Let’s talk about dementia…more.

It is around this time of year that I revisit my lecture slides for the speech and language therapy students I teach. I am now in the fourth year of teaching on the MSc at UCL- I teach two 3-hour lectures focusing on assessment of dementia and then management of dementia (language not swallowing- swallowing is discussed elsewhere on the course). So, 6 hours. It doesn’t seem adequate given that the number of people living with dementia is increasing exponentially. In 2015 it was estimated there were 850,000 people living with dementia in the UK and it is anticipated that these numbers will rise to over a million in 2025, and over 2 million in 2050. We are seeing massive increases in the number of people with Dementia on SLT caseloads too – more increased referrals than any other neurological condition.  In comparison there are around 250,000 people living with stroke related aphasia in the UK. Given the certain progression and cognitive decline imminent in dementia it might be suggested we need more teaching on dementia than on some other conditions. But given that neurologists and medics don’t really refer so many people with dementia to us for communication interventions this may be a more gradual process, as our role with people with dementia evolves.


This increase in numbers is because we have more people in our population who are living longer. The actual percentage of people living with dementia within each decade is going down – in other words we seem to be living longer and now also getting generally healthier (even in our brains). Additionally, life changing diseases such as cancer are much better managed and more people are able to survive a cancer diagnosis. Consequently, dementia has become the most feared condition amongst people in their middle age, more than cancer. There is no cure for dementia, no treatment that can slow or prevent the inevitable cognitive decline.


Almost everyone has been affected by dementia in some way, be it a friend or acquaintance, a distant relative, a close relative or themselves. This is a change from the recent past; older people may tell you that none of their grandparents had dementia- it wasn’t really around when they were young, or at least it wasn’t spoken of or understood. As the number of people living with dementia increases, our understanding of the disease improves and we hear more about it. Dementia features in the paper more and more often. People want to know what they can do to prevent the onset of dementia, how can they keep their brains as healthy as possible, what hope is there for treatment, and what about the care for those vulnerable people living with dementia.


I have decided to start my lectures with some examples of the current tabloid headlines from 2018:


Dementia cure ‘Within a Decade’ (Daily Express)


Eye test to Beat Dementia (Daily Mirror)


Toxic air ‘to blame for 60,000 cases of Dementia (Daily Mail)


Eat curry to beat dementia (Daily Express)


Dementia risk from Diabetes (Daily Express)


Our patients and their families are searching for information and answers about dementia. As health professionals, we may be asked for information about dementia. We need to know what we can offer, what therapy interventions work and what the evidence says. We also need to let other professionals (the people who refer to us) know what we can offer. We need to spread the word, we also need a better care pathway. But one step at a time- i also lecture to a group of students doing a masters on dementia at UCL (often medics or psychologists) and another lecture at the Institute of Psychiatry to a group of students doing a masters on neuropsychiatry (often medics and psychologists).


At the start of my lectures with the student SLTs I always give the, the option of leaving if they need to, this is an emotional and challenging subject at times. But I also feel that we all need to know about dementia. I often find people feel less anxious when they understand it more, when they learn about the strategies available, when they talk about it.


Better Conversations Conference- let us wet your appetite (and perhaps provide enough advance notice so your manager can approve your attendance in time!)

One of the best ways to learn is to bring together as many experts as possible in a room and ask them to share their experiences, knowledge and work with an audience. And so a conference is born. Yet all too often a piece of research that you hear about at a conference may have little relevance to the reality of your clinical practice. As clinicians we need to provide evidence based care- yet I question how can we achieve this when there seems to be this rather large gap between the optimal research setting and the complex clinical setting. And how can we apply an intervention if we aren’t give the actual tools and resources to do so? We end up cobbling together some make shift version of what we think the therapy is that we read or heard about and deliver a modified (often shorter) version.


The aim of the Better Conversations Conference is to break down these barriers. We are inviting clinicians to tell clinicians about how they are delivering these interventions, planning these interventions, measuring these interventions and developing these interventions to meet the needs of their clients in clinical practice. This could be a particularly interesting case you worked with, a novel group you ran, a complex issue you want to discuss, a new idea you want to suggest.


