Charles Bonnet Syndrome

Impairment of visual function

Charles Bonnet Syndrome

Rare Disease Classifications:

ICD-11: 9D56 Visual release hallucinations

IMPORTANT INFORMATION

The information on the Rare Awareness Rare Education (RARE) Portal is intended for educational purposes only and does not replace professional advice.

Rare diseases typically display a high level of symptom complexity and variability. Individuals diagnosed with the same rare disease may be impacted differently and each person’s experience is unique. Please seek support from qualified healthcare professionals to learn more about the most suitable care and support options for you.

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Contributors

This page has been co-developed with RVA Partner, Charles Bonnet Syndrome Foundation.1

Quick Page Search:
Emergency Management | Clinical Care Guidelines | Synonyms | Summary | Personal Stories | Symptoms | Cause/Inheritance | Diagnosis | Treatment | Clinical Care | Research | Rare Disease Organisation(s) | Support Services/Resources | Mental Health | Other | References

Emergency Management

There may be special considerations for the emergency management of individuals living with Charles Bonnet syndrome (CBS) presenting to emergency departments.

CBS is a vision-related condition in which individuals see phantom images and is not related to mental illness or neurodegenerative conditions.2 CBS should be considered as a potential diagnosis for individuals who present with reports of visual hallucinations.

Clinical Care Guidelines

Royal Australian and New Zealand College of Ophthalmologists (RANZCO): Charles Bonnet Syndrome is a position statement developed to provide guidance to RANZCO’s Fellows and other health professionals regarding diagnosis, treatment and management of Charles Bonnet Syndrome.2

Synonyms

CBS; Visual release hallucinations; phantom vision syndrome

Summary

Charles Bonnet syndrome (CBS) is a vision-related condition, in which individuals see images that are not actually present (phantom images) due to decreasing or loss of vision.1,3 CBS is a distinct clinical condition, as recognised by the World Health Organization (WHO), and is not due to psychosis, dementia, or other neurodegenerative issues.2 It is important for health professionals to be aware of CBS and help individuals to understand that it is a vision-related condition and not a mental condition.2

CBS has been described as “phantom images in vision-impaired people of sound mind”.1 In CBS, the visions that appear are purely visual, and cannot be heard, smelt, felt or tasted.1 The type of images that are seen varies between individuals, and an individual with CBS may see more than one kind of image.1 The images may be black and white, or in colour, and may be still or moving.2

CBS can affect all ages (from 5 yrs upwards) but tends to be reported more in older people as most cases of vision loss occur in later life2-4 For many individuals, the symptoms can persist for five or more years.1-3

Useful Links for Professionals

Royal Australian and New Zealand College of Ophthalmologists (RANZCO): Charles Bonnet Syndrome

Charles Bonnet Syndrome Foundation (Australia): Health professionals

Personal Stories

Charles Bonnet syndrome (CBS) greatly varies between individuals. Some experience elementary forms such as brickwork, spirals or honeycomb whereas others can have vivid visions of figures, buildings and full landscapes.1 Each person’s experience is unique.

Please visit Charles Bonnet Syndrome Foundation (Australia) – CBS: Personal stories to read the personal stories of people living with CBS.

Symptoms

Individuals with Charles Bonnet syndrome (CBS) see images that are not actually present (phantom images). These images may include shapes or patterns, or physical things such as faces, people, animals, buildings, plants, and even landscapes.1-3 They may be still or moving images, and may be in black and white, or in colour.2

These images may suddenly appear and may last for a few minutes up to several hours.1-3

In some individuals, these symptoms may stop after 12-18 months, but in many individuals, the symptoms often persist for up to 5 or more years.2,3 The type of images that appear may change over time.

