London Dementia Needs Assessment 2011

Planning dementia services and deliveringQIPP for London clusters

Report 2

Support for commissioners onpriority setting, cost-effectiveness,making changes and measuringprogress

http://www.acropdf.com

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Contents

Page

Introduction 2

Acknow ledgements 2

1.1 Assessing needs and setting prior ities

1.1.1 Introduction 31.1.2 Joint strategic needs assessment 31.1.3 Developing a JSNA for dementia 31.1.4 Dementia needs assessment data 51.1.5 Setting local priorit ies 7

1.2 Cost effectiveness of dementia services

1.2.1 Introduction 101.2.2 Cost of dementia 101.2.3 Key concepts in cost effectiveness 111.2.4 Cost effectiveness evidence 12

1.3 Making change and measuring progress

1.3.1 Introduction 191.3.2 Levers for change 191.3.3 Indicators for measuring progress 21

References 26

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Introduction

This information pack is designed to support London commissioners, providers and otherpartners in improving care for people affected by dementia.

Part One provides information of interest to all clusters in London. It brings key documentsand other material together in one place and includes a range of resources designed to helpin planning dementia care. The structure follow s a sequence that starts with assessingneeds, and ends w ith monitoring progress w ith dementia services. The pack complementsthe recent Department of Health Dementia Commissioning Pack w hich has more detailedinformation for commissioners on some specif ic elements such as costs and servicespecif ications.

The pack begins by looking at the early stages of the planning process – needs assessmentand priority setting (section 1.1). It outlines the latest thinking on the process and content ofjoint strategic needs assessment (JSNA) and tailors this to dementia. It addresses achecklist of questions that can be used in developing a JSNA and includes suggested datafor inclusion. Much of these data can be found in the specif ic cluster data packs that formPart Tw o of this pack. JSNA information is not an end in itself, how ever, and section 1.1goes on to consider how needs assessment and other evidence about dementia can beused in a priority-setting process for strategy development and for commissioning.

Section 1.2 then looks at evidence of cost effectiveness. This can be a complex field andevidence can sometimes be interpreted in different w ays. The report therefore sets out themost frequently cited evidence in one place and tr ies to interpret this in a w ay that isunbiased and helpful to commissioners faced w ith diff icult decisions. It discusses the typesof costs and benefits that may be involved and includes sometimes neglected issues such astimescales and perspectives.

Finally, having addressed evidence and priorities, section 1.3 highlights w ays in w hichcommissioners and others can use a range of different levers to improve services. This goeswider than the commissioning of specif ic dementia services (which are well covered in theDH Commissioning Pack) and recognises the influence that commissioners and otherleaders have w ithin their communit ies. The section finishes w ith a menu of indicators thathelp to assess the degree to w hich services have improved over time. These data form partof the bigger picture that should include w ider evidence from service users and their carers.

We hope the pack is useful – it is intended to be a practical resource that can be adapted asnecessary to suit local circumstances.

Acknow ledgements

This report w as produced by Paul Brotherton, Independent consultant in public health, onbehalf of NHS London. The author w ould like to thank Geraldine Strathdee (AssociateMedical Director for Mental Health, NHS London) and Jen Watt (Project Manager, NHSLondon) for comments and advice throughout, and Meera Sookee (Economist, Departmentof Health) for comments on cost effectiveness.

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Section 1.1 Assessing needs and setting priorities

1.1.1 IntroductionThis section looks at the first stage of the commissioning process – assessing localpopulation needs. It outlines the process of joint strategic needs assessment (JSNA) andthen suggests w ays in which specif ic information on dementia can be used. Finally, it looksat priority-setting including w ays in w hich evidence can be used to guide local strategy andcommissioning plans.

1.1.2 Joint strategic needs assessment (JSNA)JSNA is now a w ell-established process bringing health, local authority and other partnerstogether to gather evidence of need and to help guide local priorit ies. The NHS reforms haveconfirmed that JSNA w ill continue to have an important role albeit in a different context.Responsibility for JSNA now lies w ith Health and Wellbeing Boards (HWBs) w ith the crucialinvolvement of Clinical Commissioning Groups. The closer integration of health and localgovernment w ill particularly suit dementia as it is a condition that so clearly cuts acrosstraditional organisational boundaries.

A recent toolkit i sets out seven quality themes for JSNA:• Learn from the past – review your JSNA and strategic partnerships to date• Agree the scope and mandate for the JSNA• Know your audience – agree the users of your JSNA and w hat the need from the

process• Build trust and agree a shared process of strategic priority setting through your JSNA

and Joint Health and Wellbeing Strategy (JHWS)• Match form to function and specify your JSNA products• Secure the capacity, skills, data and know ledge needed to deliver your JSNA• Agree governance and consolidate your vision into a clear specif ication.

Each quality theme is accompanied by a series of questions that Health and WellbeingBoards (HWBs) can consider before embarking on JSNA and some good practice casestudies. The quality theme questions are used in the next section to support the process ofdeveloping a JSNA for dementia.

1.1.3 Developing a JSNA for dementiaHealth and Wellbeing Boards may w ant to develop a specif ic JSNA for dementia to reflect itssubstantial and grow ing effect on population health and w ellbeing. Alternatively, dementiamight be included in a broader JSNA dedicated older people as a specif ic population groupor perhaps to a themed JSNA on the mental health and w ellbeing of adults generally.Whatever option is chosen, HWBs w ill w ant to ensure that information on dementia is of highquality and is directly relevant to priority-setting and commissioning processes.

Figure 1 sets out some of the issues that may need to be considered in developing a highquality JSNA for dementia. Please note that this is not exhaustive but serves to illustratesome of the issues w orthy of consideration – see the JSNA toolkit for other ideas.

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Figure 1. Some issues to consider in developing a JSNA for dementia

Quality theme IssuesLearning from the past Previous needs asse ssments may have covered dementia in depth and thus

provide a firm platform to build on. Others may have included it as one ofmany other topics and not added much more understanding.

It is also important to consider the impact of previous dementia needsassessments – did they contain the right information in a way that supportedpriority-setting? Were they an inclusive process and did they have a highenough profile with decision-makers?

Scope and mandate Should the dementia needs asse ssment address wider issues affectingpeople with dementia (such as housing, transport etc) or is it more limited tohealth and social care services?

To what extent should the dementia JSNA seek to drive priorities and tohave a major impact on joint strategy and commissioning, or is it ‘forinformation’?

Know your audience Who is the dementia JSNA designed for? Is it primarily for local agenciesrepresented on the Health and Wellbeing Board, or is it for a wider audienceincluding a range of voluntary sector and independent sector organisations?The JSNA process may be an opportunity to bring together people who donot normally sit round the same table.

Is the JSNA also aimed at people with dementia and their carers? Are theyinvolved in the process and have a say in the content and design?

Trust and prioritysetting

With resources very tight and subject to increasing pressure, how can theJSNA address priority setting? Is it there to fly the flag for dementia or can itsay which specific interventions are good value for money and which arenot? Can the priority-setting process be seen as fair and can it addresscomplex issues such as quality of life as well as more traditional measuressuch as life expectancy? What role does the quality of life of carers have inpriority-setting?

