Dementia the case for action Sube Banerjee Professor

Dementia – the case for action Sube Banerjee Professor of Mental Heath and Ageing, The Institute of Psychiatry, King’s College London

Growth of numbers of people with dementia • The World Alzheimer Report (2009) estimated: – 35. 6 million people living with dementia worldwide in 2010 – Increasing to 65. 7 million by 2030 – 115. 4 million by 2050

Worldwide cost of dementia • The societal cost of dementia is already enormous. • Dementia is already significantly affecting every health and social care system in the world. • The economic impact on families is insufficiently appreciated. • The total estimated worldwide costs of dementia are US$604 billion in 2010. • These costs are around 1% of the world’s GDP 0. 24% in low income 1. 24% in high income

Worldwide costs of dementia • The World Alzheimer Report (2010) estimated that: If dementia care were a country, it would be the world’s 18 th largest economy

…so how are we doing?

6 “I’ve got it too Omar… a strange feeling like we’ve just been going in circles”

National dementia strategies • • • France Wales Scotland Australia Germany Norway Japan South Korea India England

England - background • Population 50 million • 16% over 65 • Life Expectancy at Birth – Males: 76. 9 years – Females: 81. 1 years • Religion – Christian: 72% – Jedi: 0. 7% – Sith: 0. 001% (350, 000) (500)

Overview of NHS • Aneurin Bevan, on July 5 1948 set three core principles: – That it meet the needs of everyone – That it be free at the point of delivery – That it be based on clinical need, not ability to pay Independent NHS commissioning board GP commissioning clusters (350+) • 1. 3 million workers • Third (or fifth) largest employer in the world • £ 100 billion per year • Social care a parallel system Social enterprises

Bringing it home, the local case - Dementia UK Report simple messages – common and costly Population prevalence (%) of dementia by age • Numbers with dementia 700, 000 In 30 years – doubling to 1. 4 m • UK dementia cost £ 17 billion pa In 30 years – tripling £ 51 billion pa Knapp et al (2007)

Dementia UK Report simple messages – under-recognised, under-treated Variation in treatment and diagnosis of dementia in the UK 24 x variation Variation in treatment and diagnosis of dementia across Europe

NAO Report – Value for money in dementia services - key findings • Size and nature of challenge – Big and growing – Doing nothing should not be a strategic option • Need for early diagnosis and intervention • Disjointed services in the community • Opportunities for increased cost effectiveness – “spend to save”

PAC report PAC 8 findings 1. 2. 3. 4. 5. 6. 7. 8. High priority Explicit ownership and leadership Early diagnosis Improving public attitudes and understanding Co-ordinated care All for carers too Improve care in care homes Improve care in general hospitals • Presented by committee as its most important report of the year • Review this year

National Dementia Strategy development • 12 month programme • Develop – National Dementia Strategy – Implementation Plan • First explicit prioritisation Programme Board Working group External Reference group

National Dementia Strategy - England • Published 2 Feb 2009 • Five year plan • 17 interlinked objectives • £ 150 million extra funding • Four key themes • • Improving awareness Early and better diagnosis Improved quality of care Delivering the Strategy

Objectives of the National Dementia Strategy

Improving public and professional awareness and understanding

Sometimes what we know is wrong

Dismantling the barriers to care: public and professional attitudes and understanding

Good-quality early diagnosis and intervention for all

The fundamental problem - now • Only a third at most of people with dementia receive any specialist health care assessment or diagnosis • When they do, it is: – – Late in the illness Too late to enable choice At a time of crisis Too late to prevent harm and crises

The solution • 80% of people with dementia receive specialist health care assessment or diagnosis • When they do, it is: – – Early in the illness Early enough to enable choice In time to prevent harm In time to prevent crises

Services for early diagnosis and intervention in dementia for all • Working for the whole population of people with dementia – ie has the capacity to see all new cases of dementia in their population • Working in a way that is complementary to existing services – About doing work that is not being done by anybody • Service content – Make diagnosis well – Break diagnosis well – Provide immediate support and care immediately from diagnosis Banerjee et al 2007, IJGP

Providing early intervention services – what does good look like? 1. Works for the whole population of people with dementia – ie has the capacity to see all new cases of dementia in their population 2. Works in a way that is complementary to existing services – About doing work that is not being done by anybody 3. Service content – Make diagnosis well – Break diagnosis well – Provide immediate support and care immediately from diagnosis

Priorities of people with dementia and carers from the consultation • O 4. Enabling easy access to care, support and advice following diagnosis – dementia advisors – not being left alone by services on the journey • O 5. Development of structured peer support and learning networks – third sector lead – who knows best?

