Learning to Live with Charles Bonnet Syndrome
“In the evening, I like to watch the news. That’s when my ‘visitors’ most likely appear,” she said with a little laugh, glancing at her daughter. And then back to me: “I know they’re not there, but I find them interesting.”
“Oh, she sees funny things,” said the daughter. “She has Charles Bonnet Syndrome.”
I was in an intake interview with the pair before placing a caregiver in the home of this delightful 95-year-old woman with macular degeneration. We had been talking for about 40 minutes before she mentioned her “visitors.” It was already clear that she was fully oriented, sound-minded, intelligent, witty, and sharp. “When this first started, I thought I had gone crazy, but I know now I haven’t,” she said. “Now I just sit back and watch the show. Having Charles Bonnet Syndrome is like seeing a little movie, though it is quite strange.”
Hallucinations of vividly clear, complex patterns, people, faces, buildings, cartoons, children and animals – often in amazing detail – would be understandably disturbing and frightening. But this woman had learned that this trick of the mind happens to some people who have had vision loss. Hers was the healthiest reaction to Charles Bonnet Syndrome (CBS) I had ever seen.
CBS – named for the Swiss naturalist who first described it in 1760 (Bellows) – is little discussed and not widely known. Because I work with many elderly people, I know it because there is so much macular degeneration among the aged. It is the leading cause of blindness in those over 60 (National Institutes of Health and the National Library of Medicine). It is not thought to be rare, though it is likely vastly underreported: those who experience it are terribly frightened they have become crazy or demented, so they don’t dare mention their visions. (Menon, Rahman, Menon, and Dutton, 2003). However, it may occur in as many as one-third of visually impaired people (Light House International).
Such silence and fear are not entirely unreasonable. CBS can be misdiagnosed and often goes unrecognized by medical professionals (Menon, G., Rahman, I., Menon, S., and Dutton, G., 2003). Families often panic. Patients reporting such symptoms should be checked medically against the possibility of other causes, such as neurological diseases or medication side effects. CBS also can occur where damage or disease affects the area of the visual cortex of the brain. Those who experience it without known visual impairment should be checked for other conditions. (Royal National Institute of Blind People).
15 Tips for Managing Charles Bonnet Syndrome
There is no cure for Charles Bonnet Syndrome, so patients need to learn to live with and manage it — all too often on their own and in silence. Some patients can develop depression or anxiety as a response to CBS. There are, however, a variety of steps that can be taken to support low vision patients at risk for CBS, and to minimize its negative emotional effects:
- Every health care practitioner, person with low vision, their family and caregivers should be educated about CBS.
- Medical personnel need to learn how to correctly screen for and diagnose CBS (Menon, G., Rahman, I., Menon, S., and Dutton, G., 2003).
- An approach to screening that makes it easy for patients to admit their symptoms must be in every physician, nurse and nurse practitioner’s toolkit. (Menon, G., Rahman, I., Menon, S., and Dutton, G., 2003). “You know, many people who have vision loss see things that aren’t there. It’s called Charles Bonnet Syndrome. These are nothing to worry about, but they can be upsetting if you don’t know that. Have you ever experienced anything like this?”
- Any depression or anxiety should be treated appropriately with medication, counseling or some other applicable therapy (Light House International; Roberts, 2004).
- “Normalizing” the experience is absolutely vital, but without being dismissive of any upset the visions may cause the person. “Yes, lots of people have CBS, and they think they’re going crazy or have dementia, but they’re not… who wouldn’t think at first that they’ve lost their mind?” (Royal National Institute for the Blind)
- CBS patients should be encouraged to talk about their visions rather than remain silent about them. (RNIB; Menon, G., Rahman, I., Menon, S., and Dutton, G., 2003)
- CBS usually stops within 12 to 18 months. Reminding the patient of this every so often can be helpful. “Oh, did you have one of your Charles Bonnet episodes again? What did you see? I hope it didn’t upset you too much. You know, it should go away in time.”
- A good sense of humor can help in adjusting well to CBS (Roberts, 2004). Family and health care professionals can affirm lightheartedly how strange and bizarre the visions can be. Jokes about what is seen can be made, but only if the patient finds them amusing.
- Fascination for the images and the wonders of the brain can help reframe CBS from a problem to an “experience.” “Isn’t it amazing how the brain is stimulating itself by making all those amazing images! Did you know you had all of these tucked away in your head? Your brain is just so remarkable!” “Butterflies flying out of your toaster? School buses driving down your hallway? What creativity!”
- Refrain from psychoanalyzing the images to look for their deeper meaning – they do not yield productively to psychological interpretation. They are not the product of past trauma or unresolved feelings (Saks in Kiume, 2009).
- Remind the experiencer that they have from the start had the wisdom to recognize that these visions are not real, though at first they may have had some doubts. When meeting moments where they may not be certain, examining the clarity and detail is often telling; hallucinations might be sharper than the person’s remaining eyesight allows (RNIB).
- Since CBS episodes happen more often during “down time” than when the person is actively engaged in activities or with other people, decreasing their incidence may require finding ways to reduce social isolation, boredom, lack of stimulation, and low activity (Roberts, 2004; Murphy, 2012; Menon, Rahman, Menon, and Dutton, 2003).
- Sometimes, eye exercises — such as looking from left to right without moving one’s head for 15 to 30 seconds — can help stop a hallucination.
- Increased room lighting can sometimes prevent an episode of CBS visions if they commonly take place in low light (Murphy, 2012; RNIB).
- Some report that stress and fatigue can exacerbate CBS. Reducing causes of and increasing coping skills around stress, and getting enough rest can sometimes help (RNIB).
While CBS can be frightening and stressful, there can also be positive outcomes. American author, humorist and cartoonist James Thurber lost vision in one eye as a child due to an accident. He reported many visions of strange things afterwards. It is suspected that he had CBS, and that these hallucinations fueled his amazing imagination. His hilarious stories and cartoons may have been a direct result of Charles Bonnet Syndrome (New World Encyclopedia).