We can no longer ignore dementia - The National Dementia Strategy
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.
The policy context underpinning the strategy is outlined in the document and provides a helpful overview and update on important policies for the everyday clinician. The main policies are outlined below and demonstrate repeated important and large scale policies advocating the need for early dementia diagnosis and intervention.
Forget me not (Audit Commission, 2000)
The key findings included only half of GPs believed it important to look actively for signs of dementia and to make an early diagnosis; less than half of GPs felt they had received sufficient training in how to diagnose dementia; poor assessments and treatment, with little joint health and social care planning and working; insufficient supply of specialist home care and lack of information, counselling, advocacy and support for people with dementia and their family/carers. There was very little improvement when reviewing change two years later (Audit Commission, 2002)
National Service Framework for Older People (Department of Health, 2001)
The chapter on mental health advocated early diagnosis and intervention for dementia and recommended that the NHS and local authorities should review arrangements for health promotion, early detection and diagnosis, assessment, care and treatment planning, and access to specialist services. The strategy report notes that a review of the progress of the NSFOP suggests this has had little positive impact on services for people with dementia and their families.
Everybody’s business (CSIP, 2005)
This development guide for integrated mental health services for older adults set out the essentials for a service for older people including memory assessment services to enable early diagnosis of dementia and integrated community mental health teams whose role includes management of people with dementia with complex behavioural and psychological symptoms.
NICE/SCIE clinical guideline on dementia (2006)
The key recommendations from this joint clinical guideline on the management of dementia included: provision of memory assessment services as a point of referral for diagnosis of dementia; integrated working across all agencies; carers support; assessment and treatment of non-cognitive symptoms and behaviour that challenges; dementia care training for all staff working with older people; and, improved care for people with dementia in general hospitals.
Dementia UK report (2007)
One of the main recommendations of this important Alzheimer’s Society report was making dementia an explicit national health and social care priority and the need to improve the quality of services provided for people with dementia and their carers.
National Audit Office value for money study (2007)
This report was very critical of the quality of care received by people with dementia and their carers – the size and availability of specialist Community Mental Health Teams was extremely variable and the confidence of GPs in spotting dementia symptoms was poor and lower than it had been in 2000. The report concluded services were not currently delivering value for money to taxpayers or to people with dementia and their families – too few people were being diagnosed or being diagnosed early enough; early intervention is needed to improve quality of life; and services in the community, care homes and at the end of life are not delivering consistently or cost-effectively against the objective of supporting people to live independently as long as possible in a place of their choosing. The NAO advocated a ‘spend to save’ approach, with upfront investment in services, for early diagnosis and intervention and improved specialist services, community services and in general hospitals resulting in long-term cost savings from transition into care homes and decreased length of hospital stays.
Public Accounts Committee report (PAC, 2007)
The above NAO report was submitted for consideration by the House of Commons Public Accounts Committee and at the committee’s public hearing the NHS Chief Executive and other Department of Health officials were questioned on the NAO’s criticisms and recommendations. Following the hearing the PAC published its own report on dementia services in January 2008. The committee’s comments and recommendations were consistent with those of the NAO report and further echoed earlier reports on the changes that were needed.
Partnerships for Older People Projects (POPPS)
The 2004 government Spending Review provided ring-fenced funding of £60 million (£20 million in 2006/07 and £40 million in 2007/08) for councils with social services responsibilities to establish locally innovative pilot projects in partnership with PCTs and the voluntary, community and independent sectors. The key purpose of the pilots is to deliver and evaluate approaches aimed at creating a sustainable shift in resources and culture towards early intervention and thereby deliver improved outcomes for older people. Across the country, 29 pilot sites have been established and are delivering a wide range of interventions, including in some pilots older people’s mental health services, aimed at addressing the spectrum of need from emerging mental health needs such as anxiety and depression through to dementia and the early stages of Alzheimer’s disease.
The Dignity in Care Campaign
This campaign was launched in November 2006. Its aim is to put dignity at the heart of care services, and the role of Dignity Champion has been created to help achieve this. These champions come from many different sectors and professions, including older people themselves and carers, and speak up for dignity, challenging practices that are inadequate and working with health and social care organisations to improve the experience of older people (see www.dignityincare.org.uk).
