National Dementia Strategy for England – update for ADI

1. National Dementia Strategy for England – update for ADI Sube Banerjee Professor of Mental Heath and Ageing, The Institute of Psychiatry, King’s College London

2. Bringing it home, the local case - Dementia UK Report simple messages – common and costly Population prevalence (%) of dementia by age • Numbers with dementia700,000 In 30 years – doubling to 1.4 m • UK dementia cost - £17billion pa In 30 years – tripling £51billion pa Knapp et al (2007)

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

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

5. Objectives of the National Dementia Strategy

6. 1. Improving public and professional awareness and understanding

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

8. 2. Good-quality early diagnosis and intervention for all

9. 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

10. 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

11. 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

12. 3. Improved quality care from diagnosis to the end of life

13. Theme 3 - Improving quality of care • O6. Improved community personal support services • generic and specialist – collation of data • O7. Implementing the Carers’ Strategy for people with dementia • make it work for dementia • O8. Improved quality of care for dementia in general hospitals • clinical leads for dementia, specialist liaison teams – collation of data • O9. Improved intermediate care for people with dementia • change in guidance • O10. Housing support, related services and telecare • watching brief • O11. Living well with dementia in care homes • including review of use of antipsychotic medication in dementia • O12. Improved end of life care for people with dementia • making it work for dementia

14. Living well with dementia in care homesReduced use of antipsychotic medication

15. 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

16. 1,098,627 patients 12-month period from 1 April 2007 to 31 March 2008. 10,255 (5.3%) received a prescription for an antipsychotic Estimates for the report 25% people with dementia receiving an antipsychotic 180,000 people with dementia receiving an antipsychotic Treat 1,000 people with BPSD with an atypical antipsychotic for 12 weeks: 91–200 patients with clinically significant improvement an additional 10 deaths; an additional 18 CVAEs, around half of which may be severe; For UK 1,800 deaths per year 1,620 severe CVAEs per year Summary of risks and benefits at a population level of the use of atypical antipsychotics for BPSD in people with dementia

17. Analysis of why • Symptom of underlying system failure in health and social care for people with dementia • 1960s response to a 21st 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

18. Action

19. What happened next… • Not a lot…

20. What makes things happen? commissioning

21. 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 ’

22. 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 ’

23. 60. There have been a number of important developments in the last year within the context of High Quality Care for All that will help PCTs determine how they develop and implement their local plans. These cover the following areas: alcohol; dementia; end of life care; mental health; military personnel, their dependants and veterans; mixed-sex accommodation; people living in vulnerable circumstances; and people with learning disabilities. 62. The National Dementia Strategy will be a comprehensive framework aimed at driving up standards of health and social care services to improve the quality of life and quality of care for people with dementia and their carers. PCTs will want to work with local authorities to consider how they could improve dementia services. 3.30 Nationally, there is a range of tools to assist PCTs and specialised commissioning groups in delivering their priorities as world class commissioners. These include, but are not limited to: the developing National Support teams(NST) for health inequalities, tobacco, alcohol, infant mortality, teenage pregnancy, sexual health, vaccinations and dementia… Operating Framework 2009/10

24. 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.

25. 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.

26. 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 £6m 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 are 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.’

27. 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 £6m 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 are 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.’

28. 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

31. Moneyclinical/cost effectiveness

32. 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 y6

33. Cost effectiveness Please ignore – not English - economics • 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. • 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 per person year. A gain of 12,500 QALYS around 0.02 QALYs per 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. • The net increase in public expenditure would then, be justified by the expected benefits. Banerjee and Wittenberg (2009) IJGP

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

35. Thank you!