What Is Posterior Cortical Atrophy? One Couple’s Road To Diagnosis

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Retired psychiatrist Scott Cunningham received a posterior cortical atrophy diagnosis in December 2020, after years of difficulties with tasks involving vision and spatial processing. His and his wife Anne’s account describes how symptoms were mistaken for an eye problem and highlights diagnosis and care challenges, including access to vision support.

Retired psychiatrist Scott Cunningham was diagnosed with posterior cortical atrophy (PCA) in December 2020, after years of worsening difficulty with tasks such as reading clocks, cutting wood and interpreting shapes. In an interview with Being Patient, Scott and his wife, social worker Anne Cunningham, describe how the symptoms initially appeared to be an eye problem, illustrating why this rare Alzheimer’s-related condition can take time to identify.

Scott said his difficulties began subtly, around six or seven years before the couple discussed them in the interview. He had trouble cutting a board straight and assembling a log rack, tasks he had previously managed. He also found computer-based financial record-keeping increasingly difficult and eventually stopped handling it. At the time, he did not connect these changes to a neurological condition.

Concerns about his vision led him to an ophthalmologist, who initially suspected cataracts. Scott underwent cataract removal in both eyes but said his sight still did not feel right. He also found board games harder to play, especially one involving recognizing and turning shapes. The ophthalmologist eventually told him that his eyeballs appeared normal, helping point away from an eye condition as the explanation. A brain scan later confirmed the PCA diagnosis, according to the couple’s account.

Scott said he learned the diagnosis through a patient portal before he had spoken with a doctor about it. He later learned that he carries two copies of the ApoE4 gene and joined a five-year gene therapy clinical trial; the source says he was in its third year at the time of the interview. His neurologist advised against anti-amyloid treatment because of his ApoE4 status, according to the couple. The material does not specify the trial’s name or report its results.

When Vision Changes Have a Brain Cause

PCA can affect how a person interprets visual information and spatial relationships even when the eyes themselves are relatively healthy. Scott’s account shows how this pattern may interfere with everyday activities—from reading a clock to following instructions—and why people may first seek help from eye-care professionals.

The couple also describe the personal consequences of unexplained difficulties. Scott said being unable to participate in a familiar family game was demoralizing. Anne said vision services are often missing from PCA care. Their experience is one couple’s account, not evidence that every patient follows the same path, but it points to practical concerns that can arise while families seek an explanation and adapt daily routines.

How the Diagnosis Took Shape

Posterior cortical atrophy is a rare form of Alzheimer’s disease that tends to affect vision and spatial processing before memory, according to the Being Patient report. People may have difficulty reading, locating objects, judging distances or understanding what they see, even if their eyesight is relatively normal. The supplied account does not give prevalence figures or describe how often PCA is mistaken for an eye disorder.

Scott had practiced psychiatry for 40 years and said there was no known Alzheimer’s history in his family. He recalled that early changes were easy to explain away; Anne, however, noticed problems that concerned her. The couple’s account traces a gradual course from difficulties with practical tasks and computer details to eye appointments, cataract procedures and, ultimately, brain imaging and diagnosis.

The Being Patient series was sponsored by Eisai. The publication stated that the sponsor had no role in choosing interview guests, shaping questions or reviewing the conversation before publication. The interview also covered treatment decisions and ways Scott has adapted to remain independent, though the supplied material does not detail all of those practical changes.

“I found that I couldn’t do some work that normally I could do easily, like cut a board in half.”

— Scott Cunningham

Treatment and Trial Details Remain Limited

The supplied report does not name Scott’s gene therapy trial, describe its design or provide results. It also does not say whether his condition has changed since the interview. His neurologist’s advice against anti-amyloid treatment is reported as specific to Scott and his ApoE4 status; the source does not establish that the same decision applies to other people with PCA.

The material does not detail the full diagnostic work-up beyond the brain scan, nor does it identify which vision services were unavailable or what services Scott received. The timing of the interview is also not provided, so the stated third year of the five-year trial cannot be tied to a precise date.

Trial Follow-Up and Daily Support

According to the interview, Scott was continuing in a five-year gene therapy clinical trial and was in its third year at the time he spoke with Being Patient. The supplied material gives no schedule for later trial updates or information about when results might be reported.

For the couple, the ongoing priorities described in the report include adapting daily activities and addressing vision-related needs. No further appointments, treatment decisions or developments are specified. The account leaves open how Scott’s trial will progress and whether additional support services will become available to him.

Key Questions

What is posterior cortical atrophy?

Posterior cortical atrophy (PCA) is a rare form of Alzheimer’s disease that often first affects visual and spatial processing rather than memory. It can make reading, finding objects or judging distances difficult even when eyesight is relatively normal.

How was Scott Cunningham diagnosed?

After years of difficulties with visual-spatial tasks and eye appointments, a brain scan confirmed Scott’s diagnosis in December 2020, according to the couple’s account.

Why did Scott see an eye doctor first?

His difficulties seemed connected to vision, and an ophthalmologist initially suspected cataracts. Scott had cataract removal in both eyes, but he said his vision still did not feel right; the ophthalmologist later observed that his eyeballs appeared normal.

What treatment is Scott receiving?

The report says Scott was in the third year of a five-year gene therapy clinical trial at the time of the interview. It does not name the trial or report results. His neurologist advised against anti-amyloid treatment because of his ApoE4 status, according to the couple.

Source: rss