioners of dementia services 9Public health commissioningto prevent dementiaPreventing onset of dementiais important, given there iscurrently no cure. Consequently,commissioners shouldunderstand the potential riskfactors for dementia (theseinclude hypertension, heavyalcohol use and smoking),ensure primary care services areinvolved in preventative work,and recognise the role of publichealth in improving the earlyidentification of people withdementia in the community.InterventionsPreventative interventions thatcommissioners may wish to supportinclude:• cerebrovascular health promotion.Improved diet, lifestyle interventions andtake-up of health checks are likely toreduce dementia rates, given the currentevidence that up to 50% of dementiacases may have a vascular component(i.e. vascular or mixed dementia)• identification of people with dementiain the community. Although generalpopulation screening for dementia isnot recommended,11GPs should takethe opportunity to review patients thatthey see regularly for other conditions,such as heart disease, diabetes, asthmaand hypertension. Early identificationof mild cognitive impairment, andother symptoms that may indicateonset of dementia, will enable thepatient to receive an early diagnosisand appropriate advice and support.OutcomesTaking these steps can help achieveimproved outcomes, including:• reduced dementia risk as a consequenceof reduction in vascular disease• earlier access to support, advice andinformation, as a consequence of earlieridentification of dementia.Assessment, diagnosisand intervention servicesImproving diagnosis –including early diagnosis – isa gateway to more effectivedementia care and support.High quality assessment,diagnosis and interventionservices for people with mildand moderate dementiashould have the followingcharacteristics. They should:• make the diagnosis well• communicate the diagnosis well• provide appropriate treatment(medication, psychological andbehavioural), information, care andsupport following diagnosis.The objectives of a dementia assessment,diagnosis and intervention service are to:• promote and facilitate earlyidentification and referral and encourageeligible patients to attend for assessment• provide a high quality, accuratediagnosis of dementia that iscommunicated in a person-centred wayto the person with dementia and to theircarers and meets their individual needs• ensure that people with dementia andtheir carers are given information so theycan manage their care more effectivelyalong the pathway, understand how toaccess other help and make practicalarrangements for the future (such asarranging a Lasting Power of Attorney)• involve people with dementia andtheir carers in decisions about the careoptions available to them, including thedevelopment of individual care plans.Expected outcomes from such aservice are:• an increase in the proportion ofpeople with dementia receiving aformal diagnosis compared withthe local predicted prevalence (NICEquality standard 2 – see page 13 inthis guide)• an increase in the proportion of peoplewith dementia receiving a diagnosiswhen they are in the mild stages of theillness (NICE quality standards 1, 3, 4)• an increase in the number of patientsand carers who have a positiveexperience of health care services• reduced risk of crises later in the courseof the illness.Early identification and treatment can alsoextend the period of time that the personwith dementia can live and be cared for athome, if this is what they want.The cost savings of early diagnosis areestimated to be around £2,685 per persondiagnosed. These savings derive mainlyfrom extending the time that someone canbe cared for in the community, before theyneed to be admitted to a nursing home.4,6Referral criteriaAssessment, identification and diagnosisservices are designed to meet the needsof adults of all ages with symptoms ofmild to moderate dementia who have notalready received a diagnosis.GPs should refer patients with suspectedsymptoms of dementia that they believeare beginning to have an impact on theirday-to-day living.
