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Guest Blog – International collaboration: Managing primary progressive aphasia

Blog from Anna Volkmer

Guest Blog – International collaboration: Managing primary progressive aphasia

When working clinically I would regularly explain to my medical colleagues, often neurologists or neuropsychiatrists, what speech and language therapists can offer to people with dementia, particularly language led dementias such as primary progressive aphasia. I was surprised at how surprised the medics were – the medics didn’t often realise the breadth of the role of the speech and language therapist. And so had not tended to refer many of their clients to us. I would regularly scour the internet for reviews or summaries that I could send over as a reference, or to evidence what I was saying. Given there was very little research in this area, there were only a few reviews.

On commencing my research work, I realised that there might be an opportunity to put together an article that could go some way to achieving this goal of spreading the word about the role of speech and language therapy across the medical professions. Dr Jonathon Rohrer, a neurology consultant and MRC Clinical Scientist at UCL Dementia Research Centre and I came up with the idea of bringing together a whole group of speech and language therapy clinical academics from across the UK, Australia and USA who we thought might like to contribute, with support from some of their neurologist colleagues. And so, after a bit of rallying the troops we were able to put together this article which was published just recently in Practical Neurology:

Volkmer A, Rogalski E, Henry M, eTaylor-Rubin, C, Ruggero, Lm Khayum, R, Kindell, J, Gorno-Tempini, ML, Warren, JD and Rohrer, JD (2019) Speech and language therapy approaches to managing primary progressive aphasia. Practical Neurology doi: 10.1136/practneurol-2018-001921

The rest of this blog provides a bit of a summary of what we said (just in case you don’t have time to read the whole thing!):

Primary progressive aphasia (PPA) describes a group of progressive neurodegenerative disorders mainly associated with frontotemporal dementia (FTD), but more recently some PPA variants have also been linked to an underlying Alzheimer’s disease pathology. The diagnosis of PPA is usually made with the support of neuroimaging, such as either magnetic resonance imaging (MRI) or positron emission tomography (PET). PPA requires the presence of a progressive disorder where speech and/or language dysfunction is the predominant symptom.

Diagnosing the specific PPA variant can be a bit more complicated. The present diagnostic criteria describe three subtypes of PPA, semantic (svPPA, associated with TDP-43 protein), nonfluent or agrammatic (nfvPPA,associated with tau inclusion), and logopenic (lvPPA, most commonly an atypical Alzheimer’s disease) variants.

SLT interventions for people with PPA and their families        

There is currently no cure for PPA, and the disease continues to progresses over time. Speech and language therapists (SLTs) across the world have worked for many years on tailored programmes for people with PPA, and multiple intervention approaches have emerged:

Impairment-based interventions

A number of studies have demonstrated that word retrieval interventions can be helpful for people with PPA. Targeting useful, individually-tailored sets of words, with pictures of participants’ own items, in daily sessions and at home,  have been found to promote relearning and maintenance of these words. Script training involves repeated rehearsal, with the goal of improving making the script automatic, and thus clearer and has been found to be particular effective for people with nfvPPA.

Compensatory-based approaches

There is less research to date on functional communication focused interventions for people with PPA. Communication skills training for people with PPA and their families, and Augmentative and Alternative Communication (AAC) aid development are the two main areas that research has focused on here.

Group education and support

Group education is another really useful approach that can provide individuals with the opportunity to both practice communication strategies as well as gain peer support.

Current barriers to provision of SLT services across the UK, USA and Australia

There are a lot of people living with PPA who are never referred to SLT. This may because of a lack of awareness of the breadth of the SLT role, the limited availability of SLT services for people with PPA, the lack of research evidence on speech and language interventions for PPA (and thus a lack of professional guidance in this area), and finally the more complicated issue of commissioning.

Future priorities

Some of the future priorities in this area of practice including education of all healthcare professionals on the role of the SLT in PPA and the development of evidence-based speech and language therapy clinical practice guidelines. Developing evidence based resources, and exploring how they could be creatively delivered e.g. video conferencing,  to meet the needs of people with PPA and their families is extremely important.

So do spread the word about this article! Medical professionals should consider referring their clients with PPA to speech and language therapy at any point during their journey. There are a range of evidence based speech and language therapy options available that can meet the diverse needs of people with PPA and their families. And here is the link again:

https://pn.bmj.com/content/early/2019/07/28/practneurol-2018-001921


Author

Anna Volkmer is a Speech and Language Therapist and NIHR Doctoral Research Fellow working in Language and Cognition, Department of Psychology and Language Sciences, University College London. Anna is researching Speech and language therapy interventions in language led dementia.

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