Better Conversations with Primary Progressive Aphasia (BCPPA)

Project Team

Anna Volkmer, Dr Suzanne Beeke, Dr Aimee Spector

Funder

NIHR Doctoral Research Fellowship

Dates

Oct 2015 - Sept 2019

Summary Certain variants of early-onset dementia, called primary progressive aphasia (PPA), initially present only as a language difficulty. People with PPA present with a history of slowly worsening communication, and are often struggling to manage family life, work and social relationships. They are more isolated from services such as speech and language therapy than individuals with other dementia types, despite experiencing considerable frustration and distress around communication and often being of working age. Interventions have demonstrated maintenance of language skills through repetitive drilling of single words, yet many patients disengage from these programs due to frustration at practising words they will eventually lose as the disease progresses. Instead of focusing on lexical impairment, many frontline SLTs deliver communication training for patients and family members to support everyday conversation, and thus maximise quality of life. SLTs report using a variety of communication training approaches that have not been trialled with people with PPA, but which come from the stroke and brain injury literature. This PhD will allow me to build directly on recent work with Professor Michael Kopelman, funded by Guys and St Thomas’ Charity at the neuropsychiatry memory clinic in South London and the Maudsley NHS Foundation Trust. In this project I began to develop BCPPA as an adaptation of Better Conversations with Aphasia, the free online resource for SLTs treating people with stroke-related aphasia (Beeke et al., 2013). My PhD research comprises three stages over four years: 1. A survey of current speech and language therapy practices and review of the literature; 2. Refinement of a communication training program (BCPPA); 3. A multi-centre pilot study with a control group. You can follow my work on twitter @volkmer_anna or on my blog https://annavolkmersbigphdadventure.wordpress.com. a.volkmer.15@ucl.ac.uk
Key publications Volkmer, A. & Beeke, S. (2015). How to help couples have better conversations. Journal of Dementia Care 23(5), 22-24. Volkmer, A. (2015). Communication training keeps families together. Bulletin (756), 11. Volkmer, A. (2013). Assessment and Therapy for Language and Cognitive Communication Difficulties in Dementia and Other Progressive Diseases. J& R Press, UK.
References Beeke, S., Sirman, N., Beckley, F., Maxim, J., Edwards, S., Swinburn, K. and Best, W. (2013) Better Conversations with Aphasia: an e-learning resource. Available at: https://extend.ucl.ac.uk/

Summary

Certain variants of early-onset dementia, called primary progressive aphasia (PPA), initially present only as a language difficulty. People with PPA present with a history of slowly worsening communication, and are often struggling to manage family life, work and social relationships. They are more isolated from services such as speech and language therapy than individuals with other dementia types, despite experiencing considerable frustration and distress around communication and often being of working age.

Interventions have demonstrated maintenance of language skills through repetitive drilling of single words, yet many patients disengage from these programs due to frustration at practising words they will eventually lose as the disease progresses. Instead of focusing on lexical impairment, many frontline SLTs deliver communication training for patients and family members to support everyday conversation, and thus maximise quality of life. SLTs report using a variety of communication training approaches that have not been trialled with people with PPA, but which come from the stroke and brain injury literature.

This PhD will allow me to build directly on recent work with Professor Michael Kopelman, funded by Guys and St Thomas’ Charity at the neuropsychiatry memory clinic in South London and the Maudsley NHS Foundation Trust. In this project I began to develop BCPPA as an adaptation of Better Conversations with Aphasia, the free online resource for SLTs treating people with stroke-related aphasia (Beeke et al., 2013).

My PhD research comprises three stages over four years:

1. A survey of current speech and language therapy practices and review of the literature;

2. Refinement of a communication training program (BCPPA);

3. A multi-centre pilot study with a control group.

You can follow my work on twitter @volkmer_anna or on my blog https://annavolkmersbigphdadventure.wordpress.com.

a.volkmer.15@ucl.ac.uk

Key publications

Volkmer, A. & Beeke, S. (2015). How to help couples have better conversations. Journal of Dementia Care 23(5), 22-24.

Volkmer, A. (2015). Communication training keeps families together. Bulletin (756), 11.

Volkmer, A. (2013). Assessment and Therapy for Language and Cognitive Communication Difficulties in Dementia and Other Progressive Diseases. J& R Press, UK.

References
Beeke, S., Sirman, N., Beckley, F., Maxim, J., Edwards, S., Swinburn, K. and Best, W. (2013) Better Conversations with Aphasia: an e-learning resource. Available at: https://extend.ucl.ac.uk/