  11. 11. 10 Practical Mental Health CommissioningWhat would a good dementia service look like? (continued)The service provider should acceptreferrals from GPs. The commissionershould consider whether direct referralsfrom other sources – for example, hospitalclinicians or adult social care services –or self-referrals may also be accepted.These services are not appropriate for:• patients with an existing diagnosisof dementia made by an appropriateclinician – they should continueto receive care and treatment fromthat team• patients who present with moreadvanced symptoms of dementia –they may be diagnosed and managedin primary care with or without the helpof the community mental health team• patients with severe or more complexbehavioural and psychological problemsor risk (including suicidal ideation) –they are likely to require direct referralto a community mental health team forolder people for more intensive supportand casework• patients with learning difficulties –they should have access to professionalswith an understanding of dementiain that client group (the level ofservice provided should be equivalentto that provided to other patientswith dementia)• patients with cognitive and otherimpairments arising from traumaticbrain injury.Further information on commissioningassessment, diagnosis and interventionservices, including a case for change and aservice specification, can be found in theDepartment of Health commissioning packat http://dementia.dh.gov.uk/category/dementia-commissioning-packPrescribing medicationThe service needs to be commissionedto deliver the current national guidanceon treatment with anti-dementia drugs.The capacity of the service should besufficient to initiate, monitor and maintainthe expected number of people withAlzheimer’s disease on appropriate anti-dementia medication.Expertise is required in the appropriateprescription of medication to older people,in particular because of the changesin physiology in older adults, physicalhealth co-morbidities and the consequentincreased risk of adverse drug interactionswhen the person is receiving treatment formultiple disorders.People with dementia may lack capacity toconsent to treatment. Prescribers need asound knowledge of the Mental CapacityAct and the legal requirements for treatingpeople who lack capacity.Prescribing anti-dementia medicationAccess to anti-dementia medicationshas historically been limited in the UK.However, more recent NICE guidance12has reinstated the recommended use ofdonepezil, galantamine and rivastigminefor managing mild as well as moderateAlzheimer’s disease, and memantineis now recommended for managingsome people with moderate and severeAlzheimer’s disease.Ensuring appropriate access to therecommended medications for treatingdementia is one of the key benefits ofassessment and early diagnosis. Thesemedications may improve cognitivefunctioning, reduce behaviours that carersfind challenging and, alongside otherearly interventions, improve independentliving and delay entry to long-term nursinghome care.13Rates of use of such medications in theUK are among the lowest in Europe.Commissioners should aim to achieve anincrease in prescription rates to the levelof the European average. They may alsowish to ask providers to monitor andreport patient response at six and 12months, and duration of treatment.Inappropriate use ofantipsychotic medicationA key national dementia policy goal isa reduction in the inappropriate use ofantipsychotic medication to treat olderpeople with dementia.14Of particularconcern has been the high level ofinappropriate antipsychotic use in carehomes. Antipsychotic medications arehelpful to treat psychosis and some casesof aggression and severe agitation.14However, antipsychotic medications havebeen commonly prescribed for behaviourssuch as restlessness, agitation and loss ofinhibition, where the evidence for theirbenefits is weak.A government commitment to reduceby two thirds by November 2011 theoverprescribing of antipsychotic drugs topeople with dementia has been supportedby a ‘call to action’ from the DementiaAction Alliance, and accompanyingguidance on managing behavioural andpsychological symptoms of dementia.15Anti-depressants, benzodiazepinesand night sedation may also be usedinappropriately for people with dementia.Follow-upCommissioners need to specify whetherpatients with mild cognitive impairmentshould be offered follow-up to monitorpossible cognitive decline and other signsof dementia so care can be planned, ifneeded, at an early stage. Follow-up couldbe undertaken in primary care or througha specialist dementia assessment, diagnosisand intervention service, which can alsoprovide in-reach and education services.
