The last few years have seen a much welcome progression, for the better, for dementia policy in England. This has been the result of the previous Government, under which “Living well with dementia: the National Dementia Strategy” was published  in 2009, and the current Government, in which the Prime Minister’s Dementia Challenge in 2012 was introduced.

Dementia is a condition which lends itself to the ‘whole person’, ‘integrated’ approach. It is not an unusual for an individual with dementia to be involved with people from the medical profession, including GPs, neurologists, geriatricians; allied health professionals, including nurses, health care assistants, physiotherapists, speech and language specialists, nutritionists or dieticians, and occupational therapists; and people in other professionals, such as ‘dementia advocates’ and lawyers. I think a lot can be done to help individuals with dementia ‘to live well'; in fact I have just finished a big book on it and you can read drafts of the introduction and conclusion here.

It is obviously critical that clinicians, especially the people likeliest to make the initial provisional diagnosis, should be in the ‘driving seat’, but it is also very important that patients, carers, family members, or other advocates are in that driving seat too.  I feel this especially now, given that there is so much information available from people directly involved in with patients (such as @bethyb1886 or @whoseshoes or @dragonmisery) This patient journey is inevitably long, and to call it a ‘rollercoaster ride‘ would be a true understatement. That is why language is remarkably important, and that people with some knowledge of medicine get involved in articulating this debate. Not everyone with power and influence in dementia has a detailed knowledge of it, sadly.

I am very honoured to have my paper on the behavioural variant of frontotemporal dementia to be included as one of a handful of references in the current Oxford Textbook of Medicine. You can view this chapter, provided you do not use it for commercial gain (!), here.

I should like to direct you to the current draft of a video by Prof Alistair Burns, Chair of Psychiatry at the University of Manchester, who is the current National Clinical Lead for Dementia. You can contact him over any aspects of dementia policy on his Twitter, @ABurns1907.  I strongly support Prof Burns, and here is his kind Tweet to me about my work.  I agree with Prof Burns that once individuals can be given face-to-face a correct diagnosis of dementia this allows them to plan for the future, and to access appropriate services. The problem obviously comes from how clinicians arrive at that diagnosis.

I am not a clinician, although I studied medicine at Cambridge and did my PhD on dementia there too, but having written a number of reviews, book chapters, original papers, and now a book on dementia, I am deeply involved with the dementia world. I am still invited to international conferences, and I personally do not have any financial vested interests (e.g. funding, I do not work for a charity, hospital, or university, etc.) That is why I hope I can be frank about this. Clinicians will be mindful of the tragedy of telling somebody he or she has dementia or when he or she hasn’t, but needs help for severe anxiety, depression, underactive thyroid, or whatever. But likewise, we are faced with reports of a substantial underdiagnosis of dementia, for which a number of reasons could be postulated. Asking questions such as “How good is your memory?” may be a good basic initial question, but clinicians will be mindful that this test will suffer from poor specificity – there could be a lot of false positives due to other conditions.

At the end of the day, a mechanism such as ‘payment-by-results’ can only work if used responsibly, and does not create an environment for ‘perverse incentives’ where Trusts will be more inclined to claim for people with a ‘label’ of dementia when they actually do not have the condition at all. A double tragedy would be if these individuals had poor access to care which Prof Burns admits is “patchy”. In my own paper, with over 300 citations, on frontal dementia, seven out of eight patients had very good memory, and yet had a reliable diagnosis of early frontal dementia. Prof Burns rightly argues the term ‘timely’ should be used in preference to ‘early’ dementia, but still some influential stakeholders are using the term ‘early’ annoyingly. On the other hand, I wholeheartedly agree that the term ‘timely’ is much more fitting with the “person-centred care” approach, made popular in a widespread way by Tom Kitwood.

I am still really enthused about the substantial progress which has been made in English dementia policy. I enclose Prof Burns’ latest update (draft), and the video I recorded yesterday at my law school, for completion.

Prof Alistair Burns, National Clinical Lead for Dementia

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