United Kingdom (England)
2012: National Dementia Strategies (diagnosis, treatment and research)
Background information about the National Dementia Strategy
Status and historical development of the National Dementia Strategy
The National Dementia Strategy for England is current.
Up until 2007 dementia was not recognised as a priority by government. The Older Person’s National Service Framework included a standard on mental health, which referenced dementia.
Alzheimer’s Society produced a report in 2007 called Dementia UK which highlighted the costs of dementia and the projections of the number of people who will have dementia in the future. The National Audit Office published a report in the summer of 2007 which concluded that dementia services were not delivering value for money to taxpayers, nor to people with dementia and their families. This report made recommendations on improving early diagnosis and early intervention, improving the management of support and services in the community. This was followed by a report from the Public Accounts Committee in January 2008 into improving services and support for people with dementia concluded that, despite the significant financial and human impact of dementia, the Department of Health was not giving dementia the same priority status as cancer and coronary heart disease.
Due to these key events, there was growing interest from the public, government, policy makers and the NHS in dementia. The Minister for Care Services at the time, Ivan Lewis MP, responded with a commitment to develop a National Dementia Strategy.
Duration of the National Dementia Strategy
The Strategy officially started in February 2009 and runs for five years. Following a change in government, The Prime Minister’s Challenge on Dementia goes faster and further to deliver the aims of the Strategy by 2015.
How the National Dementia Strategy is funded
The Strategy received funding of £150 million during the first two years. This funding was allocated to Primary care Trusts, although the money was not ring-fenced. The All-Party Parliamentary Group on Dementia carried out an inquiry in 2010 into how the money had been spent. The subsequent report A misspent opportunity found that nearly two-thirds of Primary Care Trusts had not allocated their Strategy funding. A number of Primary Care Trusts said that they were unable to disaggregate their National Dementia Strategy funding from baseline or other funding.
The Strategy’s implementation was largely to be funded through efficiency savings, for example reducing unnecessary use of acute hospital beds, and re-directing this to other areas (such as early intervention services). However, this is dependent on many factors and is very difficult to achieve.
Provisions or procedure for implementing the Strategy
The Strategy states that implementation has to be discussed and decided in partnership with the NHS, local authorities and other key stakeholders. Details should be determined locally and, where necessary, the Department of Health plays an enabling role. This means that there are some national levers, such as the NHS Operating Framework, which sets out the priorities for the NHS for the coming year. The 2012/13 states that commissioners will be expected to place greater demands on providers around quality of dementia care and there is a target on increasing diagnosis of dementia in hospitals. Nevertheless, decisions around improving dementia care and support are made and accounted for locally.
General Practitioners (GPs)
It should be the role of GPs to identify individuals who they think show symptoms of dementia. GPs should then refer their patient on to a specialist assessment service for a diagnosis. This is the start of the pathway for a timely diagnosis of dementia and once diagnosed, to receive the care and support people with dementia need.
Primary Care Trusts (PCTs)
Primary Care Trusts are responsible for commissioning suitable services. Specialist services need to be commissioned to deliver good-quality early diagnosis and intervention. The Croydon Memory Service Model was tested in a pilot run by the Department of Health in 2007 and was found to be successful in the evaluation.
Following a diagnosis, people with dementia need to access high-quality information and will often seek advice on accessing care and support. The Strategy recommends that PCTs commission a dementia adviser to act as a single point of contact for people once they have received a diagnosis. However, the Strategy also states that there is a need for demonstrator sites and evaluation of service provision prior to country-wide implementation.
Home care providers
Successful commissioning is central to improving home care services for people with dementia. Home care can be provided by local authorities or privately. The Strategy recommends the establishment of an evidence base for effective specialist home care services and then commissioners can implement best practice based on the evidence.
The responsibility for improving the quality of care for people with dementia in general hospitals lies with hospitals themselves. The Strategy states that hospitals should identify a senior clinician within a general hospital to take the lead for the improvement of dementia in the hospital. Hospitals need to develop an explicit care pathway for the management and care of people with dementia in hospital, led by the senior clinician. In addition, specialist liaison older people’s teams should be commissioned to work in general hospitals.
Care home providers (local authority or private) are responsible for implementing this objective. The Strategy states that this objective can be delivered through:
•the identification of a senior staff member within the care home to take the lead for quality improvement in the care of dementia in the care home;
•the development of a local strategy for the management and care of people with dementia in the care home, led by that senior staff member;
•only appropriate use of anti-psychotic medication for people with dementia;
•the commissioning of specialist in-reach services from older people’s community mental health teams to work in care homes;
•readily available guidance for care home staff on best practice in dementia care.
