Re: There is no evidence base for proposed dementia screening
Carol Brayne and colleagues make a number of points about dementia policy and the current initiatives being consulted upon.
The issue of the terminology of early or timely diagnosis of dementia is important. Most people now agree that “timely” is a better way of describing what is trying to be achieved – it suggests a person centred approach, does not tie the diagnosis to any particular disease stage and encompasses the fact that the person (and/or their families and carers) will gain benefit from the process. Family carers cite lack of diagnosis as the greatest unmet need. The need for people to be able to ask about memory concerns is enshrined in the All Party Parliamentary Group’s recent report on Unlocking Diagnosis (http://www.alzheimers.org.uk/appg). We would extend this to say specifically that there needs to be support after diagnosis, an aspiration captured in the NHS Mandate (http://mandate.dh.gov.uk) which sets out the objectives for the NHS.
The view that there is no “high quality evidence” to support “early” diagnosis may be true but it is a shame if hundreds of thousands of people are denied access to the treatment and support from which they could benefit (such as autonomy and empowerment and a catalyst for discussions about Power of Attorney, maintaining health, driving, Advanced Care Planning and access to Telecare) because they are waiting for researchers and academics to develop evidence which passes the sometimes arbitrary hurdle of high quality. The lived experience of people with dementia and their families and carers which has guided policy articulates clearly the anecdotal but actual and often substantial harms done by not knowing what was going on. However, the lack of evidence does reflect the decision not to support population screening for dementia, something which is plainly, according to any definition of population screening, not being advocated. It is misleading to suggest that what is being consulted upon is tantamount to a diagnosis being “forced” on people and absolute respect must be given to anyone not wishing to know. We must be aware of the dangers of being overtaken by events and the availability of online tests, the success of awareness campaigns and the interest in dementia means that the public are much more informed and willing to talk about dementia and symptoms of memory loss.
We accept that the issue of potential harm is crucial, would contend that a definitive view on this should be subject to an evidence base, and by putting clinicians in the driving seat of any clinical assessment will protect individuals against any inappropriate intervention. Of course balanced with this, is the harm done to the estimated 400,000 people with dementia who do not have a diagnosis and who could benefit from the treatment and support which is available.
We value the opportunity to discuss issues around diagnosis and will be suggesting, to avoid a piecemeal approach to the debate, that we hold a consensus conference sometime in the next few weeks to air a variety of views with the ambition that we come to a conclusion which embraces the most important aspect – what constitutes the best outcome for patients, their families and carers.
The important thing for us all is that we are having a lively debate on dementia which has been forgotten for so long. Brayne and colleagues urge that the policy cart should not be put before the research horse – let’s align them.
Competing interests: Alistair Burns: Advisor on dementia to the Department of Health in England, Editor of the International Journal for Geriatric Psychiatry, received contribution towards travel expenses for launch of Betrinac. Sube Banerjee: Has received consultancy fees, speakers’ fees, research funding or educational support to attend conferences from pharmaceutical companies involved in the manufacture of antidepressants and antidementia drugs, and has been employed by the Department of Health for England. Peter Connelly: Has run a case-finding service for dementia for the past two years as part of a Scottish Dementia Demonstrator site development. Derek Hill: Employed by a company working on a project involving dementia diagnosis. Gill Livingston: Funded by the AS to do an RCT on increasing timely diagnosis. Peter Passmore: Received honoraria, clinical trial support and assistance with attendance at meetings from Pfizer, Eisai, Janssen, Shire, Lundbeck. Jill Rasmussen: RCGP Clinical Champion Dementia, Member of the Alzheimer's Disease Society GP Advisory Group. Simon Wright: Received honoraria and fees from the 4 pharmaceutical companies who have sold the drugs for dementia.