Alistair Burns and 51 colleagues reply to David Le Couteur and colleagues

In their article, “Political drive to screen for pre-dementia: not evidence based and ignores the harms of diagnosis,”1 Le Couteur and colleagues contribute to the BMJ’s “Too Much Medicine” campaign and attempt to repudiate three decades of dementia research and clinical practice. It completely misses the main aims of the current political approach and is in danger of affronting the millions of people with dementia and their families affected by this devastating illness, and of undoing much of the good done over recent years.

The impact of dementia is unique. It affects an estimated 36 million people worldwide, costs $600bn (£376bn; €444bn),2 and attracts profound stigma, which demotivates people to come forward for assessment and contributes to less than half of people with dementia being formally diagnosed.3 4 There are three points we would like to make.

Firstly, most of us in clinical practice recognise the scenario of, usually, an older person with cognitive problems coming forward for advice and reassurance. A sensible and sensitive clinical assessment can identify remediable causes for this. Where such causes are found but the person is not regarded clinically as having dementia, it is important to respond to that.

Secondly, initiatives such as memory clinics help provide support to colleagues in primary care. Novel services (which should be evaluated) are being developed that result in better outcomes for patients and their carers and that can potentially save money.5 They also have the effect of emphasising that dementia does not need to be a “specialist” condition but one that, if proper support is provided to primary care (whose services are already stretched), can be detected and diagnosed in the community. The drugs we have to treat many of the underlying causes of dementia would not be available without research and development from industry (an error appeared in the article—the authors state that the cholinesterase inhibitors cost £800-1000 per patient each year in the UK, when this cost is £23 for donepezil6).

Thirdly, the developments in policy and practice are directed towards the estimated 400 000 people in the UK who have dementia but who do not yet have a formal diagnosis and therefore are being denied access to the financial, psychological, and practical support that the diagnosis can bring. To speak of the “curse of diagnosis” is misleading and bordering on an insult to the many people who seek one. Surveys of patients, carers, and the general population consistently find that diagnosis is generally what people want.2 There is no suggestion that population screening for dementia will or should be introduced in practice, and the initiatives aim to identify people who have dementia, as yet undiagnosed, by case finding.

Mature and open dialogue with patients, carers, and colleagues from all disciplines will help us enable people to live well with dementia by normalising and destigmatising dementia, as well as ensuring that patients and their carers have the opportunity to optimise their involvement in planning their care. We need high quality education for everyone involved in dementia care and evidence based services that respond to the needs of people with dementia and balance the supply/demand sides, so that we can avoid the inverse care law of giving the most care to the least in need. At the same time, we need to know more about the natural course of dementia and the nature of its main causes. We hope others share a similar view.