Match form to function Bearing in mind the purpose of the JSNA locally, what form should it take?Does there need to be a ‘report’ as such or would web-based data suffice?Is the format relevant to the audience for the JSNA? How often does it needto be updated?

Capacity, skil ls, dataand knowledge

Are the right people who know about dementia round the table and takingpart in the JSNA? How can different types of data (such as epidemiologicalstatistics and the views of people with dementia) be brought together to tell ameaningful story?

Are there particular data or expertise gaps that need to be filled tocomplement existing resources?

Governance andspecification

Who is responsible for the dementia JSNA, in terms of both governance anddelivery? Is it led by analysts or is there a wider group that sets theparameters and drives the overall process? Are editorial roles and sign-offresponsibilities clear?

There are clearly many agencies and individuals w ith a role to play in a dementia JSNA.Some key partners for involvement might include:

• Health and social care commissioners• General practit ioners and their teams• Public health• Pharmaceutical advisors• Health and local author ity information analysts• Voluntary sector organisations (eg Alzheimer’s Society, Age UK)• Acute, community and mental health providers

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• Local government departments such as Housing• Independent sector providers (eg care homes)

1.1.4 Dementia needs assessment dataJSNAs can take a variety of different forms but a recent national publication ii suggested thatthe content of JSNA could be arranged into six domains. These are arranged in a broad‘pathw ay’ w hich begins w ith basic population data (domain one) and leads tow ards prioritiesfor action (domain six). They are accompanied by tw o common themes (inequalit ies andlocal views) which should run through the w hole JSNA document. This is illustrated in Figure2.

Figure 2. Six domains and tw o themes of joint strategic needs assessment

Source: Local Government Improvement and Development ‘Joint strategic needs asse ssment: datainventory’ LGID 2011.

JSNA information should have a particular purpose and should not be an end in itself. In thedata inventory each theme begins w ith key questions that a HWB might w ant to ask – thedata then helps to answ er the questions and thus build up a more in depth picture to supportpriority-setting.

The follow ing sets out some of the core evidence that could be included in a dementia JSNA.Again this is not meant to be exhaustive but gives an indication of the type of information thatshould be considered.

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Figure 3. Examples of key data relevant to a dementia JSNA

JSNA section Examples of relev ant information1. Population • Local authority and small area population by age group and gender

• GP practice and clinical commissioning group populations by agegroup and gender

• Population trends and projections• Types of households including older people living alone• Population by ethnic groups, particularly older people• Numbers of older people in groups that may have specific needs (eg

homeless people, offenders, people with disabilities, Gypsies &Travellers, carers)

2. Social and placewellbeing

• Deprivation levels, including index of poverty affecting older people,by small geographical area

• People living in fuel poverty• People on means tested benefits• Housing tenure• People living in residential and nursing care homes• People in Extra Care housing

3. Lifestyles andhealthimprovement

• Smoking prevalence and quit rates• Hypertension register data and prescribing rates• Flu immunisation rates• Uptake of NHS health checks (age 40-74)• People screened for alcohol use• People screened for nutritional status

4. Health andwellbeing status

• Estimated prevalence of early and late onset dementia by localityand GP practice

• Estimated incidence of early and late onset dementia• Recorded prevalence of dementia by GP practice• Estimated numbers of people with dementia by type• Estimated number of people with dementia by severity• Estimated number of people with dementia by care interval• Projections for people with dementia• Healthy life expectancy at age 65• Excess winter deaths• Numbers of people with specific disabil ities by age group• Incidence and prevalence of cardiovascular disease

5. Service utilisation • People with dementia reviewed in primary care• Prescriptions and spending for dementia related drugs• New clients with social care assessments by type/ age etc• Clients receiving social care in the community by type/ age etc• Carers receiving needs asse ssment or review, and receiving support• People with dementia receiving self-directed support/personal

budgets• People with dementia supported to live in care homes• Number of care home places available locally• People admitted to hospital with dementia recorded as a main

diagnosis, and lengths of stay• People admitted to hospital with dementia recorded as a second or

other diagnosis, and lengths of stay• Reasons for hospital admission for the above (including preventable

admissions)• People with dementia dying in hospital• Activity levels for specific local community services used by people

with dementia including memory services, community teams, daycare etc.

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6. Priorities for action See separate section below

Looking at how the tw o common themes can be incorporated into a dementia JSNA:• Local view s can be incorporated by involving representatives of people w ith dementia

and their carers in the overall JSNA process (including at the early design stages), byconsulting w ith people through a range of available mechanisms, and through w iderbodies such as HealthWatch.

• Inequalities can be explored by w here possible breaking information dow n intosmaller components (eg different localities) and investigating any signif icantdifferences. Equity audit is a useful tool for analysing service utilisation by factorssuch as ethnic group to detect w hether some groups are benefiting more than others.The level of ethnic recording in health and social care services can itself be a usefulindicator of the extent to w hich inequalities are given priority.

1.1.5 Setting local priorit iesJSNA can guide local priority setting at tw o key stages, f irstly to highlight overall prioritytopics for inclusion in the Health and Wellbeing Strategy and secondly to identify some of thekey interventions that the strategy and local commissioning plans should take forw ard. Thissection looks at the w ay in w hich dementia information can feed into this challengingprocess.

Developing a shortlist of priority topics for the local Health and Wellbeing Strategy mightinclude using criteria such as:

• The numbers of people affected by the issue• The effect on people’s health and w ellbeing• Projected future position if no action taken• Scope for improvement• Resource impact• Contribution to inequalities• Local view s

Different areas w ill have different ways of incorporating these (and potentially other) criteriainto a system for selecting overall priorit ies for the Health and Wellbeing Strategy. Someways in w hich dementia JSNA information can be used against these criteria is set out inFigure 4 below .

Figure 4. Notes on dementia in relation to key overall priority setting criteria.

Criteria Notes on dementiaNumbers of peopleaffected

About 1% of the total population have dementia and this will varyaccording to the age structure of the population. Details will be found inthe population and health and wellbeing/epidemiology sections of theJSNA

Effect on people’shealth and wellbeing

Dementia is a progressive condition and over 80% of people with thecondition will have substantial or moderate care needs (ie at least dailycare). Dementia also has an impact on life expectancy. The effect onquality of life and health of carers should also be considered.

Projected futureposition if no actiontaken

The numbers of people with dementia is growing and is forecast to doublenationally over a 30 year period. The prevalence of some dementia(vascular) can be reduced through preventative measures. The JSNAshould contain detailed projections for the local area.

Scope forimprovement

While most dementia cannot be avoided there is scope to improve qualityor life and health outcomes through early detection and intervention (seebelow)

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Comparative data can be used to assess the area’s relative positionagainst other areas, but it may be more important to match localperformance against national guidance and best practice guidelines toidentify the true scope for improvement.

Resource impact Dementia costs £15.9 billion per annum in England alone and the totaleconomic cost is greater than CHD, stroke and cancer combinediii. MentalHealth is the biggest spend category in the Department of Health’sprogramme budgeting data.

Local NHS and social care data can be used to build up a picture ofresource use within a local authority population, but the additional costsborne by voluntary sector agencies, users and carers and others alsoneed to be considered.

