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Better Conversations with Primary Progressive Aphasia: Coproduction of a conversation partner training programme with people with PPA, their families and speech and language therapists

Anna Volkmer1*, Jason D. Warren1, Aimee Spector1 and Suzanne Beeke1
  • 1 University College London, United Kingdom

Primary Progressive Aphasia (PPA) is a language-led dementia associated with Fronto-Temporal Dementia (FTD) and Alzheimer’s disease, characterised by slowly worsening speech and language difficulties (Marshall et al., 2018). Despite these impairments, research into the management of speech and language symptoms in PPA is limited. Until recently, this area was dominated by impairment focused interventions (Carthery-Goulart et al., 2013). Yet UK speech and language therapists (SLTs) report prioritising communication partner training (CPT) interventions when working with people with PPA, frequently using resources developed for people with post stroke aphasia (Volkmer et al, 2018a). Given the lack of PPA specific resources, this project aimed to develop a CPT intervention tailored to the needs of people with PPA, Better Conversations with PPA (BCPPA), in line with phase 1 of the Medical Research Council guidelines (Craig et al, 2008) on developing complex interventions. Two focus groups with a total of 11 people (five people with PPA and six communication partners) explored how speech and language therapists (SLTs) could best support people with PPA and their families to maintain conversations and relationships. Following thematic analysis (Braun and Clark, 2006), three themes were identified: 1. Timing of intervention, 2. SLT understanding of types of dementia and 3. Knowing what helps. Consensus work, using nominal group consensus techniques (Delbeg et al, 19), with 36 SLTs working with people with PPA identified the top three components of CPT to be 1. Using video feedback to focus on conversation facilitators and barriers, 2. Individualised, person centred intervention, and 3. Focusing on the interaction, rather than the impairment. Based on these results, BCPPA development focused on how to use video feedback to support a person with PPA and their CP to identify conversation facilitators and barriers. Following the focus groups and consensus work coproduction was undertaken alongside people with PPA and their families in the BCPPA steering group. BCPPA materials such as handouts, home based tasks and video examples of the intervention being delivered were developed for an online BCPPA resource. Phase II pilot and feasibility testing of BCPPA is currently underway across 11 UK National Health Service sites (Volkmer et al, 2018b).

Acknowledgements

This abstract is part of the symposium 'Aphasia in neurodegenerative conditions.'

References

Braun, V., & Clarke, V. (2006). Using thematic analysis in psychology. Qualitative research in psychology, 3(2), 77-101. Craig, P., Dieppe, P., Macintyre, S., Michie, S., Nazareth, I., & Petticrew, M. (2008). Developing and evaluating complex interventions: the new Medical Research Council guidance. BMJ, 337, a1655. https://doi.org/10.1136/bmj.a1655 Ven, A. H. V. D., & Delbecq, A. L. (1974). The effectiveness of nominal, Delphi, and interacting group decision making processes. Academy of management Journal, 17(4), 605-621. https://doi.org/10.5465/255307 Volkmer, A., Spector, A., Warren, J. D., & Beeke, S. (2018 a). Speech and language therapy for primary progressive aphasia: referral patterns and barriers to service provision across the UK. Dementia, https://doi.org/10.1177/1471301218797240 Volkmer, A., Spector, A., Warren, J. D., & Beeke, S. (2018 b). The ‘Better Conversations with Primary Progressive Aphasia (BCPPA)’program for people with PPA (Primary Progressive Aphasia): protocol for a randomised controlled pilot study. Pilot and Feasibility Studies, 4(1), 158. https://doi.org/10.1186/s40814-018-0349-6

Keywords: Primary progressive aphasia (ppa), communication partner training (CPT), Speech and language therapy, Dementia, Coproduction

Conference: Academy of Aphasia 57th Annual Meeting, Macau, Macao, SAR China, 27 Oct - 29 Oct, 2019.

Presentation Type: Symposium

Topic: Eligible for student award

Citation: Volkmer A, Warren JD, Spector A and Beeke S (2019). Better Conversations with Primary Progressive Aphasia: Coproduction of a conversation partner training programme with people with PPA, their families and speech and language therapists. Front. Hum. Neurosci. Conference Abstract: Academy of Aphasia 57th Annual Meeting. doi: 10.3389/conf.fnhum.2019.01.00106

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Received: 01 May 2019; Published Online: 09 Oct 2019.

* Correspondence: Ms. Anna Volkmer, University College London, London, United Kingdom, a.volkmer.15@ucl.ac.uk