Theme 3 - Improving quality of care • O 6. Improved community personal support services – generic and specialist – collation of data • O 7. Implementing the Carers’ Strategy for people with dementia – make it work for dementia • O 8. Improved quality of care for dementia in general hospitals – clinical leads for dementia, specialist liaison teams – collation of data • O 9. Improved intermediate care for people with dementia – change in guidance • O 10. Housing support, related services and telecare – watching brief • O 11. Living well with dementia in care homes – including review of use of antipsychotic medication in dementia • O 12. Improved end of life care for people with dementia – making it work for dementia

Living well with dementia in care homes Reduced use of antipsychotic medication

Ministerial review of use of antipsychotics in dementia • Published November 2009 • Comprehensive review – – • • Negative effects Positive effects Analysis of reasons for current clinical behaviour Practical clinical plan to deal with problems found

New data and extrapolation • NHS Information Centre for Health and • Estimates for the report Social Care completed analyses using the IMS Disease Analyzer – 25% people with dementia • Practices from England, Wales, Scotland receiving an antipsychotic and Northern Ireland a representative UK sample by age and sex. – 180, 000 people with dementia receiving an • 1, 098, 627 patients 12 -month period antipsychotic from 1 April 2007 to 31 March 2008. – 192, 190 people (17. 5%) over the age of 65 – 10, 255 (5. 3%) received a prescription for an antipsychotic. – Includes people with dementia at home as well as people in care homes

Summary of risks and benefits at a population level of the use of atypical antipsychotics for BPSD in people with dementia • data suggest that treating 1, 000 people with BPSD with an atypical antipsychotic drug for around 12 weeks would result in – an additional 91– 200 patients with behaviour disturbance showing clinically significant improvement – an additional 10 deaths; – an additional 18 CVAEs, » around half of which may be severe; – no additional falls or fractures; and – an additional 58– 94 patients with gait disturbance. • For UK – 1, 800 deaths per year – 1, 620 severe CVAEs per year For Australia • 700 deaths per year • 600 severe CVAEs per year

Analysis of why • Symptom of underlying system failure in health and social care for people with dementia • 1960 s response to a 21 st century challenge • Why lack of response to clear warnings – It is complicated – System does not allow change » Knowledge » Attitudes » Provision • Simple stuff eg specialists shouting at GPS does not work • Need to treat the cause as well as the symptoms

Action Provision of specialist input Use quality improvement mechanisms Improve skills in primary and social care

1. Use of quality improvement mechanisms R 1: Making the use of antipsychotics in dementia a clinical governance priority • across the NHS. • Using existing clinical governance structures • Medical Directors (or equivalent) – all primary care trusts, – all mental health trusts and – all acute trusts • Review their level of risk in this area • Ensure that systems and services are put in place to ensure good practice in the – initiation, – maintenance and – cessation of these drugs R 2: National leadership for reducing the level of prescription of antipsychotic medication for people with dementia • Provided by the National Clinical Director for Dementia, • Work with local and national services. • Report on a six-monthly basis to the Minister of State for Care Services on progress against the recommendations in this review.

1. Use of quality improvement mechanisms II R 3: National and local audit • Developed by the National Clinical Director for Dementia with national and local clinical audit structures and leads, • Audit to generate data on the use of antipsychotics for people with dementia in each PCT in England. • Baseline audit should be completed as soon as possible – April-July 2010 • Generating baseline data across England. • Repeated one, two and three years later to gauge progress. R 4: Improving quality and decreasing quantity of prescribing • clear, realistic but ambitious goals to be agreed for the reduction of the use of antipsychotics for people with dementia. – To one third of current level in three years • Explicit goals for improvement in their use where needed, – agreed and published locally – reviewed yearly at • primary care trust, • regional and • national level, • Information published yearly on progress towards them at each level.