Contribution toinequalities

Although the prevalence of dementia is not thought to vary greatlybetween different population groups the amount of support and quality ofcare received can be very heavily affected by income. The ability to buyadditional care or to use higher cost care homes can affect quality of life.Equality impact asse ssments and equity audits can shed further light onthis.

Local views People with dementia and their carers may have had a say in the JSNAthrough a range of methods while broader representative groups such asHealthWatch will be in a position to give their views on the relative priorityof dementia compared to other topics. Care should be taken to ensurethat ‘hidden’ voices are heard in this process.

After selecting overall priorities there needs to be a process of deciding on specif icinvestments and/or disinvestments to help ensure that services on the ground best meetlocal needs. Key factors might include:

• More detailed information on current and projected service requirements• Evidence of effectiveness and cost-effectiveness• Modelled results• Inequalities• Local view s

Again, JSNA data can help in this process, along w ith more in-depth information on currentlocal services and the very detailed resources available in the DH Dementia CommissioningPack. The follow ing very briefly sets out some of the w ays in w hich dementia information canbe used in this process.

Figure 5. Notes on dementia in relation to priorit ising specif ic investments

Criteria Notes on dementiaMore detailed information oncurrent and projected servicerequirements.

The JSNA information cited above can be broken down intoestimated annual requirements for dementia services for eachyear of the local strategy (using population, prevalence andincidence projections). Models such as the NICE memoryassessment tool and the more detailed information in the DHcommissioning pack can be used to quantify need and match itagainst current provision.

Evidence of effectiveness andcost-effectiveness, andevidence-based pathways forkey topics taking into accountlocal circumstances

There is an increasing amount of evidence relating to dementiaservices although some is based on a relatively small number ofstudies (reflecting the low level of investment in R&D comparedto some other health conditions). Part 1.2 of this briefing gives asummary of some key evidence together with sources wherefurther detail can be found. Guidance and pathways are alsoavailable from sources such as NICE and the national dementiaportal.

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Modelled results It is important to quantify the expected results on an interventionrather than simply say that it wil l result in ‘improved’ quality oflife, for example. This will help to assess the extent to which oneintervention may be better value for money than another and willbring more specific meaning to phrases such as ‘cost effective’or ‘cost saving’. For example early diagnosis and intervention isheld to be cost saving, but it is important to know which costs willbe saved and when the savings will occur. Again moreinformation is available in section 1.2 and particularly in the DHdementia tools.

Modelled results should include sensitivity analysis to cater forthe fact that local ‘real world’ costs and impacts may be differentto those cited in a national model.

Inequalities More detailed local modelling can include investigating the effecton different groups or localities. This can help to assess whetherparticular interventions might reduce or widen inequalities andensure that services are provided equitably.

Local views Local views can be crucial in the design of specific interventionsto help ensure that they are tailored to local needs and will bethus be used effectively. This can include taking into accountspecific groups such as the growing number of people fromblack and minority ethnic groups who have dementia.Involvement in the development of service specifications can beone way of ensuring that local views are heard at this stage.

Evidence of this kind can help to build up a recommended list of investments, disinvestmentsand other specif ic changes. This w ill help to ‘join up’ the JSNA w ith commissioning plans byhelping to priorit ise specif ic interventions in a more open and detailed w ay. There w ill ofcourse be many gaps in the know ledge required and in such cases the judgement ofrelevant people w ill be an important part of the equation.

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Section 1.2 Cost effectiveness of dementia services

1.2.1 IntroductionThis chapter looks at the cost effectiveness (or ‘value for money’) of services to improvedementia care. Cost effectiveness can be diff icult and confusing territory and should betreated carefully. Commissioners w ill often come across ‘evidence’ that a proposed service isvery cost effective (or will even save money!) but it is important to ask the r ight questionsand to be aw are of what this actually means in practice.

This section of the information pack tries to guide commissioners through the costeffectiveness minefield and to interpret some of the most important cost effectivenessevidence relating to dementia. It aims to give practical help to commissioners in makinginvestment decisions.

After looking at the costs of dementia, the chapter highlights some of the main concepts thatare used in health economic evaluations and draws attention to some key questions theypose. The main body of the chapter sets out some of the key economic evidence relating todementia and offers some brief notes to help w ith interpretation. While there is no ‘correct’answ er, or cost effectiveness ‘league table’ for dementia, it is hoped that the informationprovided here w ill be a useful support to commissioners.

1.2.2 Cost of dementiaThe total cost of dementia in England w as estimated at £15.9 billion per annum (2009) and isprojected to more than double to £34.8 billion in 20261. This equates to an average increasein costs of more than £1 billion every year. Table 1 provides a breakdow n by type of cost.

Table 1. Estimated costs of dementia in England, 2009 and 2026.

Type of cost 2009 (£ billion) 2026 (£ billion)Residential care costs (shared by families30% and public spending 70%)

6.42 14.3

Informal care costs to families 5.80 12.6Health and social care costs 3.68 8.0Total economic costs 15.90 34.80Source: National Audit Office 2010 (based on earlier work by Knapp and the King’s Fund)

Average costs for caring for people w ith different levels of severity of dementia w ere reportedin ‘Dementia UK’. These are set out below and usefully show the differing impacts as thecondition progresses. The biggest change as patients move from relatively mild to moresevere dementia is the greater cost to informal carers rather than to health and social careservices. How ever the level and distribution of cost alters substantially w hen people movefrom the community into a care home setting.

Table 2. Annual costs of services used by people w ith late onset dementia (per person),2005/06.

1 National Audit Office. ‘Improving dementia services in England – an interim report’ NAO 2010.

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Service Milddementia,

community

Moderatedementia,

community

Severedementia,

community

Dementia inresidentialcare setting

NHS £2508 £2430 £2639 £1334Social services £4935 £6224 £7738 £378Informal care £9246 £17,223 £27,096 £938Accommodation £0 £0 £0 £28,646

Total cost £16,689 £25,877 £37,473 £31,296Source: Dementia UK 2007.Note: These are 2005/06 costs and will have risen substantially since then.

1.2.3 Key concepts in cost effectivenessThe follow ing is a very brief guide to some of the most important terms used in healtheconomic evidence. They are sometimes implicit rather than explicit (particularly w henevidence has been summar ised) but should alw ays be considered. This is particularlyimportant w hen looking at data for tw o different interventions – it may not be comparing ‘likewith like’.

Figure 6. Some key concepts used in cost effectiveness evidence

Term/concept NotesCost of intervention The quoted cost of an intervention is normally the cost at the time

that the underlying research was carried out. If the relevant year isknow n the figures should be uplif ted to current year costs. Publishedcosts may also be ‘national’ f igures and may need to be adjusted forLondon prices.

Health outcomes This is the result of the intervention in terms of the actual healthimprovement gained. There are different ways of measuring this buttw o main indicators are the number of years of life gained and thenumber of QALYs gained (see below). It is also important to seewhich population groups w ould benefit from the intervention (andwhether it might reduce or increase inequalities in the population).

QALYs QALYs are a way of expressing health outcomes in a ‘currency’ thattakes account of length of life and the level of health experienced.One year of life lived in perfect health is equal to 1.0 QALY. A yearlived at 80% health w ould be 0.8 QALYs. The w ay in w hich QALYvalues are attributed to an intervention can be unclear and/orsubjective.

