We need you: Calling all SLTs who see people with Progressive Aphasia!

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We need you! I am looking for speech and language therapists who have worked with people with diagnosed or probable primary progressive aphasia (PPA) and fronto-temporal dementia. If you have had people with this diagnosis on your caseload please complete the survey – accessible via this link:

https://opinio.ucl.ac.uk/s?s=42060

PPA (a type of dementia) is a progressive language impairment. It is often diagnosed when people are in their 50s and 60s. Speech and language therapy services provided to this group are variable, anecdotally I have heard these services may be funded by different parts of a trust if at all.

It is difficult to know what speech and language therapists actually do in clinical practice for people with PPA or fronto-temporal dementia due the limited evidence available in this field. As mentioned we do know that this is typically a younger onset dementia, so people are often still working and living busy lives when they are looking for a diagnosis. There is some evidence that naming therapies can maintain people’s language. By naming therapies I am referring to tasks which require the person with primary progressive aphasia to do daily exercises (a bit like drilling) which may include naming pictures, describing their function, listening to or writing the word down, picking out the first and last syllable or sound, rhyming the word or repeating the word. But people with PPA and fronto-temporal dementia have other communication needs.

Last summer I was awarded an NIHR Doctoral Research Fellowship to complete a PhD at UCL, supervised by Dr Suzanne Beeke and Dr Aimee Spector. My research will focus on refining and piloting an intervention for people with PPA.

The first stage of my research is to conduct a survey of current speech and language therapy practices across the UK. If you work with adults with neurological conditions and have seen someone with PPA in the last 24 months please complete my survey. The link is:

https://opinio.ucl.ac.uk/s?s=42060

I am currently only planning to keep the survey open for the next couple of months so please do distribute and respond if you are able.

It is important that we understand what is happening across the speech and language therapy profession for this client group. Dementia and the early onset variants of dementia such as PPA may be one of the biggest expanding areas for us as a discipline. The next stage of my research as I develop an intervention will be to ask people with PPA themselves what they would like speech and language therapy to focus on as I go on to develop a suitable intervention program.

You can follow the project on my blog or on twitter @volkmer_anna.

Or email me at: a.volkmer.15@ucl.ac.uk for more information.

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