The Better Conversations Conference will bring together work on communication partner training on stroke led aphasia, primary progressive aphasia, dysarthria, brain injury, children and any other client group where this approach is used. Many of the principles of communication partner training share areas of practice such as:

– making a video of a conversation,

– viewing the video,

– identifying barriers (things that stop the flow of conversation) and facilitators (things that enhance the flow of conversation) in conversations,

– and supporting clients and/or their communication partners to do less of the first and more of the second.


We propose that part of the conference include workshops where we show videos of these things in action in speech and language therapy sessions. We aim to provide a forum to learn the basics of how to deliver communication partner training but also to refine and grow existing skills for example how to identify barriers and facilitators, how to explain conversation, how to set goals and what activities to plan.


That said we would also like to share some of the new developments in Better Conversations and communication partner training. We are therefore planning to invite some keynote speakers who will present some of the work going on in this area.


We are spreading the word about this conference now- it is likely to take place at the end on 2019, but we would like speech and language therapy clinicians to know well in advance. We know you need to tell your managers and plan your training for the year. Equally we would like the first ever Better Conversations Conference to meet your needs. With this in mind we want to hear from you:


Do you use Better Conversations?

Would you like to come to a Better Conversation Conference?

Would you be interested in presenting?

Who would you like to hear about and from whom?

Tell us what you think via email betterconversationsaphasia.pals@ucl.ac.uk or twitter @BCAphasia or @BCPPAphasia!


The new Better Conversations website will be online early next year and we will start to advertise the conference as we know more! So keep an eye on the website here!



The student voice: “Everyone has the right to communicate”

We are fast approaching the 70th anniversary of the Universal Declaration of Human Rights. Thus it seems timely that one of the speech and language therapy students working on BCPPA has been considering the right to communicate for people in our study. It is good to  hear from students as they describe these clinical encounters and really reminds us of the importance of communication.

So here is the blog from our next star contributor Alice Stanes describing some of her experiences @astanes


The man stands up to greet us as his partner welcomes us in, we sit at the table. Throughout the course of the conversation his speech appears halting and difficult, at times he closes his eyes to speak and touches his head as he searches for the words. He uses hand gestures and points at things inside and outside the house to aid our understanding. He is animated and excited about something, he starts to hum a tune softly and speaks using single words and short, conversational phrases; ‘you know? ‘you see?’.


This would be my very first encounter with someone with Primary Progressive Aphasia (PPA). Along with fellow student Oli, we made the journey to visit this man with PPA and his partner to conduct a series of post-intervention outcome measures as part of the BCPPA project. Each visit involves a language assessment for the individual with PPA and a series of quality of life measures in the form of questionnaires; different questionnaires are used for the individual with PPA and their respective partners or carers. These measures, albeit incredibly useful for collecting data about their lives and experiences, and in documenting the challenges faced by those living with PPA, are long and can be emotionally challenging in nature. Some of the questions aim to measure the burden that carers experience whilst living with and caring for someone with PPA. This can be a really tricky thing to talk about.


In conversation with the partners I have met so far it strikes me that they are incredibly resilient; they accept change, sometimes loss, but with no apparent regret for their new role as carers. For them, life as they know it has also changed but the relationship with their loved one remains intact, as does the identity of their partner. It has really reminded me that as in all cases of dementia, it is so important to remember the person behind the disease.


This first visit is testament to this. This man’s story wasn’t clear at first, but a second time around with repeated gesture and the help of his partner who showed us a video she has taken on his phone, suddenly it makes more sense. The tune that he is humming is the tune he played on the piano, in a small church that he and his partner came across on a recent walk in the surrounding countryside. Of course! Because he is not foremost a man with PPA, but a musician, and an incredibly talented and successful one at that. Whilst PPA has stripped him of his abilities to construct full sentences, recognise words or communicate using language in the way he once could, in his case, where words fail, music speaks. This experience was important enough for him to share, whilst his partner helped to create a supportive and facilitative space within which he could communicate and tell his story.


When people ask what brought me to speech and language therapy, my somewhat non-linear career trajectory can make it difficult to explain (at least succinctly!). However, as I progress through my training I realise that simply put my passion is for communication and for supporting those who have lost their ability to have a voice, in whatever form that takes, and in supporting those around them to become experts in listening.


