Sharing practice during COVID-19: Remote Dysphagia Management for People with Dementia

I recently put a call out on twitter asking the speech and language therapy community what they have been doing clinically to deliver services or support people with dementia.The response was so lovely, so many people are doing so many things. We are hoping to collate the information we have gathered so far for a report. However in order to do this we need links to articles, blogs, reports or policies. Many of those who came forward did not unfortunately, have any references. So we decided that this blog might be a great place to share these fantastic practice examples for the wider speech and language community. If you would like to share any of your initiatives please do get in touch.

The first blog on sharing practice for people with dementia during COVID-19 is from speech and language therapist, Janice Ko, who has written the following fascinating description of how she has adapted her practice:

Just before the government announced the recent lockdown, the nursing homes I support as a speech and language therapist decided to stop having visitors. This included community healthcare professionals. We negotiated with the nursing home managers to continue delivering services via telehealth, specifically to manage swallowing difficulties, thus teleswallowing. The majority of residents with dysphagia also have dementia. Nursing and care staff at the homes receive regular training on how to support communication and safe eating and drinking for people with dementia. However, because everything happened so quickly, I had not had time to establish any formal training specific to teleswallowing.

 

At the beginning of the pandemic the NHS recommended prioritising assessments and interventions for people with a high risk of aspiration pneumonia including those with progressive conditions (NHS England and NHS Improvement, 2020). Thus we quickly read and made sense of the available evidence and guidance, and put together a local policy on teleswallowing. The research indicated that the impact of teleswallowing had been positive within the UK and overseas.One example of this was work done at Blackpool Teaching Hospitals NHS Foundation Trust (2014) where they found that when comparing recommendations made during face-to-face versus remote swallow assessment there was 100% agreement on modified diet recommendations and only minimal difference (0.5 scoop of thickener) on fluid recommendations. The samples in this project included people with dementia who were described as having relatively ‘poor’ cognition.

 

The RCSLT Telehealth guidance (2020) suggested consideration of a number of risks when carrying out telehealth, such as issues related to technology and the communication barriers caused by remote sessions. Additionally, some other risks and considerations for people with dementia must be considered when assessing their ability to participate in teleswallowing including:

  1. Is it be ethical to carry out a session when the resident does not understand the risks specific to teleswallowing?
  2. Will it cause unnecessary distress if I, as a therapist, am present on a screen during the resident’s mealtimes?
  3. Will it be too distracting if the device is placed in front of the residents and verbal instructions are given to staff surrounding the resident during the session?

 

We concluded that the risks of not receiving speech and language therapy input for dysphagia, such as malnutrition, aspiration pneumonia, and death (RCSLT, 2005), outweigh the risks of establishing a teleswallow service. To account for the possible risks, pre-session briefing phone calls are provided to staff at the care homes, and real time training is delivered concurrently during the session for nursing and care staff. We have continued to adopt a flexible approach with teleswallowing. For example, as when planning a face-to-face session, should a resident not be suitable for assessment or the session cause the resident distress, the session is terminated. This approach has been possible thank to staff’s support.

 

During the remote sessions, I have realised the value of working closely with the multidisciplinary team in order to optimize the environmental factors during mealtimes. The early days of setting up teleswallowing were challenging for both myself and the nursing home staff. It took us some time to adapt and solve issues that had never been highlighted before teleswallowing. As the service became established sessions have been running smoothly and importantly, outcomes of the sessions have been positive so far given none of the residents have developed any chest infections.

 

The biggest benefit of having the option to continue dysphagia management remotely is minimising the spread of Covid-19 during these unprecedented times. Thankfully the confirmed cases at the nursing homes we support have been low. Additionally, teleswallowing has allowed us to respond quicker to referrals, upskill staff and cascade benefits to other residents in the nursing home. As an SLT team we have also developed our own skills. And most importantly, we have reduced the risks of chest infections and other dysphagia related issues that can lead to hospital admission. These benefits are reflected in the summary presentation on teleswallowing (University of Cumbria, 2015)

 

Now that the pandemic situation has evolved and things are a little calmer, I feel it is time for me to reflect on what the ‘new normal’ will be for our service when supporting people with dementia in care homes. It also seems a good time to develop training materials for teleswallowing so care home staff can be more well-equipped and more confident. More personally, the opportunity to set up and carry out teleswallowing has challenged me to explore the possibilities of how technology can support more efficient and flexible ways of working and to adapt my clinical skills to better support my clients.

