The world’s first foundation for people with Charles Bonnet Syndrome has been established in Australia to raise clinical and non-clinical awareness of the condition and offer support services to those affected.
The foundation says tens of thousands of vision-impaired Australians with CBS are suffering in silence but accessing visual aids and localised lighting can help reduce or resolve the phantom visual images that they experience.
Optometrists can refer patients with CBS to the Charles Bonnet Syndrome Foundation to access services including a nationwide telephone helpline, support groups, a website, brochures and case management.
The foundation also runs educational programs for support agencies that work with low vision patients and offers presentations and training for academic, clinical and community groups.
In CBS, psychologically normal people, usually with vision impairment, experience complex visual hallucinations due to an over-active region of the visual cortex. Clinicians believe 17 to 30 per cent of vision-impaired people will experience CBS.
The syndrome commonly results from eye diseases such as macular degeneration and glaucoma but also cataracts, diabetic retinopathy and retinitis pigmentosa. It can also occur after clinical conditions such as stroke and brain tumour when they affect visual regions of the brain or multiple sclerosis when optic neuritis occurs.
Director of the foundation Scot Muirden, who has degrees in psychology and social work, said it was believed that upwards of 80,000 Australians were living with CBS but up to 80 per cent never mentioned it to anyone.
‘This figure is only expected to rise with an ageing population and as knowledge of CBS becomes more mainstream,’ he said.
‘Vision-impaired people who are living with the condition are often terrified to raise the matter with their doctor or family member lest they be viewed as mentally unstable or demented. They naturally fear the worst for their mental health and it is this unfortunate state of affairs that was the impetus for the establishment of the foundation.
‘Despite being clinically identified as early as 1760, CBS continues to reside at the periphery of medical and health-care interest within a clinical and social void. It is rarely raised or screened for by ophthalmologists and GPs are also largely unfamiliar with CBS.
‘The foundation was established to redress this glaring lack of attention given to the condition.’
The world’s leading authority on the condition and foundation patron, Dr Dominic Ffytche of London, confirmed it was the world’s first and only organisation dedicated to CBS.
Mr Muirden said optometrists could definitely help these patients.
‘The secrecy that surrounds the condition is a major impediment to better outcomes for people living with CBS so raising the issue with patients in and of itself can be therapeutic, but the issue needs to be raised in a sensitive, tactful and compassionate matter,’ he said.
‘For example, if you are working with someone who has low vision (low visual acuity or large field loss) ask something like: “Many people who have vision loss report seeing things that are not really there. I’m wondering if this has ever been the case for you.”
‘Whether they say yes or no, it is worthwhile to inform them that this is a common occurrence among people living with low vision, it is not a sign of mental illness or dementia, that they are still sane, and it is merely a quirky response from the brain to vision loss.
‘The great value of telling patients who say “no” is that it normalises the experience and provides useful forewarning if something occurs later.
‘This short explanation can be invaluable to many patients who have or may later develop the condition because it can allay their most fundamental fears of “I’m going bonkers” and you remove the stigma associated with their visual experiences.
‘The reassurance that this explanation can provide a patient can be priceless.
‘If they say “yes” try to determine whether they find the experiences stressful. If so, a simple explanation that they are not going bonkers may not be enough; they may need to be referred for more support to manage these symptoms.’
Mr Muirden highly recommended exploring vision aids for patients living with CBS because the aids offered the opportunity to optimise existing vision and sense of self-mastery and had been found in some studies to reduce or resolve CBS symptoms.
He recommended that optometrists who identify that a patient may be CBS-affected refer the patient to a low vision rehabilitation service and the foundation.
‘While there are some excellent practitioners within optometry who are familiar with CBS, like all professions working with people who have low vision, many are not knowledgeable about this unusual perceptual disorder,’ he said.
‘Generally, unless the practitioner sensitively and tactfully raises the issue, patients will not be forthcoming with their vision experiences.
‘Given the degree of secrecy and [clinical] silence that pervades the condition, the board at the foundation has prioritised raising clinical awareness of CBS. We are running educational programs to support agencies who work with low vision clients for it is only through raising awareness that referrals can be generated and then members can flow from that.’
The foundation, which operates out of Ross House in Melbourne’s CBD, also aims to raise money for CBS research. For information see www.charlesbonnetsyndrome.org or call 1300 121 123.