Charles Bonnet syndrome in patients with geographic atrophy secondary to age-related macular degeneration: a cross-sectional study

Nathalie Skovgaard Eriksen; Nabi Mousavi; Yousif Subhi; Torben Lykke Sørensen; Marie Krogh Nielsen

doi:10.1177/25158414241305500

Charles Bonnet syndrome in patients with geographic atrophy secondary to age-related macular degeneration: a cross-sectional study

Ther Adv Ophthalmol. 2025 Jan 16:17:25158414241305500. doi: 10.1177/25158414241305500. eCollection 2025 Jan-Dec.

Authors

Nathalie Skovgaard Eriksen^{1

2}, Nabi Mousavi^{1

2}, Yousif Subhi^{1

2

3}, Torben Lykke Sørensen^{1

4}, Marie Krogh Nielsen^{1

2

4}

Affiliations

¹ Department of Ophthalmology, Zealand University Hospital, Roskilde, Denmark.
² Department of Ophthalmology, Rigshospitalet, Copenhagen, Denmark.
³ Department of Clinical Research, University of Southern Denmark, Odense, Denmark.
⁴ Faculty of Health and Medical Sciences, University of Copenhagen, Copenhagen, Denmark.

Abstract

Background: Age-related macular degeneration (AMD) is a prevalent cause of irreversible vision loss among the elderly. The prevalence and detailed characteristics of Charles Bonnet syndrome (CBS) remain largely unexplored in patients with geographic atrophy (GA) secondary to AMD.

Objectives: To investigate the prevalence and characteristics of CBS in patients with GA secondary to AMD.

Design: Prospective cross-sectional study.

Methods: A total of 149 patients with GA secondary to AMD were previously screened and examined for clinical studies. These patients were then prospective contacted by telephone for this study, and 120 patients responded and agreed to do an interview on symptoms of CBS. All with CBS were inquired about detailed characteristics of their hallucinations.

Results: Patients with GA secondary to AMD were aged 82.1 ± 6.2 years and 62% were of female biological sex. The prevalence of CBS was 25 in 120 (20.8%). Thirteen (52%) of those with CBS were not previously informed of the disease. We found no difference between those with and without CBS in terms of age, biological sex, hearing difficulties, whether living alone or with others, co-morbidity of psychiatric or neurological diseases, or psychotropic use. Characteristics of the visual hallucinations were reported to occur at various frequencies from daily to less than monthly, occur during various times of the day, and almost always last minutes at most. Ten in 25 (40%) had not told anyone of having CBS.

Conclusion: One in five with GA has CBS, which ranks GA as an eye disease with one of the highest reported prevalences of CBS. The condition presents with a significant variation across the patient group. A very large proportion of those with CBS were not informed of the disease and had never told anyone of their condition by their own initiative.

Keywords: Charles Bonnet syndrome; age-related macular degeneration; geographic atrophy; visual hallucinations.

Plain language summary

Plain language summary Visual hallucinations in patients with atrophic late stage of age-related macular degeneration (AMD) We investigated the prevalence and characteristics of visual hallucinations (Charles Bonnet syndrome) among patients with the atrophic late stage of age-related macular degeneration (AMD), termed geographic atrophy (GA). We found that one in five patients experiences visual hallucinations. Many patients were not informed about the benign nature of these hallucinations, and many had never shared their experience with anyone. These findings are important, as Charles Bonnet syndrome has been described to be stressful for the patient and contributes to a lower quality of life, which is an important finding in patients with GA.