 

References:

Blackpool Teaching Hospitals NHS Foundation Trust (2014) Teleswallowing Service Evaluation Report. https://teleswallowing.com/wp-content/uploads/2014/12/Teleswallowing_service_evaluation.pdf Accessed on 19/06/2020

 

NHS England and NHS Improvement (2020) COVID-19 Prioritisation within Community Health Services. https://www.england.nhs.uk/coronavirus/wp-content/uploads/sites/52/2020/03/C0145-COVID-19-prioritisation-within-community-health-services-1-April-2020.pdf 19/06/2020

 

RCSLT (2020) Telehealth guidance. https://www.rcslt.org/members/delivering-quality-services/telehealth/telehealth-guidance Accessed on 19/06/2020

 

RCSLT (2005) Speech and language therapy provision for people with dementia-Position Paper. https://www.rcslt.org/-/media/Project/RCSLT/dementia-paper.pdf Accessed on 19/06/2020

 

University of Cumbria (2015) Teleswallowing – from Pilot to Service Transformation: barriers to the adoption of successful telehealth solutions. https://www.kingsfund.org.uk/sites/default/files/media/EBidmead%20Teleswallowing-Presentation%2017062015.pdf Accessed on 19/06/2020

 

Launching #BitesizeBC: Remote delivery of communication partner training

Roll up!!! We are launching Bitesize Better Conversations with our first online event on the 1st July from 1.30-2.30pm GMT+1.

 

As the current pandemic evolves, NHS services are in flux. Many speech and language therapy services are planning a graduated return to delivering a more “normal” service. The new normal is likely to include a significant amount of remote work, using video conferencing platforms to deliver interventions such as communication partner training. And communication partner training for people with communication difficulties and their loved ones is as important, if not more so, as it ever was.  But how best to deliver it remotely? There is growing research on the use of tele-therapy in speech and language therapy, but little of it focuses on communication partner training.

 

Back in April we posted a blog about how to use tele-therapy to deliver Better Conversations. Around this time Anna also ran a webinar on tele-therapy for NIHR’s @dementia researcher. These generated lots of positive responses both on and off social media. Many speech and language therapists reported the tips and hints to be really helpful for their clinical practice. Since then the Royal College of Speech and Language Therapists has published some very helpful guidance on tele-therapy.  But much more research is needed. The practicalities of remotely delivering CPT are a challenge, and we need to know if it is as effective as delivering it in person! We are in the process of gathering some data on this ourselves – so watch this space.

 

Continuing professional development is tricky to access at the best of times. Last November we were overwhelmed by the response to our Better Conversations Conference and training day. We had to turn people away because we didn’t have the physical space. The message that came through loud and clear from our SLT audience about using Better Conversations in the real world was that you wanted to be part of a community of practice that provided ongoing support. Well, guess what? The one positive thing about Covid-19 is that it has quickly made us all teleconferencing experts! No more room size issues. No need for 6 months of planning to pull off a successful event. So we’ve decided to launch monthly virtual CPD called Bitesize Better Conversations, #BitesizeBC. We plan to stream events live as webinars via Zoom. The first event will be held on the 1st July and will focus on the topical issue of delivering CPT remotely! Our speaker is Claire Farrington-Douglas, Consultant SLT at the National Hospital for Neurology and Neurosurgery. Claire will discuss her experience of remote CPT for people with acquired communication difficulties, specifically stroke and brain injury. She will share some examples from her practice, discuss the challenges and pass on some top tips. Then you will have a chance to ask questions and get advice.

 

We will also share our plans for future #BitesizeBC events, so join us and have your say! But if you can’t make it, don’t worry – you can send us an email to betterconversationsaphasia.pals@ucl.ac.uk with your suggestions for future CPT bitesize topics. We are also keen to hear from you if you fancy presenting a case, past or present – this could be for reflection or to get advice on planning your CPT intervention. Or perhaps you’d like us to keep you informed of up and coming events. Remember, if you share your email with us, you consent to us storing it on an encrypted hard drive for future Better Conversations-related mailings.

 

To sign up for this event, please email Suzanne at: betterconversationsaphasia.pals@ucl.ac.uk

We will send you a meeting link closer to the date.

Tele-therapy- remote delivery of Better Conversations

Just as the bubonic plague of 1347 accelerated the shift from arable farming to sheep farming in the UK, COVID-19 is changing our world perhaps for good. One example is a rapid jump in services being delivered remotely. Enlisting the power of the internet to enable us to continue delivering healthcare services to those who need them most has become a priority for many health and social care professionals. We understand that providing remote speech and language therapy contributes towards keeping people safe and well in their own homes, and may prevent them from becoming the next wave of inpatients. All this change is likely to have a significant impact on the way we deliver services into the future.

Many of us are taking leaps of faith into telehealth, we may not feel equipped or skilled but we are feeling our way through. In response to this many SLTs are sharing their experiences and their concerns about the in’s and outs of telehealth. RCSLT and many trusts are sharing guidance on using various platforms, which is extremely useful. There is also a little bit of research on delivering telehealth interventions (especially more impairment based interventions) to people with stroke related aphasia (Weidner and Lowman, 2020) and PPA [Henry et al, 2018/2019].  The work done by Henry et al demonstrates that people with PPA achieved equal outcomes whether receiving therapy remotely or face to face.

To date, there is less research on delivering more functional interventions such as communication partner training (CPT) using telehealth. Yet given that many families we are working with are on lockdown or socially isolating, conversation seems even more important than ever. When conversation breaks down the impact of a communication difficulty really hits home. People with aphasia and their families tell us that a key goal is to regain the ability to have conversations that go beyond conveying basic needs. We all value our ability to have conversations like that, especially now when we are all feeling the impact of uncertainty and huge changes to our lives.

