Debating dementia diagnosis – detecting differences

The benefits of early diagnosis of dementia have been a well-established mantra over the last few years. An early diagnosis means that someone knows what is causing their symptoms or difficulties, enables them to plan ahead, and can provide access to care and treatment which may slow down the illness or make it more manageable. However, the opening debate at this year’s Dementia Congress threw the issue up in the air again.

Congress is perhaps the biggest annual event for those working in the field of dementia, as well as people with dementia and carers, and always opens with a debate. This year it revolved around the motion that “this house believes that dementia should be diagnosed as early as possible”. Two GPs opened the debate, one speaking in favour and one against. A vote was held before the debate and the majority of people supported the motion and very few people opposed it, although there were a lot of people undecided. The first four contributions from the floor were all from people with a diagnosis of dementia who spoke eloquently about how beneficial an early diagnosis had been for them. But the GP who opposed the motion made some telling points about the risk of diagnosing incorrectly if attempted too early, and the reluctance of doctors to diagnose in the face of an all too frequent absence of good post-diagnostic support. When a second vote was taken at the end of the debate the numbers of people opposing the motion rose dramatically and almost matched those who supported it.

I was struck by several thought. Firstly, having worked for many years with people with “functional” mental illnesses (schizophrenia, bi-polar disorder, etc.) where a diagnosis is frequently challenged by many who receive one (especially at events like this), I suddenly thought it interesting that people with dementia were so keenly arguing for the benefits of being diagnosed with dementia. I’m certainly not saying that either position is wrong but it does make one wonder what the differences are that generate such polarized reactions.

I also wondered if there is an invisible group of people with dementia who, for whatever reason, steadfastly refuse to seek or accept a diagnosis of dementia, in the opposite way that the voice of people who may have found a diagnosis of schizophrenia helpful for example, is much less frequently heard in the equivalent debates. But as someone who has neither been diagnosed with dementia or a functional mental illness it is not really my place to question the ways individuals choose to declare their acceptance or rejection of their medical status.

What concerned me more was that despite the voice of people with dementia featuring in the debate, the arguments put forward by a doctor (all be it against another doctor) seemed to have such an impact in changing people’s views. Was this partly a reflection of the power of the medical profession; that whatever a person has been diagnosed (or labeled) with, a doctor’s opinions trumped the lived experience of individuals who experience the illness, disability or distress? Whether you want a diagnosis or reject it, does your voice carry less weight than professionals who are either seeking to provide one, or resisting from doing so?

Professionals have an important role to play and diagnosing something that is causing problems in the mind or brain is by no means straightforward, but nor is living with those problems. Getting support or treatment is a lot harder if professionals start taking a position that resists acknowledging those problems or the difficulties they may cause.  Early diagnosis of dementia is not the panacea

but for those of us working in this field, getting alongside and supporting people experiencing distress or difficulties surely is.

And if you are wondering, I sat firmly on the fence both at the beginning and the end.