Individuals with CBS often experience anxiety due to these phantom images and are often concerned that it is a sign of mental illness, or that they may not be believed or taken seriously by others.1-3

Cause/Inheritance

Charles Bonnet syndrome (CBS) has been associated with vision impairment.2 CBS is often described in individuals with conditions that affect their vision, such as age-related macular degeneration (ARMD), glaucoma, cataracts, and retinal abnormalities.2,4 The syndrome though is not restricted to eye disease but can be elicited when there is any form of damage along the visual pathways from the optic nerve to the visual cortex, such as due to brain injuries, brain tumour, and stroke.1-3

The cause of the phantom visions is not well understood, but it is thought to be due to the brain reacting to the decrease in or loss of vision.1-3

Diagnosis

There is no definitive diagnostic test for Charles Bonnet syndrome (CBS).1

CBS is known as a diagnosis of exclusion, which means that all other possible causes (such as medication side effects, electrolyte imbalance, neurological or psychiatric causes) need to be ruled out.1,3

Treatment

There is no effective treatment for Charles Bonnet syndrome (CBS).1 In some cases, treating the cause of the vision loss (such as removing cataracts or retinal reattachment) can help reduce or resolve the phantom images.1-3

There are some strategies that can help make the visions go away temporarily, such as1-3:

  • frequent blinking and rapid eye movements
  • changing positions from sitting to standing (or vice versa)
  • changing the levels of light in the environment (turning on or off lights)
  • distraction techniques

Other strategies to manage CBS symptoms include:1-3

  • regular monitoring of eye vision
  • use of visual aids to improve vision
  • reduce stress and anxiety as that can worsen the symptoms
  • seek peer support and reduce social isolation
Clinical Care

Healthcare professionals involved in the diagnosis and treatment of Charles Bonnet syndrome may include general practitioners (GP), neurologists, psychiatrists, geriatricians and ophthalmologists.1 The need for different healthcare professionals may change over a person’s lifetime and extend beyond those listed here.

Research

Please visit Australian Clinical Trials to learn about clinical trials for Charles Bonnet syndrome (CBS) in Australia; there may not be any clinical trials currently available.

Information regarding clinical trials for CBS in other countries can be found at ClinicalTrials.gov; there may not be any clinical trials currently available.

It is best to discuss your interest in any clinical trials with your medical team to determine suitability and eligibility.

Rare Disease Organisation(s)

Charles Bonnet Syndrome Foundation (CBSF)
Website: https://www.charlesbonnetsyndrome.org/
Contact form: https://www.charlesbonnetsyndrome.org/index.php/cbsf/contact-us

Please note that RVA does not necessarily monitor or endorse each group/organisation’s operational governance.

Support Services/Resources

The Charles Bonnet Syndrome Foundation (CBSF) offers support services for individuals with Charles Bonnet syndrome (CBS). More information about these services can be found at Charles Bonnet Syndrome Foundation: Our Services.

For information on available government and social services that provide support for individuals with a rare disease, please visit the National and State Services pages.

Vision Australia provides support and services to people of all ages and stages of life who are blind or have low vision.

Mental Health

Please visit the ‘Mental Health’ sections listed on the National and State Services pages.

Other

Further information on Charles Bonnet syndrome (CBS) can be found at:

References
  1. Charles Bonnet Syndrome Foundation. Accessed 10 July 2024. https://www.charlesbonnetsyndrome.org/
  2. Royal Australian and New Zealand College of Ophthalmologists (RANZCO). Position statement: Charles Bonnet Syndrome. New South Wales; 2023. 6p. https://ranzco.edu/wp-content/uploads/2018/11/Position-Statement-Charles-Bonnet-Syndrome.pdf
  3. Charles Bonnet syndrome. Accessed 10 July 2024. https://www.healthdirect.gov.au/charles-bonnet-syndrome
  4. Rojas LC, Gurnani B. Charles Bonnet Syndrome. Updated 25 July 2023. In: StatPearls [internet]. Treasure Island (FL): StatPearls Publishing. 2024- Accessed 1 August 2024. https://www.ncbi.nlm.nih.gov/books/NBK585133/
Page Last Updated

20/08/2024 14:42