When we have a conversation with someone, we follow rules. But we are largely unaware of this. Rules about who talks when (turn taking), and about how and when to fix misunderstandings or correct ourselves and others (repair). You thought conversation was a messy, free-for-all? Think again! But have you noticed how we’re all having a bit of difficulty with these rules now we’re using video platforms to communicate? There’s much more overlap and vying for the floor. Sometimes it’s because there’s a bit of delay, other times perhaps because we don’t pick up all the non-verbal cues that go with turn taking when you’re in a room with someone.

People with aphasia and PPA (particularly in the early stages) pretty much retain their knowledge of the rules of conversation, even when words and sentences are extremely difficult. They are competent social actors. Which is extremely good news – a real strength on which to build. Usually we’d do this by offering CPT, and we’d be in the room with the person with a communication difficulty and a family member or friend, their chose conversation partner (CP). We’d discuss their conversations together, possibly watch some examples from a video recording, identify facilitators and barriers, and agree some goals to work on. These are often very concrete strategies such as giving more time to talk (for the CP) and gesturing when having a word finding difficulty (for a person with aphasia or PPA). So far so good – that’s all telehealth friendly isn’t it?

Over the last month or so, we have been trying out remote delivery of our approach to CPT, Better Conversations. We have found that delivering CPT remotely can actually improve our insight into the reality of everyday conversations by providing a window into the home. Being able to assess a person in the comfort of their own home is a privilege and often people are more able and comfortable. They have more resources at hand to support conversations (their belongings, photos and gardens) and feel much more at ease than in an outpatient office. Perhaps video conferencing will prove more useful than we thought.

The Better Conversations CPT approach includes video feedback as a way of giving people insight into their communication behaviours. In preparation for Better Conversations with Aphasia (BCA) therapy, the person with aphasia and their chosen CP make a few short videos of themselves at home having a chat. This can be on their own device like an ipad, or we lend a camera. Filming works best at a point in the day when people have something to decide on, plan or catch up about, or even to reminisce about. We don’t do the filming – people do it themselves without us hanging around making them self-conscious.

This is where remote CPT can become tricky, but we have found that where there is a will there is a way. People with aphasia, dementia and their families understand the risks of using the internet and are willing to share videos of themselves for CPT therapy. They will often problem solve the recording and sharing of the clip themselves. Once securely transferred to you, the video provides you with the opportunity to prepare for delivering the intervention by viewing it to choose relevant clips you’d like to focus on in therapy. Once chosen, you can flag the relevant parts of the video for your client to view on their device, alternatively you can use a video conferencing platform that allows you to split the screen and show the video to them that way. There are many creative ways of sharing a video and it remains an important component of our remote CPT.

Recently several clinicians have contacted the Better Conversations Team to ask for advice on delivering CPT remotely. Here are our tips and hints:

  • Email handouts to the people at least a day in advance so they can print them off
  • Even if you have pre-arranged an appointment a week earlier, remind them the day before- and remind them of any homebased tasks you agreed e.g. making a video
  • Let people problem solve how they would like to get a video to you – people can come up with some great ideas that work for them. Some examples are using WhatsApp and file transfer platform called Signal (both are encrypted)
  • Video recording remains a key component of some CPT approaches, so do not shy away from this
  • Remember that BCA is freely accessible to anyone who sets up an account, and lots of the modules have an aphasia-friendly route through the information – maybe people would like to access it themselves to watch video clips of other people with aphasia having conversations
  • At the start of every session do provide a verbal outline of the session structure – virtual sessions are often much more likely to be led off plan than real life sessions, so having a structure is important
  • Provide opportunities to chat to people too, it is amazing how comfortable people are with video calls, and you will have an opportunity to suss out their skills
  • Make sure you give people feedback on whether you can see them properly – they may not realise they are not fully in the picture
  • Looking directly into the video helps people at the other end feel you are making eye contact with them.

The Better Conversations with Aphasia therapy programme is freely available to SLTs here: https://extendstore.ucl.ac.uk/product?catalog=UCLXBCA  The resource also has CPD materials including modules on What is conversation?’, and ‘What is conversation like when you have aphasia?’. A lot of this material is aphasia friendly. There are videos of real-life conversations between people with aphasia and family members.

