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

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Retired psychiatrist Scott Cunningham was diagnosed with posterior cortical atrophy (PCA) in December 2020, after years of difficulties with visual and spatial tasks. His account, shared with his wife Anne in a Being Patient interview, illustrates how PCA symptoms can be mistaken for problems with eyesight and how diagnosis and care decisions can unfold.

Scott Cunningham was diagnosed with posterior cortical atrophy (PCA) in December 2020, after years of trouble with tasks involving vision and spatial processing, according to an interview published by Being Patient. Cunningham and his wife, Anne, described a path that included cataract procedures before an ophthalmologist recognized that his eyeballs appeared healthy and that the difficulty might have another cause.

Cunningham, a retired psychiatrist who practiced for 40 years, recalled struggling to cut a board straight and assemble a log rack despite having managed similar tasks before. Anne said some changes had become noticeable to her around six or seven years before the interview. He also described giving up detailed household financial work on a computer and finding board games increasingly difficult, particularly when he had to interpret or turn shapes.

He initially sought help for what he thought was a vision problem. An ophthalmologist suspected cataracts, and Cunningham underwent cataract removal in both eyes. He said his vision was somewhat better afterward but still did not feel right. At a later visit, the ophthalmologist told him his eyeballs appeared normal, a distinction that helped shift attention away from the eyes themselves. The interview says a brain scan later confirmed his PCA diagnosis.

The couple also discussed what followed. Cunningham said he learned he carries two copies of the ApoE4 gene and is participating in the third year of a five-year gene therapy clinical trial. According to the interview, his neurologist advised against anti-amyloid treatment because of his ApoE4 status. The report does not provide further clinical details about that decision or the trial’s design or results.

Why PCA Can Be Hard to Recognize

PCA can affect how a person interprets visual information and spatial relationships, rather than beginning with the memory problems many people associate with Alzheimer’s disease. The Being Patient report says people with PCA may have difficulty reading, judging distances, or finding objects even when their eyesight is relatively normal. That difference can complicate the route to diagnosis: symptoms may first appear during everyday activities or prompt an eye examination.

The Cunninghams’ account also shows the personal consequences of a prolonged search for an explanation. Tasks that Scott had previously managed became frustrating, and he described feeling demoralized when he could no longer take part in a family board game in the same way. Their experience underscores why clinicians’ consideration of visual and spatial changes may matter, while remaining one couple’s account rather than evidence about every person with PCA.

From Eye Concerns to PCA

Posterior cortical atrophy is described in the report as a rare form of Alzheimer’s disease that tends to affect visual and spatial processing early. The term does not mean that the eyes themselves are necessarily damaged: difficulties can arise in the brain’s processing of what a person sees. The interview notes that some people with PCA first consult eye specialists, which can delay recognition of the underlying condition.

Scott’s account traces a gradual change rather than a single clear onset. Early problems included hands-on tasks and computer work; later, family games became harder. He had no known family history of Alzheimer’s, he said. Being Patient identified the interview as part of its “Journey to Diagnosis” series and disclosed that the series was sponsored by Eisai, adding that the sponsor did not choose guests, shape questions, or review the interview before publication.

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

— Scott Cunningham, in an interview with Being Patient

Questions Beyond the Interview

The interview recounts the Cunninghams’ experience but does not give a full medical record, the specific scan findings, or the clinical criteria used to establish Scott’s diagnosis. It also does not explain the neurologist’s reasoning in detail for advising against anti-amyloid treatment, or provide enough information to assess the gene therapy trial’s safety, effectiveness, or goals. The report says Cunningham is in the trial’s third year, but does not give trial results.

Anne said that vision services are often missing from PCA care, but the interview does not provide data on access to those services. The couple’s account cannot establish how frequently PCA is initially mistaken for an eye condition or what diagnostic pathway is typical. Those questions remain outside the material provided in the report.

Trial and Care Questions Ahead

Cunningham’s five-year gene therapy trial was ongoing at the time described in the interview; the report does not state when it will end or when results may be available. No new clinical findings or treatment recommendations are reported. His care and trial status should be understood as personal details from the interview, not guidance for other patients.

The couple’s account points to continued questions about how PCA is recognized and what practical support people need when visual processing changes affect daily life. For readers facing similar symptoms, the interview is not a diagnostic tool; concerns about vision, cognition, or daily functioning should be discussed with qualified health professionals.

Key Questions

What is posterior cortical atrophy?

PCA is described in the Being Patient report as a rare form of Alzheimer’s disease that often affects visual and spatial processing. It can make tasks such as reading, judging distances, or locating objects difficult even when eyesight is relatively normal.

When was Scott Cunningham diagnosed?

The report says Cunningham received his PCA diagnosis in December 2020, after symptoms had developed over several years.

Why did he first seek eye care?

Cunningham thought his difficulties might be related to his vision. An ophthalmologist suspected cataracts, and he underwent cataract removal in both eyes, but he continued to feel that something was not right.

What treatment or research is he receiving?

The interview says Cunningham carries two copies of the ApoE4 gene and was in the third year of a five-year gene therapy clinical trial. It also says his neurologist advised against anti-amyloid treatment because of his ApoE4 status; the report does not provide further clinical detail.

Source: rss