Dementia is a complex problem of growing proportions that presents clinical commissioners with many dilemmas. Early recognition is promoted forcefully in current policy, but is often difficult in practice.
The diagnostic process can be complex because presenting symptoms of dementia are varied, and memory loss may not be dominant. There is ample scope for misattribution of symptoms to normal ageing or to depression, and the diagnosis may be resisted by the individual or their family. There is no disease-modifying treatment that could drive earlier diagnosis, and symptomatic treatments – such as cholinesterase inhibitors – provide weak beneficial effects on a minority of patients.
This article covers the strengths and weaknesses of the Department of Health's commissioning pack on dementia, and looks at three different approaches commissioners can take to improve dementia care locally.
Because of the complexity and high costs of dementia to health and social care – more than cancer, heart disease and stroke combined – there is a powerful policy imperative to improve suboptimal services.
The DH's commissioning pack, published last year, was designed for GPs and old-age psychiatrists, the two medical disciplines that manage most patients with dementia.1
It leaves clinical commissioners to decide who diagnoses, treats and supports people at a local level. The pack assumes clinical responsibility will rest with GPs, except during the formal diagnostic process and during acute admissions to hospital. Long-term follow-up of patients by specialists is actively discouraged, in order to create a rapid-response dementia service with a high throughput of patients.
The pack approaches dementia as a stand-alone problem that can be managed using a modular system of service specifications for different settings and different points on the disease trajectory. For example, the processes of diagnosis and counselling fit into the module for memory assessment services and the acute inpatient episode fits into a module for commissioning liaison old-age psychiatry services.
The pack contains a costing tool that can predict downstream gains from investments early in the process, mostly by delaying relocation to a care home. It also identifies some of the quality indicators that would help commissioners judge how well or badly a service is performing.
The problem that remains is that dementia is not a stand-alone condition, but one that overlaps with comorbidities, disabilities and frailty while progressing invariably to death.
Most people with dementia have major comorbidities – 57% have two or more expressions of vascular disease and/or diabetes, which predict higher mortality independent of age.2,3,4 The incidence of recurrent stroke is doubled in patients with dementia, and these patients also show greater functional and nutritional deficits as well as higher illness burden and costs.5,6 These comorbidities may be ‘overshadowed' by dementia, with consequent suboptimal management of acute myocardial infarction and atrial fibrillation, and diminished efforts to prevent secondary or recurrent stroke.
Part of the increase in service use comes from dementia's overlap with frailty, an unstable state in which minor events – such as a urinary tract infection – can have major consequences such as delirium, falls or loss of mobility, which themselves increase mortality.7
Although the course of dementia always ends in death, there are substantial concerns about the quality of end-of-life care for people with dementia – one result of this being that people with dementia at the end of life are often admitted inappropriately as emergencies to acute hospital wards.8
Clinical commissioners will need to factor their thinking about comorbidities, frailty and end-of-life care into the decision support offered by the DH's commissioning pack. They will need to consider what skills they can mobilise from the existing workforce and potential new entrants to enhance services for people with dementia. This is where organisational problems could begin.
Old-age psychiatrists may not feel comfortable with the assessment and management of physical pathologies as well as cognitive impairment and the behavioural and psychological symptoms of dementia. They can claim, reasonably, that they are not GPs. The obvious source of clinical expertise to manage complex needs is general practice, but GPs repeatedly report that they lack confidence in managing patients with dementia, and they struggle with frailty too.
Incentivising dementia care through local enhanced services may encourage GPs to acquire the skills needed and to develop a comprehensive approach to this complex population of older people.
Unfortunately, the evidence does not support this optimism. The QOF has incentivised diagnosis and annual management reviews since 2006, but there has only been a slight increase in the documented incidence or prevalence of recorded dementia.
Three ways forward
I can see three options for commissioners aiming to improve the care of people with dementia syndrome. Psychiatrists and geriatricians tend to favour the first or the third, but it may be that GPs feel better disposed than their colleagues towards the second – a GP-run, federated model.
- Improve current practice – Most CCGs currently favour an improved version of current practice, in which systematic GP follow-up is supported by specialist advice. GPs are beginning to get more specialised training in dementia care – for instance, through masterclasses and regional pharma-funded events – and QIPP data is being used to rank patients' risk and improve case management. As the DH recommends, specialists should deal with complex problems like difficult diagnoses, care in acute hospitals, reducing antipsychotic prescribing and end-of-life care, but should not undertake routine follow-up.
- Set up a federated model – Services can be integrated into a single organisational entity, such as a social enterprise, led by GPs who hire specialists directly. This is the federated model, promoted by old-age psychiatrist Professor David Jolley and Dr Ian Greaves, a GP in Gnossall, Staffordshire.9 Patients are managed in general practice, with specialists acting as consultants. The practice organises systematic follow-up of patients with dementia. However, in my experience, the success of the social enterprise or incentive-based model of care usually comes down to enthusiastic leadership rather than the model itself.
- Be innovative – The third option is to take advantage of the new commissioning environment to innovate. For instance, I learned about an alternative model for dementia care at the Alzheimer's International event in London in March. It was based around the Dutch system, where a care-home physician takes on much of the work a GP or consultant might do – training for this role is shorter than for general practice. In Holland, old-age psychiatrists and community geriatricians jointly run a service for older patients with complex needs, frailty or dementia. The care-home physician replaces the GP as the lead clinician for this patient group – equivalent to a specialist clinical assistant role in the UK. This model doesn't exist here yet, but it's just one example of the way GP commissioners are already looking to other healthcare systems when they tackle dementia as a commissioning challenge.
Professor Steve Iliffe is professor of primary care for older people at University College London, a former GP and member of NHS Brent CCG in Kilburn, north London
1 Department of Health. Dementia commissioning pack. 2011. tinyurl.com/8tzrwt2
2 Connelly A, Iliffe S, Grael E et al. Quality of care provided to people with dementia: utilisation and quality of the annual dementia review in general practice. Br J Gen Pract 2012;62:e91-8
3 Gambassi G, Landi F, Lapane K et al. Predictors of mortality in patients with Alzheimer's disease living in nursing homes. J Neurol Neurosurg Psychiatry 1999;67:59-65
4 Larson E, Shadlen M, Wang L et al. Survival after initial diagnosis of Alzheimer's disease. Ann Intern Med 2004;140:501-9
5 Moroney J, Bagiella M, Tatemichi T et al. Dementia after stroke increases the risk of long-term stroke recurrence. Neurology 1997;48:1317-25
6 Zekry D, Herrmann F, Grandjean R et al. Demented versus non-demented very old inpatients: the same comorbidities but poorer functional and nutritional status. Age Ageing 2008;37:83-9
7 Rait G, Walters K, Bottomley C et al. Survival of people with a clinical diagnosis of dementia in primary care. BMJ 2010;341:c3584
8 Sampson EL, Gould V, Lee D et al. Differences in care received by patients with and without dementia who died during acute hospital admission: a retrospective case note study. Age Ageing 2006;35:187-9
9 McNulty S. A federated approach to dementia. Practical Commissioning 2012, online 14 May. tinyurl.com/c6kawkz