(Written by Dr Suzanne Beeke and Dr Anna Volkmer)

Weidner, K., & Lowman, J. (2020). Telepractice for Adult Speech-Language Pathology Services: A Systematic Review. Perspectives of the ASHA Special Interest Groups5(1), 326-338. https://pubs.asha.org/doi/pdf/10.1044/2019_PERSP-19-00146

Dial, H. R., Hinshelwood, H. A., Grasso, S. M., Hubbard, H. I., Gorno-Tempini, M. L., & Henry, M. L. (2019). Investigating the utility of teletherapy in individuals with primary progressive aphasia. Clinical interventions in aging14, 453. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6394239/

SLT for our self-isolating communication impaired patients may be essential to keeping them safe

People with communication difficulties are often already isolated and vulnerable even prior to the current pandemic. For many their only social contact might have been the one dementia coffee morning, their local shopkeepers, the visits from the health and social care professionals, or perhaps their paid carers. Some might have children and grandchildren, or friendly neighbours, but these might actually also be their lifeline for care. Many of these lifelines are being removed or limited in the current COVID-19 crisis. This is of course a measure being undertaken to keep people safe, but for many this may also put them at risk.

There is a very real concern that many of our clients with communication difficulties may simply not understand what Coronavirus is, the risks and the current government recommendations. We work with people with stroke or dementia related communication difficulties who often don’t understand spoken or written language. We work with people who may have difficulties in judging or weighing up risks. They may not understand this invisible threat- you can’t touch or see COVID, it is quite an abstract concept. This means they may also not understand what recommendations mean for them and their families.

Many of the people we work with have families and carers who support them, who are trying to discourage them from going out. Who are trying to explain this invisible threat. One family member told me she was trying to compare it to the Second World War- but you could see that threat, hear the planes and see the bombs. Another told me that she tried to stop her mum going out on her daily bus ride – but her mum (who has a compulsive daily routine) became angry and started shouting. Another wife told me she didn’t want to put herself at risk of aggression. Despite their family members perhaps lacking the decision-making capacity to understand the risks and therefore one could say it would be in their best interest to detain them at home- is this even feasible? Someone asked what they could do for their loved ones if this lockdown is enforced – would their loved one be arrested or sectioned if they didn’t follow the recommendations?

Many of those with significant swallowing difficulties- who may experience silent aspiration (fluids going into their lungs) will already have an increased risk of chest infections. And thus fall into a group of people at increased risk of serious consequences if they do contract the virus. This only underlines the need for us to support them at home. To provide that vital lifeline. To help them avoid COVID-19, to reduce social isolation, to reduce the trauma of the current situation, to manage both physical and mental health.

I spoke to a colleague who reported that she was going through her list of clients and traffic lighting them in terms of risk. She told me that some of her clients usually had carers three times daily, but these were being reduced to once daily. So she was planning regular telephone calls to keep in touch with these individuals to try to keep an eye on them and flag them up before they just ended up being admitted and contracting COVID-19 anyway. 

Other organisations including the Royal College of Speech and Language Therapy have developed accessible information about COVID-19 to support people who are trying to explain this to their loved ones.

Support groups (including the UCL Rare Dementia Support), third sector organisations (including Dyscover) and charities are offering activities online (The Include choir are running online choirs). Many other individuals and organisations are reaching out to try to provide support- such as virtual conversation groups. But often people do not know about these supports unless we tell them about them. So it remains important that we point people towards these valuable tools!

Problem solving is also a key component of our role. Suggesting how to maintain a routine, developing accessible timetables, suggesting non-language based activities to engage people at home such as dominoes, drawing, listening to music, gardening, sorting out kitchen cupboards.

Equipping some individuals with wallet cards and contact information explaining their diagnosis could help keep them safe if they are still continuing to go out and about.

COVID isn’t only about the people in hospitals, it is also about those vulnerable outside of hospital. SLT still have a role in keeping them safe and preventing them from becoming inpatients with COVID.

What motivates us: Training to be a speech and language therapist

Every year I jointly supervise a group of speech and language therapy students who help us in collecting data for the Better Conversations with PPA research study. Along that route we hope to inspire them to consider a clinical academic career and be enthusiastic about research. Social media is a great source of research, professional development and support. So we invite all our students to contribute to this blog as part of their experience on the project. Of the five students working with me this year Tara’s is the last, but by no means the least. Tara raises some really important points, about the challenges of speech and language therapy training. She really highlights that the true motivation and enthusiasm for what we do comes from the people we work with:

When our supervisor, Anna, asked us all to write a blog, I can’t deny, I felt non plussed. Not to be self-deprecating, but what could I say that would possibly be of interest to the general public. The most I get involved in social media is to post a rare Insta selfie or picture with my friends just to remind people that I’m still alive and well. However, after some reflection that a blog is perhaps not the worst thing your supervisor can ask you to do, I decided to give it a go and talk a little about me and how I’ve found myself here today (in the world of primary progressive aphasia as a future speech and language therapist that is).

 

Going into my second year of speech and language therapy I have to say I have felt considerably less motivated to engage in my studies than my first year. The first year was very intense and needless to say I took the summer break not thinking about uni AT ALL. As a result, I feel like I’m having to teach myself how to read and write all over again. Thankfully after talking to some of my course mates, I discovered I was not the only one to get these summer blues. One friend suggested it may help to remind myself why I chose this profession and the journey I have been on to get to this point.