Timescales anddiscounting

The impact of an intervention can take place over differenttimescales and w hen relatively long can be ‘modelled’ rather thanactually know n. Discounting is a w ay of adjusting for the fact thatpeople generally prefer short-term effects to those that take place farinto the future. This is done by applying a percentage reduction to acost or outcome figure for each year that passes. For example 10years lived at 80% health w ould be 8.0 QALYs w ithout anydiscounting, but w hen discounted at 3.5% per annum it w ould beequal to 6.8 QALYs.

Savings These can be gross (before intervention costs have been deducted)or net (after the intervention costs have been deducted). It is alsoimportant to know whether the savings are actually real f inancialsavings or whether they also include things such as the economic

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‘value’ of health gains made.Perspective The costs and savings can relate to the NHS, to social care, to the

public sector generally, to clients and carers and to the w idereconomy (eg economic productivity). Different economic studies canemploy different perspectives, making comparisons diff icult

Strength of evidence Evidence of effectiveness can come from a range of sources and thetype and quality of the underlying research can vary. This can affectthe degree of confidence in the evidence and the extent to w hich itcan be readily applied.

The w ay in which economic evidence is presented can sometimes hide these factors. It canalso make evidence seem more ‘objective’ than it really is. For example the expression ofhealth outcomes as QALYs is not a straightforward science and different methods can yielddifferent results.

In planning any service it is important to cater for different alternative futures. Goodeconomic studies employ ‘sensitivity analysis’ to test the impact of different costs oroutcomes, for example, and models often allow users to do the same.

Bearing in mind the above, it is useful to ask some key questions in considering cost-effectiveness in dementia. These might include the follow ing:

• Are the stated costs and effects likely to be the same locally? (for example w ill theservice model be different locally or w ill costs be different?)

• What is the timescale for the costs and effects? (and how has this been taken intoaccount)

• Will the savings be real f inancial savings or are they more like ‘savings in kind’ (egthe notional economic value of health gained)?

• What perspective has been used? (and how does this f it w ith local commissioningarrangements?)

• Does the evidence come from a reliable source?• What allow ance should be made for uncertainty?

1.2.4 Cost effectiveness evidenceThe follow ing pages draw material from a range of sources. They try to summarise economicinformation in a user-friendly w ay bearing in mind the issues raised above. While this couldpotentially be a very lengthy exercise, the evidence table focusses as much as possible oninterventions that:

a) specif ically relate to people w ith dementia – w hile recognising that there is a w iderbody of evidence relating to the care of older people more generally.

b) have some quantif ied evidence of costs and effects (and w here value for money istherefore more explicit).

The table is not exhaustive and does not cover all the evidence relating to health outcomesor quality of life – the focus is on economic and resource impacts that need to be taken intoaccount to ensure good value for money. The emphasis here is on the key messages ratherthan the detail and on interpreting the evidence to help in ‘real w orld’ commissioning.

Figure 7. Summary of key cost effectiveness evidence relating to dementia care.

Interv ention What does the evidence say? Notes/ interpretation forcommissioners

Anti-dementiadrugs

The additional cost of implementing NICE guidanceon anti-dementia drugs is estimated as £41,800 per

This is the gross cost basedon a number of assumptions

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100,000 populationiv. Although the numbers ofpeople requiring the drugs will increase in time (asdetection and prevalence increases), there arelikely to be price reductions in future as genericdrugs become available. NICE was unable toquantify savings as a result of implementing theguidance but some savings have subsequentlybeen calculated by the DH (see below)

about diagnosis and referralrates. The savings resultingfrom improved health statusand lower utilisation ofhealth care services alsoneed to be taken intoaccount. This is consideredfurther in the section onmemory asse ssmentservices below.

Care homesupport/liaison

“Delivering older people’s mental health services tocare homes improves quality of life, reducedprescribing of antipsychotic drugs, use of GP timeand days spent in hospital”v vi. The second of thesestudies examined outcomes in 6 nursing homes inLondon, Newcastle and Oxford that benefitted frombehavioural management input and other trainingand support (by a psychologist, occupationaltherapist or nurse) for two days a week over a 10month period compared to 6 homes without theintervention. Prescribing of neuroleptic drugs after12 months was 23% in the intervention groupcompared to 42% in the control group.

This shows improvedoutcomes in care homesreceiving additional input.However numbers of clientswere quite small and there isno economic data to identifythe degree of costeffectiveness.

A care home liaison service consisting of aconsultant psychiatrist and five mental healthnurses wa s set up in Doncaster in 2006. It providesrapid access to specialist mental health services forcare home residents together with training andother support to care home staff.The serviceoutcomes were reported as fewer admissions tomental health wards (6 in the first 12 monthscompared to 24 in the 12 months prior to theintervention), shorter length of stay of admissions,reduced antipsychotic prescribing, and improvedquality of carevii.

Again, improved outcomesfrom dedicated care homesupport but no data toassess cost -effectiveness.The impact on acute hospitaladmissions is not reported.

Extracare “Over half of people with dementia living in ‘extracare’ housing are transferred elsewhere during thefirst two years due to challenging behaviour,distress and conflicts with staff and other residents.The Enriched Opportunities Programme employs astaff member with specialist mental health trainingand expert support to provide leadership andengage with residents and relatives, and health andsocial care teams, to support residents. Ouranalysis of the Programme data indicates that if itwere rolled out to all existing extra care settings inEngland, over a two-year period, the net savings tothe public through reduced hospital stays andreduced use of nursing homes could be £21 mill ion,shared between Local Authorities and the NHS, or anet present value of £89 million over 10 years” viii.

The enriched opportunitiesprogramme providesadditional support to peoplewith dementia in extra care.It appears to be cost savingand further details of costsand assumptions used in themodel are available in atechnical appendix to the2010 NAO report.

A literature review found mounting evidence thatpeople with mild or moderate dementia living inextra care housing ‘generally have a good quality oflife’ although there is a risk of loneliness, isolationand discrimination. However “evidence about thecost-effectiveness of extra care generally is sparceand contradictory”ix.

Much of the research onextra care itself is from theUSA rather than the UK.

Intermediatecare, re-ablement and

The National Audit Officex commissioned modellingwork to examine the degree to which hospital lengthof stay could be shortened for people with dementia

This appears to be a costsaving intervention that isworthy of further

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rehabilitation admitted with a hip fracture. Before theinterventions length of stay was 43 days for peoplewith dementia compared to 26 days for people whoare psychiatrically well, and health outcomes (suchas mortality rates and care home admission rates)were worse for those with dementia. A ‘geriatric hipfracture programme’ (involvement of the geriatricteam in orthopaedics) could reduce length of stayfor people with dementia by an average of 9 daysand save £64-80 million nationally, while a hospitalat home/early supported discharge package couldreduce length of stay by 6.9 days and save £46-102million nationally.

investigation depending onlocal circumstances.