  12. 12. Commissioners should determine atwhat point responsibility for a patient’scare should be returned to primary care.Memory assessment services should becommissioned to give the diagnosis,provide information on sources of help andadvice, and arrange a follow-up meetingwith the patient and carer to draw up anagreed action plan for the future.Further information on commissioninga comprehensive memory assessmentservice can be found in the Departmentof Health commissioning pack athttp://dementia.dh.gov.uk/category/dementia-commissioning-packCommissioning supportat home, or in a care homeThe aim of supporting patientswith dementia (and theircarers) at home, or in a carehome, is to ensure theymaintain independence anda high quality of life wherethey have chosen to live.Patients and their carers should haverapid access to information and supportwhen needed. The objective of homecare and support is to work with primarycare services to prevent crises and reducethe need for specialist referrals, unplannedhospital admissions and residential careplacements.What needs to be commissioned?To maintain independence and a highquality of life in the community, patientsand their carers need access to mainstreamhealth and social care provision. This mayinclude the following:• information and advice• carer support• peer support• personalisation support• intermediate care• rehabilitation• home care• housing adaptations• assistive technology• extra care housing• respite care and short breaks• end of life care• dementia cafes.Commissioners will need to ensurethese services meet the needs of peoplewith dementia. Staff should receive basicawareness training on dementia andhow to support people with dementiaand their carers.Easy access to information and adviceis of crucial importance to people withdementia and their carers. Commissionersshould consider establishing the dementiaadviser role, as outlined in the NationalDementia Strategy,3to meet this need,particularly for people in the early stagesof the illness who do not meet theeligibility criteria for social care support.For people with more complex needs,a lead individual should be identifiedto facilitate rapid access to appropriateservices across the range of health andsocial care and to act as care co-ordinator.Good care may require access to specialistadvice from mental health services.OutcomesThe following outcomes should beachieved from high quality support athome and in care homes.I get the treatment andsupport that are best for mydementia and my life.Links to NICE quality standards 1, 4, 5, 7, 8;National Dementia Strategy objectives2, 6, 8, 9, 10, 11, 13, 18.I am treated with dignityand respect.Links to NICE quality standard 1;National Dementia Strategy objectives 1,13.I know what I can doto help myself and whoelse can help me.Links to NICE quality standards 1, 3, 4, 5;National Dementia Strategy objectives3, 4, 5, 6, 13.Those around me and lookingafter me are well supported.Links to NICE quality standards 3, 4, 6, 10;National Dementia Strategy objectives 3, 4, 5, 7.I can enjoy life.Links to NICE quality standards 3, 4; NationalDementia Strategy objectives 1, 4, 5, 6.I feel part of a communityand I’m inspired to givesomething back.Links to National Dementia Strategyobjectives 1, 5, 16.I am confident my end oflife wishes will be respected.I can expect a good death.Links to NICE quality standards 5, 9;National Dementia Strategy objectives 12,13.Further information on commissioningbetter care at home and in care homes,including a case for change, a selfassessment tool, dementia specific ‘inserts’for generic service contracts and a servicespecification for a specialist service tosupport primary care, can be found in theDepartment of Health’s commissioningpack at http://dementia.dh.gov.uk/category/dementia-commissioning-packGuidance for commissioners of dementia services 11
  13. 13. What would a good dementia service look like? (continued)Commissioning specialistmental health careThe primary care teammanaging patients withdementia will need access toadvice from specialist mentalhealth care services in thefollowing areas:• making complex diagnoses• managing patients with co-morbidfunctional mental health problems• managing patients with behavioursthat challenge• managing patients with extremelychallenging behaviours who are puttingthemselves and others at risk• using appropriate medications otherthan anti-dementia drugs to helpmanage a patient with dementia.This specialist care service needs tobe multi-professional, with input fromappropriate mental health trainedpractitioners, including communitypsychiatric nurses or Admiral Nurses,psychiatrists, psychologists, occupationaltherapists and social workers.Service aims and objectivesThe aim of this service is to support peoplein their own homes, other domesticsettings, or in care homes. To achieve this,it works alongside primary care and othercommunity services to maintain people inthe community, and manage