Speaking out: My experience of being diagnosed with PPA

A few years ago I received a call out of the blue, from a lady who had been given a diagnosis of PPA and no further advice. We spoke for almost an hour.

Since then Helen and I have spoken regularly. More recently she identified that she wanted to share some of her journey for the benefit of others. Helen wrote this blog for me, which she asked me to post here. We felt this may be an opportunity for others to learn from and understand how it is to live with PPA. Helen and I have also recorded an interview for the PPA rare dementia support support group website. Once edited and uploaded this will provide a fantastic resource of information, support and an insight to living with this diagnosis for other people with PPA, their families and professionals also.

I am so grateful and humbled by Helen’s passion to share her journey:

Helen’s experience of being diagnosed with PPA:

I really noticed that I couldn’t find words in July 2016, whilst working at school.  I would be talking and then blank, the words didn’t come.

A year passed and I was aware that my speech wasn’t clear so (although I have tried not to go to doctors in my life) I went to my GP in August 2017.  Fortunately the GP was really good at listening and he referred me for more tests.

I had no idea that this would be a trigger to be referred to a dementia screening service.  That was not what I was expecting and it was the first time that my symptoms were described as being under the umbrella of dementia.

I had the memory tests and it was obvious that it wasn’t a memory led problem but I was sent for a scan.  The MRI scan of the brain showed evidence of mild asymmetry of medial temporal lobes.  This clinical picture suggested a possible language disorder so I was then referred to a memory assessment service in Horsham.

I had a series of 8 hours of very comprehensive tests  with a psychologist who was incredibly sensitive and thorough. .On 14 May 2018 she asked for family members to come for the outcome of the tests. I was told that everything suggested Primary Progressive Aphasia.  As there are 3 main sub types at the moment progressive non fluent was the most accurate match.

I was ok with the diagnosis at that time because I knew it fitted what I was experiencing.  It was more difficult for my daughters as there was no information about the condition.  It was mentioned that I might only have 5 more years of living, giving up my driving licence, sorting out wills!!!  I was referred to a specialist Doctor with a waiting time of 6 months.

Sadly the system doesn’t cater for the ongoing patient with aphasia in this situation.  I was visited by a dementia nurse (who was very good and had researched PNFA) but was used to referring people with a memory led dementia.

I had two break throughs in the next part of my journey.

I found the Rare Dementia Support group and spoke to Chris Hardy who is the most superb, kind human!!  He sent a letter to me which I file ‘Best Letter Yet’.   I was reading about PPA and learning so much of my condition.

On one of the newsletters was the phone number for Anna Volkmer who has been instrumental with the use of speech therapy with PPA patients.  I couldn’t believe that she picked up and spoke to me for 45 minutes and I learnt so much from her and I am always indebted to that.

Anna also directed me to speech and language therapy at Queen Square.  The therapist there spoke so kindly and informative to me and I was sad to hear he was returning to Australia.

In July 2018 I went to a support group at Queens Square and at lunch I was talking to somebody and the consultant read my name badge and said I was on his list for September.  I think I nearly fell over!!! It felt so personal.

In September I had an appointment with this consultant.  This led to another brain scan and that was followed by a lumbar puncture (to eliminate the Logopenic variant) and also genetic testing which was negative.  So I am in a non-identified sub group.

In November 2019, I assisted with the Research Programme form Queen Square. (3 days)

One of the projects is the link with Music and dementia which is of course close to my heart!!

As part of the treatment at Queen Square I was offered speech therapy.

I am finding this very helpful, identifying strategy, learning more about speech production.

I am an active teacher of music and in that area I don’t have problems.

Music is a language of its own.  It doesn’t need words and that is so comforting.

I won’t speak of my struggles at the moment because in the most part I haven’t degenerated at any fast pace.  I feel lucky that the disease is progressing slowly.

What is clear, every patient is very different.

Student blog: Why choose dementia?

This is the time of year when final year MSc student speech and language therapists are busily writing up their project dissertations and first year MSc student speech and language therapists are just getting started. And always a time of year when we start encouraging the new project students to get onto twitter and write a blog.

New students spend time midway through their first year selecting which projects they want to participate in. For some the decision is logical and many projects speak to their underlying interests and experiences. In this really engaging and personal account, one of my current students Nadia describes her journey so far.

Joining the BCPPA project was a complete no-brainer for me since I’ve been around people with dementia from a young age and devoted a significant amount of time to researching aphasia during my undergraduate. For Anna’s blog, I’ve decided to write up the very abridged version of events that led to me joining the BCPPA team!

