Visual hallucinations are associated with many clinical conditions of which eye disease (Charles Bonnet Syndrome), Parkinson’s disease and ‘the dementias’ (including Alzheimer’s disease) are the most important in terms of the number of people affected. Whatever their cause, the hallucinations can result in significant distress for patients and carers and have wider implications for the NHS. Yet, surprisingly, we know little about them or their treatment. The NIHR SHAPED programme is tasked with finding out key information needed to advise patients, carers and the NHS as a whole. It is currently collecting data from people with each of the conditions in different parts of the country to find out:

  • how many people have visual hallucinations
  • what happens to the hallucinations over time
  • how the hallucinations impact on quality of life and their economic cost
  • the types of services needed to support people with hallucinations
  • candidate treatments for future large-scale clinical trials.

The information will result in guidelines to be released for NHS professionals, patients and carers on the clinical management of visual hallucinations. The result of the Newcastle University CBS research project will be published in the spring. The team has been comparing the brains of people with sight loss and CBS against those with sight loss who do not develop the condition. The research has been funded by Thomas Pocklington Trust, Fight for Sight and National Eye Research Centre.

CBS Prevalence in Children

Dr Mariya Moosajee will lead a survey of paediatric ophthalmology clinics to establish CBS prevalence in children. This project is funded by Thomas Pocklington Trust. Following the revelation that a guide dog – Kika – is able to warn her owner – Dr Amit Patel – before his visual hallucination appears, The Medical Detection Dogs’ charity will research into what is the change in Dr Patel’s body that Kika is detecting. If this can be established and fed into on-going research, we might learn a great deal more about CBS.

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