symptomsand behaviours that might otherwise makeindependent living unviable.What needs to be commissioned?What is needed is a multi-professionalcommunity mental health service,integrated within a broader communitymental health team for old age psychiatry.The service will provide expert advice andtreatment in the management of patientsin their own homes or appropriate caresettings, and offer specialist advice on theprescription of antipsychotics and othermedication for people with dementia.The service will include care home liaisonon a pro-active, in-reach basis to preventinappropriate admissions to hospital.As well as interventions for individualreferrals, the service will provide education,training and coaching to care home staffto enable them to recognise, prevent andmanage challenging behaviours moreeffectively. The team should also workclosely with the hospital liaison service tofacilitate rapid and smooth discharge fromhospital in-patient beds. There is a clearevidence base for such services.The service will ensure that carers areappropriately assessed and have accessto the treatment and support they need.The team will provide specialist support toprimary care.Further information about commissioninga specialist community mental healthservice to support primary care, includinga case for change, costing tool andservice specification, can be found in theDepartment of Health’s commissioningpack at http://dementia.dh.gov.uk/category/dementia-commissioning-packCommissioning mental healthliaison services for dementiain acute hospitalsGood dementia care requiresthe commissioning of an acutehospital mental health liaisonservice. This is because:• up to 70% of hospital beds areoccupied by older people3• up to half of these may be peoplewith cognitive impairment, includingdementia and delirium5• when people with dementia areadmitted for treatment of otherconditions, they stay in hospital longerthan people with the same conditionbut without dementia.Acute mental health liaisonservices provide:• support and advice on assessmentand diagnosis• support and advice on care planningand behaviour management• access to other available specialistsupports• support to staff training andorganisational development.Hospital liaison services cannot beexpected to deal with all the challengesassociated with managing peoplewith dementia appropriately in theacute general hospital setting.Commissioners should satisfy themselvesthat specifications for acute hospitalcare take account of the needs of peoplewith dementia.The Department of Health commissioningpack (see opposite) includes a templatefor commissioners to invite acute trusts tosubmit an action plan to improve dementiacare in their hospitals in three areas. Oneof these must be workforce developmentand training but the others could benutrition, signage and the physicalenvironment, for example. This approachlends itself to incentive payments throughCommissioning for Quality and Innovation(CQUIN) schemes to reward successfulimplementation of service improvements.OutcomesOutcomes from commissioning effectivemental health liaison services include:• reductions in unplanned admissions andre-admissions to acute and psychiatrichospitals from home/care homes12 Practical Mental Health Commissioning
  14. 14. Guidance for commissioners of dementia services 13• reduction in antipsychotic medicationuse for people with dementia in carehomes/other residential settings• increase in the number of patients andcarers who have a positive experience ofhospital care, and fewer complaints• reduction in the number of patientsdischarged directly from hospital to carehomes as a new place of residence.Further information on commissioninga mental health liaison service, includinga case for change, a costing tool anda service specification, can be foundin the Department of Healthcommissioning pack, available athttp://dementia.dh.gov.uk/category/dementia-commissioning-pack.Supporting carersAll commissioned servicesneed specific guidance onthe support to be providedfor carers.Psycho-educational interventions forfamily caregivers can result in significantreductions in caregiver burden andimprovements in depression, subjectivemental wellbeing and perceivedcaregiver satisfaction.16However, not allinterventions achieve the same outcomes:respite and day care have been foundto reduce caregiver depression; supportgroups increase caregiver coping capacity,but have no effect on depression.16Earlyintervention for caregivers can improvewellbeing and reduce mental healthproblems, with associated benefits forcapacity to care. The dementia adviserrole (as recommended in the NationalDementia Strategy3) could ensure easyaccess to information and advice for carersof people with dementia. The Departmentof Health has commissioned an evaluationof 22 pilot projects testing out the role,which will report in autumn 2012.Key standards and outcomesThere are a number of waysto describe the standards andoutcomes of good