Procedure for monitoring progress made in achieving the goals set
The National Audit Office took a key role in monitoring progress. A report from the National Audit Office in January 2010 reviewed implementation of the Strategy and found that implementation had been slow to get started. This was followed by a Public Accounts Committee report in March 2010. In light of these, the Department of Health published a revised and focused implementation plan for the Strategy, identifying four priority areas for work in the 2010/11 period:
•good-quality early diagnosis and intervention for all;
•improved quality of care in general hospitals;
•living well with dementia in care homes;
•reduced use of antipsychotic medication.
The review also described the Department of Health’s work to identify key outcomes that people with dementia expect by the end of the term of the Strategy and develop measurable indicators across health and social care.
The NHS Operating Framework is published annually and sets out the priorities, direction and vision for the forthcoming year. The 2010/11 NHS Operating Framework made dementia a priority. The NHS Operating Framework for 2011/12 outlined that NHS organisations were expected to make progress on the National Dementia Strategy, including the four key priority areas outlined in the implementation plan. It also underlined the need for joint working with local authorities in improving dementia services and highlights the crucial importance that the NHS help people with dementia and carers understand the range and quality of local services available to them.
The Department of Health also commissioned an audit of the recommendation in the Strategy to reduce the use of antipsychotic drugs. Data on prescriptions of antipsychotics to people with a diagnosis of dementia were extracted from GP practice records in November and December 2011. Only a small number of practices included in the audit chose to opt out, so the data on prescriptions should provide a robust indication of prescriptions of antipsychotics to people with a diagnosis of dementia. However, there are problems with the audit. For example, it is likely that a significant number of people with dementia without a diagnosis who are prescribed antipsychotics were not included.
Following a change of government, it was recognised that the progress of the Strategy was slow, so the Prime Minister made a commitment to drive improvements in dementia care in the Prime Minister’s Challenge on Dementia. Three champion groups have been appointed to consider how to meet the commitments made. These groups will report to Mr Cameron by September with an action plan and then report again on progress in March 2013 (Chidgey, 2012).
Involvement of the Alzheimer association (and/or people with dementia)
Development of the Strategy
Staff from Alzheimer’s Society, people with dementia and carers took part in the three working groups which developed different parts of the Strategy. Over 50 stakeholder events were held in England as part of the consultation exercise. These were attended by over 4,000 individuals. Approximately 600 responses to the consultation document were received. Alzheimer’s Society’s response to the written consultation drew on feedback from 50 people with dementia and 300 carers.
Implementation and monitoring
Alzheimer’s Society holds the Primary Care Trusts, NHS, local authorities and government to account. We do this by:
•carrying out research into how well people are living with dementia and producing reports, such as Dementia 2012: A National Challenge;
•analysing data from the Quality and Outcomes Framework and external audits;
•responding to government consultations on policy issues;
•engaging with parliamentarians in the All-Party Parliamentary Group on Dementia;
•supporting the All-Party Parliamentary Group on Dementia in inquiries, such as A Misspent Opportunity;
•raising awareness of dementia with GPs and the public through our campaigns, such as ‘Worried About Your Memory?’.
•highlighting issues in the media.
Alzheimer association’s overall assessment of the National Dementia Strategy
Alzheimer’s Society believes that the National Dementia Strategy is fundamental to improving the lives of people with dementia. The organisation was heavily involved in the development and supports the recommendations made. Alzheimer’s Society worked with the Prime Minister and Department of Health to produce the Prime Minister’s Challenge on Dementia. This was in recognition that more had to be done to achieve the aims of the Strategy.
Nevertheless, Alzheimer’s Society has continuing concerns over the funding of the Strategy and its implementation.
Diagnosis, treatment and research
Issues relating to diagnosis
Timely diagnosis in the National Dementia Strategy
The Strategy recommends good-quality early diagnosis and intervention for all. This recommendation states that all people suspected of having dementia should have access to a pathway of care that delivers: a rapid and competent specialist assessment, an accurate diagnosis sensitively communicated to the person with dementia and their carers.
The Strategy explains that this can be delivered through the commissioning of good-quality services, available locally, for early diagnosis and intervention in dementia, which have the capacity to assess all new cases occurring in that area.
The Prime Minister’s Challenge on Dementia aims to build on the Strategy and highlights the Government’s commitment to driving improvements in health and care for people with dementia. The Government has committed to working with GPs to identify how best to improve early diagnosis of dementia through improvements in awareness, education and training. It has also committed to provide funding for continual dementia awareness campaigns up to 2015.