1. Use of quality improvement mechanisms III R 9: Inspection • CQC to consider using as markers of the quality of care provided by care homes and PCTs – rates of prescription of antipsychotic medication for people with dementia, – adherence to good practice guidelines, – availability of skills in nonpharmacological management of BPSD – the establishment of care home in-reach from specialist mental health services • These data available by analysis of local audit data and commissioning decisions.

2. Improving skills R 5: Further research • including – clinical and cost effectiveness of non-pharmacological methods – other pharmacological approaches as an alternative to antipsychotic • The National Institute for Health Research and the Medical Research Council should work to develop programmes of work in this area. R 6: Developing skills for GPs and others working in care homes • The Royal Colleges of General Practitioners, Psychiatrists, Nursing and Physician • Curriculum for the development of appropriate skills for GPs and others working in care homes • Equip them for their role in the management – complexity, – co-morbidity and – severity of mental and physical disorder in those now residing in care homes. • Part of CPD

2. Improving skills II R 7: Curriculum for the development of skills for care home staff • inc non-pharmacological treatment of behavioural disorder in dementia • deployment of specific therapies • Senior staff in care homes should have these skills and the ability to transfer them to other staff members in care homes. • An NVQ in dementia care should be developed

3. Specialist input R 8: Each PCT to commission specialist older people’s mental health in-reach services • Supporting primary care in its work in care homes. • Commission as a new function by PCTs • Provided by specialist older people’s mental health services • Capacity to work routinely in all care homes where there may be people with dementia. • May be aided by regular pharmacist input into homes. R 11: Liaison for those in their own homes • Contact between specialist older people’s mental health services and GPs • to plan how to address the issue of people with dementia in their own homes who are on antipsychotic medication. • Using practice and patient-level data from the completed audits on the use of these medications, they should agree – how best to review and manage existing cases and – how to ensure that future use follows best practice in terms of initiation, dose minimisation and cessation.

3. Specialist input II R 10: Psychological therapies for people with dementia and carers • IAPT programme to ensure that resources are made available for the delivery of therapies to people with dementia and their carers. • Information and support should be available to carers to give them the skills needed to deploy elements of non-pharmacological care themselves in the home

What happened next… • Not a lot…

What makes things happen? commissioning

Operating Framework 2008/9 ‘dementia: providing people with dementia and their carers the best life possible is a growing challenge, and is one that is becoming increasingly costly for the NHS. Research shows that early intervention in cases of dementia is cost-effective and can improve quality of life for people with dementia and their families. The Department will shortly be publishing details of the clinical and economic case for investing in services for early identification and intervention in dementia, which PCTs will want to consider when developing local services ’

Operating Framework 2009/10 60. There have been a number of important 62. The National Dementia Strategy will Strategy developments in the last year within the be a comprehensive framework context of High Quality Care for All that aimed at driving up standards of will help PCTs determine how they health and social care services to develop and implement their local plans. improve the quality of life and These cover the following areas: quality of care for people with dementia and their carers. PCTs will want to work with local authorities • alcohol; to consider how they could improve • dementia; dementia services. • end of life care; • mental health; 3. 30 Nationally, there is a range of tools • military personnel, their dependants and to assist PCTs and specialised commissioning groups in delivering veterans; their priorities as world class • mixed-sex accommodation; commissioners. These include, but • people living in vulnerable circumstances; are not limited to: the developing and National Support teams (NST) for health inequalities, tobacco, • people with learning disabilities. alcohol, infant mortality, teenage pregnancy, sexual health, vaccinations and dementia… dementia

Revision to the Operating Framework for the NHS in England 2010/11 • One of only two new specific priorities • 13. During the recent sign-off of SHAs plans, two areas stood out as not being given sufficient emphasis. The first is ensuring that military veterans receive appropriate treatment… The second area is dementia. NHS organisations should be working with partners on implementing the National Dementia Strategy. People with dementia and their families need information that helps them understand their local services, and the level of quality and outcomes that they can expect. PCTs and their partners should publish how they are implementing the National Dementia Strategy to increase local accountability for prioritisation.