qualitydementia interventions andservices. Some are listed below.NICE quality standards for dementia17Quality standards are specific statementsdefining what high quality care ‘looks like’.NICE published ten quality standards fordementia in June 2010.1 People with dementia receive carefrom staff appropriately trained indementia care.2 People with suspected dementia arereferred to a memory assessmentservice specialising in the diagnosis andinitial management of dementia.3 People newly diagnosed with dementiaand/or their carers receive writtenand verbal information about theircondition, treatment and the supportoptions in their local area.4 People with dementia have anassessment and an ongoingpersonalised care plan across healthand social care that identifies a namedcoordinator and addresses need.5 People with dementia, while theyhave capacity, have the opportunityto discuss and make decisions, withtheir carer/s, about the use of advancestatements, advance decisions to refusetreatment, Lasting Power of Attorneyand preferred care priorities.6 Carers of people with dementia areoffered an assessment of emotional,psychological and social needs and, ifaccepted, receive tailored interventionsidentified by a care plan.7 People with dementia who developnon-cognitive symptoms causingsignificant distress, or who developbehaviour that challenges, are offeredan assessment at an early opportunityto establish generating/aggravatingfactors. Interventions to improvebehaviour or distress should berecorded in their care plan.8 People with suspected or knowndementia using acute and generalhospital inpatient services oremergency departments have accessto a liaison service that specialises inthe diagnosis and management ofdementia and older people’s mentalhealth.9 People in the later stages of dementiaare assessed by primary care teams toidentify and plan their palliative careneeds.10 Carers of people with dementia haveaccess to a comprehensive range ofrespite/short-break services that meetthe needs of both the carer and theperson with dementia.www.nice.org.uk/guidance/qualitystandards/dementia/dementiaqualitystandard.jsp
  15. 15. 14 Practical Mental Health CommissioningWhat would a good dementia service look like? (continued)National Dementia Strategyquality outcomes14Building on the 2009 National DementiaStrategy for England, nine quality outcomemeasures were published in 2010. Theseare linked to the NICE quality standardsand cover four areas:• improved awareness• earlier diagnosis• higher quality of care• reduced use of anti-psychoticmedication.I was diagnosed early.Links to NICE quality standards 2, 3;Dementia Strategy objectives 1, 2.I understand, so I make gooddecisions and provide forfuture decision making.Links to NICE quality standards 3, 5;Dementia Strategy objectives 3, 4, 5.I get the treatment andsupport which are best formy dementia, and my life.Links to NICE quality standards1, 4, 5, 7, 8; Dementia Strategy objectives2, 6, 8, 9, 10, 11, 13, 18.I am treated with dignityand respect.Links to NICE quality standard 1;Dementia Strategy objectives 1,13.I know what I can do tohelp myself and who elsecan help me.Links to NICE quality standards 1, 3, 4, 5;Dementia Strategy objectives 3, 4, 5, 6, 13.Those around me and lookingafter me are well supported.Links to NICE quality standards 3, 4, 6, 10;Dementia Strategy objectives 3, 4, 5, 7.I can enjoy life.Links to NICE quality standards 3, 4;Dementia Strategy objectives 1, 4, 5, 6.I feel part of a communityand I’m inspired to givesomething back.Links to Dementia Strategy objectives 1, 5, 16.I am confident my end oflife wishes will be respected.I can expect a good death.Links to NICE quality standards 5, 9; DementiaStrategy objectives 12, 13.www.dh.gov.uk/en/Publicationsandstatistics/Publications/PublicationsPolicyAndGuidance/DH_119827The Quality OutcomesFramework (QOF)Introduced in 2004, the QOF is avoluntary incentive scheme for GPpractices in the UK that rewards them forhow well they care for patients. The QOFcomprises groups of indicators againstwhich practices score points according totheir levels of achievement.In simple terms, the higher the score,the higher the financial reward for thepractice. Dementia has three QOFindicators:1 the GP practice can produce a registerof patients diagnosed with dementia2 the percentage of patients diagnosedwith dementia on the register whosecare has been reviewed in the last15 months3 the percentage of patients with anew diagnosis of dementia (from April2011) who have received specifiedphysical tests in the six months beforeor after diagnosis.Once patients are on the QOF dementiaregister, GPs and the wider primary healthcare team have an opportunity to helpthem live well by encouraging healthyand active lifestyles, providing advice andinformation, and offering regular healthchecks. As needs change, the primaryhealth care team can plan with the personwith dementia and their carers/family howtheir care will be co-ordinated.
