Can we reduce the stigma around dementia: Ideas please.


The stigma around dementia remains massive. Dementia is one of the most feared condition by those in their 50s and 60s, perhaps partly because of what people associate with dementia. People assume that dementia results in a total loss of all cognitive capacity- it is not uncommon to hear a daughter, son or partner of a person who has just been diagnosed with dementia stating that the person will now no longer be able to manage any finances, shopping, household chores. They will not be able to have any responsibilities or make any further decisions about anything again. Occasionally I have also met people who have been excluded from their families and communities because of their diagnosis. Who have lost business’, their homes, their identity and the people they love. Generally, because the dementia has mistaken for something else. Just once I met someone who had been told she had been inhabited by “bad spirits” : the dementia.


I have recently had a number of conversations around the stigma associated with a dementia diagnosis. The difference is this time that I was talking about what we as health professionals could do to reduce this stigma.


One way of doing this is to co-produce work with people with dementia. To work together as a team. The steering group on my research project has been working with me throughout my project (3 and a half years nearly- to date). This steering group is made up of three couples- where one person has language led dementia (primary progressive aphasia- PPA), and their partners. The group provide advice and guidance on the development of my work. One aspect of this has included developing information (modules) that will alongside the intervention we are currently trialing. The group felt that we couldn’t put the intervention out, freely available, on the internet without providing some basic information on what PPA is, what conversation training is and what other resources and information there is on PPA.


We have most recently been working on the resources module. Included in this was going to be a list of communication tips and hints. Yet on discussion the group felt these tips were too narrow, too specific. They wanted to create a set of tips and hints to help people live well. To dispel some of the myth around what life is like following a diagnosis of PPA. We wrote a list of activities, and ideas on things to do (together) that are not dependent on language. Things that people in the group, their friends and family like to do. The list is long- from crafting to walking to attending concerts. And it is exciting. After we wrote the list (it took some time) the group felt electric. Everybody was excited by the list. We all felt that it was an incredibly positive thing to do. That we had created a really useful resource that will remind people of everything they CAN do.


I am now working with a colleague to create another small idea to reduce the stigma around dementia. We would like to create a video recording of an education session. The aim is to:

  • Help people understand why dementia affects language and communication
  • Show how people can have better conversations with people with dementia by using some simple communication strategies
  • Reduce the stigma around dementia by highlighting that people with dementia lead rich and fulfilling lives, can make their own decisions and lead a good life.


We want to record it so that we can share it for free via any possible medium- the internet, word of mouth and so forth.


But what we would really like to know is would people be interested in this and what would they like us to do in such an event?


Do share your ideas and comments! They are always useful.






Old and young: overlaps between developmental language and acquired language disorders


Despite being an adult SLT (ever since graduating) I recently went to a series of really interesting presentations on developmental language. This is not that unusual, I often listen to colleagues speaking about their work in this area. And being a PhD student is a wonderful opportunity to take advantage of the incredibly rich environment in which I am working. Even in the 4th year of my PhD I am attending these talks. Being a PhD student is an incredibly valuable experience, and writing up my thesis is not necessarily the most important part of it. Here are some interesting pearls from this recent series:


There are many links and parallels between language development in children and loss of language in adult acquired neurological conditions. One talk I attended focused on the importance of stress, tone and emphasis in infant directed speech. Over-emphasising on syllables and words can enable infants to start parsing and following sounds, words and turns. Using strategies such as eye contact, and the name of the child can act as signals to gain and maintain attention. It is not so different in dementia- using a persons name and making eye contact are incredibly useful for gaining their attention, and for many who have less cognitive resources and reduced auditory processing there is now evidence indicating they may benefit from that type of over-emphatic speech. Despite it being previously considered fairly patronising it may be an important strategy to aid comprehension for some individuals with dementia.


Learning conversational turn taking from parents or communication partners is another area that is thought to contribute to language development. Both in the act of, and content of turns, breakdowns and repairs in conversation. The communication partner plays an important and valuable role in conversation and turn taking. Similarly the skills of the communication partners are often vital for adults with aphasia and dementia. People with aphasia and dementia are often able to continue participating in many aspects of conversational undertaking, and a skilled communication partner can enable them to continue doing so. A skilled communication partner can modify their turns to scaffold the conversation for the person with aphasia or dementia.


