The road to a confirmed diagnosis of one or other type of dementia is usually a difficult one, and one that research says can take at least three years for people under the age of 65. In very basic terms, being confirmed with dementia means at least two of the symptoms of dementia get in the way of daily living.
As patients, it seems, the inaccuracies, the misdiagnoses, the lack of a confirmed diagnosis, and the overall management and care comes down to faith! When I looked for an image for the word confirmed, it came up with a religious one! So, perhaps it really is, from our perspective, all about faith.
Dr Shibley Rahman wrote a blog about Mild Cognitive Impairment (MCI) recently, in part as a response to Ken Clasper’s blog Rediagnosis from one dementia to MCI about his diagnosis being changed. I imagine, if I had been tested repeatedly over as many as ten or more years, and had not been given a diagnosis of dementia, I would have to believe the symptoms of dementia may be caused from something else. All sorts of health issues that are not dementia can cause cognitive impairment, for example depression, urinary tract infections, other types of mental illness such as conversion disorder.
There are literally a barrage of reasons that cognitive impairment can occur, and that are not be attributed to a dementia. It is extremely complex, and to blame doctors is not necessarily helpful or right. They are doing their best, in a world where change is happening so quickly, and it is very hard to keep up. On top of that, the undergraduate training of older doctors, did not educate about dementia enough; it is pleasing there are so many countries who are up-skilling undergraduates doctors and nurses, as well as those already in practice, including in Australia.
But on top of a diagnosis of dementia, it is very unsettling to have been incorrectly diagnosed with something like depression, only to find out years later, it was in fact, a dementia.
It is, also, according to the people I know who have had a diagnosis of dementia changed to something that is not a dementia, even more unsettling and confusing. I’m told, it makes them feel like frauds.
Currently, a diagnosis of any dementia cannot be confirmed until an autopsy. The point being, not enough is known yet about dementia, and further research is required before we can be positive of any dementia diagnosis. However, doctors can be reasonably sure, certainly enough to either confirm, or not confirm a diagnosis even though occasionally they make mistakes. Well, let’s be reasonable, everyone makes mistakes.
Curiously, there are some people who obviously to want to have a diagnosis of dementia, and who may in fact be living with many of the symptoms of dementia, but even after extensive testing, have not had a diagnosis of a dementia confirmed.
It makes me wonder, is dementia the current ‘in’ group to be in, simply because many people are speaking out as advocates, and it is gaining publicity?
Earlier this year, I even heard someone who does not have dementia or even MCI, nor is worried they might have, say that they almost wished they had dementia so they could be a member of Dementia Alliance International.
Now, that is a huge compliment for that organisation, especially one so young, but really, who would want to be diagnosed with a terminal illness, for which there is no cure in sight, and not even any disease modifying drugs available yet???? Wow, dementia must be being seen as some rather fabulous ‘club’ to be in.
There has been an interesting Facebook discussion following Ken and Shibley’s blogs about whether MCI leads to dementia, and this image shows part of that conversation. It is indeed complex, and rather fascinating.