| BGS
Newsletter Online |
|
| We can no longer ignore Dementia The national Dementia Strategy |
|
| Email your comments Download this document in MSWord format Dementia has long been a neglected area but finally the Government has identified this devastating illness as a national priority. The Dementia UK report (Knapp et al., 2007) indicates that currently there are over 570,000 people living with dementia in England and the number is projected to double in the next 30 years. The estimated cost of dementia care exceeds that of cancer, heart disease and stroke combined. With a doubling in the number of dementia sufferers the associated costs are predicted to treble to over £50 billion a year (Comas-Herrera et al, 2007). In August 2007 a one-year programme was launched to develop a National Dementia Strategy and on 19th June the document Transforming the Quality of Dementia Care was released for public consultation. The consultation period ends on 11th September 2008 following which the Department of Health will develop the final strategy and an implementation plan due for release in October. This article looks at the proposals within the document and the body of evidence they are drawn from. In essence the proposals within the consultation document is the strategy in draft form and as such the terms are used interchangeably throughout this article. We ask whether the Strategy, albeit in embryonic form, can address the inevitable demographic time bomb our nation faces. Policy Context Forget me not (Audit Commission, 2000) National Service Framework for Older People (Department of Health, 2001) Everybody’s business (CSIP, 2005) NICE/SCIE clinical guideline on dementia (2006) Dementia UK report (2007) National Audit Office value for money study (2007) Public Accounts Committee report (PAC, 2007) Partnerships for Older People Projects (POPPS) The Dignity in Care Campaign Wider policy context Putting People First – is a concordat signed by Government departments and organisations. It sets out the Government’s vision for public services to enable people to live their own lives as they wish. It is underpinned by a set of values that includes “ensuring older people with chronic conditions, disabled people and people with mental health problems have the best possible quality of life and the equality of independent living”. It advocates a personalised adult social care system which will need to work for people with dementia as well as those without cognitive impairment, and sets out the agenda to give more choice and control to service users. Our Health, Our Care, Our Say – the Government in a 2006 White Paper made the commitment to extend the availability of direct payments, defined as cash in lieu of social services, to people who lack capacity under the Mental Capacity Act 2005 in the Health and Social Care Bill currently going through Parliament (the policy will allow a direct payment to be made to a ‘suitable person’ who can receive and manage the payment on behalf of the incapacitated person). Carer’s Strategy – this was published in June 2008 and addresses the 500,000 plus family members who care for people with dementia who in turn provide more than £6 billion a year of unpaid care. This strategy implementation will ensure a 10-year plan that builds on the support for carers and enables them to have a life outside caring. National End of Life Care Strategy – this is currently in preparation and the NAO are due to publish a report on end-of-life care in autumn 2008 (end-of-life care for people with dementia is an underdeveloped area needing specific attention. See Curtice, 2008a for a review of palliative care in people with dementia). The draft strategy The clear declared aim of the strategy is to ensure significant improvements in dementia services within 5 years. Reference is made to the challenges that face commissioners given the current low level of service provision to dementia sufferers. The content of the strategy is broad reaching. Everybody’s Business and the NICE/SCIE clinical guideline clearly indicate that dementia care is an issue for the health and social care system as a whole rather than simply being the responsibility of older adult mental health services. This is reflected in the proposals which extend across the entire service sector and boldly dare to venture into education and private industry. Three key areas are identified within the consultation document:
(Figure 1: The vision of the National Dementia Strategy, p24 of the DH "Transforming the Quality of Dementia Care)
The outcomes for the strategy have been identified and are presented as a series of recommendations under the three key areas. There is reference also to delivery of the Strategy. Outcomes Figure 2
Improving awareness With increasing awareness comes the inevitable increased demand for services. Will there be adequately trained staff and plentiful resources and systems available to deal with the assumed initial tide of concerns from the public? Ideally referrals would include dementia sufferers however the system would need to have the capacity to deal with the likelihood of ‘false positives’ and the worried well. Currently there are no curative treatments available for dementia. Clearly with the prospect of exponential increases in prevalence whatever can be done on a preventative front needs to be pursued. Evidence suggests that up to 50% of dementia cases may have a vascular component. The strategy proposes an education element aimed at prevention via the promotion of cerebrovascular health. The report acknowledges that professionals often lack the skills and knowledge to confirm a diagnosis of dementia and are unable or unwilling to adapt their practices to work for people with dementia. Given that people with dementia access all services, awareness of how to work with people affected by dementia is required by all service sectors such as housing, benefits and emergency services. In order to attain a trained and competent workforce the strategy proposes that those responsible for professional and vocational education should ensure that core curriculum and training enables staff to work effectively with people with dementia. More specifically the strategy talks of development of core competencies, quality assurance of training and career structures for dementia care workers and other professionals working with people with dementia. Such wide-ranging intentions would need the full and unwavering support and prioritisation by multiple agencies. Early diagnosis and intervention
