Dr David Anderson (left) and Dr Nadarajah Jehaanandan outline the NICE quality statements for dementia and the measures that are needed to achieve them

  • Dementia imposes a significant economic burden—twice as costly as cancer and accounting for two-thirds of mental health service costs
  • Ten statements make up the NICE quality standard for dementia
  • Early diagnosis will be key in achieving Statements 2, 3, 4, 5, and 6
  • Although screening tests may be a useful aid to detect dementia they are not diagnostic tests and should prompt further history taking and examination
  • Primary care requires easy access to specialist memory services to aid referral of suspected dementia cases
  • Staff involved in the care of dementia need to be appropriately skilled
  • People with dementia and their carer(s) should:
    • have the opportunity to discuss and make decisions
    • receive verbal and written information
    • receive an assessment of their needs
  • Personalised care plans should be provided to people with dementia
  • People with dementia who develop non-cognitive symptoms should be offered an assessment at the earliest opportunity
  • Palliative care needs are an important aspect of dementia care.

Dementia is a clinical syndrome of progressive global cognitive impairment usually resulting from irreversible degenerative brain disease. It affects over 800,000 people in the UK and because of an ageing population, this figure is likely to double over 30 years. Dementia costs the UK economy £23 billion per year; it is twice as costly as cancer, three-times more than heart disease, four-times more than stroke, and has an economic impact greater than cancer and heart disease combined.1 Dementia accounts for two-thirds of all mental health service costs (this includes combined direct costs to healthcare and social care services and the cost of indirect informal care);2 this figure is forecast to approximately treble by 2050.3 Around 98% of dementia cases will develop after the age of 65 years and risk increases rapidly with age thereafter.3

Development of the NICE quality standards

NICE quality standards were born from a recommendation in the NHS Next Stage Review report, High quality care for all.4 Each standard is presented as a set of specific, concise statements that act as markers of high-quality, cost-effective patient care covering the prevention and treatment of different diseases and conditions. They are derived from NICE guidance and NHS Evidence-accredited sources, and assess clinical effectiveness, patient safety, and patient experience. Each set of quality standards is designed to be cost neutral as far as possible and is accompanied by a statement to measure compliance.5

NICE quality standards are developed by an invited Topic Expert Group, and the standards are then opened for consultation and tested in the field.5,6 The quality standards approach was piloted in 2009 in four areas: dementia, stroke, venous thromboembolism, and specialist neonatal care.

This article attempts to relate the quality standard for dementia to clinical practice and to outline its implications for primary care.

Quality standard for dementia

The quality standard for dementia was published in 2010 (see Table 1, below)7 and is important to primary care for two reasons: firstly, so much of dementia care will be initiated and coordinated by primary care teams and secondly, the standard is intended for use by the NHS Commissioning Board to inform on developments of an outcome framework for GP commissioning consortia and associated incentives for high-quality commissioning. Dementia services are included in the revised NHS Operating Framework as new commitments.8

Table 1: NICE quality standard for dementia7
Number Quality statements
1 People with dementia receive care from staff appropriately trained in dementia care.
2 People with suspected dementia are referred to a memory assessment service specialising in the diagnosis and initial management of dementia.
3 People newly diagnosed with dementia and/or their carers receive written and verbal information about their condition, treatment, and the support options in their local area.
4 People with dementia have an assessment and an ongoing personalised care plan, agreed across healthcare and social care that identifies a named care coordinator and addresses their individual needs.
5 People with dementia, while they have capacity, have the opportunity to discuss and make decisions, together with their carer(s), about the use of:

 

  • advance statements
  • advance decisions to refuse treatment
  • Lasting Power of Attorney
  • Preferred Priorities for Care.
6 Carers of people with dementia are offered an assessment of emotional, psychological, and social needs and, if accepted, receive tailored interventions identified by a care plan to address those needs.
7 People with dementia who develop non-cognitive symptoms that cause them significant distress, or who develop behaviour that challenges, are offered an assessment at an early opportunity to establish generating and aggravating factors. Interventions to improve such behaviour or distress should be recorded in their care plan.
8 People with suspected or known dementia using acute and general hospital inpatient services or emergency departments have access to a liaison service that specialises in the diagnosis and management of dementia and older people’s mental health..
9 People in the later stages of dementia are assessed by primary care teams to identify and plan their palliative care needs.
10 Carers of people with dementia have access to a comprehensive range of respite/short-break services that meet the needs of both the carer and the person with dementia.
National Institute for Health and Care Excellence website. Quality standard for dementia. Reproduced with kind permission. Available at: https://www.nice.org.uk/guidance/qualitystandards/dementia/dementiaqualitystandard.jsp (accessed 3 February 2011)