I have always found how children learn to read a fascinating process. And the research indicates that learning to read by sounding out- so through the phonics system, is equally effective as learning to read by learning the orthographic word forms. On imaging however it appears that the phonics route is significantly less cognitively effortful. And given that a shocking number of the adult population are not able to read (around 15% apparently) this may be useful for teaching adults. Adult literacy is extremely difficult to untangle. It may often be complicated by dyslexia, social communication difficulties and socio-economic status. But we also know that adults with developmental dyslexia may be more at risk of dementia than their peers. Perhaps this type of work could join some of these dots and provide some suggestion as to why this might be the case.


As a bilingual person, bilingualism fascinates me. There is some suggestion that children spread their vocabulary acquisition across two languages, but eventually catch up. That reading and writing suffer as a consequence, and it could be difficult to translate skills from one language to another. But the idea that bilingualism can protect against the onset of dementia is wonderful. Yet Asia is experiencing significant increases in the number of people living with dementia and here bilingualism is far more complex- people switch through 2-3-4 languages within a conversation, perhaps based on ease of word retrieval or contextual cues. How does this factor in?


There is so much exciting research in my department, and listening to fields outside my own can be inspiring. We can draw links, think creatively and explore alternative theories. There is so much more work to be done! I feel so privileged to be exposed to this environment, to be working in such a fascinating field. I can’t wait to do more than my PhD- to continue in this clinical-academic field. I have so many ideas!

The student voice: Translating what I learn

Globally, the number of people living with dementia is increasing. These increases are not predominantly in the English speaking world- older people are living longer in places like India and Africa and the rates of dementia are swelling. Thus it seems logical that we should be sharing our resources on a worldwide scale, translating anything we learn to meet the needs of others across the globe. This may seem simple, but here Tiffany Cheng sensitively reflects on how cultural differences can make this process more complex. These are issues that we should consider in our routine clinical practice – with people from all different cultural backgrounds.

Having read Jess, Alice and Olly’s wonderful stories about their BCPPA journey, I carefully considered what else I could write about. Should I describe how exciting it has been for me to travel to see participants in all the lovely English cities that I have never previously visited? Although, we have not had the time to explore the cities after completing the post-intervention assessments at the participants’ homes. We simply getting on a train, and travel to an ‘unknown’ city. This has been exhilarating enough for me. However, after some thought, I have decided to write about something rather different.


As a student speech and language therapist from Hong Kong, I have always thought that London is very similar to my hometown. Both are multi-cultural cities, both are busy all the time. Some of these familiar elements were what attracted me to do my training in this city. But since starting this course, one thing that has concerned me, is how I can adapt the therapeutic skills I am learning here, to a completely different language – should I decide to work in Hong Kong after my training. However, following a conversation I had with Anna the other day when we were discussing the BCPPA project, I have really changed my mind.


In the meeting, Anna told me her experience in Hong Kong when she was invited to a dementia conference around a year ago. During the conference, she had a conversation with one of the professors from Hong Kong, discussing the appropriate forms of intervention for people with dementia in Hong Kong. That professor stated that many group interventions have been difficult to implement in this population, due to the underlying cultural variations in comparison to the western countries. People would rather stay quiet and avoid sharing their views in a group session because they are scared that they would look stupid if they give a wrong answer, or even if they give an answer that is different from the mainstream consensus. This story has been very inspiring to me, as I finally became aware of the importance of the cultural influence on therapy outcomes, it is not simply a matter of language.


These issues also immediately remind me of how I was educated when I was at school. I was always encouraged to be a passive learner in our spoon-fed education system. We would only put our hands up when we were 100% certain that we had the correct answer, we never ask ‘stupid’ question in front of the class and we would wait for the ‘model answer’ to be provided by the teacher. Having studied in the U.K. for 6 years now, I have now been told that ‘there is never a stupid question’, as it is these questions that make us think and learn.