  16. 16. Primary care teams should ensure allpractice staff (including administrativestaff) receive basic dementia awarenesstraining. They should annually reviewthe numbers of people receiving adementia diagnosis and compare thiswith expected prevalence rates for theirarea, and consider how to identify patientsat highest risk of developing dementiawho may be attending clinics for treatmentfor other conditions (e.g. diabetes careor vascular health).http://www.bma.org.uk/images/qofguidancefourthversion2011_v2_tcm41-205262.pdfDementia care standardsfor acute general hospitalsThe Royal College of Psychiatrists CollegeCentre for Quality Improvement (CCQI),through its National Audit of Dementia,has produced a set of standards forhospitals providing general acute inpatientservices to measure aspects of caredelivery known to impact on peoplewith dementia admitted to hospital.These are as follows.• all people with dementia receive acomprehensive assessment that includesassessment of their mental health needs.• people with dementia in hospital canaccess assessment and treatment from aspecialist psychiatric liaison service withexpertise in responding to their needs• people with dementia receive care that istailored to their needs and takes accountof the impact of the condition• the hospital plans, provides and reviewsservices to meet the needs of peoplewith dementia and their carers• people with dementia are supportedby a discharge planning process thattakes account of individual needs andthe impact of the condition• resources are in place to support theneeds of people with dementia inhospital• people with dementia are cared forby staff who are supported to identifyand respond to individual needs• people with dementia are cared for inan environment that is adaptable to theirneeds and preferences• people with dementia and their carersare listened to and treated with respect,and provided with the information theyneed about care, support and discharge.www.rcpsych.ac.uk/quality/nationalclinicalaudits/dementia/nationalauditofdementia.aspxDementia care standardsfor memory servicesThe CCQI, through its Memory ServicesNational Accreditation Programme,publishes standards to assure/improve thequality of memory services for people withmemory problems/dementia and theircarers. The standards are as follows:• any clinic run by the memory service isaccommodated in an environment thatis appropriate to the needs of peoplewith memory problems/dementia• the memory service provides timelyaccess to assessment and diagnosis• the memory service ensures that adiagnosis of dementia is made only aftera comprehensive and holistic assessmentof the person’s needs by appropriateprofessionals, either within the serviceor elsewhere• assessment outcomes are communicatedto all relevant parties in a timely manner• additional tests/investigations arein accordance with individual andclinical need• the service is able to offer appropriatesupport, advice and informationto people with memory problems/dementia and their carers at the time ofassessment and diagnosis• the memory service ensures each personwith memory problems/dementia hasa care plan• professionals in the memory serviceensure that the person (and their carer)is able to access a range of post-diagnostic supports and interventions• the service ensures each personwith memory problems/dementia isfollowed up.www.rcpsych.ac.uk/quality/qualityandaccreditation/memoryservices/memoryservicesaccreditation.aspxDementia care CQUINA nationally mandated CQUIN waspublished in 2012 which aimed toimprove awareness and diagnosisof dementia, using risk assessment,in an acute hospital setting. Theseindicators covered dementiascreening, dementia risk assessment,and referral for specialist diagnosis.18Guidance for commissioners of dementia services 15
  17. 17. Supporting the delivery of the mental health strategy1and National Dementia Strategy3The JCP-MH believes thatgood dementia commissioning,as described in this guide,will support the delivery ofthe shared objectives set outin the mental health strategyfor England.1Shared objective 1:More people will havegood mental health.Prevention, early identification,diagnosis and treatment of people withdementia will increase the number ofpeople receiving appropriate care andsupport and delay the development ofmore severe symptoms in more people.Shared objective 2:More people with mentalhealth problems will recover.A specialist dementia programmecan enable patients to retain as muchfunctioning as possible will help themto continue to live as independently aspossible for as long as possible throughimproved memory, communication andother daily living skills.Shared objective 3:More people with mentalhealth problems will havegood physical health.Commissioning can ensure patients’physical health needs are taken intoaccount in mental health settings, andtheir mental health needs are addressed inphysical health care settings.Shared objective 4:More people will have a positiveexperience of care and support.Addressing both physical and mentalhealth needs together will ensure patientsreceive a more holistic and positiveexperience of care.Shared objective 5:Fewer people will sufferavoidable harm.Good dementia commissioning will addressthe safety of patients with dementia, whoare at high risk of harm from, for example,falls.Shared objective 6:Fewer people will experiencestigma and discrimination.Everyone with dementia – not just theminority – should be treated with dignityand respect. People with dementia has aright to a quick diagnosis and a high levelof care, support and treatment from healthprofessionals.16 Practical Mental Health CommissioningThe JCP-MH also stronglybelieves that good dementiacommissioning as describedin this guide will support thedelivery of the NationalDementia Strategy.2
  18. 18. Guidance for commissioners of dementia services 17Dementia Expert Reference Group Members• Ruth Eley (ERG Chair)Co-author of Department of HealthDementia Commissioning Pack• David AndersonConsultant PsychiatristMersey Care NHS Trust• Martin AnsellConsultant Psychiatrist2gether NHS Foundation Trust• Andy BarkerConsultant PsychiatristSouthern Health NHS Trust• Donald BrechinProfessional Head of Psychologyand Therapies ServicesLeeds Partnership NHS FoundationTrust• Jonathan CampionConsultant PsychiatristSouth London and MaudsleyNHS Foundation Trust• Chris FitchResearch and Policy FellowRoyal College of Psychiatrists• Hilda HayoDeputy Director of NursingNorthamptonshire HealthcareNHS Foundation Trust• U Hla HtayCarer representative• Kieron MurphyDirector of DeliveryJoint Commissioning Panelfor Mental Health• Kate SchneiderProgramme Lead(Dementia and Mental Health)South West Strategic Health Authority• Marine StoffellsConsultant PsychiatristSt Andrews HealthcareDevelopment processThis guide has been written by a groupof dementia care experts, in consultationwith patients and carers. Each memberof the Joint Commissioning Panel forMental Health received drafts of the guidefor review and revision, and advice wassought from external partner organisationsand individual experts. Final revisions tothe guide were made by the Chair of theExpert Reference Group in collaborationwith the JCP’s Editorial Board (comprisedof the two co-chairs of the JCP-MH,one user representative, one carerrepresentative, and technical and projectmanagement support staff).
