'Better Conversations with Primary Progressive Aphasia and other rare dementias (BCPPA plus)' telehealth...

Language and communication difficulties are common across a range of dementias including primary progressive aphasia (PPA). Better Conversations with PPA (BCPPA) is a co-designed communication partner training intervention that aims to improve the experience of conversations for a person with communication difficulties. An NHS-based pilot study of face-to-face BCPPA demonstrated positive outcomes but also raised questions about when and where this intervention should be delivered (at diagnosis or later; face to face and/or remotely), how to best measure the effectiveness of the intervention in line with participant's priorities and whether BCPPA might be acceptable and useful to people with a range of dementia types. We also had questions about the possible economic implications of BCPPA. In preparation for a future full effectiveness study, the present study will address the following questions: IMPLEMENTATION: What is the optimal schedule and dosage of BCPPA versus treatment as usual?

What are the eligibility criteria for the BCPPA intervention? Is remote delivery of BCPPA acceptable to people with PPA and other dementias? Can the BCPPA be delivered remotely as intended? Do planned outcome measures show sensitivity to change pre-/post-/3 months post BCPPA? What are the barriers and facilitators to implementation of BCPPA in an NHS setting? What is the most appropriate perspective of analysis and way of measuring costs and outcomes in a future cost-effectiveness analysis of BCPPA versus usual care?

In line with Medical Research Council guidance on development and management of complex interventions, Skivington et al, 2021 this protocol paper describes a phase II mixed-methods process evaluation and health economic study. This protocol for a randomised controlled pilot feasibility study compares the BCPPA communication partner training intervention with a deferred entry group for people with PPA and other rare dementias and their communication partners. Participants will be recruited at diagnosis and review appointments from two NHS trusts. Participants who have completed a repeated baseline measure will be randomised to either the BCPPA intervention or a deferred entry group. The intervention will be delivered remotely, via teletherapy, over 4-6 weeks depending on goal achievement. The deferred entry group will receive the intervention after a 6-week waiting period, and all participants will be assessed immediately post intervention and again at 3 months post intervention. Outcome measures have been selected in line with the current recommendations for a core outcome set for PPA and to address questions of implementation and health economic evaluation. Qualitative and quantitative analysis methods will be used to explore the data.

Ethical approval for this study was granted by the Health Research Authority for England and Wales IRAS (Project ID: 341322 REC REF 24-NI-0123). Results from this study will be published in peer-reviewed journal articles and shared with participants and patient and public involvement advisors in accessible formats.

ISRCTN16268666.