Since starting the BCPPA project my passion for the field has only strengthened and I find myself feeling increasingly at home. Despite crippling self-doubt, a LOT of the time, these real-life clinical encounters amidst a sea of academic challenges remind me exactly why speech and language therapy is so important, because everyone has a right to communicate and to be understood.


The student voice: Joining up the dots

You may have read the recent article on the protocol for the BCPPA pilot study (my last blog post) and will know that we currently have a number of student speech and language therpaists (SLTs) involved in the project. In total I am supervising four SLT student projects in the 2nd year of their Masters course. Each of these students will be writing a blog post about their experiences for my blog and taking over the @BCPPAphasia twitter handle for a short period. We want to share the voices of the next generation of SLTs and encourage the use of social media as a platform for accessing CPD and professional networking.

Our first star student contributor is Jessica Cunningham @jmayc23

Okay, so here goes.

Blogging, social media, putting myself “out there” – whatever you want to call it- is not something that comes naturally to me. And in all honesty, when our supervisor Anna, asked us to each write a small guest blog for her, my heart well and truly sank. However, in a recent project meeting, Anna also said “it’s like a conversation, think of it like explaining your ideas to your mum”. Now that is something that does come naturally to me and, since starting the MSc in speech and language sciences at UCL over a year ago, has been an almost daily occurrence. Whether I’m excited about a new placement, crying out of sheer exhaustion or calling on my first day to say “what am I doing and how did I get here, I feel like a complete fraud!”, Mum has heard it all. To sum it up, they weren’t lying when they said this course would test you and at times it’s often easy to forget why you’re doing it all. Yet having the support of my Mum to patiently listen as I think aloud my worries and ideas has, by and large, kept me on track and focused on the end goal. However, since joining Anna and Suzanne on the BCPPA project, I’m not only helped to remember why I’m here and where I want to go, but also how I actually got here in the first place.

Before I applied for the MSc, before I had even heard of speech and language therapy (embarrassingly not that long ago), I started working as a carer for a man with primary progressive aphasia (PPA) called Peter. He had almost no verbal communication at all and over the first few months of working with him I had seen the many ways that often perfectly well-meaning people had really struggled to cope with his obvious communication difficulties. Instead of talking to him they talked over him to the nearest relative or carer. When I was invited by Peter and his wife to attend a course for people with PPA run by speech and language therapists (SLTs)at a local charity called Dyscover, I was immediately struck by how differently the SLTs there were able to both effectively and respectfully communicate with Peter. To say I was simply impressed would be a massive understatement, and even today, I am still trying to emulate the same compassion and skill that I saw in my first encounter with SLTs.

The therapists at Dyscover were offering a very similar type of conversation therapy to the BCPPA program, but in a group setting. Having had such a positive initial experience of this form of therapy and seeing first-hand the difference it can make to peoples’ most important relationships; I was thrilled to hear that BCPPA was one of the projects we could choose to work on as part of our MSc dissertation. In some ways, starting this project (and this course) feels almost serendipitous, after arriving at speech and language therapy in a rather roundabout way and coming from multiple and seemingly unrelated backgrounds. Yet, I also think, that in being able to keep talking openly about my ideas and reflecting on my interests, albeit often only to my Mum, has helped me to get to where I am today. Even in times of acute self-doubt (and there have been many!), I have found that these daily outpourings have given me the impetus to keep exploring what interests me most and “join up the dots” as my Mum calls it.

The Better Conversations with PPA randomised controlled pilot study protocol article: A blog summary

We have developed a communication partner training program for people with Primary Progressive Aphasia (PPA) and their conversation partners called Better Conversations with PPA (BCPPA).


This article describes a randomised controlled pilot study (that is currently underway) comparing BCPPA to no treatment.


This is the first randomised controlled UK pilot study of a communication partner training intervention for people with PPA and their families.


The BCPPA program and training materials will ultimately be made available to speech and language therapists (SLTs) via UCL’s public e-learning platform, alongside Better Conversations with Aphasia (BCA) at https://extend.ucl.ac.uk/.