 

For a long time I had never heard of speech and language therapy, let alone primary progressive aphasia. It wasn’t until my final year of studying Psychology at undergrad that I was sure I wanted to pursue a future as a speech and language therapist and consequently started building up my experience of anything speech and language therapy related. During my gap year I had the honour of shadowing a highly specialist speech and language therapist in Swindon who told me all about a pilot study they were running for individuals with primary progressive aphasia called Better Conversations with PPA. The speech and language therapist was so enthused and even said if I got into UCL I may bump into Anna whom she described as a ‘very big name in the world of primary progressive aphasia and somewhat of a legend’. A year and a half later and I find myself working on this same project with Anna as my supervisor! It’s funny how these things work out.

 

Since then, I’ve just completed my second visit for the project and my knowledge of primary progressive aphasia is expanding. My first visit took just over an hour and the lady showed only very mild word finding difficulties. My second visit took over three hours and the lady had considerable difficulties across the board, bearing in mind she was a lot further into her diagnosis. However, what really struck me about both these ladies was that they were probably two of the most positive people I have met. Both of them deciding to not let their diagnosis define them and still rated their quality of life extremely high (probably giving me a run for money at 24 years old!)

 

Before this, my experience of dementia was a little different. I briefly worked as a carer in a nursing home over the summer where most of the residents had dementia. Similarly to my project, the best part of this job were the residents I was interacting with. Although I was new and had much to learn, every member of the care home was so appreciative that I took the time to say hello, ask how they were and how they would like to be supported. I remember several of them commenting on my lovely smile and eyes, making me blush in the process. To this one women I would say ‘see you later’ after I finished helping her and without fail she would reply ‘alligator’. To which I would always say ‘in a while crocodile’ and so became our ritual. I feel like what these residents craved most was someone taking the time to talk to them, keep them company and just being there. It just demonstrates how vital communication is for an individuals well-being. Thankfully it reminds me why I’m becoming an speech and language therapist; to help people communicate and develop those relationships that impact on quality of life so meaningfully.

 

So, reluctantly I admit, perhaps this blog entry was a good idea (Thanks, Anna) as it’s helped remind me why I chose this path and the exciting possibilities that await me as a future speech and language therapist.

 

 

 

 

Student SLTs giving voice to people with PPA

The PPA branch of the rare dementia support group at UCL recently held a meeting focused on speech and language therapy. Over 125 people attended. Many had a diagnosis of PPA, others were family and friends of people who have a diagnosis. At the meeting we invited five student speech and language therapists to participate in supporting conversations between people with PPA and other people with PPA using total communication supports (gestures, pictures, drawing etc). This was a rare opportunity. I also teach the student speech and language therapists about PPA on their training, and I offer research projects working on the Better Conversations with PPA study. Students can have an extremely powerful voice themselves. They are the future generation of clinicians who will be working in our NHS and independent system.

Here are some wonderful reflections from one of our current students Amy Bass on her experiences and role on this project as well as part of the UCL Giving Voice Society and how these opportunities to give a voice to people with PPA overlap:

I have recently begun my research project as part of my speech and language therapy masters at UCL. And, as I am sure you will guess, this is with Anna Volkmer working on her pilot study. When I first read about this project, I had no idea what Primary Progressive Aphasia (PPA) was. As an undergraduate I studied Psychology. Most of my experience at this point was with children/young adults. I hadn’t really met anyone with any form of dementia.

 

The main thing that caught my eye about Anna’s research was the fact that people with PPA tend to be much younger than my perception of the age people are diagnosed with dementia. People with PPA are generally diagnosed around my mum’s age. This really made me think. How would my mum continue to do all she does for my family if she had a dementia diagnosis? And her work is her life, would she be able to continue in the career she has worked so hard to be in? This must be a massive challenge for people living with the condition.

 

Working on Anna’s project, I get to visit people with PPA and their communication partners (often family members) to collect data. Before my first visit I was provided with the opportunity to learn a lot about people with PPA from Anna, this included the different types of PPA, symptoms, diagnostic criteria and we even got to watch a few videos. This was very helpful but I was feeling very nervous about completing my visits as I still hadn’t actually met anyone with PPA in person.

 

On my first visit I met a lady with PPA and her partner. I had a great time with them and was so excited for my second visit. My second visit went very well too and I enjoyed meeting this couple too. But over the course of these visits I became much more aware of how different people with PPA are. I also realised how little people actually know about PPA. Both couples reported that they had never even heard of PPA before being diagnosed.

 

During this year of university, I have the pleasure of being treasurer of the UCL Giving Voice Society. The aim of this society is to give voices to people with speech, language, communication and swallowing difficulties. One way we go about doing this is by spreading knowledge in order to make people more aware of different SLT related difficulties. I hope, as part of my role in the Giving Voice Society and on this project, that I am able to support people with PPA in having a voice by helping to spread knowledge about PPA. In completing this project and meeting people with PPA, I have found myself talking to friends, family members, new people I meet about PPA. Little by little I find myself slowly spreading awareness and giving a voice to people with PPA.