(Fig 3 Simplifying the care pathway for dementia p37) The 2007 National Audit Office report estimates that two thirds of people with dementia don’t receive formal diagnosis or have contact with specialist services at any time in their illness. Diagnosis often occurs at a time of crisis and to date early diagnosis has not, to any extent, been embraced or pursued by either primary or secondary care services. The consultation document sets out the case for cost-effectiveness of Early Diagnosis and Intervention (EDI) services. Value is achieved through improving quality of life and by preventing or delaying admissions into care homes. The report suggests a potential saving of hundreds of millions of pounds over a five-year period. The economic analysis (see section below) reflects a ‘spend to save’ approach and highlights that investment in improving quality of services would enable savings on crisis care. The analysis indicates that it would take ten years for the current estimated 600,000 dementia sufferers to be seen; a rate roughly equivalent to the current incidence rate of new cases. It is not clear whether the service would have the capacity to handle screening of the demand generated by information campaigns. The analysis excludes costs uncovered by the diagnostic process and early treatment. These costs include extra investigations, care packages in the community, medication or other health and social care. It is unclear how these costs would be funded. Without a real injection of new resources there is a danger that services will be unable to meet the demand and expectations of the public or carers and people with dementia. The consultation document makes only cursory reference to National ‘support’ for implementation of the strategy, without earmarked resources and perhaps the Dementia Strategy will raise more questions than it answers. Funding issues aside, the strategy details proposals relating to quality of service. The idea of an ‘information prescription’ is introduced whereby dementia sufferers and their carers would be given an individually tailored package of information at the point of diagnosis and as needed. The suggestion is to develop information at a national level that could then be adapted to local situations. This information would need to be delivered by trained individuals who are able to respond to the questions that may be generated. The final proposal in this area relates to continuity of care. To address this issue the strategy proposes the development of ‘dementia care advisers’. The role involves acting as a point of contact for all those diagnosed with dementia to give advice and signposting to other services. This appears to be an attempt to formalise the valuable role played by voluntary agencies alongside health and social services. Unfortunately all too often this is under resourced and over-burdened and the prospect of formal commissioning may address this. High-quality care and support Up to 70% of acute hospital beds are currently occupied by older people (NSFOP, 2001) and up to half may have cognitive impairment. Many of these individuals are undiagnosed and indeed the NAO report found that some general hospitals avoided pursuing diagnosis of dementia due to fears of delaying discharge. Leadership for and ownership of dementia in general hospitals is highlighted in the strategy proposals. Responsibility for quality improvement in dementia care in hospital, development of a care pathway and commissioning of specialist older people’s mental health liaison teams are identified as priorities. Two-thirds of all people with dementia live at home. Following care by family members, home care is the service most involved in supporting people with dementia at home. The Time to Care report (CSCI, 2006) identifies the importance of continuity, reliability and flexibility in home care services. Furthermore evidence is emerging that specialist dementia home care brings benefits to both people with dementia and their carers. Benefits include reduced carer stress and extended capacity for independent living. Complimenting home care is the need for short-term breaks to support families. Again this facility plays an important role in preventing institutionalisation. Health and social care needs change over time and through the course of a dementing illness. PCTs and local authorities should consider joint commissioning of services to reflect individuals’ change in needs. As with the general hospital settings the proposal is that commissioners should lead on development of an integrated pathway of care. Pathways out of hospital often exclude people with dementia thereby denying them access to rehabilitation services that could enable individuals to return home. There is good evidence that people with mild to moderate dementia and physical rehabilitation needs do well with provision of this service. People with severe dementia may need specialist services better geared to meeting their needs. All too often these services are scarce. The strategy proposes that Intermediate care meeting the needs of people with dementia be made available. A third of people with dementia live in care homes. Leadership, the ethos of the care home, staff training and support are identified as crucial to provision of quality care. The strategy suggests that commissioners should factor these elements into performance evaluation and contract monitoring. Up to 75% of residents in care homes have dementia (Macdonald et al., 2002) and an estimated 50% have depressive disorders that would warrant intervention (Ames, 1991). Despite evidence of effectiveness of old age psychiatric intervention current input from mental health services is at best ad hoc. The recent All Party Parliamentary Working Group (2008) on antipsychotics in care homes raised the need for closer review and monitoring of use of these medications in people with dementia (for review of this important report