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:
· Improving awareness of dementia
· Early diagnosis and intervention
· High quality care and support
The strategy seeks to target awareness and improved information via a public education campaign. The underlying premise being that people with dementia and carers are prevented from accessing diagnosis and treatment by a cycle of stigma and misapprehension occurring amongst both the public and health professionals. A second theme focuses on the workplace and making dementia a part of core professional and vocational training. The proposal is wide ranging with suggestions to target major employers and bodies such as utilities companies, financial services companies and transport providers.
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
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
Deficits in quality of care have been identified across the board and in almost every area from diagnosis to end of life care. The strategy focuses on four settings where the greatest need has been identified: general hospitals, home care, intermediate care and care homes.
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
Surprisingly this is the shortest section of the consultation document. A detailed implementation plan is due to be published by the Department of Health following the consultation this October (2008). Little detail is offered with regard to how the strategy will be delivered. The main themes outlined in the consultation document include:
- The need to identify current dementia services and to monitor progress of the National Dementia Strategy over time.
- The need to expand the workforce if new and improved services are to be delivered.
- Plans for a ministerial summit with the purpose of considering a programme of dementia research. This would be followed by a Department of Health strategic review of national dementia research.
- The need for support from the Department of Health to implement the strategy. The Department will be considering how best to provide leadership with a probable focus on help to commissioners, identifying levers/ incentives to improving dementia care, encouraging change in service provision and encouraging development of clinical networks to support service improvement.
- The need to consider investing in new models of supported housing and assistive technology. Furthermore how traditional and emerging models of long term care will support the increasing numbers of people with dementia needs to be addressed.
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
As ever finances and economics of large scale and national policies and developments is vital to address and unavoidable when discussing healthcare and intervention in this way. The strategy report analyses the clinical and health economic case for early diagnosis and intervention services in dementia. In doing so it provides an in depth overview of the size and enormity of the problem both currently and in the future – the bottom line being that establishing enhanced dementia services would lead to reduced residential/nursing care and overall savings in public expenditure.
The enhanced diagnostic and intervention services for dementia would cost an estimated extra £220 million per year nationally and would consist of:
- establishment of a national network of memory services;
- support for existing community mental health teams for older people; and
- enhancement of social services for older people with mental health problems.
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?
Dementia is predominantly a disorder of later life, with 98% of cases occurring in those over the age of 65 – its incidence and prevalence rise exponentially with age. The prevalence rises from around 1% at age 65 to 35% at 85. Dementia also has profound negative impacts on family members who provide the majority of all care. Family carers of people with dementia are often old and frail spouses and often have high levels of carer burden, depression, physical illness, and diminished quality of life. Whilst dementia is a terminal disorder, people may live with it for 7–12 years after diagnosis. The report quite rightly reframes the challenge as being how to enable people with dementia and their carers to live well rather than badly with dementia and maximising quality of life.
What is the size and cost of the challenge of dementia?
The Dementia UK report provides the best available estimates for dementia prevalence, cost and population projections. Currently there are 570,000 people with dementia in England which costs the UK economy £17 billion per year. With population ageing, in just 30 years it is estimated that: the numbers with dementia will double; and the costs of dementia will treble; such increases are likely to be unsustainable by the current funding system which will need to radically change in particular to deal primarily with the rise in dementia (see Curtice, 2008b, for a review of the Kings Fund Report analysing the future of funding for mental health care in the next two decades).
Why is early diagnosis and intervention important?
The report notes that literature strongly points to the value of early diagnosis and intervention to improve quality of life and to delay or prevent transitions into care homes. According to the best estimates available in the Dementia UK report care home placement costs the UK £7 billion per year with two-thirds paid by social services and one-third by older people and their families themselves. Data suggest that early provision of in-home support can decrease institutionalisation by 22%.
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 outlines the problem is that, in current systems, only around 30% of people with dementia have a formal diagnosis made, or contact with specialist services, at any time in their illness. Such diagnosis and contact often only occurs late in the illness and in crisis, when the opportunities for harm prevention are limited. If dementia is not diagnosed early, then the person with dementia and their family carers are denied the possibility of planning for their future or of availing themselves of the help, support and treatments (social, psychological and pharmacological).