Primary Progressive Aphasia: In plain English, by an SLT student

 

Following my slow recovery from submitting my thesis (yes!!!) a number of the speech and language therapy students working on the BCPPA project with me having been writing some great posts. Recently @ChloeRush17 broached her own fears to discuss why to blog, and  @conniebaird_ discussed her experiences of poetry and dementia. Here Jen @jenSLT_ summarises a really interesting article about what partners observed as the early symptoms of primary progressive aphasia. Importantly Jen does this in plain English. This is a great way to share research, by making it accessible for everyone. Often research and academic writing is so complex it is difficult for people who are not experts in the area to understand what the research is actually saying:

 

People with progressive conditions (such as dementia) and their families often want to know what symptoms to expect and what their lives will be like in the future. They also want to know what can help. It’s very common nowadays to go online to try and find out more about a condition. The problem is that it can be hard to access the latest research at home. Some websites make you pay to read research articles. Some research articles use complicated language.

 

That said, it is really important to find ways to share research results with the public using clear language. It is also important to involve people with first-hand experience of conditions in research studies. I recently listened to a lady named Annette Dancer talking at a conference. Annette had a stroke around 5 years ago, which has affected her speech. Annette is now working as an advisor on a speech research project. She talked about how important it is to share research in clear language, so that more people can understand it and get involved. Check out her blogs about what it feels like to have speech difficulties and being involved in research.

 

In this blog, I have taken a really interesting research article from 2018. It is 11 pages long, so I thought it might be good to create a short summary of the results in plain English.

 

The purpose of the article

 

Primary Progressive Aphasia (PPA) is a dementia where language difficulties are the leading symptom. Yet not much is known about the early signs that a person might have the condition.

 

A person’s partner may be the first to pick up on a change in communication or behaviour. The researchers interviewed 13 partners of individuals with PPA to find out what early symptoms they remembered.

 

The results of the article

Here are the most common signs reported by partners for the different variants of PPA.

Semantic variant:

  • Having trouble understanding or finding the names of common words. This might be inconsistent in early stages.
    • An example would be the person with PPA trying to ask their partner where their umbrella is, but not being able to find the word ‘umbrella’. Or, not understanding the word ‘coffee’ when said to them.
  • Social behaviour changes. This means the person might find it harder to work out what other people are thinking or feeling and respond appropriately. This happens at the same time as changes in language. This can include mood swings or coming across as uninterested in what others are saying. Interests that couples once shared in common might be lost.
    • An example would be the person with PPA not really taking part in chit chat with their partner anymore.
  • Getting lost in familiar places. The person with PPA might not recognise places they have been to many times (like their workplace) or be able to find their way around a familiar setting.
    • An example would be getting lost in their regular supermarket or not recognising the road they live in.

 

Logopenic variant:

  • Social behaviour changes. This means the person might find it harder to work out what other people are thinking or feeling and respond appropriately. This happens before changes in language are noticed. It is sometimes described as the person “switching off”.
    • An example would be not showing as much interest in talking to family and friends, or not being as intimate with their partner.
  • Word finding difficulties. This means the person will find it tricky to find the word they want to say and it may take them quite some time.
    • An example would be not being able to get out the name of a place they have been to, or ‘talking around’ a word (giving a definition, saying words with similar meanings).
  • Attention difficulties. This was less common than the other signs. This might mean the person finds it harder to concentrate and routine tasks take longer to do.
    • An example would be the person with PPA not being able to do paperwork as quickly they used to or making errors.

 

Non-fluent agrammatic variant:

  • Speech and language difficulties. This was the earliest, most noticeable sign for partners. This includes difficulties saying sounds, putting sentences together and using grammar.
    • An example would be the person with PPA saying “go street” instead of “let’s go down the street”.
  • Social behaviour changes. This means the person might find it harder to work out what other people are thinking or feeling and respond appropriately. This happens later on, after changes in speech and language. Changes in social behaviour can be more subtle than in the other variants.

I hope the summary is useful to readers who don’t have access to research journals or don’t like lots of jargon. It’s been a useful activity for me to do as it really makes you think about how to explain things in a concise, understandable way – something which is key to being a good speech and language therapist. Thanks for reading!

 

References:

Pozzebon, M., Douglas, J., and Ames, D. (2018) Spousal recollections of early signs of primary progressive aphasia. International Journal of Language and Communication Disorders, 53(2), 282-293.

To blog or not to blog…reflections of a student SLT

Every year I ask a group of students working on the BCPPA project to challenge themselves to write some blog for me. Social media is such a useful way of sharing clinical practice and finding evidence. We know that twitter is more accessible than peer reviewed journal articles, and many SLTs report using twitter for CPD activities. But getting started can be intimidating and challenging. One of the current student speech and language therapists, Chloe Rush, wrote a really insightful discussion on how this can feel. I think many people lurking on twitter, and even those using twitter will empathise. Sharing this I think is a great way of opening up a discussion on how to feel comfortable putting yourself out there:

When Anna challenged us to write a blog, the part of my brain that feels a general aversion to social media lit up. ‘The Blog’ would pop into my head at the strangest of times – in the shower, during lectures, whilst squashed into a London tube on a morning commute – and I would feel a nervous twinge.