see Metcalfe & Curtice, 2008). The strategy proposes a system of specialist mental health assessment on admission to residential homes followed by regular review thereafter. Whilst the intentions cannot be faulted this raises considerable resource implications for specialist mental health services. Further support to care homes is suggested via in-reach services by pharmacists, dentists, optometry and geriatricians again bringing with it significant resource or restructuring implications for these professions. The final recommendation proposes improved registration and inspection procedures for care homes. Given the high proportion of care home residents with dementia it is suggested that registration requirements might stipulate that care homes provide good quality care for people with dementia. Inspection regimes would include an assessment of the quality of dementia care provided. The document notes that following the NICE/SCIE guidelines, SCIE’s work is now focusing more on the quality of dementia care provided by the independent sector. Mandatory standards with procedures to enforce penalties may be required to underpin desired outcomes. Delivering the National Dementia Strategy
No timeframe for implementation is defined. This is to be outlined following the consultation process. Throughout the document references to 5 and 10-year periods are made but when these are likely to commence and how much is to be achieved remains unclear. The final paragraph makes brief but vitally important reference to the overall cost implications of making the changes outlined in the strategy. The conclusion is that the cost in financial and human terms of not making change is likely to be higher. Clinical and Health Economics The enhanced diagnostic and intervention services for dementia would cost an estimated extra £220 million per year nationally and would consist of:
It is calculated that reduction in the use of residential/nursing care would begin in the fourth year following implementation of the strategy. Who gets dementia and how are they affected? What is the size and cost of the challenge of dementia? Why is early diagnosis and intervention important? The main factors in predicting institutionalisation in people with dementia are behavioural disturbance, hallucinations and depression and older people’s mental health services are specialist and designed to treat these symptoms. The value of carer support is clearly shown by the finding that having a co-resident carer exerts a 20-fold preventative effect on entering a care home. A brief programme of carer support and counselling at diagnosis alone has been demonstrated to reduce care home placement by 28%, with a median delay to placement of 557 days compared with those not receiving the intervention. Services that enable early intervention have been shown to have positive effects on the quality of life of people with dementia and their family carers. What is the problem? The report also notes there is a great deal that can be done to help people with dementia and their carers, and despite the undoubted potential for negative reactions at diagnosis the balance is very much in favour of early diagnosis, and the earlier such intervention is available in the illness the better. All PCTs will be commissioning a number of services which might make the diagnosis of dementia such as GPs, old-age psychiatric community teams, geriatric medicine, and neurology services – current systems are non-prescriptive about where and by whom diagnoses of dementia should be made. The report suggests a marked reluctance on the part of primary care to be directly involved in the diagnosis of dementia for reasons that include: therapeutic nihilism; risk avoidance; concerns about competency; and concerns about resources. The current focus is on the severe and complex end of the spectrum, leaving the issue of early diagnosis and intervention largely unaddressed. The best simple predictor of need for dementia care in a particular population is its age distribution, in particular the number of people over 65 years of age. The next most important factor is the number of care home beds in an area, given that up to 80% of the residents of these institutions have dementia. The 152 PCTs in England vary greatly in size, with the number of over-65s ranging between 14,000 and 220,000. The local level of need will determine the size of the teams needed i.e. in some areas where the population is low, one team might service two or more PCTs; in others where the PCTs are large, two or more teams might be needed to serve different geographical areas within a PCT. Investment needed to establish early dementia diagnosis and intervention services 1) Establishment of a national network of ‘memory services’ for early diagnosis and intervention in dementia – these currently only exist in a very few areas and even then do not have the capacity to see the large number of cases that are in the community. These multidisciplinary and interagency teams would provide people with their diagnosis, so enabling choice and forward planning while people have capacity. They would also provide information, and direct medical, psychological and social help to people with dementia and their family and carers to enable them to set a different, better course in their illness. They would prevent future crises by encouraging more effective and earlier help seeking, and so reduce unwanted transition into care homes. The Department of Health has already piloted this service model with positive results. Start-up costs, including training, are estimated at six months’ running costs for the team. Such services could be provided by older people’s mental health services, geriatricians, neurologists or GPs with a special interest. The report bases costs on a MDT for a population of 50,000 over 65s generating a team working five days a week with flexible hours, processing 600 to 800 referrals per year, and providing diagnoses and direct care and support to those diagnosed with dementia and their family carers. The estimated cost for an average PCT is £600,000 per year, equating to £95 million per year nationally covering the costs of both health and social care staff. 