Title: Better Conversations with Primary Progressive Aphasia and other rare dementias (BCPPA): Speech and Language Therapy to keep families together.
Funder: Department of Health and Social Care

Abstract: Background: The number of people living with dementia is estimated at 850,000 in the UK and is set to triple by 2050. Of these, several thousand have primary progressive aphasia (PPA): a group of early onset language-led dementias. People with PPA experience a deterioration in communication that affects their employment, their social lives and relationships, often leading to depression and social isolation for them and their families. Many people with Alzheimer's disease (the most common form of dementia) also experience these devastating difficulties. Speech and language therapy is the ONLY available intervention that addresses these issues. Yet this is an under researched area. This means speech and language therapy services are often difficult to access or poorly commissioned. I started to address this in my NIHR-funded PhD research by coproducing an intervention to help people with PPA and their families, entitled Better Conversations with PPA (BCPPA). However, further work is urgently required to develop evidence-based interventions for PPA. Importantly, BCPPA is a 'test case' for developing models of intervention that will serve the much larger burden of language dysfunction in dementia more generally. Aim: This proposal outlines three work packages with one overarching aim to underpin plans for a future effectiveness and cost-effectiveness study. WP1. Core outcomes set for PPAI will conduct a systematic review of current outcome measures used in intervention research in PPA. I will hold focus groups to find out what outcomes are important to people with PPA and their families. This will inform work to agree a core outcome set amongst the international research community in this field. I will also look at the use of generic health related quality of life measures historically for people with PPA, and how appropriate they are for health economics analysis. WP2. Care pathway for PPAI will run focus groups to find out when people with PPA and their families think they should be offered speech and language therapy interventions. This will inform the coproduction of a care pathway. WP3: BCPPA as a test caseIn line with Medical Research Council guidance on developing complex interventions I will conduct a process evaluation embedded in a randomised feasibility study with people with PPA and AD. This will explore outstanding questions around implementation (intervention schedule), recruitment, delivery (is remote BCPPA acceptable to participants with PPA and AD) and evaluation of BCPPA both in terms of effectiveness and cost-effectiveness. NHS/Patient impact: 1. Development of care pathway recommendations for people with PPA, 2. A speech and language therapy intervention that improves the confidence and conversations of people with PPA and their families, can be delivered in online, within an NHS setting, and ultimately helps people with dementia, including AD, to live better, for longer.Career impact: Support my transition to research leader. Build research capacity by supervising a PhD student.Dissemination: Rare Dementia Support, speech and language therapy and research networks (via social media), national and international conferences and peer reviewed journal articles.Future research: NIHR funding for full evaluation of BCPPA.

Lay abstract: The problem: Certain types of young onset dementia, called primary progressive aphasia (PPA), cause a gradual deterioration of language skills. This devastating diagnosis affects the person's ability to work, socialise and talk to family members. This can result in depression and social isolation for the person with PPA. Family members who are trying to support them also report feeling isolated and lonely. People with Alzheimer's Disease (AD; the commonest form of dementia) can also experience these language difficulties. These problems are under recognised, and under researched. Currently there is no care pathway for people with these difficulties. Speech and language therapy is the ONLY intervention that can help manage language difficulties for people with PPA and their families. To date, the research that has been done in this area has involved very small numbers of participants. This means we cannot be confident that these interventions work for other people. This research has also focused on practicing words, which do not help the family around the person. People with PPA and their family members have asked us to develop training to help them feel more skilled in conversations, and this is what I did during my NIHR-funded PhD. The training is called Better Conversations with PPA (BCPPA). My research showed that speech and language therapists could deliver BCPPA in the NHS, and people with PPA and their families were positive about it. This work raised questions about how to measure the effectiveness of interventions for people with PPA, what a care pathway for people with PPA looks like, and whether BCPPA has the potential to provide a test-case for implementing future similar interventions for people with AD and other dementias in the NHS? Finally, given that in the UK two thirds of the cost of dementia is borne by family carers, what are the possible economic implications of BCPPA? This research aims to: 1. Work with people with PPA, their families and researchers to develop a set of core outcome measures.2. Coproduce a care pathway for people with PPA3. Answer key questions to support the future implementation of BCPPA in the NHS for people with PPA and AD including: when to offer it, how much to give, can it be delivered remotely (via video conferencing) and how do we evaluate how effective and cost-effective it is? How will this research be carried out? The study will use a number of different research methods. This work will be completed with the support of a Research Assistant. 1. I will examine the properties of all outcome measures used in intervention research for people with PPA. I will ask people with PPA and their families which outcomes are most important. Finally I will work with researchers internationally to agree a core outcome set. 2. I will interview groups of people with PPA and their families to ask them when is the best time to be offered speech and language therapy interventions. I will then coproduce a care pathway. 3. I will conduct a process evaluation, as recommended by the Medical Research Council guidelines on developing complex interventions, as part of an NHS based randomised feasibility study comparing BCPPA to routine care. Patient and Public Involvement: People with PPA and their families have helped develop this research. I will form a PPI reference group, so they can continue to help make decisions about this research. Dissemination: Research outcomes will be shared with people with PPA, their families and the wider public through Rare Dementia Support and various social media platforms. Results will also be disseminated at conferences and via peer reviewed journal articles.

Research activity codes: 7.1 INDIVIDUAL CARE NEEDS;8.4 RESEARCH DESIGN AND METHODOLOGIES (HEALTH SERVICES);6.7 PHYSICAL
Health categories: NEUROLOGICAL