Getting diagnosed with dementia, while shocking, is usually probably better than living with dementia without ever being diagnosed in my own view. Saying “usually” and “probably” is important because there might be a tiny minority of people who’d rather die in ignorance of what is causing their problem. For the majority in my experience talking to people and families across the world, the possibility of taking control and demanding help at the earliest possible stage is more attractive than sliding into dependence without any handholds or staging posts.
Even so, each person might have a quite different personal ideal diagnosis time. “As soon as possible!” says the person with a long bucket list of things they want to do before they die. “Only when I reach the point where I can’t cope alone” says the person who fears loss of control, and sees no advantage in treatments and does not fancy social work or charity interference in their life. We are all different. But it would be good to be able to choose.
The “experts” are fighting over when the right time is. The expert charities in general say “Let’s do this as soon as possible”, and expert researchers are arguing that this is too soon and harmful. Ironically both are being ignored because, meanwhile, most GPs have already made the decision without consulting anyone. What have they decided? Well, in England and Wales they seem to have decided that they’ll not bother telling well over half to three quarters of the patients affected. They’re not really bothered about the Prime Minister’s Dementia Challenge. They know it will go away. They don’t get paid by the charities and they don’t value them much anyway. No. They are just going to keep going in the same track.
And what track is that? Well, it is joking with patients that it is “just their age” when they complain of cognitive decline. It is telling worried families that “confidentiality” means they can’t discuss “their patient” unless the patient raises the worry themselves, even if the problem is insightless dangerous behaviour. Et cetera.
The big discussion is therefore missing the point. Why argue about when is too soon and when is too late, when most people are not getting a diagnosis at all? I suspect that the support for avoiding the active search for dementia cases is more related to a suspicion of government targets and initiatives and a sort of medical political backlash against the policy wonks than real clinical decision making. Northern Ireland and Scotland have taken a different tack. They pick their fights to be about debatable issues.