A Finnish study of older people with mild ormoderate dementia admitted to hospital due to hipfracture looked at the effect of allocating patients toa geriatric ward with additional rehabilitation supportcompared to normal care. They found that medianlength of stay was significantly shorter in theintervention group (47 days for those with moderatedementia compared to 147 days without theintervention, and 29 v 64 for those with milddementia) as was the proportion livingindependently after dischargexi.

This is a Finnish study thatpreceded the above NAOmodelling and also showsthat greater intensity ofintervention reduces hospitalbed use and improvesoutcomes. No cost datawere included and numbersof patients were small insome groups in the study.

Memoryassessmentservice

Some of the benefits of commissioning a memoryservice for the early identification and care ofpeople with dementia include:

• providing a cost-effective way ofsignificantly increasing the number ofpeople seen for early diagnosis andinterventionxii

• reducing total care expenditure by delayingthe time to nursing home admissions andother costly outcomesxiii

• providing better value for money, byenabling patients and carers to organisethemselves so that they can cope better athome, and prescribing drugs to the minorityof patients who could benefit from them,resulting in a cost-saving in social carexiv

This is a high level DHstatement of the costeffectiveness of memoryservices. Further details areset out below.

The DH toolxv estimates that early identification canlead to an average cost saving of £2970 per patientwho is started on appropriate anti-dementiamedication (2009/10 prices). This is derived from anestimated delay in care home admission of one anda half months for those with Alzheimer’s who arestarted on anti-dementia drugs and from additionaldelays in admission due to improved communitycare and better awareness for all people diagnosedwith dementia. The savings figure takes account ofthe additional social care and community healthcarethat will be incurred.

In terms of quality of life, the DH tool assumes again of 0.01 QALYs per person started on anti-dementia drugs, based on NICE findings (TA 111).

The model sets out therelative costs and savingsrelating to the NHS, socialcare and clients themselvesbased on assumptions thatcan be altered by users tosuit local circumstances.

The majority of savingsassociated with memoryservices would accrue tosocial care and to clientsthemselves. On average, anet saving is estimated to bemade 5 years from the startof the intervention and tocontinue annually thereafter.

Early referral and diagnosis and drugs from memoryservices would cost £182.5 million across Englandand would bring savings of £365.7 million (a netsaving of £183.2 million).

These savings assumptionsare based on delayed entryto care homes and accrue tosocial care and self-funders.

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There may also be additional cost savings arisingfrom reduced adverse events, reduced hospitaladmissions and reduced prescribing of anti-psychotic drugs.

Additional savings to theNHS are also likely, but notincluded in these figures.

“Knowledge of the diagnosis can also reduce thenumber and length of acute hospitaladmissions, delay the need for long-term residentialcare and allow families to plan for future medicalcare and finances”xvi

These are additionalpotential savings that are notincluded in the DH model.

Evaluation of the Croydon memory asse ssmentservice showed that there were statisticallysignificant improvements in quality of life and inbehavioural disturbance after six monthsxvii. Thisrepresents “around 4% of the interval between thelowest and highest possible states”xviii.

The number of patientsfollowed up was small (about100) and there was nocontrol group so theseresults need to beinterpreted with caution.

Specialistolder people’smental healthteams ingeneralhospitals(Liaisonpsychiatry)

Provision of specialist support for people withdementia in acute hospitals includes a dedicatedliaison team (consultants and nurses) and provisionor referral to appropriate therapies. The DH toolassumes that an average reduction of 2 days inhospital length of stay can be achieved for everypatient seen and care home admissions reduced.This is due to reduced delayed discharges,improved staff knowledge of dementia andimproved care and amounts to a total averagesaving of £980 per patient net of additional costsincurred.

Nationally, hospital liaison services would cost£54.3 million per annum and save £112.2 million,bringing a net saving of £57.9 million per annum.The savings here are largely calculated on the basisof earlier discharge of patients with hip fracture andare therefore an underestimate (as other patientswould also benefit). They do not include additionalsavings that may arise from reduced re-admissionand reduced anti-psychotic drug prescribing.

The cost savings fromreduced length of stay wouldaccrue to the NHS (ratherthan to social care orindividuals) and would beimmediate.

Again, specific costs andsavings can be calculatedfor each PCT population.

Support toprimary carefor peopleliv ing at homeand in a carehome

The DH tool calculates costs and savings relating toa community support service as set out in theassociated service specification. This is expected toachieve a 1% reduction in emergency hospitaladmissions, increased staff knowledge andawareness of dementia in both the community andin care homes and overall better care delivered todementia patients.

This is expected to achieve an average saving of£597 per person from reduced emergencyadmissions alone (after costs have been taken intoaccount).

Across England the support service would beexpected to cost £6.5 million and to bring grosssavings of £36.3 million (a net saving of £29.8million per annum in England). This saving relatesto reduced emergency admissions alone, andtherefore excludes the financial benefits of otherpossible consequences of better care.

This would appear to be asubstantial cost saver to theNHS with savings occurringfrom year one. However themodel should be used withcaution as the evidence ofreduced hospital admissionsis not of high quality. It wouldbe wise to make a number ofalternative possibleassumptions (eg higher orlower savings) and monitoroutcomes carefully.

Support forpeople with

A number of studies of home support for peoplewith dementia have been cited. These include the

None of these studies arevery recent and the details of

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dementialiv ing at home(includingcrisisresolutionteams)

following quotes all from Department of Healthdocuments. Full references to the original articlesare provided in the footnotes.

• “Early provision of in-home support candecrease institutionalisation by 22%”xix.This was a large (but not randomised)study with three year follow up in the USAthat looked at the effects of home supportand day care.

• “Reductions (in institutionalisation) of 6%even in more severe cases with a highlyactive control have been reported for casemanagement in dementia”xx

• “One third reported receiving little or nosupport from the local older people’smental health service. Ballard et al. (2002)found that such a service couldsignificantly reduce the use of potentiallyharmful neuroleptic drugs and reduceadmissions to mental health inpatientfacilities”xxi

• “Clarkson et al. (2002) reported that forolder people at risk of admission to long-term care, integrated assessment offereda means of potentially delaying care homeadmission and taking account of a widerrange of factors in placement decisions”xxii

these interventions will vary.

A package of service changes in Suffolk includedthe introduction of crisis resolution and hometreatment teams for older people with mental healthproblems. In the six months before the new serviceall 65 of the 65 crisis events lead to hospitaladmission, while in the first six months of theintervention 70 of the 102 crisis events led toadmission. While both crisis events and admissionshad increased the findings were reported as a 31%reduction in admissions as the proportion ofpatients admitted had reduced.

The introduction of severalservice changes and theincreased workload meanthat these results are difficultto interpret.There was alsono data on cost-effectiveness.

The DH Dementia Commissioning Pack cites twokey studiesxxiii of the relative merits of generic andspecialist home care. They both found that there islittle difference between the two models in terms ofthe quality and benefits they bring.

As specialist teams tend tobe more expensive onaverage (and probably lessflexible) it would appear thatgeneric teams may offerbetter value for money.

