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One of the occult dangers in medicine is the seductive appeal of an apparently obvious and sensible idea that has traction with the public and many in the profession, but may not be backed up by emerging science. An example is the failure of the public and professions to attend to mounting concerns about breast cancer screening programmes.
When the Swiss Medical Board recently recommended suspension of the Swiss mammography screening programme for breast cancer because it leads to too many unnecessary interventions, a veritable cloudburst of negative professional and public opinion erupted.
Yet the doubts underlying the process are so widespread that it is the flagrant ageism within the Irish health system about which I protest the least. History, however, will surely be unkind to a programme which, if it truly believed in what it was doing, excluded the age-groups most at risk of being both affected by, and dying from, breast cancer.
In my own area of work, with negative attitudes towards ageing and the diseases of later life still common, a number of these problematic notions still hold sway. One is that early diagnosis of dementia is universally a good thing. Debate about this crystallised recently when the UK government promoted screening by offering an incentive payment of £55 to GPs for diagnosing dementia.
Given that dementia has been a neglected syndrome until recently, to those unaware of the subtleties of what the condition means to those affected by it, this may seem like a good idea.
However, one of the key breakthroughs in dementia has been an awareness that the voice of the person with dementia can get lost, and that his or her agenda is not necessarily completely congruent with that of either carers or professionals, both of whom are likely to be more easily heard.
A pioneer in this area was the late Tom Kitwood, who described this phenomenon as malignant social psychology, referring to a social environment in which interactions and communications occur that diminish the “personhood” of those people experiencing that environment. In many cases these “malignant” interactions are not perpetrated from an intent of malice but rather are brought about through lack of insight or knowledge of the negative effects.
From many years of dealing with people with memory problems in my clinic, it is clear that many of them in the earlier stages do not wish to be assessed within the current clinical paradigm, and are also resistant to the discussion and labels that might arise thereafter. Inevitably they will have been brought to the clinic by a concerned and well-meaning relative, and they may not turn up again until the illness has progressed significantly.
There are many reasons this reluctance should be listened to. Unlike many other medical conditions, we do not yet have any medical treatments of substantive efficacy to offer, and investigations rarely uncover unsuspected reversible causes.
Second, the separation of a syndrome “mild cognitive impairment” – where we have memory problems – from dementia is quite difficult, and the consequences of each quite different in terms of implications for driving, insurance and issues such as stigma. In the context of general practice, making the diagnostic cut is even more difficult.
Early onset
But perhaps the most important aspect is that we have not had a serious dialogue yet with people with early dementia as to what they want in terms of diagnosis and support, a dialogue that we increasingly see through patient forums in areas such as cancer. While teasing this out is likely to be more challenging, it is an important initiative, and one that might help to positively influence the relative lack of supports later in the illness.
The public should be reassured that many senior figures in British general practice have protested strongly against unethical distraction of financial incentives for diagnosis of dementia, and pushed for a broader vision of working with, rather than for, people with dementia, and diverting the money to care instead (iti.ms/1wRNKnS).
In Ireland we need much better resources to assess, treat and support those affected by dementia.
This should remain on the basis of timely rather than early diagnosis, a distinction that emphasis the wishes of the person and a trusting relationship with their doctor unclouded by additional financial incentive.
Prof Desmond O’Neill is a consultant physician in geriatric and stroke medicine, and professor in medical gerontology at Trinity Centre for Health Sciences, Tallaght hospital, Dublin.