Having realised how cultural differences could have an impact on therapy outcomes, I then reflect on how I could adapt BCPPA to the Hong Kong population in order to maintain its effectiveness. Even though BCPPA program is a 1:1 therapy, a lot of self-reflection is required. Both the person with PPA and his or her conversation partner need to participate in analyzing videos of their own conversations, to identify the facilitators and barriers in their conversations, in order to set their therapy goals. I would anticipate that in order to maintain the same level of effectiveness, the level of support required from SLTs would increase significantly. I am really hoping that the skills I am learning in my speech and language therapy training will allow me to adapt the BCPPA to effectively support people with PPA in another part of the world. Yet I must always bear in mind that culture is a vital factor that influences therapy outcomes, especially when working in a multi-cultural city, like London or Hong Kong.






The student voice: The privilege and challenge of working in people’s homes


As I mentioned in November and December there are currently four fantastic student speech and language therapists working on the BCPPA pilot study. Their role is to visit participants who are enrolled on the current intervention study and complete the post-intervention assessment. The students are all blinded to whether the couple they are visiting have had the BCPPA intervention we have designed on have had no treatment. Each time a couple consent to participating on the pilot study, the students make arrangements to visit them in their home to complete these assessments. In this insightful blog post the wonderful Olly Sawyer @OliverSawyerSLT talks about these experiences of entering people’s homes.


An exciting part of being on the BCPPA team is traveling up and down the country, visiting people with PPA and their conversation partners at home. During the journey to one such visit, I thought of the fantastic posts already up on the BCPPA blog, written by fellow students Alice and Jess. I considered how I could follow them. How could I put my own stamp on my blog post? And just like that, as I was walking from the train station to visit a participant’s house, I decided to write about what it was like to visit people at home.


On this occasion, I was greeted briefly by the partner at the front door, and before I could reply she had turned around, walking back down the hallway. “Come in Olly, would you like a cup of tea?”, she said. “I’d love one, thank you’”, I replied. I followed her into their cosy kitchen where I was offered a biscuit as I put my bags down. As the kettle was clicked on, the partner turned to me and said “You know, I’ve really been thinking about what we spoke about last week. I feel like I made it all seem rosy, when in fact it’s not”.


She was referring to the conversation we had had the week before, when I had been to visit her and her partner with fellow student Jess, to conduct a series of post-intervention outcome measures as part of the BCPPA project. Whilst Jess was busy conducting the language assessment and quality of life measures in the kitchen with the man with PPA, I was deep in conversation in the living room with his partner, completing questionnaires looking at carer burden and stress. I thought about the hugely challenging and personal nature of the questions, and how tricky it must be to answer them. “Perhaps I had made it sound better than it is, I don’t think I was entirely truthful” she said as she handed me a cup of tea. And we started chatting about how she had completed the measures. I reassured her she had provided the information we required. And she talked about the balancing act that is her daily life.


Another role of the student SLTs on the BCPPA project is ensuring the couple make some videos of themselves having conversations. This is another post-intervention outcome measure. We set up the iPad with them, making sure they understand how to use it, and leave the room. Then leave the iPad with the couple for a week, in order for them to film themselves to get a more natural picture of their normal conversation. While this couple were chatting I overheard the conversation about holidays switch quickly to the fox that was making its way through the garden. The couple sat closely together, watching it slink and sniff through the flower beds outside. Despite the man’s difficulties with naming and constructing full sentences, he was able to communicate that he would like to go somewhere warm on holiday this year and then chat about the cheeky fox. After the 10 minutes was up, I went back into the room and we all discussed the fox.


Reflecting on the experience later I considered what had happened. I had been sat on a comfy sofa next to a fireplace, decorated with family photos, achievements framed neatly on the walls, and with the TV guide sat upon the footstool. I had been conducting research in someone’s home. I thought about the immensely personal and private space of what we call ‘home’: for me, it is where I escape to, where I confide in my partner after a tough day on placement, and where I reminisce old memories and make new ones. ‘What a privilege’, I thought.


We are mere strangers going into their homes, until we sit down and have a chat. Speech and language therapists are in the lucky position that having conversations often forms part of our assessment and therapy intervention. I enjoy this aspect of our work, which inherently invites personal topics to come up in conversation. Being on the BCPPA project has allowed me to reflect more on what ‘home’ means to me, and how I would feel if someone came into my home to ask me questions and to assess my language. I can imagine it could be quite unnerving, but to sit down with someone and to have a cup of tea (Yorkshire, please) would settle me right in. As health professionals we must always be mindful of what it must be like to be in other people’s shoes, inviting a guest into our personal and private space.


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 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.