Support forcarers

A programme of carer support and counselling(consisting of six sessions of individual and familycounselling, support group participation andcontinuous availabil ity of ad hoc counselling)resulted in a 28% reduction in the rate of nursinghome placement compared to usual care. Therewas a modelled median delay to placement of 557days compared with those not receiving theintervention. There were also improvements inquality of life and satisfactionxxiv

This was a relatively highquality study (RCT) carriedout in New York with 406participants. It did notinclude cost effectiveness assuch but it noted that theaverage saving from delayednursing home admissionwould be worth about$90,000 (2004 prices), andwould far exceed the cost ofcounselling.

An article quoted by the DH “found that providingcomprehensive support to carers resulted in 65% ofthe cared-for group of people with dementiaremaining at home after 30 months, compared to26% in the control group, and that such delays in

This article dates back to1997. The full reference is inthe footnote below.

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institutionalisation led to cost savings”xxv

Package ofservices

DHxxvi and Banerjee & Wittenbergxxvii makesassumptions based on a 6%, 10% or 20% reductionin care home admissions resulting from threeinterventions:

• Memory services• CMHTs for older people• Social care for older people with mental

health problems.

Savings are assumed to start from year 4 from theintervention.Reduction in care home admissions:6% = £25m public sector cost savings in year 4,rising to £75m in year 1010%= £45m savings year 4 up to £120m year 10.20% = £95m savings year 4 up to £245m year 10.

It indicates that after 10 years the cost would be£265m pa.The savings in the middle scenario would be £120min public spending and £125 in private spending, atotal saving of £245m pa (ie a net cost to the publicsector of £145m pa and a net cost to society as awhole of £20m pa). Total societal savings would be£150m in the 6% scenario and £490m in the 20%scenario.

Over the 10 year period the total cost to society ofimplementing these measure nationally would be£950 million (NPV at 2007/08 prices).

Note that not all costs andsavings were included. It didnot include the cost of extrainvestigations, carepackages in the community,medication or other need forhealth and social care thatmight be uncovered) nor theadditional costs to carers.The savings relate only toreduced care homeadmission and exclude (forexample) reduced use ofhospital beds (by preventingadmission and by earlierdischarge), and decreaseduse of community socialcare.

The study is a modelledresult rather than actualresearch evidence, butindicates what might bepossible. It suggests that inthe middle scenario thepublic sector might receivesavings worth halve itsinvestment.

“In Leeds, a 2008 review of the dementia carepathway led local health bodies to introduce:

• Psychiatric Liaison Service in the acutehospital

• rapid response community mental healthteam

• specialist short term mental health homecare; and

• dementia-specific intermediate care bedsInitial funding of £4.2 million from the nationalPartnerships for Older People’s Project led to anaverage reduction in hospital length of stay of fourdays per admission, for people with dementia overthree years. This released beds to achieve othertargets, such as the 18-week wait. The absence ofa national tariff for mental health services has madeit difficult so far to estimate the savings”xxviii.

Another report of this projectxxix suggested thatthere have been cost savings of around £2 millionper year and that had the liaison team not been inplace for 2008/9, there would have been 4,106additional bed days for patients with dementia,equating to 11.2 extra beds.

With packages of services itis hard to distinguish whatspecifically makes thebiggest difference. Howeverthe very substantial initialinvestment does appear tohave led to ongoing costsavings.

“In 2007 the National Audit Office commissioned theBalance of Care Group to undertake a bed usagesurvey in Lincolnshire NHS and social care settings.They found people with dementia most commonly inacute beds, but most no longer needed to be there.If those people with dementia who did not need

A reference in the 2007report to a total of £6.5million being spent onexcess bed days in theLincolnshire Trust has led towidespread mis-quoting of

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acute care were cared for in an alternative setting,this would save £500,000 per annum. Similarly, iflength of stay for people with dementia werereduced, around £400,000 would be saved,generating total savings of £900,000 for oneprimary care trust, or £135 million across England.Since 2007, Lincolnshire believes it has made morecost effective use of resources that were previouslytied up in the acute setting”xxx.

the potential savings frombetter dementia care. This2010 description gives amore realistic picture.

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Section 1.3 Making change and measuring progress.

1.3.1 IntroductionThis section looks firstly at levers for change. It goes beyond the service investments thatmight result from needs assessment and commissioning plans, and looks also at the w iderinfluence that Health and Wellbeing Boards and Clinical Commissioning Groups are likely tohave in their ow n localities. This can be considerable and can go far beyond narroworganisational boundaries.

Whether change is made through commissioning, through w ider influence or both, it isimportant to be able to measure progress. The second part sets out a menu of possibleindicators to help assess improvements and to point to issues for further action.

1.3.2 Levers for changeHealth and Wellbeing Boards and Clinical Commissioning Groups have an influence thatgoes beyond their specif ic organisational pow ers. As part of the local community they are ina strong position to make a posit ive impact not only on dementia health and social careservices but on w ider issues including the perceptions of local people. This potential isillustrated in Figure 8 below . Although this focusses on dementia, many of the w ider issueshave a broader applicability (for example to mental health and w ellbeing generally) and couldbe used in a less ‘disease orientated’ context.

Figure 8. Illustration of the types of levers available to commissioners

Source: P Brotherton for NHS London 2011

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Some specif ic levers for change are listed below . These are set out under each of thecategories in Figure 8 although it should be noted that many of the levers can apply to morethan one category. These have not been repeated to avoid duplication. The levers do notinclude the details of investment in part icular dementia services (eg memory services) butfocus more on the w ider mechanisms that could be used to make improvements.

Awareness and perceptions• Identifying local leaders for dementia (these could be from a w ider constituency

rather than just health and social care)• Raising public aw areness to help in detection, understanding the nature of the

condition, and reducing stigma (through community groups, social media, w ebsites,new spapers, TV, radio etc).

• Awareness amongst local politicians• Promoting a more ‘dementia-friendly’ approach through local shops/businesses etc.• Demonstrating Board-level commitment and leadership• Providing information about local services

Environment/ context• Information on benefits entitlements/ w elfare rights/ broader rights• Involving a w ider group of professionals (eg housing)• Monitoring demand, supply and utilisation of care homes• Stimulate the provider market• Provide fora to bring diverse range of interests together• Spatial planning eg care home planning applications and condit ions attached• Supported housing including Extra Care

Intelligence• Inf luencing and taking part in dementia research• Inf luencing topics to be covered by NICE guidance and appraisals• Including dementia in JSNA• Encouraging complete and high quality coding of dementia in local service providers• Equity audit of local dementia services• Using indicators to monitor progress (see below )

Strategy• Inf luencing national strategy and policy• Making the links betw een dementia and other strategic goals (eg eff icient hospital

bed utilisation)• Incorporating dementia in the local Health and Wellbeing Strategy• Setting pr iorities in strategic and operational commissioning plans

Services• Investment in dementia-related services• Working w ith related services to ensure that the needs of people w ith dementia are

met (eg learning disabilit ies, acute services, carers support, end of life care etc)• Ability to decommission services and/or tender for services• Implementing the Equalit ies duty to ensure that people w ith dementia are not

adversely affected (and to ensure that dementia services are equitable)

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• Pooled budgets/ joint commission (eg to take a broad view of costs and savings fromservices)

• Including dementia in QIPP (eg to reduce length of stay)• Taking a holistic approach across the local health economy including the voluntary

and independent sectors• Including dementia in performance monitoring across all services• Including people w ith dementia in programmes for people w ith long term condit ions

such as risk stratif ication/ admission avoidance programmes

Experience.• Patient/carer involvement and feedback (eg see DH ‘Strengthening the involvement

of people w ith dementia’)• Using CQUIN to rew ard quality in dementia services• Service specif ications to improve quality (see the DH Dementia Commissioning Pack

for examples)• Using performance standards, monitor ing and contractual mechanisms to ensure

quality)• Clinical audit of dementia and other services• Ensuring that adequate Adult safeguarding mechanisms are in place• Including the needs of people w ith dementia in w ider health and social care contract

specif ications.• Care Quality Commission inspections/reviews• Peer group review s of dementia care• Including voluntary and independent sector staff in workforce development plans• Providing/ facilitat ing/ encouraging training and w ider learning processes (across

organisations)• Encouraging the involvement of volunteers in dementia services• Supporting dementia fora and clinical netw orks• Monitoring of incidents/ complaints etc relating to services used by people w ith

dementia.