An early memory of mine is going to visit my great-grandmother at her nursing home in North Carolina when I was about 5-years-old. She was in the later stages of dementia and had, at this point, forgotten most of her English. Her family were Spanish immigrants and had moved to the US to work in the coal mines of West Virginia. I felt a greatly reduced connection with her at this age because our communication consisted of simple English-Spanish translations made through my father. I imagine we still got our main messages across and I’m very glad to have met at least one of my great-grandparents.

Difficulty communicating with my family was a constant in my childhood. I was raised in English, so could easily speak to my American family, but speaking with my Finnish family required good English skills on their part, or use of my mother’s Swedish-English translating skills. Confusingly, my Finnish family belongs to a Swedish speaking minority in Finland that lives along the west coast so we don’t speak much Finnish at all. However, the language barrier never stopped my brother and I from playing with our younger cousins and communicating through various gestures and actions.

Eventually, we moved to Finland to live closer to our Finnish family and so my mother could return to school and start her career. I entered secondary school and learned Swedish while my mother entered university to become a registered nurse and later join the field of palliative care. Our bookshelves began to fill up with titles such as “How We Die” and “The Study of Dying” while my mother’s articles on topics like euthanasia and end-of-life care structure began to appear in the local newspaper, making progressive conditions and death a normal topic in my household.

The year I turned 18, I got a summer job working on a rehabilitation ward in the local health service. The patients included elderly people recovering from surgery as well as individuals with dementia. My role mostly involved cleaning and serving food, but also included time for socializing with the patients. While I couldn’t speak to everyone because of my crude Finnish skills, I did get to experience what conversations could be like with those individuals with dementia that spoke Swedish. I also observed how their conditions affected interactions with their families when they came to visit.

Following this summer of hospital work, I entered into my first year of a Psychology and Language Sciences undergraduate at UCL. I already had an interest in Psychology from my time at school, but wanted to study a joint degree since I thought doing plain psychology would be “too boring” at the time. I chose the UK because, in my opinion, it was “Europe, but in English”.

Modules in psychology and linguistics quickly fell off my radar as I was most interested in the neuroscience of cognition lectures and the modules that focused on communication difficulties, like stuttering and aphasia.  My interests pushed me towards a final year research project on language processing in background noise in people with aphasia. I was invited to join my supervisor’s aphasia group therapy sessions at her communication clinic to prepare me for the data collection portion of my project. From the very first group session, I knew this was the client group for me. Every individual’s experience of aphasia was so very different, and I felt that working with adults gave the opportunity for developing deeper connections with clients built on mutual respect. Once my project was finished and submitted, I was awarded the Tavistock Trust for Aphasia Student Special Prize for my research and had thoroughly caught the research bug.

Getting a Speech and Language Therapy qualification seemed like the natural next step for me so I applied for the MSc Speech and Language Sciences at UCL. The summer before I started the MSc was spent interning with the Neurotherapeutics Group at the Institute of Cognitive Neuroscience. My way into this research intern position was through a good relationship formed with my third-year tutor who happened to be a PhD student in the group. Therefore, I fully advocate for speaking up and doing the work in tutorials – good things can come of it! I spent two months transcribing recordings from tDCS research, helping out at focus groups where people with aphasia tried new therapy apps, and assisting in developing aphasic speech recognition technology. Definitely look into them if you are interested in digital therapy apps for your clients with aphasia!

Acquired disorders and working with adults in general are still where my interests lie, even after a year of placements at schools and modules on developmental disorders of speech, language, and communication. Seeing Anna’s project in the booklet was like a revelation for me because I would be able to work with both dementia and aphasia at the same time. It’s a field that I can definitely see myself sticking with in the future and joining the team has been a lovely experience so far.

Guest blog: Supporting students to support people with dementia during a pandemic

I recently put out a tweet asking if speech and language therapists could and would like to share their experiences and their work on how they have addressed the needs of people with dementia during the current COVID-19 pandemic. The response was overwhelming, from those who were trying things and those who wanted to know what to do. I think there remains a huge amount of work to be done. We won’t be seeing people back in our clinics or their homes in the flesh or without PPE for some time.