The National Institute for Health and Clinical Excellence (NICE) oversees the Quality and Outcomes Framework (QOF), which does not form part of the Strategy. This is a voluntary incentive for General Practitioners, which rewards them for how well they care for patients. The Dementia indicators aim to incentivise GPs to keep a register of all their patients with dementia, have a record of each individuals’ care plan and a record of regular reviews for each patient.
Which healthcare professionals are responsible for diagnosing dementia
GPs can carry out initial examinations and then refer to a specialist secondary service. They cannot give a diagnosis themselves. The diagnosis is made by a specialist consultant such as:
- a neurologist
- a specialist in medicine for older people (geriatrician)
- a general adult psychiatrist
- an old age psychiatrist
GPs tend to offer patients appointments of 10 minutes for routine consultations (Oxtoby, 2010). If patients need longer, it may be possible to book a double appointment. In addition, it is sometimes possible to book a telephone consultation. Such consultations comprise 10-20% of all GPs’ contacts with their patient and according to the Royal College of General Physicians (2012), this figure is rising.
The National Institute for Health and Clinical Excellence (NICE) oversees the Quality and Outcomes Framework (QOF), which does not form part of the Strategy. This is a voluntary incentive for GPs, which rewards them for how well they care for patients. The Dementia indicators aim to incentivise GPs to keep a register of all their patients with dementia, have a record of each individuals’ care plan and a record of regular reviews for each patient.
Type and degree of training of GPs in dementia
The GP curriculum, which is set by the Royal College of General Practitioners, includes two references to dementia, one under care of older people and one under mental health. How this curriculum is then interpreted is up to individual deaneries. There are 14 deaneries in England and 1 for each of Wales, Scotland and Northern Ireland. As such, the training GPs receive in dementia varies depending on where a GP is trained. All GPs will have a basic understanding of the condition, the appropriate assessment tools and how the condition progresses. They will also have an awareness of the treatments available for Alzheimer's disease, and of licensed antipsychotics. Other than this, there is no requirement for further training.
Continuing education is an obligation for GPs, as they must accrue a certain number of Continuing Professional Development (CPD) points in order to pass their yearly review. GPs will usually carry out online learning modules (such as those provided by BMJ Learning), but there is no set curriculum for what they have to study. Study is self-directed, and as such GPs will not necessarily undertake any further training in dementia care.
Required tests to diagnose dementia
The official guidelines for assessment of dementia can be found on the NICE website (please see under “references”. In summary, the recommendations are:
- take a history
- do a cognitive and mental state examination
- conduct a physical examination and other appropriate investigations (e.g. blood and urine tests)
- review medication to identify and minimise the use of drugs which may affect cognitive functioning.
The MMSE is the most commonly used cognitive test, but others are also used, such as the six-item Cognitive Impairment Test (6-CIT), the General Practitioner Assessment of Cognition (GPCOG) and the 7-Minute Screen.
The NICE guidelines further recommend that a diagnosis of the subtype of dementia should be made by healthcare professionals with expertise in differential diagnosis using international standardised criteria. The NINCDS/ADRDA (National Institute of Neurological and Communicative Diseases and Stroke/Alzheimer's Disease and Related Disorders Association) is preferred for Alzheimer’s disease or alternatively the DSM-IV (Diagnostic and Statistical Manual of Mental Disorders, fourth edition) or the ICD-10 (International Classification of Diseases, 10th revision). They also recommend structural imaging to exclude other cerebral pathologies and to help establish the subtype diagnosis (mainly magnetic resonance imaging (MRI) but also computed tomography (CT) scanning. For full details, please refer to their website.
Issues relating to medical treatment
Issues related to medical treatment in the National Dementia Strategy
The Strategy addresses the issue of inappropriate prescriptions of antipsychotic medication, particularly in care homes.
The Prime Minister’s Challenge on Dementia aims to build on the Strategy. The Challenge recommends that the NHS and social care work together with wider partners to reduce inappropriate prescribing of antipsychotic drugs to people with dementia with a view to achieving overall a two-thirds reduction in the use of antipsychotic medication by 2015.
Alzheimer’s Society is part of a call to action on reducing antipsychotic drugs, which is being pushed throughout the NHS. This call to action focuses on ensuring reviews take place and as part of this the Society has produced guides for healthcare professionals and families to inform them about antipsychotics and how regularly they should be reviewed.
National Institute for Health and Clinical Excellence
Although not part of the Strategy, the National Institute for Health and Clinical Excellence (NICE) reviews drug treatments and decides if they offer value for money for the NHS. In 2011, NICE issued guidance that people with Alzheimer’s disease should have increased access to available drugs. NICE also issues guidance on the commissioning of memory services.
