Charles Bonnet Syndrome

This week was the launch of Esme’s umbrella, a charity established to increase the awareness of Charles Bonnet Syndrome (CBS).  

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Author: Daniel Hardiman-McCartney MCOptom, Clinical Adviser
Date: 27 November 2015

Among optometrists, I am sure CBS needs no introduction, but levels of awareness among practitioners can be low to variable, according to the charity’s founder, Judith Potts.  Her mother developed the condition after many years of slowly progressing macular degeneration. After not being able to bear the terrifying hallucinations, Judith’s mother confided in her. Seeking medical help from both her ophthalmologist and GP proved impossible; her ophthalmologist refused to discuss it and her GP had never heard of it. Esme’s umbrella is going to try and redress this by raising awareness among all healthcare professionals and encouraging them to be proactive by talking about CBS with those affected by visual impairment. 

Why not educate every low vision patient and their relatives about CBS, so they do not need to feel the isolation and anxiety which is so often associated with this condition?

Judith has written that the terrifying reality of those affected by Charles Bonnet syndrome is one of immediate worry and confusion, due to the disorientating effects of the visual illusions from sublime patterns to disfigured faces. In particular the fear and anxiety that the hallucinations are an early sign of dementia cannot be understated; the potential loss of independence often leads those affected not to tell close friends or family members, let alone their optometrist or GP, leaving those affected isolated and unsure of what to do.

Research has shown that between 6%-11% of those with visual impairment have experience of a CBS type visual hallucination, so this is a condition that every visually impaired person should be educated about. But how many are suffering in silence? We do not know. The charity’s lead medical adviser is Dr Dominic Ffytche. His research suggests around a third of those affected have a negative outcome including fear of going out, long lasting hallucinations and anxiety that the hallucination may be the result of mental illness. 

Can optometrists do more? Knowing about CBS, and then waiting to be asked about it is clearly doing our patients an injustice, especially when we know sufferers are anxious not to talk about the condition. What would happen in practice if we were to ask all visually impaired patients whether they experience any visual disturbances or hallucinations? Is this happening routinely in practice already?  Would patients open up and talk more freely once they knew what they were experiencing was a normal symptom of visual impairment?  Once the discussion has taken place we then have the opportunity to give optometric advice and patient information that which may help reduce the effects of the hallucinations.

What should you do?  Firstly, how up to date are you with CBS? There is a great summary of the literature by Frank Eperjesi in Optometry in Practice.  Secondly, look through the current patient information available. I would recommend that produced by the RNIB and Royal College of Ophthalmologists.  I would also recommend the TED talk “What hallucinations reveal about our minds” by neurologist and CBS patient Oliver Sacks. Finally, if you are not already, be proactive in clinic. Why not educate every low vision patient and their relatives about CBS, so they do not need to feel the isolation and anxiety which is so often associated with this condition?

Useful link:Docet training video by Dr D Ffytche about the ageing eye and Charles Bonnet syndrome.

Daniel Hardiman-McCartney MCOptom
Clinical Adviser, College of Optometrists

Daniel graduated from Anglia Ruskin University, where he won the Haag Strait prize for best dissertation. Before joining the College, he was Managing Director of an independent practice in Cambridge and a visiting clinician at Anglia Ruskin University. He has also worked as a senior glaucoma optometrist with Addenbrooke’s Hospital in Cambridge and as a diabetic retinopathy screening optometrist. Daniel was a member of Cambridgeshire LOC from 2007 to 2015 and a member of the College of Optometrists Council, representing its Eastern region, from 2009 to 2014.  

Daniel has an interest in the effects of vision in art and is known throughout the industry as a passionate advocate of iconic and artisan eyewear. He currently practises part time in independent practice, is a locum, a glaucoma specialist optometrist across East Anglia with Newmedica and is clinical adviser to the College of Optometrists.

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