I began to wonder why I felt like this, after all, working as a speech and language therapist is about connecting with people…

…Last year I did some (vital) research into the latest Disney films so I could successfully engage a group of primary school children in language therapy.

…I’ve shared placement videos and experiences with peers to get a glimpse into the huge range of speech and language therapy work going on across London.

…And as part of the BCPPA project, I’ve visited couples who have received the Better Conversations therapy. It’s been a privilege to share my experiences with them, and everyone has been so open to welcoming us into their homes and offering personal stories in return.

So why should connecting via a social media platform be any different?

It’s so important as a clinician or researcher to share what you’ve been working on with clients, other clinicians, other researchers, students, and anyone else who might be interested. We all have unique experiences to share, and thoughts which other people haven’t been thinking. I loved hearing about the poetry group from Connie in her blog, as it gave me a little insight into a world I knew nothing about.

Chatting with Anna recently, she spoke about a conference she’d attended. She met therapists from the US who are also researching PPA and was so excited to hear about similar questions they had been asking all the way over on the other side of the world. Now returned home, the group can use social media to keep sharing their thoughts and hearing about each other’s work.

This has really encouraged me to see the benefits of using social media professionally to connect, learn, engage, ask questions, and ponder ideas. Since starting to work on the project, I have written my first blog post and am the proud creator of a few tweets! I hope that as I develop as a therapist, I continue to actively engage in these platforms, joining a community of clinicians and researchers who are keeping ideas in the profession alive and current.

Shared interactions through poetry in dementia

This year I have five new student speech and language therapists doing their project module with me- working on the BCPPA pilot study. As part of their project work I have challenged each of them to write a blog- just to have a go at disseminating and networking in the professional social media domain. First off we have Connie Baird , who has shared a really fascinating and exciting experience of working with people with dementia using poetry to support interaction. Such a creative and simple idea.

 

Since this is the first time I have ever written a blog, I spent some time thinking about what to write. It was surprisingly tricky to decide, but I’ve decided to talk about how I first began working with people living with dementia.

 

During my undergraduate degree, I joined a shared poetry group for nursing homes and hospital wards, which used literature to help build social bonds between residents. The scheme focused on improving quality of life using bibliotherapy, an intervention that looks at an individual’s relationship to literature – their memories and their responses to it. Sessions would consist of someone (usually me or another student) reading aloud a poem, followed by a discussion as a group. I thought I would share some poems that were particular favourites, and some of the memories that go with them.

 

A popular poem was Daffodils by William Blake. We always started the session with one of these classics, as many residents were made to memorise them in school. It was a great way to get people involved – in one session, I read just the first line before a lady in the back finished it off for me, word for word. I didn’t get tired of reading this one almost every week, as the stories that were shared were always entertaining – lots of people shared tales from school and memories of growing up in rural Nottinghamshire. We all enjoyed reflecting on sunny Spring days even when it was raining outside.

 

When I read aloud The Lamb and The Tyger, one man was reminded of a teacher with an undying love for William Blake. It brought him back to mornings at primary school, standing in front of his class, reciting the poem himself. These poems wrestled with religion and theology, which led to some interesting discussions about respecting people’s beliefs. We used to take out one of Blake’s drawings during the reading for people to look at and comment on, which helped those who weren’t able to hear as well. Blake’s poems are full of rhyme and repetition which also helped participants engage with what they heard.

 

We also read less high-brow stuff. A favourite was Pam Ayres, who entertained us with stories of eccentric aunts and irritating husbands. I quickly became familiar with her poem Oh I wish I Looked After Me Teeth, as it proved ever popular with those who could remember her from late-night television in the 80s.

 

An older poem might bring back memories of the classroom, whilst a poem about winter might spark a conversation about Christmas and snow. Even nonsensical poems such as Carroll’s Jabberwocky could inspire a chat about cadence and rhythm. I often read Carroll’s stuff when I felt like the session was going haywire – when someone was falling asleep, or another person told us they were bored. If you read Jabberwocky in a loud, animated voice it can awaken and excite the room.

 

Not all of our sessions were successful, and lots of people were not interested at all. On reflection, our 1:1 sessions were often the best way to create conversation, especially with those who didn’t get along well in a group. I’ll always remember working with a man – described as non-verbal – who ended up adding a few words about his childhood in Scotland after a reading of Robert Burns’ A Red, Red Rose. Finding his reason to communicate felt like a huge win.

 

This type of therapy is not in an SLT’s remit, but it’s helped me think about other ways I can encourage communication in my (future) profession. In years to come, I’d like to explore how shared reading groups can be run with SLT support. Dr. Kevin Harvey organised the group in Nottingham, and has also written a paper about on the power of shared reading, which can be found here.

