When given a diagnosis of PPA, people naturally ask what will happen next. What challenges might they face and when? What support might be available?

While we try our best to provide general guidance on how abilities may change during the course of PPA, it is important to bear in mind that not everyone will experience the same symptoms or progress at the same rate. The experience of PPA will vary according to factors including age, general health and the specific type of PPA.

Early symptoms

Progressive non-fluent aphasia (PNFA)

• difficulties producing/pronouncing words – although the person knows what they want to say, speech may be slow and effortful, and is often distorted
• difficulties understanding long and complicated sentences
• problems with grammar – the person might start to miss out words or make mistakes with the words that they do use (for example, “I enjoy going swim”). These problems can be seen in writing as well as in speech

Semantic dementia (SD)

• not knowing the right word to use – often substituting a less precise word or vague term such as “thing” instead of the specific word
• problems understanding what words mean – the person might ask the meaning of particular words that they understood previously

Logopenic aphasia (LPA)

• difficulty with finding the right word – speech often contains long pauses or trails off while the person searches for the word they want to use
• getting parts of words mixed up, such as saying “comtuper” instead of “computer”

More information on the different forms of PPA can be found on the FTD Talk website.

There are many strategies that people living with PPA have found to be helpful in managing their symptoms. You can learn about some of these on our Living with PPA page. You may also find our FAQs section useful.

Community support

We run a PPA Support Group for everyone affected by all forms of PPA. This includes people with a diagnosis, carers, family and friends. Meetings provide an opportunity to meet others in similar situations as well as a range of professionals to get advice and support. Information on previous meetings can be found on our Meetings page.

As the symptoms of PPA can vary from person to person, it may be hard for people with PPA to receive the correct diagnosis. This can be frustrating and distressing. By increasing awareness and understanding of PPA, we hope to ensure that healthcare professionals and communities are better equipped to support people affected by a diagnosis of PPA. Help us by sharing your stories and contacting us at contact@raredementiasupport.org.

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