Posterior cortical atrophy: What is it and is it dementia?

What is posterior cortical atrophy?

Posterior cortical atrophy (PCA) is a neurodegenerative condition. Also known as Benson’s syndrome, the condition causes brain cells in the back of the brain (posterior) to die over time.

It is this part of the brain that is responsible for visual processing; how we see and how we ‘understand’ the ‘information’ that we see. So although the condition doesn’t actually impact on a person’s sight, damage to the brain cells in the back part of the brain affects how they process or make sense of the things they see.

PCA and dementia

Posterior cortical atrophy is classed as a rare form of dementia. Often referred to as the ‘visual variant of Alzheimer’s’ or ‘visual-spatial’ Alzheimer’s disease, the condition is mostly thought to be caused by Alzheimer’s, but is also linked to other types of dementia, such as Lewy body dementia.

PCA is most commonly diagnosed in people in their 50s and 60s and for this reason the condition also often comes under the term of early onset dementia, but this isn’t the case for every person.

Many people with PCA don’t initially make the link between their symptoms and dementia, as the way they present themselves are so different. This is down to where in the brain the condition begins; where typical dementia begins in the middle of the brain, which is responsible for memory, PCA, as we’ve mentioned, starts in the back of the brain, which is responsible for visual processing.

Because symptoms related to memory are so synonymous with dementia, it can take time for symptoms outside of this to be linked to the condition.

What are the symptoms of posterior cortical atrophy?

As with every condition, posterior cortical atrophy symptoms can differ from person to person, but there are a few characteristics that are commonly associated with the disease.

These symptoms include:

• A lack of coordination – this can cause difficulty with everyday tasks such as getting dressed or using day-to-day items, for example cooking appliances.
• Feeling detached from their own body – for example a person may be able to see their hands but not recognise them as their own.
• Problems with reading and speaking – finding the right word when talking or keeping their place on a page, for example.
• Difficulty carrying out simple calculations.
• Affected spatial awareness – such as difficulty differentiating between moving and still objects or judging distances.
• Visual hallucinations.
• Sensitivity to light.

The impact of the symptoms associated with PCA can have a big impact on a person’s mental health and they may experience anxiety, depression or hopelessness as they navigate through different changes.

These feelings can also prevent a person from reaching out for help, they may feel embarrassed or frightened of the future. If your loved one is experiencing symptoms of PCA, try to encourage them to visit a GP. Although challenging, understanding what different symptoms mean is usually better than the unknown.

How is PCA diagnosed?

Because posterior cortical atrophy is a rare condition, it can take time to get a diagnosis. As was mentioned, the symptoms of PCA can also contribute to this. People may seek help for confusion or problems with eyesight, or doctors may struggle to link the symptoms with PCA. This can result in a delayed or misdiagnosis.

With that being said, diagnosis of PCA continues to improve as knowledge of the condition increases.

Once PCA is suspected, there are a few different ways that a diagnosis can be achieved:

• Cognitive assessments – a mix of questions and exercises will look into how your brain is generally ticking over, this will typically include an assessment of visual-spatial awareness.
• Blood tests – to rule out any other conditions that could be causing the symptoms.
• MRI – a scan can help to identify any changes or anomalies in the brain.
• Spinal fluid tests – also known as a lumbar puncture, this test can identify the level of the proteins that cause Alzheimer’s disease.

For more information about how dementia is diagnosed, visit our article here.

Living with posterior cortical atrophy

Just like other types of dementia, there isn’t currently a cure for PCA and there are no treatments available right now that have been proven to slow down the condition.

With ongoing research this will hopefully be something that will change in the future, but for now, the focus is on helping a person to live well with PCA.

If you, or a loved one, are living with PCA, these things may help:

• Reach out for medical support – because PCA is rare, the guidance that is currently available is fairly limited, but your GP and other health professionals are there to support you through the process, whether you’re pre or post-diagnosis.
• Therapy – depending on the specific symptoms a person is experiencing, different types of therapy, such as physical or cognitive, can help to retain skills that have been affected by the condition.
• Home care or support – people with PCA may find carrying out certain tasks that they used to do with ease much more difficult. This can take a physical and emotional toll as they adjust to a new lifestyle. To help maintain quality of life and boost self-esteem and confidence, home care services will ensure they still have access to all the things they want to do, with the support of a care professional. 

Dementia can be a challenging time for both the person living with the condition as well as their friends and family. No matter what stage of the journey you are at, we have a range of articles to offer advice and guidance throughout.

If you’re looking for home care services, homecare.co.uk offers a search option where you can filter based on your location, the type of care you’re looking for and the highest review score. Visit the website to start your search.