Early diagnosis and intervention (Statements 2, 3, 4, 5, and 6)

The foundation of the National Dementia Strategy,9—the agenda for change in England—is early diagnosis and intervention that create opportunities for patients and carers to influence care, improve quality of life, and defer transition to 24-hour care, ultimately reducing cost.10 Early diagnosis will be key to achieving Statements 2, 3, 4, 5, and 6.

Early intervention will depend on better case identification in primary care followed by a full assessment for diagnosis and development of a personalised care plan by a specialist memory service; this will ensure that carers receive an assessment of need and information is provided to both the patient and carer. The personalisation of care plans is crucial and requires knowledge of the individual and their particular circumstances. Early diagnosis allows the person with dementia to be fully involved in this process and information promotes self-help.

Even though the majority of GPs believe that early diagnosis is important, only one-third to a half of people with dementia receive a formal diagnosis; the UK performance on diagnosis and access to treatment is in the bottom third in Europe, with a delay in diagnosis that is almost twice as long in the UK as some other European countries.11 Conversely, up to 30% of people referred to a memory service have no illness.10

Detection of early dementia is not always easy. To make matters more difficult a GP would only expect a small number of new cases of dementia in their practice each year. The incidence of 9/1000 people over the age of 65 per year12 predicts only 2–3 new cases from a practice list of 2000. A number of brief cognitive screening tests are available to aid detection, including the:13–18

  • Mini Mental State Examination (MMSE)
  • General Practitioners Assessment of Cognition (GPCOG)
  • 6-item Cognitive Impairment Test (6CIT)
  • Abbreviated Mental Test Score (AMTS)
  • Mini-Cog Assessment Instrument (MAI)
  • Memory Impairment Screen (MIS).

However, healthcare professionals who use these screening tests need to understand their role and limitations and that diagnosis involves more than the result of a simple screening test.19 Simply screening all older people with a test or relying totally on a single screen positive test without a broader consideration of patient history and sources of test errors would be neither a reliable way of detecting early cases nor a sound basis on which to refer to memory services.20 Other barriers to early diagnosis also need to be overcome, such as insidious onset, confounding co-morbid disorders and personality characteristics, and a reluctance from the healthcare professional to diagnose an incurable condition.21

To meet these statements, primary care teams will need to increase their knowledge and skills to deliver improved detection of early disease and will require easy access to specialist memory services. A clear dementia care pathway should be agreed between primary and secondary care services.

Skilled workforce (Statement 1)

Statement 1 applies to all professionals involved in the care of people with dementia. This is a major challenge as the knowledge and skills gap is considerable. In 2006, only 31% of GPs considered that they had received sufficient basic and postgraduate training to diagnose and manage dementia, and over 40% lacked confidence to make such a diagnosis.17 An online survey of GPs found the average score on an eight-question dementia knowledge quiz was less than 50% and that this had not changed since 2004.21

The lack of dementia skills in the social care workforce is a serious concern and of considerable proportion.22,23 This will impact on the demands made of primary care as it will lead to an increased demand on GP time, pressure to prescribe pharmacological solutions, and increased pressure to refer patients to hospital.

The lack of dementia skills also extends to hospital staff:

  • 54% of general hospital nurses report receiving no training in dementia and 33% insufficient training24
  • 77% of carers express dissatisfaction with nurses’ understanding of dementia24
  • 95% of hospitals have no mandatory dementia awareness training25
  • 77% of hospitals have no strategy for dementia skills development.25

A Department of Health advisory group is currently considering the dementia training and skills gap in the workforce. Achieving Statement 1 is likely to be critical to achieving many of the other standards.

