Better Conversations with Primary Progressive Aphasia Research
What is the problem?
Primary Progressive Aphasia (PPA) describes a group of language led dementias, who have in common a progressive deterioration in speech, language and communication as the leading symptom of the disease. Unsurprisingly, people with PPA experience many difficulties participating in conversations. This often impacts relationships, resulting in increased social isolation and loneliness. Partners and family members of people with PPA report that they often don't know how best to support their relatives with PPA in conversations, and spend time searching for guidance. Work being undertaken in the Better Conversations with PPA (BCPPA) programme of research aims to:
- understand the communication difficulties experienced by people with PPA and their communication partners
- coproduce communication partner training (BCPPA) to meet the needs of people with PPA and their families
- explore a range of options for accessing BCPPA, both face to face and remote via telehealth
- evaluate the acceptability and feasibility of delivering BCPPA in an NHS setting
- understand the health economic and implementation implications of the BCPPA intervention
- how best to measure the outcomes of BCPPA
What do we know already?
We know that people with PPA and their family members experience reduced quality of life as a result of their communication difficulties. People with PPA and their family members worked with us to coproduce BCPPA in line with the Medical Research Council guidance on developing complex interventions. Initial pilot-feasibility work has shown that the face-to-face BCPPA programme is an acceptable intervention for people with PPA and that it is deliverable in an NHS setting (Volkmer et al, 2023). We recruited 18 people to the study, but identified many more who were unable to benefit from the intervention as their communication partners were unable to access it, or they were referred to speech and language therapy too late into their disease journey. Of the 18 participants, 9 were randomised to receive BCPPA. These participants demonstrated changes in their behaviours in line with the goals they set in therapy.
Current Project
NIHR funded work is currently underway to adapt BCPPA to be delivered remotely, via video conferencing (https://www.fundingawards.nihr.ac.uk/award/NIHR302240). We anticipated that a remote version of BCPPA would enable more people with PPA and their communication partners to be able to access the intervention. We are also working with people with PPA to understand how best to measure the outcomes from BCPPA and what the dosage and schedule of the intervention might look like on a care pathway. We are planning an implementation, health economics, feasibility study of a remotely delivered BCPPA for people with PPA or other rare dementias. We believe that people with other rare dementias would also benefit from this intervention.
Social Media Outputs
Better Conversations podcast 2023 for Giving Voice
Blogs for NIHR Dementia Researcher
Key Publications
Volkmer, A., Spector, A., Warren, J. D., & Beeke, S. (2018). 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), 1-10. https://doi.org/10.1186/s40814-018-0349-6
Volkmer, A., Spector, A., Swinburn, K., Warren, J. D., & Beeke, S. (2021). Using the Medical Research Council framework and public involvement in the development of a communication partner training intervention for people with primary progressive aphasia (PPA): Better Conversations with PPA. BMC geriatrics, 21, 1-17. https://doi.org/10.1186/s12877-021-02561-8
Volkmer, A., Farrington-Douglas, C., Crutch, S., Beeke, S., Warren, J., & Yong, K. (2022). Better conversations: a language and communication intervention for aphasia in posterior cortical atrophy. Neurocase, 28(4), 356-363. https://doi.org/10.1080/13554794.2022.2125326
Volkmer, A., Walton, H., Swinburn, K., Spector, A., Warren, J. D., & Beeke, S. (2023). Results from a randomised controlled pilot study of the Better Conversations with Primary Progressive Aphasia (BCPPA) communication partner training program for people with PPA and their communication partners. Pilot and Feasibility Studies, 9(1), 87. https://doi.org/10.1186/s40814-023-01301-6
Volkmer, A., Beeke, S., Warren, JD., Spector, A. & Walton, H. (2023) Development of fidelity of delivery and enactment measures for interventions in communication-disorders. Journal of Health Psychology. https://doi.org/10.111/bjhp.12690