Dr Stephen Iliffe and Professor Jill Manthorpe discuss how the NICE dementia guidance will help with early recognition and assessment and thereby benefit patients and carers
D ementia presents multiple challenges for primary care. Approximately 1 in 20 people in the UK aged over 65 years, and 1 in 5 people over 80 years have some kind of dementia, with similar prevalence rates across the rest of Europe.1 In 1998 it was estimated that there were nearly half a million people with dementia in the UK,2 and this figure is predicted to rise to 1,000,000 by 2025.1
Why the guideline is needed
The prevalence of dementia not only increases with age, alongside that of other disabilities, but it is also a progressive disease process that affects those individuals with the condition, their carers, the wider community, and health and social care providers in an ever-changing variety of ways. Increasingly, it stretches the abilities of GPs and community nurses to understand, empathise, and intervene.
Dementia is often insidious in onset and difficult to diagnose in the early stages, making it a double challenge to primary care workers. Early diagnosis is important, as this allows those with dementia and their family networks to engage with support services and plan for the future. It has been known for nearly 20 years that this support and planning may prevent the significant psychological distress that people with dementia and their close supporters may experience,3,4 and provide information about the availability of medical and psychosocial support that improves morale.
We have had evidence for a decade that early recognition and intervention may delay care home admission,5 and this may be of importance in a disease process with enormous socioeconomic costs.1,6
The Audit Commission found that GPs wanted more training in dementia diagnosis and management, and it also focused attention on shortfalls in resources in specialist and social care.7
As advocated by the Audit Commission, the National Service Framework for Older People in England accepted that specialist services should support the development of dementia care in general practice by developing protocols for dementia diagnosis and management across service boundaries by April 2004.8
The NICE and SCIE guideline on dementia
Primary care is the point of first medical contact and, as such, is the cornerstone of management, ensuring early detection, timely intervention, and effective ongoing care.9
The recent guideline produced jointly by the National Institute for Health and Care Excellence (NICE) and the Social Care Institute for Excellence (SCIE)10 is, in part, a response to the needs of primary care. The multidisciplinary composition of the guideline development group resulted in a set of proposals about dementia that cover the whole care path from earliest recognition of dementia to end-of-life care. These proposals apply as much to the GP and practice nurse as to the psychologist in the memory clinic, the care home manager and the social worker.
The guideline includes recommendations on:
- the components of the diagnostic process that can be carried out in general practice
- advice on medication use
- requirements for review and evaluation of care plans
- the availability of memory assessment services
- the promotion of independence and maintenance of function of those with dementia
- the steps required when assessing an individual's capacity to make decisions.
As highlighted in the guideline, there is also a need for formal agreements on joint working between health, social care, and housing. An example of this is the website www.everybodysbusiness.org.uk, which is run by the Care Services Improvement Partnership and is funded by the Department of Health.
Box 1 lists the first five steps that GPs should take into account in the diagnosis and management of dementia, as recommended by the NICE/SCIE guideline.
The guideline also notes the importance of adopting a palliative care approach from diagnosis until death, which supports the quality of life of the patient with dementia. The primary care team should assess the palliative care needs of the patient, and these should be communicated to other health and social care staff.
The range of evidence presented in the guideline will help GPs to plan their work with patients with dementia, and with their families.
Box 1: The first five steps for general practice in dementia diagnosis and management10
1. Use a cognitive function test, with consent, whenever you suspect a dementia syndrome is developing. The best one is the one preferred by your local old age psychiatrist or geriatrician, but favourites are the 30-point Mini-Mental State examination (MMSE), the 10-item Abbreviated Mental test score (AMTS), the neat and GP-friendly 6-item Cognitive Impairment Test (6CIT), or the newer General Practitioner Assessment of Cognition (GPCOG). None of these are diagnostic, and all can be affected by depression or educational level, but they give useful pointers.
Memory assessment services
The NICE/SCIE guideline recommends that memory assessment services should be the single point of referral for those patients with possible dementia.
Memory assessment services that identify signs of mild cognitive impairment should offer patients follow-up in order to monitor for signs of possible dementia.10
Demand for services
Commissioners will face problems with regard to extending the availability of imaging (preferably magnetic resonance imaging), so that it becomes a routine part of the diagnostic process.
They will also be presented with difficulties involving demand for good quality, accessible care when the number of care home places is falling.12
Pharmacological treatment for dementia
The evidence around medication use is relatively robust, although many drug trials have been too small, too brief, and too limited to provide the kind of data that would give an unchallengeable role to medication.12
The acetylcholinesterase inhibitors do seem to be effective as symptom-modifiers in around 40% of patients with Alzheimer's disease, at least for approximately 12 months. They do not improve memory but do seem to improve social interaction and the quality of life for both the person and for those around them.