Non-cognitive symptoms (Statement 7)

Over 90% of people with dementia will develop behavioural and psychological symptoms (BPSD) (see Table 2, below) at some point in the course of their illness and these are an important cause of carer distress and a predictor of transition into full-time care, although they are often transient and reversible.27 Statement 7 focuses on early assessment and intervention of these non-cognitive symptoms.

Following publication of the National Dementia Strategy, the Department of Health produced guidance on the need to reduce prescribing of antipsychotic drugs to people with dementia.28 These drugs are usually prescribed in response to reported BPSD and GPs will frequently be the first to be confronted with these symptoms and may be put under considerable pressure to prescribe antipsychotic drugs. The Department of Health guidance arose from evidence that these drugs are overprescribed, are continued beyond the point at which they are clinically indicated, and present significant hazard to patients while benefiting few individuals (see Table 3, below). The recommendations create a national agenda for change that includes primary and secondary care services collaborating on an agreed programme to reduce prescribing by 66% over 3 years.28 This is one of four areas of focus in the implementation of the National Dementia Strategy.29

The NICE and Social Care Institute for Excellence guideline on dementia makes it clear that antipsychotic drugs should only be considered if symptoms are severe, distressing, and create risk for the patient or other individuals, and non-pharmacological approaches have failed or are deemed inappropriate.30 A range of non-pharmacological interventions are recommended although the evidence base for many of these is poor.

In addition to non-pharmacological approaches, other psychotropic medications may be applicable. For example, depression is more common in people with dementia and may manifest as behavioural symptoms in people with more severe dementia; these symptoms could be treated with antidepressants.19

Early assessment of people with dementia to define and understand aetiology of the non-cognitive symptoms that are expected in Statement 7 should lead to more rational interventions and less dependence on an antipsychotic drug response. The measurement of success for this quality statement is 0% prescribing of antipsychotic drugs for people with dementia who only manifest mild or moderate BPSD.7

Table 2: Behavioural and psychological symptoms of dementia26
Aggression Agitation Psychosis Mood disorders
  • Verbal insults
  • Shouting
  • Hitting
  • Biting
  • Pushing
  • Kicking
  • Throwing objects
  • Restlessness
  • Pacing
  • Excessive fidgeting
  • Abnormal vocalisation
  • Shadowing
  • Disrobing
  • Paranoid delusions
  • Hallucinations
  • Depression
  • Apathy
  • Elation
  • Social isolation
  • Suicidal ideation
Table 3: The use of antipsychotic medication for people with dementia28

Treating 1000 people with behavioural and psychological symptoms of dementia with an atypical antipsychotic for 12 weeks would result in:

  • an additional 91–200 people with behaviour disturbance showing clinically significant improvement in these symptoms
  • an additional 10 deaths
  • an additional 18 cerebrovascular adverse events, around one half of which may be severe
  • no additional falls or fractures
  • an additional 58–94 people with gait disturbances.

General hospitals (Statement 8)

Although Statement 8 refers to general hospitals, primary care could have a profound influence on the general-hospital problem. Approximately 30% of people aged over 65 years admitted to general hospitals have co-morbid dementia and this will be an independent predictor of poor outcome.31 Around 50% of these cases will not have previously been diagnosed.32

People with dementia can decline rapidly in hospital, have an increased length of stay, and are more likely to be discharged to care homes.25 They are three-times more likely to die during an admission, with 24% of those with severe dementia dying before discharge.32 Yet, the reason for up to 40% of these medical admissions may be an ambulatory care sensitive condition that would not normally require hospital treatment—most commonly chest and urine infections and falls.24,32 There is a clear opportunity for primary care teams with more direct support from secondary care services in the community to significantly influence this situation by preventing unnecessary hospital admission. If diagnostic rates in the community improved, fewer people would enter hospital without their dementia being known and this may improve care and outcome.

Late stages of dementia (Statements 5, 9)

As dementia usually represents a terminal disease, a palliative care approach has merit. Unfortunately, evidence suggests that people with dementia are less likely to receive palliative care.33 Early diagnosis of dementia is an opportunity to address end-of-life decisions with the person while they are still able to express their wishes (Statement 5), with primary care teams then leading the assessment of palliative care needs in later stages (Statement 9).