In this blog the wonderful Jen Whitfield and team have shared some of the innovative and creative ideas they have undertaken. I’d love to set something like this up here at UCL and UCLH! Perhaps we need a network of remote life story groups for people with dementia

Supporting students to support individuals with dementia during a pandemic

I was employed by the University of Sheffield late last year to cover as lead for the student-run Life Story Clinic within the Human Communication Sciences Department. Prior to this I had worked in an acute hospital setting and observed increasing numbers of individuals with a diagnosis of dementia being admitted to medical wards. I quickly learned that as SLT’s we are equipped with a unique skill set that can benefit individuals with dementia enormously. Whether it is communication, assessment, dysphagia or educating students at the point of access into their profession, supporting individuals with dementia has developed into a clear passion of mine. On joining the department, I was so impressed to see the amazing work Emma Yarwood (Occupational Therapist), Dr Jane McKeown (Senior Nurse & University Lecturer) and Dr Catherine Tattersall (Speech and Language Therapist and Director of Learning and Teaching for Health Sciences School) had carried out in establishing the life story group. The group has proven greatly successful in providing therapeutic benefits for clients with a diagnosis of dementia (and their families) as well as providing essential clinical experiences for continued student development.

 

Little did we all know a global pandemic was around the corner.

 

When lockdown commenced, we were led efficiently by our head of department, Judy Clegg, and quickly adapted to form working groups, meeting via ‘Google Meet’ and figuring out how we could support both our students, clients and the profession. There was an explosion of creativity amongst colleagues, with telehealth platforms trialled and assessed, placements pulled together, workbooks created, guidance written, evaluative tools created and all of this was then organised into a phased plan. In amongst this, the pertinent questions and concerns for me specifically were; How was lockdown affecting the clients we normally invited to our life story group? And how could we continue to support them without any risk to their safety? As the situation progressed and telehealth was being considered more widely, I began to ponder if we could provide life story work remotely for those who wished to continue and had the technology. And if so, could this also offer an opportunity for students to continue to develop clinically? Initial explorations posed more questions, along with real and imagined barriers, but after a little research, accessing Anna’s inspiring webinar, support from the department, including a team approach to investigating and using telehealth, and some extremely encouraging colleagues, it was time to just do it.

 

So far, we have carried out a small scale pilot with clients. This was to determine how we all coped with the software and how a life story session might feel over a computer screen. During this time, I was unsurprised to learn lockdown was impacting individuals and their families in equal measure. Notably, imposed self-isolation and reduced interaction was impacting communication. We know this can have a huge effect on ongoing social isolation, wellbeing, quality of life, relationships, sense of self and confidence. It is not possible to compensate for the positive effects of social interaction and groups, like our life story group, when you are expected to stay home. And as for families, whilst not reported, I expect there may well have been difficult moments that usually would be helped by simply getting out, accessing a support network, socialising or accessing groups/hobbies. And that is just the tip of the iceberg. The impact on quality of life for even the most robust individuals living with dementia during a lockdown may well be huge.

 

Whilst these effects were perhaps unsurprising, I was delighted to learn the impact a minimal number of telehealth life story sessions could have. Client/family feedback has been heart-warmingly and overwhelmingly positive. One reported increased communication even after the session ended, in a similar way it would do after a face-to-face group. Another hadn’t been communicating much since lockdown commenced, but spent an hour chatting with me, with plenty to offer and add to our conversation. The response has been of gratitude, when there was concern communication was declining. For me, the sessions have felt very natural and relaxed, even with a couple of moments of frozen screens. We haven’t had life story books to hand as yet, however we have had interesting talking points nonetheless, which suggests a clear advantage of seeing individuals in their home environment in this way. Whether it has been photographs, paintings, creations, an interesting coffee cup or in one instance, a life-like animated soft toy designed for individuals with a diagnosis of dementia, we have had some engaging conversations and I always find I learn something too. We even have a promise of one client’s first ever mobile phone to show to our students!

 

The next step is to carry out and then evaluate a small scale placement with a limited group of paired students to lead the sessions. Already, we have feedback that smaller sessions versus larger groups seem preferable when using this approach amongst this group. We start next week and I’m optimistic this placement will have therapeutic gains, but will also equip our students with some excellent clinical skills and experience using Telehealth sensitively with individuals living with dementia as we continue to carve out a new way of working through a global pandemic.

 

It has been a privilege to provide support in this way so far and to see the potential for great benefits for our clients as we roll this out. The advantages of social interaction and communication appear to be more important than ever for this group during this unsettled period of time, and life story work may be one way of SLTs and students providing this in a supportive way. I feel extremely grateful to be a part of such a forward thinking department, to have such a passionate and supportive team around me, to be able to offer such useful clinical experiences for our students and for the opportunity to facilitate support for the very group of people I have such a passion to work with.

