Knowing

I was asked to give a short interview to BBC Radio Bristol this afternoon. The subject was the rights and wrongs of early screening for dementia, and it picked up on a controversy already current in the media.

This is about whether GPs should screen all their older patients for dementia, even if they visit their doctor to talk about chest pains or arthritis. There are strong arguments for and against early screening, and the anti position has been fiercely argued by Dr Chris Fox from the University of East Anglia, as these articles in The Independent and Daily Mail show. Dr Fox is speaking at a conference in Bristol this evening.

The obvious point to make against early testing is that most of us don’t want to know about things which are certain or highly probable and about which we can do nothing. We live with the certainty of death, but not knowing when or how it will find us is helpful. We are conditioned to live with a mixture of fear and hope, as our forebears have throughout human history.

It is also true that what can be done in response to a diagnosis of dementia is very limited. But that is not the same as saying “nothing can be done”. There are treatments which can slow the onset of some dementias for some patients. Current and impending drug trials may dramatically improve the position over the next few years. It is also important to remember that early knowledge of a developing problem can help someone prepare in various ways – plan their care, put their affairs in order, grant power of attorney.

There is always the danger of a false positive, a wrong diagnosis which creates unnecessary alarm or gloom. This is statistically more likely the earlier the diagnosis is made. However, the patient should be involved in deciding whether that risk is worth taking, and ensuring that there is adequate access to dementia specialists is also important. This last point is not disrespectful of GPs, but they are generalists by definition, and it is normal for a GP to refer to other specialist clinicians.

Behind the fear of what early screening may do to a patient’s state of mind is the stigma and stereotype of dementia. The reality is that, terrible though dementia is, there are large numbers of people living with it and managing at least a reasonable quality of life. Some are astonishingly positive and creative, like the artist I wrote about in one of my blogs last month. Studies suggest that dementia sufferers with a diagnosis tend to have a better quality of life than people who have dementia but no diagnosis. It would be reasonable to assume that they are also less at risk in many respects, because more will generally be done to help them.

On balance, there is much to be gained from early screening, but the patient’s wishes need to be respected. Early screening should not be compulsory but, equally, patients should be able to opt in if they wish.