Charles Bonnet Syndrome and Vision Loss in Grand Rapids, MI

Charles Bonnet syndrome (CBS) refers to visual hallucinations that occur when the brain is adjusting to significant vision loss. It is most common in older adults, especially those with eye conditions such as age-related macular degeneration, glaucoma, or diabetic retinopathy.

Studies suggest that up to half of people with serious vision loss may experience visual hallucinations at some point, making Charles Bonnet syndrome far more common than most people in Grand Rapids realize.

Charles Bonnet Syndrome Is Not a Mental Illness

Many people in West Michigan who experience CBS feel afraid or embarrassed to tell their doctor because they associate hallucinations with mental illness, dementia, or “going crazy.” This can lead to unnecessary anxiety and isolation.

With Charles Bonnet syndrome:

  • The hallucinations are caused by vision loss, not a psychiatric disorder.
  • People usually know the images are not real.
  • There is no change in thinking, memory, or awareness beyond the visual experiences.

In many cases, the hallucinations gradually fade over 12–18 months as the brain adapts to reduced visual input.

If you live in Grand Rapids and are seeing things that aren’t there after vision loss, it is important to talk with a healthcare provider at Spectrum Health, Trinity Health Grand Rapids, Metro Health, or another local clinic to rule out other causes and confirm the diagnosis.

What Causes Charles Bonnet Syndrome?

The exact mechanism of Charles Bonnet syndrome is not fully understood, but doctors know it is strongly linked to significant vision loss.

Normally, the eyes send a constant stream of visual information to the brain. When that input is reduced or interrupted (for example, due to macular degeneration, cataracts, glaucoma, or retinal disease), the brain may start “filling in the gaps” with images from its own stored visual memories. This can lead to vivid, sometimes detailed visual hallucinations.

Key points about the cause:

  • Trigger: Moderate to severe vision loss in one or both eyes.
  • Brain response: The visual parts of the brain become more active without normal input, creating images.
  • Not related to: Personality, willpower, or mental weakness.

Because Michigan has an aging population and high rates of diabetes and cardiovascular disease, eye conditions that cause vision loss are relatively common in the Grand Rapids area, which may increase the likelihood of CBS in local older adults.

Symptoms of Charles Bonnet Syndrome

People with Charles Bonnet syndrome experience visual hallucinations only. They do not hear voices or sounds related to the images, and their thinking and awareness remain normal.

Common features include:

  • Awareness:
    • A realization that the hallucinations are not real, especially once CBS is explained.
  • Timing and setting:
    • Hallucinations often happen when a person is alone.
    • They tend to occur in quiet, familiar environments, such as lying awake in bed at night or sitting in a favorite chair.
  • No control:
    • The person cannot start, stop, or control what they see.

Types of Visual Hallucinations

There are two main types of hallucinations in Charles Bonnet syndrome:

1. Simple Hallucinations

These are basic patterns or shapes, such as:

  • Lines, grids, or brickwork
  • Netting, lattices, or mosaics
  • Geometric shapes or repeating patterns

2. Complex Hallucinations

These are more detailed images, such as:

  • People (strangers or familiar faces)
  • Animals
  • Landscapes, buildings, or entire scenes
  • Objects, vehicles, or rooms

Complex hallucinations are more likely in people with more severe vision loss.

How Hallucinations May Look and Feel

The experience of CBS can vary widely from person to person, and even from one episode to the next.

Hallucinations may be:

  • Color or black and white
  • Still like a photograph or moving like a real-life scene
  • Life-sized or miniaturized
  • Realistic (for example, animals or people) or fantastical (such as imaginary creatures)
  • Brief (lasting a few minutes) or prolonged (lasting hours)
  • Pleasant (like a beautiful landscape) or frightening (like a stranger in the room)
  • Random or involving familiar people or places

Some people see different things each time; others see the same images repeatedly.

Because the hallucinations can overlay the real world, they may interfere with daily activities, such as:

  • Walking safely through a room or unfamiliar environment
  • Recognizing what is real versus what is imagined at first glance
  • Feeling comfortable being alone at home, especially at night during long Michigan winters when people spend more time indoors

Emotional Impact and Complications

Even when people know the images are not real, Charles Bonnet syndrome can be upsetting. Common emotional reactions include:

  • Fear of “going crazy” or developing dementia
  • Embarrassment or reluctance to tell family or doctors
  • Anxiety or sleep disturbances
  • Avoidance of certain situations (for example, being alone or walking in new places)

In Grand Rapids, where seasonal affective symptoms can already increase in fall and winter due to shorter daylight hours, CBS may add to stress for older adults with vision loss.

Talking openly with a healthcare provider, counselor, or support group in the Grand Rapids area can significantly reduce fear and improve coping.

Other Causes of Visual Hallucinations

Not all visual hallucinations are due to Charles Bonnet syndrome. Other possible causes include:

  • Dementia (including Lewy body dementia)
  • Some forms of mental illness (such as psychosis)
  • Stroke
  • Parkinson’s disease
  • Brain tumors (including pituitary tumors)
  • Blindness in part of the visual field (hemianopia)
  • Short-term effects after cataract surgery
  • Certain medications or recreational drugs (including cannabis and some psychotic drugs)
  • Hormone therapies (such as estrogen replacement therapy)
  • Kidney failure and dialysis-related changes

Because many of these conditions require specific treatment, anyone in Grand Rapids experiencing visual hallucinations should seek a medical evaluation rather than assuming it is Charles Bonnet syndrome.

