Beyond Diagnosis

Understanding Primary Progressive Aphasia (PPA)

Receiving a diagnosis of Primary Progressive Aphasia (PPA) can be frightening and confusing. This guide has been created by The Sophie Reid Neurological Association to help you understand your diagnosis, answer common questions and remind you that you are not alone.

What is Primary Progressive Aphasia?

Primary Progressive Aphasia (PPA) is a neurological condition that gradually affects language. It can make it harder to find words, understand language, read, write or speak clearly. It does not change who you are as a person, and many people continue to enjoy meaningful relationships and activities with the right support.

The different types of PPA

  • Semantic Variant – mainly affects understanding and remembering the meaning of words.
  • Non-fluent/Agrammatic Variant – mainly affects producing speech, making speech slow or effortful.
  • Logopenic Variant – mainly affects word finding and repeating phrases or sentences.

Recognising the symptoms

  • Difficulty finding the right word
  • Using the wrong word
  • Long pauses during conversation
  • Difficulty understanding complex conversations
  • Changes to reading and writing
  • Speech becoming slower or more effortfu

What happens after diagnosis?

  • Neurology follow-up
  • Speech and Language Therapy
  • Neuropsychology (where appropriate)
  • Counselling
  • Peer support
  • Planning for the future

Living well with PPA

  • Take your time communicating
  • Use notebooks, phones or communication apps
  • Maintain hobbies and routines
  • Stay socially connected
  • Accept support when needed

Communication tips

  • Speak slowly and clearly
  • Give extra time to respond
  • Reduce background noise
  • Counselling
  • Avoid interrupting or finishing sentences unless asked
  • Use gestures, writing or pictures if helpful

For family, friends and carers

Patience, understanding and encouragement can make a huge difference. Focus on the person, not just the words they are struggling to find. Communication may change, but relationships can continue to thrive.

Looking after yourself

  • Celebrate small achievements
  • Ask for help early
  • Look after your physical and mental wellbeing
  • Take regular breaks
  • Stay connected with people who understand

Support available in Jersey

  • SRNA free counselling
  • Peer support groups
  • Advocacy
  • Signposting
  • Education events
  • Future PPA support initiatives