There can be little doubt that public and professional awareness of dementia is the highest it has ever been. Yet the profound stigma that surrounds the disease means it can often miss out on research investment, public profile and care initiatives – even though 25% of all NHS beds are occupied by patients with dementia and upwards of 80% of care home residents have the disorder.
The QOF allows us to identify the number of patients with a diagnosis and the numbers whose care is reviewed each year. By comparing these diagnosis numbers with the estimated prevalence of dementia, we are able to calculate the diagnosis rate both nationally and by CCG area. It is this national figure (currently 46%, up from 42% last year) that has hit the headlines. Less than half of people with dementia have a diagnosis – it is hard to see how this would be acceptable in other branches of medicine.
The new DES
With the new dementia case-finding DES starting last month, there has been much discussion about the benefit of early diagnosis, case-finding and population screening for dementia. There are three related activities to consider: asking about memory problems, diagnosing dementia and screening for Alzheimer’s disease.
I believe it is appropriate to ask about memory problems in patients who are at risk of developing dementia to raise awareness about the condition, help reduce stigma and make it more acceptable to discuss memory difficulties. There is no suggestion of diagnosing dementia in patients who have minor symptoms not affecting their life; current diagnostic criteria would not allow this anyway, because there needs to be a significant impact on the patient. It is important to bear in mind that symptoms of dementia may be related to activities of daily living (so-called executive function, the ability to sequence and plan activities). It’s also important to remember that not all dementia is Alzheimer’s disease – patients with long-term neurological conditions such as Parkinson’s disease are also commonly affected.
Diagnosing dementia at a time when patients can benefit from the medication and support which are available is entirely appropriate and the push towards this diagnosis is what the current initiatives support. Most people now use the phrase ‘timely’ rather than ‘early’, supporting a patient-centred approach that is not tied to a particular disease stage and which assumes that the patient – and carers and families – will gain benefit from interventions and support.
And then there is screening. Population screening in its broadest sense suggests the application of a test to an entire population. This approach is not appropriate for dementia, according to current criteria, and should not be undertaken. Nor is this approach equivalent to the enhanced service for dementia.
Improving quality of life
The DES has inevitably prompted much debate, but it is part of a wider set of measures that are designed to improve the quality of life and lived experience for patients with dementia.
For example, the hospital Commissioning for Quality and Innovation (CQUIN) scheme which incentivises the detection of people with possible dementia is helping to raise the profile of dementia and delirium in the acute hospital setting.
Memory clinics play an important role in diagnosis and assessment, particularly given that not everyone referred to a memory clinic has dementia – in our clinic about a third of patients do not. But we also need to do things differently and develop novel ways of examining the interface between primary and secondary care to look after patients with memory difficulties.
One example is the Gnosall model, offering memory assessment in primary care with expert support from a specialist memory service, which has rightly attracted widespread praise for its inventiveness, quality of outcomes and cost-effectiveness. I know of similar developments around the country.
The pros and cons of diagnosis
Enthusiasts argue that raising the diagnosis rate empowers patients; it is what they want, it puts them at the centre of the process and avoids the damaging development of crises.
Detractors say it is a politically driven target, can cause harm and is devoid of an evidence base, and argue that to diagnose dementia without support in place is not right.
There is general agreement from both ends of the spectrum that diagnosis for diagnosis’s sake is not enough – that support is essential and that the patient with dementia, and their family and carers, should be in charge. Crucial to this is the provision of high-quality data and outcomes. The day-to-day experience of patients with dementia is so important – reliable measures of quality of life exist and could relatively easily be implemented.
I accept there is genuine clinical and academic debate around this area – and my aspiration is to develop a series of initiatives around dementia, get information in place to support patients and their families post-diagnosis, get a suite of tools for colleagues in primary care to use to advise them on best practice and to improve them year on year. Having said that, I don’t think that waiting until everything is in place and until the evidence is perfect is acceptable.
Professor Alistair Burns is national clinical director for dementia and a professor of old age psychiatry at the University of Manchester