Logically, NICE has sanctioned the use of acetylcholinesterase inhibitors, including donepezil, galantamine, and rivastigmine for patients with moderate to severe Alzheimer's disease, but has left the definition of 'moderate' up to clinicians, who can treat if there is significant impairment of everyday life. This makes it easier to initiate therapy, so the fear that these drugs may in some way be restricted by NICE is likely to be unfounded.
Apart from the value of psychological testing and imaging, the evidence for other actions and therapies in dementia is weaker with few, if any, trials to inform decision making. Best practice then becomes a question of professional judgement and experience, which is modified by feedback from service users—both patients and their family members.
More research is required
The NICE/SCIE guideline is unique in the extent to which the views of people with dementia and their carers were factored into debates about how services should work. Nevertheless, there are plenty of gaps in the research agenda to fill. Some questions that GPs could have a hand in answering are:
- which psychological interventions help carers?
- what are the important outcome measures for patients?—changes in a rating scale are one thing, but going out shopping without getting lost is another.
Summary—benefits for patients
If the guideline is implemented in health and social care we should see, over time, a number of benefits for people with dementia. These benefits will include the following:
- earlier recognition of their emerging problem, and closer management of the all-important diagnostic process and disclosure of the diagnosis that goes with it
- discussion of the potential for making formal advance decisions over healthcare and personal welfare, as well as finances, which will enable GPs to have greater understanding of what patients would like to happen to them as their disabilities increase, and enable GPs to incorporate these into care plans and records
- follow-up mechanisms in general practice are in place, which will provide the kind of psychosocial support that patients and carers find so beneficial—the shared care of medication use will be built into this systematic management
- general practice and social care will start to share common understandings of the needs of people with dementia—GPs will become more skilled in managing the behavioural and psychological symptoms of dementia syndromes that can be so problematic in the middle stages of the disease, and end-of-life care in community settings will become more readily available and more skilled.
NICE implementation tools
NICE has developed the following tools to support implementation of its guideline on dementia. They are now available to download from the NICE website: www.nice.org.uk.
Guide to resources to support implementation
Supplementary costing report and template
- Dementia has a high impact on health and social care costs, especially unscheduled admissions
- Good proactive care can reduce the likelihood and cost of emergency admissions
- Mental health services are not covered as yet by the Payment by Results tariff but prescribing and general hospital services are
- Look to agree a local care pathway for specialist assessment and initiation of these drugs in line with NICE guidance
- Look at the costing templates on the NICE website to build business cases under PBC for new services14
- Alzheimer's Society. Dementia UK. A report into the prevalence and cost of dementia prepared by the Personal Social Services Research Unit (PSSRU) at the London School of Economics and the Institute of Psychiatry at King's College London, for the Alzheimer's Society. London: Alzheimer's Society, 2007.
- Bosanquet N, May J, Johnson N. Alzheimer's Disease in the United Kingdom: burden of disease and future care. Health Policy Review Paper Number 12. London: Health Policy Unit Imperial College School of Medicine, 1998.
- Levin E, Sinclair I, Gorbach P. Families, Confusion and Old Age. Aldershot: Gower, 1989.
- Schulz R, O'Brien A, Bookwala J, Fleisner K. Psychiatric and physical morbidity effects of dementia caregiving: prevalence, correlates, and causes. Gerontologist 1995; 35 (6): 771–791.
- Mittelman M, Ferris S, Shulman E et al. A family intervention to delay nursing home placement of patients with Alzheimer disease. A randomized controlled trial. JAMA 1996; 276 (21): 1725–1731.
- McNamee P, Bond J, Buck D et al. Costs of dementia in England and Wales in the 21st century. Br J Psychiatry 2001; 179: 261–266.
- The Audit Commission. Forget Me Not 2002. London: Her Majesty's Stationery Office, 2002.
- Department of Health. National Service Framework for Older People. London: DoH, 2001.
- Downs M, Turner S, Bryans M et al. Family carers' accounts of primary care services for their relatives with early signs of dementia. Dementia 2006; 5 (3): 353–373.
- National Institute for Health and Care Excellence and the Social Care Institute for Excellence. Dementia: supporting people with dementia and their carers in health and social care. Clinical guideline 42. London: NICE, 2006.
- National Collaborating Centre for Mental Health. Dementia: supporting people with dementia and their carers in health and social care. London: RCP, 2006.
- Macdonald A, Cooper B. Long-term care and dementia services: an impending crisis. Age & Ageing 2007; 36 (1): 16–22.
- International Psychogeriatric Association Consensus conference. Defining and Measuring Treatment Benefits in Dementia. Canterbury, 31st October–1st November 2006.