Conversation training interventions (also known as communication partner training) have been widely used by SLTs working with people with PPA across the UK. At present there is little evidence to support their effectiveness, highlighting a gap in the research literature. BCPPA has been developed to meet the needs of people with PPA and their families using data collected from a UK wide survey of SLTs working with people with PPA, a systematic review of the research literature on functional communication focused interventions for people with PPA, advice from expert SLTs who participated in a Nominal Group Consensus exercise to prioritise the content of the program and from focus groups held with people with PPA and their families. This article describes the protocol for a randomised controlled pilot study that is currently underway comparing BCPPA to no treatment. The study aims to recruit 42 couples to participate in the study over 18 months, across 7 NHS sites in England. Participants who meet the inclusion criteria will be recruited by local speech and language therapist from their current caseloads. These SLTs have been trained to complete the pre-intervention measures and deliver the BCPPA intervention. If the potential participants consent they will participate in a series of outcome measures including making video recordings of themselves having conversations and a series of questionnaires on quality of life and the impact of the communication difficulties (both the person with PPA and their partners participate in these), additionally the person with PPA completes a language assessment with their SLT. Once this has been completed the participants are randomly allocated to receive either the 4-week BCPPA treatment (4 one-hour therapy sessions, delivered once per week), or no treatment for the same period. After this junior researchers (blinded to what condition the participants have been randomised to) will be seeing the participants to complete the same battery of measures. This should take a total of seven weeks. The local SLTs delivering the intervention have been asked to video and audio record themselves delivering all the intervention, so that the fidelity of intervention delivery can be evaluated. The local SLTs will also complete an adherence questionnaire, and the participants will be asked to complete an anonymous feedback questionnaire after every BCPPA therapy session. All the data will be collected and analysed to provide information about the most appropriate outcome measures, acceptability of randomisation, recruitment and retention of participants, fidelity of treatment delivery, sample size requirements and inclusion criteria for a future full trial.


Watch this space for our publications on the results of the study! We will be publishing them in peer reviewed journals, but will be sharing them with groups such as the PPA support group (branch of the Rare Dementias Support Group based at UCL; http://www.raredementiasupport.org/) as soon as we can!



And here is the link to the full article:


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), 158.






A social media approach to research dissemination: the stumble.

I recently received the loveliest email from a speech and language therapist who was asking for advice on applying for PhD funding. One of the things she mentioned was how much she liked my approach to dissemination – the use of twitter, blogging and podcasting. I am so pleased that I appear to be presenting a logical, well planned approach! But in the spirit of a recent podcast I participated in on the topic of imposter syndrome I am going to admit that it really isn’t. I opened a twitter account for all things “work related” just before I started my PhD. I wasn’t convinced. My oldest friends who all work in media and the arts thought it was highly entertaining that I was embarking on this lifestyle choice. They consider me something of a tech-heathen. I am one of those annoying friends who doesn’t reply to texts, emails or Facebook messages for days, by which time the event has passed or the conversation irrelevant. I tend to lurk on Facebook and never post anything, scrolling through other people’s posts as a distraction from some tense TV program. So, I didn’t anticipate taking a liking to twitter. But I have to say I have found it rather more interesting than Facebook. I realised I could have conversations on speech and language therapy (one of my favourite topics) with like-minded souls from across the planet, I found interesting articles and it all fired my enthusiasm. I now find twitter provides me with community, a community that encourages me and excites me and drives me to share my work. I have to advocate twitter to the non-believers now. Just come and take a look, lurk and look and then make a decision.


I then went to a rather useful talk on social media at an NIHR meeting just two months after I started my PhD. The speaker was advocating the benefits of blogging. So, I thought that perhaps blogging might give my poor husband a rest. Rather than assaulting him with my ideas and reflections on research, dementia and being a speech and language therapist I thought that blogging might be a useful method of sharing (venting) my experiences of being a clinical academic, and might even reach others, paying forward some of the hints and tips. Disseminating information on the study I am doing was of course the top agenda for taking up this route. It felt much more accessible to write regular blogs (freely available on the internet) rather than relying solely on publishing journal articles (in journals that sadly some NHS trusts may not subscribe to) that may be less accessible for clinical speech and language therapists. Blogging has opened up other avenues too. I have been invited to blog on the RCSLT website, on the Talking Mats website and on the NIHR website. I was even shortlisted in the NIHR 2017 Let’s get digital! Competition, and although I didn’t win the traffic to my site increased massively. I also like to advocate blogging- it is so nice to be able to write something down, in a conversational style and realising you are reaching people who may otherwise not be able to access this information. You don’t need to blog lots, but regularly. And there are so many free platforms about now too.


