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A Being Patient report profiles Andrew Reid, who was diagnosed with posterior cortical atrophy (PCA) at 56 after visual and spatial difficulties were initially misattributed. PCA affects the brain’s processing of visual information rather than the eyes; Alzheimer’s is its underlying cause in about 80% of cases, according to the report. Diagnosis and treatment remain challenging, and evidence for PCA-specific drug benefits is limited.
PCA is a syndrome in which progressive changes affect brain regions involved in visual and spatial processing. The report stresses that the resulting problems are not necessarily caused by an eye disorder: people can struggle to read, judge distances, recognize objects or faces, find their way around, and cope with bright light even when an eye examination does not explain their difficulties.
Reid first had trouble seeing his keyboard and writing work emails. He later zoned out at an intersection while driving with his family, prompting an emergency department visit and an epilepsy diagnosis. After about a year of treatment without resolving the symptoms, he was assessed at a brain clinic and diagnosed with PCA. He had also visited an optometrist three times, the report says, without an eye problem being identified as the cause.
Everyday activities can become harder as the syndrome progresses. Reid’s wife, Karina Reid, told Being Patient that eating had become more challenging because he could lose the image of a fork. The report says PCA may also interfere with dressing, brushing teeth and positioning the body to sit. In later stages, symptoms may extend to memory, speech, language and executive function.
Why Visual Symptoms Delay Diagnosis
PCA matters because its early symptoms can send people toward eye care or other explanations before clinicians recognize a brain-based condition. The report says the average age of symptom onset is 59, and that the unusual presentation can contribute to diagnostic delays lasting years. A missed or delayed diagnosis can leave people and families without an explanation for growing difficulties with work, driving and daily tasks.
The diagnosis also affects what support is useful. Keir Yong, the chief investigator of a University College London longitudinal study on PCA, told Being Patient that services designed around memory problems may not fit people whose main challenges involve movement, dressing and feeding, while memory and insight may remain relatively intact. This can make practical, individualized support particularly relevant.
For readers, the report is not a basis for self-diagnosis: visual difficulties have many possible causes. Its central point is that persistent problems with visual interpretation or spatial tasks may warrant assessment beyond a routine eye examination, especially when an eye condition does not account for them.
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How PCA Differs From Typical Alzheimer’s
PCA describes a pattern of symptoms, not a single underlying disease. According to the report, Alzheimer’s disease accounts for about 80% of PCA cases. Other reported causes include dementia with Lewy bodies, prion disease and other neurodegenerative conditions. The syndrome is associated with changes affecting the back of the brain, where visual and spatial processing takes place.
Assessment can involve a detailed eye examination to rule out eye diseases, blood tests for other metabolic causes, cognitive testing and brain imaging focused on the relevant brain regions. Blood or cerebrospinal fluid tests and amyloid PET imaging may help determine whether Alzheimer’s is the cause, the report says. These investigations help distinguish a brain-processing problem from other conditions that affect sight; the appropriate evaluation depends on the individual.
Treatment depends in part on the underlying cause. Doctors may use Alzheimer’s symptom-targeting medicines such as cholinesterase inhibitors, or levodopa when PCA is associated with dementia with Lewy bodies. The report says evidence for these drugs specifically in PCA is limited. Alzheimer’s medicines Leqembi and Kisunla may be considered for eligible people with Alzheimer’s-related PCA, but research on their benefit for this group is also limited.
What Diagnosis and Treatment Cannot Yet Show
The report does not provide a precise estimate of how long diagnosis takes across all people with PCA; it says delays can last years and that some people may not receive a diagnosis before symptoms become more widespread. It also describes an optometrist screening test being developed with the UK Biobank and undergoing validation across eye and neurology clinics. Its accuracy, availability and eventual role in routine practice are not yet established in the report.
There is no cure for PCA, and the source says evidence for treatments in PCA specifically remains limited. A 2026 study cited by Being Patient found that most people with atypical Alzheimer’s forms, including PCA, may not qualify for certain Alzheimer’s drugs. The report identifies visual and spatial demands in cognitive tests as a common reason, but does not give the study’s sample size or detailed eligibility data. How much eligible people with PCA benefit from those medicines also remains unclear.
Screening Research and Practical Support
Yong is working with the UK Biobank on an optometrist screening test for PCA, which is being validated in eye and neurology clinics, according to Being Patient. The next reported milestone is whether that validation supports use of the test to identify people who may need further neurological assessment; the source gives no timeline or results.
For people already diagnosed, care is tailored to symptoms and the suspected underlying disease. The report notes that services may not be set up for PCA’s particular needs, including navigating spaces and managing dressing or meals. It says physical and occupational therapy are among the approaches relevant to practical challenges, while research continues. No specific new treatment approval or clinical result is announced in the report.
Key Questions
What is posterior cortical atrophy?
PCA is a syndrome involving progressive difficulty processing visual and spatial information. It affects how the brain interprets what the eyes see, rather than necessarily reflecting a problem with the eyes themselves.
Does PCA always mean Alzheimer’s disease?
No. Being Patient reports that Alzheimer’s is the underlying cause in about 80% of cases. Other reported causes include dementia with Lewy bodies, prion disease and other neurodegenerative conditions.
How is PCA assessed?
Assessment may include a detailed eye examination, blood work, cognitive testing and brain imaging. Blood or cerebrospinal fluid tests and amyloid PET imaging may help identify Alzheimer’s as the underlying cause. Evaluation varies by person and should be guided by qualified clinicians.
Is there a cure or a proven PCA-specific treatment?
The report says there is no cure and that evidence for drug treatments specifically in PCA is limited. Doctors may consider medicines based on the underlying condition and eligibility, alongside support for day-to-day difficulties.
Why can PCA take a long time to diagnose?
Early symptoms can resemble eye problems or other conditions, and PCA differs from dementia presentations centered on memory. The report says this can lead to referrals and explanations that do not identify the brain-based cause.
Source: beingpatient.com