Most people with dementia who survive to the severe stages will be managed in care homes. End-of-life plans involving carers that will provide for a dignified and comfortable death and avoid unnecessary admission to hospital can be agreed. A recent study found that 22% of hospital admissions with dementia were admitted from care homes.32

A more rational approach to primary care and care-home coordination is the concept of single practices being responsible for particular care homes, which would create greater consistency regarding agreed care plans and policy. This process should be supported by care-home liaison services from secondary care.

Carers (Statements 6, 10)

The contribution of informal carers is the foundation upon which care plans for people with dementia are built. They are the most important resource available for people with dementia9 and contribute 55% (£12.4 billion) of the annual cost of dementia care.1 Carer involvement from the outset in making early diagnosis and developing care plans is critical, and assessment of their needs fundamental to success (Statement 6). The emotional, psychological, and practical demands of this role are substantial.

Statement 10 identifies the need to access respite services that can be provided in a number of ways; a range of practical and emotional supports for carers will be necessary throughout the course of caring for those people with dementia.

The progressive nature of dementia creates a changing clinical state; this means that care plans and assessment of both the needs of the person with dementia and their carers have to be constantly reviewed and adjusted.

Conclusion

The NICE quality standard for dementia is challenging as it should be. It will be used in performance management, and primary care will be at the heart of delivering and commissioning these services. As the diagnosis and management of dementia will involve a range of services, primary care will need to be part of a network that provides easy access, clear pathways, and cost-effective care underpinned by a more highly informed and skilled dementia workforce. A network approach of local providers agreeing local solutions will be needed.

The seriousness of dementia in human and financial terms in the context of an ageing population has made this condition a national priority. Evidence indicates that delivery of the National Dementia Strategy and achieving the quality standard for dementia will make a substantial impact on current deficiencies in both quality of care and cost effectiveness.

NICE implementation support materials

The following materials are available from the NICE website (www.nice.org.uk) to support implementation of the quality standard for dementia.

Patient information

This document is a summary of the quality standard for dementia. It is written for people with dementia in England and their families and carers but it may also be useful for anyone with an interest in the disease.

Cost impact and commissioning assessment

This assessment covers the possible cost impact and implications for commissioners and service providers of implementing the quality standard for dementia.

CG42 Dementia: slide set

The slides provide a framework for discussing the NICE guideline on dementia with a variety of audiences and can assist in local dissemination. This information does not supersede or replace the guidance itself.

CG42 Dementia: audit support

Audit support has been developed to support the implementation of the NICE guideline on dementia. The aim is to help NHS organisations with a baseline assessment and to assist with the audit process, thereby helping to ensure that practice is in line with the NICE recommendations. The audit support is based on the key recommendations of the guidance and includes criteria and data collection tools.

Memory assessment service: commissioning guide

This commissioning guide provides support for the local implementation of NICE clinical guidelines through commissioning, and is a resource to help healthcare professionals in England to commission an effective memory assessment service for the early identification and care of people with dementia.

Social Care Institute for Excellence: dementia gateway

This resource contains information for practical tips, tools, and activities for professionals who work with people affected by dementia in nursing, residential, or domiciliary settings.


  • Dementia is one of the first topics to be covered in the NICE commissioning guides and quality standards
  • 150 quality standards are promised over the next 5 years
  • Evidence of achievement against the statements will form part of the commissioning outcome framework against which GP consortia will be judged in the future
  • Performance bonuses paid to consortia will depend on this achievement
  • GP consortia should now plan with PCTs to specify contracts with mental healthcare providers to include performance measures against the quality standard for dementia
  • It will be vital to define who is responsible for preparing and updating the ´care plan´ for people with dementia and their carers
  • To fulfil the quality standard, commissioners could seek contracts with primary care providers to ensure such care plans—the QOF currently only requires a face-to-face review (Indicator DEM 2), but not a care plan as such.
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  3. Alzheimer's Society. Dementia UK: the full report. London: Alzheimer's Society, 2007. Available at: alzheimers.org.uk/site/scripts/download_info.php?fileID=2
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