Better Conversations with Primary Progressive Aphasia: Communication training to keep families together.
Study Code / Acronym
BCPPAAward Number
DRF-2015-08-182Award Type
Doctoral Research FellowshipProgramme
NIHR FellowshipsStatus / Stage
CompletedDates
2 October 2015 -1 October 2019
Duration (calculated)
03 years 11 monthsFunder(s)
NIHRFunding Amount
£307,331.76Funder/Grant study page
NIHRContracted Centre
University College LondonContracted Centre Webpage
Principal Investigator
Dr Anna VolkmerPI Contact
a.volkmer.15@ucl.ac.ukPI ORCID
0000-0002-4149-409XWHO Catergories
Models across the continuum of careTools and methodologies for interventions
Disease Type
Early-onset DementiaCPEC Review Info
| Reference ID | 172 |
|---|---|
| Researcher | Reside Team |
| Published | 12/06/2023 |
Data
| Study Code / Acronym | BCPPA |
|---|---|
| Award Number | DRF-2015-08-182 |
| Status / Stage | Completed |
| Start Date | 20151002 |
| End Date | 20191001 |
| Duration (calculated) | 03 years 11 months |
| Funder/Grant study page | NIHR |
| Contracted Centre | University College London |
| Contracted Centre Webpage | |
| Funding Amount | £307,331.76 |
Abstract
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 speech and language therapists (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 research will allow me to build directly on my current work, funded by Guys and St Thomas’ Charity at the neuropsychiatry memory clinic in South London and the Maudsley NHS Trust. This has begun to develop a communication training program called Better Conversations with Primary Progressive Aphasia (BCPPA), an adaptation of Better Conversations with Aphasia (BCA, Beeke, Sirman et al 2013), a manualised online program for SLTs treating people with stroke-related aphasia. The plan of investigation for this next phase of the research comprises three stages over four years: 1. A survey of current speech and language therapy practices and review of the literature; 2. Adaptation of a communication training program (BCPPA); and 3. A multi-centre pilot study with a control group. Study Aim:To adapt the BCPPA program from an effective program for stroke-related aphasia to meet the needs of patients with PPA, family members, and SLTs, and reflect the effective intervention components of the current evidence base. The objectives are to: Stage 1 establish what interventions SLTs use in clinical practice with people with PPA complete a review of the literature on speech and language therapy interventions for PPA Stage 2 (Phase I intervention development) adapt, with significant patient public involvement, a communication training program on which I have done preliminary development work (the BCPPA program) create an online intervention manual and supporting educational materials to train SLTs to deliver the program Stage 3 (Phase II pilot) pilot the BCPPA program with a control group over three sites to evaluate: – whether a trial can be delivered as intended – whether the BCPPA program and standard practice can be delivered as intended – a primary outcome measure for a main trial – predicted patient recruitment and retention rates – the numbers of SLTs that can be recruited – if a cluster randomised design is appropriate – preliminary data on efficacy The resulting BCPPA program will support SLTs to carry out individualised evidence based treatment and thus ultimately to develop a stronger business case for service development in PPA. I envisage this study to be the first step to a further large-scale trial of the BCPPA program, if this appears appropriate. My aim is to translate the outcomes of the project into standard care for people with PPA within 7 years. I strongly believe that BCPPA could lead to improved independence and quality of life for patients as well as improved wellbeing for carers, and thus empower families to stay together, as their family member with PPA is supported to remain living at home for longer.
Aims
To adapt the BCPPA program from an effective program for stroke-related aphasia to meet the needs of patients with PPA, family members, and SLTs, and reflect the effective intervention components of the current evidence base.