Listen to our information about getting a diagnosis of PCA or download the full audio

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Getting the right diagnosis is important so that people can get help and support. The symptoms of PCA can be very mild to begin with and difficult to describe. Because the condition is rare it can take some time to get the correct diagnosis, therefore seeking help for symptoms as early as possible is recommended.

At first, people with PCA might think they have something wrong with their eyes and visit their optician. The optician may find that they have perfectly healthy eyes, or people could wrongly be given glasses that do not help them. This is because PCA damages the brain, not the eyes directly.

If you are worried about yourself or someone else who is showing signs of PCA, it is best to talk to your doctor. They will carry out tests to find out what is causing the symptoms. These tests include:

  • Questions about your symptoms and medical history.
  • Speaking to your partner or someone close to you about the problems you are having.
  • A physical check-up.
  • A blood test to look for any other conditions that could be causing the symptoms.

If your doctor suspects PCA or another form of dementia, they may send you to a specialist clinic for further tests. These may include:

  • Tests to work out how your brain processes information from your eyes.
  • Memory and thinking skills tests.
  • Brain scans to look for damage or shrinkage. This may be an MRI or CT scan. You can find out more about brain scans here.
  • A lumbar puncture that involves taking a sample of fluid from the bottom of your spine. This test can help to identify abnormal levels of proteins linked to diseases like Alzheimer’s in the brain.
  • An EEG test, where sticky patches that measure electrical activity in the brain are placed on the headThis looks at how your brain cells communicate and does not hurt at all. The test takes about 20 minutes.

The results of all these tests will help a doctor to decide the likely cause of your symptoms and determine what type of dementia a person may have.

Hat H

The diagnosis definitely brought my family closer together. We adjusted and agreed to do whatever was needed to support my mum.

- Hat, whose mum was diagnosed with PCA

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This information was updated in April 2023 and is due to be reviewed in April 2025. It was written by Alzheimer’s Research UK’s Information Services team in association with Rare Dementia Support, with input from expert and lay reviewers. Please get in touch using the contact details below if you’d like a version with references or in a different format.

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