1.3.3 Indicators for measuring progressVarious national and local publications have suggested indicators to measure progress withdementia care over time. This section consolidates indicators from a range of sources toprovide a menu from w hich some can be selected according to local requirements. It is notexhaustive but provides a selection that cover key topics and includes more notes andinformation on sources than is sometimes provided elsew here. The menu includes theindictors listed in the Department of Health’s Dementia Commissioning Pack.

Most of the indicators can be draw n from existing data systems, although a minority w ouldrequire special local data collection if chosen. Like any indicators they should not be used bythemselves but should be seen alongside other types of information to paint an overallpicture. These might include key data routinely used in commissioning such as activitylevels, w aiting times and quality measures.

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Figure 9. Menu of possible indicators to use in measuring progress w ith dementia care

Topic Possible indicators NotesAre people w ithdementia beingidentif ied at anearly stage andhaving thepotential tobenefit fromearlyintervention?

Number of people recorded ashaving dementia on GP registersas a % of estimated prevalence ofdementia.

Included in the DH DementiaCommissioning Pack (earlydiagnosis and intervention servicespecif ication) as the ‘number ofpeople w ith a formal diagnosis ofdementia as a percentage of thelocal predicted prevalence’. Givesan overall impression of the extentto w hich people are detected andrecorded.Source: Local GP register datatogether w ith estimated prevalence*based on Dementia UK age/sexrates.

Proportion of new referrals tomemory services that have mildcognitive impairment.

Included in the DH DementiaCommissioning Pack (earlydiagnosis and intervention servicespecif ication) but w ithout adefinition. NHS London suggestsusing the percentage w ith an MMSEscore of 19 or more.Source: Local memory services.

Percentage of patients and carerssurveyed w ho are satisf ied w ith thememory service.

Included in the DH DementiaCommissioning Pack (earlydiagnosis and intervention servicespecif ication)Source: User/carer survey

Are localprimary careservicesproviding

Number of people w ith dementiareview ed in primary care in the last15 months as a % of those eligibleto be review ed.

Regular review in primary care helpsensure that changing needs areidentif ied.Source: QOF (Dem2)

reviewsand appropriatedrugtreatments?

The percentage of patients w ith anew diagnosis of dementia from 1April 2011 to have FBC, calcium,glucose, renal and liver function,thyroid function tests, serumvitamin B12, and folate levelsrecorded 6 months before or afterentering onto the register.

Helps ensure that treatable causesof dementia are being identif ied orexcluded.Source: NICE QOF indicator2011/12.

Number of prescriptions fordementia related drugs (andspend) compared to estimatedprevalence of dementia

Broad indicator of the extent towhich treatments potentially usefulfor some patients are beingemployed locally.Source: ePact

Is social careprovision at alevel thatprovidesadequatepopulation

Total number of new mental healthclients aged 65 and over w ithcompleted social careassessments during the yearcompared to the estimatedincidence of new cases of

Indicates the overall proportion ofnew cases that receive a formalsocial care assessment and thuspotentially enter care services.Source: RA P Table A11B (from2010/11 – see RAP Table A7 for

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coverage? dementia in the year, by agegroup.

previous years), together w ithestimated incidence based onDementia UK age/sex rates.

Total number of clients w ithdementia** receiving services (byservice type) compared to theestimated prevalence of peoplewith dementia, by age group.

Indicates overall service coverage inrelation to potential need and thebalance betw een community andresidential services.Source: RA P Table P1, togetherwith estimated prevalence based onDementia UK age/sex rates*.

Proportion of existing clients w ithdementia** w ho were review edduring the year by age group.

Indicates the extent to w hich thosepeople in the care system arehaving their needs re-assessed inorder to ensure that services matchtheir changing circumstances.Source: RA P Table A1 for thenumber review ed and RAP Table P1for the number of clients usingservices.

Proportion of mental health clientsaged 65 and over supported bysocial care w ho receive directpayments/personal budgets

Indicates the degree to w hichcurrent clients are empow ered toobtain tailor-made services throughpayment mechanisms.Source: RA P Table SD1.

Are peopleliving w ithdementia andtheir carersbeing

Proportion of people w ith dementiawhose individual needs areassessed and w hose care planstates how those needs w ill beaddressed.

This is suggested by NICE in thedementia quality standards (QS4a)Source: local data collection.

supported to livewell?

Proportion of people w ith dementiawith a named health or social carecoordinator.

This is suggested by NICE in thedementia quality standards (QS4b)Source: local data collection.

Proportion of people w ith dementiawith mild-to-moderate non-cognitive symptoms w ho areprescribed anti-psychoticmedication.

Although this is a key national policythere is no routine data collection inplace. The indicator w as suggestedby NICE in the dementia qualitystandards (QS7c)Source: local data collection.

Spend per capita on anti-psychoticmedication for people w ithdementia compared to the bottomnational quartile of the baselineyear.

Indicator included in the DHDementia Commissioning Pack(better care at home/ in care homesservice specif ication)Source: There is currently noadequate system for implementingthis indicator.

Proportion of people supported tolive in care homes w ho are placedwithin the boundary of the socialservices authority.

This is suggested here as a methodof assessing the overall supply oflocal care home places in relation topopulation need.Source: local data collection.

Number of carers assessments forcarers of older people as apercentage of the expected annualincident number of cases ofdementia in the year.

Not specif ic to dementia but gives abroad indication of the extent towhich carers’ needs are beingassessed.Source: RA P C1

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The number of carers whoreceived a specif ic carer’s service(not including advice orinformation) as a percentage ofcarers receiving an assessment inthe year.

This is broadly similar to NICEdementia quality standard QS10 andindicates coverage of specif ic carersservices such as respiteSource: RA P C2 and C1.

Percentage of patients and carerssurveyed w ho are satisf ied w ith the(community) service

Included in the DH DementiaCommissioning Pack (care at home/in care homes service specif ication).Source: User/carer survey

Is hospital careappropriate?

Inpatient admissions w ith aprimary diagnosis of dementia as arate per 1000 people w ithdementia (break dow n into type ofadmission and type of hospital ifrequired)

Included in the DH DementiaCommissioning Pack (care inhospitals service specif ication) as‘The number of unplannedadmissions and readmissions ofpeople w ith dementia to general andcommunity hospitals compared tobaseline year’Source: SUS data and estimatedprevalence* based on Dementia UKage/sex rates.