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
The report suggests investment needed to establish early diagnosis and intervention services in all PCTs in England would consist of (and note that the system will not work without all elements being commissioned together):
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. CMHTs are the mainstay of dementia health care in the UK, providing individualised intervention for people with dementia and their family carers in their own homes. These teams need to have the capacity to work with people seen in the first instance by the early intervention teams mentioned above, but who either immediately or later in their illness require more complex and assertive models of care. The capacity to provide this is not available within these teams at present and the memory services mentioned above are not constructed to provide such care. CMHTs will continue to look after those with the most complex and severe problems in dementia (as well as those with schizophrenia, depression, mania and other mental disorders in later life) and will continue to provide a diagnostic service to those referred who need their input. They are the complementary means by which much institutionalisation will be prevented or delayed and quality of life can be provided. Most people with dementia will not need their input, but for those that do their skills are vital. The estimated cost for an average PCT to uplift CMHTs (with both health and social care staff) serving a population of 50,000 over-65s is £460,000 per year equating to £70 million per year nationally.
3) Enhancement of social care services for older people with mental health problems. As with the CMHTs above there will be a knock-on effect of early diagnosis and intervention for generic older people’s social services that are responsible for assessment, and for commissioning and arranging care packages to support people at home, in respite care, in intermediate care and in the transition to residential care where necessary. Social services departments do not map exactly onto PCTs, and their funding is differently determined. Funding for social care staff is included in the above projections; the report estimates that further social service staff would be needed per average PCT population. The estimated cost for an average local authority with adult social services responsibilities would be £360,000 per year, equating to £55 million per year nationally.
‘Stock and flow’ of care home residents
The best estimate is that some 215,000 people with dementia in England are currently resident in care homes. The report outlines an important issue in that an unknown number will be being supported at home by families and friends – with or without the help of formal social care services. Around 85,000 people with dementia enter care homes in England every year (the assumption is that they spend on average two-and-a-half years there). In the absence of other changes, these numbers could be expected to rise by around 1.5% per year due to demographic pressures.
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
Publicly funded residents account for two-thirds of the older people in care homes, hence delayed or reduced admissions to care homes would result in substantial public cost savings. The report using modelling techniques suggests that 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 £120 million in year 10. A 20% stock reduction translates into cost savings of around £95 million in year 4, rising to around £245 million in year 10.
Savings for privately funded care home residents
A third of care home residents are privately funded (by themselves or their families), and delayed or reduced admissions to care homes would predictably result in substantial cost savings to these individuals. However, these savings are partially offset by the need for councils to provide home care support to those who are eligible for publicly funded home care, by individual user contributions to home care costs and by private home care costs for those who are not eligible for publicly funded home care. The savings are further offset by the general living costs of people who are cared for in the community.
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
Overall, savings accruing to public funds and private individuals are shared fairly evenly between both parties (ie a 50% split), and increase as the numbers of people prevented from entering care homes increases over the 10-year period. Total annual savings to society from 6%, 10% and 20% reductions in the numbers of people with dementia entering care homes amount to around £150 million, £245 million and £490 million respectively by year 10.
An ambitious but do-able scope?
The consultation document encouragingly sets out a wide and comprehensive scope. It will be interesting to see the responses to the draft strategy from other professional and key stakeholder groups. The strategy implicates many professional areas and sectors in the achievement of its aims and outcomes. Integration of social and health care services with mental health services has been an ongoing challenge despite the obvious necessity for close and joint working. However, realistically this will pose challenges regarding roles and differing or even competing priorities. Currently there are few solid or embedded interagency relationships between services to build upon on a national level.
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?
Will this vital document and process be yet another false dawn and be toothless overall to the future of dementia care? It certainly should not be. Yet again with issues of this huge scale and enormity the real issue is of moving from visionary rhetoric to the reality of clinical and real life practice. The intentions of the consultation are to be applauded, but the language of the document is diplomatic and vague at times with choice words such as ‘might’, ‘suggest’, ‘could’ and ‘local discretion’ (implying development services may be determined by the existing resources/personnel rather than an uplift and investment in services – again potentially a recipe for perpetuating the ‘postcode lottery’, inequity of services and the risk of ‘unsexy’ dementia services still being held as a low priority). Although such language might be appropriate for the consultation document we would hope the final strategy has more ‘teeth’ than the many well-meaning documents that have preceded it.