Quality outcomes for people with dementia: building on the work of the National Dementia Strategy (DH, 2010) ‘There are four priority areas for the Department of Health’s policy development work during 2010/11 to support local delivery of the Strategy. These areas provide a real focus on activities that are likely to have the greatest impact on improving quality outcomes for people with dementia and their carers. It is important to emphasise however that the priorities are enablers for local delivery of the Strategy in full, across all 17 objectives, as well as the work to implement the recommendations of the report in to the over-prescribing of antipsychotic medicines to people with dementia. The four priority areas are: – Good quality early diagnosis and intervention for all - Two thirds of people with dementia never receive a diagnosis; the UK is in the bottom third of countries in Europe for diagnosis and treatment of people with dementia; only a third of GPs feel they have adequate training in diagnosis of dementia. – Improved quality of care in general hospitals - 40% of people in hospital have dementia; the excess cost is estimated to be £ 6 m per annum in the average General Hospital; co-morbidity with general medical conditions is high, people with dementia stay longer in hospital. – Living well with dementia in care homes - Two thirds of people in care homes have dementia; dependency is increasing; over half are poorly occupied; behavioural disturbances are highly prevalent and are often treated with antipsychotic drugs. – Reduced use of antipsychotic medication - There an estimated 180, 000 people with dementia on antipsychotic drugs. In only about one third of these cases are the drugs having a beneficial effect and there are 1800 excess deaths per year as a result of their prescription. ’

DH commissioning packs (Landsley 2010) Commissioning packs are tools to help commissioners improve the quality of services for patients, through clearly defined outcomes that help drive efficiency by reducing unwarranted variation in services. – Each pack contains a set of tailored guidance, templates, tools and information to assist commissioners in commissioning healthcare services from existing providers, or for use in new procurements. – Integral to each pack is an evidence-based service specification which ensures that patients are placed at the forefront of the service and are central to decisions about their care. – The specification is non-mandatory and can be adapted to reflect local needs and once agreed with the provider should inform part of a renegotiated contract or form the relevant section of the NHS standard contract. – By bringing together the clinical, financial and commercial aspects of commissioning in one place, the packs simplify processes and minimise bureaucracy. 1. Cardiac rehabilitation – Oct 2010 2. Dementia – March 2011 3. Chronic obstructive pulmonary disease

What happens next… • High likelihood of central pressure for change • Increasingly localised decision-making/ commissioning • What will be the effect of cessation without support? • Interesting times, but never a better chance for possible positive change 1. Use quality improvement mechanisms 3. Provision of specialist input 2. Improve skills in primary and social care

Distribution of DEMQOL scores by CDR score

Money clinical/cost effectiveness

Early intervention for dementia is clinically and cost effective – “spend to save” • 215, 000 people with dementia in care homes -- £ 400 per week • Spend on dementia in care homes pa – £ 7 billion pa • 22% decrease in care home use with early community based care • 28% decrease in care home use with carer support (median 558 days less) • Quality – older people want to stay at home, higher qol at home • Take an additional 220 million pa • Delayed benefit by 5 -10 years – Strategic head needed • Model published by DH • 20% releases £ 250 million pa y 6

Cost effectiveness • The Net Present Value would be positive if benefits (improved quality of life), rose linearly from nil in the first year to £ 250 million in the tenth year. This would be a gain of around 6, 250 QALYs in the tenth year, where a QALY is valued at £ 40, 000, or 12, 500 QALYS if a QALY is valued at only £ 20, 000. Please ignore – not English - economics • By the tenth year of the service all 600, 000 people in England then alive with dementia will have had the chance to be seen by the new services • A gain of 6, 250 QALYS per year around 0. 01 QALYs person year. A gain of 12, 500 QALYS around 0. 02 QALYs person year. • Likely to be achievable in view of the rise of 4% reported from CMS. • Needs only: – a modest increase in average quality of life of people with dementia, – plus a 10% diversion of people with dementia from residential care, to be cost-effective. Banerjee and Wittenberg (2009) IJGP • The net increase in public expenditure would then, be justified by the expected benefits.

Success in quality improvement in dementia requires • Vision • System change • Ambition in scale • Investment • Commitment over time • Leadership

Dementia care pathway – simple, navigable and commissionable primary care Help seeking social care DIAGNOSIS specialist care specialist older people’s mental health services social care community & care homes Acute trusts 1. Encourage help seeking and referral 2. Locate responsibility for early diagnosis and care primary care Peer & voluntary Sector support 3. Enable good quality care tailored to dementia

Thank you!