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Primary Progressive Aphasia (PPA): What you need to know

Find out all the essential information about this form of frontotemporal dementia, including the causes and the symptoms

In a nutshell

Primary Progressive Aphasia is a form of frontotemporal dementia which affects the ability to speak, read, write and understand language. People with PPA have trouble expressing their thoughts or finding the right words. Although there’s currently no cure, there are lots of ways to help make life easier for a loved one who is living with PPA.

Four facts worth knowing

• Although it can affect people of any age, PPA is more common in adults under 65.
• PPA does not tend to be genetic, however in a small number of families it can be caused by a hereditary form of frontotemporal dementia, most commonly the progranulin gene (GRN).
• PPA is usually diagnosed by a specialist, not a GP, and will involve a series of tests as well as a brain scan.
• There are three different types of PPA – each affecting language skills in a slightly different way. These are called Semantic dementia (SD), Progressive non fluent aphasia (PNFA) and Logopenic aphasia (LPA).

Semantic dementia (SD)
People with SD usually maintain the ability to speak, but gradually lose the ability to remember the meaning of words, faces and objects. For example, your loved one might say ‘water’ instead of ‘milk.’ They may also have trouble recognising a once familiar object such as a kettle or a loaf of bread. They may not recognise a person they don’t see regularly.

Progressive non fluent aphasia (PNFA)
People with PNFA tend to retain the ability to understand the meaning of words but have difficulty using the words they want to say. This can result in them speaking very slowly and they could find talking to a group of people, or on the phone, extremely difficult.

Logopenic aphasia (LPA)
This was very recently identified as a form of PPA. People with LPA tend to speak slowly but quite fluently, they understand simple words but will have lots of trouble with repetition and great difficultly naming objects.

What actually happens if you have Primary Progressive Aphasia?

PPA starts in the frontal or temporal lobes of the brain, and occurs when nerve cells in language-related parts of the brain malfunction. The symptoms of PPA usually start very gradually and progress slowly, and can be very frustrating for the person who has it.
However, in the early stages, memory, reasoning and judgement don’t tend to be affected which means many people with PPA can continue leading active, independent lives for several years. Eventually however, verbal communication does tend to become very difficult and other symptoms, such as memory loss, become increasingly noticeable.

Want to help someone who is living with Primary Progressive Aphasia (PPA)?

Here’s what NOT to do:
DON’T interrupt or ‘guess’ a word they’re trying to find – unless they ask for your help.
DON’T pretend to understand what they’re saying if you don’t – ask them to repeat it instead.
DON’T correct or point out every mistake they make.
DON’T ask open questions such as, ‘what would you like to drink?’ Instead, offer a choice, ‘would you like tea or coffee?’ which they should find easier to answer. You could use picture flashcards to help.

Did you know?
Monty Python star Terry Jones was recently diagnosed with Primary Progressive Aphasia. Although now unable to give interviews, he continues to live well and enjoy life.