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Telegraph columnist Judith Potts is calling on care and health professionals to be on the lookout for older people suffering from “clear and vivid hallucinations” in a bid to boost awareness of the frightening and debilitating condition Charles Bonnet Syndrome.
She set up the charity, Esme’s Umbrella, after her mum experienced disturbing hallucinations for months before being diagnosed. “I do wish these people would get off my sofa”. With these words my mother broke her year-long silence about her ‘visions’ – as she called them.
“They go if I tap them on their shoulders”, she continued while I tried to reassure her there was no one there – all the time considering the possibility that this was the beginning of dementia.
“She saw faceless people, a goblin-like creature who hopped constantly from table to chair and a tear-stained Victorian street child followed her everywhere - which was particularly hard for my mother who had been a children’s nurse.
“Edwardian-style funerals filled her garden, armies marched through the house or the room morphed into another scene.”
The hallucinations tormented her mother and, eventually, Esme was admitted into a nursing home, where Ms Potts was asked to explain Charles Bonnet Syndrome (CBS) to the care home manager and her staff.”
Ms Potts wrote a booklet, which was added to the training scheme, so that “everyone from the nursing staff, to auxiliaries, catering, or housekeeping knew that my mother had CBS and not dementia – and that reassurance was essential”.
The hallucinations remained with her mother to the end of her life. When Ms Potts’ mother told her about her hallucinations, Ms Potts realised after reading a newspaper article that what she was experiencing was CBS. The condition affects people with failing eyesight, yet she found that both her GP and optometrist were unaware of the syndrome.
This ignorance of CBS is quite common and she has realised that “many doctors and nurses know nothing about the condition”.
“There is very little research and no medication specifically for CBS – although sometimes a drug can be prescribed which helps. However, it depends entirely on what other health problems the person has and what medication is also being taken,” she says.
Health and care professionals can sometimes mix up the syndrome with dementia.
Health journalist, Ms Potts, says: “It could be a type of dementia – but, if the person shows no other signs of mental illness, it might well be Charles Bonnet Syndrome.” The condition causes silent visual hallucinations when a person loses 60 per cent or more of their sight - through any type of eye disease or an accident.
Too many 'suffer in silence'
These range from disturbing to frightening visions and Ms Potts is concerned that “too many people are suffering in silence because they, mistakenly, fear that the hallucinations herald dementia. This is emphatically not so. CBS is entirely to do with the brain ‘filling in the blanks in failing sight’ and has no link whatsoever to dementia.
“Sufferers report seeing words, geometric patterns or trellis-work, which covers everything. Others see dogs – both benign and snarling - flowers, insects, birds, snakes, worms, and frogs. People appear, either Lilliputian or normal size, sometimes dressed in costume – Edwardian or Victorian – and sometimes with distorted faces. Water – in oceans or rivers – features often, as do buildings. Sometimes the whole room can transform into somewhere completely different,” she reveals.
She is keen to emphasise that CBS hallucinations are silent and says: “If any of the other senses is involved - hearing, touching, smelling or tasting – it is not CBS”.
Sadly at the moment, there is no medication that can eradicate the hallucinations. Some people are able to manage their condition but others find the hallucinations take over their lives and become intolerable. “Often people who see worms or dirt in their food and drink stop eating – no matter how much reassurance is given – or, if the room changes and unexpected furniture, people or corridors appear, a person’s balance may be affected and falls occur,” she says.
There are some ‘brain-shunting’ strategies which can help to switch the hallucinations off. These can be found here
Ms Potts decided to set up the charity which is named after her mum Esme, as after she died “I wrote more articles about the condition in my Telegraph column and received many emails from people around the world, all looking for help. Some had been misdiagnosed and spent time in dementia units, others were coping but wanted to speak to people in similar circumstances, many described their experiences - all were relieved to discover that it was not dementia.
“It became apparent that awareness needed to be raised both within the medical profession and out into the community. With the help of Dr Dominic ffytche (from King’s College London) who is the lead researcher and globally acknowledged expert on CBS, I planned an awareness campaign and in November of last year, ‘Esme’s Umbrella’ was born, with an event at The House of Commons.”
Her aim is not only to raise awareness but to persuade ophthalmologists, GPs and optometrists to warn their patients, to offer support and lobby for funding for much-needed research and to combat misdiagnosis. Charles Bonnet Syndrome is named after the Swiss naturalist and philosopher, who documented the ‘visions’ seen by his 87 year old grandfather, who was nearly blind.
“This was in 1760 but here we are in 2016 and there has been little progress made in understanding or treating the condition. With our ageing population, there will be many more people developing CBS – so it is time we focused on the condition and Esme’s Umbrella is making a start.”
The charity’s website is www.charlesbonnetsyndrome.uk and there is a helpline on 0345 051 3925. The website carries a printable explanatory leaflet useful for the GP or care home staff, coping strategies; and the research work of Dr ffytche.
Ms Pott says: “If you are seeing ‘visions’ - or you know someone who is - please take our explanatory sheet to the GP or contact us. Please do not suffer in silence. You are not alone.
“If you would like to add your experience to our website, start a support group, or have any ideas about spreading the word, please email firstname.lastname@example.org.”