 

Jen Whitfield (Specialist Speech & Language Therapist/Life Story Clinic Lead)

Guest Blog: Reflections on my journey as a BAME SLT working with adults.

There has been lots of discussion about increasing diversity in our profession recently, and rightly so. One of the conversations that sprang to my mind was the discussion I had a few times with a friend and colleague Sharon Adjei-Nicol. My dad is a migrant from Eastern Europe, and he had no idea what speech and language therapy was. Sharon had had similar conversations with her parents, and we often laughed about this. Yet this is not that funny, as this is one of the factors that has prevented the profession from developing and growing to meet the needs of our clients, many of whom come from BAME backgrounds themselves. Sharon has done some amazing work to increase awareness about the profession, by giving talks to BAME school pupils about our profession. She is great inspiration. So I asked her to share some of her experiences in this blog.

I will never forget the look on my parents’ faces when I informed them I intended to apply for courses in Speech and Language Therapy. It was a look of sheer and utter disbelief as if I had actually gone mad. “Never heard of it” said my dad, “is it an actual job?”. My mum sat there in silence a look of shame as if it to say “what are we going to tell people?”. As far as my African parents were concerned, only four professions exist in the world, these are (in order of preference) doctor, lawyer, pharmacist and accountant.

As the conversation about improving diversity in the SLT profession has increased after recent events, I am drawn back to that conversation. Often, we think one solution is to do more in-reach into schools to increase awareness about SLT. However, I think it is equally important to tap into parents and the older BAME community also, as it is often they that have significant influence over their children’s choices. Indeed, in many talks I have given to BAME school pupils about SLT, many have said their parents/family would not approve of such a career because it wouldn’t be respected in the community. Some of that stems from a lack of understanding or awareness of the role, but I also think it is about not seeing BAME people in the profession and not seeing it as something that we can do.

This was reflected in my own experience shadowing a SLT who over the course of the two days I observed her, did her best to put me off applying for the course. She kept emphasising how demanding the course was and at one point said “have you definitely explored pharmacy or nursing?” perhaps showing some unconscious bias as to where she saw I fit in. Unfortunately for my parents (and perhaps this SLT) I was even more sold on this career path after shadowing. I do wonder though how many other potential SLTs (perhaps not as stubborn and determined as I was) have been deterred by either their families or through conversations or experiences with SLTs already in the profession.

My parents did come round in the end and have been amazingly supportive of my career over the years. Just as I was about to embark on my studies at UCL in 2000, they gave me “the talk” one more time. Any BAME person will tell you there is a “talk” we receive at least once if not multiple times during our school and university years reminding us of the bias and racism we may face in the future. The talk always includes a line that goes something like this: “whatever you choose to do, you are going to have to work twice as hard to get half as far”.

When on qualifying in 2004 I decided I wanted to work in adult neuro, I was interviewed at least 15 times before getting a role. This is more than anyone else I have come across in all my years of working. For more than half of the jobs I did not receive any feedback (again not something my peers experienced). There was one role where my phone calls and emails for feedback went unanswered but a friend from the course who went for the same role did get a call back with comprehensive feedback. At least 7 or 8 times I was told I had just missed out, I was the 2^nd choice. Often the reason cited was vague, that the other person “just had that little bit more experience” (interesting given we were nearly always newly qualified therapists).

With the experience I now have I think the issue is that sub-consciously we have pre-set ideas of what an SLT looks like and we often hear the phrase that “people recruit in their own image”. I am not sure how many (if any) black SLTs were working in adult neuro/voice back in 2004. Indeed, although I met and worked with a few Asian SLTs it would be well over ten years before I would meet  another black SLT working with in similar areas to me. I do wonder whether my particular issues at the start of my career, were because of the lack of diversity in these particular areas of SLT. I am pleased to see the situation is changing somewhat. I supervise and mentor two black SLTs working with adults and am being introduced to more all the time on social media. However, there is still much more to do. Once I did finally get my foot in the door (ironically outside of London with an amazing team in Cheshire of all places) I was  fortunate in how things developed. Yes, there have been some unpleasant experiences along the way but I moved fairly quickly into Band 8 NHS roles, had the opportunity to complete a PhD, currently work in independent practice and will soon be starting a lecturing role in SLT.

Whether I have had to work twice as hard to get here as I was always told I would, I honestly don’t know and I guess it is not my place to say.

 

 

 

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 1^st 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 1^st 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 Groups, 5(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 aging, 14, 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.