People living with PCA have symptoms that can vary from person to person and can change over time. Most people will have problems with their vision first, but some people may have problems with dressing, handwriting, coordination, numbers, and language too.
- People may struggle to recognise objects out of the corner of their eye or might see many different objects close together as one object.
- Surfaces and depth can look different. For example, a black object or puddle may appear to be a hole in the floor, or it may be difficult to find and reach for a door handle.
- People may not always be able to see what is right in front of them and may bump into things.
- Things may appear to have an unusual colour, appear distorted or look like they are moving around.
- People may still see an image of an object after looking away, or not be able to see more than one object at a time.
I was initially told by my doctor that I was suffering from stress; but I knew otherwise. Objects were becoming less recognisable to me, and driving was getting very stressful. I got my eyes checked but was told they were fine.
I was eventually diagnosed with posterior cortical atrophy. With PCA, opticians often find nothing wrong with a person’s vision. This is because PCA damages the brain and not the eyes directly.
- Valerie, who lives with PCA
People with PCA also have problems with:
- Reading: Losing their place on a page, missing out lines, letters jumbling up or finding it hard to read certain fonts and handwriting. This can also affect everyday tasks like putting in a PIN on a cash machine.
- Judging distances and depths: Crossing roads and using escalators or stairs can become difficult. Moving around can also be difficult if there are lots of shadows, lights or patterns. A person may reach out to grasp an object but miss it.
- Spatial awareness: Some people may struggle with their sense of direction and terms like ‘left’ and ‘right’ may be harder to follow.
- Recognition: Problems recognising objects or faces, especially when they are not in plain sight. People may experience problems reading clocks or signs, especially digital clocks or screens.
- Light sensitivity: Finding bright light uncomfortable, including glare from shiny surfaces. People may have unusual colour experiences such as seeing patches of colour when it is dark.
- Coordination: Problems with dressing, for example, having difficulty using buttons or zips, locating the sleeves of a jacket while dressing, or putting clothes on back to front. Objects like kitchen utensils and remote controls may become difficult to use.
- Literacy: Finding spelling and writing hard. People can find it difficult to remember the shape or name of certain letters.
- Numeracy: Problems with simple calculations and dealing with money such as small change.
- Mood: Some people become low in mood, irritable or anxious, or may lose interest in things.
We initially put it down to depression, but then we started notice more worrying changes like hitting a lampost while driving her car or putting odd objects in the fridge or washing machine. Within the first year of mum's diagnosis she didn't know what day, week or year it was. She also lost the ability to read, write or draw which were her favourite things as a fine artist.
- Hat, whose mum was diagnosed with PCA
In PCA, the damage to brain cells spreads through the brain over time. This means that eventually a person’s memory, speech and problem-solving skills will be affected too. As symptoms progress, people will need more support in their daily life and help to look after themselves. This can take several years, but each person’s progression is different and unique.
What is posterior cortical atrophy?
Find out more about the symptoms and causes of posterior cortical atrophy, and the treatments currently available.
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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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