Volkmer, Anna; (2020) Better Conversations with Primary Progressive Aphasia (BCPPA): Developing and piloting a communication partner training intervention for people with primary progressive aphasia and their significant others. Doctoral thesis (Ph.D), UCL (University College London).

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Abstract

Primary progressive aphasia (PPA) is a language led dementia, often associated with Fronto-Temporal dementia or Alzheimer’s disease, presenting as insidious deterioration of language, initially with relative sparing of cognition. The effectiveness of communication partner training (CPT) for PPA is unknown, yet speech and language therapists (SLTs) report regular clinical use. This thesis developed and piloted a CPT for people with PPA and their communication partners (CPs), ‘Better Conversations with Primary Progressive Aphasia’ (BCPPA) following phases I and II of MRC guidelines for developing complex interventions. Phase I included a UK survey of SLTs, a systematic review of PPA functional communication interventions, and development of the intervention manual, co- designed with a steering group and SLTs. Phase II comprised a single blind, randomised controlled pilot-feasibility study across 11 National Health Service sites in England and Wales. Surveyed SLTs prioritised CPT over impairment-focused interventions. The systematic review identified key components of PPA functional communication interventions to be building on existing strategies, and practising with a CP. This informed development of the BCPPA manual alongside consensus work with SLTs to agree key intervention components, and steering group co-production of materials. The pilot-feasibility RCT recruited 18 people with PPA and their respective CPs (dyads). Participants and SLTs found BCPPA acceptable. Intervention fidelity was 87.2%. Preliminary intervention findings indicate 8 of 9 5 Abstract dyads achieved positive change in self-identified conversation goals. However, BCPPA was no more effective than no treatment on self-rated measures of quality of life, confidence in communication, impact of communication disorder, carer burden, and carer stress. Although the AIQ-21 was identified as a potentially suitably sensitive outcome measure, observation data on communication behaviours has not yet been analysed. The current sample size calculation is large and poses a potential difficulty in recruitment to a future full trial with the same design as the current pilot feasibility study. Data collection continues, and further analysis of as yet unexamined communication behaviour is underway. This work will provide additional information to make a better decision about the feasibility of a future large scale evaluation of BCPPA.

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