Inpatient admissions w ith anydiagnosis of dementia as a rateper 1000 people w ith dementia(break dow n into type of admissionand type of hospital if required)

Notes and source as above, but alsonote that improved recording ofdementia as a second or otherdiagnosis could affect this indicator.

Average length of stay for patientswith specif ic primary diagnoses (egICD codes N390, J181, J189,S720 and J22X) for patients w hohave a secondary or otherdiagnosis of dementia and forthose w ho do not have a diagnosisof dementia.

This is suggested here as a meansof f inding out w hether patients w ithdementia w ho are admitted foranother common reason (eg urinarytract infection) have substantiallylonger lengths of stay than thosewithout dementia. An alternative isto look at excess bed days abovethe trim point.Source: SUS data.

Annual average length of stay inhospital for patients w ith dementiacompared w ith annual average inbaseline year.

Included in the DH DementiaCommissioning Pack (care inhospital service specif ication)Source: SUS data.

Annual number of peopledischarged directly from hospital tocare homes as a new place ofresidence compared w ith baselineyear.

Indicator included in the DHDementia Commissioning Pack(care in hospital servicespecif ication)Source: SUS data.

Proportion of people w ithsuspected or know n dementiaattending A&E or admitted to acuteand general hospital beds that areassessed by a liaison service thatspecialises in the diagnosis andmanagement of dementia andolder people’s mental health.

This is suggested by NICE in thedementia quality standards (QS8)Source: local data collection.

Percentage of people w ho areseen by the hospital dementia

Indicator included in the DHDementia Commissioning Pack

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(mental health liaison) service andwho are on antipsychoticmedication at point of dischargewho have a plan to review usepost discharge.

(care in hospital servicespecif ication)Source: local data collection.

Percentage of patients and carerssurveyed w ho are satisf ied w ith theservice.

Included in the DH DementiaCommissioning Pack (care inhospital service specif ication)Source: User/carer survey

Are dementiaservices beingused equitably?

Proportion of people using localdementia services w ho are fromBME groups compared to theestimated proportion of people w ithdementia in the population w ho arefrom BME groups.

This suggested measure of equitycan take the form of routine dataanalysis or special equity auditexercises.Source: Ethnic group is nowcommonly collected and availablethrough SUS data, RAP data andmany community services.Estimated prevalence by ethnicgroup can be found by applyingDementia UK age/sex prevalencerates to local BME population data.

Proportion of memory service (andother dementia service) patientrecords that have ethnicity, age,gender, patient’s GP and patient’spostcode all recorded

This complements the previousindicator by assessing the degree towhich relevant data fields arecompleted.Source: memory service and otherlocal information systems

Proportion of GP practices thathave referred people to memoryservices during the year

This is aims to detect w hether or notall populations in the local area havegood access to memory services(there may be variations inaw areness or propensity to refer).Data can be adjusted to takeaccount of practice list size ifrequired.Source: Memory servicesinformation system.

Is appropriateend of life careavailable?

Proportion of people in the laterstages of dementia w hosepalliative care needs are assessedby primary care teams and theresulting information iscommunicated w ithin the team andwith other health and social carestaff.

This is suggested by NICE in thedementia quality standards (QS9).Source: local data collection.

Proportion of people w ithdementia, w hile they havecapacity, and their carer/s, who aregiven the opportunity to discusswith health and social careprofessionals about the use of:• advance statements• advance decisions to refusetreatment• lasting pow er of attorney• preferred priorities of care.

This is suggested by NICE in thedementia quality standards (QS5).Source: local data collection.

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Number of people w ith a maindiagnosis of dementia w ho die inhospital (and of these how manyhad been admitted from a carehome).

This is suggested here as a broadindicator w ith a year on yearreduction suggesting that end of lifecare in the community may beimproving.Source: SUS data (using postcodesto indicate residence in carehomes).

Notes*Prevalence data for London PCTs have already been calculated and are available in the Londondementia needs assessment and cluster information packs**The extent to which dementia is separately identified in social services RAP data varies widelyacross the country. If recording is felt to be problematic locally, an alternative proxy measure is thenumber of mental health clients aged 65 and over (although not all of these will necessarily havedementia).

References

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xviii Department of Health ‘Transforming the quality of dementia care – consultation on a national dementiastrategy’ (Appendix 4) DH 2008.xix Gaugler JE et al (2005) ‘Early community -based serv ice utilisation and its effects on institutionalisation indementia caregiv ing’ The Gerontologist, 45, 177-85 quoted in Department of Health ‘Transforming the quality ofdementia care – consultation on a national dementia strategy’ (Appendix 4) DH 2008.xx Challis D et al (2002) ‘Care management, dementia care and specialist mental health serv ices: an ev aluation’International Journal of Geriatric Psychiatry, 17, 315-25 quoted in Department of Health ‘Transf orming the qualityof dementia care – consultation on a national dementia strategy’ (Appendix 4) DH 2008.xxi Ballard C et al., Can psychiatric liaison reduce neuroleptic use and reduce health serv ice utilisation fordementia patients residing in caref acilities? International Journal of Geriatric Psychiatry, 2002; 17:140–5. Quoted in Department of Health ‘Casef orchange –community based services for people liv ing with dementia’ DH 2011.xxii Clarkson P et al., Integrated specialist assessment of older people and predictors of care-home admission.Psychological Medicine, 2006;36, 1011–1021. Quoted in Department of Health ‘Casef or change –community based services for people liv ingwith dementia’ DH 2011.xxiii Venables D et al. ‘Standards of care in home care serv ices: a comparison of generic and specialist servicesf or older people with dementia’. Ageing and Mental Health 2006 10(2): 187-194 and Challis C (2010) ‘PersonalSocial Serv ices Research Unit Expert Brief ing Paper 2’ University of Manchester.xxiv Mittelman M et al (2006) ‘Improv ing caregiver well-being delays nursing home placement of patients withAlzheimer’s Disease’ Neurology, 67, 1592-9xxv Brodaty H, Gresham M and Lusombe G, The Prince Henry Hospital dementia caregivers’ training programme.International Journal ofGeriatric Psychiatry, 1997; 12(2): 183–92. Quoted in Department of Health ‘Casef or change –community basedserv ices for people liv ing with dementia’ DH 2011.xxvi Department of Health ‘Transforming the quality of dementia care – consultation on a national dementiastrategy’ (Appendix 4) DH 2008.xxvii Banerjee S and Wittenberg R. ‘Clinical and cost effectiveness of serv ices f or early diagnosis and interventionin dementia’ in International Journal of Geriatric Psychiatry (2009) DOI 10.1002/gps 2191.xxviii National Audit Office. “Improving dementia services in England – an interim report”. NAO 2010.xxix Thornton, J, Leeds Popps Programme End of Year 2 report, 2008. Quoted in Department of Health ‘Case forchange – mental health liaison servicef or dementia care in hospitals’ DH 2011.xxx National Audit Office. “Improving dementia services in England – an interim report”. NAO 2010.