  19. 19. 18 Practical Mental Health CommissioningReferences1 HM Government (2011). No healthwithout mental health: a cross-government mental health outcomesstrategy for people of all ages.London: Department of Health.2 Bennett, A., Appleton, S., Jackson, C.(eds.) (2011). Practical mental healthcommissioning. London: JCP-MH.www.jcpmh.info3 Department of Health (2009). Livingwell with dementia: a national dementiastrategy. London: Department of Health.4 Dementia UK (2007). Dementia UK:a report into the prevalence and cost ofdementia prepared by the Personal SocialServices Research Unit (PSSRU) at theLondon School of Economics and theInstitute of Psychiatry at King’s CollegeLondon, for the Alzheimer’s Society.London: Alzheimer’s Society.5 Department of Health (2011). Casefor change: community-based servicesfor people living with dementia. London:Department of Health.6 National Audit Office (2007). Improvingservices and support for people withdementia. London: TSO.7 Commission for Social Care Inspection(2004). Leaving hospital – the price ofdelays. London: Commission for SocialCare Inspection.8 Commission for Social Care Inspection(2005) Leaving hospital – revisited.London: Commission for Social CareInspection.9 Alzheimer’s Society (2007). Homefrom home: a report highlightingopportunities for improving standardsof dementia care in care homes. London:Alzheimer’s Society.10 Alzheimer’s Society (2011). Support.Stay. Save: care and support of peoplewith dementia in their own homes.London: Alzheimer’s Society.11 National Collaborating Centre forMental Health (2007). A NICE–SCIEguideline on supporting people withdementia and their carers in health andsocial care. Leicester: British PsychologicalSociety/ Gaskell.12 National Institute for Health andClinical Excellence (2011). Donepezil,galantamine, rivastigmine and memantinefor the treatment of Alzheimer’s disease.Review of NICE technology appraisalguidance 111. London: NICE.13 Department of Health (2009). Impactassessment of National Dementia Strategy.London: Department of Health.14 Department of Health (2010). Qualityoutcomes for people with dementia:building on the work of the NationalDementia Strategy. London: Departmentof Health.15 Dementia Action Alliance (2011). Theright prescription: a call to action on theuse of antipsychotic drugs for peoplewith dementia. London: Dementia ActionAlliance.16 Sorenson, S., Pinquart, M., Duberstein,P. (2002). How effective are interventionswith caregivers? an updated meta-analysis.The Gerontologist 42(3), pp. 356–72.17 NICE (2010). Dementia qualitystandards. NICE ImplementationDirectorate Quality StandardsProgramme. London: NICE. www.nice.org.uk/guidance/qualitystandards/dementia/dementiaqualitystandard.jsp?domedia=1&mid=7EF3AFC7-19B9-E0B5-D4504471A4FD758E18 Department of Health. (2011).The Operating Framework for the NHSin England 2012/13. London: Departmentof Health.
  20. 20. Guidance for commissioners of dementia services 21A large print version of this document is available fromwww.jcpmh.infoPublished February 2013Produced by Raffertys

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