Medicines for Charles Bonnet syndrome

What it is

Charles Bonnet syndrome is a condition in which a person who has lost a significant amount of their sight experiences visual hallucinations — seeing things that are not really there. It is common in people with significant sight loss, though it is often not talked about. A crucial and reassuring point is that these hallucinations are caused by the sight loss itself, and are not a sign of a mental health problem or a condition such as dementia — they occur because, when the brain stops receiving as much visual information from the eyes (due to the sight loss), it can, in effect, create its own images, which the person then "sees". The person with Charles Bonnet syndrome is aware that they have sight loss, and their mind is otherwise working normally; the hallucinations are purely visual (the person does not hear, smell, or otherwise sense the hallucinations), which helps distinguish the condition. The hallucinations can vary widely — from simple patterns, shapes, lines, or flashes of colour, to more complex and detailed images, such as people, faces, animals, objects, buildings, or scenes; they can be in black and white or colour, still or moving, and can last from seconds to longer. Importantly, most people realise (or can come to understand) that the images are not real, particularly once they know about the condition. Charles Bonnet syndrome can be unsettling or even frightening, especially before a person understands what is happening, and some people worry that they are "losing their mind" — which is why understanding the condition is so important and reassuring: knowing that the hallucinations are a recognised, harmless result of the sight loss, and not a mental health problem, greatly relieves this worry. There is no specific cure for Charles Bonnet syndrome, but understanding it, reassurance, and some practical strategies help people cope with and manage the hallucinations, which often become less frequent or troublesome over time for many people. The key messages are that Charles Bonnet syndrome is visual hallucinations in people with significant sight loss, that they are caused by the sight loss (not a mental health problem or dementia), and that understanding the condition brings reassurance and helps people cope.

How it is treated

Charles Bonnet syndrome is managed mainly through understanding and reassurance, along with practical strategies to cope with the hallucinations; there is no specific cure, but knowing the condition is harmless is very helpful, and the hallucinations often lessen over time. The most important and helpful thing is understanding: recognising that the visual hallucinations are a recognised, harmless result of significant sight loss (because the brain, receiving less visual information, creates its own images), and that they are not a sign of a mental health problem, dementia, or "losing one’s mind", provides great reassurance and relieves the worry that many people have. This is why it is helpful for people with sight loss to know about Charles Bonnet syndrome, and why talking about it (with an eye care professional, GP, or sight loss support services) is worthwhile — many people are relieved to learn that what they are experiencing is a known condition. Practical strategies can help people cope with and manage the hallucinations when they occur; these vary between individuals, but some people find that things such as changing the lighting (as hallucinations may be more likely in certain lighting), moving the eyes or blinking, changing what they are doing, or moving to a different environment can help interrupt or reduce the hallucinations; and knowing that the images are not real and will pass helps reduce distress. Managing the underlying sight loss and making the most of remaining vision (with eye care, low-vision support, and aids) is also relevant. For most people, no specific medical treatment is used, as understanding and coping strategies are the mainstays; occasionally, where the hallucinations are particularly distressing or troublesome, further support or, rarely, other approaches may be considered, and it is worth discussing with a professional. Support from sight loss organisations, which provide information and support about Charles Bonnet syndrome (and sight loss generally), is valuable, and it can help to talk to others who understand. Over time, the hallucinations often become less frequent or troublesome for many people, though this varies. It is important that a person experiencing new hallucinations is appropriately assessed to confirm the diagnosis and exclude other causes where relevant, particularly the first time. The reassuring and important messages are that Charles Bonnet syndrome is a harmless, recognised result of sight loss (not a mental health problem or dementia), that understanding this brings great reassurance and relieves worry, that practical coping strategies help manage the hallucinations, and that they often lessen over time; so understanding the condition, reassurance, coping strategies, and support are the keys to managing it.