On my twitter travels I recently happened upon the @dem_researcher twitter handle and website led by the NIHR. I think they were asking for blogs and I asked if I could submit a blog. Somehow, I managed to convince them that I could send in regular blogs (monthly) and now I write for them too. I also spotted tweets inviting people to do podcasts for @dem_researcher. And so, I stumbled into participating in two podcasts. One on the topic of imposter syndrome (released this week), the other on the topic of my own project!!! (released a couple of weeks ago). I really enjoyed the podcasting. Since the release of the podcast on my research study I have received emails from a person with PPA and their partner in the US, and a speech and language therapist in New York, asking about the intervention I have developed. What an amazing platform.


If I were asked about my social media approach I would have to explain (as I have above) that it has been more about seeing an opportunity (incidentally) and having a go. There have been other things that haven’t worked out (twitter conversations that have petered out) but lots that have worked out, or may be building something even more exciting for the future (I am involved in setting up a clinical academic group for speech and language therapists- who know where that may lead).


So what’s next? I haven’t yet used Instagram.…(but I am open to trying at some point).


Podcasting success: My husband understands my research!


I would probably classify myself as a have a go at anything kind of person. This can have some rather awful but also rather fantastic results. So when I was lazily scrolling through twitter not that long ago and I saw that @dem_researcher were inviting people to do a podcast with them about their own research projects I signed myself up (quickly, before I could change my mind). I then had a great chat with Adam who runs the podcasts to find out how it works and realised I would need to recruit some people from the project team to do the recording with me. I started considering who would be best and most willing to ‘sacrifice’ themselves alongside me.


There are four student speech and language therapists working on the project at the moment; and Tiffany Cheng. These bright young things are all really tech (and social media) savvy and brilliant key members of the team. (The students are currently planning a twitter take over to rejuvenate the twitter handle and share their experiences of clinical academic student life) So some podcasting seemed right up their street and thus Ollie volunteered to participate.

In addition the day of the recording happened to fall on the day of our BCPPA steering group meeting (who meet three-four times annually to provide advice on the project and its progress). The BCPPA steering group comprises three couples where one person has PPA, and three professionals including , an extremely experienced brilliant SLT who is experienced in spreading the good word about our profession through her work with Dyscover- Rosemary has experience of being interviewed on the radio. And thus our team was set.


Now, we did have an idea of the questions and were able to make some plans in advance, but as I am of the verbose breed, it was great to have a wonderful host to keep us on track and to time (NB: it is generally understood that there are two types of SLTs a)verbose and over friendly b)shy and quiet but excellent at listening). We were able to briefly discuss who would say what, but equally podcasting is supposed to be somewhat informal too (the pressure was mounting). Recording the podcast was a little nerve racking initially, we were in a fancy room, with fancy equipment and it was a swelteringly hot day! But once we started it seem to flow. In fact by the end we were quite enjoying it.

Now listening back to the podcast 2 months after we recorded it I was expecting the worst. Did we even make sense? I do hate the sound of my voice. I can be rather overbearing and dominating at times (sorry for talking over you Ollie!). I listened to the podcast with my husband who was quick to tell me that I sounded different to “real life” (much posher apparently!?). Having gotten over the initial barrier of hearing my loud and piercing voice (yes someone once told me that is how I sounded to them) I realised that I did actually make some sense. And the best bit- at the end of the podcast my husband announced that he had learnt more about my research is this 30 minute recording than in any other discussion we had ever had.


Since Monday when it went ‘live’ I have had a few tweets and a number of emails about the project from people who had listened to my podcast. Often from people who I have not heard from before, from as far afield as Australia and the US. What a wonderful and different way of spreading the word about the work we are doing to support with PPA and their families to have better conversations. You can listen to our podcast via the link below. And get in touch- let me know what you think, I would love to hear from people.