Commissioning for Quality and Innovation (CQUIN) are payments designed to drive up the quality of care in hospitals. Hospitals can earn payments if they meet certain CQUIN goals. The first CQUIN payment for dementia has only just been introduced. The CQUIN has three aims:
•to identify people with dementia: members of staff will ask members of the family or friends of a person admitted to hospital if the patient has suffered any problems with their memory in the last 12 months;
•to asses people with dementia: if there is evidence to suggest a problem with their memory, that person will be given a dementia risk assessment;
•to refer on for advice: a referral would be made for further support either to a liaison team, a memory clinic or a GP.
The Prime Minister’s Challenge on Dementia states that from April 2013, the CQUIN payment will be extended to the quality of care delivered to people with dementia.
The availability of Alzheimer treatments
There are currently four drugs for Alzheimer's disease licensed in the UK (Donepezil, Rivastigmine, Galantamine and Memantine), and one drug licensed for the treatment of severe aggression/agitation in people with Alzheimer's disease. One of these drugs, rivastigmine is also licensed for the treatment of Parkinson's disease dementia. There are no licensed drug treatments for other forms of dementia.
Conditions surrounding the prescription and reimbursement of AD drugs
In the first instance, these drugs can only be prescribed by a consultant. A GP will need to refer the person to a hospital for a specialist assessment. A consultant will carry out a series of tests to assess whether the person is suitable for treatment and will write the first prescription, if appropriate. Subsequent prescriptions may be written by the GP or the consultant.
The National Institute of Health and Clinical Excellence (NICE) is the Government body responsible for assessing the cost and clinical effectiveness of drug treatments and producing guidance on which treatments should be funded by the NHS.
Guidance published in January 2011 sets out that anticholinesterase treatments should be available to people in the mild to moderate stages of Alzheimer's disease and that Ebixa (Memantine) should be available for people in the severe stages and for people who are unable to tolerate anticholinisterase treatments. There are no restrictions on the prescription or reimbursement of AD drugs for people living alone or in nursing homes.
Prescription and reimbursement
Yes (also for Parkinson’s disease in dementia)
Initial drug reimbursed if prescribed by
Continuing treatment reimbursed if prescribed by
GP or consultant
GP or consultant
GP or consultant
GP or consultant
NICE diagnostic criteria
NICE diagnostic criteria
NICE diagnostic criteria
NICE diagnostic criteria
10 - 26
10 – 26
10 – 26
10 - 20
Issues related to research in the National Dementia Strategy
The Strategy recommends that there needs to be a clear picture of current research evidence available and where there are gaps in research. It recognises that evidence needs to be available on the existing research base on dementia in the UK and the gaps need to be filled.
The Prime Minister’s Challenge on Dementia aims to build on the Strategy. The Challenge commits to:
•more than double funding for dementia research to over £66 million by 2015. The level of funding for dementia research in 2009/10 was £26.6 million;
•major investment in brain scanning;
•£13 million for social sciences research on dementia;
•£36m funding over five years for a new National Institute of Health Research (NIHR) dementia translational research collaboration to pull discoveries into real benefits for patients. Four new NIHR biomedical research units in dementia and biomedical research centres which include dementia-themed research will share their considerable resources and world-leading expertise to improve treatment and care;
•participation in high-quality research. Offering people the opportunity to participate in research will be one of the conditions for accreditation of memory services.
Alzheimer’s Society (2012), the Mini Mental State Examination (MMSE): http://www.alzheimers.org.uk/site/scripts/documents_info.php?documentID=121
BMJ Learning: http://learning.bmj.com/learning/home.html
Chidgey, A. (2012), The Prime Minister’s dementia challenge,Dementia in Europe: the Alzheimer Europe Magazine, 11, p.34, Alzheimer Europe
NICE clinical guidelines (CG42: Dementia: Supporting people with dementia and their carers in health and social care: http://publications.nice.org.uk/dementia-cg42/guidance#diagnosis-and-assessment-of-dementia
Oxtoby, K. (2010), Consultation times,BMJ Careers, article consulted online on 25 October 2012 at: http://careers.bmj.com/careers/advice/view-article.html?id=20001044
Royal College of General Practitioners (2012), Information reported in connection with an advertised course: http://www.rcgp.org.uk/courses-and-events/south-england/south-west-thames-faculty/enhance-your-telephone-consultations-and-triage.aspx
Laura Cook, Policy Officer, Alzheimer’s Society
Last Updated: Tuesday 14 May 2013