Fans of Dire Straits will remember the line in Industrial Disease which goes “Two men say they’re Jesus – one of them must be wrong”. With this in mind consider two headlines. The first from Australian Doctor magazine “Early Dementia Diagnosis of Benefit to Everyone” and the second from The West Australian newspaper “Over-Diagnosis Risk to Dementia Prevention”. This second piece first appeared on The Conversation as “The Perils of pre-diseases: forgetfulness, mild cognitive impairment and pre-dementia.
Regular readers will know my concerns with over diagnosis of conditions and the medicalizing of life. The tentacles of this are now stretching into memory.
Lets be blunt. Everyone forgets things from time to time. We are all inclined to forget things a bit more as we get older. The catch being at the end of the day we remember the one or two things we have forgotten and “forget” about all the things we have remembered! This in turn fires our anxiety about losing our memories.
Losing ones mental faculties is the scariest part of growing old. The idea that we may not remember our friends, even who we are and not be capable of caring for ourselves is frightening. It is a terrible affliction for those who have it and those who care for them. Those who actually have dementia require considerable support and often end up in a facility
But not everyone who forgets a few things has dementia nor is on the road to it!
Much is made of Alzheimer’s being the next “epidemic”. It certainly will be if the definition gets widened to include more and more people who don’t have it.
So to get back to the two contradictory opinion pieces, Glenn Rees (CEO of Alzheimer’s Australia) wrote how early diagnosis benefits people even though there is no treatment. He claims it provides certainty for sufferers who know something is wrong but lack a diagnosis. This he claims alleviates anxiety.
Professor David Le Couteur of Sydney University wrote that over diagnosis would occur when otherwise healthy people are screened for any memory impairment. He notes that forgetfulness had been reclassified as “mild cognitive impairment” and then “pre-dementia”. By labeling these people as having pre-dementia we cause them anxiety.
As the song says,“ I don’t how you got the Bette Davis knees but most of all young man you have industrial disease”.
The basic problem is that the screening tests we have for dementia are not reliable. But even if they were accurate there is another major problem. Most people (over 90%)who have slight forgetfulness will NOT proceed to dementia even though all those with dementia start with slight forgetfulness.
This is the same problem that arises with pre-psychosis. Whilst those with psychosis may have shown certain behaviours in the lead up, the vast majority of people with the behaviours do NOT develop psychosis.
So is there any advantage in early diagnosis of dementia? In my opinion there is not. And there is significant harm from labeling people with a condition they do not have. It means every time they forget anything they will needlessly worry that another irreversible step has been taken on the road to Alzheimer’s.
Getting a diagnosis, which at best does not lead to treatment and at worst, gives you a label that is wrong will not alleviate anxiety. It will cause it. And if the diagnosis is “delayed” until it is actually a problem then what is wrong with that?
Glenn Rees claims that early diagnosis allows people to access support services. Nobody will do this unless the condition is sufficiently far advanced to warrant it. And herein lies the key issue. The Government has allocated nearly $270 million to “Tackling Dementia”. As with all advocacy groups Alzheimers Australia stands to get more funding if the problem is bigger and more people are affected.
By reclassifying benign forgetfulness as pre-dementia the numbers affected increases and calls can be made for more funding. The worst aspect of all is that those who are genuinely suffering and need support are less likely to get it when more people are falsely diagnosed.
Care and advocacy should be about quality not quantity!
Screening is fraught with problems. When we are talking about subjective measures it is even more problematic. When rates of false diagnosis are high it is even worse. And when timing of diagnosis makes no difference (people get care according to level of need not a label) then we are going down the wrong path.
One of them must be wrong. In my opinion David Le Couteur is correct.