 

Hope and excitement at the British Aphasiology Society Symposium 2019

I attended the British Aphasiology Society Symposium in September this year with a few of the @UCLLangCog researchers including fellow PhD student and SLT Firle Beckley. It was a really inspiring conference and given that Firle had written a wonderful write up of the conference it seemed sad not to share the key highlights and learning points. @FirleB has kindly shared her experiences of the conference here so no-one on the twittersphere needs to miss a thing!

I have to say, the 2019 BAS Symposium was one of the most enjoyable and constructive conferences I have ever been to (and not just because I received best lightening talk on the first day!). If I were to review all my highlights in depth I would be here until Christmas, no one has time for that. So here are my themed highlights. For me there were two key themes to this conference. One gave me hope and excitement about the future of aphasia therapy, and the other practical reassurance about how to get there.

 

The first theme was creative wellbeing. Ian Duffy a survivor of two brain hemorrhages powerfully illustrated the importance of creativity at the conference opening with his beautifully shot video ‘The Fence Painter’ (https://youtu.be/Jfv3BT6mBR0). From pebble collecting, to lawn mowing with a difference Ian revealed how creativity can be motivational and a deeply personal companion when defining your post stroke self. This creative wellbeing continued in Ciara Shiggin’s talk. Ciara argued the case for moving away from the classic pathogenesis cure to salutogenesis i.e. identifying goals and outcomes to support a person’s mental health and wellbeing. A simple flip and therapy becomes a positive activity, pursuing wellness rather than chasing ‘cure’. She demonstrated how salutogenesis partnered with an asset based approach changed the nature of living well with aphasia in Norwich, including the opening of the Community Aphasia Café and UEA’s Conversation Partner Training Scheme. The creativity these two changes created in Norwich were tangible in the glowing, and emotional in the introduction Linda Watson from the UEA Aphasia Research Collaboration gave to Prof Simon Horton. Her testimony about the impact Simon and UEA’s Conversation Partner training scheme had on her self belief and confidence was inspiring. Sarah Northcott (City University) used her 5 minute Soapbox slot to describe the power Solution Focused Brief Therapy (SFBT) can have for a person with aphasia’s mood. Her case study brought the power of SFBT to life, as she explained how it can be used to acknowledge the darkness aphasia can create aphasia, whilst looking for the light. Other creative presentations included Prof Jane Marshall’s EVA Park, a virtual world including two new updates: a talking penguin, and Ruby Robot, an avatar you can practice your narrative with. One criticism of EVA Park from the audience (you know who you are) was that EVA Park is too nice. Watch this space for ‘DARK Park’ an altogether grittier experience…

 

The second exciting theme of the conference for me was the speech and language therapist’s role in facilitating living well with aphasia. Prof. Linda Worrall championed this with her opening talk about the 7 habits of effective aphasia therapists. A great talk and now published paper (Worrall, L. (2019). The seven habits of highly effective aphasia therapists. Aphasiology. https://doi.org/10.1080/02687038.2018.1487022). Prof. Linda Worrall gave seven key habits clinicians can use to reflect on their own practice. These highlighted the importance of building rapport, and our role in ensuring the end goal of therapy is living well with aphasia and being able to self-advocate. Indeed, Sarah Scott on day two of the conference highlighted her biggest challenge to living well with aphasia being the public not understanding what aphasia is. The invisibility of aphasia is a big problem. Prof Nina Simmons-Mackie highlighted the abysmal rates of understanding of aphasia in the US and UK in her closing keynote of the Symposium. However she offered a simple change we could all make as a positive start towards improving public awareness. Next time we are asked what we do, rather than saying “an SLT” (and then having defend the profession as not being all about elocution), describe what it waking up with aphasia is like: “imagine waking up in a hospital, you have no idea what has happened and when you try to find out, you find you cannot talk, the right words do not come out of your mouth, and no-one understands you. That is aphasia and I work with people who experience this”. Prof Nina Simmons-Mackie explained how making the impact of aphasia real alters people’s responses, leading to probing questions about the nature of aphasia and whether it could happen to them. One small step for we can all take to raise UK awareness of aphasia above 5%.

 

Finally, my key learning points from the Symposium where:

  1. There are many creative technologies out there to support your clinical work from the comprehension aphasia therapy app Cue Speak by Jon Hunt, to app supporting creative writing (MakeWrite from City University).
  2. Technology cannot replace a good therapeutic relationship, which is at the heart of all good interventions.
  3. People with aphasia report using their phones more than other devices on a daily basis to compensate for their aphasic difficulties.
  4. There is a good therapeutic rationale for working with people with Primary Progressive Aphasia. Living well with PPA is about developing good conversation flow (Better Conversations with PPA) rather than re-learning words that will be lost again further down the road (see Anna Volkmer, UCL for details)
  5. Improving discourse and conversation skills for the PwA and conversation partners is key to improving participation in wider society.
  6. SLTs need to unite globally to raise awareness of aphasia within the public domain. Prof Nina Simmons-Mackie’s quote of a 5% understanding by the UK public as to what aphasia is (someone thinking it was half a facial) is not good enough. Living well with aphasia is a community, not individual responsibility!