How Charles Bonnet Syndrome Is Diagnosed in Grand Rapids

There is no single test for CBS. Instead, doctors in Grand Rapids typically:

  • Take a detailed medical history
  • Perform a physical examination
  • Arrange a comprehensive eye examination (often with an optometrist or ophthalmologist)
  • Order additional tests or brain imaging if needed to rule out other causes

Diagnosis usually involves:

  1. Confirming significant vision loss
  2. Confirming that hallucinations are purely visual
  3. Ruling out dementia, mental illness, stroke, or other neurological conditions

Local eye care and medical providers who may help include:

  • Ophthalmologists and optometrists at:
    • Spectrum Health and Corewell Health eye clinics
    • Trinity Health Grand Rapids eye care services
    • Metro Health – University of Michigan Health
    • Private eye clinics throughout Grand Rapids and Kent County
  • Your primary care physician or geriatric specialist

The Kent County Health Department and Grand Rapids Public Health resources can also help connect you with low-vision and mental health services if needed.

Treatment and Management of Charles Bonnet Syndrome

There is currently no specific medication that cures Charles Bonnet syndrome. In many cases, hallucinations gradually become less frequent or disappear within 12–18 months as the brain adapts to vision loss.

Treatment focuses on:

1. Education and Reassurance

Understanding CBS is often the most important step:

  • Learning that CBS is common in people with vision loss
  • Knowing it is not a sign of mental illness or dementia
  • Realizing that others in Grand Rapids and across Michigan experience the same thing

Discussing the condition with a doctor, counselor, or support group can significantly reduce anxiety.

2. Vision Therapy and Low-Vision Rehabilitation

Improving how you use your remaining vision can sometimes reduce the impact of hallucinations and make daily life easier.

Low-vision services may include:

  • Magnifiers and special reading devices
  • High-contrast and large-print tools
  • Adaptive lighting for Michigan’s darker winter months
  • Mobility training for safe walking indoors and outdoors

Ask your ophthalmologist, optometrist, or low-vision specialist in Grand Rapids for a referral to low-vision rehabilitation services.

3. Simple Strategies to Interrupt Hallucinations

Some people find that changing what they are doing or altering their surroundings can help “turn off” or shorten a hallucination. Techniques may include:

  • Moving your eyes:
    • Shift your gaze from side to side or up and down.
  • Changing position:
    • If you’re standing, sit down; if you’re sitting, stand up or walk to another room.
  • Adjusting lighting:
    • If it’s dark, turn on a light.
    • If there is glare (common in winter with snow or summer with bright sun on the Grand River), soften the lighting or close curtains.
  • Blinking or closing your eyes briefly:
    • Some people find that closing their eyes for a few seconds, then reopening them, can reduce the image.
  • Engaging your other senses:
    • Turn on the radio, talk with someone, or touch real objects around you to help re-orient yourself.

While these strategies don’t work for everyone, they are safe to try and may provide some relief.

Living With Charles Bonnet Syndrome in Grand Rapids

If you or a loved one in Grand Rapids has significant vision loss and is experiencing visual hallucinations:

  • Tell your doctor or eye specialist.
    Don’t keep it to yourself out of fear or embarrassment.
  • Bring a list of what you see.
    Note how often it happens, what time of day, and what the images look like.
  • Ask about low-vision services.
    Many local providers partner with rehabilitation programs to help maximize remaining sight.
  • Consider counseling or support groups.
    Local mental health providers, senior centers, and organizations serving people with vision loss can offer emotional support.

Because Michigan’s long winters and shorter days can increase feelings of isolation, staying socially connected and active is especially important for older adults with CBS and vision loss in Grand Rapids.

Where to Get Help in Grand Rapids, MI

If you suspect you have Charles Bonnet syndrome or are concerned about visual hallucinations:

  • Your GP / Primary Care Doctor – first point of contact for evaluation and referrals.
  • Optometrist – for eye exams and vision assessment.
  • Ophthalmologist – for diagnosis and treatment of eye diseases.
  • Local Health Systems:
    • Spectrum Health / Corewell Health eye clinics
    • Trinity Health Grand Rapids
    • Metro Health – University of Michigan Health
    • Mercy Health and affiliated clinics
  • Public Health Resources:
    • Kent County Health Department – information on vision, aging, and mental health services.
    • Grand Rapids Public Health and local senior centers – may offer referrals to low-vision and counseling services.

If you experience sudden vision loss, new neurological symptoms (such as weakness, confusion, or difficulty speaking), or frightening hallucinations that you cannot distinguish from reality, seek urgent medical care at a Grand Rapids emergency department or call emergency services.

Key Points About Charles Bonnet Syndrome

  • Charles Bonnet syndrome causes visual hallucinations in people with significant vision loss.
  • It is common in older adults, especially those with conditions like macular degeneration and diabetic eye disease.
  • People with CBS usually know the hallucinations are not real, and their memory and thinking remain normal.
  • Diagnosis involves ruling out other causes of hallucinations, such as dementia, stroke, or mental illness.
  • In many cases, CBS improves or resolves within 12–18 months without specific medical treatment.
  • Vision therapy and low-vision rehabilitation can help people adapt to vision loss and may ease symptoms.
  • Education, reassurance, and support from Grand Rapids healthcare providers and community resources can make living with Charles Bonnet syndrome much less frightening.