Myths of Charles Bonnet Syndrome

How many people over the last 257-years have been misdiagnosed as having psychosis, delirium, dementia or any mental health condition? 

How many people have been deprived of their liberty or mental capacity? 

How many have been misdiagnosed because so many professionals do not know or understand very little about Charles Bonnet Syndrome (CBS)? 

Up to 60% of patients with Charles Bonnet syndrome are hesitant to tell their doctor about their visual hallucinations for fear of being labelled with a mental illness or dementia.  Misdiagnosis is also common as the syndrome is not recognised by clinicians and is often labelled as psychosis, delirium or early dementia.

Firstly, I’d like to address some common myths of CBS

[1] Visual hallucination is invariably linked to mental illness

The problem with the term visual hallucination is that it is invariably linked to mental illness. Hence it is a term often feared by those people so affected.  Research shows that those persons living with CBS tend to be reluctant to share their experiences lest they be viewed as 'crazy' or 'demented'.  CBS-affected people certainly experience imagery that is not really there however, they typically have insight into the unreality of what they 'see'.  The CBS-affected person understands what they 'see' is not real, even though they keep 'seeing' the images.  'Seeing' phantom visions is hard enough for people with CBS but when their symptoms are couched in such medical/psychiatric terminology then it reinforces erroneous links to mental illness, dementia or senility.  CBS is not a mental illness.

[2] CBS is a temporary and benign condition

It is now being suggested that for about 35% of all those living with CBS, their experiences are unpleasant and generally having a negative impact upon the quality of their lives many are finding that their CBS symptoms persist for much longer periods of time than traditionally thought. Once seen as a transient condition (ie. 12-18 months), it was recently discovered that 75% of those living with CBS had their symptoms for at least five years.  For such individuals, the standard information supplied about CBS (including reassurances that they are 'not going bonkers') may be insufficient to help them manage on a daily basis.

[3] CBS images have no personal connection

Most published material claims that CBS images tend to bear no relationship to a person’s life experience.  However, some certainly report imagery that appears to have direct relevance to their personal life. 

This includes:

**A United Kingdom woman - but living in Australia for the past 25 years - 'sees' Union Jack waterfalls.

**A car enthusiast who once drove vintage sports cars would primarily experience horizontal movement of images, typically vehicles.

**A composer 'sees' musical notation superimposed on his walls.

**A woman who worked with physically disfigured and abused children of war-torn Africa 40 years ago, now 'sees' disfigured faces of dark skinned children.

**A former builder's imagery includes housing estates and motorised equipment associated with the building industry.

These examples suggest that there may actually be a continuum of CBS experiences ranging from no (apparent) personal meaning to significant.  

Whether there are clinical repercussions for this remains a moot point. 

[4] CBS is an older person’s condition

Just as with dementia, CBS suffers from being labelled as a condition solely of the elderly. 

Whilst it is certainly the case that the majority of CBS cases occur in those of advancing years, it is important to stress that CBS can, and does, strike at any age.  There are several clinical reports of children as young as 6-7 years of age developing CBS as well as documented cases for those in early to mid-adulthood.  

In fact, a new research paper from Germany (Elflein et al, 2016) has found that CBS occurs in younger populations of the vision-impaired (i.e. under 40years of age) with two subjects as young as 18 & 21. This study is one of the first to demonstrate that CBS is not restricted to those of advanced years.

[5] CBS is rare and well diagnosed by professionals

The condition is only viewed as rare because of an entrenched mixture of silence, secrecy and (clinical) neglect.

CBS is under-reported and under-recognised.  This has repeatedly been the finding in a diverse range of clinical papers for the past thirty years.  People living with CBS tend to conceal their experiences from others while clinicians are typically not raising CBS awareness or encouraging patients to disclose unusual visual experiences.  This unfortunate combination has managed to keep CBS relatively hidden. 

In one study in the Netherlands it was found that for 16 CBS-affected individuals who consulted their GP or ophthalmologist, only one was correctly diagnosed (Tuenisse, 1996). The catch-cry that emanates over and over again is that CBS is under-reported, under-recognised and under-diagnosed.