- problems with reading
- issues with recognition
- difficulty with coordination
- issues with judging distances
- light sensitivity
The symptoms of PCA usually begin before the age of 65 and and people are often in their mid-50s or early 60s when they first experience symptoms. However, PCA can also affect older people and it can take a long time for people to receive the correct diagnosis.
Causes of Posterior Cortical Atrophy (PCA)
Posterior cortical atrophy (PCA), meaning "back of the brain shrinkage," refers to the progressive loss of brain cells, particularly in regions responsible for processing visual and sensory information, such as the occipital and parietal lobes.
In most cases, PCA is caused by changes in brain cells similar to those seen in Alzheimer’s disease. However, its initial symptoms differ because PCA primarily affects vision-related areas rather than memory. People with PCA often retain their memory and language abilities in the early stages but experience progressive difficulties with vision, spelling, writing, and arithmetic.
Other conditions that can cause PCA include:
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Lewy Body Dementia (LBD) – May cause visual hallucinations, stiffness, and slowed movements, similar to Parkinson’s disease.
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Corticobasal Syndrome (CBS) – Can lead to difficulty using one side of the body or jerky, slow movements.
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Prion Diseases (e.g., Creutzfeldt-Jakob Disease (CJD)) – Very rare conditions that may cause a rapid cognitive decline.
Little is known about why PCA affects some people and not others or how many people live with it. Ongoing research continues to improve our understanding—learn more [here].
Diagnosis
The early signs of PCA are often subtle and difficult to describe. Many people first notice vision problems and seek help from an optician. However, because PCA affects how the brain interprets visual information—rather than the eyes themselves—an optician may not identify the true cause.
Other early indicators may include difficulties with spelling, numeracy, and learned motor skills.
Even after being referred to a specialist (such as a neurologist, psychiatrist, or neuro-ophthalmologist), it can take 1 to 3 years to receive a formal diagnosis. This delay often leads to frustration for those affected.
Raising awareness of PCA among opticians, ophthalmologists, GPs, and other healthcare professionals is crucial to improving early diagnosis and support. By increasing understanding, we can better equip communities and healthcare providers to assist those affected.
If you have a PCA diagnosis or are supporting someone who does, we encourage you to share your story. Contact us at [support@guardiansupportservices.co.nz] or connect with the community.
Testing for PCA
There is no single test for diagnosing PCA. However, several assessments can help rule out other conditions and confirm a diagnosis:
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Specialised visual tests (conducted by eye specialists)
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Neuropsychological tests to assess cognitive functions like memory, visual perception, and literacy
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Blood tests
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Brain scans (MRI or CT) to detect shrinkage in the affected brain regions
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Lumbar puncture to examine cerebrospinal fluid
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EEG to record brain activity
If you or someone you know is showing signs of PCA, talk to a GP for a referral to the appropriate specialist.
Your experience could help others. If you feel comfortable, share your story with the community—you never know who it might support.
Or you could join our community and share your experience there
