Title: Better Conversations with Primary Progressive Aphasia (BCPPA): Communication training to keep families together.
Funder: Department of Health and Social Care

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.

Lay abstract: There are certain types of dementia where people have difficulties with communication, for example difficulties thinking of words, understanding words or using the right sounds, but their memory and thinking skills remain good. This is called primary progressive aphasia (PPA). People with PPA often describe a number of years during which communication becomes slowly worse, yet they try to cope at work and socialise with family and friends without telling anyone about their difficulties. This can cause a lot of distress and frustration for these people and their families, but they often have a lot of difficulties getting the help that they need. There are speech and language therapy exercises that have been shown to help people with PPA use their words for longer. These include repeating words, matching words to pictures and descriptions, and practising sounds that make up a word, and have to be done every day. People with PPA often find these exercises frustrating. So a lot of speech and language therapists (SLTs) work on communication training instead. This involves SLTs, people with PPA and family members discussing how to make day-to-day conversation at home easier. Giving advice to a family member is important because the person with PPA will get worse over time. I recently did a small survey of 23 SLTs who work in London and the South of England. I found that they use programs like this that are for people who have stroke-related communication difficulties ('aphasia'). These programs have not yet been proven to work for people with PPA. But they can be successful for stroke survivors. This lack of clinical evidence inspired me to apply for funding to start some research. I was awarded money from the Guys and St Thomas' Charity, and in April 2014 I started to develop a new communication training program for people with PPA and their families. It is called Better Conversations with PPA (BCPPA), and it is based on one of the programs for stroke-related aphasia, called Better Conversations with Aphasia. I chose to base it on this program because it comes with growing evidence that it works well for people with stroke, and some of the SLTs in my survey reported using it. Also it is free on the internet, so it is easy to access. However, it does not include information on dementia and the brain, nor on how communication will get worse. This means I need to adapt the program. With the Guys and St Thomas' Charity funding, I am starting to gather evidence about whether people find it useful, and whether it works. But I need to do a bigger study to be sure. I will do this in three stages: 1. A large survey of SLTs in the UK I will ask them in detail about what therapy they offer to people with PPA. I also want to examine all the published information on speech and language therapy for people with PPA. This will help me work out what the current therapies have in common, and what works and what doesn't. 2. Adapting BCPPA into a therapy program on the internet, plus a manual, to help SLTs to use it. To do this I will ask SLTs and people with PPA and their families from South London and the Maudsley NHS Trust where I currently work to help me test it and agree on what it should include. 3. Testing the program with a small group of people with PPA, and comparing the results to ordinary SLT treatment (given to another small group of people with PPA). This will help me prepare for a bigger trial by allowing me to test out ways of measuring improvements. I will be able to work out how much help I need to give the SLTs to make sure they are all doing the program the same way. It will also allow me to measure how many people are needed for a bigger trial i.e. how many people I need to make sure the measurements are strong enough to show a real improvement, not just a coincidence. If BCPPA is a success after this study, I will go on to run a larger trial of the BCPPA program with more people and more SLTs. If there is good evidence that BCPPA helps communication, I will spread the word to SLTs across the UK and the world, and they will be able to train themselves using the internet and use it with their patients.

Research activity codes: 6.6 PSYCHOLOGICAL AND BEHAVIOURAL;6.8 COMPLEMENTARY
Health categories: NEUROLOGICAL