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?
It is difficult to see how the Department of Health will produce a realistic and achievable timeframe by October when the current level of service provision is largely unknown. Hopefully the final strategy document will seriously take on board and embroider feedback from the (relatively short) consultation period – the consultation process not merely being window dressing for a strategy that is already more-or-less formed at department/governmental level. It will be interesting to see how the draft differs from the final national dementia strategy.
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.
The blindingly obvious weight of evidence (in the form of repeated high-level publications reiterating the same advice) for enhanced dementia diagnosis, treatment and care underpinning the strategy makes one wonder why on earth it has taken so long for the government to grasp the proverbial dementia nettle and finally arrive at a national dementia strategy.
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 and Dr Martin Curtice
Birmingham and Solihull Mental Health Foundation Trust
- All Party Parliamentary Group on Dementia (2008). Always a last resort. London: Alzheimer’s Society.
- Ames, D (1991). ‘Epidemiological studies of depression among the elderly in residential and nursing homes.’ International Journal of Geriatric Psychiatry, 16, 39-44.
- Audit Commission (2000). Forget me not: Mental health services for older people. London: TSO.
- Audit Commission (2002). Forget me not 2002: Developing mental health services for older people in England. London: TSO.
- Comas-Herrera, A., Wittenberg, R., Pickard, L and Knapp, M (2007). ‘Cognitive impairment in older people: future demand for long-term care services and the associated costs.’ International Journal of Geriatric Psychiatry. 22, 1037-45.
- Care Services Improvement Partnership (CSIP) (2005). Everybody’s business: Integrated mental health services for older adults: a service development guide. London: Department of Health. Gateway Reference: 5637.
- Commission for Social Care Inspection (2006). Time to care: An overview of home care services for older people in England. London: CSCI.
- Curtice, M (2008a) Supporting carers before, during and after death. Journal of Dementia Care. Due for publication September 2008.
- Curtice, M. (2008b) Big Business: The King’s Fund report – ‘Paying The Price: The cost of mental health care in England to 2026’. British Geriatrics Society Newsletter. 17: 33-36.
- Department of Health (2001). National Service Framework for Older People. London: TSO
- Department of Health (2008). Transforming the Quality of Dementia Care. Consultation on a National Dementia Strategy. London: TSO. Gateway Reference: 10024.
- Knapp, M., Prince, M., Albanese, E., Banerjee, S., Dhanasiri, S et al (2007). Dementia UK: The full report. London: Alzheimer’s Society.
- Macdonald, AJ., Carpenter, GI., Box, O et al. (2002). ‘Dementia and use of psychotropic medication in non “elderly mentally infirm” nursing homes in South East England.’ Age and Ageing, 31, 58-64.
- Margallo-Lana, M, Swann, A, O’Brien, J, Fairbairn, A, Reichelt, K, Potkins, D, Mynt, P and Ballard, C (2001). ‘Prevalence and pharmacological management of behavioural and psychological symptoms amongst dementia sufferers living in care environments.’ International Journal of Geriatric Psychiatry, 16, 39-44.
- Metcalfe, S. & Curtice, M. (2008) Always the last resort: antipsychotic prescribing in care homes. British Geriatrics Society Newsletter. 17: 9-13.
- National Audit Office (2007). Improving Services and support for people with dementia. London: TSO.
- National Institute for Health and Clinical Excellence/Social Care Institute for Excellence (2006). Dementia: Clinical guideline. London: NICE/SCIE.
- NICE/SCIE (2006). Dementia: Supporting people with dementia and their carers in health and social care. London: TSO.
- PAC (2007) available at www.publications.parliament.uk/pa/ cm200708/cmselect/cmpubacc/228/22802.htm
- Rothera, I, Jones R, Harwood, R et al (2008). ‘An evaluation of a specialist multiagency home support service for older people with dementia using qualitative methods.’ International journal of Geriatric Psychiatry, 28, 65-72