A diagnosis of posterior cortical atrophy (PCA) raises many questions, challenges and uncertainties.
Our Advice page is designed to signpost you to some of the practical, financial and legal support you may be eligible for if you are affected by PCA. We have gone into more detail on support for all rare dementias on our General Advice page.
For advice on coping strategies for living with PCA, such as visual aids and adapting your home, please visit our Living with PCA page.
Talking about your diagnosis
Knowing when and how to tell family, friends and colleagues about a diagnosis of PCA can be difficult. It can take time for people to understand and come to terms with a condition they have never heard of before. There is no right or wrong time to tell those around you, and you will know best when it feels right for you.
It could be helpful to talk this through with members of our support groups who have been in a similar situation. For more information on upcoming PCA support group meetings in your area, please visit our Meetings page.
Finding the right language is also important when telling those close to you. We have made a short film narrated by those living with PCA that might help you to describe and explain your experiences. Watch film ‘Do I see what you see?‘.
There are some further resources to support you in talking about your diagnosis on our General Advice page.
Benefits
There are some specific benefits and financial support you may be entitled to if you have received a diagnosis of PCA. We have detailed some of these below, and you can find more information and useful links on our General Advice page.
Getting registered as sight impaired
If you are registered as blind or partially sighted you may be eligible for additional support and reductions on certain services, such as a Disabled Person’s Railcard or a reduced price on local travel. It also provides additional support for disability benefits applications.
You need to be seen by a consultant ophthalmologist to assess whether you qualify for being registered either partially sighted or blind.
Please contact RNIB Helpline (0303 123 9999 / helpline@rnib.org.uk) for further advice.
Applying for a Blue Badge
If you are living with a diagnosis of PCA, you may be entitled to a Blue Badge. This entitles you to special parking privileges. For more information on eligibility and how to apply, visit the gov.uk website.
This applies to people living in England, but there are further links provided in the above link for those living in Northern Ireland, Scotland and Wales.
Legal affairs
It can be difficult to navigate the legal implications of a PCA diagnosis for you, your family and friends.
As some people with PCA experience changes in their cognitive abilities and handwriting difficulties, including with signing their signature quite early on, it can be especially important to think about dealing with legal matters as early as possible. For example, arranging a lasting power of attorney (LPA).
For more information on arranging lasting power of attorney please visit our General Advice page.
Driving
Due to their visual impairment, most people living with PCA will have difficulties with driving quite early on in their experience of the diagnosis. If you have been diagnosed with PCA, or any other form of dementia, you have a legal responsibility to inform the Driver and Vehicle Licensing Agency (DVLA) about your diagnosis. You should also inform your car insurance company.
The Medical Advisory Branch of the DVLA decides whether you can continue to drive using the information provided by you and your GP or hospital consultant.
You can find out more about driving and transport support on our General Advice page.
Employment
It is important to remember that although receiving a diagnosis of dementia can have an impact on your employment, it does not always mean that you cannot continue to work or contribute to society in other ways.
For more information on how employment may be affected by a diagnosis of PCA, please see our General Advice page.
