A spotlight on PCA for rare disease day


For rare disease day our Head of Service Delivery, Sue Hinds, puts a spotlight on one of the rarer types of dementia, Post Cortical Atrophy (PCA). Sue is a Speech and Language Therapist who has experience of working in the NHS within memory assessment services, community mental health teams, and mental health inpatient services.



Post Cortical Atrophy (PCA) is one of the rarer forms of dementia and starts with a loss of cells (atrophy) at the back (posterior) of the brain (cortical). It is also known as Benson’s syndrome and in most cases, has the same cause as Alzheimer’s disease. As it has the same cause it is sometimes referred to as an atypical variant of Alzheimer’s disease. It starts in a different part of the brain to Alzheimer’s which is why there are differences in the early symptoms and the type of difficulties that someone experiences.


Like all the dementias, PCA is progressive. To begin with it is restricted to the back of the brain, but as it progresses other areas of the brain can become affected and increase the challenges for the person living with the condition and the people supporting them. The symptoms of PCA are often experienced at an earlier age than Alzheimer’s disease (often start for a person in their 50’s) but it can also affect older people.


The back of the brain is responsible for processing the visual information we receive and for our motor movements. Therefore, the first symptoms of this dementia are not memory or language but difficulties in vision, interpreting visual information, literacy and numeracy  and/or in the movements and use of objects needed for everyday tasks. This different presentation is one reason that people with PCA often see many different professionals and have to wait for longer before a diagnosis is reached.  For example, someone with PCA might think there is a problem with their eyes and start with a visit to the opticians, but the problems aren’t with the health of the eye – the problems are with the back of the brain making sense of what the healthy eye is seeing. These symptoms are often very difficult for the person to explain in the early stages and knowing which is the right service to access can be difficult. Often people find it takes between one and three years to reach a diagnosis, causing the person and their families frustration and worry.

More information is available about PCA here.



For those caring for someone with PCA


Friends and family members have told us that it can be challenging to support and understand some of the behaviours of the person with PCA without having services available to help them learn about what is happening.


Sometimes your needs and experiences may go less acknowledged or understood by friends, families and professionals than those of the person with PCA.


As a partner, friend or family member it can be very emotional if you are not recognised by the person with PCA. Try to remember this is the brain having difficulty interpreting what the eyes are seeing. It can also be difficult to understand why they can’t see what you see, or do the things they could do before which seem like simple everyday tasks to you.


It is important to have time to focus on your own needs and experiences rather than feeling that you are an add-on to the needs of the person with dementia. You may be facing various challenges which increase over time or change in nature, and this can be very difficult. You might want to talk to other people about it but may be held back because you are worried that nobody else can understand.  Most people with dementia are older and so if you are a ‘young’ family you can feel particularly isolated, as there are few services set up specifically for you. You may still be working, the person you care for may have had to give up work themselves, you may have needed to give up work or you may have had to start work to help with the finances, you may be taking care of a parent and still be at school or University. A change to household finances may be causing more worries for you or you might be overrun with tasks you need to complete and forms to fill in.


All these changes can change the personal dynamics and relationships and impact on your own wellbeing. Employers and teachers need to support you when you have caring responsibilities outside of work, school or university so that you can be better equipped to care and to help support your own health and wellbeing.


We offer a variety of courses designed and run by health care professionals who have experience supporting people with dementia and their families. Our courses are beneficial for your hands-on caring role and psychological well-being. We run a three-day residential course which will build your knowledge about dementia in a supportive environment and provide practical advice and guidance. Our sessions developed by psychologists will help you build your resilience so you can survive and grow through the most challenging of times. Our session on rights and benefits will also help you to navigate the financial impact of your situation and understand what you are entitled to. We will help you to choose a course that suits your needs and wherever possible we will try to match you with a course where there are other people supporting someone with PCA.


You can find more information on our free courses for partners, family and friends taking care of someone with dementia here. As well as three-day courses, we run a range of one-day courses that cover specialised subjects in greater depth. Including the topics: mealtimes and swallowing; feeling secure in relationships; managing agitation; and continuing communication with someone living with dementia. Please book your free place on our website, by calling us on 020 3096 7895, or emailing us at support@dementiacarers.org.uk.