2) Support for existing community mental health teams (CMHT) for older people. 3) Enhancement of social care services for older people with mental health problems. ‘Stock and flow’ of care home residents A reduction of 6% in the number of people with dementia entering care homes (as a result of investment in early diagnosis and treatment services) would translate in time to a reduction of 15,000 in the overall number of care home residents (taking account of demographic pressures). Reductions of 10% or 20% in the number of older people with dementia entering care homes would result in respective reductions of 25,000 and 35,000 in the numbers of people in care homes (the reduction in care home admissions is assumed to commence from the fourth year following the start of a new early diagnosis service, with the resulting cost savings accruing from the fourth year onwards). Savings for publicly funded care home residents Savings for privately funded care home residents A 6% reduction in the number of people with dementia entering care homes translates into cost savings of around £25 million in year 4, increasing to around £75 million in year 10. A 10% reduction translates into cost savings of around £45 million in year 4, rising to around £125 million in year 10. A 20% stock reduction translates into cost savings of around £95 million in year 4, rising to around £250 million in year 10. The cost savings presented in Figure 2 accrue to private individuals. Overall savings to society An ambitious but doable scope? Targeting large organisations, such as utilities companies as part of a referral pathway for members of the public with unrecognised dementing illness is a novel proposal but perhaps also a potential minefield. Health and social care professionals will be well aware of the sensitivities involved in approaching and engaging individuals following information/ concerns from third parties. There will potentially be a significant amount of inappropriate contact and fall-out generated by referrals from non-health and social care workers i.e. false positives or the worried well, and firm and boundaried gate keeping would be necessary to sieve out the real cases so that the system isn’t taking on all and sundry who do not have dementia related problems. Not another toothless document? Any national dementia strategy will implicitly have an impact on the old age psychiatry services and in particular the future role of CMHTs. The introduction of memory assessment services may take away a sizeable amount of ‘routine’ work from CMHTs in the form of dementia referrals, necessitating such teams to review their workload but be an opportunity to be more innovative and branch out into more diverse areas e.g. nursing home in-reach. We fervently support the view, as advocated by the consultation, that specialist old age mental health services currently provide and should continue to provide services to elderly people with a range of mental health needs other than dementia. CMHT resources should not be swallowed up trying to meet the needs of the National Dementia Strategy alone and mental health needs other than relating to dementia should not be swallowed up by the likes of general adult services. The latter would inevitably lead to the downgrading of services to the elderly population. If resource issues are to be addressed the recent trend towards cutting numbers of Old Age Psychiatry Consultants needs to be reversed. Similarly there will undoubtedly be an impact on primary care services and the role of the GP. The consultation document raises the question as to whether GPs need to be involved in the referral process. Although training issues have been acknowledged regarding primary care services it is vital that GPs remain involved and informed regarding their patients. The draft strategy acknowledges the necessity to improve continuity of care. Isn’t one of the fundamental roles of the GP caring for an individual with a holistic approach which requires a full appreciation of the health and social issues they face? Equally the GP may often be the keeper of valuable information specialist services require to carry out their work. Timeframe for implementation? The content of the strategy is the ‘gold standard’ and whilst no-one would deny that such standards should be identified perhaps the reality of what is achievable needs to be determined with reference to the resources available to deliver. Are expectations being raised beyond which can be reasonably met? We hope not as the government has a huge amount to lose if it fails to deliver on this project. Development of adequately trained resources has to be a priority. Current services are already under pressure due to the demographic surge; without careful planning and extra provisions it is inevitable the current system would not cope with the increased demand generated by an awareness campaign let alone new targets on improving services. There are seemingly some omissions in the consultation document (hopefully to be incorporated in the final document) related to dementia care such as continuing care, palliative care, the extension of services for 24-hour availability and crisis intervention services for the older person. Such important issues will be needed to be addressed and considered with the anticipated increase in dementia numbers with a national dementia strategy and the knock-on effect of more older people needing such vital services. The inevitable funding for these services would be an added extra to the projected financial burden. Blindingly obvious We whole-heartedly concur with the draft strategy that if a national dementia strategy fails to be comprehensively and speedily (albeit realistically) implemented the cost in financial and human terms of not making change is likely to be higher than actually implementing it. Really when it comes to dementia services enough is enough; they desperately and deservedly need this national strategy with proper pump-priming and funding and as Ivan Lewis MP and Parliamentary Under-Secretary of State for Care Services says in the foreword of the consultation on the National Dementia Strategy “We can no longer ignore dementia”. Dr Sandie Metcalfe & Dr Martin Curtice References
BGS Newsletter, Oct 2008 |
|